18 Months Redux

Well, I went to get the results of my tests from my 18 month bone marrow biopsy, and they were what I hoped for . . .

I am in remission, with still 100% chimerism!

First I thank my God for His love and mercy, and His guidance.

Now, of course I had some worry, but given that I feel pretty good, and they hadn’t called me after a couple of days (unlike March 15, 2016) I felt like my remission was no surprise.

But, there were a few things in the report that I will need to get looked at, like dry eyes, low potassium, low vitamin D, and low thyroid. All of these except the thyroid are already being dealt with, and I’ll meet with my personal doctor soon to look at that. Honestly, I’ll deal with all this, gladly, compared to AML!

So I add a couple of pills and some eye drops, and I’m off the antiviral drugs, so it’s a wash. I’ll take it.

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18 Months and Doing Well

As it turns out, with a ReBirthday of June 28, this means my 6 month intermediate date is December 25. How neat is that?

In any case, the clinic doesn’t do bone marrow biopsies on Christmas, so I ended up going today for Number 8. This one went as well as any of the others, and I am now at home resting in the recliner with my butt against a pillow.

Next week, January 3, I have a series of follow up appointments with my PA Rashi, my primary oncologist Dr. Solomon, and the GVHD specialist. I know from experience, sadly, that if I have relapsed, I will get a call from Dr. Solomon on Friday or Saturday, so they can get me back in and get after it.

Having said that, I don’t expect anything more than continued remission, because I feel very well. Plus, I fought off a cold some time back, meaning my immune system is somewhat robust.

But, as the saying goes, I hope for the best and prepare for the worst. I’ve got a bag packed in case I get a call, so I can go any time. Of course, it’s hidden from my wife, so shhhhh.

So, next week I will give an update, and probably a year-in-review this weekend.

 

Normal?

Sorry it’s been a while since I’ve posted here. I will try to catch up in the next few weeks, but just know that – God be praised – I am 507 days out from my bone marrow transplant, and in remission!

So . . .

These past three weeks were kind’ve scary, as I suffered my first cold since my diagnosis. I had all the cold symptoms, headache, runny nose, cough. No fever, thank the Lord.

My wife was worried about pneumonia, but I knew I had been vaccinated for that, and I wasn’t worried about that. Well, not as worried as she, in any case.

Now, she wanted me to call my oncologist, but I quoted her Benjamin Franklin’s addage that one could treat a cold and get rid of it in two weeks, or it would go away in a fortnight on its own. So I got her to agree to wait and see.

And here, now, three weeks later, I am all clear.

So how did I get a cold? Ah.

Three weeks ago I flew on an airplane to a client location. In cold and flu season. Through the busiest airport in the world.

Not smart. But now I know. And I got over it.

I’m . . . almost . . . normal. And it feels great.

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!

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!