A journey in life - musings of a doctor, husband, dad, grandad, brother, and friend

Fatigue has hit new lows -- I tell folks that my 'tires are deflated' but that is probably an understatement.  I received my last dose of chemo and what follows is some information for those who want to know... I have decided that the areas left after my chemo shots is more like an itchy, red, painful swollen wasp sting.  As Jan says, it looks like my arms and abdomen were part of a paint ball fight! I inquired about the cost of the AZACITIDINE (I get 150mg in two shots) ... Each two shot day is $2100 or $10500 per cycle...Insurance will pick up some of this - we'll have to see :-( ===========Here is some info on how azacitidine works for those interested========= Azacitidine is a member of a new class of drugs known as DNA "demethylating" agents.  Methylation of DNA is a major mechanism that regulates gene expression in cells.  When there is an increase in DNA methylation this can result in the blockage of the activity of "suppressor genes" ...

The first course of azacitidine is almost done.  One more day left (Friday) and then a month's break! Getting 2 shots (150mg total) in the subcutaneous tissue each day.  They've been pretty accommodating at the cancer center.  I realize that they don't mix up the chemo beforehand since if the patient doesn't show, they're out a lot of money since this therapy is expensive.  But... wouldn't it be nice to just come in, get the injection and go?   The first set of injections were in my arms and that last 3 were in my abdomen.  It's, I guess, a blessing that I have not been active and exercising (from the fatigue).  As a result, I have a little more 'insulation' over my abdomen! I looked at my abdomen after the shower and you would've thought I was getting vaccinated for rabies with the old vaccine (equine serum) which were delivered to the abdomen in a series which was not very pleasant at all!  However, the injections take about 3 min...

Jan and I are (pleasantly) overcome with the blessings and prayers all of you have bestowed on me and my family.  Thanks so much. I now have patients praying with me FOR ME!  A friend and patient gave me a book of bible quotes today and prayed with me!  An internal medicine physician (and a friend) - called from southern Virginia to offer prayers and mentioned he would bring my name up to his prayer group and still uses the bible I gave to him when he entered medical school! Given all  you all  have done for us, the chemo is a breeze.  The injections are subcutaneous with local reactions and some nausea but all controllable.  I told my chemo nurse as she was getting ready for today's abdominal subQ injections (in front of my fellow POD chemo patients) that she was going to ruin my belly dancing gig I had this PM.  She laughed.  Laughter is the best medicine sometimes!

Checked into the cancer center this AM for my chemo with the prerequisite lab work.  Counts are about the same and platelets holding steady at 94,000.  We'll see when the nadir (expected lowest counts) comes in about 2 weeks. All the staff are very nice.  I believe I threw the nurse a 'curve ball' by telling her I remember Dr Gemma telling use the azacitidine was to be IV.  She gave it subcutaneously - in each arm.   All of this took about 1 hour and 20 minutes which I count as being the NKOB (new kid on the block). Very tired today and just slightly nauseated (predosed with Ondansetron - aka Zofran) but not enough to slap on the transdermal patch they gave me (Sancuso - granisetron).  I came to the office late, but had, thankfully, a relatively light day. Can't wait to get home a kick my feet up. Had occasion to see the friends and family responses on FaceBook and this site.  What a blessing my family and I have to have such folks looking ...

[This is a little longer so I encourage to you to click on the "Read More"] Today, after prayer, and thanks to those who've prayed before this day, I revealed my diagnosis at church when my pastor, Marc, at Riverton UMC asked me to speak after I went forward for prayer. What follows is paraphrased: "... First I speak through the grace of GOD and Jesus Christ, my savior.  I want to thank all of those who've privately prayed for my family and I to this point.  I am coming 'out of the closet' (in a good way) regarding the diagnosis of... MYELODYSPLASIA*, a low grade cancer of the bone marrow [which I found out I had on Thursday]... I beseech that you pray for my family and I as I enter into this trial before me.  I also ask you pray for those may come to know our Lord, Jesus Christ, as a result of this trial...Thank you." *Read March 23 for more details on Myelodysplasia I realize now the release of not having to keep this among my family...

