This hasn't been a good year.

Well, I'm home. Again.

I was in Banner Good Sam from Apr. 15 to the 28th. The preliminary diagnosis was pneumonia, but it was really the "weird respiratory thing" I've been complaining about since February. I should never have left the hospital without resolving it the last trip.

But, it wasn't pneumonia, either. It was pulmonary edema, complicated by some other things, plus another round of renal failure.

More later...

More new experiences...

Ok, maybe I wasn't whining, since three hours later I was on my way to the ER. I'd never been to Tempe St. Luke's before.

While there they drew blood. The doctor wanted to either admit me and start a transfusion or transport me to Good Sam; I said I'd let my oncologist make the call. I faxed her the lab results and that afternoon I was back in Phoenix having more blood drawn for a type and cross-match for the transfusion I had yesterday.

And today the problem that sent me to the ER in the first place is back.

I am greatly blessed. I have friends that I can call at 3:45am. I have friends who have helped me at home, and with rides, prayers and good wishes. I'm thinking more clearly since the transfusion.

There's a downside to that. Now that my brain is working I see things I want to get done and can't, due to the other issues.

Heavenly Father knows what I need and He knows when I need it. The day before I went to the ER my friend had said to me, "Now, you call me if you need anything, even if it's at night." And when I did call, she had been awake for about a minute, even though she didn't need to get up that early.

Still whining...

Following the first chemo, in the hospital, I had about five days of feeling pretty good (other than needing a transfusion), then things started blowing up.

Since the second chemo I've been fighting this respiratory thing, and now new things are blowing up.

I'm due for a CBC today, Thursday. I expect to learn the results this afternoon or tomorrow.

I'm not sure how much sleep I'm going to get.

Whine

No one said it would be easy. (whine)

The fever broke about 9:30 Saturday night.

I've spent two days with a respiratory infection, not really sleeping, not really awake, trying to force clear liquids.

A friend came over, did damage control in the kitchen, made me Jello and will bring soup tomorrow.

I've decided that the anemia is not as bad as I thought it was on Friday. I may still get blood drawn on Monday instead of waiting for Thursday.

Marie: It wouldn't have been a lot different if you were here. Other than emptying the dishwasher, which is what kept me from putting the new dishes in the dishwasher, there's not much you could have done other than watch me sleep and worry about me.

As soon as I finish this batch of liquids it's back to bed.

Roller coaster...

I didn't fully appreciate the extent of the ups and downs I would experience after chemo.

I'm tired. I'm cold. I can't think clearly. I hurt in places I didn't in the hospital.

I'm back to having trouble putting a balanced meal on the table and cleaning up.

Lunch is over; back to bed.

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.

I'm home!

I had another very positive experience. The inpatient chemo went very well. I received one drug that they chose not to give me while I hospitalized, because I was so sick. They administered that one very slowly, in case I reacted badly, but it was fine.

I was discharged to the outpatient unit where I got the shot I needed. I found it a bit unsettling that there was a long list of possible side effects that would require calling 911. It's been about 12 hours, though, and I seem to be fine.

I was home by noon.

I'm very tired. I had to remind myself that I may become more tired this week, as all of my blood counts plummet.

Purell is my friend. I'm neutropenic now -- not enough neutrophils -- and am vulnerable to infection. I picked up my planner and thought, I had that with me outside ... I touched it when I wasn't worried about infection ... it's on the floor.

The apartment is full of things that I last touched when I wasn't worrying about bacteria.

The Purell is within arm's reach.

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.

Hair today, ...

I participate in a scrapbooking challenge, 52 Blessings. Today's blessing is lack of vanity.

When dark clouds of trouble hang o'er us....

I woke this Sabbath morning to heavy gray clouds and rain.

As I ate my breakfast 45 minutes later I noticed that the rain had stopped. The sun was beginning to break through the clouds. The crowns of the palm trees across the street glistened against the backdrop of the heavy clouds.

As I finished my meal I saw those dark clouds being blown quickly out of sight, replaced first by bright white clouds, then patches of clear blue sky.

The earth is both washed and renewed. Our resources are replenished.

That is my expectation for this storm in my life. It was necessary, and beneficial, but the darkness is being quickly pushed away, leaving a clean slate and renewed strength and resources.

The Economics of Greek Food

I'm hungry. It's 3:30 pm -- more than late enough for lunch. There is food ready in the kitchen.

I'm temporarily too tired to go get it.

When I took Economics in college I learned that "Economics is the study of how people allocate scarce resources among unlimited desires."

My most scarce resource is stamina. Until I typed that sentence I thought it was energy, but stamina is more accurate. It's also sneaky. I can judge my energy level directly and allocate it accordingly. I don't know how much stamina I have until it's gone, and I'm back in my recliner, limp.

