Cute Hairdo Down the Drain

Remember that haircut I gave myself a few days ago? It was all for naught as my hair started to fall out yesterday big time. I have very thick hair, so it could take a while, but baldness here I come.

Apparently, the first round of chemo I had in May was not toxic to hair follicles, but the more recent one was. I have mixed feelings about being bald. People stare at me (not that I get out much); strangers walk up to me and tell me about how they had cancer; I am somewhat vain and prefer to have hair, even though I wear it very short.

On a bright note, Marty and I went over to a friend's house for dinner last night which was a nice treat. I even managed to stay up past my bedtime. The new anti-nausea medicine I'm taking seems to have solved my morning-sickness woes, a big plus.

Take my hair, I don't care. Just let me feel good.

Good Days Bad Days

Tuesday was a really good day. I had lots of energy and even made a list of things to do. I did things off-list as well, like give myself a haircut. Yes, I inexplicably still have hair, lots of it, and I was developing an unsightly mullet. Whack.

I managed to get through the day without taking a nap, although I paid for this later when a zombie took my place at the dinner table, and I was still bugged-eyed well past my bedtime.

Wednesday was a mixed bag. I didn't need any "products" at the clinic, but I found myself paying the piper for Tuesday's overindulgence. Boy, that 3-hour mid-day nap felt good.

What will today hold? It's starting off on the right foot in that I'm not nauseous. Also, there's a chance the sun might come out later today (we haven't seen it in 3 weeks) and I might be able to spend time in my serenity garden.

My goals for the day include keeping my temperature low, destroying evil white blood cells, and rolling all my strength and any sweetness I can muster into one ball.

Sometimes you have to think big.

Freakish Symptoms

By Sunday evening, I'd developed some nasty bruising on my body and worse, several painless "blood blisters" in my mouth. I've experienced plenty of weird symptoms due to low counts, so I was able to take these mouth issues in stride. At least they didn't hurt.

Not surprising, I needed platelets yesterday. My doctor took one look at my mouth and pronounced I had such-and-such. Sorry folks, I have so much cancer-related terminology clogging my brain, I let that one float up into the ether.

Tanked up on platelets, I returned home and promptly fell onto a deep sleep. This was no nap. Then it was bed by 9:30. Low counts equal low energy. Zzzzzzz.

18,000 Platelet Survival Guide

I spent 3 long hours at the clinic today. Since they didn't draw my blood until well after I'd seen my doctor, I didn't feel like waiting around to get my counts to see if I needed any "products."

So we came home, figuring we could always go back if we had to. This gave me the advantage of eating lunch in comfort and taking a nap. Never underestimate the power of a nap.

It seems I wasn't in critical need of platelets or red blood cells, although I will probably haul through most of the platelets I do have by Monday, when I return to the clinic. In the past, I've been down to as low as 3,000 of these blood-clotting agents without showing any symptoms, so I feel confident I'll make it. But to make sure I do, I plan to take the following precautions:

use no knives

brush teeth cautiously with special foam brushes

avoid brawls and falls

temporarily cease exercising except for walking

no yelling (I rarely do)

This should get me through the weekend expending the fewest platelets possible. I have no white cells, but there's little I can do about that except avoid people, wash hands well and stick to my low-microbe diet. No big fat strawberries for me.

Serenity Garden

That's me yesterday afternoon enjoying my serenity garden. It's a small area near our garage that had been overgrown by a tall spruce and a gangly cedar, plus a stray rhododendron and a couple of azaleas. My sons ripped all that out last summer, and then my husband and I added just a few plants in the Fall. For Mothers Day, my husband painted the adirondack chair Mark had made in wood shop four years ago. We found some old paving stones out back and made a little seating area. Then a friend brought over a few additional plants to to fill in (note: grasses), which Mark kindly planted for me.

When I came home from the hospital yesterday the first thing I did was brew a cup of tea and head out to the garden. It really was serene, a nice refuge after spending six days in the hospital assaulted by chemotherapy.

I think I will be spending some time in this garden in the days to come, watching birdlife, reading, healing and just being.

Out of Commission

I'm finishing my last day of chemo today. It hasn't been too bad. Sorry for the lack of updates--it seems my vision has been slightly affected, resulting in piles of meaningless drivel. I know my readers expect much more.

The vision problem should resolve. Actually it might be more of a transcription problem. I fail to type the correct letters--and I don't even realize it. Marty is helping me with this post to make sure you can read it.

With luck, I'll be discharged tomorrow, but there always seems to be something up a doctor's sleeve (usually a small note with the word NO written on it.) I could sink my own ship by suddenly developing an unexplained fever.

We will hope for the best.

