The Nader

It's 4:50 a.m. on the tenth of August in the year 2012 and I am still alive.  Despite deadly cancer, blood infections, exposure to maximum limits of radiation, pumping my body full of chemotherapy poisons, becoming an invalid through weight loss (twice), working through a bone marrow transplant and the associated graft versus host disease, and having more transfusions than I could guess at.  I'm something pretty Frankenstein if you think about it.  But I, as was he, am alive.  I'm not so much me as I once was, physically or mentally.

Since this all began last March I've had to first deal with the possibility that I was going to die.  Of course, we all are, but no one should have to spend their time believing it will be soon.  The idea that staggered and pained me for more than a year was the harm that my death would bring into the lives of Emily and my boys.  I've finally moved beyond the pain of that idea and accepted that I've done everything I can do in preparation for it, again, both physically and mentally on my behalf and theirs.  I've created videos, I've created financial stability, I've written letters, and I'm still alive!  I've worked very hard to stay alive.  Hopefully no one mistakes that hard work as a selfish desire on my part.  Were it not for my desire to protect these few I love most I would not have had a bone marrow transplant and I would instead be enjoying chemo induced remissions until those quit working.

So I haven't had any real news in the past month.  So I haven't shared any.  Well, that's part of why I haven't shared.  There's always news.  It's just that, in medical parlance, I've been doing nothing good, I've been approaching one nader after another.  Bottoming out is what I've been doing.  There may be good news though.  I believe my weight may be stable at 137.  If it's stable I can get it to climb.  I was started on 75mg of prednisone and I'm below half that now.  The Cushings is pretty ugly right now.  I have a giant extra chin and my face looks like a huge potato, the hump on my neck is way sexy.  That should all go away too, once I have functioning adrenal glands, perhaps in a couple of months.

More condensed detail: I'm receiving platelet transfusions every 3 days, I don't know why they won't do two bags at once.  I'm visiting the hospital clinic in SLC every week for updates, they do x-rays every other week.  I talked them out of x-rays every week.  I take roughly 35 pills a day along with 7 oral medications and a liter of fluid with magnesium through my central line over 2 hours.  In between that I am attempting to hit a minimum of 3000 calories each day.  My days are a blur of medicine, food, and lying around in bed waking and sleeping at odd times.  Lately I wake up at 4:30 and can't sleep after that.  Today, that netted you all a post.

What does one do to enjoy this whole process?  Not much.  I've converted my bedroom into a very functional place.  I have 20 ways to entertain myself but only one way to be even sort of comfortable.  At my weight and with no platelets a fold in the sheet under my body causes me pain.  To that end, I don't generally wear any clothes in bed and I often have to adjust the sheets underneath me.  Reminds me of the story of the princess and the pea.  So that's my day.  Me.  Naked.  Chilling in bed.  Here's to hoping we're headed for the zenith, starting now.

There are still so many people doing so many kind things for us.  I would hate to miss listing a name so I won't list names.  But, you know who you are and what you've done and I want you to know how much it means to us to have your love and support in our lives.  I've had very few visits over the past month as I generally don't feel well enough.  However, there are those who've been turned away often and I just want them to know that I'd love to visit or take calls but most of the time I don't because I can't.  I would love to visit with my friends and take their calls and I will as often as I can, hopefully with increasing frequency.

Let's do something different for the picture of the month.  This is my beautiful sister Terri and me as children: