Friday, November 11, 2005
November 2005 from livejournal
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Sick of being sick
Posted on 2005.11.02 at 11:40
Current Mood: inconsolable
Current Music: I'll fly away, Alison Krauss
I'm not too consolable today. I am just cranky and tired and really really sick of being sick.
My white blood cell counts are too low for chemo. They sent me a way this morning.
I'm on week 2 (or is it 3?) of a headache and cough and sore throat ride. Yippee and ouch.
I went to the hospital today to get my head examined (finally! someone had to do it...) - to see if I need antibiotics for the sinus infection. The doctor suspects a viral infection in my spinal fluid which is causing the grande headaches. No cure for that. Just let it run it's course - whatever THAT means.
DB is coming down from the city & I hope the electricity is on when she gets here. There has been enough chaos lately - halloween, lost power, all three kids home all week plus Brk (such an angel these days) & Aa (who is super stressed out from work and bringing it home) and my not-so-chipper self. Add DB and it's a full house with only one bathroom. Thank goodness for all the love we have for each other. Pk is still putting on shows to make me laugh and has taken to writing notes (now that his spelling is so improved) - and I am still managing to (mostly) keep my humor while doing the nitty gritty parenting stuff - personal hygene and organization skills and chores and homework and nutrition. I lose it sometimes though. I hate that. You know - raising my voice or being short tempered. it's so much better when I can be kind - although it doesn't get Pk's attention and after asking the same question or saying the same thing 5 times, I raise my voice and he notices. Still - yuck.
Occassionally I wonder what it would be like to be in P's position - the superhero parent who doesn't spend more than a few days in a six month period and gets to be the one who allows Pk all the things that I won't allow on a regular basis - violent games and lax homework and fast food. What would that be like? A phone call each week and the occassional post card or care package. ??? Empty, I suppose. For me anyway. I guess I have to remember that when the nitty gritty seems a little much.
Little things like planning a party and getting Pk to school early and running errands seems to loom large over my head.
I am occassionally overwhelmed.
Things that keep me sane lately: cocoa, tiny flowers of any color, views of mountains, morning snuggles with Pk, sunshine, Netflix, DB's calm nature, feather pillows and cotton sheets,
Thank goodness for the support of friends and family- you know who you are. I could not do this without you.
web movie star
Posted on 2005.11.03 at 09:19
Current Mood: tired
Current Music: Fame
Brk finished her filmmaking assignment- she made a 4 minute movie about me and IVIG - it's really good. If you want to see it, let me know and I'll email it to you. It's on Quicktime so it's really easy. I wish I could just attach it here but
So there was no power last night but DB made it a special night - she made a fire and cooked dinner in the woodstove and we all played charades by candlelight. I was still a little too cranky to be much fun (something about being so tired and having a hard time breathing) but DB and Pk had a good ol' time.
Today is a quilt and rest day. The fire is roaring and the autumn sun is shining.
Cancer humor
Posted on 2005.11.07 at 09:59
Current Mood: amused
Current Music: We're All Gonna Die, Kasey Chambers
I just wrote to my uncle who has advanced lung cancer. It must be strange for my father to have both his brother and his daughter out here struggling to breathe. My whole family, it seems, does better when humor is involved though. So I sent my uncle these gems (Hey, G - can you read them to Daddy over the phone?):
OLD SCOTS never die, but they can be kilt!
Doctor: "I've got very bad news - you've got cancer and Alzheimer's"
Patient: "Well, at least I don't have cancer"
-------
After being diagnosed with lung cancer, my husband and I went to his hometown for a family reunion trip that had been planned for several months. All the family knew I had been diagnosed and was scheduled to have surgery upon my return home. They all tended to avoid the subject, but took much more time hugging me than usual.
While we were eating supper one night, my mother-in-law commented on how well I was eating. I told her that it was only natural, now that I was eating for two . . . me and my fast growing tumor.
-------
I’m not afraid to die, I just don’t want to be there when
it happens. - Woody Allen
Doctor: The tests show that your cancer is advanced. You have six months to live.
Patient: But, doc, I can't pay off my medical bills in six months.
Doctor: In that case, you have six months more.
© Copyright 1999, Syd Love
Humor is the absence of terror, and terror the absence of
humor. - Lord Richard Buckley
“Life does not cease to be funny
when people die any more than it ceases to be serious when
people laugh.” - George Bernard Shaw
“Life is pleasant. Death is peaceful. It’s
the transition that’s troublesome.” - Isaac Asimov
and my personal favorite:
Question: "What do you call a young woman who keeps getting lymphoma over and over again?"
Answer: "A lymphomaniac."
--------
Pk is home with poison oak (more of a mental health day than anything else) and DB is crazy busy at work and preparing for the party. I'm still well enough to haul wood and aside from coughing fits that make me vomit - I'm doing really well. Hopefully, my white cell counts will be high enough to get coolaid chemo on Wednesday. and hopefully chemo won't knock me down for the birthday celebrations.
I know you mean well...
Posted on 2005.11.16 at 11:06
Current Mood: defensive
To begin:
It is important that I say (again) that I deeply appreciate your care and your intentions. I think you have presented and challenged me with suggestions that are not off the deep end. You have correctly seen my resistance and I admit that it is more than I care to have. I love you and feel very loved by you.
To continue:
I need to get out the defensive stuff - I need to get these things off my chest so they don't sit there. I will most likely ramble.
Please do not forget that I was in a chemo clinic for multiple hundreds of hours - and I have witnessed more than you ever could have when it comes to cancer.
My resistance to suggestions stems partly from what I have witnessed. It may be that I am jaded or overloaded with information. But I have known many different kinds of people (different ages, genders, races, religons...) with cancer and have listened over long periods of time to their journeys. Not only in the clinic but also in Women Care's support groups where the most alternative therapies are spoken of. Also I have known thousands of people outside of the cancer realm with all kinds of experiences with disease. I have known people that have had healthy, cell-growth producing vegetarian diets and they are now dead. I have witnessed acupuncture treatment work and have witnessed it not work for nausea, vommitting, headaches, chills, fever, pain and neuropathy. I have seen people who rely on prayer - those who make it praise god, those who don't have family say that it was god's will. I have also seen people with my approach (kick ass cancer fighter) go down too. And some have made it.
What I do now may not be working completely. I may need change - in fact, I surely know that I DO need change. But I have to come to it on my own because that's the kind of gal I am. Stubborn and defensive and overloaded and scared and jaded and in some amount of denial. I also feel a bit righteous because I must be doing something right in my regiment of lattes, connection, laughter, massage, sleep and fierce, kick-ass attitude. I'm still here.
People have suggested many things to me over the course of my illness. Some people mention things in passing as in, "Hey, have you heard of or tried xxxx?" but some people are genuinely and adamantly sure that their solution will work for me. They have been converted to believing in it for some reason. Sometimes their motivation is goodwill, sometimes it is monetary (or as a result of someone else's selling techniques.) Sometimes the suggestion is based on heresay but the most strongly opinionated have had some sort of personal experience / conversion to the idea suggested. There is a lot of pressure on me to do these things. Some of them seem wild to me, some seem sensible. But each one of the suggestions listed below is backed by a person who truly believes that their suggestion will help so when I hear your suggestions, they get lumped in with everyone else's because - really - who is to say? Is any person more or less right than another?
a partial list of things that have actually been suggested to me for my healing
energy / eastern / body work, including but not limited to:
reiki
Magnetic Resonance or Bio-resonance
chi gong, Qigong
acupuncture
accupressure
traditional chiropractic
network chiropractic
yoga
colonic flushing / irrigation
special diets, including but not limited to:
raw food diet
flax seed oil diet
diet based on blood type
yeast free diet
dairy free diet
meat free diet
sugar free diet
shark cartilage
vita enhanced water
magnetically charged water
8 glasses of water a day
mega doses of Vitamin C
mega doses of Magnesium
vitamin supplements (there are dozens of preferences)
herbal remedies including, but not limited to:
Aveloz extract (from Brazil)
ecchinaccia tea
aloe vera extract
apricot seed extract
enzyme therapies
salt water
wheatgrass
garlic/cayenne mixture
propolis drops
Chinese herbs
miso soup
raw garlic
bluegreen algae
marijuana
Spiritual / self-help guidence including, but not limited to:
Sri Nisagadatta Maharaj
Ashanabi shaman
angels
Catholic prayer lists
Pagan rituals of renewal and release
chanting nam myoho renge kyo
Jesus
the Pope - using holy water from the Vatican
chanelled guidence from Seth
Shamanic healer
Native American healer
Pliedians- aliens from the Pliedies, or Seven Sisters constellation
Liberty Experience
Avatar (Enlightened Planetary Civilization)
Sathya Sai Baba - using ashes from the ashram on my chakras
and who knows what I have forgotten? When I googled "herbal remedy cancer", for example, there were over 3 million sites listed.
