pretty pretty prettyness

HAH. Radiation Tattoos... I haz em.

THIS GUY!!!!

IS FINALLY IN REMISSION FOR THE FIRST TIME IN 5 YEARS!!

I feel overwhelmed with joy and relief and tears. Chris has such a great attitude and energy and never let the cancer (or the treatment, which can be just as rough) keep him down. I was so lucky to be able to have a coffee with him a while back and feel that positive energy in person. Chris, I am so happy for you. I hope this remission sticks for a verrrrrry long time! Celebrate!

Love

Tiff

Spring Cleaning for My Guts

Starting week 2 of going fully vegan and limiting processed food and sugar. So far so good...

Want to conquer my habits and restore my internal temple!

NYC bound

Writing this from the train to New York. Land of dreams. Home of some of the most formative experiences of my lifetime. I return often but somehow the feelings haven't diminished: I miss it but I am glad I don't live there anymore.

I have great memories: I remember 111th and Broadway, I remember Columbia, I remember moving to Brooklyn and finding an apartment on Graham and Ainslie. I remember hanging up my keys next to Dani's, making hummus with Aaron, going to happy hour after happy hour. Grad school "prom," Halloween in Red Hook, riding my bike along the East River. I remember Barcade, Milon, Polished salon, going to NBC to visit Dani, working at Legal Aid, working at the Women's Center, having a kinda crazy life that was kinda working for me, having lots of dates, riding the subway...

I am always here for work but this time I have a couple nights this week that I could have free and I am wondering what I would like to do with my time. A few people want to see me so I will have to figure that out, and I would really like to go to Milon for dinner one of the nights and hang around the east village for a drink...

Cheesin'

Met with staffers from the White House Domestic Policy Counsel today to talk about continued presence, detention of victims, and law enforcement training. Nobody told me I was supposed to look like I'm taking a gangsta family photo, and I am cheesin' out...

Kiiiiinda love it.

nailed it!

http://www.chopra.com/files/newsletter/Mar12/Mar12-Life.html

http://zenhabits.net/embrace-chaos/



On taking an action, not worrying about the outcome, but rather taking it to fill an internal need to say what's on your mind, to act, to do something and not just sit there, regardless of consequences...

"Knowing this we take a step in the direction that seems to be most evolutionary for us and trust that either we will get what we want or we will learn something of great value."

3 Part Stress Plan

I think the end of my stress is in sight... I knocked out a lot on my to do list yesterday and today by trying a new method known as ONE THING at a time. No more multitasking. Duh, this is zen 101. Yes, I am a badass, but the work is wayyy harder than it has ever been up to now. I can handle it, I just can't do it the same way I have been doing it. I think this is the crucial realization I've had today.

Also, just for good measure, seeing a therapist today for a quick check in on how I am dealing with stress (and my relationships, since that never hurts). Don't know if I will keep going, but honestly I think 90 percent of people should visit a therapist at least a few times in their lives. As a social worker myself, I know how helpful it can be for someone to just spill their guts to someone that doesn't know/judge them- even if the other person has zero advice. There is nothing that amazing about bottling things up and taking them out on other people, and it's batshit (in my case) to let the stress make you feel depressed and crazy sensitive (even more than normal). I have lost my edge, if I ever had one, and need to get my shit together. 2-3 visits ought to do the trick unless this dude is a guru and can help me learn how to make myself run a marathon or something amazing... .

The final point on this three-part stress strategy is going to my 7th yoga class at Stroga. Such a good call on that Groupon... gonna be sad when I run out of passes! I mean... look at it:

Socrates, Insomnia

I have been feeling so frustrated lately. I haven't been sleeping well, I have been drinking too much, I have been eating too much, I have been going to the gym like crazy just to get the steam off of me. Work is overwhelming- so many new and exciting projects that I have always wanted to do are finally happening and yet I can't get excited, my personal time is sometimes just as difficult and feels so uncertain some days, and sometimes like it could be a figment of my imagination, my health also feels uncertain and fleeting. I am exercising and taking vitamins trying to keep from getting sick again, knowing deeply in my zen-est heart that I cannot control the future, but for some reason thinking if I just try harder at life, I could.

I want to be able to be myself and have all these faults and still know that my bosses, my colleagues, my friends, my boyfriend, my doctors, etc. accept me and think I'm great even when I fuck up. I feel pressure to be the best, most entertaining, beautiful, vegetable eating, deadline meeting, version of myself all the time. Perhaps the hardest part is that I enjoy being my best, I love being on top, being in charge, having my shit together, so I might be tougher on myself than anyone else. For two years, I spent all my time just figuring out how to stay alive, literally. How do I keep my heart beating and my blood cells from failing? How do I keep the pain in my bones from crippling me? Now that I am healthy again, I have this overwhelming urge to make up for those two years of "lost time." It's killing me a little bit, which is sort of ironic.

What is the line between my best effort every day, and driving myself bonkers with perfectionism in my life? I can't make people say/do the things I wish they would; I've been allowing reality to grind against expectation without slowing the wheels.

I keep thinking of this idea that I learned in one of my college philosophy classes - Socrates said "i only know that I know nothing." Profound. I want to clear my head of everything that is hurting me and try to keep an open heart and mind, finding comfort in the uncertainty like Socrates.

taking care of my space

Whenever I feel upset, taking care of myself and my space makes me feel better. Luckily I already happened to have plans to go to IKEA today with Ms. Thing and her new roomie Emily! We finished in like 45 minutes with time to spare for $1 ice cream, pretty amazing.

So, I got a curtain to divide my living room a little from my workspace, and I finally broke down and got a coffee table... need somethin' to put my feet on! :D

Oh, also went to Sam's Club with her and got something called PopFizz which appears to be a combo of Emergen-c and 5 hour Energy and turns your water into an orange soda with 500% Vitamin C and 40,000% B-12. Watch out world.

Newsflash: Life after Cancer Treatment Sometimes Sucks

This article was very accurate: http://www.salon.com/2012/02/20/now_what_life_after_cancer_treatment/

Here's the part that really spoke to me:

That’s why it’s bittersweet to move on to the next part. “I think there’s a huge rush of the tide to get you back as though nothing happened. To reassemble the picture that you had before,” says Anne. “People think that must be what you want, you must want to forget this. The big mistake is that it’s forgettable. Or that there’s an end to it. There’s no end to it.” And as Martha says, “The doctors will say, ‘Oh, you’re good. Go enjoy your life.’ But you don’t stop having had cancer once treatment is over.”

Cancer is part of me now. It’s part of all of us who’ve experienced it, whether we call ourselves survivors or continue to grope, as I do, for a word that makes sense of this new place. How can I call myself a “survivor” when I will spend the rest of my life monitored and tested, a veteran who knows all too well that another deployment could be as close as the next CT scan? We cancer vets live daily with our cancer — in the scars on our bodies, the memories of the people who were kind when we needed help, and the way that we can never again take for granted what a gift it is to make plans.

inevitable.

