Sunday, November 23, 2008Quote of the day: (Thanks Daddy!) "Courage is resistance to fear, mastery of fear, not absence of fear." ~ Mark Twain
Mattie had a restless night on saturday. Peter stayed with Mattie in our living room, and Peter said Mattie was up at 1, 3, 4, and 7am in pain. So you can imagine how great Peter felt today. I fortunately had another good night of sleep, but despite two nights of rest, I feel like a zombie. I am not sure we will ever feel normal again. Today was the kind of day that I would not want to see repeated.
Mattie had a restless night on saturday. Peter stayed with Mattie in our living room, and Peter said Mattie was up at 1, 3, 4, and 7am in pain. So you can imagine how great Peter felt today. I fortunately had another good night of sleep, but despite two nights of rest, I feel like a zombie. I am not sure we will ever feel normal again. Today was the kind of day that I would not want to see repeated.
Peter took a picture of Mattie last night after Patches jumped on Mattie's bed with him. It is a cute picture of both of them together and I am glad that Peter captured this moment. Mattie was open to having a playdate today, and Charlotte came over at 2pm. Charlotte brought Mattie a lovely Star Wars pop up book and some other great items, as well as a happy meal and a beautiful turkey shaped cookie. However, Mattie turned inward. He was agitated and frustrated. It was almost like he wanted to play with Charlotte but just did not know how, and got all worked up about this. He did not want Charlotte touching his toys, and he snapped at her several times. Charlotte dealt with this, but naturally, like any of us, got upset with Mattie's treatment. I can totally relate to how Charlotte felt. Naturally I also relate to how Mattie feels and it becomes overwhelming to see how his relationships with friends and family are changing and there really isn't much I can do about it. Charlotte did not stay long today, because basically we were at a stand still with Mattie, and we could not find anything he was open to doing with her. Thank you Ellen for trying to bring a smile to Mattie's face today. I know you and Charlotte tried very hard.
Mattie and I spent some time alone today, and I gave Peter the opportunity to get out for a few hours. Certainly not long enough, but the intensions were good. Mattie and I had a rough afternoon. There was nothing I could do or play with that engaged him or made him happy. We pulled out legos, but he landed up only getting mad at me because I wasn't either doing it right, or bringing him the right pieces. By the time Peter came home, I was thrilled to see him. I found today so wearing, that when Peter got home, I went upstairs to attempt to read more osteosarcoma research papers, and landed up falling asleep for 20 minutes.
I am not sure what is more depressing, the fact that there is virtually NO research available in the peer reviewed literature on multifocal osteosarcoma (Mattie's form of cancer) or when reading about cases of bone metastasis (meaning that there is a primary cancer site in one bone and then the cancer spreads to other bones, which could be a plausible mechanism to explain how Mattie developed multifocal cancer) the survival rate is grim. I mean really grim. In fact, in most studies most if not all metastatic bone cancer patients did not survive. When I read the statistics about survival, it is hard not to take this to heart, especially since what we are currently going through is torture beyond belief. We could put up with the torture, if the outcome would be positive. I realize nothing in life is guarenteed, but the stakes here are high. We have disabled Mattie physically on three limbs, his attitude and character have changed, and we have many more months of chemo ahead. You have to ask, what for? Why do this to him and us, if the chances of survival are non-existent. As my friend Karen always says, there has to be one kid who beats the odds, and who is to say it won't be Mattie. I cling to this line of reasoning. But on tough days like today, it is hard to find and reflect on the positive.
The afternoon was hard, but this evening was over the top. Mattie fell asleep from 6:30pm until 7pm. Peter and I had a minute to have dinner without jumping up like jack rabbits. We want to thank the Tilch family for a wonderful pasta feast. You really spoiled us and it is our hope to meet you in person one day at SSSAS. While we were eating, I landed up crying. I do this in calm moments, but this was the calm before the storm. At 7pm, Mattie woke up hysterical. He was in terrible pain, and we worked for 45 minutes straight to figure out what was bothering him. But there was no relating to him. We couldn't comfort him or reason with him at all. It was very hard for Peter and I to keep our cool, because Mattie was screaming and crying and did not stop for a second. Peter and I could feel our blood pressure rising and also we were powerless over what was happening. We could not give Mattie Roxicet (his pain medicine) either, because he had taken his dosage not that long before. I am not sure how we managed to get through this tirade, and I am still worn out from it as I write this. Mattie wiped himself out from this and is sleeping now, and Peter is resting with his eyes closed on the couch. What a life!