"diet cancer" gave me over 24 million and "diet cancer cure" over 13 million
I also get pretty defensive when I hear someone suggest to me what they cannot do themselves. So it goes both ways - I hear people praise xxxx and see that -even when they manage to hold to the suggestion themselves (which doesn't seem to last for a long time if it happens at all)- they are no more healthy or happy than the average person. And I hear people condemn xxxx when I see that it isn't harming me all that much.
To conclude for the moment:
I do need to change some things. I am not sure how but am confident that I must figure out a way to drink more water, remember to take vitamins and to eat (relatively) well on a regular basis. I will also continue to take the "Wellness Solution" that you have offered even though I doubt it's effectiveness. But in my way of thinking, if something is going to work, it will work. I do not need to believe in it for it to work. Otherwise, all I have to do is believe in myself. Which is mostly what I do anyway.
I will continue to chant when I am moved to and to write when I am moved to and to pray in my own way.
I appreciate (although I may not show it) when you (or anybody) reminds me to drink water and take vitamins. I appreciate specific suggestions for easy food solutions (how about slicing the beets that are in the 'fridge with the spinach in the crisper to make a salad? Can you heat up the soup and have it with the olive bread?) I appreciate being told what to buy at the grocery store.
I will continue to refrain from drinking and doing drugs, refrain from smoking, refrain from staying up too late. I will continue to eat small portions of food and limit my sugar intake. I will continue to use the minimum western medication as I can.
And now that I have explained as much of this as I can, I ask your blessing. I don't need it but I want it. I want peace between us - not the constant struggle always to get me to change. I want unconditional love and I beg your patience in me as I am on this journey. My spirit cannot withstand the constant message that I am not good enough, that if I only did xxx, I would be better. That it is all my fault.
You may be more holy than me. You may have the way and the truth and the light. But, again, I must ask you to be a power of example. When I see something truly change someone's life for the better, I really do try it. And if it works for me, I stick with it. Like not drinking. But I need to make those decisions. And if you condemn me for my decisions, please keep the condemnation to yourself because that alone could kill me.
Thanks for reading it all.
What a birthday!
May I just say right here and right now that Ms. Danielle Bianca Hope is the all-time BEST ever party planner? With love and devotion and what I can only imagine would be months of planning, she pulled off the best birthday weekend I could ever dream of having. Luckily, she had the help of many key people - beloved friends and family members who all worked together to create something magic for me.
Pk, Brk and I headed up to SF on Thursday afternoon. It had been a rough day for me. Chemo was the day before and I was pretty tired from the headaches and late night coughing fits. Brk let Pk and I sleep in unusual afternoon naps while she worked out (she is often seen doing some kind of push-up or sit-up or arm reps just while she is talking - she is awe inspiring in so many simple ways that she would never think she is.) Brk also drove to the city - in lots of traffic - which was quite a gift. It's not her favorite thing to do - nor mine.
When we arrived at DB's apartment, Brk took a mental health walk. When she returned, DB & Brk prepared food for Saturday in the kitchen. While they chatted and chopped and baked and blended, Pk and I watched "Little House on the Prairie" in the living room. We snuggled and relaxed and everyone seemed to enjoy the evening. As I put Parker to sleep that night, the bedtime story started, "40 years ago, at exactly this time, Nanna Jo was putting the baby powder and the lotion on the changing table when she felt her first contractions..." Although Pk has heard the story of his own birth dozens of times, he had never heard the story of mine.
It took a week to recover from my 40th birthday
On Friday morning, my father called early to wish me a happy birthday. I assured him that it was OK that he inadvertantly inturrupted an intimate moment of DB and me - I think we were giggling in the background. He was in a hotel room in Virginia, waiting for orders to get on a ship. We had a really good, long conversation - a priceless gift to any daughter who adores her father as much as I do mine. And he even filled in some of the details that I left out of the story for Pk the night before. I didn't realize that in 1965, his ship was in Boston on the night that I was born in Newport and that he had to make the ride down with a shipmate in the wee hours of the morning. He got there a half hour after I was born and took many of the parenting duties in those first couplle weeks because my mother was ill. I think that's why we are so close.
Both my father and his partner (who is in Philidelphia) both checked in that day to wish me well on my adventures. They generously made it possible to have me run off a cliff! The plan was to go with a tandem hang gliding flight instructor off of Mount Tam near the Golden Gate Bridge and soar on the wind to Stinson Beach. Although I really didn't dare to admit it to anyone (because everyone went through such trouble to plan it and make it possible) I was very nervous about it. I wasn't feally very strong. Hang gliding is definately high up on my list of things to do, but I wasn't sure that I was totally up for it. So when Wally the instructor called to say that there was just too much fog, I quietly breathed a sigh of relief. Something for another day, I thought.
With those plans changed, DB and I were free to roam the city with my sister (who flew in from Maine with her partner!) and Brk and Pk. We drove through lots of the city - touring Russian Hill and Union Sq. and Chinatown and the Marina and the Mission. Everywhere we went, we saw neighborhoods with their own flavors. We saw beautiful murals and architecture and classic steep hill scenes. We chatted and observed until we were all pretty hungry. We landed in the North Beach section where I had never been. It's the Italian part of town and mangia! mangia! mangia! was first on our list. Oh! my! goodness! Dani treated us all to such delicious food! Our Italian waiter was very kind to take my special order (I am so like Sally in "When Harry Met Sally" when it comes to ordering at resteraunts!) of a modified Penne Putinesca. All I really wanted was pasta with olives and tomatoes. And that's what I got! Yummy!
After dinner, we wandered through Italian stores - the deli with dozens of different kinds of dried sausage hanging from the ceiling, the shoe maker with rows and rows of shoes on the drying racks where years of glue was stuck to the wood, the colorful Italian pottery shop where platters and vases and statues lined every square inch of the room. There were outdoor cafes heated by gas flame and cutlery shops where DB and Pk appreciated the merits of a sharp blade. Finally, we made our way to Stella's bakery where my sister and her partner M treated us to lattes and the finest Italian pasteries. We shared taramisu and canoli and relaxed conversation. By the time we left, the sun was setting on the brick buidings, leaving the resteraunts' warm glow spilling onto the sidewalks.
Brk - who likes to run - ran from North Beach back to DB's. We dropped my sister and M at their hotel and headed home. What a lovely day. It was funny that people wanted to give me their presents and I kept asking to wait. I like to space things out so that I can enjoy all my blessings throughout the day. Pk surprised me with a beautiful leather journal with goldleaf pages that he decorated himself. Brk gave me a hand made redwood picture frame filled with a photo of Pk and DB at the Santa Cruz Boardwalk. I got a wonderful message with my youngest sister singing to me from London. We tried to actually connect in person but it didn't work out. It was so good just to hear her beautiful voice though. I miss her and look forward to hearing what is going on in her new law school situation in the UK.
The day was full of surprise messages actually. My dear CM friend called me from Rome, Italy and B called from NY. A whole bundh of people TOTALLY blew me away by sending video messages of birthday wishes. DB put that gem together on the sly and was going to premiere the videos at the party the next day but brought them out at the perfect moment. It was sooooo cool to get messages from all over - from women I love. And they all had their own personality - T in a field of flowers in Austrailia, P & H goofing around and doing tricks with their cutie pie dog Tucker and Pk's friend Jk singing from behind his skateboard. The beautiful sight of M & D (who can REALLY sing!) and the unforgettable image of Mcy as a 70s porn star! Frc was sideways in British Columbia and P.D. danced her magic in silence with signs to wish me well. I was just floored. People are so cool. I decided that they would all be there at the party the next day. I would make signs and name each one of them and line the hallway with their names. Everyone who called or left a message for me would come to the party!
With Pk all squeaky clean and wrapped in covers on the couch, we gave him the iPod so that he could listen to his favorite tunes on the way to dreamland. DB and I snuggled up to begin reading Isabel Miller's "Patience & Sarah" to each other. We love the story so much that it was hard to put it down but it had been a long day and we had another one ahead of us. I smiled as I fell asleep, thinking of all the people in my life, tucked in DB's arms. What a lovely, relaxing birthday.
The day of the party started early. There was so much to do! What was best about the preparations was that DB and I both like to throw a party and are both good at different things. I worked on ambiance, signage and furniture placement. I lined the curved stairwell with the names of friends and my friend J Mc later brought professional banners that ran all the way down the hall (a 10 foot Happy 40th Birthday, V! banner and a 6 foot banner that read "Laissez Les Bon Temps Roulez!" - which translates "Let the Good Times Roll!" for the entry hall.) I made little signs for the bathroom that had "N'Awlins Talk" - words that are popular in New Orleans and how they are translated. I was hoping for some gris-gris and a lot of gumbo-ya-ya! While I was lining up dozens of candles, DB and Brk worked on food and furniture hauling! They cleared out the bed to the garage in order to fit the poker table which was delivered early. We moved her Buddist altar from the center of the living room to the corner in order to fit the blackjack table.
