Blood tests and sequencing

I got a call a month ago from the drug trial nurse asking me to come back in so they could do another blood test for sequencing. I went this morning and gave my blood and was out of there in 20 minutes. The nurse didn't think I have to go back but she'll call if they need to see me again. I asked her about relapsing after being clear of the virus for over a year (someone on the board has just relapsed after being clear for 18 months I think) and she said the literature says that there is a 5% chance of relapse for up to 3 years after attaining SVR. That pretty much sucks!

Well now, Kim has "tagged" me. I tell you all 8 things about me and then I "tag" 8 more bloggers, they do the same thing. So here goes!

1.) My FORTY!!!! year high school reunion is next year. I just keep thinking OMG!! 40 years!!

2.) I am planning an Alaskan cruise for next September with my mom, my 2 friends and one of their moms. It should be so much fun.

3.) I think I am quickly becoming a vegetarian. I've found that the only meat I've been eating much of lately is chicken and today on my way into the hospital I ended up traveling down the freeway beside a truck full of chickens going to be slaughtered and they just looked so poorly treated and jammed into little cages................it sure turns me off eating them.

4) My favorite soaps are General Hospital and One Life to Live. I tape them both and watch them in the evening or on the weekends.

5.) I love the rain. That's probably a good thing seeing as how I live in a rain forest!

6.) I have 2 brothers and a sister and I am the oldest. 4 nieces and 1 nephew.

7.) My favorite tree is the Japanese Maple and even though I live on the 3rd floor of an apartment I have 6 different Japanese Maples.

8.) My friends think I'm morbid and strange because I follow so many of the Caringbridge pages. It was one of those things where I accidentally stumbled across a little girls page and started following it and one page and one child led to another and another and here I am 3 years later still following the many many children. September is Childhood Cancer month. Just go and search youtube and watch some of the video's. So many of the kids that I started following have died and more and more are diagnosed each day. We really need to channel as much as we can into the cancer fight.

Well Kim that's my 8 and I really don't have 8 people to tag. I am one of those lurker types that read the various blogs but don't make comments so I really don't know that many.

July in Beautiful BC

I've heard nothing from the hospital so I guess I can safely assume the virus is back. No surprise there!

Lynne and I went to Mintner Gardens yesterday. It's out the freeway past Chilliwack almost to Bridal Falls. They have weddings out there as well as being a garden. As it so happened yesterday there was a wedding while we were there and it was such a gorgeous setting! I got one picutre of the bride going by with her dad.

I have been working on my drawing and am really enjoying it. I wanted to get some good macro's yesterday of various flowers so I can use them to draw and did get some gorgeous closeups.

bloodwork

Well I went today to give blood again so they can chart how quickly the virus comes back. The last test came back <30.

I have to go back if the virus hasn't come back yet from this bloodwork but not until August 10th. I wonder how long it WILL take to come back.

Weather is hot and gorgeous here the last couple of days and I'm feeling so much better. Work is good so all is good in my world at the moment.

Clearing the virus

I just got a call from the drug study nurse to let me know that the bloodwork they took 2 weeks after I stopped treatment showed that I had cleared the virus. This is what happened last time I was on treatment too. I had cleared by week 4 and stayed that way till the end of treatment and then the virus came right back.

They need me to come in for more bloodwork to see how quickly the virus comes back. I guess they'll do that every few weeks until the virus shows it head again for data collection sake.

Ahh well it's nice to know that i still respond quickly. The nurse said that it is good news and bodes well for any future treatment. She also said they have found that is you have to discontinue treatment at all the virus does come back. Last time I had to stop the ribavirin twice to allow my counts to go back up. Now they can control the anemia much better so by the time I go at this again they may have it all under control.

2 week check up post treatment

I went back to the hospital yesterday for the 2 week checkup after treatment stops. More bloodwork, another ECG and a physical exam from a doctor. I managed to glean from what he said to the nurse that I have an enlarged liver with steatohepatitis (non alcoholic)

(Nonalcoholic steatohepatitis or NASH is a common, often “silent” liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. The major feature in NASH is fat in the liver, along with inflammation and damage. Most people with NASH feel well and are not aware that they have a liver problem. Nevertheless, NASH can be severe and can lead to cirrhosis, in which the liver is permanently damaged and scarred and no longer able to work properly.
NASH affects 2 to 5 percent of Americans. An additional 10 to 20 percent of Americans have fat in their liver, but no inflammation or liver damage, a condition called “fatty liver.” Although having fat in the liver is not normal, by itself it probably causes little harm or permanent damage. If fat is suspected based on blood test results or scans of the liver, this problem is called nonalcoholic fatty liver disease (NAFLD). If a liver biopsy is performed in this case, it will show that some people have NASH while others have simple fatty liver.)

