Monthly Archives: June 2013
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.
I’ve always enjoyed cooking, but I wasn’t always that good at it. I was enthusiastic, yes, but I didn’t have enough practice or years of tasting behind me. I cooked here and there (mainly sweets) when I lived at home, and I was just shy of 21 when I got married the first time. I was still a very picky eater; corn and green beans were the only vegetables I didn’t consider to be suspicious.
I copied some recipes from my mom and had a few things I made regularly for dinner. The first cookbook I remember buying was The Frugal Gourmet – I liked the word ‘frugal’ in the title. I learned how to make a decent Chicken Marsala and how to make chicken and beef stock. I followed recipes precisely.
For all those years, cooking was just a thing I did – I was working full time and didn’t feel like experimenting or devoting a lot of time to cooking once I got home. Then the kids came along, and dinner became an afterthought. Once I became a single mom, working full time, dinner for me was always after the kids were fed and in bed, and it often reflected my exhaustion – usually a bowl of cereal or soup.
It wasn’t until the kids grew older, I was remarried and working from home that I started getting interested in food beyond what I absolutely needed to do to keep my family nourished. I have to give some credit to food blogs and cooking shows – I was introduced to so many ingredients I’d never heard of or never thought to cook with. Things like fennel, jicama, leeks, kale…and I have to sheepishly admit that it wasn’t until just a couple years ago that I cooked with fresh mushrooms, broccoli, squash or cauliflower. (I told you I was picky!) The internet filled in when I wasn’t sure how to chop or prepare a certain vegetable. (Bok choy, I’m looking at you.)
I can’t tell you how many nights I was prepared to make a certain meal and then realized I was missing just one crucial ingredient. Those were the nights we ended up ordering takeout. (A local pasta/pizza place kept us fed for a few very busy years in the early days of the candle business. They’ve since gone out of business, probably because we stopped ordering from them when I started cooking more.) There were also nights I planned on making something that I just couldn’t even consider cooking when the day rolled around, usually because it was just too hot to cook.
We were starting to order out just a little too much for my comfort, and I was getting frustrated by the many times my plans to cook were thwarted by missing ingredients. I did get more creative, learning what I could and couldn’t substitute…but sometimes you just NEED that item and nothing else will do. So I decided it was time to get more organized.
What has saved my sanity over the past few years, helped our budget and kept me from recipe burnout and the What the heck should I make for dinner tonight? conundrum is this: A spreadsheet of menus. It took me maybe 30 minutes to initially put together. I sat down with my cookbook and went through all the recipes I knew my family liked. I made sections on the spreadsheet for Beef, Chicken, Grill, Soup, Pasta, and Other. In each section I typed in the names of the recipes that used that main ingredient. (‘Other’ has things like homemade pizza, vegetarian dishes, grilled cheese, breakfast for dinner.) To the left of the recipes, I have the days of the week listed, Monday through Sunday, and a space next to each day where I type in the recipe I’m planning to make.
To plan menus, I open the spreadsheet and I open the weather forecast in my browser. I take a look at the temperatures coming up and plan my weekly menu accordingly. I also have a tab in that spreadsheet that lists all the extra things I have in my freezer – any veggies, meat, etc. that I already have, so I know what I have on hand to work with. If it’s going to be warm but not warm enough to have the A/C on, I pick something that we can cook on the grill, in the slow cooker or oven…basically anything except the gas stovetop, which heats our house up like a bonfire. If it’s going to be really cold, I plug in something warm and hearty like chili, beef stew or soup. I alternate so we aren’t eating chicken three days in a row, and so that at least two or three days are meat-free. Once I nail down the menu for the week, I type a shopping list in another tab of the spreadsheet. By now I have a lot of my recipes memorized, but if not, I reference the recipe and check my cabinets/fridge to make sure I have what I need. Anything missing goes on the shopping list, along with any staples we’re getting low on.
