During my skin saving mastectomy, I had "expanders" put under my chest wall. These silicone bags mimic breasts. When they were inserted they put 200 cc's of Saline in them. So when I came home from the hospital, I was swollen and I wasn't flat. That's about all I'm going to say about that.
So, Friday I had Saline added to my Ta Ta's. In case you hadn't heard, I'm not calling them breasts anymore, I'm calling them Ta Ta's. These aren't really breasts just a close facsimile. I can feel the areas where there are seams and edges. The final implants won't have those and are more comfortable. These feel awkward most of the time. Although some of that can just be the nerves recovering from the damage of the surgery.
It has been almost 6 weeks since my surgery and the muscles in my chest were finally comfortable. The 200 lb man that has been standing my chest since the surgery was gone. The wounds are completely healed and I was ready for the next steps.
Who knew that I got to pick what size I will be? The expanders that are in place now do exactly that: expand. They just keep adding saline. There are magnets in the expanders. I went into the Plastic Surgeon's office and the nurse, also named Michelle, put a little tiny magnet against the top of my chest and it wiggled as she moved it. Then she inserted a needle and pumped liquid in at the spot where the magnet is. There is a special sealed area where they can insert and it stays in. At some point you have to just laugh at the ludicrousness of all of this. And then you marvel at the medical technology that makes this all possible.
It didn't hurt much. On one side, my nerves are still so damaged from the surgery that I didn't even feel the needle. The other hurt a bit. But I now have 250 cc's of Saline and am on my way to about 400 cc's (that is about what I was before, they say).
It would be entertaining and Ken and I have joked to think that they could be adjustable week by week. Have a black tie, insert saline. Going bike riding for the week, remove some. The world could be an even stranger place. But I do have to say, as I have obsessed about the new Ta Ta's for a day, it does feel better to be more normal sized. I mean, I didn't think I was even feeling bad about them before. I thought I had more important things to worry about. But I just feel better to not have them be quite so misshapen with the scars being so prominent. With the addition of Saline, they are starting to look like, well, like Ta Ta's.
Tuesday, January 26, 2010
Sunday, January 24, 2010
The Shearing off of my Hair (with Photos)
Saturday I shaved my head. I was 12 days into chemotherapy and my hair had already started coming out as I wash it in the shower and on my clothes. But it hasn't started coming out in clumps. That would normally happen day 14-18. Day 14 we have clients in the office, day 16-18 I will be in Washington DC on business. I'm not prepared to wander with my hair coming out in clumps. 
Better to shave it off preemptively. I was going to wait until Tuesday to do it. My friend Ellen was worried about me. She wanted to be there to hold my hand and I wanted her to be there too. So Saturday it was. Then we did lunch at the local Thai place and she and I came home and watched chick flicks. She has great movies and she brought me a dozen.
Better to shave it off preemptively. I was going to wait until Tuesday to do it. My friend Ellen was worried about me. She wanted to be there to hold my hand and I wanted her to be there too. So Saturday it was. Then we did lunch at the local Thai place and she and I came home and watched chick flicks. She has great movies and she brought me a dozen. As you can see I didn't do much to my hair before we went. But this is me! I think I look a little tired but I really felt good. I joked all morning with my son. He said, my losing my hair is depressing, I said it was an adventure, I've never been bald before!
The shears don't feel bad. We sat and I joked that we should be playing the music from GI Jane where she shaves her own head. It takes longer than I thought
Then it is done. Ellen NEVER let go of my hand and Kevin was a maestro with the shears.
It feels pretty weird but I am fine. I think normally I will wear a hat, cap, scarf, and even one of a couple of wigs. I picked up a few cute caps and got a few cute ones for gifts. The photos are those of my own personal paparazzi and husband, Ken.
Friday, January 22, 2010
CAVU
When you are sick, you start thinking about the people who have had an impact on your life. There are the easy ones: my fourth grade teacher. She was one the first one to teach me a quote. "Today is the first day of the rest of your life." It was on her board the first day of school. There are others who are permanent influences: my parents, my husband and son, college roommates and friends. But then there are people who touch your life for an instant and somehow are in your memory, forever guiding you.
I met a Guy. To be honest, 20 plus years later, I can't even remember his name. I met him when I was in my 20's. I went with a friend to the island of St. Thomas for a long weekend. Now, I know you think when I say I met I guy you know what I mean, but this wasn't anything like that!
On the island trip, my friend and I decided to take a day sail. The guy owned the boat with his wife and he took us out for the day into the most beautiful waters and sunshine I have ever seen. He was a retired Navy pilot. And although he was tan, healthy and very strong, I thought he was ancient at the time. Looking back, I think he was 40 something. He had done 20 years in the military as a pilot and retired. He and his wife were hanging around the island and occasionally taking tourists on day sails.
My friend laid on the deck and soaked in the sun. I remember thinking talking to him was a lot more interesting. We sat and talked for a few hours and he told me his story. He told how he had dreamed of flying growing up and the work he had done to make it a reality. He loved flying. He also loved sailing. After his military career, he and his wife decided to sell their house, leave their families, give up everything and follow his next dream of sailing around the Caribbean.
This ex-pilot taught me an acronym, CAVU. Ceiling and Visibility Unlimited. It is a term that military pilots use, he told me. I think it was the name of his boat. But I couldn't even swear to that. We talked about CAVU. He told me to think about it as being able to see forever into the distance. For me in looking at his life I decided it was a fitting description for a code that he lived that meant anything is possible. I imagined that freedom you get when you are above the clouds in a plane and thought about how cool it must be for a pilot who is there alone. I thought about the sheer size of the sky. I thought about life as a blank slate you get to create it on your own.
I admired him. He took risks to do what he thought would make him happy. He is in my thoughts even years afterward. I think of CAVU every few weeks or month when I think about accepting change and being willing to take risks to get what I want.
I grew up in a pretty conventional suburban life. For college, I wanted to go to California Santa Cruz. My parents promptly said no. I even think they went so far as to say a few more emphatic and choice words. So I graduated from high school a year early and went to work. A year later, my uncle called and said, "go to Miami of Ohio. It's a good school and conservative enough your parents will pay for it. You'll get a good education. " I adored my uncle (he was the one in California I wanted to go to school to be near). So I applied to one and only one school and went off to Miami of Ohio. By the time I was sailing around the Caribbean I had changed schools and graduated from Northwestern University (it was a little less conservative).
On the boat, hearing someone talk about being daring enough to have a dream to be a pilot, be one and then later in life to have another dream, a totally different dream of living and sailing really shook me up. That night as we sailed back into port, we watched dolphins swim around the boat.
