Four Crying Out Loud

I’ve never gotten a tattoo. I’ve never even pondered getting one. I was surprised being a radiation virgin when the tech guy came at me with a tattoo pen and assured me it wouldn’t hurt very much. “You will get 6 dots.” I replied: they aren’t permanent, though, right? “Permanent” he said in his emphatic, fluent, but accented English. ok then! So I now have 6 tattoos. They just look like little blue spots where I might have accidentally jabbed myself with a pencil long ago: and all in my midriff. Since I’ve been beyond the Bikini Years pretty much since I was born we are all safe from viewing said dots.

Next Topic: Crowd-funding for cancer research: My children’s science teacher is first a scientist and second a teacher: she’s quite good at both. She’s started a small inquiry into an interesting project she worked on long ago using magnets and chemo. Read more here, and if you can donate $5 (or more) it all counts. Thanks for considering.

Final Topic: oh: Why did I finally get some radiation after 13 years of on and off cancer stuff? Well… my last scan showed growing mets (@#^&*^@@&#%!) and these included enough growing mets in one of my hips and one of my vertebrae that I needed some radiation to get it under control. It worked! no more pain. Phew. And the whole 5 days of radiation treatment was a piece of cake: no needles, few side effects. Unless you count the fact it compromised my bone marrow, yes, except for that. sigh. That fancy new TDM1 treatment I was on didn’t end up working for me, so now I’m on a new thing that includes Taxotere among other things. I’m just continuing to ‘roll with the punches’.

Again: Poikey the Cancer Killer: Please view video and consider making even a tiny donation.

xoxo FourCrying.

** photo of Blueberries taken by me. Inserted into this post just because, this photo has nothing to do with the post. But blueberries are in season in my neck of the woods and they are sooooo delicious!

Vacations ~ Why take them? So many reasons. I love unpacking into the guest room/onto the couch/into the hotel room: very few things fit into a suit case.

I’m in a routine right now of treatment every three weeks, then a week of headaches and fatigue, so I’m trying to figure out how to get the most out of those 2 weeks of feeling better! Walks on the beach, movies with friends, Tripoly in the middle of the day with friends who also have a bit of daytime available… plus the usual laundry dishes roulette that feels like my life.

Enter friend JR:

JR: We have a week’s timeshare we will lose if we don’t use it by June 1st. Everyone we know has kids, jobs, mortgages, etc. But: Could you use it?

Me: YES.

Fast forward to me today in Lake Tahoe: alpine walks, biggest bathtub I’ve ever been in, mental and physical space to sort through photos pre digital and some digital too! I will skip the steak houses, magic shows, casinos/slot machines. Hiking trails with small snow patches strolling through the pines and sun? I’ll take it!

A week from today I have yet another pet scan which may yield bad or good news, may change the current treatment into something entirely different. For now, just enjoying where I’m at: 7000 feet altitude surrounded by pine trees. I will enjoy my coastal redwoods and bursting rose garden when I return home. for now: vacation.

Double mastectomies have been on my mind. I wish I’d had one back in 2000. I didn’t clinically ‘qualify’ since my type of cancer wasn’t the 80% chance of popping up in the other breast, I would have had to pay out of pocket for that second boob removal. I wish I had so that I didn’t have to worry about a new primary breast cancer. I would have skipped reconstruction, which would have skipped the lengthy and in my opinion ultimately unnecessary reduction in the healthy breast. Today my boobs would match. Back in 2000 I would have spent far less time on the operating table, and the overall cost of my surgeries would have been less, though part of the cost would have been out of my pocket, instead of the whole thing being covered by insurance. It’s nuts, right!?

Fast forward to today: I’m not BRCA positive, but I likely have a genetic link somehow. My maternal grandmother had breast cancer and so did her mom! yowsa. I have a friend who does have those genetic mutations, even her brothers are at risk for breast cancer and other cancers. Oh, and her 30 year old daughter. double yowsa. But should this hardworking career woman of 31 have a prophylactic mastectomy? The ‘experts’ aren’t in agreement.

Fast forward to 2013 and I still have that pesky saline implant and I don’t match up at all but scarves do cover many lopsided issues. I’m on yet another brand new treatment: Kadcyla. It’s the fancy new drug just approved from Genentech. I’ve only had one treatment, and it did put me out of commission for nearly a week. I have two weeks of Good Days though since it’s an every 3 week kind of drug. Now I just try to get stuff done, have some fun, do some walking, eat my vegetables, get to meditation class, and wait for the next round of scans. I call it: My New Normal.

peace. -four crying

Just Because Photo for the day: My son off to India, this was taken at the airport. It gives you an idea of what I look like today and a giggle at the fact he’s actually neither LDS nor leaving for a 2 year mission….