Yet another side story in this event is the meeting of my friend SK. We met in Boston in 1984 or 85. We lost contact and didn't see each other after 1987 until a very unlikely meeting at a Gay Pride in Santa Cruz in 1998 while P and I were pushing baby Pk in a stroller. SK too had settled on the West Coast and gave me her catering business card which somehow fell out of the diaper bag so I was not able to contact her I didn't see her until another freak meeting 6 years later, when, by request, we took DB's mother to a Church of Religious Science service in San Jose. And there was SK! Taking the collection! I almost disrupted the service to go hug her but was good and waited til the end. She gave me her contact number on a business card again. This time I promptly entered it into my cell phone - which I lost shortly thereafter. A few months later, in the enormous urban throng of LGBTQO-zoids that populate San Francisco Pride, we met again! This time, her Beloved Z was with her and I programmed her number right into the phone while we stood in the center of an intersection at City Hall Plaza. Just after that, I went to the east coast so I knew our meeting again would be postponed. Unfortunately, I lost THAT phone in Connecticut. Fortunately, after I unpacked everything back on the west coast, I found that I had written the number down in an address book So when I called to tell her about the party, SK said that she would do whatever she could to help. DB took her up on the offer and the morning of the party found SK and Beloved Z hauling chafing dishes and sterno cans and a salad stand and linens up to the apartment. WOW!! And THEN they went off so that SK could make the most extravagant Jumbalaya with shrimp and sausage and I don't know what all. It was soooo good. But I am getting ahead of myself.
While DB and Brk and I worked steadily, my sister and M took Pk to Alcatraz. They spent the whole day playing in the city and got back just in time to get Pk dressed in his costume. Oh! He looked so sharp! He wore a silver grey double breasted suit with his hair slicked to the side and a black gangster hat raked toward the back. I know that I am his mother and it is cliche to say that I think he is handsome but - really! If you could have seen him!
The party itself was, if I had to choose one word, glamourous. The candlelight glittered off the 15 foot ceilings and the Victorian chandeliers were dimmed perfectly. The guests ranged from long-time festival friends to high school friends to DB's Wildside friends to teenagers to fellow mothers. Many people wore costumes - zoot suits and flapper dresses, hobos just off the train, a distressed stockbroker and one couple with authentic everything right down to the 1932 tuxedo! Even the kids had costumes! There were a couple interesting interpretations like Brk was from the year 3030 and went all futuristic, our friend N/S came as a pre-Kinsey sex-pert doctor (she has the white coat from studying medicine in RL), and there was a sweet, older fag who was dressed as a paperboy, shouting Extra! Extra! (his stack of newspapers shouted BUSH RESIGNS!!) There were feather boas and maribou too - the trannie boyz looked great in those!
My sister's high school buddy stood tirelessly next to the pink Kitchenaid blender and made mixed drinks for people - ginger ale and juices with a wedge of lime and everybody - everybody - talked about how good the food was. It looked fabulous but tasted even better! DB donated everything. She is amazing. A green salad with cranberries and nuts and tangy cheeses, beautiful grilled vegetables, creamy pumpkin soup, a stunning platter of artichokes and an array of specialty breads were set out buffet style. The main dishes of pulled pork (smoked for 18 hours over an open flame) with killer barbeque sauce and the Jumbalaya (donated by SK and Beloved Z) sent people going back repeatedly. Somehow they left room for the cookie platter full of goodies including Brk's homemade chocolate chip cookies. The kids had pizza and seemed happy with the Care Bear fruit candy too.
Amidst all the chatter, people actually did play cards too! The dealers were friendly and knowledgable - they kept the hands flowing fast and helped people understand the rules of Texas Hold "Em and BlackJack. Pk, as we found out, is a shark! He got Blackjack on his first hand and stood there to win the next seven hands in a row! He was working for the pink chip! There was no money (gambling isn't legal, dontcha know?) changing hands. People got fun money at the door (where we were raising money for NOLA gals) and played out what they had. It was hysterical to see the pierced faces next to the kids next to the costumed hobos - all sitting around the poker table! DB's favorite moment was seeing my sister's boyfriend M (born and raised in RI, now living in Maine) sitting in a circle of SF gay guys. They were all talking food and having a good time! Another favorite moment was when K & L did the Charleston (at least I think it was the Charleston!) in the middle of the living room. They were perfect! There was jazz all night in every room. We rigged up the computers to play Dixieland and Big Band and Swing and classics of Scott Joplin and Ella Fitzgerald and Count Basie and Duke Ellington. There were some Assylum Street Spankers and Harry Connick Jr mixed in too.
At some point there was a cake. And what a cake! It was a work of art with shaved chocolate and rasberry filling and delicate powdered sugar. There was a candle for each decade and I made sure to be grateful for all the wishes I have had come true before I wished for more! After a toast and a speech, it was back to Texas Hold 'Em. And then, at the end of the night, we had a raffle (what party would be complete without a raffle?!) We had prizes donated from a women's spa and from WWTMC and Good Vibrations (thanks, all!) DB's work donated a couple of gift certificates and we had Jumbo poker playing cards that Pk and his friend took home. It was sad to say goodnight to friends (some drove from Chico and Santa Cruz and T came from and back to Monterey!) but it seemed smiles all around. Since DB's apartment is next to the Castro, some people went to the movies, some went out dancing. Many went home because it had already been a splendid night!
I know that after we got Pk to settle down (he was so excited about his pink chip and his poker deck and still had quite a bit of sugar left in him) I couldn't sleep either! DB and I just layed awake in the dark remembering this detail and that. We felt sad for our friends who got stuck and had to turn around on the Bay Bridge where there was an accident. We raved at our ability to combine forces. We were so grateful that people came and had a good time. We raised a little money and had a lot of fun. It was a success!
The next day, I layed low. I slept a little and helped in the clean up effort. I spent some good quality one on one time with Pk in the city and then Brk took Pk back to the mountain for school. On Monday, DB went to work and I slept all morning. That is practically unheard of for me. But my body needed it. I was TIRED!
On Monday afternoon, DB got off of work early so that we could formalize legal paperwork that we've been wanting to do. It's funny about all the stages of our bonds - a spoken promise, a ring, a piece of paper. We won't be "married" as in have the big party that announces our intentions to the world until February 2007. We'll have a family ceremony this February just as a promise to be the best partners to each other and the best mother and step-butch to Pk. But this was just one more phase in all of that. We decided that we like not doing things the traditional way (I've already tried THAT!) and are grateful to have the chance to love each other.
I am in my living room on the mountain looking at the autumnal flowers send by dear friends in the UK and I have, just this minute, finished with my second of three IVIG treatments for the month (hooray!) and I think I can call it a day. Tomorrow, we bring Pk to Harry Potter and Saturday, we get to sail in Santa Cruz harbor with a friend at the helm. Sunday it's up to SF after church and Monday will see Pk flying alone for the first time. He is going to P's mother's house for Thanksgiving and can hardly wait to see his dad. It's been a while. I feel full and blessed.
Thanks for reading it all....
Slideshow!
Posted protected on 2005.11.21 at 14:53
Current Mood: grateful
Current Music: When the Saints Come Marching In
Hi, I put together the pictures I took into a little slide show here.
http://andreafumagalli.com/party.wmv
If you have more pictures I can add send them to me at dbhope@gmail.com Thanks to all you that contributed to the fundraiser and V's birthday! Love, Dani
Thanksgiving
Posted on 2005.11.23 at 09:30
Current Mood: grateful
Current Music: Kind and Generous, Natalie Merchant
DB and I are spending Thanksgiving at our friends' house on Bernal Hill here in SF. It'll be their family of four, their housemate and her partner, Lynee and her mother and us. It should be a nice day and if Rn is lucky - the surf will be up and we'll take the kids while she surfs in the morning!
I've been thinking a lot about Thanksgiving and instead of writing about it here, I've decided to post a letter sent to a friend in Texas. Here is what I wrote:
And a happy thanksgiving to you all too!
Yes - I certainly have plenty to be grateful for. Thanksgivings are benchmarks for my health since I was diagnosed so close to this holiday 3 years ago. That first year, 2002, I was unable to eat anything but a bit of mushed up pumpkin pie with a lot of whipped cream due to the complete erosion of the skin in my mouth. The second year, I don't think I could eat anything at all. But that was only partly to do with lesions and more to do with nausea and continuous vomitting. In 2004, I had all but lost my sight completely but I was able to have whipped potatoes and yams and even a little turkey and stuffing. It was heaven! No mouthful of food was taken for granted. This year, it looks like I might be back to mashed pie with whipped cream since my mouth is currently full of lesions. I haven't eaten too many solids this week. But maybe things will improve in the next day? We never know.
