Cancer Chronicles: Excellent News

Hands up all those who know what it means when I mention CEA; if you're really desperate to know, you'll find the answer in Cancer Redux. Doctors refer to this blood test as a tumour marker, which is probably easier for y'all to know what I'm talking about. If you've been keeping up with the scanty cancer info I've been providing via this blog, you may remember that the chemo I started out with wasn't working and I switched to a different drug last October. At that time, the number of cancer antibodies showing up in the tumour marker test was over 100, which is an alarmingly high number. As of January 17, 2012, the number was 15, which I think is a bloody miracle. This is great news and proves the chemo is working. It's called Vectabix if you want to Google it. Like any drug, it has side effects but these are nothing like the ones I suffered with the previous drug. This one is designed to target cancer cells directly and it was explained to me that, since skin and hair cells carry the same receptors as some cancer cells, the side effects primarily affect skin and hair. Diarrhea is one of the other side effects. My body seems to be experimenting with all of them but they're manageable so far. The strangest of all of them are the hair changes. My eyebrows are now made of steel wool and the hair on my face (eyelashes and eyebrows), which has always been blonde and barely noticeable, has now darkened. My hairdresser told me the hair on my head is coarser too; hopefully it's not morphing into steel wool or rebar like the eyebrows. Some of the changes to hair can include lengthening of eyelashes and curly hair on the head. I should be so lucky. Longer eyelashes would be very welcome.



MORE WELCOME THAN THE MOUSTACHE I'M DEVELOPING!!!

For the first time in my life I have facial hair and problem skin. The skin changes include extreme dryness and an acne-like rash. I got through my teenage years without pimples and now it's time to pay the piper. If the fully-grown moustache is impressive enough, I may try for a beard next - one of those sinister little pointy ones regularly sported by men during the sixteenth century - Sir Francis Drake had quite a nice one.

As long as my bloodwork continues to show positive results, I can put up with the side effects and may even take on a new gig as the bearded lady when I can drum up enough energy to run away and join the circus. It has been mentioned by friends in the past that I could successfully take up a position as a dominatrix, so maybe I'll give that a try. Imagine, if you will, my buxom wee body encased in a rubber corset AND sporting luxurious facial hair to boot. I couldn't manage anything physical such as whipping or spanking though. Too tired for that. It would have to be verbal punishment. It would give me great pleasure to verbally whip people who abuse the English language with words like EXpecially. That's a whole other blog subject, I'm afraid.

At Last - Cancer Update

Here I am, alive and well and I'm sorry if my recent long absence from blogging has had anyone worried about my status(ie alive or dead). No - just too damned lazy to write.

After months of vomiting and feeling weak as a newborn kitten, I was told in July that the chemo I was getting was to be stopped, both because I wasn't tolerating it and because it wasn't working. A recent CT scan had shown the cancer was progressing and my CEA numbers were up (rememember the carcinoembryonic antigens from the first thrilling instalment of Cancer Redux? So it was on to Plan B, which required testing an alternative drug on my cancerous tissue. This had to be done by the BC Cancer Agency, who demanded a biopsy. Three months and several frantic phone calls later, I finally had the biopsy of a lymph node in September and approval to start treatment was given. I had the first one last week and all went well. This one targets cancer cells directly and a scan after two or three treatments will indicate effectiveness so I won't be hanging around wondering about its efficacy.

The side effects of this one are fewer and not as nasty as the last one, which means I'll no longer need to keep a vomit bucket within reach at all times. As with the other chemo, there's no end date, unfortunately. Regular scans will monitor effectiveness and the best I can hope for is remission. Keep me in your prayers people, please. The long respite from the other chemo (almost two months) allowed my body to heal itself and repair some of the damage done by the other drugs rampaging through my system, destroying everything in their wake and I actually feel quite healthy now. I've always had a propensity for fretting and this is the biggest worry I've ever had in my life so I've had to develop tricks to stop myself from going crazier than I already am. Distraction is the most effective trick - usually with books and television and when I've had enough of those, I resort to daydreaming about a whole new life for myself. A life where my left hand and arm work, where I can walk safely and easily without my leg brace and I wear a pair of clean, healthy cancer-free lungs and lymph nodes. And of course, my brain is free of epilepsy so I can drive and be independent. This must be where my body was before I took it to its new life in Edinburgh five years ago. Actually, that's not quite true; at the time of my departure, there had to have been an infant tumour growing in my colon, waiting to be discovered in an Edinburgh NHS clinic. That one didn't cause me nearly the extent of stress the lung ones have because I knew excision of the tumour would go a long way towards solving the problem. Excision of the lung tumours isn't an option because they're distributed throughout and the only surgical option would be to remove both lungs which, of course, isn't practical. I know I'm kind of like Wonderstroke and all but not without me lungs.

