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!

Of every man who put me here...

Does knowing the exact nature of an almost certain disaster make it easier to absorb? Ignorance is not just bliss, it's necessary in order to take risks. Without the warm and fuzzy safety of ignorance, we are just willfully self-destructive and pitifully foolish, yeah? Hoping to see that light come shining, any day now...

They say ev’rything can be replaced
Yet ev’ry distance is not near
So I remember ev’ry face
Of ev’ry man who put me here

I see my light come shining
From the west unto the east
Any day now, any day now
I shall be released

Standing next to me in this lonely crowd
Is a man who swears he’s not to blame
All day long I hear him shout so loud
Crying out that he was framed

I see my light come shining
From the west unto the east
Any day now, any day now
I shall be released

it's 4AM

and I can't sleep... so... i am watching the wire and waiting for someone to wake up

list of fictional people i am pretty sure i am in love with:

stringer bell

lt mcnulty

sonny corleone

... vito corleone for that matter

eric from true blood

russell brand (ok he is real).

list of my favorite foods:

vegetarian swedish meatballs, mashed potatoes, and lingonberry preserves

black beans and rice quesadilla at don juans

vegan wrap at asylum

indian food at nirvana

list of my favorite bands:

velvet underground

beatles

dylan

beirut

list of some more favorite things:

being outside

going fast

kissing

dresses

Also

1. I have awesome friends

2. Refrigerator gives me butterflies

3. I am going to Europe in 10 days!

The Dark Side of Chocolate - DC Screening Tuesday 6/7!!!!!

June 8, 2010

7:00 PM

SEIU (1^st Floor)

1800 Massachusetts Ave. NW

Washington, DC 20036

In advance of World Day against Child Labor on June 12, join us for a special screening of the new documentary The Dark Side of Chocolate.

Shot in Mali, the Ivory Coast, Geneva and Vevey, Switzerland, Miki Mistrati and U Roberto (Robin) Romano launch a behind-the-scenes investigation into the allegations of child labor and the trafficking of children in the international chocolate industry.

Following the film, there will be a panel and discussion with Bama Athreya (Executive Director, International Labor Rights Forum),

Todd Larsen (Corporate Responsibility Programs Director, Green America)

and U Roberto (Robin) Romano (Director, The Dark Side of Chocolate).

Sponsored by: Africa Action, American Federation of Teachers,

Break the Chain Campaign, DC Fair Trade, Foreign Policy in Focus,

Freedom Network USA, Global Exchange, Green America,

International Labor Rights Forum, Organic Consumers Association

*PLEASE RSVP to Tim Newman at tim.newman@ilrf.org or 202-347-4100 ext. 113 and please bring a valid ID with you to the screening.*

For more information about the film, please visit: www.thedarksideofchocolate.org.

Reactionary Rant.

This flotilla attack in which nine innocent people, on a peace mission to deliver aid to Gaza, were murdered, has gotten me more riled up then I normally get. I have gone to Israel, and I have a complicated relationship to judaism, but never once have I strayed from my belief that all people have the right to land, freedom, and safety. Yes, I do in fact find it tragic when innocent Israelis are killed, too, but I have a stronger reaction to Israel because I feel they have become a hungry beast and a bully.

There is something so fundamentally wrong here: kill more people than the other side in a war, and that gives you the right to kick people off their own land and make them prisoner. Are they supposed to feel grateful when you shut them out of all ways to self-support and then pick and choose what aid you will allow? This is what USA did to native americans (including my own great grandparents), it's what Europe did to Africa, it's what Israel did to Palestine. All sanctioned at the time by co-imperialists and all OK with international law. Are we so inured to this kind of greed that we don't even notice there is something FUNDAMENTALLY wrong here? Why do they need to build houses for wealthy americans to come settle land that doesn't belong to them? I do believe that the world should have intervened in WW2 and created a safe space for the Jewish people, it was clearly necessary after the Holocaust and they were clearly being persecuted. But... I believe it could have been done differently. And anyway, WHO made international laws? Certainly not the people being subjugated. You might have the "right" to an attack a peace mission, but you're still a giant asshole for doing it, EVEN if the other side is throwing bombs. SOMEONE has got to stand up for peace, justice, and humanity or it will never end, right?

I can't help but feel that at the end of the day, money, politics, borders, guns, religion, they are all made up by humans to justify our cravings, and they are all junk. So, swallow your pride, throw away all your justifications, and do the right thing. Put down the guns, pick up some flowers. Put down the patents, just give the information away. If people lose motivation when you take away their "500x the average worker" money, isn't that the tragedy?

sorry, tangent. Anyway, killing people sucks. Stop it. Everyone. Please.

show some guts, stop the cuts

Vincent Gray is running for mayor. He may be better than Fenty, but I am not yet convinced. Why won't he stand up for DC and save our safety net?!

Check out this WaPo article

If you're disappointed too, tell him here: bit.ly/csEa3O

for more info on the issue:

check out Save our Safety Net

Today was a big day:

Started off with a meeting w/the Department of Labor to discuss the proposed Convention at the ILO on Domestic Worker Rights. The USG* is pretty progressive now, and their draft responses were incredibly close to ours. We had a couple of sticking points, but overall we are looking forward to an ally relationship with them at the tripartite discussions at the ILC in Geneva this June. The process of drafting and ratifying a Convention is long and somewhat complicated, as states try to balance between "meaningful" and "ratifiable" but it seems like we are looking good in the days leading up to the first set of meetings.

*USG in this case is the DOL-ILAB, under direction of a woman who used to work for Human Rights Watch :)

After that meeting, booked it back over the AFL-CIO to listen in on a women's delegation (made up of big and small women-focused NGO's) to strategize about Arizona's horrible new law SB1070 as well as 287g -- the goal of the delegation is to put the faces and stories of women and families in the forefront, to show the true human destruction that these laws are capable of. Families being torn apart, mothers taken away from children, a climate of insecurity, and in general, PUNISHMENT. Punishment for being women, mothers, caregivers, who came to the US to earn money to take care of their families.

