“No Bed of Roses, No Pleasure Cruise”

...link to my post tx blog

2009-02-23T20:32:00.003-04:00

http://rose-thelongandwindingroad.blogspot.com/

Haggard & Hollow-Eyed Injection 72

2009-01-25T21:21:00.005-04:00

My "chocolate lovers delight" cake. My celebration cake!

I considered this treatment for Hepatitis C as a “tour of duty” that I had to endure and see to the end. It became a quest and while it knocked the stuffing out of me and has taken over total control of my life I pushed through it. I won’t receive a medal, certificate of achievement, or 15 minutes of fame in the news or on the television, but I will know that I persevered to complete it. What an achievement and I know I did my best.

Sunday, January 25, 2009 I injected the last needle of interferon. It's a miracle that I made it without being hauled off the treatment.

I hope you don't think I'm a drama queen regarding this, but it was a fight from my first diagnosis on December 18, 2006. I fought, lied, cheated and withheld information from the nurse practitioner (and my doc) as soon it became glaringly clear that she would haul me off treatment for the most stupid reason.

I had to suffer six more months extra of penance (from a 48 week treatment to a 72 week treatment) when things didn't go according to the clinic’s protocol and I made it. The bar was set pretty high here. It was pure anger and determination that kept me going along with the fact that I investigated the virus and had help from a Hep C forum located in England and in United States. The nurse knew that I wasn't going to "lie down and show my belly.”

I would negotiate everything with her to stay on full dose of the treatment or worse ...getting my script shut down. I was threatened with these options constantly. I would struggle into her office haggard and hollow-eyed, grey pasty skin and my tufted out thin hair and she would eye me trying to figure out how to sabotage my journey. She became the enemy. She became someone who could kill my chances of completing treatment if things weren’t perfect. She knew it was brutal and I wasn't going to give in...I signed up for it and I pushed to keep going.

I withheld information and side effects from her and my husband and I know that if I had of dialed 911 the night of the propane "poisoning" the local hospital would have not allowed me to continue and the nurse in the city would have let that happen. I would have been hauled off in a heartbeat. The list of sides that I suffered was relentless. I suffered continuous ache in my liver area and it's because of the strain on the liver dealing with such horrible chemicals. I had two lung x-rays once at the beginning of treatment and once when I complained about the side ache. It was all clear for chest problems.

I constantly battled fatigue, dizziness and brain fog. These were sides from treatment and mainly because my red blood cells were pushed so low I could hardly function.

I did report my eye problems and they sent me to an eye doc in the city and he determined it was migraine flashes and not bleeding retinas (caused by the tx) I managed to overcome hurtle after hurtle and learned to "sit down, shut up, hang on and go for the ride." My vision isn't the same as it was and I am hopeful that it will improve once I am clear of the chemicals. I’m tired of having all the blinds closed and running around the house with sunglasses on all day. My husband told me recently it was like living with a rock star. The vision will eventually right itself, I hope. It will take time.

I have had chest pains which I was supposed to report, but knowing that I would be hauled off treatment. When I experienced this pain I didn’t tell a soul. My red blood cells were so suppressed that the lungs and heart were sucking for oxygen. I just lay on the couch those days to see if I could get through it. I knew that the "heart ache" I was experiencing was a warning sign and the nurse would have hauled me off the treatment. ...and the extreme exhaustion and fatigue was always there.

I had the ultimate hypochondriac’s wish list of side effects. BRUTAL I want my life back and it will come with time.

# 70

2009-01-11T20:36:00.000-04:00

I just injected #70. Everything is moving in slow motion. I am worn out and sick. Of course, I’m still angry as hell over this diagnosis and the extended treatment from hell. It was my choice, but I never bought into 72 weeks.

My father-in-law has been combating serious health problems and has been in and out of intensive care since before Christmas. He ended up there the other night with a bleeding ulcer from the blood thinners. My Mother-In-Law is needy (justifiably so) and is clinging to her son.

My husband is showing the signs of stress and fatigue from trying to appear to have a stiff upper lip through crisis after crisis. The propane scare really upset him because he felt responsible. When someone is on any type of treatment for any reason they do need to be looked after and I think he thinks he let me down and it could have been very serious.

Now he’s dealing with his father being seriously ill.

One thing about treatment you cannot predict how your life transpires while you are on it. You seem to get hit from all sides with “life going on” while you are battling your own demons.

The refrigerator repair person was back to replace the part that was ordered for the fridge and he was horrified at what happened regarding turning on the gas stove accidently. He called his supervisor immediately and this company is going to file a report to Maytag regarding this hazard with this type of stove. I expect that someone will be contacting me to come and determine what happened so that it never happens again to anyone else.

Injection 69 This Evening

2009-01-04T20:27:00.001-04:00

Well, my husband and I used up two of the kitty’s nine lives on Friday. We had a huge blizzard here in Atlantic Canada. The whole day was upsetting regarding our snow removal as the contractor the group hired to plough the neighbourhood dropped us on the day of a huge storm. That was a struggle to get someone to plough the main road and our driveway.

A repairman came to try and repair our fridge ( that is less than a year old ) and left around 4 p.m. Anyhow, he accidently switched on the gas stove while he was repairing the fridge and I thought it was rotten food from the freezer that had melted and warmed up on the drain pan. It’s a three step process to turn the burner on the stove. You have to press the button in hard, wait for the flint to “tick” and then wait for the gas to ignite. He pressed it in (probably with his side or butt) while dealing with the fridge and by passed the “tick” and the burner was left on putting out full on propane.

The defrosting switch is malfunctioning and he took the fridge apart and used a heating gun to defrost the fridge. I noticed a vague rotten food odour when I came upstairs as he was leaving. I was really perplexed with that because I thought I was a good housekeeper, but figured that he must have heated something up in the drip pan and it was stinking to high heaven. He had an old towel to catch the water that dripped out. I turned on the outtake fan above the kitchen stove to see if it would clear out. I also turned on the outtake air exchanger in the bathrooms to clear the stink out of the house. It could have saved my life.

I went downstairs after they guy left and my cat howled and yelled from upstairs and I kept speaking to her thinking that she was calling; now I’m not so sure. Asian cats tend to call for you with a howl to see if you are around. I was thinking it was odd that she was calling for me even though I answered her several times and that I should go upstairs and see what she’s into, but now I think she could smell it and was calling to me.

It was a comedy of errors and my husband who is usually home by 4:30 p.m. each day for the evening. He would have eventually figured it out. He came home to have his supper and race back out to do his job. However, when we had our supper I turned off the outtake fan and my husband determined that the odour was on the towel and we washed it. I smelled in the fridge and the freezer and determined that it wasn’t the inside of the fridge it had to be the work the repairman did and he set of something stinking in the defrost pan. I was confused to why it had such a rank odour. We micro waved supper and husband rushed out to finish his work for the day. It was just not a normal night. Husband is usually home. I went downstairs and I was down there on the computer and watching tele until husband came home at 8 p.m. I was still confused why the odour was so strong. I came upstairs and changed into my bleaching clothes as I was determined to try and scrub the area to see if I could get rid of the rotten food odour...even though I didn’t have the energy or strength to do it. My husband came in the door and started to open doors and windows and I checked the fridge again. At this time the fridge turned off and I could hear “sssssssssssssssssssssssss” I came around the stove and asked my husband if he put the kettle on and he said no. The burner was left on full for four hours. The house was full of propane. I had to get outside and we had to call the propane company. I know I should have gone to the out-patients and had oxygen, but I didn’t because I didn’t want to explain these meds to the local hospital.

I am so sick I cannot reason anything out in my brain on this treatment. I was in the propane for a full four hours with the propane full on. It was the power burst burner and it is set to run full out for high heat fast. I vented the odour out of the house out for the first hour thinking I was clearing the room from refrigerator stink. As I became more overtaken by the fumes what reasoning and logic I had left was nil.

I have smelled propane from industrial, bar b q, while I am cooking and it NEVER smelled like this before. We are super careful with the gas stove and we always check it to ensure it’s not on, but I was thinking refrigerator, NOT propane.

I always try to keep the fire going in the woodstove (located in the same room) and I’m always switching light switches off and on. For some reason I never went near the wood stove and it went out. My husband always checks it when he comes home and just by luck he didn’t but he was surprised I didn’t keep it going. I was so lethargic and stupid from nearly being poisoned along with tx I am amazed I didn’t drop. I was dizzy and confused, but I thought it was tx. The kitty was downstairs with me all the time as the gas was building upstairs and by 8 p.m it was through the whole house.

It was such a comedy of errors and I am very fortunate that my husband and I are still here. I’ll never doubt my little kitty when she flips out and acts weird again.

Injection 69 this evening in another half hour. Three left following this shot.

RR

Week 67

2008-12-28T14:41:00.001-04:00

As I crawled into my disgustingly dirty bed sheets at 67 weeks of treatment I am irritated and pissed off over how much chaos my whole life is in since beginning my Hep C treatment. I know that my sheets are dirty, but I have no energy to pull the sheets off the bed, vacuum the bed and pillows, wash the sheets in hot water and remake the bed. I am resentful and disgusted that I have to put up with this situation. The Others here are asked to take the sheets off the bed and wash them for me, but it’s been many weeks and I just cannot do it myself. They conveniently forget within a few minutes.

I cannot find a set of towels that match and every cupboard in the house is in complete shambles. The Others ask me where things are and I cannot even figure out where they’d be because the Others have shoved them into places I’ll never find. The Others look at me for decisions what bowl to put the chips in and I just look at them and tell them to figure it out. I hardly care if they serve them in a jam jar. I have not been the hostess extraordinaire this year and a half, but they still think I know where things are in the house.

The Others still won’t make an effort to replace the toilet roll, refill the paper towel roll, refill the soap trays and containers, make fresh ice or put stuff away. So, guess who still has to do it at the times when I need the items. It’s like they reappear like magic to them. I resent it terribly because I waste my energy on those little things and cannot focus on big things I need to do like struggling to make something to eat, grooming myself, cleaning the toilets, etc.

Christmas dinner was held here. I was on tx last Christmas and it was extremely rough. This Christmas was the same. However, my 81 year old Mom was hell bent that I wouldn’t have to do anything. She is nearly 82 (in February) and she caved on me by 1:30 p.m. Christmas day with a houseful of people and dinner to be served at 6 p.m. My sis and her husband were forced to peel vegetables and they were shocked that they had to do it. When I wasn’t on treatment I did most of it. I didn’t care what they thought this Christmas as I warned them I couldn’t do it. My Mom doesn’t know I’m on long term treatment for Hep C. She thinks I have an autoimmune disorder and the medication is pretty rough right now. My sister knows that I am on tx for Hep C and she said to me on the phone earlier in the week...”Well, you only have five weeks left...”

No clue.

Of course, my in laws came very early, and nothing kills a happy conversation so quickly as my Mother-In-Law. My rellies sat there in almost stonie silence once she arrived.

I sat on my arse and hardly moved as I couldn’t do a thing. Husband was in charge of turning on the oven (so I wouldn’t have to deal with it) and after the turkey was in for an hour I asked why the fan was running. He shrugged his shoulders. I quizzed again after a half hour and asked husband to check the stove and he had it on broil. I was seething, livid...but I kept control of myself. I stewed for the rest of the day over it. One job to do, he has been taught how to turn on the oven a few times and he still screwed up a major thing. The meal was terrible (too many cooks) and I was a rabid, nasty, bitch by 8 p.m. after they all left a huge mess. One of the Others, my husband, did what he could and I tried to muster up the energy the next day to continue the cleaning. I was not extremely successful at getting very much done. I was licked, but I managed to get it a quarter of the way cleaned.

There is no fight left in me, but I expect I will be ripping a strip of the others when I have the energy. I need to get away from them as much as possible by myself when I am able to drive.
I tried desperately to get out of this huge meal, but my Mom was insistent and for the sake of keeping my medical situation a secret I wouldn’t give out the true story. However, from my sister’s response on the phone, I’m sure they still wouldn’t get it.

Injections 65 & 66

2008-12-16T10:33:00.001-04:00

Hi
Well, I had my hair cut on last week and it’s nearly the haircut that my mother gave me in the early sixties and I cried for days over it. LOL I wanted her to glue it back on my head. There is nothing I can do with this hair until I get rid of all the chemical ruined hair and I get re-growth. There is no recovery it was so lifeless, wispy, dry and thin that it was flying out from my head all the time. I looked like I was semi electric shocked and it felt as if I were wearing an inside out fur hair band around my face. It itched me to death and drove me nuts. It’s gone now. I look like a pin head and I won’t be going anywhere for a long time. I really don’t want anyone to see me with the Olive Ole look. If I wear a turtleneck it covers my long neck. I still look like Olive Ole in a turtleneck.

Interestingly, my nurse practitioner told me at my last appointment that I was her first patient that she had to tell to EAT! “Stuff, yourself and eat, eat, eat!” I try. She said most of her patients come into tx with extra weight on them and the weight loss isn’t an issue. I started my tx with a great BMI for my height. I dropped 16 lbs very quickly and I still fluctuate between 134 and 137. However, my blood sugar dropped like a ton of bricks on this treatment and I battle that issue every day.

I am in very rough shape these last couple of weeks. I have been plagued by sick headaches and vision problems. My vision problem was checked out months ago and the eye specialist determined that it was migraine auras without the migraine. Well, these last two weeks I have been getting sick headaches. I have a clinic appointment this week so I’ll check with the nurse practitioner even though I am scared to admit anything to her. There is always the threat to haul me off the treatment.

62,63,64

2008-12-02T13:01:00.001-04:00

1962, 1963, 1964 are very vivid to me. I can remember the days of Barbie Dolls and the glamorous outfits. I had one Barbie Doll evening gown that was a black mermaid bustier with long black gloves and black dress shoes. Wow, I thought that outfit was the Cat’s Meow. I can remember many days of taking my little red Barbie Doll suitcase and walking to a friend’s house for a play date. It was basically going over to Juile’s house to play, but now they are called play dates. LOL Her older sister had a job and bought her a new Barbie outfit every payday. Wow! I only received a new Barbie outfit for Christmas or my birthday. Sometimes when I get the smell of plastic as an adult it reminds me of Christmas and receiving a new doll.

I also remember those days in elementary school where we actually made a habit of going outdoors and having fun. I can remember the teacher bringing in cookies and treats for special occasions like Christmas, Valentines, Easter and Hallowe’en ... now the food police have moved into our lives and they have even banned what kids are allowed to eat in schools and are only allowed to serve healthy food. Basically, when I was growing up that’s what treat’s were...special occasion goodies.

It must be the rebellion in me to resent the food police. I am so tired of being dictated to regarding what is best for me.

I have too much time to think while on this treatment. I can’t wait to have a life back. LOL

The days are pretty well much the same on this treatment. I am so exhausted, sick, mentally wrecked and angry all at the same time.

I am getting no ease up from the interferon. I used to be upright by the next weekend following my Sunday night injection. However, those days are gone and I am going nowhere and doing very little.

My Mom won’t let me out of hosting Christmas dinner because she insists that she will do the work. It doesn’t happen that way. I get the arse run off me “getting this or getting that”. I can barely stand following the event. It took me four days to clean up after the last dinner because I could only do things in small amounts. Of course, she doesn’t know I’m on chemotherapy. She nearly kills me with these family dinners and I am still smarting from the last one I didn’t have because everyone else was invited out for Thanksgiving dinner and we sat home and stared at the walls. I had hoped that someone would have invited us, but they didn’t. My boys understood what was happening, but they were shocked that I couldn’t do it.

This is not a pity party...just a pissed off party. Thanks Riba!

Food is tasteless, to the point it tastes raw, uncooked, rancid, stale. I just eat to take the pills and to keep my blood sugar in check. Imagine having the opportunity in your life to eat anything, everything and as much as you wanted only to be cursed with it all tasting like crap. “It’s like a black fly in your Chardonnay...”

Have I reached acceptance even though I have no proof?

2008-11-16T08:18:00.002-04:00

I knew I had to post this here because it's part of my Hep C journey.

Have I reached acceptance even though I have no proof?

I would appreciate input into something the Nurse Practitioner said to me the last time I saw her.

Of course, those of you who are familiar with my situation will know that have no clue where I picked up the hep c virus during my life’s journey to date. I was born and brought up in Smallville. When diagnosed I became a lost soul and I couldn’t accept that there was no answer to where, when or why. Many posters would come online and tell me that there was nothing I could do about it and just be thankful that I know that I have the virus and I’m treating it. The posters that wrote this pretty well knew where they picked up the virus so they reached acceptance. I could not because of the unknown. I was always pretty sure that I picked it up because someone was “sloppy in Smallville.”

Recently, two things have helped me reach acceptance.

