Monday, October 10, 2005
October 2005 posts from livejournal
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Wild Card
Posted on 2005.10.03 at 10:50
Current Mood: scattered
Current Music: Asylum Street Spankers
OK - the Boston Red Sox have the Wild Card spot and will start their series with the Chicago White Sox (does this mean a Pink Sox series?) on Tuesday. Baseball is keeping me passionate. Picture me (if you will) watching a few key innings - a lone Boston fan, hands in finger-crossed prayer and then jumping with glee in front of a flatscreen display model at the local Circuit City while DB and her 78 year old mother shopped for a computer moniter and Pk watched a movie in the surround-sound chair. Oh, dear. What a sight!
So - speaking of wild cards (for cancer is CERTAINLY that!) I am definately doing better than last week. Thank you so much for those of you who called and wrote. Sure do appreciate that.
I guess I had some kind of infection that kind of took over. My doctor was PISSED that no one brought me to the hospital and that I am such a stubborn patient. He dragged me and DB into the office and gave us a lecture. If I EVER get that bad again - I am to be brought to the hospital immediately, be tested for this that and the other thing - put on antibiotics, blah blah blah.
It's true - I am a terrible reporter. Someone asks if I'm OK - do I need anything? And I'm all like no thanks - I'm OK - just put another blanket on me (even though it's 85 degrees in here and I've already got three blankets and a heating pad on me...) My thinking - especially when I get in that horrible sick place - is that it could be worse. It HAS been worse. I can ride it out....So we have a plan of action now. No one is allowed to listen to me. Just take my temperature and watch me. If I shake or if my teeth chatter, I get dragged kicking and screaming to the car. (Not that I would kick and scream - but I sure wouldn't initiate a trip to the hospital - y'all know how much I HATE them...)
So now all I'm dealing with is a tongue full of lesions (pretty freaking painful) and a strange new cough and the ever-present search for this month's supply of IVIG. I'm losing a little weight again because I can't eat that much - it's back to soft breads, puddings, oatmeal and nutrition shakes. But luckily I gained enough weight with DB's fabulous cooking over the last few months to cover a loss.
DB and I are perfecting the art of sexy kissing without tongues. Her imagination and ability to handle all of this blows. my. mind.
This was a very nice weekend for our family. DB and Pk and Db's mother and I spent some good quality time together. It felt good. We are managing to find a balance of pace so that Pk gets to play out his full tilt boogie energy and I don't push myself and DB gets to include her mother. Scottish Highland Games, Church, Fish and Chips on Capitola beach. It was a beautiful mix of fiddles and politics and history and sunshine. And when the 8 and 78 year olds were asleep we always managed to find time for "Home Therapy."
The snail slow pace of house hunting continues. We may or may not move in together this year. Pk needs to stay in the same school and would like to be close to his friends for play dates. DB needs to work in SF. I need to be close enough to hospital, chemo, grocery stores, etc. and we all want to be together and have a puppy. How to find something near enough for each of our needs, in our price range, not too funky? We got excited by a mountain cottage but they said no because of the dog (I personally think it was when they found out we were dykes) and we looked at a cute 700 sq. foot cabin/trailer but had to say no because it didn't quite make it for all of us. Something will happen when the time is right.
In the meantime - I am keeping busy with a new quilt commission (thank you, Jeajea!!!) I am sooooo excited to be working on this piece. The original pieces were made between 1971 and 1974 and I will make them into a quilt. VERY cool.
Hey - DB and I got new pictures of us from the Folsom Street Fair up on Friendster (thanks to the photographer Mark Chester) if you want to see (my name is "JustV" there). Check them out!
Oh! and would you get in touch with DB if you want to be invited to my 40th birthday party? We're going to try to make it a fundraiser for the gals in New Orleans who need so much help right now. It'll most likely be in San Francisco. Let everyone in the Bay area who knows me know that it's happening, OK? My bday is 11/11 but the party will probably be 11/12 or 13. More details as they become clearer.
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How do you do it?
Posted on 2005.10.05 at 08:58
Current Mood: compassionate
Current Music: Day by Day, Godspell
Different people ask me this in different ways all the time. And I do not know the answer.
Yesterday DB and I were explaining Rosh Hashanna and Yom Kippur to Pk and he really didn't get the fasting part. I said things like: "If you fast, you get hungry and then each time your tummy grumbles, maybe you think about how good it will be to eat. Or maybe you'll think about where food comes from and be grateful for it. Or maybe you'll think of all the people who feel hunger like this every day and have more compassion."
This morning I awoke hungry (again) and knew that I had a shake to look forward to. I almost started to whine in my head - why me? My eyes are in SO much pain (mornings are the worst when the lenses have been out all night and the eyeballs are stuck to the lids and it's dry and scratchy). My lungs (worst in the morning as well) are tight and it's hard to breathe deeply. I have a not too bad cough that comes and goes. My mouth is throbbing and bleeding and there is no IVIG to be easily found in my area and why why why.
And it occurred to me that although fasting is not part of my spiritual practice - why not make it be? Why not take all of the pain that I am in and make it part of understanding the world better. More compassion. I mean I've been doing that but this seems taking it to a deeper level. I'm not sure why.
I am determined to use pain medications as minimally as possible. So far, I have pretty much avoided them altogether since the summer of 04. I take advil sometimes and I use lidocaine to numb my mouth. But no pain killers. That determination keeps me going.
And I have to say that my life is so rich and full - with DB and Pk and the new quilt and planning my birthday party and just getting by - I don't WANT to spend precious time complaining. It IS alot to deal with. It doesn't seem fair sometimes. But what are my options?
Being active is one, I suppose. On a seperate journal entry I will ask you to take a few minutes and make your voice heard. Maybe the more of us there are, the better the chances there are of changing the IVIG situation.
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You can help me get the IVIG I need
Posted private on 2005.10.05 at 09:46
Current Mood: determined
Current Music: We Shall Overcome
So I need your help - as do all people trying to get IVIG these days. To better understand the situation, let me say that Medicare is the federally subsidized health insurance for senior citezens and the disabled which is manditory to have. It's not free and if I opt out of it, it's unlikely that I will ever be eligible for it in the future. And even though I have private health insurance (thank you, Daddy!) doctors MUST use Medicare as my primary insurance and go by their federal rules.
Medicare recently made it impossible to receive IVIG (intravenous immuniglobulin - a pooled blood product as close to white blood as the body can handle) in a doctor's office. It can only be received in the hospital (SOOOOOO stupid since hospitals are so much more expensive!!) but the hospitals have tiny allotments for their IVIG patients. My treatment is 180 grams over three days every three weeks, for example, and the hospital only gets 200 grams total for the month to try to treat everyone. Obviously the situation is out of control.
So - if you would kindly take a few minutes go to
http://capwiz.com/immune/home/'
and click on the button that says: Ensure Access to IVIG For Medicare Patients Click Here.
I would be so grateful. There is a pre-written letter so all you need to do is put your name and address and send it. If you want to put in a personal message in the space provided, you can write your own or cut and paste this:
I have a friend who has paraneoplastic pemphigus (PNP) - a disease fatal in over 90% of known cases. She also has cancer - lymphoma - which is the underlying reason for the PNP. PNP is an auto-immune allergic reaction to cancer and it causes her T and B cells to eat the proteins that hold together her skin cells. Her skin literally falls apart on a cellular level. The only thing that has staved off this process is IVIG.
My friend began IVIG treatment at her oncologist's office in the early spring of 2003 when 60% of her body was burnt from the PNP and the process of her becoming blind (as the skin and glands were eaten away in the eyes) was well under way. IVIG saved her life and she has been receiving it since with good results. Although the damage to her eyes is irreversible, she has found lens devices to cover her cornea and at least her skin is intact.
Well - it WAS intact. Until IVIG became unavailable under the new Medicare situation this summer. Her doctor can no longer treat her in his office (even though she also has private insurance) and the local hospitals have such a small allotment that they cannot take on new patients, even ones with life threatening diseases such as hers.
She is not able to eat normal food currently and has no idea how much skin will lesion. She MUST be able to receive IVIG. This situation is NOT acceptable.
