Wednesday, October 26, 2011

Eat, Run, Love the Dog

Nothing special happened today, although sleeping until 7:45 is pretty remarkable. After breakfast I went for a race walk up to the 103rd Street Bridge to Randall's Island. I had no idea where I was, but I think I was still in Manhattan. The views from the bridge were spectacular. The pollution from the FDR Drive was relentless. I returned via 1st Avenue where I had the chance to check out lower East Harlem.

I didn't really push myself, but I felt really good and strong. I've felt good all day, which is making me wonder if photopheresis was sapping my strength in some way. Tomorrow is the big dressing-free shower.

Then I loved the dog. He's ancient, rickety, and sometimes incontinent, but he's my pal.

Monday, October 24, 2011

Going Off-Line

Today I had my central line pulled. It had been implanted in my upper chest so I could have photopheresis for eight months. Since I quit that, I asked for it to be removed.

The doctor, a cute Puerto Rican named Jesus, had to give me more Lidocaine than he imagined because the line was growing into my flesh. He also had to use a scalpel and clamp to finally extract the Frankensteinian device. My friend Jeff collected me after the procedure and we had breakfast. We stopped to get my new glasses (I can see into the neighbor's apartment across the street and watch their TV) and pick up a chicken for dinner. After he escorted me to my apartment, I took a two-hour nap.

I feel good and my back is healing. I can take a real shower in three days, but a semi-real one tomorrow.

Sunday, October 23, 2011

After the Fall

I'm okay. I did a really dumb thing Thursday night. I was putting the iced tea container away in a cupboard over the refrigerator, retiring it for the season. While I was up there, I saw all the dirt that had built up over the months. I hate dirt. The dumb part was that instead of using a step stool, I got up on a kitchen chair. The first few climbs were easy enough, but my legs wore out and I had little strength left in me as I was climbing up to conquer the last patch of dirt.

I hit the ground with a thump and a scream. Harry was in the room next to the kitchen and came running in. I had already curled up on my side, so I knew I wasn't paralyzed. I assessed the damage: a big bump on the back of my head and terrible pain in my lower back. Harry got me ice packs and stayed with me on the floor. He helped me get up and I sat on the couch for a little while, reading.

It only hurt when I stood up, sat down or climbed stairs. I broke down and took a painkiller, which helped some. It still hurts, and my attempt at running/race walking this morning was unsuccessful. I walked a mile. Why push it?

I was very lucky. I fell on a carpet. I wasn't seriously injured. Harry was there to help me do things. I vow to always to use a step stool and never to clean the top of a refrigerator again.

I write this as a cautionary tale for everyone, but leukemia survivors are at a greater risk for breaking bones and should be even more cautious.

Friday, October 14, 2011

Some Progress

Yesterday, I made the rounds of various doctors in the mission to take some control of my medical life. First stop, ophthalmologist. He confirmed my eyes aren't damaged in any way, wrote my a new prescription for eyeglasses, as well as one for drops to be used at night.

The visit to my oncologist was more interesting. She agreed to having my catheter pulled, which I hope happens soon since I'd like to take a really long soak in the tub followed by a hot steamy shower. Mmm. Catheters can't get wet, and I can't be bothered by the elaborate plastic/ tape job you have to go through, where even less of your body gets washed.

I had requested my records be sent to Memorial Sloan Kettering, so my doctor thought I was leaving. I told her it was just for a second opinion, to get some fresh eyes on my case. I made an appointment to see her in two weeks. She made a good recommendation to me: get a second opnion at Dana-Farber because they specialize in chronic gvh. As you may remember, Dana-Farber is my old stomping grounds. I had my two transplants there and have all the confidence in the world in my doctor, nurses and the staff.

I sent an email to my former doctor at Dana-Farber and asked whom I should contact for gvh treatment, clinical trials and the like. He answered within hours, saying he was my contact. This made me feel like dancing.

On another positive note, my liver enzymes are going down since I've been taking Cellcept, a new (for me) immune suppressant.

Monday, October 10, 2011

I've Had Enough!

I reached some decisions over the past few days. I realized I was mad as hell and not going to take it anymore.

I've contacted a different cancer center and hope to see a new oncologist pending their acceptance of my insurance. I told my oncologist I'm stopping photopheresis treatments and want to schedule having my catheter removed. I've done this treatment for 8 months now, twice weekly, with no measurable benefits. My skin is worse than ever.

I called my ophthalmologist and requested they send my records to the Boston Sight Foundation so I can apply for financial aid for the PROSE lens. My insurance company won't pay for it in NY and there's a chance they will in Boston. If accepted, I'll spend 2 weeks there getting fitted. Since this is the worst quality-of-life issue I face, I plan to push for it.

There comes a time in every chronic illness where you say, that's it. You put your faith in the medical community and believe they'll do everything in your best interests. Now I see that's not necessarily so.

