Update...

Tomorrow I am scheduled for what will hopefully be my last chemotherapy infusion. Almost six months of treatments and, hopefully, my last one is less than 24-hours away! I say "hopefully" because I do not yet know if I am in remission and will not know until I have a PET scan, four weeks later and the course of care going forward weighs heavily upon the results of that scan. The waiting for the test to determine if the cancer is completely gone, will likely be the hardest part of the entire ordeal. My body will slowly recover from the toll that chemo has taken, but my mind will be anxious and fearful of the unknown. Now, during the course of my therapy I feel as though I am doing all I can to destroy the cancer, but after Tuesday when I am no longer receiving active treatment, the fear and worry will set in. "Scan-xiety" is a very real part of recovering from lymphoma as scans are scheduled at regular intervals during remission than gradually spread out until the five year mark- a major milestone, I already have my sights on. During the course of the wait, I plan to combat the worry by staying busy, regaining a normal level of activity, staying positive, enjoying time with family and saying lots of prayers. I have a couple of girls getaway weekends planned, a few dinners out lined up and some fun events to look forward to, but will wait until after a clean, cancer-free scan to let the real celebrating begin...

2B or Not To Be....

At the time of my diagnosis the cancer was present in two quadrants of my body; it was stage II. It had affected lymph nodes in both sides of my chest, my supra-clavicle region and possibly my neck. During the initial staging, an A or B distinction is also allotted. "A" signifies you are not yet symptomatic, "B" means you are experiencing symptoms of the disease and therefor it is  generally more advanced or aggressive and requires more treatment. I was a B. My cancer was stage IIB. I had cancer and I had symptoms. I was not in denial about these symptoms, I was not afraid to get myself to the doctor, I was not nonchalant about my health. I was concerned, I was proactive, and I was thorough.  Despite all this, it still took over two years to get a diagnosis. Two years that the cancer was growing inside me.  I experienced my first night-sweat in June of 2011. I remember it well, waking in a panic, waking my husband, drenched to the core, having to change the sheets- talking  about it with my neighbors the next morning as we gathered on the street, sipping our coffee and watching the kids play. In perhaps my over-sharing, I was reassured it was normal, many of my friends had night-sweats on occasion. And I was relieved until it happened again. This time, as any concerned mother of five with slightly hypochondriatic tendencies would do, I googled my symptoms on WebMd. I read the ten page list of possible causes, everything from "completely normal part of aging" to "Leprosy",  however the one that jumped out at me was Lymphoma. I shut down the computer and called my primary care physician. She examined me, was not concerned but ordered some tests to help relieve my anxiety. When everything came back normal, I was temporarily relived but as the night-sweats continued at random, so did my concern. I returned to my doctor who, at a loss, suggested it might be hormonal. I went to my OBGYN where I had more tests, then followed back for more tests. With still no answers I went to Endocrinologist, who specializes in tracking the function of all the bodily processes that contribute to sweating. I had several appointments and many tests, blood work, 24 hour fasting tests, and 24 hour urine tests. I checked back in with my primary doctor during this time and had a chest X-ray.  Everything came back "normal." Perhaps it was stress or anxiety I was told time and time again, I did have five kids, including three under 3 years old. Maybe I was stressed, and these sweats were my body's way of working it out? I thought I would tackle the stress, I hired a babysitter more often, worked out five days a week, took yoga classes and even enrolled in a course at MGH on "Utilizing the Relaxation Response." However, I knew my body, knew my mind, knew that something was not right so I pushed on, I got a second opinion from a Primary at a Boston Hospital, a third at a homeopathic practice. When nothing turned up, and still feeling something was not right, I returned to my primary, who at my urging finally sent me to a Hematologist/Oncologist. I thought if a Cancer Doctor says it is not indicative of anything and not to worry then I will I listen and move on, recognizing this is just an unusual, sometimes inconvenient symptom, but something I can definitely live with. I just couldn't live with the worry. Once again everything checked out fine. I thanked God that I did not have cancer and carried on with my life until I soon discovered a hard nodule in my neck. It was small and hard, but after a week when it did not go away, I went to my Doctor. She told me it was certainly not lymphoma and to follow up in a few months time. I went back for the follow-up and mentioned a cough which was waking me up at night. She attributed it to allergies and suggested a humidifier. She recommended yet another follow up and if the node was still present in three months then she would send me to an ENT for a biopsy. Well, like any concerned mother of five with slightly hypochondriatic tendencies, I did not want to wait three months for a biopsy so went ahead and made the appointment with the ENT on my own.  I told him of my symptoms, he examined me but did not find the lump concerning enough to warrant a biopsy. I returned in six weeks for a follow-up with the ENT and the nodule was still there but he was still not concerned so I tried not be either, after all I was feeling fine, working out five days a week, teaching dance classes, chasing around my kids and getting six hours of sleep if I was lucky. Could I do all this if I had cancer? The end of February I had my regular annual physical and was declared "the picture of health". Hard to fathom that at that time, the upper half of my body was filled with cancerous cells. After all those many trips to many different doctors it would only take one trip to the Emergency Room less than two months later, and one CT scan to discover what was hiding on the inside. Alone in hospital bed in the middle of the night I found out about the enlarged lymph nodes pushing on my lungs and heart. I had stage IIB cancer.
I choose not to think about what if it was found earlier?
I choose not to think of how it took two years and managed to reach stage IIB.
Instead I choose To Be.
To be in the moment.
To be happy.
To be positive.
To be forward thinking.
To be here everyday...

