Every day, I notice shifts in my abilities. When I first was standing on my left (prosthetic) leg, I felt like I was leaning far to the left, even when the mirror and therapist told me that I was standing straight. Now, I still feel like I am leaning, but much less so. My brain is resetting what it perceives as straight. All my months of heavily using my right leg had shifted my perception that straight to the right.
Today, I stood on my left leg with my right foot on a ball without holding on with my hands. I also did a lot of walking. I practiced getting in and out of a car. I can walk while continuously moving the walker, which means that I am not leaning on it heavily. Yay!
I am getting 3 hours of therapy a day. I have been here for 9 days. I will be here 6 to 13 more days. I hope I get to leave walking on my cane.
Tuesday, April 30, 2013
Sunday, April 28, 2013
Cancer is like college
Sometimes when I tell people about my experiences with cancer, they pity me. They sigh and shake their heads. They seem to think that it was all so terrible.
I don't really find it that way. It's just something that I am dealing with right now. Having cancer is like being in college. It's expensive, but I learn from experts in their fields. There are lots of tests. Roommates (in the hospital) are randomly assigned. I meet other people going through the same process as I am. There are relaxed times and stressful times. Many other people provide support: financially, emotionally, with training and explanations, and recreationally. My liver has to work harder. There's some uncertainty about how things will be when it's over.
I feel like I read some study on happiness which questioned people about their happiness and followed up with them after some had won lotteries and some had experienced bad medical news. People were about as happy a year after winning the lottery as they were before winning it. People were also about as happy a year following diagnosis as they were beforehand. Having cancer doesn't change any of the little things that make my happiness. I still have wonderful friends and family, a lovely cat, music, art, movies, going outside, eating certain foods, and every thing else.
I don't really find it that way. It's just something that I am dealing with right now. Having cancer is like being in college. It's expensive, but I learn from experts in their fields. There are lots of tests. Roommates (in the hospital) are randomly assigned. I meet other people going through the same process as I am. There are relaxed times and stressful times. Many other people provide support: financially, emotionally, with training and explanations, and recreationally. My liver has to work harder. There's some uncertainty about how things will be when it's over.
I feel like I read some study on happiness which questioned people about their happiness and followed up with them after some had won lotteries and some had experienced bad medical news. People were about as happy a year after winning the lottery as they were before winning it. People were also about as happy a year following diagnosis as they were beforehand. Having cancer doesn't change any of the little things that make my happiness. I still have wonderful friends and family, a lovely cat, music, art, movies, going outside, eating certain foods, and every thing else.
Saturday, April 27, 2013
Doxil #3, and walking
Yesterday, Magee sent me to chemo in an ambulance with a very kind elderly man as my escort. He told me about his chemo experiences and his certainty that I would be getting better soon. As we waited, he talked about growing up in Philly.
Nurse Jamie accessed my port and took blood. It turned out that my white blood count was low. It was 2.2 and should be at least 5. I waited almost 2 hours before Dr. Rubin told the nurses that I could have chemo, just a smaller amount than usual. Chemo was pretty ordinary. Then, I met with Dr. Rubin. I told her that I have still been coughing up blood.
I asked about the genetic testing that she did when I was in the hospital in December. It turns out I have Li-Fraumeni Syndrome
which basically means that I am prone to developing cancer. Well, duh! Only about 400 people in the United States have this disorder, according to the National Institute of Health. Approximately 100% of women with the disorder develop cancer over their lifetimes. People with it are prone to developing adrenal corticocarcinoma, sarcomas, breast cancer, and leukemia. I have had 3 of those. That's enough for me. It can run in families, though I don't have the typical constellation of family members who have fought cancer. If you are related to me, you may want to get tested, though it is likely that the syndrome is a random genetic mutation for me. I plan to go to Dana- Farber Hospital in Boston when I am more mobile to be seen by specialists.
After treatment, I practiced walking with my physical therapist and my occupational therapist. I also practiced today. This afternoon, I found that I could continuously move the walker as I walked. This morning, I had to pause the walker every time I stepped with my prosthetic foot. I feel so proud of this improvement. I also walked between the parallel bars while holding on to the rail with only one hand. These skills were hard won. I thought walking would be easier, but I might be here for another week. I can't wait to see what I will be able to do next Friday. My occupational therapist said that only about 30% of above-the-knee amputees use their prostheses a year after receiving them, but that he had every confidence that I would adjust to mine well. It might take me a year or so before using it becomes instinctive.
