Born to Run / Don't Stop 'Til You Get Enough / The Seattle Rock N' Roll Marathon

I really wasn't born to run. I am slow like a turtle. And I didn't really start running until late in college, and it was on my own. I never did track or cross-country, I only ran when I had to for field hockey in high school. Coach Pat Mihalko yelling, "C'mon, Ladies!!!" (which, if you read my MRI post gives a whole new meaning to her intense commands.) I started running three mile runs my junior year of college and worked up to six now and again. Either of those seemed like forever. I was 25 or 26 when I ran my first organized 5k (which I am forever grateful for Mary and Nicole pushing me to do with them, it changed my life) -- and was ironically the Susan G. Komen breast cancer run. But I soon made the connection that running for me is a mood enhancer, stress reliever, and depression dampener, and that I feel like a completely different person after a run. I love that you only need a pair of sneakers. No gym membership or fancy equipment, just your feeters and will power to get out the door.

I say all of this because I feel like a sham calling myself a "runner" in front of "real runners." The ones who truly were born to run. But the turtle in me doesn't stop 'til I get enough either.

Last Saturday my girlfriend April and I ran in the Seattle Rock 'N Roll (HALF)-Marathon. Let's be clear about that "half." I am no hero, I promise that I will never run a full marathon. My knees would never make it. But it is 13.1 miles.

Shawna and Lisa are the real heroes here. Not participants, they picked us up at 5:30am to drive us down to Tukwila, a city about 13 miles southeast of Seattle (I just asked Rob, "Is Tukwila a 'city' or a 'town'?" Reply: "It's a shithole." So I'm still not sure.) They were awesome support especially since we were all up at 4am, it's now almost 7:30 and we're not there yet. April had decided that since the marathon wasn't benefiting anything, that she'd make the benefit -- me. So when I tried to bag a couple of weeks ago it wasn't going to happen. She bought all four of us a different "cancer" themed shirt for the benefit. I LOVE mine! It says:


We're putting the timing chips on our shoes and getting ready to jump out soon when April realizes we need to fill out the emergency medical info on the back of our numbered bibs so that when we fall down in exhaustion they know where to dump our bodies. I'm filling everything out and then got to the last part, "Your Medical History". I am so tired I can hardly see straight and then I see what I wrote. "Hahaha! Hey you guys, I just realized I wrote, 'Ok' ...and then after a minute remembered and had to add, 'but have breast cancer.' We were crying we were laughing so hard. I am so used to never having anything wrong, this is still so new to me. We decided it was awesome to forget you have cancer. Oh yeah. That stuff.



We were in traffic for what seemed like hours and they finally dropped us off a half-mile from the starting line. There were about 15,000 people doing the half, and about 10,000 doing the full marathon. Traffic.

START. Everyone is yelling and waving their arms and we're off. The idea is that there is supposed to be a live band playing every mile. The first one we see, the band is playing a Tom Petty song, runners are clapping and yelling, "Yeeeeeeewwwwwwwww!!", cheerleaders show up here and there along the sides, other groups shouting out encouragement, the runners yelling back all excited. This happens for about the second band too. By mile 3, not so much. Everyone is a little quieter. Woo hoo. Yey. April and I discuss that she wants to walk for a little bit after mile 3, but I had told myself I wouldn't try to walk before 9.

The reason why I'd tried to skip out of this event was because all of the time-consuming doctor appointments, trying to work, trying to catch up on medical reading every night, trying to make so many decisions, total exhaustion from all of this ... all of it sidelined me from running. One week before the marathon, I'd gone for one quick 4-mile run -- and managed to re-pull this ridiculously painful muscle on the side of my pelvis above my hip that had just mostly healed. After limping all week, I really could not see, even the morning of this run, how I was going to do it. And the longest run I'd ever done -- and it was 1-1/2 months ago -- was only nine miles. Over nine miles, my knee starts to kill. So that was my goal, to get to mile 9 and then walk.

MILE 4. April and I separated and now there wasn't anyone to talk to so I started really looking forward to the bands. Mile 4 stage was totally empty and the amps are playing... Tom Petty. Mile 5 is the exact same scenario: empty stage, no band, radio playing... Tom Petty. Really? Do I need to hear "Breakdown" already at only mile 5?? How is this inspiring? And the miles seem really long too when you are rewarded with ... nobody.

Every mile marker also has a clock. I'm starting to feel like maybe I'm running 11-minute miles. I'm great with that. My goal was 12-minute miles.

MILE 5. Running through these neighborhoods, there are all kinds of residents out in front of their homes cheering people on, squirting hoses to cool the runners, or they're just there to see the road closed and 25,000 people run by their house.

I pass yet another empty stage, this time no music, not even Tom Petty, but still I hear music coming around the corner. Is that...do I hear... ohareyoukidding I so need this now... it IS! This family was awesome. They had erected a 6-foot tall by 3-foot wide Michael Jackson tribute, a collage of Michael headshots and dance poses, along with framed photos of him that they were holding up over their heads. The older parents were hunkered down in lawn chairs boppin their heads to the beat near their iPod boombox while their adult children were walking around groovin and clapping to one of my all time favorite dance party songs, "Don't Stop 'Til You Get Enough." I think I sped up to a 9-minute mile I was so crazy energized. I finished mile 6 knowing that was a 10k and it felt like nothing. I wish I could have stopped and given each one of them a hug for that.

