Thursday, March 31, 2005

March 31 - Busy!!

Wow. Am so busy at work, there is no time to think about whether or not I'm feeling okay. I think this is a good thing and the week is flying by. Plus, it's interesting work! If only I had more hands, more time.... just never enough to go around!

After work today had a shiatsu massage and am feeling relaxed and centred. See nurse Sharon tomorrow morning at 7:30 to get blood work done and talk about how things are going. Shot #9 tomorrow night. Sharon always calls later, around dinner, on the day I see her and lets me know the results of my bloodwork - last week ALT down to 26. When I was diagnosed with hcv, it was around 180.

After reading Wendy's blog (this woman has fabulous ideas), have calculated the date of my last shot: Friday, July 15th. The day after my 48th birthday. I think that's a pretty remarkable gift!

Tuesday, March 29, 2005

March 29 - Of treatment, redipens, templates and spring

This blog is almost difficult to start, as I'm at a loss as to how to express how I'm feeling about another hcv blogger, with the same genotype as mine, who has decided to shorten his treatment regime. There is some evidence to show that those of us with genotype 3 may have svr with a shorter treatment course. I am too scared to not do the whole currently prescribed 24 weeks. I am also scared, and incredibly saddened, to hear how much pain and difficulty he is experiencing. Am also hugely cautioned. There is not a time where I'm allowed, it seems, to let this go, to forget what I'm going through, to just be me without being me on treatment. Will look ahead and continue to count down. It is helpful for me to look at the chart that I post on my refrigerator, where each day I check off each medication and vitamin and supplement I've taken and each week check off another interferon shot. Am almost through 2 lined pages now - just a couple more pages to go.

Another hcv blogger has recently posted an outline on how she performs her interferon injections, which I think is brilliant. Am taking the Schering Plough redipen for my interferon, which is a slightly different process and so I'll outline how I do the shots for any curious redipen users. Disclaimer: this is how I do the injections, please consult your health care professional and/or Schering Plough regarding specifics of how you should perform a redipen injection.

- you need: redipen kit (allow redipen to warm to room temperature beforehand), alcohol swabs x 2, cotton swab x 1, sharps container, room to perform injection where cats are not likely to knock everything over.

- wipe the selected injection body area with alcohol swab (allows sufficient time to dry before injecting).

- stand the redipen up on its base and grasp the top section, then push the top section down on the bottom section (you'll hear a small crunch, don't worry, it's evidently mixing up the interferon and sterile water).

- gently invert the redipen twice (don't shake it).

- take an alcohol swab and clean the top of the redipen, where the needle will fit on.

- remove the sticky tab from the bottom of the needle portion, place the needle STRAIGHT down onto the top of the redipen and TURN IT CLOCKWISE a couple of times. When the needle is on correctly, you'll see the fluid in the chamber move slightly upwards towards the top of the redipen, accompanied by a small soft noise. This is normal. If any fluid appears around the base of the needle, let it sit for a minute. LEAVE BOTH THE TOPS ON THE NEEDLE FOR NOW.
(on my 4th injection, the needle did not go on correctly and I was taking both the tops off the needle right after putting it on the redipen.... all of the interferon went shooting out of the syringe into the air and I almost fainted. Had to get another cold one out of the fridge and do it. I am now EXTREMELY careful about getting the needle on straight and I leave the needle caps on until just before I inject. Schering Plough has replaced the redipen (in fact, has replaced an entire treatment box), free of charge without any difficulty at all!).

- pull the bottom circular dial portion of the redipen out away from the main portion, dial appropriate dosage to line up with black vertical marking on the redipen.

- take both tops off of the needle, pinch body injection site softly, insert needle at 45-90 degree angle to skin, place thumb on base of redipen and slowly push down to inject contents. I hold the needle in the injection site afterwards and quickly count to 20 (am no good at all at counting slowly!).

- remove from skin, stop pinching skin softly and take cotton swab and press against injection site, place used redipen in sharps container.

- take deep breath, done for another week. If it is helpful, take a couple of extra strength tylenols for any anticipated injection-related side effects (it certainly helps me). Consuming a delicious pastry has been suggested as a little reward for good job done!

I'm very new to blogging and am entranced by the template section of the blog set-up, hence the new page colours. Please bear with me during my blog templating experimental phase. Am sure there will be some very odd results, but this is great fun!

It is really looking like Spring here in Toronto the Grey! Easter dinner was spectacular, with tons of food (am still stuffed!), ham, scalloped potatoes, veggies, homemade white chocolate cheesecake (thanks Annikka!!!). Our youngest son Phillip is back and even though it was great for him to get away for a week and for us to have a week to ourselves, I sure missed him and love having him home! The sun is shining and the temperature is supposed to go up to 15 celcius today - WOW. Is supposed to go back down to 3 degrees by tomorrow, but today looking mighty fine! Had previously booked today as day off to make for an extra long wknd. I have spa package gift certificate left over from Christmas courtesy of James and Annikka, which will be used today for some very special r&r. A good friend previously pointed out to me that as I am going through the treatment, the weather will become warmer, the sun brighter, the days longer and that this will positively influence me during this time. She's right!