I remember walking off his boat and the next day going shopping for jewelry. I was bound and determined to find the perfect dolphin charm to wear on a chain. I went to 7 or 8 stores looking. My friend got irritated that I wouldn't "just buy one already". It had to be something that I could see myself wearing forever. I found it, at the last store. And I immediately christened the charm, CAVU. It is gold, with a single sparkling diamond in the eye. I wear it today.
CAVU is a token that I wear in my life that reminds me that anything is possible. All it take is courage and the conviction to make choices and take risks to make my dreams a reality. My Ceiling and Visibility is Unlimited.
I met a Guy. To be honest, 20 plus years later, I can't even remember his name. I met him when I was in my 20's. I went with a friend to the island of St. Thomas for a long weekend. Now, I know you think when I say I met I guy you know what I mean, but this wasn't anything like that!
On the island trip, my friend and I decided to take a day sail. The guy owned the boat with his wife and he took us out for the day into the most beautiful waters and sunshine I have ever seen. He was a retired Navy pilot. And although he was tan, healthy and very strong, I thought he was ancient at the time. Looking back, I think he was 40 something. He had done 20 years in the military as a pilot and retired. He and his wife were hanging around the island and occasionally taking tourists on day sails.
My friend laid on the deck and soaked in the sun. I remember thinking talking to him was a lot more interesting. We sat and talked for a few hours and he told me his story. He told how he had dreamed of flying growing up and the work he had done to make it a reality. He loved flying. He also loved sailing. After his military career, he and his wife decided to sell their house, leave their families, give up everything and follow his next dream of sailing around the Caribbean.
This ex-pilot taught me an acronym, CAVU. Ceiling and Visibility Unlimited. It is a term that military pilots use, he told me. I think it was the name of his boat. But I couldn't even swear to that. We talked about CAVU. He told me to think about it as being able to see forever into the distance. For me in looking at his life I decided it was a fitting description for a code that he lived that meant anything is possible. I imagined that freedom you get when you are above the clouds in a plane and thought about how cool it must be for a pilot who is there alone. I thought about the sheer size of the sky. I thought about life as a blank slate you get to create it on your own.
I admired him. He took risks to do what he thought would make him happy. He is in my thoughts even years afterward. I think of CAVU every few weeks or month when I think about accepting change and being willing to take risks to get what I want.
I grew up in a pretty conventional suburban life. For college, I wanted to go to California Santa Cruz. My parents promptly said no. I even think they went so far as to say a few more emphatic and choice words. So I graduated from high school a year early and went to work. A year later, my uncle called and said, "go to Miami of Ohio. It's a good school and conservative enough your parents will pay for it. You'll get a good education. " I adored my uncle (he was the one in California I wanted to go to school to be near). So I applied to one and only one school and went off to Miami of Ohio. By the time I was sailing around the Caribbean I had changed schools and graduated from Northwestern University (it was a little less conservative).
On the boat, hearing someone talk about being daring enough to have a dream to be a pilot, be one and then later in life to have another dream, a totally different dream of living and sailing really shook me up. That night as we sailed back into port, we watched dolphins swim around the boat.
I remember walking off his boat and the next day going shopping for jewelry. I was bound and determined to find the perfect dolphin charm to wear on a chain. I went to 7 or 8 stores looking. My friend got irritated that I wouldn't "just buy one already". It had to be something that I could see myself wearing forever. I found it, at the last store. And I immediately christened the charm, CAVU. It is gold, with a single sparkling diamond in the eye. I wear it today.
CAVU is a token that I wear in my life that reminds me that anything is possible. All it take is courage and the conviction to make choices and take risks to make my dreams a reality. My Ceiling and Visibility is Unlimited.
Tuesday, January 19, 2010
The pony is here...
So just to check in with status:
Five weeks ago yesterday I had surgery. 35 days ago. I now have fairly decent mobility in my arms and shoulders. I can put my arms over my head. I can touch my shoulder blades behind me. I can do reverse prayer position. Which means I can put my hands behind my back in prayer position with the palms touching. My yoga has helped me significantly. I can't lay on my back with my arms overhead straight by my ears but I keep trying. I still have some mobility issues with my left shoulder. But then I always did, even before surgery. I get up and my chest is chronically tight. I am not to lift anything heavier than 5 pounds until next Monday. Don't tell anyone that I did 3 plank positions during 3 Sun Salutations (a yoga series) on Sunday (it didn't hurt and the instruction from the doctor was don't strain). I am, probably because the drugs have me so relaxed, better able to do Lotus position than I ever was.
One week ago I had my first chemotherapy session. It is the first of four. Three more to go. The first few days were filled with bone pain but I am doing much better the last couple days as long as I pace myself.
I am one week away from losing my hair. I have picked a couple of wigs, had them trimmed to look better and I am ready to shave off my hair because the itching and weird sensations in my scalp are annoying. But I will wait until it "really" starts to fall out before shaving. It is now just "kind of" starting to fall out.
I am working an hour or two a day. I think by the end of the week I will be working 2-3 hours a day. Each day I prioritize so that , I stretch, do yoga, meditate and spend 20 minutes on the treadmill if I can. Then I work a bit.
You can decide why you think I feel so optimistic. I think it is because yesterday, Jonathon and Ruth brought me a pony. He is big, beautiful, soft gray and very cuddly. I am positive I am doing better because there is a pony in here somewhere.
Five weeks ago yesterday I had surgery. 35 days ago. I now have fairly decent mobility in my arms and shoulders. I can put my arms over my head. I can touch my shoulder blades behind me. I can do reverse prayer position. Which means I can put my hands behind my back in prayer position with the palms touching. My yoga has helped me significantly. I can't lay on my back with my arms overhead straight by my ears but I keep trying. I still have some mobility issues with my left shoulder. But then I always did, even before surgery. I get up and my chest is chronically tight. I am not to lift anything heavier than 5 pounds until next Monday. Don't tell anyone that I did 3 plank positions during 3 Sun Salutations (a yoga series) on Sunday (it didn't hurt and the instruction from the doctor was don't strain). I am, probably because the drugs have me so relaxed, better able to do Lotus position than I ever was.
One week ago I had my first chemotherapy session. It is the first of four. Three more to go. The first few days were filled with bone pain but I am doing much better the last couple days as long as I pace myself.
I am one week away from losing my hair. I have picked a couple of wigs, had them trimmed to look better and I am ready to shave off my hair because the itching and weird sensations in my scalp are annoying. But I will wait until it "really" starts to fall out before shaving. It is now just "kind of" starting to fall out.
