The hospital kept me overnight. Every doctor who examined me said that my lungs sounded clear and that my vitals were perfect. One of the residents explained that the ct scan showed a collection of fluid in the upper lobe of my left lung, which could be blood or related to coughing up blood. Of course it is on my left side. It's not been as trustworthy as my right side.
Next week, the lung specialist will do a bronchoscope, where he will send a camera into my lungs to look for causes for bleeding.
During my stay, nurses and nursing assistants visited me to find out how I have been since being discharged in December. A patient whose room was next to mine also stopped by to say hi. It was nice to see everyone.
Ken and I left the hospital and then drove to Wildwood to have Easter with his family. I am so glad to not spend another holiday in the hospital.
Saturday, March 30, 2013
Thursday, March 28, 2013
Heading to the hospital
I coughed up blood again today. The doctor said to go to the emergency room. I am going to pack snacks and head out in a bit. I hope it isn't scary.
Yesterday, I got to walk on my leg at home with Ken watching. I will post the video. It's so exciting. I hope I can practice more tonight and that the hospital sends me home.
I am exhausted, possibly from chemo. I really don't want to go to the hospital.
Yesterday, I got to walk on my leg at home with Ken watching. I will post the video. It's so exciting. I hope I can practice more tonight and that the hospital sends me home.
I am exhausted, possibly from chemo. I really don't want to go to the hospital.
Tuesday, March 26, 2013
Chemo #4, session 1 and my leg
I have been on at least 3 different chemo regimens in the last year. Today, I started a new one: Doxil, or Adriamycin. Nurse Sam gave me a two page list of side effects and what to do to minimize them. I am to avoid citrus, tomatoes, spicy food, hot beverages, hard or crunchy foods, and alcohol the day before chemo up to 5 days after chemo, which is a week. I am also encouraged to be super gentle to my skin. The information sheet recommended not rubbing the skin hard and avoiding sweeping, mopping, lawn mowing, washing dishes, typing, and other activities that involve heat or repetitive friction. Maybe because Adriamycin is also used to treat women with breast cancer, the list seemed oriented toward housework. Well, good thing my cleaning service is coming next week, unless I am back in the hospital.
Before I got chemo, I mentioned to Nurse Sam that over the weekend, I coughed up a blood clot bigger than a raisin and smaller than a cherry. (When I mentioned it to my mother, I said "bigger than a raisin and smaller than a cantaloupe" which wasn't as helpful.) Sam said that I had to see Dr. Rubin before treatment. I finished my novel while waiting for her. Dr. Rubin asked a lot of questions and thoroughly checked my lungs with her stethoscope. She said that the tumor in my lungs might be pressing against a blood vessel causing my lung to bleed. She also said that I needed to call right away if it happens again. I had been anxious when it happened, but I didn't think it was that much of an emergency because it was older clotted blood. Dr. Rubin said that a lung specialist might need to cauterize the tissue if it happens again. She also said that I could get chemo. Yay!
As I finished up chemo, Jeff the prosthetist texted me to say that he was on his way to Philly. I paid, put on my coat, and hailed a cab home. I had just enough time to eat a late lunch before Jeff arrived bearing my awesome leg. He glued the pins in place on both my liners and suggested that I practice putting on the leg and standing for a few minutes at a time so that I will be used to it before going back to Magee. After my nap, I put the leg on and tried standing and shifting my weight between my my feet to get my little leg as far into the socket as it could go. I got the pin to lock in place, which means that my leg was all the way down in the socket. Yay!
It amuses me to look down and see one detachable robot leg and one attached human leg.
I am not supposed to walk on it alone, but I feel like I might take a few steps. I am a little concerned that standing, donning the leg and walking will involve exactly the sort of repetitive friction that the chemo warned me about. I will just have to be extra mindful about irritation on my leg. Walking is awesome, but skin integrity is necessary. I still have nightmares occasionally about my skin dissolving, a completely painful and disgusting process.