The recent revelation that reusing syringes in operating rooms was a common in the 80’s & 90’s in Canada and US. I had several major surgeries and invasive testing done during this time of my life. Many times I watched them inject whatever into an IV in the operating room and in my hospital bed. They would come in with a filled syringe and inject it into my IV . As innocent as that seemed at the time, it shows that I had no clue that they may have drawn that out of a tainted bottle into a used syringe. This was very common at this time.

The other thing that helped is that I know from reading the forums that there is no set pattern to biopsy results. My biopsy results were excellent minimal inflammation of the liver between 0-1 (scale) at the time I asked the question on the form and was told that it means nothing regarding how long I have had the virus. I was always searching for an answer. Being a theorizer and I questioned NP last visit regarding my excellent biopsy results and if that meant that I had hep c a long time or a short time. She hesitated and said...”I would say that you probably haven’t been walking around with this virus for 40 years” .It seemed to settle me and I grabbed that theory because I needed to have an answer. I still want to hear forum member’s theories regarding this biopsy issue and my NP’s response.

RR

Genotype 1Pegetron 135 µg Ribavirin 1000 mg72 week tour of duty

Responses to my post

by Alvin on Fri Nov 14, 2008 4:37 pm
Rose,I'm not sure how anyone can know exactly the moment he/she got hep even if transfusions were involved. We may have picked it up at the dentist. My life style risk factors ceased entirely by 1971. I positively got hep B and probably C in 1967. That is 40+ years ago. My bx in March '08 came out stage 1/2 fibrosis on the Metavir (0-4) scale. I guess the point is it can hang around a long time and not completely destroy the liver. IMO, your NP is reading tea leaves or rolling chicken bones. . . or more probably assuming you led an alternative life style way back when.There's quite a stigma about the whole thing here in the states. That's one of the reasons I prefer UK boards. In the end, I guess we all have to be at peace with ourselves. I offer sincere best wishes on a successful completion of tx. After all, there's still a lot of life to be lived.

by pixie on Fri Nov 14, 2008 4:58 pm
Rose I know the transmission route has been difficult for you to come to terms with..I often think of all the dangers I had been put in regarding other peoples blood over the years.My Daughter Fathers first wife was a registered addict back in the 70s he told me story's of having to clean her and up take syringes out of her arms some days, he hated drugs and had to divorce her over the problems it was causing..He was a drinker tho and I endured many years of abuse from him ending with me being taken to Hospital to be cleaned up..who knows if he had it..?..he died when he was 50 tho he had a history of depression and manic behaviour...i once stopped to help a street man that was having a epileptic fit.I was covered in his blood ....I worked in a Nursing home back in the 80s before we had gloves issued and had a chap admitted he must have been a hemophiliac as I remember him having injections to clot his blood, he had lots of bleeds while he was there I remember mopping up the blood lots of times...and at this time I would have had lots of cuts working there...The list goes on .... I hope you can come to terms with it....not long to go now..px
Geno 1b.One of the 20% with no sides thru Treatment..Finished Tx March 07SVR October 07

Hey RoseMaybe if you knew why it bothers you not to know how you got infected it would help you come to terms with it. Is it because without a definite answer to give people you feel they may think you are lying to hide a druggie past, or is it that if you don't know how it happened then you could so easily get infected again in the same way. I think your NP is talking rubbish. I have probably been infected since 1976 when i also caught hepB and i have very minimal liver damage - stage 1/6.Good luck with coming to terms with itstar

by MYS on Fri Nov 14, 2008 9:25 pm
Rose -You started treatment fairly quickly after your diagnosis, I think that is partially the reason why you were fixated on 'how did I get this? how did this happen to me?' Then, the interferon magnifies these fixations. I waited over 8 years from the time I was diagnosed until I started treatment. In those first years, I just could not accept that I got it from the 1 pint of blood I had received - it just didn't seem possible that I would be that unlucky. I blamed and or suspected everyone including: my mother, who had an unspecified kidney and liver condition when she was a child - in the 1930's, passing it to me at birth, and I even wanted to get her hospital records from then. every dentist I had ever been to in my lifemass immunizations when I was in schoolall of the surgeries that I had I finally gave up (but not completely - I still wonder about it occasionally) trying to figure out how I got it. The pint of blood was the most likely source, and yes, I am that unlucky. Even though it was 1976, the hospital was still using the old rubber tubes (instead of disposable plastic ones) and glass bottles to hold and deliver blood. The cleanliness standards there weren't the greatest. (I picked up a bad case of ringworm on my butt after being there - why wouldn't the Hep C have come from the same hospital)?The point I'm trying to make, is that your need to know may be partially driven by the interferon, at this point. I hope you have finally accepted that you will probably never know how you got it, and that you'll be able to not think about it as often, once you're done your treatment and reach SVR.All the best,MYS
Formerly Hep C 2A/C 'Hybrid,' now SVR!

by jb on Sat Nov 15, 2008 8:47 am
I don't think the state of a persons liver is an indication of how long they have had the virus.... two people might get it on the same day, but their lifestyles are totally different... one may drink the other not... eating habits, smoking, work, sleep patterns etc etc would all make a difference as to the progress of the virus and it's damage to the liver....I too often think at which point in my life did I actually get this virus.... was it during my needle sharing day's 73-76 or a tattoo, piercing... from a jet gun at school.... my ex wife's first husband has HCV...... it is easier for me than you as I have so many transmission routes to choose from..... don't drive yourself in circles accept that you will never really know exactly where or when.... keep going Rose... I am behind you but catching up....
Geno 1a relapsed October 2007 2nd treatment started May 2008 for 72 weeks ....Brodo

by Really Rose on Sun Nov 16, 2008 11:05 am
In my heart I know that I’ll never know where, when or how I was dinged with Hep C. However, I might be reaching the acceptance stage of grief being diagnosed with this virus. It took me nearly two years to reach this point.Take CareRose

Injections 60 & 61

2008-11-14T07:23:00.001-04:00

Week 60 was brutal. My haemoglobin was low enough to suffocate me. The good news is that I had my bloods retested on week 61 and my WBC and haemoglobin came up to let me continue on full dose.

I was struggling with the haemoglobin last week and I was having mild chest pains. (I did ensure that I rested if I felt over did it.)

My life is sh%t. anyhow, I may as well keep going on this treatment.

I am so done, but what’s eleven more weeks after 61 weeks of hovering above death?
I am very irritated these days because everything takes so much effort. My coordination is out of whack. I’m teetering and tottering around when I’m walking. I cannot wear heels. I cannot get on an escalator or go down stairs without someone holding on to me. At home I do better on the stairs, but I have to really be careful in case I take a header. If I pick up something...I drop it. If I unscrew a cap of something...I drop it. If I go to put something on the counter I misjudge it...it drops to the floor. I miss the garbage can constantly so I have to bend down and pick it up and do it all over again. Might not be a big thing to someone, but when you can hardly function being so exhausted on chemo it’s a huge effort to do stuff twice.

I cannot coordinate my brain with my hand to turn off or on a light switch without missing it and having to go back and try again. My peripheral vision is also out of whack so that I am bumping into people when I’m out in public. My husband scares the sh%t out of me when he speaks and I don’t know that he’s around. My son’s cell phone is beeping in his room and I feel like going in there and stomping the sh%t out of it. The telephone ringing sets me on edge. If I turn them down husband turns them back up again. (Scared to miss a call, I guess)

I won’t give in!

Nurse Giving Me Some Attitude & WBC Critical #59

2008-11-02T08:12:00.001-04:00

It just goes to prove how it's a miracle to stay on this treatment. My white blood cells are what she called critical. I don't know what my Neuts are and she kind of mumbled over them, BUT if they are the same as they always were I should be OK for a bit. Everyone I know will be banned from getting near me. My neuts ranged around .7 or .9 the last few tests and even though they are grossly low I still have some protection. There is a drug to bring up white blood cells, but they will not offer these "rescue" drugs here. They will reduce the interferon first. Not a thing I am keen to do.

If I were anyone else, Nurse told me on the phone, she would instruct me to reduce the interferon (injection) from 5 to 4 and see if the WBC will come up, but she knows I won't do it if she asks. I told her she was right so she compromised and will give me another two weeks to see if my bloods come up. My hemoglobin is 9.3 (should be minimum 120) and my blood sugar is low which is strange for this treatment. However, I was told that any pre existing problems prior to starting treatment would probably be worse on treatment. I always had a tendency to have low blood sugar and it's a problem with this treatment for me. I was gloating that the blood sugar had come up you regarding my Sept 4 tests. I’m really thinking that having my blood tests done every eight weeks isn’t enough on this chemotherapy. The clinic is so cost efficient it’s nauseating.

Well, if my bloods do not improve in two weeks I'll agree to reduce the interferon for a couple of weeks. Then I'll try to go up to full dose again to try and get the last weeks in on full treatment. I'll deal with that battle if it comes. Nurse is mailing me my test results. She is also sending me blood tests to have done November 12, but I won't get them done until the Friday of that week on the 14th and that will give me another few days. She won't get the results until the third week. I also intend to get my script for four more weeks refilled a bit early so I have them in the refrigerator. Just as a precaution, but I expect if the bloods don’t improve I’ll have to take the interferon reduction.

There is nothing I can eat or do to bring them up. It's chemotherapy without rescue drugs. It’s like riding a motor bike at warp speed and not wearing a helmet.

I managed to get myself into another conflict with nurse.
I’ll give some background here.

Because the clinic is very stingy with PCR testing I was “allowed” one standard test prior to starting tx to determine my viral load and then I was tested at four weeks into treatment to see what my initial log drop would be on tx. It was determined that I had to do 72 weeks of chemo following that four week PCR test because I didn’t have the two log drop. The clinic would not test me until 24 weeks and I came back undetectable so I continue on from 24 weeks to 72 weeks without a PCR test to determine if I am still undetectable. It’s not logical, but it’s cost effective for the clinic without any regard for the patient who might have had a breakthrough in the virus and is taking this insecticide and rat poison chemical for nothing. I’ll not sugar coat this situation...treatment is harsh and brutal.

My argument with Nurse was regarding my end of treatment PCR (if I make it to 72 weeks) and what is the point of it? Here they don’t give a “rat’s ass” about you being undetectable from week 24 to week 72 and that’s a long time to leave someone on treatment if it’s not working and you have a breakthrough.

I questioned if I am “allowed” one PCR test at the end of treatment then I should be able to wait until at least 12 weeks following end of treatment to have the test to see if there is a possibility that the virus is back. She went on the defence mode and indicated that it was procedure and protocol of the clinic to do an end of treatment PCR. She told me to “stop reading and she is the trained professional and I should let her do her job and I should be the patient” in so many words.

I asked if the PCR test has to go on a different piece of paper and she said...”I’ll escort you down to the blood lab and watch you get it done.” LOL I have her running and I am the “fly in the ointment” for her. I think it’s so stupid to worry about whether I am undetectable at the end of treatment when they can check me twelve weeks later to see if I am still undetectable. I know it’s for the clinic’s own records. However, their treatment is flawed because they give no check for the hapless soul who has had a breakthrough during treatment, but they refuse to check it until the end. Going 4 weeks to 24 weeks is a stretch, but leaving someone 24 weeks to 72 weeks is just too stupid for the sake of cost. Forget the stress on the patient’s body being left on treatment so long.

I’ll post this on the forum for input regarding my conflict with nurse.

#58

2008-10-26T09:19:00.000-03:00

The week following my 58th injection was another week of exhaustion, suffocation and isolation. Day in and day out I sit here. I go for my walks around the house and walk from room to room trying to get some exercise. I don’t walk far, but I walk. I have been getting constant joint and muscle pain from the treatment so I want to keep moving so I don’t seize up with pain.

The rash is back with a vengeance and I look like I’m scalded. My chest, stomach and back seems to be the worst. It seems to be staying away from my face, however, I get occasional flare ups and people do ask me about it.

The medical profession adheres to the fact that there is no such thing as liver pain is really ticking me off. My nurse practitioner looks at me with confusion every time I complain of this symptom. She wants to get my lungs checked every time I mention it and even though it was all checked out the first time I mentioned it, she still insists to do the lung check. I don’t bother mentioning it anymore.

OK, I’ll reword it ...It’s an ache that is constant and dull in the liver area and sometimes it can hit with a jolt that can almost put me to my knees. It doesn’t put me to my knees, but I usually give a yelp because it is sharp and hurts like hell.

Weeks 53, 54, 55, 56, 57

2008-10-13T18:52:00.001-03:00

Several weeks have gone by since I posted here. My laptop hard drive crashed and it took me ages to receive my new laptop that I ordered online. I have been diligently working on setting it up.
It was odd that my computer chose to die when the week of my 53 injection. My 53rd year. I hope that’s a good sign and tells me that I have eliminated the active virus with my determination. Hey! I can dream, can’t I?
My 53rd year is one hell of a year. It’s comparable to my 52nd year, but worse. I am treating with rat poison and insecticide for 365 days during my 53rd year of life...and then some. I started this treatment in my 52nd (September 21, 2007) year and will end it in my 54 th year (February 2009) as I have been damned with the 72 week “tour of duty”.
It‘s a real test of endurance. It’s a test of endurance for my husband. Food is a huge issue for me because I cannot make meals and I am unable to stomach take out or grocery store delicatessen food . We had a huge intense discussion tonight about it and I truly do not know how I am going to get through to the end as food sucks, but I have to eat the food to take the riba. I won’t tell anyone that I am on chemo except my immediate family. They are unable to help or don’t realize it’s a huge problem. It’s a catch 22. My husband cannot cook or do for himself unless it’s ripping off the top of a chip bag, chocolate bar wrapper or lifting the top of an ice cream container. I am so sick of junk, takeaway food, purchased food that I could puke, but I won’t! I have to keep the ribas down.
Injection 55 was a dud. My redi-pen failed to mix and the next pen in the same box gave me grief, too. I managed to get it to work.
I was born July 1955 and I just found out in the last couple of years I was a surprise baby. I was shocked. “Mom, say it isn’t so...” However, once I thought about it I reasoned that there are five years between my brother and me so I expect I was a surprise. I never really thought about being a surprise baby until Mom spilled the beans. LOL

My 52, 53, 54 injections were very hard weeks to get through on tx. I was wiped. I could hardly function or breathe. Following injection 55, I had two “better” weeks. Injection 57 was last night and I can feel that suffocation creeping up on me. The injections don’t cause the suffocation, it would be the ribas, but for some reason some weeks are extremely bad and others are “worse than bad.”

Injection 52

2008-09-08T19:27:00.003-03:00

Sunday, September 7, 2008, I injected my 52nd shot of interferon. My 52nd year was a huge challenge. I thought 2004 was the year from hell, but 2007 really kicked the shit out of 2004. I had my blood drawn on December 4, 2006 for a life insurance policy after years of refusing to buy one. My husband bought them for 30 years of marriage and every once in a while the insurance broker and husband would try to talk me into getting a policy. I fought it until we bought our new home and the bank wouldn’t insure our loan because we were “of an age”. I was brow beaten into applying for it. Now, I realize it may prolong my life.

My doc called me on December 18th at work to tell me that the insurance company contacted him that I tested positive for Hep C. I was gob smacked. He wanted to check all my hospital records to see if I had a blood transfusion. I was reeling from this diagnosis. I immediately went to get the anti-body test done again along with the confirming test to determine if I actually had the virus in my blood. It took from December 18, 2006 to January 27, 2007, to get the results back from my second confirming test. I was livid that I was left so long waiting for the results. It was pure agony waiting to see if I were one of the damned, but I was disbelieving that it couldn’t even be possible. I was did not live what the doc called a “high risk” lifestyle. Doc checked my records at the hospital and, of course, I had no record of blood transfusions from all my surgeries I had over the years. I had many surgeries and medical procedures done over the years.

“Did you ever inject drugs, Rose? You know that you only had to do it once.” I was sitting in his office in total shock not even really understanding what he was implying. It was my first smack with the “stigma” attached to hep C. I lived in Smallville all my life. I did not use drugs. I didn’t know anyone that used intravenous drugs! It was just not my lifestyle and I do not judge those who do have that lifestyle. I have my own skeletons in my closet and I’m far from perfect, however, my lifestyle did not involve injecting intravenous drugs.

I don’t think I’ll ever recover from the instant feeling of being a pariah from society. I was given the immediate flick by the insurance company. Insurance provider was confused to why they wouldn’t give me the insurance because he has known me since I was a child and I was a healthy person. I was the picture of health for a 52 year old. I was long distance running and I was in excellent shape. I was on top of my game.