I haven't eaten taco bell (or any fast food really) in a while now, but this is just sort of awesome enough to feature here. Man oh man did I used to love doritos sandwiches, this is 10x better!

danger zone

You're welcome, world.

Barbara Bush (!!!): "Healthcare Should be a Right"

This clip from Fox was actually not vomit-inducing. Thanks for the link, grandma. It reinforces what I think about the power of experience and hearing stories. Barbara Bush exposed herself to something and came out an activist. Everyone who argues against things like minimum wage, healthcare, birth control, etc. without thinking about the human beings affected should meet people whose lives were harmed by not having access to those things. Think of how many converts to social justice movement we could have with the power of storytelling!

Presenting at a Human Trafficking Conference Next Week and other thoughts on HT

So, I am doing this event next week at Catholic University and I am super excited about it because it's one of the few I get to do specifically for social workers. I am going to be discussing some common perceptions about immigration, trafficking, and migration, as well as covering some best practices for the immigrant survivor population. I only have one hour so I won't get to dig into the context as much as I want to, but I am going to be providing some handouts with additional resources, particularly the NASW code of ethics which requires us to be advocates against immigration enforcement measures that harm families, as well as some guidelines for cultural competency.

One of my challenges in agreeing to lead this workshop will be to navigate the tension between the broad knowledge base of the DC human trafficking task force around issues of commercial sexual exploitation of minors, and the concurrent lack of knowledge around issues of trafficking for other purposes- particularly for labor in those industries that are saturated with immigrant workers. While the discussions are sometimes frustrating, occasionally opportunities come up for this sector to be highlighted, like this conference . I was so heartened today when the chair of the task force re-affirmed his commitment to my particular workshop and even suggested the overall panel be extended so the "captive audience" could hear my 5 minute overview before breaking out for workshops.

The icing on the (Valentine's) cake was a presentation by one of the chief DOL Wage and Hour folks who visited the task force today and shared the WHD approach to investigations and explained the scope of their authority. I was disappointed that the conversation slanted toward child peddling at the end given the enormity of the problems in restaurants and domestic servitude, but having already asked a pointed question about collaboration with MPD vice detectives, I felt like asking another question would be exasperating to the rest of the group. If the group were more mixed, or we had more time, I think would have asked how they investigate domestic worker cases- given that one of the strengths of DOL investigations is that they can enter any workplace without a warrant under the authority of the Fair Labor Standards Act, but this coverage doesn't apply to private households. In fact, I would still love to ask someone from DOL to explain how they provide those workers with equal investigatory protection given this limitation... but that's for another day.

Next week I will be excited to present some new materials/slides with this small audience and see how some of it plays out. I also made the decision to try and reciprocate the warm welcome I received from the chair of the task force (who is an Assistant US Attorney) and try to actually show up to future meetings rather than sending my intern in my place. If he wants more labor representation, and I want more labor representation, then it appears that I need to step up and play that role.

Port Removal Day

I have been in and out of being a little bit high on drugs for the past three days (sudden terrible cold), so forgive this ramble, but I am happy.

Today I faced one of my biggest fears-- I got my MediPort removed. They wouldn't let me keep it, but they showed me, it's this small heart shaped thing with a tube that went up my neck. They told me mine was even smaller coz I'm a "small individual." whatever that means.

Apparently placing it is super tricky, but pulling it out isn't so bad. They put me under twilight sleep and it felt AMAZING. I love that stuff holy cow. But it wasn't enough and I did have to ask for more during (which they gave me very quickly- thank you nurses and your liberal use of drugs). But, I did cry my eyes out when they were giving me the numbing shot, and screamed "it hurts, it hurts it hurts" and bawled and then apologized for bawling but the twilight sleep stuff had made me unable to control my emotions, hahah. Anyway, after that I just tried to sleep. and then it was over. I relaxed for a while in post-op, then Phyllis came (with coffee!), and took me home. I checked in around 8AM and was home around 12:45PM. Not too bad.

I slept for awhile longer, woke up and got a bagel delivered (thank you for existing, GrubHub), and slept some more.

I just want to say that my BF is the sweetest thing ever and has been so nice to me today even though I know he really wants to tell me to buck up and be tough-- he hasn't said it at all today. Just that he wishes he was here and that he loves me and I'm cute. Just what I needed. And that is awesome.

So, even though I am hacking up a lung, am throbbing with pain in my chest from getting cut open, I am overwhelmed with emotions about what it means to no longer have a port and thus no more easy access to my bloodstream if it is needed and what that means for future treatment... and the most cogent thoughts I can produce are currently going into this blog and not the pile of work I have on my desk... well, despite all that? I love life and I am happy.

Happy End of January Y'all!

1,084 miles is so far

we are alive in the present moment, the only moment there is for us to be alive

We can smile, breathe, walk, and eat our meals in a way that allows us to be in touch with the abundance of happiness that is available. We are very good at preparing to live, but not very good at living. We know how to sacrifice ten years for a diploma and we are willing to work very hard to get a job, a car, a house, and so on. But we have difficulty remembering that we are alive in the present moment, the only moment there is for us to be alive.

THICH NHAT HANH, Peace is Every Step

Thursday morning at 8:30AM EST I will get the 1 year scan results. Not falling apart. Staying present. Staying present. This is the only moment there is to be alive.

1 Year Post SCT Scan

Tomorrow morning at 11AM I will be sucking down room temperature blueberry barium smoothie, getting my veins injected with radioactive isotopes, and trying not to move for 45 minutes in the tiny hole of the pet-ct scanner. This will be my 8th PET scan, and I am pretty much a pro at it now.

I remember to:

1. Limit carbs and anything that will spike my blood sugar the day before (the isotopes find metabolic activity)

2. Wear a sports bra and no metal in my clothes (getting an excuse to wear fleece hoodies and yoga pants out in public = kind of an awesome consolation prize), that way I don't have to change clothes in the locker room and put them in the weird plastic bags with drawstrings.

3. Order a cab (luxury!) and take a relaxing bath the night before to try and relax my mind and body before the test

4. Most important: remember the zen things I've learned over the last two and a half years since I was diagnosed. I can't predict the future, I can't change the past, I can't even control the present. I can only wake up every morning and try to make each day healthy, productive, and beautiful. The week between getting the scan and getting the results is so hard on me, I find it difficult to concentrate on anything else but wondering if my entire life is about to fall apart again, but I do my best to be zen.

I am not afraid of death anymore, but I am actually terrified of more treatment. I can't express how awful it was. I think your brain protects you from feeling the emotions of being so sick until you are really feeling better. It's almost like my body knew I had to fight it out and pretend I was feeling fine/strong, until I actually was. Now that my life is pretty much put back together (and actually better than before because my heart is happy), the thought of losing it all again is so much worse but it's just now hitting me.

I am trying not to look at stats because for my particular set of risk factors, they aren't really that good. But, a clear scan tomorrow could be huge. It's a year after SCT and that's a good sign, as the most difficult relapses occur within the year. I always say that I am just waiting til that 5 year scan, then I will have peace of mind.

