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Weird cancer (writing therapy)


It’s weird, having cancer. I guess I’m lucky to be able to say it’s weird rather than terrifying. It is terrifying sometimes, but it’s not going to kill me, at least not directly.

Cancer was discovered in me by accident, which is often the way with chronic myeloid leukemia. At a regular checkup my doctor asked if I was okay with doing some basic blood tests, since it had been several years. A few hours later he left a message on my voice mail: Call me. Today. I’m not leaving the office until I hear from you.

Uh oh.

My white blood count was astronomically high, leading the doctor to believe I had leukemia. He had made an appointment for me first thing the next morning at the cancer center for tests to confirm it. More blood tests, bone marrow biopsy from the rear of the left hipbone, many unintelligible explanations throughout the day from the oncologist about bone marrow, FISH and PCR, cell differentiation, blah blah blah.

In plain English: There was good news and bad news.

Bad news: I have cancer
Good news: This cancer is not fatal anymore; I will live a normal length life
Bad news: There is no cure for it
Good news: A single daily pill will keep it at bay
Bad news: The pill costs $120,000 a year and has some side effects
Good news: My insurance will pay for most of it
Bad news: I will need quarterly blood tests for the rest of my life
Good news: If you have to have cancer, this is the very best one.

So, just as life gets divided into before and after marriage, and before and after kids, now it has become before and after leukemia, this fairly rare cancer of the blood. I don’t look much different: still have all my hair and don’t have to endure surgery, chemo or radiation treatments. I have gained some weight, but that’s typical for women my age, and the daily pill makes my eyes puffy so I look older, and tired. Much of the time I am tired, and my joints hurt and sometimes I get cramps in my feet. We don’t know if those things are because of the disease or the pills, and what does it matter anyway?

A few weeks after the diagnosis the regular doctor said my case is “a testament to the ability of the human body to compensate under extreme duress.” That makes me feel strong, but leading up to the diagnosis, weird things were happening in my body. As my white blood count crept up to more than 25 times the high end of the normal range, my spleen swelled (I didn’t know what that odd feeling was below my left ribcage, but it didn’t hurt so I ignored it), I was always conscious of my heart thumping, I slept badly and woke up frequently all sweaty. Through the cold winter I slept in nothing but a lightweight tank top, and often changed it a couple of times during the night, and kept a bedside fan running. I figured it was just menopause.

Now, more than a year in, things are pretty good.

But weird.

Sometimes I skip a dose of my lifesaving medication. I can’t explain why, except that it’s annoying and depressing to be dependent, probably for the rest of my life (which statistically is close to 30 years left!), on a pill whose price for a year is about three times my annual salary. It’s a racket, for sure, and it makes me mad, and I want to protest. It also raises all kinds of ethical questions.

Is my life worth it? Is my insurance plan absorbing the cost, or are others being impacted by my treatment in the form of higher premiums?

Can I refuse treatment? How long will I live, if I do? What would it be like to die of leukemia? Do I owe it to my family to stay alive artificially in this way? Does God want me to die (because he gave me cancer) or live (because there’s a good treatment)? Is there some important life lesson here that I should be learning as a result of this burden, which honestly is not really such a burden?

Is it selfish for me to feel grateful? Is it selfish to feel guilty? How can I give back enough to the world to justify this cost of keeping me alive? Do I have survivors’ guilt or is my feeling just pure sadness? How can I justify feeling sad when I’m not really that sick?

The real answer is that I should just live my life. I know that in my brain, if not in my heart. I will try. In the face of weird cancer, I will try to live normally, gratefully, hopefully.

So well said, exactly as I feel and experienced just 4 months ago. Thanks for articulating it so clearly. One difference is that I am old, well over 70, but more than all there..or here.  Few if any postings from older CML people, perhaps because they do not have the computer skills.  I am stunned by the number of much younger people dealing with this, having to go to work and live a life.  I deal with it in my impaired retirement.

I am in the USA, and though on Medicare and Plan D the drug cost is huge. Also, I am in what I call Leukemia Limbo. Gleevac did not completely work, BCR ABL only down to 38%,  so after 3 months I am on Sprycel and we are waiting to see what happens. I am fortunate to be a patient at one of the major research medical centers, Mayo.  This because my niece demanded I go there as soon as the word Leukemia was pronounced.  And yes, I was diagnosed by the classic accident. I went to see my Internist with a hip problem which we thought was a hip replacement misbehaving. He did a blood test to rule out an infection and 2 hours later I was phoned and ordered to a local ER where I was told, gently, that I had some form of a Leukemia.  No symptoms except being very tired. My white cells were at 303,000. At that point my niece, an Internist across the continent from me, got on the phone and demanded I transfer to Mayo..only 2 hours away. I had been a patient there so the transfer went smoothly.

 I was met at 3 in the morning by a team armed to test and treat and reassure and help. I am secure in knowing that my Oncologist-Hematologist and his colleagues are checking, testing and exploring all avenues. I, for once, do not have to worry and second guess if all avenues are being explored. Now I am back home and wait and try not to worry about what each weeks blood test shows. I am an awfulizer..always the worst case scenario. But this is the best Leukemia..right?  Biggest problem is not telling people, and if I do, calming them and not frightening them.

i have been following this Board for a month or so and so appreciate it. The one in the US does not meet my needs as well.  Thanks to all of you for sharing.

Hi Justine, I think writing this and having it seen by people who are going through what you have been through helps you and them. Well done.

