Sunday, December 28, 2008
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...”
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
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
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 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.
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
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
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
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
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
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
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
My Mickey Mouse attempt at cropping and posting pictures. LOL
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
Kitty with heating pad
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
24 weeks of injections left.
Wednesday, August 6, 2008
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
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
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.
Monday, July 14, 2008
This is an Ivory Silk Tree and I shall have one of these in my garden someday soon.
My hair is the shortest it has ever been since I was 11 years old. I had it cut very short last Thursday. It is a huge improvement over the dry wispy sprigs and it is starting to look much better. I think the “fall out” zone has passed and I do believe that I see some spiky bits popping out along the top. I have many weeks to go to reach the 72 weeks. I wonder if it’s normal for it to start growing back in the middle of treatment.
I overdid it on Saturday night so I paid for it on my birthday on Sunday. I should know better, but I was out with friends I hadn’t seen since September and I didn’t want the night to end. Of course, I didn’t get to bed until 11:30 Saturday night and I “paid paid paid” for it on Sunday. Also, a lady that is helping me with landscaping the property came on Sunday and I spent a long time with her and it was mostly outside. I had lathered on the sunscreen along with wearing a 50 sun block hat and I never even had a singe from being in the sun a long time. Of course, I stood under every tree and picked every shaded spot to conduct my conversations with her regarding each area.
She has the same vision as me and I was just too brain fogged to do it myself at this house. However, after my sickening day yesterday along with my 44th injection last night I feel as if I have something to look forward to in the short term. I can have these landscaping plans to investigate for the rest of the summer and throughout winter regarding the various shrubs and flowers to plant. My husband is preparing the landscaping beds for some fall planting.
The previous owners planted “mish mash” perennials from other people’s gardens and let the weeds take over. It was heart breaking that it was let go as I know if people have grandiose plans and don’t do the upkeep the curb appeal of your home plummets.
The landscaper suggested that in some areas we cover it with tar paper and cover with mulch to see if it will kill it off. I don’t want to get into chemicals, but this property is so far gone I might not have a choice. It would only be one small area as the weeds are noxious there and nothing will get rid of them. The weeds are not the same as the rest and it is assumed that the previous owners had them brought in with top soil. That happens, but you have to be vigilant to pull them out. I don’t want the Canadian thistle. That’s one nasty pain to kill. (if you can!)
Must be something like the virus!
Sunday, July 13, 2008
Tuesday, July 8, 2008
I won’t have any trouble with no cleaning for a long while because I am a dedicated tooth brusher and “flosser”. (Sad, eh? LOL) The receptionist booked me for the first week of March and if I make it through tx I should be four weeks into detoxing by then. However, if I don’t feel well I will postpone it to a later date, but not anymore than a couple of months.
My Mom came on Monday afternoon and we cooked a lovely fresh chicken. She did most of it, but it still exhausted me. I nearly inhaled the meal I was so starved for home cooking. I overdid it that day and I was very ill Monday night with sick headache and seedy Tuesday with feeling ill and a manageable head throb. I’ve only had four of these nauseating “head bangers” since starting tx so I consider myself very lucky.
My new sides:
I am having some trouble with dry mouth and sensitivity to hot spicy foods. I am getting a slight odd taste that I cannot identify and it has put me off some of my favorite foods. I did notice that I dropped some weight, not much because I force the food into me.
My left hip, left knee and wrists are getting stabbing aching pain. My left hip is my worst problem and it bothered me prior to tx, but lately it’s been giving me attitude. I had it so bad one day last week I limped around. It’s tender. I took an ache in my wrist last night when I had a houseful of people and I yelped. They looked at me as if I had two heads. My arthritis acting up, I tell them. LOL
The constant ache on my right side is ever present and once tx is completed the nurse practitioner said she would have the clinic run tests on my gallbladder. I did have tests done at the local hospital and the results were that my gallbladder is working within 74% capacity. She nearly came through the phone when I told her that a month ago. My nurse practitioner didn’t get copies of this test and when I mentioned the constant left side pain, again, and the fact that my test indicated those results in May of 2007 she was shocked. I’ll take a copy of the results to her next appointment.
It’s strange that I would have “the non existent liver pain” (I say that in jest) because I had no liver damage and very mild inflammation when I had my biopsy prior to tx.
It’s nothing I cannot handle. “Bring it on!”
