Progression

When I ended the call I stared at the screen looking for an app that I could consult for answers.  But the reality?   There was no app.

I had just spoken with my oncologist and learned that Tamoxifen, the drug that had served me well for nine months, had stabbed me in the back.  Little fucker.  The cancer had progressed.  The PET/CT from the previous day showed that there was more uptake in the right breast tumor (though it had stayed the same size), something in the left breast looked suspicious, and there were some new spots in the sacrum.  The lesion in L4 had enlarged as well.  But I knew that part.  I could feel it in the debilitating back pain that has kept me home for the entire month of May.  The scan just confirmed what I had long suspected.

However, it wasn’t all disappointing news.  After all, the lung lesions didn’t show up and there was nothing lighting up the lymph nodes.

So where do I go from here?  In some ways, I wonder if I’ve fully wrapped my head around my diagnosis.  Hey, Tamoxifen was offering consistently good news and it was very easy to be lulled into a safe little zone of denial.  I knew there would be a progression as menopause and Tamoxifen met on the battlefield.  I just hoped that I would get one full year out of it.  And it turns out that I’m nowhere near menopause, so Tamoxifen sold me out.  I wonder what it was for?  Cigarettes?  Some extra scratch for entertainment in the seedier sections of the city?  Or maybe it just wanted to skip town for new horizons.

I took that pill every day at 6:00 pm for 286 days.  It inspired the most consistently popular post “Ten Things to Do with a Bottle of Tamoxifen.”  However, perhaps I should modify the title a tad as I have the addition of one more idea.  “Ten Eleven Things to Do with A Bottle of Tamoxifen.”‘

Flush 'Em!  How saweeet it is.

Yes.  This is the very best thing to do with a bottle of Tamoxifen.  Amirite?

So what’s next?  Induced menopause with a shot of Lupron every three months and a Femara pill every day until whenever.  I’ll get my shot of Xgeva every month.  The tiny calcification of the breast will be monitored closely.   And, finally, a consultation with a radiation oncologist to discuss the possibilities of targeted radiation to L4 to both relieve pain and to end the life of persistent cancer cells that are making my life miserable.  Between the enlargement of the lesion in L4 and the pain caused by the spondylosis, it’s enough to make me eat glass.

I have been out of the office since May 1.  June isn’t looking any better.  I can’t begin to tell you how demoralizing this is.

As I began to digest this latest news I wondered if I’d make it to 55.  Would I be one of the many women and men to die in two to three years?  I was hoping for ten, frankly.  After all, technically speaking one of those years is almost behind me.  I was diagnosed in July 2012–that’s less than one full month away.  I don’t care who you are, you know you’ve thought of this.  And I think of this a lot.

But, as much as I ponder it from time to time, I don’t dwell on this stuff.  It results in nothing of merit.  Nothing.  You can wind yourself pretty tight thinking of every bad scenario out there.  But what good will it do?  No, you must live in the present, in the moment.  Enjoy it, press through the pain as much as is possible, and look forward to good things.  For me that is going back to the office, knitting, going to museums, and being with my friends, my felines, and my family.  You don’t have to go skydiving or the cruise of a lifetime to enjoy your life.  Hell, I can have fun and stir up trouble just sitting on my couch.

Still, it isn’t easy navigating this thing.  It’s like driving on the New Jersey Turnpike: one traffic jam after the other, an unofficial speed limit of 95, and construction.  Always effing construction!   You just have to get through the jam so you can enjoy the ride and not worry about when the next construction jam will loom ahead.  I’ll just stay in the right hand lane, take my time, and enjoy my ride.  I have no plans to exit just yet.

This entry was posted in My Stage IV Life, Stage IV Musings and tagged , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

94 Responses to Progression

  1. I am so sorry to hear this news. Cancer really sucks! Keep your sense of humor and fight on!

  2. Dennis says:

    Yet another angle being developed to fight advanced breast cancer. May be of some interest.

