Living with Chronic Cancer is Tough! Happy Nine Year Cancerversary!!

February 9, 2011

Nine years ago, I was diagnosed with chronic myelogenous leukemia. At that time, I knew nothing about blood cancer and didn't know whether I would live or die.

Nine years down the road I am still fighting this disease while continuing to learn whatever I can about CML, while advocating for myself, and others also living with CML.

All that being said, nine years down the road, I am happy to say that I have adjusted well to my "new normal" and that living with cancer is "just the way it is."

My journey, like most journeys, has been full of twists and turns. Good days and bad days, and ones in-between, too. I do not often wonder what my life "would have been" if I didn't have cancer and am grateful for all of the things that have happened "because" I have cancer.

February 9, 2020

I find life is weird that way; we either accept our fate and embrace it, or we don't. I am definitely a make lemonade type of person, for which I am grateful every single day.

The past two years, since switching from Sprycel to Bosulif have been by far the best years since diagnosis.

I believe that is a direct correlation to the change of medication. I was having my left lung drained every two weeks at the end of my Sprycel run, and despite there being a small effusion that remains, I have not had one thoracentesis in over two years.

I have more nausea, but less fatigue, muscle, and joint pain and almost no neuropathy; I call this a win. This coupled with the fact that I have had the best PCR results in nine years, and I am a happy camper.

As a matter of fact, three months ago, my PCR actually dropped to .0094!!! I have never hit the double zero mark before, and I was elated. You would think that having your blood tested once every three months, in order to assess the burden of cancer on your body would become routine; no big deal. Right?

Wrong; it is, and always has been A VERY BIG DEAL!! There is always hope and trepidation wrapped around those vials of blood. I always send them off with high hopes and good juju. Sometimes I am elated with the results, other times I am completely deflated.

So much to be grateful for!

This past year has been cause for celebration time and again, as every single test result was lower than the previous one; it seemed as though I might even become undetected, someday. This was something that we had taken off the table several years ago, as I was "stable"; my PCR results seemed to have hit a plateau.

And then came the switch to Bosulif and they began a downward trend, much to my surprise!
I had no idea just how "cocky" I had become; I assumed that my PCR results would just continue downward until the could no longer detect the BCR/ABL in my blood.

Wrong again! My latest test results actually came back higher than the previous .0094%. I was once again back to single zeros, at .02%  I was devastated!

Now I understand that that is an acceptable number, and more in line in what I am used to, but I am not going to lie; when I saw that test result, I just felt like crying. I had a pit in my stomach and it was hard to take a breath. I could not speak.

If I am lucky, I will make it to 95 like Aunt Helen!!

It was a feeling that surprised me, and I could not shake my disappointment. I know that in three months' time that a new test will replace this past test, but I also know that I will be wondering whether it will go up, or go down until the next results are in.

Hence the life of living with chronic cancer, I suppose. It is a reminder to be grateful every single day and to take nothing for granted.

I realized that day that no matter how "comfortable" you become, no matter how well you have adjusted to your "new" life of living with chronic cancer, there will always be that small voice asking "what if"? I guess that deep down inside, there will always fear of the unknown.

But for now, I am going to celebrate my nine-year cancerversay with a joyful spirit and a grateful heart.

I am so happy to be alive and pray that my good fortune will continue. I will continue to do my part.

1. Take my medication as prescribed.
2. Have my blood monitored every three months.
3. Adhere to my CML Specialists' recommendation.

And all of the other things that are required to live a healthy life.
I am beyond grateful to be nine years down the road from first hearing the words; "I do not know how to tell you this, but you have leukemia."

What a ride it has been!

Happy Cancerversary to me!


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