I made chile oil this morning. I used a light vegetable oil and some chile flakes I made 2-3 years ago. It came out great! That about sums up my life at the moment. Small projects. Small excursions. Waiting. I will see my ‘fancy doctor’ on Friday of this week, then I’ll know more about my next treatment… in the meantime, just regular life:

- Practicing driving with daughter
- Making chile oil
- Walking every day
- Reading: books for myself, for bookclub, and some of the books Daughter is reading. All are fun!
- Putting dinner together: dinner I’ve made, Husband has made, Teen Kitchen Project has made
- Visiting the Monterey Bay Aquarium
- Each morning tackling paperwork: always health insurance stuff (always!), putting together final documents for son to travel to India, canceling magazine subscriptions, recycling junk mail, it really never ends, does it?
- Drinking tea, preferably while the cat is purring in my lap

and more. every day. – fourcrying

Hello BlogWorld. Yesterday I multitasked like a champ: darling daughter wanted to take several friends iceskating in our fancy city north of our home: a 90 minute drive. Easy! I had to go to that same city for my new clinical trial chemo. I already had a friend driving me, I have a minivan, why not take 6 girls with us, drop them off at the outdoor ice skating by the bay, then go get medical.

But! 7 girls wanted to go. Enter Friend Barbara who heroically drove two of them before her own SF errands, dropped them off to meet up with the other 5. Then fun was had by all. Then a different 2 of them took CalTrain home, so all were safely delivered at the end of the day.

But Wait! Another Clinical Trial? Yep. My scans from the fall showed slow growth so I was out of the last clinical trial. Then I started this new one, with even fewer side effects, which means it’s been a pretty great 8 weeks. Oh, except for those 6 days when I got thrush so painful I barely ate. 2 bites of cottage cheese twice a day, along with some weak green tea and frequent warm salt water rinses. Kind of like being a super model minus the cigarettes and salary.

The every-8-week scans for this newest trial came back: no new mets and slightly smaller existing ones! I’ll take it. So I had treatment #3 yesterday, picked up a gaggle of girls, then headed home.

All is well at Four Crying Out Loud.

What I love about living fewer than 2 hours from San Francisco:

1) GREAT oncologists, including my own special fabulous one.

2) It’s a walking City, soooo much fun to walk around this city.

3) We have many restaurant customers here, so I have a convenient excuse to eat out when I’m here: we have to show ‘our’ chefs the respect of visiting their restaurants. Ok, I just want to go out with my friends, but indulge me a little.

4) Wonderful friends. Including friends that insist on driving me home from chemo if it’s raining (yes, that’s you Kelly!), friends who give me the key to their house and let me stay anytime (just one walkable mile from UCSF!), friends who love to lunch or dinner with me at ‘our’ restaurants, and all in this great walking city.

4.5) The house where I often stay is also an art gallery: our friend/host is a glass artist. I counted: on just the first floor alone he has 62 stunning glass pieces he created himself, mostly at Public Glass.

5) Being about 90 minutes away from not just any city but THIS city means my local friends are happy to drive me to the hospital or doctor when I need a ride, because then here they are: in SF.

6) Running into friends in the street. Today: on Fillmore running into friend Patty U. Yep: quick lunch with her tomorrow after blood draw but before she departs on her next great international trip.

7) As soon as I post this there will be another 6 reasons that will come to me. for now, here we are.

Photos: by me of the lovely home where I often stay when doing treatments here in SF. Glass pieces all done by great host D. Thanks, D!

Yes: It sounds like a pile of SAT flash cards. I’m starting my 3rd clinical trial in fewer than 2 years tomorrow. My nurse practitioner swore it’s exciting because this drug is targeted to the actual cells that need it. The first paragraph of the 26 page consent form is funny, I recognize the following words out of that first four-line paragraph: Safety, Study, Of, Combination, Patients, Advanced breast cancer. But I don’t pretend to be very medical at all, and I’m surrounded by folks that are looking out for me in my team and my friends who are indeed more medical than I am.

The short story of this clinical trial is “we’ll see” if it slows down my growing mets, if it does it could ‘buy’ me another 6-12 months of stable disease and if it doesn’t I’ll go on to the next thing in 8-16 weeks. My oncologist gave me a menu of 5 different treatment options, I went with this clinical trial since it’s ‘exciting’ and this targeted therapy won’t be available to the general public (metastatic breast cancer general public of course) for another 3-4 years.

There you have my cancer thing in a nutshell! Today I got an echo cardiogram, EKG, bloodwork, and I tried to hand over a decent urine sample, easier said than done! Harumph! These next several weeks should be quite livable as the side effects aren’t supposed to be too harsh at all. My hairs might even continue to grow back.

photos? only of India of course since I did just get back from a GREAT trip and who wants to see photos of EKGs, The Merrimack Corporate Campus, or other boring photos that might be thematic to this post!? Nope, colorful photos of Trip to India it is! signed, four crying.

