Saturday, June 6, 2015

Operation Friend VACA - Chicago

One of the hardest things about moving to the East Coast from SF 7 years ago was leaving my best friend Diana. We had worked together at Riordan HS: an all boys school, which presented us with a daily laugh track. Other than my college best friend Sasha, who I lost to cancer this year, I never knew two girls could be so close. Diana is my sister, and I miss her everyday. With Sasha gone, I understand more than ever the urgency of making time to see each other - especially since anyone who knows me will tell you that I avoid the phone like the plague. Thus, "Operation Friend VACA" is in effect.

Mission: plan a 4/5 day getaway for my best friend Diana and I to reconnect in July

Challenge: cost (we are both teachers) and distance (I live in NYC, Di lives in SF)

Our Previous Trips: Nicaragua, Vegas, Key West, Santa Fe

Possibilities: Puerto Rico, Austin TX, Savannah GA, Chicago IL... After some preliminary checking, I found the most cost effective from both SFO and JFK is Chicago:


Inbound Tues  July 7
SFO - ORD American Airlines Red Eye: arrive in Chicago 5:59 am AA1522
LGA -  ORD American Airlines arrive in Chicago 8:37 am AA307

Outbound Fri July 10
ORD - SFO Virgin  6:40 pm VX 0211
ORD - LGA American Airlines 6:35 pm AA348

Hotels - 4 star

Wyndham Grand Chicago Riverfront $255
Hotel Chicago Autograph Collection $223
Westin Michigan Ave $183
Millennium Knickerbocker $167
Fairmont Millennium $189 special rate (winner!)

Planned Itinerary (all prices for 2 tickets)

Wrigley Field
Stubhub $241
We both love baseball so Wrigley Field is a no brainier : 7:05 pm Wed 7/8 night game against Cardinals - Upper Deck Infield Box 429 Row 1
Best Seats at Wrigley

Architecture Foundation River Cruise
Ticketmaster $102
10 am Reservations on Thurs - arrive 9:30

Hop on and Off Tour
Groupon $64
48 hours hop on and off

16 Best Affordable US Vacations
Fodor US Trip Picks
Trip Advisor: 3 days in Chicago
Top 25 Things to Do Time Out
Must Eat: Deep Dish Pizza
Millennium Park: Chicago Bean
Water Tour Plaza on Magnificent Mile
360 Chicago
Taste of Chicago Festival
Viator Top Ten Tours

I'm impressed with the people from Chicago. Hollywood is hype, New York is talk, Chicago is work. - Michael Douglas

Friday, June 5, 2015

Destination Alaska

With summer coming, it's time to think about traveling. After all - why survive cancer if you don't take advantage of seeing the world? Victor and I love all reality shows Alaska related: Bush People, Deadliest Catch, Gold Rush, and Bearing Sea. So it wasn't hard to pick Alaska as a possible destination. I've done a little research, and planned a 6 day trip exploring Southern Alaska between Anchorage and Seward... Here are my notes:

Anchorage - Girwood - Seward

Anchorage: Thurs - Fri (2) Nights (Grand Hotel $199 walking distance to train)

Thurs Day 1: Fly into Anchorage
Leave JFK 7:15 am - Arrive Anchorage 6:02 pm - Rental Car at Thrifty

Friday Day 2: Optional Day Trip

Sat Day 3:Girwood (1 hour scenic drive south)
Cow Creek Goldmine Panning Experience, Girwood ($20 per person) -  Dinner at Alyska Resort - Seven Glaciers Restaurant on top of the mountain

Alyska Resort
Cow Creek Mine
Late Afternoon: drive from Girwood to Seward  (1.5 hr scenic drive)

Seward AK
Seward: Sat - Tues (3) Nights (Windsong $259 per night)

Sun Day 4: Fishing and Glaciers of Kenai Fjords National Park and Wildlife Refuge

Take a small 6 person boat for a day of sightseeing and fishing. Sightseeing includes Chiswell Islands and Aialik / Holgate Glacier areas. Fishing includes halibut, cod, black bass or salmon. Their goal is to have everyone catch their limit of halibut or salmon. Use "Captain Jack's" or "J Dock" to process fish for shipping home. Miller's Landing (note that rain does not cancel trip)

