Tuesday, July 26, 2011

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.


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.


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.


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!


  1. I really enjoyed reading that. I enjoy it when ever you speak. Thanks again for believing as much as you do!

  2. I read most of what you write, provided I have the time, assuming a toddler is not climbing up my leg. :)

    I never understood why they serve such horrible (as in, unhealthy) food at hospitals either. The food at Western is TERRIBLE. Of course that's not a healing hospital, but still, why do they think that kind of food is going to help anyone??

    Anyway. I wish you much rest and comfort and healing.

  3. Aw shucks. I like being a good audience.

  4. Me too! It's good stuff... and we love your stories

  5. Thanks, y'all! And Allison, what stands out to me is that I'm not talking about anything extreme. I'm talking about things that everyone knows about and agrees with: whole grains, avoid sugary snacks, get 5-6 servings of fruits and vegetables each day. It seems like they'd at least try to make that happen.

  6. I not only made it through the whole thing I enjoyed every bit off it.I love your stories! I think more people than you realize read whole posts from you. You are a very loved man! on a side note I am horrified to hear what they feed you. I wish I could come make your meals. :)

  7. Thanks, Alaina. They did deliver what I ordered today: eggs, a banana, oatmeal, cream of wheat, and some juices. I couldn't finish the banana or the scrambled eggs because of my tongue, but that's okay.

    I think there's only about 3 more days till my body starts recreating my immune system--assuming my marrow scan tomorrow is clean.

  8. LOL! What the heck! I read the whole boring thing! Jeez Bro! I love you man!


  9. And we read the whole thing out here, too. I think that some of the peeps here in Sac are tracking you as well.

    What's up with your tongue? Dehydration and sores?

    We're praying for you, Shammah, and we love you very much.

  10. I read the whole thing. Praying for you too. Your food service as well. You are an amazing man of God, every time I read something from you- it is a blessing to know you. :)

  11. Thank you everyone! I couldn't respond yesterday. Fevers, benadryl, and all that.

    The food was all what it was supposed to be yesterday, but I didn't even look at dinner because of the fever.