Dec. 3rd So today has been a good news day. The radiation oncologist assured us that the radiation is working, the swelling is coming down and the left brain is now sitting where it’s supposed to be -in the left brain cavity- instead of squishing up against the right brain where it was a couple of weeks ago. Sonny’s symptoms are noticeably improved, but given the high dose of steroids he’s on, we didn’t want to assume that it was the radiation and not the steroids that is causing the improvement. I may be right in thinking that we won’t get a definitive answer, till at least mid January. It might not be the Christmas we would have liked, one where we give thanks and praise God and buy a bunch of stuff to celebrate the relief we feel. Well, we could give thanks and praise God anyway, but it might not be directly related to cancer this year. We might be still too engaged in kicking cancer’s butt for that. Definitive answers would be so much nicer for cancer patients...if they all turned out to be only the ones we want. I have to admit I’ve been kind of down and having a hard time to get back up. When Sonny was on chemo and had to be hospitalized, the nurses used to take the responsibility from me for a few days. I’m not sleeping as well with his much more complicated pill routine, and I have some chronic, non-life-threatening but annoying health problems of my own and they are all flaring up at once. One thing about radiation: I don’t have as much to do, so my body has stopped running on adrenaline. For me, that means a crash is almost inevitable. Also, I’ve attended three sad funerals in the last two weeks, two from our community and one in Charlottetown, and it has given me -and many other people- a lot of time to think about death and dying. And the weather in November sucks. But after a ‘me’ day provided by my hairdresser, my friends and Laura’s esthetics studio, coupled with some more great news, I may just be on the way back up. Yesterday I had a Eureka moment about survival rates for lymphomas of the brain. Since the failure of Sonny’s chemotherapy, (which wasn’t entirely a failure as the tumour only grew 10% over that two and a half months. Without the chemo and steroid regime, it would have grown a lot faster than that.) I’ve been doing too much research as I try to catch up with a disease I know very little about. I read on the Canadian Cancer Society’s site that the prognosis is poor. Then I went to another site that talked about the high recurrence rate. Somewhere in there, I read an article that talked about the patient’s performance status, in other words the patient’s ability to do daily tasks. Somewhere else it mentions the patient’s general state of health. Sonny has very few or none of the risk factors for cerebral lymphoma, which usually happens to people with immune compromised conditions, like people with Aids or organ transplants.(mostly Aids) So if you put all that information together, shake it up and see what comes out of it, Sonny is a candidate for success not only in beating this Stupid Tumour but also in banishing it to some far distant kingdom, never to be seen again, as he is not sick to start with! Now that’s something to celebrate this Christmas! Sometimes the simplest connections allude me. But that’s not the good news. That’s just me, who wouldn’t know a straight flush from a full house, playing the odds. The stuff I do to make myself crazy now and then when I can’t control anything else and I’m worn out from the roller coaster that is primary site brain cancer. Sonny is more practical and has started playing cards again. He still wins more than he loses, now that his left brain is out of the way. He may not know what people are talking about, but he knows the probabilities, or probs as he calls them. He used to say that all the time when he was fishing lobster and waiting for the marine forecast to come on the radio at 5:30: “What’s the probs for overnight? Will we have to back off?”. But I think probs apply to poker too. He netted out $65 last weekend at the card table. But that’s not the good news, either. It’s funny to watch other patients respond to Sonny. By looks alone, he probably looks like he has the best survival rate of anyone there. He should be the odds on favourite. Often he’s the healthiest looking one and I’m sure they must think he’s a neophyte in the cancer world, even though it’s his three month anniversary.We should get him a pin or something, like an AA chip, for that. You meet some interesting people in the Cancer Treatment Centre, and sometimes, you meet some old friends. The waiting room for Radiation Therapy is much smaller than the main waiting area at the entrance. The chairs are on three walls of the room so it’s hard to avoid looking each other in the eye, although some people prefer to look at the wall, instead. Me too, some days. The other day a woman introduced herself as someone I worked with and enjoyed some laughs with twenty some years ago when I worked for what is now Service Canada. This woman retired last winter after thirty two years with the Feds and was diagnosed in the spring. She said the last few years she worked at Service Canada were just miserable and that the staff struggled against the blue tide to try to help anyone at all. She calls her cancer Harper. So when she reads the poster that says, “Keep Calm and Kick Cancer’s Butt” it comes out, “Keep Calm and Kick Harper’s Butt!” I like it. Yesterday, a man in his sixties came in all by himself, plunked himself down across from us and announced “I have cancer.” Okay. So I said, “So does Sonny.” Then he told us about where he had it (three places) and how he hadn’t been sick a day in his life, fit as a fiddle. Then he said “Except I’m a boozer. Been a boozer all me life.” He wanted to chat so he and I carried on while the radiation technician sang “Rockin’ Around the Christmas Tree” to Sonny and all the rest of us from her station in the tech room. He was quite philosophical about it, said he was sixty seven, not like he was a kid of eighteen with his whole life ahead of him. People