Saturday, April 23, 2005

April 23 - Shot #12 complete!

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!


Saturday, April 16, 2005

April 16 - Coffee and Scone

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.


Tuesday, April 12, 2005

April 12 - Mid-Treatment Life Crisis

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!

Saturday, April 09, 2005

April 9 - Life goes on

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.


Thursday, April 07, 2005

April 7 - Bits and Bites

Hmmmm, had composed a blog and then lost it. Just a touch frustrating. Let's try once more...

Thursday evening. Our son's up at his high school watching the older grades perform a talent night. Ron and I had baked salmon with cajun herbs for dinner, with roasted potatoes and a broccoli salad, with yellow and green peppers, and garlic. Very yum! I know some people have said that they have no appetite on treatment. Quite the opposite for me. Am loving food, more than ever in life! Used to skip meals, but no longer, now look forward to each and every one! Fortunately, has not meant massive weight increase. Have neither gained nor lost one pound since commencing treatment.

Last night was at best friend Barb's for dinner. She ordered in Indian (more great food!). Also gave me a gift of very cute earrings, with little brown stones and coiled silver. Wore them today and they looked fabulous with my scrubs (well, as fabulous as anything looks with scrubs - hospital not exactly high fashion site).

Tonight, I was met at our door by my friend Ligia bearing gift of frozen 7 cheese vegetarian lasagna, with a pound cake, for tomorrow night's dinner so that I don't feel obligated to cook post injection. Am telling you, these are the most wonderful friends anyone could ask for. Wow.

Watched very cool movie a couple of nights ago called "What the bleep do we know". Certainly not to everyone's taste, but I liked it. Bit of a mix of quantum physics, neuropsychology and mysticism. Of the we internally create our external reality genre. Interesting. Anyone else interested can check out website at We grabbed the dvd from our local video store.

Okay, off to take postdinner ribavirin and milk thistle (coffee and liqueur alternative for hepc champions!). Tomorrow Friday already - can't believe how quickly the time is flying by!


Monday, April 04, 2005

April 4 - Market strolling

Quick post today! Up early to discover day was not filled with downpouring snow and ice, which was terrific news. The entire weekend was below zero, snow-filled, windy and the ground covered with slick ice. Really miserable. Of course now it is Monday, back to work day, and the weather is better. However, made for a nice walk in to work - I'm about 25 minutes from the hospital I'm at. Still cold, but sunny and that's always an improvement.

Work still megabusy. My ribavirin cough has returned with a vengeance. Another woman I work with has cough due to antihypertensive she's taking. Between us, it's unattractive. We know we're not contagious though!

After work, walked through Chinatown to dragon city pet store and picked up some crickets for our lizard. Then up through Kensington market and got lots of veggies: peppers, mushrooms, garlic, onions, snow peas, onions; to have with chicken and basmati rice stir fry for dinner, which I'm just about to start cooking, with a little sesame oil. LOVE the market! It is a wild, eclectic collection of retro second hand stores admixed with open fruit and vegetable stands, organic produce outlets, butcher stores, cheese stores, health food stores, very strange bars that I wouldn't go in for anything, bakeries, plus more I can't remember and is totally multicultural. Is within a couple of blocks of our home and makes shopping a delight!

Must go cook! Sue

Saturday, April 02, 2005

April 2 - Positivity

Saturday morning and shot #9 last night not too bad. Managed to fall asleep by about 9 p.m. and, although I woke up a few times with the fluish stuff, still got back to sleep. Took tylenol ES this morning for the headache and now am, you guessed it, having my starbucks coffee and a maple oat nut scone! Saw nurse Sharon yesterday - blood work good, ALT 28, no anemia, neutrophils 1.5, low, but not so low they need treatment. Is all good. Mentioned the blog to Sharon and how I'm finding it therapeutic. She expressed some concern about the negativity online about hcv and treatment, but I said to her that I think this blog is positive and that I've really found reading the blogs I link to very positive for me. Her comments got me thinking throughout the day, however, and I've come up with:

10 Positive Things Associated with My HCV Diagnosis and Treatment:

1. EMPOWERMENT - Being diagnosed with hcv was overwhelming. I am learning everything I can about the disease. I am treating this thing with the only treatment option out there and am determined to fight this. Knowledge and determination are powerful and this experience is forcing me to empower myself.

2. RETROSPECTION AND RE-EXAMINATION - This experience is causing me to look at the past and to how I've come to this place in my life. I am challenging the lifestyle choices and belief systems I'd routinely adopted and/or accepted. Looking at relationships. Examining the things that frighten me and why.

3. RECOGNITION THAT RELATIONSHIPS ARE DYNAMIC - My relationships are undergoing change, and that is normal and healthy. Neither people, nor relationships, are static, particularly in the face of traumatic events. This experience may foster some of the strongest associations I will ever have.

4. APPRECIATION OF THE WORLD AROUND ME - The world has become a beautiful place - a place of wonder! While I know that this is a normal reaction to a diagnosis of chronic disease and to chosing to undergo a chemotherapeutic regime, I am in awe of how incredible the world is.

5. LETTING GO - I don't need to control everything (many who know me will find this hard to believe!). The world will function okay without my giving it directions. More importantly, I will function and don't need to be insecure, even if I'm not in charge. This is a BIG step for me.

6. HEALTHY LIFESTYLE CHOICES - Whoa - I do yoga and walk everyday, I eat healthy meals (and never skip meals anymore), have healthy snacks, don't smoke, don't drink, consume copious amounts of water. Jeez, I may be healthier on treatment for hcv than I've ever been in my life!

7. SPIRITUALITY - Have always been pretty cynical about spirituality and religion. Am developing a healthy respect for all forms of spirituality, even if I'm not sure where my beliefs exactly fit in. There is much to be said for the power of faith. Find myself reading material on Christianity, Buddhism, Paganism... perhaps I will at least learn about some of the ways that spirituality has been achieved.

8. WE ARE A GLOBAL COMMUNITY - There IS a global community out there and I am part of it. Millions of people have hcv worldwide, many of whom are going through the same treatment process. To be able to share this experience on a global level is amazing!

9. I AM LOVED - I have always known, of course, that I am loved by my family and friends. However, the incredible outpouring of love, concern and support they have provided has affected me so hugely. I never envisioned myself in a position to accept all of this. I am so very grateful.

10. EVOLUTION - This is the most positive effect and a culminant one. I am learning, growing, changing, evolving as a person. This is in direct relation to my diagnosis and treatment of hcv.