    “Breast cancer clinical trial looks at targeting cancer stem cells: Researchers believe killing stem cells is key to improving cancer treatment”
    http://www.uofmhealth.org/news/archive/201306/breast-cancer-clinical-trial-looks-targeting-cancer-stem

    “Mice treated with reparixin or the combination of reparixin and chemotherapy had dramatically fewer cancer stem cells than those treated with chemotherapy alone. In addition, reparixin-treated mice developed significantly fewer metastases than mice treated with chemotherapy alone.

    The study is sponsored by Dompé S.p.A. For more information about this trial, “Phase Ib pilot study to evaluate reparixin in combination with chemotherapy with weekly paclitaxel in patients with HER-2 negative metastatic breast cancer (MBC),” call the U-M Cancer AnswerLine at 800-865-1125.” https://umclinicalstudies.org/HUM00052808

  3. Mary says:

    Sorry to hear this news. One more way that cancer sucks. I have my solution to the hot flashes, drug induced or not… Fans with remote controls! Doesn’t solve the problem but it is a little bit of a solution. Of course none of my fans had remotes, but they can be bought ( mine via Amazon).

    Thinking of you and hoping you are doing as well as you can.

    Mary

  4. Reblogged this on chemoforeveryone and commented:
    Love this blog!

  5. Fuck cancer. Fuck fucking cancer. That said, I think we need to rent a bus. We need to rent a bus, so we can have somebody else drive while we drink and dance while stuck in fucking road construction on the Kicking Cancer’s Ass Turnpike. With the Clash’s “London Calling” turned up to 11 …

  6. keithw says:

    Sorry to hear about the progression. Everyday you are around, relatively comfortable and feel like you are living as you should, is a kind of victory I think. I am hoping you have a helluva lot more victories than defeats.

    You got a lot of folks thinking about you, and a lot who owe you for shining a light in a dark place that scares the hell out of me personally. Wish none of us, those who have it, or those who are bound to it because they love someone with it, were here. But I am thankful as hell that you started this blog. Your “ramblings”, your point of view and your voice in your writing mean a lot.

  7. Dennis says:

    I’m new to your blog. Sorry to hear about the progression. Hopefully the new treatment will take care of business. Thought I’d send on this new option in the news. Good thoughts from here.

    P.S. – I’m a fellow breast cancer survivor too.

    Osteoporosis Drug Stops Growth of Breast Cancer Cells, Even in Resistant Tumors, Study Suggests
    http://www.sciencedaily.com/releases/2013/06/130615152341.htm

    “We discovered that the estrogen receptor is still a good target, even after it resistance to tamoxifen has developed.”

  8. hermyleen says:

    Just read this post, I think I missed this, so sorry to hear about your progression. I hate construction! It comes around sometimes with no warning. You sound like you’re still in good spirits. Tamoxifen was my friend but Femara was not my friend at all I hope they are better to you.

  9. I’m sorry you had this news. I’m thinking about you. Love, Lois

  10. Lori says:

    How the hell did I miss this??? Damn it!!!! How about if we BOTH send our cancer on a 3-hour tour. Nothing EVERY comes back from those! For what it’s worth, the damn little pills seem to be f-ing with me as well…marker jumped up by 25% this moth. One month isn’t a trend…so we’ll know more in June.

    For what it’s worth, Lupron hasn’t been as bad as I feared…but I highly recommend peppermint oil on the back of the neck for the hot flashes. Few drops cools me down in a minute or two.

    Love ya!!

    • Scorchy says:

      That’s a good idea. Must be part of a global Tamoxifen rebellion. I wouldn’t put it past the little fuckers. I hope they are not revolting on you too. Keep me posted, love.

      Thanks for the peppermint oil tip. I will buy some ASAP. Hopefully it won’t be so bad.

  11. Boszmeg!! So sorry to hear this news. I hope you see a return to steadiness with the induced menopause, and the radiation cuts back that L4 lesion to bring you out of the physical pain. ~Catherine

  12. Roz warren says:

    Well fuck. Hang in there.

