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.