Jenny's crazy lump

The Home Stretch

2009-10-27T19:35:00.000-07:00

Only THREE more of the 33 radiation treatments left to go!

I know, I fell off the blog map again. Somehow the monotony of the appointments (everyday except weekends since Sept. 8th) just didn't motivate me to report anything. I've also had a lot of personal ups and downs. Lisa came to so many of my appointments and we were absolutely obsessed with the jigsaw puzzles that are out in the waiting area for everyone to work on. And frankly I suspect this blog would have just been full of puzzle-updates anyway.

The treatments are really manageable. I've gotten very tired over the last couple of weeks, and had the flu for about 10-days. That was fun. I'm sure I got it because I'm so worn down but it happened to perfectly occur just as my skin was getting unbearably burnt and crispy. The aloe vera they give you to apply 2x a day just wasn't cutting it anymore. Bras — even the wireless ones I've been wearing the whole time — were outright too painful. My nipple was like a burnt cookie. My armpit chaffing. So although the flu was no joyride, at least I got to miss four appointments! (They were tacked on to the end of the schedule... no getting totally out of them...) So my skin got to heal for a minute, and the Aquaphor and Hydrocortisone helped turn everything back around to just a bad "sunburn" again.

I go in at 8am and it is great to get it over with in the morning. I have some buddies that I see every day who have their appointments before or after me. I am constantly thankful for this crazy bullet I dodged. There are so many stories (of all kinds of cancers) I have heard that make me:

feel like I am the luckiest person in the world because I didn't have to do chemo
feel guilty that I didn't have to do chemo -- but happy nonetheless
feel like a whiner at times for complaining about what a hassle this has been when I didn't have to do chemo and I also have a curable cancer

I know, I know, I don't belittle this journey at all, but it is so humbling when you see other people's tremendous trials and grace.

So the routine is that before hitting the waiting room, you go straight to a dressing room and put on a gown. I have found the older the gown the better. It's less stiff, ties better and therefore stays on better. Leave pants and shoes on. Do puzzles while you wait for your turn. They call your name and you say Hi to whichever 2 or 3 techs are on that day. My favs by far are Krissy, Tracy and Jude. Pull down the top of the robe, lying down on the movable table, putting arms overhead and grabbing handles. Don't move them anymore. They snap a giant rubber band around your shoes so your legs don't go anywhere. Here I am before they move the table under the machine.

Then they turn down the lights and start saying all of these numbers to each other like "94.7." "107." "96." I hear the same ones everyday as they line everything up. They project the numbers onto you. You can see them here on my chest. They also stand on both sides of you saying these numbers while making little tugs on the gown you're sort of riding on to make minute adjustments making sure you are lining up in the exact spot every treatment. I feel like a sack of sugar being subtly moved.

Then they line up the lasers to my four tiny pinprick tattoos. They come from the ceiling and the wall. At this point I start getting bored and wondering what today's song the boombox is playing. Today was The BeeGee's "Jive Talkin'." Yesterday was Billy Joel singing "...Captain Jack will get you high tonight..." The Eagles Greatest Hits was on last week. Out in the waiting area you won't hear any classic rock. It's more mood music like Enya and Louis Armstong's "What a Wonderful World." Anyway, here are the red crosshair lasers. Under that crisscross is one of my teeny tattoos. You can also see I'm getting red around my armpit.

The last seven sessions are "The Boost." Which means the machine gets superduper crazy close now — an inch or so away — and blasts just the small area where the tumor was — versus targeting most of the breast which it's been like up to now. They tape this heavy rubbery-plastic stuff called bolus over my boob and that almost always hurts my nipple but who cares because it only has to happen three more times! You can see it on my lap "warming up" which it really never does. Ice cold bolus on a sore teet. Tons o' fun!

Lisa could only stay this long to take pictures before they kicked her out so that's why they end here.

So one day I asked about feeling the radiation going through my arms. Jude very nicely let me know that is a complete hallucination, but a common one. He said some people who are radiated in their frontal lobes for brain tumors smell something and they all describe the exact same imaginary smell. (DO NOT quote me on this but I swear he said it was the smell of burning. I think I'm making this up. I would not make a good scientist.)

Oh, but wait! Here's another photo. Too much? Probably. Oh well. Modesty has never been my strong point. Anyway, I wanted to show the clean shape of red from radiation. I wish I 'd taken a pic of it crispy, it was really strange looking. It hurts from time to time but mostly it's itchy and annoying. Again, like a bad sunburn. My Radiation Oncologist says that even after I'm done with the last session it could get worse, but after about 10 days it turns around and starts to get all better, being mostly gone in a month. And the radiation should have helped the scar disappear a little too! Speaking of, that is the scar in the middle of the oval. Looks great, right? The purple oval is from when they were doing the new alignments for The Boost. It's drawn on with a paint pens. The "X" is so that they can line me up super quick and make the appointments faster. And it has a plastic sticker over it so that it won't wash off before the last treatment.

Ok, I'm really tired and need to get to bed. And I am really, really, really looking forward to this whole thing being over soon.

Radiation — Makes microwaves seem like Easy-Bake Ovens

2009-09-08T21:13:00.000-07:00

Yes yes. Long time no blog. I haven't blogged in so long because my arm hurt after surgery (July 30) for weeks using the computer and also, frankly I was so insanely sick of myself and this cancer stuff.

After the surgery I was in pretty good shape other than my armpit swelling up like a peach from the lymph nodes being removed (the sentinal node biopsy) and the lymph fluid was trying to figure out where to go now that two were missing. That finally settled down after getting it aspirated (a needle stuck in and the fluid drawn out) three times and my friend Ben treating me to two massage sessions with his old teacher who specializes in lymphatic massage. Yey!

Then it was a few weeks of dealing with numbness in my upper arm and arm pit which the surgeon said will be permanent -- but in 2-3 months something strange will happen: my brain will just turn a switch and I won't really notice it anymore. I've had to avoid heavy lifting for 4-6 weeks since the surgery. Biting nails is off limits as I could cause an infection that would go up my right arm and cause problems in the lymph area. But the hardest part has been the nerve damage that was done by the sentinal node biopsy when they took the lymph nodes out. My armpit hurts and so do parts of my upper arm. And sometimes it feels like small electrical shocks are going through it. My arm gets stiff and sore. Anyway, the main thing is that my potato chip cravings have gone away and I'm not clocking in time on the couch anymore.

I went back to work a couple of weeks ago. When they told me I'd have to take at least 2-3 weeks off after surgery and then think about going back to work half-days, I thought they were nuts. But that's what pretty much worked out and I'm glad I'm starting to finally feel like I'm out of recovery and into "rehab" now. Rehab to me means slowly getting back into shape and keeping an eye on my arm. I've been going to the gym doing little baby weights and going for long walks and short bike rides. But I am really looking forward to trying a short run soon.