As I thought about what to fix for lunch I considered the fact that these are my last few days off a neutropenic diet. I have some corn tortillas, and wondered what I could have with them. I decided I wanted hummus. And olives. And as long as I was planning a Greek lunch, avgolemono soup. There are no greens in the apartment, or I would have added a Greek salad.

The avgolemono would have to be avgo-less: eggs are a treat food. I could thicken it with cornstarch. It cooks for a long time, so I could start it, then rest.

The hummus takes a little more work, but it can be done in stages.

I would be able to enjoy the tortillas, and the olives, and the fresh lemons that I can't have next week.

I did one thing at a time. I didn't commit to something new until the previous step was cleaned up and put away. I thawed some broth I made in December and started the rice cooking. I grated four mini carrots and added them to the soup. I washed and juiced a lemon. I mixed cornstarch in a prep bowl with some juice. I sat down to rest.

I looked at the soup; it was too thick. I used too much rice. I added water and let it cook. I got out the ingredients for the hummus. I sat down to rest.

I put the ingredients in the food processor: garbanzos, almond butter, garlic, lemon juice. No parsley in the house. I put the utensils in the dishwasher. I put the jars away.

I processed the beans. I let the processor run. And run...I like my hummus very smooth.

And all this time, when I wasn't sitting and resting, I was on my feet. I didn't walk very far, I didn't carry very much, I didn't work very hard....

I tasted the hummus. Yuck! Too much almond butter, barely any lemon. Get out another lemon. (Hmm...now I can add more lemon to the (extended) soup.) Juice the second lemon. Add to the hummus, which is now too thin.

Put the hummus in a storage container, so that none is wasted. Put the container in the refrigerator. Rinse the processor and its parts.

And collapse into the recliner. I am beyond limp. I'm beyond wet spaghetti. I feel fine. I don't hurt anywhere. I'm mentally alert.

And my legs are waving a white flag. My arms are pretty limp, too...I am just able to drape them on the laptop and type.

And I forgot to eat the olives!

Note: the lemon hummus recipe is available on the YouTube video clip at the bottom of the right-hand column.

Meals on Wheels -- Wow!

I found out Wednesday that my insurance company offers "10 frozen Meals on Wheels" after each hospitalization. I decided to try them to see whether there was any way I could work them around my allergies and other medical restrictions. They were delivered today.

"Ten frozen meals" does not do them justice. At all.

Each meal includes a frozen entree with veggies, juice, bread or roll and snack. The juice is all 100%, not corn syrup. The bread and rolls are dairy-free. There was an insert with serving suggestions and full ingredient / nutrition info. That will also help me figure out what some of the little cups are.

There were instant coffee and margarine servings, that would be appreciated by others.

Will all the meals work for me? No. The cheese omelet entree is completely off limits, and I'll have to discard the "sour cream and chive" potatoes and "loaded potato."

But most of the food will work. It's easy to prepare, easy to clean up, individual servings, varied...and FREE. It's been prepared in a commercial kitchen, and the produce is all cooked, so I can eat it when I'm on a neutropenic diet.

This is huge, just huge. Each time I stay in the hospital overnight I can request a box of ten meals. I cannot express my gratitude and relief.

Update: I ate one of the meals last night, to try them. There won't be a black market for these; I'd rank them a little below a Banquet frozen dinner. They contain all sorts of fractionated food components that I usually avoid like the plague, e.g., soy protein isolate. Many of them contain sodium caseinate, which is a dairy product, but in very small quantities.

That does not change the fact that I am grateful for them and am relieved to know they are available after future rounds of chemo. They are easy to prepare, easy to clean up, single servings and free.

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.

Hi! I'm home!

I'm home from the hospital. I have not reconnected my computer, and probably won't tonight. I did charge it before I packed it.

My cable modem, on the other hand, was never disconnected.

I can use my computer tonight as long as the charge from hospital lasts.

I'm home. The day went well. Some of my biggest concerns turned out not to be problems.

Yes, I'm tired. I'm also healthier than I've been in a long time.

I have a lot to do, in a lot of different areas, starting with getting all my new medications straight.

But I'm home, and it feels good.

Thanks!
Flo

Today's the day!

I'm being discharged from the hospital today!

I've seen my doctors, had my questions answered, cleaned up.

I've set up my next chemo session, talked about what to expect, talked about what to take.

I've talked to the discharge nurse, who will remove the outer part of the port on my chest, tell me how much insulin to take and give me prescriptions to continue at home.

After two weeks of outstanding food, breakfast was awful.

See you soon!

Starting to add to the inpatient blog... rooms

It's been a busy week for me. I'm happy with my decision to create a supplemental blog about my inpatient stay, but I've had no chance to get back and work on it.

I know that many of you have questioned the number of room changes I've experienced. Some of you have become quite indignant on my behalf. My first post will be a travelogue.