All I Need is the Air I Can’t Breathe

Posted on: September 21st, 2019 by
8

When we are diagnosed with cancer, we are in so much turmoil that making life-saving decisions is so very difficult. All of a sudden, we are inundated with statistics of which treatment(s) are most likely to save our lives. Not to mention the maelstrom that a cancer diagnosis causes in our lives..

So, with a shaky leap of even shakier faith, we cast the dice, hoping our medical decisions turn out in our favor.

***

Dice

“You are lucky,” says my cheerful radiation oncologist. “Radiation is safe. It will not harm your heart because the cancer is in your right breast.” I love her for her sunny disposition and cheerfulness. It is the only time I feel good during this shitty time of diagnosis. And I am reassured that the treatment protocol I chose based on the medical numbers will help destroy the cancer once and for all.

Several weeks earlier, my surgeon gave me a choice. Either I could have a mastectomy with no radiation or a breast-sparing lumpectomy with radiation. He spoke highly of the latter choice, saying that a lumpectomy with radiation had the same effects on killing cancer as a mastectomy.

I chose to keep my breast and receive radiation.

When I finished chemotherapy, there was thankfully no bell to celebrate the end of this treatment. But when I finished radiation, the bubbly radiation oncologist and her staff gave me a signed certificate and hearty congratulations and ushered me out the door of the radiation area.

This was in 2001. And I’ve been so fortunate thus far. As far as I know, I’m cancer-free.

But 2019 has reminded me that one is never, ever done with cancer.

I had been having difficulty breathing toward the beginning of the year and went to a new-to-me primary care physician. And he had the balls to tell me what other doctors denied: that radiation treatment permanently damaged my lungs. “The lungs are right behind the breast,” he said before I went blank. Stunned, I told him, “Well, isn’t that nice. Cancer is the gift that keeps on giving.” He smiled painfully.

Unlike my previous primary care physician who was dismissive — telling me my chemobrain was really age-related and bone density problems were due to menopause (chemo-induced), this new doctor gave me a gift:

The Truth.

And he gave me another special gift: a prompt referral to a pulmonologist, who concurred with the primary care physician. After a series of brutal tests that left me gasping for breath, I was diagnosed with asthma and restrictive lung disease. My pulmonologist told me that my condition was “out of control” and, while my lung condition was permanent, there were things I could do to alleviate the symptoms and gain control over my breathing. I needed to lose weight to take the pressure off my lungs.I also had to take a strong daily powder inhaler and use a “rescue inhaler” as needed.

I’m an overachiever. Give me a finite medical goal (or any goal for that matter), and I will do my best to achieve it. The next time I saw my pulmonologist, I had lost 10 pounds, thanks to exercise and eating better. My breathing was markedly improved. My doctor was happy and reiterated how much he wanted me to have a quality of life. He said words that were gold to me: he didn’t need to see me so soon. I needed a six-month appointment.

My appointment is coming up, and I’m another 10 pounds lighter. While my breathing continues to be better than before I was treated for my condition, I still have those off days — when there’s a tightness in my chest or I’m short-winded.

Like many people, I took breathing for granted. Breathing is so underrated.

I am now content to be gradually improving and feeling stronger. I am grateful for a better quality of life. And I’m super grateful that I had some power to alleviate the symptoms of my condition.

I am beyond proud of myself and my progress.

I’m hell-bent on losing the next 10 pounds.

I’m tough.

My health is my new religion.

I’m my own opus.

But I’m still pissed off.

At my cheerful radiation oncologist who touted radiation as “safe” and who intimated to me that I was “done” with cancer. My former primary care physician who minimized my concerns about the symptoms of cancer treatment. My surgeon who pressured me to choose a treatment that, had I done more research, I might not have chosen. Then again, when a person is newly diagnosed with cancer, he or she is so desperate to kill cancer cells, it is difficult to say, “Wait, doc, I need to research this further.”

I’m angry at myself for not doing research before undergoing treatment and trusting a doctor’s word as gold.

But I’m most angry at cancer. Because it’s all cancer’s fault.


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8 Responses to All I Need is the Air I Can’t Breathe

  1. Eileen had this to say about that:

    Beth, I had the same exact treatment protocol and heard the same lines. I know my doctors were sincere, believing as they do. We patients know the truths because we live and experience them daily.

