Wednesday, April 18, 2007

Where is the Exit from Cancer World?

Today I'm feeling better, my second good day since the last infusion, and I find myself awash in feelings. Some of them are generated from within, some in response to external events.

Last night, I woke in the night thinking about chemotherapy, side effects, cancer, lack of appetite, all of the things I struggle with now, and wondered, "Will I ever be able to think about other things in the middle of the night?" I am so tired of cancer, of being thrust without my consent or volition into this space that runs my life and leaves me exhausted. Where is the exit from Cancer World? I want to get off this roller coaster now!

Then, I think of the 32 people who died at Virgina Tech this Monday at the hands of another, who died without notice, without warning, without a chance to say good-bye to loved ones, and I wonder again. Is it better to know that death is knocking, and to have time to ponder its meaning, to begin one's good-byes, to take stock of a life lived, or to go suddenly? I am sure that the families of those who died Monday wish they had had time to say good-bye, but to be in the position of the one about to die? I don't know, and there is probably no answer. We don't get to choose. But I began this blog by asking "If you had six months or a year to live, would you want to know? How would you live during that time? What would you do?" And these events, and my approaching 11 months since diagnosis benchmark, have brought the questions back.

It seems that periodically on my journey I cycle back to these initial questions. This diagnosis of gallbladder cancer and all of the attendant miseries of treatment have left me exhausted, physically and mentally. I miss the person I was. On days like today, when I feel good, I have a clearer memory of who she is, but most of the last two weeks, I have felt frail, sick, weak and barely functional.

On Monday, I was on hold to speak to Leroy on Talk of the Nation during his appearance, but they never picked up on my call. Elizabeth Edwards called in, and so she got a bit of air time. I was glad to hear her talk briefly about her experience, and also about the politics of funding for cancer. There was a question about mortality that was dealt with briefly, and I wanted to talk about it. Why is discussion of death and dying such a taboo in our culture? Why is it so hard to get others to sit and just be with their own mortality, and that of another? Last summer I was so hungry to find others who would join me in this conversation, and slowly, they did materialize, but I was frustrated by the lack of guidance and process and support. The other topic I wanted to chime in on was about funding for research and treatment. This disease is affecting so many people, and the government is not fully supporting the work that needs to happen for breakthroughs to occur, and more people to live!

And on the show, people in remission from cancer and currently struggling with treatment, were all eager to talk. Where do we take our stories? Who will listen? In Cancer World, it seems the other residents of the moment are the most likely supportive folks, but why can't we share with the larger world the challenges of our journeys? Why is it so hard to get the media to focus on the lived experience of those of us with cancer? (This was also a topic on Monday, and even Leroy the journalist said he thinks this is an area that journalism doesn't have quite right. )

So, I'm frustrated and tired, and wanting to get my ticket punched and leave Cancer World. I want my normal life back! I want to enjoy food again, have energy to work, delight in the noises of children without getting irritated, I want my body to work the way it used to. I can't take any of it back, and I didn't ask for it, but I am really tired of it all now.


Anonymous said...


The unforunate answer to your question is that there is no exit from Cancer World in this world. Even when you beat this cancer into submission, you will always be in Cancer World. You will always be looking over your shoulder, aware of each and every pain and "ouch", concerned about the cause. Your life will never be the same as it was BC, before cancer. Your life and that of those around you have been permanently altered by your cancer. This change isn't all bad. Sometimes our lives needed change that we were not even aware of. When Sondra was going through her first round of treatments after the initial surgery, she felt she needed to find a church. She had seen NCC while we were hunting down my relatives in Titicut Cemetery and it reminded her of the small church she attended as a child in Gladding, MS. So we gave it a try and the rest is history, our lives forever changed.

Cancer World can have a huge affect on personal relationships, making some stronger while destroying others. Some people just can't deal with the "C" word. Things are better now than in 1977 when my mother had gall bladder cancer and in the 4 months between being diagnosed and dying, the "C" word was never used or discussed. With her passing, she took the only exit but those left behind still live in Cancer World, different people than when they were forced in by her diagnosis.

Sometimes our lives are so busy that being forced to step back and re-examine our priorities is a good thing. My mother spent her whole life postponing joy and at 63, ran out of time. Finding yourself in Cancer World is a rude awakening. It's not an adventure any sane person would choose to embark on. But, if you are lucky, you will find you have many people who love you and are willing to be part of the adventure with you. You have changed many lives with your years of teaching. Your "adventures" in Cancer World have/will also change many lives. Bottom line, Cancer World sucks but we don't want you to take that exit.


