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A Small Update

Nearly every day, at some point, Dave will turn to me and say, “I really wish I hadn’t done the Hep C treatment.”  It has nothing to do with what he put up with during the treatment, the side effects and such.  It has nothing to do with the fact that he went through all of that for months, ended up being pulled off the treatment, and still has the Hepatitis C virus.  What he means is that he feels it messed with his immune system in a way that nobody predicted, and the aftereffects are lasting longer than he ever imagined.

Back when they first talked about him doing the Hep C treatment, I was very nervous about it because Interferon directly affects the immune system.  All of his doctors were in communication, though, and felt that he should have no trouble with it even though he’d had a bone marrow transplant in the past.  We did try to search for stories of people who’d had bone marrow transplants and later went through treatment for Hepatitis C, and there just wasn’t anything out there.  (That’s part of the reason I’m writing about it here.)  In fact, after Dave was off treatment for a couple weeks he did a Google search on that very subject, clicked a link that looked like it was a perfect match to what he wanted to know, started reading and then started to laugh.  He’d clicked on one of my blog entries!

Basically, because his bone marrow transplant was so long ago (20 years ago, in fact, on August 13, 1993) the consensus was that he shouldn’t have issues like graft-versus-host disease (GVH or GVHD).  Nowadays, people who get the same kind of leukemia Dave had, chronic myeloid leukemia or CML, aren’t generally treated with a bone marrow transplant; there’s a pill they can take instead.  So treatment has come a long way.  However, so many people just didn’t make it through the treatment back in the early 90s; Dave is a bit of a rarity.  That also means that he doesn’t have a large pool of people to draw information from, other patients who’ve gone through the same treatment he did and have survived as long as he did.  He’s kind of a lone wolf.

When we first met, it wasn’t even five years past his transplant, and he still dealt with GVH fairly often.  As the years have gone by, it pops up less and less.  Basically, his body will get symptoms that mimic some other type of disease or condition, but not quite.  The doctors will test to make sure, and that can tell them whether he actually has the condition he has symptoms of.  That’s when he knows it’s GVH rearing its ugly head.  For instance, at one point he had all the symptoms of rheumatoid arthritis, but he didn’t have rheumatoid arthritis.  Eventually the symptoms go away or he finds a way to deal with them (cayenne pepper capsules worked, in that case).  In the early days, he would take steroids to deal with the GVH.

As I said, his doctors all dismiss him if he feels he has GVH; they say that the transplant was so long ago, he wouldn’t be dealing with that any more.  But we’ve found studies that show there definitely is chronic, long-term GVH in bone marrow transplant patients, and it affects their quality of life.  And Dave definitely feels that the Hepatitis C treatment, especially the interferon, set off a host (no pun intended) of GVH issues in his body.

His skin is affected – he has itching, random rashes, and a nasty-looking spot on his back that he’s having checked by dermatology in a month.  He has neuropathy in his legs, with random twinges and tingling.  He has mood swings, issues with anger; he can just generally tell that his mood/emotional health isn’t right.  I can’t tell you how many times he’s turned to me and apologized after an especially moody day, with a frustrated, “They really messed me up!”

So that’s where he’s at right now.  He’s trying some homeopathic things for his skin (including a fantastic-smelling basil wash) and mood (Rhodiola seems to help).  He’ll mention the skin issues at his dermatology appointment, and we’ll see if they dismiss him or not.  I think he’s also planning to talk to his GP in October about what he’s been dealing with.  I would say that he probably won’t do another Hep C treatment unless it doesn’t involve Interferon, and they can guarantee it won’t mess with his immune system like this.

In other news, Paige has come back to roost so my nest is no longer empty!  University life really, really didn’t agree with her; she spent the summer at her dad’s, reasoning that it would be easier to find a job out there, and she did get her very first job in July (at McDonald’s).  However, she and her dad have always had a fragile, unsteady relationship and things went south for her out there.  She moved back here the day after her birthday, and is looking (and looking and looking) for a job, since she had to quit McDonald’s – it was located in her dad’s town, over an hour north of here.

