“It says here that I should eat ice cream every day.” Dave looked up from his computer screen and smiled.
I have to give him points for trying – ice cream every day would take the sting out of going through treatment for Hepatitis C a second time.
His new treatment starts next week, and it goes for three months this time. He’ll be taking a new drug, Harvoni (I keep wanting to call it Havarti, like the cheese) along with his old friend Ribavirin. No interferon shots this time, thank God. We couldn’t remember if he had to take the drugs with a high-fat snack the way he did last time, so he was doing research to refresh his memory. (Turns out it was the boceprevir that required the high-fat snack, so no requisite Hershey bars or peanut butter this time around.)
This regimen should have way less side effects, although there will still be a few from the Ribavirin. (If he was treatment-naïve, he would just take the Harvoni which has very few side effects.) We’ll be making bi-weekly trips to Fort Wayne to pick up his medicine (he gets a two week supply each time) and have them check his labs.
I didn’t mean to let so much time go by without an update. I was taking an online class on how to make money from your writing, and it ended this month. By the end of the class I was feeling like I just wanted to write here and not try to actually make any money by writing – and then I stopped writing here, go figure. It was pretty eye-opening, though, and I’m glad I took the class. I had a lot of misconceived notions about writing for magazines, for instance. I didn’t realize that you don’t actually write a piece and submit it (unless it’s an essay, which I discovered is the type of writing I prefer). A magazine article is just an idea when you send a query to a magazine – ‘Hey, how about I write on this subject for you?’ – and then you wait to find out if anyone is interested. If they are, then you write the article.
And a book – well, my memoir has been stalled for months, so it’s not like I was on the verge of being done or anything, but I was still thinking of book publishing as ‘write a book, submit the manuscript and hope it gets accepted, if it does then the publisher promotes it and you hope people buy it.’ No sir. It’s more like, write a book and then try to convince a publisher to accept it by showing how popular you are and all the things YOU can do to promote it. I have NO desire to try to sell a book. I don’t want to have to give talks or readings, I don’t want to do interviews, I don’t want to spend my days begging my friends to buy my book. I just want to write, man. So I figured, screw it, I’m just going to satisfy my urge to write through my blog. And then, like I said, I stopped writing.
I was very caught up in the whole ‘I am not a writer if I don’t get paid for what I write’ thing and it was really messing with my head. So I backed off of everything for a while, I guess.
In other exciting news, sort of related to writing, I got a Fitbit last week. Influenster offered me the eBay Guide badge, where you earn a $25 eBay gift card by writing two eBay guides. It took forever and a day to have both of the guides accepted (they read them and approve them one at a time) and then to actually get the gift card, which was sent in the mail. While I was trying to figure out what to spend it on, they offered me an eBay Guide VIP badge for another $25 gift card. I decided to do two more guides, and held onto the first gift card so I could combine them. The second gift card came via email and voila, I had $50 to spend on eBay.
I had done some research on the Fitbit, and decided on either the Flex or the Charge. I don’t use it for phone stuff so the only thing the Charge really offered that the Flex didn’t have was an on-screen display. I did some pricing and realized I could get the Flex for very little of my own money, so that sealed my decision. I finally snagged a slate blue Fitbit Flex for $60 with free shipping, used my $50 in gift cards and got myself a Fitbit for the low, low out-of-my-pocket price of $10.
I am properly obsessed right now, and I do find myself extending my workouts to get in at least 10,000 steps a day if I can. I don’t really bother with the calorie portion of the app because I use the Livestrong MyPlate website to track my calories, but I do take note of the calories I supposedly burned (according to Fitbit) versus the calories I consumed (according to MyPlate).
I am holding steady with my weight, and I just have seven measly pounds to get to my ultimate, in-my-dreams goal. However, I’ve been within 4 to 7 pounds of that goal for nearly a year now. Maybe the Fitbit will take me over the top. If nothing else, I’ll be more active. Win, win!
Now I’ve gotten a third eBay Guide badge, the VIP Plus, for another $25 gift card. I completed those guides and they were accepted right away, so I’m waiting for the gift card (it usually takes a few weeks). Let me just say, finding topics that I could write on was really hard. You have to use the Influenster topic suggestion tool and use something from there. You click on this ‘inspire me’ button and it spins around and throws out a topic. Most of them were for things I’d never even heard of, or had no idea what to write about (how to replace a manual transmission; pricing Pokemon cards; birds of Asia). I lucked out with a couple of candle topics, one on canning, DIY hair stuff, things like that. It took a lot of clicking to get there, though.
I think we are finally ready to give the garden a go. Dave is out burning the brush pile right now; it has to go because it’s currently in the area we plan to till. Well, I think we may have someone come in and do the tilling for us. We’ve figured the cost of renting a tiller AND a truck (because we can’t fit the tiller in our Hyundai Sonata), and it may be cheaper just to pay someone to come do it for us with their own equipment. One way or another, though, the garden area should be prepared in the next couple of weeks and we can finally begin planting. One more thing – we finally started a compost pile. I’ve never had one, so I keep having to dig through the trash to pull out vegetable peelings, egg shells and the like.
