*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

That is some serious shit. Hang in there man.

My story is not even in the same ballpark as yours, but it is still about being stupid and ignoring symptoms.

I have an arthritic knee and a few years ago it got so bad that I could barely walk on it. I was limping around like an old man, but I was only in my mid-fifties. I figured it was too early for an artificial knee and I was not going to start taking prescription pain meds. It finally got to the point that it did not ease the pain to get off my feet and rest. It would still hurt at night when I was trying to sleep. So I went to the doctor and he just gave me a prescription for and anti-inflammatory (meloxicam). I had been eating Aleve and ibuprofin like candy and the prescription just cost me $2. So I was sure it was not going to help. But the results were amazing. I know drugs work differently on different people so it might not help everyone else as much as it did me, but my knee no longer hurts at all unless I really push it. I don't go hiking or anything like that, but I can walk normal and be on my feet for long periods without any lingering pain.

I can't believe I pout up with all that pain for so long before going to the doctor.

I was gonna come in a crack a joke but jfc maybe I’ll go get a checkup. Good luck brother. Hope everything works out.

Man, really glad that was caught when it was. Too many stories of people ignoring symptoms and finding out they're stage 4 or whatever. In your case, happy to still have you walking the planet and hope the next steps go well!!

I'd add that it's not even always symptoms, though. Getting a regular physical can sometimes catch things before there is any physically noticeable signs. And I speak that as a hypocrite who does not actually get regular annual physicals but knows people who have really avoided some messes by doing just that.

(07-12-2021, 04:47 PM)Millhouse Wrote: My story on this topic begins back in late 2020 and into January of this year. I was having multiple symptons 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 symptons 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.

MY wife went thru this very thing just 3 years ago.  they found it 1 or 2 days after we closed on our house.  
 I hope everything works out for you and you are able to find a high match donor.

Best if luck and as they say.. Be Well

(07-12-2021, 05:48 PM)fredtoast Wrote: That is some serious shit.  Hang in there man.

My story is not even in the same ballpark as yours, but it is still about being stupid and ignoring symptoms.

I have an arthritic knee and a few years ago it got so bad that I could barely walk on it.  I was limping around like an old man, but I was only in my mid-fifties.  I figured it was too early for an artificial knee and I was not going to start taking prescription pain meds.  It finally got to the point that it did not ease the pain to get off my feet and rest.  It would still hurt at night when I was trying to sleep.  So I went to the doctor and he just gave me a prescription for and anti-inflammatory (meloxicam).  I had been eating Aleve and ibuprofin like candy and the prescription just cost me $2.  So I was sure it was not going to help.  But the results were amazing.  I know drugs work differently on different people so it might not help everyone else as much as it did me, but my knee no longer hurts at all unless I really push it.  I don't go hiking or anything like that, but I can walk normal and be on my feet for long periods without any lingering pain.

I can't believe I pout up with all that pain for so long before going to the doctor.

Thank you! Yeah I should have mentioned it shouldnt be ignored because it could be something major but also for a 'minor' issue. Because whether it's a toothache or something similar to what you had, it can cause quality of life to plummet due to things like lack of sleep for example. 

(07-12-2021, 06:27 PM)NATI BENGALS Wrote: I was gonna come in a crack a joke but jfc maybe I’ll go get a checkup. Good luck brother. Hope everything works out.

Thank you! I dont mind joking about it, I do it myself. But others may not because of loved ones and I completely understand that.

(07-12-2021, 06:35 PM)MileHighGrowler Wrote: Man, really glad that was caught when it was.  Too many stories of people ignoring symptoms and finding out they're stage 4 or whatever.  In your case, happy to still have you walking the planet and hope the next steps go well!!  

I'd add that it's not even always symptoms, though.  Getting a regular physical can sometimes catch things before there is any physically noticeable signs.  And I speak that as a hypocrite who does not actually get regular annual physicals but knows people who have really avoided some messes by doing just that.

Thanks! Yup getting physicals, colonoscopies, etc. can help catch things for sure. Its not always a guarantee, but at the end of the day it's about increasing the chances of finding out if something serious can be caught early enough. In my case if I had a physical done last summer, chances are I would have passed with flying colors. But once my symptons started to appear, it probably would have been caught a bit earlier. But blood cancers are different as we dont have stages 1-4 per say like organ cancers have. I went from a few days to go to having a complete reversal of it, where as if I had a stage 4 organ cancer, chances for reversal are very very slim.