We are in the process of meeting with congress, and pushing them to support a public hearing where these stories can be told to the public. We are also pushing for a meeting with Michelle Obama and some of these women, all in the pursuit of a Presidential Executive Order nullifying the legislation.

Stay tuned on this, but in the meantime I want to plug:

altoarizona.org

puenteaz.org

And in particular, if you can get down to Arizona on May 29th- there will be a huge rally there that this women's delegation is helping to put together. We are also looking to link to local actions so if you know of something in your town, pass it on!

There's also going to be a blog carnival thing (simultaneous topical blog postings from different orgs) but I forgot the name of the organizer of that one and will update later.

------

Now I am at home reading til my eyes fall out for this report...

Counting down til the big room move this weekend! Can't wait to wake up and see some treetops and sit in my rocking chair in the afternoon sun...

---------

PS: I love you guys! Happy Almost Birthday to Annie and Trang! And Shelley- safe travels back to India! I will send you a postcard from Europe to your ATL address.

ah. hi family. DC is heating up and my weekends have been increasingly awesome.

Friday was low-key, had some writing and reading to do on this, and needed to sleep off the week.

Saturday was great- checked out the mt. p farmer's market and read some more, watched the Godfather pt 3, and then Samboni Peppleoni came over to hang out in the front room with me and hear my new Michael Hurley records and try Fridge's durian candy (which... he liked. And took a second piece for the road! yikes!). We also remembered a portmanteau we made up

"cele-brasion"

Did you guys know that Tonic has a vegan menu?! Saif told me about it a couple weeks ago but I just had the chance to try it. It's apparently new- I had the risotto (beets, broccoli, garlic, and shiitake) and it was amazing, Fridge had the ratatouille but they were out of the vegan polenta stuff so he had some w/cheese in it (it was delicious... sorry vegans!). Then he took me to a secret location in Adams Morgan that I promised not to reveal, but there was a good jukebox, open pool table, and $11 dollar pitchers... and no annoying people... and it was Saturday night. My lips are sealed on this one, though. Love that he grew up here and knows lots of interesting places in DC and where things are around town. I am really starting to love it here so it's nice to get some more history and orientation...

Today was perfect. Slept in verrrrrry late, had brunch at my favorite place (though they were out of tempeh), got a rug from IKEA and had ice cream at a surprise location. Blueberry cheesecake ice cream, for the record, is amazing.

I need a nap.

Here's what's on tap:

Monday 8AM- sw supervision (desperately needed- bit of a rough week with clients last week), 1PM- ILO Convention meeting at the DOL, 2PM- AFL-CIO meeting, 3PM- Freedom Network call to present the survey I worked on w/Safe Horizon. Monday is going to be exhausting. Tuesday my new intern starts and the rest of the week I have to get things finalized for the NDWA meetings and the Barnard report. Then the big move happens on the weekend! Mere moves out Saturday night, and Benjamin and I are using Sunday and Monday... counting down!! :)

Busy... but ready to buckle down and be productive on weekdays so I can indulge my weekends- from secret saturdays to siesta sundays!! :D

Gourmet IKEA

Vegetarian swedish meatballs? Yes. Delicious. Made of lentils and mushrooms and served with lingenberry and mashed potatoes. Fridge took me here last night: http://www.domkucafe.com -- never heard of this place before! Loved it! The decor looked like an Anthropologie store, the food was gourmet IKEA, the music was Sea and Cake, the beer was cold and Belgian, and the conversation was deep and satisfying and came with presents.

I learned how to read an airspace map and tried the most disgusting, awesome candy ever: durian. Have you guys heard of this monster? Fridge says it tastes sweet to him, but I didn't taste any sweetness at all! SDG said it had a sweet aftertaste but a pretty horrifying foretaste. I thought it tasted exactly like what I remember pot roast and onions to taste like the last time I had it (maybe ten years ago or longer?), though now that I am burping it up I do taste a hint of sweetness. Thank god my other present was chili-laced chocolate.

Right now I am Tryst, checking out facebook, avoiding some serious edits to the Barnard report and debating a second cup of coffee. I haven't been out the door this early in a very long time. Not sure how to pace myself.

Our house picked a new housemate! His name is Benjamin and he seems great. Mere signed her lease last night... this is happening! I am going to miss her, but a) she is moving a block away and b) I have been practically drooling over that bedroom. I CAN'T WAIT TO MOVE IN! I daydream about hanging curtains. Is that weird? I need a ride to IKEA to get a rug and some tension rods, actually, on that subject... She told me last night that I should expect the move to pretty much change my life. Not that my life is really all that bad, but boy a change of scenery always does people good, right?

Results from the FNA came back today - looks like 3mos of a new chemo starting July 12th (3-4 days inpatient tx, 2-3 days of side effects, then two weeks off that should be normal work/play as usual, repeated three times) and stem cell transplant around October. Totally ready and not scared at all! It's going to suck to be all chemo-ed out again when it's still 200 degrees outside (DC summer is pretty awful), but hey, that's why there are air conditioners, copious drugs, and ice-cream bearing friends (come home Noah!!). At least this time we will be pretty much obliterating my insides and starting over with new blood so it's gotta work, right? They call the stem cell transplant day your "re-birthday." Funny.

Some fun adventures ahead though: my first trip to Europe, expenses paid by the Organization for Security and Cooperation in Europe means I will be in Prague for 13-16 June and Vienna 17-19 June. So awesome! Then I have to hit the road 21 June for Detroit and the US Social Forum. Back just in time for my 28th B-day on June 29th and I expect some kind of party. Oh and the annual 4th of July here should be nice.

