My blood & I are friends now since adapting to our fate;

30 years since we both found out when I opened up that unknown gate.

 

After numerous lab tests, & 2 biopsies my life would turn a corner leading to unexpected findings in my health & well-being; I would soon realize that the reflection in the mirror was no longer showing the face I was accustomed to seeing.

 

My best friend showed concern for me as she said I wasn’t the same;

my eyes had lost their sparkle & my energy seemed to be drained.

 

I went to a nearby doctor who said I was just a tired young mother who needed to rest ;

I showed a little anemia, but all else was normal in my quickly read blood test.

 

Later that year I found a new doctor who seemed surprised by my platelet count;

he explained to me they were over one million, I didn’t know what he was talking about?

 

I had never heard of platelets only of red & white cells;

I thought well it’s all hidden in my blood, who could even tell.

 

He explained the best he could to me as I sat there with a wide-eyed stare;

he said to have a count that high was considered very rare.

 

So off I went to my first oncologist as I opened that scary gate to the unknown;

more blood work & then a biopsy where they take marrow from your bone.

 

I found it very painful, it seemed to take forever, as he tried his best to chip off some bone;

my husband held my hand & stood next to me so I wouldn’t be scared & alone.

 

Even though the doctor couldn’t get the amount that was required;

he was able to confirm my disease & why I was so tired.

 

He had expected to see Leukemia because of my younger age,

never suspecting Essential Thrombocythemia because it was seen as a senior disease according to their medical gauge.

 

I remember feeling relieved that his suspicions were incorrect, now I didn’t need to worry;

Yet I had no idea the road in front of me was about to become rocky & curvy.

 

I looked for information everywhere I could, my husband took me to a major hospital hoping to hear that I would be fine;

instead, the young doctor made us feel worse, he said I had a disease that could change to Polycythemia Vera or Acute Leukemia at any given time.

 

My doctor prescribed Hydroxyurea, as he explained to me with my mouth wide open;

that taking it more than 5 years could cause me to have Leukemia, this was not what I was hoping.

 

He said it would lower my platelets & that’s all they had to offer me, there were no other meds for me to choose;

I asked him if he would consider taking it if he were in my shoes;

 

Of course, he couldn’t answer me, so I was left to make the decision on my own;

I chose to say no as I searched for more answers in other places more unknown.

 

I tried months of acupuncture, & Chinese herbs, for two years I did the best I could, to find myself a cure;

It was important to my body & soul that I try everything that could possibly heal me, I had to be sure!

 

I felt my body work against me, the disease was way too strong, my platelets took off soaring, the count reached two million I knew I had no choice;

I had to take Hydroxyurea which is an oral form of chemo, after two years of fighting I felt so defeated as if I had lost my voice.

 

After many days of praying & crying I felt some peace within me & found a happy medium by blending the east & the west;

I could take my medication & while informing my doctors I found other holistic avenues I could test.

 

I found a Qi Gong master who helped me with my energy, which made me feel more whole.

I became my own personal warrior fighting back retrieving what E.T. stole.

 

Almost three decades later, I no longer fight this disease, I have decided to become friends with E.T. even though it took me quite a while;

I feel blessed that the hospital doctor was incorrect & I appreciate the days when I have energy which I embrace with a smile!

 

The journey has been very long, with struggles & rewards & many teachings along the way;

After 20 yrs of taking the meds 7 years ago, I chose to say no more, still coping with this disease with its own side effects day by day.

 

Now I am only taking aspirin & my platelets have begun to behave, they have actually slowly declined, a miracle some say;

Although I have a normal count now no longer seeing the H for high, I’ve been told not to get too excited so I still continue to pray.

 

Even though they say there is no remission & that MPN diseases will never go away,

I still pray & hope that a cure will come along one day!!!

 

Yes living with a bone marrow disease can knock you off your feet, so I choose to get back up now instead of feeling the defeat!!

 

I am a prime example that you do live on with chronic cancers & yes we are all unique with a different DNA;

but with faith & your desire to search you can find your own way!!!

 

You can step into each day knowing you are a survivor not only of living with this disease but of living it with a smile and staying strong day by day!!!!!