Excuse the type-os. I’m exhausted from my huge nine month check-up yesterday in New York. I’ve had cancer for nine years and I had never gone this long between appointments.
The fear started creeping up on me a few weeks ago. I tried to tame it while letting myself freak out as needed. I watched crappy movies, was moody, and ignored the world around me as best I could. Cocooning helps me.
I didn’t tell many people about my upcoming appointment. I liked not having a big build up. I know that people mean well when they tell me they’re praying for me, thinking of me, sending me good vibes. But I don’t want this kind of support anymore. And I was especially was glad to be rid of the people who tell me they know I’ll do fine. (Really?!? How the hell do you know?) It’s nice to slink into the cancer center without the pressure of anyone’s expectations.
Being hush-hush calmed me down a bit. For the first time ever, I managed not to bite off all of my fingernails; only my thumbs. Still, fear gnawed away at me. For three days leading up to the trip, every time I closed my eyes, I saw the yellow flowers from the sheets on the bed where Shannon and I stay when we are in New York. This morning, I had irrational, obsessive thoughts. I felt like I had to make my bed or else I’d get bad results. But, I didn’t want to give into this line of thinking and forced myself to leave the bed a mess.
My wait is over. I had good news. My tumors have not grown. This is a tremendous relief. I am happy, happy, happy. And now, I’m biting off my fingernails. Not because I’m anxious, but because I don’t have to hold myself together anymore. Did you hear my huge sigh of relief? It’s nice to come out of my cocoon with good news.
How do you cope with waiting? Do you ever have totally irrational or obsessive thoughts or habits when you are burdened with fear or anxiety? Do you find comfort in telling people you have an appointment coming up?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
December 18th, 2009 at 12:15 PM
Wow, Kairol - I wait in much the same way - hunkered down inside myself, trying to do self-care and beat away the negative thoughts. I also get tripped up by little “omens,” and try not to tell a bunch of people. Sometimes I even find it hard to share my concerns with my partner, with whom I am very close. I think I have this tendency to not want to give more power to my negative thoughts, even though I realize that sometimes sharing the weight of them with someone else can be very cathartic. Reading what you wrote helped me feel a little more justified in all of the ambiguity.
So glad for your good news!!!!
December 18th, 2009 at 2:06 PM
For the first year, I only had scans every 4 months. Then I had surgery and went on a chemo treatment where I had scans every 8 weeks…for 13 months. Then another surgery, another six months of bi-monthly scans, and Dr. Personality moved me out to scans every 3 months…for almost two years. Recurrence, PET/CT, new chemo & radiation, another surgery, and there I was back at scans every two months for most of 2008 and 2009.
Until August of this year - when Dr. P. suggested that I could go *four* months until my next scan. Four w-h-o-l-e months.
I didn’t think it would bother me. I’d passed the 50-scan mark a few scans ago; the CT techs at MSKCC all know me by name and veins. Most important, at some point during all those bi-monthly scans, I realized that worrying about my scan results got me nowhere, and I’d resolved to eliminate non-productiveness where I could. Cancer had already stolen so much of my time; I wasn’t going to willingly surrender a week to worry over something I couldn’t control. I gradually got to the point where I’d be completely wrapped up in my work and my schedule, and then realize - wow, I need to pack for New York.
The night before my 5 1/2 hr. train ride into NYC would be a rush of laundry, last-minute trips to the kennel to drop off the dogs and cat, cleaning out the car so I wouldn’t be leaving valuables in it while it was parked at the train station for 3-4 days. So i guess those pre-trip Friday nights were my freak-outs. Then I’d crash on the Saturday morning train, to tired to worry any more. Que sera, sera. It was out of my hands.
Until this trip.
I still don’t think I went overboard worrying - or was too moody. Then again, my family and friends might disagree. But the extra month just felt - wrong. And I was completely relieved (go out and celebrate with dinner at Boqueria relieved) when Dr. Personality came in all smiley and said, ‘things look pretty good.’ And this trip, I took an extra day in the city just for me, just to enjoy the decorations and relax a bit. I’m glad I had time to do that…but to be honest, I planned the extra day into this last trip because I was more than a little afraid that I’d *need* it - because the scan would find something.
