Tuesday, July 1, 2014

Independence Day!

Today is the end of the 12-week trip and we're celebrating not only the country's independence day this week, but also my guy's independence day. No more meds. Hopefully EVER.  He has felt so different on this journey than he did the last time. This time around, he truly feels he's beaten it, and he never felt that way on his previous trip down this road.

Physically, he's been amazing.  He has lost a lot of weight...down to 162. Some tired days, but in general a good experience.

So, last dosage today and blood test on Thursday. I pray to God and Goddess that all is well and his finally cured.

: )

Sunday, May 18, 2014

A New Hope

Well, it's been quite awhile since I have posted here. Not much has been happening with my Hep C guy....he's still feeling the sting of the last failed cure attempt with the Incivek. But his doctor has been uber positive down the road, promising a cure, so how can we, um I, not be positive along with him?

In February, my guy had an MRI and blood tests to prep for doctor visit on the 23rd. The doctor was, again, positive and even informed us of the two new drugs out there: Sovaldi (sofosbuvir) and Olysio (simeprevir).  Unfortunately, my guy is intolerant of both Ribavirin and Interferon, so our hearts sank at first hearing of this. However, Dr. G told us he was going to treat my guy with the two (what I call "killer" meds). He was going to prescribe the Sofosbuvir AND the Simeprevir. Both oral ... no needles this time. Other good news was that it's only a 12-week program.  And the cure rate is in the 90 percent range!

Now for the bad news:  the MRI showed that there is a tumour on my guy's liver.  It doesn't qualify as cancerous based on the many criteria the doctor mentioned, but it took a good 3 days for my guy to even feel like talking about it. All he could hear in his head was "tumour" and he had already decided he had cancer.  I reread him the notes I took at the doctor's office and it took a lot to convince him it wasn't cancer. The doctor scheduled a follow-up MRI for May 15th, which he had the other day. We'll be seeing the doc on Monday, the 19th, so we'll have more info then.

The doctor also set my guy up with an appointment with the Transplantation Group at the hospital.  Since we're hoping that once my guy is cured, he'll be on track for a new liver.  If he's not cured of Hep C, then no transplant because the disease could infect the new liver and he'd be right back to where we are now. So, we've got fingers crossed, toes crossed...everything we can cross crossed that everything goes well!

Minor aside ~~ after that first MRI, the doc discovered gallstones, which would be the reason for some abdominal pain he's been having, but he is, for all intents and purposes, asymptomatic.

So, my guy's been on the treatment since April 9th and is tolerating it pretty well.  He does have tummy issues (and diarrhea) and that has prevented him from eating basically anything over the last 6 weeks, so there is weight loss ~~ he's dropped 20 pounds (he had one GOOD day on the 15th, where he ate very well through the day and even enjoyed a wonderful fish dinner at home that night; however, that's the day he had his MRI and the injected him with the dye, so I wonder if that had anything to do with it).  But, he refuses to even think about giving up; after all he's at the halfway mark right now and he isn't anemic, anorexic, or having any internal issues like he did on the last treatment, so he is quite determined to make it work.

And, oh yeah, he's still smoking.  A shock to me especially since we had a very dear friend pass away in November from lung cancer.

Tuesday, February 5, 2013

Further On Up The Road

On Friday, the first day of February, my dear man had an Ultrasound. The doc told us they usually only do them on a yearly basis after treatment, but he wanted to keep a closer eye on things, so he's doing them every 6 months. Thankfully, the result was good. No tumors or masses of any kind in the liver. He is steady as the moon; no changes. Blood tests will be taken in another week or so (along with some other routine tests, just so he doesn't have to get stuck too often) and we'll see what those results are.

Dr. G said he's optimistic that 1-1/2 to 2 years down the road there'll be another new treatment and the buzz is that it'll be pill-based only; no interferon. Although my honey is interferon-responsive (meaning it knocked down the virus very well in his body), I would hate to have him take that again, since that's what really did him in, hmmm, almost a year ago. February 10, 2012 is when he stopped all his meds, because of what they were doing to him. He looked horrible and I sincerely thought he was not going to make it through.

So we wait, for the blood tests, for another 6 months (the next Ultrasound).  I hope sometime soon to be able to write in this blog a little more often, especially when there's another new treatment.  Dr. G promised (again) that he is confident he can cure my guy. From his lips to God's ear!

Bad news: my guy's gone back to smoking. After 7 months of good work, he's back to that horrible habit, and has his smoker's cough back, and smells of tobacco all the time (even though he smokes outside). I hate it.

Caregiver update: I had the Shingles for the month November (with still some residual pain and numbness) and some other health issues come up. I'm not good at dealing with these things since I've never been sick a day in my life! Currently, in a mild depression and trying to figure out how to get out of it. 

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 go.....my 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 tests...you 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.