Tuesday, December 27, 2011

A Happy (but Tiring) Christmas

I hope everyone had a wonderful, happy Christmas and that Santa brought you all what you wanted and deserve!

We had a quiet, but very happy Christmas here and although my fiancé was completely exhausted by the end of the day, he made it through with flying colours and even managed to complete his magnificent mashed potatoes for our dinner. Just like Thanksgiving, I did pretty much all the cooking, but he really wanted to do something, and no one makes mashies like him! So, he got himself situated and was able to do some prep work and finish up the potatoes. His daughter joined us for dinner as did my brother, so it was a lovely dinner. We figured out that the computer chair helps his back so much better than the usual chair at the dining table, so we swapped that out and he had a better day because of it!

So, still no tranfusions. He's been getting the Aranesp shot and that seems to be working well; his numbers are climbing slowly. We both look forward to the day when he will not need either the shot or the transfusions.  His weight is still a bit up and down; last weigh-in he was 181. I'm just glad it's not plummeting like I thought it would, but he is making a very conscious effort to eat one good healthy meal a day.

There are virtually no side effects/symptoms still and the hair loss seems to have either slowed down or stopped. He has lost a LOT, but I don't see it all over the bathroom floor like I was for a few weeks there. So, besides that we have the anemia (which is still improving) and the anorexia (which he is making sure to keep under control).

His gout is under better control since Dr. Goldberg told him he could go back to his full dosage of colchicine. He was originally told to cut back almost completely due to the drug interaction, but at last visit Dr. G said it was fine to go back to the original dosage. He said it was most likely the Incivek and since my fiancé's done with that he should be okay.

I wish everyone a healthy and happy New Year! Be safe, be happy, and be well.

Tuesday, December 20, 2011

Going the Distance

Visit with Dr. Goldberg yesterday and he is definitely pushing my fiancé out to 48 weeks. Or at the very least, 36 weeks. I'm kind of disappointed because of the toll the meds have taken, and are still taking, on him. But, he feels good about going the distance, especially if it gives him that sustained viral response. Any chance to make sure the virus is dead we'll take.

Dr. G decided to do 24-wk tests yesterday (we've actually started week 21), but he's so excited and is fully expecting the results to be "undetectable" that he wanted to go ahead and do the tests. He expedited the results as I expect he wants to give my guy a Christmas prezzie!

He is Dr. G's first patient to be finished with a completely undetectable response and has the lowest toxicity of any of his other patients. He's been that lucky with the lack of side effects!!!

Side effects/symptoms:  hair loss, anemia (better, no blood transfusions in the last 3 weeks), anorexia (from Riba - but he's very conscious about eating well).

RE: back surgery and follow-up ~~~  baby steps for sure. We found out today from his surgeon that it will take at least 3 months for the nerves to begin to be healed and a full 18 months to be completely recovered!!  So now, PT is in the cards and I know it ain't gonna be fun.  But it'll be worth it. Today was the first day in 3 months that he walked through the hospital without a wheelchair. He was exhausted this afternoon, but I'm so proud of him and I think it's a great start!

Pegasys shot tonight!

Friday, December 16, 2011

One Step Forward


My fiancé is feeling a bit better. Less pain from the surgery and walking around better and better. Unfortunately, still having that temporary paralysis and I've seen it twice. Once it happened when he was right next to me, and I couldn't catch him in time. The other time was the other night, and I heard a big thud coming from the bedroom. Went in to find him crumpled on the floor trying to get up. He'd hit his head on the wall unit as he fell (just scraped it really -- no blood) and it broke my heart. Nobody seems to know why this is happening.

Re: the Hep C ~~ still doing wonderfully with that. Still losing weight, but he's in good spirits. He's forcing himself to eat dinner with the fam, so at least I know he's getting some nutrition and I always try to make a nice dinner so it's not just us grazing here and there.

No recent transfusions. His blood levels are getting better, but now he has too much iron fromt he previous transfusions, so when his hemoglobin drops below a certain number (they keep changing it), he gets a shot of Aranesp.

His gout is acting up again; they knocked down that medicine because it interferes with the interferon (lol) and that unfortunately increases his uric acid, so very uncomfy for him. And still experiencing the hair loss. Very depressing for him ... he's always had lots of hair even at his current age. But, they say it will come back!

Appointment with Dr. Goldberg on Monday (12/19 <----- can you believe this month is almost over?????!), so I'm sure that will be a good visit.

Looking forward to a nice quiet Christmas and hope everyone else is looking forward to Christmas or whatever you happen to celebrate this time of year. Plus, we're very excited about seeing our Boston Celtics on TV this weekend. We're big basketball fans (he was a bball star in high school!) and we've been missing it, so go Celts!

Tuesday, December 6, 2011

Not much change all around

My fiancé's anemia is better. He hasn't needed a transfusion in 2 weeks! The anoriexia due to the Riba is still working and he keeps losing more weight.

Current weight = 178

Hair loss seems to be less; not sure why. He's taken to wearing hats all the time now, even in the apt. If you didn't know what he looked like before, you would know that he's losing his hair, but I can see it when I look at him and just look forward to the day when it begins to grow back!

Pegasys shot tonight...so far, so good. There's been no side effects from that in the recent months, so hopefully we'll keep going with that record.

It's been just over 3 weeks post op and my fiancé's experiencing less pain from the surgery, but is now having some kind of weird temporary paralysis. He'll be standing or walking and all of a sudden his knees buckle and legs give out. He's fallen down the stairs twice and I've caught him a couple of times when it happens in the apt. His doc doesn't know why, so we sit and wait till they figure it out. His spirits are pretty low, understandably. I've given up praying as they don't seem to be answered by the man upstairs. So, we're hangin' in and hoping for a solution or a clue at least from the doctor. I'd hope they'd give him another MRI to see what's going on there.

His gout is kicking up a bit, too. His feet are sore and achy. He rests them when he can and we just pray that the flare-ups stop and things even out with the feet.

Tuesday, November 29, 2011

All Turkeyed Out!

Well, we made it through Thanksgiving! It was a very quiet day since my fiancé is still in recup mode after the surgery.  I had to buy a huge turkey just for our small family 'cause that's all they had. But managed to send the brother and my fiancé's daughter home with "care packages" which they LOVED. My fiancé felt bad that he couldn't do anything this year. I prepared the entire meal as well as did the cleaning and set-up that a holiday usually requires. I'm exhausted but I tried to see it all as my workout!  ; ) 

The food was delicious; everything was timed perfectly; the company was top-notch; and everyone enjoyed their day. My fiancé was completely knackered by the end of the day. It was the longest he'd been up and active since before the surgery. But we made sure he rested the next day and that did him good.

We had a follow-up visit with his Neurosurgery nurse yesterday (f-u with doctor in 2 more weeks) and she said he was doing well. V disappointed that he hasn't quit smoking, but she kind of joked about it a bit to not make it so serious. They quickly discussed his possible neck surgery (yes, there are 2 more bulging discs there) and the nurse said there is no way the doc will do surgery if my fiancé is still smoking. Period.

Anyway, she said he's progressing nicely and is not surprised at his current level of pain, so that made me feel better. He's been experiencing a sort of paralysis periodically, when he goes down or up the stairs. The nurse was a bit concerned, but felt that could be part of his recovery (everybody IS different). Hoping the PT can work with him on that. BTW, the PT is wonderful. A guy named John who my fiancé likes and gets along well with. Hoping he can encourage my fiancé with his exercises and help him stay positive.

Now, regarding the Hep C.....still doing v well I have to say. The main symptom that we're currently seeing is that pesky hair loss...and now he's taken to wearing a baseball hat, even in the house. Also, the anorexia has kicked in (from the Riba) and he's lost 6 pounds in about a week. Doctor Goldberg said that now he's off the Incivek, the anorexia may start to rear its ugly head, and so, it would seem it has. My fiancé's self-esteem seems pretty low these days, too. He's also not sleeping well.

Current weight = 182

Now trying to gear up for Christmas. Might have to go out and get the tree by myself this year. He's hoping that he'll be feeling well enough to come along. We'll just be going to the Home Depot where we got the tree last year; a small one ... just enough to light up and enjoy for the holiday!

Monday, November 21, 2011

Triple Threat Week 16 + Post-Surgery Week 1

First of all, I can't believe it's been one week since my fiancé's surgery. This week has gone by so quickly, yet so slowly at the same time....weird. Surgery went well; then one night in hospital. He was so ready to come home the next day, which was a good sign. The only issue was that, once he was given the okay to leave, not one nurse came and saw him to either check on him or give him meds. He went 4 hours without meds (and he's on some narcotics due to previous back surgeries). This would be evident by the end of the day.

We finally left at 2pm and got him home and comfy...ish. He managed to get to the bedroom and lie down for a few hours. Turns out that was not the right thing to do. He went right to sleep, without walking around much or using his new breathing excerciser they give to everyone who's had anesthesia (the night nurse called it a "bong" ... to help indicate which direction the breathing should go --- SHE was awesome...thanks, Cathy).

Within 2 hours, he complained of being hot and then proceeded to stress about it. His temp went up to 102; they told us if it went up to 101.5 we should call the doc's office. However, this was about 6pm and the office was closed (I later learned there's someone answering the line 24/7 and could connect us to a doctor immediately). We tried cold compresses, ice bags, turned on every fan in the apt...to no avail. He also had very bad tremors in his arms and hands which scared me. Finally, realizing I was not equipped to handle things, I called 911. They were here within 5 minutes, took a look at him and suggested going to the ER. They wanted to go to the Mt. Auburn hospital, which is the closest to us, but we insisted on Lahey Burlington since he was just discharged from there. They got clearance to do that and off we went, my fiancé in the ambulance and me in my car. I actually passed the ambulance on the highway and got there just before they did!!

The EMTs had hooked him up to an IV in the ambulance and by the time they got him settled in the ER, his temp went down to 98.6. My fiancé's tremors, come to find out, were due to the fact he never got his pain meds today. He had his regular morning meds, but nothing before being discharged and only minimal once at home. So, basically, he was having withdrawal from narcotics. That was pretty scary I tell you!


