Monday, June 27, 2005

Moving Day

Al had me laughing last night. Back when the youngest (Ryan) moved out and had half his stuff gone and was coming back the next day for the rest, I was in there measuring and deciding where I wanted my computer etc. I even moved the rest of his stuff out into the hallway and was moving my stuff in. Ryan luckily didn't take it poorly and laughed when he saw how broken up I was over him moving out. :) He was moving in with the oldest son, Dave, so I knew he'd be safe and sound.

Well yesterday Al and I did pretty much the same thing. We were wandering about with a tape measure and paint chips and Josh was going Hey! Hey! I'm not gone yet!! He has stuff spread all over the house in piles of this and that. Really Tuesday can't come soon enough as far as the mess goes.

When Ryan did move out the first time he was only gone for a few months before David met Allison and they decided to get a place of their own. Ryan then moved home with us again. That's when Al built the third bedroom in the garage. Just when he was starting to say he was moving out to share an apartment with a guy from work, Josh decided to move home. They actually overlapped by a month with Josh sleeping in the trailer in the back yard. So here we are after 28 (almost) years of marriage and three sons, 33, 31 and 26 and we've really only lived alone the two of us for at most about 6 months. We are SO ready to have the house just to ourselves and to set our own routine without a care to whoever else is doing whatever.

This last week was fairly quiet at work and this coming week I only work 3 days as Monday is my normal day off and I get Friday as the stat and then I've asked for Saturday and then Sunday and Monday are my regular days off. We went and bought some of the paint from the livingroom. Here is what we have decided on. For the livingroom with the blonde or oak laminate we are going to do a wall in a dark burgandy called Deep Garnet. We plan on using the same trim for both the livingroom and kitchen called Canyon Cloud which is a bit of a creamy looking white. The other walls in the livingroom are going to be a pale pink called Brook Trout. In the kitchen again with the laminate same colour as the livingroom (although we are doing it at a later date) we are going to continue the dark wall but change to a colour called Painted Turtle which is a nice deep green, the rest of the walls in pale green called Pensive Sky and then same trim as livingroom. We have colours picked for the bathroom and computer room and ideas for the bedroom that we will get to when we can afford to continue on.

I think Al will start painting as soon as Josh gets his stuff moved out as it would be nice to have the painting done before we start on the floor. Then when Thursday night rolls around we can get the carpet up and ready for the next day and the floor. I have no idea how long it will take to do but it will sure be a relief to have it done.

I was very tired this week and was glad when the week was over. I have made a good stab at drinking more water. I take bottles of water to work and we have a water machine there. Jude and I have both been trying to drink more water so we have been marking our bottles each time we fill them. The machine keeps the water very cold so I find that in the warm weather I will drink it if it's cold. On Wednesday I managed to drink 4 bottles which are 2 cups each so that means I got 8 cups into me. That is seriously a new record for me! If I can get into the habit of doing that it will be very helpful in January. Lots of little pains and aches, hot flashes have been bad, night sweats are a major drag and many nights I get up and go stand on the back porch to cool down and then I stagger back to bed and back to sleep til the next go round. Yesterday we went to Home Depot and Walmart for a few things and then were going to head to get a few groceries and I just ran out of steam at Walmart and we came home. Al went out later alone and got the few things we needed at Safeway. Heartburn is my other problem this week. I know water gives me heartburn which sounds stupid but Dr. Erb did confirm that water gives you wicked heartburn.

A couple of years ago I stumbled onto a webpage about a little girl with cancer. She had just passed away but they were talking about her Caringbridge website and gave the link. I clicked on the link and found a huge big world of Caringbridge pages and stories. Some days with Hep C or any other chronic disease we sometimes have a tendency to feel sorry for ourselves. Boy you go and read some of these webpages and the stories behind them and you realize how lucky you are that the disease you have is considered chronic and not terminal. Most of the pages that I found are children's pages that have various forms of cancer. Caringbridge provides free webpages for people with life threatening illnesses so they can stay in touch with family and friends throughout treatment.

