I got good news at my doctor appointment three weeks ago. I feel deeply relieved for the first time in almost a decade. I’m rid of the 2 ton weight that has long been chained to my shoulders and I’ve stopped calling my mom with 4AM panic attacks.
In Everything Changes, I interviewed Nora, a lymphoma patient, who was talking about marking her progress during chemo: “ I don’t know if I ever really celebrated any of my good news. Every time I get a good report I always feel like the hammer has just been held up a little while longer. So it’s hard to celebrate. It’s just realism actually. I’m at higher risk for infertility, heart disease, lung cancer, leukemia.”
Feeling the relief of my recent good news is a first for me. In nine years of cancer, I’ve rarely received news that merits celebration. Plus, as an uber educated patient, when I received somewhat good news, I understood that it often had a less favorable side to it. Also, I never wanted to build up my happiness only to have it shot down later. I’ll admit, I’m a pretty realistic person. Meet my family and you’ll understand. We’re loving gregarious folks, but looking on the bright side is not our forte.
Even with my recent news it has taken me a while to be able to unwind and feel it. The anxiety of waiting for scans and test results is like living in another universe. I need a reentry period. I cannot just flip a switch from scared shitless to clinking champagne glasses.
I know many patients who have worse prognoses than mine and have would have killed for my news even when it wasn’t all good. During those times when I wasn’t able to celebrate, I was still aware of how fortunate I was. I’m not big on guilt or enforced gratitude. When I couldn’t celebrate my good news, I never forced myself to by comparing myself to others. I’m always best off just being me.
I’m happy today, not because I’m a positive thinker or am trying to make the most of every moment, but because I’ve finally received news that warrants celebration. I know I could push it away out of fear. But this time, it actually makes sense to embrace it.
Have you ever received good news since your diagnosis? Do you have a hard time celebrating good news?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
January 4th, 2010 at 10:49 AM
Thanks for writing about this and congratulations on your good news. Not in my 20′s or 30′s but “young” for having prostate cancer (diagnosed at 45 - I’ve always been a bit of an overachiever…couldn’t wait until my 60′s or 70′s apparently).
I’m not sure if friends and family understand, but it is hard to celebrate each step forward. I agree with Nora’s points. Having gone through surgery, radiation and hormone therapy, I still live quarter to quarter worrying that each quarter things could change. I don’t know at what point you can start feeling it really is behind you (if you can), especially if you have to deal with some changed physical realities from treatment. For me they serve as daily reminders of what I’ve been through. I think, at least for me, that life’s realities (work, children, etc) does push us forward some to keep us from dwelling too much on worries and concerns that, in truth, we have little control over.
One thing that does make the celebrating/not celebrating difficult is that while people are well meaning, it is tiresome when because of their fears, anxieties, and yet honest concern, they “decide” you’re cured and you should stop worrying. At best it’s amusing and at worst annoying and not helpful in the least. Amusing because, apparently, so many friends, unbeknownst to us, are medical experts. Annoying, because in those moments when you do feel that “hammer being lifted briefly” their response, more often than not, is “I KNEW things were fine…when are you going to stop worrying?”.
January 4th, 2010 at 2:00 PM
Kairol!
I literally just came back from the doctor’s when I read your post. I went in for laryngitis, a sore throat, expecting an antibiotic, maybe a pain killer and on my way. Instead, I discovered that what I thought was scar tissue from last year’s surgery (I asked the doc to check out my old incision)is actually a hernia! Well that one blindsided me! I actually let my guard down, dammit!!! (don’t tell my mom, btw - I can’t keep bugging her with this stuff! :))
So, yes, my family loves hearing what they consider good news at doctors appointments. “See you in 6 months” can certainly be interpreted that way. Me? I’m always waiting for the other shoe (or the hammer) to come down. You can call me a survivor or healthy or whatever label you want, but to me, I know I still have cancer in my body (which I do) and I know that I have a real uphill head trip fight with myself ahead to convince myself that I can continue a “normal” life where cancer is not the main focus of the day…
Smile, girl! You got good news! But it can never erase all the crap that you have been through. Those of us who have had our own journeys totally get it. It’s still good news, though!
January 4th, 2010 at 2:15 PM
Marci - I am so sorry that nasty medical news has reared its ugly head again. You’ve been through way too much already!
In both of the two comments above, it is interesting to me the mention of families/friends and how they respond to the news.
