Thursday, May 21, 2015

tHERsDay: The Guardian




I triple check the forms, finding and correcting errors, re-reading the long and complicated directions for the umpteenth time. When I am finally (relatively) certain I have done everything correctly with the pile of paperwork in front of me, I secure the stack together with a paper clip and write a $200.00 check to the County's Surrogate Court. I have spent a total of four days on the paperwork alone - two hours just this morning in review. The entire process of just completing "Step One" has been two years in the making, 99% of that time due to procrastination.

As suggested, I am hand delivering the paperwork instead of sending the packet certified mail. I make the 20 minute drive, a straight shot down a busy four-laned pike filled with lights and lined with endless strip malls. I am a little edgy, almost nervous, and slightly sad... all of which are very silly emotions to have over filing paperwork. Perhaps it's because anything to do with  the legal system makes me nervous. Even when I see a cop car, or walk through the security detectors positioned at the doors of retail stores, I get a case of the cold sweats. Maybe I always feel like someone is gonna see right through me and know I'm not as good as I seem. Or maybe, I'm just weird.



I park around back and try two different entrances before finding the right building. I get my purse searched and walk through the metal detector (cold sweat!) then head for the Office of the Surrogate Court. This is the place where you go for a great many things, one of which is to petition for Legal Guardianship of your adult daughter who cannot make decisions as a fully emancipated adult. I am here, weeks before her 20th birthday, to start the process of taking away all of her legal rights to make any decisions. I will forever be her decision maker. Plenary Guardianship, they call it.  The fact is, if I don't do this, she is screwed... because she can't make any decisions for herself. So I'm doing what I should have done almost two years ago. I haven't done it yet because it's a long, complicated, daunting, somewhat expensive process.

I haven't done it until now because above all, it just makes me sad. Not that surface sad, like "Oh yeah, that's sad."  It's like a deep, deep, profound sad. The sad that sits in a pit of unresolved grief. The sad that has no bottom. The sad you never acknowledge you have until you're standing in the waiting room of the Surrogate Court with your stack of papers and your sweaty palms and your $200.00 check and your goofy fake smile and your string of dumb questions that are just filling up the space between you and the nice administrative staff who assures you that they will call if they have any questions.

Step One is completed. The papers are filed. Soon, I will receieve a certified letter with a hearing date and yadda yadda. I try to feel a sense of accomplishment for this huge milestone, but all I feel is a little empty.

I drive back home and half way there I figure I'm probably going to start to cry - and almost do - but then stop myself and just decide to turn up the radio and sing some stupid pop song out of tune instead.


Tuesday, May 19, 2015

Weekend Wrap-Up: Prom, Baby!


Another year, another Prom!! This was our fifth year going to Prom and it was just as beautiful and fun as all the rest. 



We braved a strapless dress... you long time readers may remember the streaking incident of Prom 2010. (Click to read that one AND see how pretty and happy she looked!!)
This time, we were all on guard for wardrobe malfunctions.  



A girl is never fully dressed without some pom poms.





The ladies at her school did her hair. Thank Goodness, because I am entirely inept in the whole hair and make up girly thing. Her updo survived a long hot bus ride home, a bath and a nap. I had to shove a few extra bobby pins in, but I think she looked quite lovely!! 



I also let her borrow my grandmother's necklace. It was one of the few items of jewelry I inherited several years ago when she passed. It was nice to have a little reminder of my beloved grandma on prom night.

Quick Mommy n' Daughter Selfie before heading in!








We met her Dad and her grandparents there and she was so excited to see them. 


CB's grandmother, grandfather and mother (as in ME!!) have all battled cancer within the past few years. This kid was sitting at a table of fighters, which makes total sense 'coz she is a tough cookie too!


It was a fantastic night that wouldn't be possible without the compassionate, dedicated volunteers at CB's school who always put together a fantastic party fit for the princesses and princes at the school. 

The best part of the night is seeing so many of the kids cuttin' up the dance floor. I swear, my smile hurts my face every year. CB typically sits in her seat the whole night, but she did bum rush the stage at one point. Seems she found the raffle baskets that were lined up in front of the DJ and attacked one. 
Ironically, we ended up winning this very basket which made me feel quite relieved given that she had mauled it. Maybe, on some level, she knew it was going to be ours!