Since I’ve started this, I almost never have a night when I either don’t feel like cooking or can’t make what I planned. I get those meals set ahead of time and don’t have to think about what to make for dinner on a daily basis. The most I might do is switch some meals around if the weather changes drastically or we have something planned that’s going to prevent me from having the time to cook. If I know we have a busy afternoon planned, I’ll plug in a crockpot recipe so I can get dinner started in the morning before we go out. I always have the ingredients I need on hand, and I don’t end up with three bottles of vanilla because I forgot I already had some in the pantry. (Not anymore, anyway.)
If things start getting boring, I check around on my favorite cooking/recipe sites and add some new recipes to the mix. In my quest to try more vegetables and ingredients I’ve never cooked with before, I’ve come across some recipes that are now family favorites. I also signed up to test recipes for Cooks Illustrated, as a way to make myself try new things and practice new cooking techniques.
A big part of what makes cooking so fun is the appreciation of my family. The kids aren’t living at home now but when they did, they never hesitated to rave about a meal they liked (and they still do this when they’re here for dinner). It makes me feel good when they request certain meals; I know now that they have fond memories of mom’s cooking, and that they look forward to the things I make. Dave is my biggest fan, really. He will just stop eating, look at me and say, “This is AMAZING.” He’ll rave about the flavor or the meal in general. Positive reinforcement really works…it’s so much more fun to cook for someone who absolutely appreciates it and lets me know.
I know his praise is genuine because he doesn’t hesitate to tell me when he doesn’t like something; he would never lie and tell me something was tasty just to keep from hurting my feelings. I always warn him when we’re trying a new recipe, “Tell me the truth now, because if you like it then it’s going in the repertoire and you’ll be eating it again!” In other words, if you secretly hate it, you’re going to be stuck eating it again in the future unless you speak up.
I think the biggest complaint I hear from friends and family who don’t like to cook is doing the dishes that it creates. For whatever reason, doing dishes just doesn’t bother me. I find it kind of relaxing. I tend to clean as I go, and Dave is almost always there with me in the kitchen (he’s a great sous-chef) so between the two of us, we have most of the dishes cleaned up before we even sit down to eat. Sometimes we do the whole ‘whoever doesn’t cook is the one who does the dishes’ thing, but since we generally work together on a meal, we work together on doing dishes too.
We don’t always eat fancy, but we do always eat good and yummy. Tonight it’s just homemade sloppy joes (I used to use Manwich until I found a simple, delicious recipe that puts it to shame) with potato wedges roasted in the oven. In the summer, we’ll be eating zucchini and tomatoes in almost everything, as long as our plants thrive. Some days we just throw together a scramble (eggs, diced potatoes, sweet peppers, onions, maybe mushrooms) and call it dinner. Sometimes it’s lasagna – something that seems so fancy but is really very simple to put together. For all of it, though, the key for me is organization. I can’t make that lasagna if there’s no ricotta cheese in the fridge, and the scramble isn’t possible without eggs.
If spreadsheets aren’t your thing, or you just aren’t that into meal planning, I can highly recommend finding a recipe site that lets you search by ingredients. (I know my favorite site, Allrecipes, has this feature, and I’m sure there are others out there too.) If you’re feeling like having a chicken dish with a few key ingredients, you just plug those in and you’ll get a bunch of recipes to choose from. Anything to make dinner time easier, right?
By the way, I found the homemade sloppy joe recipe because I didn’t have Manwich on hand…so sometimes it works out well when an ingredient is missing!
Our finances have waxed and waned over the recent years (more waning than waxing, lately) and with each financial contraction, we’ve made adjustments. It’s the nature of owning your own business, I guess. After nearly 13 years, it’s not as fretful as it was in the beginning; I’m used to having a fluctuating source of income and have learned some ways to deal with the lean times.
We started with small adjustments, like increasing the deductibles on insurance (car, house, medical). Just a little something to save a few bucks here and there. This past year, though, has really been hardcore. All the suggestions I’ve read in articles on budgeting, saving money and being frugal have always seemed just a bit too difficult to me. Cancel cable? Don’t eat out? I couldn’t even imagine giving up the premium channels we had (HBO, Showtime).