Monday Day 5: Alaska Sea Life Center, Seward ($20 per person); explore town

Underwater Viewing at Alaska Sea Life Center

Tues: Day 6
Drive back to Anchorage (2.5 scenic drive)
Leave Anchorage 8:50 pm arrive next day in JFK 10:35 am Wed

Flight: $1,400
Hotel: $918
Fishing Trip: $350 x 2 - $700
Gold Panning: $40
Seward Wildlife Center: $40
Seven Glaciers Restaurant (about $100 per person)
Car -Thrifty, PROMO AK15 - $360 unlimitted miles
TOTAL = $3658

Visiting Anchorage
Summer of Sharks at Sealife Center in Seward
Destination Girwood Itinerary
Alyeska Resort
Glacier Cruise Whittier (by Seaward)
Best of Kenai Fjords National Park
Miller's Landing Combo Sightseeing and Fishing
Alaska Base Packages -
Alaska Tour Groups

Sunday, February 1, 2015

Carcinoid Syndrome Flushing

Not very pretty: melted mascara; mangled brows; sour-puss expression; no foundation, cover-up, or blush of any kind. But carcinoid syndrome ain't pretty. This is tell-tale flushing (which happened while relaxing on the couch - no rhyme or reason to it). My other symptoms are on high alert too. No one likes an ugly picture of them blasted on social media, but I made a commitment to be honest about my journey.
Carcinoid Syndrome Symptoms
Flushing feels hot and uncomfortable - like an internal, tingly sunburn. It starts on my cheeks by the bridge of my nose and spreads across my face and chest in a matter of minutes. For me, it usually happens in times of stress or when eating too much sugar. Lately, however, it happens for no reason at all. (I don't drink alcohol, but many have a reaction to that as well.) It is not menopause - got tested for that. Nor is it Lupus, got tested for that too. So it's not rocket science to put carcinoid cancer and carcinoid flushing together.

In the past, doctors have remarked how "good" I look... maybe now, with photographic evidence of clear flushing - everyone can get on the same page medically. Advice for zebras: gather as much evidence of fleeting symptoms as possible - you may just look too fabulous for doctors to consider you ill!

Admittedly,other than regular Sloan Kettering appointments, I've avoided my recent follow up visits with specialists. I feel a bit guilty about it, but sometimes you feel even more sick staring at yet another set of plastic chairs and fanned magazines on a faded coffee table, waiting to be called - only for the doctor to shrug and order more needles, more tests. But now it's time to get back on track and get my symptoms under control again

Thursday, January 1, 2015

Page One

Christmas is about a new baby - new life being born into the world for salvation and hope. New Years is a chance to be reborn into our best selves...a time to start over.

We all have big ideas on day one. Mine is rather simple: be as true to the title of this blog as possible.

I have always been fiercely independent to a fault. After all, I moved to both Mexico and Bali  - knowing no one, and having only a minimum understanding of the language and culture. But in both foreign lands, I managed to rent an apartment, work, and make great friends. I embraced the challenge of navigating new environments... in a way I think these experiences helped me handle living in the crazy world of Orphan diseases.

But when my body turned against me - first with Carcinoid cancer and then a mysterious autoimmune disease -  I had to come to terms with the fact that I couldn't make it on my own anymore; I needed significant help completing even the most mundane tasks. It was tough giving up my prided independence, but I'm grateful and lucky that my friends and family were right by my side every step of the way.

Now that my symptoms are managed, it's hard to justify making time for myself when I have so many other responsibilities at school and home. For example, something as routine as getting my hair cut and colored went undone for six months, and my day-to-day boots were so worn out that they had holes in them. For me, it was easier to pluck out gray hairs and wear thick socks rather than make time to take care of these simple tasks.

Before my diagnosis, I had made a New Year's resolution to be more glamorous - like Jackie-O. Instead of making a new resolution, I'm reviving my old one. I will be kind to myself. I resolve not to see taking care of myself as a selfish act, but rather as an act of self-love that I deserve.