Thursday, February 28, 2013

Meeting Goals!

This blog is at least a week overdue. That's probably good. I do have a case of Facebook plague, the disease that strikes Facebook users and causes them to think that their life is far more interesting and important than it really is.

By the way, I am trying to make myself discoverer of the disease with the right to name it. I posted on Facebook so that I had a time stamp for my discovery. I'm probably not first, but I'm at least going to see if I am. If you have any suggestions for a name for that disease, which strikes bloggers like myself as well, please post it in the comments.

Okay, now for the real reason for this blog:

***I RAN A HALF MILE STRAIGHT AFTER A HALF-HOUR GAME OF SOCCER!!!***

Are there any other emphases I can add besides caps, underlines, bold, italics, and asterisks, which are just bold duplicated anyway?

I'm going to be honest with you. I was so happy I cried. I was planning on shouting in victory when I reached a half mile, but I just cried instead. I guess that half mile was a deeper goal than I realized.

Somehow, a quarter mile just doesn't seem like much distance. A half mile, even though it's not much, either, is like a real run, a real effort. My mind says I could run a quarter mile even if I was sick, but a half mile? That means I'm getting better. It means I'm improving and getting stronger.

I also got up out of my chair with one leg, the other leg stretched out in front of me. Have you ever tried that? For those of you in good shape, it's very easy. For those of us who are older or who are or used to be sick, it's not so easy. In fact, when I got out of the hospital, I couldn't get up out of a chair with two legs. I had to lean forward and let my upper body weight help raise my hips off the chair, then press on my knees with my hands to get up.

I can only do it with my left leg, which I thought was my weak leg, but I guess it's not.

Meeting Goals


I've set all sorts of goals since I left the hospital one year and five days ago. I have met, uh ... let's see ... counting ... zero of them.

All my previous goals had time frames on them. Run a 5K by July ... 2012, that is. Very funny. In July I was lucky to run without falling down on my face. I did run and fall on my face twice, in front of witnesses. I did it once trying to play a game of softball and once trying to play a game of soccer. It scared everyone because back then I weighed about 135 pounds and I was losing weight because I still couldn't eat right. (That's 6 months after transplant for those that are going through it and want to know other people's time frames.)

Somehow, back in December (2012), when I realized that I was actually going to be healthy enough to do real exercise, I set a goal in my mind to achieve a real jog. I didn't set a time frame on it, but my subconscious must have decided that a half-mile straight was a real jog. I think I documented when I ran a half of a quarter mile, about 200 yards, on this blog. That was a few weeks ago. Then I ran a quarter mile a week later. A week later I ran for 4 minutes, downhill. I don't know how far it was, but even at my slow jogging pace, that's more than a quarter mile.

Last week, I managed to run a quarter mile and a half. It was very hard. My thighs got tired, and my legs were wobbling enough that I was a little worried about stumbling and falling down. My calves hurt and were starting to go numb a little bit. I could have pressed the half mile, but I was scared of overdoing it and causing a blood clot, which is what I think happened back in October. That blood clot, which literally crippled me for six weeks, was my last major setback.

My Training Program


Some of you who have to come back from nothing may try a program prescribed by your hospital. I didn't like my hospital's program. Here's what I've been doing:

  • Walk at least a mile every day. Two is better, and that is the most I shoot for right now. Usually I pull this off about five days per week. If the young warehouse workers will let me play at work, I play soccer on a small field during lunch instead of walking. (I have one goal and a couple assists!)
  • Kick box the punching bag we have out back at the warehouse or practice kicks at home. 5 minutes if I walked or 10 minutes if I didn't. Close to every day I do this.
  • Run some during the walk. Don't overdo the running, but never do a whole walk without running some.
  • Weightlifting: Bent over rows, 3 sets; Upright rows, 2 sets; Military presses, 3 sets; twice a week
  • push-ups: Whenever I think about it, up to 2 or 3 times a day, three or four times a week, as many or almost as many as I can do.
  • Try and do one pull-up whenever I find a bar to try on. I just got to where I can move up at all.
  • Crunches and leg lifts: Whenever I think about it, one set of leg lifts till it hurts mildl, then one set of crunches until it hurts mildly.
  • Stretches: pretty comprehensive stretching after walks and whenever I'm bored. I know something about stretching and joint protection, and I am carefully keeping my joints working to the best of my ability. No more setbacks that I can prevent!

Name for Facebook Plague


I mentioned wanting a name for the disease I'm trying to be the discoverer of, in which FB users and bloggers begin to think their life is more interesting and important than it really is. A friend suggested IBS, Individuals Broadcasting Self-Obsessiveness. I didn't like that too much, but I did like the idea of having an acronym. Most psychological disorders have an acronym, like OCD.

My current best idea is FBI: Facebook Idiocentricity

Wednesday, February 6, 2013

Inner Conflicts During Remission: Depression and Fear of Relapse

A friend referenced this article and asked me, "Do you find such inner conflicts in your remission/recovery?"

The article discusses the fear of relapse among other issues, though the fear of relapse stood out to me the most.

This was my response to my friend. I share it in order to share how I dealt with depression and fear. Unfortunately, there's not much advice I have for fear. My lack of fear was just miraculous, provided by God. It happened; I didn't do anything except exercise diligent effort prior to leukemia trying to live a life of faith (and experiencing great reward for doing so).



