Wednesday, August 22, 2012

the day I've dreaded....

While my guy was in hospital recuperating from his very successful surgery (he is now walking only with a cane and has no more need for a wheelchair), they took his blood for the Hep C Quantitative test that was his 6-month after ending his meds.

We saw his doctor on Monday and did not get the news we hoped for.

His PCR is positive and his viral load is right back where it was before he started treatment last year. We were shocked, to say the least, since his tests have all been "undetectable" since week 4.

For both of us, it was like hitting a brick wall, and I can imagine how much worse it was for my honey. We cried; tried to take it in; and are trying to move on.

His doctor said the positive to take away from this is that my honey is intereferon-responsive. But that doesn't seem positive since he can't be treated again with this therapy. We now have to wait possibly 5 - 10 years for a new therapy to come along.  His doctor did promise to cure him, but that didn't help on that day at all.

Will try to keep posting here, but not sure when that will be. If we receive any news or information, I'll surely put it up here.

Peace, and I pray that everyone on this therapy finds that cure that we're all dreaming of.

Wednesday, August 8, 2012

Surgery a HUGE Success!

My man had his VERY long-awaited surgery on Monday, and I knew when I saw the doctor and his PA after the surgery that things went well. They both greeted me with the biggest smiles on their faces....I'd never seen either of them smile quite like that.  I was also surprised to have them both say to ME,,, you make sure YOU get some rest and take care of yourself.  They were very emphatic and repeated it to make sure I got it. Let's hear it for the caregiver!!

The surgery went longer than anyone would like, but not as long as they said it could possible honey went into the OR at about 11am and was in recovery at about 4:45pm. Saw him in recovery a couple of hours later and he looked great, but was in enormous pain (doc said that would happen). But, it's a different kind of pain; this was surgical site pain, not the pain he was having from two vertebrae rubbing together.

Yesterday morning was a shocker....when I went to see him in hospital, he was able to move his left foot and left leg like he did before the accident last September!!!  His doctors used to do strength know, like, push up against my hand, or try to stop me from pressing down...that kind of thing. My guy asked me to do that with his feet and legs and I was completely gobsmacked at how strong he was!!!  The PT came in a bit later to get him out of the bed and he stood up in 2 seconds! That alone used to take him 20 minutes first thing in the morning. He is so over the moon about the way things have turned out that he hugged his surgeon when he visited last night!

The only bad thing is that my Mum fell last Thursday coming out of the shower and broke three ribs. She was in hospital for two nights and we brought her home on Saturday. She seemed to feel better once home, and Sunday seemed pretty nice, too. Oddly enough, the morning I take my fiancé for his surgery, my Mum takes a downward turn. She has crying jags all during the day. I've been going back and forth from the hospital and home to take care of both my patients, and that is causing conflict. She gets mad when I leave here and he gets mad when I leave the hospital. I drive away from both places in tears from the stress and make sure I walk in to each place with a smile on my face.  Luckily, my man will be coming home either Friday or Saturday AND (big drum roll) will not have to be going to a rehab facility afterwards ---- he's THAT advanced after the surgery. With both of them under the same roof, things will be easier for me; only running from room to room instead of city to city.

I pray daily to God that he gives my family a break, especially me. I'm very close to a breaking point and have no idea what would happen to this family if I was to end up in a hospital bed.

But let's focus on the positives right now. Two people who I adore are on their way back to health. And a HUUUUUGE thank you to my brother, who has realized what his presence in this family means and is making changes in his life to be with us on a more regular basis. He's been taking time off work to help care for Mum a few hours in the morning and evening. That makes my life a bit easier, and I couldn't be more appreciative. Thanks, Bro!

Also, my fella will be having his HEP C QUANTITATIVE blood test today in hospital. Friday will be his 6-month mark of stopping all Hep C meds and it will give us the "UNDETECTABLE" results we've been waiting for. The "journey towards a cure" is almost complete!

Tuesday, July 24, 2012

Long time, no post

It's been quite awhile since I posted anything here. I actually miss my frequent visits and sharing, but I'm glad that he's done with the meds, so it's good that there's no need to post what he's eating, the horrible side effects, the mood swings, the pain, the fear. August 10th will be a full 6 months since he stopped all the antivirals and we're both looking forward to that blood test that will read "undetectable" once more!  His weight is also back up (200); he had gotten down to about 180 and was much too thin. His current weight seems to be right on the money. When he started the Hep C treatment last year, his weight was about 230, I think. He's very tall, so he was still slim back then, but suffice it to say that physically, he's levelled off and things are looking up!