But I think in the last few months especially, I've realized that I don't want peace of mind if it means not taking every day seriously and wondering if it will be my last. I think that is a gift that cancer has given me.

I don't take anything for granted and I am so grateful. I am grateful to be able to walk down the street to the bus, to dance and run, I am grateful for all my limbs and organs, I am grateful for my hair even though it's short, I am grateful for my incredible job that makes me feel like I am fulfilling the purpose of my life at 29, I am grateful that someone loves me, I am even more grateful that I can feel and give love too after being so afraid, I am grateful that I can sit here with all this nervous energy and type it out til I'm exhausted... I am grateful for uninterrupted sleep and hot bubble baths!

Anyway.

Results Thursday 1/12/12.

Until then, stay cool!

loved this

30 things to STOP doing to yourself!

sick dreams are silly

I think I am getting sick, and before I get the first sneeze, I can tell because my normally fluffy dreams go dark

Dream #1 was super short and happened between 2-4am when i accidentally fell asleep between texts with B. There was a little boy playing who wanted to be included with friends, but his parents sucked and didn't really give him the attention he needed to be a normal kid. His friends parents invited the little boy to join them all at the beach so he packed a beach bag. When he got to the beach he was so embarrassed because he didn't know how to pack a beach bag and put in sweaters and socks. When he realized what his friends had packed in their bags (shovels, pails, towel), he started crying. Then really really loud. So loud it woke me up and I was upset. Little kids being so upset is the worst!

I am so glad B is up that late, I told him I needed him and he called me and put me back to sleep (love that).

One of the problems I have with an overly empathetic brain is that I drown in feelings. When I am awake and rested, it's a gift that makes me really good at my job like Counselor Troi. But when I am sleepy and sick, it means I cry at the snap of fingers, and cry while sleeping even for other people's pain (like the little kid on beach).

I normally (like every night) have sweet or psychedelic dreams (cotton candy clothes, golden sled pulled by unicorns, bed made out of clouds, me and B laying on picnic blankets and eating macaroni and cheese and telling stories, you know... stuff that makes me feel good). But when I am overly tired, i get sick, and then I get emotionally weak and take slightly bad/stressful things harder than I normally would, and maybe that influences my dreams or ability to deal with real life.

VACATION is starting Thursday! But the week is winding down already! Working from home today and Wednesday, and Tuesday is just meetings from 10-3. Weds night is IPS holiday party (SO EXCITED!) and then I am getting my rest on until January 3

Campaign of the Day: "We Belong Together: A Wish for the Holidays"

This is a campaign I am working on related to immigration and families:





------------------
What do children want for the holidays?

Many mall Santas are hearing, “Please find my mom and dad a job.”

On December 8 Congressional leaders heard, “Please bring my mom and dad back home.”

Dozens of children went to Congress with grassroots leaders to share stories of families torn apart by immigrant detentions and deportations. They delivered 5,000 letters, all from children, all written by hand.

The children took their message to elected officials on both sides of the immigration debate. Unlike many adults who’ve given up on Congress, they’re hoping everyone will care about families being able to stay together.



--------------

There is still time and need to participate in this campaign! If you work with kids and have ideas for how to reach immigrant families, let us know. What I am learning in all of the different campaigns I am working on is that telling a personal story is the best way to reach people- everyone, EVERYONE has a story of struggle and fear and the desire for change or relief. When we give people the space to share those stories, we help them become more human to others. It is my hope that even while technology threatens our ability to feel empathy, it also provides us with the tools to retain it, if we use them.

A Movement Within

Over the past few years I have had the chance to work on a few very exciting campaigns - most related to the struggles faced by working women of color - particularly domestic workers and caregivers. I am fortunate that at this point in the movement the silos of immigrant justice, worker justice, human rights, gender inequality, economic inequality are really coming together in the public consciousness thanks to one common thread: the value of care.

One campaign that is emerging with a broad coalition of supporting organizations is "Caring Across Generations" which is building a movement to transform the direct care industry in the US. These are the workers who provide some of the most important, essential care to our seniors and people with disabilities- care that allows our family members and friends to remain independent and stay in their own homes. Yet direct care workers have some of the worst jobs in America. In addition to difficult work, long hours, hazardous conditions, lack of respect, and low wages, a significant portion of this workforce is actually excluded from the most basic workplace protections we have in this country: the right to minimum wage and overtime protection. Under the so-called "companionship exemption," these workers are specifically carved out from protections that are afforded to nearly every other worker in the country.

Yet, the villain of this story is not as straightforward as it is in other worker rights narratives. Unlike workers fighting for union rights at Wal Mart, or miners striking against exploitative trade deals, the interests of the workers in this industry are not neatly
aligned against the interests of their employers. In this case, the workers and employers have much in common, and much to gain by allying with each other. Through Caring Across Generations campaign, we're helping dismantle this false antagonism, and helping workers and employers turn their frustrations toward politicians who would rather cut already-strapped social safety net programs like Medicaid and Medicare than tax the wealthy (and toward corporations that are benefitting from our country's healthcare crisis) rather than turning against each other.

Today in Washington, organizers and allies of Caring Across Generations (including myself), joined up with the movement to "Take Back the Capitol" organized by unions as part of their contribution to the Occupy movement. It was pouring rain on the National Mall (and the ground was 3 inches of mud!), but the people were out in force! We met under a huge tent and I had the opportunity to facilitate a small group of folks from all around the country (New Mexico, Wisconsin, and Missouri) all doing different jobs and with different healthcare crisis experiences- some were doctors, some were direct care workers, others were patients and parents of patients. My role was to help them reflect on how telling their personal stories and experiences could be extremely powerful tools for mobilizing and inspiring others. So we practiced telling our stories, got feedback, and then taped each other. It was amazing! I look forward to sharing the video and audio that came from the workshop.



I hope over the coming weeks I can share more of the work of each of the campaigns I am working on, but here are a few of the links for those who want to know where my brain spends its time:

www.breakthechaincampaigndc.org
www.ips-dc.org
www.domesticworkers.org
www.caringacrossgenerations.org
www.webelongtogether.org
www.excludedworkers.org

Check In : Labor Day Edition!

Friends,

Been a while... I hope to start checking in more frequently after a long summer break. Here's a catchup:

Cancer:

I had a PET-CT scan on June 29th (my 29th birthday!), and it was CLEAR. AGAIN. Hell yes! My doctor was appropriately pleased but not ready to give me a high-five yet. Since I have sneaky refractory cancer, he is holding off on the celebrating until at least the 1 year mark (I will get a scan in early January). There is still a 50-50 chance of relapse. Not sure what to do to up my odds other than wearing sunscreen and avoiding binge drinking... both seem easier as I age. We are keeping in my port until then too (I told him I would keep the port forever if it helped to not jinx me!). My recovery is going well- I am feeling 100% awesome, I have gone to the gym every day for the last 4 days (and plan to go again today). My blood counts are so-so, though. It turns out that radiation really takes a whack at your bone marrow-- my WBC is only 2.5, which is above danger levels, but significantly below normal (should be 4+). My red blood count (HGB) came up to 12 -- which is the bottom of the normal scale for women. It increased since the last test though - I think thanks to my newfound love of juicing vegetables for pleasure. My platelets are sticky but not sticky enough- only 125K when they should be 175K -- I think this might explain the little bruises on my legs. My doc says that every healthy young woman gets bruises on her legs because we have thinner skin there and every little incident causes a bruise. He dared me not to stare at women's legs for the rest of the week (impossible!). So, I am continuing on my exercising and juicing crusade now that I have mini goal of bumping up those counts (in addition to the long-term goal of not dying).

