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!