12/31/08
Just finished my second acupuncture/reiki appointment and I feel way better than I have been. I actually did a little leg work out on my weight bench. Yeah! A small one, but it's a start. I've given my arm a little extra exercise too because it has not been getting enough and hence hasn't been getting much better. Owe, it actually hurts my shoulder to type. May have to keep this short. The acupuncture is supposed to help the nausea and my blood cells and my immune system. I came home and was able to eat w/o gagging, so something must be working. I've been having this weird thing happen where I get a craving for something, like grilled cheese, so I make it. I eat a bit of it, then get a bite in my mouth that I have to spit out, then I have to throw the rest of it away without looking at it. It's a lot like morning sickness, but without the sweet little baby at the end of it all. I guess I get my health and well being at the end of it all.
Ok, this is hurting too much. More later.
Wednesday, December 31, 2008
Tuesday, December 30, 2008
New Hair, New Day
12/30/08
In a few minutes I'll be going to have my hair done. I'm going to ask for a "pixie" cut and see how that goes. I'll get my wig cut to my style today too. I'm bringing along a bunch of hats just in case the wig sucks. I finally broke through my block last night and had a friend sit with my while I ordered some cute hats online. We talked through the hair thing, and it might be ok. Got a great reminder from F that it's just hair, it will grow back by summer time, and it could be an adventure.
Had my second chemo yesterday. Learned that I have to come in for the next 5 days and get the gut shot to grow white blood cells. It was going to be just one day, but because of the way the chemo was split this time, I have to do it this way instead. Not too thrilled at all at all at all. I'll have them give me two days worth there, then D will do the remaining 3 at home. I guess after getting 5 in a row, it won't be such a big deal to get one every 2 weeks after this.
Yesterday morning was so hard. I took the girls out to a store and got exhausted and cranky. Got home and we fought a little. I crawled into bed and couldn't stop crying. I had chemo at 1:30 and did not see how I was going to pull myself together enough to even get ready and go. J, my awesome babysitter got here early and took the girls to the park. They love him and were so excited to get to be with someone fun. I got a 30 minute nap and some meditation time and woke up feeling much better and more willing to face the day. My friend S came to get me and arrived with a HUGE bunch of cookies and chicken noodle soup and I was ALL better after that! It's amazing how a little kindness and companionship can turn my mood around. Off we went and we got there and there was a bit of a wait. All together it took 2 1/2 hours. I got all the pre-drugs again, the steroids and anti-nausea. The chemo was clear this time, which I prefer to the koolaid red color. I held it again and asked God to put in some healing, powerful energy. The needle didn't hurt quite as much this time, but it's still not fun, I felt better and better about being there as the time went on. It is such a warm, nurturing atmosphere and the nurses are great. Nurse Rugby played the singing bowl again and Nurse Texas was as kind as ever. They greet every patient with a hug and again when we leave. I saw Dr. T for a bit and he told me to exercise my arm more and referred me to PT. The swelling is normal he said.
This morning, waiting for my friend/wise woman to take me to the hair place, I feel oddly happy and peaceful. The weird body feeling I've been having- where I'm just not comfortable in my body, is not here today. YEAH YEAH!!!!!! I feel a tiny glimpse of normal! I listened to a great relaxation cd last night and had the image of a solid bridge being the chemo. The bridge was made up of 8 solid, thick boards. Each board is one round of chemo. On the other side is health and happiness. Well, I know on the other side is a month of rest, then 45 days of radiation. But, I'll make a new bridge with 45 bricks when the time comes. I'm going to ask Kaycee if she can draw this bridge and we can all color in a board after each round of chemo.
Ok, off to change my hair!
In a few minutes I'll be going to have my hair done. I'm going to ask for a "pixie" cut and see how that goes. I'll get my wig cut to my style today too. I'm bringing along a bunch of hats just in case the wig sucks. I finally broke through my block last night and had a friend sit with my while I ordered some cute hats online. We talked through the hair thing, and it might be ok. Got a great reminder from F that it's just hair, it will grow back by summer time, and it could be an adventure.
Had my second chemo yesterday. Learned that I have to come in for the next 5 days and get the gut shot to grow white blood cells. It was going to be just one day, but because of the way the chemo was split this time, I have to do it this way instead. Not too thrilled at all at all at all. I'll have them give me two days worth there, then D will do the remaining 3 at home. I guess after getting 5 in a row, it won't be such a big deal to get one every 2 weeks after this.
Yesterday morning was so hard. I took the girls out to a store and got exhausted and cranky. Got home and we fought a little. I crawled into bed and couldn't stop crying. I had chemo at 1:30 and did not see how I was going to pull myself together enough to even get ready and go. J, my awesome babysitter got here early and took the girls to the park. They love him and were so excited to get to be with someone fun. I got a 30 minute nap and some meditation time and woke up feeling much better and more willing to face the day. My friend S came to get me and arrived with a HUGE bunch of cookies and chicken noodle soup and I was ALL better after that! It's amazing how a little kindness and companionship can turn my mood around. Off we went and we got there and there was a bit of a wait. All together it took 2 1/2 hours. I got all the pre-drugs again, the steroids and anti-nausea. The chemo was clear this time, which I prefer to the koolaid red color. I held it again and asked God to put in some healing, powerful energy. The needle didn't hurt quite as much this time, but it's still not fun, I felt better and better about being there as the time went on. It is such a warm, nurturing atmosphere and the nurses are great. Nurse Rugby played the singing bowl again and Nurse Texas was as kind as ever. They greet every patient with a hug and again when we leave. I saw Dr. T for a bit and he told me to exercise my arm more and referred me to PT. The swelling is normal he said.
This morning, waiting for my friend/wise woman to take me to the hair place, I feel oddly happy and peaceful. The weird body feeling I've been having- where I'm just not comfortable in my body, is not here today. YEAH YEAH!!!!!! I feel a tiny glimpse of normal! I listened to a great relaxation cd last night and had the image of a solid bridge being the chemo. The bridge was made up of 8 solid, thick boards. Each board is one round of chemo. On the other side is health and happiness. Well, I know on the other side is a month of rest, then 45 days of radiation. But, I'll make a new bridge with 45 bricks when the time comes. I'm going to ask Kaycee if she can draw this bridge and we can all color in a board after each round of chemo.
Ok, off to change my hair!
Sunday, December 28, 2008
A Taste of Normal
Dec 28, 2008
I got to go on a date last night with F to the hot tubs in town and it was exquisite. As soon as I sunk into the water, my arm felt great- weightless and almost pain free. Ahhhh, it was nice. It was the first time I've submerged in water since before this last surgery. As I type this, I've got a bath filling up for myself. I think warm water is going to be key in healing my arm. It was nice, too, to be on a date and to feel almost like my old self.
I realized today that I've got some energy, but just not enough to do what I used to do. I was talking to my friend D about how I'm kind of bored. I realized that much of my time was filled with house work and going places with the girls. I can't really do much house work, so I have all this time on my hands. I need some new hobbies I think. I used to do some quiet things when I stayed home with Karina when she was a baby- I quilted and did scrap booking. Maybe I could start that again. Mostly I'm missing soccer and skiing. I'd be skiing right now if things were different.
We went to a Duck basketball game and that felt good and normal. More chemo tomorrow. Blah. I'm not getting my head shaved- just cut really short for now. It's all I can do.
I got to go on a date last night with F to the hot tubs in town and it was exquisite. As soon as I sunk into the water, my arm felt great- weightless and almost pain free. Ahhhh, it was nice. It was the first time I've submerged in water since before this last surgery. As I type this, I've got a bath filling up for myself. I think warm water is going to be key in healing my arm. It was nice, too, to be on a date and to feel almost like my old self.
I realized today that I've got some energy, but just not enough to do what I used to do. I was talking to my friend D about how I'm kind of bored. I realized that much of my time was filled with house work and going places with the girls. I can't really do much house work, so I have all this time on my hands. I need some new hobbies I think. I used to do some quiet things when I stayed home with Karina when she was a baby- I quilted and did scrap booking. Maybe I could start that again. Mostly I'm missing soccer and skiing. I'd be skiing right now if things were different.
We went to a Duck basketball game and that felt good and normal. More chemo tomorrow. Blah. I'm not getting my head shaved- just cut really short for now. It's all I can do.
Saturday, December 27, 2008
The Blah's
Not sure what the date is- a few days after Christmas. I've been so tired- taking 2 naps a day when I can. My brother left, and my mom is still here, so most days I've been able to get plenty of rest. I don't think its the chemo that's making me tired, I think its the anti-nausea pills. The ones that say they cause dizziness and sleepiness and be careful when driving and that I'm supposed to take for 2-4 days afterwards. The good news is that my appetite is ok. Not great. I feel hungry, but don't eat too much. Probably from inactivity though. My main gripe is my arm. I am THRILLED that the drain came out- the dr. took it out right before chemo. But, it is swollen and sore and very hard to type. It gets better and worse throughout the day. Today is the first day I haven't taken anti-nausea all day, so I'm not so drugged up feeling. But, this will be short as my arm is feeling numb. I have to go back in on Monday for more chemo. Last week, only one of my two drugs were available. The other one was snowed in at the Portland airport. So, part two on Monday. Ick.
The day of the chemo wasn't terrible. I started the day getting acupuncture and reiki. Then got to Dr. T's office and it was very pretty and festive. I spent some time in the mediation room first. Nurse Rugby played the crystal bowl right as the chemo was beginning. Nurse Texas ( a very nice, nurturing woman with a Texas accent) encouraged me to hold the bag of chemo and put good energy into it. It looked like red Koolaide. At first all I could do was poke it. Then, I did hold it and put some good, healing thoughts into it. I have read that people who believe that their treatment is a good thing and that it will work do better. I cried when the needle first went in- it hurt and I'm so super sensitive to needles now. I think I yelled a bit too. But, I didn't cuss! Well, I did cuss when Dr. T cut the stitches and took out the tube, but we were in his office so none of the other patients heard.
After the chemo, I was so tired. Again, I don't really think it was because of the drug. I think it was all the anticipatory stress and lack of sleep going into it. Christmas was ok. Lot's of napping and taking it easy, but very festive and fun.
More later when I can type better.
The day of the chemo wasn't terrible. I started the day getting acupuncture and reiki. Then got to Dr. T's office and it was very pretty and festive. I spent some time in the mediation room first. Nurse Rugby played the crystal bowl right as the chemo was beginning. Nurse Texas ( a very nice, nurturing woman with a Texas accent) encouraged me to hold the bag of chemo and put good energy into it. It looked like red Koolaide. At first all I could do was poke it. Then, I did hold it and put some good, healing thoughts into it. I have read that people who believe that their treatment is a good thing and that it will work do better. I cried when the needle first went in- it hurt and I'm so super sensitive to needles now. I think I yelled a bit too. But, I didn't cuss! Well, I did cuss when Dr. T cut the stitches and took out the tube, but we were in his office so none of the other patients heard.
After the chemo, I was so tired. Again, I don't really think it was because of the drug. I think it was all the anticipatory stress and lack of sleep going into it. Christmas was ok. Lot's of napping and taking it easy, but very festive and fun.
More later when I can type better.
Wednesday, December 24, 2008
First Chemo- Not So Bad!!
12/24/08
Just got back from my first chemo day. The anticipation was horrible. The actual event was non-eventful- Thank You God!!!!!! More details later. Thank you so so so much to my friend K who drove me and who stayed to be with me through the first few hours and held my hand during the hard parts. Thank you so so so much to my friend D who stayed with me for the second half and made sure I was ok and brought me a nice bamboo blanket. Thank you so so so much to my boyfriend F who brought me food and made me laugh and reminded me that I'm normal.
Here's my message from the universe today. I thought it was great!
If it's not yet obvious to you, the real reason for this season is you, Krista. A more perfect child of the Universe has never lived. Until now, only a celebration cloaked in myth and mystery could hint at your sublime heritage and divine destiny. You are life's prayer of becoming and its answer. The first light at the dawn of eternity, drawn from the ether, so that the Universe might know its depths, discover its heights, and frolic in endless seas of blessed emotion.
A pioneer into illusion, an adventurer into the unknown, and a lifter of veils. Courageous, heroic and exalted by billions in the unseen.
To give beyond reason. To care beyond hope. To love without limit. To reach, stretch, and dream, in spite of your fears. These are the hallmarks of divinity - traits of the immortal - your badges of honor. Wear them with a pride as great as the unspeakable pride we feel for you.
Your light has illuminated darkened paths, your gaze has lifted broken spirits, and already your life has changed the destiny of all who will ever follow.
This is the time of year we celebrate Krista Shultz.
Bowing before Greatness,
The Universe
Just got back from my first chemo day. The anticipation was horrible. The actual event was non-eventful- Thank You God!!!!!! More details later. Thank you so so so much to my friend K who drove me and who stayed to be with me through the first few hours and held my hand during the hard parts. Thank you so so so much to my friend D who stayed with me for the second half and made sure I was ok and brought me a nice bamboo blanket. Thank you so so so much to my boyfriend F who brought me food and made me laugh and reminded me that I'm normal.
Here's my message from the universe today. I thought it was great!
If it's not yet obvious to you, the real reason for this season is you, Krista. A more perfect child of the Universe has never lived. Until now, only a celebration cloaked in myth and mystery could hint at your sublime heritage and divine destiny. You are life's prayer of becoming and its answer. The first light at the dawn of eternity, drawn from the ether, so that the Universe might know its depths, discover its heights, and frolic in endless seas of blessed emotion.
A pioneer into illusion, an adventurer into the unknown, and a lifter of veils. Courageous, heroic and exalted by billions in the unseen.
To give beyond reason. To care beyond hope. To love without limit. To reach, stretch, and dream, in spite of your fears. These are the hallmarks of divinity - traits of the immortal - your badges of honor. Wear them with a pride as great as the unspeakable pride we feel for you.
Your light has illuminated darkened paths, your gaze has lifted broken spirits, and already your life has changed the destiny of all who will ever follow.
This is the time of year we celebrate Krista Shultz.
Bowing before Greatness,
The Universe
Tuesday, December 23, 2008
Last Day
12/23/08
Today is my last chemo free day. I woke up too early and can't get back to sleep. I first got a call yesterday from the dr.'s office asking me if I realized that I was going in for my first chemo appointment on Christmas Eve. Well DUH!!! Of course I realized that. I've been stressing about that for quite some time. I was told that it might be better for me to wait till next Monday because if I have any complications, there won't be anyone in the office for the next 4 days. Oh great, I thought. I had actually come to a point of acceptance about my start date. My family is in town to watch the kids, and the girls will be distracted by Christmas. If I wait till Monday, my family will be gone and the kids are still out of school and I'd have to find someone to watch them. Besides, what about all that stuff Dr. T said about how I needed to start as soon as possible? I told them I wanted to stick to my original start date. A little bit later, another call from the rugby nurse asking if I realized that I was starting chemo on Christmas Eve. AARRRGGGHHHH! Of course I realize it! He asked if I wanted to come in a little bit earlier so I could be done earlier. So, now I'm having my acupuncture appointment at 8:30, then heading straight over to the chemo place afterwards. I had myself reassured that maybe it wouldn't be so bad and maybe I'd be one of the ones who sailed right through with little side effects. But, the dr.'s office reminded me about how I needed to be SURE to have all of my anti-nausea medicine on hand and to be SURE to take it properly so I don't get sick. I have been a little sick this past week with a cold, and I'm very scared about being sick during this. I just can't interact well and take good care of the girls when I'm sick. I'm nervous about having them out of school and home with me all next week, with my family gone. I know I've got people to call for help, but it gets hard to keep asking. And besides, what I really want is for me to get to spend this time off with them. I get to missing them and I get to missing our fun times together when I'm in bed and they're gone.
My drain is still in. Still draining too much to get taken out. I called the office yesterday to INSIST that they take it out. They said no. I had D come last night to unclog it. It was so clogged up that it began leaking out of the incision. She worked on it for a LONG time and while I'm grateful, it totally SUCKED. We took a cookies and milk break in between and that was nice. Karina made a bunch of great Christmas cookies and I'm not holding back at all on the sweets, so I ate a bunch and thoroughly enjoyed them. I thought about starting to exercise a little bit and I got around to clearing all the junk off of my weight bench, but ran out of energy before I could actually put weights on and get started. I had the thought that once chemo starts and once the drain is taken out, I might actually begin to feel better than I have been feeling. This drain is a real drag and it's slowing down and making me cautious of my body. That and my arm isn't all better yet. I've been going to extra Alanon meetings, and everyone hugs afterwards, and I've been trying to protect that side, but people are enthusiastic this time of year so I've gotten some painful hugs. But I'm grateful.
I got too go to a few Christmas parties recently and it was so fun to feel normal for a bit and to just relax and enjoy myself. I did not get to go on my overnight trip away, but F and I got to spend some time together and again, it is so nice to have little bits of time where I feel like myself again. It's nice to remember that I'm not Cancer Lady. I'm actually Krista, who happens to have cancer right now, but won't have it forever. It's just here for a little inconvenient visit and will be gone way after it's overstayed its welcome.
I've been listening to some talks on CD from some people- not sure what to call them- spiritual leaders maybe? All stuff to do with putting my intention out to the universe and getting back what I'm focusing on. So again, I've been trying to focus on health and wellness. The speaker I heard yesterday talked about how going through hard times is like getting into a boat and going down stream. The stream is going to carry me along no matter what. I get to decide whether I want to point my boat upstream and paddle like crazy, but get pulled down stream anyway. Or, I could decide to point my boat downstream an have an easy time of it. The pain is in the struggle, not the destination. I've been trying to hold the image in my mind of the chemo flowing into my veins like a stream, and I can float along in my kayak and go with it and accept it and be grateful for it. My body is going to be a war zone with a strong weapon firing away at any rogue cancer cells. But, there is great beauty even in war zones. I remember being on middle of the night guard duty the night the U.S. first bombed Baghdad in the Gulf War. I didn't know what was happening, but I could see constant flashes of light on the horizon, and I could hear the distant booming. I thought it was a lightning and thunder storm for awhile, then found out what it was. I was horrified deep in my soul with each flash of light. I remember feeling so sick about what was happening. I looked straight up into the sky to ask God what the heck he was doing, and I remember the night sky was so beautiful. It was perfectly clear and full of stars. Right above the horizon where the bombing was happening, the big dipper was sitting magnificently huge and bright. I had never seen it like that before. I had this sense of peace settle over me and I got the feeling that even though big, crappy things were happening at the moment that didn't make any sense, God was in charge and was watching over the world. That's my thought for myself right now- God is in charge and is smart and knows what the big picture is. I view cancer as a big crappy thing, but I don't want to miss the big dipper gift on the other side.
Today is my last chemo free day. I woke up too early and can't get back to sleep. I first got a call yesterday from the dr.'s office asking me if I realized that I was going in for my first chemo appointment on Christmas Eve. Well DUH!!! Of course I realized that. I've been stressing about that for quite some time. I was told that it might be better for me to wait till next Monday because if I have any complications, there won't be anyone in the office for the next 4 days. Oh great, I thought. I had actually come to a point of acceptance about my start date. My family is in town to watch the kids, and the girls will be distracted by Christmas. If I wait till Monday, my family will be gone and the kids are still out of school and I'd have to find someone to watch them. Besides, what about all that stuff Dr. T said about how I needed to start as soon as possible? I told them I wanted to stick to my original start date. A little bit later, another call from the rugby nurse asking if I realized that I was starting chemo on Christmas Eve. AARRRGGGHHHH! Of course I realize it! He asked if I wanted to come in a little bit earlier so I could be done earlier. So, now I'm having my acupuncture appointment at 8:30, then heading straight over to the chemo place afterwards. I had myself reassured that maybe it wouldn't be so bad and maybe I'd be one of the ones who sailed right through with little side effects. But, the dr.'s office reminded me about how I needed to be SURE to have all of my anti-nausea medicine on hand and to be SURE to take it properly so I don't get sick. I have been a little sick this past week with a cold, and I'm very scared about being sick during this. I just can't interact well and take good care of the girls when I'm sick. I'm nervous about having them out of school and home with me all next week, with my family gone. I know I've got people to call for help, but it gets hard to keep asking. And besides, what I really want is for me to get to spend this time off with them. I get to missing them and I get to missing our fun times together when I'm in bed and they're gone.
My drain is still in. Still draining too much to get taken out. I called the office yesterday to INSIST that they take it out. They said no. I had D come last night to unclog it. It was so clogged up that it began leaking out of the incision. She worked on it for a LONG time and while I'm grateful, it totally SUCKED. We took a cookies and milk break in between and that was nice. Karina made a bunch of great Christmas cookies and I'm not holding back at all on the sweets, so I ate a bunch and thoroughly enjoyed them. I thought about starting to exercise a little bit and I got around to clearing all the junk off of my weight bench, but ran out of energy before I could actually put weights on and get started. I had the thought that once chemo starts and once the drain is taken out, I might actually begin to feel better than I have been feeling. This drain is a real drag and it's slowing down and making me cautious of my body. That and my arm isn't all better yet. I've been going to extra Alanon meetings, and everyone hugs afterwards, and I've been trying to protect that side, but people are enthusiastic this time of year so I've gotten some painful hugs. But I'm grateful.
I got too go to a few Christmas parties recently and it was so fun to feel normal for a bit and to just relax and enjoy myself. I did not get to go on my overnight trip away, but F and I got to spend some time together and again, it is so nice to have little bits of time where I feel like myself again. It's nice to remember that I'm not Cancer Lady. I'm actually Krista, who happens to have cancer right now, but won't have it forever. It's just here for a little inconvenient visit and will be gone way after it's overstayed its welcome.
