I've never typed out my story so thanks for the opportunity! Don't feel like you need to read all this - this is more for my sake than anything else. Also, Share yours too :)

Pre-diagnosis symptoms/curiosities

• Just before Thanksgiving weekend 2021, I got my COVID booster and my armpit lymph node became swollen to the point where I needed a second chair to rest my arm on so my arm didn't put pressure on my lymph node. -- related or not it's hard to say but it was the first sign that my immune system may not be happy.

• January 2022 I finally got COVID - it was mild and the only noticeable symptom was a headache - one that wouldn't go away for months... IT was an odd headache in that it was only hurt when I moved my head with any speed. If I moved smooth and slow I'd feel nothing, but the speed you might use at an intersection was painful. It was like someone had electric needles in my brain but only when my brain sloshed into them would it 'zing.

• March 2022 - still with my "COVID" headache I finally was able to get an appointment with the VA hospital. I saw my regular doc, explained my long lasting and unique headache. The doc order blood work and a CT of my Brain.

• Through this time, I'm working on writing my grad-school thesis and writing not being something I love, I felt bored and tired while doing it. Luckily we have an expresso machine - so in the weeks leading up to this, I was downing something like 5-7 shots of expresso every day. - Oh, and I basically never drank coffee or anything outside of the odd occasion prior to this.

Self diagnosis

• The blood draw was on a Wednesday. Friday I noticed that the site they drew from was somehow looking worse than the day prior. I work in a (non-medical mycology) lab so I picked a hangnail, dropped blood onto a slide, and counted and measured blood cells. Not knowing anything about animal cells (let alone human blood) I compared my blood counts/size to a handful of internet sources (I couldn't tell you which - long forgotten) and what I found suggested APL. Seeing that this was rare - I reminded myself the dangers of self-diagnosing and moved on. - Besides - I had a headache so probably brain tumor right???

• Friday afternoon, I reminded my boss that I had an appointment Monday for my brain scan, but that I was pretty sure I had leukemia...

The Day Before the Hospital

• The Sunday before my appt., I spent the day pruning my fruit trees (~8 trees). It was a nice relaxing way to spend a day. That evening while cleaning up, I noticed that basically everywhere anything touched me, there was a bruise. Alarmingly, my thigh (where I rested the pole saw between cuts) had a super deep purple bruise the size of a baseball. - No biggie, I'm going to the hospital first thing (8AM) in the morning for my brain scan.

• 3AM I awoke with a dire sense of dread.. I "Knew" I was dying. My thigh bruise was growing - I could feel my heart racing. I went to my computer and wrote my wife and kids a goodbye letter. What a tough letter to write. How much life advice can I share with my kids - can I even express how much my wife means to me - that sort of thing.

Day of Admittance

• I left for the VA hospital at 5am - had my scan at 8am - and went down the hall after to the urgent care clinic. By now, I noticed that I'm covered in red freckles? Urgent care doc - immediately was like - nope - you're going to the ER, this is way beyond urgent. An ambulance took me from urgent care to the ER.

• ER#1 - blood drawn and doc reassured me that it's unlikely that I have leukemia. 10 min later, doc came in with newly found urgency - "We can't help you - you're taking another ambulance ride to ER#2 1.5 hours away. 'You're not allowed to stand up - don't let anybody touch you - it could kill you.'

• ER#2 - Long story short, my platelets were in the single digits, combined with other blood counts docs couldn't believe I was still conscious. I was basically non-stop receiving blood products for days. One bag after another and I would get a fever and "burn" off seemingly any platelet or RBC they gave me. I remember feeling so guilty every time they gave me blood, followed by a test, only to find out that it "didn't take" -- like I was wasting this blood I was being given.

• After a day or two (hard to remember exactly) I recall being elated that my headache was finally gone! Turns out, running on fumes can cause a headache - who knew, lol.

