Four Crying Out Loud

Poppy Photo taken by Andy Griffin

I’m doing well. Dealing with treatments, and living life. Here are some interesting links that have piqued my interest lately:

1) The Courtney Harrington LeBoeuf Fund

Courtney died this last Sunday at age 34. I love that her fund that her many friends and family have put together starts with the Breast Cancer Fund:
The Breast Cancer Fund is the leading national non-profit organization whose sole focus is to identify and advocate for elimination of environmental and other preventable causes of breast cancer.

2) Breast cancer rules rewritten in ‘landmark’ study
Just plain interesting in a science-y kind of way.

3) Eat your Veggies! My recipe project continues.

Coming ‘soon’: more mammography/dense breast imaging issues, stay tuned. Get your early detection screening done! Make that appt….

Photo taken by my rather amazing photographer husband this last weekend. photo copyright 2012 Andy Griffin

Chef Ariel Contreras Fox and me at Isa

Sitting with friends, drinking tea, chatting.

Eating at Ariel’s restaurant, watching her shine!

lobster at Acme. Dark photo = No Flash in Restaurants Please!

Walking with friends, all over.

Dog walker crews on the upper east side trying to be taken down by individual dogs on strings. funny.

Yoga class for cancer survivors in Manhattan, with fav teacher Tari

Exploring Noho, Red Hook, Nolita, East Village, and Carroll gardens with Marlin.

Smoked Fish from Russ and Daughters

Eating great food between the long walks . Lobster rolls with no mayo, just freshest Maine chunks. Fancy Isa dinner in Brooklyn. noodles at Momofuku. Fish four ways from Russ and Daughters. Falafel from Taim. The Entire Acme menu thanks to Ariel. Detox tea after that meal! Home cooked meals with salads and vegetables in Noho, thanks to Devera and Michael

View from gorgeous loft in Noho where I got to stay! Thanks D & M

more photos just because:

Noodles at Momofuku

View from my window, beautiful fire house

visiting the canals in Venice

The Wig. Looking authentically real-hair like due to my lack of interest in 'styling' it.

2. The red hat with the fringe. I bought this ‘halo’ of hair, just a fringe on an elastic band, but a bit fancier than that. You then put it on like a head band, then put on any hat at all, and voila, no chemo-girl look!

Red Hat

Before I get to #3, I will give a brief update on the Health Front: Short story = the clinical trial is WORKING. My doctor gave me a high five. It was a brief, smile-y doc visit. Either the Taxol and or the Merck 20XX trial drug or both are working. The cancerous lymph nodes have ‘resolved’ (aka the pet CT scan didn’t see any cancer in them) and the bone metastases are quieted down. I got one question from the 11 year old son of a friend: Does this mean no more cancer? No, Kobi, unfortunately it doesn’t mean that… I still have stage 4 cancer and I will remain on this balding fatiguing treatment. But it does mean that It’s all slowed down and I should continue to live my life, cross my fingers, meditate, cook and eat vegetables, and did I mention just living life? Ok. now you all know.

3. The Chemo Girl Hat, this is a hat I actually like with no hair underneath. It’s now what I mostly wear when I’m at home.

The Blue Hat

wigmaster at work

I’m still in wig mode, figuring out how to deal with a bald head. I love my wig! But it is a bit scratchy, so I only wear it when I’m out and about. UCSF hosts the SF Opera’s wig master once a month: he donates his time to cancer patients, helping them figure out how to deal with their wigs. I got to go last week. It was a fun outing for friend Bethany and me.

1) The woman who works in the shop that has hats, wigs, scarves, the woman who deals with cancer patients and their head covering needs all day long asked if I brought a wig with me for the wig master to help with. She didn’t know I was wearing my wig, or that it was a wig at all. Score!

2) The wigmaster took 45 minutes with the nervous man and his more-nervous wife before me, trimming the wig, holding the hand of the wife who clearly cared lots more than her wigged husband. At the end, he looked GREAT, and they all left happy. My turn = 15 minutes, where the master told me I had a wonderful wig, that human hair really was worth the extra expense. He showed me the details of my wig that were extra special, he dampened it a little and scrunched it up a bit, and gave me a couple of other tips. Leave-in conditioner, in tiny amounts; wet and shake it and let it dry overnight, things like that. He also told us that the human hair wigs at the Opera have lasted up to 30-40 years, but the synthetic ones often have to be replaced within 1 year.

