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.