I Have Nothing to Say

 If only the title were true.

In truth, I have too much to say, too many emotions and too much emotion, I don't possibly understand how writing them down will help. But like eating my meals these days, I'm forcing myself to just do it, because it'll keep you healthy.

Friday, 5/21, roughly 5:15 AM:

Being told and warned you need too keep yourself hydrated comes with its ups and downs. Literally. Up from the chair to bathroom and back down to the chair or bed. While I am used to 100oz a day of liquid, I'm not used to more and I was told I needed more.

5:15 AM was one of the UP moments. Had to get UP to use the restroom. I got up, and was very light headed, and ran back to bed. Take 2, same result. Take 3, I made it to the bathroom, and then the lights went out. By the time I knew it, the ambulance corp was there and away we went to the HUMC ER.

I feared the worse as I tend to do. I will end up in the ER, then ICU then there goes another week+ of my life and there goes our updated timeline because I messed it up, AGAIN.

Surprisingly, after taking vitals and a bunch of other tests, they sent me home. Mistake.

2 Hours later I was shivering on my couch at home under 2 fleece blankets with 103 fever.

Rachel took me back to that ER where they admitted me, started me on antibiotics and then for the better part ignored or neglected me. I was and am still VERY upset with the treatment received at the HUMC ER given my history, diagnosis, and discomfort I was in. 

We sat in that ER for 10+ hours being neglected before someone was able to get the charge nurse involved and from there my nurse changed to the head nurse and things got moving. By 11:30 PM, 12 hours after coming in for the SECOND time, I was making my way to my room.

On Saturday I received news I did in fact have a bacterial infection with a neutropenic fever. I was NOT, however, Septic like last time, thank God, as my vitals were holding steady.

I received the meds I was begging for and the medical attention I desperately needed hours earlier, and felt calmer knowing this.

Sunday and Monday were more of the same. whatever I needed, I got. Pain management meds, mental health meds, antibiotics, Tylenol, whatever I needed. And promptly!

By Tuesday my fever began to break. Temps in the 99s most of the time, teetering between spiking or breaking, luckily, breaking won out. 

So by Wednesday with things mostly under control now, came the "well what now" question.

Nobody on my side (family and other doctors and advisors) wanted me coming home. They ALL wanted me to stay in HUMC until transplant date which is hopefully roughly a week away. And sure enough this morning we got the confirm from ALL TEAMS in the hospital, I will be staying HERE through my transplant. Going home brings with it too many risks and we are too close.

I'm not allowed to get out of bed without assistance and I was told today to make sure I get out of bed and walk each day, as I need to be in strong condition for the transplant. This to me, in theory was embarrassing. I was at the PEAK of health. Now I'm not allowed out of bed without a nurse, I'm passing out if I stand up, and I'm being told I need to move. How disgusted am I with myself? ooooh, probably a 12 out of 10.

But on the plus side, today is the strongest I have felt in DAYS, I'm THRILLED I'm not going home (I love my family but for THEIR SAKE I need to be HERE) and I can see there is some light at the end of this shit tunnel.

So I get to sit in a chair which is better than a hospital bed any day, feel a bit more human every day and run little risk of becoming severely sick again thus delaying the timeline. It truly is a win win win.

I'm lucky to have the support team behind me, led by my awesomely amazing wife Rachel, to allow me to not think of not being home as a loss, but rather as a win. she truly has LIFE covered and I don't know how. 

And we are BOTH grateful the wider team behind us and our families, our community and friends. We need you and you are here. And it means more than I can put into words.

Let's hope the good news train continues, and we make it to AND THROUGH transplant safely.

I'll write more when I feel more up to it.

Believe it or not, even this was a chore.

This disease blows (And so did the HUMC ER that Friday).