I am working an hour or two a day. I think by the end of the week I will be working 2-3 hours a day. Each day I prioritize so that , I stretch, do yoga, meditate and spend 20 minutes on the treadmill if I can. Then I work a bit.
You can decide why you think I feel so optimistic. I think it is because yesterday, Jonathon and Ruth brought me a pony. He is big, beautiful, soft gray and very cuddly. I am positive I am doing better because there is a pony in here somewhere.
Monday, January 18, 2010
Sunday-flying in my dreams
So Saturday night, I was only hoping just to sleep. I hadn't slept but 3 hours the night before and it was a rough day. I took a Vicodin(Narco) pain killer when I went to bed at 10 p.m. I cringed as I woke up at 1 a.m. thinking, "oh, no." But I was almost instantly blissful. There was NO pain. I was able to roll over and fall back asleep. I woke up a few more times but slept on and off until 7 a.m.
Sleep made Sunday a good day. I got up, did a mile on the treadmill. After the treadmill, I stretched, did yoga and meditated for an hour. A quick stop at the Sports store to pick up lots of prizes for our new Healthy Lifestyles work contest. (I don't want to miss all the fun!) Then Ken took me out to Mexican for lunch.
The rest of the day didn't matter. It was fine that I had to rest and watch movies, read and hang out. It was fine that I had an upset stomach. I was up and about for a while.
I hesitate to say that I turned a corner as this morning I woke up with a sore throat and since last night every piece of my skin hurts to the touch. But I feel like I turned a corner. The bone pain is mostly gone.
I was unprepared for the bone pain. It was like little poisonous fish were swimming through my body and they had razor stickers in their noses. Every time they touched somewhere it was a stabbing stick, and then an ache. I didn't even know anyone could feel individual ribs but for those few days I could. The pain would shoot from one rib to an ankle to a knee to a wrist. It didn't stop until I upped the steroids a lot. The nurses say it is from swelling from the Taxotere. And it happens rarely.
I tried to go the whole day Sunday with nothing but Advil and ended up taking a Narco Sunday night at midnight after tossing and turning for a couple of hours. Can you tell I'm a little stubborn about the not wanting to take drugs?
On the drugs, I dreamed I was flying. I was in a city, flying over buildings and feeling free and light. Pain free. I love that in dreams. I had these brilliant thoughts of how I would explain the flying and the wonderful feelings to you in the middle of the night. But the thoughts slipped away this morning. Drug dreams. Free from pain.
Sleep made Sunday a good day. I got up, did a mile on the treadmill. After the treadmill, I stretched, did yoga and meditated for an hour. A quick stop at the Sports store to pick up lots of prizes for our new Healthy Lifestyles work contest. (I don't want to miss all the fun!) Then Ken took me out to Mexican for lunch.
The rest of the day didn't matter. It was fine that I had to rest and watch movies, read and hang out. It was fine that I had an upset stomach. I was up and about for a while.
I hesitate to say that I turned a corner as this morning I woke up with a sore throat and since last night every piece of my skin hurts to the touch. But I feel like I turned a corner. The bone pain is mostly gone.
I was unprepared for the bone pain. It was like little poisonous fish were swimming through my body and they had razor stickers in their noses. Every time they touched somewhere it was a stabbing stick, and then an ache. I didn't even know anyone could feel individual ribs but for those few days I could. The pain would shoot from one rib to an ankle to a knee to a wrist. It didn't stop until I upped the steroids a lot. The nurses say it is from swelling from the Taxotere. And it happens rarely.
I tried to go the whole day Sunday with nothing but Advil and ended up taking a Narco Sunday night at midnight after tossing and turning for a couple of hours. Can you tell I'm a little stubborn about the not wanting to take drugs?
On the drugs, I dreamed I was flying. I was in a city, flying over buildings and feeling free and light. Pain free. I love that in dreams. I had these brilliant thoughts of how I would explain the flying and the wonderful feelings to you in the middle of the night. But the thoughts slipped away this morning. Drug dreams. Free from pain.
Saturday, January 16, 2010
A Rough Few Days-- where is the Pony
I am optimist. One of my favorite lines is from an old joke. I don't even remember the whole joke anymore. Part of it is that two children come home to find their Dad has filled two bedrooms with manure as a present for each of them (I always forget why, I think they were spoiled and he wanted to teach them a lesson). One child, walks away in disgust. The other starts digging. The father asks, "why are you digging?" The child responds, "with all this *&;%#, there must be a pony in here somewhere."
So, Ken and I joke about the pony whenever things are tough. I say, "there must be a pony in here somewhere." I am always looking for the pony.
I have had a rough few days. I am tired, tired enough that my son asked me if I was on pain killers this morning or if I was just spacey. No pain killers yet today; just lack of sleep. Only three hours last night. That is not enough even for me. The side effects have been worse than I expected. Lots of bone pain, body aches, upset stomach. Worse than the worst flu I have ever had. I have no energy and am feeling sorry for myself.
Sorry, don't mean to scare anyone. I think other people don't have this many issues. I hope anyway. The nurses have been great. They have changed my medications twice the last couple days to try and find what will work best. The next time will be easier they say because we will start with the right combination. They also think my body will adjust and get used to this. I asked why this many symptoms this early? They originally told me the side effects wouldn't kick in until around 7 days. Bone pain is different and happens within a day or two. I think they forget to mention that one. I asked, "what symptoms are next?" And one nurse responded, "hopefully nothing."
I sat this morning and wondered if she was blatantly lying but I am thinking the pony must be visiting her house.
I will do yoga today and stretch, as soon as my stomach settles down. That will help. then I will sleep as much as I can with the help of a pain killer, if I need it.
So, Ken and I joke about the pony whenever things are tough. I say, "there must be a pony in here somewhere." I am always looking for the pony.
I have had a rough few days. I am tired, tired enough that my son asked me if I was on pain killers this morning or if I was just spacey. No pain killers yet today; just lack of sleep. Only three hours last night. That is not enough even for me. The side effects have been worse than I expected. Lots of bone pain, body aches, upset stomach. Worse than the worst flu I have ever had. I have no energy and am feeling sorry for myself.
Sorry, don't mean to scare anyone. I think other people don't have this many issues. I hope anyway. The nurses have been great. They have changed my medications twice the last couple days to try and find what will work best. The next time will be easier they say because we will start with the right combination. They also think my body will adjust and get used to this. I asked why this many symptoms this early? They originally told me the side effects wouldn't kick in until around 7 days. Bone pain is different and happens within a day or two. I think they forget to mention that one. I asked, "what symptoms are next?" And one nurse responded, "hopefully nothing."
