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“Hello!” from Selena, Your Leukemia Power Team Writer

Leukemia Power Team Writer Selena

Hello everyone!  My name is Selena and I am a 23 year survivor of acute promyelocytic leukemia (APL or M3), which is cancer of the white blood cells.

I am so honored to be chosen as a voice of advocacy, information and inspiration for all of you, my fellow warriors battling leukemia in all its forms.  I promise to do my very best to provide you with resources that can help you live your very best life despite leukemia.  I encourage you to contact me with your questions and suggestions for articles you want to read about leukemia.

Today I want to share my leukemia power story with you.

Let’s take a trip back to the Fall of 1987.   I was a senior in college at UCLA, studying kinesiology.  I was contemplating my next steps after graduation, from attending graduate school to deciding on a career path.  I was in a relationship with a guy I met on my dorm floor freshman year and thought he was the ONE for me.  I was inches from the beginning of my adult life…

Then I got sick with a stomach virus from which I never really fully recovered.  So I decided to listen to my body and focus on getting better.  Part of that decision meant putting school on hold and temporarily not attending classes.  ‘No big deal,‘ I thought, ‘This will just be for a few weeks, until I get better.

Only what happened is that those few weeks turned into three months of going to doctors with vague complaints of fatigue, lack of energy and just not feeling like myself.  The only answers I received were that my blood counts were low, possibly as the result of the viral infection I had in September.  Given my age and overall appearance of good health, the advice I was given was to “wait and see” if my counts would start going back up in a few weeks.

As a last resort, I went back to see my former pediatrician a few weeks before Christmas.  He too checked my blood work and advised waiting a few more weeks.  But after re-checking my blood counts after the holidays, he grew extremely concerned when my white blood cell count (WBC) dropped to .9 (normal range is 4.3-10.8 × 103/mm3.) He immediately sent me to see an hematologist in January 1988 for a bone marrow biopsy.

As I waited the day or so for the results, I marveled at how, with such a terribly low WBC, I had been able to avoid getting sick while shopping in the crowded mall after Christmas.

After three long and dragging months of waiting, everything seemed to shift from low to high gear in just one day.  The biopsy came back positive for leukemia.  Treatment at the local community hospital with the hematologist who performed the biopsy was discussed, but I had somehow already decided that I wanted to be treated at UCLA.  So from that appointment, my parents and I traveled to the UCLA Medical Center and met with the hematology-oncology doctors there later that afternoon.

By the end of the day on January 13, 1988, I was admitted to UCLA Hospital, been told I was in for the fight of my life, had reviewed and signed the consent forms for a clinical trial and was set to begin treatment right away.

For me, my battle with leukemia took place 4 to 6 weeks at a time, when I was hospitalized for chemotherapy treatments and spent the subsequent weeks in isolation waiting for my bone marrow to regenerate and my blood counts to go back to normal.  Initially, there was talk of performing a bone marrow (a.k.a. stem cell) transplant, however, when my siblings and parents failed to match as a donor, chemotherapy became the recommended treatment.

One month after my diagnosis, I learned I was in remission.  That same week, I also got dumped by my boyfriend.  My parents moved me out of my apartment and back to their home during my first hospitalization.  I’d gone from the being a happy, independent, going-places college co-ed to a heartbroken, sick chick living with her parents, her future uncertain.

All in all, it took eight months for me to complete my leukemia treatment, from January to August 1988.  I dealt with my fair share of bumps along the way.  My treatment was complicated by a serious bacterial infection and disseminated intravascular coagulation (DIC). I spent a lot of time alone in a hospital room with only my books, arts and crafts projects, stuffed animals, journal and a CD player, TV and VCR to keep me company.  (Remember, this was 1988, a time before iPods, laptops, WiFi and Blu-ray!)  It took me a while to get back on my feet after treatment, but with persistence and patience, I once again moved out of my parents’ home, went back to college, got both Bachelors and Masters degrees, discover my career path and found love again.

I may have been lonely at times, but the most important thing I learned during my cancer treatment was that I wasn’t alone.

You see, I met a lot of other young adults battling cancer like me, in the waiting room at the clinic, in the hospital and at a support group I attended for several years after my treatment.  I found a tremendous source of support by reaching out to my fellow warriors, support I believe was key to helping me cope.  I wish I could tell you that everyone I met went on to survive cancer too; it saddens me to tell you that some of my friends didn’t beat cancer like I did.  They touched my life with their open and honest sharing and caring and it is their warm love and generous giving that live on in my heart to this day.

