Strange News

I just got word that my first husband died last week. His obit:

Mr.Rodney S. Hill, 57, of Anderson, SC, formerly of Dover, DE., died Tuesday, July, 17th at the M.D. Anderson Cancer Center in Houston, Texas. Mr. Hill lost a long and courageous battle with leukemia with his family and best friend Robert Van De Visser of Denton, Maryland by his side. He was a 1967 graduate of Dover High School and served six years in the U.S. Army Reserves. He was a 1977 graduate of Delaware State University and former Chief of Right of Way of the Delaware Department of Transportation. Mr. Hill most recently retired from Earth Tech Consulting, Inc, where he served as a Program Manager. He was son of the late Rodney S. Hill, Sr., and is survived by his mother, Daisy Hill of Dover, Delaware; his wife of thirty-four years, Barbara; his sons Brian and Blair; his daughter-in-law Jessica; his beloved grandchildren Savanna, Carson, Chase, and Alli; and his brother Rick of Dover, Delaware. His family will hold a private service to celebrate his life. In lieu of flowers the family asks that memorials be sent to The Leukemia and Lymphoma Society, 1247 Lake Murray Blvd, Irmo, SC 29063.

Why Are You So Tired?

How tired can you be? Let me count the ways. I've been paying more attention to this topic lately.

1. Too Many White Blood Cells (aka leukocytosis) - A deep, cosmic fatique. Sleep is more attractive than sex, food, or any kind of entertainment. Night sweats sometimes interrupt that sleep. Which means extra laundry in the morning.

2. Not Enough Red Blood Cells (aka anemia) - You feel like you're wearing lead boots. The smallest muscle twitch is a workout that makes you breathe hard while your heart pounds. Digesting your dinner is hard work. Taking a shower can seem like an Iron Man triathlon. You're exhausted, but not really sleepy, and anyway sleep is difficult, due to the freight train in your ears (sound of your heart pumping harder to get the few remaining cells to circulate a little more.)

3. Your Body Is A Superfund Site (aka chemotherapy/radiation) - When the nurse tells you to protect the rest of your household from your bodily fluids, which are now carcinogenic - you gotta wonder . . . Everything tastes weird, smells weird, and feels weird. It's purple haze time.

4. If This Is Tuesday, This Must Be the Infusion Clinic (aka not enough hours in the day) - suddenly you have a calendar more complicated than a celebrity's, with 8 to 12 new drugs, all on different schedules; appointments with doctors, therapists, labs, clinics, and sometimes lawyers, banks, and insurance representatives.

5. Thinking Hurts. Can I Stop Now? (aka too much new information) - Like cramming for a test, in a foreign country, in a language you don't know, under a deadline you're not sure of, and if you flunk the test - the penalty is great bodily harm, or death. Just zoning out is a great, but feared, temptation.

6. I Don't Like this Cancer Game, Can I Go Home Now? (aka depression) - A zombie takes over your body. It just wants to sleep, when possible, or simply stare at the ceiling, while you remember the life you used to have.

7. The Combo Plate - pick any three of the previous items and throw in an infection, just to keep it interesting.

Half Way Through

Today's chemo was the half-way mark (end of the third monthly session, in a six-month course of treatment.)

This week's experiences at the HMO clinic were discouraging. It's difficult getting info from these folks. You see a different caregiver each time, and you never know who it's going to be. They don't seem to communicate with each other very well. And some days, like today for instance, we get to the designated clinic at the designated time, and no one is at the reception desk. Well, this is not unusual, and the waiting room is full of other patients, so we just take a seat and wait. And wait. More patients arrive. Soon we start comparing notes:
"When was your appointment?"
"Ten minutes ago, and yours?"
"Now."
Then Dave heard the sound of a dot matrix printer, coming from somewhere else on the eighth floor. He went off to investigate and came back with the news that everyone was supposed to check in at the other clinic on the other side of the building. So everyone gets up and troops over there. Dave goes in for his infusion. More patients arrive at the first clinic and start waiting for the non-existent receptionist. This happens frequently. When you see an empty desk, you can never tell if they just stepped away for a bathroom break, or for lunch, or if they're on vacation.