The Horrors of Chemotherapy and Other Stories

The latest information from my oncologist is that there's no cure for this cancer and it just has to be managed like any other chronic disease. The average life expectancy for this type is two years according to statistics he says. This terrifies me. He must have told me this before but I probably forgot. I found this out when I asked for a prognosis. Managing cancer as a chronic disease means ongoing chemotherapy treatment indefinitely with hopes for remission. I skipped the last treatment and have had a wonderful two weeks of feeling well physically. The treatment before that was a nightmare. I've never felt so ill and weak. The almost constant vomiting and diarrhea, combined with several nights without sleep left me so weak, I could hardly walk. That's why I decided to skip a treatment. I've now recovered from the assault on my poor old body, thank God. I'm already dreading the next treatment on March 9th. My brother won't be able to take me anymore so I'll be using taxis from now on. There is a little spark of good news among the nightmares though and that is that my CEA numbers have been steadily declining. A CT scan done on February 15th will tell us how effective the treatments have been and I'll probably get those results the next time I see the oncologist (probably later in the month).

During the worst of my last chemotherapy-induced illness, I became very depressed and wondered if it was worth going through when it affects my quality of life so negatively. This is not a state of mind I want to encourage, however. My tactic for dealing with the cancer is to try to forget about it by distracting myself with books and not talking or thinking about it. That's hard to do when the chemo side effects are a constant reminder though. I'll just have to try harder, I guess.

I haven't been well enough to do my usual Fridays at the cat shelter for months and should have gone during this two-week hiatus but forgot to arrange transportation. I really miss going and will definitely go next time I miss a treatment. Because I feel so well and actually have an appetite, I'm having dinner on Sunday with my friends from work and lunch with my brother tomorrow. I plan to stuff myself on both occasions.

To try to improve my general health, I want to start preparing meals for myself instead of eating in the dining room here but I can't afford to at the moment. My rent here includes meals whether or not the meals are taken and rent is based on the previous year's income. My current rent exceeds my monthly income by about $500.00, which leaves nothing for groceries or anything else. My prescription costs are astronomical too - cancer's a very expensive disease because the cost of effective anti-nauseants is high. I've applied for a temporary rent reduction but it's a long, slow and painful bureaucratic process. Part of my rent is subsidised in a small way by the local health authority and this is why the rules are so inflexible. The food here is adequate but not good quality as much of it is processed, eg frozen quiche. There's more of a focus on meat than I'd like too as I'd prefer to be eating more of a plant-based diet, which I think would be better for me. Getting groceries is a bit of a problem too, although I did manage to find a store where I can order online and they'll deliver for a fee. It's a pretty expensive store though, catering to Vancouver's west end, where it's very expensive to live so incomes are probably much higher than the pittance I get from a long-term disability insurer. Thank goodness my employer provides long-term disability insurance or I'd be in the gutter living in a paper bag or having to break into the savings I've kept for old age - provided old age is in my future.

Well this is possibly the most depressing post I've ever written in this blog. I much prefer my essays to be uplifting but trying to be cheery when I'm not is really hard work. I'll try for more smiles next time - promise

Cancer Update

This update isn't good news, unfortunately. The latest information from the oncologist is that this cancer is stage 4 and not curable. The best I can hope for is that the chemotherapy will shrink the tumours and prevent them from growing. The treatments are indefinite, meaning I'll need them for the rest of my life to keep the cancer in abeyance. My CEA number has dropped (see Cancer Redux for explanation) but the number will never reach zero. Even people without cancer don't have a zero CEA. It seems I've had the wrong impression about this cancer and its treatment all along. I was so upset during the first appointment with the oncologist that I just couldn't take in everything he was telling me.

