Friday, December 21, 2012

STILL NOT A GIFT

It's been a week since my last blog post, the one in which I answered the question of whether or not I think cancer is a gift.

Cancer is still not a gift.

A number of people commented on that blog post, including Ann, who blogs over at the incredible But Doctor... I Hate Pink — and for whom metastasis to her liver means she will never recover. She writes, "If breast cancer is a gift, I'm not exactly crazy about the wrapping paper. My 'gift' looks like a two year old wrapped it, then sat on it." Ann is funny that way. No matter what she is writing about, her pervasive humor seeps into every nook and cranny — every comma, every letter, every word.

But Ann also knows when to get serious, and does so in the rest of her reply...
"Since I have cancer of the terminal variety, I can't think of it as a gift. Three years ago, I was blissfully ignorant of my mortality, imagining my son's high school graduation and future weddings. Now, I am making lists of things I want people to have after my death, and who knew I had so little to, um...gift? I do appreciate my remaining life more, without a doubt. I am able to ignore the pain more because I still want to enjoy what's left for me to enjoy... But, is cancer a gift? No. Cancer is a disease. Learning that I am strong enough to handle it may be a gift, but I also could have learned about my strength without having paperwork that says I have a year to live. Maybe by changing a tire or something." Getting in the last laugh is most definitely one of Ann's many gifts.

A close friend of mine, M., also replied to my last blog post, offering her [non cancer] take on the whole "gift" thing: "It's extremely arrogant for someone who is not the person going through the horrible event to call it a gift," she writes. (I totally agree.) "If you are the one who is going through this terrible event, then your own state of mind might surely affect your spirit, your attitude, your feelings, your mind, and ultimately your body." 

Again, agree. The mind/body connection is an important one, and the role our mindset plays on how we feel can not be understated. Stay with me here.

(© Stuart Smalley/Saturday Night Live)
M. continues by posing a question: "It's not making believe that this illness has been a 'gift' like [SNL's] Stuart Smalley looking into a mirror and saying, 'I'm worth it!' but it might be about making a 'choice.'" 

She's right, I know. I technically do have a choice every day whether to feel up or down, mad or sad, glad or grateful, pissed off or ready to party. Until I don't have a choice. How I feel about my cancer experience varies from day to day, week to week, minute by minute. When I wrote that last blog post, I was feeling down, down, down for reasons I hadn't shared with anyone other than Husband, and my special group of online ladies. 

The rash I have been dealing with on my right foob had gotten worse. It has skipped across my right foob and is creeping over to my left. Round, angry splotches, more of them, now evident. I have gone through seven tubes of anti-fungal cream during the course of the seven weeks we've been treating this as though it were ringworm. It is supposed to be ringworm. 

I call my primary care physician, Dr. S., but I'm told I have to wait a month for an appointment. That is not acceptable, I explain. Dr. S. calls me back during his lunch break. I tell him the rash is still there, getting worse. I need to be referred to a dermatologist. I need a scraping done. I need the cells tested and sent to a lab to make sure this is ringworm. He tells me there has been a "cancellation" — can I be there in 3 hours? Gulp. Yes.

I was planning to wrap Christmas presents this afternoon but instead I find myself in a little white paper semi-gown, laying down on the examining table, Husband by my side, Dr. S. wielding a sharp implement of some kind (I couldn't look) to scrape some cells off to sample. But nothing is flaking off. Then I hear him say that ominous doctor word: "Hmmmm." Oh, that is not what I want to hear.

Dr. S. tries scraping again, then pauses. "This isn't ringworm." WHAT? Of course it is! That's what you told me it was! You were so sure it was ringworm!! I don't say this, but I think it. And I start to get mad. I ask the obvious... So what is it then? He doesn't know. But then he says the words that you never want to hear ever again after you've heard them the first time: "We have to rule out a local recurrence. But this doesn't look like breast cancer. And it doesn't look like ringworm. It looks like an allergic reaction. You need to see a dermatologist."

I have to stress here yet again how very, very important it is to be your own advocate. I knew my rash wasn't getting better. I waited longer than I should have to go back in to check it out. I fell into the comfort of denial. Because it's hard to face the fear.

It falls to you, the patient, to make the medical community find the answers you need. It sucks but it's oh so true.

Since I'm in an HMO, I have to wait for a dermo referral approval, and we are now caught up in the rush before Christmas, and here I am, in the same sticky pre-holiday boat that I was in two years ago, trying to get in to see a doctor at the busiest time of the year. 

I come home from the rash scraping and crawl into bed (even though it is still light out, and you know how early that means it is since it gets very dark, very early this time of year). Husband asks if I'm hungry and should he go pick up something for dinner. YES, I tell him. Please. Leave. I need to be alone. I tell him cancer is a real mind-f***. As soon as he is out the door, I start to sob. And the air, once again, is sucked out of the room.

