Waiting for the Summoning

Sometime soon we are gonna get summoned (well, I will be summoned) up to Rochester to start testing my organs and to make sure I am mentally sound enough to go thru this transplant.  I am not worried about either thing.  I have 3 gall stones, but they supposedly are not an issue according to Christopher, my PA.  Other than that, I have Hashimoto’s Disease, so I have an underactive thyroid, meds keep that in check.  My organs work fine and have always worked fine so I don’t see a problem there.  As for my mental state, I may be bipolar, but it doesn’t mean I am crazy (most of the time).  I understand what is happening and what they are gonna do.  I have read all the paperwork and books they gave us.  I am ready physically, mentally, and emotionally, can’t ask for more than that.

I’m in a weird place mentally at the moment.  I’m not up or down.  (I told ya my down wouldn’t last very long)  I am just existing right now.  Which is okay.  Can’t dwell on the scary parts, cant blow em off either.  So I am somewhere a little lower than my normal hypomanic.   I have little interest in doing much of anything right now.  Fatigue is up, sleeping a whole lot.  But I am not thinking doom and gloom.  So I am not depressed.

We have made 1120 dollars out of our 10,000 dollar goal on the GOFUNDME campaign.  I can’t think of a good update that doesn’t sound like I am trying to guilt people into donating.  I don’t want to be that kind of person.   Nothing is happening right now, so updating is difficult.  But on the other hand, I want to keep it in my circles head, so I kind of need to update.  Oh well, I’ll figure something out.

I have an appointment with my shrink on Friday.  Can’t really afford it, but need to talk to someone and this kills two birds with one stone so to speak.  He will chat with me about this and he will write prescriptions as needed.  Dr. Fialkov is a really nice guy, besides being a good enough shrink.

Gonna have yet another scar on my torso.  They have to use a port (I prefer PICC lines) to give the chemo and do the transplant.  So a 3 inch scar on my chest is what I will be getting.  Yay rah.  More scars.  The port will be used to give the chemo and take blood draws and give any other meds they want me to have before the transplant and then used for the transplant itself.  Supposedly you can see the little stem cells going thru the tube.  That is kinda cool.

They took a huge (relative) chunk of bone marrow out when they did the bone marrow biopsy at Mayo.  The hole in my flesh above the hole they put in my hipbone was considerably larger than the ones done at Mercy.  It also ached more.  Didn’t ache for any longer, just was more uncomfortable.  But I will tell you what, they can knock me out for a bone marrow biopsy anytime.  Didn’t have to hear commentary, didn’t have to feel the pressure, all good things.  Yeah, it ached more after, but hey it was much more pleasant during.

I wonder if my brother got the testing kit from Mayo today.  They sent it last Friday, it’s not that far, but there has been serious weather between point A and point B in the mean time.  The sooner he gets that and the sooner he sends it back to Mayo, the sooner we know if he is a match.  The sooner we know if he is a match, the sooner we know if we have to do the national registry route.  I REALLY hope he is a match.

Everything else is held up on finding a match.  EVERYTHING.  No use in getting me ready if they don’t have a donor.  Makes perfect sense to me.  So, if my brother isn’t my donor, Dr. Alhkateeb will have to initiate a donor search in the “Be a Match Registry” also know as the national registry of bone marrow/stem cell donors.  This search is expensive and not covered by my insurance.  Anyhow, that search can take up to a week or so to find a match.  They found me a match in 2015, but that match is no longer valid.  So a new search will be in order.  But basically nothing else happens until they find me a match, be it my brother or some stranger.

I’ve given up on going to my brother’s 50th Birthday party.  Got him a cool gift though and it’s gonna sit in his house for months.  So, where I can’t say it’s all good.  I can say, at least he gets to think about it every day and try to figure out what it is, and that is good.

The 30th year High School Reunion is pretty much a NO GO too.  My system will still be messed up pretty good to put myself in a room with that many people.  I mean I would love to go but September is probably too soon.

Thanksgivingfest and lunch the day after.  By the end of November I should be (read should be) able to make the trip over to see my mom and down to see the Gang and see Andi and Shawn on the day after for lunch.

Thank you all for reading this babble.  Like I have said many times, I write this for me, but share it with anyone who wants to read it.

Author: Jeff Campbell

I am 50 year old guy, who beat blood cancer but is getting his butt kicked by bone marrow cancer. At this point it appears I am dying. Married and in love with the most wonderful woman in the world (27 years). She has stood by me thru a lot of crap and I love her so.

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