Christmas vacation

I am at my parents' house with Ken. We are leaving here tomorrow to spend Christmas with his family in Wildwood.

I haven't been feeling well. I have been coughing constantly and vomiting too. I really can't breathe when I am laying down. At best, I am wheezing constantly. It is terrifying to not be getting air in.

Somehow Percocet stops the cough so there is some relief. 

A few days ago, I had physical therapy for the first time sinice the accident. I was fatigued from wearing my leg down my steps and to Ken's car, and from the car to the mat room at therapy. I explained the accident and my injuries.the therapist decided to just do stretches. As I explained the pain, the therapist said she was worried about injuries and said she wouldn't work on the leg until I had an MRI.

Friday, I saw my primary care doctor a d re-explained the accident. He prescribed me painkillers, an MRI for my little leg, and an appointment for an optometrist. He said he chest tube scar looked good.

Thank you for all of your well wishes and holiday greetings. I have been spending my time laying around, watching television and movies.

Recovery

My folks drove me back to Philly last Wednesday. 

I had chemo on Friday. My little leg has been hurting from my pelvic bones through the muscles. Percocet helps only a little. I have had very few pain free moments in the last few weeks. I think it is getting worse too. Dr. Rubin said we would do scans on it if it still hurts in 2 weeks.

I stayed with Ken until today so that he could help me with eating and everything. I am so grateful to him. I have been feeling like I am a burden on my loved ones because I need so much help. They reassure me, but I struggle with bad feelings lately. Being in constant pain is a downer!

I took a painkiller a little bit ago and am watching a cheesy Christmas romantic comedy. I can feel the waves of numbness starting. I am tired of being sick and in pain.

Recuperating at my parents' house

Last week was a little rough. After the car accident, I was moved from one emergency room to another. At the second hospital, a surgeon inserted a tube into my right chest wall to re-inflate my collapsed lung. 

The next morning, I was fitted with a back brace that stabilizes my torso. It fits like a corset. I spent a lot of time resting in my hospital bed. The physical therapy team was amazing and helped me put on my prosthesis to get me walking. I walked down the hall and back, with the therapy aide lugging the container of my lung fluids behind us. I was sore, mostly from the chest tube.

On Saturday, my godmother, her husband, and Ken came to visit me. During the visit, the nurse practitioner took out my chest tube. It hurt much less than I thought it would. Removing the tape and bandages hurt more than taking out the tube.

I got discharged on Sunday. My father and brother came to pick me up. We drove home. Mom had a belated thanksgiving dinner waiting for us as we came inside.

Since then, I have been spending a lot of time in my wheelchair and in the hospital chair at my parents' house. I can get around with my crutches, too, but I cannot get my prosthesis on. The wiggly movements that I use to don my prosthesis are irritating to my back. They are also difficult to do while wearing my back brace.

Yesterday, I tried to lay on my belly. My left hip has gotten very tight with all the sitting. I could barely lay on my stomach for five minutes before the muscles were too achy to continue. I tried again today.

We also took off the bandages from the chest tube. The area is still tender. My brace digs into my side right above the scar from the chest tube. Athena helped me stuff my brace with socks to pad my breasts and sides from the harder edges of the back brace. It's much better now.

I am going to Hershey, Pennsylvania today with my mother and sisters. They had already planned the trip and it will be nice to have a mini vacation. I will be back to Philadelphia on Monday.

I feel so lucky to have walked, well, hopped away from the accident and that Athena and I are ok. The car is not ok; it is totaled.

Car accident

I have had a few things going on since I last updated the blog. Notably, I was a guest speaker twice for the Creative Arts in Therapy program at Drexel University. The first time I spoke about resilience and body image in cancer patients and disabled individuals for 2nd year Dance/ Movement therapy students. The second time, I spoke immediately after physical therapy about my experiences with cancer and disability to medical art therapy students. I still haven't processed the experiences, though I enjoyed myself.

This Sunday, my sister Athena drove to Philly to help me recover from chemo. She helped clean up my apartment and set up my Christmas tree. On Monday, I ran a slight fever and had a sore throat so I reported my symptoms to the oncology office. They asked me to come in Tuesday at noon. I cancelled my physical therapy appointment for illness.

After the appointment, we waited for antibiotics before heading to New Jeraey, to my parents' house. At first there was lots of traffic, then it thinned out. I kept falling asleep. Then, we were making good time on one the smaller curvy roads.

Suddenly, I heard Athena shout. We were not on the road anymore but sliding up th embankment and into a phone poll. My face felt like I just got slapped. People immediately stopped to help us. Athena seemed fine and remarkably calm. She left the car.

