At first when you find out it’s 🔹SHOCKING and 🔹OVERWHELMING.
There is 🔹NO CURE as of today. It’s a 🔹CHRONIC slow progressive🔹CANCER.
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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