Update, Schmupdate

Are y'all still out there? I know it seems like I have given up the blog in light of the chemo thing being over, but it's more like I am just trying to keep my head above water here at school.

Things are... GOOD.

So here is a fun post-chemo update. Yes! There are changes! My weird symptoms that I had gotten so used to are slowly fading away.
-Roaming, EXTREME itches that made me want to claw off sections of skin? GONE
-Constant runny nose? BETTER
-Intense and frequent leg cramps despite my daily banana? LESS FREQUENT
-Inability to balance on one foot due to lack of feeling in my feet?--IMPROVING
-Energy level? BOOSTED. My cardiovascular system has responded well to having more red blood cells and things like riding my bike up a hill or stairmaster are easier in the sense that my pulse doesn't beat as fast to supply oxygen to my cells. Or so I believe.

My stomach and skin are both a little unsure of how to handle my boosted immune system. The initial reaction was FREAK OUT, but I think they're getting used to the extra cells. In particular I think my skin had a hard time with the adjustment and for most of February I felt like I was 17 again. Now I'm just battling dryness.

So yes, it gets better. On Monday I'm going to see a normal doctor and hear their perspective. From an oncologist point of view (which is a little warped) I'm like super healthy, but I'd like to see someone who sees relatively healthy people.

School is crazy busy and I'm trying to be focused, but with perspective. Like, I'm here to learn and not to be the best at anything (FAIL on that count) so as long as I'm learning and I'm trying I should just be happy with that. Personally I'm working on keeping my ego in check whether I'm on the yoga mat or working on an econometrics problem set. It's important to remember that I do these things because they cause JOY and satisfaction and not because I think I am going to be the "best."

Speaking of JOY I saw the Alvin Ailey dance company last night and it was fantastic. Talk about joy. The human body is constantly amazing and beautiful and it was great to watch strong, gorgeous, graceful humans DANCE to music that makes your heart feel good.

I'll be back!

When you're in hell, just keep going

Dramatic, much? That's some advice my crazy pants ex boyfriend gave me in college. God love him, that was one of the wisest, most obnoxious things he ever said.

Tuesday I went back to Alta Bates for another stab (haha) at chemo. My nurse, Valarian ("he's Fillipino...they're really good at finding veins...") hit the vein on the first try with the big needle. Huzzah. We then waited for 2 hours for the pharmacy to mix 2mg of Vincristine. You win some, you lose some. Nurse V also seemed to have read the Vinc instructions and pushed it over the correct amount of time. AB: leaving on a high note.

I called Dr. K who said he was sorry that things were rough but that they missed me and would be happy to see me in Nov/Dec/Jan. Our compromise (darn you, Dr. K) is that I have to go back to weekly CBCs (argh!) and I will do them drop in style at Alta Bates. My nurse prac there will fax the CBC/Chem panel to Dr. K. Infusions will be done in Seattle.

The last two weeks were a little rough. School picked up which wasn't too overwhelming, but I faced another round of "adjustment" mental and physical style. The whole thing culminated in public tears on Wednesday morning where I felt sooooo sorry for myself. Here I am, at this amazing graduate program taking all these cool classes that aren't really that demanding and my life is soooo hard because I'm plagued by all sorts of existential questions like "what am I doing with my life?" And "why is that the right thing to do?" I wanted to call my mom because my adviser had been mean to me, but I was like, "Jessie, get a grip. You did not enjoy hearing about other people's problems when you were in treatment."

So. I smoked a cigarette, drank 20 oz of diet coke, and got Real. It's gonna be fine. And since that moment, it has been fine. And 5 years ago that would have been 3 cigarettes and like 44oz of diet coke... so that's an improvement? I'm here to learn and I'm learning. I've taken out loans and I'll pay them back. I like people in my program and they like me. I only have 3-4 chemo infusions left. If this week sucks, next week can be better. It's fine.

My plan for the week/end is to just get back into a healthy groove. Listen to the new Avett Bros album. Clean my room, yoga, make healthy food, drink in limited quantities, balance social activity with time alone, call people at home to say heyyyyy.

In the ingenious words of Micheal Franti,

The future's comin' on like a bomb
The whole worlds rockin' and the beat goes on
Ready or not we're bringing it on
The whole world's rockin' and the beat goes on

Firing your chemo team?

I don't know what to do.

I went to Alta Bates yesterday for my 5th to last Vincristine infusion. After 5 attempts they gave up on starting an IV and sent me home. I'll try again on Tuesday. However, I was there for over 2 hours. I did get a flu shot so it wasn't a complete loss.

