Alive and Kicking

My apologies dear readers (if there are any left).

It seems as though I have not updated this blog in over a month.  A lot has happened – mostly good.  After postponing surgery, I decided to just relax and have fun before and during the holidays.   Fun I had.  I came up with a billion  (okay 4 or 5) blog posts in my head but apparently I neglected to type them out.

Never fear, I will update on those fun things over the next week or so.

Nothing happened until this week on the health front.

I DID make it through my cardiology tests.  Those were good times.   I saw the cardiologist last Wednesday for the results and if you can believe it, my heart is completely healthy!!!

Can I get an AMEN?  

AMEN!

This news was astonishing because heart disease runs on both sides of my family.  My dad had heart disease, his sister had a heart attack, my maternal grandpa died from heart disease at 57 and my mom has all kinds of heart problems.  So I figured it would be a no-brainer that something would be a problem for me, but it seems not.

So that was the good news for last week.

On the not-so-great but fixable news, my blood sugars are all whacked out again.  Now instead of having counts in the 300s, my counts are starting the day at 150 (good for me) then crashing down to 60’s and 70’s (so I’m chugging glucose gel) and then going back up to the 170s.  So I feel all crazy.  I’m pretty sure I’m over medicated.  I called my endo and she told me to reduce one of my insulins from 20 units to 18 units..  I didn’t tell her I had already reduced it to 10 units.  She had increased one of my medication doses to twice what I was taking but didn’t issue a new prescription.  Because I don’t see her until the 22nd and I can’t refill my prescription early, I had to halve one of my meds for the next 10 days.  It’ll be interesting to see what my sugars do.  I don’t recommend doing this on your own. 

I got my labs done last Wednesday and it was the normal crap.  I’m having issues with feeling like crap when my hemoglobin is in the low 8s now where before I didn’t feel like that until the low 7s.  I’m hoping its the weather changes that are causing that as I’m very sensitive with temperature changes.  

Everyone around me has been sick and I’ve managed to stay pretty well.  That’s a good thing.

I saw my hemo on Friday morning.  My discussion with her was going to be about re-testing the Neupogen (the white cell booster) and testing the HLA platelets.  She finally told me how Neupogen works and what it is doing to me.  It’s not good.

A little background (as I understand it):

Each type of blood cell (red, white, platelet) has stem cells. Because I’m Aplastic, I don’t have a lot of these stem cells.  The ones I do have, enable me to only have transfusions twice a week and not have to have platelet transfusions.  

The Neupogen is supposed to grab onto the stem cells that are on the white blood cells and pump them up.  It should give them a temporary extra boost that would get me through surgery.

What it is doing in me, is instead of finding the correct type of blood cell (white) and boosting those stem cells, it is stealing the stem cells from my platelets causing my platelets levels to go down and not really boosting the white stem cells.  Since I only have so many stem cells to begin with, having this medicine steal my platelet stem cells could result in killing all of the stem cells in my platelets.  Which would be a bad thing.

I can’t have this medicine at all.  Even to go into surgery.

I have a huge decision to make:

To operate or not to operate?

 Going into surgery with no white cells and uncontrolled diabetes seems a bit dangerous.  I could come out fine or shit could happen but given all my health issues, I’m guessing shit would happen.  My quality of life is pretty good right now so I’m scared to rock the boat.

But if I took the chance and everything went great, getting rid of the cancer would definitely improve my life as well.

My hemo pretty much agrees that I have to make a choice but both of my options are completely shitty.

I have a few doctors to meet with and some more information to gather before I make the decision.   If I seem a little quiet and depressed it’s because this is a freaking heavy thing to consider.

I’ll keep you posted.

As an excellent aside, my niece Lilli had her first gymnastics competition this afternoon and placed 2nd on vault, 2nd on floor, 1st on beam, 1st on bars and <ta da> 1st OVERALL!!  Such a proud auntie!

FIGHT ON!

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14 Comments on “Alive and Kicking”

  1. kkofron says:

    Thank you for updating! I am so sorry you are faced with having to make this decision. You are always in my thoughts and prayers.

    Like

  2. Karen Stember says:

    Wow Pam you continue to have to deal with so much. Glad you also have joys in your life to help you get through the dark times. I know you will eventually be able to make the right decision when you are armed with all the doc info. Yes, Fight on!

    Like

  3. elizabeth lamar says:

    With your knowledge, you could become a physician’s assistant. Wishing you luck. You deserve it. Happy heart! Did you watch the awards tonight ? A day of overcast and plane whooshes all day. Nice and quiet tonight. Best to you always.

    Like

  4. Lori Lewis says:

    Good to see an update! Was wondering what was up, was about to poke you in a few days to make sure all was well.

    GO LILLI! I read about her amazing performance in your Mom’s FB post, very proud of her.

    So sorry you have to choose between shitty, or shitty. So much to bear in mind while making these decisions. Any chance you could get all your docs in a room with you for a meeting about treatment course? I have to think that might provide more clarity…

    Stay strong, fight on. Love you! xoxo

    Like

  5. Barbara DiCarlo says:

    Thanks for the update. I know these decisions will be hard to make. I’ll send some prayers your way. Maybe it will help you. Take care, love Barbara

    Like

  6. Heather says:

    Your readers are absolutely still here, happy to hear you took some time for fun and play, but so saddened about the decision ahead of you. I second what Karen (I still want to say “Mrs. Stember”) said–you will arm yourself with all the info you need, and you will make the best decision. You haven’t gone through one step of this crazy process without fighting on for information, so I am sure this will be no exception. Sending you love.

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