The great thing about Prom is that there are no apologies needed for your child's behavior. It's the one night a year where everyone who is in the same boat shares that boat with you. Everyone gets it. And, I don't mean just "get it" as in understanding all the behaviors. I mean they get it as in the bigger picture. 

Nights like this remind us what it's all about. 

Despite the challenges of raising a daughter who needs life long care, the rewards are immeasurable. 
And nights like these, unforgettable. 

Tuesday, May 12, 2015

Weekend Wrap-Up: Mother's Day




This week was one big, fat, celebration. After Monday's festivities, the week continued to be full of love, well-wishes, toasts and hugs and lots of fun. There were lunch dates with friends, mani/pedis with more friends, and bus stop mimosas the first morning that I officially had no where to go. There was a day at the winery with my writer's group and there was dinner in Philly with my Mom and there were random flower deliveries, wine deliveries, cards and goodies left on my doorstep... and surprise visits from old friends. One friend whom I haven't seen in years surprised me at a group lunch, driving from about 40 minutes away. I was so touched and happy to see her! On Friday, a friend who co-founded the Writer's Group with me but recently moved, drove about 2 hours to surprise me during our Writer's Group celebration at a local winery. When I saw her walking across the vineyards with her big smile and flower in hand, I just about freaked! 

My friend Julie, a writer, blogger and all around great friend. Check out her blog 365 Excuses and you'll find yourself laughing and totally relating!






It was an awesome week that ended with the nicest celebration of all -  Mother's Day. Could it get more perfect than that?

Because THIS is what it's all about. Everything I do is for these girls, period.



It was the customary shenanigans over here on Mother's Day. Honestly, it was probably the nicest and most relaxing Mother's Day I've had in a long while. The girls made me pancakes - and actually MADE them all by themselves this year (with Dr. Fab manning the hot griddle). I would have been able to sleep in had CB not woken me up at 6:30 am. But, that was actually okay because I'd rather have her here waking me up on Mother's Day than have her be in Maryland and one of my little girls gone from the nest.

I cried reading each one of the homemade cards the girls made in school. Each one had some kind of cheesy poem about how they'll be grown up one day and the little handprints will be gone, and yadda yadda... insert me crying here... and here and here. It was pretty comical how much of a sap I was. 

In the early afternoon, I indulged in an 80 minute massage which was a huge treat. The day ended with dinner and drinks with some family. I did have to handle one dirty diaper, but other than that, it was a pretty awesome day.



My sister had sent me a dozen pink roses for Mother's Day which I added to the dozen white roses given to me by my in-laws to congratulate me on the end of treatment. I added them to the three bouquets of flowers I received this past week from various sweet friends. I have never been the recipient of so many flowers in my life as I have been these past few months. At any point in time since January there have been fresh flowers in my home, given to me by a friend or family member to just let me know they were thinking of me. Not a day goes by where I don't appreciate this in the deepest part of my heart. It's an amazing thing to feel so supported by a community of women. The sisterhood of motherhood. We all get it. 



Mother's Day ended the Week O' Celebration. Now, we're back to the daily grind of living. I'm totally ready to stop being spoiled and just go back to normal life... a little bit wiser, a little bit stronger, a lot more appreciative of how lucky I am... in so, so many ways.


Tuesday, May 5, 2015

May The Fourth Be With You



Yesterday, May the Fourth, Dr. Fabulous and I began our morning at our favorite local coffee shop. We walked in and everything was randomly Star Wars themed, from the temporarily changed drink names (R2 Tea2 and The Dark Side of the Moon) to the Star Wars movie soundtrack playing in the background. When we asked our barista, she explained it was Star Wars Day. "May the fourth!" she said merrily.  "You know, May the Fourth be with you."

OOOOKaaaay!! I found this exceptionally funny and also the perfect date to celebrate the end of my radiation treatments. May the Fourth be with me, indeed.