This last round of chemo was harder on Dave than the previous ones. He spent most of Friday in bed (after we got back from the hospital.) I'm not sure what's going on with his blood work because we have not been able to get a copy of the last two reports. I'm not sure what the plan is for his treatment/medications, because no one could answer those questions. I finally got an outside source to answer my question about Dave's CBC from last week - the blood showed, "many lymphocytes with cytoplasmic projections which appear like hairy cells." I was concerned about whether Dave might have Hairy Cell Leukemia. Dr. Terry Hamblin from the acor CLL forum, said that this happens sometimes, but Dave's profile still looks like CLL.

So I was somewhat relieved. But I'm still worried about other stuff. Like, shouldn't they be cutting back on the ProCrit now that his Hct is near 30? (That stuff has some potentially nasty side effects.) And wouldn't it be a good idea to give some more B-12 since it had such a good effect? And how bad is his WBC now (it was climbing into the stratosphere on Tuesday)? We only see the doctor once a month, and the other so-called "avenues of communication" are useless. Right now I'm feeling too worn down to muster the energy to be the kind of pain-in-the-ass that gets her questions answered.

Dave's still looking pretty good:

Quick & Short

Just a brief update to let you know that Dave IS getting chemo this week. His bloodwork on Tuesday looked better in some ways - at least the Red blood cells were up. More bloodwork was done yesterday before the chemo was infused, and he's due for more chemo today and tomorrow. I'll write more this weekend.

Needle Time

OK, new week ahead. Blood tests on Tuesday, then (maybe) chemotherapy to follow. Depends on whether Dave's anemia has improved, or in other words - does he have enough Red Blood Cells to tolerate the intravenous "draino" (Dave's term.)

He's been getting weekly injections of ProCrit and daily injections of B-12 vitamins. Good thing he's not phobic about needles.

In fact, this morning Dave announced that when he goes into remission, he intends to get a tattoo! He wants me to design an image of a Phoenix in flight, carrying a Nikon in his talons.

Speaking of needles . . . last week, we bumped into our friend Jane at the lab. She was also waiting to have some bloodwork done. As a more experienced patient, she gave the Dave the low-down on students versus experienced phlebotomists (don't let the students draw your blood, when you're getting stuck every few days and your veins are getting harder & harder to find.) They both got called into the back at the same time, and a student came up to Jane, who politely asked for a regular staffer. So the student moved over to Dave, who was thinking about what to say and how to say it, when they heard Jane calling out from the other side of the curtain, "He doesn't want a student, either."

He must be part Sherpa

Dave is extremely anemic now but he still manages to walk up the hill to and from the hospital, and up & down the stairs at home, with just minimal shortness of breath, and no complaining.

We got to the hospital today and were told that his chemotherapy was canceled for the rest of this week, because his blood counts are too low. As of yesterday afternoon:

WBC 7.5 (and climbing again, after a low of 6.5)
RBC 1.67
HGB 6.5
HCT 19.5 (and dropping rapidly)
Platelets 131

He now has Autoimmune Hemolytic Anemia, so they have started him on high-dose Prednisone. He goes back next week for more blood work and (maybe) more chemo.

(Image is Ang Dorjee Sherpa celebrating his 8th summit of Everest - by Alan Arnette)

A Quick Update from Dave

This is Dave, dictating from the easy chair:

I consider today's clinic visit a victory. My doctor straightened out the medication issue with a hand-written prescription to the pharmacist. She was as upset with the situation as we were. While yesterday's blood tests showed that my anemia is a bit worse, I actually feel better than I have in months. While the anemia is a concern, my doctor is taking extraordinary steps to get to the bottom of this issue and remedy it. I do have confidence in my doctor and today Anna expressed the same. It is this HMO system that we really have to work like a dog. We're figuring it out as we go, and it's good to know we have the doctor's full support. I continue to go to work regularly. I'm still photographing. At worst, I just have to take things a lot slower.

It doesn't take much to elevate the stress level. And I suspect it will remain that way until I'm through this round of treatment, which will end in October. Anna seems to feel the stress sooner and more intensely than I do. I think all her years as a nurse have skewed her perspective. Which is understandable, but sometimes too much information can increase anxiety. For example, I once met a guy who worked on the construction of BART's Transbay Tube. To this day, he refuses to ride BART. Now, do I really need to know that? So I am really working at ways to reduce Anna's stress and anxiety.

