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.

     

    Transplant Day +5

    After getting my transplant last Tuesday, things have gone pretty much by the book. All my medical test numbers have come back where expected, save one; my liver results are a little low, but that’s not unexpected after the high dose chemo last week.
    My immune system continues to crash, but again that’s the point – knock off my marrow and replace it with the donor’s. 

    So now I wait for all that to happen, and I go to the clinic every day for testing and two liters of IV fluids. 

    As I become neutropenic I expect I will end up with a fever ( which they consider anything over 100.5F) and be back in the hospital in-patient. But, like after my original chemo, I don’t think I will end up with any identifiable infection.

    To be honest, when it happened the first time and I had to be re-admitted, I felt a little guilty, like I had done something wrong. But seeing that I am now an undefended target for every other living thing on the planet, I’m not really surprised. 

    So now I wait, and do what they tell me, and trust God to lead, as He has all along.

    Transplant Minus 3 Days

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    In three days I will shift my leukemia recovery to another level, with the bone marrow transplant. So, for the past week I’ve been in another round of chemotherapy, and today that shifted from taking 88 pills every 6 hours, to IV injection. Add to that all the accompanying medicines to prevent nausea, liver damage, kidney damage, bladder damage, and the like.

    And, of course, this has been accompanied by awesome support from the team here at Northside, called BMTGA. As you can imagine, I’ve gotten to know them quite well over these last 3 months, and I can’t imagine working with a better bunch.

    So now, I just wait for the chemo to do it’s thing, and reduce my marrow to nothing, so we can add the marrow from the donor. And then, the real fun begins.

    We’re All In This Together

    Today, I’m at the clinic, basically for testing the chemotherapy they plan before my transplant. I took a big dose, then they’ve been taking blood samples every half hour. Some time between now and the 21st, the pharmacist will review the results and develop a perfect schedule for me to take my chemo.

    In between tests, I decided to get up and walk some laps, and when I came around to the area where they do all the incoming blood tests, there was a patient there who I recognized. A celebrity.

    I knew he had AML, and he’s from Atlanta, so it made sense he would come here. But it shows me that we’re all the same. We come to clinic and we get healed.

    Now, I know this person was, at one time, waiting to get into remission so he could have another transplant. You see, his leukemia relapsed. It happens a lot. And I wanted to stop and ask him how he was doing. Is he in remission? He seemed as happy as any of us here. Maybe he was.

    But, something told me to leave him to himself. I imagine I’ll read an update on him soon enough. So, on one of my laps, I nodded, and he nodded back.

    And I prayed for him, again. And we went our ways.

    Happy Independence Day

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    Since I will be just a little over a week from my bone marrow transplant come July 4, it’s very likely that I won’t get to attend the annual festivities at our friends’ home this year.

    But that doesn’t mean I can provide the barbecue again. Today I’m smoking a Boston butt, but I plan to leave it about 3 hours short of where it would be if we were planning to enjoy it today. Then, it will cool and go in the freezer, and on the 3rd, our friends can set it out to thaw, and then cook it another 3 hours, wrapped.

    Of course, I’m not letting good smoke go to waste.

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    That’s ribs and kielbasa for us, tonight.

    Also, for those so inclined, I’ll let you know I always play the Star Spangled Banner when I light my smoker or grill. Because America.

    (I’ve cut a version with 30 seconds of drum roll at the beginning, so I can light it all over and come to attention. Email me and I’ll be happy to share if anyone else is interested.)

    Thank God for the Little Things

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    Trust me, there was a time when this would be a gross thing to write about. Ask Vicki.

    Almost all my life I’ve suffered from athlete’s foot. I would treat it with sprays and creams, and they would get better. But, to be honest, as soon as they would start looking better, I’d slack off. Then in a little while, they were back to their old selves.

    But, after chemotherapy, when my immune system was in the tank, I started taking antifungal pills twice a day. And what do you know, after two months, combined with lotion every night, my feet look like normal feet.

    Now the spray is going on under my socks prophylactically. I like them like this.

    Thank God for the little things.

    Hurry Up and Wait

    My plan with this blog is two-fold: to document my battle with leukemia so far (as much for me as for you, dear Reader), and to document my ongoing treatment and recovery. Today I’ll start with the latter.

    Yesterday, I made a visit to the clinic, which is short for the Blood and Marrow Transplant Group of Georgia office, in the tower at Northside Hospital in Sandy Springs, Georgia. This is where I’ve been coming for follow up after discharge from Northside as an inpatient, on April 19.

    I was there to have a bone marrow biopsy, so we can know that my bone marrow transplant that’s planned for June 28 won’t be putting good marrow in with bad. I’m not concerned, as this was the third biopsy I’ve had since finishing chemotherapy, and the other two were negative. But that didn’t make it feel any better.

    For those who don’t know, a bone marrow biopsy involves drilling into my hip bone and sucking out marrow. And, while I get some topical anesthetic, it feels like it sounds like it feels. The only thing worse than feeling it would be to have to watch it, which is why my wife Vicki chooses not to.

    After the biopsy, my hip and backside hurt all day, but today it’s better.

    Most of my clinic visits have been after my chemotherapy treatments, so we were watching the reaction of my bone marrow. This means taking blood samples and running a CBC, or complete blood count. We’re either looking for the counts of red and white blood cells to be going down, after chemo, or coming up, as the marrow recovers.

    My marrow has pretty much recovered from the last chemo, and the biopsy results should also show that I remain in remission, or cancer free.

    So from there comes another chemotherapy treatment to knock the marrow back again, and when it’s at the bottom, we’ll do the transplant.

    So for now, I’m waiting for all that to come.

    Up next – how all this has changed my view of God.