What happens is that the parents get to know other parents with children in treatment and they mention them on their webpage and give a link to a new child fighting cancer and so you find yourself going to that page as well. Before you know it you have a list a mile long of children you check on and sign the guestbooks for. One of the links that I found on a Caringbridge page was for an organization called 'Share the Love' What they would like you to do is adopt a child on the list. You then take on the responsibility of going to that child's website and signing the guestbook at least once a week to give that child and family some emotional support. I have adopted a little girl and go and sign her book. I really find this helps me as well as her in that it reminds me daily that life could be so much worse and that I'm so lucky to be as healthy as I am.

On one of the Caringbridge sites I go to I saw a link for a site called ChemoAngels. It is a site dedicated to providing angels to send cards and little gifts to people on chemo. I decided to become a card angel for a Canadian person on chemo as for me it works better. It is much easier to not have to go and figure out the postage for the States or the UK etc. A card angel is assigned a person on chemo and for the duration of their treatment I have taken on the responsibiltiy of sending a card and a note a couple of times a week to brighten their day and give them something to look forward to. I filled out my application last week and specified that I would like my patient to be a Canadian. It takes about 6 weeks to get it all in the works as they need to check out that you are who you say you are. They then take the time to make a good match with someone that may have the same interests as me. It gives me time to get a roll of stamps and get a good supply of cards made and/or bought so I'll be ready when I get my assignment. I'm really looking forward to getting started on this.

No music today. Josh is home and packing and I am going to lay out the bookkeeping from work all over the dining room table and make sure we are correct and up to date. Then a bit of housework. It is raining today and watering all the plants for me. The sun is supposed to be back tomorrow. I bought a Grace Smokebush (the picture at the top of the page is of a Smokebush that I found out on the net) at work on Saturday along with some little ornamental cedars to put out front. When we were at Walmart I got 4 pots of flowers to put between the cedars so it looks quite nice out there. We spend no time out the front so have a tendency to ignore that area except to cut the grass.

Monday, June 20, 2005

A new week

I got home from work on Saturday night and I was exhausted. Too tired to do much of anything except sit at my computer for awhile and then collapse into bed to watch some tv and fall asleep early. Right now I work Tuesday to Saturday with Sunday/Monday off. Saturdays at work I like to do some housecleaning but man oh man I am having to struggle these days. If it is at all warm outside and I have to do anything strenuous (like sweep the floor!) I get a hot flash and am soaked in sweat. It is really horrible.

I went into menopause early at 42 and I'll be 55 in November. My doctor calls me post menopausal so I was really put out for the longest time that I was still getting hot flashes and night sweats. It just didn't seem right! Now from reading Ron's Hep C forum I am realizing that hot flashes and night sweats are part of Hep C. My main feeling about that is "Damn it all to hell!!" I really hoped it was a menopause symptom that would go away eventually. So many of the symptoms are ambiguous and can be caused by either this or that. Fatigue and major hot flashes are the two things that bother me the most right now.

With Josh moving out in a few weeks there are a few things we are planning on doing. For one we are going to rip out all the carpeting in the livingroom and put down laminate. We have been looking into this for awhile now. The house has a cement foundation but with a dirt floor under the house. No basement just a crawl space. We have two dogs and the people on either side of us have two dogs each. When ever there is neighbourhood excitement of some sort the dogs all run back and forth between the fencelines and bark etc. Well in the summer a huge dust cloud moves across the yards and seeps into the houses and everything is always coated in a fine layer of dust. We are all taking steps to put shrubbery between the yards to try and cut down on the dust which should help somewhat.

Once we get all the carpeting gone and the floor down that should help considerably with the housecleaning and keeping things cleaner. That and getting everything sorted out and into tubs for easy access and storage. Sunday morning we made a tour around to the the various home improvement stores and checked out the cost of laminate and paint. We are going to have to paint the livingroom as well when Josh goes because behind his huge entertainment centre is a tiny section that we couldn't paint last time because we couldn't reach it back there. So............we are thinking of being bold and not quite so conservative..............yeah maybe. Then of course we will have to do a complete sweep through all the rooms and rearrange things. We have had two households crammed in here for the last two years.

