By Ron K.
Fortunately, my MPN journey has been a long one. I was first diagnosed 32 years ago and I know have post-Polycythemia Vera Myelofibrosis. Looking back it was almost archaic in nature. Today the progress has been immense on many fronts, not just in treatment, but with treating the patient as a whole. As many of you know, there is no exact recipe book for life with cancer and its treatment journey is unique. My hope is that sharing some of my experiences may help someone else along the way.
There is a quote by Albert Einstein that reflects my approach to my medical journey
Learn from yesterday, Live for today, Hope for tomorrow. The important part is to not stop questioning.
Learn, Live, Hope – three good words for any cancer patient.
As those with an MPN know this is a chronic neoplasm and unfortunately there is no treatment yet to cure this illness. Some of the latest MPN and MF drugs do improve one’s quality of life and even appear to extend one’s survival, a significant milestone from what was available just a handful of years ago. Finding ways to slow or stop the progression is my only hope until medical knowledge can surpass me with a real solution.
Having a chronic cancer and having it for a long time has enabled and encouraged me to evolve into a healthier lifestyle. One does not have to change everything overnight but just evolve and continue to build healthier ways, one step at a time. While there is no evidence that a healthy lifestyle will cure me, it is something I can do and have control over.
This all started back in 1985 when I went to my family doctor with a cold and I mentioned that my colds seem to last longer and hit me harder than others. A simple blood test began my journey. I would not be alive today if I followed my first hematologist’s treatment plan. He wanted to treat me in a traditional manner at that time, with a radio isotope that kills off some of the marrow, they know now that treatment leads to an acute leukemia years down the road. Instead my intuition questioned this approach, since I was only 31 and I thought that I might need that marrow later in life. I called a major metro medical center and asked for an appointment with their Chief of Hematology. Unknown to me at the time, and not commonly termed in the 1980’s, I was going to get something called a second opinion. I got an appointment and his approach was quite different. He wanted to understand me, my rate of progression, severity, etc as that would lead him to figure out how to best treat me. He even commented that the current radio isotope treatment (my first hematologist’s plan) to kill off marrow was likely going away as he saw it.
Today, I am a patient of Dr. Mesa’s. I found that they could answer all my questions. Answers to questions that my previous hematologists could not answer. They have knowledge that is very leading edge as to direction of MPN treatments as they are part of an elite group of hematologists that are making many of the MPN discoveries, designing the clinical trials and studies with other key hematologists around the world. So my personal doctor advice is to make sure you find the right doctor and treatment strategy for you. Listen to your intuition and ask questions, seek information and acquire knowledge in your cancer and health. Expect answers or find those professionals that can give them to you. While I did not need a MPN specific doctor early on I do need one now as I am living well beyond the averages.
For me, finding the right doctor has been a key in my cancer treatment journey. Getting a second opinion is also key. What you will likely find is the different doctors will agree on the diagnosis but their treatment strategy will often be different.
I attend conferences, seminars, and special programs such as those that the MPN Advocacy and Education International puts on. I have done online webinars or conferences as well as belong to online MPN listing groups to learn and share information. I find this information to be helpful to ask the right questions to my doctors and understand what may be option in the future.
I believe support makes a difference. It is helpful to have support from your spouse, kids, parents or friends. I also find that support groups can be very helpful as well. As they can fill a support void that is missing from one’s non-cancer family and friends. This is no fault of family, spouses, or friends in that they do listen and they do try to understand and relate and they do support the cancer patient, but I have found that belonging to a cancer support group often helps to fulfill things non-cancer patients cannot quite grasp. I have belonged to both hematology specific support groups and all cancers support groups. You might want to try both and see if one works better than another.
As I live my life, I am grateful for every day. Everyday is a great day, just some are even better than others. I even celebrated the point in my life where I have lived longer with cancer as part of my life than without cancer. That was at about 31 1/2 years and I had a bakery make me a cake to celebrate the occasion. The cake was symbolic of my MPN journey and view of life. I celebrated this occasion with my all cancer support group. So while cancer is a part of my life I run my life with cancer being a part of it and I do not let my cancer rule over me. I am hopeful that a cure is in our much sunnier MPN journey. May the best be yet to come, and enjoy the day!
Ron,
Thank you for your inspirational note.
It sounds like we have a lot in common. I too run my life with cancer being a part of it, not letting the cancer run my life. I too have lived longer with cancer then without. I too have lived 30+ yrs with an MPN, diagnosed Jan 1986 at the of 19 with PV, then progressing to MF around 2009.
Yes, there are definitely better days than others, but I have been able to enjoy my graduating from college, marriage for 27 years, the birth of my 2 children, staying home and raising my children, watching them walk for both High School and College graduations, me going back to school to learn a new career and then working in that new career part time. And now I am looking forward to this next chapter in my life to see how it plays out.
In the beginning, I had been fortunate to find a hematologist, who was my second opinion, who followed me from the start for about 15 years. I truely believe since he was a research Dr at a major university in the area he was on top of any new developements that was in the pipeline at that time. It’s true, my age at the time drove my treatment. I was swayed away from certain medications until my body didn’t give me a choice. Things in the MPN world began to change after the JAK2 gene was discovered and that’s when I switched to a specialist, another research Dr at another University. In all, I’ve been on 7 different treatment plans and a part of 2 trials. I don’t let it take over my life, but I do try to keep informed through support groups (both in person & on line) as well as doing my own research occasionally.
While I don’t have a motto, I try to “keep my blood moving”. I too am grateful for every day. It’s both a blessing and a curse to live with a chronic cancer. While it’s sometimes hard to do not knowing what the future holds, I am able to enjoy every day for what it is, another day with family, friends and life.
Take care,
Nancy D
Thanks for sharing your story, Ron. I’m glad you have made good choices and have had such a long run to this point. I have PMF and I think your philosophy is spot on. Today is wonderful and I hope tomorrow will be even better!
Nice to hear that…!!! Good luck ..
What a wonderful outlook Ron. I feel much like you do. I have lived with cancer for 2/3s of my life. I am triple negative with ASXL1 & EZH2…very dismal outlook on paper yet I am here and doing pretty well after 28 years of ET and 12 years of MF. Attitude is important as is exercise. My husband gave me a Fitbit with heart rate which helps me push myself to try to take 10,000 steps a day, 6 days a week. Last year I was lucky to hit 2500 steps a day. I hope everyone will read your story and follow your lead and try to make healthy changes to their thoughts and physical bodies. There is so much more research and therefore HOPE nuw.
Diane,
Thanks for the comment and I am glad to hear you are doing so well with your 40 years on the journey! Attitude and exercise is an important part of our blood cancer toolbox! I imagine that our outlook, attitude, and seeking out the right treatments have led us to outlive the statistics.
Cheers,
Ron
Thank you for sharing Ron. You are indeed an inspiration to me. 🌞
Thank you all, Dave, Amira, Gabriele, for your positive comments and so glad to know that others also feel how fortunate we are for every day.
Ron has been a member of our Cancer Support Group for many years. His input and energy and positivism give such a noble interpretation of my philosophy about cancer: Cancer does not enrich your life; but your response to cancer can. Thank you for this, Ron. It was incredibly inspiring!