I sat this morning and wondered if she was blatantly lying but I am thinking the pony must be visiting her house.
I will do yoga today and stretch, as soon as my stomach settles down. That will help. then I will sleep as much as I can with the help of a pain killer, if I need it.
Thursday, January 14, 2010
I am getting a wig (or two or three)
Any suggestions for what color I should go? Should I be a blonde? A redhead? Short and curly? Business like? This is clearly a time when I should have fun.
Who knew there were this many choices in wigs. I ordered a couple online and they got here in the last couple of days. I look pretty strange. I promise I will post some pictures. But, NOT the blonde one. That is going straight back into the box. Way too weird, and much too grey.
Friday morning I made an appointment with Kevin, my friend, hairdresser and soon to be head-shaver. He and I will review the wigs and see what he thinks and what he thinks he can modify to look the best and most un-wiglike.
Hopefully, I will feel better so I can go. Today was the roughest day so far. I'm back on the Vicodine for the unrelenting bone and muscle pain. I haven't left the Laz-y-Boy in the living room all day. Ken brought me lunch and more fruit. Adam had a long lunch break from school and came and joined me for lunch. It was wonderful. I did force myself to shower and stretch but the treadmill was contemplated and roundly rejected. Movies and a nap.
Who knew there were this many choices in wigs. I ordered a couple online and they got here in the last couple of days. I look pretty strange. I promise I will post some pictures. But, NOT the blonde one. That is going straight back into the box. Way too weird, and much too grey.
Friday morning I made an appointment with Kevin, my friend, hairdresser and soon to be head-shaver. He and I will review the wigs and see what he thinks and what he thinks he can modify to look the best and most un-wiglike.
Hopefully, I will feel better so I can go. Today was the roughest day so far. I'm back on the Vicodine for the unrelenting bone and muscle pain. I haven't left the Laz-y-Boy in the living room all day. Ken brought me lunch and more fruit. Adam had a long lunch break from school and came and joined me for lunch. It was wonderful. I did force myself to shower and stretch but the treadmill was contemplated and roundly rejected. Movies and a nap.
Tuesday, January 12, 2010
Steroids, oh the joy of Steroids
Today I could have biked down Lakeshore Drive and back (22 miles) in a heartbeat. Even the 27 degree weather would have been fine. As a friend has said, a bad day outside is better than any day inside.
I felt good. Strong, clearheaded and so I worked. Just a few hours from home in the morning touching base with all the great people at my office on little things that I wanted to be involved in.
Then I walked on the treadmill and literally had to pace myself and hold myself back from going too fast or too long. Then I stretched arms, shoulders and chest. I really feel like I am making progress with my mobility. A few more phone calls and at 3 p.m. I crawled into bed determined to rest. I was too wired for sleep but I was starting to feel this headache and knew I should rest. By 4:30 p.m. my temperature was going up. It is a couple of degrees above normal and my face is pink. The headache is worse.
Tonight will be a quiet night. A dinner at home, a movie. Sleep. Unfortunately I have to learn the rhythm of chemo.
I felt good. Strong, clearheaded and so I worked. Just a few hours from home in the morning touching base with all the great people at my office on little things that I wanted to be involved in.
Then I walked on the treadmill and literally had to pace myself and hold myself back from going too fast or too long. Then I stretched arms, shoulders and chest. I really feel like I am making progress with my mobility. A few more phone calls and at 3 p.m. I crawled into bed determined to rest. I was too wired for sleep but I was starting to feel this headache and knew I should rest. By 4:30 p.m. my temperature was going up. It is a couple of degrees above normal and my face is pink. The headache is worse.
Tonight will be a quiet night. A dinner at home, a movie. Sleep. Unfortunately I have to learn the rhythm of chemo.
Monday, January 11, 2010
Chemo 1 of 4 is finished....
Yesterday I watched A Few Good Men (someone asked) and today to Chemo I wore the black velour sweatsuit. It was the right choice as I spent most the day laying in a hospital bed. I tried not to. I tried to sit in one of the chairs in the room when we got there because I don't want to be a patient. But I am and so I laid in bed and got hooked to a bunch of different IV lines in my left hand.
The rooms are private. Little 10 x 8 or 10 x 10 with a bed, comfortable chair or two and a flat screen on the wall for TV and DVD's. Next time I will know to bring a movie. Ken sat with me as we listened to 30 minutes of what to expect and what to do when/if it happens.
Then the fun begins. As it started, I realized that I couldn't really imagine how this would go or how it would feel. It is perhaps too big for my mind to have a handle on. Here I was sitting in a room where they are pushing poison into you with intent to kill parts of you. I was strong during most of the prep work. Then a little scared as the first drugs caused rashes on my arms and itching. I worried about an allergic reaction but the first 2 drugs (steroids, anti-nausea meds) went fine.
Then we got to the C of the T & C cocktail. 30 minute drip. I experienced the one possible side effect that for the last 10 minutes I had a splitting headache and huge pressure in my sinuses. But then we were done and it went away. I had thought that perhaps I could have a nice time reading while this was all happening. Another of the side effects was that my eyesight went in and out, perhaps because of the fluid making them swell? I couldn't concentrate. So there went that. Mostly I just sat around.
Then on to the T. They give this drug last I have decided because it is the worst. The side effects were immediate. My stomach clenched. Over 10 minutes in I had a scary allergic reaction. My face felt like I was on fire and went bright red. More seriously I couldn't breathe and my throat and lungs were closing. Pain swept across my back muscles. Ken rang the nurse and three nurses were there in 12 seconds. Within 60 seconds, they had pulled the drug from the IV and I had been pumped full of Benadryl. They also injected more steroids. Over the next five to ten minutes I recovered. It was 5 minutes of panic in 6 hours of care. (I'm trying to keep it in perspective for myself.) We waited 30 minutes for the drugs to kick in. I asked for Ativan (anti-anxiety medication) as I was shaking inside terrified that I would have another allergic reaction. 1/2 dose worked to reduce the shakes.
I asked the nurse if anyone had ever been so allergic that they had been unable to complete the treatment? No. "Do you keep just pumping them full of drugs until they can take it?" Yes. "Do you think it will happen again?" No, I think we've given you enough. I can't even think about what it says about how poisonous this stuff is.
The second round went fine. No allergic reaction. As soon as it was done, I bolted. I so wanted to get out of that place. Nice people but...
