Today’s post is longer than usual. I get great emails from people who have read my book Everything Changes. I thought I’d share this one with you and my response:
Dear Kairol,
You’re the only other person I’ve found with a tricky case of thyroid cancer with no cure. How did you deal with it? Having my cancer labeled as “recurrence” worked because then we could do something about it. But now it is seen more as incurable. The constant monitoring and the knowledge that it’s lingering sucks. Lately I’m always thinking about it. Did you just accept it at some point? How long did it take? Blogging helps a bit to get the thoughts out of my head, but it’s sort of driving me nuts. Any suggestions, advice? - Robin
Dear Robin,
You’re in territory familiar to anyone living with chronic disease. It is very unusual for papillary thyroid cancer to be incurable, but here you and I are. I’m living with two tumors in my neck and am not receiving treatment (I’m refractory) and won’t have surgery unless they grow significantly. I’m doing this under close supervision of a top-notch doc at Memorial Sloan Kettering. This approach is a recent shift for me. Your question made me reflect on how I’m coping with incurability. Hold tight, some of this seems nauseatingly Oprah-esque but just stick with me:
Acceptance and relief. My experience is opposite yours. Knowing that my cancer is incurable has dissipated my fear and anxiety somewhat, which is hilarious considering what a high-strung freak I can be. When we still thought there was a cure, I was hyper-stressed wondering “Will treatment work this time?” “Will my scans show me as cancer free?” It seems twisted, but in this world of being incurable, I find relief in not having to grapple with these unknowns and in not having to recover from the continual and exhausting disappointment of bad news. Of course I’d rather have good news, but I’ve rarely received good news in nine years of cancer and I’m sighing with relief at calling a spade a spade.
I now mark success not by the absence of cancer but by whether the tumors have grown or stayed the same (I want to include shrinking as an option but I feel too jinxed to do that.) This is a big change that I’m still adjusting to. And yes, waiting for blood test and scan results still SUCKS but is getting ever so slightly easier with time. Either that or my distractions are just getting better.
Expert Care. My new doc primarily sees patients with challenging cases. He has no pity, confusion, or odd curiosity about my case. He has seen tons of patients in my shoes and can tell me what to expect. This is tremendously reassuring.
Deep Distraction. I’m good at feeling my feelings, and at finding supreme distractions: a person can only take so much wondering if cancer has spread to other organs. My book Everything Changes hit the shelves while the reality of my chronic condition was unfolding. Keynote speaking, blogging, answering fan mail, and having book parties around the country are incredible distractions. (Anyone who wants to host a book party for me – just say the word!) There is a fine balance between running from reality and plunging into a well deserved, therapeutic lifestyle of perfectly legal distractions. Find that balance.
Simple Comparisons. 98% of the time comparing oneself to other cancer patients is a supremely bad idea and only leads to jealousy, guilt, or worse - forced gratitude. I have found a small exception. I live daily with the intimate stories of 25 people who are in my book. Their cancers are faster growing than mine (most papillary is very slow growing) and my survival rate is still very good. I may or may not have to deal with some more complicated medical hell in the future. And that scares the crap out of me. But I know I still have a good chance of living, and compared to these other patients I have come to adore, I’m down right grateful. I do not make these comparisons to force myself to feel better – again, horrible idea – but the comparisons are just happening naturally for me and result in some deep appreciation for my struggle and theirs’.
Being Myself. Who I am changes because I’m growing up, adjusting to cancer, and seeing the world differently as life moves on. How I feel now about my cancer today will not last forever. What’s easy for me to digest now may become harder, and then will become easier again. That’s why I love the mantra Everything Changes. It is just true. When I’m in an hideous headspace about my cancer, I don’t beat myself up about feeling like crap. I let it be and know that it will change. Relieving this pressure helps. Seeing a therapist can be helpful too, as can my current system of therapy: baking strawberry cobblers, talking out my fears with Shannon, renting espionage movies, and remembering that Everything Changes.
Does anyone else have advice for how to live with recurrences, incurable disease, or what to do with cancer fear in general? Have you made the shift from acute to chronic and how did you deal with it? If you have other questions for me, send them my way. I’d love to answer them.
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
July 1st, 2009 at 11:38 AM
thanks Kairol, this is great advice for anyone who is having a tough time handling cancer emotionally, even if it’s already out of your body physically; sometimes your psyche just can’t seem to let it be and go with the new flow of your life.
July 1st, 2009 at 12:04 PM
Hi Kairol,
This is so insightful. Your thoughts resonate with me not because I have incurable cancer but because in life in general.
I am great fan of your blog and wish you lots of success and postive energy.
