Girl on the Loose

Pat yourself on the back

Published on March 12, 2010 in cancer. 1 Comment

My team at DF is always trying to convince me to ‘talk’ with a mental health professional. They think I’m on the verge of something.

I always shrug them off. The only mental health pro at DF I have met talked to me like I had one foot in grave, and kept repeating how amazed she was at my bubbly attitude. All I can think is that she must see mostly end-stage cancer patients.

(Which reminds me, get some blowing bubble mix…)

Last night I was chatting with Jenn, talking about how she sees the blog in blue (and if you see the blog in blue, you too have some sort of issue because the blog is WHITE), and for some reason I mentioned that DF keeps telling me I need mental health, that they want me to “talk” with someone. I always argue that I’ve been doing this cancer thing for three years, I think I have it under control.

Jenn points out, “You do talk to people. You blog!”

I giggle.

I do share just about everything I’m going through, and even try to convey my funny humor in the process. If you don’t think I’m funny, imagine me reading the blog out loud in the voice of Miss Piggy or while sucking on some helium.

So now that I’ve declared all the readers of this blog my “Mental Health Team” (I’ll work on t-shirt and name tag designs later…), give yourself a pat on the back. There is no pay raise coming, so you’ll have to be happy with a self-pat. If you happen to see me, you can ask for your pat in person.

References will be provided upon request.

A cold ride to a warm yummy

Published on March 11, 2010 in Food. 1 Comment

First, I shut the snow off. It can’t be snowing during scooter season.

Because I didn’t have to go to Beanville for Herceptin Wednesday (OMG, YEAH!!!), I rode Scoot to my afternoon project. It required the proper attire, don’t get me wrong, but it is oh so worth it.

PBJ had the day off, and had been cleaning the Box Car before I left the house at lunch time. I asked about dinner and he said he’d think about it.

Towards the end of my day at afternoon project, PBJ texted to ask about dinner. He picked Kosta’s Pizza in East Falmouth. It’s next to the chinese place I don’t recommend.

Since I was on the Scoot, and PBJ was on his CBR riding in from parts off-cape, we met in the parking lot. It takes a few minutes to un-gear enough to even say hello.

We walked in and the family running the shop greeted us warmly, saying how jealous they were of our motorbikes. The woman even said she too would be on a scooter.

We ordered a half Hawaiian, half meat large pizza. PBJ also picked out an order of garlic bread.

Kosta’s is small, and super family friendly. The kids were doing homework, Spongebob was on the TV, and the day’s copy of the newspaper was on the counter. There are only a few small tables, but I found it cozy.

The menu had standard pizza fare, sandwiches, and fry-o-later regulars. Canned and fountain soda was also available.

The dad brought out the garlic bread when it was ready. I found it super buttery. I wish I could make garlic bread like that, but I’m too timid with the butter.

The mom was in charge of cooking and the dad kept helping the kids with homework. I scanned through a copy of In Touch (the stupid version of People) with PBJ reading the newspaper. People trickled in for take-out, but it was never busy or hectic. I didn’t get stressed by a crowd of people.

The pizza came out and I fell in love. The crust is sort of like a thick flaky pastry crust. The sauce wasn’t over powering, but plentiful to keep the moisture level even. My Hawaiian toppings were thick and plentiful. I didn’t feel like anyone was skimping or counting pineapple pieces. PBJ also liked his toppings.

If I had a star rating system (which I don’t), I would give it 3 1/2 out of 4 stars.

A smidge on the high price side according to PBJ
Homey, family friendly
Convenient location (just watch the parking lot after dark)
Yummy food!!! Not timid on the toppings

Neither one of us could finish all our pizza. I brought home two slices, PBJ brought home one. The ride home was on the chilly side since the sun had gone down and the temps were dropping.

I light up my life

Published on March 10, 2010 in cancer. 0 Comments

I’m in the Lightbright study!! (insert me dancing here)

I got the call pretty early this morning (like 9am ish) that the Dermatologist, Dr R, had checked with a bunch of cancer doctors at Tufts to make sure I was a safe candidate. Everyone gave the thumbs up, so I set about releasing my medical records from DF to Tufts.

I then wrote a long email to the entire team at DF. I have 2 oncologists, 1 nurse practitioner, and 3 research nurses. I know, crazy.

Within 30 minutes of sending the email, Dr T, the newest oncologist, called in a mild panic. Since people usually don’t call me, I was confused. She was worried that the Lightbright study would interfere with the HKI study, which I’m not even in yet. We talked about wash out times, and as I knew, they were perfectly timed. Perfect, especially since I don’t have a slot in the HKI study yet.

Dr T said I can’t do the lightbright and the HKI at the same time. I don’t think it’s an issue since lightbright can only be done every 90 days. I’ll do lightbright, have a washout before HKI (if they even get a slot), and will know by the time the West Virginia break in June if HKI is working.