The side effects from the treatments have been pretty bad and I'm very ill in the week following a treatment; vomiting, diarrhea and constant nausea. The drugs they give me to counteract the side effects don't really make any difference, so I've just had to find other ways to manage all the unpleasantness. During the second week following treatment, I start to feel better and even recover my appetite and I was extra lucky on Christmas day to be able to enjoy Christmas dinner at my brother's. I've only lost 3 kg so far and certainly don't look like a cancer patient. I still feel as healthy as ever and haven't experienced any symptoms of the cancer so far. When I heard that treatment would be ongoing, I was pretty distraught but now I realise that lots of people live with cancer and view it as they would any chronic disease, which is how I'm trying to look at it. It's like someone with MS or diabetes - always there but manageable. I just wish there was an end to it and to all the appointments. My brother was able to take me to the chemo appointments until before Christmas but he won't be able to do that anymore so I'm back to having to rely on Handidart, which is a nightmare because of all the waiting involved. I could use taxis but they're too expensive, even though I live very close to the hospital.

When I first found out about this cancer, I was talking tough about kicking its ass but that was before I knew it had such a firm grip on me. Even so - I'm not going to let it win. I'm a tough old bird and I've come through a lot in the past three years so cancer doesn't have a chance in hell of getting me this time. I'm focusing on getting healthy again and will try to continue to live my life as it was before October 1st. Unfortunately, cancer brings with it a deep depression that's hard to shake, which I remember from the last time. This, more than anything else, pisses me off because I worked hard for two years to get a handle on the stroke-related depression and now feel like I'm right back where I started. Just more fighting, I guess. I was able to reach a point after the stroke where I felt normal - even happy again and I'll just have to do it again this time. I'm lucky not to have something debilitating like the stroke was so maybe it won't be such a hard slog to get back to feeling like me again.

Cancer Redux

Bloody hell!!!

In the three years since treatment for colorectal cancer and a stroke, I was finally feeling healthy again and thinking I was out of the woods in terms of serious illness.

Because one of the chemo drugs caused the stroke, I didn't finish all of the prescribed chemo treatments but was confdent that surgery to remove the stage III tumour had caught all the cancer cells. Unbeknownst to me,however, one or more of the little buggers survived and eventually made its way to my lungs. This was discovered because of a blood test (CEA test (carcinoembryonic antigens) was being done every few weeks and the one I had in June had a higher counnt than usual so my GP sent me for a CT scan for a close look at my innards. That was when the nightmare struck again and I was sent to an oncologist for diagnosis of a patch on the lung. He explained that I had several small lesions on both lungs, which, in his opinion are malignant. He bases his opinion on the CEA number and no biopsy has been done. I had no symptoms so without the dagnostic testing, no-one would have known there was a problem. The plan is to shrink the lesions with chemotherapy (a different drug from the one that caused the stroke) and I'm currently on the third treatment.

The chemo has been making me very sick so the dosage has been reduced by 25%. CEA tests and CT scans will be used to see if it's working so the treatments are scheduled indefinitely. 48 hours every two weeks. A CEA test was done last week and I'm anxious to know what the count was. It measures the number of cancer-fighting cells in my blood and the reading must go below 18 in my case to show the treatment is working. A CT scan will only be done if the count doesn't go down.

At first, I was shattered by the news but now I'm just disappointed that my body's let me down again.

I try not to think about it too much and that stops me from dwelling on it, which might lead to self-pity and all-consuming worry, both of which I want to avoid at all costs. I've kicked cancer's ass before and will do it again. Cancer chose the wrong person to pick on this time; the strokester won't put up with it!