Sunday, July 6, 2008
Tuesday, June 24, 2008
I am worried regarding the fact that I have to try to make it through 31 more weeks of this treatment and the protocol where I live is very rigorous.
I did absolutely nothing yesterday (Monday) and I intend to do very little this week to see if I can have an OK day by the end of the week before my next injection. My husband gets so disappointed when I don’t have the energy to go and do anything as he’s bored with our life right now. Also, because we are eating high fat take-out meals he has probably gained 20 lbs.
It was rough prior to this and just when I thought it couldn’t get any worse, it did.
Monday, June 16, 2008
I’m really getting hit hard following the injections the last couple of weeks and today it’s looking like I shall be in for another low week. It knocked the good out off me prior to this, but for some reason I just think I’m a bit worse and I’m not used to feeling this sick, yet. Pathetic isn’t it? Getting used to feeling sicker, but that’s how this treatment works. Just when you think you have leveled off in feeling sick all the time, tx always comes up with making you feel worse.
I thought I’d clean my bathroom mirrors this morning and I was huffing and puffing when I was finished. It wiped me out!
I’ll go for my June blood tests at the end of the week as I want the results in time for my appointment during the first week of July.
I have 32 weeks to go.
Tuesday, June 10, 2008
I spent the week physically exhausted and even wiping off the kitchen counter, folding sheets, pulling the wet clothes out of the washer were an extreme effort. I was in bed every afternoon so I had to rely on the sleeping pills at night. After the big upset several weeks ago with the NP and my bloods dropping so low I figured I had better take the sleeping pills to get some sleep. I wasn’t too bad for sleeping; however, the NP indicated that my bloods might improve if I get lots of sleep. I jumped on that option train because I don’t want to reduce the riba.
My regular doc wouldn’t fill my sleeping pill script after the NP read me the riot act and I started taking them regularly. That set me off with frustration. I called my doc again this morning and explained to the receptionist that it has been recommended by the clinic that I take these sleeping pills. He called the script into the chemist. I shake my head here with frustration. The medical system is trying to continually cut me off at the knees and I won’t back down.
Friday, June 6, 2008
NP called on Monday morning to see if I have been sleeping better. I asked her about my May hemoglobin and she indicated that it was 9.3…My heart went to my stomach as I thought she was going to take me off one riba a day. She told me that my hemoglobin fluctuated throughout tx and it was still OK. I agreed. LOL
It NEVER fluctuated that low. Crap. I want to make it to the 72 weeks on full meds. I know that the hemoglobin should be low, but I get no reprieve with rescue drugs if I drop too low and they will reduce the riba.
I want to tear everyone in the house a new asshole. I have to keep myself in check, but my reasons are valid and it’s not riba rage. If I weren’t on tx I’d let them have it.
Living with three men and two of the younger ones are absolute dirt pigs. I can handle clutter (to a degree), but I cannot handle dirt and crud. Therefore, I am going to call up a maid service today to see if I can hire someone to come in once a week to clean their mess (bathrooms & bedrooms and major floor slops throughout the house that they are responsible for doing) and they are going to pay for it.
They aren’t listening, but their wallets will listen.
Thursday, May 29, 2008
I was livid and the mess it created for me was horrendous. Needless to say, the clippers have now been thrown out and will never return to this house. He did this before a while back and he was asked NEVER to do it again. Therefore, the clippers are now history. I have to keep myself in check over it all because I am furious and exhausted. I had a full day of vacuuming the dryer and the washing area every load of laundry that was done. The hair went everywhere in the house and it’s a losing battle. YUCK!
I would be frothing furious if I weren’t on tx, but I have to toe the line or my NP will have me committed and tied to a hospital bed if I create any conflict in my household. I’ll tell you I could tear nails out of the walls with my teeth I am so pissed and I am VERY sure I would react the same way if I weren’t on tx.
I have decided over the last couple of days that I am ready for my kids to move out and only come back to visit. LOL
Tuesday, May 20, 2008
It’s daunting from this point to know what is left to be done. It’s going to take a lot of work and I’m determined.
The conflict with the nurse practitioner last week was stressful for me and I spent the days since combating the rash itch. I had it under control and then it went whacky on me again. I expect it was the extra stress resulting from the confrontation and me refusing increasing my anti-d’s along with going full on with major addictive sleeping tabs. I do not need the sleeping tabs every night, yet, and I sure as heck do not need to increase my anti-d’s.
