Remission

The Catch-22 of having metastatic breast cancer is this: when you’re caught in a period of crisis all you hope for is that your scans will improve, the pain will lessen or go away, your energy will return, and that you will at the very least be stable: i.e., no progression.  But the rub is that when you are not in a period of crisis, your scans are stable or better, you have energy, and you’re not in pain, you wonder when the next period of crisis will be and if it will be the last.

One thing I hadn’t considered, however, is that my oncologist would tell me that if my PET/CT isn’t lighting up she will likely pronounce me in remission. I had always attached remission to something like leukemia, only because that is the context in which I had heard the term. Someone is gravely ill, experiences hellish treatment, and then the cancer is gone–remission.  I never thought about that for myself. And, frankly, no one ever mentioned it–doctors, advocates, fellow patients.

All things considered, I suppose it is likely since tumors I had in L4 and the sacrum have responded really well to radiation to where there is little to no activity in these areas. The lung lesions–which were tiny to begin with–were gone within a few months of taking Tamoxifen. Tumor markers are down considerably. I still have my primary breast tumor that is smaller and with less uptake of the radioactive tracer (my physician talked about it being metabolically stable).  Of course, it’s only remission if I continue monthly visits with my oncologist, take Exemestane daily, Xgeva monthly, and have quarterly shorts of Lupron and scans to evaluate the efficacy of it all.

When I look back over the last 20 months or so, the entire period was one of crisis.  I can divide it between the experiences of Tumor I and Tumor II. All in all I had lived through twenty months–give or take–of craptastic glory. Other folks may have had it much worse or much better, but the only thing that mattered at that time was my own private Idaho. All of it was something that I never experienced before and it took a long, long time to heal. Gosh, I still needed help getting meds and running short errands up until about three weeks ago.

Two weeks ago I was able to work for four full days in a row; I had not been able to do that since April 2013. After the workday I could do little more than walk home, prepare dinner for me and the felines, and lounge. But I had worked  full days. I cannot begin to tell you the emotions of satisfaction, pride, and self-worth that I felt when that week ended. A week ago Sunday I joined my friends for brunch to watch the World Cup. As I left the house I was struck by the fact that I had no pain and walked to the subway entrance like I had never been ill. With little effort I descended the stairs and then caught myself smiling as I grabbed a seat and traveled in the subway to socialize for the the first time in a year. I walked the two flights out of the subway at 23rd street with ease and smiled as I walked to 22nd and down to 6th. I savored every step I took. Each one was a personal victory. Brunch was spectacular! I so enjoy the company of my friends Tammy, Lori, Mike, and Joanne. We talked and laughed and cheered with the rest of the restaurant as the game progressed and Netherlands–our team of choice–won the game. I cherished every moment, at one point just sitting back and watching my friends talk and laugh. Would that I could have put but some of that energy into a jar to save it. I savored every step home and after I arrived, I slept for four hours.

Capture
But you know, as much as I embrace the present state of affairs and every moment, I am also aware very aware that I am walking on an ice sheet. To say that I feel considerably better seems like an understatement, but I continue to navigate painful episodes. Once I stand it takes about four steps for me to walk without effort.  I still tire easily and this last round of radiation left some residual damage. Some of the nerves that are associated with my bladder have been damaged. And there is also other associated nerve damage that results in a sensation of both numbness and burning pain in my right buttock. That last symptom immediately had my pain specialist thinking shingles, but that is not the case. It is believed that the nerves will likely regenerate, but only time will tell.

When I first started blogging, I recall thinking about what was happening to me and at one point I said to myself “I am dying.” I knew I wasn’t in a critical state of organ failure or anything like that so it wasn’t like the lights were about to go out. Rather, it was the realization that I had been rather newly diagnosed with metastasis and had no clue what was going to happen as time moved forward. All I had was a diagnosis and a chart showing the mean survival rates of women with metastatic breast cancer. Fast forward 17 months and the load on my shoulders doesn’t feel quite so heavy and my oncologist is using a word like “remission,” but I’m not off the ice just yet.

My therapy is working exceptionally well, but were I to stop the routine I would eventually be on some pretty thin ice. Indeed, for all I know the cells in my primary tumor could decide it’s time to party and my present therapy would no longer be effective. It could change characteristics and become aggressive and fast growing. The ice beneath my feet could become so thin that I break through and succumb to the disease.

We never know what life is going to throw at us. The only way for me to deal with this moving forward is to let the physicians worry about the disease. For me, I want to savor the moments of real value to me: time with friends, my mother, my sister, and my feline friends. I need to be thankful that I can resume my career, for there were days when I wondered if I would ever be able to return to work again. I want to replace the palpable fear with which I lived every day for months with meditation and intellectual fulfillment. And I want to refine and hone my knitting skills for the simple reason that it makes me happy.

I don’t know how long this remission will last, but I intend to live a life of real joy, compassion, and personal fulfillment while it does. Within that weird Catch-22 world of metastatic breast cancer, I’m carving out a space for myself. It’s going to be a really cool happy place. And I am going to share it with you.

