Down But Not Out

Last Wednesday, I packed up the pieces of what had been me and went to see Dr. Shore, my oncologist. The only time I'd felt worse than this was during chemotherapy or transplant. I was so unsure of my psychological footing that I brought my friend Jeff along for cognitive and emotional support.

On the blood front, white cells are normal, reds are rising and platelets are falling a bit. I don't have leukemia. But I'm experiencing a significant flare-up of graft versus host disease. Mr. Donor's lymphocytes are giving my organs a hard time, targeting my skin and liver in particular. I'd been looking forward to ending my rocky relationship with steroids, but instead of finally throwing the bum out for good, I'm increasing my exposure from 5 to 20 mg daily. It's demoralizing.

After explaining why she wasn't happy with upping my dose, Dr. Shore suggested I consider a treatment called photopheresis. This is a non-toxic way to handcuff lymphocytes, but it's time-consuming in the extreme. I would have to go twice weekly for six to twelve months. I would be hooked up to a machine for four to six hours, have my blood sucked out of me, lymphocytes isolated and irradiated with ultraviolet light, and then have my blood pumped back into my body. All the sucking and pumping will probably collapse my veins in no time, so I would have to have a catheter inserted in my chest, which makes treatment easier but life harder. Back to line-flushing, dressing changes, possible infection, problematic showering and the creepy feeling you get from have tubes protruding from your body.

Obviously, this is something to chew on a bit. Dr. Shore told me to think about it and call her with a decision because she has to get the approval of my insurance company first. It must cost a fortune. Thankfully, an Arizona politician won't be deciding my case.

I just want to put all this stuff behind me and get on with my life but I can't. Rolling Stones tunes keep popping into my head: Shattered, Emotional Rescue, Mother's Little Helper, 19th Nervous Breakdown.

To ward off the latter, I'm taking the pharmacological route: 20 mg. of Celexa daily.

My Heart's Not Broken

I'm unraveling like a cheap sweater.

I saw the cardiologist today. Basically the old ticker is doing okay. Some slight "damage" but it's not broken in any serious ways. He didn't feel it was the cause of my water-retention, but advised me to stay on the Lasix until further notice. I don't have to tell you that taking a diuretic everyday is no picnic. But I guess it's marginally better than feeling like my skin is on too tight. He recommended I take a 24-hour urine test to check for protein and creatine, which could explain my muscle weakness. Or it could be inconclusive.

Wednesday I see my oncologist for a routine check-up, and will ask her about the urine test. I've started a laundry ist of symptoms because I don't want to forget ANY of my current complaints. What the hell is a laundry list anyway? You can research that on-line if you care. I took a peak at where the phrase comes from, but I'm language-obsessed.

Echocardiogram Results

The results are in: I do not have conjestive heart failure. But I do have two abnormalities that I need to discuss with a cardiologist. I asked my internist two questions: Are these issues related to transplant. Answer: Yes. Do I have to restrict my activities? Answer: No. I have an appointment on Monday.

Skin eruptions, muscle weakness and tightness, edema, liver problems, no thyroid function, dry eyes, sky-high cholesterol, cognitive issues, anxiety, depression. This is what I live with post-treatment for leukemia. 8 rounds of chemo plus transplant prep that included total body irradiation. There's no telling what might pop up next.

What's a 100-year old woman to do? Embrace the blues, as in the music. I've been listening to a lot of jazz lately and find it soothing.

A week in Paris could ease the pain of it.
All I care is to smile in spite of it.
--From Lush Life by Billy Strayhorn

I wonder if I could appreciate Paris in my current condition. A crunchy baguette and sumptuous pastry just might do the trick.

Why I'm Here

Sometimes I wonder why I've survived thus far. Good doctoring, the bottomless love and support of family and friends, my relentless nature? Beating a dead horse is a specialty of mine. It runs in my family. Our motto: never let it go.


Did leukemia take a powder due to my endless bitching about despising the disease. Even wicked stem cells must reach the point where they can't stand their inhospitable host anymore. Why won't she just shut up/give up already? We could mount another attack, but man, she's toxic. What about that radiation she willingly subjected herself to mow most of us down? Like a suicide bomber who miraculously survives the explosive device, she walked away with just a few burn marks.


I was reading today how the government is going to try to educate the public about what to do in the event that a nuclear bomb explodes nearby. The concern is that people will panic and do the wrong thing, which is to flee. What you should do in the event that you're not vaporized or turned into a krispy kreme donut? You should stay in your car, if that's where you are. Stay in your house/apartment/work location for several hours while the radiation radiates. This requires an equanimity many of us don't possess.

Here's what I'm going to do if The Bomb spares me. I'm going to make an extra dry Beefeater martini straight up and I'm going to party my brains out. Or what's left of them.

"Heart Failure"

Don't panic. I don't have heart failure, at least not yet.

So I go to my internist today due to ongoing water-retention issues, especially the Popeye arms. The doctor, whom I don't care for, asks when was my last echo-cardiogram. I say August 2009 when I was in the hospital for my transplant. He says: I'm going to send you for one due to the possiblity of heart failure. I probed a little deeper. Are you referring to congestive heart failure? Yes.