Stopping work has been very beneficial to me and I’m unable to go back for a long while as if everything works out for me I’ll continue to do whatever it takes to remain on this treatment.
I remember discovering my mother was 36 years of age.
My husband always teases me about the trivial stuff I remember and that’s why this brain fog on treatment is so devastating. It hasn’t seemed to hurt my long-term memory at this time so I can imagine that this is what Alzheimer’s symptoms would mimic.
Anyhow, realizing that my Mom was old…lol…that would have been 1962 and I would have been seven years old. It’s odd that I would remember that, but it was the first time that I became conscious that my mother had an age. Over the years I realized that when all my friends would tell me how young my Mom looks I knew it was true. My mom is still a striking looking woman at 81 years of age. Recently, a good friend of mine described my Mom as “pretty”. Imagine, 81 years of age and being described as pretty. Of course, I agree.
My Mom has a love story.
Thursday, May 15, 2008
I thankful that it was my accounting practices that protected me. However, being in a small community the rumours and “rumours of rumours” were flying and the accusing fingers were pointing everywhere.
We had our days in court and he was guilty as charged.
I backed up my shot to Monday night this week and even waited until a later time around 9 p.m. to do the injection. I felt OK these days and managed to get to a clinic appointment by Wednesday that went very wrong in a bad way.
I told the NP a little story about a riba rant I had one day last week and the conversation took a very bizarre turn with her insisting that I increase my anti-d’s and take sleeping pills every night. She took a simple little story I relayed and insisted that I was a tyrant at home and my family was suffering and I would never make it through tx and I’ll end up divorced. (This is the condensed version of her words.)
I outright refused to increase the meds only to have her come back with “I’ll take you off tx!” She insisted that I was refusing to follow her directions and that she would be contacting my regular doctor.
She called this morning an apologized.
Getting through the hoops of fire because of our shitty health care system is hard enough along with the sides of tx, however, this constant feeling that the “I’m taking you off tx” axe is going to fall is too hard.
Saturday, May 10, 2008
I took up walking and lost 18 lbs of baby fat, however, by the spring of that year I came down with a nasty bout of shingles. Here I was a 34 year old woman and I was so rundown I succumbed to shingles. I have had lots of surgeries and pain in my life and even to this day I have to admit that was the worst excruciating pain I ever experienced. I can only wonder how an elderly person handles it when they get it and the nerve pain hangs on forever following the attack. Now there is a medicine you can take to help counteract the severity of the attack, but the biggest problem was getting a doctor to diagnose it. I saw three different doctors over a period of time when it was in the active stage and, finally, one of them took a look at it and diagnosed it as shingles. I just had to tough it out. I think that I could liken it to someone putting a blow torch to your skin and no painkiller would help.
Injection 34 backed up to a Tuesday night. I was feeling so miserable that I was worried that I was probably doing it too quickly, however, I leveled out this week and seem to be getting some better days, therefore, I’ll push on and take my next shot Monday night.
Wednesday, May 7, 2008
I expect this was taken during the month of July in Newfoundland (NOT KIDDING)
Prince Edward Island, Cavendish Beach
Whale Watching, The Bay of Fundy
Monday, May 5, 2008
The heating pad is my new best friend. I cannot even show the bruise to anyone!
Sunday, May 4, 2008
I believe in miracles. I thought I received my one miracle in my life when my first boy was born and now I had two miracles.
This boy is also 6’ 5” with hazel eyes. He’s the athlete of the family, however, struggles with dyslexia. He struggled through school and now works in advertising. I am so proud of him.
I went out and bought the kitty repellent and sprayed it around the bottoms of the window screens. I am only trying a few key areas right now and as it gets warmer I’ll have to go around and spray them everyday and discipline her if she tries to climb up them. However, she HATES the smell of the stuff and gives a wide walk around it so I am hopeful.
I did my 33rd injection on last Wednesday and this backing up shots to get to Sunday night is kicking the crap out of me. My husband wants me to settle out for a couple of weeks on Wednesday night injections, but I’m determined to get it done and not prolong the agony. I may as well bite the bullet and get the shots to the night that I want them. I noticed I have lost many “good” days by pushing back my shot night.
My next shot is Tuesday night coming up and I know it’s going to kick me back again. I could hardly get around last Saturday when I went shopping in Smallville. I had to go out to the car and sit down as I became so sick and exhausted. I have to push it back so I can have some sort of life as my weekends were a write off.