So I am home. Feeling weird-ed out by drugs again so this may or may not make sense. The only two side effects I have so far are dry mouth and an upset stomach. But over the next few days I will be on enough steroids that they will mask a bunch of symptoms. I had thought the chemo day would be easy and the side effects difficult but here is hoping that the day is hard and the side effects don't happen.
Looking forward.
The rooms are private. Little 10 x 8 or 10 x 10 with a bed, comfortable chair or two and a flat screen on the wall for TV and DVD's. Next time I will know to bring a movie. Ken sat with me as we listened to 30 minutes of what to expect and what to do when/if it happens.
Then the fun begins. As it started, I realized that I couldn't really imagine how this would go or how it would feel. It is perhaps too big for my mind to have a handle on. Here I was sitting in a room where they are pushing poison into you with intent to kill parts of you. I was strong during most of the prep work. Then a little scared as the first drugs caused rashes on my arms and itching. I worried about an allergic reaction but the first 2 drugs (steroids, anti-nausea meds) went fine.
Then we got to the C of the T & C cocktail. 30 minute drip. I experienced the one possible side effect that for the last 10 minutes I had a splitting headache and huge pressure in my sinuses. But then we were done and it went away. I had thought that perhaps I could have a nice time reading while this was all happening. Another of the side effects was that my eyesight went in and out, perhaps because of the fluid making them swell? I couldn't concentrate. So there went that. Mostly I just sat around.
Then on to the T. They give this drug last I have decided because it is the worst. The side effects were immediate. My stomach clenched. Over 10 minutes in I had a scary allergic reaction. My face felt like I was on fire and went bright red. More seriously I couldn't breathe and my throat and lungs were closing. Pain swept across my back muscles. Ken rang the nurse and three nurses were there in 12 seconds. Within 60 seconds, they had pulled the drug from the IV and I had been pumped full of Benadryl. They also injected more steroids. Over the next five to ten minutes I recovered. It was 5 minutes of panic in 6 hours of care. (I'm trying to keep it in perspective for myself.) We waited 30 minutes for the drugs to kick in. I asked for Ativan (anti-anxiety medication) as I was shaking inside terrified that I would have another allergic reaction. 1/2 dose worked to reduce the shakes.
I asked the nurse if anyone had ever been so allergic that they had been unable to complete the treatment? No. "Do you keep just pumping them full of drugs until they can take it?" Yes. "Do you think it will happen again?" No, I think we've given you enough. I can't even think about what it says about how poisonous this stuff is.
The second round went fine. No allergic reaction. As soon as it was done, I bolted. I so wanted to get out of that place. Nice people but...
So I am home. Feeling weird-ed out by drugs again so this may or may not make sense. The only two side effects I have so far are dry mouth and an upset stomach. But over the next few days I will be on enough steroids that they will mask a bunch of symptoms. I had thought the chemo day would be easy and the side effects difficult but here is hoping that the day is hard and the side effects don't happen.
Looking forward.
Sunday, January 10, 2010
Chemo 1/4 starting 1/11/10
Less than 24 hours until chemotherapy starts and I am being such a girl. I have been debating all morning about what one should wear for chemo. I can't decide. Should I wear comfortable yoga pants? Should I wear the new cute gap black velour sweatsuit I got before the surgery? Do I wear jeans or business clothes? What will make me feel most like that the cancer should fear me and not the other way around?
At least thinking about this is distracting and helps pass the time. This morning I did 30 minutes on the treadmill and an hour of yoga and stretching my arms and shoulders. The arm and shoulder routine I have nicknamed the torture routine but for kicks I have added some yoga stretches to it. I am having some mobility issues with my left shoulder and have pretty extensive scar tissue under my left underarm. These have to be improved with extensive, painful stretching. They simply won't fix themselves.
It's lunch time so I will have a protein shake and then rest for the afternoon watch some Demi Moore movie, either GI Jane or A Few Good Men. Those are great kick butt movies and I need to kick butt.
At least thinking about this is distracting and helps pass the time. This morning I did 30 minutes on the treadmill and an hour of yoga and stretching my arms and shoulders. The arm and shoulder routine I have nicknamed the torture routine but for kicks I have added some yoga stretches to it. I am having some mobility issues with my left shoulder and have pretty extensive scar tissue under my left underarm. These have to be improved with extensive, painful stretching. They simply won't fix themselves.
It's lunch time so I will have a protein shake and then rest for the afternoon watch some Demi Moore movie, either GI Jane or A Few Good Men. Those are great kick butt movies and I need to kick butt.
Saturday, January 9, 2010
Radiation Oncology --- 50/50 for Radiation
So today I spent two hours hanging around with a radiation oncologist who specializes in breast cancer only to learn that he thinks that MAYBE I should have radiation. It's my decision.
I am standing in a place where there is no bright white line to follow for treatment.
The arguments for radiation (which would be 6 weeks of daily treatment Monday through Friday following Chemotherapy). One; I am young; I had a relatively aggressive form of cancer (proven because my tumor was small but had already traveled to my lymph node), and the cancer traveled across my chest wall through that lymphatic system to my lymph node. Because the sentinal node biopsy only took 5 lymph nodes, and I did not have a full axillary dissection (where they take more nodes), there is a 9% risk that I have some other node involvement.
Chemo is great at treating little bits of cancer cells floating around your body. It's not so great at treating "clumps" of cancer cells. Another lymph node involved would be a "clump". Radiation is great at getting clumps. Not that they know if or where the clump is but if they shoot radiation at my chest wall (where the cancer traveled through to the lymph) and the lymph nodes than if it is there they will get it.
So those are the arguments for getting radiation.
Here are the arguments against. Radiation is rotten. It has more long term negative health consequences than chemotherapy. Skipping quickly over the short term radiation side effects of 6-8 weeks of exhaustion, dry cough, potential pneumonia and skin irritation), some long term side effects can include: scarring of the lung tissue where radiation was applied, lymphedema (I'll come back to this), and skin healing ability. Oh, throw in the risk that radiation actually can cause cancer 20 years down the road. Radiation also increases the likelihood that I will have issues with my reconstruction, including possibly additional surgeries and an unsatisfactory result (his exact words). Dr. S said, "usually Dr. F and I can come up with a satisfactory result." I don't really like the word "usually". Radiation increases the complications in reconstruction because it will damage the skin and cause it not to be able to heal. It results in more scar tissue. Most commonly I might have to have multiple surgeries for the reconstruction. Worst case (highly unlikely but possible) I would not be able to be reconstructed on that side.