I have to say that I am grateful for having the chance to have more revealed.
It is not easy to remain chipper and kind at this level of pain. It is easy to focus on what hurts and what I can't have, what I can't do. I lose my temper and have to bite my tongue (which is already bloody enough!!) Although I miss Pk terribly (he is visiting P on the east coast), I am grateful that he is missing out on me being in this kind of quivering pain.
I've been thinking that it is fortunate that there is a holiday that encourages taking time to remember all the goodness. I really do have so much. I really can do so much. I have people who love me. I have the honor of raising a child. I have support and care in my daily life. I have a beautiful, warm place to live and I can see! I can walk up stairs and hills. I can quilt and write and be softened by music.
Giving thanks is good for my soul.
Brk has decided to nourish her soul by going on a week-long solo backpacking trip in the Sierras. She brought along a pumpkin spice Cliff Bar for a treat. She really does live a very simple life and that has enabled the money that you send to go a long way. She bikes or walks or hitchhikes everywhere. Sometimes she takes public transportation. She lives outside in a tree or in the woods and pays no rent. She eats simple, vegetarian food and wears her very small (but functional) wardrobe repeatedly. She is leading a full, rich life outside of caring for Pk (which is full and rich in it's own ways!) She is taking a film class at a local college, learning how to make redwood picture frames at the saw mill nearby, often spending time in the city at DB's apartment where she climbs the fire escape and sleeps on the roof, never inside. She has friends from when she lived here before and a solid base of community in addition to our family, of which she is a full-fledged member.
I think we are doing OK for a few weeks more on the money that you've sent. We are really trying to stretch it. I haven't felt like I am compromising my health though. She always takes Pk when I am in chemo or getting IVIG. She plays with him when I am sick on the couch and cannot. She is there when I need her. And we make sure that she gets enough time to herself too. It's so much to ask of a young person to give up her life of traveling in order to care for Pk. Especially since I never know when or how sick I am going to be. We always give her Monday and Wednesday nights and every weekend off - meaning that DB can cover those times if I need help. That way she can make plans and not be on call. She has lots of other free time too because I only call her when I need her. But she has to stick close by to be on call (especially since she doesn't have a car.) We seem to all be making it work out and we are all grateful to you and Pla for making that possible. Thank you so much.
I hope you get the rest you need to rejuvinate yourselves. Parenting a one year old is a heck of a lot of work! Go, baby, go!
Much love to all - V
Genuine Hunger and Gracious Gratitude
Posted on 2005.11.25 at 10:50
Current Mood: quiet
Current Music: I will not take these things 4 granted, Toad the Wt Sproket
Not that this will be a trend, but I wrote a response letter this morning to my old college buddy from Massachusettes. I thought I would post what I wrote:
Hey Rob - I have to say that I rarely ever read forwards. But it was from you and it's the lazy Friday after Thanksgiving so I figured, what the heck? It was very informative. It's funny that I didn't know some of those because I went to Stafford Upon Avon (outside of London) years back and had a tour guide that was full of stories - including the canopy bed . She also told about "sleep tight" (using a key to tighten the ropes on a bed) and "spruce up" for when the dirt (or slate) floor was so full of animal droppings that spruce boughs had to be added for olfactory sanity. Then, of course, there was "Don't let the bed bugs bite" (an obvious reference to the hazards of thatched roofs.)
So how the heck are you, my old friend? We're 40 - I can call you old, can't I?
I just turned 40 actually. I had a stunning party. It's not like me these days to make a fuss. I am still battling cancer on a daily basis. I am still clean and sober and what mother has the time to plan a big ordeal? But the situation for lesbians in New Orleans is dire (well, it's hard for so many but the federal government won't recognize the dykes as families.) So I wanted to raise money and having people come for a big 40th to-do seemed to make sense. It worked. People dressed up in costumes from the 1920s and 30s and there was dixieland, big band and original New Orleans jazz in every room. We had blackjack and poker dealers who kept things rolling and the food was outrageous. My partner (her name is DB) LOVES food - she loves to cook it and present it and definately has a talent. So it was beautiful southern fare. All in all it had the glamour of a Mardi Gras Fete. AND we raised some good money for a good cause.
I was wiped out for a week afterward though. Chemo is NOT for sissies, as I am sure you know. It's been a heck of a lot easier to deal with it all with my new love and with Pk being 8 and a half. I mean 8 has it's challenges, of course, but he can do so much more now than when I first got diagnosed. And, although the constant threat of my impending death is always with us, he is more used to it and doesn't have the nightmares, etc. that he used to. We are a pretty decent team. And I am in really great shape overall. I am withstanding the chemo and my pooled blood product that keeps my skin intact (IVIG) with minimal side effects. I get a CT scan in December to see if the cancer is receding from my lungs or my abdomen. And if, on the off-chance, it has spread, I can always look into an autologous bone marrow transplant. There are options.
DB and I have had a few child-less days here in San Francisco because Pk went to the east coast to be with P (I told you that P/WW/my ex is now a man, right?) That is good for them because Pk hardly gets to see P. And it was good for DB and I because we could finalize some legal paperwork that we needed to in order for DB to make medical decisions should I ever need that. We decided to formalize it all at City Hall which is a very grande Victorian building with enormous sweeping stairs and gorgeous gold leaf lighting fixtures and an ornate rotunda, the largest in the country. Quite a sight. But, alas, we needed to walk a few blocks, they said, to the State Building instead.
We went to the 14th floor only to find out that if we mailed our form in, it was less money than if we paid right there. And that for domestic partnerships they didn't take cash or credit cards. Only checks or money orders. Obviously, gay people cannot be trusted with plastic! So, not giving up, we left the state building, went to the bank (who carries a checkbook anymore?) and came back up to the 14th floor with our money order. There was a very nice view up there so it was not surprising that Govenor Arnold Scwarzenagger had his office right there, next to the Secretary of State's office.
While we waited for our official paperwork to be officially processed, we decided to stroll in to see if Arnold was in. We were not surprised, it being the day before Thanksgiving, that he wasn't there. But we were VERY surprised to find his office open, with no one there. We seized the opportunity, being the rebels that we are, to make out on his conference table (I wonder if we were on security camera? oh well!) and to sit in front of the life-size poster of Arnold and Nelson Mandela to write a letter. Maybe it was the floor to ceiling flags that got us in a patriotic mood. Maybe it was the framed picture of he and Maria that got us in the generous mood of lovers. But whatever possessed us, we wrote a letter to him. We thanked him for the opportunity to be recognized as a family in the state of California. We told him how it broke out hearts to know that other same-sex families in other states didn't have any equality in their partnerships and that we just knew he would champion justice. We left it for him to find when he returns from his humble Thanksgiving, wherever THAT was.
We came home and celebrated by making a turkey and my beloved mother's famous cranberry orange relish and many pumpkin pies that night. The next day, on Thanksgiving itself, we took what had made plus leftover food (that had been frozen) and supplies from my birthday party, and we made an assembly line. We fixed many plates with turkey and cranberry sandwhiches and pumpkin pie and little applejuice in boxes. We wrapped them in cellophane and loaded them onto deep trays and hit the streets of San Fransisco.
We left plates just outside the dumpster encampment across from DB's apartment, in case the family was still asleep (at that point, it was still pretty early.) Then we met Domonique and Enrique, who were having an impromptu "yard" sale in a parking lot, trying to raise money from other's trash. They were delighted with dinner and even more so when we offered whipped cream for the pie! We met Shirley who was so wrinkled and so brown from dirt. She showed me the contents of her shopping cart and told me that she used to cook all the time but doesn't anymore. She hadn't eaten anything at all that day and gladly recieved our offer while we chatted. She had beautiful Irish eyes and a beautiful smile. There was a young black woman carrying 8 garbage bags full of recycling to the redemtion center and we met a lot of people who had set up camp in Dolores Park, taking advantage of the nice weather. A young woman in leatherette pants walked up to us quietly. "Do you have any left?" "Sure!", we said. She gave a half smile from under her long hair and wished us a happy thanksgiving. And the last plate went to a man in the Castro who had given up on the idea of tasting turkey for Thanksgiving. He didn't get to the food line on time and so had given up. He talked of his family, far away, and of how grateful he was for a home-cooked meal. It was hard to just listen respectfully and not cry. Well, we did cry, but only when we were back in the car together. We could have fed so many more people. We could have handed out plates all day long and still not reached everyone who was hungry. We could probably do that every day and STILL no reach everyone. But we did one little bit and that felt good.
