One-Eighty

December 15th 2011– January 1st 2012

2012-02-22T18:34:00.001-08:00

December 15th 2011– January 1st 2012 (Orlando, FL)

December 15th

Today I have an MRI spectroscopy to go through, followed by an appointment with Dr. Hercules. Needless to say, I am petrified. The inflammation around the cyst area should have calmed down enough to see how well radiation has treated the tumor remnants. A nauseating permanent rock settles into the pit of my stomach as I try to lay still on the MRI table and get through the test without moving.

Juliette is working until my appointment with Dr. Hercules, and comes over to Neuro Imaging in Winter Park to pick me up. After obtaining a copy of the MRI, we head in silence to the MD Anderson Cancer Center. Dr. Hercules’ nurse hasn’t changed after all these months: a kind-hearted Latino woman who calls me “sweetie” as she weighs me, takes my vital signs, and asks about any new symptoms or changes I might’ve experienced since my last visit. I hand over the MRI disk with trembling hands.

“Thank you,” she says. “I will load it up in the computer so Dr. Hercules can take a look at it. It shouldn’t be too long.”

She departs from the room. I cross my legs, fidgeting in spite of myself. Christmas is in ten days, and there’s only one thing on my wish list: clean MRI scans from now on.

Soon enough Dr. Hercules walks into the waiting room. He always has a smile on his face when he sees us. Today would not be the day for an exception to occur.

Actually, today his smile is broader than usual.

“Great news,” he announces. “Your scan is perfectly clean.”

I am instantly relieved but still eye him skeptically. “What do you mean by ‘clean’?”

“I mean there is no pathologic enhancement along the medial margin compared to your prior MRI, nor is there any significant interval change in abnormal white matter. The cyst shrank a bit too.”

Slowly I nod my head, trying to grasp this news. “So what does this mean, exactly?”

I think Dr. Hercules understands where I’m going with this. “A clean MRI is obviously the first step to being cancer-free,” he says. “Some doctors like to wait a certain amount of time before declaring a tumor is in remission; others go by whether the patient is still undergoing treatment such as chemo.”

I know I will be doing chemo for a while to eradicate any microscopic cancer cells due to the astrocytomic nature of the tumor. Juliette once described the tumor as a spider (with less legs). The body was entirely removed but small ends of the legs might’ve been left behind– hence the necessary chemo. We have also talked about adding Xeloda to the Temodar I’m taking– another chemo agent which is usually used for brain mets (cancer that has metastasized to the brain from other parts of the body) but further cytology analysis of my tumor has indicated I could respond very positively to Xeloda.

A while ago, I would’ve predicted that hearing news of a first clean scan would make me jump with joy. Today I am relieved, yes; but not overjoyed. The truth is, I shouldn’t have gone through cancer to begin with so I can’t be perfectly happy. Besides, the fight isn’t over. I think only once the tumor is officially declared to be in remission, I will allow myself the right to purchase an expensive bottle of Veuve Clicquot champagne and celebrate in style.

Still though– a first clean scan is very promising and we leave the office with smiles on our faces.

In the car, on the drive back to Winter Park, Juliette and I go over what I did to reach this milestone. 1) Timing was crucial; we scheduled everything quickly and efficiently, including the initial surgery and the start of radiation 2) severe diet changes– eliminating all refined sugars and carbs and eating lots of anti-oxidants (except during radiation, which could actually repair cell damage– the opposite of the goals of radiation) 3) exercise, exercise, exercise, even when I wanted to crawl in a hole and die 4) adding vitamins and supplements to my diet, again ignoring the ones high in anti-oxidants during radiation and finally, but as equally important 5) keeping a positive attitude. There were definitely days I wallowed in self-pity but most of the time, I still laughed with the doctors and made jokes all the time. I also never stopped wearing the pink pumps. I think it’s because I know deep down I will pull through no matter what.

December 16th – December 24th 2011

The next few days are interesting, to say the least; my relationship with Ian fluctuates from great to bad as we have fabulous dates (such as going Christmas shopping together at the Mall at Millenia, walking around Winter Park with coffee, or going to see a production of Charles Dickens’ A Christmas Carol) to horrible ones (sitting at a restaurant called Spice on Park Ave., watching him answer an email for fifteen minutes.) Incidentally, his mole biopsy has returned– and ironically enough, he was bordering a diagnosis of melanoma, otherwise known as skin cancer. To be on the safe side, the dermatologist even had to send samples to another doctor to be sure of the pathology results.

“You saved his life,” my dermatologist announces during one of my mole check-ups following this news. (Turns out a mole I removed a year ago has grown back and needs to be biopsied again.) “I heard you forced him to make this appointment. He was this close to getting skin cancer. It would’ve been too late had he waited any longer– and depending on the cancer stage, his prognostic might not have been very good. Skin cancer can rapidly spread to important organs, other parts of the skin, as well as lymph nodes.”

I don’t think Ian grasps the severity of the situation because when I suggest perhaps using sunscreen from now on, he seems to be more worried about the fact his back is now permanently scarred. Nor does he ever thank me.

Later Juliette and I discuss this. “You did save his life,” she declares. “I read his pathology report. Ian is a very lucky guy.” She pauses. “Don’t you think it’s a tad ironic he didn’t consider your cancer diagnosis a deal-breaker when you two first started dating– and now because of you, he gets spared from getting skin cancer?”

Irony seems to define my life these days. On my infamous list of Things to Do in My Life, which was written with my dearest friend Sir Eryk of Nielsen at 3 am in the Morse Hall building on the UNH campus, Save a person’s life is listed somewhere in between seeing the seven wonders of the world and going skydiving.

Looks like I can finally check that one off.

December 26th 2011

Today Juliette, Mark, Ian and I decide to spend the day at Cocoa Beach and have a bit of fun. After an hour-drive, we have lunch at a café by the beach, enjoy a couple of drinks, explore the boutiques around the area and finally end up right in front of the ocean when darkness settles into the sky.

I love watching the ocean at night; the perpetual movement of water splashing the shore, the cool sand that slips through your toes and fingers, the waves eternally bound to a cycle dictated by the movement of the Moon around the Earth, the smell of salt that permeates the air; I could stare at the ocean all night. This time, however, I am staring at Juliette and Mark. Like two newlyweds, they are laughing, flirting and running on the beach ahead of us. Mark picks up Juliette and spins her around. A memory of Ian and I flirtatiously playing tennis a long time ago comes to my mind.

I turn to him, motioning to Juliette and Mark. “That used to be us.”

There are no other words that can be spoken. The relationship is dead and I no longer strive to rekindle it. No more fake fairy tale, no more patiently waiting for Ian to change, no more time-wasting talks, no more chances. Back in Orlando, we finally break it off like we should have a long time ago. That day I ignore all phone calls and text messages from him, and only send him one email requesting he return my novel’s manuscript– which has sat untouched in his apartment collecting dust during the past few months.

On January 1st 2012, I receive one last text from him: Happy New Year. I love you.

Delete. Time for a fresh start. Time to find true love.

November 16th – November 17th 2011

2012-02-22T12:29:00.000-08:00

November 16^th – November 17^th 2011 (Orlando, FL)

November 16^th

It’s crunch time here in Winter Park. The fundraiser is being held tomorrow at Urban ReThink in the district of Thornton Park. One of my best friends Suzanne has taken time off work and bought a plane ticket to fly down here from SC; two other great friends of mine, Mandy and William, have driven for hours and hours to make it here, morally support me and be of whatever help they can– in spite of their extremely busy schedules. Other friends I haven’t seen in a long time, Aaron and his sister Audrey, a charming girl with whom I spent some time in Venice, Italy, have also driven up here from Tampa. Leela, the ER doctor who happened to be there when I first met Ian at Luma’s, has also volunteered her time and help. Jess keeps on collecting more and more gifts from restaurants and other boutiques; cases of wine and beer are being donated for the evening, as well as enough sushi for 250 people from Shari Sushi– the sushi joint located right next door to Urban ReThink. To make things easier, we’ve split tasks and assigned responsibilities to everyone. Tomorrow evening William will be the DJ; Aaron will be the MC; Suzanne will take care of the silent art auction; Jess will play the part of hostess; and everyone else will be selling raffle tickets behind booths, which will be divided into three price categories depending on the prize value.

This is the first time anyone has ever thrown a fundraiser so people are running around a little frantically.

Suzanne, Leela and I decide to walk around Winter Park that afternoon, collect more donations, and put up flyers advertising the event in store windows with the owners' permissions. It’s pretty much a fifty-fifty gamble when you go into a store with the intentions of asking for a donation of some kind. The moment that stands out in my head to this day is walking into John Craig– a high-end men’s clothing store with tailoring customized service on Park Ave. We ask to speak to the owner, an older man probably in his early sixties, hand over the fundraiser flyer to him and ask if he’d be willing to contribute to the event. The man glances at the flyer, which Mark has designed featuring a large picture of me, along with a bullet-proof summary of the event.

“How is she doing?” the man asks.

I think we all pause there for a second. Finally I speak up. “I’m doing great, thank you.”

The man looks up in shock. “Is this you?” I nod and try to smile. This seems to somehow inspire him. “Well– I can definitely donate something then. Hang on.”

The owner goes over to the cash register and hands us a $250 gift card to be used at his store– pretty amazing when you think about how generous some strangers can be! Overall, we found that more men than women recognized my picture from the flyer and actually made donations. Women in general usually blamed the poor economy of the country for their lack of contribution– although there were definitely some exceptions to this.

Everyone is looking forward to tomorrow, but I know I’ll be nervous. I mean, who can say they’ve ever had a fundraiser thrown in their honor before?

November 17^th 2011 (Orlando, FL)

The day of the fundraiser, Suzanne and I are in charge of decorating Urban ReThink, as well as making a huge sign with balloons right outside announcing the details of the events to attract a bigger crowd. The entire day is spent with everyone running around and taking care of last-minute details, setting up the raffle tables, the silent art auction room, the food and wine counters and making sure the sound system is up and running. At around 6 pm, we are all exhausted but there is no time for rest. I’ve brought my evening attire with me and go change at Suzanne’s hotel, located only a few minutes away from the big event. We both step outside fresh, breezy, properly attired in cocktail dresses and more than ready to have a good time.

The evening is a fabulous success; music is hopping, curious strangers are stopping by, and people everywhere are introducing themselves to me and saying how much they are enjoying reading my blog– including a lot of talented artists who are contributing their work to the event. It’s bizarre how everyone knows so much about me while I know so little about them. There are extracts of my blog on coffee tables scattered everywhere and I observe people engrossed in their reading– kind of a strange experience as I stand a few feet away and watch their reactions. The people here are amazing and I feel lucky to be meeting them. I can tell I’m finally on my way to building my own social circle in Florida. I haven’t been here that long. I do have family here but an independent network of friends is also important to have in my opinion.

Aaron, a bald and scary-looking guy with the kindest heart ever, does his MC job extremely well, encouraging people to buy raffle tickets throughout the night and embarrassing me more than once like he’s supposed to; William is doing a fantastic job as the DJ; Suzanne is running the silent art auction wonderfully, while Mandy and Mark are selling off raffle tickets like 5-cent pieces of delicious candy. Jessica’s friends have volunteered to be bartenders for the evening and pour wine and beer to the guests. Not only is the evening a ton of fun but a very successful one too– I think we end up making about $3000 or so? Thank you again Jessica for organizing such a great night!

Ian is also present at the event, as we’ve kind of worked on things since that horrible night at Hillstone’s; I can tell he’s trying to balance his work and personal life a little more, and I’m also trying to be more understanding of his hectic schedule. He has been acting more like a gentleman as of lately. He’s also supposed to hire someone to work below him in January of next year, which should cut down on his work a lot and hopefully make him a more attentive boyfriend. I guess I’m crossing my fingers till then. We shall see. I also don’t like drama and pretend everything is fine and dandy at the fundraiser. Besides, everyone wants to meet the “British Prince.” The fact he was also willing to date me despite my diagnosis seems to have forever formed a good opinion of him in my family’s mind. They keep telling me he really cares for me and that I need to be more patient because nobody is perfect. As Juliette puts it, “Would you rather have a man who brings you flowers when you’re sick, or a man who stands besides you through cancer?” My typical answer is usually muttered underneath my breath: “Can’t I have both?”

When I say good-bye to Suzanne that evening, we both start to cry. I’m guessing these tears are a mixture of the horrible reality of the situation (as you can guess, she is still in shock with the diagnosis, as I still am– I don't think I'll ever really get used to it) and the thought of being separated for who-knows-how-long. It’s strange– we are actually closer now that I’m not living in SC anymore.

“Hang in there,” she says. “You’re so strong. You really are an inspiration. I don’t know how you’re going through this the way you are. If there’s anything I can do for you– please let me know.”

She gives me a beautiful silver necklace, simple yet elegant and engraved with the following words:

If you can imagine it, you can achieve it.

If you can dream it, you can become it.

November 11th 2011

2012-02-20T22:00:00.005-08:00

November 11^th 2011 (Orlando, FL)

I’ve finally started to feel better. I can walk in a straight line without getting light-headed and stay upright without needing to lay down right away. There are a few flower bouquets now aligned on my dresser– one from Mom and the other two from a couple of guy friends. I’ve happened to mention to Ian that lilacs are my favorite flowers but any sort of bouquet from him is yet to join the others in my room. Mom flew in yesterday, and Mark picked her up at the airport and then drove straight to the dermatologist where I was getting a pre-malignant mole sliced off my back. We had sushi for lunch, did a bit of shopping at the outlet malls, then cooked pierogies for dinner (traditional Russian dumplings stuffed with potatoes and cheese). Overall we had a great time. Tonight I have arranged for Mark, Juliette, Mom, Ian and I to have dinner at Hillstone’s– that chic restaurant by Lake Killarney.

This is the first time I am planning to go out since the second surgery and Ian has seen me in nothing but messy bedhair, no make-up, tank-tops and pajamas for about two weeks. So tonight I will be gorgeous. I pick an especially sexy and classy dress to wear for the evening and spend about an hour arranging every strand of hair, eyelash and eye shadow dust. If Ian notices when he comes knocking at the door, he certainly doesn’t say it.

I still smile. “Hi Handsome.”

“Hey.”

I expect a kiss, a compliment, anything really– but all I can do is step aside as he is obviously trying to enter the doorway. Suddenly I realize it could’ve taken me four hours or four minutes to get ready and it wouldn’t have made a difference. I bite my lower lip and stay courteous, make the necessary introductions to Mom and we take two separate cars to drive to Hillstone’s, which is only a couple of minutes from home.

Needless to say my mood has already disintegrated in the past fifteen minutes but I’m still trying to toss Ian’s typical lack of attention and of courting style to the back of my head in order to have a good time this evening. I’ve already told Mom this boyfriend was a potential future husband (this was said about a month ago; as Juliette has recently asked me if I would marry Ian today, the answer was that I wasn’t sure anymore because of recent behavior) but their meeting still means a lot to me. Ian parks the car, gets out, and proceeds to head to the entrance of the restaurant. I curse underneath my breath, trying to open the door and struggling to get out of the car in that short cocktail dress and those four-inch heels. I’m pretty sure I flash a dozen people in the process– all the while grabbing my purse, trying not to fall to the ground and standing upright with all due dignity. I slam the car door behind me. I hear Ian, who’s already began walking towards the restaurant entrance, lock the car doors. From the corner of eye, I observe Mark gallantly open his car door for Juliette, helping both her and Mom out like a true gentleman.

Perhaps, in retrospect, this image was the drop of water that made the glass spill.

Meanwhile Ian has continued to walk towards the entrance and left me behind like a speck in the dust. Finally he turns around.

By then my mood has become foul. “Take my hand!” I gnarl. Which is worse– I don’t get escorted to the restaurant by my own boyfriend or he isn’t affectionate enough to care? At these words Ian holds out his hand but I don’t think I even want to take it at this point. A repeat of our “talk” post-second-surgery has already occurred a few times since I got back to Orlando. Ian keeps telling me I need to talk to him if something is wrong. Something is definitely wrong, but the more I repeat myself like some broken record, the more these issues get ignored– even though he also sounds like a broken record and keeps making promises to cater his behavior to my needs. Calmly sitting down like adults and trying to get my point across in words has so far accomplished nothing. Nothing is changing and now part of thinks nothing will ever change. I need someone with better manners. I need someone who is more attentive. I need someone much more romantic than he is, and who wouldn’t walk away from me in the parking lot of a restaurant. What do I need to do? Be childish and throw a fit to get my point across? Scream instead of handling the situation with maturity like I thought we’d been doing? What would really get his attention and cause him to actually change– if such a thing is possible? If he doesn’t want to change, when why doesn’t he just say so and call off the relationship?

Maybe I should dump his British manner-less ass.

As we sit down in a booth, I find myself ducking behind the menu. I’ve recognized the waitress we had last time we were here to celebrate the end of my radiation treatment. We were there with two Canadian friends, making it a party of six people– hence an obligatory 18% gratuity had been added to the check. Ian, being from the UK, does not agree with the policy of tipping. I don’t really think it’s up to him to re-evaluate the social norms of America. Here we tip. In Britain we don’t. If you don’t like it– don’t eat out, or don’t come to America. Period. In the end, Ian demanded to speak to the manager and made a bit of a scene. I don’t know how our two Canadian friends felt about it, but Juliette, Mark and I sat there beyond mortification, reassuring the manager the service had been more than fine.

Thankfully the waitress passes by our table and approaches another booth not too far from ours. To this day I still ask myself whether we got sat in her section and she simply asked a colleague to take care of us instead. Back in my college/waitressing days, that’s what I would’ve done anyways.

Needless to say, I don’t have much fun during dinner. Everyone can tell I’m pissed off at Ian. Even Juliette tells me at one point to “get over whatever is bothering me so we can all enjoy ourselves.” I can’t enjoy myself, sorry. Honestly, I doubt she would’ve put up with half the stuff that’s been going on with Ian. I slightly motion to him and tell Juliette we are back at Square One. Nothing is changing, and I don’t think anything will ever change.

“He says you constantly put him down,” she points out.

“How?”