We will miss this little house when we move on, but it won’t be until 2016 at the earliest. Last year was so full of trauma and upheaval, and we are looking forward to just staying put for this year. It is so nice to wake up every day feeling relaxed, wondering where the day will take us. Every day we find new flowers coming up, new buds on the trees. I’m already looking forward to mulberries and raspberries.
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!
We headed off to Dave’s 12 week appointment at the Hepatitis C clinic feeling a little unsure of things. We didn’t know if we might catch a slightly judgmental attitude because he went off the treatment after they tried to help with the different GERD medication. Dave had called Mita on Monday to let her know he had stopped the treatment again, and we never heard back from her.
“Now, if Mita yells at you, just leave the room,” he joked, as we got closer to the hospital. I knew he was just teasing, but I admit I was slightly nervous about this visit.
When we were about 10 minutes away, I said, “I guess you didn’t need to get there an hour early for labs, since it doesn’t really matter anymore.” Normally he tries to get to the lab around 8 am so they have his results back by the time his 9:00 appointment with Mita rolls around. They use the lab results to tweak the Ribavirin and PEG-interferon dosages, if necessary.
“What?” Dave was shocked. He looked at the clock; it was around 8:30 at this point. “Oh my God…I didn’t even think about that. I was thinking the appointment was at 10:00 and we had plenty of time!” After freaking out for a couple minutes, he just laughed at himself. There was nothing we could do at this point, and we would still get there in time to go to the lab before the appointment. They just might not get the results back in time. Since he was off the meds anyway, what difference did it make?
As we walked in, it was cutting it pretty close – just about 10 minutes to 9:00. Dave decided we should just go up to the Hep C clinic floor and he could do the labs afterward. We got up there and the waiting room chairs were filled up – a husband/wife couple we’d never seen before, and one guy that was in the classes with Dave. We don’t see him all the time because he lives far away and does some of his appointments at a location closer to his house. We chatted with him a little bit and it turned out that he had cleared the virus as well. So of the three people in the class (Dave, Mr. S and the lives-far-away guy) Dave was the only one yet to get the ‘all-clear’ on his viral load. This is a little ironic since he has the type of 1a virus that is supposed to respond the best to treatment. Of course, he may have cleared the virus now…we won’t know until his test results come back next week. But the other two guys cleared first, obviously, since they already knew they were clear. We congratulated our faraway friend and waved goodbye as he left.
Mita smiled and waved from her office, so that put us at ease. She came out to let Dave know that he would be seeing the doctor this time, and he wouldn’t be in until 10 am. Dave asked if he should go back down to the lab, since he hadn’t had time earlier, and she told us to go on down.
After his labs were done and we waited for a while, we headed back up. I had never met Dr. N before – the one time I didn’t go with Dave was the one other time he had an appointment with him. Mita joined us for the appointment. Dr. N started out by asking Dave about the GERD symptoms, so Dave gave him all the details of how it was affecting him, and explained that the new medicine was pretty much the same, if not worse. He looked through Dave’s records and confirmed that Dave was a candidate for fundoplication surgery to help with the hiatal hernia, which is the main issue. Thanks to the GERD medicines Dave already takes, he has no problem with acid reflux. But the hernia was making food and the Hep C medicines wash back up into his esophagus.
The doctor scheduled Dave for a surgery consult, so he goes for that in one month. From there, he turned to the lab results and made a comment about Dave’s thyroid level. He asked Dave how he was taking the thyroid medicine, since it needs to be taken an hour before you eat. Dave explained that he gets up every day at 5 am and takes his thyroid medicine. Then he would eat a snack at 6 am, before his dose of Victrelis and Ribavirin. He was very, very careful about taking the thyroid medicine properly because he knew the Hep C meds could mess with his thyroid levels.
“Well, obviously the Hepatitis C medicines were preventing your thyroid medicine from being properly absorbed,” the doctor continued. “That happens sometimes, and your level is really high.” To be honest, we’d forgotten about the thyroid issue. It was mentioned at the first class, and they checked Dave’s thyroid values at the end of January, before he started treatment. Everything was fine, and it was never mentioned again. Apparently they don’t test the thyroid again until this three month visit.
I was sitting behind the doctor so I did miss some of what was being said. At one point I could tell they were talking about medication dosages and I asked him to clarify – was he talking about the thyroid medicine? I thought he was telling Dave they were going to increase his Synthroid dosage. After he explained that he was talking about the GERD medicine, I asked him if Dave’s Synthroid dose would be changed since his thyroid level was high. He said no, just keep taking the same dosage and the level would probably come down on its own since he’s no longer on the Hep C meds. He’s getting his thyroid re-tested in a month.
The general feeling from the whole visit was one of compassion and a willingness to work with Dave to help him feel better in general. There was no sense of ‘Why didn’t you try harder?’ or ‘Why didn’t you just stay on the treatment even with the side effects?’ The impression we got, from the doctor’s reaction to Dave’s thyroid level, was that he probably would have been taken off the Hep C meds even if he hadn’t had the issues with the Victrelis burning his throat and lips.
