Wednesday, September 14, 2011

Aside from that Mrs. Lincoln, how was the Play?

Okay, I knew today would be busy.  Made a little tight on the schedule, but hey, I'll go with it.

10am- Appointment with the surgeon who installed the "drain line" in my gut.  "Hey doc, it's still leaking fluid around the hole.  A pinkish/yellowish fluid.  I change the dressing twice a day and it's saturated.  It's sore and tender"   Doc- " Looks fine, Not infected and that's normal, just keep changing the dressing and if it's still leaking in two weeks come into the office and I'll look at it."     Sorry, I don't think I should be leaking.  I like having all my fluids inside me.  I'm funny that way.

11am - Appointment with GP.  Now this will be fun.  See they put me on Steroids when I was in the hospital.  I'm (am/was) supposed to take them for either one or four days after chemo (they couldn't decide), however, these makes my blood sugar go crazy.  (as in the high 300's). They gave me a starter kit with a Freestyle Freedom Lite tester and a weeks worth of strips, finger pokey things and needles.  I used four days worth while in the Hospital.  The day I got out I went to Wal-mart and turned in the prescription "Be about an hour".  So I wandered around W-M for an hour.  (No P-O-W sightings to report).  Now my Oncologist wrote the script for the Insulin (Lovemir (sp)) Pen, and the GP wrote one for the testing supplies.  (Right hand meet left hand) Come back an hour later.  "There's a problem, we've called your doc.  Can we reach you at this number?"  Sure, fine, call me when it's ready and I'll come back and get it.  I can go another day or two.  Well next day, no call, so I call the doc (GP). They have a new call center which is designed so that they never have to actually talk to the patients, because, that's just ooooh Ick.  Anyway, I leave a message.  The next day (and yes for those following along, I'm out of test supplies at this point), I get a call from a nurse.  She's not sure where I can get plutonium, but is pretty sure that Walgreens doesn't carry it.  Oh, that's not the message I left. Insulin, Test Supplies, Wal-mart.  Okay, got it now.  She'll call me back. 

She doesn't.

Which puts me in the GP's office at 10:55am, (having filed out the same four forms with all my Insurance info again, for the 87th time this month.  Seriously, it that all some of you do is copy blank forms for me to fill out.  And I'm going to wear my insurance card around my neck from now on.)

My phone rings:

507 area code....  (I live in the 630/312/847/708 area code.  507 I don't recognize)


"Hi, this is Jamie at the Mayo Clinic Stem Cell Transplant Center.  When can you come in for your transplant?"


'This is Jamie at the Mayo Stem Cell Transplant Center, we need to schedule your transplant, when can you be here?"

"Wait, what?!?!  Since, Errrrr, ummm, what, hold on.."

Just for clarification, Jamie's tone came across as "If you're not here tomorrow, you will die!! Die!!!! DIE!!!!!."

"Hey, this is news to me.  In fact, I'm literally walking back to the exam room of my GP office's as we speak.  Can I get back to you, because no one has really talked to me about this yet."

"Okay, can I give you a call tomorrow to get this scheduled (again with the if you delay one more second, you will die tone of voice)

"Yes, fine, please."

So now I have even more to discuss with him. 


He tries to go get my oncologist on the phone, but he's not in today.  (Wait, it gets better).  He also can't get my nephrologist. 

He checks with the nurse and the insulin problem is that my insurance doesn't cover this meter/test kit.  (It's crap like this that makes people start taking fucking hostages.)  So he write a script for a different tester, but then give a free sample packet of the "wrong" kind of kit.  Whatever.
I'm not doing well at this point.  I'm barely able to hold it together.  My world literally just blew up.  And I can tell I'm sucking big wind.  Last week, my hemoglobin was 9.6. Which is bad.  I should get Aranesp when it gets below 10, but because there wasn't an order for it last week, the nurse wouldn't give it to me, (nor did she go check) after I pointed it out to her on my lab results.  "Hey, I'm below 10, I get a shot!!"

When I would walk my heart would be on fire, my leg muscles burned and cramped, not charlie horses, but the muscles cramp and pull so hard and so tight, it feels like they are being ripped off my bones, for minutes at a time.  It's an indescribable pain, a paralying pain.  I can only lay there on the floor in pain until it passes.  So physically, this week has sucked.  I'd get dizzy if I moved to fast or climbed up the stairs from the basement.   I couldn't get enough air. And then collapse onto the floor in muscle ripping pain.