Work:

It is going well- I am working on several projects: 1) I am jumping into the immigration fray and framing it as a gender issue-- harsh immigration enforcement destroys the lives of women and families. I am heading to Atlanta at the end of the month as part of this effort, participating in a delegation of women leaders (yes, apparently I am a leader!) to witness the testimony of women and children there, and we are holding a press conference the next day. I am really excited about this work. I believe that people should be treated like human beings and deserve the human right to care for themselves and their families- in our increasingly unfair global economy, immigration is inevitable, yet we treat people like animals or criminals. It is morally wrong and I am happy I have a job that lets me say so.

My second project is related to the forthcoming (we hope!) reauthorization of the Trafficking Victims Protection Act, which is the landmark legislation that protects victims and ensures they have access to the legal and social services they need. It also has provisions for international prevention and prosecution of traffickers. My role in this effort is to write and visit congress and share the social service perspective of the anti-trafficking field in the United States. In truth, NGO's need more money (surprise!), and survivors need more services and protection (surprise!). So, we will continue to try and improve this bill year after year.

On the personal level:

I recently moved to a fantastic new apartment, all by myself, in my beloved neighborhood of Mt. Pleasant. I love this neighborhood, I love my new home. I love being alone and having all the physical, mental, and emotional SPACE to think, meditate, relax, and otherwise enjoy myself without limits. I am assured that if I enter into another relationship that this selfish period will need to end, so I am holding off on dating for a while. I am really enjoying the solitude and see no reason to abandon it.

Finally, here is what I read in the newspapers today:

Washington Post:

"How Every Marylander Benefits from the DREAM Act"

The Comics Section (duh)

"What's in a Name, and What Isn't" (about namesakes-- e.g., "Machiavellian," "Jeffersonian," etc.)

New York Times:

"The Limping Middle Class" (by Robert Reich)

"Finding Work-Life Balance" (in the Jobs Section)

HAPPY LABOR DAY WEEKEND! Go thank a union member!

leave it to the US to rely on military intervention, even in fight against cancer! (from the Onion)

DC Abortion Access

One of the (likely many) casualties of the late night budget deal that kept the lights on in the Government was DC abortion access.

Here's a note from Abby from DC VOTE:

As you may know, DC's right to provide abortions for low-income women was sacrificed by Senator Harry Reid and President Barack Obama in order to get a deal on the federal budget bill. We need to fight back before the deal is signed into law.

Are you tired of being treated like a second-class citizen? Mayor Vincent Gray said Friday that this deal makes him angry. Delegate Norton has been expressing her outrage all week. Both of them have called on DC residents to take to the streets.

The Senate and the House are drafting language for a federal budget bill that will likely include a permanent ban on DC spending its own local money for reproductive health care services for low-income women. It would also impose a voucher program and may ban syringe access programs that help stop the spread of HIV-AIDS.

Here's a good Post article about the deal, with lots of specifics. And another that quotes Obama as explicitly giving away "DC abortion" to Speaker Boehner.

MONDAY:

Demand democracy for DC by joining us this MONDAY at 5 PM outside of the Senate Hart Building, which is located at 2nd and Constitution Avenue, NE.

Pledge right now that you will take to the streets by emailing us at rsvp@dcvote.org.

WEDNESDAY

There is a happy hour this Wednesday sponsored by Planned Parenthood from 5pm-8pm at the Front Page in Dupont:

ONGOING (RIGHT NOW TIL SUNDAY):

The Sunday, yours truly (and bestie Allie Goldberg) are bowling for choice for the DC Abortion Fund. DCAF helps low-income women access the services they need- even more important now that Congress has taken away assistance. Here's a note about it:

We need funds now more than ever. Last night, in the eleventh hour compromise to keep the government open, Congress agreed to a provision banning the District from spending its own locally-raised revenues to provide abortions to low-income women. That's right - DC ripped of our own autonomy, and DC's women thrown under the bus. Here's some info on the ban:http://wapo.st/g2TEHN http://bit.ly/ieRbh8 http://bit.ly/fzOmy8 http://bit.ly/flG1zj

For DCAF, this policy rider is tragic. The women we serve will have one less option for help - making DCAF the last option. Over 60,000 women in the District will be affected. The need will skyrocket, and as a Fund we have to be prepared.

There's been a brilliant outpouring of support so far, but now, more than ever, we need to shore up our community and come together to fight back against these legislative atrocities. We can't let the women of DC suffer on our watch - this piece of legislation is cruel! Just in time for the bowl-a-thon, we have launched an emergency campaign to bolster our Fund for the increased demand, and we need your help!

Please donate to my team on my page, here: Tiffany's Bowl-a-Thon Page!

Happy Cesar Chavez Day!

Today, on his birthday, we celebrate the life of Cesar Chavez, a visionary leader for the struggle for immigrant worker justice in the United States. Chavez and his co-organizer for United Farm Workers, Dolores Huerta, were the pioneers of the inspiring protest chant that we still use today: "Si Se Puede!" (it CAN be done!). For more about the amazing life of Cesar Chavez, check out the UFW website


Today, OxFam America sent out a press release announcing a new report ("a unique for-profit/NGO collaboration") from UFW and corporate food company Bon Appetit management (who say on their website that they were invited by CIW to witness the farmworker conditions in Florida and set to work right away, inspired, on a code of conduct.

Here is some of the press release for the report

The Inventory of Farmworker Issues and Protections in the United States is the product of a unique for-profit/NGO joint venture of the Bon Appétit Management Company Foundation and United Farm Workers (UFW), with support from Oxfam America. By compiling and analyzing data from multiple federal, state, and private sources, it renders the most comprehensive picture yet of the reality faced by America’s least-valued yet critically important workforce.

Key issues faced by the nation's 1.4 million crop farmworkers:

• Farmworkers are exempt from most federal wage and hour standards, and even existing regulations are rarely enforced, leading to rampant wage theft and other abuses.
• Children as young as 12 are legally allowed to engage in farm work, although it is one of the most dangerous employment sectors.
• Widespread use of subcontractors leads to lack of transparency and difficulty enforcing existing laws.
• Health and safety standards are inadequate, and even those that exist are rarely enforced.
• Most farmworkers are ineligible for unemployment insurance and workers’ compensation insurance that is granted to employees in other sectors.
• Farmworkers are explicitly excluded from laws that protect collective bargaining and free association.