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Birthday Plans!
Posted on 2005.10.10 at 10:01
Current Mood: inspired
Current Music: The Wonder of You, Elvis
I'm very excited - DB and I finished making plans for my birthday party! It is going to be at her house in SF on November 12th from 7-11.
It's going to be a Blackjack / Poker night where all are invited to wear 1920s and 1930s costumes. We'll play jazz and have nice food and some prizes too! All the proceeds of the evening will go to the special fund for the women from New Orleans (set up by Puma from Festival.) The invitation has me on the cover of the Saturday Evening Post with all the deets on the back. We'll try to send them out to all the email addys we have plus in snail mail if we have it. We are encouraging folks to help us raise lots of money for the women we know. Obviously, many have given, many have no money to give and we realize that natural disasters and those in need are larger than the resources we have - but we'll ask everyone to consider putting the New Orleans women on the consideration list.
And in other news - our fingers are crossed and we are praying for the best possible outcome for a mountain cottage that we have fallen in love with. It's teeny tiny (700 square feet) but in an incredible situation and we can afford it. It's a mile and a half from where Pk and I live now (yes, DB will commute to SF but only 3 days a week. The other days she can telecommute.) It's in an intentional community with artists and children and gardeners (13 people total - including us). It's on ten acres of green mountain land, has a pool and a hot tub and outdoor showers. There is an established bonfire circle for rituals and redwood groves, a year-round creek, huge, fabulous flower and vegetable gardens. There is an amazing communal art studio (a round structure with a 15 foot dragon sculpted into the building), an outdoor kitchen - all tiled and beautiful with a huge outdoor brick oven covered in a copper sculpture of a dragon with the flames of the oven coming from it's nostrils! The cottage has a gorgeous view of vinyards and mountains, is under the redwoods but has plenty of sun through the shade, has a woodstove, a loft for Pk, a trampoline built into the front yard and a place for both DB's office and my quilt studio if we scale back our stuff AND a treehouse for Pk. They love dogs, don't watch tv, don't do drugs, have magical dragons and hearts everywhere AND are clothing optional. I cannot imagine in my wildest dreams anything more inspiring. They have others who want to live there (as you can imagine) so we just wait now.
pain
Posted on 2005.10.18 at 12:14
Current Mood: in pain
Current Music: head banging industrial
yee-ikes
it's anothr one of those fever, chills, vice grip head pain - so much pain that it makes me nauseous -days. flat out. cant get up - typing from bed. it's better now than a few hours ago - had to ask someone else to take pk to school. Brk is here now and I am having tea.
I think having ivig (yes- we found it but had to get it from two different distributers & the second kind was really rough on me) AND chemo in the same week was too much.
painpainpain
And I am being stubborn (no, not me!) about pain meds. Just refusing them because yes they will help the pain but at a cost to my well-being. they mess up my digestive system and wreak havoc and it just isn't worth it in the long run. so I ride out these crazy days in whattever ways I can.
we're giving up on looking for housing for a while- the magical dragon heart place wanted a single commuter as it turned out. very disappointing. and it's too much to do with being a good mother, planning the party and being sick. so we'll wait.
so grateful for Brk and DB - great to have them as a family. We make meals and watch family movies on Sunday nights. Brk bakes with him and DB and Pk carved pumpkins to great success. Pk has lots of love and time for play and homework and being outdoors. Last night Pk and I snuggled in the big outdoor chair and watched the almost full moon with rows of whispy clouds surrounding it. very rich.
k - just wanted to check in
thanks to those of you participating in my birthday - I appreciate it.
V
Not Right
Posted on 2005.10.24 at 13:12
Current Mood: useful
Current Music: Nobody Knows The Trouble I Seen
Oh yeah, Baby. it's a roller coaster ride. Sometimes I am up, sometimes I am down. Last week brought gripping headaches and fever and chills (again.) I broke down and took a pain med but it made me sick so I continue to avoid that. I also avoid the hospital. Sometimes that means taking my temp and saying "OK If it doesn't go down in 20 minutes, we'll go." and then praying like hell that it goes down! I HATE hospitals but I've been warned that if I get a blood infection, it'll kill me in 24 hours if untreated. Geez. They really know how to intimidate a gal!
I only have a moderate headache at the moment & even that would improve if I would get off my butt and take a handful of advil. No complaints. And, wiith the exception of a persistant but non-threatening cough - I am doing A-OK.
DB, Pk and I had a lovely time at L & L's party in Berkeley for the Portland gals. Wonderful to see so many workers. Laughed a lot. Talked a lot. And Pk was thrilled with both the fog machine and the whipped cream.
I got my first bill from the IVIG treatment that I got in the hospital last spring (before the allotments got too small to accommodate me there.) The drug alone - the IVIG - was $26,897 a DAY. For three days every three weeks. That's not even including the nursing care, the needles, the saline, the hepron, on and on and on. I wonder what it will cost at home?
DB - bless her soul - said (with earnest moral conviction) "That is not right."
Unbelievable. And yet true. That is three TIMES as much as the doctor's office (where the Federal government won't let me get treated) charges.
---------------
And, now, for a political ad:
If you live in CA, by the way, please vote no on Prop 78 and yes on 79.
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If any of you know H MacAllister from her fabulous queerfatrevue activism and are NOT hooked in to how you can help, let me know. I feel good about finally having a use for walking in that lonely place of only known survivor. It's been over 3 years since my first symptoms of PNP - in Dec. it'll be 3 years since the cancer diagnosis. No other known survivors over 2 years. I can safely say that I have some experience to share with her. And that I can be of use.
THAT is totally cool.
OK - I am off to vaccuum and quilt. And then to pick up Pk - who (surprisingly) has chosen to be the grim reaper for Halloween. Hmmm.
Love, V
PS OOoooo - I forgot to say that I am mighty excited about the party - people are figuring out costumes - flappers, gangsters, 1930s Hollywood / Greta Garbo, Okies from the dust bowl, dandy chaps who play polo...fun fun!
CA Voters
Posted private on 2005.10.24 at 13:44
Current Mood: patriotic
Current Music: America the Beautiful
CA Green Party sez:
NO Proposition 73 - Waiting Period and Parental Notification Before Termination of
Minor's Pregnancy.
This proposition places a notification requirement on doctors before an abortion procedure may be performed on a minor. Unless the minor applies for a waiver from a judge within the doctor's jurisdiction, the minor's parent or legal guardian must be notified before the procedure, and a 48-hour waiting period must be respected.
Greens advocate full access to safe and reliable reproductive information and services – including abortions. This should be true regardless of whether teens have been abused, are part of functional or dysfunctional families, or they live in rural or urban areas. This initiative is one more step in the process to limit women’s reproductive choices. All research shows that the availability of reproductive information and services lowers the incidence of teen pregnancies and abortions.
Proposition 74 - Public School Teachers. Waiting Period for Permanent Status.
This proposition would increase the probationary period for teachers from the current two years to five years. During probation, teachers can be dismissed without cause or reason.
School administrators have arbitrarily dismissed probationary teachers to intimidate new teachers from speaking up at meetings or engaging in union activity. This initiative appears to be designed to keep new teachers intimidated, inactive, and fearful of supporting their teacher’s union for a full five years. This would greatly weaken California’s teacher unions at a time when they (and all of public education) are under heavy fire from the Schwarzenegger administration.
Contrary to the inferences of Proposition 74’s advocates, permanent teachers do not have tenured status. They can be dismissed for a variety of reasons specified in the state education code. But permanent teachers have the right to due process; they cannot be dismissed without cause.
Proposition 75 - Public Employee Union Dues. Required Consent for
Political Contributions.
This initiative would, "Prohibit public employee labor organizations from using dues or fees for political contributions unless the employee provides prior consent each year on a specified written form" (from official summary).
The big businesses who funded Prop 75 want to weaken the labor movement on the political front, and they want to cut wages, pensions and other benefits for workers.
Currently, most unions offer an “opt-out” check box on their union form for those members who do not want their dues used for political purposes. This initiative would change this to an “opt-in” method that each member has to renew each year to support their union’s political activities.
