Tuesday, October 30, 2012

My First Wheelchair

I don't think I have any pictures of me in my wheelchair. I think my wife took one or two yesterday, but I don't have one.

Don't worry. It's not as bad as it sounds.

Well, don't worry, but do pray. It worries me when I say "don't worry." So let me say, "Lord willing, there's not really any problem here."

The doctors got my blood thinned to an INRating of over 2.0, which means my blood is more than twice as thin as normal (whatever twice as thin means practically). When it was over 2.0 on Sunday morning, they released me from the hospital.

They didn't send me home with any Lovenox, thank God. I'm just on Coumadin, and that is plenty. Yesterday, on the day after I was released from the hospital, I had my INR checked at Prime Care Clinic, and it was 4.7! That is almost thin enough to be alarming. They're trying to get it between 2.0 and 3.0.

The last time I was on Coumadin, I got all the way up to 8.9, blood almost 9 times as thin as average. That did alarm the hospital (last time, Vanderbilt Medical Center was monitoring my Coumadin and INR).

From that experience, I know pretty closely the amount of Coumadin I need even without their telling me. No problem, though, I like the idea of my blood being extra thin so the clot dissolves faster.

Despite the very thin blood, the clot has not dissolved yet. When my leg is elevated, the pain is minimal. When my leg is elevated and I'm on a pain pill (oxycodon, 5 mg), there is no pain whatsoever. However, when I am standing, walking, or running (I can still walk or run with no problem) the pain builds rapidly to an unbearable level.

The best situation is if I'm on a pain pill and my calf is wrapped in an ace wrap, or if I'm wearing a diabetic pressure sock. Then, I can stand or walk around for three or four minutes. Without the ace wrap or sock, even when I'm on a pain pill, I have two minutes at most, sometimes less.

So what I've been doing, say if I need a drink, is to run to the kitchen and grab a glass. Then I run back to the couch and put my foot up. I don't have to put it up on the back of a couch. I can just put it across on the seat, and that's high enough. (I don't know why that is. It seems like it would need to be above my heart.) After a couple minutes of rest there, I run back to the kitchen, pour whatever into the glass, and walk back to the couch.

I do something similar going to the bathroom. I run to the bathroom, or walk really fast, and--male or not--I sit on the toilet no matter what I have to do there. Sitting with my foot on the floor hurts some, but nothing like standing.

Sorry if that's graphic. These are the kind of things you end up dealing with in situations like this.

So last night I borrowed a wheelchair. It was awesome!

I sit in it with my right ankle on my left knee. That elevates the knee enough that my calf doesn't hurt. Then, if I need to eat something, I wheel to the kitchen, and I can stand up quickly to get a plate or glass or food or whatever. (It doesn't help going to the bathroom much, especially because it doesn't really fit through my bedroom door.

Today I took it down to the Selmer Buzz, my business. How convenient! I could do everything for myself ... almost.

Okay, that said, I need to tell you one more thing. My wife and several other women I know complain about my independence. It takes effort for me to ask someone other than my children to go get me something out of the kitchen. My wife really doesn't like it when I go to the kitchen on my own when she's home, even when I had the wheelchair. (I left the wheelchair at the Buzz today because it's a lot more useful to me there. It only helps a little at home.)

It's been suggested that I have a stubborn independent streak. I say I just hate to bother people making them carry out little errands for me that interrupt what I'm doing. The stubborn independent streak may apply to parts of my life, but I don't think that's what's happening here.

What was kind of fun is that the wheelchair prompted an older couple--customers at the Buzz who were "led" to drive to Selmer today, something they rarely do--to pray for me right there in the Buzz. It was very cool, really, because I like them. I did have to make her stop talking at one point, though, so I could go back to talking to a young man who was applying for a job with us, then go to work on the things I had come to the Buzz to do.

The prayers didn't seem to make a difference though I completely believe in instantaneous divine healing, and I've seen a number of amazing cases of it. (See also this blog; I have a friend that has met the author of that blog and seen some of the healings he describes.) I was hopeful, but I can't say that I personally was feeling that God wanted to instantly heal me. I like to know in advance whether my prayers are going to be answered.

After they left, I checked a couple times to see if I was healed. I was hoping maybe they had such great faith that I would just be better. That meant I had to get up out of the wheelchair and stand around for a minute or two. I had both taken a pain pill, and I was wearing compression socks, so it took a bit to begin feeling pain.

No go, though.

Anyway, that's where I'm at right now. Clot hasn't healed yet. My leg doesn't hurt write now because I'm typing in bed. It sure hurts when I get down and move around, though. I sure wouldn't mind that clot clearing up!

Thanks to all of you who follow this. I hope to go to work on turning this web site into a book soon.

I did do an introduction to 1 John today. I love doing podcasts. Hopefully, I'll get to do that more. I'll let you know when I get the podcast uploaded. I think you'll find it interesting.

Wednesday, October 24, 2012

Something Changed

Well, I made it five days. I think I better not "officially" close down the blog anymore.

I'm writing this from McNairy Regional Hospital in Selmer. Apparently, the stretching that I pictured in the last post was not going to do the job. It turns out that the calf problem is a blood clot, perhaps two. I have a clot behind the knee, and then I either have another in the hamstring or the clot runs up into the hamstring as well.

