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My new normal: Life after myelodysplastic syndrome

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holly easley new normal.JPGBy Holly Easley

My friend, Julie, a cord blood transplant survivor, wrote me a sweet note a few weeks ago. She mentioned that she was trying to find her "new normal."
 
As a stem cell transplant survivor, I've recently been thinking a lot about it myself, and struggling.

I catch myself saying, "Whenever I'm off my immune suppressant drug, sirolimus, I can do such and such," And then, "What if that never happens?"  

I had to take off my rose-colored glasses and realize that "normal" will never be the same as it was before cancer.

This doesn't mean it's bad. It just means my life is different.

I think it's impossible to go through cancer without being changed.  

In early December, I got sick with a sore throat. It was the first time I'd been sick since my transplant at MD Anderson a year-and-a-half ago. 

I now understand  why we must go through all the things we do to prevent getting sick after a transplant.

Without much of an immune system, I became very ill quickly and had to be hospitalized.
It took a month for me to get well, which made me realize the importance of compliance with my doctor's orders.

As time goes on, carelessness can creep in. 

I now realize the importance of all the things my survivorship nurse at MD Anderson taught me. 

I'm really good at hand washing and sanitizing, and staying away from people who are sick. But I also realized I must live like a healthy, normal person instead of staying cooped up at home afraid of getting sick. 

Coming to terms with my new normal
A few months ago, I tried to get off of sirolimus, with permission from my doctor Chitra Hosing, M.D.

It didn't work. 

It only took a week for me to have symptoms of Graft vs. Host Disease
(GVHD)
, and much, much longer than that to get back to where I was. 

Actually, I still don't feel like I'm doing as well as I was before trying to get off of sirolimus.  
This brings me back to my new normal.

I can honestly say that the things I occasionally gripe about -- taking a lot of medicine, chemo fried hair, tiredness, frequent blood tests, feeling isolated and lots of other "stuff" -- are really not all that bad. 

In fact, I'm proud of where I've been and where I am now in this journey. 

It's just a matter of acceptance and compliance. And, remembering all of the many wonderful blessings and friendships that have been given me.

The positive things far outweigh the negative.

So, here's my advice. Find your new normal, follow the instructions of your health care team, live life to the fullest and accept the beauty and wonderfulness of being given a second chance.

Holly Easley began her cancer journey five years ago when she was diagnosed with myelodysplastic syndrome (MDS). After two types of chemotherapy and a stem cell transplant, she loves life, is improving daily and enjoys blogging about her cancer experience.

Read more posts by Holly Easley

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