The nurses seem convinced that my veins are just too small, and at this point all the good ones have been too fucked up by so many other attempts (and successes). Vincristine will really mess up a good vein--it's nasty stuff. However, this same nursing team also made a few strategic errors in which veins they poked and which IV needles they used. They were unsuccessful at drawing blood from the anacubital (the big veins in your elbow pit) so I'm not sure how much confidence I have in the general skill level.

The thing with really toxic chemo drugs is that you worry about them "leaking" into other tissue if the IV needle has punctured the vein in a few places. As a result, once you hit a vein high up (like in the elbow where they all meet) that arm is done for the day. Also, if you get in, but not good enough, it's too dangerous to infuse. Wrists and elbows, where veins tend to be more visible are too risky for chemo because if it were to leak the damage to the joint could be devastating to utility. This limits where you can get poked. I got poked in all possible places.

It's the little things: refusing to use a pediatric size needle even when I tell them my vein are too small for regular sized needles, the callous IV rip out from last time which resulted in the biggest IV bruise I've ever had, this month's blood draw failure... While everyone is nice, there seems to be a chaotic culture reigning in the treatment room and bad communication everywhere. As a systems observer, I am more appreciative now of how on it the Swedish team is. There is a huge qualitative difference based just on operating practices.

Anyway. I don't know what to do. Obviously try again on Tuesday... but everyone was making noise about having a port put in. I refuse. I am being a good sport about all of this: 2 years of incredibly conservative treatment, subjecting my body to heinous chemicals, but I am not going to have surgery to have PORT put back in my chest. No. 5 IVs.

I think it might be easiest to just start flying back to Seattle. Getting a new treatment team at Stanford or UCSF would be a pain. All the extra appointments... By the time I commute to either of those hospitals and go through all the introductory crap... I'm calling Dr. K on Monday.

Still here

Briefly:

#1) Tyra Banks on Gossip Girl. Glorious. Over acting, wigs, wig changes. Hilary Duff. Who knew. Lizzie McGuire infinitely more suited for Dan than Harriet the Spy.

#2) American Splendor. I realize the movie came out in 2003 but it was fabulous. Am now interested in reading Our Cancer Year by Harvey and Joyce...

This post is kind of epitomizing my life now. I could choose to blog about the things I'm learning which are really interesting and at times controversial (just like I could choose to be doing my homework instead of watching internet TV in my underwear and drinking coffee at 2pm). I could fill this blog with well crafted thoughts on healthcare, social services etc... But for some reason I'm not.

Anyway, I still get like 14 hits a day because people everywhere (all over the world!) are googling "sexy topics" and clicking on Inertia. My cancer has been mostly quiet lately. The weather is changing and my neuropathy is getting worse. I am ready to be done with treatment and resentful and bitchy about the fact that it isn't over. I miss Dr K, Swedish, my nurses, Chris and Michael, Billy and Yusef, and the guys in the parking garage who would propose to me. Friday is treatment #6 in the countdown.

My insurance company continues to pay, I continue to suppress my immune system, my hair is growing back, and it feels like all around me folks are getting bad news about Cancer. It's a weird place to be.

This last month I was at a yoga class where the theme was the harvest. This is fall. We are harvesting what we have reaped over the last year. A couple weeks ago was Yom Kippur and Rosh Ha Shannah--the turnover of the Jewish year. All of this stuff asks us to consider the year behind us and the year I'm reviewing was excellent--for me. It was full of positive momentum: feeling better almost every day, getting into Berkeley, having a wild 6 months of partying in Seattle, saying goodbye to my job and Community, and moving on to another situation full of Promise... It's like the happy montage at the end of the movie.

I'm trying to celebrate and acknowledge how wonderful this is and balance it with the tragedy that defines the year of other people. It's not just cancer, but unemployment, the failure of our legislature to actually look out for constituents, the hurtling of our culture into End Times... Anyway. I find myself using the same coping mechanism I discovered with in treatment: realizing that life is transitory, mysterious, ever changing, and still wonderful. Believing in transformation, challenging myself to be open to what can be good...

Once, in a yin yoga class, my teacher Janell gave me this meditation to help me focus on holding a pose for a long time while remaining present:
In Breath: This is the perfect moment
Out Breath: This is the only moment

Treatment in Berkeley: a Rant

I had my first chemo infusion at Alta Bates on Friday. It was terrible. The whole thing took over 3 hours which is absolutely fucking ridiculous when you consider that even if you push the Vincristine at the rate it should be pushed (1 mg/minute) the actual drug only takes 2 minutes to administer. Ironically, the nurse who pushed the Vnc just pushed it--in like 15 seconds.