In the interest of fairness, the equivalent for business would be to get the approval of stockholders for political donations that a publicly held corporation wants to make. But we’re not hearing this from the backers of Prop 75 even though businesses far outspend working people in political contributions.
NO Proposition 76 - State Spending and School Funding Limits.
This initiative cuts school funding by over $4 billion every year – $600 per student – leading to more overcrowded classrooms, teacher layoffs, and fewer textbooks and classroom materials. Specifically, it would tighten the cap on total state spending; end Prop 98’s protections for schools and colleges; and require automatic cuts across all social and civic services if tax revenues drop.
We think some things are too important to cut – things like education, health care, and fire protection. Schwarzenegger and other Prop 76 proponents want to impose required cuts to vital services while prohibiting cuts to special interests like the California Dried Plum Board and “pork barrel” road building projects.
Greens believe that fair taxation statutes will be needed to finance all state expenditures, and that legislators should be increasingly more responsible to the taxpayers for increasing Public Education spending in particular. Legislators should NOT be forced by Prop 76 to either reduce spending to match revenues, or to yield responsibility for needed spending reductions to the Governor.
???? Proposition 77 - Redistricting.
The Green Party could not come to agreement on a position. NO and NO POSITION were the predominant votes.
This initiative would create a constitutional amendment requiring a three-member panel of retired judges to draw congressional and state legislative districts, rather than the members of the current legislature. This would supposedly take the party politics out of redistricting. The redistricting would occur as soon as possible.
YES on 77 – Opposing this bill would put us in the same camp with Democrat and Republican incumbents who want to continue to run in their gerrymandered districts. This bill does nothing for Greens, and still makes it look like something is happening. No matter how they draw the districts, only the Republicrats can win due to the lock that corporate money and winner-take-all voting has put on elections.
NO POSITION on 77 – Other states have tried independent or bipartisan redistricting panels. These efforts did not result in a significant difference in which party gets elected in any given district. Passage of this proposition may bring some relief from the extremes of gerrymandering, but let's recognize that it will not be a significant improvement in democracy for Californians.
This is a distraction from real reform. The problem is single-member (one winner) districts using winner-take-all voting. There is no gerrymandering scheme that will accomplish fair and balanced representation of voters under such a system. The solution is multi-member districts using proportional representation voting. This provides majority rule and minority representation regardless of how boundaries are drawn.
NO Proposition 78 - Prescription Drug Discounts (business version).
YES Proposition 79 - Prescription Drug Discounts (consumer version).
Health Access California, and other labor and consumer groups, sponsored Prop 79, which would use the purchasing power of the State of California to negotiate prescription-drug discounts for millions of Californians that now pay retail prices for these medications. This measure is opposed by "Big Pharma," the prescription drug industry, which also sponsored a counter-measure, Prop 78.
The San Francisco Chronicle (July 13, 2005) ran a front-page story listing 12 drug companies which have contributed $43 million since June 16 for this battle. Pfizer, Merck, and GlaxoSmithKline each contributed $8.5 million to their industry's "California Initiative Fund."
The Alliance for a Better California (the coalition of nurses, teachers, state employees, etc.) also worked to put Prop 79 on the ballot. Much of the language came from a measure that passed the legislature last year but was vetoed by Governor Schwarzenegger.
The major difference between these Props is that Prop 79 is mandatory for the drug companies. Firms that don't provide medicines under this program for the same price they charge MediCal could be barred from selling to the State's MediCal program. Under Prop 78, drug company participation is voluntary.
????? Proposition 80 - Electric Service Providers. Regulation.
The Green Party could not come to agreement on a position.
This initiative stems from a bill passed in the CA legislature (AB 2006) in 2004 that would have required utilities and other power suppliers to plan rationally for the future by re-regulating energy in California. Governor Schwarzenegger vetoed it, preferring "competitively priced" electricity over regulated electricity, even if residential rates go up in the process. So, TURN (The Utility Reform Network) is taking the bill to the voters.
YES on 80 – Blackouts due to power shortages and market manipulation did not exist in California prior to deregulation (all previous blackouts resulted from transmission or distribution outages). This proposition re-establishes legal requirements that were abandoned during deregulation. “Integrated resource planning” prohibits large commercial customers from jumping back and forth between “direct access” (power from independent providers) and utility services, thus providing more certainty to utilities in their purchase planning. There are also requirements for “adequate reserves” to prevent blackouts due to power “shortages,” as well as restoring obligations on corporations supplying energy to California - PG&E, SCE and SDG&E - to serve California consumers rather than out-of-state energy suppliers.
Other favorable aspects of this initiative are the requirement for all retail electric sellers to increase renewable energy resource procurement by at least 1% each year, and moving up the date of the state's 20% renewable energy requirement from 2017 to 2010 (decreasing our dependence on expensive fossil fuels). Similarly, “first priority for energy efficiency” means efficiency programs will be pursued before new power plants are built.
NO and NO POSITION on 80 – It foolishly gives even more authority to the CPUC, an agency frequently criticized by consumer groups. It locks communities into long term energy contracts with private corporate energy providers. It does allow Community Choice Aggregation programs, but the language is not clear and comprehensive so it could seriously undermine a community’s ability to start a CCA.
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Wild Card
Posted on 2005.10.03 at 10:50
Current Mood: scattered
Current Music: Asylum Street Spankers
OK - the Boston Red Sox have the Wild Card spot and will start their series with the Chicago White Sox (does this mean a Pink Sox series?) on Tuesday. Baseball is keeping me passionate. Picture me (if you will) watching a few key innings - a lone Boston fan, hands in finger-crossed prayer and then jumping with glee in front of a flatscreen display model at the local Circuit City while DB and her 78 year old mother shopped for a computer moniter and Pk watched a movie in the surround-sound chair. Oh, dear. What a sight!
So - speaking of wild cards (for cancer is CERTAINLY that!) I am definately doing better than last week. Thank you so much for those of you who called and wrote. Sure do appreciate that.
I guess I had some kind of infection that kind of took over. My doctor was PISSED that no one brought me to the hospital and that I am such a stubborn patient. He dragged me and DB into the office and gave us a lecture. If I EVER get that bad again - I am to be brought to the hospital immediately, be tested for this that and the other thing - put on antibiotics, blah blah blah.
It's true - I am a terrible reporter. Someone asks if I'm OK - do I need anything? And I'm all like no thanks - I'm OK - just put another blanket on me (even though it's 85 degrees in here and I've already got three blankets and a heating pad on me...) My thinking - especially when I get in that horrible sick place - is that it could be worse. It HAS been worse. I can ride it out....So we have a plan of action now. No one is allowed to listen to me. Just take my temperature and watch me. If I shake or if my teeth chatter, I get dragged kicking and screaming to the car. (Not that I would kick and scream - but I sure wouldn't initiate a trip to the hospital - y'all know how much I HATE them...)
So now all I'm dealing with is a tongue full of lesions (pretty freaking painful) and a strange new cough and the ever-present search for this month's supply of IVIG. I'm losing a little weight again because I can't eat that much - it's back to soft breads, puddings, oatmeal and nutrition shakes. But luckily I gained enough weight with DB's fabulous cooking over the last few months to cover a loss.
DB and I are perfecting the art of sexy kissing without tongues. Her imagination and ability to handle all of this blows. my. mind.
This was a very nice weekend for our family. DB and Pk and Db's mother and I spent some good quality time together. It felt good. We are managing to find a balance of pace so that Pk gets to play out his full tilt boogie energy and I don't push myself and DB gets to include her mother. Scottish Highland Games, Church, Fish and Chips on Capitola beach. It was a beautiful mix of fiddles and politics and history and sunshine. And when the 8 and 78 year olds were asleep we always managed to find time for "Home Therapy."
