Looking Back, Amazed

Jesus, Jesus, how I trust Him!
How I’ve proved Him o’er and o’er
Jesus, Jesus, precious Jesus!
Oh, for grace to trust Him more!

Now that I’m in remission, and progressing as well as anyone could imagine, I take the time each day to reach out to those who are still in treatment. There are a couple of Facebook groups in particular that I read and post to. 

One common symptom that many complain of is fear. One thing about leukemia is that it comes out of the blue, with little warning. For me, I really had no idea that’s what I had, until the doctor described it to me. So, the sudden diagnosis scares most patients, and it’s how they react to that fear that colors their treatment and recovery.

As I’ve described, my first reaction, when I got the call from my doctor that day, was to pray. I didn’t know what to say to God, so I prayed the Serenity Prayer,

God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. Not my will, but Thine, be done.

I then asked His blessing on my doctor and his staff, for His guidance, and for Him to give my family strength. Then, I asked him to cure me, if it was His will.

Then, over the course of the year, I did what I was told, and went through the treatments I’ve described in these pages.

So I share that faith with others on the Facebook groups, and elsewhere. I can only hope that it does for them what it did for me.

So now, in remission, I know I have Him to thank for my life, and my sanity.

Today, I ask Him for the wisdom to trust Him more, in all areas of my life.  I could go on about how things in my life are different now, and I probably will, but suffice it to say that none of those things could do with less of God’s help.

Thank you, God. Oh, for faith to trust You more!

The Year That Was

As the new year dawns, I wanted to share an update about my fight, and share some thoughts on the past year.

I’m at day 193, and I am feeling great. Normally they do a bone marrow biopsy on day 180 (and then on the anniversary), but for me Day 180 fell on Christmas, so I got a couple of days reprieve. Then earlier this week, we had the follow-up with the doctor and team, and here’s the news:

I’m officially cancer free! 

As if that wasn’t enough, I’m now off the Prograf, my immunosuppressive drug, so I’m now clear to go out in public, to church or the movies. Of course, I need to avoid anyone who might be sick, but that’s a no brainer.

He also took me off a bunch of other drugs, and moved me to once a month follow ups, which should help the old pocketbook. 

Now, while I’m celebrating my progress, and thanking God, I can’t help but think about other things that have shown me how blessed I truly am.

First was the death of Craig Sager. His battle with leukemia, the same AML as I have, was an inspiration to me. But his death, and that of my fellow Northside patient Tim, have made me sad, and brought home how fortunate and blessed I am.

I also participate in a couple of Facebook groups of leukemia patients and survivors, and there I find out about what I can expect moving forward, and also share about where I’ve been. On that page I’ve met some people who were diagnosed about the same time I was.

One of them is Marine Major Ian Brinkley. Like me, he didn’t ever really show symptoms of leukemia. One day after a 12 hour flight, he had a bad headache and congestion, so he went to the doctor, and from the testing, found out that he had AML. I followed his progress through the posts by his wife, and he seemed to be moving along well.

But, around early fall, she stopped posting to the group. I didn’t think much about it at the time, thinking we would hear from her soon.

But over the Christmas break I got to thinking about things, and I decided to do a Google search for Ian, and I found out, sadly, that he had succumbed to his AML at the end of October.

My sadness at finding that out was profound. Here was someone like me, whose progress paralleled mine, but who, for whatever reason, wasn’t able to survive.

Like Tim.

Like Craig.

And like hundreds of others.

So, then, why did I?

I can’t answer that, except to say, by the grace of God, and by the work of my doctor, Stephen Galya, and by the hard work of the team at Northside.

And also, taking Craig Sager as an example, does this mean I might not survive long term? I don’t know. But I do know what I’ve learned from this, and that’s if I do what they tell me, and pay attention to detail, then at least I will know if and when the cancer comes back, and we can deal with it then.

So, in the meantime, now, I thank God, and I thank my family, and I thank you all, for your support and prayers. 

And I move forward, to make this year, and every year and every day from now on, the best.

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!

Day 124 – Changes in Latitudes, Changes in Attitudes

Well, I just passed 4 months since my bone marrow transplant, and things are going well. I am officially still in remission, and I’m not showing any overt signs of GVHD. The plan now is to wean me off of Prograf over the next couple of months, so I admit we may start seeing GVHD for the first time. But we will deal with that when we see it.

But the main thing right now in my recovery has to do with changes in my emotional state. For about the last month I’ve been at the mercy of swings in my emotions. It started out as what I thought might be a slide into clinical depression, which didn’t really worry me, since I know that’s as treatable a condition as any I’ve had.

But when I talked to my PA, she told me that it wasn’t unusual for leukemia patients, especially survivors, to suffer from Post Traumatic Stress Disorder, or PTSD. For those who don’t know, PTSD is, in a sense, a reaction to things that remind patients of previous stressful times and events. It’s most prevalent among returning soldiers, but we who survive a medical disorder can also show it.

For me, it happens when I’m reminded of how blessed I am to have survived, when others haven’t, or when I’m reminded of how I felt during treatment. It also happens when I hear about how others have suffered, especially when it was something that I didn’t go through.

It also can happen when I hear about things unrelated to leukemia. One poignant example happened Friday, when the wife of an acquaintance of mine, Chris Maynard, suffered a severe, and eventually fatal, stroke. Memories flooded back, of my mother passing away when I was 15, and I slipped into a bit of a funk. Fortunately I recognized it, and I talked about with Vicki, and prayed about it.

Prayer, and sharing my feelings, have made things better. As a typical American male, I’ve not done that a lot in my life, but I’ve learned. And I know this is something I need to treat, as much as I treat other symptoms of my illness. I will be sure to share more as I go on.

In the meantime, please remember Chris, his wife Ann, and their children in your prayers. These will be tough times for them. As much as your thoughts and prayers have made the difference for me, they will for him, too.

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!

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.