Mile 7 8 9. I realize I'm now running the portion of the Danskin Triathlon (also benefiting breast cancer!) run-route. I did the Danskin three summers in a row, '03, '04 '05. I take pride knowing that the best shape of my life, ever, was when I was 35 and the last tri I did then was my best time. I never thought that'd be possible. Just throwing that out there for encouragement for the aging. Anyway, I say to myself, hey, I didn't have to swim half a mile and bike 12 to get here this time, I just had to run. So those miles fly by. Two runners pass with t-shirts that say, "Are we in Seattle yet?"

Mile 10. Huh, this is weird. I'm over nine miles and my knee isn't bothering me, and still no sign of that pelvis muscle thing hurting. And I really think, "You know what? Cancer, you really did pick the wrong bitch." I'm totally elated and pick up my pace.

Now I'm confused. At some point the Halfs and the Fulls separate and go different routes. We're on closed I-90 and I see this petite adorable blond girl next to me with a Full bib on. I panic. Holy cow, did I go off with the full marathoners? Am I running 26 miles now? What's happening. I decide this girl is like a little chipmunk. I express my mild panic and she assures me we've rejoined routes together. Somewhere here we enter the I-90 tunnel. Yes, shade! And I hear an actual band in there!

No, not awesome. At all. The tunnel has no breeze whatsoever, it's humid and hot from all the bodies in there, and I am clearly stuck in a cloud of Ben-Gay smell that I cannot out run. For like a mile. The band is great but unlike in the fresh beginning of the race, there's only like three people even looking at them as we pass. Someone gives a weak thumbs up to them, someone claps off rhythm. Finally we're outside and running up the long overpass and I go by a runner who's down on the ground with medics. Poor person, on a closed gravely highway, sweaty and pressed up against a greasy dirty concrete barrier. Not more than another 50 feet, another person down with the medics bit around her too. I'm guessing both were heat exhaustion. That tunnel was nasty business.

Mile 11. I see the Chipmunk ahead again. She seems so perky and has also ran an extra two miles than me because she's on the Full course. She's so tiny she finds these little holes to pass runners. The crowd's whole pace has really slowed down now. Up on the overpass we have a beautiful view of the city and the water. I feel inspired and not tired, so I start to chase the Chipmunk for a while. But unlike me, she's going to have to run another 13 miles! I can't even imagine. I only have two more. So it doesn't seem odd that I pass the Chipmunk and take off. I can see Qwest Field Stadium where the finish is supposed to be. Yey!

At this point my goal is no longer to make it to mile 9, or just to finish -- now I'm greedy, I want to do it for time. I figure what's two more miles? I'm amped. I'm high on endorphins and they're busy screaming at the top of their lungs at this stupid lump. During this whole run I kind of wished I had a sign on my back that said, "I have breast cancer. What's your excuse?" But I decided that, while I'd like to raise awareness or be inspirational for someone, I don't what to be a total J-hole either. I could just see someone tapping me on the shoulder and saying, "A spinal genetic defect from birth. Why don't you go screw your self-righteous self?" Right?

But the point is I haven't felt this good in forever. I'm only getting winded because I've picked up my pace to a real run, no turtle about this. But, when you don't read your paperwork and at least glance at the race route, you can over-psyche yourself. While I could see Qwest Field from the overpass and thought I was almost there, I didn't realize the route enters the city and then spirals around and around and around until finally you get to the field. But whatever, I got there, sprinting the last mile, and finishing with a time of 2:10:16, averaging 10-minute miles, placing 5314 out of 15,610 finishers, and the farthest I'd ever run in my life by three or four miles. I was so excited!

I had surpassed all my expectations and felt totally fabulous at the finish. I called Lisa and she said, "You rocked the Rock n' Roll marathon!" That's right, Lumpy. (My lump, not Lisa.)

It's been two days and I'm still not sore. Because the surgery and treatment will be tough, and I know I won't feel this good for a while, the whole run I thought about how I just need to keep putting one foot in front of the other and that's exactly how I'm going to have to deal with this cancer stuff too. And while the finish line is still off in the distance and might be longer or harder than I think, I can still at least see it.

Midsommar... Solstice... it's all about partying with the Vitamin D

In Sweden, where most of my relatives live, Midsommar welcomes the summer. Families and friends come together for large celebrations, singing and dancing around maypoles, flowered wreaths in hair, special foods and drink, it lasts for two or three days, whole cities are empty, stores and businesses closed...AND that's the time of year when it is light for about 24 hours. It's a big deal. In Seattle, we have our own left-over pagan rituals: we go to the Fremont Solstice Parade.


