July 28: The Big Day

Yesterday I was mostly in the haze of a neutropenic fever and sleepiness from the Benadryl that they give me when they give me blood. You can get an update on yesterday from my wife's blog.

A few days ago Dr. Strickland said, "Just four or five days now!"

My parents visiting

I said, "Uh ... till what?"

He looked at me like he was surprised I didn't know, and then I realized. "Until the biopsy?"

"Yes," he said, but I was worried I'd ruined what was supposed to be a hopeful moment. I found him in the hall a little later, and I said, "You know, it's very encouraging when your doctor is looking forward to the biopsy."

Until that conversation, it hadn't really dawned on me that the biopsy is the test of whether the chemo worked. It's a big day!

So today's that big day. At 1 pm, Dr. Lammers will come in and cut a small core out of my hip bone and draw some liquid marrow. (I had thought I wouldn't have any liquid marrow, but apparently I might.)

Jerry and Prayer

Jerry's biopsy did not come back clean, and now they've started on a new regimen today. He's got an abscessed tooth that they're treating with antibiotics and pain medication, so he needs to complete his chemo so they can work on that tooth (and several others). It's impossible to do even dental surgery on a patient with no immune system.

His son Jeremy was there this morning. Jeremy's very polite, probably in his 20's, and he's got an intelligent, together look about him. You could see the pained look on his face.

My dad reads to my daughter the same way I do

Jerry's a real talker--his son nods and adds information as needed--and he started with incredible disappointment (boy, can I relate!), but as he talked he seemed less and less bothered, until at the end he even seemed pretty hopeful. Dr. Strickland had told him, "That's why you're here. We specialize in the second round."

Apparently, about 50% of the biopsies are clean after the first round. Someone told Jerry that the 2nd biopsy is clean about 40% of the time.

I said, "What do they do if the second one is dirty, too?"

"They wouldn't tell me," Jerry replied.

Hmm.

Please pray for Jerry that this second round will work for him. When you have to continue the chemo, it means that for another 7-10 days--or perhaps more--no damage to your body will heal. Every small malady is cumulative. No surgery is possible for any problem. It's really rough.

Really, please pray for him. There are a lot of you praying for me. I'm assuming that by now, my biopsy is a foregone conclusion, clean or dirty. Because so much prayer's been offered on my behalf, God's already mapped a path for me.

Jerry doesn't have the same support.

Hair and Biopsies

Jerry told me that one of the nurses who'd been here since '94 told him that she was hoping the best, but that she knew before he went for his biopsy that it wouldn't be clear. She said it was because all his hair hadn't fallen out.

He has a standard male balding pattern, starting from the back of his head, which is obviously new because the skin's so white compared to the rest of his body. The hair on top is very, very thin. I, on the other hand, have lost no hair at all.

Jerry claims the nurses agree that you can tell how the chemo's working by how much hair you lose.

That doesn't make much sense to me, but since I haven't lost a single strand, I'd better hope that doesn't matter. It seems a better indication of effectiveness that the chemotherapy shrank to nothing the two larger tumors on my back, the incipient one on my right clavicle, and the one growing in my upper lip.

Large family means lots of visitors!

It's actually odd that I haven't lost any hair, though. One of my chemotherapies has hair loss as its most common side effect: "Hair loss (in 20%-70% of patients) may be partial or complete hair loss."

Doesn't 20% to 70% seem like an awful wide gap? They couldn't narrow it down better than that?

But I have another one that his this listed as a side effect: "Hair loss on the scalp or elsewhere on the body (called alopecia). Most patients do lose some or all of their hair during their treatment. But your hair will grow back after treatment is completed."

So let's hope the tie between hair loss and a clean biopsy is nonsense.

Hanging out in the family room back when I felt great every day

Actually, none of this really applies to me, anyway. This is a path God's got me walking. I'd hate to be counting on odds and hoping for the best. I would worry myself literally half to death.

Please pray for Jerry. He has a brother with a 6/6 match for a bone marrow transplant, which is the best situation you can hope for. It would be awful if he didn't make it to the transplant!