Ironically, talk of the Hep C treatment was very minimal during this visit. There was no mention of future treatment plans or any concern about his viral load at all. Pretty much the only thing that was discussed was the fundoplication surgery and the thyroid issue. Towards the end of the visit I finally asked if they would be testing his Hep C viral load now and in the future. “Oh yes, it’s very possible that you cleared the virus, so we’ll re-test you in three months to see what’s happening,” the doctor explained. “If you’re clear now, there’s a chance you might still be clear then. I doubt it, but we’ll see.” Mita then reminded Dave to call her next week to check on the current results of his viral load count.
They didn’t sound optimistic for it to stay clear if, indeed, he has cleared the virus by now. But even if it does come back, at least he’ll have knocked it back a bit while we wait for newer medicines to hit the market. Luckily, there are LOTS of drugs for Hep C in development right now, so we’re optimistic that if he needs them in the future, he’ll have some new options (most likely without the use of the PEG-interferon injection). If you’re curious, this is a great article on all the Hepatitis C drugs currently in trials and what’s going on in the industry: http://www.pipelinereport.org/2013/hcv
Dave wanted a copy of that morning’s lab tests, so we went down to the records department to request them. After we got the envelope, Dave handed it to me while he went to the bathroom. I couldn’t wait, so I pulled out the results and scanned them.
When he came back out, I said, “Hon…did you know your TSH is 77? Seventy-seven! The high range of normal on this sheet is 3.74!”
He grabbed the paper from me and stopped walking so he could read. I could see him looking back and forth between his TSH number and the range of normal printed to the right of it. I knew how he felt – when I first looked at it, I thought I was seeing it wrong. My first instinct was to skip past the decimal point in the 3.74 and read it as 374. I had to keep staring at it to realize that no, the high range of ‘normal’ is less than four, and his TSH is 77. Good grief!
Of course, we got all animated and talked about this for the whole drive home. It explained so much. The first thing we did when we walked in the house was turn on our computers and look up the symptoms of hypothyroidism. We kept reading threads where people would freak out if their TSH was something like 7 or 10, and they all talked about how they could barely function at that level – they were so tired, etc. Two of the biggest symptoms are weight gain and fatigue, and that completely explains why Dave has been so, so exhausted and why he gained 15 pounds in the space of a month. I mean, sure, you expect to gain weight when you have to have a snack with 20 grams of fat to go along with your Victrelis pills, three times every day. But 15 pounds in a month? That was a bit much.
Now Dave naps when he feels like he needs to, and I think he feels less guilty about it because he knows there’s a medical reason for him being tired. His GERD and hiatal hernia symptoms are back to normal; the Hepatitis C meds were obviously a main culprit. We’re counting down the days until his next TSH level is tested (last day of July) so we can see how far it’s come down. We really have no idea how long it will take for it to return to normal, or if it ever will without a change in Synthroid dosage.
We started walking in the mornings again (while Dave has the most energy) and we did stop the 30 Day Shred workout – that was just a bit too much. Easy does it! This is pretty much the end of his Hep C chapter, unless he needs to be re-treated in the future. Things are slowly getting back to normal.
As far as Dave’s Hep C treatment goes, this past week has been a roller coaster ride. Up until my last update at his eight week visit, things had been pretty tolerable for him. He met with the attending doctor and Mita, the nurse practitioner we’ve been seeing at every visit, and updated them on his side effects and how he was handling everything. Things were going well enough that they told him he didn’t need to come back in two weeks like he had been; he could wait for a month before his next blood draw and refill on his meds.
His viral load from the eight week visit was 4,000 – down from 4 million when he first started treatment in April of this year.
This past week, though, things were getting grim. I noticed most days he was very quiet and obviously not feeling well – he was sleeping a lot and just seemed ‘off’ to me. Since we spend all day, every day together, it’s very noticeable to me if he isn’t feeling well or is in a bad mood or whatever. Every now and then he would say that the metallic taste from the Victrelis was really bad, and the medicine was coming back up in his throat. He said it tasted like he’d just swallowed a handful of fertilizer. We went in search of hard candy to try to help with the nasty taste, per Mita’s recommendation, and he got a few different flavors.
On Wednesday of this week I woke up to find Dave in a really foul mood. He was furious and fed up; he told me he’d been up in the middle of the night dealing with the Victrelis coming back up into his throat. It was burning his esophagus and his lips; he had been using this concoction of Lidocaine and Mylanta on his lips to try to protect and soothe them, but they were blistered and he was really in pain. The skin on his lips has always been thin and sensitive, originally from the GVH (graft-versus-host) from his bone marrow transplant, and then aggravated by the reflux and GERD he also suffers from.
“That’s it, I’m not doing this anymore,” he fumed. “I stopped treatment.”
Normally he starts his day at 6 am with a dose of Ribavirin and a dose of Victrelis, seven pills in all. He had skipped this dose.
Dave is not a complainer. He’s not one of those guys who gets a cold and then lies around, sniffling and feeling sorry for himself. He isn’t a martyr either; he’s just very matter of fact about medical stuff, having survived chemotherapy and a bone marrow transplant in the 90s. He came through that and now everything else kind of pales in comparison. And he hadn’t been complaining about the Hep C treatment up until now, other than good-naturedly joking about being mad that he’s gained weight instead of lost. So when he told me he’d made the decision to stop taking his medication, I knew it was serious. If it was bad enough to make him stop the treatment, then it was pretty damn bad.
