Me and My Shadow

I have to be honest: it’s been a conscious effort to think about cancer recently.  Not that I’m complaining, who the heck wants to think about cancer all the time?  Who knew it could be so easy?  I love being back at the office.  I am so busy on any given day that I don’t have a second to think about what’s going on inside my body.  The pain is under control, scan results are good.  Bring on the denial, baby!

There’s this really odd space where you know you have cancer, but things are going along so well that you think everything is fine.  Indeed, so fine that it will stay that way.  It’s a false sense of security.  But what’s really odd about it is that it is a conscious false sense of security.  I know it’s bullshit, but I keep thinking it anyway.  Not a smart move.

I read the sad news that Lisa Lynch, author of the blog Alright Tit, died last week.  I read that with a heavy heart because I had just found her blog not very long ago and was making my way through her story.  Something she wrote resonated with me when she told her readers about her new found metastasis.

. . . this cannot be cured, but it CAN be managed. So here’s some good news. In terms of my prognosis, we’re not talking months, but years: hopefully lots of them.  . . .  And here’s some more good news: there is NO spread to my organs. Hence I’m told that there are plenty of things we can do to keep my pain to a bare minimum, to keep the dots [bone lesions] at bay, and to ensure me a very good quality of life.

Two years later she was gone, the cancer having spread to her brain.  Lisa’s description of her bone metastasis was just like the one I was feeding to my friends, to my family, and to myself.  I read on one discussion board after the other how women will say “at least it’s in my bones and not my organs.”  Really?  Last time I looked our bones were organs; not the soft and squishy organs we associate with death by metastasis, but an organ just the same.   Your blood feeds that bone as much as it feeds our liver, our lungs, our brains, and the rest of our bodies.   What, we think cancer cells will bypass or otherwise give up their stand as long as they’re living in Bonetown?

I wish I could find the discussion board on which I read this, but one person actually said that she had two lesions in her bones (I forgot where) and her doctor was adamant that this could be cured.  Someone stepped in and called horse manure, but the point was reiterated.  It was only in her bone and the doctor was sure that she could be cured.  You can read in the statements of so many people how they are relieved that cancer is just in the bone.  That it hasn’t spread to any organs.

Capture

When my surgeon first told me that it had spread to the bone he also gave me the same line Lisa had been told: it could not be cured it could be managed.  And he went on to relate a story of a woman in his practice who has survived well into a decade.  She was fine!  Oh, one time she had a cough, but they gave her a pill and it went away.  I was still trying to wrap my head around the fact that I had cancer in my spine, so I wasn’t ready to look up from my hands and wonder aloud just how much more bullshit I could take in one office visit.  He printed out the report for me and once I read it I learned (as I rode the bus home–around 72nd street to be exact) that I not only had cancer in the bone, but lesions in both lungs, and lymph nodes in the medistinum and right axilla.  Jeez, Doc, think you missed a few things?

What’s with the rosy glasses and the “it can be managed” line?   How many people hear that (me) and hope they’ve got another decade ahead of them (me, Lisa Lynch, whomever else).  Yeah, sure it can be managed.  Half manage to stay alive for an average of 36 months, the other half–well who knows when they eventually drop off the chart.  Even my wonderful oncologist Dr. Raptis, when he told me the mean survival rate, balanced that with the statement that I was responding well to therapy and that was a good sign.  I love the man, don’t get me wrong, but it’s a good sign that I’m responding to Tamoxifen.  These ovaries are going to shut down at some point and then what?  (Though maybe I could get estrogen therapy to keep them working.  It’s not like I have to worry about getting breast cancer. )

So with that as a backdrop, is it any wonder why I love that I am so busy every single day so I don’t have to dwell on the fact that I have breast cancer?  Cancer is kind of like my shadow:  I can never get rid of it.  Its connection to me is seamless.  And most of the time I am never even aware that it exists until it blocks my view and distorts what I am trying to see.

This is why, when it comes to my diagnosis, I want to keep the sun in my face.  I like to be busy enough so that I don’t obsess over the cancer, but I don’t want any stories shellacked with layers of happy platitudes and positive spin so that I don’t lose sight of the seriousness of what it is that I have.   Believe me, I don’t want to see that shadow, though I know that someday it will be right in front of me blocking the rest of my life.

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

48 Responses to Me and My Shadow

  1. Cancer is crap.

    My oncologist set me straight on this immediately. During one of our first visits I warbled idiotically at him, “if I have to get cancer this is a good one, right?”

    He looked at me for a few long moments as if to gauge my receptiveness. “There are no good cancers,” he said finally.

    That’s when I understood through and through.