It's funny. I was ready for the staggering, over emotional ramblings of drunk men who slur "God bless you" and I was ready for the mentally ill who are forced onto the streets with their carts. I was ready for speed freaks who would refuse food (we did meet one woman who fit that description although she was pretty mellow all in all.) I don't think I was ready for sober people to look me straight in the eye and shake my hand. I didn't know how generous people would be with their stories. And I naivley did not know how many people fall through all the cracks. I thought that there would be plenty of food at local churches and shelters. But I was wrong. The people we met were full of quiet digity, genuine hunger and gracious gratitude.
Well - I have certainly rambled on more than I anticpated (what's new, eh?) I would love to know how you are, how your family is. And although DB and I are currently looking for a place to live, we go between her apartment in the city and my home in the mountains of Los Gatos. I'll let you know when we get a new address. Meanwhile, the other details on how to reach me are below.
Take care, Rob. And thanks for the forward.
Big love, V
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Sick of being sick
Posted on 2005.11.02 at 11:40
Current Mood: inconsolable
Current Music: I'll fly away, Alison Krauss
I'm not too consolable today. I am just cranky and tired and really really sick of being sick.
My white blood cell counts are too low for chemo. They sent me a way this morning.
I'm on week 2 (or is it 3?) of a headache and cough and sore throat ride. Yippee and ouch.
I went to the hospital today to get my head examined (finally! someone had to do it...) - to see if I need antibiotics for the sinus infection. The doctor suspects a viral infection in my spinal fluid which is causing the grande headaches. No cure for that. Just let it run it's course - whatever THAT means.
DB is coming down from the city & I hope the electricity is on when she gets here. There has been enough chaos lately - halloween, lost power, all three kids home all week plus Brk (such an angel these days) & Aa (who is super stressed out from work and bringing it home) and my not-so-chipper self. Add DB and it's a full house with only one bathroom. Thank goodness for all the love we have for each other. Pk is still putting on shows to make me laugh and has taken to writing notes (now that his spelling is so improved) - and I am still managing to (mostly) keep my humor while doing the nitty gritty parenting stuff - personal hygene and organization skills and chores and homework and nutrition. I lose it sometimes though. I hate that. You know - raising my voice or being short tempered. it's so much better when I can be kind - although it doesn't get Pk's attention and after asking the same question or saying the same thing 5 times, I raise my voice and he notices. Still - yuck.
Occassionally I wonder what it would be like to be in P's position - the superhero parent who doesn't spend more than a few days in a six month period and gets to be the one who allows Pk all the things that I won't allow on a regular basis - violent games and lax homework and fast food. What would that be like? A phone call each week and the occassional post card or care package. ??? Empty, I suppose. For me anyway. I guess I have to remember that when the nitty gritty seems a little much.
Little things like planning a party and getting Pk to school early and running errands seems to loom large over my head.
I am occassionally overwhelmed.
Things that keep me sane lately: cocoa, tiny flowers of any color, views of mountains, morning snuggles with Pk, sunshine, Netflix, DB's calm nature, feather pillows and cotton sheets,
Thank goodness for the support of friends and family- you know who you are. I could not do this without you.
web movie star
Posted on 2005.11.03 at 09:19
Current Mood: tired
Current Music: Fame
Brk finished her filmmaking assignment- she made a 4 minute movie about me and IVIG - it's really good. If you want to see it, let me know and I'll email it to you. It's on Quicktime so it's really easy. I wish I could just attach it here but
So there was no power last night but DB made it a special night - she made a fire and cooked dinner in the woodstove and we all played charades by candlelight. I was still a little too cranky to be much fun (something about being so tired and having a hard time breathing) but DB and Pk had a good ol' time.
Today is a quilt and rest day. The fire is roaring and the autumn sun is shining.
Cancer humor
Posted on 2005.11.07 at 09:59
Current Mood: amused
Current Music: We're All Gonna Die, Kasey Chambers
I just wrote to my uncle who has advanced lung cancer. It must be strange for my father to have both his brother and his daughter out here struggling to breathe. My whole family, it seems, does better when humor is involved though. So I sent my uncle these gems (Hey, G - can you read them to Daddy over the phone?):
OLD SCOTS never die, but they can be kilt!
Doctor: "I've got very bad news - you've got cancer and Alzheimer's"
Patient: "Well, at least I don't have cancer"
-------
After being diagnosed with lung cancer, my husband and I went to his hometown for a family reunion trip that had been planned for several months. All the family knew I had been diagnosed and was scheduled to have surgery upon my return home. They all tended to avoid the subject, but took much more time hugging me than usual.
While we were eating supper one night, my mother-in-law commented on how well I was eating. I told her that it was only natural, now that I was eating for two . . . me and my fast growing tumor.
-------
I’m not afraid to die, I just don’t want to be there when
it happens. - Woody Allen
Doctor: The tests show that your cancer is advanced. You have six months to live.
Patient: But, doc, I can't pay off my medical bills in six months.
Doctor: In that case, you have six months more.
© Copyright 1999, Syd Love
Humor is the absence of terror, and terror the absence of
humor. - Lord Richard Buckley
“Life does not cease to be funny
when people die any more than it ceases to be serious when
people laugh.” - George Bernard Shaw
“Life is pleasant. Death is peaceful. It’s
the transition that’s troublesome.” - Isaac Asimov
and my personal favorite:
Question: "What do you call a young woman who keeps getting lymphoma over and over again?"
Answer: "A lymphomaniac."
--------
Pk is home with poison oak (more of a mental health day than anything else) and DB is crazy busy at work and preparing for the party. I'm still well enough to haul wood and aside from coughing fits that make me vomit - I'm doing really well. Hopefully, my white cell counts will be high enough to get coolaid chemo on Wednesday. and hopefully chemo won't knock me down for the birthday celebrations.
I know you mean well...
Posted on 2005.11.16 at 11:06
Current Mood: defensive
To begin:
It is important that I say (again) that I deeply appreciate your care and your intentions. I think you have presented and challenged me with suggestions that are not off the deep end. You have correctly seen my resistance and I admit that it is more than I care to have. I love you and feel very loved by you.
To continue:
I need to get out the defensive stuff - I need to get these things off my chest so they don't sit there. I will most likely ramble.
Please do not forget that I was in a chemo clinic for multiple hundreds of hours - and I have witnessed more than you ever could have when it comes to cancer.
My resistance to suggestions stems partly from what I have witnessed. It may be that I am jaded or overloaded with information. But I have known many different kinds of people (different ages, genders, races, religons...) with cancer and have listened over long periods of time to their journeys. Not only in the clinic but also in Women Care's support groups where the most alternative therapies are spoken of. Also I have known thousands of people outside of the cancer realm with all kinds of experiences with disease. I have known people that have had healthy, cell-growth producing vegetarian diets and they are now dead. I have witnessed acupuncture treatment work and have witnessed it not work for nausea, vommitting, headaches, chills, fever, pain and neuropathy. I have seen people who rely on prayer - those who make it praise god, those who don't have family say that it was god's will. I have also seen people with my approach (kick ass cancer fighter) go down too. And some have made it.
What I do now may not be working completely. I may need change - in fact, I surely know that I DO need change. But I have to come to it on my own because that's the kind of gal I am. Stubborn and defensive and overloaded and scared and jaded and in some amount of denial. I also feel a bit righteous because I must be doing something right in my regiment of lattes, connection, laughter, massage, sleep and fierce, kick-ass attitude. I'm still here.
People have suggested many things to me over the course of my illness. Some people mention things in passing as in, "Hey, have you heard of or tried xxxx?" but some people are genuinely and adamantly sure that their solution will work for me. They have been converted to believing in it for some reason. Sometimes their motivation is goodwill, sometimes it is monetary (or as a result of someone else's selling techniques.) Sometimes the suggestion is based on heresay but the most strongly opinionated have had some sort of personal experience / conversion to the idea suggested. There is a lot of pressure on me to do these things. Some of them seem wild to me, some seem sensible. But each one of the suggestions listed below is backed by a person who truly believes that their suggestion will help so when I hear your suggestions, they get lumped in with everyone else's because - really - who is to say? Is any person more or less right than another?
a partial list of things that have actually been suggested to me for my healing
energy / eastern / body work, including but not limited to:
reiki
Magnetic Resonance or Bio-resonance
chi gong, Qigong
acupuncture
accupressure
traditional chiropractic
network chiropractic
yoga
colonic flushing / irrigation
special diets, including but not limited to:
raw food diet
flax seed oil diet
diet based on blood type
yeast free diet
dairy free diet
meat free diet
sugar free diet
shark cartilage
vita enhanced water
magnetically charged water
8 glasses of water a day
mega doses of Vitamin C
mega doses of Magnesium
vitamin supplements (there are dozens of preferences)
herbal remedies including, but not limited to:
Aveloz extract (from Brazil)
ecchinaccia tea
aloe vera extract
apricot seed extract
enzyme therapies
salt water
wheatgrass
garlic/cayenne mixture
propolis drops
Chinese herbs
miso soup
raw garlic
bluegreen algae
marijuana
Spiritual / self-help guidence including, but not limited to:
Sri Nisagadatta Maharaj
Ashanabi shaman
angels
Catholic prayer lists
Pagan rituals of renewal and release
chanting nam myoho renge kyo
Jesus
the Pope - using holy water from the Vatican
chanelled guidence from Seth
Shamanic healer
Native American healer
Pliedians- aliens from the Pliedies, or Seven Sisters constellation
Liberty Experience
Avatar (Enlightened Planetary Civilization)
Sathya Sai Baba - using ashes from the ashram on my chakras
and who knows what I have forgotten? When I googled "herbal remedy cancer", for example, there were over 3 million sites listed.
