MPNforum Magazine

by MPNforum Readers

It could be the question you ask, half dressed, while the doctor looks over the lab results.
   It could be the question you ask yourself waking up in the middle of the nmight, sweating or retreating from a stabbing pain.
   And after the biopsies and lab reports, when all the data is laid out like a high-tech Tarot spread, can the future really be read?
   What are the odds? Are we talking months, years…weeks?
   And despite the a white-coated shrug and non-committal thin smile, we know it’s not today, not now at least.  When the sun is shining and we pull out of the medical center parking lot and head for the Interstate, we kmow we’re still safe, our mind focused on traffic and not eternity.
   It’s an illusion of course, an illusion we can live with. 

It’s a living…

Elizabeth Goldstein

The day I was diagnosed with ET I asked my hematologist if I could still  live to be 100 – she looked at me for a few seconds and said, “No, probably not that long, but you should have a reasonably normal lifespan if you stay in treatment.”  I was shocked, my father was 94 and healthy then and I had always assumed I’d live a very long life.  At home that evening, I searched the Internet and read everything I could find about ET and MPN’s.

Of course, the information ranged from completely terrifying to very encouraging and gradually, I accepted the fact that these diseases had very little research to read and seem to behave differently in almost everyone.  I realized that I had to face a future of lots of questions and very few answers: will I stay with ET or will it morph into one of the other, less treatable and sometimes fatal, diseases; will Hydrea cause more problems the longer I’m on it or will it just stop working and I’ll have to deal with another drug and possibly, worse side effects; how will I know if my disease is progressing; and so on.

Now, fifteen months after diagnosis, I’m still learning to deal with the symptoms of the disease and the side effects of Hydrea and a daily aspirin: fatigue, lack of appetite, chronic sinusitis, Raynaud’s syndrome, cramps in my fingers and toes, red, dry eyes, etc.  I have learned to take advantage of the good days – gardening is a passion and I try to get out and do it on those days or just get household chores done.  On the bad days, I try to relax (not one of my strengths) and remember that I’ll probably feel better tomorrow.  I have also learned from reading what others with this disease are going through that I am very, very lucky.

So, how long have I got?  I’m sixty-five now, and lucky, but who knows and if someone did know, would I want to hear the answer?  Learning to live with so much uncertainty isn’t easy but it is living…

It’s been five years and I’m still here...

Kathy Van Meter

Hang on; my crystal ball is warming up (only kidding).

I was dx’d in early January of 2007. My mom was on hospice and she and I talked a lot about dying. What would it be like? Would Dad come and get her? Would there be angels? Would it hurt? Would I be ok? She thought that living to 83 was quite an accomplishment. She was “The Grandmother”, queen of the family and the love of our lives. She died with all her make-up on, her best wig, gold hoop earrings and her favorite tee, “CSI: Las Vegas” complete with picture of the star, William Petersen, who looked just like my dad in his younger days.

My heme/onc had a med student with her the day I found out the results of the blood work. He sat with me while she finished up with another patient. I asked if he knew the results and he said yes, but that it would be better if the doc talked with me. Never one to avoid the inevitable, I asked him to just tell me. He then said that I was JAK2+ which meant that I had one of three MPD’s (no N’s yet) and would need a bone marrow biopsy to pin it down.

Oh, and he said that it was a blood cancer and did I want to call someone. Guess one shouldn’t hear the “C” word when alone. It wasn’t until after the results of the bmb which I scheduled for the next day (first available), that I asked the big question.

Dr. S, of course, would not prognosticate. And I, of course, had already devoured the internet which gave me hope for 5 years.  Well, it’s been 5 years and I’m still here. I actually wanted 10 so that I could get my youngest boys raised. I noticed at the time that I limited long-term planning to six months to a year.  I did that for about 3 years, not so much any more. I don’t think I really ever fixated on “how long”, more like “how good.”

After all, 60 is the new 40. I remember my mom in her early 70’s, telling  me that the only time she really felt her age was when she looked in the mirror and a “senior” looked back. She then promptly quit looking. Life provides so many opportunities for death; I can’t begin to guess which of them will actually take me.In the meantime, I shall do my best to stay present in the moment.

Whatever happens, I am ready!

by Joe Evans

Dr.  Alan Freedman diagnosed me with Polycythemia Vera in 1997. My first question to him was, “How long will I live?”  Dr. Freedman told me that I will have a normal lifespan once my blood counts get under control. I did not pay much attention to anything else he said.

My wife, Bonnie, asked all the questions and did all the research. I left the treatment decisions to them. The decision was made that I would take Intron-A injections given by Bonnie. Bonnie wanted to stay away from Hydroxyurea since she had read that there was a 10% chance of leukemia in 10-12 years.