I don’t usually tell a whole bunch of other people - my youngest brother, who lives in the city; some immediate co-workers (I’m officially ‘on VAC in NYC’); the people with whom I co-admin some (non-cancer) forums. I never post things like “Scans this weekend, please pray for me” for reasons far too long for a comment. And I don’t post good results either. I do mention scan results at my face-to-face support group (where sometimes I feel guilty; other members aren’t doing nearly as well.) But I generally try to downplay and eliminate any hoopla around my scans.
The only hoopla or announcement that I make afterwards are NED cookies - a couple of boxes of butter cookies from Wm. Greenberg’s on Madison Ave. It’s my way of letting my co-workers know - and saying thanks-for-your-support - all via those little butter cookies. And I’m pretty sure I’m not allowed back in the building after a trip to NYC unless I’ve got a couple boxes of cookies in my tote bag.
December 18th, 2009 at 8:55 PM
I’m so glad you had good news Kairol!!
I think since I skipped chemo (bad move), my onc has disowned me. I haven’t had any follow up in over 6 months. Strangely, I’d rather just keep on going on not knowing (even though that is how I got into this situation - late stage cancer with low survival odds - it’s my own f*ing fault, I ignored my symptoms for so long!). When the cancer does show up again, there’s not many treatment options left - it’ll basically be just a matter of eeking out my existence by a few months with chemo, if I choose to go down that route (not sure I will).
Hmm, maybe you could do a blog on how not to be a Christmas grinch? I’m really not getting into the whole happy holiday season, funny that…
December 18th, 2009 at 9:37 PM
I celebrate your good news with you.
I, too, tell as few people as possible. I stay busy with writing projects. Sometimes I find myself “nesting,” e.g., deep cleaning the kitchen cabinets or getting rid of the stacks of papers/journals in my study (a topic for another blog post!). And when I’m irritable, I just remind myself — or my husband reminds me — that I have an upcoming check-up, and that usually settles me down.
Happy Holidays, Kairol. With hope, Wendy
December 19th, 2009 at 9:53 AM
I have a multiple myeloma, which must be monitored every two months. Early on, I shared with others the anticipation of my visits with the oncologist. I’ve learned that, for me, discretion trumps hasty discussion of my blood cancer.
I also felt pressured by sharing the suspense. I now prefer your “hush hush” attitude. I find that awareness of my illness pervades my consciousness, yet talking about it with everyone can cause me to lose my balance. I sometimes feel like I’m defending my health from the expectations of others.
Accordingly, I take great pleasure in my support group where the understanding of living with cancer can be periodically examined. This cancer belongs to me but it is not all that I am.
I am better able to cope with the anxiety of upcoming exams if I remind myself they are part of a process. Irrationality about my cancer seems to occur mostly at night, with dreams. When I am awake, however, I can manage my fears by looking directly at the sense of dread.
Writing is very therapeutic.
December 19th, 2009 at 9:58 AM
Glad you had good news. The waiting is impossible. It can be sooo hard. I can keep it together (somewhat) throughout the year, but then when it gets close to the 6 mos check up or the evil diet/scan I just turn into a stress puppy. This is normal, don’t you think? We learn a lot of things in school- how to make friends, how to study, how to get a long in a group, but no one teaches you how to deal w/the incertainty and waiting of a bad health situation. You just do the best you can.
For me, once I get the news, the anxiety doesn’t end. I have done 3 scans now and each time I fid myself crying. The first year, I was hysterical while walking down the hall of the hospital. THis year I got to the car. Next year? Maybe I’ll make it home- ha ha?
It takes a while to come down from it. So be nice to yourself. YOu got through it! That’s such a huge accomplishment. You’ll feel better soon. PS that’s so funny about the thumb biting. Currently I am down to just the index finger on my right hand. It was all the fingers, then just thumbs and index fingers, now just the right index finger… Oy vey?
PPS I hate when people say everythign will be fine too. I’d much rather they ask how I am feeling about it or aknoldege the feeling: waiting is hard, it’s so hard… whatever. But no please don’t tell me it will be fine.