We were there for 5 hours and his temp went down to 98.5, then as they discharged him from the ER at 11pm, his temp went up to 99.5. I was a little nervous that it had gone up a bit, but we went home after the ER doctor (Dr. Gendreau) said all his blood tests and the x-ray they took were normal. He added that if my fiancé's temp went up to 101.5 again, we should come right back in to the ER.

So, at 1:45am his temp hit 101.8, so off we go. This time, they put hime in a bed and left him there. No one took his temp, BP, or any vitals. At 3am they said they were re-admitting him to the hospital as a patient and were just waiting for a bed. So they moved him over to a corner cubicle and shut the lights and the curtain. He slept right away, but I was awake for another hour or so. I nodded off in the chair and waited for daylight.

When 7am came, I talked with Patty, the day nurse, and she sorted us all out. She seriously got the ball rolling and even managed to get his surgeon to come down to the ER to see him! After a long chat, the surgeon still wanted to admit him, but my fiancé said he'd just like to go home, with the promise that if the temp went up again, we'd call.

He rested at home, but managed to do a bit of walking and made sure to do his "bong" exercises as scheduled. He's been doing a bit better every day. Visiting Nurses are going to start coming as of today, so that will help him a lot, I think.

The bad news: He started smoking again. He was freaking out on Friday night about nothing and said I was the cause of his stress...."leave me alone" were his exact words. He found the cigarettes he'd hidden and went outside to smoke. Granted, he's only smoking a few cigs a day, but that's more than none.
The good news: He's asked for help to quit smoking...something I NEVER thought I'd hear! So, we're going to get help for him on that. So glad.

The next few days were mostly good. He got stubborn and went for a few short walks on his own....didn't tell me he was going, just kind of left while I was in the bathroom or the kitchen. That bothered me, but I didn't say anything. Gotta pick your battles, right? Then, the next day he paid the price because he was very sore and tired. I feel like he's getting there, though. The pain is different; no more fevers; he's sleeping better.

Thursday, 11/17, was his 16-week follow-up with Dr. Goldberg. Great follow-up! The Doc was surprised to see my fiancé there just the few days after surgery. It was more of a meeting with Q and A than a doctor's appointment, but that's a good thing. We gathered and gave info and Dr. G is still pushing for the full 48 weeks of treatment. Maybe...MAYBE we can go 36 if all the signs are right. The fact that my fiancé is a Stage 3 has a lot to do with the length of treatment, so we hang in there! The Doc also mentioned that now that he's off the Incivek (and off the 20g fat snacks), he should begin to lose more weight. Apparently Ribavirin causes anorexia and therefore the extreme weight loss.

CURRENT WEIGHT = 184.8

Also, on Thursday, blood tests and yes, the transfusion. I think it was mostly due to the surgery and minor loss of blood, because they only gave him one unit. And that went well.

Whew!  Sorry for the long posting, but I had to get that all out!!  Looking forward to prepping for Thanksgiving. Even though I'm still without a job, we truly have some things to be thankful for this year, because everyone's healthy!

I hope everyone enjoys a beautiful, joyous Thanksgiving. Remember to eat LOTS.... I think it's the law now!   ; )

Monday, November 14, 2011

Surgery Day

So much has happened in the last few days since my last post. It almost feels like "A Christmas Carol" and my fiancé is Ebenezer Scrooge! Was he visited by 3 spirits one night while sleeping? I don't know. I do know this:
  • He's sweeter than he has been in a few weeks    : )
  • He's taken himself off of most of his pain meds (and there were some scary withdrawal symptoms during the weekend)
  • He's STOPPED SMOKING!!!!!!  (yay)
Initially I think all the advice and concern from the nurses and doctors on Wednesday went in one ear and out the other, but maybe some of it stayed in his head and made him realize what he had to do. He's one of those people who HATES being told "you have to do this" or "you have to do that". If it's something that's HIS idea, he takes hold and runs with it. In the long run, I suppose it doesn't matter whose idea it was.........he's made a HUGE change in his (and ultimately our) life!

Surgery today.....I'm letting him sleep as long as possible, because he can't eat anything. At the hospital at 10:30a and surgery at 12noon. One night in hospital and home tomorrow.

I have been praying (not that THAT's worked for a long time) that his pain from the herniated disc is gone immediately. He'll have some residual pain, but I know he can deal with it.

Am looking forward to my first good night's sleep in I don't know how long. It will be our first night apart in two years, but it will be good for both of us. I hope this is the start of a new chapter in our life together.

Thursday, November 10, 2011

The Sh*t Has Hit the Fan

Several pre-op appointments yesterday....went fairly well. Everyone who saw my fiancé asked about his smoking and all suggested he quit, stressing how important that was not only for the surgery, but also for his quality (and length) of life. In one ear and out the other. After speaking with the Neurosurgery nurse, Tracy, who'll be in the OR with him, I really thought she got to him. She got to me for sure. She told him that if he keeps smoking, he's going to be coming back for surgery on all the remaining discs in his back. Granted, this situation was from the car accident, but he doesn't realize the connection between smoking and the deterioration of the human body, or between smoking and pain.
We had been planning to drive up to NH to get his cigarettes (they're much cheaper up there...and no tax of course), but I thought the conversation with Tracy would've changed his mind. Imagine my surprise when he mentioned he wanted to go up there as soon as we finished with his chest x-ray (last thing on the pre-op list), I went numb. We were civil to each other on the ride up ... I knew he could sense my disappointment ... but I tried to push that all away and get on with the day. One of the nurses thought he should meet with his Primary Care doc before the surgery and managed to get us an appointment later in the afternoon. He was happy....he could talk to her about getting more meds to deal with the pain, since he'd taken just about all his prescribed pain meds for the month.

While meeting with the PC, she reviewed all meds, gave him a quick physical exam and then she asked about his smoking. The hammer fell. She basically told him if he continues to smoke, he will die. Plain and simple. With all his other health issues, I would agree that smoking compromises everything. He was supposed to stop smoking at the beginning of Hep C treatment and that deadline made a nice whizzing sound as it went by.

Then the meds discussion. She couldn't give him more because he'd overused them and that's just the way it is. She read him the riot act on that and came right out and asked me what I observed. I lost my composure at that point and told her what I knew; I know she saw how scared I was for him. She told him outright, he's going to have to find a way to deal with the pain until the surgery and hopefully, make it through the rest of the month. Once the surgery's done, that acute, stabbing, hot knife pain will be gone, but the residual pain in his leg will be like a headache or a black-and-blue, so I hope that can be managed with Tylenol.

He smoked several cigarettes on the ride home from the hospital, and not one word was spoken; I can see that familiar pattern of turning inward; a slight depression I'll keep an eye on. The minute we got home, he jumped into bed and went off to sleep. It was an exhausting day. I sat in a chair in the living room and promptly fell right off myself. Woke him up at 8pm to take his Riba and all he could stomach for food was two bananas. That was fine (thank God we're not in Incivek Land anymore .. a 20g fat snack wouldn't have made any kind of appearance last night). I don't know what he took for pain, but I don't think it was much. It was lights out for the night at 10:30pm (HUGE surprise) and NOT ONE CIGARETTE since we got home (an even BIGGER surprise). Not sure how long that will last. Maybe he finally got scared straight.

I know he should quit smoking for himself, but all I can (selfishly) think is, "Why doesn't he care enough to take care of himself for US?" I thought finding each other after 30 years apart would be enough to make him want that. I guess it's not. The way things were when we left the hospital drilled into my head that it was okay with him if we spent the rest of our lives together with him in a wheelchair and me wheeling him around everywhere. What will happen the day he truly can't walk? Or worse, if I have to bury him sooner than either one of us plans. I'm so scared about that, but I have to push those thoughts out of my head or they will consume me.

Today, it's blood tests to see if he needs a transfusion and then a visit with his Hematologist to review his blood levels and a final check before surgery.

Pegasys shot on Tuesday night was fine; no symptoms/side effects yesterday at all, so ... yay.

He's still losing hair; it seems to have gotten worse over the last week, and I'd be will to lay money down that that's not only from the treatment, but also from the smoking, worry, and stress over the upcoming surgery.

One weird note from yesterday regarding his weight. In the first visit in the morning, his weight was 194.6; at his PC visit in the afternoon, his weight was 188.6...he lost 6 pounds during the day.

Wednesday, November 9, 2011

Countdown to Surgery

Well, to catch up, Hallowe'en was a blast! It was fun having everyone sit down to a fun dinner and have some laughs.

In all the excitement, I forgot to get a pumpkin and anyone who knows me would say "impossible!' to that, but there it is. So, I had an orange, and scraped that out, carved a few features and stuck a tea light in it!

Then for dessert, we had black cat cupcakes!

In the week-and-a-half since Hallowe'en, it's been a struggle, for everyone. First, regarding my fiancé's Hep C, things have been great. Really, no symptoms, unless they're being masked by the tremendous pain he's going through because of his back. But even if that's the case, they would be very minor. Things like his sense of smell (there was a while there I couldn't run the dishwasher because the smell of the detergent made him sick) and taste (that horrible metallic taste) are back to normal, which is great. The only real side effect I can see is his hair loss. Now, you have to understand that he's a musician and back in the day, he played (guitar) with some very prominent rock musicians, so his hair is part of who he is. So, it's pretty depressing for him to notice that hair loss. I keep reminding him that it WILL grow back, and that does help in the moment.

Regarding the anemia: it's been better since being off the Incivek, but he's still had a couple of transfusions since then. He's scheduled for blood tests tomorrow to see if he needs one this week (he was cleared last week and didn't need one then).