At this point I am getting angry. Ian keeps telling me we need to ‘talk’ to make a relationship work; if something is bothering me, then I should speak out, which I have been doing. But apparently if I talk, I ‘put him down’ even when I make an effort to put a positive spin on things, ie: “I love it when you do this, and it would also mean a lot to me if x, y, z…”

“How?” I repeat. “How do I put him down? By asking him to open the fucking car door for me? By calling him ‘sexy’ and ‘handsome’ all the time and becoming impatient that he hardly ever compliments me? By asking him to tell me he loves me instead of just stating it back like a robot?” Juliette’s expression has softened, and she tries to interrupt me but I don’t let her speak. “Or by nagging him to make an appointment with the dermatologist because he might have skin cancer, judging from the look of that mole?”

Ian has had this god-awful mole on his back for as long as I’ve known him. I bet anything it’s abnormal and have been harassing him to get to the dermatologist since September. It’s even led to a couple of arguments, all sounding like something along the lines of:

“Make that appointment NOW, timing is crucial!”

“I’m fine. I don’t need to see a doctor. I’m perfectly healthy– just look at me.”

“Yeah– and just look at me. I’m perfectly healthy too, right?”

If anyone understands that timing can be crucial in the medical field, it’s certainly me. The fact Ian has taken his sweet time to deal with this and has been completely unconcerned is a tad irritating. From what I’ve gathered, he’s adopted somewhat of an ostrich-sticking-its-head-into-the-sand approach when it comes to doing routine medical check-ups or heading to the doctor when necessary, ie: huge evidently abnormal mole is growing on back, might be cancerous, need to get it checked out ASAP. Since September, I’ve nagged him and re-nagged him about it until he’s finally agreed to go to the dermatologist. Samples were taken, and not just from that one suspicious mole– but from two others as well. Now we are waiting for pathology results.

I get up to use the bathroom. By the time I make it there, tears are streaming down my cheeks. I’m not sure what else I can do to get my point across to Ian– how relationships are supposed to be a balance between giving and receiving– and the idea that my British Prince has morphed into the Dark Evil Lord in my fairy tale is not a pleasant thought. A statement of his is now replaying itself in my mind:

I haven’t had that many girlfriends in the UK. I was working all the time and never really called when I said I would– or took the time to take them out. Eventually they all got tired of it and broke up with me.

I'm sure these girls and I would certainly have a lot to talk about.

Mom soon follows me into the restroom and patiently listens to me (so does another lady in one of the stalls, for that matter– but I don’t give a damn.) For some reason everyone seems to think highly of Ian and advise me to keep on giving him chances. It’s almost gotten to the point where I feel he steps up his game when we’re around others and that he’s more concerned about what they think of him– as opposed to me. I guess the statement that “nobody really knows what happens behind closed doors” is true– unless you blog about it online, of course.

“Perhaps you should try to be more patient,” Mom adds. “No one is perfect.”

“I’m not asking for perfection.”

I hear Juliette’s words from a couple of weeks ago: Little things go a long way. I think that in the context of a healthy relationship, she is definitely right. I’m not asking for the Moon. I’m asking for small things that require very little effort but would mean a lot to me and which I would never take for granted. Open the car door. Surprise me with a bouquet of my favorite flowers– especially after undergoing brain surgery and being bound in bed for two weeks. If my drink is empty, ask if I’d like a refill. And I’ll do the same in the context of whatever you want. After nicely asking Ian to be more gallant more than once, nothing has changed, while I stupidly find myself still approaching the relationship with 150% effort: making him sandwiches after his football practices, randomly texting him sweet messages during the day, letting him pick what he wants to watch on our TV, buying gingerale at the store– even though I never drink the stuff– and trying to keep romance afloat between us in a multitude of various ways.

Frankly, I am getting exhausted.

“If you think I’m going to lower my dating standards just because I have cancer– think again,” I state loudly to Mom. At this point the lady steps out of her bathroom stall, quickly apologizes, and disappears out of the restroom. “You know who I am, Mom. You're the one who raised me. I’m a strong girl. We have thick Russian blood, remember? I would rather be single than be stuck in a bad relationship– being bald or not.” Tears continue to flow. “He didn’t even tell me I looked beautiful tonight. And you know how long it took me to get ready– for him.”

I think this “compliment issue” has become a particularly touchy subject– probably because I still can’t look at my reflection in the mirror after taking a shower without wincing or feeling like a stranger is vacantly staring back at me. I want my hair back, and will never feel fully beautiful until it grows back.

Mom tries to calm me down, helps me get rid of the mascara streaking my cheeks, and we go back out there. Ian has evidently noticed something is off, and that I’m angry at him for some reason, but this is not the time nor the place to have this talk (for the nth time.) Finally we leave the restaurant. As we step outside, he asks Mark if I can ride home in their car instead of his.

So my date for the evening is apparently not even going to drive me home. Wow. What a blow in the face. At this point I don’t even care anymore. Holding my chin up high (now and always), I slip into my trenchcoat and walk off to the parking lot without a word. I will not give him the satisfaction of showing him he's hurt me once again.

“That was rude,” both my sister and mother comment once Ian leaves.

On the bright side of things, at least Mark gets the car door for me.

Back home, as I am crying sitting up on my bed, both hands curled around my knees, Mom enters my room looking onto me, her eyes softly lit up in a way that only a mother could look upon her daughter with.

“You’re still beautiful, Kat.” With an angry gesture, I rip the wig off my head and toss it across the room. It’s the first time my mother has seen me bald. “Yes,” she says. “Definitely still beautiful.”

October 30th – November 8th 2011

2012-02-16T21:13:00.001-08:00

October 30th – November 8th 2011 (Orlando, FL)

I spend the next ten days in bed, worthless, miserable and depressed; I can’t do much at all, for this second surgery has taken a much bigger physical toll on me than anyone had predicted. Every doctor assumed I would “instantly feel much better” after draining that stupid cyst, but I don’t think they factored in the repercussions of cutting my skull open once again. Since I’m unable to work, I am currently living off vacation donations (thank goodness I’ve saved some up for rainy days and thanks again everyone at Pacific Northwest National Laboratories– PNNL) as all I can literally do is lay around in bed restless, take Tylenol in an effort to subdue my pounding headaches, and try to sleep. Sleep. Sleep. Sleep. Unfortunately, the fact I am on steroids to reduce inflammation around the cyst area has rendered sleeping impossible. I get up at crazy hours in the night, haunting the house like some lost ghost who can’t find rest and inner peace no matter where she looks. Walking is also difficult: I’ve lost my sense of balance and get light-headed very easily– symptoms I was feeling before the second surgery but not as badly as now. It’s hard to walk in a straight line, and “no, I’m haven’t been officing at all, Mr. Drinker.” I know in the long run draining the cyst was essential but as of now, it’s made things a hundred times worse. I am also a bit cranky about the fact that my doctors seem to have downplayed how invasive this second surgery would be– just like how Dr. Orville, my neurosurgeon, downplayed how much hair he would shave off my head to open my skull up the first time around. Needless to say, our Halloween plans have crumpled up, much to my disappointment (Halloween is my favorite holiday of the year.) Our flapper and gangster costumes have been properly stocked in the attic. Oh well. There’s always next year. I make it through the days thinking things can only get better from here on out but it’s hard to keep a positive attitude wallowing in pain and confined to my bed. I just want to get better. I just want my life to get back on track. Part of me thinks that insomnia is taking a severe toll on the progress of my recovery; if I could perhaps pass out and sleep for twelve hours straight for a few days, I would have to start feeling better, right? However the Ambien that Dr. Hercules, my local neuro-oncologist in Orlando, has prescribed seems to be no match for Dexamethasone (the *&^&%^%$$# steroids.) Mom is taking time off work and flying in for the week-end. I hope to have recovered enough by then to spend some quality time with her.

November 8th 2011

Jess, the nice girl who emailed me a while back saying she was engrossed in reading my blog (see entry dated August 23rd 2011), has managed to reserve the galleries of Urban ReThink in downtown Orlando to host a fundraiser in my honor on November 17th. It’s a little over a week away and there’s still a lot of work to do. Juliette sets up a meeting with her at Panera’s in Winter Park. At the last minute, as I am feeling just a tad better than yesterday, I decide to leave my prison, step outside and join them in broad daylight.

Jess is a pretty, smart, cute and extremely talented photographer (check out her page at http://society6.com/Love2Snap) who is easy to talk to and obviously has a heart of gold– seeing how she is volunteering her time and effort to help out a complete stranger like me. We briefly go over the details of the evening she has planned out for my benefit. She is in the mist of collecting donations– mostly gift cards and free services from a wide variety of local spas, stores and restaurants so we can raffle off prizes on the big night. Additionally, a silent art auction will be held simultaneously, selling donated work from local artists and all financial proceeds will go towards my brain cancer fund. Jess has evidently been working hard, and I feel bad being as useless as I’ve been, locked in my bedroom in recovery mode. Stupid surgery. I make a promise to get moving on things as soon as I, well, am able to start walking around Winter Park to collect more donations, as well as advertise the event.

Incidentally, PNNL on the west coast is holding a fundraising Thanksgiving dinner in my honor on November 17th as well– a dinner I sure wish I could attend and whose proceeds will also go towards paying off balances from medical bills, and clinical trials and drugs not covered by my insurance. Cheryl, the sweetest administrative assistant at PNNL, has sewn together the most beautiful quilt I have ever seen to raffle off as well. It brings tears to my eyes to think of how hard everyone is trying to help– people I didn’t even know before the diagnosis, for instance, are writing me all the time to see how I’m doing. I have friends who are planning on driving hours and hours or buying expensive plane tickets and taking time off work to make it to the benefit next week.

That evening, Juliette, Mark and I decide to watch The IT Crowd– a hilarious British TV show of which we are huge fans and which depicts the misadventures of the IT department working at some evil corporation. Ian comes over after work. I don’t want him to think this relationship is going to only be about doctors, surgeries and being sick, so I try to smile and laugh even though I feel like absolute crap and would like to remain horizontal. As usual I feed him (if you consider cheese, crackers, a grilled sandwich and soup to qualify as “dinner.”) I make myself something to eat at the same time, just as I catch a strange glance from Juliette.

“Shouldn’t he be doing this for you– considering you’re the one who feels like crap?” she mutters in French.

I shrug my shoulders. It’s been a little over a week since Ian and I had our so-called serious talk after the surgery. In the following days, I noticed a distinct effort from his part to be a better boyfriend, but gradually things have returned to where they were initially. The Prince Charming is once again slowly losing his charm.

Ian begins to ask Mark questions about car insurance– I can tell Mark isn’t really up for talking and is enjoying the show, as we all are, but I guess Ian isn’t getting the point that we are engrossed in watching The IT Crowd. In fact he asks to borrow my laptop and starts doing online research after he’s done eating while inquiring to Mark about more insurance terms. I don’t want to embarrass Ian and point out he’s being a little rude– so instead I pause the show, hoping it’ll provide the necessary hint.

When the boring car insurance discussion is finally over, I press the PLAY button on the remote to resume The IT Crowd. After a few seconds, Ian speaks out again. “I hate this show. Let’s find something else to watch.”

October 29th 2011

2012-02-14T21:01:00.000-08:00

October 29th 2011 (Baltimore, MD)

The night I spend this time around is worse than the one I spent in the Intensive Care Unit after my first surgery. As my roommate– the dementia patient– keeps getting up, triggering the entire hospital staff to come barging and yelling into our room, Juliette and I finally snap and call the head nurse. It hurts to have my eyes open, so I keep them shut until I hear a few steps coming our way. I discern a shadow through the measly white curtains– the “partition” with the other patient’s “sleeping quarters” that completely redefines the word privacy.

The shadow speaks out. “I’m the head nurse– you asked to see me?”

“This is not working,” I snarl in rage from my bed. “I just had brain surgery for crying out loud. I need to get some rest. Can you please put me in a room with other patients who are actually sleeping?”

“I’m sorry,” the head nurse responds, slowly morphing into Nurse Ratched from One Flew Over the Cuckoo’s Nest. “There are no other beds available.”

“So there’s nobody else who just wants to rest and recover in this damn hospital?”

“Couldn’t you have put two dementia patients together in the same room?” Juliette barks from her sleeping chair. “Wouldn’t that have made more sense?”

Nurse Ratched leaves without us giving an answer.

I let a swearword slip out of my mouth and glance over to Juliette. “Even if I still feel like crap I’m so getting discharged tomorrow. There’s absolutely no way I’m spending another night in this horrible place!”

Juliette turns over in her springy chair. Squeek. “Agreed. You’d probably get sicker here anyways. If you’re not well enough to fly tomorrow afternoon, we’ll just get a hotel.”

I look at the clock on the wall straight ahead, ticking so damn slowly. I can see what time it is because that horrible nurse, Ratched-Whatever, has stupidly left the door open and light from the hallway is infiltrating our room. Tick. Tick. Tick. Seconds aren't going any faster, and it’s only about 10:30 pm.

We gather throughout the night, from listening to the dementia patient’s neuro exams, that she is an old woman born in 1930– which might be the only thing she actually seems to remember. 1930? I re-arrange the blindfold over my eyes. This means she was in her twenties during the 1950’s. To think of all the history she’s experienced leaves me pondering about the kind of life she’s had and why she is today dying alone in a hospital. It is sad to think that no family member is spending the night with her, while my own Rabid Dog is uncomfortably cuddled up in a squeaky chair right next to me.

I shut my eyes and try to sleep. Soon enough, another nurse comes in to take my vital signs. I glance at the clock– surely a couple of hours have passed? I realize with horror that it’s not even 11:00 pm yet.

“You sleeping?” I ask Juliette.

I hear a grunt. “Are you joking?”

“Remember that passage in Miracle of the Andes– when that avalanche buried the plane fuselage in the middle of the night, trapping the survivors inside for a couple of days?”

“Yeah. They were freezing and trying to sleep in snow, praying for morning to come.” I hear a slight smirk. “Kind of like us,” Juliette comments.

Yes, but in comparison our situation now appears a lot easier to handle: a bunch of young men freezing and trapped inside a crashed plane fuselage full of snow, eventually resorting to eating the flesh of the dead friends buried with them– versus being trapped in a hospital room, unable to sleep because of the ever-going noise, a headache seemingly drilling a hole into the right side of my brain, and a crazy patient next to us who can’t remember what happened five minutes ago. Perhaps we are lucky after all. To think of a much worse scenario than ours actually helps.

Several other nurses visit me in the middle of the night and take my vital signs. I inform each woman that I am getting discharged tomorrow (my neuro-oncologist Dr. Wilbur said it would only be a one-night hospital stay)– a statement that makes most of them raise an eyebrow.

“We’re going to need a copy of the post-op scan before we leave,” Juliette informs one of the nurses.

This is no laughing matter but she kind of giggles. “Yeah, I don’t even know how to do that.”

“What do you mean?”

“I don’t think it’s possible to get a copy of your cat scan so quickly.”

The incompetent staff at Johns Hopkins is beginning to drive me nuts. I raise my voice in sarcasm. “So what you’re saying is that the CAT scan I took a few hours ago has been obliterated from the computer downstairs?” The nurse stares at me like she doesn’t know what sarcasm is, or the verb ‘to obliterate’ for that matter. I am rapidly losing the rest of my patience. “Well– it’s not really your problem, now, is it.”

In total I manage to get about two hours of sleep– interlaced with some delirious dreams exploring the theme of breaking out of the hospital because the staff won’t discharge me in the morning. In retrospect the dreams are kind of funny. In one of them, Juliette has to find a pair of scissors to undo the dressing on my head. She sticks a wig on me and insists I try to look “normal” (like I’m not a patient here) while walking down the hall and discussing how great our imaginary sick cousin is doing– the one we just apparently visited. We make it past security and escape the gloomy prison full of insane patients that Johns Hopkins has turned into.

In the morning I am in a less than cheerful mood. First of all, everything is taking forever to get done– even though I repeated a dozen times throughout the night to the nurses that Juliette and I had a flight to catch at 2 pm today. At this snail pace, we’ll never get to the airport on time. Second of all, thoughts of my relationship with Ian are haunting the back of my head. Something doesn’t seem quite right. I can’t stop thinking that if it were the other way around and the “love of my life” was undergoing a severe type of surgery, I would be by his bedside, worried out of my mind, comforting him and showing him how “being there for you” goes beyond the statement itself. Had he offered to come down to Baltimore with me, I would’ve ultimately said no because of the inconvenience of it all (such as taking time off his work, which has kept him extremely busy in the past couple of weeks.) Juliette, having earned both titles of Doctor and Rabid Dog, was definitely the right person to accompany me– but it would’ve still been nice to hear the offer come out of Ian’s mouth. If you need me– say the words and I’m there. Things have been a little different between us since I’ve moved back to FL. I feel a slight disconnect, but he keeps working like a fiend and I can’t blame him for trying to make it to the next “level” at work. I like ambition in a man– it’s sexy. I also don’t want to play the part of the nagging and whining girlfriend– you’re not spending time with me anymore, waaaaaaaa. So instead I encourage him and try to keep his stress level in check. I can only imagine how things would be if I were on the verge of defending my PhD– how little time I’d have, how stressed out I’d be, and how my boy-friend would temporarily tumble to the bottom of my priority list.

Still though. “I can’t recall the last time Ian said he loved me– without me saying it first,” I add, laying back down in the hospital bed. The ceiling is cracked and discolored, and past the window the dirty buildings of Baltimore are rising in the distance.

“His mind is obviously elsewhere,” Juliette softly points out. “He’s working crazy hours– week-ends included. You know he still loves you.”

“It’d be nice to hear it more often.” I pause. “Especially before undergoing some scary surgery.”

A nurse comes in to give me a dose of Keppra. Juliette and I both remind her I need to get discharged as the nurse affirms she’s “working on things” and leaves the room. Juliette yawns from her chair. Like me, she’s spent a terrible night and hasn’t gotten much sleep.

“Also– I need a gentleman,” I ramble on. “Someone who’s attentive, courteous and gallant. Ian doesn’t even open car doors for me.”

Juliette looks surprised. “He doesn’t?”

“No. Mark always opens the door for you. Hell– for me as well, and I’m not even the one dating him.”

“I had to ask one of my past boy-friends if he could start opening doors. Why don’t you just tell Ian it would mean a lot to you if he started behaving gallantly?” She goes on talking about her past relationships– how no one is perfect and we each have our faults. “Pick your battles. Figure out what’s really important, what can’t be compromised, and put a positive spin on things during ‘talks.’ Ask him if there’s anything else you could do for the relationship, and then you can bring up the door issue.” She smiles. “You always make him a sandwich when he comes over and stock the fridge with his favorite gingerale. That’s cute. I’m sure he appreciates it. Small things go a long way and don’t require much effort.” She eyes me skeptically. “Just don’t make any rash decisions until you’re off steroids,” she finally concludes.