My family members are smart people, but some of them really don’t always understand the nuances of my disease. They too want to latch on to good news and shower me with “congrats” that I often cannot meet with a wholehearted “thanks!”. One reason I have been more hush-hush and not telling my extended family members about my appointments is because it is just the loneliest feeling in the world to have people celebrating news that I myself am not super thrilled about.
Hang in there all!
Kairol
January 4th, 2010 at 4:50 PM
Thrilled to hear that you’ve had some good news. I am with you, I am not exactly a glass half full kind of girl and I’ve had difficulty celebrating as well.
I wonder if it is because we now know that all it takes is one cell that got missed and it could all start again.
I’m gonna miss you on the Stupid Cancer Show, what’s new in your plans?
Kate
January 4th, 2010 at 9:30 PM
I totally agree with the first comment. Friends and family who’ve never experienced serious illness or received a life threatening diagnosis can quite simply NEVER understand what you go through.
I’m short on good news to celebrate - I haven’t had any since I was diagnosed. I guess if I was so minded, I could ‘celebrate’ being alive in the here and now but that’s not good enough for me. Like all my friends and anyone my age (early 30s), I deserve to be able to look forward to another 40-50 years of health and happiness. I don’t have that future anymore and quite honestly, even thinking a week ahead freaks me out. I never realised how much I took ‘growing old’ for granted before all this, or how important being able to set goals and plan for the future was to me. Guess that old saying ‘you don’t know what you’ve got until it’s gone’ really is true…
In respect of the expectation many friends and family members hold that after treatment, you’ll just go back to ‘normal’, it’s all ‘over’ and life just continues as it did before…well in their minds, it’s easy for them to think that. They’re not the ones who have to see the scars every single day, deal with a body that has been drastically altered by extensive, life altering surgery or cope with the constant ‘what ifs’ and worry about recurrence or how fast its spreading. The fact that most cancers have at least a 5 year NED period before you’re considered ‘cured’ doesn’t even enter into their minds. It’s easy for them to move on, they’ve got their own lives and you’re expected to suck it up, hide your pain and anxiety and pretend everything’s ok because good forbid you complain (I got told to go see a counsellor the one time I honestly answered a friend’s ‘how are you?’). That’s how I feel anyway…
January 4th, 2010 at 10:47 PM
Dear Kairol,
When I look back, I see how my perspective on celebrating has evolved over the 19+ years since my diagnosis. And whether it’s because I’m used to the uncertainty, too focused on the good things in my life, and/or too tired to worry about tomorrow, nowadays I find it very easy to celebrate anything.
As I emphasize in all my writing, each person has to find the path that works for them at the moment. If you don’t feel like celebrating, it makes it worse to think you are supposed to be clinking glasses with joy.
I rarely tell anyone outside my nuclear family when I have a doctors’ appts for routine checkups or to evaluate worrisome symptoms. If I need support, I’ll tell one (or maybe two) friends. This way, I don’t have to use energy taking care of others’ needs regarding my health.
Your readers might enjoy this article on dealing with uncertainty: http://tinyurl.com/yl46h9q
Cheers!
With hope, Wendy
January 4th, 2010 at 11:54 PM
Unlike others, I am a celebrater! We were waiting for biopsy results to determine whether I had Hodgkins — highly treatable — or some sort of carcinoma — manageable at best. When the results came in for Hodgkins, I did a little dance. When I had my first clean PET, I celebrated. I anticipated my final chemo for weeks and had a little dinner party that night, though I was exhausted (being post-chemo and all). I celebrated the end of radiation. I celebrated a year in remission and two years in remission. When things swing the other way, I deal with it. It might be worse because I have farther to fall, but I’m not going to blow off happiness just in case there is sadness around the corner.
There is always sadness lurking around the corner, cancer or none, and there’s no way I’m going to let the “what-ifs” run my life.
January 5th, 2010 at 12:04 AM
Wendy and H Lee D - I’m so glad to see that we are not all half-glass empty’ers around here. We need you!
Kairol
January 5th, 2010 at 4:07 PM
Although thankful and appreciative of news of supposed remission, cause I always am aware it could be worse, it is kind of a bittersweet thing for me, mainly because I still feel quite sick/debilitated, which is due in part to other health issues that have yet to be treated. Doctors/medical staff will try to act so overly joyful, like aren’t you so happy you seem to be in remission? And of course, the answer is yes, I feel that’s a given. But it’s hard for me to run around clicking my heels, cause I feel the sickest I’ve ever felt in my life, so I don’t get to go out there and live life the way I want to, the way they tell me most people get to who are in remission(though I know not all) before the cancer comes back, or if it comes back at all.