Before I got chemo, I mentioned to Nurse Sam that over the weekend, I coughed up a blood clot bigger than a raisin and smaller than a cherry. (When I mentioned it to my mother, I said "bigger than a raisin and smaller than a cantaloupe" which wasn't as helpful.) Sam said that I had to see Dr. Rubin before treatment. I finished my novel while waiting for her. Dr. Rubin asked a lot of questions and thoroughly checked my lungs with her stethoscope. She said that the tumor in my lungs might be pressing against a blood vessel causing my lung to bleed. She also said that I needed to call right away if it happens again. I had been anxious when it happened, but I didn't think it was that much of an emergency because it was older clotted blood. Dr. Rubin said that a lung specialist might need to cauterize the tissue if it happens again. She also said that I could get chemo. Yay!
As I finished up chemo, Jeff the prosthetist texted me to say that he was on his way to Philly. I paid, put on my coat, and hailed a cab home. I had just enough time to eat a late lunch before Jeff arrived bearing my awesome leg. He glued the pins in place on both my liners and suggested that I practice putting on the leg and standing for a few minutes at a time so that I will be used to it before going back to Magee. After my nap, I put the leg on and tried standing and shifting my weight between my my feet to get my little leg as far into the socket as it could go. I got the pin to lock in place, which means that my leg was all the way down in the socket. Yay!
It amuses me to look down and see one detachable robot leg and one attached human leg.
I am not supposed to walk on it alone, but I feel like I might take a few steps. I am a little concerned that standing, donning the leg and walking will involve exactly the sort of repetitive friction that the chemo warned me about. I will just have to be extra mindful about irritation on my leg. Walking is awesome, but skin integrity is necessary. I still have nightmares occasionally about my skin dissolving, a completely painful and disgusting process.
Sunday, March 24, 2013
Birthday weekend
I have had so much fun celebrating my birthday this year. I went to dinner with Ken on Thursday night at Will, a BYOB across the street from my apartment. It was delicious. I had a hen of the woods mushroom as my appetizer and Ken had foie gras. Then he had short rib for dinner and I ate monkfish with monkfish liver. We drank wine that Athena gave me to celebrate my last chemo for breast cancer. I think it was one of our first dates in a long while.
On Friday, Hollace came by with beautiful flowers and cupcakes. She massaged my sore shoulder. Then we got sandwiches for lunch. Later, I had drinks with Ken and Rich at a bar across the street from my apartment. I was a little worried about getting drunk and not being able to use my crutches, but I was fine.
Yesterday, I went back to Adobe and had dinner and margaritas with friends from grad school, my old roommates, and our old neighbor, Antoine. Antoine massaged the knot out of my shoulder. We had cupcakes and ice cream cake and tried to guess what the karaoke singers in the next room looked like based on their voices and song choices. We didn't leave until well after midnight; it was my latest night out in probably a year. My friends walked me back into my home and remarked on how well I got up the stairs.
Today, I had brunch with Monica at the coffeeshop up the street. We finally caught up on each other's lives after the last few months. I enjoyed coffee for the first time in months. Then my parents and youngest siblings visited me. We went out to an incredible dinner. We passed each other our plates so that everyone got to try everything. There was lasagna, pesto fettuccini with shrimp, braesola, lamb shanks, and sweet potato gnocchi. Desserts were tiramisu, raspberry cake, and wedding cake. I enjoyed my family's company.
I enjoyed eating this weekend so much more than I typically do. I think the break from chemo helped make the weekend more enjoyable. I am thrilled to learn to walk again. I can't wait. I will find out soon when my stay at Magee will start.
On Friday, Hollace came by with beautiful flowers and cupcakes. She massaged my sore shoulder. Then we got sandwiches for lunch. Later, I had drinks with Ken and Rich at a bar across the street from my apartment. I was a little worried about getting drunk and not being able to use my crutches, but I was fine.
Yesterday, I went back to Adobe and had dinner and margaritas with friends from grad school, my old roommates, and our old neighbor, Antoine. Antoine massaged the knot out of my shoulder. We had cupcakes and ice cream cake and tried to guess what the karaoke singers in the next room looked like based on their voices and song choices. We didn't leave until well after midnight; it was my latest night out in probably a year. My friends walked me back into my home and remarked on how well I got up the stairs.