OK, back to work, or, at least, pretending to work while I try to wish away my writer's block...

FNA went very well! Saif was with me though he couldn't hold my hand because the resident was doing the needle stuff on one side, and the attending (Dr. Hill) was on the other side next to the ultrasound machine. They decided to skip the sensitive cervical area since there's just too much stuff going on in my neck (veins and arteries and whatnnot), but the excellent Dr. Hill (seriously GWU, you are awesome), found a nice piece of lympho real estate in my chest (parallel to my port). It was somewhat deep but easy to get to thanks to the relatively unexciting nature of that part of my insides and the ultrasound assistance. Three needles for the aspiration, and three clicking pump thingies for "core" samples, just like climatologists use on ice, hahaha... LOTS of local anesthetic, and very little pain (some discomfort in the anesthetic delivery and the pumping was WEIRD as usual). Still thinking of asking for some sedatives for the bone marrow biopsy because the IDEA of these procedures is what gets me worked up.

After effects were a bloody bandaid, replaced by a superman bandaid that was bloody, replaced yesterday by a new, smaller superman bandaid that was NOT bloody, and a not tiny needle hole still there.. so keeping it covered for asthetics til it scabs and recovers completely. Still a little bit sore deep in the chest there, but nothing serious.

Results next week via phone with Dr. Tabbara, but of course we all expect to see the dreaded Reed-Sternberg cells and to proceed to ICE chemo, but he wants some hard evidence, which is nice, and this procedure wasn't that bad so I let him do it. ..

check in after phone call!

In the meantime, here's a list of things:

1. my new yellow dress is amazing and I can't wait to wear it for Farrah's bday brunch on Sunday!

2. i cant stop listening to broken bells, xx, and passion pit -- going on over a month now. send me some new music obsessions!

3. met some of Refrigerator's friends last night, they were great and I felt great being there, and I am pretty happy today!!

Have a great weekend!!

PS:

Update and Today's Science Lesson: Flow Cytometry

Today's science lesson was inspired by a nice phone call I got from the lovely Valentine, Dr. Sedaghi's nurse. She called to tell me that after talking amongst themselves, the doctors and surgeons decided to go for another Fine Needle Aspiration (FNA) rather than an open biopsy under general anesthesia. I am fine with that because a) no anesthesia and b) everyone's 99.9% sure it's relapsed so why put me through an unnecessary surgery? oh and c) no new scar. I have plenty.

At this point, because of the strong evidence in the PET scans, if any Reed-Sternberg cells show up in the FNA samples, that's that. I will get a bone marrow biopsy to make sure there's no marrow involvement, then ICE salvage chemo followed by an autologous stem cell transplant. I have asked if we can start in July so I can have some time to get things settled at work and home, and so far they're on board.

Anyway, along with my FNA I will be getting "flow cytometry." Now, I have gone through a few interesting procedures, but hadn't heard of this one. Valentine assures me it's non-invasive, but I still felt the urge to google it. Turns out it's just some machine they are going to use to check out the cells, but it sounds pretty cool.

Here's the link:

http://en.wikipedia.org/wiki/Flow_cytometry

Hope you enjoy!!

I will report back tomorrow. Saif is going with me for the FNA. It doesn't feel very good (but relatively speaking... it's a breeze), I just need a hand or two to squeeze and some loving attention! :)

brief check in

chemo finished, took a nice long break, had a scan in February and it came back inconclusive instead of clear! :( \

Took some time, panicked, cried, and regrouped. :)

PET scan on Monday April 19th, 2010, and I hope this scan yields some conclusive results! If they're bad, at least we know so we can plan for round two of treatments... if they're good (or non-bad, really) then we wait and see and test every few months.

Trying to get everything I want out of life before I have to do a second treatment, so I am hoping for a July start date at the earliest!

Stay tuned, results on April 26th and we'll go from there!

chemo 11 update

CHEMO #11 DONE!

I am at home resting/working comfortably (well, as comfortable as possible given the chemo/white blood count shot and all the side effects). In addition to the minor emotional turmoil I have had to deal with over the past two weeks... yikes! But, all for the best, I really believe that more and more as each day passes!

Anyway, back on topic:

Wow. One more to go. I won't know if I am non-cancerous until January when I get my last PET scan, and we will go from there. I don't know what the next steps will be if there is still some cancer left inside. The options will include radiation, and/or a different (more intense) kind of chemo. If those don't work, there is a bone marrow transplant that can be performed. My doctor assures me that no matter what happens re: treatment, he will figure out how to cure me. This gives me a lot of confidence (though of course I would reeeeeaaallly love your support in sending the vibes to the universe that this was it and I will be done with all this and put it behind me come January!).

how i feel today (replace xkcd with tiffany)

Positively Fourth Street is just about right

Dylan's my favorite poet:

You got a lotta nerve
To say you got a helping hand to lend
You just want to be on
The side that's winning

You say I let you down
You know it's not like that
If you're so hurt
Why then don't you show it

You say you lost your faith
But that's not where it's at
You had no faith to lose
And you know it

And now I know you're dissatisfied
With your position and your place
Don't you understand
It's not my problem

I wish that for just one time
You could stand inside my shoes
And just for that one moment
I could be you

Yes, I wish that for just one time
You could stand inside my shoes
You'd know what a drag it is
To see you

-Bob Dylan, Positively Fourth Street

exhale

Well, today was... interesting.

My PET scan results are in: the nodes in my chest (mediastinum) have started to shrink a lot. and the cancer in my spine has been "resolved." That's great!! I was hoping for more impressive results, but this seems to be about 80% remission, and I still have four infusions left. I will get another scan at the end of the treatments to make sure it's all gone (and if not, to discuss radiation for the remaining bits).