How Cancer Has Changed Me

Cancer has changed me in ways I never imagined.  I think back to the person I was in the spring, navigating an over-scheduled calendar, reconciling baseball practices that overlapped with soccer games, arranging playdates, teaching ballet classes, driving carpools and checking off the grocery list. Overly concerned with keeping the house clean, I nagged the kids to put away their shoes, keep their toys in the playroom and their backpacks out of sight. My biggest complaint; not enough hours in the day to get the laundry put away, my biggest pain; a nagging case of plantar fasciitis which was hindering my running schedule. How quickly that pain in my heel dulled when I awoke from surgery, unable to move, fighting to keep a cough at bay as the pain ripped through the stitches inside my chest. How trivial an immaculate house seemed as I spent a week in a sterile hospital bed not allowed flowers to brighten the room for fear of introducing foreign germs.  How wasted the hours spent cleaning and folding leading up to my hospitalization seemed when torn away for my children for seven days, recovering from surgery while they were out on their school vacation week.  How petty my stress over how my boys had performed in tryouts, and worrying if they would have to miss a soccer tournament to make a hockey game, worrying did the girls have new matching outfits for Easter, and bows and cardigans, worrying if I had completed enough crafts and set out enough decorations to impress at the holiday gathering?  How quickly these stresses fade while waiting to find out what kind of cancer you have.  How quickly the five different colors of ink which marked up our calendar, blurred together while waiting to discover my prognosis and wondering how many more calendar pages I would be able to turn and if I would have a lifetime to celebrate those carefully circled birthdays and highlighted dates of recitals and play-off games.
Cancer has changed me.
There are the physical changes; new scars- one across my ribs, a smaller one on my stomach and this beauty which has left me still without feeling across much of my back, all from my surgery in April.

Then there are the two incisions on my chest from the surgery implanting my portacath and the noticeable bulge under my skin, evidence of the metal disk resting just below the surface.

There is hair loss. I have been slowly shedding since a month into treatment and with the amount of hair left on my pillow in the morning or the amount found in my hair brush after a single use, it's a wonder I have any remaining at all. I now understand why many patients elect to shave their heads before treatment begins to avoid the heartache of watching strands fall to the ground as your part widens and the paleness of your scalp peaks through. My hairline has receded and I never thought I would be the first in my family to inherit my grandfather's male-pattern baldness. My eyebrows are barely visible, elongating my forehead and distorting the familiar proportions on my face. Then there is weight gain. While I thought chemotherapy would lead to weight loss from the nausea, I was surprised to learn that quite the opposite would be true. A twenty pound weight gain is the norm for females my age going through chemotherapy, and unfortunately this has been the case, due to the steroids, the fluids and lack of strenuous exercise (and let's be honest- those delicious meals being delivered every night. If someone spent the time making me and my family a yummy dinner and dessert- damn right I will take the time to enjoy it)!

