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

This past week has been one of continued rehabilitation and... Establishing good "hand-offs", that is coordination of care between Shenandoah Oncology (Dr Gemma) and Johns Hopkins (Dr Luznick/Viki Anders CRNP). Due to the Valganciclovir side effects of affecting the bone marrow.  I received a unit of platelets (level 14K) and I sit today after my appointment with Viki at Johns Hopkins getting a unit of red blood cells (Hemoglobin 6.8 - a measure of the red cells - low normal is usual 13-14 ).  As a result of the anti-viral for cytomegalovirus, I will, more than likely be dependent on platelet and red blood cell transfusion in the coming weeks.  The prayer here is that the Valganciclor works but doesn't severely affect my bone marrow. Dr Mikus gets thanks for stopping the nose bleeding which as been going on for a week (due in large part to the low platelets which help "clot" formation.  He cauterized (in this case, he used a chemical known as silver nitrate ...

I was speaking to Dr Gemma yesterday.  He warned me that sometimes the post-transplant period I am currently in is sometimes as challenging as the acute phase of post-transplant.  He was right. On discharge this past Tuesday, Jan and I were excited to go home.  Oops!  First bump... Cytomegalovirus!  This virus in almost all who get this viral infection, usually in childhood, will  cause a mononucleosis like illness or minimal symptoms, if any.  It then goes dormant (like chicken pox) and resides in the body in a kind of suspended state.  It can reactivate (wake up if you will).  This happens in a lot of different transplant patients.  It can be a dangerous, causing encephalitis (brain infection) and affect other organs including causing the transplant to fail.  There is an oral medication, valgancicyclor, which can help.  But this drug can be quite toxic including causing the transplant to fail as well. Platelet counts rema...

The bone marrow went well today to check to see if there is any residual cancer.  Plus, had to have platelet and red cell transfusion along with the biopsy. The GREAT NEWS is that if everything goes well over the next 24 hours, I will be discharged from the IPOP transplant unit tomorrow!   Effectively discharged from the intensive program, AND, we will pack up and COME HOME! They'll be lots of trips back and forth in follow-up but being back home...beyond words! For those of you who've sent some very nice cards to the Baltimore address, you may use our home address if you want to:  127 Cabbage White Drive, Lake Frederick, VA  22630 I should be back in the office (initially limited hours) in the next few weeks and I look forward to seeing all of you! It is nothing short of miraculous that this process has moved along so well recently.  I have you all to thank for your prayers, help and concerns for this .   But, to GOD I give the glory.

Things are progressing as we move closer towards discharge from the stem cell in-patient/out-patient program. I am now at the weight I was before the ACC conference swim finals back in 1975.  Lot less beef in this case.  I DO NOT RECOMMEND my diet plan!😉 Today, the usual routine.  Get up early, prepare and go to IPOP at the KIMMEL CANCER CENTER.  As Jan came to the car, the driver side window was smashed in (during the night apparently).  REALLY!  Jan had to stay for the police and insurance and clean up with my mandatory appointment in 30 minutes! This was a real personal challenge... I still am reconditioning and walking is difficult.  Thank goodness for Uber as I went on my own to IPOP.  I made it (slowly but got there) and took Uber back after my appointment to our apartment (Jan still tied up with break-in).  As the saying goes, "Necessity is the mother of invention!" Seems like as Jan and I have come to say, "It is what it is!"...

It is good to be out of hospital after being in 47 days!  Out of the hospital now 7 days and good to be back with my wife and not having to 'survive' each day in the hospital.  Now, each day I go to IPOP  (the unit called "Inpatient/outpatient").  Lab drawn and any needs addressed from tranfusions to getting IV electrolytes, etc.  Progressing each day.  I am very deconditioned.  I am regaining strength slowly each day.  Currently getting over Graft vs Host disease.  A frequent complication where the donor cell are still 'attacking me'.  It is fine line since there should some GvH disease which helps the donor's cells 'get rid' of my cancerous cells.  Taking high dose steroids but that's the price to pay to get over the GvH disease. Engraftment has occurred!  Effectively, this means that Erika's stem cells have established.  So...Erika's stem cells are currently producing the white blood cells.  The other cell line...

