Thursday, April 23, 2015

Dying With Dignity

It's been a little while since I updated you about my treatment.  The immunotherapy trial was unsuccessful for me, and landed me in the hospital multiple times.  Another trial involving a targeted treatment of the FGFR protein was also unsuccessful, as the cancer was more progressed than we had realized.  And so now my care has focused on keeping me comfortable in this last stage of my life.  

There is something I've been meaning to blog about for months, and that is, the attention created by Brittany Maynard.  It seemed like a likely blog post for me, however, it cut too close to home.  Now that I'm in a different situation, I feel that I can talk about this.   

Brittany Maynard chose to end her life on her terms, and in her time.  And her death was dignified.  Brittany's answer to the question of how to die in a dignified way is not mine.  Brittany died in a dignified way, and in a why that was her choice, and her right.  And it was dignified, for her.  

My choice, in my situation, is very different.  My decision to die in a hospital with hospital care is dignified for me.  And that is the question for all of us: what is dignified for you?  All along, I have made decisions that were right for me.  And this includes how I'm choosing to die now.  For some of you, dying in a hospital with assistance from devices like a catheter (which I now have) may not be dignified, but for me, this care it is one more decision that gives me more time and is the right choice for me.

Throughout my treatment, I have always chosen quantity over quality.  As in, I want to live as long as I can.  I chose multiple clinical trials, which was risky, but seemed to offer the promise of quantity of time. Which was my choice, and a decision I made with dignity.  

What has been important to me, has been the ability to spend more time with my friends, and my family, and my husband. And because of my choices, I have been able to do so.  Even now, even in the hospital, and maybe even in a way in which I couldn't've, if I were to have chosen to die at home.

In many ways, dying as a young adult with stage four cancer is unique.  My body is strong and healthy, except for the parts being destroyed by the cancer.  And the parts being destroyed by the cancer need lots of medical care.  The other day my oncologist said to me, "If you were a 70 or 80 year old woman, you would only have a couple of days, but because your situation is so unique, we can't make those kind of predictions."  This idea of being unique has been an oft repeated refrain, throughout my treatment.  My case is unique in many ways, including the fact that I am a young adult, and that I have been so relatively healthy, in spite of my cancer.

To me, dying with dignity means making your own choice. For me, I made my own choice.  Much in the same way that Brittany Maynard made her own choice.  And I hope that anyone who has to die from cancer is allowed to make their own choice - which is how I define dying with dignity. 

(Hi, Matt Damon here. (As in the husband.) So my wife asked me to help her write this final post.  She dictated her thoughts to me, and I tried to put them together as best I could, which isn't her usual style, and so if you noticed something seemed different about the writing style, you were correct.)

Wednesday, January 14, 2015

How Many Young Adults Have Cancer?

It's been quite a while since I updated this blog.  I've been pretty busy trying to keep up my normal routine while dealing with the side effects of treatment.  A lot has happened since I last wrote. For an update on my treatment, which involves an immunotherapy trial, see the January 2015 update on the About My Diagnosis page.

According to Stupid Cancer, 72,000 young adults are diagnosed with cancer each year.  Now I am not very good at math, nor do I claim to know anywhere near 72,000 people, but within my circle of friends, it seems like the real number of young adults with cancer is even higher.  Including myself, there are four of us who have known each other since we were teenagers, who have or had cancer.

Three years ago, one of my friends was diagnosed with stage III HER2+ Inflammatory Breast Cancer.  A vibrant, busy, mother of two, and successful professional, it was a shock to all of us.  Our community of friends rallied behind her and her family.  She underwent surgery, radiation, and chemotherapy.  After two years of maintaining a status of No Evidence of Disease, thanks in large part to infusions of Herceptin every three weeks, her cancer metastasized to her brain.  She underwent whole brain radiation with good results and continues to treat her now stage IV cancer with Herceptin infusions.

A little less than two years ago, one of my very close friends, at age 38 was diagnosed with stage I uterine cancer.  We were shocked that two people in our group of friends could have cancer.  Who gets cancer in their thirties?  She had a total hysterectomy, including thirty lymph nodes, and now regards herself as having 'had" cancer, even though she's still a little short of that magic two years without cancer mark.  Of course, having a total hysterectomy in your thirties creates all sorts of other problems that young adults should not have to deal with, putting your body into complete menopause overnight.  Her cancer also tested positive for Lynch Syndrome, although her blood work does not and she does not have the family history of cancer that comes with Lynch.  The geneticists don't quite know what to make of her, but she now has to undergo the lengthy panel of annual tests that go with Lynch.  She also mystifies doctors, being young and not overweight, and very active, it makes no sense that she developed uterine cancer.  About two months after her hysterectomy, we had a party with a uterus shaped pinata that I made, so we could beat the crap out of cancer.

Less than six months after that, I was diagnosed with stage IV stomach cancer at the age of 35.  You can read all about my diagnosis and treatment elsewhere on this site.  I've posted before about the "how's and why's" of my cancer.  It is all due to genetics in my case, a genetic mutation that gave me an 80% chance of developing stomach cancer, most likely at a young age.  To say that our community of friends was rocked by a third cancer diagnosis of a friend in her thirties is an understatement.

Then, this week, another friend, from this same group of people, had his left testicle removed due to what is most likely (90%) testicular cancer.  Now he is 40, so in the cancer world he is technically not a young adult, but this is still shocking and it brought me to really question what percentage of young adults has cancer. How many of us are there?

As I stated above, I'm not very good at math and I loathe statistics.  And I feel like this is the point where I would normally begin to sum up my thoughts with some sort of conclusion that would make sense of all this. But I have no conclusion.  And this doesn't make sense.

Stupid Cancer.

Thursday, September 11, 2014

Long time, no blog.

It's been almost a month since my last post. I'm sure you've all been on the edge of you seats.  The reason for the delay? I've been on a "treatment holiday" from chemo!  Woo Hoo! That means I've been out there living it up so much that I haven't had time to write.

I start treatment again in a little over a week. I'll also be having an MRI that day to investigate some spots on my liver. These spots have been there since my diagnosis and the consensus has been that they weren't cancer.  But after my most recent ct scan, the two radiology reports disagreed with each other, so hence the MRI to settle their dispute.  Never a dull moment with me. I like to keep those world class doctors on their toes!

During my treatment holiday, I've been back at work, full time, every day. It's been great. I'm feeling much less fatigued and the neuropathy and mouth sores have decreased. We also purchased a new car! I'll blog about that decision soon as a follow up on my "To buy or not to buy" post.

In the mean time, as you nail-bitingly await my next post, you can listen to me on The Stupid Cancer Show or read my guest blog on Hope for Young Adults With Cancer.

Finally, I wanted to share my latest awesome idea. If my treatment schedule stays the same, I'll have infusion on Halloween, meaning I'll have to wear my Wonder Woman costume to the hospital instead of to work.  So I've decided to go reverse trick or treating in the infusion suite. Instead of going door to door and getting treats because of my awesome costume, I'll go infusion chair to infusion chair and give out treats (probably rubber bracelets if I can find them cheap enough). I know, you wish you'd thought of this first, but instead of moping about that, steal my idea and go reverse trick or treating yourself. We'll start a revolution, spreading awareness and joy as we go!