The first time I heard the word “prognosis” as part of this little breast cancer adventure was back in July when I was diagnosed.  80% was the magic number.  I had an 80% chance of survival.  I remember saying, “Can’t it be 90%?  I don’t do Bs.”

A month later I saw my surgeon again and, as he was online pulling up my PET/CT scan results, I asked him just what that meant; would I survive for five years or permanently?  He looked up from the screen and said, with a twinkle in his eye, “Permanently.  You will have to die from something else.”  I appreciated his sense of humor.  And then the smile faded from his face.  “This isn’t good,” he said.  “It’s in the bone.”

Well, he didn’t talk about prognosis anymore.  I didn’t ask.  My former oncologist never mentioned it either.  I didn’t want to ask, to be honest.  I had read enough articles to know all about five year survival rates.  It was not unheard of to survive ten years, but it wasn’t common.  The first time someone actually gave me a prognosis–based on averages–was when I went for a second oncology opinion in September 2012.  I heard what the doctor said–three years–but he was quick to add that it could be longer.  I believe the longest survival rate that he knew of was twenty years.

I wasn’t fazed, you know.  The Death Star was in its boob orbit, outposts had been established, but I felt fine (save for TFK fatigue).  Then TFK, fickle bitch that it is, decided to stir up the pot and hand me a good tumor response by making the outposts in L4/S1 GROW!  I’ve not been without pain since and, as pain is wont to do, have been demoralized and fatigued as a result.

I saw my oncologist yesterday and asked about prognosis and his answer was 2.5 to 3 years.  He qualified the answer: I was having a good response to TFK and that was a good sign.  I’m not fatalistic by any means, but those numbers took on new meaning and they’ve had me in thought for the last 24 hours.

Because I’m such an over achiever, I just automatically assumed that I would be around for the next twenty years.  Me succumb to cancer in anything under a decade?  Bite me.  Anytime someone asked me I’d always spin it to meet my expectations: “I will probably be around for another ten to twenty years.”  “You won’t get rid of me, Boss.”  “I will outlive my cats.”

But this pain dance I’ve been performing throughout October and November has made me look at things in a more measured fashion.  Let me be clear: I’m not bemoaning my lot or having a self-indulgent pity party.  I’m serious.  The fact of the matter is that the average is about three years and every month and year after that will be, as I have termed it, celebratory gravy.  I need to start planning.

First there are the matter of fact things: wills, end of life decisions, care of my animal friends, etc.  If I didn’t plan this I would be a fool.  A control freak like me leaving important decisions like this to someone else?  [Insert laugh track here.]  Besides, if I do it now and beat the odds then it’s done, right?

Then there is the matter of working: I refuse to stop.  I’ll work with my employer and my physicians to come to some reconcilable arrangement.  I have not yet explored targeted radiation to address the pain from the lytic lesions, but perhaps that is an option that will help to make things a little easier for me.  Clearly a topic for discussion with my new oncologist later in December.

And, finally, there is life.  I sink a lot of money every month into retirement.  A LOT.  I am going to halve that number and throw it into easily liquidated savings.  And with that money I am going to do the things I’ve been putting off: that knitting trip to the UK, that vacation on Sannibel Island, visiting my friends around the country, and knitting my hands off (when I’m not writing).  Passport renewal here I come.

And my student loans? 

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23 Responses to Prognosis

  1. Let me know whenever you want to come to Cleveland! (and I’ll let you know the next time I come to New York)

  2. Renn says:

    A friend of mine was diagnosed with breast cancer 14 years ago while still in her mid 30s. It recurred twice, the last time in her spine. She continued to work and she spent her money freely: She took splendid vacations, enjoyed her life, and was uber-generous with her many friends. She turned 50 last year and only then realized: “Holy crap, I never saved for retirement — never thought I’d be here to need it.” She recently opened her first 401k.

    I just love her story and when I read this post, I just had to share.