Between my appointment with Dr. S. and waiting for the dermatological referral to come in the mail, I do my best to force the dark thoughts back into the recesses of my cobwebbed mind. And that's when I came across Nancy's blog post over at Nancy's Point asking, "Is Cancer a Gift?" And I sit down at the keyboard and I type out my messy, opinionated missive. 

My friend M. didn't know about my rash getting worse; she was likely wondering why the sudden negativity. She was trying, I know, to make me feel better, to get me to grateful. Then Nancy commented about M.'s comment, saying, "I admire this person for being so accepting. I really do. I agree that all of our experiences make up who we are. I agree it's all about choice - we move through the challenges of life in the best way we can. I am grateful for the people I've met, (like you, Renn), and the new paths I've discovered since my diagnosis, but the words "cancer is a gift" will never come from my lips. They just won't." 

Then Beth Gainer, who writes the awesome blog Calling the Shots, chimed in: "Cancer is certainly no gift, in my opinion. It's a horrifying disease that robs, steals, maims, kills.... 

My life is richer after cancer because I realize how precious life is. But that was because I was open to an attitude and life change. I did that, not cancer."

And then Kathi, from The Accidental Amazon, stopped by to add her thoughts on cancer: "I always thought of it as the Stalker." (True dat!)


Finally, Michelle over at Mad Musings, said, "You nailed it. It's no gift. I lost my husband, mother, sister-in-law, and aunt to cancer all within 1 year. My 3 children were robbed of their father and other key people in their lives before my youngest was even in school. People constantly told me how inspiring we were, lucky to be given the opportunity to find such wisdom, etc. Seriously? Lucky? We made the best of the time we had, but we always felt those sights on us, always felt the hunter's presence even when we were laughing. That's no gift. The true gift is never facing cancer, remaining blissfully ignorant of it. Thank you for saying it straight out." And then she referred me to a blog post she wrote in 2010 in which she expresses the feelings that are familiar to so many of us. 

So here's the thing about being kissed by cancer: It's haunting, unwelcome, and impossible to shove in the closet. The darkness sneaks in at the slightest provocation. I can't control it. It's like trying to shut down a panic attack. You just gotta ride the wave.

Normally I reply to reader comments right away — mainly because I'm thankful anyone reads this little Big C blog and I want you to know I know you're there and that I appreciate your taking the time to spend even a little time here. But because I was worried about my rash, and not really knowing what to feel, I was kind of stumped. I needed time to process the comments. And while I was processing, the Newtown school shootings occurred. My troubles no longer felt very relevant.

Then I read a Huffington Post article by the lovely Lisa Bonchek Adams, another fine breast cancer blogger I have been following as she, too, navigates the murky waters of metastasis. And lo and behold, as I'm reading, there are those five words again: Cancer is not a gift.

As Lisa writes, "I am treating my cancer but I cannot cure it. I have no way of knowing yet if I will be someone who responds well to treatments or not. So I proceed as if I think it will. I try to dispel myths along the way. Five years without a recurrence doesn't necessarily mean you're done with breast cancer. Cancer is not a gift. You're not always given what you can handle. Things don't always happen for a reason. You don't always get what you deserve."

Amen to that. And please send healing thoughts and prayers to Lisa and Ann and all the women with mets dealing with a shortened life due to Damn Cancer.

Post Script #1: Yesterday I got in to see the dermatologist. He was a nice enough guy — very quick with the razor though. (Thank goodness for the small miracle of having desensitized feeling in my foobs!) At first he said, "This doesn't look like ringworm." Scrape, scrape. "It looks like dermatitis." Scrape, scrape. And then, "I think this does look fungal!" They put my skin cells in a tube, where they'll hang out and grow for three weeks until I see him again. In the meantime, I'm to use a steroidal cream on the rash twice a day, and change my shampoo and conditioner to noncomedogenic ones (I already switched my soap and laundry detergent ). We did not mention the Big C. We did not mention recurrence. Until someone proves to me otherwise, I simply have a rash of unknown origin. Merry Christmas to me. And to all you wonderful readers too!

Post Script #2: Lisa Bonchek Adams re-posted her "Cancer is Not a Gift" post on her blog here.

19 comments:

  1. dear renn thank you for understanding my intentions...and friends of renn...thanks for educating me more and more with each new blog. i think, with not being in your shoes...i struggle with wanting to make things better in some small way...and since there is absolutely nothing i, as an outsider, can really do (except to listen, really listen)...i shared what i, myself, do when faced with my own version of horrible times. i hear you...and i love you... and i pray, wish, and visualize for your healthy, healed, happy wonderful self. always your kindergarten friend, m

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    1. Thanks, M. I understand your frustrations, and your intentions, and the realization (for both of us) that we can't always make it better. The ears are such a gift. (Hey, maybe that should be my next blog post!) ;-)

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  2. dear renn,

    i am so very sorry for all you are going through. i admire your thoughtful and gracious but also truthful responses to both your previous and current posts. i also understand the dreadful feeling of helplessness that others feel to try to make things better - empathy is sometimes a double-edged sword that can lead us into dangerous waters. we've all been there with those feelings and also
    know the anguish of coming up short, when we just wanted to do or say SOMETHING helpful.