Food, Fevers, and Weight Loss

Note on the food I mentioned day before yesterday. Yesterday the meals came exactly as ordered. But I didn't even look at the dinner tray. I just asked my wife to grab any juice on it and send it away. I guess they agree with "starve a fever, feed a cold" here because no one tried to force me to eat, which was wonderful.

When I walked this morning, my pants were falling down. I told one of the nurses, "Neutropenic fevers make for a great diet plan." She said, "Oh, yeah. Chemo is great for the figure."

Please pray for Jerry!

July 26 Update

Don't count on anything from me the next couple days.

The idea behind my particular chemo, and the very similar Acute Myeloid Leukemia chemotherapy, is that they dump chemicals into my bloodstream for 8 days. It goes through a "PICC line" which runs some 44 inches into a large vein in my upper arm and ends in the vena cava, the largest vein in the body, which sends blood to the lungs for oxygen.

The "medicines," which are really carefully targeted poisons, then sit in my body, continuing to work for 4 to 10 days. I hit the peak of blood system destruction at day 14.

I'm on day 12. My "hematocrit" is at 26%. Here in Hematology they give blood when it hits 25%. Yours is probably 45%. My white blood cell count is 0.3, while normal is somewhere around 10 to 14.

Anyway, I'm tired from lack of blood--and from the intense pain I had for a couple days--and I have hemorrhoids and mouth sores that can't heal because I have no immune system. Fortunately, we've found a regular treatment for the hemorrhoids that make them bearable, but still, there's very little time during the day that I want to sit up, or even really stand.

I hear at day 16, I may start bouncing back a bit. Until then, though the exhaustion and 'rhoids make it difficult to sit and blog.

I'm not complaining. I am making valid excuses. If you don't hear from me, it's not because I've died or am bad off. I may just be resting and comfortable.

In two days, they do my bone marrow biopsy, and they'll see if it's "clean"--no leukemia cells.

"Clean" means there's no more chemotherapy for now, just waiting around for my bone marrow and blood to rebuild itself.

I did get up and visit Jerry today. He got his biopsy at 2 pm this afternoon. We won't know how that goes until tomorrow afternoon. I try to visit him every day because he's not allowed in the hallway without an escort. Apparently, on his day 12 he passed out while walking and vomited all over the floor. That was not what the doctors were hoping for, so now he needs an escort to walk.

My Nutrition Story

Okay, I'm going to tell this story. Unfortunately, the doctors or nurses may read this, too, and tell me I should have complained already. It hasn't been a big deal because I have plenty of my own food, and with the tongue sores I have to eat REALLY slow, anyway, which reduces the amount I can eat.

They're always sending people in to ask about the various services here, including the nurses and the cleaning guy. Of course, I give all rave reviews because I've never been treated so well in my life.

When the nutrition people asked, though, I had to tell them, "I'm not from the South. There's almost nothing on your menu I'm willing to eat."

So about 3 days ago, they said, "Just write in whatever you want. If it's something they make, they'll send it to you at any meal."

That was awesome, so I wrote in several things that I made sure could be obtained.

At breakfast the omelette came. I thought, small as that omelette is, this is nice. On the other hand, the cream of wheat I'd ordered didn't come. No problem, oversight.

At lunch, they replaced the rice they'd promised me with mashed potatoes. I don't know how many orders of mashed potatoes they've sent to me. Same with dinner.

Ok, that wasn't too bad.

The next day the omelette didn't come, either. Neither did anything else I'd special ordered, not even the chicken noodle soup that had come the day before.

So I tried again when I turned in a menu yesterday.

For this morning I got a waffle and syrup, bacon, and some sugary stuff I wouldn't dare eat.

Then a nutrition person came by and talked to me again. She tried to talk me into canned peaches, ice cream, and a peanut butter and jelly sandwich ... on white bread. I told her I didn't eat white bread, I don't want sugar, and I don't eat potatoes, is there any way they could send rice and chicken soup. Then I told her I would eat a peanut butter and jelly sandwich if they sent it on wheat bread.

For lunch, I got a peanut butter and jelly sandwich on wheat bread, chicken soup, and mashed potatoes. That's pretty much what I was promised; still no rice, though.

