Spirit Teams: How to Make the Most Impact with your Pink Out Game

Since I have over twenty years of dance team involvement and expertise under my belt, a sizeable majority of my Facebook friends fit into one or more of the following categories: current and former dancers or cheerleaders, coaches, choreographers, contest judges, spirit coordinators, and employees of the industry that keep the whole world of cheerleading and dance afloat.  As such, my News Feed is always full of photos and updates commemorating tryouts, visits from choreographers, travels abroad to teach or judge, and of course, gameday pictures.  These status updates generally instill me with a treasured connectedness, and I have welcomed this over the last nine months when I often felt disconnected from the dance team world.  Lately, I've seen lots of sideline shots with pink poms and ribbons attached to uniforms along with loads of pink athletic gear, and I feel particularly connected to these images.

You see, after working through Stage IIa breast cancer (with a newborn and a toddler in tow) and later, through a year of treatment for Stage IV breast cancer, I decided to retire at the ripe old age of 41.  Giving my all to my hard-won and much-cherished sales position in the dance team industry and trying to survive a grueling chemotherapy regimen were no longer compatible.  Even as I get longer in the tooth and wider at the waistline, I have continued to think about a way to stay in the dance world's orbit. Why? I recognize this compulsion is purely and embarrassingly selfish; I miss making an impact in the lives of others!

Why are there so many men and women of a certain age who continue to work with cheerleaders and dancers?  We are all chasing the buzz we caught after our very first experience teaching a class.  We miss the power of leading a crowd to fever-pitch fury when the score is tight and the players are growing weary.  We all jones for the payoff from watching a team passionately embody an idea that sprang from our own heads to achieve their own personal success.  We even miss the admonishment to watch how we behave on college campuses, in restaurants, and even in the local mall because someone who once stood in front of us, sweating, vulnerable, and desperate to please, may recognize us and geek out a little.  We are all addicted to the impact we've had on others!  Today, on the 16th day of "Pinktober", I am writing this missive in efforts to mobilize those I've had the honor of impacting in the past, to help impact my life. 

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If your team or your school is participating in Breast Cancer Awareness Month, here is a suggestion for ways to really make a difference with your upcoming Pink Out Game:

When buying pink poms, pink spirit gear, or even shopping around for pink football gear, notice whether or not any proceeds go toward breast cancer research.  If you don't see anything about a portion of sales being donated to the actual cause for which you are raising awareness, reach out to that company and create a dialogue.  Are they doing their part in the fight against the disease, or are they merely enjoying a profit from selling pink gear, emblazoned with slogans they themselves are not actually supporting?  Unfortunately, even the most well-respected purveyors are not donating money to breast cancer research. 

Until they do, consider making your own!  Invite your athletic teams to take a little time out of regularly scheduled practice and have a Pink Party.  Tie-dye some plain athletic gear magenta, fuchsia, and powder pink.  Ask a few parents or teachers to volunteer their time to serve healthful pink pre- or post-workout treats like pink fruit (watermelon, pink grapefruit, and Pink Lady apples) or some DIY pink energy drinks.

You ask, Why not just pay the money for the sharp pink spirit gear and get on with it? There is tremendous educational merit to teaching these young, influential people about conscious commerce. To raise awareness, you need to begin with those that are doing the raising.  Speaking of raising, your team probably raises funds to pay for all their gear, but even if the school pays for the Pink Out, I'm sure the administration will appreciate your conscientious budgeting.

Here's another harsh reality: merely wearing pink at a game does not, in fact, raise breast cancer awareness.  It only serves as a visual indicator to your crowd that something different is going on.  Don't leave your fans hanging: maximize your community impact while you have the chance!

1) Contact your area florist for pricing on corsages or boutonnieres with reasonably-priced pink flowers (carnations, Gerbera daisies, chrysanthemums) to establish the cost of community participation.  See if your florist can give you a volume discount.  Maybe your florist can write off a portion of the expense on his or her taxes as well.

2) For several games prior to the Pink Out, set up a table near the ticket booth or the concession stand and man it with uniformed teammates or parents.  For the cost of the flowers plus money that will be donated to a named breast cancer research organization, invite your fans to acknowledge people who are involved in the fight against breast cancer.  Participants need to provide the person's name, how they are involved, and contact information (phone number and/or email) for this person as well as the cost you've calculated to cover the flowers and the donation.  You can include people who have completed treatment, people who are still in treatment, and people who have succumbed to breast cancer; in the case of the latter, also ask for the name and contact person of a spouse or child who will be acknowledged on his or her behalf. You can also acknowledge nurses, doctors, and regular volunteers at your local hospital's breast oncology unit.  Make sure to provide the game announcer a script about what you are doing so your fans are aware and can participate.

3) Contact the people to be acknowledged and let them know they have been nominated to be acknowledged at this year's Annual Pink Out Game.  They will be announced and invited to come to the field or court to receive a boutonniere or corsage from an athlete.  Ask the honorees to meet to the side of the field or court when there are 15 minutes left on the clock before halftime.  Be sure to put them in the order you plan to have them announced. If they cannot or do not wish to attend, don't forget to make a list of these people whom you will acknowledge in name only.

4) After the last game before the Pink Out, turn in the total amount of boutonnieres and corsages to the florist and schedule the pickup for the flowers. Make sure to subtract the number of honorees who will not attend and send 100% of that person's donation to your organization of choice.

5) On Pink Out Day, wear all your pink gear!  Have the admission booth hand out a flyer to each person with an explanation of the Pink Out ceremony and a list of the honorees, participating businesses and organizations and on one side, and then ten lesser known facts about breast cancer on the other side. On the flyer, be sure to remind the honorees to meet at 15 minutes left on the clock prior to halftime!

6) Did the proceeds of any of the gear go toward a breast cancer research fund?  Before listing the honorees, have the announcer mention this to the audience, citing the company and research fund's name.  It goes without saying that you should ask the announcer to give tremendous thanks to your florist.  Acknowledge these companies who are truly in the fight for the cure! 

6) Announce the honorees one by one.  Have them take the field where they will receive their flowers from an athlete.  Have a parent with a good camera?  Take a group picture of all the honorees.  Also, take each honoree's photo with the athlete who gave them their flowers and either email the photo or print it off and send it to the honoree in thanks for their participation and their fight to end breast cancer!

Too late, you say, October is almost over. Guess what?  It's never too late.  If you can't make it happen this football season, begin talks with your basketball coach and athletic director about doing it in the wintertime.  If that won't work, collar your baseball or softball coach.  Remember that breast cancer has no season.

Otherwise, is there another cause that hits close to home?  Is a teacher or athlete's parent in the fight of their life?  Research other awareness months and their corresponding ribbon colors. Look at other causes that affect your community (autism, ALS, muscular dystrophy, multiple sclerosis) and use the idea above to create meaningful awareness in your school and community.

This is my liver on Halaven. Any questions?

See that bulge I'm pointing at? That's one pissed-off liver. Yeah, I don't think this is working.

For the last six weeks, I have been on Halaven. This is a weekly shot administered via my port and one cycle is "two weeks on, one week off." At first, it was chased with an Xgeva shot only, which is for maintaining bone density. Halaven is notoriously hard on one's neutrophils and blood potassium, resulting in neutropenic fevers and hypokalemia. I've endured two cycles and I'm ready to move on.