I've been listening to some talks on CD from some people- not sure what to call them- spiritual leaders maybe? All stuff to do with putting my intention out to the universe and getting back what I'm focusing on. So again, I've been trying to focus on health and wellness. The speaker I heard yesterday talked about how going through hard times is like getting into a boat and going down stream. The stream is going to carry me along no matter what. I get to decide whether I want to point my boat upstream and paddle like crazy, but get pulled down stream anyway. Or, I could decide to point my boat downstream an have an easy time of it. The pain is in the struggle, not the destination. I've been trying to hold the image in my mind of the chemo flowing into my veins like a stream, and I can float along in my kayak and go with it and accept it and be grateful for it. My body is going to be a war zone with a strong weapon firing away at any rogue cancer cells. But, there is great beauty even in war zones. I remember being on middle of the night guard duty the night the U.S. first bombed Baghdad in the Gulf War. I didn't know what was happening, but I could see constant flashes of light on the horizon, and I could hear the distant booming. I thought it was a lightning and thunder storm for awhile, then found out what it was. I was horrified deep in my soul with each flash of light. I remember feeling so sick about what was happening. I looked straight up into the sky to ask God what the heck he was doing, and I remember the night sky was so beautiful. It was perfectly clear and full of stars. Right above the horizon where the bombing was happening, the big dipper was sitting magnificently huge and bright. I had never seen it like that before. I had this sense of peace settle over me and I got the feeling that even though big, crappy things were happening at the moment that didn't make any sense, God was in charge and was watching over the world. That's my thought for myself right now- God is in charge and is smart and knows what the big picture is. I view cancer as a big crappy thing, but I don't want to miss the big dipper gift on the other side.
Friday, December 19, 2008
Chemo for Christmas
12/19/08
Ok, it's official. I really am getting chemo for Christmas. My first treatment is at 10:45 Dec 24. They are sending me home with the $10,000.00 shot to give to myself on Christmas day. Well, I told them NO WAY could I give it to myself, so D (my friend the nurse) agreed to come over and give it to me. I could have delayed it to the next week, but not after the talk Dr. T gave me last time. I'm glad I've got family here to orchestrate Christmas, and maybe it will be nice to have the girls distracted by presents so I can rest if I need to. Of course I haven't actually gotten them any presents yet. Between the snow, the appointments, and the fatigue, I haven't gotten into the Christmas shopping spirit yet. I do believe that every Christmas after this one will be so good for me and I believe that I will always be grateful in the future that I'm not getting chemo for Christmas.
I was in Dr. T's office for 2 1/2 hours today getting more chemo information. I am astounded at the amount of drugs that are going to be pumped into my body. Two chemo drugs, plus a whole bunch more to prevent allergic reactions and nausea. I will get a whole bunch of drugs to take home with me too to take before and after for a variety of reasons. The good thing about all these drugs is that they are designed to ease the effects of chemo on me. Mrs. T. told me today that I should NOT be puking at all from the chemo. If I do start puking, I first take one drug, then if that doesn't work, I go on to another one (the second one is something like $75.00 a pill), then go on to a third one if needed from there. I got my schedule of when I'll be going in. Every other Wednesday for chemo, the next day for the miracle shot, and a few other times throughout the weeks for various other reasons. I also got the talk from the business office about my cost per month for the treatment- $370.00- enough for a nice car payment. Luckily I will just pay this amount up to my insurance's cap, which I will hit within the first three months. I got a bill today from the doctor's office for the last surgery. I am amazed at the cost of medical care. I spent so long in the military system, where I never received a bill for anything. I really had no concept of how expensive medical care is. I found it interesting that each procedure was broken down- $3,000 for the port-a-cath, $900 for the lumpectomy, part II, $1700 for the removal of the lymph nodes, and on and on. Weird, weird, weird.
After the appointment, I had an awesome lunch at Laughing Planet with my mom and brother. Then went to a wig shop nearby. I was in a much better mood today. I didn't find anything I liked. They were all so poofy and wig-like. We went across the street to Sweet Life afterwards and I got my cake and tea- delicious and I savored every bite! I went to one more wig shop and sort of liked a real hair one, but it was the wrong color and the wrong style. Finally, I decided to go back to the original shop that I had had such a bad experience in a few days ago. This time the owner was there and she was very kind and helpful. She found a wig for me that she said would be perfect once she ordered it in my color and cut it into my style. I can't quite picture it, but I trust her (no other choice- no more wig shops in town to try). I'm waiting till after Christmas, next week, to have my head shaved and do the wig thing. One trauma at a time.
I also set up an appointment with an acupuncturist for right before the chemo. Mrs. T highly recommends acupuncture before each treatment to help with my immune system and my appetite. I'm willing to do anything I can to hopefully feel ok during the next 4 months. I've got it all marked out on my calendar, and as long as I don't have to delay any treatments, I should have my hair just starting to grow in by my 40th birthday in June. Hair for my birthday- yeah!
Trouble sleeping tonight. So much weighing so heavily on my mind. I've got to find a way back to my positive, upbeat place where I believe the universe will give me whatever I can imagine. Maybe tomorrow. No appointments tomorrow, hopefully just Christmas shopping and fun!
Ok, it's official. I really am getting chemo for Christmas. My first treatment is at 10:45 Dec 24. They are sending me home with the $10,000.00 shot to give to myself on Christmas day. Well, I told them NO WAY could I give it to myself, so D (my friend the nurse) agreed to come over and give it to me. I could have delayed it to the next week, but not after the talk Dr. T gave me last time. I'm glad I've got family here to orchestrate Christmas, and maybe it will be nice to have the girls distracted by presents so I can rest if I need to. Of course I haven't actually gotten them any presents yet. Between the snow, the appointments, and the fatigue, I haven't gotten into the Christmas shopping spirit yet. I do believe that every Christmas after this one will be so good for me and I believe that I will always be grateful in the future that I'm not getting chemo for Christmas.
I was in Dr. T's office for 2 1/2 hours today getting more chemo information. I am astounded at the amount of drugs that are going to be pumped into my body. Two chemo drugs, plus a whole bunch more to prevent allergic reactions and nausea. I will get a whole bunch of drugs to take home with me too to take before and after for a variety of reasons. The good thing about all these drugs is that they are designed to ease the effects of chemo on me. Mrs. T. told me today that I should NOT be puking at all from the chemo. If I do start puking, I first take one drug, then if that doesn't work, I go on to another one (the second one is something like $75.00 a pill), then go on to a third one if needed from there. I got my schedule of when I'll be going in. Every other Wednesday for chemo, the next day for the miracle shot, and a few other times throughout the weeks for various other reasons. I also got the talk from the business office about my cost per month for the treatment- $370.00- enough for a nice car payment. Luckily I will just pay this amount up to my insurance's cap, which I will hit within the first three months. I got a bill today from the doctor's office for the last surgery. I am amazed at the cost of medical care. I spent so long in the military system, where I never received a bill for anything. I really had no concept of how expensive medical care is. I found it interesting that each procedure was broken down- $3,000 for the port-a-cath, $900 for the lumpectomy, part II, $1700 for the removal of the lymph nodes, and on and on. Weird, weird, weird.
After the appointment, I had an awesome lunch at Laughing Planet with my mom and brother. Then went to a wig shop nearby. I was in a much better mood today. I didn't find anything I liked. They were all so poofy and wig-like. We went across the street to Sweet Life afterwards and I got my cake and tea- delicious and I savored every bite! I went to one more wig shop and sort of liked a real hair one, but it was the wrong color and the wrong style. Finally, I decided to go back to the original shop that I had had such a bad experience in a few days ago. This time the owner was there and she was very kind and helpful. She found a wig for me that she said would be perfect once she ordered it in my color and cut it into my style. I can't quite picture it, but I trust her (no other choice- no more wig shops in town to try). I'm waiting till after Christmas, next week, to have my head shaved and do the wig thing. One trauma at a time.
I also set up an appointment with an acupuncturist for right before the chemo. Mrs. T highly recommends acupuncture before each treatment to help with my immune system and my appetite. I'm willing to do anything I can to hopefully feel ok during the next 4 months. I've got it all marked out on my calendar, and as long as I don't have to delay any treatments, I should have my hair just starting to grow in by my 40th birthday in June. Hair for my birthday- yeah!
Trouble sleeping tonight. So much weighing so heavily on my mind. I've got to find a way back to my positive, upbeat place where I believe the universe will give me whatever I can imagine. Maybe tomorrow. No appointments tomorrow, hopefully just Christmas shopping and fun!
Wednesday, December 17, 2008
My Heart
12/17/08
I saw my heart today, on an ultra sound machine. It was as miraculous as seeing Karina on an ultra sound when I was pregnant (I didn't have one with Kaycee). I could see it beating, and I could see the different chambers. I don't really know what I was looking at, but it looked pretty strong and healthy to me. The heart is a miracle. It is so amazing the way the human body works. The tech doing the exam commented to me that the human body can take quite a beating, such as with chemotherapy, and bounce back surprisingly well. I was a bit freaked when he showed me a piece of the port-a-cath dangling down into one of my heart chambers. I couldn't quite read from him whether or not this is normal. I'll have to ask Dr. T. The thought of the chemo being dumped right into my heart is awful. But, I like the thought of my body taking a beating, and then bouncing back.
I put in a full day today- a few hours of work, then lots of driving through the snow to my different appointments. I was so tired by the end of the day. I'm wondering- will chemo fatigue be like the fatigue I've had for the past four years from working full time and being a single parent? Or will I have that same fatigue, plus a whole other layer? My last appointment was an ultra sound of my ovaries. That one was not so miraculous like the heart one. I won't go into details here, but I will say it was horribly uncomfortable and a crappy way to spend an afternoon. It was, I believe, my EIGHTH visit to Oregon Imaging. I just repeated over and over again these two phrases: "God grant me the serenity to accept the things I cannot change" and "I'm grateful for this technology", during the exam. I got through it and I even had 20 minutes to myself today to do a little Christmas shopping! I got a few presents and I got myself some hats made from Alpaca fur. I tried one on and tucked all my hair up in it just to see what it'd be like. I looked at all the people around me today and realized that MANY people are wearing hats right now. So, for the next few months anyway, wearing a hat will be no big deal. And, no one gave me a second look with my hair tucked up. This might possibly not be as bad as I've been imagining it. The only thing was that once I got inside, I wanted to take the hat off- it got itchy and hot.
My brother arrived today for a visit and it was SO nice to come home, completely exhausted, and be able to eat dinner and go lay down for a nap. He cleaned the kitchen and spent time with the girls and I was able to relax and rest without guilt. My mom comes tomorrow and it will be so nice to have extra help with the girls and with the day to day stuff of life.
Tomorrow is my appointment with the nurses to get more chemo info. I'm feeling so good and upbeat today. I knew yesterday's feelings would pass. I should tell myself that tomorrow might be hard again, but it will pass. I should plan a trip to Sweet Life afterwards to cheer myself up with a HUGE piece of decadent, gooey, chocolate cake!
I saw my heart today, on an ultra sound machine. It was as miraculous as seeing Karina on an ultra sound when I was pregnant (I didn't have one with Kaycee). I could see it beating, and I could see the different chambers. I don't really know what I was looking at, but it looked pretty strong and healthy to me. The heart is a miracle. It is so amazing the way the human body works. The tech doing the exam commented to me that the human body can take quite a beating, such as with chemotherapy, and bounce back surprisingly well. I was a bit freaked when he showed me a piece of the port-a-cath dangling down into one of my heart chambers. I couldn't quite read from him whether or not this is normal. I'll have to ask Dr. T. The thought of the chemo being dumped right into my heart is awful. But, I like the thought of my body taking a beating, and then bouncing back.
I put in a full day today- a few hours of work, then lots of driving through the snow to my different appointments. I was so tired by the end of the day. I'm wondering- will chemo fatigue be like the fatigue I've had for the past four years from working full time and being a single parent? Or will I have that same fatigue, plus a whole other layer? My last appointment was an ultra sound of my ovaries. That one was not so miraculous like the heart one. I won't go into details here, but I will say it was horribly uncomfortable and a crappy way to spend an afternoon. It was, I believe, my EIGHTH visit to Oregon Imaging. I just repeated over and over again these two phrases: "God grant me the serenity to accept the things I cannot change" and "I'm grateful for this technology", during the exam. I got through it and I even had 20 minutes to myself today to do a little Christmas shopping! I got a few presents and I got myself some hats made from Alpaca fur. I tried one on and tucked all my hair up in it just to see what it'd be like. I looked at all the people around me today and realized that MANY people are wearing hats right now. So, for the next few months anyway, wearing a hat will be no big deal. And, no one gave me a second look with my hair tucked up. This might possibly not be as bad as I've been imagining it. The only thing was that once I got inside, I wanted to take the hat off- it got itchy and hot.
My brother arrived today for a visit and it was SO nice to come home, completely exhausted, and be able to eat dinner and go lay down for a nap. He cleaned the kitchen and spent time with the girls and I was able to relax and rest without guilt. My mom comes tomorrow and it will be so nice to have extra help with the girls and with the day to day stuff of life.
Tomorrow is my appointment with the nurses to get more chemo info. I'm feeling so good and upbeat today. I knew yesterday's feelings would pass. I should tell myself that tomorrow might be hard again, but it will pass. I should plan a trip to Sweet Life afterwards to cheer myself up with a HUGE piece of decadent, gooey, chocolate cake!
Tuesday, December 16, 2008
The Talk
12/16/08
I got "the talk" today from Dr. T. about chemotherapy. It wasn't fun AT ALL and I'm in a pretty pissed off, weepy, tired kind of a mood. I think I might have a cold too. I also attempted to go wig shopping today, but it turned out bad. Or maybe good, depending on what spin I put on it.
Here's the chemo plan: Beginning soon (still don't know exactly when, but probably Monday), I'll begin. I will get 2 types of drugs for 4 cycles, 2 weeks apart. Then, I'll switch and get one type of drug for 4 cycles, 2 weeks apart. This way of doing it is called "dose dense". There is a reason why I'm having it done this way, but I don't remember, or maybe I didn't really understand when it was explained to me. After each chemo, I'll go in the next day and get a shot of something to boost my white blood count. (Time out here for a little disclaimer. I am sure that I don't fully understand all the medical stuff that is explained to me, so when I explain it here, it is just as I understood it, and may have lots of inaccuracies). A friend went through this a few years ago and called this her "$6,000.00 shot because that's what it costs. I asked Dr. T if this was the same shot, and he said yes, but now its the $10,000.00 shot. Inflation I guess. I also have a bunch of drugs to take just before and just after chemo. I'm thinking they are to help with the side effects. The hard part about today was that Dr. T had to explain all of the possible side effects. And with each side effect, he told me about a drug to counteract those side effects, but then each of those drugs had their own list of side effects, and on and on for almost an hour. I just can't believe how I've lived my life mostly drug free and really prided myself on keeping my body clean and healthy. And now its going to be dumped full of drugs. He described chemo as being like round up- great at killing weeds, but also does horrible damage to the surrounding lawn. Just for today I'm feeling pretty rotten about all of this. I know I need to shift my thinking and put a positive spin on all this, but for today I'm giving myself permission to feel rotten. After his big chem talk, I asked him what would happen if I didn't do it. He said that my recurrence rate is 45% and that if I don't have chemo and it comes back, I'll die. Just like that, he said I'd die. Then it hit me. I have CANCER. People die from cancer. I think he was trying to make the point that as much as chemo sucks, it sucks a lot less than dying. Death is the BIG HUSH HUSH that no one (myself included) wants to talk about or think about or bring up with me. I've pushed that thought so far away that I didn't think about it until today. Ok, this is pretty serious I'm thinking. I guess I'll have the chemo and be damn grateful for it.
F was with me for this whole talk and I was so grateful to not be alone. We enjoyed some humor after we left, then I got back home. I was alone for a bit with the girls on play dates. I got a message from the doctor's office about my next 3 appointments. Two tomorrow. One to check my heart to see if its strong enough to tolerate the chemo that has the side effect of weakening the heart. The other one to check the cyst on my ovary. Just for morbid fun I looked up survival rates for ovarian cancer. Pretty dismal. No one but me seems concerned about this cyst, so I'm taking that as a good sign. Day after tomorrow I have another appointment with the nurses where I get my intro to chemo class. I'm supposed to get a bunch of stuff to read about each of the drugs, the side effects, and what to do for each one. I'm supposed to read all this before starting chemo. I've kind of decided that I need to not delve too deeply into the bad stuff about these drugs- I've got to take them anyway, so maybe I need to remain a little bit ignorant in order to preserve my sanity. And I should try to remember that many, many people won't experience the negative parts of the drugs. I could be one of those people.
My wig experience sucked, The lady who I made the appointment with was out, and the hair person thought I was there for a hair cut and she was running late and Kaycee was home with a friend and the roads sucked and I wasn't going to get out of their before dark and as I walked into the wig room, the lady commented that she didn't know anything about wigs and the first wig I saw was one of those grey ones again. Thank GOD I was with my sponsor. We left and had a hot drink and talked. I made a new plan for how I'm going to have my head shaved and I'll try again another day for the wig. I think today I needed to just relax and talk a little bit. I'm going to end this now before it gets any more negative. Just a day for me to do some more grieving and crying. It will pass.
I got "the talk" today from Dr. T. about chemotherapy. It wasn't fun AT ALL and I'm in a pretty pissed off, weepy, tired kind of a mood. I think I might have a cold too. I also attempted to go wig shopping today, but it turned out bad. Or maybe good, depending on what spin I put on it.
Here's the chemo plan: Beginning soon (still don't know exactly when, but probably Monday), I'll begin. I will get 2 types of drugs for 4 cycles, 2 weeks apart. Then, I'll switch and get one type of drug for 4 cycles, 2 weeks apart. This way of doing it is called "dose dense". There is a reason why I'm having it done this way, but I don't remember, or maybe I didn't really understand when it was explained to me. After each chemo, I'll go in the next day and get a shot of something to boost my white blood count. (Time out here for a little disclaimer. I am sure that I don't fully understand all the medical stuff that is explained to me, so when I explain it here, it is just as I understood it, and may have lots of inaccuracies). A friend went through this a few years ago and called this her "$6,000.00 shot because that's what it costs. I asked Dr. T if this was the same shot, and he said yes, but now its the $10,000.00 shot. Inflation I guess. I also have a bunch of drugs to take just before and just after chemo. I'm thinking they are to help with the side effects. The hard part about today was that Dr. T had to explain all of the possible side effects. And with each side effect, he told me about a drug to counteract those side effects, but then each of those drugs had their own list of side effects, and on and on for almost an hour. I just can't believe how I've lived my life mostly drug free and really prided myself on keeping my body clean and healthy. And now its going to be dumped full of drugs. He described chemo as being like round up- great at killing weeds, but also does horrible damage to the surrounding lawn. Just for today I'm feeling pretty rotten about all of this. I know I need to shift my thinking and put a positive spin on all this, but for today I'm giving myself permission to feel rotten. After his big chem talk, I asked him what would happen if I didn't do it. He said that my recurrence rate is 45% and that if I don't have chemo and it comes back, I'll die. Just like that, he said I'd die. Then it hit me. I have CANCER. People die from cancer. I think he was trying to make the point that as much as chemo sucks, it sucks a lot less than dying. Death is the BIG HUSH HUSH that no one (myself included) wants to talk about or think about or bring up with me. I've pushed that thought so far away that I didn't think about it until today. Ok, this is pretty serious I'm thinking. I guess I'll have the chemo and be damn grateful for it.
F was with me for this whole talk and I was so grateful to not be alone. We enjoyed some humor after we left, then I got back home. I was alone for a bit with the girls on play dates. I got a message from the doctor's office about my next 3 appointments. Two tomorrow. One to check my heart to see if its strong enough to tolerate the chemo that has the side effect of weakening the heart. The other one to check the cyst on my ovary. Just for morbid fun I looked up survival rates for ovarian cancer. Pretty dismal. No one but me seems concerned about this cyst, so I'm taking that as a good sign. Day after tomorrow I have another appointment with the nurses where I get my intro to chemo class. I'm supposed to get a bunch of stuff to read about each of the drugs, the side effects, and what to do for each one. I'm supposed to read all this before starting chemo. I've kind of decided that I need to not delve too deeply into the bad stuff about these drugs- I've got to take them anyway, so maybe I need to remain a little bit ignorant in order to preserve my sanity. And I should try to remember that many, many people won't experience the negative parts of the drugs. I could be one of those people.
My wig experience sucked, The lady who I made the appointment with was out, and the hair person thought I was there for a hair cut and she was running late and Kaycee was home with a friend and the roads sucked and I wasn't going to get out of their before dark and as I walked into the wig room, the lady commented that she didn't know anything about wigs and the first wig I saw was one of those grey ones again. Thank GOD I was with my sponsor. We left and had a hot drink and talked. I made a new plan for how I'm going to have my head shaved and I'll try again another day for the wig. I think today I needed to just relax and talk a little bit. I'm going to end this now before it gets any more negative. Just a day for me to do some more grieving and crying. It will pass.