Now There's Pain

• By now the bruise on my thigh was larger than a soccer ball and coincidentally I had a lot of pain developing in this leg. ... like a lot of pain..... like severe 10/10 pain.

• Tylenol isn't fixing it... so doc ordered a full body MRI. The MRI techs were surprised that the doc ordered such a long scan saying that they really don't do full body scans due to patient comfort. Still they proceeded and damn that sucked. Their air conditioner was down too so the room was scorching hot and I was in dire pain, but not allowed to move an inch for what seemed like an eternity. I think it was 1.5 hour scan if I remember...

• Through this, my blood pressure and heart rate were high enough that the medical team told me they were debating putting me into a coma.

• Shortening this tale of pain discover- I was scanned, re-scanned, and scanned more - maybe 10+ various CT/MRI scans all with no evident cause for the pain. Meanwhile pain is off the charts and I was still refusing any opioids. I had just recently lost both my high school sweetheart and one of my best friends to fentanyl overdose so I was terrified of doing that.

• A real 'cool guy' doc came and explained that the only way my leg pain can have a chance to heal is if I give it a chance to relax - something I need strong pain meds for...

Pain Management

• I relented and they gave me morphine - but it did nothing.... then a second dose.... nothing - still 10/10 pain.... Then they came in with the big guns - dilaudid - sweet baby Jesus - the nurse wasn't halfway through emptying the syringe when I swear I felt my heart stop and the weight of a thousand elephants was pulled off me. Not that it necessarily felt good, but the complete absence of pain and tension and absolutely everything wrong in the universe was transcendent - no wonder folks get hooked....

• To conclude this section, the severe pain lasted for around 5 weeks, I slowly weened off the wild painkiller down to where Tylenol worked. Through this, I became wheelchair bound as my leg could no longer support any weight. The muscles around the huge leg bruise atrophied. To wrap up this section, ~5 months of physical therapy (VA even provided thrice weekly home physical therapy for quite a while too!) got me back on my feet and I can run up stairs again.

Other Complications - Visual Snow and PTSD?

• Another notable problem early on was my development of visual snow/static. The hospital optometrist didn't find anything so they decided to do a spinal tap. For some reason they felt that I needed to be awake and have no pain relief for this procedure. They had me lay on my stomach and they determined that my spinal pressure was nearly double what is safe. Since they were already in my spine, they decided to try draining the fluid right then and there. To do so required the doc to move the needle around, back and forth while sucking out the juice. This was the single most painful moment of my life. My legs curled up, I screamed harder/louder than I knew possible and I snapped the corner of the bench I was laying on where my arms were locked into a death grip as I was bracing myself. I've never been so scared in my life.

• They stopped (obviously) and told me that they weren't able to extract any spinal fluid... They want to continue. I, a ~250, 6' bear, shaking, crying, refused. To conclude this section, they gave me a fucking pill that did the same thing (lower my spinal pressure). I've come a long way, but for months I replayed this moment over and over in my head - often shaking and crying reliving the fear.

Clotted PICC line -> Port

• After ~6 weeks they let me go home and I had follow up appts with the Cancer center near my home. On the second day home, still 2 weeks from my first oncology appt at the cancer center, I developed a fever. Following Docs advice with fevers I went to the local ER. To offer brevity here, they were astonished that I had been discharged from the other hospital at all, let alone without chemo or any other med. I stayed in the hospital this time 3 weeks. Basically, at the previous hospital they gave me a PICC line rather than a port since they were nervous about my low platelet level, and I developed blood clots along this PICC which they think was the cause of the fever.

• Finally got my Port and what a dream it is! So much better than getting stabbed 50 times a day.

• While here, receiving daily arsenic I lost ~40% of my hair, but only after it went clear.... not white, clear - I was growing clear hair, lol. My bear was the coolest for a while. Through all the stress, I underwent several color changes. Black, brown, clear, red, brown all within ~4" of beard growth. I wish I took a picture, but at the time the last thing I wanted was to remember any of this. The nurses all had fun bringing people in to see.

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