The bottom line is - things are going pretty darn well. And though there will be frightening moments, the future is looking bright.

Warmest regards,
Dave

Three Little Pills

(So, you might be wondering what happened with the Famciclovir prescription? Long story. I'll spare you details, but we managed to squeeze THREE PILLS out of them - enough to give Dave his regular doses for today and tomorrow morning. Tomorrow afternoon the doctor has to justify the use of this drug with the HMO, before they will agree to cover any more of it ( the HMO would prefer that she choose something cheaper.)

I've spent about 40,000 hours in hospitals - mostly as a nurse, but also as a patient and as friend/family of patients. And the most important piece of advice I can give anyone who needs to enter a hospital (inpatient or outpatient) is this:

Do not ever, ever cross the threshold of a hospital entrance, unless you have a buddy with you.

It's a dangerous, mind-bending universe unto itself. Trust me - you will need help.

(Image: "Modern Master Dissipation" by Andy Diaz Hope - made of an archival photo, cut & stuffed into gel capsules - see it at Catherine Clark Gallery in SF.)

Round 3

Tomorrow is the first day of this month's "chemo week." Dave has chemotherapy treatments once a month and this is the third month/treatment. Each treatment regimen goes something like this:

"Week 1", Monday - lab tests to see how his liver, kidneys, and bone marrow are holding up to the chemo.

Tuesday - the doctor physically examines him to check on the condition of his lymph nodes, liver, spleen, and so forth. Then she orders the treatments for the next few days.

Wednesday, Thursday, Friday - Chemotherapy infusions and any other treatments the doctor orders.

Saturday & Sunday - Sleep.

"Week 2", Monday - Dave thinks about going back to work, but usually decides against it.

Rest of "Week 2" - Dave slowly returns to work, for short periods.

"Weeks 3 & 4" - Dave's appetite and energy slowly return, or not. Lymph nodes swell up, and then go down. Night sweats come and go. Various other symptoms unexpectedly appear on stage, spread a little terror, and then fade into the wings. By "Week 4" he can finally eat a little bit of tomato sauce, so he gets to have his favorite Italian and Mexican dishes once or twice, before the next round of chemo puts him back on a bland diet.

Then it's time to start the whole thing over again.

Although this is the third cycle coming up, it hasn't quite reached the point where it could be considered routine. Last month, the anemia and ProCrit injections were the big new thing we needed to adjust to. This month, who knows? If the anemia hasn't improved, he may need a blood transfusion. But I can tell you what I'll be doing first thing Monday morning - fighting with the HMO over Dave's medication coverage. Theoretically, his insurance has drug coverage, with a $10 co-pay. In practice, they seem to make exceptions to that plan whenever they feel like it (sometimes they charge $28, sometimes $65 - if there's any rhyme or reason to these figures, I haven't discovered it. And he's on 5 prescription drugs - so far.) The latest problem is the Famciclovir - a drug that fights viral infections. Dave has been taking it since the first day he started treatment, and he is expected to be on it for the next 6 months, maybe longer. This is a life-or-death kind of medication. He called the HMO pharmacy last Thursday, per their policy, to notify them that he had 24 hours supply left. They said he had no refills ordered. Wrong. Twenty-four hours later (on Friday), he had no Famciclovir left, and we were still arguing with the pharmacy. So Dave went to the Oncology clinic and talked to one of the nurses. Dave's doctor wasn't available, but the nurse got another doctor to write a new prescription for the Famciclovir, then he went back downstairs to the pharmacy. After the usual eternity in the waiting room, his name came up on the board, and he went to the counter, where they told him his drug was ready - and he owed them $462! He argued, he pleaded, but they were unmoved. Of course, by now, the clinic was closed for the weekend, so he came home without it.

After I got the news, I spent the next few hours thinking I was going to be a widow sooner rather than later, but eventually I got past it. We hunkered down for the weekend, in extreme infection-avoidance mode. Tomorrow I go into warrior mode.

Stay tuned . . .

(Image is "Kali" - a painting I did in 1996.)