Sorry I can't hear you... yet!

Had an appointment to discuss hearing aids today.  By luck or good planning my audiologist has single sided hearing loss (like me) and has tried the new fangled hearing aid that was recommended by the folks at UCSF.  She liked it, but at the moment anyway she wears a different type of hearing aid.  After talking to her about the different options, I've decided to try the type of device she uses.  It's called a CROS device (contralateral routing of signals).  Basically there will be a receiver in my deaf ear that will transmit sound to a device in my good ear.  The benefit of this option is that I get a 60 day trial period; if I hate it, I can return it for a refund.  The other benefit is that it will be completely covered by insurance.

The other option is called a SoundBite.  It consists of a receiver in the deaf ear that will transmit sound to a device that fits around your back teeth.  The sound is then carried in the bones of your skull and is detected by the good ear.  The downsides of this option is that is so new it may or may not be covered by insurance, the cost of this option is about $8000, the battery only holds a charge for 5-6 hrs and it takes a lot longer to get one.

My decision seemed pretty easy- I'll try out the CROS, see if I like it.  If I hate it, I can return it and maybe then I'll try the SoundBite.  I'm just excited to be making some progress.  Next Thursday I have an appointment to get fitted for my hearing aid.  Here's hoping it works!

Next up... my scan on Thursday.  I'm really hoping I'll get the results on Friday, but that might be pushing it.

And We're Back...

Keith and I are back from a quick trip to the U.P. to see his family.  I was a little nervous about travelling so far given all that is going on with me, but it went fine.  Getting out of the city and visiting with family was just what we needed.  We rented the same cabin we rented at Christmas time.  It's a comfortable place tucked in the woods.  We both really appreciated getting out of our own heads for a while.

It was great to see everyone and I'm happy to report that Keith's mom is doing a lot better.  She has more energy and strength.  Almost a year after all this started, she isn't back to her old self, but she is making progress!

I'm feeling ok, my headaches aren't any worse.  All the sitting around I've been doing lately has made me stiff and sore.  (I'm not confident enough to do really long walks given my Tykerb gut - sorry if that's TMI).  I think I'll be able to figure out a routine now that I've been on Tykerb for a couple weeks.

Just another tidbit about my lame radiation oncologist- skip ahead if you're bored with this storyline:  I expected a call to schedule the brain MRI while we were away, but no...So on Wednesday morning I called my radiation oncologist and left a message.  I hadn't heard back by the end of the day, so I emailed her directly.  On Thursday she emailed me saying that her staff were having trouble getting me in.  The only appointment they could get was at the end of May and she was hoping to figure out how to get me in earlier.  Seemed weird to me, but ok.  I thought I'd wait and see.  Fast forward a couple hours...

I had an appointment with my medical oncologist yesterday and for the first time I saw her nurse practitioner instead.  Since I didn't have anything big to discuss it was fine and actually she gave us a lot of good advice.  She also took charge of scheduling my brain MRI after I mentioned it.  She ordered the MRI and on my way out I sat down with the scheduler.  It took a fax and a phone call, but I'm now scheduled for my MRI next Thursday afternoon.  It amazes me how efficiently some offices work while others are just a clusterfuck. I'm finally learning that I should just avoid dealing with the radiation oncology folks unless necessary.  After seeing the nurse practitioner and the lovely scheduler we went upstairs for my Herceptin drip.  That went smoothly- my new port works GREAT.  I love it!

To top the day off we headed over to the Off the Grid on Stanyon.  For those of you not in the know; Off the Grid is a gathering of some of the local food trucks.  Keith is sick for the Chairman Bao truck and yesterday I tried a bahn mi and some sweet potato tater tots from the Little Green Cyclo truck.  Keith's food was great as usual, the tater tots were really yummy and my sandwich was just ok.  It was a gorgeous and sunny early evening.  We loved topping off our afternoon of medical appointments with something treatful before we headed back into traffic to get home.  (Keith is getting pretty smarty-pants about lane choices prior to the bay bridge.  I don't know if it actually helps much, but at least we seem to keep moving forward...slowly...)

Animal update:
Diesel is fine.  She was back to her spunky self right away.  It was clear when I rescued her that Red had had his mouth on her (she had saliva on both sides of her rib cage), but he must have just mouthed her (thank goodness!).  I can't believe we have a dog that won't leave our cats alone!  When we adopted him they told us he would be fine with cats with a little work.  Well, we've tried.  If one of us is around we can keep it under control, but when left to his own devices, instinct takes over.  Ugh!

Crazy!