Sunday, April 27, 2008
I believe in miracles. I thought I received my one miracle in my life. However, little did I know that I would be a mom again very soon as I found out I was pregnant again within six months following his birth.
He grew up absolutely perfect (gushing mother here) and he’s my brown eyed handsome 6’ 5” man. He is the musician in the family and plays a mean bass.
This boy broke down on me a couple of nights ago and I should have known how badly this diagnosis and treatment has affected my family’s mental health. He is off to the doctor tomorrow as he might need someone to unload on instead of me. In this family I was the organizer, arranger, doer and always available to take on my children’s and husband’s problems and help them work it out. I’m not doing so good with all that thinking doing stuff now. However, they are not used to me being so exhausted and stupid (LOL) all the time. This tx has hit them hard, too.
This week I finished work. My older boy breaking down with overwhelming despair was the decision maker for me. I’m not going back until I am finished treatment and ready to handle my job. I was feeling useless there the last three weeks and I was dragging myself back for “this reason or that reason” only to find that it was a waste of my health and time. I was working on the days I could function and my family was missing out on their Mom… I was only manipulating treatment to get myself to work so I wouldn’t draw attention to myself by missing so much time. Those martyr days are done. Now I am going to work my injection back to either Sunday or Monday night (I’m leaning towards Monday right now) to give me more time with my family and friends on the weekends. They need me just as much as I need them and I want some normalcy in their lives and I can do that being home full-time for a long while. My mom is 81 years old and I have hardly seen her the last 32 weeks as I am sick all weekends when I used to do stuff with her. That will now stop. It took me a while to admit it, but it wasn’t worth my time to kill myself getting to work.
It’s hard to hide the sides from tx. One of my best friends called today and she is worried that I have something terminal. I assured her that it’s not cancer. As someone on the forum once indicated that most people don’t know about Hep C and wouldn’t know the treatment for it. I had one co-worker ask me straight out if I were on chemo. I answered “Sort of…” and left it at that. Any extensive treatment for many different aliments can be called chemo.
Saturday, April 19, 2008
“You might have a 30% chance of having children, Rose.” The doc responded when I asked him. “Go home and live your life.”
So, I did.
By the summer of my 31 year I was expecting my first child. All the surgery, heinous treatment, heartache and perseverance paid off.
Last week’s shot really set me on my bottom. I was smacked down ill until Wednesday and couldn’t go to work for those three days. I did have an appointment with the NP on Wednesday, but I was dragging my butt getting there.
I discussed some problems I have been having and running a temperature on Saturday & Sunday and the extreme exhaustion the days following were the topics of discussion. She ordered blood tests, chest xrays (which I had done right then) and pushed to get me in to see an eye specialist. I am having very typical sides.
All I know that every week I stay on this treatment is a gift because things can change so drastically and very quickly and I can be hauled off it for the smallest reason.
With this treatment NOTHING is consistent. Things can go whacky in a hurry.
It’s an absolute miracle that anyone completes it.
Monday, April 14, 2008
Turning 30 was the stepping stone into a decade of a total life-style change.
Well, I made it to my 30th injection. New side effects are extremely dry mouth, occasional wavy vision in the morning. The vision thing has happened several times to me in the last while and I think it’s from the bright sun so I have taken to wearing my sun glasses in my kitchen in the morning...
Well, that theory of wearing the sun glasses to ward off the morning sunrise didn’t work today. I have to totally avoid it as it sets my vision off into a blurry wavy mess. The bright lights in the bathroom in the morning set it off the first time. It passes within approximately 15-20 minutes. I think it’s a migraine percolating without the excruciating headache just a head buzz until I take a Tylenol (my new best friend.)
Following the 30th shot I did get a little lax taking Tylenol and ended up running temperatures both Saturday and Sunday evening. It was a new side for me.
Adding up finances for income tax…yippee!
Medical receipts for treatment since the end of September 2007 to December 31, 2007 have cost $ 920.00 with help from my drug plan. If I didn’t have a drug plan it would have cost $ 9200.00.
I usually never make the right choice when given decisions, but I am very thankful that a couple of years ago when I was given the option for the drug plan to pay 80% or 90% of our family drugs that I checked off 90%. I finally lucked out. It will pay off over the next year while I go for the 72 week tour of duty.