But things happen, and you adjust. Things you never thought you could do suddenly become not only possible, but … actually not that hard. It’s like slowly immersing yourself into a cold pool; you dip in your toe and pull it out thinking, “No way.” Then you try again. You leave your toe in the water, and then your whole foot. Little by little, until you’re up to your neck and thinking, “Hey, this isn’t so bad.”
We started by canceling the Costco membership. We mainly had it for the credit card processing merchant account for our business; you had to be a Costco member to get the best rate. We had both kids living at home and buying in bulk seemed to be a good move financially, so we didn’t hesitate to join. But now we have a different merchant account (lower fees, since we process less orders) and the kids are out on their own. There was no real need for us to buy anything in bulk, and canceling the membership saved us $100 per year.
There were some things we were used to buying from Costco, but switching to other brands hasn’t been that bad. I’ve only missed our membership a couple of times so far.
We got rid of the premium channels, and boom, there’s another $32 more per month. After a few months of getting used to that, we stepped further into that cold water and canceled our cable TV entirely. It’s a little more work to find shows that have captions, but it’s much easier than it used to be. It’s been months now and I like having that extra $70 more per month more than I liked having cable.
We haven’t had to suffer food-wise either. We switched to Aldi for the majority of our grocery shopping. We have a store we love with all our hearts, a local store that focuses on a wide variety of fresh produce (Valli Produce – big thumbs up) and has good prices. The prices at Valli are great, but the problem I have is that there’s SO MUCH to choose from. I end up overspending because it’s hard to pass up all the delicious, low-priced options even though I use a shopping list. Aldi’s choices are minute in comparison, so it keeps me in check. There’s so much I can’t get at Aldi though, and the produce prices are high compared to Valli, so I compromise. We’ll shop at Aldi for two weeks in a row, and then Valli. I usually come in under budget on the weeks I go to Aldi, so that leaves extra for my ‘splurge’ week at Valli. Between that and keeping careful track of what I’ve bought so I can utilize everything in the freezer and fridge for recipes, we still eat like kings at a fraction of the price.
Yes, we don’t go out to eat much anymore. We might order a pizza once a month but that’s all we can really afford. It doesn’t feel like such a sacrifice when we’re making really delicious home-cooked meals on the other nights – we really prefer eating our own food, and it’s cheaper.
Our most recent cut was the phone, which we were getting through our cable service. I really fought Dave on this one, because I just didn’t understand what he was proposing. He had been reading about how people were using something along with Google Voice and doing their phone calls that way. He insisted it would work with our two captioned telephones, and we’d save the $40/month we were spending on the phone service through the cable company. I just couldn’t believe what he was saying would really work, and I was resistant to getting rid of our phone number which was really easy to remember. I did a little reading on my own to try to comprehend how it all worked, and although I still don’t understand it well enough to explain it (hence the fuzzy description here), I did read enough comments from other people to believe that it really would do what Dave said it would. I use the phone so little anyway that I finally gave my blessing. I walked into that cold water all the way up to my shoulders.
Now the only thing our cable company provides is our internet service (and no, I’m not getting rid of that). When we move to Michigan, we can take this new phone number with us (if I understand correctly). It was a big adjustment, but the water feels warmer now.
Inch by inch, a quarter here and a dollar there, we’re doing it. It’s not easy, but it’s not impossible.
Anyone who knows me in person or is friends with me on Facebook probably knows that I’m terrified of spiders. I don’t like their sneakiness, I don’t like the way they look, I don’t like how they drop from the ceiling onto our unsuspecting bodies. Everything about them freaks me out, and the larger they are, the larger my screams when I encounter one.
