Burn, baby, burn!
Real estate news coverage is suspended from December 21 through December 31.
Tony was fortunate to get quality time with his family while he went through his treatments. This post recounts some of those times and finishes with his new hopes for a treatment not to be. This was Tony’s final post, but not his last expression. He wrote a lengthy post for the MD Anderson Hospital to share with its patients undergoing treatment for CLL. That work will be the final post in this series on December 31.
A special note before I begin:
I want to call out a special thanks to the amazing, astounding folks of the Sunshine Committee – I got your latest care package in the mail today, and words, as always, are incapable of adequately expressing my appreciation and gratitude at your continued generosity and support. My family and I would have an INFINITELY harder time making it through this whole process without you – what you’ve done has been amazing, and you bless us every day with your thoughts, prayers, and continued generosity. My family and I thank you and send our own prayers your way!!
Welcome, long-lost readers, at last you return to me!
What? That didn’t work at all, you say? I can’t make you believe that you were long-lost readers these last few weeks, when in fact I was a long-lost writer, just by writing it? What’s the point of having your own blog if you can’t brainwash people with it, anyway. Sheesh!
Ok, move along folks, nothing to see here, just move along…
This is me not, I repeat, NOT, attempting to brainwash you into believing you have abandoned me the past few weeks, and not vice versa. I figured the “tubby” remark might distract at least a few of you…
So where HAVE I been, now that someone has had the bad taste to bring it up? I thought you’d never ask!
I have been, and shall seemingly forever remain, in Houston, of course. I did get the delight of a lifetime, however, and managed to sneak home for the first time in 4 months for a weekend. And it was truly great to just soak it all in, and return to some type of normalcy – teens fighting, litter boxes to empty, dog slobber to clean up, etc. Basically I couldn’t wait to get back to Houston…
Ha, just kidding, of course! Here’s a picture of my real house.
Home, sweet home!
Here’s what the house looked like to me while pulling up in the driveway for the first time in four months…
The Blissmore, I mean Biltmore, in North Carolina
And as I’m sure you can imagine, I wouldn’t trade the Blissmore for the Biltmore for all the tea in China. It was VERY emotional after such a long absence, and while the trip was quite tiring, I wouldn’t have missed it for anything. I got to see Adam run in a cross country meet (sport of kings, and I don’t care which kings choose to disagree with me!), and I would have gotten to see Jason play soccer, but they closed the field due to weather, so I got ripped off on that one. Still, it was a great weekend – to sleep in my own bed, to pet 6 of our 7 pets (2 dogs, 4 cats, 1 guinea pig – sorry, guinea pig, maybe next time! But probably not, because you’re a guinea pig, which is really just a fancy way of saying rat, and I don’t really ever intend to pet you), to walk around the park behind our house, to enjoy US Pizza and Whole Hog all in one weekend – basically it was magical!
Me, Adam, and Deborah at a wet and rainy cross country meet – I had such a blast watching Adam run in the rain and the mud, which was always one of my favorite race environments back when I was a real runner!
Adam’s back after his muddy race. Deborah is still smiling because she hasn’t seen all the mud she has to try and get off the back of his uniform yet…
If Jason’s game hadn’t gotten rained out, then this is what that would have looked like! This pic is from last season…
I got to hear both of my kids play their preferred instruments (Adam – guitar and mandolin, Jason – drums and piano), we got to have a real family dinner with all my local extended family in attendance, and everybody just treated me like normal, and I got to sit there and enjoy the sights and sounds of a normal weekend at my house. In short, it was truly awesome!
Adam getting ready to march for the North Little Rock High School band with his trumpet.
You’re probably wondering at this point where “burn, baby, burn,” comes in. For those readers from my generation, you must have instantly surmised that my funk was flaming out of control, and that it was so entertaining that my boogie started to explode, until somebody said burn, baby, burn, disco inferno! Or perhaps you thought the heat was on, rising to the top, and everyone was going strong, and that is when Tony’s spark got hot, and somebody said burn, baby, burn, disco inferno!
Either assumption would in most cases be both valid and natural, given my abnormally high natural funk quotient. All those who know me know how often I say things like ‘burn that mother down, yo!’ for example. And check out this picture from me at my senior prom. A picture really is worth a thousand words…
I believe in miracles, where you from, you sexy thing, you?
Of course, no one captured the disco inferno quite like the Trammps.
The Trammps. Disco Inferno was by far their biggest hit. However they did have a marginal hit entitled “Body Contact Contract,” which included lines like “I’m the party of the first part and you’re the party of the second part,” and “sign on the dotted line.” I’ve always wondered where exactly that dotted line was – I must still be too young to know, because I’ve still never figured it out…
Here’s a link to their disco classic, Disco Inferno. I find this video to be an interesting juxtaposition between amazing vocals (that dude can sing, no question about it!) and arguably the worst 70′s-era soul band choreography in history (those lead singer guys can’t dance, no question about it!). Throw in the token white keyboard player, a horn section that I’m constantly in fear is going to whack each other in the head with their instruments because they’re squeezed into such a tiny space, and you have one compelling video. You totally need to check it out!
