Monday, December 17, 2012

Stem Cell Transplant Plus 11 Months: Things We Face

I subtitled this "Things We Face," but I can only speak for what I face, of course. Still, it is the sharing of our individual experiences that lets us know what we face.


I've had an ongoing problem with hemorrhoids since about two weeks after the transplant. Today makes 11 months exactly, so it's been 10 1/2 months. The summer was particularly bad, requiring pain pills every day. (I've gotten advice from every sort of doctor that could have an opinion on how to treat hemorrhoids, including friends who are amateur naturalists--plus one professional naturalist. I'm an expert now.) They haven't been bad except for one week the last three months, but most bowel movements are at least mildly painful. Each trip to the bathroom is like an adventure. It may go smoothly, with no problems, or the trip may result in a few minutes of treatment so I can face the rest of the day without walking funny.

Okay, I got the gross subject out of the way. I don't have any other gross subjects.

One more note, though. I can predict how much hemorrhoid treatment I'm going to need by how much lip balm I need. If my lips are so chapped that the skin is peeling off of them, then I'm going to have problems in the bathroom, too. If I'm leaving my lip balm at home because I don't have to think about my lips, I'll have a great day at the other end, too.

Dry Skin

The last month or so, I've had really dry skin. That's probably the result of winter setting in (combined with chronic GVH of the skin). Tennessee's very humid in the summer, but in winter the air is much drier. I spent a winter in Alaska when I was a much younger, much healthier man, and it was so dry there that most of us were using lotion on our whole body every day.

As a note, the colder it gets at night, the less water there will be in the air. As a result, winters are always less humid than summers.

Anyway, my skin is really dry, requiring two to three full-body applications of lotion every day. I can get away with one application per day, but when I do, even rolling over in bed is irritating and painful to my skin.

Even with multiple applications per day, I flake skin from my eyebrows, ears (my earlobes are peeling!!!), the edges of my scalp, and all over my beard, whether I shave it or grow it. When I change my clothes, the act of pulling clothes away from my waist sends a small shower of flakes down onto my pants legs.


I've managed to go through this whole entire treatment, from the very first chemo, with almost no nausea at all. That remains true. Most of my formerly leukemic friends did not fare so well. I mention this for them. I've probably thrown up 6 or 7 times in a year and a half, including a couple weeks ago when I waited too long to eat breakfast. I was really lucky on this one.

Burning Eyes

Unfortunately, this is a new one, less than a week old. It only burns when my eyes are open and exposed to light. However, the burn just gets worse and worse, no matter how much I blink. I don't know how much worse it could get because there comes a point I simply cannot keep my eyes open.

The first time it happened, I was leaving WalMart. It caught my totally by surprise. The pain increased rapidly. I backed my car out of the spot I was in so that the sun would be shining on the back of the car rather than the windshield. I then sat in the car for about 15 minutes as the tears ran down my cheeks and I sniffled and blew my nose like I was at a heart-rending movie. (I cry terribly at sweet or romantic movies. It's embarrassing.)

I went someplace dim, and the pain slowly subsided over the next four hours.

It's looking to me like daytime with the sun shining is the biggest problem. (No, I do not look directly at the sun ... ever. I only glance at sunsets because looking at a sunset means the sun is shining at my face. I only look at sunsets with sun block on, and I only look briefly at sunsets.) If it's bright out, my eyes will soon be burning.

This has only been true for five or six days, but it's happened every day except one really cloudy day. Two days ago, we left Flagstaff in terrible snow. However, by the time we got to Kingman, AZ, the sun was shining. My wife returned to driving, and I drove along with a light blanket thrown over my head, and I talked with people on my cell phone under the blanket.

I still have to email Vanderbilt about the eye thing. Due to participating in a study, I already take the medicine that treats GVH (Graft-vs-Host) of the eyes every day. I have been since the transplant. The drops REALLY help. I only found out yesterday that those drops provide almost instant, though not complete, relief.