So I had an appointment with my radiation oncologist on Monday. I told her I still have some fleeting pain in my head; not really headaches, but pain nonetheless. I thought she'd say "...it's probably just tumors shrinking.." yada yada. Instead she was concerned enough to order my followup MRI. Last time we talked she said she'd order the MRI 8 weeks after radiation ended. Now it'll be more like 6 weeks by the time it gets scheduled. Not a huge difference, but it gets my mind in that fearful scan mode. yuck.

As if in an effort to get my mind off things, the animals decided to create some major drama yesterday! I was in a cleaning frenzy, and in my frenzy I left the pet gate open and Diesel got outside (our cats are both indoor cats, Hayward is happy that way, Diesel always wants to explore). The problem here is that Red was outside! (We keep the cats and Red separated at all times because Red, essentially, wants to eat cats....despite the shelter telling us that he'd be ok with cats.). I heard a ruckus and hustled out to the yard to find Diesel cornered and cowering and Red barking going after her. I got them separated, screeched at Red and brought him inside. Then I went back and got Diesel. She seemed fine, but there was definitely saliva on her from the dog. I looked her over pretty carefully- nothing was bleeding or sensitive, but I decided to take her to the vet just to be safe. I took her in, and the vet thought her lungs sounded funky and wanted to keep Diesel so they could do x-rays and keep an eye on her. So, I left her there and went home and waited by the phone for news. Later in the afternoon I talked to the vet and found out that Diesel seemed fine. Her lungs were sounding normal and we could go get her at closing time. The only hitch was that Diesel was a "hard stick" (just like me!) so they wanted to leave her catheter in overnight, just in case. How bad can that be right? Ugh.

We picked her up, brought her home and she immediately went after the bandage over the catheter. We turned around, headed back to the vet (thankfully they don't close on time) and got Diesel a cone. Case closed, right? Oh no.... Diesel spent the entire night banging the cone around. She never got comfortable (and neither did we). Fast forward to this morning; we went back to the vet for a quick check, everything looked fine and the catheter is out (and more importantly the cone is off!). Geez! If that doesn't make my head hurt I don't know what will.

Plan B

My Herceptin side effects have subsided and I've started taking Tykerb. At this dose, Tykerb is easier to deal with. It makes me feel a little oogley and unsettled. It is hard to figure out what I want to eat, but gone are the days when all I wanted was spicy burmese.

The big news this week is that I got an appointment with a different audiologist (that can get me the specific type of hearing aide that was recommended)! Yeah! The appointment isn't until the end of the month, but that is still 2 months before I could get into UCSF. It'll be nice to make some progress before July!!!

Other than that I've had a nice lazy week. I did a little bit of school work, read a book and relaxed. My moon face is slowly improving, yipppee!

I thought I'd snap a picture of part of a note I got last week. It is from a former student who I loved, but drove me a little nuts (you'll see why)...

So I Finally Saw the ENT and...

She told me that I'm deaf in my left ear. The good news is that despite feeling funny my right ear is fine. The other good news is that I should be able to get a hearing aid (of sorts) to help me. At the end of the appointment with the ENT, she gave me a referral to get fitted for a hearing aid. I headed over to make an appointment (all excited to get something to help)...and the first appointment they have is at the end of June (and that is just the introductory one, I wouldn't get the hearing aid for another two weeks). I told the receptionist I might cry, I was so disappointment it would take so long. I managed to hold it together, but holy shit! That is 3 months away. One of my goals for next week is to call around and see if there are other options that can get me in earlier. The only thing that makes is a little tricky is that the ENT was recommending a new fangled hearing aid for the type of hearing loss I have. This hearing aid isn't something everyone has because it was FDA approved only recently.

What else happened last week? I had the pleasure of hanging out with my sister. We ate our way around the East Bay, relaxed, walked the dog, did a little shopping and went to the city for appointments. I saw my oncologist on Tuesday - no big news there. She wrote me the prescription for Tykerb (I don't have it yet because you can't just pick that kind of drug up at the drug store, but I'll have it next week) and got me scheduled for Herceptin. Wednesday was the ENT debacle. Thursday, I had my Herceptin drip. The drip went smoothly. I have never had any significant side effects from Herceptin, until now. For now I'm blaming it on the fact that this was a loading dose and I think I was dehydrated. I had trouble sleeping Thursday night and when I got up I was sore all over. On Friday, Meg and I caught up with some of my Science Department colleagues for a drink and some macaroni and cheese. They delivered the sweetest quilt (pictured), more cards and a luxurious gift from a group of parents.

What comes next? I will start up the Tykerb at 1/3 the dose of the trial (so I'm hoping it'll feel easy, we'll see). More relaxing. Calling around to find a place that can get me in so I might be able to hear things happening on my left, before July.