Here We Go Again

Sometimes I feel so selfish. So narcissistic. Here I go again! I am asking you all today to keep me in your thoughts.

Its that time again. Somehow, 3 months has gone by. They have gone by quickly in a blur of tests and schedules, pain and determination. I am only just now getting a handle on things, and yet today I am again forced to buckle in and I can feel the roller coaster chugging toward that huge, imposing ascent. I am screaming, "No not yet. I'm not ready yet!" I have just in the past two weeks gotten a handle on my life now with the latest diagnosis. I have just these past two weeks felt well enough to get back out there into this thing called life. I have just now been brave enough to make plans. I have felt strong enough emotionally to begin calling my wider circle of friends and act normally. I have only now begun to delude myself, "Maybe I'm not sick. Maybe I'm being too dramatic. I bet I'm going to live a really long time and all of this will seem like some immature mountain that I made out of a molehill when I was 26."

But now it's scan time. There is no getting around it. This afternoon, I go to see my doctor to get the results. The guillotine is sharp and glistening in the sun. A crowd has gathered. I just have to climb the steps and learn my fate. Are the drugs working? Has anything grown? Can I stay on the trial?

And then, I let my imagination wander even further, maybe the drugs have worked so well all of those teeny tiny scary cancer spots that we have been watching nervously for years, they are scattered all throughout my body, maybe we have found the silver bullet drug that I hoped for. Maybe they have all disappeared??

Or I could be stuck today somewhere in the middle. In no man's land, which is also so very hard to overcome. No change. The cancer has not grown, so let's assume the drugs are working, but we have no evidence. There is some tempered celebration, but the dreaded spots are still there.

I have been anxiously awaiting a phone call all week. I have been riding this roller coaster long enough now to know the drill. If the results were very bad, like life threatening bad, the doctor always calls. She always calls on her cell phone in the evening when she gets home. Not because she didn't find time during the day to deliver the bad news but because that way she has all the time in the world to answer any of my questions. I love her!

My witching hour is sometime between the hours of 6pm and 8pm. I have had twenty scans in the past five years. Of those twenty, six have come back badly. I have still had more good news or in between news than I have had bad news. I like to think that is a sign of me winning. Yet, six bad phone calls is enough for you to notice a pattern.

She calls my cell between 6pm and 8pm from a blocked phone number. So all week I have been on lock down. If Mamma calls or one of my girls calls, I angrily hit ignore (sorry gals!) I am as single minded and focused on my cell phone as a young teenage girl waiting for that return call from her date, except without any butterflies of excitement.

On Monday, the poor Salvation Army man made the mistake of calling my cell phone at 6:15pm to remind me of the pick up of some donations on Tuesday. I almost took his head off. Poor man! None of this is his fault! Then Comcast made the mistake of calling to let me know they changed their name to Xfinity. My service is excellent and the cost is reasonable, but that errant phone call alone was enough to make me want to change my provider!

So far so good, no midnight phone calls and we are trying to deal here at the Big Man and Big Pant household.

How do we deal? Basically, we make plans and spend money on the future. The sensible thing to do this upcoming holiday weekend would be to stay close to home. We live in Boston for goodness sake, there are some fabulous Fourth of July festivities right here in our back yard! But no! Not the Big Family! Instead, we satiate our anxiety by plunking down some cash (that we don't have!).

This weekend, we are going to take a road trip to New Hampshire. To the Mount Washington Resort to be exact. A non-refundable hotel package. We decided this over the weekend as I was having a meltdown in the kitchen. The Big Man said it first, "We need to get out of here."

He's right. I don't care what happens this week, or where I have to be, or what huge, life altering decisions I have to make. We're getting the heck out of dodge. We are going to hike to high peaks and stare out into the sunset and ponder life's great mysteries. We are going to work up a sweat on the tennis court. Then, we are going to get a couple's massage. And, of course, there will be fireworks.

So I must take a deep breath this morning and know that everything will be fine. No matter the results today, life goes on. Life is beautiful and I have a beautiful partner, and no huge news will change that. Our holiday weekend may be a celebration of my cancer butt-kicking skills. We could be giddy with excitement and all of the potential for our wide open future. Or this trip may be just the vacation we need to steel ourselves for that next chapter in this journey.

Whatever this turns out to be, for right now, I'm nervous as hell and would appreciate all of you lifting me up in your thoughts. Thank you for reading and thank you for caring. This moment really is what my blog is all about. A place where I can remind everyone all at the same time, while you're headed to work today, I'm headed to my own personal guillotine. Wish me luck!

I Am Radioactive Man!