are quite philosophical here. We’ve also met a young mother who has roots in Rustico and a very organized, matter of fact approach to all her cancer experiences. Very helpful and sweet. So you meet all ages and stages and shapes and sizes of people. We have all shapes and sizes of cancer, too. One thing we can all agree on as we sit around doing the cancer wait shuffle is that PEI has way too much cancer. Forty percent more than anywhere else in this country. Some people say that’s because we have an aging population, but so do the other Atlantic provinces. Also true for obesity, smoking, etc. We’re not 40% worse in our lifestyle choices than the rest of the country. I don’t imagine our genetic code is that radically different from the other Atlantic provinces, and we have strong, supportive communities to help us with that other cancer boogey man: Stress. So what gives? After we said goodbye to the elderly gentleman and the singing technicians, I commented that Sonny doesn’t have much pain. Sonny decided that, compared to other people we meet here, we are pretty lucky. Laura and I had a good chuckle over that one. I don’t know what Mik would say about that when she’s worried about her Dad and she looks at the hand she’s been dealt, but we are all really, really happy that his sense of humour is still intact. Earlier in the day, Laura and I and his family doctor were trying to sort out the date for the next meeting with his radiation oncologist, as the good doctor is a very busy man. Sonny looks up and says “I’m not that busy.” I guess anything will fit in with Sonny’s schedule these days! But that’s not the good news either. The additional good news came today, from Mikaela all the way out in Calgary. Her friends have been talking about doing a poker tournament for her since she was diagnosed in August, so last weekend they got it together and held one. (Westerners aren’t as quick off the mark at this benefit stuff as Maritimers. They have to be forgiven. ;o)) Mik’s friends are pretty highly competitive card players, so I’m sure they didn’t just let this happen, but Mik’s boyfriend Dan won! And part of the prize was two more tickets anywhere Westjet flies! Again! My friend Anne’s sister won the two from the PEI benefit and very kindly donated them back to our family. This means Dan and Mik will both be able to come home in January for Sonny’s birthday. Have I mentioned I am now in love with Westjet, too? Westjet was also a big help to one of the family members in our community who had to rush home for their brother-in-law’s funeral last week. So, in my books, Westjet rules the sky, even though I’ve never actually flown with them. Next time. Dec.4th The doc decided to reduce Sonny’s steroids down to only twice what he was taking a month ago. That comes as a bit of a relief, as Sonny’s blood pressure has been high for the last month or so, and I’m thinking it may come down some now (as long as the swelling is under control, too.) He might start to feel the arthritis he has in his back, though. One side benefit to the decadron is that it has been a big help with his arthritis. Meds. They do good, they do harm. But we’re not really brave enough to trust his treatment to the nuts and berries advocates yet so we’re stuck with them. I had a friend who was very oriented to natural healing. In fact, she was an amazing animal whisperer, especially with wild animals. She healed an injured juvenile eagle she found when she was out walking in the woods one day and released him back into the wild, among other things. But she got cancer, too, and she died anyway. So we take the poison and hope to be as lucky as Snow White. Can you guess who my favorite dwarf is this month? I think Sonny’s would be Happy. A couple of weeks ago, I saw an old boss of mine who looked like he was here with one of his three daughters. We didn’t speak, though I’ve been hoping to see him again, but he looked as worried as Sonny would be if he was accompanying Mikaela one of her chemo treatments. That’s not a happy Dad. Some of you may wonder why I don’t say more about Mikaela’s cancer. The thought of my baby’s cancer ‘journey’ is just too scary for me to begin to contemplate. Plus, she’s a pretty private person. Sonny is too, but she’s on fb and Sonny isn’t! Besides, he can’t read now, anyway. Oh Gawd that’s just mean. Sorry! Today I met up with another woman I know, another one that I’ve always respected and admired. We’ve shared some good laughs, too. She was filling out the questionnaire they give you when you first show up at the Cancer Treatment Centre. I looked at her and said “What are you doing here?” She said “Why not me? Might as well be.” I agreed and said, “Like everyone else, eh?” If PEI has 40% more cancer than any other province, that means that for every 1000 Nova Scotians going through cancer, there are 1400 Islanders. My friend was accompanied by her daughter who grew up with one of mine and is a sweet, sweet girl. So if you take all the Sweet, Sweet Daughters and Worried Dads and Accompanying Cousins and Aunties and Uncles and Nosy Neighbours and Drinking Buddies and Old Friends who are affected every time someone gets a diagnosis of cancer, well that’s a hell of a lot of people on this little Island. Is it any wonder I get so mad and want to kick way more than cancer’s ass? Not much point getting mad cause it doesn’t change anything anyway, but it keeps me from crying when I see someone else I care about in this place. Dec. 5th Tonight, a friend and I were talking about what my spirit guides might have to say about all this. She said she thinks they are trying to send me a message and it goes like this: there is a beautiful melody surrounding me, one with a happy beat, and I can just let go and let the music and the rhythm carry me now, go with it, let it take my worries away. I’ll take that. I wonder what the song is. It will probably show up in the next day or two. Or it could be this one https://youtube/watch?v=A3yCcXgbKrE
Posted on: Fri, 05 Dec 2014 23:51:33 +0000
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