Sunday, March 27, 2005

March 27 - Compensation

Am feeling 100% better today and am here with my coffee (oh, and look, there's a little lemon and cranberry scone here too!). Would like to say that I'm terribly knowledgeable about Canadian compensation issues, but am not. I do have the relevant web pages to review though and have added them to the side bar under "Websites" for both Ontario Provincial and Canadian Federal compensation information. [The Ontario site provides a link to the Canadian Liver Foundation - please note that in contrast to what is stated on that site, in Ontario, my personal insurance plan has covered 100% of my combo therapy treatment and, if it had not, I would have been able to apply to the Trillium Foundation for assistance]. It would seem that the Ontario provincial compensation is $25,000 (if my understanding of the comparative value of the Canadian dollar and British pound is correct, the compensation in the U.K. is much higher). Both the federal government and the provinces have recognized compensation for hcv contracted by blood products from 1986 to 1990. Only certain provinces (Ontario, Quebec and Manitoba), have recongnized pre-1986 and post-1990 infection via the blood system, however, the federal government is in the process of re-looking at these time periods. So far, I have contacted the patient relations department of the hospital where I had surgeries in the early 1970's. They have subsequently referred me to contact their department of health records, which is where I will try next. Can't hurt to check it out.

Coffee done, off to do a nice long yoga session (always do a double session on Sundays, what with feeling so good!). Will get place cleaned up and then walk down to the train station to meet our youngest son who is returning from London, Ontario, where he spent the last week (his March break), with my good friend Joan and her family. Another amazing friend.... "send Phil out here for the week Sue, he'll have a great time and you can rest". Thank you so much, Joanie! Then cooking and family, all of whom are bringing contributions for the dinner! Most surprising, it's sunny out!!! Happy Easter!

Saturday, March 26, 2005

March 26 - Mode of transmission

Good morning! Well, morning after shot and other than excruciating headache and burning skin, not doing too badly and now have Starbucks coffee and a scone beside me, bound to make the world a better place. There is a Starbucks next door to us and I allow myself one coffee each day. The injections, although less flu-like than at the very beginning, are still the worst night of the week for me. About 4 hrs post injection, I feel like someone's beaten the hell out of me, with muscle aches, chills, fever and, worst of all, terribly sore skin, like someone has poured scalding water all over me. My husband massaged "sympathy for the skin" cream on my back softly for about an hour last night and I finally fell asleep. Sleep a huge relief because generally, shot night is my only insomniac night and am up feeling like crap for the entire thing. Just took a tylenol for the headache and am hoping it will abate. Have soft flannel top on to cushion the sore skin. It will pass and, as Ron reminded me, these drugs are swirling around inside fighting this virus and making me better. It's there that I will focus.

This blog was going to consider mode of transmission/mechanism of infection. I don't know how I got hcv, not because there hasn't been any possible exposure, but because there's been multiple possible exposure opportunities. Had 2 surgeries in my teens (hernia, wisdom teeth), where I may have had blood products administered (in process of checking, mostly because if I did, I will qualify for some funds), I certainly took part in some "recreational drug experimentation" during the 1970's, also got a little rose tattoo in the 1970's (later laser removed as a tattoo just isn't quite as pretty 30 years later!), and in my employment in health care have had a couple of needle stick injuries, probably before hcv was even a recognized entity. Ultimately, it really doesn't matter how I got this. What ever the route of transmission was, one way or the other doesn't make me any more or less "deserving" of this disease. What matters is that I have it. What matters is that I am getting rid of it.

Will have a quiet day today, recouping. My sister, Sal, who lives in North Toronto, is picking up groceries for me and coming down to visit (like the rest of my family, totally helpful and amazing!). Tomorrow 8 of us for dinner here, with Sal helping me get it together. Will be fun!

Friday, March 25, 2005

March 25 - anticipation

Well it's Friday, anticipation day, shot day. Not sure about anyone else, but Fridays used to be fun, happy days in my world - yay weekend. Do find now that the day is often focused on the injection coming up that night. Despite this being shot #8, despite the easy-to-use redipen, just really dislike doing these injections. Now, it is not abnormal to have an aversion to performing an act that you are aware is going to make you feel bad, so I rationalize that this is a normal aversion reaction. It's also proven to be helpful to read the great U.K. bloggers, many of whom have done their injection about 5 hrs prior to mine (gmt), and recognize that they've just gotten through it so, of course, I can too (thanks guys!). As well, I generally try to give myself a shake and say "Jeez Sue, you work in health care, pull out that work attitude and get the job done". Various coping strategies; ultimately there is no way I'm not going to do it and it just gets done. My husband's diabetic, type I, since he was a teenager, and is quite helpful re: good places to inject (i.e. "don't inject right on the midline, you get worse bruising", and "avoid a 6 cm radius around your naval, there are too many blood vessels"). He has to perform subcutaneous injections twice a day, every day, for the rest of his life and has been for almost 30 years already. My required once a week for six months slightly pales in comparison. However, there is a difference between insulin and interferon.

