HCV Treatment Journal

March 12 - Moving On

2006-03-12T09:26:00.000-05:00

Starbucks coffee and maple scone. Now part of weekend life. Also now part of weekend life, about once monthly, is blogging. I’ve come to enjoy putting a blog together. However, this blog was set up to document my HCV treatment course and that is completed. Successfully completed! It seems reasonable to close this blog. Moving on is important, both from the perspective of maintaining a hepatitis C focus on this site, and for personal development. This will be the final post for the HCV Treatment Journal. I’ll leave it online, with the hope that it may be useful for others having to face similar circumstances.

I’ve made many wonderful connections with some truly amazing people through this experience. Will continue to monitor both Ron’s forum and the SLO hep C message board, and will be checking in on the personal blogs of other hep C sufferers (links on sidebar). Want to shout out a huge thank you to everyone – you’ll never know just how much you’ve helped me get through this.

Will be setting up a new “Sue, Toronto” blog, to continue blogging about things in general: yoga, walking, Toronto, photos, the randomness of the universe, Toronto, etc… because I really do like to blog!

New blog site is www.neosuetoronto.blogspot.com

Really hope to hear from some of the people who drop by this site and, of course, anyone is welcome. It’ll probably take a little while until a reasonable post gets put together, but I’ll definitely be there.

All best wishes to everyone embarking on, going through, or having completed the HCV treatment journey. Not totally fun, but a journey that may open doors and bring forward perspectives not previously considered and unexpectedly mind altering. A very positive experience after all.
Sue

March 4 - 6 Month Post-tx PCR = NEGATIVE

2006-03-04T08:04:00.000-05:00

Well, that’s the very good news that I’m pleased to share this Saturday morning, with a Starbucks coffee and lemon scone in hand. Negative. That’s the last pcr testing that the government will fund, Ontario feeling that if you’re negative six months after finishing treatment, you’re negative for good. I feel inclined to share their optimism, feeling mighty optimistic myself. However, I will arrange to get tested annually, realistically disinclined to ignore the possibility of relapse.

Other hepc-related business – went for my annual liver ultrasound, which was just perfect – liver looking good, no cirrhosis, no portal hypertension and no masses. Was scheduled to do the “health care worker as patient” research interview yesterday morning, however, am sick as dog with some kind of cold, so have deferred until Monday morning, when I plan to be completely well again.

Cuba week long vacation was excelente! Resort was small, very clean, very nice, had great staff, reasonable food, fantastic white powder sand beach and a turquoise blue, clear ocean. A week “away from it all” was so good. My sister Sally and I flew with Sunwing and for the vacation charter concept, they were terrific, certainly surpassing other charters I’ve flown with previously in virtually every way. Weather was variable; we had about 3 cloudy days with some rain and about 4 knock you on your back scorchers. Managed to obtain a respectable amount of light tan and freckles. Sally, who inherited our mother’s French Canadian skin (as compared to the pale, freckled stuff I received via our Scot paternal line – thanks Dad!), is now a darkly tanned goddess. Very mixed crowd – hotel is German chain and there were lots of Canadian, Italian, German, French and British – it was great! Everyone was extremely tolerant of my continued pathetic attempts at Spanish. Kept up with daily yoga practice in the exercise facilities. The cloudy days allowed us to explore the local area, which is quite rural and beautiful; we were in the Guardalavaca area. This is the second time I’ve been to Cuba on holiday and it is lovely, but I wouldn’t want to live there. Flying into Holguin as you land at the airport, there is a long, tall white billboard/fence on which is printed in long, tall red letters “socialismo o muerte” – sort of says it all. Pics this month are Cuba vacation shots (a little variety from the regular Toronto fare).

Return to work, home and the real world now makes Caribbean vacation a distant dream. Work very busy, particularly with several of us hit by this illness. Suspect it’ll be awhile before work settles down. Lots of stuff going on with both of our kids, which is keeping us busy too. Phil off to Italy and Greece with his school music program in a week and we’re trying to get prepared. He turns 16 in two days…. man, the time flies….

Listening to: Arctic Monkeys (thanks to Banger and others on Ron’s forum, who are turning me on to tons of new music with a British/Euro slant), Boards of Canada, Rachid Taha and De-Phazz. Continuing yoga, with a restorative class on Wednesdays and, on Saturdays, a very interesting yoga practice with focus on Qigong breathing. Also still keeping up with Shiatsu massage every 2 weeks, convinced it is one of the big positives discovered during treatment.

It’s been freezing here (-20 C pre-wind chill this morning on our deck), but there is little snow. Still walking everywhere and am truly looking forward with longing to Spring, with the equinox and the balancing of the light and dark approaching.

Sue

January 28 - Waiting Game

2006-01-28T09:42:00.000-05:00

Saturday morning, venti starbucks bold coffee and cinnamon streusel coffee cake. Ready to embrace the day. The usual weekend fare for life in the working world: laundry, cleaning, grocery shopping. However, it’s absolutely balmy outside (2 C), so am looking forward to doing some yoga and then heading off for a market walk to get the shopping completed. My sister Sal is going to head downtown and join me. There’s no snow and the sun is actually shining! Having my weekends completely knocked out for six months on treatment has provided me with a unique appreciation for being able to accomplish routine tasks on Saturday and Sunday. I appreciate every weekend moment.

Tried to obtain my 6 month post treatment pcr test results yesterday, but nurse Sharon is off on a business trip, my specialist has moved to Singapore and the back-up staff were unable to locate my chart. Ah well, I do recognize that this is just how things go sometimes, particularly on a Friday. Will call next week once Sharon’s back. In terms of my hepatologist, was aware that he was leaving and, in some ways, this works out well. Had been considering transferring to the liver centre within the health care institute where I’m employed and will now do so for follow-up care. When first diagnosed, I was reluctant to be seen at my place of work, as I wanted to maintain confidentiality until figuring out my own head space around all of this. Now, much more secure in myself, it just doesn’t matter. Our institute is among the best hepatitis c service providers in North America and I’ll transfer to them. So for now, play the waiting game. I feel so darn great that the thought of relapse is, well, it’s terrible. Am trying hard not to go there, but actually getting the pcr results will sure take away some edge. Just want to know.

Has been a busy month. Two birthdays: our eldest son James turned 25 (wow!!) and my youngest sister Sally also celebrating. We had a party for each at our home on separate weekends, so it’s been lots of dinners, cakes and presents. All wonderful! Big news this month is that James has been accepted into a program he’d wanted at the University of Toronto. We are so proud of him. It’s my alma mater, so this is especially nice for me. My grandparents were also U of T alumni. Carry on the tradition James! Pictures this month, therefore, are of the University of Toronto (http://www.utoronto.ca/), originally founded in 1827, so an eclectic mix of architectural styles covering a multitude of downtown city blocks, running from Spadina Avenue to University Avenue in East-West dimension and from Bloor Street to College Street North-South. It is just slightly North of us and we frequently take advantage of its proximity to walk through the beautiful campus.

Music on the discman this month: Damian Marley, Sean Paul, Shakira (solo en Espanol por favor), Be Good Tanyas (thanks James), Postal Service (thanks Sarah), and still some Imogen Heap and Stars (Ageless Beauty gorgeous).

Am planning a few days away in February on a Caribbean or Mexican beach. Midwinter in Toronto, this is an absolute mental health necessity. Ron’s too busy to get away right now, but I may go with my sister, or friend, or maybe for 3-4 days on my own. Am getting excited just thinking of the ocean, the sand, the music and especially, the warmth.

Today is January 28th – my mother died quite some time ago – today is her birthday. I will light a candle. I’m thinking of you, mom.

Sue

December 31 - Happy New Year!

2005-12-31T11:13:00.000-05:00

Starbucks coffee and a lemon-cranberry scone beside me. It is a happy new year! Happy because it’s over and an end to a year that was largely consumed with chemotherapy for a viral disease is good. Also happy though because of the insight and perspective gained over the year. Really do believe I am a better person for what this year has caused me to look at - morbidity, mortality, priorities – all in a subjective sense – important things to consider. Without what this year has given me, I might not have directed much subjective consideration to these things at all. It is one thing to experience sickness and death objectively in others. It is quite different to look at them in terms of oneself. I will hopefully be better professionally because of this, now possessing empathy as well as sympathy. Am also hopefully improved in my personal life, with renewed realization of how exquisitely important the people in my own world are. As well, I’m now aware of how we who face similar challenges can form common bonds. There are people with whom this past year has been shared, in terms of hepc and its treatment, who have affected my outlook, challenged my beliefs, provided me with support and made me realize that I am not alone. I am so very grateful for their company.

Things busy as usual. The months between end of summer and end of year historically the busiest in my field, so we are overwhelmed at work, but continue to give each case the attention it deserves. There is an annual parade through Kensington Market to mark the solstice, with fire-breathers, costumes, lanterns and music, celebrating the return of the light after the darkest night. My kids are too “grown up” to want to go with me anymore, but I went on the evening of the 21st, with my candle, and enjoyed it! We celebrate Christmas and had a wonderful few days with family, friends, gifts and much, much turkey, with all the trimmings. Received several shiatsu massage gift certificates among the presents (people do know what I like), so am relishing a blissful next few months. Also went to a different yoga class during the break between Christmas and New Year, as my regular studio was closed, and it was quite good. Ron and I are having a quiet New Year’s eve – he’s been recently diagnosed with an ulcer and I’m fighting a cold, so we’re just going to keep things relatively low key. Might have a few friends dropping by. Will toast 2006 with my club soda and orange juice!

Music continues to spin in the discman in my walks to and from work and around the town. Still on a bit of an electronic/ambient run, favouring Thievery Corporation, both Richest Man in Babylon and Cosmic Game, plus Zero 7, Imogen Heap, and Jon Hopkins (really hard to get in Canada!), as well as some mostly Canadian alternative including Broken Social Scene, and Stars. Around the town has lately been a much less snowy and much more traditional Toronto winter, sort of hovering around zero degrees, grey, wet and slushy. We had a lovely full day of sleet, a combination of rain, snow and ice, on Christmas day. Today, however, the snow is falling in big, white flakes, with about 6 cm already accumulated. Am starting to feel the need to find a warm Caribbean beach….