After the first treatment, I was mildly nauseated and had two days of low grade fever which went away with antipyretics. This is a snap so far, I thought! After the second week, on the Fourth of July, I went to the ER with a 100.8 fever that would not subside and stayed there for two nights, receiving cefepime IV and regular doses of Tylenol. The bone pain was, at points, excruciating. My bone marrow was going crazy trying to increase my white blood cell count, and my femurs, sacrum, ilia and spine were aching so intensely. I was discharged with some Cipro and told to get three daily Neupogen shots the following week. Neupogen is a cytokine which boosts the body's immune response resulting in increased white blood cell count. I'd pull up to Prentice Hospital's valet, dash up to the Maggie Daley on the fourth floor, get jabbed in my spare tire and head back north on Lake Shore Drive. By the second and third days, I really had to find something deep inside me to want to make the drive for more misery. The bone pain was akin to being electrocuted and when I'd get up to move from being seated, I'd shudder and shout out from the sensation of being tazed. Normally, I pick out a cute outfit with accessories and wear makeup (but no head covering) to the hospital. I walk in with perfect posture and confidence, smiling to anyone with whom I would make eye contact. For my whole life before cancer, people stared at me for being a beautiful and confident girl. With cancer, I am stared at for being bald, for having a weird lump with a tail under my clavicle, for seeming to be missing facial features such as eyebrows and eyelashes, and I am a hideous oddity. Going to the hospital, however, I usually enjoy taking care of my appearance. We are all bald and misshapen there, so if anyone is staring, it may be because they're actually appraising my appearance and confident carriage and not gawking at my stubble and bumps. Driving to the hospital for these shots, though, I wore cut up t-shirts and sweatpants with a hat low on my bare face. I'd leave briskly clutching my pinched tummy, making no eye contact so, once I retrieved my car from valet, I could sob alone in my car driving past all the beautiful and carefree people on Oak Street Beach as I made my way home. 

After the second cycle, I received a Neulasta shot which, like the Neupogen, boosts white blood cells, but prophylactically. Again, I was plagued with low grade fevers and bone pain, and again, I found myself in the ER after spiking a 101.1 fever. No one could seem to arrive at the reason for my fever -- an infected port? Pneumonia? Pulmonary embolism? -- and I didn't get to my room until after 3am after eight hours waiting. My WBC was rocking out and much higher than normal, likely causing my fever. I was hooked up to a vancomycin drip which promptly resulted in what is called red man syndrome. I absentmindedly scratched my head so much in its throes that I had to rock a bandage on the back of my head like Ving Rhames in Pulp Fiction. 

Since returning home, I notice I can't eat very much without feeling stuffed to the gills. I can feel my liver pushing into my stomach. I take an NSAID and that seems to help me some. I am not sure what is next, but I hope it doesn't involve steroids. I'm already bald and feeling ugly enough. 

steady but bald summer likely ahead

It's been a while, I know.

I've been on Arimidex for the last three months or so.  This is an aromatase inhibitor, or a hormonal therapy, and it blocks the estrogen receptors on the cancer to starve it of estrogen that it loves so much.  Seemed like a layup for me since my estrogen receptivity was 60%, plus I had my ovaries out, so any lingering estrogen floating around would be blocked from aiding the enemy.  The TCM practitioner I saw warned me that any measures to restrict my hormones (surgery, AIs, etc.) would not work for me. Hm.

Anyway... at first, I really thought it was working!  I immediately noticed that the tumors were retreating.  I could feel the bottom of my ribcage jutting out again.  No more muscle cramps in my back from the tumors pressing against them.  I was also beginning to take Ritalin for the fatigue associated with Xeloda.  That Xeloda just kicked. My. Ass.  I couldn't not nap every day and I was really miserable about that.  The starter dose of Ritalin was helping me feel like myself again.  

Uh, except for around the full moon.  For at least three months in a row, I would feel my energy and overall mood rise to an 8 out of 10 (where I prefer to be) but then crest at a 10 just before the moon was complete.  I would observe myself becoming more and more manic, but I couldn't stop.  It was like riding a bike downhill and not having brakes.  Then, on the full moon, I would have headaches, earaches, and an animalistic rage.  The night always ended with me in shuddering sobs, feeling that I was helpless.  A few days later, I would have no recollection of those emotions that just destroyed me.  I would try to conjure them up and get nowhere.

I saw the oncology department's psychologist and told her about this trend. Obviously, she made no comment about my emotions being correlated with the lunar cycles, but she did ask me to chart the moods in my calendar to see if I could somehow anticipate and possibly stave off a breakdown.  She sent me to the department's psychiatrist, a Turkish man with continuous facial tics.  I sat watching him grimace and wince, and I also had no control over my hands, nails ceaselessly picking and peeling my wonky post-Xeloda fingers.  My tongue could not stop thrusting against the back of my teeth.  I felt like Bruce Banner; my arms were clenching and my heaving silicone bosom was about to explode through my t-shirt. Maybe it's too much coffee, I asked.  Off the Ritalin, he said.  Off the Ritalin and off the Effexor. Let's go back to Zoloft. That worked well a long time ago.

"Uh... what about withdrawal side effects?  How do I mitigate those? Benadryl?"

Wincing, "I don't know about using Benadryl.  What side effects are you concerned about?"

"Uh, feeling like my brain is being electrocuted? Like my tongue is hooked up to a car battery and being jumpstarted?  Like someone is shaking my head violently as I go about my day?"

"Oh.  Well, just open the caplets up and start taking less and less each day.   And at the same time, start ramping up on the Zoloft.  No Ritalin will make you (rolls eyes and slumps in seat) so be aware that that will happen." Rad.

What I realized upon further research was taking all these meds had me on a one way train to Serotonin Syndrome.  I also think this cocktail really exacerbated any manic-depressive tendencies I have.  Don't get me wrong -- I LOVE when I get that sense of flow when I move from project to project to project seamlessly and get loads done -- but I also know it will end badly.  All I want is to be level.  Steady. A 7 or an 8 on the Richter scale.

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So yeah.  I quit Ritalin first and was a lazy blob all weekend.  This sucked for everyone because Mommy was useless.  I felt like some kind of junkie, splayed out and sweating in my bed.  Then, I did a week or so of titrating my Effexor, opening up the caplets and dividing all the tiny beads equally into shot glasses, first in half, then in thirds.  A Benadryl at night to keep the zappy-guns from shooting me in the face.  One little pale blue Zoloft in the morning to keep me flying right, albeit with a little bit of motion sickness and, er, gastrointestinal issues.  I'm proud to say that I am off the Effexor completely.  The miserable withdrawal symptoms are known to bring people to their knees, and I am glad I am done with that.  Eff you, Effexor.  

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In addition to the change in medication, I also got lazy about taking my supplements.  Casey found this article about the Super Cocktail of herbs, spices and supplements and I was taking them with no trouble for a while.  Then we had a few weeks of super-busyness -- camping, wedding, last week of school -- and I kept putting off the process of counting out all the pills and placing them all in the pill boxes.  Then, I began noticing the pain and feeling of fullness.  Finally, I could again feel tender lumps under my ribcage.  After a full day of scans, I ate my first non-barium meal and then marched my buns over to medical records where I picked up a CD of the images and the printed reports. Booyah.  

I was not surprised.  I can totally feel the mets.  I know when they are growing and when they are shrinking, much to the amazement of my doctor's NP.  Not sure how I couldn't feel them; at 5'2", there's not that much room for them to stretch out undetected.  Maybe having been a dancer has heightened my kinesthetic awareness to extraordinary degrees?  Sounds like anything that will work for me will not be hormonal therapy -- they've all been a bust.  The TCM practitioner I saw told me that would be the case.

I'll be going in on Wednesday to get the new regimen.  The NP tells me that Taxol will be back on the table as an option since it worked so well for me last year.  Losing my hair is a bummer, especially since I FINALLY like what it's been doing and have found someone to keep it that way, but worse is the steroid's effects on my face and body.  Ugh.  I wish I could forgo that part.