In summary, the U.S. food supply depends on the labor of a socially and economically marginalized population working in often appalling, sometimes abusive conditions.

Bon Appétit Management Company, known for its pioneering efforts toward more sustainable food sourcing, has long wanted to add farmworker welfare to its list of core values. “But when we began questioning our suppliers about the human element in how the food was produced, we discovered they knew very little about the people who actually harvested it,” said Maisie Greenawalt, vice president of strategy, Bon Appétit Management Company. “They thought that the lack of data about violations or abuses meant that there was no problem. Our partnership with the Coalition of Immokalee Workers in Florida had opened our eyes that this was not the case. We helped develop this report as a first step toward being able to direct our purchasing power to operations that treat their agricultural employees with certifiable dignity and fairness.”

The UFW, the largest and oldest farmworkers union in the United States, hopes that through the Inventory it can motivate consumers to help bring justice to the millions of workers who toil in our fields. By exercising the substantial power they wield over the stores and restaurants they patronize, consumers can compel agricultural employers to treat farmworkers with the dignity and respect we demand of one another every day.

Bon Appétit and United Farm Workers would like to see the data compiled by the report lead to the development of verifiable and enforceable standards for farm work that can be supported by both individual consumers and socially responsible corporations.

“Thirty-nine years ago, César Chávez coined the phrase 'Si se puede!'” ['Yes, we can!'] — a reminder that each of us is the keeper of César's legacy,” said UFW President Arturo S. Rodriguez. “The greatest monument to César Chávez isn’t on a street sign or an official holiday. It’s having the courage to work for change that he instilled in his own people and in millions of others who never worked on a farm.”

America's cheap and abundant food system is the envy of the world, but it cannot continue to rely on an invisible underclass of exploited laborers. Until we acknowledge this and take steps to grant farmworkers the same legal protections in the workplace as those in other U.S. occupations, we will never have a food system that is truly sustainable, fair, and healthy for all.

The executive summary and full report, along with high-resolution photos of farmworkers, can be downloaded from http://bamco.com/page/114/farmworker-inventory.htm.


-------------------------

I think it's a totally interesting idea to do a report in this way- perhaps the other corporate food people will be inspired to action seeing the opportunity for collaboration. TW.

In the meantime, we continue to support workers in struggle for justice!
Si se puede! Si se puede!

On Civil Disobedience

Civil disobedience is patriotic, moral, honorable, and sometimes required to achieve true justice.


please see:

"Letter from a Birmingham Jail"
Ghandi "Dandi March"
H.D. Thoreau: "Civil Disobedience"




Beck and other conservative pundits, and their partner members of Congress, are saying that dissent is terrorism...in other words: http://en.wikipedia.org/wiki/Totalitarianism


Now, people, if you believe in exercising the rights of democracy, dissent, and love for your fellow man and your civil rights, join us!

Here: US Uncut

and Here: Wisconsin

and Here: Arizona

and Here: Jobs with Justice April 4th March

and Here: Stand up for Women's Rights Rally April 7


More?

that little marble of panic i've been holding

has turned into a bowling ball... trying to keep it from turning into a boulder.

two of my refractory friends got bad news this week... karin is off SGN-35 and Chris is off SAHA, both had new growth of their tumors. I want to be supportive and positive, but I am so scared. The more treatments you go through, the fewer that are available. Luckily, with Hodgkin's there actually ARE more available for both of them, and for the most part they are otherwise OK (not bedridden or anything), and they are working up plans to see their doctors and get other leads on trials. So truly there is no reason not to hope and assume that they will find something that will work, especially since Bekah went 3 years before finally getting a remission. However, this tiny part of me is totally avoiding them, trying to maintain my blissful denial that I have enjoyed for the last month. I haven't had any reason to think about cancer or the possibility that right now the cancer could be growing back microscopically in my chest and that when I get a scan this May or June, that it could show the disease again. I just want this to be over, but the odds are not that great. If I wasn't refractory, if i was like the 80 percent of people who get full remission from the first round of treatment, then believe me I would be closing the book on this, but .... refractory. incomplete remissions. stem cell transplant. the odds are only at the very, very best and including the consolidative radiation i had afterwards, only 50% that I will be cured. Then I will have to join Chris, Bekah, and Karin in going through some shitty chemo trials that make me feel awful again, lose my hair again, lose work again, lose money again, be depressed and unable to date again, all of this. I am not as scared as I am exhausted. I am so afraid I can't do it again. I am afraid that I might just say no to treatment.

for now it's sunny out, and i feel good, and i can maintain my denial until this summer and do a lot of work and accomplish a lot, and if I have another relapse I will go to Dr. Younes and see what can be done, and deal with it then.

I just want to be more "there" for my friends, but I don't have a lot of optimism to share and don't want to do more harm than good.

I don't think this feeling will go away until December 2015, 5 years post SCT when I can call myself cured... so get ready for a lot of freakouts until then! :)

remission accomplished.

well, treatment is over for now. I don't have a doctor appointment until the end of March.

radiation is done. chemo is done. transplanting is done. growing new blood cells is done.

side effects as of tonight (1opm saturday) are done too. suddenly. I feel fine. I feel like the last 18 months of wondering whether I would be dying soon never happened. I have to actually slow down and remember what it was like to live through treatment because as of now there's not really a trace of it in my daily life.

all i want to do now is be my best self, take care of this one body I have, the new chance I have to keep my body's chromosomes from breaking and reconnecting to each other wrong and then multiplying. I can't do much, but I can exercise, eat organic/vegan, avoid smoke, not drink too much alcohol, keep my stress level at around 0, and try to work/love/live to the MAX! If the cancer comes back, then it comes back and I will be ready to kill it again! RAWWWRRRR!!!!

Radiation Day 8

radiation...

only 5 more days! I have a full week- Monday to Friday- and then it's over.

So far it has been fine, easy, non-painful, and apparently covered 100 per cent by my insurance since I haven't had a copay yet... And it takes literally 20 minutes from walking into the building to walking out.

Side effects haven't shown up until today (day 8 of 13), and they are just fatigue and a slight sore throat (it's more like something caught in my throat, not like a burning). I will definitely enjoy the Saturday and Sunday break I get b/c the clinic closes on the weekend! My skin on my lower neck is slightly red, but not very noticeably.

I expect the week ahead to worsen these side effects and expect that they won't go away for a couple weeks while my body heals, but this is truly a breeze compared to chemo so far! If the throat thing gets too much worse than it is now, I will see what kind of meds they might be able to give.

That's all for now! 9pm on a Friday and I am going to bed! :)

Radiation Simulation

Well, this was not the most pleasant experience (but compared to some of the other things I have experienced with treatment, it was a piece of cake!). I think the most disconcerting thing was having to be completely topless on the table for like 30 minutes. I was pretty cold and all I kept thinking about was asking for a blanket. They told me it wouldn't ever be that long when they're really doing it, so in the future it will be over before I know it. I didn't get my tattoos this time, just a whole lot of permanent marker to hold the spots. They told me I could shower but couldn't scrub until they had the tattoos on there. They will use the marks to help line me up again on the first day, and then give me the tattoos and the first dose of radiation. It will take about 10 minutes and I will go in every day for three weeks and then it will be over!

