Sunday, August 31, 2008
-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.
Friday, August 29, 2008
Again, blood donors of the world: I thank you.
I have no plans for this 3-day weekend beyond doing yoga, watching TV, and shopping for skirts and t shirts at American Apparel. On Monday we have a Quest reunion with Danina and Lynn and dinner club. Awesome!
Oh, and Sarah Palin? Perhaps I will write a brilliant blog about my thoughts on the DNC and those speeches while I'm getting stranger-blood dumped in my body. O e t t i n g e r, out.
Wednesday, August 27, 2008
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
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
Tuesday, August 26, 2008
This is my new hero:
Maarten van der Weijden (he even has a cool name). He just won a gold medal for distance swimming and he had ALL seven years ago AND a bone marrow transplant. Thanks, Duane for the link!
New life plan: learn Dutch, move to the Netherlands (where they have good health care and attractive people), marry Maarten and be happy forever. Swimmers are hot.
Monday, August 25, 2008
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!
Sunday, August 24, 2008
I feel like total, total crap. I'd elaborate, but that's sort of it. Crap.
Friday, August 22, 2008
Thursday, August 21, 2008
Class was great. I felt good energy to just push hard and got a great sweat in. Afterwards I talked to my really rad teacher a lot about cancer and she told me that I was inspiring. Compliments, compliments, compliments. Then I rode my bike to work and worked, worked, worked. Then I kind of crashed. I stopped feeling like Lance Armstrong/Wolverine and started feeling like the world was crashing down around my shoulders. Shit. You know what Lance Armstrong and Wolverine will never have to deal with? Getting their period. Yes, it's here again. Hallelujah, but steroids and hormones together? Jesus, if it weren't for all my freakin meditating I probably would have had a complete melt down already. As it were, I'm just giving myself a break here, drinking some coffee and I called my mom and she's going to drive me to chemo as opposed to my original plan which involved biking to chemo... Some day!
Some days I just feel so good. I talk about this with my therapist and we talk about it a lot in yoga--not expecting things to be the same every day. Not letting yourself think something is going to be hard or bad just because it once was. I talk a lot about being ready for anything to happen, but when I say that I mean I wake a lot of mornings expecting to feel wonderful despite all the shitty things going on inside my body. So while my uterus does jumping jacks and my colon takes its sweet, sweet time moving anything out of my body, today is my last day of Decadron and JENNY AND RICHARD ARE COMING TO VISIT. Maybe I'll put off my weekend of despair for a bit to eat lots of unhealthy veggie food with them.
Tonight I get pho!
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.
Tuesday, August 19, 2008
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.)
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!
Friday, August 15, 2008
So apparently my mom (despite continued check ins this week) put out the call that I wasn't feel so well when she posted her Jessie-update. I still haven't addressed this with her or her mass emails, but it seems we now need finally have the boundaries talk. What is, and is not stuff I want her to share with her email list. Here is the email that I sent out yesterday that reflects how I actually feel:
Warning: long, rambling email about cancer, general state of mental health, lots waxing philosophical, unforgivable bastardazations of Eastern Meditation practices, some irony, and wholy OK to skip through. But a progress update seemed necessary for many in my fan club. I won't be bashful, I have a fan club.
So here we are: the final 10ish weeks of intense chemo. It's kind of scary if I think about it too hard. Every morning I wake up wondering what my blood counts look like. Do I have an immune system today? Those blueberries I just ate—I forgot to wash them! I hope they don't have killer fungus! Etc, etc. But I've also gotten used to this cancer-life and really, I don't think it's that different than life in general. We never know what our day will bring—I'm just more… ready for the infinite possibilities?
Status: doing good! My GI track is losing cells which means I have to remember my antacids and not do things like eat spicy food and drink 10 cups of coffee a day if I want to be happy. I'm ok with that. Last night I made egg drop soup for the first time. Mmmm.
Despite an emotionally rocky July (this cancer business is taking WAY too long and I was getting a little burned out), lately I've been feeling extremely peaceful again. I feel lucky for so many things everyday: my job, my health insurance, my body's enthusiastic response to killing cancer cells, the practice of yoga and meditation, but mostly my wonderful, supportive, family, friends and community. I have heard so many people iterate that cancer cost them friends—that they learned who was really there for them. What I've learned is that EVERY one is still here from me: that my community and the love people have for me is stronger than I ever knew. And in this process I've also made friends: both cancer-related and non. I actually have MORE friends now I think… Weird. So thank you so much to all of you for your loving thoughts and words. Again, it's woo-ey shit, but I feel all the vibes you send me.