In addition, If they radiate my lymph nodes my risk of lymphedema increases from 2-3 % to 30%. Your lymph glands are what carry fluid around your body. They drain the fluid from your hands/arms back into your core. If you have lymph damage then the drainage doesn't happen. This results in arm swelling. People with lymphedema have to get treatment (massage, wear tight arm support, and wraps) to encourage the drainage to work. This would last the rest of my life. Exercise makes it better. I struggle with figuring out how we would bike across the country if I had an arm needing constant attention. Perhaps I could bring our masseuse? She might be up for a road trip across the country!
The doctor yesterday openly admitted that medical professionals underestimate quality of life issues. I, of course, always a smart mouth, replied, "yes, but you have to be alive to have quality of life issues." He laughed and agreed and repeated what he had said earlier, women who get only chemo have a higher morbidity rate with recurrence.
What this doesn't address is the uniqueness of cancer, even breast cancer. No one can ever say which cancers will reoccur. So, how far do you go to avoid the risk of recurrence? Do you compromise your quality of life for the next 30 years to ensure that you have the lowest possible risk of recurrence? And even with that, if I have a really unique strain might it not come back anyway? No one is willing to really say what my current risk for recurrence is, but I think it is somewhere in the 5-10% range.
There is no research study that shows one way or the other. In the limited studies they do have (done in Europe and Canada 10 years ago where the surgery was probably not as good as mine) more women who got chemo and radiation vs. chemo alone lived. So I fall in the 50/50 bucket. If Dr. S had a randomized trial he said he would put me in it. He tried to run a trial like this a few years and couldn't get enough people with the right characteristics to enroll so it closed and we don't know the answers.
I am much more scared of radiation than chemo. Dr. S advised to take my actual pathology slides to another institution and get a second opinion on the pathology and the radiation oncology suggestion. He suggested the only other true breast cancer radiation oncology specialist in Chicago at Rush. I have time, I just need to see her before my last cycle of chemo begins March 15th.
To have something to look forward to, Ken and I booked a long weekend for our family in Scottsdale in mid-February (after 1/2 the chemo is done). We got a great offer for a room by email (the one I had been fantasizing about). Just a few days in the sun. I'm looking forward.
I am standing in a place where there is no bright white line to follow for treatment.
The arguments for radiation (which would be 6 weeks of daily treatment Monday through Friday following Chemotherapy). One; I am young; I had a relatively aggressive form of cancer (proven because my tumor was small but had already traveled to my lymph node), and the cancer traveled across my chest wall through that lymphatic system to my lymph node. Because the sentinal node biopsy only took 5 lymph nodes, and I did not have a full axillary dissection (where they take more nodes), there is a 9% risk that I have some other node involvement.
Chemo is great at treating little bits of cancer cells floating around your body. It's not so great at treating "clumps" of cancer cells. Another lymph node involved would be a "clump". Radiation is great at getting clumps. Not that they know if or where the clump is but if they shoot radiation at my chest wall (where the cancer traveled through to the lymph) and the lymph nodes than if it is there they will get it.
So those are the arguments for getting radiation.
Here are the arguments against. Radiation is rotten. It has more long term negative health consequences than chemotherapy. Skipping quickly over the short term radiation side effects of 6-8 weeks of exhaustion, dry cough, potential pneumonia and skin irritation), some long term side effects can include: scarring of the lung tissue where radiation was applied, lymphedema (I'll come back to this), and skin healing ability. Oh, throw in the risk that radiation actually can cause cancer 20 years down the road. Radiation also increases the likelihood that I will have issues with my reconstruction, including possibly additional surgeries and an unsatisfactory result (his exact words). Dr. S said, "usually Dr. F and I can come up with a satisfactory result." I don't really like the word "usually". Radiation increases the complications in reconstruction because it will damage the skin and cause it not to be able to heal. It results in more scar tissue. Most commonly I might have to have multiple surgeries for the reconstruction. Worst case (highly unlikely but possible) I would not be able to be reconstructed on that side.
In addition, If they radiate my lymph nodes my risk of lymphedema increases from 2-3 % to 30%. Your lymph glands are what carry fluid around your body. They drain the fluid from your hands/arms back into your core. If you have lymph damage then the drainage doesn't happen. This results in arm swelling. People with lymphedema have to get treatment (massage, wear tight arm support, and wraps) to encourage the drainage to work. This would last the rest of my life. Exercise makes it better. I struggle with figuring out how we would bike across the country if I had an arm needing constant attention. Perhaps I could bring our masseuse? She might be up for a road trip across the country!
The doctor yesterday openly admitted that medical professionals underestimate quality of life issues. I, of course, always a smart mouth, replied, "yes, but you have to be alive to have quality of life issues." He laughed and agreed and repeated what he had said earlier, women who get only chemo have a higher morbidity rate with recurrence.
What this doesn't address is the uniqueness of cancer, even breast cancer. No one can ever say which cancers will reoccur. So, how far do you go to avoid the risk of recurrence? Do you compromise your quality of life for the next 30 years to ensure that you have the lowest possible risk of recurrence? And even with that, if I have a really unique strain might it not come back anyway? No one is willing to really say what my current risk for recurrence is, but I think it is somewhere in the 5-10% range.
There is no research study that shows one way or the other. In the limited studies they do have (done in Europe and Canada 10 years ago where the surgery was probably not as good as mine) more women who got chemo and radiation vs. chemo alone lived. So I fall in the 50/50 bucket. If Dr. S had a randomized trial he said he would put me in it. He tried to run a trial like this a few years and couldn't get enough people with the right characteristics to enroll so it closed and we don't know the answers.
I am much more scared of radiation than chemo. Dr. S advised to take my actual pathology slides to another institution and get a second opinion on the pathology and the radiation oncology suggestion. He suggested the only other true breast cancer radiation oncology specialist in Chicago at Rush. I have time, I just need to see her before my last cycle of chemo begins March 15th.
To have something to look forward to, Ken and I booked a long weekend for our family in Scottsdale in mid-February (after 1/2 the chemo is done). We got a great offer for a room by email (the one I had been fantasizing about). Just a few days in the sun. I'm looking forward.
Thursday, January 7, 2010
Radiation Oncology-another specialist
The breast conference at Northwestern (which is a team of all the different cancer treatment professionals, surgical oncologists, oncologists, radiation oncologists and maybe someone else I am missing). anyway, they came back and suggested that I meet with their radiation oncologist. I am not sure why I am seeing him. Ken and I joked, perhaps he needs to redo the porch on his summer home.