December 19th, 2009 at 1:27 PM
Thanks to all of you for celebrating my good news. I’m thrilled and exhausted to the bone. I need to write a post about post-appointments and how regardless of the news, it is always a time when I fall apart and my energy tanks. Mind you, I’m not complaining - I’m so happy. But I still feel like termites have chewed through my energy supply. Cannot get out of bed!
Anonymous, you’ve spurred me to write a few blog posts: 1. What do we do with ourselves when we have ignored symptoms or made other choices that have lead to a progression of our disease. Hard, hard stuff. 2. Holidays and cancer. Thanks for your comments and for igniting important conversations.
Kairol
December 19th, 2009 at 2:11 PM
The waiting and whole unknown part of cancer is a really hard thing to deal with. Both from a practical (ie planning treatment/resources/support..)and emotional stand point. It’s also especially annoying for me, cause my scans have never been that accurate. My cancer didnt show on some of the initial CTs and didnt show on my 1st PET, I only knew from my biopsy. So there’s extra uncertainty over whether I can trust the scan or if the cancer is hiding again. But… I just have to accept they’re accurate cause there’s nothing I can do.
Anyway, I have come up with a few things that help me a little with the waiting. I personally found I feel ALOT better knowing what my scan says ahead of time, BEFORE I see my doctor. My doctor is so quick, and I cant process the results and formulate all my questions on the fly before he runs out of the room. So… I found a loophole, where I can get my scan done.. request a copy of the results right away… pick it up a few days later, and have it before I see my doctor for the followup. I purposely book a week or so in between so I have enough time for this.
And yes, I take a deep breath and get a bit anxious as I take the results out of the envelope, but i can do it where/when I want to. For me, it’s so much better than waiting till the followup and in the waiting room for hours on end. I then can at least process it slowly on my own terms, google any terms i dont recognize, and can go in prepared, with a list of informed questions, so I don’t feel ambushed during the appointment. Even if the results are bad, this works much better for me, so i can at least plan accordingly, know if i need 2nd opinions, can already research options, etc. my last results were questionable and it helped so much for me to have it researched/thought out ahead of time. then i’m also less emotional and more focused, cause i’ve already dealt with the shock factor before the appt. I’m not sure if everyone can do this if theyre out of state. but if it was me, i’d try like hell.. the myth is your doctor has to read the results first, but it’s not true.. suppose your switching drs, then you could never get your results? it might not be for everyone, but once i started doing this , it helped me trememdously with the waiting, you feel slightly more in control.
I also tell myself mentally, “right now, i dont have cancer”.. I may in 2 weeks, or whatever, but right now i dont, so just try to enjoy that part, before the crap hits.. of course this only works so much:-) but it helps a little..
I also find my mind playing out different scenarios of what might happen and how i’d cope. ha, it seems a bit weird, but i kind of envision it, and yes sometimes, it can make things scary, but after i do it, i tend to notice, I put it away and dont think about it anymore.. maybe again, it’s a kind of planning ahead thing, if “x” happened, here’s what i’d kind of do… then i kind of forget about it as best i can, till i’m reading the results.
December 20th, 2009 at 12:59 PM
Kairol, I’m so thrilled with your good news, and apologize for not writing sooner. I’ve been coping with my own sense of overwhelm and am trying to establish some emotional boundaries.
As for how I cope with scanxiety…you know already, as I have written about this extensively…but basically I try to bring myself back to the present. “Right here, right now, all is right.” “Breathe in love, breathe out fear.” Play with Bean, watch “crappy movies”, drink good wine - but sometimes none of that works. You know.
Another mantra I love: “Whatever gets you through the night.” And fundamentally, I know that most of us get through the night, and sometimes have no idea how we’ve managed to do so.
Those are a few ramblings - but really I wrote to lend my support and send my love. I too have learned to keep my mouth shut sometimes - and I applaud your doing so!
Lori
http://www.lorihope.com
December 20th, 2009 at 3:47 PM
Anonymous (from two comments above) - Your strategies are excellent. Even if not everyone is able to work your same loopholes, you are an inspiration and reminder that we can sometimes find ways to manage stressful situations rather than having them control us entirely. Thanks! Kairol
December 20th, 2009 at 5:00 PM
Thanks Kairol! (sorry forgot to put my name last time) Your comments/blogs are always so supportive and validating. It really helps to have the encouragement. So thanks again, and I’m glad things went well for you at your last appointment.