Now, to his back. The pain from the herniated disc had gotten so bad, that he finally relented and let me take him to the ER and then an emergency appointment with his neurosurgeon. The doctor said the best course was surgery, but he needed a medical clearance from Dr. Goldberg because of the Hep C. I remember reading that you weren't supposed to have surgery while on treatment and I believe Dr. G said that same thing just as my fiancé began triple therapy. But while at the hospital, we went down to Dr. G's office to have a chat. All the nurses there basically said, NO, he can't have the surgery while on treatment and he can't stop treatment. I wanted to die right then and there and knew there was no way he'd last another 12 weeks. They said they'd give Dr. G a message from me and have him call me back. Two days went by and the pain became worse and worse. My fiancé got weaker in his legs and because of that, actually fell down the stairs on his way out to smoke. I know....this WOULD be the perfect time to quite smoking, but that's not in the cards right now. He scraped his head on the metal railing and he has a small patch on his head that looks like a skinned knee. I felt so bad; I usually watch him go down the stairs then help him back up the stairs, but this was one of his "independent, I don't need anybody" days. (Side note: he fell again two days ago while trying to put his shoes on. I'm so worried, but he won't let me help. I get it.....I really do, but I had a talk with him about how he needs to let people help him at this stage, regardless of how independent he's been his entire life. He now has people around him who love and care for him, so he's gotta back down and let us in. I think this time, he listened.)

Anyway, the doctor called and said he didn't have a problem with surgery! I think maybe it was just while he was on the Incivek that they were not wanting surgery. Bottom line, surgery is on......next Monday, November 14th. The only problem is getting him there as pain-free as possible, which is going to be tough because he's already taken almost all his monthly doses of pain meds. He'll be fine once in the hospital and I imagine they'll give him something to take home for the surgical pain. Hopefully, there'll be no more pain from the herniated disc so he won't need all those pain meds he's been taking. I pray that all will work out.

The sad thing is watching this man, the strongest man (besides my brother) I've ever known; always in charge, always in control, become almost child-like. He needs help everywhere; when we go to the hospital, he's in a wheelchair. At home, he uses a cane/walker and I help him go down and up the stairs. He's extremely weak, physically, mentally, and emotionally and the pain is making his mind go into very dark places.

All I can do is pray. I look forward to the surgery and pray that that gives him his much-needed relief. Today is pre-op meetings, so we'll have more details on what's happening by this afternoon.

The caregiver is hanging in there. I do what I can, not knowing the pain he's in but understanding it and trying to be there with all the love I have. He had such a beautiful spirit and I saw that the minute I met him over 30 years ago. He's the Light and Love of my life.

Monday, October 31, 2011

Happy Hallowe'en!

Thanks to the comments I'm getting on this blog. It's been very important for me to express myself here, good AND bad, and to know that I'm accepted even on the days I feel bad about what *I'm* going through is huge. I've always said that my fiancé is, as I've said many times, has got the "fuzzy end of the lollipop" with the discomfort and the meds, etc. I have the easy job, but it is a job! He's the strongest man I know and to see him at these very vulnerable moments....to see him when he's weak as a baby....fragile as a doll.....in the most intense pain ...the effects of the medicines....... I am inspired to keep going. When it's a hard day for me, I come here, or go off in a corner (when he's sleeping) and just have a good cry.


The recent "undetectable" result came at a moment when we really needed that good news. We're constantly aware that we're still in a battle...a battle he AND I fully intend on winning. This disease will not take him. We're out of the Incivek schedule, so not worrying about "fat snacks", etc., but I have to confess that every day I still look at the clock at 3pm and wonder what he'd going to have for his afternoon fat snack!! For some reason, not out of that habit yet!

After meeting with the lawyer, we both feel a weight lifted off our shoulders, so things on the post-accident front are progressing. He gets to see his neurosurgeon tomorrow to determine what the next step is with his back.

The brother is coming over for "Spaghetti and Bloody Eyeballs" tonight (hey, it IS Hallowe'en), so we'll all laugh and smile and have a nice visit. My fiancé really loves my brother (and vice versa), so he lights up when he knows a visit is at hand!

Off to prepare the supper. Hope everyone has a Happy Hallowe'en. Enjoy your candy!

Wednesday, October 26, 2011

That wonderful LOVELY word again!

Just got results from 12-week blood tests (tests done on 10/17/11), and .....drum roll, please........

"..at 12 weeks, the virus is U-N-D-E-T-E-C-T-A-B-L-E!!!"

So happy. Let's hope it's going to be the same results at 24 weeks (that will be January 10, 2012)!

Tuesday, October 25, 2011

I wish I had a do-over for today

This has been the worst day in a very long time. Because of the pain and frustration that my fiancé is dealing with, communication has stopped on his part and he has become independent. He can barely walk, yet he won't let me help him with anything, whether going with him when he smokes, or letting me get him some water or a snack. He declared he doesn't want my help and can do everything on his own. He did tell me that he fell down the stairs on his way out to smoke today. He feels abandoned by me. ABANDONED. BY. ME.

Finally heard from the hospital regarding the MRI and it was confirmed that he has a herniated disc. The prescribed prednisone and pepcid (apparently some people have lots of nausea when they take steroids). That's it. He's back in charge of his meds and everything that he's been used to, so I just will be here whenever he wants me for anything.

Met with an attorney today in regard to the accident. Brought everything I thought might be needed.....information, photos, etc.

Pegasys shot tonight. No side effects/symptoms with regard to Hep C.

Monday, October 24, 2011

Tough Start

A new week, but still no new relief for my fiancé. The week began with more intense acute pain in his back and leg and knee and we started out first thing to the ER this morning. About halfway there, he said to turn back; that the pain had subsided. We have to try to work out a schedule for his meds so they keep him balanced through the day and not try to attack the pain at its height.

That being said, once again, there are no Hep C symptoms/side effects. Pegasys injection is tomorrow, and hopefully, no reaction then.

NOTE: am stopping tracking of food and symptoms/side effects on separate tabs. No need to continue, as that was a huge help with the Incivek regarding the 20 grams of fat snacks, etc. So any mention of those subjects will be noted here on blog entries only.

Sunday, October 23, 2011

Weekend End...and a thank you...

The weekend is over. My fiancé is having a tough time with his back and leg pain. I've never seen him in this much pain or on this much medication. I check on him every 5-10 minutes, and I wish there was something I could do for him. To make him more comfortable, or to take his pain away.

Anyway, the good thing is there are no Hep C side effects/symptoms today. Unless there's some tiredness in there, but I'm sure it's masked or, perhaps, compounded by the muscle relaxers and pain meds from the ER last week. We're both looking forward to the day when he finally feels good! And a day when there are no more Hep C meds! His colour is great, also. I'm guessing no more transfusions for him since it appears the anemia is gone, but we will go to this week's scheduled appointment to check his blood.

I want to say a big "you're welcome AND thank you" to Jackie, the Dragon Slayer! Your comment that you posted on October 20th ("Another Setback") really lifted my spirits. My hope when I started this journal was to document my fiancé's journey and to put my experience out there as well. It was to serve as a record for us and his doctors, but my hope was that it might help others, both patients and their caregivers, on this triple therapy journey, since there was so little info I was able to find. I'm sure your fiancé is handling things well. Whenever I get frustrated with everything, I just remind myself that I'm not the one taking these very strong medicines. Supporting the person you love is an easy job compared to what they have to go through; I'm sure your fiancé feels the same way. I have complained plenty of times within this blog when I'm feeling low or scared or confused or angry. It's my therapy, my outlet. And it helps me think and put things in perspective.  Congratulations on your numbers and we both wish you best of luck with your Incivek! I'm sure you're slay this dragon!

Saturday, October 22, 2011

Short & Sweet

No Hep C symptoms/side effects.  Still feels weird not having to worry about a "fat snack"! Just keepin' up with the Riba and Pegasys. His complexion is still looking good....I'm guessing the anemia is gone, or is at least, less than what it was. Certainly at a good enough level to not require a transfusion.

Just trying to get him feeling better with his excruciating back pain. He's been sleeping most of the day (thanks to the drugs).

Friday, October 21, 2011

Another Step Backward

No cervical spinal procedure today......the ER gave him Motrin AND ibuprofen yesterday and he took an ibuprofen first thing this morning. I wasn't completely aware of what they gave him at the ER and we never received a list of what not to take. I knew aspirin was the biggie, but didn't know everything else on the list. So, we're rescheduled for next week. Back on the coumadin till Monday. His INRs have been running on the low side, so he should be okay with that.

MRI tonight...just got home. It went well and he actually got to sleep a bit during that procedure.

He's still in incredible pain and can't walk on his left leg. He's fine when he's lying down (he immediately goes off to sleep, especially after taking meds), but when he tries to walk, he can barely stand. His left leg is excruciatingly painful, then his leg buckles under him. Don't know what they're going to find, but I hope they find something and take care of it.

RE: Hep C.....no symptoms/side effects to speak of.  A good day in that regard.

Gave him a haircut today....looks nice. He's still losing his hair little by little. Can't wait till it all grows back.

Tired now. Off to sleep.

Thursday, October 20, 2011

Another Setback

With regard to his Hep C treatment, my fiancé is doing well. However, with regard to his back / neck / leg issuses from the car accident last month are getting worse. So bad, that we had to go to the ER this morning. He's having an MRI tomorrow night and has been given some good meds to relax and sleep, which he's doing right now.

It was a very tough day for him .... he felt so bad about being in so much pain and it broke my heart to see him in such a state. The gave him a walker in the hospital and he couldn't even use that; he couldn't even walk! But, he didn't want to stay at hospital. He preferred being here, at home, so they arranged for that to happen.

RE: Hep C.....he was mostly symptom-free today (we're still noticing the hair loss, but looking forward to the day all this medicine is done and he gets it all back!). He did have his weekly tests to determine if he needed a transfusion and happily, they said his numbers were great and didn't have to have one! We were told that as soon as he was off the Incivek (telaprevir), his anemia would, most likely, disappear.  And it seems to have done just that! He's been feeling warmer, still great colour in his face, and (aside from the pain) he's had more energy than has been his norm. Now, we just have to get his back pain issues (stemming from the car accident last month) resolved.....and we'll be okay.

Wednesday, October 19, 2011

Rainy Day

This has been a crappy, rainy day, and I'm glad it's almost over.

It still feels weird not having alarms to get us through the day. It's been a good day other than the rain and just "blah" feel to the day. One good thing is that I got my car back....after 3 weeks. It feels great!

My fiancé is feeling pretty good, too. Seems like he's awake more than has been usual, which is great. His "incivek cough" is gone and outside of a little nausea, not much in the way of side effects. His colour is great today as well, even though there is an appointment tomorrow for a blood draw and possible transfusion.