And palmar erythema (Palmar erythema is reddening of the palms at the thenar and hypothenar eminences. It is associated with various physiological as well as pathological changes, the principal one of which is portal hypertension. It is also seen in patients with liver dysfunction. - Wikipedia) non of which I was aware of.

The nausea still comes and goes and with it my appetite. I'm still very fatigued and it is frustrating! I just want to feel like I did before all this drug trial started. I go back in six months for more follow up. As the nurse walked me out she said it was probably just as well that I quit when I did as it was most likely they would have pulled me from the study anyway because of the blurred vision. She said it is something they watch very closely. So I guess either way I would have been done.

I am going to take one more week off work and then head back. I sure hope the energy level increases! After visiting the hospital on Friday I went to Richmond and visited with my Mom as I really don't get into town all that often. I took her out to Steveston and we had a bit of a walk along the water and stopped for fish and chips. It was really nice.

Today I am off with my two sons to go and visit my oldest son and granddaughter for dinner. I don't think I've mentioned it but their marriage has come to an end and they are sharing custody of the baby. It is sad and I love them both and am not taking sides at all. I really don't think there are sides to take, it just slowly came to an end for both of them. My only hope is that they will all be happier this way and that the baby will have all the love and care she requires from both parents as I know she will. They both love her dearly and will work with each other to make sure she is secure and happy.

Our weather here has been on the cool and wet side but I really don't mind. The heat kills me right now and saps what little energy I have as well as making the nausea flair. One day at a time and hopefully life will get back to normal quickly.

Last weekend Josh and Lacey and I went to visit friends in the Shuswap and had a very nice relaxing weekend. It felt good to get away for a bit and just relax.

One last note. A week ago I saw my liver specialist and after examining me for the end of treatment he asked what I thought happened. I said "it was all about the nausea and vomiting and not being able to work, houseclean, feed the animals, clean the litter box, grocery shopping and everything else it takes to run a life on a day to day basis when you are alone. I didn't have the luxury of just lying down and being sick" and he just nodded. He said "what now?" I said, "Well, I plan on regrouping" He looked at the nurse and she said "we just don't have anything else right now" He then mentioned a drug that I missed and looked at the nurse. She said "You like that one don't you?" and smiled and he nodded yes he did. Then he looked at me. I said "Hey I'm always up for a drug trial at least to try it and see" He nodded and said "OK" and that was the end of the conversation.

I'm done.

Every morning when I wake up sick and nauseous and I tell myself, "I can't do this any more!!" The little "Rah Rah" team in my head starts in with "Yes you can, you can do this!" and talks me back around and I eventually get through the day.

This week after I took my shot on Tuesday night and got through Wednesday and Thursday I was doing not too badly. Very tired and dragged out but not too bad. I went to bed and woke up on Friday morning throwing up. It took me hours to get down the little magic pill and that didn't even do it. I struggled all day with my stomach and trying to get at least a bit of liquid down and keep it down and of course got no pills down at all. Saturday morning I woke up to the same damn thing. Throwing up uncontrollably. Heaving and heaving and legs so shaky I couldn't stand. That's when the little Rah Rah team quit and agreed with me. I can't do this. I can't handle day after day after day of heavy nausea and throwing up on Fridays. I just can't do this alone.

I feel like I am letting a whole lot of people down starting with the hospital and my doctor but I know I have done the best I can with trying to do this drug trial and go to work and maintain the apartment, bill paying, and taking care of the animals and all the other day to day minutia that is required to maintain a life. I hope everyone else manages to get through this and I wish everyone the best of luck. I need time now to get better and regain my strength. I still feel week, sick and dizzy and haven't had any drugs since Thursday night. So there you have it! I'm done.

Shot #4

Week 3 is done and tonight I take shot #4. I did manage to get all my pills down this week except for Friday's when I was sick all day and didn't get any pills down at all. But Saturday I rallied and managed to get back on track. This week I have to do all the pills. I know as well as the nurse telling me how important it is to stay on track but again I still have my bouts of nausea when I wake up in the morning. I would have to take the anti-nausea pill every 4 hours all night long in order to not be sick in the morning. So I start my day with a couple of quick tokes to settle the stomach, then I move on to getting down the anti-nausea, wait 45 minutes and take my pills with some kind of breakfast.