I realize I haven't updated this thing in a while, but my mom just asked for the link so I am gonna do a quick recap:

chemo #8 went off without a hitch. Except ... my favorite nurse, Heather, is leaving to go back to Cincinnati and that is pretty depressing. I have gotten a bit attached to her. I love the other ladies there, though, so I know it will be okay, but she was just so good at not hurting me... Sam brought me greek food and I totally ate the HELL out of it. It was delicious. He read me a story from the newspaper and it was pretty interesting! And to be continued!

I almost forgot to get my anti-nausea meds, again, but remembered about a block away so crisis averted. Friday I had some crazy ass meetings at work that made me forget to go back to the doctor and get my white blood count shot. This caused me some mild panic as it happened right in the EFFIN' MIDDLE of swine flu season, hah. I called the doc and he told me no dice, had to just go without it this time and to not get sick. Got it. So I have been working from home this week. Going in for a blood test tomorrow (Thurs) and we will take it from there. 

No real side effects from the chemo this time out of the ordinary-- sore and tired, but really guys, compared to chemo #1-4, this portion has been mild. 

epic PET Scan on Tuesday November 3rd at 9AM. Results on Thursday November 5th. I am gonna reserve my freaking out until the morning of the 5th, so please don't make it worse! I am sure it will be a good result. Let's keep positive.

That's all for now! 

Love,

T

Lockup: Raw

ah yes. the halfway point. six of twelve scheduled chemotherapy infusions have been completed and, as per the usual unwinding of my life, i find myself at times completely overwhelmed with fear of death and failure, and at times incandescently happy and forgetful of mortality. This post is to celebrate the ever-growing number of moments i am spending in the latter. 

Now that I have learned to manage the side effects of cancer, innumerable, as gracefully as possible (and to forgive myself when it is not possible to be graceful), my fear wanders to what happens next. What happens when the october scan comes back and there isn't any improvement? Or when my hair really does fall all the way out? Most of my time, however, is not spent wallowing, but rather spent in oblivious joy, pondering life and my place (certainly a vain exploit but one that provides endless entertainment for a curious mind).

The past few weeks since Fall has descended have been inexplicably rhythmic, the world has rotated a half-turn and suddenly everything marches in step. Words and ideas and people and films and the stories read aloud to me have entered the space within which I exist; once so solidly established (know thyself!), transformed so subtly by rhythm since the brutal summer's cacaphony. Nothing new on the outside save falling hair, but the inside churning, peacefully, if that is possible, to this new heartbeat. Imperceptible except to me and now to you, reader, as I confess it. To describe the change simply: I am feeling more and more blissful with every moment of uncertainty that passes. I have found a way to drill joy from a well of fear, knowledge from ignorance, and it is intoxicating. 

I am excited by life and what might happen, graceful or otherwise, knowing that fear, disappointment, relapse, impatience, frustration, are all part of it. Their presence, in unpredictable patterns interlaced with sweet and loving joy, makes the contrast rich and more meaningful. Makes life more meaningful. 

And so it goes...

 

exceptions to the rules

I am pretty sure that Legends of the Fall doesn't count against my no tv during the week policy. Right?  I mean, if you can't make exceptions for brad pitt with a ponytail and  horse, then you're too uptight....

Why Pamper Life's Complexity When the Leather Runs Smooth on the Passenger Seat?

I took a break from chemo and pushed everything back by one week so I could go out with my buddies to Shenandoah (pics to come later on today or tomorrow). We arrived around noonish? to Loft Mountain and all the campsites were full! We had two cars full of beer, veggie burgers, copious chips and dips, tents, sleeping pads, etc. all roughly packed with the assumption that we would be parking about 50 feet from where we were sleeping. Alas, Plan B: I was incredibly impressed with Jake's nonchalance to the point where if any part of me had even an inkling of "what are we gonna do now" it disappeared when he pulled over, sauntered over to the driver's side of Saif's car and said "so, let's just keep driving up to the campsite and see what happens, and if not we can just do backcountry." I was quite satisfied with that attitude and went back to loving the sunshine and breeze in the convertible. 

No dice at the campsite gate, but a nice ranger gave us the rules for backcountry and told us to try again for a site in the morning. We checked in at the check-in place, and went on a scouting mission. Decided on the Frazier Discovery Trail and found a sweet flat spot to set up our tents. It was me, Saif, Jake, Galen, Mike, and Jack Daniels, of course. All went smoothly until night started falling and a (really, really nice!!!) park ranger came upon us and noted that we were a little too close to the edge of the 20ft from the trail rule, but we compromised a bit and he said goodnight. I really liked that ranger guy. That night we just packed in our essentials (read: beer, beans, headlamps, tents, sleeping bags/pads) and left the rest in the car. All was well. 4AM the rain came and we scrambled to put the fly on (I should say Jake, Saif, and Mike did, and I pulled in some stuff into the tent, I am not that functional at 4AM...). Slept great after that. We woke up a bit early (9AM) to pack out and to try and get a campsite. 

We arrived again at the campsite checkin place, scouted around and found a good empty site, and the same nice park ranger with an inexplicable set of bandages on his face and arms declared excitedly that we had found a real gem that overlooked the valley and had an unobstructed view of the sunset. We were pleased as punch. We settled in, pitched tents, loaded up the bear box, and laced up our boots for a really nice hike. 

I think it was about 8 miles? There were some cool waterfalls, or waterfalls that would have been cool if there was more water, hahah), but Jake and Galen were able to at least put their feet in the water, and we all ate peanut butter jelly sandwiches and chocolate granola bars on the rocks, and made some other "pit stops" ...