So pretty much the litany of sins are as follows:
-treatment room is dark, has no natural light, and cramped
-IV was put in my wrist which is the most excruciating place to start an IV
-they didn't use litacaine (a Swedish practice) to numb the IV area
-despite my telling them that I can't use large, blue IV needles and that I really need the yellow, pediatric sized needle, they attempted my first vein with the blue. It fucking hurt and didn't work. I told you so.
-everyone kept asking me, the patient, what my treatment protocol was, if i had ever had chemo before (wtf?), what kind of cancer I had, if I had ever had Vincristine before, if I'd ever had an IV before, why I didn't have a port etc. and the thing is all of those answers are IN MY FUCKING CHART. Yes, I've fucking had Vincristine at least one a month for the last fucking year and a half. Yes, I have had an IV before and you should believe me when I tell you what veins are good. Yes, I've had chemo before. Oh My God.
-then the pharmacist came by and re-asked all those questions, and then asked for a list of the drugs I was on and what doses (again, in my chart right next to her) and instead of confirming she just wrote down what I told her and printed it out.
-then the nurse practitioner came by and looked at the print out (that I had dictated) and proceeded to write my rxs based on that--not my chart.
-she then told me that she wants to monitor my blood counts because she just doesn't know how I'll do on the Vincristine and I was like "you have my weekly blood counts from the last year in my chart... and I've been on the same drugs" and she literally was like, "I don't have time to read your chart."
-this WHOLE time I have a plastic tube in my wrist vein and it is SO UNCOMFORTABLE and they won't take it out because they like to "hydrate people." This is after I have had fucking 5 liters of water already to get my veins ready for the fucking IV. They did not listen to that either.
-when the nurse finally took the IV out, instead of removing all the tape and then carefully pulling the IV out, she just ripped. She ripped it all out at once. And it bled like fucking crazy and hurt a lot.
Conclusion: no one could be bothered to read my chart OR listen to me so I'm not really sure how any information got through to them. This is pretty simple stuff (my treatment at this point) but if I weren't totally on it, if I were say, a little old lady who was totally confused (see them all the time at cancer centers) what the hell would have happened? I'm all about being an empowered patient, but this was totally ridiculous.

Pictorial evidence:
12 down, 5 to go. We're in the homestretch!

Life so far

I have now been in Berkeley for almost an entire continuous week. It feels like 10 weeks.

Classes: are good! I don't have any previous experience in any of the areas we're studying (politics, econ, stats, law) but I feel (perhaps prematurely) that I can totally do this. So far it's even been enjoyable learning. And not working? Well that's just icing on the cake.

Home: is coming together. Here is my new room!

After 3 trips to IKEA, I finally have enough receptacle space for all my shit. Friday night I went into the Depths of Hell for hopefully the last time. I bought a desk, came home, assembled said desk, and then hung up all my paintings. Next I'm going to get to work on our common space. We need art on the walls, a toaster, a table, and... some character. Also if I get a particular cord we can hook up the TV to the DVD player and actually watch movies.

Social life: I'm so freakin tired. On Saturday night I braved a party with my classmates and was very happy that I did. Making conversation between classes has been difficult for me, but put in me in a situation when I have a beer in my hand and can swear a lot? Perfect. Much like classes, I'm getting the feeling that I can do this. I can make new friends. I can build another community. Other than that, I'm just trying to keep yoga-ing (I keep having dreams where I can finally get my foot behind my head... so close!), do all of my homework, and of course spend inordinate amounts of time on Facebook. Breaking out beyond these activities requires my super powers, but hopefully as things settle down I will be able to return phone calls. But yeah, I miss all of you.

Cancer: things are ok. I have a new oncologist down here and my first appointment was fairly disappointing. I think it was a combination of 3 things:
1) No one will ever be Dr. K and the Swedish staff. They were totally amazing, we went through a lot together and they saw me all the way through--no new doctor coming in at the 11th hour is going to be able to beat that.
2) He really isn't as cool or lovable as Dr. K. Even objectively. And he didn't seem to give a shit. I'm a maintenance patient. I have no problems. It's not thrilling to see me looking healthier and healthier every week because he wasn't there when I was really sick. And also, I think he might kind of an ass hole.
3) Whenever I see a new specialist, I have to re examine the ALL diagnosis, the treatment plan, and my own agency in it all. Dr K, for reasons I completely understand, left no gray area when it came to treatment or diagnosis. He was like "this is it, this is what we're doing" and it was kind of nice because as the patient you are actually the person saying, "yes, you may put this poison in my body and I authorize it" and technically you have the power to deny any part of your treatment. And so you have to trust that your doctor knows what's up because you have no idea. I hate it when other oncologists then look at my treatment and say "well I would have done this differently" because look, dude, I just spent a year in hell because I thought it was the only way through so please for the love of God do NOT undermine my shakey confidence in what I am doing. Anyway, my new onc was just like "oh I don't do it this way..."
However, one of the things he doesn't want to do is see me every week for a blood draw! So hopefully I can just move to going in every 4 weeks for my Vincristine.