I was also pestered by the bone marrow donation registry wondering why I wanted to remove my name from their list. “We like to know the reasons for people taking their names off the list…it is private and no one will have access to the info” I was still shell shocked with the diagnosis and I reluctantly told her I was diagnosed with Hep C and she shut down on me as if I told her to “go to hell”. She was curt and abrupt and indicated that it was one of the reasons for not being an acceptable candidate for being a bone marrow donor (DUH! Like I didn’t realize that????)…thank you very much…and I received a “PFO” (Please F*ck Off) letter from the bone marrow registry, too. I just notified the bone marrow registry out of courtesy because I happened to get an “update your info” letter from them at the time. Now, I know that I should have not bothered as the odds wouldn’t be very good for me to match with anyone. I would have dealt with that dilemma if it had of happened and the odds just weren’t there. Hep C took that option away from me, too. I cannot donate bone marrow to anyone.

I was jerked around by the department of health and I was led to believe that I had to call them because they were looking for me and I had to be registered with them. I found out later that I didn’t even have to call them and talk to them. I wouldn’t have if I had of known that then as I thought I was obligated by law. It was interesting that the health dept nurse was more interested in my life style habits and once I indicated that I had pierced ears done years ago and she accepted that as point of transmission. Not the fact that I grew up in the 50’s, 60’s,70’s and 80’s and was exposed to every manner of blood letting through medical and dental surgery, inoculations, etc.

I knew that the Department of Health was grasping for reasons and justifying that it was something I did to myself. I had my ears pierced, therefore, that's where I picked up Hep C.

My self-diagnosis is that I am so bitter that I do not know where I acquired the virus or when along with the fact that most of medical community have their heads up their arses regarding Hep C.

I had no one to turn to, no one I could trust for support other than my immediate family. I was a lost soul. I can still be lost with Hep C because it’s such a lonely diagnosis. For survival in a small community I have chosen to keep it secret at this time.

Injection 51

2008-09-07T17:45:00.000-03:00

Injection 51 last Sunday night, August 31, and I’m currently working on week 51 pills.

At 51 years of age I moved from a home I lived in for decades. However, the week I was supposed to move I was dinged with a major breast biopsy which turned out OK. Phew! I dodged that bullet, however, I had to keep that secret because I didn’t want my Mom to find out that I had to have that done. I got through that along with the rellies from hell turning up at the house within a few weeks of my operation and moving and deciding that they would stay with me for three weeks instead of going to their designated place they were supposed to stay…because it was so nice and they wanted to stay in our new home. They already lined up a place prior to arriving at my home. I was not prepared for anyone to stay in my new home within two weeks of moving in. My other local rellies were horrified and kept trying to get the “guests’ to stay with them, but, they would not. I was a wreck. I was unable to move in properly as I was forced to entertain and accommodate two people who needed their own beds. I did not have any extra beds so they slept on my couches (…that is death to any couch). I was a wreck from just having breast surgery (where you are NOT allowed to do anything that involves using your arms to even lift a book) .

IThen I got dinged with the Hep C diagnosis when my husband and insurance provider finally brow beat me into having a life insurance policy because I was no longer a young thing and the bank wouldn’t provide it on our mortgage. The first Hep C test came back positive on December 18, 2006 and my Smallville doctor was notified. He was doubtful that I had it. “Must be a false positive, Rose!” Well, the rest is history and I was discriminated against horrendously. I got the immediate rejection notice and my down payment returned the week before Christmas. Here I was going along with my life in Smallville and now I was being treated as an outcast.

My 51 year just kept getting better and better with angst. The health care system was shitty because I had to wait forever to be seen following a diagnoses with a chronic illness. I waited months to get the second Hep C test results. Then I waited months to get treatment which I had to fight viciously to try and the only reason I was “allowed” to treat is because I had a health care plan.

Bring it on! I’ll not back down.

50th Birthday - Tiara

2008-08-26T12:46:00.002-03:00

My Mickey Mouse attempt at cropping and posting pictures. LOL

The infamous 50th birthday crawled up on me in 2005. My best friend sent me a tiara for my 50th birthday. I said I always wanted one and we had a great hoot trying it on, prancing around taking photos. It is a pretty ridiculous thing for a 50 year old woman to want for a whimsy. I think I’ll wear it for my 72nd injection.

50 injections done. I feel like crap and look just as bad. I sent a photo to my pal and the word she used to describe her husband’s reaction to my photo was “aghast”. I have been sending her photos of me, but that's the first time he had seen a pic of me in months. I do look terrible. I have been struggling with weight loss again. I expect the hair to take another round. Sides are still the same old exhaustion, brain fog, suffocation but major digestive problems have hit me with a vengeance since week 47.

49 - Melanoma

2008-08-20T08:33:00.001-03:00

Kitty with heating pad

2004 was the year I turned 49 and it was one hell of a year. I went through a personal emotional crisis (not willing to discuss here) early in the year and at the same time I was diagnosed with melanoma on my right upper thigh by the summer. Both situations knocked me on my ass. I was no longer in control of my personal life and now the melanoma scared the crap out of me.

I noticed that the spot on my leg had started to change and when I visited my dermatologist in May of that year I had to insist that he remove it and check it. Well, I didn’t find out it was melanoma until August of that year because of our backed up health care system. Welcome to Canada!

They took a larger chunk out of my leg about the size of an egg and it came back all clear. I was very lucky and now I go to my dermatologist every six months for a complete skin check.

It set me back terribly being diagnosed with melanoma and now that this Hep C diagnosis has been handed to me I’m in the “frig it” mode. I’m never looking back after my treatment and I’m going to lather up with the sun screen and go swim in the ocean as much as possible for the rest of my life. I might go south and I cannot live the rest of my life afraid of the sun. I will be sensible, but not afraid.

I managed to get melanoma (I was not a sun worshipper and it’s not in my family) and hep C living my own little cloistered life in Smallville. It is time to say…”frig it”!

48 Weeks + 24 More

2008-08-14T18:59:00.000-03:00

This week started out pretty good following my 48th injection on Sunday night. I felt good enough to push myself to my limit and by today I hit a brick wall. I am suffocating again and I should have known better not to overdo it.

24 weeks of injections left.

47 - Trip to Oz and Mom Remarries

2008-08-06T08:08:00.000-03:00

My 47th year was a busy year. To top it all off I went to Australia in the early spring of 2002 to visit my pal. I was there in ’95, also and managed to see the Great Barrier Reef, Fraser Island, Surfer’s Paradise, etc. The country is so huge and unique. In 2002 I went to a resort in Mooloolaba, a resort in the MacPherson Mountain range (where I encountered not one, but two snakes on a hike (I was lucky to have clean drawers when I got back to the resort), Glass House Mountains…Sunshine Coast. I think it was the last time I had a side splitting howl with laughter while swimming at a resort in Mooloolaba. The Atlantic Ocean is so blistering cold to swim and the resort was just like bath water with waves that tossed me around like a bubble. I had my bum chaffed on the sand from getting tossed around in the water and I had a great hoot over it.

My Mom married her sweetheart in October and they moved here to Smallville. They are so happy and my step-father never takes the smile off his face. He said it took him 60 years to get her.

I am pushing on through this tx and lately I have been worried about how my mega time-off I have been taking may make my employer investigate why I’m taking so much time off. I am not on their medical plan and I do have many accumulated sick days, but I will run out by March 2009. I don’t think they can investigate the true reason because I am not on their health plan and as long as my doc writes me the script notes for being off work.

It stresses me to get my GP doc to write time-off notes for me monthly, but I don’t want to give my employer a time when I shall return to work. 72 week tour of duty sure put a kink in my 48 week plan and I know that it will be months to get some of my health back once I complete this in February 2009.

This is a prime example that nothing in life goes to plan. I shall not go back to work until I am feeling well enough to handle it and my nurse practitioner wants me off until August 2009. I wasn’t willing to do this at first, but as I get into the 47th week of tx I know I’m going to need the time off to recover from the treatment. I am making arrangements to stay off work until that time as I am pretty sure I will be useless to my employer until then. I want my brain back and I need it to do my job.

I am also getting concerned if I’ll have long-term hazards from taking the interferon and riba for such a long time. Will I ever feel well, again?

I attended a wedding last week and the photographer took pictures of all the guests in attendance. She took one of me up close and when I saw the picture I saw a person that was a shell of my former self. My eyes were empty, hollow, blank and sick looking. It wasn’t really me.

46- My Mom's Love Story

2008-07-31T19:41:00.002-03:00

When I was 46 years old my Mom received a phone call from a long lost love who was living in another province. He hunted her down and managed to get her phone number by calling people in Smallville with the same last name until he managed to call my cousin who exclaimed …”Aunt Vivian? I have her number right here.” …And he gave the elderly gentleman Mom’s number. He told my mom…”I thought about you from time to time over the years, Vivian, now I find that I’m thinking about you all the time.”

The year was 1943 and he was dating my mother and he went in the armed services. They parted and the next year my mom also joined the armed services. She was sent out west and when she was in training she stopped over in downtown Toronto and they happened to see each other from across the street and they waved, but they had to go with their colleagues.

Life went on. Mom married and had her family and he did the same. My mom was single when he called and he had lost his wife a couple of years before. Ironically, one of his girls has the same name as my sister and his other girl was born on February 14, same birthday as Mom.

Of course, I was shocked and suspicious of his intentions. I am the baby of the family and I was steadfast regarding his motives. LOL

I met him and love him dearly. I immediately put my suspicions to rest.

He adores my mother. Absolutely, adores her.

My 46th injection was last Sunday night and I have had such a busy week with rellies around I didn’t realize that I didn’t post. Usual sides, but the newest one is joint pain. I did mention it to my nurse practitioner and she indicated that the treatment would affect all joints equally. It would be an all over ache. Well, it has, but I get some joints that ache more than others and my left hip has been so sore the last couple of days I have been keeping a heating pad on it. Of course, my right side ache around the liver area and underneath the shoulder (which she tells me has nothing to do with Hep C or my treatment) has nagged me prior to tx and all through it. I don’t know why I bother discussing stuff with the nurse practitioner.

This treatment is brutal.

45 - Trip to New Orleans

2008-07-24T09:06:00.000-03:00

Turning 45 in the year 2000 my husband and I celebrated the new millennium and traveled to New Orleans and met friends from another country for a week of fun.

It’s interesting that Patsy brought up on the forum the topic of a “bucket list” of all the things you want to do if you knew that you were going to die. (Morbid subject, I know). However, I guess I always had a “bucket list”, but I considered them my goals. (short term and long term) One of my goals was to go to New Orleans and I did it at 45 years of age. It was a great experience and I loved the “old south” uniqueness about it.

We went up the Mississippi River in an old steam boat and viewed the levees built to keep the river from flooding the old plantations. They were extremely high. We also tried a Mint Julep which was too strong for me so I nixed it…someone else drank it willingly LOL. We also did a Jazz night on the steamboat during a major vicious thunder and lightening storm. We visited old plantations and they were beautiful. The French Quarter and Bourbon Street were very different and I am glad to have experienced it. I do remember many of the tour guides indicating that New Orleans was built on top of the water and the city was build on a bowl like terrain. They would indicate that if the levees ever broke it would fill like a bowl. Little did we know that five years later hurricane Katrina would hit New Orleans and cause such devastation when it pushed through a weakened levee and filled the city up with water like a bowl.

I am struggling with nausea these days. I’m eating fat with my foods, but where I’m lacking is in the interest of eating. I know I have to eat because I have to take the pills. The choice of food here is not good and my husband has to rely on “take out” restaurant food because I cannot cook anymore. I can hardly stomach restaurant food and yearn for meat and potatoes and home cooking. The brain fog is frustrating along with the fact that I am so fatigued I cannot do a thing. I am very resentful that I have to depend on my husband for everything. The poor bugger. He’s having trouble handling it along with working full time. I do what I can when I can, but I see it all deteriorating around me everyday.

The sad part is that not many people know what’s really wrong with me or how sick I really am on this chemo. I have been brushing them off when I ask and tell them that I am treating for an autoimmune problem and that the medicine is knocking me off my feet.

It’s a believable story, however, the ones who do know or know that I am in this shape (and there are only a handful of family) are unable to help me with my food. I was the youngest and healthiest to do that sort of thing and I toppled on them. The meals used to be a big thing in my home and even though no one expects me to do it now … I am not getting any invites out for meals. I would kill for someone to invite me out for a meal made by them, BUT when they do ask they want to go to a restaurant and I have to force a simple soup or chowder down to get through the meal.

My mom has come and made some meals and she knows that something is desperately wrong with me. She keeps asking to come back to make more, but she’s so exhausted herself in her advanced years. I am so lucky to still have my Mom.

Chop Chop ... Off with More Hair

2008-07-14T10:48:00.003-03:00

This is an Ivory Silk Tree and I shall have one of these in my garden someday soon.

My hair is the shortest it has ever been since I was 11 years old. I had it cut very short last Thursday. It is a huge improvement over the dry wispy sprigs and it is starting to look much better. I think the “fall out” zone has passed and I do believe that I see some spiky bits popping out along the top. I have many weeks to go to reach the 72 weeks. I wonder if it’s normal for it to start growing back in the middle of treatment.

I overdid it on Saturday night so I paid for it on my birthday on Sunday. I should know better, but I was out with friends I hadn’t seen since September and I didn’t want the night to end. Of course, I didn’t get to bed until 11:30 Saturday night and I “paid paid paid” for it on Sunday. Also, a lady that is helping me with landscaping the property came on Sunday and I spent a long time with her and it was mostly outside. I had lathered on the sunscreen along with wearing a 50 sun block hat and I never even had a singe from being in the sun a long time. Of course, I stood under every tree and picked every shaded spot to conduct my conversations with her regarding each area.

She has the same vision as me and I was just too brain fogged to do it myself at this house. However, after my sickening day yesterday along with my 44th injection last night I feel as if I have something to look forward to in the short term. I can have these landscaping plans to investigate for the rest of the summer and throughout winter regarding the various shrubs and flowers to plant. My husband is preparing the landscaping beds for some fall planting.

The previous owners planted “mish mash” perennials from other people’s gardens and let the weeds take over. It was heart breaking that it was let go as I know if people have grandiose plans and don’t do the upkeep the curb appeal of your home plummets.

The landscaper suggested that in some areas we cover it with tar paper and cover with mulch to see if it will kill it off. I don’t want to get into chemicals, but this property is so far gone I might not have a choice. It would only be one small area as the weeds are noxious there and nothing will get rid of them. The weeds are not the same as the rest and it is assumed that the previous owners had them brought in with top soil. That happens, but you have to be vigilant to pull them out. I don’t want the Canadian thistle. That’s one nasty pain to kill. (if you can!)

Must be something like the virus!

It's My Party and I'll Cry if I want to...

2008-07-13T19:34:00.001-03:00

Today I celebrated my 53 birthday. What a ride this last year has been for me. I celebrate it by injecting my 44th shot tonight.

Working on Week 43

2008-07-08T11:57:00.001-03:00

Sunday’s injection 43 knocked me on my bum. I probably struggled because I had a dentist appointment at 8:00 a.m. on the day following the injection and was up and out the door at 7:30 a.m. that morning. He decided not to clean my teeth until I am completed my tx because my bloods are so suppressed. I wasn’t looking forward to having my teeth ravished by the hygienist. She is rough and I know it would have been a blood fest with the low platelets along with the possibility of infection with the low WBC, etc. Also, the pain afterwards would have turned me off eating and I cannot have that happen.

I won’t have any trouble with no cleaning for a long while because I am a dedicated tooth brusher and “flosser”. (Sad, eh? LOL) The receptionist booked me for the first week of March and if I make it through tx I should be four weeks into detoxing by then. However, if I don’t feel well I will postpone it to a later date, but not anymore than a couple of months.

My Mom came on Monday afternoon and we cooked a lovely fresh chicken. She did most of it, but it still exhausted me. I nearly inhaled the meal I was so starved for home cooking. I overdid it that day and I was very ill Monday night with sick headache and seedy Tuesday with feeling ill and a manageable head throb. I’ve only had four of these nauseating “head bangers” since starting tx so I consider myself very lucky.

My new sides:
I am having some trouble with dry mouth and sensitivity to hot spicy foods. I am getting a slight odd taste that I cannot identify and it has put me off some of my favorite foods. I did notice that I dropped some weight, not much because I force the food into me.

My left hip, left knee and wrists are getting stabbing aching pain. My left hip is my worst problem and it bothered me prior to tx, but lately it’s been giving me attitude. I had it so bad one day last week I limped around. It’s tender. I took an ache in my wrist last night when I had a houseful of people and I yelped. They looked at me as if I had two heads. My arthritis acting up, I tell them. LOL

The constant ache on my right side is ever present and once tx is completed the nurse practitioner said she would have the clinic run tests on my gallbladder. I did have tests done at the local hospital and the results were that my gallbladder is working within 74% capacity. She nearly came through the phone when I told her that a month ago. My nurse practitioner didn’t get copies of this test and when I mentioned the constant left side pain, again, and the fact that my test indicated those results in May of 2007 she was shocked. I’ll take a copy of the results to her next appointment.