Anyway, they said it will be radiation to the neck and chest, at a relatively low dose since it's just consolidating the stem cell transplant, and that I will start on Wednesday February 2nd and go for 15 days. They said I should start to feel the effects (fatigue, sore throat) near the end of treatment- perfectly timed for the massive four-day campaign meeting I have scheduled at work! Ah well, I have worked through two kinds of chemo and a stem cell transplant, I think I can work through some radiation fatigue, haha.

I am really looking forward to 2/21-3/28, when I will get to have the luxurious Adams-Morgan apartment (with cable, a dining room table, and a treadmill with its own TV!) of a co-worker while she is off on a writing retreat in Texas... ALL TO MYSELF. Yes... space, privacy, amenities... doing whatever I want at whatever hour, not having to share... I love my life and housemates, but have to admit that one of my favorite things in the hospital was plenty of alone time.

Anyway, I will get through this next month and the stupid radiation, the stressful series of meetings, and then reward myself with this great month in my own apartment, working from there between treadmill runs...

Always gotta have something to look forward to!

Oh well,

yay!

remission!



dang, it took long enough!



radiation starts next week and of course I will be faithfully posting about all THAT fun...

:)

Doctor Visit Updates Pt 1

I went to visit the radiation oncologist, Dr. Saini, at GW Hospital. She was very nice and explained a lot about what to expect. She is going to consult with Dr. T and the Hopkin's doc about exactly what kind of treatment plan we are looking at, but it seems like I should expect about 15 days (3 weeks) of radiation to my neck and chest. I will go in next week to get the simulation done- they will strap me down to the table and give me my tiny blue tattoos and line things up where they need to go. I am ready!

On Wednesday I had my post-SCT PET scan, and now I have about a week before I see Dr. T and get the results. I am not tooooo worried about it because we are planning to do radiation, whether there are still spots or not. The only bad thing that could feasibly happen would be growth in different spots than I have had it before, especially if they are below the diaphragm as that would rule out radiation. Ideally the scan will be completely clear, but considering I have yet to have a clear scan since diagnosis, my hope rests in a significant reduction that WILL be completely cured by radiation.

I have started to sprout quite a few hairs on the top of my head, but none around my ears (still smooth and soft there). I am back to working about 14 hours per day and barely having enough time to eat/sleep, but I am starting (starting!) to figure out a new pattern. While part of me wants to continue to "take it easy" the other part of me is scared that I will relapse soon and wants to get as much accomplished while I am feeling this awesome as I can! It's complicated.

I have a ton more to write about (non-cancer related) but I will save it for another day because I have some work to do right now :)

Love

Tiffany

Haven't posted much here in a while, as I am feeling great and totally too busy to think about cancer...

I am doing great and feeling 100%, maybe even 110%

I am dreading the radiation side effects (Hodgkin's board has some yucky stories), but looking forward to getting the treatment anyway. My gut tells me that there might be something showing up on the scan in a couple of weeks, but I feel lucky that we are planning to do radiation regardless. It makes the scan less important. I try not to think about what would happen if I relapse soon after radiation. I hope that I can get some work and life in before that time, if it comes!

Scan and first radiation oncology consultation will be Jan 18 and 19... nothing but fun until then!

Tiffany

My Elementary School Pen Pal

I am writing to share some sad news that I haven't quite processed yet, and hope that by writing I can ease some of the pain. Some of you know that I am a pen-pal/mentor for a 3rd grader in Missouri. Her class is part of a program called "In2Books" where they pick a book to read, and adult penpals from around the country read the book with them, and then we write each other about the book. It's supposed to help the child develop critical thinking skills, as well as practicing using the computer, spelling, and grammar. It's a great program.

My penpal and I read this book called "A Letter to Mrs. Roosevelt" and we had just written our first set of letters about it. My pen pal and I share some things in common, we discovered. Just like the little girl in the book, we are big sisters to precocious little brothers and we talked about that.

I got an email from her teacher this morning saying that my pen pal was no longer in the classroom because she had moved. Apparently the mother was at work on Christmas Day (a tragedy in itself), and the kids were left alone and one of them decided to cook breakfast and accidentally started a fire that burned their house down. Luckily everyone escaped unharmed, but there was too much damage and the family had to move.

I am so upset about this, probably projecting my own memories of my own house fire when I was in elementary school (3rd grade too, actually) and my own family having to move. I wish I could talk to my pen pal and tell her I understand what she is feeling and how scared she must be about losing her home and having to move and change schools, but the privacy policies that (rightly) protect the kids don't let me do that.

I guess I am just writing to share this and hope that you can please send some healing energy to my pen pal and her family. I am literally in tears writing this....

Whew! Breathing Easier.... :)

I had no idea I had so many blog readers, so I will try to watch my grammar and spelling!

Today I went to the doc to get my blood work and check in with my oncologist, Dr. T. It was a great visit! I really love the people who work at MFA- the front desk ladies, the lab ladies, the infusion room nurses, and the social work staff... everybody is just awesome and nice and they all know me by name.

First, the blood work was great:

WBC 4.863

HGB 10.81

PLT 105

Second, Dr. T has agreed to the plan from Hopkins for radiation on all my initial sites of involvement, and set me up with a radiation oncologist appointment for mid-Jan.

Third, we are getting the PET scan in mid-Jan too. He is concerned about the PET showing inflammation, etc. as activity and causing false alarm if we do it too early, but understands my anxiety, so we compromised at 6 weeks post-transplant.

I asked him what we would do if there were still spots showing, and he said he would do radiation, which we're already doing so... yay. I then asked him, "what will we do if I relapse after radiation?" And he said, "don't worry about that more than you would worry about getting hit by a car... if it happens we deal with it then. In the meantime you need to get back to your regular life... ASAP!"

I think that all sounds pretty good... So I am gonna get into work, etc. for January and try not to think about things (or at least think positive when I can't help but dwell on it!). I am sure I will be nervous about the scan, but happy that I am already setting up for radiation no matter what...

That's all! Mom is here and it's awesome- she cooks all my meals and then washes all my dishes, haha. And she found out today that her boss is going to still pay her for this week that she's here! It's such a nice Christmas surprise!! Life is good today. :)

lab work update/radiation panic

Meh, my blood counts have dipped again. Well, not all of them, but I am neutropenic again (boo!) and the platelets are only a bit over 40. Not transfusion level, but annoying. I had to get a neulasta shot which should carry me over for a couple of weeks on the low WBC. It was fine. I didn't get any restrictions, just to be careful.