Then my problem becomes that the anti-nausea pills make me want to sleep. So what I have done is applied for both Medical EI and CPP Disability and we'll see what happens from here. But at the moment I don't have to be to work each morning and that has lifted a considerable amount of stress with HAVING to have the pills down by 6am in the morning.



I got some of my bloodwork and my hemaglobin is down to 12.2 and my nutraphils are at 1.82 so both are falling but for right now they are fine. The good news is my alt and ast have fallen within the normal range so that made me happy. I go back next week again and until then I just have to concentrate on getting the pills down and staying ahead of the nausea as much as I can. If it means frequent short naps then so be it. I'm going to try and get in some exercise each day as well and poor little Lacey will thank me for that! She hasn't had nearly as many walks but she's a good little girl and she is totally litter box trained along with the cat so I am very lucky there.



I'm starting to get a rash both on the back of my hands and a couple of itchy spots on my back and arm and leg but not too bad so far. Pop is not tasting good to me right now so have been drinking alot of juice and water. Denise has a good point about the ginger so one of my sons brought my 4 different ginger teas to try and I'm going to get in a good supply of ginger ale and see if that helps as well. So I'm a bit itch, a lot sleepy and a bit nausea but happy with this week and feel like next week might be better.



Many mornings though I have to admit, I wake up feeling so nauseous and saying to myself I can't do this, what the hell was I thinking and on and on but I do know as soon as the nausea passes so does that mood and I feel much more upbeat and ready to march on with things when it's under control. Food is still a bit of an issue as far as crappy appetite and with needing food to get the pills down I have switched over to several small meals or snacks instead of three meals a day. That just wasn't working for me.



So overall? This was a better week than last week. :)



I went down to Lynnie's on the weekend and sat by the pond with my camera and took a few pictures. I'll post a few here before I go. It's a little piece of heaven on earth.



Anne

Shot #3

Week 2 down and I have to admit I am struggling. I can’t seem to get the nausea under control. I had my appointment at the hospital yesterday for blood work, to check in with the nurse and get more pills.

She understood about the nausea but was unhappy with the pills I’ve missed. Here is what happens. The telaprevir is large and has to be taken 2 pills, 3 times a day, 8 hours apart. So I get up at 5:00am and spend an hour trying to settle my stomach and get together some kind of food to take the 2 pills with along with the 3 ribavirin. I do this with a combination of a few tokes, some deep breathing, and trying to keep my stomach calm.

Then I have to be to work by 8:00am. I spend the morning fighting with my stomach and trying to keep it settled. At 2pm those second pair of telaprevir has to be taken along with food and water or drink of some kind. This is where I run into trouble. I can’t very well go out back and smoke a joint so I don’t have this as an option for stomach control. So I try various options of food and sometimes I can take the pills and sometimes I just can’t get them down for a few hours. It’s hard to sit at work and choke and gag.

I guess I should mention the nausea’s impact on me. I know someone reading this probably thinks Oh for God sake!! Just take the damn pills and be done with it and trust me, if I could I would!! It is like my teeth are permanently clenched trying to hold my stomach contents where they belong. It gets so bad that it’s hard to brush my teeth even because just getting the toothbrush in there is enough to make me gag. Once I start to gag, its game over for awhile and I have to start the whole process of trying to calm my stomach all over again.

If the 2 pm pills don’t get taken when they should it pushes everything back by an hour or two. This is all assuming I get down the 6 am pills at 6 am. Some days I can’t and then work is looming so I gather everything up with me and take it to work and try to get it all down there but by then it is at least 8:30 or so and then we have pushed the afternoon pills to know 4:30 pm. So……..depending on when I get the various pills down (the ribavirin has to be 12 hours after the first group so if they are taken at 6am they are also due at 6pm so again I’m staggering pills and trying to take them with upset stomach) I then have the last set of telaprevir to go 8 hours after the afternoon group. Now if it is 6 am I get the pills down and manage to stay on schedule then I take the last group at 10 pm which is about my limit. Otherwise it is 11 or 12 and I have fallen asleep waiting to take the pills. If that happens then I can’t just wake up and take pills, I have to go through the whole stomach calming routine with a few tokes etc thrown in so consequently I end up missing the last 2 pills. That freaks me out and panic sets in and makes the whole thing worse.