This year they said there were upwards of 500 naked bicyclists. When I first moved here '96-ish, there were small bands of rogue naked bikers that would whiz! by in little packs as if they were out-running the cops, or the Naked Police, and everyone would clap and holler and they were always the unofficial kick-off to the parade. Organized in that subversive kind of vein. And they grew in number over the years. But I don't know if it was in reaction to the neighborhood changing from a hippie-artsy-funky part of Seattle into a condo-fied, frat-bar nightlife kinda place so that when a couple of years ago some people complained that somehow their little Johnnies and Suzies were being permanently scarred for life if they didn't cover their eyes from seeing some body-painted smiling granola girl with beautiful teets happily pedal by with long hair flying all around... if this wasn't the final straw and set off a backlash explosion of naked bikers this year? Or is the economy driving us to these liberating acts because it's cheap and easy? Or is it because we had a month long drought here, sunshine weather in the 70s-80s for days on end and we can't help but celebrate our great fortune while the east coast suffers in the cold rain? (Don't think we don't enjoy rubbing this in, oh we earn this!)

I'm with Johnny and Suzie on the life-scarring moments when the occasional hairy, white-fuzzy-woolly-mammoth-like, liver-spotted, usually wearing glasses for some reason, (much) older guy who is enjoying the freedom of his bike and open-air weenie a little too much cruises by; it is a bit much to take. Way too much "natural" human stuff going on there. But like anything in life, Little Johnny and Suzie, you've got to take the bad with the good. And this year their was so much good. The au naturals were few and far between, now everyone goes all out with the body paint and costumes. There were naked superheros, naked Adam & Eves, even a naked Sasquatch (perhaps my favorite), ladybugs, insects, a whole pack of maybe 50 people each painted a color of the rainbow, including neon colors. They went by, hundreds of them, I swear it took like five minutes for them all to pass. I was mesmerized. And obsessed with boobs.

The whole parade, I couldn't stop staring. I've been obsessed lately anyway, but going to a half-naked parade really ups the ante on my distraction. And then pile on the huge crowds of parade goers. Those breasts are all kinds of different shapes, sizes, proportions... and health. I wonder whose are totally "normal" and healthy. Who's had cancer. Whose are reconstructed. Who has a lump but has no idea yet. My friend April saw a brilliant t-shirt online that read: Of course my boobs are fake, my real ones tried to kill me -- whose are in the middle of attacking them right now, like mine.

I told my buddy Adam, "I just can't stop staring at every woman that passes by me these days...I can't stop!" We then immediately walked past the Nudist Camp Colony booth or something like that, with 4 or 5 of its members posing for photos. Some of the folks that belong to these nudist places are really not the same people that I happen to dream about sitting down to dinner naked with. These two women posing were really in that category for me. Adam said, "How about those? Can you stop staring at those?" "Yes. Yes. Yes, in fact those I can, Adam."

Look! It's my totally awesome friend and hair stylist extraordinaire, Angelo! He was the Queen Bee with his party of flamenco dancers and paper maiche Ferdinand the Bull that actually snorted out some sort of smoke. Bee's stinger is in his holster. (Note the half-finished condo project behind him that might get finished, and if so will definitely be rental units; the new look of Seattle's economy.)

A lot of people have commented to me on what is seemingly my good attitude about this Lump Stuff. I do need to keep my head above water, and the only survival skill I've ever known is to laugh my way back up to the surface and I can get through anything. But no need to worry, I am having my share of truly crappy, kicked in the gut, I'm pissed, Why Me?? moments.

Friday I had to make I don't even know how many calls to line up all my next appointments when I needed to be working. It exhausted me beyond belief. Even just speaking on the phone to the receptionist at a plastic surgeon's (who a friend told me looks like a 60-year-old Cat Woman, I can't wait to meet her) put me into a tailspin when she filled me in on some super important info about a misconception I had about lumpectomies... and after hanging up proceeded to have a 15-minute crying jag in our work parking area. All I was trying to do was make an appointment. (She had also stopped mid-sentence at some point and said,

--How you doin', Hon?
--What?
--How are you doing?
--Me? Uh, I'm ok. I'm just ...really... tired.
--Oh, Hon ... you sound tired...
--Uh... uh...sniff sniff sniff... (meekly) I am... thank you. sob sob sob...)

That just set the tone for the rest of the day so that whenever I saw a gum wrapper on the ground or heard a bird chirping or looked at my bitten nails, the more random the better -- a surge of uncontrollable tears just poured out. All weekend. And part of this morning when I walked into the Cancer Library at Swedish. So if anyone is concerned, rest assured I am spending some really great quality time being absolutely miserable. Hope that helps.


But then... I have these wonderful distractions with friends, like Solstice! I love a parade. Look above here. Look at these beautiful works of art coming. One blog down the road is going to feature just them. I was stunned, inspired, and taken out of our earthly realm when they circled by. Giant dresses all made out of PAPER. They were amazing. More later.

Celebrating the glorious sun, the solstice. Celebrating that incredible, fiery source of Vitamin D. Of which one lab report said that I was ridiculously, abysmally deficient of. I had just started taking D a few months ago. Even that was a joke apparently if you look at my numbers.

