One day when I was in my 20s, I noticed I had several purple blotches on my legs.
I went to my primary care doctor.
He took blood work and looked me over.
I was driving out of the parking lot, when the doctor’s office called me on my cell phone and told me I needed to go to the hospital immediately.
They didn’t tell me too much at that point except they believed I had some form of leukemia.
Needless to say, that two-hour drive seemed like forever.
With so many thoughts in my head.
Not knowing what to expect.
Would death be knocking on my door?
Would it be something manageable?
How would this affect my future?
The hospital – – was about two hours away.
I was admitted to the hospital, and I was diagnosed with chronic myeloid leukemia – in December I’ll celebrate living with CML for 15 years. It’s hard to believe it has been that long.
The only thing I ever heard about leukemia at that point of being diagnosed was that I knew a child that went to my school when I was younger who died from it. That was all.
The doctors and nurses at the Medical Center were amazing. I only had to stay in the hospital less than a week. Thank you to my Doctor , who continues to be my oncologist to this day. The two-hour drive is well worth it.
Previously, I never had any other significant health challenges, so this diagnosis was totally unexpected.
However, there were extended family members who had other forms of cancer in the past.
I was prescribed oral chemo medication called Gleevec (I now take Sprycel – sometimes one of the medications become immune to your body over time). Thank goodness there are a number of options out there for oral chemo medication for CML.
I take one dose of Sprycel daily at 100 mg, and I been blessed to not suffer from any side effects.
The medication is extremely expensive. I believe it costs over $10,000 a month for the medication without any insurance or assistance (sometimes the pharmaceutical companies offer financial assistance and organizations like The Leukemia and Lymphoma Society). I am blessed to have insurance that covers the cost of the medication.
The Leukemia and Lymphoma Society has been extremely helpful – in terms of providing financial assistance, they’re constantly doing research, as well as offer a family support group that my mom often attends.
UPDATE: I recently went to my oncologist and the percentage of my leukemia cells versus non leukemia cells is going up slowly, so I may need to change my treatment again. I’ll return to the oncologist for another appointment in 3 months, and if the numbers are up again, we’ll consider other options. Please pray that my numbers don’t keep going up. As I do get older, I get more worried about what the future holds. I am only 43 years old and married to my amazing wife Joy, and we have two beautiful children – Megan, 10, and Katelyn, 7.
SHARING MY STORY
In the past, I was often reluctant to share my story of living with leukemia because I was afraid people would look at me differently or it would be hard to get business or find a new job. I currently own my own business – Sohn Social Media Solutions – where I help entrepreneurs launch or level up their own live shows to make massive impact.
On June 6, National Cancer Survivor Day, someone on LinkedIn named Steve Sullivan shared his story of living with leukemia for 30+ years, and he along with Nancy Barrows, creator of the #RadiatingReal movement, inspired me to share my story, for the first time ever, in depth, on live shows.
I shared my story of living with leukemia on several live shows including Jenny Gold’s PodcastNotPodcast show: https://fb.watch/7K9PnqmNEo/ as well as on Nancy Barrow’s Connected Human Conversations show: https://www.linkedin.com/posts/james-jimmy-jam-minarsich-08aaa273_linkedinfam-connectedhumanconversations-radiatingreal-activity-6808795267270373376-YwN0.
A few months ago someone reached out to me on LinkedIn who was diagnosed with chronic leukemia in May.
Part of the message he sent me read, “Thanks for reaching out and connecting. I actually found you searching on LinkedIn. I was recently diagnosed with leukemia, and I’m trying to find my way after the diagnosis …”
Recently, I finally had a chance to hop on a call with this leukemia survivor.
He told me he found me by typing leukemia in the search bar in LinkedIn, and I have “Leukemia Survivor” in the title of my LinkedIn profile.
We had an amazing conversation, sharing our stories, laughing, asking questions, getting to know each other personally – and professionally.
I now have a new friend – and we’re going to stay in touch.
If you have leukemia or a family member or friend does, please don’t hesitate to reach out to me:
Tim Sohn is an almost 15-year survivor of chronic myeloid leukemia. Contact Tim at firstname.lastname@example.org, or connect with him on LinkedIn at https://www.linkedin.com/in/timsohn or on Facebook at https://www.facebook.com/timothyjsohn.