A Tentative Schedule?!

I received a tentative, but more likely confirmed schedule from the Hospital.

By all accounts, this is the fastest moving transplant regiment that they have seen and cannot believe there is a schedule already for this.

I have some more testing tomorrow, Tuesday, Thursday and Friday.

In essence they have squeezed weeks if not months of testing into a matter of days and while miraculous, it's draining and nerve wracking.

But if all goes well with the remaining "formality" type testing, I am back in the hospital on Saturday 5/8 to begin prep and transplant set for 5/13. After that they monitor for at least 2 more weeks before a discussion of discharge even begins.

Great news, right? I'm not so sure. 

"But you're going in to get better!" 

Well, I equate it to looking forward to an event taking place a few weeks from now, but knowing that a dreaded event comes in between. So while I know this is the beginning of the end, I know I still have to climb that hurdle to see the light. And I have no idea how my body will react, or what this recovery looks like or how it's going to make me feel. And nobody can tell me that. All they can say is "you're going to do great". I don't know what that even means anymore because right now, I'm in a pretty rotten place.

Over the past 2 weeks, I've had endless dr appointments, over 40 vials of blood drawn (remember, I pass out from blood work? While I haven't yet, I do need to be lying down and it's still something I don't look forward to), 3 IVs, something like 7 bags of platelet transfusions, a blood transfusion that resulted in a rash that wont quit.

And that's just the physical toll.

Mentally? you REALLY want to know where I'm at?

Honestly, so would I.

Over the past week, I've spoken with lawyers regarding short term disability in NJ and the rules, fought with Health Insurance, wrapped up things at work in prep for my disability and have had to come to terms with the fact that whatever that minimum amount of money I make on disability, will somehow have to suffice and understand that hopefully we're talking SUPER SHORT TERM (like 2-3 months), but nobody really knows. 

So that's work and finances. Let's assume there's limited to no stress there as it is what it is. 

Then there are friends.

So many friends.

Friends that offer to do things and actually follow through.

A community of people who have us set up for meals beyond our wildest dreams. Friends who want to visit but can't due to my circumstances, Friends who check in and want to talk, but I sometimes feel too fatigued to reply.

CLOSE LIFE FRIENDS who are throwing Bar and Bat mitzvahs specifically in the upcoming months that we will likely need to miss. One we missed tonight that I am still torn up about. 

How do you cope with that?

Then family.

How do you repay a sibling for saving your life?

My GOD if I knew of the extensive testing that went into vetting a donor, I never would've allowed it and pushed for alternative methods of treatment.

how do you thank them?

How do you repay your family for just always picking up the phone, knowing there's a sobbing mess on the other end of that phone. I'm not a picnic to talk to these days.

I got off a phone call with my father today. Prior to the call I thought I was fine, but I was asked a question and I totally snapped. I reacted so poorly and harshly to a simple question that if I was in my proper emotional state, wouldn't have been an issue.

But instead, I blew up. and feel profoundly disgusted over my behavior.

Did I apologize? sure. But it doesn't take it back, people.

That's why you can compose any email you want in the heat of the moment, but prior to sending it, walk away and come back to it 30 minutes later. See if you still want to push that SEND button. likely you wont.

I'm not allowed to help around the house. I can't even move a chair. My wife wont let me and I'm just left sitting here.

ALL OF THIS GUILT!

I wish Guilt was the only emotion I felt at this time, but in reality, I feel a number of dark emotions at this time:

Guilt (thats at the top)

Self Doubt (Am I making right decisions? Can I trust my own body? I didn't even know I was essentially dying 3 weeks ago!)

Anger (that this is happening)

Sadness (there's lots of that)

An overall feeling of being pathetic and allowing this to happen (I'm working with my psych on this one, I promise)

And straight up - FEAR. That's a big one too...but guilt is still the winner.

I'm working with my Psychologist to really not only see the BAD (BLACK) Emotions but to also see the GOOD (White) Emotions of excitement to start treatment, knowing there is a cure, knowing it's going faster than anyone anticipated, etc, to get to a place of GRAY. Acknowledge the bad, it's there, but there's good too.

I'm trying. But it's hard.

And my blowing up at others for no reason is not helping me feel very good about myself.

I miss lifting, I miss peloton riding, I miss being active, especially with my kids.

I miss my natural stress relievers.

I miss spending time with my family instead of scaring them and likely scarring them with what I am going through.

Maybe tomorrow will be better. I have my doubts, but maybe.

It's already "late", which means it's time to take more medication soon and mentally prep myself for whatever needs they're gonna want to stick me with tomorrow.

So - until then, it's me, my Custom Pandora station (Blackbird live version playing currently), a cocktail of prescribed and fully legal pills and of course uncontrollable crying that's going to propel me through the rest of this stupid day and eventually put me to bed.

Thanks for listening.

Thanks for reading.

This is me.

This is real.