Eventually, I got myself out of the car by taking off my prosthesis and sliding across the drivers side. The front end was smashed in and all of out qitbags had gone off. With help, I crutched over to sit in a police officer's car. My back syltqrted to hurt.

When the ambulance came, the emts strapped me to a back boar which was very painful. We went to the nearest hospital where I repeatedly gave my extensive medical history and waited for morphine. I had trouble breathing on my back and kept trying to curl in a ball, against medical advice. When I left for the ct scan (@ 7:30), dad and Athena headed to the car to get stuff.

The doctor cam back in the room and explained that I fractured my L1 vertebra. She also saw that my right lung was collapsed though she was uncomfortable treating it because of the cancer. I got transferred to another hospital where they immediately stuck a tube in my chest to re inflate my lung. 

I have been in a fair amount of pain since. My parents, Athena, and Ken visited me today. It hurts to breathe but the back brace helps. My eye is swollen shut and my vieiion is blurry.

Please send me good thoughs and thank you for your prayers and wishes.

Mile walk

I walked another mile (just about) yesterday. I stopped for a few minutes on all the benches. I stopped for a bagel and tea at a coffee shop at the .5 mile mark. Then I turned around and very slowly walked home. 

I stopped at the fountain for 15 minutes to restore my energy and make some wishes. Mostly about walking and cancer.

I shopped at a tiny grocery store and bought a bottle of bitters because it is supposed to be helpful for nausea. I also got some ginger candy for the same reason. I hope it helps.

I stopped at Elissa's store and chatted with her for a while. When I left, it was cold. 

I got home fine. I was tired, but I had the energy to work on a crafty project for a while before heating up dinner.

I feel so proud of myself. I walked well enough that someone asked if I sprained my ankle. The asker might not have been too observant, but I like to think I had been bending my knee and balancing pretty well.

Post chemo #4

I was especially exhausted this past weekend. I think I slept about 20 hours a day from Saturday through Monday at Ken's house. I missed Halloween parties. I barely ate. When I returned home, Bunky did not leave my side until I felt better.

Then I had amazing pt on Tuesday and Thursday. I am getting the 4 step gait better so I don't have to think about each step. It takes more energy, so I can't go as far.

I even went for a .5 mile walk after pt on Thursday. When I get my energy back, I really try to use it. I figure if i can do the steps, i can walk at least a block. 

Of course, I spend my evenings sprawled in bed, trying to stretch little leg and my lower back which get so tight and achy with the walking. I

Today, I went to an amputee clinic with Ken. I was ready to work out, but it was mostly educational about foot care, recreation, the wellness gym, and yoga. We had a great lunch and I enjoyed connecting with he other amputees.

Then Ken and I met with the men who will put in the bannister on his steps. I am so thrilled about this change. No more bumping up steps on my butt.

Afterward, my parents joined us for a lovely, leisurely dinner at Le Virtu, across the street from my apartment. I did my best in nearly finishing my plate, with some help. Cathy and Francis, the owners, made it a very special night.

I have been organizing my pills by size and shape before taking them, mostly because I am a weirdo.

Barnes field trip

I went to the <a href="http://www.barnesfoundation.org"> Barnes Foundation </a> 

with my friend Marcy yesterday. I am a member, so it was free with membership . 

Marcy picked me up and we drove through the city to the museum. 

We parked and I practiced my 4-point walking style with my crutches to the main entrance. We borrowed one of the Barnes's wheheelchairs and set off looking at art work.

Marcy is very familiar with these paintings and told little stories about some of the artwork. I found it fascinating. One day I will be strong enough to go on foot and see the paintings standing up. Though it is pretty great to borrow a wheelchair from amuseum too.

My favorite painting is <a href="http://aestheticapperceptions.wordpress.com/2012/11/19/painting-of-the-day-7/">Flayed Rabbit</a> by Soutine. I like his paintings and kind of wish I painted like him.

After the museum, we went to lunch at Honey's, one of my favorite places in Philly. I felt not sick for the first time in a long time!

More chemo #4 recovery

I have been exhausted since chemo on Friday. My parents came to visit on their way to vacationing in Virginia.it was good to see them and I was reasonably awake during the visit.

I had enough energy to walk home from Ken's house (with his help) on Sunday. We stopped (and rested) at a street festival on the way. I had a cup of blueberry lemonade ice cream and sat with friends while Ken dropped stuff off at my place. It was gorgeous out, but I started to get cold. Ken bought me a hat. Then I started to get tired. Very tired. We walked the rest of the way home. I put on pajamas and went straight to bed.