Unfortunately, my current status has nothing to do with a scintillating disco inferno. My burn, baby, burn, refers to the radiation burn I received while undergoing 14 days of targeted radiation treatment that ended 1.5 weeks ago. They said there “might be” some discoloration or discomfort under my arm, which I took to be a typical doctoral understatement and assumed my arm would basically be falling off by the end of the treatment plan. So imagine my surprise on the 14th and final day of treatment when in fact it was almost imperceptibly “red-ish” under my arm, but nothing worse than that. I was ecstatic!
Also (and this has to be the least shocking statement I’ve ever made in any blog posting to date), I was a fool. Because of course the radiation turned out to be of a cumulative nature, like so much of my various cancer treatments. Turns out that at Day 14, the final day of treatment, the radiation was getting its John Paul Jones on and was just barely getting started.
This is what John Paul Jones would have said if he had been a 21st century linear accelerator instead of a revolutionary war hero…
So what’s happened is that in the last week or so, my armpit has kept smoldering, as it were. Smokey the Bear would NOT be a happy camper, because the radiation department did NOT put the fire out before they released me back into the wild…
I don’t want to whine, but this hurt like a mother!
The most excellent news is that the burn has reached its apex and now it’s recovering quickly. Today, in fact, is probably the last day I’ll have to put burn cream on it, it’s pretty much all pink new skin at this point. Woohoo! The other good news is that it did its job! Remember that gigantic lump of lymph from my last post?
The great lymph node of ’12!
Well, it’s totally gone now! As soon as the burn clears up, I will have a perfectly normal armpit again! So that’s good, the radiation team and Captain Linear Accelerator did a great job eradicating a very problematic lymph node. Of course, I now have an emergent node under the other armpit that’s getting pretty big, so I might have to get targeted radiation on that one at some point – only time will tell…
I can see that twice in one posting I have failed utterly to distract you from the fact that I haven’t really said anything about my actual leukemia/lymphoma status…
You are getting very sleepy, and you believe I’ve told you my status now. And give my your wallet while we’re at it…
Without further ado, here’s my status. It’s been a while since I’ve updated you, so let me catch you up with the whole roller coaster.
First, I was trying my sixth consecutive chemo. The first five didn’t work, so lets try a sixth. Hey, it COULD work! And in fact, it did partially work. For me to go to transplant, both my bone marrow and my lymph nodes had to be in medically defined remission, which basically means 5% or fewer cancerous cells. That’s a gross oversimplification, but it’s close enough to make an easy-to-understand threshold for our discussion purposes. The good news is that the bone marrow, finally, at long last, was in remission – woohoo! So, bone marrow, check.
Don’t come knockin’ if the bone marrow van is rockin’!!
The lymph nodes, however, were as bad as ever. As mentioned above, they are of equal importance to the bone marrow – if either is not in remission, then I won’t even get to attempt a transplant.
So, sixth chemo, sixth failure. I’m sensing a pattern of failure here…
I’m pretty sure the pattern on this tie would be considered ‘fashion-backward’ by most people…
I’m not sure this is a pattern for success, but I’d sure like to have been around the first time the patient tried to follow these instructions…
I’m pretty sure this person was a chemo designer before he was a dress designer, and that he knew as much about leukemia as he knows about the female anatomy. I’m assuming it’s a man, because surely a woman wouldn’t be this unfamiliar with the female form…?
So the sixth chemo failed, leading the doctor to say the words I’d been dreading for weeks – “We’re basically out of realistic chemo options, we’re going to have go a different route now.”
This was not comforting news. Chemo had always been presented as THE answer – alternatives had never been acknowledged or discussed, so this seemed like bad news. And in fact, it was. The disease was starting to progress faster, meaning we were going to have to go to more drastic measures. Due to the increased timing pressure created by the quicker progression of the disease, the leukemia team at MDA initially wanted to pursue a full-body radiation treatment. Full body! Now, ya’ll saw the burn, baby, burn segment from a couple of paragraphs ago – this would not have been a pleasant alternative. Plus, it had a very low success rate. Plus, as it turned out, when presented to the transplant team, they politely informed the leukemia team that they don’t do that treatment anymore because, and I’m quoting here, “it’s too toxic to the patient and the success rate is too low.”
I still wasn’t sure that was a good thing, because based on what I’d been told that was my last chance, and now they were taking that away from me!
However, there was another plan – the leukemia team had simply shied away from it because of their concerns about the time constraints associated with it and the speedy progression of my disease. But since the option behind Door #1, full body radiation, was not really an option, suddenly the timing on Door #2 wasn’t really a problem anymore, because there weren’t really any Doors #3 – Infinity anyway. So now we’re trying the fun behind Door #2. And what might that be?
Pick Door #2, you fools!
Door #2 is simple – get the lymph nodes under control via this special pill called a BTK inhibitor. But wait – if it’s so simple, why didn’t we just do it before?? That’s because the bone marrow wasn’t in remission until just now, so until now it hasn’t been a matter of bringing just the nodes under control, it was still a matter of trying to get everything under control. So this is a good thing, now we can target just the nodes, at least for as long as the bone marrow stays under control.