A breast cancer surgeon told me Washington State is ranked third highest in the country in breast cancer diagnosis. There are some theories. One is that the Pacific Northwest is one of the areas of our country that is most deficient in vitamin D. We're also a highly educated population so perhaps we know to get screened often. And particularly in Seattle, many women wait until much later in life to have children which they know causes a higher chance of having breast cancer than someone who has children earlier. (Note: I don't pretend to ever have any facts right. And maybe I misquoted her. I'm way too tired tonight to double check this. Aren't blogs the last place to go for correct facts anyway??)

I celebrated Vitamin D this weekend. Tomorrow I am meeting with a Naturopath/MD to figure out what my new dosage will be. Among a whole bunch of other things that will help me get to a healthier place when this is over...and feeling closer to the sun hopefully...

MRI at the MoMA

Yesterday we were at the surgeon candidate #1. Here I am before I am completely exhausted by information and the idea that I need to figure out what I want out of life. I wore my Jamie Kreitman (Magda's friend) bunny shirt that Mags gave me few years ago. It's got this big, soft, fluffy cottontail sewn on it. I thought I could fool the surgeon that this was my lump. She didn't go for it. I'm telling you, she's smarty-pants.

(Oh, and Magda, this is the first time wearing it in years. The bunny tail was dangling by a single thread after an outrageously crazy night at a gay dance club a few years ago. Apparently gay men cannot get enough of bunnies with diamond necklaces and white fluffy orbs and that little cotton ball was completely mangled and nearly ripped off by the end of the very long night. Dozens-- I mean dozens -- of guys yanked that thing. Just did my mending.) Anyway, I want to show some happy pics at the beginning of this process -- to remember when all this might take a turn for the rough and tumble.


Now for today. Here is my good friend Txell (pronouced "Che".) Txell is from Barcelona. She is beautiful and funny and a great storyteller (and single -- just throwing that out there). She is also a teacher and has the summer off. Txell offered to drive me to appointments. Today I broke down and asked her for a ride to my MRI and I am so glad. We had fun and she entertained me through my tiredness and annoyance with the medical system.

Look her, so good -- trying to acommodate my photo request while still keeping her eyes on the road!

Ok, now, here's more like it, I'm starting to get more patient-y looking, right? No bunny shirts allowed in the MRI today. The Super Nice Lady (I am meeting way too many people, I'm losing track of their names...) handed me and said, "Here's a pair of drawstring pants. And an obscenely large robe that should open from the front." She was not kidding. I felt like I was unpacking my tent for camping. It wrapped around me twice. SNLady added, "...and you need to take out any clips in that hair too." (I love "that" hair. HA!) I had to get down on the floor for this. I had six of them in my crazy hair. (Warning: SAD INTERLUDE. I am absolutely terrified of them telling me I need chemo, for many obvious reasons. My hair can be my nemesis. But who will I be if I lose it? Ok, not thinking about it because, again, I do not know yet so I won't worry about it yet...please go back to the light-hearted parts, Jenny... like:) Txell laughed hard and said, "You know, you look like a medical geisha right now." We giggled and giggled.


Long story short, they'd changed up my MRI time to later without telling me so now I am frantically trying to call Bastyr to let them know I will be late for my 3pm. This is how I function these days. My 3-ring binder of info is never farther then two feet from me at all times. Can you see my little black book? That's where I write down notes of what's said at every appointment. See the cover and the first two pages, they are already covered in taped-in business cards of all the people I need to see or have seen. I'm frantically trying to call but they are nicely trying to grab me to put the IV in. Che grabs the phone, tells me not to worry. After the MRI is over she tells me that the appointment will take a full hour, so we will miss it, and she rescheduled me for next Tuesday at 11am because she could tell from the business cards that I had an appt. that day at 1pm, giving me time to eat lunch and get there. I told her that she was just promoted after one day from chauffer to Personal Assistant. What do you do without friends? I don't understand.



The MRI Lady told me to undo my front and "lie on your stomach, put yer ladies in those cup holders, face goes there like when you get a massage, and put your arms over your head." I think I may call my boobs "my ladies" from now on. I've actually never heard that before.

I lie down, face down, ladies in position, big wad of cold medical equipment pressing into my gut and get ready to not move for 20 minutes. I ask her what if I have to sneeze? She says, "Welllllll... don't. I mean try not to, but if you do, it will all go bad and we'll have to do it all again." Ugh.

"Ok, here we go!" she says behind me and gives a big push. I open my eyes into the face-thing and I'm zooming forward and can see everything coming at me. I pretend I'm in the space shuttle and I'm launching. All of sudden she's on the other side, in front of me and waving. "Can you hear me?" I have earplugs in like I'm at a music show. "Isn't that mirror cool? It looks like you're driving this thing, right?" It is kind of cool. I'm physically looking down at the floor but the mirror makes you see straight ahead. I can see my hands in front of me (which I have in loose fists in an effort to keep them warm for 2o minutes) and everything going on at that end of the tube, didn't feel claustrophobic at all. She did say I could wiggle them (and only them) when my arms go to sleep, but I'm too afraid to mess this up.

