Thursday, November 6, 2014

Enough Brave to Go Around

I suspect by now you've heard of Brittany Maynard. The 29-year-old newlywed recently made the very public decision to end her life before incurable brain cancer could make that decision for her. If you hadn't followed her story, you can read more about it here.

I've been debating writing about her life, her choice, her death here because I wasn't sure whether I agreed with what she did -- even if I 100% support her RIGHT to choose. After all, who am I to judge? Who are any of us, if we haven't been in the same situation? As my dad liked to tell me when I was young (and very often I had no inkling what on earth he meant): judge not lest ye be judged.

And yet, I couldn't help thinking of all of us who are fighting so hard to stay alive, or participating in clinical trials to further advance research for the next incurable patient who comes along. People lauded Maynard's choice as "brave," which left me wondering what that made the rest of us, those of us who dig our heals in until the bitter, ugly end. Those of us suffering through treatment after treatment in the hopes that one might work. Were we not brave?

Then I realized -- had an epiphany of sorts -- one has absolutely no bearing on the other

We can all be brave (or not; a diagnosis of cancer does not automatically turn one into a superhero, and some days, brave has nothing to do with the decision to get up and keep fighting. No--some days, that decision is pure stubbornness, or a deep-rooted responsibility to those who most depend on you to get your ass out of bed, or a little seed of hope that today might be the day they announce a cure). However you look at it, there is enough brave to go around. There is no brave shortage for which we need to conserve.

Putting on our bravest faces

Brittany's bravery was in her voice. Her bravery was in speaking up for the right to choose how you leave this world when you are told you will be checking out very soon. Tick-tock, tick-tock, tick-tock.

I was also diagnosed with incurable cancer, but I have not exhausted my treatment options. I do not have tumors in my brain threatening to take away my ability to make independent decisions. I am not having seizures that leave me unable to express myself. 

I repeat: I am one of the lucky ones. 

***

On Tuesday this week, a dear friend was admitted to hospice care, somewhat unexpectedly, as her cancer has taken a rather rapid turn for the worse. Radiation to treat her inoperable brain tumors (from metastatic breast cancer, not brain cancer) isn't having the desired affect. Someday soon, she will leave her two little girls, aged two and four.  

I cried until I couldn't cry anymore that night, and it had nothing to do with the elections.

This friend of mine told me she's at peace with whatever lies ahead for her. I can't quite wrap my brain around that idea -- of peace in the face of death. For me, it's an idea that no longer fits, like a sweater I accidentally put in the dryer. While I don't understand my friend's acceptance of her fate, I can find a form of bravery there, too. She has come to the end and -- still, she is bravely forging ahead to whatever might be next. My friend is a Christian, and I'm certain she would not choose the path Brittany Maynard did, even if it were an option in Arizona. 

Instead, hospice (from what I understand) provides comfort in the form of spiritual counseling to the extent one needs/requests it, social services for the family being left behind, and palliative care to keep the patient as comfortable as possible for however long it takes. In hospice, treatment for the disease itself is over. This process of dying can take weeks, or it can take days. With Medicare, hospice is available to any patient whose physician certifies that they have six months or less to live.

My friend will spend this time -- however much of it she's got -- with her little ones and her husband standing by. She'll be in and out of consciousness, in and out of pain, in and out of breath, until there is no more and she is just out. 

***

I have a scan on Monday. I expect good results (hope for them with every breath I take if I'm being honest), but I still filled my prescription for Xanax. I'm still jumpy with every weird pain -- the pinching where I probably pulled something under my arm in yoga, the place where my sternum cracks like knuckles when I stretch a certain way, and the headaches that are most certainly from stress and grinding my teeth at night but a little seed in my brain wonders what if anyway.

And all of this has me thinking: I don't know what choice I would make, if my options had run out and my possibilities were between a slow expiration and a quick end to suffering -- mine and my family's.

As my friend Nancy Stordahl wrote this week: "I remember when my mother was extremely ill, lying in a bed at a care facility and unable to do much of anything at all anymore. She was dying from metastatic breast cancer and it was a slow, painful and agonizing experience for her and for my family to witness. I remember there were moments when I wished the end would just come for her because she was suffering so much. I also remember immediately feeling guilty for thinking such things. I bargained with God for more time. I wanted more time; just one more day or one more night. I wanted it both ways."

I am a LONG way from that fork in the road. If and when it gets to that point, though, I really hope nobody will judge me if I move to Oregon, where I could at least get rid of my Xanax prescription.