I have been taking days off work and I am feeling better on those days. I have a few more things to finish up there and I’ll have to pack it in and try to make the sides a bit more manageable. The chemo brain fog is brutal and I am unable to multi-task. I'm feeling useless there as so many things had changed and happened while I was away on a three month secondment. Furthermore, they changed my computer and I am wasting so much time searching for my old files I am of no use to them anymore while I am on chemo.
Monday, April 7, 2008
What a sense of accomplishment I felt when I walked across that stage to receive my diploma.
It took me until the fall of 1984 to earn status of full-time employee. Meanwhile, I was starting to feel unwell again with endometrioses and by the late fall I had to have another surgery for the same reason. I had to go off work for six weeks to have this surgery. Good Grief! A new employee, a new job and I have to take time off. However, the surgery was heartbreaking for me. My husband and I were married six years and the prospect of having children was dim. I was having so many problems and this second surgery didn’t have a great outcome. The surgeon had to remove one ovary, tube on one side along with a chunk out of my other ovary. Furthermore, he wanted me to take the steroid type drug that I had taken for a full year following the last surgery. I made it to six months with the meds and then I threw in the towel. I was war weary following two years of surgery and recovery. I just stopped taking the meds as the sides were not great, but I just lost hope.
Friday night I injected the 29th shot of interferon. Since that night I have read on the forum not to pre-clean the injection site with that alcohol rub, but clean it with antibacterial soap. My skin is in really bad shape around the stomach area and I had a light bulb moment when I realized that the irritation is probably from the alcohol. I thought it was from the actual injection, but it only stands to reason that alcohol is drying and irritation and I was slathering it on my stomach. I have to wear a latex glove to use the alcohol pads because they dry my fingers out terribly; therefore, it’s doing the same thing to my stomach.
Saturday I was down for the count with a headache, flu like (mild) symptoms and major fatigue. I wasn’t great the whole day. I went shopping with friends on Sunday afternoon and I was OK, but not great. I just pushed through it. They were commenting on how much better I looked and it was because I had taken Friday off work and it makes a difference in me when I’m not working.
I didn't go to work today (Monday) and I will be taking one day off a week for a while.
I’ll push it a little longer, however, my days are numbered at work.
Sunday, March 30, 2008
The summer I turned 28 was a summer of change for me. I had just spent the year from hell recovering from surgery and steroid type drugs to counteract the symptoms of my girlie affliction. That was not fun. I was working in a “nowhere” sales clerking job, bored to death and hating every minute of it and paid nothing to boot.
I decided to return to college that fall and finish my program. It was a long hard year of being a full-time student and my poor husband managed to work himself into a stomach ulcer from the extra stress of being the sole breadwinner.
Well, I did it and it paid off 100 fold for us.
Shot 28 was completed on Friday evening and I am trying the injection pattern suggestion that came from the forum by treating the stomach injection area like the face of a clock. I am sorry that I didn’t heed that suggestion at first. It works and my frantic itching has been manageable since I’m not injecting in the same six areas. I also use copious amounts of moisturizer several times a day to ease the alligator skin that has formed around this area. This tx is brutal and my once OK skin is so dry and rough that I probably could hang a sweater on it. Also, I look like one of those wrinkle pups as I have lost so much weight along with not doing exercise the muscle tone is nil so it just hangs there.
Yesterday, I did some major furniture shopping. MAJOR. I’ll take pictures and post them once the pieces are delivered over the next few weeks. A couch, chair, antique white table and sideboard and black vase will complete some of the empty areas of the house. We dragged one table and the black vase home. I haven’t the energy to wash them down today. They will have to wait.
My husband and I also met up with friends who haven’t seen me since November 2007 and they commented on my weight loss. Also, my friend is a hairdresser and, well, you know…my hair looks like crap (what’s left of it).
I was also into my old workplace last Thursday and it has been weeks since I was there. Several co-workers commented on how exhausted I looked and that I had better get out of the secondment as it’s too much for me. Little do they know. Along with that one co-worker squawked about my eyelashes and how long they are…can you imagine! I couldn’t believe that she noticed it. She will rant on about that and send people down to look at me when I return in a couple of weeks.