I woke up a few hours later at 7. Then I got wildly, horribly sick in all kinds of ways. It's hard enough getting sick. it is even harder when you have mobility issues and cannot run to the bathroom or easily clean up after yourself. Ice cream was a bad choice. The last few times I tried it, I have become sick, too. I may not try it again. My food options dwindle every time I get sick. I sometimes cannot get myself to try that food again. No chocolate. No ice cream. Nothing salty. Nothing spicy. No yogurt. No mushrooms. No onions. No beer (because it tastes terrible without my sense of smell). Meat is pretty hit or miss. The list goes on. Of course, I am barely eating these days. I had about half a waffle and half a sandwich today. I am trying, but its hard when I am either getting sick or sleep(y/ing) most of the time.

Today, I have struggled to stay awake for more than a few hours at a time. I managed a shower, which I had put off because I simply didn't have the energy. I ordered groceries and sewed a felt cupcake. I drew a little. I got sick a little. Mostly, I felt down about not having energy. I just want to feel good and walk around like its no big deal, like I used to be able to do. When I don't practice as much, I feel a little sad and overwhelmed at how hard everything is. I miss the old normal of my life. I miss not having cancer.

Chemo #4 recovery

I had my fourth cisplatin/ taxol treatment on Friday. It makes me tired for a few days. I seem to be less nauseous this time, maybe because I could keep down the anti-nausea meds. Yay!

My brain scan results were not in, but that probably means that there was nothing significant in them. That's good, since brain tumors are considered significant. I also had to promise to go to the hospital if and when I start coughing up lots of blood again. Also, the plan is to try to prevent the cancer from growing by staying one step ahead of it.

So, I am watching football at Ken's house today. It's breast cancer awareness month and the players all are wearing pink sneakers. I know it's for a good cause, but I can't help but feel like it would be better to support all cancer research. About 65% of breast cancer patients tend to survive five years post-treatment. That's great and I hope I am one of those statistics. I don't know the survival rate for metastatic synovial sarcoma, but I know that the median survival rate is one year post-diagnosis. I am not saying breast cancer shouldn't get support, but that it gets so much support that other cancers do not.

My anti cancer lullaby

I rewrote the lyrics to "I'll Fly Away" as a lullaby to the tumor's who live in my lungs. I sing it most nights. I have a weak singing voice, though. Singing requires a lot more breath than I normally have.

If you can sing, sing it for me. Or for the tumor's living inside of someone else's body. Put it up on YouTube.

Some versions of the original song:
Alison Krause and Gillian Welch
Johnny Cash

I am not sure if all my words works, but here they are:
Some bright morning, when the chemo's over
I'll kill you all
All the cancer cells will then be gone
I'll kill you all

(Chorus)
I'll kill you all, oh tumors
I'll kill you all in the morning
When you die, hallelujah, by and by, I'll celebrate!

When the CT scans come back all clear,
I killed you all
Like a bird, my heart and soul will fly,
I'll kill you all

Chorus

Oh how glad and happy will I be
I'll kill you all
No more chemo sessions all the time
I'll kill you all

Chorus

Just a few more chemo sessions and
I'll kill you all
And my body's health restored again.
I'll kill you all

Chorus

Brain MRI

The MRI on my brain today went well. Tracy picked me up and Nicole waited with me. The technician was the same one who'd been so rude to me about breast cancer last year. She blew 2 veins before I asked her to get someone else. The next person it the vein right away, but the needle had a bad leak and blood spilled over me, my bag and the floor. There was a lot of blood still when I looked halfway through the cleanup,

The MRI itself was loud, as usual. I imagined a skit in which a person lay on the table. Several people would stand over the person making random noises: one person might clap, another shake his keys, another stomp her feet. People who have never had one don't know the soundscape that they are missing out on.

After the MRI, we went to Tap Room for lunch. I drank cider because it seems the only alcohol that tastes ok to me, ken met us on his way back from his vacation. When I finally got home, I needed a nap.

S-u-c-c-e-s-s

Finally my energy seems back after my chemo session last week. Life is infinitely easier when walking across a room does not induce napping. It is hard to function when you are too tired to focus on a movie plot. 

I had fantastic therapy with Deb on Thursday. I got to ride a (stationary) bike! And stand on a cool machine that measures weight distribution between your feet. When I thought I was 50/50 with my weight even on my feet, I actually had 70% of my weight on my left prosthetic) foot. That surprised Deb and me.