If you missed it in past posts, I don't have to do chemo! YEYEYEEYYYYYYY!! How great is that? I was supposed to start radiation last week but delayed it one week, till today, so that I could have an actual week of feeling like a normal person and enjoying the summer for a whole weekend.

The week before last I went to the Radiation Oncologist and we went over things one last time. Then she sent me to Imaging where they tattooed (yes permanently) four teeny blue pinpricks: one between my breasts, one about 4" lower than that, and two more, one on each side of my rib cage. Those marks act like a GPS system for the machine so they know how to line me up exactly every single time and the beams are 100% accurate in the angles they want to shoot. Then they took a CT scan of me. From that they made a 3D model of my chest and organs and where the tumor was and plan all the different angles for the beam to shoot, trying to miss other important organs and as little unnecessary tissue area as possible.

Last week I went in and we did a dry run on the radiation treatments to see if the 3D model was done correctly. It was just like getting an actual treatment except they didn't use radiation.

Today I did my first radiation treatment. Chemo and radiation are basically the same thing except chemo is taken as a liquid orally or through IV, and it hits your entire system. It's hell. Radiation is done with a beam and hits a local area. A cake walk compared to chemo.

I don't know if it was my imagination -- which was running rampant as I really thought about radiation zapping my body -- but my arms felt mildly electrified. It was freaky, and I'm not sure it wasn't my mind like I said. Today being the first one I can say that it didn't hurt, I really didn't feel anything at all actually. But it is Day One so we'll see if that changes any.

Here's the radiation machine. You're raised up on this bed with your arms over your head grabbing these handles that feel like handle bars on a kid's bike. They move your body around and line up your tattoos with these red laser crosshairs so they know you are in the exact correct position every time. You stay that way and don't move while that circular part of the machine rotates around into different positions, stops, and then zaps away.

It all looks just like this except I don't have the robe closed and I'm not actually smiling after they all leave and shut a 10-foot wide steel door that is 1-foot thick. I do get to keep my pants, belt and shoes on-- so convenient!

I won't lose my hair. The area where the beams are hitting will become like a good sunburn. It can be eased with acupuncture and massaging in lotion. I'll get a little tired at the end of the day, probably going to bed a little early. Maybe in weeks 5-6 I will get a little more tired than usual since it is cumulative. The Radiation Oncologist said that your tiredness is a lot like how you feel after a really long day at the beach. If only I was going to the beach for six weeks...mmmmmm.

The appointments are short, about 20 minutes with getting there changing, going in, having them line up my tattoos, shooting the radiation, coming out, changing again. The actual beam of radiation is only on for about one minute total over a two to three minute time period.

There are 33 treatments: every day, Monday-Friday, five days a week for six and a half weeks. I can skip up to 10 appointments but then they would get tacked on to the end of the schedule. This week they are all at 4:50pm, but starting next week they will all be at 8am. One treatment down today, 32 more to go.

Lisa continues to go to appointments with me. She's going to my second treatment tomorrow but after that I should be good to go on my own. It's not because I'm tired or anything, but it's just mentally taxing going to the hospital and dealing with all this. How wonderful is she? Today she gave me a box and said. "I got this for you when I knew you'd be doing radiation. It made me think of how you'd rather be anywhere else than here." I love you, Lisa!

Ants in the completely impatient Pants

2009-08-05T19:57:00.000-07:00

I am not a good patient. Yes, that would be Not. I cannot sit still.

However, I am sleeping 10+ hours a night. I take naps all day. I am eating really well. Really well (of course, if you know me.) I am taking mounds of vitamins and supplements that form piles rivaling those at Old Folks Homes. I do little arm exercises. I go for walks. I hang out when I can. Then I nap again. But I am so antsy pantsy it is driving me nuts.

After a day or two the achy swelling in my calves subsided from ... the surgery? medication? ... and they are ready to roll. Vroom vroomvroom vroom vroom VROOM... The totally unsympathetic Legs are saying to the Upper Body, "Whassamatta?? Had a little surgery? Big whoop, a little boo-boo. Let's get this show back on the road. We haven't gone for a run since last week already."

The Upper Body (mostly the right arm and chest), trying not to look wussy or that the chunks removed from it was any big deal, retorts back in a squeaky, cracking voice, "Yeah, sure... we can still keep up, no sweat! Hey, we can now reach up and wash her hair! Full range of motion is returning... even though... mumble mumble... maybe there's still pain... So ok, maybe not running yet, but how about a bike ride, no problem!"

"Yeah!" pipes in the good-working yet not-so-bright Left Arm.

Even the Brain is getting in on it. "Well, when she called the doctor's office today and they said 'NO. NO YOGA YET, JENNY... simmer down,' they did say she could ever so gently ride the stationary bike at the gym (that is, when I desperately asked about going to the gym. And it was phrased more like "Alright, if you absolutely MUST go, then gently...")... and really what's the big difference between a stationary bike and a not so stationary bike, anyway?"

Now the Upper Body was outnumbered on all fronts and with the Brain completely convinced, battle is over, this bike ride was going to happen no matter what. It was 85 degrees! I can't drive on medication! How else can I get to the beach and take a nap? Geez.

Rachel ("Ray-Ray," to me) Solomon is a lonnnnng-time friend from SUNY Purchase where we went to college together. She lives up the street from me with her ridiculously cute family and produced two of my all time favorite offspring-people ever, Milo and Charlie. Rachel has been so amazing, stopping by with bits of yum-yum food (introducing me to Kettle's Tuscan Three Cheese potato chips ...love...at...first...bite... hold on a sec, I need to go finish that bag right now...) and love and Milo & Charlie hugs; she checks in on me. She perked right up like a watch dog when she overheard my Mouth speaking for 4/5ths of my Body saying kind of off the cuff that we might ride the bike out to the beach. "Whoa, whoa, whoa, wait a minute... is that a good idea, JJ?" and I guess it sounded even less like one when I told her about the doctor's office telling me to reign it in. I promised her I would try not to go. 'Try' being the operative word.

When she texted me a couple hours later about possibly stopping by and checking in again, I was totally busted. "Uh-oh. @ the beach," I had to text back. But I did have an absolutely glorious nap in the sun by the salt water during high tide and a great sailboat race going on...

So today, with my arm tingling and the armpit swelling with some fluid, one could think that maybe Monday's two-mile bike ride -- on an almost 100% flat terrained bike trail, and peddling as carefully and daintily as a shy turtle desperately trying not to draw attention to itself -- I mean broken ducks could have passed me -- maybe was too much. Maybe. My Brain most definitely refuses to see the connection or accept any such responsibility. The Left Arm is just out to lunch reading comics, taking a snooze from all the extra work it's not used to. And the Legs are so unbelievably thankful that they got any kind of exercise at all (I could feel the medication moving out of them afterward, it felt soooo good) that they refuse to have any part of this armpit "Conspiracy Theory" (their words.)