So today when I saw the nurse ( a new one) we discussed the whole problem and then she took me off to see my doctor (felt like a kid hauled up before the principal for being bad) and he and I discussed the problem. He did understand how stressed it makes me to not be able to get those pills down and he did have a few suggestions to help along with a prescription for another PILL!!! I just looked at him ready to burst into tears at that point. He said “I know, another pill!” But this is what they used to give to chemo patients intravenously and he said it is anti nausea as well as helping with mobility and getting my stomach moving and not letting stuff sit there too long. So I left there with a prescription for that (Metoclopramide HCL) and a box of samples of some kind of anti-heartburn prescription stuff that is again in pill form.

I went back to work but just felt so crappy that I didn’t stay all day. Left early and went to EI to see where I stand and what I have to do to get some help with Medical EI and then to Jude’s where I sat on the swing in the garden in the shade and settled my stomach and discussed the whole thing with her and told her what the EI ladies had told me. I think what it comes down to is I have to have a doctor’s note (no problem) and then show a stoppage of work where I have lost earnings. I will be better off to just take two weeks off and use that as my stoppage of work than work each day for as little as 2 hours before conceding defeat and going home again. I haven’t finished reading it all or making a family doctor appointment but I think that is what I will end up doing. Then I can adjust my work to how many days I can manage and have the medical EI as backup as needed. Also I have temporary CPP Disability to find out about.

So I got home last night and went and got the prescription filled and took one of those magic pills and man did that work!! I got the rest of the day’s pills down and took my third shot. When I got up this morning it was the strangest thing, no nausea but I threw up! Then all was fine and I had some breakfast and ate the pills including the magic pill. I delayed my work start today until 9 and had an easier start to the day. It’s now 1:30 and I’ve taken another magic pill and I’m starting to gear up for the 2pm pills which I will manage and the day is definitely going better. Only problem so far with the magic pill is it makes me even more tired but it is way better than nausea. I am going to go for a short walk after work and hope this is a new beginning for getting the pills down on a more consistent basis.

Shot #2

Week 1 is done and I took shot # 2 last night. I’m taking all my pills and I was back to work Monday morning. The day was fairly rough and I left an hour early. Tuesday I had to be back at the hospital for blood work and to check in with the nurse. All was good and I was back at work by 12:30. The rest of the day went great and I felt really good.

Work is being very supportive and I can set my own hours as to when I am here etc. and that really helps a lot with the stress. Talking to the nurse yesterday I realized my headache (right where the base of the skull joins the neck) is probably caused by stress. Also during all of last weeks trying to get the pills and all under control and missing 4 days of work had me pretty much freaked out for awhile and on Saturday morning my back went into spasms!! Also probably stress related she thought. So I am really trying to take the pressure off myself as far as I can and allow some things to slide a bit if they aren’t all that important. I nag myself to death on a regular basis and I’ve decided to stop it and get a little more laid back.

This is going to be a year of cleansing for me, both physically in cleansing the virus or trying too as well as mentally and emotionally. I’m going to spend this time of treatment being kind to myself and pampering myself where I can and just getting through all this as best I can and not beating myself up for stupid little things like the housework or whatever. I’m going to let a whole lot of baggage go too as I really have no control and I’m not going to worry about what I can’t control.

My friends have been wonderful and are rallying around at every point. Jude and Lynne have both phoned regularly and Jude took me into the hospital yesterday so I didn’t have to drive. Lynnie and Al had me for dinner last night and we took Lacey for a walk after dinner and got some fresh air and a bit of exercise. Sue has been phoning and emailing and my Mom is in touch daily. Even the boys are staying in touch and making sure I don’t need anything so I feel like I have a wonderful support system all the way around.

Anne

Day 3

Today was a somewhat better day. I never did get a gravol down last night as my stomach was very queasy still and I had stopped throwing up by dinner time. I slept and at 6:00 am I did manage to take 2 gravol. At 9:00 am I took two Trelapravir then spent the rest of the day battling nausea. This evening Jude and Lynne came over and talked me into trying gravol suppositories and then a little herbal remedy and my stomach finally settled. I have to try and eat something now and I would like to try and take 2 more trelaprivir before bed. Tomorrow I'll try to stay ahead of the nausea and take all of the Trelapravir and introduce the ribavirin again.

I've talked to the nurse again today and she says to go at my own pace as I need to be able to eat and drink or it will become even more of a vicious cycle. So right now I am going to try and have something light to eat and take my 2 pills with it.