3) I have another little trick that I discovered at another cancer head covering shop: The Next Step: a halo! It’s a head band of sorts with a fringe of (synthetic, but cheap!) hair to wear under a hat.

That’s all for now. I’m getting scans next week, so we’ll know more about this new fancy treatment and if it’s working. Fingers are officially crossed. signed, four crying.

ps I am having troubles with wordpress… so no photos today, I’ll try to fix it soon! photos coming as early as I’m able to figure it all out.

Valentines Day 2012 reminds me of Y2k Easter Day. (2000 for you youngsters who don’t remember the dire Y2 k warnings about computer meltdown tragedies.)

What these two days have in common for me is that my hair began to fall out en masse upon waking up. Yes, it’s wig time at last. Friend Michelle will buzz my head this week sometime and that will be that. I plan to lure Friend Janet or darling daughter to a makeup counter soon to get some eyebrow pencil advice, no waxing or tweezers needed!

Discussing fake hair and eyebrow pencils may seem odd and or vapid, but these are on my mind. I continue to not want strangers to feel sorry for me, please just sell me the coconut milk, raw cheddar cheese, whole wheat bread, and gluten free crackers in peace!  (Just a few things I buy for myself and my family on a regular basis.)

Vegetable Plate at State Bird Provisions

How am I doing? I’m trying to inspire myself to cook more in general, cook vegetables everyday, and ‘deal’ with the side effects as best I can. So far so good. Today is supposed to be the most difficult day (48 hours after the infusion of taxol) and although I feel a bit shaky and flu-y I’ve managed 2 loads of laundry, 2 naps, 1 load of dishes, and some paperwork even. It’s only 1:20pm. I ran into one of my vegetable customers on Fillmore St. in SF this week (day before treatment: dinner at StateBird, see, my life is *great*) and she said everyone worries about me when I don’t post more frequently. So I’ll try! Even if they are the brief posts I love. I’ll work on that. Meantime: enjoy the weather, if you have it as nice as we do today. -four crying

Dessert Counter at State Bird Provisions

Pinkgate is upon us. I’ve been flooded with links and calls to action and articles all about the Komen/Planned Parenthood story-of-the-day. The most succinct article I’ve found is from the NYT this am:

Outcry Article from the NYT

Pink Schmink I say. It’s true I have breast cancer, and yes, I’m aware of the disease, thank you. I think many people are aware of the disease. Time to fund early detection and research and stop the pink doo-hickey production.  In October of 2010, I was just about 3 months into my New Life as a breast cancer recurrent, and rather reeling from this news after being in remission for 10 years. I walked into a Safeway (that was unusual, I don’t usually shop at mainstream grocery stores) and I was bombarded by hot magenta everything: bags, employee uniforms, giant pink ribbons floating from the ceiling. Really? I’m still scarred from the experience.

Here’s a past post of mine on cancer groups that merit my admiration for donation. Not all breast cancer either!

me in my favorite wig shop during the wig crawl. This wig won the contest

For those of you who know me in my outside-the-blog life: how am I doing? Ok! I’m two taxol treatments down, and an unknown number to go. Yesterday I felt a bit queasy and green around the gills, but still managed to live my life: hair cut for darling daughter, grocery shopping, nap, walk in the morning, the usual! I expect to be much better today, and if not, for sure tomorrow! It’s all a cycle.

The photo is a follow up to my wig crawl post.

I thought of that title with movie making in mind, picture the director yelling the title with the loud clacky board thing shutting close when its time to be silent on the set!

Im back on a clinical study.

Today I get my own hospital room from 8 am till midnight! friend Debby brought me here and got me settled with my chai after blood work… Now I have a good 5 hours of infusions of all sorts of drugs: herceptin, pacxitaloxol ( sp!?), benedryl, steroids, and at least two others I dont know the name of.

Whats different so far from regular chemo is that I get my own room, which I like very much. I dont have to make small talk with the person sitting in the lazyboy chair next to me. I even get my own bathroom. Friend Kelly will bring me soup in a couple of hours, and Friend Arezoo is hoping to visit too. Friend Dan will pick me up when Im at last done around midnight… And tomorrow is acupuncture with Friend David! Ive not even listed all the friends who have offered to help. Im feeling very blessed right now and enjoying my little vacation, even if no movies are being made.