Nurse Jamie accessed my port and took blood. It turned out that my white blood count was low. It was 2.2 and should be at least 5. I waited almost 2 hours before Dr. Rubin told the nurses that I could have chemo, just a smaller amount than usual. Chemo was pretty ordinary. Then, I met with Dr. Rubin. I told her that I have still been coughing up blood.
I asked about the genetic testing that she did when I was in the hospital in December. It turns out I have Li-Fraumeni Syndrome
which basically means that I am prone to developing cancer. Well, duh! Only about 400 people in the United States have this disorder, according to the National Institute of Health. Approximately 100% of women with the disorder develop cancer over their lifetimes. People with it are prone to developing adrenal corticocarcinoma, sarcomas, breast cancer, and leukemia. I have had 3 of those. That's enough for me. It can run in families, though I don't have the typical constellation of family members who have fought cancer. If you are related to me, you may want to get tested, though it is likely that the syndrome is a random genetic mutation for me. I plan to go to Dana- Farber Hospital in Boston when I am more mobile to be seen by specialists.
After treatment, I practiced walking with my physical therapist and my occupational therapist. I also practiced today. This afternoon, I found that I could continuously move the walker as I walked. This morning, I had to pause the walker every time I stepped with my prosthetic foot. I feel so proud of this improvement. I also walked between the parallel bars while holding on to the rail with only one hand. These skills were hard won. I thought walking would be easier, but I might be here for another week. I can't wait to see what I will be able to do next Friday. My occupational therapist said that only about 30% of above-the-knee amputees use their prostheses a year after receiving them, but that he had every confidence that I would adjust to mine well. It might take me a year or so before using it becomes instinctive.
Wednesday, April 24, 2013
Me walking
Ken took a video of me walking about a month ago, before I had any training. I am trying to get it up for you to watch. It's exciting.
I am even better at walking now. Today I practiced for about 2 hours with my occupational therapist and my physical therapist. I also practiced shifting my weight to my left leg, sitting, going from standing to sitting and from sitting to standing.
It is so strange to think about the movements of walking when I have done it most of my life without thought. There are so many things to remember: pushing my butt over my left leg, squaring my hips forward, shifting my weight before taking a step, marching my left leg forward, holding my head up, and pulling my shoulders back. I feel like I am learning some complicated dance. It's astounding that it's just ordinary walking that my 3 year old niece does just about as well as my great aunts. Some day, I will be able to do it without concentrating so much. Maybe I will be able to walk across the room, without holding on to anything, in the next month or so. I can't wait.
I am even better at walking now. Today I practiced for about 2 hours with my occupational therapist and my physical therapist. I also practiced shifting my weight to my left leg, sitting, going from standing to sitting and from sitting to standing.
It is so strange to think about the movements of walking when I have done it most of my life without thought. There are so many things to remember: pushing my butt over my left leg, squaring my hips forward, shifting my weight before taking a step, marching my left leg forward, holding my head up, and pulling my shoulders back. I feel like I am learning some complicated dance. It's astounding that it's just ordinary walking that my 3 year old niece does just about as well as my great aunts. Some day, I will be able to do it without concentrating so much. Maybe I will be able to walk across the room, without holding on to anything, in the next month or so. I can't wait.
Tuesday, April 23, 2013
Day 1 of prosthesis training
Yesterday, I arrived at Magee and answered a million questions by doctors, nurses, a social worker, nursing assistants, and other staff. I had to stay in bed all day.
Today, my occupational therapist, Katie, tested my ability to wash and dress myself. We had trouble getting my leg to lock on. I had not had much trouble when I practiced at home, but it was being tricky. I had physical therapy and my leg popped out of the prosthesis a few times after walking for a little bit. It wasn't clear if it hadn't locked in the first place or if it was unlocking. My prosthesist came to check on it and cut down the release button, in case it was getting bumped.