It’s strange that I would have “the non existent liver pain” (I say that in jest) because I had no liver damage and very mild inflammation when I had my biopsy prior to tx.

It’s nothing I cannot handle. “Bring it on!”

Injection 42

2008-07-06T14:27:00.000-03:00

This was a much better week following injection 42. The feeling of suffocating was more than usual the last three weeks, but it seems that it has passed or my body has adjusted to the lower hemoglobin. I’ll be curious to see if my bloods dropped because I am really noticing that I have more exhaustion. The fatigue level is very noticeable as I cannot lift my arms to do anything and just wiping off the kitchen counter is a major deal. I ironed a pair of pants and t-shirt and had to lie down twice while I was doing it as it was so exhausting. My iron feels like I’m pushing around a 30 pound block. If I go shopping I cannot lift or pull items out of a bin nor can I look through hangers of clothes. I can walk around view the stuff and my husband has to do the searching for the items for me. I have to be able to sit down or I go out to the vehicle to sit when the fatigue level is unbearable.

2008-06-24T06:29:00.000-03:00

Injection 41 on Sunday night was uneventful. Just the “same old same old” usual sides counteracted by Tylenol. However, I was down for the count most of the last three weeks with more exhaustion and Thursday, Friday, Saturday I was functioning with it, but Sunday I could hardly breathe because it was very hot and stuffy.

I am worried regarding the fact that I have to try to make it through 31 more weeks of this treatment and the protocol where I live is very rigorous.

I did absolutely nothing yesterday (Monday) and I intend to do very little this week to see if I can have an OK day by the end of the week before my next injection. My husband gets so disappointed when I don’t have the energy to go and do anything as he’s bored with our life right now. Also, because we are eating high fat take-out meals he has probably gained 20 lbs.

It was rough prior to this and just when I thought it couldn’t get any worse, it did.

Injection 40

2008-06-16T19:19:00.001-03:00

I actually celebrated my 40th birthday twice. I was in Australia in 1995 and I celebrated my 40th birthday in Sydney. Boarded a plane to travel back home with a stopover in Hawaii. Once I traveled over the International Date Line I was celebrating my 40th birthday all over again and I topped off my night in a bar in Hawaii listening to an excellent blues guitar player. I was exhausted and thinking the birthday I was trying to avoid would never end.

I’m really getting hit hard following the injections the last couple of weeks and today it’s looking like I shall be in for another low week. It knocked the good out off me prior to this, but for some reason I just think I’m a bit worse and I’m not used to feeling this sick, yet. Pathetic isn’t it? Getting used to feeling sicker, but that’s how this treatment works. Just when you think you have leveled off in feeling sick all the time, tx always comes up with making you feel worse.

I thought I’d clean my bathroom mirrors this morning and I was huffing and puffing when I was finished. It wiped me out!

I’ll go for my June blood tests at the end of the week as I want the results in time for my appointment during the first week of July.

I have 32 weeks to go.

#39

2008-06-10T20:40:00.001-03:00

I trudged up the stairs on Sunday evening to inject my 39th shot. I felt terrible all last week with no OK days towards the end and it was daunting to inject that interferon knowing that I was going to feel like hell. I read many times that some people on tx do reach a point where they are so sick that they hesitate to inject. I hesitated, but I overcame it and jammed it in to finish the job. TerryLee8 told me there would be OK weeks and really bad weeks so I live for the OK weeks.

I spent the week physically exhausted and even wiping off the kitchen counter, folding sheets, pulling the wet clothes out of the washer were an extreme effort. I was in bed every afternoon so I had to rely on the sleeping pills at night. After the big upset several weeks ago with the NP and my bloods dropping so low I figured I had better take the sleeping pills to get some sleep. I wasn’t too bad for sleeping; however, the NP indicated that my bloods might improve if I get lots of sleep. I jumped on that option train because I don’t want to reduce the riba.

My regular doc wouldn’t fill my sleeping pill script after the NP read me the riot act and I started taking them regularly. That set me off with frustration. I called my doc again this morning and explained to the receptionist that it has been recommended by the clinic that I take these sleeping pills. He called the script into the chemist. I shake my head here with frustration. The medical system is trying to continually cut me off at the knees and I won’t back down.

38 and Holding

2008-06-06T09:01:00.001-03:00

I’m working on week 38 now and it really set me on my behind. Last week I seemed to have more energy and I seem to be paying for my busyness this week. I was on my back in bed both Monday and Tuesday this week following my 38th injection on Sunday night.

NP called on Monday morning to see if I have been sleeping better. I asked her about my May hemoglobin and she indicated that it was 9.3…My heart went to my stomach as I thought she was going to take me off one riba a day. She told me that my hemoglobin fluctuated throughout tx and it was still OK. I agreed. LOL

It NEVER fluctuated that low. Crap. I want to make it to the 72 weeks on full meds. I know that the hemoglobin should be low, but I get no reprieve with rescue drugs if I drop too low and they will reduce the riba.

I want to tear everyone in the house a new asshole. I have to keep myself in check, but my reasons are valid and it’s not riba rage. If I weren’t on tx I’d let them have it.

Living with three men and two of the younger ones are absolute dirt pigs. I can handle clutter (to a degree), but I cannot handle dirt and crud. Therefore, I am going to call up a maid service today to see if I can hire someone to come in once a week to clean their mess (bathrooms & bedrooms and major floor slops throughout the house that they are responsible for doing) and they are going to pay for it.

They aren’t listening, but their wallets will listen.

# 37

2008-05-29T11:36:00.001-03:00

Week 37 is uneventful regard in tx. (the same old same old, fatigue, brain fog, weakness, spinney feeling and unsteadiness. feeling like crap, itchy skin, dim vision, dry eyes, eyelids drying out and itchy as hell, hip and wrist joints starting to mildly ache, tinnitus, sucking for air whenever I climb the stairs or try to do housework as I have the feeling of a brick setting on my chest all the time). I had sides, but at least I could get a few things done each day. I overdid it on Tuesday trying to clean up hair that my young fella and his friends left all over the house after they decided to “buzz” off all their hair in the bathroom when my husband and I were away for part of a day. Along with the fact that they had a drinking party at the same time the drinks were spilled all over the tables and the kitchen counter was cluttered with dirty dishes. Kitty knocked over a drink and walked it all through the house.

I was livid and the mess it created for me was horrendous. Needless to say, the clippers have now been thrown out and will never return to this house. He did this before a while back and he was asked NEVER to do it again. Therefore, the clippers are now history. I have to keep myself in check over it all because I am furious and exhausted. I had a full day of vacuuming the dryer and the washing area every load of laundry that was done. The hair went everywhere in the house and it’s a losing battle. YUCK!

I would be frothing furious if I weren’t on tx, but I have to toe the line or my NP will have me committed and tied to a hospital bed if I create any conflict in my household. I’ll tell you I could tear nails out of the walls with my teeth I am so pissed and I am VERY sure I would react the same way if I weren’t on tx.

I have decided over the last couple of days that I am ready for my kids to move out and only come back to visit. LOL

Half-Way There Shot 36

2008-05-20T08:34:00.001-03:00

I injected my 36th needle of interferon on Sunday, May 18, 2008. I have reached the half-way point of this “long drawn out life altering” treatment.

It’s daunting from this point to know what is left to be done. It’s going to take a lot of work and I’m determined.

The conflict with the nurse practitioner last week was stressful for me and I spent the days since combating the rash itch. I had it under control and then it went whacky on me again. I expect it was the extra stress resulting from the confrontation and me refusing increasing my anti-d’s along with going full on with major addictive sleeping tabs. I do not need the sleeping tabs every night, yet, and I sure as heck do not need to increase my anti-d’s.

Stopping work has been very beneficial to me and I’m unable to go back for a long while as if everything works out for me I’ll continue to do whatever it takes to remain on this treatment.

I remember discovering my mother was 36 years of age.

My husband always teases me about the trivial stuff I remember and that’s why this brain fog on treatment is so devastating. It hasn’t seemed to hurt my long-term memory at this time so I can imagine that this is what Alzheimer’s symptoms would mimic.

Anyhow, realizing that my Mom was old…lol…that would have been 1962 and I would have been seven years old. It’s odd that I would remember that, but it was the first time that I became conscious that my mother had an age. Over the years I realized that when all my friends would tell me how young my Mom looks I knew it was true. My mom is still a striking looking woman at 81 years of age. Recently, a good friend of mine described my Mom as “pretty”. Imagine, 81 years of age and being described as pretty. Of course, I agree.

My Mom has a love story.

NP Flips Out-35th shot

2008-05-15T16:10:00.001-03:00

The 35th year of my life was a busy one with two small children, working full-time and preparing for a court case where I was subpoenaed as a witness for the crown. I learned a bitter lesson that year and the lesson was that when the thief rat was abandoning the sinking ship he and his lawyer tried to paint everyone in the office who handled finances with the same brush. We were all thieves. He was innocent.

I thankful that it was my accounting practices that protected me. However, being in a small community the rumours and “rumours of rumours” were flying and the accusing fingers were pointing everywhere.

We had our days in court and he was guilty as charged.

I backed up my shot to Monday night this week and even waited until a later time around 9 p.m. to do the injection. I felt OK these days and managed to get to a clinic appointment by Wednesday that went very wrong in a bad way.

I told the NP a little story about a riba rant I had one day last week and the conversation took a very bizarre turn with her insisting that I increase my anti-d’s and take sleeping pills every night. She took a simple little story I relayed and insisted that I was a tyrant at home and my family was suffering and I would never make it through tx and I’ll end up divorced. (This is the condensed version of her words.)

Good Grief!

I outright refused to increase the meds only to have her come back with “I’ll take you off tx!” She insisted that I was refusing to follow her directions and that she would be contacting my regular doctor.

She called this morning an apologized.

Getting through the hoops of fire because of our shitty health care system is hard enough along with the sides of tx, however, this constant feeling that the “I’m taking you off tx” axe is going to fall is too hard.

34th shot - Backing Up

2008-05-10T07:03:00.001-03:00

My 34 year was a year of recovery. I had just gone through two very hard pregnancies in a row and along with that there was a problem at work with funds missing. I sensed there was something very wrong because I was doing the accounting and I couldn’t get those in charge to listen to my facts. The math did not work. However, I did find someone to listen and I asked him to take the books home. The next day he called me into his office and shut the door and said…”We have a problem!” He stayed up the whole night going through my records and came to the same conclusion I had. It set my 34th year off with upset and stress as it resulted in one of the bosses being charged with theft.

I took up walking and lost 18 lbs of baby fat, however, by the spring of that year I came down with a nasty bout of shingles. Here I was a 34 year old woman and I was so rundown I succumbed to shingles. I have had lots of surgeries and pain in my life and even to this day I have to admit that was the worst excruciating pain I ever experienced. I can only wonder how an elderly person handles it when they get it and the nerve pain hangs on forever following the attack. Now there is a medicine you can take to help counteract the severity of the attack, but the biggest problem was getting a doctor to diagnose it. I saw three different doctors over a period of time when it was in the active stage and, finally, one of them took a look at it and diagnosed it as shingles. I just had to tough it out. I think that I could liken it to someone putting a blow torch to your skin and no painkiller would help.

Injection 34 backed up to a Tuesday night. I was feeling so miserable that I was worried that I was probably doing it too quickly, however, I leveled out this week and seem to be getting some better days, therefore, I’ll push on and take my next shot Monday night.

Photos of the Maritimes

2008-05-07T16:28:00.014-03:00

Newfoundland, Gros Monde

I expect this was taken during the month of July in Newfoundland (NOT KIDDING)

Prince Edward Island, Cavendish Beach

I had a photo of Anne of Green Gable's house and cannot find it.

Cavendish Beach, Prince Edward Island

Nova Scotia, Cape Breton Highlands

(There would be moose in "them thar" hills.)

Peggy's Cove

Off the coast of Peggy's Cove was the site of the crash of Swiss Air 111 in September 1998.

This photo shows the fury of the Atlantic

New Brunswick

Whale Watching, The Bay of Fundy

Tidal Bore

The Bay of Fundy

Fell Down The Stairs

2008-05-05T15:19:00.000-03:00

I took one heist down the stairs this morning on my backside. My bottom looks like a map of the world from outer space. It’s all colours of blue. I slipped as I tried to walk around my husband going downstairs with my morning coffee.

The heating pad is my new best friend. I cannot even show the bruise to anyone!

Shot-33 Backing Up Another Day

2008-05-04T17:54:00.002-03:00

My second boy was born in May 1988. I was 33 years old and it was another hard pregnancy because I kept going into premature labour for this boy, too. Unfortunately, for this pregnancy we lost all our local baby docs and the closest specialist was in the city. When I went into premature labour I was sent there for two weeks. They stopped labour many times and then it settled down enough to send me home. I went into labour here in Smallville again and my doc managed to get it stopped several times in the remaining weeks. He dragged me to magic number of weeks and let me go into labour. I was exhausted with two hard pregnancies in a row. However, it was a wonderful day when my younger boy was born. I couldn’t believe it that I only had a 30% chance of conceiving one and now I had two beautiful babies within 14 months of each other.

I believe in miracles. I thought I received my one miracle in my life when my first boy was born and now I had two miracles.

This boy is also 6’ 5” with hazel eyes. He’s the athlete of the family, however, struggles with dyslexia. He struggled through school and now works in advertising. I am so proud of him.

I went out and bought the kitty repellent and sprayed it around the bottoms of the window screens. I am only trying a few key areas right now and as it gets warmer I’ll have to go around and spray them everyday and discipline her if she tries to climb up them. However, she HATES the smell of the stuff and gives a wide walk around it so I am hopeful.

I did my 33rd injection on last Wednesday and this backing up shots to get to Sunday night is kicking the crap out of me. My husband wants me to settle out for a couple of weeks on Wednesday night injections, but I’m determined to get it done and not prolong the agony. I may as well bite the bullet and get the shots to the night that I want them. I noticed I have lost many “good” days by pushing back my shot night.

My next shot is Tuesday night coming up and I know it’s going to kick me back again. I could hardly get around last Saturday when I went shopping in Smallville. I had to go out to the car and sit down as I became so sick and exhausted. I have to push it back so I can have some sort of life as my weekends were a write off.

Shot 32-Backing Up

2008-04-27T18:08:00.005-03:00

This is Frankie my Burmese

My first boy was born in 1987. I was 32 years old and it was hard pregnancy because I kept going into premature labour. However, it was a wonderful day when he was born. I couldn’t believe it and, of course, it set my life on a different route. I was now a mother. It was something I didn’t think would ever happen and it did.

I believe in miracles. I thought I received my one miracle in my life. However, little did I know that I would be a mom again very soon as I found out I was pregnant again within six months following his birth.

He grew up absolutely perfect (gushing mother here) and he’s my brown eyed handsome 6’ 5” man. He is the musician in the family and plays a mean bass.

This boy broke down on me a couple of nights ago and I should have known how badly this diagnosis and treatment has affected my family’s mental health. He is off to the doctor tomorrow as he might need someone to unload on instead of me. In this family I was the organizer, arranger, doer and always available to take on my children’s and husband’s problems and help them work it out. I’m not doing so good with all that thinking doing stuff now. However, they are not used to me being so exhausted and stupid (LOL) all the time. This tx has hit them hard, too.

This week I finished work. My older boy breaking down with overwhelming despair was the decision maker for me. I’m not going back until I am finished treatment and ready to handle my job. I was feeling useless there the last three weeks and I was dragging myself back for “this reason or that reason” only to find that it was a waste of my health and time. I was working on the days I could function and my family was missing out on their Mom… I was only manipulating treatment to get myself to work so I wouldn’t draw attention to myself by missing so much time. Those martyr days are done. Now I am going to work my injection back to either Sunday or Monday night (I’m leaning towards Monday right now) to give me more time with my family and friends on the weekends. They need me just as much as I need them and I want some normalcy in their lives and I can do that being home full-time for a long while. My mom is 81 years old and I have hardly seen her the last 32 weeks as I am sick all weekends when I used to do stuff with her. That will now stop. It took me a while to admit it, but it wasn’t worth my time to kill myself getting to work.

It’s hard to hide the sides from tx. One of my best friends called today and she is worried that I have something terminal. I assured her that it’s not cancer. As someone on the forum once indicated that most people don’t know about Hep C and wouldn’t know the treatment for it. I had one co-worker ask me straight out if I were on chemo. I answered “Sort of…” and left it at that. Any extensive treatment for many different aliments can be called chemo.