July 1st, 2009 at 12:16 PM
I’m so so so glad you posted about this. people ask me all the time how I’m doing, and sometimes I dont think the gravity of my personal situation really hits them. Or I dont try to make it seem so dire. But I haven’t been able to fully say that i CAN cope with it. I mnea, I suppose I AM, given the fact that I’m here, functioning in daily society. But I think my personal jury’s still out on it all. Maybe my form of distraction is avoidance. I just avoid as much as possible dwelling on it even though CancerCancerCancer takes up probably 97% of my thoughts.
I think I’ve done surprisingly well at it all.
July 1st, 2009 at 1:01 PM
Kairol,
Thank you so much for responding. It actually makes me feel a little bit more… normal, w/ how I’ve been dealing with it. I think one of the biggest problems for me recently is that I’ve lost my distraction: school. Most of my time now is spent in a library trying to study and apply for jobs, which in turn just leads to thinking waaaaaaaay too much. I also feel like, probably as a side effect of the constant “recurrence,” that I’m really just waiting for the test that finally says the tumors in my neck have in fact changed enough that something can be done about them.
One last question that I forgot to ask, was how do you respond to people asking how you are. A lot of my friends and family and even just acquaintances always ask pretty directly, “how is the cancer stuff going?” Or even worse, in interviews, where its less of a question and more of an assumption, “so you’re in remission, right?” Even when you join cancer networking sites the options are: in treatment, post-treatment, remission, or know someone with cancer. Can’t I have a “limbo” option?
July 1st, 2009 at 2:05 PM
Along the line of thinking from anonymous’ comment: what the hell is NOT COPING WITH CANCER? You are so right, you are coping because you have no choice. The only other choice I can think of is maybe driving your car into a tree, and if you’ve read my book you know there are some GREAT cancer patients who have dared to consider this. I cope and sometimes it looks all glam, something I’d get a pat on the back for and a magazine article written about me for, and sometimes it involves thoughts and behaviors that others would find less than pretty - but this is my life to live and I roll with the punches regardless of how it looks to others.
So that leads me to Robin’s next great question about what do I tell others about how I’m doing. I have short simple statements ready to go, always on the tip of my tongue: “Physically I feel really good these days, but it is challenging living with the knowledge that my cancer is not curable.” Amen to the limbo option on social networking sites and surveys. And… I really want to know more about your illness on interviews. Some people can pull off bringing up cancer before the “hire” but not always. It’s cool to bring cancer into the job search process if you have a really strong reason to and an excellent way of packaging it up, otherwise, I say leave it out. Do you mention it in your cover letter? Does it relate to the jobs you are looking for? Is it the only way to explain a gap on your resume?
July 1st, 2009 at 2:58 PM
I’m going to be insanely lazy, and just redirect you to a post I made last week when I was freaking out about an interview… mainly b/c it hits all of the topics you just asked me about. In short, I threw in that I’m a member of Thyca on my resume. I didn’t talk about this in the blog but, the first time I did it… and its the only time I’ve ever actually used cancer to get something, was for a scholarship. I needed the money and I didn’t really care if the alumni association knew, and it ended up dominating my interview, as almost everyone of them knew someone with it, and I got the scholarship. And initially, I think I kept it in there sort of in hopes interviewers could put two and two together, fill in the gaps on my resume on their own, and not ask me the questions (ha). And then I’m looking at jobs w/ State Department, Peace Corps, and JAG, where you have to pass physical exams.
So yeah, here’s the post:
http://deathbylettuce.blogspot.com/2009/06/strategizing-for-job-interview-when-you.html
July 1st, 2009 at 3:32 PM
Robin, Great post you wrote about interviews. Every oncology social worker I interviewed for my book says that if cancer comes up in an interview, confidence is key. Give a quick, confident answer followed up by how the issue is resolved and move the conversation back to your strengths. In my opinion you do not need to explain to them the medical technicalities of thyca and remission. If someone asked me on a job interview if I was in remission (which maybe they are legally allowed to do since you brought up your cancer yourself? dunno?) Here is what I would say: “My care is extremely minimal, I have the highest survival rate of any kind of cancer, and it will not affect my ability to do my job. I am actually very physically fit and quite a competitive co-worker. In fact, I find that having gone through this experience makes me not sweat the small stuff, so when an emergency happens, we are on a tight deadline, or are working very long hours, I am the one who stays level headed, dives in without blinking an eye, and is able to apply myself with strong focus.” Then zip the conversation on to something else. In your blog you said you are not feeling so confident. I would then practice your answer out loud relentlessly until you start to feel confident. If you don’t have confidence in yourself, neither will they. Sorry you have all this on your plate in this challenging market! It is not easy….as you well know.