Today I spent girl time with Emily and Nicole. We chatted at my place and then drove up to Royal Tavern for lunch. I had a Bloody Mary and a burger. I can tolerate more spice now, yay! Though my belly was pretty upset right afterwards, it was worth it. It was worth just being out of the house and in a place I hadn't gone in years. I ate half my burger (a lot for me). Success!

Then Emily and I went to Green Street Consignment shop to get her a dress for her brother's wedding. She tried on dresses and I sat in a comfy chair by the shoes. Nothing fit. As we started to leave, Emily pulled out a pair of bright red skinny corduroys a few sizes too big for me. I said, "Let's try them." 

I asked her to come into the dressing room with me. There was no chair. I popped off my leg and handed it to Emily. Then I sat on the floor in my shorts. I slid them off while she took my sneaker off the prosthesis. Then we dressed the leg. I got off the floor and, with Emily's help, donned the leg. Then I finished putting on the pants. I turned and looked in the mirror. The leg didn't look too weird with these pants. I would need a belt but the pants looked good. I stood in the checkout line with them. The computers were down, so the salesclerk had to manually run credit cards. As we waited, Emily saw a navy blue cocktail dress and tried it on. It looked perfect on her. Success!

We left the store without a single person asking me about my leg. I mean, there were stares. But no comments. More success!

Pt with Deb

My new physical therapist, Deb, is amazing. She is like a cheerleader, a coach, and a mom in one. Deb said that she believes I can walk without an assisting device and that we will get me walking with a cane before too long. She asked me my goals for therapy. I said 1) walking without assistance, 2) climbing steps with overhangs without tripping, 3) riding my bike, and 4) doing a cartwheel. I had never really done a cartwheel before, but I always wanted to do one. Plus, it will be a good party trick. Deb didn't bat an eye.

We did lots of leg lifts while I wore my prosthesis. I lay on my right side, my back, and my left side while using my little leg to kick out the 10 lb prosthesis. It was hard work. My homework is to practice laying on my belly for 15 minutes twice a day. That's about my limit anyway.

Next, we practiced walking with 2 canes. It is hard for me to get the rhythm of moving the right cane, my left foot, my left hand, and my right foot down, but I am getting better at it. I haven't walked naturally since last February, 20 months ago. I have no idea what I am supposed to do with my arms. Deb says that it will come, but for now I count out the rhythm. I did better walking with a single cane after all my practice with two canes.

When I got home, I treated myself to a smoothie and watching Beverly Hills Cop (again, for the 1,000 time). I love that movie. Then my baby brother Jimmy came over and we talked and laughed and watched movies for hours.

Today, I have been utterly exhausted. I went for a very short walk, but had to rest. I hope I didn't overdue it yesterday.

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.

Bye week

I don't have chemo or Herceptin this week. It's a bye week so that I can get rid of all the Doxil in my system before starting a new chemo regimen: Cisplatin and Taxol. I worry about the new side effects since Doxil has been pretty easy for me.

I asked my rehab doctor to talk to my primary care doctor to switch my pt. I am not learning enough where I am at. My Magee PTs gave me new exercises to strengthen my left hip so that I use the leg more.

Today, I had my first mammogram. I took a cab there and the administrators took a long time to process my paperwork. I got annoyed with them printing things out to give me to give to other people. It's so hard to carry paperwork without folding it or crumpling it when you are on crutches.

The assistant brought me back to the changing room and handed me a robe. When I put it on, I saw that one of the ties was missing. I couldn't hold it closed, carry my clothes, and walk (with crutches) to the lockers, so I went with the lack of modesty. I have had so many strangers look at my breasts in the last year. It's better than falling on my face.

The technician called me into a room off of the changing room. She told me to take off my robe and stand in front of the machine. She put stickers over my nipples and over the lumpectomy scar. Then she moved my left breast on to the table of the machine, just so, and then a plate came down and pressed it flat. It hurt for the few seconds until the plate came back up. She repeated the same thing for the right breast. It also hurt. Then she had the plates of the machine squeeze my left breast kind of at an angle. That hurt more. It brought tears to my eyes. Then she did the same on the right side. The squeezing felt uncomfortable on my port as well. More tears in my eyes. Then I was done! I don't know if I am more sensitive than other folks, but it seemed to hurt more than other women described to me. At least it just hurt during the squashing.

I was exhausted and due for Percocet by the time I left. I had trouble hailing a cab because I was having difficulty balancing without using both crutches. A guy (who turned put to be homeless) noticed my trouble and helped me.  He called up 3 cab companies and frantically waved at cabs for 15 minutes before an empty one came by. I gave him a dollar for his efforts. He even helped me into the cab. Yay for help from strangers!