Dave is not one to feel cowed by doctors. After his bone marrow transplant was done, they told him he needed a series of five shots of chemo into his spinal column. The first two weren’t too bad, but the third just did him in. For 22 hours he had an excruciating migraine headache; he vomited every 20 minutes for the entire 22 hours. After that, he told them, “No more.” He refused to let them give him any more injections, and he’s here, 20 years later, to tell the tale. I’m the type to be more intimidated by doctors; it’s only been recently that I refused to take a medication my doctor wanted to prescribe. I still have that fear of authority figures that was instilled in me as a kid; Dave could just give a shit, basically.
I asked him to tell me more about what was happening to make him stop the treatment, and I found out that he’d been dealing with the Victrelis coming up in his throat nearly every night for days on end. His lips had been blistered and sore for over a week; he just hadn’t told me. Although he takes all kinds of medication for GERD, he also has a hiatal hernia that was never repaired, so food tends to come back up into his throat. The medications help the acid aspect of things, but that’s not what he’s dealing with – it’s the actual food and medication coming back up into his throat because of the hernia. (He was supposed to have surgery to correct it years ago, and then the VA just kind of dropped the whole thing…after he’d gone for multitudes of tests over the course of a year and a half, showing that he qualified for the surgery.)
After we talked for a while, I recommended that he call Mita to let her know what was going on and that he was stopping treatment. After he explained to her what was going on and how the medication was affecting him (his lips were bad enough that he could barely talk or eat), she agreed that he should stop the treatment. His 12 week appointment was coming up (the first week of July) and we would meet with her after his lab visit. Since it was the end of his treatment, she ordered some extra blood work.
The difference was really obvious; Dave was already feeling better, having not taken his medication that morning. He was so happy and relieved to be stopping the treatment.
An hour or so later, the phone rang; it was Mita. She wondered if a stronger GERD medication might help him. After he explained that he wasn’t having trouble with acid reflux but rather the medication itself washing back into his esophagus because of the hiatal hernia, she agreed that there wasn’t much he could do other than surgery. About 30 minutes after that phone call, we got another call from the VA hospital. This time it was someone from the GI department (or the pharmacy; we couldn’t tell because of their heavy accent and their phone cutting out enough that even the captioner couldn’t tell what they were saying). They wanted to put Dave on a different medication, since his viral load was so low and he was responding so well to the treatment. They said that it was an expensive medication and not one they normally prescribe, but they thought it might help. (It turned out to be generic Protonix, a PPI; Dave was already on generic Prilosec and it wasn’t helping.)
After speaking to this lady for a while, Dave agreed to give it a try. He wasn’t happy about it, but maybe this medication would do the trick. If it wasn’t for this one extreme side effect, he didn’t mind being on the Hep C regimen. We arranged to go to the VA hospital the next day to pick up the new medication, and Dave confirmed that he was continuing his treatment. He took his afternoon, dinner and evening doses and ended up just missing the one morning dose.
I asked him to explain what the treatment is like for him, since up until now I’ve been speaking for him. This is what he had to say:
The beginning 4 weeks of treatment was not bad: one shot of Interferon on Wednesdays and 3 capsules of Ribavirin twice a day. The day after the shot could be a little iffy but bearable.
After a month of this, they added the Victrelis which was 4 capsules three times a day.
My day would start at 5 am when I would take my thyroid medicine an hour before anything else.
The Ribavirin and the Victrelis both need to be taken about 20 minutes after you’ve eaten something with around 20 grams of fat; it helps with the absorption and helps minimize the side effects. I try to go with a couple of eggs and a bowl of cottage cheese. I was doing a tablespoon of coconut oil (14 g fat) but that got old quickly.
Seven capsules to start the day; usually the morning had less side effects than other times.
At 2 pm I had to eat another high fat meal and then take 4 more Victrelis. More times than not, I would get some of the medicine coming back up because of GERD. Oh, almost forgot, I also take two 20mg of Prilosec twice a day and a Tagamet before bed. They keep the acid component of the GERD down but don’t stop the reflux, which results in a constant nagging cough.
At 6 pm I take the Ribavirin again with dinner; not too bad.
At 10 pm it’s time to take the last 4 Victrelis of the day. We had to get creative with the fat for this because the number one rule with GERD is *DO NOT EAT BEFORE GOING TO BED*. Since I have to, we got some Reeses Peanut Butter Bars that have 14 grams of fat and not a lot of volume. Not ideal, but still better than most things I’ve tried.
In the last week something changed and the nighttime reflux has been incredibly bad. The medicine dissolves and then trickles back up while I’m sleeping, so when I wake up it’s like I have a mouthful of fertilizer. Yum.
The doctor has changed my GERD meds to something stronger but, ironically, this has just made it worse.
* * * * *
As he said, he’s been on the new medication for five days now and it’s not helping; he’s actually having worse symptoms that he did with the Prilosec. He keeps his lips numbed with the Lidocaine/Mylanta mixture, and I’ve re-worked our dinner menus so that we aren’t eating anything with tomato or things heavy in citric acid (lemon, pineapple). He was willing to give this new medicine a shot but at this point, he’s planning to stop treatment again on Wednesday, which is his next appointment with Mita. That way he can talk to her in person about the side effects and the fact that the new GERD medication isn’t helping.