Well, I'm falling asleep while writing this so I think it's time to go to bed, yeah?!

Tuesday, October 18, 2011

Welcome, Week 13

Today is the first day of Week 13. No more INCIVEK. Ribavirin only, plus the Pegasys on Tuesday (today....just assisted with his shot). Pretty uneventful day. Felt odd without any alarms going off. Well, almost no alarms. We did have the one for his Pegasys injection. But, other than that, it was delightfully quiet today.

My fiancé had a good day. He was present and aware all through the day. He only napped for a short time this afternoon. Other than that he was wide awake all day long and into the evening. And his colour still looks good.....perhaps that transfusion stuck! And now being off the INCIVEK, his levels should come back up enough to make it so he won't need a transfusion. Oh, and conspicuous by its absence was the "Incivek cough".  Also he noticed no metallic taste today. Still a slight bit of nausea, but he only took 1 pill for that as opposed to the usual 3 pills, so that's great!

Hopefully, this begins a time of returning to a kind of normal. We can handle that.

Me Likie!

To bed at midnight, awake at 8am ..... no alarms.
So THIS is what 8 hours of sleep feels like.

First 8 hours of sleep in 12 weeks. This is nice.

Monday, October 17, 2011

This Is It!

(a nod to Kenny Loggins for today's post title).....

Today is the last day for INCIVEK!!!   From now on it's just the 800 mg of Ribavirin daily and the once-a-week Pegasys injection!
Doctor's visit went well and blood tests were done for the 12-week mark, so we'll know in about 10 days if my fiancé is still undetectable (and I believe he will be). Dr. Goldberg said that my fiancé is the first of his patients to finish with INCIVEK. He was pretty thrilled himself about this milestone. A great one for all involved.

Dr. G said that my fiancé should be feeling better within a few days; as a matter of fact, he believes that a transfusion will NOT be necessary this week or after that, because all the blood numbers should be going back up after stopping INCIVEK (telapravir) reducing or sending the anemia away. Dr. Goldberg aknowledged Dr. Mantha and told us how closely they've been working together to get the medicines just right to treat my fiancé. We both expressed our thanks and appreciation for all the communication, care, and coordination that has been going on between the two docs.

At the end of today's visit my fiancé shook the doctor's hand and said "thank you for giving my life back to me." The doctor smiled and applauded him for doing the hard work of taking the medicine. He's still going to push for as close to 48 weeks as he can get to achieve that 90% cure rate, so we still have a long road. Just not as winding as it has been.
11pm.....He just took his last 2 INCIVEK and we both did a little happy dance. He just said to me that he doesn't even remember what it feels like to feel good. This will be huge for him! 

today's weight @ Dr's office = 190.3

Sunday, October 16, 2011

Hold On For....

....One More Day!

Tomorrow is the last day of Incivek! That's the best way to say it and how nice does that sound? I can only imagine what it feels like to my fiancé.

I feel like the transfusion didn't take.....again. He was fine this morning, but after we got back from breakfast with the family, he crashed and was kind of out for the day. Very sleepy and lethargic.

Today was a little up and down, going between the feeling I was doing good stuff and the feeling I couldn't do anything good enough. Luckily tomorrow is Monday...the beginning of a new week and chance for a new start (try to not be so hard on yourself, and enjoy the sleep you'll be getting as of Tuesday when all those alarms will no longer be part of your day).

Saturday, October 15, 2011

Feelin' Hot Hot HOT

Today is starting out to be a good day. He's feeling much warmer than he has been. His face looks healthier and he's actually watching something on Netflix (probably The Virginian or Gunsmoke) rather than putting it on and falling asleep.

I'm going to assume it's because of the transfusion (they topped up his engine with "2 quarts"!) plus the Aranesp yesterday.

Well, I guess I spoke too soon. He faded pretty quickly late morning and now he's back to the usual sleepy guy. I hope when he stops the Incivek on Monday night that he'll feel a bit more like his old self and may even feel more energy.

After today, 2 MORE FULL DAYS OF INCIVEK. From everything I've been reading on blogs, forums, and Hep C web sites, he should experience some return of energy within a week, as well as his anemia decreasing (YAY hopefully no more transfusions!). Also been reading that the SVR difference between the 24-wk full treatment and the 48-wk is 1-2%. I'm still gunning for the 24-wk treatment, but his doctor will have the final recommendation as we get close to that and then my fiancé will have the final decision.

Friday, October 14, 2011

So Tired....

What a day! My fiancé had an appointment with one of his docs this morning (blood work first), followed up with a transfusion directly afterwards. Bloodwork went well. Doctor visit went well. Transfusion went well (2 units this time, not the 1 they thought it would be). Topped off the visit with a shot of Aranesp.

He's going to have to go in once a week to test his blood to determine if he needs a transfusion. I'm hoping that won't be happening every week, since everything I've read tells me that once Incivek is stopped (which is in 3 more days), the patient's anemia gets better.

He's been extremely warm since coming home and his complexion is a bit ruddy as opposed to the being cold and having pale skin that's become his usual. Hopefully, this transfusion will "take" better than the first one in September.

Monday is his appointment with Dr. Goldberg and that will be the LAST DAY HE TAKES INCIVEK! So hard to believe it's been 12 weeks since starting this therapy.

weight = 196 (8am); 194 (11am)

Thursday, October 13, 2011

He's Sleepy (not the dwarf)

Today was "sleepy day" .... big time. I had to wake him up for all his meals/snacks today. When he was up and about, like out having a smoke, or having supper, everything was fine. Wide awake. The minute he stopped and sat down for a minute, he was toast! Let's just hope he sleeps well tonight. It's up early tomorrow to go to the hospital for his doctor's appointment and transfusion. That should give him the boost he needs (let's hope this one takes!).

I've been reading several blogs and forums where people on triple therapy have mentioned being put on Procrit (or similar) injection for their anemia. I wonder why my fiancé hasn't been put on something. Perhaps it's all his other health issues/meds?

Lately, he's had very few side effects/symptoms. Not so much nausea. Flu symptoms seem to have subsided. Pain seems manageable. The one thing that's been getting him is the sleepiness, tiredness, and weakness.

Only 4 more days on Incivek.  YAY!

Wednesday, October 12, 2011

Another Doctor Visit

Today my fiancé saw his neurosurgeon to discuss his MRI / CT SCAN / X-RAY as follow-up to the car accident last month. The good news is that the bulging disc he had in his neck is getting better ... reducing slightly and resettling in its correct position (he had one round of injections in July to help with the pain & numbness, so it would appear that is doing what it's supposed to do). The bad news is the accident aggravated all that and set him back a bit. Doctor wants him to have another round of injections and do some PT. That should help him big time!

This afternoon his hematologist called saying his blood is still a little low and they want to do another transfusion (1 unit) to keep him going. That's supposed to be this Friday. I have felt over the last few days that he might need another transfusion. His skin has been very pale and he's lost any zip he usually has (or tries to muster). So, hopefully, this one will do the trick. As of next Tuesday, he's off the Incivek, and that drug, from what I've been reading, is proving to cause (or instigate) anemia more than orignally thought. And that's it's worse than Ribavirin for the anemia.

Other than that, he's done pretty well today. He tries to make jokes and tries to keep himself feeling "up", but I know there are moments when he just doesn't want to try anymore.

Anyway, off to get his last "fat snack" of the day and ready his meds for tomorrow. Then I sleep.

Tuesday, October 11, 2011

WEEK #12 -- HALLELUJAH!

A wonderful day because it's the beginning of my fiancé's last week on Incivek!!

A not-so-wonderful day because he's had flu-like symptoms all day long and is feeling weak, tired, and a bit out-of-sorts.

It's hard to believe that 12 weeks have passed since he began this journey. But here we are, at the start of week 12....6 more days to take the Incivek and then he's all done with that. Hopefully, some manner of normality will return to him once we pass that day.

Monday, October 10, 2011

Up and Down Day

My fiancé has been a bit up and down today. The day started pretty well. Went for weekly Monday blood tests and did a bit of food shopping. Rested a few minutes at home, then out for lunch with Mum and the Brother. Home to rest after that. He had a short nap and has been experiencing symptoms all afternoon. Increased pain in his back; headaches; minor flu-like symptoms; tiredness. He had a fairly decent appetite today; nothing too severe in either direction.

Tomorrow begins week 12 and is injection day.

Sunday, October 9, 2011

I am heartsore today

This has to be the worst I've ever seen my fiancé.....during the entire treatment. He's got everything today.  Body aches, nausea, slightly elevated temp; he's dizzy, tired, weak, when he walks, he kinda goes sideways, when he intends to go in a straight line. He's been losing his hair over the last 2 weeks (specificallly noticed it in this recent timeframe), too, which is hard for him to take. I hope it does come back as it has been reported to do.

He was so exhausted that during breakfast this morning, which was at home, he was falling asleep while his fork  -filled with a nice bite of pancakes-  was on its way up to his lips. THAT is bad. His skin is extremely pale again, like it was before the transfusion (I'm guessing he may need another). He's not hungry -- as opposed to yesterday when he ate all during the day. Seeing him like this just breaks my heart and both hurts and scares me. I have run out of prayers; they don't seem to be being answered anyway. I have lost my faith very few times in my life, but I find myself at that place again.

Saturday, October 8, 2011

Shift in Symptoms

Slightly elevated temp yesterday and this morning (~99.9 degrees). He seems to be a bit stronger than before the transfusion; although he's still experiencing tired days now and then.

My fiancé has gone through a change of some kind with symptoms. Up till about a week or so ago (that would be after the transfusion), he's not nauseous all the time like he was and his "Incivek cough" is happening daily. It's not the smoking, because he's actually smoking less week by week. He's more tired than sleepy.

Also his taste for "fat snacks" has changed up a bit, too. My advice to someone beginning this triple therapy is to not plan on having certain "fat" snacks on hand. We did that, based on things he loves and he's barely touched them in 12 weeks. He's lost his taste for some of his favourite snacks (fat and otherwise) and we've been scrambling to find something he will like the taste of and can stomach. Each week can change. Luckily, he's got a little over one week left on Incivek, so we'll both be looking forward to getting more sleep as well as not having to worry about eating at specific times, dosing at specific times, and eating stuff that's just going to make him sick.