Unfortunately, that 6-month milestone will be celebrated with him in the hospital. The reason for that is that he's finally getting his long-awaited lumbar fusion surgery (on August 6th), which is a good thing. The bad thing is it's a very long (5-8 hours) surgery and there's a chance he may not make it through (there's always that chance, as they tell you, but with his other health issues, we're both pretty worried). Another good thing is that he has finally quit smoking, and I truly believe that it's for good. It's now approximately 2-1/2 months since he quit and all the benefits are showing. There's no more cough and his skin is looking better. That could also be because of all the antivirals being out of his body. I know that his hair is growing back; he actually needed a good haircut which he hasn't had in about a year! His spirits are up and all things point to positiveness that will help him through this surgery.

His spirits WERE up....until yesterday. Between the incredible pain he's feeling from the bone-on-bone pain due to the disc being completely gone and having to wait 3 extra months for this surgery, he's experiencing some withdrawals from the pain meds he was taking, and has fallen into a severe depression. He's got to wean himself down as much as he can. The ideal scenario would be if he could be off them completely, but I'm not sure how far down he can cut them. The pain is just unbearable for me to watch, so imagine what he's going through physically, mentally, and spiritually. The down side to all this is he's saying some hurtful things and making decisions/changes about his/our living arrangement that bother me. However, that being said, I've decided that I can't control his feelings, or influence any decisions he feels he needs to make. I can only support him with the love that I have for him and help him along in life. I just fear whatever happens surrounding this surgery will have a huge impact on our relationship.

I will pray for his complete health, a successful surgery, and hope that God will take care of everything else.


Tuesday, May 8, 2012

Updates and New Surgery Date

Well, there was no surgery this month. My fiancé's white blood cell count turned out to be too high and with that would have come possible clots and other complications to the surgery. We had some glitches with the surgery and the date and then once we got it all sorted, his hematologist called with the news of the low white cell count, and said the surgery is off and would not even be considered for another 2 months. We had gone through so much to get the surgery schedule, get him reduced from his pain meds, and he stopped smoking (yes, AGAIN), that when the call came in about the surgery being postponed, we were devastated. But after having time to absorb the info, it turned out that having this extra time would give us something we didn't have before: control over the timeline.

We sat down and made a schedule of what to do in the upcoming 2 months, including stopping smoking (AGAIN), reducing the meds (again, because there's no way he could have gone 2 more months on the low dosage he had reduced down to; with the bone-on-bone pain he's been experiencing he had to go back to the usual dosage), contacting his primary care doc for pain management, and just generally getting our ducks in a row.

Regarding the Hep C ~~ his hair is still growing back and the texture is improving as well; no other symptoms or side effects!! His skin is looking better. His spirits are better. He's gained a few more pounds and is in a normal range again, but I think he'd like to be back down to 180 as he was in the strongest phase of the meds, but if that's the case, he'll have to work at it (like the rest of us!). In general it's all thumbs up! Next test will be the 6 months post-meds and that's in August! We're looking forward to that "undetectable" result as all have been since the first test!

Side note (and not really important to anyone but me): This caregiver is hitting the skids again. I'm always last on my own list and it's showing! I feel frumpy, unstylish, and unhealthy. I never had designer clothes, but I used to care more about what I looked like when I went out of the house. Used to put make-up on every day, but no longer. I guess because I don't feel good, I don't take the time to look good.  : (  

I'm working on it. Have started eating better and walking again. I've been growing my hair long for my fella (since we got back together 3 years ago), but I really really dislike it. My hair has never looked good in a long style because I have very fine hair; so it just lays there with no style. I've been putting it in ponytails and clips and all that does is hurt my head and give me headaches. I'm working on losing 20 pounds by the time my best friend from high school gets married (June 21st), for which occasion I will cut my hair! (He's not happy, but I keep telling him it's going to happen, so he has to get used to it!) I'm slowly nursing myself back to health; then I can better take care of my entire family.

Tuesday, April 17, 2012

Upcoming Surgery

Everything's still on the up and up with my fiancé. Last month he felt that his liver might be a bit enlarged (his abdomen on that side did look a bit distended), and he was worried. Doc ordered an ultrasound, and, luckily all came back normal. He's not had any symptoms or discomforts or anything bad from the Hep C or the drugs. Not sure exactly how long that stuff hangs around in one's blood system, but, outside of his back problems, he's pretty much back to his old self! Next appointment with Dr. Goldberg is in August -- his 6-month follow-up and although we're a bit nervous about the that blood test, we're both feeling quite confident that the results will be what they have been since test #1: undetectable!

His hair is still in's coming back slowly (but surely), and he needs another haircut! That seems to be the only symptom/side effect that's hanging on since the meds have stopped. The doc did say it would take months for the hair to be back to normal, so we wait. But I'm happy that he's happy he's not taking meds anymore and things seem to be progressing!