Springtime and WWC

(Written on 3/19/14)

 

As the weather became more and more unforgiving here in Chicago, I became less and less able to withstand the crippling fatigue and palmar-plantar erythrodysesthesia in my hands.  The Ritalin gave me some zing for a while, but I'd do a whole lot around the house and my fingers would pay dearly with deep, stinging cracks on the tips that are, to this day, not all healed.  It doesn't seem like such small wounds would render a person so miserable, but using my hands became just unbearably painful.  I tried every trick in the book -- bandaids, Neosporin, Vaseline, bag balm, Krazy Glue (Kragle!),  cotton gloves to bed, even plastic gloves all day around the house -- and I finally messaged Kelly to see if there was anything else I could do to help my hands heal.  

At the beginning of March, I went in for an appointment to see Dr. G and was advised to take five X instead of six to lessen the toxicity levels.  I mentioned to my Dr's fellow palpating me that I was feeling a bit of pain to the right of my spine, but she said she couldn't rule out that it wasn't due to anything musculoskeletal.  Then, when I reclined back with my arms over my head and exhaled so she could feel me from the front, she pressed below my ribs, just to the right of center and I calmly said, "Ow."  Orders were placed for me to have scans at the end of March and I was to take some Neurontin for the pain in my hands at night.

Something didn't feel right to me and my liver was feeling pretty mad about something.  I just knew something was up.  I was suddenly aware of my liver again. When I did a seated forward bend, my liver was getting mashed up into my chest and I would have an upper abdominal muscle spasm.  So weird, right?  I could also feel some angry swelling at the front so I bumped the scans up. My bone scan was cancelled because someone dropped something radioactive in the Nuclear Medicine department (lolz), so people were walking around with Geiger counters beeping and I was ushered into a conference room.  After an hour, the nurse who accessed my port came in and told me to just reschedule the bone scan instead of pushing everything on the schedule.  I just ended up getting the CT, which showed that the Xeloda had shrunk or stabilized all of the cancer that they've seen before, except there were three new subcentimeter lesions. Sumbitch.  I knew it.

Casey and I went back in the following Monday and Dr. said that, since there was not a massive amount of new growth and that the rest of the cancer was pretty stable, I could have the choice of doing another type of injectable chemo (Eribulin) or I could try an aromatase inhibitor (Arimidex) which keeps any estrogen left floating around in my bloodstream from feeding my cancer.  I was not about to jump back into losing my hair with the Polar Vortex lingering so I decided to give the AI a try.  It's a tiny pill I take every night (not unlike a birth control pill).  Also like a BCP, it makes you FUCKING CRAZY.  As in, every full moon, I completely lose my shit. I plan to take two Ativan next time and sleep instead of cry and beg death to take me.

You know those Facebook shares you see where someone types, "If you don't cry when you watch this, your soul is dead and you are an unfeeling robot"?  Up until that point, I was the unfeeling robot, watching videos of cute little children being reunited with their fathers coming home from the war with zero vagal stimulation. Without estrogen, I had become scarily adept at turning on and off my emotion.  Upon starting Arimidex, I became... weepy and sentimental!

Another annoying side effect to the AI (or, hell, maybe living life with uncurable cancer) is that my reality catches up with me more often, no matter how hard I try to outrun it.  Those are the days I really realize, Oh, I am totally not going to be a grandmother. Oh, shit.  I just realize that I got cheated and things are not going to be better, only worse.  I am lying here on my beloved beat-up couch, pinning cute shoes to my Pinterest Wishlist board like it matters but it doesn't. I'm tired, crabby, hungry and slowly but surely resembling a tree stump, and for what?  What is the point? Oh yeah, life insurance... 

Those are the days I want to stop the charade of being that Wacky Mom I see on the playground who whisks her progeny from school to the bakery for a cookie and then off to the park district, sweating and grinning and trudging on.  I want to just go to a room that is quiet and brace myself for death to come and quickly snatch me away before I feel any remorse about whom I've left behind.  It's some dark shit, huh?  Well, I feel it.  Doesn't help that, literally every day, I hear of someone who has just been diagnosed or has just died of cancer.  It feels like World War C and I've already been bitten.

 

I've begun taking my Chinese Herb pills with more frequency... or at least attempting to.  I've inquired about Yttrium 90 radioembolization.  Turns out that, anatomically, I am a candidate and the doctor at Northwestern is possibly the number one doctor in this area, but getting insurance to cover this procedure is not always possible.  Casey is transitioning jobs, too, so even though the doctor's NP has offered to check my insurance, we'll be on a new one soon, so I have to wait to even see if I can have the procedure covered.

I am trying to look forward to Spring and Summer.... to going to all the city pools and the beach with my boys, riding bikes, and eating ice cream.  

December to remember

Finally had my ovaries removed. I knew they were working just fine and that I was experiencing a normal cycle and, wouldn't you know it? Right before my surgery date, the poor babies delivered their swan song: my first period in over a year and my last one ever. Made me sad. Had my IUD removed while I was under as well.

I was truly very uncomfortable for a few days. First it was just being excruciatingly bloated and bleeding a lot. Once that subsided, I experienced that feeling you have after you give birth where you really feel like something was just torn from you and you're tender and contracted. I have three very small incisions -- one at each hip and one under my navel -- and I felt like someone put an eggbeater in there and made a meringue of me.

Just prior to that, I visited the Traditional Chinese Medicine practitioner. It was a fairly intimidating experience but he feels confident he can help me. $500+ later, I walk out with a huge bag of pills and teas.  I am having a hard time taking them all but when I do, I think they help my energy.

Right before that, I received a prescription for Ritalin. My energy levels have been so low and so I am trying these to help keep me from sleeping all day. Combined with the TCM herbs and a big fat smoothie with spinach and Green Vibrance, I can at least stay awake, but I live here on my couch all day, reading, folding laundry, and picking my Hand-and-Foot syndrome afflicted feet until they bleed. It's pretty awful -- dermatillomania and HFS do not mix -- but I think I learned my lesson after making it so hard for myself to walk. My big toenails are pretty much kaput, too. My big toes are so big and they just continually get jammed into whatever shoes I am wearing. Casey bought me a new pair of ski boots and the result was a giant scab under my nail. Threw out two sets of nippers -- rendered dull and useless -- after that bender.

I changed my regimen on Xeloda to one week on and one week off. Seems to be a good thing for me because the second week was always just brutal to my energy. I think it works on my cancer.  I haven't felt any palpable tumors nor much pain if any at all. I have scans in early January and I am hoping for fabulous results.

Amidst all this, I dealt with officially and formally retiring from my job, cleaning out my office, being at home with my children while my husband was out of town and my youngest son had a mumps-like illness which necessitated two trips to the hospital and a week out of school, and all the anxiety and panic the holidays bring. I was truly peaceful when I found myself without any dirty laundry to wash, the house was completely clean, and we three were working well together.

I turned 41 and had two wonderful days of birthday fun with my family and friends. Now, alone again (Casey is on a ski trip with a friend) with two overly-rambunctious boys finally in their beds, the Christmas shopping done, I am finally catching up with my feelings which I've been keeping pushed down deep inside. I am sad. I feel so ugly. I don't look anything like the pretty lady I used to be. I am so mutilated and bereft of any beauty and femininity. I feel so alone. I wonder if I will ever see many of my friends again. I am tired of being tired.

Why, I'll murdelize ya!

After some slowed-down cricket music, some crying, and sleep, I awoke with a hypothesis: I think there's just too much goddamn estrogen in my body. The X was able to work best just after I'd received those couple ovary-punishing Zoladex implants, but once then, my ovaries were able to rebound and begin delivering the goods to the cancer cells once again, sort of kicking X's ass. In my mind, it plays out like a Three Stooges episode. Curly is my ovaries, getting knocked down and then getting up, slapping his own face a bunch of times, pulling his trousers up over his belly and getting back in the ring for some more slapstick hijinks. Just have to get Moe up in here and knock a bitch out... 