Miracle at 31

2008-04-19T06:11:00.002-03:00

By the time I reached 31 years of age I had many things I had to accept regarding my life and I made changes to improve it. Going back to college to complete my studies was a significant change. I endured two surgeries that reduced my chances of conceiving and along with being subjected to many investigative tests to determine if there were even a chance to conceive made me rethink my goals.

“You might have a 30% chance of having children, Rose.” The doc responded when I asked him. “Go home and live your life.”

So, I did.

By the summer of my 31 year I was expecting my first child. All the surgery, heinous treatment, heartache and perseverance paid off.

Last week’s shot really set me on my bottom. I was smacked down ill until Wednesday and couldn’t go to work for those three days. I did have an appointment with the NP on Wednesday, but I was dragging my butt getting there.

I discussed some problems I have been having and running a temperature on Saturday & Sunday and the extreme exhaustion the days following were the topics of discussion. She ordered blood tests, chest xrays (which I had done right then) and pushed to get me in to see an eye specialist. I am having very typical sides.

All I know that every week I stay on this treatment is a gift because things can change so drastically and very quickly and I can be hauled off it for the smallest reason.

With this treatment NOTHING is consistent. Things can go whacky in a hurry.

It’s an absolute miracle that anyone completes it.

30 shots down...

2008-04-14T08:28:00.004-03:00

When I turned 30 years of age I decided that I would buy myself a significant piece of jewelry. I was working full-time, completed my studies and made it to another decade and I wanted a reward. During a lunch hour one day I discovered a jewelry store with a going out of business sale. I picked out a cluster diamond ring that was all the rage then for ½ price. I wore that ring for a long while and eventually it was abandoned and put in the jewelry box. I enjoyed the ring and I still take it out from time to time and wear it. It is in dire need of repairs and I should have it fixed.

Turning 30 was the stepping stone into a decade of a total life-style change.

Well, I made it to my 30th injection. New side effects are extremely dry mouth, occasional wavy vision in the morning. The vision thing has happened several times to me in the last while and I think it’s from the bright sun so I have taken to wearing my sun glasses in my kitchen in the morning...

Well, that theory of wearing the sun glasses to ward off the morning sunrise didn’t work today. I have to totally avoid it as it sets my vision off into a blurry wavy mess. The bright lights in the bathroom in the morning set it off the first time. It passes within approximately 15-20 minutes. I think it’s a migraine percolating without the excruciating headache just a head buzz until I take a Tylenol (my new best friend.)

Following the 30th shot I did get a little lax taking Tylenol and ended up running temperatures both Saturday and Sunday evening. It was a new side for me.

Adding up finances for income tax…yippee!

Medical receipts for treatment since the end of September 2007 to December 31, 2007 have cost $ 920.00 with help from my drug plan. If I didn’t have a drug plan it would have cost $ 9200.00.

I usually never make the right choice when given decisions, but I am very thankful that a couple of years ago when I was given the option for the drug plan to pay 80% or 90% of our family drugs that I checked off 90%. I finally lucked out. It will pay off over the next year while I go for the 72 week tour of duty.

I have been taking days off work and I am feeling better on those days. I have a few more things to finish up there and I’ll have to pack it in and try to make the sides a bit more manageable. The chemo brain fog is brutal and I am unable to multi-task. I'm feeling useless there as so many things had changed and happened while I was away on a three month secondment. Furthermore, they changed my computer and I am wasting so much time searching for my old files I am of no use to them anymore while I am on chemo.

29th Shot

2008-04-07T19:40:00.001-03:00

After putting in a grueling year of returning to my studies I graduated in May of 1984. I was 29 years of age and eventually was hired by the company where I did “on the job work experience” training as part of my studies.

What a sense of accomplishment I felt when I walked across that stage to receive my diploma.

It took me until the fall of 1984 to earn status of full-time employee. Meanwhile, I was starting to feel unwell again with endometrioses and by the late fall I had to have another surgery for the same reason. I had to go off work for six weeks to have this surgery. Good Grief! A new employee, a new job and I have to take time off. However, the surgery was heartbreaking for me. My husband and I were married six years and the prospect of having children was dim. I was having so many problems and this second surgery didn’t have a great outcome. The surgeon had to remove one ovary, tube on one side along with a chunk out of my other ovary. Furthermore, he wanted me to take the steroid type drug that I had taken for a full year following the last surgery. I made it to six months with the meds and then I threw in the towel. I was war weary following two years of surgery and recovery. I just stopped taking the meds as the sides were not great, but I just lost hope.

Friday night I injected the 29th shot of interferon. Since that night I have read on the forum not to pre-clean the injection site with that alcohol rub, but clean it with antibacterial soap. My skin is in really bad shape around the stomach area and I had a light bulb moment when I realized that the irritation is probably from the alcohol. I thought it was from the actual injection, but it only stands to reason that alcohol is drying and irritation and I was slathering it on my stomach. I have to wear a latex glove to use the alcohol pads because they dry my fingers out terribly; therefore, it’s doing the same thing to my stomach.

Saturday I was down for the count with a headache, flu like (mild) symptoms and major fatigue. I wasn’t great the whole day. I went shopping with friends on Sunday afternoon and I was OK, but not great. I just pushed through it. They were commenting on how much better I looked and it was because I had taken Friday off work and it makes a difference in me when I’m not working.

I didn't go to work today (Monday) and I will be taking one day off a week for a while.

I’ll push it a little longer, however, my days are numbered at work.

The Summer I Turned 28

2008-03-30T19:50:00.003-03:00

The summer I turned 28 was a summer of change for me. I had just spent the year from hell recovering from surgery and steroid type drugs to counteract the symptoms of my girlie affliction. That was not fun. I was working in a “nowhere” sales clerking job, bored to death and hating every minute of it and paid nothing to boot.

I decided to return to college that fall and finish my program. It was a long hard year of being a full-time student and my poor husband managed to work himself into a stomach ulcer from the extra stress of being the sole breadwinner.

Well, I did it and it paid off 100 fold for us.

Shot 28 was completed on Friday evening and I am trying the injection pattern suggestion that came from the forum by treating the stomach injection area like the face of a clock. I am sorry that I didn’t heed that suggestion at first. It works and my frantic itching has been manageable since I’m not injecting in the same six areas. I also use copious amounts of moisturizer several times a day to ease the alligator skin that has formed around this area. This tx is brutal and my once OK skin is so dry and rough that I probably could hang a sweater on it. Also, I look like one of those wrinkle pups as I have lost so much weight along with not doing exercise the muscle tone is nil so it just hangs there.

Yesterday, I did some major furniture shopping. MAJOR. I’ll take pictures and post them once the pieces are delivered over the next few weeks. A couch, chair, antique white table and sideboard and black vase will complete some of the empty areas of the house. We dragged one table and the black vase home. I haven’t the energy to wash them down today. They will have to wait.

My husband and I also met up with friends who haven’t seen me since November 2007 and they commented on my weight loss. Also, my friend is a hairdresser and, well, you know…my hair looks like crap (what’s left of it).

I was also into my old workplace last Thursday and it has been weeks since I was there. Several co-workers commented on how exhausted I looked and that I had better get out of the secondment as it’s too much for me. Little do they know. Along with that one co-worker squawked about my eyelashes and how long they are…can you imagine! I couldn’t believe that she noticed it. She will rant on about that and send people down to look at me when I return in a couple of weeks.

My days of working full time are numbered. I feel like I have taken it to the chin long enough. Time to look after me. I would have taken more time off this past year, but because I have the 72 week tour of duty I have to hang in these days as long as I can to keep my sick time for the last 36 weeks of treatment. I don’t think I’ll make it to the 36 weeks working full time. I’ll have to worry about those days at the end when the time comes. I’ll hardly care I’ll be so happy if I make it to the 72 weeks.

As terrylee8 suggested …keep repeating the mantra…”I’m undetectable, I’m undetectable, I’m undetectable…”

First Easter Memory & Shot 27

2008-03-22T08:31:00.003-03:00

At 27 years of age I spent the year recovering from an emergency surgery and battling the sides of a steroid medication to combat endometriosis. I persevered and took the drug for the full 12 months scribed. The sides were not great, but I stayed with it. It wasn’t a life threatening illness and I was thankful that I didn’t have a worse prognosis other than endometriosis.

On a lighter note, this being Easter, I should write about my first childhood memory. I had to be very young (later 50’s) and we took a rare family trip to visit friends of my parents. These friends owned a store and I can remember being carried into the store in my Dad’s arms and he pointed out a huge chocolate Easter Bunny. I was in awe! I never forgot that huge chocolate Easter bunny and I wished for one of my own. I never asked for one until I was older and Mom managed to get me a hollow Easter chicken. Crap! I wanted the bunny that was nearly as huge as me. LOL Hey, I was lucky to get the chicken!

Well, shot 27 is done and the two worst sides are fatigue and now I am plagued with major itching. Layers and layers of different creams, cortisone (used sparingly), anti-itch creams and the occasional antihistamine are only giving me temporary relief. The hair thinning is bad, but it’s more psychological than a real problem. I use the Nioxin product for thinning hair, but as one forum member indicated when I first started visiting the forums…”It doesn’t matter what you do, what product you use, if the tx is going to make your hair fall out or thin drastically, it will happen. You cannot stop it.” She was right.

Undetectable!

2008-03-18T18:57:00.000-03:00

Undetectable!

23 Week PCR

46 weeks left

Shot 26

2008-03-15T09:17:00.001-03:00

At 26 years of age I was whisked into the local hospital for emergency surgery for Endometriosis (sorry, guys, girlie stuff). It was nasty stuff, but not life threatening. I was a trooper and took that punch on the chin. I was put on a year of meds following the surgery to curb any problems. There is no chance of clearing Endometriosis they can only settle it down with drugs. However, it did reduce my chances of having children.

I had blood tests done yesterday scribed by my local doc to see if my week off work helped my WBC & HGB, etc. I expect he’ll go into panic mode when he receives the results.

I am still waiting for word regarding my 23 week PCR.

1/3 Completed

2008-03-09T08:29:00.005-03:00

I found this on a Hep C forum “Med Help” and I thought it was worthy of acknowledging it in my blog.

After recovering from hepatitis C

by xapbkob, Mar 07, 2008 04:20AM
I am dating a woman who had Hepatitis C. She was able to recover from it and says that she does not have it anymore. What could I expect if I to marry her? Will I have to use condoms , or will we have problems having children? Is there a possibility for anyone to be infected from her?

FI Guy
Mar 07, 2008 07:48AM
To: xap
If you have found life partner who has cleared hcv, you are a truly lucky guy. People who have battled and beat this disease display traits that are not only admirable but necessary for success in life. They demonstrate commitment, fortitude, a sense of purpose and an understanding of the difficulties of achieving a difficult goal. The real question that you should be asking is if you are worthy of such a person.

I was, as the Brit’s would say, chuffed to the buttons when I read this response from FI Guy. I perceived this to refer as anyone who has gone through treatment (male or female) and gave it their best attempt to clear no matter what the outcome.

I can only hope that I make it 72 weeks through this journey.

Waiting on my 23 week PCR results and that will tell the story if I am to continue with treatment. It will be a wait!

Shot 25 this week is completed.

Shot 24

2008-03-01T15:27:00.003-04:00

My Dad passed away with bowel cancer the year I turned 24. He walked me down the aisle at my wedding in May of ’78 and was gone by January ’79. I wasn’t close to him, but he was “somewhat” around when I was a child and growing up. My mom stayed with him until I (the baby of the family) graduated from high school. He wasn’t a warm fuzzy type of Dad. He was away working or road running more than he was home. However, it’s all I knew. I was used to it and accepted it. I loved him in my own way even though he created an emotional distance between himself and his children. Unfortunately, my bother inherited Dad’s standoffishness. However, at 24 years of age his death floored me.

I don’t even remember where he is buried and it’s somewhere in this shire. It has horrified people when I admit this to them.

“Old Man, look at my life, 24 and there’s so much more…” to quote Neil Young. I noticed that JB quoted Neil Young in a post “long may you run…” I managed to see Neil in concert years ago and, unfortunately, it was during his country music mistake. He did play his classics, however, the warm up group was The Judd’s. Naomi Judd is a great advocate for Hep C here in North America and I think back to that concert and now I know that many people sitting there were carriers of Hep C, but didn’t know it...me included.

I’m babbling today.

Consequently, if I am allowed to continue I shall be 1/3 through my treatment. I am waiting for a PCR test result and I expect it will take weeks to receive the results. My bloods took a drop this last month and I am waiting to hear how my HGB is doing. I know that my WBC is low as the nurse called and indicated that on Wednesday.

She thinks I’m “overdoing it” However, I figure my HGB is lower as I am getting mild headaches by the end of the week and yesterday’s headache was enough to take a couple of Tylenol throughout the day. I am dizzy and exhausted so I have been trying to rest. I cannot do much else, but I would force myself to do things and now I’m not. There are toilets to be scrubbed, sinks to be cleaned and I just cannot do it right now. I think I’ll hire someone.

I am going to try and get copies of my recent tests from my regular doc.

Trying to Upload New Pic to Forum

2008-02-16T18:05:00.002-04:00

Shot 22

2008-02-16T12:18:00.009-04:00

Yesterday, Friday, I experienced “riba rage”. I suffered from occasional “riba rant” up to this point. People on treatment refer to it, but I got a taste of it and I had a huge struggle to keep myself in check. Friday just kept getting increasingly worse for me and in the early morning I was a ranting lunatic over a stupid family dinner that was sprung on me the night before. (You know…the old…”Let’s have a party at your house.” Syndrome) It was smooth how my poor Mom organized it. However, she knows I’m not feeling well, but doesn’t know that I inject myself with chemo every Friday night. This wouldn’t be happening, however, she thinks I’m on arthritis meds.

I was like a deer caught in the headlights because I had no way of talking my Mom out of it. I tried everything, but she was hanging on because she thought my brother was able to attend so she wanted to keep the idea going. My sis who knows what’s going on tried to put the brakes to it and, finally, late Friday night I got the call that I was pardoned. It wore me out as I didn’t want any family dinners until Easter and it would be easier for me to recover on a long weekend. Christmas dinner for 12 was exhausting and I was off on vacation several days that time.

Here’s the dirt on my three month position. I have been so upset lately and I’m just doing my time until I get back to my regular position the end of March. I signed up for the short term position and given a verbal claim that they would pay me 10% more than what I was making at my previous job along with travel reimbursement. I didn’t think was much, however, I was going for the learning experience and the possibility of “phased retirement” where I could do these audits part time.

I knew it was a non union position and only temporary, however, I still had protection of my seniority with union for this short term.

Prior to taking this position I was an eight hour employee and was shocked when I received my pay that I was reduced to a 7.5 hour employee. Apparently, they neglected to tell me that it wasn’t 10% more on my gross wages, but 10% more an hour. I tried to get this all in writing at the first before taking the temporary position and would email people and they would call me back with the info and not answer the emails. I was hesitant and I should have gone with my gut feeling that I needed this in writing. However, being a 24 year employee I thought that it was straightforward because others had done it before me. However, these were new non-union positions that were temporary. Management adjusted the positions to suit them and save some money. Anyhow, I’m taking home the grand total of $2.92 extra on my pay a day and I’m still working eight to 8.5 hours a day. What a joke. Therefore, I am not ahead financially. Also, I find out yesterday that they are going to “dick” me around on the travel claims.

The main boss called me when I kicked up a stink about it and didn’t want me to leave the position and go back to my previous job. He indicated that it was his error and he didn’t calculate that I was an eight hour employee and even though he couldn’t pay me eight hours I am to keep records of the extra time worked and he would see if he could compensate me in the end. This, of course, was verbal. (also a crock of shit) Unfortunately, my site boss has to sign off the extra hours. What a joke. He’s hardly there when I am there and he’s not home with me at night and on the weekends to verify that I am doing work for my employer. I am keeping records for myself only to use for ammo if they ask me to do this job again. I stayed in it because there were other people depending on me to complete the job. There is a casual employee at my regular job and I want to keep her trained in case I have to go on work reduction or if I get too sick on treatment. This should benefit me in the long run, but things don’t usually work out to plan. I also stayed on the job because it vented my anger elsewhere and kept me preoccupied and not thinking about my treatment, but my site boss is wearing me down.

My boss is scattered and disorganized and I have no clue why this person has this job. He doesn’t know how to prioritize his work and doesn’t complete tasks when he should. The brain fog was bad for me last week and being with a disorganized person wrecks me. He gives me stuff to do then either changes it or moves parts of it from the filing system when I need to retrieve the info. Not good when you have your wits about you … even less productive when you don’t on chemo.

Thursday I organized it so that I just had to stop off at the main office on my way through to do an audit at another site on Friday morning. I wanted to get to the site early and get it done. My boss and I conflict on work times as he procrastinates getting to work. I get there on time and still stay late because he keeps me there. It doesn’t matter when I come into work it just never works out and my goal is to get home by 5 to take my meds with food.

