CML Warriors Unite: Building Your Leukemia Support Network

When I was diagnosed with Chronic Myelogenous Leukemia on February 9, 2011, my first thought was, "Am I going to die?"

My next thoughts were, "How much time do I have?" What do I do now? How do I fight this?" and "How much more time will it give me?"

It didn't take me long to figure out that this battle was a journey, not a sprint. There was no cure, but there were several treatment options. If one failed, I could try another, and I hoped there would be more to come; someday, maybe even a cure.

I was diagnosed with a 395,000 white blood count; the normal is 4,000-10,000; I was a one-sick pup. I was hospitalized, and treated with leukapheresis, and chemotherapy. I had a bone marrow biopsy to confirm my diagnosis, and when my white count was below 100,000, I was allowed to go home, with a prescription for Sprycel; a medication that would save my life.

This medication was a part of my life for the first seven years of my journey. We had our ups and downs, but as far as controlling my CML, it did a pretty good job.

When I was first diagnosed,  I was told that I would be on medication for the rest of my life; for me, this is likely true. I pray that the journey will be a long one.

As time went on, and more and more people were living with CML and finding ways to connect, I began to observe different pcr results; I started seeing people report an "undetected PCR", and eventually these people were even attempting treatment-free remission.

This intrigued me, and I spoke to my CML specialist to see if I would someday be a candidate for TFR (Treatment-Free Remission.) At this point, I had yet to reach an undetectable state, and he thought that I would most likely never be able to join that group.

While my pcr remained stable in MMR (major molecular response) it seemed quite content to stay there. This was disheartening to me at that time, I wanted to be undetectable, too! It seemed that everywhere I looked, undetectable was the "topic of the day".

My oncologist and I discussed changing medication to see if that would help to nudge my pcr into a deep molecular response, but I was reluctant to change what was working, for the unknown. This is another topic entirely, although the time did come, (due to extreme pleural effusions), that I had to switch to Bosulif.

The switch to Bosulif, after several years, did nudge my PCR down into the double zero range, but I still have not reached the coveted undetectable state.

Somewhere along the line, I realized that TFR will probably never happen for me; but I have made peace with that. I am happy to be stable, with a decent quality of life. I can travel, spend time with friends and family, and dance socially with my husband. 

I have also picked up other hobbies along the way; crocheting cute creatures like Baby Yoda for children and creating watercolor paintings. I continue to advocate for other CML patients and have collaborated with others to create material for CML patients.

I continue to applaud those who reach and obtain TFR and I support those who do not. I believe that the people who reach an undetectable state quickly are most likely diagnosed with white counts much lower than my own. I am certain I had CML for quite some time before diagnosis, as I suffered from every symptom of leukemia.

I understand that many people are being diagnosed at yearly physicals, very early in the development of CML. I believe their chances of an undetectable state are much higher than my own, and that is OK!

Once upon a time, it depressed me, it made me wonder what was wrong with me, it made me anxious, and caused me sleepless nights. Now, after thriving with CML for thirteen years, I have a totally different perspective; I am stable, I am alive, and I am enjoying my journey. I have met so many fabulous people; warriors, fighting this battle alongside me, and others, fighting to help make our journey easier.

I have learned that it is so much better to be in the trenches with others fighting the same battle than to be fighting it alone.

If you are new to CML, or feeling unsure, frightened, or frustrated, reach out, there are others in your same boat, and there are many willing to help you paddle!

It isn't always easy, and it isn't always fun, but remember, you do not have to go it alone.

Embrace your journey, it is unique; it can be depressing and frustrating, but it can also be empowering, joyful, exciting, and extremely satisfying.

FaceBook: CML: A Place for Hope and Humor

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