December 20th, 2009 at 7:25 PM
Kairol! I’m so glad! :) This is fantastic news!Waiting sucks for me. I get so irritable when the time is approaching. I tell people, but I regret it as soon as I do because then I get antsy and start to vent. I get annoyed just like you do when people tell me, “Oh, Dori, you’ll be fine! Don’t worry so much.” I just look at them and want to scream, “Really?! How the hell do you know that I’ll be fine? And how can you possibly tell me not to worry?!” It’s frustrating, but I know they mean well.
As soon as the day arrives, I can’t help but get butterflies swarming through my stomach as though they’ve finally come out of hibernation and need release. I can hardly lie down on the ultrasound bed and just listen to the clicking away that my ultrasound girl does when she scans me. She checks every little thing, and I get so nerve racked when she lingers on something or calls my endocrinologist in. All the same, I am in good hands, and I know things work out okay, but it is okay to freak out and vent every now and then.
I hate telling people, but sometimes I feel like I absolutely have to tell someone how I feel or else I’ll take it out on the wrong person at the wrong time, and they won’t know what hit them. Thank God I can tell you or others from i[2]y about it so that I don’t get the stupid “You’re fine” bullshit and you can feel what I feel. It feels good to have people who understand to talk to. :)I’m so thankful for you, Kairol, and so happy for your results. This is awesome!
December 20th, 2009 at 8:32 PM
Lori -whatever gets you through the night, for sure….. if only I COULD SLEEP! darn thryoid being either hyper or hypo + perimenapause a bit on the earlier side of things…. Oy sleep. what I wouldnt give to sleep through the night. Up for hours….
December 20th, 2009 at 9:59 PM
I think that waiting is worse than treatment mentally anyway. its the unknown…. however, i do cheet a bit. i call and ask the front desk people to fax me my labs and i get a CD of my scans so i can at least look at those and have some idea of what is up.
my wife and i can tell when it is scan time….we both get mean.
December 20th, 2009 at 11:09 PM
i’m so happy for your kairol! congrats :) and thank you for your comments earlier. my doctors are very hopeful that i will be part of that 2% because of my extremely good results from the chemo and radiation i’m on. it also helps that i’m young and was in overall good health when i was diagnosed.
waiting used to be so much harder for me than it is now. i wouldn’t be able to sleep, i lived on Ativan, and i’d get mean-like steve and his wife ;)
i can handle the wait a little better now, sadly i think it’s because i get scanned so often i’ve become a little more used to waiting around for results. i also have counseling with a cancer specialist right before i see my doctor (i go every week and it just happens to be on wed which is my chemo/results day as well). this is extremely helpful as i can talk about my fears with someone who is trained to help me right before i hear the results.
i’ve also been working on the whole, living in the Now idea and find that that’s very helpful. along with hanging out with some good friends and having a glass or two of wine which i always do the night before i go in. :)
lately i’ve come to realize what has helped me as i go in to see the doctor. it’s a bit hard for me to explain but it’s something like this….
because my stats are really not good, when i go in and hear good news i’m so happy because it means i might be part of that 2% that gets to live for 5 years and i have a few years ahead of me with all of the people that i love. how amazing is that?? 2% is such a small number! and when i hear bad news, well, that’s what they told me would happen. it’s not like i didn’t know it was coming. that’s what i’ve been preparing myself for by going to counseling, reading blogs, talking about my fears with my family etc. i know i’ll be upset and depressed for a few days afterwards, but, i also know that i’ll be able to handle it when it comes down to it. i have in the past and i will in the future. and the fact that i’m doing well in that respect-preparing myself for the bad things-makes me happy and proud of myself. i don’t mean to sound like the waiting doesn’t bother me at all. it most certainly does. it sucks. i’m just able to deal with it a little better now because i don’t feel so out of control when i hear bad news.
hope for the best and prepare for the worst.
December 22nd, 2009 at 9:27 PM
So many good comments above!
I can relate with your exhaustion after your appointments. I always seem to get major stress headaches after my doctor appointments, even when I get good news. I think I get such bad headaches because I am so tense when I am anticipating my appointments.
Congratulations on the good news!