Working or not, I’m going to West Virginia. When I get back from WV, I can sneak in another lightbright before slotting into another DF trial.

Writing out my work schedule has been a challenge. Promising to walk around with my pink umbrella, even indoors, has made everyone giggle, and a few people request pictures.

Fighting the sniffles

Published on March 9, 2010 in Health and cancer. 2 Comments

I’ve been fighting a cold, and I’m not winning. Thanks to everyone who have shared your germs over the last week. I’ve sucked up some hot sauce in a bid to ease the pressure building in my nose. You should all run out and buy stock in the tissue companies. I prefer Puffs.

To update you all: Tentatively, I’m going to do the PDT study (aka the Lightbright Study as co-project person Sara calls it). The nurse got my pics via email today and said it appears workable. And if you had seen the pics, you’d probably be surprised.

Anywho…

There is a lot of scheduling issues to work out. Lightbright has to start before the HKI-272/Torisel study DF thinks I’ll start in 4 weeks. And I have a little pain study next week that is investigating post mastectomy pain. The HKI start-up shouldn’t be an issue because technically Lightbright isn’t surgery or chemo. Gotta work the angles.

The odds of me keeping this all straight? Not good.

Anywho²…

Lightbright study requires me to stay at the Tufts research center for at least 24 hours. If I take a bathroom break, that time is tacked on to the end of the light exposure time. The research nurse recommended bringing company for entertainment purposes. I’ve thought about it, and I don’t think that’s a good idea for me. Except for emergency snack runs, I should be able to self entertain. I’ll bring Fuji Apple, a bag of snacks, movies, books, and all my USB chargers. Oh, and I have a choice of BBC or a bed. I guess I’ll have to bring my inflatable neck pillow.

I’ve also had 2 big coffees today in case you couldn’t tell I’m more off my rocker then normal. Which reminds me I need to recharge my card…

(That goofy HKI study needs a cute name for the blog. Any suggestions?)

New Name in the Game

Published on March 8, 2010 in cancer. 0 Comments

I got a call today from Tufts.

They have a trial (not funded by a drug company) looking at treating breast cancer skin mets with Photo Dynamic Therapy. They emailed me all the info, and I have to email pictures tomorrow so they can see how bad I am.

There are some upsides:

~Once on the trial, I can go back on chemo (the PDT requires a 30 pre-treatment washout)

~Treatment can be repeated over and over, every 90 days (they only treat a 10cm squared area each time)

~No slots or wait lists

And there are some downsides:

~Wicked light sensitivity. A lightbulb can give me a sunburn

~Waiting 90 days between treatments

~Burns

When I spoke to the research nurse, I found out the study is being done by a dermatologist as a kind of ‘proof of concept’. If they can prove it works, the doc wants to design a vest that will do the light exposure over a larger area. The research nurse also mentioned having difficulty getting the word out about the trial.

There is no drug company behind the trial. The technology is pre-existing, so this is a trial for how the breast cancer skin mets react. The trial is being funded by Susan G Komen. It’s probably the first time I’ve ever heard of them funding anything….

So in a few days we’ll find out if my pebble tumors can see the light.

Hello Sunshine

Published on March 7, 2010 in Scootering. 0 Comments

I feel like it’s been a very long winter. And checking the calendar, we can see that spring is officially not here yet.

But who cares! Let’s throw caution to the wind…

… And Scooter!!

I’m declaring today the official start of scootering season. Sure, I hit the road one day in January, and PBJ hit the road one day in February, but TODAY is perfect scootering weather, with projected sunshine for the next three days.

I started my scooter day with a ride around the block, then around the rotary, then back home. Turns out I forgot to put my new registration sticker on my plate, so I had to go home and retrieve it off the fridge.

Once I was legal, I headed back out on to the mean streets. Mean because they are covered with sand and riddled with potholes. Sand and Potholes. Sand and Potholes. I repeated it the entire time I was riding.

I decided to run some errands, so it was off to the Depot for some pots and seeds. That ride wasn’t bad, and I though it would be a good idea to put some gas in the Scoot.

I drove back over the bridge and proceeded around the Bourne rotary (as an aside, has anyone ever eaten at the fish/lobster place that looks like a lighthouse??). Just as I was going to exit onto MacArthur Boulevard, I caught a glimpse of what I thought was a shadow. Turns out it was a pothole about a foot deep right where I would have scooted if I had been going faster.

I was getting hungry, and wanted something different, so I scooted down to East Falmouth to try a little hole-in-the-wall chinese food place. It’s the only one in East Falmouth, so I won’t call it out here, but just let me warn you to stay away. Very far away. The rice was recycled, the beef had no teriyaki, and the chicken fingers weren’t crispy.

Next time I’m going to try the Pizza place next door.

I was able to fit everything in the trunk of the scoot and made it home without issue. It was a great scooter day.