I'll miss my estrogen. It's been a lovely visit since I stopped Taxol but its time to say bye-bye.

Dubi-X

I am having some doubts about whether this Xeloda is working after all. Initially, I know it must have been working because the pain and palpable lesions definitely subsided. Over the past two weeks, however, I have had pain in a very specific area in my back, just right of my spine. When Casey rubs the knotty muscle there, it feels so incredibly horrible that it feels good. Odd, I know. Cue John Cougar. It's really hard to articulate the sensation.

I've also noticed that I can only sleep on my left side. I get that suffocating sensation if I don't like something is kinking my vena cava. It's the same feeling we women get when we are pregnant. Good sleep is gold to me and it is pretty distressing to wake up to that sensation in the night.

Over the past several days, I've noticed a very uncomfortable fullness in my thoracic area after eating, like being pregnant again and my uterus is compressing my lungs. My shirts get crazy tight around my ribs, too. I also get some bad reflux. I just lay back on a pillow to try and open my ribcage to have room to breathe. Yeah... Thanksgiving is gonna be great.

Phaneromania and hand-foot syndrome make for a bad match. My fingers are peeling off and I can't not help that along.  I have learned that the BEST lotion ever is Trader Joe's Midsummer Night's Cream. It's unscented and actually feels like it soaks into my rawhide hands.

I am glad that I am seeing my doctor on Tuesday. I have no scans scheduled but I think I'm supposed to be scanned after one more cycle of X.  We'll see what they say... I don't like to wait. If I feel something, I want to get going IMMEDIATELY. I fucking hate this. I fear there is bald winter in my immediate future.

Retirement: Giving a Ripped up Middle Finger to Making a U-Turn If Possible

At the beginning of this month, I announced my intent to retire. It's been a gradual but inevitable detour off the road I've been traveling for 20 years and I've hit the point where my internal GPS has not started the refrain of "Recalculating... Recalculating..." but at this point, I am past the rumble strips and would definitely sustain some damage if I jumped the median back on to the highway. Now begins my slow, circumvalent exit, the main road still visible as I curve around and under it to get to my new main drag -- being a stay-at-home parent with cancer -- on which I will "scoop the loop".

This last week was really all about the grisly underpass where the hitch hikers take a piss: putting together what is needed for my most veteran instructors to run two back-to-back competitions. I spent the week marveling at the new technology we use to get the actual data needed for the competitions (the team names, routine entries, invoices, and payments made) but the week culminated in the frantic manipulation of the low-tech. Yes, girls. Going to The Kinks. This is the old State Director name for Kinkos Copy Places, now FedEx-Kinkos, but maiden names die hard, right? Funktionslust and the buzz I get from having everything in its right place, clipped and stapled and arranged in plastic file boxes for the user to open and smile, gave way to begging for more, more, more colored paper and rolling around on the floor in a most undignified manner, licking fingers that touched the floor to count and recount scoresheets. The hand-and-foot syndrome that I was able to avoid up until then started with the skin of my right middle finger peeling off, followed by the corner of my left thumb. Then it's driving around town to pick up my two bundles of joy from school and drop off my other two bundles of joy (each event's file box) with an awesome Utah transplant just leaving the dance studio near me. Relieved and shot, I returned home to open a card from a dance team (whom I'd all but abandoned ever having as a customer up until two years ago) with a sweet note from each dancer and a picture of the team inside. I just collapsed in Casey's arms in tears, spent. Yep, this is right choice and, yep, it still hurts like hell to make it.

Here, my phone is propped up by a richly deserved glass of wine on Friday night.


This week is more business as usual. I close out the return paperwork and send it back, but I'll also send my supplies along with it for everyone in the office to pick through, take what they want and send the rest on to whoever needs it. I liken it to a retiree's version of a Tibetan Sky Burial. If you don't know what that is, read about it but don't watch a video about it.  It's much more poetic in theory than in practice.

I'm struggling to finish this cycle of X. I'm sick to my stomach with a big sore in my throat and I slept all day, but Friday starts a ten-day break during which I'll get my oophorectomy. I definitely don't think my ovaries are going without a fight; there's still a faint diffusion of lust directed at random males in my path that tells me I'm in the weakest of heat. Don't even take it personally -- it's just chemicals, y'all. My husband gets to take it personally (ba-dum-bump CRASH!)

Frexles and My Liver Goes to the Aesthetician

Hey, all! So I'm going on Cycle 3 of X. I finally figured out that nadir on Xeloda is a thing. The Thursday night I take my last dose, I am so grossed out about it. Not only does taking the medicine make me gag but the thought of food makes me shudder. Wut? This, coming from the lady who gained 50 pounds during her first pregnancy? I have always loved food so much, but at the end of two weeks of Xeloda, I'm ready to just pound some tasteless Soylent space-shake and sleep. Maybe I'll drop some of this weight I gained from the steroids I took on chemo. That'd be a perk.

At this nadir, just driving a fucking car for five hours sends me into the 13-hour sleep bender. The kind that makes you have the most insane and vivid dreams (as confirmed by Louis CK here in a most NSFW manner -- http://youtu.be/BEBy3sKTG-c). 

I keep having a dream where I am in a lovely spa setting and my liver has been disembodied yet I'm aware, most relaxed, and feeling what is going on. It sits on a white towel, and it is a large, smooth, semi-opaque maroon cutlet with small protuberances of varying sizes, like boiled fingerling potatoes or cuts of string cheese, throughout. Some are visibly sticking out. Others create an uneven surface underneath.  A pair of small, lovely ladies' hands, covered in massage oil, begin with effleurage strokes, gently stroking my liver and applying subtly increasing pressure to *pop* loosen the largest tumors closest to the surface, leaving holes. After a short time, the surface of my liver looks like a slab of black cherry jello salad that used to have grapes in it, and now there are perfectly shaped craters instead. Then, the hands replenish their aromatherapeutic oils and begin deeper massage, loosening smaller masses that find their way through the larger holes. Each time, the hands wipe these aside and retrieve another squirt of lavender-scented oil. Lastly, the hands press deepest to extract a slurry of gravel-like tumors that emerge from the holes to be hygienically wiped away, leaving me with a liver that is clean and translucent through pathways where the light shines through. I know this sounds hella creepy but it truly is very relaxing and pleasant. What do you expect from a phaneromaniac? I feel such a sense of calm and release of anxiety and tension during this imagery.

On the topic of aesthetics, I have noticed an increase of dark freckles on my face. Fortunately, these aren't like the dirty looking melasma we women get from being pregnant or using hormonal birth control. I was dreading the return of the Dust Mustache! Nope, these are just scatterings of tiny dark spots across my nose, chin, and even on my lips. Hopefully I can keep it under control by being even more vigilant with the SPF.

I go back to the gyn-onc tomorrow to sheepishly apologize for the last minute cancellation of my oophorectomy and discuss rescheduling.

X-hausted

This past Friday marked the beginning of the second cycle of Xeloda. I freshened up my pink hair for the last time and after some Thai food, headed to the Metro to see Cocorosie start at 10:15. I was more than a little worried about how I'd be able to last since I usually go to bed at about that time, but drank a bunch of disgusting Starbucks coffee and yummy Diet Pepsi and felt good. I was able to squirm onto the balcony to get an unobstructed view, but I found myself next to four people who were not at all interested in the show, talking loud, taking a bunch of pictures of themselves and loudly exclaiming that they smell weed in the air. At one point, the woman standing next to me at the balcony was getting awkwardly humped by her male companion, and I fantasized about showering them with a spray of pink pills and pad Thai. It would be the closest homage to the cover of Noah's Ark I could get.

