Why is this happening to me?

New Year's Eve
New Year's Eve was really hard for us. David and I just hung out at home, just the two of us. My husband had to work (he works graveyards) but we did have the family over earlier for a big dinner. That was nice--a little crazy and chaotic because my house is not that big and there's a lot of us..plus three dogs. A lot of commotion and noise is hard on David...I think we were both a little relieved when everyone left. David and I went to bed before midnight but we didn't go to sleep. The neighbors had a huge bonfire and screamed and yelled and set off fireworks and had a good old time. I didn't really care. I couldn't sleep even if it had been quiet. I called my older son and we talked and cried together on the phone. Happy New Year. When we got off the phone, I laid in the dark with my thoughts and I felt this black despair overpowering me. 2011 is too painful to remember and I'm scared of what's ahead in 2012. I need to try to find some hope again.

I need your fighting spirit to rub off on me. I feel pretty beaten down. But still doing everything and anything I can to try to keep hope alive in David. It's a real battle.

May you have a much better, blessed 2012.

Love and blessings,
Cindy

PS How often does Kat get MRIs? Is the one next week a regular scheduled one or are the doctors checking something out? Isn't it only one month since her last MRI? I'm thinking (and hoping) that you are just being super diligent....I would have liked to have had more frequent MRIs but our insurance won't pay.....

New Year
Well we are all in agreement that the New Year was hard. I sat on the couch by myself watching a movie about a women with cancer. I dont even know why I didnt turn it off other than is starred Richard Greer...and I all ready knew the ending.
Im praying that 2012 we bring good things for you all. And that David can go to his sisters wedding and dance with her. I will be praying hard for that one...
I am praying for Kat and you too J. the sister thing hits hard and home..
Im praying for all of you on this site good MRI's and that these tumors hold still.

connsteele said:

We too had a bittersweet New
We too had a bittersweet New Year's Eve. My husband, our son David (dx AA3 4-13-11, inoperable, age 34) and I attended my nephew's wedding on New Year's Eve. On one hand, it was a truly joyous occasion: two people, starting a new life together. Everyone was happy and the dancing and party continued when close to midnight, party hats and champagne were passed out to toast the new couple and bring in the new year. But the closer it got to midnight, the more sad I started to feel. By the time the countdown ended, I was in tears. I felt so isolated: am I the only one here dreading the new year? Wondering what 2012 will bring? I also grieve in the fact that most likely our son will never know the joy of being in his own wedding.

Oh dear, I hope I haven't been too much of a downer for those celebrating the holiday. But this is the one place where I feel free to voice my feelings. Thanks for that.

I truly hope and pray that 2012 will be a turn around year in brain cancer research and that we all will be free from living with this monster handing over our heads.

Also dreading 2012
My SIL was recently diagnosed with two tumors, both GBM, grade 4 and inoperable. Currently taking Temodar and having radiation but the doctor says it's just palliative. She is my husband's sister and we have become close over the years. We did spent Christmas this year with her and husband although she slept most of the time. But that was okay - we were all together and had a good time. So I'm concerned about how 2012 will be also. My husband had Stage 1 prostate cancer in May so it's been a roller coaster ride recently.
Glad I found this group.
Debra

I_Promise said:

Thank you
Thank you all for answering me and sharing your holiday stories. Michelle: u are an inspiration to me, both by your attitude and the fact that you are beating this disease! BRAVO!

Connstelee: I hope that your son gets better; your love for him always shines through.
Raani01, dessapear, and Debra thank you for sharing your pain and your stories: please write more often.

Fortheloveofmysis: Oh! How I understand your pain! I think of your sister often.

Cindy, to answer your question, my sister was supposed to get her next MRI 2 months from her last one, so Feb 13th. But because she started to have headaches and left arm pain, I grew worried that it could be the cyst in her brain accumulating fluid and causing edema. I emailed her neuro-oncologist (Dr. Hercules in my sister's blog) and was receptive to doing a MRI earlier this week and to increase the dexamethasone. He offered admission if she was getting worse. At 10pm while watching a BBC documentary on Ancient Egypt and the Pharaohs (we have a trip planed) she tells me that she cannot wait any longer and wants be admitted tomorrow. So we did. The MRI of the brain was stable compared to the one just done in December. The Omaya Reservoir was not tapped and she was discharged the same day with the diagnosis of complex partial seizures because of the left arm pain. We are also staying at 2mg of dexamethasone daily (we did go down to 1.5mg to 1mg but she could not "tolerate" it: she was moving very slowly like and old woman, she needed a lot of repetition when I was explaining something, and she started to get the headaches at the same time.

So I am back to encouraging her work out more; I think some depression is setting in and she and I will have to fight it. I am always reading about David's progress. I have gone occasionally to his web page and I have noticed he is not writing anymore which did make me sad.

So glad MRI was stable!
Hi, Julia.

I'm really glad to hear that Kat's MRI was stable--and I'm so glad that you could have an unscheduled one done and were able to alleviate some worry.