He’s hoping that he will have cleared the virus by Wednesday. Normally that doesn’t mean that you stop treatment; you still continue on until either 28 or 48 weeks has passed (based on whether you’ve had treatment before, have cirrhosis or not, and how early you cleared the virus). They re-check your viral load six months after the end of your treatment to make sure the virus is still gone. This is most likely what they’ll do with Dave – re-test his blood in January 2014 to see what’s happening. If the virus has come back, he’ll have to wait until they have a new treatment protocol available through the VA before he can go through it again.
As always, we’ll keep everyone posted as things progress.
As of yesterday, Dave’s been on his Hep C treatment for two months. For the past two months, he’s been making the trip to the VA hospital (about 45 minutes away by car) to get his blood drawn, check in with Mita (his nurse practitioner) and pick up his meds for the next two weeks.
We have the routine down pat: Leave the house around 7:15 am, get to the hospital around 8:00 and go straight to the lab. Pull a number and wait until your number is called. Get your blood drawn (never a problem for Dave, whose veins are a phlebotomist’s dream) and then find a way to kill some time until the 9:00 appointment with Mita.
When we got up to the 13th floor yesterday, Mr. S was already in the waiting area outside Mita’s office. He’s very soft spoken, with just a touch of an accent, so I make sure to read his lips carefully when we chat. It takes a few minutes of talking with him to get used to the volume of his voice and the cadence of his speech, and then it gets easier for me to understand. Dave still has a hard time hearing and understanding him; he will usually sit very close to Mr. S and lean in when he talks to hear him better. (Mr. S knows we both have hearing loss; hopefully he realizes that’s why Dave always leans toward him when he talks.)
I wasn’t feeling well when Dave had his six week visit so I didn’t go with (the only appointment I’ve missed so far) but Dave had filled me in on how Mr. S was doing. (Apparently they lowered his Interferon dosage a second time.) I asked Dave how his viral count was coming along and he said he didn’t even think to ask. So I made sure to ask yesterday – and Mr. S has cleared the virus! (I think he said he cleared it at the six week point.) This is awesome news – he is on his second round of treatment because the first treatment didn’t work. It gave us even more hope that Dave will get good news when we get his next viral load count!
Mita called us back to an exam room and another doctor was there as well. I got a little lost amongst the introductions and wasn’t quite sure why she was there; I assumed she was visiting or maybe in training or something (I’m used to that at my audiologist’s office) but Dave told me later that she’s a new attending for the GI/liver department. She spent quite a while talking with both of us, and Dave explained his history as far as the leukemia and bone marrow transplant that he had in 1993. She examined him and then said his blood work looked good; it showed that he might be a little anemic (but nothing worrisome) and his platelets were good too. Because everything has been stable for him, they kept his medication dosages the same and…drum roll, please…he gets to wait four weeks before his next appointment!
I did ask the attending if this eight week viral load count is the ‘magic number’ and she said it’s actually the 12 week count. I was under the impression that if his number was under 100 at eight weeks, he’d have 28 weeks of treatment. The attending made it sound like the 12 week number would be the determining factor, and then she said 24 weeks of treatment (instead of 28). So now I’m a little confused; I know I heard Mita correctly when we were in the classes but I guess we’ll find out for sure when Dave has his July 3 (12 week) appointment. Either way, the viral load number wasn’t back yet because the in-house lab doesn’t process that test; they have to send it to an outside lab and it usually takes five to seven days to get the results. We’ll know more next week.
From there, we went down to the outpatient pharmacy to pick up Dave’s meds. His name wasn’t showing on the board yet so we went out for a walk to kill some time. When we came back, his name was listed and we knew his meds were ready so he got in line and I sat down in the waiting room. After a few minutes, I looked up and saw that Dave was talking to our neighbor. It was such a weird coincidence, running into him at the VA! After he turned away from Dave, he caught my eye and called across the room to me. I asked how he was doing and I could swear he said he’d had a stroke a couple weeks ago (I still don’t know if I heard him correctly); I got up to move closer to him so we could talk without shouting across the room. He said he was doing better and that his daughter was with him; I turned and saw her sitting behind me so I greeted her as well. (She babysat my kids a couple of times back in the late 90s and I haven’t really seen her since then – I didn’t even recognize her all grown up!)
We got on the subject of our deck (he was complimenting the work Dave did on the stain) and I was talking about how much work it turned out to be. A man in a wheelchair nearby chimed in and said that he used to seal and stain decks for a living (and that all the women said their husbands called him to do it after they did it one time, saying they would never do it again…I can believe that).
After our neighbor and his daughter left, I sat down in the chair she vacated which was next to the fellow in the wheelchair. He turned to me and started talking some more, adding, “I’ll talk to anybody!” with a smile. I told him that I had a hearing loss and used to never make casual conversation with people I didn’t know, in case I might have trouble understanding them. He proceeded to tell me a story about how he dated a girl in high school who was deaf in one ear; when they went for walks, she always tried to place him on her ‘good’ side and he resisted until she finally explained why. I had such a nice time chatting with this man while I waited for Dave; at one point he asked me which was my ‘good’ side and I explained that I had finally lost all of my hearing five years ago and got cochlear implants. I finished with, “Now both sides are my good side!”
