Robotic Box Checker

I thought I was going to get my drains out last week.

I was wrong. 

Unbeknownst to me, the total drainage per side needs to be below 30 cc per day for two days consecutively. Not knowing this, I arrived at the surgeon's office only to be informed, rather snippily by the nurse, that I was not going to be having them removed that day, the next day or probably not until the following week.

When I questioned why she said that I was draining more than 30cc's for the day. When I replied that I didn't know that she said, "I asked you when you called this morning." 

Technically she did. However, she did not ask, "Are you under 30cc's for the day?" What she asked was, "Are you under 30cc's?" I replied that when I emptied the drain that morning it was less than 20cc's. 

She got nippy. I got snippy right back and said, "You'll have to excuse me. This is the first time I've had my boobs cut off so I have no idea how things are supposed to work."

Then I had a massive meltdown... and the nurse got a lot nicer.

But, I still spent the day in bed crying. I was devastated. 

The drains hurt. 

I mentioned previously that the drain on the right was killing me. It was super painful and as it healed it got worse. Add suction pain to the drain pain and I was completely miserable. Seriously, it felt like my skin was being sucked into my chest. 

Sleeping has been nearly impossible which has contributed to my deteriorating emotional state and increased depression. Two antidepressants a day did little to help me. 

Don't get me wrong, I could and did, push through most days but all it would take was a pin to drop and I was off and blubbering again. 

I'm not the worst at asking for help but I'm not the best either. 

Fortunately for us, people have been better at helping than I have been at asking. 

Dinner has been delivered every other night by an army of friends and neighbors. The kids have had transportation provided and extra play time at friend's houses so I could rest and my staff has been UNBELIEVABLE! 

Honestly, I couldn't ask for better employees! I want to go into detail about these women but I will save that for another day and give them the full post they deserve. 

Fast forward to this week and my drains were removed on Wednesday...finally. 

We arrived at the surgeon's office and checked in. 

The nurse (same one) came around the corner and told Glenn that he couldn't come in. I responded with another  massive meltdown...like snot bubble, hyperventilate meltdown. 

Persistent pain is exhausting. I was worn out and clearly incapable of controlling my emotions.

Fortunately she relented, let him come with me and my drains were removed. 

The left one was uncomfortable but the right (the one that's hurt the whole time) hurt like hell! The nurse had to stop halfway through removing it so I could take a break. 

She also removed the steri-strips from the surgery and it looks so good! The incision is still a little wrinkly but it's flattening out a little each day. 

I did apologize for being such a nut job in the waiting room. She told me it was ok and went on to explain that since she was in the room alone she was afraid of having my husband pass out (something that has happened with spouses before) and she would not be able to take care of him and pull the drains at the same time. 

She told me I didn't need to apologize but I did again anyway. I do feel badly. 

Without the drains in, both my demeaner and my range of motion are improving. I'm not crying at everything and I even helped on some of the cakes this week! 

Maybe I'll even be able to fold the massive pile of clean laundry that has accumulated in the house. 

Yippee. <snark>

Glenn washes and dries but doesn't fold. 

After lunch we met with my oncologist, Dr. Tedeschi at Penn Medicine. 

Before the doctor came in a technician came to take my weight, temp, oxygen level etc. then began asking the barrage of general questions. The best one was, "Are you experiencing pain?" Glenn snorted, I laughed and said, "I just had my drains removed, so today is probably not the day to ask." She looked at me like a deer in headlights and asked, "So you have pain?" I replied, "Yeah, yeah I have pain." 

Then she asked...

Wait for it...

...

"Where?"

"Where they cut my boobs off!" I snarked. 

Really?!

C'mon people! I understand that these are trained individuals but seriously, can we bring back common sense?! They are not just trained but over-trained an incapable or not allowed to think for themselves. 

It was like speaking with a robotic box-checker. 

The Oncologist was a different story! I really like her. She is smart, funny, compassionate and has common sense! 

She didn't brush my concerns aside about having two businesses and needing to be as available as possible. When discussing the chemo schedule and possible side effects she made the suggestion of Fridays for infusion. This way if I have a negative reaction to the chemo my down days would be Sunday and Monday when the store is closed anyway and I wouldn't have to worry about finding someone to cover my hours. If it goes well and I feel up to it, I can have the infusion in the morning and then work in the afternoon! 

If I don't have any reaction to the chemo, I can switch my infusion days to Tuesdays in Kennett Square vs Friday's in West Chester. The difference in drive time is about 25 minutes each direction so being able to move to Kennett Square would be fantastic! 