Friday, October 7, 2011

not a good day for me

He is not sleeping at night; feeling extremely tired; sleeping lots today; and is just not happy with me at all. This is one of those days I can't seem to do anything right; in his eyes. This is one of those days that's very hard for me to handle.

I wish there was a support group for the caregivers of people on triple therapy treatment. I could really use one.

Thursday, October 6, 2011

11 Days Left...

...on Incivek! Can't believe my fiancé is a short-timer on the telaprevir! That means we've gone almost 12 weeks through this journey. Unbelievable. Granted, he still has another 12 weeks to go (minimum) on the Riba and Pegasys!

His mood was a bit up and down today, but not bad. He did some resting today, but was not out for the count as he's been on previous days!

Wednesday, October 5, 2011

A Bit of a Rest

Oddly enough, now that we're near the end of the Incivek (telaprevir), it's harder to get my fiancé to eat a fat snack and/or take his Incivek on time. Many of the snacks (fat and otherwise) we planned are just not working for him at the moment. And this is the guy who LOVES sweets! So, it's pretty much a daily struggle. Luckily, this is now week 11; there's only one more week after this, and then no one will have to worry about taking medicine at an exact time or with a fat snack. I'll be more than happy when that day comes!!

In general, he's feeling pretty good today. It was difficult to make him smile/laugh, but he managed to have a few moments of smiles through the afternoon. Physically, he's feeling a bit draggy this evening....he says he feels like he's getting a cold. That ties in with the Pegasys shot from last night, so no worries there. No fever, just tiredness and the muscle/body aches and general malaise with the flu-like symptoms; sometimes hot, sometimes cold. Good appetite today, too.

Had a nice lunch out at Bertucci's and back home to watch some of the Michael Jackson death trial. Today, with the release of an audio tape of a highly drugged MJ, it was more emotional than usual, and I made sure he wasn't too upset by it. We were both sad, but he seemed okay in general and we took some "laugh" breaks

Tuesday, October 4, 2011

What Will Today Bring?

Well, he didn't sleep at all last night. Tossed. Turned. Up a few times to go out for a smoke. Consequently, I got less sleep, too. Only about 4 hours. I hate Hep C. I hate that it's attacking the only man I've ever loved and the one I waited 30 years to reunite with. I hate that he's not feeling well. I hate all the medicines he's having to take. I hate that he doesn't seem to be getting better.

We had one good news day and that was on September 1st, when we heard from the doctor that he was undetectable (at 4 weeks). Never heard anything from the 8-week test and that worries me. Maybe it's because the doctors are concentrating on getting his blood levels to the normal range and then there was the transfusion to deal with.

I hate Hep C.

Today is Pegasys injection day.
(injection went well....but with food in his stomach, he's not a happy camper about it. Next week, I have to remember to tell him that shot is coming in a few hours and not to eat anything.

Fiancé is not sleeping [at night]; he's bloated, flips between being very hungry and having no appetite at all. No other acute symptoms; sort of the usual suspects, but at a manageable level (nausea, sleeplessness, weakness, tired, slight depression).

He refused to eat anything at 10:30pm (to prepare for taking his Incivek). Said there was enough fat in his stomach (from dinner and a later snack), so he wasn't going to have anything else. He said since the virus is "gone", it didn't matter if he ate the "fat snack". I tried to talk to him about doing what they say to make the meds work, but it fell on deaf ears. So I let it go.

Monday, October 3, 2011

A Truly Manic Monday

My fiancé is doing okay today. Still extremely tired and sleepy. I don't get it. I thought the transfusion would have helped. He's so frustrated with his tiredness and weakness, too. I wish I had a magic wand and make all his sickness disappear. There's so much he wants to be able to do, but can't. Gotta be grateful for the little things, though.

I would've sworn it was a full moon today. People were crazy EVERYWHERE. The drivers were cutting in and out of traffic; people shopping were extremely erratic with their carts. Some old lady near tripped me with her cane! It was just the kinda day you wanted to stay home. Anyway, blood tests this morning and some grocery shopping afterward.

So damn tired I feel like I'm going to collapse.

Sunday, October 2, 2011

Caregiver's Notes

First, let me say, my fiancé is doing well....although still very very tired. I keep wondering if the transfusion did what it was supposed to do. I remember my Mum had a transfusion a few years ago (for her extreme anemia) and she was right as rain the next day. Her hematocrit went up from about 26 to 34 and she had pep in her step the next day! My poor guy, though, is not experiencing this pep. Wonder if it has to do with the meds still, or like I said, did the transfusion work? We'll know soon enough as he has a blood draw tomorrow (first of weekly Monday blood draws).

Kinda wondering what the 8-week blood test showed. Is he still undetectable? Don't know. With all the rigamaroll over his blood issues and getting his meds adjusted so he can be healthy, then the transfusion, we've not heard anything from Dr. Goldberg about what the last test showed for viral load. I'm extremely curious.

I can't believe that Tuesday begins Week 11 on the Incivek! After this upcoming week, there's only one more week! Then, my sleep pattern can go back to normal and my fiancé won't have to worry about eating "fat snacks". Even though he'll still be on the Ribavirin and Interferon (Pegasys), to me, those are the easiest to deal with. I have managed only 4-5 hours sleep each night for the past 10 weeks and I'm hurting. In so many ways. I feel completely lost. Some days I feel completely useless and helpless. And I know it's from the lack of sleep. So, I'm very looking forward to getting a full night's sleep and getting myself healthier.

Saturday, October 1, 2011

Busy Day

It's been kind of a crazy day and I was hoping for "jammy day". Oh well! Went out early to do a few errands and we didn't get back till 4pm! Yikes. Both exhausted. But we're resting this evening and just watching some TV.

He's been feeling great. Still gets tired and can't do too much, but he pays attention to his body and makes sure to stop and rest when he needs to!

September 30, 2011 The Month (Finally) Ends

This crazy week has ended. Car in the shop for repairs after the accident and rental (paid for by other person's insurance): done. MRI: done. CT scan: done. Tranfusion: done. Laundry: done. We're even starting to catch up on our sleep. Whew. He's still feeling a bit tired and took a couple of naps today, but he looks better and I'm hoping in a couple of days, he'll feel even better!

Back on the Ribavirin as of today. Dr. Goldberg called us about 7:30am and said for my fiancé to start taking it again and to take 800 mg/day (200 mg x 2 capsules, twice daily). So, it feels like things are back to normal. Also, cutting back on his colchicine (for gout). He takes 0.6 mg/day (that's 1 tiny tablet, twice daily); they want to cut him back to 1/2 tablet, once daily. That would make 0.15 mg daily. The reason is that colchicine interacts with the Pegasys and especially since he's not having any flare-ups, they feel it's a good opportunity to cut back on that drug. Give Pegasys all the room it needs to do ITS good work!

Blood tests Monday and that begins WEEK 11 of Incivek. One more week after that and he's all done with 12 weeks of the new "killer" meds.

Thursday, September 29, 2011

New Blood

My fiancé had his transfusion today. This was ordered to fix the anemia he's got since beginning the triple thereapy treatment. He had two units put in and seems to be doing much better. It's been a tiring day, but I feel the transfusion has done him good. Dr. Mantha has ordered a blood test (a CBC, I think -- hematocrit and hemoglobin) for every Monday, probably until my fiancé is finished with his tx to ensure his blood levels and numbers are doing well.

Also (and most important), Dr. Mantha said my fiancé can go back on the Ribavirin "immediately"; however couldn't get a hold of Dr. Goldberg to verify this, so left message and will call again first thing tomorrow morning. It's nice to know he'll be able to do the rest of the medicine after all!

Wednesday, September 28, 2011

MRI, CT Scan, X-Ray

MRI @ 2:15am; CT Scan @ 9:15am; X-Ray @ 10:30am

All the tests are done. My fiancé was mad because the doctor ordered only the cervical spine (neck) and not the lumbar spine (the back where he's in pain too). So, after the CT scan this morning, we went up to his doctor's office and he finally ordered the x-rays. Back down to Radiology for the other test.

We're both so exhausted and have been sleeping on and off for the entired day after returning from the hospital. I'm ready for more!!!!

Second full day on Incivek only. Pegasys shot last night and no flu-like symptoms!

Tuesday, September 27, 2011

Major Change

As of today, my fiancé is told to stop all oral meds. Pegasys okay to take, but no more Incivek or Ribavirin. His tests from yesterday came back better than last week, but blood levels are still too low. A few hours after being told to stop the meds, he got another call telling him that he's been scheduled for a blood transfusion on Thursday. Then I guess wait a week and resume some or all of medications.

NOTE: just found out that he's not to be off all meds (as he told me earlier). Just to stay off the Ribavirin and Hydroxyurea. So, due to my confusion, he missed a dose today (his 3pm Incivek). 

He experienced intense nausea last night and this morning and thought (both times) he was going to vomit. He did NOT vomit in the long run; just suffered with the nausea.

Monday, September 26, 2011

Footprints...

You know that inspirational verse about how when we are troubled and only see one set of footprints in the sand, it's not us walking alone, it's when God carried us?  Well, that's bollocks. God has hightailed it in the other direction and left us walking all alone.

I don't think I'm a bad person and I know my fiancé is not. So why is all this bad crap (or is it karma from a past life?) happening? Although I think he looks better since his docs changed the Ribavirin dosage, he says he still feels so weak, he can barely stand. He sleeps pretty much most of the day. And his back and neck are in awful, awful pain since the accident last week. We finally got an appointment for an MRI but, because the schedule is so full, we have to go in at 2:15 am Tuesday (yes, that's right -- A.M......that's the middle of the night).

I've been asking friends to send out good vibes and prayers, but am no longer asking for prayers; they probably won't be answered anyway.

My fear is that, because of all the other health issues now presenting, the doctors will take him off the Incivek and there goes his treatment. I understand that his general day-to-day health is paramount, but if he stops this treatment, he can't go back on it. This is his Golden Ticket. But, I'm giving up railing against it all and am now resigned to whatever the doctor(s) say(s).