I always had a rule in waiting rooms and other situations where I was sitting or standing with a bunch of people I didn’t know: Don’t make eye contact. If you avoid looking people in the eye, they generally don’t try to start a conversation with you. It was always my biggest nightmare; a well-meaning, friendly person would make an off-hand comment or try to start a conversation with me and I’d be stuck smiling and doing the Deaf Nod, not understanding a word they said and hoping they weren’t asking me questions (or that I was responding inappropriately).
It’s taken nearly five years but I’m finally starting to shed this long-held habit of mine. I started testing the waters when Dave was with me, so if I missed things he could fill me in. If we were in a store (or watching a demonstration, like at the ReStore a few months back) I would make eye contact and talk to the employees or the product reps. This was my first foray into having a casual conversation when Dave wasn’t there to rescue me.
Later that afternoon, we stopped in a Goodwill store and when we were checking out, the (very friendly) cashier said, pretty much out of nowhere, “I know five words in sign language!” I’m still not sure what prompted her to tell us – if she saw Dave’s hearing aid, maybe. Back in the old days, I would have just smiled at her and not said much of anything in response. This time, I told her that I had gone deaf a few years ago and never really learned sign language, so she probably knew more than I did. We got a good laugh out of that, and I asked where she was taking her classes (because I do still want to take a class if it’s local and affordable). Turns out she’s a college student so she’s taking it through the community college, but we had a good time sharing the few signs we both know (Dave got in the act too, since he knew more than either of us).
I know it doesn’t sound like much to most people, but for me it is really eye-opening to have these fun, casual conversations with people I don’t know. It’s helping me overcome some of my shyness, and giving me confidence as far as my ability to make small talk (something I’ve always been very bad at). Just being able to look people in the eye and not be nervous about them saying something to me is very freeing.
We aren’t able to make it to the Portland Hearing Loss Association of America (HLAA) convention this month, but I can’t wait for the next convention we can get to – it will be awesome to actually talk to the vendors in the Exhibit Hall without being terrified!
A few Sunday afternoon updates from our neck of the woods:
My oldest, Eric, turns 23 tomorrow and that just kind of blows my mind. I mean, I can remember being 23 very well, unlike, say, age five or six. In just two more years, he’ll be the age I was when I got pregnant with him. Which was just a couple years ago, I swear!
We were trying to make plans to get together and celebrate his big day, and since it falls on a Monday that means we really have to plan it for a weekend. We tentatively set it for today, and Paige came out (from her dad’s) a day early. Then Eric couldn’t make it, so we got a bonus weekend with Paige! 🙂 Plans have been tentatively rescheduled for next weekend and fingers have been crossed.
Paige arrived at the train station yesterday brandishing her very own driver’s license. She’s the first of the kids to get one (she turns 19 in August). I noticed a trend with my kids and their friends: very few of them get a driver’s license at age 16. Out of 10 kids, maybe two will have a license and access to a car.
Neither of my kids was interested in driving and getting their license at 16, which is the complete opposite of how I was at that age. In fact, I asked for driving lessons as my 16th birthday gift because I had a late August birthday and would have had to wait until the fall after I turned 16 to take Behind the Wheel in school. So I did it through a driving school that summer, and went on my birthday to get my license.
It was very different back then – I took a class in school during sophomore year, did my (very few, maybe six) hours with the driving school that summer, a little bit of driving with my parents (my mom still talks about how I scared her when I was learning to drive…I don’t think their hearts could take much practice driving with me), took the driving test, passed and got my license. Now if a kid aged 16 wants to get their license , they have to drive a minimum of 50 hours with their parents, and a certain number of hours have to be at night; you have to chart the weather conditions and how far they drove each time. I think both kids got maybe two hours of driving with us, tops, before they just lost interest. Once you turn 18, you don’t need to show all the hours of driving that you do if you’re 16.
Eric moved to the city and gets around via public transportation; a car would be a hassle more than anything right now. He never did bother getting his license. Paige waited it out until she turned 18 and then did some casual driving with her dad to brush up on what she’d learned at school and with us. She took the test yesterday morning and passed on the first try!
Dave’s six week Hepatitis C viral load count was 35,000 … down from 1.6 MILLION just two weeks earlier! The big test is coming up – this Wednesday, eight weeks in. We are really hoping to see the number under 100, so he can do the 28 week treatment instead of 48 weeks. Things are still going well, side-effect wise, with no change from what I reported before. He is, however, really irritated that he hasn’t lost tons of weight. Personally I’m glad he’s not suffering from nausea; after going through two pregnancies with some pretty major morning sickness, I can safely say I’d rather gain weight than constantly feel nauseated and grossed out at the thought/smell of food. (Brushing my teeth made me gag…even the smell of bread baking at the grocery store turned my stomach!)
Dave diligently looks at houses in southwestern Michigan (where we hope to move in the next 18-24 months), daydreaming about what we’d do with each one as far as renovations or putting in a big garden or whatever. He found one today that just blew his mind, and I have to admit that it did look perfect; it made me wish we were in a position to just buy it right NOW. (That’s the only trouble with looking when you aren’t in a position to move yet…you always find The Perfect House and then it becomes The One That Got Away.)