I don't think I'm the typical cancer recovery patient. Honestly, I have a lot more faith and experience than most. I've met some incredible people who I admire, but for the most part, people do not know how to deal with depression. It comes on them and overcomes them.

I have faced depression two or three times in my recover caused by the medicine or the damage done to my body or something. The depression is real and unavoidable. It's like getting mad. It's just there. You can't control the feeling, nor can you make it go away.

That's where my similarity to others who suffer with depression ends. A friend of mine teaches pretty often that we need to know what is from us and what is not.

The couple major times that depression has come on me, for weeks in the hospital after the transplant and a week or two over the summer afterward, I did not treat it like it was me. I treated it like it was a feeling that came from chemo and damage to my brain or body from the treatment. Sometimes I "hid" from it, taking even days to just rest and do nothing, talk with people, and refuse to think the way depression wanted me to think, even if that meant just curling up, sleeping a lot, and trying not to think at all.

I treated it like a disease, and a couple times I asked for Ativan or some other mood enhancer to help me overcome it or sleep better. I did not apologize for doing no work on those days. I was very sick, with depression. Some of those days I spent the day in bed.

That worked for me. I was literally depressed and satisfied and happy all at the same time. The satisfaction and happiness was me, based on my faith in God and helped by my wonderful family, friends, and brothers and sisters in Christ. The depression was sickness, brought on by cancer treatment.

I have a grossly unfair advantage, though. No one has a support system like I do. Well, maybe some do, but no one has any better. My wife was miraculously wonderful, God gave my family great grace, and people showered me with love. I have a very large family, both biologically and spiritually. I can't say my extended family is close, but I was astonished at how they rallied to my side, at least electronically if not actually in person.

As for fear of relapse, I've been a crazy Christian for a long time. I take risks with God, and I take risks with believing.

I think God told me as soon as this wonderful adventure with leukemia began that leukemia wouldn't kill me. I've just always believed that, so I don't wonder about relapse.

I had a very rough treatment, and there were a lot of hiccups in my recovery. The treatment was a lot more likely to kill me than relapse, in my opinion.

There's some pretty strong medical evidence that I'm unlikely to relapse, too. They did a very thorough job of destroying my old blood system. One round of chemo was so intense that I can't find record that anyone has been given more than 40% of that particular chemo that I received. "High dose" cytarabine is usually given at a maximum of 3000 mg/m2 for eight doses. I got twelve doses of 6000 mg/m2.

Even my oncology nurse, who only works with leukemia patients, had never heard of such a dose. She said, "This is a big dose. Are you really getting eight of these?" When I told her I was getting twelve, she just walked out of the room, saying nothing but, "Oh."

Further, those who get a transplant from cord/placenta blood usually have a slow engraftment and a gentle new immune system. I had a rapid engraftment and I have an aggressive immune system, as though I had been transplanted from an adult. This means more side effects, but less chance of relapse.

Monday, February 4, 2013

Update

A friend from California asked me about depression and fear of relapse after transplant. I am going to copy my email to him in my next post, which I'll do immediately after this one.

This one's an update.

I went to Vanderbilt on Friday. For my fellow transplant recipients, I will give some details. 1 year and 3 weeks after transplant, my hematocrit has been stuck at 39% or 40% for about six months. For those of you who don't get given those numbers every day, I'm about 2 pints low on red blood cells compared to the average man.

My platelets got into the normal range, over 130, about the same time, and they have climbed as high as 165 or so, but now they're back at 136. They jump around in that range every visit.

My white blood cell count has been up to 12.2, which is abnormal high, but is usually near the middle of normal range. The percentage of the types of white cells--monocytes, leukocytes, neutrophils, basophils, and something else--fluctuates with no rhyme or reason. At least one or two are abnormal high or low every time.

None of this bothers my doctors or the NP. They are happy with all of that.

Exercise



I have been able to exercise almost every day for six or seven weeks. I am THRILLED. Last week I did 5 laps around our warehouse, a little over a mile, in 14:17, an improvement from 15:03 the week before. I ran one lap all the way around, so I can run a quarter-mile now. It's my legs that don't want to run more than that, not my lungs.

My fingernails and toenails have always been thin, and I tiny dagger separated from my big toe three or four days ago and dug itself into my toe near the end of the nail. I dug that out yesterday, and I am back to walking without pain. It took those three days to hurt bad enough to have to do something about it. My crumbly toenails, which are worse than they have ever been despite the fact that I take beef gelatin every day, have given me ingrown toenail trouble for three months now. I seem to finally have it under control, but I won't be able to keep it that way if my big toenail just crumbles whenever it wants.

I have a barbell in my office and a dumbbell in my bedroom. I've been using them diligently, and I am almost back to normal strength. Only took a year. I never was all that strong, anyway, so that made for a lower goal to achieve :-D.

I think I'm back to where I could beat my 14-year-old son in arm wrestling. That might last a year, as he is growing as fast as any of my children have. I am, however, hoping to stay ahead of 10-year-old Leilani for a long time. We'll see.

My wife is coming to pick me up. We dropped off a car to be repaired, then she went shopping and left me at Burger King, where I had a whopper meal with large onion rings. That will really help me lose weight per Dr. Savani's instructions, huh? At least I drank only water!

I have to wrap up and ride home with my wife, so I hope I remember to put up that email that I said I would. It's a discussion of depression and how to deal with it that worked for me.