Tuesday, December 7, 2010

The Dreaded D-Word

For those of you not receiving Google alerts for all news cancer, as I am, you may or may not have heard that Elizabeth Edwards has stopped treatment for her metastatic breast cancer and is preparing to die. Mrs. Edwards is a beacon of hope in the metastatic breast cancer world, so this news will certainly come as a huge blow to my metastatic friends. Losing Mrs. Edwards brings to light the one thing which we would all love to forget: we're dying here. We are living fully, but we're living while dying. This breast cancer can kill us.

I think it is safe to say that once you receive the diagnosis of metastatic, once you review the statistics, once you realize the cancer is in a vital organ, you have imagined the conversation with your doctor that Elizabeth Edwards had this week: "We do have more drugs to give you, but they won't help you. Too much has happened. This is the end of your story. Let's get you comfortable."

Right now, in my own metastatic breast cancer journey, my treatment is working and my doctors' outlook is positive, but losing Mrs. Edwards brings to the forefront that fear that I like to forget on the good days.

With this news, I figure this is as good a time as any to broach that huge topic that we've not yet discussed here on this blog. Let's talk about Death.

I am not afraid to die. Not at all. Not even a little bit. I can confidently say, I am ready. Whenever that day comes, whether it's today or 40 years down the road, I will not be scared.

I will not be scared for myself anyway. I am worried about my Big Man and my Mommy and my family and friends. I am scared and sad for them because I lost my father. My dad died two years ago, very suddenly, of a heart attack on his way home from work. My father died on Father's Day. He was 59.

My Dad with all four kids. At the beach, celebrating my second birthday.
I'm the half naked child with the amazing bowl cut
August 1985, Ocean City, Maryland
 I know all too well the huge hole that is ripped into the very fabric of your being when you lose someone. I know all too well the pain that will never get better. Losing a wife, losing a husband, losing a parent, a sibling, losing a child, that pain never goes away. Every day you think about it, but every day you learn to live with it. You don't move on, you just continue moving. Life goes on, you must go on, but you must go on with this huge sadness. You learn to live, but you are never, ever the same. I am so incredibly sad that my Big Man might have to carry that burden one day. I want to carry that instead. I want him to go first. I love him so much, I don't want him to experience a single moment of pain in his entire life. I want to take his pain away.

I feel so deeply for Elizabeth Edwards' young, beautiful children. My heart is breaking for them. I hope she is holding them close today.

  But I also don't want Mrs. Edwards' death to just be something sad that we read about. This moment needs to be more than that. I believe we need to change the way we talk about death and dying. Anyone with a diagnosis as serious as cancer should have a holistic approach to her care and should consider and have plans in place for end of life care. Just as someone has a team of doctors prepared to help them fight the disease, I also have plans in place to help me die with dignity and hope. I have met with my parish priest. I wish this same preparation for every cancer survivor. I firmly believe that knowledge is power. The earlier you talk to me about death, the longer I have to get ready for it. I believe that an introduction to hospice care and regular discussions about 'what if' scenarios are vital for any patient facing a life threatening illness, no matter your prognosis.

If done correctly, slowly, and in an open way, we can take away the fear and the dark cloud that surrounds hospice, death, and dying. Patients will be better prepared to make important end of life decisions. Your judgment might be clouded in the midst of this devastating news. Isn't it better to have ample time to consider these things? Some patients say, "I want to be kept alive as long as possible. Do everything you can." in the heat of the moment and in disbelief of the news, but if given time and space to consider this decision, they might come to a different conclusion.

I was saddened as I read the news stories about Elizabeth Edwards. A source says she has a matter of weeks, not months. I am a firm believer in, the earlier the better. I would like to be given months of notice. Give me as much time as possible with my family to prepare for this. I don't want my death to be all about me in a hospital bed. I want to have a few final walks hand-in-hand with the Big Man to a coffee shop. I want to sit in the sun on a beach. I want to ride rollercoasters and bumper cars. I want to play epic board games with all of my brothers and my sister-in-laws late into the night. I want wine and cheese and hugs and kisses with my best friends. I want to watch a sunrise. I want to have a last amazing dinner out- a real last meal. Not a last meal in a hospital bed, but a real last meal at a fancy restaurant in a beautiful dress that takes hours and is multiple courses long. I want to have dessert. I want to have everything on the menu that looks good! I want to order that really expensive bottle of wine.