Being diagnosed with cancer has changed the way I conduct myself as well. I have become inclined to say "yes" more. Yes, we can go out for ice-cream again tonight. Yes, I will watch your dance show in the living room. Yes, I will watch you perform your magic trick which I taught you and yes I will pretend to be astounded as you pick the card I was thinking of. Yes, I will read one extra story. Yes, I will read it again. Yes, you can sleep in our bed. Yes, we can eat dinner outside, yes, we can eat it up in the tree house. Yes, you can wear that, yes, I know it's a costume. Yes, I will come sit and watch the movie with you, and yes, we can eat popcorn in the good room. Yes, I will walk with you to the bus stop.  Yes, we can play Monopoly, yes, I still hate board-games. Yes, I will paint your nails, yes, I will let you paint mine. Yes, I will try and do a cartwheel. Yes, I will pretend to be the baby in your game of house. Yes, I will hold your hand and yes we can skip down the street. Yes, I will wear the painted pasta necklace you made me while I go to the store. Yes, I will join you in the water for a swim, yes I know it's cold and yes I do know how to swim! Yes, you can take the cushions off the couch to make a fort, yes, I will help you make it. Yes, I will lie next to you and hold you until you are fast asleep...

Yes, let's go away someplace we've never been. Yes, let's go to a yoga class together. Yes to a girls weekend away, yes to date-night in. Yes, lets meet for lunch, its been too long...

This diagnosis has given me the strength and perspective to say "no" more often as well. No, I won't be able to make that meeting after all. No, I won't put away all the laundry right now, no I won't bother sweeping all the floors. No, I don't have time to listen to you complain. No, I won't give in to negativity. No we don't have to leave yet. No, no you don't have to go.

Cancer has a way of breaking you down to a point where you finally understand what is truly important.  It has given me a greater appreciation for life; the people around me and the beauty in the everyday.

While chemotherapy can cause vision problems, it has helped to give my eyes new focus.  I notice more around me; the shape of a cloud, the hue of the sky, the call of bird, the delicate perch of a bumble bee on a flower, the sound of the wind whistling through the trees in my yard, the shape of the moon, the texture of a sunflower stalk.

I have become a more perceptive observer of my children, noticing how many times my four year old says "um" in sentence, how her twin moves her fingers in excitement. I note my son's new callouses from climbing and the flecks of green in my oldest's hazel eyes. I notice how my littlest circles her feet like I do when falling asleep and clings to her blanket with the same hand the whole night through.

It has given me a more profound appreciation for all the good around me. I have become the recipient of so much good will from others that it makes me want to be a better person. After constantly bombarded with stories of injustices and all the wrong in the world, it has taken through going through something like this to recognize how much good still exists.