So that's the short of it. It's going to be ok.

Ground Control

Every four weeks I take this drug called Vincristine. I get it through an IV. In November, getting my IV started took 5 attempts and on number 6, we went for the big vein in my elbow pit—and you’re not supposed to take chemo in your joints just in case there’s a leak. Even the guy who used to work with drug addicts couldn’t find a line in. This month, the amazing Nurse Lo got it on try NUMBER ONE. She is the first person to hit on a line on the first try since I started chemo in February. She rocks. It was an awesome way to start chemo in 2009.

Vincristine’s listed side effects are: neuropathy, hypoatraemia, hair loss, and constipation. However, other than the neuropathy, the two side effects that I notice are a runny nose and sensitive skin. My nose has been dripping for the last 11 months. And if I don’t take my allergy meds every other day or so I am plagued by extreme itchiness. Cold, numb toes, itchy skin, and a runny nose are totally tolerable, but they are also REALLY annoying. Having experienced a lot of constipation and hair loss, already… well, it’s not that bad I guess.

I spent my ENTIRE day in bed. Really. I lay in bed and watched instant netflixed Heroes episodes. At 5:30 I decided that I needed to eat something, take a shower and walk around. This is me bonking out on life after an 8 day trip to Oregon. Living is exhausting.

When I was home over the break people kept asking how I was (duh) and I kept trying to explain it… I’m fine. I can do everything. And I am living my life. But I’m also living right here on the edge. It doesn’t take much to push me over the side. A bad night’s sleep, a work fuck up, a nasty fight, a 9 hour drive… I’m a wreck. I will cry if you look at me funny. I hate this. I’ve always been a very emotional person—I feel things in a big way. But I’ve spent most of my life trying to control those feelings so I didn’t like an emotional wreck. I am now an emotional wreck at least 10% of the time. I do not like it one bit.

I wish I could show you how damn cute my hair looks. Obviously, the Photobooth shots offer some idea, but it’s adorable. It has a little curl to it… and these cowlicks. It’s finally long enough to part! And I just look like a normal girl. It’s not even an ambiguous cancer look. While I have a feeling more awkward grow-out moments are coming, I will take DPEH’s comment that I look “totally, Seattle, urban, intellectual lesbian” as the compliment that he meant it.

Marry me, Ryan Adams

I have a dad who can give me non-condescending advice about car maintenance. It’s pretty great.

Last night I watched Singles. I cannot believe I had never seen this movie. It’s set in Seattle in the early 90s and it’s Cameron Crow and it’s mid-20s angst and Matt Dillion with long hair and people (both women and men) wear tights/leggings with shorts in almost every scene. What a great fucking movie! There is absolutely nothing deep about it and there are no great lines in it like, “I just really thought I’d be something by the age of 23…” But did I mention that Matt Dillion has long hair and wears shorts and leggings? Because that is worth netflixing, friends.

How am I? Oh, the neuropathy is getting worse again, but I hadn’t been taking my Glutamine so hopefully that will improve. And I’m tired. Really freaking tired. I way overbooked November. If I can just get through the next 4 weeks and stop trying to do 100 million things I should be fine.

My body is changing again. Whenever I say I’m gaining weight people tend to be like, “good!” even though I was slightly overweight before chemo. Chemo brought me back to what had been a healthy weight at previous times in my life. However, it destroyed a lot of my muscle tone in the process. With yoga I was able to get some amount of control over my limbs back, but I couldn’t really gain strength like I used to. It was weird.

Suddenly, I find myself gaining weight rapidly despite exercise and calorie counting. I don’t know if I’m digesting better or if my body just misses being bigger, but my legs are bulking up again. Mostly this IS good. I think the majority of it is muscle. It’s just hard because I don’t feel like I have a lot of control over my body. Throughout all of this I’ve been eating as healthfully as possible and exercising as much as I could, but the results are so different…

Well, I’m off to my next brilliant netflix find: Tales of the City PBS miniseries.

