First day of pt at Magee outpatient

Today Ken and I headed to Magee's outpatient center for my physical therapy evaluation. I met Julie and she watched me walk with crutches. Then she had me doff the leg so that she could examine my limb. My hip flexors are still pretty tight, but I am having trouble laying on my belly to stretch them. Julie told me other stretches I could do.

After that, I walked with a cane. I showed off how well I can have all my weight on lefty for a second, maybe, if one is generous. I showed my generally good stair skills.

Then it was time to go. My appointments are Tuesdays and Thursdays. I feel glad to start, but frustrated by how slow my learning is. I just want to be able to do everything I want again.  

Sometimes, it feels less ok for me to complain since, you know, I am not dead because of the amputation. I miss my leg (when it was healthy) so much. I even miss the knee pain because at least I had a knee that could feel. Although it is nice to not have arthritis anymore. I badly miss the ease of how things were. Things may never be so easy again. Even if they are, I always notice the ease with wonder. 

Anosmia and neighborliness

I have been a little more breathless in the last few days. I haven't been able to walk as far, but I have left my place everyday. Yay! I need to set up my pedometer to keep better track of my distances. I had no appointments last week and didn't even call a doctor's office once. How delightfully unusual for me!

I have been struggling with a lack of appetite lately. On Friday, I had a clue. I was out with friends and ordered bread pudding. Folks a few seats away exclaimed how delicious it smelled. I couldn't smell it at all. I have since not been able to smell rubbing alcohol and burning toast. Occasionally a smell gets through, but it is pretty faint to me. No wonder beer tastes so bad to me! And no wonder why everything seems so salty! I guess this anosmia is a side effect of my chemo.

I practiced cane walking with Ken on Saturday. I get tired from it quickly. It is frustrating to not get too far before I need to rest.

Today, my parents came to visit. I met them outside to save them from climbing the steps. Then we had an utterly delightful dinner at Tre Scalini, across the street from my apartment. I ate a lot. I think the complex textures and flavors helped because  I could appreciate subtle components and not just salt. Also, we ate slowly with good conversation and lots of pausing. The owners stopped by the table to say hello to me and check in with our experiences. It was fantastic!

I just ordered groceries for tomorrow. I love this system of ordering from home. i may never regularly grocery shop again. I am going to try out cooking foods with a focus on subtle flavors and textures. Maybe it will help.

After dinner, my parents showed me a bedside chest that they brought. We all have some trouble on my stairs empty handed and could not even take it out of the trunk. I asked my neighbor, who has a barber shop next door. He carried it up the steps faster than I could climb the steps on my own. At the top I introduced myself and thanked him. He wouldn't take the money that my parents offered. I love the neighborliness of my neighborhood.

My mother helped with some cleaning and I gave her about 6 pairs of shoes that won't work with my prosthesis. Dad and I had a nice chat. He is having heart surgery tomorrow and it was pleasant to connect with him beforehand.

Biggest walk in 20 months!

I cannot tell you how excited I am about my walk today! I decided to head out to just the coffee shop about a block or so away to get some food and some exercise. I had been resting on couches since chemo and I wanted to move.

After my leisurely bagel and tea, I stepped outside and decided to keep going. The weather was crisp and breezy; I had energy. I decided to get my nails done. I passed the first shop because the steps seemed tricky. On the next block was another nail salon with no steps. 

I was the only customer. Anna worked on my nails and tried to draw me into conversation, but her English was not quite good enough and my Vietnamese is non existent. She was concerned that my nails were brittle and did colored; I explained that it was from medication. Later she asked about my leg and I explained what happened. She told me about her auntie who had cancer too. When we were done, she wouldn't take payment at all. Anna had tears in her eyes. She wouldn't even let me reach into my bag because my nails might smear. 

After thanking her, I left the shop and decided to keep walking. I felt rested and energetic. I figured I could walk a little further and sit at the fountain and people watch. I walked and stopped a few times to catch my breath. I met two middle aged men who asked about my leg. One man, Billy, was effusive in wanting to know what it was like for me to be an amputee. He offered to host a fundraiser or dinner for me and Ken at his restaurant, which happens to be across the street from my apartment. Then he kicked me in my prosthetic leg. He wanted to see if I could feel it. His buddy knew that I could feel it because his kick made my whole leg move. I didn't fall, but mostly because of the crutches and my awesome balance. Oh, South Philly!

I made my way to the fountain and rested a while. I had a lollipop and people watched. I got up and decided to head toward the post office. I needed stamps and I could stop or turn around before that if I started to feel my energy flag. Each step past the fountain was further than I had walked on my prosthesis.