I have been really working hard at trying to help David's state of mind--trying to restore a measure of hope. I asked him if he wanted to talk about his situation....the next step in his treatment plan, when he should move back to his apt, etc. and he said, "Not really." I tried to honor that and I changed the subject, but we ended up talking about those very things. It was a pretty frank talk and I chose my words carefully. I told him that we had both let our guard down and had not worked at maintaining a positive attitude like we had always fought to have. I said that the BBBD experience had really knocked us down and neither one of us had rebounded emotionally from that whole ordeal. I named all the positives that I could think of...for one, the only tumor-related problem that we think David has is his seizures. All of his other issues are from the chemos and the side effects of the chemos and the treatments. Our NO's nurse told us that we needed to "tweak" his chemos and treatments until we found the right combination to help David without making him really sick. Another big positive....how well David has recovered since we got home from the hospital. He's made incredible progress. David didn't really say much but he listened. And then today I could see a lightening of his mood. He smiled more, made a few jokes, even laughed out loud a few times. Oh, how happy that makes me! I need to remember how much influence I have, and I must make sure that I stay positive and confident and that I keep a fighting spirit. David really needs me to be strong. It's a huge responsibility and there's too much at stake for me to be sloppy and let my guard down and not help David in the battle to stay on top of things emotionally.

One little side story....I picked up some Chinese food for David the other day. I ordered it from a restaurant that we used to go to all the time when David lived in Salem. When I went to pick up the food, the lady who owns the place asked me about my son. I told her what was going on, and she listened and then when I tried to pay, she wouldn't take the money. I tried to insist, but she held my hands and said please let her do this for my son. I broke down and cried in the restaurant...a lot. I bent my head and my tears dripped all over our hands. The kindness we have been shown from so many people, even people who barely know us or don't even know us at all, has really touched me and David and our whole family. It helps us to know that so many people care.


I think your trip to Egypt is a wonderful idea! Such a great thing to think about, to enjoy planning, and to look forward to doing. Great idea!

Love and blessings,
Cindy

cindysuetoyou said:

So glad MRI was stable!
Hi, Julia.

I'm really glad to hear that Kat's MRI was stable--and I'm so glad that you could have an unscheduled one done and were able to alleviate some worry.

I have been really working hard at trying to help David's state of mind--trying to restore a measure of hope. I asked him if he wanted to talk about his situation....the next step in his treatment plan, when he should move back to his apt, etc. and he said, "Not really." I tried to honor that and I changed the subject, but we ended up talking about those very things. It was a pretty frank talk and I chose my words carefully. I told him that we had both let our guard down and had not worked at maintaining a positive attitude like we had always fought to have. I said that the BBBD experience had really knocked us down and neither one of us had rebounded emotionally from that whole ordeal. I named all the positives that I could think of...for one, the only tumor-related problem that we think David has is his seizures. All of his other issues are from the chemos and the side effects of the chemos and the treatments. Our NO's nurse told us that we needed to "tweak" his chemos and treatments until we found the right combination to help David without making him really sick. Another big positive....how well David has recovered since we got home from the hospital. He's made incredible progress. David didn't really say much but he listened. And then today I could see a lightening of his mood. He smiled more, made a few jokes, even laughed out loud a few times. Oh, how happy that makes me! I need to remember how much influence I have, and I must make sure that I stay positive and confident and that I keep a fighting spirit. David really needs me to be strong. It's a huge responsibility and there's too much at stake for me to be sloppy and let my guard down and not help David in the battle to stay on top of things emotionally.

One little side story....I picked up some Chinese food for David the other day. I ordered it from a restaurant that we used to go to all the time when David lived in Salem. When I went to pick up the food, the lady who owns the place asked me about my son. I told her what was going on, and she listened and then when I tried to pay, she wouldn't take the money. I tried to insist, but she held my hands and said please let her do this for my son. I broke down and cried in the restaurant...a lot. I bent my head and my tears dripped all over our hands. The kindness we have been shown from so many people, even people who barely know us or don't even know us at all, has really touched me and David and our whole family. It helps us to know that so many people care.


I think your trip to Egypt is a wonderful idea! Such a great thing to think about, to enjoy planning, and to look forward to doing. Great idea!

Love and blessings,
Cindy

Thank you Cindy
I have been reading your posts from time to time and this one struck me in particular. The optimism and enduring support you have shown your son inspires me as my husband and I face the greatest challenge of our lives. He has gbm iv and has had surgery, radiation, chemo and now more chemo. And through it all, the surgery has left him with severe speech and mobility deficits. And now, I am the primary caregiver of him, together with our 3 small children. There are several moments in the day when I wonder how we'll ever carry on without him. He has always been my emotional rock and now he lives in the moment with no concrete awareness of the severity of his illness, nor does he have the emotional capacity anymore to comfort me. The surgery has taken that from him. We have so many people praying for him but it's just so hard to remain strong when we are fighting so hard against a beast that won't relent.