Her goal is to save money and eventually get her own place, and then do community college – I think that’s wise and much less expensive in the long run!  If anyone has employment suggestions for a teen with not much job experience, we’d love to hear them.  Ideally we’d like to get her into something like an office job, hopefully full time, which I imagine would be better as far as pay and hours compared to retail or the food industry.

So our house is bustling again, and I like it that way.  Yes, we have our challenges, but life would be boring without them!

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Dealing With Tinnitus

One thing I haven’t talked about here in a long time is tinnitus.  I’ve always had tinnitus in varying degrees; it ramped up quite a bit when I lost all the hearing in my right ear in 1993, and then settled down again after a while.  Usually it would go away when I put my hearing aids on.  My brain seems to just go a little crazy when there’s no sound coming in, so it likes to make it up, I guess.

If I had tinnitus when I was wearing my hearing aids, then it usually signaled an impending illness or it was a side effect of stress.  I’ve never had tinnitus as a result of something I ate or drank (caffeine, for example) or from medication.  All the advice floating around on the internet regarding changing your diet to eliminate tinnitus was useless to me.  If I was sick, or about to get sick, I got tinnitus and nothing stopped it except becoming healthy again.  If I was stressed out, I could usually count on the tinnitus fading away once I introduced sound via my hearing aids.  At night, or any other time I didn’t wear my hearing aids, I had tinnitus again.  (Sometimes I could keep a fan running at night and the white noise would keep the tinnitus at bay, since I still had some natural hearing before 2008.)

If you’ve never had tinnitus (ringing or sounds in the ear) then it is really hard to describe.  You definitely hear the sounds, but you can tell they aren’t coming from an external source.  It always sounds different to me – sometimes it’s a low hum, sometimes chirps and beeps, and I’ve also had tinnitus that sounded musical.  It roars, it clicks; some days it’s like Morse code, some days it’s like a train rushing through a tunnel.

Whenever I imagined being deaf, I always imagined dead silence.  Hearing nothing.  Just a big void, if you will.  When I actually lost all of my hearing, I was horrified to have sound replaced by tinnitus.  It was loud and constant.  There was no way to make it go away, because there was no way for me to hear.  I couldn’t introduce sound like I used to.

If I dwelled on it too long, it would’ve made me truly crazy.  I mean, I had noise in my head all day and night long; the only time I got relief was when I was sleeping.  For me, being deaf meant being locked into a prison of constant, hellish internal sound.

Since I knew there was nothing I could do about it, I tried to embrace it as much as I could.  I took comfort in the fact that at least it gave me the semblance of hearing something.  It wasn’t like someone just flipped a switch and my world suddenly went quiet.  Knowing I was at the mercy of this noise, I just did my best not to fight it and, when I could, to find humor in some of the crazy sounds tumbling around in my head.

In those early days, it was just TINNITUS, in the middle of my head.  I couldn’t have told you which ear it was coming from; it just was there, everywhere, not one side or the other.  Now when I get tinnitus (very rarely), it’s easy to pinpoint which ear it’s coming from.  I have it a little bit as I’m typing right now; my CI processors are off while my wet hair air-dries.  I have a very low, constant hum in my left ear, and my right ear has a high pitched whine that sometimes turns into chirps and clicks.

The difference now is that I know once my hair is dry, I’ll put on my CIs and the tinnitus will melt away.  I’ll hear the sounds of my environment and not the sounds in my head.

Getting cochlear implants completely took away my tinnitus.  I had tinnitus after surgery (sometimes very VERY loud, like a roaring train) but once I was activated…poof, it was gone.  The first time the house was quiet and I was wearing my CIs, sitting there in actual silence, I actually got teary-eyed from relief.  It was so nice just to hear nothing at all.

