'cause if you lose your head and you give up, then you neither live nor win. That's just the way it is.
Sorry for the late notice, but tomorrow, Saturday September 7, 2019, I will be at the annual Blood Cancer Conference, sponsored by the Leukemia and Lymphoma Society. You can register here if you want to join me.
I will be the one in the orange Hawaiian shirt with the pattern above. You can’t miss me.
After my bone marrow biopsy two weeks ago, we finally met with the staff at Northside Hospital today, and I am happy to report, I am still in remission! In fact, the doctor has now effectively released me over to the care of my personal physician, with the understanding that I visit him at least twice a year, for a full CBC and check up.
We then went over what I can expect going forward, such as an increased chance of other cancers, thanks to the chemo. But that’s what the extra testing is for, to look for early indicators that things are amiss.
I have to admit, I am ecstatic at the news, but overwhelmed at how I should react. The past couple of years has been all about coming to terms with my illness, and with my survival. I am going to have to process this for sure.
More to come, I assure you.
I am happy to report that last Friday, June 28, was my third re-birthday – on June 28, 2016, I received my bone marrow transplant.
We “celebrated” by visiting Northside for my tenth bone marrow biopsy. As I spoke of last year, my doctor told me that if this one came back as in remission, it would be my last, and he would release me to my family doctor.
Now, my official follow up visit isn’t until next Monday, July 8, but two things give me hope. First, the blood work all looked good and in line with where I should be. Second, I figure the first thing they will do is look at my marrow samples, looking for cancer cells. Since I haven’t gotten a call, I figure that is a good thing.
Once I get my report next week, I will pass along the news here, and we will celebrate without reserve.
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!
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.
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.
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.
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!
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.
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!
Plumb Mad Dog Mean 