I got to walk today in the parallel bars. It was exciting. It's a little tricky figuring out how to move my hips. I am a little rusty at walking. It has been over a year since I could walk without a limp.
Wednesday, April 17, 2013
Last Radiation
Today was my last radiation, at least for this round. Hooray!
Ken dropped me off this morning and I hung out with my radiation buddy, Sharon, in the waiting room. Radiation itself was pretty quick. The therapists and I hugged at the end. They are all so nice, but I hope that I don't have radiation ever again.
I saw Dr. Troika and Dr. Komarnicky. They said that I should call if the bleeding gets worse. Then I will get another bronchoscopy and probably radiation on my left lung. Let's hope that the bleeding stops again and my cough goes away.
When I started to leave the office, a staff member congratulated me on finishing radiation and suggested that I ring the bell mounted on the wall. She said it was to celebrate the end of radiation, but that no one had ever rang it before. I got up, crutched over to it, and rang the bell. The doctors and nurses all cheered and whooped for me. Yay!
I took a nap when I got home. Then I called Magee to let them know I was done with radiation. The admissions counselor said I was set to go for Monday. I am thrilled. I can hardly wait to learn to walk.
Friday, April 12, 2013
Must be a good day
Ken dropped me off at radiation this morning. After my treatment, I saw the doctors who said that we won't know whether radiation makes my right lung stop bleeding because my left lung is also bleeding. I had thought of that yesterday night. It was kind of funny that the doctors brought it up.
I took the bus home. It was exciting! I haven't been on the bus since last summer. The walk home from the bus stop was tiring and I needed along nap when I got in
I crutched to the coffee shop and, from there, to my friend's shop. It was an exceptionally hot day. I heard that it hit 88 degrees. I crutched home and am wearing my leg. I haven't coughed up any blood today, so it must be a good day. Plus I got to walk a lot today.
Monday, April 8, 2013
Phantom pain, referred pain, and pain in my ass
I was released from the hospital on Saturday with instructions to set up appointments for radiation. Doctors expected that I would have between 5 and 15 radiation sessions. I am disappointed that I might not get to Magee for 3 weeks. Yesterday, I practiced walking with my prosthesis with the knee bending. These days, nothing cheers me up more than walking. I surprised Mom and Athena by walking to greet them. I still need to balance heavily on the walker when I move my right leg, but I know I will get better at trusting my left leg to hold me up. Maybe, by the time I get to Magee I will be pretty good at walking and I won't have to stay long.
The more I walk, the more phantom pains I have that night. It's hard to describe phantom pain. I sometimes feel a jolt of sharp pain where my left knee used to be. Sometimes, my missing foot or calf cramps up. Usually these intense sensations last for less than a minute. Most of the time, I feel a sensation like my left foot is asleep. When I wake up, my left knee often is painful. The first 3 months of my amputation, I woke up trying to rub my sore knee and had to re-learn about its being gone several times a week. Now, I think the soreness is coming from the end of my little leg, but it's a few inches beyond my body. It's weird and almost hallucinatory.
The pain in my left shoulder is likely referred pain from my left lung. Basically, the sensations from my lung go to the same part of my spinal cord as the sensations from my shoulder. My brain is more used to getting sensation information from my shoulder than my lung, so it perceives the pain as coming from my shoulder. It's annoying, but the pain has gotten better. The pain is worse when I cough or take a deep breath. It can be hard to find a comfortable way to lie down.
I have been coughing all weekend, but haven't coughed up blood until today. I have my list of questions for my oncologists, but the most important to me is finding a way to trust that the radiation won't make make my skin dissolve (which was both disgusting and painful). I want to know what makes this treatment ok for me, especially since my body is apparently good at making cancer cells and radiation carries a risk of causing cancer. I also want to know what precautions we are taking. I can't have an open wound on my chest for a month.
The more I walk, the more phantom pains I have that night. It's hard to describe phantom pain. I sometimes feel a jolt of sharp pain where my left knee used to be. Sometimes, my missing foot or calf cramps up. Usually these intense sensations last for less than a minute. Most of the time, I feel a sensation like my left foot is asleep. When I wake up, my left knee often is painful. The first 3 months of my amputation, I woke up trying to rub my sore knee and had to re-learn about its being gone several times a week. Now, I think the soreness is coming from the end of my little leg, but it's a few inches beyond my body. It's weird and almost hallucinatory.