The snail slow pace of house hunting continues. We may or may not move in together this year. Pk needs to stay in the same school and would like to be close to his friends for play dates. DB needs to work in SF. I need to be close enough to hospital, chemo, grocery stores, etc. and we all want to be together and have a puppy. How to find something near enough for each of our needs, in our price range, not too funky? We got excited by a mountain cottage but they said no because of the dog (I personally think it was when they found out we were dykes) and we looked at a cute 700 sq. foot cabin/trailer but had to say no because it didn't quite make it for all of us. Something will happen when the time is right.
In the meantime - I am keeping busy with a new quilt commission (thank you, Jeajea!!!) I am sooooo excited to be working on this piece. The original pieces were made between 1971 and 1974 and I will make them into a quilt. VERY cool.
Hey - DB and I got new pictures of us from the Folsom Street Fair up on Friendster (thanks to the photographer Mark Chester) if you want to see (my name is "JustV" there). Check them out!
Oh! and would you get in touch with DB if you want to be invited to my 40th birthday party? We're going to try to make it a fundraiser for the gals in New Orleans who need so much help right now. It'll most likely be in San Francisco. Let everyone in the Bay area who knows me know that it's happening, OK? My bday is 11/11 but the party will probably be 11/12 or 13. More details as they become clearer.
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How do you do it?
Posted on 2005.10.05 at 08:58
Current Mood: compassionate
Current Music: Day by Day, Godspell
Different people ask me this in different ways all the time. And I do not know the answer.
Yesterday DB and I were explaining Rosh Hashanna and Yom Kippur to Pk and he really didn't get the fasting part. I said things like: "If you fast, you get hungry and then each time your tummy grumbles, maybe you think about how good it will be to eat. Or maybe you'll think about where food comes from and be grateful for it. Or maybe you'll think of all the people who feel hunger like this every day and have more compassion."
This morning I awoke hungry (again) and knew that I had a shake to look forward to. I almost started to whine in my head - why me? My eyes are in SO much pain (mornings are the worst when the lenses have been out all night and the eyeballs are stuck to the lids and it's dry and scratchy). My lungs (worst in the morning as well) are tight and it's hard to breathe deeply. I have a not too bad cough that comes and goes. My mouth is throbbing and bleeding and there is no IVIG to be easily found in my area and why why why.
And it occurred to me that although fasting is not part of my spiritual practice - why not make it be? Why not take all of the pain that I am in and make it part of understanding the world better. More compassion. I mean I've been doing that but this seems taking it to a deeper level. I'm not sure why.
I am determined to use pain medications as minimally as possible. So far, I have pretty much avoided them altogether since the summer of 04. I take advil sometimes and I use lidocaine to numb my mouth. But no pain killers. That determination keeps me going.
And I have to say that my life is so rich and full - with DB and Pk and the new quilt and planning my birthday party and just getting by - I don't WANT to spend precious time complaining. It IS alot to deal with. It doesn't seem fair sometimes. But what are my options?
Being active is one, I suppose. On a seperate journal entry I will ask you to take a few minutes and make your voice heard. Maybe the more of us there are, the better the chances there are of changing the IVIG situation.
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You can help me get the IVIG I need
Posted private on 2005.10.05 at 09:46
Current Mood: determined
Current Music: We Shall Overcome
So I need your help - as do all people trying to get IVIG these days. To better understand the situation, let me say that Medicare is the federally subsidized health insurance for senior citezens and the disabled which is manditory to have. It's not free and if I opt out of it, it's unlikely that I will ever be eligible for it in the future. And even though I have private health insurance (thank you, Daddy!) doctors MUST use Medicare as my primary insurance and go by their federal rules.
Medicare recently made it impossible to receive IVIG (intravenous immuniglobulin - a pooled blood product as close to white blood as the body can handle) in a doctor's office. It can only be received in the hospital (SOOOOOO stupid since hospitals are so much more expensive!!) but the hospitals have tiny allotments for their IVIG patients. My treatment is 180 grams over three days every three weeks, for example, and the hospital only gets 200 grams total for the month to try to treat everyone. Obviously the situation is out of control.
So - if you would kindly take a few minutes go to
http://capwiz.com/immune/home/'
and click on the button that says: Ensure Access to IVIG For Medicare Patients Click Here.
I would be so grateful. There is a pre-written letter so all you need to do is put your name and address and send it. If you want to put in a personal message in the space provided, you can write your own or cut and paste this:
I have a friend who has paraneoplastic pemphigus (PNP) - a disease fatal in over 90% of known cases. She also has cancer - lymphoma - which is the underlying reason for the PNP. PNP is an auto-immune allergic reaction to cancer and it causes her T and B cells to eat the proteins that hold together her skin cells. Her skin literally falls apart on a cellular level. The only thing that has staved off this process is IVIG.
My friend began IVIG treatment at her oncologist's office in the early spring of 2003 when 60% of her body was burnt from the PNP and the process of her becoming blind (as the skin and glands were eaten away in the eyes) was well under way. IVIG saved her life and she has been receiving it since with good results. Although the damage to her eyes is irreversible, she has found lens devices to cover her cornea and at least her skin is intact.
Well - it WAS intact. Until IVIG became unavailable under the new Medicare situation this summer. Her doctor can no longer treat her in his office (even though she also has private insurance) and the local hospitals have such a small allotment that they cannot take on new patients, even ones with life threatening diseases such as hers.
She is not able to eat normal food currently and has no idea how much skin will lesion. She MUST be able to receive IVIG. This situation is NOT acceptable.
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Birthday Plans!
Posted on 2005.10.10 at 10:01
Current Mood: inspired
Current Music: The Wonder of You, Elvis
I'm very excited - DB and I finished making plans for my birthday party! It is going to be at her house in SF on November 12th from 7-11.
It's going to be a Blackjack / Poker night where all are invited to wear 1920s and 1930s costumes. We'll play jazz and have nice food and some prizes too! All the proceeds of the evening will go to the special fund for the women from New Orleans (set up by Puma from Festival.) The invitation has me on the cover of the Saturday Evening Post with all the deets on the back. We'll try to send them out to all the email addys we have plus in snail mail if we have it. We are encouraging folks to help us raise lots of money for the women we know. Obviously, many have given, many have no money to give and we realize that natural disasters and those in need are larger than the resources we have - but we'll ask everyone to consider putting the New Orleans women on the consideration list.
And in other news - our fingers are crossed and we are praying for the best possible outcome for a mountain cottage that we have fallen in love with. It's teeny tiny (700 square feet) but in an incredible situation and we can afford it. It's a mile and a half from where Pk and I live now (yes, DB will commute to SF but only 3 days a week. The other days she can telecommute.) It's in an intentional community with artists and children and gardeners (13 people total - including us). It's on ten acres of green mountain land, has a pool and a hot tub and outdoor showers. There is an established bonfire circle for rituals and redwood groves, a year-round creek, huge, fabulous flower and vegetable gardens. There is an amazing communal art studio (a round structure with a 15 foot dragon sculpted into the building), an outdoor kitchen - all tiled and beautiful with a huge outdoor brick oven covered in a copper sculpture of a dragon with the flames of the oven coming from it's nostrils! The cottage has a gorgeous view of vinyards and mountains, is under the redwoods but has plenty of sun through the shade, has a woodstove, a loft for Pk, a trampoline built into the front yard and a place for both DB's office and my quilt studio if we scale back our stuff AND a treehouse for Pk. They love dogs, don't watch tv, don't do drugs, have magical dragons and hearts everywhere AND are clothing optional. I cannot imagine in my wildest dreams anything more inspiring. They have others who want to live there (as you can imagine) so we just wait now.
pain
Posted on 2005.10.18 at 12:14
Current Mood: in pain
Current Music: head banging industrial
yee-ikes
it's anothr one of those fever, chills, vice grip head pain - so much pain that it makes me nauseous -days. flat out. cant get up - typing from bed. it's better now than a few hours ago - had to ask someone else to take pk to school. Brk is here now and I am having tea.