Work is being really good and telling me to take my time and get the drugs stabilized in my system and all is fine.

Day 1 & 2

Quick update cause I know people are wondering. I am sick as a dog and have been throwing up steadily every half hour since 11:30 last night. I've talked to the nurse and the plan at the moment is to get some gravol down me and try to hold it in for at least half an hour and let it disolve. What I have been throwing up is bright bright yellow and very medicinally tasting so we are thinking I am definitely getting the talaprivir along with the interferon and ribavirin. 12% of people on tralaprivir have this reaction so she will talk to the study people to see how to control this, I'll take gravol and ginger ale and we'll try again tomorrow. I haven't managed to take any pills today with all the throwing up but yesterday I had interferon, 5 ribavirin and 7 telapravir so she thinks I just have a sensitive stomach for the tralapavir and I just got overloaded. Sorry this is a little disjointed but I just feel so bloody awful.
Anne

Start date

Finally they called today. I was starting to get nervous that they had found something wrong in my bloodwork or something it was taking so long, or at least it seemed that way to me. My treatment buddy started a couple of weeks ago and she is in group C so she doesn't have to take the ribavirin and she says so far so good and hardly any side effects at all.

I have to be at the hospital by 8:45 on Tuesday the 8th of May so I am going to go into my Mom's after work on Monday and spend the night there. She lives a lot closer to the hospital and it will make it much easier than fighting traffic all the way in on Tuesday morning. That drive totally stresses me out as I never know how long it's going to take me and I'm always worried about being late. I hate being late for anything.

I'll be there about 4 and a half hours approximately and have to have blood taken right after the first dose and then again at half an hour, 1 hour, 2 and a half hours and 4 hours and then I get to leave. I will have time to get home and take my tylenol before the sides kick in. Last time it was exactly 8 hours after the shot of interferon that I got the flu like symptoms and I just went to bed and slept it off. I have always had trouble taking pills so I avoid tylenol and just suffer with whatever ails me but not this time. This time I plan on taking the tylenol and motoring on instead of just suffering.

Now I spend 3 days alternating between Yes!!! we are getting on with this! and No!! I don't wanna do this!! lol Last time I went I tried to talk my husband into taking me home all the way into town and the hospital. I even informed him it was my body and if I had changed my mind and didn't want to do this then I didn't have to and on and on. He just said "Unhuh" and kept driving. I think it's that last gasp of "Are you fucking insane!!! Why would you poison yourself for 48 weeks?" and then sanity kicks in again and you know this is just something you have to get through so you might as well just go and get it over and done with. This time I am doing it on my own and I already know what to expect so the whole process should be easier. You think??

Ah well. I'll update often and I am going to try and keep a good record of sides etc. Positive thoughts!!

Treatment buddies

I got a message on the board from another lady (L) who is starting on the Telaprevir (VX-950) drug trial around the same time as me. She is starting on Monday the 23rd so she'll be about a week or two ahead of me. We have decided to be email treatment buddies. I know it will be helpful to have someone else going through this at the same time to talk to.

Here is one of those stupid vanities we are sometimes guilty of. Last time I had treatment they told me I shouldn't get my hair dyed while on treatment and didn't give me a reason why. I followed instructions and didn't dye my hair but I absolutely hated all the grey coming in. My hair was quite long and by the end it just sort of hung there with no life in it at all. As soon as I was done treatment I went and got it cut and dyed it. I was red in those days or auburn I guess. Well last year I cut my hair short and dyed it blonde and I was really happy with it and everyone around me seems to like it. So one of the first thoughts I had was about my hair and what I was going to do about it.

When I saw the nurse on Friday and we went through everything and I had asked my questions and was getting ready to leave the nurse asked if I had any last questions and I suddenly remembered the hair dye issue so I asked. She said that interferon kills hair follicles and that is why you lose hair on treatment. She said the dye would kill more follicles but it was entirely up to me. If I wanted to get my hair dyed and risk losing extra hair that was up to me. Well i have a ton of hair and even with losing a fair amount it was still pretty thick so I decided I would risk it. I have been thinking about what Miss Poppy said to me on the board about using the next couple of weeks to pamper myself and so today I phoned and made the appointment to get my hair cut and dyed before I start (save some of those follicles!) So I shall be going forth into treatment looking my best and feeling really good about it too.