    So to me, if you want to keep the sun on the face of this then i am here to celebrate that with you and much, much more. Because metastatic cancer is too much to take in at once so let’s knit, instead, and talk about our favorite books of all times.

    Much love to you,

    Jody

  2. Big Big HUGS to you! Keep facing the sun my friend. xo

  3. dear scorchy,

    i haven’t experienced bone mets. but i think what you’ve written about all the bunk given by doctors and others to those who get that diagnosis is so right on. i admire and applaud that you avoided telling about your new found appreciation for denial (it’s true! it really does serve a purpose at times), and the joy you are feeling with returning to work, et. al. in a vacuum; fleshing out all the feelings and reactions that accompany bone mets that is not pretty obviously spoke to so many who suffer and struggle with those realities, just as you do.

    i have been touched to tears with this post, scorchy, with all the comments, and with your responses to them. i am sure that all your heartfelt empathy, compassion, and encouragement has been a wonderful gift to all who walk in your shoes.

    much love, XOXO

    karen, TC

  4. philly639@aol.com says:

    I read this, as usual it’s great. You are a wonderful writer and I am sure an inspiration to a lot of people including me. Your right, go on keeping busy enjoy everyday and what the day can give you. All the little things, a smile from a stranger, the sun on your face, the wind, the smells in the air, the tastes of great food. Everything that is going on around you while you walk to work. Just enjoy life each day, everyone should do that, but sometimes we get too wrapped up with what is going on in our head that we forget there is a world out there that can make us feel good if we just look and around and listen. Spring is here the best time of the year. This is Gods way or (whatever we believe in) that life goes on and that it can be beautiful if we let it. Bought some pansies the other day, put them outside it snowed and then froze on them………but the sun came out the next day and they bounced back with their beautiful colors. Proof that if we just wait life and all it’s glory is there if we just let ourselves enjoy it and appreicate it. Love ya Sis.

  5. hermyleen says:

    Hi Scorchy do you know what breast cancer Lisa Lynch had and what treatment she was having prior to her brain tumour? Your post really hit a nerve there and I’ve been a blubbering mess today. I guess my diagnosis is still very fresh.

    • Scorchy says:

      I do not, hermyleen. But please know that you are tapped into a global support network that will be there for you no matter what. We are the folks who “get it” and who you can turn to for a good rant, a good cry, when you’re panicking beyond all socially acceptable limits or when you find humor in the darkest places. I’m there for you. It’s natural to be scared and to compare, but don’t let that guide your thoughts. xoxo

  6. Thanks for your post. It is wonderful to hear working provides your mind with a sense of focus on something other than cancer. I’m was diagnosed last Fall stage 4, first breast cancer diagnosis with bone mets at age 35. I too have been told “at least it’s just in your bones,” or “you have the better scenario” by other patients, and by a previous doc “its manageable,” and “I have a patient like you I’ve been treating for years” repeatedly! Of course I called said doctor out, as the patient’s diagnosis path was different than mine, not starting at stage 4 at such a young age; I just couldn’t take hearing that every appointment –we are not the same person! I find the comments I mentioned, in general to be somewhat dismissive with reference to bone metastasis, and surely it does not provide me with any comfort.

    • Scorchy says:

      First of all: DAMMIT! DAMMIT! DAMMIT! Second: Yes, that comment can be very dismissive, but I think they’re trying to put the best picture on it. I think that is okay on the first day when you’re trying to wrap your head around this, but as we learn more about our disease and begin to come to terms it’s time to drop that and just speak in honest and straightforward terms. Nancy’s Point wrote a great piece about docs being dismissive–good read and I recommend it if you haven’t already seen it. xoxo

  7. DrAttai says:

    There is no such thing as good metastasis, just as there is no good cancer. HOWEVER – I am so happy that your cancer seems to have gone into hiding, and hope that it stays hidden for a good long time.

  8. Pilgrim says:

    Yes! Me too!

  9. AnneMarie says:

    AYEEEE…. I have no right to get angry as a non-mets patient but as a Fearless Friend, this in-freakin-furiates me….. Not only do we feel the need to have that hierarchy among breast cancer but now a pecking order with bones be “ok” but the rest somehow more dire.

    Love you Scorchy….

    xoxox

  10. Vera says:

    Crap. I have bone mets too (since Oct 2011) and my family refuses to come to grips with the reality. They pretend I am going to be around forever, that the low level of symptoms I’m having will always be the case. I struggle and feel very alone in my reality. No one is doing us favors sugar-coating it. Yes, I’ve responded well to treatment. Yes, the cancer is not really active right now. Yes, I feel pretty good. But do I fool myself into thinking that my life expectancy is like everyone else’s? Not a chance.