I think having ivig (yes- we found it but had to get it from two different distributers & the second kind was really rough on me) AND chemo in the same week was too much.
painpainpain
And I am being stubborn (no, not me!) about pain meds. Just refusing them because yes they will help the pain but at a cost to my well-being. they mess up my digestive system and wreak havoc and it just isn't worth it in the long run. so I ride out these crazy days in whattever ways I can.
we're giving up on looking for housing for a while- the magical dragon heart place wanted a single commuter as it turned out. very disappointing. and it's too much to do with being a good mother, planning the party and being sick. so we'll wait.
so grateful for Brk and DB - great to have them as a family. We make meals and watch family movies on Sunday nights. Brk bakes with him and DB and Pk carved pumpkins to great success. Pk has lots of love and time for play and homework and being outdoors. Last night Pk and I snuggled in the big outdoor chair and watched the almost full moon with rows of whispy clouds surrounding it. very rich.
k - just wanted to check in
thanks to those of you participating in my birthday - I appreciate it.
V
Not Right
Posted on 2005.10.24 at 13:12
Current Mood: useful
Current Music: Nobody Knows The Trouble I Seen
Oh yeah, Baby. it's a roller coaster ride. Sometimes I am up, sometimes I am down. Last week brought gripping headaches and fever and chills (again.) I broke down and took a pain med but it made me sick so I continue to avoid that. I also avoid the hospital. Sometimes that means taking my temp and saying "OK If it doesn't go down in 20 minutes, we'll go." and then praying like hell that it goes down! I HATE hospitals but I've been warned that if I get a blood infection, it'll kill me in 24 hours if untreated. Geez. They really know how to intimidate a gal!
I only have a moderate headache at the moment & even that would improve if I would get off my butt and take a handful of advil. No complaints. And, wiith the exception of a persistant but non-threatening cough - I am doing A-OK.
DB, Pk and I had a lovely time at L & L's party in Berkeley for the Portland gals. Wonderful to see so many workers. Laughed a lot. Talked a lot. And Pk was thrilled with both the fog machine and the whipped cream.
I got my first bill from the IVIG treatment that I got in the hospital last spring (before the allotments got too small to accommodate me there.) The drug alone - the IVIG - was $26,897 a DAY. For three days every three weeks. That's not even including the nursing care, the needles, the saline, the hepron, on and on and on. I wonder what it will cost at home?
DB - bless her soul - said (with earnest moral conviction) "That is not right."
Unbelievable. And yet true. That is three TIMES as much as the doctor's office (where the Federal government won't let me get treated) charges.
---------------
And, now, for a political ad:
If you live in CA, by the way, please vote no on Prop 78 and yes on 79.
-------
If any of you know H MacAllister from her fabulous queerfatrevue activism and are NOT hooked in to how you can help, let me know. I feel good about finally having a use for walking in that lonely place of only known survivor. It's been over 3 years since my first symptoms of PNP - in Dec. it'll be 3 years since the cancer diagnosis. No other known survivors over 2 years. I can safely say that I have some experience to share with her. And that I can be of use.
THAT is totally cool.
OK - I am off to vaccuum and quilt. And then to pick up Pk - who (surprisingly) has chosen to be the grim reaper for Halloween. Hmmm.
Love, V
PS OOoooo - I forgot to say that I am mighty excited about the party - people are figuring out costumes - flappers, gangsters, 1930s Hollywood / Greta Garbo, Okies from the dust bowl, dandy chaps who play polo...fun fun!
CA Voters
Posted private on 2005.10.24 at 13:44
Current Mood: patriotic
Current Music: America the Beautiful
CA Green Party sez:
NO Proposition 73 - Waiting Period and Parental Notification Before Termination of
Minor's Pregnancy.
This proposition places a notification requirement on doctors before an abortion procedure may be performed on a minor. Unless the minor applies for a waiver from a judge within the doctor's jurisdiction, the minor's parent or legal guardian must be notified before the procedure, and a 48-hour waiting period must be respected.
Greens advocate full access to safe and reliable reproductive information and services – including abortions. This should be true regardless of whether teens have been abused, are part of functional or dysfunctional families, or they live in rural or urban areas. This initiative is one more step in the process to limit women’s reproductive choices. All research shows that the availability of reproductive information and services lowers the incidence of teen pregnancies and abortions.
Proposition 74 - Public School Teachers. Waiting Period for Permanent Status.
This proposition would increase the probationary period for teachers from the current two years to five years. During probation, teachers can be dismissed without cause or reason.
School administrators have arbitrarily dismissed probationary teachers to intimidate new teachers from speaking up at meetings or engaging in union activity. This initiative appears to be designed to keep new teachers intimidated, inactive, and fearful of supporting their teacher’s union for a full five years. This would greatly weaken California’s teacher unions at a time when they (and all of public education) are under heavy fire from the Schwarzenegger administration.
Contrary to the inferences of Proposition 74’s advocates, permanent teachers do not have tenured status. They can be dismissed for a variety of reasons specified in the state education code. But permanent teachers have the right to due process; they cannot be dismissed without cause.
Proposition 75 - Public Employee Union Dues. Required Consent for
Political Contributions.
This initiative would, "Prohibit public employee labor organizations from using dues or fees for political contributions unless the employee provides prior consent each year on a specified written form" (from official summary).
The big businesses who funded Prop 75 want to weaken the labor movement on the political front, and they want to cut wages, pensions and other benefits for workers.
Currently, most unions offer an “opt-out” check box on their union form for those members who do not want their dues used for political purposes. This initiative would change this to an “opt-in” method that each member has to renew each year to support their union’s political activities.
In the interest of fairness, the equivalent for business would be to get the approval of stockholders for political donations that a publicly held corporation wants to make. But we’re not hearing this from the backers of Prop 75 even though businesses far outspend working people in political contributions.
NO Proposition 76 - State Spending and School Funding Limits.
This initiative cuts school funding by over $4 billion every year – $600 per student – leading to more overcrowded classrooms, teacher layoffs, and fewer textbooks and classroom materials. Specifically, it would tighten the cap on total state spending; end Prop 98’s protections for schools and colleges; and require automatic cuts across all social and civic services if tax revenues drop.
We think some things are too important to cut – things like education, health care, and fire protection. Schwarzenegger and other Prop 76 proponents want to impose required cuts to vital services while prohibiting cuts to special interests like the California Dried Plum Board and “pork barrel” road building projects.
Greens believe that fair taxation statutes will be needed to finance all state expenditures, and that legislators should be increasingly more responsible to the taxpayers for increasing Public Education spending in particular. Legislators should NOT be forced by Prop 76 to either reduce spending to match revenues, or to yield responsibility for needed spending reductions to the Governor.
???? Proposition 77 - Redistricting.
The Green Party could not come to agreement on a position. NO and NO POSITION were the predominant votes.
This initiative would create a constitutional amendment requiring a three-member panel of retired judges to draw congressional and state legislative districts, rather than the members of the current legislature. This would supposedly take the party politics out of redistricting. The redistricting would occur as soon as possible.
YES on 77 – Opposing this bill would put us in the same camp with Democrat and Republican incumbents who want to continue to run in their gerrymandered districts. This bill does nothing for Greens, and still makes it look like something is happening. No matter how they draw the districts, only the Republicrats can win due to the lock that corporate money and winner-take-all voting has put on elections.
NO POSITION on 77 – Other states have tried independent or bipartisan redistricting panels. These efforts did not result in a significant difference in which party gets elected in any given district. Passage of this proposition may bring some relief from the extremes of gerrymandering, but let's recognize that it will not be a significant improvement in democracy for Californians.
This is a distraction from real reform. The problem is single-member (one winner) districts using winner-take-all voting. There is no gerrymandering scheme that will accomplish fair and balanced representation of voters under such a system. The solution is multi-member districts using proportional representation voting. This provides majority rule and minority representation regardless of how boundaries are drawn.
NO Proposition 78 - Prescription Drug Discounts (business version).
YES Proposition 79 - Prescription Drug Discounts (consumer version).
Health Access California, and other labor and consumer groups, sponsored Prop 79, which would use the purchasing power of the State of California to negotiate prescription-drug discounts for millions of Californians that now pay retail prices for these medications. This measure is opposed by "Big Pharma," the prescription drug industry, which also sponsored a counter-measure, Prop 78.