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40 Responses to Remission

  1. Susan says:

    Oh Scorchy…this is great news! I just want to do the happy dance! xoxo-Susan

  2. SherriYZ says:

    Scorchy – this post made my heart smile and fill with joy. Massive hugs for you.

  3. Melanie Guthrie says:

    Hi Scorchy, I think I saw this on the MBC blog. I share so many of the same feelings. I also have MBC and have learned in the 3 years of having it…to live my life…and take “cancer-free” periods. I am involved with my art and friends, etc, etc…Sometimes I have to enter Cancer World and deal with it…otherwise I take my medicines and try to live normally…Melanie

    • Scorchy says:

      You know, I was so “early” into this thing that when people would talk about “cancer free” periods or taking a break I really didn’t understand what it all meant.But with some distance and perspective, I get it it now. I had to advocate and fight for awhile, but now I just want to take a break. I hope it lasts a long time. At the same time there is that survivor’s guilt. I want all of my sister to be well. All of them.

    • Scorchy says:

      It’s a challenge. Eileen (Woman in the Hat) just wrote a HuffPo essay on the difficulties of leaving illness behind you and step into the land of wellness, or however long. I am finding this very difficult. Thursday’s PET/GT will confirm if I can actually be in remission. xoxoxo

  4. Ann says:

    Aww, Scorchy, I just couldn’t be happier for you. Both for the remission itself and for moving through the “I am dying” phase into being able to feel like you’re living again.

  5. Catherine says:

    I’m sending you one big giant hug in my mind. And want you to know I am so glad you feel well. To feel well is worth almost everything. Enjoy it, Scorchy. I know about the ice – far too much know about it . . . but am thrilled you are feeling good today.

  6. nancyspoint says:

    Hi Scorchy,
    I am so pleased to read this post. I know you’re not off that thin ice yet, but you are ‘skating around on it’ quite beautifully and with your own unique form and confidence. Wishing you lots more joy. Much love to you.

  7. helensamia says:

    That is such good news… I am so glad you have regained a quality of life that brings you happiness ❤️❤️

  8. oh, Scorchy – I am so happy for you! I love that even though you mentioned the thin ice thing, what shines through is your determination to savor every drop of the sweetness of life; I can hear the lilt of happiness in your voice – and that’s what makes me so thrilled for you. love you. Karen xoxo

    • Scorchy says:

      Karen, I love to hear from you. It’s funny, I am still as cynical and snarky, but I feel as if I added another dimension to myself. You cannot go through this and not be so impressed. Believe me, I am no Polly Anna. I’m just thrilled that I can lay here on my couch and know that I’m going to work tomorrow. Normal stuff. I will email you soon. – Scorch

  9. What a great post, Scorchy, and one that I was so happy to read. Enjoy the wonderful space you’re in, which is all exists today and all that matters right now. So happy for you!

  10. I am so glad for you. Carpe diem! Love, Lois

  11. Awesome! Such great news! Cheers to you!

  12. tw says:

    If there was a wordpress ‘love’ button this post would push it! I’m so pleased for you Scorchy after all you’ve endured, I hope the remission is long-lasting and joyful. Your philosophy is admirable and something we can all aspire to 🙂

  13. Joanne says:

    I’m very happy for you! I’m not leaping but I did bring my granddaughter rock climbing. :)…lol, I didn’t do it but I had the strength this year to work the pulleys for her…counts right? Lol

  14. The Accidental Amazon says:

    Scorchy, I can’t tell how moved I am to hear this incredible news. I’m always holding my breath for my BC sisters with mets, and this feels like being allowed — next scans notwithstanding — to let myself exhale. Every bit, every moment of personhood we get to snatch back from this stinking disease is a cause celebre, and I so revel with you in your being able to go to work & hang out with friends ‘like a normal person.’ Fingers crossed that those scans don’t disappoint us. Love you to bits & cheering madly. xoxo, Kathi

  15. maesprose says:

    This is amazing news considering the dark days you endured just months ago. Enjoy!

  16. Well that seems like a darn good thing!
    I have a friend who went through this same crappy journey (although I think your path has been a bit uglier), and her husband said that her new found lease on life was going to kill him. With every ounce of energy that she gain after all of her treatments (they called them mistreatments) she used to do “something” or go somewhere. Her husband just wanted to take a nap every now and then. I pray that you continue to become so energized that you’ll feel normal and tired like the rest of us 😉
    God bless you Scorchy.
    …I can’t believe I just used the winking sideways punctuation.

  17. notself says:

    Your good news has made my day, week, month, year. I am so happy for you to be free from pain and have energy back.

  18. rupertbu says:

    So when are you going to invite me out for a drink then? 😉

  19. Bean says:

    This is amazing news! Xoxo

  20. Chandra says:

    Such good news. Enjoy all your dances in the here and now.

    • Scorchy says:

      Chandra, thank you so much. Mind you, I wish I could leap like this woman in the image. I’ll just wave my arms a lot! Thank you so much for taking the time to comment. xoxo

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