At dinner, I got turkey and gravy, spiced peas--even though my menu is marked for a bland diet--strawberry shortcake, and jello.

Oops.

I ate about half of the turkey and gravy. I don't think I'm in danger of getting too much fat the way I'm eating right now.

It's not really a problem for me. I had yogurt (pasteurized, which is required), cooked packaged ham, and packaged (pasteurized?) cheese. It took me about 15 to 20 minutes to work my way through the ham and cheese even without any bread.

You should give thanks every day for saliva. I replace mine with water. I also have to swish food from between my left cheek and teeth because my tongue can't go there. Makes me marvel at the human body. There are so many processes going on that we don't think about, sometimes even right under our nose. (Ok, that sad pun was intended.)

Patrick Beard

I got interrupted as I was typing the above story by a visit Patrick and Lana Beard and their daughter Lauren. Patrick is among the men I respect most in the world. He is such a delight, and his spirituality is the real, practically-bringing-heaven-on-earth kind.

I've met a couple other people from the church there in Jackson, which I think is called Christ Community Church. I never dreamed the first time I visited that they would be doing a liturgy.

Are liturgies good?

Are shovels good? Depends on what they're being used for.

I don't know anyone else there the way that I know Patrick, though I've heard similarly good things about a couple others. What I know is that I watched the interaction between him and a brother from CCC while they were in Ethiopia together (and me with them for one week), and there was something unique and special about that fellowship. I will never forget that week, which accounts for a lot of the praise I have for Patrick.

They brought their daughter Lauren who was getting an MRI earlier in the day here at Vanderbilt. She's a handicapped child that the Beards have given thanks for and who has been a blessing to everyone around her.

People commend me for how I'm handling this leukemia and chemotherapy, but every day I meet people who are doing far more. I'm just following in their footsteps, backed up by a massive amount of prayer.

Their ministry in Ethiopia is called Indigenous Outreach International. You will never regret giving to it, but I'll let their site tell you about the things they're doing over there. He got me caught up, which as usual was a great story. He has a book called Slowly by Slowly which you can get at that site, too. Patrick is a great story teller, and reading that book will give you an idea that Lana, whom I don't know very well, is as tough as Patrick.

Fever

The doctors told me that they want to keep their eyes out for fever and catch it as soon as it starts. So from yesterday to today, when my temperature climbed 0.2 degrees each time they checked it, from 97.8, where it's usually been, to 98.8, I started to worry. I called in the nurse and asked about it.

Basically she calmed me down and told me pretty much everyone runs a low-grade fever during chemo. They just want to catch it early, and 100.4 is the trigger temp.

That settled me, and the next temperature reading, earlier today, was 99.7.

Oops.

I told God, "God, I don't know what to do. I could text the prayer warriors at RCV, and they get results. But should I? Am I supposed to go through a fever? Maybe there's no need to pray. I'm confused."

I think I was on a pain pill, which contributed to the confusion.

Then I checked my temperature myself. It was 99.3. I laid down for a while, having pain pill dreams, which are half-asleep dreams, not deep-sleep dreams.

Around dinner time, they checked again: 99.1.

They just checked after the Beards left: 98.6.

Whoo, whoo.

Of course, the care partner told me, "You're shivering, so you'll probably get a fever tonight." I told her, "I shivered more yesterday, and I didn't get a fever." The RN shrugged, as if to say, "It's hard to predict anything," which is probably the most accurate thing you can say in the chemo ward. Fighting a chemotherapy cancer battle involves staying on your toes, reacting quickly, sometimes guessing, and it's good to have a great doctor like the ones I have. You can pray for Dr. Strickland, Dr. Greer, and Dr. Halliday; they're the "on your toes on the front line" team. Very good at what they do.

Well, I'm pretty sure my sister, my brother Dave, my Aunt Flo, and my sister-in-law Carrie will read this whole thing, as will my parents, but probably not my children. If you're not one of those, and you read the whole thing, then, wow, you're really patient. Remind me to tell you stories sometime; you're a great audience!