I asked the nurse who called me with the news, why do I need to see the radiation oncologist? She said because you are so young. Not too sure what that means. Then I asked what was left to radiate? I mean they took off both breasts, right? She said there is still some tissue there, they can never get it all. She suggested I needed to see the radiation oncologist before I started chemo. I was devastated. I had just scheduled to start Monday and was feeling like I was getting on with my life. Such as it is right now anyway.
So for the last 48 hours I have played phone tag with nurses to get the radiation oncologist to see me. They have all been very pleasant but I feel like I have been playing a bit of the old kids game "telephone." Leondra tells me one thing from Dr. B, she says she will call Chris the other doctor's nurse to try to get me in quickly. No call back the next day. So I call Chris and ask if she has heard from Leondra? But Chris is another doctor's nurse and she doesn't know what is going on. So then I get to the right nurse, Rita. And she doesn't know what is going on. She says she will talk to Dr. S first thing Thursday. Wouldn't you think these brilliant folks would coordinate this better? I mean Dr. B talked to Dr. S on Monday at the breast conference and Dr. S. agreed to see me. And supposedly they agreed on the terms or the urgency, you would think. And Leondra called me Tuesday evening. Couldn't Dr. S have told his nurse, call Michele, get her in sometime this week. But no, it goes from Dr. B to his nurse to me, to my calling Dr. H's nurse to her calling the other nurse to her talking to Dr. S. No wonder everyone is confused! It is confusing.
All this time I am sweating about changing the chemo dates/times for the next three months. I have looked at the schedule and started to internalize it. These are the weeks I'll be better able to work. These other weeks are the weeks I'm likely to be sickest. I have scheduled a couple of visits with clients and team members around these dates. I have looked at President's Day weekend and fantasized about going away with Ken and Adam. I wait.
Then Thursday I get a call back from Leondra, she was sick Wednesday. Ok, no problem. Then she tells me that she spoke to Dr. B further. I should go ahead and start the chemo even if the doctor can't see before. Lucky me, they can do chemo and radiation at the same time if they need to. Just what my body needs. In addition, I can see any of the three radiation oncology doctors if I want. I would rather see the one who heard about my case and discussed it already. Even if it means I have to wait.
I sit back and fifteen minutes later the phone rings. It is Dr. S's nurse, they don't expect me to come out in the blinding snow storm today. He will take some time from his research day on Friday to see me. Thankfully.
So we will see what this brings.
I asked the nurse who called me with the news, why do I need to see the radiation oncologist? She said because you are so young. Not too sure what that means. Then I asked what was left to radiate? I mean they took off both breasts, right? She said there is still some tissue there, they can never get it all. She suggested I needed to see the radiation oncologist before I started chemo. I was devastated. I had just scheduled to start Monday and was feeling like I was getting on with my life. Such as it is right now anyway.
So for the last 48 hours I have played phone tag with nurses to get the radiation oncologist to see me. They have all been very pleasant but I feel like I have been playing a bit of the old kids game "telephone." Leondra tells me one thing from Dr. B, she says she will call Chris the other doctor's nurse to try to get me in quickly. No call back the next day. So I call Chris and ask if she has heard from Leondra? But Chris is another doctor's nurse and she doesn't know what is going on. So then I get to the right nurse, Rita. And she doesn't know what is going on. She says she will talk to Dr. S first thing Thursday. Wouldn't you think these brilliant folks would coordinate this better? I mean Dr. B talked to Dr. S on Monday at the breast conference and Dr. S. agreed to see me. And supposedly they agreed on the terms or the urgency, you would think. And Leondra called me Tuesday evening. Couldn't Dr. S have told his nurse, call Michele, get her in sometime this week. But no, it goes from Dr. B to his nurse to me, to my calling Dr. H's nurse to her calling the other nurse to her talking to Dr. S. No wonder everyone is confused! It is confusing.
All this time I am sweating about changing the chemo dates/times for the next three months. I have looked at the schedule and started to internalize it. These are the weeks I'll be better able to work. These other weeks are the weeks I'm likely to be sickest. I have scheduled a couple of visits with clients and team members around these dates. I have looked at President's Day weekend and fantasized about going away with Ken and Adam. I wait.
Then Thursday I get a call back from Leondra, she was sick Wednesday. Ok, no problem. Then she tells me that she spoke to Dr. B further. I should go ahead and start the chemo even if the doctor can't see before. Lucky me, they can do chemo and radiation at the same time if they need to. Just what my body needs. In addition, I can see any of the three radiation oncology doctors if I want. I would rather see the one who heard about my case and discussed it already. Even if it means I have to wait.
I sit back and fifteen minutes later the phone rings. It is Dr. S's nurse, they don't expect me to come out in the blinding snow storm today. He will take some time from his research day on Friday to see me. Thankfully.
So we will see what this brings.
Tuesday, January 5, 2010
Second Opinion Done
Today Ken and I went to meet with the breast cancer oncology specialist, Dr. Merkel of Northshore University Health System for a second opinion. I was shocked when I saw him standing in the hall, I'd been told he had 20 years experience but he looked 30, maybe not even. When he came into the room with Ken and I, I tried to be direct and summarize my case quickly to get three questions answered.
The quick history I gave him: I am a 47 year old woman with a family history of breast cancer. Healthy, physically active, I had a bilateral mastectomy after I was found to have Ductal Carcinoma in Situ, and an invasive ductal carcinoma tumor of less than 1 cm in my right breast. After surgery the pathology showed that I was node positive with a micrometastisis in one lymph node (according to the doctor today that happens in less than 5% of the cases with a tumor this size). I am estrogen receptor positive. BRCA negative (which is a genetic breast cancer test)
I have Stage 2 breast cancer. In addition, while undergoing surgery, I was found to have additional cancer in my left breast (a different ductal invasive mass of 4 mm unrelated in pathology to the first mass) and Lobular Carcinoma in Situ in my left breast. So I don't have "large" tumors but I have 2 primary sites and a bunch of other cancer cells.
I was advised by the team at Northwestern to have 12 weeks of chemotherapy. Four - three week cycles of Taxotere and Cytoxan. Commonly called T and C. To be followed by Tamoxofin for five years. This is under review at their breast conference meeting but this is NMH's suggestion so far.
I wanted to know three things for my second opinion:
1) Is the T and C treatment option that my doctor reccomended the best option for my particular case?
2) Is the suggested number of chemo treatments the appropriate number?
3) Would he suggest additional lymph nodes be removed?
Dr. Merkel was great. He listened eagerly. Spoke highly of both my surgeons and their work. After reviewing the pathology report, a physical, and history, he reviewed the details of several of the latest studies that impacted my case and said he would suggest the same treatment that the Northwestern team prescribed.