The San Francisco Chronicle (July 13, 2005) ran a front-page story listing 12 drug companies which have contributed $43 million since June 16 for this battle. Pfizer, Merck, and GlaxoSmithKline each contributed $8.5 million to their industry's "California Initiative Fund."
The Alliance for a Better California (the coalition of nurses, teachers, state employees, etc.) also worked to put Prop 79 on the ballot. Much of the language came from a measure that passed the legislature last year but was vetoed by Governor Schwarzenegger.
The major difference between these Props is that Prop 79 is mandatory for the drug companies. Firms that don't provide medicines under this program for the same price they charge MediCal could be barred from selling to the State's MediCal program. Under Prop 78, drug company participation is voluntary.
????? Proposition 80 - Electric Service Providers. Regulation.
The Green Party could not come to agreement on a position.
This initiative stems from a bill passed in the CA legislature (AB 2006) in 2004 that would have required utilities and other power suppliers to plan rationally for the future by re-regulating energy in California. Governor Schwarzenegger vetoed it, preferring "competitively priced" electricity over regulated electricity, even if residential rates go up in the process. So, TURN (The Utility Reform Network) is taking the bill to the voters.
YES on 80 – Blackouts due to power shortages and market manipulation did not exist in California prior to deregulation (all previous blackouts resulted from transmission or distribution outages). This proposition re-establishes legal requirements that were abandoned during deregulation. “Integrated resource planning” prohibits large commercial customers from jumping back and forth between “direct access” (power from independent providers) and utility services, thus providing more certainty to utilities in their purchase planning. There are also requirements for “adequate reserves” to prevent blackouts due to power “shortages,” as well as restoring obligations on corporations supplying energy to California - PG&E, SCE and SDG&E - to serve California consumers rather than out-of-state energy suppliers.
Other favorable aspects of this initiative are the requirement for all retail electric sellers to increase renewable energy resource procurement by at least 1% each year, and moving up the date of the state's 20% renewable energy requirement from 2017 to 2010 (decreasing our dependence on expensive fossil fuels). Similarly, “first priority for energy efficiency” means efficiency programs will be pursued before new power plants are built.
NO and NO POSITION on 80 – It foolishly gives even more authority to the CPUC, an agency frequently criticized by consumer groups. It locks communities into long term energy contracts with private corporate energy providers. It does allow Community Choice Aggregation programs, but the language is not clear and comprehensive so it could seriously undermine a community’s ability to start a CCA.
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December 2005 posts from livejournal
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Why?
Posted on 2005.12.06 at 17:17
Current Mood: drained
Current Music: Fighter, Christina Aguillera
I feel as if I could just write and write and write. There is so much to say. It's been a terribly long day and it's not at all over. Pk is on his way home and we have homework and costumes and practicing of his lines for the Nutcracker and dinner and getting ready for bed routines.
Today started off with a jolt and 10 ounces of white chalk contrast (I plug my nose while I drink and that helps.) I drove Pk to school down the mountain and headed to the CT scan imaging office where I drank more chalk and got my scan - with and without iodine. The technician was a 40-something year old surfer who was entertaining. When that procedure was over, I rushed over to the gynacologist's for a repeat pap smear because my last one had inconclusive results. After the exam, the doctor told me that she wanted to order an ultrasound. I wasn't thrilled to have another medical appt but said that if it could be before noon, I would agree. So - off to visit Heather Macallister in the hospital (more on my role with Heather later) where I ran aound making sure that she had everything that she needed and that the medical questions would be answered and that she was getting good care. Back to the gynocologist's office for a lovely wet visit with the Ultrasound Technician and her KY jelly.
I am thrilled to say that the preliminary results are FABULOUS. She could find no evidence of the cancer that had been seen in my last ultasound (granted that was back in 2003 but still - nothing is nothing.) We still have to wait for the CT results but that was a very good bit of news to get, I have to say. I am thrilled.
After the ultrasound, I went back to the hospital and went with Heather from one of her tests to her room for a rest. There is a lot to say about that. I know all too well how much it SUCKS to be throwing up every spoonful of water. God - it is so horrible. And to witness it is just as bad when I KNOW what it feels like. There is nothing I could do but sing her the "River of Birds" song.
My visit was short though. I had to race back up the mountain to meet Mary, the Home Health Care nurse who was waiting to give me the IVIG infusion. We've taken what was a 7 hour infusion and gotten it down to 3 hours. During the infusion I was able to ask questions about hspice practices, post an update onto Heather's BB, call one of our most recent rental choices (a house that we looked at and didn't like but they liked us) and tell him that WE FOUND A NEW HOME! We found a beautiful house in Felton (north of Santa Cruz) and we take possession on December 15th and I'll write more later on it. I was also able to receive Bit who just flew from Portland, OR to see Heather and will be staying here and to give Brook the car to go get Pk. They bought some groceries and are on their way home now.
OK - there is probably time to explain Heather. She is a SF woman with ovarian cancer (and soooo much more, if you know her!) - end stage at this point. And she doesn't want to give up. Last week she and her care team in SF decided to sign on to hospice - which means giving up medical intervention. But then she called me over the weekend and asked if my doctors had any other solutuions or might be able to offer a second opinion. I said that I would ask. When I did, they said to bring her in and that they would see. When I told Heather, she wanted me to come get her so - yesterday - that's what I did. I went to SF, brought her to my oncologist's in Santa Cruz (no small feat), brought her to the hospital when she said that she wanted to go. It was very hard because I can see that she is sick - very sick. And I have been as sick. I have been as dehydrated and miserable. And, to be honest, I didn't want to keep fighting at that point. I wanted OUT of the hospital. But she wanted to go in. So we went. And it's awful to watch. I just think she would be so much more comfortable in her own home with her friends and family there. She could die in peace instead of fighting to prolong her life with poisons and tests and tubes and the HELL of hospitals.
The juxtaposition of the picture of me running around to all of my medical appointments today, iPod blaring music about being a fighter and having the excellent good fortune to see that clean ultrasound against the picture of Heather, slowly shifting from xray table to wheelchair to sink, puking along the way, whispering "I'm OK. I can get it. Thanks for stopping by."
Why?
It really isn't fair.
A trend
Posted on 2005.12.08 at 08:05
Current Mood: vibrating
Current Music: The Russian Dance, Tchaikovsky
OK OK so I guess cutting and pasting my letters to friends and family IS becoming a trend. but really - when in a hurry - it's better than nothing. And I guess I can elaborate when I have time. For now there is Parker's Nutcracker costume and pleas to medical bill collectors and packing to do. Here's a quick email to my twenty-something sister Kat who lives in London and plans to visit soon:
Happy happy happy birthday! January 1st sounds fine - SFO is fine - and what is ironic is that Cayenne might be visiting the States at that point so you might actually be able to see her. cah-razy.
I am so so excited about the new house!!! I was up at 3 AM making a floor plan (to 1/4" scale based on meticulous measurements taken last night!) and today during my IVIG treatment I'm going to make little cut-out scale furnature to plan the placement of everything! I am SUCH a homemaker geek.
CT results should be coming in soon - and I am hoping that I shall be kicked out of the
Cancer Society. I never wanted to be part of that club anyway. I really do want to be in remission. Not that I've let chemo take me down or anything but - you know - there are other ways to spend my time.
OK - I'm off to craigslist to find a washer dryer stackable front loader. Bless Craig and his little list.
Love,
Sistah V
Felton, Our New Town
Posted on 2005.12.09 at 18:58
Current Mood: incredulous
Current Music: Our House, Crosby Stills Nash & Young
Here is a promotional blurb about Felton, our new community:
If Hollywood was to choose the ideal place for a story about independent mountain people, then the tiny towns of the San Lorenzo Valley would win in a heart beat. That's why it's no surprise that several movies have been filmed here against the backdrop of steep hillsides, lush meadows, and forests that nearly reach the clouds. Through it all, the San Lorenzo River makes its lazy journey from the summit to the sea.
A century ago these hills echoed with the rasping sounds of bucksaws, as loggers harvested millions of redwoods and Douglas fir to feed the housing needs of a growing country. Many of the best areas were clear-cut and left to regenerate on their own.