My Dad in his element:
On Vacation with a cup of coffee and a paper

I didn't have those final conversations with my dad. I didn't have the chance to ask him some questions. He didn't have the time to tell me things. I didn't give him hugs and kisses knowing it would be one of the last times I could have that. I want that for my loved ones. That chance.

I realize I am doing all of this now. I am already living every day like its my last, but there is something sadly beautiful about having these moments knowing that it is really and truly the last moment. I want that knowledge. Even though I'm living with cancer now, there is always hope on some level. There is always disbelief. That won't be me. I am not Elizabeth Edwards. Until you have The Conversation with your doctor, it doesn't become real. I want the reality of that for a couple of months before the actual end so I can have really good conversations and memories.

I also think that having these last moments together will help my loved ones after I am gone to remember those final weeks and months fondly. There should be laughter in there. There will be tears too, but I also want laughter and good memories. I want final wonderful conversations. I don't want my final moments to be all about me in bed exhausted. I want the Big Man, Mommy, Brothers, and my Girls to remember this time with just some tinge of fondness and peace.

I want to be clear here, I don't want to die. I want to grow old with the Big Man, and I plan to! Growing old with my hubby is my deepest desire. I feel that desire deep down in my bones and in the deepest part of my heart, but I also think that how you leave this world is just as important as how you came into it. For some reason though, no one wants to talk about death. I think if we started a conversation about it, it wouldn't be nearly as scary as you all expect. I want my death to be somewhat beautiful. Even if cancer rages through my body and leaves me a shell of my normal self, my soul will still be there. My character will shine through. The way I look into your eyes, the way I hold your hand, and the way I choose to die. All of this will tell you that my soul lives on, even after I take my last breath. My soul will be here.

Expectant mothers spend months planning for the big day- c-section vs. natural childbirth, even 'water birth', midwife vs. obstetrician, blue, pink, purple or green nursery, crib or basinette, boy vs. girl, jack vs. john, abigail vs. sophia? Women also spend every moment starting in pre-school planning our wedding day. Beach vs. church, band vs. dj, the dress! Men, you do it too. You plan becoming professional athletes or firefighters. We plan so much of our lives. I don't understand why we don't also plan our last days together, what could be more important?

Whenever it happens, be it tomorrow, when I'm 31, 81 or 101, I want my funeral to be a great send off. If I spent months planning my wedding, why wouldn't I do the same for my funeral? My wedding day was the best day of my life full of euphoric joy and the overwhelming feeling that, for just that one moment, all was right in the world. My personality and the Big Man's personality shone through on that day. We had very personal touches throughout. Why settle for a sub-par funeral? I want fabulousness. I want my funeral to reflect my personality. I want it to be comforting to my friends and family. I want to send a little message of comfort. I want people to realize that I'm still here. Even after I'm gone, I'll still be there. This is my Great Goodbye. How can you not take some time to plan that? It is so incredibly important.

And so, I've spent a lot of time in thought about how I want to live my life, but also how I want to leave it. I have read the Bible to find appropriate readings that offer hope and comfort and my perspective on the life I've led. I've found hymns that I love that bring me comfort and that make me cry.

But even more than the process of dying, I'm also not afraid of death itself. I am not afraid of the unknown. I have a deep belief in God and I deeply believe that my father is still with me, on some level that I can not comprehend. How can I have this deep faith and belief? Especially since my life has been so very difficult, I of all people have every reason not to believe. I have every reason to get angry with God and turn from all of that "hocus pocus." I have this deep faith for three reasons: I have experienced moments when I know deeply that my father is still with me, I have been humbled by my own power through this journey, and I have found that certain people enter my life at exactly the right moment and I believe those people are my little angels. My fight has also, as I mentioned on Thanksgiving, humbled me to the sheer hugeness and beauty of this world. How can one not believe in God when you see a baby being born?