  13. Carol Shaw says:

    Oh so sorry. Hope the Docs get your cruise control set for a long and comfortable ride. You’re in my thoughts.

  14. Oh, Scorchy…damnit…I honestly don’t know what to say other than another one of your fans (me) is sending you positive vibes. Night sweats and hot flashes will be nothing for you to handle!

  15. jbaird says:

    I’m so sorry, Scorchy. Your writing is so poignant, so apropos to those of us traveling in the Stage IV (not stage left) lane. May their plans to treat your lesions work extremely well and allow you much more time doing what you love. xo

  16. Brilliant women – you are – not to dwell, but not hiding either…

    I also wonder about hitting 55, and yes, it’s hard not to think about the stats, especially as our July anniversary hits.

    When you start the ovary killer shots, you may sweat like sheets of rain – from the top of your head on down – for weeks on end, at least that was my experience. My finally-grown-in hair was tied up, couldn’t wash it enough… but, just go with it, and carry a big towel, and wear a nice scarf around your neck so the sweat doesn’t soak your shirt… the initial blast won’t last too long, and I lost 20 pounds that first month. I guess there’s that. However, the hot flashes continued hard for many months. The masses of sweat did not last more than 6 weeks, I think. Around the seven month mark I noticed a wonderful decrease in the length of my flashes. Now, almost a year later, an entire day can go by without the red face and errant clothes stripping. I’m sure the neighbours are good with that, I know my son is.

    I started Xoladex (not Lupron) shots, and Femara (Letrozole) last August. Then Xgeva soon after. I get the Xoladex and Xgeva shots monthly, I read that sometimes these chemical menopause shots fail (very rare but it still scared me), so I decided to keep up with one month shots thinking one month failure was better than three.

    I’d love to join you on your 70’s rock ride… I’m an AC/DC woman myself… “No plans to exit just yet”… good to hear that! And, I hope you stir up trouble for many many years to come.

    I’m so glad you are in our lives.
    xoxoxo

  17. oh, scorchy…

    WTF??? i read the first part of your post and was in such denial – i thought you must be going back in time to tell about when you were first diagnosed. dammit. dammit to hell. well, honey-girl, i am so sorry. but i am right here with you, fearless and more than able to embrace the unofficial speed limit, with the top down and the music on really, really loud, screaming FUCK fucking cancer. lets just hug on tight to each other and hang on for dear life! passenger or driver – you get to choose…

    love, XOXO,
    karen, TC

  18. Fucking construction jams.

  19. I hate the feeling that we’re a bunch of guinea pigs for medicine. Your post makes me feel that all over again. You can’t hear me, but I shouted, “SHIT!” when i read this. I love what you said about having fun and stirring up trouble from your couch. That tells me you know the secret of joy, which is not necessarily synonymous with happiness, and certainly not for you right now. That spirit is what gets me through and I can see it gets you through too. Scorchy, you are a beacon of light and humor even in your pain. Thanks for being here right now, and hopefully longer than you think. We all love you and are rootin’ for you. xoxo, e.

    • Scorchy says:

      You’re makin’ me cry, dammit!! Thanks, Eileen. Man, we’re all so fortunate to have one another. I’m so glad Al Gore invented the internet. 🙂 xoxoxoxo

      • AnneMarie says:

        Yeah… me too…. Al Gore… I think I thanked him in one of my earliest blog posts… Without Gore, No Boob. Love you massively…. xoxox

  20. Reading about your progression makes me sad and angry. I’m sorry. Is there room for one more on this ride? Count me in.

  21. Editor says:

    This makes me want to howl with anger and sadness. I am so sorry.

  22. Scorchy, I’m so sorry. Many hugs, lots of love, and all of that sweet, precious stuff that a fire ball like you might make fun of but secretly appreciate. I will not, however, send you any Precious Moments figurines because that would be just WRONG.