We have a plan in place for getting ready for treatment which includes the house but also includes getting into better eating habits and drinking more water and getting more exercise and we are both going to do this together. Yesterday for Father's Day after all the boys had called or been by in the morning and after our trip out to the various home depot like places we decided to take off for the rest of the day. We made a pact back awhile ago that Sunday's are for us. We spend the day doing something together, whether it just be staying at home and watching a movie or working in the backyard or going someplace. It is our one day at home together right now.

We drove into Vancouver and over the Lion's Gate Bridge and over to West Vancouver. We drove along the bottom road and looked at all the beautiful beach front properties and dreamt about winning the lottery lol. We came across Lighthouse Park and stopped there and went for a walk. Notices along the way tell you it's a 10 minute walk down but at least a 25 minute walk back up. We decided to brave it anyway and walked down. Once down there you can't get to the Lighthouse as it is in a protected area but you can get down to the beach or really the rocks. Not much beach but wow it is sure nice to get down and sit on the big rocks and watch the boats and birds and feel the breeze off the water. The smell of seaweed is wonderful!!

After a good rest at the bottom and full water bottles we started the hike back up. There was a baby and a lady with a cane on the way up and I mentally used them to spur me up the damn hill. If the baby and the lady with the cane could make it, I sure as hell could. They have benches all the way up with instructions to take it easy and rest when needed. We only had to rest a few times and I kept that baby and cane lady in view and pushed on as they got close. It was a good walk.

We got to the top and decided to keep heading towards Horseshoe Bay and the Sea to Sky Highway out towards Porteau Cove. It is right on the ocean and is used during the day alot by divers but also has a picnic area and a camping area. We drove through the camping area and got information and pamphlets. I think it would be a great place to camp in the fall when the kids are back in school and it's quiet. Also a great place in a camper during some of the first fall and winter storms. We are going to try it out this fall I hope.

Then we headed to White Rock for fish and chips for dinner. They were so good. The tide was in so no walk out on the sand but we did take a short stroll along the sidewalk that runs along the beach. The breeze was blowing and the gulls were screaming. By then it was getting on to 8pm and time to head for home about half an hour away. We got home and Al has to work today so we went to bed and read and watched tv for awhile and then right off to sleep.

Today I am planning on resting lots. Doing a bit of housework and then heading for the porch swing with my book. The temperature is supposed to hit 29 by this afternoon. Josh is heading out to spend the night in Surrey with his girlfriend so it will be just us tonight :)

Tomorrow starts a new week for me and this week our girls night has been moved to Wednesday and we are going to have it at work. Jude is going to bring her 4 wheeler to work that day and Lynnie and I will take the gator and we'll head over to the back field looking for some wild roses that I want for the back yard. Maybe we can find some other treasures back in there as well. Maybe back to the yard for pizza..........we'll see.

Edit: I've noticed that music is important to many of us. Today I am blasting Sheryl Crowe, Dido, Rob Thomas, Norah Jones and Sarah McLaughlin throughout the house loud enough to rattle the windows and make the dogs run for the back yard!

Wednesday, June 15, 2005

Flora and Fauna

Here is a link to the eggs and other wildlife and flowers at work.

Edit: Martin let me know that nobody could view so I have changed the link and it should be viewable by everyone now. :)

Get up and go!

Well I headed off to work yesterday and felt much better once I got there. Working on a tree farm allows me to be outside and inside throughout the day. On a nice sunny day it's great. At lunch yesterday Jude and I took our camera's and went for a walk around the farm and took pictures, got some exercise and enjoyed the fresh air and sunshine :) What could possibly be better?

