Tuesday, March 27, 2007

Ten Months and Still Here! The Winter Tumor.

This past Saturday, March 24, marked ten months since the major surgery that revealed that I have gallbladder cancer. The diagnosis sounded like a death sentence . . . rare, incurable cancer . . . many folks live only two to six months post diagnosis . . . we don't know how your disease will progress . . . stage IV cancer, with "distant" metastasis . . . if you take this trip to the southwest you need to watch out for a recurrence of jaundice, for other evidence of spread of the disease and seek treatment immediately . . . yes, it would be a good idea to know where the closest hospital is as you travel . . .

Those were some of the conversations we had with my medical providers. Ultimately, they didn't tell us not to take the trip, and they didn't give us any compelling reasons why we should stay home. I couldn't begin chemo for at least a month following the surgery, so we were only potentially delaying beginning treatment by two weeks. Then, surprise! We returned from our trip, I had no signs of jaundice, was clearly recovering well from the surgery, and the CT scan showed no progression of disease. That was the beginning of what proved to be 8 months of being asymptomatic (except for that pesky spot in my abdomen that was removed surgically in December, and was an implant, grown from cells accidentally deposited as they removed my cancerous gallbladder).

And now I know, and know of, folks who are 18 month post diagnosis and doing well, and folks with even more time who continue to fight the cholangiocarcinoma, and to experience a good quality of life. As spring begins to stir here in Massachusetts, I find my desire to fight the disease is strengthened. Why not order those bulbs to plant in the yard in May and watch them bloom over the summer? Why not expect to be here in a year to watch yet another spring arrive? (Well, writing "expect" reminds me of the warning to have "abundant expectancy, but not expectations;" see my post of December 11) But why not have hope and imagination and faith in my body's ongoing ability to fight this disease?

Last summer when I was first diagnosed, my friend Bev was the one who said to me, tearfully, "You need another spring, you deserve another spring." This can't be happening, and the disease can't take you that fast, was the heart of her point. She and I both love to garden, and sharing our growing stories and cuttings and plants has been a special joy in our relationship. I knew what she meant. With the coming of this spring, I feel a renewal of that determination.

With the arrival of spring, I also feel I'm beginning to emerge from the "shell shock" of the sudden appearance of this dangerous tumor in my abdomen, visible in January's scan. I thought after 8 months that anything growing would be a little slower to be dangerous, yet this came on like gangbusters, threatening the functioning of vital organs, and, honestly, scaring me to death. It was a winter tumor, and it should vanish now that spring is here!

Something Leroy wrote in his blog before we left on vacation has really stuck with me, and seemed to articulate some of the changes I've experienced internally since the initial panic and anxiety about my life threatening diagnosis. On March 8, this is what Leroy had to say:

"I still stand by what I said earlier. I'm not ready to die. At the same time, when my cancer came at me again, I did finally come to peace with the process. After all, I feel that I have lived a decent life. But there is a big difference between coming to grips with your own death and giving up on life. I don't think any of us ever give up. Even when the time may come that we choose to end treatment, that's not giving up. That's making a choice."

"A big difference between coming to grips with your own death and giving up on life." Those were words I needed to hear last summer when I was dealing with the intensity of my diagnosis. So, I'm grateful to Leroy for saying the words I still needed to hear, for putting words on my experience. I feel that these last months have been about coming to grips with my own death, recognizing that it's likely to come sooner than I ever expected, while still not giving up on life. There's so much I want to do, and see, and write, and be, before my life comes to an end.

Let's hope that this winter tumor shrinks in the face of the chemo, and gives me even more time than I could have imagined last summer.


Anonymous said...

Way to go Lynne! 10 months is a good start to a much longer time here. I agree with Leroy and am so grateful that you introduced me to his blog. Here's wishing you the best Spring ever.


Anonymous said...

