Beach Therapy

I am feeling about 95%. Feeling very strong, very normal, very me. With each recent treatment it seems I'm recovering further, getting much closer to my normal self before the next treatment. Much improved over the first few treatments. Let's hope this trend continues. I know I had several days of fatigue and acheyness, but it seems like forever ago. 

This weekend my parents "kidnapped" Craig and me for a day away in Rhode Island. My little brother (who despite being seven years younger than me, towers nearly a foot over me) joined in on the road trip too. So it was me, Mike and Craig getting nice and cozy across the back seat of my parents car, Dad behind the wheel, mom manning the music and AC/open window swapping. 

Like three five-year-olds we entertained ourselves in the back seat by pinching a clothespin onto odd places like my mom's ear or the back of each other's arms. Though I was squished between two grown men, I couldn't pick two that I'd rather be rubbing sweaty shoulders with for two hours. 

We stopped to stuff our faces with fried goodness at a forever family favorite: Cap'n Jacks for fish and chips, fried whole-belly clams, scallops and greasy French fries. It certainly hit the spot - the perfect antithesis to my collard greens and rice cakes diet of late. 

Then it was to da beach. The weather was perfect - 80s, but a nice breeze so you didn't feel like a sweaty mess. Narragansett Beach was packed, beach chairs and blankets with scantily clad bodies packed in tight like sardines, but we found a spot and settled in. 

Michael and I headed for the waves, despite the bone-chilling temp of the water. I came to the beach to swim and having grown up on many years of cold Cape Cod waters each summer, I know the trick of a quick dive under the water to shock the body into adjusting to Atlantic Ocean temps. I LOVE body surfing. Anticipating the right wave and timing it perfectly so that you ride the crest all the way in, then getting your body wrecked as the wave crashes and forces you into the sand is one of my favorite activities. 

I had my white bandana tied tight on my head to block the rays and not freak people out. I don't know what made me think that would stay on. It's been raining like crazy for weeks so the ocean was particularly tumultous. After the first wave took me under that sucker was long gone. Suprise everyone! Bald girl riding the waves. 

"I'd rather you lose your bandana than your top," says my brother after I muscle my way back out to him at the wave break line. True that, I thought. 

After a walk with Craig to the breaker it was max and relax time. Surrounded by my favorite people in the world I spread out on the Mexican blanket and fell asleep to the sounds of my mom and dad talking and Craig and Michael tossing the aerobie. So content. 

Then we mozied back to reality stopping for ice cream and iced coffees then take-home pizza along the way. 

My belly was full. My heart was happy. My skin tight from the salt and sun. My bathing suit and bottom full of itchy sand. A perfect summer day. 

Unfortunately, I know these feelings won't last. After Wednesday it'll be several more days before I can think about body surfing again. Wednesday is going to be a very big day. At 7:15 a.m. my mom and I will be at Jefferson Radiology to have my port-a-cath surgically placed in my chest. I had a consultation today which helped calm my nerves some and helped me to better understand the great advantages of this creepy little device. From the "twilight" state I'll be in after the port insertion, it'll be a drive over to the cancer center where I'll jump right into my sixth chemo session ... this time through my newly minted port. If all goes well, the whole process will be faster and there'll be no pain from needles or the drugs themselves. Thank God I have my mom to make sure I make it to where I need to be and get through the day in one piece. It's sure to be a woozy whirlwind. 

Stoicism

Sto⋅ic

 [Stoh-ik]

–adjective

1.	of or pertaining to the school of philosophy founded by Zeno, who taught that people should be free from passion, unmoved by joy or grief, and submit without complaint to unavoidable necessity.

I'm currently reading Dr. Bernie Siegel's Love, Medicine & Miracles: Lessons Learned About Self-Healing from a Surgeon's Experience with Exceptional Patients lent to me by a wise woman. It's fascinating and I think everyone should read it whether or not they're battling an illness. His holistic approach to healing makes so much sense.  

In it he talks about predispositions to cancer. Two being stress and suppressed emotions. I never considered myself a stressed-out person. In fact, many people, including my former boss, were always commenting how markedly calm I am under pressure. I work best under pressure and thrive in a fast-paced, deadline-driven environment (I believe that may be a line on my resume ...). 

Maybe responding well to all that pressure isn't always a good thing. Turns out unexpressed emotion can actually suppress the immune system and can manifest itself in disease. I very, very rarely cry. I don't get worked up or easily overwhelmed. I don't think I've ever had a fight with anyone in my life, well besides fights over Ken dolls and crab rangoon with my siblings. I don't yell. I don't get angry. I see lemons as lemonade. I'm even keeled, generally content and happy with whatever I'm confronted with. I've always been able to step back from a situation, formulate a plan and get 'er done. 