    Yes, if I’d known, I would have pushed for something I’d asked for initially and not just accepted the MD response. But here I am. Here we are… I’ve often wondered why young mothers with children die of metastatic cancer while I’m still here. I said this aloud to my son one time and he responded: “You got to see both of your children married and got to be a grandmother.” Yes, it is what it is, and I wish it would have been different, but somehow I’m all right even if “it” is not all right.

    Not to discount any of it, I wish it had been different for you too. It sucks to sacrifice quality of life when our objective is just to keep living. Who knew this would be permanent? Who knew cancer, long gone, would leave its “gifts” forever?

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

      Eileen, thank you for your poignant and insightful comment. I also feel survivor’s guilt. Yet I’m so happy to be alive.

      The doctors gave me these lines that such-and-such is safe, and now that I think about it, perhaps that’s all they knew at the time, and they were being honest based on what they knew.

      However, as you know, we are human beings, not pieces of data, and we must live with the consequences of cancer aftermath. Despite my quality of life being affected, I’m grateful that I have some control over my medical health and that I’m alive. All we can ever do is maintain our health as best as we can.

      Thank you again for your thoughtful response.

  2. Kathi had this to say about that:

    Oh, Beth…honest to goodness. I recently figured out that all the calcium that showed up in the right coronary artery in a recent scan is in the radiation field for when I had treatment to my right breast. And further discovered that radiation also can cause late-effect coronary artery disease. Fortunately, my score was very low & now worrisome, but still…

    We get lied to so much. I had a LOT of pulmonary problems with radiation in the first year or two after it. They are under control now. As a PT, I know a lot about pulmonary issues & help people deal with them. One tip: get yourself a spacer for your rescuer inhaler. It can be a portable one, but your rescue inhaler medicine will be much more effective with a spacer, which is something that even some pulmonologists don’t tell you about. You can make one from a plastic water bottle, or you can buy one, or ask your pulm doc if they have some at the office you can have. Here’s a link & good luck! <3 <3 https://www.drugs.com/cg/how-to-use-a-metered-dose-inhaler-and-a-spacer.html

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

      Kathi,

      I’m so sorry that the radiation caused you harm. A cancer diagnosis sucks on so many levels. I’m hoping and praying that your coronary artery and the rest of you stay healthy.

      Thank you so much for the link and helpful information. I’m bookmarking the site, and it will be useful to me. You are right about doctors don’t always tell patients about the spacer. As I said in my Facebook comment, a respiratory therapist is the one who told me about it and gave me one.

  3. Claudia Schmidt had this to say about that:

    Oh Beth, I’m so sorry, this is awful. It’s just so unfair that the very thing that is supposed to be helping can cause so many other long term effects. I recently went off Tamoxifen at 8 1/2 years instead of the 10 that my oncologist recommended. I had cataracts at 61 years old, which just seemed weird as I’d never had any indication prior to this, and when I read through the side effects of Tamoxifen, on of them was cataracts so I just decided to stop taking it. The long term effects of all these treatments are very frightening and as you note, NO ONE TELLS US ABOUT THEM. It surely is the gift that keeps giving. There’s not much I can say other than that I’m sorry you’re going through this and that I hope you are able to manage through it and still live the full life you deserve.

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

      Thank you, Claudia. We both deserve to live our full lives to the best of our abilities. I’m so sorry about your having cataracts. I had no idea myself that cataracts were a possible side effect of Tamoxifen. I hope you are living the best life possible. It’s all we can do. Xo

  4. Nancy L. Stordahl had this to say about that:

    Hi Beth,

    Well that sure sucks. I’m sorry you’ve been dealing with this additional collateral damage. Breathing is very definitely underrated! I’m glad you have a plan and that you are feeling stronger and healthier.

    As you know, I had an implant rupture and am now grappling with what type of surgery to do. My decision won’t be entirely based on what I “want” to do as a couple other issues have popped up. Anyway, taking care of our health sure gets complicated after hearing those words, you have cancer. And it is never over, that is for sure.

    And yes, there were a few things I wasn’t told at the beginning too, which makes me angry sometimes too.

    Great to read a blog post. I have missed them!

    Sending loads of love, Beth.

    Take care of yourself.

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

      Hi Nancy,

      I know you had an implant rupture, and that totally sucks, too. Have you noticed that, with cancer, the complications just never stop coming?

      While going through this “little” lung debacle, I’ve gained some perspective: I’m alive and have a goal to work for, and that has lended me an attitude of acceptance.

      Well, not completely, but I’m trying.

      Hope all goes well with whatever your decisions are.

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