Let’s Make a Deal

In what has become an early spring event, I am looking at my second bone tumor crisis. Just at the moment that I felt fabulous and had an energy level that I had not felt since before I was diagnosed with this sludge, I got nailed with intractable pain and disability from a tumor that has been in my sacrum since I was initially diagnosed with metastatic disease in August 2012.  I just couldn’t believe my luck.  Literally two days after telling my director that I couldn’t wait to dig in at last, I was felled with severe pain that truly came out of nowhere.

A routine PET/CT and one MRI later, it was revealed that the 2.7 cm tumor had grown to 3 cm. But the great news was that the primary tumor in my breast was smaller and nothing else was lighting up in my battered frame.  The site was biopsied and its makeup changed to a limited degree.  Where I was ER+/PR+, HER2- at initial diagnosis, this time I was PR-.

To deal with the pain and kill this thing, I am going through my second course of radiation. While radiation is no picnic, this time it hasn’t been so bad if you take the long view.

For one thing, the workflow in the radiation oncology unit has changed for the better.  The staff has been wonderfully supportive and professional–really outstanding!  I had to have a frame made to keep my legs in the right position, but that was not a big deal.  And while the reality of laying on a table while a total of 70 seconds of high dose radiation in six positions is beamed into my body still freaks me out, I’m tolerating it pretty well.

The first two days I had outrageous nausea and was drowned in fatigue (which caused me to miss the Black Sabbath concert, dammit!).  I am still in some pain that keeps me off my feet and the fatigue is like a cloud over my head, but I can detect mild improvement and hope to be pushing that damned boulder up the hill once again  in a few days.

So besides missing the concert it all seems to be moving along as planned.  Except for the email I received from the nurse practitioner on behalf of my physician.  Seems the doc wants to change up my medication since the tumor wasn’t responding to the Exemestane. She put before me a couple of choices.

door.1Behind Door Number One is the the choice of Exemestane + Affinitor. Yes, this little dandy of a drug is used to treat breast cancer (and other cancers), usually after other cancer medications have been tried without successful treatment. The more common side effects are bloody nose, chest pain, weight loss, cough, diarrhea, fever or chills, mouth sores, nausea, bleeding gums, extreme fatigue, and vomiting. Oral chemotherapy.  Fabulous!

door.2Behind Door Number Two is the choice of Exemestane + Faslodex. This is used to treat hormone receptive positive breast cancer in women who have gone through menopause and whose disease has spread after treatment with antiestrogen medication. This is given monthly via two injections into one’s gluteus maximus. Side effects include commonly reported side injection site pain, nausea, muscle, joint, and bone pain, headache, tiredness, hot flashes, vomiting, loss of appetite, weakness, cough, constipation, shortness of breath, and increased liver enzymes.  Sweet!



And there is always a Door Number Three. On first glance it doesn’t seem like much of a choice, but the lure of knitting fiber, wholesome milk, and adorable cartoon animals are the clear winners in this choice before me.  I pick this one!


Personally, I have some issues with the choices from the start.  Given that this tumor is now on its way to permanent destruction and everything else in my body has responded quite positively, I am quite content to wait until further scans to make one of these choices. After all, these two tumors have been there since the start and have always been active, even if they were stable.  I meet my new medical oncologist in a few days and will discuss it then. (My former oncologist has moved on to bigger and better things at Yale University, so this will make my fourth oncologist.)

First of all, I’m not crossing the line into chemotherapy–oral or no.  Psychologically I’m not there.  And, second, I already get one injection in my ass every month (Xgeva) and every three months another (Lupron). I’m not anxious to put my poor posterior up for more torture.

While personally this cancer experience has been pretty damned awful with regard to pain as the result of bone metastasis, in the grand scheme of things my cancer has been relatively well controlled.  The lymph nodes and tiny lung lesions were resolved shortly after starting Tamoxifen and have remained so.  I experience mischief in my axillary lymph nodes now and again (pain that comes and goes with no palpable nodes) and my primary tumor–though still intact–is much smaller.  Bottom line is that I’ve been able to hold steady with systemic hormonal therapy.  But chemotherapy?  That is the proverbial line in the sand.

When I have to make that choice, my desire to live out a full decade is drastically diminished (or at least I think so).  And even though I have to make all kinds of arrangements and contingency plans, I’ve predictably pushed it off.  I mean, I don’t feel like making funeral arrangements for myself.  But I suppose I have to face that all happening sooner rather than later; after all, people do it all of the time.  Oh, yeah, and probably goodbye career! And it is not that death is in any way imminent–it isn’t!–but once I use up that last line of hormonal defense there’s no going back.

Chemotherapy is the tipping point when I have to make a deal and choose not what I want to do in my life, but how far I am willing to go to have any life at all.


