keith’s new self

I’m writing this from ye olde Ecovillage on Gambier Island. We don’t have power or running water, but we have wireless internet, thanks to the Gambier Radio Internet Project and a solar-powered wireless access point. It’s a beautiful sunny day. Five of us are out here doing various prep work for the cob building we’ll be working on in August - digging ditches, stripping the bark off logs, collecting stone for the foundation. I’m on cooking and relaxing duty. It’s great - nearly all the materials that go into the house have been sourced from our land - the main thing we’ve had to import is straw. Also we’ve been collecting used glass jars and bottles to become part of the wall structure. Been feeling pretty good health-wise. The last couple days were a bit yucky, but I feel much better today. Being out here in nature always seems to give me a boost. Life is good!

posted: 12:00 pm

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The last week has been pretty amazing. A couple of my initial Hodgkin’s symptoms have gone away. I haven’t had any night sweats in a week, and the pain is gone from my knees and ankles. Also my energy levels have come up a lot. The only negative side-effect I’m dealing with is an ear infection, for which I’m taking anti-biotics. I’ve been feeling so much better that I’ve needed to remind myself that I’m still in the middle of the healing process - don’t take on too much, don’t assume I’m out of the woods already.

I had a meeting today with my oncologist, Dr Savage, that went quite well. Had bloodwork and a chest X-ray. Apparently the pineapple is shrinking, and the doctor was glad to hear that some of the symptoms were improving, and that I didn’t get nauseous from the chemo. On the other hand, my white blood cell count was a bit low (”It means the chemo is working” - Dr Savage), and so I’ve been prescribed the drug Neupogen (aka Neulasta).

This drug is supposed to improve my white blood cell count. It needs to be taken intravenously, once a day, so I’ll be going to the cancer agency in a week or so to learn how to give myself injections (!). Good thing I’m not afraid of needles. The rub with Neupogen is that it costs almost $1000 per cycle, and my extended-health plan maxes out at $1000/year, so I’ll need to look at other funding options, like BC Pharmacare. I’ll need to come up with some kind of strategy if this becomes a regular purchase - for now I’m just paying for it out of my pocket.

In other news, I spent a wonderful day on Gambier Island on the weekend, helping move 23 bales of straw for the staw bale/cob structure we’re building this summer (I cooked lunch for the group and just hung out, and left the bale hauling to others). Just finished an excellent Sci-fi adventure novel called The Traveler by John Twelve Hawks, an engrossing read that I finished in a couple days.

I’ve got round 2 of chemo tomorrow. Not really looking forward to it since I’m enjoying my newfound energy , but I’m in good spirits.

tags: cancer, chemotherapy, ecovillage, gambierisland, hodgkin’s lymphoma, lymphoma, natural building, thetraveler

posted: 9:46 pm

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Just thought I would write a quick note to say I’m feeling much better. The chemo yuckiness peaked around Thursday/Friday, and by Saturday evening I was doing better. Today my condition is better on all fronts. Yes to feeling healthy.

posted: 9:59 am

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The last three days since my chemo treatment have been pretty intense. I spend at least half of the day in bed, sleeping or in semi-sleep. I’ve got dull pain all over. I’m constantly thirsty - I wake up parched and chug water from the bottle beside my bed, then roll over and go back to sleep. My eating and digestion are totally weird - like the wires are crossed. I can see why people lose weight - half the time I’m not sure if I’m hungry or not, and my gut doesn’t know what to do with the food I eat.

It feels like a bad hangover that just keeps going. No doubt that’s what is happening - my body is on massive detox mode. Everything must go! I’ve been having vivid dreams - a lot of people and places from my past, which is a sign to me that things are being let go.

I’ve had a bit of anxiety that the next six months are going to be just more of this, but it is usually a passing feeling - after all what can I do? Just be in the moment, don’t resist, let happen what needs to happen.

I had six friends give me a hands-on healing today, which was a beautiful and sacred experience. It was very comforting for my body, and gave me a renewed focus on the spiritual and healing aspects of this whole ordeal. Ultimately it’s all about letting things go.

tags: cancer, healing, hodgkin’s lymphoma, lymphoma, chemotherapy, spirituality

posted: 12:27 am

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It’s the first morning after my first chemotherapy treatment yesterday. Chemo consisted of me sitting in a chair in a room with three other patients (aptly called the “chemo corral” by another blogger), and having a pile of information dropped on me by a nurse, mostly about side effects of the four chemo drugs they are giving me: adriamycin, bleomycin, vinblastine and dacarbazine (ABVD), and the side effects of the drugs they are giving me to alleviate the side effects of the chemo drugs. Light sensitivity, nausea, lowered immunity, headaches, allergic reactions, diarrhea, trouble sleeping, etc, etc.

Then I just sat in a chair for three hours getting drugs by IV, typing on my laptop with one hand. Had a couple brief allergy-like reactions on the way home - runny nose and some skin redness, but those went away within a couple hours. Felt OK all evening. Woke up a couple times last night with mind racing, but was able to get back to sleep with some simple centering meditation. I was surprised by the amount of liquid by body was eliminating - it was obviously not down with all the wonderful chemicals it was fed, so I’ve been chugging the clear fluids to compensate. Besides all that I’ve just felt a general body fatigue, but mentally I feel fine, and I haven’t had any uncomfortable side effects. So yay - overall I feel much better than expected.

posted: 9:07 am

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I had a talk with my oncologist Dr Savage about the results of my tests today. My bone marrow biopsy came back negative (yay!), but the CT scan suggests possible involvement of the spleen (will have an ultrasound to confirm). And so I’ve been categorized as a 3Bth, where 3 means involvement on the lower side of the diaphram, B means that I have symptoms like night sweats, and th indicates fascination with and/or addiction to Tim Hortons food (Timmy Ho’s Syndrome). Seriously. I’ve started to eat there all the time and I really like their food ($20 in gift certificates pushed me over the edge - thanks Sxipsters ). In fact, I’m sitting in a Tim Hortons as I write this, having just enjoyed a veggie sandwich and chicken-noodle soup.

Anyway, my first chemo starts in an hour. Thrilled about the idea of shooting all kinds of toxic shit into my body. It’s like hiring an even bigger thug to beat up the bully that’s picking on you. Only the thug you hire is actually going to beat the crap out of both of you - you just have to last longer than the other guy.

posted: 1:20 pm

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posted: 5:17 pm

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Got a first taste of the berry-flavored barium sulphate shake required for my CT scan today. I would describe the taste in general as “berry good”, with barium sulphate undertones. Barium is a good X-ray absorber, hence its use in X-ray imaging. I had the impression it was radioactive, but this unfortunately is not true; it looks like I’ll have to gain my mutant powers some other way. Barium sulphate is also insoluble, and is completely eliminated by the digestive tract. Hence its inability to relieve my hunger, no matter how much I drink! In summary: the barium shake was a big letdown. On the other hand, I saw The Da Vinci Code last night, and I liked it way more than expected. So I guess I’m even.

posted: 11:03 am

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I’ve started a little project to help spread awareness around Hodgkin’s lymphoma. It’s a blog aggregator (a website which “harvests” or “aggregates” headlines from a bunch of other blogs), focussing on people who are in the process of kicking Hodgkin’s.

It’s a bit of an experiment right now - I’d just like to see how it goes. I’ve found that I’ve been interested in others’ experiences of Hodgkin’s, for many reasons, and so it might help myself and others to have these experiences be more accessible.

The name of the site is “Crabtails”, the crab being the symbol for the astrological sign cancer (get it!?:)).

You can access this site at nearlyfree.org/crabtails.

posted: 9:25 am

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