Where's the "strong" in LiveStrong?
Normally, I’m more upbeat than this post. But today I sat (or rather, laid) here reading a support forum post about “hope for Stage IV” from a caregiver, where the patient is less than a year out from diagnosis…overjoyed to be converted from inoperative to potentially eligible for surgery.
I remember that feeling. I was excited, too.
I read a post from a 27 year old Stage IV colon cancer patient two weeks out from colon/liver resection surgery, who wants to know about her fertility options. She wants to bear a child – even though, even if she could, her chances of living long enough to raise that child to adulthood are still slim and none.
What I found, after my visit to the support forums, was a crystallization of thoughts that have been floating in and out of the pain meds all weekend. Someone needs to say this out loud. I guess it might as well be me.
Long term survival can suck. It can make you feel “less than.” It can rob you of what you thought your life was all about. Why? Because…
Cancer comes back. Cancer is relentless. Cancer doesn’t give up or relax for one second.
You can do all sorts of things to cut the cancer out of your body – liver, lungs, omentum. Guess what? You may be cancer-free in that organ…but it doesn’t mean that you’re cancer-free in your body.
Yeah, I am cancer free…in my liver (although there’s this one suspicious spot…)
However, 3 1/2 years out from my initial dx, the cancer recurred at the original rectum resection site. By the time the docs operated, I was “locally advanced” – the tumor had wrapped itself around my left uretur, and there were cancerous cells near and around my cervix. In addition to removing the new tumor, the docs also did a full hysterectomy, carved a lot of tissue out of my pelvic wall, and rebuilt my bladder and left uretral connection after peeling the tumor off the ureter. The operation saved my life, but left me with life-changing physical issues like incontinence and a mysterious pain and weakness in my left leg.
This year, 7 years out from my initial dx, the doctors found three lung lesions (recurrent CRC) and confirmed bone mets in my sacral spine and pelvis (that mysterious left leg pain – it’s a tumor wrapped around and pressing on my sciatic nerve.) None of it is operable, and I’ve had the lifetime max of radiation in my pelvic area. But the lung tumors did respond to my doc’s invented regimen of 5FU+Erbitux, 6 weeks on, 2 weeks off.
So Thanksgiving week, I had RFA on two of the lung mets – which resulted in two weeks in the hospital in NYC, a blood infection, removal of my original port, insertion of a PICC line, and a halt to chemo (which was controlling the bone mets pain) for the last six weeks.
In two weeks, I get another port and more chemo. Except that I’m not sure I *want* another port and more chemo. Except that I know chemo was controlling the bone mets pain. Except that my life wasn’t really “normal” while I was on weekly chemo. Except…I am tired. Really tired.
I have a permanent colostomy. I have permanent urinary incontinence and should own stock in Depends. I am in pain, almost all the time. I can’t sit or stand for extended periods – sometimes, for any period. I am no longer strong enough to train my dog. I have a hard time climbing stairs. I have a brand new (to me) teardrop camper that I may never be strong enough to camp in. I spent the 2011 Christmas holidays either taking oxycodone to stop the pain or sleeping off the pain meds. No, I’m not living my life the way I wanted to live it.
Cancer isn’t for wimps. Neither is long-term survival. I know a woman, Suzanne, who’s been doing this for 12 years. I don’t know if I have that kind of strength.
My “hope for stage IV?” That none of you ever have to live through this. Ever. That none of you have long-term survival foisted upon you. That none of you ever have to decide when enough is enough.
I am the 27 year old who you think has a “slim and none” chance of beating creeper cancer. Quite frankly – and not surprisingly – I disagree. And I disagree for good reason, too. After all, I know my situation and myself best. You point out that creeper cancer is resilient; but so is the human spirit. I know Stage IV survivors from all walks of life, and despite innumerable differences, they all agree that attitude is everything. More than 50% of the battle is mental, they say. It seemed logical and reasonable to me – figured they know what they’re talking about – and I decided to give it a shot. And while some might regard my hopeful and optimistic tone as foolish naiveté, most have found it an inspiring and timely reminder to never, ever, ever give up. While I know your comment about my survival odds was probably not meant as a personal attack, it hurt a lot. I know your situation hurts, too. I’m sorry for that. If I could rid us both of creeper cancer, I’d do it in a heartbeat. But I also don’t think ANY of us (no matter how tough it gets) should dismiss the small victories – the small hopes – of others. Whether it be potential surgery, potential motherhood, potential cure.