The pain in my left shoulder is likely referred pain from my left lung. Basically, the sensations from my lung go to the same part of my spinal cord as the sensations from my shoulder. My brain is more used to getting sensation information from my shoulder than my lung, so it perceives the pain as coming from my shoulder. It's annoying, but the pain has gotten better. The pain is worse when I cough or take a deep breath. It can be hard to find a comfortable way to lie down.
I have been coughing all weekend, but haven't coughed up blood until today. I have my list of questions for my oncologists, but the most important to me is finding a way to trust that the radiation won't make make my skin dissolve (which was both disgusting and painful). I want to know what makes this treatment ok for me, especially since my body is apparently good at making cancer cells and radiation carries a risk of causing cancer. I also want to know what precautions we are taking. I can't have an open wound on my chest for a month.
Friday, April 5, 2013
Bronchoscopy and other fun things
Today, Ken drove me to the hospital at 6am for my bronchoscopy. I registered and crutched to the elevators to go to the 4th floor. The hospital was already buzzing with people. The nurses brought me back to the pre-procedure room quickly and started a heart monitor and an IV. I remember the nurse saying that she was injecting me with diazepam to make me sleepy. The next thing I remember is trying to stay asleep an hour or so later. Then, I was coughing a lot.
Dr. Rubin talked to me, but I was still groggy. She looked at the pile of bloody tissues on my lap and said that I had to stay I the hospital over the weekend. Other doctors explained that both of my lungs were bleeding, although my bronchial tubes were clear. My right lung is bleeding near the nodule; the doctors were pretty certain that the nodule caused the bleeding there. They weren't as sure of the cause of the bleeding in my left lung because it was beyond the range of the bronchoscope.
The doctors suggested radiation to the right lung might help the bleeding. The transportation team brought me directly to the radiation suite. I met Ken there and he helped calm my nerves. The radiation team gave me another CT scan and tattooed marks on my skin so that they could line me up in the exact same spot each time. After that, I waited with Ken for my turn in getting radiation. Finally, they wheeled me in and I lay on the table amid the green laser grid. The machine moved a few times and I focused on the music playing.
When I finished around 2pm, we came up to the 17th floor. Ken and I ate the sandwiches he brought. I was ravenous. More doctors visited me. A few said that I might be able to leave tomorrow after my second radiation if my hemoglobin levels are good. Dr. K., my radiation oncologist, will review my case on Monday and will decide whether I should have 10 or 15 radiation treatments. I am crossing my fingers to go home tomorrow. Either way, I will not be able to go to Magee to learn to walk with my prosthesis while I have outpatient radiation.
My roommate is an older woman who has been loudly talking on the phone almost the whole time I have been here. I know she is dealing with her illness and being in a hospital where she doesn't speak the language, but it's annoying. The room is too hot. I want to go home.
I am watching awful television about brides picking dresses for their weddings. I am enjoying watching the drama because their problems have solutions. It's gratifying to see the episodes end with everything happily resolved. Honestly, I am a little jealous.
Dr. Rubin talked to me, but I was still groggy. She looked at the pile of bloody tissues on my lap and said that I had to stay I the hospital over the weekend. Other doctors explained that both of my lungs were bleeding, although my bronchial tubes were clear. My right lung is bleeding near the nodule; the doctors were pretty certain that the nodule caused the bleeding there. They weren't as sure of the cause of the bleeding in my left lung because it was beyond the range of the bronchoscope.
The doctors suggested radiation to the right lung might help the bleeding. The transportation team brought me directly to the radiation suite. I met Ken there and he helped calm my nerves. The radiation team gave me another CT scan and tattooed marks on my skin so that they could line me up in the exact same spot each time. After that, I waited with Ken for my turn in getting radiation. Finally, they wheeled me in and I lay on the table amid the green laser grid. The machine moved a few times and I focused on the music playing.