January 10th will be the six months post-treatment pcr testing. Obviously, will just wait and see and am surprisingly unstressed about it. What will be. There is nothing now that can be done to influence the result.

Pictures this month of Chinatown (conveniently located right next door to Kensington Market and, therefore, also on my way to work). Is busy, fun, crowded and if you want to purchase it, it can be found there. Enough said. Corner of Dundas and Spadina always reminds me of a scene out of Bladerunner.

My resolutions are to find the positives, to learn, explore and to evolve. I hope that 2006 brings happiness and health to all. Happy New Year!
Sue

November 19 - Autumn becomes Winter

2005-11-19T13:24:00.000-05:00

Having venti bold coffee and Starbucks seasonal bliss bar this morning. Bliss bar is pretty sweet and pretty good, sort of a dense, slightly ginger cake, with icing containing bits of cranberry. Yum. It’s cold out! Snowed yesterday for the first time. Sweaters, boots and winter jackets, along with gloves and hats, all finding their way to the coat hooks and shelves by the front door. The walk in to work is now chilly and I’m moving more quickly to stay warm.

Four months now (a third of a year!), since completing combo. Went and had my hepatitis A booster immunization (received first shot just before treatment started; am already immunized for hepB through work), as well as my flu shot. Had the 3 month follow-up visit with nurse Sharon and my physician, and all went well. No call back re: the blood work, meaning that everything looking good. At the appointment, nurse Sharon asked me if I’d participate in a study researching health care providers as patients. I’ve agreed to (because I’m just so sure we make the best patients – not!). Will be interviewed at my appointment in January. The 6 month post-treatment pcr at that time is the kicker, obviously. Am trying to focus on other things and not stress about it. Feel so good, to find out the virus had returned would really knock me back. Mustn’t think that way, will just wait and see. Now that so many of us have reached the telling time points around treatment, my mindset is somewhat paradoxical; so happy for those who’ve cleared, so saddened for those who have not.

Life is moving and shaking. Had a very fun Halloween – attended a costume party with friends, thrown by a major Toronto anime group and the costumes were amazing. Dressed up, ate, danced and had a lot of fun. Have contact lenses for the first time - bifocal contacts – totally cool. The periphery around the pupil is dedicated to distance, with close up vision more centred over the inner pupil. The brain adapts to it. Amazing. Attending yoga twice weekly now: the Flow/Hatha session that Barb and I go to Wednesday’s after work, and then a pretty intense, Ashtanga-based class on Thursday evenings with my friend Ligia. Still having Shiatsu treatments about every two weeks. Allison says that my flow is unbelievably better and now concentrates on stretching and energizing, as compared to the healing and maintaining she concentrated on while I was on treatment. Work is crazy busy. We’ve just incorporated some very new technology that’s taking some getting used to, but it’s exciting and fun to be part of it all. The team of people I work with are really wonderful, the work I do is fascinating and I look forward to going in each day. Feel very fortunate.

Have been inhaling music. James was recently kind enough to put together a trip hop “variety pack” cd for me. Purchased the “Garden State” soundtrack and I can’t take it out of my discman – has everything from Thievery Corporation to Frou Frou to Nick Drake. It’s really good. Also recently picked up cds by Feist and by Bedouin Soundclash. Loving it all.

Still checking the blogs and forums about once weekly. Like to hear how my hepc compatriots are doing. Will keep going strong and staying positive, attempting to minimize the waiting game around pcr testing.

Pics this blog are of Kensington Market over the last few months. It’s probably my favorite part of Toronto, so gets first city show. Will focus on a different district next month.

Sue

October 15 - Flying

2005-10-15T10:09:00.000-04:00

Saturday morning with grande bold starbucks coffee and a pumpkin scone (being seasonal). Some habits die hard! A lovely Toronto autumn weekend, sunny and crisp.

Is a year since I was diagnosed with hepC and almost three months since completing combo therapy. Now that treatment is finished, there’s not as much relevant material to post in the blog – life is flying and my world has returned to the hectic pace of work deadlines, bringing up teenager, getting together with friends, keeping the house together, and, of course, development of mind and body. There are obviously things kept, hopefully the positive, growth-oriented concepts that must accompany such an experience. There are also things lost, or in the process of being lost, that I am happy to see go. I am no longer dependent upon water for normal existence (or whatever optimal treatment existence might be characterized as), and while I have kept up with a fair amount of “clear fluid intake”, no doubt a healthy thing, multiple litres of water each day is no longer required. Appetite has curbed and I am no longer hungry all of the time, as compared to feeling continuously starving while on treatment. Weight has pretty much maintained throughout the process and am about 50 kg now, as compared to 51 at treatment onset, so the hunger thing during treatment was likely a good physiologic response to try and keep the weight on. Hair still isn’t exactly thick and luxurious, but what’s there seems to be growing and is in much better shape, plus no more is falling out. I am optimistic that what fell out will start growing back in soon.

One of the big things that I’m pleased to lose is the “sick person syndrome”, that I believe is a normal response to being diagnosed with an illness, and especially to undergoing treatment. Despite trying desperately to lead as normal a life as possible on treatment, it wears you down and with that comes associated feelings of helplessness, dependence on others, isolation…. a quasi victim mentality. Although I have learned to accept assistance and love from others much more willingly as a result (one of the big positives), any victim status is happily left behind. I am reveling in my autonomy! This is not, for me anyway, a completely smooth transition and there are adjustments to be made during the shift from one mindset to another, as well as to physical reactions to the medications vacating the building. It is becoming much easier as time goes on.

We closed up the cottage over the Canadian Thanksgiving and the autumn colours were possibly the best ever seen. Looking out across the lake was brilliant, with oranges, reds and yellows lighting up the forest before the long, cold winter. It was cold up there at night, below zero, but the days were warm enough. My sister Sal and I cooked up the mega-turkey dinner, which was delicious. We kept the fire going 24 hours in the big fireplace and the wood stove in the kitchen was kept stoked throughout the weekend. It was wonderful to spend time with my father, who’s now returned to the States.

Finally figured out how to do the flickr zeitgeist thing, so there is a collage of photos from summer cottage posted on the sidebar. If you click on one, it should bring you into the photostream. Am going to try to load some of the cottage fall colours – downtown Toronto shots to come. Still having fun with the digital (another plus from treatment), and now seriously desire a better camera. Christmas is coming….

Have been keeping up with the blogs, plus some new ones, about once weekly, as well as with Ron’s forum (www.ronmetcalfe.com/hepcforum) and the slohepc forum (http://www.slohepc.org/). Am so happy to see some familiar people coming to the end of treatment. All my hopes and prayers are with them for svr, health and happiness.

Sue

September 15 - Healing

2005-09-15T20:42:00.000-04:00

Eight weeks now since treatment ended. Feel wonderful! Good energy, good attitude, grateful for what’s been gained, beyond viral response. Certainly, my perspective has been enhanced and, without effort, I still notice the beauty in the world, visual and otherwise. This is nice – a part of me had been suspicious that this renewed appreciation of life and living might be a hidden lovely side effect of treatment, that I would somehow lose it as the drugs left me. Fortunately, it remains.

The last month has brought end of summer and beginning of another cycle of school: James and Annikka both starting new courses and balancing work at the same time, and Phillip now in grade 10. Amazing how the time passes. It will be one year next month that I was positively diagnosed with hepC. Treatment seemed agonizingly slow to start and painfully tedious to get through, but retrospectively the last year has flown by. Perhaps this is part of the healing process: part of separating myself from the thought of being infected with a “communicable disease”; part of moving away from the distaste of treatment.

Healing is generally happening at a pretty good pace! Social life has picked up immensely. Ron and I had a great weekend out in London, Ontario with friends. Finally seem to be able to get out and about with people who I’ve been neglecting for months. More energy is available and I have hugely increased physical strength – can now carry two bags of groceries in knapsack and more in arms when walking home and shopping through Kensington market – absolutely impossible a short time ago. I’d lost a little weight towards the end of treatment, but it’s returning nicely. Had Shiatsu massage with Allison Tuesday, who commented that I seemed less thin and drawn, and that my colour was much, much better (as in I now have some). Will definitely be continuing the Shiatsu therapy. It was invaluable for me during treatment and I continue to reap benefits.

Also keeping up with yoga, with some limitations, i.e. I tried to do a Bikram class this past weekend and did well for about the first 45 minutes, after which blood pressure started climbing and, at about 60 minutes, had to stop, relax and cool. Perhaps body just not up for hot yoga quite yet. Am convinced, though, that I unloaded a ton of toxins in the process. Will stick to room temperature Hatha yoga for now, both at home and for classes. Yesterday, attended a “yoga for you” class at a recently discovered site in the market (www.pureintent.ca), and loved it. Seems a perfect class for the recuperative time my body and mind now require. Will continue there weekly, supplemented by my home yoga, for awhile.

Still awaiting return of hair growth. And waiting. Cut it short, short. Was slightly traumatic at first, but am adjusting and it would seem that lots of people really like it this way. Am having way fun using product to create different effects. During treatment, it started coming in completely grey/white, but that’s something that would have happened eventually anyway and is easy enough to deal with (hello L’Oreal). Tooth situation seems to be straightening out – is actually not tooth abscess, but it would seem there’s some bone/gum loss from the chemo, so it’s more of a periodontal thing. Anyway, is much improved. Hot flashes have returned (were gone during treatment), but are becoming more infrequent than a couple of weeks ago. Think that’s about it for residual icky stuff. Everything else good!

Awaiting the autumn. Has been continuing hot here, up to 35 degrees last week. Cooling now though. Wonderful in the morning walking in to work, with sun and a breeze, squirrels knocking chestnuts out of the trees onto the streets and a few progressive leaves starting to turn colour at their tips. Autumn is beautiful here, with crispness, colours and smells that remind you that you are alive.

My sister Sally is picking me up at work tomorrow and we’re driving up north for a weekend at the cottage, just the two of us. Will be lovely. The following weekend, Ron, Phil, his friend Mike, and I, with Sal and her daughter Sarah, heading up again for the weekend, with a “Fall Fair” being held in the local town – is always great fun. Am hoping to be able to cottage maybe once more prior to heading up for Thanksgiving in mid-October, when we’ll close up for the winter. That final weekend always a surprise – has been warm enough some years to swim, and other years so cold it snowed. The autumn up north will be at its spectacular multicoloured best over the next month, or so, and I want to incorporate as much of it as possible. The cottage is that place where reflection, consideration and growth all seem to flow.