Oh, and this:

Cancer-versery

About a year ago, I was diagnosed with sarcoma in my left leg and metastases in my lungs. It's my cancer-versery.

In that year, I have had over 40 chemo sessions; been radiated over 30 times, had my world shrink to my apartment, then just my bed; have my world expand again to my whole apartment, then my neighborhood; lost a leg; gained a prosthesis; learned to walk with the prosthesis and a walker; learned to crutch with the prosthesis; spent lots of nights in hospitals; and spent most holidays in hospitals. This past weekend, I showered standing up for the first time in well over a year. It was thrilling. I haven't been able to stop talking about it.

After spending 9 months on Percocet, OxyContin, gabapentin, and morphine, I was so happy to be pain drug free in January. Now, I am back to taking 3-4 Percocets a day and choosing between reduced pain and reduced balance. Dr. Rubin said that the scans from last week did not show cancer anywhere but in my lungs. Yay! There is some activity in my little leg; I will ask her about it tomorrow.

Also, tomorrow I have my first mammogram following Herceptin. It's going to be exciting. I am probably going to sleep as soon as I get home.

Family like crazy

It's been a busy, travel-y, family-filled week. I have been too tired and too busy to write about it, but I have to give it a try.

Last Friday, after Herceptin, my brother Jimmy and his friend Crystal drove to Philly to pick me up. We had a pleasant 2.5 hour drive up to my parents' house. The next morning, we drove another hour or so up to my cousin Denise's house. She hosted a giant family reunion. I enjoyed visiting with everyone. I even walked on grass (and on a slope!) for the first time. It was delightful.





Sunday morning, Jimmy drove me back to Philly. An hour or so later, Ken and I were headed to Wildwood to visit his family. I went down 2 flights of stairs at my parents' house, up and down my giant set of stairs at my apartment, and up 2 flights of steps at Ken's parents' house. That's a lot of steps!

Monday, we all headed to the beach. His young nephew wondered where I put my leg. I explained that it couldn't come to the beach with us. We got a beach wheelchair and Ken pushed it across the sand for me. It seemed really tough to move. I wanted to get in the water, but Ken didn't know a way to easily move the wheelchair closer. I played in the sand with Ken's nephew and niece, instead. We pretended that we buried my left leg in the sand.




Despite the umbrella, SPF 50 sunblock, and a t-shirt, I got sunburned. Stupid chemo drug side effects. It was so worth the beach trip, though. The next day, we walked about half a mile on the boardwalk. I was pretty tired that night.

Yesterday, I had physical therapy for the third time in outpatient. We are working on strengthening my right leg and stretching the left, but I wish we practiced walking more. I need more direction with it to get better at it.

Today, Ken drove Nicole and I to Methodist for a battery of tests. We got there around 9:30 am. After the injection for the bone scan drinking the most disgusting liquid for the CT scan, I had to wait for the chemicals to get into the right parts of my body. During the wait, I had the 2D Echo (basically a heart ultrasound) that left me feeling a little bruised. Then, I had the CT scan and the bone scan. I will probably find out these results next week.

Cat toy

I made a cancer cell cat toy so that Bunk could kill some cancer too. 

Another busy week

(There's no reason for Mr. Bunky's picture to be here except that he is patiently waiting for me to go to sleep so he can sleep, too.)

I started outpatient physical therapy this week at Novacare. I only have 11 more sessions. I aim to be walking with just a cane. PT Dan seemed very straightforward as he evaluated my range of motion and my abilities. 

I had my regular appointment with my gyno on Thursday. I really like her. She spent an hour reviewing my medical stuff from last year with me. I felt so cared for! She was concerned about my support systems and my coping with everything. She's the best! In case you were wondering, I took off my leg for the exam. I was wondering about it beforehand and thought it would be easier without it. 

Friday was chemo again. My shoulder X-ray is totally clear, but my shoulder pain has escalated to where I take painkillers a few times a day. I am getting a ct-scan, a bone scan, and an EKG (my blood pressure is pretty high). I also have the ultrasound and the mammogram the surgeon ordered. I hope we can do a few of these during the same visit.

After chemo and my nap, I went for a walk in the neighborhood. Ken met up for me and we had dinner at a restaurant. We hardly ever go on dates and it was fantastic. I realized that my shoulder hurt less after the walking.

Today, I walked to Ken's house to watch the soccer game. Then we walked to Lucky to have drinks for Rich's birthday. That's about .6 miles total. I left early because my shoulder started aching and I couldn't take deep breaths without pain. 