Git 'er done

Yesterday I spent an hour with my therapist trying to talk about the process of merging back into Life without using sports metaphors. It was harder than you would think.

The Hick is gone, my hair is growing back, the scariest chemo is over. Yay! But I’m still really really tired. Pulling the Hick did NOT magically restore my body to what it was 10 months ago.

My body is tired, but what I don’t think I was expecting is that my brain is tired too. It’s kind of discouraging. One of the reasons I’ve been able to be so effective at my job and cover a position and half over the last two years is that I have the ability to focus and work very quickly and efficiently. Much like if I were to try to go for a run these days, I would fall back to my old 9:30 pace, when I work I immediately jump into my old 1.5 FTE in 32 hours/week and after a few hours I am so wiped out. I work a lot faster than I run, btw. So anyway, I’m trying to figure out how to get everything done with my decreased endurance levels.

Here’s something I haven’t mentioned. Lately, I dream about my hair almost every night. It’s weird. I listened to a This American Life about people who have been blinded or lost limbs and for years and years afterward in their dreams they could still see and walk. I dream that I have hair, but I also KNOW I’m not supposed to. In my dreams, I will incredulously touch my hair or look at it in the mirror it will disappear as my sub conscious remembers that I don’t actually have hair.

I was playing with my long-hair wig the other night and I finally got it to look like my hair used to. I put it on and walked around my room looking at myself from various angles. On one hand I think I have gotten so used to myself bald that seeing myself with hair is shocking. On the other hand, when I saw myself with like, my hair I looked so much like I used (but skinnier) that it was heart wrenching. I accept that this is how I look now, and I even like it, but then I remember… I miss my hair. A lot. Still.

It can only get better!

Well, it’s over. Sort of. In terms of how they name my cycles and the severity of drug side effects, the worst of my chemo is OVER. And these last few days (as I’ve been rallying myself constantly) are the low point physiologically EVER.

Here is what my stomach looks like after 8 Cytarabine shots. You can tell how many platelets I have on a given day based on how big the bruise is. The tiny bruise is about 120 platelets, the medium is 89, and the huge ugly one is 10. The rest of look like little pin pricks because I was over 200.

I am starting to feel better. The blood yesterday was great. I worry about my white count a lot and my body seems to be running what I have started calling “mock fevers.” It will start with chills and body aches, followed by a spike where the soles of my feet and palms burn, and then the break when I start to sweat profusely. Yet through all of this, my temperature remains under 99 degrees. Today my face and head have been burning up all day. If you were to feel my forehead, you might say “Holy Smokes! You’re hot!” You would be right on so many levels. I look kind of feverish, but I’m 98 degrees.


So it’s obvious by now what a lying, hypocritical, asshole Sarah Palin is. I hate politics. I hate that there are so many logical and ethical things to nail her with and people still default to misogyny. I hate that I’ve gotten two emails already authored by democratic men, urging me to be a good feminist and do something anti-Palin. Like, “if you’re really a feminist, you’ll realize what a terrible person Sarah Palin is and do what I and all these entitled, white, ‘progressive’ men tell you to do.” Not that men aren’t allowed to be part of the feminism discourse or that many men aren’t better feminists than Sarah Palin, but the whole paradigm is so disgustingly masculine (in the bad way,) paternalistic and condescending I could barf. And I’ve been barfing a lot lately.

Punky

Getting up this morning at 7am and going to work--a service project with 25 high school students--was physically one of the most challenging things I have ever done. To channel an old rugby phrase, I woke up feeling like "total butthole." The longer I was awake, the easier things got, but man I was totally beat and just taking a wheelbarrow up a steep hill (empty) left me heaving and wanting to pass out.

After the work project I headed for the chemo center and CBC revealed that going to work and playing around tools all day was one of the stupider things I have done since diagnosis. Platelets 20, WBC 1.2, Crit 23.

Tomorrow I am getting my last Cytarabine shot EVER, another blood transfusion and a G-shot. Maybe some platelets. So yeah, I feel pretty punky and more than a little nervous about my counts. My nadir is supposed to be Tues-Wed, but if I get Nupagen tomorrow, I might avoid it all together. I think this is low enough for my comfort. Why is this last push so crappy? Why is the Universe trying to rain on my parade? Tomorrow is my LAST INTENSIVE CHEMO TREATMENT!!! Why can't I enjoy it?

The karmic finger

Yesterday I was running around all elated, sending emails that said stuff like, “today I begin the last of my ‘intensive’ chemo ever!” I was just Pollyanna to the max and then the Universe was like, “here’s the finger, Jessie.”