Today, I had brunch with Monica at the coffeeshop up the street. We finally caught up on each other's lives after the last few months. I enjoyed coffee for the first time in months. Then my parents and youngest siblings visited me. We went out to an incredible dinner. We passed each other our plates so that everyone got to try everything. There was lasagna, pesto fettuccini with shrimp, braesola, lamb shanks, and sweet potato gnocchi. Desserts were tiramisu, raspberry cake, and wedding cake. I enjoyed my family's company.
I enjoyed eating this weekend so much more than I typically do. I think the break from chemo helped make the weekend more enjoyable. I am thrilled to learn to walk again. I can't wait. I will find out soon when my stay at Magee will start.
Wednesday, March 20, 2013
Early birthday present
On Monday, Jeff, my prosthetist, came to my apartment so that we could test out the new leg. I picked it up for the first time and was surprised by how heavy it was. I walked with it from my living room through the kitchen and back while Jeff made adjustments. He left with the leg.
On Tuesday, Jeff and I met at Magee with Dr. Lax and my physical therapist. I practiced walking in front of everyone. People smiled encouragingly from other patient rooms as I walked with my prosthesis and my walker. I watched my feet on every step and was able to develop some regular walking rhythm, though I took tiny steps. I looked up for a few steps here and there. I felt amazing and so happy to be walking. Dr. Lax said that she will try to get me approved for staying at Magee for a week to learn to walk. It will be easier than traveling back and forth for rehab, though I will probably get bored in the hospital. Every day that I get to leave my apartment is a good day. Every day that I get to walk is amazing. My mood is considerably brighter than it was on the weekend.
I was a little sore when I woke up this morning and stretched for a while before getting up. I tried to call a cab to go to the chiropractor, but the dispatcher said that there were no taxis around me. I crutched two blocks to Broad Street. It is hard to hail a cab on crutches. It took a little practice to figure out how to balance. When the cab stopped, I realized that I hadn't opened a car door before by myself. I was proud getting myself I into and out of the cab. The chiropractor adjusted my neck which immediately relieved my shoulder ache. Then I had acupuncture on the shoulder to support its getting better. I hope the treatments help so that I can keep going for short walks.
On Tuesday, Jeff and I met at Magee with Dr. Lax and my physical therapist. I practiced walking in front of everyone. People smiled encouragingly from other patient rooms as I walked with my prosthesis and my walker. I watched my feet on every step and was able to develop some regular walking rhythm, though I took tiny steps. I looked up for a few steps here and there. I felt amazing and so happy to be walking. Dr. Lax said that she will try to get me approved for staying at Magee for a week to learn to walk. It will be easier than traveling back and forth for rehab, though I will probably get bored in the hospital. Every day that I get to leave my apartment is a good day. Every day that I get to walk is amazing. My mood is considerably brighter than it was on the weekend.
I was a little sore when I woke up this morning and stretched for a while before getting up. I tried to call a cab to go to the chiropractor, but the dispatcher said that there were no taxis around me. I crutched two blocks to Broad Street. It is hard to hail a cab on crutches. It took a little practice to figure out how to balance. When the cab stopped, I realized that I hadn't opened a car door before by myself. I was proud getting myself I into and out of the cab. The chiropractor adjusted my neck which immediately relieved my shoulder ache. Then I had acupuncture on the shoulder to support its getting better. I hope the treatments help so that I can keep going for short walks.
Sunday, March 17, 2013
Cat scan results
Bunky is snoring loudly as I write this entry.
On Friday, I felt so certain that I was cancer free that I was excited to get the news from the CT Scan. I tried to talk my way toward a more even view, but felt like I had treatment for sarcoma most weeks since November. I thought that there was no way this teensy bit of cancer could have survived all those tremendous chemicals.
