Wednesday, January 24, 2007

Bad News %>(

My concerns on Monday, looking at the scans, were well founded. I have a "recurrence" - a tumor - in the area where my gallbladder used to be, and where my cancerous bile duct was left. I think it's big - 4.5 cm x 3.7 - but the doctors don't seem to be particularly worried about its size. The really bad thing about this bad news is that the tumor is encroaching on my liver, my colon and my ureter - the tube that carries urine from the kidney. So, if it keeps growing, it could have a very bad impact on the functioning of those organs. I met with both the oncologist, Dr. J, and the surgeon, Dr. M, today, and got lots of information about what to watch out for. And, I've made a decision to begin chemotherapy.

I first got a preview of this tumor when Dr. M called me Monday afternoon to describe what he saw on the scan. He's pretty good at reading the scan, and saw the tumor, and described his concern. Then yesterday his assistant faxed over the radiologist's report on the reading, including details about the tumor, and my bloodwork, which isn't good for my liver, but Dr. J didn't think the numbers were that bad, compared to what he's seen. So, I've had two days to digest this information - and to get really, really upset about it. Tonight I'm a little calmer because information and a plan of action helps me feel less out of control.

While my conference with Dr. E at Dana Farber made me think about changing docs, for the moment I've pretty much decided to go with what's familiar, and stay at Beth Israel Hospital for my treatment. I have an appointment to begin treatment this Friday morning. (Yes, that's two days away.) I met the treatment nurse, Linda, and the nurse oncology coordinator, Sue, today, and had a "tour" of the room where they do the infusions. Came home with an armload of information, including lots of warnings about the side effects or potential side effects. The two drugs I'm planning to take (unless I change my mind tomorrow) are Xeloda (capecitabine), taken orally as a pill twice a day, and Oxaliplatin, taken by infusion once in three weeks.

As I anticipate this next phase of dealing with my disease, I would ask those of you following my journey to hold me in prayer and love and light, and to see me tolerating the chemo well. No side effects - few side effects - lots of good days still. I have apprehension, but the intrusion of this tumor makes entering chemo easier on balance. I hope to hold my expectancy and hope for the future.

14 comments:

Cathy said...

Lynne - Every evening I spend a few moments picturing you, bathed in the golden light of God's love. I'll double the wattage from now on. Much love -
Cathy

Anonymous said...

tears for you and a sort of gearing up for whatever's to come in your cancer journey- those are my first reactions to this post- if i could only "give" you the internal strength, the ability to dig deep and get strength from the core of your being- it's what you'll need- leroy has it right- we just go on- as a mother and supporter or as a patient-
i am going to send this core of iron stength your way- our whole family will be praying for you especially hard in friday- one hint- use the zofran- don't wait to start feeling sick- then it's too late-
lexie could tell you that- if you want a call, lexie will talk to you tomorrow night- she is the expert-
we love you- and are holding you in our hearts !!!!!
love, alice, nancy, emily and lexie

Sondra said...

novjsmxaI'll be picturing the drugs destroying those cells and you in a warm sunny light. I have to second the message from lexie take the anitnausea and any other recommended meds totally as directed even if you don't think you need them. Once the nausea sets in its too late...voice of experience here. If there is anything at all I can offer you in the way of help I'm ready. Lot's of prayers for all that is good are sent up for you daily. Sondra

Sandy said...

...holding you and your family close in prayer. May you feel that deep inner peace, and the warmth of light and love. Take one day at a time, and draw from the well within.
love, Sandy

Carrie said...

Dear Lynne {{Hug}}
Well, this sucks doesn't it? Jeez. I never would have expected this for you.

Okay, the good thing is that you are of sound mind, able to process the info and in control. Also, you are starting chemo SOON. Even though it can be daunting, it's best not to put it off.

As for prayers, you are right there along with Mom in my prayers. I do the white light and anything else I can think of. Also have several like minded groups doing the same.

I agree with Sondra's advice about the nausea and other meds. It may seem unnecessary but it's really not. And it helps the chemo not interrupt your intake of nutrition etc. As for side effects, seriously, check into the supplements.

Keeping you in my best thoughts and will check in as often as I can. Take care of you and the rest of us will keep up :) {{Hug}} again.

Beverly Lacey said...

I hope that you are feeling all the love that is surrounding you, dear sweet Lynne. My prayers for you, Patty, Lucy and Nathaniel will continue, as will my tears, as you venture into this new terrain. Sending you love and peace. --Bev

Anonymous said...