Medical stuff:  went for follow-up blood tests today and had INR done (it's supposed to be done tomorrow, but we were there today). This was the first day I worried about his state of depression. He was so despondent, and said something about hurting himself, because of the pain, weakness, and frustration at his health condition(s). I know he wouldn't do anything, especially since we're both so happy to have found each other after a 30-year separation and much sadness on both our parts for the past, but he didn't laugh or make a joke after that statement. I am so sad for him, it's beyond description, but I have to remain strong to help him.

Sunday, September 25, 2011

One Step Back....

Today is a "one step back" day. Apparently, yesterday was too much for my fiancé. I thought maybe he was beginning to feel the effects of being taken off some of the meds, but today was bad. We went out to do laundry today, but I ended up doing it all because the poor guy couldn't even get out of the car. He stayed outside and fluctuated between smoking and sleeping. I wondered if it might be too much, but he said he wanted to go this morning, so... He took extra pain meds (yes, his neck is still killing him) which finally kicked in in enough time to go to brekkie. Just after we returned from the restaurant, he had to struggle to go up the stairs to the apt. And he's been resting/napping on and off the entire day.

So, tomorrow we deal with his neck situation and contact his neurosurgeon at Lahey ... again. Hopefully, this time, someone will talk with us.  And then I have to get crack-a-lackin' on reviewing the papers from insurance to determine a body shop to fix my car.

One other health note....I've noticed over the last week or so, my fiancé has developed a cough (from the Incivek?). I don't think it's his normal cigarette cough. I wonder if it has to do with his blood levels being so out of whack?

This coming Tuesday, September 27th, begins his 10th week on Incivek. The last 3 weeks. I pray he's still undetectable, and I wonder if they'll put him back on the Ribavirin after the Incivek is done.

Saturday, September 24, 2011

Transition Day

Well, you could knock me over with a feather! My fiancé seems to be feeling much better. We had planned to go out this afternoon to see my brother's band play a benefit gig and it was all based on how my fiancé was feeling. He seem v tired (as has been the norm) by the time we were supposed to leave, but he was looking forward to seeing the brother play, so he said he'd be fine. As long as we would be able to sit down, which we were. We were prepared to come home after a couple of hours if he got tired, but he lasted the entired gig!

When we came home, I expected him to lie down and nap immediately, but he stayed awake and watched some of his favourite TV shows. I think he's turned the corner on the blood level issues since stopping the Ribavirin. I'm still confused and dubious as to how this is going to work. Maybe they're keeping him on the Incivek, and when he's done with that in 3 more weeks, they'll get him back on the Riba to finish out the therapy.

The only other concern is his neck and seeing how that plays out. He's still feeling the pain and the tingling in neck and arms. Can't tell if it's feeling a bit better or there's nothing new there at all. His neurosurgeon's office never called back yesterday, so we have to sit and wait through the weekend, and then call them back first thing Monday morning..

Friday, September 23, 2011

Why is God So Unfair?

My fiancé ... the most wonderful man I know, is being put through such a rough time.  His doctors (Goldberg and Mantha) are trying to balance out all his meds to make sure he's doing well on this Tx. But it seems we take two steps forward and one step back. There were more blood tests taken on Wednesday (actually where we were going to when we were rear-ended by that SUV). Dr. Mantha called this afternoon to say that both he and Dr. Goldberg, feel my fiancé's blood levels were "dangerously low" and that he should STOP TAKING THE RIBAVIRIN altogether.

Now, everything I've read says if Ribavirin is discontinued,Telaprevir must also be discontinued. And if that happens, of course, there goes any hope of a cure.

"If peginterferon alfa or ribavirin is discontinued for any reason, telaprevir must also be discontinued."(http://reference.medscape.com/drug/incivek-telaprevir-999658)
"If ribavirin is permanently discontinued for the management of anemia, INCIVEK must also be permanently discontinued. Ribavirin may be restarted per the dosing modification guidelines for ribavirin. The dose of INCIVEK must not be reduced and INCIVEK must not be restarted if discontinued."http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm

And, on top of all that, my fiancé is dealing with the after-effects of the accident from Wednesday. He's had 3 previous back surgeries, as well as previous neck fusion surgery (and after a full exam was found to have 2 more vertabrae that have bulging discs, and therefore will require another fusion surgery). He feels that something is very wrong with his back/neck and has been trying to contact his neurosurgeon today to go in for an exam but no one's returned his call. We're both scared that he'll have to come off the Tx meds if things are that bad that will require immediate surgery.

He's been through such a life of pain and has had a lot of stuff happen to him before we reconnected after those 30 "missing years" and to have all these roadblocks for him, plus my continued unemployment, it just feels like we've been abandoned by God and have been dealt the worst hand. This makes me wonder why God is so unfair. We've both travelled our separate roads to finally meet up and walk our road together and no sooner are we both finally happy and feeling safe,  than God comes along and bitch slaps the both of us.

My fiancé is such a good man and I wish I could wave a magic wand to take away all his pain and discomfort. He doesn't deserve all this crap.

Thursday, September 22, 2011

Not a Good Start.....a Tentative Finish

Fiancé had a bad night and woke this morning with new pains, so we are going to call his orthopedic surgeon today and will most likely have to go the ER to get him an x-ray or MRI or something. I just hope this doesn't affect his treatment.

Well, no phone calls were made until about 4pm. He finally confessed to me that he's scared. Scared that if he goes to the ER to have someone check out his pain and numbness situation, someone will screw with his medications and he'll have to sto the Tx...thereby ending his one chance to cure the Hep C. So we finally called Dr. Goldberg. My fiancé only wants to deal with him. He's the closest to him and knows what to do with regard to everything else he's taking. So, after speaking with someone in his office, we were content to have a call put in to his Doc. Hopefully, we'll hear from him tomorrow, early, and he can give us the guidance we are so needing right now.

 It's been an extremely emotional day and we're all ready for a some nice quiet time.

Off to bed to try to sleep away this day.

Wednesday, September 21, 2011

A Day to Forget

I'll try to keep this short, because I'm exhausted and need to sleep.  First, another dosage change. One of my fiancé's doctors called and told him to stop one of his other medications (Hydroxyurea, for Polycythemia Vera). He'd been on a 3-day cycle of 2 pills, then 1, then 1, but now he's to stop altogether. Not sure for how long.

That being said, he felt v tired again today and decided to take one Iron pill.....I hope that's not going to mess him up at all. I hear so much about not changing any meds, or adding anything while being on the Tx that I worry! We'll try to get more iron into him with food instead of supplements.

Now the last thing for the day: while out after going to the pharmacy and getting some lunch, we were on the way to the hospital to get more tests done (his doctor who told him to stop the Hydroxyurea wanted more blood tests), some idiot in a 2010 Cadillac Escalade rear-ended me at a Stop sign. Shook us all up a little and my fiancé, who was sitting in the back seat (my Mum was in the passenger seat), felt like he may have hurt his back/neck even more than it is right now. He's had several back surgeries, including some fusion at the neck, and currently has 2 bulging discs in his neck (waiting to finish the Tx before having surgery for that). He said he felt tingling in both arms and legs and was debating whether or not to go to the ER. He stayed in bed and seems to be okay at the moment. All I could think of was if he had to go to hospital, they might give him some medicines to relieve any pain/discomfort (and we all know how I feel about extra medicine right now) or, worst case, they'd decide to do surgery immediately or within a week, and that would mean him stopping his Tx. Which would, of course, destroy any hopes of curing his Hep C. Aren't I a ray of effing sunshine? I'm not traditionally a worrywart, but I reckon I have become one lately.

It seems, for tonight, all is okay and we are staying put right here. No hospital visits.

Now I have to begin dealing with getting the car fixed with money I don't have (I'm currently unemployed)....while the douchebag who hit me, drove away without one damn scratch.

Tuesday, September 20, 2011

A Change in Dosage.............Oh Sleepy Day!

Today's a very sleepy day. My fiancé has only gone out once for a cigarette this morning and it's 10am. It was quite difficult to wake him up for his morning "fat snack" and meds...even a strong Italian Roast coffee couldn't do it! But, he took his Incivek and Ribavirin at 7am (after eating at 6:30am) and promptly went right back to sleep till 9am. That's when he got up for his smoke (which honestly isn't much these days; he says he can barely get a couple of puffs and starts to feel weak, like his legs might just buckle under him) and now it's 10am and he's back hangin' out with the Sandman. I say take it while you can!

Today is also Interferon Day (whoopdidoo).   : )

RIBAVIRIN DOSE REDUCTION (week 9)~~
Okay.....just finished doing some research after a call from Dr. Goldberg's office. We were told to reduce my fiancé's Rivabirin dose, from 3 caps twice daily, to 2 caps twice daily. I was a bit worried, since I'd read that changing the Riba dosage was not a good thing and could result in a relapse, even after an RVR (rapid viralogical response) or adversely affect his SVR (sustained viralogical response). I realized that many of the studies and reports I read online were dated as long ago as 2005, but I thought, "there must be a reason for doing this".  So after more research, I found a few sites that talked about doing this because the patient's anemia had gotten worse. I believe that was the number the dropped so low when the Doctor's office called (I heard "28.1" but didn't hear what it was for, so am assuming that it was his HCT). I did find that a typical 1200 mg/day dose of Riba (which is my fiancé's current, or current up until today, dose) can cause anemia ** , which, even though not permanent, is enough to cause some of the symptoms I have been seeing more of lately. One study did say that a drop to 800 mg/day (which is what his Doctor prescribed as of today) is quite common in treatment and does not cause anemia. So, fingers crossed, this is the right thing.

In response to other patients' concerns, I have read that the reduction in Riba dosage does NOT cause a change in the SVR, and boy, did THAT make me breathe easier. I would hate to think that all my fiancé's hard work could possibly be compromised because of this dosage change. I have to keep the faith and realize his Doctor wants him to be successful and wouldn't do anything to stop that from happening.

I pray every day that my fiancé feels better (ond day at a time) and finds that cure at the end of this treatment journey that he's on. I do my part when I can and how I can, but some days it seems more uphill than others.