It is truly humbling how many people have reached out to me. How many people were compelled to write, email, call, send help in anyway they could. I have been touched to hear from people I didn't think would remember me after so many years, so many people who are friends of friends, and many I will never get to meet.  I am amazed how the initial outpouring of support has been followed up by continued expressions of concern. Knowing I am in others thoughts and feeling the power of their prayers has given me strength. Having others share their own hardships with me and inspiring me with their stories of victory has given me courage.  
I recognize we all have our battles, many struggling more than I, and we are all just trying to do our best with the circumstances we are given.  
Now, I am more determined than ever to do my best; in fighting this disease,  in being a better wife, daughter, friend, in following through with my dreams, in helping others, in raising my children. I am not a saint, I still look forward to my children's nap time everyday and will be clicking my heals when I can leave them at school for a few hours during the week, but, I will make every attempt to appreciate the time we do have together, thank God for their smiles, the ability to make them laugh, to feel their love. I am not a saint, I still roll my eyes in line, beep my horn at slow drivers, love me some gossip as much as the next gal, but I am more careful when passing judgement, knowing we are all facing our own hardships. I am not a saint, I still want time to myself, make demands on others and like things done my way, but since my diagnosis I'm more ready to help, go out of my way, and to give of myself. 
Just recently, at an outdoor event with my sister and some friends, a young man collapsed before us. A crowd stood around gasping and staring as he began to convulse then lie motionless on the ground.  Without thinking I jumped into action running over to him and his girlfriend who was kneeling at his side. I checked his pulse, when I was informed that he had been stung by a bee just seconds before.  I yelled for an epi-pen, began barking orders, instructing someone to call for help, pleaded for a doctor. Soon a friend produced an epi-pen and handed it to me. Everyone was counting on me to help save this man's life. I removed the cap on the epi-pen then hesitated as I realized he was wearing jeans, obscuring the place on the thigh where the shot of epinephrine is to be administered. Not certain the injection could go through the thick denim, I told his girlfriend to unbuckle his belt. She sat crying and helpless, seemed to be in shock, so I began the task myself. Here's the embarrassing part; just as I got the man's pants unfastened and pulled down revealing his boxers, he suddenly regained consciousness, sat up, out of it, but fine. Turns out he didn't really need to be saved after all.  Although an awkward few moments transpired as the man who had just come to was filled in on what had happened, why I was kneeling beside him and why his pants were undone, he and the girlfriend were most thankful that I was there and more than ready to help. Before my diagnosis I likely would have been sitting on the sidelines with the rest of crowd but now feel a greater urgency and purpose. I am compelled to be that person who goes out of there way, apparently, sometimes whether needed or not... 

Earlier this week while out for a jog, elated to be running again (barely keeping pace with the mailman, who was walking and delivering mail), I came upon a tow truck with a white car bearing a handicap license plate, already loaded up on the platform of the flatbed truck. A woman with two prosthetic legs was attempting to climb up the ladder and get into the passenger seat in the trucks cabin. I saw her struggle as her legs twisted beneath her, missing the step and getting caught under the medal rungs. Using her arms she continued to pull herself up holding on to the handrails. I was tempted  to look the other way as not to 'embarrass' her, justifying to myself that 'she wouldn't want any help', I would 'hurt her pride'. But after a few months with my own health struggle, I know how much those offers mean. I appreciate the smallest gesture, a nod of understanding, anything to lighten the load or help ease the pain. I now know what the right thing to do is and I am more inclined to do it. I walked over and asked how I could help. She was in quite the predicament, legs not able to bend to fit in the truck's compartment and  a seat which couldn't be pushed back. I supported her foot giving her some leverage, and guided her legs as the driver pulled her hands from his seat. She finally made it to the floor of the cab but couldn't lift herself onto the seat from that position, but she was not giving up.  I climbed up onto the steps and helped pull her up and into the seat. I untwisted her legs as she sat back, utterly exhausted- we were both exhausted, it had taken everything we had. She was out of breath as she whispered, "Thank you, I'm not sure what I would have done." I continued on my walk, feeling the fresh autumn air on my face,  I just wanted to scream, I'm alive, I have two legs, and I am walking today- Thank You God.
I am no saint, I loose my patience, I say things I don't mean, but I now take the time to talk to God more and thank Him for the gifts in my life.  And there are so many, and sometimes it takes going through something hard, something sad, something that challenges you, something that makes you question, something scary, something like cancer to make you realize that .

Acadia Adventures

We have now been home a couple weeks from our family vacation at Acadia National Park, and have had time to unpack and let all of the beautiful memories soak in. I am blessed to be feeling well, handling my treatments and able to enjoy the time with my husband and children and make the most of the summer between doctors appointments and chemotherapy (although I do get sick to my stomach just typing that word). We had such a great time we decided as a family, we would make every attempt to visit one new National Park a year, and I am already looking forward to finding next year's destination. For a short vacation, we managed to pack in a lot and see most of the big sites. The weather can make or break a vacation, especially one involving camping and hiking, but the perfect weather we experienced certainly paved the way for a most memorable trip .