This breathlessness makes

Me miss the easy air flow

For years I ignored 

Jimmy says that writing haikus helps with pain because it forces you to think in rhythm and in syllable which makes it harder to focus on the uncomfortable body sensations. 

Butter cake and doctors appointments

Chemo was pretty uneventful on Friday. I found out that the sarcoma in my leg was a Synovial sarcoma. It accounts for approximately 5 -10% of sarcomas in adults; sarcoma accounts for approximately 1% of adult cancers, according to Beat Sarcoma It occurs around the knee about 50% of the time and metastasizes about 50% of the time (Your cancer today).So, I guess I had the most common forms of a pretty rare cancer. Dr. Rubin said that she wanted me to get my shoulder x-rayed, as the pain has gotten worse.

Yesterday I walked with Ken 0.6 miles (roundtrip) to Melrose Diner for brunch. I was so proud of my walk there, but I was disappointed that I needed to rest so much on the return trip. We had the butter cake for dessert to celebrate. That cake is like butter with just enough flour and sugar to hold it together. Wow! I feel compelled to practice walking because physical therapy has not started yet. (I am calling to demand it, though.)

Today, I saw my surgeon who seemed impressed with how well my breast and little leg have healed following my surgeries. He was concerned about a mole on my right breast and wants to biopsy it. I guess, once again, I will have a matched set, because the scar on the right breast will be in the same spot as the scar on my left breast. I am a little nervous because all of my biopsy results have been cancer or pre-cancer, but I could break the pattern. I feel a little confused since my breasts are examined so often that it seems a little odd that someone is just now feeling concerned about the mole. I can feel anxious about it later.

Swimming!

While visiting my folks, I went for a swim in the pool. I felt nervous about getting in and out of the pool. I just sat down on a towel on the edge of the deck and scooted onto the pool steps and into the water.

My little leg felt so many sensations in the water. It felt pretty intense. My little leg is hardly ever exposed. During the day, I wear my liner and prosthesis; at night, I wear my Shrinker. The little leg wiggled as the water pushed against it. I got used to the sensation though and had a ton of fun.

In other news

I am not going to write about trying to get my COBRA information. It should be in my hands in 7 days though. Other people  with more knowledge of these situations are helping me.

I have been visiting my parents. My 3-year old niece Victoria hung out with me today. 

She enjoyed tickling my prosthetic toes. I love that she doesn't seem to notice that I have a robot leg.

Grocery shopping

Oh my goodness! I went grocery shopping today with my parents. I haven't been to a grocery store in over a year.

I decided I was only going to get cat food. I leaned on the cart for balance. My dad walked with me as we made our way through the store. The pet aisle was almost all the way on the opposite side from the entrance. The cat section was almost all the way to the back of the store. I was pretty winded when I got to the cat food section. I stopped for a while before heading back to the front of the store to check out. I was exhausted and shaky when I finally got to rest in the car.

I felt so frustrated that I was easily winded and fatigued. It was like climbing a mountain and coming to a vista where you see that it's still a very long to the top. Still, I haven't been strong enough to even attempt being in a store in so long. I have come along way.

Lost my job

I have to get COBRA to continue my medical benefits so that I can continue my fight against metastatic sarcoma (the Rebel forces) in my lungs.

Yay! Because I wasn't too busy with killing cancer cells and learning to walk. 

I could write a bluesy song: I got the cancer and the cancer and a blood clot. Then I lost my leg and my job. I guess if I had a wife who left me and a dog who ran away, I would have a hit.

Princess Leia the Tumor (appears) dead!

I have been feeling nervous over the results of my CT-Scan. I know there is no point to my nervousness, but it takes a person calmer than me to not anticipate these results, particularly in the wee hours of morning. Today, Ken and I went to my appointment with Dr. Komarnicky. She explained that Princess Leia (the tumor) had grown since the earliest scans, but that the pathologist reported that it appeared consistent with necrosis. That is, the tumor seems dead. Yay! I can't quite believe that it's true, so I keep phrasing it in these legal-ish kinds of ways. I don't need radiation on the tumor at this time. Other tumors in my lungs are alive, but I am hoping they also die. Oh, to be cancer-free!

I have been practicing walking also. I attended the Phillies game on Sunday with the amputee support group. I enjoyed tailgating with everyone. I was impressed with the stadium's accessibility and the kindness of its employees. My friend Adrienne helped me crutch around and cheer on our team. I had not been to a game in so long. It felt good to be able to be there.

Also, my brother Jimmy is visiting me today and we walked to Capogiro's to get gelato. The walk there was .3 miles and is further than I walked before. We celebrated with lemon sorbetto and pistachio gelato. Yum!