The picture tells the story: It was sunny; it was graduation; we were happy. My oldest son, Mark, earned his high school diploma on Sunday. That's grandma next to the graduate.

We went out for dinner to celebrate, and because Marty had requested a table that didn't get much traffic (I'm still neutropenic), we were seated in a private room. The food was rich and delicious, so by the time we went home to cut into the cheesecake Mariel had baked, there were no takers. We had no choice but to have a healthy slab of it for breakfast the next morning.

All the fun and games end for now. I'm to be at the hospital in an hour for a heart scan, a test that determines if your ticker is up to additional toxic assault. I'll check into my room and the chemo will start dripping by mid-morning.

I'm trying not to be too morose. Looking at the graduation photo makes me smile. I know what I have to do.

Food for the Soul

One weekend while I was in the hospital, my husband brought me The Sunday Times. The Magazine Section had a recipe for spaghetti primavera, one of my all-time favorite dishes. Hospital gruel is the opposite of this dreamy food. I promptly tore out the page and hung it on my wall to remind me that as soon as I was able, I was going to have this dish.

There are simpler ways to make pasta primavera, but Le Cirque's version is sublime. With family coming in for my son's graduation, I thought it was the perfect time to expend the effort.

I once made this dish 20 or 25 years ago, probably with a squadron of wine-swilling guests to help with all the chopping and steaming. In my current state, especially without a glass of wine, it was considerably more difficult to pull it off. I had to do the final steps strung up to my IV pole.

It was delicious, incredibly rich and laden with all the vegetables I haven't eaten in the past month. I almost swooned.

My guests liked it, too. I made sure there was a serving left to save, and I hid it in the back of the refrigerator. A few minutes ago I had it for lunch, a soothing and tasty antidote for the hospital food I'll be picking at tomorrow.

Remission Unaccomplished

This is the nature of leukemia. It lurks and it waits and it jumps in at any sign of vulnerability. Strong chemo may only wipe out half the clones, and you might need to throw more toxins at it. My bone marrow biopsy shows I still have a little leukemia lurking, but it must all be destroyed. To that end I re-enter the hospital on Tuesday June 9 where I will try a new cocktail. The good news is, I have three days to party!

The fungal infection in my lungs is responding to the drugs, so that's good. This is difficult to treat, so at least we're making progress on that front.

We had a family dinner last night--just pizza, just perfect. We have lots to celebrate this weekend. Then it's back in the slammer.

Visitors welcome.

Day of Reckoning

I thought I'd spend these few moments ruminating about the day ahead. I feel strangely calm and know that whatever path I take today, I won't walk alone.

After a pre-transplant dental evaluation, I have an appointment with my oncologist to find out the results of the bone marrow biopsy he did on Monday. I'll have lab work done to see where my counts are, and also a repeat CAT scan to check the fungus in my lungs. If I'm on the right medication, and they've identified the fungus correctly, there should be some improvement.

If the biopsy shows I'm in remission, I have a date at Dana Farber for transplant #2 on June 12. That's when the pre-conditioning would start, with transplant about a week later. If the leukemia is still kicking around, I may need another course of chemo--difficult to fathom thinking back on the past 5 weeks. Transplant could be delayed, although if the leukemia isn't out of control, they might still recommend I go straight to transplant.

In the meantime, I have a lot going on this weekend--all good things, the things that make me stay in this fight. Mark is running in 3 events at the RI State Track Meet on Saturday. On Sunday, he graduates from high school. I will have to wear a mask to graduation, but that's a small price to pay to be able to attend. I'm sure people will steer clear of me, thinking I'm the infected one.

Morning on Moosehorn Road

I walked out of the hospital yesterday at 10:30 in the morning, and spent much of the afternoon lazing about with Mariel watching food shows. I also organized the many piles of papers rising from various surfaces around the house, which brought me joy entirely out of proportion to what I actually accomplished.

We walked the dogs to the corner and back. Marty made a delicious dinner. I passed out around 9:30 pm, in my own bed.

Right now I'm sitting at my kitchen table drinking coffee, peace rising from the cup.

This is living.

Blue Jeans

It's 10:00 am and I'm sitting here in my street clothes (including real shoes) waiting to be released. Not that release is necessarily imminent (no doctors have signed off on this), but I'm determined to walk out of here today, sooner rather than later. I will not spend another night in this hospital.

My daughter is flying in today, and she has offered to come here and cry on my behalf. I don't think this will be necessary. My blood counts are still in the doldrums, and I have no idea if I've achieved remission or not, but I'm otherwise okay. My only complaints are all directly related to my incarceration: lack of sleep; poor diet; lack of exercise; mental stress.

"Scuse me while I kiss the sky."