Here's our itinerary from our whirlwind visit-

Day 1: We headed out bright and early, giving the kids breakfast on the way. The car was packed and ready the night before, so we loaded the coolers, got everyone dressed, stopped for a coffee and hit the road. It took about five hours to reach our destination, a campground situated on an inlet on Mt. Dessert Island where we promptly checked in and found our campsite- a private waterfront spot we had reserved just a few days ahead. The boys got busy assembling the tent (a Father's Day Gift which sleeps 8-10) while the girls poked around down on the rocks looking for crabs.

Once the tent was up, we did some exploring down by the water and in the surrounding woods.

From there we packed everyone into the car and headed to check out Bar Harbor. As this area of Maine is known for its blueberries, we hit an adorable bakery to try some blueberry muffins and blueberry pie, then wandered through some cute, albeit touristy shops. Having had our fill of savory blueberry treats, we headed to Acadia National Park, where we first stopped at the Visitor Center, got a great overview of the park, saw some neat exhibits, purchased our passes and talked with a Park Ranger to get info about appropriate hikes to do with the kids. We then set out on the Park Loop Road, touring through miles of reservation and stopping to admire some beautiful look-outs and vistas.

We then found ourselves at Sand Beach where the kids dipped their toes in the freezing water and played in this unusual sandy oasis of the rocky coast.

We then set off on our first hike along Ocean Path.

The kids loved playing along the rocks high above the water and collecting sea-life from the abundant tidal pools.

We hiked as far as Thunder Hole to see the ocean spraying high into the air from this famous natural attraction.

After the hike, we headed back to our campsite where we got a fire going for dinner.

The kids found sticks on which to cook hotdogs and we completed the meal with applesauce, pickles, chips and watermelon.

It was then time for s'mores, a real campfire treat.

I got the girls ready for bed while Jim and the boys tended to the fire. After such an active and adventurous day, they fell asleep almost immediately! We enjoyed some drinks by the fire, (beer from a local brewery for the hubs and some non-alcoholic cider brew for me) then spread a blanket on a large rock by the water's edge to watch the Perseid Meteor Shower which conveniently took place the weekend of our trip. It was a perfectly clear night for the display; the moon was small, the stars bright and we were far from the lights of civilization.  It was truly something to behold. My camera couldn't capture the glory of it so we took a mental picture. I joke about the mental picture because Jim gets annoyed with my frequent picture taking in my quest to capture every memory from my childrens childhood, and urges me to just take a mental.

We all slept surprisingly well for sharing a tent with five kids, sleeping in sleeping bags with nothing but nylon separating us from the hard ground below. Of course we traveled with a battery operated fan and my trusty noisemaker but the birds were still loud early in the morning. Everyone began to stir around 6:30, so Jim and the boys cooked some breakfast sausages over the fire and we all enjoyed some muffins and fruit. From there we set out back to Bar Harbor where we grabbed a coffee and a few treats before setting out on a walk to Bar Island, a small island only accessible by foot at low tide, when a sand bar forms allowing passage.

We walked over and wandered about until the tide started to come in and we needed to wade a good way of the way back.

The kids were then anxious to go swimming as the temperature began to climb. We returned to Sand Beach where everyone but me swam in the frigid waters and rode the tremendous waves.

Leaving from Sand Beach, we set out on another big hike, that around Great Bald Head.

This was more of a moderate hike which involved some climbing up boulders and rocks.

The girls were certainly up for the challenge and the higher we got, the more breathtaking the views.

Of course there were plenty of snack breaks (and potty breaks) along the hike and a picnic lunch at the top.

It was nearing sunset when we finished the hike so we drove to the top of Cadillac Mountain; the highest peak on the Eastern coastline, to watch the sunset and it was well worth the acclaim.

By then every one was hungry so we went to a great Lobster Shack right on the water in Bar Harbor for dinner.

The girls were thoroughly exhausted and went straight to sleep back at the campsite. The boys sat around the fire briefly before retiring to their sleeping bags with the promise I would wake them at 2am to watch the most prominent display of the Meteor Shower. I woke Jim and the boys and we tiptoed outside the tent to watch the sparkling sky, but unfortunately cloud cover limited our view.  Next time maybe I'll check myself, before rousing everyone in the wee hours of the night.

