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I need emotional support

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I haven't posted on this board before. I've posted a lot....probably too much....on the brain cancer board over the last three years.

My now 28 y/o son is losing his battle with an anaplastic oligodendroglioma. A brain tumor, grade three. He was diagnosed on May 15th, 2009. On that date, his NO told him that the median life expectancy was three to five years. My son was determined to fight with every resource available. He underwent a craniotomy with 100% resection of all visible tumor, then he did radiation and chemo for six weeks, then he did a higher dose of chemo. This protocol kept the cancer at bay. David went back to college, received great grades, got his own apartment, started working for Apple, was playing basketball, golfing, riding his mountain mike, hanging out with family and friends---just living life fully. We all thought he had beat it---until July 3rd, 2011. He had two tonic clonic seizures and an MRI done at the ER showed "disease progression." We were absolutely devastated but determined to fight. It's been downhill ever since. I won't go into the details about insurance denials, trips to NIH for a clinical trial, a multitude of seizures, ambulance rides to the ER, hospital stays for blood clots, brain swelling, cellulitis....it's been hell.

So now our NO gives him four to six months. He's been living with us since December. He has declined dramatically since the first of the year. The chemo is really hard on him and may kill him before the cancer does. My heart is breaking and when I look at his face, my heart actually physically hurts. He looks dazed and scared, or totally disconnected and out of touch, like a mindless zombie. He was so sharp and quick and witty and funny and full of life....an athlete and always in top physical shape. Now he is in diapers, he can't feed himself, he can barely answer questions. But he still understands, still knows what is going on. And he still wants to do chemo, he still has a hope that maybe he will get better.

When he was diagnosed, if he could have seen then what would happen to him and how impacted he would be, he would have been so horrified and appalled. He never would have wanted to end up like this. Cancer is such a cruel, cruel disease. Brain cancer robs you of who you are as a person. It's so terrible.

I don't really know what I expect for emotional support here on this site. I guess I just need to vent. I know that all of you here are going through, or have gone through really tough times too. I just need to hear from someone else who is going through the same struggles and total heartache and knows what I am feeling.

Love and blessings,
Cindy in Salem, OR

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I meant to add please check out my expressions area for pictures of David, me, and our family.

Noellesmom
Posts: 1306
Joined: Aug 2010

After losing MANY family members to cancer (although none to brain cancer), I can attest to the horrible nature of the disease. It steals away the person we love as we watch, for the overwhelmingly painful part, helplessly as it progresses and gains strength.

I am so sorry for what your son and your family have gone through and are going through. I pray for God's grace to surround you during this difficult time and that you find peace in what sounds like an inevitable conclusion.

My husband is in remission from throat cancer: I cannot and will not try to imagine what it must be like to be a mother in your situation.

Prayers lifted for you, cindysue.

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

Hi Cindy,

I'm a lymphoma survivor and occasionally visit other boards.

I don't know if I can say anything that would be comforting right now.
After reading your post and reviewing the expressions, my heart hurts too.
I can say with great admiration, it's easy to see the love in your beautiful family
and the strength and courage David and all of you have shown.

I hope somehow you can find an island of peace in all of this. I can't imagine
how difficult this is. I've read from many posts that hospice care can be invaluable
so you may consider this if you haven't already. Hospice is not only for the patient,
but for the family and caregivers.

I do believe in miracles, Cindy and I'm embracing positive thoughts for you,
David and your family.

Warm and loving hugs,

Jim

Young mom
Posts: 4
Joined: Jan 2012

The only difference between my situation and yours is the fact that it's your son...in my case, it's my beloved husband. All the same issues, all the same emotional pain, the heartache, the fury at this disease, the anguish watching him slip away, the inability to change any of it. I feel all of these things and I know you do as well. My husband is now in hospice care which might mean something different to you in the U.S. we are in Canada. But I wanted to say that if a stay in a hospice is at all possible for David, it would be the best thing for both of you. You need to go back to being his mom...there for his emotional support only...not changing dressings, not changing briefs.just loving him and being his mom. It was so hard for me to make that change from caregiver back to wife, but when I did, it was a huge relief for me. Cindy, I know everything you are feeling so please feel free to reply to me. it seems as though your David and my Dave are in the same stage. Blessings to you and David,
Amy

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for your replies. I am very grateful to know that others care. Amy, I'm so sorry that you are going through the same thing as I am, except with your husband. One of the things that has helped me is being able to grieve with my husband. He loves David as much as I do and he feels the same pain. We cry together in each other's arms, and I do get a measure of comfort from that. It sounds terrible but there's something that helps me be strong, knowing that he shares and understands my pain. It must be so incredibly hard to have your husband so ill. I'm so very sorry...this is such an absolute heartbreaking nightmare for all of us.

The last few days, David did a little better. He was able to swallow and eat a little, and he didn't do that "zombie" zoning out that scares me and breaks my heart. But then tonight he seemed really out of touch again. I can't figure out the correlation between his condition and any factors that might bring it on. We thought it might be caused by the pain from the neuropathy he has from when he had shingles, but we have that pain managed now with lidocaine patches, more morphine, and more gabapentin. So I don't know what's up. I'm hoping and praying that he will be better tomorrow morning after a good night's sleep.

I sleep in his room on a recliner. I keep it close to the side of his hospital bed so if he has a seizure in the middle of the night (he's had many during the night), I will wake up and be able to call 911. I looked over at him lying in his hospital bed, and he was just laying there, staring at me with a totally blank look. I asked him gently, "What's the matter, David?" Nothing. Just totally blank. It's like he doesn't hear or even see me. He never even blinked. I asked him if he needed anything....was he in pain....did he need a drink....did he need to be changed? Nothing...he laid there like that for about a half an hour. I know I shouldn't go there...but I remember how he used to be and it makes me physically sick with grief. I thought that after several months with David being like this, I would get desensitized or learn to adapt or whatever, but it's still such a fresh, raw grief and an open wound that doesn't ever get a chance to heal. Do people learn to live with "it"...with their loved one having these kinds of deficits or issues? I don't know how I can ever recover and go on with my life. I'm in limbo...I can't get back to a better time, I'm afraid of what is ahead....I hate how sick David is but I'm afraid of how much worse it might get. I'm just trying to take it one day at a time...sometimes one hour at a time.

Thank you again, you guys, for your comments.
Love and blessings,
Cindy in Salem, OR

gaganpolanki
Posts: 2
Joined: Jul 2012

Hello Cindy,

Kindly watch The Science of Healing (You can Heal any Disease).

Startling Scientific discoveries about the Power of Thoughts, Intentions and Beliefs..!!!

This is the Most Inspiring and Uplifting video for Cancer patients.

As Louise Hay, New York Times Bestseller says "If we are willing to do the mental work, almost anything can be healed."

http://youtu.be/4V874QSRVQA

Kindly share and help everyone.

Love, Light and Blessings,

Gagan Polanki

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