"diet cancer" gave me over 24 million and "diet cancer cure" over 13 million
I also get pretty defensive when I hear someone suggest to me what they cannot do themselves. So it goes both ways - I hear people praise xxxx and see that -even when they manage to hold to the suggestion themselves (which doesn't seem to last for a long time if it happens at all)- they are no more healthy or happy than the average person. And I hear people condemn xxxx when I see that it isn't harming me all that much.
To conclude for the moment:
I do need to change some things. I am not sure how but am confident that I must figure out a way to drink more water, remember to take vitamins and to eat (relatively) well on a regular basis. I will also continue to take the "Wellness Solution" that you have offered even though I doubt it's effectiveness. But in my way of thinking, if something is going to work, it will work. I do not need to believe in it for it to work. Otherwise, all I have to do is believe in myself. Which is mostly what I do anyway.
I will continue to chant when I am moved to and to write when I am moved to and to pray in my own way.
I appreciate (although I may not show it) when you (or anybody) reminds me to drink water and take vitamins. I appreciate specific suggestions for easy food solutions (how about slicing the beets that are in the 'fridge with the spinach in the crisper to make a salad? Can you heat up the soup and have it with the olive bread?) I appreciate being told what to buy at the grocery store.
I will continue to refrain from drinking and doing drugs, refrain from smoking, refrain from staying up too late. I will continue to eat small portions of food and limit my sugar intake. I will continue to use the minimum western medication as I can.
And now that I have explained as much of this as I can, I ask your blessing. I don't need it but I want it. I want peace between us - not the constant struggle always to get me to change. I want unconditional love and I beg your patience in me as I am on this journey. My spirit cannot withstand the constant message that I am not good enough, that if I only did xxx, I would be better. That it is all my fault.
You may be more holy than me. You may have the way and the truth and the light. But, again, I must ask you to be a power of example. When I see something truly change someone's life for the better, I really do try it. And if it works for me, I stick with it. Like not drinking. But I need to make those decisions. And if you condemn me for my decisions, please keep the condemnation to yourself because that alone could kill me.
Thanks for reading it all.
What a birthday!
May I just say right here and right now that Ms. Danielle Bianca Hope is the all-time BEST ever party planner? With love and devotion and what I can only imagine would be months of planning, she pulled off the best birthday weekend I could ever dream of having. Luckily, she had the help of many key people - beloved friends and family members who all worked together to create something magic for me.
Pk, Brk and I headed up to SF on Thursday afternoon. It had been a rough day for me. Chemo was the day before and I was pretty tired from the headaches and late night coughing fits. Brk let Pk and I sleep in unusual afternoon naps while she worked out (she is often seen doing some kind of push-up or sit-up or arm reps just while she is talking - she is awe inspiring in so many simple ways that she would never think she is.) Brk also drove to the city - in lots of traffic - which was quite a gift. It's not her favorite thing to do - nor mine.
When we arrived at DB's apartment, Brk took a mental health walk. When she returned, DB & Brk prepared food for Saturday in the kitchen. While they chatted and chopped and baked and blended, Pk and I watched "Little House on the Prairie" in the living room. We snuggled and relaxed and everyone seemed to enjoy the evening. As I put Parker to sleep that night, the bedtime story started, "40 years ago, at exactly this time, Nanna Jo was putting the baby powder and the lotion on the changing table when she felt her first contractions..." Although Pk has heard the story of his own birth dozens of times, he had never heard the story of mine.
It took a week to recover from my 40th birthday
On Friday morning, my father called early to wish me a happy birthday. I assured him that it was OK that he inadvertantly inturrupted an intimate moment of DB and me - I think we were giggling in the background. He was in a hotel room in Virginia, waiting for orders to get on a ship. We had a really good, long conversation - a priceless gift to any daughter who adores her father as much as I do mine. And he even filled in some of the details that I left out of the story for Pk the night before. I didn't realize that in 1965, his ship was in Boston on the night that I was born in Newport and that he had to make the ride down with a shipmate in the wee hours of the morning. He got there a half hour after I was born and took many of the parenting duties in those first couplle weeks because my mother was ill. I think that's why we are so close.
Both my father and his partner (who is in Philidelphia) both checked in that day to wish me well on my adventures. They generously made it possible to have me run off a cliff!
With those plans changed, DB and I were free to roam the city with my sister (who flew in from Maine with her partner!) and Brk and Pk. We drove through lots of the city - touring Russian Hill and Union Sq. and Chinatown and the Marina and the Mission. Everywhere we went, we saw neighborhoods with their own flavors. We saw beautiful murals and architecture and classic steep hill scenes. We chatted and observed until we were all pretty hungry. We landed in the North Beach section where I had never been. It's the Italian part of town and mangia! mangia! mangia! was first on our list. Oh! my! goodness! Dani treated us all to such delicious food! Our Italian waiter was very kind to take my special order (I am so like Sally in "When Harry Met Sally" when it comes to ordering at resteraunts!) of a modified Penne Putinesca. All I really wanted was pasta with olives and tomatoes. And that's what I got! Yummy!
After dinner, we wandered through Italian stores - the deli with dozens of different kinds of dried sausage hanging from the ceiling, the shoe maker with rows and rows of shoes on the drying racks where years of glue was stuck to the wood, the colorful Italian pottery shop where platters and vases and statues lined every square inch of the room. There were outdoor cafes heated by gas flame and cutlery shops where DB and Pk appreciated the merits of a sharp blade. Finally, we made our way to Stella's bakery where my sister and her partner M treated us to lattes and the finest Italian pasteries. We shared taramisu and canoli and relaxed conversation. By the time we left, the sun was setting on the brick buidings, leaving the resteraunts' warm glow spilling onto the sidewalks.
Brk - who likes to run - ran from North Beach back to DB's. We dropped my sister and M at their hotel and headed home. What a lovely day. It was funny that people wanted to give me their presents and I kept asking to wait. I like to space things out so that I can enjoy all my blessings throughout the day. Pk surprised me with a beautiful leather journal with goldleaf pages that he decorated himself. Brk gave me a hand made redwood picture frame filled with a photo of Pk and DB at the Santa Cruz Boardwalk. I got a wonderful message with my youngest sister singing to me from London. We tried to actually connect in person but it didn't work out. It was so good just to hear her beautiful voice though. I miss her and look forward to hearing what is going on in her new law school situation in the UK.
The day was full of surprise messages actually. My dear CM friend called me from Rome, Italy and B called from NY. A whole bundh of people TOTALLY blew me away by sending video messages of birthday wishes. DB put that gem together on the sly and was going to premiere the videos at the party the next day but brought them out at the perfect moment. It was sooooo cool to get messages from all over - from women I love. And they all had their own personality - T in a field of flowers in Austrailia, P & H goofing around and doing tricks with their cutie pie dog Tucker and Pk's friend Jk singing from behind his skateboard. The beautiful sight of M & D (who can REALLY sing!) and the unforgettable image of Mcy as a 70s porn star! Frc was sideways in British Columbia and P.D. danced her magic in silence with signs to wish me well. I was just floored. People are so cool. I decided that they would all be there at the party the next day. I would make signs and name each one of them and line the hallway with their names. Everyone who called or left a message for me would come to the party!
With Pk all squeaky clean and wrapped in covers on the couch, we gave him the iPod so that he could listen to his favorite tunes on the way to dreamland. DB and I snuggled up to begin reading Isabel Miller's "Patience & Sarah" to each other. We love the story so much that it was hard to put it down but it had been a long day and we had another one ahead of us. I smiled as I fell asleep, thinking of all the people in my life, tucked in DB's arms. What a lovely, relaxing birthday.
