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!!

update from hospital DAY -5

We mark the days as -5, -4, -3, -2, -1 and DAY 0 is stem cell day.

Then we start going up +1, +2, etc.

Not a lot to report today... just started my anti-nausea meds and steroids, and starting Ifosfamide chemo from 10AM-12Noon, Etoposide from 12Noon-4PM, and then Carboplatin from 4PM-10AM, then doing at all over again (for a total of three times!) It's a LOT of chemo. It's three times higher than what I normally get, and no breaks between drugs (they are using my two lines into the catheter (for fluids right now), AND my port (for the pre-meds). But 10AM Monday morning I will get unhooked from everything and take a shower (i will need it), then take fluids all day and the next day.

And on Wednesday I will get my life-saving stem cells back. I hope they have had a nice vacation in the freezer because they are going to have to work extra hard to make blood cells and replicate themselves over and over again. In the meantime I will be getting quite a few blood transfusions (probably red, and platelets, and I am not sure if they do white blood- i will have to ask).

Anyway, my room is awesome. It's all set up with stuff and feels cozy.

Allie helped me check in and set up my room (and brought me presents AND delicious healthy muffins), and Daphne came by later with a TON of books and stuff. I have such awesome friends!

My dear friend Noah's aunt wrote me a note which was soooo nice and helpful, about her husband (his uncle), and his battle with stage 4 lymphoma. He was cured by a stem cell. And not to sugar coat it, he had a relapse several years later but is doing fine. It's so helpful for me to hear that remissions happen to people with stage 4, and that relapses DO happen, but there is still treatment.... that's the kind of "hopeful realism" I am looking for.

heading to my temporary new home today...

I am checking into the hospital today...

think of it as a full-service (medication and food) dorm room.

Thursday-Check in/Fluids

Friday- Chemo 1

Saturday Chemo 2

Sunday Chemo 3

Monday and Tuesday- rest

Wednesday December 1st- Stem Cell Infusion! Don't let me forget to pay rent on this momentous day, haha!

Thursday December 2nd til the end of December- recover in hospital

January- Recover at home with special germ/diet precautions

After that things should be on the upswing!

why do my bones hate me?

well, we may have spoken to soon on the "things are on the upswing" stuff...

Robin took me to Apheresis today and brought me coffee and a scone (thanks!!!) and Emily picked me up and made me lunch (thanks!!!). Despite all this positive energy, another dismal CD34 count, even despite the very powerful drug Mozobil that everyone swears works.

I mean, really. I think people need to stop telling me about things that work for 85% of people because I have never been in that percentage. Remember, 85% of people are completely CURED by the first chemo they get in my cancer, not me. Another huge majority get a complete remission from ICE chemo (again, not me). Most people mobilize stem cells with Neupogen alone (not me), and those who don't DEFINITELY mobilize with this stuff Mozobil (not me- big surprise there!). Face it people! I am in the very small minority of folks who are having a hell of a time getting this thing out of them! Plan for the worst and stop giving me false hope!

After a gallon of salty tears and the weekly requisite "WHY ME?!" wailing and flailing, I dried my face, turned on 30 Rock for distraction, and shot myself with my 18th shot of Neupogen (it gets easier, btw, if anyone is reading this looking for stem cell stories, etc., the least you have to worry about is giving yourself a shot. Take it from someone who used to cry at the sight of needles! It can be done!). I got in a cab and went to the clinic, cried some more there to anyone who even acknowledged me (not trying to brag but I have lots of friends there, haha), and my doc made a surprise guest appearance right as I was whimpering about wondering "if it is all worth it" ... yes I DO get that melodramatic. And you would too!

He told me that while my stupid old bones did a bangup job getting the stem cells out, that they would do the transplant anyway. Yup. He said it just means that the recovery will be a bitch, and the re-infusion will take forever instead of 30 minutes. OK, THAT I can deal with, Doc! Come on I am a total badass in the hospital (all those drugs at your whim, who isn't!?). My biggest fear was being told that I will have to postpone or cancel the transplant.

He did try to tell me he was going out of town and wanted me to push back the date if I could, I told him, Sorry Joe, I have a date with my real life in mid-January and... I'mma let you finish, but thanksgiving day is the best hospital admission day in the world. So... no postponement. We are preparing for a Turkey Day Takeoff.

It WOULD be awesome if I can mobilize a few million cells tomorrow...

Erika is taking me and hanging with me!

first hurdle: jumped!

