I’d like to share a bit of advice with you all tonight…
Please don’t feed the bears and please don’t make the badly scarred and bald woman feel (more) uncomfortable (than she is).
I just must attract people, odd people. That’s all there is to it. I’ve had two uncomfortable experiences over the past two weeks and I was polite to both people when I really didn’t want to be.
Last Thursday at the home, dad’s social worker asked me where I got the tattoo. I don’t have a tattoo but I knew what he was talking about because he’d just walked up from behind me so I knew he meant my scar. I had surgery in December 2011 to take my Trapezius muscle from my back and turn it upside to put on my head to cover a hole the radiation wore in the new skin on my head. It left a pretty gnarly scar that makes me feel deformed and maimed. So I’m less than receptive to conversations about my scar from strangers who walk up and glibly ask me stupid shit like, “Where’d you get the tattoo?” He had a pronounced limp, I didn’t walk up to him at any point during dad’s stay and say, “Dude! Where’d you get that limp?”
Then today we were eating lunch at the diner after my doctor appointment and an older woman walked up to me and asked me if I was in chemo. I told her no and went back to eating because I sort of wanted the conversation to end there but she went on to tell me about this local hairdresser, Martino who gives away wigs. I politely told her I knew about him and again hoped she’d go on her merry way but she continued talking, telling me she’d had breast cancer and lung cancer and that she’s a two time survivor. I offered niceties and went back to eating and still she continued on asking me about my cancer, wrongly assuming that I have breast cancer because of my pink scarf. I told her a brief version of my story and said I was two years cancer-free (and I just know she was dying to ask me how I’m still bald if I’m two years cancer-free) before she finally left our table but not before grabbing my shoulder and saying, “God bless you.” The “God bless you” was what sent the whole thing over the edge, I don’t want to feel pitied and she was the second person to do it in two weeks. The social worker said to me as he was walking away, “Wow, you do good for being here all day [after having had brain surgery.]” ß the part in brackets was implied by the look in his eyes.
Now I know the social worker didn’t mean any harm and I know the woman today just wanted to let me know where to get a free wig but I don’t want to be a circus animal (I don’t like to be on display on my very best days) and I don’t want to be the cancer patient poster child. Sometimes I want to sit down and eat lunch with my husband and not be reminded that I’m bald or of what I’ve survived and sometimes I want to stand on the porch with my father and not be reminded that I’m hideously scarred.
It’s hard to feel normal or have a sense of normalcy when you wake up every morning bald and badly scarred so please don’t walk up out of the clear blue sky and ask someone about their scars or their bald head. Those are conversations to be had in the right setting when the mood/energy is right. My reality is there every time I look in the mirror so please don’t feel it’s okay to bring it up just because you want to know or feel like talking.
PLEASE NOTE: Close friends and family this does not include you. If you want to sit down and ask me about how it feels to be bald and scarred and you’re not afraid of a few tears I’m an open book as anyone who has ever read my blog knows.
I know people mean well and so they say that scars add character or scars fade (some don’t) or it’s better to be scarred than have cancer. I know they all mean well and that no one knows the exact right thing to say but no one but me has to look in the mirror. This is my 7th surgery over the past 4 years and from those 7 surgeries I’ve lost my hair, the ability to wear a wig, the full use of my left shoulder, and have now gained a big noticeable scar right there in the middle of my face. I’ve lost so much and so much damage has been done to me, it’s overwhelming.
I’m so grateful to God to be cancer-free and the rational me knows appearances shouldn’t matter in the grand scheme of things but yesterday, which I thought would be nothing, was my undoing. I accepted waking up with no hair, I accepted in order to help my head heal I’d have to lose some use of my arm, I accept the radiation treatments that saved my life also damaged my skin and I will probably never be fully healed, I accepted that my nose would have a scar from the first Mohs surgery. How much more am I supposed to just accept and be okay with?