Juliette knows how stubborn I am, and how I’m not usually that patient with my boyfriends. I also know deep down that a lack of gallantry and romance are a complete turn-off for me, and that these issues would bother me regardless of whether I were on steroids or not. However I decide to listen to my sister– she has spoken wise words. Things aren’t going to magically fall into place and if something isn’t right, I need to speak out. No one is perfect and relationships take work, provided both parties put in some time and effort and are willing to compromise.

Juliette is still looking at me as though she’s trying to read my mind. Finally she takes out her iPhone and proceeds to show me a series of text messages dating back from early October. The first one, sent from Ian to her, asks what kind of ring I would like, followed by a discussion of different diamond cuts and pictures.

“He really does love you,” she affirms once more. “Don’t give up so easily– this one has a lot of potential.”

This discussion of a ring does not shock me– as I’ve mentioned before, things with Ian have gotten serious pretty quickly. He’s already told me where he thought this relationship was heading and we appear to be a perfect fit for each other. I just wish I hadn’t needed this second surgery and that he wasn’t swamped by work. Stress in relationships is never a good thing.

Miraculously Juliette and I manage to leave the hospital on time, but not after she throws a fit– literally– and demands with a Cleopatra tone of voice that the staff bring discharge papers at once so I can sign them and make it to the airport on time. To this day I only have vague memories of sleeping on a bench like a homeless bum in front of the departing gate, waiting for the boarding call. After experiencing what is probably the worse plane ride of my life, drugged up on painkillers and anti-nausea medication, we finally make it back to Orlando. Ian comes over to the house. Like two adults, we go sit down in my room to talk. I’m exhausted and feeling emotional at this point but need to get some things off my chest. I try my best to speak without any tears, but without any success.

My voice trembles a bit and more doubts creep into my head. “Ian– you don’t have to do this. I already told you this was going to be hard. I’m going to be fine regardless of whether you’re here or not– so if you’re dating me because you feel sorry for me– don’t.”

Feeling beat up from the surgery and scared about the future, I’ve handed Ian another “get-out-of-jail-for-free” card. All he needs to do is grab it should he wish to bolt.

“You think this is what this is about?” he replies. “I already told you I’d stand beside you no matter what.” There is a small pause. “Don’t push me away,” he says more forcibly.

“Well what if we took things down a notch then? Made the relationship more casual? We don’t have to talk about buying houses on the lake, or rings, or whatever else–”

Ian stares at me blankly. “Why are you saying that?”

“Because if my future husband was having surgery, I would’ve been right beside him holding his hand. If we’re not there yet– we’re not there. Period. We don’t have to pretend that we are. Let’s just go out, have a good time, and live in the present.”

“What’s there?”

“You know– at that level of commitment.”

“But we are– aren’t we? This relationship isn’t just a walk in the park.” There is a small pause as I make sense of his words. “I’m almost forty. I’m sorry if work is taking all of my time right now, but I just don’t have that many more years to ‘make it.’ ”

I know what he means– buying a house, getting married, living a good life and retiring comfortably. Kids are a “maybe” at this point. I’ve never been the maternal type but then again, perhaps with the right man….

“Sorry about not calling you yesterday morning,” Ian continues. “I should’ve. There is no excuse for not doing that.”

“Sorry about yelling at you over the phone after waking up from surgery.”

We speak for a while about other small things– I mention that gallantry and romance are important to me and ask if there’s anything I can do for him. I hear Juliette’s voice echo in the back of my head– small things go a long way. She is right. Suddenly Ian and I are back on track. There is a lot of good potential here. Did I really expect a flawless relationship right from the start? Silly little me. Despite of how ill I feel because of the surgery, tonight I fall asleep with a smile on my face, thoughts of my handsome British Prince clouding my dreams.

October 28th 2011, part II

2012-02-08T16:48:00.000-08:00

October 28th 2011, part II (Baltimore, MD)

A voice speaks out to me. “Open your eyes.”
Things are blurry but I know exactly where I am. “Is it done?” I mumble.
“Yes.”
“Where’s Juliette?”
“Who?”
“My sister!”
“She’s asking for her sister,” the same voice speaks.
“Can you wiggle your toes?” another voice asks. I do as I am told. Someone grabs my left hand. “Squeeze.”
Easy as pie, unlike the first surgery. I catch a glimpse of Dr. Orville coming my way.
“The procedure went very well– there were no complications.” My head is wrapped in several layers of white bandages, and I do my best to nod. “I’m going to talk to your sister now.”
“Thank you, Dr. Orville.”
I soon pass out as the nurse injects some Fentanyl into my IV– a quick, strong, effective painkiller with soothing effects that unfortunately do not last very long. I hear another voice. This time it’s Juliette’s.
“I’m here. You ok?”
I open an eye to see Juliette standing on my left side. I grab her hand. I’m not ok. Here you are again laying down in a fucking hospital bed at Johns Hopkins in the post-op recovery area. I’m nauseous and in pain, but mostly it’s the emotional distress that is overwhelming me at this point. I am shaken up from having to face the reality of my situation all over again: you’ve been diagnosed with brain cancer. I had managed to get lost in the routine of receiving radiation every day to ignore this blunt fact– plus that one week spent in Orlando had been fun and distracting enough to allow me to live in a world where none of this was true.
And somehow– I don’t know how yet– I will have to find the strength to pick myself off the ground and bounce back from this second surgery, just like I did the first time around.
How?
The phone rings. Ian is calling Juliette to find out how the surgery went. I am pissed off– I expected more than some generic “good luck” text I received from him this morning. There are moments in life when a “I love you” phone call is in order, ie: before your supposed beloved one, the one you’ve discussed getting an engagement ring for numerous times, is about to have her skull opened. A small part of me now suspects that perhaps he can’t handle the severity of the situation. Another part of me is furious. I cut Juliette off mid-sentence and grab the phone from her hands.
“Your girlfriend just had BRAIN SURGERY and you didn’t call me this morning to tell me you loved me?” I scream into her iPhone. I see the nurses look at each other in shock– maybe because I’m giving hell to my boyfriend despite my physical state of being, or that I’m actually yelling in a hospital recovery room surrounded by patients who are too weak to even speak. I hear him fumbling something about sending a text. “I don’t care about your stupid texts, Ian!”
In tears I shove the phone back onto Juliette.
“Well, that’s one way of dealing with it,” she states as she raises an eyebrow. “You’re on steroids– you might be blowing things out of proportion. He did mention to me that he sent his text assuming you were being prepped for surgery.”
“Assumed? So he didn’t even try to talk to me? I don’t get a call or a voicemail?” There is a short silence. “Would you have expected a phone call from Mark?”
“Of course.”
“Well– there you go.”
Tears continue to flow but Juliette can tell they are no longer about Ian. I don’t want to be here. I just want to go home and live a happy, normal life.
“Everything is going to be fine,” she whispers to me. “Remember– it’s a bump in the road. Just a cyst that needed to be drained– not tumor re-growth.”
I’ve stopped caring. I can’t be strong right now. I can tell Juliette has come to this realization and is making an effort to show twice as much strength for the both of us. I lay there holding her hand in a delirious drugged-up state of mind, fervently wishing I was somewhere far far away from Johns Hopkins and that none of this was happening to me.
I fall asleep again. When I wake up Juliette is still right next to me holding my hand.
“They’re taking you to get a quick CT scan done of your head. How are you feeling?”
“Pretty damn awful.”
An hour later, the CT scan is completed and Juliette is more or less happy about the results– the cyst has been drained, but there is so much inflammation around the surgical area that it is hard to tell what the status of the tumor is. It also appears I will have to continue being on steroids for a while, eventually tapering off the dosage. Steroids must be slowly tapered off, for once you take them, your own body stops producing cortisol– a steroid hormone– and becomes dependent on the prescribed prednisone, dexamethasone, or whatever you are taking every day.
I ask to see my phone. Ian has tried calling a few times and has sent a couple of texts about wanting to “explain” why he didn’t call– explain what? This isn’t rocket science (or brain surgery for that matter). There are ten digits to a phone number. Dial them before the one you love goes under the knife. I quickly type back that I am sleeping, drugged-up, and will talk to him tomorrow. I don’t have the strength to deal with surgery and boyfriend troubles at the same time.
I am wheeled into my room for the night, which I must share with another patient– an elderly woman who apparently has dementia because after her family leaves, she keeps getting up in the middle of the night, setting her bed alarm off and sending a hoard of yelling nurses into the room every time. No doctor has thought to request I get own room like last time, even though I’ve been doing chemo and my immune system is probably compromised. Just like before, Juliette curls up in a chair next to me and becomes my nurse for the night.
Thank goodness she is here– I honestly don’t know how I would handle all of this if she wasn’t.
It is hard to sleep. The staff can’t give me any sleeping aids because I’ve just had brain surgery, so apparently they need to keep a close watch on me– although no doctor comes to visit me during the night, only nurses who know absolutely nothing about my condition and what kind of surgery I’ve just had. You’d think they’d read the patient’s chart before entering the room. The physical pain of the surgery is also not helping my restlessness– nor are my thoughts haunted by cancer: What if I don’t make it? What if I do become one of the statistics? What if my life never returns to “normal” again?
In the middle of the night, I have to use the restroom and wake Juliette up, as I am too unbalanced to walk by myself. She helps me get up in silence and firmly grasps me as I lean on her shoulder, trying to walk to the restroom without tumbling down to the floor from experiencing a complete loss of equilibrium. As she holds me on my unsteady feet, making sure I don’t fall as I use the bathroom, I hear her recent words spoken after shaving my head: You are the strongest woman in the world. Suddenly I come to terms with the fact this isn’t true. I am not the stronger sister. She is. There’s no way I would be able to keep it together, watching her bald, bruised, with bloody stitches across her scalp and not bawl my eyes out at the sight of seeing her as a cancer patient. Yet Juliette presents me today with an image of steel stronger than yesterday’s. I don’t know how it’s possible.

October 28th 2011

2012-02-06T07:59:00.000-08:00

October 28^th 2011 (Baltimore, MD)

That night we land in Baltimore and catch a cab ride to a hotel. The WAND MRI (where images of my brain will be captured with markers stuck around my head, in order to help Dr. Orville navigate around during the surgery) is scheduled at 6:15 am. I hardly sleep and lay awake in our hotel room for the rest of the night, wishing the damn surgery could just be over already. When our alarms ring at 5 am in the morning, I am already awake and jump into the shower. Half-an-hour later and a quick shuttle ride to the hospital, not only are we walking the grey and gloomy hallways of Johns Hopkins once again, but every corner I turn brings unpleasant flashes of my first surgery (undoubtedly the most disturbing moment of my life so far.) I feel haunted, literally– or as though I am the one haunting the hallway. If this was a Stephen King novel or a M. Night Shyamalan movie, this is when I would realize I actually never pulled through the first surgery (1/20 people don’t) and have actually been reduced to a lost soul condemned to eternally undergo chemotherapy and one surgery after the other, thinking she still has a chance at living a normal life.

But this is not an M. Night Shyamalan production– just a blog called One-Eighty, a title reflecting the opposite direction my life has taken since late July.
Prepping me for the surgery takes longer than last time– it seems either the staff has become completely inadequate or the fact I’ve been put on steroids since discovering that cyst is making me irritable. Juliette and I have both lost our patience, especially when an old nurse tells her she’s not allowed to come into the prepping area. Naturally Juliette darts into the room anyways and stays by my side, watching my vital signs and asking questions to the anesthesiologist and to Dr. Orville when they stop by to go over their procedures. Finally I am rolled into one of the operation rooms in the cold basement. As a woman presses a mask on my face, insisting I take deep breaths, I hear the anesthesiologist tell me she is injecting “medicine” into my IV. I manage to frown on the operation table. Medicine? This isn’t medicine. Medicine is something that heals you. Don’t dumb it down and just call it what it is: a strong drug that is going to knock me out so Dr. Orville can open my skull again and drain this stupid cyst caused by the radiation I received to treat this horrible grade 3 brain tumor growing in my head since 2005.

Last time I was put out, I experienced a very lucid and vivid “dream” as I underwent brain surgery, aware on some level– I’m guessing probably near the end of the procedure– of what was going on. Great literary/cinematic material but a most unpleasant and scary experience– to the likes of being tied down on the operation table, powerless, watching doctors move about unable to speak or move myself, and most of all, feeling an indescribable sensation of being in two places at the same time: laying flat and unconscious in the operation room versus living consciously in that “dream.” Now, as I’m about to pass out, I find myself desperately hoping that I do not dream anything at all this time around.

October 27th 2011

2012-02-03T07:26:00.000-08:00

October 27^th 2011 (Orlando, FL)

I can feel myself slowly waking up to Juliette’s words, telling me the surgery went fine.

“Huh?” I croak.

“The surgery to drain the cyst caused by radiation, Kat. It went fine.”

“Where am I?”

“Post-op recovery area at Johns Hopkins.”

“Bullshit. We haven’t even flown to Baltimore yet.”

“We did. They just gave you some Versed to make sure you wouldn’t remember much.”

I open my eyes fully. I am staring at the ceiling of my bedroom in Juliette’s house.

“Ha,” I mumble before burying my head back into my pillow. “I knew it was all a dream.”

It’s the first time I dream about anything to do with surgery and brain tumors since my return to Florida after completing radiation so I wake up that morning in a less-than-cheerful mood. Juliette and I are flying back to Baltimore tonight and the surgery to drain that cyst is scheduled for tomorrow early in the morning. Yes– in comparison this procedure is supposed to be a lot simpler than the previous one (according to Drs. Wilbur and Orville anyways since no brain tissue will be removed) but each hour that passes that day adds to my anxiety. Just like my first surgery, it’s that particular moment I am dreading already– the moment I will wake up in the post-op room trying to make sense of what is going on and wondering how the surgery went.

Call it Fear of the Unknown, I guess?

As I put away laundry, I try to ignore a far-away voice that keeps repeating: What if something goes wrong? Last time the surgeons had to give me a beta-blocker to control my heart rate as I simultaneously “dreamed” I had flat-lined. I realize, as I proceed to pack a light carry-on for the trip, that I am not made of steel. Enough already. How much can a human being endure in three months? How many more ordeals must I go through before I can finally let my guard down? How much more strength will I need to show? I’ve just gone through the trauma of being diagnosed with a life-threatening disease, a painful and scary brain surgery, all followed by six hellish weeks of radiation and chemo at Johns Hopkins. Can I not just move on with my life now, finish my PhD, do more aggressive chemo, beat this stupid cancer, try to be happy and focus on the future instead of on this Fucking Tumor?

Yes, enough already!!!

When Juliette comes home from work, she finds me crying in bed. She doesn’t need to ask me what’s wrong– she already gets it.

“You’ve been strong all this time, Kat. You just gotta keep on being strong.”

“I’ve been fighting for three months straight now!” I sob out to her. “Can’t I just please get a small break? We just got back here!”

Juliette sits down next to me on the bed. “This is just a bump in the road– it’s not a tumor recurrence, and that’s what’s important. Just a cyst that needs to be drained.” She pauses. “Dr. Hercules thinks it might be a good sign– means your brain had a strong reaction to radiation.” I don’t answer. I keep crying. “I know this sucks, but this needs to get done and you’re going to feel a thousand times better once it’s over.”

At this point I don’t care what any neuro-oncologist says. “I am so sick of this bullshit! I just want my life to be normal again! And I don’t want to go through another surgery!”

“It won’t be nearly as bad as the last one.” Juliette pauses again. “And I’ll be there just like last time.”

Of course she will be. Juliette has been the most faithful and loyal sister in the world, continuously guarding my side like the Rabid Dog she always will be. I wipe my tears away.

“Thank you,” I murmur.

“You don’t ever have to thank me. I told you before– I would take the Fucking Tumor for you if I could.”

“No. We’d be screwed– I need a vicious and brilliant doctor who understands medical jargon.”

Juliette tries to smile. “Kat, I’m pretty sure you could pick up medicine easily.”

October 20th - October 22nd 2011

2012-02-01T05:47:00.000-08:00

October 20^th 2011 (Orlando, FL)

After a well-deserved “end-of-radiation” celebration last night at Hillstone’s, a chic restaurant bordering Lake Killarney in Winter Park, I ask Mark to shave what’s left of my hair when we get home. The house turns into a barber parlor as I sit down on a stool next to the kitchen counter and Juliette brings out a clean towel.

“Ready?”

I kind of nod. There is no way you can really be “ready” or prepare yourself for something like this in the course of your life– so might as well get it over with quickly.

“Go for it.”

Mark turns on the electric razor, accompanied by a buzzing sound. I feel the blade focus on the left side of my head as he mows off whatever is left of my hair like the parse wool of a sheep’s back. Biting my lower lip, I manage to remain composed sitting balanced on that stool. I try to think of other things by cracking a few jokes with him, such as taking on a second job as my personal barber. Finally, I ask his opinion about smashing my radiation mask to little bits and pieces. How would I go about doing that when it's made of soft-netted plastic? He recommends freezing the mask with liquid nitrogen and then destroying it with an ax or hammer– both of which sound extremely therapeutic.

As I sit on that stool, time passes as consistently as that bzzzzzz noise. The more hair I lose, the more I wish for it to grow back– although I know that because of the radiation blasted on the right side of my head, it might take a while. At least those wigs look good and natural but I see them as a temporary solution. I want my hair back and the freedom to dive into a lake or into the ocean should I choose to.

“You are the strongest woman in the world,” Juliette declares, standing next to me and making sure the razor blade doesn’t accidentally go off track and shave my eyebrows off– or some other bullshit. I’ve been on such a “lucky” streak in the past few months that I’m not sure what else to expect: a brain tumor, surgery, radiation & chemo, and hairloss.

What other obstacles will be standing in my way in the next few months?

I shrug my shoulders at Juliette’s words. I’m not that strong, because I end up sobbing in the shower five minutes later in spite of everything I’ve told myself up to now. It doesn’t matter what angle I approach the situation with, or whatever other analysis I choose to explain the cancer-patient shoes I have been forced to fill; it doesn’t matter that things could always be much worse than they are; it doesn’t matter that hair in the grand scheme of things isn’t important and I have faith that it will grow back eventually. None of this should be happening to me– or to any human being on the planet for that matter.

