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A vacation abruptly cancelled to start leukemia treatment

AML survivor Janine Ison
AML survivor Janine Ison Photo courtesy of Janine Ison

I had been feeling really exhausted for a while – so tired that I needed to take naps in my car while at work. I also had unexplained pain in my shoulders that would not go away.

I went to my family doctor who sent me to a rheumatologist to check if I had developed rheumatoid arthritis or another type of autoimmune disease.

I saw the rheumatologist in September 2013. Just two hours after that exam, that doctor called to say I needed to see a hematologist because my red blood count, white blood count and platelet count were all through the floor, well below the normal ranges.

For some reason, I was not immediately worried about it being cancer. I continued to work at my bank job. In fact, the first time that the possibility even occurred to me came two weeks later when I went for the hematology exam. His office was at a cancer clinic.

When you see “cancer” on the building sign, you think, “Oh, wait a minute.” I flipped out.

The hematologist scheduled me to undergo a bone marrow biopsy with an oncologist. When those results came back, the oncologist asked me to come in. I remember this vividly. It was one week earlier than I was scheduled to return. It was a Friday, just after work, Oct. 11, 2013. I was supposed to start a vacation the very next week.

On that Friday night, I was told I had acute myeloid leukemia, AML. I was hospitalized on Saturday. I started chemotherapy on Sunday. Talk about the rug being yanked out from under your life.

I also was told I’d need to remain hospitalized for 30 days. As I received all this news – all at once – I couldn’t catch my breath. I couldn't believe I had cancer and that I was being taken from my husband, home, job, pets, and everything else in my world – to be hospitalized for a month.

On Sunday, when the nurses began giving me chemo, they walked in dressed in what looked like “Ghostbusters” gear: facemasks that covered them up, and gowns. It was really scary. And, I was still in shock, crying all of the time.

About 10 days into the chemo cycle, I could hardly speak or move. I was so ill and so immobile. It was terrible. I had visions of things that were not happening. I thought my hospital room was constantly changing. I was hallucinating.

Finally, after that first month, I got a welcome chemo break and returned home very weak and 30 pounds lighter. But more chemo soon would follow. So would a horrible infection that sent me back to the hospital where I spent 10 days on a ventilator. I don't recall that time but, I was told later, I had a lot of family surrounding me, holding my hands.

I was discharged on Dec. 4, 2013, my 25th wedding anniversary.

Once that difficult period was over, I went to Seattle Cancer Care Alliance in February 2014 for a conference and to begin outpatient testing to see if I was a good fit for a bone marrow transplant. I was. I was later admitted to the University of Washington Medical Center. My transplant was scheduled for April 9.

A matching bone marrow donor was found. Then, that first donor fell through due to the person’s health issues. Within a week, though, they had a new donor lined up for me.

I was very blessed to have a donor. I realize that it sometimes takes people a long time to find one. And some patients never find one. My donor lives somewhere in Europe and is a 31-year-old male. That is all I know about him, though I did reach out to him with a letter of gratitude.

If he never contacts me, it's all right. I am so grateful to him and could never properly express that gratitude. He saved my life. I cry nearly every time I think about how a person could perform such a selfless act.

I stayed at UW for couple of weeks after the transplant. I was extremely weak but doing well when I went home for good. I never had to be re-hospitalized. I was lucky. I have fought chronic graft-vs.-host disease since my transplant. But I wouldn't trade a day of my treatment.  

While at SCCA, I had an amazing nurse named Pat, who I will never forget. I saw many doctors, too many to count. They prepared me for every step. A nutritionist worked with me during the process and beyond. The medical staff has provided follow-up testing and care, and I found an oncologist – one who works at SCCA – for my forever care.

I could never thank SCCA for their loving care during this process. I felt like my hands were held the whole way. But they also were teaching me all along so that I could again be on my own – and not need their handholding.

I have been in remission since July 2014. And, hopefully, I’m on the lifetime plan.

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Last Modified, October 28, 2019