After a disappointing attempt at stem cell collection last week, a depressing appointment at Johns Hopkins, and then some low platelet counts to worry about, things are back on track.

My great nurse/transplant coordinator, Kathy, got all my pieces put back together - she got my insurance company to approve Mozobil, she got the apheresis appointment set up, the neupogen ordered and delivered, and the hospital plan set up! The part that depended on me was the blood counts... which I am happy to report were "excellent" today. Over 4 on the WBC, 10 on the RBC (I am shooting for 12 but it takes RBC forEVER to grow back, and considering all the blood I lost with the catheter/emergency room stuff last week, 10 is good enough for now! Platelets have shot up to over 140! Very relieved as they were under 40 last week. GO PLATELETS! That means my bone marrow isn't dead, haha, and so hopefully the week of building blood cells, PLUS the neupogen, PLUS the Mozobil, will get the stem cells out into the bloodstream on Tuesday morning. Please cross your fingers and toes for this one! They can do it again on Wednesday if we don't get enough on Tuesday, but that's it... eek!

Let's assume it goes well (as the doc, insurance company, and drug company all believe it will)... that will get me admitted to the hospital on Thursday! Thursday is Thanksgiving day and is also my brother Mikey's 25th birthday! A lot to celebrate. I think that day is meant to be, but I am still gonna keep my fingers crossed!!!

Thinking of Chris today, who got a not-so-good scan, and Karin, who had not-so-good platelet counts. Hoping they get some good news soon. It's the good news days, no matter how infrequent, that keep me going!

2nd Opinion = 1st Opinion plus Rads

Hopkins visit was good- but disappointing. The doc there said that she wouldn't want me on either trial she's running (for my own good!). She said that so far my treatment plan has been fine, and that my plan for stem cell transplant at GW is also fine, but that she would add radiation to all the spots I had activity when I was first diagnosed because she considers me "refractory" - that means resistant to chemo. So even though I had what I thought was a decent response to chemo, apparently, because I didn't get a complete remission yet, it's not good enough, and points to the possibility that chemo isn't really gonna work. HOWEVER, she said that stem cell transplant, plus radiation (which kills cancer differently and might truly be the best hope), is still a possible cure, and that there is no reason not to have hope and keep my fingers crossed. However, she was very blunt about the stats of this not working.

She said if/when I relapse, that I should come back to her to discuss an allogeneic transplant using my brother or father (my mom might have cancery cells). I think I will probably go down to see Dr. Younes at MDA also, to see what he would recommend. I have a gut feeling that I don't want to do an allo transplant until I really, really have to, and that I would rather try a clinical trial OR the doc at Hopkins mentioned that SGN-35, which is showing great results for people in my situation, might be FDA approved by the time I relapse. So, I would hope that is available to try somewhere close to home. In addition, the next "hot" trial (from what I can see) is RAD001, which is currently being tested at Georgetown. I would love to get treatment in DC and not have to uproot, but of course I will follow any path that leads to a potential cure (as long as it doesn't destroy my quality of life- which I feel I have the right to preserve).

Going back to Dr. T today to talk about next steps in trying to get my stem cells out, discussing the drug Mozobil and a new schedule for transplant. If mozobil fails I am guessing they will do the bone marrow surgery and get the stem cells out from there (NOT looking forward to that, so please send a shout out to my bone marrow to get those stem cells out into my blood this time!!)

That's all for now, folks. Stay tuned!

setback

we hit another wall today. apparently two days of apheresis has produced a pitiful amount of stem cells. The doctor just called and said he doesn't think it's even worth trying tomorrow. I am upset, of course, i mean, really how many more things can go wrong before you start to wonder if you are fighting a losing battle?

they are giving me a week off to recover (my platelets dropped a lot), and then trying a different drug called mozobil to see if that works to get the stem cells out. I honestly don't know what I am going to do if this doesn't work, but my records are still at Hopkins and I have told them I am interested if they can fit me in. Now that I have an extra week, maybe I will be able to go.

My fear is the cancer growing inside, each day that passes without chemo is just allowing it to spread, and all these complications are really breaking my spirit. Nothing has worked out as planned or hoped for since I was diagnosed, the first treatment that cures 80% of people didn't work, the second treatment didn't completely work as it was supposed to, the catheter bled out twice, and now I am not mobilizing stem cells. I don't know if this the building of an epic survival story, or harbingers of a lost cause.