    this current post is testament to the truth that we don't always say what we mean, and don't always mean what we say. for whatever reasons, whatever circumstances. often it takes time to arrive at a perspective that allows us more clarity, both within ourselves and with what gets reflected on our conciousness from others. both you and m show us how an attitude of humility and generosity and willingness to exercise introspection can be so healing. it's the people who just walk away, or dig their heels in, or simmer in hurt feelings or anger who cheat themselves and never have the chance to learn - both about themselves and about others. though i am only a commentor and not a blogger, i am so proud to be even a small part of such an important conversation that honors those of us with breast cancer and what we go through - diagnosed with ST IV metastatic BC just a year ago - and those who would do anything to be able to offer some measure of comfort. cancer is not a gift, no, it definitely is not. but what we achieve by sharing stories, experiences, pain, longing, fear, daily struggles, our frailties, and our triumphs is a precious and enduring gift.

    i will be BELIEVING for you, dear renn, that this time you'll be getting answers about the rash so there can be a plan to deal with it and get it GONE. keep writing as you do so beautifully and thoughtfully, and keep us posted so we can keep reaching out to listen and embrace you with healing thoughts.



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    1. TC, thank you so very much for writing. Your insight is spot-on, and I SO appreciate your participation in this dialogue. If I had to pick one issue that has come up for me the most during this whole process, it is my profound confusion (and often, disappointment) surrounding people's reactions to me, to my cancer, to my reconstruction and to my healing. More honest dialogue is needed, for sure, between the cancer community and the people who love and support us. Somehow we have to bridge the gap of misunderstanding. A light bulb is going off for me as I'm writing this. I think I may have found my focus. Thanks, TC! I wish for you much kindness, support and healing. xo

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  3. oh, crap! i forgot to sign the above.

    love, XOXO,

    karen, TC

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    1. thanks, 'cause of course I was wondering!!!! See above reply. :-)

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  4. Renn, I'm sorry for your anguish about this recent round of medical turmoil. And again, cancer isn't, wasn't and never will be a gift. Never. I don't think one can say that too many times.

    Thanks for mentioning my post and for quoting me. I'm honored. Thanks for keeping us updated and I hope you get to relax a bit and enjoy your holiday. Big hugs.

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    1. Thanks, Nancy. And thanks for writing the post read 'round the world!

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  5. I would never think cancer is a gift... yes a person might learn to appreciate life better but I agree there are certainly better ways to learn this than having cancer..

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  6. Renn, I think I'm guilty of putting a positive spin on whatever it is that comes my way. Not at first, not when my world is in turmoil but later, when I'm trying to climb out of the hole. People want us to be well. They want to believe we can 'beat it' - they want to make it pretty. "Blessing" and "gift" are two words I struggle with. I believe I am here to learn and grow and I also believe that my greatest opportunities to do so have been rooted in loss, illness, pain, suffering. I can't help but feel fortunate - at least for today - because I see so many people suffering and I know as far as the Big C goes, I am one of the fortunate ones.

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    1. Hi Shannon! We all work through our "stuff" in our own unique ways, and each one is valid. I agree there is always something to be learned from struggle and strife. I just really don't like the "gift" term.

      PS I'm working on a blog post about the positive spin. Stay tuned!

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  7. Also... I didn't realize your rash was getting worse (I've been very self absorbed lately). Don't get mad at me second guessing this but has anyone mentioned mursa?

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  8. The next person who tells me cancer is a gift is going to get a gift from me: a certificate for a root canal. But it's a gift! And really, it's not as if we're horrid, superficial people who needed cancer to wake us up. No doubt,cancer changes lives. It takes lives, too.

    Other than that, I hope the rash has cleared up for you!

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    1. Eileen: A root canal gift certificate is a great idea and made me laugh!

      Cancer def. changes lives and takes lives too. Well said. Thanks for stopping by. :-)

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  9. I absolutely agree with everything you wrote. I too have been given this so-called "gift" you speak of. In some ways, I have said to some family members it was a blessing in disguise for me though. A blessing because I held onto my children tighter, I found things out about my health I wouldn't have found out otherwise, such that I have Grave's disease on top of breast cancer. A blessing because I have found resources to help me fix my teeth, my mental health that normally wouldn't have been available to me. A blessing because of the wonderful medical community I have interacted with over the past two years. However, it is also my right to be pissed as hell. It's hard to be positive all the time even though we're told 80 percent of recovery is positive thinking. Any kind of cancer to me is a mental anguish that you can't escape from. It's constantly present in your daily life whether you're trying to muster enough energy to lift yourself up out of a chair, or drive to your son's basketball game.
    I do love the metaphore of a gift and wrapping paper though. Sometimes people just act and speak before they actually realize what they've just said.

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Your comments are encouraging — and encouraged!