I enjoyed visiting my family this weekend. Whenever I find myself in a new place, I realize how challenging it is for me to get around. I am pretty good at walking in my apartment, but I have lots of practice here. It is much harder to walk on carpeting and on unfamiliar areas. I got to show off walking with a cane to my family.
Today I had a CT scan of my chest, abdomen, and pelvis. Ken dropped me off with my walker and I followed the routine that I am way too familiar with: check into the hospital, go upstairs to Radiology, check in there, drink the disgusting milkshake, change, and get scanned. The staff greeted me like an old friend. I wore metal-free clothes, but had to change into a robe anyway. I went to the bathroom and had trouble with the seat. I ended up getting pee everywhere, which was equally hilarious and annoying. I thought that I mastered toilets, but somehow that one was extra tricky.
I should get the results tomorrow from Dr. Rubin. The radiologist gave me a phone number to call to ensure that my results were sent over as soon as they could be. I am a little nervous about it, even though being nervous won't change the results. Last time, I was convinced that Huey, Dewey, and Louie (the metastases in my lungs) were eliminated with all the chemo. I was badly disappointed for a few days afterward. Now, I am just hoping that they didn't grow since March and that no other tumors grew either. I have one wild hope that Louie (the littlest tumor) shrunk to oblivion. Hope is hard.
Thursday, May 30, 2013
Wednesday, May 22, 2013
Going lots of places
I have been busy getting around for the past week. Last week, I walked about .5 miles to my friend Elissa's store and back. It was my first solo excursion with my prosthesis. I felt so excited to go. I found that it was tricky to carry my walker down 22 steps to the sidewalk. I strapped it to my back using a belt and a luggage strap run through the walker supports and crisscrossed over my chest. I walked down the steps at a very slow rate and felt triumphant when I got to the bottom.I enjoyed seeing my neighbors and everyone enjoying the weather.
I also got myself to the Amputee Support Group. I painstakingly got down the steps and hailed a cab. The driver was amazing. He had me sit up front and he folded my walker for me and put it in the backseat. When we got to Magee, he had trouble opening the walker and oiled the hinges for me. He also stopped traffic in both lanes so that I didn't feel like I had to rush. At the meeting, I met the other amputees. We discussed going to a Phillies game. It should be fun!
My gorgeous genius cousin Stephanie is in town for medical conferences. We met up for dinner across the street from my apartment. I was worried about having trouble negotiating the space, but I was fine. I had no trouble and didn't really even worry about energy, since Tre Scalini is right across the street.
On Saturday, Ken and I drove up to Jersey City for a dinner fundraiser that my Dad's friends arranged for me. It was fun seeing everyone. There was a fabulous drag queen lip synching to Portuguese music. A little 4 year old girl danced like crazy with her. I got pretty tired and felt so happy to pop my prosthesis off on the car ride home. He walked with me from his house to mine, which was another .26 miles.
Yesterday, I met my home care occupational therapist, Gail. She is going to help me get more efficient in my day-to-day activities so that I don't run out of energy. Yay! I could use some suggestions. Physical therapist Jim supported me in walking with the cane. I am not terrific at it, but I am getting better every day. Prosthesist Jeff also came by to check the locking mechanism on my leg. Sometimes when I walk, the pin becomes unlocked. He made a few suggestions. If they don't work, he will replace the pins on my liners.
I had another solo adventure of taking a cab to Elissa's birthday party. I enjoyed myself at the party. Everyone was so gracious in getting me food and drinks. I forgot how much one stands and walks while carrying things at a party. I was a little frustrated that I can't do that too much yet,
I also got myself to the Amputee Support Group. I painstakingly got down the steps and hailed a cab. The driver was amazing. He had me sit up front and he folded my walker for me and put it in the backseat. When we got to Magee, he had trouble opening the walker and oiled the hinges for me. He also stopped traffic in both lanes so that I didn't feel like I had to rush. At the meeting, I met the other amputees. We discussed going to a Phillies game. It should be fun!
My gorgeous genius cousin Stephanie is in town for medical conferences. We met up for dinner across the street from my apartment. I was worried about having trouble negotiating the space, but I was fine. I had no trouble and didn't really even worry about energy, since Tre Scalini is right across the street.
On Saturday, Ken and I drove up to Jersey City for a dinner fundraiser that my Dad's friends arranged for me. It was fun seeing everyone. There was a fabulous drag queen lip synching to Portuguese music. A little 4 year old girl danced like crazy with her. I got pretty tired and felt so happy to pop my prosthesis off on the car ride home. He walked with me from his house to mine, which was another .26 miles.