My days of working full time are numbered. I feel like I have taken it to the chin long enough. Time to look after me. I would have taken more time off this past year, but because I have the 72 week tour of duty I have to hang in these days as long as I can to keep my sick time for the last 36 weeks of treatment. I don’t think I’ll make it to the 36 weeks working full time. I’ll have to worry about those days at the end when the time comes. I’ll hardly care I’ll be so happy if I make it to the 72 weeks.
As terrylee8 suggested …keep repeating the mantra…”I’m undetectable, I’m undetectable, I’m undetectable…”
Saturday, March 22, 2008
On a lighter note, this being Easter, I should write about my first childhood memory. I had to be very young (later 50’s) and we took a rare family trip to visit friends of my parents. These friends owned a store and I can remember being carried into the store in my Dad’s arms and he pointed out a huge chocolate Easter Bunny. I was in awe! I never forgot that huge chocolate Easter bunny and I wished for one of my own. I never asked for one until I was older and Mom managed to get me a hollow Easter chicken. Crap! I wanted the bunny that was nearly as huge as me. LOL Hey, I was lucky to get the chicken!
Well, shot 27 is done and the two worst sides are fatigue and now I am plagued with major itching. Layers and layers of different creams, cortisone (used sparingly), anti-itch creams and the occasional antihistamine are only giving me temporary relief. The hair thinning is bad, but it’s more psychological than a real problem. I use the Nioxin product for thinning hair, but as one forum member indicated when I first started visiting the forums…”It doesn’t matter what you do, what product you use, if the tx is going to make your hair fall out or thin drastically, it will happen. You cannot stop it.” She was right.
Tuesday, March 18, 2008
Saturday, March 15, 2008
I had blood tests done yesterday scribed by my local doc to see if my week off work helped my WBC & HGB, etc. I expect he’ll go into panic mode when he receives the results.
I am still waiting for word regarding my 23 week PCR.
Sunday, March 9, 2008
After recovering from hepatitis C
by xapbkob, Mar 07, 2008 04:20AM
I am dating a woman who had Hepatitis C. She was able to recover from it and says that she does not have it anymore. What could I expect if I to marry her? Will I have to use condoms , or will we have problems having children? Is there a possibility for anyone to be infected from her?
Mar 07, 2008 07:48AM
If you have found life partner who has cleared hcv, you are a truly lucky guy. People who have battled and beat this disease display traits that are not only admirable but necessary for success in life. They demonstrate commitment, fortitude, a sense of purpose and an understanding of the difficulties of achieving a difficult goal. The real question that you should be asking is if you are worthy of such a person.
I was, as the Brit’s would say, chuffed to the buttons when I read this response from FI Guy. I perceived this to refer as anyone who has gone through treatment (male or female) and gave it their best attempt to clear no matter what the outcome.
I can only hope that I make it 72 weeks through this journey.
Waiting on my 23 week PCR results and that will tell the story if I am to continue with treatment. It will be a wait!
Shot 25 this week is completed.
Saturday, March 1, 2008
I don’t even remember where he is buried and it’s somewhere in this shire. It has horrified people when I admit this to them.
“Old Man, look at my life, 24 and there’s so much more…” to quote Neil Young. I noticed that JB quoted Neil Young in a post “long may you run…” I managed to see Neil in concert years ago and, unfortunately, it was during his country music mistake. He did play his classics, however, the warm up group was The Judd’s. Naomi Judd is a great advocate for Hep C here in North America and I think back to that concert and now I know that many people sitting there were carriers of Hep C, but didn’t know it...me included.
I’m babbling today.
Consequently, if I am allowed to continue I shall be 1/3 through my treatment. I am waiting for a PCR test result and I expect it will take weeks to receive the results. My bloods took a drop this last month and I am waiting to hear how my HGB is doing. I know that my WBC is low as the nurse called and indicated that on Wednesday.
She thinks I’m “overdoing it” However, I figure my HGB is lower as I am getting mild headaches by the end of the week and yesterday’s headache was enough to take a couple of Tylenol throughout the day. I am dizzy and exhausted so I have been trying to rest. I cannot do much else, but I would force myself to do things and now I’m not. There are toilets to be scrubbed, sinks to be cleaned and I just cannot do it right now. I think I’ll hire someone.
I am going to try and get copies of my recent tests from my regular doc.