Now, to his back.  : (          He is having posterior lumbar fusion surgery at L2-L3. His last surgery in November to remove some of the herniated disc didn't work. Now he's losing or has lost the rest of that disc and is experiencing bone-on-bone pain. We've been waiting what seems an eternity for the surgery date, but we now know that next Monday, April 23rd, is the date for his surgery! He'll probably be overnight for a few nights anyway. My feeling is, the longer they want him to stay, the better chance he'll have of complete recovery. I felt he came home too early the last time.  Anyway, praying for a good surgery, a quick recovery, and am hoping for good vibes and positive energy all around!

Thursday, March 15, 2012

Update on the back issues

First, I know it doesn't seem like it should be happening this quickly, but my Honey's hair is beginning to grow back (only one month off the Riba and Interferon)! The texture is not dry and wiry anymore; it's soft and there's definitely more of it. He needs a haircut which he hasn't had since last year!!!! His energy is also coming back. The only thing holding him back is his back.

After 3 MRIs, his neurosurgeon said (and we saw the images) that the same disc he operated on in November has ruptured again and is WORSE.  He determined that THAT is the most likely reason for the temporary paralysis. He ordered a CT scan and has begun the process to schedule the surgery. This time is will be much agony for my fiancé. And since he's already on so much medication for his chronic back pain from previous surgeries, they have to send him to a pain management specialist to wean him off. If he takes more than what he's already taking, he'll stop breathing. Very simple. He's a real trooper. I can tell the pain he's in now and am not looking forward to seeing him after the surgery, which will involve removing the ruptured disc, putting in spacers, plates, screws, and whatever all other hardware is needed.  Sounds more like construction than surgery.  : (

So definitely no more anemia, anorexia, or other side effects from the evil (yet, lovely, because they killed the Hep C) drugs. His weight is back up to 181, although he has been fluctuating 5 pounds up or down, but he looks better and is feeling better in general. Oh, he called Dr. G saying that he felt his liver was a bit enlarged. Dr. G wasn't too alarmed, but ordered an Ultrasound of the liver. That came back 100% normal. So that's checked off the list of worries (which is much shorter than it used to be!). At last blood test his HCT was 40 and his HGB was 12! So incredible to see those numbers.

All of this is catching up with me at this point....this little caregiver has not had more than 4-5 hours of sleep a night on the average in the last 8 months and today I feel like I'm coming down with a cold. BLECH. Hopefully I can sleep a bit today -- no appointments of any kind!

Tuesday, February 28, 2012

I Have Good News, and Bad News

The good news first: my fiancé is done with treatment! His doc wanted him to go 48 weeks, but we ended up compromising to 36 weeks. However, the beginning of this month, my man had some serious blood issues come up and was by his PCP's associate to come off the Riba (and Pegasys) for the weekend. All during that weekend, all we did was talk about whether or not my fiancé wanted to go back on the treatment. When all was said and done, he made the final decision to remain off the treatment and call it done. He'd done 30 weeks at that point anyway, so it seemed the best idea. I already see a difference in him. And we're both hoping to see even more as the weeks go by!! (they did one more test @ 30 weeks and that came back UNDETECTABLE as had all previous tests.)

The bad news: he's been having the same symptoms and pain as he had in his leg and back as he did just before his surgery in November. He's been convinced the disc they operated on had ruptured again and, after three MRIs (cervical, thoracic, and lumbar), his neurosurgeon told us today that the same disc (L2/L3) had, indeed, ruptured again. So CAT scan this coming Monday and surgery again. I'm hoping the recovery will not be bad; he somehow feels it will be longer and harder, but I'm putting it out in the universe for successful surgery and better/easier recovery. It is what it is and we just have to go with the program, taking each day as it comes.

I feel bad for him because it seems, just when we thought his strength was coming back and things were going to get better, this happens and it's two steps back.

However, I think it's hugely important to focus on the good news: finishing with the triple threat therapy and looking forward to the next appointment with Dr. Goldberg (6 months) for a final test and, hopefully, the same result as all tests to date: UNDETECTABLE!

His current weight is 176.4....still losing a little but hopefully, now that he's done with the Ribavirin, his anorexia will go away and things will balance out a bit. His appetite is mostly back and he needs no more ARANESP shots as of last week, so the anemia is gone!

Tuesday, January 31, 2012

Can't believe this week is February!

Still awaiting results from the last test, but we're confident my fiancé is still undetectable; hopefully we'll hear from the doc's office this week.

Everything else is going well. His anemia is well under control, even though he did need the Aranesp on Thursday. His numbers were low enough to warrant the injection, but they were on the high end of the spectrum, so very happy there. The anorexia is pretty much under control as well; his appetite seems to be good (not quite back to normal, but acceptable -- he eats one good healthy meal a day).

