Medical and Mayo… oh my

So, I was feeling sickly earlier today, thought maybe my platelets were low enough to need a infusion (13 or lower).  They were 17 today.  The nurse lady said to come back Monday and get checked again.  Problem is if I am checked on Monday, I probably won’t be able to get platelets until Tuesday…. and Tuesday we are heading to Mayo.  There are bunch of if/then statements coming so hold on.  If I get in early morning Monday to get my blood drawn, then I could potentially get platelets late Monday afternoon.  If I don’t get in to get my blood checked until late Monday, then I could possibly get platelets early Tuesday morning and just be groggier than crap the whole drive up (Benadryl before platelets).  If I blow off getting checked on Monday, then Mayo will have to deal with me on Tuesday/Wednesday, but I run the risk of going WAY too low and potentially having serious problems or even death.  So waiting for Mayo to take care of me is kind of off the table at this time.

Dr. Wehbe, my local cancer doc told me (and Teresa) that we could just stop in for a blood test whenever we deemed it necessary.  Today I was informed by a nurse that THAT is not how they work.  She said that I needed to make an appointment and see a nurse and that is how it always works.  Well, given a choice, I’d default to Wehbe’s way over the nurse’s way, much easier on us.  So, I appealed to a higher source, I appealed to Wehbe’s #1 nurse.  Kerry has always been square with us, straight up, this is how it is.  Gonna find out who is right and then when Wehbe is wrong, try to make an appointment for first thing Monday morning to get labs done and see a nurse.  The whole part of just stopping in for lab work was to avoid the copay.  50 bucks is a significant amount to be told, come back next week.  So Wehbe was doing us a solid by telling us to come when we want and just get labs.  Oh well, we shall see when Kerry replies back to my email.


Mayo visit #2 is less than 1 week away.  Labs on Tuesday, then meetings all day Wednesday.  That is all that is in concrete.  At this point, all I do know (according to Dr. Shin, my hematologist/oncologist at Mayo) the transplant team will ask me a bunch of questions to determine if I am worthy of a transplant.  I don’t smoke, I don’t drink, I don’t do illicit drugs, heck, I don’t even cuss that much.  Yeah, I am disabled, but turn me down for that and watch me sue their butts for discriminating against a disabled person.  I am a good person, so this should be a no brainer for them.   I have about 100 questions for them though.  Most I am sure they will answer during the description of what they are going to do (the pre transplant, transplant, and post transplant plans).  But some I think are intelligent questions that will need to be asked.  These guys will also determine if Mayo visit #2 is overnight or a week long or so.  (again according to Dr. Shin) There are a bunch of tests the run over several days.  We can handle either way, it’s all good.

Have a meeting with a social worker on Wednesday afternoon.  Not quite sure what she is going to do for us.  But we will go to that meeting and talk to her about whatever she wants to talk about.  I’m sure it’s just standard procedure that EVERYBODY going thru this type of transplant talks to a social worker.   I hope that is the case.

Then after the social worker, I get to see Dr. Shin again.  Not sure why I am seeing him again.  He is not part of the transplant team as far as I know.  I guess he wants us to know that he is still technically the man in charge of my treatment.  I will give him props for ordering my last biopsy sample and running the genetic stuff on it and finding the genetic markers.  Well, he ordered the sample and had someone else run the test and find the results, but it was his idea, so kudos to him.  We will go to see him with no reservation but I might ask not to have Dr. Pirralta involved, I just didn’t like that man, and he is the top dog, head cheese, man in charge of the department.   If Dr. Shin can’t act without Dr. Pirralta’s ok, then I guess I will let him be involved.


I’m hoping in the testing they do not have to do yet another bone marrow biopsy.  My poor hip bone has enough holes in it.  I have had 7 or 8 total since April 2015.  Had one as recent as December 8th.  I just don’t think it’s necessary again.


I forgot to call the vet today, wait, its early still got time.  I need to make sure they will have room for Pucky and Mojo should we have to stay a week in Rochester.  This is part of what sucks in not knowing how long we are gonna be up there.


I’m hoping the weather doesn’t suck up there.  It’s been a mostly mild winter so far in Iowa, hoping that Minnesota didn’t get all the crap that should have hit us.  That would make our trip miserable.  But the good news is, I know there is a delivery place that charges 6.95 plus tip to deliver from a large number of restaurants in the area.  My mom and I used it both nights we were up there before.  Just makes dinner really convenient.


Yay, Kerry emailed back, Dr. Wehbe’s way is correct.  The nurse is wrong.  The lab just has to send the results to Dr. Wehbe wherever he is.  Should be a no brainer for everyone involved.


My Theme Song


Author: Jeff Campbell

I'm a 45+ year old AML survivor, now with MDS. About to go to Mayo for a Stem Cell Transplant. I also have bipolar disorder. Cancer and bipolar make for an interesting life sometimes. I have a wonderful wife of 25+ years who has been with me thru it all. Even with my problems, I pretty much love my life.

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