I am going to Oaxaca tonight with Benjamin and lunch tomorrow with Allie. I have to talk to my Board of Directors tomorrow night and convince them my project is exciting and successful. Somehow I don't feel very excited or successful these days.

thank you to everyone who has offered to help me during the stem cell transplant, I really appreciate it!

Thank you Phyllis, Noah, Erika for the rides so far, and Allie, Robin, and Beth for the future rides! And thank you Kate for the last minute gatorade delivery last night, I owe you! Thank you to everyone who signed up on my helping hands site just to see if there is anything they can do, that means a lot in itself! Thank you to everyone who has sent a message of support. I am doing my best here, but you're giving me extra strength!

I also want to give a special shout out to Benjamin in case he's reading: thank you for being calm and buttoning my bloody shirt and putting on my shoes and calling an ambulance and waiting with me in the middle of the night. and for immediately washing my bloody sheets so they didn't stain without me having to ask. I thank my lucky stars on a regular basis that we live together (and for more than just the food you cook!) You have brought nothing but awesomeness to my life since you moved in.

Everyone, have a great day!

PS Apheresis day two went well, but I will indeed have to go back tomorrow for collection again. And I will have to get a platelet transfusion later today... ah well! :) Nothing hurts anymore now that they're using the catheter! :)

Well, I am still here (warning: graphic!)

Went to get my catheter placed on Monday morning, and everything went well as far as placement, etc. Came back to recovery room and had some bleeding. They put pressure on, the docs came to look at it, and I was released. Phyllis had just dropped me off and made it back to her house when I called her in a panic. As I got up the stairs and went to change clothes, I noticed the blood had started again. I sat down (well laid down)... huge mistake! the blood started pouring at that point. I called Phyllis back and she turned around to come get me. One hand on the wheel the other reaching for the roll of paper towels (sorry I ruined your passenger seat, Phyllis!) trying to sop up the blood. I made back up to the PACU where I instantly recognized my great nurse from earlier that day and just whimpered/cried "please can you help me?" and when she said yes and grabbed my wheelchair I just let it all go and whimpered for what seemed like forever. Even when the hilarious interventional radiology attending came back personally to hold pressure on it and clean it up, and he made me laugh, I was still pretty scared. Then they shot the area with an epi/lido injection that numbed it and constricted the bleeding, bandaged it up, took my vitals for an hour, and let me go.

I got home, ordered dinner, took some tylenol and fell asleep, exhausted, at 8PM. At midnight I heard the door rattling and it woke me slightly, just enough to be aware of my surroundings (thank the universe for timing). I felt what I thought was sweat but when I put my hand to it, my hand was covered in blood. I was bleeding like a machete wound to the chest (or so it looked). Luckily for me the rattling at the door was Benjamin coming home. I came downstairs and went to the kitchen and was like. I. Need. Help. and showed him the blood. He didn't freak out at all! He said "what should I do?" and I said, call 911 and get an ambulance and I am going to go up and back a bag for the hospital. He helped me put on my shoes and my previously bloodied shirt (I packed a new one), and then helped me get into the ambulance.

Once I got there I had a nice team of docs who tried the pressure method, which worked for a second (long enough for them to clean up the blood on me and my arms and trash my shirt and get me a gown) and then the bleeding started again. My ER doc was great. He was like, "mmmkay, this ain't gonna work honey" and said we would do more epi/lido. I asked for something to calm me down or help with the pain that all the pressure had caused, and Nurse Amazing brought me ativan and morphine together (hallelujah). Taking the needles of lidocaine and epinephrin were easy at that point. Then he said we would use this piece of foam that melts into a gel when it hits blood, and acts as a dressing to stop the bleeding, then he would put in a purse stitch to close up where the oozing was coming from (or where he thought it was coming from anyway, no one really knows... scary).

well, that all worked out pretty well, he watched it for a while, I fell asleep, he came back and bandaged it up and then asked me if I would like to just stay there in the ER and sleep for a couple of hours and then have Noah pick me up there instead of my house... to take me to apheresis! The docs had decided I should definitely go ahead and go to apheresis, despite all the blood loss, and I was really happy the timing worked out (if I had woken up at 3AM instead, I wouldn't have made my appointment).