I have the snakey vertical cut on my right breast where they took out the tumor, and another incision in my armpit where they removed two lymph nodes to test and see if the breast cancer had spread to them (and my whole system), a procedure called a Sentinal Node Biopsy. I heard on Monday that the second and more comprehensive test came back on the lymph nodes and they are negative (clear of cancer) and because of this I won't need chemo! Big whoopin' YEY!! for that! It's that armpit incision where the swelling is. Nothing is red though which is a good sign there isn't infection.

Ultraconcerned after learning about the ride, Rachel stopped by the next day with a "Whoaaaa Nellie, Take It Down a Notch" care package. She packed up about seven of her best DVDs, involving Strangers With Candy (to fight my Amy Sedaris withdrawl), Will Farrell, David Bowie, and bunch of other great stuff; magazines featuring, of course, more Amy Sedaris, Flight of the Conchords, and essays on spiritual enlightenment and philosophy. Great mix of visuals and verbiage, covering all comedy and existential topics (are they really so separate anyway?) And let's not forget the T3C chips* and a gluten-free brownie that would actually knock your wheat-allergy socks off. Rachel gave me the same "simmer down" talk that the doctor's office did and threatened to call every two hours to find out my whereabouts. She would put one of those home-monitoring ankle bracelets on me if she could.

After the bike ride I hurt my (already hurting) arm getting the backpack off. That induced my first true "I Hate Cancer" meltdown and cried -- bawled -- and yelled -- for over two hours straight. I had read about this, that it's not the breast cancer that makes you feel like crap, it's the treatment that does. The stuff that makes you feel better makes you feel like doo-doo for the first time. I've been trying to be so positive throughout this whole thing, cracking under reality was bound to happen sometime. I've cried and been depressed, but this was blow-out. Normal, I know. I really don't want to portray myself as some Suzy Sunshine, I wasn't totally surprised by it. I woke up Tuesday puffy from percocet and the massive eye-ball beating.

Adam and Dale gave me this awesome shirt they found at a grocery store in the middle-of-nowhere Missouri. Adam asked if they should go in, and Dale's spidey t-shirt senses were tingling in the parking lot: "I think we're going to find some good t-shirts in there..." Oh yeah, bingo.

As for the fluid puffing my armpit. Try this at home: take a hard boiled egg. Lift your right arm up. Place egg in armpit. Put arm down and squeeze elbow to ribcage. If the egg didn't crush and if you kept squeezing and the egg really, really hurt you, that is the sensation and pain I'm having right now. Oh, and add in some tingling down to the wrist and numbness in the arm. If I didn't have this painful fluid I would feel pretty darn amazing (in context) actually.

That tingling and numbness is why I initially called the Doctor on Monday. The nurse explained this is normal. "That actually comes mostly from, well... how do put this... from having your arms, well, tied down. Like Jesus. On the cross." Well, if that sure doesn't give you a super clear visual, let me show you what she's talking about. Here's a photo they took of me during surgery (I added skiers on the bunny slopes to make this family-friendly). I know, not my prettiest moment in life:

Is that a man or a woman? I dunno... I could tell better if it weren't for those skiers...maybe...

Yup. That position right there. Having your arms strapped down in that horribly twisted position for hours, is why people have to go to physical therapy. It causes extreme pain, tingling and numbness, all of which I am still feeling. The physical therapy is because frequently people can't lift their arms past shoulder height after this. But my range of motion is really good now, I can swing my whole arm (gently... gently, Jenny...) in all directions. I do little exercises.** I wish I could go swimming and that part KILLS me. (I can't because of risk of infection.)

Which is why the fluid is here. My theory is that it's God's way on jumping on the Cool Yer Jets bandwagon. Its called "Seroma" (fluid back-up) and it is when the lymph nodes that are used to draining fluid no longer know what to do with it after some are removed. This is more common with mastectomies, which is why you get sent home with drains put in your side. The nurse on the phone said it is less common with lumpectomies, but not rare. I'm convinced this is the Universe's way of making sure I don't over do it. Because clearly without the seroma I was ready to start moving around too much before I should. So now not only does everything hurt more, I'm mega tired and I feel like a sore throat is coming on. Nice work, Seroma! We got her back on the couch watching movies and napping every two hours again!

Tomorrow I go to Dr. Clarfeld for follow-up to my surgery and he'll also drain the fluid. The nurse said they keep doing that till the lymph nodes figure things out. Today my oh-so beloved friend Ben Morgan -- a massage therapist -- came by on the way to his friend's show in Seattle and showed me how to massage my lymph system and get the fluid moving. I have yet to try this invaluable technique as I have been sitting here ever since typing this blog, which also hurts my armpit. I know, I know! I am getting off and going to bed now.

One last thing. When I came to after the operation in incoherent delirium, I mentioned probably three times to Dr. Clarfeld that I wanted a milkshake. When I was more aware and wheeled back to Recovery, there were Julie and Rob, with a milkshake.

I learned later that while I was still conked out, Dr. Clarfeld went to the waiting room and told Julie and Rob how the surgery went. They heard the good news and then said they were going to the cafeteria while I sobered up. That's when Dr. Clarfeld came back to me and I started muttering "I want a milkshake." He, the surgeon, then went all the way, floors down to the cafeteria, sought out and found my sister and Rob, and told them I was awake and needed a milkshake. The surgeon personally did that. He didn't send his nurse or anyone else, he did that. I will love this man till the day I die.

Day Two of 100+ deg heat. I couldn't have food or drink for eight hours before the operation (11pm the night before). So even though I woke up at 4am on day-whatever of our heat wave, I was not allowed to have even a stinkin' sip of water. Here I am at 1:30pm the next day with my glorious milkshake, best one in my whole life.

* I was filling in more info to Lisa about Kettle's Tuscan 3-Cheese chips, and she says, "Hey have you been to their website? It describes them as "A Mediterranean vacation in a bag. LET’S RUN AWAY TOGETHER." Oh yes, between the percoset and the potato chips I can hardly tell I'm on a couch in Ballard...

** Here are the exercises:
http://medicalcenter.osu.edu/PatientEd/Materials/PDFDocs/exer-reh/up per/ad-lump-mast.pdf

Home again, home again, jiggity jog

2009-07-30T14:07:00.000-07:00

FYI
Everything seems to be a-ok, just got home! Super high on percocet right now. Some pain, going to bed. I have a big vertical "S" shape cut that at last minute replaced a horizontal eye-shaped cut (surgeon called it serpentine shaped). This kept the nipple more aligned with its buddy but will have more noticeable scar, which is fine with me. I'd rather be more symmetrical then worry about what silly scar shows in a bathing suit. This is why I picked this surgeon, he's works super closely (and is BFF) with the plastic surgeon, and he's the one who suggested the "S". Dynamic duo, those two. Also, when I came to I told him I wanted a milkshake and he made sure that message got to Julie and Rob and sure enough I got one STAT when I went to Recovery. The other reason why I picked Dr. Clarfeld. I love him.