Right now my life is taking every day as it comes. It's mellow. I go to yoga, I go to work, I clean my house (massive doses of steroids again), I cook with my friends, I walk around Seward Park, and I hang out with high school students who make me laugh really hard and like to touch my Hickman line and hear about all the crazy, legal drugs I get to take. Fall should be exciting for me professionally—more turn over and rearranging has left me in a great position at work—autonomous, respected, in control of my own programming but great opportunities to collaborate! Yes!
I think of myself as building a bridge right now--a bridge back to normal life (having cancer, my use of cheesy metaphors is immediately taken without irony-relief!). Physically, my body has changed, and I'm learning where she's become so strong and the other places I've lost her. Mentally and emotionally, I'm still grasping all the issues I put on hold last January--namely: who am in the face my own life? With disposable income, a wide career track, burgeoning communities in several locales, food and clothing affectionada: how do resolve and distill what I really love above teh general hum? How do I make my life meaningful and in service of others? This was a journey I started in earnest about a year and, just above this last set of chemo-stream crossings, I see the path is back and it inevitability will look very different. Deep, huh?
I want you to know, that I have really come to accept the reality of cancer in my life: the drugs, the possible long-term effects, the sitting and waiting, the patience, the vulnerability, and at time deep exhaustion. And while I do try to save some of my emotions for healthy things like anger and sadness, I've mostly found that acceptance makes daily life do-able AND pleasurable. I'm still breathing and functioning every day and even though my emotions are often close to the surface, I kind of like the rawness and with which I get to experience things. But the over arching thought I really feel is peace. It's easy for me. No one thinks this is terminal and we (my onc team) feel like we're going to the end of something entirely curable. This process will leave scars, but maybe not the kind people associate with a cancer battle. And that's where I am.
My hair is also growing back (even though it will probably fall out again next week) and I'm including a picture of my re-grown eye brows. Following this period of intense chemo, I'll be on a maintenance protocol until 2010. I may or may not be able to grow my hair back, so I relish these last few weeks with my eye lashes. However, who knew I looked so good without hair? Other things that pertain to the future are that I will be in Corvallis in late-September for my friends' Clint and Ashleigh's wedding. I am so excited by the possibility of seeing so many of you! I promise not to drink too much at the wedding on Saturday night so I can go to church on Sunday morning, the 21st! Also, watch out for a big bash in late October when they pull my Hickman line. I haven't gotten very far, but there's going to be party and nothing about this party will involve Denial. The party will be about moving forward, purging the house of chemo deamons, and hopefully me figuring out a way to honor all the wonderful people who have supported me ceaselessly in this process. Oooh, I get excited just thinking about!
Here is something my yoga teacher shared with me the other day that I find particularly inspiring: Every day we're all looking for truth, beauty, and immortality, and really, it's everywhere…
Lots and love,
Wednesday, August 13, 2008
So far, so good. I woke this morning with a peaceful belly and went to yoga. What it comes down to (I’ve decided) is that if I wake up and I feel good, I should go to yoga because I don’t know if I’m going to feel good again at when the next feasible class is. My therapist and I talked about this and apparently, that’s very healthy behavior (for someone who has such a flexible job).
Last night I had some prednisone mania—I cleaned out the refrigerator, went grocery shopping, and did a bunch of dishes. It’s such a weird feeling to hear your body scream at you, “Jessie! Slow down! I’m tired! Let’s watch TV” and my brain is like, “Um, we still have organize the Tupperware, and do you think the couch would look better against that wall? and I wonder what the weather will be like in Cabo in January? should I go to that yoga retreat in
Class was good. We talked about not letting the past and memories become a reality or something so fixed in our minds. Every thing is transitory and has the possibility for newness every second. When you’re trying to be optimistic about your last 10 weeks of hard chemo, this resonates well. It’s sort of what I’ve been hashing over with my therapist the last few weeks anyway because I have a lot of anxiety surrounding falling blood counts, hair loss, the unknown, etc.
