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that each and every single incident needs to be investigated, for I know Dustin (I AM HIS MOTHER). When I say there is something wrong with my son, that what he is displaying is not normal for him, I expect the oncologist, who has been taking care of him for 5 1⁄2 years, to know his case; to know the patient and his family, and to look over the top of his large rimmed glasses and say something to the effect of, “We need to really check him out and I am just as concerned as you are. Let’s test.” But of course that doesn’t happen. We are told once again to keep a close eye on him.
All of this is hindsight now. If I knew then, what I know now, Dustin would have been looked at each and every time an incident would occur; and if his doctor wouldn’t, I would find one who would. But at the time, I want to trust our physicians. After all, aren’t they the ones who saved his life the first time????
Dustin used to say, “There is no cure for cancer, it’s all a guessing game, a game of choice.
One treatment might work for this person and not for that person and vice-versa. The choice of treatment can mean life or death, and all of the treatment you take usually will make you very ill. But that passes, you will have good days and bad, it’s all worth it, life that is. Will you go into remission for awhile or maybe you will be in remission for the rest of your life and die of some other cause. Who’s to know until the end? And the phrase, “you are cancer free,” I hate. In my opinion, it is incorrect. The physicians need to say the word, remission, even to the young kids, and teach them what remission is, because this is a serious disease. Kids are so smart these days, they know anyway. When you sit in a cancer office day after day and watch 4-year-old kids know how to fix their own I.V. machine from beeping, because they have called for the nurse
a dozen times and no one comes - then they sugar coat things by saying cancer free – I beg to differ. I think that the kids need to know that the definitions of remission and cancer free are one in the same.”
Dustin’s feet had been in so much pain since the latter part of 2002, from taking the drug Vincristine, that he would actually open his window in his bedroom at night and stick them out the window in the dead of winter, in order to freeze them, to kill the pain. I remember the first night we found him doing this, we were both asleep already and awoke to a very cold draft coming into our bedroom. We didn’t know what was going on, and we found Dustin trying to get some relief from the pain. Dustin had tried tons of pain killers; over the counter, prescriptions, narcotics, nothing would work. Our first response was, “Dustin you are going to have to close the window, its winter,” – until he said that it was working. So whenever he needed to hang his feet out the window, he did. We used to joke, “How am I going to explain to your doctors that you have frostbite?” Ha! Ha! I guess it’s a good thing that we live in the country. I don’t think that neighbors would understand unless they had experienced cancer treatment and the effects. As for the electric bill that winter, it was definitively higher; but on our small farm, we have a wood furnace which heats the entire house, garage, basement and all of our water, so we were extremely lucky.
After time, and more treatments, his feet became ice cold and partially paralyzed. In the summer, he loved it; he could wear sandals and keep them out of the sun and the pain was bearable. But when winter came, he couldn’t stand to wear socks because his feet would heat up and the pain was excruciating. He also wore sandals a lot in the winter, so when he made the statement that his feet were warm – that he had feeling and the paralysis seemed better – maybe you can imagine why we weren’t jumping on the band wagon. Dustin used to describe his feet as all-over 24 hr. pain; with pain surges and tingly like they were asleep. You couldn’t even massage them, for the pain would increase. And his dropped toes – if he was barefoot he couldn’t feel his toes and they would curl under his feet. He would step on them and injure them. Despite all of the trouble with his feet, he still worked out, and walked as long as he could every day.
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