July 1st, 2009 at 8:08 PM
I have my little chunk ‘o tissue in my back that has been stable for 14 years. Do I wish it would go away, of course! After 14 years it’s my normal.
Working with survivors has helped and hurt me. I think it makes me more paranoid about my chunk-of course I would think about it if I had pain or a new/not so new symptom that recurred, but day to day I didn’t think about it before my current job. However, I’ve met many amazing people that show me different ways to cope-some good, some bad. I’m thankful that my patients teach me new ways to cope.
July 2nd, 2009 at 8:02 AM
Dunno …
Wishes
Always
“If tomorrow morning the sky falls…
have clouds for breakfast.
If night falls…
use stars for streetlights.
If you have butterflies in your stomach…
ask them into your heart.
If the clock stops…
use your own hands to tell time.
If the sun never shines again…
hold fireflies in your hands to keep warm.
If you’re afraid of the dark…
remember the night rainbow.
If there is no happy ending…
make one out of cookie dough.”
~Cooper Edens~
July 2nd, 2009 at 6:21 PM
Hi!! It´s so amazing to know people like you! Thanks to WEB I´ve found many persons (including you) who have inspired me to keep going. I was diagnosed in november 07 with astrocytoma grade 1-11 in my brain. I received surgery and radio, and It worked. Last saturday I celebrated my 50th aniversary and the must significant gift is that I´m still alive with my family! The faith moves mountains.
July 3rd, 2009 at 3:06 PM
Kairol-go ahead on and write a long post anytime you want if it’s going to be even remotely as relevant as this one. ;-)
I’m going to link it back to the Colon Club discussion boards…where a good dose of acceptance is never a bad idea. Strong thoughts, Kairol.
July 3rd, 2009 at 3:15 PM
Thanks Pat - please feel free to link to my blog anywhere you’d like! And congrats on your 50th to the comment above. I want to be standing in your shoes someday.
July 4th, 2009 at 12:28 PM
Here’s another slow growing chronic pap thyca girl to add to the club! I have tiny stable lung mets that “will likely start growing again in 10 to 20 years” according to me physician at MD Anderson. I took me about 6 months to fully digest that info. For the first three of those months it was all I could think about. I mean, where do you stick that piece of info in your brain? Then I decided to go back to living. Who knows what will happen in 10 to 20 years, but I sure as hell hope that better treatments will be available and it will be something we can handle.
I love what you said, Kairol, about expert care. My doc has no pity, confusion, or odd curiosity about my case, either. It was so nice to meet a physician who looked at me as “normal.” He has seen tons of patients in my shoes, too. Finding expert care was the BEST thing I did for myself. Traveling out of state is worth it.
Be well!
Jenn Potter
July 4th, 2009 at 12:33 PM
PS - At least there’s no more RAI in my future. I’m also refractory.
July 5th, 2009 at 9:35 AM
Sorry that you too are refractory Jenn Potter, yet, kinda nice to be in touch with someone else who gets it. I do think there is hope on the horizon for lung mets. My doc - Dr. Tuttle at Memorial Sloan Kettering, is doing research with astrazeneca on a drug for refractory papillary patients with distant mets, such as lung, and it seems to be headed in the right direction. And yes, let’s raise a glass and toast to no more RAI!
July 15th, 2009 at 10:33 AM
Hi Kairol,
I followed you here from a comment you left on “The Face of Invisible Illness” at wowowow. I’ve read all your posts down from the top until this one but haven’t replied to any before now because I’m not living with cancer. Since you opened this one up to “how to live with recurrences, incurable disease,” now’s my time to jump in. I’m 37 and have lived with CFDIS (chronic fatigue immune dysfunction syndrome) for the past 19 years. While researchers and working hard, at this time there is no known cure. I’m more functional than I was my first two years of illness (when I was almost totally bedridden) but have had progressive MS-like symptoms the past 6 years so am definately not physically coping as well as I did for a handfull of years there in the middle. While I had many “invisible” illness years, my use of a wheelchair is becoming more frequent again and I’m facing the questions that come with it.
My personal coping stategy is writing, prayer and reading my Bible where I find refreshment, comfort, and challenge to look beyond myself. My family is a small group of people I can be real with in this journey and online support encourages me that I’m not alone. Like you, finding a doctor who does not treat my case as an oddity has been refreshing! Striving to live my life to the fullest in every way my health allows me to do so is important to my mental state (and to the sanity of my family).
I’m working on a book about living victoriously with chonic illness. It may take me 10 years to get it written (this will be my second book and my first one took me that long), but it gives me a sense of purpose and fulfillment to write, an outlet for the realities of day-to-day pain. You are welcome to read a bit more of my story at http://www.HarvestingHope.blogspot.com and I’m eager to find a copy of your book. :) Very nice to meet you.