Anonymous said...

Lynne, and Jan,

Such profound words from each of you….I’m sitting in awe of your ability to express the raw honest truth of it all.

There is so much here that speaks to me. Lynne, your words describe the feelings of many that live with chronic illness. It is hard work and people want an out. They mourn loss of the life as they knew it, the ability to “trust” one’s body to do/feel like it used to. I’ve never been on chemo. I don’t know what it feels like. But I saw you last week, and you looked frail, and you looked weary, and sad. As we spoke last night and I recognized your smile and renewed energy compared to the other day, and could see there had been a shift. I want you to continue to feel stronger and more like “you.” At the same time I recognize your desire to attack the cancer cells in an aggressive manner. And that means side effects including a debilitating fatigue that many of us just can’t fully comprehend. I’ve read very moving personal stories; I’ve seen the eyes of patients and heard the words….but I haven’t lived it. The closest I can come is the sense I had post-op. I could barely walk down my 300 foot driveway. I felt like a very old and frail woman and wondered if I would ever feel like me. But that fatigue gradually resolved. For you, and others on these chemo agents, it is not so simple. Just as you start to feel better, it’s time for another round.

As for your wish to discuss mortality, by your own definition – you are a spiritual seeker.
Not everyone is comfortable confronting the tough questions you ask. I think as Jan notes, times are changing. Not only in the treatment realm, but in the social context as well. Through this blog you have started a dialog, with people you knew prior to diagnosis, and many you have met since. For all who have discovered this gem, you are providing information, and planting seeds….giving all of us things to ponder. Again, I say – I sit in awe, and in gratitude for all I am learning.

with love, Sandy

Anonymous said...

Lots of pondering thoughts and feelings....maybe too many for one post. I remember thinking the same thing when my mom became totally consumed by her cancer.....but in reverse.
I remember longing for my mom....feeling like my mom had BECOME her cancer. My mother and I were always "two peas in a pod"....we could talk incessently ...sometimes my dad would actually get angry we were gabbing so much....( we always snickered afterward that it was sheer jealousy!)...we shopped, we cooked, baked, ate together...and when we were apart...we talked on the phone. We used to say we were "solving the problems of the world". She fought valiantly...for years. When diagnosed the last time with stage four....she slowly became the cancer. Eventually it is all we spoke much she ate, what she ate or didn't feel like eating, the meds, the dr's and the effects of the disease and the drugs..her weariness and if we weren't talking about it....I could see it in her eyes. The joy of life was no longer there. The joy of ANYTHING was no longer there. When I spoke of the kids or things in the world..funny or not....her mind just didn't go there...When mom died I mourned....but I had felt I had lost her quite a long time before that. That to me was the saddest part of it all.
I remember also telling her not to spend her time PREPARING....Gosh...even the last week when she was finally hospitalized....she woke up...and in her usual humorous way...looked at me and exclaimed "ARE YOU STILL HERE???...GO HOME!"...( she never wanted to be a bother...wanted me to be with the kids etc...and not in the hospital)...and then said "Oh, Corinne....I still have so much to closet is atrocious!".....imagine! Her closet!! ...I remember we both actually laughed about that...and then my chastising her at worrying about things that were so trivial to those of us who loved her. I assured her I would be the one in her closet and that it was probably a million times neater than mine! ( she had all of her shoes in boxes...w/tissue...and she WORE them...just was that neat!)
What would I do if I had six months??
I guess what I would like to THINK I would try to fight to keep my keep my mind in a good place. I think it is inevitable that there will be days...probably days on end...where you feel frail and old (by jiminy...there are days like that now for me ...and I'm HEALTHY!) and consumed by cancer....and there must be time for that. But I would like to think that on the good days I would do as my mom did ...up until those last few months when, weariness overcame her. She would walk to church....cook and bake and walk with the walking club at the senior center....and when asked why she kept doing all the "regular" things...she would laugh and say .."Well...I don't like the alternative!!".
I wouldn't want to travel....or "do" the things that I've "always wanted to do"...because....truly...if they were that important...I would have done it already.
I think I would rather be able to hug my within the four walls of my own home...sit in the sunshine ( helloooo!...what sunshine you say???ha)smell the earth after the rain, listen to the sounds of nature with my eyes closed so I could have it really sink in, listen to the sounds of laughter and know that it will go will all go on....and hopefully I will be there . I will be there in the wind, in the stars, in the twinkle in my future grandchildren's eyes, in the words and actions that my children find themselves saying in their own adult the traditions I've handed the stories that have made us all laugh so hard.
I would like to think that I would fight as hard as I could for as long as I could to not become my illness...but to love and feel the love of those that would need to have my words in their hearts when I am gone.
I cherish the fact that my mom and I said how much we loved eachother while she was still alive...and that at one time I remember hugging her and saying "Oh, ma, how will I ever live without you?" and she laughed her little laugh and hugged me and said "Oh, Corinne, life goes on, sweetie. You have your own family now and you will remember how much we loved eachother and the fun times and you will pass those things on to your children. Time marches on. Life goes on. "
Also...when my best friend throughout college died of malignant melanoma and I was feeling sad...she said "Come on...Janine is probably saying ..."C'mon, Guidetti,(my maiden name)...get going!! Stop feeling sad and get going!! Life is good! You just have to keep moving on." mom is with me each day...I feel her inside of I am doing things for my family....I feel like she is with me. I find myself doing things that she did....saying things to my kids that I remember her saying to me as a child.It really warms me...melts my heart...makes me smile.
Life doesn't end, goes on...we are moved to a different dimension but our life continues on here if we did our job on earth in the way it was intended. Don't you think so?
Cancer World?...just a little hell to pass through. You're correct...there is no ticket out...but I bet you can transcend it if you focus hard enough on why you are still here...what you still have to learn and to teach and to leave as your footsteps in the sand.
And I are changing lives...and are not alone...we are all there with you...beside you and will carry you on our shoulders when you are weary...until you are able to get the wind beneath your wings once again.
I will happen.
I would say...give it another week...once the warm sun envelopes our earth again....and the fragrance of the Spring earth rises with it's heat....and the world becomes aglow with the brightest of bright forsythias and will again begin to blossom yourself.
Hang in there, my friend.
We love you.