The morning ran smoother than ever. Dr. Fabulous had taken off of work for this momentous occasion and drove me in to the Cancer Center for my final day of radiation. No traffic, no hassles. Hot coffee in hand. The ladies were right there waiting for me, already congratulating me on my Graduation Day. I left my husband in the main waiting area and headed back through the maze of hallways into the private dressing rooms and smaller waiting area. I used to get so lost back there, but now I walk confidently down the halls, knowing every turn and every piece of art work on the walls. I didn't need to wait more than a minute which made me sad because I couldn't spend much time with my newest waiting room buddy, Clarissa. She is a 65 year old mother of 6 children undergoing treatment for esophogeal cancer. Since she has a big hole at the base of her throat, she can't speak. So, I talk and she writes notes and does a little pantomiming and we hold our conversations that way. She is one of several women I've met in the radiation waiting room whom I will never forget.




The "girls" in radiation were about as giddy as I. You have to understand that you see these people every single week day for a month and a half. You get to know them and they get to know you. And they are sweet people. Kind, caring, friendly and fun. I won't miss anything else about these last six weeks, but I will honestly kinda miss them.

But not enough to want to ever go back. Just makin' that clear, here.

I go back for my last time into the stark, cold radiation room. Yes, it's cold as in for real cold. It's so the machinery doesn't overheat. I know the schtick. Take off my robe, lay topless (initially mortifying, but now quite natural) with my right arm above my head and jacked up at some weird angle, head turned to the right, staring at that same spot on the wall. The ladies line me up, using the dark blue dots tattooed along my rib cage, torso and chest and the laser beams that shoot out of the walls and ceiling. The table rotates, they scootch me around, they talk about the "flash" and ask for a "half cm roll"and then the machine is moving into place. They say for the very last time: "Here we go," leave the room and dim the lights.

Every day it's been "Here we go," as they file out of the room and leave me alone with a giant futuristic monstrosity of a machine. The lights dim and usually that's when I close my eyes, right before the machine hums. I remember feeling so alone that first day. I thought I might cry. Today, I left my eyes open. I stared at the ceiling tiles, the red lights from the lasers beams, the spot on the wall, the discs in the ceiling. I heard the machine hum for a few seconds then stop. My last five treatments have been super short because they are only "boosts" to the surgical bed. 

The ladies came back in, lowered the table, turned on the lights.

That was it. I was done. Session number 30 was over. 



After I met one final time with my Radiation Oncologist, Dr. Fab took a video of me ringing the bell, which is the big thing you do when you are all finished treatment. I posted that sh*t on Facebook before we even left the building. Hellz yeah, it was time to shout it to the world... and yes, I'm just that annoying.

We went on to celebrate with Mexican food, Sangria and then a trip to a winery before heading home to hug my girls, eat pizza and celebrate more with family who came over bearing flowers and cake.

I'm closing this chapter with pomp and circumstance, but there is a quieter space in me that knows this chapter is not truly closed. It will be part a greater narrative; my bigger story.


I have said, both to myself and others, that I am putting this all behind me and returning to "normal life." But, yesterday what I realized is that you don't put things like this behind you. You carry them with you. Certainly, you don't return to who you were. Sure, on the surface I will be much the same. Life will resume its regular pace, cancer will become a faded memory, and after a while we all will forget that I ever even had breast cancer. With the exception of a boob that looks like it went through a shark attack followed by World War III, I will physically return to homeostasis. Even my crazy boob will heal over time, leaving only faded scars and a few dark blue permanent "freckles" on my skin (which I hate, by the way).

It's behind me, but it's also within me. I take it all with me. I take the courage I mustered, the moments I broke, the fortitude, the strength and the fragility. I take the kindness given to me by so many and the disappointment of a few who showed surprising apathy. The truth is that a cancer diagnosis brings out the best in others. People show you what you mean to them. Unfortunately, the flip side is also true. Cancer reveals who will be there for you and sometimes it isn't the people you might expect. That too, shows you what you mean to them. It's an unfortunate side effect of getting cancer, but you just gotta accept their responses (or lack thereof) as data, without judgement, and readjust your sails.

