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Talking to Strangers

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!

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Three Weeks Down

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

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

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

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

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

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

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

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

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

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

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

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

And the (Medical) Hits Just Keep on Coming!

Remember how I said Dave had the same abdominal pain that I did earlier this week?  And I thought maybe we had something viral?  Well, it turns out Dave’s pain was an entirely different animal!

He woke up feeling fine on Saturday morning and went over to my mom’s to continue painting – when I woke up, I just found a happy note from him (“Good morning, sunshine!”) letting me know where he was and that he’d be back by 10 am.

He came back and I could tell something was wrong, but I couldn’t tell if it was maybe some catastrophe that happened at my mom’s, or if he was having some side effects from the Hep C treatment or what.  He told me that the pain had come back, and he thought it was some terrible gas attack.  He stretched out on the floor and said that lying flat made it feel a lot better, so we assumed he was dealing with my Weird Stomach Troubles.

As the afternoon progressed, he said he was pretty sure it was something else – he could feel really bad pain when he urinated, and it was more in the back on his left side (my pain was more in front, like the pelvic area, and not the back).  We checked the possible side effects from his Hep C treatment, but nothing was mentioned about pain like this…nausea and loss of appetite, yes, but not severe pain.

Of course we got online and started researching, and then kidney stones seemed like a real possibility.  After he read some horror stories about guys having instruments inserted into their ‘delicate personal area’ to extract the stone, he decided he would ride it out at home until he passed it on his own.  So he started guzzling water and riding out the pain, assuring me that he could handle it and there was no way that he needed to go to the ER.  Since he’s as stubborn as me, I didn’t push him on it…I just told him to let me know if he changed his mind.

Around 7:30, we were watching TV and I could tell he wasn’t even paying attention to the show; he was closing his eyes and grimacing in pain.  I asked again if he wanted to go to the ER; first he said that maybe he’d go in the morning, if it wasn’t better.  About 10 minutes later, he finally decided he’d rather go NOW, thank you very much.  So we headed out around 7:45, after making sure we had his Hep C information.  I briefly thought about bringing his morning meds in case he was admitted, but I decided against it.  I also confirmed I had backup CI batteries in my purse, since they usually run down in the late evening.

We got to the VA hospital (about a 30 minute drive since there wasn’t much traffic) and the waiting room was empty.  Dave walked up to check in and the lady at the desk said, “Oh my, you look like you’re in a LOT of pain.”  That was putting it mildly!  By this time he was walking like an old man, hunched over and shuffling.  The intake nurse called him back pretty quickly; I made sure to go with since he was having trouble hearing and really kind of out of it from the pain.  His blood pressure was 150/90, which is by far the highest I’ve ever seen it – Dave always has perfect (enviable) blood pressure.   I noticed that the nurse repeated everything back to him when he was finished, to confirm his symptoms, and I was impressed – I had never seen them do that before.  I assumed it was because he was hard of hearing.  I did notice that the VA seems to deal with hearing impairment better than other hospitals I’ve been in, possibly because they see it more with veterans than with the general population.

We went back out to wait for about five minutes before being called back to a room.  Then we sat, and sat, and sat some more.  A nurse came in and collected Dave’s urine sample and said the doctor would be in soon.  I would say it was close to 9:30 or 9:45 before he came in.  I was starting to get a little pissed; I mean, Dave was in so much pain and it felt like we were being ignored even though the ER seemed to be pretty empty.

Finally though, things started moving along and we ended up being really pleased with how the whole visit was handled.  He was seen by the doctor, then the nurse came back to draw blood and right after that they took him for a CT scan.  I expected that to take forever; I remember checking my watch and it was 10:08, so I figured he might be back around 11:30.  He came wheeling back in at 10:22!  Then we waited again, for a long time.  After about 30 or 45 minutes, the nurse came back and gave Dave some morphine.  FINALLY.  At that point, he was so much better – it really took away his pain and made him more lucid.

We were chatting away and boom, my right CI battery died.  I grabbed my purse, slipped on a replacement battery and…nothing.  The battery was dead.  So I put the other replacement battery on, and same thing – dead.  I couldn’t believe it!  It’s been a long time since I used the batteries in my purse and I never dreamed they would just go dead without using them, but I guess that’s what happened.  So there I was with only one functional ‘ear’ at about 11:15.  I checked my left CI and I saw two flashes when I slipped the battery on and off.  Four flashes means the battery is fully charged, so this one was at least halfway gone, possibly more.  I decided to just take it off and go au naturel, since I can understand Dave fine when I can’t hear.  I wanted to save my hearing for when the doctor came to talk to us, and also in case I had to drive home alone (if Dave was admitted) so that I could hear the GPS.

This was another loooong period of waiting, while they waited for someone to read the CT scan.  Since Dave was able to talk and no longer in horrible pain, we spent a lot of time chatting and practicing sign language.  He was teaching me – I still need lots of practice!  At one point they came in and took him for an X-ray; that went just as quickly as the CT scan.  Finally, the doctor came back and confirmed that Dave had a 2mm kidney stone.  They were giving him three medications (pain meds, antibiotic and Flomax to help his muscles relax) as well as a strainer so he can (hopefully) catch the stone.  They told him to call Urology on Monday and tell them he needs an appointment.  He is really, really hoping he will pass the stone on his own before the appointment!!

It was pretty funny – the doctor was talking to him about using the strainer when he urinated and Dave said, “Oh no, I don’t strain when I pee.”  And I could see this look of amusement pass over the doctor’s face – he was standing on Dave’s deaf side (as was everyone that walked into the room, since they entered on his left, which is deaf) and he finally realized Dave was misunderstanding him.  But I thought it was a pretty easy thing to misunderstand – we cracked up over that later on!

The doctor left and Dave went off to go the bathroom (his seventh time since we entered the ER).  The original nurse had left for the evening, and the intake nurse had taken over for her.  While Dave was gone, she came in the room, kind of excited, and asked if we knew sign language.  I showed her the CI I was holding, told her I was deaf and my batteries were dying so I was preserving them, and put the CI on to talk to her.  She pulled her hair back and said, “I have CIs too!  Two of them!”  It was so awesome!  I realized that was probably the reason she repeated everything back to us during intake – to make sure she heard it correctly.  She knew sign language well, and explained that she had seen us signing earlier.  I told her that Dave was teaching me, since I just lost all of my hearing five years ago and didn’t know many signs.  Then I told her that we actually met online through a hearing loss support group, the SayWhat Club.  Her eyes lit up and she said she’d been looking for something like that; she had been a member of ALDA many years back.  We were having a great time, talking about SHHH and ALDA, and I recommended SWC, HLAA and the Illinois Cochlear Implant Chapter to her.  Dave came back and joined in the conversation; it was just a really nice surprise and an upbeat way to end the evening.

We went off to wait at the pharmacy for his medications, and finally headed back home a little after 1 am.  We got home between 1 and 1:45, fed our outdoor kitty (Goldie) who was waiting impatiently on the deck for her midnight snack, and collapsed into bed a little after 2 am.  We’re usually in bed by 11 pm so it was weird to be up that late and not even tired!

Dave is making pie crust while I type, and his pain meds are doing the job.  Hopefully this medical crisis will resolve itself quickly for him and we can get back to focusing on one medical treatment at a time!

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