At first when you find out it’s SHOCKING and OVERWHELMING.
There is NO CURE as of today. It’s a CHRONIC slow progressiveCANCER.
Only true curative procedure right now is a risky STEM CELL TRANSPLANT. Usually only available to patients as a last resort and only if you can find a 100% match. It is not a pleasant procedure and carries many risks. Other forms of treatment are low dose CHEMO for life, which can cause other issues.

There are many types of MPN’s:

ESSENTIAL THROMBOCYTHEMIA ET
POLYCYTHEMIA VERA PV
MYLEOFIBROSIS MF

They all present differently and each person can have different MUTATIONS that change the prospective of diagnosis and prognosis. Some people are more prone to HEART ATTACK STROKE or BLOOD CLOTS. Others are more prone to BLEEDING.

You see MPN’s are RARE and UNIQUE. There isn’t a lot known about them but continual research is slowly improving in this area.

I equate an MPN to being like a wild fire . Right now it’s contained and slowly burning. But there are so many factors that could or could not happen. The weather could be uncooperative and fuel it , the wind could pick up and it could shift direction, it could jump the barrier and go out of control or it could just sit there and simmer for a long time.

The UNKNOWN creates ANXIETY and UNCERTAINTY. Will it PROGRESS? What does that even look like? TIME? How long do I have? COMPLICATIONS? How does it affect my overall health?

Not many medical professionals know much about MPN’s, let alone people in general. Because most of us look “fine”, our conditions are usually IGNORED and DISMISSED.

We all have our UNIQUE journey with MPN’s. Some are LONG LIVED some are SHORT LIVED. Some PROGRESS and some don’t! Many experience a lot of SYMPTOMS and some don’t. There is no rhyme or reason and is different from person to person.

Personally my two major symptoms, and how I was diagnosed was CHRONIC FATIGUE and SHORTNESS OF BREATH. Is it the end of the world to live with that? No, but it does affect my daily tasks, my CONCENTRATION MEMORY SOCIAL LIFE RECOVERY TIME and overall MOOD.

As another fellow MPN’er put it…brain signals to to BONE MARROW to produce BLOOD CELLS which when there is enough the brain will signal to stop but with an MPN our signal is BROKEN and just keeps producing blood cells. This puts our body into a CHRONIC state of STRESS and affects our major organs. Equating it to our HEART and LUNGS can never get off the treadmill.

Don’t get me wrong, this isn’t a pity party. I am GRATEFUL that I’m not currently fighting for my life compared to other cancers. This isn’t a comparison. But what needs to happen is more AWARENESS and UNDERSTANDING. No one should assume or judge a book by its cover. Many illnesses are INVISIBLE and no ones STRUGGLE or own demons should ever be INVALIDATED or DISMISSED.

I have experienced many losses the last few years. This whole journey has shown me how naive I was to appreciating my health while I had it. And now has made me view my approach moving forward. I am a FIGHTER and will continue to move through this phase of my LIFE with as much GRACE as I can.

Count your BLESSINGS, always keep an open MIND and UNDERSTANDING of both yourself and others. CHANGE can change us, but can also be TEMPORARY and comes with many LESSONS.

MUCH LOVE TO YOU ALL

Written by Jolaine Loski West

Just diagnosed or looking for support in general: Check out these two links from www.bloodcancer.com!

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