Day 49

November 21st was the 49th day after Sandra's death. We held a memorial service at the Brooklyn Zen Center. Day 49 is a significant day in the Buddhist tradition because it's believed that it takes 49 days of transition time from this world to the next. It's a period of time needed for the consciousness to find a new channel, vessel, or place to go.
Some people have told me it's simply because it's going to take around 49 days for the reality of death to start to sink in. Either way, it's a big marker so the memorial service was very timely.

Greg, the priest residing over the ceremony, talked about our intentions for the service and that to grieve a loss and simultaneously celebrate a life we need an open heart - a heart that is more often then not broken open in a most painful way. Honestly, after hearing that, I was a bit overcome and didn't hear what he said next. I tuned back in as he was talking about the mystery of death which is the mystery of life, and how we just don't know what happens after death but we bring the intention to help Sandra's transition nonetheless. He referred to Sandra as a pioneer, one who has fearlessly taken this journey before us, who knows by how many years, months, or days.

In the spirit of helping clear all obstacles from Sandra's path of transition, we offered incense at an alter with Sandra's picture and some of her ashes while the rest of the sangha (congregation) chanted.

Then Greg talked directly to Sandra (which is also another part of the tradition). As you could imagine, this was very moving and powerful. He talked about being deeply touched by Sandra's presence even though he met her only once. After Sandra was diagnosed with cancer for the second time, she wanted to meet with Greg to see if the Zen tradition could offer her a perspective on the whole life/death/cancer thing that might help her deal with the upcoming onslaught of treatments. However, Greg was so struck by her attitude of acceptance and inner peace that he said that he left the meeting that day as the one who learned something about life. I think he can imagine those of us who were lucky enough to spend years with Sandra, let alone one lunch!

I was invited to speak, but it would have been useless. I was too choked up by the beginning of Greg's talk, never mind by the end of it. Besides, I talk directly to Sandra every day. Most importantly, I talked with her while she was alive and healthy, and there was nothing left unsaid between us. Anything I would have told her, she knows already. Anything she would have told me, I know already. My gratitude for that gift alone is far beyond words.

I'd like to thank, with as much heart and sincerity as I can muster, Greg for his openness which is apparent by his selfless sharing of his time, words, and compassion. I'd also like to thank the sangha at the Brooklyn Zen Center for their amazing love and support. It consistently overwhelms me.

**Just a small addendum by Greg:
"...the 49 days is not so much from this world to the next. It's more a matter of how long consciousness after death is in transition before rebirth into this world – 49 days being the estimated time it takes for the spirit to be reborn again into a new life. That said, it could be a symbolic number for two reasons. First, as you mentioned in your blog, it could be a ritual device to care for one's emotions. Or, if rebirth is the case, it could be a ritual device simply to mark return when this passage to one's new life actually has many time frames. Some in the Buddhist tradition feel rebirth takes 3 days, 21 days, 49 days or 100 days after death, and in some even feel it's 7 years. After all, everyone taking exactly 49 days seems like a math that might be a little too exact for life!"

California services for Sandra

Memorial Mass - Saturday, Oct 17, 10am at St. Joseph Church, 727 N. Minter, Santa Ana, CA.

Celebration of Life - Will be held in Pasadena following church service. Lunch will be served. Sharing of stories and your memories of Sandra are warmly welcomed.

In lieu of flowers/gifts, or simply when thinking of her - Please support Sandra's favorite organizations and causes (see below):

• www.kiva.org - Lend to a specific entrepreneur, empowering them to lift themselves out of poverty
• www.gildasclub.org - People learn to live with cancer, free of charge.
• www.mskcc.org - Memorial Sloan Kettering Cancer Center. Click "how to help," click "make a gift." Under "ways to donate" select "direct your gift to a specific area of research or treatment" then scroll through "select a fund" to ovarian cancer, then complete online form. Or, simply call 1(888) 675-4438 and direct gift to benefit ovarian cancer research or treatment.
• reduce, re-use, recycle daily
• support local agriculture, shop at your local farmer's market
• become an organ donor, blood donor, and blood platelet donor
  

Please attend the the celebration immediately following the service!
It will be held from 12 noon to 4, care of:
Sonja and Albert (not Alfred) Alarr
999 No. Madison Ave.
Pasadena, CA 91104

Transportation via bus will be provided for those who need it.

Thank you all so much!