Well, I was (mostly) wrong. Dr. Rubin explained that the cancer is bigger in some areas than it was in August. Some of it is smaller. Some of it disappeared. I feel pretty down about it. It may have grown when the focus was on the leg. It may have shrunk during chemo this year, but we don't know because we didn't scan it for eight months. Bummer. On the other hand, no cancer was seen anywhere else in my chest, abdomen, or pelvis. Fantastic. Chemo is getting changed up. It will be every other Friday, which might lead to more good days. The emotional roller coaster of having cancer has gotten old. I want to be well. I want to trust that my body isn't busy trying to kill me.
I have been cranky all weekend. I am in a wheelchair, trying to rest my left shoulder. I probably wrenched it when I fell off the barstool last week. I likely already had muscle strain from walking too much the week before. I am going to the chiropractor this week.
Luckily, my family visited and helped me deal with all these things. Yesterday, my parents visited with me and gave me some perspective on my health. My sisters and niece and nephew came down today. We had strawberry shortcake and watched Dumbo.
Thursday, March 14, 2013
CAT scan
On Tuesday, my friend Rich drove me to Methodist Hospital for my CAT scan. We got there around 1pm. Transportation gave me a huge wheelchair to use and I went up to the Radiology department. One of the technicians gave me two bottles of the gross tasting "milk shake" that would help the doctors see my insides better. After I drank it, we waited about an hour and a half to be taken back.
Everyone was very nice to me. The nurse asked if I could change into a gown by myself. The scan techs asked if I could move from the wheelchair to the bed by myself. The last time I was at that hospital I had both of my legs,but could barely walk. This time, I was pretty mobile, but had an obvious disability. The nurse was nice enough to use my port instead of injecting one of my veins in my arm. The test itself took just a few minutes.
Afterwards, I was super hungry because I had not eaten for the test. We drove to Lucky 13, in my neighborhood. I had a beer with my burger. They were both delightful. I was proud of myself for all of my walking and handling all of the steps well. I noticed my jacket had slid to the floor, so I turned on my bar stool and went to put my left leg down. I found myself lying on my back. I forgot that I didn't have a leg to stand on. I felt embarrassed and annoyed with myself for somehow forgetting that I didn't have a leg. Now, I feel glad that I had a moment where I could relax enough to forget my amputation. I didn't really get hurt, just a little bruised on my butt.
Yesterday, Hollace came over and gave me a massage. My left shoulder has been increasingly painful, making it hard to sleep. We had lunch together and went for a short walk. I had to turn around because my shoulder ached too much.
Today, I have been feeling even worse. I woke up because of a hacking cough and because my shoulder hurt. I have been trying heat and cold compresses, which help a little. I am also using my wheelchair today to ease the pressure on my shoulder.
Everyone was very nice to me. The nurse asked if I could change into a gown by myself. The scan techs asked if I could move from the wheelchair to the bed by myself. The last time I was at that hospital I had both of my legs,but could barely walk. This time, I was pretty mobile, but had an obvious disability. The nurse was nice enough to use my port instead of injecting one of my veins in my arm. The test itself took just a few minutes.
Afterwards, I was super hungry because I had not eaten for the test. We drove to Lucky 13, in my neighborhood. I had a beer with my burger. They were both delightful. I was proud of myself for all of my walking and handling all of the steps well. I noticed my jacket had slid to the floor, so I turned on my bar stool and went to put my left leg down. I found myself lying on my back. I forgot that I didn't have a leg to stand on. I felt embarrassed and annoyed with myself for somehow forgetting that I didn't have a leg. Now, I feel glad that I had a moment where I could relax enough to forget my amputation. I didn't really get hurt, just a little bruised on my butt.
Yesterday, Hollace came over and gave me a massage. My left shoulder has been increasingly painful, making it hard to sleep. We had lunch together and went for a short walk. I had to turn around because my shoulder ached too much.
Today, I have been feeling even worse. I woke up because of a hacking cough and because my shoulder hurt. I have been trying heat and cold compresses, which help a little. I am also using my wheelchair today to ease the pressure on my shoulder.