Now I hear silence all the time.  If it’s quiet and I have my CIs on, there’s no tinnitus.  If I have my CIs off, I usually don’t have tinnitus.  It might sneak in, very quietly, but not enough to bother me and definitely nothing like what I used to experience.  If it does ramp up and get crazy, then I know I’m either stressed out or getting sick, just like before.

If you suffer from tinnitus, I know how miserable it is.  Believe me.  For me, the only cure has been sound…either through a hearing aid or cochlear implant.

Three Weeks Down

As of today, Dave is in his third week of treatment and so far he is doing really, really well.  He hasn’t had any side effects beyond the ones he noticed right away – the dry eyes/skin, and being tired later in the day as well as the day after he takes his PEG-interferon shot.  (In other words, we don’t plan big activities for Thursdays!)  He was a little disappointed not to have the weight loss side effect; he was joking with me about a week after his treatment started, saying he was probably going to be the only one who gained weight while doing the treatment!  Seriously though, he’s maintaining his weight and eating well.  We never had bad eating habits to begin with (fast food once in a blue moon, otherwise we make all our meals from scratch with very, very little processed food involved).  Now that the weather is warming up we can start taking our daily walks again.  So all in all, this is going much better than we imagined it would!

One of the few photos where Dave is smiling!  At his sister Laurie's house, about 12-13 years ago.

One of the few photos where Dave is smiling! At his sister Laurie’s house, about 12-13 years ago.

The next monkey wrench will be when he adds in the third (and final) medication, Victrelis (boceprevir).  I suspect this medication tends to give people rashes, because the Nurse Practitioner, Mita, mentioned this more than once.  If he adds in the Victrelis and still doesn’t have any bad side effects, we’ll both be very relieved!

We went down to Hines VA hospital on Wednesday for Dave’s first official labs since starting his treatment.  He doesn’t have diabetes, but the medication tends to raise blood sugar so Mita wanted him to fast just for this lab so she could check his fasting blood sugar.  The lab opens at 7 and we live about 45 minutes away (by car) from the hospital.  Dave usually takes his Ribavirin at 6 am, but he has to take it with food (to prevent stomach upset) and that meant he couldn’t take it until after his blood was drawn.  We didn’t want to get his meds too far off schedule, so we headed out early in order to get him in right away for his labs.  That would give us the chance to have breakfast in the hospital cafeteria so Dave could take his meds, and then he had an appointment with Mita at 9 am.

Dave was up around 4 am, and I slept in (!) until 4:50.  Neither of us ate (he was fasting, I was fasting in solidarity with him) and after catching up with things online and getting an eBay order ready to ship, we were out the door a little after 6 am.  We made good time and they took him right in when we got to the lab.  After that we headed over to the cafeteria to get some much-needed coffee and some breakfast.

After we finished eating, Dave handed me the receipt for safekeeping.  I noticed it had a little grid on it, so I took a closer look.  Every item we ordered had the calories listed!  I thought that was really cool, especially if you were an employee that ate at work every day.  It’s so easy to overeat, but if you know ahead of time how many calories you’re consuming, it really helps.  Of course, I didn’t notice this until after we were done eating, but it’s good to know for the future.  I also belatedly realized that the calories were listed next to every item on the sign they had at the station we ordered from.  I didn’t realize that at first; I thought they were numbers you could use to quickly order.  (Kind of like when you go to Burger King and order a #5 or whatever.)  Wouldn’t that have been hilarious if I ordered my food using the calorie counts?!  Luckily I didn’t finish all of my food, and I gave my toast to Dave, or I would’ve ended up eating more calories than him (definitely not something I need to be doing).

Then we proceeded to walk off every single one of those calories…I should’ve worn walking shoes that day!  We spent the next hour and a half walking all over the hospital, exploring.  It is seriously huge!  We even walked past a door ominously marked “Weapon Cleaning Room.”  (!)