Shot aside, today is feeling good - better than yesterday. Yesterday started out with a bank appt that was scheduled for 1/2 hour and instead extended to almost 3 hrs. Was completely wiped by the end of it and, for all I know, may have signed to invest my precious rrsps in high risk swamp land ventures off the coast of South America. Actually didn't do anything so foolish (I don't think?), but did not take required water with me to the bank and was quite dehydrated by the end of it all. Also was then significantly late for work, instead of just a little late (afternoon by then), so called in to check how busy it was (not), and ended up taking rest of day off and using coveted vacation day. Even though we were not busy at work, always feel guilty about not going in when I am originally supposed to and this rarely happens in my world. Routine disrupted, feeling off kilter, and continued to not drink nearly enough water for the remainder of the day.... by evening was achy, miserable and shaky. Yikes, that was new and most unpleasant. Recognized lack of hydration and started to rehydrate, but could not achieve really good balance.

One great thing yesterday, J&A, our fabulous eldest son and equally fabulous daughter-in-law, dropped by in the evening, bearing gifts of "lush" skin cream for me: "Sympathy for the skin", which I swear is holding my skin together during treatment. A has been accepted into a graduate program at the University of Toronto (her second masters degree)! Just 2 weeks ago, J was accepted into a science program leading to a career in respiratory therapy! Congratulations to them both!!! They both work as well, so are going to be busy, busy beavers for years to come, but educated, motivated, fulfilled busy beavers! We are so excited for them!

Wednesday, March 23, 2005

March 23 - Thank you everyone!

Thank you so much, everyone, you've all responded so positively about linking to this blogspot and about my taking on "the blog challenge". It's so terrific that you are all out there! I've figured out how to add links (no small feat), and it actually appears to be working! Am thrilled to hear that Ron and Tink are ex-Canadians, both having lived in Toronto previously and Ron having been born here! What ever possessed you guys to leave? Could it possibly have been the incredibly dismal weather?? The unchanging grey sky? The temperature that likes to hover around zero degrees celcius, for most of the year? Despite the weather, I do absolutely love this city and live right downtown. It is vibrant, busy, eclectic, multicultural and a wonderful place to live! That being said, it snowed again today, of course.

Had a very good day. Busy at work, but not too busy. Opportunity to do some interesting and cool new stuff - always good! My best friend, Barb, took me out for Indian buffet dinner after work, which was delicious! I came home to an immaculately clean house - my parents, bless them, have provided me with a cleaning service every 2 weeks during treatment. It is one of the most wonderful things I've ever received in my life. The place looks great, I don't feel like I'm constantly behind in the cleaning up, my husband and son aren't stressed that they should be doing more. It's all good. Have a sneaking suspicion that I am going to be wanting to continue with this after treatment....

Plus, my sister Nan in Montreal has sent me another package. Nan sends packages to several of us - she is the present queen. This package includes: a black scarf engraved with "it's all about me" (thank you Nan, yes, I know it is); a package of kleenex with very funky multicoloured '70's-type flowers all over them; a package of star stickers because, she has written on them, "You are a star"; a package of Fiesta serviettes, orange and adorned with cacti, sombreros and chili peppers (I will be putting them out for Easter dinner on Sunday - perfect for the occasion); and a newspaper article from the Friday, Feb.25/05 Montreal Gazette entitled "Sister didn't hesitate to offer part of liver to save brother's life", about the first live donor liver transplant in Montreal. Nan's written at the top "You need? You ask. You know...".

I might be the luckiest person in the world, to have such incredible family and friends. There isn't much that this disease, or the treatment, can do to me. There is just so much more out there that is so wonderful and special.

Tuesday, March 22, 2005

March 22 - First Post

Well, am finally inspired enough by all of the other bloggers I'm following to actually attempt to do this myself. Please excuse poor blogging etiquette - first time blogging and am sure it will be a bit before I get it right.

I'm a 47 year old female diagnosed with HCV last Autumn. Genotype 3a viral load 1.48 mill. Started Pegetron Interferon Redipen and Rivavirin treatment Feb. 4 - am in 7th week of treatment.

So far, so good. Not a ton of side effects, but certainly some. Injection night and following day always nasty. Rest of week so far tolerable and am working without difficulty. However, did have chronic cough until last week (evidently ribavirin side effect), and now am developing a lovely itchy rash. Positive attitude though! Ultimately the most important thing!

Am of the try not to put too much stuff in my body variety, so am only taking the treatment, vitamins: B complex, D, C, plus calcium and milk thistle. Have hypertension, so am on 12.5 mg hydrachlorothiazide daily. Do yoga (mostly Hatha, sometimes Bikram) 45 minutes per day minimum and walk about 1.5 hrs each day. Have a great support network of husband, two sons and a daughter-in-law, super-support sisters, generous loving parents and truly wonderful friends. Also 3 cats, a lizard (bearded dragon), and fish.

Would love to hear how any/everyone else is doing with HCV on and off treatment and, when I figure out how, will provide links to the other blog sites that have been so inspirational for me thus far in the treatment - there are some remarkably courageous people out there.