Monday, December 15, 2008
Snow Delay
12/15/08
It snowed and snowed today, beginning at about 1:00 in the morning, when I was tossing and turning, unable to sleep. Lot's of soreness, swelling, and discomfort in the area around the drain last night. I can't sleep on my side and last night it was hard to sleep on my back. Finally gave up and watched a chick flick until about 2:00, then went to sleep. I realized that there would be no school, so I didn't set the alarm. Woke up to screaming, crazy kids and they went out to play while I went back to sleep. They were cold and tired by about 9:00, so I finally had to get up. Walked out of my calm, peaceful bedroom into a house full of wet shoes, boots, socks, pants, shirts, gloves, scarves, jackets, etc, strewn throughout the living room and dining room. The kitchen was full of pots of snow and half a bottle of pricey, real maple syrup had been dumped into the pots. They were making candy. Kaycee was cold and upset that the snow was too dry to make a decent snow man and both girls were really, really wanting me to get dressed and come out to play with them. Last year on the first snow day I put chains on and we loaded up the sleds and found some great hills and played and played outside for most of the day. Today I woke up tired, drained, and in pain and irritated at the mess. Every surface, from the counters to the cupboards to the door knobs to the floor, was sticky with maple syrup. I got the girls breakfast, asked them to please clean up, and went back to bed. What a drag. It must be such a bummer to them to have me so un-energetic. They were both a little pissed at me, but they mostly cleaned up and let me sleep some. I was hoping to keep my doctor's appointment today so I could see what's happening with the drain- I think it's gotten clogged up again. But, he had an emergency surgery during my appointment and the only other time, I was told, was 30 minutes from when I was talking with them on the phone. There was no way I could get the girls together, find a ride, and get across town in the snow in that amount of time. I changed the appointment to tomorrow morning. Not sure if I'll make it with the snow and possibly the kids out of school again. Kind of nervous and relieved about the delay- just that much longer to keep my hair. I only have two people that I'm comfortable enough to ask for help unclogging the drain- my best friend and my boyfriend. I asked the boyfriend to come over and work on unclogging the drain. Such romance. Just before he got here, I was trying to take a nap when Karina began screaming about a dead bird in the hallway. I really, really didn't want to get out of bed to see what was going on, but I had to. Karina was in her room, peering out the door. Kaycee was screeching nearby. Grace the cat had a bird in her mouth and was growling. The bird was not dead. I somehow got the bird into the bathroom and shut the door. I thought about how I'm supposed to be having limited stress so I can be zen-like and full of healing energy. Somehow life happens and doesn't stop for anything, not even cancer. Thankfully God is kind and F showed up and dealt with the bird while we all hid in our rooms. He then stuck around and worked on unclogging the drain. This is done by pinching the tube with one hand, near where it is coming out of my body and squeezing all the gunk down the tube with the other hand. It really, really sucks. It hurts so bad, and my entire arm hurt today just from him touching the drain. The pulling sensation is atrocious. I cussed and cried and yelled and we got through it. We have interesting "dates". The boyfriend must be a saint- he keeps coming back!
Last night was hard because I finished the book, "Cancer is a Bitch", and was feeling so emotional at the end. It's a great book, and I really related to the author's sense of humor and so many of her reactions to cancer and to her kids were so similar to mine. But, it ended with her having some thing on her liver and a cyst on her kidney and having to go in a few times a year for check ups and always wondering if and when and where the cancer might pop up in her body. And, one of her friends had a different kind of cancer at the same time and died. And, I've run into a few people these last few weeks who don't really know what to say to me, so they tell me stories about a sister's best friend's mother's aunt who died from breast cancer and sometimes they even sprinkle in a few horrid details. Or sometimes people will offer me unsolicited medical advice about what I should or should not be doing. So far I just kind of stand there frozen and horrified and feeling awful and not knowing what to say. What I really want to say is "Shut the F... up! I'm sending positive thoughts only into the universe so only positive things will come back to me and you're messing up my concentration!" But, I'm too polite or something, so I say nothing. My sponser helped me today to work on a few polite, short phrases to protect my fragile emotions and get people to stop spouting off crap. I'll work on it. Or I won't leave the house. Or something. I walked into a crowded restaurant this weekend and had the image of a flashing neon sign above my head blaring out "BREAST CANCER". But then I looked at the people in the restaurant and realized that to them, I looked perfectly normal. It felt kind of good to be somewhere anonymous where no one knew about me. At the same time, it also feels good to be surrounded by people who do know and who love me anyway. Even the people who make the insensitive comments I know mean no harm. I think sometimes people just don't know what to say. I know that the few experiences I've had with people I've know who have gotten some sort of horrible diagnosis, I haven't known what to say either. Cancer is awkward, messy, inconvenient, inconsiderate, and irrational.
I took some pain medication, which I had hoped to be done with, and took a nap. The girls let me sleep for a whole hour, and when I got up, we made a ginger bread house together. It was the end of the night, but we finally, finally got a little bit of normal, sweet, family bonding time together. I love those girls- they are so resilient and full of energy and life. I hope they are in school tomorrow!
It snowed and snowed today, beginning at about 1:00 in the morning, when I was tossing and turning, unable to sleep. Lot's of soreness, swelling, and discomfort in the area around the drain last night. I can't sleep on my side and last night it was hard to sleep on my back. Finally gave up and watched a chick flick until about 2:00, then went to sleep. I realized that there would be no school, so I didn't set the alarm. Woke up to screaming, crazy kids and they went out to play while I went back to sleep. They were cold and tired by about 9:00, so I finally had to get up. Walked out of my calm, peaceful bedroom into a house full of wet shoes, boots, socks, pants, shirts, gloves, scarves, jackets, etc, strewn throughout the living room and dining room. The kitchen was full of pots of snow and half a bottle of pricey, real maple syrup had been dumped into the pots. They were making candy. Kaycee was cold and upset that the snow was too dry to make a decent snow man and both girls were really, really wanting me to get dressed and come out to play with them. Last year on the first snow day I put chains on and we loaded up the sleds and found some great hills and played and played outside for most of the day. Today I woke up tired, drained, and in pain and irritated at the mess. Every surface, from the counters to the cupboards to the door knobs to the floor, was sticky with maple syrup. I got the girls breakfast, asked them to please clean up, and went back to bed. What a drag. It must be such a bummer to them to have me so un-energetic. They were both a little pissed at me, but they mostly cleaned up and let me sleep some. I was hoping to keep my doctor's appointment today so I could see what's happening with the drain- I think it's gotten clogged up again. But, he had an emergency surgery during my appointment and the only other time, I was told, was 30 minutes from when I was talking with them on the phone. There was no way I could get the girls together, find a ride, and get across town in the snow in that amount of time. I changed the appointment to tomorrow morning. Not sure if I'll make it with the snow and possibly the kids out of school again. Kind of nervous and relieved about the delay- just that much longer to keep my hair. I only have two people that I'm comfortable enough to ask for help unclogging the drain- my best friend and my boyfriend. I asked the boyfriend to come over and work on unclogging the drain. Such romance. Just before he got here, I was trying to take a nap when Karina began screaming about a dead bird in the hallway. I really, really didn't want to get out of bed to see what was going on, but I had to. Karina was in her room, peering out the door. Kaycee was screeching nearby. Grace the cat had a bird in her mouth and was growling. The bird was not dead. I somehow got the bird into the bathroom and shut the door. I thought about how I'm supposed to be having limited stress so I can be zen-like and full of healing energy. Somehow life happens and doesn't stop for anything, not even cancer. Thankfully God is kind and F showed up and dealt with the bird while we all hid in our rooms. He then stuck around and worked on unclogging the drain. This is done by pinching the tube with one hand, near where it is coming out of my body and squeezing all the gunk down the tube with the other hand. It really, really sucks. It hurts so bad, and my entire arm hurt today just from him touching the drain. The pulling sensation is atrocious. I cussed and cried and yelled and we got through it. We have interesting "dates". The boyfriend must be a saint- he keeps coming back!
Last night was hard because I finished the book, "Cancer is a Bitch", and was feeling so emotional at the end. It's a great book, and I really related to the author's sense of humor and so many of her reactions to cancer and to her kids were so similar to mine. But, it ended with her having some thing on her liver and a cyst on her kidney and having to go in a few times a year for check ups and always wondering if and when and where the cancer might pop up in her body. And, one of her friends had a different kind of cancer at the same time and died. And, I've run into a few people these last few weeks who don't really know what to say to me, so they tell me stories about a sister's best friend's mother's aunt who died from breast cancer and sometimes they even sprinkle in a few horrid details. Or sometimes people will offer me unsolicited medical advice about what I should or should not be doing. So far I just kind of stand there frozen and horrified and feeling awful and not knowing what to say. What I really want to say is "Shut the F... up! I'm sending positive thoughts only into the universe so only positive things will come back to me and you're messing up my concentration!" But, I'm too polite or something, so I say nothing. My sponser helped me today to work on a few polite, short phrases to protect my fragile emotions and get people to stop spouting off crap. I'll work on it. Or I won't leave the house. Or something. I walked into a crowded restaurant this weekend and had the image of a flashing neon sign above my head blaring out "BREAST CANCER". But then I looked at the people in the restaurant and realized that to them, I looked perfectly normal. It felt kind of good to be somewhere anonymous where no one knew about me. At the same time, it also feels good to be surrounded by people who do know and who love me anyway. Even the people who make the insensitive comments I know mean no harm. I think sometimes people just don't know what to say. I know that the few experiences I've had with people I've know who have gotten some sort of horrible diagnosis, I haven't known what to say either. Cancer is awkward, messy, inconvenient, inconsiderate, and irrational.
I took some pain medication, which I had hoped to be done with, and took a nap. The girls let me sleep for a whole hour, and when I got up, we made a ginger bread house together. It was the end of the night, but we finally, finally got a little bit of normal, sweet, family bonding time together. I love those girls- they are so resilient and full of energy and life. I hope they are in school tomorrow!
Saturday, December 13, 2008
Moving Forward
12/13/08
I've rejoined the world a bit this weekend. Yeah! I still have the awful/wonderful drain in, so it makes it hard for me to go out in public. I imagine that everyone looks at me and knows what's under my shirt. But really, who cares? So I went out Friday to a place run by volunteers that gives out free wigs and hats to people with cancer. I brought a friend and am so thankful that I did. It was a creepy experience. The building was old and run down, and the volunteer didn't smile or introduce herself to us. She just led us into a back room with a bunch of wigs and a few hats and scarves. The wigs were creepy and crappy looking. Most of them were grey or silver, and the one long haired curly one was all tangled. I started out with some hats and found a few pretty ones. A lot of them are crocheted and donated and I thought about the people who made them and their kindness. I had to put a pantyhose stocking thing over my hair before I could try anything on. I tried for some humor and pulled it all the way over my face. The stone-faced volunteer wasn't amused. I ended up tucking all of my hair up under the stocking so I could get a better idea of what bald would look like. I tried on a pretty blue hat and with my hair up I could see my neck for the first time. I actually didn't look too bad and I am planning to get a bunch of beautiful, dangly earrings to wear, and maybe I'll even wear make-up sometimes like the hat models do in the catalogues. Its funny, the hat models all have these beautiful, healthy faces and make hats look glamorous and sexy. I have a feeling chemo might not look quite that good on me. Just for fun my friend and I tried on the long-haired, curly, tangled Tina Turner wig. The volunteer, again, was not amused. We got out of there as fast as we could and went to my doctor's office to see about getting my drain unplugged.
No one was around the office on a Friday, just a few office staff and nurse Zach, who looked more like a rugby player than a nurse. He worked on unplugging my drain. For an hour. When my friend works on it, I can only bear it for a few minutes- it is so gross and the tugging aggravates the nerves in my arm and gives me the car sick feeling and I have a tendency to cuss and yell a bit. I wanted to kick Zach a few times, and cuss at him, but I didn't know him well enough. The physician's assistant came in too and talked to me about chemotherapy. I am feeling better and better about it. She suggested I stay as active as possible, including playing soccer once a week. The only time to take it easy is if my blood count is low (or something like that) and that they would be drawing blood once a week to check. Once a week?! She suggested I work 6 hour days and not be an over-achiever during chemo. How well am I going to get to know these people? Luckily I really, really like everyone I've met in this office and the atmosphere is so warm and cozy and unlike a doctor's office, so I actually feel kind of good when I'm there. Weird I know, but its one of the reasons why I picked this center.
Today I went to the holiday market and found a beautiful, soft, velvety bag to hold my hair when it comes off. Its purple and has a leaf pattern on it. It reminds me of the vision I had in the MRI machine of the tree with the fall leaves on it. I guess I'll be more like that tree than I imagined. I'll spend the winter bare and resting, then by summer (I hope I hope), I'll have my new, beautiful hair. Many people have told me that its common for hair to grow back in completely different than before. Maybe mine will be thick and curly, who knows. I've been looking at the winter trees, and there is something so mysterious and magical about them- they look so dead, but everyone knows they are ancient and full of life, just waiting to burst forth after their winter's rest. I'll create some sort of beautiful ceremony for my hair. People tell me I will be forever changed after the cancer experience. Maybe letting go of my hair is letting go of some old part of me that I don't need any more. Maybe when my new, beautiful hair comes back, I'll have some new, beautiful part of me too.
I've rejoined the world a bit this weekend. Yeah! I still have the awful/wonderful drain in, so it makes it hard for me to go out in public. I imagine that everyone looks at me and knows what's under my shirt. But really, who cares? So I went out Friday to a place run by volunteers that gives out free wigs and hats to people with cancer. I brought a friend and am so thankful that I did. It was a creepy experience. The building was old and run down, and the volunteer didn't smile or introduce herself to us. She just led us into a back room with a bunch of wigs and a few hats and scarves. The wigs were creepy and crappy looking. Most of them were grey or silver, and the one long haired curly one was all tangled. I started out with some hats and found a few pretty ones. A lot of them are crocheted and donated and I thought about the people who made them and their kindness. I had to put a pantyhose stocking thing over my hair before I could try anything on. I tried for some humor and pulled it all the way over my face. The stone-faced volunteer wasn't amused. I ended up tucking all of my hair up under the stocking so I could get a better idea of what bald would look like. I tried on a pretty blue hat and with my hair up I could see my neck for the first time. I actually didn't look too bad and I am planning to get a bunch of beautiful, dangly earrings to wear, and maybe I'll even wear make-up sometimes like the hat models do in the catalogues. Its funny, the hat models all have these beautiful, healthy faces and make hats look glamorous and sexy. I have a feeling chemo might not look quite that good on me. Just for fun my friend and I tried on the long-haired, curly, tangled Tina Turner wig. The volunteer, again, was not amused. We got out of there as fast as we could and went to my doctor's office to see about getting my drain unplugged.
No one was around the office on a Friday, just a few office staff and nurse Zach, who looked more like a rugby player than a nurse. He worked on unplugging my drain. For an hour. When my friend works on it, I can only bear it for a few minutes- it is so gross and the tugging aggravates the nerves in my arm and gives me the car sick feeling and I have a tendency to cuss and yell a bit. I wanted to kick Zach a few times, and cuss at him, but I didn't know him well enough. The physician's assistant came in too and talked to me about chemotherapy. I am feeling better and better about it. She suggested I stay as active as possible, including playing soccer once a week. The only time to take it easy is if my blood count is low (or something like that) and that they would be drawing blood once a week to check. Once a week?! She suggested I work 6 hour days and not be an over-achiever during chemo. How well am I going to get to know these people? Luckily I really, really like everyone I've met in this office and the atmosphere is so warm and cozy and unlike a doctor's office, so I actually feel kind of good when I'm there. Weird I know, but its one of the reasons why I picked this center.
Today I went to the holiday market and found a beautiful, soft, velvety bag to hold my hair when it comes off. Its purple and has a leaf pattern on it. It reminds me of the vision I had in the MRI machine of the tree with the fall leaves on it. I guess I'll be more like that tree than I imagined. I'll spend the winter bare and resting, then by summer (I hope I hope), I'll have my new, beautiful hair. Many people have told me that its common for hair to grow back in completely different than before. Maybe mine will be thick and curly, who knows. I've been looking at the winter trees, and there is something so mysterious and magical about them- they look so dead, but everyone knows they are ancient and full of life, just waiting to burst forth after their winter's rest. I'll create some sort of beautiful ceremony for my hair. People tell me I will be forever changed after the cancer experience. Maybe letting go of my hair is letting go of some old part of me that I don't need any more. Maybe when my new, beautiful hair comes back, I'll have some new, beautiful part of me too.
Thursday, December 11, 2008
The Bald Trigger
12/10/08
Ok, I talked it over with B and maybe figured out what my big aversion is to having my head shaved. Aside from the regular aversion any woman would feel (except, of course, Annie Lennox and Sinead O'Connor), shaved heads are a huge army memory trigger for me. When I went into basic training, the men were sent through one door and the women through another of a huge processing building. Inside we were "processed" into the military, given uniforms, boots, dog tags, and everything we needed to become soldiers. We were spit out the other side of the building to wait in a big holding area. I could see all the young men going in the entrance, in various styles of dress, with a wide variety of hair cuts- some long, some short, some curly, some mohawks, etc. All of the guys were very young- 18 or so, many were pimply faced, and all were terrified. We young women felt the same too, and were going through the same thing, with one exception. We weren't getting our heads shaved. The men-boys came out the other side completely bald. They looked sick, scared, and terrible. Their army issue glasses stuck out, their ears stuck out, their pimples stuck out, their adam's apples stuck out. We were all herded through that building with a bunch of drill sergeants yelling at us and making us do push-ups, so there was an air of fear and confusion. It reminded me at the time of scenes I had seen in movies of how the Nazi's would process people into concentration camps. I know, I know, this is extreme, but my imagination is vivid and out of my control most of the time.
So, what I realized today is that I have a lot of fear related to that experience around having my head shaved. I have a picture of it being a chaotic, loud, terrible experience. I called a salon today and talked to the owner about it. She was incredibly kind and gentle with me. So much so that I started crying on the phone. It was embarrassing, but she just got more patient with me and really took her time. In the army, I would have been doing push-ups and getting yelled at for crying. This woman explained that I would come in first and she would help me select a wig. She would be able to match my style and color if that's what I wanted. Then, when I was ready, I would come back and she would shave it in the back room, and I would leave with the wig on. I know this experience is NOT going to be like what I saw in basic training. I am also going tomorrow to look at some scarves and hats that the cancer society gives away. It's going to be ok. I am going to keep my hair in some sort of pretty, silky bag and figure out some sort of ritual to do with it later. I might like to get all dressed up and go out with friends the evening I have it done. Or I might go home and cry. or I might do both. I might ask a friend or two to sit with me during the shaving, or I might do it alone. I don't know yet.
After spending the morning in bed, I got up and got a shower and got dressed. I went for another walk. A friend from work stopped by and walked with me and she had bought the SAME shoes as me- the ones designed by the teenaged cancer survivor. She put them on and I put mine on and it was so incredibly nice to be outside. It was a beautiful winter day today. I got home and was full of energy. I've been working my arm throughout the day. I was able to clean up the house a bit, run the vacuum, and even do a load of laundry, including folding and putting away! I hit the exhausted, pain wall around 7:00 and Kaycee and I crawled into bed and watched Frosty the Snowman. Karina got to go to a women's Duck basketball practice and out to dinner with the coach (she was SO thrilled!), so Kaycee and i got some much needed alone time. Karina and I have some special time planned for tomorrow evening.
The day started out pretty dark, but has ended with me in a place of peace, acceptance, and hope.
Ok, I talked it over with B and maybe figured out what my big aversion is to having my head shaved. Aside from the regular aversion any woman would feel (except, of course, Annie Lennox and Sinead O'Connor), shaved heads are a huge army memory trigger for me. When I went into basic training, the men were sent through one door and the women through another of a huge processing building. Inside we were "processed" into the military, given uniforms, boots, dog tags, and everything we needed to become soldiers. We were spit out the other side of the building to wait in a big holding area. I could see all the young men going in the entrance, in various styles of dress, with a wide variety of hair cuts- some long, some short, some curly, some mohawks, etc. All of the guys were very young- 18 or so, many were pimply faced, and all were terrified. We young women felt the same too, and were going through the same thing, with one exception. We weren't getting our heads shaved. The men-boys came out the other side completely bald. They looked sick, scared, and terrible. Their army issue glasses stuck out, their ears stuck out, their pimples stuck out, their adam's apples stuck out. We were all herded through that building with a bunch of drill sergeants yelling at us and making us do push-ups, so there was an air of fear and confusion. It reminded me at the time of scenes I had seen in movies of how the Nazi's would process people into concentration camps. I know, I know, this is extreme, but my imagination is vivid and out of my control most of the time.
So, what I realized today is that I have a lot of fear related to that experience around having my head shaved. I have a picture of it being a chaotic, loud, terrible experience. I called a salon today and talked to the owner about it. She was incredibly kind and gentle with me. So much so that I started crying on the phone. It was embarrassing, but she just got more patient with me and really took her time. In the army, I would have been doing push-ups and getting yelled at for crying. This woman explained that I would come in first and she would help me select a wig. She would be able to match my style and color if that's what I wanted. Then, when I was ready, I would come back and she would shave it in the back room, and I would leave with the wig on. I know this experience is NOT going to be like what I saw in basic training. I am also going tomorrow to look at some scarves and hats that the cancer society gives away. It's going to be ok. I am going to keep my hair in some sort of pretty, silky bag and figure out some sort of ritual to do with it later. I might like to get all dressed up and go out with friends the evening I have it done. Or I might go home and cry. or I might do both. I might ask a friend or two to sit with me during the shaving, or I might do it alone. I don't know yet.