Sorry about the GAP in updates (I am using some of Jan's FB posts as information since many days I was either too out of it or just too sick) - My last post was t-zero. Jan is typing for me. The transplant occurred while I was still being treated for streptococcal pneumonia. Erika produced more than plenty of stem cells for transplant. Here is the following list of evens that occurred: 103-104 fevers 2 days of high dose cytoxan (chemo), which wiped out fever cytokine syndrone occurred which led to fluid overload that caused atrial vibrilation with rapid ventricular rate,  acute kidney failure , which caused emergency dialysis. head to toe bright red rash clearing of rash with peeling  engraftment began with yet more bouts of fevers, rash, and edema had inflamation inside and outside. abdomen swelled so badly , couldn't breathe. began coughing up blood.  had to be intubated and put on a ventilator for 3 days many tests and procedures lungs were ok but had sma...

I am sorry that I have not posted in the 3-4 days (haven't had my usual computer resouces).  During this time, I've been in the hopital.  On Satuday, a dry cough was worse and I had a fever 102.7.  Turns out I had rhinovirus (a little more malicious in someone with no immune system) which led to a L lobe pneumococcal pneumonia.  Triple antibiotic therapy. O2 support.  Slowly better. As soon as yesterday, they were just about ready to cancel Erika's peripheral stem cell harvest because they thought I was too sick!  Then at the last moment, they recounted.   I would have felt VERY bad for Erika who had been self-injecting Neupogen for the 5 days prior (with all the side effects). Yesterday, as I mentioned, we moved forward although I am still sick and received the Total Body Irradiation.  7 minutes on one side and I was flipped to get the 7 minutes.  Strange, face felt like a sun-overexposure and last that night my mouth had membranes (much...

Thanks again to all who've helped through the GoFundMe site (and off line) - we are two-thirds of the way there!  Thanks for sharing my blog. Yesterday was my first day of chemotherapy.  It was rough... but not how you might believe it was.  The chemotherapy with Cytoxan and fluarabine, although taking about 5 hours was pretreated with Zofran IV.  No nausea or major side effects. This kind of therapy is 'myelo-conditioning' therapy.  [Myelo - meaning bone marrow].  With some chemotherapies, the treatment is myeloablative (that is they TOTALLY wipe out the bone marrow).  With 'myelo-conditioning' therapy, they don't totally wipe out the bone marrow but come close.  Of course, the total body irradiation I receive at T -1 (day before transplant) will further drop the white blood cell counts (along with the red cells and platelets). The challenge I have are the various injuries I have had in my lifetime (ejected from car, run off the road by te...

I was recently contacted by the AAFP News (from the American Academy of Family Practice) about my story and how other physicians stepped 'up to the plate' to help me out during the time I will be away from Skyline Family Practice. See my other post on those doctors who have started helping or will soon help us. Here is the link to the guest editorial: https://www.aafp.org/news/opinion/20180326guested-cancer.html I hope you enjoy reading it.  On another note, the financial help many have given on the GoFundMe page continues to help and is so appreciated.  The community and my church have continued to pour out blessings for Jan and I.  A community spaghetti dinner was done to help us last weekend. Provided by the Adult Sunday School classes at Riverton United Methodist Church and attended by many in the community, the event netted over $3700.  God is good!

I've been stuck at home recovering from this pericarditis as I wait to start the reassessments and testing to see if I can proceed with the rescheduled chemotherapy, radiation and stem cell transplant which will start again (prayerfully hoped for) on April 4th. A movie opened on 3/16 (which I was able to attend behind a surgical mask) - "I Can Only Imagine" whose title is based on the break-out best selling song by MercyMe.  What a great movie; no matter where you are in your personal faith journey!  The movie is about Bart Millard (lead singer for MercyMe) and his tough life as a child and his abusive father (played well by Dennis Quaid) - you'll have to watch the movie to see what happens!  The song itself, if you have never heard it, is great (the song linked to the image above.)  This song is inspiring, humbling and so hopeful. Yesterday, the Adult Sunday School class (Larry Moore's class) hosted a Spaghetti Luncheon Dinner at Riverton United Metho...