Intron-A made me miserable with flu-like symptoms even with taking Tylenol. I stuck it out for six months when I got sick and tired of being sick and tired. I’d rather take Hydroxerea and have a better quality of life. I would take my chances that in ten years I could get leukemia.  My quality of life was excellent and my counts got under control. I got to a point where my plebebotomies were once every six months.  On a regular basis I would ask Dr. Freedman, “How much time do I have left?’ The answer was I would have a normal lifespan.

In 1999 I started to go to church with Bonnie on a regular basis which slowly developed my faith in God that whatever happens He would guide us. Going to church helped me cope with the disease especially with Bonnie by my side being my caregiver and advocate.

In 2008, we both retired and two months later, my disease
had progressed to Myelofibrosis. I was sicker and exhausted.  My quality of life started to go downhill again. I had read that I had only 3-5 years to live. Bonnie was affected more than I was since she studied the material available. Dr. Freedman had researched my options while we were in Southern Africa. He contacted Dr. Verstosvek at M D Anderson Cancer Center in Houston, Texas who recommended that I go into the Incyte (Ruxolitinib) trial. Dr Verstosvek told me that my quality of life would improve with Incyte but it would not cure the disease. I asked him that dreaded question again, “How long do I have to live?” He shrugged his shoulders and smiled. He had no idea.

 Incyte was successful for me. It enabled me to travel the world for three years with Bonnie. I was living and I was enjoying myself.

On October 12, 2010, my mortality hit me hard again. It hit  Bonnie even harder when I was diagnosed with Mantle Cell Lymphoma, a rare aggressive form of Non-Hodgkin’s. I was admitted to MDACC immediately since I was in great danger. It was possible that I would not be around much longer. I got great support from my family, friends and church. I knew I had to fight as hard as one could fight to save my life. My faith became stronger. My life was in God’s hands and He was directing the miracles that happen at M D Anderson Cancer Center.

There were so many inspirational moments. With Bonnie at my side, there was no way that I would not try to do everything I could to keep living. In June 2011 I was declared in remission from Mantle Cell Lymphoma. In July I was allowed back on the Incyte trial since I was through with chemotherapy.

By the grace of God I am now 69 years old. I am living my life to the fullest every extended minute with exotic travels around the world to places that were on my bucket list. I know the Mantle Cell Lymphoma will eventually come back but I will fight it until I cannot fight any more. Perhaps the Myelofibrosis will be my demise but it is not going to stop me enjoying life. The time will come when it will be all over. I am at peace with God and my life.

Whatever happens, I am ready! What a grand life I have had. I have loved and won so many times.

The Number Game 

 by Beatrice Larroque

How long am I going to live? That is the quintessential question!

That is the question that haunts all of us once diagnosed with Myelofibrosis, and since that fateful day, my life has become a number game:

How old will my boys be if I live … long? How old will I be if I live … long? What about if I live … long?

I must say, I am becoming quite good at mental math!!

Long before I ever knew about MPNs, I was going to live old, very old, well into my 90s, according to a friend who read my palms once.

But one night, my computer, very indecently, told me I only had 3 to 5 years to live.  That was terrifying, and definitely not acceptable! I was single and my kids were 7 and 10. I obsessively kept adding their ages to these ridiculous numbers, as if the result would somehow be different… but they were just as unacceptable, time after time again. So, at my next doctor’s appointment, I told him he had to keep me healthy and functioning for at least 12 years, long enough to put my younger son to college.

“I can’t do that!” he said, “there is nothing I can do, it will happen or it won’t!” “Nothing??” I asked, horrified, “No medication, no diet, no exercise, NOTHING???”

“No, nothing,” he replied

Well, that was definitely NOT acceptable!!

Shortly after this terrifying news an MPN specialist at Mayo Scottsdale, Dr. Camoriano, thought my life expectancy was closer to 6 to 8 years, but added that he had a patient that had been living with MF for 20 years.

That was more like it! 20 years it would be then!

Now, that was…7 years ago, so… 1 more year? No, sure I have more than 1 year left in me! And what about the lady that had 20 years with MF? And how many more years did she live since?

But then, I resumed counting again, you know, adding up numbers in my head, again. In 20 years, my boys would be out of college and starting their lives. I want to see them in love, I want to babysit their kids, I want to see them happy…

There is so much I still want to do, I WANT TO LIVE!!!

So, what will it be? 8 years? 20? More?

I know, I know, nobody can tell us how long we are going to live, statistics do not tell the whole story. “Statistics outline probabilities – they cannot limit possibilities,” said someone by the name of Stephen J. Gould who survived Mesothelioma for 20 years, an incurable cancer with a median mortality of only 8 months after discovery.

So, if this is a challenge, I’ll take it! I will play this number game, and I will prove everyone wrong!