Can't Seem to Catch a Break

So, my left shoulder has been bugging me for the last month or so.  It felt like a pinched nerve or tense muscles, something I'd felt before, so I was going to wait it out but it just didn't go away.  After talking with my oncologist about it, she wasn't too concerned- she gave me a referral to physical therapy and an MRI just to be sure.  Well, I had the MRI yesterday and today my medical oncologist (my main doc) called.  There is cancer in the lining of my spinal cord.  My medical oncologist is surprised and disappointed.  I am too, I really didn't think this MRI was going to show anything but a pinched nerve, urgh.

My medical oncologist has a call into my radiation oncologist.  She wants to know if it's feasible to do some radiation to relieve the pain.  If so, I'd get radiated and then I would start a trial of a chemo designed to target central nervous system metastases.  I should hear back from my medical oncologist tomorrow or early next week.  As usual, I'm anxious to finalize "the plan".   Until I know what comes next I need to remember I'm still feeling good.  In fact I got the call while taking good old Red for a trot.

Hearing-

-Aid is in and it works (and it isn't super uncomfortable).  Went down to San Mateo with Keith to get my hearing aid.  I fucked up and thought the appointment was at 2:30, when in fact it was at 1:30 (really, it's miraculous that this doesn't happen more given how many appointments I have).  Thankfully the doctor was willing to fit me in at the end of her day (4:30).  Keith and I took a little stroll around the neighborhood and enjoyed the fine spring day.

The hearing aids are tiny, really pretty hard to see if you aren't looking for them (pictures coming).  It's going to take me a while to get used to them.  It doesn't make it so I hear out of my bad ear, it just "broadcasts" the sounds from my left ear to my right ear.  It sounds a little tinny, but I think I'll take it!  I'll go back to see the Audiologist in two weeks to make the necessary adjustments.

Home Again, Home Again, Jiggity Jog

Keith and I are back from a quick trip back east to see my family. While I've seen my mom and sister recently, it'd been entirely too long since I'd seen my niece and nephew. It was great to see everyone! Keith did his son-in-law duty and fixed a couple things around the house.  I had fun putting together a giant bubble blowing contraption (so fun, I might have to make one for myself).

We got back Tuesday night.  I took it easy yesterday and today I had an echocardiogram (to make sure my treatment isn't damaging my heart muscle- it isn't, I still have an ejection fraction of 61%) and my Herceptin drip.  Things went smoothly and I hustled home on the BART.  Keith picked me up at the station and we had lunch together.  It was a good day.

12:21

Got an email from my medical oncologist at 12:21 saying that everything is shrinking (nothing new showing up and nothing getting larger). I love that she lets me know so quickly! My MRI was yesterday at 5pm, so I expected that I might have to wait all weekend. Whew! What ever little headaches I'm having are not from cancer growing in my head. What a fucking relief this is. Lets hope things keep shrinking!!

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.