Fortunately, they did, giving us one more chance to appreciate and protect what nature put here. San Lorenzo Valley people are like that, too - strong and resilient, independent yet living in tight communities. These are sophisticated people who enjoy a quiet way of life. Many of them spend their workdays as engineers, technicians, and managers in the high-tech world of Silicon Valley. But they return home to the quiet of the forests and the small towns they love.
Their fine tastes are obvious. Browse through any of the small gallery shops along Highway 9, such as The Country Home, and you'll find the handiwork of many gifted local artisans. In many cases, their names are recognized on a regional and national level.
Valley restaurants reflect a broad choice of menus, from the upscale to the "down home." You'll find no cookie-cutter hostels in these parts, either. Instead, find respite in the Alpine motif of the Tyrolean Inn, the beautifully-appointed condos at the Boulder Creek Golf and Country Club, Brookdale Lodge "where the river runs through", or any one of the historic riverside lodges that have welcomed visitors for decades.
California's oldest state park - Big Basin - comprises much of the landscape, along with Henry Cowell Redwoods State Park, Fall Creek State Park, and Loch Lomond Recreation Area with its placid lake. For a really nostalgic view of the redwoods, hop aboard Roaring Camp's antique steam train for a ride through the ancient forest to a natural cathedral atop Bear Mountain.
Impressive? You bet! But it's just part of the everyday scene in Boulder Creek, Brookdale, Ben Lomond and Felton - the little gems of the San Lorenzo Valley.
------------
The village of Felton is a mile from our house. We love the little coffee shop, The White Raven, with it's pagan pentacle wind chimes and big overstuffed chairs in the cool bookstore. We love the locally owned grocery store with the really good produce. We love the feed store and the little local restaurants. There is even a small tatoo shop for when my platelets are higher (and I have saved up enough money!) But the best is the incredible Henry Cowell State Park and the Felton Covered Bridge Park. Right near our house!! So many places to walk and hike and run and scooter and bike!
And the house is so amazing! I mean we looked at so many houses over the last few months. Anything in our price range was in someone's basement or was off the electricity grid or was surrounded by junked cars and boats or on the side of steep grade hills with no place for Parker to play. Anything good would have been shared with people we didn't know or had all three of us sharing a room. And this is it's own house. It fits for everyone. Pk has his own room, there is a place for my quilt studio, HUGE front AND back yards with the birdfeeders and planting beds ready to be filled. There is a garage for Brook to live in and a place for Amica to run free. The kitchen is big and bright. Dang! We are so so so lucky. AND it includes all the utilities! If the landlord doesn't end up dying in a freak drowning accident, we're all set!!
To see a few pictures: http://lumigenic.com/photo/articles/HistoryWeb/Felton.html#town
Love, V
CT Results
Posted on 2005.12.12 at 22:06
Current Music: Anticipation, Carly Simon
The results are in.
Irony or Coincidence?
Posted on 2005.12.12 at 22:08
Current Mood: disappointed
Current Music: One Tin Soldier, Peter, Paul & Mary
The irony is not lost on me. I can't help but notice, as I sew the gold buttons onto each of the miniature Nutcracker Soldier costumes that I've just finished for the third graders, that ** I ** am the one making the army costumes. Me -the peace-loving mother who already has a bulging Consciencous Objector file for Pk in case there is a draft in some war. Ten years from now.
As I sat at the sewing machine today, attaching the gold trim, making the epulets just right, I thought to myself: is it irony or is it coincidence that I am making these today? For today I got the CT results back. And it is crystal clear that I am still in the battle.
I guess the Cancer Society wants me as a member even if I am ready to resign.
Dani and I tried to hide the depth of our disappointment. We cheered each other up with consolation phrases like: "Well, it's not getting worse." and "Everything else is going great in our lives - so really - who can complain, right?" The lesions in my lungs are still being in measured in centimeters in the left lobe and millimeters in the right. The good news is that the smaller lesions are no longer present and the large lesions, although slightly smaller, have lost some density. The cancer in the abdomen remains about the same size as it was in the last CT scan despite poisoning myself with chemo, despite the fact that I've been eating more vegetables than I ever have in my whole life, despite the glorious sex home-infusions, despite my fully visualizing no more cancer (it's all in the attitude -everyone says so) . These results are definately not the "You are in remission" that I genuinely believed I would be hearing.
And so it is with disappointment that I pull up my skirt (as my sister says) and keep up the good attitude (as my father says) and carry on the fight. I really am a peace-loving gal. I just want to get on with my life and quilt and be a good mother and partner and not have to be a soldier. I don't like the weapons of mass destruction. I don't like the on-guard feeling that is necessary with low white counts. I don't want to keep wondering what the next scan will say and what the battle plan will be.
The play is on Thursday and Friday. The Nutcracker Prince and his fashionably dressed army will fight the Mice in an epic battle ballet. Dani and Brook and I will be there to watch them. We'll be there to watch Pk dance the Russian Dance and to speak his first dialogue lines. A year ago I could not have seen him or sewn the costumes. Two years ago it was hard to imagine I could possibly survive my broken heart. Three years ago, this week, I had just been diagnosed with cancer and the realization that I would probably never make it to Parker's third grade play hadn't quite sunk in. So, really, who can complain, right?
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Why?
Posted on 2005.12.06 at 17:17
Current Mood: drained
Current Music: Fighter, Christina Aguillera
I feel as if I could just write and write and write. There is so much to say. It's been a terribly long day and it's not at all over. Pk is on his way home and we have homework and costumes and practicing of his lines for the Nutcracker and dinner and getting ready for bed routines.
Today started off with a jolt and 10 ounces of white chalk contrast (I plug my nose while I drink and that helps.) I drove Pk to school down the mountain and headed to the CT scan imaging office where I drank more chalk and got my scan - with and without iodine. The technician was a 40-something year old surfer who was entertaining. When that procedure was over, I rushed over to the gynacologist's for a repeat pap smear because my last one had inconclusive results. After the exam, the doctor told me that she wanted to order an ultrasound. I wasn't thrilled to have another medical appt but said that if it could be before noon, I would agree. So - off to visit Heather Macallister in the hospital (more on my role with Heather later) where I ran aound making sure that she had everything that she needed and that the medical questions would be answered and that she was getting good care. Back to the gynocologist's office for a lovely wet visit with the Ultrasound Technician and her KY jelly.
I am thrilled to say that the preliminary results are FABULOUS. She could find no evidence of the cancer that had been seen in my last ultasound (granted that was back in 2003 but still - nothing is nothing.) We still have to wait for the CT results but that was a very good bit of news to get, I have to say. I am thrilled.
After the ultrasound, I went back to the hospital and went with Heather from one of her tests to her room for a rest. There is a lot to say about that. I know all too well how much it SUCKS to be throwing up every spoonful of water. God - it is so horrible. And to witness it is just as bad when I KNOW what it feels like. There is nothing I could do but sing her the "River of Birds" song.
My visit was short though. I had to race back up the mountain to meet Mary, the Home Health Care nurse who was waiting to give me the IVIG infusion. We've taken what was a 7 hour infusion and gotten it down to 3 hours. During the infusion I was able to ask questions about hspice practices, post an update onto Heather's BB, call one of our most recent rental choices (a house that we looked at and didn't like but they liked us) and tell him that WE FOUND A NEW HOME! We found a beautiful house in Felton (north of Santa Cruz) and we take possession on December 15th and I'll write more later on it. I was also able to receive Bit who just flew from Portland, OR to see Heather and will be staying here and to give Brook the car to go get Pk. They bought some groceries and are on their way home now.