Dr. Dailey got it right in one of our first meetings together when I found out I had stage 4b cancer. I asked how that was possible when I wasn't feeling that awful. "Well, you were probably being very stoic about it." Ding! Well look where being stoic got me. 

Since my May 8 diagnosis all has changed. I liken my emotions to Mr. Toad's Wild Ride at Disney. Yesterday, I started crying while listening to a Bach concerto because the notes were just so beautiful. A couple weeks ago someone referred to me as "very ill" in a note and I screamed at the top of my lungs for a good five minutes. Today I was so overwhelmed with love for Sammy that I hugged her and laughed at her tail wagging furiously for about 10 minutes. I'm constantly doting over Craig now and feel like I keep falling in love with him all over again --- I think it creeps him out a bit. I must say, all extremes feel very healing, though it may make me seem a bit crazy.  

One of the questions Dr. Siegel asks his patients is: "What happened to you in the year or two before your illness?" Come to think of it, the past two years were quite eventful. 

In August of 2007 alone, I:  

-finished planning a wedding

-got married

-bought our first home

-delved into our first mortgage 

-moved out of our apartment

-survived a hurricane on our honeymoon

-had a run away car crash into the neighbor's garage on day 2 in the neighborhood

In the past year, I: 

-lost my grandfather

-lost Craig's grandfather 

-lost Craig's uncle very suddenly (in fact, this is the first time I learned of Dr. Bernie Siegel as he actually spoke at Kevin's funeral)

-lost Craig's aunt to brain cancer 

-got a new job 

-made the tough decision to leave an old job 

-got a dog 

If stress and cancer are interrelated, then I guess I can see how it could have developed. 

Siegel then asks his patients: "Did he or she openly grieve, rejoice, and face the challenge, or try to be calm and stoical?" Damn, that stoicism again. At the time, I never felt stressed during any of it, but now I see that maybe I didn't let myself accept that I was. I was always worried about how everyone else felt and trying to be strong for them. Craig is just the same as I am. Together we rolled with the punches, made each other laugh and smile and didn't let the little stresses that got others down get to us. Together we're one positive, smiley, stoic team. Maybe that's not always a good thing. Some of the things we've gone through were very, very difficult, especially losing his father to a long-fought battle with brain cancer just a few years ago. But we came out okay and stronger for it, because we always do. 

The loss of my Peppe two bitter cold Januaries ago hit me particularly hard. We were very close and I credit so much of who I am to him. He, too, loved writing and this blog is dedicated to him. I felt a very deep grief for a long time, still do. It was the first close family member I've ever lost and being a very small family - no aunts, no cousins, just the now 9 of us, it was a big hit. It took every ounce of strength I had to write and read his eulogy, but it was something I needed to do. Of course, I smiled through it, laughed and shared stories and didn't shed a tear in front of anyone at the service. When I was alone, and only when alone, that was another story. 

The last in a series of four questions Dr. Siegel asks his patients is "Why did you need this illness?" This is what I'm exploring now.

Says Siegel: "Sickness gives people 'permission' to do things they would otherwise be inhibited from doing. It can make it easier to say no to unwelcome burdens, duties, jobs or the demands of other people. It can serve as permission to do what one has always wanted but has always been 'too busy' to start. It can allow a person to take time off to reflect, meditate and chart a new course. It can serve as an excuse for failure. It can make it easier to request and accept love, speak your feelings, or otherwise be more honest. Even a cold has a meaning. Often its message is 'You've been working too hard. Go home and nurture yourself.'" 

I by no means blame myself or how I've lived my life thus far for getting me to this place. But I do see the fact that cancer chose me as an opportunity, not a punishment. 

Craig's mom always talks about listening to the little messages. Sometimes you get a tap on your shoulder and just ignore it. Then, another tap. If you keep ignoring it, you may end up with a piano falling on your head. I think this is my piano. I just haven't figured out exactly what that something is that I'm supposed to learn or do yet, but I'll get there. 

Until then, watch out. My emotions are running wild and free into the wilderness that is self-discovery. There's got to be a reason why this is happening to me and I will find it. 

Will Enough Ever Be Enough?

There may be fleeting moments when I don't think about it, but my cancer is a constant presence in my mind and in my body. I think about it in everything that I do --- not in the sense that it controls everything I do, but in the sense that I think of how everything that I do will affect the cancer. Maybe others going through this can remove themselves from it, but my mind has always been a little overactive. Like a complicated orchestral score I have several tracts running at once, always one step ahead of the next. Now one of those tracts is a steady beat of cancer, cancer, cancer. 