Sue

August 20 - Undetectable!

2005-08-20T09:04:00.000-04:00

So, wonderful, fabulous news regarding my post-tx pcr: undetectable hepatitis c virus (sensitivity of 50 IU)! Obtaining the results was not as straightforward as expected. Arrived at 7:30 a.m. appointment with nurse Sharon, who advised that the Ontario Ministry of Health and Long Term Care had not sent the results of any hcv pcr testing from any of the clinic’s samples submitted since the end of June, evidently short staffed and backed up with tests. However, pretty sure that the pcr had been read by now, I managed to procure a direct telephone number for the Ministry virology lab. Within an hour, they had the results to nurse Sharon. Bloods are looking improved, particularly hemoglobin, but white cells and neutrophils continue to be pretty low. Sharon assured me that these will come up. Also assured me that my hair will indeed start growing back in at some point within the next few months and that I can look forward to having a lovely “hedgehog” head look as the bristling new growth comes in. Am actually looking forward to this!

Post treatment almost a month now, with less immediate “normal” feeling than I’d hoped for, but still much better than on combo. I’m moody, more so than when on treatment. Discussed at yesterday’s appointment and was advised that the rebalancing of my neurochemistry, as well as hormones (as treatment put me into postmenopausal status), are probably having a lovely general effect. This should abate. Great developments include that the original arthritic flare I experienced has completely stopped and I’m back to lots of walking and my total yoga routine. Have energy to burn! Brain fog seems permanently gone. Have unfortunately developed a tooth abscess, so am back on antibiotics again. They will monitor and book dental surgery once my immune status improves (i.e. wbc/neut counts come up). Meantime, taking the antibiotic capsules, rinsing with salt water and using clove oil for pain management. While at dentist yesterday, was advising dental technician of my new, improved hcv status for their records and she asked about my chemotherapeutic regime. It turns out she’s just started interferon chemo for leukemia and is on the same redipen that I was using. We talked for a while and exchanged telephone numbers. The connectivity of the universe never ceases to amaze me.

Cottaging was wonderful, with the best weather that’s probably ever been experienced in Muskoka, Ontario for two consecutive weeks! It was hot, beautiful, relatively bug-less (a very good thing given the propensity of West Nile virus in mosquitoes within Ontario), with the lake at a balmy 82 degrees F. We had one day of rain only. Spent quality time together with family and ate more food than is probably humanly possible. A friend of Phil’s was also up North, so he stayed with them for a couple of extra days and took the train down to Toronto on Wednesday. He’s off to Montreal today to visit my sister and her family. Next weekend, he’ll fly to London, Ontario to spend the final week before school in two homes, with invitations from both my friends Barb and Joan, who each have boys around the same age. Ron and I will pick him up the final week from Joan’s. Busy boy.

Back to work, back to life, moving with increased speed, more and more projects, plans and concepts building. What an incredible six months. How much it’s given me to take forward. How happy I am that it seems to have been worthwhile. How hopeful I remain for a sustained response.

July 30 - Cottaging

2005-07-30T09:04:00.000-04:00

Well, two weeks since last interferon shot, one week since last ribavirin capsule. Performing the Saturday morning ritual: tall bold Starbucks coffee and sticky bun with butter. Had blood work done for my end of treatment viral load pcr July 22, courtesy of nurse Sharon. Took her a thank you card and a little gift (a soy candle). Figure that she mostly hears our whining and complaining – might be nice to have something positive. Will find out my results mid/end August, once back from the cottage.

It’s nice to be done with treatment. Some things are great, others not so terrific…. get those out of the way first. Hair continues to fall out. Went and had another cut yesterday. Am now between chin and ears. Stylist is wonderful; only wets hair, doesn’t wash it, cuts and leaves it to dry on own – end up with cute style that looks okay with no maintenance and follows the (minimal) wave of my hair. Also, only charges me half price! Have had a huge exacerbation of my rheumatoid arthritis over the last week – am told by physician that this is not uncommon. Evidently, interferon may act as a protective agent in terms of some illnesses during combo treatment, hence my having absolutely no arthritic pain during those six months. Am surely making up for it now! Yoga has become a meditative experience, with very minimal gentle stretching. Using ice packs, tiger balm, and Tylenol extra strength when absolutely necessary. Continue to walk, in hopes that it will help loosen things up, without pushing things too far. This should be a “pendulum” effect and I expect that, within a few weeks, I’ll experience a return to more normal levels of arthritic activity, the acute flare diminished. Have a Shiatsu treatment scheduled for this afternoon, which will help.

Things that are great: I finally have llama lashes! Long, long, long eyelashes! So long, in fact, that they hit my glasses. Must purchase eyelash curler. Am finding this hysterical, as I normally have really short, stubby, white blonde eyelashes that require two tons of mascara to even be seen. These are thick, long and slightly darker! Mascara not even required. Am tres impressed! Also good – vertigo is dissipating. Still have to be careful about where I am in time and space (no moving too quickly at too sharp an angle), but is definitely better than previous. Best, best news: Brain fog is gone. Absent. Has left the building. Like a veil has been lifted from in front of my face and everything is sharper and clearer. Is truly wonderful.

Needless to say, life has picked up speed somewhat. Out with my friend Ligia last weekend, basking on College Street patio drinking lattes and enjoying people, music and talk for hours. Ligia brought me a dozen yellow roses for completing treatment – what a sweetie! Tuesday, out with my sister Sally. Wednesday, best friend Barb took me out for dinner at my favorite Toronto restaurant, Peruvian “El Bodegon”, in celebration of birthday/end of treatment. Thursday, Ron, James and I off to Phil’s theatre arts camp drama production – amazing watching Phil, with the young kids singing and dancing, joking with the other counselors – he’s been invited back again next summer as a counselor. Then James and Annikka over to our place for a visit afterwards. Work insanely busy all week, but satisfying and fulfilling, and it is incredible not to feel beaten up at the end of a busy day.

The heat wave has broken finally here in Toronto the hotspot. After weeks of 35 degree weather, we’re down to a more seasonal 25 degrees, which is supposed to last. This is the hottest summer I’ve ever experienced in this city. No complaints – it is the weather I dream of on those cold, grey, snowy winter days. This weekend is Caribana, a huge celebration of Caribbean culture (http://www.caribana.com/). It’s wild, fun and a total party. Hoping to get out to the main parade today, which is spectacular and extends along Toronto’s lakeshore. Must also shop, shop, shop pre-cottage and pack, pack, pack. We’re driving up early Monday morning, thereby missing the mega long weekend traffic that will be present on the only highway that leads to Northern Ontario from Toronto. Soon we’ll be at the cottage, swimming in the cool, clear fresh water, smelling the giant fir trees, walking through the forest, and being close with family, all coming together for our annual reunion at the most beautiful spot in the world.

Sue

July 16 - BLAST OFF!

2005-07-16T09:08:00.000-04:00

It’s Saturday morning, the day after my last interferon injection. Happy treatment end, happy birthday, happy on with life! Am SOOO pleased to be finished with interferon. Had the usual headaches, myalgia, fever and weepiness last night, all somewhat alleviated by acetaminophen every four hours, all less important knowing that this was it. Although I am tired this morning, now it ends. Have my grande bold starbucks coffee, with a very berry scone (and butter). Listening to The Tragically Hip singing “Bobcaygeon”. I may keep up this pleasing little Saturday morning ritual developed during treatment.

It’s been an interesting week, with the vertigo. As always, there are things to be gained from new experiences. Sitting for ten minutes in the morning prior to standing up helps. Peppermint aromatherapy assists with the morning nausea. Have been shuttling into work and home on the hospital shuttle bus – Phil walks me to the shuttle stop in the morning on his way to the day camp where he is a counselor – we used to walk the same path when he was a small child and I took him to school. As I look up at the fifteen year old six foot three inch man beside me, sometimes I still see the little boy as we walk. As a large portion of my work involves fine motor, as opposed to gross motor, skills, the actual working is not too bad and I can find a comfortable position and get lots done. While I’m not able to do my much loved walks to and from work, after dinner Ron and I go for a little community walk instead, giving us special time together to walk and talk, time we so often skip for other things. Yoga has moved from the morning before work on the deck, to evening before sleep on the deck. Some of the postures have been necessarily deleted, or modified. Although I miss the morning sun salutation, lying in corpse pose after stretching, looking up at the stars in the night sky, has been one of the more calming, meditative experiences I’ve ever had.

There are some things that I’ve found extremely helpful for getting through the treatment. These things may not work for everyone:

Skin:
Face wash – Lush “Angels on Bare Skin”. Since my daughter-in-law Annikka gave me some Angels a couple of months ago, I have used it religiously and ALL of the rash has cleared. Thus, I use it on any rash that comes up, on face, or elsewhere.
Body wash – Lush “The Olive Branch”, or “Skinny Dip”. The smell of Skinny Dip makes me happy.
Body Lotion – mostly Lush “Dream Cream”, but also Aveeno “Stress Relief Moisturizing Lotion” and “Skin Relief Moisturizing Lotion”.
Shaving – Aveeno “Therapeutic Shave Gel”
Sun Block – everyday, applied after shower, all over, minimum 30 SPF. Reapplied to sun-exposed areas later. Wearing a hat while out in the sun.

Mouth:
Brushing teeth at least three times daily with a “sensitive” toothpaste (I use “Sensodyne”). Flossing daily. Rinsing mouth with salt and warm water. I have developed thrush twice on treatment and was prescribed “Nystatin” antifungal oral drops, which worked.

Sleep:
Aromatherapy, utilizing lavender and vetiver essential oils sprinkled on my pillowcase, rotating the two oils every few days.

Nausea:
Peppermint aromatherapy. Eating small, frequent meals.

Pain (i.e. headache, myalgia, neuropathy):
Acetaminophen.

