It’s Been Too Long

Wow. I looked at the site and it’s been a year since I posted. Sorry about that.

To be honest I went there to post something other than an update, but I will hold that thought for a bit . . .

Here’s where I am . . . still in remission!

When I got the results my ninth bone marrow biopsy in June 2018, taken on my second ReBirthday, Dr. Solomon told me I was still doing great, and in remission! So I am biopsy free until June 2019. And then, if I’m cancer free then, he will turn me loose – no more visits to Northside, unless I need to.

I relayed this wonderful news to my personal physician, and he is already doing research on what we need to do. Coming up in March I will do my annual physical, and we will do a run on what they will check for the rest of my life. Neat to think about.

Of course, I cannot thank God enough for the blessing of being cancer free. He continues to bless me every day.

Thank you all for your support, too!

Advertisements

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.

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!