OK - there is probably time to explain Heather. She is a SF woman with ovarian cancer (and soooo much more, if you know her!) - end stage at this point. And she doesn't want to give up. Last week she and her care team in SF decided to sign on to hospice - which means giving up medical intervention. But then she called me over the weekend and asked if my doctors had any other solutuions or might be able to offer a second opinion. I said that I would ask. When I did, they said to bring her in and that they would see. When I told Heather, she wanted me to come get her so - yesterday - that's what I did. I went to SF, brought her to my oncologist's in Santa Cruz (no small feat), brought her to the hospital when she said that she wanted to go. It was very hard because I can see that she is sick - very sick. And I have been as sick. I have been as dehydrated and miserable. And, to be honest, I didn't want to keep fighting at that point. I wanted OUT of the hospital. But she wanted to go in. So we went. And it's awful to watch. I just think she would be so much more comfortable in her own home with her friends and family there. She could die in peace instead of fighting to prolong her life with poisons and tests and tubes and the HELL of hospitals.
The juxtaposition of the picture of me running around to all of my medical appointments today, iPod blaring music about being a fighter and having the excellent good fortune to see that clean ultrasound against the picture of Heather, slowly shifting from xray table to wheelchair to sink, puking along the way, whispering "I'm OK. I can get it. Thanks for stopping by."
Why?
It really isn't fair.
A trend
Posted on 2005.12.08 at 08:05
Current Mood: vibrating
Current Music: The Russian Dance, Tchaikovsky
OK OK so I guess cutting and pasting my letters to friends and family IS becoming a trend. but really - when in a hurry - it's better than nothing. And I guess I can elaborate when I have time. For now there is Parker's Nutcracker costume and pleas to medical bill collectors and packing to do. Here's a quick email to my twenty-something sister Kat who lives in London and plans to visit soon:
Happy happy happy birthday! January 1st sounds fine - SFO is fine - and what is ironic is that Cayenne might be visiting the States at that point so you might actually be able to see her. cah-razy.
I am so so excited about the new house!!! I was up at 3 AM making a floor plan (to 1/4" scale based on meticulous measurements taken last night!) and today during my IVIG treatment I'm going to make little cut-out scale furnature to plan the placement of everything! I am SUCH a homemaker geek.
CT results should be coming in soon - and I am hoping that I shall be kicked out of the
Cancer Society. I never wanted to be part of that club anyway. I really do want to be in remission. Not that I've let chemo take me down or anything but - you know - there are other ways to spend my time.
OK - I'm off to craigslist to find a washer dryer stackable front loader. Bless Craig and his little list.
Love,
Sistah V
Felton, Our New Town
Posted on 2005.12.09 at 18:58
Current Mood: incredulous
Current Music: Our House, Crosby Stills Nash & Young
Here is a promotional blurb about Felton, our new community:
If Hollywood was to choose the ideal place for a story about independent mountain people, then the tiny towns of the San Lorenzo Valley would win in a heart beat. That's why it's no surprise that several movies have been filmed here against the backdrop of steep hillsides, lush meadows, and forests that nearly reach the clouds. Through it all, the San Lorenzo River makes its lazy journey from the summit to the sea.
A century ago these hills echoed with the rasping sounds of bucksaws, as loggers harvested millions of redwoods and Douglas fir to feed the housing needs of a growing country. Many of the best areas were clear-cut and left to regenerate on their own.
Fortunately, they did, giving us one more chance to appreciate and protect what nature put here. San Lorenzo Valley people are like that, too - strong and resilient, independent yet living in tight communities. These are sophisticated people who enjoy a quiet way of life. Many of them spend their workdays as engineers, technicians, and managers in the high-tech world of Silicon Valley. But they return home to the quiet of the forests and the small towns they love.
Their fine tastes are obvious. Browse through any of the small gallery shops along Highway 9, such as The Country Home, and you'll find the handiwork of many gifted local artisans. In many cases, their names are recognized on a regional and national level.
Valley restaurants reflect a broad choice of menus, from the upscale to the "down home." You'll find no cookie-cutter hostels in these parts, either. Instead, find respite in the Alpine motif of the Tyrolean Inn, the beautifully-appointed condos at the Boulder Creek Golf and Country Club, Brookdale Lodge "where the river runs through", or any one of the historic riverside lodges that have welcomed visitors for decades.
California's oldest state park - Big Basin - comprises much of the landscape, along with Henry Cowell Redwoods State Park, Fall Creek State Park, and Loch Lomond Recreation Area with its placid lake. For a really nostalgic view of the redwoods, hop aboard Roaring Camp's antique steam train for a ride through the ancient forest to a natural cathedral atop Bear Mountain.
Impressive? You bet! But it's just part of the everyday scene in Boulder Creek, Brookdale, Ben Lomond and Felton - the little gems of the San Lorenzo Valley.
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The village of Felton is a mile from our house. We love the little coffee shop, The White Raven, with it's pagan pentacle wind chimes and big overstuffed chairs in the cool bookstore. We love the locally owned grocery store with the really good produce. We love the feed store and the little local restaurants. There is even a small tatoo shop for when my platelets are higher (and I have saved up enough money!) But the best is the incredible Henry Cowell State Park and the Felton Covered Bridge Park. Right near our house!! So many places to walk and hike and run and scooter and bike!
And the house is so amazing! I mean we looked at so many houses over the last few months. Anything in our price range was in someone's basement or was off the electricity grid or was surrounded by junked cars and boats or on the side of steep grade hills with no place for Parker to play. Anything good would have been shared with people we didn't know or had all three of us sharing a room. And this is it's own house. It fits for everyone. Pk has his own room, there is a place for my quilt studio, HUGE front AND back yards with the birdfeeders and planting beds ready to be filled. There is a garage for Brook to live in and a place for Amica to run free. The kitchen is big and bright. Dang! We are so so so lucky. AND it includes all the utilities! If the landlord doesn't end up dying in a freak drowning accident, we're all set!!
To see a few pictures: http://lumigenic.com/photo/articles/HistoryWeb/Felton.html#town
Love, V
CT Results
Posted on 2005.12.12 at 22:06
Current Music: Anticipation, Carly Simon
The results are in.
Irony or Coincidence?
Posted on 2005.12.12 at 22:08
Current Mood: disappointed
Current Music: One Tin Soldier, Peter, Paul & Mary
The irony is not lost on me. I can't help but notice, as I sew the gold buttons onto each of the miniature Nutcracker Soldier costumes that I've just finished for the third graders, that ** I ** am the one making the army costumes. Me -the peace-loving mother who already has a bulging Consciencous Objector file for Pk in case there is a draft in some war. Ten years from now.
As I sat at the sewing machine today, attaching the gold trim, making the epulets just right, I thought to myself: is it irony or is it coincidence that I am making these today? For today I got the CT results back. And it is crystal clear that I am still in the battle.
I guess the Cancer Society wants me as a member even if I am ready to resign.
Dani and I tried to hide the depth of our disappointment. We cheered each other up with consolation phrases like: "Well, it's not getting worse." and "Everything else is going great in our lives - so really - who can complain, right?" The lesions in my lungs are still being in measured in centimeters in the left lobe and millimeters in the right. The good news is that the smaller lesions are no longer present and the large lesions, although slightly smaller, have lost some density. The cancer in the abdomen remains about the same size as it was in the last CT scan despite poisoning myself with chemo, despite the fact that I've been eating more vegetables than I ever have in my whole life, despite the glorious sex home-infusions, despite my fully visualizing no more cancer (it's all in the attitude -everyone says so) . These results are definately not the "You are in remission" that I genuinely believed I would be hearing.
And so it is with disappointment that I pull up my skirt (as my sister says) and keep up the good attitude (as my father says) and carry on the fight. I really am a peace-loving gal. I just want to get on with my life and quilt and be a good mother and partner and not have to be a soldier. I don't like the weapons of mass destruction. I don't like the on-guard feeling that is necessary with low white counts. I don't want to keep wondering what the next scan will say and what the battle plan will be.
The play is on Thursday and Friday. The Nutcracker Prince and his fashionably dressed army will fight the Mice in an epic battle ballet. Dani and Brook and I will be there to watch them. We'll be there to watch Pk dance the Russian Dance and to speak his first dialogue lines. A year ago I could not have seen him or sewn the costumes. Two years ago it was hard to imagine I could possibly survive my broken heart. Three years ago, this week, I had just been diagnosed with cancer and the realization that I would probably never make it to Parker's third grade play hadn't quite sunk in. So, really, who can complain, right?
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