Mita had Dave’s test results, all except his viral load count, by the time we arrived for his appointment.  His blood sugar was what it normally is, and his platelets went down a bit but they were still over 100 so they were still at the low end of normal.  His hemoglobin was also lower than his baseline count from last month.  She said if those numbers go down further, they might adjust his Ribavirin dosage.  That also explains why he’s been more tired than usual.  Other than that, his numbers were okay and she didn’t change his meds.  We go back in two weeks, on May 8, for the third and final class and also for his next set of labs (not fasting this time).  He’ll get his next month’s worth of meds and we’ll learn about Victrelis and its side effects.

I guess the viral load number takes a while to process, so Dave is calling on Monday to find out what it is.  Hopefully it will be much lower; this will show that the medicine is working and clearing the Hep C virus.  The goal is for the virus to be cleared by week 8…if that happens, his treatment will go on for another 20 weeks and he’ll be done.  Much better than being in treatment for almost a year!

After the appointment, we headed down to a health fair the VA had going on in their auditorium.  It was very, very loud (as those types of events tend to be) but if you got 15 signatures from various booths, you were entered into a raffle…and Dave was determined to enter!  We had a good time going around and talking to everybody.  Back in the day I would never try to make small talk with so many people in such a loud environment; I would hang back next to Dave and just listen (and smile).

We stopped at a booth dedicated to both colonoscopies and Hep C treatment.  Mita was supposed to be manning the Hep C portion but she was still running her clinic, so we chatted with the colonoscopy fellow.  I snagged a book, Colonoscopy for Dummies, and when we got home I left it in the bathroom for some appropriate bathroom reading.  Dave came out that evening, waving the book at me (he does not ever, ever want to be reminded of his colonoscopy prep, which he claims was worse than going through chemo).  He said, “Why is this in the bathroom??” and without a beat, I said, “Well, it’s the most appropriate place in the house.  You can read it and it will scare the shit out of you.”  It caught him off guard and I must say, we got a long, much-needed laugh out of that!

Slaying the Hep C Dragon

I think it’s time for a medical update (now that we actually have some progress).  I took a little unexpected hiatus from writing this past week while I dealt with what I call my ‘weird stomach thing.’  It started happening after I had a miserable month of salmonella poisoning from eating infected eggs that we got from Costco, back in the summer of 2010.  I wasn’t sure WHAT was going on with me at first; I was on this fish oil cholesterol medicine called Lovaza and I assumed I was having issues because of that.  I stopped taking it, still had the issues…they slowly started getting better after about 3-1/2 weeks, and then about two weeks later we got a letter from Costco, helpfully telling us that the eggs we purchased were tainted with salmonella, and we could return them for a refund if we wanted to.  (We had already consumed them, DUH – we bought them a month and a half before they sent the letter!  After this, and also getting two similar letters regarding infected ground beef about 2-3 months after we had already eaten it, we stopped buying meat and eggs from Costco.  Gross.)

So anyway!  I realized that was why I stayed so sick – eating those damn eggs for nearly a month – and hoo boy, it was miserable.  I couldn’t really leave the house, since I never knew when I might need to break and run to the bathroom…especially if I had just eaten a meal.  Not that I could really eat – it caused so much pain, I was just entirely debilitated.  Great way to kick off the summer – I was sick from the end of June pretty much through the whole month of July.  After that, my stomach seemed much more sensitive and now I get my Weird Stomach Troubles usually 2 or 3 times a year.  That’s what I just finished dealing with and UGH, I hate it.

The last couple of times it’s happened, Dave has also had the same issues (and Paige as well – she was home when I came down with this before) so I’m not sure if it’s some kind of virus thing or what.  It lasts anywhere from 3-6 days, and basically causes massive pain, especially after eating.  I’m talking ‘lean against the counter and breathe through the pain like it’s a labor contraction’ kind of pain.  I won’t get too graphic, but the symptoms sound like gastroenteritis (and may well be, who knows) except for the fact that, um, nothing really happens in the bathroom, if you catch my drift.  So in that sense, it sounds like a diverticulitis flare-up, which…hey, I’m over 40 and most people actually have diverticulitis and don’t even realize it, so maybe it’s that.  Who knows.  All I know is that it’s awful, I become completely unproductive because the only thing that doesn’t hurt is to lie flat or stand up (sitting is the worst), and all I can think of is how much discomfort I’m in.  I also can’t leave the house because what if I need the bathroom?!  I added to my general misery this time around by imagining how I would deal with this if I had to go to work outside the home…NO WAY.  I would have to take a minimum of four days off…can you imagine?!  They would fire my ass so fast!

