Shin Splints

With my body finally healing from its digestive problems (all tests normal), I developed a new and annoying issue in my left leg, shin splints. As a former runner, I know all about this malady, which is painful and annoying. To develop it as a broken-down virtual zombie goes beyond irony and, I fear, slips dangerously into hypochondria.

I bought a cane to take pressure off my left leg, and to help my balance, especially as I was attending the Penn Relays in a huge stadium this weekend with lots of concrete stairs. Using a cane has its benefits. We got better seats, lower down and within spitting distance of where the runners entered the track. My leg actually feels a little bit better now.

Today I start another round of Vidaza injections. The true highlight of my day will be a therapeutic massage. It's the only thing that truly makes my skin feel better, and loosens up my tight muscles. That insurance doesn't cover it is another story. 

You've Got to Suffer If You Want to Sing the Blues

We all get our share of the blues from time to time. Depending on our coping mechanisms, it's usually a short-term rough patch from which we arise with little wear and tear on body or spirit.

In my 7-year battle with leukemia, I've certainly had my down moments. When I first relapsed, my doctor prescribed an anti-depressant which made me comatose. After 4 doses, I quit. I didn't need to be paranoid about a medicine that was supposed to give me a lift, not knock me into the gutter.

Things I've found depressing: not being with my kids when I was in the hospital; being tethered to wires; seeing Spring unfold outside my window but unable to smell it. I won't even go into the side effects of chemo because there are drugs for that.

I had a dream last night in which a huge German shepherd knocked me down and took my hand into his mouth. I just laid there, as still as I could be. It was like a test, and how I reacted would determine my fate. The fallout from my transplants, most notably the graft vs. host disease has been challenging. Then there's been the destruction of my tear glands, the loss of 2 teeth, 2 melanomas, cataracts on both eyes. I've somehow weathered these with what I like to think is grace. I didn't moan too much and tried to make light of my infirmities. After all, I know leukemia survivors who have been called to cope with similar issues. And then there are those who didn't survive.

Four weeks ago, I was felled by a stomach virus that would normally have passed in a few days. Because my immune system is compromised, I still suffer from it. You're probably familiar with the feeling: you want to die, but you don't. I wail, I whimper, I want to be comatose. Two days ago I was tested for close to 10 bacterium/parasites. I should know the results soon.

My situation is compounded by financial worries and health insurance Catch-22s. I feel like a burden to my family, although I know that's ridiculous. I'm just trying to be honest here. Today I can't be flip.

I want to thank a dear friend I spoke to today who gave me some useful and sensible advice. Maybe he was that German shepherd trying to direct me to a better place, back to the fearless, confident person I used to be.

Can You Spell Gastroenterologist?

Having always had a lead-lined stomach, the few times my digestive system has failed me are memorable. These episodes, like most of their sort, were nasty, brutish and short. Not this one.

My oncologist was certain I had c-diff, a toxic bacteria that effects immune-compromised people, as well as the very young and the elderly. But it's not c-diff. I now have to see a gastroenterologist, a specialist who deals with the digestive tract.

I'm weak, disgusted and tired of feeling sick. I keep hydrated as best as I can. I'm waiting for a call back from a doctor's office, which now looks like I won't get to schedule an appointment until next week. I've lost a few lbs, which I can afford to lose. I'm drinking Gatorade and taking plenty of potassium. I have an appetite, but eat small portions.

The problem for me is that I'm unmotivated to do much more than watch endless episodes of Law & Order. I first became addicted to the show in the hospital after my 2nd relapse. I realize I shouldn't be so hard on myself, but I'm used to a certain level of achievement each day. Yesterday, I made a banana bread.

I think I'll take a nap.

Hospital Table Pushes Me Over The Edge

My day wasn't going so well anyway. After suffering through a 48-hour intestinal flu, my immune system took a turn for the worst. I didn't eat for 3 days, but once I did, I had uncontrollable diarrhea. I won't try to describe it--who'd want to hear it? After four ugly days I think I'm out of the woods, which is where Marty should have kept me during the ordeal.

I was at the hospital for my monthly Vidaza infusions. By mid-week, the doctor decided I didn't need that on top of my other agonies, and discontinued this series. They gave me saline every day with potassium since that was leaving my body with everything else. Marty went to the cafeteria to get me something to eat. The nurse brought over a narrow table on wheels that can be adjusted for height and used when patients are in bed or sitting in a chair. I took one look at that table and burst into tears. "Are you in pain, honey, asked the nurse?" I chokingly tried to explain that the table brought back memories of my hospital days. It was a trigger that opened the hole into which I'd stuffed mostly negative thoughts about my situation.