(07-13-2021, 09:02 AM)XenoMorph Wrote: MY wife went thru this very thing just 3 years ago.  they found it 1 or 2 days after we closed on our house.  
 I hope everything works out for you and you are able to find a high match donor.

Best if luck and as they say.. Be Well

Thanks! The donor has already been found, which was surprisingly quick as my transplant process began back in late March into April. We are a 10/10 match (10/10 referring to certain proteins in the DNA matching for those that dont know)((hell I still dont really know but I'll take their word for it lol)). I've already had complete heart, lung, sinus,blood testing done and passed. Also got signed off from my dentist to make sure there will be no near future infections from tooth decay etc., that sort of stuff.

Damn, that's sobering to read.

It sounds like you're through a pretty important part of it, but I'm going to wish you all of the health and luck I can anyways.

Wishing nothing but the best of luck to you Millhouse. Wise words that you wrote. I've never heard anyone say that they found something too early.

(07-13-2021, 03:04 PM)Wes Mantooth Wrote: Damn, that's sobering to read.

It sounds like you're through a pretty important part of it, but I'm going to wish you all of the health and luck I can anyways.

Thanks! One thing that has impacted me more than anything is now knowing what it takes going through all of this but with kids and younger people. At least I can comprehend and understand it as an adult along with dealing with all the side effects. But for a kids and their families having to go through something similar, my heart pours out to them. 

(07-13-2021, 04:11 PM)masonbengals fan Wrote: Wishing nothing but the best of luck to you Millhouse. Wise words that you wrote. I've never heard anyone say that they found something too early.

Thank you!

I do want to say thank you to everyone posting and may post. But that wasn't my intent in posting this. We all have troubles of all kinds, some more than others, and I don't want to come across as looking for a bunch of 'get well soons', as much as I appreciate it. Most, if not everyone, reading this at some point in your life will have a medical condition, hopefully much later on like we are supposed to (so to speak).

But I have heard so many stories these last few months from other patients and online Leukimia/cancer sites, its pretty effing nuts some of the stuff I have heard. So if this can help one person out here, whether helping them directly or someone they know & love, by not ignoring issues and not ignoring their health insurance, it's worth it then.

Thanks for posting Millhouse. Something to add, if you do go to Dr and are given the ok but know there’s something not right, keep pursuing. I have heart disease and started getting dizzy often. Told my family Dr and my Cardiologist as well. They kept telling me to let then know if it got worse or I fainted (this is after I already had syncope once). 2 months ago while carrying plants I started getting dizzy and then had a heart attack which led to a double bypass and aortic valve replacement. Thanks to the VA, this $250,000 (and counting) surgery cost me nothing. You make a very good point about not ignoring health insurance.

Major health scares tend to open the eyes of those affected. Truthfully, had I read your story 2 months ago, I probably would have opened a beer, lit a cigarette and told myself “meh, not going to happen to me” and went on business as usual. Yet, after experiencing a major health scare, I am aware of how quickly life can change in literally seconds. I now have a valve from a cow in my chest, which will need replaced in 10-15yrs. I’m 54yrs old. Recovery from open heart is not fun. However, I’m blessed to have a chance to do this again when it’s time.

Having covid changed my outlook. I'm not ready to step in a cage like I was 10 years ago, but still in very good health. I figured if I got covid it would be no big deal. No. Big deal. It kicked my butt , not hospitalized, but I did develop pneumonia. I'm STILL not 100%. So we are downsizing, I'm working a less demanding board, and I'm cautious about how I feel when exerting myself. Before I was always full steam ahead, pain don't hurt, etc etc. Now I am trying to pay attention. I'm bad to not pay attention...

I got the vaccine. Normally I would not have, believing my body should be my first line of defense. Let it fight things off. If possible. But apparently immune response is all over the map with this thing.

PS this post is NOT intended to be another covid discussion starter, but highlight my changing attitude when hit with something unexpected.

(07-15-2021, 09:33 AM)Deacon Wrote: Hang in there, man. Currently fighting the Non-Hodgkin's, myself.

If you want to shoot the shit with someone that understands how godawful chemo and radiation/proton beam can be, hit me up any time. Hope you've got a good team and feel in qualified hands. Great message, by the way.

Praying for remission for you.