I asked them to take photos of me during surgery (they're used to my camera by now,) I may post them, can't wait to check them out.

Ok, have to go fall on my face right now. Actually -- fall on my left side. Not allowed to sleep on my right or on stomach for a couple of weeks. Lying in bed, watching the temperature rise (the house's not mine...). Supposed to be 100 deg today. Holy smokes.

Thank you for all of the love and support. I just kept thinking of all the people that have been helping me and sending good wishes and prayers and it totally got me through today.

I love you all!
XOXOXOX

Farewell symmetricalness! It was a great run.

2009-07-29T16:11:00.000-07:00

103 degrees today. One-oh-three. Record-shattering temperatures. 103 would feel like 120 degrees for the rest of the country only because just like when it snows, Seattle is completely ill-equipped to handle this heat. We're having a heat wave, but we're also on a 3-month drought, breaking records from the late 1800's. This morning on KEXP two djs were talking about why it's not actually that hot when you compare this to the midwest or other places with hot summers, but again, it's because this city is not built for heat. John Richards said, "I don't even own a fan!" and Kevin Cole rebutted, "I don't even own shorts!" Forget air conditioning, no one has it and they've even designated public libraries as cool-safety-spots.

Everyone is asking how I feel about tomorrow's surgery. Besides that I cannot wait for this to finally be getting-it-on, the forecast for tomorrow is 100 degrees I am looking at this as 8-hours of crankin' hospital AC bliss. It's 91 outside as I write this at 10:30pm, and the inside of my house is finally cooling down to a balmy 87. I can't WAIT to be in that hospital tomorrow.

So, I thought this would be a great day to go for a run. Something has happened to my brain since having to focus on Lump. It's like I cannot handle any other brain activity. Bad decisions are made. Things get lost. Cell phones get dropped. Daily. (Ok, that has always happened to me I confess, but the frequency is definitely on the rise...) Last week before Sarah's wedding I showed up a day late for my hair appointment (but at the correct hour! I haven't totally lost it!) I saw this sign on a light pole around the corner from my house. I could completely relate. I feel I'm coming dangerously close to being in this person's shoes:

I had dinner Monday night with my friend Dr. Sanders who was giving me all kinds of medical and emotional advice. He told me he was taking me out to boost me up for the surgery and emphasized how important it is to eat like crazy before an operation. Why?, I asked. It gives you energy to fight the stress on the body, fills up your fat reserves, gets you through the long haul. "Imagine going in there all depleted?" Right. You don't have to tell me twice. I ate almost an entire giant eggplant stuffed with fava beans, pinenuts, and rabbit. And I have been on a eating spree since. (When the heat isn't suppressing a singular desire for only cold yogurt and blueberries.) With all this feeding, I woke up this morning craving a run. I haven't had time in the past few days nor has the heat been particularly inspiring. But this is it. I'm not sure how long it will be before they'll let me run again, so I felt I had to go.

Here are a few of the bad decisions. That I decided to go on a run in the first place. That I picked my 7-mile route instead of a shorter one. That it goes inland, instead of out along Puget Sound where it is far cooler from the cold salt water. And oh yeah, that of all the days before this one, today was going to break 100. (Good decision: I brought a water bottle for maybe the first time in my life.)

Half-way through the run I started recalling Sanders, "Imagine going in there all depleted?" Oops. That may be the very thing I was doing. At one point in the full sun I had sweat pouring off my elbows, like a gutter. The bandana on my head was doing nothing with perspiration control, it was so soaked I could have washed a car with it. I finally set up a system telling myself to run where there was sun and walk when there was shade. So now I know, that for a tree-hugging city, Seattle has surprisingly not so many trees. When sun comes, we want it. Well, we asked for it and are sure getting it in spades this year. I clung to shadows like a cat walking the perimeter of a lawn. I also realized how hilly my run is. So, even more than a run/walk, it was more like a run/mosey. And the whole time I was nervous I was jacking up my surgery tomorrow. I just. Wanted. To get. Home.

I did, but my normally 1 hour 15 min run went 40 minutes longer than usual -- which under normal conditions I could have run another 4 miles in that time. After grubbing around looking for these hydration tablets I bought on a whim once, I drank 64 oz of water with like 4 of those tablets fizzing away. Then kerplunked into an ice-cold bath. I swear you could hear sizzle and see steam. I submerged my head and turned off the icy faucet with my toe while still underwater. I didn't want to come up. My fingers were fingerling potato swollen. I get why they are named that. My face like a beet. My face turns red when I run in the winter, in the rain. I'd passed a guy struggling with energy to mow his lawn, but he took a long look at me and reached for his cell phone by instinct, I know he was contemplating calling 911 for a young woman having a heart attack from running like an idiot in the mid-day sun.

But other than that little self-imposed stupidness, I feel great. I've been spending the last two weeks getting ready for tomorrow. Making follow-up appointments. Deep cleaning. Paying bills, balancing checkbook. Doing yard work between heat spells. Replacing gunky 4-year-old makeup so I can try to pretend I look ok on pain medication. Food shopping. Laundry. Finding housemates for downstairs. Exercise. But not a lot of sleep.

Last night my amazing friend Monika came over. She works in HR for the King County Public Library system and deals with health insurance every day. We went through mounds of overwhelming (to me) paperwork, matching up statements with bills, checking all the charges, red-flagging weirdness. We got piles sorted out and organized into a thick 3-ring binder. She also told me to not open or pay any bills for the next two weeks. Just stick them all in an envelope and she'll come over and we'll go through all of them together. I can sleep tonight just knowing that is finally under control, I can't even describe the relief. She's Polish and speaks English fluently as a second language. She also speaks fluent Health Insurance and I will be forever indebted to her.

I have to get up at 4am. I need to check in at Overlake Hospital at 5:30 and go to the Nuclear Medicine Department to get some radioactive goo shot into my right boob which will be carried up into my armpit by lymphnodes so they can test them for cancer too. They cut into your armpit during the lumpectomy to do that. It's called a Sentinal Node Biopsy. After that I head down to surgery and let the lumpectomy begin! They also do a couple of other tests to see if the cancer has left the breast and invaded your system (so I will know about chemo after this.) It is supposed to be 1 1/2 -2 hours of operating and then I'm not clear how long I stay there. I think a few hours. It will be outpatient surgery and I will be kicked out of AC Eden at some point tomorrow.