October 22^nd 2011 (Orlando, FL)

Headaches are getting worse and my left arm isn’t improving at all. I have an involuntary tendency to keep it still when I walk as though it’s broken and is healing in a sling. I also have a strange lack of balance and it feels like I’m running on crooked pavement when Juliette and I go for a jog together that afternoon. I haven’t even tried playing piano because I already know my musician skills have probably gotten worse compared to last time. I am trying to stay positive and not be paranoid– ie: your body has just gone through hell, this is a dip before you build your strength up again– but at the same time, I can’t help but wonder if all of this is normal. Juliette wants to take me to her ER in Altamonte Springs during her upcoming shift and scan my head quickly to check that everything is “normal,” so to speak. Finally I reluctantly agree to go with her and stay silent and teary-eyed on the way over there in the car. Better be safe than sorry– but I am getting so sick of hospitals, doctors and undergoing a multitude of scary tests and scans.

I am kind of moody as I enter the ER. First of all, Juliette has informed me that many of her colleagues have been reading my blog. This is so not how I wanted to meet them– feeling like crap, needing to get my head scanned and wearing a small hat to cover up my shaved head. There is no point putting on a wig if I need to take it off once I get to the hospital. I wanted to meet her colleagues as ME– pre-seizure, pre-cancer, pre-buzzcut, pre-Fucking Tumor ME. Second of all, I will have to cancel my plans for the evening to visit the haunted houses of Universal Studios with some friends in preparation for Halloween. This last-minute CT scan has snuck up on me right when I had finally put my guard down and was preparing to live a normal life again: consistent PhD work, novel writing, pursuing my other hobbies, a good healthy exercise regiment and building a fabulous social life– all without receiving those dreaded daily doses of radiation. Third of all, I am worried and a bit scared as well. I know I will be fearing every CT scan and MRI from now on and wondering about the outcome. I can still hear the words of that jerk of a doctor in the ER Richland hospital on the west coast– “well, I have not such great news,” followed by his infamous and indifferent “please let me finish” as I alarmingly asked him for more details.

It doesn’t take too long for me to get scanned in the Altamonte ER. Juliette’s colleagues are extremely nice and attentive. It’s easy to tell who’s been reading my blog (I’ve heard sooo much about you usually gives it away) and who hasn’t. Even though the evening is creeping up on us, Juliette is on the phone with Dr. Wilbur, my neuro-oncologist at Hopkins, as she emails him my CT scan results. I am impressed with the dedication he shows to his patients working so late like he apparently is, but unimpressed with the conclusion that both he and Dr. Orville come to: I am in need of a second surgery. Not because of tumor recurrence (thank goodness) but because radiation has caused a large cyst to form on the right side of my brain. Great. This cyst explains all of the symptoms I’ve been feeling– headaches, loss of balance, light-headedness and of course this dreaded left arm numbness, which, up to now, has played more the part of a tumor-reminder than a nuisance. This stupid cyst needs to be drained, but even though both doctors declare it should be a simple procedure compared to the last one (partial tumor resection on August 10^th), I feel myself growing angry. I literally just got back home to FL and am already in need of another surgery at Hopkins. Plus the thought of dealing with treatment complications such as a cyst isn’t exactly putting me in a good mood. Apparently cysts caused by radiation occur extremely rarely: less than 10% of patients getting treated develop them, and I just happen to be one of the lucky ones. Yay me! Poised, Juliette is standing at the foot of my hospital bed explaining all of this in a calm manner, wrapped in her white doctor coat and wearing scrubs, but I am getting exasperated nevertheless.

I sit up, wearing one of those usual unflattering hospital gowns that would even make a swimsuit model look drab and unattractive. “Couldn’t they have scanned my head over there? Instead of letting me go– then telling me I have to fly all the way back to Baltimore again?”

“They could’ve, and they should’ve,” is Juliette’s answer. I can tell she is slowly getting just as mad as I am. “They should’ve probably scanned you after that small seizure at the beginning of September.” She pauses. “But had they seen a cyst was forming, Doc might’ve put a halt to your radiation treatments, and you needed them. So maybe it’s a good thing they didn’t scan you after all.” She sighs. “It’ll be ok. We’ll just quickly get the cyst drained and then get back here in Florida.”

Today is Thursday, and might I say, a very Black Thursday indeed. Despite our protesting phone calls to the administration branch at Johns Hopkins, trying to schedule the procedure as soon as possible, the next available date is only next Friday, October 28^th in the early morning.

Looks like the rest of our fun Halloween plans might crumble as well.

October 16th – October 18th 2011

2012-01-18T22:01:00.000-08:00

October 16th 2011 (Baltimore, MD)
French Philosopher Jean-Paul Sartre once claimed in his play No Exit that “Hell is other people.” I disagree. Hell is doing six weeks of radiation at Johns Hopkins, five days/week, receiving a total dose of 5940 cGy to the brain. In theory, my radiation treatment is ending in two days– on October 18th 2011, otherwise known as the date of deliverance. The fact radiation is pretty much completed seems so surreal that this notion, once crystal-clear, is now fogged by a dream-like quality that makes it unattainable, like it’s never really going to happen; like every day I wake up, one more day of radiation will be added to my treatment course, or some bullshit like that. Everyone is asking me if I’m excited. Excited? Not really. The monotony of each day as the weeks have passed me by, every day identical to yesterday, the day before that and the day after any of these two, has dazed me into adopting a placid resigned state-of-mind. Yes, I am in hell, and it’s ok. Please let me be. I’ve unwillingly adopted a “I’ll believe it when I see it” state-of-mind– like I’m in jail, or better yet, a miserable convict in a chain gang, and my entire escape has been planned out but hasn’t been executed yet and keeps getting postponed.
I can’t stand anything any longer.
I can no longer stand the sight of the city of Baltimore as the car makes its way towards the hospital. I can no longer stand the sight of my orange “radiation check-in” card with my name next to those numbers identifying me as a cancer patient. I can no longer stand walking through these basement hallways, haunted by bald people walking around wearing hospital gowns. I can no longer stand the strong smell of disinfectant as it invades every creak and crack of the Weinberg Building. I can no longer stand the sight of my radiation mask slowly coming down on me, accompanied by that nauseating smell of disinfectant as it is clamped on my face. I can no longer stand the feeling of my head being tightly locked on the LINAC bench. I can no longer stand the strident sound of photons hitting my brain in intervals as treatment takes place. I can no longer stand walking out of there feeling like absolute shit, wanting to crawl in a hole and shut the world out.
No more.
There is a small grain of hope, buried deep somewhere inside me that does believe in the reality of my near-by “escape”– and looks to the good life waiting for me in Florida once this torture is finally over. A comfortable home. People around me who don’t have cancer. People who love me. Being surrounded by life and not death. Following treatment with another excellent neuro-oncologist and getting even healthier. A reduction in brain swelling and the gift of using my left arm just as skillfully as before– something I will never take for granted again. My left arm, by the way, has stayed around the same level of “weirdness.” Strangers can’t tell anything is off but I can, by executing tasks that require precision and timing– such as playing piano and typing at the speed of light, as I usually do ;).
So. Two more days and the people-in-white coats claim I should never have to step foot in a treatment room again– the treatment room I have grown to hate with such rage it would put Pavlov to shame. To some degree it seems too good to be true that I've finished serving my sentence. After this– Temodar and I can supposedly live happily ever after in a monogamous relationship. Or at least for six months up to a year.
Just two more days…..

October 18th 2011 (Baltimore, MD)
Juliette has bought a plane ticket to Baltimore and is meeting me at Johns Hopkins today. Her emailed itinerary adds credibility to the situation. I guess it’s all really happening– I’m actually going home soon. We’ve planned part of my return already, such as celebrating Halloween dressed up as flappers and gangsters, taking dance lessons together, enjoying outdoor activities in sunny Florida and partaking in a great social life. I have a feeling I will adapt nicely to living in Winter Park– Juliette’s home is walking distance to Park Ave., and since I can’t legally drive for another five months because of the short seizure I had in September, I would call this a prime location.
The timing of Juliette’s flight is such that when I step out of treatment that day, carrying my ugly radiation mask (patients get to keep them), she is sitting in the small squared-off waiting area and flipping through a magazine. Doc’s nurse, Rob, is there as well to hear me “ring the bell”– a tradition in which all patients who complete their radiation therapy ring a bell hanging from the wall. The bell consists of a gong with a hammer used to announce someone’s hour of deliverance, victory, moment of joy, or whatever feeling the patient has grown by the end of his treatment. I remember first starting radiation on September 1st and meeting a patient who had just finished his round of treatment. He got up weakly and struck the bell once– one measly little tired dong almost welcoming defeat. My turn to ring the bell now, except that I strike it three times– each time growing louder and more violent than the last.
How dare you try to invade my brain, you worthless !@&^%$$%#$%%&&!!!
Rob raises an eyebrow. “Well you certainly have kept your strength.”

Next is a short meeting with Doc who performs another neuro exam on me, after which he makes me sign a “radiation therapy treatment completion sheet"– which I guess acts as discharge papers (if curious, visit http://www.facebook.com/media/set/?set=a.295095447168650.84343.269536389724556&type=1&l=c65d097535.)

“Keep an eye on how your left arm is doing,” Doc reminds me. “You should notice improvement in its fine motor skills shortly, once brain swelling caused by radiation goes down. Any questions?”
“Just one.” I pause and give him my sweetest smile. “How would I go about destroying the radiation mask, Doc?”
Ever since learning that patients get to keep their custom-made radiation masks, I’ve had this half-amusing, half-disturbing fantasy of striking that horrible mask with a hammer and watching it break into a million pieces flying everywhere: amusing because I’m probably the only patient who would actually follow through; disturbing because of the symbolism implied in this scenario, and the fact I probably wouldn’t carry through without shedding more tears at the horror of my reality.
Doc, however, looks amused, which somehow enhances the twitching of his ‘mad scientist’ darting eyes. “In all of the years I’ve worked here, I’ve never had a patient ask me that question. I’ve heard of people who use their masks for Halloween…”
I roll my eyes. “Yeah, cause that’s what I want to be for Halloween– a cancer patient.”
Doc chuckles. “….or use them as pots to grow plants.”
“Plants? How can they even stand the sight of them?”
“I must admit I like your plans much better,” Doc continues, bringing a hand to his chin. “Problem is, the mask is made of soft-netted plastic. You could use scissors, but I doubt that’ll have the dramatic effect you are looking for.”
“Yeah…no…anything else?”
“Why don’t you try using an ax?”
Could do. Maybe Mark has one laying in the garage somewhere. Everyone in the room gets up. Time for good-byes. Doc shakes my hand. “Good luck to you. I hope everything works out.”
Doc has always been one to look to numbers, probabilities, prognostic Gaussian curves, etc., so I make a promise to myself to send him my first clean MRI.
“It will work out. Thank you Doc.”
Rob gives me a big hug. “You were our favorite patient. Stay in touch. Shoot us an email once you’re back in Florida.”
“Will do.”
Juliette and I head out of the exam room. After a while of walking down the hall, which I now know I will never have to walk through again, she speaks up. “Have you noticed how Doc never seems to look straight at anyone he speaks to?”
“Yeah. Like his mad eyes are….”
“…always twitching and avoiding direct contact with others?”
“Something along those lines.”
On our way out, we stop in front of a couple of bookshelves near the elevator, where patients can borrow and read whatever books they pick as they wait for their appointments. Most of the books stacked here are religious. I take Miracle of the Andes out of my purse, grab a pen and inscribe the inside cover with the following words:
This book taught me to never give up. ~Kat xox
After placing the book amongst the others, Juliette and I both turn around and walk outside without looking back, away from the radiation machines, the squeaky clean basements and Doc’s mad twitching eyes.
Time to leave this all behind and start living my life in Florida.

October 4th- 5th 2011

2012-01-11T09:00:00.000-08:00

October 4th- 5th 2011 (Baltimore, MD)

I’ve been noticing something is off with my left arm. It doesn’t seem to respond as quickly and efficiently as it usually does. It gets numb and tingles too. It’s kind of freaking me out. Juliette says it’s most likely the radiation swelling the right side of my brain– but we schedule an emergency appointment with Doc, my radio-oncologist, to be on the safe side. He concurs with what we thought– this lack of left-handed dexterity is temporary and caused by swelling on the right side of my brain, a side-effect which could be reduced if I started taking steroids.
“So all of this is temporary?” I inquire once again in the examination room. Doc nods. “So if I choose not to go on steroids– I have no chances of creating permanent damage, or anything of the likes?”
For the first time ever, Doc’s nasal voice is actually comforting to hear. “No. Nothing is permanent. The brain swelling should go down in a couple of weeks after you’re done with radiation. Right now it’s a matter of how much you can tolerate this lack of fine motor skills in your left hand.” He pauses. “Or were you perhaps finally considering going on steroids?”
Here’s a hundred-dollar question that always seems to work with doctors: forcing them to step into your shoes. You can’t get more straight-to-the-point than that. I discovered this efficient technique back in August upon meeting Dr. Wilbur for the first time and asking him which neurosurgeon he’d pick at Johns Hopkins if this was his brain and his Fucking Tumor. I rely on this method often and so far, it’s never let me down.
“What if this was your brain, Doc?” I ask. “Would you go on steroids?”
Doc doesn’t hesitate for a second. “I’d stay clear of them, frankly.”
I nod. “Then this is what I shall do.”
If it’s just a matter of tolerance– I guess I can tolerate it. It’s just weird to think at the same speed as before and not get the same usual physical response on my left side. Now I can tell I’m gonna be more….annoyed than worried. Typing, for instance, takes longer now because of left-handed-induced typos (here’s some food for thought: after all of this, I still find it strange that our left side is controlled by the right side of our brain– and vice-versa.) Yes, annoyed would probably be a better word to pick to describe my current state of mind. So, on top of everything else– you have to deal with a lack of fine motor skills in your left arm? Juliette calls me later that afternoon, insisting I start to use my left hand for everything I do– opening doors, brushing my teeth, petting Wolfie, eating, etc.
“That way you won’t need occupational therapy once this brain swelling goes down,” she explains. “I also told Doc that you play piano. His nurse Rob is a musician– tomorrow he’s planning on evaluating your piano skills relative to your left arm.” I sigh. I haven’t played piano in a long time, and I can already tell I’m going to be awful musician because of how much slower my left fingers are now moving. “Kat? You still there?”
“Yeah.”
“What’s wrong?”
“Nothing. Just wondering what’s coming next. There’s always something. Couldn’t I just be the one person who gets treated with radiation and doesn’t end up with nasty side effects?”
“At least you’re not on steroids.”
“True.”
The next day, after radiation, Doc’s nurse Rob brings me to the second floor so that I may try out the grand piano. I sit down on the bench next to him nervously and inform him there’s only one classical piece I know by heart– the others I need sheet music to perform. It’s the first two-hand composition I ever learned as a teenager– Beethoven’s Für Elise. As I start to play, I realize that Rob won’t know how much brain swelling is actually affecting me, since he has no idea how well I played prior to radiation. Now I am making mistakes one after the other, more so with the left than the right hand, and am hating every minute of it. I love writing, I love playing piano– and my radiation treatments are now threatening both of my hobbies. When I type with my laptop, I make mistakes left and right and use the delete key way too often; now I’m playing piano and am making tons of mistakes as well.
Bullshit.
In the middle of Für Elise’s next movement, I break down in tears. “I just want this stupid brain tumor to go away!”
Rob helps me up, leads me to a bench next to the piano and chooses his words carefully. “It’s hard to make sense of anything, isn’t it.”
“You mean like why all of this is happening to me?”
“Yes.”
Yes– why is all this crap happening, exactly? One day I’m finishing my PhD in Physics in good spirits, happily planning the rest of my life, and the next day– I suddenly have a Fucking Tumor nested in the right frontal lobe of my brain? The only thing that does make sense is that none of this is making any sort of sense whatsoever.
“I just don’t think I’ve done something so horrible in my life to deserve anything like this!” I manage to hiccup.
Crying in public, especially near the radiation treatment rooms at Johns Hopkins, is no longer an issue for me. Don’t sweat the small stuff.
“You haven’t done anything to deserve this at all.” Rob pauses. “You’re doing what you’ve always done in life– going after what you want and getting it. This is no exception, Kat– you’re going after your health back with as much determination as anything else. You will succeed at beating this cancer to the ground– like anything else that you’ve put your mind to so far. Tell me– have you ever given up before in your life?”
I shake my head. It’s strange to hear these words from Rob– I guess he knows me better than I thought. I wipe my eyes with the back of my sleeve. “I’m trying as hard as I can to stay strong– it’s just so damn difficult.”
“You can’t stay strong all the time, Kat. And you can’t ever give up– it’s not who you are.”
“I know.” I glance over at the ivory keys of the piano in front of us. So I’m making more mistakes than per norm because of brain swelling– big fucking deal. At least I can still play and read music. I have a flashback of myself sticking a piano book into my carry-on the morning of the surgery, terrified of how I would wake up– whether I’d still think the same way with all of my previous abilities: physics, math, writing and piano. Didn’t Beethoven become deaf at some point and become deprived of hearing the one passion/love in his life– his own beautiful music? And I have the nerve to cry because some temporary lack of dexterity in my left hand is preventing me from playing Für Elise as well as I did before?
I try to smile at Rob. “Wanna play chopsticks with me?”
Rob smiles back and we go sit down at the piano once again. After executing a small cheerful concerto together, he helps me up and walks me down the hall towards the lobby.
“Kat,” he says before I leave. He places his hand on my shoulder. “Don’t lose heart.”
At once this sentence is repeated in my head– Don’t lose heart.
“I won’t. Thanks for everything.”
Rob hugs me good-bye. His words continues to ring into my ears throughout the entire drive back to Alexandria. Kat– don’t lose heart. He’s right– I can’t lose heart now. I’m not allowed to. I’ve gone too far and accomplished too much in the past few months. The battle isn’t over yet.
Don’t ever lose heart.

September 29th 2011

2012-01-08T12:36:00.000-08:00

September 29th 2011 (Baltimore, MD)

I have a recurrent nightmare in which I’m waiting for the results of my first post-radiation MRI. After the MRI is performed, I am told to sit in a little room and wait for the doctor to come give me the results. He finally walks in– it’s the asshole from the ER in Richland, the doctor who dryly told me “not to interrupt him” as he was breaking the news that I might have a brain tumor. When he enters the room, he looks straight at me and says: “Unfortunately–”

This is the part in the dream when I always wake up.