Isn't it a wonderful thing? The mysteries of life just reinforce the limitations of our mere mortal ability to try to guess what lies or doesn't lie in our future!
How wonderful that you are realizing that nobody can predict your future...but rather you must just live in your present and know that you are being held in the palm of God's hand.
Enjoy this beautiful Spring and summer...wonderful testimony that you never know what miracles can happen when you believe!
Sending you lots of healing and loving thoughts.

Elaine Pascale said...

I am grateful you are still here, Lynne! I will be grateful for your continued presence. I think Leroy hit on something very important: understanding something and embracing something are two different things. Likewise, simply accepting that death is a part of life does not accelerate death. People too often go into the mode of "I don't even want to think about it" out of some superstition that thinking about something makes it happen (I am one of those people!).
I have a feeling this will be beautiful summer, so just enjoy!

Anonymous said...

...to come to grips with the possibility of dying, but to not giving up on living. That is a distinction with a very great difference! I thank you and Leroy for putting that into my head. I will hold on to it.
Yes indeed Spring is about to begin! My mother was an avid gardener. Alas, that gene was not passed on to me, but I love to remember HER excitement each year as she looked forward to having "dirt under her fingernails" again. Get ready to enjoy it Lynne!
Mary M

noone said...

Dear Lynne, thank you so much for sharing that quote from Leroy. I've had little to no time to follow his journey. He's so enlightened (for lack of a better word) as are you :)

I know that's how Mom thinks of it too. It's a balance.

Oh and definitely get those bulbs ordered and plan your garden! You are living, so live! :) Mom is typically already out in the gardens by now. But we're going to hire a landscaper to do what she wants done. She can just point and direct! Bonus!! lol And I don't have to lift and move a hundred bags of dirt this year so .... personally, I'm allll for the landscaper :)

You are so right that this can be kept at bay. I think they give the worst case scenario to patients because that's all they know from historical data. But considering this is a rare cancer, they really don't know for sure right? We met a woman in our cancer clinic who is one year past her diagnosis. She stopped chemo before Christmas for kidney surgery. Her hair is all growing back. She's doing wonderful and looks great. She's back on chemo but feels better. And no new growth while she had to break from it for the surgery. So I do think this can be managed pretty well for a very long time. If not eradicated completely!

By the way, have you heard of Lee Valley? They have AWESOME gardening catalogues and all manner of gardening paraphernalia. Leevalley.com if you're interested and it's news to you. Although I have a feeling you already know about Lee Valley ;)

{{Hug}} I am so glad to see you in good spirits. You're always positive but this post really makes me feel like you're feeling and doing so much better. That is fantastic news!! :) I am thrilled for you!

palua said...

lynne :D
i love you. well, i have no idea if your meter tells you how long someone is on, but i think i've been on for at least a couple of hours. i started reading from the beginning; i knew something was up, becuase of the profound yelling silence, of your/our other blog. boy!! and have been very terrifed for you. so i didn't want to start by reading the latest news first; i respect your process so much i wanted to read all from the begining again. i wish i were not one of the ones who moves away but i am. denial is a powerful pull.
i am filled with SO MUCH LOVE FOR YOU!!! thank you for being you and the gift of your expression, laughter, tears, poems, medical knowlegde, fire, water and life.
i thank the gods for letting me know you!! you who gives "intimacy" such a standard. i know you better and better from the opening of your heart on the pages!!!! kiss
is mass. one of the states that gives access to pot for medical reasons?? :D lol
i am ready to plant/weed or whatever you point me too in June when i'll be there, lucky for me at your next birthday!! blowing kisses on your belly:D

i love you paula

Anonymous said...

hey lynne- i am really glad you have been able to fight ths cancer and embrace healing and that the treatment is helping- and i am SO glad you're here !!!!!
and i am visioning us on the beach in p-town, once again !!!! who knew ???? i really want that !!!!!
love, aice

Anonymous said...

I have nothing particularly insightful or profound to say except that I have thought about you since seeing you on Thursday and wanted to share with you that you are in my thoughts and prayers. I hope you have a wonderful garden this spring.