INFORMATION FROM A WIFE ON HOW SHE COPED WITH THE DIAGNOSIS OF A GBM IN HER SPOUSE. (A posting, dated 10 September 2000, to the Braintmr e-mail list. Reproduced with permission. I hope other readers will obtain as much from this e-mail as I did)

Cindy,

I wish I had the perfect answer for your question, but I don't. I only can

tell you how I tried to cope with my husband's diagnosis of gbm. He was

diagnosed last October, so we are coming up to the 1st anniversary of his

diagnosis. During the first few months, I felt as though a heavy black fog

of fear enveloped me. If I thought too far into the future, I'd cry and feel

so hopeless. Cec and I had just celebrated our 25th anniversary that August

and I had assumed that we'd someday celebrate our 50th anniversary. I'd

always thought we'd be one of those old couples you see at the mall, holding

hands as we walked, smiling at each other and anyone could see the love in

our eyes.

How did I escape that heavy black fog? It was a gradual process. We

continued to laugh - Cec has a wonderful sense of humor, our whole family

does, we continued to laugh together. We watched a lot of comedies, went to

the movies or rented comedies. Laughter is very healing.

We got through it by focusing on that day, that hour, that moment. One task

at a time. Work helped me get through the days because it took my mind off

of Cec and the tumor. There were a lot of changes going on at work and I had

to focus on making those changes work. We focused on the good things each

day. A beautiful sunset, a beautiful song, watching the ducks, the squirrels

and the birds. The day that we learned the tumor was gbm, I took the rest of

the day off from work and we went on a picnic at the Brown County park.

We sat on the top of a hill that looked out over the trees, the leaves were past

the peak of the changing colors, but it was still beautiful. We just talked

and enjoyed the scenery. We talked about the past and our boys, Eric and

Adam, and what the future might hold. Cec has told me that that day meant a

lot to him. It was spur of the moment and we both enjoyed just being

together away from everyone else for a few hours. We continue to go out to

eat and to do the things that we enjoy, like gardening and traveling.

I found this list, this list full of so many caring and loving people who

reached out to me whenever I had a question or it was just too much. This

group is wonderful and it helped a lot in getting me through the really black

periods.

When it was too much, I'd play a lot of video games, because I didn't have to

think, I could just zone out and punch buttons, and watch the game unfold in

front of me.

We are both very spiritual people, this diagnosis rocked that faith a bit,

but we've found that prayers and meditation have helped both of us. I'd read

before that prayer is talking to God and meditation is listening for the

answer. Both prayer and meditation have been very healing for me and Cec

feels the same. I believe in guardian angels and that we receive guidance

every day. They have been helping Cec, Eric, Adam and me as we have

walked this path. I've noticed that the days that I have neglected praying and

meditating that I haven't coped as well, things seemed to get blown out of

proportion, my temper is shorter and I'm just a nasty person to be around.

Somehow, by asking for help to get through the day with grace, the angels

have been there to help me, they have given me the grace to be stronger and

to handle things better.

I've learned a lot about the brain tumor world and the various treatments.

We are now deciding on the next steps in his treatment because the tumor is

back. This journey has changed our family very profoundly. Some of the

things that used to be important to us are no longer important. Small things

are more important. We notice the beauty and the good in the world more.

Family and friends are so important. We have trouble asking for help, but

we're both learning to do that more.

I hope this helps a little. This journey is rough and the fear can smother

you. It's always there, but you can learn to put it to the back and push it

away for small periods of time so that you can enjoy the moments that are

special to you and your family.

Your family is in my prayers. May God bless you and keep you. May his face

shine upon you and give you peace. Amen.

Love and light,

Sue, w/o Cecil, 47, gbm, dx 10/6/99, sx 10/14/99, rad completed 12/99, no chemo, last MRI (8/30/00) showed growth and four small tumors surrounding the original, now deciding whether to do a second surgery and then Temodar. Meet with neurosurgeon 9/12 to decide.

Postscript: Susan Pressler informed the Braintmr list on 14 June that her husband Cecil passed away at 9 a.m. on Thursday 14 June 2001 (US time).

Hi everyone,
Cecil passed away this morning around 9am.  He fought hard against the beast and he is now at peace.  I will write more later.
Love and light, Sue, w/o Cecil, 48, gbm, dx 10/99,  1st sx 10/14/99, rad completed 12/99, no chemo, several good MRIs then tumor recurrence 8/00, 2nd sx 9/21/00, physical therapy improved his strength in leg muscles, CT scan 11/30/00 showed no sign of new tumor just scar tissue from surgery, great MRI 3/21/01that showed only a teeny, tiny spot, 7 rounds of Temodar, 5/8/01 MRI showed tumor had grown to the size of 10 grapes, no more surgery or chemo,  headaches and nausea, double vision, very wobbly, lots of confusion, hospice called in 5/30/01. Crossed over on 6/14/01 at 9am. Indianapolis, IN,   neurosurgeon: Dr. Steven James/Indianapolis Neurosurgical Group/St. Francis Hospital; oncologist:  Dr. Greg Smith/Indiana Oncology Hematology/St Francis Cancer Care Center