Words

Word, words, words.  When you have Cancer, you are bombarded with words you don't want to hear.  Mass, tumor, malignant, biopsy, oncology, chemotherapy, radiation, etc.  All words with negative connotations that I never dreamed would be part of my world.  In the beginning, I couldn't handle even thinking about any of these words and how they related to me.  But then it got worse.  After my first failed surgery, a resident was standing by my bedside as I was coming out of anesthesia.  When I asked him what happened during surgery, he said, "I'm sorry, it has spread too much."  So I said, "Okay, with some chemo it could probably shrink, right?"  He said, "No, I'm very sorry, but it looked terminal."  Terminal.  TERMINAL.  I went from thinking I was having my tumor removed to being told I was TERMINAL.  That was the worst of the words that have been thrown at me.  Terminal means why bother?  It means no hope.  And it means leaving my family.  So I did what anyone would do who was still coming out of anesthesia and was told she was going to die - I flipped out.  Bad.  I started screaming for Joe and freaking out so bad I had to be sedated.  Joe called the oncologists office and asked that someone come and talk to me, so they sent one of their nurse practitioners who held my hand and told me not to give up.  She said with chemo I had some time..maybe a few years.  When I asked if I could possibly have 10 years so I could raise Zach and Sam, the chief surgeon, who was also in the room, said no, it wasn't a possibility.  I stopped listening at this point and pretended to fall asleep so they would stop saying, well, the WORDS.  But of all of them, TERMINAL stayed with me.  I remember crying to my friend Andrea that I would never know what my boys would look like as teenagers or adults.  I went home devastated and pretty much stayed that way for a couple of weeks.
When I went back to work, it was with a fake smile plastered on my face.  I didn't want to talk about everything that had happened, and I certainly didn't want to share "the words" with everyone.  But I started talking to a coworker named Linda. Although we had never really gotten to know each other well, she completely reached out to me upon my return and shared her life story with me.  She had breast cancer when her kids were young, and it spread to her liver.  She decided to do everything in her power to help herself.  She researched everything she could...visualization, meditation, Eastern medicine, as well as many other things.  She put all of these things into practice, and, well, 20-something years later is here, healthy, and a big proponent of self-healing.  After she shared her story with me, I got up the courage to tell her about my experience in the hospital.  It took forever, and a lot of tears, for me to recount the "terminal" discussion with the resident.  Linda's reaction, and her "words", changed my life.  I expected her to tell me how sorry she was that I was terminal, to ask if there was anything she could do, etc.  Instead, she said something so profound, so life-changing, that I decided I would listen to her, and not the resident. 
What she said was....wait for it...
"Yeah, well that man is an idiot."
Huh?
  "You're going to be fine.  Trust me."
What?  How could she say that?  He was a doctor, he saw my tumor.
Linda waved that discussion away when I brought it up.
"He doesn't know YOU."  She kept saying, "You're going to be fine.  I just know it." 
She said it with such conviction that I decided to believe her.  Suddenly, I felt hope and the will to fight this. She taught me how to visualize my tumor shrinking.  She told me to always tell myself I was healing, because then my mind and body would believe it.  She got me some CDs and books by Bernie Siegel, a former Yale surgeon who has studied cancer patients who have beaten the odds.  He, too, is a big proponent of using your mind to try to heal.
So, I read everything I could, and decided to combine my traditional medicine - chemotherapy- with the not-so-traditional. I visualize my tumor shrinking every night.  I pray everyday.  I try to keep "live and love" messages running through my body.  I think positive (which isn't always easy).  I have continued to go to work because it gives me purpose to my day ( and I would stress about finances if I didn't.) I have tried to adhere to a nutritional diet that some feel helps inhibit tumor growth.  It isn't easy and some days are better than others.  Lately, I have been bad!  But I'm trying to get back on track.  The diet consists of no meat except grass-fed beef (because that is high in omega-3 and low in omega-6, and acts more like fish that beef in your body), no dairy, no sugar, no coffee (waaaaaaaaaa!), lots of spinach and kale and broccoli, as well as other fruits and veggies. Lots of high omega-3 foods like salmon, tuna, walnuts.  Only whole grains.  Really, it's how we should all be eating but it isn't easy to stick to.  If you want an eye-opener about the link between food and health, watch the documentary "Forks over Knives".  I was able to watch it on Hulu.  You will never think about food the same way again.
Anyway, Linda's words, combined with the success I have had with chemo, have kept me positive so far throughout this experience, even when I've hit some bumps in the road.  The fact that they found lesions when they tried to do the second surgery was not good.  It means at some point, the cancer spread.  Probably when the tumor was more spread out, it left "seeds" along other parts of my liver as it was shrinking.  But because my main tumor has continued to shrink at such a remarkable rate, we are hoping the little ones are shrinking proportionally.  Nobody knows because they are too small to see on the CAT scan.
"Shrinkage" is probably my favorite word to hear from the doctor.  First, because I am such an adolescent at heart, I have to stifle a giggle every time they say "shrinkage" because all I can think about is George Costanza from Seinfeld.  Yes, so immature, I know, but I have to find humor where I can!  But then when I focus, I realize what a beautiful word it is because it means I have less cancer than the time before.  And I like that.  So all of these things have helped to keep me positive.
But, last week, I was confronted with a "word" that has made it very hard not to be negative.  "Denied" is what Anthem Blue Cross/Blue Shield has decided about the Proton Beam Radiation Therapy the doctors feel is best for me.  This isn't your standard radiation, and it does cost more.  But many studies are showing it is better for the patient because it is more exact and can incorporate high dosages of radiation with very little damage to surrounding tissues.  Anthem has decided it is "Investigational" and "not medically necessary."  Neither is true.   It has been used for years.  My doctor wasn't surprised, and said this often happens, and we would keep appealing, but it has sent my emotions into a tailspin.  I find myself in tears frequently lately, and I am working hard to climb back up to my positive peak.  I am afraid what this will do to the timetable we have worked out.  Tuesday is supposed to be my last chemo for awhile, followed by a CAT scan and MRI on Friday, so I can "detox" in preparation for the radiation.  Work has already posted for a long-term sub for the month of January.  I have prepared my kids for being away.  Now, all that is up in the air and I hate it.  I'm afraid that if Anthem doesn't change it's mind, it will mean getting the "second best" treatment options, which just isn't good enough when you are fighting for your life.  So, right now, while I am trying to be positive, I'm scared, pissed, and heartsick.
Imagine a world where your DOCTORS could decide what is best for you, and not your insurance company. Wouldn't that be beautiful?  But I will fight, fight, fight, them if necessary.  I have already researched people who took them on and won. I plan on using the same techniques. In the end, if I have to hire a lawyer I will.  But it sucks that I have to be worried about this.  I try very hard not to feel sorry for myself, and most days I succeed.  But please indulge me in a teeny, tiny pity party...DON'T I HAVE ENOUGH TO WORRY ABOUT WITHOUT THIS? SHOULDN'T MY EFFORTS GO TOWARD GETTING WELL??
Thank you, I feel better now.  No more whining, well, for awhile at least, I promise.
I am hoping the next word I have to share with you all comes from Anthem, and is "approved."

I'll keep you posted!