I was pretty exhausted when we got back to the tents and I was ready for my beer and french bath (e.g., strategic wet towel in the bathroom followed by deodorant, teeth brushing, and face washing). It was good enough for me to work up an appetite for that vegan sausage. Mike manned the grill brilliantly and then we drank a bunch and played Asshole. I am actually not too bad at that game, but I think Jake was the clear champion... Time to crash out again and I slept brilliantly. Woke up with some wormy dudes under my sleeping pad but wasn't too skeeved about it. It's the woods. Packed out Monday around noon and had a great drive home with a few pull-overs for some nice views. Around 2PM in the convertible, somewhere about 30 minutes from DC maybe, it started POURING. Saif can't put the top up when car is in motion, but he deftly pulled over and put it up. I was laughing so hard that i was crying, getting completely soaked, and thinking this was the perfect end to the weekend...

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

Chemo #5 Update:

So, had my chemo on Thursday. Everything went exactly as planned. Heather, my awesome nurse, Teresa, my other awesome nurse, and a new nurse lady that I haven't talked to before, all came over to chit chat about my adorable outfit, my plans for the night (which were pretty great), and their general advice on life... then Nora came carrying lunch and we entertained each other for the three hours I was there. It was a pretty uneventful day. My night was fabulous though. 

Next day I went back to get my neulasta shot. LAME. Hurt. Blah. 

Today I am good-- took my anti nausea meds, my tylenol, and my delicious corn flakes mixed with frosted flakes breakfast. I can't usually stand sweet stuff in the AM, but the chemo weekends really fuck with my taste buds to the point where my food can't be salty, sweet, or spicy enough! I can't taste it otherwise. And THAT is a very annoying way to live. So, I compromise a bit. I usually regain my taste sense around Monday or Tuesday. No other real side effects other than the typical minor bone pain and the "something in my throat" feeling (not too bad). 

Hair is still there, definitely still shedding and visibly thinned out to me. But mousse and volumizing shampoo is doing the trick until at least next week. I am ready to go back to Parlour with my cute little wigs and shave my head, but I am going to wait until the last possible minute. Anyone who knows me will tell you that I like to pursue things til the absolute, bitter, and undeniable end. What was that book, Shelley? The one that you loved and showed me with all the life advice, saying that sometimes you really have to push things to the explosive, crash into the wall, end in order to really get over them? That's how I feel most of the time. 

Hope you are all doing well. I am doing incredibly well. I am happy, sufficiently stressed enough at work not to be bored, but not overwhelmed, and looking forward to my favorite season which has already begun its descent onto DC... 

This week's special shout outs:

CARRIE PANZER! Nice note! Thank you!

NATASHA WILDER! Adorable post card! Thank you!!

All time hall of fame winner for a weekly, dependable note: JACKIE!!

And everyone else who loves me and has asked about me, thank you so much. Your support has made a huge difference! I get a PET scan at the end of October, and doc says the cancer should already be about 80 percent gone by then. I will let you know! Stay tuned. 

Anyway, it's time for my second breakfast before the day's adventures...

xoxoxo

Tiff

chemo update 4. no frills edition.

Chemo #4 update and other stuff...

Thursday went well, Saif sat with me and almost taught me how to play chess on his computer except... I don't really remember what to do. Something about rooks and knights and L shapes and checkmates but it's all a bit blurry now. I think he thinks I have the potential to play this game based on my cunning in other games of strategy... Then we listened to music and did a whole bunch of time wasting tv show chatting with my awesome nurse... and then it was time to go. I forgot to pick up my anti-nausea meds on the way out, and realized it after I was already home. Luckily, our hero Saif volunteered to pick me up at 8AM and take me back to the doctor when they opened, in order to get my white blood count shot and to pick up my meds in time to take them. 

This round's side effects are still kicking in, as per usual. Friday was mostly fine (I hung out with Allie, Sam, and Mama G!), and crashed a bit early. Saturday was great, I slept in and met Greg (with a surprise appearance by Wojo and a lovely meet and greet with my favorite boyfriend of a friend turned friend in his own right, Roman) for the movies. We saw Inglourious Basterds, the new Quentin Tarantino movie with Brad Pitt. Not bad. A bit bloody but definitely funny and crazy in parts... (true QT). I came home and crashed some more, and woke up around 11PM to go to The Raven for Mike's little bday get together. So nice to live down the street from a great dive bar... almost zero effort to show up and buy someone a Schlitz and sing along to Al Green... Promptly crashed out again around 2AM...

Now it's Sunday, traditionally the worst day and has been consistently crappy. I woke up to some beautiful weather and had the strength to waltz down to the 7-11 for the Times and the Post but by the time I had made my coffee and gotten to the Travel section I was dozing off. Today I have been feeling really weak and tired, unable to really move around without a concerted effort, and generally sick... just like the mini-flu (thanks to the white blood count shot). At times I think about how much better I would feel if I was just getting chemo and not this stupid Neulasta shot, but then I remember the stories I have heard about people getting neutropenia (their white blood counts go so low that they have no infection protection)... they end up in the hospital for days, they can't eat fruits and vegetables, etc. and that sounds absolutely terrible! I would rather feel like I have a hangover for two days every other week than to be in the hospital. So, I will suck it up. 

Other side effects, same as last time, a bit of indigestion in my throat (like something's stuck) and a numb mouth that makes food a bit... uninspiring. 

Hair update: it's still there, though it's definitely coming out. I don't really know how to explain it other than I started out with a lot. As grateful as I am for not having to wear a wig just yet, I am feeling a bit anxious about it and afraid that I have lost some of the bravery I was holding for the big head shaving experience. I worked myself up to this point where I was like, "whatever it's just hair, it will grow back" and recently, as I keep waking up to hair, I find myself secretly wishing it will never come out. This is against logic however, because it is definitely coming out (just slowly). 