Infection:
During treatment, I developed a sinus infection requiring antibiotics for two weeks. As well, I snorted warm water and salt. If you think you may have any type of infection, please go and see your physician – at best, it will be nothing. However, if it needs treatment, one doesn’t want to leave an infection to go wild when one’s white cell count is compromised!

Hair:
I definitely use the Nioxin products, but found when used alone, they gave my hair the consistency of straw. So, I mix them with my regular hair products.
Shampoo – Nioxin “Bionutrient Cleanser” shampoo mixed with Lush “Big” shampoo.
Conditioner – Nioxin “Scalp Therapy” hair conditioner mixed with Lush “Veganese” conditioner.
Leave in treatment – Nioxin “Bionutrient Treatment” mixed with “Implexx 33” hair repair treatment.
Other hair care suggestions – cut it – my hair looks and is way healthier since cutting to chin level. Use a wide toothed comb to comb it out when wet, do not blow dry, or use heated styling products. I wear my husband’s, or son’s, nylon dew rag head wraps at night to stop my hair from rubbing on the pillowcase and coming out. An interesting look…

Brain:
Combo treatment makes me feel like someone has taken my brain and done some new and exciting research experiments with it. Have zero idea what the ultimate purpose of such experimentation is; haven’t had much choice but to endure it. Some things have helped (not necessarily in the order listed):
Yoga
Work, work and more work
Walking
Shiatsu massage
B-complex vitamins
Avoiding high stress emotionally charged situations (whenever possible)
Blogging
Personal mantras, for me: “Let it go”, and “I yam what I yam”.
Most importantly: a strong support system. Have no idea how this would have gone without the incredible support of my family and friends. It is because of them that this has been doable.

Interestingly, I had thought that I would be so excited to get back to “how I used to be”, after treatment. The truth is, I am not the same person any more. This experience has changed me. Not a bad thing. I am looking forward to getting on with “the person I have become”, hopefully wiser (hopefully virus-free!).

Sue

July 9 - ONE

2005-07-09T09:16:00.000-04:00

Injection #23 complete and only ONE to go! Have grande bold starbucks coffee on hand, with lemon cream cheese muffin (containing decadent amounts of whipped cream cheese). All good.

Had planned to put out a list of products I have found useful during treatment (starbucks potentially topping the list), but just am not up for it. Has been an extremely rough week in the grand scheme of treatment. Despite cruising pretty much through it all up until now, have all of a sudden become short of breath and dizzy. Dizzy to the point of having to sit on the bed for 10 minutes in the morning before being able to stand up. Dizzy to the point of falling over while doing yoga (actually, pretty funny). Dizzy to the point of almost fainting at home in the kitchen Thursday morning, and having to be helped out of rounds Thursday morning at work, and having to go home. Nothing like a little drama. Dizzy, with nausea. Many thanks to nurse Sharon and my hepatologist for seeing me so quickly. Blood work is unchanged, all parameters consistent with previous tests. Sharon and the doctor said it may be inner ear-related. Physician also noted that I've had an unusually good go with treatment up until now and that over half his patients on combo are unable to work at all by six months into treatment. His comment was that maybe the treatment is just starting to kick me down.

Well, that the bloods are unchanged means I'm in no acute physiologic danger. I have gotten through this up to now and there is simply no way that the last 2 weeks are going to beat me down! I will sit on the bed for 10 minutes in the morning, if that's what it takes. I will avoid sudden movements and walk very, very carefully. I will rest. I will take the shuttle bus that runs between two of the hospitals I work at, instead of walking. If it becomes necessary, I will miss a day of work. Maybe.

Two weeks of ribavirin and one more shot to go. A walk in the park!

Sue

July 2 - TWO

2005-07-02T09:25:00.000-04:00

Injection #22 complete, two more to go. Count down is speeding up. Grande starbucks bold coffee and lemon raspberry scone. I have given much thought this week to blogging and bloggers, to how this process has been so helpful to me during treatment. With that in mind and so that I don't neglect to do so, with the upcoming end of treatment and busy summer schedule, I want to say thank you to the bloggers. This process has been about more than an articulation of my thoughts during treatment. It has been an online support group, populated with individuals possessing incredible strength and wisdom. I want to thank you all, collectively and individually and please forgive me if I leave anyone out, or say anything to which anyone might take offence. As usual, these are my subjective impressions - but as such, you all mean so much to me.

Although Miles Keaton Andrew doesn't regularly blog with this particular group, his was the first blog I found whilst searching online and Miles is something else! Having gone through multiple treatments multiple times, he's been there and done it. Irreverent, fun, more than slightly strange, Miles makes me laugh. And made me laugh back when I found all of this very unfunny. Thank you Miles.

Ron Metcalfe consistently brings forward honesty, calm and balance to sustain us all. Our own online therapist. Despite the difficulties of treatment, Ron molds the process into a positive force within his life, creating a discussion forum and acting as a spokesperson for those of us affected by hepC. Ron has encouraged me to take ownership of this disease and its treatment. Thank you Ron.

Paul wears the terror of treatment like an alien prosthesis that can't be unattached. It seems painful and inhuman, but he continues to explore it and, over time, it and he evolve together. Thank you Paul, for stating my fears and making me brave.

Young, bright, alive and with a biting sense of humour, Jonathan is a beautiful man with a beautiful soul. His daily journals are required reading. His exercise regime has consistently inspired me to keep up with my yoga and walking, even when I just wanted to let it all go to heck. Thank you Jonathan, for keeping me going.

Martin, the "hepC guru", has a wealth of experience and information that is more than impressive. When first corresponding with Martin, I was certain he worked in health care, so extensive was his knowledge about hepC and treatment. He does not, but has educated himself. I recommend everyone going through this to listen to Martin - the man knows what's going on - and to follow his example of self-education. Thank you Martin for teaching me so much.

Filosofette was a voice in the wilderness, way over on the other side of the world, as frightened as I was at diagnosis and onset of treatment. I am eternally grateful to Filosofette for letting me know that I am not alone.

Artistic and fiercely individual, Wendy has beauty and life force that is enviable. When all I've wanted is to just be like the rest of the world unaffected by hepC and treatment, Wendy reminds me that I am me, and that that is the most important thing. Thank you Wendy.

Peter is, to me, a man on a long, winding journey. Some of the roads he has to follow seem to be awfully tough going, but what beauty he has gained and how freely he shares it. I suspect that Peter's journey spans a lifetime. I feel privileged to interact for part of it. Thank you Peter, for sharing.

Strong, practical and wise, Jane bears burdens unimaginable. I have learned that high emotional situations exact huge cost during treatment. Jane has had no choice and keeps on ticking. Thank you Jane, your strength makes me strong.

Lu is kind, supportive, insightful, tolerant and, despite her own difficulties with treatment induced anemia and fatigue, is there to talk to any time. Lu recognizes the truly important things in life and this flows through her writing. Lu shares qualities of many of my long time friends, a friend who is there, a friend you can trust. Thank you Lu, for being my friend.

Ijaz directs himself towards positive pursuits to offset the trials of treatment. His recounting of family seaside trips has made me pine to someday in life get to a beach in England (not what I ever would have thought I'd be wanting to do!). Most importantly, his ability to smile at those who are unkind, to pray for those who are unfair, remind me of the importance of being decent, despite what I might like to be otherwise. Thank you Ijaz, for demonstrating the decent way to behave.

Nick is an educator, a media star, an author, an impressive individual who has the perhaps most impressive patience I've witnessed, given the incredible difficulty he has had getting treated for this disease. He remains calm and patient throughout. I thank Nick particularly for reminding me to be patient and keep at it, as it can be done.

Balom is eleven (very soon twelve!), infected with hepC, as is his mother. Mom's on treatment and Balom writes his blog. Not only does Balom's situation put mine into some perspective, but he connects me, in a way that I previously hadn't appreciated, to what it is like having a mom on treatment. With two children myself, albeit older, this is important information. Thank you Balom the Light Bringer, for helping me to appreciate what my children might experience during my treatment.

Jeremy is determined, positive and focussed on healing. These are qualities I try to cultivate within myself. Thank you Jeremy for being a role model, for inspiring me to be the best I can be.

Brilliant and poetic, reading the Kerry Grace blog is like reading a beautiful novel, which is unfortunately nonfiction. The caregiver who is, herself, bleeding from her partner's wounds. Thank you Kerry, for putting my trials in perspective, for making me see how fortunate I truly am, for allowing me the opportunity to empathize instead of self-pity. Thank you for showing me what "celebrate life" really means. Kerry and Mike are consistently in my hopes and prayers.

Some of the bloggers seem to have dropped off over time, but I still picture Tink in green gypsy garb floating about the Isle of Man, Steve working hard at two jobs now, Alan taking glorious photographs of Glasgow at night. I hope things are going well for them. There are also new, or recently discovered, bloggers whom I don't yet know well. I look forward to following their blogs: Miss Poppy, Elizabeth Anne, Jayne, Buzz, Debbiejo. I also want to say thank you to some people who regularly comment on this blog - Snowav (Jeff, you totally rock), Eddie in Germany, Javier in Barcelona - hearing from you is wonderful and exciting, underlining how global this all is. I also want to acknowledge Ron Metcalfe's Forum and the SlohepC message board in California, both great online forums for people affected by hepC.

The game plan is to keep blogging, however, post-treatment it will obviously be from a somewhat different angle. Don't know what the future holds, but remain "guardedly optimistic". Thank you all again so very, very much.

Sue

June 21 - THREE

2005-06-25T07:24:00.000-04:00

21 down, three to go. Slept through most of the post-injection period last night. Woke once feeling awful, but managed to go right back to sleep after taking a couple more acetaminophen. The lavendar and vetiver aromatherapy have helped make the sleep thing pretty much a nonissue now. This morning not too bad, with my Starbucks grande bold coffee and maple oatmeal scone. And a banana. And the riba capsules. Continuing to count down.

