Day 99

 I’m posting today since tomorrow I’ll have my sixth bone marrow biopsy, and I can’t guarantee I’ll feel like it then . . .

I am so thankful for where God had led me. My blood numbers are all where the doctors expect, and my chimerism results look great – myeloid is 100% and lymphoid is 86%. Very little GVHD so far, likely because my donor is my baby brother. I’m weaning off the Prograf, so I know that can change, but that also means – surprise! – my hair is growing back. Apart from that, it’s mostly fatigue and queasiness, nothing I can’t handle, especially compared to full blown AML!

I’m also thankful for everyone who reads these pages, for the encouragement and strength you’ve shared, and how you’ve shown me that I’m not alone in this.

But I know it’s still one day at a time, so on we go. After the biopsy tomorrow, I’m scheduled to meet with the doctor and the team on the 19th, to assess where I am, and the next steps.

Then . . . we shall see. 

On to the biopsy tomorrow!

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Day 90 – Time Flies

Wow. It’s been 90 days now since my bone marrow transplant, and life is moving fast.

The good news is that I continue to move toward normal, if such a thing exists. All my blood test numbers continue to improve or at least stay in a decent range. 

So far I haven’t shown any major symptoms of Graft Versus Host Disease, which we call GVHD. Part of that is a credit to the close a match my donor was. Part of that is also because of the immunosuppressive drug I’ve been taking, Prograf. By, as you can imagine, Prograf has its own side effects, so I get to live with those, but believe me, they’re better than GVHD, and better than having leukemia relapse. And I still have some side effects lingering from the three rounds of chemotherapy, especially the last round I took before the transplant, because it was designed to really kick my marrow into the trash bin.

My side effects right now are:

  • The most obvious, hair loss. All of it. I mean, yes, I’m bald, but this means no eyelashes, no nose hair, no hair on my toes. All gone. This is a side effect of both the chemo and the Prograf, so I’m double sunk. More on this later.
  • A terrible sour acid taste to everything I eat. I have been able to mask it with spicy food like Mexican or Thai, or by very bland food like oatmeal. But anything with a savory flavor or a sauce of any kind ends up tasting sour and acidic. They tell me this isn’t unusual, but they can’t really tell me how long it will last – it could go away any time, or it could last a year. I have to say, this is the most annoying part of it, but one effect is that I’ve cut back eating and I’ve lost 30 pounds.
  • Swollen feet and lower legs. This started out on just one leg, my right, but now my left foot and ankle shows swelling. This happens late in the day, especially if I’ve not gotten exercise, so I try to stay active to prevent it. I can also wear compression stockings, and they really help.
  • Periodic nausea. More like queasiness, really, since I’ve never thrown up, but still annoying. Fortunately I have some good drugs I can take for it that relieve it quickly.
  • Low energy levels, meaning I get fatigued easily. This is norm, I’m told, and I’m trying hard to work by endurance back up.

    But despite all this, I’m doing well, and my outlook is great. I know I owe all this to God’s grace, and a great medical team, and to my wife and family. I also know I have a multitude of people praying for me always, and for that I am extremely grateful.

    So what about my hair? Well, here’s some more good news. Since about Day 50 they’ve been reducing my Prograf dosage, and now, in just the last week, my hair has started growing back! Granted, it’s very tiny baby hair on my head and face, but it’s there. I’ve even had to shave around my mouth. 

    Coming up is Day 100, and (oh joy) I get to have another bone marrow biopsy. Then the next week I’ve got an appointment with the whole team, and we’ll hear whether there’s any cancer left. My money is on No!

    Update on Craig Sager

    LOS ANGELES, CA - JULY 13: Honoree Craig Sager accepts the Jimmy V Award for Perserverance onstage during the 2016 ESPYS at Microsoft Theater on July 13, 2016 in Los Angeles, California. (Photo by Kevin Winter/Getty Images)
    Craig Sager (Photo by Kevin Winter/Getty Images)

    A few months back, I first heard that Craig Sager was fighting his own battle with AML, the same leukemia I have. For those who may not know, he is the colorful TNT sports announcer, who was diagnosed in 2014. Since then he’s had two bone marrow transplants, but in March he found out he had relapsed again.

    However, I read today that he is having a third BMT at the MD Anderson Cancer Center in Houston.

    I also watched a video of his acceptance of the Jimmy V award at this year’s Espys. He echos my hope, and I take a lot from his courage.

    Enjoy.

     

    Being Thankful for The Little Things

    Today I went to renew a license at the county courthouse, and it reminded me how much of life’s normal features I have come to appreciate.

    First, I parked several blocks away and walked over, both to save the parking fee, and to get some exercise. It felt good.

    Second, I was glad to have made it to the point where I can actually renew something.

    Third, I got a little chuckle when I read the part asking my hair color. I wrote “I wish.” The clerk didn’t bat an eye.

    Anxiety and Relief

    (Via Adam4d.com)

    I have wondered about Jesus’s anxiety, His agony, in the garden of Gethsemane. I have always seen it as a special case, especially since Paul later tells us to be anxious for nothing, in his letter to the Philippians (Phil 6:7). I certainly don’t blame Him.

    And now, as I’ve been fighting leukemia, I’ve confronted anxiety myself plenty of times. For the most part, prayer has given me God’s relief, though it doesn’t always come immediately. But this cartoon reminds me that I may not get the relief the world says I should expect.

    One thing I take away is that Jesus confronted his anxiety, and gave it over to God. He was then prepared to go through whatever He had to, since He knew who was in control.

    Another thing I take away is that while we say that God will handle it, and it will be okay, I have to remember that for Jesus that included His torture and crucifixion. Obviously “okay” needs to be defined on God’s terms.

    Am I ready for that?

    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!