Major Surgery & the Road to Recovery

Crying Uncle

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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.

NaBloPoMo Day 26 — 3 Years Gone & I Am Still Not Whole

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I saw that a fellow blogger also wrote about this article today.

http://gawker.com/positivity-is-bullshit-when-you-have-cancer-1469975747

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.

NaBloPoMo Day 9 — Thankful for Xanax & a Good IV Stick (or, If you need help, ask for help)

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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.

Life After Cancer: A Fender Bender

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I know, I know, I’m supposed to be off of the Internet for a month. Well I interrupt this regularly scheduled experiment with a (quite literal) bump in the road.

We were in fender bender this morning, well yesterday morning by now. It was a minor accident, we were hit from behind at a red light. But because I have a titanium mesh plate in my head, had a blood clot in my brain after that surgery, a TIA from that blood clot and have had multiple skin grafts and 32 radiation treatments I decided a trip to the ER was warranted when I could not get my neurosurgeon on the phone and he was not in his office. I was scared to death the jarring from the accident could have caused damage to the plate.

No airbags were deployed and I didn’t hit my head or anything like that but I didn’t know if the force of the accident could possibly move or jar the plate. I knew I felt fine but there have been so many set backs and so many unexpected twists have popped up during this journey that I didn’t really know how to feel and I didn’t want to take any chances. As someone else who has experienced and lived with cancer said, minor doesn’t really mean anything when you’ve found yourself on the wrong side of the odds. I was terrified they’d find something wrong and I’d end up back in the hospital again for something I thought was minor.

Thanks be to God, I didn’t need a CAT scan or MRI. All of my neurological tests/reflexes were fine and we were out of the ER in less than 2 hours, which has to be some sort of land speed record for ER visits.

We are both fine, I’m sure we’ll be sore later but for tonight I find myself fighting anxiety and feeling blessed that the accident was minor.