Saw nurse Sharon yesterday and had a lovely visit. Sharon in a very up mood, referring to the fact that I have about a 90% chance of clearing the virus and raving about how well things have gone on treatment. Met a couple of other patients in the waiting area also on combo. One woman who received hepC from her mother at birth, with one of her own children also infected. Doing a very individualized course of therapy lasting well over a year. In the grand scheme of life, I am so very fortunate. I will see Sharon again on July 22 - the last day I take ribavirin. They'll test viral load quantitatively to 50IU. Guess I'll get the results once back from the cottage mid-August. Then, they'll test again in six months. If negative at 6 months post-treatment, the Ontario government evidently considers you cured and will not fund further testing. As there are no "private" health services here, I would probably head across the lake to Buffalo in the US, for a test at about $250 a pop for future once per year testing.

The week has been very good. Have booked a couple of vacation days - one yesterday and another next Thursday, giving me a couple of long weekends to enjoy in the summer heat. Friday next week is Canada Day, so that'll mean 4 days off in a row! Work hasn't been too busy, which after several crazy busy weeks is a bit of a relief. Had nice lunches with Barb on Tuesday and my friend Sarah on Wednesday, both on the roof-top patio of one of the hospitals I work for. Is absolutely beautiful there, looking out for miles over the city, with the hospital core of the city (5 main hospitals and a chronic care centre literally within steps of eachother), and the University of Toronto surrounding the location. Many of the oncology patients come up there, enjoying the opportunity for fresh air and the view. Phillip has written the last of his examinations for the year and now has another week to go before starting to work for July at a music, drama and arts daycamp. I may be as relieved to have the school year over as he is! Phil's having a great time doing nothing for a week or so, hanging out with his friends, sleeping in late and enjoying the down time.

Toronto a happening place right now. The big news is the 25th annual Pride week, celebrating diverse sexual and gender identity, which culminates in a mega Pride parade tomorrow (www.pridetoronto.com). It is fabulous and about one million people are expected to attend Pride this year. There is also the International Caravan Festival, with representation of the multiple global cultures present in our city. As well, there is the Festival of Fire - an absolutely spectacular blend of fireworks and music that is presented down at our lakefront over several evenings. Am hoping to get to at least one event!

Must admit to leaving much music unlistened to this week, although I have been partial to some Louis Armstrong and Billie Holiday. Having been inspired by the photographic excellence of other bloggers, thought I'd try and take some pictures on my way to and from work. Am finding that the camera does not exactly see things as I do (obviously the camera's fault), but am having a terrific time experimenting with it all! At some point over the next few weeks, I will try to decipher how one actually downloads photos into blogger and try to post some of my meagre attempts - am having a time deciding what's "representative".

The heat and sun are back in a maximum effect kind of way.... already 27 degrees at 8:00 a.m. Loving it - these are the days I dream of in the cold, grey of winter. Not only am I down to three more weeks of interferon and four weeks of ribavirin, but after five weeks, we will go to the cottage in the country, on the lake where we will swim, canoe and sail, where we will take walks through the forests, lie on the dock at night and look at more stars than we can count, with all of our family from Toronto, Montreal and Maryland together. Wonderful times to look forward to!

Sue

June 18 - FOUR

2005-06-18T10:06:00.000-04:00

Injection #20 complete. Four injections remaining. Yay!

Wicked myalgia and headaches with #20. Can’t say I’m going to miss this process. Continue to take acetaminophen and am feeling okay. Have my Starbucks grande bold coffee and bran muffins with milk chocolate chips, which I made this morning. Also, just made Phil a yogurt, milk, banana, peach blended drink. Ron still sleeping. Cats are fed, Goldie’s out hunting, Rain hanging out, Curry chasing flies on the deck.

It’s “Taste of Little Italy” this weekend, in the portion of Toronto where we live (obviously, Little Italy). They close down the main street for about ten city blocks, there’s music on every corner, people dancing in the streets, jugglers, magicians and mimes put on shows, restaurants provide tastes of their menus, and there are crowds from all over milling about, connecting and interconnecting. Great fun! I’m hoping that by tonight maybe (and by tomorrow definitely), I’ll be able to go out and participate. Phil was out on the strip with his friends from school last night and had a wonderful time.

It’s been busy still at work. Suspect its just the new normal. As public and political pressure increases to have shorter wait lists and faster turn around times in health care, we respond in kind, however, without extra staffing to compensate. Am tired and look forward to having a gradual return of my standard “hyper” energy state in a few weeks, when treatment ends. I’ve learned some very valuable lessons, though, about letting myself slow down. There are now things I see, feel, hear more clearly than I ever have before because I’ve had to slow down and have had, therefore, the time to appreciate them more fully. Hope to ultimately find a balance that will allow me to go, go, go the way I love to, but still take the time to truly appreciate what is actually out there. And appreciate what is here inside of me, too. I continue to learn a great deal about that, through this.

Highlights from the week include a quick get-together with Barb on Tuesday. She and her partner continue to face difficult family times and they figure prominently in my thoughts this weekend – my love goes out to them. The heat wave has broken (darn!), and it is 14 degrees on our deck this morning. Still nice enough to do yoga in the mornings though – birds circle high in the sky over me, with sunlight catching the edges of their wings as it rises in the East. Beautiful. Also beautiful, white and purple morning glory growing all over a steel mesh fencing of a parking lot, seen on the walk to work. It’s the contrasts that are so spectacular, sometimes. Nature, despite our urban sprawl, maintains a continued presence.

Movies watched – it’s been a Kurt Russell week on one particular channel, so I’ve seen two of my twisted faves – Big Trouble in Little China (great movie!) and Escape from New York. Managed to catch this week’s Dr. Who episode on CBC. Been listening to: White Stripes (new), Alexis on Fire, the Arcade Fire and more Coldplay, thank you very much to James, who burned me a Coldplay acoustic cd with stuff from Parachutes, Rush of Blood to the Head and X&Y – is amazing. Had possibly the best Zen Shiatsu massage with Allison ever yet experienced, on Thursday. Plan to continue with Shiatsu post-treatment, as it would seem to be just therapeutic for life, generally.

Sue

June 11 - FIVE

2005-06-11T09:13:00.000-04:00

As in, five shots remaining. Next few weeks will definitely be the countdown, now doable on one hand. Injection #19 last night the usual scenario – headache, muscle aches, skin aches (Is that possible? It feels possible), shaky and sweaty. The acetaminophen helps to alleviate all of this considerably. Slept well, feeling better this morning following a little more acetaminophen, but am fatigued. Will have my usual very quiet Saturday. By Sunday, will be on the move again!

I am, of course, indulging in the Saturday morning Starbucks ritual, this week including a venti bold coffee (really wanted coffee this morning!) and a lemon cranberry scone, with butter. It is hot, hot, hot still in Toronto. Each day has been at least 30 degrees and sunny. Love every single minute of it. Last night, post shot, we did put on the air conditioning and it helped a lot, however, usually I just like the heat. The cats are rolling about half comatose on the floor, a little less appreciative of the great summer weather in their fur coats.

We have three cats:

Goldie we’ve had since he was a kitten, now 14, is an orange tabby, our only outdoor cat, who rules the local alleyways and brings us home a variety of half dead and fully dead animals, including birds, mice, rats, bats and other bits and pieces, as offerings.

Rain was about a year in age when discovered several years ago by friends of James, left abandoned in an apartment they moved into, and we took her in…. Rain is an “unusual” cat, short haired white, with large, circular grey patches – when we had her spayed, they shaved her and the hair never grew back (I’ve asked the vet if this is normal – he says “no”), so she has pink back legs and belly. My sister Nancy believes that Rain looks like a small cow. Rain has several stuffed toy snakes that she carries around the house in her mouth while howling. Rain is afraid of sudden movements. Rain is one weird cat.

We obtained Curry (short for Courage), when I went to the animal shelter with my sister Sally, who was thinking of getting a cat. Sally did not come home with a cat, I did. Curry is about 9 months old now, is a white long haired female, with multiple grey and red patches and a completely grey and red fluffy tail. Curry weighed 2 lbs when she came home (at about 4 months of age), and was so sick, she almost died. Now, she rules the house and takes great delight in dragging toilet paper from the roll all over the upstairs. Such a cutie!

Both Rain and Curry stay with me after my shots and purr (Goldie’s out hunting).

The week has been great, although blisteringly busy at work. Will look forward to getting some serious energy back after treatment end. There’s been a return of the dreaded thrush, so am back on the “swish and swallow” for the next little while – ah well, it will pass. Discovered the newer version of Dr. Who on CBC this week and love it, so will be watching when I can from now on. Have been listening to Foo Fighters (new release), Coldplay (new release), K-OS, Stevie Wonder and Cat Stevens (“maybe if I laugh just a little bit…”), during walks to and from work. With the hot weather, I’ve taken to doing my morning yoga out on our deck. It is wonderful. There is something quite significant about actually looking at the rising sun while doing the sun salutation! A way to centre and calm, at the beginning of each day.

Sue

June 4 - Counting Down

2005-06-04T11:32:00.000-04:00

Saturday morning with my Starbucks tall bold coffee and a double chocolate croissant, which I am putting butter on. Probably sounds disgusting to some, but I am allowed to be decadent on the morning after injection. #18 is complete and I am definitely on the countdown. Three quarters of treatment finished. Only six injections remain. This fills me with great happiness, as it just can’t be done with too soon. My respect for those doing a full year of treatment increases with every shot. Really believe that the side effects have not been too bad for me and that I’ve generally had a very reasonable course, however, it drags me down. I am tired of it all and want to get on with life without treatment. Enough whining…. won’t be long now.

The week’s been brilliant. Warm, warm weather. Tank tops and flip flops on the walks into work and home. Benefits of having to wear scrubs while there: no need to dress for success. I zig-zag through the back streets, with a couple of different routes to choose from. All roads take me through urban residential, Kensington market, Chinatown, the area surrounding the University of Toronto and finally, the main hospital core. Notable sightings on the walks this week: an abandoned building, with wild, untended grounds where despite the decay, raspberry bushes are springing up around the edges on which bright orange lady bugs are crawling; the sun rising in the east on my way into work, shining through the stained glass windows of a Russian orthodox church and illuminating my path in rainbows of colour. What a glorious world.

Got together with Barb and Jim this week on Wednesday and had Indian dinner at their place – most delicious. Shiatsu massage with Allison on Thursday was wonderful, as usual. She reiterated pressure points to use when combating insomnia. Also picked up some vetiver aromatherapy oil to alternate with lavender for the same purpose. Has a nice, almost citrus, slightly smoky odour and I like it. Used some last night post injection and slept quite well! Thanks to Ron Metcalfe, for the very helpful information regarding its use. Music this week: Dido, Audioslave (again), Coldplay, Taj Mahal.