After spending the morning in bed, I got up and got a shower and got dressed. I went for another walk. A friend from work stopped by and walked with me and she had bought the SAME shoes as me- the ones designed by the teenaged cancer survivor. She put them on and I put mine on and it was so incredibly nice to be outside. It was a beautiful winter day today. I got home and was full of energy. I've been working my arm throughout the day. I was able to clean up the house a bit, run the vacuum, and even do a load of laundry, including folding and putting away! I hit the exhausted, pain wall around 7:00 and Kaycee and I crawled into bed and watched Frosty the Snowman. Karina got to go to a women's Duck basketball practice and out to dinner with the coach (she was SO thrilled!), so Kaycee and i got some much needed alone time. Karina and I have some special time planned for tomorrow evening.
The day started out pretty dark, but has ended with me in a place of peace, acceptance, and hope.
More Emotions??!!
12/11/08
What a weird day yesterday. I got home feeling great and motivated. Karina went with me for my first walk. I think we were both a little surprised at how slow I needed to go. I hadn't had any pain medication since before the dr. appt, and I began hurting half way through the walk. But, it was SO nice to be outside, and it was a beautiful, clear, crisp day. When we got home, there was a nice surprise- a friend had sent a cleaning lady for me! I had a lot of visitors in the afternoon, and I was pretty talkative, but at some point, I hit a wall and got so exhausted and was in pain, so I took some more medication and laid down for a bit. Once the kids were in bed and everyone was gone, I realized that I was very, very sad. And I realized that I was feeling so guilty for feeling sad, so I kept trying to stuff the sad away and regain the happy from earlier. Of course it was a losing battle, and I cried and cried. I think I was crying for my hair and for the drain coming out soon and for the no more operations. All of these things mean that chemo is starting soon. I have as much fear of chemo as I did of the surgeries. So of course I know that I will get through it just as I did the surgeries, and it probably won't be as bad as the fear of the unknown. But, that knowledge doesn't make a bit of difference to my emotions so the tears came anyway. I stood in front of the mirror and tried to imagine what I'll look like with no hair. I discovered that there is no way to imagine it- I have no idea. And it doesn't really matter- I am still me, no matter what I look like. And, it will be a temporary condition. But again, my intellect was powerless over my emotions last night. No matter how much of a positive spin I put on how cool a wig could be- dream hair and all- it still really, really, really SUCKS! And, of course I'm IMMENSELY grateful for the chemo because I know it is my chance at surviving cancer and living a long, healthy life and getting to know my grandkids and maybe even my great grandkids. The girls overheard some of my wig/hat/scarf talk and they are mortified to think I would consider a wig that made me look totally different- they want me to look just the same. The truth is, I want to look just the same too. I want to BE just the same. But, even without the cancer, life never lets us remain stagnant.
What a weird day yesterday. I got home feeling great and motivated. Karina went with me for my first walk. I think we were both a little surprised at how slow I needed to go. I hadn't had any pain medication since before the dr. appt, and I began hurting half way through the walk. But, it was SO nice to be outside, and it was a beautiful, clear, crisp day. When we got home, there was a nice surprise- a friend had sent a cleaning lady for me! I had a lot of visitors in the afternoon, and I was pretty talkative, but at some point, I hit a wall and got so exhausted and was in pain, so I took some more medication and laid down for a bit. Once the kids were in bed and everyone was gone, I realized that I was very, very sad. And I realized that I was feeling so guilty for feeling sad, so I kept trying to stuff the sad away and regain the happy from earlier. Of course it was a losing battle, and I cried and cried. I think I was crying for my hair and for the drain coming out soon and for the no more operations. All of these things mean that chemo is starting soon. I have as much fear of chemo as I did of the surgeries. So of course I know that I will get through it just as I did the surgeries, and it probably won't be as bad as the fear of the unknown. But, that knowledge doesn't make a bit of difference to my emotions so the tears came anyway. I stood in front of the mirror and tried to imagine what I'll look like with no hair. I discovered that there is no way to imagine it- I have no idea. And it doesn't really matter- I am still me, no matter what I look like. And, it will be a temporary condition. But again, my intellect was powerless over my emotions last night. No matter how much of a positive spin I put on how cool a wig could be- dream hair and all- it still really, really, really SUCKS! And, of course I'm IMMENSELY grateful for the chemo because I know it is my chance at surviving cancer and living a long, healthy life and getting to know my grandkids and maybe even my great grandkids. The girls overheard some of my wig/hat/scarf talk and they are mortified to think I would consider a wig that made me look totally different- they want me to look just the same. The truth is, I want to look just the same too. I want to BE just the same. But, even without the cancer, life never lets us remain stagnant.
Wednesday, December 10, 2008
GREAT NEWS!!!!!!!!!
Just got back from my appointment. There was NO CANCER in any of the other lymph nodes taken out- just in the very first one. And there was NO CANCER in any of the additional breast tissue taken out, and he got enough out that at this point, NO MORE SURGERY!!! Its so nice to have some good news!
My drain is still in, but may come out Friday or Monday. Dr. T looked at how I was guarding my arm and told me, "YOU'RE NOT SICK! IT"S TIME TO GET OUT OF SICK THINKING! MOVE THAT ARM!!" I sort of protested, "but I'm afraid of the pain" and he told me that if I don't start moving it, my shoulder will freeze up and then I'll really know what pain is. He showed me how to move it back and forth, not side to side. He also showed me how to REALLY strip the tube on my drain so it doesn't get clogged up. F was with me and as soon as Dr. T left the room, he got all excited and had me start moving my arm. He'll be a good motivator for me.
The next step is to get the drain out, then hear all about the types of chemo I'll be getting, then meet with the nurses and get an "intro to chemo" session, then wait for insurance to approve paying for chemo. (I can't even begin to describe my feelings of relief and gratitude that I have insurance that will pay for this. And my feelings of despair and anger for those people who don't have insurance. There have been long stretches of time in my life when I've been without insurance and it angers me to think that if this had happened then, I might have really suffered. And in such a wealthy country. Well, I could go on and on on that subject, but I'll save it for another time and place). Then, I'll be ready to start. Possibly by the end of next week, but I'm hoping not till the following week. I'm planning a tiny get away and I'd SO like to have one more moment of normal before chemo begins. Dr. T wouldn't talk about the chemo at this appointment, but I did ask if I'd be getting the kind that causes me to lose my hair. He gave me a long, long answer that ended up meaning yes, within a week of the first treatment. He said that the best kind of chemo for me is the kind that causes hair loss. He strongly suggested that I take some time very soon to decide about a wig or not, then make an appointment ahead of time to have my head shaved so that I'd be in control of when, where, and how I will lose my hair.
After I left, I went back to the nurses station to get weighed and measured and saw Mrs. T (doctor's wife and teacher of the mind/body class). She weighed me then took me into a back room where there were 3 donated wigs- they belonged to past people and she said I could have one if I wanted. Or, I could go to Utopia and have one made for me. Or a few other options. I looked at one of the free wigs and it looked so much like a........fake piece of hair. Again, I'm thinking Halloween costume. I couldn't continue as it is upsetting to me to think about being bald. It may be vanity, I don't know. Just something for me to work through. I know the bigger picture here has nothing to do with my hair. It has to do with survival. Its still hard sometimes to believe that this is really happening to me and that this is really my life.
The bone scan showed a bit of arthritis in my right knee. I had to laugh a little because I had no idea and no symptoms. I'll get an ultra sound to check out my ovaries. And hope and hope that the cancer hasn't spread anywhere else. Dr. T said there are two ways for it to spread- through the lymph system and through the blood system. My lymph should be clear. No idea about the blood way. He said if it was going to spread, it would have already happened and it either will or won't show up someplace else in the future. No way of knowing that now. So, I get to live each day as if its a HUGE, AMAZING, WONDERFUL GIFT, for the rest of my life. Not such a bad way to live actually.
I'm going to eat, rest, then WALK for the first time today. Time to be done being sick!
My drain is still in, but may come out Friday or Monday. Dr. T looked at how I was guarding my arm and told me, "YOU'RE NOT SICK! IT"S TIME TO GET OUT OF SICK THINKING! MOVE THAT ARM!!" I sort of protested, "but I'm afraid of the pain" and he told me that if I don't start moving it, my shoulder will freeze up and then I'll really know what pain is. He showed me how to move it back and forth, not side to side. He also showed me how to REALLY strip the tube on my drain so it doesn't get clogged up. F was with me and as soon as Dr. T left the room, he got all excited and had me start moving my arm. He'll be a good motivator for me.
The next step is to get the drain out, then hear all about the types of chemo I'll be getting, then meet with the nurses and get an "intro to chemo" session, then wait for insurance to approve paying for chemo. (I can't even begin to describe my feelings of relief and gratitude that I have insurance that will pay for this. And my feelings of despair and anger for those people who don't have insurance. There have been long stretches of time in my life when I've been without insurance and it angers me to think that if this had happened then, I might have really suffered. And in such a wealthy country. Well, I could go on and on on that subject, but I'll save it for another time and place). Then, I'll be ready to start. Possibly by the end of next week, but I'm hoping not till the following week. I'm planning a tiny get away and I'd SO like to have one more moment of normal before chemo begins. Dr. T wouldn't talk about the chemo at this appointment, but I did ask if I'd be getting the kind that causes me to lose my hair. He gave me a long, long answer that ended up meaning yes, within a week of the first treatment. He said that the best kind of chemo for me is the kind that causes hair loss. He strongly suggested that I take some time very soon to decide about a wig or not, then make an appointment ahead of time to have my head shaved so that I'd be in control of when, where, and how I will lose my hair.
After I left, I went back to the nurses station to get weighed and measured and saw Mrs. T (doctor's wife and teacher of the mind/body class). She weighed me then took me into a back room where there were 3 donated wigs- they belonged to past people and she said I could have one if I wanted. Or, I could go to Utopia and have one made for me. Or a few other options. I looked at one of the free wigs and it looked so much like a........fake piece of hair. Again, I'm thinking Halloween costume. I couldn't continue as it is upsetting to me to think about being bald. It may be vanity, I don't know. Just something for me to work through. I know the bigger picture here has nothing to do with my hair. It has to do with survival. Its still hard sometimes to believe that this is really happening to me and that this is really my life.
The bone scan showed a bit of arthritis in my right knee. I had to laugh a little because I had no idea and no symptoms. I'll get an ultra sound to check out my ovaries. And hope and hope that the cancer hasn't spread anywhere else. Dr. T said there are two ways for it to spread- through the lymph system and through the blood system. My lymph should be clear. No idea about the blood way. He said if it was going to spread, it would have already happened and it either will or won't show up someplace else in the future. No way of knowing that now. So, I get to live each day as if its a HUGE, AMAZING, WONDERFUL GIFT, for the rest of my life. Not such a bad way to live actually.
I'm going to eat, rest, then WALK for the first time today. Time to be done being sick!
The Next Step
12/10/08
One day at a time is a very common saying in Alanon. Its what's been getting me through the past month. If I focus only on the next test, or the next doctor's appointment, it keeps things more manageable for me. Since Thursday, I've just been focuses on resting and keeping my pain under control. My arm pain has eased up so much that I have been able to slow down on the pain medication. As my arm pain decreases, I've begun to notice the pain in the other areas- my breast and the area where the port is in place. But, this is mostly annoying pain, not crying pain, so it is not too bad. I still feel like I have to walk slowly so as not to jiggle anything.
The flax bags have helped so much. I am astounded at how quickly I got 4 very nice ones. One even came from a woman who has never read my blog and had no idea I wanted one. She just made one out of the blue for me, and it just happened to be exactly as I'd described in my blog. I'm liking this act of putting a need out to the universe and having the universe provide for me.
I got out of the house for the first time yesterday. First, I went into my backyard and touched the grass with my bare foot. It is so cold now! Then, I went to my mind/body class last night. The car ride was hard- the bumps aggravated my pain, and I took another pill once I got there. I really hate the groggy, out of touch feeling the pills give me, but I was determined to go to this class. We learned a second breathing technique and a great relaxation technique. During the guided relaxation, I was able to get back into the same type of zone I was in during the MRI. No great visions this time though- I think the drugs interfere with those. But, I was so calm and peaceful by the end and I slept quite well last night. I was able to get my own shirt off last night without help! Some occupational therapist friends from work visited yesterday and I got some tips on how to dress and undress using my good arm. And, I'm getting better and better and being a lefty- I can eat without spilling too much now!
I'm waiting now for F to pick me up for my doctor's appointment. The doc will look at the drain today and I'm hoping that it'll be time for it to come out. Not much is draining now, so either I'm almost done, or its clogged up somewhere. The drain comes out of my body under my arm and near my back, so I can't see where it starts unless I'm in front of a mirror and I twist around. But, I'm not doing any twisting these days, so I'm not sure what's happening with it. It really freaks me out to picture it stitched into my skin, so I haven't tried very hard to look at it. I also may get the pathology results today if they're back. This is where I learn about what was found in my lymph nodes, meaning how many other nodes (if any) had cancer in them. I think the type of chemotherapy I get is dependent on what is discovered in my nodes. I am visualizing cancer free nodes so I can have less aggressive chemotherapy. I'm visualizing the type of chemo that kills all the cancer, but spares my hair. I thought at first that I wouldn't mind too much losing my hair, but as the possibility gets closer, it turns out that I do mind. I am really hoping that I will have at least a few days when I'm healed up from the surgery enough to get outside and enjoy some holiday activities before I start chemo. I've heard from a few women recently who have had pretty positive chemo experiences, so I'm visualizing that for me too. Although I'm dreading beginning, I'm also eager to start so I can be finished that much sooner.
I looked at my body yesterday. It's hard to look, but it's my body and I've got to keep loving it. My thoughts are so impulsive- they always go to the sensationalism first, then I have to rein them in. When I looked, a flashing neon movie title flashed through my head: "SLASHER!" But, I pushed that aside and really looked. I have a small scar on the upper left part of my chest and a small bump where the port is located under the skin. Its covered with steri-strips right now. I have the same scar on my breast as before, covered in steri-strips. The difference is that its raised up now and puckered and swollen and red. I have a long scar under my arm that I can't really see too well because I can't raise up my arm. It looks like that area is purple from bruising. And I have the tube hanging down my back. I can kind of pretend I'm the bionic woman-I have parts that are not my own that will make me stronger, faster, blah blah blah.
Ok, let me end on a positive note so the universe can create for me what I want for myself: I AM HEALTHY, WHOLE, HEALED, AND BEAUTIFUL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
One day at a time is a very common saying in Alanon. Its what's been getting me through the past month. If I focus only on the next test, or the next doctor's appointment, it keeps things more manageable for me. Since Thursday, I've just been focuses on resting and keeping my pain under control. My arm pain has eased up so much that I have been able to slow down on the pain medication. As my arm pain decreases, I've begun to notice the pain in the other areas- my breast and the area where the port is in place. But, this is mostly annoying pain, not crying pain, so it is not too bad. I still feel like I have to walk slowly so as not to jiggle anything.
The flax bags have helped so much. I am astounded at how quickly I got 4 very nice ones. One even came from a woman who has never read my blog and had no idea I wanted one. She just made one out of the blue for me, and it just happened to be exactly as I'd described in my blog. I'm liking this act of putting a need out to the universe and having the universe provide for me.
I got out of the house for the first time yesterday. First, I went into my backyard and touched the grass with my bare foot. It is so cold now! Then, I went to my mind/body class last night. The car ride was hard- the bumps aggravated my pain, and I took another pill once I got there. I really hate the groggy, out of touch feeling the pills give me, but I was determined to go to this class. We learned a second breathing technique and a great relaxation technique. During the guided relaxation, I was able to get back into the same type of zone I was in during the MRI. No great visions this time though- I think the drugs interfere with those. But, I was so calm and peaceful by the end and I slept quite well last night. I was able to get my own shirt off last night without help! Some occupational therapist friends from work visited yesterday and I got some tips on how to dress and undress using my good arm. And, I'm getting better and better and being a lefty- I can eat without spilling too much now!
I'm waiting now for F to pick me up for my doctor's appointment. The doc will look at the drain today and I'm hoping that it'll be time for it to come out. Not much is draining now, so either I'm almost done, or its clogged up somewhere. The drain comes out of my body under my arm and near my back, so I can't see where it starts unless I'm in front of a mirror and I twist around. But, I'm not doing any twisting these days, so I'm not sure what's happening with it. It really freaks me out to picture it stitched into my skin, so I haven't tried very hard to look at it. I also may get the pathology results today if they're back. This is where I learn about what was found in my lymph nodes, meaning how many other nodes (if any) had cancer in them. I think the type of chemotherapy I get is dependent on what is discovered in my nodes. I am visualizing cancer free nodes so I can have less aggressive chemotherapy. I'm visualizing the type of chemo that kills all the cancer, but spares my hair. I thought at first that I wouldn't mind too much losing my hair, but as the possibility gets closer, it turns out that I do mind. I am really hoping that I will have at least a few days when I'm healed up from the surgery enough to get outside and enjoy some holiday activities before I start chemo. I've heard from a few women recently who have had pretty positive chemo experiences, so I'm visualizing that for me too. Although I'm dreading beginning, I'm also eager to start so I can be finished that much sooner.
I looked at my body yesterday. It's hard to look, but it's my body and I've got to keep loving it. My thoughts are so impulsive- they always go to the sensationalism first, then I have to rein them in. When I looked, a flashing neon movie title flashed through my head: "SLASHER!" But, I pushed that aside and really looked. I have a small scar on the upper left part of my chest and a small bump where the port is located under the skin. Its covered with steri-strips right now. I have the same scar on my breast as before, covered in steri-strips. The difference is that its raised up now and puckered and swollen and red. I have a long scar under my arm that I can't really see too well because I can't raise up my arm. It looks like that area is purple from bruising. And I have the tube hanging down my back. I can kind of pretend I'm the bionic woman-I have parts that are not my own that will make me stronger, faster, blah blah blah.
Ok, let me end on a positive note so the universe can create for me what I want for myself: I AM HEALTHY, WHOLE, HEALED, AND BEAUTIFUL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Sunday, December 7, 2008
Sucking it up
12/7/08
"Suck it up and drive on!" is a term used in the army when someone is whining about being tired or cold or hungry or what ever and the sergeant is yelling at the person in order to "motivate" him to keep going. I use it with Kaycee sometimes when she is whining about cleaning her room, and she will sometimes cry, "I know I need to suck it up Mama, but its hard!"
I'm learning to not "suck it up" ("it" being the emotion and the sucking being the stuffing of the emotion) but to keep driving on. The pain in my arm has released some more grief for me, and led me to reach out some more for help. Not too long after my earlier posting, a friend loaned me two great flax seed pillows, which she delivered and heated up and I have had on my arm on and off throughout the day. Then my mom let me know that she ordered a big one for me- thanks mom!
The kids went off today, Kaycee was not having a good morning at all, but she went anyway. I was in bed trying to rest when the pain came again. I ended up having two friends over for most of the afternoon and it was just so very nice having company and having kind people take care of me. Thank you D and R for your companionship and your kindness. Before they came over, I started crying and couldn't stop again. The same thing happened last night. I have been trying so hard to do the positive visualizations and have been picturing me paddling my kayak with two good strong arms. But, once the pain kicks in its very hard to hold this image and it gets replaced with fears that this pain might be permanent. I called the doctor on call again at 1:00 in the morning and he said that it is probably being caused by the drain tube being placed in a way that aggravates the nerves and that once the tube comes out, the pain would probably be gone. This made sense to me today, because whenever the clots are squeezed to break them up, I get the zinging feeling in my arm.
I tried to be done with the pain medication today, but it didn't work. I looked back at my old postings to see where I was at last time on day 3 after the surgery, and while I was off pain medication, I still hadn't left the house yet. The difference last time was that my surgery was on a Tuesday and by Saturday I had my first outing. This time surgery was on Thursday and I've been in bed all weekend. I'm working on being patient and letting the healing happen. D told me that as a general rule, people need one week per day spent in the hospital to recover. Ok, as long as I know its going to end, I can wait. Although a part of me doesn't want the drain to be removed because once its removed, that means I can start chemotherapy and I'm not too thrilled about that.
A friend at work gave me an image that has been so helpful- she said to picture chemo and other medications as just washing through my body, doing their job, and washing out again. I've been drinking a LOT of water in hopes of flushing all the medication out of my system and I like the thought that it isn't staying in there.
The surgery was different this time because it was so early in the morning and I didn't have any other stuff to do first. Once I got checked in, it went very fast. I had the sudden inspiration to ask the anesthesiologist to do my IV instead of the nurse, and I visualized good, plump veins again, and it was the easiest IV ever- just barely a prick and it was done. He put in some Verced which left me fully aware, but very calm. I remember going into the operating room and being introduced to everyone and not being afraid. I had told the doctor and my nurse my fears and past experience in recovery, and someone made it a point to share this information with the recovery room nurse and she was such an angel. When I woke up the curtains were drawn around me and while I don't remember much, I do remember her kind, calm voice and very little pain. They also let me keep a few things in my hand right into the operating room, and she put them back into my hand right when I woke up- a picture of me with Kaycee and Karina in my childhood fort, and my lavender crystal. They didn't make fun of me or anything- just made sure I was safe and comfortable. After recovery I went straight to my hospital room where my friend D and my sponsor, B, were waiting. They tell me now that they were both in there for a few hours, but I only remember a few minutes. At some point my boyfriend F came in and I remember him reading to me from the "Succulent Wild Woman" book and laughing at his joke about reading the "Succulent Wild Man" book next. I remember him rubbing my feet and not much else. He was there for a few hours too I"m told. I remember the kindest nurse and nurse assistant coming in and out. I was not physically comfortable at all, and the bed was very narrow (well, compared to my king sized bed anyway). D stayed the night with me in the hospital room and she must have adjusted my bed and my pillows for me 50 times throughout the night. I remember thinking that she would get tired of me asking, but she never did. Nurses are such patient, caring people. I remember being really thirsty and having a sore throat from the tube being in there during surgery. I drank so much water, and I kept having to get up to go to the bathroom. Which sucked because it was usually just when the bed and pillows finally got adjusted right. I had to have someone help me get my underwear off each time, and then back on again. It is pretty humbling to get to a place where you've got to rely on another human being to put your undies on and off. It is also a place of extreme gratitude for those people.