Dave, on the other hand, loves spiders. I mean, loves them to the point where he croons at them, especially the ones I hate the most: the jumping spiders, the ones that look like miniature tarantulas with the added horrific talent of jumping right when you get close to them. Some of these suckers get truly huge and they really, really scare me. I’ve learned the hard way that Dave will NOT kill one of these spiders if he sees them. He tries to trap and release them. Of course, half the time they JUMP and then he can’t find them (while I hyperventilate and make plans to board up the room so we can no longer use it). The other half of the time, his idea of ‘release’ is to open the patio door and toss them out…and then I find the same spider on my ceiling the next day.
What’s really fun is when he gets quiet and then actually kills a spider. That’s how I know it’s one even Dave doesn’t trust. For Dave to kill a spider, it has to be a Bad One.
Generally, I’ll call to Dave and request spider removal service instead of insisting he kill it. This assuages my guilt somewhat, since normally I feel bad about killing anything, even a bug. But if the spider is small and I can easily kill it (i.e., it’s in the bathtub with me [and it should know better] and I can wash it down the drain) then I’ll kill without hesitation.
Other bugs generally get to live, if I find them in our house. We don’t get too many of them – the cats keep the fly population down (and any spiders within their reach, but the spiders in our house tend to hang out on the ceiling). It’s been a while, but we used to get little bees in the house and I have no problem doing catch and release on them. (Dave, on the other hand, HATES flying stinging insects and will dance around in horror while I calmly catch them. At least it makes me feel useful, since he does all the calm spider-catching.)
Beetle bugs, earwigs…they don’t bother me. But what always tugs at my heartstrings is a bug stuck on its back. Usually it’s the little beetle-type bugs that do this. I’ll see one on the floor, waving his little legs in the air, and I just feel so sorry for him. I’ll find a piece of paper for the bug to grab onto and then release it outside. (Sometimes I wonder if this is a worse fate, especially if it’s winter, but my bug survival knowledge is fairly scant.) The other day I found an earwig on his back on the bathroom floor, which was a first. He just looked so pathetic, waving away, and I couldn’t help but rescue him. (June bugs are also notorious for this, but they’re generally outside on our front porch.)
Dave and I were out in the backyard this morning, checking the progress of the garden and herbs. We were admiring the tomato plants that were planted next to the house when we heard a loud thwack. I watched as something black fell into the dirt. I looked up to see if something had fallen from the roof, but there was nothing else up there. Dave said, “It’s a dragonfly!” I looked closer and yes, it was a kind of weird, fat black dragonfly type thing. He was on his back, his legs lazily cycling in the air. “He hit the house – did you hear it?” Dave continued. “I think he’s just stunned right now.”
That dragonfly must have really been moving fast for it to make such a loud noise when it hit our house. We both heard it clearly. Well, I couldn’t stand watching him lie there so I let him grab onto a piece of paper I was holding. He clung for a moment, waving in the breeze, and then took off into the air. We watched him narrowly miss our neighbor’s house and I called after him, “Watch where you’re going!”
In other, semi-bug related news, our grand-hog, Spike (my daughter’s hedgehog) is celebrating his third birthday today. Instead of a cake, he got extra treats – some plain cooked chicken and egg yolk along with his bug delicacy: mealworms. Here he is, chomping away:
I’m not really sure why I woke up early Wednesday morning. I tend to toss from side to side throughout the night, because although I prefer to lay on my right side, it makes my hand fall asleep if I stay that way for long. So instinctively I turn to that side, my hand falls asleep and it wakes me up, and I flip over to my left side. It was during one of my instinctive turn-to-the-right-side moves when something seemed not-right and my eyes flew open.
I stared out into the darkness, trying to figure out why I felt so freaked out. After a few seconds I realized it was really dark, no light at all from my alarm clock or the nightlight that shines into the hallway from the bathroom. Then I realized the room was feeling hot and a little stifling; the fan was off. I sat straight up and said, “Oh CRAP.” The power was out.