My appointment with Dr. K was at 3:20, followed by 4:00 chemo. I saw the doc at 4:15 and did not get my chemo until 5:45. I was a little flipped out at that point because why was everyone trying to ruin my fabulous day and make it so I couldn’t go to fucking yoga! But the point of yoga is to not get flipped out about these things so I was like... OK, deep breaths, chill out. Came home, ate Rachel’s delicious bread pudding and fennel-kalmata olive salad, took a Klonopin and tried on outfits for Sarah’s wedding. Eventually I took an Ambien (as you know, faithful readers) and face planted.

At 10:30 my body woke me from the Klono-Amb stupor to BARF. Oh man, I could not stop barfing, retching, DRY HEAVING for like an hour and half. The homecare nurses told me I had to call Dr. K who takes all his calls… woke him up at like midnight and he told me I had to go to the emergency room. The ER was blessedly quiet and they were happy to see someone who was “really sick” and not just trying to scam pain killers. They gave me a room immediately, started fluids and eventually pumped me up with IV Zofran since I was incapable of keeping the pills down. At 4:30 I got to go home.

Today is better. My chemo only took 30 minutes which is like a freakin record, I was able to do all my errands in the 2 block radius of the treatment center and I feel SO MUCH BETTER. I had planned on taking today mostly off for Sarah’s wedding but in light of falling counts, an unreliable stomach, and an event with 40 kids tomorrow I think I’m going to chill at home for the day and watch Netflix and sleep. I think maybe the Universe tried to apologize too because I had all green lights on my drive to Swedish and no lines at the pharmacy, bookstore, or bank.

And by the way, I really do have a much more sophisticated understanding of karma than you might elicit from this post… I mean, I was a freakin religion major.

Crash, burn, get up

Ah, the fog has cleared. Every few months I have a Crash and Burn few days where I just totally, totally “bonk out” as they say in endurance sports. Last week was kind of a lot—the 4 mile run, yoga, work, Cytoxan, the party, the Portland visitors… and I bonked out. But the good news is I am much better at dealing with bonking than I was the first few times. Here are the lessons I’ve learned:
-continue to eat and drink water even though you feel like crap
-freakin take your Zofran before the nausea gets really bad
-it’s OK to sleep…
-as long as you are sleeping and not just lying in bed, lacking the motivation to get up

Once I reach the lying in bed with no motivation to get up, then it’s time to get up, force feed, and go to work and attempt to engage in life. That was today.

To give you a run down, I went to the party on Friday night where I must now digress and share the uninteresting update: party not that awkward. There were a ton of people there, including a lot of people that I am friends with so while I had many normal and pleasant interactions with the young man in question (including a moment I know he was checking out my ass in my jeans—and it looks good) there was no awkwardness. Well done, Jessie! As for the evening’s entertainment, my friend Elisa is a sex educator for Planned Parenthood and my new friend Nathan seemed to know a lot about sex and so most of us listened raptly to advice about... stuff. Let's just say I learned a lot.

Anyhoo, the Weeks and Verhoeven contingent made it down around 10, we met up with Birch and I did not go to bed until TWO IN THE MORNING. I know, it was so crazy. Saturday was a whirlwind of tourist-like activities and then just like that it was over. As soon as my friends left I got in bed and didn’t get out until yesterday afternoon when I realized I was hosting dinner club for 10 people. Luckily my mom was lurking in North Seattle, waiting to be useful and together we made BOMB polenta, red sauce, and used Virg’s awesome pesto to put together the perfect late-summer dinner.

Here is my red sauce recipe:
Sautee onions, peppers, garlic, summer squash
Add a bottle of beer (I used Pacifico)
Reduce
Add a goodly amount of fresh diced tomatoes
Salt, sugar, fresh basil to taste

Mmmmmm.

Today I made myself get up and go to work and tonight I went to yoga for the first time since Thursday. I was definitely a little stiff, but more than ready to hit it. Tomorrow I get to go to Eiric’s Wednesday morning class which I love but I think I’m going to have to start limiting my 9:30-11 yoga classes to about one a week if I’m going to start working “full time.”

I was just saying to my therapist that I was getting used to my cancer lifestyle—only working part time, doing lots of yoga, spending the rest of my time with the onc nurses at Swedish… Bah—Real Life, you loom large!