I've got the car sick feeling. More later.
"Suck it up and drive on!" is a term used in the army when someone is whining about being tired or cold or hungry or what ever and the sergeant is yelling at the person in order to "motivate" him to keep going. I use it with Kaycee sometimes when she is whining about cleaning her room, and she will sometimes cry, "I know I need to suck it up Mama, but its hard!"
I'm learning to not "suck it up" ("it" being the emotion and the sucking being the stuffing of the emotion) but to keep driving on. The pain in my arm has released some more grief for me, and led me to reach out some more for help. Not too long after my earlier posting, a friend loaned me two great flax seed pillows, which she delivered and heated up and I have had on my arm on and off throughout the day. Then my mom let me know that she ordered a big one for me- thanks mom!
The kids went off today, Kaycee was not having a good morning at all, but she went anyway. I was in bed trying to rest when the pain came again. I ended up having two friends over for most of the afternoon and it was just so very nice having company and having kind people take care of me. Thank you D and R for your companionship and your kindness. Before they came over, I started crying and couldn't stop again. The same thing happened last night. I have been trying so hard to do the positive visualizations and have been picturing me paddling my kayak with two good strong arms. But, once the pain kicks in its very hard to hold this image and it gets replaced with fears that this pain might be permanent. I called the doctor on call again at 1:00 in the morning and he said that it is probably being caused by the drain tube being placed in a way that aggravates the nerves and that once the tube comes out, the pain would probably be gone. This made sense to me today, because whenever the clots are squeezed to break them up, I get the zinging feeling in my arm.
I tried to be done with the pain medication today, but it didn't work. I looked back at my old postings to see where I was at last time on day 3 after the surgery, and while I was off pain medication, I still hadn't left the house yet. The difference last time was that my surgery was on a Tuesday and by Saturday I had my first outing. This time surgery was on Thursday and I've been in bed all weekend. I'm working on being patient and letting the healing happen. D told me that as a general rule, people need one week per day spent in the hospital to recover. Ok, as long as I know its going to end, I can wait. Although a part of me doesn't want the drain to be removed because once its removed, that means I can start chemotherapy and I'm not too thrilled about that.
A friend at work gave me an image that has been so helpful- she said to picture chemo and other medications as just washing through my body, doing their job, and washing out again. I've been drinking a LOT of water in hopes of flushing all the medication out of my system and I like the thought that it isn't staying in there.
The surgery was different this time because it was so early in the morning and I didn't have any other stuff to do first. Once I got checked in, it went very fast. I had the sudden inspiration to ask the anesthesiologist to do my IV instead of the nurse, and I visualized good, plump veins again, and it was the easiest IV ever- just barely a prick and it was done. He put in some Verced which left me fully aware, but very calm. I remember going into the operating room and being introduced to everyone and not being afraid. I had told the doctor and my nurse my fears and past experience in recovery, and someone made it a point to share this information with the recovery room nurse and she was such an angel. When I woke up the curtains were drawn around me and while I don't remember much, I do remember her kind, calm voice and very little pain. They also let me keep a few things in my hand right into the operating room, and she put them back into my hand right when I woke up- a picture of me with Kaycee and Karina in my childhood fort, and my lavender crystal. They didn't make fun of me or anything- just made sure I was safe and comfortable. After recovery I went straight to my hospital room where my friend D and my sponsor, B, were waiting. They tell me now that they were both in there for a few hours, but I only remember a few minutes. At some point my boyfriend F came in and I remember him reading to me from the "Succulent Wild Woman" book and laughing at his joke about reading the "Succulent Wild Man" book next. I remember him rubbing my feet and not much else. He was there for a few hours too I"m told. I remember the kindest nurse and nurse assistant coming in and out. I was not physically comfortable at all, and the bed was very narrow (well, compared to my king sized bed anyway). D stayed the night with me in the hospital room and she must have adjusted my bed and my pillows for me 50 times throughout the night. I remember thinking that she would get tired of me asking, but she never did. Nurses are such patient, caring people. I remember being really thirsty and having a sore throat from the tube being in there during surgery. I drank so much water, and I kept having to get up to go to the bathroom. Which sucked because it was usually just when the bed and pillows finally got adjusted right. I had to have someone help me get my underwear off each time, and then back on again. It is pretty humbling to get to a place where you've got to rely on another human being to put your undies on and off. It is also a place of extreme gratitude for those people.
I've got the car sick feeling. More later.
Help
12/7/08
A call for help: I am in need of two flax seed pillow type things. Something is going on with the nerves in my arm and when I move it a certain way, or sometimes just because, I get a shooting,throbbing pain all through my arm and hand. Last night I tried wrapping it in a hot, wet towel, then resting it on Kaycee's heated up flax seed doll, with Karina's flax seed doll on top. This gives me relief until the pain medication kicks in. I'm not sure who all is reading this, but if anyone wants to help, here's what I'm needing:: Two flax pillows, a bit longer than my forearm and a bit wider than my arm, pretty heavy because the weight helps, made out of a very soft flannel type of material. If they had something calming, like lavender inside, that would be great to help me calm down until the pain goes away.
Thanks to anyone who can help!
And, a big, HUGE thank you to the many, many people who have stepped in to help me and the girls in so many ways. I am in awe of the amount of love, care, and help that has flowed our way. This is such a big, scary thing for me and each time I receive a kindness from someone, it pushes the fear away a little bit more.
A call for help: I am in need of two flax seed pillow type things. Something is going on with the nerves in my arm and when I move it a certain way, or sometimes just because, I get a shooting,throbbing pain all through my arm and hand. Last night I tried wrapping it in a hot, wet towel, then resting it on Kaycee's heated up flax seed doll, with Karina's flax seed doll on top. This gives me relief until the pain medication kicks in. I'm not sure who all is reading this, but if anyone wants to help, here's what I'm needing:: Two flax pillows, a bit longer than my forearm and a bit wider than my arm, pretty heavy because the weight helps, made out of a very soft flannel type of material. If they had something calming, like lavender inside, that would be great to help me calm down until the pain goes away.
Thanks to anyone who can help!
And, a big, HUGE thank you to the many, many people who have stepped in to help me and the girls in so many ways. I am in awe of the amount of love, care, and help that has flowed our way. This is such a big, scary thing for me and each time I receive a kindness from someone, it pushes the fear away a little bit more.
Saturday, December 6, 2008
First Shower/Bandages Off
12/6/08
Last night was a hard night. Lots of pain in my arm with a numb/swollen feeling. The pain medication would work for a few hours, then wear off before I could take more. I never got into a deep sleep- just cat naps. Finally, around 2 or 3 am, I got online and looked up the Unity website so I could put in a prayer request for healing. I ended up calling a number, thinking I would leave a message, and a real person answered. I learned that their prayer line is staffed 24 hours a day and is never closed. This woman was like an angel and she prayed with me and I felt such peace afterwards. She put my name in a place at Unity Village where for 30 days people will pray for me. I do believe in the power of prayer, and I also believe that it is the opposite of laying in bed feeling helpless and hopeless. On the website there are also some guided meditations that I was able to listen to that helped me relax and I was able to sleep much better, despite the pain.
The site is www.unityonline.org It saved my sanity last night.
I put in a call to the doctor on call this morning just to see if the arm pain was normal. He called back within a few minutes of my message and talked to me for quite a bit. I felt reassured afterwards. The girls went off with friends today and got to do some fun activities. I called a friend and she said she could do distance Reiki for me. After our phone call, I went into a deep, restful sleep for about 3 hours. I woke up and had D remove my bandages and help me with my first shower. It was a bit freaky- I held onto my drain and did the best I could, but I felt very vulnerable and icky. I caught a glimpse of the new and improved scar (bigger) and of the port-a-cath area. I can't do more than glance at these at this point. I'm feeing sad and overwhelmed right now. Took some more pain medication and I'm back in bed. Its that feeling of knowing I just went through a second something big, and now the next thing is coming up. Dr. T. did tell me that he got the results of my CT and bone scan and that there was nothing of concern. Although he did see a few things- possible arthritis somewhere in my bones and one other thing, but he is confident that its nothing related to the cancer. He did end up needing to cut a nerve in my arm, hence the numbness.
I've been working throughout the day on visualizing a healed, whole, functional arm and a quick healing from the surgery. Again, whether this visualization works or not I don't know. But I do know it gives me something to do while I'm laying in bed and it makes me feel positive and peaceful.
Time to rest. More later.
Last night was a hard night. Lots of pain in my arm with a numb/swollen feeling. The pain medication would work for a few hours, then wear off before I could take more. I never got into a deep sleep- just cat naps. Finally, around 2 or 3 am, I got online and looked up the Unity website so I could put in a prayer request for healing. I ended up calling a number, thinking I would leave a message, and a real person answered. I learned that their prayer line is staffed 24 hours a day and is never closed. This woman was like an angel and she prayed with me and I felt such peace afterwards. She put my name in a place at Unity Village where for 30 days people will pray for me. I do believe in the power of prayer, and I also believe that it is the opposite of laying in bed feeling helpless and hopeless. On the website there are also some guided meditations that I was able to listen to that helped me relax and I was able to sleep much better, despite the pain.
The site is www.unityonline.org It saved my sanity last night.
I put in a call to the doctor on call this morning just to see if the arm pain was normal. He called back within a few minutes of my message and talked to me for quite a bit. I felt reassured afterwards. The girls went off with friends today and got to do some fun activities. I called a friend and she said she could do distance Reiki for me. After our phone call, I went into a deep, restful sleep for about 3 hours. I woke up and had D remove my bandages and help me with my first shower. It was a bit freaky- I held onto my drain and did the best I could, but I felt very vulnerable and icky. I caught a glimpse of the new and improved scar (bigger) and of the port-a-cath area. I can't do more than glance at these at this point. I'm feeing sad and overwhelmed right now. Took some more pain medication and I'm back in bed. Its that feeling of knowing I just went through a second something big, and now the next thing is coming up. Dr. T. did tell me that he got the results of my CT and bone scan and that there was nothing of concern. Although he did see a few things- possible arthritis somewhere in my bones and one other thing, but he is confident that its nothing related to the cancer. He did end up needing to cut a nerve in my arm, hence the numbness.
I've been working throughout the day on visualizing a healed, whole, functional arm and a quick healing from the surgery. Again, whether this visualization works or not I don't know. But I do know it gives me something to do while I'm laying in bed and it makes me feel positive and peaceful.
Time to rest. More later.
Friday, December 5, 2008
Back Home
12/5/08
Back home today. Not much sleep in the hospital, but it was so nice to be taken care of there. Much better surgery experience this time. Practiced positive visualizations and only the best, most compassionate nurses and doctors. Another very easy IV. Not freaked out at all during surgery/recovery- Anestheseologist hooked me up with some good drugs for anxiety and pain. Recovering well, resting a lot. Dealing with the drain. Not as bad as I expected cleaning it out, but a pain keeping track of it and keeping it pinned and out of my way. Arm really sore. More later.
Back home today. Not much sleep in the hospital, but it was so nice to be taken care of there. Much better surgery experience this time. Practiced positive visualizations and only the best, most compassionate nurses and doctors. Another very easy IV. Not freaked out at all during surgery/recovery- Anestheseologist hooked me up with some good drugs for anxiety and pain. Recovering well, resting a lot. Dealing with the drain. Not as bad as I expected cleaning it out, but a pain keeping track of it and keeping it pinned and out of my way. Arm really sore. More later.
Wednesday, December 3, 2008
Round Two
12/3/08
I should be asleep right now since I'm due to get up in a few hours, but I'm still awake. I figure I'll have lots of time to sleep tomorrow. I'm feeling pretty good about the surgery right now. Well, I've had moments of sheer terror and crying at odd times and in odd places. But, overall I believe that it will go better. Its so early in the morning that I won't have all day long to get anxious. And, last time I started the day off getting a wire inserted into my boob and driving across town right afterwards. By the time I arrived at the hospital, I was in pain, stressed, cold, thirsty and hungry. And, I had to go through yet another needle in my breast for the sentinel node thing. This time I will go straight in, get prepped, and go into surgery- drugged up and happy this time! I'm practicing my positive visualization right now: I am getting the BEST recovery nurse and when I wake up I am going to feel safe and well. I am getting the BEST IV giving nurse and my veins are plump and hydrated (they really are- I've been drinking a LOT of water today). My surgeon does his BEST work first thing in the morning. My body is strong and healthy and will recover well.
Today I had the bone scan. I went in first for a shot of radioactive stuff. It was injected into an IV. I started getting panicky when the nurse was getting ready for the IV. Then I remembered and I took a few minutes to visualize my great, easy veins. I felt a little prick, then nothing. I thought she was numbing me up with something first, but when I asked, she said she was done! The IV went in so easily, just as I had visualized. It was really, really cool. I didn't feel any different at all with the radioactive stuff binding to my bones. I left and went to the mall for a pedicure. That was heavenly! A whole hour of a foot and leg massage, and beautiful nails at the end! Then, I returned to the hospital and explored the lobby and had lunch before the scan. It is a beautiful hospital. I felt a little bit like I was at a luxury resort somewhere. My lunch was cheap and delicious, and I had a view of the river and of some walking paths. I looked around and saw many, many employees of the hospital and I realized that this is really an ok place to be. This is just a place with a bunch of people in the helping profession all working to get people well. It really helped me today to see this side of the hospital, instead of just the little surgery area. I'm kind of looking forward to staying the night there. Yes, I realize that once I'm there it won't really be a luxury resort, but right now I can kind of imagine it that way.
The bone scan was fine. Two painfully young men were my techs (why are these people so young? Or am I getting old?!) My sponsor was with me and I was so grateful to have her calm presence there. I laid down on a very narrow table and a big camera (huge) very slowly moved across my body. It was a little weird having it so close to my face, but not bad. The two techs were at the computer talking about something, and my sponsor and I talked about how in awe of the machine we were. I had a moment of gratitude for the brilliance of the human mind to create machines such as these. Earlier in the day I had a huge amount of gratitude for all the women who came before me in the early days and doctors learned from them what treatment options would and wouldn't work. I am so very grateful for the amount of research and work that has gone into fighting cancer. I felt a little like there is a huge amount of power in so many people working towards one goal- treating cancer.
The mind/body class last night was so great for me. I am so happy that my friend K went with me. I don't think I could have walked in there alone. I had so much fear and anxiety about joining the "cancer club". But, I felt ok in the group and it was even ok meeting other people who have cancer. I'm still not really ok that I'm one of them, but I am happy to be in such nice company. The big thing I learned is how to breath deeply and how to use more of my lung capacity in order to reduce stress. I've been trying it today and it is very calming. Mrs. T (the instructor and Dr. T's wife) is a great teacher and I think I will learn a lot from her.
The girls are all taken care of. We had a nice evening today, Kaycee has decided that she wants to play on a basketball team, like Karina. So, we went shoe and ball shopping and Kaycee got her first pair of basketball shoes and a pink basketball. For those of you who know Kaycee, this is a HUGE deal. I'm hoping playing a sport will be good for her. And, the girls have been getting along so well- its been very nice and peaceful.
Not sure when I'll write next- I'm going on a mini vacation to a great luxury resort......
I should be asleep right now since I'm due to get up in a few hours, but I'm still awake. I figure I'll have lots of time to sleep tomorrow. I'm feeling pretty good about the surgery right now. Well, I've had moments of sheer terror and crying at odd times and in odd places. But, overall I believe that it will go better. Its so early in the morning that I won't have all day long to get anxious. And, last time I started the day off getting a wire inserted into my boob and driving across town right afterwards. By the time I arrived at the hospital, I was in pain, stressed, cold, thirsty and hungry. And, I had to go through yet another needle in my breast for the sentinel node thing. This time I will go straight in, get prepped, and go into surgery- drugged up and happy this time! I'm practicing my positive visualization right now: I am getting the BEST recovery nurse and when I wake up I am going to feel safe and well. I am getting the BEST IV giving nurse and my veins are plump and hydrated (they really are- I've been drinking a LOT of water today). My surgeon does his BEST work first thing in the morning. My body is strong and healthy and will recover well.
Today I had the bone scan. I went in first for a shot of radioactive stuff. It was injected into an IV. I started getting panicky when the nurse was getting ready for the IV. Then I remembered and I took a few minutes to visualize my great, easy veins. I felt a little prick, then nothing. I thought she was numbing me up with something first, but when I asked, she said she was done! The IV went in so easily, just as I had visualized. It was really, really cool. I didn't feel any different at all with the radioactive stuff binding to my bones. I left and went to the mall for a pedicure. That was heavenly! A whole hour of a foot and leg massage, and beautiful nails at the end! Then, I returned to the hospital and explored the lobby and had lunch before the scan. It is a beautiful hospital. I felt a little bit like I was at a luxury resort somewhere. My lunch was cheap and delicious, and I had a view of the river and of some walking paths. I looked around and saw many, many employees of the hospital and I realized that this is really an ok place to be. This is just a place with a bunch of people in the helping profession all working to get people well. It really helped me today to see this side of the hospital, instead of just the little surgery area. I'm kind of looking forward to staying the night there. Yes, I realize that once I'm there it won't really be a luxury resort, but right now I can kind of imagine it that way.
The bone scan was fine. Two painfully young men were my techs (why are these people so young? Or am I getting old?!) My sponsor was with me and I was so grateful to have her calm presence there. I laid down on a very narrow table and a big camera (huge) very slowly moved across my body. It was a little weird having it so close to my face, but not bad. The two techs were at the computer talking about something, and my sponsor and I talked about how in awe of the machine we were. I had a moment of gratitude for the brilliance of the human mind to create machines such as these. Earlier in the day I had a huge amount of gratitude for all the women who came before me in the early days and doctors learned from them what treatment options would and wouldn't work. I am so very grateful for the amount of research and work that has gone into fighting cancer. I felt a little like there is a huge amount of power in so many people working towards one goal- treating cancer.
The mind/body class last night was so great for me. I am so happy that my friend K went with me. I don't think I could have walked in there alone. I had so much fear and anxiety about joining the "cancer club". But, I felt ok in the group and it was even ok meeting other people who have cancer. I'm still not really ok that I'm one of them, but I am happy to be in such nice company. The big thing I learned is how to breath deeply and how to use more of my lung capacity in order to reduce stress. I've been trying it today and it is very calming. Mrs. T (the instructor and Dr. T's wife) is a great teacher and I think I will learn a lot from her.
The girls are all taken care of. We had a nice evening today, Kaycee has decided that she wants to play on a basketball team, like Karina. So, we went shoe and ball shopping and Kaycee got her first pair of basketball shoes and a pink basketball. For those of you who know Kaycee, this is a HUGE deal. I'm hoping playing a sport will be good for her. And, the girls have been getting along so well- its been very nice and peaceful.
Not sure when I'll write next- I'm going on a mini vacation to a great luxury resort......
Monday, December 1, 2008
Strip Malls and Starbucks
12/1/08
Today was my first day back at work. It felt weird at first. But, then it felt good to be back to a somewhat normal feeling day. Until I went in for my CT scan. (I thought it was a cat scan and I kept having images of my kitties). It was located in a strip mall in between a Starbucks and a Wok restaurant. It looked like one of those strip mall offices where you go to sign up for a temp job. The waiting area was cold and had these high, modern ceilings like you might see in a night club. The receptionist took down my information and said, "Your portion will be $250.00. Would you like to make a payment on that now?" Like I was buying a car or something. She gave me a barium drink in a medical looking bottle with a cheerful label that said "Berry Flavored Barium Smoothy!" I sat facing the outdoor tables of Starbucks and pretended that I was having a Starbucks drink and sitting with friends, without a care in the world. I tried not to be envious of the people I saw going in and out, a part of the every day world. It worked for the first half, then the drink started tasting gross- I needed to have an empty stomach for the scan, and the smoothy was giving me the grossed out shudders. A motorcycle guy walked in and was giving me the flirty eye. I had to laugh to think I might be hit on in such a place, feeling as I was feeling. Very surreal.
After almost an hour I was called back and I was happy to learn that I didn't have to take my clothes off! The table looked a lot like the MRI table, except that I got to lay on my back with a very nice pillow for my head and for my legs. The tech was a painfully young girl who was friendly, but way too young. I hadn't been expecting an IV, but she told me I needed iodine in me to help with the pictures. After the failed attempts at IV's for my surgery, I was not too happy to hear that. I told her about that experience and offered her my right arm, which typically has the best vein and was not the one used for surgery. She did a bunch of jabbing and tried to feed a catheter in- ouch! No success. Then, I remembered that I'm supposed to be practicing what I learned from watching "The Secret". I am supposed to be doing positive affirmations- not just saying "I hope the IV goes in", but saying "I have great veins and I'm thankful that the IV will go in with no problem." So, I told her that I had made a mistake and that I actually had a great vein on the left arm that would be really easy. I sent a silent prayer of thanks for my great vein and I visualized the needle and catheter going in easily. It worked!! She was so surprised, so I let her in on my secret.