We have a variety of wildlife that comes and goes throughout the season. We have a pair of bald eagles that arrive in the early spring and then later in the spring you see the babies flying around and hunting in the fields. We have a little bunny that's living in the rockery out front of the office and we are not telling Stewart about it cause he is nibbling on the plants. The barn is full of babies right now. Swallow, wrens, starlings and robins all have nests in there at the moment and when the mama's fly in the screaming from all the nests gets loud lol. I put up my hummingbird feeder at work instead of home (no point setting the smorgasbord for Sirus) and we have a pair that are coming back and forth from the big eagle tree at the fenceline so we think their nest is up there someplace.

We also have a beaver that we have noticed has cut down a few small wild trees at the far end of the pond so we are going to have to keep an eye on that as we can't have him cutting down our trees. We'll have to get a livetrap from fisheries or some wildlife society and move them away from the farm. Walking the rows yesterday we startled a little killdeer off his nest and he dragged his wing and tried to draw us farther down the rows. We were on to his game though and just quietly left that row watching carefully where we were stepping as those little eggs look like stones. I have some pictures from last year and tonight I'll try to get an album of some of the wildlife going on webshots and provide a link.

I do the webpaging for our site at work and am learning everyday. I am including a photo album on that page as well so here is a link for Pacific Coast Trees.

Tuesday, June 14, 2005


For some reason mornings are the worst for me. I wake up feeling crappy every day and it's a struggle to get moving. Luckily once I do get moving I seem to do fine but that first hour or two are horrible.

I don't sleep well these days and have really bad night sweats that wake me up all night long. By 5 am I am up and know I am not going to get any more sleep this night. I don't have to be at work til 8am so thankfully I have that few hours to get my stomach under control and force myself to get mobile. Today I almost lost the fight and phoned in sick to work but have convinced myself that if I go and still feel crappy I can come home and work here. It's nice to have that option at least.

Thursday, June 09, 2005

The results

Dr. Erb said the last biopsy was a 1 out of 4 for fibrosis and a 2 out of 4 for inflamation. This time it's 2 and 2 so there is a bit of progression but no panic as far as treatment goes.

His advice is we should start thinking about treatment again and what he would like me to do is a 3 year course of interferon with ribavirin for the first 3 months. He said that when I was on treatment my rna went to undetectable and my liver counts all went to normal so he feels if we do the ribiviran and the interferon for the 1st 3 months it will bring all the counts into line and then we can keep them there with the interferon. The anemia last time just kept on a downward spiral until the drug was discontinued and then I had to wait for the counts to come back up before I could take the ribavirin again. Twice that happened during the 48 weeks.

So then the next thing is money. He says it costs $2400 a month but we do have pharmacare and my husband has extended health benefits at work. Dr. Erb says that pharmacare will only pay for 1 - 48 week course of treatment and because I was on a drug trial last time and have never been funded under pharmacare then I should do it that way this time. But with pharmacare you have to pay whatever your portion is once a year. So if I was to start treatment now then I would have to pay my portion before pharmacare kicked in and then again in January when a new year rolls around I'd have to pay my portion for that year. So the plan right now is to go back in January and start the treatment then so that the first year of treatment falls in a full year of coverage. Then we will go to my husbands extended health. They pay 80% of the cost of drugs so that would still leave us paying $400 a month ourselves but Dr. Erb seems to think that the drug companies will kick in and help pay so that works for me.

I asked him if during this treatment if a drug trial became available would I be able to switch over and he said yes and no. Some drug trials will not let you participate if you have already had treatment but some do so if one came along that I qualified for then I could switch over to it after a 3 or so month period of quitting the drug and starting fresh on the trial. The final thing he said was, "You don't want to find yourself sitting there 10 to 20 years from now with end stage liver disease because you didn't have treatment now".

It is a relief to know exactly where I stand and to know I have 6 months to go before I start treatment. Starting in January is perfect for me work wise too because winter is a slow time for us so if I need to take time off work in the beginning it will be easy to get the time then. Also if I get sick from the ribavirin and need to take some time off work I always have medical EI to fall back on as well so just knowing that helps relieve the stress even if I sail right through treatment this time with no problems. Hey gotta keep positive! Plus I want to finish organizing the house.