I stumbled upon an interesting article this week. According to some recent studies, Americans get the most medical radiation exposure in the world: The Radiation Risk. While America is often considered a leader in the field of medicine, our reliance on high powered tests to diagnose serious medical conditions has some side effects. Specifically, too much radiation exposure increases your risk of developing cancer. Well, then what am I, Cancer Girl, worried about you may ask? Good question. You may recall in previous posts I lamented about how alone I feel in the hospital. When the nurse approaches you wearing a floor-to-ceiling sterile gown, sterile blue booties, and giant yellow plastic gloves that cover her arms up to her elbow, all to protect her from being exposed to the medicine that is about to go into your arm.... I'm just sayin', it could send the wrong impression! When I go in for a scan, the technicians don't just put on protective clothing or move behind a protective window, instead the entire room clears and they actually leave the room and go down the hall. So, yes, I might feel a little isolated! These moments of feeling like a guinea pig or lab rat were one thing in the beginning. In the beginning I was so focused on kicking cancer's butt that I didn't stop to worry about what exactly was going into my body. Just two weeks after my first chemo treatment, I could feel chunks missing from the giant hard mass in my left breast, so instead of worrying about any long term side effects, I said, "Bring me more!" But now, after five years of being poked and prodded with no end in site, I'm starting to feel a little sorry for myself and I'm starting to wonder what my end goal really is. Let's say I live until I'm 80, I know what otherwise healthy 80 year olds look like. What in the world will I look like? What other ailments might I have? What am I doing to myself? I've made myself feel better by reminding myself that many of my peers are out on all-night benders in New York City and I'm not. Ozzy Osbourne turned out relatively OK. I don't really have too much to worry about, but then this article came across my Google Alerts. Suddenly, that nagging suspicion that perhaps I was indeed a walking freak were suddenly confirmed. Said article discusses the issue mostly from the perspective of the average American, the average healthy American, reminding me that I am, in fact, not an average healthy American.  It argues that we should fight for doctors to rely less on tests like CT scans because too much radiation carries risk. Frankly, in reading the article and looking at the numbers they provide, you should all breath a sigh of relief. One CT scan to diagnose whatever brought you to the ER at 3am will not kill you. Instead, I am taking one for the team! The article compares our exposure to radiation from medical tests to the radiation exposure of survivors of the Chernobyl Nuclear Disaster and studies of the Japanese atomic bomb survivors. Those survivors had between "50 and 150 millisieverts of radiation. A chest or abdominal CT scan involves 10 to 20 millisieverts." Let's put those numbers into real life Big Girl measurements. For five years, I have gotten chest AND abdominal CT scans every three months. Those scans are unpleasant enough because I have to sit in the hospital drinking nasty pink fruit punch mixed with metallic tasting drugs for two hours (thank you, thoughtful readers who sent me flasks and Flamingo Shaped Beer Bongs to help make those sessions more bearable) but now we also have to do some Big Girl math.  4 CT Scans a year X 20 millisieverts a scan = 80 millisieverts a year X 5 years = 400 millisieverts of radiation Well goodness gracious, its like I lived through Chernobyl and both Japanese A-Bombs!!! This math also reminds me of another funny little test I get called a MUGA scan of my heart, which happens, coincidentally enough, in the hospital department called "Nuclear Medicine." After every MUGA scan, which I get every 6 months to make sure my heart is functioning properly, I am given a tiny little card that the technicians tell me I am to carry with me for approximately 48 hours. Basically, this little card tells officials that I am radioactive. Apparently, some poor patient left his MUGA scan and drove back to his home in New Hampshire, but on the way home he got pulled over by a state trooper who had some special bomb sniffing equipment in his car.  At this time, the little notification cards were not invented yet and the poor soul was dragged through quite a few hours of explanation.

So, thank you, Google Alerts for confirming that I am in fact, Radioactive Man! I'm even more of a survivor than I thought. But on a more serious note, as our country advances with medicine, more and more patients are surviving many years with serious illnesses like cancer and other ailments that 20 years ago would have been a death sentence. How do we, as a country, support these survivors? How do we even know what to do, or what we will need to do in the long term, to support one another?

The Big Man

I am feeling really wonderful today. I had an infusion of TDM1 on Wednesday and, although the day was long, I sailed through. My tummy was a little upset and I slept all afternoon, but on Thursday I woke up and felt ready to take on the world.

Let's keep our fingers crossed that this continues. I am confident that I can fight this cancer and not compromise my day to day life. Balancing treatment and quality of life is a fine line to walk. It sometimes feels like I am walking one of those really, really high tightropes. All I know is, today I am walking that tightrope proudly, and I'm walking it in some hot pink high heels!

Because I am doing so well, I am going to take advantage of this opportunity to shine the spotlight on another. It's time to highlight The Big Man!

The Big Man makes me happy. I hope that everyone is blessed with a love like ours at some point in their lives. I met him fall of my senior year in college. CC, my best friend at BU, brought me as her wingman to a party. She was there to meet a boy and, somehow, I was the one who ended up meeting a boy.