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26 Responses to Let’s Make a Deal

  1. dear Scorchy,

    I would have entered the fray yesterday but couldn’t get past the MOFO word. what ghastly choices to have to sift through. the way you wrote your thought process out in this post is so cogent, but the best part is that you’ve based it on what’s best for YOU, with the added attitude of flexibility for changes down the line if need be.. I and legions of others will be here to support you every step of the way. please know I send gargantuan hope, loads of warm and gentle hugs and…

    Love, Love, and more Love,

    Karen xoxo

    • Scorchy says:

      Karen, you are so kind. Yes, these choices we make are awful. All of ’em. Who knows what will be, eh? I know fear impacts many of my choices–whether it be medication’s side effects–but we’ll see where it all goes. I do not want to lose my toenails and consider that the better end of chemotherapy. But then I’m not there yet and that isn’t before me. Either way I know I have so much support-I can face it all. xoxo xoxo

  2. I am sorry that the tumour is causing so much pain out of nowhere. It’s a bitch to have to miss the concert. I hope the radiation kicks in quickly to quell the pain. I just wish the best for you.

  3. Those are not happy choices and I’m sorry you have to make any of them. Love, Lois

  4. bethgainer says:

    Oh, Scorchy! I’m so sorry about this crap. You are logically thinking out your choices. Whichever your choice, it is yours to make. I’m so sorry to hear about this. Sending you hugs. xoxo

  5. Katie says:

    This is all just so awful, and I can’t even imagine making any of these decisions. Then again, I suppose most people don’t think about it until they have to. I hope whatever route you decide to take that it all works out for the best.

  6. The Accidental Amazon says:

    Scorchy, like Harriet, I’ve been sitting here not quite knowing what to say, except a large, loud CRAP! What strikes me about this miserable news is how rationally you have parsed out your options right now. I’m sure this didn’t happen without a lot of cussing. Navigating these shoals has got to be mind-bending, but it makes sense to pick Door #3. Crap, though. Hate, hate, hate that you are having to contemplate giving up work. Crap cubed on that one. But the main thing is that you are not giving up on you. Massive love, my friend. Kathi

    • Scorchy says:

      It is craptastic for sure. We’ll see what happens on Monday when I meet my new MO. I;m okay with work now, but if I had to go through chemotherapy I don’t know how I’d be able to keep up. Fucking Cancer. xoxo

  7. Catherine says:

    Grrrr! I am so sorry for all this crap to deal with, and detest the lack of options. Have you heard of pacluoclib (sp?). Apparently it is having decent results though it is still in trial phase. my onc keeps trying to get me onto it.

  8. I have been sitting here with my fingers poised above the keys, and I don’t know what to write. Somehow , I would like to give you support in this whole mess, but how? I can only say that your emails touch my heart and I wish I could send you fairy dust or something to ” make it all better” like I did with my kids when they were little..

    Sorry you missed the concert, but on the bright side…try to remember how lucky you are to have BC , the good cancer. I still haven’t gotten past that one…sorry.

    I don’t know you but send my love and wish you strength and healing.

    • Scorchy says:

      I am so grateful, Harriet, to have the good cancer. It’s really true. Even if I didn’t have it, if I were to wish for one cancer it would have always been this one.

      xoxo xoxo

  9. dglassme says:

    First and foremost sorry about you having to miss the Black Sabbath concert, dammit! Secondly, sorry about having to make choices, and lastly eeeeGod those freggin tumor sizes. As always you are in my thoughts, and thinking about your mortality is mind blowing, not to mention exhausting. HUGS ~D

  10. rupertbu says:

    Hello young lady, the good news is that your #QR works! 🙂

  11. Knot Telling says:

    I respect you so much,Scorchy. I might understand a bit of what you’re feeling, having made the decision not to treat my bone mets at this time. What I respect in particular is your ability to decide what you want, put it into terms that doctors can understand, communicate it, and still remain open to change should that become necessary.

    About your decade… When I was diagnosed I was given two to three years. That was over ten years ago. Statistics don’t count for the individual and prognoses are just educated guesses.

    Love you, sweet one.

    • Scorchy says:

      It’s true, statistics don’t mean a thing in this game. And it’s hard to see the horizon when you’re enveloped in fog for the moment. Love you too, my knotty friend. xoxo

  12. hermyleen says:

    Hey Scorchy, I’m on aromasin& affinitor and I’ve just had radio done late last yr and I’m feeling the best I’ve been since my 2nd diagnosis last yr, so I hope it will go well for you too and that the radio will reduce your pain. I’m not saying it doesn’t come with lots of side effects but it’s tolerable I guess.

  13. Victoria says:

    Wonderful post, Scorchy. Having done chemo (and believe me it brought me to my knees) I can appreciate your feelings about it. I’m not sure I would do it again. I sure wouldn’t want to.

    I got a note yesterday from an old friend. He’s from the same part of the US as I am and he married a French lady many years ago. I remember meeting her just after they got married in the 1990’s. His note was to tell me that she had passed away (BC) and he wanted to know if I knew any decently priced funeral homes in Paris. The answer is that I don’t but I need to answer his note. I don’t know how much support he’s getting from his wife’s family or if he knows anyone here in the American community who could help. What I do know is that something about that note terrified me – just hit too close to my own fears that I will die here in my host country without my American family or friends….

    • Scorchy says:

      I wish you didn’t have to be without your American connections. And knowing that they think about you and love you doesn’t help the geography. I hope you have people around you to give you support and love. I know you have a world full of people who do! xoxo xoxo

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