Last night I went to bed with total delight. I had all the lights off, crawled in to read for a few minutes, clicked on the light and saw a ladybug on the wall next to my good-luck charms! Extra extra good stuff! There's two little figurines given to me by the wonderful Txell (pron, "Che") who was given them to her for a surgery she had this year. One of them is this flat, polished, carved, white stone in the shape of a female body. I press her right breast with my index finger every night for good luck.

The third object I have was given to me by my little 9-year-old friend, Ophelia. One day April pulled up in her mini-van as I was walking down the street and she yelled out the window, "Jenny! Ophelia has something she'd like to give you!" It was a fresh four-leafed clover. "Ophelia finds them all the time and she said to me, 'You know Mommy, Jenny needs this one a lot more than I do.' " I am not sure what is more astounding, the fairly deep understanding that little Ophelia has for a very adult situation... or the fact that she finds these four-leafed clovers all the time. I am SO jealous! I'm always on the look out for them and never find any. I pressed it between tracing paper and it joined the figurines. And last night the ladybug flew in for the party. Tomorrow my chest will be forever altered, but I know I am going to be ok.

Kind Hearted Women

2009-07-22T22:19:00.000-07:00

In 1994 my friend Mary and I went to see Michelle Shocked at a great show at the Showbox. At the time she was touring for two years with Fiachna O'Braonain and Peter O'Toole of Hothouse Flowers and was promoting her album Kind Hearted Woman after her break with her label and was out on her own trying to sell her music. The cover had a chalk drawing of a smiling cat with a heart on its chest.

It was one of those shows where someone is on stage introducing a song and is doot-doot-doodling little notes on her guitar while telling a little story or explanation and before you know it they've said something that somehow ends up lasting with you forever. Michelle was explaining the name of her album and the meaning of the image on it. The liner notes on the album speak a little bit about the content of her stage-story, which was far more in-depth and meaningful:

"About the smiling cat: Back in the days when hobos used to ride the rails they had a vocabulary of symbols that let each other know what to expect when they came to a strange town. For example, ? [circle with crooked arrow through it ] meant a 'squat' or abandoned building. A cat with a smile and a heart chalked on a fencepost or pavement meant in that house lived a kind hearted woman who might offer a warm meal, an odd job, a place to sleep for the night. You get the idea."

Her stage-story went on about other symbols that were used and I was utterly fascinated with this concept. Coming from a graphic design background I guess it's not so surprising. But I love the idea of how much can be communicated in this underground language, and how much it was used to help each other out. And that there's a special one... for kind hearted women. By the way, what happened to hobos? I LOVE the word 'hobo.' Hobo. Hobo. Do we just call them MethHeads now? We need to bring back Hobo.

I am not superstitious but I do live my daily life looking for signs. Everything is a sign to me. I read everything as a communication from a different consciousness that I wish I could speak. This is one of my more super extreme (and obvious) sign examples, but almost exactly 10 years ago in August of 1999 I set out to ride my bicycle by myself across Sweden from Gothenborg to Stockholm along the Göta Canal. It's actually not as far as it sounds. Unless you realize your arm is paralyzed by carpal tunnel half way there.

I had taken a three-month-leave from my job where I was completely losing my mind, only to have work strike me down in my precious prime six thousand miles away: all of my gabillion hours on the computer had caught up with me and riding the bike put some carpal nightmare into overdrive up my arm. I couldn't hold a pen to write or even hook my bra strap together behind my back by the time I got to Mariestad, a tiny city of on the edge of Lake Vänern. I decided to go to the doctor the next day.

I walked around town that night and realllllllly felt sorry for myself and sad. Poor, poor Jenny. All the way out here and work still plaguing me like Mike Meyers (the one from Halloween, not Austin Powers.) I was full of indecision: do I turn back and make my arm stop tingling, or do I complete my goal and keep going, possibly finishing with some sort of nerve disorder?

The sun was setting and the sky was the most beautiful rose pink I have ever seen. The sidewalks were bustling with tourists and families buying ice cream, everyone laughing and chatting in that beautiful language, a couple of delightfully excited children squealed by me full of glee. I looked up and saw the main church and its steeple covered in construction scaffolding with dozens -- maybe hundreds -- of birds quietly perched asleep on every bar or plank they could find up there, all of it silhouetted in dark grey like a paper cut out. I was elated. My heart soared and I looked at the tower knowing, just knowing it was a sign. I said to myself, "Ok. This tower, this moment, is somehow going to let me know what to do."

And as if God himself snapped his fingers and yelled, "Fly!" one second after my thought, 400 birds took off at once, squawking and flapping wings -- it was like The Birds. It was one of those moments that lasted five seconds but seemed like a lifetime in slowmotion. I remember it felt as if way too much time passed for my brain to compute that part of the thunderous, rain-like noise was, in fact, 400 birds releasing poop-bombs upon flight, and I, for some reason (oh there's a reason, yes, it's called a sign) was the only one on that sidewalk completely covered in bird crap after the flapping mayhem subsided, with a bunch of clean Swedes staring at me.

(Despite the unfavorableness of this Sign, I did end up biking one more day to Lake Vättern in the middle of the country, even after the doctor answered my barrage of questions with, "Ok. How many times do I say this? It's a called a repetitive motion disorder, Yenny. Yes, you need to stop repeating whatever motion it is that is hurting you." Finally heeding the Sign and having reached the second lake, I then put my bike on a train and headed back.)

So when word got around that this stupid lump was nuzzling with me, Mary, my awesome dear Seattle friend who broke my heart to pieces when she moved down to Portland years ago, sent me a card asap with a great Mary letter -- and also this peculiar circular paper folded up in a half-moon shape stuck in the envelope with no explanation.

It was this terrific drawing her 5-year-old son made of a dinosaur and then carefully cut out red construction paper and superimposed on top of the reptile one of those "No" symbols of a circle with a line through it. Oh yeah. This was fantastic. This had all the makings of really powerful symbolism. I was living down the street at the time in my own place and I taped this to the front door. I felt the house immediately transformed. Like, no way is more bad luck coming this way ...or some sort of vibe of protection... I dunno, protection from this cancer somehow. My Hobo Symbol. It made it through my move back to my real house and is up on the door here now, continuing its job.

Erin Keeley, yet another fabulously talented and hilarious and beautiful friend of mine, came to my rescue to help me move. (You know, I have breast cancer and yet somehow stupidly forget to ask for help from time to time... oops.) We were talking about my crazy year and all that's been going on and during one of our trips to pack the car she asked about Dino on the Door.

After my explanation of Mary and the card and my feelings about how it makes me feel, she looks at it and says, "Yeah right. I mean the last thing you need right now is a bunch of dinosaurs." I absolutely adore how my friends just get it.

