May 28 - Feeling Groovy

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

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!

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

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!

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