Dave is always offering to take me to the doctor and I always hiss back, “NO.  I will never, ever go to the doctor for stomach issues because I refuse to have any of those tests done.”  When I was 12, I had chronic stomachaches and I had to be admitted to the hospital for a bunch of horrific tests, all of which involved multiple enemas beforehand.   The worst of them was a lower GI, where they gave me a barium enema and made me hold it while they took x-rays.  I was 12, and it was a young guy technician who did the enema, which mortified me beyond reason.  I was so tense and in so much pain, by the time they told me I could go to the bathroom I just went into the room, closed the door and collapsed on the floor in pain.  Finally everyone started banging on the door, asking if I was okay, when all I wanted to do was stay in that bathroom for another hour or two.  UGH.  Never, ever again.  (By the way, the tests just revealed that I had an irritated stomach lining; the doctor prescribed Valium so I would Chill Out…and it worked.  My stomach still gets upset when I’m stressed out.)  So I have this irrational fear of going to the doctor for this stuff.  I won’t have the tests done; I told Dave I’d rather deal with the symptoms than the pain from the tests.  And it always goes away.  It just sucks while it lasts.

So while I was deep breathing and waiting for my stomach to stop being an asshole, Dave was gearing up for the start of his Hepatitis C treatment.  I started feeling better and then Dave got sick with the same symptoms I had.  (Oh!  What seemed to really help was peppermint oil – Dave actually went around to a bunch of stores to find it for me.  It’s called Pepogest, and once I started taking it I instantly felt better.)  He had a 9 am appointment on April 10 and that was just a day or so away.  Luckily he beat the symptoms back with Pepogest and his magic bullet, drinking vinegar.  Can you imagine?!  I hate the smell of vinegar, so I can’t even imagine drinking it (although he mixes it with juice…it’s still gross, though).   Luckily by yesterday morning, we were both feeling like our normal selves as we headed out to the VA hospital.

Of course, we were driving in the middle of a massive thunderstorm (which I loved).   It seems like every time Dave has an appointment for anything liver-related, we have some major weather event.  It started with his liver biopsy in 2011 (we had a blizzard – it shut the hospital down and the biopsy had to be rescheduled).  And this year, every time he’s had an appointment it managed to snow enough to where we weren’t sure we’d get down there in time (luckily we did).  I told him that when we go back next month, there will probably be a tornado to contend with!

We were once again part of a very small group: just us, the couple from the first class we went to, and another single guy (but not the same guy from the first class).  Everyone there was Genotype 1a, getting the same treatment:  PEG-interferon shots once a week, Ribavirin capsules (3 caps twice a day), and then Victrelis (boceprevir) starting about a month from now.  We were in the class for almost three hours and let me tell you, it was awesome.  The nurse practitioner who was in charge, Mita, was worried it was too much information and didn’t want to confuse people, but it was really fantastic to get to sit and ask questions and just learn all about these major medicines that Dave was going to be taking and how to deal with any side effects that come up.

There was extensive discussion on each possible side effect and how to deal with it.  I took pages of notes and asked lots of questions.  I liked having a small group because we were in a very small room that was quiet and really easy to hear in.  I could understand the video that she showed us, even though it wasn’t captioned, because the narrator stayed on the screen and I could read her lips and hear well enough in the small quiet room.  (The video was on how to give yourself the interferon shots.)  As scary as this treatment is, I feel like Dave is in good hands and I just feel really comfortable knowing he has someone so closely monitoring everything, someone we can turn to whenever we have questions.  We never felt rushed, and we left there feeling really confident.