** I have noticed the symptoms of anemia more the last week or so, but had just chalked it up to the side effects from the triple meds.  From an anemia web site, here are the main symptoms of anemia:
  • extreme fatigue & weakness
  • feeling tired
  • difficulty sleeping
  • difficulty thinking clearly (this has been common the last week or so)
  • headache
  • dizziness or fainting
  • cold (this one for sure the last week...he's NEVER cold, now he's worse than me!)
  • paleness
This day has finished quietly, and with an uneventful Pegasys injection. Praying that there's no side effects tomorrow. He's having a tough enough time with everything else. Wonder when we'll see a change in the anemia from the reduced Riba dosage.

Monday, September 19, 2011

Doctor Visit and a Day of Rest

Doctor visit this morning was great. His doc is happy with his progress, but did say that it's possible my fiancé may have to remain on the Ribavirin and Interferon for a full 48 weeks (as opposed to the 26 weeks we originally thought). I'm still rooting for the 26 weeks, but it's good we understand that it may take longer than originally anticipated.

weight=188.6

Today was another tough day; my fiancé was extremely tired in the car on the way back from the doctor. I told him he had to not fight it and get the rest his body is craving. He was a good patient and did that immmediately when we arrived home!

Sunday, September 18, 2011

Tough Day

Morning didn't start too well....my fiancé woke up in the same mood (bad) he went to bed. He'd had a bad night; chills & sweats. Said he really felt like he was getting sick. As the morning progressed, he kept feeling a bit better. Went to brekkie and he really enjoyed his french toast. Fun breakfast. He seemed okay after breakfast, but as soon as we got home, he kinda crashed again. He slept a bit and woke up in time to eat his "fat snack" at 3pm.

It's a little after 9pm and his spirits are much better, but he's still experiencing body aches, and is tired and weak. Haven't taken his temp, but he says he feels like his temp is up slightly. If I can get him to cooperate, I'll take his temp tonight.

Saturday, September 17, 2011

Good, then Bad

The day started well....no side effects or symptoms. We began to prepare for a visit from my fiancé's daughter (her car needed a small repair that my fiancé and my brother took care of). The boys handled the car repair and I took care of the food prep and service, along with my fiancé's daughter for part of the meal. The job didn't take long, but the boys were outside for a couple of hours and my fiancé missed taking his 3pm Incivek. We sat down to a late lunch at 3:30pm and I insisted he take it right away (which he reluctantly did), and he barely made it within the 9-hour window.

His daughter left before 7pm and he went to rest and nap. That was when things began the downward spiral. He began to feel the flu-like symptoms and was angry with me because he couldn't find something to go with his 10:30 "fat snack". He never asked me where it was (I had placed it in a cabinet so no one else would take it) and consequently got pretty mad when he couldn't find it. He explained that he wasn't feeling well and when I told him that I wasn't either, he hit the roof. I realize my mistake at sharing how I was feeling. He's not in a space where he can relate to anyone's feelings but his own, especially when he's feeling those flu symptoms. I get it....I truly do.

So, I'm going to jot down the food and symptom details, then off to bed for me.

Friday, September 16, 2011

TGIF

A great day! Aside from some nausea, my fiancé had no side effects/symptoms today. Looks like we're free and clear and no flu-like symptoms from the Pegasys this week at all!

Not much else to mention. Everything's going well and he can't believe he's winding up Week 8 on the triple therapy treatment. Doctor's appointment on Monday and the week 8 blood tests!

Note: Last night after I'd already logged off, my fiancé got extremely sick after the 11pm "fat snack" and he vomitted (pretty violently) for a few minutes. He seemed to feel a bit better afterward; well, maybe not better, but more relaxed and calm.

Thursday, September 15, 2011

Another Good + Quiet Day

My fiancé has experienced NO flu-like symptoms this week (yay)! He is, however, feeling the nausea specifically this afternoon. He seemed grateful when he asked "what do we have on for today" and I answered "nothing"! He watched some TV today and went out for a smoke periodically, but that's it for "activities" -- he's felt sleepy and tired all day.

Wednesday, September 14, 2011

Hump Day

Another day and we're in the middle of the week.  My fiancé is feeling v tired and sleepy this morning. He had a good night's sleep and actually went to bed before 12:30 last night, which is unusual. He's not complaining of any pain (at injection site) or any flu-like symptoms, so hopefully that will be the norm for today. We can handle the tiredness; it frustrates him that he can't get up and do simple things, but he's more able to handle that than the flu symptoms. He's in good spirits today, too.

So, off for the day with some errands to run and I'll check back in later.

Errands went well; spent a few hours out and had a good day. Came back and he rested the remainder of the day. Didn't sleep, just rested. He had no tummy issues until after his "fat snack" at 2:30pm....that kinda ruined him for the rest of the day. But he's retired for the night and seems to be settled in for the night. The best part: no flu-like symptoms today, so hopefully that will be the same story tomorrow and that'll be the first time since the beginning of this treatment!

Tuesday, September 13, 2011

The Quiet Man

Today was an interesting day. My fiancé spent the entire day resting. He didn't sleep too much; although after brekkie, he did go back to sleep for about 2 hours. But he was awake the whole afternoon and had fun watching some old TV shows, including the very first episode of "The Lone Ranger"!   : )

So, just the weakness and tiredness today. Not much nausea; only just after supper. He's had some itchiness today, too. He takes his Pegasys shot tonight, so hopefully, he won't have the usual reaction.

He's in v good spirits and we're excited that today begins Week 8 (got meds delivery today) on this triple therapy!!

Pegasys (interferon) shot went well today; much better than last week. Just a tiny, teeny weeny bit of blood at the injection site, but that was because he kept pinching his skin after removing the needle, so we have to watch that! No pain at the site, though, so that's great too!

Monday, September 12, 2011

The Caregiver

First, I'll begin by saying my fiancé is doing quite well today. We were running around a bit (again...as usual) and that made him tired, but other than that, it's been a good day for him.

This post is mostly about me. To anyone out there who's a caregiver -- for anyone .. going through anything -- it's a tough road. Almost tougher than the road on which the person you care for is travelling. Almost. There are rough patches, but mercifully, the cargiver doesn't have to take the medicines and suffer any side effects or symptoms. However, the caregiver does get the least amount of sleep. And is the glue that holds the family or relationship unit together. This little caregiver is overcome with exhaustion. In the just under 8 weeks of the treatment so far, I have gotten only 4-5 hours of sleep per night, and I'm the type of person who needs 7 hours per night to be fully functional. I try to grab a nap here and there, but it's not the same, no matter how delicious a nap can be! When I went to bed last night I felt like I was coming down with a cold or the flu. "Peppery" throat, headache, body aches, and extreme exhaustion. Almost sounds like I'm on the therapy, yeah? I'm doing better today, except I'm so tired/sleepy that I have been dropping things, tripping over my own feet, and feeling a bit off-kilter. Yay...go me!

Without me having to write details on some of the situations, here's an article I found that describes it pretty well.  "Living with a Hepatitis C Patient"  The article's a good one for anyone who's a caregiver, regardless whether it's for a Hep C patient or any other patient. It's important to remember that you need to take care of yourself, or you won't be able to take care of your loved one!

I love my fiancé with all my heart and am doing all I can to help him be successful with this treatment, as well as to be happy and not have to worry about anything. I think I'm doing a pretty good job ... so far. But, he has the harder job, for sure. I pray every day that he remains undetectable and gets better as each day goes by. This treatment is surely for both of us; and we're looking forward to a life without Hep C in it; a life with renewed energy and a relaxed future outlook!

Sunday, September 11, 2011

Tired + Happy

Just winding down from a wonderful and incredibly busy day. Went to brekkie this morning with the fam and my fiancé's tummy was in bad shape but he still wanted to go. That turned out well; he got french toast with fruit (and we've learned, of course, that fresh cut fruit helps with nausea). Home after that to rest / nap for a couple of hours, then up again to get ready to visit with my fiancé's daughter (along with her best friend and her mother) to celebrate his daughter's birthday.

It was a great day with lots of yummy food--he did a great job and just had a little tiny bit of everything, including birthday cake--and didn't have to take any nausea pills, which is huge. He even said on the way home that his tummy did not bother him at all during the day.  Awesome!

As much fun as he had spending time with his amazing daughter, it completely wore him out. We walked in the door and he completely passed out on the bed. Took me awhile to wake him so he can have his last "fat snack" of the day. Got him to have 1/2 cup of ice cream; then he went out for a smoke and now he's back lying down watching some TV. Time for me to restock his meds for tomorrow and then get myself to sleep!

Saturday, September 10, 2011

Slow Saturday

Slow, relaxing day today. Fiancé rested most of the day and decided he wanted pizza for supper! So off we went to Pizzeria Regina. Delicious pizza and wonderful salads.

Usual symptoms for him today, but I think he managed them v well. He was v quiet and looked almost sad this morning (nausea, weakness, sleepy), but perked up a bit this afternoon and fully enjoyed himself at dinner. Was extremely unhappy about having a 10:30 "fat snack", but managed to get him to drink a mix of half-and-half and milk, plus eat a 2" square brownie. He did manage to get it down and is settled in for the night at this point.

Sweet dreams to all!

Friday, September 9, 2011

Icky + Sicky

My fiancé is doing well in general today, that is to say, his spirits are good. But the flu-like symptoms are back. Body aches, general malaise, and very very sleepy. The nausea is making itself known today as well.

I wish I could take all his pain away. He's hanging in there and looking at how he's done so far (7 weeks in), it's really feeling doable to him, this whole process. The light at the end of the tunnel is looking less like an oncoming train!

He really can't eat any kind of decent sized meal. Even the smallest amounts of food (at supper time) give him an upset stomach. Some nights, he's very hungry but even with the best of intentions, he can't get much down. The only meal that truly makes him happy and is yummy for him is breakfast. He has his cereal (currently Rice Chex is the fave) with half-and-half so he can take his Incivek and looks forward to it every day!

He's resting now and we just have to get past his 10:30pm "fat snack", then we're settled in for the night.