Ingrown Toenail

The very last chemo line to grow out led to an ingrown toenail. I'm on a trip to California—well, we got here on Saturday—but I saw my family doctor before I left. He told me it's not that the toenail is ingrown. It's that the skin around it is infected, which is what is creating pressure from the nail.

Chemo lines on the big toe.
So he gave me one more antibiotic to take. It hasn't really helped, though it hasn't gotten worse. He also recommended buying shoes a half-size bigger and wide. That did help, and I like the shoes, too. If you've had an ingrown toenail, you know how painful they can be. It's ridiculous. One of the worst parts of my day is putting on my socks in the morning!

I've been prone to ingrown toenails (or infected skin around the toenail, whichever) all my life, and I've always been able to take care of them. This is the first time I've had to give in and go to a doctor. I could probably take care of this one, too, but I admit it's just too painful to go digging around in there. I've always been able to handle the pain in the past, but this is the worst ingrown toenail I've ever had. I pity anyone whose ingrown toenails are always like this.

Fatigue and Chills

I know that everyone who has had a stem cell transplant goes through this. My fatigue comes out of the blue. Imagine walking along, minding your own business, and then someone suddenly stepping out and hitting you in the face with a stick. I don't have the pain of being hit in the face with a stick, but I do get the shock feeling. I lose track of what's going on around me, my ears start ringing, and I have to get my bearings. I can get my strength back by laying down for a few minutes, but if I reach that point, I can count on a 12 to 17 hour sleep the next time I fall asleep.

Often the fatigue is combined with chills. I go looking for a blanket, and I curl up in it. Fortunately, I've lost a lot of weight, and a lot of my youthful flexibility has returned. I can curl up in a tight, warm ball like a cat. That is really helpful.

On the other hand, we were visiting people last night when I got the chills. Fortunately, they seemed easy going to me, so I took my shoes off, pulled my knees to my chest on the couch, and covered myself with my jacket, and visited with them in that position. I saw no indication in their faces that they thought I was weird at all, which was nice.


I've had short term memory problems all my life. Worse, when I was in college I had a year where I smoked marijuana every day, multiple times per day. People talk about how safe marijuana is, but I'll tell you that regular marijuana smoking is devastating to the short-term memory, and that marijuana also STRONGLY produces paranoia and apathy.

That's not a political statement. I don't care if the government legalizes marijuana. It may help balance the budget. I just want to be a voice saying it's not safe to smoke marijuana. It's STUPID!

That said, chemo has expanded the meaning of "short-term" in my life. My short-term memory isn't worse ... short-term is just a longer period. Like anything less than a year.

It's funny, but last week sometime, a young friend of mine asked me, "Did all the treatment affect your memory?"

I really wondered how she knew to ask that, and I told her yes.

An hour later, I got a text from my secretary, who only works on Monday and Wednesday. It was Monday. The text was a reminder that I had given her permission to skip Monday and work Tuesday instead. Her text was in the form of a question, however. It said, "Do you remember I won't be in today?"

I didn't remember. Not even a faint memory. I trust her completely, so I'm confident she wasn't lying to me.

A few minutes later, a thought struck me.

I sent her a text saying, "I didn't approve any vacation time over Christmas that overlaps my vacation time, did I?"

What an opportunity for a young secretary! She was very kind in sending back, "I'm planning on being here because you will be gone, although it's tempting to say you did because you don't remember."

Gut Issues

Let's add this, too. I've been taking antibiotics every day for a year and a half. That means all the good bacteria in my stomach has been long since destroyed. I take new bacteria in a pill (a pro-biotic) each day, but that's a losing battle.

I won't be gross and discuss problems that can arise when your stomach doesn't work completely right, but every one of us face this issue because we're all on daily antibiotics. Of course a lot of us would have problems anyway because of GVH. I'm not sure how the docs tell which is which.


There are times when depression hits out of the blue. It's not really a problem for me because I'm pretty well-trained—hmm, no, exceptionally well-trained—in dealing with depression, just because of my community background, the pastoral role I've played in the church the last fifteen years, and my passion for learning.

I have two powerful protections against depression. Together, so far, they've served me well.

One, I have the best support system any cancer patient could ever have. Great, supportive, and large family, both close and extended, and a tight-knit, close christian community.