Thanks and likewise as well. I begin my radiation next week, I get 6 full blasts over a span of 3 days, so two a day. This is to not only kill off any possible lingering cancer cells, but to wipe my immune system out down to nothing for the transplant to occur (along with two days of heavy chemo this weekend). From what I have researched and heard, I have a great team, and my room and unit I am on is world class level (I got admitted today for next 4-5 weeks). Heck even have my Xbox hooked up to an HDMI port for the tv embedded in the wall! ANd the food so far is actually good, which is a huge mental boost lol.

(07-15-2021, 11:23 PM)HarleyDog Wrote: Thanks for posting Millhouse. Something to add, if you do go to Dr and are given the ok but know there’s something not right, keep pursuing. I have heart disease and started getting dizzy often. Told my family Dr and my Cardiologist as well. They kept telling me to let then know if it got worse or I fainted (this is after I already had syncope once). 2 months ago while carrying plants I started getting dizzy and then had a heart attack which led to a double bypass and aortic valve replacement. Thanks to the VA, this $250,000 (and counting) surgery cost me nothing. You make a very good point about not ignoring health insurance.

Major health scares tend to open the eyes of those affected. Truthfully, had I read your story 2 months ago, I probably would have opened a beer, lit a cigarette and told myself “meh, not going to happen to me” and went on business as usual. Yet, after experiencing a major health scare, I am aware of how quickly life can change in literally seconds. I now have a valve from a cow in my chest, which will need replaced in 10-15yrs. I’m 54yrs old. Recovery from open heart is not fun. However, I’m blessed to have a chance to do this again when it’s time.

Great to hear you are ok from all of that. Yeah, I mentioned way up above getting checked out isn't always a guarantee to catch anything, but its about helping your odds. Not all Doctors are perfect or know everything so to speak either, so you are 100% right. Getting second or third or more opinions is sometimes what it takes to find the right Dr. to diagnose something correctly. 

And I want to comment on the insurance more, but I dont want it tread into a P&R discussion in here. But the reality is that crap isnt cheap in the medical world. I took an abulance ride for about 30 minutes total that I got a bill for over $5,000, which insurance would then cover. For me thats the tip of the tip of the iceberg of the massive costs I am racking up. But it is also something anyone could get a bill for someday. 

(07-16-2021, 07:37 AM)SladeX Wrote: Having covid changed my outlook. I'm not ready to step in a cage like I was 10 years ago, but still in very good health. I figured if I got covid it would be no big deal. No. Big deal. It kicked my butt , not hospitalized, but I did develop pneumonia. I'm STILL not 100%. So we are downsizing, I'm working a less demanding board, and I'm cautious about how I feel when exerting myself. Before I was always full steam ahead, pain don't hurt, etc etc. Now I am trying to pay attention. I'm bad to not pay attention...

I got the vaccine. Normally I would not have, believing my body should be my first line of defense. Let it fight things off. If possible. But apparently immune response is all over the map with this thing.

PS this post is NOT intended to be another covid discussion starter, but highlight my changing attitude when hit with something unexpected.

Hey man, I went my whole life with no need to go to the Doctor other than a rare sore throat once every few years. Then once 2020 was over, I was like 2021 will be a much better year! Hahaha nope. Eventually everyone will get hit by something unexpected. Hopefully its in the very later years of life when it's expected, but nonetheless it will happen. And even though when I should beat what I have now, I know something else will hit me at some point (hopefully that time when I am really old).