Dr. Tedeschi did say that I would probably lose my hair. I replied, "Well, a summer without shaving can't be all bad right?!" She looked me in the eyes, smiled and said, "I like you. We're going to get along really well." 

I know for some losing their hair can be very traumatic. Truth be told? I'm sort of looking forward to not having hair. I've had a life-long love/hate relationship with the stuff. It is extremely frizzy. I once even had a hairdresser refer to it as fuzzy! Not having to deal with it at all might be a welcomed change for a few months. 

Now onto the chemo regimen....

I will be having Taxol + Herceptin infused via a port once a week for 12 weeks and then just the Herceptin once every three weeks for the remainder of the year. 

Many people are familiar with the chemo cocktail of ACTH. This stands for chemotherapy medicines Adriamycin, Cytoxan (chemical name: cyclophosphamide), and Taxotere (chemical name: docetaxel), plus Herceptin.

ACT is much more harsh than just the Taxol and comes with so many more side effects. I am feeling very lucky. Studies have shown that, in patients with clear nodes and a mass less than 2 cm, there is no benefit in receiving the ACT with H and that Taxol plus Herceptin is just as effective. Had the mass been larger or the nodes hadn't been clear my treatment would be the ACTH. 

Chemo will start on June 25. 

When we walked through the door after the appointments on Wednesday the boys greated us with, "Did they take them out?" I pulled my shirt up to show them that the tubes were indeed gone. They both cheered enthusiastically and for the first time in almost two weeks I got to fully hug my kids. 

Something I hope to be doing for many, many, many years to come. 

Saying Goodbye

I cannot believe that we are almost in July! Between work, the children's programs of Karate and Tumbling and endless loads of laundry, this year is flying by. 

Not all of it has been the chaos that we encounter on a daily basis. 

There has been deep, cutting sadness that I am still attempting to deal with. 

The day after Easter I received a text message from a friend on mine asking if I had seen Facebook. I hadn't as I had been attempting to snooze on the sofa trying to recover from hosting a huge gathering for the Holiday. 

After receiving the text I jumped up and ran to my computer to see what was going on and was horrified to read that our friend had passed away at the age of 31. 

Tears sprang from my eyes and cascaded down my cheeks. 

How? How does this happen? 

I sat and prayed for understanding and acceptance but the pain was deep. 

Knowing that I would never talk to Jessie again nearly crippled me. 

Weeks passed and I found myself unable to move on. Not that I thought I should just be able to accept this, toss it aside and go on with my life but that there was an emptiness or hole that I couldn't seem to fill. 

I reached out on the very page that delivered the bad news and asked if there was a way to hold a service for her in Virginia. The pastor of the church that she had attended contacted me and her father and together we picked a date and got to work. 

Phone calls, emails and writing gave my life purpose and direction. I was no longer struggling through a quagmire of numbness that seemed to anchor my feet to the floor. 

I still miss her. I always will but that day I was able to release some of my sadness and say goodbye. 

I wanted to share my eulogy with you to have you know her the way I did.  

I met Jessie in the spring of 2008 at the NRA Annual meeting in Louisville, Kentucky. This sweet, shy, quiet (little did I know) young lady had my heart from the beginning. Always ready with a smile and a funny story she could turn almost any situation into one filled with laughter.

After we began working together I quickly learned that Jessie was neither shy nor quiet and, aside from saying things like Sir, Ma’am, y’all and “Bless her heart” she blew just about every stereotype of a southern girl out of the water. Being from NH I had mistakenly believed that all southern girls were born knowing how to two-step and spent their Saturday nights in bars listening to country music and learning to line dance. 

That was not the case with Jessie…At all. She was a free spirit who was moved by the things that she loved which could include anything from competitive shooting to knitting and if she could combine the two while listening to Ludacris she would! 

Jessie had a wicked sense of humor that ranged from silly to completely sarcastic and had the ability to make me laugh to the point that I’d have tears streaming down my face and my stomach muscles would hurt for days. She was a fierce competitor who gave it her all whether she was competing with a rifle or in the annual Spoons Tournament at the NRA. 

Jess was just amazing! She truly never met a stranger. Her love of others transcended age, race, religion, marital status and politics. She never let her personal opinions get in the way of being a friend. No matter what, she saw the good in people and there was no gap too wide to bridge. 

She had a deep and abiding love of Christ. Jessie was a living example of unconditional love and was always available to help others regardless of their need. Her devotion helped lead me back to church. She never said, “You should go.” Or “you’re going to rot in hell.” She simply lived her life in a way that made me want to emulate her love of others, as Christ loves us. 