I take the new friendships I have gained through this experience. People I've never known who have inspired me, cared for me like I was family, and showed me what being a true friend looks like. I take the things I have seen at the Cancer Center and the stories I have been told. Sad stories. Endings quite different from my own. Endings that, I'm acutely aware, could be mine with a simple freak roll of the dice. No one is exempt and though my odds are extremely favorable, I'm no longer naive enough to believe I am above anything. I am a fortunate one, but there is no guarantee that I will forever be. That doesn't bum me out or make me anxious, actually. It empowers me. It makes me feel alive and whole and appreciative. Knowing your life is ultimately out of your control can ironically make you happier. Or, at least that's how it works with me.



Today, a blogger friend shared a NY Times article on her Facebook page titled What Suffering Does. I found it very compelling, particularly at this point in my life. He talked about how we are constantly trying to create a state of happiness, yet the difficult times in our lives are what truly shape us. I think my favorite line had to do with what happens after facing adversity. He wrote:

"People don't come out healed; they come out different."





Everything is the same, but everything is different. I'm back to me, but I'm not the same me. All the things behind me, in front of me, around me, and within me — all of these twists in the road have made me who I am, for better or for worse. Hopefully, for better.




Whatever... I'm done. Thank you all for your awesomeness. A girl couldn't feel more loved.

May the Fourth be with me.

May the Fourth be with us all.


Thursday, April 30, 2015

Patients and Patience







Last week, CB decided to wake up at 5:00 am  bright-eyed and bushy tailed for the day. I suppose it wasn't so bad, given that I had been awake since 4:00 am, lying in bed with my eyes closed praying that sleep would eventually overtake me. This was the third day in a row that CB woke before the sun was up. But on that particular day, I took solace in the fact that 5:00 am is better than 1:00 am because you can actually just get up up and tend to things, like packing lunches and unloading the dishwasher. I seemed on top of everything by the time the three little ones were awake, happy for the head start to the day even though I was already exhausted and it wasn't even 8:00 am.



After Dr. Fabulous took Pink out to the bus at 7:20, it was just me and the three remaining girls speeding through regular morning routine - hair brushing, bag packing, breakfast making, shoe finding, someone whining, something forgotten... then, I smelled it. CB, dressed and ready for school about 20 minutes before her bus would arrive, had a diaper blow out. Code Brown as we call it around here.  The kind of accident that required an immediate bath because no amount of baby wipes would suffice.

Basically, in this house the motto "Sh*t Happens" is not figurative.

By the grace of God, I somehow got her bathed, re-dressed and everyone made it to their respective busses on time. If there was an Olympic medal for this sh*t, I'd be on a freakin' Wheaties box. I ended the morning mayhem with a last minute, unexpected dash over to Pink's school to deliver the binder that she left on the kitchen table. By 9:30, I was on my way to radiation forgoing both the shower and the coffee I had planned in the world of "well laid plans" I fool myself into believing I live in.


I wish I could say that little scenario last week was an unusual morning, but morning mayhem is all par for the course 'round here. Just this week alone there was a repeat performance of "Dirty Diaper" one morning and a grand mal seizure at 4:00 am another morning, complete with accompanying bloody nose after said seizure knocked her out of bed and face first onto the floor.

Perhaps it has been feeling more hectic when a daily trip to the Cancer Center is added to the mix. Every morning, Monday through  Friday, off to radiation I go. No matter what is happening, no matter how I feel, no matter what the plan or plan-shaker-upper — no excuses. At 9:30 am I leave the house, come rain or shine, hell or high water. My grandfather's Memorial Service? Pink's Science Fair? Sick kids at home? Sick kids needing to be picked up at school? An injured husband needing a ride to the Med Emerge? A field trip or a concert? Cancer doesn't care and its treatment doesn't relent. Cancer is rude like that and its treatment behaves with an equal amount of intolerance. Oddly, everything in your life both screeches to a halt while simultaneously carrying on. But, like all the other stuff life throws at us, we somehow figure it all out.



Before I started my 30 day, six week course of radiation, I was very optimistic and nonchalant about it all. I felt so happy that I had dodged the chemo bullet, that radiation felt like a walk in the park. Who the hell was I to complain?