I was able to make it through the night okay and didn't even have one beer, but I slept the next day from noon until 4. Rick and the twins and the Kearnses celebrated Nelson's 5th birthday with us with a little bowling at Timber Lanes, Pizza Serio and some ice cream cake at our house. We all went to bed at 9:30. The next morning, we took the boys out for brunch at Orange and I was so tired, I was shaking. I felt like a car driving down the road with wheels falling off its axles. I went upstairs and I didn't get out of bed the entire day. I was so physically depleted and it made me incredibly sad.

It's one thing to take delicious naps on a Sunday afternoon. There are usually few things I would say are better in the world. It is something else altogether when I would actually rather do many other things and can't because I only have the energy to cry and sleep. I staggered a few episodes of Orange is the New Black with sleep until the late afternoon sun shone through my bedroom window. My mother (who deserves everything good the world has to offer) listened to me sob on the phone and came over to help Casey make a hearty chili and knock out some laundry. After we put the boys to bed, she helped me dye my raggedy looking pink hair back to a chocolate brown, made us some Sleepytime Tea, and after we fixed our nails, we all went to bed.

My mom got the boys up and out to school in the morning. Casey pulled his back at the gym and stayed home, working from the living room floor seated against the back massager. After 12 more hours of sleep, I finally woke up and headed downtown to see my oncologist. It was just a basic check-in, but I brought up my desire to have an oophorectomy again. I had emailed his PA about it last week and she said she saw my point. I don't want these things in me that could compromise my progress on chemo, and I probably should have them yanked because I'm more susceptible to ovarian cancer anyway. Last time, he said I couldn't because I was on Xeloda and the laparoscopic surgery would be a bad idea. Seemed odd -- I had a friggin' tube rammed into my heart and a foreign object implanted under my skin while on full-blown chemo, and that was okay? Even though the gyn-onc had the ooph scheduled, we called it off because my hem-onc said no. Today, he said there was no point to having the ovaries removed. He said that my blood test in July indicated my ovaries were shut off and I was post-menopausal. Huh? This isn't what I remember, because I had my first Zoladex shot to shut down my ovaries on July 30th. Had I been premenopausal back then, I would have started on Faslodex, but they weren't yet, so they were giving me Z first...until I realized my cancer was blowing up again. 

He said that, at this point, the surgery would be unnecessary. When I attended the FORCE Conference two years ago, I remember hearing the newest finding that BRCA carriers who have already had breast cancer and are already well into menopause have something like a 68% chance of recurrence as long as they keep their ovaries. Even post-menopausal ovaries emit low levels of estrogen, enough to nourish estrogen-receptor positive cancer back to fighting form. I remember this vividly because I thought of my mother (BRCA2, cancer survivor, has her breasts and ovaries) immediately.

"So they are emitting nothing?" I pressed. He said he would throw the ball back to my gyn-onc and if she again agreed to do it, then fine. He just thought it was unnecessary. Grrrr...

Came home, and my wonderful mom made us tomato bisque, grilled cheese and honeycrisp apple wedges so I could take my X and I fall back asleep on the couch.

Vitamin X

Hello and thanks for stopping by.  I've been pretty quiet lately, and this is because I've just started taking a new at-home chemotherapy called Xeloda: For the DIY generation!  Just kidding.  Nobody markets it that way, but it would make sense that they did. Reminds me of some ancient Mayan village you take a tour to see on your Cancun vacation because admission to Xcaret was too expensive and the excursion to Xel-Ha was too long.  You pile into your rainbow velour-upholstered coach with purple tinted windows, air-conditioner blasting a phony citrus aroma. Your driver, Jose, blasts down the coast on dirt roads at 118 mph and you feel queasy and exhausted before you even get anywhere.  As with each chemo regimen I try, there's a breaking-in period when I have to begin to learn how it affects me and how to work around the side effects. I'm in that period at the moment.

To back up a bit, after trying Zoladex (hormone therapy) for two months, I quickly figured out it was not working.  I was taking the Z to shut my ovaries off so they would not create estrogen that feeds my tumors.  In addition to the exponentially increasing arthritis I was feeling and seeing (well hello there, Heberden's nodes), thanks to being rocket-boosted into peri-menopause, I was feeling pain again where I knew there were larger tumors before.  Since pain can sometimes mean that the tumors are being crushed by the chemo, I mentioned to Casey that I was feeling them and then observed the pain for a few days.  From there, I mentioned to my physician's assistant that I was feeling pain, to which she replied, "Liver lesions aren't usually painful." Um.... yes. Yes, they are.  This was how I found them in the first place.  Maybe mine have been particularly painful because they grow so fast that they can't generate enough blood supply to keep up so they become necrotic, like a Hostess Snowball cancer cake with a creamy death center.  Maybe the tumors hurt because, like sharp little heels and knees of Rosemary's baby, they push and poke against ribs and stomach.  All I knew was that these HURT and I could feel them sticking out again when I rubbed my middle.  I knew my liver must have been heavy with cancer because, just like a pregnant woman, I could not lie on my back or on my right side. My vena cava (the major vein running down the middle of the body to the right of the spine) was getting kinked under the weight.  I would wake up feeling like I was being smothered and try to turn over.  I couldn't lie on my left side, however, because there wasn't enough room for my bulging liver between my ribs and my right hip bone.  I resorted to sleeping propped up on my back.

Scans proved what I knew to be true: the lesions that had been shrinking obediently while I was taking Avastin and Taxol for nine months had grown back.  Some had grown long and skinny this time, and some had doubled since the last scan.  Plus, many, many more had popped up, and my bone scans indicated my arthritis had ramped up like whoa.  My doctor felt trying Xeloda might be the next best step.  I think his thought was that, going back on Taxol/Avastin might render the cancer immune to that regimen.  We knew that one could work, so we should keep that one in the back pocket.  I think that was it.  There were four people in the room besides me so I am not sure exactly but I remember him saying something to that effect.  I am easily confused due to chemo brain.

So I was equipped with a sporty blue neoprene wristlet emblazoned with XELODA, the brand of capecitabine tablets I was to take, filled with a tube of Udder Cream; a little cookbook for people who want to learn to make really disgusting American fare in the name of being easy to digest, nutritious(?) and easy to make; and a book of very basic information about the drug with pictures of old people clutching youngster's hands and quotes that say, "I feel like I am back to my old me again." Or something. Recycle.

I received my bottle of pink horse pills; I am to take three in the morning and three at evening, within 30 minutes of meals.  The most common side effects of Xeloda are nausea, vomiting, diarrhea, and Hand and Foot Syndrome (hence, the Udder Cream). It has been a week and I've grappled with some pretty miserable nausea but no puking.  No dropping the D either, but I'd take that over feeling as green in the gills as I have been feeling.  Like all chemos, there's definitely fatigue.  I have been binge-sleeping.  I was given a prescription for some Compazine (prochlorperazine) and was looped out of my gourd for an entire day, so that clearly isn't going to work for me.  I went to Whole Foods and bought ginger caplets, ginger emergency chewable lozenges, and some crystallized ginger.  Apparently, ginger works better than many drugs do.  We shall see. All I have to say is that those old people standing in front of those misty watercolor paintings of a playground with their faces all happy-crinkled with relief must have been some hard partiers in their day.  How is this like being normal again?!

The good news is I do think it's working.  Pain is gone.  Some people stay on X for years and years, so my hope is that these side effects subside after some time and I, too, can look forward to holding my youngsters' hands wearing muted mauve gauze pant suits and a crinkly smile.

