the Seventh Anniversary of my Bone Marrow Transplant

What follows is a summary, at least in part, tracing the reasons why I stopped writing blog posts (with one exception) for over four years. During that time, I had many complications to my Bone Marrow Transplant. I only have time to recount a few of the reasons here.

 

In early September 2008, I developed Shingles, Disseminated Varicella Zoster, and Zoster Pneumonia in rapid succession. All three are caused by a reactivation of the Chicken Pox virus, after you've alreay had Chicken Pox, usually as a child. Shingles is very painful, as anyone who has had it can testify. Disseminated Varicella is a dangerous form of adult Chicken Pox which develops mostly in transplant patients. Some bone marrow transplant recipients never get their immunities back, which explains why they can get Disseminated Varicella Zoster -- Chicken Pox as an adult. Zoster Pneumonia is a pneumonia caused by the Varicella Zoster which has set up shop in your lungs and can easily become life-threating.

 

In my case, it took the Zoster Virus three months or more to release me from its grip. What followed was a series of other complications which I'll write about in more detail soon.

What prompted me to write a post after all this time? January 27, 2013 was the seventh anniversary of my Bone Marrow Transplant.

I'm somewhat surprised that I've lived this long. Out of the many who had a bone marrow transplant during the same time I did, I'm one of the few who has survived.

Why am I one of only two who survived? In a strange way, I feel guilty.

 

I do feel good about being alive, though. I also feel grateful -- grateful to God, grateful to my doctors and nurses, and grateful to my wife Krissy who has stood beside me no matter what my medical treatment put us through.

And I'm thankful for each one of my readers, also, who has continued to help me through this.

 

Despite the guilt and a nagging sense of loss, I'm hoping for another seven years of life.

Hopefully there will be fewer complications in the coming years. The last four years have left me with much to write about. And there are the current life events which I cannot neglect in my future posts.

 

I'm back, friends!

John

Merry Christmas 2010

I know it's now December 26, but I'd still like to send you a Christmas greeting. The gift of Jesus' birth in Bethlehem was precious to me at an early age, but I was also a typical boy in many ways. I grew up loving the Peanuts Chistmas television Special, and I have watched it as many years as I could since it first aired in the mid-1960s. The story of Charlie Brown's search for the true meaning of Christmas in a modern secular holiday season had profound meaning for me back then, and still does now. I love this cartoon, as well as the outstanding music that accompanies the program.

Here I want to share with you my favorite track from my Peanuts Christmas tradition. It's called "Linus and Lucy," and whether you are familiar with it or not, I hope you'll enjoy this jazz number as much as I do.



Have a Merry Christmas and a Happy New Year.

Coming home from the hospital

It has been two months since I have written an entry.  There are a few reasons for this.  I've been sick for the last month.  I have been hospitalized in Hershey Medical Center for the last three weeks.  I'm doing better now.  I am going home tomorrow.  I'm really excited about it.  I will write another entry in a day or two upon returning home.  I hope you continue to read my blog when I begin writing more regularly.  Take care.

I Was a Guest Editor's Pick

I want to thank Jude of My Way  for choosing me as a Guest Editor's Pick in Magic Smoke on August 8.  It was an honor to be chosen among those she selected.  If you haven't checked out her blog, please visit; it's an interesting read. 

Tags: Guest Editor's Pick, AOL Journals, journals, blogs

Happy 5th, JLand

I wanted to write an entry tonight because this is the 5th Anniversary of AOL Blogs. I couldn't let this day go by without saying what JLand means to me.   

 

I have been writing a JLand blog for less than a year now, about which I have received many thoughtful and concerned comments.  I knew two years earlier, however, that JLand was a caring community where people would take the time and go to the effort to support and encourage others who they had never actually met.  Even before I had gotten my bone marrow transplant, I was receiving a great deal of traditional mail from JLanders literally around the world wishing me well and offering thoughts and prayers that my transplant would go well.  My wife, Krissy, often told me about the outpouring of concern for both of us in the comment section of her blog, and would read aloud comments left there for me by JLanders. 

 

After my transplant, while I was an inpatient at Hershey Medical Center, Krissy would bring to my patient room each morning a stack of cards and letters from JLanders inquiring about my health and wishing both of us well.  At Hope Lodge, where Krissy lived while I was hospitalized, the staff would keep our abundance of mail at the lodge office and would jokingly ask her if we had a fan club.  The warmth and affection generously offered by JLanders played a large part in keeping my spirits lifted during the long year I spent in the hospital.  All of you have my most sincere gratitude.