Sat down with (Dr) Nick Gemma with Jan this afternoon.  The results show: Myelodysplasia - this beats a lot of other possibilities -  More info on Myelodysplasia So... this is a low grade cancer of the bone marrow.  It isn't multiple myeloma, leukemia or lymphoma. Fortunately, the genetic markers done (during the bone marrow) are all without deletions, monosomies, trisomies and so I have a favorable prognosis.  I do have the following genetic marker: IDH2 p.Arg172Lys Course of treatment - initially chemotherapy -  Azacitidine  IV (for now) - 5 days in a row for one week of each month - we will see how this works. After a time, we'll get another bone marrow biopsy to see how it has helped (or not).  Nick Gemma thinks it may help my fatigue (and decreased exercise performance!) by allowing the normal cell lines to make a come back (red cells [primarily], white cells, platelets.  I start this coming Monday, March 27!  Pray...

Actually not too different which is good: WBC 2,300 - absolute neutrophil count 780 H/H - 11.5/33.2 (which is a little improved) Platelets at 87,000 (a little less but not critical) Still tired but have tried to give my normal bone marrow cell lines adequate building blocks (while not eating as much 'junk food') - iron, B12, folate and MVTs This may have helped to maintain my H/H (hemoglobin/hematocrit).  Still have the macrocytic indices with an MCV of 109 and MCH of 37.8 with moderate ovalocytes (this is on the red cell line - they are very large compared to most people). Got the stationary bike - over 300 lbs in the box - so I will break down the contents and move the pieces from my medical office to my home and try to put together over the weekend.  In the meantime, will try to enjoy March Madness and hope the Duke Blue Devils will continue 'peaking' in their performance.

I had a very nice conversation with Dr. Gemma by phone.  The preliminary results reveal that I probably have myelodysplasia based on the flow cytometry.  I only have 5% blasts (immature WBC's and occasionally cancer like cells) in my bone marrow which is good in many ways.  We did talk about chemotherapy and other treatments but we'll have to wait until next Thursday (March 23) to discuss the cytogenetic studies (which will be back by then).  This information will also give prognostic indicators.  We will have to see what he says.  Keep your prayers coming for my dear wife, Jan, who is my rock but she still shaken by this process (but you would never know that). She is such a great person.  Keeping in prayer. Life is a bit of bear these days since I am so fatigued - thanks to a great family, wife and great office staff, I am making it through the days fairly well.  Would love to get back in the pool and exercise.   I did order a stationa...

Never thought I would be on the other end of a biopsy needle!  Checked into the Winchester Medical Center interventional radiology suite for this today. The check in by the nurses was professional even if they were challenged with their EHR (EPIC). Having used Practice Partner for so long I have to realize that some EMRs make you work around the EMR (versus the other way around).  Oh well ( thank goodness that is not my problem).  The staff were very professional and quite friendly.  God bless my wife Jan.  She has been a real trooper through this and has been so supportive and loving! Regarding the procedure: They use a drilling technique which is quite unlike the bone marrow biopsy I used to do which were manual.  I will give them credit for giving me a great anesthesia experience!  They gave me 50 mg of fentanyl and 1 mg of Versed IV as they were getting ready.  I felt a slight pinch from the local anesthesia and I would swear that I was a...

I find myself sometimes at a loss to speak about myself.  I don't really like to talk about myself.  Usually, after meeting someone, I feel like I know them but find (afterwards) that I really didn't share as much about myself.   I do so well with patients and even talking to family about a family member's condition.   I fear I may have frightened my son Justin unnecessarily.  He wanted to know what was going on and I told him of my thoughts.  Sorry Justin!  I apologize to you and didn't think about how my analysis could be so devastating.  I believe I didn't convey (enough) my faith in my healing GOD and GOD's bigger plan for this whole process.  

At Doug Keim's (my primary care doc) urging I called the on-call doc for Shenandoah Oncology.  Nick Gemma, MD was on-call today! To a person, all the oncologists are great but I was so pleased that Nick was able to spend some moments with Jan and I at the end of the day today.   His demeanor was great, he seem unrushed as he discussed with Jan and I the two leading diagnoses after I brought my CBC, the CBC parameter curves over time, the blood smears and the normal B12 and folate done because of the megaloblastic anemia (along with the thrombocytopenia and the leukopenia - in other words - PANCYTOPENIA). The pancytopenia and the indolent nature of how this presented (feeling tired, not being able to swim well, etc) fit the symptoms. His two leading thoughts were either: Large granule lymphocytic leukemia or Myelodysplasia. Not very comforting possible diagnoses but at least an explanation for the pancytopenia.  Jan did well through this (she is a...