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Let’s Talk About Life After Cancer

Leukemia Power Team Writer Selena
Life After Cancer Power Team Writer Selena

Hello again!  It’s me, Selena.  In addition to being your Leukemia Power Writer, I also have the privilege of being your Life After Cancer Power Writer too.

I was just reflecting on a pretty amazing fact the other day.  Did you know that I have lived 23 years beyond my leukemia cancer diagnosis?  The anniversary of my remission actually just happened earlier this month.  Did you also know that I have now lived more years as a cancer survivor than I have as just a plain old ordinary person without cancer?

Pretty impressive for a girl that was only given a 33% chance to survive her cancer at the time of diagnosis in 1988.

Looking back at all of this now in 2011, I have to say it is all pretty mind-boggling.

When I finished treatment by my 23rd birthday–one I honestly didn’t know if I would be here to enjoy–I had no idea what cancer survivorship would mean to me.  I didn’t consider it might mean traveling through life with new problems and challenges that were the result of my cancer treatment.  Like many cancer survivors both then and now, I thought that when I finished treatment the cancer chapter of my life would be over.

After all, once I got to the five year remission milestone, my oncologists stopped following me.  For all intensive purposes, it was like they stamped “cured” on my file and sent me on my way.

Little did I know that those nagging little questions I pushed aside during my battle with cancer would come back to haunt me.  Questions like:

  • Are all those chemotherapy drugs they are giving me doing some else besides killing my cancer?
  • Is it bad that I am getting so many blood transfusions?
  • Will my cancer treatment make me infertile like the doctors warned me?
  • Will cancer affect my life moving forward?
  • Can I just go back to “normal” once my treatment is over?
  • Since I’ve already had cancer once, I can’t get it again, right?

Twenty-three years later, I know in no uncertain terms that being a cancer survivor can presents many challenges.  There are late and long term effects from the cancer treatments themselves: surgery, radiation and chemotherapy.  There are issues that can arise in the areas of school, work, relationships, family building, health and life insurance.  There are impacts on self-worth, self-esteem, feelings and moods.

Fortunately, the medical community has begun to recognize the needs of cancer survivors.  In 2006, the Institute of Medicine (IOM) published the report “From Cancer Patient to Cancer Survivor: Lost In Transition” which advocates for all cancer survivors to receive a comprehensive yearly survivorship care plan to address their medical and psychosocial needs.

I’ve been attending appointments at the UCLA-Livestrong Survivorship Center of Excellence since 2006, and the doctors there help me maintain my health and address my specific late and long-term cancer treatment concerns.

Yes, I’ve learned the hard way over the last 23 years about what it means to be a cancer survivor.  My desire to share what I know and provide resources to help fellow cancer survivors like you are just a few of the reasons I became your Life After Cancer Power Team Writer.

I also want to hear from you about your questions and concerns about life after cancer.  So please, leave me a comment here or contact me via email.

Next time I’ll talk about reliable resources for educating yourself about many of the issues that face cancer survivors.

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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  1. Bonnie

    I also am a leukemia survivor. On February4, 2011 it had been 20 years since my autologous bone marrow transplant. I was diagnosed with leukemia in the spring of 1990, and after almost a year of chemotherapy, I was considered in remission. Because I had no family that matched as donors nor any match on the bone marrow regiistry I had an autologous transplant where they harvested my bone marrow and gave it back to me after recieving massive doses of more chemo. I was in a “bubble” for 4 weeks and 4 days. Since then I have had many issues that I have dealt with that were caused by the chemo and transplant., I had avacular necrosis if both hips, where the blood flow was cut off by the steroids needed during treatment of the cancer, this caused the ball and joint socket to “die” and erode. I have had 2 total hip replacements on both sides. The upper right leg bone shattered during a second hip replacement, caused by osteoporosis caused by the chemo drugs. This bone had to be rebuilt with donor bone. I had a heart attack in 2008, caused by cardio myopathy , damaged heart muscle by the chemo, I also have coronary artery disease, and a strong family history of heart disease. I had both lungs fill up with blood clots, drs. could not understand why I survived nor could they find a cause for the clotting, I had a greenfield filter put in my vena cava to filter out the blood clots. I also have fibromyalgia, whose cause is unknown, but stress does aggravate this syndrome. I am so grateful to have survived the leukemia, I have a wonderful husband who has been with me through all of this, I have watched my children grow to be adults and I have seen 8 grandchildren born. So I am not ungrateful, but I just want to say that there are many side effects of the cancer treatment. Congratulations Selena on your survivor annniversary. Bonnie

    • Maria Alvarado

      Hi Bonnie, Wow I’m speechless, I’m 10 months in remission, I had cancer in my right maxillary sinus, I had major surgery with 35 treatments of radiation and 3 rounds of chemo, my Dr. said he was giving me 1 of the strongest chemo ” cisplatin” does it depend on what kind of chemo we get for all the side effects? I can now see all the damage that radiation caused on my face, I now need to have some reconstructive surgery, and I get pretty down about how I look and what I will look like after surgery 🙁 Help Selena or Bonnie…I’m 42 yrs old a single mother of 4 kids, 2 are over 18 YO and the other 2 are 11 and 12 yrs old

      congrats Selena on your Anniversary :)………God Bless Maria

  2. Penny

    I am still fighting and have often wondered about after..Thanks for posting this info.

  3. Xanthe

    Dear Selena,
    It’s a real comfort to read your writings. I needed to hear what you have to say.

    I am tired and worn out from trying to get people who haven’t got a clue to understand what I’m going through. I was diagnosed at 40 with a 1 cm area of DCIS (Ductal Carcinoma In Situ) which is in the breast. It wasn’t actually cancer, but the medicos like to cut it out anyway.

    A butcher of a surgeon CUT THROUGH the MIDDLE of the affected area. So what was supposed to be a routine operation led to a disaster. In less than 18 months, a tumour the size of an orange had grown in the left breast. The Drs said I had a 50/50 chance of survivng past 2008.

    After 7 years of chemo, radiation, and many surgeries, I am wandering around, ‘lost in transition’, as you mention above. I am grateful to have survived and I say a prayer of thatnks every day.

    What is so difficult for me is that everything was smashed during the 7 years of cancer treatment. My life is like Ground Zero. My fiance left with a 19 year old. My fertility was destroyed, so I have no children. I haven’t been well enough to work.

    I feel like I am on the outside of humanity, looking in. I have no idea how to rebuild a life that is worth living, or what I have left to offer the world.

    I used to be confident, active, pretty, and able to achieve goals. Now, some days I can’t leave the house.
    I plan to go to your link about Transitioning. The only thing that is keeping me alive is the hope that gradually some love will come into my life. I have a lot to give. I need to find somewhere to give it.

    God bless you all here, and keep you well and happy.

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