The day of the party started early. There was so much to do! What was best about the preparations was that DB and I both like to throw a party and are both good at different things. I worked on ambiance, signage and furniture placement. I lined the curved stairwell with the names of friends and my friend J Mc later brought professional banners that ran all the way down the hall (a 10 foot Happy 40th Birthday, V! banner and a 6 foot banner that read "Laissez Les Bon Temps Roulez!" - which translates "Let the Good Times Roll!" for the entry hall.) I made little signs for the bathroom that had "N'Awlins Talk" - words that are popular in New Orleans and how they are translated. I was hoping for some gris-gris and a lot of gumbo-ya-ya! While I was lining up dozens of candles, DB and Brk worked on food and furniture hauling! They cleared out the bed to the garage in order to fit the poker table which was delivered early. We moved her Buddist altar from the center of the living room to the corner in order to fit the blackjack table.
Yet another side story in this event is the meeting of my friend SK. We met in Boston in 1984 or 85. We lost contact and didn't see each other after 1987 until a very unlikely meeting at a Gay Pride in Santa Cruz in 1998 while P and I were pushing baby Pk in a stroller. SK too had settled on the West Coast and gave me her catering business card which somehow fell out of the diaper bag so I was not able to contact her
While DB and Brk and I worked steadily, my sister and M took Pk to Alcatraz. They spent the whole day playing in the city and got back just in time to get Pk dressed in his costume. Oh! He looked so sharp! He wore a silver grey double breasted suit with his hair slicked to the side and a black gangster hat raked toward the back. I know that I am his mother and it is cliche to say that I think he is handsome but - really! If you could have seen him!
The party itself was, if I had to choose one word, glamourous. The candlelight glittered off the 15 foot ceilings and the Victorian chandeliers were dimmed perfectly. The guests ranged from long-time festival friends to high school friends to DB's Wildside friends to teenagers to fellow mothers. Many people wore costumes - zoot suits and flapper dresses, hobos just off the train, a distressed stockbroker and one couple with authentic everything right down to the 1932 tuxedo! Even the kids had costumes! There were a couple interesting interpretations like Brk was from the year 3030 and went all futuristic, our friend N/S came as a pre-Kinsey sex-pert doctor (she has the white coat from studying medicine in RL), and there was a sweet, older fag who was dressed as a paperboy, shouting Extra! Extra! (his stack of newspapers shouted BUSH RESIGNS!!) There were feather boas and maribou too - the trannie boyz looked great in those!
My sister's high school buddy stood tirelessly next to the pink Kitchenaid blender and made mixed drinks for people - ginger ale and juices with a wedge of lime and everybody - everybody - talked about how good the food was. It looked fabulous but tasted even better! DB donated everything. She is amazing. A green salad with cranberries and nuts and tangy cheeses, beautiful grilled vegetables, creamy pumpkin soup, a stunning platter of artichokes and an array of specialty breads were set out buffet style. The main dishes of pulled pork (smoked for 18 hours over an open flame) with killer barbeque sauce and the Jumbalaya (donated by SK and Beloved Z) sent people going back repeatedly. Somehow they left room for the cookie platter full of goodies including Brk's homemade chocolate chip cookies. The kids had pizza and seemed happy with the Care Bear fruit candy too.
Amidst all the chatter, people actually did play cards too! The dealers were friendly and knowledgable - they kept the hands flowing fast and helped people understand the rules of Texas Hold "Em and BlackJack. Pk, as we found out, is a shark! He got Blackjack on his first hand and stood there to win the next seven hands in a row! He was working for the pink chip! There was no money (gambling isn't legal, dontcha know?) changing hands. People got fun money at the door (where we were raising money for NOLA gals) and played out what they had. It was hysterical to see the pierced faces next to the kids next to the costumed hobos - all sitting around the poker table! DB's favorite moment was seeing my sister's boyfriend M (born and raised in RI, now living in Maine) sitting in a circle of SF gay guys. They were all talking food and having a good time! Another favorite moment was when K & L did the Charleston (at least I think it was the Charleston!) in the middle of the living room. They were perfect! There was jazz all night in every room. We rigged up the computers to play Dixieland and Big Band and Swing and classics of Scott Joplin and Ella Fitzgerald and Count Basie and Duke Ellington. There were some Assylum Street Spankers and Harry Connick Jr mixed in too.
At some point there was a cake. And what a cake! It was a work of art with shaved chocolate and rasberry filling and delicate powdered sugar. There was a candle for each decade and I made sure to be grateful for all the wishes I have had come true before I wished for more! After a toast and a speech, it was back to Texas Hold 'Em. And then, at the end of the night, we had a raffle (what party would be complete without a raffle?!) We had prizes donated from a women's spa and from WWTMC and Good Vibrations (thanks, all!) DB's work donated a couple of gift certificates and we had Jumbo poker playing cards that Pk and his friend took home. It was sad to say goodnight to friends (some drove from Chico and Santa Cruz and T came from and back to Monterey!) but it seemed smiles all around. Since DB's apartment is next to the Castro, some people went to the movies, some went out dancing. Many went home because it had already been a splendid night!
I know that after we got Pk to settle down (he was so excited about his pink chip and his poker deck and still had quite a bit of sugar left in him) I couldn't sleep either! DB and I just layed awake in the dark remembering this detail and that. We felt sad for our friends who got stuck and had to turn around on the Bay Bridge where there was an accident. We raved at our ability to combine forces. We were so grateful that people came and had a good time. We raised a little money and had a lot of fun. It was a success!
The next day, I layed low. I slept a little and helped in the clean up effort. I spent some good quality one on one time with Pk in the city and then Brk took Pk back to the mountain for school. On Monday, DB went to work and I slept all morning. That is practically unheard of for me. But my body needed it. I was TIRED!
On Monday afternoon, DB got off of work early so that we could formalize legal paperwork that we've been wanting to do. It's funny about all the stages of our bonds - a spoken promise, a ring, a piece of paper. We won't be "married" as in have the big party that announces our intentions to the world until February 2007. We'll have a family ceremony this February just as a promise to be the best partners to each other and the best mother and step-butch to Pk. But this was just one more phase in all of that. We decided that we like not doing things the traditional way (I've already tried THAT!) and are grateful to have the chance to love each other.
I am in my living room on the mountain looking at the autumnal flowers send by dear friends in the UK and I have, just this minute, finished with my second of three IVIG treatments for the month (hooray!) and I think I can call it a day. Tomorrow, we bring Pk to Harry Potter and Saturday, we get to sail in Santa Cruz harbor with a friend at the helm. Sunday it's up to SF after church and Monday will see Pk flying alone for the first time. He is going to P's mother's house for Thanksgiving and can hardly wait to see his dad. It's been a while. I feel full and blessed.
Thanks for reading it all....
Slideshow!
Posted protected on 2005.11.21 at 14:53
Current Mood: grateful
Current Music: When the Saints Come Marching In
Hi, I put together the pictures I took into a little slide show here.
http://andreafumagalli.com/party.wmv
If you have more pictures I can add send them to me at dbhope@gmail.com Thanks to all you that contributed to the fundraiser and V's birthday! Love, Dani
Thanksgiving
Posted on 2005.11.23 at 09:30
Current Mood: grateful
Current Music: Kind and Generous, Natalie Merchant
DB and I are spending Thanksgiving at our friends' house on Bernal Hill here in SF. It'll be their family of four, their housemate and her partner, Lynee and her mother and us. It should be a nice day and if Rn is lucky - the surf will be up and we'll take the kids while she surfs in the morning!
I've been thinking a lot about Thanksgiving and instead of writing about it here, I've decided to post a letter sent to a friend in Texas. Here is what I wrote:
And a happy thanksgiving to you all too!
Yes - I certainly have plenty to be grateful for. Thanksgivings are benchmarks for my health since I was diagnosed so close to this holiday 3 years ago. That first year, 2002, I was unable to eat anything but a bit of mushed up pumpkin pie with a lot of whipped cream due to the complete erosion of the skin in my mouth. The second year, I don't think I could eat anything at all. But that was only partly to do with lesions and more to do with nausea and continuous vomitting. In 2004, I had all but lost my sight completely but I was able to have whipped potatoes and yams and even a little turkey and stuffing. It was heaven! No mouthful of food was taken for granted. This year, it looks like I might be back to mashed pie with whipped cream since my mouth is currently full of lesions. I haven't eaten too many solids this week. But maybe things will improve in the next day? We never know.
I have to say that I am grateful for having the chance to have more revealed.
It is not easy to remain chipper and kind at this level of pain. It is easy to focus on what hurts and what I can't have, what I can't do. I lose my temper and have to bite my tongue (which is already bloody enough!!) Although I miss Pk terribly (he is visiting P on the east coast), I am grateful that he is missing out on me being in this kind of quivering pain.
I've been thinking that it is fortunate that there is a holiday that encourages taking time to remember all the goodness. I really do have so much. I really can do so much. I have people who love me. I have the honor of raising a child. I have support and care in my daily life. I have a beautiful, warm place to live and I can see! I can walk up stairs and hills. I can quilt and write and be softened by music.
