Odd girl out at the oncology officePosted: July 11, 2012 Filed under: breast cancer | Tags: cancer battle, getting back to normal after cancer, life after cancer, post-mastectomy infection, psychological effects of cancer, PTSD, survivor's guilt 31 Comments
I’ve been on hiatus from blogging but rest assured, all is well. No real reason for the hiatus other than the fullness of life. Although I’ve not been wrapped up in the hurried pace of the school year, so far summertime finds me still going & blowing as usual. Less than three weeks until our annual vacation to Salisbury Beach, though, and I will slow down then. As the sage Zac Brown says, I’ll have my toes in the water, ass in the sand, not a worry in the world, a cold beer in my hand. Can’t wait.
Yesterday was my quarterly check-up with my cutie pie oncologist. My intrepid appointment companion Amy is currently living the good life seaside on the East Coast, so I had to go it alone. She strongly suggested I reschedule, lest she miss a visit with Dr Cutie, but alas, I carried on without her. She’ll have to wait until November to lay eyes on him, as I’ve graduated to three visits a year with him. That’s my reward for being two years out from the dreaded disease: fewer oncology appointments.
Despite one fewer chance a year to gaze upon Dr Cutie as he imparts his wisdom, this is a good thing because I found myself feeling guilty sitting in the waiting room. Of the four other patients waiting for the good doctor, I was the only one with hair. The others were not only bald but quite sickly looking (and a good 20 years older than me, as well). As I perched on a chair in my workout clothes, planning to hit it hard at the gym as soon as I got the requisite visit out of the way, I was filled with a sense of guilt over my good health.
I could feel the eyes of the other patients on me, and I imagined them wondering, as I would in their shoes, what a strapping gal with a full head of hair, color in her cheeks, and a spring in her step was doing at an oncologist’s office. Had the shoe been on the other foot, I would have assumed this picture of health was meeting someone there, or perhaps had found herself in the wrong office and had not yet realized the mistake.
My guilt was somewhat assuaged by the stark recollection that there was a time, not so long ago, when I was the sickly looking one, dragging myself from one appointment to the next, consumed with healing after a double mastectomy and overwhelmed by a post-surgical infection. I remember well the days of envying the “normal” people who walked with ease and were unburdened by the pressing concerns of cancer, treatment, and their ugly fallouts. Ditto for all the days (close to 30 days all told that one summer) I spent in the hospital. Pushing my IV pole on endless loops around the hospital halls, I would gaze longingly at the healthy people out and about and wish I were among them.
Although I’m two years out from the dreaded disease (or, two years and 2 months, as Dr Cutie so astutely recited from memory), the recovery process from the infection was quite lengthy, and it’s really not been all that long since I was freed from the clutches of that wretched bug. Many times as I moved from the infectious disease team’s office in the Texas Medical Center to Dr Cutie’s office around the corner from home and to the plastic surgeon’s office halfway in between the two, I stared hard at the healthier specimens I saw along the way. I remember feelings that ranged from outright envy to smoldering anger at these people who went about their daily business the way I used to. I envisioned these people getting their kids off to school, hitting the gym, running errands, lunching with friends, and doing household chores with ease, the way I used to. I imagined the fabric of their lives being uninterrupted by cancer, the rudest of guests, and assumed that they sailed through their days focused on minor inconveniences rather than big-time medical crises. First-world problems like a cancelled hair appointment or a rained-out tennis match were screechingly replaced by real-world problems like a hole in one’s chest wall that just won’t heal and an insidious bacteria that evades treatment quite stealthily.
Was it survivor’s guilt that hit me yesterday in the doctor’s office? Perhaps. I’ve never been one to wonder “why me?” — neither in terms of the roulette wheel of whose genes will come up hinky and necessitate a diagnosis, nor in terms of why am I now healthy while so many others are sick. Seems like a colossal waste of time and energy to me. I don’t spend much time thinking back about the sheer hell I endured with that nasty infection; partly because I don’t want to go there, and partly because my brain works hard to protect me from going there. There are plenty of gory details I have to work hard to conjure up, and while my intellectual brain knows that of course I did go through all that, my sympathetic brain says let’s not rehash that ugly past and prevents me from really remembering how awful it was. Better to smile encouragingly at the other patients in the waiting room and spend a few minutes of quiet reflection on the road I’ve traveled and how far I’ve come.