So what is this love? Merriam-Webster defines love as: 

·     a feeling of strong or constant affection for a person


·     attraction that includes sexual desire : the strong affection felt by people who have a romantic relationship
 a person you love in a romantic way 

How’s that for not even coming close?! 

When thinking about Jess, the impact she had on me and on those around her the one passage that keeps coming to mind was First Corinthians, Chapter 13: 4-8 The gift of love. 4 Love is patient; love is kind; love is not envious or boastful or arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; 6 it does not rejoice in wrongdoing, but rejoices in the truth. 7 It bears all things, believes all things, hopes all things, endures all things. 8 Love never ends. 

My father’s side of the family is Quaker. In a Quaker funeral everyone sits in silent prayer and then, if they feel moved to do so, can stand and talk about the deceased. At my grandmother’s funeral back in the 90s some people read bible verses and others shared stories. 

As the service neared the end a gentleman, that no one recognized stood up, introduced himself and said that he’d been having breakfast with my grandmother every Sunday after church for the past three years. He went on to say that he was sorry that he’d only known my grandmother for three years but after listening to everyone that day he felt blessed to have known her for three years. 

This is how I feel about my friendship with Jessie. I’d only known Jessie for 8 years but am blessed to have known her for that long. I am very proud to call her friend but I do not believe that our friendship happened by chance. CS Lewis summed up friendship the best in The Four Loves:  “In friendship...we think we have chosen our peers. In reality a few years' difference in the dates of our births, a few more miles between certain houses, the choice of one university instead of another...the accident of a topic being raised or not raised at a first meeting--any of these chances might have kept us apart. But, for a Christian, there are, strictly speaking no chances. A secret master of ceremonies has been at work. Christ, who said to the disciples, "Ye have not chosen me, but I have chosen you," can truly say to every group of Christian friends, "Ye have not chosen one another but I have chosen you for one another." The friendship is not a reward for our discriminating and good taste in finding one another out. It is the instrument by which God reveals to each of us the beauties of others.” 

Jessie’s beauty was Love. 

To know Jessie was simply to know love.  

His Legacy

Three years ago this morning I sat with my hand on my father's shoulder as he took his last raspy breath of life. My mother said it was fitting that I was the last one with him as he was the first one to touch me when I came into this word.

My dad was my buddy and not a day goes by that I don't miss him.

We talked about everything and he was the first person that I would call for anything but especially when had a new joke. Sometimes I would tell him the same ones just because his memory for jokes really sucked! He would laugh the same each time.

I miss his laugh.

He had a great sense of humor and was as quick with a laugh as he was with his temper.

Man, did dad have a temper.

He mellowed in his older years but he was fierce when we were younger.

He could yell louder than any other human on the face of the earth and could get whatever attention was needed, when it was needed. Sometimes you didn't want the attention but when you pissed him off you knew it and sometimes, unfortunately, the entire neighborhood knew it too!

We were raised during the "corporal punishment is ok years." Although we are not an enormously religious family "spare the rod, spoil the child" was certainly a philosophy that was practiced in our house. Dad used to use his fraternity paddle to spank us.

As if being hit with a piece of wood wasn't bad enough, the guilty party would be dispatched to retrieve the "the paddle," an act, I always felt, was akin to sharpening the blade on the guillotine before your own execution!

One morning my brother and I were rough-housing and we broke something - I don't remember exactly what it was - but I was sent to get "the paddle." I crocodile-teared all the way up the stairs into my room where I pulled on every pair of underpants and shorts I owned under my nightgown before proceeding to my dad's closet the get "the paddle" and return downstairs.

When dad hit me it sounded (and felt) like he hit a pillow!

I could cry at the drop of a hat - a skill I developed solely to get my brother in trouble - so I let the tears flow freely while desperately trying not to smile because it didn't hurt AT ALL!!!

I really thought I was "one up" and that the old man was a dunce.

I was 19 before he told me that he knew what I had done but didn't want to say anything! He told me that I was the only one of us three kids that had the guts to even try to get away with such a thing and he wasn't going to take that away from me!

He was a strict disciplinarian but he was also a dedicated husband and father who did whatever it took to provide for his family and be involved in our lives. He was a soccer coach, hockey coach and timer at the swim meets. He knew nothing of soccer and hockey but read every book he could find on the topic to be a good coach - he was that dedicated.

He was at every game we played and every meet we competed in and he had a whistle you could hear over the rest of the crowd and through a bathing cap in the water.

Looking back at my childhood I remember him always being there; didn't matter if it was a school concert or a swim meet my parents were always there.