Anyway! Noah came, we had coffee, we chatted, he got me to the doc on time, and i started apheresis. The nurses there were amazing, and the facility was nice. The machine was CRAZY gigantic, but having the double catheter was so sweet, I am not even kidding. Not having to get poked at all? hell yes!

they processed my blood through the machine 4 times (my entire blood volume x 4!) and it catches stem cells and a few platelets. I was shooting for "3" for the total procedure. I am not sure what that number means... I am gonna ask tomorrow, but my nurse called me tonight to say I got "3.9" so yay! She said that means I will go in tomorrow to get more, but they will be my insurance stem cells, and that I have enough that I am not likely to have to go in Thursday (unless something goes wrong tomorrow). Double yay!

So despite the horrible bleeding scare, and the pain, and the ambulance ride, damage to my sheets, having my roommate have to button my bloody shirt over me, etc. the positives do outweigh the negatives! A catheter has been an incredible convenience, and the stem cell collection was a success! And the bone pain has gone down a lot too since the first couple of days.

My next worries are really just keeping this catheter tight, clean, etc. so the wounds can heal, getting things ready for the hospital room (I will need help shopping, as I don't think I will be able to lift things, carry things for a while!). But one step at a time. Feels like I keep hitting stumbling blocks, but eventually get back up and keep moving forward!

storytelling is awesome.

looking forward to tonight's "Moth" series installment on WAMU. I will miss Radiolab, but this is pretty cool (storytelling). http://wamu.org/programs/special/10/the_moth_series.php

More stories from The Moth here:

https://www.themoth.org/index.php?id=4

Update November 2010 (sorry it took so long!)

So, I am getting an autologous stem cell transplant to try and cure me.

Catheter Placement (yay for a matching prison scar on my other collarbone!). Monday morning. Going w/the awesome J.Z.!

Tuesday morning- Noah is dropping me off at the apheresis place so I can get some of these stem cells scooped outta my blood, and on the way I think... milkshakes and bacon sandwiches.

Wednesday- I get the lovely Ms. Erika for my company for apheresis day 2! woo!

Thursday- Allie!! My long, long-time friend (what are we at, like, 14 years?) is taking me to either apheresis or something fun instead, if I can squeeze out enough stem cells on Tuesday and Wednesday...

Friday 12th- Wednesday 17th I get to rest, pack, plan, get things set up, etc. for the hospital

Thursday the 18th- Robin has offered to help me get the hospital and settle in! Should be an easy day, so people are definitely encouraged to stop by!

I get my high dose chemo/other drugs from Friday to Monday, a break on Tuesday, and then on Wednesday November 24th, I get my stem cells back and my body gets... uh... restarted?!

I will prob stay in the hospital for another few weeks, building up my blood counts and immunity, and here's what will get me out faster (that I have control over):

- exercise, walking around, sitting in a chair instead of my bed, etc. I would love some of our visits to be walks around the cancer ward!

-eating (e.g., tolerating it without getting sick), so we are talking crackers, oatmeal, cooked vegetables, whole grains, etc. and NOT cupcakes and candy (unless I beg you!) because I won't want to eat much so it should be healthy when I do!

-making sure my awesome visitors aren't sick when they come see me

I was thinking of games we could play when you visit: cards, writing games, scrabble, etc. but if you have 2 person games, bring them! They say the biggest issue in the hospital is boredom...

i know every blade of grass

Translation from a great poem by Jose Marti (this is just a bit of it, the beginning is much more famous than this part). But this is the part that speaks to me today:

I'm a traveller to all parts,
And a newcomer to none:
I am art among the arts,
With the mountains I am one.

I know how to name and class
All the strange flowers that grow;
I know every blade of grass,
Fatal lie and sublime woe.

I have seen through dead of night
Upon my head softly fall,
Rays formed of the purest light
From beauty celestial.

meningitis. slight detour!

well, this is all very dramatic but I had to go to the ER twice in one week with terrible headache and nausea... blinding awful horrific pain, ER quality. They, after MRI, CT scan x2, spinal tap x3, xrays, teams of infectious disease docs, neurologists, oncologists, radiologists, internal medicinists, nurses, techs, aides, and transporters, diagnosed me with aseptic meningitis (aka an illness that can only be treated for symptoms til it goes away. rad.). So lots of pain drugs, steroids, fluids, potassium and magnesium, and whatever else they wanted to string up in the IV.

It was fine. But I kind of hate the hospital now. :)

Home and working now, but on percocets... I can do most things i need to do, just REALLY slow. :):)

Had some great care from my nurses, Fridge, Saif, and the housemates, so all you long-distance readers, don't worry.