This is so timely! Did you know the twitter chat on next Monday’s #bcsm is about survivor guilt? I suggest we use this blog piece as a jumping point! I know how you feel. I’m five years out and even when I was on chemo, I never lost my hair. Made me feel like I was fraudulently telling people I even had to be on chemo. That couldn’t be chemo coursing through my veins all eight times I say in that chair. I still had my hair… and I felt horrible about it.
Thank you for the info about the chat next Monday!
We’ll have to get you some Pink Underbelly cards that you can hand out in places like the oncology waiting room. I’m sure it would provide comfort for others as well as an example of the brighter future ahead.
Perhaps the others in the waiting room were feeling sorry for you. They may have thought you’d just been diagnosed or were about to be after you walked from the waiting room into Dr. Cutie’s office. No guilt, please, just gratitude.
Or perhaps they were inspired by you. “so you can be totally hot looking after cancer, awesome!”
That’s what I always think when I see healthy looking women in certain places like the oncologist or the stereoscopic radiologist…Just diagnosed or past the really bad times for at least a while.
like that line, “the fullness of life”. Don’t make a slip and call him Dr C in front of his staff…
I imagine his staff would get a kick out of hearing me refer to the doc by his nickname! But I wouldn’t want it to go to his head!
This post resonates with me on many levels. Survivor’s guilt, that’s a tough one. We can’t twist ourselves up over why me or not me. Sometimes, I think it’s more of, when will these things happen to me rather then if. It happens to so many, it must be coming for me. That’s hard, but I guess all we can do is savor the good stuff. I don’t want to look back one day and wish I had. Thanks for sharing these thoughts.
Stacey, savoring the good stuff is the best advice! Thank you for the reminder to do so.
Your post takes me back to 1996 when I was first diagnosed with cancer. Walking through the hospital’s cancer ward, I heard one of the nurses say, “You don’t look like you belong here.” I certainly didn’t FEEL like I belonged there, but there I was. Then there’s the time I pulled in to the radiation center with my convertible and the valet parkers asked me if I knew this was for patient parking only. I indignantly replied that I WAS a patient. Such stereotypes.
Who knows what is going through the minds of those in the waiting room? I’ve had feelings similar to yours of survivor guilt as I’ve waited for my six-month checkups over the years and secretly eyed the other patients.
Thanks for this post to which many of us can relate. xoxo
Oh, Jan, I just love the image of you in your convertible being scolded by the valet! That’s fantastic. As always, your comment makes me smile. xo
Pink, I cannot tell you how much it does for my soul to hear you speaking from a health perspective. Yet, the undercurrent of your dis ease is still very much present. Thank you for being so feisty. It keeps me a little bit energized, and that is no small gift.
If feisty is what you need, Mr Kramer,you have definitely come to the right place! I will happily continue spitting out sassy posts in your honor.
Thanks again for hitting my heart, gal. I am walking around the streets of Munich right now looking like the picture of health. No one sees the scars that are barely closed from the last surgery, or knows I still have stitches coming out of my skin on some, or that I have to wear a girdle because I swell so much after each surgery. They don’t see me cleaning my hotel bathroom with Hibiclens because I’m terrified of another staph infection. Went walking as fast as I could up a huge mountain in Bavaria a couple of days ago and was wondering if my implants would explode from the quick ascent. But forget that breathing machine for my collapsed lungs after the 21 hour surgery that went bad; the lungs were moving and grooving. And must have gotten back all the blood I lost too. But every time I pass someone with any kind of disability I recall being in that wheelchair a year and half ago and would like to reach out and hug them. Sometimes, especially when women look at me in that envious way some women do on days I look fairly good on the surface, or when I mention I have had cancer and see the shock on a person’s face and see their demeanor change, I think about getting a pink ribbon tattoo in a pretty visible place so that I can have a badge of honor that identifies what I have been through.
PS Here’s a tip for flying if you don’t have a lymphedema sleeve. I got some basketball shooter compression armbands at Academy and wore them. I got kid sized ones since I’m on the smaller side. Since they were black they were less noticeable with my travel clothes, and they are smooth. Seemed to work well.
I wholeheartedly endorse the tattoo idea. I designed one for Nancy, but she’s resisted the idea. Let me know if you’d like me to design one for you. Guten tag!