Ok, I leave India in 3 hours. It’s been an incredible trip. But that doesn’t tell you anything, does it? Except that I wasn’t robbed, I didn’t get sick, and so on. I’m not sure where to start or end on ‘how was your trip to India’ question… so I’m just going say: I LOVE digital cameras!

I am old enough to remember when everyone had film cameras. One had to be careful of the film going through the xray machines in the airports, one had to wait for the film to be developed, and my personal favorite, one had to pay for and waste the paper on all the dud photos! No more! Some modern conveniences are just fab. Let’s admit it.

to recap, here are some of my favorite photos from this trip, I’ve labled most of them… please comment on any if you have comments! Have you been there yourself? Questions? Maybe I mislabled them!

Ganges/Haridwar

Musoorrie

Darjeeling

Kerala: (running out of time, about to go to the airport in Delhi where we have no wifi, so a different format for these links:)

https://picasaweb.google.com/114054719211206109936/Kerala?authuser=0&feat=directlink

Ajanta:

https://picasaweb.google.com/114054719211206109936/Ajanta?authuser=0&feat=directlink

Mumbai in 4 hours:

https://picasaweb.google.com/114054719211206109936/Mumbai?authuser=0&feat=directlink

Rajastan:

https://picasaweb.google.com/114054719211206109936/Rajastan?authuser=0&feat=directlink

Jaipur:

https://picasaweb.google.com/114054719211206109936/Jaipur?authuser=0&feat=directlink

Delhi:

https://picasaweb.google.com/114054719211206109936/Delhi?authuser=0&feat=directlink

When I get home?? Scans after landing in SFO but before I even get to go home. Monday chemo, Tuesday (I hope!) appt with scary smart doc, then new treatment plan asap. Back to the New Normal I got to escape from this trip. xoxo -fourcrying

Have you ever had a cup of Darjeeling tea? Since I’m a tea head of course I’ve had plenty, so I wanted to make sure I went to Darjeeling while in India. We did all kinds of things while in Darjeeling including getting a dawn peek at Mt Everest and some great views of Kangzhenjunga.

Back to Darjeeling and that first photo. A dorje (second to left thingie in the photo above) is a lightening bolt/ceremonial object used in Tibetan temples: looking at the wiki page it’s got other things going on in other countries! Darjeeling is named from that Dorje: It was Dorje-ling and the Brits changed the name to Darjeeling. We had an *amazing* guide who truly showed us around his town. Tea gardens, Mountaineering Institute, even the toy train which is historical but… too much coal not enough road space, I say get rid of it! The best parts of the trip were of course Karma (yes, that’s our guide’s name) taking us to his favorite restaurants and especially his mom and dad’s hidden restaurant where they are famous for their chicken wings and the town all knows about it.

Below are some more photos… while in Darjeeling we had *very* little internet, I’m at last posting something here from Delhi where they have the internet thing figured out!

Newlyweds from ‘the plains’ (somewhere from the rest of India, not from the mountains!). We kept running into them and helped them take photos so they would have photos with two of them both in the photo!:

The following 3 photos are from a great lunch Karma’s mom prepared for us:

And the photo with the Himalayas: this is Kangzhenjunga:

I have more darjeeling photos, Here is a Picasa album of Darjeeling photos:

https://picasaweb.google.com/114054719211206109936/Darjeeling?authuser=0&feat=directlink

More photos from the trip so far:

Kerala:

https://picasaweb.google.com/114054719211206109936/Kerala?authuser=0&feat=directlink

Ajanta:

https://picasaweb.google.com/114054719211206109936/Ajanta?authuser=0&feat=directlink

Mumbai in 4 hours:

https://picasaweb.google.com/114054719211206109936/Mumbai?authuser=0&feat=directlink

Rajastan:

https://picasaweb.google.com/114054719211206109936/Rajastan?authuser=0&feat=directlink

Jaipur:

https://picasaweb.google.com/114054719211206109936/Jaipur?authuser=0&feat=directlink

Delhi:

https://picasaweb.google.com/114054719211206109936/Delhi?authuser=0&feat=directlink

I loved Mumbai, and 5 hours wasn’t enough. Here is a photo album with a few photos from our few hours of touring around.

Interesting fact that I learned yesterday: Mumbai is a word from the fisherfolk that lived here before it was a city: from wikip: The name Mumbai is derived from Mumba or Maha-Amba—the name of the Koli goddess Mumbadevi—and Aai, “mother” in the language of Marathi.

BUT the colonial name of Bombay which sound similar is not related to the name Mumbai! Bombay came from the Portuguese settlers for ‘pretty bay’ or “Bom Bahia”. This name possibly originated as the Old Portuguese phrase bom baim, meaning “good little bay”,[23] and Bombaim is still commonly used in Portuguese.