Jordan, first – sorry it took me so long to thank you for your comment. I’ve been tied up for the last two weeks doing a freelance study review gig for the Dept. of Defense Peer-Reviewed Cancer Research Program. Government agencies can be really intense about deadline metrics, and I had to let a lot of my own writing slide. So, a belated thanks for stopping by.
You’re right, Jordan, that my comments about the survival odds of Stage IV patients (even those of us lucky enough to qualify for liver resection) weren’t aimed at you personally. Even more important, my comments about considering pregnancy after a Stage IV CRC diagnosis weren’t aimed at you personally. Back in 2009, I wrote a similar post from the five-year-survivor perspective. If you take a look at “Priorities: Stage IV but I want to have kids” – including the comments – you’ll see that I in no way consider motherhood or making a difference in the life of a child “a small hope.” However, I do recognize the very big difference between a small hope and the huge victory of successfully parenting a child.
I’m glad you’ve started a blog, Jordan (for those who’d like to follow along, it’s out on Blogger and called “Booty Call.”) Writing your way through cancer is one of the most therapeutic ways to handle living with cancer. I look forward to following your progress, and hope your first Folfox treatment goes well as we dip further into deep winter. Please come back to visit LOL anytime.
I dont care about your government project that makes you feel important and neither does [name deleted.] (sorry [name deleted,] but I know you don’t and you can be mad at me for sticking up for you later).
What you said was mean to the core and although [name deleted] may feel some cancerous connection to you, I dont, and I’m allowed to be angry. You owe [name deleted], her family, friends, law school mates, pharmacist, oncologyst, mail person, dog, and dirty clothes, an apology. No fluff to make yourself feel high and mighty, no explaining away biology and studies, a very plain, “I apolozie and what I said was insensitive”.
You should be ashamed of yourself.
Note from PAS: the individual name referenced by this commenter was deleted to protect that person’s privacy.
While you are free to leave a comment here at Life Out Loud, please understand that what I said about the prognosis for Stage IV patients for both survival and childbearing was true as those percentages exist today. I do not apologize for my thoughts, or my posts – and certainly don’t apologize for posting a known fact.
Some people do consider facts and truth insensitive and offensive, but I suspect your friend is made of tougher stuff. She has to be – she’s dealing with cancer.
I never mentioned your friend or any other person by name. Your comment did mention your friend by name (multiple times – I edited the name out). Until your comment, my readers might have gone happily through their lives without identifying anyone specific from the information I posted. By coming forward and trying to call me out, your attempt to make this personal has also violated your friend’s privacy…something I didn’t do.
As she’s posted in her own blog, your friend clearly has feelings about what I’ve written here and elsewhere. But since she’s already commented here once, I’m sure she’ll contact me directly if she feels the need.
I hope you enjoyed stopping by Life Out Loud.
Everyone – thank you for your comments and your support. K2, I’m with you in spirit in each step you take. Az, Kate – both of you are inspirations to me and lift me up in different ways. And Maryna, I thank you for your gifts – mountains are one of my favorite visuals.
I think the hardest part of this is getting and keeping the pain under control. And I know that once I do that, I’ll be in a much better emotional place. Until I get there, I also know that oxycodone is my friend, and that I am surrounded by people who care…and that I will get over this particular bump. Maybe not as elegantly as I have in the past, but hey, nobody’s keeping score, right?
Good 2012 to all of you. Now…I’ve gotta go tweak this new design!
I love you.
And I’m here (at least for now!).
Lean on me if you ever think it might help. You know how to get in touch.
ps
love the new digs!
I don’t know you, but I know from this writing that you have a level of courage, integrity and honesty that I aspire to. I send you my mountains, they’re perhaps big enough for such a big heart. Maryna.
Pat,
Your words have helped many people. Your writing is so strong, your zest for living so inspirational. Whether it is a love of food or dogs or finding the best answer to practical problems like where to stay during treatment in New York City, you have a very special gift.
But when enough is enough, you can choose comfort. And peace.
We love you.
Pat,
I am also approaching this decision myself. My 4 year anniversary is in 4 months. I am no longer normal, and am always chasing my tail after chemo, managing constant severe pain, my continual mobility issues, and lack of strength. 22 hospitalizations in 3 1/2 years…when is enough enough.