Clots make medical professionals nervous. The doctor told me not to stop for lunch but to go straight to the hospital, get admitted, and get the first dose of Lovenox. Of course, that was almost two hours ago. "Hurry up and wait" applies just as much in the hospital setting as it does in the military.

So here I am praying that we won't be sent home with any Lovenox. Here in the hospital, they administer it by IV (I think). At home, it's a shot to the stomach that is occasionally terribly painful. Back in February I was getting insulin every day because I was being fed intravenously. Those shots were given to the stomach, too, but they didn't burn like the Lovenox shots. I much prefer the Coumadin pills.

Inserted note: no such luck. I got the Lovenox shot in the stomach. It didn't hurt at all when administered, but five minutes later it started burning. Fortunately, it was pretty mild and only lasted 10 or 15 minutes. I hate Lovenox shots. The IV insertion hurt a lot worse because it's a much bigger needle, but that doesn't bother me. It's those stomach shots that make me tense up and flinch.

Big Prayer Request

I was also notified by email that a lady who got a marrow transplant 4 days after me has relapsed.

I'm capable of despairing like anyone else, and her story hits really close to home. She has a leukemia they called biphenotypic, which means it's like both ALL and AML. Mine is not biphenotypic, but undifferentiated. That means, I believe, that they were able to determine that she had both lymphocytic and myeloid cells go bad. My cells went bad so early in their development that they were unable to determine whether mine were lymphoid or myeloid. However, I had symptoms of both ALL and AML, like she did.

She got a fully ablative transplant with chemo and radiation just as I did and just 4 days after.

Her picture on her blog looks familiar to me, though I know I never officially met her. Even if I had met her, she would have been bald like me.

When I got the email, I cried like she was my best friend and I was brokenhearted. That is very much not my typical reaction to bad news. (I'm much more likely to cry at good news.)

When I have unusual emotional reactions, I always look to God. Our Father will let us feel his feelings sometimes. It helps us understand him in whatever small way we can and allows us to touch the immense depths of his love.

So let me go out on a limb again and say that I think God is going to show his great power in Jennifer, and that this relapse is going to be an opportunity for him to be glorified. I have no idea how this could turn into a good thing, but I predict it will because God cares about this situation.

Friday, October 19, 2012

Wrapping Up the Story (Unless Something Changes)

This blog was created so that I could journal my experience with acute leukemia and its treatment. I haven't blogged since September 9 because I didn't have any real health news. I love blogging, I love telling stories, I love explaining the Christian Scriptures and church history, and I love writing about health and scientific issues.

This isn't really the place for any of that, however.

I don't want this to be anything except the story of my leukemia battle because I think it's a story worth telling. It's been inspirational, honest, and humorous (I've been told). More than one person has told me I could simply turn the blog into a book, which is what I've hoped for from the beginning.

Let me give credit to others who have written inspirational stories (many of whom are in my blog list). What I've gone through and written about is not unique, but hopefully my perspective has been both interesting and unique.

So here's to hoping this is my final post on this blog. I'm only coming back here if new problems arise. The slow return to health is not really an interesting story, or at least I don't know how to make it one. And I sure hope that is what is in front of me.

I've spent a lot of this day with my foot up because my calf is really painful. Day before yesterday, I did a walk/run of about two miles on Monday. My calf was just a little sore the next day. Nonetheless I did laps around the warehouse, including some sprints the length of our 30-yard makeshift soccer field.

Laying around on the couch this afternoon

The next morning was scheduled to be a family trip to Big Hill State Pond, which is supposed to have the best fall foliage in this area, and my calf was very sore. Big Hill Pond is aptly named, and the best trail there involves a couple big hills.

I had to make a decision. I knew that making the trip with my family would be a terrible idea for my leg. I couldn't miss the combination of nature and family, however, so I went. Four miles of hills were a bit more than my leg could tolerate, so I've been working on my back and taking ibuprofen the last two days.

It was worth it.

About three weeks ago a mile run/walk one day followed by soccer with my son and daughter the next day created the same effect on my calf. It was so painful that I scheduled an appointment with my primary care doctor to make sure it wasn't a blood clot. After an ultra sound, they assured me it wasn't a blood clot, and it healed up in just a week, which I was very glad for.

Hopefully this one will heal just as fast.

My last appointment with Vanderbilt was in mid-September sometime. They're very happy with how I'm doing. I'm having some GVH of the skin (rashes because my new immune system is attacking my skin), but it's mild and steroid cream is controlling it well.

The hemorrhoids have pretty much stopped over the last month, which is a life-changing improvement.

I'm still on minimal immuno-suppressives, and we won't try to wean off those until the GVH has stopped.

I feel like (and am hoping) this is the end of the story for me except a smooth transition back to full health. (I plan on walking a 5K November 3.) If you're new to this blog, you should start back at the beginning of the story when exciting things were happening. Or use my blog list to find others that are still in the midst of their battle, and please pray and hope for them.

If you want to know what's happening with me in the future, here's how:

Thanks for all your prayers and for following my journey. Please pray there's nothing more to follow!