I made this post from my iPad at UCSF, and it wont upload photos properly nor can I figure out how to link. So I owe you a real post when Im back at my genuine computer, with a photo or two from the wig crawl! Ill see about taking photos of the hospital room, but its kind of a boring photography subject. We will see. – fourcryingoutloud

No needles! I confess I don’t know exactly what an ode is. I love echocardiograms because there are no needles or IV infusions. Here’s what my experience is for the uninitiated:

echo drawing I found with help from our friends at Google

I’ve rarely had to wait long for this procedure, they are scheduled such that if your echo is at 3pm, you go in at 3pm.

You enter a room with your own personal echo technician. After a few questions tapped into the computer, s/he leaves the room for you to put on the cotton gown. (UCSF always uses cotton gowns instead of paper. I love that.)

The Technician then comes back and and you lie down on a table and the lights go dim. About 3-4 round doodads like big round bandaids get stuck around your midsection and chest and those are hooked up via small cords to The Machine. Then you relax while the technician checks stuff, then waves the magic wand with a bit of gel straight on your skin, but the gel is at body temp. I nearly fell asleep for my last one.

Did I mention?: No Needles!

Meantime back at the ranch:

How am I doing? The truthful answer is I have no idea. Here’s what I do know: I will start the Taxol etc chemo at the end of January. It’s really called paclitaxel. I had this stuff 11 years ago with my first go around with breast cancer.  I’ll be part of a Stage 1b study so I can get the second drug that’s not named yet, just letters and numbers. I know that my mets are all growing and most are more metabolicly active, so I’m anxious for the toxic taxol since that will likely truly beat back the mets. For those that are unreasonably hopeful: The taxol will not cure me, but it will buy me more time. Just saying.

For the next two weeks I’m busy with doctor appointments, walking, avoiding all sugar and eating as well as I can, having fun, more doc appts, wig searching, and more. Please suggest fun. I’m open where my schedule is available. And I want a new (to me) small car (mine was rear ended/totaled in October), so that’s another project  (looking at Fit, Focus and Prius). Cleaning up piles and ‘stuff’ in my life and house is another project. And so it goes!

ciao for now.   -four crying.

ps: 3 fun recent just-because food photos:

Dim Sum in SF at All Seasons: made from Taro and more

Fancy Shiu Mai! the threads on top were

great cut leek photo: taken by friend Michelle D

Broccoli Pesto Quinoa from 101 Cookbooks

As promised: a few favorite food sites. Last paragraph is my own humble cancer news. Happy New Year to all!  -four crying

101 Cookbooks: I love Heidi’s recipe writing style, I love her recipes, and many use off beat ingredients like red quinoa or chickpea flour. And her photography is simply fabulous, and worth taking a look even if you never cook at all.

Google: When I have radicchio, preserved lemon, and some wild arugula, I google it, and voila! There’s really no excuse for me to keep all these cookbooks anymore, but I confess, I do keep them. I’ve shed about 10-15% of the books in this photo, but I could easily shed more like 50%. Perhaps that will be my New Years Resolution….

Inside Scoop: This is the food gossip site of the SF Chronicle. It’s interesting to me personally since my business is selling veggies to restaurants in SF. I need to keep up on who’s closing, who’s opening, who’s got sketchy tipping policies, etc. I know it’s likely to be of limited interest to many of my FourCrying readers, but I’m listing *my* top food sites.

Punk Domestics. The name alone is worth it. The links and recipes they post are always interesting: with titles like Juniper Bitters, Purslane Tzatziki, and more.

That’s enough food for now. Cancer News Time:

It’s Official: my cancerous lymph nodes in my neck are growing. But after seeing my doc yesterday I feel better! That’s because I knew they were growing, there was no mystery there. She came up with a New Plan for the New Year and I’m feeling proactive about the whole thing. Starting yesterday I started a fun new injection called faslodex: more homone suppression. I will stay on Herceptin and Tykerb… and then in early January I’ll have yet another pet scan and I may be able to start a new study that includes: yes: TAXOL.  Wig and fatigue fun. Friends: if any of you have wig advice, please advise in a personal email to me. I want high end believable wear it everyday kind of a wig. 11 years ago I did the taxol stuff and other icky real life big guns chemos and was bald and just wore hats: I was fine at home but I tired of strangers in stores feeling sorry for me. Wigs it is! I might or might not post photos in Feb of the wig fun. We’ll see…

signed, four crying out loud