One of my favorite memories of my elementary years is the Annual Girl Scout Father Daughter Square Dance. I looked forward to that event every year. Dad was my date! We'd get all dressed up and spend the night following the calls to "do-si-do" and "swing your partner." It was heaven! Being on his arm made me feel like the most beautiful girl in the world!

Oh to have that feeling today.

In the past three years, I have had moments where memories come flooding back to me. There are so many things that we did with my dad. When we were very young, summers revolved around swimming lessons at the lake and vacations in Maryland at my grandparent's farm. As we got older, we sailed.

Dad was a sailor at heart.

He loved to be on the water and loved sailing but what he loved the most, was racing. So much so that he founded the Sailing Team at his alma mater Colgate University.

When he wasn't sailing he was fixing. He had an amazing skill with wood and there was always a boat in some stage of repair in our garage.

At some point fixing turned into building.

I don't remember the details but, somehow a guy in Michigan got a hold of my dad, sent him some blueprints for a boat he had designed and next thing I know dad was building the thing.

Now this would be an amazing feat for just about anyone, never mind the guy who had a full-time job, three young kids with crazy sports schedules and a wife at home.

He built a 24' wood and epoxy boat in the garage from blueprints!

I remember watching him pace out the garage to see if it would fit and watched him literally jump with excitement when he realized that it would.

In order to build this thing, it had to be constructed upside down. Once the hull was ready it had to be flipped over so he could build the deck. I can still see the scene in my mind today of all of the mattresses in the driveway and a huge number of people helping to roll this thing over. There might have been a keg involved but I'm not sure.

Our friends and neighbors must have thought we were insane.

In the middle of construction dad was transferred from north Jersey to south Jersey. In addition to moving us and the contents of the house, we had to move the boat! Next thing I know dad was modifying a trailer to tow this thing south.

I know that for a while he rented space in some sort of business complex but eventually moved the boat to my grandmother's carriage house. Once it was finished he launched the boat in Island Heights, NJ and christened it GARDYLOO.

The '80s were spent on the water in Island Heights, New Jersey. Some of my greatest memories are from those summers. He wasn't just my dad, he took on a fatherly role with everyone younger than he was. He didn't do this consciously, it was his nature. He was wise if you were willing to listen - I was a teenager in the '80s so I often argued more than I listened - but he was always willing to offer some tidbit of wisdom.

A few weeks before he passed away he told me that one thing he would really like to do was to go sailing again. I knew that I had to find a way to make this wish come true.

I called a friend and found out that his brother's boat was still in the water and that they'd be more than happy to make this happen. Before I knew it we had assembled the old crew from Island Heights, including one of the guys that was now a surgeon living in Florida, and headed for a sail.

Unfortunately a key crew member was unable to make it: my brother was stuck at a conference in California and couldn't get back. We arranged for my dad to talk to him on the phone while we were sailing. It certainly wasn't the same but at least they got to talk. We also had two additions to the crew that day. My husband, my dad introduced the two of us, and his oldest grandson who my dad had also taught to sail and was dad's right arm at the Sailing School.

The fact that we were able to assemble everyone on such short notice was nothing shy of a miracle but the day itself was truly touched by God.

It was mid November in Maryland and it was nearly 70 degrees. The sun was shining and there was a light wind blowing. An hour north in Philadelphia that same day and same time, there was sleet and snow!

It took some maneuvering but we finally managed to get dad loaded onto the boat and headed out from the dock. When it was time to set the sails each of the crew members jumped to action as if no time at all had passed since we last crewed together despite the fact that it had been more than 20 years!

It was magical.

Dad was settled in the cockpit and we took turns sitting next to him to keep him from falling over each time we were on starboard tack. We also took turns imitating him and spouting his Chuck-isms. He no longer had the strength or desire to yell at us but he certainly got a kick out of our impersonations.

We sailed for a little more than an hour before dad said that he was tired.

It was time to turn around.

The return trip might have been sunny, but my mood was beginning to cloud over. I stayed by my dad's side as much as possible as I knew that this would be the last time I would sail with him and I didn't want it to end.

In the years since my dad has passed I do not look at, or think about, a sailboat without missing him.

All I have to do is be near the water with wind in my hair and my dad comes to life.

He loved sailing so much that when he retired he joined a yacht club and started the Rock Hall Yacht Club Sailing School that thrives today. Two of his grandchildren as well as a few of the kids from his inaugural class have become sailing instructors.

His legacy lives on. The children who were once students, will one day teach our boys.

We just celebrated the twins' first birthday. I have thought of my dad countless times this past year and am saddened by the fact that they will never know him. They will however, learn to sail and when the wind blows through their hair and the sun kisses their cheeks, they will feel his touch and know his love.