Update on Sandra

An update to all of Sandra's dear friends and family. On June 12, 2009 cancer was found in Sandra's brain, lungs & liver. The months following were a debilitating whirlwind of brain surgery, chemo/radiation, transfer of care to Memorial Sloan Kettering, ultimately ending at Calvary Hospital for palliative care of advanced cancer patients. Sandra's fight was valiant and heroic to the very end. At 5:07am, on Saturday, October 3rd, in peace & surrounded by love, Sandra's body released her and forever freed her from human suffering and pain. She was blessed to receive constant love from all of you. Thank you for your beautiful words & tributes already left on facebook. I encourage you to read them all. With love and appreciation - Deanna, Louie, Sally & EJ

2 out of 3 ain't bad, but it ain't good either

so, this past week i had a brain mri and a ct scan of my torso to see where we were with this whole cancer thing. yesterday, ej, my family, and i met with my oncologist for the results. he started with the good news, "we found nothing in your brain." i had to laugh, but he didn't think it was funny. my lungs seem to be fine too. great! unfortunately, the cancer has been very busy growing in my liver. mr. oncologist refers to it as a tumor singular, but really, it's multiple growths.

this coming week we find out if radiation is a possibility. a change of chemo drugs is another possibility. and there's also some cutting edge mri/ultrasound procedure in boston that i may be a candidate for.

i need to take a break now. i'll try and blog a little more often than once a month. xoxo

my new perspective

the anger arrived yesterday.

up until then, i was grudgingly accepting that i had been recast in this role. resigned to take whatever steps i needed to do my part well. i still feel that way, but now it's colored with something else. somewhere on the way to radiation yesterday, i was surprised by the sudden anger glowing in my belly. not surprised that i was angry, but that it took so long to show up. i thought, this whole situation is stupid. these toxic treatments are ridiculous. i can't believe this is what my life is right now.

i don't believe that cancer is a punishment for something i did or didn't do, but yesterday, i did indulge in some "but i did everything right the first time!!" thinking.

today i have round two of chemo, followed by afternoon radiation. after an abbreviated chunk of solid sleep last night (it's more about quality than quantity these days), i'm feeling the useful side of anger. i had been struggling with dread about chemo because two weeks ago, the combo of chemo and radiation really did me in to the point that i felt brain surgery was a breeze compared to these treatments. i didn't want to repeat it, but now i can focus my beam of anger right on the cancer. "you wanna play dirty? fine. i am so ready, you nasty little points of darkness, sneaking and slinking into my organs. i've got poisons comin' right atcha, not to mention my beam of anger that sees all. i am ready for combat. send me in, coach. i'll use my fists of fury, mano a mano, you damned dirty cancer."

i'm putting on my war paint. i am rambo. i am sarah connor in "the terminator". i am simon pegg in "sean of the dead". gimme my bat, i'm ready.

starting the day with doctors

waiting for the doctor with my list of questions.


hello.
it's been a while. too long, perhaps. i just didn't have it in me. i had no urge to create, no desire to share, but in the last few days i've felt that old need to go public again...must be spring...thank goodness that emotional rollercoaster seems to be evening out.

this morning, i had my first check up with my oncologist. these will be happening every three months and consist of a pelvic exam and a blood draw. occasionally, a ct scan. i don't know why it's taken so long for this to sink in, but this morning i finally realized that my oncologist really isn't interested in any physical symptom that doesn't directly relate to cancer.

"my eyebrows grew in, but now they seem to be thinning out again. is that a sign of something?"
"well, they look good to me. i don't think it's anything."

"hot flashes. they're still going strong."
"i can prescribe ambien to help you sleep. or paxil. it's usually for depression and anxiety, but for some reason it seems to cut down on hot flashes."
"no, thank you."
"oh, that's right, you don't like to take drugs."

"this joint pain that started after chemo is still with me. would something like glucosamine or tumeric help?"
"well, chemo related joint pain is rare. (psst, it's not.) you can take motrin or something like that or, if you want, i can refer you to a rheumatoid doctor." the other doctor joked, "you probably know more about that stuff than we do."

funny.

a blessing and curse

so here it is.

i thought that once i slogged through chemo and heaved past a hysterectomy, i would be home free. i couldn't wait until spring because that's when i would be beyond all the physical trials and with my "complete response to treatment" i could get back to doing laundry and picking up 2% milk from the store.

the good news is that i can, in fact, do laundry and buy milk. the surprise for me is that my emotions have gone bonkers. i can cry at the drop of a hat, for happy or for sad. it can be a commercial, a phone call from a friend, a dream. i can be walking down the street thinking how fabulous the world is and within the same block want to cry for my friend who's in the hospital. last night, i was at the stove stirring enchilada sauce and listening to the musical a little night music. judi dench started singing "send in the clowns" and i could feel the waterworks begin. i had been listening to music for hours, but all of a sudden judi's scratchy voice starts in on "isn't it rich..." and i'm crying into my mexican food.