  23. Oh, Scorchy…
    I saw the title of your post and my heart sank. All I can say is F*ck. I hate this f-ing disease and the wonderful people whose lives it tries to steal.
    I am so sorry for this beyond shitty news.
    I am thinking about you… xoxo

  24. janesplain says:

    Hi Susan. So sorry to hear about the progression. I may keep the picture of the Tamoxifen in the toilet. At this point for me, i don’t know if it’s working, I have my doubts, I hate it and I wish I could do the same. I’m also sorry about how this is affecting your work, I know you love what you do. It sounds like the coolest job in the world to me. I now say ” I’m being treated for cancer, I’m fighting for my career”. I read every blog you post, sarcasm is an art form too few excel at and you are a sarcasm machine. 😉You are also one of my heroes for sharing your journey with honesty, wit, and, of course, sarcasm. Thinking of you often (really) .
    Jane

  25. Oh, Scorchy. I’m sucker-punched by the news. I live in fear of the scan that tells me Tamoxifen has failed me too. I was afraid that bad news was keeping you quiet, but not this. Damn, damn, damn. Actually there were a lot worse words than that going through my head.

    I like the “just put one foot in front of the other” metaphor, though it collides with your turnpike. There are a lot of options the doctors can throw at you. Try the next one. I pray it works for a good long time. (OK, how did “I pray” get turned into “piracy” by auto-correct? Is that you trouble-making?)

    We are going to take a lot of different drugs before our days are done. That’s just the way it is. You see the “we”, don’t you? I’m on this ride with you. It’s gonna be a long one, so lets get comfortable.

  26. Cin says:

    Cancer f’ing sucks!! I wish I was closer to give you a huge Cin hug in person…. For as long as you need it. If there is one thing I’m good at, its hugs. Keeping in trouble from the couch…. Priceless. Never stop doing that. XOXO

  27. Crystal says:

    Scorchy, really sorry to hear this news. What a bitch! I have been thinking a lot about you the past few weeks. If you ever want to pull over and have a driver for awhile, let me know. Sometimes it takes the burden off the journey. Tight {{{{{hugs}}}}}

  28. Deb says:

    Crap, I’ve been hoping the big T would keep the c away or at bay for you! I’m about 500 days into T & they are running tests…so much for counting on it. It does feel like you’re on the road & never make it to your destination or you’re running up & down the halls at high school & can’t find your locker. I’m trying to enjoy today, actually enjoy the moment reading you blog. Hugs.

    • Scorchy says:

      Thanks, Deb. The locker!! Can I tell you how many countless nightmares I’ve had about not finding that locker or forgetting the combination!! I think high school was more traumatic than cancer. Sheesh. xoxoxoxo

  29. DrAttai says:

    You have an incredible gift for seeing even a little glimmer of light in a dark situation, and conveying that through your writing. Along for the ride with you.

  30. janesplain says:

    Hi Susan. So sorry to hear about the progression. And I’m sorry to hear about how it’s affecting your ability to work. I know how traumatic it is to worry about work while treating breast cancer and you seem very passionate about your job (which sounds like the coolest job on earth, to me). I read every post you write and I consider you one of my heroes; sarcasm is an art form too few are really good at, and you are a sarcasm machine. Keep stirring it up from your couch, hugs.

    Jane

    • Scorchy says:

      Thank you Jane. Yes, I keep that sarcasm machine well oiled and in tip-top shape. And with breast cancer, it sure has enough experiences to keep oiling the machine into perpetuity. xoxoxoxo

  31. dglassme says:

    “Hell, I can have fun and stir up trouble just sitting on my couch”, and that you do well.

    As I’ve already told you big fat f*cking pregnant pause at a loss for what to say…as our July diagnoses dates approach the one year mark, looking back it seems to have been jam packed with absolute chaos. Keep your head up, and keep on keeping on (I know easy to say hard to do).