Here is Ben doing plow:

"Fun Run"

Today Krista, Julian and Lissa ran a half marathon for Muscular Dystrophy. I said I would go and cheer as they crossed the finish line. Then I said I would drive with them in case they wanted to get drunk afterward and needed a DD. Then I realized that I would have to wait around for 2+ hours waiting for them. So I signed up for the 4 mile "Fun Run/Walk" figuring that I could definitely walk 4 miles. Well guess what? I CAN RUN 4 MILES. Heck yeah. I ran all 4 miles. Or jogged all 4 miles. I was so proud of my body! Fuck you, chemo meds! Rock on, blood cells.


Julian, rocking the official Team NoBea headband. You can't see it, but this homemade headband says "Team NoBea."

Breakfast of champions. Champions battle neuropathy with Glutamine.

Team NoBea: Me, Krista, Lissa, Julian. I did 4 miles in about 50 minutes, they did 13.1 miles in 2 hours 10 minutes! They credit me with pacing them the first mile and half. Haha. But let's pretend. If you ever want an 11 minute mile pacer, I naturally run an 11 minute mile...

Because I obviously have to post

I have several potential blogging topics:
-How much I don't want to take Cyclophosphomide on Thursday and and my reservations about my treatment protocol/discussion of whether or not I even have ALL, etc.
-My growing connection to the NoBea neighborhood via my yoga studio. My growing connection to Seattle and community here
-The merits of John McCain's choice of Sarah Palin as running mate and how the Republican strategists seem a lot more together then the Dems
-Review of Murderball which I finally saw last night and loved. Segue into how much I miss playing rugby and my teammates

But I'm not feeling very bloggy. I'm feeling kind of tired. The blood transfusion rocked my world (energy! yes!) and I kicked ass in both my yoga classes so far this weekend. But now all I really want to do is watch the US Open, read, and eat. We're having a dinner party right tonight (cooked almost exclusively by Rachel--I contributed my 3-day old tabouli which is still pretty tasty) and I'm hiding in my room drinking diet coke. Last night Julian had a party and I came downstairs and stayed long enough to gorge myself on guacamole and say hi to his friend Sarah who I really like and then I retired for the evening--Murderball in bed. Perfection.

The beat goes on

My white count this morning was 4.1—that’s a fully functional immune system! The likelihood of me ending up in the Onc ward this week is very small. My crit (reds) are a little low and I will say that is the reason I only biked up half of Beacon Hill before getting off and walking. Low hematocrit and Adriomyacin. I heard a rumor I won’t bother to research that Lance wouldn’t take Adrio because it diminishes your lung capacity. Right. I bet Maarten took the Adrio like man.

Also, I forgot to mention in all my despair of steroid withdrawal that I got to see Jenny and Richard last weekend and it was sooooooooooo great. They brought philosophical discussion back to the NoBe Mansion. After they left Julian, Beth, my mom, and I debated the merits of organized religion as a political force. Jenny and Richard, come back and enrich our intellectual lives! No one will let me wax on at such length as Richard! No one!!!!

made it through to the other side

Whew. I woke up this morning feeling... normal. Well, Jessie-normal. I did 90 minutes of yoga and rewarded myself later in the afternoon with rice pudding from the Carniceria downstairs. It's really good rice pudding. I further rewarded myself by buying Half Baked for tonight's dinner club which is only me and CL.

Work was good today. It was kind of fun and busy and productive and I stayed later than everyone else for the first time in months. Of course I came in at noon, but it was almost an honest day!

What else can I tell you? I have raging acid reflux right now, but I just drank a glass of milk with 10 g of L-Glutamine in it. Today I begin my L-Glutamine regimen which should help with my returning neuropathy. Damn you Vincristine! Anyway, I had been taking it in pill form from the natural food store--100 g cost $14 and I had to take about 10 pills a day to get it all down. The powder was 1000 grams for $40 and it makes me feel like a buff weight lifter taking a supplament. As the jar informs me, I can just add this "tasteless" powder to my meal replacement/protein shake! Perfect!

whatever

When Dr K suggested I taper off my steroids because I might crash, I was emphatic that I just was going to STOP taking them. That was stupid because now I'm experiencing withdrawal.

I feel like total, total crap. I'd elaborate, but that's sort of it. Crap.

The last day of steroids

Well, I can't think of a better way to start my last day of Decadron then with a 4:30 am post. I feel ok. Not too crazy right now. Not like last night when I came home at 8:30 to witness a double dinner party (after myself and the house cleaners had spent the afternoon meticulously cleaning the kitchen) and was like "If this isn't clean tomorrow morning I'm going to have a nervous break down." Then I took some Klonopin, ate some food, and chilled. I really love my roommates and they took my baby freak-out gracefully and just pacified me with portobellow mushrooms. Mmm. Roommate love.