I figured my movement and voice would wake Dave up, but he stayed soundly asleep. I got up, put my glasses on and started wandering around the house, trying to find a flashlight. Dave usually keeps one by his computer, so I checked there first. I was fumbling around in the dark, trying to feel for the flashlight, and I couldn’t find it. Then I realized we also keep one in the bathroom, so I grabbed my cell phone (which was on the computer desk) and turned it on as I walked back to get the flashlight.
There were no outage alerts on my phone; I shone the flashlight at the wall clock and saw that it was a little after 3:30. I was starting to wake up a little bit more, making it easier to form coherent thoughts. I checked outside; no storm, no rain, no evidence of any earlier storms. The skies were clear. I checked the neighboring houses; across the street they had power, but the houses whose backyards met ours were all dark. Of course, in the middle of the night you would expect that, but I know one of our neighbors always keeps his back porch light on all night and his house was dark.
I had a vague memory of adding an app for our electric company to my cell phone last summer, after the three day power outage (in 100 degree temperatures) that we suffered through. I checked my phone and sure enough, there it was. I clicked the app button and prayed it wouldn’t ask me to log in, because I had no idea what my log in info was. Luckily it went right through and I could see my account information. I tapped the Outage button and was informed that they had no record of an outage in my area, so I should check the circuit breakers. At this point I realized I was going to have to wake Dave up.
I have to confess that I hesitated, wondering if I should just go back to sleep and not bother him. In the past, I’ve woken up and realized the power was out and then just went back to sleep, figuring it would be back on by morning. After last summer, though, I have no faith in the power company anymore. I also had no idea how long the power had been out, and I was starting to worry about the food in our fridge.
I patted Dave on the shoulder and he flew straight up in bed. He was just as confused as I was when I first woke up, but he shook it off pretty quickly when I explained that the power was out and we were being advised to check the circuit breakers. He ran down to check, came back and shook his head. The circuit breakers were fine. I started to report the outage while he went outside to see if he could find any lights on nearby.
For some reason, I kept my CIs off the whole time we were doing this; I don’t know why it didn’t occur to me to put at least one of them on. I relied on Dave shining the flashlight under his face so I could read his lips.
After I sent all the information through the app, I got a notice saying that 25 customers in our area were without power and they were going to send out a crew. They estimated the power would be back on by 5:45 a.m. Dave was gathering candles (one of the benefits of making our own candles…we always have a bunch of them on hand!) and I started lighting them. Since we didn’t really trust the 5:45 timeline and we also didn’t know how long the power had already been out, Dave decided to bring up the generator from the garage.
This was the first power outage since we bought the generator. When the power was out last summer, you couldn’t put your hands on a generator for miles in every direction; they were either sold out completely or only had the very high end (and out of our price range) models. After everything got back to normal, the first thing we did was buy a generator. This was our chance to see if it was worth the money.
Dave hauled it up two flights of stairs and out onto our deck. We plugged in the refrigerator and one light, and let the fridge run for about 30 minutes. (The generator was loud so Dave didn’t want to leave it on for much longer than that.) Since it was already 4:45 at this point and he normally gets up at 5:00, Dave decided to stay awake; I crawled back into bed. When I woke up around 8:00, the first thing I noticed was that the power was still off. (Of course!) I checked my phone and there was a new estimate saying we’d have power back by 9 a.m.
What a difference this was compared to last summer! Well, last summer we also had to contend with the oppressive heat and humidity, but the main thing is that we had no generator. We knew by the afternoon of the first day that all the food in our fridge was ruined. This time, everything went like clockwork. Dave moved the generator under the deck, where we could hardly hear it. It kept the fridge going, as well as our modem, wireless router, laptop and computer. Even when they changed the status at 9 a.m. and said due to ‘severe conditions’ (?!) they now had no estimate for when the power would be restored, and they were requesting additional crews and equipment, I still didn’t worry. It was so nice not to be a nervous wreck, and to have access to more information because we had the computers. My cell phone is very, very limited in what it can do, so it was a relief to be able to pull up the outage map and see the more detailed explanations.