Yesterday, I met my home care occupational therapist, Gail. She is going to help me get more efficient in my day-to-day activities so that I don't run out of energy. Yay! I could use some suggestions. Physical therapist Jim supported me in walking with the cane. I am not terrific at it, but I am getting better every day. Prosthesist Jeff also came by to check the locking mechanism on my leg. Sometimes when I walk, the pin becomes unlocked. He made a few suggestions. If they don't work, he will replace the pins on my liners.
I had another solo adventure of taking a cab to Elissa's birthday party. I enjoyed myself at the party. Everyone was so gracious in getting me food and drinks. I forgot how much one stands and walks while carrying things at a party. I was a little frustrated that I can't do that too much yet,
Saturday, May 11, 2013
Walking videos
This is me walking for maybe the third time on my prosthesis in my arm.
http://youtu.be/vbZqOiH6z3A
And this is me walking on my last day of therapy at Magee.
http://youtu.be/Q-pLVjQHteg
I am so proud of how much better I am now. Hooray to my amazing physical therapist, Helen, and my talented occupational therapist, Katie, for all their awesome work.
http://youtu.be/vbZqOiH6z3A
And this is me walking on my last day of therapy at Magee.
http://youtu.be/Q-pLVjQHteg
I am so proud of how much better I am now. Hooray to my amazing physical therapist, Helen, and my talented occupational therapist, Katie, for all their awesome work.
Friday, May 10, 2013
Leaving Magee on two legs
I left Magee yesterday. I said my goodbyes to the lovely patients, hard-working nurses, amazing therapists, and supportive staff. Leaving was harder this time, maybe because I knew how much work being home would be. I wish that all my fellow patients get to leave soon and with more mobility as well.
Ken and I celebrated by walking to LeVirtu, a delightful Italian restaurant across the street from me. We walked slowly, skirting manhole covers and uneven bricks. I felt triumphant when we got to the table. The owners greeted us warmly and we enjoyed our meal. My sore throat made eating trickier, but I did my best. When we got the check, it turned out that Cathy and Francis had paid for us. It was very nice.
We walked back to my apartment and I scooted up the steps on my butt. I was too tired to go up on my legs and I didn't want to exhaust myself. I slept perfectly in my bed last night.
Today, I walked into chemo on two legs for the first time since last summer. My nurses and fellow chemo patients cheered for me. I showed off my walking for Dr. Rubin. I even got to see a patient whom I hadn't seen for over a month.
I feel like I belong to two social clubs: the folks at Magee and the folks at chemo. I find it incredibly helpful to be around people with similar struggles.
Ken and I celebrated by walking to LeVirtu, a delightful Italian restaurant across the street from me. We walked slowly, skirting manhole covers and uneven bricks. I felt triumphant when we got to the table. The owners greeted us warmly and we enjoyed our meal. My sore throat made eating trickier, but I did my best. When we got the check, it turned out that Cathy and Francis had paid for us. It was very nice.
We walked back to my apartment and I scooted up the steps on my butt. I was too tired to go up on my legs and I didn't want to exhaust myself. I slept perfectly in my bed last night.
Today, I walked into chemo on two legs for the first time since last summer. My nurses and fellow chemo patients cheered for me. I showed off my walking for Dr. Rubin. I even got to see a patient whom I hadn't seen for over a month.
I feel like I belong to two social clubs: the folks at Magee and the folks at chemo. I find it incredibly helpful to be around people with similar struggles.
Monday, May 6, 2013
Walking with a cane
Today, I walked with a cane! I didn't go very far and I took quick, tiny steps, but I was able to walk with a cane. Yay!
At breakfast, one of the other patients said that I inspired her because I was "worse off" than everyone else and that I always seemed so happy. I don't think I am worse off. I don't even know how to compare my experiences with those of people with spinal cord injuries, MS, or joint replacement surgeries. At least I am not in pain usually. I started to share these thoughts with her, but she reminded me that cancer is life-threatening and that her illness was not. I forgot about that. Still, I am not planning on dying from this cancer. I expect to be cancer free and walking wonderfully in five years.