Why is this happening to me? To whoever I’ve wronged or for whatever I’ve done to fuck up my karma so bad, I’m sorry. I’m crying uncle. For whatever it is that I have done, you’ve successfully punished me. I am broken. Please stop.
I saw that a fellow blogger also wrote about this article today.
I think another misconception the media sells is the mistaken idea that once your treatments are over you’re perfectly healthy again — you’re not. You see these Cancer Center commercials and they show this man walking out ringing a bell after his last treatment, it looks like a parade. Parenthood’s storyline this year is Kristina Braverman running for mayor of Berkley just 1 year after surviving breast cancer, brave, radiant, hair all grown back and perfect.
I blogged my way through surgery and cancer and radiation treatments, I told myself I just had to be brave and think positive, I just had to face each day head-on to make it because that’s what you see on TV, brave radiant cancer warriors, inspiring men, women, and God help us children.
What they don’t show you are the down days, the days when the radiation machine is broken pushing your end date ever further from reach or the days when you have that first MRI and there’s something there but they don’t know what and your neurosurgeon walks out of the room leaving you weeping with the words, “Don’t let this affect your life.”
They also don’t talk much about radiation treatments. Hell, even I said to myself upon learning that I’d have radiation and not chemo, “Well I’m getting off easy it’s the easy cancer treatment.” 3 skin grafts and a muscle flap surgery later there are still areas of skin that have not grown back on my head, which keep me from keeping wearing a wig. The skin still healing from the first 2 skin grafts was damaged by the radiation.
They don’t show people telling you, “Oh you have the good cancer” or the asshole asking, “When is your hair going to grow back? Oh, it’s not? Well then when are you going to start wearing a wig?” As if it is somehow his business and I somehow offend him by wearing a scarf.
They don’t show you the endless scans and follow-ups and the overwhelming all-consuming fear every time you have a scan. Will it come back? Is this the time? Am I living on borrowed time? When will my number come up? 5 years is the supposed benchmark for survivorship but I can think of plenty of people who’ve had it come back many many years later, which leaves me to wonder if I’ll ever be safe.
After cancer treatments end and we’re “cured” society and the media somehow expect us to be radiant, baptized by the fire, saved and counting our many blessings. It’s true the strongest steel is forged in fire but I don’t think you’ll find a great many jubilant steel beams.
I am grateful for my life, and I hope and pray I never have to live through cancer again and I looked for answers and as to what the universe was trying to teach me but when I see pieces like this it just pisses me off. They should do a reality show, The Cancer Diaries and film cancer patients’ day-to-day lives. I think the world would see that most of us are not always negative nor are we always positive — Is anybody? — and that all of us are just trying to get through each day as intact as humanly possible.
I’m late again. It seems like I’ve been late a lot this week. I’ll do better and work on that this coming week.
I’m late today because I had my neck and soft tissue MRI today. This is the first of two MRIs I have to check for any recurrence of cancer or any new cancer. My brain MRI is scheduled for next week.
I’m at the stage now that the follow up MRIs are now every year. This is the first time since this all began three years ago that I’ve had an entire year between MRIs and I have to tell you that surprisingly enough it’s less scary when they are every 3 months. They get to be old hat and you become an old pro at it. Having the whole year between MRIs somehow made this experience more anxiety inducing.
I’m really claustrophobic but I’ve gotten pretty good at dealing with that part of the experience. What I haven’t gotten good at is the traumatic experience of having the IV for the gadolinium inserted in my arm. I’m not afraid of needles, I’ve never been afraid of needles not even before I got sick. And I’ve had plenty of IVs in the past three years so IVs don’t scare me either. But IVs at the MRI place? They scare me.
My oncologist likes the place where I go and she likes for me to keep going there because they can compare the MRIs from the last time to the newest one. So I continue to go back even though I feel the MRI techs need to be better trained on how to do an IV and I think that it’s incredibly stupid that they only have nurses on duty to start IVs during the week. With the sheer amount of medical appointments my husband has to take time off from work to take me to on weekdays, available weekend appointments are a must so I take my chances with MRI techs starting my IVs for the contrast.
