It’s gonna be a long fall and winter

The results for the hone marrow came in sometime last night.  Weird, cuz they weren’t there at 7pm but were at 6am. Anyhow, the good news is no blasts, so it’s not the checmo resistant Leukemia.  That is a really good thing.  The bad news is there are 30% more larger then normal platelet producing cells (the larger cells don’t actually do anything), and markedly less of the other cells I need.  Which means, my MDS is back.  It also probably means more chemo and the DLIs.   But now that we know what is wrong, Dr. Alkhateeb should be able to form a plan of attack.  I wasn’t happy on the results that they said more chromosomal studies need to be done, cuz that means more bone marrow biopsies.  But hey, its just my hip bone right?

My mood has improved, I wouldn’t call it a good mood, but a better mood.  Knowing what is going on helps me process what it means to me.  And that actually reduces a lot of stress, which reduces a lot of depression.  Still a little depressed about the MDS being back.  It can kill me almost as easy as the AML would have.

What this means is considerably more time at Mayo in the near future. (hopefully not till after my party).  And some time with Dr. Wehbe’s people.  I would rather get the chemo up at Mayo but for Teresa’s sake (so she can work) we’ll probably do it here.   The DLIs have to be done at Mayo.  And anything weird Dr. Alkhateeb wants to try (not the he tries weird things) would happen at Mayo.

As far as I am concerned, the party is still on.  It is my top priority.  BLAH to cancer.  I need to have this party.  I’m sure you understand where I am coming from.  There is a really good chance that I won’t live another year.  It sucks, but it’s the truth.  I need this party to say good bye and tell my friends that I love them, disguised so cleverly as a celebration of life.  Just remember, I AIN’T DEAD YET.

We see Dr. Alkhateeb on Friday.  We should have the rest of the picture and the plan laid out then.  I’m actually glad I got Dr. Alkhateeb as my doctor, he may have a gruff bedside manner,  but he appears to know what he is doing.  Can’t ask for more than that, a competent doctor.  I have faith that he will know what to do.  But be aware, my faithful readers, that whatever he does will only prolong my life so much.  Since I got AML back in 2015, I have been on borrowed time.  If I make it through 2020, I am a statistical anomaly.

I’m not scared anymore, at least not for myself.  I kind of know what to expect in the future now.  It’s not pretty and doesn’t end well, but it’s my life and how else should it end.  I’m scared for Teresa.  We have been together so long and I am just gonna poof out of here one day.  She already hermits.  She’s gonna become the crazy chihuahua lady.  And never see anybody.  I worry about her.  Not financially, but emotionally and mentally.  I know she has her mom and her brother and sister.  And she will always have my mom and brother.  So she will have to make choice to be alone.  But I know, day to day, she will be lonely.

49 is too young to die.  I don’t want to die.  I want to live till I’m 80 living is some hospice driving some nurse crazy.  But that is not going to happen.   I am destined to fizzle out entirely too young.  I know I made some good friends along the way.  I have a super family.  I got the best wife.  I’m gonna devastate them all.

I have started looking into Palliative Care and Hospice Care.  I don’t need either as of now.  But that might change.  I don’t want to be more of a burden on Teresa, especially when/if I start falling apart (not literally).   Scary and sad stuff.  We should have adopted kids, so they would have to be taking care of this stuff.   Instead of me doing the research myself.

Well, that is it, MDS has returned.  Transplant was not the cure for me.

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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