Day 150 

It’s been 150 days now since my bone marrow transplant, and in a word, I am doing well. My blood numbers continue to be in the expected range, and even my hair has started to grow back.

Having said that, some sticky points of recovery from leukemia remain. Most obvious is fatigue, although I’m finding that this can be anticipated, and I can take breaks when I’m doing work, and make it stretch out. Plus, I’m finding that being able to do physical work is so mentally rewarding that helps me push through the discomfort. I make it a point not to go too far, not push myself too much, even though I want to.

Another change is that I feel cold a lot of the time. As a result I dress for warmth, and I have to sleep under a blanket, even here in the early fall.  Now, as people who know me can attest, this is a big change. I’ve always been the guy wearing shorts late into the year, and I was always easy to sweat. But that’s changed, and I’m trying to get used to it, but it’s been tough.

I’m still dealing with the PTSD, but I find that being aware of it,  acknowledging it, and sharing with my wife and friends, help me to get through it. I can’t say it makes it better, but again I know it’s part of the recovery process. 

Now, having said all that, I am still so thankful and blessed to be here. 

Yesterday was Thanksgiving, and I took the day to give thanks to God and my family for their help and their blessings. I do that daily, but yesterday was special, especially when I think how easily I might not have gotten the chance.

So, as always, I will keep going, one day at a time. My next milestones and the 6 month waypoint – Christmas day, of all days – and another bone marrow biopsy (the 27th). But I fully expect to still be in remission. I also go fully off the Prograf on Christmas, and as a result I’ll be all on my own against GVHD. 

Thanks everyone for your prayers and support! More to come!

Carrying the Word – Part 2

reported a few days ago about a job candidate I spoke with whose wife had just had breast cancer surgery, and how I shared my story with him, as an example of how God uses us in times of trial.

Friday afternoon I got a follow-up call from him, both to check on his application status with our client company (no news yet, which isn’t surprising), and to tell me that his wife was now home from the hospital and recovering well. Then he told me he had shared with her our talk, and she was very appreciative of my prayers and support.

He then described the things he was doing, and how well the staff had prepared him for them. I repeated my support, and told him I would stay in touch.

+++++

When we stand before God and our friends, and promise to have and to hold, for better or worse, richer or poorer, in sickness and in health, there’s no way to know where that will take us. And that unknown isn’t a bad thing; I don’t know how many of us would want to go through with marriage if we knew what was ahead. 

But, for me, I’ve seen that God’s plan and His will for me were, in fact, exactly what I needed. In the years that we’ve been married, we’ve endured a lot, and while my leukemia is the worst of it, it hasn’t been the only thing. Looking back, yes, those other things pale in comparison, but I can see now how they led us here. 

Personally, I’m convinced that God sent me my wife Vicki to save my life, in a lot of ways. And there’s no way to repay that in full, so I will just keep doing as He sets before me, the rest of my life.

And now, I see that I am called to share that with others, and I’m ready for that. As Jesus lived and died for me, I’m being given a chance to share and give back. 

And I can’t wait to see where that leads.

Carrying the Word

It’s amazing how God is using me for His good. I just spoke to a candidate for a job I’m recruiting, whose wife had breast cancer surgery this morning. He was in the room with her while she was recovering.

I shared with him what God has done for me, and how I now live the Serenity Prayer. He told me about all the things he has learned and how he is prepared to help her, as her partner.

So please remember Dave and his wife in your prayers! God is working!

I’m Not the Only One

One nice thing about my recovery is that it’s now getting to the point where I can start doing some of those things I used to enjoy, before The Late Unpleasantness all began.

Last Saturday I got to go to the annual convention for an organization I’ve belonged to for a number of years. To be honest, I worried that I wouldn’t be able to attend, and miss it for the first time in four years. But, I was able to attend, and I enjoyed it immensely, as much for the joy of just getting out, as much as anything.

So in between the conference presentations, I spent the time catching up with old friends, and meeting new ones. I have to admit, I don’t think some recognized me at first, given that I have no hair, and I’ve lost more than 25 pounds. But eventually they knew who I was, and we checked in. Now, some know my story, but most didn’t, and I decided to tell them only if they asked.

But the most amazing moment came almost at the end of the night, during the awards dinner. As it turns out, a friend of mine, Jeff, who has stayed in touch since my diagnosis, was recently diagnosed with colon cancer, almost out of the blue. We shared our experiences during the day, as he prepares for surgery to remove the cancer.

Jeff does a lot for our organization, and during the awards dinner, he was given an award recognizing his work. In his acceptance speech, he mentioned his cancer and his upcoming surgery. Then, without mentioning me by name, he told of how my experience with leukemia had been an inspiration to him, and how he was able to trust God to heal him, too.

For this, I truly thank God. Looking at it, I suppose that’s why I write this blog – to help other people see that God loves us and that His strength can sustain us.

In that vein, I would ask that you, my Reader, would remember Jeff and his family in your prayers.

Transplant Day +40

It’s been 40 days since my bone marrow transplant, and I am feeling as well as can be imagined. About this only strange side effects I am showing is the same two from ten days ago, the acid taste, and the swollen right leg. I’m wearing a compression stocking most days, which helps the swelling, and I am learning which foods make the taste the worst, and avoiding them, while trying to stay with the robust, spicy foods that overpower the taste. Mexican and Thai seem to do the trick.

