Major Surgery & the Road to Recovery

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.

Because I Promised I’d Always Openly Share My Truths

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I’m feeling a little raw tonight. When I ended the 365 Days of Carol Anne blog on December 31, 2011 I decided not to write about my health and/or assorted medical hijinks. I suppose I was a little delusional that with that declaration that the cancer journey would slow down or come to a close. When I started writing about my surgeries and my cancer I promised I’d always share my real and honest truth so tonight I share with you my real truth at the 2 year, 8 month, and 2 week mark. Things are not perfect and I’m feeling tired and a little ugly.

It’s been 2 years, 8 months, and 2 weeks since I walked into the ER on October 11, 2010. It’s been 2 years, 8 months, and 12 days since my first surgery. Since October 11, 2010 I’ve spent 20 1/2 days in the hospital and 4 1/2 days in a rehab (aka nursing home), I’ve had had 6 surgeries, 32 radiation treatments, I’ve lost count on the total of MRIs, blood work, and doctor appointments I’ve had since that day.

I’m tired, tired of feeling like I live in doctors’ offices, tired of scheduling my life around doctor appointments and medical tests, tired of being bald, tired of not being able to wear a wig and sad that my hair will never grow back. It’s been 2 years, 8 months, and 12 days and after 3 skin grafts and 1 muscle flap surgery that leaves me with limited use of my left arm there are still 2 spots on my head where the skin has yet to fully grow back. I saw the plastic surgeon on Monday and the advice is always the same, just keep babying it along, it will get better, blah, blah, blah.

I’m so grateful to be alive and to be cancer-free, but there are days when hope for better days isn’t enough. It’s hard to keep fighting, it’s hard to keep trying to be positive, and it’s hard not to feel ugly or disfigured.

On Faith & Divine Mercy

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Sunset after mass, Sunday, April 7, 2013

Today is Divine Mercy Sunday. The priest said in his sermon tonight that God meets us where we are. I’ll add that to the thoughts that have been running through my head this week.

I’ve been struggling with the deaths of several people I grew up with/went to school with, all of whom were of similar ages. In the last three years I’ve survived two major surgeries, four minor surgeries, and 32 radiation treatments. I’m a little more than one-year cancer-free and I know that it could have been me. I could have been any one of the three who died. I’m grieving for the loss of the cocoon of invincibility that youth and good health provide.

Tonight by the grace of God’s divine mercy and the power of prayer I’m alive and well and grateful for my life. I’ll work the rest out as I go.