The other thing my teacher said was that we’re all looking for truth, beauty, and immortality and that these things are boundless! For some reason, that just really made sense today.
Tuesday, August 12, 2008
Yesterday was not my greatest day. My stomach was quite unhappy actually. Instead of going out with my roommates giving Jake a proper send off, I lay in bed half listening to This American Life Episodes that a friend sent me last time I was in the hospital. Periodically I would wake up, resume the fetal position, hear Ira Glass’ soothing voice and then pass out again. At some point in the middle of the night I managed to finally void my body of every thing offensive and when I woke up this morning I felt so great!
There's nothing like feeling terrible to make you appreciate feeling great! It’s like when you have a horrible hang over and you finally manage to sleep it off. When you wake up you walk around all afternoon marveling at how amazing it feels not to want to die! That’s sort of how I felt when I woke up. Like, yes! To celebrate I went to a yoga class and sweated out lots of toxins and got myself good and tired. Awesome. So far, my lunch is sitting gently in my stomach. When I was meditating in yoga this morning I just focused my practice on gratitude towards my body for being well today.
I love yoga. I am going to try not to get too woo-ey about it on here, but it’s been everything I’ve needed. I feel like it’s helping me heal my body and my soul. I feel like I’m rebuilding myself from the inside out. I am so grateful for my teachers at Yoga on Beacon and that I can go so often. I am in a unique position at the moment—there’s not a lot going on in my life beyond treatment and I can’t really plan much for the next few months as I go with the flow, but there are 4 yoga classes a day all week and so it’s something I can always fit in or use to kill time constructively. And that’s all I’ll say for now.
Oooh, I love you!
Monday, August 11, 2008
Would you believe that there’s a “Blogging for Blood Cancer” week and that this is it? Well, believe it, baby! Since I love blogging and in particular, blogging about blood cancer, I thought I would try to blog every day this week!
And how appropriate too. Because instead of feeling all healthy-like I am feeling pretty cancer-y today. My chemo from Thursday night is starting to take effect: my mouth hurts, I’m tired, my body is SORE from yesterday’s yoga class… Oh, cell death!
But before everything started to suck, I had a nice weekend. On Saturday I went to a community garden work project (yay community! yay gardens!) where there were goats! I love goats! And then my mom and I went to Nordstrom and bought new clothes. When I got home I forced myself to purge my t shirt drawer down to the scant few items I actually wear. Yesterday I went to yoga, had lunch at Geraldine’s (cornbeef sandwich, fries, diet coke, coffee) and then writhed in pain all afternoon because hello! my GI track is dying too! Buy I rallied for dinner at the Lemongrass with the Christinas and my mom. God, I love food. However, I think it’s back to wheat thins and bananas for the next few weeks while I wait for my stomach lining to come back…
Saturday, August 09, 2008
On Thursday night my counts were finally high enough to start my final round of Bad Chemo. Bad Chemo is 3 weekly doses of Danorubicin (adriomyacin) with Vincristine and steroids. This is followed by 1 dose of Cyclophosphomide and 8 Ara-C shots. Then Bad Chemo is over! After Bad Chemo comes 4 more weeks of the Methotrexate and then, then, then they pull the Hick?
So the bummer about Bad Chemo is:
-hair falling out again
-possible mouth sores, exhaustion, neutropenia, anemia, fevers, etc.
Dr. K is letting me do all of this out-patient if I promise to let him know immediately if I start running fevers. I also have to promise to check myself into the hospital willingly if things go south. Bad. It's about a 50/50 chance that things will get yucky.
Precautions involve avoiding germs like there's no tomorrow. I dont' know what this means for me and yoga because yoga involves rolling around on (mostly) clean floor and getting so sweaty my bandage falls off the Hick. I would be really sad to stop practicing for a few weeks, but even sadder to go back to Swedish 12 East! (For those of you not in the know, this is the Onc wing of the hospital where I'm treated.)
Just in case people were wondering about doing helpful things for cancer patients, I think the big thing to do is get out there and give away your beautiful healthy blood. Over the course of the last 8 months, about 36 awesome A+ blood donors gave one unit each that helped me with low platelets and non existent red blood cells. Thank you, blood donors!
(Is the Prozac working or what!)
Friday, August 01, 2008
I think Wolverine would probably give them a slashing.