All in all, the power was off for about 7-1/2 hours that day. There was some kind of problem in the underground electrical cable that goes through our area; it affected just our street and the street behind us, and I have no idea what caused the issue. They had four or five huge trucks and they worked in the yards on either side of us (each of which has a transformer) until the afternoon. Even once the power came back on, they were still out there working for hours. At one point, the power went back off after it had been on for about three hours; I freaked out and Dave reassured me that it was probably temporary, while they switched over to the new cable. Sure enough, about five minutes later, everything whirred back to life again.
In the middle of all this, we were watching ominous weather reports. All the reporters were claiming we had perfect weather conditions for tornadoes and derechos (a derecho is what caused all the trouble last summer). I was really sure we’d get the power back on just long enough to have a huge storm come through and knock it back out again. The storm clouds gathered and we did get some storms, but nothing major. I think, though, that the universe was feeling a little feisty that day because when I checked email before heading to bed Wednesday night, I found a message from Paperback Swap telling me a book on my wish list had been accepted into the system.
And what was the book, you wonder?
Into the Storm: Violent Tornadoes, Killer Hurricanes, and Death-defying Adventures in Extreme Weather.
* Saturday started off with a visit from Paige at 10:15 a.m., ready to pick up her new (to her) car. She walked in beaming from ear to ear, just quivering with excitement. (Her dad was waiting out in his car, probably not as excited as she was.) I had gathered all the paperwork together – all the receipts for work done on the car over the years, plus the all-important title which we were signing over to her. She was taking possession of our 1994 Nissan Maxima.
Although it’s been nice to have a second car, especially when the Hyundai needs work done, it was starting to become a bit too expensive for us. Most of the time, the car just languished in the driveway; it’s a great, solid car and it seemed like a waste to have it sitting there. Paige is living in the suburbs with her dad and really needed a car to get around. And this seems to be our year to give the kids gifts of independence: We helped Eric out with the deposit on his apartment, enabling him to move out on his own; now we’ve given Paige a car, enabling her to get to and from work and wherever else she needs to be without being at the mercy of someone else.
We filled out the paperwork and she left with her dad to get the title transferred and get plates for the Nissan. I expected her to come back with one of those yellow temporary plates that they give you (and then you go back in two weeks or so to pick up the actual plates). Instead, she came back about 20 minutes later with actual license plates! They got the plates on the car and we watched as she backed out of the driveway and drove off in her first vehicle. What a weird feeling! It feels good knowing the Nissan is in good hands and is getting used; hopefully Paige can get a good few years out of it before she upgrades to something newer. (Ironically, the Nissan has less miles than the Hyundai, even though it’s 10 years older…whoever had the Hyundai before us must have driven a LOT for work or something.)
** Not long after Paige drove off (DROVE OFF, aagh! So weird!) we left to pick up Eric from the train station. He came out to celebrate his birthday, a bit belatedly. We were waiting in the parking lot, looking for him, and then there he was: unmistakable, loping along, all long arms and legs, in his crazy boots and custom clothes and little topknot ponytail. We came back to the house and proceeded to have a really nice day – a trip to Goodwill (he got a couple of things but admitted that the thrift stores in Chicago have a better selection…I can imagine!), chatting with my mom for an hour or so, a trip to Half Price Books, then dinner (Marlboro Man sandwiches and toasted cheese grits), cake and TV. He hadn’t seen the new Arrested Development shows yet; the whole family watched the original series years ago and loved it. So we watched the first of the new episodes with him; Dave likes the show but said he got a bigger kick out of watching me and Eric giggle at everything. We finished off with the first episode of Orphan Black, our shameless way of trying to get him hooked on it. Dave and I already watched the first season and absolutely loved it; it was one of those shows that got better and better with every episode. And I don’t mean it started off crappy and then got better; I mean, it was amazing from the beginning, and somehow managed to top that with every episode thereafter.