The scan was simple- in and out of the machine several times for a few minutes each. The iodine was warm in my body and reminded me of being buried in warm sand as a child at the beach. The room was very cold and I was feeling resentful of all those people happily chatting and sipping warm drinks next door. Then it occurred to me- I could actually go to Starbucks and be one of those people! I got finished and got my stuff together and was almost out the door when the youngster called out to me and said she needed to take a few more pictures. Back in I went and again it was pretty quick. The machine was funny- it made a sound like an airplane makes when it is revving up its engines getting ready for take off. A computer voice would come on and tell me when to hold my breath and when to breathe normally. I was able to close my eyes and imagine that I was an astronaut in the space shuttle, ready for take off. It was actually kind of fun for small bits of time.
Once I FINALLY left, I stopped by Starbucks and got a yummy peppermint coffee and a pastry breakfast thing. I so thoroughly enjoyed it, and I got to pretend to be a regular person participating in the regular world for a bit. The results of the scan go to my doctor tomorrow and I'm wondering again if I should call him.
I ended the day with Kaycee's last vision therapy check. She has made HUGE improvements and I am so glad that I stuck it out with that and that we finished when we did. Got home pretty late and was EXHAUSTED. Kaycee is bugging me for a walk right now, so soon I'll put on my cool motivating shoes and head out. I took off the last of the steri-strips and my scar is pretty cool looking, as is the purple bruising.
Today was my first day back at work. It felt weird at first. But, then it felt good to be back to a somewhat normal feeling day. Until I went in for my CT scan. (I thought it was a cat scan and I kept having images of my kitties). It was located in a strip mall in between a Starbucks and a Wok restaurant. It looked like one of those strip mall offices where you go to sign up for a temp job. The waiting area was cold and had these high, modern ceilings like you might see in a night club. The receptionist took down my information and said, "Your portion will be $250.00. Would you like to make a payment on that now?" Like I was buying a car or something. She gave me a barium drink in a medical looking bottle with a cheerful label that said "Berry Flavored Barium Smoothy!" I sat facing the outdoor tables of Starbucks and pretended that I was having a Starbucks drink and sitting with friends, without a care in the world. I tried not to be envious of the people I saw going in and out, a part of the every day world. It worked for the first half, then the drink started tasting gross- I needed to have an empty stomach for the scan, and the smoothy was giving me the grossed out shudders. A motorcycle guy walked in and was giving me the flirty eye. I had to laugh to think I might be hit on in such a place, feeling as I was feeling. Very surreal.
After almost an hour I was called back and I was happy to learn that I didn't have to take my clothes off! The table looked a lot like the MRI table, except that I got to lay on my back with a very nice pillow for my head and for my legs. The tech was a painfully young girl who was friendly, but way too young. I hadn't been expecting an IV, but she told me I needed iodine in me to help with the pictures. After the failed attempts at IV's for my surgery, I was not too happy to hear that. I told her about that experience and offered her my right arm, which typically has the best vein and was not the one used for surgery. She did a bunch of jabbing and tried to feed a catheter in- ouch! No success. Then, I remembered that I'm supposed to be practicing what I learned from watching "The Secret". I am supposed to be doing positive affirmations- not just saying "I hope the IV goes in", but saying "I have great veins and I'm thankful that the IV will go in with no problem." So, I told her that I had made a mistake and that I actually had a great vein on the left arm that would be really easy. I sent a silent prayer of thanks for my great vein and I visualized the needle and catheter going in easily. It worked!! She was so surprised, so I let her in on my secret.
The scan was simple- in and out of the machine several times for a few minutes each. The iodine was warm in my body and reminded me of being buried in warm sand as a child at the beach. The room was very cold and I was feeling resentful of all those people happily chatting and sipping warm drinks next door. Then it occurred to me- I could actually go to Starbucks and be one of those people! I got finished and got my stuff together and was almost out the door when the youngster called out to me and said she needed to take a few more pictures. Back in I went and again it was pretty quick. The machine was funny- it made a sound like an airplane makes when it is revving up its engines getting ready for take off. A computer voice would come on and tell me when to hold my breath and when to breathe normally. I was able to close my eyes and imagine that I was an astronaut in the space shuttle, ready for take off. It was actually kind of fun for small bits of time.
Once I FINALLY left, I stopped by Starbucks and got a yummy peppermint coffee and a pastry breakfast thing. I so thoroughly enjoyed it, and I got to pretend to be a regular person participating in the regular world for a bit. The results of the scan go to my doctor tomorrow and I'm wondering again if I should call him.
I ended the day with Kaycee's last vision therapy check. She has made HUGE improvements and I am so glad that I stuck it out with that and that we finished when we did. Got home pretty late and was EXHAUSTED. Kaycee is bugging me for a walk right now, so soon I'll put on my cool motivating shoes and head out. I took off the last of the steri-strips and my scar is pretty cool looking, as is the purple bruising.
Sunday, November 30, 2008
Acceptance
11/30/08
I made it through the weekend with many ups and downs. I figured Wednesday would be hard, but that I'd bounce back in time for Thanksgiving on Thursday. It didn't happen. I woke up still feeling down, and Kaycee had a huge melt-down, so we didn't make it to our Thanksgiving day event. Which turned out ok, because I spent some time relaxing with Karina and watching the documentary, "The Secret". I had some huge grief time alone in my bathroom, then got up and the girls and I went for a very long, fun walk. We all felt much better afterwards. The rest of the weekend I spent shopping a bit- I got some nice, inspirational pictures for my bathroom since that seems to be the place I go when I don't want the girls to see the full extent of my emotions. It now has a nice calming feel to it, just like my bedroom. I was feeling great on Friday, so I went roller blading for half and hour. The weather was amazingly beautiful and I went along the river and had a nice, peaceful time. I was sore and tired afterwards, but felt great for having gone. Yesterday I was feeling some pain in my breast, but had arranged to practice soccer with F. (awesome, sweet boyfriend), so I wrapped it up tight and went. I was feeling so good that I was considering playing a game the next day. I went for a little jog around the track to see how running felt, and I didn't make it too far. My breast really started aching with the extra motion. I finished up practice and got home exhausted and had a bit of a nap. Today I was very tired, so I went to a movie with Karina and friends had a nice little nap in the theater. I had told the girls that I wanted to try to walk every evening, and Kaycee is super excited about this. She bugged me and bugged me to go tonight after dinner, and although I didn't want to, I did. It was fun and refreshing. I asked her to bug me about it other nights, and I am hoping that she will help keep me motivated to walk.
I did some reading and some talking to people and I'm at a place of acceptance today. The port-a-cath (?) is not how I pictured it. I imagined a plastic thing sticking out of my chest with a cork in it blocking off my heart vein. It is actually implanted beneath the surface of my skin. Each time the chemo is injected, the skin gets numbed up and a needle is inserted. It was explained to me that the chemo going into this big vein is like being dumped into a river, as opposed to going into my arm veins, which are like streams. My mom said that the people she saw having it done this way seemed to have an easier time of it and that she thought my doctor was trying to make things easier for me. Ok, I can have some gratitude around this.
Dr. T suggested that I stay the night in the hospital, and I was resistant because the little room I was in before sucked and the bed was hard and uncomfortable. But, a friend of mine who had a recent hospital stay said the actual over night room is beautiful and the bed is comfortable and it would be nice for me to be taken care of for that first night. So, I am considering the option and plan to pack my own pillow just in case I stay.
My mom also told me that she imagined chemo being like a powerful monster that was eating away at the cancer. I like the idea of flipping the image of poison to one of it being a powerful weapon. I have confidence in my body to bounce back from the chemo. I am in great health and I know there will be bad times, but I am picturing myself returning to my healthy, active self once the chemo is over. And, going on walks through the neighborhood with the girls is something that I wouldn't normally do, but I will do more of. It is a great opportunity to slow down and see what is right around me and bond with the girls.
I know my arm may be messed up after the lymph nodes come out. I am wondering how that will affect kayaking next summer. But, mostly I am so grateful that soccer is played with the feet! And, I'm confident that physical therapy will help me.
I learned to knit this weekend!! It is so cool and hopefully will give me something to do when I'm resting.
I've got some fears about the actual surgery and of waking up in pain afterwards. But, I've got a few days to work on this. And, my first mind/body class is this Tuesday, so maybe I'll learn something there to help.
I've told a few more people this weekend- some parents of the girls' friends. It is hard to tell people, but it feels much better when people know. I've got some play dates lined up for them for the week after surgery. I don't think its as scary for them now. I've explained that it will be a lot like last time- I'll need lots of rest for a week or so, then I'll bounce back. I've got family coming for a chunk of time over Christmas, so I feel like the girls will be well cared for. I had a bad dream a few nights ago where I was leaving them to move to Germany, and my flight was leaving in half and hour, and I hadn't made any arrangements for them to stay with anyone. I was frantically making phone calls as I was packing, and they couldn't understand why they weren't going with me. I couldn't understand it either and it was breaking my heart to leave them. I woke up from that dream knowing it was about the cancer. One of my biggest fears is that I will have forgotten to have made arrangements for them to get picked up one day, and they'll be left stranded at school. Or, I'll have a complication and have to stay longer in the hospital and I won't have made arrangements for them. Today I got organized and got a new schedule book and I have written in there which kid is going with who on which days. I can easily see where I still need help and where they will be when. I should be able to sleep easier this time. And, I know that I've got many, many people who I could call if I really did drop the ball and forget to get them.
I googled CT scan and it seems ok. Drink some stuff- dye maybe? and lie really still while a big machine takes pictures. I've done this before and while its not fun, I have had some pretty cool meditation experiences.
I CAN DO THIS
I made it through the weekend with many ups and downs. I figured Wednesday would be hard, but that I'd bounce back in time for Thanksgiving on Thursday. It didn't happen. I woke up still feeling down, and Kaycee had a huge melt-down, so we didn't make it to our Thanksgiving day event. Which turned out ok, because I spent some time relaxing with Karina and watching the documentary, "The Secret". I had some huge grief time alone in my bathroom, then got up and the girls and I went for a very long, fun walk. We all felt much better afterwards. The rest of the weekend I spent shopping a bit- I got some nice, inspirational pictures for my bathroom since that seems to be the place I go when I don't want the girls to see the full extent of my emotions. It now has a nice calming feel to it, just like my bedroom. I was feeling great on Friday, so I went roller blading for half and hour. The weather was amazingly beautiful and I went along the river and had a nice, peaceful time. I was sore and tired afterwards, but felt great for having gone. Yesterday I was feeling some pain in my breast, but had arranged to practice soccer with F. (awesome, sweet boyfriend), so I wrapped it up tight and went. I was feeling so good that I was considering playing a game the next day. I went for a little jog around the track to see how running felt, and I didn't make it too far. My breast really started aching with the extra motion. I finished up practice and got home exhausted and had a bit of a nap. Today I was very tired, so I went to a movie with Karina and friends had a nice little nap in the theater. I had told the girls that I wanted to try to walk every evening, and Kaycee is super excited about this. She bugged me and bugged me to go tonight after dinner, and although I didn't want to, I did. It was fun and refreshing. I asked her to bug me about it other nights, and I am hoping that she will help keep me motivated to walk.
I did some reading and some talking to people and I'm at a place of acceptance today. The port-a-cath (?) is not how I pictured it. I imagined a plastic thing sticking out of my chest with a cork in it blocking off my heart vein. It is actually implanted beneath the surface of my skin. Each time the chemo is injected, the skin gets numbed up and a needle is inserted. It was explained to me that the chemo going into this big vein is like being dumped into a river, as opposed to going into my arm veins, which are like streams. My mom said that the people she saw having it done this way seemed to have an easier time of it and that she thought my doctor was trying to make things easier for me. Ok, I can have some gratitude around this.
Dr. T suggested that I stay the night in the hospital, and I was resistant because the little room I was in before sucked and the bed was hard and uncomfortable. But, a friend of mine who had a recent hospital stay said the actual over night room is beautiful and the bed is comfortable and it would be nice for me to be taken care of for that first night. So, I am considering the option and plan to pack my own pillow just in case I stay.
My mom also told me that she imagined chemo being like a powerful monster that was eating away at the cancer. I like the idea of flipping the image of poison to one of it being a powerful weapon. I have confidence in my body to bounce back from the chemo. I am in great health and I know there will be bad times, but I am picturing myself returning to my healthy, active self once the chemo is over. And, going on walks through the neighborhood with the girls is something that I wouldn't normally do, but I will do more of. It is a great opportunity to slow down and see what is right around me and bond with the girls.
I know my arm may be messed up after the lymph nodes come out. I am wondering how that will affect kayaking next summer. But, mostly I am so grateful that soccer is played with the feet! And, I'm confident that physical therapy will help me.
I learned to knit this weekend!! It is so cool and hopefully will give me something to do when I'm resting.
I've got some fears about the actual surgery and of waking up in pain afterwards. But, I've got a few days to work on this. And, my first mind/body class is this Tuesday, so maybe I'll learn something there to help.
I've told a few more people this weekend- some parents of the girls' friends. It is hard to tell people, but it feels much better when people know. I've got some play dates lined up for them for the week after surgery. I don't think its as scary for them now. I've explained that it will be a lot like last time- I'll need lots of rest for a week or so, then I'll bounce back. I've got family coming for a chunk of time over Christmas, so I feel like the girls will be well cared for. I had a bad dream a few nights ago where I was leaving them to move to Germany, and my flight was leaving in half and hour, and I hadn't made any arrangements for them to stay with anyone. I was frantically making phone calls as I was packing, and they couldn't understand why they weren't going with me. I couldn't understand it either and it was breaking my heart to leave them. I woke up from that dream knowing it was about the cancer. One of my biggest fears is that I will have forgotten to have made arrangements for them to get picked up one day, and they'll be left stranded at school. Or, I'll have a complication and have to stay longer in the hospital and I won't have made arrangements for them. Today I got organized and got a new schedule book and I have written in there which kid is going with who on which days. I can easily see where I still need help and where they will be when. I should be able to sleep easier this time. And, I know that I've got many, many people who I could call if I really did drop the ball and forget to get them.
I googled CT scan and it seems ok. Drink some stuff- dye maybe? and lie really still while a big machine takes pictures. I've done this before and while its not fun, I have had some pretty cool meditation experiences.
I CAN DO THIS
Thursday, November 27, 2008
Thanksgiving
11/27/08
9 years ago today I took a pregnancy test and discovered I was pregnant (with Kaycee). It was one of the happiest discoveries of my life and the very best Thanksgiving day of my life.
Today is a different day. My discovery this year was the absolute worst discovery of my life. And, I'm determined to be grateful today anyway. I am thinking of many years ago- 18 or so, when I went off to the Gulf War for 9 months. I was so terrified when I learned that I'd be deployed. It was about a week from learning the news to actually leaving, with lots of false alarms as to when we'd leave. Finally, I was in Walmart shopping for a pocket knife when a call for me came over the intercom saying to report immediately back to base. We left a few hours later. The plane ride over was so surreal and I was so terrified. Everything about those first few weeks was scary and different and unreal. 9 months later it was all over and I came back to the world. I had the odd sensation that the world had gone on as normal and hadn't missed me at all. I had missed out on a huge chunk of the normal world and I had a hard time jumping back in as if all was normal. I was forever changed. I had fought a war, been afraid for my life, and returned looking just the same on the outside. I'm feeling all of these same feelings today. I got the call that I will be going to war with cancer. I had the first little battle and discovered that this is going to be a longer war than I thought- about 9 months or so. The next battle is coming up and the dread is awful. I was afraid I might die in that first war, and I remember writing a goodbye letter to my mom. I am a bit afraid of the same thing in this war, but I refuse to write a goodbye letter. When I was in the middle of that first 9 months, and even for a time right after, I couldn't imagine a time when it would be behind me. I thought about it every day. Now, I realize that although it did have a profound effect on me, and it did change me, it is very much in the past and it is something I don't think about too often. The cancer war will be like this for me one day too. Yesterday I was scared and pissed off. Today I feel ready for battle. And I'm still pissed. And hopeful. I'm not a naive 21 year old. This time I'm wiser and I know a little bit about battles. I know what my weapons against cancer are: acceptance, surrender, peace, love, nurturing, friends, family, doctors, nurses, poison/medicine, scalpels, meditation, herbs, crystals, mind/body work, wise women, healing women, and, most of all, the big nuclear bomb in my arsenal- my spiritual connection to my higher power. I have some great words from Alanon that I keep repeating: I don't have to like my situation, but I want to like myself in my situation. And, of course, the serenity prayer: God, grant me the serenity to accept the things I cannot change (cancer), the courage to change the things I can (my attitude) and the wisdom to know the difference.
9 years ago today I took a pregnancy test and discovered I was pregnant (with Kaycee). It was one of the happiest discoveries of my life and the very best Thanksgiving day of my life.
Today is a different day. My discovery this year was the absolute worst discovery of my life. And, I'm determined to be grateful today anyway. I am thinking of many years ago- 18 or so, when I went off to the Gulf War for 9 months. I was so terrified when I learned that I'd be deployed. It was about a week from learning the news to actually leaving, with lots of false alarms as to when we'd leave. Finally, I was in Walmart shopping for a pocket knife when a call for me came over the intercom saying to report immediately back to base. We left a few hours later. The plane ride over was so surreal and I was so terrified. Everything about those first few weeks was scary and different and unreal. 9 months later it was all over and I came back to the world. I had the odd sensation that the world had gone on as normal and hadn't missed me at all. I had missed out on a huge chunk of the normal world and I had a hard time jumping back in as if all was normal. I was forever changed. I had fought a war, been afraid for my life, and returned looking just the same on the outside. I'm feeling all of these same feelings today. I got the call that I will be going to war with cancer. I had the first little battle and discovered that this is going to be a longer war than I thought- about 9 months or so. The next battle is coming up and the dread is awful. I was afraid I might die in that first war, and I remember writing a goodbye letter to my mom. I am a bit afraid of the same thing in this war, but I refuse to write a goodbye letter. When I was in the middle of that first 9 months, and even for a time right after, I couldn't imagine a time when it would be behind me. I thought about it every day. Now, I realize that although it did have a profound effect on me, and it did change me, it is very much in the past and it is something I don't think about too often. The cancer war will be like this for me one day too. Yesterday I was scared and pissed off. Today I feel ready for battle. And I'm still pissed. And hopeful. I'm not a naive 21 year old. This time I'm wiser and I know a little bit about battles. I know what my weapons against cancer are: acceptance, surrender, peace, love, nurturing, friends, family, doctors, nurses, poison/medicine, scalpels, meditation, herbs, crystals, mind/body work, wise women, healing women, and, most of all, the big nuclear bomb in my arsenal- my spiritual connection to my higher power. I have some great words from Alanon that I keep repeating: I don't have to like my situation, but I want to like myself in my situation. And, of course, the serenity prayer: God, grant me the serenity to accept the things I cannot change (cancer), the courage to change the things I can (my attitude) and the wisdom to know the difference.
Wednesday, November 26, 2008
A Hard Day
November 26, 2008
I'm not sure if I can write my feelings just yet, but I'll start with the facts. I learned today that the cancer was only in the original lump, not in the outer satellite spots. Dr. T explained that when those two spots had a biopsy, probably the needle actually went back into the original lump by mistake. I thought this was great news at first, but it actually doesn't really matter. He still did not get a great margin on the chunk that he took- 1 mm and he likes 5 mm to be safe. I was hopeful that the lymph nodes would have been spared, but he went on to say that there was cancer "all over" the one node he took out.
Next Steps for me are:
1. Go in next Monday for a CAT scan (not sure if this is spelled right or what it stands for or really what it even is) to look for cancer in other parts of my body. All I know is that this involves not eating ahead of time and drinking something and then getting scanned.
2. Go in next Wednesday morning to be injected with dye- the same place where I was injected before. Leave, then come back in the afternoon for a bone scan. Again, looking for cancer in other areas of my body.
3. Go in 6:00 Thursday morning for my 7:30 surgery, number two, to remove all my lymph nodes under my right arm. Have another lumpectomy to get a better margin. Have a drain installed to catch the gunk for a few weeks after the surgery. Have a port? something like that, installed into the vein on my left side that leads to my heart (did I really hear that right? A tube in my heart vein?). This thing will be in place for 6 months and will be the port of entry for chemotherapy. Dr. T explained that its better for chemo to go into this big vein as it won't be as hard on my veins. He says that having an IV each time would be hard because chemo destroys small veins. I need to do some looking into this. I DO NOT want some thing stuck in my heart for 6 months- I just pictured a vampire putting a stake through my heart and leaving it there, then injecting poison into it. ARRGHH I wish my mind wouldn't conjure up such images!
4. As soon as the drain comes out (this is a little plastic thing that reminds me of a hallow hand grenade. It sound really gross. It fills up with blood and gunk and I have to unhook it and empty it and wear it attached to me) I begin chemotherapy. The sooner the better according to Dr. T. I looked at the calendar and it should be Christmas week. Chemo for Christmas this year. Probably the most hated and loved present ever. I HATE THIS. And of course I'm extremely grateful for treatment, even if it is poison.
