I should have paid more attention ... (whine)

when the nurse who gave me the shot yesterday asked, "You do know to take Tylenol with this, don't you."

It hurts to chew. Anything. I didn't think the skull bones produced a lot of blood cells.

When I was in the hospital the first time my blood was checked every morning and, depending on the results, I was given a short-acting shot to boost my neutrophils. That doesn't work when I'm at home.

The shot yesterday was a bigger, long-lasting version of the same drug, bound to a carrier chemical.

And I can tell that my red cells are gone. I have the pounding in my ears that I had the first week of January; I'm cold and mentally foggy.

I'm going back to bed.

The next adventure...

In twelve hours I start the next phase of this adventure, semi-outpatient chemo.

If my blood counts are high enough I'll check into the hospital tomorrow morning. I would expect them to start the chemo pretty soon after that; it will take about eight hours. I'll stay overnight, then be discharged around noon.

I just learned today that I need a follow up treatment the following day. We're hoping to be able to take care of that on the same trip. It's in an outpatient clinic at the same hospital. Maybe.

There are a lot of unanswered questions, this first time through.

I'll be offline for the next two days.

Status

My first week home from the hospital was spent establishing a routine for my meals and medication. That took all of my time and energy.

Last week I turned my attention to preparing for my next session of chemo. I had a lot of help at home, which I greatly appreciate. I got the food under better control, especially after Meals on Wheels delivered ten frozen meals on Friday. (I still prefer my own cooking.) I began to accomplish things not related to food and drugs, but much less than I hoped. I also made progress regaining my strength, although stamina is still an issue.

And I lost most of my hair.

I am scheduled to start my next cycle of chemo on Wednesday, February 11. I'll stay at Banner Good Sam overnight, barring complications. When I return home I will be under the most strict limitations, as the drugs destroy my immune system and leave me vulnerable to infection. I don't know how long that will last.

Since I haven't been through a cycle of outpatient chemo, I have a lot of unanswered questions.

"Heavenly Father knows what I need, and He knows when I need it."

That belief got me through my hospitalization. It got me through anxiety about managing at home. It got me through worries about how to pay for this cycle of chemo. I'll be okay.

Life is good.

Next round...

I am scheduled to start my next round of chemo on Wednesday, Feb. 11, 2009.

If all goes according to plan, I will have an appointment at my doctor's office that morning, to ensure my numbers are high enough to start chemo. They will send me across the street to the hospital. I would expect them to start the chemo pretty soon after I'm in my room. I'll spend the night and come home the next day. I don't have any details on how long I would be there the next day.

Hair loss...

When I washed my hair Sunday I was surprised by a cascade of strands. It came out easily, but only if I ran my hands or a comb through my hair. The process has continued. If I run my hands through my hair I come away with handsful. Totally painless -- it just ... comes out.

Good thing I'm not vain about my hair!

I now leave a trail unless I wear a bandana. Ok. It's just a little trail. And I wake up with hair in my face and all over my pillow.

When I have some spare energy I want to sit in the bathroom and brush it all thoroughly, to get the loose stuff out.

Brief update

After consulting with my insurance company and doctor, we have decided that I will receive all of the chemo as an inpatient, overnight. The co-pay is lower, and there are medical reasons supporting the decision.

Sigh. There was something else I wanted to post. Maybe I'll remember later.

What's next?

3pm: update at bottom

Status

As far as the leukemia goes, I'm healthier than I've been in a long time. I feel good. I finally seem to have gotten rid of the water weight from the steroids. I'm regaining my strength and stamina. My vision seemed to have changed while I was inpatient. It might have been a side effect, or it might have been never looking more than ten feet ahead; that seems to be improving today.


Treatment

I've completed the first of six rounds of chemo in this treatment cycle.

That accomplished the goal of destroying and flushing out the defective lymphocytes that were overwhelming my system. We put out the fire.

I need five more rounds to suppress the cells that are turning out bad lymphocytes in the first place. That will be seeking out and suppressing any hot spots.

Each chemo treatment will destroy my immune system, so for the next four months I will cycle between feeling great and having few limitations and feeling awful with many limitations. We don't know to what extent the side effects of the treatment will return. Although we don't expect them to ever be as bad as the last two weeks, we can't guarantee that. I may require hospitalization again. Because of my underlying auto-immune disorders I will almost certainly require red cell transfusions every cycle.