More than ever in my life I view my body as a temple: I want the good things in and the bad things out --- now. I'm trying so hard to do all the right things for my body, but I worry that enough will never be enough or that what I'm doing is not the right thing. I want to beat this so badly that the ache for health actually hurts. The yearning to live a life even better, stronger, more aware than I had before cancer is ever-present within me, a constant echo in my head. I've always loved life and my presence in it, and I think that's what makes this that much harder. I wasn't looking for a way out. I wasn't looking for a change. I was perfectly happy and felt so lucky every day. Now every day I worry that it's all going to be taken away, like the beautiful life I had was so beautiful that it wasn't meant to last. 

Like the end credits of a movie, there is a continuous scroll of things I must do to beat this: eat, breathe deeply, exercise, stretch, meditate, love, live, learn, educate, listen, let out your emotions, control your emotions, disinfect, drink water, push yourself, don't be too hard on  yourself, don't ask why, find out why, remember to breathe ... over and over it echoes. 

When I shop for food I refuse to put anything in the cart that has an ingredient that I can't pronounce. All of the fat-free peanut "spread" or butter substitutes that I used to eat sicken me now when I read all the chemicals listed in the ingredients. Give me raw, real vitamins and sustenance. My diet has become like a second job. I snack throughout the day on raw peanut butter, steamed kale, raw almonds, Greek yogurt, blueberries, bananas, strawberries, soy milk, crisp bread, lots of cereal and granola, whole grain anything, spoonfuls of flax seed. I've started cooking more meals. For me, a kitchen illiterate, this is a big deal. Recipes from Real Simple magazine are my new favorite experiments. I've taught myself how to grill salmon (big Omega-3 booster), craft many salad varieties and work fresh veggies and herbs into most of our meals.

I've become probably over-paranoid about contracting some kind of germ. More than the fear of the lymphoma spreading is the fear of contracting something that my body cannot fight as my white blood cells are few and far between and the ones there are occupied with the cancer battle. Craig is building me a fantastic walk-in closet as a birthday present. Last night he was sanding down the joint compound on the sheet rock without a mask on and when I walked into the room the air was filled with white dust. I freaked and pulled off all the sheets and covers to throw them in the wash and completely lost my cool yelling that I can't be inhaling these chemical toxins and that I'm fighting so hard to beat this and something stupid like this could kill me --- or worse, get him sick. Afterward I felt awful. This morning he wore a mask and I slept downstairs. I was never a germaphobe. I was a firm believer in the "five-second rule" and I confess that a quick sweep under running water was enough to wash my hands, soap was a bonus when I had time. Now, I sing the entire tune of "Happy Birthday" in my head to know that I've scrubbed and lathered enough every time I wash my hands ... which is hundreds of times a day. 

Yoga class has become a sanctuary. It has done wonders for my strength and flexibility. After each chemo treatment my muscles knot like nothing I've ever felt and the achyness doesn't subside until a few days before the next treatment. Yoga has taught me how to breathe so that my body is filled with the oxygen that it needs to push out the toxins it is holding onto. It has allowed me to elongate my sore body and become conscious of my tender and my stronger areas. The meditation and relaxation aspect had also been extremely beneficial. Every time I'm getting closer to clearing my mind, pushing out that cancer, cancer, cancer drum beat. It'll take much more practice but I truly believe in the link of mind and body in overcoming this. I like that in class I don't have to talk anyone but you can feel everyone's positive energy and peaceful auras. The silence of only the gentle music and common breaths feels unworldly. I can go at my own pace and I never feel judged if I have to revert to extended child pose or don't have the perfect posture. However, I've found that my balance and core strength has remained and I've been proud of the poses I can master. 

My walking/jogging/hobbling continues. I try to get out every day. This weekend I want to try breaking out the bike and see how that goes when I hit the trail. When I feel my blood pumping I try to imagine it pumping out the cancer cells. The more oxygen I get in there the freer it flows. Every day in the shower I scrub with a detox mineral scrub to give those bad toxins a better chance of escaping. I then slough with a natural bristle body brush removing dead skin cells that might block the way for what I imagine is the constant escape of badness for my epidermis. 

Today I go check in with Dr. Dailey and I have a slew of questions for him and hope to come back with some new plans of attack ... and maybe an appointment for a port insertion ... as my phlebitis is flaring up again. Looking forward to my mid-way PET Scan where I hope to see some assurance that all of this effort and writhing chemo side effects are worth ever bit of the pain and more. 

Chemo Day Five

Another one down. And as always, another surprise occurrence, but I survived. However, everything was just a little bit off for this treatment. 

On the way there, my mom and I saw a woman bending in the middle of busy Route 10 to peel a hot, fly-covered dead opossum off the double yellow line of the street. Gloved hand alone, no mask or bucket, she picked the thing up by its rubbery tale and carried it to her truck. An unmarked truck, mind you. We weren't sure if she was planning on cooking it up in a stew or adding it to her taxidermy collection. Whatever she was doing, all I could think was: "and I thought I was having a bad day ... ." At least I wasn't scraping road kill off the steamy pavement. 