I was slightly surprised by one thing - cost. Firstly I am sure your friends and family would say that $120k is cheap to keep you alive and in their lives. However I think you said you were on imatinib, which is now off patent. I'm not sure what Novartis are charging for the branded Glivec/Gleevec these days but I understand the generics are available around the $5/day mark for a 400mg dose. I was moved onto the Wockhardt generic around 16 months ago - only difference is the coating tastes awful. So your insurer might not be paying out as much as you think.

For some reason, this caused tears in my eyes...
Thanks, you are so sensitive and exactly described what happened to most of us 

Thank you for sharing Justine.My husband was diagnosed last Sept. 

After the shock, then relief at Sprycel working, there have been some down days. He feels so much better than he did before diagnosis, yet life doesn’t feel normal. He has some days where he just gets so tired at the end of the day.  He also got very puffy, itchy  eyes and that really did get him down because it was a constant reminder of the CML,  and he felt very self conscious. However, he’s now on a reduced dose of Sprycel  (50) plus taking 8 mg of Curcumin a day ( $100 a month so expensive) but the puffyness has gone, so we are hoping for the best. 

Please don’t skip your meds . I believe just missing a few pills a month can really impact the drug’s effectiveness. Also check out Curcumin. I think taking something that is good for your overall health as well as the cancer has really lifted my husband. 

Best wishes, Louise 


Just beautifully written Justine.  We all feel and have felt exactly as you wrote.  The world needs people like you and we fellow CMLers also need you. Thanks

Wow,Hello Justine ,how perfectly written almost my story exactly and sort of the way I feel.I am in the UK we are lucky to have our National Health Service which we pay into during our working life so not sure of the cost of my Imatinib. Up to now I have never missed a dose tho too scared to do that was diagnosed just before Christmas 2017 .Please  don’t feel guilty that your insurance is paying for your medication you have probably been paying it for years but not needed to use it .Wishing you and all of us CML ERS the best of health .Regards Denise .x


Right you are, Alastair. Thank you for that important point. I was on Gleevec until November. Since then they have been sending generic, and the price has come down by about 2/3. The oncologist says it might not stay down because sometimes generics go back up again. At our last visit he went on a bit about how medical supply prices have gone up, or become unavailable, because of the hurricane in Puerto Rico last year. Anyway, I am taking poetic license to make the point and perhaps I should not do that here, where we are concerned with facts and science. Part of the experience for many of us, though, is the disconcerting dependence on a product whose pricing we don't fully understand. My current tablets are manufactured by Sun. I would feel much better if we had some certainty about its affordability and availability going forward. Of course here in the US we do worry about insurance coverage since there are no guarantees for us until we reach age 65, which is a decade away for me, and many with CML are much younger.

Thanks for the kind comments. It feels isolating at times, and I knew that this group would understand. Thank you all and thanks to David and Sandy for keeping this site going for all of us.


Thank You,

Very well said Justine!



Hi Gitel!

I was diagnosed with CML on Feb 12th of this year.

I turned 71 the end of March.

I reside in North Western New Jersey 

I am also retired  (since 2003)

I'm on 80 MG of Sprycel ( down from initial 100MG).

Next blood test is this coming Monday April 30th.

Sprycel has lowered my WBC count, hopefully you will get good results also!

All the best!




Justine - I have been meaning to reply to this thread but never got the time to really sit down and do it right.  But I can't let this go by (or "below," as it seems in our scroll world) with saying, quickly, that you are a WONDERFUL writer!!

Hi Justine

I just want to thank you for your post - you have summed up what all of us go through on a daily basis and I think it was really courageous of you to put it into words!  One quick thought on the cost of treatment and that other people's medical aid premiums are keeping us alive:  I have discussed this problem on a regular basis with my colleagues and friends as I also feel guilty because of the high cost of the medicine.  The response I got was an overwhelming "We are so happy that the medical aid is working for someone!" every time I raised this problem.  I have even used my own example in my classes when teaching students about medical aid (I'm a high school teacher) and I have sometimes had a round of applause when I explain how the medical aid ensures that I will not die of CML.  On the whole, I think people are happy when they realise that their premiums are being put to good use to help others instead of simply making the executives in the medical aid company richer... at the same time, I am concerned that the cost of the drugs does not seem to be reducing in the slightest despite the drug companies surely having recouped the costs of development by now!  So perhaps there are some executives, somewhere, who are becoming richer as a result of our disease.  However, if this is the price to pay to stay alive, I will take it!

Thanks again and good luck with your recovery.



Chuck, how did your blood test result come out?

Thank you for saying exactly what I felt just one month ago. Although I feel much better about my prognosis, CML is still the first thing I think of in the morning and last thing before I go to sleep at night.

I feel unbelievably fortunate to have a cancer that has numerous drug treatments and have to remind myself of that daily. I've never questioned "Why me?" but rather "Why not me?" I've taken very good care of myself and lived a healthy 72 years but there are factors and genes that are totally out of one's control. Taking medication daily is not a chore but a blessing...just like brushing my teeth, it's what I'm doing to take care of my body.

I hope that you're doing well and will continue to share your journey with us.

Very nicely written Justine. Sums up how a lot of us feel, or have felt. 

It does get easier, as you adapt to your new normal - as I’m sure you’re finding.

But don’t skip your pills. It’s really not a good idea. Full adherence is really important. I’m obsessive about it and have an app to remind and log every time I take mine. Haven’t unplanned missed a dose in 7 years.