Saturday, July 30, 2005

July 30 - Cottaging

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 ( 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.


Saturday, July 16, 2005

July 16 - BLAST OFF!

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:

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.

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.

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

Peppermint aromatherapy. Eating small, frequent meals.

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

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!

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…

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):
Work, work and more work
Shiatsu massage
B-complex vitamins
Avoiding high stress emotionally charged situations (whenever possible)
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!).


Saturday, July 09, 2005

July 9 - ONE

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!


Saturday, July 02, 2005

July 2 - TWO

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.