I had to laugh when I got the last email from my treatment buddy L too. Last time round she lost a lot of weight and so did I. She's just quit smoking and says she has become an eating machine so she doesn't mind losing some weight, well ME TOO!! Gotta look for all those silver linings, be positive and be thankful for getting the chance to be part of the trial. I know I sure am.

So this is what I know so far about how the drug trial will work.

There are 4 arms to the study.

Group A will receive Pegasys, Copegus and a "placebo" for 24 weeks followed by Pegasys and Copegus for 24 weeks. (Group A will return to the clinic at Week 26 to discuss treatment options, which include access to telaprevir through a rollover protocol)

Group B will receive Pegasys, Copegus and telaprevir for 24 weeks followed by Pegasys and Copegus for 24 weeks

Group C will receive Pegasys and telaprevir for 24 weeks

Group D will receive Pegasys, Copegus and telaprevir for 12 weeks followed by Pegasys, Copegus and a placebo for 12 weeks.

Needless to say I would take Group B as a first choice and then Group A (as long as the telaprevir kicks in at week 26) but I'll take whatever I get. I also found out that 440 adults will take part in the study at approximately 60 medical centers in North America and Europe.

Friday the 13th

It's a good thing I've always considered Friday the 13th a lucky day. It was a long day yesterday but we got everything done and now I just have to wait and make sure all my tests come back fine. My nurse told me that it will be about 2 weeks so they will call me either the last week in April or the first week in May and then I just have to go in and get started.

I got a call the day before to say I had to fast for 4 hours before my appointment at 10AM so I didn't have anything when I got up in the morning. With rush hour and all the road construction going on everywhere all over Vancouver (getting ready for the Olympics in 2010) I left at 8AM and pulled into the underground parking at the hospital at 9:48.

I met my nurses, got the rundown of what we had to get done and then they left me with the 20 page informed consent form to read and a pad of paper to jot down questions. My only questions were if 1) If I ended up in group A which got only interferon and ribavirin and a placebo for 24 weeks, would the rollover into the vertex drug be at the end of the 24 weeks or the end of the 48 weeks. and 2) if the drugs gave me anemia again as I assume they will as that is a side effect of both ribavirin and telaprevir, can we just lower the dosage instead of being taken off the drug until my counts improve.

She said that on question 2 she was pretty sure that they would lower the dosage because they have learned you are better off to have a lower dose and stay on ribavirin than go off the drug and then back on again and on the first question she thought it was at the 26 week mark when they meet to tell you which group you were in and tell you what's happening with your results so far. So I could end up in any of the 4 groups and each gets the telaprevir at one point or another. It is Pegasys and Copegus that we'll be getting.

I had an ECG, multiple vials of blood taken, a physical exam, urine test, eye examination, weight and height, blood pressure, signed and initialed 20 pages of consent and was there for about 3 hours. I left and went looking for food and drink!! Then I hit the freeway back to work and got back around 3PM.

I was happy to read the Prove 1 Clinical Trial results. My nurse was very positive about the drug too. It's going to mean lots of trips in to the hospital for the first few months but that's fine. I need to increase my fluid intake now and get used to drinking water. The nurse said to get some crystal light and mix that in with it and see if giving it a flavor helps. Plus she said if I want a cup of coffee in the morning I can have one. The Hepatitis clinic has moved into a big new facility still attached to the hospital with all new everything so it's really nice and I liked all the nurses that I've met so far. They seem very informed and she was happy to hear about the online support network the forum provides whereas last time they told me to stay off the internet as most of the information out there was wrong. So all in all I feel very positive about all of this and my only worry now is how the drugs will affect me and what group I end up in and will I be able to stay on top of the fluids I need.

THE phone call

I just got the phone call from the Dr.'s office regarding the VX950 drug trial. I have to be there on Friday the 13th (it has always been my lucky day!!) to go over everything, have blood work, a urine test etc to make sure I qualify for the study. I had a biopsy 2 years ago so thank God I don't have to have another one.

There are four arms to the study and it is decided who goes into what arm with a flip of a coin and one of the arms doesn't include the VX950, just the Interferon and Ribaviran for 48 weeks. The other three do have the VX950 in them in various combinations with the Interferon and the Ribaviran. I'll know more after the meeting. She also said only 8 or 9 are going to be in the study and I will be his only patient in the trial so I really do consider myself lucky! The nurse said if I have not attained SVR by week 12 the trial is done for me.

OMG!!! I am now going to alternate between sheer panic and "Thank God let's get this over and done with" until Friday.

Spring showers...........