Late Night Insane Musing: F Cube

As a performance artist, my name is Flaming Phalanges. Since I open all my oeuvres angrily chanting with the crowd about my "Flaming! Fucking! Phalanges!", my younger in-the-know fans (who may or may not have taken Anatomy 101 yet) refer to me as F Cube. Yeah, I'm a stickler for spelling but it's cool; the nickname gives me a little 90's hip hop street cred with a nod to classic rock at the same time. You know the old Pink Floyd lyrics: "We don't need no education." Yeah, man. We don't need no fuckin' spelling, either. We put our backs into it. We got F Cube, baby. 

My signature move is a fast, heels-only walking across the stage, knees slightly bent, legs slightly apart. I pick up various household objects with only the fold of my palm... and then drop them. Part of the allure for my audience is trying to determine my reaction to dropping the items, depending upon what they are. Windex bottle: I shrug and contract in angst. Remote control as I lie supine: simmering furor. 16 x 20 mirror at the finale: an explosion of mock jubilance followed by frenzied sweeping with a heavy broom, followed by more dropping of the broom, which incites faster, more furious sweeping. I end the piece by smashing the broom to the floor and exiting the stage. Does she end in victory or defeat, my audience wonders, murmuring to one another as they crumple their Playbills, gathering their belongings and meekly filing out of the amphitheater.

Neo-grunge group Screaming Knees accompanies me in my most lauded work, performing their rainy day B-side dirge, "Norco is Worthless" in the round so the audience can sit close enough to appreciate the intricacy of the choreography.  My knees and ankles are mic'ed so that I may join the band in my own bio-percussion solo. The choreographic motif involves a lot of rolling: actually rolling on the floor, rolling of ankles, flexing back toes with the opposite heel and a stuttering roll through to a pointed foot. I distribute opera glasses to the entire audience so its quite a spectacle (pardon the pun) to behold the reflection of the stage lights in countless gleaming lenses studding the velvet-dark arena like a galaxy of stars. The audience truly becomes part of the art as the inert, useless heavens observing my expressions of pain and rhythmically clicking joints from on high. 

I'm currently working on a lighter, more humorous piece to a track by Violent Sweat (featuring Ray Ray the Cat) called "Vanilla Antiperspirant (Nom Nom Nom)". It's still in production phase, but I can see early on that my character has a saccharine-sweet yet salty-tart attitude. The prop I've incorporated heavily into the choreography is an electric fan measuring six and a half feet in diameter, painted an angelic, pearlescent white. We determined that, even though I am periodically doused with buckets of water during the piece, we really wanted to drive that feeling of hot, miserable wetness home for the audience. Therefore, my costumer is working on a long wet-look nightgown for me, likely made with a pastel ciré Lycra for a look that is sloppily sexy yet innocently frigid. Barring any electrocution risks, the performance promises to be positively high voltage!

August Mexico sun vs. Zoladex

Greetings from Mexico! I am sitting under a palapa on our last full day here, awaiting the little rainstorm to blow over. Being outside in the shade is fine for me; I've spent five days slathered in SPF 50 and 100 lotion, wearing a wide brimmed hat at all times (even swimming), and sitting in constant shade only to find myself inexplicably burned. And then I read...Zoladex and sun don't mix. Ah well... Win some and lose some.

I have been off chemo for a month now. My latest scans show my cancer is holding steady; nothing is growing or spreading, but nothing is shrinking either. My doctor gave me the choice of a) continuing to flog away at the cancer using chemotherapy or b) take a break from chemo and try hormone therapy as a means of maintaining my current cancer status or possibly improving it. 

My husband burst through the door that Thursday after my last scan to tell me the news in the most neutral manner possible. The PA who returned his many emails and phone messages to the hospital was very pleased to report that the cancer was stable, but Casey knew I would be less than thrilled to get the news. I was given the chance to take a break from chemo at the start of the summer but I chose to be a heroine and keep going. My most acute side effects (bloody noses, mouth sores, neuropathy) had resolved and I was only left with mounting fatigue to grapple. Only fatigue. Ha. 

When my boys were at camp, I worked or cleaned my house until I fell asleep. After picking them up, I'd scan the Chicago Park District pool schedules for the soonest open swims we could enjoy together, laughing and bobbing like corks in the water.  I wanted to have a fun, carefree time with them and I wanted them to have fun with me. Last summer, before I knew about the dark, parasitic masses growing inside me, I spent afternoons at Montrose Beach with them full of anxiety for no apparent reason. I would beg Casey to let me nap on weekends. Last July, I drove to an ovarian cancer screening barely able to hold the steering wheel. When the doctor asked me how I was doing, I told him I was so tired that I felt disoriented. "Have you seen your oncologist recently?" he asked. I drove back up Lake Shore Drive sobbing to my helpless husband about how exhausted I was. The tumors were growing so fast and leeching the life from me. My brain was sounding alarm bells but I was hitting snooze snd rolling over. 

At the start of this summer, we spent wonderful days riding bikes to California Pool and doing laps around the conjoined paths that ring Horner Park. The next day, I'd pay for it by spending the next morning slack-jawed and lead-limbed on the couch in the darkened living room; hovering between sleep and wakefulness; torn between caring for my house, my job, my sons and myself. The boys would be whisked away by a neighbor, a relative, or a nanny. I'd eat to try and energize myself and then, paradoxically, never have the energy to burn it off. All the responsibility-juggling eventually took its toll and I was fat, tired, and harried. I sobbed upon hearing that the three summer cycles of chemo didn't pay off with another huge reduction in tumor size, but once the dust cleared, I told my oncologist I was ready to try hormone therapy. Since estrogen has been found to fuel my tumors, the hormone therapy drugs use a variety of means to intercept that function, hopefully starving the tumors of what they need to thrive.

After assessing my current hormone levels via blood test, it was determined that I was not actually in menopause even after four months of adjuvant therapy, more than three years of tamoxifen and another nine months of chemo. We Kintonis girls are FERTILE. I am being given an injectable implant once a month called Zoladex which will shut my ovaries down. Each month, my hormone levels will be checked and once it looks like my ovaries have tapped out, I'll receive another type of hormone-suppressing injection called Faslodex. That one is a huge needle in the ass which delivers the goods slowly. Sounds vaguely porny. If I had any sex drive left, I'd care! Anyway, until I am declared menopausal, it's a thick yet painless shot in my belly fat. I guess it's good for something, right?

Until my next visit with my doc, I'm tossing around the idea of just having my ovaries removed. Since I have the BRCA2 mutation and am more susceptible to ovarian cancer, I should probably just yank 'em out and bypass the whole Zoladex thing. It's like I'm playing some sick game of chess with body parts, making risky moves and sacrificing pawns to beat this formidable opponent. For now, I'm enjoying increased energy, growing hair and the start of the school year!

Teaching Cancer to Cry

I just want to share an amazing, amazing blog called Teaching Cancer to Cry. It is written by a man in New York City who has Stage IV terminal Colorectal cancer who has decided, after undergoing some grueling surgeries and ass-kicking chemotherapies, to stop treatment. 

In many ways, I find our experiences so similar. He was a dancer, he builds bikes, he loves music and cooking, and he's almost exactly a year younger than me so, yeah, we share so many of the same Sagittarian characteristics: voraciously creative, never fully resigning oneself to conventional adulthood, and blunt as all get-out. I totally think that he and his beautiful dancer wife would be fast friends with us and our other beloved best-couple-friends, the Kearnses. They lived in NY, he loves bikes, they both love cooking, and they share our same urban-dwelling aesthetic.

I literally read his entire blog from start to finish on our car ride to Detroit. 

You should check it out: 

http://www.teachingcancertocry.com/

payback is a bitch

This cancer feels like a prison sentence and it's only been eight months. I can hardly imagine being four or more years and countless treatments in like young women I've met. Living like this feels like payback for a life spent beautiful, fit and happy. Somewhere, someone who wasn't so toothsome and hated me for it is grinning her ass off.