Glad you seem to have it in hand and getting it taken care of. Sounds like a close call. My own close call was with my heart. I started having chest pain under exertion, like when I was mowing uphill, or walking to the building at work too fast. I finally convinced myself that it wasn't just being out of shape, and went to my Primary Care physician, who then sent me to a Cardiologist. I got an appointment in about a week, and went in and talked to him. He scheduled me for a stress test and heart echo cardiogram, which was in about another week. Went in and did the test, and when they cranked the treadmill up I started having the sharp pains. More and more people came in the room and checked the monitors, mumbled, then the test stopped and I hopped on the table to get the echo. Back to the exam room, the Cardiologist comes in and says they don't really see anything. He said I had some PVC's (bottom of heart just a little out of rhythm, so he prescribed me some beta blockers, said that should take care of it and come back in 2 months. So, I go home and take the blockers, continue pushing through the pain while mowing, exercising etc., go back in 2 months and tell him nothing's changed. He says well it's time for a heart cath then. Scheduling that took another week. So I'm on the heart cath table, in lala land getting the cath, when doctor wakes me up and tells me I have to go to surgery immediately. I'm like, wtf, If I'm having heart surgery there are things I need to do first at the house to get ready to be down for months (My son was living with me at the time) and I needed to make a will. So, I say "Well what are my options?"  thinking I can schedule it for the next day or so. Her response... "You're only option is immediate death....you're LAD (Widowmaker) is 99.9% blocked, and we just hit the blockage with the catheter. You will not walk out of this hospital alive!"  Well, that sucked... so off to open heart surgery I went. Several days later, the surgeon came into my room and asked me if I had any questions about what he did. My wife got really pissed when I asked him if I could go to the Monday Night Football game against the Steelers in 2 weeks. He says "Really, THAT"S your question?"  But, 2 weeks later, there I was, surrounded by lifelong friends who wheeled me into the stadium in a wheelchair to watch my Bengals put a beatdown on the Steelers on Monday Night. It was SWEET, even if I couldn't get a deep enough breath to cheer.
(much to my chagrine, I later looked all that up, and if you have a heart attack due to LAD blockage, you have about 5 minutes to be on the table or you will die)

Wow man.... that's intense. Glad to hear the news that they should be able to get you right.

You give great advice. I didn't pay heed to warning signs thirteen years ago, and really cost myself. Unchecked diabetes caused my liver to start dumping everything imaginable in my blood. Wound up with two stints after a mild heart attack and this damn disease the rest of my days. I keep it in check, but at 32, had I just gone in when things started feeling off, I likely could have staved it off with simple lifestyle changes.

I'll echo your sentiment. Don't be the tough guy. Hang in there Millhouse.

I was one who didn't go to the doctor much. Typical guy avoidance, but I have always been crazy healthy, aside from migraines. I have aged and it had started to show. I have now found being reliable for your family includes keeping yourself up and healthy. Other people are counting on you. If nothing else, get all the tests done to have a baseline. See what you are normally, so changes can be found and corrected. Especially if you have health insurance you pay for at work. That's your health insurance....USE IT!!

To everyone who has posted their tale in this thread, I thank you for doing so and hope for speedy recoveries to you all.

As Millhouse said, it doesn't matter how mild the problem is, get it looked at as it could be a result of something far worse. I have a close friend who is exactly 2 years younger than I am. When I was turning 40, my better half had a surprise party for me, and he was a no-show. Being his birthday as well, she had gotten him his own cake and everything, so we were kinda ticked off he bailed. For months he had been complaining of lower back pains from time to time, thinking he had pulled something. It turns out that he didn't show as he was in the hospital undergoing a series of tests. The lower back pain was being caused by a colon cancer tumor. It took years for them to finally find a doctor who could remove it, and at one point he was even admitted to hospice care as he had given up hope. When it was removed, the surgeon stated it was similar in size to a human head. Fortunately he is alive and well, but all this was disguised as, "I think I just pulled something".

Thanks for all the responses. Been a bit busy lately and not feeling the greatest, which is why I havent responded.

I had the transplant done last Thursday, which makes today D(Day)+7. A Dr. told me this morning I am ahead the curve compared to where most patients are at this point, so that is encouraging. Main thing now is making sure I keep infections at bay and my white blood count start to rebound in the next week or two. Because as of now it is 0.0, meaning I dont have an immune system.

I'm still here in the hospital, and will be for another couple of weeks, just have to wait and see on my numbers before I can be released.

(07-29-2021, 02:34 PM)Millhouse Wrote: Thanks for all the responses. Been a bit busy lately and not feeling the greatest, which is why I havent responded.

I had the transplant done last Thursday, which makes today D(Day)+7. A Dr. told me this morning I am ahead the curve compared to where most patients are at this point, so that is encouraging. Main thing now is making sure I keep infections at bay and my white blood count start to rebound in the next week or two. Because as of now it is 0.0, meaning I dont have an immune system.

I'm still here in the hospital, and will be for another couple of weeks, just have to wait and see on my numbers before I can be released.

Glad to hear you came through it, work on getting better.

My uncle died from Leukemia a while back. He used to be a huge, tall strapping Irishman, but last time I saw him his entire body had shrunk. He used to be about 6'5", but when he died he was more like 5'5" I honestly didn't recognize him when I last saw him. Take care of yourself man..
I need to get to a doc soon myself. For the first time in my life my feet are swollen and turning blueish.. Time to get it checked out and soon..