Saturday, February 16, 2008
I was like a deer caught in the headlights because I had no way of talking my Mom out of it. I tried everything, but she was hanging on because she thought my brother was able to attend so she wanted to keep the idea going. My sis who knows what’s going on tried to put the brakes to it and, finally, late Friday night I got the call that I was pardoned. It wore me out as I didn’t want any family dinners until Easter and it would be easier for me to recover on a long weekend. Christmas dinner for 12 was exhausting and I was off on vacation several days that time.
Here’s the dirt on my three month position. I have been so upset lately and I’m just doing my time until I get back to my regular position the end of March. I signed up for the short term position and given a verbal claim that they would pay me 10% more than what I was making at my previous job along with travel reimbursement. I didn’t think was much, however, I was going for the learning experience and the possibility of “phased retirement” where I could do these audits part time.
I knew it was a non union position and only temporary, however, I still had protection of my seniority with union for this short term.
Prior to taking this position I was an eight hour employee and was shocked when I received my pay that I was reduced to a 7.5 hour employee. Apparently, they neglected to tell me that it wasn’t 10% more on my gross wages, but 10% more an hour. I tried to get this all in writing at the first before taking the temporary position and would email people and they would call me back with the info and not answer the emails. I was hesitant and I should have gone with my gut feeling that I needed this in writing. However, being a 24 year employee I thought that it was straightforward because others had done it before me. However, these were new non-union positions that were temporary. Management adjusted the positions to suit them and save some money. Anyhow, I’m taking home the grand total of $2.92 extra on my pay a day and I’m still working eight to 8.5 hours a day. What a joke. Therefore, I am not ahead financially. Also, I find out yesterday that they are going to “dick” me around on the travel claims.
The main boss called me when I kicked up a stink about it and didn’t want me to leave the position and go back to my previous job. He indicated that it was his error and he didn’t calculate that I was an eight hour employee and even though he couldn’t pay me eight hours I am to keep records of the extra time worked and he would see if he could compensate me in the end. This, of course, was verbal. (also a crock of shit) Unfortunately, my site boss has to sign off the extra hours. What a joke. He’s hardly there when I am there and he’s not home with me at night and on the weekends to verify that I am doing work for my employer. I am keeping records for myself only to use for ammo if they ask me to do this job again. I stayed in it because there were other people depending on me to complete the job. There is a casual employee at my regular job and I want to keep her trained in case I have to go on work reduction or if I get too sick on treatment. This should benefit me in the long run, but things don’t usually work out to plan. I also stayed on the job because it vented my anger elsewhere and kept me preoccupied and not thinking about my treatment, but my site boss is wearing me down.
My boss is scattered and disorganized and I have no clue why this person has this job. He doesn’t know how to prioritize his work and doesn’t complete tasks when he should. The brain fog was bad for me last week and being with a disorganized person wrecks me. He gives me stuff to do then either changes it or moves parts of it from the filing system when I need to retrieve the info. Not good when you have your wits about you … even less productive when you don’t on chemo.
Thursday I organized it so that I just had to stop off at the main office on my way through to do an audit at another site on Friday morning. I wanted to get to the site early and get it done. My boss and I conflict on work times as he procrastinates getting to work. I get there on time and still stay late because he keeps me there. It doesn’t matter when I come into work it just never works out and my goal is to get home by 5 to take my meds with food.
My boss is not very organized, but I have to depend on him for reference documents for the audits as I don’t have access to the info. When I rushed into my office in the early morning I discovered that Mr. DISORGANIZED didn’t have my stuff prepared that he indicated he would have ready in the early morning I was frothing. He left me a voice mail to inform me that he opted to go home the night before instead of staying to do the required print offs. It would have taken him ten minutes throughout the day to do it. I felt like biffing all my organized stuff from my car (that I dragged out the night before and dragged home which is heavy and exhausting while on tx) off the side wall of the main office I was so livid. I was frothing and I had to keep myself in check. He rolled in around 9 when he should be there at 8:30 a.m. I hate depending on him to complete my job as it makes me appear inefficient. He won’t get his money’s worth out off me because I am there to reduce his workload and he’s not helping himself much by being so disorganized.
Anyhow, he left at 1:30 p.m. Friday to do a personal thing and I was left without the audit completed.
It’s the meds and I have to be very careful that I don’t get dwelling on how sorry I feel for myself. I did get very low yesterday.
Therefore, I am doing nothing this weekend and going no where. I feel ok early this morning following my 22nd shot, but that doesn’t predict the day or the week.
I’m trying to calm down.