For those keeping track, this was four of twelve infusions, so I am 1/3 done! It is hard to believe that this much time has passed, but I am also aware that the effects might be cumulative and that it will be getting a bit worse. My hope is that I can just get through it with minimal damage to my work and social lives. In an ideal world I would actually be able to make progress in those two areas, but I will settle for equilibrium and maintenance...

this post is probably only interesting to social workers...

Yesterday I listened to a short web training about interviewing traumatized clients... it started me on a big kick of continuing education... I have been a real life licensed social worker for a while now and it hasn't quite hit me yet that I am doing some real clinical case management! I have an MSW student coming in the Fall, so I am going to spend the next three to four weeks doing some intensive study into trauma theory, crisis intervention, and our preferred MOI 'solution-focused brief therapy'

for my grand social work overhaul of my program, i am going to re-institute eco-maps, process recordings, and all my favorite stuff from grad school! it's gonna be a party!

mmmm.... eco-maps.....

My family likes it the old-fashioned way, but here's a repost

Hi Family,

Well, I had chemo 3 of 12 last Thursday and it went OK, the side effects lasted a day or two longer than they did last time (BUT i had friends in town last weekend and might have pushed myself a little too hard). I am still feeling a little under the weather in a non-specific way, haha. My chest feels a little dry and wheezy and cold and I don't really know another way to describe that! I am not necessarily coughing a lot, nor am i necessarily out of breath, i am just ...conscious of my lungs like i haven't been before...

No pain though, except a really teeny headache that may be related to the outrageous heat/lack of caffeine/and stressful events at work. I am feeling quite tired when I wake up and go to bed... it takes me a while to get motivated but in general i have been okay at work once I get started. The Neulasta shot pain/soreness did come on Saturday and Sunday, but then was gone right on schedule with only one and a half days of tylenol this time. I heard that it does start to get better with each shot.

I have started to lose my hair as I noted in the last email, but it is mercifully hanging on (and it's weird because the longer it takes to fall out, the more anxious i am getting about it... like, effing just fall out already and be done with it!), but I am taking it as a little gift from the universe that i don't have to wear a wig during the first nasty heatwave of the summer here!! I hope it hangs on til next week!! I think the 12 or so years of dyeing my hair has done something to strengthen it... the other thing is my hair must be really thick, because it definitely falls out by the handful several times a day, and you can't really tell. (I can tell). I have to secretly admit that i am looking forward to having an all out dramatic shaving my head day. I sort of envision it like when Natalie Portman gets her head shaved in V for Vendetta... only of course I won't be in a secret fake prison...

my next chemo is august 20th. I thought you might be interested in my blog as well. I realize that i updated about chemo #3 on my blog and then posted the link on facebook but not all of you are on that! so here you go

Chemo Update #3

Hey all! 

Well, here is your third chemo update of twelve... but first a little pre-chemo recap...

Last weekend APL came to visit and we went to see some pretty awesome art at the National Gallery's East Building and the National Portrait Gallery, and we did the tourist thing which I hadn't done in years... 

He showed me the movie Atonement which absolutely shocked me and I loved it. 

Pictures from the galleries to come... 

I had an amazing weekend. 

Then Wednesday Jackie flew up from Florida to hang out with me for the weekend, and it's been great! We are getting excited about her wedding in March in Miami Beach (a beach wedding! cuban food, hot dancing, and I get to wear a fancy dress with no shoes, which come to think of it is pretty much how I end most nights that I wear a fancy dress....). Yay! 

---------

So, here's the dirt on chemo 3: I came in a little nervous because my red blood count was way low at the last blood draw, and they threatened me with yet another shot in addition to my white blood count shot if I didn't raise it. So, APL and I ate a fair amount of red meat, hahah, and I have been eating spinach whenever possible. And I have been spacing out my coffee and breakfast as I hear that caffeine reduces your body's ability to absorb iron...WELL... it WORKED!!! My count was way up and the nurse was really happy (no shot!... well, no extra shot!). So chemo went well, no issues. Took a bit longer than normal because I had the slower but thorough nurse (let's be real, it's not like i have plans on chemo days and I didn't mind at all), but afterwards Jax and I still had time to go to the post office and do some other small errands. 

Last night we just watched TV and vegged out and then sweet Noah who lives around the corner came over and hung out for a bit on the stoop (amazingly cool weather yesterday, i was in shock!)... and then he gave me a present of two framed beautiful photographs he had taken. Really, just gorgeous photos that were "cheer you up" photos and they worked! I am gonna bring them to my office so i can have something nice to think about and look at there (which those of you know what I do, know is important)

Today I have my white blood count shot at noon, and until then I am going to try to get some work done... This afternoon and evening I think I will do my best to keep Jax entertained and try to see some DC stuff...

Dani comes in the morning and then we go to CFA with Allie and Sam... then at night we are going to see Paper Heart with Farrah... Then Sunday we are going to have brunch with Wojo, perhaps squeeze in a museum, and then Dani and Jax leave for NYC. I wish I was coming with them!!! 

But alas, I have an insane day at work on Monday and I need to be on my top game...I am in charge of drafting up a comprehensive communications plan (e.g. target audiences, tactics, measurements, etc.) and I am more than a little nervous to get the feedback, but hoping it will be constructive so I can learn/improve. After all, that's what it's all about when you've been at your job for only seven months, right?!

Well, that's all for now, as I have to work on said plan!

I hope you're all doing well. 

Oh, and I wanted to give a special shout out to the following people even though I am about to send out thank you cards

Marie and Dave for the letter

Sophie and Rube for the letter

Al for the letter and coloring book page

Emily for the constant organic snacks

Janet and Jen for the vegan baked goods

Meghan McMillan for the awesome necklace

Allie for the Peopod card and watch

Jackie for coming to visit me and the .... well, the thing that's a secret but that I am so grateful for

Dani for coming to visit me!