I heard from the Hopkin's doc last night who said she would have had me on the radiation track to start about a month after transplant (which would be around the week of Jan 3). Unfort my doc, who doesn't really believe in radiation, and does believe in giving lots of time to heal, hasn't set me up with a radiation onc yet. Of course I am panicking because my gut is telling me I need radiation ASAP, but I am doing my best to be proactive and rush things forward and not think about the holidays getting in my way. I told my doc today that I am getting radiation asap, whether he wants me to or not (haha!), and he said well, yes, okay, that's fine, but you will need a scan first anyway so can we do bloodwork on 12/30 and make a scan appt?

So my plan is try and schedule the PET scan myself on 1/3 (rather than waiting til 12/30 and then not getting something for a week), ask Dr. T to write the orders for "stat" results so they call him right away, because GW takes forever to report results... and go ahead and schedule an appt for the GW radiation oncologist for that Thursday (whether I have seen Dr. T or not) to get a treatment plan and beg to begin by 1/10. That would put me about 5.5 weeks post-transplant. I am sure Hopkins would think that's close enough to a month.

The only catches are a) how quickly can I get in to a PET scan and to a Rad appt? and b) will my blood counts go up enough to actually start radiation?

Please send me vibes that people in the PET scan/radiation oncology offices will have mercy and squeeze me in, and that my stubborn blood counts will start going up!

Send your vibes and prayers to Karin

Friends,

My online friend Karin got a bad scan today and might be resisting her latest treatment. I am healthy for right now (for all I know, since I don't get scans for another month!), so please redirect your prayers/vibes her way. We have the same birthday and diagnosis, and she is struggling the way I might be struggling in a year. It's scary and very upsetting to hear what's going on with her since we have so much in common, but I can only send my love and hope to her while I have it to spare. She has been/is amazingly strong, like me, and has continued to try and live her life through this stuff. She just needs a break!

Thanks,

Tiffany

I am home, and let me tell you...

it is awesome.

in even better news: they pulled the catheter before I left the hospital, so it's out, and it didn't bleed, and tomorrow morning I am gonna take the longest, hottest shower I have had in two months. I am gonna get to scrub and not have to worry about anything getting wet!

my sleep last night was okay. I still woke up at 2AM by myself, but a couple episodes of Bones and I was out again until 8:45AM so I think I caught up. I mean, I dreamed, so that's a good sign right?

No side effects, and I can run up and down the stairs already. I might be a stem cell transplant prodigy. I hope it doesn't mean the chemo didn't work or something. I mean, my hair all fell out so that means it was toxic enough, right?! I won't know anything until the PET scans and I am not holding my breath for a cure yet. I won't be OK until the thing is gone for 5 years, so everyone will have to bear with me. If the transplant didn't work, it's probably off to clinical trials in Texas...

I am going back to the outpatient clinic tomorrow for my blood tests. There is a high likelihood that I will need platelets, and MAYBE a red blood transfusion, so I will plan to be there for a while. There are no side effects from getting that stuff so I should be fine after it's over and have a normal weekend. Yay! Camille is coming to town and she and Allie are gonna visit me on Saturday!

In my last bit of great news, two of the best people in the world have set a date and I am invited! I have never been to Rochester, and I cannot wait til Memorial Day weekend 2011! Yay!

That's all for now!

Love

Tiffany

Update from the hospital, Day +14: Going Home!

so grateful to be going home today. Platelets are high because of the transfusion but will probably drop, Hgb and Hct are borderline, but if a transfusion is needed I can get one at the clinic Friday. The best news is: On day +14 of my transplant, my WBC is 3.75. A healthy person's is between 4-10. I am only a few days from being normal!

Thank you body for bouncing back. Most people are in the hospital for at least 4 weeks and still have a lot of healing to do, I am out, and great, in 3 weeks. I won't know if this treatment worked for a month or so, but in the meantime at least I can be grateful to feel good again so quickly.

I am still battling the emotions about the chances of success for my transplant, given the stage 4 diagnosis, the incomplete remissions, but there is still a chance that this will work so I have to bet on it. I will be asking for radiation to at least the spots where I relapsed, which should help, and there's a good chance I can get a remission that will last at least a year so I can heal a bit before the next thing. There is a new drug that is almost approved by the FDA that is showing good results, and I have great resources at Hopkins and MD Anderson if/when it's time to start treatment again. In the meantime, I am enjoying and making the most (work and personal) of every single day that I don't have side effects.

And counting down til my mom gets here on Christmas Eve!

waiting is awful

waiting for the blood counts for today is torture! even though it's a small possibility, I am nervous that something catastrophic might have happened overnight to my blood counts... tick tock tick tock tick tock

WBC 2.94 (YAYYYYY) and ANC is 1500 so I am off the antibiotics!

Hgb 8.8

Hct 26.4

Plt 16 (BOOOOOO)

The good news is that while I thought I had to stay here until Sunday because of that platelet count, my doc has decided that overall we're better off doing transfusions in the clinic on Friday and Monday (and maybe Wednesday) since platelets are the only things keeping me here, spending night after sleepless night. Awesome compromise right?

So I am outta here tomorrow around lunchtime (the time it takes from rounds until the paperwork is done)

I am excited. I have to be really careful and stay home, germ-free, and not fall down or cut myself, but things are looking good.

Update from the hospital, Day +12

Short blog post today because the #'s say it all:

WBC 2.39

HGB 9

HCT 26.7

PLT 25

In other words, freaking awesome.

I should be in my own bed this weekend, AS LONG AS I DON'T GET SICK/FEVER!! Please keep sending me healthy, protective vibes, so I can get that WBC up to 4 as soon as possible! And also another set of vibes to keep my platelets above 20 for 3 days in a row. Can't leave til then!

LOVE TIFF

UPdate from the hospital, Day +11

Today is great!

WBC 1.25 (hell yes, you read that right!)

But ...

Hgb 8.8 and Hct 25.1 means that red blood is just barely above transfusion level. Boo. On the bright side there, the doc says that red blood is the most stubborn, and he's not too worried about me possibly needing another transfusion on an outpatient basis in a couple weeks. So I am gonna stop fretting about that. It probably won't hold me up from getting discharged.

The worst results were the platelets, which were 18. For day +11, that's not too bad! But I have to be above 20 to get out of here (and a sustainable, no transfusion 20). Again, doc says these are slow, but once they start rebuilding they come up pretty fast.

I have had some trouble sleeping the last couple of nights because I keep getting woken up at 2AM which is a terrible time since I have to be woken up at 3:30AM for blood draw. I told Dr. Siegel about it this morning, and he was like, "duh let's just change the time of your meds." Like, no big deal! So my new schedule is

6AM- 7AM Antibiotics

8AM-2PM Free

2pm-4PM Antibiotics and Magnesium

4PM-8PM Free

8pm- Get hooked back up to machine, Benadryl to induce sleepiness, vitals, sleep

10PM- Antibiotic, Ambien (minimal waking up needed to do these so I can get right back to sleep)

10pm- 3AM Sleep completely uninterrupted

3AM- antibiotic, blood draw, MAYBE go back to sleep if I can

6AM- wake up fully

All in all, docs say the following: "you are doing as well as you possibly can be, if not better" and "we want you to be in your own bed this weekend" (even after they got today's blood counts!). Also, I think people like betting on a winning horse, because Dr. Siegel (who was on service this weekend in place of Dr. Tabbara) was super hilarious and nice to me (not that he's not always nice, it's just that they are pretty happy when they come in to talk to me during rounds, which makes me feel good).