If I were a doctor, I might say something like this: Let's do an echo-cardiogram to rule out any possible heart issues. I wouldn't blithely toss out the phrase "heart failure" to a patient who's obviously dealing with some challenging medical mysteries such as sudden sky-high cholesterol and an iron-laden liver. I fully expect him to say something like, Patricia, you are going to die someday. Thanks for reminding me. Is there a test for that?

This is the same doctor who responded to Marty's complaint about headaches with: I'll give you a referral to a neurologist to rule out a brain tumor. We had a good laugh over that one.

So I have to find a new doctor. This one's clueless, and although he might be a really good physician, he gets my goat.

Mirror Mirror on the Wall

WARNING: Contains harsh statements. Humor has not been used to soften the truth or otherwise entertain.

I consider myself a moderate when it comes to vanity. Always in fairly good physical shape, and born with the kind of metabolism that lets you eat whatever you want and not gain weight, I've always looked good in clothes, and was able to wear certain timeless items for many years. I have a pair of pants that go back at least 20 years, and I may wear them to a party tomorrow if the excess water around my midsection cooperates .

My hair was always thick and healthy. I've worn it very short for a very long time because I never want to use a hair dryer ever again. Now I have someone else's hair, and I don't know what to do with it.

The skin on my face was always better than average, a little freckled but soft and smooth with no wrinkles. Overall, I looked younger than I was, a nice perk when you hit middle age.

Unfortunately, in addition to hitting middle age, I also walked straight into a ghastly disease that wreaked havoc not just with my insides, but my outsides, too. Weight loss and hair loss turned me into a POW, repeatedly. Thankfully, these were temporary conditions.

But chemo, it seems, has left some ugly marks on my face that aren't going anywhere. A fellow transplant patient and friend recently posted on how she feels about her appearance. Another posted about the classic moonface one develops on steroids. We try to be upbeat and season our posts with self-deprecating humor. Laughing is better than crying, I suppose.

Well, I'm here to tell you that I only look in the mirror when I absolutely have to, and then I try to focus on the specific parts that needs attending to, for instance, my teeth. In addition to a HUGE brown spot on my right cheek (chemo burn), I have an overall uneven skin tone, with red blotches smeared here and there from my hairline to my cheeks to my nose. Actually, my nose is okay. To add insult to injury, my face is covered by what looks like pale fur. At least I've lost the moonface, the steroids almost behind me, for now. I suppose I could apply gobs of pancake makeup to my skin and hope I don't look too garish. But I've never really worn make-up, and like the short hair, I've always taken every possible shortcut I could on the road to Beauty. It's not that I'm trying to ignore aging and the ravages of time. I'm trying to ignore how quickly I made the transformation.

Somebody's out there's thinking, oh, but beauty's only skin deep. Inner beauty is what counts blah blah blah. Excuse me, but do you live in America??? Somebody else is out there thinking, hey, it's great you don't have leukemia anymore and survived to grapple with the fallout. I actually tell myself this a lot. But it's starting to feel questionable as a way to cheer myself up about the many deficits (physical and mental) I face. Sometimes I feel like I've survived the Apocalypse only to find myself wandering in a Nuclear Winter waiting for the next weird/ugly/uncomfortable event to threaten me and make me wonder where this all ends.

Feeling Flu-ish

The Thanksgiving weekend in the country was wonderful. It was great seeing the kids; hearing how Harry is taking a computer programming class next semester so he can write a killer app, quit school and make millions; and listening to Mariel and Mark come up with ways to improve public education. This generation needs all the good ideas it can get.

Last year, I ruined the turkey. This year, I was back in form, and all my traditional dishes, including the bird, were yummy.

The low-dose lasix did its job slowly, so I felt much like a stuffed turkey for most of the weekend. All was well until about an hour after I returned to NYC with Turbo. I began to feel awful, like I'd been hit by a truck. I got into bed, shivering. The next day I had a doctor appointment to assess the water retention. When the doctor took my temperature it was 102.7. He thinks I have the flu even though I had a flu shot. He sent me for a chest x-ray, and gave me a prescription for Tamiflu. I feel much better now.

For the first time in a long time, my thoughts went to the Dark Side. The leukemia was back and the flu was proof. Of course this makes no sense, unless you've had the disease and it's taken you completely unawares in the past. Then, any little sign can set you off. Many of you know what I'm talking about.

I popped an ativan and went to my second doctor appointment of the week, to my oncologist. I was a Dead Woman Walking. When she read my blood counts, which were fine, the Grim Reaper turned and walked away, searching for the crosstown bus. The iron unload continues. I was at 8000 units and am down to 4000. 300 is normal. Prednisone taper continues.

I asked my doctor what she thought about me working full time. She didn't think it would be possible right now. She's right of course. If I had a job, I'd have been fired.

So, I'm fair. That's what my grandfather always said in response to inquiries about his health and well-being.