Saturday, November 24, 2012

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!

Monday, October 29, 2012

What I have learned...

What I have learned from having cancer...

I know a woman who beat cancer twice.  She is the most spiritual, giving person I have ever met.  One thing she told me was that she has come to view having  had cancer as a gift, because it taught her so many things about life.  She considers her bouts with cancer to be positive experiences that shaped her life.

She is obviously a better person than I am.

I know one thing for sure:  I will never, NEVER be glad I had cancer.  Even if I live to be 100, I will never consider it a blessing in disguise. Because, although I have learned many things from this experience, and some of them have been positive, the scary, horrible, soul-sucking times will never disappear from my memory.  I will never forget the nights I have curled up next to one of my sleeping boys, crying, whispering promises that I will fight, or apologies for what I am about to put them through.  The gut-wrenching fear of wondering whether they will grow up motherless is seared in my brain.  It is a pain that I can't ever forget.  So no, I will never be able to say that having cancer was a positive thing.  But I'd be a fool if I didn't try to learn something from this; if I didn't embrace some of the incredibly positive things that have come from going through this.Which, my friends, is different than viewing cancer as a positive...it is the enemy, and always will be.

So, here is what I have learned so far...and I know this is a work in progress!

First of all, I married the right man.  Period.  Well, actually, Exclamation point!  From the beginning he has been my strength, my positive energy, and my biggest champion.  His belief that I will overcome this has never wavered, and he has pulled me out of my deep old pits many times.  Joey is my rock, my best friend, my soulmate.  Yup, I definitely married the right man.

Secondly, wonderful, generous, kind-hearted souls are all around us.  I never realized how many truly amazing people I have in my life.  It is unbelievable. When I think of all of the people who have stepped forward to embrace me during this time, I can't help but cry.  First, there are my friends.  They have rallied around me and let me know I am never alone in this.  I always have an ear to listen,  a shoulder to cry on, or a hand to hold when I need it.  They call, text, pop in, or shoot me emails to check in all the time.  They drive me to chemo, make me dinner, watch my kids, and just generally make me realize how lucky I am to have them in my life.  They are the true definition of friends...and you know who you are!
Then there are the people from my church...Church of Christ, Congregational of Newington.  When Joe and I decided we wanted to belong to a church about 6 years ago,  we "church shopped."  We had very specific ideas of what we wanted for us and our kids...a place that welcomes everyone, that holds the same beliefs that we do about equality for all, and a place that would help us teach our children compassion, community involvement, and give them a sense of belonging.  Well, let me tell you, we picked the right place!  I never dreamed I would form so many friendships with so many awesome people.  And through this nightmare our church has given me light and hope.  From the start, I was bombarded with cards and well wishes.  A prayer shawl was sent over to help me find comfort during those first, incredibly scary weeks.  Someone set up a MealTrain for us...so every Tuesday and Thursday night somebody cooks dinner for us.  It was something I fought against at first.  I kept telling our minister it wasn't necessary, that I felt okay.  I was embarrassed to have so much help.  But she convinced me that people wanted to do something for us and this gave them a way to help.  As I have become more and more tired from the chemo, it has literally been a Godsend!  I don't know what I would do without all of these wonderful people.
And finally, there are the people I work with.  I have always loved where I work...McGee Middle School.  You will not find a finer group of people anywhere.  I have always felt that way, but they have confirmed it for me these last few months.  My special ed. department chipped in and bought me an IPad 3 to keep me occupied during chemo. Can you imagine??  The ladies of the building put together a basket of their favorite books for me to read.  I have been given gift cards, restaurant cards, and they have even collected gas money to help with my numerous treks to Boston.  How amazing is all of that???  In addition, there are the daily well-wishes from my co-workers who let me know that with one word they will cover my class if I need to put my feet up, and who have pretended that my chemo-induced acne really isn't that bad!  I love them, one and all.

Third, I realize that there are some things I can control in this whole experience.  A woman I work with, Linda, (she will be a whole other blog!) taught me that the mind is an amazing thing.  If it can heal a cut or a bruise, why not cancer?  She keeps reminding me to make sure by brain is telling my body that it is healing...and then my body will believe it.  In my next blog I will write about her, and all of the "non-traditional" things I have done that I think have helped...well, they haven't hurt, anyway.  Changing my eating habits with the help of a nutritionist has not only helped me keep my blood counts where they need to be, but I am 45 pounds lighter than I used to be.  How's that for positive, huh?

So, while this has been a horrific experience I wouldn't wish on my worst enemy, as you can see there is always some light in the darkness. Lessons can be learned from even the most hideous of circumstances.   I would give anything if I didn't have to figure this out in this way, but I will embrace what I have learned and hopefully use it to help someone else someday. 
I'll be talking to you...