The protocol is pretty simple – I take a pill every day that does it’s thing on the lymph nodes, and as soon as the nodes are in remission, AND assuming the bone marrow is still in remission (they’re equally important, don’t forget!), then it’s boom, go to transplant!
That all sounded pretty good, to be honest! The doc sounded confident that the pill would work for me and would bring those recalcitrant nodes in line finally, and that transplant would be 30-60 days away.
I even got this new app for my iPhone so I could help the doc out during the transplant if necessary!
Then, of course:
The other shoe fell…
The doc just happened to mention at the end that I’m exactly the second person in the entire country being treated for my overachieving brand of leukemia/lymphoma with this BKT inhibitor pill. That’s right, numero dos, die zweite, the-next-one-after-the-first-one. This means two things:
- There are no meaningful statistics on success. Thus far mathematically the success rate can only be 100% or 0%, and I didn’t ask what it was “so far.” Some things you’re better off not knowing!
- Because it’s a new treatment for this particular diseases (this pill HAS been used with a decent success rate on other leukemias/lymphomas), it’s still the equivalent of a clinical trial. That means the drug company controls all the usage of it in the treatment protocol. So if they write up in their protocol that “patient must eat dog poo 3 meals a day for 1 week prior to initial administration of this pill,” and the doctor objects, then they simply won’t give the doctor the pill, and they’re entirely within their legal right to withhold it. Again, that’s a bit of an oversimplification, but it suffices to illustrate my current predicament.
If the company says no, then we don’t get the drug – that simple.
They have a couple of things in their protocol that have tripped us up a bit. First is that I can’t begin taking the pill until at least 28 days since my last chemo treatment. This initially presented a problem, and is part of the reason it was behind Door #2 on the leukemia team’s treatment options – at the time they first discussed it I was still 3 weeks away from that 28 day threshold, whereas we could have started the full body radiation essentially immediately, within the 2-4 days it would have taken to work up the details of that plan. So that was one of the primary reasons Door #1 sounded like a good plan on the surface.
So we did the math and determined that Day 28 would be October 6th, so I could start taking the BTK inhibitor July 6th. Woohoo, we’ve made it to that, so no problems, right?!?
Wrong, naturally. The OTHER protocol requirement is that my platelet count has be at least 50, AND it has to get there without any platelet transplants. In fact, you can’t start the pill within 14 days of your most recent platelet transplant. That wasn’t going to be a problem for me, because I hadn’t had a platelet transplant in 3 or 4 weeks. However, on Oct 2nd my platelets were dropping precipitously, and since the doc never mentioned the platelet requirement until Oct 3rd (yes – the third, the very next day…), I agreed to get a platelet transplant on Oct 2nd. Do not pass go, do not collect $200, do not begin BTK inhibitor pills now until at least Oct 16th, thank you very much.
The other discouraging thing is that no one can explain for sure why my platelets are dropping. They just…are. My platelets were 34 and rising on Sep 28th, so even if we had known about the platelet restriction of minimum of 50, I think we would have all thought it would get there on it’s own by Oct 6th. Alas, twas not meant to be.
So the next question is how to get my platelets to 50 WITHOUT a transplant, so that I can even start taking those dern BTK pills.
The answer is another pill, which the BTK company does NOT want me to take, but which they did not specifically forbid in their protocol. Once my doctor pointed that out to them, the reluctantly agreed to led us add that to our pre-BTK protocol. I LOVE it when my doctor is smarter than their doctor!
So that has been our current plan since last Friday, when I consumed my first platelet growth pill. The doc says it typically takes 1-2 weeks on that pill to get a typical patient’s platelets up significantly, so here’s hoping. Of course, its been most of a week, and my platelets have continued to plummet (worst count this week was 4. Yes, 4! That’s an all-time low for me, lower even than when I had the unstoppable nose and throat bleed. This is big-time low, folks, considering the low end of the normal range starts at 150), and I’ve had to have two more platelet transfusions since Oct 2nd, so no matter how effective the platelet growth pills are, the BTK pill start date is still creeping farther out every time I have a transfusion. IF I don’t require another platelet transfusion, and IF the platelet growth pills work, then the earliest I could now start the BTK inhibitor pill is Oct 25th, meaning the earliest I could POSSIBLY have the transplant is sometime between Nov 12-23, depending on the amount of lead time needed to finalize the prep for the transplant.
If I require more platelet transfusions, and/or the platelet growth pill works more slowly for me (can anyone say overachiever?!?), we could easily be looking at a December transplant. Then starts the 100 day countdown before I can come home. Either way, I’ll be in Houston many more months, which has been hard to digest, particularly this week, considering that according to the original plan I would have been coming home this week, newly transplanted, newly birth-dated, as it were, and ready to start my recovery back to my normal life…
So there you have it folks, all the news that’s fit to print! Comments are welcomed, read, and enjoyed, as always, even though I’m lousy about replying to them. I’m trying to get better, but have been spending a lot of time in the clinic lately, and also working on my final draft (finally!!) of my MDA guest post blog.
My next post will actually be another guest post from last week’s guest blogger, John Miles, in which he finally reveals the details behind the IBVG. Stay tuned, folks, it will post in the next couple of days!!