The guys all gave themselves their first shot while Mita was there to help and give them pointers to make it easier.  Dave said it hurt, but nothing he can’t deal with.  Actually, before the class started she pulled him aside and said he didn’t have immunity to Hepatitis A or B, so she was giving him a series of shots for that.  He got a combined Hep A & B shot before the class started, and later in the day he mentioned more than once how much his arm hurt.  That was definitely his biggest complaint about the whole process!  He has to go back for two more vaccinations to complete the series, and he’s already grumbling about it.

He takes three Ribavirin capsules twice a day, 12 hours apart (he decided on 6 am and 6 pm).  He took his first three last night, right after dinner.  He’s taken another three this morning.  He only does the Pegasys injection once a week, so he’ll do that again next Wednesday before bed.  So far he hasn’t had any big issues come up.  He said, “I can tell something’s going on, but that’s about it.”

He did say that when he got up around 4 am, he could barely open his eyes because they were so dry.  He doesn’t make tears – it’s either from the leukemia or the chemo, I can never remember which – so he always has to use eye drops to keep his eyes moist.  This is above and beyond, though.  Mita did specifically say that the treatment ‘dries you up’ – she was referring to possible kidney issues, and all the guys were instructed to drink at least 2-1/4 liters of fluid a day (not caffeine, such as coffee or pop).  Dave was really good about that but it still really dried his eyes up, so we’re heading out to buy him some heavy-duty eye drops later this afternoon.

The only other thing he’s noticed so far is that he’s been cold, which is unusual for him.  He thinks it’s from all the extra water he’s drinking.  Usually he’ll go out in 30 degree weather with a t-shirt on; if I ask if I need a jacket he’ll tell me ‘no.’  Then I step outside, shriek, and come back in to find my winter coat.  So it’s a little weird to see him walking around the house with thermal underwear on under his t-shirt!

I did have to sternly tell him that he needs to tell me how he’s feeling and not try to spare me/hide it from me (which he does tend to do).  I mean, if he falls out or something and I call Mita to let her know, it won’t be helpful if all I can say is, “Well, he keeps telling me he feels fine!”  So I told him to let me know what’s going on, I’m not going to freak out or anything – I just need to stay informed so I can be there for him if he needs me.

The way the VA program works, the meds are given in person.  So he has enough for four weeks, which takes him to the point where he has the third class.  That’s when they introduce the third medicine, Victrelis, which is also a pill and has its own array of side effects (hence the class, to learn about how to deal with them).  If he doesn’t show up for the class, he doesn’t get his meds.  I think it’s a good process, personally.

His next appointment is in two weeks, April 24, when he gets his first labs drawn.  This is an important blood test – it’ll show how his body is handling the medicine, whether it’s raising his blood sugar, affecting his thyroid or his white blood cell count, and most importantly, whether it’s killing the Hep C virus.  I guess some patients actually clear the virus by this two week point!  Depending on how he’s responding, they’ll decide how long the treatment continues.  I believe it doesn’t go any longer than 28 weeks, which is half the time treatment used to take.  If it’s not working, they’ll stop treatment and he will just wait until new meds come along.  So even if he clears the virus in two weeks, he’ll still finish the full treatment.  Then they test again six months after the treatment is completely done, to see if the virus has come back.  If not, he gets to hear the magic word:  CURED.

It’s early on in the treatment, so I’ll keep updating as it progresses and we see how it affects him.  Right now, though, he has a really positive, upbeat attitude.  He’s actually off at my mom’s house right now, painting her kitchen!  I’m going to see if I can get him to let me help tomorrow…usually he claims there’s not enough room for two people to paint (he even tried saying that when we painted the family room downstairs, which is HUGE!) but maybe he’ll relent and let me slap some paint on the walls.  I kind of like that he’s still feeling feisty…let’s hope it stays this way!

Go, Dave!!  :) (Paige, Dave & Wendi at the 2010 HLAA convention)

Go, Dave!! 🙂
(Paige, Dave & Wendi at the 2010 HLAA convention)

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