Then the freaky loud sounds begin. I'm trying not to move so my breathing gets deep, and the more my breathing gets deep the more afraid of moving I'm getting so the breathing gets deeper and more I think I'm moving my body. On top of this I can feel the gunk that she said I probably wouldn't even notice start flooding my arm through the IV. It feels like someone is injecting cold Kool-Aid into my blood and it's going into my forearm and up past my elbow to my upper arm.

This is getting so mental and I do NOT want to do this again, I need to do something. So I stop pretending I'm with NASA and I start listening to all the crazy loud sounds. I now decide that I am at the MoMA, and I'm checking out a sound artist's experimental work. I ask myself questions like, "How does this art make you feel?" "What do you think the artist's intention was with this piece?" "Why do you think he chose the medium of sound?" Dozens of these funny art questions that I say to myself, but I use Laurie Anderson's voice, which soothes me. I guess I must have done this for most of the 20 minutes. I'm mulling over that this guy is like an 8-trick sound pony when I start hearing a man's voice saying very quickly over and over "singsingsingsingsingsingsingsingsingsingsingsingsingsingsingsingsingsing..." while in stereo right is a bass "wahwahwahwahwahwahwahwahwahwahwahwahwahwahwah..." and like four other sounds go off and the whole thing is shaking a little more than ever. I decide I'm pulling this guy's NEA grant when MRI Lady says, "And that's it! It's all over!" I'm so happy. My arms are half asleep, I'm groggy from getting so relaxed and spaced out in the MRI MoMa, I climb off this thing and almost fall over, terrified of this stupid IV that is still jammed in my arm.

MRI Lady says, "So, guess what? We just took about 1300 photos of your breasts. I bet The Girls have never gotten so much attention before!" The Girls. I might put this woman in Txell's car and call this the best medical day ever. All I can say is, "Well, I guess you'll know them better than I ever will." We talk more as I get oriented and she's saying something about, "Yeah, well when I was in there for 45 minutes yesterday blah, blah, blah..." I have to interject, "Wait -- do you go in here for fun??" She laughs and says no, they were doing a test and "all they need is a warm body, and I'm like hell yeah I'll lie down anywhere for 45 minutes!"

I get dressed and Txell walks me down their Stanley Kubrick space age, curved, vaulted, lit neon white hallway*, gives me a big hug and we head home. I love my friends.

*I can see that part of this $4,000 (or something like that) MRI (of which I pay 30%!) must get converted into their interior decorating. Maybe.

Surgeon meeting #1

This is going to be a long haul. I am already getting so exhausted and it's just from information (and mental and emotional) overload, nothing even physical yet. We left Cherry Hill Swedish at 12:00. Swung by Patagonia to pick-up an emergency bridesmaid dress for my friend Sarah's wedding July 25th. I was starting to stress that time would fly by and I'd have nothing for it (we can pick out any dress, just need to wear black -- how fun!) so at least now I have something. We ate at Aqua Verde outside and debriefed Rob and David Yu while still processing info myself. We kept talking about it all as we walked through U Village. Anthropologie was out of the dress I'd seen in their catalog (good thing we went to Patagonia!) and then a-ha! found another great dress at Banana Republic. Somehow finding all these black dresses are suddenly making me feel like I am sooooo on top of everything.

Hmmm. What an illusion! I could hardly drive back home my head was so heavy (literally), fell asleep on the couch and woke up drooling to my mom calling. Unfortunately not the biggest news other than I'd found two possible dresses!

There was actually a lot of good news today, the ultimate being that I have OPTIONS. Which is great but also what is making my head hurt so much. I can go either way, with a lumpetomy and radiation, OR a mastectomy and probably no radiation. Don't know about chemo till I meet the oncologist. Anyway, it's up to me and what I want. What do I want??? Ay yi yi yi yi.

I liked Dr. Buchanan a lot. She's super smart and I liked talking with her. She has nice hands, I checked them out lots since those are her tools. Here's a photo of her.


I asked my friend (Dr.) Sanders what he thought about different doctors I emailed him, how he would read their bios, etc. since he doesn't know them. He said Buchanan had the best credentials of any of the breast cancer surgeons at Swedish. He made an interesting point that younger doctors are probably trained in more current information and practices, but lack the years of experience, and vice versa for older docs. As far as I was concerned, under her Personal Interests, she hit a home run with me, this might be all I need to know about her:

At the end of the long meeting basically we decided that I need to meet with oncologists and a plastic surgeon to help make my decision. And in all my spare time, meet more surgeons for second opinions and to see if I feel more comfortable with someone else and with what they have to say. Which is good that I like Claire a lot right off that bat, it relieves some stress. Exactly like the black dresses.

So, after meeting a social worker and two more RNs, I got a PILE of business cards dumped in my lap of all the people I need to meet and have appointments with:

Previously scheduled for tomorrow, Thursday 6/18, is my MRI at 1:15 at yet another new place I have to go, First Hill Diagnostic Imaging with Dr. Bruce Porter who everyone keeps alluding to as one of the best radiologists in the city. From there I need to shoot over by 3pm to Fremont to meet Dr. Natalie Freedman at Bastyr who will be going over the results from all my blood work, etc. that we did the first two weeks. The oh-so lovely and talented Txell (pronounced "Che") Ampurdanes will be chauferring me around. I'm excited to spend the afternoon with her!