Last December the MRI tech blew my vein and got the gadolinium under my skin. This is called an infiltration and it causes the vein and in my case some of the veins around it to swell. It hurts pretty bad and it’s kind of scary knowing that you’ve got gadolinium under your skin and swollen veins. So I was very anxious in the days and weeks before today’s MRI. I’d already made up my mind that there was no way I’d allow that MRI tech to start my IV and if there was no one else available I’d just leave and make another appointment for where he wasn’t there. I couldn’t go through that again.
Thankfully he wasn’t there and the woman who was my MRI tech this time around did a great job with the IV. In fact, she was so good we made the decision that I should go back when she’s on duty again, which means going on a weekday but the hubs said he’d take the time off so that I’d have a good IV rather than worry about another infiltration.
Because I am claustrophobic and because of the intense fear of the IV stick this time around I had an honest discussion with my primary doctor earlier this year. I told him the Xanax I was taking for last year’s MRIs didn’t seem to be helping during the actual MRI and then I’d sleep all afternoon. I told him that I’d tried taking it an hour before the MRI and that I’d tried taking it right before I went in and both times I was still very nervous during the test and then slept all afternoon, which I’m of course not afraid of. I didn’t need to sleep the afternoon away I just needed to be relaxed during the 40-45 minutes or so of the MRIs.
We had a good honest discussion that the lower dose probably wasn’t working for me and so he upped it to the next higher dosage and instructed me to take 1 pill an hour before the scheduled time of the MRI and then to take another on the ride over. (I don’t drive so don’t try this at home if you’re driving yourself to your MRI appointment.) And it worked. I wasn’t intensely anxious and I was so relaxed during the IV stick that it may have contributed to the MRI tech having and easier time of it since my body wasn’t so tensed up this time.
You know I was always opposed to taking tranquilizers or sleeping pills or nerve pills. Not for everyone, just for me. I don’t ever want to be dependent on anything and I think those sorts of pills alter your brain chemistry. And then a few years ago I had a run in with my neurosurgeon, who made me feel like a junkie for asking for 2 Xanax for my upcoming MRIs. So for a while I felt gun shy about asking for Xanax (or anything) to help me get through my MRIs and so I toughed them out without anything. But in the course of things my one primary doc left the practice and was replaced by my current primary doc, with whom I feel decidedly more comfortable.
He’s the one who prescribed the lower dose that I took during last year’s MRI and he’s the one with whom I was able to have the discussion about the lower dose not really working for me and whether or not it was actually the dose or if I was taking it incorrectly. You know there’s a part of me that still doesn’t like the idea of needing the Xanax to get through the MRIs but after today I think I’m starting to understand that there is no shame in needing help to get through the scary stuff, it made a world of difference. I still slept all afternoon but to not feel that intense fear today was really a gift from God.
I’m even considering talking to my primary doctor about my lifelong sleeping problems when I see him again in December. I’ve never had eight hours of sleep in my life and I’ve never once told a doctor about it because I figured it was what it was and because I didn’t want to be dependent on sleeping pills to sleep. I’m still not convinced I want to be dependent on sleeping pills to sleep on a daily basis but I think I’ll have the discussion and see where we go from there.
And as I’ve always said during this journey I want to tell you my truth as honestly and freely as I can. If you feel like you cannot talk to your doctor about your medical needs, you need a new doctor. This is what I learned this year. And, I can and have gotten through the MRIs without any sort of medication but I have to tell you that they seem so much longer and I had so much more trouble not moving, which creates motion fragments or something that sounds like that, in the results.
I’m not advocating you run right out and get yourself a prescription for Xanax, but what I am saying is this; if you need help, ask for help. What helped me might not help you but you’re worth taking the time to ask about a solution and it’s not weakness to need help getting through scary medical tests.