Danke, David. It’s probably the idea of more needles that we don’t like. 😉 I once went to a tattoo shop in Austin and I asked the guy how much it hurt– he said “depends on how much you like pain”. I told him I’d had a baby and thus found that I really wasn’t into pain. Now I can add that I’ve had my chest taken off and reconstructed and more pain really isn’t what I want. But I’m still considering “the badge”, so will keep it in mind. I’m just afraid that in 10 years the artwork will be sitting much lower than where I intended it to be. But maybe that’s okay– I will have made it 10 years! Am going to –gasp– wear a bathing suit on the beach soon, and maybe I’ll try some henna first to see how I feel about it. I’ve seen some beautiful tattoo artwork online– I love the ones with trees covering their scars.
I’ve had a few comments about how “good” I look after all the mess I’ve been through, and my reply is always the same: thanks, but it’s smoke & mirrors. Like you, I wonder how the envious women would react if they knew what we look like under the surface. That’s why projcts like The Scar Project and My Wife’s Fight with Breast Cancer are so important: they show the reality of this damn disease.
you girls carry the scars well. I’ve seen them and I can most certainly tell you that although most folks might find the scars uncomfortable to look at, I find them just that–scars. Would I ask that you have these scars? NO! Do I love you? YES! Probably in spite of them and probably because of them!
Awesome response,Amy. Thanks for giving us a “feel better” moment!
No guilt necessary! Us sickly ones leftover in the waiting room look upon you with hope. When I see healthy patients visit my doc, I am encouraged that remission is near and I will return, like you, back to the scene of the cancer crimes above it all. Thanks for an insightful post…
I remember worrying when I saw a very healthy person if they had just been diagnosed (sounds crazy, but I was more worried they were in the initial phase of discovery). I was also always happy to see happy and healthy survivors (when I would talk to others in the waiting room and hear their story). No need for guilt, it is what it is. 🙂
Just found your blog and I’m so happy I did. I only recently started my cancer journey a few weeks ago. I’m having a mastectomy on Friday and who knows what will come after that. Looking forward to reading your blog.
Blessings to you on Friday and afterward. Nancy’s blog (along with a few other shoulders to cry or lean on) has helped save my sanity– I’m so glad I found it too! I’m one and a half years out now and it has been a hard road, but getting better. Those first few weeks after diagnosis are terrifying, so much to figure out medically in so little time, and personally having to figure out who you want to tell and how much. Sounds like the doctors are moving quickly for you, like they did with me. I’m thankful for that, since I’m still here, but gosh was it hectic. I hope you have a good support system; Nancy obviously does, and I’m sure that’s helped her too.
Hi! Glad to hear you are that far out after diagnosis! Yah, it’s insane how fast things move when you get the diagnosis. It’s exhausting if anything.
Tomorrow morning is going to come too soon. Hope to chat with you more in the coming weeks.
Are you able to do reconstruction at the same time, or perhaps you are opting not to do it? I hope it all goes very well. Please update when you can– every woman who has gone through a mast will be with you in spirit.
I was able to do reconstruction…they started it at the same time as my mastectomy and were able to fill with 150 cc already. I’m single and have not had children yet, so my thoughts on wanting reconstruction were strong.
Thank you for your kind words…it has been wonderful knowing others going through this at the same time. It has been very helpful to me.
So glad to hear from you. Since you are able to type so quickly afterward, you are in much better shape than I was at that point. Go you!!! Perhaps that is the only benefit to having this crappy thing happen at your age– you are generally physically stronger. So kick it’s a##, girl. How about if I email you through your blog email so that we can keep in touch?
I feel like maybe I am progressing quickly, but I have nothing to compare it to, nor do I wish I did. LOL.
Yes, I would love to keep in touch with you..please email me at firstname.lastname@example.org. 🙂
Just found your blog off another, and will be following it. I love your writing style. I can truly relate to “survivor’s guilt,” as I often feel guilty being called a “survivor.” My DCIS was found by accident in March of this year while I was supposed to be undergoing a “prophylactic bilateral mastectomy,” to ward off the grossly high risk of breast cancer with my genetic disorder, Cowden’s Syndrome. Being only 38, and having helped my mom through a mastectomy and subsequent chemo 15 years ago, I feel often that I didn’t work hard enough to even be counted in the same league with the surviors! Keep on writing, and I’ll be sure to keep reading!
[…] – like button',unescape(String(response).replace(/+/g, " "))]); }); Pink Underbelly has an interesting post on her blog about a trip to her oncologist's office, ending with a […]