"I'll be fine," I told everyone. "I'll get a bit tired, that's all." That was all true. I would be fine. I would be tired. Sure, I knew the hassle of losing every morning to the drive back and forth as the same deadlines and work and domestic chores clammored to get done. I knew I'd get sore and swollen and eventually uncomfortably burned. But, as Week 1 of radiation started, I quickly realized I was ill-prepared for this leg of the journey. Mostly, I wasn't prepared to feel like a cancer patient for the very first time since my diagnosis. 



Every day I swallowed a pill to prevent more cancer, I drove to the Cancer Center, I sat with other cancer patients, and received radiation to treat MY cancer. I couldn't escape it. I was a cancer patient. But, I was the lucky kind so I felt blessed. Blessed and sad and guilty and overwhelmed and tired and sometimes alone. I felt humbled and conflicted and emotionally upended. Every single morning this dumb diagnosis of mine was "in my face;" the side effects lingering the rest of the day as a reminder. The real problem was this — I had expected a sprint but I was running a marathon. Marathons require a different type of pace. Marathons are all mental, and I was cracking.

Week 1 was supposed to be a cake walk, but it was tough. My grandfather died during my first week of radiation. I also started taking Tomoxifen, the drug I will be on for at least 5 years to prevent the growth of any new tumors. So, between the adjustment to treatment, the estrogen-blocking effects of Tomoxifen (basically, it throws you into a state of pseudo-menopause), and the sadness of losing my grandad, I was a hot freakin' mess.

Weeks 2 and 3 weren't much better. I was, honestly, sitting inside a case of the moody blues. By the time we hit the fourth week, Dr. Fabulous injured his neck something fierce and was incapacitated while Pink was assaulted with the stomach flu which always seems to hit at 2:00 in the morning. Nothing like scrubbing the vomit stains out of a floor at 2:00 am, I tell you. And why can't a 10 year old barf in the toilet? I'll never know. Weekday evenings are filled every single night with all the kids' activities which are in full force right now and weekends are hijacked by soccer games, races, swimming, birthday parties, and other family, social and work obligations. No rest for the weary, and all that jazz ... which makes the weary quite crabby and nasty.



I'm all good now, in case you're wondering. Adjusted to the Tomoxifen and got my mojo back... and by mojo I mean my positive attitude. After returning to myself, the diapers and seizures and puking and radiation and over-scheduled craziness all felt like "normal" again. You know; funny, manageable, and just so "us."


Part of me is kicking myself because there were so many things I could have written about along the way, in real time, instead of glossing over everything in one colossal recap. Talk about awesome fodder for a blog! Every day there was something learned — a gift, an interaction, a lesson, an inspiration, an act of kindness extended to me. There were tough days, there were easy days. There were days I drove in the rain with a mood to match the grey clouds, days I jammed out to Uptown Funk feeling quite grateful and days I enjoyed the company and laughter of sweet friends. There was an outpouring of support unlike anything I could have ever imagined, and there were moments I felt so incredibly alone and fragile. There were people I met who inspired me while my heart secretly broke for them. Weeks and weeks of this, all unblogged.


I suppose I was tired, mentally and physically. Employing my useless brain and staying up past bedtime to write a blog post held no appeal. I suppose too that so much of this journey just had to be plowed through. I didn't want to really stop and analyze things too much. I didn't want to dissect my feelings or dwell in some deep introspection. I just wanted to put my head down and plow straight through the center of the storm it until I saw the light at the end. That light is so bright right now. Two days left of treatment. TWO!! I'm in my "boost" sessions now, a concentrated dose of radiation focused specifically on the surgical bed. It's shorter, it's affecting less tissue, it means I'm just about done.

I'm ready to cross the finish line of this marathon. I came out of the gate too fast and furious, I lost my way, I started to hurt, whine and unravel. But, because of everyone cheering me on from the sidelines, I found my center, eased into the pace, opened my heart to let everything in, controlled my breath, experienced it all — the good and the not so good. It's all a part of it. Some of the greatest gifts in life are only revealed through unbearable acts of patience.