    I wish for you many, many splendid vacations, and a retirement account in need of funds down the road. 🙂

  3. Well, if you don’t write your own obit, someone else will write one you won’t like.

    Two other thoughts – 2.5-3 yrs is the MEDIAN, not an average, not a tailor-made prognosis. It mean half the people with this diagnosis live less than that, and half live longer. I don’t know if that’s comforting or not, but I like the facts.

    Also, I have had very good pain-reducing results with targeted radiation therapy, twice since my diagnosis to my bones. Very good results, very tolerable treatment; nothing like the radiation they do to your chest.

    Happy Vacationing!

  4. Tracy says:

    Keep making the lemonade and when you come to the UK feel free to say hello. I’m in the middle of nowhere countryside but we have beautiful views, clean air and apple cider (probably not so good for the health but very good for the spirit).

  5. Scott MacKenzie says:

    I look forward to your visit in the First State. Let me know and I’ll take off work and sit in the sun at the beach — something I never do. Wouldn’t we all feel kinda foolish if the Mayans are right? I’m amazed you’re only cutting your retirement contributions in half! Fuck it. We can live on Ramen noodles, right?

  6. Acacia says:

    Madwoman here. Prognosis means nothing with a specific terminus. And even less without our agency. Potential, possibilities, options are the things that keep us moving. Life is too fluid and messy and brilliant. Of course, the adults make a plan, build an armature in which to work (I have my own bound in very serious leather,) but leave the actuary tables to the bean counters.

    For myself, (again madness still talking), I’m to learn to make wind-up automata, which should take me at least two to three years longer than than the tables say (basic horology isn’t easy). And maybe a whiskey tasting tour of Scotland.

    As for the student loans? Dr Warwick appreciates the degree and the education, but I got holes in my brain that whistle when I even think about them. It’s a nice tune, actually.

  7. I love how you always cut to the chase using wit and humor. Another amazing post. Thank you.

  8. Susan says:

    Scorchy you are amazing. I firmly believe your attitude and approach has so much to do with your ability to live on your terms. I also agree with your logic about planning and especially with the idea of putting less in retirement and making sure you do all of the fun things that you have always wanted to do. It is about quality of life. I love your sense of humor and your zest for life is awesome. Enjoy the moments! XoXoXo-Susan

  9. planetann says:

    Let me know if you ever want company on any adventures! I’ll carry your baggage so that your hands can remain free to knit non-stop!

  10. If you believe is Metastatic Breast Cancer statistics I have been dead for two years … the hell I am. There are far too many people to annoy in this world for me to leave them without my influence!

    If it is still ‘only’ in your bones you have a damned good chance of being around for quite a few years. After all there are lies, damned lies and then there are statistics.

    If you are coming to the UK we will have to meet. I have a spare room. House is nothing to write home about, but I live on the south coast in the New Forest (founded by William the Conqueror in 1079).

    HA! to cancer.

  11. @rupertbu says:

    My Mother in 1977 was given three months, then in 1998 she had second mastectomy, with permanent survival until 2003, when a domestic accident cut off her flow of booze and cigarettes!

  12. Caroline says:

    Never put off today anything that can be fun. Personally if I was in your shoes, I would start planning a vacation every two to three months. At some point when I was in treatment for BC, I came up with every bit of bravery I had and asked my oncologist about my prognosis. I had never asked that before – even though it was cancer number two – but I figured I finally wanted/needed to know.

    Personally though I ignore all the numbers. I have a friend who is a stage IV ovarian person (I detest the word survivor) who is 30+ years out. Have you read Jill’s blog ‘Dancing with Cancer, living with Mets’ She is more than 10 years out at stage IV. But none of that is any reason not to vacation frequently.

    • Scorchy says:

      This is why I’m not sitting here writing my obituary, but doing some common sense planning. It affords me a bit of control over a situation that is so unknown. I’m trying to make lemonade where I can.

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