Fed up, I say screw it and head to the Oncologist.  If I can just make it there, I'll get some Aranesp and I'll be able to breathe.  Yeah, I'll just live under the covers until I wake up late Wednesday, but I can see a finish line.  Oncologist, treatment, home, sleep.  Dog, you're on your own for the next day.  I'll leave the back door open for you and feed you when I get up to go to the bathroom

I get settled in and talk to the nurse.  Heather.  G-d takes care of drunks and fools and thus I am dually blessed.  Heather came from Mayo.  She worked in the Stem Cell Transplant Center.   Finally, I ask questions, lots of questions, not enough questions.  I need to know what will happen to me, step by step, how it works, where I stay.

Really I'll need a caregiver(s) to be with me for the 100 days I'm up there.  No, it's just me and the dog.  No, I don't have family.  I mean I do, but my parents are in their 80's my mom is deaf and my dad blind, they can barely take care of each other and sometimes my dog.  Yeah, I'm going to have to setup a roster, a schedule, recruit family and friends, I need to call my insurance company, whadda mean I need to rent a place up there for three months, I'm there.  You mean I can't leave?  Come home?  What about after?  A year, really, no sick kids, no sick people, NO HUNTING!?!?! 

I had my fall planned.  Savnnah, Georgia; Hunting and Camping with my son. Two Weeks of Deer Camp, Taking a couple of new people hunting and shooting.  I just wanted to make to December. 

If only I could have made to December. 

No treatment today because with them wanting to schedule a Stem Cell Transplant, you don't know the timing.  Fuck me.

"Draw blood."

"I said "Draw Blood", I want labs done.  I know my hemoglobin is low and I'm hurting."

"Please draw blood and check my hemoglobin.  I can't breathe."

They do and it comes back 8.8. 

I knew it was really low.

"What do you mean you can't give me Growth Factor (Aranesp) if they are going to do a stem cell ?" 

"They aren't going to do it tomorrow and it I don't get my hemoglobin up, I won't make it to Mayo for a Stem Cell.  Where's Patti (the head nurse)!!!"

Patti takes one look at me and says "Give him the shot". 

I get my Aranesp.  I get some answers.  But now I need to find people that can go to Rochester and spend some time with me.   So if you're not doing anything and want to spend some one-on-one time with yours truly.  I'd love the company.   (I think my insurance company will cover some/most/all of caregiver expenses, but I'll find out when I cal them tomorrow.) 

You won't have to do anything but 1) be there 2) call 911 if needed.

Thanks for reading.


  1. WTF???

    I mean Minnesota is nice and all, but you have to MOVE there?


  2. Oh, man, this is a helluva fix. Hugs to you.

  3. I can't quite conjure up any focused snark to aim at your doctors or at fate in general.

    All I can continue to do is pray for you.

  4. What a story! :) I hope things work out for you and you get some more organized medical help too.

  5. NOW it's time to take hostages. To Minnesota.

    Did anybody ever explain why you found out about your transplant two states away for the first time when the Mayo freaking Clinic called you? That's insane.

  6. wow... hard to find something to say that isn't either:

    a) total snark
    b) just plain dumb
    c) obnoxious
    d) or any combination of the above

    I really hate things have to suck for you so badly.

    Prayers going up on your behalf.

  7. Jaysus... That is a bunch of um... er... CRAP When/where will you need coverage?

  8. "When I would walk my heart would be on fire, my leg muscles burned and cramped, not charlie horses, but the muscles cramp and pull so hard and so tight, it feels like they are being ripped off my bones, ."

    I only made you carry Barkley's pooper scooper once and you're trying to get out of again aren't you?

    Seriously, I'll call later. If you don't want to talk, don't answer, I totally understand. My best friend lives in Minneapolis. He shoots with a number of us and would be available if you needed something. Rochester is only about an hour away from where his family lives. they're good folks.

    We'll talk more, this is a lot for you to digest. But whatever you need, we'll all be there.

  9. Thanks for an update by phone. I got a hold of Bobbie. . More later.

  10. I guess it could be worse. If you don't believe that, I could send you my ex-wife.

    What she lacks in usefulness she makes up in nastiness. And she isn't cute.

    Why does she live with me? Because her (next) husband is a good fellow, and a disabled vet.

  11. I love non-communicative docs. They are my favorite. Brigid will hook you up! Sending happy thoughts your way. Blessed be brother, even if sometimes it doesn't feel so blessed. My rule is if I feel the pain at least I am alive to feel. Shitty rule but a good one sometimes! :)