even though i often feel as if i'm living life in the raw with exposed nerve endings reaching everywhere, i'm feeling better than i was on monday. i think it helps knowing that this is probably a mix of hormones (or lack thereof) and a sort of post-traumatic reaction to my bout with cancer. maybe it's the other side of all those days i spent my energy being upbeat-no-matter-what-all-i-see-is-the-silver-lining.

i feel like i'm pms-ing.
a lot.
lucky, lucky ej.

blue monday

sigh.
such a weird day.

here i have my health, i'm not in pain, i have a roof over my head and food to eat. so what is my problem? i've got plenty on my list of things to do; organizing, cleaning, exercising, blogging, emailing, and yet i can't get motivated to do anything constructive. i did make oatmeal this morning, but mostly i distracted myself by playing scramble on facebook while telling myself that i can think better while finding words amongst the random letters which is the whole point of scramble, but thinking better is only occasionally true and that makes me grouchy. so i stop, but i just feel gross. and ridiculous. and then i wait too long before eating lunch so i'm even grouchier. i couldn't even manage to shower. sheesh. even this post is making me cranky.

i don't have cancer anymore so why am i completely unmotivated? shouldn't i be joyous? i feel that since i'm able to be mobile, i should have more to show for today.

i don't want to talk to anyone. i don't want to do anything.
sigh.

tomorrow should be better. friggin' monday.

the end of winter

so spring has sprung. i awoke to snow flurries and now the sun is trying to break through.

it's been over six weeks since my hysterectomy and i'm finally feeling that i've turned a corner. the pain is mostly gone. my hair is mostly growing. mostly gray. i'm able to start focusing on the world outside my own health issues again. for the most part.

i visited a dear friend of mine recently who is going through a terrible loss. other than warming up some food for her lunch, i didn't feel there was much i could do to help. the grief in the air was heavy and persistant. i wanted to lift the burden for her, but i couldn't. there she was, living her life as wife and mother when whammo -- heartbreak. that same day, i learned that another friend of mine gave birth for the first time. mother and son are doing well and are the picture of happiness and beauty.

i step back and look at what the day had brought. one mother in california struggling with the eternal "why?", the other in italy holding her firstborn. i think about either and i cry. life is confusing and beautiful and heartbreaking. it's a burden and a joy. i know now that it's easier to deal with my own mortality and illness than to see someone i love battle such deep sorrow.

sigh.
the sun has disappeared. it's snowing again.

i am not a mutant. i am a big girl.

i decided to have a genetic test done to find out if my cancer may have been caused by an alteration in my genes. since i'm younger than the average ovarian cancer patient and since there have been instances of cancer in members of my extended family, i assumed that the test would reveal some sort of wackiness in my genes.

today i received the results in the mail. even though my genetic counselor had called me a couple of weeks ago to tell me, it seemed different holding the piece of paper in my own hands. the result? "no mutation detected". that's exactly what the paper says. i was really surprised. i fully expected that darn cancer to be hereditary, but it turns out, i'm simply part of a very elite club. the odds are against a 42 year old without any genetic predisposition to be diagnosed with ovarian cancer, but look who beat those odds. so no mutation. i guess for me, the outcome is a moot point since i've already had the cancer, but the real winner in this scenario is my sister, and her two kids.

as a side note, i was on my feet today for three and half hours, a personal best lately. i went for a walk and did a few unnecessary errands just to get some fresh air and build my stamina. sheesh. i started out okay, but by the end, even old men shuffling along with canes were passing me by. that's alright. two nights ago, i took myself off the pain medication which is the longest i've gone without pharmaceutical assistance in the last four weeks, and today was the first day i put my socks on all by myself. i mean, since the surgery. i'm a big girl now.

ayumi-chan

many years ago, while working as a custom picture framer in berkeley, i met ayumi. we immediately clicked as we bonded over food, and soon I considered her my imouto -- my little sister. we worked together for only a year and then in 2001, i moved to new york. that was the last time we had seen each other.

we kept in touch online, but i still missed her very much. in the meantime, she and her husband, aaron, moved to portland, oregon. finally, after years of procrastinating, ej and i made it a priority, and after our recent holiday visit to the west coast, flew straight to portland to visit ayumi and aaron. she and i cried when we saw each other.

ayumi and i in their happy little home.



with aaron, ocho, and p-nut.



in their house, there is always something to look at.



at night, ej had vivid dreams in color.

close up on his dreams .





ayumi and aaron work together as artists under the name apak.



we really felt like we were on vacation.

this is the dog with the longest neck i've ever seen.