I have this dream again tonight– several times actually without any changes in the scenario. In the morning I am already exhausted from a lack of continuous sleep, and I know I will have more than a radiation battle to fight today. I still haven’t heard from the insurance company regarding the Temodar being over-nighted so the first thing I do as I am having coffee in the morning is call them to figure out what the hell is going on. I am told, after waiting forever, that the Temodar hasn’t been shipped because my insurance does not have any credit card information on file for my co-pay, which is why no one called me (I was promised a phone call yesterday.) Trying to reason with my insurance company has, by now, become one of those far-far away goals that I know will never get realized in this lifetime. I politely give the insurance lady my credit card information without taking the time and energy to explain it should’ve been their job to call me and collect payment from me, not the other way around– especially after Dr. Wilbur’s secretary talked to them yesterday.

I take a deep breath on the phone. “Now,” I say speaking at a snail’s pace to ensure I get through to the lady correctly. “Can you confirm the shipping address for me?” The lady gives me the correct address I’m staying at in Alexandria. “Can you confirm my dosage of Temodar?”

“125 mg.”

“Can you confirm when this package shall be arriving?”

“Through Fedex tomorrow before 6 pm, Ma’am.”

When I hang up, Sophia, who is sitting across from me at the breakfast table, looks madder than I am. “My God this is so infuriating!” she spouts out. “Can’t these insurance people just do their jobs?”

I smirk. “It’s been like this for over a week. This is nothing.”

When we get to Johns Hopkins, the Weinberg Building parking lot is full. We drive around a bit until we find a car in the process of backing up. The driver gives us a sign telling us he’s seen us, but as soon as he leaves another car proceeds to swoop right into our parking spot.

“What the hell?” Sophia hisses out, gripping her hands on the driving wheel.

Dealing with insurance has put me in a rotten and aggressive mood. “No way,” I mumble to myself. I get out of the car and slam the door, walking straight towards the other car. There’s an older couple in there staring straight at me, looking surprised (and dare I say, a bit scared) that I’m apparently planning on confronting them.

“Excuse me,” I start off, “we’ve been waiting for that parking spot, and I have a radiation appointment to get to.”

The male driver looks me up and down. “You have a radiation appointment to get to?”

Ok– so I don’t exactly look like a sick person; I know that by now. In fact, last week-end, when Ian flew me to Orlando for a quick visit, the security guards at the airport looked dubiously at the note stuck on my Temodar medication and back onto me like they were trying to connect the dots or something. This is the note I’ve written to simplify things when I partake in air travel and scotch-taped on the prescription to make sure it doesn’t get x-rayed:

Medication for Katarina Mizouni

Temodar, 125 mg daily by mouth (chemo taken orally for grade 3 brain tumor) prescribed by Dr. Wilbur from Brain Tumor Center at Johns Hopkins Hospital

This medication is light sensitive and CANNOT go through the x-ray machine
This medication is radioactive, so alarm may sound
Ask for prescription if needed.

Not to mention that whenever we go out to a social gathering of some sort in FL, and Juliette introduces me as her sister, her acquaintances immediately assume the blog they’ve been reading has been written by our other elusive sister– the one who’s apparently at home on her death bed, writing her will and waiting for the Grim Reaper to make his appearance (woooosh….yes this is the sound the Grim Reaper makes when he hangs around your bedroom curtains.) I can’t even tell you how many times, after the required “This is my younger sister” introductions, I’ve heard the lines “So I’ve been reading your other sister’s blog and….” or “so how is your other sister doing?”

I suppose I should take this as a compliment since I promised myself upon getting diagnosed that I would never look like a sick cancer patient.

So back to the parking lot of the Weinberg Building.

“Well we’ve been waiting to,” the driver finally replies, “and I also have a radiation appointment to get to.”

Right. We are at Johns Hopkins. Everyone has some type of radiation treatment for which to go in. I see the guy’s wife nudge him– kind of in a “let’s go honey” sort of way. I bite my lower lip.

“You have not been waiting,” I reply angrily. “We’ve been there for over five minutes and you just got here. So get out of our parking spot please.”

Finally the man grumbles out of there and returns what is rightfully ours.

When we drive back from Johns Hopkins that afternoon, I call the insurance again to confirm the Temodar is on its merry way like the lady from this morning promised it would be. However I soon find out that nothing has been shipped because “the three different strengths of Temodar, (three pills that add up to 125 mg), haven’t been approved by my insurance.” At this point I’m on the verge of tears.

“I don’t understand,” I manage to say into the phone. “I’m trying to get my hands on my Temodar– you know, chemo that is taken for brain cancer?– and no one seems to care whether or not I actually get the meds. These are meds I need to live.” The lady stays silent. “This is the fourth time I call in less than a week.” The lady tries to interrupt me but this time I’m so enraged that I carry on. “If there’s a problem, you don’t just take someone’s credit card info and tell them everything’s fine– you fix the problem until there is no problem. Don’t you agree?” No answer. “I’m sure if this was you, your spouse or a beloved family member– the drugs would already be stacked in your medicine cabinet– wouldn’t they?” Again, no answer. “Let me ask you something, Ma’am– do you actually care whether or not I receive the chemo I need to treat this brain tumor with which I was recently diagnosed?”

The lady stays silent for a few seconds. “Yes,” she finally says. “We care about all of our patients here at the company.”

“So why haven’t I received my medication then?”

I explain to the lady the intricate bureaucracy I’ve been dealing with over the past few days, until, after a three-way call with Dr. Wilbur’s secretary, we seem to clear things up and I am given the following Fedex tracking number for my order: 468259151. The first thing I do when I get home is check the number online on the Fedex website. Guess what– it’s not valid. Ha. How predictable. I am so infuriated and drained that I decide to wait and see whether or not the order will still make it the next day before I call and yell at the insurance company again. Besides, I have no energy left and it’s time for a post-radiation nap.

Miracles do happen, and not just in the Andes– the next day, a Fedex employee knocks on the door with a package containing the Temodar.

Looks like with persistence and aggression you can accomplish anything.

Donations for medical bills and clinical trials are accepted at http://goo.gl/dX06V.

September 27th – September 28th 2011

2011-12-31T08:34:00.001-08:00

September 27th – September 28th 2011 (Baltimore, MD)

Tears are a waste of salt. You need salt to survive.

I come across this sentence while waiting to be seen by Doc, my radio-oncologist, and his nurse Rob at Johns Hopkins, reading Miracle in the Andes in the waiting room– the book, as I’ve mentioned before, that tells the survival story of the 1972 plane crash in the Andes from Nando Parrado’s point of view. This is Nando’s first thought as he wakes from a comma to discover that their plane has crashed in the middle of the Andes mountains, his mother and half his friends are dead, the other half are badly injured, and his dear sister won’t be alive for much longer. Crying is probably the only thing to do that would make sense to anyone at this point, however Nando does not allow himself the luxury of tears. Rather than give into weakness, he forces himself to adopt a survival frame of mind that is both marking, admirable and shocking all at once.

So next time I feel tears coming on– whether it be from watching that scary radiation mask come down on my face as I lay flat on the LINAC bed, from observing that bizarre, slender and bald alien-like being in the mirror that I’ve become and whose reflection I can’t recognize, or from simply being hit by the fact that I, Katarina Mizouni, have actually been diagnosed with brain cancer– Nando’s sentence echoes in my ears again, slightly modified to Tears are a waste of energy. Yes, I am allowed to cry, I know– in moderation of course. I don’t think I’ve been that bad at all when it comes to tears– I have my good days and my bad days, but always feeling sorry for myself is just going to drag me down and suck whatever energy I have left. So cry for a bit, get over it, and then put on your running shoes to go for a jog outside.

The appointment with Doc is short; as usual he asks how I’m doing– how I’m handling both chemo and radiation in general and whether or not my headaches are getting worse.

“Still exercising every day, Doc,” is my answer every week and one that I do not fail to give him this time around.

I admit it’s becoming harder to exercise in comparison to three weeks ago– my energy level isn’t quite what it used to be and the motion of running sometimes worsens the headaches that form on the right side of my head. Working out has become an equilibrium of listening to my body and pushing myself just a bit to get enough of a sweat on.

Doc stays silent for half a second. “You are an inspiration,” he declares, which I’m guessing is as close to a compliment as he’ll ever give me. “What about your headaches?”

“They are bearable,” I answer. No steroids for me. “Still at around the same pain level.”
“And apart from that, you haven’t experienced any other symptoms? You feel pretty normal?”

I think I involuntarily give Doc a bizarre glance. Normal? I have no idea what normal is anymore. What I considered normal a few months ago involved some bullshit tumor growing in my brain. Now my body is being subjected to both radiation and chemo. At this point I don’t think anyone would recognize their own bodies and be able to differentiate between normal and abnormal. In fact I’m trying not to make a huge deal out of every headache, “interesting” sensation or dizziness I experience, as to not drown into a whirlpool of disquieting questions: Is this normal? If I don’t mention this to anyone, will it have grave and unforeseen complications/consequences? Am I about to have another seizure? Is this the Fucking Tumor growing or shrinking? Etc.

“I guess as normal as a young woman recently diagnosed with a grade 3 brain tumor would feel, Doc,” I finally answer.

I think Doc gets my point because he raises an eyebrow. “Well then. See you next week.”

As I get up and pay my respects to Doc and Rob, my cell phone rings– my sister Sophia’s name, who is coming into town tonight and staying for a few days, is showing up on my caller ID. I depart from the room and pick up.

“Hello?”

“I’m at the airport,” she says, sounding supremely excited. “Guess what. Juliette has bought us a present.”

“What?”

“Remember when you mentioned a certain musical was playing at the Kennedy Center in DC?”

“Yes…” I tentatively respond, waiting for her to finish the sentence I’m hoping to hear. “Les Misérables.”

“Juliette got us two tickets for tomorrow’s performance.”

As usual Juliette knows what’ll make me happy. “That’s great!” I blurt out into the telephone with a huge smile, hurrying to the elevator. I get a weird look from a few patients in the basement– perhaps they’re not used to hearing much laughter or seeing many smiles around here.

“The show is tomorrow at seven,” Sophia continues. “But we have insurance on the tickets if you’re not feeling well–”

I cut her off. “I’ll max out on Zofran.”

This is one theatrical performance I am certainly not missing, and if taking the maximum dose of anti-nausea drugs is needed then so be it.

The next day, I realize while looking at my calendar, that I only have a few days before I run out of Temodar. After radiation Sophia and I head out to the pharmacy in the Weinberg building, where I proceed to give my name and birthdate at the pick-up window. I watch the pharmaceutical staff walk around like lemmings until one of them comes back wearing a polite smile.

“I’m sorry. Your insurance has denied coverage for this drug.”

“Excuse me?”

“I mean that it can’t be picked up at this pharmacy.”

After all the work I’ve put in regarding this stupid Temodar prescription, I am so shocked that I stay silent for a few seconds.

“I’m not sure what the hold-up is,” I finally state in disarray to the indifferent clerk chewing gum behind the partition. “I’ve been on the phone with my insurance regarding this for over a week now. Why is there a problem?”

“The insurance is telling us the Temodar had to be mail-ordered.”

Of course they are.

I try to stay calm. “Yes– and then they told me this wouldn’t be the case this time around.”

I remember Mr.-Bull-About-to-Collapse-from-Heart-Attack’s out-of-breath words very well (one of the numerous conversations we had regarding this issue anyways):

“Your prescriptions, Ma’am, are locked in with the Weinberg Pharmacy.”

Tries to hang up but I speak up again: “Locked in?”

“You can’t get your meds anywhere else right now but through that specific pharmacy.”

Again, tries to hang up but I interrupt him: “So what about the second round of chemo?”

“You’ll be able to pick it up at the pharmacy where you are getting treated.”

I leave the lemmings behind their pharmacy window and angrily dial the number of my health insurance. I spend the next hour and a half in the lobby, either waiting on hold listening to horrible music (whomever heard of excellent holding music???) or arguing with someone on the phone, until Dr. Wilbur’s secretary, Molly, takes over my battle and tells me the insurance will be mailing me the second round of chemo overnight and be calling me to confirm my shipping address.

I clear my throat. “So everything that was said before about my prescriptions being ‘locked in’….?”

“I’m not sure why your insurance said that,” Molly answers. “But you should be getting a call from them shortly.”

I stay silent at first. “Shortly?”

“Yes. Shortly.”

“I suppose I’ll believe it when I see it. Thanks for the help, Molly.”

“You’re welcome.”

I hang up. Sophia and I head to the elevator to get to our rental car. In the past tears have mostly been associated with sadness or a sense of helplessness; now they are pouring out of my eyes in rage. I am so angry with the insurance company that I feel like punching something, anything. Finally we arrive at our floor. I yell out:

“I shouldn’t be fighting to get the chemo– I should be fighting the reason I’m doing chemo!”

At this very moment the elevator door opens. I storm out, almost crashing into a startled girl who apologizes at once. I don’t answer. I’ve noticed my patience level has drastically gone down– from dealing with insurance bullshit or just people in general. For example– contestants on TV who cry because they get kicked off some reality show have become absolutely ridiculous my eyes. Do you have cancer or some other type of life-threatening disease? No? Ok then stop bawling please.

By the time we get home I still haven’t heard anything from the insurance company. I try to push the issue to the back of my head and focus on enjoying tonight’s performance of Les Misérables. Sophia and I get dressed up in cocktail dresses, I put on a brown wig, and out of solidarity, Sophia puts on a half-wig with a white headband attached to it– the half-wig I wore for my week-end in DC with Ian. Suddenly her hair has twice the length and twice the volume, which takes me a while to get used to (see photos at http://www.facebook.com/media/set/?set=a.295095447168650.84343.269536389724556&type=1&l=c65d097535).

The evening is perfect– starts off with a glass of champagne out on the patio of the opera house looking over the lit city of Washington DC before we go take our seats inside and watch the story of ex-con Jean Valjean being pursued by the relentless Inspector Javert. During intermission, Sophia’s half-wig is bothering her so much that she goes to hide in a shadowy corner of the theatre (the line for the restroom is huge) to try to fix it.

“Do you have a mirror?” she asks.

“Nope.”

“Take a picture with your phone,” she says as she adjusts the half-wig. “Does it look all right?”

I shrug my shoulders and take out my phone. At this point the half-wig has lost a bit of its “ooomph” but maybe Sophia will like it the way it is. As I take the picture and show it to her, her mouth drops in appall.

“This is horrible!” she exclaims. “I look like a 1980’s aerobics instructor with that white headband!” Come to think of it… She rips off the half-wig, bundles it up, and sticks into the sleeve of her jacket. “How the hell did you ever wear this thing?” she mumbles as we walk back to our seats and sit down. She pauses and looks around. “Do you think people around us will notice my hair is suddenly shorter?”

I try not to laugh. “I’m sure they won’t– but Inspector Javert might notice something is off when he jumps off that bridge. You know, you can throw it out,” I add glancing over the stuffed-up coat sleeve. Half-wigs don’t work on me anymore– I don’t have enough natural hair to actually hold the fake hair in place.

“Well, might as well keep it– who knows when I’ll need a half-wig, right?”

“Maybe on your next date. You can excuse yourself, go use the restroom and come back to the table with twice the amount of hair.”

The lights are dimmed down and we soon get lost in the second half of the musical. An hour or so later, we get up, mesmerized by the brilliancy of the performance, and head out to the exit after applauding the performers for a fairly long time. As we fight our way through the crowd, Sophia’s half-wig suddenly jumps out of her coat and lands on the floor. The speed at which she picks it up is impressive but she’s turned beet read by the time we reach the elevators to head to the parking garage.

“Do you think people noticed?” she asks, looking around.

I am trying not to laugh. “Notice what? A bundle of hair suddenly jumping out of your jacket?”

“Maybe they thought it was a piece of fur. The temperature is kind of getting cold outside.”

“Yeah, it’s freezing.”

“So?”

“So what?”

“So do you think people noticed the half-wig fall out of my jacket?”

“Only Marius from the show. I saw him getting ready to chase you down, calling out Mademoiselle….Mademoiselle….you dropped something. Here– let me.”

There is nothing to do but laugh at the idiocy of the scene this comment prompts us to visualize, until I recall it’s the end of the day– which means I have to start all over again tomorrow but without the Les Mis break: breakfast, work-out, drive to Johns Hopkins, radiation, insurance bullshit, drive back from Johns Hopkins, nap, PhD work, go to bed and get up the next day to do it all over again.

September 23rd 2011

2011-12-11T20:28:00.001-08:00

September 23^rd 2011 (Baltimore, MD)

Over the past week, I’ve managed to establish a sort of routine where my days start with a hearty breakfast, a nice work-out, a long drive over to Johns Hopkins, a short radiation treatment session, a long drive back to Alexandria, a quick nap and some PhD work if I’m feeling ok in general. The day ends with a nice chat with Ian on the telephone. He always inquires about treatment and how I’m doing. The first words that usually come out of his mouth when I pick up are, “are you all right?” He is sweet, thoughtful and caring and he keeps reminding me to hang in there. I can’t wait to move back to Florida permanently. First I will have family around, which I need now more than ever. I miss everyone atrociously– Juliette, Mark, Ian are all impatiently waiting for my return. I especially can’t wait for radiation to be over. October 18^th is my last scheduled treatment date and I’m literally counting the days until then.

Building a romantic relationship in conjunction with fighting cancer is something that is obviously new to me. Sometimes, as Ian asks medical questions, I can feel myself pulling away a little. I hate being viewed as a sick person– I don’t think it’s very attractive, and as this is a new relationship, I’m still sitting on the edge of my seat with this one. That and I don’t want this brain tumor to be at the foundation of the relationship. Hence I try to make things as normal as possible– like any other two people would start dating although, as you can probably tell, Ian and I have started this relationship at an accelerated pace. Sometimes I just tell him I’m fine when it’s far from the truth. He can usually tell if I’m lying. Other times I break down in tears or vent in rage about how I don’t deserve any of this. Ian patiently listens or offers comforting words until I ask him about his day, work, family, etc. and simply change the subject.

There’s only so much talk of brain tumors one can handle each day.