He also reviewed studies about Tamoxofin and made suggestions for how to handle some side effects. He spent 45 minutes with us and made me feel more confident about my choice.
I came home and took a nap.
I spoke with the head oncology coordinator at Northwestern later in the day and told her about Dr. Merkel. She said she was happy that I got a second opinion. She said that it always concerned her when people didn't take the time they would research to buy a car to pick their doctor and review their care.
So, this is one more step completed in the process. There are a couple of more this week. I will get the results of the breast conference review at Northwestern to see if all the doctors when they meet have additional suggestions. I will then schedule chemotherapy to begin if they give the ok.
I'll let you know.
The quick history I gave him: I am a 47 year old woman with a family history of breast cancer. Healthy, physically active, I had a bilateral mastectomy after I was found to have Ductal Carcinoma in Situ, and an invasive ductal carcinoma tumor of less than 1 cm in my right breast. After surgery the pathology showed that I was node positive with a micrometastisis in one lymph node (according to the doctor today that happens in less than 5% of the cases with a tumor this size). I am estrogen receptor positive. BRCA negative (which is a genetic breast cancer test)
I have Stage 2 breast cancer. In addition, while undergoing surgery, I was found to have additional cancer in my left breast (a different ductal invasive mass of 4 mm unrelated in pathology to the first mass) and Lobular Carcinoma in Situ in my left breast. So I don't have "large" tumors but I have 2 primary sites and a bunch of other cancer cells.
I was advised by the team at Northwestern to have 12 weeks of chemotherapy. Four - three week cycles of Taxotere and Cytoxan. Commonly called T and C. To be followed by Tamoxofin for five years. This is under review at their breast conference meeting but this is NMH's suggestion so far.
I wanted to know three things for my second opinion:
1) Is the T and C treatment option that my doctor reccomended the best option for my particular case?
2) Is the suggested number of chemo treatments the appropriate number?
3) Would he suggest additional lymph nodes be removed?
Dr. Merkel was great. He listened eagerly. Spoke highly of both my surgeons and their work. After reviewing the pathology report, a physical, and history, he reviewed the details of several of the latest studies that impacted my case and said he would suggest the same treatment that the Northwestern team prescribed.
He also reviewed studies about Tamoxofin and made suggestions for how to handle some side effects. He spent 45 minutes with us and made me feel more confident about my choice.
I came home and took a nap.
I spoke with the head oncology coordinator at Northwestern later in the day and told her about Dr. Merkel. She said she was happy that I got a second opinion. She said that it always concerned her when people didn't take the time they would research to buy a car to pick their doctor and review their care.
So, this is one more step completed in the process. There are a couple of more this week. I will get the results of the breast conference review at Northwestern to see if all the doctors when they meet have additional suggestions. I will then schedule chemotherapy to begin if they give the ok.
I'll let you know.
Sunday, January 3, 2010
Narcotic Free New Year
I made a New Years resolution to myself that I wasn't sure I could keep. I hadn't said it out loud because I was prepared to cut myself some slack if I couldn't keep it.
I wanted a drug free new year. My upcoming year is going to be filled with drugs. Chemo drugs, steroids (to reduce the reaction to the chemo drugs), anti-nauseous medications, shots if my white blood count goes too low, and the ever so attractive laxatives as the drugs (surprise, surprise) mess up your digestion. Cortisone cream if my skin gets itchy from the drugs. Neosporin for the nasal sores. And the threat of more pain killers for bone pain.
So New Years Eve I took one Vicodin before bed and then I stopped. And I waited. It is Day three and I haven't had to take any. I tried to not even take an Advil but I took one a day and one before bed to keep the pain to a dull roar. Day 2 I felt good enough that I went upstairs and walked on the treadmill for a mile. Day 3, a mile and a 1/2. Forty-five minutes of physical therapy and yoga-light each day to improve my range of motion after the walking and then a nap.
Interestingly the level of pain is about the same perhaps just more specific. I can feel particular muscles that hurt more. Or I can not feel a particular part of my back where nerves were cut. But the overall level of pain is the same and I feel clearer.
I don't feel stupid. I think pain meds make you groggy and there are many things you can't remember. Conversations were tougher. I think back and feel like that many thoughts or words were just outside my grasp of consciousness. It is hard to have clarity of thought through the medication.
I am more optimistic without the pain meds. I was able to spend some time on the internet researching chemo treatment options and protocols. Most importantly I have been buying lots of hats, scarves and even sleep caps. I will lose my hair 14-15 days after my first treatment. I've even bought a cap to wear under my bike helmet.
I'm all set at the first sign of hair loss to have my head shaved. My hairdresser and friend, Kevin, has even promised a home visit for the special shearing. I'm debating about taking pictures of the event. I'll let you know.
I wanted a drug free new year. My upcoming year is going to be filled with drugs. Chemo drugs, steroids (to reduce the reaction to the chemo drugs), anti-nauseous medications, shots if my white blood count goes too low, and the ever so attractive laxatives as the drugs (surprise, surprise) mess up your digestion. Cortisone cream if my skin gets itchy from the drugs. Neosporin for the nasal sores. And the threat of more pain killers for bone pain.
So New Years Eve I took one Vicodin before bed and then I stopped. And I waited. It is Day three and I haven't had to take any. I tried to not even take an Advil but I took one a day and one before bed to keep the pain to a dull roar. Day 2 I felt good enough that I went upstairs and walked on the treadmill for a mile. Day 3, a mile and a 1/2. Forty-five minutes of physical therapy and yoga-light each day to improve my range of motion after the walking and then a nap.
Interestingly the level of pain is about the same perhaps just more specific. I can feel particular muscles that hurt more. Or I can not feel a particular part of my back where nerves were cut. But the overall level of pain is the same and I feel clearer.
I don't feel stupid. I think pain meds make you groggy and there are many things you can't remember. Conversations were tougher. I think back and feel like that many thoughts or words were just outside my grasp of consciousness. It is hard to have clarity of thought through the medication.
I am more optimistic without the pain meds. I was able to spend some time on the internet researching chemo treatment options and protocols. Most importantly I have been buying lots of hats, scarves and even sleep caps. I will lose my hair 14-15 days after my first treatment. I've even bought a cap to wear under my bike helmet.
I'm all set at the first sign of hair loss to have my head shaved. My hairdresser and friend, Kevin, has even promised a home visit for the special shearing. I'm debating about taking pictures of the event. I'll let you know.
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