In addition, on Day +30, my doctors took some extra blood to run a chimerism study, basically DNA testing to see how much of my bone marrow and immune system is still mine, and how much belongs to my donor. The test is named for the Chimera, a creature in Greek mythology, made of lion and snake and goat. In any case, their tests were promising – my lymphatic, or immune system, tested 83% as my donor, while the myeloid system, or my bone marrow, is 100% that of my donor. This is exciting news, and it means my treatment is doing better than expected at this time in my treatment.

So, looking forward, I now focus on the effects of having someone else’s immune system trying to keep my healthy, and do what the doctors tell me, to avoid serious GVHD.

More to come!

Milestone Number 1 – Day +30

Today is Day +30 from my bone marrow transplant, and I feel great!

For one thing, I managed to get through the neutropenic phase – when my immune system was essentially gone – without developing any infections or fever. I stayed out of the hospital, and my doctor tell me that puts me in an elite group. He told me maybe 2 percent of his patients pull it off. Well, I’m proud to be in that group.

I’ve also managed to avoid a lot of the side effects so far. No nausea, no vomiting, no bleeding. So far the only thing I got were some mouth sores (gone now), and a skin rash on my right leg only (likely from low platelet level, and gone now).

I also have a nasty, acid taste in my mouth, which makes eating some things, pretty disgusting. And, my right leg swells up from the knee down, more in the evening.

Those last 2 make the doctors scratch their heads. They tell me they are likely to go away fairly soon, so I’m not worried.

Of course, I have yet to get into the GVHD realm, but I am confident we will deal with that when it comes. For now, I am trusting God and His wonderful blessings!

Transplant Day + 15

So it’s been 2 weeks since the transplant, and I have to admit, I am a little embarrassed by how well I am doing, kind’ve like not talking about a no-hitter. But so far I have had no severe side effects from the chemo or transplant. So I thank God for this, and I keep going.

Today, my ANC level was above 1,500, meaning that the transplanted marrow has begun engrafting. My platelet level stayed the same, too, and since platelets are forever dying and being replaced (and mine have consistently been dropping, so that I required transfusions), this means my new marrow is making platelets.

About the only bad reaction I have had so far is that all my food has a really bad, sour acid taste. This leads me not to have much of an appetite, and I pretty much eat until I’m not hungry, then stop. The good news is that my doctor thinks this should only last a couple more weeks at most.

When do to the clinic every day, I hear about other patients who are having serious side effects, and some of them lead to hospitalization. In fact my doctor told me that he was somewhat surprised that I hadn’t been hospitalized, since most of his patients do. 

Well, I guess I’m going to be That Guy. We’ll see.

Transplant Day +11

I have now reached Day 11 post transplant, and things seem to be progressing as expected. How do I know? Every day, at my clinic visit, the nurse asks me a series of questions about how I’m doing. Mouth sores? Fatigue? Skin rashes? Any nausea or vomiting? Headache? Bleeding? How’s your appetite?

And now I’m getting sores on the sides of my mouth and in the internal jaw portion, that makes it impossible to open my mouth more than a couple of inches. I also am getting a red rash on my right leg, thanks to low platelet count. Fortunately it doesn’t itch or hurt. And I also get tired a lot.

So I guess headaches and bleeding and no appetite are next. Oh, well, I can live with it, since God is making sure I live with it.

I bottomed out on all my blood numbers two days ago, and I’ve had to have blood transfusions and platelets. The good news is that they all seem to be heading back up; my ANC count (the measure of my immune system, basically) went from zero to 0.04 to 0.12. Progress.

What this means is my old marrow is dead and the new marrow is taking over. And that has its own interesting effects and side effects. I can hardly wait.

So my days are spent at the clinic getting rested and having IV fluids and drugs. I’m also on a 24 hour IV of anti GVHD drugs, and carrying that pump around took some getting used to. But I get to see my doctor each day, and we talk about what’s next. It will be this way through Day 28 so I just go every day and do what they tell me.

So where do I stand? Well, I haven’t had to be hospitalized, which is apparently rather rare, according to my doctor. Most patients either get sick from the lack of immune system, or their side effects get so bad they can’t function. One fellow patient couldn’t keep any food or medicine down, and had to be taken over yesterday. So I thank God for my great doctors and staff, and I keep doing what they tell me.

Thanks to everyone for your prayers and support!

What a Week

Well, what a week.

On Tuesday I was blessed to receive my bone marrow transplant, and so far everything has been a success. 

Physically, the transplant was, in reality for me, just a ten hour transfusion, turning this

into this 

One thing I didn’t expect, because I didn’t think about it, was that I gained about 15 pounds during the transplant, and my body became rather bloated, which is saying something. Then, since so much of it was, in fact, water, I ended up going to the bathroom about once an hour for 2 days. Yes – once an hour, all day and all night.

Since this followed a week of high dose chemo, my own bone marrow is steadily going inactive, which gives the donor marrow its opportunity to take over. Over the next few weeks we will then see signs of this happening, as my blood test numbers come back up, as usual after chemotherapy. Only this time it won’t be mine, which is good, given that my marrow has so recently shown a talent for making cancer.
Of course, success is not a given, and even if it happens, I have to live through the transition. And the biggest thing there is the logical fact that my new marrow will see this old body as foreign cells, and go to work trying to do what God made it to do. This is called graft versus host disease, or GVHD, and, as usual, my doctor and team are ahead of the game. As a result I’ve been taking drugs to prevent GVHD by IV ever since the transplant, and I will keep doing so for a long time.

Now I have to get used to going to the clinic at Northside every day, for at least the next month, so they can check my progress. I’m managing to get work done there, thanks to an understanding boss and a job that allows. 

Thank you all for your prayers and good wishes – and watch here for more.