Maria said...

Hello Lynne,

Your questions demand that we come out of ourselves for a while and think about what we are all doing here. I have to agree that thinking about the chores I have to do today leaves me with some concrete activities to fill my mind and time.

As I have told you my sister is quite sick and we do not know if she will survive. I keep thinking about her 41 years and our years growing up. About how she may be interpretting what is happening to her. I know I do not think about your questions because it makes me sad, angry, and scared. I never learned that we don't stay sad and angry--that it all comes in waves--big ones and tiny ones. But if I avoid the feelings they come back in ugly ways. (I really almost killed the guy sitting next to me in the family waiting room on Tues in the hospital--you know, he was eating too loud...)-- anyway, thank you for asking the questions. Sitting in the unknown is what gets me. I'm working on it...

Love to you,

Anonymous said...

I feel for you, though I'm not the one with cancer (my mom is stage 4 pancreatic and not responding to treatment right now). I am grateful for the moments I have with my mom, the chance to say I love her, I'm sorry, to thank her. And she enjoys being together, but insists she would rather have gone in an instant as her best friend did of a heart attack some years ago. I can't argue with her. It is harder for those left behind to lose someone so suddenly, but perhaps easier for the person who is gone?

These mysteries are neverending while we're here on earth. There are no answers, but there is love. I have tried to encourage my mom to move her mind from the questions to the love, try to focus on beauty and let it drown out the darkness.

Yet there are days when that takes so much effort it is practically impossible. On those days, perhaps, it might be time to zone out in front of the tv?

My best wishes for you to feel more like yourself. My thoughts about Cancer World as Leroy and you wrote about it was that more and more people seem to be immigrating to seems like many more will be diagnosed with cancer and slowly the world will grow (and perhaps understanding and empathy?).

noone said...

{{Hug}} I know how you feel, or rather, my mother knows how you feel better than I do probably, but I have a good idea of it.

I wish for you to be off this cycle and soon. I pray for you to be healthy and well again. And I am counting on that. So when you have these days, please know, lots of us are pulling for you and if that has any weight at all in the scheme of things, you will get off this train and back to good and happy normal life.

Much love and Hugs,