My own hair has by now almost completely fallen out– a lot more on the right side then on the left side of my head, which is due to the targeted radiation I am receiving. In fact I told Doc the other day, looking over his shiny smooth bald head, that he “looked like he had a lot more hair than I did now”– a sentence that made him chuckle. When I head over to Johns Hopkins, I usually wear a scarf or hat although I’ve seen other patients walk around bald in plain sight, something I know I’ll never be comfortable doing. Juliette has sent me the wigs I ordered online few weeks ago. I’ve found one prototype which isn’t expensive and that I’ve ordered in two colors for now: brown and semi-blonde (see pictures in album One-Eighty.) Hair has become a bit of an obsession now. I’ve started thoroughly analyzing hairstyles everywhere I go and in whatever magazines I flip through– while trying to decide whether a woman is wearing a wig or has hair extensions. Ian has asked me if he could see me without hair– a request to which I haven’t consented. Do I really believe, as he claims, that he will find me beautiful no matter what? Honestly I don’t know. Hair is hair. Hair, amongst other factors, carries a huge weight in the definition of outward beauty. At the moment it’s more a question of me facing my bald reflection in the mirror every day and not hating it. Once in a while I catch a glimpse of the old Kat– then a second later she is gone and I can no longer recognize the cancer patient staring at me.

I’ve also called my medical insurance to ensure none of my previous problems with approving my regime of Temodar would repeat themselves. I’ve talked to one man specifically more than once– a man who refuses to give me his name and extension and only spouts out the same generic 1800 number over and over again– but apparently he’s been assigned to my case because I recognize his breathless voice every time. He sounds like an overweight, overworked bull about to collapse from a heart attack. He’s also not very friendly nor that helpful. I’ve spoken to him twice now– each time to make sure there won’t be any problem picking up my second round of Temodar at the pharmacy in the Weinberg Building next week. Each time, the tired bull assures me the insurance has allowed some overwrite stating this will not be a problem. I remain skeptical so I am trying to get my hands on the chemo sooner rather than later.

Often, as I am getting treated, I wonder if these methods of killing cancer cells will one day seem barbaric to future generations. We used to drill holes in people’s skulls (trepanation) to cure epileptic seizures, head injuries and mental disorders; we used to die from diseases like the plague, cholera and malaria. Will we one day call this era “the dark ages” or tell today’s radio-oncologists to “put away your butcher knives!”– as Dr. McCoy from the old generation of Star Trek would scream out in appall? Advances in technology and medicine are not progressing linearly but rather exponentially, according to an article in Times I read recently. Juliette is always occupied with assembling a huge medical file of clinical trials, vaccines, alternative therapies and international research groups worthy of following over the next few years. Our motto: always have a back-up to the back-up of the back-up plan.

September 17th – 18th 2011

2011-12-07T16:25:00.000-08:00

September 17^th – 18^th 2011 (Washington, DC)

There are some moments in life that you know, prior to being experienced, are going to be more memorable than others. This weekend escapade in DC starts off with a similar mindset right off the bat: a well-deserved break from radiation, a much-needed change of scenery, and naturally seeing my British Prince again– all the while being aware of the vivid memories we are creating together as they are in the process of being created. This is my definition of living in the present. Since Ian, being from the UK and all, has never seen the capital of the US, we start off the week-end with a guided bike tour of the city– the National Mall and Capitol Hill, including the Capitol Building, Supreme Court, Smithsonian Museums, World War II Memorial, just to name a few. The highlight of the bike tour ends up being a rather humorous visit to the George Washington Monument– humorous because of the inscription on the panel of the southeast interior wall (a letter, if I’m not mistaken, written to Samuel Kercheval):

I am not an advocate for frequent changes in laws and constitutions. But laws and institutions must go hand in hand with the progress of the human mind. As that becomes more developed, more enlightened, as new discoveries are made, new truths discovered and manners and opinions change, with the change of circumstances, institutions must advance also to keep pace with the times. We might as well require a man to wear still the coat which fitted him when a boy as civilized society to remain ever under the regimen of their barbarous ancestors.

I nudge Ian next to me. “Barbarous ancestors,” I loudly repeat, reading over the text once more. “That’s you.”

“What?”

I am amused at the fact that history defines Ian as my “past enemy,” so to speak. “The British. Your kind.” Ian is so pro-American that the look on his face is priceless. I look him up and down. “You know– you are looking a little barbarous at the moment.”

“I’m sure that I do.”

After the bike tour we head back to the Sheraton Hotel where we are staying. Ian has had a hard week at work and is exhausted. He crawls into bed to take a nap. I’m pretty tired as well, but I know I haven’t quite completed the daily exercise I am supposed to be accomplishing while undergoing chemo. I inform Ian I’m heading to the hotel gym to do a bit more cardio. He offers to come with me but I shake my head:

“No– stay here and sleep. I’ll be back shortly.”

“You sure?”

“Yes. I’ll be fine. Get some rest.”

This isn’t a test of some kind, although I admit I am bothered by the reality of the situation– meaning I would love to relax and take a nap but don’t feel as though I have the right to. I haven’t done enough exercise yet. Perhaps Ian detects an involuntary note of something in my voice for he speaks up again.

“Forget it. I’m coming with you.”

“No– stay here and sleep.” I pause; I know what’s coming next but the words leave my mouth in spite of myself. “You’re not the one who has to watch out for his white blood cell count.”

This sentence gets Ian on his feet. “Let me change into my gym clothes.”

“No.”

“Yes.”

This time I can’t hold his gaze. All I want is the opportunity to have a “normal” relationship yet I find myself examining my half-wig every chance I get, going as far as sleeping with it (Ian has told me more than once I could sleep however I wanted, but feeling attractive and comfortable without a full head of hair is just not going to happen) and I’m always glancing at the clock to time my chemo fasts accurately (can’t eat anything two and a half hours prior and after taking the 125 mg of Temodar.) It doesn’t matter how hard I’m trying– there is nothing normal about all this.

Ian is still gazing at me. “I’m proud of you, Kat.”

“Why?”

“For being so strong.”

“It’s not like I have a choice.”

I’m getting upset because there is no other way to put it. I’m stuck in a Do or Die situation– literally. I am being strong because I do not have any other options. I used to think there was no way in hell I’d be able to live life “normally” or not spend my days crying in my bed should I ever be diagnosed with something so horrible. It becomes a different story once you are faced with the morbid reality of the situation: I have to be strong because if I’m not– I lose, and losing implies dying in this case.

I try hard not to get more upset. “I have to be strong, because if I don’t stay strong– I’ll die.”

“Don’t say that.”

My voice rises. “Well it’s the truth!” It is– isn’t it? No use being in denial about it. “I can choose to be strong and fight– or I can crawl up in a hole and let myself die!” My voice gets a tad louder. “And I don’t want to die!” I grab a bottle of water on the TV stand as this sentence repeats itself in my head– over and over again. “Now let’s go work out.”

Doing some cardio downstairs seems to jolt Ian with energy, and in my case, relaxes me a bit. By the time the evening rolls around, we are both looking forward to our reservations at The Gibson– a speakeasy located on 14^th street in downtown DC, which, according to my friend Heather, looks nothing like a bar from the outside– just a shady nameless black door welcoming you in true 1920’s fashion. A little more and you’d practically expect the bouncer to ask you for a password.

That we aren’t, however we are both carded– including Ian who isn’t quite used to the way the American bar scene functions with their rigid 21 year-old rules. A bit ridiculous if you ask me– considering the rate of alcoholism is actually higher in the US than in Europe, where teenagers are actually allowed to enjoy an occasional glass of wine with their parents and don’t start binge drinking once they leave home.

The next day my spirits are down again. Ian is flying back to work in Orlando and I have five gloomy days of radiation to look forward to. There isn’t much of a positive spin that I can put on these facts. That and once I get home, I will have to face a truth that I’ve been covering for the past two days. In fact, once I do get back to Alexandria in the late afternoon, I call Juliette at once because I know this particular step isn’t something I can accomplish by myself.

As usual she immediately picks up. “Hey.” A familiar ball of distress is choking me up again, which Juliette senses. “What’s wrong?”

“Tell me to go wash my hair,” I answer before breaking down in tears.

“What do you mean?”

“I haven’t washed it in four days.” The tears won’t stop pouring out now. “I don’t know how much of it will be left once I do. It just keeps coming out.”

Juliette stays silent for a few seconds. “You have no idea how much it pains me to hear you suffer like this. Remember what I once told you– I will gladly shave my head if you want me to so you don’t feel so alone. Just say the word.” She gives a long pause– enough time for me to swallow more tears and mumble a small no way. “In regards to washing your hair,” she carries on, “you’re just gonna have to do it somehow. It’s going to be one of the most horrible moments in your life but you just need to get through it. Aren’t you the one who keeps saying you don’t have a choice but to be strong?”

“Yes.”

“So go be a little bit stronger for the next hour. Afterwards you can cry for however long you want. Now go wash your hair and call me afterwards.”

We hang up. Funny how I started this blog entry describing how some particular memories are created more vividly than others. I don’t think I’ll ever remember taking a shower the way I will always remember this one. Standing naked in front of that stream of hot water, crying and trying to will myself into ducking my head underneath the shower head. Now I’m counting out loud: I will wet my hair at the count of three. One, two, three– GO. I don’t move. Try it again. One, two, three, four….. One, two, three…? Three? One, two– I finally feel the warm water wet my scalp, accompanied by more hatred towards the Fucking Tumor and definitely more tears– with definitely less hair.

My hair…

September 14th – 15th 2011

2011-12-02T06:24:00.000-08:00

September 14^th – 15^th 2011 (Baltimore, MD)

There is a first for everything when you start getting treated for cancer. The first time you swallow these damn chemo pills; the first time you feel nauseous because of treatment; the first time you experience the after-effects of radiation blasting away at your head; the first time you use the “cancer card” to navigate through whatever bureaucratic bullshit you have to navigate through; the first time you look down the shower drain and notice a much-too-big clump of hair lifelessly clogging the drain.

So it’s starting– you really are going to lose your hair.

Perhaps part of me was still hoping it wouldn’t happen so I am a bit taken aback. I stare on at the shower drain, hoping the troubling vision will dissipate away on its own like magic– before I finally grab the hair and flush it down the toilet. Out of sight, out of mind.

Not quite.

As I examine myself in the mirror, I can’t really tell I am missing more hair– but to my horror, I realize that every time I touch my head, more clumps of hair come out in my hand. Every woman’s ultimate nightmare from hell. I keep thinking it’ll eventually stop– like if I comb my hair, it’ll get to a point where whatever needed shedding will be shed. And that’ll be that. But the shedding doesn’t stop. I realize it’s not going to. I could stand here and literally watch myself grow bald if I wanted to. I rest the comb down on the bathroom sink and stare at my reflection. Part of me wants to scream out in horror. Another part of me wants to cry. Another part wants to rip out the rest of my hair in rage. Finally, the rest of me wants to smash the mirror and let glass splatter everywhere in the bathroom.

I somehow manage to remain composed.

It’s just hair. It’ll grow back. This was expected.

Right?

The wigs I’ve ordered online are in Winter Park at the moment. However, Ian is coming to visit me in DC for the week-end as I am not up to traveling and we are trying to see each other every week-end. Since my energy level in general has been adequate, I’ve organized a fun visit of the capital, complete with a guided bike tour of the monuments, trips to the museums, and a sexy evening in downtown DC at a 1920’s speakeasy known as The Gibson– an establishment highly recommended by Heather, a good friend of mine who’s been kind enough to be driving me from Alexandria to Johns Hopkins here and there.

At the rate my hair is falling out, my clip-on ponytail will be useless soon because I’ll be needing a lot more coverage than what it offers. I am pissed off at myself. Why the hell didn’t you prepare yourself better? There are like a thousand people out there who’ve warned you about hair loss, and NOW that it starts to really fall out you have a romantic week-end planned ahead in two days?

I frantically dive into my room, dig out my laptop, and get online to order something, anything to conceal this new side-effect of chemo/radiation. There’s no way in hell I’m going to be half-bald during my upcoming rendezvous in DC. I finally decide on a long, wavy half-wig– a wig that’s meant to blend in with my own hair, which I gather I will still have enough of. No more touching and combing my hair though– until Sunday evening anyways, and using shower caps while showering until then will be a necessity. This particular half-wig is meant to be clipped on to my own hair and the smiling model on the website is wearing a headband, which I’m guessing conceals the line of the half-wig. Overall, the effect is extremely natural as her own forehead’s hairline is showing in the picture. Perfect– for now anyways. I ignore the thought that my hair situation is, as predicted, disintegrating quickly: a clip-on ponytail after the surgery, a half-wig two weeks into treatment, and I’ve become aware on some level that the next step will be a full wig.

But I’ll cross that bridge once I get to it.

On Friday morning, the half-wig arrives. I try it on. It matches the color of my hair perfectly. With the help of a hairband, no one can tell the hair is fake. In fact– I look like one of those Austin Powers chicks from the 1960’s with the big voluminous hairdo that poofs up after the hairband. I can totally pull off this look. I manage to smile. In fact– I can totally rock it.

Romantic escapade in DC salvaged.

September 13th 2011

2011-11-29T14:29:00.000-08:00

September 13^th 2011 (Baltimore, MD)

I’ve been back in Alexandria, VA for a couple of days now after spending the week-end in Orlando with Juliette, Mark and Ian– a week-end that ended just as wonderfully as it started. Ian and I have left on excellent terms (yes, he has professed his love for me and rather quickly, but it’s not scaring me for I’m falling for him pretty hard myself– at the risk of making all of you male readers nauseous.) This time around, Juliette isn’t here in Alexandria with me as she is working in Orlando this week but with the help of a few amazing friends living in the area, I’ve managed to organize my rides over to Johns Hopkins without any problem.

It’s now around nine in the morning. I am presently enjoying my morning cup of coffee in the company of my laptop while charging my iPod– so I can go for a run outside before my ride to Johns Hopkins arrives.

In the midst of writing an email, I literally jump from my seat. All of a sudden, I feel extremely off. Claustrophobic and light-headed. Something isn’t right. Something is horribly wrong.

Fuck. You are about to have another seizure.

I remember nothing of the first one but now, as I remain conscious, I know exactly what is about to happen. And why is this about to happen? No time for questions. Kat– think, and think quickly. Have you taken your Keppra yet? The answer is no. Find the Keppra. Now. I frantically dive into my purse looking for the meds but it is useless– lipgloss, wallet, hand sanitizer– just no anti-seizure drugs. The seizure is progressing. Now my left hand is swatting in the air uncontrollably. Of course– makes perfect sense– the tumor is on the right side of my brain.

But I’ve been doing everything right so far. Why is this happening to me? I’ve been exercising, taking that damn Keppra, doing radiation, taking the Temodar and still keeping a positive attitude in the midst of it all. So why is this happening to me????

WHY, GOD DAMN IT, WHY?????

The world around me slowly stops making sense. Oh God no, please no, not this again, please God, no….not this again…. It occurs to me that I need help quickly and need to address someone other the All High and Mighty. I grab my Android phone to dial 911.

Focus, Kat– just focus. Call 911. You HAVE to call 911.

But I can’t. No matter how hard I try, it doesn’t work. I can’t physically coordinate my hand movements to dial these three simple digits on top of experiencing the panic of another seizure. The modern Android phone has become useless. Well what about your ancestors two hundred years ago? They didn’t exactly carry cell phones tucked inside their corsets.

“Help!” I yell at the top of my lungs. “Help me!”

The screen door out to the balcony is open. A few seconds later, a man responds. “Hello? Are you ok?”

“No! I need help! Call 911! I need a doctor!”

I drop to my knees on the carpeted floor so I don’t hurt myself, shutting my eyes as I lay down flat on my stomach.

I remember feeling powerless in the past– feeling powerless when looking over the classical mechanics section of the Physics PhD qualifier exams; feeling powerless one early morning after pulling an all-nighter and realizing there is no way in hell– even if I somehow incorporate time dilation– that I can finish studying for that test, correct those lab reports, and finish these physics problems in the next few hours; feeling powerless when my car slipped in snow on the highway as I was driving to Vermont in Christmas of 2002, ending up in a small ditch. Now none of these moments come close to this new definition of the word powerless.

The stranger outside who answered me has no idea which apartment I’m in. How is he going to find me? I need a doctor. I realize I might not get medical help until my ride to Johns Hopkins arrives in a couple of hours. My breathing is heavy, my heart is racing and pounding into my chest with a strength I didn’t know it even possessed; I feel Wolfie’s humid nose nudge my cheek. Go get help Wolfie! Naturally he doesn’t stop probing around my face. Stupid cat. The seizure is short but reality is quickly fading away. It would be so easy to pass out right now. In fact it is almost comforting to think about: escaping reality, because this is not a reality I wish to face.

However at this moment a particular scene from Alive– the movie that tells the story of the 1972 plane crash in the Andes– comes to my mind: the scene where four of the survivors are trekking back to their plane fuselage in the midst of an atrocious storm, exhausted and starving. As one of them decides to give up and falls to the ground, he is pushed to carry on by the leader of the expedition, Nando Parrado, who furiously grabs him by the collar and barks out the following order:

“Get up and walk ten steps!”

It is this powerful image that yanks me back to reality. Get up and walk ten steps– don’t give up. You’re not allowed to pass out. Seek medical help NOW.

I manage to gather whatever strength I have left inside me. “Help me!” I yell out again from the carpet between two heavy breaths. “Somebody help me!”

The same voice, still coming from outside, responds right away. “Which apartment are you in?”

“302!”

“Ok.”

A few minutes pass until another voice speaks out, this time arising from right outside the apartment door. “We are here. We called 911. Can you let us in?”

I crawl on the floor towards the door. To my horror I realize my left hand is closed in a fist and not only can I not move my left arm at all but it has more or less become a dead weight. I can’t even feel it being dragged on the carpet.

It’s temporary, Kat– remember how you couldn’t move your left side after the surgery?

Somehow I manage to let the men in. One of them is wearing an eye patch. “We were right outside when you yelled. Help is on the way.”

I thank them and ask them to bring my purse over. “I have some medication I need to take.”

Like magic, the bottle of Keppra is suddenly back at the bottom of my purse again. One of the men brings me a glass of water. My left arm is regaining sensation and starting to tingle. As expected I can soon move it again, though it takes a while for it to feel normal. I explain to the men that I recently had brain surgery– they can probably tell anyways from the shaved strip and scar on the right side of my head. Soon enough the paramedics arrive, ask for my medical history and take my vital signs. They want to take me to the ER but I am hesitating. I have a radiation appointment scheduled at around one-thirty and what is the ER going to do? Scan my head and inform me it looks like I have a brain tumor?