    • Scorchy says:

      We can either give in or move forward. I’ll chose the latter. And look how many people we both have helping us move forward. I know for a fact that without this I would be adrift in a sea of self pity and depression. I’m here for you, D. xoxoxoxo

  32. The Accidental Amazon says:

    Aw, crap. I say we turn up the car radio, find some really good tunes & sing really loud. And make up our own lyrics. Hugs, babe.

  33. Oh no! I’m so sorry to read this news – hang in there Susan!

  34. Karuna Jaggar says:

    I am heartbroken to hear you have had such a hard May and that there is progression.

    You continue to be one of the most powerful, insightful, and damn-funny voices of the breast cancer community. Thank you for what you give to us all.

    Wanting to give something back. Hating the fact that I don’t have anything to offer.

    Just my thoughts. You are in them.
    Warmly,
    Karuna

    Karuna Jaggar
    Executive Director
    415-243-9301, ext. 12

    Breast Cancer Action
    Challenging assumptions. Inspiring change.

    • Scorchy says:

      Karuna, thank you so much. Hey, BCA’s got our collective backs! With a centurion like that at the ready, what more could I ask for? xoxoxo

  35. Marie says:

    F#ckers, you’re right. Induced menopause as well? Yes, one messed up traffic jam after another. You may not be at work, but you continue to work hard. This blog is a masterpiece. XO

  36. NotDownOrOut says:

    Sometimes words fail and I just have to hit my table with my fist.

  37. Janet G says:

    oh, stunned by the news and don’t know what to say. I’m riding with you

  38. lisaggreaves says:

    I hope the scenery on your ride changes soon. SO sorry to hear about your pain. Complete suckness. I’m sending lots of love and thinking of you all the time. Thanks for sharing your experience–you are an incredible writer. xoxoxo -Lisa

  39. gregsmithmd says:

    Thinking about you fondly.
    Your sense of humor and crazy positive vibe come through loud and clear every time I read you.
    Keep writing.
    Keep living.

    Greg

  40. I’m screaming lots of curse words in my head right now. I’m so, so sorry to hear this news. I did the Lupron shots for a year; if the hot flashes get ya, ask for an rx for Neurontin — it really helps tame those nasties. Know that we’re all behind you, cheering you on.

    • Scorchy says:

      Not looking forward to the hot flashes. I’ve had some as a result of Tamoxifuck and they weren’t pleasant. Hold my nose and jump in . . . xoxoxoxo

      • Hot flashes, ah the gift that reminds you that you are very much alive and sweaty. I’ve heard that neurontin can help as can SSRI’s. I opted to try black cohosh (slightly helpful) but have settled on acupuncture which is amazingly helpful. Insurance might cover it, too, especially if you also seek it for pain. I have a dear friend who is a licensed acupuncturist/oriental medicine practitioner in Brooklyn (http://stonewellacu.blogspot.com/). Message me on Facebook (Elizabeth MacKenzie) if you want me to ask him for a referral closer to where you live.

  41. Mary says:

    So damn sorry to hear of progression. Living in this limbo is hell which is why you got it right……live in the moment the best we can. I am right beside you. I had 8 months of stable on Faslodex and then PROGRESSION. Switched to Arimidex. My 3rd hormonal…not looking good.

    I wish you well every day and all day long, Scorchy.

  42. Knot Telling says:

    I’m along for the ride, sugar.

    Yes, it is demoralizing to hear of progression. The cancer may not kill me because I’ll catch my death of cold from dipping in and out of Da Nile.

    Hugs and whatever flavor of ice cream you like best.

  43. Katie says:

    I love the turnpike analogy at the end. You don’t need to be daredevil cutting across lanes and drag racing the whole way… You better intend on taking the very long, scenic route.

    • Scorchy says:

      Yeah, when it’s come to the NJTpk I’ve always been a middle lane kind of girl. But there are merits to hanging out in the right hand lane–passing the Q-Tips and people who are afraid to embrace the unofficial speed limit.

Enter the Fray

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s