Day 3: We went to a General Store in Bar Harbor for a lite breakfast then headed for a ride on Diver Ed's Dive In Theater Boat. I had read some reviews online that this was one attraction not to be missed and I have to admit it was very cool. We boarded a boat and were introduced to Diver Ed, who scuba dived off the boat as we watched along on a giant screen. He then surfaced bringing with him treasures and creatures from the deep. The kids held starfish, lobsters, crabs, fish and even kissed a sea-cucumber. Diver Ed was thoroughly entertaining and the kids are still laughing about some of his jokes. They enjoyed pushing him over board, helping to reel him in and his underwater antics. We also saw whales, porpoises and seals on the ride. It was fun and educational and so neat to see Acadia from the water. 

After our early morning adventures we wanted to check out Echo Lake, a glistening swimming hole nestled between the mountains. There the kids swam in the fresh water which was relatively warmer than the ocean and we picnicked on the shore.    

We had one final destination we wanted to visit before heading home; Jordan Pond House, internationally known for its delectable Pop-overs and blueberry lemonade. Tables were arranged out on the lawn over looking Jordan Pond and the Bubble Mountains.

We did one final hike, this one around the pond, while waiting for our reservation, then enjoyed a delicious meal before heading home.

We left with five exhausted kids who all fell asleep not too long into our drive home. It was a much more peaceful ride home after three fun-filled days exploring our first National Park as a family.

Fourth of July Ideas

Nothing marks the official start of summer like a Fourth of July celebration. Ours is rich in tradition, embroidered in color and surrounded by food. 

The beach house is decorated in Patriotic buntings which hang from second story windows and small flags stuck into the ground line the walkway.

Blueberry pancakes topped with strawberry syrup make the perfect breakfast to kick off the festivities.

 

Kids and adults then assemble outside to enjoy decorating bikes, strollers and even the occasional antique car for our neighborhood parade. 

Red, white and blue crepe-paper form streamers which dangle from handle bars, red and silver garland weave through bike tires as flags embellish the decor.

After a group rendition of America the Beautiful along with other Patriotic songs, the parade begins led by the neighborhood marching band. It winds down a hill and through the narrow streets allowing scenic water-views of Buzzards bay and a far off glimpse of Martha's Vineyard. At the completion of the Parade, prizes are awarded to all participants and then it is time for some old fashioned family games, including potato sack and three legged races and a water-balloon toss.

Back at the house, we then get to work preparing for our late afternoon cookout.

On the menu are old favorites like hamburgers, hot-dogs, sausages, veggie burgers, corn salad, potatoes salad, Jeans-Beans, tomato panzenella, pasta salad, Barefoot Contessa's Orzo salad, chips and sliced watermelon.  

I assemble a summer sangria with floating red and blue berries, making the perfect festive refreshment, especially when served in mason jars with red and blue straws. 

Baking for, and then assembling the dessert table is always my favorite part of party preparation and makes the focal point of the festivities. 

I filled candy jars with red Twizzlers, patriotic colored lollipops and special edition 4th of July Tootsie Rolls. 

Using a rectangular cookie cutter I made American Flag sugar cookies. 

Whoopie Pies adorned with American Flag toothpicks look great when arranged on a cake plate. For another fun and festive treat, I placed Marshmallows on long skewers the dipped the top half in melted white chocolate then topped with red, white and blue sprinkles. These looked so cute standing up in a tall mason jar, then were used later that evening for roasting over a bonfire at the beach. 

Vanilla cupcakes and a coconut cake are frosted in white, then decorated with red and white grosgrain ribbon. 

A favorite festive dessert I also like to make every year is this Fourth if July trifle  I begin by cutting Sara- Lee pound cake into one inch cubes, then arrange along the bottom of the trifle dish. I then make Jell-O Instant White Chocolate Pudding and spoon 1/3 on top of the pound cake. A layer of cut strawberries, raspberries and blueberries is placed next, then a layer of defrosted Cool Whip. The layers are repeated two more times then berries decorate the top.

As darkness falls, our crew get ready to head down to the beach, blankets and cooler in hand to watch the firework display out over the ocean. I distribute glow sticks and sparklers and everyone enjoys lighting up the night and a "dynamite" celebration.