ayumi made a batch of blueberry pancakes.



oh, happy day!



life as a dog in their house is pretty darn good.

we eventually ventured out into the world. strangely, many of our adventures were related to food.





we visited a massive asian supermarket. right after i took this photo, an employee informed me that photos were prohibited. i guess they don't want anyone to steal their dragon idea.

so when i took this illegal photo of ayumi holding a notebook and some stationary that they designed that's sold at the store, we had to have ej and aaron be on the lookout. there were two other shops in portland where i saw their artwork being sold in different forms and that was exciting. i felt like i was hanging out with celebrities.



other stops were at the love counselor, which was...confusing.



and the waffle window where i got the warm chocolate-covered waffle i was craving.



just a little waffle action to fuel us.



hailing a cab? pointing the way? is it me, or does that statue have an unusually long finger?



we were tourists, so it was required that we stop at voodoo doughnut.



they're known for their unique doughnuts, such as texas-sized glazed doughnuts and cereal covered doughnuts.



the one i'd seen on tv was the maple bacon doughnut. i hear it's good, but i stuck with a traditional glazed. regular sized.



i enjoy neon.

perhaps my favorite part of our visit, was when ayumi made a traditional japanese one-pot dish called nabe. here are most of the ingredients.



this was in honor of my birthday and it was exactly what i wanted, good food shared with people i love.

i discovered that nabe is the perfect mid-winter meal. the clay pot is heated by a single burner that was brought out to the table. it was all very warm and comforting and all the flavors were outstanding.

this is from wikipedia: Eating together from a shared pot is considered as an important feature of nabemono; East Asian people believe that eating from one pot makes for closer relationships. The Japanese thus say, Nabe (w)o kakomu (鍋を囲む、"sitting around the pot"), implying that sharing nabemono will create warm relations between the diners who eat together from the shared pot.



the dogs knew they were missing out on something.



"delicious" doesn't even do it justice.



too much sake.



this was all followed by blueberry pie a la mode. i hope that aaron and ayumi realize what they've done. ej and i will be back next year for dinner on january 11th. and every year thereafter.

these are close-ups on a collaboration between apak and a furniture designer. this work was painted directly on a bench. it's called "coming home" and this shows only part of the whole work.





one of the things i love about ayumi and aaron is that they're creating the world in which they want to live. they both make their living as artists, they bought their home, they've created a studio upstairs where they can work, they have two adorable dogs, one of which can play a toy piano...it was really wonderful to be a part of their world.

it was going to be hard to leave, even though we'd only been there two full days.



before they dropped us off at the airport, we stopped for breakfast. of course we couldn't leave without one last meal.

it was yummy danish food.



the bonus was that we were able to meet up with a dear friend who had been a framer with us. i hadn't seen chris since 2001. lucky for us, she now lives in portland. she brought me a gift of a hat.



the lay-dees. yup, we can all cut glass, cut mats, and assemble moulding.



a skinny creature on the sidewalk outside the restaurant. apak found him.

and then it was time to fly away. on the plane, you could listen to music provided by the airline or, play games on the screen in front of you. ej played a trivia game against other passengers. he did very well.



there were quite a few snowy peaks as i looked out the plane window. the visit had been exactly what i needed.

sigh.

i sneezed

i'd been dreading it and have managed to stifle them for the past few weeks, but this morning i felt one coming on. i hugged my belly, and i sneezed.

i didn't explode. hurrah!

in an hour i'm getting on the subway for the first time in weeks. hopefully, i won't explode there either.

it's a big day for sandra.

it's like looking in a mirror

i've discovered that over that last two months, i've begun a small collection of photos taken with friends and family who have a hairstyle similar to mine. i simply had to share. (notice the matching color scheme of shirts in almost every photo...weird.)


in anaheim hills with my cousin, firefighter justin. at this point i was completely hairless. penciled in eyebrows, no eyelashes, i think even my nose hairs were missing.



in alameda with my dear friend, bryan. the hat i had on left an indentation across my forehead which makes it look like i'm wearing a bald cap from a costume shop.



in san francisco with my no-longer-long-lost-friend, franky. the faint suggestion of fuzz is beginning to make an appearance. i don't know why this photo makes me think of a couple of koalas hugging.



in williamsburg, brooklyn with astounding musician, harel. if i grew a beard and gave him glasses, we'd practically be twins.



in manhattan with my fabulous acupuncturist, josh. i hadn't quite caught up to him. hairwise. maybe that's why i have such a freaky look on my face.

taken today.
just me and my long, luxurious locks. the eyebrows are homegrown too. my hair reminds me of the guy on the tv show, Lost.


the guy from Lost.