Jul 23, 2012 - 4:24 am
I don't know the purpose of posting here....maybe to vent, maybe to sort out my feelings, maybe a safe place to pour out my pain and sorrow? I used to post a lot in the brain tumor forum but since this is cancer SURVIVORS network, I feel that I shouldn't damage people's fragile hope by crying all over that forum.
My son David was diagnosed in May of 2009 with an anaplastic oligodendroglioma. A grade 3 brain tumor. He was 25 and in excellent health---an athlete. Working out and exercising was one of his hobbies. We were stunned and filled with disbelief when we heard the prognosis---3 to 5 years median survival rate. He had the same treatment protocol that a lot of brain cancer patients have---surgery (total removal of all visible tumor), radiation, then two years of chemo---Temodar taken five days each month. He felt sick and had bad headaches but he didn't complain. He went back to college, worked part time at Apple, got a lovely apartment in Portland, played basketball, golfed, rode his mountain bike---he was thriving. Until July 2011. He had two tonic clonic seizures and the MRI done in ER showed "disease progression." The tumor had returned, and it was malevolent and aggressive. It's been downhill ever since. We've had so many nightmare experiences but I won't write it all out---it would be a book.
My son is losing the battle. David is home with me and his dad, my husband of 34 years. He is totally bedridden, incontinent--in diapers. He can talk but it takes so much effort that he rarely speaks, and when he does, it's just a three or four word sentence. He has a lot of trouble swallowing. He has had at least one brain bleed, and he has times where he "zones out" and is in like a zombie state. When he's not in that state, he's totally aware of everything going on, and he knows he's in big trouble. I don't believe he has accepted the fact that he is not going to beat this cursed disease. He still wants to do chemo---even though the chemo ( carboplatin) and Avastin have contributed to his poor condition. I don't know if our oncologist will even authorize chemo any more. No more Avastin because of the brain bleed. Everyone---doctors, nurses, friends, social workers, etc --all keep suggesting calling in Hospice. We are not ready---yet.
Anyway.....I am so sick and miserable with grief, watching my son slowly spiraling downwards right before my eyes. He's fought so hard, he was (and is) so courageous---never complaining, always positive, always believing and hoping he could beat brain cancer....and I've fought so hard, with everything I had in me, researching, fighting with insurance companies, always questioning the doctors, supporting my son by believing with him that he could survive this....and none of it mattered or helped. He's going to die, and I'm so sad and so filled with grief for him. My grief is like a dark cloud that comes up from my feet and moves up to my chest and heart and squeezes my breath away, and then the tears start. My grief is an actual physical pain. I truly feel like I am dying too.
Having said all this.... I will add that David and I and our whole family are believers and we all trust God even though nothing is going the way we want or think it should go. I totally believe that when David dies, he will be in a much better, perfect place, free from all pain and sorrow. But we are stuck here in this life, and right now this life SUCKS. It could be worse, though, and I'm trying to be grateful for every good moment. We still have some good moments. Unbelievably, David wanted to go to Chuck E Cheese for his nephew's birthday party yesterday, so we all worked together and with a superhuman effort, we were able to get David into a car and to CEC. It took a lot out of David and all of us but it was worth it.
So that's my story. I have lots of pics in my Expressions area, and I've posted tons on the brain cancer boards. Thank you for letting me get this off my chest---I cried while typing this, and I feel a little better. I'll be back posting here a lot, I'm afraid. I know I write too much, but I guess no one HAS to read my posts if they are too long.
Love and blessings,