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

Jan and I sat down on September 13th with Dr. Amy Dezern, head of the MDS (Myelodysplasia Syndrome) branch of Oncology at Johns Hopkins Medical Center. What Jan and I had suspected from the preliminary results of the flow cytometry and the bone marrow biopsy was confirmed by Dr. Dezern.  There is a small recurrence of my MDS cells in the bone marrow.  However, the news had some positive results as well.  Let me explain. The chimerism test (a test to show what amount of the the donor and host) showed that Erika's cells were 94% of the sample and my bone marrow contribution (the host) was 6%.  This means that the chimerism test from early June, which was 100% Erika cells had reduced down to 94%.  The cytogenetic studies revealed that 19 had a karyotype of female (Erika) and 3 had a male karyotype (me).  This means that Erika's cells continue to predominate. The other good news is that my white blood cell count has increased to 6100 with an absolute neut...

“ Faith  has to do with things that are not seen and hope with things that are not at hand.”  Thomas Aquinus The above statement on faith and hope are so true.  Faith and hope walk hand in hand with each other for those who have given their lives to Jesus Christ   If you add the love, you have from God and Jesus Christ, the promise that you will never be alone, you will always be loved and you will always have hope through your faith..   "And now these three remain: faith, hope and love.  But the greatest of these is love. "  1 Corinthians: 13:13 (NIV) So HOPE is what Jan and I are going with right now.  We will sit down tomorrow with the Head of the MDS branch at Johns Hopkins, Amy Dezern, MD to review the bone marrow biopsy results from a couple of weeks ago.  There are some questionable results that need clarification and hopefully, no return of the MDS cells.  We'll also see Viki our "primary" outpatient oncologic NP ...

I have a friend whom I have known for nearly 50 years.  He lost his battle with cancer yesterday.  I so desperately wanted to visit him today but he went on a day ahead. I waited too long to share my brotherly love for him and the love of Jesus Christ... Act on the that 'little' voice inside.  Think globally and act locally!  Let me tell you something.  Do you know what the most powerful word in our language is?  It is the person's first name used in a positive way.  " John, thanks for helping me today, I hope you have a great week!" " Kristy, I want to say, I noticed you were very nice to that person (when they weren't).  Keep up the caring work." How hard is that to do?  If you saw the Shoulder Taps video from the prior blog, you get that. If you are in a retail store and you see their name tag... it's there for a reason.  I tried hard to remember and use the names of the techs and nurses who cared for me at Hopkins. If you ...

I realized that I was much more in tune with God when I was suffering mightily, worried for my wife who was at my side and worried about my family and the practice. Many times, I countinually prayed while I was able to. As I recovered and was more ambulatory and came home, the 'static' of this world started coming back. With the worldly distractions we all experience, I felt like I got out of TOUCH with that 'quiet voice' of the Holy Spirit and God who miraculously brought me to this point today.  Before I go further, I want you to watch this video by Bill Hart and his experience with (what he calls) "Shoulder Taps". Click on the image above to watch the short video. I want to thank all of you, who have listened to that quiet voice (shoulder tap) from God.  In doing so, I have been blessed by your words of encouragement, your cards, your meals, your events and financial support.  We were made to be with others and connected to them.  An obvious demo...

Wow! Has it been that long...One month since the last blog post.  In my defense, though, I've been busy! The last 3 weeks I have been in the office on a very limited basis.  To those that were rescheduled due to some medical problems I had, I apologize. Two weekends ago, I started with some chest pain which got worse AND mimicked the same pain that I had when I had pericarditis back in March.  After a stay at the local hospital, I was subsequently transferred by ambulance to Johns Hopkins.  The good news is that once I got on some prednisone (can't use ibuprofen or colchicine due to post-transplant), the need to use morphine for the pain subsided.  Their best guess is that I had a recurrence of the pericarditis which was caught early (the echocardiogram didn't show any pericardial effusion [fluid]).  Back home on that Monday 2 weeks ago. (2 day stay at the hospital) Another challenge is the pseudomonas bronchitis.  A culture was done and showed t...

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...