  11. You said it, Sistah, and said it well. I had tears this morning as I read this and saw my own thoughts and emotions in it. Thank you.

  12. nancyspoint says:

    Hi Scorchy,
    Yes, reminds me of when people say things like, well at least you got the “good cancer.” Good cancer, good metastasis – there’s so much BS out there! Thanks for shining a light! And it’s great you’re keeping busy at work. I marvel at those who hold “real” jobs post diagnosis. Great post.

    • Scorchy says:

      When I was first diagnosed and telling my mother about this (before I learned about the mets), I fed her the same line. “Don’t worry mom. If I’m gonna have cancer then this is the one I should have.” I learned a lot more since then. Oh, how we have learned, eh? Keep on keeping on, Nancy! 🙂

  13. Amazing post! I too have always told myself that i was somehow better off for having bone mets… even if it’s a load of bull, it gives me some hope. Having just had a clear set of scans 14 months post diagnosis I am now in even more hopeful denial. Living as if the cancer will never return but knowing in the back of my head that the statistics are not in my favour. But what do we gain by focusing on that? I’m with you – I’d rather just enjoy theses good moments & keep walking on the sunny side of the street. Hugs. Thanks for keepin it real!

  14. You keep living your life, Scorchy!

  15. How much do i love this post? Thiiiiiis much! My tulips are pushing through the dirt, i’m writing haiku, and i’m looking forward rather than over my shoulder. Thank you!

  16. Greg Smith MD says:

    I hope you stay busy for YEARS. YEARS, I say!

  17. createjoys says:

    Guilty! I’ve said those very words while dancing in the sunshine with my head in the clouds and then been slapped back to reality with rising marker numbers. It’s tough finding the sweet spot of balance between hope and reality. I love your posts. Thank you.

  18. OceanBreeze8 says:

    I am in the same situation you are with bone mets diagnosed 11 months ago. You words are my thoughts and I thank you. I look forward to every one of your raw, real, thoughtful, and difficult to read posts. You get it and I appreciate that very much. We will never meet but you give me validation of my thoughts regarding MBC.

    • Scorchy says:

      DAMMIT! DAMMIT! DAMMIT! I am so sorry that you are going through this. Let’s hold hands and get through this together–albeit virtually. Keep the sun in your face! (Don’t worry about the sun. What’re we gonna get? Cancer?) Thank you for your kind words. ((((hugs))))

  19. hermyleen says:

    thanks for the reality check

  20. Pingback: A rainbow for Lisa | Kit and Kabooble

  21. Knot Telling says:

    Thanks for the reality check, Scorch. I actually heard myself talking about the “good mets” the other day. At the moment I am swinging between “da Nile” and the “valley of the shadow death” in my emotions and attitude to this disease.

    Your voice is important. Thank you so much for blogging. Hugs.

    • Scorchy says:

      It really does a number on us, doesn’t it? I’ve got your back as much as I can from across the world. (Never mind how you slay me in Words with Friends!)

  22. Girl, you nailed it. I remember so clearly my oncologist telling me that once the cancer spreads, it’s no longer curable but manageable. It seemed rather harsh at the time, but I’m grateful for his candor and I hate that other oncologists aren’t as forthcoming. There’s a fine line between hope and reality.

    These words really resonated with me: “Its connection to me is seamless.  And most of the time I am never even aware that it exists until it blocks my view and distorts what I am trying to see.” So true. When I was a kid, my mom always told me to walk on the sunny side of the street. You keeping the sun in your face reminded me of her sage advice.

  23. You give us all courage and strength through your blog Scorchy. Thank you for being so real. I think you’re right on the money. It seems the secret is to keep loving life and pouring those good feelings through. Belinda xx

  24. Katie says:

    “Just in the bones.” Goodness, cancer really seems to have a knack for getting people to cling to hope… Not always a bad thing, but it can be dangerous, too. I suppose we should inform the world that a sarcoma is no big deal.

  25. Victoria says:

    Great post. This morning I was staring down all the plants and seeds and bulbs (husband picked up some nice ones in Amsterdam) I have stacked up on the patio. Just didn’t have any motivation to get them into ground because I wasn’t feeling hopeful. And let’s face it, putting a lily bulb into the earth is an act of hope. Says, “Hey, maybe I will be here to see it bloom late summer.” So I stopped thinking and started doing – went and put on my gloves, got out my spade and started digging. Feeling much better. 🙂

    • Scorchy says:

      What a wonderful decision you made! Of all the things I miss when I moved to the city, it was gardening. You can bury all your troubles in a garden. I’m mso glad you decided to plant! xoxo

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