I'm in the home stretch, the finish line clearly in sight. I see it lined with so many people who have cared for me along the way. Without them, I might well be hobbling along, crying and ready to quit. Instead, I'm pumping those arms and digging deep.

After four crazy months, I've made it to the end ... only to be rewarded with a thousand new beginnings. 

Monday, April 13, 2015

Weekend Wrap-Up: See How We Run



This weekend we were running. Running around, running ragged, and running as in literally running.

After a long week for both Dr. Fabulous and myself, we ended up getting a very last minute opportunity to go to a charity gala. It was for a foundation supporting individuals with traumatic spinal cord injuries and was held in the gorgeous Rittenhouse over in Philly. Since I didn't have a dress that covered my newly acquired radiation burn, lymph node scar and blue tattooed dot on my chest (no time to shop for anything new and hadn't really thought about this stuff until 20 minutes before putting on something in my closet), I went into the evening feeling a little insecure. And, of course, tired both emotionally and physically from week 3 of radiation. But, once we were actually there? It was a very inspirational event and you recognize really quickly that some stupid scars and burns and a tiny dot in the center of your neckline really don't matter when you can use your arms and legs; walk, dance, run. I mean, it's humbling. There are incredible twists of fates that happen in this world, but when a spirit soars above it... it's just magic.

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

Saturday morning we were exhausted from a late night but had to spring into action for the first of two soccer games at 9:00 am. Soccer and Swimming are a constant this time of year. Starting this week, all three girls also began a new running program called the Healthy Kids Running Series. 


These are real, awarded, timed races held weekly where kids are divided into developmentally appropriate distances and then get to have that race experience while also keeping it really fun. 

CB hung with us and cheered. 


Rella ran the quarter mile with the Kindergarteners and First Graders. She had the eye of the tiger, with first place on her mind.


She came in second out of the girls (they do separate places by gender) and was super happy that her friend came in first. Though next time, she said she wanted to try to "beat her."


Tink ran the half-mile with the second and third graders. She was more laid back about the whole competition thing, but gave it her all because this kid can't do anything without applying herself to it wholeheartedly. We think she came in fourth, but not sure. I'm not sure she really cared, either.





CB won the pom pom shaking competition. She did a really awesome job sitting quietly on the sidelines and entertaining herself while her parents cheered and snapped photos and acted like fools.


Pink ran a mile with the 5th graders and Middle Schoolers.


She is so small, even for her grade. She looked so little out there. I was worried she'd start feeling upset during the run because she's my one who is prone to feel insecure and self-concious. She can be her own worst enemy sometimes.




But she looked great and she did an awesome job! She told me later that when the race first started, she was at the very back of the pack. She said she felt really embarrassed at first, but then told herself "You know what? Who cares! I'm just competing against myself." This made me very, very proud.

And, by the way, because she has such an awesome sense of pacing, she ended up passing a bunch of kids who came out of the gate way too fast. Just like I warned her NOT to do. She finished strong - mid-pack, with everything to be proud of. Especially that positive attitude and a good race plan.


They all did great out there and the day was absolutely gorgeous and sunny for the first time in forever. You know, running was always my "sport" as a kid, so I was tickled that the three of them were out there giving it 100%. I was especially proud of Pink who is really coming out of her shell this year and challenging herself to try new things. Even though CB didn't participate by running, it was so nice to have her at a community event to watch her sisters without it turning into a huge ordeal and stressor. That made the day so much better.

I too went out running this weekend and it felt freakin' awesome. I also got on my bike and did a 10 mile loop with a friend. She broke the ice by getting on her new road bike and biking for the very first time ever and I broke the ice just getting back on the bike again - haven't been on since October. Since we are both signed up for a triathlon in June, it was good we finally got out there. Now, I just have to get in the pool and build up my swim again. Why I do this to myself, I have no clue. But, whatever.

And THAT'S the weekend wrap-up folks. Running straight into another crazy week. I'm at the half-way point with radiation - three weeks down, three weeks to go.  It's a sprint to the finish and at this pace of life? I will be crossing that finish line before I know it.
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