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.