You're fired!

Wednesday, October 5, 2011

Love, Support and Drugs

I woke up this morning and felt almost normal, like I was sitting in the third row of my life instead of the last. I don't think it's related to the nuclear bomb dream I was having last night, where full moon-sized balls were being lobbed over Manhattan. There were no explosions that I heard, but I always dial down the volume during blow-up scenes.

Taking advantage of the energy, I ate some oatmeal and went out for a run/walk. It took me 1:26, but I covered about 4.5 miles and felt great. After showering and video-chatting with Mariel in Peru, I grabbed the shopping cart and walked to Fairway on 86th Street. I was feeling a little low-energy by then but Cliff Bar came to the rescue. If you're wondering, cliff bars are high protein and sugar yummies athletes use to fuel themselves. If you've been to Fairway, you know why I needed one. My arms got quite a workout dragging the groceries behind me as I walked home.

I still feel good and here it is after 2 pm. I'm guessing it has to do with all the love I've received from family, the amazing support my running coaches and blog-readers have given me, and the increase in prednisone my doctor okayed on Monday. I doubled my dose from 10 to 20 mg and for the first time, I'm thrilled to take a higher dose. Naturally, it's not good for the future me (bone crumblage mainly), but it's good for me right now. If it allows me to run more, feel like a real person, and keep me from going off the deep end mentally, I accept the risks.

It's my deal with the devil. I'll get off the junk some day.

Monday, October 3, 2011


Skin cancer was so last week. Today I went to see my internist for a troubling issue that my oncologist doesn't seem worried about: frequent urge to urinate and blood in the urine. So, as with the dermatologist, I took my health into my own hands to see what needs to be done.

I told the doctor the saga of the kidney stone, the pain, the blood in my urine, and an unusual feeling in my bladder that makes it seem like I have to pee constantly. It's different from the Lasix urgency, but added together, I feel I can never be far from a bathroom. She had me do a urine culture and gave me a referral to a urologist for a cystoscopy, a procedure that allows a bird's-eye view of the inside of the bladder. What will they be looking for? Bladder stones, infection, structural abnormalities, foreign objects--I don't want to know about foreign objects, especially if it's my long-dead fetal twin.

Oh, and they also check for cancer by scraping cells from the top layer. I've never had this procedure done, and I'm not looking forward to it. I'll make an appointment tomorrow after I see the skin surgeon.

In the ho-hum category, my oncologist told me to stop taking rapamune (sirolimus) after over two years on the immunosuppressant. I asked if I should increase the prednisone (from 10 to 20 mg.) and she said it wouldn't be a bad idea. She's concerned about the future of my bones, but since my quality of life is currently in the toilet, it's worth trying to see if the increase can help me function like a real person again, not someone sitting in the back row of my life.

Saturday, October 1, 2011

Facing Cancer

I didn't think you'd be interested in hearing about my routine dermatology visit last week, even though the doctor did two scrapings of spots on my face that he deemed suspicious. I haven't been to a dermatologist in three years, which is way t0o long for someone who's had leukemia. Leukemia survivors are prone to developing secondary cancers, and the skin is particularly vulnerable. Two spots that I had thought to be questionable the doctor said were fine. The spots he was concerned with had been dismissed by my oncologist as gvh and a "burn" spot from chemo/radiation treatments.

One thing I've always been thankful for is that my skin gvh has left my face more or less alone. The very first presentation was on my face, but after my Boston doctor upped my prednisone, it went away and never came back. When I left the dermatologist's office, I had two small band-aids on the scraped areas. When I removed them the next day, they were raw and ugly. Both have healed nicely though, the larger spot looking like a mole, but shrinking every day.

The dermatologist called yesterday with the biopsy results. The larger spot (thought to be gvh) is a basal cell carcinoma; the smaller, melanoma.

Back in the good old days, before cancer walked in the door, I'd had a basal cell carcinoma removed from my shoulder. My dermatologist at the time calmed any fears I was having (I had a few) and assured me that this wasn't going to kill me. When I received my leukemia diagnosis, I was too stunned to feel much fear. The real fear came when I was told I'd relapsed.

So the cancer on my face is more of an annoyance than anything else. Even the melanoma is very fresh and once removed, will be gone for good. I'm not looking forward to having surgery on my face, only because I'm vain. My dermatologist assures me that the surgery I will have, called Mohs surgery, works very well on the face because they shave thin layers off and get the biopsy results back almost immediately. They cut and biopsy until there are no cancerous cells, which means less tissue is lost.

I meet with the surgeon this week. My feelings are mixed on this newest health blip. If nothing else was wrong with me, I'd just chalk it up to something most of us will face as we age, another chink in the armor. My armor is in shreds.

Visit your dermatologist once a year for routine check ups. If you suspect something, don't wait for that yearly screening.Just go.