Tuesday, October 16, 2012

The last 7 months

Well, the past 7 months of my life have been a roller coaster, to say the least. In April I was diagnosed with cancer...a pretty rare cancer called Cholangiocarcinoma. Technically it is cancer of the bile ducts, but mine started in the internal bile ducts in my liver (Intrahepatic Cholangiocarcinoma, to be exact) and then spread through part of my liver. Google it if you must, but don't read too much...dire outcomes usually. Statistically, I am about 1 in a million (but some of you knew that already, didn't you?!)
 I found it myself...Around late February/early March I kept feeling something in my upper right abdominal area, like a hard mass. I went to the doctor who didn't think it was anything but did bloodwork, which all came back fine. I told her I was sure it was something so they sent me for an ultrasound, which showed a 10 centimeter tumor in my liver. They then sent me for an MRI to see if it was cancer or a benign tumor. The MRI couldn't determine with certainty if it was cancer or a large hermangioma, so they biopsied it. It finally came back as cancer (on Good Friday!) but they still didn't know what kind. They thought it was a secondary cancer that had spread from somewhere else, so I went through 2 different gastroscopes, a colonoscopy, mammogram, etc. Pretty much anywhere I could be probed I was, but everything came back okay. They finally decided it had started in the liver. My oncologist sent me to a surgeon at Hartford Hospital, who said she wanted to try to remove it. Two days later I had laproscopic surgery, which they do right before they cut you open. The laproscopic showed it had spread too much and was covering the hepatic artery, so they couldn't do the surgery. Worse, a resident told me, as I was coming out of anesthesia, that I was "terminal." The surgeon reamed him for that, but did tell me that I had a less than 10 percent chance of it ever shrinking enough to be cured and when I asked if I would live at least 10 years, so I could see my kids grow up, she said no. As you can imagine, this sent me into a pretty dark place for awhile. Well, beyond dark, really.  All I could think about was my boys growing up without me.  Not a place I ever want to be in again.  Luckily, I have some amazing people in my life and they convinced me not to believe her. A woman I work with shared with me her cancer story and how she recovered. She told me all about her belief in the mind-body connection and how the mind can cure the body. She got me reading some things that really helped me believe I could beat this, despite the statistics.
 In the meantime, my oncologist in Hartford asked if I would be willing to go to Mass General to meet his brother, a radiological oncologist involved in a clinical research study on cholangiocarcinoma. I went and qualified for their study in both chemotherapy and radiation.  The chemotherapy study is researching adding a new drug to the usual 2-drug combination for this cancer. It causes a horrible, acne-like rash on my face but they told me this is a good sign, it means its working on the tumor. So, I have been going for chemo every two weeks up at Mass General since the beginning of May. Since that time, the tumor shrunk off the artery in 3 months (which the doctor in Hartford told me wouldn't happen.) and I had a second attempted surgery.  Unfortunately, the surgeon found other, very tiny lesions on my liver so they couldn't operate.  Waking up a second time to the news they didn't operate was beyond upsetting, but I knew I just had to continue to fight this.  So I have been! My latest CAT scan was awesome...my tumor has continued to shrink and they can't see the lesions on any scan because they are too small.  The doctors are very pleased with how I have responded, so the new plan is a few more sessions of chemo, then 4 weeks off to "detox", and then I will be in Boston for 3 weeks of their special Proton-beam radiation.  The radiological oncologist really thinks he can kill the tumor with this.  Then it is a matter of figuring out how to monitor the lesions when they are too small to see.  It could mean more chemo to try to do them in, or waiting and seeing what happens.  Regardless, I really believe I am going to be okay.  There was a time when I didn't know this, but, I can't explain why, now I just know everything is going to be okay. I know my fight isn't over, but I'm going to continue to beat the shit out of my opponent!
This has been anything but easy, but I know others have had it so much worse than me.  While Chemo sucks, makes me exhausted for days, can't touch or drink anything cold for a week after, and other lovely side effects, like neuropathy in my hands and feet, it hasn't completely incapacitated me. I have been able to work most of the time with a few days here and there to rest. I think of my chemo as liquid gold because it has been working. My oncologists call me their "rock star of blood counts" because mine have never dropped low enough to have to skip chemo, which usually happens.  I have made their clinical research look pretty darn good!  According to them, my response to the trial drugs has been "phenomenal!" In addition to chemo,  I have been working at visualization, meditation, changed my eating habits and am trying to eat a high omega-3 diet which my nutritionist believes helps stop tumor growth (no sugar, no dairy, no red meat except for grass-fed beef, tons of greens, etc.) Well, no sugar except for when I need some, anyway! I am also a firm believer in prayer, and I know the prayers of many have touched me. Whatever it is, something is working. Personally, I think cancer just didn't realize what a stubborn, hard-core bitch I am.  I will NOT have it! So don't feel sorry for me...feel sorry for the cancer that dared to mess with me...play taps for it, as a matter of fact, because its days are numbered!
 7 months ago I was given virtually no hope.  Now,  my tumor is about a third of the size it was, is no longer on the artery, and in a couple of months will be blasted to smithereens by some high-tech machine I can't even begin to understand.   I thank God everyday for Mass General, they are amazing and have truly saved my life.
Well, that's my story up until now. It has been an unbelievably hard 7 months, but I am trying to take some positive from it. The number of amazing people I have in my life humbles me every day.  That is a whole other blog...I think the next entry will be all about what having cancer has taught me.  Stay tuned!