Crawling Out of the Information Quagmire

2009-07-13T21:51:00.000-07:00

WHEW. That was a crazy long bit of too much. I've moved back to my house, I'm still unpacking, our Argentinian, long-time friend Alejandro Gee has moved in as a roommate upstairs (into what Hogarth calls "The Tango Palace"), and John & Amity our best friends downstairs have bought a house and are moving (sniff... sniff...sniffsniffsnifffffffff) the beginning of August so we are on the search for new tenants. And I've been to another billion appointments and struggling with: which surgery and which surgeon to pick. And I have. YEY.

Please don't get me wrong: I know I am SO lucky to have options. But I never envisioned my process being this way. And I did not foresee how unbelievably stressful this decision would be (and still is). I am not comfortable deciding the fate of my body. Which doesn't make sense because isn't that the ultimate luxury in medicine, to make your own choices?

I originally went to Surgeon #1 and thought I'd leave that meeting with her telling me exactly what my surgery would be. Wooo-weeee, was I ever wrong. Instead I left there totally exhausted and confused after she said I could pick what I wanted to do (again: this is GOOD!). Surgeon #2 (at a completely different hospital system) said the same. #3 said he would definitely NOT do a mastectomy because of the lump's closeness to my pectoral muscle, he felt he could not get good enough "margins" (they want to cut a minimum distance away from the tumor to ensure they got a good clearance of the cancer cells) and he would not cut into the muscle. Therefore I would need to do lumpectomy with radiation because with mastectomy I most likely wouldn't get radiation and therefore there would be too much risk of cancer cells left behind near the muscle. So I was set on lumpectomy for sure. I went back to surgeon #1 and she concurred. Deep breath...

...Then I saw a plastic surgeon to see what he thought. He told me to choose #2 as my surgeon since I liked him best and then he went through all the reasons why a mastectomy could have better cosmetic results for me so I could be aware. And -- oh great, yet another option! -- I could start with a lumpectomy, see how it turns out, and if it's terrible aesthetic results, go back in for a second surgery and get a mastectomy.

Now I have no idea what to do except... I know I want Surgeon #2. I went back to #2 and he said he would cut into the muscle and it wouldn't be a big deal, thereby putting mastectomy back out as an option. In the end he told me to go see a counselor about trying to pick which surgery, since all surgeries will cure the oncological problem. The rest was aesthetics, process, and lifestyle decisions that I need to make... and only me. I did see a counselor. But actually what really helped was meeting a radiation oncologist who was so completely fabulous. She reinforced my feeling that I should do what the plastic surgeon said: start with the lumpectomy and see how it goes from there.

Somewhere around seeing that plastic surgeon is when serious headaches started disabling me and I began having really big problems with words. Like "please shut down the rainbow" means "could you lower the volume on the radio, please." Names of people -- HA! Unless you're a doctor I forget them. I don't care I've known you forever and you're my sister, you're still sometimes What'sHerFace. And a really weird side effect: I cannot remember how to efficiently drive from point A to B anywhere around Seattle. My mind-maps are blown to bits. And I stare off in space with exhaustion. Please wipe up my drool if you see any. Ever try to learn another language in a crash-course, immersion kind of way? It's a lot like that.

And I am HEALTHY. I do not understand what people do when they don't feel well and have to do hospital things. This is why I pray to the Great Chemo Gods that I won't have to go through that. I am terrified of chemo. I digress. As I was saying, this is all just mental and emotional exhaustion. No meds yet, no nothing. Just a severe case of being super overwhelmed with information and indecision.

Lumpectomy vs. Mastectomy
So here was the problem. Appointment after appointment, tons of reading material, talking with breast cancer survivors... all of this information kept getting revealed and I still never liked the choices. They all sucked. But which sucks the least? Who knows. Breast cancer is different for every woman so it's hard to know who's profile you match the closest too. In the end it's really your own personal decision (when you have choices...). These were my options.

Lumpectomy (this is verrrrry basic):
-Tumor is removed but because of the breast tissue left behind you HAVE to do radiation to make sure you kill off cancer cells left in the tissue
-Radiation treatments for me would be Mon-Fri everyday for 6 1/2 weeks (10 minute appointments but a 20-minute drive each way.)
-Because you are basically getting burned, radiation toughens up the skin and tissue making it almost impossible to get reconstructive surgery (picture bacon, but this happens microscopically)
-You have a slightly higher rate of breast cancer returning because there is breast tissue left behind
-There is a 1-3% chance that sometime later in life you could develop a totally different type of cancer from the radiation -- and these are usually not curable cancers
-Radiation can hit and damage other parts of your chest cavity, heart and lungs
-Sometimes your breast can shrink a full size (Hello! I'm already A-ish...)
-Where my tumor is and the skin that will be removed could make one nipple higher than the other, mmmhhmm... lopsided
-Where the tumor was removed it could look like a big chunk is missing. Up to 30% of my breast could be removed, and I might be deformed, certainly no longer symmetrical. I might tell people I wrestle alligators for a living.
-Or everything could look great. That's the problem with this, you just don't know the visual outcome, till the outcome
-BUT... I would still have MY breast and it would have sensation and continue to live and be a body part
-I keep forgetting to ask if I can get a tattoo where the skin has been radiated. Something is definitely going there when this is over...

Mastectomy (again, super basic, broad statements):
-Remove all breast tissue
-Depending on the tumor location, this usually means the nipple is removed as well
-Later, with WAY-better-than-Frankenstein reconstructive surgery, a fake nipple is made and tattooed on
-GOOD: I most likely would not have to do radiation (since lump and all tissue have been removed)
-SO, you can get great reconstructive surgery. But it is not like a regular boob-job. Those the implants go under breast tissue and muscle and there is still sensation. With a mastectomy it's just implant and then skin. My friend's mom said her implants are "lumpy, a little mushy."
-There is little to no sensation in the entire mastectomy area, which can also continue up into the armpit. It feels numb.
-My other breast would get a normal boob-job implant to match
-I'd have the mastectomy surgery, then two months later they put in these bags that stretch out the skin, then two months after that they put the final implants in (some plastic surgeons put those stretchers in at the time of mastectomy surgery; mine won't because he doesn't like the risk of infection). A six month dealio.
-Also GOOD: it would decrease the chance of breast cancer returning some (since there isn't tissue for it to return to)

This is like 6 weeks of information and opinions about my particular lump boiled down to some basics that leaves out a whole lot, but you get the gist. It seems so odd that all of the doctors are so brilliant and yet all have slightly different opinions and takes on information. (Like the radiation oncologist doesn't think my breast will shrink that much.)

