Mar 23, 2012 - 2:42 pm
I'm finally posting about David's response to his treatment and what the nurse said that hit me so hard.
First off, I see an improvement in David. Not a huge one, but he is acting better. He is not doing the weird behaviors that make me so upset. He's not nearly as shaky and weak, though I won't leave him alone or anything like that. He is able to shower and use the bathroom and walk around in the house without help, and that's great and a morale booster. He still is getting stuck every now and then, but not as bad. I had to give him a steroid at 5 am, and after we turned the lights out and got settled back in, I saw with the baby monitor (I'm not sleeping with him any more) that he was getting up and going to the bathroom. I waited for him to come back to bed. I saw him put his hands on the bed and lean over with his weight on his hands, and then he put one knee on the bed, and just leaned over like that, with one foot still on the ground. And he stayed in that position, kind of crouched over the bed. I waited and waited...I prayed that he could finish the task and get in bed. Waited some more. Then I could see that he was weakening and starting to shake. So I went in his room and said gently, "What are you doing, David?" He said, "Getting in bed." I asked him if he was stuck..he said no. I said, "Do you want me to help you?" "Okay." After I helped him into bed and got him all comfortable and covered up with the blankets, he said, "Thank you, Mom. I guess I was stuck." It makes me so sad. And what if I hadn't heard him get back up? I'm so glad that I bought that baby monitor. It's worth every penny.
So the day after David started Avastin, our NO's big dog nurse called me. We talked and I asked her what to expect from the Avastin. She said that they hoped it would help David be more "in touch" with things. Then I asked if I it was reasonable to hope that Avastin and the chemo he is also doing (carboplatin) would shrink the tumors down and reduce the mass effect enough that David could have another BBBD treatment a few months out, or was that unrealistic of me? She said it was unrealistic..."that is not realistic, Cindy." I wish I could send a video of my imitation of how she says it...so full of gloom and doom and absolutely no hope in her tone of voice. Makes me crazy! It impacts me so much and I hate that I allow her comments to devastate me. I tell myself that Dr. Neuwelt is the real authority and expert and he said that he thought this treatment protocol would help David (though he hesitated and said, "let's wait and see how he does" when I asked if David could do a BBBD in a few months).
Then that nurse started talking about reducing David's pain meds. They are nazis about the pain meds. It angers me so much. Do they think that David enjoys being drugged? Do they think he is faking having headaches? Next time I talk to them, I'm going to get nasty mean and ugly and ask them if they think we are selling it on the streets or if they think David is going to become an addict. I did say to her that he's been doing good on the level of pain meds that they have him at, and why would we mess with it now? Are they thinking it would help with the side effects like getting stuck, etc.? And she said actually at this point, it probably doesn't matter if he still takes a lot of narcotics. Well, thanks a lot. That really helps me out. I feel really ugly about the issue with pain medicine. They cut him back but I can give him more if he is in a lot of pain. He takes several different things for pain but I won't list them all here....and I am okay with cutting back on the extended release morphine and the steroids, but i want to be able to give him Dilaudid as needed. He's been taking it for over a year now, as needed.
Well, I haven't gotten over that phone call yet. I spent the rest of that day being brave and cheerful in front of David in his room, then going in the kitchen or bathroom and crying my eyes out. I called my sister and my daughter and cried with them. I hate having any tendrils of hope shredded like that.
My sister had written down a Scripture for me. It goes like this: "The Lord hears His people when they call out to Him for help. He rescues them from all their troubles. The Lord is close to the brokenhearted. He rescues those whose spirits are crushed." (Psalms 34:17-18) I thought that describes me perfectly. Brokenhearted with a crushed spirit. I've been praying a lot and thinking about different Scriptures, and it helps. But it doesn't take much for me to be weeping again. I don't take any of the Scriptures to be some promise that David won't die. What they mean to me is that God will help me to survive (mentally and physically and emotionally) whatever is in our future. I have shifted from taking it one day at a time to taking the morning by itself, then the afternoon, then the evening. David could seem bad in the am but be improved by the evening, and vice versa. It's almost a moment by moment battle.
David is feeling well enough and seizure free enough to feel like he can go back to sleeping alone. I miss our evenings together but I am so glad that he feels that much better. So every night I go in his room around 11 pm with a cup of tea, and we watch "The Office" or something on Netflix, on his big HD TV. Last night we were lying there watching TV, and out of nowhere, David says, "Mom......am I dying?" It shocked me and took me totally off guard. The look on his face......... I said, "Why do you ask me that, David?" He said that everyone is being so nice to him, coming over and visiting him, telling him that they love him....I said, "Well, we are all scared, David. We don't like the direction things have been going." He started to weep. I held him in my arms and cried too. Then I said, "David, you have been pretty sick before, with the BBBD and with the cellulitis/blood clots/infections and we were all really scared then. But you battled back then, and you can battle back now. It just hasn't been going the direction we like recently. We are all so nice to you because we can see how sick and shaky and weak you are, and we feel bad and we all love you so much." He nodded. And I said, "David, don't you dare give up and don't you dare quit fighting. You are a long ways from dying." And he said okay. And we finished watching "The Office."
But I went to bed after that in my own room and I cried off and on for most of the night. I called my poor daughter and told her about my conversation with David. The pain I feel is so intense....but I told myself that when I get up in the am, I would need to find the perfect blend of truth and hope to say to David. I won't pretend to him that I am sure that everything is going to be okay and he's going to be fine, but I am going to hang on to hope and say that we just do not know...and neither do the doctors. Now is not the time to give up hope and to quit trusting in God.
But man, you guys. I feel pummeled.
Love and blessings,
PS Our NO will wait at least two months before he does an MRI (if we don't have any problems) to allow the Avastin and carboplatin time to make a discernible difference. At least that's what the girl from the NO's office said today when she called to tell me that David's labs from Monday all looked good. It's going to be a hard, scary two months.....I dread that MRI so much.