The good news about promyelocytic leukemia is that the survival rate has gone from 33% in 1988 to around 75% today.  In fact, treatment has advance to the point where many of the chemotherapy drugs I received in 1988 are no longer used to treat this form of leukemia today.  I like to think that my participation in a clinical trial made a small contribution to the advancement of leukemia treatment and better outcomes for those diagnosed with leukemia today.

I hope I have inspired you with my leukemia story.  Please leave me a comment because I’d love to hear your feedback, including your own thoughts, questions and suggestions.  Perhaps I’ve even inspired you to write and share your own power story.

I’ll be back next time to talk about some of the strategies I used to cope with long hospitalizations during my leukemia treatment.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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7 comments

  1. Selena, you are a fighter and kicked APL in the a$$. I was diagnosed with APL at the age of 29 in 2005 after bleeding out so much they had to admit me. Since then I have had complete lung failure, suffered two TIAs, and lost feeling on the left side of body. I have been looking for someone to talk to about all of this, all of the side affects.
    I am so proud of you for coming forward with such a personal story, willing to help others, comfort others. Thank you.

  2. Wish I had found this, and you, summer of 2010, when I was diagnosed on 4th of July-one month before my 49th birthday. Couldn’t find anyone anywhere to talk to about this particular cancer. Very scary! 3 months after my diagnosis I was in remission and in the 4th month after I had my last chemo treatment, although continued Atra through July of the following year. I was off work for 5 months and find it frustrating when people ‘wonder why I couldn’t work’, you know-like breast cancer patients, prostate cancer patients, etc. They just don’t get it. July 4, 2012 I’m awaiting my 2 yr anniversary from when I was diagnosed. Oncologist said that was a huge milestone! 🙂

    • Congratulations on 2 years coming up! That’s fantastic. 😉 This coming June 5 is the 6th anniversary of my diagnosis with AML-5. I was what I thought a healthy person who ate good, exercised, didn’t smoke or drink. Just weird that I would get leukemia of all things. That February I had preventive screening at work and my blood work was perfect. Two months later all hell broke loose when I was supposed to have a hysterectomy. Never ended up having the hysterectomy, but that’s part of the long story I’ll need to write. I’m so blessed to be alive.

      I know back then there were no people to relate to. The hospital is wonderful, but there is so much freakiness about the privacy. I so wish we could have met the other patients and talked about our illnesses. It would have been of tremendous help with the unknown. Wow! I just heard about this site through a FB friend. It was kind of weird getting to this site through the Fight Like a Girl site. Anyway, great news about your 2nd anniversary coming up.

  3. Heather Schisler

    Selena, thank you for sharing your story, and congratulations on remission for so long. I was diagnosed at age 29, April 27, 2010 only after 1yr of having a ASD closure (hole in the heart closed) After coming off my plavix i was diagnosed several weeks later after getting these really nasty bruises all over, and my gums started to bleed. I had blood work done (20 tubes taken) and went to work, and got the call i needed to go to the hospital. There an oncologist told me you have leukemia and sent me right to Johns Hopkins in Maryland. The hardest part for me was leaving my 10yr old daughter, and family. who would now be 2hrs away. Once at Hopkins the Dr came in and said u have two choices either fight this or die in 1wk. I had no option i had to fight. I signed up for a clinical trial as well. I was told that it had great success over sea’s and was starting to be used in the US. I was the first APL patient at Johns Hopkins to sign up. Here i am after a long battle starting April 27,2010 and all treatment ending December 27, 2011 I am in 2yrs of remission and happy and healthy.

  4. Thank you so much for posting this, is this forum still active? I have APML since last June and can never find people to talk about it and share with for exactly the Acute promyelocytic like you have. I am happily in complete Molecular remission right now but still have treatments. Please let me know if this is still a source of support? Thanks,
    Kelly

  5. Thank you for posting this. I have just been diagnosed with apl and still on the induction part of chemo. I am currently on atra and arsenic. Any insight and/or positive thoughts on what to expect for the upcoming consolidation therapy? I am also glad to see more stories on surviving this 🙂

    • Hello Kay, I hope your treatment is progressing smoothly. I was diagnosed in Feb 2013, after feeling suddenly and dramatically unwell at work and immediately driving myself to Hammersmith A&E department. I was quickly diagnosed, commenced treatment, developing ATRA syndrome a week in but got myself through it…..I lost all my body hair (except eyebrows and eyelashes bizarrely), a lot of weight and slept for England (still do). I have been in remission since September and am grateful for every moment of my day and everything in it. I used to run but can only swim at the moment. The treatment drugs did terrible things to some of my joints and lower leg muscles. I don’t mind too much though as I feel a little better each week. I appreciate things differently now but do feel consistently inadequate when trying to find the right words to describe how amazing the NHS has been. I’d like to know how you are now…….I guess your treatment has not quite finished yet? Regards, Gail

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