Sunday, January 25, 2009

Haggard & Hollow-Eyed Injection 72

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.

Sunday, January 11, 2009

# 70

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.

Sunday, January 4, 2009

Injection 69 This Evening

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.


Sunday, December 28, 2008

Week 67

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.

Tuesday, December 16, 2008

Injections 65 & 66

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.

Tuesday, December 2, 2008


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...”