January 17, 2013

DAY OF THE TESTS

Just got back from the battery of tests to make sure I don't have something that would prevent or put off the BMT.  Had 2 CTs, Echocardiogram, EKG, Chest X-Ray and Pulmonology test (don't know the name but it was the long version of the standard test). Echo test was interesting.  For those of who may not know it is an ultrasound exam of the heart.  To have the exam you have to lay in a position from which you can see the computer screen.  The tech I had liked to explain what I was seeing so I got an interactive lesson in heart function and evaluation.  I believe all the tests went well.  We find out for sure on the 29th.

I'm not feeling as scared as I was.  I'm still having trouble going to sleep at what most people consider a decent hour but when I was young (yesterday both in my mind and like the song) I was definitely a night owl.  That seems to me a trait of many architects, of which I am one. 

I've joined a couple of cancer sites on the interwebz and have "talked" to some others with this wonderful disease.  It seems with most of them the Drs. are going with chemo or "wait and see".  In my case while a lot of my numbers ( blood cells, counts, etc.) are OK my neutrophil count is on a steady decline.  There is also an issue with my cytogenics report.  I vaguely understand it.  If you want to discuss details then leave a comment and I'll get my wife to respond. She becoming quite fluent in doctorspeak. If I keep going with the disease long enough she will be licensed to treat CMML patients.

Pauline has been cleaning the kitchen all day so we are going out to eat again tonight. 

Any suggestions?

Boone

January 16^th, 2013

 DAY OF THE MEETINGS

Yesterday I turned 60.  Some friends came by and we went to dinner at a most excellent restaurant.  Best creme bru lei I ever had.  A good time was had by all.

Today was meetings all day.  Met with the transplant coordinator, dietition, pharmacist, etc.  Lots of information.  Nothing really to pass on.

Dinner tonight with some other friends, one of which is a world class cook.

On the whole not a bad day.

Boone

PS from Dinner:  Lady G made a breaded veal so thin it covered the entire plate.  Not one crumb was left.  Soooooooo Good.  Thank you.

January 8^th, 2013

This day has been scheduled for a while.  The day’s date has of course been in everyone’s calendar since the current calendar started. It’s been in my (our) calendar to meet with my Oncologist, Dr. S, for a month or more.  Today it arrived.  And while I’ve known for months now that it was coming, as Melanie said so well, “Hearing the news ain’t like being there”. 

Today they scheduled by Bone Marrow Transplant. 

I have an official date for “Day Zero”.

All that stuff I said before about “the initial shock, denial, and other assorted emotions have come and gone”,……………………………….. well they’re back with a vengeance.

I’m scared.

I’m not sure exactly what I’m afraid of.  It’s not dying; at least I don’t think so; at least not exactly.  There is all that stuff I planned to do, the stuff I want to do. I still have albums to convert to CD’s.  I still have Radio Boone presentations to create. I still need to get back to playing chess.  I still have that novel to write.  I still have to figure out what the novel is going to be about.  Six weeks is not enough time to get it all done. 

So, to quote Tom Beringer in Major League, “There’s only one thing left to do, Win the whole fucking thing”.  (You may know already but if not and this writing continues then you will learn that I quote books, songs and movies a lot.)  I think what I’m afraid of is that I’m not sure I have what it takes win it.  Rest assured my plan is to beat this disease and get rid of my psoriasis at the same time.  The odds are 80% that I live thru the transplant and about 50/50 that I make it from there. Those are odds I can win with.  I hope I have what it takes to get there.  I’m just not sure.  When it was off in the future, something to be scheduled, something not in the calendar then it wasn’t quire real to me.  Now it is here and it is all too real. 

And it seems to be happening so fast.

I hope I can keep up.

So I guess it’s time to strap on the big boy pants, stop crying, and get ready to do battle.

Maybe a nap first.

Hope I can sleep.

I’m scared.

Boone

October 18, 2012

 BEFORE THE BMT

 Pauline and I met with Dr. S yesterday. He showed us a chart of some of the blood count numbers, particularly the neutrophil count, which have been on a steady decline over the last months.   That being the case he want to proceed with the BMT as soon as we can.  He’d rather go forward than wait for the reversal of the colonoscopy because that would take months.  Pauline and I agree.  It also has the added bonus of letting the nurses deal with the colonoscopy bag part of the time.

My three siblings have been tested for donors and through the grace of whatever power you believe in my sister A is a match.  She wasn’t tested at first because she was diagnosed last year with Phase Zero Breast Cancer.  She is under treatment and doing very well so since it was Phase Zero she was tested.  When my first two siblings didn’t match I had just assumed A would not either.  Mentally I was trying to gear up for a long donor search from the general population.  Pauline and a friend who went through a BMT with her husband are still planning a donor drive. 

