Wednesday, April 25, 2007

Not-so-Good News

So far, this has been a tough week in the medical news department. On Monday, we learned that my bilirubin has doubled. That's not good, because it suggests that the chemo is not shrinking the tumor enough to impact the place where the tumor is pressing against my bile duct bypass. At some point, having bile build up is uncomfortable, and then dangerous. This is the condition that brought me to the hospital last May.

Then, today, we learned that my CA 19-9 numbers have doubled, to around 4,000. That's also very bad news, and a further indicator that the chemo is not working. So, I'm scheduled to talk by phone to the oncologist, Dr. J, on Friday, to go for a CT scan on Monday, and then to meet with him on Friday, May 4, when we'll re-evaluate the treatment plan.

On top of all of this, the latest infusion of Gemzar has sent my hair falling out at a more rapid rate. Folks don't often lose all of their hair with this drug, but at this rate, I'm soon going to have very sparse locks. So, on Friday morning, we go to the wig place so that I have a wig as an option if I continue to lose my hair in birdsnests-full clumps each morning in the shower.

All in all, my spirits are pretty low with all of this news. The bad news has been offset by some glorious spring weather, and the sight of spring flowers finally beginning to appear. Still, this is my life that's gradually being measured by this test and that, and I don't like the news. At all. Please keep your prayers and good wishes coming. I certainly need them this week.

10 comments:

Anonymous said...

Lynne,
I feel your disapointment, discouragement, frustration and fear at the barrage of bad news. Don't lose hope! I know that we are all going to pray doubly hard for news and/or a plan to strengthen your defenses and fight this thing.
As for the hair...we love you....hair or no hair. Think of it as one less thing to fiddle with.I'll keep my eyes open for some interesting hats etc.
Focus on that glorious garden that is blossoming...get a garden hat...step out into the sunshine and drink in the Spring. We are sending our prayers and thoughts your way as always!

Cori

Jamie said...

Lynne.....There's SO much to say and, yet, so difficult on how to start, what to say; etc. KNOW that so many of us have you, Patty, Lucy and Nathaniel close in heart, thought and prayer....Some of my favorite quotes/sayings have been those uplifting in nature during various low, dark points in my life, and I'd like to share them with you. For so long I had many scotch-taped to my bathroom mirror, on my home computer, in my car, on my walls at work....a type of constant reminding....I probably am repeating some that I may have shared over the last year, but they're worth being heard once again....

"The soul would have no rainbows if the eyes had no tears."
-author unknown-

"Sticks in a bundle can never be broken."
-author unknown-

"May the breath of God be in you, The light of God before you,
The strength of God behind you, The hands of God beneath you,
And, the arms of God around you."
-author unknown-

"Ring the bells that still can ring
Forget the perfect offering,
There is a crack in everything;
That's how the light shines through." -author unknown-

Lynne, whether you know it or not, YOU are such a wonderful example of extraordinary strength, faith, tenacity....Friend, I wish you peace, gentle peace,
Jamie

Anonymous said...

Lynne,
Prayers, good thoughts, a listening ear are all here for you at this discouraging time. I will have you and all of your family in my heart and say many prayers for this down turn to go back up quickly.

Sondra

Anonymous said...

cancer sucks...plain and simple, it just does.

Lynne - when you feel heavy and sad, remember...

"Come to me, all who labor and are heavily laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."
- Matthew 11:28-30

Anonymous said...

ah, lynne- this news does suck, big time- sorry for the cussing on your site, but it's my feeling about all of this right now-
i will pray harder and send more good light and love- it's all i can think of tonight-
and please know you are thought about with great love, each and every day, many times-
love, alice

Anonymous said...

Dear Lynne,
I read your news and just kept thinking there always has to be one more thing to try. I "happened" to click on the Johns Hopkins link and "happened" to click on this post. I didn't know if you had seen it, but it's about a drug that shrinks tumors.
I don't know enough about your treatment to know if this is something that has already been tried.
I will continue to send prayers and healing energy.
Love,
Arlene

THE JOHNS HOPKINS MEDICAL INSTITUTIONS
Gallbladder and Bile Duct Cancer Web

--------------------------------------------------------------------------------

Discussion Board
interesting coincidence was posted 04/04/2007 08:56 pm by TXGal
E-mail Address:

--------------------------------------------------------------------------------

Message Text
I am studying for an exam tomorrow in a Botany class I am taking. Here is one of the paragraphs in my book:
In 1989, researchers at the Johns Hopkins Oncology Center reported that 12 women with advanced ovarian cancers that had not responded to traditional therapies (including in some cases surgery) had a decrease of 50 % or more in the size of their tumors and one woman's tumor disappeared altogether after treatment with TAXOL, a drug obtained from the bark of the Pacific Yew tree. Pacific yew trees are small and do not occur in extensive stands. They also grow so slowly it takes more than 70 years to attain their full size. Desptie the problems with the drug's availability, scientists are excited about the potential of the drug in the fight against ovarian cancer and the trees are now being mass produced.


I know it is talking about ovarian cancer, but I thought it was strange that I read that today and that it is such good news for cancer!! Good deal!! Best wishes to you!!!

Reply to this message | Return to Main Message List


--------------------------------------------------------------------------------

Responses
taxol & my mother - CherylM 04/04/2007

--------------------------------------------------------------------------------
DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions.Patients are advised to consult their personal physicians before making any medical decisions.

--------------------------------------------------------------------------------
Biliary Ca Home | Feedback | Pathology Home | Oncology Center Home
Copyright © 2007 The Johns Hopkins University, Baltimore, Maryland
Last Modified: 11/11/2002 10:50 am

Elaine Pascale said...

HI Lynne
I will double up on prayers from my end!
Elaine

Lipglossles said...

We are sending our prayers, and you are always in our thoughts. We love you all so much.

Stacey and Tanya

Anonymous said...

Oh my dear Lynne,
Reading your post makes me want to hug you, and I will do just that next time I see you. Just know that you and Patty and Lucy and Nathaniel are so very much loved by those who know you. There are extra prayers going up to Him from me tonight.
Mary M

noone said...

I'm so sorry for all this tough news and experience Lynne. I hope the doctors have some good ideas when you see them next.

{{Hug}}