Two, I am well aware that when depression hits that the depression is nothing more than chemicals and electrical signals in the brain. I do not treat depression as something to be paid attention to. Instead, I treat depression like a hallucination. There's nothing real about any of the thoughts that come with it. Yes, the feelings are real enough, but acting on those feelings would be like acting on a hallucination. Never do that.

I go rest when I'm hit by depression, and I treat it like the flu. It will go away; it's like a sickness. I call for friends; I think about my kids and my wife; and I get my thoughts back into a normal track.

I know some people need stronger treatment than that. My friends and family make it hard for depression to be strong even when there's a real chemical source for it. Some people may need medication to change the feelings.

Nonetheless, the same things is true for them. They are just hallucinating. Never act on depression; act against it like you would act against the flu. Get help.

Life Is Good

So after all the things I've written about, what's so good about life?

Philosophically, life is a gift from God. He's in control of everything. There is nothing that he can't turn around. Until then, there is little that can teach us like suffering can. People who have suffered, battled, kept their chin up, and won are some of the best and deepest people you can meet. Suffering is worth it to produce those great ones that are among us and to give us hope of being among those great ones.

I walked a mile with laughter
She chattered all the way
But nary a things learned I
For all she had to say

I walked a mile with sorrow
Never a word said she
But, oh, the things I learned from her
When sorrow walked with me

But I'm not a philosopher. I'm a pragmatist. I like practical things, and I have a GOOD life. I don't mean to boast ... I'll share everything I have ...

I have wonderful, warm, life-loving friends.

My parents live across the street, and they're wise and fun. They understand what matters in life. They are worth following.

I have six children, and they are healthy, happy, and while they've face the standard problems of life, especially when they hit those teen years, they are well-armored against stupidity. I need to write a post on stupidity some day. It has a very specific meaning to me. It means living life to obtain pleasure now while ignoring the effect on other people or on your future happiness. Thoughtless pleasure, that's the only definition of stupidity that I use. My kids are stricken with occasional bouts of stupidity, just like I am, but they understand why stupidity is to be avoided, and that living a life of purpose is of primary importance, right behind the importance of making God first in your life.

I have the greatest wife ever, and probably the only woman on earth who could have tolerated me. I'm sure there's other women who know me who would think, "Are you kidding. You're a really nice person. Why would you say no one else could have tolerated you?"

I think back to burning all the handles off our pots as we cooked over a fire, living in a tent in a closed state park next to a lake. I think about the squirrels tearing their way through the tent to eat our bread, and of driving our big van into town trying to find a job.

I think about a two-year-old with impetigo, a six-month-old sitting in a car seat, and a four-year-old toddling down near the water. I think about skipping a meal, burritos at a 7-11, because I only had enough money for the family to eat.

All 'cause "God said." And my wife didn't agree "God said." She just opted to take the risk and come along.

I have the greatest wife ever. I knew it when I met her. I told myself, "Paul, if you don't marry this lady, there will never be another one like her. Never."

Thank God that worked out.

I have a really great life. I didn't want this to be a depressing post, so I thought I'd better put it in perspective.

Oh, and we drove to California on Thursday, Friday, and Saturday, so that we could see our oldest son's girlfriend (the 4-year-old in the tent by the lake story) in a theater version of It's a Wonderful Life. Oh, my goodness! That was so delightful! It was well done, and whoever turned that movie into a musical play did an excellent, excellent job. I still get flushed with delight just thinking about it!

We got to the play early, and a homeless guy stopped me and tried to sell me a cane. He had two. I have no idea where he got them. He wanted to sell one for $2. I gave him $5, then I walked around the rest of the day on the cane as though I needed it. It took some practice to get good at using it right because I'm not having any leg pain. It was fun.

Okay, I'll quit now. Otherwise I'm going to end up telling more stories, like our trip to Annie's cafe yesterday ...

1 comment:

  1. Hey, Shammah and Hannah! Hope you are doing well in California. Thank you for the recent's good to read what you're going through. We miss you! Come home soon...