Josh moves out the end of the month. Middle son who moved home 2 years ago so he could save up for his third trip to Thailand. He loved it there the first two times he went and wanted to go back one last time before he settled down and bought a place of his own. So he moved in and saved up and took time off work and went to Thailand for 5 months. When he got home he decided to stay home and save money for a downpayment and pay off all his bills. He has now done that as well and is moving into his own condo a few blocks away from us on the 29th of June (but who's counting the days lol) Then we want to finish clearing away 28 years worth of clutter and "I might need it someday" sort of stuff. We have already done quite a bit and I have been buying rubbermaid containers and bins and organizing what is left.

Oh yeah, that is something else, the biopsy and ultra sound report both showed I have a bit of a fatty liver. I have no idea what that is about and when I am done here I am heading to google to read up. I have been tired alot lately and find I am resting between chores and such lately as well. Been having pains under my ribs on that lower right side as well and all these symptoms are not going to get better until I start treatment. That is what I have to keep reminding myself. All the news today does not alter the liver disease symptoms I am having now and the only way to help is eat healthy, don't drink (which I haven't done for many years) and get rest when I know I need it. So that is the plan. To me it sounds good.

Sunday, June 05, 2005

Weekend with the baby

I got my son and daughter in law to drop the baby girl off to me at work yesterday just before closing so she got to see the big machines and play in the sand and muck with the water lilies in the tanks. She just turned 2 at the end of February and she is talking very clearly. She enjoyed her visit and said hi to the guys but as soon as she got close to the big machines she quickly decided she really didn't want to sit on them after all. We have her until tomorrow and then Dave is coming out to pick her up. She wants to go to the park but it's been raining most of the day. Dave is coming around noon as he has to head to work at 2. That gives me the rest of the day to rest up for next week. By Saturday after putting in a full week I'm tired. I pretty much need my weekends to rest up for the coming week.

I'm gearing up for my visit to Dr. Erb on Thursday and what the biopsy showed. I go back and forth between thinking there is not much in the way of progression and I can forget about treatment right now and just get more rest.....and then I am convinced that there is progression and I need to go on treatment and deal with that. So I've been thinking about the last time round and all the things I did wrong that exaserbated the situation.

I know for sure I didn't drink anywhere near the amount of water that I should have and I think that was a lot of the problems I had. I got dehydrated and feeling sick and when that happens I shut down more and more. The worse I feel the more I don't want to put anything at all in my mouth including water. I have a very hard time taking pills and was trying to eat a bit to at least take the pills with food and I'd choke down a bit of water with it. Part of the whole liquid problem for me was that fact that for the last 30 years I have pretty much drank only coffee and diet pepsi or coke. I rarely drank water or any kind of juice. When I started the drug trial I was told I could not have anything with caffeine so that included both of my liquids. So even though I was getting thirsty I wasn't looking for a drink because I knew I couldn't have coffee or pop. I would eventually take sips of water but that was about it.

My main concern is the ribavirin (in case I haven't made that clear already lol) and the hemolytic anemia that I got. If I can't take the ribavirin for the whole course of the treatment it drastically reduces the chances that I'll stay clear of disease when treatment stops. By reducing the amount to what I can tolerate will maybe not be enough to do any good. Maybe the water I didn't drink had an effect on how the ribaviran affected my blood and body. Maybe all the drugs built up to too high a level. I noticed last time that they did blood work to see what my counts were but they didn't monitor the level of drugs in my body. If I didn't drink enough liquid to wash the drugs out before adding more maybe the levels just got too high. I have wondered ever since the drug trial ended why my alt jumped from normal to over 300 within a couple of weeks of stopping treatment.

Oh I hear a little girl yelling grandma and had better run. I really appreciate hearing from some of the other Hep C bloggers and I really find it helpful to have others going through the same thing to relate to and blogs to read about how they are handling things.