The Big Man obtained that nickname on this blog because he is my 6 foot 4 red head with freckles and the body of the David. He who smells like lemons, and sunscreen, and all things that are good in the world. When he throws his arms around me, he makes me feel safe and I fit just right.

That first evening, the Big Man held the door open for another girl as our group started leaving the bar. He held the door open for another girl and there, in that moment, I felt the wind get knocked out of me. I wrapped my sweater around my shoulders a bit tighter and thought, “He is such an idiot. We would be so good together, and he doesn’t have any idea what he’s missing.” That was when I fell in love, but I kept falling every day after that. Everyday since I met him six years ago I've been falling ever deeper. Even tonight, as he screams at the Celtics on tv, I have to giggle and a part of me falls even further in love.

After  my double mastectomy, the husband helped immensely. He slept on the  floor of my hospital room. He held my hand. He brought me special soft  blankets from home. He helped me with my IV pole and awkward open  hospital gown as I shuffled down the hospital hall trying to offset any  risk for blood clots by getting active. He really was my knight in  shining armor. I do fall particularly in love with the Big Man at the hospital, but not because he is my knight in shining armor and not because he nurses me back to health, but because he is always so totally and completely himself.

When people get nervous, everyone does a little something different. When I get nervous, I drop things. When my mom gets nervous, she talks super loud and super fast. When my oldest brother gets nervous, he gets bossy. When the Big Man gets nervous, he helps. He likes to volunteer to help out in any way possible in the hopes of working off his nervous energy.

When the Big Man met my parents for the first time, he was constantly hopping up. Offering to carry drinks, opening doors, and cleaning. He would get up before anyone else and, while my entire family had breakfast in their PJs, Big Man was dressed to the nines in khakis and a button down and would sweep my parent's back patio...in the rain.

You get the picture.

Anyone who has spent any time in the hospital knows that it is a big game of hurry up and wait. After checking in at the front desk, you are ushered into a waiting room. Twenty minutes later, your name is called and you are escorted to....another waiting room. Five waiting rooms later, you are awkwardly sitting in a paper gown on an uncomfortable exam table...waiting.

Chemo is no different; lots of activity for very little forward progress. The tactic the chemo peeps like most for making you feel like you are moving forward when really all you are doing is waiting is providing you with bogus updates. The Chemo Pharmacy takes HOURS. My infusion only lasts half an hour. The active dripping of drugs into my veins takes 30 minutes. And yet...I wait for the pharmacy to mix up my drugs for two hours. Two whole hours.

So the greatest trick that the chemo nurses use is providing you with "pharmacy updates". A couple weeks ago, the Big Man graciously accompanied me to a whole full 10 hour treatment day. After hour 3, the nurse comes to apologize for the wait. "The pharmacy is just mixing up your drugs now. Really, they should be ready any moment. I'm sorry to keep you waiting, but hang in there!"

I smile and open a new magazine knowing that this explanation is code for, "You've got at least another hour, babe." The Big Man looks confused and then quickly stands up straight, nervously wiping down his khakis.  "Do you need my help at all?" He asks the nurse,  "Can I do anything to help you?"

Ahh the smile that came across my face. This is why I married the Big Man. No, honey, you can not go back into the lab, throw on a white coat, and start stirring a big bowl of chemotherapy together like it's potato salad. But I love that you offered!

Thank you, Big Man, for being you and thank you for loving me.

Milestones

TGIF! Today is a huge day for me. Well, actually, yesterday was a huge day for me, but the Big Man and I plan on celebrating tonight. He is taking me to see "The Great American Trailer Park Musical." I don't know what to expect, but whatever it is it sounds fabulous!

No, it is not my birthday. No, it is not my wedding anniversary. No, we did not get that puppy I want, although Big Man, if you're reading this, if you come home with a puppy tonight then you will automatically win every argument for the next five years!

Today is my "Cancer-versary". It has officially been five years since my breast cancer diagnosis! I am entering my sixth year of survivorship today! I am now officially on the winning side of that 20% statistic that I think about every second of every day. My goodness, gracious how far I have come in the past five years! I get a little bit shaky just thinking about where I was on June 3, 2005.

I was standing in line at Starbucks. I had graduated two weeks before.  I was bright eyed and bushy tailed. The greatest worry that I had was what to wear to my first day of work. I had just spent some time shopping on Newbury Street for cute shirts to go under my boring black suit jacket. I needed a coffee because I had been sadly unsuccessful.

Everything I tried on suddenly seemed so "juvenile". I suddenly felt the urge to shop at Anne Taylor or Talbots. I bought my first ever pair of shoes from Naturalizer. In college, I had never left hip, cafe-and boutique-filled Newbury Street, but post-college, I had the urge to drive out to visit a large suburban mall.