Getting geared up for the coming summer – June already, wow. Phil finishes up his first year of high school soon, with exams starting in a couple of weeks. He played his final school team rugby game last week for the year – man, this year really has flown by. He’s working for July as a theatre arts day camp counselor and will be starting right after school ends. Then we’ll head to the cottage. He may go and spend a week with my sister Nan and the family in Montreal before starting up grade 10 in September. Nan and family are having the foundation of their house completely redone and the house is currently on stilts. Poor Nan, is most stressful and I will be calling her daily for the next little while to try and lend some support. A little reciprocity! James and Annikka just dropped by and, with Phil, have headed over to Kensington market to pick up some groceries for us. Ron is now up and having some breakfast, (which is looking far healthier than my double chocolate croissant and butter…). Think I’ll go and have a relaxing few hours on the couch and then see how I feel about the rest of the day. Life’s pretty good!
Sue

May 28 - Feeling Groovy

2005-05-28T08:56:00.000-04:00

Saturday morning, following injection #17. Seven remaining. Last night was the usual post-injection reaction and I’m left tired and with a headache this morning. However, my Starbucks bold coffee, white chocolate blueberry scone and a little acetaminophen seem to be doing the trick. Have had an excellent week, with the sinus infection finally responding to the antibiotics, face steaming and snorting salt water (one of the least pleasant activities I’ve taken part in during recent years, but really seemed to help clear the sinuses). Getting sick on treatment truly sucks. Although, getting sick any time really isn’t great fun. Am better and have only today and tomorrow left on the antibiotics and antifungal mouth wash (which also seems to be working), then will be reducing the checkpoints on the medication chart back to treatment and support only levels.

Went and saw “Star Wars”, with Phil, James and Annikka last weekend. I’m a total sci fi fan, so these are the movies I really do love. Although it wasn’t playing in the Imax theatre, it was in about 8 other theatres at the Paramount, running about every ½ hour, so we had no trouble getting in and getting good seats. Last night, I watched “Team America World Police”, with Ron and Phil – hysterical. Is worth renting for the theme song alone. Have rented “The Life Aquatic With Steve Zissou” for my quiet day today, probably spent mostly on the couch in the living room.

Am back at the main hospital site for several weeks now. The past week has been very good and I’ve spent much of my time with two of the physicians I enjoy working with best. I’ve been able to become involved in some new types of work, always exciting and stimulating. The Toronto weather, although cool and wet at the start of the week, is now sunny and warm. Will definitely be out and about tomorrow. Perhaps even today I’ll be able to get out for a little walk. The trip into work and home each day, about a ½ hour walk each way, has been fresh, sunny and filled with the smells of lilac bushes blooming. The discman is back in play; I’ve been listening to Hall and Oates, John Prine, Audioslave, Tori Amos and Fleetwood Mac mostly, this week. Have really gotten back into my yoga, which suffered a little while I was sick, as certain postures were painful with infected sinuses. Each day, I’ve been practicing at least one hour and the results are palpable. Wednesday evening, I got together briefly with Barb – she and her partner are dealing with illness within their family and my heart goes out to both of them during this difficult time. Thursday, Allison provided a brilliant shiatsu treatment that I departed from with relaxation and renewed spirit. Both of my sisters, Nancy and Sally, have been calling me daily to see what’s up. They are inspirational and provide me with enormous support.

Was in for my 7:30 a.m. pre-work blood tests with nurse Sharon yesterday morning. There are definitely conveniences to having several main city hospitals located within steps of eachother – I can go for bloods at one and be at work at another within minutes. She called with results last night, everything about status quo (white cell count actually up a little, probably due to the recent infection, nice to know my body still has it in it to respond). I forgot to ask about my alt levels. However, as they’ve been within normal range for some time now and as she said things are basically unchanged, I am not too concerned. Side effects are sort of a low grade buzz in the background of life…. hair is still thinning, but I can cope and happily continue using the Nioxin shampoo, conditioner and leave in treatment. Rash comes up and down, but I can use Aveeno and calendula. Wake ups still occur around 3:30 a.m., but lavender aromatherapy is amazing for getting back to sleep.

One thing that really stood out for me while I was perusing the blogs during the week, was a comment on a blog from Martin saying how important it is not to allow treatment to become the focal point of life. I can’t begin to express strongly enough how much I agree with his comment! Neither hepatitis c, nor its treatment, define us. I am not just someone with hepatitis c on chemotherapy. Who I am is a culmination of many innate factors, life experiences, actions, interactions, reactions, hopes, dreams and multiple other things. This disease and the treatment for it are only a small part of me, things that I will be able to learn and grow from, to incorporate into my global persona, but only little parts. The whole is so much more.

Sue

May 21 - Long Weekend

2005-05-21T09:08:00.000-04:00

Saturday morning, with Starbucks coffee and a sticky bun (“Chelsea buns” my Scottish grandfather used to call them). Not that I’ve given up on scones, but the sticky bun is relatively soft and I’ve been having some difficulty eating. Developed a sinus infection last Monday, which originally I thought was dental difficulty and so headed off to the dentist. Wrong. Right maxillary sinus infected, with excruciating pain as a result. Several days on an initial antibiotic didn’t do a whole lot of anything, so am now continuing with another. Throughout the process, I have been living on acetaminophen. Today, there is some reduction in the swelling and the pain – yay! Many thanks to nurse Sharon who got me in to see liver specialist within ½ hour of my telephone call to her. Ended up missing two days of work…. the only time I’ve missed work since starting treatment, darn! However, it’s likely that I would have missed a couple of days with an acute sinus infection even if treatment wasn’t happening (am rationalizing).

So will add another product to the medication chart for a couple of weeks. I keep the chart on my refrigerator door and, each morning and evening, tick off what’s been taken. The default is morning, unless otherwise specified (am, pm). This is the way my little brain fogged life is able to track what I’ve taken and when. Not nearly as creative or conceptually beautiful as Wendy’s marbles being removed from the jar with each interferon injection. Is very practical for me, though. I actually tried to include an example of the chart, but can't for the life of me figure out how to do a table in Blogger. If anyone knows, please advise.

Anyway, eying all of the completed pages on the fridge is quite impressive. As I’ve also now developed an oral thrush infection, what with being immunocompromised and on antibiotics, must pick up prescription from pharmacy today for antifungal mouthwash. Will add to the chart…. Liver physician also wants me to steam my face (can only be good for the skin – am planning to steam with chamomile tea), ice my right cheek, and inhale salt water through my right nostril, in an effort to open up the sinuses – okay.

Not much else new then from the last week. Treatment side effects have not been bad. Amazing how a little psychedelic pain will put them in perspective. Having Dad visit last weekend was fantastic and we had a really great time. Haven’t been listening to much music with the sore head and face, but will be putting on the discman this coming Tuesday for my return walk to our main hospital site for my next 8 week rotation. It is the Victoria Day long weekend here in Canada, also commonly known as the May two-four long weekend, associated with heading up to cottage country with case of 24 beer to get cottages opened up for summer, usually around May 24th. Not much actual emphasis on Queen Victoria, I’m afraid. We’ll be heading up to our cottage a bit later this year. But this long May weekend means bringing out the white shoes and open-toed sandals, now wearable until Labour Day in early September (we’re talking years of conditioning by my grandmothers and mother here – one does not wear white shoes before or after this time period!). I’d been hoping to check out “Hitchhiker’s Guide” this weekend, but with the release of the new “Star Wars” movie, it’s much more likely that Phil and I will walk down to the Paramount Theatre tomorrow and see that, maybe in Imax!

Today is quiet, day after injection #16, with the usual sequelae. Will have nice, restful day, maybe spending some time out on our deck in the sun (wearing 50 spf sunscreen). I am now two thirds of the way through treatment. Yes!

Sue

May 14 - Undetectable!

2005-05-14T08:32:00.000-04:00

Starbucks bold coffee, maple oat scone (with maple icing on top), and Saturday morning. Yes, it’s true, although it was to be another week to wait to call for my 12 week results, best friend Barb convinced me that I should check in “just in case”. Indeed, the pcr is back and my viral load is “less than 600”. Nurse Sharon was very sure to repeat the “less than 600” several times, as compared to “undetectable”. However, as I know that the test limit viral load is 600, then by this test I am undetectable. At the end of treatment at 24 weeks, they will do a more exacting quantitative test, which will measure viral load of 50 or more. So, down from 1.48 million to less than 600 feels pretty darn good. I remain “guardedly optimistic”, aware that viral load can do a breakthrough upswing by treatment end and that relapse can occur within the six months post treatment, or perhaps even later. Despite nurse Sharon’s obvious caution about providing any semblance of hope, I told her she’d made my weekend and this news has. I am one happy camper!

I think we need to be able to feel happy during treatment. I understand the professional responsibility of not providing false hope, particularly with a treatment that offers only a percentage opportunity to achieve clinical efficacy. Know about the desire of a patient to cling to the smallest possibility of hope, no matter how minute or unlikely. Am aware of the crushing defeat and anger and desire to place blame experienced by the patient when the outcome is not the one that was hoped for. Of the fragile position of the health care professional within this process. But I will feel happy today. This treatment, although certainly doable, is no walk in the park. I deserve to feel happy. I will take this information and add it to the positive points that keep me taking those riba pills each day and doing those needles every Friday night. This is a good prognostic indicator.

The past week has been much, much better in terms of side effects than the one previous. Nioxin is the still the hair care product of choice, but Ron assures me that I am the only one noticing that my hair is thinning. He also assures me that the lack of body fat is making me look extremely healthy and fit. He is one wonderful husband… Big points for Ron! The headache was absent this past week (yay!), replaced by increased brain fog. Hmmm, pain versus vacuous affect, hard to choose… think I’ll go with the fog, at least it’s not crippling. Peter remarked in a comment to Paul (yikes, this is sounding pretty biblical), that the side effects of treatment are cyclical, an astute observation. It helps to know this. Lavendar aromatherapy has been beneficial for getting me back to sleep with those early morning wake-ups. My shiatsu treatment Thursday was so good. It is interesting to observe which areas are more sensitive at each treatment and Allison and I were discussing this variability, as well as treating the effects of the chemo, in addition to those of chronic liver disease.