Things. Things are ok. Today is my last cocktail of the stomach killer: pred, adrio, vincristine and while I'm grateful to hopefully go back to regular bowel movements and a peaceful esphogus, step 2 (we can talk about it now) is scary. My next drug is Clyclophosphomide. Its two main side effects are Lymphoma and Infertility. Talking about poop is one thing. Getting graphic with my friends and roommates about all the correctal, Maalox, stool softner, etc I'm on often leads to funny conversations. And even while it's painful, it's... OK. Pubic hair falling out? Funny!

Lymphoma and Infertility are significantly less funny. And they aren't immediate. And I can't control them with more OTC drugs or Zofran. And who the hell knows. And yeah I'm in a very low risk threshold. So enough about that.

Today is Bekah's PetScan. I don't talk a lot about my other cancer-buddies out of respect for their privacy, but today is important and Bekah is one of the most significant connections I've made since diagnosis. If you love cancer blogs (and who doesn't?) and brilliant, sassy, thoughtful, generous, and attractive young women with cancer (obviously, you do!) check out Bekah and send her whatever you send me. It seems to work--my generous community!

Last night (speaking of great young ladies with cancer) was my LLS group. It turns over a lot--cancer being such a transitory disease, but this was perhaps the most successful group I've been at. There were 4 of us--all currently undergoing treatment. All young women between 22-30 and able to talk to each other. It's always nice to go to LLS and talk about cancer with people who REALLY get it, but for some reason last night was just easier and more fun. I was really impressed with the other women and the insight their stories provided. And now being 8 months into treatment I'm starting to feel like a wise old cancer lady. Very positive.

Cancer and The Bus. I ride the bus to Pike Place Market to see my therapist on Tuesdays. In the polite world, most folks never stare at my Hickman and only take side glances at my short hair. This is not true on the bus. I am guaranteed every ride to engage in a conversation with a COMLETE stranger about my health status. I like it. It feels so honest. And I love to talk about myself. And so far everyone I've encountered has sent me away with genuine well wishes-- random acts of kindness. On Tuesday night the two random women standing next to me (who didn't know each other) were both survivors and for 10 minutes we just made awkward conversation about cancer. But I liked it. There are places other than Swedish where I'm not a freak. I'm not a freak on the bus.

Manic Roid Machine

I just woke up with that blog post title on the tip of my tongue. Manic. Roid. Machine. Sweet.

Here is the good news: I only have three (3!) days of decadron left! And while I feel completely insane about 30% of the time, hyper is slightly better than depressed. Hyper. Really hyper. And then hyper CRASH! BANG! And I just drank an entire bottle of Maalox in 24 hours.

Last night I made dinner for fourteen (14!) people! It was dinner club, plus my fam, the roommates, and some Corvallis kids. Here is the delicious menu:

Black bean burgers from scratch!
Black beans mashed (with a few whole ones for appearance)
Walla wallla onions, peppers, zucchini sauteed
garlic, lime, salt, cumen, whatev
bread crumbs (gluten free!)
with a little egg to hold it together
**I broiled the burgers (both sides) on a lightly greased pan (they held together very well) and served with avocado, tomato, onion, pepper jack, and condiments on sourdough English muffins. Or tapico hamburger buns (for those of you who can't do the gluten.)

MMMMMMMMMMM

Gluten-free tabouli!
quinoa
chives
tomatoes (seeded)
cucumbers (seeded)
chopped mint
chopped parsley
garlic
olive oil
lemon
salt

Desert was the approx 4 lbs of blueberries I picked on Sunday afternoon mixed with fresh peaches, lime, and honey. We served it over vanilla ice cream and CL made the most decadent blueberry cobbler. I love food. I love community. I love Klonopin my new anti anxiety med that made it possible to lie down and stay lying down all night (even if I didn't exactly sleep) after my guests left and I had manically cleaned the kitchen (with help) several times. This isn't nearly as bad as last time's bought with steroids and it's almost, almost over!

Thursday is my last cocktail of Adriomyicin, Vincristine, and Decadron. After that I get a rest before the Cyclo and Ara-C. My plan for this weekend is to do lots of yoga and just crash hard off the steroids. I hope I cry and sleep, and read a lot of books and drink a ton of water. If you want to come over and watch sad movies, I think that might be just what the doctor ordered.

But I'm getting ahead of myself. I still have 3 nutso days left and on those days I have lots of fun things planned like going to yoga with my sister in a few hours, seeing my young adult cancer group, hanging out with high school students and writing the first complete draft of my fall programming schedule. Boo yah, baby!

Roid on!