Each cycle will consist of a treatment, a period when my blood counts are falling, and I am most vulnerable, a period when they are rising, and a recovery period until the next session.

My next session is scheduled for next Wednesday, February 4, 2009. Now 2/11.


Game plan

I have a lot to do this week.

I left the hospital with more medication and protocols than I've ever dealt with. I need to establish routines and a tracking system to ensure that I protect my health and get the full benefit of the treatment. I need to become confident as an insulin dependent diabetic. I need to establish a little clinic area where I can organize my new supplies and assess and track my status, so that, when I'm sick and vulnerable, I can recognize the need for intervention right away. And I need all of these in place before my next treatment.

While I was in the hospital my friends did an absolutely amazing job of damage control. They removed the garbage and fresh food, washed the dishes, took the laundry home and returned it, took things to me in the hospital, brought them back with me. I cannot imagine how different yesterday would have been without their help, but it wasn't obvious where everything lives. I need to put things away.

The week before my admission I spent most of my time in my recliner. I felt well, but I had absolutely no stamina. (Funny what the absence of red blood cells will do!) The six weeks before that, as I dealt with increasing fatigue, I left routine things undone. I need to clean up and put away things I left lying around during that time.

Then there's the mail. Piles of mail. Bags of mail. Some of it is probably important. And I need to set up a system for the many, many bills I expect to receive.

None of that even touches recovering from the involuntary "upgrade" to my apartment last July. My office is unusable, but as my strength failed, that just wasn't at the top of the list.

More important than those last two, however, is the need to rebuild my general strength and wellness. Between the problems from my neck injury and the fatigue of the leukemia, I've lost a horrendous amount of general conditioning and fitness. My neck is fixed, the leukemia is being treated...I need to begin reclaiming lost ground.


So here's my plan

I've laid this all out, hoping to answer the questions many of you have about the next few months of my treatment.

I plan to spend today and tomorrow establishing the physical space and routines for my medical needs. I will begin incorporating a general fitness program, as well.

I plan to spend the rest of this week putting things away.

I plan to spend early next week putting things in place for my next treatment cycle: clothes, food, etc.

And I don't plan to spend a lot of time here.

We'll see how it works.

Update: It doesn't. The kitchen needs to be done first, so that I can easily prepare meals, and everything is going to take longer. I've had to go back to preparing meals as I did when my neck was bad, one step at a time, sitting down. When I was only halfway through preparing lunch, at 2:30 pm, and exhausted, I ate last night's leftovers.

About that neutropenic diet...

Yuck!

How can anyone consider a diet that prohibits all raw produce except bananas and oranges healthy???

Four months without romaine? Carrots? Parsley? Greek salad? Fruit smoothies?

neutropenic diet link

Well, that list adds grapefruit and melon, but bans salad bars for one year. No more Sweet Tomatoes?

By the way...it turns out that there is no evidence that this diet is necessary, just so-called common sense and institutional practice. (If your boss prescribes a neutropenic diet....)

Watchful Waiting

My sister doesn't think much of "watchful waiting" as a treatment for cancer. Or rather, as a non-treatment for cancer, which is her point.

The form of cancer that I have, chronic lymphocytic leukemia, can be treated, but, at this time, not cured. I plan to live with it for a long time. The doctor explained that I have a fairly mild form of the disease, and she'd rather save the treatments that are available for when I need them more.

That's in addition to the fact that the available treatment is chemotherapy. Chemo is hard on the healthy cells as well as the defective ones. Do I really want to go through chemo in order to avoid needing a nap every day? Uhh, no.

That does not mean, however, that we're doing nothing.

The better able my immune system is to fight the cancer cells the longer we'll be able to postpone treatment. Also, the excess lymphocytes are defective, and don't fight infection very well. I therefore need to:

• avoid potential sources of infection.
• avoid anything with the potential to weaken my immune system.
• do everything I can to strengthen my immune system.

There's actually quite a lot that can be done to strengthen my immune system. I'll explore that in another post.

Also, Traditional Chinese Medicine considers leukemia to be a result of unresolved resentment. Western medicine might not put it in those terms, but there is increasing recognition that there is a strong relationship between mental and physical health, that runs both ways. Depression, in particular, has repeatedly been shown to suppress the immune system.

There are a couple of issues that I've been avoiding dealing with. They are difficult to the point of being traumatic. They have been a source of serious, ongoing, stress, one for more than two years. Apparently, it's time to do something about them.