During the week, my sister Nan called me from Montreal each day. Her continued presence gives me great strength. I hope that someday I can give something so significant back to her. Barb took me out to dinner to my favorite Toronto restaurant, El Bodegon, a Peruvian restaurant that has absolutely amazing food. Work has been less busy, but steady and I love the site I am at. Have one more week on this rotation and then return to the main hospital site for 6 weeks. Have been listening to Red Hot Chili Peppers, the Supremes, K-OS and tons of Tom Waits, everything from Nighthawks to Real Gone, one of my very favorite cds. Weather early in the week was gorgeous, up to 25 and sunny but, in keeping with Toronto’s consistently inconsistent weather, it is now 8 degrees and rainy.

Shot #15 is now complete. Single digits left to go! Add it to the list of motivators to keep on going! Biggest highlight of the week is that my father is up visiting from Maryland where they live in a “gated community” out on the Chesapeake. Not sure how I really feel about “gated communities”, but they do have a lovely home and the place is gorgeous, with tons of landscaped countryside to walk the Jack Russell terriers. They are very happy there. We are thrilled and ecstatic to be seeing Dad! He is a riot! He is coming over tonight and making me dinner for post-shot day – wow, Dad. Tomorrow, he’s taking all of us and my sister Sal and her family, out for dinner. I’ve made reservations at a nearby place that has terrific food and a ton of local multicultural ambience. If the weather’s nice (?), we can sit on their large patio in the sun and watch the world slide by. Monday, Dad’s off to Montreal to see Nan. Then he’s dropping by Ottawa to see one of his best friends. He’ll then return to the wilds of the North Eastern U.S. shore and we’ll hook up with him again at our cottage in Muskoka this coming August. Seeing him now is an added treat to life and I can hardly wait!

Sue

May 7 - See Saw

2005-05-07T09:37:00.000-04:00

Saturday morning, with a Starbucks bold coffee and a white chocolate blueberry scone. It’s been a variable week. Some ups, some downs and I’m left feeling a little worn out by it all.

Downs out of the way first. This is the first week I’ve really felt like the treatment was kicking the crap out of me. Monday was good. Tuesday was not, with a sense of unreality and the headache from hell. Took Tylenol. Wednesday was better, with the headache sort of percolating in the background of my brain, but not manifesting itself in any meaningful way. However, Thursday was brutal (I have found in the past that the day before shot day can be tough), the headache excruciating, skin burning, lights blazing, sounds screeching. Took Tylenol every 6 hours from when I got up until going to bed that night. Can’t believe I made it through the day at work. At work, a colleague I was with in the change room when we were getting out of our scrubs at the end of the day gasped at how thin I’ve become and how my ribs are “sticking right out”. Gee, I may not have lost any weight and may be consuming everything edible in sight, but my body weight is being somehow alternately distributed…. there’s just not much meat left on these bones. And the highlight – copious amounts of my already fine, red hair appear to be leaving my head with each shower and shampoo. How very, very nice. Have started using Nioxin shampoo, conditioner and leave-in hair treatment (many thanks to fabulous superstar girlfriend Barb, who included the Nioxin products in a care package for me at the beginning of treatment). As always, I am hopeful, optimistic, “the cup is half full” and so, on to the ups.

The ups are:

If this is as bad is it gets, then I can do it, just watch me! I may be little, but I have great strength. Shot 14 is now complete and there are only 10 left to go.

The week at work was great and I really enjoyed teaching and working with our new employee, who is a terrific addition to our team.

Thursday after work, went for an incredible Shiatsu massage with Allison, which left me feeling quiet, relaxed and in far less pain. Have another booked for next week. Allison showed me some pressure points to utilize to help cope with the headaches and fatigue. Have been tailoring the yoga to concentrate on my breathing and optimize the meditative aspects.

I finally charged up my discman and rediscovered the joy of listening to music while walking to and from work, and while going shopping, going for walks, doing pretty much everything. I’ve been listening to: Green Day, Queens of the Stone Age, Black Eyed Peas, Lauryn Hill, Blue Rodeo, Coldplay, Nora Jones and Dire Straights. Tomorrow, when Phil and I go shopping to pick up some Spring/Summer clothes for him, I am going to buy the Red Hot Chili Peppers best of 2 disc cd – expensive, but I love every song on it.

Also tomorrow, James and Annikka are coming over for Mothers Day and, incorporating Phil’s help, are making me barbecued steak, baked potatoes, asparagus and a mystery dessert for dinner. Yum!

The weather is finally nice, evidently reaching 22 degrees by tomorrow and sunny. Flowers are everywhere and it is impossible to feel down with such life exploding all around us! As I do get some allergies in the Spring, am conveniently blaming them for contributing to the slightly rough portions of the week.

A new week holds promise – I’m scheduled to work at the institution closest to home, which allows an extra ½ hour sleep each morning. There is a neuroscience focus at this location, a specialty area I particularly enjoy and so always look forward to this rotation.

My little sister Nancy in Montreal, the earth mother of us all, has said that she will be speaking with me everyday to check how I am doing – thank you so much Nan, you will never know how much it means. Happy Mothers Day to all nurturing caregivers out there.

Sue

p.s. Thought of an omitted "up" - purchased gorgeous new coral pink leather Italian low wedge round toed spring shoes, with small coral pink leather bows on top, and am all set to click my heels together three times saying "There's no place like home.... "

May 1 - Beltane greetings!

2005-05-01T08:17:00.000-04:00

May already. The time is flying! Am teaching our newest hire. Already with us for several months and now, having been trained at our largest site, is learning the requirements of the satellite institutions. Not really satellites – each institution has its own particular areas of specialization and related requirements for our position. She is a quick learner, a very bright young woman and I’m quite enjoying working with her. She has high standards and brings them to her work, not something seen every day.

Was into the nurse Friday morning and had the ½ way bloods done. Will be seeing her again in 4 weeks for more, but she’s said I can call her in 3 and see if the pcr quantitative viral load is in. There were some aspects of our conversation that I found uncomfortable, largely related to options should I be a non-responder at this stage of treatment. It’s likely that she is just doing her job, reminding me in her own way that not everyone clears. It’s also likely that the non-responder label is a very difficult one for me to want to consider. Struggled with several concepts for a while yesterday. Have decided to stick with optimism instead of wallowing in “what ifs?”. Will wait and see where things lie in a few weeks. In the meantime, all my other blood work is pretty consistent. Hgb around 120 (117-160), ALT 28 (12-48), WBC down at 3.8 (4.0-11.0), as are neutrophils at 1.3 (2.0-7.5), but we’re still a way from treating. Shot #13 on Friday night progressed as usual. Took my comfort Tylenol, but slept poorly Friday night. Suspect it was more due to my concerns about whether I’m clearing, or not, than the actual side effects. Yesterday was very quiet and I slept well last night. Ron gave me an amazing back massage with Lush Dream Cream – what a great man. Did a nice long yoga session before bed. Have a Zen Shiatsu booked for next week, which will help to balance me.

Toronto continues cold and rainy, although the sun is trying to peek through this morning. 8 Celsius yesterday. Weather must warm up soon – it is May! Flowers are starting to bloom and I noticed iris and daffodil as I walked in to work this week! Buds are appearing on the trees. Also this week, Phil performed multiple concerts – Tuesday evening at the Toronto concert hall that his brother, James, attended, Wednesday morning at another high school, Thursday night at his high school, which James and I went to. All terrific! I’ve made the first payment on his trip to Europe next year (ouch! but worth it), and afterwards had about an hour walk home, bundled up against the cold wind, but loving the downtown streets, people, restaurants and shops. This city is so alive. Wednesday night, Barb treated me to Indian buffet once again (she’s so wonderful), always delicious. Poor Ron’s had a rough week, with dental surgery, which is why he wasn’t able to get to Phil’s concerts. Seems to be the only sequelae of his diabetes, which he was diagnosed with as a teenager. Limbs good, eyes good, kidneys okay, but serious vasculopathy of his gums and, of course, easily infected. Having had diabetes and requiring insulin for over 30 years, I know that it could be much worse. Still, it’s awful to see him suffering.

Am meeting a friend for latte today around lunch at an Italian café up the street. Sister Sally and niece Sarah may be dropping by this aft. Sarah just finished her second year of an economics degree at the University of Guelph and is back with Sal while she works for the summer here in Toronto. Sarah also just dyed her hair dark brown, (well, “maple” brown, with dark brown low lights), which I can hardly wait to see! James and Annikka may be coming by for dinner. Am making perogies, onions, bacon and sour cream, with salad. Will be tons for who ever decides they want some! Food still tasting wonderful and weight still hasn’t budged – gotta love it.
Happy May Day to all! Sue

April 23 - Shot #12 complete!

2005-04-23T09:54:00.000-04:00

Saturday morning, following 12th injection last night. Another starbucks morning, with my coffee and cranberry-orange scone. I may associate starbucks and interferon for the rest of my life! Injection was what it normally is…. headaches, muscle aches, sore skin, all eased to some degree by tylenol es, which I took through the night and again this morning. Know that by tomorrow, I’ll be feeling pretty good. Although many people have said that the treatment does not fit into a pattern for them, I find my personal reaction very patterned. Night of shot and next day I have the above flu-like reactions, pretty controllable by the tylenol, and am too tired to do much of anything. By Sunday feeling better and this progresses through the week, peaking on Wednesday (best day for me to make major plans). Thursday, things can be a little rough and I remind myself of this on Thursday mornings, telling myself that if the world is acting like a ridiculous place, it may, in fact, be me. Friday not bad, other than knowing that I must do yet another injection that night! Pretty patterned. Now, I do like patterns and they make me secure, so perhaps I’ve influenced all of this to some degree. Ultimately, I feel fortunate that the treatment is fitting into one for me and that the side effects are not unbearable.