My boss is not very organized, but I have to depend on him for reference documents for the audits as I don’t have access to the info. When I rushed into my office in the early morning I discovered that Mr. DISORGANIZED didn’t have my stuff prepared that he indicated he would have ready in the early morning I was frothing. He left me a voice mail to inform me that he opted to go home the night before instead of staying to do the required print offs. It would have taken him ten minutes throughout the day to do it. I felt like biffing all my organized stuff from my car (that I dragged out the night before and dragged home which is heavy and exhausting while on tx) off the side wall of the main office I was so livid. I was frothing and I had to keep myself in check. He rolled in around 9 when he should be there at 8:30 a.m. I hate depending on him to complete my job as it makes me appear inefficient. He won’t get his money’s worth out off me because I am there to reduce his workload and he’s not helping himself much by being so disorganized.

Anyhow, he left at 1:30 p.m. Friday to do a personal thing and I was left without the audit completed.

It’s the meds and I have to be very careful that I don’t get dwelling on how sorry I feel for myself. I did get very low yesterday.

Therefore, I am doing nothing this weekend and going no where. I feel ok early this morning following my 22nd shot, but that doesn’t predict the day or the week.

I’m trying to calm down.

Shot 21

2008-02-10T09:15:00.000-04:00

When I turned 21 years of age I was devastated as it made me officially an adult. I even had tears well up in my eyes. I wanted to be “18 til I die” in the famous words of Canadian rocker, Brian Adams. I had to make decisions and decide what to do with my life as time was moving on for me. It was a mixed up time in my life as it is with so many young people today. It was an era as a female that you picked a profession or got married.

Shot 21 makes me an adult tx’er now. I am in the game and I have to push through it no matter what the outcome. I’ll know by the end March if this tx is even working for me.

My anger at the virus keeps me going through this tedious ordeal.

I am pretty quiet on the forums these days as I am exhausted. I’m there though … reading and keeping up with all my pals.

Shot 20

2008-02-03T15:52:00.000-04:00

This is my new Burmese Girl, Frankie. She is a great comfort to me throughout this treatment.

I’d try to post more, but my life is so boring right now.

I get up, coffee, eat/ribas , go to work, exhaust myself, come home, eat/ribas, flop on chair, fudge stick (my treat that doesn’t wreck my stomach), go to bed, heating pad, fight the kitten for the heating pad, read until I’m tired…and every Friday night, just for the thrill of it…I get to inject myself with a needle full of insecticide. Jeez, I’m even bored with it why the hell bore the rest of you with it. LOL

However, I did manage to get out of the house with my husband to purchase a power generator yesterday. It’s a much needed necessity here now that our power company went public several years ago. The power outages are frequent and long term. I have never witnessed the power outages here since the power company went public. They are trying to make the best bang for their buck so that means not doing any preventative maintenance. They do reactive repairs and it takes days for them to figure it out with all the aging equipment they have let fall down around us while they are saving money for their private investors.

The hair thinning is daunting, isn’t it? It’s only noticeable to me right now as I planned for it and cut and chemically enhanced the colour of my hair prior to starting my tx tour of duty. The thinning started around week 14 and at week 20 it’s not slowing down. I do hope that it will slow down. It seems to be an all over loss not in patches and I was told by a pal who is on another treatment that causes hair loss that it’s a good sign and could mean that I won’t have huge bald patches. Whatever happens with my hair it won’t take me off treatment. I’ll just have to hide. LOL

I figure that most people don’t notice stuff too much about other people unless it’s extreme. Also, if they do notice it most people are too polite to mention it.

I weighed in at 136.8 lbs last Friday which is low for my height. The first time I ever weighed myself was when I was in high school and I weighed 136 lbs. I’m below my BMI this week and it’s noticeable. The weight loss was questioned on Friday. One of my male co-workers commented on it because I hadn’t seen him in a long while. I just indicated that I was on some meds that were knocking the heck out of me. He asked no more and I volunteered no extra info. He accepted that explanation.

I am worried about my bones, though. I used to take vitamin D & E and now I find that it makes me ill feeling so I don’t take it now. I don’t feel well taking anything else extra. I used to drink a lot more milk, but I have replaced it with more yogurt and cheese, however, I don’t think it’s enough. Calcium tablets upset my stomach even when I’m off tx so I can’t take them. Also, my scare with melanoma in 2004 has made me the sunscreen queen. I’ll have to get a few minutes of sunshine as much as I can for vitamin D, but that’s hard in the winter here.

I have tried the biotin for my hair. I take 1000 mg a day and my pharmacist & NP are indicating that there should be no problem with taking it with my tx. .

Shot 20 this week and I had a much better weekend than last weekend.

19

2008-01-28T18:57:00.000-04:00

I remember when I turned 19. It's the legal drinking age here in my province and I went to a bar. The bar closed down years ago, but I remember feeling all grown up and enjoying the social aspect of it. I wasn't much of a drinker, however, I do miss my good glass of wine with dinner now and again. I miss the social aspect of it.

I am feeling like crap. I am functioning, but I feel like crap.

I needed support when I was diagnosed with Hep C and the UK forum was such a positive place when I logged in when I became a member way back in May 2007. Now it has scared the hell out of me regarding the in fighting, the exodus of long time members, logging IP addy’s and seeking out people for their exact geographical area they live along with possibility and accusations that pm’s and monitoring their pm’s. The innuendos made in various posts that no one can be trusted. Have I become swept up with the paranoia wondering who is a friend and who isn’t? Nope! My friends here are supportive not sniping or oiling for fights all the time. LOL

I have pulled back tremendously from the UK forum that should have been full of support. The “in fighting” and accusations scare the hell out of me and I don’t want to be a part of it.

What a loss of knowledge for me as I am hesitant to even ask a question about my sides or my treatment on the UK forum. I don’t share too much anymore regarding my treatment or sides. I have a long haul if I make it through this treatment.

My tx buddies also seem to be struggling the same as I am trying to find a common ground. We want to support everyone and want to get on with a more positive situation as treatment and the illness is such a negative situation for everyone.

I am thankful that I have my friends on this blog and we all share a common goal of getting through this and those that have made it through treatment are here for me as well.

I wasn’t perky this weekend after my 19th shot on Friday night. I did absolute nothing on the weekend.

Shot 18

2008-01-22T05:54:00.001-04:00

My workstation has been improved for my height and now I am trying to organize and clean it up. I’ll take in a can of liquid air to give it all a good dusting. It’s one thing about old stuff it’s a hell of a lot better if it’s clean, neat and organized looking. The scruff on the desktop items (computer, adding machine and storage units) is disgusting. Food slop and just plain scruff is just not professional for me. My boss won’t let me get to that aspect and he is out today and I’ll try to get some of the stuff cleaned off with a bottle of spray cleaner and paper towels I talked the custodian out off last week. I am doing it in bits when he’s not around.

Shot 18 last Friday night. I’m fighting the battle and feeling like I have been dragged through a knothole, but I’m hanging in with the fight.

Shot 17 Hair Today Gone Tomorrow

2008-01-12T09:42:00.000-04:00

My New Office!

That is not an ocean view out that window...it's another office. My office is the former walkway to this other office and has another desk in this same area to be shared with a casual employees for another department. Most of the walls are the backs of file cabinets. Everything is full of other people's stuff even under my desk and around me. Note the mega plants and mega trinkets on top of file cabinets. This is only 1/3 of the view of all this junk on top of file cabinets. The whole office area is full of this dust gathering crap.

What a hole!

A friend of mine went to train to be an electrologist (spelling?). We were sitting around at a party one night trying to come up with names for her new business. My husband came up with “Hair Today Gone Tomorrow”.

I am getting the itchy rash on my chest and back. I’ve had it for weeks, but I was in denial. I tried to be tough and refrain from using the hydrocortisone. I did purchase the over the counter .5% hydrocortisone cream as suggested by my NP. It helps at night with the itch. I do wonder how safe it is to use once a night continuously. I have a little splotchy areas around my hairline and I have only used it twice on that area as I know it’s not a good thing to use often on your face. I think. My hair is ending up in the shower drain and the bathroom sink. Gulp! It’s not a nice feeling

I am a 24 year employee with my business and I walked into my new job on Monday and my work station is totally unsuitable for me. I didn’t take my special ordered chair from my other place of employment and the desk was set up for someone 5’ 2”. I am clumped in a cubby hole with another desk to be shared with another temp employee they hire occasionally to help work overload in payroll. Mega boxes of their dead files are dumped in the same area. I had to go home and put the heating pad on my back every night this week and by the fourth evening I was ready to throw in the towel because almost everything I asked for or suggested to improve my station was put off by my immediate supervisor. I was told that they wouldn’t set up work station for a temporary employee. I am not a temporary employee. I am a 24 year employee and as my husband said to me this morning…”Rose, they came after you because of your experience…you shouldn’t be subjected to an improper work station, inefficient supplies and organization material.”

I’m not asking for a new workstation I am asking for a proper set up for my height and a proper work station with the stuff that is already available in the area I am required to work out off for three months. (I expect I’ll be working there more than that throughout the years.) On Thursday my boss from my other workplace had my chair sent over (and she is not happy with what they replaced it with…) I don’t blame her. It’s absolute disgusting, dirty broken junk. I was shocked at the condition of the equipment at our “main office”.

Friday maintenance came in and set my desk up on blocks to accommodate my keyboard posture. That helped, but I was made to feel as if I were a whiner and asking for too much by some office staff and maintenance.

On Monday I was given pencils and minimal supplies from someone else’s desk and thrown into the main work without the time to organize myself. I am given cast offs from other people’s desks that didn’t suit them. Therefore, they don’t suit me either. I am not allowed to pick out my planner organizer they will pick it out for me as I have to take what I can get. I wanted them to take their organizer and shove it up their arses. (I love this Riba…it helps me say this stuff “out loud”. ) I was admonished when I asked to send along the order code for the organizer that suits me. “You take what you get” was the response.

Someone in that office has at least a hundred plants along with their cast off dust gathering trinkets that they have picked up at yard sales over the years cluttering the whole place. They also bring their outside geraniums and summer patio plants into the office area (huge pots) to over winter them and the, dust, dirt and decay that the staff is subjected too is unbelievable. I could hardly believe it. They may as well light a smoke up at their desks as the allergens they are subjecting all their co-workers too with this dust and decay is unbelievable.

One worker there has been plagued with sinus problems for years and they removed the rug from her office. It didn't work for her and she is still bothered by it. Yah, think! I didn’t realize that she was subjected to all that decay for years.

I worked extra time this week and I won’t get paid for it. Yesterday, the supervisor consumed so much of my time sitting in the junk heap area of my office that I couldn’t even get a snack and only had time to grab a muffin for lunch. I expect that it will be the norm. I dropped 14 lbs since starting tx and this is not a good situation if I cannot eat.

I also will have to go in early next week to organize myself as my supervisor will not give me time to get organized. I will add all these extra hours into my work time to see if it is worth the extra money to even bother with this position after my three months are done. I won't get paid for the hours, but I want to keep a record to see if it's really worth my health. LOL

On a positive note I have learned some things that will help me with my regular position when I go back there in April.

Oh Yah! Shot 17 last night. I can feel a low weekend coming on with a vengeance.

Shot 16

2008-01-06T18:37:00.000-04:00

16…Sigh! Every time I thought about the 16th shot this weekend for some reason I remembered my 16th birthday. I spent it at the beach as my birthday is in the middle of summer. I can even remember the bathing suit I wore that day. I was probably full of hope and had stars in my eyes. I am melancholy today. So much I could have done with my life and spent it waiting for something.

I’m not sure what I was waiting for now.

When I get through this treatment, no matter what, I am going to live my life very differently. I will take more chances, travel more and live my life for me because it didn’t help me following the straight and narrow. I thought I was safe by not taking any chances and staying cloistered with all the safe people in my life. Boy, was I self-mislead.

I'm pissed off! LOL

I survived Saturday and Sunday following the shot. I actually went for groceries on Saturday afternoon. The grocery trip is a milestone for someone who spent the first 15 weekends on treatment like a beached whale.

I expect I’ll get a bit wiped tomorrow as I usually do on Monday morning early. It’s the first day at my new job. I hope the brain fog doesn’t expose me as a fraud.

To Party or Not?

2007-12-28T08:29:00.000-04:00

I feel like crap. I think it’s because of the change in my lifestyle the last couple of weeks and all the Christmas activities that I tired to do. Mind you I didn’t do a whole lot, but what extra I did has made me feel like absolute crap since Christmas Day. I couldn’t’ get the legs under me on the 26th or the 27th. I had hoped to feel pretty good before my needle tonight because I was off work on vacation all week. Nope! I feel like major CRAP!

I jumped on the scales and I’m 139 lbs this morning. Not a good thing for someone 5’ 11” at the tender age of permanent 49. I just purchased four new pairs of dress pants for work last week to hide the weight loss. If the pants fit better you don’t look so thin if they aren’t hanging off your bottom. There is one ladies tall store where I live and they only go down to a size 7 in a youth fit. I am not a youth and those hipster pants just aren’t working for me. LOL

Also, we got a call to go down to friend’s tonight for a get together. I thought I was brave enough that I could take my needle at 8 p.m. as usual pop a Tylenol and go down for a couple of hours. I’ll probably do it when I come home. I checked on the forum and Ross indicated it won’t hurt me to delay it a few hours and I probably should wait until I come home to do the shot.

I should try to get there for a few hours to put the crew off the scent that I’m not feeling up to par and not attending social activities. I will be questioned with the reason why I'm not drinking even though they haven't seen me drink at social activity since last January. (prior to dx) I think I can hold my own, however, the friend we will be traveling with did say the day she saw me a few weeks ago and indicated that I looked exhausted.

I expect I do.

Fake it until you make it!

My Christmas Dinner Spaz

2007-12-27T08:16:00.000-04:00

I did as little as I could get away with throughout Christmas Eve and Christmas day, but it was more than my usual “slug state”.

I am licked!

I did a riba rant, shamefully, over my good flatware after everyone left following Christmas dinner. I did the same thing after Thanksgiving dinner and, ironically, following Thanksgiving dinner I vowed not to put any of my good dishes or flatware out until I was finished tx and thinking more logically. However, I had an extra guest for Christmas dinner who turned up at the last minute and I made the decision to put out my good flatware as my regular stuff is not the best. Being the only female in a house full of men I have to watch my good dishes and, of course, my elderly Mom causes me “grievous agony” with my good dishes and flatware at the best of times when I wasn’t on tx.

I look after it and I hand wash myself so that it remains the same year after year after it is used. When I had my wits about me prior to tx I could monitor that none of it went into the dishwasher or managed to get mixed into with the regular everyday flatware. I went days after Thanksgiving dinner looking for a fork that was missing. I ranted for days about it. It finally turned up and NO One would admit to the deed. (No wonder! LOL)

Well, the same thing happened following Christmas dinner only they put my good stuff in the dishwasher and, eventually, three knives and two forks were among the missing. I couldn’t find them for the life of me and after searching and searching obsessively for them I absolutely lost the plot. I know what I was doing was abnormal. LOL

Good thing it was only my poor husband who witnessed it. I was furious and I knew that I cannot put this stuff out anymore no matter what while I’m on treatment.

I need to get a life! LOL

Christmas dinner for 12 people (same as feeding 18 of a normal family...lol...big eaters) put me into a tailspin and I couldn’t find anything as things were not put back in their proper place. I couldn’t get near my kitchen to do my stuff as it was full of other people running the show. I was disorganized, totally unprepared and didn’t have the energy to do it. I usually have these huge dinners down to a fine art. Planned to the minute. Not this year!

I can only hope that I am still on this tx this time next year. Odd thing to wish for, however, it will mean that I made it past the 48 weeks and I’m into the extra 24 and only a month left that I have to treat to try and clear this virus. However, there is no one else that can take on Christmas dinner. It was always my responsibility and my Mom is 80 and my sister is crippled up with obesity so I am the only one to do it.

I made it through this one.

I’m not so sure I shall be able to make it through another one.

Merry Christmas Everyone!

2007-12-25T08:20:00.001-04:00

Merry Christmas to all!

Health & Happiness in the New Year.

Preparing for Christmas

2007-12-23T07:19:00.000-04:00

I managed to get the gifts purchased and wrapped the last several weeks with some help from my husband. Saturday was a day of gift wrapping and I do appreciate those bags that you can dump the gift into instead of the cutting and taping of the rolls of wrapping paper. Just figuring out how to cut it and wrap it…along with what tag and ribbon to use just boggled my mind. It seemed too complicated. LOL My husband has told me that my brain fog has just brought me down to the level of everyone else. He’s a laugh a minute!