Halfway through I took the option of double-mastectomy totally off the table. I'm only going to deal with the one breast with problems at this time. The other one right now is healthy and I'll just go with that. Also, a 4th option was thrown into the mix. Because of my tumor location it is possible to do a nipple-sparing mastectomy. They leave your nipple but remove everything else. Again, breast cancer reoccurance is slightly higher because a nipple is breast tissue and you are leaving it behind. The nipple is dead though. It does not react to anything like temperature and it too is completely numb like the rest of the breast. And it might not take after the surgery and could die off. However, I liked this psychological option as I was COMPLETELY freaked out about losing it entirely.

For some people there might be factors that guide them clearly in one direction or the other. I'm in the group of the clearly undecided. My strategy for a long time was that as long as I didn't decide, then there wasn't a decision, and therefore no surgery could be scheduled, and this all wouldn't be happening. Lalalalalalalaalalalalllaaaaaaa. (I'm learning the true meaning of denial.) Well, the clock is certainly nipping that theory in the bud.

This is where Super Lisa comes in. Whenever I see a picture of Lisa I see an imaginary caption underneath that quotes what Rob once said, "Lisa might be the smartest person we know." And Dr. Rob Crampton, PhD has a lot of smart people in his life. I know, right? -- Wouldn't you bring her along too??? Well, that's a good enough resume for me, and poor, poor Lisa got recruited into my world of nuttiness. She met my oncologist, plastic surgeon, surgeon #2, and the radiation oncologist. She also got in on the film-losing-escapade. One day she said, "I don't know how you aren't all googly-eyed at the end of these days" ...since she was all googly-eyed too. Oh, which I am by the way (see drool comment above). You can't help it.

This is how awesome Lisa is with helping me sort out all this information. Every time I drop her off from one of these insane appointments we decompress all our new facts. Somewhere along the line she decided we needed a decision tree before our heads popped off. Look what she made me. This isn't finished, it is in Phase 1 of production:

She also typed up the notes she took at our appointments. Have I mentioned enough that I have the most amazing friends? I am one lucky dog. Here is Lisa. She's super beautiful (and single too. All my single girlfriends get a free promotion when starring on this site.) We had a great time doing a jigsaw puzzle waiting for one of my always-seem-to-be-delayed appointments. Note to hospitals: I would have happily waited hours for the appointment with that puzzle. In fact, it was hard to pry us away once Lisa found the LAST edge piece. Yes!

Lisa, possibly the smartest person we know

Soooooo.... Surgery D-Day is Thursday, July 30th. Julie What'sHerFace, my sister, is coming up from Portland to stay with me and take me to Overlake Hospital. They'll cut out the lump and send it out for tests. They'll test all six sides of it and make sure there are enough healthy cells surrounding all of it (those pesky "margins.") If they cleared the margins enough, then I'm done for now. If not, I need to go back in a week later and either get more breast removed, or just go for the whole enchilada mastectomy thing.

If the lump tests ok, then I go to the plastic surgeon. Using a needle he will aspirate the fluid that fills up the lump's hole. (The fluid is the body's way of trying to heal and makes everything look puffy and nice post-surgery -- but it will get zapped away with the radiation. Kind of like when you see a souffle in the oven and then it totally collapses later on.) With the fluid gone, we can better see what my breast will look like after radiation treatment. At this point (ok, check the Decision Tree now) I can decide if it looks good to me and 3-4 weeks later start radiation ... OR if I feel like a deformed freak, I'll skip the radiation and sign up for a nipple-sparing mastectomy so I have a shot at reconstruction.

Basically we know all that we are going to know until after surgery. During surgery they put a blue dye or some radioactive gunk in your breast and it sends it up into your armpit and shows the surgeon where your lymphnodes are. He cuts into your armpit and removes some of these nodes. This is the Sentinal Node Biopsy. They test them right then and there. If they are positive, then they go for removing more nodes. If negative, then it looks like the cancer is pretty local in your breast. But they get sent out for further, better tests as well.

At surgery is also when they can tell what stage your cancer is officially at. They also can tell if there are tentacles to your tumor and if they are spreading beyond the breast. They also do another test that I forget the name of. That's for the oncologist, so they'll know better what your deal is as far as the cancer being in your system or just localized. So, it's not until after surgery that I'll know if I need chemotherapy or not.

But we're not going to talk about that, because I am not going to have that, in my mind. But if it happens, I'll have a lot to deal with then, but right now I have other things to worry about, I'm not putting my energy into the possibility of chemo. Like, I'm not sure what shoes I'm wearing to my friend Sarah's wedding on the 25th. (Can't wait, can't wait, can't wait for that!)

My lump is slow growing, non-aggressive, well-behaving (if there is such a thing) cancer. Most women my age have cancers that are akin to a Bonnie & Clyde rampage, shootin up the country-side, robbing banks, spraying bullets, balls-out, taking no mercy. My cancer appears to be like the 70-year old woman fed up with her nasty husband and sprinkles arsenic every night on his meatloaf. So, chemo is hopefully unlikely, but not ruled out... till after surgery. I'm so sick of hearing with everything, "We'll know better after the surgery..." Aye yi yi...

All I know is that I will sleep better after this surgery... oh wait, that's right! For two weeks you can't sleep on that side of your body and it's really painful. Will someone tell me what's the good part of having (early-detected) breast cancer? Oh yeah... you get to live. Alrighty, I'll take it. YEY!

Forever Young

2009-07-01T23:47:00.000-07:00

Yesterday was my birthday. This spring I was realllllly dreading it. 38, okay. Turning 39 -- seems so much... closer to ... 40. And when you feel like you're 28, how does this math compute? But there is nothing like having breast cancer at 39 that makes you feel super duper, like, totally young. I don't know where I've been in breast cancer education, but I had no idea that it was something you usually get after 50. And I did not know that usually when you have it at a young age, it's not pretty. It's probably very aggressive and rampant. This is one time I do not mind being a freak.

I love it every time a doctor or someone says, "You're sooooo young to have breast cancer..." I've never had so old a birthday and think it is so young! And, as one doctor told me, every birthday from here on out will all the more special.

So this is how it went: found lump myself, saw primary care Dr. Woo the next day, got signed up for a mammogram two weeks later at Ballard Swedish Hospital on Friday May 29. Mammogram actually came back normal, but there was obviously a lump there, so they went on and did an ultrasound. The lump showed up on that imaging. Now they had to determine if it was benign or cancerous. To do that they sent me to the other side of town to Cherry Hill Swedish that same day for a biopsy. My biopsy was ultrasound guided, meaning they used that to see where to stick the needle in (your lump area is locally anesthetized). They stick that in and pull out core samples of the lump that get sent to a lab to see if it is cancerous. The doctor had a hard time getting those because my lump kept moving around.