And somehow, it only ended up being 3pm and I was a little confused what to do. So I did nothing the rest of the day.

Oh Yum!

Published on March 6, 2010 in News Commentary. 0 Comments

Aren’t we all in pursuit of perfect pizza??

http://www.washingtonpost.com/wp-dyn/content/story/2010/03/02/ST2010030201126.html?sid=ST2010030201126

Thanks Jenn!

Flexy

Published on March 5, 2010 in cancer. 1 Comment

Thursday morning I woke up at 4:30am and could not get back to sleep. A net loss of 90 minutes sleep time. I was certain that an early afternoon (if not late morning) crash was going to happen. Surprisingly it didn’t.

Last night I started to prep for bed early. I am a girl, and as such, it takes me forever to do anything once I am in the bathroom An hour is kind of standard. Dressing the tumors doesn’t really help with my time management either.

Anywho, I was in bed around 10pm, just as the BBC was coming on the radio. I didn’t feel particularly tired, but somehow I fell asleep pretty quick.

This morning I woke up around 5:30am (BBC back on the radio too) and took my time easing into the morning before the alarm went off. For the second morning in a row, I did not use the snooze button.

I’m starting to wonder if the nerve blocks in my back are helping me sleep better then I realized I was suffering. I had someone comment yesterday that I appeared to be moving around easier, that I wasn’t as stiff as I had been looking the last few weeks.

That’s probably true.

You start to not notice how uncomfortable you really are when you are uncomfortable all the time. It just becomes a part of everyday life. Now that I’m not so uncomfortable, I feel better overall.

It could also be spring is on the way. I know, right now there are a couple of inches of surprise snow outside, but this weekend is suppose to be warm (good-bye snow!). I’m actually looking forward to getting outside in the fresh air. In a few weeks I’m thinking of doing some spring cleaning.

So not like me at all.

Be careful what you wish for

Published on March 4, 2010 in cancer. 0 Comments

My nerve block has kicked in pretty good. This morning, while in the shower, I wiggled my tumors in the back cluster. No pain.

This gave me a burst of bravery!

I took my body sponge and really scrubbed good. I mean, nothing was going to hurt or cause me pain, so why not go to town??

I lathered up from head to toe. Then as I started to rinse off I looked down at the water going in the drain. It was awfully red.

I had scrubbed a bunch of my tumors right open in my zeal to clean pain free. I’m glad I bought a case of ABD pads… looks like I may need them.

Crossed signals

Published on March 3, 2010 in Weather and cancer. 0 Comments

After the gorgeous weather yesterday, I somehow missed the fact that it would be snow, ice and wind driven rain today.

Not exactly the best driving to Beanville weather.

But Hump Day is winding down. And I’m still waiting for my nerve block to fully kick in. I’m going to preemptively Lidocaine lots of my tumors before crawling into bed tonight. The whole going to bed and then getting up to Lidocaine tumors has not worked out the last few nights.

Duh.

*********************************

I interviewed the Phase 1 oncologist today. Dr T really got my dark sense of humor, which made me feel at ease. Let’s face it, humor is important. I also put in my request for a Big Blue Chair (BBC) if I end up in the Clinical Research Center (CRC) for any length of time. I think napping in a BBC is so much more comfy then the beds that I forever slide down in.

As for “options”, Phase 1 is so completely different then the two’s and three’s. It’s all slot driven wait lists. And I don’t mean waiting for a stool in front of the one-arm-bandit at Foxwoods. Fortunately, you can load your name on all the wait lists at the same time, so that’s what they are doing with my name. I’ll be famous yet.

Down side is that doing the GDC/TDM1 trial burned a ton of future bridges. The GDC drug (known as a P13K inhibitor) is the next big wave in the drug design world. And once you’ve tried it, you can’t try it again. Previous use is considered an “exclusion” factor. Sadly, Jenn and I really think the P13K was what made the TDM1 work. Now we’ll never know for sure.

And all the time in Beanville doing all the Phase 1 requirements is going to be a tough sell for both my projects. I know they’ve been real understanding up to this point, but the afternoon project may not be so understanding when I’m missing several days a week. The morning project has more ‘flex’, so I think in the long run, it won’t be so bad.

I was thinking of ways to mitigate all the away time. Both projects do have some Work From Home (WFH) potential, but it requires having a Windoze operating system, and my portable system is of the fruity variety. Just more to think about I guess.

The funny thing is, in the last week I’ve picked up about five more email addresses for doctors and nurses in addition to the small group I already had. I tell new doctors to not call me, just email, and they all seemed relieved. I figure that being up front about not answering the phone (like when I’m driving, or know that I don’t have good cell reception) is the best policy. So far they have been in agreement that email is the ideal form of communication.

So I wrote just about everyone an email today. I made a point of saying I was keeping them all in the loop so I could come back.