I felt giddy as I got to the post office. I had trouble with the heavy door, but a young man held it for me and kind of spotted me on the steps. I had a standing rest waiting in line because it is the slowest post office anywhere and rarely has more than one clerk working.

When I left, I started to feel a little tired, so I immediately headed a block back onto the Avenue and into the nearest coffee shop for a smoothie and much needed sitting. I felt refueled, but knew I had to conserve my energy to get back home.

I walked and rested for a few minutes at the fountain and, again, on a bench two blocks later. As I walked, I met an elderly man who walked very slowly with a cane. He looked at me and said, "Well, now I know someone worse off than me!" I don't know how to take that. Then the 92 year old told me the pep talk he gives his legs, because he isn't ready to use a wheelchair yet. I admire his toughness and his wanting to say something to help me be tough also.

I kept walking until I got to my bench on my block. I rested a long while so that I could climb my 22 steps. When I got inside, I used a map to calculate my distance. I had walked 1.08 miles!! Sure it took me 4 hours, but I had a meal and a manicure. Besides, who 's counting?

My therapist told me about volunteers who hug folks as they finish races in the Special Olympics. I wished I had a team of huggers greeting me in my apartment to celebrate my walk. I settled for Bunky purring and cuddling, which is pretty fantastic too.

To celebrate (and conserve energy), I ordered delivery. I had steamed shrimp and snow peas with no sauce and it was bland enough for me to eat. Yet another win today! 

I announced my walk on Facebook and felt so supported. My cousin and her family went for a mile walk together in my honor. 

I might stop smiling about this walk, but only because something even more amazing happened.

Recovering from round 2, Cisplatin/ taxol

I have been sleeping and resting all weekend since I had chemo on Friday. I haven't been as sick as last time and I have been eating. 

I had some artichokes and a smoothie made with a nutrition drink and some berries.

It was ok, better than the drink on its own. I have been trying hard to eat, but it's tough, between the nausea and the lack of appetite.

I have a bunch of new prescriptions for pain, nausea, appetite, and coughing. I have an inhaler that I have used every day. It helps when I am coughing so badly that I cannot breathe. 

I think I smell weird too. Ken says that I don't, but I notice a chemical smell sometimes even just a few hours after I shower. To me, it smells like cold cuts and medicine. I hope no one else can tell.

I will be starting at Magee Riverfront outpatient physical therapy next week. Finally! It took over a month to switch from my capitated physical therapy provider who spent less than 10 minutes a session helping me walk. It is tough with the new chemo: in the last 19 days (since it started), I wore my leg for only about 6 days. I spent most of my time resting. I guess we will find out how to make it work for physical therapy. I can't wait to walk without holding onto anything.

In my down time, I have watched way too much television and read a book every couple of days. I started an embroidery project. I am still working on my felt model of my heart and lungs. I am re-working the folk song "I'll fly away" as a song to the tumors. (I will post the lyrics  when I have more energy.) I am bored out of my mind with having no energy. If you have any ideas, do let me know.

Post cisplatin & taxol

I was pretty sick for the first few days after chemo. My digestive system was unhappy in most of the ways that it could be and I felt exhausted. I had difficulty eating anything much until Tuesday night.

On Wednesday, I had some energy and walked to the coffeeshop and back. I napped for hours when I came home. I even went out to a Thai restaurant with Ken. On Thursday, I went for a walk with Rebecca at the grocery store. I walked leaning on the cart. Rebecca encouraged me to try walking with my cane.

The next day, I went for a walk with my friend Candace. I walked about .25 miles with just the cane. It was thrilling. On the way back, I stumbled and found myself falling in my prosthesis for the first time. It was very slow, but I couldn't straighten my leg. Luckily, Candace was there to catch me before I hit the ground.

I went for another walk on Friday and even went to the pub with some friends. I had trouble drinking much. Everything tasted like it had been sitting in rusty cans. On Sunday, I went to a fundraiser for STARS (Street Tails Animal Rescue). A friend recommended a ginger cider and it was good. My belly was fine.

Since then, I haven't been feeling so great. I have been running a slight fever and coughing fairly constantly. The oncologist's office said to go to the emergency room because my white blood count was a little low. I will go tomorrow.

Cisplatin and taxol #1

I had the new chemo Friday. The nurses almost gave me Doxil instead, but I told them that we switched. Mom and Athena came to help me that afternoon.

I am very tired. I am nauseous with diahrrea. I haven't worn my leg since Friday. I have been coughing so badly that it is hard for me to sleep. I ate half a banana today. 

I might lose my hair again. I am worried I am getting dehydrated. I am feeling pretty down because of feeling so lousy. I hope tomorrow is better.