The results came back much quicker then they said they would -- Monday afternoon, June 1st. That's when I got the lovely phone call with the fabulous news. One of the only things the nurse could tell me from the biopsy about this new cancer stuff in me was that the lump had scored a 3 out of 9 on the Bloom-Richardson test. They grade it in three categories, so the lowest you can possibly get is a 3. These categories grade the tumor: things like its shape, aggressiveness, how much the cancer cells look like their counterpart normal cells, etc.

One surgeon told me that usually when women as young as me come in they almost always score a 9 out of 9. And of all her patients, she usually only sees one to two 3's walk through the door a year. So, in a way it seems I have the hormones more like a 70-year-old. I am, as another surgeon said, "really, really strange..." I will most gladly take strange, thank you very much.

I mention all of this because I've had shared with me quite often the very, very kind words of people's experiences that, for example, their mom had breast cancer and all they did was remove the lump and she was good to go, so don't worry about it, you'll be fine, no big whoop. This can be many (older) women's experiences, thank goodness. And while my inner 70-year-old and I may actually be a little similar in their lower-impact experience, most young women with breast cancer are not facing a simple journey. The 9 out of 9 is not a place I'd want to be. I would like to share this as I had no idea either, that while it is less common to get breast cancer younger, it is usually a much more aggressive and potentially very devastating cancer. Thought I'd throw that out there.

So, as my birthday wrapped up the first 30 days of this lump that's change my life, I still haven't had much time to reflect. It has been CRAZY. No one tells you that for the first month or so, your life is going to be completely insane. A million doctor appointments, that run into other appointments, meeting surgeons, 2nd opinions, 3rd opinions, oncologist, radiation oncologists, radiologist, genetic counselor, social worker, plastic surgeon, lab work, tests, blood drawn, MRI, nutrition counseling, mental counseling, 4,000 new cancer-related vocab words and test name acronyms, lost films, information total overload. Not to mention if you've been given options for surgery (how super great!) like me... you have to make some really major decisions. Soon. (And then there's the rest of your life that you hate to put on hold. Did I mention I ran a half-marathon last weekend and moved? Help me.)

I look back at my notebook and see all these things I wrote down June 3rd, when my naturopath gave me the 2-hour lowdown of what the process was going to be -- and how now I understand all that was once jibberish. No one tells you that your cancer is going to be a FULL-TIME job the first month, and really, good luck trying to work. And if someone told you what it will be like, you won't believe them anyway.

I hardly remember last week. I had so many appointments and I was trying to fit in work here and there. One day I said, "Tomorrow I will definitely be in for two hours," thinking this was an entirely attainable goal. Nope. At 3pm when I was finished with my second half-a-day appointment, I needed to get my films to bring with me for when I see the to second-opinion surgeon. Apparently no one could find them, and I spent the next two hours trying to track them down. It's like dealing with the government. So much for going back to work. And so much for not being exhausted. (Note: one thing I have learned -- keep your films in your possession at all times. Never give them to nobody, no matter how nice, trustworthy, organized, or official they may look. Nobody.)

The next day I had to use my lunch hour to pick up the copy of my mammogram that they were reprinting back in Ballard... because they still could not locate my films. It wasn't ready when they said it would be, so I decided to run over to this tiny but awesome take-out place, Green Go Food, while I waited for them. I walked in the door and asked some questions about their yummy yum yum super yummy menu. This little kid off to the side (in fact if you click on the Green go link you can see a picture of him) started showing me his airplane toy. "Oh, cool," I said. "Did you get it on a flight somewhere?" "No, I got it at the airplane store." I decide this kid is a-ok.

I'm bleary-eyed I'm SO insanely exhausted from the week and it's only Wednesday, lunchtime, but I really don't mind his incessant airplane talk. His smooshie-cute parents are in the kitchen, his mom yells, "Cypress. Please let the lady eat her food." The plane flashes red which he insists are the engines blowing up and he has to put them out. Over and over. All these mishaps. "That plane has got a lot problems," I comment. "I know," says Cypress. "It just keeps catching on fire."

I like his exploding plane play. Finally he comes over and climbs up on the stool next to me to show me yet another feature of the plane. Then he says:

Are you my friend Cooper's mom?
No, I am not.
Are you sure?
Yes, I'm sure. I'm not a mom.
Are you a grandmother?
(oh, thanks kid!) Nope. You have to be a mom first before that.
Well, you look like Cooper's mom. You remind me of her.

pause

Why aren't you a mom?

pause
pause
pause

pause
pause

He stares at me with blue eyes and blond hair. I stare back at him with mine. For what feels like 10 minutes. My stomach hurts for a second. Why didn't I tell this kid to scram when I had the chance?

That's a good question. I don't know. It just never happened. I guess I never got around to it.
Why not?
It's ... complicated. But... I would like to be a mom. I'd like to have a nice, fun little boy like you to talk with. This triggers something in him. I think he thought I thought he was a baby.
He jumps up and shows me his fingers. "Hey! I'm FOUR!"
Wow! Does that mean you go to kindergarten next year?
Yup... in the fall... when the leaves drop to the ground. He makes a graceful gesture as he says this, his hands and fingers making slow, tiny movements of leaves falling off trees and landing. Is this kid a mini-poet or what?
And by then...maybe I'll be FIVE! He totally cracks himself up with this and smacks his face with the whole palm of his hand.
When's your birthday? Do you know it?
February 3rd. It always has the same name every year: February 3rd... it never changes. When is your birthday?
Well, hey! My birthday happens to be next Tuesday!
Which Tuesday?
Today's Wednesday. (I count my fingers) Then Thursday, Friday, Saturday, Sunday, Monday...Tuesday. Six days.

His face totally changes with enlightenment.
Heyyyyy. I know. I should get you balloons. And I should make you a cake!
Ohhhhhhhh my gosh. Huh. What a wonderful thought! Thank you for thinking of me!

Dad walks by.
Hey, Dad -- can we get her balloons and make a cake for her birthday Tuesday?

ADULT WORLD ENTERS.
"Ahhhhhhhhhhh... I don't know how we can do that..."
But it's her birthday. Cypress looks back at me incredulously with palms up, face like Johnny Trav in Saturday Night Fever reading, "Wha? Wha's the problem here??"

I decide it's time for me to take off, relieve Cypress's poor dad from signing up to personally cater my birthday, and hope that stupid mammogram film is finally ready. I still can't stop thinking about Cypress though, and how at his age anything really is possible. Cypress thinks it's completely realistic to schedule balloons and a make a cake for a perfect stranger. I swear I will try to think of a few things that could be possible too.

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

2009-06-29T22:00:00.000-07:00

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

2009-06-21T22:13:00.001-07:00

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

2009-06-18T20:16:00.000-07:00

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

2009-06-17T21:51:00.000-07:00

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

2009-06-16T21:33:00.000-07:00

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

2009-06-13T19:57:00.000-07:00

-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.

**************
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!

**************

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!

2009-06-13T19:45:00.000-07:00

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.