Sunday, April 11, 2010

When hope is scary

A couple of weeks ago Grey’s Anatomy had an episode where a terminally ill cancer patient is asking her doctors for physician assisted suicide. As you can image this was an emotional episode and very controversial. One of the doctors was against this and tried to persuade the patient not to do it. The doctor felt that the patient should never give up hope and there were other options then giving up. I could identify with this patient. I don’t want to die hooked up to all kinds of machines, on a ventilator and having my death be dragged on. I don’t think this would be good for me or my family.

There was once scene that really struck a chord. The doctor that was against it came in and asked the patient why she was so determined to die. Here is her response.

“Maybe you have to be dying to understand, but there is this thing that happens where death stops being scary. What starts being scary is hope, because it is not true. Even if they found a cure for cancer tomorrow, it’s too late for me and hanging onto hope may make you feel better, but it just makes me feel alone.”

I don’t think I would ask for physician assisted suicide, but I stopped praying for a cure a long time ago, my prayers turned to one for time. It was very frustrating for me when people around me insisted that there was still hope and that I should not give up and did not like it when I talked about death or even had the nerve to make jokes. Although not meant to be, these words were very hurtful to me. I am not giving up, I have chosen to live. There is movie (“Heaven on Earth”) where a teenager has sarcoma that has spread to her liver and she is dying. One of her options is to continue treatment that might give her more time, but will ravage her body even more. What about the quality of that time? When challenged about her decision to not do treatment, she told she was giving up. She responded with:

“I am not choosing to die, I am choosing to live, I just won’t live as long as you.”

I have spent a lot of time thinking about these two scenes and feel as though I could have written them. I would love to live a long and happy life, but it seems that that is not in the cards. I have come to terms with my reality and to some level I am at peace with it. I know it is hard for others to accept my diagnosis; it can make them uncomfortable, make them think about their own mortality and often leaves them without knowing what to say. If I could give any advice to the friends or loved ones of someone with a life threatening disease, I would tell them to respect the patient’s wishes. Even if you can’t understand how they feel the way they do, it is not a choice that came easy to them.

I have lived longer than expected and I contribute that to three things. First was my decision to stop chemotherapy - I believe it was weakening my body, gave me poor quality of life and I would not have survived the last year if I have continued it. Secondly the weekly acupuncture – My practitioner has focused on alleviating some of the side effects of the cancer, whether it be supporting lung function, treating the headaches or just boosting my energy. I notice the difference in how I feel after treatment. The third and maybe most important thing is my attitude. I have chosen to make the most out of my time. I live in the moment and try not to get dragged down by what is happening to me. I have really crappy days, but there is always something good to be found in those days. Getting caught up in the “Why me?” and “Life Sucks” mentality just takes away from the little time I have.

I can’t say I love my life, but I can say that I am relatively happy and I love my perspective on life.

2 comments:

Kris said...

Alli, when I saw that episode of Gray's Anatomy, I thought of you and wondered if you were watching and what your take on it would be. I too was struck by the scene where she tells the doctor that there's a point where you cease to be afraid. I have heard and read that a number of times and I hope that that will be true for me, should my path take that turn. In some ways that episode was difficult for me to watch but it was also heartening.

I definitely think you have chosen to live and that the three things you attribute to your still being with us are right on track. For me, quality of life is an essential. When I've read about your adventures and time with family, I know you've made the right choice. Seems to me that you are in the driver's seat for this journey. God will tap you on the shoulder one day and ask to take the wheel, in the meantime you are living and loving and experiencing all that you can with a zest that I truly admire.

Keep the faith and keep on truckin'!
Love,
K

Trish said...

I haven't seen either, but have been thru chemo numerous times and at one point, thought I was heading down the terminal path too.

Your post reminds me that some people just don't get it. They want it all to be better, to be fine, to be ok and sometimes, that just ain't happenin. People "ask" me how I am, then when I tell them the last scan was ok and I'm NED they immediately launch into "oh, great, you're cured!". If I try to tell them one is NEVER cured of melanoma, they freak out. As with the guy who asks me how I am just to tell me how ill he is (he isn't, but it's his only talking point and sympathy point)---I just don't ask him how he is anymore.

As to death---it isn't scary anymore. I sometimes worry I won't be here for something I think is important, or for someone who needs me to be here...but I stopped being afraid of death somewhere along the chemo line where I was half hoping it would kill me so that the pain and illness would just stop--that point where you're not sure if it WILL kill you, or if it is doing any good at all.

"Heaven on Earth"...I would add to that---"I'm choosing to live, maybe just not as long as YOU would like me to".

As one who has gone thru chemo, I would NEVER force someone to submit to more treatment---it should be up to the patient if they are mentally capable of choosing. Years ago, before my Dx, my cousin also had melanoma. She chose not to do treatment at one point. Even back THEN I didn't think it was my point to tell her what to do---because I wasn't in her position. While I might not agree with someone not choosing to do a treatment that has a high percentage chance of helping them live, or live longer & healthier, it just isn't my place to do so. And that, is something, I just don't think people get.

We recently had a couple in our congregation die, about a week apart. They were only ~60, both had aggressive forms of cancer and were way past their "expiration dates". At each of their funerals, some people were so upset they had died. And yet, to most of us who knew them, it was such a blessing. They had both been in such pain, they needed to pass. Their son understood---he will miss them both, but it was time.

Live for you, live the way you want to (as much as possible) and teach people a lesson about life and living. Life does suck sometimes, but you don't have to visualize and live that all the time! I'm happy your attitude continues on as do you.