PS I shaved my head. Yup. It's all gone. And it feels so much better.

OK, next chemo delayed until probably Monday (gotta get a break!), but stay tuned.

Love Tiff

25% DONE!

I wanted to wait to blog until the day I woke up and felt completely normal, with no urge to take anything- tylenol, rolaids, pepto, anti-nausea meds, etc. They're all in the drawer for now. Woke up and felt... ok!

So, that's how it will go then, I suppose. Monday mid-morning, check into the hospital (it was fine, private room and bath, nice nurses, etc. just need more things that are pretty and smell good, because the hospital smell and taste was grating on the last day and I kind of lost it emotionally...); Tuesday and Weds get all kinds of chemo, Thursday get fluids and the wbc shot Neulasta, my favorite, and then go home Thursday afternoon.

Basically Thursday afternoon I really, really wanted to shower (and cry in the shower, hahah), eat a burrito from Don Juan's, and sleep. I woke up Thursday night and felt OK and even went to a b-day party (water only! and wanted to sit down! but still, able to participate and meet people), Friday day/night was a totally chill - didn't go anywhere, watched movies and relaxed and tried to drink water-- had some painful skin like last time, the tylenol can take a little of the edge off of that but not much. Saturday the pain was pretty much gone, just lingered in a few places, and I spent the day with Fridge eating tempeh (he gave me extra coz he's sweet) and watching movies while he sorted files (which was pretty great b/c I got to spend time with him, he didn't feel guilty about not working, and I didn't do anything that made me feel sick, hahah)...

but then all of a sudden at dinner on Saturday night I got a pretty bad few waves of nausea (I drank maybe two sips of wine), we went home, I chilled out, and then after an hour felt better, we got to the bar (again, water only!) and it hit me again, which sucked because I was talking to a really nice girl who was making conversation with me... "oh yeah, I grew up in Florida" sweat, sweat, sweat, "sorry I have to go" and I ... ran away. Luckily the dudes at the bar were not boneheads and all got out of the way so I get to the bathroom. I didn't really do anything, I just needed to sit down and there was no place to sit other than the toilet. So the wave passed. I got up, got more water, Fridge held me up against him (sweet), then I found a seat on the bench. It was perfect, I could be part of the party but didn't have to stand up. Fridge's bud had a birthday that night and his gf wanted us to marathon with her, so we went all night (again, water all night, and it was actually still fun and makes me wonder why people drink at all! I was having pretty much the same fun if not more b/c I was on top of my game), felt ok for the rest of the night (sitting), and started to feel unwell at the very last minute (the 3AM walk home) and that was because of the heat. Heat has always been my nausea trigger, so having chemo in the summer is pretty much a disaster, haha! Luckily, I have A/C and Fridge was fried, so we just passed out in the cold air and slept pretty well.

Sunday was great- didn't do much in the AM, helped Mere get some stuff for her new apt., had some Wendy's (yum, don't judge) and got some quality Sunday night time with Fridge watching this show that Saif told me about called Skins.

Had good dreams, woke up feeling okay, and now gonna do some work!

Next up on the adventures is someone's birthday ;) ... followed by the next round of chemo (Aug 2-5), then some fun things happening in mid-August like hotels, my aunt and uncle visit, and some days at remote house in shenandoah... one step at a time, one day at a time! :)

xoxo!

Hello end of June!

You guys!

First of all, Vienna and Prague were amazing, I will try to upload the photos soon. I got to see some beautiful things, meet some great people, and had a lot of time to think about life and reflect.

Then I had two great days at home, saw a futbol game with N and a couple friends, and went to a bbq. Then I was off to Detroit for the US Social Forum for the week. Again, saw some beautiful things, met some great people, and had time to think. I am excited about life and work and hope that I can keep up the energy and momentum that we left off with there.

N picked me up and we went to Baltimore. It was my first real time there, other than the time that Chris Mulligan and I saw a metal show at some bar and our car broke down and we got a ride back to DC with the band...but that's a whole other story.

THIS baltimore experience was so great!! We got a sweet hotel, had some amazing dinner at the woodbury something, had some great beer at brewer's art, slept in, had some coffee and watched the Germany-England game, and then we met up with Dani and Andrew for some really delicious brunch!! Then we went on a submarine tour, drove home, took a nap, and had Mexican food. I am pretty sure that this qualifies for one of the top awesomest birthday weekends. Sigh.

Gonna watch my True Blood then get back in the game for a week of hard work!