5. After 6 months, I start 6 weeks of daily radiation on my breast. Depending on the extent of cancer in my lymph nodes, maybe on that area too.
6. Some point after chemo, something happens with my ovaries and estrogen. Dr. T didn't want to talk to me about that yet.
I'm really, really , really PISSED OFF today. I'm ok with this. I haven't felt much anger yet, and I guess its time. I'll go back to my calm, peaceful self another time. Right now I'm ANGRY.
I'm not sure if I can write my feelings just yet, but I'll start with the facts. I learned today that the cancer was only in the original lump, not in the outer satellite spots. Dr. T explained that when those two spots had a biopsy, probably the needle actually went back into the original lump by mistake. I thought this was great news at first, but it actually doesn't really matter. He still did not get a great margin on the chunk that he took- 1 mm and he likes 5 mm to be safe. I was hopeful that the lymph nodes would have been spared, but he went on to say that there was cancer "all over" the one node he took out.
Next Steps for me are:
1. Go in next Monday for a CAT scan (not sure if this is spelled right or what it stands for or really what it even is) to look for cancer in other parts of my body. All I know is that this involves not eating ahead of time and drinking something and then getting scanned.
2. Go in next Wednesday morning to be injected with dye- the same place where I was injected before. Leave, then come back in the afternoon for a bone scan. Again, looking for cancer in other areas of my body.
3. Go in 6:00 Thursday morning for my 7:30 surgery, number two, to remove all my lymph nodes under my right arm. Have another lumpectomy to get a better margin. Have a drain installed to catch the gunk for a few weeks after the surgery. Have a port? something like that, installed into the vein on my left side that leads to my heart (did I really hear that right? A tube in my heart vein?). This thing will be in place for 6 months and will be the port of entry for chemotherapy. Dr. T explained that its better for chemo to go into this big vein as it won't be as hard on my veins. He says that having an IV each time would be hard because chemo destroys small veins. I need to do some looking into this. I DO NOT want some thing stuck in my heart for 6 months- I just pictured a vampire putting a stake through my heart and leaving it there, then injecting poison into it. ARRGHH I wish my mind wouldn't conjure up such images!
4. As soon as the drain comes out (this is a little plastic thing that reminds me of a hallow hand grenade. It sound really gross. It fills up with blood and gunk and I have to unhook it and empty it and wear it attached to me) I begin chemotherapy. The sooner the better according to Dr. T. I looked at the calendar and it should be Christmas week. Chemo for Christmas this year. Probably the most hated and loved present ever. I HATE THIS. And of course I'm extremely grateful for treatment, even if it is poison.
5. After 6 months, I start 6 weeks of daily radiation on my breast. Depending on the extent of cancer in my lymph nodes, maybe on that area too.
6. Some point after chemo, something happens with my ovaries and estrogen. Dr. T didn't want to talk to me about that yet.
I'm really, really , really PISSED OFF today. I'm ok with this. I haven't felt much anger yet, and I guess its time. I'll go back to my calm, peaceful self another time. Right now I'm ANGRY.
Tuesday, November 25, 2008
Still Waiting
Tuesday Evening, Nov 25, 2008
Still no idea what the doc will say tomorrow. I had a great, normal kind of a day today. Got to visit with some friends and I got out of the house for a very nice walk through the woods. Not too sore right now, just very sleepy. I finally read a little bit more about all the different scenarios and treatment options. So many of the drugs used to treat cancer have awful side effects. I read today that some women who get chemotherapy later on develop leukemia. What a dirty trick- the drugs that can fight one type of cancer can also cause another type of cancer?
I am hopeful though. I feel really, really healthy and like I'm in good shape. It has been a week today since my surgery and compared to how I felt the first days after, right now I feel about 80% normal physically.
The piece that I wasn't able to write about last week was this: I have the type of cancer that grows better in the presence of estrogen. In order to stop that, I will need to stop producing estrogen. It sounds like there are two choices- take a drug that stops it, and has some possible wicked side effects (like cancer of the uterus), or have my ovaries removed. I hate both choices, and I'm not even sure if I get to make the choice or if the type of cancer chooses for me. I have been all done having children for awhile now, but I still didn't plan on going into such early menopause. When I got this news last week, it was almost more upsetting than the news that I have cancer. I'm not sure exactly why yet- something to do with my view of myself as a woman. Also, the thought of yet another surgery on yet another part of my body doesn't thrill me.
I think I have come to believe that the hardest part of the last surgery was recovering from all the drugs and anesthesia, rather than the actual surgery. Maybe it'll be easier and I'll be more desensitized the next time.
I've got my plan in place for tomorrow- I'm bringing my friend to write notes and be a moral support and my boyfriend to put his arms around me and comfort me. I've got time set aside after the appointment to either hide in bed and cry for an hour, or go out for lunch and celebrate.
Still no idea what the doc will say tomorrow. I had a great, normal kind of a day today. Got to visit with some friends and I got out of the house for a very nice walk through the woods. Not too sore right now, just very sleepy. I finally read a little bit more about all the different scenarios and treatment options. So many of the drugs used to treat cancer have awful side effects. I read today that some women who get chemotherapy later on develop leukemia. What a dirty trick- the drugs that can fight one type of cancer can also cause another type of cancer?
I am hopeful though. I feel really, really healthy and like I'm in good shape. It has been a week today since my surgery and compared to how I felt the first days after, right now I feel about 80% normal physically.
The piece that I wasn't able to write about last week was this: I have the type of cancer that grows better in the presence of estrogen. In order to stop that, I will need to stop producing estrogen. It sounds like there are two choices- take a drug that stops it, and has some possible wicked side effects (like cancer of the uterus), or have my ovaries removed. I hate both choices, and I'm not even sure if I get to make the choice or if the type of cancer chooses for me. I have been all done having children for awhile now, but I still didn't plan on going into such early menopause. When I got this news last week, it was almost more upsetting than the news that I have cancer. I'm not sure exactly why yet- something to do with my view of myself as a woman. Also, the thought of yet another surgery on yet another part of my body doesn't thrill me.
I think I have come to believe that the hardest part of the last surgery was recovering from all the drugs and anesthesia, rather than the actual surgery. Maybe it'll be easier and I'll be more desensitized the next time.
I've got my plan in place for tomorrow- I'm bringing my friend to write notes and be a moral support and my boyfriend to put his arms around me and comfort me. I've got time set aside after the appointment to either hide in bed and cry for an hour, or go out for lunch and celebrate.
Waiting
11/25/08
Still waiting. I called the doctor's office yesterday to see if any results were back yet and left a message. No word yet. Called the VA again and left a message. No word yet. Kaycee was home sick with me yesterday, so I had an opportunity to rest and mommy her. It was not so bad having company. I got out for a walk last night when a friend came over. I thought I'd just go for a short one, but it was so beautiful out, very cold and foggy, and I ended up walking for almost an hour. I was very sore and tired when I got back in, but my spirits were great. I was a little sad that my legs were so sore- I wonder how long it will be before I can get back to playing soccer. But, I'm so glad that I seem to be healing so well. I am sleeping a lot still and sleeping very well. I slept in yesterday and today until about 10:00- something I NEVER do. I felt like I could have kept on sleeping, but the phone began ringing.
I have the feeling today that I'm done with the cancer thing and ready to get back to my regular life. I wonder if I just skip the doctor's appointment tomorrow if I could just go back to normal?
I know the answer to this, but its nice to imagine it anyway.
Still waiting. I called the doctor's office yesterday to see if any results were back yet and left a message. No word yet. Called the VA again and left a message. No word yet. Kaycee was home sick with me yesterday, so I had an opportunity to rest and mommy her. It was not so bad having company. I got out for a walk last night when a friend came over. I thought I'd just go for a short one, but it was so beautiful out, very cold and foggy, and I ended up walking for almost an hour. I was very sore and tired when I got back in, but my spirits were great. I was a little sad that my legs were so sore- I wonder how long it will be before I can get back to playing soccer. But, I'm so glad that I seem to be healing so well. I am sleeping a lot still and sleeping very well. I slept in yesterday and today until about 10:00- something I NEVER do. I felt like I could have kept on sleeping, but the phone began ringing.
I have the feeling today that I'm done with the cancer thing and ready to get back to my regular life. I wonder if I just skip the doctor's appointment tomorrow if I could just go back to normal?
I know the answer to this, but its nice to imagine it anyway.
Sunday, November 23, 2008
Sunday Eve
11/23/08
Got through the weekend. Yesterday's euphoria ended during the evening bedtime routine. The girls are impatient for things to be back to normal and ready for me to carry on with taking care of them again. They will be changed, too, from all this. I think they will become strong, independent, and caring, but we have a lot to get through first.
I am so very grateful for the cherished friends who took the girls on outings this weekend. It was challenging having them at home so much, although it was nice too because I've missed them.
Today I went out again, to the grocery store for toilet paper and to Sweet Potato Pie for some comfortable, natural fiber clothing. It was recommended to me to wear more natural clothing that doesn't bind like my jeans do. I found a bunch of stuff to try on, then realized I was exhausted before making it into the dressing room. I got in there and the perky young sales girl kept asking if I needed any help. I got my arm stuck several times and almost considered asking her if she could help dress and undress me, but I'm not quite that ready to ask for help whenever I need it. I did it myself, and ended up feeling like I'd been to lift weights by the time I was finished. I got a few very soft, comfortable things made of hemp, organic cotton, and bamboo. Now I can get dressed during the day, but still feel like I'm in my pajamas!
I left the store thinking that I should go for a walk, but I was so tired, and I was not dressed for the cold. I feel like I've been away from the world for a month- its cold now and Christmas decorations are up and this is not how things were a week ago.
I had a bit of a nap when I got home and I messed around a bit with a large, lavender crystal that was given to me today. Its a beautiful stone and I love how it feels. I tried a little Reiki holding the stone and sort of drifted off and was very, very relaxed. Then the girls came home and we had a much better evening tonight. I've just been leaving the room when they start acting up, and telling them that I will rejoin them once they stop fighting. Tonight we actually got to spend some nice time together playing games, reading, and even finishing up homework. Its 8:00 now and I'm wiped out and ready for bed.
Tomorrow is Monday and I'm anxious. Afraid that the doctor's office will call. Afraid that they won't call. Thinking of calling myself. But not wanting to. Also, I'm in that awkward in between state of not needing to be in bed all day, but not quite ready to jump back into the full swing of things. The retreat/vacation was nice last week, but now I'm ready for something else. Restless I guess. I am going to do a bit of work from home tomorrow. My scars are restless too- sometimes they hurt, sometimes they itch, sometimes they seem to move. There is this cloud over me- I really focused so much on getting through the surgery that I sort of blocked out what is coming next. And, I don't know what's coming next. I really, really wish I was done as the surgery felt like such a bid deal that I should be done. I'm back on the roller coaster, going slowly up, up, up, with no idea if there is a huge drop or a gentle curve over the edge.
Well, at least I know that if I get another Monday call, I won't be driving to get the kids when it comes in!
Got through the weekend. Yesterday's euphoria ended during the evening bedtime routine. The girls are impatient for things to be back to normal and ready for me to carry on with taking care of them again. They will be changed, too, from all this. I think they will become strong, independent, and caring, but we have a lot to get through first.
I am so very grateful for the cherished friends who took the girls on outings this weekend. It was challenging having them at home so much, although it was nice too because I've missed them.
Today I went out again, to the grocery store for toilet paper and to Sweet Potato Pie for some comfortable, natural fiber clothing. It was recommended to me to wear more natural clothing that doesn't bind like my jeans do. I found a bunch of stuff to try on, then realized I was exhausted before making it into the dressing room. I got in there and the perky young sales girl kept asking if I needed any help. I got my arm stuck several times and almost considered asking her if she could help dress and undress me, but I'm not quite that ready to ask for help whenever I need it. I did it myself, and ended up feeling like I'd been to lift weights by the time I was finished. I got a few very soft, comfortable things made of hemp, organic cotton, and bamboo. Now I can get dressed during the day, but still feel like I'm in my pajamas!
I left the store thinking that I should go for a walk, but I was so tired, and I was not dressed for the cold. I feel like I've been away from the world for a month- its cold now and Christmas decorations are up and this is not how things were a week ago.
I had a bit of a nap when I got home and I messed around a bit with a large, lavender crystal that was given to me today. Its a beautiful stone and I love how it feels. I tried a little Reiki holding the stone and sort of drifted off and was very, very relaxed. Then the girls came home and we had a much better evening tonight. I've just been leaving the room when they start acting up, and telling them that I will rejoin them once they stop fighting. Tonight we actually got to spend some nice time together playing games, reading, and even finishing up homework. Its 8:00 now and I'm wiped out and ready for bed.
Tomorrow is Monday and I'm anxious. Afraid that the doctor's office will call. Afraid that they won't call. Thinking of calling myself. But not wanting to. Also, I'm in that awkward in between state of not needing to be in bed all day, but not quite ready to jump back into the full swing of things. The retreat/vacation was nice last week, but now I'm ready for something else. Restless I guess. I am going to do a bit of work from home tomorrow. My scars are restless too- sometimes they hurt, sometimes they itch, sometimes they seem to move. There is this cloud over me- I really focused so much on getting through the surgery that I sort of blocked out what is coming next. And, I don't know what's coming next. I really, really wish I was done as the surgery felt like such a bid deal that I should be done. I'm back on the roller coaster, going slowly up, up, up, with no idea if there is a huge drop or a gentle curve over the edge.
Well, at least I know that if I get another Monday call, I won't be driving to get the kids when it comes in!
Saturday, November 22, 2008
First Walk!
11/22/08
I woke up feeling so good this morning! Just in time, because Kaycee woke up sick. She's been having a tummy ache- I thought maybe as a way to get to spend some time with me, but today she actually puked a bit and was really needing some mommying. I used some of my herbs on her and tucked her into bed with me. I tried some Reiki on her, and she tried some on me- it was very sweet. I was able to get breakfast and unload the dishwasher this morning. I got a shower with no problem. And, I got dressed in real clothes- not pj's today! I was feeling so good, I was toying with the idea of playing a game of soccer tomorrow. Then, the girls left for an outing with some friends, and a friend of mine arrived to take me out for a walk. By the time I got my shoes on, I realized that I was exhausted. But, I went on the walk anyway. Nice and slow and it was SOOOOO good to get outside and walk through my neighborhood. It was a beautiful fall day today and perfect, cool weather. It wasn't a long walk, but I was so tired by the time we finished. I wore a very good sports bra, but the jiggling still caused some soreness. Nothing too unbearable, and well worth it. I don't have bandages over the incisions today- just lots of steri-strips covering the stitches. And lots of red welts from the tape that held the bandages down- I have been plagued by a latex allergy and I must also be allergic to the adhesive in non-latex bandages. I am so happy that I am feeling so much better and can get out. But, I think the soccer game will have to wait. I'm getting ready for a nap right now and I may go for a short drive later.
I can't believe how happy I feel right now. I am sure that I'll get sad again, but for today, I am very peaceful and happy. I have been sleeping so well at night, and I haven't been needing to take a sleeping pill like usual. I was thinking about why that is, and I believe its not only because I'm so tired, but also because all the normal daily stressors are absent for me for right now- I'm not working, not having to get the girls ready for school, not having to pick them up, not having to struggle with them during homework, not having to cook, clean, do laundry, or even change my sheets. Aside from the stress of having cancer, this is like a very relaxing, luxury vacation. This is a very weird thought I know. But, I am getting it that the reason why its so important to have people take care of me is that it frees up all sorts of mental and emotional space inside of me to just concentrate on healing. I realize that I am so very lucky to have so many people helping to carry me through this time.
I thought about calling the doctor's office to see if any of the pathology reports were back. I did finally call yesterday, but they were already closed. Of course I want to know, but a huge part of me also recognizes that if I do know right now, and its bad, that could take away from my healing. And, if I'm to have another operation right away, I really need to be recovered as much as possible from this one first. I really think I'm just supposed to be waiting and relaxing and healing right now. Wednesday will come soon enough.
I tried again to access the VA health system yesterday to see if any of my bills could be covered by them. I had a stomach ache most of yesterday, and as soon as I called the VA number, i could feel my stomach clench up. Its always so frustrating trying to get through to a real human being to ask questions. There is an answering machine with a bunch of different choices, but all the choices either led me right back to the original message, or to a phone that just rang and rang. I finally got through to a real person and found out that there is a whole separate section in the VA health system devoted to women veterans' health issues, and that breast cancer falls under a special women's health issue. The person I wanted to talk to can't be reached by phone, so I left a message with person number one on the phone. Who knows if I'll get a call back, but we'll see. I will be fine without the VA's help because I've got great medical insurance (another huge reason to be grateful), but I want to at least find out if they can cover some of this. I figured that if I'm laying in bed anyway, I may as well make some phone calls. But, the stress may not have been worth it. We'll see.
I woke up feeling so good this morning! Just in time, because Kaycee woke up sick. She's been having a tummy ache- I thought maybe as a way to get to spend some time with me, but today she actually puked a bit and was really needing some mommying. I used some of my herbs on her and tucked her into bed with me. I tried some Reiki on her, and she tried some on me- it was very sweet. I was able to get breakfast and unload the dishwasher this morning. I got a shower with no problem. And, I got dressed in real clothes- not pj's today! I was feeling so good, I was toying with the idea of playing a game of soccer tomorrow. Then, the girls left for an outing with some friends, and a friend of mine arrived to take me out for a walk. By the time I got my shoes on, I realized that I was exhausted. But, I went on the walk anyway. Nice and slow and it was SOOOOO good to get outside and walk through my neighborhood. It was a beautiful fall day today and perfect, cool weather. It wasn't a long walk, but I was so tired by the time we finished. I wore a very good sports bra, but the jiggling still caused some soreness. Nothing too unbearable, and well worth it. I don't have bandages over the incisions today- just lots of steri-strips covering the stitches. And lots of red welts from the tape that held the bandages down- I have been plagued by a latex allergy and I must also be allergic to the adhesive in non-latex bandages. I am so happy that I am feeling so much better and can get out. But, I think the soccer game will have to wait. I'm getting ready for a nap right now and I may go for a short drive later.
I can't believe how happy I feel right now. I am sure that I'll get sad again, but for today, I am very peaceful and happy. I have been sleeping so well at night, and I haven't been needing to take a sleeping pill like usual. I was thinking about why that is, and I believe its not only because I'm so tired, but also because all the normal daily stressors are absent for me for right now- I'm not working, not having to get the girls ready for school, not having to pick them up, not having to struggle with them during homework, not having to cook, clean, do laundry, or even change my sheets. Aside from the stress of having cancer, this is like a very relaxing, luxury vacation. This is a very weird thought I know. But, I am getting it that the reason why its so important to have people take care of me is that it frees up all sorts of mental and emotional space inside of me to just concentrate on healing. I realize that I am so very lucky to have so many people helping to carry me through this time.
I thought about calling the doctor's office to see if any of the pathology reports were back. I did finally call yesterday, but they were already closed. Of course I want to know, but a huge part of me also recognizes that if I do know right now, and its bad, that could take away from my healing. And, if I'm to have another operation right away, I really need to be recovered as much as possible from this one first. I really think I'm just supposed to be waiting and relaxing and healing right now. Wednesday will come soon enough.
I tried again to access the VA health system yesterday to see if any of my bills could be covered by them. I had a stomach ache most of yesterday, and as soon as I called the VA number, i could feel my stomach clench up. Its always so frustrating trying to get through to a real human being to ask questions. There is an answering machine with a bunch of different choices, but all the choices either led me right back to the original message, or to a phone that just rang and rang. I finally got through to a real person and found out that there is a whole separate section in the VA health system devoted to women veterans' health issues, and that breast cancer falls under a special women's health issue. The person I wanted to talk to can't be reached by phone, so I left a message with person number one on the phone. Who knows if I'll get a call back, but we'll see. I will be fine without the VA's help because I've got great medical insurance (another huge reason to be grateful), but I want to at least find out if they can cover some of this. I figured that if I'm laying in bed anyway, I may as well make some phone calls. But, the stress may not have been worth it. We'll see.
Thursday, November 20, 2008
Clear Day
Nov 20, 2008
Not quite sure how it got to be Nov 20th already. I'm still stuck on Nov 3rd when I first got the news. Can't quite fathom where 17 days went.
I am breathing deeply and clearly today. No heavy pain medication- just a bit of motrin this morning. I am so glad to have my mind back and clear. I am sore today, but when I realized that I've been more sore after an intense soccer game, I realized that I don't need the pain medication today. I am being careful to take it easy, though, because I can only handle being up and about for about 10 minutes before I get fatigued and start feeling pain. I am looking at this day of rest as the luxury that it is- I haven't ever had an entire day to lay in bed and do whatever I want- read, watch a movie, write, talk on the phone, think. I haven't done much today other than sleep, write a little, think, and watch my kitties at the end of my bed. I've never studied cats before for such a long stretch of time- they really know how to live life- they play a little, eat, poop, and sleep A LOT and when they sleep, they look like they are so thoroughly enjoying it!
