My Long, Strange Trip

Published August 1, 2017 by Deb Ragosta

If someone told me on my 35th birthday that on my 63rd birthday, I would be looking back at 28 years of living with breast cancer, I probably would have told that person I was too young to get breast cancer because only older women like Betty Ford, Nancy Reagan and Shirley Temple got breast cancer. In 1990, breast cancer awareness was just coming into vogue as was a world where we sold our souls to the purveyors of pink. Following my stage 1 diagnosis in 1990, I walked the walks, wore the ribbons and bought into the Komen karma. Even after my diagnosis, however, I never really thought someday, I’d be dealing with a much more dangerous and deadly intruder. It really wasn’t talked about, probably because the fundraising organizations wanted to present a feelgood, everyone-gets-cured vibe.

Almost 20 years later, a freak accident led to the discovery that the breast cancer had spread to my bones. In the click of an x-ray, I went from cured to terminal. In the 8 years since that diagnosis, I’ve been told many times by both family and friends something to the effect of “I don’t know how you do it” or even asked, “how do you do it?” My answer is that I take one day at a time and live my life as a woman who happens to have stage 4 breast cancer, rather than as a terminal cancer patient who happens to be a woman. I could have easily let having metastatic breast cancer take over my life, especially with mortality statistics that are very easy to find with a simple Google search. Support groups (both in-person and on-line) can be a great help, but it is very difficult to lose a person you’ve shared your deepest thoughts with. When that happens, it’s hard not to let the reality of the disease take over. I’d like to think they are living on through all who were affected by their abilities to help and support others, even as they came to the end of their own journeys.

I can’t say those dour stats didn’t upset me. When you’re at day one of a diagnosis then find National Cancer Institute statistics stating the chance of living 5 years with that diagnosis is 14%, it’s hard to stay focused and positive. When the same renowned authority says the median survival rate is less than 36 months, the future sure doesn’t look very promising. I decided early on, however, that I could either let myself fall into a pit of despair or make a conscious decision to fight the effects of knowing that one way or another, I was going to be a statistic. I chose to think of myself as someone on the positive side of the statistics, rather than one destined to be on the negative side. That made all the difference for me. Having stage 4 breast cancer is not the first thing I think about in the morning, or is it the last thing I think about at night. It is not what controls my life and the non-medical choices I make.

Of course, I’ve had setbacks. Unfortunately, we all do. I don’t like having to change a medication because it’s not working for me anymore. I’m currently participating in a clinical trial at Dana-Farber Cancer Institute in Boston, testing dosage for a new drug, Enobosarm. I began the trial in April and thus far, all is well. My scans are good and my CA 27-29 tumor markers have dropped from 114 to 48 (the upper normal for this marker is 36.) There are still a few oral medications I haven’t tried yet, but I felt the time was right to participate in another clinical trial.

I’ve been on trials before, including one in the 1990’s which tested the efficacy of Tamoxifen for certain stage 1 breast cancers. Now, Tamoxifen is the standard of care for my type of cancer and is often the first line of treatment for estrogen/progesterone positive breast cancers in premenopausal women. Even though the magical cure for breast cancer hasn’t been found, the more drugs gaining FDA approval, the more choices we have, which will hopefully add years to our lives. I participate in the trials for my daughter, my granddaughter and the women and men of their generations who might face living with breast cancer at some point in their lives. If my cancer progresses while I’m on Enobosarm, I’ll go back to Ibrance, which is the latest drug to gain FDA approval for certain types of breast cancer and is widely prescribed. Participating in clinical trials allows me to have some control over a disease I can’t control.

As I get further and further removed from those NIH statistics that were reality in 2009, things have changed. There is still no cure, but more patients are living longer and there are even clinical trials for patients who are in the “10+ year club” since their stage 4 diagnoses. I hope to be able to participate in one of those trials and have no reason to believe I won’t.

When I was 35, I was diagnosed with Stage 1 breast cancer. Almost 20 years later, I found out my cancer had spread to my bones. I was 55. Today, I am 63. To quote the Grateful Dead, “what a long, strange trip it’s been.” In my almost 28-year journey with breast cancer, I’ve had my ups, downs and in-betweens but I never looked back, never had regrets and never gave up the hope of a better day.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

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12 comments on “My Long, Strange Trip

  • I’ve not heard of AR+
    I’m ER + PR+ Her2-

    I had invasive lobular breast cancer in 1999 and Mets to bones only in 2015

    I’ve been on arimidex, faslodex and xgeva for 2 years and just found out I have progression so I’m continueing xgeva and taking a break from treatment.

    Like

    • Hi, Sharyn,
      AR+ is androgen receptive. I think it’s something relatively new as far as testing and staging breast cancers. I got almost 5 years from Arimidex, but have since been on faslodex, aromasin and the Ibrance/Tamoxifen combo. I’m hoping your mets is still to bones only. Mine is, and I dread the day mine spreads outside my bones.

      Stay strong and thanks for reading my blog!
      Deb

      Like

  • Deb: I’m a friend of Linda Moss and read your post at her recommendation. I was diagnosed in my early 50s with Stage 1 (I’m 63 now, too) and try not to live in fear of a recurrence. I am still clear, according to my annual mammos, but sweat bullets every year when I go in due to the family history (mom, aunts, cousins). I want to personally thank you for participating in the trial, which may someday save other people like me and my loved ones. I am delighted it is working for you so far, as I was in a trial for another medical issue and it did not go well, so I can only hope they gleaned good knowledge from my participation.
    I wish you many delightful days in a long and happy life!! Keep on keeping on and writing. Linda Haugsted

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    • Hi, Linda,
      Thanks for taking the time to write. When I was first diagnosed, my daughter was 5, so rather than shoot for goals, such as 5 or 10 years,etc., I set goals as seeing my daughter graduate from college, seeing her get married, etc. Thank really helped me, a lot. I had a great deal of “mammo anxiety” as well. If the tech took one too many pictures, I’d think it was because she saw something unusual! At the time, I didn’t think I had a family history, but now, I have 2 cousins and an aunt – all on my dad’s side. Even with that, I have normal genetic testing results. Have you had yours done?

      I hope you continue to be clear and healthy. It’s such a tightrope we walk, but what can we do? When I was diagnosed with stage 4 in 2009, a breast specialist I saw (who is very involved in research) told me to hang on because there were many drugs in the pipeline that look promising. Some of those drugs have been approved and are now commonly used.

      Take care,
      Deb

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  • Deb, you really are an inspiration. I had early-stage breast cancer and realize that I could become metastatic like so many people. I have a lot of down days, but you have encouraged me to really take one day at a time. Thank you, and I hope you live a much longer life.

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  • I too am on GTX-024 since January. I’m having ,what I believe, are some side affects from it. I’d really like to campare them with you. Since it’s a trial drug, there are not too many things posted on google.

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    • Hi, Westray,
      I’d love to talk to you about Enoboasarm. Please call me at 508-245-0868. The only thing is that I can’t talk right now (literally) because I have laryngitis from having a cold all week. Hopefully, by Monday I’ll have my voice back, so give me a call any day after 4. I look forward to hearing from you!
      Have a good weekend,
      Deb

      Like

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