He was showing me the pictures and describing everything, and then he excitedly said, “Really, it’s a plantation, not a house. You would love it. I’d even let you wear the curtains!”
I almost choked on my coffee when he said that; once I got a grip, I couldn’t stop giggling. (This will only be funny to people who used to watch the Carol Burnett show. It’s my favorite skit!)
Yesterday we got the results from Dave’s four week labs, including another viral load count. The first test, at two weeks, showed no change. It was actually higher than the last viral load test he had, at the end of January. I figured his viral load most likely went up between the end of January and the start of his treatment in early April, which is why the test done two weeks into treatment showed a higher number than the January test.
Well, we finally got some GOOD news. His two week viral count was over 4 million. His four week count, the one taken last week right before he started Victrelis, was 1.6 million. !!!! That’s a huge drop in two weeks; when you consider that Victrelis is supposed to be the new wonder drug that really packs a whollop, it gives us confidence that his next test, at six weeks (with two weeks of Victrelis under his belt) will be amazing. We’re staying positive and confident here!
I have to confess, I was really worried about him starting this treatment. There are a lot of horror stories out there, and he had the added unknown of being a leukemia survivor and the recipient of a bone marrow transplant. Even though his doctors at the VA have all coordinated for his treatment and they were confident that his body could handle it, it still scared me. I was prepared for him to spend 6 to 11 months basically just sleeping, dealing with side effects, and taking medicine.
So far since he started treatment five weeks ago, he’s painted Mom’s kitchen, replaced the starter and battery on our car, tore out the carpet and put down laminate flooring in our bedroom (good grief, what an improvement!) and he’s currently painting a new shelf/stand for a TV downstairs. He’s making me feel lazy!
In the interest of full disclosure, he does admit that a big outpouring of physical energy will leave him pretty exhausted for a while afterward. He mowed the lawn yesterday morning and was crashed out on the couch in the afternoon (and falling asleep by 9:30 that night). It took him about two days to recover from the long car drive to Michigan, and the same for replacing the flooring in the bedroom.
He does have days where he wakes up and just has no energy. There’s no rhyme or reason to it – it just happens, and he has to accept that it will be a day when he’s spending most of the day napping. One of the bigger frustrations for him is that taking a nap doesn’t recharge his batteries the way it used to; he often wakes up feeling just as wiped out as he did when he went to sleep. So far, though, he hasn’t had a bunch of bad days in a row. He usually bounces back after a day of downtime. I can tell just by looking at his eyes if he’s fighting to stay upright or if he’s feeling full of piss and vinegar.
Even though our checkbook wouldn’t agree, it really is a good thing that the business is slower now and he can just check out and relax all day if he needs to. I’m so glad that he’s in a position to be able to do as his body dictates and sleep when and if it’s required, or go out and do the projects and activities he wants to do.
Even though he’s dealing with random tiredness, there have been positive physical changes. For about six months before he started treatment for his Hepatitis C, he was getting pains in the area of his liver – pains that were fairly new and starting to bother him. After he’d been on treatment for three or four weeks, he noticed the pain was completely gone. That was right after we got the viral load test results that didn’t show any changes. Instead of being discouraged, he told me that he KNEW good things were happening because that pain was gone.
Since he started Victrelis, he hasn’t had a rash. He had one day of nausea, the morning after his 10 pm PEG-interferon injection and Victrelis dose; he thinks it was just the combination of both together that was a bit much to handle. Every now and then he does notice a metallic taste in his mouth, so he’ll reach for hard candy or candied ginger to get rid of it.
We really believe he’ll qualify for the 28 week treatment (versus 48 weeks) so: Five weeks down, 23 weeks to go!
It’s been a month of Hepatitis C treatment for Dave and so far, so good. We had our final class this morning to learn about the third medicine he just started taking today. It’s called Victrelis (boceprevir) and he takes four capsules every eight hours. This class was quite a bit shorter; the side effects are basically the same as for Ribavirin, with the addition of a possible rash or metallic taste in the mouth.
There are two other guys in this group along with Dave, but usually we only see one of the guys, Mr. S (and his wife) when Dave goes for labs every other week. The other guy lives pretty far away so I believe he gets his labs done at a clinic closer to his house. We do see him when the guys either have a class or get their next dose of medicine. So far everyone seems to be tolerating the medicine well, with no major side effects. Mr. S has had his Pegasys dosage lowered because of low platelets but that’s about it. So it’s encouraging that everyone is still going strong and hanging in there!
Dave’s numbers are all really good so far – his blood sugar is normal, his platelets went UP (!) and his hemoglobin is holding steady. All his dosages are staying the same for now. At this point, he’s now taking all the medications for his treatment; no new ones will be added in. (Thank God, because it’s already getting confusing keeping track of everything!)