Even JJ (our resident Jack Russell Terrier) and JP came to visit today, but Mattie chose to ignore them instead. Mattie's attitude from my perspective is so natural. He is experiencing things that even an adult would have trouble grabbling with and understanding. Nothing about this is fair, and when I see other children Mattie's age, I get very upset on some level, because Mattie should be allowed to be a child too. None the less, as Mattie's personality changes, our level of isolation becomes more pronounced. If this keeps up, this should prove to be a VERY long week ahead.
I received a lovely e-mail from my former student, and now friend, Mary. Mary wrote, "You mentioned how nice it is to have this time with Mattie, even under these seriously challenging circumstances, without the interruption of all the demands of life's distractions...I agree with you, it is a blessing and a gift in the midst of all the agony you've gone through. Since my sons have become adults, I look back on the times we were really connected and close, the times we played together and just spent quality time together. I miss those times now, but I am grateful we had them. It's what I think of now that they are grown up and not living at home anymore. As difficult as this has been for you and Peter, and difficult is an understatement, this special time with Mattie will stay with you forever. One more thing, when you were describing moving Mattie to his chair...I wanted to write and say Mattie wouldn't have been the only one needing anti-anxiety medication to accomplish that task, I would have been asking for some pills too."
When I read Mary's last line, I laughed, but in many ways I can understand why parents and cancer patients need psychtropic medication. Cancer enables you to see the depths of despair that I wouldn't wish upon any family.
I liked the quote my dad found for the blog today. Because it indeed takes great courage to make it from moment to moment on this cancer rollercoaster. We experience and tackle fears everyday, Mattie's and our own. Of course the greatest fear, is our existential anxiety. Our anxiety and fear about how to manage pain, how long will Mattie have to deal with these feelings, and of course the overarching question which we don't really like to talk about.... how long will we have Mattie in our lives?
1 comment:
I am sorry to hear you had such a challenging day. I remember when Emma was sick there was a social worker who came around every so often to talk with me about "taking care of myself" and asking how I was "taking care of me first". I always mumbled something about how I tried to rest when I could instead of saying what I was really thinking which was there was really no me. The career, hobbies, interests etc.., that had been "me" before were gone-no time for them. All I had time to be was the arm holding on trying to keep my child from falling off a terrible cliff that was cancer. The whole "take care of yourself first" sentiment sesemed so trite, almost condescending and above all absurdly impossible.
That being said, even if you are totaly dedicated to helping your child, you only have so much strength and you do need some time away. One thing I did was buy up videos I knew my daughter really would want to see and stored them hidden to take out when I really needed a break. I'd put on a video she really wanted to see and then sneak to another room to read for a minute or sleep. I also went through packages when they came and if I thought she'd really like something in them, I'd hide it for another moment when I needed a diversion. Sometimes a new thing could turn around a sour mood and I kept those things on hand for just such occasions.
There was a restaurant literally 1/2 a block from our house. My mother would watch the kids and my husband and I woule go there with our cell phones in tow. Then, I knew that in less than 5 minutes I could be at my daughter's side if my mother felt she really needed me. This made it easier for me to upset her by leaving her becausee I knew my mother would call me if in 10 minutes she hadn't calmed down and I could be there instantly. Usually though, after a few minutes of drama, she'd calm right down and play with her grandmother. Even though we didn't go very far, it still felt like a break.
Also, I wanted to say that hard as it may be for you right now, you are fortunate that Mattie is such a strong child. I'm amazed by the fact that he has strength to throw a fit and the desire to actually do things which makes not being able to do them so frustrating. At an equivalent point in her treatment, Emma was so weak that she could barely muster the energy to turn her head to watch T.V. let along throw a fit. She was clinically underweight and had 24 hour feeds through her nose. She didn't eat anthing by mouth. There were times when I sat by her bed and wondered if she'd ever have the strength to smile at me again. She had multiple opportunistic infections and went severely neutropenic after every chemo. She was very, very weak. Mattie is actually doing very well strength wise which is making it possible for him to give you trouble. So maybe try, if you can, to appreciate the gift of the strength when you see the trouble. Also, I don't think his personality is really changed, he's just feeling bad, the old Mattie will return just like Emma, the original ADHD energy tornado did eventually.
As far as if it is worth it, Emma had very poor prognostic indicators at diagnosis and is still at high risk of relapse, but we have had 9 good months now and even if , God forbid, that is all the good months we get; it was deffinitely worth fighting for.
Hang in there,
Lauren
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