The pile of cards just added:
Monday 6/22 9:15 meeting with a Genetic Counselor to talk about possibly taking a $3k test to see if I carry the BRCA 1 & 2 genes and the implications of doing that -- and to see if insurance will cover it. And the test once taken takes 3-4 weeks to get results back.

Tuesday 6/23 1pm meeting a Medical Oncologist to talk about systemic ("all over") treatment and the pros & cons of the lumpectomy vs. mastecomy from this angle.

Friday 6/26 3pm meeting my hair stylist for haircut and (dry) happy hour with him. He's very integral to this health plan too, you know!

Saturday 6/27 run a Half Marathon. And this going to happen HOW???

Monday 6/29 1:30pm meeting a Radiation Oncologist to talk about the weather I hope. At 2:30 Running to another part of the same building to meet Dr. Beatty (ok, great omen right there, huh Dan & Sarah!!) as a 2nd opinion surgeon.

Tuesday 6/30 39th Birthday! Yey.

Wednesday 7/1 12:15pm Meeting back up with surgeon Dr. Claire Buchanan again to tell her what I'm going to do.

And not scheduled yet somewhere in there is a plastic surgeon whom two people have recommended to me ("He does beautiful work!"). And find more 2nd opinion doctors.

Claire says she would probably do this surgery in no more than 4-6 weeks. I don't understand the math of that and all I have to do before then. I can already tell this is going to be the fastest month of my life...

Behind the 8 ball

It's 10:30pm and I think I recognize what denial might be. I have to meet the surgeon in less than 12 hours tomorrow and I have NOT:

-Filled out my "New Patient" paperwork
-Read Chapter 17 on surgery options in Dr. Susan Love's Breast Book that my sister Julie assigned to me. (She's driving up from Portland after work tonight to go to the 9:30am appointment with me. She is going to be so annoyed with me.... she also told me to:)
-Make a list of the supplements I'm taking and
-Print out the list she forwarded me of "10 Questions to Ask the Breast Cancer Surgeon" and
-Make a list of questions of my own

And that would be: no, no, nope, nope, and...not yet. Ok. yes, clearly this is big time denial. But I will get right on it after I finish this post, I promise! For reals.

Anyway, FARRRRRRR more interesting to me is this envelope I received from the Breast Cancer Center with my thick wad of New Patient paperwork to fill out:

Have you EVER seen anyone use this handwriting device before???

Instead of doing the above boring lists of stuff, I have been sitting here mulling over this envelope address for a good long time. Who writes like this? And carefully spells out "Washington" like it's 1943? I'm fascinated with this person. (Doris, can I get an analysis here?) I imagine her neatly writing this out, adding the little devil tails as a final touch, and her saying in her day-dreamy head,

"Dear Jenny Joyce... so sorry to hear about your lump. I wonder what you look like? I think you look like this (see below photo). Love, The Swedish Breast Care Center Admin.
ps. Can we be pen-pals?"

ripped off the web from sticker giant.com

And you know what? I think I'm going to start imagining I do look like this. In fact, I may want to come back from surgery looking like her. You people won't even recognize me! I'm starting over! Or maybe I'll get this tattoo. Except without the "Bad Luck." Maybe "Marginally Ok Luck" or "Good Luck Overall, Just Some Big 8-Ball Problems Right Now".

I haven't done the above list because I'm nervous. Dr. Claire Buchanan is going to be the first person who really gives me some big straight poop on this deal. And it's also like an interview, the whole time I'll be wondering, "Of all the people in this whole wide world, are you the one I'm going to trust with my life?" Ugh. I'm looking up other doctors for second opinions because that is what you are supposed to do. Dr. Claire is who Swedish Health System assigned me. Tomorrow she'll do some tests (not sure what) and will look at my films from the mammogram, ultrasounds, and biopsy and we'll discuss surgery options. And dates I presume.

So far I've just been absorbing. One minute someone tells me I'll probably get a lumpectomy and some radiation and I'll be fine. Yesterday our friend's wife who's a pathologist said it could be a double-mastectomy because of my age. I don't let myself get excited when I hear potentially great scenarios... and I don't freak out when I hear the bad ones either. Because right now I just don't know, so freaking out isn't going to do me much good. But tomorrow I will be getting my first real-deal opinion. Yikes. It does make me nervous. Suddenly this lump is getting serious with me. (But it doesn't know that I'm about to get serious with IT. Uh huh, that's right.)

Ok. Out of denial, into the paperwork. But a part of me can't stop thinking about the "Bad Luck" tattoo. Both my breasts may be behind 8-balls, but I'm going to think about the protective, powerful black cat watching over her instead.

