Monday, August 26, 2013

Thoughts after a regular MRI of the head/neck

Lilies
Lilies
I was able to skip last year's 'annual' MRI, but the doctor stressed that I should get one this year, so I did. Since adenoid cystic carcinoma generally comes back in other areas (lung, liver, bone), I haven't been too worried about something cropping up in the original tumor site (my left cheek, remember?). That may be my faith in the voodoo that is modern day radiation therapy, or just blind cussedness - your call.
Anyway, as I spent an hour in an MRI tube, I wondered again what is going on during the scan that makes that terrible racket. I located this description on How Stuff Works, and share it here in case you too have wondered.
Tips that I can share after spending time in about 10 MRIs since the cancer diagnosis in 2006:

  • Ask for a washcloth to put over your eyes (helps keep down the claustrophobia feelings - if I can't see it, it isn't there). Works for horses being led out of a burning barn, too. Just saying.
  • If anxiety is an issue (ahem, yes, because generally fears of returning or existent cancer are floating through your head while you are in the scan), let health professionals know before your scan day so you can get medication to help get you through the procedure. I have not had to ask for this, but I know it is available for the time when I would need to.
  • Trust your professionals that get you set up for the scan - they know what you are doing. Ask for updates over the speaker, if that will help you. Or ask that they don't give you updates, if you would rather zone out during the hour-plus that you are being scanned. You are never alone while being scanned - they give you a button to push if you need help, and they can talk to you and hear you during the scan.
  • Earplugs - bring your own, or ask for theirs. Do not skip earplugs - trust me.
  • Forget anything you ever saw on a TV show about some actor in a drama getting an MRI. Your scan will probably be set up differently. Mine involves a lot of padding around my face and a frame to hold my head in one place - haven't ever seen it, since I have the magic washcloth over my eyes, so it doesn't matter (but they never show that kind of set up on TV, huh.) Your mileage may vary.
  • If you think you might be too wound up (or too relaxed due to medication) to correctly fill out your paperwork the day of your scan, and you are close to the medical center, go earlier and fill out the paperwork when sober/less-stressed. (Ask if this is possible where you get scanned - it is for me.) It will be one less thing to think about the day of the scan. I keep hoping that the electronic patient record eliminates this step, but for some reason it hasn't yet where I get care. (I secretly think that this is their test of my mental abilities - "let's see if she puts down that appendectomy in the correct year THIS time...")
  • Ask if you can get a digital copy of your scan. I have requested this before (didn't yet on this one), and found it pretty fascinating to see the scans of my head/neck scroll by on my desktop computer. 
  • A really nice thing - a friend texted that they were thinking of me while I was in the scan, so their text was the first thing I saw when I got back to the dressing room to reconnect with real life. Really, really great thing to do.
  • Finally, the best thing I did for myself today was to take the whole day off. I was able to put the scan memories out of my head with wonderful time together with Dear Husband, and talking with my beautiful Mom. Doing what really mattered lessened the scan's impact on my day and regular life. 
I should find out scan results during my upcoming annual visit with the doctor. Not too concerned - if it is positive, I will deal with it. If it is NED (no evident disease), I will continue on my current path. Right now, it is all like a Schroedinger's cat paradox.

Thursday, August 08, 2013

Treatment side effects for Adenoid Cystic Carcinoma:Trismus

origami virus
Origami
Trismus - when the jaw muscles contract and you can't "open wide". According to the Merriam-Webster, "spasm of the muscles of mastication resulting from any of various abnormal conditions or diseases (as tetanus)." So, also known as 'lockjaw'. My experience with it is because of the initial surgery on my cheek, as well as the follow-up treatment regimen of radiation. Both have injured my jaw muscles (though my family doubts that, since I still talk a LOT.) To keep the muscles flexible, I have a stack of 16 tongue depressors that I chew on. Check with your doctor and/or physical therapist for whatever method they want you to use. The Oral Cancer Foundation has this page on Trismus, its causes, and methods to keep it at bay: http://www.oralcancerfoundation.org/dental/trismus.htm.

People that haven't had cancer treatment also can face trismus. If you can open your mouth and put three fingers vertically in between your top and bottom teeth, you probably don't have anything to worry about. If you can't, check with your health care provider about what the cause might be and how to fight it. 




Saturday, August 03, 2013

Be open to life and love

I saw this story in the news yesterday, and figured I would share it:

The Ghosts of Ovarian Cancer http://www.washingtonpost.com/blogs/she-the-people/wp/2013/07/30/the-ghosts-of-ovarian-cancer/

The author, Donna Trussell (her new blog), talks about her perspective on cancer in her life, 12 years after a diagnosis and initial treatment. She has lived longer since diagnosis than many. And she talks about how she felt about cancer:

"How did a debilitating, life-threatening disease become a journey, an adventure, a mystical calling? I suggest we demote cancer to what it really is: proof of our human frailty. Survivors go on with their lives despite cancer, not because of it."

I also love her comment when facing a questionable result in a recent check up:

"“Let’s think positive,” the nurse said. “Oh yes,” I said, “because that works so well.” My sarcasm made us both laugh."

I have heard health care professionals, my colleagues, and my own family say that about 'thinking positive', and I react the same way, with total sarcasm. Thinking a certain way doesn't cause nor fights off cancer - sorry to tell you that. Also, if you are over the age of 6, we can meet and discuss Santa.

Her final line in the story: "But with cancer, you never really go home." Yep, that pretty much says it all. At the same time, though, I can say that I have created a new home, and have been pretty strong about what I invite into that home to be with me. I don't stew about cancer all the time - didn't even when I was going through active treatment. Somehow, I held on to whatever "I" am, and kept it going, despite all the crud I went through, and still occasionally go through. The only thing I hope for is that the "I" hangs around, no matter what else I have to face. 

Since this is a slow cancer (or I have a slow version of it, whichever), I could just as easily expire due to another biological or accidental reason, same as I had going before a cancer diagnosis. The odds of Adenoid Cystic Carcinoma putting me in the grave will increase whenever the mets get big enough to warrant attention again, but until then, I figure I still need to watch out for speeding busses, tornadoes, and cardiovascular disease. 

I have changed how I see my life span, though. Whenever the financial folks are consulted, I generally tell them to pretend I am ten years older, so they will shorten their predictions on what my work-life might include. Also, I make choices to stay closer to what I value, including family time, quality of life, and work-life balance. After staring at the end of things, I never want to forget what really counts as I dive back into the 'living' side of life. 
 
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