Radiation Blues

Posted on: June 21st, 2018 by
6

Flowers

When I finished radiation treatments for breast cancer 17 years ago, I received a beautiful certificate stating that I “graduated” from radiation and that I crossed that finish line. The staff signatures on my certificate and hugs from my radiation oncologist and nurses were amazing. I actually felt like a survivor and my spirits were buoyed up.

Now I realize I never really graduated at all. Unbeknownst to me, I was left back.

I’m currently recovering from pneumonia, the second bout I’ve had in three years. Whenever I get sick, I never get the common cold. Never. I get really, really sick, always involving my lungs in some way: bronchitis, bronchial asthma, and now, pneumonia. I can never get better on my own, but need a doctor’s assistance to hop aboard the wellness train.

My new primary care physician could not understand why, when I went to the ER the day before, the lung X-ray showed I had COPD. In addition, my oxygen level was lower than ideal. In the ER, I was peppered with questions about whether I had ever smoked. I have never smoked, so you can imagine my shock regarding the X-ray.

During my post ER follow-up appointment, my new doctor looked over my history and asked me if I ever received radiation as part of breast cancer treatment. Then he told me — which pains me as I write this — that he believes my lungs were somewhat damaged by the radiation treatments.

Fuck you, cancer.

***
I am one of the lucky ones, I know. I am NED thus far. So many patients, especially those with metastatic cancer, have it worse than me and are more ill than me.

But right now, I’m understandably pissed off about my situation.

During my 17 years of survivorship, I made the best out of my life: I fulfilled my dreams of becoming a mother, artist, writer, and teacher. I’ve had a joyous life in so many ways — filled with love, laughter, friends, and a daughter who is my everything.

Since my last post on exercise, I had even gotten myself into a nice exercise routine, where I walk for 60 to 90 minutes intensely several days a week; exercise makes me feel good and strong.

But I’m anything but strong now. The steroid and antibiotic I received from my visit to the ER were ineffective, so I’m now on a stronger steroid and antibiotic, which seem to be working slowly but surely. Meanwhile, I had to cancel our trip to visit family in New York last week because I’m not well right now. I’ve canceled playdates with my daughter’s friends. I’ve canceled get-togethers with my friends.

I’ve spent 17 years trying to develop confidence in my body. And if, dear readers, you’ve been reading my blog steadily, you know I do my best to take care of myself physically and emotionally.

I may be NED, but having had cancer treatment makes good continued health precarious.

My new doctor wants to get to the root of the problem to figure out why I get so sick. No other doctor has ever admitted to me that having had breast cancer had caused collateral damage. When I am better, he recommends an X-ray of my lungs, as well as a follow-up with a pulmonologist.

Even if nothing is found, which is what I’m hoping for, I have to be honest with myself: the doctor’s intuition might be right — radiation might have damaged my lungs.

I thought chemobrain, PTSD, and osteopenia from this experience would be all that I would have to deal with. Wrong, I was. Naive, I was.

I am angry.

***

Diagnosis and discussing suggested treatment protocols are a murky time. There is so much information that patients have to process and sometimes a plethora of treatment options. And, of course, we patients are facing imminent mortality head-on.

I know that medicine has advanced from 17 years ago, How could it not? But when my radiation oncologist smilingly reassured me that the radiation part of my treatment was safe as all-get-out, I believed her.

When my breast-conservationist surgeon said lumpectomy plus radiation is as good as a deterrent for re-occurrence as a mastectomy, I listened. I initially chose to make the best treatment decision possible for me. I wanted to keep my breast at that time of diagnosis — a time when so much information is given to a befuddled, confused, frightened patient, that one’s head spins.

If I had a crystal ball back then, I would’ve skipped the radiation and gone straight for the bilateral mastectomy. Not a walk in the park, either, but I’m afflicted with the radiation blues.

Disclaimer: If you are a doctor reading this, I’m not recommending that patients simply throw your medical expertise to the wind. Nor am I questioning a particular treatment protocol you are recommending to your patients. And if you are a patient, only you can make the best decisions for your body. My wishing I had chosen a different treatment protocol is an individual desire of mine, but it’s not the right decision for everyone. And, who knows, maybe in time I will realize that I chose the right treatment after all.

So here I am, recovering from pneumonia and am hoping I can hit the gym in a few weeks.

I’m just bitter about my body right now.

Its continual betrayal makes me understand that I’m still reaping the effects of cancer treatments.

In the end, I do not blame my doctors or me for our decision to initially go with a lumpectomy plus radiation. I made what I thought was an educated decision, weighing what treatment would give me the best long-term outlook. The priority was to prevent a recurrence and/or metastasis.

When I get well, I will be seeing a pulmonologist.

In the meantime, I am still grateful to be alive, and that I’m in good overall health. My doctors worked hard to save my life, and they have been so loving and kind. Seventeen years ago, I made the best treatment decision I could — and I must have the courage to live with the consequences of that, without blaming the medical profession or myself for going through with a recommended treatment.

Have you had any kind of damage from cancer treatment? If so, please feel free to share your story/stories.


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6 Responses to Radiation Blues

  1. Maureen Kenny had this to say about that:

    Sorry to read this, Beth. I wrote this after my RT ended more than two years ago. The potential side effects are indeed scary: https://iamtheoneineight.wordpress.com/2016/04/15/side-effects-you-really-dont-want-to-think-about-radiotherapy-part-3/. I hope you recover well. Glad you’re NED 17 years on.

    • Beth L. Gainer had this to say about that:

      Thank you for your kind words, Maureen. I will be checking out your post and, you’re right, the side effects are scary.

  2. Nancy Stordahl had this to say about that:

    Hi Beth,
    I’m sorry to read about your bout with pneumonia and that you had to cancel your trip. And yes, the collateral damage… Sometimes it just never seems to end. I don’t blame you for feeling angry right now. I mean, after 17 years, enough, right? But like you said, being NED and being overall healthy is what matters most. But this other stuff is still hard! Anyway, I’m glad you will be seeing a pulmonologist when you’re feeling better. Sounds like a good idea. One more specialist, right? In the mean time, take care of yourself. Hope you feel better soon. Thanks for writing about this. Interesting how we both wrote about RT this week. xo

    • Beth L. Gainer had this to say about that:

      Nancy,

      Thank you, as always, for being there and your support. I’m trying to accept what can’t be changed, which is so contrary to my nature! But I’m trying. Yep, no matter what, it is so difficult to deal with cancer fallout.

      I started writing this post last week, and it is interesting how we both focused on radiation treatment. Great minds think alike, huh? :)

  3. Helen had this to say about that:

    Radiation for uterine cancer has left my bowels amess and I am also paralysed .. a rare side effect of radiation call Radiation induced lumbar plexopathy … for those who had radiation for breat cancer they can get Bracheal plexopathy that causes the arm to become weak and maybe paralysed … the cancer never came back but I am paying a very high price for acure

    • Beth L. Gainer had this to say about that:

      Helen,

      I’m so sorry for all the collateral damage you endured as a result of radiation treatment for uterine cancer. Being a cancer patient is tough; one has to weigh the pros and cons of various treatments. It’s a hard call.

      I had not heard of radiation induced lumbar plexopathy. Thank you for letting me know about this condition. You’ve been through so much. Hugs.

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