Ignoring health issues almost cost me; my journey goes on (update)

[Millhouse]

*Updated 11-3-2022

My story on this topic begins back in late 2020 and into January of this year. I was having multiple symptoms emerge that I simply ignored, thinking they would go away. These symptons began in December and kept escalating until late January. They included fatigue, where it was hard to make it up a flight of steps without needing a rest. I noticed more and more mouth sores getting to point where I would wake up with blood on my pillow. When I went bathroom (1), it was getting a darker red color over time.

Now I should have went to the doctor right not long after all those symptoms began. But one thing that also occurred that I didnt realize was my brain was also being effected. For example I have no memories for almost 3 weeks, nothing. My rationale thought process just wasnt there at the point it needed to be, even as my vision began to deteriorate.

One day in late January I just simply hit the floor, and couldn't get back up. 911 was called for me, and next thing I (barely remember) knew I was whisked away to the nearest hospital. Then I was whisked away to another hospital here down in Cincy waking up in the ICU. My hemoglobin was at a 3 which was deathly low as 7 is considerd the bare minimum, and 13 and above for the normal healthy person. My other numbers were extremely low as well.

So when I came to, my oncologist came in and told me I have Leukemia (a blood cancer). My particular type is A.L.L. with aggressive indicators in my marrow.

I would spend the next 3 weeks in the hospital getting the full court press of treatments and infusions until I was able to leave. Then in the following months up until a couple weeks ago, I underwent chemo, multiple bone marrow biopsies, a couple of lumbar injections, another week in the hospital for treatment, and getting my blood tested about 3 times a week. I am currently in "full" remission and feeling close to good again.

However, this was just phase 1 for me. Phase 2 begins very soon as I am going to be getting a bone marrow transplant due to the agressive indicators they found, with a 6 month to a year recovery after 4-5 weeks in the hospital. This is the end game for what I have, and assuming it all goes right, I will be cured for rest of my life.

So why am I sharing this, and in quite a bit of detail? I guess it's because I was literally within a couple days to a week from, well, you know. I was lucky someone was there with me to call 911. I ignored all the warning signs and it almost cost me dearly. 

Hopefully if any of you going forward have health concerns just not right and getting worse, go see a doctor. It could be a heart, kidney, brain, lung, etc. etc. etc. problem that your body is letting you know about. Also make sure your insurance is in good order. So far I am up over 300k worth of drugs, chemo, infusions, hospitals, etc. , and what is coming can easily double that. Eight months ago however, I was feeling good and healthy.


UPDATE: It's been just over 5 months since my BMT (Bone Marrow Transplant). At the moment, everything is going good. The only big setback I had was a massive blood infection I got from my chest triple lumen line. I was in the ICU for a week, and was absolutely a horrible experience. But I got through it, and now 3 months later doctor visits are every 3-4 weeks, which is a good thing. But I still have to quarantine due to no Covid shots yet and also I have no baby vaccines as they were wiped out by radiation treatments for the BMT (6 full body radiations which were twice a day, 40 minutes each, for three days just before BMT). I only had a minor outbreak of GvHD on my hands and feet mainly, but it still lingers quietly you might say. I do have neuropathy in my feet which isn't painful but annoying (taking script for that now finally). So I'm keeping my fingers crossed, getting my strength back, and hopefully by summer I will re-enter the world once again.

UPDATE #2 (posted below as well) 11-3-2022
I wanted to give an update on how things are going on my 'journey' with the fight against the big C.

Looking back before the transplant, I was told by my transplant team that everything I had been through up until that point was regular season. The transplant and months and years after is the playoffs. Initially I shrugged it off, like "Ok, what do know?" sort of attitude. Well, they knew lol, and were 100% right. I can say since the transplant in late July 2021, it is definitely not what I expected.

Up until this July of this year, it was basically a 1 step forward, 2 steps back for that entire year. Back at Easter of this year, I was in the hospital for a week from a rare fungal pneumonia I developed from a little cough a few weeks prior. As my Doctor said, I'll always be a (bone marrow) transplant patient, meaning my immune system will always be a weak one. It took me about 3 months to recover from that, using walker at times and a cane, but a cool cane though, not an old man cane.

Nowadays I am in the longest stretch I have been in with relatively good health. I still cant get my baby shots again, at least until I have been stable for a longer period of time. The original baby vaccines got wiped out by the transplant process. I do wear a mask when Im around a lot of strangers, like in grocery stores. I do however go out to ear, but at select times when it wont be as crowded. It's just the way it is for someone that has to take penicillin twice a day for the rest of the their life.

Last but not least to make this post relevant, I am on some pretty pricey medicine. I have pills shipped to me from another city that cost about $16,000 a month. Insane. But they are to fight the GvHD going on. GvHD is Graft vs Host Disease. Basically its a dna warzone going on between my donor's cells and mine that didn't match. And if left unchecked can become fatal in one way or another. So morale of the story is, make sure your health insurance is always up to date! I'm now roughly a $2 million dollar patient since all this began.

At some point I think I may write about my journey in a more proper fashion. I am just getting back to the point where I can do it. My postings on The Board here plummeted in the last 20 months, so this is why.

So yeah, don't take anything too lightly with your health. If it's out of the ordinary and/or not going away, go see your doctor. One thing I have learned is there are almost an infinite amount of things that can go wrong with us as any given time. Take care and thanks for all the comments!


(Basic recap since diagnosis)
- 9 total weeks in hospital
- countless chemo infusions and a few blood infusions in first 5 months.
- 9 bone marrow biopsies, and a liver biopsy through the neck
- 2 lumbar injections in lower spine
- 3 months of weekly phlebotomies
- numerous CT scans
- forgot more prescriptions that I was on than I can remember
- was a type 2 diabetic for many many months due to the steroid prednisone, so insulin shots daily smh