Fridays

Every Friday for the past several weeks, I've been volunteering at the cat sanctuaryoperated by the Richmond Animal Protection Society (www.rapsociety.com). I knew about the cat sanctuary for several years before actually visiting it about three years ago. I was reluctant to go because I was afraid it would be a sad place of cages containing desperate cats but it's nothing like tha at all. In fact, it's nothing short of a cat paradise, with a huge outdoor compound, paved courtyard, gardens and little cat cabins containing bunk beds. There are over 900 cats living there and what's even more remarkable than that is that the place is operated by volunteers and donations. Most of the volunteers spend their volunteer time doing practical work like cleaning, feeding, scooping litter and medicating those who need it. As my physical abilities don't stretch to practical work, my job is to provide the attention and affection the other volunteers usually don't have time for while providing the practical care. I have the best job of all as I just get to sit and wait for the cats to come to me for a wee cuddle and chin scratch. And come to me they do! There are usually two cats on my lap and several more at my feet waiting for a vacancy.

Last week, I was in one of the buildings housing cats with feline AIDS and had two strapping big lads (Fergus and Tyler) on my lap within minutes so poor little Annie, a tiny tabby had to fold herself into a neat little package on my chest, where she stayed for well over an hour. I was almost deafened by the raucous purring of the three of them.

I've spent enough time with the sanctuary residents to learn their names and personalities and, like people, they're all very different. Georgie was the first cat I met and he immediately planted himself on my lap and each time my hand stopped scratching his chin, he reminded me with his rusty hoarse meow that he was still there and waiting for attention. That's Georgie in the photo with me. While I was talking to Georgie, Franko draped himself across the table in front of me, reaching out to bat my hand every now and then to get my attention. And then there's little Bunny, a little tortoiseshell girl who can't stay away from me but bites my hand when I try to pet her. Fortunately for my hand, Bunny doesn't have a tooth in her head and her hard little gums clamp down on my fingers in vain. She often sits on my lap and will growl at any would-be interlopers. Then there's skinny little Martin, an elderly gent living out his days in bliss. He's between 12 and 15 years old and his poor old body's giving in to the vagaries of old age so he's winding down. When I first met Martin, I thought he'd been rescued from an abusive, neglectful owner because he's literally skin and bone with a few tufts of fur. I'm glad he's in a place where he can receive medical treatment for his failing kidneys and live out the rest of his days in comfort, surrounded by love and kindness.

I feel so lucky to be able to spend time with these animals and the few hours I'm with them every week just light me up. I love it so much, I don't even mind the 2-bus journey each way.

Gratitude

Despite my physical shortcomings and losses, I have a lot to be thankful for. Some of my blessings are: my independence, my mobility (a lot of stroke survivors end up bedridden, incontinent and speechless, some with mild dementia. I, however, have a life I couldn't imagine as I lay helpless in a hospital bed three years ago. It might not be the life I'd like to have but it's a lot better than the one I thought I was going to have on August 17, 2007. Other things I'm thankful for: my son Evan who regularly makes sure I know I'm loved unconditionally, as do my sister, Maureen and my brother, Eric. Thanks to Eric for driving me to any medical appointment I can't get to with Handidart or taxi. I'm so lucky to have a friend like Petra, who can always be counted on for the help I hate to ask for and who unfailingly reassures me that she enjoys spending time with me so that helping me isn't a sacrifice for her. My friend, Rona is a huge blessing because I know I can count on her for anything. When I went to Alberta to stay with her and her husband last year, I was frightened about leaving the security of my routine here and she looked after all my personal care needs to take my fear away, leaving me free to enjoy her company and stop worrying about inconveniencing her. She's the kind of friend everyone should have. Loyal and trustworthy and generous. In the twenty-plus years we've known each other, I've always known I could just pick up the phone, tell her what I need and if it's within her power, she'll make it happen.

It's always a mistake to thank people by name, Academy Award-style because somebody's sure to be left out. In my case, it's a mistake to name names because thinking of Evan and Maureen inevitably brings tears to my eyes because I miss them so much. My next task is to pluck up the courage to navigate an airport so I can visit the people I love and miss so much.

All in good time. Navigating an airport with luggage, a cane and one non-functioning hand will be difficult but not impossible for SuperStroker. And there's always the kindness of strangers, who will usually help when asked. All I have to do is ask and strangers can always be counted on to give me a hand.