I believe that people are scared of death because we don't know what happens afterward. I was scared to death at the beginning of this journey about the fear of recurrence. But then one day my cancer returned, and you know what? I handled it. I dealt. The scariest thing happened and it wasn't so scary after all. It was devestating, but with the right little angels by my side, I got through. I deeply believe that death will be the same way. It is something beyond my comprehension, which is why it is scary. If you can not imagine something or understand something it is immediately scary. But if I can handle this crazy life I've been given, I can certainly handle death with beauty and grace.

And so, Mrs. Edwards, I feel deeply for you today. I hope that your family has the time they need and deserve with you. I hope you have those important conversations with your little ones. I am glad you are at home, but I am so sorry that your family has to face this. I hope your faith brings you peace and hope in the midst of this sorrow. I hope for you what I hope for myself, I hope you find peace and love in these coming weeks, and not suffering. I know you will face this with the same dignity and grace that you have faced all of your life's trials. You have, throughout your life facing unimaginable tragedy, always been a lady. You will always be a model for me.


Unknown said...

read this verse this morning..." The only thing that matters is faith expressing itself through love" Galatians 5:6. Love you Bridget!

Anonymous said...

You are amazing. I am in absolute awe of your wisdom, your soul, and the love that shines out from everything you say and do. Thank you for sharing... larry

Anonymous said...

You are a wonderful writer. You have the courage to say the things others are thinking. You are asking the scary questions and staring them in the face with faith, hope, and wisdom. If we could all have the mentality to live like we were dying and not take for granted the days we've been given, maybe we'd all have a beautiful goodbye like the one you described.

You are in my thoughts and prayers.

Bridget said...

Mary Elizabeth, you and I are on the same wave length, my love. I am blessed to have you in my life. Larry, the fact that you are in awe of me, when you are someone who lives so passionately for others, that makes me happy. Thanks for sharing! Anonymous, I was scared to post this. I'm not as brave as you might think, but thank you for making me feel better about the post!

Anonymous said...

Your eloquence is inspiring, every post is more amazing than the last. Thank you so much for sharing your story so openly. You are a truly beautiful soul and you touch all of those around you and even those of us who are cyber-fans. Patty

Anonymous said...

Bridget, that was beautiful,,,,just like you. You never cease to amaze me! Jen H.

Unknown said...

Beautiful...thanks for writing this.

melanie goes pink said...

Your faith is inspiring, your writing is beautiful, and I thank you for sharing your feelings about the d-word. I hope I remember to stop and drink that expensive bottle of wine and laugh and live my life as if it could be one of my last days, at least some of the time. I agree, you are an amazing woman.

Elicia said...

Bridget, after reading this post how can you not say you are brave. I know all too well the words you wrote of not able to share your hugs, your kisses, and most of all that last "I love you" My mom was in a hospital bed, in a coma, when she died from cancer. I wish she were as open about the d word and had your braveness to face it head on. I know I would have been better off as I know for sure that the Big Man, your family and friends will be. Always thinking of you and how you ispired us (me, Mike and Abby)from our very first encounter and keeping you close in my prayers. You are beautiful and brave in so many ways!

Ellyn Davidson said...

I am completely speechless. This post is beautiful and a true reflection of your character. Thank you for so openly sharing your thoughts.

Cruikshank Family said...

Bridget, I have to let you know that I've shared this with the home health nurse today as we were setting up my mother-in-law on hospice care today. They asked me to e-mail it to them so they can share it at their meeting this afternoon. They said that your story would be a great inspiration for so many of their patients and families.
Unfortunately, cancer is about to take a member of my family, but with proper preparation like this, the emotions are flowing easier and we're able to finalize everything openly with hope and peace.
Thank you.

Lisa @ lists in my pocket said...

Hi Bridget - I went to RPCS and came to your blog from Facebook. (I used to be Lisa Trader...it's Giacobbe now!) I just wanted to say hi, and that you are a beautiful writer and a beautiful person. Your posts are incredibly inspiring. My thoughts and prayers are with you!