Friday, February 18, 2011

It's Always An Adventure

Here I Go Again

After getting the disappointing MRI results, I made the rounds of all the relevant doctors (such an awesome team, truly). The radiologist who has been reading my brain MRIs all along is very good, and her opinion is that the enhancement showing *is* active metastasis. The oncologists aren't so sure, but do agree that *if* the enhancement is active metastasis, what we are currently doing is not going to be enough to treat it (in the parenchymal tissues as well as the LM).

So we decided the more prudent thing to do is treat me with the whole brain and spinal radiation that I turned down last July/August (after MRI showed no more active mets in the brain). It's been a flurry of activity as I see all the doctors and get started with the oncological radiation department.
I had to be measured and marked and tattooed and pinned facedown with another one of those masks (like Cyberknife used) as we lined me up in a CT and then with the actual radiation equipment. I'll skip over describing for you how torturous some of those appointments became for me!

And then I got the call. Even with our awesome insurance covering much of my costs, I will still need to pay hundreds of dollars each week for my treatment!!! Coming at a time when we are broke, are owed money by others, and got hit with a $860 electric bill followed by a $1500 one; all I can do is trust that God will continue to take care of me financially as well as physically.
Clearly, now is NOT the time to make all those trips to Seattle.

Somewhere in the middle of all this activity and stress, DH managed to take a day off from work to spend Valentine's Day with me. Given our bills, we settled for the cheap date that I often am -- and simply took my new dog and went hiking at our local Punchbowl.

Click on any picture to see the larger photograph.

I love that Punchbowl vista!

My girl is coming along so well now that she lies down in the car and rides like a pro. She already walks so well on a leash that she virtually NEVER starts dragging me. And boy, does she LOVE hiking with us! She is so well-behaved when she hikes with us, more mature than I would ever expect a 4-mo-old puppy to be. We love her and are already SO attached!

This was her longest hike to date; we walked at least 1 mi out on the Burkhart Trail, making it from manzanitas to mountain pines before we turned back. I love this walk because it feels a bit like Hansel and Gretel; the manzanita starts off as the bushes to which we are accustomed but quickly becomes large, old, twisted TREES tangling the terrain.

We walked all the way to the first big hairpin in the trail after the junction with the Devil's Chair trail, admiring the transition from high-desert to mountainous plantlife. There was a nice flat spot above the trail at the base of a twin tree; that's where we popped open our picnic and enjoyed the spot. DH smoked roast beast and fresh fish and brought that along with dried fruit and nuts for us to eat. It was delish! Only problem was, we forgot to pack the dog's lunch! So we broke a cardinal rule, and shared ours with her. We did work on enforcing that she couldn't just help herself!

"I can see my house from up here!"

The way we came.

Picnic spot at base of twin tree.

Save more of the trail for another day!

Picnicking on the mountainside.

I felt SO GOOD and the day was so beautiful, blue skies and sunshine and just cool enough that I never had to peel my sweater. The chemo rash stayed Grade 1, and I simply stepped into shade anytime the sunshine started triggering the itching.

First glimpse of Mt. Williamson on the return.

First glimpse of home on the return.

It was so beautiful and I felt so good, that I attempted a little experiment. I ran (about a jogging pace) approximately 150 ft! My feet, although numb, kicked into muscle memory mode after the first few steps, and I was really able to do it! And then I stopped, because the jarring on my spine (and those spinal nerve roots) was OBVIOUS.

A Punchbowl canyon.

But I also wondered if there were any neurological symptoms showing yet, so I tested myself by skipping. Yes, skipping. Like most of us haven't done in over 40 years. And not only did I immediately remember HOW, I could also DO it. So I think I'm doing great, and I do wonder if it is NOT mets that is showing in the brain MRI.

I told her to walk herself while I took a picture, so she did!

We arrived back at the parking lot just as the sun was sinking behind the mountains, just as we had planned. Total trail time was 2.5 hr. All in all, a very nice Valentines day!


Saturday, February 5, 2011

Speed Bump

Saturday, February 5, 2011

The Long and Winding Road

It's February, and I thought for sure I'd be making my travel plans for Seattle by now. Unfortunately, I hit a speed bump along the way.

I had all my ducks in a row to get into the Seattle clinical trial, and only needed to get an updated MRI to show there are no active spots in the brain. So I went in, excited to finally be at the last step on the admissions checklist. Hakuna Matata, ya know? ROUTINE.

Imagine my surprise when the doctor got the results and it showed what the radiologist believes is active metastasis in a couple (new) locations! Surprise was not the emotion I showed, however. I felt like I'd been kicked.

Well, you know how much I hate bullies, and cancer is just one big bully that I am DONE messing around with; so I have decided to call in the BIG GUNS! I turned down WBR (whole brain radiation) and spinal radiation last August because the spots were all significantly decreased in size or GONE, and there were no active spots in the brain. It just wasn't time for that bullet yet!
Well, now it is.

The MRI shows a new growth in the IAC, as well as a spot growing into the outer tissue of the cerebellum and the spinal nerves at C1. I need to get the remaining spots out of the spinal nerve roots as well as these new spots showing in the cerebellum/IAC areas of the brain, and then I will have to wait a few months to get more imaging.

So now I'm thinking Spring probably IS the best time to visit Seattle the most often, since I have to make so many visits (especially in the beginning) once I'm accepted into the trial. So, onward and forward -- at least we have a plan.
We've increased my meds back to the level it was at before the PPE (Hand-Foot Syndrome) and other side-effects got so miserable for me. We're also going to increase the intrathecal dose in Mr. Puffy. And in a couple of weeks, I'll start radiation therapy every single day, five days a week, for approximately four or five weeks.

The stereotatic radiosurgery (like Cyberknife and Gamma knife) is not going to be appropriate this time, because once again the leptomeningeal metastasis is seeding in like icing ("zuckerguss") -- and thankfully, so far it is VERY SMALL. So this time seems to be the appropriate time to use that lone field-radiation bullet!

I'm disappointed in the delay, of course; but I've learned to be a patient patient. I still believe I will walk the path all the way to cure. Meanwhile, DH notices I have a little more trouble walking again.
I'm fatigued enough that I had to pass on hiking with DLB while he was here to visit, but itching enough to get out there that I can't resist doing "recon."

Today I took a little drive in Big Blue with my posse; the Brown Dirt Cowboy came along in case of trouble. We headed out a truck trail, doing recon for a ridge I want to climb.
I found the best place for us to intersect into the trail (the actual trailhead is closed due to arroyo toad habitat), but BDC called me back the instant he saw me start climbing. I'd seen enough; I knew we were in the right place. I'll be back with walking poles and boots! Meanwhile, it made a great little outing for the posse and a nice little drive for us. But oh, am I itching to get out on the trails again!

As usual, click on any photograph to see the larger version.

"Hurry up!"

I'm nearly positive the intersection with the trail is right at the top of this little crest, but the Brown Dirt Cowboy made me turn around!

It was a nice little workout grade, I have to admit!

The view (looking back the way I've come) from where the BDC made me turn around...