Friday, March 8, 2013
Chemo #10
I think that today was my tenth chemo this year. It was uneventful, but I got to show off pictures of myself standing and walking from the other day. Today I stayed awake the whole time. I am recovering at Ken's house with Sour Patch Kids and television. It's awesome.
Yesterday, I hopped downstairs using my leg and the bannister. Then I walked up the street further than I have in about a year. I stopped at Harriet's lingerie shop to get a much-needed new bra. Then I walked to Nice Things and chatted with Elissa for a while. We walked back to my home, stopping at the cupcake shop and coffeeshop for some chai. Then I crutched back to my house. I have been a little sore since then, but feel good otherwise. I think all my crutching is going to make it easier for me to use my leg.
Yesterday, I hopped downstairs using my leg and the bannister. Then I walked up the street further than I have in about a year. I stopped at Harriet's lingerie shop to get a much-needed new bra. Then I walked to Nice Things and chatted with Elissa for a while. We walked back to my home, stopping at the cupcake shop and coffeeshop for some chai. Then I crutched back to my house. I have been a little sore since then, but feel good otherwise. I think all my crutching is going to make it easier for me to use my leg.
Wednesday, March 6, 2013
Two shoes
I spent this weekend visiting my family in North Jersey. There was a memorial service in church for all of my grandparents and some of my other relatives. I wore a shoe with a little heel and managed the steps beautifully. People were so excited to see me relatively healthy. It was good to visit with everyone.
Today I met my friends Mia and Nicole for lunch. We drove over to a Thai restaurant. It was really good to get out of my immediate neighborhood and to switch up my food a little but. We talked for a while over our soups. Then Mia drove me home. Right after we came inside, my prosthetist came over with a leg for me to try out.
I changed into shorts and gave Jeff a shoe to put on the prosthetic foot. Then I stood while Jeff put on the leg. He had to turn the socket as he pushed it up to my hip. I felt so excited to look down and see two feet.
Jeff guided me in moving my walker forward and taking a step forward with my left foot. I followed with my right. I slowly walked from my living room couch to the furthest wall of my kitchen. I turned around and came back. It was thrilling. Jeff showed me a switch on the back of the knee that I could turn so the knee would bend. I tried it and sat down on the couch. After a rest, I practiced walking again. It was hard to tell if my foot was touching the floor.
My hip muscles are still so tight that my left leg kept drifting up in front of me, unless I consciously tightened my butt muscles. Jeff said that he would shift the leg so that the foot was more underneath me instead of in front of me. The next step is to decide what I want the socket to look like. It could be made in different colors or with a favorite t-shirt. I have to think about it. Then I meet with Jeff again before going back to Dr. Lax. Exciting stuff!
Also, my CAT Scan was rescheduled for next week. I can't wait to find out whether I am cancer free.
Today I met my friends Mia and Nicole for lunch. We drove over to a Thai restaurant. It was really good to get out of my immediate neighborhood and to switch up my food a little but. We talked for a while over our soups. Then Mia drove me home. Right after we came inside, my prosthetist came over with a leg for me to try out.
I changed into shorts and gave Jeff a shoe to put on the prosthetic foot. Then I stood while Jeff put on the leg. He had to turn the socket as he pushed it up to my hip. I felt so excited to look down and see two feet.
Jeff guided me in moving my walker forward and taking a step forward with my left foot. I followed with my right. I slowly walked from my living room couch to the furthest wall of my kitchen. I turned around and came back. It was thrilling. Jeff showed me a switch on the back of the knee that I could turn so the knee would bend. I tried it and sat down on the couch. After a rest, I practiced walking again. It was hard to tell if my foot was touching the floor.
My hip muscles are still so tight that my left leg kept drifting up in front of me, unless I consciously tightened my butt muscles. Jeff said that he would shift the leg so that the foot was more underneath me instead of in front of me. The next step is to decide what I want the socket to look like. It could be made in different colors or with a favorite t-shirt. I have to think about it. Then I meet with Jeff again before going back to Dr. Lax. Exciting stuff!
Also, my CAT Scan was rescheduled for next week. I can't wait to find out whether I am cancer free.
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