May bring May flowers but man it would sure be nice to see the sunshine for an extended period of time. Friday was gorgeous and the temp went up to 22 and Saturday was quite nice. Yesterday it was not bad and this morning the rain is coming down in torrents. Oh well, round about June I should be complaining about the heat!!

Lynnie and I got in a good walk on Saturday and took Miss Lacey with us. I usually show pictures of her sitting looking pretty, well this is what she likes more than anything, to get out into the bush and dig herself a nice big hole and crawl into it and roll around. Then she is a happy little girl. We call her the "No Fear" dog. She jumps from great heights, loves to swim, dig and run. I also call her my little mud pit!! She is not the delicate little lap dog I expected but I love that little face of hers dirty or not. Mr. Nemo is a lovely boy. He is very clean and proper and he lets Lacey just mall him.

I am off to Lynnies for dinner tonight and then it's back to work tomorrow. I have heard nothing yet about the drug trial and might phone next week and see if there is any news.

Spring!

Wow, it's been so long since I've updated I'm not sure where to begin! Carol nudged me to make a new post and I promised her one this week so I better come up with something. So.........what's new?

Well, I signed up for an art class with Jude and Lynne. It was 15 hours or 5 Saturday mornings from 9:30 - 12:30 and was based on the Betty Edwards book, Learn to draw in 15 hours with the right side of your brain. We are finished it and enjoyed it so much and the progress we made was so amazing that we have signed up for the second part of the course and that starts in April.

My friend Sue came down for a weeks visit and I enjoyed it so much. I mentioned in an earlier blog that she has been diagnosed with stage IV Lymphoma with spots appearing in her liver. She looks fine and is not sick at all right now. She sees the doctor every 3 months and has blood work before she sees him each time. They will not do any treatment unless she starts to show symptoms or gets sick and then they will do the chemo and radiation but have told her it is not a cure, it is only to hold it at bay basically.

While she was here I still had to go to work each day but it still worked out really well. She got here on the Thursday and Jude picked her up here in Langley at the bus depot and they went shopping and hung out till I got off work. Then being Thursday we had girls night and it was my turn to have the girls at my place. Josh had given me a chocolate fondue set for Christmas so we had veggies and dip, 7 layer dip and cheese and crackers and then we did the chocolate fondue with fruit and cake and whipping cream......OMG it was sooooo good. Then I worked on Friday and then Saturday morning we had our art class and then Jude and Sue and I headed for the ferry and went to the island and visited with Barb in Comox.

We had a great time over there with the Sunday being a gorgeous sunny day. We walked the beach and then went to Barb's work (a fish packer and front end store outlet) and picked up a couple of big bags of salmon heads and took them down to the beach where Barb's friend Mona lives. We dumped out the fish heads on the beach and got our camera's out and watched first the seagulls and then pretty quick the eagles started coming in. I counted about 12 of them in total. I got some pictures that were pretty good. (I'll post them when I get home. Right now I'm at work) We were over there from Saturday until Monday and came home Monday afternoon. Sue stayed until Wednesday and then I took her to the bus.

I am going to try and get up to visit her as often as possible this spring and summer. She is 4 hours away from me so I can leave work on a Friday and be there by 10 that night even with stopping for dinner along the way. I could start treatment at any time or she could get sick and need to start treatment so we need to enjoy this spring and summer and forget the bad stuff while we can and that is exactly what we plan on doing.

My little granddaughter turned 4 on the 23rd of February. Hmmm I guess I haven't mentioned her hair............ Well for Christmas besides the clothes and toys I got her I also made a trip over to the dollar store and picked her up a little tool box and filled it up with office stuff like tape, post-it notes, pens, pencils, erasers, glue sticks, note pads and a pair of small scissors. She loved it and had post-it notes stuck all over my apartment. Unfortunately she used the glue sticks for lip gloss......................but the worst thing was she got ahold of the scissors when nobody was looking and cut the end off her pigtail. My son phoned to inform me that Christina had used MY Christmas gift to cut her hair with. I informed him that what goes around comes around and told him how he had decided at 3 to cut his hair and had got ahold of scissors and given himself a reverse mohawk!! Yes, that is correct. He took the scissors and held them on top of his head and just went clip clip clip right down the center of his head so he had a nice little bald strip down the center of his head. He thought that was pretty funny.