I hoped that ordering a skinny, double-shot caramel macchiato might wake me up from this real world induced fashion coma.

That is a long winded way of saying, I was a totally typical college student. I did not have a care in the world, but if you asked me I am sure I would say that I was suffering some sort of major crisis.

My phone rang. It was my mother.

Momma asked me where I was. I told her Starbucks. Without taking a breath, I started into my big thoughts on the joys of sensible Naturalizer pumps. She clearly wasn't listening. Whatever she had on her mind she was going to say and there was no stopping her.  She interrupted my Naturalizer monologue. She never told me, "Honey, you should probably sit down" or "Why don't you call me back when you get home", or even, "Go into the bathroom where it is quiet and you can talk privately."

No, no. Instead, while standing in line at Starbucks behind a young mother with a MacLaren stroller and several Burberry and Petit Bateau shopping bags, my mother told me I had breast cancer.

I hung up on her saying, "Listen, I just can't deal with this right now."

Now, five years later, I can deal with absolutely anything and everything.

This time five years ago, I was in my brand new Volkswagen Jetta, a graduation gift from my proud parents, driving eight hours home from Boston to Baltimore with my mom. I had, for some reason, packed only three outfits and a bathing suit. Who knows why I thought I needed a bathing suit for chemo. I had quit my first job before I had even started and instead of living with my best girlfriends, I was in the process of moving back in with my parents.

On the long, Batan Death March that was my ride to chemo, I was having a conversation with my oldest brother about why I should or should not tell my college friends about my diagnosis.

"Bridge, this whole cancer thing is going to be really quick. Just get this chapter behind you, and you'll want to go back to normal. If you tell everyone, you'll never be able to go back to normal. Bump in the road, Bridge, bump in the road."

"Dude, Bro, I'm going to lose my hair. How am I going to explain that one?"

Silence.

And just like that, my life was forever changed. Now, I tell my story to anyone who will listen.

Five years ago, my boyfriend of six months came to my parent's home for only the second time. He held my hand as my mother's hairdresser shaved my head.  Here I am sporting my new look next to my dubious younger brother.

Five years ago, the GI Jane look worked for a bit, but then my hair started actually falling out. It came out in big chunks. The Big Man actually left a hand print on the back of my head after watching a movie at one point. The Big Man was both mortified and feeling incredibly guilty. So I quickly invested in an amazing wig.

Looks like I got the soccer mom look I had been hoping for on Newbury Street!

Now, five years later, that brave young man who held my hand as I shaved my head is now my husband and my hair is long and fabulous.

The past five years have been a long and painful few years. Nothing has gone as I expected, but the greatest lessons of my young but eventful life haven't been learned in the college classroom; they were learned in the hospital room. So here is what I have learned up to this point. These thoughts are the legacy from my first five years:

Your parents are your best friends. Contrary to what many of you might imagine, they will not be here forever and their presence in your lives is a gift. Let go of any petty drama or family arguments. If caring for your ailing mother is grating on your last nerve, when you have the knee jerk reaction to speak sharply or get exasperated, instead take a deep breath and give a hug instead. Your parents are the only people on this earth who know you better than you know yourselves.

The best thing that ever happened me was moving in with my parents after graduation. I did not just live upstairs. I cooked dinner with them every night, my dad and I went on dates, I got to know my mom as a friend and not a mother. I learned about their first jobs and their graduate school experiences. I learned to turn to them for good and sound advice, and to actually listen to their advice rather than thinking I know it all. We became the best friends we always should have been for the first 21 years of my life because we found ourselves in the unhappy position where we were all clinging to each other like survivors to a life raft. Please, do me a favor and become best friends with your parents simply because you are lucky enough to realize how precious they are!

I’ve also learned to stop spending my time trying to plan my whole life and setting certain goals to attain. Do not measure yourself based on the accomplishments of your peers. Life is too short to wish it away.  Reflect on all that you have accomplished as opposed to planning for the next accomplishment. Focus on tonight rather than planning for tomorrow. Turn off your phone, computer, tv.....Instead, let go and enjoy where you are in this very special moment. I know I will really enjoy "The Great American Trailer Park Musical" this evening. What are you doing tonight? Whatever it is, put your heart and soul into it!

 When I visited a doctor and he ran his hands through his hair and said, “I just don’t know what to do with you.” At that moment, I was forced to take stock of my life.

I task all of you to spend some time today, in my honor, taking stock of your lives. Don’t take stock of your career goals or material possessions. Take a look at your character and at your relationships.  Take a look at the friends around you, because at the end of your lives, your relationships are what endure even after you are gone. Your relationships and your character are what matter and they are all that matter.

I have spent the past five years intensely focused on the relationships with the people I love. It has been the best five years of my life. I am looking forward to the next five.