11 comments:

  1. Hi Jen,
    This is such a well-articulated post. As you know, I've been thinking about Brittany Maynard's decision and wondering about that bravery thing too. I appreciate the "epiphany" you had. I think that's what it all boils down to. So many things in life (and in death) are anything but black and white and there are many different situations and many kinds of bravery when talking about illness and dying. I still struggle a little with the idea of speeding up death on purpose, but that's me and how I feel today. I believe a family's feelings do count and maybe death isn't really just about the person dying. Or maybe it is. I'm not entirely sure. If I were facing what Brittany was, who knows what I'd want? I appreciate how she brought the subject of death to the forefront, and a young person's death no less. Death shouldn't be such a taboo topic to talk about. Thanks for the terrific post and thank you for the quote. I'm honored.

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    1. It is so hard to know what any of us would do without being in the same situation, but I agree -- I'm so glad the conversation has been started. Thanks for being a part of that!

      And thanks for the good wishes on the scan. I'm obviously thrilled by the results. XO

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  2. p.s. Good luck with your scan. I'll be thinking about you.

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  3. I too have no no idea if I could do what Brittany did when there are no more treatment options left for me. The "dignity" aspect of the Death with Dignity Law is the reason I would want the ability to have the choice. Not being able to recognize my loved ones, not being able to communicate, not being able to feed myself or wash my own body could happen to me in the end --nothing dignified about that. I would rather my family not have to experience this possible result of my disease - horrible for me and them. My life insurance policy already made the decision for me though. They won't pay if I commit suicide. My family needs that small payout.

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    1. Yes, the insurance angle. I hadn't even thought about that, but of course, it makes sense. Thank you for adding that important consideration to the discussion.

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  4. Wow, Jen! I think it is so great that you share your feeling this way even if you are unsure of what they are. I felt really uncomfortable reading about Brittany. I didn't like how it made me feel. Thinking about that being my situation was something I don't want to think about but I do feel like maybe I should live the way she lived even without her medical condition. I did enjoy learning that lesson from her. I am so sorry to hear about your friend. She sounds like an amazing woman. It is nice to hear that she is surrounded by a lot of love. As are you :) So happy to know you!

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  5. dear Jen,

    this was such an insightful and thought provoking post. and I especially appreciate the notion that there is enough brave to go around. none of us really know what we would do in many critical situations, and not just those surrounding cancer. I was a hospice nurse for many years, and believe me when I say that having witnessed so many devastating scenarios was absolutely nothing compared to actually being diagnosed with ST IV metastatic BC, then losing my Beloved to an incurable cancer, then me being diagnosed with a second cancer. and now that I am alone, I still have no idea of what I will do if either cancer recurs.

    I am so sorry about your friend - I know it must be so hard for her family, and I know, too, it must be so heart wrenching for you. and by the way, you did a great job of explaining how hospice works. I wish your friend and her family much caring and compassionate support from her hospice team.

    I am sending you lots of warm hugs and BIG hope your scan will come back clean. oh, that photo you posted is priceless - the SUPER HERO FAMILY - just gotta love it! p.s. take the Xanax, and have a happy and relaxed week-end.

    much love,

    Karen OOXOO

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    1. Karen, thanks for saying I explained hospice well. I asked a LOT of questions leading up to this post, in an effort to present it fairly and correctly.

      And my scan WAS clean -- another post on that soon! Thanks for all your support, always.

      XOXO

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    2. That is wonderful news about your scan, Jen. I'm so glad for you :)

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  6. Admin please help share my story! My wife was diagnosed with inoperatable Brain tumor in august of 2015 which was measuring about 12cm X 9cm X 9cm in her frontal lobe the tumor had probably been there for years and took up around 68% of her brain pushing through her sinus cavity as well. This was like a hell of a news for me because she just delivered our 7months old son and i was deeply terrified as to what her fate will be because the doctor said her case was very severe and she needed urgent attention because she had just about less than 6 months before the cancer take her away from me. To summarize it all i was able to get a permanent cure for her after all the several modern treatments and therapies and save her from the cold hands of death and cancer from Dr. Joseph who treats cancer with pure natural herbs and extracts with his herbal medicine called elixir. All my life i have never seen any usefulness of herbal medicine not up till this moment that it saved my wife. I had to wait two years to write this so i can be really convinced she is permanently cured, up till now she is still very much healthy. I am overly grateful. If you have brain tumor, brain cancer, and any other forms of brain diseases do not hesitate to contact Dr. Joseph on
    Josephalberteo@gmail.com for more information about his medicine and possible solution. keep your hope alive.

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