Also, from the beginning, my scans were inaccurate and didn’t show all the cancer. So it’s hard for me to fully trust if I’m really in remission, or if my scans just look negative, like they did when I had active cancer. I’m working on trying to just trust it, cause what else can you do. And I do remind myself, seeing nothing is still better than seeing something. But unfortunately, doubt creeps in, especially since I still don’t feel well..
In addition, after my last scan, a small mass showed up in the same area as one of my original masses, as looking a little bigger/brighter. Apparently it can be a benign condition, where your thymus gland gets bigger in response to having had chemo.. or it could be cancer.. they cant tell and is a “watch & wait” kind of thing. The drs said it’s most likely not cancer, cause statistically, odds should be on my side for my treatment to have worked.. Now as glad as I am that statistics are in my favor, and rather have that on my side than not, I unfortunately always tend to be in the weird statistical minority in life, so I cant say I’m 100% comforted by this. Again,grateful/hopeful, but can’t say I’m going to go overboard and do cartwheels.
So I was kind of bothered/uncomfortable when one of my oncologists saw me and said all happily that she saw my scan and it looked great, no cancer. 1st, that may not be 100% true, 2nd, I know it’s silly, and I’m really not that superstitious, but I feel counting chickens before they hatch is kinda jinxing things, and 3rd, I still feel awful, so again hard to be overly ecstatic, when I still cant function like a normal person and do the things I want to in life.
So I guess I tend to just quietly embrace the good, appreciate, be thankful for it, but don’t make a big deal and am not overly celebratory. If I ever felt better, where I could live life and do what I want to do without feeling so sick all the time, ha, then…yes, a celebration would be in order, and I would probably be overly giddy with excitement… ha, and though probably a bit scared something would happen to take it away;-) I’d try to embrace the same kind of philosphy as H Lee D described, and forget the “what ifs” and just enjoy the ride while you can.
January 6th, 2010 at 1:55 AM
This post is the perfect one for me to read today. I was just diagnosed with Thyroid cancer in November, had my thyroidectomy and a bunch of lymph nodes out and am in the treatment phase. I have been feeling, physically, great. No side effects really yet (a little less sharp than I used to be, but overall I feel good). I was starting to stop worrying, even though I knew I was waiting some test results. Remember, I’m knew at this cancer thing. Anyway, I got some not great news and I felt crushed. Looking back on my initial reaction it was so strong because I finally let myself give in to feeling good and that I would not have to go through any more treatment… ever. Ha! I can laugh now because it has been some hours later and I’m realizing that this is for the rest of my life. I will never be cured.
Now I am trying to figure out how to get to a place that takes things as they come. Allow myself to feel whatever I feel, but don’t dwell on any one thing for too long. I want to make peace with myself, or at least that’s how it feels to me. In short, loose the expectations.
Thank you for your blog! I’m also going to check out your book.
January 6th, 2010 at 2:37 AM
Hi Christie -
I too am glad you found my blog and book. It sounds like you have a challenging case of thyroid cancer. If you ever have any thyroid cancer questions, please feel free to shoot me an email (my address is on the contact page of this blog). I’ve been around the block and back again with a pretty stubborn case of it too.
Hang in there!
Kairol
January 7th, 2010 at 4:26 PM
well it gets hard to celebrate any good news. my doc’s were preparng me to die. This are the stats and you should be out in 10 months. Sorry.
sucks cause they spend time preparing you to die that when they say you might be teh 1 in a million to beat it, you don’t know what to do..
they have you so ready to die…..they you don’t know how to live…
January 10th, 2010 at 11:55 AM
Kairol - So glad to hear you had good news recently, and that you’re letting yourself feel relief now. I totally agree with everyone’s comments here. I love that everyone here “gets it” that sometimes despite supposedly good news, it’s not always easy to see the glass as overbrimming like how most friends and family do. Not sure if it’s just their way of trying to help you “move on” but it does seem like whenever there is good news and you share it, others seem to think OK, it’s all over and congratulations, you’re done with that whole cancer thing. We who are going through it or have been there, all know that no matter HOW good the prognosis may be, no case is for certain, and you never know if you may have a recurrence down the line or not. I’ve had to continually try to put more of my faith in God than ever before, since my thyroid CA diagnosis, even knowing the good prognosis.