So I’m half way finished! 12 more shots to go. Repeat performance of what’s been done and it’s all done! How am I feeling at the ½ way mark – guardedly optimistic. The problem with benchmarks like this is that although you’ve been through half, there is still half to go. It’s not over yet, and the thought of another 3 months of this is less than fun. I was not expecting to feel euphoric at this stage of the treatment and find myself grateful that things are as they are. The first 3 months have been totally doable and I’ve been really fortunate not to experience anything very horrible. The upcoming viral load check is somewhat daunting…. I have my blood work done next Friday morning. Despite the results, I’ll be continuing to the end of the 24 weeks. The results do matter though, the prognosis for my outcome affected by that required at least 2 log drop.

In the land of treatment side effects, some things have been showing remarkable improvement! Cough has been significantly better this week. Rash is literally gone! Injection site redness continues, coming up about 2 days after injection and lasting until just after the next one. No skin breakdown, or signs of infection, so I just treat the redness as a nice little map of where I shot last and where not to go again. While my hair is not falling out, it appears to have pretty much stopped growing. Again, always the optimist, have decided that because I only have to shave my legs about once every 2 weeks or so now, this is absolutely fabulous for the coming summer! Chemotherapeutic benefit!

Now, summer may not actually ever be coming here in Toronto the grey. Or perhaps it’s already been? We had one completely anomalous day last week, where the temperature went up to a sunny and blistering 27 degrees Celsius. Of course, this was the day I was stuck on my feet in a biohazard containment area wearing about 6 layers of protective equipment for four and a half hours with no water and no air conditioning…. not a great plan on treatment. Will be keeping those sessions to a maximum of 2 hours in the future. Other than that day, it is cold (currently 4 degrees), grey and raining. Good thing this city has so many other things to like!

The week’s been busy and wonderful. The problem with trying to slow down, is that there’s no time to slow down! Our son Phil, who is totally into music, will be going on a trip with his music class next March to Italy and Greece. Am SO excited for him! What an amazing experience – he’ll have just turned 16 when he goes. So we were at meetings about the trip. Had a great Shiatsu massage on Thursday. Got out on Tuesday evening with my friend Barb and had a really nice time. Had lunch with my friend Sarah yesterday, always wonderful to see her. Can’t believe how quickly the time is passing!

Today will be quiet. Picked up some mung lentil beans in the market on my way home yesterday and today will be making the curry recipe very kindly posted by Ijaz Ahmad on his blog – am really looking forward to it! Tomorrow, will probably see my sister Sally, who always comes down Sundays bringing me things I need, or taking me out to shop, yet another wonderful favour from one of the truly fabulous family and friends who make all of this so much easier for me!

Sue

April 16 - Coffee and Scone

2005-04-16T08:17:00.000-04:00

It's Saturday morning and, as is routine, I'm having my Starbucks coffee and blueberry with white chocolate scone. Rewards for injection #11 yesterday. Took my tylenols slightly later than with previous shots, with good result. Although headachy and experiencing some myalgia, not as severe as usual. Kept up with the tylenol every 6 hrs through the night and slept well. Am tired this morning and, as has been the course of things throughout treatment, will have a pretty quiet day today. The tylenol timing and the continuing to take it through the "rough" post-injection night was at the suggestion of Martin Bolton, who's done all of this a couple of times before. Thank you Martin, very helpful! My liver clinic was quite specific about taking tylenol (acetominophen) for this purpose. They specifically told me not to take ibuprofen, stating it is much harder on the liver.

Last week continued busy, but this is great for me. The busier I am, the less I dwell upon the treatment and its side effects. Thankfully, the sides really aren't so bad for me and I haven't had to miss any time in relation to treatment. I feel very fortunate. On Thursday eve, our youngest son Phil was singing with his school choir at Massey Hall, an older Toronto theatre with amazing acoustics - it was a wonderful night! Last night, he went over to James and Annikka's (our eldest and his wife), and they went out to an "all ages goth concert"... can hardly wait for details (which most likely won't be forthcoming)..... ah well, am sure they had fun! Ron and I got out to dinner (Indian buffet), together pre-Phil's concert on Thursday, which was really nice. Between both of us working, the kids, treatment, etc, etc, it's hard to actually get time and sit and talk together. We're going to try and get out at least once each week so that we can touch base. Last night with the kids out gothing, we had broiled rib steaks and baked potatoes, with sour cream and butter. Am loving food!!!!

Picked up my prescription repeat from the pharmacy on my walk home yesterday. Nice to see all those boxes sitting in the fridge, knowing that once they're all gone, my treatment is all finished! Have been thinking a great deal about what to do regarding my American exams and have decided, I think, that I'm going to wait and write them in 2006. It's only one more year and the thought of having to do mega-studying right now seems a little overwhelming. To look at things rationally and realistically, I must conclude that it's probably best to wait until treatment is over. Frustrating though - kind of like to get everything done yesterday! Am developing patience (perhaps another positive gain attributable to treatment?!).

What's up for the weekend? Well, my sister has suggested that we go for brunch tomorrow at major Toronto hotel, involving copious amounts of eggs benedict. Might have to force myself to go! Weather is supposed to warm up a little (we'll see), so am hoping to get out and about in the niceness of it all! Will be slathering self in sunblock pre-outside! Between Aveeno lotion and calendula cream, the rash from last weekend's sun exposure has healed up nicely. In fact, the calendula seems to have really helped with the rash in general!

Next week is my last week at our largest work site, then I'll be transferring over to our busy cancer care site and will be teaching for 2 weeks. Am looking forward to it - will be training up new employee who is young, extremely bright and highly motivated. Can't ask for better student that that! Makes teaching a pleasure.

Sue

April 12 - Mid-Treatment Life Crisis

2005-04-12T20:48:00.000-04:00

Have been thinking a lot over the last couple of days of how at least two of the hep c bloggers have found the mid-treatment point a place of disillusionment and disarray. Approaching injection #12 in 2 wks = my half way point. This may not, in fact, be a statistically significant event, but I will be watching how I'm feeling very carefully indeed. Those of us coming up behind those of you who've gone before are at somewhat of an advantage. We get to benefit from your experience.

Life in Toronto has been sunny sunny sunny! It's lovely! Mind you, it's still cool, at 10 celcius today, but the sun is great! Walked into work today in pants, a sweater, denim jacket and scarf - no more winter coat for me! And shoes, no boots!! The snow is gone. No flowers yet, but it can't be long. One disadvantage, which I discovered while out on Sunday walking around downtown with our son Phillip, is that, yes, this treatment does make you very sun-sensitive. Am very fair (like to think that Nicole Kidman has my colouring.... strawberry red hair and pale, pale, pale... sadly for Nicole, the resemblance pretty much ends there.... ), and always wear 40 sunblock on my face. However, it was SO nice that I had my coat open and had no sunblock on the skin exposed by my v-neck sweater. Got fried and have now developed mega ribarash all over burnt area. Lovely. Bring on the aveeno lotion (and in this case, some calendula as well).

Work still crazy busy, but incredibly interesting. Tink commented on her blog how a recent account she'd seen of the tsunami disaster had made her feel that what she was going through is just a drop in the ocean. I commented that perspective is everything and believe that to be true. The true life experiences that I'm a witness to at the hospital put my disease and it's treatment into a very different place. Many people suffer things I can barely consider and shine with a light through it all that I doubt I could muster.

Walked home through the market, made quick stop at home and then went and had wonderful shiatsu treatment from Allison. Back home where Ron made dinner and I'm about to do my yoga and then get ready for a good sleep. Good night!

April 9 - Life goes on

2005-04-09T07:55:00.000-04:00

Saturday morning after injection #10. Wow, up to double digits! Unfortunately, not a great shot night with lots of flu-like reaction, despite the tylenol, and very little sleep. Now having my Starbucks coffee and lemon cranberry scone comfort breakfast and have added an es tylenol to the morning regime. Planning on a quiet day.

Was reading Steve's biopsy experience, which sounded quite unpleasant. I did not have a liver biopsy prior to treatment. Once diagnosed with genotype 3a, facing a shorter treatment regime with relatively high percentage svr outcome and showing unremarkable liver function on ultrasound, my physician was agreeable to having me take the treatment without biopsy. Should I not achieve an svr, I will certainly have a biopsy performed to be able to adequately assess where things are and to assist with future planning. Also affecting my nonbiopsy decision, I work within the health care institution where virtually all of the downtown liver biopsies are read by physicians I know well. At the time of my diagnosis, I was extremely reluctant to have my hcv status out there for all to see. As time progresses, this is less of a concern to me. This is good because I was placed in a position recently (by my employer), where my hep c and treatment were pretty much put out there with my coworkers, while we were discussing taking on extra responsibilities. Will only be a matter of time now, am sure, before it's common knowledge. Well, part of starting this blog was to help me to take ownership for this disease and its treatment. I am certainly impressed by the personal advocacy demonstrated by the other hep c bloggers. Perhaps I can do this with as much grace and stamina.

I've noticed that most of the other bloggers are being treated with the Roche Pegasys product. I am on Schering Plough's redipen formulation, prescribed as "Pegetron" in Canada. Am adding the Schering Plough hepatitis page to my "websites" sidebar. They only have a U.S. site, and the interferon and ribavirin products are "Peg-Intron" and "Rebetol" respectively there, I think.

There've been a few rough edges this week, not from the medication per se, but just life throwing a few curves in general. There was the work stuff, which despite involving promotion had the double edged sword of outing my hcv infection and treatment. As well, my bank, following extensive reorganization of my finances, managed to take money out of my account on a date that had been rescheduled for a different day each month, setting off a series of nsf cheques and frozen funds that required 2 days and multiple (often unanswered), telephone calls to sort out. In the end, they have redeposited wrongfully withdrawn monies and have covered all nsf charges so that it's all straightened out, but what a pain! I've also been contacted by a health care institution outside of Toronto enquiring as to whether I might be interested in helping them develop a plan for my type of work within their hospital setting. Finally, there is now an opportunity for me to arrange to write American examinations for my profession early this coming Autumn, which would entail my starting to study now. Alternatively, I could wait for a year and write in 2006. This all has made it (crystal) clear that, treatment or not, life goes on unabated. It is not standing still for my treatment and I continue to have associated choices and responsibilities to address. So I will address them.

Sue