Losing my leg again (just overnight)

I didn't reach Dr. Rubin, my medical oncologist, to discuss my heart MRI. She will be on vacation until after July 4th. I hope my radiation oncologist can discuss the results with me on Monday.

I have been practicing walking more as my stamina improves from the pneumonia. Yesterday I visited my friend at his comic book store for the first time in about a year. I used crutches because they are more maneuverable than the walker. My prosthesis unlocked from my leg after half a block. It attaches to my body with a pin-system: on my little leg, I wear a liner which has a pin on the end that locks into a mechanism on my prosthesis. It is supposed to stay locked unless I specifically release it. When it unlocks, I cannot walk because it isn't attached to my body. If I took a step, my little leg would come right out of the prosthesis. It feels like my shoe is falling off, but more so.

I felt so frustrated and oddly embarrassed when I had to stop walking to fix my prosthesis. I shifted my weight back and forth to wiggle the pin back into the locking system. I almost fell while getting the pin system to re-lock. I walked another 10 feet and it unlocked again. This time I pulled out my ever-present screwdriver and yanked the pin into the lock with it. I walked another few feet and it unlocked again as I was crossing the street. I held the leg with my left hand and hobbled to the curb before re-locking it.

I sat on a bench and rested. I felt furious. I had Prosthetist Jeff fix the pin before and it seemed to be better for a while. I fumed that it put me in danger of falling. After resting, I walked the 2 blocks home, stopping to adjust my leg every 10 feet or so. I told Jeff what happened.

Today as I had lunch with my friend Elizabeth, Prosthetist Jeff texted me that he was heading over to see me. Before we left the restaurant, I used my screwdriver to ensure that my prosthesis was locked. Elizabeth and I stopped at the bike shop because I thought that bike gloves would ease the pressure on my palms from my crutches. The bike shop owner was very helpful and I cheerfully wore my new gloves out of the store. I haven't taken them off since. I recommend bike gloves to anyone using crutches, a walker, or a wheelchair. When we got back to my place, Jeff arrived perfectly timed.




He looked at my prosthesis and my liners. He seemed shocked at how easily the prosthesis unlocked. Jeff explained that the lock needed to be replaced and that it was the first instance of the lock on one of his prostheses to have a problem like that. I helped video it for his records. He also measured my little leg. Apparently, it has gotten a little bigger at the end, but my range of motion is even greater than it was. Jeff took my leg with him. He didn't think it was safe for me to walk on it at all. I am super lucky that I haven't fallen on my face. Hopefully, he will have it fixed tomorrow morning. I already miss it.

Heart MRI

This morning started with a small victory: I took a shower and got dressed in less than 20 minutes. I know that is so normal, but it has taken me about 6 months of being an amputee to be able to get ready so quickly. I was mindful of time because my friends Mia and Nicole were picking up to take me to the MRI of my heart at Jefferson Memorial Hospital.

Mia dropped us off at the hospital. Nicole helped me negotiate the hallways and the people with my walker. We got into the radiology department and I started filling out the forms asking the same questions again. Again, I wondered why I can't have my medical information encoded on a bracelet or a flash drive. It would save so much time and reduce so many errors, that it would probably give hospitals extra money, even after the costs of technology. I figure that if financial institutes ethically can use technology in this accessible way, the medical industry can as well.

We waited for about an hour before the radiology technician brought me back. She insisted that I use the wheelchair because I am a "fall risk". Even though I wore clothes with no metal at all, the nurses insisted that I put the hospital gown on top. I laid down on the table while everyone arranged my body. The nurse put some stickers on my abdomen and a framework on my chest. The assistant amazingly caught my vein on the first try to set up an entry for the dye. Then, everyone left the room and I slid into the MRI tube.

It was quiet for a minute and then the crazy, unpredictable banging started. The radiologist repeatedly told me to breathe in, breathe out, and hold my breath as the machine imaged my heart and lungs. The clanging continued loudly punctuated by minutes of silence. I wonder why there isn't noise-canceling technology for MRIs. The radiologist comes to the table and starts dye flowing into the ampule in my arm. I can feel cold flowing through my hand and up to my shoulder. There was more banging and more breathing instructions. Then we finished.

Everyone came back in the room. The nurse took out the needle. I asked to take off the stickers myself, since I get super anxious that they will somehow tear off my skin. I got dressed and found Nicole.

Mia picked us up and I took us all out to lunch. It was pouring out and I felt like I did such a good job of walking steadily.