Lynne,

I'll be holding you in prayer and light and love...sending healing energy your way....and visualizing you tolerating the chemo well.

BELIEVE that you will tolerate the chemo ...visualize yourself on a raft...surrounded by white healing light and love....riding the waters...imagine yourself surrounded by the beauty and natural healing energy of the American southwest

sense your body's rythm...bend, flex, and rest as needed....heed your body's inner wisdom...tap into the core of your being...feel your inner strength.....all the way down to your toes....

call upon your higher power...Do you have a prayer mantra that helps you center and/or helps you gain deeper strength and peace?

Remember the words from Isaiah 43 ...God is with you... even in the chemo...

Do you have a safe and healing place in your mind's eye that you can return to through guided meditations, as a way of helping you cope with the chemo?

...perhaps a place comes to mind from your recent trip out west...or a special place from your childhood?

These are just a few suggestions for guided meditations and prayer that proved helpful for dear ones who previously navigated these waters.

Know I'm here for you...
Love,
Debbie

Jennifer said...

Lynne,

I can't find any way to directly email you, which is what I'd prefer to do, but this is fine. I just hope you read it. I remember you so fondly, and the time I spent painting silk at CCG in Vermont two summers ago. My daughter remembers Lucy, and my younger son Jeremy remembers violin lessons with your son as well. We have not been back to camp, but still think of your family as friends.

I don't know how much we talked about certain things when we met, so I don't know if you know that my children's father died of a brain tumor in June of 2000. He kept a website throughout the course of his illness, which I continued after his death with my own thoughts and feelings. I thought you might like to read about the journey that he was on, as it seems to be a similar chronicle to the one that you have (www.johnsfunnyfamily.org). I understand that this may not be the type of story that you want to read right now - the kind with an unhappy ending - but I thought I'd share it anyway because of your references to wishing you'd talked to people who were facing a terminal diagnosis, which he bravely and humorously did for eighteen months.

I think of you often and hope that things turn out well for you and your beautiful family. I will continue to read your blog - it'll take me a while to catch up, and with my now six children (counting my David's two and the new baby that we had this past fall), I have very little extra time.

I hope that this will be helpful to you. I'll be thinking of you, and sending you good energy and love.

Warmly your friend,

Jenny Lyons (and Kevin, Melanie and Jeremy) from CCG summer 2005, the cabin next to yours

Elaine Pascale said...

Lynne,
I hope you are feeling this outpouring of love and support: you have such a wonderful circle of friends and I am priviledged to count myself as one. My family (even though I am the only one who knows you personally) is praying and picturing healthy, happy days for you. Please let me know if there is any thing that I can do to support you here on campus during your treatment (cover a class, run interference, whatever).
With love and support,
Elaine

crow said...

Lynne, there is always hope, even up to the last moments, as long as we have breath. I will be keeping you in my thoughts and prayers.

Just a thought about chemo: it really does affect everyone differently...I've always seen those side effect warnings as lawyerly attempts to avoid lawsuits. Look, for example, at the warning insert in a bottle of Tylenol and you'll get what I mean.

Anyway, good luck and remember that with every breath there is hope.

crow

Linda & Jerry said...

Dearest Lynne,

We are saddened by your news and want to assure you that we love you dearly and we are here for you, Patty, Lucy and Nathaniel in whatever way we can be. Dinner, taking the kids for awhile...and we have four shoulders and four ears (actually one of Jerry's isn't too good) between the two of us - they are available for any one of you if you need them. And we pray, and we pray, and we pray.

Love from both of us to all of you.

Anonymous said...

Ok, my tear-soaked, muzzy comment didn't make it in at 2 am this morning, which is probably a good thing. 8-} Mother Theresa said, "I know God won't give me more than I can handle -- I just wish He didn't trust me so much." Sometimes it's impossible to know WHAT He's thinking, but I thank God for you every single day, and when He chooses to take you from us, whether sooner or later or much MUCH later, I will never stop missing you.
Mary F.

Elbow said...

Hi Lynne-
You are such an inspiration to my Mom. Get in there and kick some booty! You can do it!

A sincere offer: I am right in the city, minutes from the hospital if Patty needs to drop the kids off at any time.

Much love!
Liana (Bond)

Mary Rogers-Zion said...

Lynn you have much to share with your students. Work is a good medicine. I am sure that it would be nice to travel the world but a lot nicer to explore your family and the love that is there. Your family is the core of you. What better place to be during this tough time. You have a great gift for sharing and we thank you for sharing your journey with us. It makes us feel closer to you and your family. Your all in my prayers always.