Why is this happening to me?

I_Promise

" Why is this happening to me?" says my sister who got diagnosed with a grade 3 astrocytoma in July 2011.

We were just back from the new years celebrations. The music was perfect, almost textbook from my ipod list. The food great. People were fun and caring. My sister had conquered the dance floor. Guys wanted her. Girls wanted to be her. But almost no one new about her dark secret "I have a brain tumor." She was going fast on the champagne, like she wanted to forget that this curse was upon her. I was watching, always alert. Most of the night was going well except for me, ever watching, making sure she was having fun. But as New Years approached, she grew silent. I worried.

"Ten, nine, eight, seven..."

The crowd on the dance floor is dancing. I glanced at my darling Mark, my caring husband, who knows how worried I am. And I know what thoughts are going through her mind. The same one if I were diagnosed in 2011 with brain cancer. Mark is handsome with his tuxedo and his 2012 hat. A glass of champagne in his hand.

"six, five, four,"

How happy we would be right now. Everyone around us is happy. Or if they have a problem show me one that would trump brain cancer. Yes, I see. No takers?

"Three, two, one.... HAPPY NEW YEARS!!!!"

The song comes on, the one that has words to "ce n'est qu'un aurevoir mon frere, ce n'est qu'un aurevoir..." in french because it is my first language.

I know my sister is feeling alone.

"Let's go home" I say

"Ok."

We go home. I tell Mark to drive slowly, as my sister feels nauseous. The wine or the huge cyst in her brain?
At home I give her a hug. She lets out:

"Why is this happening to me?
"I don't know. It is not your fault. Life is absurd." I answer.

"I feel like giving up."

"You can't. I promised you a cure. You believe in me, right? Plus I cannot live without you. You can't give up."

I hug her. Give her a huge glass of water, a zofran for nausea, and her melatonin. We had to up the steroids today (from 1mg to 2mg) because of headaches and left arm pain. We have another MRI schedules early next week.

2011. What a disastrous year.

2012, here I come. Because it is survival here. I do not accept what it going on. I will fight with everything I have. I will attend every neuro-oncology conference if I have to.

J.

Raani01

Sending prayers and positive thoughts on your way
I don't know how to comfort you as I woke up today with similar feelings towards my husband who has grade 3 tumor.However, I would like you to know that your sister is lucky to have such a caring and loving sister and you will be at peace knowing you have done everyhting humanly possible whatever the path this life journey takes you.
I wish you and all on this site a Happy (Healthier) New year.
Raani

cindysuetoyou

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.....

connsteele

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.

4theloveofmysis

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.

chicken2799

I Promise
Your posts always moves me and stirs my heart! You are an amazing sister, and I am sorry you and your Sister are going through this. I will keep her in my prayers and pray that her MRI shows improvement for the New Year ahead!

Always in my prayers!

Michelle
Mobile, Al

dasspears

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

connsteele

dasspears said:

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

AA3 and prostate cancer
Sorry to hear about your sister-in-law. And also sorry to hear we have more in common than having a family member dealing with brain cancer. My husband has also been diagnosed with prostate cancer.

First off, our son, age 34, was dx last April with AA3. The surgeon could only get enough tissue for a biopsy. We have been told that treatment won't make it go away (no timeline given). He completed radiation and Temodar in June, then 4 rounds of the 5/28 day Temodar. However, last MRI showed another new tumor, so he is now off the Temodar and starting taking CCNU and procarbazine on a 6-week cycle.

My husband was diagnosed with prostate cancer in 2003. His Gleason score was a 7-8, so considered high grade. He's had surgery, radiation, and now is on intermittent hormone therapy, doing well. So hang in there.

Keep us posted. And here's to hoping and praying that 2012 will be a much better year for all of us.

I_Promise

chicken2799 said:

I Promise
Your posts always moves me and stirs my heart! You are an amazing sister, and I am sorry you and your Sister are going through this. I will keep her in my prayers and pray that her MRI shows improvement for the New Year ahead!

Always in my prayers!

Michelle
Mobile, Al

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.

nevergiveup12

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.

Never Give Up
How heart breaking for you and your sister. I will pray that in 2012 this monster becomes more tamable! It saddens me to see so many people have to go through this! With cancer coming so far I pray that my mom will get her vision back and this tumor will not progress. I pray that EACH and EVERYONE of you on this board get the good news you and your loved ones deserve this year! I much like all of you though about my mom so much this new years and hoping to spend many more with her! I will NOT let CANCER destroy my family or take her away from all of the things in the future she has to be in attendance for. I hope all of you feel the same way. I wish they had more awareness for this disease like breast cancer, and prostate cancer. It is something. I think MRI's should be a part of a standard check up after age 40. It's devistating to me that we don't get them until it's already gotten too far. My father passed from a ruptured anyeurisim and had he been required to receive an MRI it might not have ever happened. I will pray for all of your families as much as my own and would love to hear your stories of your loved ones!

God Bless,
KAH

cindysuetoyou

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

mighty6

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 good to have a stable MRI for your sister!
Julia,

Reading your post brought tears into my eyes. i tried to come up the right words for you, for Cindy, for Connstelee, for momsworld, and a few others who are currently going through low times, but often find words are too pale to comfort.

You write so beautifully. Please write often. I hope this help you vent out so you can go back to be the strong sister for her.



Take care,
-- Jane

Young mom

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.