He is just so happy, having so much fun at his job and with his roommates and with living downtown in general. As a parent, and especially knowing all the rough years he went through to get to this point, I can’t even express how good it makes me feel to see him finally get to this point in his life. Every stage of his life throughout the years has been a learning experience for me, since he’s my oldest. It’s strange to know he’s fully an adult, supporting himself and living on his own and making adult decisions. And his age. 23! I actually thought he was turning 24 this year at first, and I had to stop and count because that just didn’t seem right. And let’s not even talk about the candles for his cake; we didn’t have a number 2 and 3 in the bag of birthday candles I’ve been saving over the years, so I had to use regular candles. I wasn’t sure I had enough for his cake…I had to count to make sure there were 23 in the bag. What happened to the days of just five or six candles?!
*** While I was getting dressed on Saturday, I looked in the mirror and thought I looked pretty good. I was wearing jean capri pants and a black polo shirt; nothing fancy, but not too slouchy either. We took some pictures with Paige when she came back with the license plates and registration papers, and when I saw the picture of the two of us I was horrified at how bad I looked. This happens all the time when I see pictures of myself. I look in the mirror, think I look pretty damn good, get a photo taken, and BAM…I look horrific. It’s like the opposite of the way I was when I was younger; back then, I looked in the mirror and thought I looked fat and horrible…when in reality (and in photos), I looked just fine (even a bit too skinny, to be honest).
It’s starting to totally make me doubt myself and wonder what I really look like. Am I the horror show that I look like in pictures, or the chubby-but-not-sloppy person I see in the mirror? One thing I tend to do is wear my shirts a little bigger; I hate having material cling to me, and I don’t want to sit down and have my shirt pulled tight across my body. It’s partly because I think it looks nasty to see all my curves and my belly being accentuated by tight fabric, and partly because, even when I was thin years ago, if I wore a form-fitted shirt, people would pat my tummy and ask if I was pregnant. I mean, I weighed about 115 pounds at that point…I didn’t HAVE a tummy to pat. But apparently the fitted shirt accentuated every little thing, even my damn flat stomach that I wish I still had. So now I make sure my shirts skim over my body and don’t hug, and I don’t wear that thin, spandex-y material that so many manufacturers like to use for shirts. I know this makes me look bigger, but I just feel more comfortable that way. If I wear a fitted shirt, I feel like everyone is looking at me and thinking, “Damn, she needs to buy clothes that fit instead of clothes that are two sizes too small.”
**** So in the midst of my self-loathing, I reasoned that if I could just somehow manage to lose some weight, or even tone up and lose some of the flab, I would feel better about myself. Dave has been complaining about the weight he’s gained, since he has to eat every time he takes his Hep C meds. Why not see if he wanted to do some kind of fitness program with me? Out of curiosity, I asked him if he would be willing to do this fitness DVD with me, 30 Day Shred (with Jillian Michaels). I’ve done it before, here and there, but never every day for 30 days. It gets rave reviews from people who stick with it and really do it for 30 days. I know it’s hard as hell for me, since I’m absolutely a beginner…with bad knees and no stamina. But it’s only 20 minutes long, and if Dave was doing it with me it would keep me honest and I wouldn’t skip days or stop doing it.
To his great credit, he didn’t even hesitate – he agreed instantly. (How awesome is my husband?!) So we brought two yoga mats downstairs, as well as hand weights, and got started this morning. We did the warm up. Then we started doing jumping jacks. We got to the squats with the weights. Lots of those. Then we started mimicking a jump rope move. Push ups. Jumping jacks. Squats and weights again…and out of the corner of my eye, I saw Dave stop. He bent over and put his hands on his knees, gasping and coughing. (I could barely hear him over my own gasping.) I asked if he wanted to stop and he nodded, wordlessly.
As we trudged upstairs, I asked if he thought we should start with just walking around the block and then go back to the DVD after a week or so. “Nah,” he said, “We’ll do it again tomorrow and see how far we get that time. It’ll get easier.” And that’s exactly what I needed to hear.
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!)