I ask one of the paramedics to speak with my sister. I hear Juliette’s concerned voice through the phone asking for my vital signs and asking the paramedics to give me some Ativan– a muscle relaxer that is meant to prevent another seizure if you are about to have a second one. The paramedics refuse, stating they can only administer this drug if I am in the midst of having a seizure as opposed to exercising precautionary measures. I speak to Juliette briefly.

“Let me talk to Doc and Dr. Wilbur and see what they want do,” she says. “Personally I think going to the ER would be a waste of time. Going to your radiation appointment is so much more important.”

She hangs up. I make small chitchat with the paramedics as I wait for Juliette to call me back. They ask me details about my surgery, treatment and diagnosis.

“Sounds like your life completely turned around,” one of the girls comments.

“It’s been quite the One-Eighty.”

Finally my cell phone rings with Juliette’s name flashing as the caller. “Head over to Johns Hopkins,” she tells me. “Doc has spoken with Dr. Wilbur. They want to see you right away.” She can tell I’m shaken up. “Kat– it’ll be ok. Doc said it was expected.”

“What was?”

“You experiencing another seizure. Your brain is reacting to the radiation it’s receiving. Most patients prone to seizures do have others when undergoing treatment. Doc was just hoping it wouldn’t happen in your case.”

“Others?” I repeat in disarray. “Others–”

The idea of experiencing something like that again is so horrific that I can’t even finish my train of thought. Juliette speaks up again.

“Doc is planning on upping your dosage of Keppra to resolve this problem.” Originally I had hoped it’d be the other way around– slowly coming off this drug but I guess doing this in the midst of undergoing radiation is not the way to go.

“So that’s what caused the seizure? The radiation?” I try to swallow my distress. “Not this Fucking Tumor growing back?”

“Nothing is growing back. Radiation is causing brain swelling near the area of your cerebral cortex– hence the seizure. Ok?”

“Ok.”

“How’s your left arm?”

“Still a bit numb but better.”

“Call me after your appointment with Doc.” Juliette pauses once more. “You all right?”

“No, I’m not.” I pause. “But I will be.”

September 9th 2011

2011-11-27T12:42:00.000-08:00

September 9th 2011, (Orlando FL)

I am a bit nervous as Juliette and I make our way over to the Baltimore airport after my radiation session at Johns Hopkins today. First, Ian has bought me a plane ticket to visit him for the next two days. Based on the intensity of our last conversation, this week-end has the potential for numerous interesting outcomes– hence the jitters on my part. Yes, I am still stunned. Ian and I haven’t spent that much time together– not to mention that during the few dates we did have, I know I wasn’t acting out like my full-blown “Kat-self” because there was always something cancer-related haunting the back of my mind. Whatever I have shown him, however, seems to have intrigued him enough on some level.

Secondly, the instructions on my Temodar supply specifically mention the medication is light-sensitive and should be kept in a dark bag, which I have been doing; however no one at Johns Hopkins seems to be able to answer the question as to whether or not I should be wary of the x-ray machine while clearing airport security. My intuition tells me yes– plus one can never be too careful. So I am mentally preparing myself for bravely marching into the airport, informing the staff of the medication I am taking (hence identifying myself as a cancer patient, which will be extremely unpleasant) and forbidding them to x-ray the Temodar as they normally would.

As expected, I run into problems clearing security as the Temodar sets off the security alarm when screened separately– maybe because of its radioactive nature. A lady brings me aside in a glassed boxed area and proceeds to pat me down. As she touches my hair, I inform her that I am wearing clip-on extensions.

“Really? I should get some then. They look great on you.”

“I don’t have much of a choice.” I motion to the bag of Temodar sitting on a chair. “That’s chemo.”

“You mean chemo for cancer?” she asks as I nod. “Breast?”

“Brain.”

She looks both shocked and taken aback, immediately stating how sorry she is. “Well, you would never be able to tell.” She wishes me the best and sends me off with more get-well wishes.

By the time Juliette and I land in Orlando, it is around 8 pm and I’ve only grown more nervous at the prospect of seeing Ian again. He is waiting for me at the exit gate just as I remember him but now, somehow, he looks different. He looks different because he knows about everything that’s going on. The scene that follows is a bit blurry in my head– I do remember running up to him though and him taking me his arms, greeting me with an ardent kiss. As he kisses me, over and over again, Juliette looks over us and raises an eyebrow.
"I think he loves you."
I look back at Ian who doesn't say anything as I start to ponder the truth behind these words. Can you really fall in love with someone a week after meeting them? I will spare you the rest of the details of the Hollywood reunion scene that we act out in the Orlando airport– although as I look back on it today, a particular famous photograph titled The Kiss by Robert Doisneau comes to my mind– (http://www.nocaptionneeded.com/wp-content/uploads/2007/07/pub-domain-kiss-ww2-197-l-copy.jpg).

Since Mark is here as well to pick up Juliette, the four of us decide to meet up at the Wine Room on Park Ave.– a small cozy wine cellar located right next to Luma’s. This leaves Ian and I with a bit of “alone time” as we drive over to Winter Park from the airport. Perhaps I am not being trusting enough but I can’t quite let go of some uncertainty forcing a thousand of questions to sprout inside my head. Who is this guy? Is this too good to be true? Why does he want to date me when I have cancer? Doesn’t he want a healthy girl-friend? What will happen when I lose the rest of my hair and become ugly? Doubt is probably written all over my face because Ian easily picks up on it.

“What’s wrong?”

“You do realize I am about to go through the hardest year of my life.”

“Yes.”

“You just met me last week and want to stand by my side through this.”

“Yes.”

I sigh. Does he not get it? Does he not get that I had brain surgery? Does he not get that I’ve been diagnosed with brain cancer?

“Sweetheart–” I grab the curls of the clip-on extensions off my collarbone. “This isn’t my hair.”

“I don’t care.”

I touch the headband camouflaging the shaved strip and scar on my head “And there’s a reason why I’m wearing a headband.”

“I don’t care.”

“It’s only going to get worse!”

“Kat– I don’t care!” Ian repeats more strongly. “I’ve already made up my mind about you. You’re mine.” He pauses. “And you will always be beautiful to me.”

This last sentence finally shuts me up.

Dinner at the Wine Room is fun for the most part– except near the end when I spot a chain smoker at the outside table next to ours, inhaling one cigarette after the other. His friends are laughing and making jokes about how he’ll probably end up dead soon. As I watch this guy give into an addiction that could likely cause him to develop cancer, I feel myself grow more and more powerless. I wish I’d been given the choice to control the Fucking Tumor invading the right frontal lobe of my brain. Juliette is the first one to pick up on my disarray. She looks at the chain smoker and back onto me.

“He’s the one who should have that Fucking Tumor– not you.”

I try as hard as I can not to get upset but it’s too late. Sitting next to me, Ian immediately steps in. “Don’t look at him. Look at me.” He wipes a tear off my cheek. “We’re going to get you through this– remember what I said?” I try to nod. “Yes?”

“Yes.” I carefully wipe another tear forming in the corner of my eye. After a few more seconds, I speak up again. “Is my mascara running everywhere now?”

From across the table, Juliette smirks. “No, Kat– you’re fine.”

September 8th 2011

2011-11-23T16:26:00.001-08:00

September8th 2011 (Baltimore, MD)

Normalday of radiation treatment today– Juliette drives me to Johns Hopkins and backto Alexandria, VA. We catch up on ProjectRunway when we get home and eat dinner as my cell phone charges in thebedroom near-by. When I finally decide to glance at it, I immediately notice aseries of missed phone calls from Ian.

Ipick up my cell and walk back into the living room. “That’s strange– Ian calledlike six times and keeps texting me to call him back.”

Wehad a slight “miscommunication” earlier that day– when I’d mentioned I couldpotentially take a week-end off from “work” and fly back for a week-endmid-September to Orlando so we could spend some time together. I hadn’t reallyheard anything back and had taken as a sign that perhaps this guy wasn’t sointerested in flourishing the relationship after all.

“Maybehe changed his mind about a mid-September rendezvous?” Juliette suggests,curled up on the couch and attacking a bowl of crunchy red grapes.

“Hmm.”

Lastthing I’d heard from Ian was that my PhD work should come first, so I couldpermanently move back to Winter Park, FL sooner– meaning in less time than sixweeks. Yes on the logistics of it all–but being a romantic at heart also implies acting on at least a few impulsivecharacter traits and breaking the rules a little– ie: a romantic week-end hereand there isn’t going to kill anyone and certainly not going to interfere withmy PhD work.

Yeah– cause you’re not reallyworking that much anyways– you’re getting radiation treatments for somebullshit brain tumor at Johns Hopkins, remember?

SomethingI kind of have to remind myself of here and there.

“Yougonna call him back?” Juliette asks.

“Ina bit.”

Isit down and finish eating dinner, then notice that my phone is ringing againwith Ian’s name as the caller. This time I pick up.

“Hey.”

“What’sgoing on? Been trying to call you all afternoon and evening.”

Isuppose I’m getting moody. I am not tolerating the radiation treatments verywell and always feel “off”. Plus I like romance. Telling me to work instead oftaking a couple of days off to spend quality time with a potential futureboyfriend is not sitting that well with me.

“I’mjust focusing on work like you suggested,” I answer dryly.

“Don’tbe like that.” Ian pauses. “Kat– is there anything that you want to tell me?”

Thesecond I hear these words my stomach literally drops. “Why are you asking methis?” I spout out. I spring up from the couch and head to the bedroom,shutting the door behind me. Ian meanwhile is staying silent. “Ian– why are youasking me this?” I repeat the question more strongly into the phone.

Ofcourse I already know why he’s asked me this question– my intuition tells methat somehow, he knows. He knows you havea brain tumor. He found out. He knows, Kat. He knows you have brain cancer.

“Jefffound Juliette on Facebook,” Ian finally answers. “He forwarded me the link toyour blog.”

Theminute I hear these words, tears form into my eyes. Here you go– one more thing this Fucking Tumor is going to screwup in your life.

“Fuck!”is the first word that comes out of my mouth, repeated about five or six othertimes in a row. Ian tries to interrupt my verbal diarrhea but with no success.

“I’mso sorry,” I finally manage to say, breaking down in tears. “I just wanted youto get to know ME first. Like, me. Who I am. Before all this craphappened. Maybe I wasn’t being fair. I’m sorry.”

Isigh. It doesn’t matter anymore. I really don’t expect him to hang around now. Who would do that? Cancer is somethingyou go through with someone you’re married or engaged to– or at least when therelationship is heading in that direction.

“Whydidn’t you tell me what was going on?” Ian asks.

“How!? When!?”I blurt out, getting more upset. “How do you announce that to someone you’vehad three dates with? Between two sips of our glasses of wine last Sunday?” Ianis silent once again. “How about like this: oh, and by the way– I had brain surgery three weeks ago and I’m not really going back to the west coast towork– I have to get treated with radiation at Johns Hopkins for the next sixweeks?”

“Isthat where you’re at now?”

“Yes.”

“Ifigured as much.”

“I’mreally sorry I wasn’t honest.”

“Iwould’ve probably done the same thing you did.”

Iam preparing to say my good-byes to Ian. “I really enjoyed our dates together.Go find yourself a nice, sweet girlfriend who is healthy and not about to gothrough the toughest time of her life. That’s what you deserve.”

It’sIan’s turn to get passionate on the phone. “Kat, who do you think I am– some 21year-old geezer?” My turn to stay silent. “I already told you how I felt aboutyou. I wish you’d told me earlier what was happening.”

“Why?”

“BecauseI want to be there for you.”

I want to be there for you.Seven words I never thought I’d hear from a man I just met last week. I amstunned. Shocked. It takes me a whileto respond because what Ian is declaring is not registering at all; rather,denial takes over me again.

“Ian–you really don’t have to do this!” Ipractically scream into the phone. “I’m going to be fine regardless. I havetons of support! I have family and friends! I’m under the best medical carepossible!” I catch my breath. “Go and have fun– you just moved to America forChrist’s sake–”

Ianinterrupts me at once. “Kat– I am not going anywhere–”

Onceagain I cut him short. “Go find anothergirl, Ian– a girl who doesn’t havebrain cancer! A girl who’s not aboutto lose all of her hair! A girl who’s notgoing to get MRIs every two months this year! A girl who’s not going to be swallowing chemo pillsfor who-knows-how-long!”

“Idon’t want anybody else. I just want you.”

Ifeel like I’m banging my head against the wall. I don’t get it but a part of meis now slowly grasping the reality of the situation. I’m not sure why but a man I’m actually crazy about(a rare situation) wants to battle cancer by my side. The situation feels sounreal that again, I can’t formulate any words out of my mouth.

“Kat?”Ian says. “You still there?”

“Ithink so.”

“Sowill you let me be there for you?”

Iam numbed down from the intensity of the past few minutes. “Ok.”

“Soyou want to see me again?”

“Ok.”

“CanI fly you to Orlando this week-end?”

“Ok.”

“Gofind a flight and call me back.”

“Ok.”

Ihang up, still in shock and step back out into the living room probably lookingdazed.

“Whathappened?” Juliette asks from the couch, still crunching away on her redgrapes. “That was a long conversation.”

“Ianknows,” I simply announce.

“Knowswhat?”

“Heknows about the brain tumor.” Juliette sits up straighter on the couch. “Heknows– and he wants to be there for me.”

“Areyou serious?”

“Yeah.Pretty incredible.”

“Wow.”Juliette looks amazed as she gets up and gives me a big hug. “I know how muchyou liked him to begin with. And now thison top of it?” She smiles. “Looks like this one might actually be a keeper.”

Ismile back. “Yeah. Looks like this one might be.”

September 6th – 7th 2011

2011-11-19T16:17:00.000-08:00

September 6^th – 7^th 2011 (Baltimore, MD)

Juliette and I have been back at Johns Hopkins for a couple of days now to continue my radiation treatments. I will be getting blood work drawn every week to monitor my white blood cell count (indication of infection), red blood cell count (indication of anemia) and platelets count (indication of body’s ability to repair wounds). I will also be meeting with Doc and his nurse Rob to discuss treatment side effects and determine how well my body is handling both the radiation and chemotherapy.

The first time I get blood drawn, I decide to wear my pink pumps. Why not. I can feel the nurses stare at my feet as I click-clack myself over to the station as someone shortly takes my vital signs (weight, blood pressure, heart rate, temperature.) After a while, another nurse walks by, telling me I might not make it out of there walking in those high heels.

“What do you mean?” I immediately respond. “I feel fine.” It’s just a flesh wound, right? “I’m fine. I’ll feel fine in a bit too. It’s not like you are drawing pints and pints of blood.” She tries to interrupt me but I carry on. “I’ll be able to walk after this. I’m not taking my heels off.”

“No– I meant that we are all admiring your pink shoes from afar and each want to own a pair.”

There is no way to respond to that comment but with a large, genuine smile. Yes, the pink pumps do rock. No, I don’t know where you can get them– it would appear as though they are no longer available, alas! But whomever wears an 8.5 shoe size and can handle four-inch heels is more than welcome to borrow them whenever they like.

Later, when Juliette and I meet up with Doc, my radio-oncologist, he takes one look at my feet and declares he’s never seen shoes this glamorous before in the basement. (I would’ve probably left out the in the basement part but that is his call.)

“And you still look like you have a spring in your step,” he adds as I sit down in the exam room.

“Still exercising every morning, Doc.”

At first he makes no comment, then begrudgingly he admits that he never exercises himself– which is why he raised a dubious eyebrow at first when I mentioned I’d be running every morning before getting radiated for this stupid brain tumor.

“Are you experiencing any headaches at all?” Doc then asks.

I nod. Unfortunately yes. Radiation is probably one of the most unpleasant experiences I have ever encountered in my life so far. It’s not really the radiation treatments themselves that are harsh– it’s how I feel afterwards after these photons blast away at the right side of my brain. I feel different. Off. Like something isn’t quite right….something that wasn’t meant to happen to my body has happened. Something unnatural. It’s hard to really think or focus, and though I haven’t tried it, I’m not sure how much calculus or physics I would be able to handle five short minutes after a radiation treatment.

Headaches could be a sign of brain swelling, which could be reduced by putting me on steroids– although this drug is so nasty (side effects include rage outbursts, emotional labile, muscle weakness, immune system suppression, just to name a few) that every doctor advises me to hold off going on steroids if possible.

Doc administers a quick neuro exam to me, after which he looks me up and down. “If I ever walk into the room and see you moaning and groaning, holding your head under a blanket because the headaches are so bad– then yes, steroids it is. But for now I wouldn’t touch them.” Juliette and I both nod in agreement. “When do you have headaches usually?”

“Sometimes in the morning,” I answer. “But my headaches usually start in the car on the way back from Johns Hopkins. Right after radiation.”

“Are you sure it’s not because of how your sister is driving?”

I see Juliette smirk from the corner of my eye. “I’m sure she drives much better than you, Doc,” I retort at once.

“Actually I’m sure she does. I drive way too slow on the highway. I’m always driving the car that everyone else passes.”

A comment that sends both Juliette and I laughing on the way out of the Weinberg Building.

Back in the car I recline the passenger seat and lay down as Juliette drives us back to Alexandria. I’m not tired enough to fall asleep, so we continue to make chit-chat.

“How are things with Ian?” she inquires.

I pause. He’s been calling me every day, and every day I find myself telling more and more lies about where I’m at and what I’m doing: Sure I’m in Richland WA, sure I’m working on PhD research, taking radioactive measurements and doing simulations, sure I’ve started chapter 2 of my dissertation….blablabla.

I glance Juliette’s way. “What if he Googles me? This blog is probably all over the Internet by now.”

“Well, he hasn’t by now– so why would he?”

“True.” Still though, I hesitate. “You don’t think I should just tell him what’s going on?”

“How many dates have you had? Like three?”

“Something like that.”

“What are you going to do– blurt out on the phone you’re not really on the west coast and getting treated for an astrocytoma brain tumor at Johns Hopkins?”

I try not to think about it too much as we get home and I soon pass out in bed. I guess I can always think about that tomorrow. Isn’t that what Scarlet O’Hara from Gone with the Wind always says?

"I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.

After all... tomorrow is another (radiation) day."