I just have to keep up my body's hard work (what's that even mean?! Multivitamins, broccoli?) and not get any fevers or clots. I am doing fine on the clots possibility as I am now walking around like crazy (and by that I mean, I look like a crazy person because I am wearing a robe, tennis shoes, and a face mask, and walking pretty fast to Passion Pit and other bouncy music).

Fevers I have less control over, unfortunately, other than a strict limit on visitors, handwashing, and outside food.

I am getting both visitors and outside food tonight, though, as Allie (and Sam?) are bringing homemade vegetarian chili and cornbread to have dinner with me tonight. I am super excited!

I have had some good daily visitors too, shout out to Heather Konerman who totally made me cry with a surprise visit from Cincinnati, as well as to the fabulous Harriet and Larry Bachman (Nora's parents), and my other awesome visitors this week!

Also a special thank you, in case she's reading, to my Aunt JJ for her generous Christmas present. My family is the best! I can't wait to see my California contingent when I am able to travel.

Oh speaking of travel, one of my very best friends, Jackie, is coming to visit me in January! Not sure of the exact date yet, but I am totally psyched! And we are talking about a trip to Texas at the end of September to eat fried cokes. More on that some other time.

Anyway, back to work... Yep, I am working again! I love having a job that I can do from my laptop. I am the luckiest worker in the world, I truly believe that. IPS/NDWA are amazing employers. I will never quit!

Love to you all! Stay warm!

Tiffany

UPdate from the hospital, Day +10

My body is a temple. Wherever I go, I am in my temple.

People, my WBC is .97 today. Can you even believe that? I am still in shock (I cried). I was telling myself to be happy for anything over .34 (my 2nd to last count, since they fluctuate). I have to ask Dr. T if it can go back down again before I get REALLY happy, but thought I should celebrate this count, however temporary. Even more encouraging is a nice boost in hemoglobin and hematocrit with no transfusions needed. I am thinking it has everything to do with my five times per day walk around the floor (today I did it to music- John Coltrane- and I swear that had an effect).

Please send me vibes that this is the new bottom point, and that my counts will keep going up. Although I can TOTALLY handle another drop (I am doing really well, symptoms wise (i.e., none)), it would be nice to be outta here next week if I am so lucky. We shall see!

Thanks for all the love and support, it's WORKING!! Keep it coming!!

Love

Tiffany

Update from the hospital, Day +9

mixed news! my platelets are super low again (see nosebleed above), so i have to get some more but my HGB and HCT are "OK" and my WBC is

drumroll

0.52!

thank you thank you

update from the hospital, Day +9

nosebleed that won't stop dripping! more later. this is minor just annoying.

UPdate from the hospital, Day +7

blood counts are low but stable! I couldn't be happier with the blood counts thing. I need more platelets today but that's normal (apparently). And the fever thing is outta sight. So YAY! My bowels are still revolting against the chemo (look up microvilli and why not burning them with chemicals can be important), but we are doing our best. Since they can't treat it (because the bad cells need to come out), they have decided to numb it. That's right it's our old friend Dilauded on the PCA (that's "push the little button") pump. Oh yeah, that's the spot. My eyes are squiggly and my feet are shuffle-y, but at least I don't feel like I am getting stabbed in the stomach like some kind of reverse "et tu, Brute?"

I need/want to work. I have a lot to do and the more I think about it, the bigger the stack gets in my head. I am asking people who want things from me to make me priority lists so I have something to chew on between my good hours of 4AM-6AM. I can't even color in the lines of the anatomy coloring book that Allie got me, or answer any of the word questions from Nora's book, or read any of Daphne's pop pscyh lending library, but i did watch In the Loop courtesy of Sarah Anderson. I was going crazy and couldn't sleep anymore, so a witty movie was in order to keep me from pulling out my own hair (more on that later).

Oh, my hair. It's still there. for Now, but it's itching itching itching which means it's on the way out. Does anyone want to come by the hospital with some clippers and give me a Natalie Portman?

That's all for now, folks.

UPdate from the hospital, Day +4

I wanted to update to say a few things! First, I am completely overwhelmed with gratitude for people's donations toward my mom's trip. We have met our goal for her ticket and because she doesn't have to pay for anything, it means that her missing a few more days of work won't be even more of a hardship so I am going to fly her here probably Dec 24-29th or something in that range. I haven't seen my mom in at least a year and I cannot even describe how excited I am. You know what I mean, right? When you're feeling sick, ALL you want is your mom. My friend Noah is leaving town around that time and has offered to leave his car for us, so my mom can take me to my appointments, go grocery shopping for me, etc. It's really all working out and I can't thank my community of caregivers enough! Truly!

Now, for the hospital update: things have been pretty rough going here, I have had a high fever since Friday night that just doesn't seem to want to quit, though the good news is that so far there is "nothing growing in the cultures" meaning it could be a fever due to my low blood counts and not an infection. My WBC is 0.16 (normal 4-11 ish) and my platelets are 17,000 (spontaneous bleeding range!), so I got my daily dose of Neupogen and a platelets transfusion this morning (they look gross). The fever is annoying because every night that I spike, I have to have blood drawn from three places. Fun times! But so far no major disasters on that end, other than the requisite complaining/panic attacks :)

The other big problem I am having is bowel issues- I won't go into detail, but I will say that they have me on OXYCODONE because of the pain in my belly. That stuff's no joke, either! I am barely able to type!

Anyway, in other news my aforementioned amazing friend Noah (who has done so much for me I don't even have room to write it out), broke his foot and is immobile! Please send us some youtube videos to watch while we are in our respective bedridden states.

Thanks for reading this far, it means a lot to me that people are keeping up and asking about me, I will do my best to keep everyone posted!

THANK YOU

I am overwhelmed with gratitude right now. There are few words to describe how lucky I feel to be where I am in the space-time continuum today. Trying not to cry! You are amazing people and I hope I have the chance to be amazing for you when it's my turn.

update from the hospital, Day +1

well, it has been an awful several days, but I feel that we are nearing an upswing. I ate a real breakfast and didn't throw it up, I got up and walked to the ice machine without panting and passing out. Oh yeah, did I mention I passed out the other day? I was on meds that lower blood pressure and i got up to go to the bathroom and floooop! I just sunk down to the floor, luckily calling my nurse (i am pretty sure i said "mooooom") but whatever. It was a big emergency, they had to stick me with ekg thingies and kept smacking my face to make me stay awake, I was just sweating and freaking out. After that, they said no more lasix (the meds) and less fluid. I haven't had any emergencies since then! Jeeze louise though!

I wanted to say thank you to the people who have donated to my living fund, I am almost at enough$$ to fly mom here to be with me when i get out of the hospital (hopefully around xmas!). Thank you!!