 

I learned that JLanders represented the best that humanity had to offer.  Your interest in others continues today, not just for my wife and me, but also for other JLanders and people in general. 

 

Happy 5th Anniversary, JLand!  Your mutual interest and support for each other makes JLand a uniquely welcoming place.

 

John

Tags: AOL blogs, JLand, anniversary, bone marrow transplant, hospital, blogplugs

My cancer is not back

 

I haven't been able to write an entry for awhile, but I wanted you to know that my oncology appointment on July 28th went well. 

 

My cancer is not back.  When my oncologist returned from vacation he told me that the doctors who thought my cancer was back didn't have his experience in treating MDS.  That's why they were mistaken. 

 

He's quite pleased with my progress both with the transplant and with my kidneys.  The reason my kidneys were not functioning as well as they had been was because of a medication I was taking.  My oncologist is taking me off this medication gradually, and my kidneys have already begun to improve.  I will be off this medication in about a week.  

 

The only thing my oncologist is concerned about is my iron level.  I have iron overload from the more than 100 blood transfusions I've had since my bone marrow transplant.  My iron level is more than 7 times the normal level what it should be.  In the near future, my oncologist is hoping to put me on a medication which will lower my iron level back to normal. 

 

I want to thank every one for their concern, comments and prayers.  Your support really means a lot to me.  You made it easier to get through this.  I'll do my best to keep you up to date on my future progress.    

Tags: remission, cancer, MDS, bone marrow transplant, stem cell transplant, kidney damage, high ferritin level, blood transfusions, blogplugs

Bad News in My Blood Test Results

For several months recently my blood test results were quite good.  They showed that I was doing well in many ways, and especially that my immune system was stronger than it had been since before my bone marrow transplant.  My oncologist at Hershey Medical Center was so pleased that he reduced my blood test schedule from once a week to once a month.

 

Then, about three weeks ago, my lab results showed that my neutrophil count had fallen well below the normal range, which meant my immunities were low, and were actually on the edge of being dangerously low.  I waited a week, all the while wondering if my immunities were getting weaker or stronger.  But after a week, I felt that couldn't wait the remainder of a month to see how I was doing.  Hershey's Post Bone Marrow Transplant Coordinator, the person I call when I have a problem, was away on vacation.  Since I couldn't reach her, I turned to my local oncologist's office for help.  One of the nurses there said that I could have labs done twice a month for a while, since my neutrophil count was low. 

 

I had to wait another week, but I had the labs done.  The results showed that my neutrophil count was very low, much lower than it had been two weeks before.  This means that I will have to stay in our apartment almost all the time, and when I go out I'll have to wear a surgical mask everywhere.  I'll also have to wash my hands frequently and use hand sanitizer often.  I can't have fresh fruit or vegetables, I can have no fast food, and I must avoid crowds of people. 

 

My wife Krissy called Hershey to see if I could have a Neulasta shot to raise my neutrophil count.  We learned that not only was the Post Bone Marrow Transplant Coordinator still on vacation, but my oncologist was also on vacation and wouldn't be back for two weeks. 

 

The doctor and nurse who are filling in for them don't know me.  They said that since my neutrophil count is so low two and a half years after my transplant, it could mean that I'm having a relapse of cancer.  If that's true, a Neulasta shot could further damage my bone marrow.  They said I'll have to wait until my oncologist returns and determines what's wrong with me.  I have an appointment to see my oncologist on July 28.

 

I'm not too worried about the possibility of a relapse.  The substitute doctor and nurse may not fully appreciate how much of the last two and a half years I've spent with a dangerously low neutrophil count.  Even though I'm not a doctor, I'm reasonably sure that the cancer isn't back.  My oncologist has told me many times that neutropenia (a dangerously low neutrophil count) can be caused by something as simple as a mild viral infection which you may not even be aware that you have except for feeling tired.  I have been tired lately. 

 

I have a feeling that when I see my oncologist on July 28, he'll tell me that my cancer hasn't come back.  I think he'll say that the substitute doctor doesn't have his personal experience with my condition.  If I'm still neutropenic at that time, I may get that Neulasta shot.

 

Even though I'm not worried about cancer, I have to be cautious about being neutropenic.  I can't afford to get sick.  With such low immunities, any infection could be very dangerous.  The last time I was neutropenic, I got a blood infection that sent my temperature up to 104.4 degrees and kept me in the hospital for a week.  This time I haven't felt sick -- just tired.  I hope it stays that way until my neutrophil count returns to normal. 

Tags: Neutropenia, neutropenic,bone marrow transplant, stem cell transplant, oncologist, neutrophil count, Neulasta, blogplugs