Giving thanks is good for my soul.
Brk has decided to nourish her soul by going on a week-long solo backpacking trip in the Sierras. She brought along a pumpkin spice Cliff Bar for a treat. She really does live a very simple life and that has enabled the money that you send to go a long way. She bikes or walks or hitchhikes everywhere. Sometimes she takes public transportation. She lives outside in a tree or in the woods and pays no rent. She eats simple, vegetarian food and wears her very small (but functional) wardrobe repeatedly. She is leading a full, rich life outside of caring for Pk (which is full and rich in it's own ways!) She is taking a film class at a local college, learning how to make redwood picture frames at the saw mill nearby, often spending time in the city at DB's apartment where she climbs the fire escape and sleeps on the roof, never inside. She has friends from when she lived here before and a solid base of community in addition to our family, of which she is a full-fledged member.
I think we are doing OK for a few weeks more on the money that you've sent. We are really trying to stretch it. I haven't felt like I am compromising my health though. She always takes Pk when I am in chemo or getting IVIG. She plays with him when I am sick on the couch and cannot. She is there when I need her. And we make sure that she gets enough time to herself too. It's so much to ask of a young person to give up her life of traveling in order to care for Pk. Especially since I never know when or how sick I am going to be. We always give her Monday and Wednesday nights and every weekend off - meaning that DB can cover those times if I need help. That way she can make plans and not be on call. She has lots of other free time too because I only call her when I need her. But she has to stick close by to be on call (especially since she doesn't have a car.) We seem to all be making it work out and we are all grateful to you and Pla for making that possible. Thank you so much.
I hope you get the rest you need to rejuvinate yourselves. Parenting a one year old is a heck of a lot of work! Go, baby, go!
Much love to all - V
Genuine Hunger and Gracious Gratitude
Posted on 2005.11.25 at 10:50
Current Mood: quiet
Current Music: I will not take these things 4 granted, Toad the Wt Sproket
Not that this will be a trend, but I wrote a response letter this morning to my old college buddy from Massachusettes. I thought I would post what I wrote:
Hey Rob - I have to say that I rarely ever read forwards. But it was from you and it's the lazy Friday after Thanksgiving so I figured, what the heck? It was very informative. It's funny that I didn't know some of those because I went to Stafford Upon Avon (outside of London) years back and had a tour guide that was full of stories - including the canopy bed . She also told about "sleep tight" (using a key to tighten the ropes on a bed) and "spruce up" for when the dirt (or slate) floor was so full of animal droppings that spruce boughs had to be added for olfactory sanity. Then, of course, there was "Don't let the bed bugs bite" (an obvious reference to the hazards of thatched roofs.)
So how the heck are you, my old friend? We're 40 - I can call you old, can't I?
I just turned 40 actually. I had a stunning party. It's not like me these days to make a fuss. I am still battling cancer on a daily basis. I am still clean and sober and what mother has the time to plan a big ordeal? But the situation for lesbians in New Orleans is dire (well, it's hard for so many but the federal government won't recognize the dykes as families.) So I wanted to raise money and having people come for a big 40th to-do seemed to make sense. It worked. People dressed up in costumes from the 1920s and 30s and there was dixieland, big band and original New Orleans jazz in every room. We had blackjack and poker dealers who kept things rolling and the food was outrageous. My partner (her name is DB) LOVES food - she loves to cook it and present it and definately has a talent. So it was beautiful southern fare. All in all it had the glamour of a Mardi Gras Fete. AND we raised some good money for a good cause.
I was wiped out for a week afterward though. Chemo is NOT for sissies, as I am sure you know. It's been a heck of a lot easier to deal with it all with my new love and with Pk being 8 and a half. I mean 8 has it's challenges, of course, but he can do so much more now than when I first got diagnosed. And, although the constant threat of my impending death is always with us, he is more used to it and doesn't have the nightmares, etc. that he used to. We are a pretty decent team. And I am in really great shape overall. I am withstanding the chemo and my pooled blood product that keeps my skin intact (IVIG) with minimal side effects. I get a CT scan in December to see if the cancer is receding from my lungs or my abdomen. And if, on the off-chance, it has spread, I can always look into an autologous bone marrow transplant. There are options.
DB and I have had a few child-less days here in San Francisco because Pk went to the east coast to be with P (I told you that P/WW/my ex is now a man, right?) That is good for them because Pk hardly gets to see P. And it was good for DB and I because we could finalize some legal paperwork that we needed to in order for DB to make medical decisions should I ever need that. We decided to formalize it all at City Hall which is a very grande Victorian building with enormous sweeping stairs and gorgeous gold leaf lighting fixtures and an ornate rotunda, the largest in the country. Quite a sight. But, alas, we needed to walk a few blocks, they said, to the State Building instead.
We went to the 14th floor only to find out that if we mailed our form in, it was less money than if we paid right there. And that for domestic partnerships they didn't take cash or credit cards. Only checks or money orders. Obviously, gay people cannot be trusted with plastic! So, not giving up, we left the state building, went to the bank (who carries a checkbook anymore?) and came back up to the 14th floor with our money order. There was a very nice view up there so it was not surprising that Govenor Arnold Scwarzenagger had his office right there, next to the Secretary of State's office.
While we waited for our official paperwork to be officially processed, we decided to stroll in to see if Arnold was in. We were not surprised, it being the day before Thanksgiving, that he wasn't there. But we were VERY surprised to find his office open, with no one there. We seized the opportunity, being the rebels that we are, to make out on his conference table (I wonder if we were on security camera? oh well!) and to sit in front of the life-size poster of Arnold and Nelson Mandela to write a letter. Maybe it was the floor to ceiling flags that got us in a patriotic mood. Maybe it was the framed picture of he and Maria that got us in the generous mood of lovers. But whatever possessed us, we wrote a letter to him. We thanked him for the opportunity to be recognized as a family in the state of California. We told him how it broke out hearts to know that other same-sex families in other states didn't have any equality in their partnerships and that we just knew he would champion justice. We left it for him to find when he returns from his humble Thanksgiving, wherever THAT was.
We came home and celebrated by making a turkey and my beloved mother's famous cranberry orange relish and many pumpkin pies that night. The next day, on Thanksgiving itself, we took what had made plus leftover food (that had been frozen) and supplies from my birthday party, and we made an assembly line. We fixed many plates with turkey and cranberry sandwhiches and pumpkin pie and little applejuice in boxes. We wrapped them in cellophane and loaded them onto deep trays and hit the streets of San Fransisco.
We left plates just outside the dumpster encampment across from DB's apartment, in case the family was still asleep (at that point, it was still pretty early.) Then we met Domonique and Enrique, who were having an impromptu "yard" sale in a parking lot, trying to raise money from other's trash. They were delighted with dinner and even more so when we offered whipped cream for the pie! We met Shirley who was so wrinkled and so brown from dirt. She showed me the contents of her shopping cart and told me that she used to cook all the time but doesn't anymore. She hadn't eaten anything at all that day and gladly recieved our offer while we chatted. She had beautiful Irish eyes and a beautiful smile. There was a young black woman carrying 8 garbage bags full of recycling to the redemtion center and we met a lot of people who had set up camp in Dolores Park, taking advantage of the nice weather. A young woman in leatherette pants walked up to us quietly. "Do you have any left?" "Sure!", we said. She gave a half smile from under her long hair and wished us a happy thanksgiving. And the last plate went to a man in the Castro who had given up on the idea of tasting turkey for Thanksgiving. He didn't get to the food line on time and so had given up. He talked of his family, far away, and of how grateful he was for a home-cooked meal. It was hard to just listen respectfully and not cry. Well, we did cry, but only when we were back in the car together. We could have fed so many more people. We could have handed out plates all day long and still not reached everyone who was hungry. We could probably do that every day and STILL no reach everyone. But we did one little bit and that felt good.
It's funny. I was ready for the staggering, over emotional ramblings of drunk men who slur "God bless you" and I was ready for the mentally ill who are forced onto the streets with their carts. I was ready for speed freaks who would refuse food (we did meet one woman who fit that description although she was pretty mellow all in all.) I don't think I was ready for sober people to look me straight in the eye and shake my hand. I didn't know how generous people would be with their stories. And I naivley did not know how many people fall through all the cracks. I thought that there would be plenty of food at local churches and shelters. But I was wrong. The people we met were full of quiet digity, genuine hunger and gracious gratitude.
Well - I have certainly rambled on more than I anticpated (what's new, eh?) I would love to know how you are, how your family is. And although DB and I are currently looking for a place to live, we go between her apartment in the city and my home in the mountains of Los Gatos. I'll let you know when we get a new address. Meanwhile, the other details on how to reach me are below.
Take care, Rob. And thanks for the forward.
Big love, V
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