APL for coming to visit me and for being sweet and for teaching me about modern art even though I didn't understand a significant portion of it...

Uncle Mike and Aunt Barri for the special package they sent me last week with Grammie's stuff

Saif, Farrah, Galen, and Josh for moral support, distracting and fun field trips, and just general fun and goofing off... :)

and of course, the universe. thank you, universe.

UPDATE Saturday: Somewhat rough day yesterday with fatigue and general yuckiness. Hoping today goes much better as it's quite packed with stuff to do! 

almost non-cancery update

Well, there's no reason this blog has to be all about cancer, right? Why not just keep you updated with regular stuff, too...believe it or not there's a whole lot of other stuff going on in my mind at any given time...

like this awesome surfing art film, for example, that I came across the other day. I like the photos and the music (includes bonnie prince billy! yay!), and it makes me want to be at the beach again (real bad!)

Tonight I am going out with Grace to see 500 Days of Summer and indulge her crush on JGL, and my girl-crush on Zooey Deschanel... should be a great distracting end to a weird day (I mean, really weird).

The side effects of the second chemo are coming and going, today's main event is unbelievably random fatigue (near narcolepsy, i am serious), and feeling like something is stuck in my throat (it's pretty annoying, and feels like swallowing a pill without water...except all the time). Good news is I haven't taken any tylenol in two days and the bone pain seems to be less than last round. 

Last night Saif and I went to Takoma Park (aka the People's Republic Of...) and had delicious vegan dinner at Mark's and ice cream across the street (though I got real ice cream coz it seemed just so much more delicious...). I told him next time he's in Brooklyn he should go to Penny Licks! They have really good vegan cookie dough ice cream that I tried when I was there last month. 

In other news, I am counting down the days til Dani and Jackie come visit me in DC in two weeks. FOR REAL! For my DC folks I can't wait to introduce you to two of my bestest friends! And also stay tuned for an email re: movies on the roof...

Love,

T

OKAY the return of the blog...and the cancer story

Unfortunately, recent events have given me cause to get back on this blog because I am exhausted with trying to update every one. I love you for asking, I really do! But it's hard to keep up with so many friends and family members (not complaining!!).

Here is the rundown:

In April 2009 I was having some pretty bad back pain that came and went and I assumed was a pinched nerve from sleeping funny. At the end of the month I went camping with my friends and jokingly mentioned this "weird bump" on my neck. My dear friend Saif suggested it might be an infection since it's my lymph node, and that I should go to the doc for a checkup. I did. The next week I had a referral to an ENT, Dr. Houtan Chaboki at GWU Medical Faculty Associates. He did a thorough job of going through all the possibilities (antibiotics, ultrasound, and finally, fine needle aspiration (that hurt!)). The initial results came in and "suggested Hodgkin's Lymphoma" so he referred me to Dr. Sedaghi, also an ENT there, but one who specialized in surgery like I would need to have an open biopsy (that is, to remove a whole lymph node for examination. Dr. Sedaghi called me on June 10th and said, yes, it is Hodgkin's Lymphoma and he referred me to Dr. Imad Tabbara at the GWU Cancer Center in the same building. The after-effects of the open biopsy were a scar on my clavicle area and a little bit of nerve damage right in that spot.

I met with Dr. Tabbara, who was very kind and patient, and he told me that the first thing to be done is to "stage" the disease and see how far it has spread. This includes a bone marrow biopsy, which was awful, don't let them tell you it isn't, hello! they are sticking a needle into your bone and digging stuff out. For real. The next thing they do is a PET/CT scan, which involves injecting you with a radioactive isotope and making you drink some nasty barium fluid in a room all by yourself for an hour, then lying still for 45 minutes or so in a tiny tube while they scan your body. I did both of these tests pretty much by myself, though Saif was waiting for me in the waiting room when i finished the pet/ct which was a huge relief.

Results from the tests came back on my 27th birthday, June 29th (some birthday present!!). The cancer was quite widespread throughout my chest and neck, and under my left arm, and surprisingly had metastasized to a spot on my T1 vertebrae. This spreading made my cancer Stage 4A (my only symptoms were the back pain from that tumor, no night sweats or fevers, which would have made it stage 4b). 4 because it had made its way to this other system (my bone). Luckily, somehow the bone marrow itself was clean so my chances were still pretty decent. The 10 year survival rate for my kind and stage of cancer is 80-85%. I will not lie and say I am happy with that, because there are times when I cry and wish that it could be somewhere closer to 99% --- this isn't some kind of infection, it's a cancer that apparently has magical spreading abilities and may have been growing for months and months. I also have these skin cancer scares going back years that still haunt me. I guess even though the survival number is still quite, quite high, to me it's not as reassuring as it might be to most people. Nevertheless I am staying quite positive because i know that makes a big difference!

So, with these results, the doctor said my treatment would be chemotherapy (ABVD- adriamycin, bleomycin, vinblastine, and dacarbazine) for six months. I go in every other week for the IV infusion of these drugs (plus some "premedications" which include anti nausea medication and a steroid to help my body take in the medicine). In order to save my veins, I opted to get a port implanted in my chest. This is a great little device that is surgically implanted at the hospital (under conscious sedation, meaning sleeping medicine, it was awesome- and Saif was also with me at the hospital for this procedure which calmed me down A LOT). It goes under your skin and there are two incisions, one small one and one bigger, gnarlier one. It took about two to three weeks for my scars to look tolerable and the bandages to be removed, but there really wasn't much pain, only a bit sore to the touch for a week or so. It was implanted on a tuesday and i had the first chemo infusion, without any complications, on that thursday. Oh, I forgot to mention the week before I had to have an EKG (normal) and a Pulmonary Function Test (where they make you inhale poisonous gases, for real!) which also came out "OK." and my blood was also "OK" though slightly anemic and i need to take a multivitamin.