Now, I get to await the results of the MRI. We'll find out how threatening the tumor nearest my heart is. I christened the tumor Princess Leia because she is a member of the rebellion (cancer) and has witnessed the use of enormous violence to destroy her place of origin (my left leg). Sure, that makes my body the Empire and the Dark Side, but that might just be a matter of perspective.

Tired of cancer

Tomorrow is possibly my 30th chemo since I started last year. I lost count of how many I had during the fall, but it is close to 30. At least 24 chemo treatments were for the sarcoma. I wish it would stop already. I am getting tired of having cancer.

I have had a busy week. I saw Dr. Lax, my rehab doctor, who suggested that I start outpatient physical therapy soon. I attended the amputee support group. I love those folks. I got to be supportive of a newer amputee. I shared how easily fatigued I have been since leaving the hospital. Gerry suggested that I got deconditioned quickly from laying in bed for days. It makes sense, but it is annoying.

I went for a walk today using my crutches and a cane on the sidewalk for the first time. My friend, Candace, helped spot me when I stumbled.

Home from the hospital

I got released from the hospital Friday evening. Ken brought me through a drive-through on the way home. I had been craving fast food since the doctors said that my heart seemed ok. Also, I love drive-throughs. I have never owned a car and find the whole thing so fun.

Saturday, we drove up to North Jersey so that I could christen my nephew Thomas with my brother Andrew. The priests were very accommodating of my walker. They even made me sit at one point, though I know I could have walked around the table. My mother and some aunts noticed that I didn't slather the baby in olive oil, so they brought me oil later to put on Thomas's head to officially become his godmother.

As always, I enjoyed seeing my extensive family and celebrating with everyone. We slept over my parents' house because I was exhausted. I needed to rest.

On Sunday, Ken and I drove back to Philly. We stopped at Art for the Cash Poor, a craft fair/ music event, and visited with friends. I negotiated ramps and grass, which are both way harder than they seem.

This week, I see my rehab doctor, get my heart MRI'd, go to amputee support group, and get chemo. I hope I get to practice walking with a cane too.

Pneumonia and more!

This morning started out rough. I hadn't slept all night. The oncology resident came by at 7am and said they are discussing whether to put me on blood thinners to treat blood clots in my lungs. The concern is blood thinners might make me cough up more blood which could be dangerous, but the clots are also dangerous. Yay! She said that they were planning to ultrasound my leg to find a blood clot there. 

Later, Dr. Rubin explained that some lung tumors died. Some grew. I don't have cancer in any other body parts. 

I had an EEG which showed a tumor right next to my heart. It didn't penetrate the pericardial sac, which is awesome! It did worry the cardiologists, who suggested that they need to find out whether its squishing any surface blood vessels on my heart. They are conferring with oncologists to figure what to do with it. (Sorry, I haven't named that tumor yet.)

Meanwhile, the ultrasound on the leg showed no DVT. The docs will debate whether or not to give me blood thinners.

I feel pretty good. Nicole brought me pajamas and a burrito. Ken and I had a great visit. I even went for a walk around the unit with my prosthesis. The nurses were alarmed by my pulse going up to 140, but it was ok. I mean, I have been very sedentary for a year and I have pneumonia. What do you expect?

I hope I go home tomorrow.

Stupid pneumonia

I am at Hahnemann hospital with stupid pneumonia. I had some trouble breathing on Monday. I was so sleepy that I could barely stay awake. Nicole came by but I was asleep. Ken came by and I was asleep.

On Tuesday, my nurse came and I told her my symptoms. She called my oncologist who said I should go to the ER. I packed up my things and took a cab. I had lots of blood drawn, X-rays, an ultrasound, and another CT scan. The doctors admitted me around 8 hours later.

They have been giving me IV antibiotics today. I feel much better and want to go home.

Walking a half mile,

I don't know my CT scan results yet. Dr. Rubin did not go over them before my appointment with her on Friday. I could get the results from the hospital, but I want her to tell me what it means. I guess I am waiting a few more days.

Yesterday, there was a crazy Italian festival / craft beer festival on my street. I braved the crowds and walked up to Morris street, just shy of .33 miles. I rested at Elissa's shop and walked the rest of the way home. That .5 miles is as far as I have walked in a year! I am so proud of myself.

When I got home, my left shoulder started aching and I had pain when I tried to lay down.I had lots of shortness of breath, too. My oncologist said to go to the ER. So that might be the plan for tonight.

CT Scan

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.

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,

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.

Location:W 16th Ave,North Wildwood,United States

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.

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.

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

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.

Walking news

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.

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.

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.

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.

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.

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.

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.

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.

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.