Frequently Asked Questions

-Did you find the lump or your did your doctor?
I did, May 17th. We'd just had our neighborhood parade and a great bbq afterward. I was taking a bath later that night, sitting up, and I was sooooo happy I was literally splashing and singing something like "Rubber Ducky" when I went to move soap suds from my neck down to my armpit and on the way my hand went: **bump bump** -- over some crazy huge lump. I yelled out loud to the shampoo bottle, "Wait...seriously... WTF is THAT ???" The shampoo bottle blinked and said, "Wow. I really don't know..."

I calmed myself down and went over what Dr. Woo had told me the year before when I sheepishly admitted for the umpteenth annual exam (same conversation every year), "No, I have NOT been doing self-exams, what is it that I'm looking for again?" And then he always says, "Something the size of a pea, and hard." This wasn't like that. It just felt like a cyst. Or something swollen. I wasn't worried. Sort of.

-What size is it? What does it feel like? Where is it? Can I touch it? Does it hurt?
I don't have an exact size of it yet. I can't remember if that happens when I meet the surgeon, or when I get an MRI. And I'm not sure if they measure the whole thing or just the cancerous part. To me the mass feels about the size of a large apricot pit. It feels like that too, but if you made it slightly gummi-like. But it changes. It gets really big, then sometimes it seems small, sometimes it feels hard other times it feels swollen.

It's on the top part of my right breast, closer to my neck or heart than my armpit, which apparently is good. The closer to the arm, the more chance of lymph node problems I think. See photo.

Right here.
And I'm holding onto my hat so it doesn't blow away.

Yes, please ask me to feel it. I want to educate people what it may feel like. Nope, it doesn't hurt. And I feel fantastic. Still running 6-8 mile runs a few times a week and in great spirits. But that's the hard part. I feel SO healthy and yet I've got this stupid bump hanging on me like a monkey on my back. Except he's on my boob.

-What was the diagnosis?
So far they are calling it an infiltrating ductal carcenoma. Welcome to my non-medical world where I'm on an insane learning curve of lingo and acronyms and so much information coming at me from so many different people my head is going to pop off.

Anyhoo, from what I understand --and could be completely wrong-- it sounds like a bunch of cells blob together and form a neat little mass. And this state is called 'in situ'? I think I have this somewhat right. My cancer is in milk ducts and it's gone from in situ to starting to hang out a little bit on the inside of these tubes and on the outside. Hence the 'infiltrating' and the 'ductal'. Anyhow, this is what they've determined so far from just the initial mammogram and the ultrasounds and all the stuff that happens with the biopsy. So who knows, this could change.

-So, wait, go back to the bathtub again
Oh yeah. So I calmed down thinking there weren't any hard peas to be found and as always I very easily talked myself out of any kind of worry that anything was wrong (this is how I ended up with a staff infection in the past) but some reasonable tiny part of the back of my brain was a bit shaken and got me over to the phone to leave a message for Dr. Woo at 11:30pm to please try and fit me in the next day, Monday May 18th. I had bad sleep and weird dreams. Awoke to his office at the Swedish Clinic calling me at 7:15am saying they had time at 10. Good.

Well, Woo thought there was definitely some cyst-like thing there and I shouldn't get worried because he couldn't feel anything hard...but... "we need to get this looked at and confirmed. You know, just to make sure." (Wait. That step wasn't supposed to happen. He signed me up for a mammogram. Um, ok. I was supposed to be dismissed like the last time I came to him with a mystery lump four years ago and he said it was nothing and to go home.) Oh, and they only do Fridays at the Ballard Swedish Hospital and this coming one was booked. I have to wait two weeks. Argh!

Friday May 29th, I have an 8:30am mammogram appointment, so excited to get this over with and have a day off. It's hot, I want to go swimming!

I'll speed this up: paperwork, paperwork, gown, leave pants and shoes on, go by machine, get squished, mushed, pinched, vice-griped, don't move, and if we see something not quite right we'll do an ultrasound. Go in little cold room, wait...wait...wait... Uh, Jenny, we'd like to do an ultrasound. Lie down, cold chair, cold gel, lots of talk about on the screen, I'd like a picture of that... and that... and that... ok, go change and meet the doctor in the waiting area. Well, we definitely found something but the only way we'll know if it's cancerous or not is to get a biopsy. It's Friday, is there anyway you can do this as soon as possible, like Monday or Tuesday? (Me: Ummmmmmmmm, what's happening? Where's the part where we all laugh that it's just a cyst and we did all this silly testing for nothing. Let's go home and see you after 40 when you are supposed to start having mammograms. Ho ho ho ho ha! Oh and wait -- my parents are coming Monday... how is this all going to work??)

In the meantime the doctor runs away. Nurse is talking to me about stuff I cannot even remember. Doctor comes back, sits me down and starts saying that if I can get up to First Hill Swedish Hospital across town and sit it the waiting room for a couple of hours, she spoke to her colleage up there whom she loves, trusts and is the best, she'll try to fit me in for a biopsy today. The results can take up to four business days so she'd rather have me get it in before the weekend. Oh yeah, and you CANNOT go swimming. (First of many notes to self right then and there: this process is really annoying and inconvenient.)