He still freaks out at his hair loss and the texture of his hair has changed a bit, too. I noticed the other day after he blow-dried his hair that it looks drier and a bit more coarse. The loss doesn't seem to be as much as it was in the beginning, but looking at pictures we took in June of 2011 (one month before he began treatment), you can really see a difference.

Not related to the Hep C, but his gout has been bothering him very much lately, and that, along with the temporary paralysis, makes it hard to watch him try to be cheerful and operate "normally" some days.

He's contemplating going public with his treatment. So many of his Facebook friends have been asking about him, both on my page and on his, and he just hasn't had the energy to spend any real time on the internet. He barely checks his e-mail. But as he gets closer to the end of treatment, he feels like it's time for people to know what's been going on with him.

We're both looking forward to the summer when he'll have been off the meds for a couple of months. I have a friend who's getting married in June and it will be nice to have him feeling even a little better and stronger by then!

Monday, January 23, 2012

Almost There!

Had a visit with Dr. Goldberg this week and took 24-wk test. Doc says my fiancé is doing exceptionally well and has close to zero toxicity with the drugs. He actually called my fiancé "the poster boy" for this treatment, commenting on how well he's done, especially considering the other health issues he has. Dr. G is also confident that the 24-wk test will be undetectable as all the other tests were.

We did discuss length of treatment; originally Dr. G said he wanted to push all the way out to 48 weeks, which really saddened me because of seeing what the drugs have done physically and spiritually to my dear boy. But at this last appointment, Dr. G said he feels quite comfortable cutting it off at 36 weeks, after taking another test. He said that if the results are as they have been all along (i.e., undetectable), then he gives his blessing for an earlier cut-off than he originally planned. That made us both very happy.

Talking to the doc, he mentioned that now we have about 6 months of people being on actual treatment, there are some changes and new info. He said that now they're (whoever "they" are) talking about a possible 12-week treatment, which would be amazing. And they've also found that it's not necessary to have a full 20 grams of fat with the Incivek. There wasn't any cut-off number of grams; I'm guessing just some fat to help it transport into the body is all that's needed. I can only imagine what news will come at the one year mark! I still believe that all the people in this first wave of what I call the "triple threat" treatment are heroes and pioneers. To go through the really difficult stuff and be the ones the industry learns from is an amazing thing.

My guy is looking a bit better and his spirits are coming back around again. It's been 12 weeks since he's been off the Incivek and his doctor says that's right on track since, that's about the amount of time for that drug to leave your body once you stop taking it. And now, when I give him his Riba, he gives the capsules a big kiss when he takes them, realizing how short a time is left to be on this treatment!

Anemia is under better control; he hasn't even had to have an Aranesp shot over the last 3 weeks and his numbers keep going up every week! Anorexia seems under control; he fluctuates about 4 pounds week to week. Pegasys is still going well; although last week was the first week in months that he had any flu-like symptoms after the shot. Still having issues surrounding his back (intermittent temporary paralysis is still there), but seeing him feeling better with his Hep C situation is like the sun pouring through the window after the rain!

Tuesday, January 10, 2012

Status Quo

Nothing really new. And that can be a very good thing. Although we have noticed this week that my fiancé is sleeping more than he has been. We're both chalking it up to the Riba. It's the only culprit among his medications that can do that to him. Every day I see him so fatigued and sleepy and wish he didn't have to go the full 48 weeks with this treatment. But, that's his decision in the long run and I have no right to say anything about it.

His blood levels have been great and no transfusions in over a month. His hgb is up around 10 range and that's wonderful.

Still having back issues, and worse, still having the temporary paralysis and falling episodes. That completely breaks my heart, so I can only imagine how he feels about it all.

His weight has been very stable lately, so that's a good thing, too.

Wednesday, January 4, 2012

Happy (and Hopeful) New Year

A new start to a new year and the wonderful news is that after the 24-wk blood test (done a bit early at 20 wks), my fiancé is still

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

He's been rethinking the full 48-wk treatment as the meds have seriously wrecked him and the thought of 24 more weeks is almost unbearable. But the final decision is up to him. His doc wants to push him all the way out to increase his chances of being 100% absolutely, no question, fully cured. He's been undetectable since the 4-wk mark (his viral load at the beginning was over 9 million) and with all the data out there, I feel like going the extra weeks isn't necessary. That being said, I'm not a doctor and don't know all the facts, as much as I have done research on this. Maybe we can just push it to 36 weeks?

Happy Happy New Year to all. I wish a very health, happy, and prosperous (in every way) year to everyone.

Symptoms/side effects: still dealing with the hair loss (but less than it has been); anemia (much better -- no transfusions in a month at least); anorexia (mostly under control....weight is currently 180..but he's eating well).