The chemo infusion went well, everything as expected, and the nurses at the GW Cancer Center are amazing and kind. The facility is very, very comfortable and they have juice and crackers and magazines and laptops, etc. and you can also bring your own stuff (DVD players, food, etc.). They let you do whatever you feel like doing, and you can go to the bathroom as much as you want because the iv poles are portable and the bathroom is huge. haha. I just thought that was cool. I never feel like a super sick person. In fact, the second time around I wasn't even paying attention to what was going on with the iv's and the nurse coming around to put the next drug in... I was watching a documentary and eating a sandwich!

The day after each infusion I go in to get a shot called Neulasta. This drug prevents my white blood count from going down too far (which would delay my treatment), but unfortunately it causes some painful side effects, including flu-like soreness in my head, neck, and back. and BONE PAIN, like arthritis. The bone marrow expands with this shot, and that hurts. Who would have guessed? Thankfully, tylenol helps in this area. Regarding side effects from the chemo, yes, I feel quite tired usually two days after the infusion (so getting infusion on Thursday, I can work at least a half day on friday, and be home living quietly on Saturday and Sunday, then back to work on Monday). The nausea is almost completely controlled by a prescription called Emend which I take the two days after infusion, though my tummy and head feel slightly off-- my only point of reference is a mild hangover. My hair is coming out a little bit more after yesterday's second infusion (the doctor said to expect it around this time), and I already have a beautiful, natural looking wig that is ready to be fitted when it's time to buzz the hair.

So many of you have asked if there is anything you can do, and I thank you for that! For my DC friends, just trying to keep my life as normal as possible when I am having good days (e.g., hanging out, going to dinner/movies, events, etc.). And when I am having bad days, it means a lot for you to ask if you can bring me anything (even though i am so type A that i probably have prepared whatever I might need, hahah)... you never know when I might REALLY NEED a baked potato.

For my out of town friends who are within visiting distance, feel free to discuss visiting! I am so excited to have you, on good weekends we can do fun stuff, but if you come on a treatment weekend, we can watch movies and play games and try to go for a walk...

For my far away family and friends, just take comfort in knowing that I have made a great network of friends and colleagues here who have all stepped up to be my surrogate family. And everyone write me letters. You have no idea how much snail mail rocks my world. I cry every time i get mail because it's so special! 3165 18th Street NW Washington, DC 20010

The only thing I am scared about is that this treatment is a long-term thing. It is six months long at the very least, and if there is a relapse or any complications, could be longer. I want you to pace yourselves! I will need you just as much in November as I do now, so please don't overdo it now and burn out. I am really tough, and self-sufficient, so you don't need to bend over backwards now, and don't go into crisis mode unless I tell you to! LOL!! I promise to always be honest and tell you if you can help, and if you can't.

I am planning to keep this blog updated so people can follow along...


LOVE!!!
Tiffany

something pretty made with a camera, five dollars of yellow roses, and a sick day.

cello song

Today this lovely Nick Drake tune, "Cello Song," came on right as sun hit steel over the Potomac and I was staring out the window of the train. This is a song that allows motion to be felt, one that actually evokes wooden wheels turning and pressing into the earth, rolling by strange, exotic landscapes. I had a vision of the train thrusting forward at the dead end of the tracks, and just flying. I thought of it flying over the river and landing a centimeter above the marshy muckwater and sliding over it, gently sinking in bit by bit while still pushing ahead. I imagined the train's passengers: painted women and siamese twins and men on unicycles, all in black and white against a dusty indigo sky, climbing out of the windows and helping each other to the top of the train as it kept flying and sinking. One of the painted women grabbed the hub of a unicycle and wrapped her long yellow and turquoise fingers around the silver spokes as two men braced themselves against a steampipe and pulled her up to the top. All the passengers were sitting crossed-legged and leaning on each others' backs and someone was playing the cello and someone was tapping the top of the steel train to keep the rhythm and then suddenly the backdrop turned to a blood orange as the sun fell from the sky and black smoke from the crushed and drowned engine started to creep up and wrap itself seductively around the passengers who continued to play and sink. And life in their peripheral visions started turning into newspaper illustration and the trees on the river bank lost all their colors and leaves and turned to black sketches on gray paper and soon the ground followed and turned to coal, and the muckwater dried up and turned to ash, and the wooden wheels halted and froze, and suddenly the train itself was a hollow illustration and the passengers couldn't move as they saw each other's fingers, lips, and necks turning into black sketches on gray paper until the scene was still and the good Americans on the morning commute could see it in the paper.

Cello Song - Nick Drake

hydraulic fracturing is SCARY

You have to listen to this: http://www.wnyc.org/news/articles/104157


My favorite (sickest) part:
KAPPELL: How are you going to dispose of that water and how are you going to treat that water so you can properly dispose of it with out despoiling the water resources of New York State?
REPORTER: The US Department of Energy considers the waste water that is produced in gas drilling some of the most toxic of all industrial byproducts. Kappell is particularly concerned about the chemicals used – he doesn’t even know what they are.
KAPPELL: Nothing. They’re proprietary; they’re particular to the company. They don’t have to divulge it.
REPORTER: But in sworn testimony before congress last fall, environmental health analyst Dr. Theo Colburn – an opponent of drilling -- said she was able to obtain a list of one fracking formula to be used in Colorado drilling. She says there were 171 substances on the list, and that 92 percent had health effects ranging from sinus irritation to reproductive organ damage.

poverty and its discontents

This Sunday news broke that the Mayor and his Commission on Economic Opportunity (CEO), along with his Dir. of Poverty Research, Dr. Mark Levitan (formerly of CSSNY), were ready to release the new NYC poverty measure. Anyone interested in my personal opinion on this can email me.