I was alone in my hospital bed recovering from the surgery when my sister called.  I will never forget it.  She said, “Well I am your donor match.”  I could not speak, just burst out crying.  She joined in a bit and then asked if I would call Pauline or should she.  I managed to communicate with her enough to ask her to call Pauline.  Then I hung up and had another good cry at the wonderful implications of the call.  I’m sure you know that a sibling donor helps with the odds of transplant complications.  And it’s the complications that kill you.

So now my task is to gain weight.  The first of this year before the onset of the diverticulitis and complications I weighed 155 lbs.  After all the recent events I weigh 125.  It’s what I weighed as a skinny little geek in high school.

Boone

INTRODUCTION

Date:  October 2012.  A few days after coming home from emergency surgery.

 Hello.  My name is Boone and in March of this year I was diagnosed with CMML, Chronic Myelomonocytic Leukemia.  It is now October so the initial shock, denial, and other assorted emotions have come and gone and lots of decisions have been made.  One of those decisions was to write this blog.  My wife and I have written a blog before after her father was diagnosed with Lewy Body Dementia (livingwithlewybody.net).  She did most of the writing and while the blog was ostensibly to help others deal with what we were going through, I now know that the writing helped us as much as it did anyone else.  Thus my decision to write this blog.  I hope it helps some of you, should anyone ever read this.  I feel certain it will help me deal with the things to come.

As I mentioned it has been a few months since my initial diagnosis.  A quick history of that time is in order so that you understand where we are at this point.  Back in January Il had my regular annual physical with Dr. H.  The blood work showed an elevated level of “immature white blood cells” so he said he wanted me to see a hematologist.  I figured, OK no big deal.  Then the paperwork for the hematologist arrived in the mail.  It came from Tennessee Oncology.  This did not sound good but without too much alarm I kept the appointment but did not bring my wife, Pauline.  Dr. K’s first question was, “Where is your wife?”.  His diagnosis was Leukemia, probably CML.  Bad but very treatable, just take a pill every day, live long, and prosper.  I passed the word on to Pauline and we kept the next appointment together.  After a few more visits and lab tests we arrived at the final verdict;   CMML, no pill, just odds of survival and not really good ones for someone about to turn 60.

In the meantime I had my 5-year colonoscopy from Dr. W.  No worries thanks to Demerol and Valium but he did encounter a spot through which he could not pass.  CT scan showed some inflammation but basically, “Don’t worry it’s not unheard of”.  Next thing you know I’m having pain in my lower abdomen and it turns out to be diverticulitis so I begin a couple of weeks of antibiotics. Still some pain after 2 weeks so add a week on the pills.  The diverticulitis clears up but something is still not quite right.  By this time I have lost 10 pounds and I’m already a thin guy. Dr. K has Dr. W do another colonoscopy but we get the same result so they schedule me with a surgeon, Dr. R, to remove the diverticulitis offending section of intestine. In the meantime Dr. H sets me for a bladder scan with Dr. B.  As prep for the scan Dr. B schedules a CT scan. On a Friday morning I have the scan and that afternoon my wife takes a call from Dr. B.  He says Dr. H wants to see me right away and also to call the surgeon.  Pauline talks to Dr. H because we can see him right away.  She almost forgets but then does call Dr. R, the surgeon.  He says he looked at the colonoscopy and has no concerns.  She tells him he needs to looks at the morning CT scan.  He agrees and says he’ll call back.  He calls back around 4:00 PM on Friday.  “Get to the ER.  He needs surgery now!” 

To summarize then until now, about three weeks later:  Our friend Bill happened to call the moment Pauline hung up from talking to Dr. R.  He immediately came over and took us to the hospital.  Dr. R removed two sections of intestine and a bit of rectum to boot. He cleaned up a large infected abscess and installed a colonoscopy that has what he calls “a beautiful nipple”.  By around 9 that night I was in the ICU flying high on morphine.  I’m still sore, still haven’t made it back to work, still skinny as a rail, and not at all comfortable with this colostomy bag but it’s temporary and I am alive and getting better every day.  A very large thank you to all the folks who had a part in making that the case.

So I’m on the mend now.  I’ve come to consider this time as training for the upcoming battle to come with CMML.  More about that in the next post.

There is one point I wanted to make here. Some of you, if there are indeed any of you out there, might wonder if I hold any animosity against the doctors for not catching the intestinal problem before it became an abscess.  The answer is “No, absolutely not” and I have spent time thinking about it.  The treatment and actions of each doctor made perfect sense given the information at hand.  All of them were in communication with each other and they kept each other up to date on my situation.  If I had to do it again would I ask for a CT scan earlier to see if there was something developing? Sure but I am equally sure that these doctors will as well.  If anything I want to sing the praises of Dr. H for catching the white blood cell count so early.  Without that I would have gone through all the other events just the same but might not yet know that it was training for some much more serious to come.

Boone