September 4th 2011

2011-11-08T13:03:00.000-08:00

September 4^th 2011 (Orlando, FL)

Juliette and I are leaving bright and early tomorrow back to DC for my upcoming four days of radiation at Johns Hopkins. Ian has asked me to go wakeboarding with him today– an offer I have turned down for a couple of reasons. First, I feel well enough to do some PhD work, which I know I will need to carefully time throughout the next six weeks of treatment with the vacation donations I’ve received from work (thank you again everyone.) I can be as optimistic as I want but I also know radiation and chemo will be harsh on my body. There will be some days I’ll probably want to crawl in a hole and shut the world out.

Secondly, I’m pretty sure hair bands and clip-on extensions don’t go hand-in-hand with sporting on my red bikini and jumping into a lake. Ian doesn’t know the truth about my condition, nor does he know I’ve lost hair during the surgery. Fine– kudos to hair extensions but we’ve only had two dates. I’m pretty sure blurting out “I have cancer!” between a bite of crab cake and a salad course over dinner is way too much information to spout out for the time being. He also doesn’t know I’m leaving Florida tomorrow for six weeks. I think he likes me, and I certainly do like him, so what to tell him exactly is something I need to ponder before making a final decision.

“I have to work today,” I finally tell Ian over the phone. “Go wakeboarding without me. We can meet up later for dinner if you like.”

“Ok. I’ll come by at around seven?”

“Sounds good.”

For tonight Juliette lends me what I’ve grown to call her “Audrey Hepburn dress”– a classy, short, high-collared white little number outlined with beautiful navy blue trimming. Ian and I head down to Park Ave. and grab a table at 310, where I proceed to order the same seafood salad I had with that eccentric millionaire in 2008– the “Guy-with-the-Pills” (refer to August 6^th 2011 blog entry.) As Ian and I make conversation, a constant reminder haunts the back of my head that I need to tell him I’m leaving Florida tomorrow. It’s either that or blurting out that I need to follow a six-week radiation treatment course for some bullshit grade 3 brain tumor. This is only our third date. I take a sip of wine.

“Ian, I–” I shut up immediately as he gives me an inquisitive look. “I got a call from my boss today. I need to go back to the west coast and finish up some PhD work for a while.”

“You’re joking. For how long?”

“I’m not sure. Possibly up to a month. Up to six weeks max.” I pause. I would never expect a guy with whom I’ve only had three dates to patiently wait for my return for a month and a half. “We can keep in touch if you like, and see each other again when I come back.”

In what condition I will come back exactly after getting treated for this brain tumor is another question I am choosing to ignore at the moment.

Ian looks astonished. “Keep in touch?” he repeats.

“Yeah. If you want still want to see each other next month–”

He interrupts me at once. “Kat– you’re brilliant, beautiful, witty, sexy, educated and ambitious. What else could a man possibly want in a woman?” A cancer-free girlfriend? “I’m already crazy about you. I never know what’s going to come out of your mouth next. I like you very much.” I stay silent. “If you need to go work, go work but just know that I’ll be right here waiting for you when you come back.” Again, I don’t say anything. “Frankly, I’m astonished you’re still single.”

I try to smile. “I’ve been known to be picky.”

That part is the truth. I’ve always considered bad dates/boyfriends to be an utter waste of time. Why invest in a relationship leading nowhere when I could be finishing my PhD in Physics, working on Minute Waltz (my novel), learning Beethoven’s Sonata Pathétique or trying to finally land that single axel?

“Can I call you when you are away?” Ian inquires.

“Of course.”

Once again, I find myself wishing I hadn’t met him under these horrible circumstances– although strangely there is another faint voice that reminds me I wouldn’t have met him if it weren’t specifically for these circumstances.

We end the evening at a chic blues club in downtown Orlando before Ian drops me off like a proper gentleman back at Juliette’s. When he kisses me good-night, his hand reaches to the right side of my head. I pull away. The only thing on my mind now is whether my headband has moved and if surgery remnants are now in plain sight.

I get out of the car. “Good night.”

Apparently I still look normal because Ian kisses me again.

“Don’t forget about me,” I playfully add.

“Don’t forget about us.”

Back inside the house, Mark and Juliette are comfortably watching TV on the couch.

“You’re home late, young lady,” my future brother-in-law jokes.

I sit down in the living room and sigh. “Guys, I really like him. What the hell am I suppose to do? I can’t tell him what’s going on, it’s way too soon.” They both stay silent. “When he kissed me just now, he touched my hair and all I could think about was whether some shaved strip was showing on my head.”

Juliette rolls her eyes. “You can be one of those ‘Don’t touch my hair!’ girls. Tell him you have a weave or hair extensions or something.”

Pretend I have a weave? This is how I’m suppose to build a relationship?

I shrug my shoulders. “I suppose if it gets serious I’ll have to tell him what’s going on.”

Mark and Juliette both nod.

“Now go to bed,” Juliette orders. “We have an early flight to catch tomorrow and you have radiation at Johns Hopkins tomorrow.”

“Yes, Dr. Mizouni.”

September 3rd 2011

2011-11-03T13:06:00.000-07:00

September 3^rd 2011 (Orlando, FL)

The next day I feed a hung-over Leela an omelet in the kitchen, after which Juliette and I proceed to go for a short run around Winter Park.

“Excited about tonight?” she asks as we jog past Panera’s.

“Yeah.”

“For the cocktail party or your new British suitor?”

I pause as we turn onto Interlochen Street– a hesitation that probably answers Juliette’s question, though I still try to sound casual:

“Both?”

“Whatcha wearing?”

“Probably the black cocktail dress with the pleats in the front?”

“Yes. Do that one.”

It is comforting to be discussing fashion, dates, and making evening plans as though no horrible diagnosis interrupted what now seems like a such far-away life– a life in which Juliette made a living as an ER doctor while planning a future with Mark in Winter Park, Sophia worked on her PhD in French Literature in Boston, and I was stationed across the country in WA state preparing to defend a PhD in Physics in November. We are trying to establish, I guess for a lack of better terms, a “new normal” in our lives.

Ian is coming over at around seven. This time I manage to style my hair without using a headband– just a pretty blue flower clipped on the side of my head tastefully hiding the surgery remnants. I try to get lost into the girly charm of getting ready for a first date in front of the mirror while ignoring fluctuations in my thoughts pointing out that I’m not being honest. A few strokes of mascara manage to bury that voice away.

It’s just a cocktail date. Go out and have a good time.

Just be YOU.

As I slip into a pair of heels, the sound of the doorbell resonates across the house. From the living room, I hear Mark ask me if I would like him to open the door so I can make a proper entrance.

“That’s ok. I got it.”

In the doorway now stands the tall good-looking British gentleman, dressed very well, smelling nice and looking quite composed– though I hope he’s at least a bit nervous.

“Hello Beautiful.”

He leans in to kiss me on the cheek and thanks me for inviting him along for the evening. I smile casually and let him into the house. Juliette gives us the address to the cocktail party in Thornton Park and we decide to take two cars to meet up with Leela at the event.

Ian and I make conversation on the way over to the cocktail party– effortless chitchat interlaced with a bit of flirtation. He is 39 and has been feverishly focusing on his career in IT for the past few years, trying to “make it to the top.” He’s just moved here in April from the UK and is very set on establishing himself in Florida.

“It’s perfect. The sun, lakes, boats, nice weather– what more could you want?”

I’ve always loved European culture but what I find interesting is how pro-America he is. In other words, he’s completely over the UK and Europe in general– while I still have very charming memories of London floating about my early twenties and would go back there for vacation in a flash.

The house hosting the cocktail party is gorgeous: a circular staircase forged in iron leads up to the second floor; iced cupcakes and chocolate truffles decorate end tables across the room; lights in the backyard shine through the branches of palm trees overlooking the pool in front of the bar. Mark, Juliette, Ian and I get settled at an outside table and each begin to enjoy a glass of wine.

“Juliette, I was so sorry to hear about your sister,” a voice suddenly says as my heart skips a beat. I turn around. There is a lady standing behind Juliette. I clench up in my seat and dart a glance at Ian. At once, good old reliable Mark jumps into conversation with him as distraction.

The lady is meanwhile still speaking. “My daughter has been reading her blog and called me saying, ‘Mom– you have to read this.’ ”

Thankfully Mark and Ian are now engaged in an animate discussion. I listen in on Juliette’s conversation as I nervously tighten my grip on my glass of wine. Apparently the lady also overcame a brain tumor in her life and she is now spouting her story to my sister. Suddenly I realize why this house is gorgeous and why it’s situated in such a nice neighborhood of Orlando. Half the people attending this cocktail party are doctors who work with Juliette. If they make the right connection, they will quickly realize that I’m Kat– the girl from the blog. Stepping out of the house tonight had originally entailed putting on a masquerade mask and escaping the reality of my situation for a few hours, so I am not exactly thrilled to realize the Fucking Tumor is now enjoying a glass of wine next to me.

When the lady departs from our table, Juliette tells me I should go speak with her.

I snap, speaking in French in a hushed tone: “I don’t have cancer tonight!”

“I’m sorry. I didn’t even think there would be so many people here from work.”

“It’s not your fault.”

“We can leave whenever you want.”

I can feel myself getting upset, so I grab my purse and head to the bathroom. Every person who glances at me is now participating in a new guessing game in my head: Do they know you’re Kat, Juliette’s sister– the one diagnosed with brain cancer?

When I come back outside to the table, Ian asks if I am all right.

I lie. “I just got an upsetting text from a friend going through a tough time.”

I try to smile. Part of me knows I just want to get out of here but coming up with an excuse to Ian about why we are leaving when we just got here is more of a hassle to think about than to actually stay, finish our glasses of wine, and munch on the catered food. I try to relax and take a sip of Sauvignon Blanc. Ian next to me is attractive, charming, smart, and someone whom in the past I would’ve gone for without a single hesitation. Now part of me wonders if I’m allowed to– while another part of me insists there is nothing wrong with showing him who I am, because I will always be me no matter what is going on.

Eventually, once I am calmer, I do go up to the lady and introduce myself as Kat. She is very kind, takes me aside immediately and goes into the details of her battle against brain cancer.

“The doctors told me I wouldn’t be able to communicate in six months and would be gone shortly thereafter. I told them this simply wasn’t an option.”

“Well– it wasn’t an option for you, and it’s never going to be an option for me.”

The lady’s case was much worse than mine. Her tumor was a grade 4 and wasn’t in a location where it could be removed surgically– nor did she respond to radiation and chemo. In fact her treatments made her tumor grow rather than shrink it and the doctors gave her another six months to live. This was five years ago. Today she is healthy, her MRI’s are clean, and she is communicating with no problem as she ended up finding an alternative to traditional treatment in the field of cryogenics. It’s inspiring to hear about others who refuse to accept a diagnosis and fight it off.

Eventually Ian and I take our leave and go have a more intimate conversation back at Luma’s. When he drops me back off at Juliette’s, he tells me, after a very nice good-night kiss (A+), that I’m too good to be true.

It’s far from the truth, but being too good to be true is a nice idea to ponder– minus a few cancer cells and all.

September 2nd 2011

2011-11-01T11:59:00.000-07:00

September 2^nd 2011 (Orlando, FL)

It’s Labor Day week-end. Juliette is working back in Orlando and she’s already declared that she’s not leaving me behind for three days without family. In essence, she’s bought me a plane ticket to fly back to FL with her, relax for a few days, meet some of her friends and try to forget about the scary upcoming week of radiation. The Weinberg Building at Johns Hopkins is closed on Monday for the holiday but is re-opening the following day for patients to continue their treatment plans.

For tonight Juliette has made plans for us to have dinner with her friend Leela. I already know from Juliette’s descriptions and entertaining stories that Leela and I are going to get along just fine. Leela is another kickass fun-loving ER doctor who constantly travels around the world and never seems to be shy of speaking her mind. The three of us put on cocktail dresses, heels and head out to a restaurant called the Ravenous Pig in Winter Park.

We grab a table outside and chat over some appetizers and Sauvignon Blanc. It feels weird to be out again, interacting with people as though nothing ever happened: everything is the same thing for the outside world when my own world has drastically spun around. Rather than blending in with society, I often find myself feeling like an alien– like I almost belong to a different species now.

Leela starts to tell us about a fancy catered cocktail party that she is attending tomorrow– an event taking place in the stylish neighborhood of Thornton Park hosted by some of her friends.

Juliette glances at me. “You up for it?”

Up for attending a cocktail party, laughing a bit, forgetting about all this tumor crap and having a chance to pretend I’m the old Kat?

“Of course.”

We decide to end the evening at Luma’s– a plush wine bar on Park Ave. located five minutes walking from Juliette’s house. Last time Juliette and I stepped into Luma’s was in October of 2010– when I flew down from the west coast to celebrate Halloween in style. We both got dressed up as the French Queen Marie-Antoinette and carried trays of iced cupcakes around, inviting strangers to “Eat Cake.” Mark was dressed up as the executioner who beheads us during the Revolution, while the guy I was dating at the time played the part of King Louis-the-XVI. As we entered Luma’s that Halloween night, some paranoid woman thought we were hitting on her scrawny husband and began insulting us from afar. I remember walking right up to her and her circle of friends and confronting her until she offered us some apologies.

As I stand here now surrounded by more or less the same crowd, it dawns upon me that everything before my diagnosis seems like it all belongs to another life now.

“You all right?” Juliette asks. I nod. “Is it weird to be back here?”

“Yeah.”

“Remember how you stood up for us on Halloween and went up to that whole table by yourself?”

I smile. “Yeah. I remember. Nobody is allowed to insult us.”

I observe the room around me. The décor of Luma’s is very suave– white couches and mirrors kept in the dim glow of a few scattered lights, offering patrons the chance to indulge and relax in an extensive wine list. As Leela goes to the bar to order us drinks, Juliette and I look for seats but without any luck. Finally Juliette spots a few unoccupied chairs near a couple sitting down.

“Are these seats taken?” she asks.

“No. Go ahead.”

The couple, Jeff and Lynne, are both fellow Canadians from Nova Scotia. Since Juliette and I are originally from Montreal, the four of us quickly bond over Canadian patriotism and cheer for our country. Leela soon comes back carrying glasses of white wine. I hear Jeff trying to speak French with Juliette, a conversation interlaced with the background of Luma’s vibrant night murmur. Lynne sits down next to me– a Nicole Kidman knock-out with a gorgeous smile and a beautiful figure. I chat with her about life, education, career goals, just like I would have before the One-Eighty– although I’m pretty sure no one would believe me if I told them I had brain surgery two weeks ago.

Juliette waves in the distance. “There’s Mark!”

Mark looks spiffed up in a sports jacket and dress pants. “Mark,” I smirk. “You look good– what happened?”

“By the way our friend went to the restroom,” Lynne tells me. She eyes me coyly from beneath her glasses. “He’s British. Cute. Single.”

British, cute, single. I perk up. I want to flirt. I’m wearing a sexy corset cocktail dress and look just like I did two months ago with my clip-on hair extensions and thoughtfully-arranged headband. I want to pretend that nothing has changed and prove that I’m still me– brain tumor or not. From across the table, Juliette raises an eyebrow at me– a silent nudge urging me to bring out the good old reliable Scarlet O’Hara charm.

I offer Lynne a smile. “That sounds promising.”

Upon his arrival, I immediately categorize Ian as handsome and charming. Dark hair, European-looking, sexy accent– Lynne inconspicuously gets up and lets him sit down next to me. Ian is starting a new life here in Florida, does IT work with Jeff (actually Jeff is his boss) and comes from Birmingham, England. I like flirting with him; it’s like I’m back to my old self without a care in the world, although when he eventually asks for my number I can only think: If only he knew.

“I’m going out to dinner tomorrow with Jeff and Lynne,” Ian says. “Would you like to join us?”

“You landed in Florida like five minutes ago and you already have a suitor,” Juliette laughs out next to me in French.

I pause before answering Ian. Can you do this? Are you allowed? Well it’s not like I’m going to walk around Winter Park with a big CANCER sign stamped on my forehead. I bat my eyelashes at the British Prince.

“Actually we are attending a cocktail party tomorrow night in Thornton Park if you would like to be my date.”

“I would love to.”

In the past, the purposes behind attending parties have usually been to mingle and flirt– a.k.a. meet cute guys– so there’s a sign right there I’m a bit smitten with this British guy. I actually want to bring him as my date to this cocktail party.

When we get back to Juliette’s an hour later, the mood drastically changes. It hits me as I slip off my heels that I’ve just tried to mimic what my life was like two months ago. I sit down in the kitchen, clenching my fists, overtaken by that now-familiar whirlpool of dreadful emotions: rage, anger, fear, torment, a sense of helplessness I can’t quite describe. Tears are pouring out again.

“I want it OUT of my brain!” I yell at the top of my lungs as the neighbors across the street probably overhear me. Juliette and Leela rush over to my seat. “It needs to get the fuck out of my brain!”

“Kat– you are going to get through this, it doesn’t matter what needs to get done!”

Juliette and Leela are now both swearing they will do whatever it takes to see me through this– even if it means opening their own research labs and implanting rats with grade 3 astrocytoma brain tumors.

I am still upset. “How could this happen to me? There are rapists and child molesters out there! I don’t deserve this!”

“No– of course you don’t.”

“Then why did this happen?” Of course they cannot answer that question. No one can. “All I wanted to do in life was finish my PhD, write my novels, travel the world, and live happily ever after!”

“Kat– you will.”

A few minutes of silence pass. Finally I get up, calmed down and go take a warm shower, knowing I will feel fine again tomorrow. I always do. As I get ready for bed, propping up pillows and ducking beneath a few fluffy blankets, I glance at my cell phone and smile: a polite text from Ian is now sitting at the top of my inbox.

“It was really nice to meet you, Kat. Looking forward to seeing you tomorrow.”

One-Eighty

December 15th 2011– January 1st 2012

November 16th – November 17th 2011

November 11th 2011

October 30th – November 8th 2011

October 29th 2011

October 28th 2011, part II

October 28th 2011

October 27th 2011

October 20th - October 22nd 2011

October 16th – October 18th 2011

October 4th- 5th 2011

September 29th 2011

September 27th – September 28th 2011

September 23rd 2011

September 17th – 18th 2011

September 14th – 15th 2011

September 13th 2011

September 9th 2011

September 8th 2011

September 6th ­– 7th 2011

September 4th 2011

September 3rd 2011

September 2nd 2011

September 6th – 7th 2011