I am driving up there and I'm like "WHAT is going on here? This is crazy over-reacting!" This is getting long so I will leave out most of the details of some amazing events during this same day like when two couples in two pick up trucks drove up and asked me if I wanted the abandoned dryer in my backyard... and let's just say that by the end of this interaction the women said they were Prayer Warriors, honked their partners to stop driving away and the four of them deliver a pentacostal-like prayer in the alley for me ending in hugs and tears all around. They said the dryer was going to keep me from having bad cancer and drove away. My Dryer Angel. And then after my biopsy I met Brenda, this colorfully patterned and bedecked older black woman (man? transgender? I really could not precisely tell you) with a giant hat, silver teeth and a wheeled-walker, she (?) and I had a fantastic 15-minute talk in about a 30-yard stop-n-stroll together ending with her placing her giant warm hand on my shoulder and delivering a long, loud prayer of hope and love for me in front of First Hill Swedish Hospital's parking garage.

At this point I knew I might possibly be screwed. I hadn't even gotten back the results of the biopsy and beautiful strangers were already praying for me.

The biopsy results did not take four business days. I had it done late Friday afternoon and they called me Monday June 1 with the news at 3pm. It was so soon I wasn't ready for it. And at that very moment my parents were somewhere in the sky on a plane flying out, a trip they randomly planned a couple of months before. Hi Mom and Dad! Guess what's new?! Oy. But perfect of course. They were here, such great support and my mom could go to a couple of long appointments with me and get the big low-down which I am so, so, SO thankful for. I can't imagine relaying that all by phone... with a 3-hour time difference. And no facial expressions.

-Mammograms, ultrasounds, biopsies -- do you have insurance?!
YES thank goodness. I have been paying through the nose for a plan that was canceled a couple of years ago. They weren't making $ on it so they gave it the boot to newcomers. Instead they have been punishing me with a premium of $327/month. OUCH. I meant to look into cheaper plans because why am I paying for this when I am so ridiculously healthy? And really, I was in perfect health (I thought) before ol' lumpty dumpty showed up. Please please please, have someone who might understand look over your insurance and see what is actually covered. It looks like even with this great insurance I will still have to pay $10-15k out of pocket. But it sure beats $100,000 to $200,000... **whew**

-So what happens next?
In the past two weeks I've been tested, poked, prodded, blood work, peed in a bottle for 24-hours, pelvic exams, informational appointments. And I didn't know how hormonally tied breast cancer is. You need to get this test done on the 23rd day of your cycle, MRI on days 5-7, pee in the bottle day whatever...

This is why I feel like this lump is just a big annoyance. It's seriously cramping my summer style. It's been BEAUTIFUL in Seattle this year, we're on day 25 without rain! It's not fair! And now it's tests, appointments, vitamins, supplements, phone calls, all of this information to know and remember. COME ON!!! Anyway, that's what I've been up to since June 1st.

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Anyway, I meet with a surgeon on Wednesday June 17 and I think I will maybe know the size and we'll definitely discuss surgery options (um, because she's the surgeon. I'm getting so tired writing this so late...) Right now it sounds like the two basic ideas are (1) lumpectomy with radiation, maybe chemo (I think chemo is unlikely) and (2) mastectomy and none of that other stuff. And then little variations of these possibilities.

I got back two important test results (ER+ and PR+ tests and HER2neu test -- I won't go into it all because it's boring and I'm confused anyway) -- BUT... they came back as really good results indicating that it's a slow-growing, less aggressive cancer which is GOOD NEWS! Apparently breast cancer in young women is usually very aggressive and they were pleased to see this unusual result. Yeyyyyy!

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I am sure that you are as sick of hearing about this stupid lump as I am by now. If all this gives you any insight into my foggy brain of information overload. But I have to say this: I AM SO LUCKY. I'm lucky I have small breasts and found this lump two months before when my next annual exam would have been, I'm lucky that I have someone helping and guiding me through this entire process (more on this Angel-on-Earth later), lucky my parents and sister were here the first week of this, lucky my sister works in a hospital (= interpreter of medical info), Lucky that this is breast cancer. There's no way I will die from this and there are so many more horrible things that can happen to your health. All I can complain about is missing a couple of days of swimming.

But most of all, I am so lucky to have so many friends and family with so much amazing support and love and help and good vibes and good recipes and good stories and jokes. It makes this lump almost fun! (I just say that to keep myself from getting faklempt...)

Seriously, I love you all.

(And future entries will not be this long winded...)

Um, yeah. This should be fun!

Seriously? As if this year hasn't been crazy enough, now I have freakin cancer? So, oh well. What can I do but go through this, like anything else?

I'm doing this blog not because I want to blab on about poor, poor me (sooooooo not me...) but because I can already feel the mental energy being sucked from brain over this new life development. And I am also beginning to be super rude about returning phone calls and keeping up with email. So I'm throwing this space out there for anyone who'd like to know how I'm doing or what I'm thinking about these days with all of this. Stop in and say howdy once in a while to this cowgirl out in the pasture ropin' in this stupid lump.