When I finished around 2pm, we came up to the 17th floor. Ken and I ate the sandwiches he brought. I was ravenous. More doctors visited me. A few said that I might be able to leave tomorrow after my second radiation if my hemoglobin levels are good. Dr. K., my radiation oncologist, will review my case on Monday and will decide whether I should have 10 or 15 radiation treatments. I am crossing my fingers to go home tomorrow. Either way, I will not be able to go to Magee to learn to walk with my prosthesis while I have outpatient radiation.
My roommate is an older woman who has been loudly talking on the phone almost the whole time I have been here. I know she is dealing with her illness and being in a hospital where she doesn't speak the language, but it's annoying. The room is too hot. I want to go home.
I am watching awful television about brides picking dresses for their weddings. I am enjoying watching the drama because their problems have solutions. It's gratifying to see the episodes end with everything happily resolved. Honestly, I am a little jealous.
Thursday, April 4, 2013
Lung nodule sizes
I went to the chemo office today to get my dose of Herceptin. The infusion only took a half hour. I don't think I had ever been done in the chemo room so quickly. Afterwards, I saw Dr. Rubin to discuss my coughing up blood. She explained that there is fluid in the upper left part of my lung. She said that the tumor could be pressing against a bronchial branch causing it to be irritated and bloody.
I got the CT report from when I was in the hospital last week. There are 3 nodules in my lungs. In the upper right lung, there is a nodule about the size of a chocolate chip (10mm). It had been 8mm, the size of a pea, back in October. Another nodule that was 8mm back in October is now 22mm, about the size of an olive. In the left lung, a nodule that was 12mm has grown to 20mm, about the size of a cherry. I am glad to know where the nodules are and what their relative sizes are, but I didn't think that one nearly tripled in size.
My bronchoscopy is scheduled for tomorrow. Dr. Rubin said that I might need to stay overnight to get possible radiation to stop the bleeding. She also said that it was likely that I would get a biopsy done at the same time.
I got the CT report from when I was in the hospital last week. There are 3 nodules in my lungs. In the upper right lung, there is a nodule about the size of a chocolate chip (10mm). It had been 8mm, the size of a pea, back in October. Another nodule that was 8mm back in October is now 22mm, about the size of an olive. In the left lung, a nodule that was 12mm has grown to 20mm, about the size of a cherry. I am glad to know where the nodules are and what their relative sizes are, but I didn't think that one nearly tripled in size.
My bronchoscopy is scheduled for tomorrow. Dr. Rubin said that I might need to stay overnight to get possible radiation to stop the bleeding. She also said that it was likely that I would get a biopsy done at the same time.
Tuesday, April 2, 2013
Not getting things done
Today has been frustrating. I have put in lots of effort, but haven't been able to get anything done.
This morning, I asked my friend to meet me so that I would have company for my bronchoscope. She wasn't at my apartment by the time I had to leave, so I took a cab by myself to the hospital. She texted me that she had overslept. I checked into admissions and headed up to the 4th floor. When the office started to check me in, the nurse asked whether I had eaten anything. I had. No one had told me not to eat. We had to reschedule the procedure for Friday morning. Before leaving, I told the doctor that I had coughed up more blood, about the size of an egg yolk. She said not to worry, that it made sense that I might be coughing up blood.
By the time I got back to the street, my friends were around the corner. We got coffee and I finally picked up my mail.
I headed out to the pharmacy to get my prescription for cough syrup filled. It was a little long of a walk for me. The pharmacists said that they were out and I would have to come back later.
I am resting up to get enough energy to shower.
This morning, I asked my friend to meet me so that I would have company for my bronchoscope. She wasn't at my apartment by the time I had to leave, so I took a cab by myself to the hospital. She texted me that she had overslept. I checked into admissions and headed up to the 4th floor. When the office started to check me in, the nurse asked whether I had eaten anything. I had. No one had told me not to eat. We had to reschedule the procedure for Friday morning. Before leaving, I told the doctor that I had coughed up more blood, about the size of an egg yolk. She said not to worry, that it made sense that I might be coughing up blood.
By the time I got back to the street, my friends were around the corner. We got coffee and I finally picked up my mail.
I headed out to the pharmacy to get my prescription for cough syrup filled. It was a little long of a walk for me. The pharmacists said that they were out and I would have to come back later.
I am resting up to get enough energy to shower.
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