My Christmas doesn’t usually have my usual finesse and I am disappointed that none of the extra touches are done. I don’t have the energy to do it all and it will be the first Christmas in 20 years that I won’t have my Christmas table set with my Christmas dishes. It will be a 10% Christmas on my scale of 100%.

I didn’t entertain, bake, decorate extensively or purchase the perfect little gifts for my boys and my family. I couldn’t go anywhere to be entertained and had to give up many social invitations pretending that I was already booked with another event to attend. I don’t want to get into discussions with very prying friends why I am not having my social glass of wine. It’s daunting to know that this will be my life for the next year and a half. I can only say that I tried the treatment and it’s not too big of a price to pay if this is all I have to lament.

My whole world evolves around injecting that needle on Friday night…getting those two pills into me at an early dinner so that I am not suffering from wired sides at night. No one I know entertains dinner at 5 p.m. Also, where I have to take the pills in the middle of the meal with yoghurt it certainly puts a damper on having a meal in public and raising a few eyebrows. I can go without the yoghurt if it’s a big enough meal, however, I have to stop my meal, reach into my purse and eat the pills. I could get up in the middle of the meal and go take them in the washroom, I guess. I’ll eventually get around that I suppose. However, talk about bringing unwanted attention and questions to the ritual that I don’t want to discuss.

On a much brighter note other than feeling sorry for myself…lol… I had very good blood tests results from last week and the nurse practitioner is hopeful that being this far into the treatment my bloods should stay the same. I can only hope that they will.

NP is concerned that my blood sugar is low and is questioning whether I am eating enough. Yup! I have no room for any more food. I never go hungry and I am eating well balanced healthy meals. I always had a little trouble with low blood sugar and didn’t think it was an issue. It seems to be showing up in this treatment. She told me to eat copious amounts of junk to get the blood sugar up and I was never a huge junk eater…except fresh plain salted chips. (crisps for all you UK’ers) My nemesis has always been chips.

Shot 14 down on Friday night. Saturday was a good day. This morning I am feeling a bit off. I usually do feel flu-like in the mornings and improve throughout the day. Ironically, one would think that I’d be better in the mornings after a night’s sleep. Nope! Of course, by the evening I have increased fatigue.

Job Offer...Worst Possible Time of My Career

2007-12-16T08:39:00.000-04:00

I received a call last Wednesday and I am gob smacked. I have been offered three month term position by my employer. Head office wants to second me from my regular job to put me out in a management position. It’s a good one and it’s working at different work sites locally regarding auditing. It’s not heavy duty, but it can open some doors for me once I am feeling better if I get through tx . (or not!)

TX is my mission right now, however, this three month position will be beneficial to me upon retirement as I would possibly be able to “ease out” and work some, but not full time when the time arrives. My pension plan was very crappy and I will not have a good pension when I am required to retire.

It’s not a strenuous job, it’s a thinking job.

I won’t be able to hide as well as I could at my regular job.

I have no idea how my sides will change during the next three months. No one on treatment has this knowledge.

This opportunity has come up and I had been longing for a chance at this opportunity for years only to have it come up at the worst possible time of my career. It was never even an option for me as I was always “passed over” and someone else (the same person every time) was chosen. That person was not considered this time. I was shocked.

I asked them for an extension of the weekend to make up my mind. I know they are shocked that I hesitated as they figured I would jump at the position. The contributing factor is I am on long term chemotherapy and trying to hide the fact that I have this virus.

I have a very nasty tyrant for a co-worker and this might compound problems for my other colleagues in my current workplace if I take the position. (Knowing her it will be a problem)

I waffled for days over this and put things in order at work as if I am taking the short term job, however, I do wish it were a decision I didn’t have to make this year. The opportunity will not be offered again and they will move on very quickly to someone else if I refuse and that person will benefit.

Interesting what life hands you, isn’t it?

Someone told me a long time ago (my current boss) that “things happen for a reason”.

Shot 13 down Friday, December 14. That puts me into the 50’s left. 59 to be exact.

What a trip.

Shot 12

2007-12-09T08:01:00.000-04:00

I overdid it at work on Thursday and managed to acquire a hulking migraine by Friday morning. I am not susceptible to headaches, but this one was sickening. I am working eight hour days with no major breaks in the day and I was forced to work on someone else’s project in order to speed it up as this other person has been dragging their heels doing it. I had to do it so that my part will meet the deadline looming next week. I stressed myself and focused on it all Thursday so it was inevitable that I would feel like crap on Friday. I was delayed getting into work about an hour after the Tylenol kicked in and my stomach settled down from the headache. I was seedy all day, but I was OK to function.

Also, a co-worker was out for two days (Thursday and Friday) so it compounds my job when she is out. She misses major amounts of time and it’s going to hit them hard when I go on reduced work load and then when I eventually take off sick time they might notice the burn. I realize everyone is replaceable. :(

I was eager to get home by the end of the day.

I decided on Friday that I could not do Christmas. On Saturday the family unit, the boys, husband and one of the boy’s beautiful girlfriend, J, all got together and decorated my two trees. I am such a fanatic about my Christmas trees that it would take me a week or so to decorate them in the past. However, when I came out off the bedroom after my exhausted nap on Saturday afternoon the trees were done and were perfect. They were the most beautiful Christmas trees I ever had because everyone chipped in to get it done. Being the only female with three males for all these years I had to orchestrate everything. I always thought that they didn’t really pay attention to it all, but this year it just warmed my heart how much they remembered and how much they kicked in to help. The boys are going to pick out stuff for each other’s socks. I cannot shop, I cannot go and do and I cannot function through this season without help.

The 12 shot is done at full strength. I have not had my bloods done since November 7. I have to have one done on the 17th of December before my appointment in the clinic.

I think I’m holding my own. However, folding a sheet is a major task and I had to rest after I put each blanket on the bed when I changed it today.

The Dentist!

2007-12-03T18:55:00.000-04:00

I made it to my dentist today. My older son couldn’t make his appointment this morning so I took his place. This is the first time I had been back to the dentist since my diagnosis.

The cleaning is done and over with and a huge milestone for me because this bothered me terribly going back to my dentist’s office after I had to admit to him that I was diagnosed with hep c last spring. It was a struggle to tell him and I left him to the last person I had to tell.

My poor dentist knows that I have one huge dentist phobia. Ironically, all these years I was so fearful of picking up some heinous disease from a dentist that I would always insist on the first appointment of the day so I would be sure that all the instruments used for cleaning teeth would be fresh from the autoclave.

Even though I do not know where and when I picked up hep c the only possibility I have focused on since my diagnosis has been dental surgery in the 60’s & 70’s. We had a very skanky dentist in my home town at that time. He was a legend in skanky. However, as a child I also lined up for those inoculations and I keep wondering about those TB shots where they punctured us with the same instrument after clipping on a new plate.

Even though my dentist is immaculate and he assures me I am safe with him and patients who come in after me will be safe I am having a struggle with this aspect of my life.

I am a wreck with it.

Shot 11 was smooth and uneventful. Same old, same old, fatigue.

Woof!

2007-11-27T19:05:00.000-04:00

I didn' t rally around until this afternoon. I was ill and managing to put one foot ahead of the other since Friday afternoon last week. I am suspicious that I may have had a bout of the flu as co-workers are off with it. Ironically, I didn't take a day off as I thought it was tx. I don't want to use up my sick days yet. With 62 more weeks left I kind of think I should hoard them. I wonder if the riba kept the flu in check as I didn't get it as badly as my co-workers ?

Browsing the Net and found this!

2007-11-25T08:25:00.000-04:00

http://hepcfriends.activeboard.com

Shot # 10

2007-11-24T17:38:00.001-04:00

I had a miserable evening last night after coming home from work. I was sick as a dog and I think now that I didn’t eat enough with my pills I had with dinner. I managed to stop the urge to vomit with deep breathing and I did get up off the bed at 7:30 to do my injection. I was not well all day today and I stayed close to the bed.

10.5 pounds less and I hope I’m not getting to the nausea stage of this treatment that so many people seem to go through. I was doing well with not having nausea. I’ll have to force more food down as it was not pleasant evening on Friday.

I worked 40 hours this week and that could have been a contributing factor to the downslide on Friday.

I shall push on!

63 More Weeks

2007-11-18T18:42:00.001-04:00

I was feeling so well by Tuesday last week that it was scary. I had a miserable Monday and the rest of the week I almost felt OK. I had my shot # 9 on Friday night and I actually had an OK weekend. I didn’t go anywhere or do anything the last nine weekends because I don’t know how I’m going to feel from one hour to the next.

I had a nosebleed this morning, but it might be from the dry air from indoor heating although I’m not prone to nosebleeds. I won’t be seeing the NP until the end of December so I might get my own doc to check my blood.

Let’s see if the second peak of the meds hits me tonight at midnight (my theory) and see how I feel on Monday.

64 More Weeks

2007-11-10T07:45:00.000-04:00

I didn’t get a two log drop on my four week bloods. 1.63 drop so I get to plug along and not have another PCR test until week 24. This makes absolutely no sense to me. However, when I questioned the NP she said…”It’s all I have to offer.”

At least it’s working. My bloods from Oct 19 indicate that my ALT is 28 and my AST is 24 so that tells me that the minor inflammation I had prior to starting tx is now under control.

The NP called yesterday to tell me that my HB dropped from 106 to 104 in two weeks so I hope that it will level off. She was also concerned that my blood sugar dropped. I’m feeling the burn. I took shot eight last night I took a really bad fall a few hours later when I was chasing the kitten so I can no longer trust myself to be sure footed. This morning I feel as if I were pummeled. My neck, shoulders, arm and hand are very sore. I didn't think I was going to bruise earlier today, but it's a deep one on my hand and thumb. I am hoping that it's not visible by the time I go to work on Tuesday. Extremely sore this evening along with needle sides.

Week 7

2007-11-06T19:09:00.001-04:00

I had the usual beached whale feeling Saturday and Sunday, however, Monday and Tuesday really knocked me for a loop. I was breathless and the fatigue is worse. I’m still upright, though. I just move slower.

I find out this week how my viral load did on the four week bloods.

Week 6

2007-11-01T17:44:00.000-03:00

I am holding my own. Pretty well wiped by the time I get home from work. Some nights I manage to do a little bit, but I wear down fast.

What's with this shaky, wobbly voice that I have acquired? I sound feeble and worn out when I talk. My friend thinks I have a terrible cold and eventually when this rough voice doesn't ease up I'll have to admit that I'm on some sort of meds.

Went to my regular doc this week and had the six month shot of Twinrix. I probably should have waited until I was finished treatment. I'll get it checked around Christmas time to see if it worked or if the tx has supressed it. I also received a flu shot even though the NP told me that it wouldn't do me any good. My doc didn't hold much interest in the NP's advice. LOL

Week 5

2007-10-22T05:34:00.000-03:00

NP called husband this afternoon to tell me that my hemoglobin is a bit low and that's what is going on with the shortness of breath. It's not bad, but I noticed it.

Beginning viral load is 549,540

I had my four week viral load done and my whole treatment seems to be based on this four week viral load.

I am very mixed up after talking to my NP here are my options when I get the results of last week’s tests and I am thrown for a loop because NP said my four week tests will determine the following:

If I have a one log drop I’ll have to stop
If I have 1-2 log drop I’ll have to treat 72 weeks
If I have 2 log drop “but still measure” then I have to treat 72 weeks
If I have 2 log drop and “not measure” I will have to treat 48 weeks.

If I continue I will not get another viral load test until week 24

I expect the rules to change as I go along with this NP as they were certainly changed when I received the hand written options listed above from her last week. It hardly seems fair that so much is determined by a four week outcome when other places in the world wait until the eight or 12 week outcomes to determine stopping or length of treatment.

Let’s hope I misunderstood, but it’s written on a piece of paper here and it appears these decisions are made after my four week VL test.

Shot number five Friday Oct 19.

I did a bit better this weekend when I didn’t hold back on the extra strength Tylenol. According to NP I am only allowed 2000 mg in 24 hour period. I was skimping on them prior to this weekend and I just took them every six hours for the first day and got along much better. It’s my new plan.

I was horizontal most of Saturday and Sunday I felt seedy. I notice I have very little energy on the weekends so my major work around the house has to be broken up into chunks on week nights when I am feeling good enough to do the necessary cleaning of bathrooms.

I am avoiding one of my friends as she will be relentless with figuring out what is wrong with me. She is busy with a major thing in her own life and that will probably take the heat off me until the middle of December then I’m on my own with her and it will be difficult to hide that I am not available on the weekends to do stuff with her.

I had to use the cold excuse this weekend and had to miss a major yearly party.

Ironically, my voice is gravelly as if I have a cold and I think it’s all out exhaustion from the meds. They all think I have a cold. I can’t use that excuse for 43 more weeks.

Also, I do notice a bit of trouble catching my breath when I exert myself so my bloods must be dropping. I’ll know after these recent blood tests.

4th Shot

2007-10-13T17:41:00.000-03:00

Uneventful night but woke up with a “take a headache” feeling. I did nothing all day and rested.

Last Thursday was a bad one. I know not to push myself too much because it made me ill. Managed to get into a heated discussion at work with a whining co-worker and it shocked the hell out of her when I came up fighting. LOL This riba has kind of empowered me.

Had my blood tests done on Friday and managed to get a different clerk. She asked the same questions as the other clerk so my pals on the forum were right. The blood lab clerks are asking standard questions because of the type of tests the NP is requesting.
I will NOT give them any information about my treatment. It’s none of their business.

Anyhow, one vein collapsed (my one good one!) and the lady had to stab me again. It was hard to get it to stop bleeding so I expect the bloods will show something this week. I bruised badly where I had the needle stick.

Pumpkin Cheesecake

2007-10-07T18:51:00.000-03:00

Pumpkin Cheesecake

1 cup ginger snap cookie crumbs
½ cup finely chopped pecans
3 tablespoons butter, melted
250 g package cream cheese
¼ cup sugar
½ teaspoon vanilla
1 egg
14 oz can pumpkin
160 ml (small) can evaporated milk
½ cup sugar
2 eggs slightly beaten
1 teaspoon cinnamon
½ teaspoon ginger
½ teaspoon nutmeg

Combine first three ingredients; press on bottom of spring form pan 9”. Combine softened cream cheese, sugar and vanilla. Mix until well blended. Add egg and mix well. Pour over crust. Chill while preparing pumpkin mixture. Combine remaining ingredients. Mix well. Carefully ladle over cheese mixture. Bake at 325 degrees for one hour and 30 minutes or until set. Loosen cake from rim of pan. Cool before removing rim of pan. Chill. If desired garnish with whipped cream.

10-12 servings

Third Weekend

2007-10-07T09:07:00.000-03:00

I gave myself the shot around 8 p.m. Friday night. I was concerned as a bit of the meds leaked out onto the band aid. (not much) However, I knew that I had my shot by the way I felt on Saturday.

Slept OK with no major sides, however, all day Saturday I was zapped. My bed looked better than anything else all day. I forced myself to get up and watch tele for a bit. The thing that irritates (oh oh…is it riba rage) me the most is that I am trying to keep this a secret and the people who know that I am going through this are trying to make themselves feel better by down playing my side effects. They are making up reasons why it’s not the meds. That perplexes me.

I have noticed is that I seem to have a “frog in my throat” and my voice is shaky and I feel like I constantly clearing it. I expect that it’s a side.

The weight is starting to drop off and husband is insisting that there is something wrong with our scales. All I can say is that I asked him to weigh in with me the very first week and he has been weighing in with me every Friday morning and his weight has not changed. However, it took three weeks for him to admit that I am losing weight. Good Grief! My dress pants are hanging off “me ass”!

I am eating better than I have eaten in years. I am gorging on fats (YUCK) and the weight dropping off right now. I expect it will level out soon. I wonder if the meds stimulate your metabolism. I am not active like I used to be and I’m eating like a tank and I didn’t eat like this before so it has to be the fact that the meds rev up the system to burn the calories and fat.

I have a feeling that one of my bosses at work is looking at me oddly. I am not showing the zip that I usually have and I think he may have noticed. I’ll have to buck up and put on a brave face at work.

Major Thanksgiving meal planned for here today.
I hope I don’t feel like I felt last Sunday.

I have a wonderful Harvest Pumpkin Cheesecake recipe if anyone wants me to post it here.

Second Shot

2007-09-30T19:13:00.000-03:00

I injected around 8 p.m. Friday night. The night seemed uneventful, but Saturday I was tired and lazed around all day. Today, Sunday, I didn’t feel great. Flu-like. I hope to get the pins under me for work tomorrow.

Uneventful and I'm Not Complaining

2007-09-26T19:15:00.001-03:00

The days following the shot have been very uneventful.

