There Is Hope

I'm guilty as charged when it comes to laundry-listing my trials and tribulations post-transplant. I still have plenty to complain about, but what I'm about to show you is that there is fun, too.

On Monday, I set out for Rhode Island to visit my friends there. I hate to drive, but drive I did, all by myself. My support staff, Marty and Buck, stayed home. I stayed with Patty and Reinhardt Sidor in East Greenwich. He's a Master gardener, and plants every inch of his property with trees and shrubs and perennials. He gave me cuttings to bring home. Patty and Reinhardt love to cook, so I was well-fed in my time there.

Tuesday, I met Jamie Blair for lunch at a a harborside restaurant where I had wonderful lobster bisque. Wednesday night, Claudia Smith took me to Matunick on the ocean, where we shared raw oysters and other fish delights. I met Marcia Gold for lunch Thursday in North Smithfield, and then went to stay at Sue Schweikart's house back in EG.

In between the visiting and eating, I shopped. I'm really not supposed to spend money, but all my purchases were necessary, except for the shoes, which were on sale. I decided to splurge on make-up to disguise my gvh blotches and carvings on my face. I had a makeover and it looked really great. I can almost recreate the effect myself, which is a miracle.

After stopping at Allie's Donuts to buy the best crullers in the world, I headed for Jeffersonville. I had to stop at UPS where a script for Ambien had been sitting for a week. Out in the sticks, UPS is only open Monday-Friday from 4 to 6. They tried delivering it, but my doctor had put my P.O. Box on it so they couldn't. I managed to ration the pills I had. Last night's sleep, in my own bed, with a full dose of the drug was heavenly.

So chin up. There are bad days and good days. Sometimes, lots of good days in a row.

Report Card

After a whirlwind five-day trip, I'm home and feeling great. My oncologist doesn't want to see me for 3 months and I don't want to see him.

I watched my son compete in the Ivy League Championships at Princeton, NJ. He goes on to the East Regionals in North Carolina in 2 weeks. We stayed with my sister and brother-in-law Saturday night and went for Mexican food, it being Cuatro de Mayo. I love mole! Sunday night we had dinner with Roxi and Mike and their daughter Erin at an Italian restaurant in Park Slope, Brooklyn. That night and for the next 3 nights we stayed with Sandy and Dianne in Fort Greene, Brooklyn, our old and remarkably changed neighborhood.

On Monday we rested a bit. I walked with Di to Target. Marty got a Not-Ray's pizza for lunch. Sandy made dinner. On Tuesday we went to MSK for my bloodwork, inoculation (for meningitis,) and to see the doc who pronounced me looking better than in a long time. I even lost 8 lbs! To celebrate all the good news I went to my Korean spa and had the works: manicure, pedicure and a 20-minute massage.

Tuesday night I made Shrimp Pad Thai for dinner. We'd invited old friends Peter and Mecca at the last minute and they joined us for a lovely evening. The topic of soft shell crabs came up and Peter offered to make them for lunch the next day before we headed out of town. He couldn't get crabs but made a lovely fish stew with green salad and white wine. I slept on the car ride home. Must have been the wine.

The Overhaul Begins

I've survived the past month, and although I'm not 100% (who is?), I'm slowly chipping away at some of my issues.

Yesterday I went to physical therapy, had my Vidaza injection at the hospital, and saw a therapist for the first time. I did all the driving!

In the afternoon, I tried on clothing to see if it fit (a demoralizing experience because things I wore a year ago don't fit, plus it takes me forever to clothe myself). I hauled it off to the consignment shop and while I was there, bought a white sleeveless shirt, two skirts and a pair of chinos. I went home and transplanted most of my houseplants (outside, where the weather has been glorious). Then I finally finished the book I've been reading and made dinner.

I managed to stay up until 10:30, which is late for me. As my daughter says, woot!

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.