I want to write about the day of the operation while I can still sort of remember it:
The kids got off to school with a cherished friend, and my other cherished friend, D (the nurse) came and picked me up. I had called her late the night before with a list of things I wanted her to be sure I didn't forget. In the morning, we got out my big wicker German shopping basket and packed it with my comfort stuff. It was a little like when I used to get ready to go to a birth as a doula. I packed my favorite remedies that people have given me and told me about these past weeks- Bach Rock Rose flower essence (drops to be put in water to "add courage and presence of mind in the face of terror or extreme fear"), Tranquility essential oil (to be rubbed on my head when I needed calming), Peace of Mind cream (peppermint smelling cream that can be put on and breathed in for stress), a Lavender scented inhaler to be put under my nose when needles are going in and I need to breathe deeply and calmly, homeopathic arnica tablets to be taken after the surgery to speed healing and reduce bruising and swelling. Along with all that, I brought some favorite books- The Woman's Book of Courage, Succulent Wild Woman, and The Power of Reiki. I thought I might have some periods of long waits, so I brought along nail polish to do my toes, but never did get to them. And, I brought along bottles of water since I could drink still for a few hours. I knew I wouldn't be able to eat all day, so the night before I baked some chocolate chip cookies and had many warm cookies and a glass of milk just before midnight. I also had a little doll that Kaycee had made for me and filled with flax seed, and a shell and wrist band of Karina's. And, a picture of the girls and I visiting my old childhood fort. The best thing of all in my basket I discovered later.
We got to Oregon Imaging and the women at the front desk all greeted me by name and were super friendly. I had to laugh at how funny it was to be back there yet again. I went in and had my breast numbed up again and this time a long wire with a hook was inserted into my breast to mark the outer edge of the cancer. The wire was left sticking out about 8 inches or so and I was sent for yet another mamogram to get a picture for the surgeon. After that, the wire was padded and taped down to my breast. Once again, the numbing stuff didn't work too well and I started feeling pain. My anxiety level went way up and i began using all the stuff from my basket. D waited with me until my driver arrived. I was escorted into a huge SUV (not a limo)- some type of Caddilac. I was in a lot of pain at this point. D was following behind me. I called my boyfriend (who was home recovering from his own medical procedure) and he told me a beautiful story about being up in a tree house. It was very relaxing and I got to feeling better.
We got to the hospital (the new one) and I was escorted into a huge train station type of area, which is where family members wait for people in surgery. There are big computer screens up that have tracking numbers so family members can track where the patients are, just like in a train station. After a short wait, I was escorted back into my little room where I changed into hospital clothes. D had me ask for some medication to calm me, but by that time the pain wasn't too bad and I didn't really want it. I had it ordered just in case. The first step after a bunch of nurse questions and forms was to get an IV in. This has never been a problem for me before, but the nurse couldn't get it after 3 tries. I was quite fed up with being stuck with needles by this point, so she got an anesthesia doctor to come in. This guy was wearing a scrub hat with soccer balls all over it and I just had to laugh- God sends me many angles, and they are often soccer related! This doctor was a soccer player and as he talked about soccer, I relaxed enough that he was able to get the needle in with very little pain. My sponsor kept holding the lavender stuff up to my nose when the needles were going in. Then I waited some more. At one point while I was waiting I opened a card that had been tucked into my basket. It was from everyone at work and it was stuffed with slips of paper with different messages on them. It was also stuffed with cash. I was so emotional already, and even typing this I get emotional again. As I read each message, I could feel the words float up just above me and hover there, surrounding me in a cloud of support. The money I have now tucked into a special wallet that Karina made for me. It will be used for anything that comes up related to this cancer. I've used it to buy my pain medication and will also use some of it to buy some good, high quality vitamins. I so appreciate this thoughtful gesture from my work family and I have re-read the messages several times already during some of my low points.
Before I forget, I bought the most amazing pair of shoes last weekend and I've been wearing them to all of my medical stuff and when I go walking. They were designed for Nike by a teenage girl who survived cancer and is now a high school soccer player. The shoes have all sorts of symbolism related to her fight with cancer, and 100% of the earnings goes to research and kids who don't have insurance at Doernbecher's Children's Hospital. If anyone wants a pair, they make great walking shoes and they are available at the Nike store. There are 5 shoes total designed by kids who have been helped at the Children's Hospital. My friend D bought a pair too and we both wore them the day of the surgery. Here's the newspaper article about them: http://www.registerguard.com/csp/cms/sites/web/search/2574737-47/story.csp
So, after the IV my sponsor came and stayed with me for a bit. She read something quite beautiful about growing from pain. Then, it was time to go to nuclear medicine for the radioactive dye stuff. I got wheeled to the other side of the hospital- through a bunch of hallways and up an elevator. It was very surreal being wheeled down the back hallways with various workmen hanging about. I felt like I was in some bad movie about a mental hospital, so I just closed my eyes and prayed. When we got there, I began panicking as the woman described how a needle would be inserted into my breast and radioactive dye would flow through me while a machine took pictures. I would need to lay still in this machine for about half an hour, with my arm above my head. The thought of yet another needle, radioactive material in my breast, being still in another machine, and my aching arm above my head was enough to make me wish I had taken that medicine that would have calmed me. I asked D, who was still with me, if it was too late for it and she said that it was too late. She held the lavender up to my nose while the needle went in. I decided to try what little I knew of Reiki to see if I could calm myself. I put one hand near my heart and closed my eyes. I started breathing deeply and I had an image of the radioactive liquid being like a blinding light sent by God to show the doctors where my cancer was hiding in my body. Like a blinding light, I felt pain when the needle went in, but it wasn't so scary. I was able to get away from the scary thought of radioactive poison and shift to the thought of healing light. Once in the machine, I could see out the window into the tops of some very tall pine trees and I was taken back to the tree house story my boyfriend told me on the phone earlier. As the big machine closed in on me, I pushed the claustrophobia away and closed my eyes again, and again had the image of God filling me with liquid light. My arm above my head immediately began going numb like my hands do when my carpel tunnel is acting up. I couldn't imagine how I would hold my arm in that position for that long. But, I kept my left hand on my body, near my heart, and pretty soon I could feel my whole body surrounded by a humming sort of energy. The numbness in my arm was absorbed by this energy and didn't bother me any more. No, I was NOT on any drugs at this point, just enjoying a deep state of meditation I think. I had an image of all of my fears and hurtful experiences from my entire life going into the cancer in my breast. I had an image of a soft, lavender colored baby blanket gathering up all of these hurts and fears. There was an image of me, strong and powerful, holding this blanket lovingly and watching as all the hurts and fears turned into a beautiful baby. All this time the baby and I were surrounded by this humming, bright energy. When the blanket was full, the strong, powerful me told the baby everything would be ok and kissed it. I then opened the blanket and tossed the baby up into the bright humming energy, straight into God's arms.
At this point, I heard a new voice in the room and felt hands on my body. I opened my eyes and looked into the face of another doctor, this one with a pen-like instrument in his hands. I said hello to him and asked him if that was the geiger counter. He smiled and said it sort of was. He used this instrument to find the spot on my body where the radioactive stuff had settled. As this geiger counter traced my body, the machine made funny noises that sounded just like R2D2 from Star Wars. I laughed and thought what a funny sense of humor God has- I get this amazing, mind-boggling experience and come out of it hearing R2D2 beeps.
Once I was done, I got wheeled back through the hallways to my room. I was so zoned out I felt like I was on the best drugs in the world. It was like this massive endorphin high. I really wasn't on any drugs at this point, and I normally would be too self-conscious and embarrassed to share such an experience on a blog. But, times are different for me now and I am no longer afraid to share stuff. In fact, I'm no longer afraid of a lot of things that used to terrify me.
I got back to my room and pretty quickly Dr. T came in with his scrub hat on. No soccer balls, just fish. At first I thought he was just in for a visit, but then I realized that he was there to take me to surgery. I began to panic a little. I said goodbye to D and my Sponsor, and as I was being wheeled away, my Sponsor told me that I was on a bed of something- love? surrounded by a legion of angels. I kept my eyes closed until we were in the operating room. I imagined my angels flying along over the top of me. The nurse was telling me everyone's names in the room, and I opened my eyes. I saw a man covered from head to toe in blue scrubs and I saw a huge tray of surgical instruments and I began bawling and I was so very, very scared. I slid onto the operating table and the nurse asked the anesthesiologist to give me something to calm me down. He put an oxygen mask over my head and told me to breathe deeply. I couldn't though, because I was crying too hard and having trouble breathing. At that point Dr. T. came over to me, held my hand, and bent down close. I could only see his eyes and hear his voice. he told me that everything was going to be ok and he had such kindness in his eyes. I told him that I appreciated him and that I trusted him. The anesthesiologist told me I'd be asleep in less than 30 seconds and the last thing I remember was looking at Dr. T and feeling him holding my hand and me trying to trust that I'd be ok.
I woke up later to a nurse yelling my name and a whole lot of pain. I looked to either side of me and saw beds of patients and lots of nurses moving about. This was creepy and scary and I asked for my friend D. The nurse was kind of mean and said that my friend couldn't be with me. I asked if she could pull some curtains around me and she did. It was better when I couldn't see all the other patients- that made me feel like I was back in the creepy mental hospital movie again. The pain was bad and she said something about having given me all the morphine I was going to get and that I would have to deal with some pain. I don't remember much, but I do remember yelling and thrashing about and being very scared. I heard another voice say to take me to my room early so I could be with my friends. Then it was all blank until I opened my eyes in my room and saw my Sponsor and D. They said I had been in the recovery room for an hour. In my room, I was still feeling lots of pain and I don't remember much but D saying that it wasn't ok that I was feeling that much pain and the nurse kind of arguing back and me thinking holy shit this really really HURTS!!!!!!!!! I heard D say something about a nursing protocol and then something was in my IV and the pain was gone. It came back about 10 minutes later and more arguing between D and the nurse and it was gone again. I vaguely remember talking to my brother on the phone and him being upset that I wasn't going to stay the night in the hospital. I got the sense from the nurses that they wanted me to hurry up and get out of there. I was very scared about going home and having that kind of pain again. Finally D explained that I hadn't been in the recovery room for the normal amount of time, so I would need a little extra time in my room before I'd be ready to go home. A big stretch of time went by and finally I was feeling no pain and the bed started to feel uncomfortable and small and the pillow was hard and I wanted to be in my own bed.
Somehow I got to feeling a bit better and I went home. That night and the next day is a blur of pain medication right now. I know my bed felt immensely wonderful and peaceful and I was in and out of sleep.
Not quite sure how it got to be Nov 20th already. I'm still stuck on Nov 3rd when I first got the news. Can't quite fathom where 17 days went.
I am breathing deeply and clearly today. No heavy pain medication- just a bit of motrin this morning. I am so glad to have my mind back and clear. I am sore today, but when I realized that I've been more sore after an intense soccer game, I realized that I don't need the pain medication today. I am being careful to take it easy, though, because I can only handle being up and about for about 10 minutes before I get fatigued and start feeling pain. I am looking at this day of rest as the luxury that it is- I haven't ever had an entire day to lay in bed and do whatever I want- read, watch a movie, write, talk on the phone, think. I haven't done much today other than sleep, write a little, think, and watch my kitties at the end of my bed. I've never studied cats before for such a long stretch of time- they really know how to live life- they play a little, eat, poop, and sleep A LOT and when they sleep, they look like they are so thoroughly enjoying it!
I want to write about the day of the operation while I can still sort of remember it:
The kids got off to school with a cherished friend, and my other cherished friend, D (the nurse) came and picked me up. I had called her late the night before with a list of things I wanted her to be sure I didn't forget. In the morning, we got out my big wicker German shopping basket and packed it with my comfort stuff. It was a little like when I used to get ready to go to a birth as a doula. I packed my favorite remedies that people have given me and told me about these past weeks- Bach Rock Rose flower essence (drops to be put in water to "add courage and presence of mind in the face of terror or extreme fear"), Tranquility essential oil (to be rubbed on my head when I needed calming), Peace of Mind cream (peppermint smelling cream that can be put on and breathed in for stress), a Lavender scented inhaler to be put under my nose when needles are going in and I need to breathe deeply and calmly, homeopathic arnica tablets to be taken after the surgery to speed healing and reduce bruising and swelling. Along with all that, I brought some favorite books- The Woman's Book of Courage, Succulent Wild Woman, and The Power of Reiki. I thought I might have some periods of long waits, so I brought along nail polish to do my toes, but never did get to them. And, I brought along bottles of water since I could drink still for a few hours. I knew I wouldn't be able to eat all day, so the night before I baked some chocolate chip cookies and had many warm cookies and a glass of milk just before midnight. I also had a little doll that Kaycee had made for me and filled with flax seed, and a shell and wrist band of Karina's. And, a picture of the girls and I visiting my old childhood fort. The best thing of all in my basket I discovered later.
We got to Oregon Imaging and the women at the front desk all greeted me by name and were super friendly. I had to laugh at how funny it was to be back there yet again. I went in and had my breast numbed up again and this time a long wire with a hook was inserted into my breast to mark the outer edge of the cancer. The wire was left sticking out about 8 inches or so and I was sent for yet another mamogram to get a picture for the surgeon. After that, the wire was padded and taped down to my breast. Once again, the numbing stuff didn't work too well and I started feeling pain. My anxiety level went way up and i began using all the stuff from my basket. D waited with me until my driver arrived. I was escorted into a huge SUV (not a limo)- some type of Caddilac. I was in a lot of pain at this point. D was following behind me. I called my boyfriend (who was home recovering from his own medical procedure) and he told me a beautiful story about being up in a tree house. It was very relaxing and I got to feeling better.
We got to the hospital (the new one) and I was escorted into a huge train station type of area, which is where family members wait for people in surgery. There are big computer screens up that have tracking numbers so family members can track where the patients are, just like in a train station. After a short wait, I was escorted back into my little room where I changed into hospital clothes. D had me ask for some medication to calm me, but by that time the pain wasn't too bad and I didn't really want it. I had it ordered just in case. The first step after a bunch of nurse questions and forms was to get an IV in. This has never been a problem for me before, but the nurse couldn't get it after 3 tries. I was quite fed up with being stuck with needles by this point, so she got an anesthesia doctor to come in. This guy was wearing a scrub hat with soccer balls all over it and I just had to laugh- God sends me many angles, and they are often soccer related! This doctor was a soccer player and as he talked about soccer, I relaxed enough that he was able to get the needle in with very little pain. My sponsor kept holding the lavender stuff up to my nose when the needles were going in. Then I waited some more. At one point while I was waiting I opened a card that had been tucked into my basket. It was from everyone at work and it was stuffed with slips of paper with different messages on them. It was also stuffed with cash. I was so emotional already, and even typing this I get emotional again. As I read each message, I could feel the words float up just above me and hover there, surrounding me in a cloud of support. The money I have now tucked into a special wallet that Karina made for me. It will be used for anything that comes up related to this cancer. I've used it to buy my pain medication and will also use some of it to buy some good, high quality vitamins. I so appreciate this thoughtful gesture from my work family and I have re-read the messages several times already during some of my low points.
Before I forget, I bought the most amazing pair of shoes last weekend and I've been wearing them to all of my medical stuff and when I go walking. They were designed for Nike by a teenage girl who survived cancer and is now a high school soccer player. The shoes have all sorts of symbolism related to her fight with cancer, and 100% of the earnings goes to research and kids who don't have insurance at Doernbecher's Children's Hospital. If anyone wants a pair, they make great walking shoes and they are available at the Nike store. There are 5 shoes total designed by kids who have been helped at the Children's Hospital. My friend D bought a pair too and we both wore them the day of the surgery. Here's the newspaper article about them: http://www.registerguard.com/csp/cms/sites/web/search/2574737-47/story.csp
So, after the IV my sponsor came and stayed with me for a bit. She read something quite beautiful about growing from pain. Then, it was time to go to nuclear medicine for the radioactive dye stuff. I got wheeled to the other side of the hospital- through a bunch of hallways and up an elevator. It was very surreal being wheeled down the back hallways with various workmen hanging about. I felt like I was in some bad movie about a mental hospital, so I just closed my eyes and prayed. When we got there, I began panicking as the woman described how a needle would be inserted into my breast and radioactive dye would flow through me while a machine took pictures. I would need to lay still in this machine for about half an hour, with my arm above my head. The thought of yet another needle, radioactive material in my breast, being still in another machine, and my aching arm above my head was enough to make me wish I had taken that medicine that would have calmed me. I asked D, who was still with me, if it was too late for it and she said that it was too late. She held the lavender up to my nose while the needle went in. I decided to try what little I knew of Reiki to see if I could calm myself. I put one hand near my heart and closed my eyes. I started breathing deeply and I had an image of the radioactive liquid being like a blinding light sent by God to show the doctors where my cancer was hiding in my body. Like a blinding light, I felt pain when the needle went in, but it wasn't so scary. I was able to get away from the scary thought of radioactive poison and shift to the thought of healing light. Once in the machine, I could see out the window into the tops of some very tall pine trees and I was taken back to the tree house story my boyfriend told me on the phone earlier. As the big machine closed in on me, I pushed the claustrophobia away and closed my eyes again, and again had the image of God filling me with liquid light. My arm above my head immediately began going numb like my hands do when my carpel tunnel is acting up. I couldn't imagine how I would hold my arm in that position for that long. But, I kept my left hand on my body, near my heart, and pretty soon I could feel my whole body surrounded by a humming sort of energy. The numbness in my arm was absorbed by this energy and didn't bother me any more. No, I was NOT on any drugs at this point, just enjoying a deep state of meditation I think. I had an image of all of my fears and hurtful experiences from my entire life going into the cancer in my breast. I had an image of a soft, lavender colored baby blanket gathering up all of these hurts and fears. There was an image of me, strong and powerful, holding this blanket lovingly and watching as all the hurts and fears turned into a beautiful baby. All this time the baby and I were surrounded by this humming, bright energy. When the blanket was full, the strong, powerful me told the baby everything would be ok and kissed it. I then opened the blanket and tossed the baby up into the bright humming energy, straight into God's arms.
At this point, I heard a new voice in the room and felt hands on my body. I opened my eyes and looked into the face of another doctor, this one with a pen-like instrument in his hands. I said hello to him and asked him if that was the geiger counter. He smiled and said it sort of was. He used this instrument to find the spot on my body where the radioactive stuff had settled. As this geiger counter traced my body, the machine made funny noises that sounded just like R2D2 from Star Wars. I laughed and thought what a funny sense of humor God has- I get this amazing, mind-boggling experience and come out of it hearing R2D2 beeps.
Once I was done, I got wheeled back through the hallways to my room. I was so zoned out I felt like I was on the best drugs in the world. It was like this massive endorphin high. I really wasn't on any drugs at this point, and I normally would be too self-conscious and embarrassed to share such an experience on a blog. But, times are different for me now and I am no longer afraid to share stuff. In fact, I'm no longer afraid of a lot of things that used to terrify me.
I got back to my room and pretty quickly Dr. T came in with his scrub hat on. No soccer balls, just fish. At first I thought he was just in for a visit, but then I realized that he was there to take me to surgery. I began to panic a little. I said goodbye to D and my Sponsor, and as I was being wheeled away, my Sponsor told me that I was on a bed of something- love? surrounded by a legion of angels. I kept my eyes closed until we were in the operating room. I imagined my angels flying along over the top of me. The nurse was telling me everyone's names in the room, and I opened my eyes. I saw a man covered from head to toe in blue scrubs and I saw a huge tray of surgical instruments and I began bawling and I was so very, very scared. I slid onto the operating table and the nurse asked the anesthesiologist to give me something to calm me down. He put an oxygen mask over my head and told me to breathe deeply. I couldn't though, because I was crying too hard and having trouble breathing. At that point Dr. T. came over to me, held my hand, and bent down close. I could only see his eyes and hear his voice. he told me that everything was going to be ok and he had such kindness in his eyes. I told him that I appreciated him and that I trusted him. The anesthesiologist told me I'd be asleep in less than 30 seconds and the last thing I remember was looking at Dr. T and feeling him holding my hand and me trying to trust that I'd be ok.
I woke up later to a nurse yelling my name and a whole lot of pain. I looked to either side of me and saw beds of patients and lots of nurses moving about. This was creepy and scary and I asked for my friend D. The nurse was kind of mean and said that my friend couldn't be with me. I asked if she could pull some curtains around me and she did. It was better when I couldn't see all the other patients- that made me feel like I was back in the creepy mental hospital movie again. The pain was bad and she said something about having given me all the morphine I was going to get and that I would have to deal with some pain. I don't remember much, but I do remember yelling and thrashing about and being very scared. I heard another voice say to take me to my room early so I could be with my friends. Then it was all blank until I opened my eyes in my room and saw my Sponsor and D. They said I had been in the recovery room for an hour. In my room, I was still feeling lots of pain and I don't remember much but D saying that it wasn't ok that I was feeling that much pain and the nurse kind of arguing back and me thinking holy shit this really really HURTS!!!!!!!!! I heard D say something about a nursing protocol and then something was in my IV and the pain was gone. It came back about 10 minutes later and more arguing between D and the nurse and it was gone again. I vaguely remember talking to my brother on the phone and him being upset that I wasn't going to stay the night in the hospital. I got the sense from the nurses that they wanted me to hurry up and get out of there. I was very scared about going home and having that kind of pain again. Finally D explained that I hadn't been in the recovery room for the normal amount of time, so I would need a little extra time in my room before I'd be ready to go home. A big stretch of time went by and finally I was feeling no pain and the bed started to feel uncomfortable and small and the pillow was hard and I wanted to be in my own bed.
Somehow I got to feeling a bit better and I went home. That night and the next day is a blur of pain medication right now. I know my bed felt immensely wonderful and peaceful and I was in and out of sleep.
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