It was a Thursday, not the customary Wednesday, which means that the entire staff at the Cancer Center was different and I knew no one except the oncology nurse who gives me my Neup shots every other week. Luckily, she is the sweetest nurse I've met and I was so happy to have her inject me. When we arrived, all of the computer systems were down so they did not have access to records of my prescribed dosages, nor access to my past blood counts. My white blood cell count was low and they considered not giving me treatment, but it was decided that I could go ahead with it ... thank God. Nothing worse than getting yourself pumped up for something only to not get it over with. I didn't see the doc since my doc wasn't working, but 

somehow they were able to draw up my dosages and all was good. 

Also different, I did not wear my Minnetonka moccasins and I wore cropped yoga pants. This was not good. I forgot how cold I tend to get with some of the drugs passing through me, plus the AC was cranking. Next time, I will not venture away from my moccasins which always keep me feetsies at the perfect temp, despite the July heat. 

Despite all of these elements being out of whack, I received a flawless IV insertion ... a one shot deal. No wriggling and failed attempts. This made me breathe easy. She again felt through many of my veins noting the hard and collapsed ones, but was able to find a useable entryway to my circulatory system. She also gave me preventative Tylenol, which she said helps to counteract the flu-like, achey symptoms that I end up with as a result of the Bleomycin. I was then instructed to take Tylenol every six hours for the next 24 hours ... this was news to me. But I guess that's the bonus of getting to work with another nurse and getting another opinion. 

Though the insertion was good, the vein couldn't hang with the Adriamycin. I had what is called a vein "flare." The Adriamycin is one of the chemo drugs that is so strong that the nurse needs to administer it as a slow, push syringe, rather than through the IV drip. The nurse needs to sit with me through the process. Suddenly my arm started developing a red rash as a result of this "flare." She had to stop administering the drug and coated my arm in hydrocortisone cream then also started me up with an IV bag of Benadryl to decrease the flare-up reaction. Though the Benadryl didn't make me fall asleep as she suspected it would, it made me feel very woozy and uncomfortable. I was ready to leave after that, but still had the long and slow Decarbazene to go, my least favorite of the four. This is the one that burns through the veins, but with the help of a couple instant ice packs, the feeling is numbed. 

My mom and I popped in the DVD of the final Broadway performance of Rent. This helped greatly to pass the last couple of hours of what felt to be a marathon chemo session. I've seen the show I believe five times --- on- and off- Broadway, but now I see it in a whole new light. The songs and the lessons have always been meaningful and moving to me, but now being in a similar state of life, a person "living with, living with, not dying from disease" the lyrics ring true all the more: 

"No Day But Today." 

We hit up the Simsbury Farmer's Market on the way home (after a delicious bacon, egg and cheese on cheddar everything from Brookside, obv.). I picked up some snap peas, but had to sit on a bench shortly after getting there. The Benadryl really wasn't settling well. Then we had to pick up my meds at CVS and I thought that I might hurl right there are in Pharmacy "Pick Up" line. I did my yoga breathing and grabbed for a pack of peanut M&Ms, which instantly curbed the nausea ... crisis averted. 

Then it was home, finally home. I curled up with my prayer shawl and a Guiness glass of Miralax-filled apricot juice and settled in for a long, hard drug-induced coma. Sammy by my side as always. 

I'm Gonna Eat Lighting and Crap Thunder

I'm going in for treatment 5 today, the start of my third cycle of ABVD. I wouldn't exactly say I'm looking forward to it, but let's get it over with. Bring on the poison. 

I had a "bonus" day of normalcy yesterday as my chemo was pushed off a day due to my oncologist's vacation. Because he went away, I got my own little vacation from the chemo recliner. The day was beautiful - the perfect temp and not a cloud in the sky. I set up my "office" outside and felt very accomplished. My work projects are in order, the house is "clean," the bills are paid (rather, at least in a pile of "to be paid"), I've caught up on e-mails and washed all the laundry. I'm ready to curl back into chemo ramificationess. 

Last night was spent under the stars at Simsbury Meadows at the Talcott Mountain Music Festival for a concert of Billy Joel music featuring Michael Cavanaugh, of "Movin' Out" fame and the Hartford Symphony Orchestra. We sang and danced to "Piano Man," "Pressure," and even "The Crocodile Walk" with our gang of T'ville neighbors and their adorable kids. Even better than the show, I got to catch up with many of my former Arts Council colleagues also there on the lawn. Truly amazing people ... it was great to see their always positive faces. Some people just always know what to say and do and that crew epitomizes those skills. 

All in all, it was a great run this time around.  I can't even remember the bad days. Let's hope the strength continues through this bout. Like my idol, Rocky Balboa, I've put in the training ... minus the raw egg breakfast shake .... and am ready to go the distance.  Cue the fight music. Now to face Apollo once again.