Tuesday, May 29, 2007

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.


Wednesday, May 23, 2007

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.

Wednesday, May 16, 2007

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.


Thursday, May 10, 2007

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.

Wednesday, May 09, 2007

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.

Friday, May 04, 2007

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!!