He gets up at 5 am and takes his thyroid pill, since it has to be taken well before he eats. Then he takes three Ribavirin capsules and four Victrelis capsules at 6 am, with food (something with fat, to help the medicine be absorbed into his system). Another four Victrelis capsules at 2 pm, again with food that contains fat. Three Ribavirin capsules at 6 pm (usually right after or during dinner, to take care of the ‘take with food’ requirement). And finally, four more Victrelis capsules at 10 pm with, you guessed it, a bedtime fat-containing snack. He was jokingly complaining about the fact that he’ll never lose weight with all this food he has to eat, all day long! Oh, let’s not forget the PEG-Interferon shot he gives himself every Wednesday night at 10 pm (take it out of the fridge at nine so it can come to room temperature first).
And they aren’t kidding about the timing of all this, and making sure you really take your meds every day. If you miss even one day of the Victrelis medication, you are withdrawn from treatment and you can’t restart it – you have to wait for a new treatment protocol to come along for the VA, probably in 2015, because this one will no longer work.
Right now there’s been no change in his viral load – he got his first PCR test two weeks into treatment and we got the results last week, since they take a week to be processed. He got another PCR test today, so we’ll find out next week if there’s been any change yet. The big one is a month from now, when he gets his eight week test. If he clears the virus by then, it cuts 20 weeks off his treatment time. That’s huge!
That pretty much covers everything so far…we just need to see if the Victrelis will bring any nasty side effects with it. I expect Dave will be feeling pretty tired tomorrow since tonight is his PEG-interferon shot, plus he started the Victrelis today so his body will be adjusting to all this new stuff. (And he got his second Hep A & B vaccination today – he hates those shots! Luckily there’s only one more, five months from now.)
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!
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!
Dave and I were watching The Carrie Diaries a week or so ago, and in that episode Carrie told her boyfriend Sebastian that she wanted to break up. So they did. Later on, she’s telling her friend about it and is shocked that he didn’t fight for her – he just agreed when she suggested they break up. I was nodding in agreement with her as she said this, while Dave scoffed in disgust. I turned to him and paused the show.
“You know, that really is how many girls think.”
He looked stunned, and I continued. “The guy is supposed to know she doesn’t really mean it. It’s just like a test for him – will he fight for her and their relationship? Or will he just agree, which means he didn’t care enough.”
Dave disagreed, vehemently. “NO. If she says she wants to break up, she should mean it. Why would he stay with her if she wants to break up?!”
I narrowed my eyes and challenged him. “So if we got in a fight over something stupid, and in the heat of the moment I yelled and said I wanted a divorce, you would just DO IT? You wouldn’t fight for us?”
He shrugged. “Yeah. If tell me you want a divorce, then I assume you really want a divorce. Don’t say it if you don’t mean it.”
I shook my head. “No, you should know I don’t really mean it and that people say things they don’t mean when they’re angry. If you told me you wanted a divorce, I would never just accept it. I would do everything I could to keep our marriage together!”
The show languished on ‘pause’ as we continued, although at this point we were kind of laughing at each other for getting so worked up. Finally, I smacked Dave on the arm and told him he’s not allowed to ever agree if I tell him I want a divorce. He grinned and acquiesced. Luckily, I have long since outgrown my tendency to throw down huge ultimatums in the middle of a fight and, also luckily, we usually don’t fight. We might have heated discussions, or disagree for a while before coming to a compromise, but it is very, very rare for us to have an actual yelling-at-each-other fight. Still, it’s good to know that he’s so very literal!
In other news, last night I was playing Words With Friends when I heard Dave call out, “Honey? Come here!” from the bathroom. I ran down the hall, hoping he was going to deliver the news I wanted to hear. He proudly wielded his strainer, which held…a dark gray kidney stone, much MUCH larger than I expected it to be. I mean, I thought we might actually miss the thing, you know? This looked like he’d plucked a piece of gravel from the road and tossed it in the strainer just to mess with me.
You know it’s true love when you’re high-fiving your husband and admiring the kidney stone he just passed at 11 pm.
It’s a good thing he passed it on his own, because when he called to make the appointment with Urology they told him the soonest they could get him in was May 20th! Lord have mercy.
He kind of sighed this morning and told me, “I feel like I’ve been cheated. I’ll never really know what the first week of Hep C treatment is supposed to be like…the kidney stone stole the spotlight!”
In one week he has not only started his Hep C treatment, passed a kidney stone and finished my mom’s kitchen (it looks great, mom!) but now our car won’t start [heavy sigh]. We assumed the battery ran down because when we got in the car the morning after his hospital visit, it wouldn’t start. I figured maybe we didn’t shut one of the doors all the way, since it was so late and we were both really tired. Dave put the battery charger on and we took our other car over to my mom’s.
But yesterday morning, when he was heading over there to finish up, it still wouldn’t start. So he spent the morning taking the car apart, trying to figure out what was going on. I suggested that we have it towed and looked at in a shop. He looked as if I had just suggested we remove our clothing and do an interpretive dance on the sidewalk. “No, of course I can fix it. It just takes so damn long to actually get to the starter on these newer cars!” He complained about clamps that needed to be removed and I nodded supportively. I asked if he needed my help. He made a little snort of laughter and went back to the garage, and I breathed a sigh of relief because, really, I know nothing about cars.
So now we have a new starter ordered and he’s going to pick it up in about a half hour. After this, it would be helpful if we could get a little break on the crises. *fingers crossed*