I misread the riba info on the package and thought that I had to store the capsules in the refrigerator and keeping all meds the right temperature. I thought that my life was totally married to the refrigerator. At least if I get along OK I can transport the capsules in my purse and if I get to dine out somewhere I can sneak the pills in with my meal.

My injection site grew a circle of itch around it today. It wasn’t extreme, but noticeable. Strange that it took days to show itself.

I'm still standing

2007-09-23T19:27:00.001-03:00

This morning I am up and having my coffee. I think that’s a good sign. I’ll take it easy today and get myself ready to face work tomorrow.

The sides hit around 3:30 p.m. on Friday and the night was a night of major fever, muscle aches, headache, vomiting (I know what I did wrong ... two painkillers on a waterlogged stomach just didn't do the trick).

Yesterday I had a headache most of the day that was eased up with my water intake and painkillers. I found the extra strength painkillers the best and even though I’m not allowed more than 2000 mg in a 24 hour period I will not hesitate to take them in the hours of need after the injections. I will just watch that I don’t go over 2000 mg.

This morning I had a nasty little episode that is too impolite to discuss. However, the rest of the day was normal.

I won’t find out if I cleared the virus until twelve weeks from now. I will have my blood taken every week and then at week four I’ll have the PCR done and it will be held until I have a PCR done at week eight and the lab will do them in a batch because it’s so expensive. I hope they don’t screw up. They have been known to do that.

Toast & peanut butter with three Ribas has become my official breakfast for the next 48 weeks. I do not like it. I like cereal.

I’m not a great eater, especially dinner. I have to take two ribas then and I do wonder if I can get away with less meal because I am taking two at that time. Lunch is usually the time I eat, however, it doesn’t work out to be the time that I am supposed to take the pills.

The day was OK and I seemed OK. I did my usual stuff around the house and I seem none the worse. It was rough Friday night and Saturday wasn't extremely fun. I am amazed I’m still standing.

D Day

2007-09-21T14:58:00.000-03:00

We made it to the pharmacy early and paid for the meds. They had to be packed in a huge Styrofoam container so we could get them home. My husband dragged the huge Styrofoam container all through the hospital and when we arrived at the doc’s office the NP noticed us and took us into her office. I was given instructions then I gave myself the shot in front of her. I was out the door on my way to the blood lab within minutes and on my way home by noon.

Self injection … I hesitated and figured I had better bite the bullet and get it done. It was a piece of cake. I have to work up nerve to do it next Friday, again…and then so on.

I’ll see how tonight goes.

Warming Up to a Cold

2007-09-20T20:25:00.000-03:00

GREAT! I ended up with a raspy throat and the beginnings of a cold today. I couldn’t believe it. I probably will NOT bring any attention to it tomorrow. I will probably be sick anyhow I may as well add the angst of tx sides to my personal misery.

If I say it out loud to the NP she might postpone my tx for more weeks. That’s not an option!

Chop Chop

2007-09-19T20:02:00.000-03:00

I had a hair appointment today and I had my hair coloured for the last time and cut very short before the big day. I may as well get prepared just in case I have trouble with thinning hair. Not being able to colour it will be a problem for me. I almost felt as if I was suffering penance watching the swirls of hair falling on the cape and to the floor.

Tomorrow night I’ll go review the CD from the drug company and go through the pretend motions with the fake redi-pen.

Friday is the day.

Anti-d's :(

2007-09-12T05:47:00.000-03:00

I went to my doc to get a script for an anti-d. I started 10 mg of Celexa last night. I hesitated when I investigated the med further when I came home and discovered that it could cause insomnia. The chemist told me last week that it is suggested that it’s taken before bedtime as it causes drowsiness. I waffled for about an hour over taking it before I went to bed and finally I just took it. Down the hatch! Gulp! Gulp!

I am a tad seedy this morning. I wonder how a person feels when they take 20 mg?????

I have no other choice. I have to take it as I figure I’ll need it. All this anxiety, fear and clock and dagger garbage is breaking me.

I am so peeved that I have to take these extra meds, but what’s the point of suffering with this mental anguish along with all the other crap I’ll be subjected to when I treat?

"I guess!" ???

2007-09-08T08:57:00.000-03:00

The long wait for prognosis, genotyping, appointments with specialist, biopsy, appointment with wrong NP following the biopsy and then the super extended long wait to get an appointment to start the tx has worn me down. I believe that if I had of had less time to sit and ponder it I would have been into tx head first.

This journey started with an innocent home visit from a representative from an insurance company who did a physical on December 4, 2006.

It’s been one emotional roller coaster ride since then and I only missed one day of work for my specialist appointment in April.

My reluctance to take time off work for the biopsy last June didn’t help my cause. I had to wait until the first week of July when I was on vacation. However, since a situation that happened at work in June I have come to realize that I work with wieners who take time off work for “farting crosswise” so I will NEVER hesitate to see the doc during work time again. Also, if I need the time off during tx…I will take it. I have copious amounts of sick time that I have accumulated over the years. I’m just not the type of person that abused it and I have always had in the back of my mind…what if I need it! Well, that train of thought came back to bite me on the bum, didn’t it?

This is insignificant, but this is a good place to vent. Yesterday, I was sitting at work trying to figure out how to get to the doc to ask for a new anti-d to try as I came off the one he gave me the last time. I am kicking and screaming with the idea that I have to take anti-d’s for tx.

I was trying to figure out when I could get to doc’s office so I wouldn’t draw attention to myself at work. I realized that it was stupid of me to try to work this around my schedule after work when I just couldn’t get there. It was recommended by the chemist to start an anti-d as soon as possible because the anti-d she suggested takes two weeks to work.

I went into my boss and mentioned that I had to step out for a few minutes if it were OK with him. He had no problem with it because I’m not the type of person who asks for these types of things. I went to reception (out of courtesy) and mentioned to my co-worker that I’d be stepping out for a few minutes and I’d be right back…as I walked away she sarcastically commented in a low voice “I guess!” I turned on my heels and I was LIVID and I responded with a vehement “Pardon Me”! She didn’t answer because she was never expecting me to respond to her like that, but she knew that I caught her innuendo. I was frothing mad. Went to doc’s office only to find he was on vacation. What are the odds of that? I was so upset making that snap decision to leave work to go to the doc that I forgot to call and wasted my time and set myself up for an upset with the little witch of a co-worker.

When I came back to work (and I was gone 20 minutes max) the co-worker was tentative with me and tired to make nice small talk. She knew I was PISSED.

This comment came from the co-worker who misses nearly 25 days a year for one reason or another. She’s lucky I wasn’t on Riba. I nearly “tore her a new a$$hole” without the help of meds. It was so unlike me to react to the snot like that.

It shocked her.

It didn’t shock me as I am severely pissed off regarding my diagnosis and I am ANGRY as hell.

A Friday Start Date

2007-09-07T22:14:00.000-03:00

I received a call this morning from receptionist and my first shot appointment has been changed to a Friday. Well, the plan is in place. Now I have to get through it.

It’s an uneasy feeling signing up to get injected with something that probably will make me sick within a few hours only to suffer it out and get ready to take copious amounts of pills that might make me worse. Then I get to do it all over again the following week and so on for 46 more weeks after that.

Tylenol sounds like it’s going to be my new best friend.

I am going to waste the fifty-second year of my life.

I had so many plans.

They are all in limbo.

Hep C has been a huge set back to me. I cannot let it zap my self-esteem and my perception of “me”.

Upset

2007-09-06T20:51:00.000-03:00

After months of waiting and weeks of more angst of waiting following a hurried call from the NP I get a letter in the mail today with a start date for a Monday.

I was devastated. I asked specifically to start on a Friday as I am going to try to continue working and getting the worst over with by Monday or Tuesday after my shots. (Ever hopeful, here) I had to call leave a voice mail for the secretary and ask for a Friday appointment.

It will probably take months for another date.

I specifically asked NP to give me a Friday afternoon appointment. She sure wasn’t listening. However, she certainly tells me things about myself that she perceives to be true.

It just prolongs the agony of it all.

No Word Yet

2007-08-30T20:41:00.000-03:00

It looks like I'm going to be left hanging for another week for NP to call with start date.

Wheels Are In Motion

2007-08-24T21:57:00.000-03:00

NP called me at work today. She asked me if I were ready to start treatment. I indicated I was ready … “I guess” (meaning I’m worn out with it all right now (December 4, 2006-August 25, 2007 and I have waited so long to get this show on the road) . She indicated that I didn’t sound too sure of treating. She told me that I sounded like “a glass half empty” sort of person. This is the second time she has said this to me in a conversation. She said it to me when she called me back in July. I resent it.

I told her I wasn’t thinking that way, I was just worn out from waiting around to hear from someone regarding treatment and waiting around for a date to start treatment.

It’s OK if I feel like I’m losing my nerve.

I just have to get that first shot over with and get the show on the road. There is no turning back then.

The anxiety of all the hoops I have to jump through to sign up for the possibility of making myself sicker before I might better. The uncertainty of even clearing the virus after all the agony and putting my life on hold for possibly two years is even more daunting…and she thinks I sound like “a glass half empty” person.

Things are in motion and it doesn’t look like it’s next week or the next. She told me she has to set up with several other people before I can get to needle day.

Pharmacists
Bureaucracy
Formalities

I also discussed my dislike of the anti-d’s and she asked me to make an appointment with my doc. Nope! I think I’ll come off them. I’ll take one every other day and then two weeks from now reduce to every three days.

On Wellbutrin (I have been on it since July 20) I am experiencing constant tinnitus, agitation, minor aggressiveness, minor impulsiveness, irritable, anxieties (other the Hep C horror anxieties) and dry mouth. I can live with the tinnitus and dry mouth if that were the only sides, but the rest of the sides are not acceptable. I don’t feel like myself. It will be like using the scientific method here trying to find an anti-d that works. The anti-d sides will be compounded with tx sides. Yipee!

I resent being on anti'd's and I figure I’ll have to be on them when I treat because I’m not doing so well since diagnosed. The Hep C diagnosis has put me over the edge because it altered everything I knew about my self to be true. My whole world dropped out from underneath me and I have become disillusioned, bitter and angry. It totally changed my outlook and my sense of well-being. At least I am aware of this change in my life vision and I am going to proactively take the steps to get back to where I was prior to diagnoses. I will have to have some sort of chemical help to take on the treatment as I know I am in trouble.

I am going into tx kicking and screaming having to take anti-d’s, but I know that I will probably need them.

NP Finally Called

2007-08-23T17:51:00.000-03:00

I am faltering. I am losing my focus and becoming beaten with the anxiety of this waiting game.

However, when I came home from work there was a voicemail from her for me wondering when I wanted to get this show on the road. Gulp! I called back and, of course, had to leave a voicemail with the assistant. I left my work number, but I am very disappointed that NP didn’t call last week when I was home.

I am aiming at next Friday.

Scared ... it's a lonely decision.

Is It The Middle of August Yet?

2007-08-22T19:49:00.000-03:00

Beautiful Champlain Rose

Another Wednesday has come and no date for me to start treatment. It’s pretty bad when the NP assures you that she will call “mid” August and is aiming for the end of August to start treatment. As mentioned before she asked me not to call her. She also assured me that she would call me. It’s creaking past mid August. I came home from work tonight and there is still no notification from her regarding a start date.

I should take out one of the demo needles and practice going through the procedure. Sigh.

Middle of August

2007-08-19T09:41:00.000-03:00

I am very discouraged these days as I was sure that the NP would call me as soon as she received my fax last Monday, August 13, with the medical provider’s approval for treatment. I attached a note asking “ NP, How close are we to treatment?” I expect she couldn’t deal with me last week and I was hopeful to hear from her by Wednesday to set up a needle for Friday.

She indicated in the phone call in July that she would call me the third week in August and aim for the end of August for treatment. Last week, according to my calculation, was the middle of August. She told me during the July phone call “Don’t call me I will contact you.” (Yeah, Sure!) Of course, she didn’t contact me and I was hoping to get my first shot August 17. That just jumps it ahead more at the end and I want to get this show on the road to see if I can do this.

Now I am back to work tomorrow following vacation and I won’t be available for NP’s call. Will she call me at work? I can’t discuss this in depth at work. This just added more stress as I had planned not to return to work after vacation so no one would see me look “ok” on a Friday and then have to call in sick the whole next week while I see how I react to the meds. I’ll be taking a major flu that weekend and won’t have the legs under me the next week.

NP said she wants me to take a month off work. I would have liked to have started the treatment during vacation to see how I rally with it. It didn’t work out.

I have to believe that sometimes things happen for the best. I have to believe that when I start it will be the best time for me to start.

It’s a horrible ominous feeling knowing that I will be getting a needle (plus pills) that will make my first night a living hell.

Picture

2007-08-17T08:17:00.001-03:00

"You can check out anytime you want, but you can never leave"

2007-08-15T08:14:00.001-03:00

Well, I have to stop reading the negative things on the forum. It’s like watching a train wreck; I cannot pull myself away from looking at it all transpiring before my eyes. I want to turn away, but I am compelled to look.

I did this last night.

I read the post about the when someone with hep c dies that it is a biohazard situation for the funeral director and the family is faced with major unpleasant dilemma. I am sorry I read it and I never dreamed that it would be such a big deal. It’s not a nice thought that even though I have a glimmer of hope that I will treat the virus and, hopefully, clear the virus I will still be treated as a pariah the rest of my life and, also, in death.

Not doing too well with my anti-d’s. My husband is noticing that I am agitated and provoking conflict. I am ranting. Yikes! I know I am doing and I have to curb this confrontational change in my personality. I am hoping that it will subside as the weeks progress. I am very worried that when I treat the sides that cause aggressiveness and anger will be intensified ten fold. I will speak to NP regarding these sides I am having and see if there is something else I should be taking, although I did check the sides of the other anti-d’s and they aren’t any different.

Today I made the plunge and had my hair coloured to its original colour. Sniff. I was a wreck doing it as I figured it would be too dark for me now. It turned out OK. Now I have to find a safe brown henna to cover the flaws throughout tx.
Sigh!

Landscaping & Update on Medical Provider

2007-08-13T08:18:00.001-03:00

Update! I received written approval from my medical provider for treatment today in the mail. I immediately faxed it to my NP. I should be close to starting treatment now. I should hear from her this week.

As soon as I hear from her I’ll practice setting up the needle with the two demo redipens that the drug company starter pack provided.

I am into major landscaping these days. The main thing to do is get the grass planted then look at it for a while and decide what I want to do. I have hired someone to do the plans, but I have not heard from her yet. I spent the weekend with Mr. Bulldozer and Mrs. Excavator. I have to make decisions regarding the previous owner’s mature plantings here. There are only a few that I like; however, I do hate to kill the plants. The landscapers will be back in the middle of the week and I have to have a plan. I am trying to use other people’s bushes because I don’t want to destroy the plants.

The previous owners landscaped with a hand grenade.

I cannot get my head around it and, of course, my husband has no vision and cannot understand why I don’t like the stuff that is currently here.

These people did multiples of everything. Three blue spruce in a straight line across the front of the property. Seven bushes lined up like soldiers in a stip across the front lawn like a barricade. They propagated bushes and have three and four of the same bushes placed all over the lawn. It’s colourless and unimaginative and a mess.

As the scrub trees are removed and the soil is smoothed it’s looking good and taking shape, but looking a bit barren.

I’ll have a winter of tx to sit and look at the designers plans for us and then decide what I want to do by next fall.

Waiting

2007-08-07T19:14:00.000-03:00

Waiting.

I waited from December 18, 2006 to January 25, 2007 to get a confirmation that I tested positive for Hep C. I nearly went crazy with the angst and pretty sure that it was a false positive that the insurance company found during a routine test taken early December. The health care system took its good old time to get back to me with the results. It was a real shocker for me and my family. Not a clue where I picked it up along the way in my cloistered life.

Of course, the company refused me the insurance policy that was my first slap in the face regarding the stigma attached to this virus.

Waiting.
I finally get to see a nurse practitioner the middle of April.

Waiting.
Liver biopsy July (excellent, I should add and happy for it)

Waiting.
Treatment

I cannot live within my own skin…I should try and treat to see if I can exterminate the virus.

What a long drawn out process and my patience is wearing thin. I expect the waiting will be much longer while I try to treat. 48 weeks.

I am an emotional wreck over all this along with being angry and bitter as hell. I hope that this anger will subside. I resent the fact that I was busy going along with my own life and had overcome and endured other crap only to get gut punched with this heinous virus.

I’m hiding and fearful that people will discover that I have Hep C.

This evening finally took the wrapping off the DVD supplied by the drug company to teach how to use the redipen. I have had the kit for weeks and I have been hesitant to look at that DVD. Well, I did tonight and it scares the hell out of me.