Well two weeks later Christina got into Allie's scrapbooking stuff and found some shape scissors. Allie went looking to see what Christina was up to and she was in the bathroom with the door shut. Allie asked her what she was doing and she said "Oh, nothing I'm just brushing my teeth" Finally Allie insisted that she open the door and she stood there with the scissors in her hand and big chunks of hair missing from all over her head!!!! Allie just about had a heart attack. She ended up shaving her head completely and then she took a picture and sent it to me. I phoned to talk to her and as we were on the phone Christina came up and handed Allie and baggie full of hair! Needless to say she looks like a child who has recently had chemo. I have pictures of that too so I'll post a bald baby pic when I get home as well.

I had her for a sleepover for her birthday and we had a ball. She wanted to go to the dollar store and get makeup so we did that. She wanted a baby doll and carriage so we did that too and then I found her the cutest little outfits. She is getting her own taste in clothes though already and will only wear stuff if she likes it. I went to get her some new runners to go with her new outfit and we wandered up and down the isle looking at all the shoes and runners and she spotted some bratz runners and had to have those. So we looked and they didn't have her size so I tried the next size up and they were too big but she insisted they were good so I let her wear them around for awhile until she conceded that yes they were too big so back to wandering up and down the isle looking and all of a sudden she saw the Pokeman shoes and those were the ones she had to have. We looked and they had her size so I put them on her and she loved them! She ran up and down the isle to see if they were fast (???) and she jumped up and down in them and said, "Oh Grandma I love these shoes!!" and she looked so happy and then all of a sudden she says, "Grandma, these are girls runners right?" (They were black, grey and white and yes probably boys runners) I said honey I think they are for both boys and girls and either can wear them. That answer made her happy and she wore the shoes for the rest of the weekend. She also wanted a princess nightgown and an ariel swimsuit. When I took her home on Sunday she fell asleep in the car and when her dad took her out he laid her on the couch and took her shoes off. Well big mistake! She woke up crying and nasty and when he asked her what was wrong she said I want my shoes!! I called her that night before bed to tell her how much I enjoyed her company and that I loved her and she was running around in her new princess nightgown but also had to have her shoes on too. I'm sure when she goes to daycare and the other kids tell her they are boys shoes she is going to inform them that grandma said they were for both boys and girls!

The weather is warmer but a whole lot wetter but at least I can still drive in the rain and haven't had to miss any more work due to snow days. Lacey and I have been doing alot of walking and we both are enjoying getting out more rain or shine. Lynnie comes with us quite often and sometimes it's Josh but I am going on my own more often too. I found an off-leash area along the dike and we go there. Lacey loves it and can run and play and she meets lots of other dogs. All good for her and for me.

I've been doing ok but am getting anxious to get on with the drug trial. I am getting back some of the symptoms I had before treatment last time. I wake up feeling crappy in the mornings and fight nausea for awhile. It goes away in an hour or so. Lots of heartburn lately too. The odd scary chest pain that I ignore and it does go away. Not too much energy. Go to work, come home and basically do nothing for the rest of the evening which means most housework gets left for the weekends. I take care of the animals, clean the litter pan etc but other than that I don't do much. I am forcing myself to spend less time at the computer and more time reading and drawing. Waiting waiting waiting is what it's all about at the moment. Feel like I'm in limbo and can't really make plans or move forward until I get the treatment thing under control. What will the treatment consist of, how many drugs, how long will I have to take them, will I miss work and if I do how will I pay my bills, will I get the horrible rash everyone talks about and on and on with no answers until I get the phone call saying drug trial starts and you need to come in for the meeting and sign the informed consent.

Well I better get back to work here and I'll post some pics when I get home and find them :)

Snow

It's snowing hard and beautiful outside but the roads are bad so I've elected to stay home and stay snug, warm and safe today. My babies love to sit on the window sill and watch the snow fall. There is a little black squirrel who hangs out in the tree across from the window and he drives Lacey mad. She growls and whines at him and it generally keeps her occupied and interested.

I was doing the T4's at work yesterday and came across this as I was reading instructions

"a) Remuneration paid to the employee:

before and during the month the employee turned 18;
after the month the employee turned 70;
during the months the employee was considered to be disabled under the CPP

so it got me to wondering whether or not I can collect CPP Disability if I get sick and can't work while I am on treatment. I also have an appointment with my family doctor on Friday so I can get bloodwork done so I'm going to talk to him about it and see what he says. Three must be something that will help other than having to go on welfare!!

Work is going well and I am feeling OK. Tired alot and heartburn is getting really bad but other than that I am fine. Just want to get going on treatment and get it over and done with.