Sunday, May 5, 2013
Walking achievements
I have been practicing walking and shifting my weight to my prosthesis for the past week. It's hard work. Today, I balanced on my prosthesis for 15 seconds. I had to hold onto bars for support, but that is my new record. I can balance on my right leg, without arm support, for about 20 minutes or more. I may never get that good on my left leg, but I hope to stand on it without support for maybe 30 seconds in the future.
Rebecca is an amazingly inspiring volunteer who is also an above-knee amputee. She lost her leg about 2 1/2 years ago and walks so well now that I couldn't tell that she has a prosthesis. Her Blog details her experiences in learning to walk and use her prosthesis. She committed herself to walking 1,000 miles on her prosthesis. I decided to do the same thing. I am getting a pedometer and will start measuring my steps when I leave Magee. I hope I can do it by August 2015, to mark 2 years after being diagnosed with sarcoma. I invite my family and friends to participate as well. It is easy to take our abilities to move freely for granted, but it's not certain that we will always have freedom of movement. I want to celebrate every step that I can take.
At mealtimes, I sit in the cafeteria at communal tables with other patients. We get to know each other. At lunch, people often compliment each other on their walking during morning therapy. We get to brag about standing longer, taking more steps, or walking up the stairs to encouraging listeners who know exactly how hard won these small victories were. Everyone has a story of what brought them to Magee. Some people had accidents. Other people have chronic diseases. Some people had joint replacement surgeries. Many people have a few medical problems.
In some ways, people are so delicate. It doesn't take much for us to lose our abilities to move ourselves and control our limbs. In other ways, people seem to rise to the occasion. We practice standing and leaning. We practice walking and balancing. We get up again.
I tend to think of us as not being at such different levels, although some of us have more mobility than others. We are all dealing with different experiences. We are so gentle with each other here. It feels more supportive than life outside of the hospital. Outside of the hospital, everyone has different struggles, but people are usually less open about them. People outside of the hospital often don't share their micro- victories and tiny achievements either. I don't know if it is because healthy grown ups tend to arrange their lives so that they minimize challenges or if it is just not something we tend to discuss. I
Rebecca is an amazingly inspiring volunteer who is also an above-knee amputee. She lost her leg about 2 1/2 years ago and walks so well now that I couldn't tell that she has a prosthesis. Her Blog details her experiences in learning to walk and use her prosthesis. She committed herself to walking 1,000 miles on her prosthesis. I decided to do the same thing. I am getting a pedometer and will start measuring my steps when I leave Magee. I hope I can do it by August 2015, to mark 2 years after being diagnosed with sarcoma. I invite my family and friends to participate as well. It is easy to take our abilities to move freely for granted, but it's not certain that we will always have freedom of movement. I want to celebrate every step that I can take.
At mealtimes, I sit in the cafeteria at communal tables with other patients. We get to know each other. At lunch, people often compliment each other on their walking during morning therapy. We get to brag about standing longer, taking more steps, or walking up the stairs to encouraging listeners who know exactly how hard won these small victories were. Everyone has a story of what brought them to Magee. Some people had accidents. Other people have chronic diseases. Some people had joint replacement surgeries. Many people have a few medical problems.
In some ways, people are so delicate. It doesn't take much for us to lose our abilities to move ourselves and control our limbs. In other ways, people seem to rise to the occasion. We practice standing and leaning. We practice walking and balancing. We get up again.
I tend to think of us as not being at such different levels, although some of us have more mobility than others. We are all dealing with different experiences. We are so gentle with each other here. It feels more supportive than life outside of the hospital. Outside of the hospital, everyone has different struggles, but people are usually less open about them. People outside of the hospital often don't share their micro- victories and tiny achievements either. I don't know if it is because healthy grown ups tend to arrange their lives so that they minimize challenges or if it is just not something we tend to discuss. I
Thursday, May 2, 2013
The best parts of being an above-knee amputee (AK):
1. It is easier to tell my left from my right.
2. Crutching is a mini workout. My arms have never been this strong.
3. Getting around makes me be mindful of myself and everything around me.
4. I appreciate little things like sensation, using a bathroom alone, being able to stand, getting dressed, and going outside.
5. I get to feel like I achieved something big every day that I learn how to use my leg.
6. I have met so many super strong folks who are rehabilitating their bodies.
7. I get to meet so many supportive folks like my therapists, nurses, and doctors.
8. I have more empathy for people with mobility challenges.
9. I know, better than ever, that I live because of my amazing community.
10. I have perspective on what makes something a problem. Sometimes it's hard to tell the difference between a blessing and a problem.
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