I think summertime and all the bare, sweaty skin just brings my awareness of how much I've been physically altered to a hideous, pulsating head. My hair is thin and I appear to have a bald spot and receding hairline. In the winter, hiding under hats was easy. Even my all-cotton, homemade kufis don't save me because a hot flash in the sweltering heat of day strikes and it needs. To. Come. Off. 

I barely have any eyebrows or eyelashes. All the makeup in Sephora applied expertly really, in the end, is pointless. With no lashes, everything just runs into my poor blinding eyes.

Tank tops don't hide the bulging port (and grisly scar) and the accompanying ripple from the tube that goes from it to my collarbone (and another scar) to my clavicle and into my heart.

I've gained almost 10 pounds. I never had to think about calories or portions and now, I'm painfully aware that I can have 1300 calories or less. Can't exercise and being tired just makes me want to eat more. Even if I have an active day and log in lots of activity, I will end up paying for it by being exhausted in a day or two. Not the kind of tired that you can snap out of with a good cup of coffee or two. The kind of tired you can't shake with an XL Dunkin' Donuts coffee, three Coke Zeros, and a scoop of Cardio Cuts. Having all that caffeine is actually worse; you're wired and exhausted so you can't sleep, and then you end up sobbing over a construction paper jellyfish your preschooler made because you're sad and delirious.

Let's not forget the toenails. No evidence of fungus, but the big toes are definitely at half mast. Kinda hard to hide even with peep toe shoes.

I used to be quick-witted and analytical, fast-talking with the ability to pull out just the right four-syllable stunner to explain my thoughts. Now, I struggle with embarrassing aphasia. i speak slowly and deliberately, pausing and fluttering hands to grasp the main word that seems just beyond my reach, so people continually finish my sentences for me. I have a tough time following plot lines and dialogue in movies and on television, and though I read voraciously, constantly exercising my brain, my comprehension is taxed so I reread phrases and paragraphs until I understand.

Mostly, it's the feeling of being too hard to look at that is so saddening. Sales clerks stare at the creepy bulge in my chest while they speak to my husband, and tables of senior citizens dining together don't quite know how to be subtle anymore about stealing a look at the poor bald lady with little boys eating in the booth behind them. It's hard for the cashier at the drug store to make eye contact. Little kids stare in horror until I break the ice and say hi and then they avert their eyes and hide behind their parent. For my whole life, I've gotten used to being stared at: a vivacious, athletic girl with dancing green eyes and bright, giant smile. Now, I try to see how long I can avoid my own reflection.

Avast Ye!

Ahoy, me hearties! For a fortnight, I've been belayed me booty, the glorious Avastin. Aye, those scurvy swabs on the S.S. Blue Cross Blue Shield had pillaged me plunder, declarin' it worth too many Pieces of Eight and nothin' but Fool's Gold for a salty wench with a pox like mine. Shiver me timbers! I was left to walk the plank and descend to the depths of Davy Jones Locker!  Aye, 'twas a black day...

Cap'n Bill o' the fair ship Prentice battled those scalawags and raised the Jolly Roger, commandin' surrender of the treasure Avastin. On this fair day, we reveled in its riches, settin' sail for the calm winds o' the bonny Isle of Ned!

Gangway and God Speed! Arr...

On Being a Blue Ribbon-Winning Cancer Patient

Having Stage IV cancer is like mastering a Level IV dance that is continually being edited and "spiced up," as we choreographers say. You are moving along, reviewing what you've learned and feeling good about getting the steps down, then you're told, "Okay, now add another rotation to every pirouette but don't use an extra count because then you'll be a count behind. Figure it out...ready? And 5! 6! 7! 8!" So you manage to get through the steps without tripping over your own feet but your posture wasn't great and you forgot to smile. "Guess what? Now, I also need you to raise your right arm instead anytime you raise your left arm. Take a second to think about it... And...  5! 6! Keep it SHARP!" 

I have been paying attention to the rhythm of my energy ebbs and flows over the last few chemo cycles (a cycle is three weekly Taxol treatments, the first and third of which accompanied by Avastin) and I've started to feel confident that I knew what to expect. I know that I will be completely whipped Week 3 so I plan to play catch-up Week 4. I know now that I need to take Claritin on Monday, Tuesday and Wednesday to combat the facial swelling and redness the Taxol and steroids give me after each chemo. I figured out that I need to take an extra Neurontin when my neuropathy in my fingers and toes begins to creep past the first knuckle. The fungus in my fingernails and toenails seems to be relatively under control now that I've removed most of my toenails and started using anti-fungal polishes. Even my eyelashes and eyebrows are coming back, pale and stubbly...and then?

I receive a letter in the never-ending onslaught of mailings from my insurance company that they will no longer be covering my Avastin. This little Capri Sun-sized bag of juice costs $14K+ and is a targeted therapy called an angiogenesis inhibitor; it cuts off the blood supply to the tumors by keeping them from growing new blood vessels. My first three cycles with Avastin gave me an almost 50% reduction in tumor size. When I had to take a two-month break from the Avastin to get my port placed during the following cycle, I had less shrinkage. I'm not an oncologist, but I tend to think that the Avastin kicks the liver mets' ass. Evidently, the cost of the drug is not worth the outcome and it is no longer being covered by Medicare. I guess many other insurance companies are following suit.

To add insult to injury, I've developed an irritating sty (or chalazion) inside my left lower eyelid...and just when my new glasses arrived in the mail, too. Chemo dries out my eyes and makes them even more susceptible. OSSUM. 

We'll see what happens this Tuesday when I go for treatment. I am planning to address both issues, the latter of which I'm sure will be solved with erythromycin ointment. Stay tuned...

Defcon 3 Hairlessness and Beauty

At nearly the end of my sixth month of chemotherapy, I fear I am steadily reaching the apex of hairlessness. I have exactly seven lower eyelashes remaining, all under my left eye. I have a patch of right eyebrow missing and the rest have dwindled down to a mid-90s minimum. Though something resembling lint has grown in random clumps all over my head over the two months I was getting only Taxol -- kinky and colorless like dust bunnies -- I'd be willing to guess that it will fall out after next Tuesday's Avastin/Taxol combo platter.

Four years ago, I rocked that Naked Ape look driving up and down Lake Shore Drive five days a week for radiation at Northwestern. I was bitter and pressed for time, trying to balance the increased workload springtime brings with not being late for my appointment so I wasn't late for letting the nanny go at the end of the day. At the same time, just as fast as it all completely disappeared, because I was no longer on any chemotherapy, I could begin to see the pale sketch of eyebrows returning. I had short, bristly lashes that would hold mascara, too. Last and most gloriously, I enjoyed my new gamine pixie of dark blonde curls. Curls! And blonde, too! That was a fun parting gift, perfectly timed for summer.

Now, what do I do? I'm hanging on to the last of what makes me appear mammalian, and it's starting to look really tragic. This wig looks butchered beyond repair and the only way to balance out the fakeness is by working my stage makeup skills. Add control garments to encase my growing girth and artfully tied scarves to hide my healing port scars, and I feel like a transvestite.

Hopefully the results of my next scan will make being hideous for a little bit longer worthwhile, but unless my Fairy Godmother comes soon bringing me free Zeltiq treatments and a three-week vacation on a tropical island inhabited only by blind people, I had better figure out a way to be comfortable with my appearance.