Thursday, September 8, 2011

Mellow Day

First, let me mention that my fiancé actually went to bed (AND to sleep!) before me last night! I'm usually in bed and off to sleep between 12 and 12:30am, because I make sure he has his "fat snack" at 10:30pm, then make sure he takes his Incivek at 11pm. After that, I set up his meds for the next day as well as get my own stuff sorted for the next day. He hit the pillows at 12am last night!  I was shocked....AND he went right off to sleep!

It was mostly a mellow, quiet day. He's been feeling mostly pretty good; except this week is "tired week". If he stops for more than a few minute, he's off to sleep. But that's good, because he's getting his rest!

Called CuraScript to refill the three prescriptions and will get the delivery next Tuesday. So, I'm off to bed right about now and then prep for going out to the laundry first thing in the morning!

Wednesday, September 7, 2011

Trying to Get Back to Normal

Had a busy week and today was the last big event for awhile. My brother had a colonoscopy today and my fiancé had a difficult morning with his reaction to the Pegasys from last night. It was challenging for me today, because I wanted to be with my brother and support him as he did for me when I had my colonoscopy a couple of years ago and I also felt I needed (and wanted) to be here for my fiancé since he was having such a bad morning. Wish I had a clone!  Anyway, I drove my brother to the hospital and our Mum decided she wanted to go and wait for him; then I drove home to make sure I was here for anything that my fiancé might need. It all worked out v well!

This afternoon was better for my fiancé than the morning. The only symptoms this afternoon were nausea and bloating. This morning he was v weak and extremely sleepy. No fever; no body aches. It's possible those will show up tomorrow, so we'll keep an eye on that.

Tuesday, September 6, 2011

Oops....my bad

It's 9:30am and he's taking his "7am combo" (Incivek + Ribavirin) now! I thought I reminded him to take them at 7:15 (30 minutes after breakfast), but I guess I didn't. My first screw-up. And we were doing so well. I feel awful.

Well, another day under our belts.  It's 11:30pm and we're just going off to bed. The rest of the day's meds were dispensed and taken on the correct schedule, including tonight's Pegasys shot. He had slight bleeding at the injection site, but I think it's because after he removed the needle, he kept a tight grip on the area he'd pinched. He says he's okay; no pain in that area. We'll keep fingers crossed and see how he's gonna do tomorrow!

Monday, September 5, 2011

Another "Too Busy" Day

Happy (Belated by one day) Birthday to Freddie Mercury.

He would've been 65 this year had he lived. I know it's not blog-related, but Freddie was one of my favourite performers and made me believe that anything was possible. He's missed very much, at least in my world!

Okay, there was way too much going on today. I feel like I'm the one who needs to rest more so than my fiancé today! We ran errands and went out with the fam to lunch at a great local Chinese restaurant. No naps today, no resting. I'm afraid that days like this, which are happening more and more often, because he's feeling better in general, will result in a complete breakdown either tomorrow or the day after. Well, we'll see.  He's doing very well, though, didn't even have any tummy issues today. Took his afternoon Incivek a bit later than normal, but it was within the 9-hour window, so I think we're good. I want to remain as strict as possible with the timeline on these meds. He's done so well so far that I don't want to screw it up in any way!

Sunday, September 4, 2011

Better Day

It's a better day all around, so we got THAT goin' for us! ; )

It's the end of the day and I'm completely knackered!!! He felt so much better and was able to eat a nice breakfast with the fam @ IHOP this morning. He's felt v well all day and the only side effects he's claiming today is nausea. He mentioned that he's constipated today and thinks it may be due to the antacids he's taking when he has tummy troubs.

Mum's been mentioning how good he looks. How his skin looks like it's "glowing". I looked at him closely and did notice his skin colour is better,,,, pinker than it used to be. I chalk that up to the medicine killing the virus and bringing the skin back to normal colour.

He didn't get to rest too much today, but he felt good enough to run some errands this evening. Nothing grand, just returning some stuff to a local store. He's dead asleep in the other room right now while I write this. Since there's not much else to report, I'll leave this right here and go off to see the Sandman myself! 'Night all.

Saturday, September 3, 2011

Not a Fun Day...

... for me. He had a bad night last night. Didn't get to sleep till v late and then, with the nice weather for sleeping last night, we left all the windows open. Consequently, he woke in the middle of the night with the shivers from being cold (he doesn't usually sleep under the covers). Took a good 20 minutes before he stopped shivering and his breathing got back to normal.

This morning, it was very hard to wake him up...and it normally takes him awhile to wake up in general. And so far, he's been a bit short with me today, but I know it's either that he hasn't fully woken up or he's just not feeling v well regarding his condition/medication. He's not sharing with me either way. It's not going to be easy to get him to take his meds this morning, but I've got to get him to do it, so off I go!

3:00pm: He's been sleeping virtually all day. When he's awake, it's only for a few minutes to use the loo, or have a smoke. Even doing that knocks him out. He says when he's out smoking, he feels his knees buckling under him. He literally takes 2 puffs and he's back inside. He felt a bit warm this morning, but his temp was only 99.9; I just took it again, and it's 98.7. Click here for all the symptom details for today.

He's been nicer to me this afternoon, but was not happy when I gave him his 2:30pm "fat snack".  When I wonder why he's so cranky, I just look at the medicine he has to take and realize it's okay; I would be so much worse I think if it was me taking the meds. When I see him this debilitated, I take a few minutes to myself in the bathroom and just cry it out.  Think it's that time right about now.

10:00pm: Well we got through this day. Just barely. It has been tougher for him than for me; I feel so frustrated that there's nothing I can do for him when he's feeling this bad. And I can only imagine how frustrated he must be. Praying he'll have a good night, sleep well, and wake refreshed in the morning. One more round of meds tonight and this one's in the books!

Friday, September 2, 2011

Still Sinking In

My fiancé is still having a hard time wrapping his head around the news from yesterday. I guess after living with Hep C for so long; to realize that it's no longer the threat it was just a couple of months ago, is a rather large pill to swallow (pun not intended).

We took my Mum out to dinner for her birthday tonight and he didn't get the chance for a real nap of any kind. He had a few minutes earlier today, but not enough to give him the rest he really needs.

CuraScript called today; it's time to re-up his meds! I'm surprised at how great they are about calling and keeping him on track. They're always there to answer questions or just chat whenever I call them. V nice to have another group of people in our corner!

Thursday, September 1, 2011

U-N-D-E-T-E-C-T-A-B-L-E ! ! ! !

We finally heard today! My fiancé's doctor's office called earlier today to tell him that the 4-wk test is in ... and ....... DRUM ROLL, PLEASE!

THE VIRUS IS UNDETECTABLE  

My fiancé looked slightly confused and I heard him say "what is undetectable?". Well, when I heard those words, I began to cry. I just knew that would be the result and I did a happy dance across the living room floor. It's a few hours after the phone call, and my fiancé is finally letting it sink in!

I have been saying prayers like I've never done before every night before sleep. I've been meditating, sending out good energy (I'm a Reiki therapist), and just generally keeping it all on the positive side, so I couldn't be happier!  He can't believe he's getting this new lease on life. We know he still has a long road; we're at 6 weeks into the triple threat therapy, but this is the news he needs to help him go all the way!

To quote Charles Dickens (from "A Christmas Carol") ..
"We may sleep to-night with light hearts . . . "      ♥

Wednesday, August 31, 2011

Injection Reaction Again

Today brings another set of side effects due to (we believe) the Pegasys injection. He could barely stay awake while eating his breakfast this morning, then after about a 2-hour nap, he was quite awake and present. After some errands, he went in to lie down and napped on and off the afternoon. After dinner, he took a nap for a couple hours. As a matter of fact, he looked v sleepy during dinner!

Picked up new meds today ... Promethazine 25mg. It's apparently like the Ondansetron, exept it's not under the tongue. those seem to help quite a bit, so we're grateful for that!

Tuesday, August 30, 2011

Cautious and Apprehensive

Today is Pegasys injection day (not till later this evening), and we're a little worrisome over what to expect. After last week's very bad side effects (the flu symptoms) and being basically down for the count for 3 days, my fiancé is understandably a bit apprehensive about taking the shot. I'll report later how that went (fingers crossed).

Tummy issues today, but other than that, no other side effects. He rested this morning before our errands, but has not napped at all the rest of the day. I feel so bad when his tummy troubs hit, but I can't do anything. He had a banana awhile ago and that does seem to stop any nausea.

11p = Pegasys (interferon) shot. Went smoother than last week; no bleeding, but he said it hurt, which is something that it hadn't at the beginning. I assisted with the shot and everything went fine. Not sure why it's hurting him these last 2 weeks.

Monday, August 29, 2011

Another Good Day!

Today's a great day....no tummy troubs at all! Just some tiredness and he's making sure to rest when his body tells him to (which is not the norm). He's learning. ; )

Had a visit with his primary care doctor; a physical exam with follow-up from previous visit. Everything went well and she seems pleased with how he's doing on this new treatment, too.

He's still dropping weight though...his weigh-in today was 184.2 (minus almost 5 pounds since Dr. Goldberg visit on 08/22 when he was 189.6).  His BP today was 126/66 which was great, too! Much lower than the last time he visited his PCP (May 2011; 160/100!).

Still nothing about his (4 wk) viral load results.   : (

Sunday, August 28, 2011

Weak-end

My fiancé's feeling quite weak today. Doing the slightest thing makes him tired, so he's kept pretty quiet and just watched some old Westerns! Except for assisting me with making a simple dinner (we invited the brother over again), he's pretty much kept quiet and rested, which is v good.

It's not been a good day for me either. I'm really feeling exhausted....still only managing 4-5 hours of sleep a night and I need those 7 hours. Gotta make sure to get those hours in ASAP. But compared to him, I'm doin' okay! We keep plugging away!

Saturday, August 27, 2011

A Little R&R

A great day catching up on all the DVR stuff that's been holding. Resting every chance we can and relaxing. Getting ready for Irene tomorrow. Not likely to be too big a deal for us, but we're watching everything anyway.

He's feeling great today; v happy. Only minor tummy troubs this evening, but not enough to really take anything for it. Itching all over ... not intense, but an annoying slight itching.
Nice to have a day when there are no deadlines ... for anything.

Looking forward to hearing (hopefully) from Dr. Goldberg on Monday. We need to hear something good after all this hard work my fiancé's been doing!