Monday, February 23, 2009
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.
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.
RR
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
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.
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
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.
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
62,63,64
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...”
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...”
Sunday, November 16, 2008
Have I reached acceptance even though I have no proof?
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
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
Friday, November 14, 2008
Injections 60 & 61
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!
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!
Sunday, November 2, 2008
Nurse Giving Me Some Attitude & WBC Critical #59
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.
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.
Sunday, October 26, 2008
#58
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.
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.
Monday, October 13, 2008
Weeks 53, 54, 55, 56, 57
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.”
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.”
Monday, September 8, 2008
Injection 52
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.
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.
Sunday, September 7, 2008
Injection 51
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.
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.
Tuesday, August 26, 2008
50th Birthday - Tiara
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.
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.
Wednesday, August 20, 2008
49 - Melanoma
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”!
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”!
Thursday, August 14, 2008
48 Weeks + 24 More
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.
24 weeks of injections left.
Wednesday, August 6, 2008
47 - Trip to Oz and Mom Remarries
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.
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.
Thursday, July 31, 2008
46- My Mom's Love Story
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.
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.
Thursday, July 24, 2008
45 - Trip to New Orleans
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.
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.
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