Crash Course on My Cancer

I haven't been here in a long, long time but I've been yearning to write, especially about what's happening with my cancer, and I think this is a good repurposing of Ye Olde Blogger for me. A Caring Bridge site didn't appeal to me -- it's clunky and I tend to associate it with terminal cancer (perhaps wrongfully so, or maybe I am just full of too much hubris). I also didn't feel like loading up everyone's Facebook newsfeeds with updates either. I know some people look forward to scrolling through puppy posts, cherubic babies, and triumphant dancers hoisting trophies as their little dose of happy with their morning coffee so I don't feel like foisting my day-to-day cancer issues on everyone. Maybe that's wrong but this feels right to me. At the same time, I know some of my friends and family like knowing what's up but don't know how to ask, and they feel cut off if I don't include how I'm doing on Facebook all the time. Due to all of these factors, I have downloaded the Blogger app to my phone and plan to let my over-sharing nature run wild. Please feel free to comment or lurk as you see fit. Get ready!

So...hmmm.. how to start. I suppose a good way would be to dispel some confusion about my cancer. I envy those of you who have never needed a crash course in cancer stages and treatment, and I will explain here just how friggin' dastardly cancer is.

My cancer is indeed breast cancer, not liver cancer. Though my breasts were removed in 2008 and I underwent adjuvant chemotherapy over four months after that, followed by six weeks of radiation and three and a half years of hormone therapy to block a reoccurrence, the cancer still managed to circle the wagons on my liver. Since the three tumors I had were isolated to the breast tissue and my sentinel lymph nodes (the first ones in line to absorb any cancer coming out of the breast) were cancer-free, I was labeled Stage IIa and that means the assumption is that it was isolated. Maybe it had already trickled into my liver then, maybe it was just circulating in my blood, who knows? When my largest tumor in my liver was biopsied this fall, the sample showed markers that indicated it was indeed breast cancer. Anyway, what I have now is liver metastasis, and that makes me Stage IV. Stage IV doesn't always mean terminal; it means that it has proven itself to be aggressive enough to leap to other organs and grow. It is believed to be everywhere, just driving through the neighborhood, assessing curb appeal and looking for open houses.

As such, a liver transplant isn't an option. Such a surgery would compromise my health (and take a liver from someone who really needs only a liver) only to have the cancer either pop up there again Whac-A-Mole style or grow somewhere else, requiring chemotherapy that would be even more debilitating now with an implanted liver. There's no cutting it out either since the organ is pretty much shot through with it. Even the larger tumors are confluent, meaning they're sort of connected to one another. The only option is to use two chemotherapies -- one that keeps new blood vessels from forming and the other that keeps fast-growing cells from dividing -- to kill these pieces of shit.

Chemotherapy doesn't make me vomit. There are some chemos that are more emetogenic (meaning they will make you puke) and I was on those four years ago, but I was given the antiemetic big guns for starters and if those didn't work, there were more. I never puked or even felt nauseated beyond what could be treated with a glass of ginger ale.

What I am being treated with now does, however, make me feel shitty in other ways. Over six months, I've had mouth sores, an infected parotid gland, daily bloody noses, a tongue that can't taste, fingertips that feel like nonstop pins-and-needles, and fungal infections in my toenails and fingernails. There's loss of hair (everywhere), loss of appetite, loss of memory, loss of muscle mass, loss of hormonal function, loss of menses, loss of libido, and loss of emotion. I know all you pretty young things out there think not having a period is a blessing, but after two pregnancies preceded by being on the Pill, I became attuned to the incredible ebb and flow of natural hormonal tides and how they affected my personality, productivity, creativity, and interest in the opposite sex. I'll take a dumb ol' period to get that back. Meanwhile, I am an emotionless cyborg, full of implanted devices from tip to tail and no interest in the human basic needs beyond sleep.

What having chemo feels like is similar to a day-old flu. When I get home on Tuesdays, the Benadryl has started to wear off and I'm ramped up from the steroids, but I just want to lie down because I start to have body aches, a headache, and just that general fluish miasma of yuck. Then I can't sleep because DECADRON! When I finally get up on Wednesday, my face is all swollen, hot and red and I have a sore throat. Thursday is better and Friday is better still, but the fatigue is cumulative. My heart rate is elevated very easily so I wear out quickly. I usually try to exercise on Monday, but being on the elliptical at half my normal resistance at my typical speed means my heart rate goes up to 182. Get why I'm tired all the damn time?

I do not know if/when I will be done with chemo. I will continue to be on chemo until there is No Evidence of Cancer (or NED). I have a CT scan and a bone scan every three cycles to see how things are cooking in there and if anything is popping up elsewhere. A cycle, for me, is Avastin and Taxol on Days 1 and 15, just Taxol on Day 8, and then a week off. Today I am at Cycle 6/Day 9 so I will plan my scans over my week off in two weeks. Today is the day I have a red bloated face, much different than the smiling and freshly shorn Cycle 1 me on my Facebook Profile Pic.

Okay, that was a sufficiently lengthy post to get you up to speed. Time to force-feed myself water and close my eyes... Spring is coming!

earth, sun, moon

here's a meme i snagged from jamie jamerkins.

directions: set your ipod to shuffle and click to the next track to answer the questions below. i've taken the liberty of locating the lyrics, or sample of the track when an instrumental is used, and linking them to the title. to read or listen, click the track title. i've also given my guess as to a meaning behind the track. glad that ol' english degree is being put to some use... extracting meaning from song lyrics... for a blog.


1. what would describe your personality?
"there must be an angel (playing with my heart)" -- eurythmics
translation: thrown and overblown with bliss isn't a bad personality to have.

2. what do you like in a guy/girl?
"summer here kids"-- grandaddy
translation: all the world loves a stick in the mud.

3. how do you feel today?
"all countries" -- tristeza
translation: mellow, purposeful, chugging along

4. what’s your life’s purpose?
"jump in the river" -- sinead o'connor
translation: just do it full force and eff everybody else!

5. what is your motto?
"eros' entropic tundra" -- of montreal
translation: no one loves you as much as you love them... or something.

6. what do your friends think of you?
"day o" -- raffi
translation: let's work hard and get outta here! seems apt given that i see most of my friends in a work setting.

7. what do you think of your parents?
"don't be afraid" -- aaron hall
translation: egads! i prefer not to think of my parents that way, but i suppose this, at one time, was probably quite fitting.

8. what do you think about very often?
"pelican narrows" -- caribou
translation: uhhh... pelicans? don't know -- it's an instrumental.

9. what do you think of your best friend?
"neutral"-- eliot lipp
translation: deep affection + rabid frustration = neutral?

10. what do you think of the person you like?
"royksopp's night out" -- royksopp
translation: these damned instrumentals...

11. what is your life story?
"iron man" -- the bad plus
translation: an elegant interpretation of a story about someone cast out from society

12. what do you want to be when you grow up?
"for the dishwasher" -- grandaddy
translation: a disgruntled, low-wage worker. neat.

13. what do you think when you see the person you like?
"minor detail" -- sondre lerche & the faces down quartet
translation: fear of losing someone so incredible? yeah, i get that.

14. what do your parents think of you?
"silverfuck" -- smashing pumpkins
translation: a heartless, heartbreaking manipulator? again, neato.

15. what will be played at your funeral?
"picture this" -- the beastie boys
translation: she lived life seeking the answers to questions no one else wanted the answers to... or something.

16.what is your hobby/interest?
"uptown" -- aya
translation: dance and think about loved ones. okay, i'll give you that.

17. what is your biggest secret?
"brush your teeth" -- raffi
translation: yes, this is my secret for getting otto to let me brush his teeth. i actually sing it to him every day as i scrub the moss from his chiclets.

18. what do you think of your friends?
"k (feat alison jear)" -- layo & bushwacka!
translation: no track available to hear. lyrics? uh... sun? some moaning and screaming? um... i have no idea. damned instrumentals.

19. what should you post this as?
"earth, sun, moon" -- love and rockets