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