Today I walked to the library and checked out the new Joyce Carol Oates book. I'm feeling weak, and I still don't trust my lower digestive system to behave itself, but I'm hoping I've seen the end of it.

7th Anniversary of Diagnosis

On March 24, 2006, I received the worst news of my life. It had been an average Friday. Shortly after I arrived home, the phone rang. It was my doctor telling me I had leukemia.

Are you sure? I feel fine. Yes, I'm positive. A hematoligist/oncologist I recommend will call you as soon as we get off the line.

I'd gone to the doctor two days earlier complaining of a swollen finger. Lyme disease? Rheumatoid arthritis? Blood tests were done, including a CBC. It was the CBC that showed I had leukemia.

The new doctor called and in 20 minutes explained everything I needed to know right then about the disease. My husband walked in during the call and I told him I had leukemia. His face went from disbelief to shock in a second or two. I told the doctor I'd meet him the next day at the hospital.

There were plans to unmake, relatives, friends and colleagues to call. Then I had to tell my kids. Try being a scared, tearful mother putting a relatively positive spin on leukemia. They too were shocked and terrified. They didn't know what to ask or expect, just like me.

In the next 7 years, I would have 10 doses of chemo, 7 of total body radiation, 2 stem cell transplants, 75 units of blood, significant graft versus host disease wherein my donor attacks my body, 15 doses of targeted radiation to destroy a patch of leukemia on my skin, and monthly low dose anti-cancer injections. The injections are on-going for the foreseeable future.

I'm lucky to be alive, although some days don't feel like it. I have a 30% chance of surviving for 5 years post-transplant. Three and a half years down, one and a half to go.

I Painted a Room!

I learned how to paint when I was 16. My father owned an old motel, and the painting was endless both inside and out. This skill would be very useful in the future. In all our houses, except for the ones in Costa Rica), I did all the interior painting. I had help sometimes, but usually I just pumped up the music and rollered myself away.

What does this have to do with leukemia? For one thing, I haven't painted since my diagnosis in 2006, mainly because nothing needed painting. When we bought our house in the Catskills, someone came in to paint the bedrooms pre-furniture, before we moved in. Now that we're living here full-time, we decided to add some color to the back room that overlooks the brook. There are places for stark white rooms, but this one cried out for color.

The first problem is that, as our living room, it has the most furniture in it. Plus it's one of the smaller rooms in the house. First we had to remove the smaller items, and then stack the rest in the middle of the room. Fortunately, the ceiling didn't need painting, the hardest part of painting a room. There's actually very little wall space in the room, which has 3 windows and 3 doorways. That also meant there was a lot of taping around the natural wood frames and moulding, and a lot of painting that had to be done with a brush.

Because my ligaments and tendons are so tight due to gvh, and my muscles are weak, it's a challenge for me to walk, let alone do physical labor. Marty isn't crazy about painting, and the room didn't really need it done, so I felt I had to do my share of the work. After going to yoga Friday and Saturday, I thought, how will my thighs be able to hold me as I rose up and down to paint the trim and roller the walls? My arms are also weak. I surprised myself by working 6 hours on Sunday and 4 yesterday. It's all done except for putting everything back in the room.

A couple of weeks ago, I couldn't have withstood this kind of physical labor. Just re-upping the prednisone by 5 mg has made me feel like myself again, whoever that is.

Ch-ch-ch-ch-changes

I'm in NYC on a doctor tour. On Monday I saw my dermatologist. He was concerned with the path my skin was taking (basically crumbling) and how much pain I was in, especially at night. I have a new cream and a new lotion, plus a pill I take at night called Doxepin. It's too soon to see if the cream and lotion are working, but the pill puts me in la-la land so I have no trouble sleeping. That's good news.

I saw my oncologist Tuesday and he gave me a big hug. We discussed all my concerns and he offered a panoply of ideas to ameliorate my gvh skin woes, from the inside. Some of the treatments would necessitate week-long stays in NYC, which I don't want to do. Plus, I'd have to get a port because my veins are worthless. The idea of a port 3.5 years after my transplant makes me feel sad and defeated. I know it shouldn't, but it does.

We decided to take the simplest measure first, take me off Gleevec and put me back on my old friend Sirolimus aka Rapamune. I'll continue with Cellcept, another immune suppressant.