An Unexpected Date Night

Sometimes, it's the smallest of victories that matter the most...

Todd hadn't joined me in New York City since that dreaded night a few months ago when we left our apartment in such a frenzy and rushed to the Emergency Room at UPENN. You can imagine my surprise - and delight - when Todd accepted my offer to spend the day with me in New York this week.

I met him at our apartment after work thinking that we'd just get back in the car and head home to New Jersey. Instead, Todd told me that he felt great and that we should go out for dinner....

As many of you know, Todd can no longer eat. To receive calories and nutrients, Todd is using TPN (Total Parenteral Nutrition). So, the thought of going out for dinner together - in New York, no less - was something I never really imagined we'd be able to do again.

Yet there we were.  A totally normal, married couple on a lovely date at Momofuku - our battle wounds and scars hidden for the moment.

Even better than Todd's company, even better than my favorite ginger scallion noodle bowl, was Todd's outlook.

Instead of being a grump and complaining about not being able to eat (which he would have absolutely every right to do), Todd came up with a brilliant solution for our date nights. Rather than sit there without food in front of him, Todd would order a decoy meal which I could then take home for lunch the next day. Of course, this new plan works out really well for me (and my belly) but the smile on Todd's face told me that it works really well for him too.

Todd started Round 3 of chemo today with a little more pep in his step. Maybe from our date night? I'd like to think so. Either way, he's feeling better than he's felt in a long time.

The Soundtrack

This song by National captured the mood in our house last week. It's still a work in progress. 

Game On

In the words of Wayne Campbell, "Game On!"

I feel like the past week has been a summation of everything Todd and I have gone through since 2004. We have faced more hurdles and challenges in just one week than we have over the course of six years.

Some of the not-so-high highlights:

• Waiting over two hours at a pharmacy to get morphine lollipops for my husband so his pain level could subside for a bit
• Reading Todd's text as he sat for 8 hours during his chemo treatment: "If there's a hell, this brown recliner would be it."
• Watching Todd's face when the doctor told him: "You will be on chemo indefinitely - probably for the rest of your life."
• Reviewing my notes from our follow-up visit with UPENN. Although the page was a bit tear stained and my writing a bit scribbley, I could still make out the phrase:  "At this point we have no other options..." 
• Lugging 45 pounds of Todd's TPN (feeding tube nutrition which must be refrigerated) to a friend's house down the block during a power outage
• Weighing Todd in at 119 pounds (-23 pounds since the June 28th surgery date) 

Despite it all, we've managed to hit some goals and high points as well:

Todd began his chemotherapy this past Tuesday which means that, finally, he is actively fighting this thing.  I bought him a new, totally awesome bike which he has been able to take out for a spin or two to get the body moving and the mind refreshed. And, in typical Gov style, Todd went on his first 2 mile jog yesterday. Pretty amazing.

For those  of you that don't really know our situation, I work in Manhattan and sometimes have to stay in the city during the week due to my two hour commute. On the nights I have to be in NYC, it is extremely difficult and painful to be away from Todd and our black lab, King. I try to pass the time much in the same way that Todd tries to pass his time while he is on chemo. I count the days, the hours, the minutes until I will get back to our home at the beach where the ocean helps carry some of the burden.

So, a few nights ago, I went into Strand Bookstore right near our apartment.  At the checkout line, a fridge magnet with a powerful quote by Winston Churchill caught my eye:

In my eagerness to get home and slap it on our fridge, I realized that I found our new mantra which we will repeat over and over in our heads until we have beaten this thing once and for all: "Never, never, never give up."

Todd's chemo schedule is the same as it has always been except the drugs are more intense and heavy hitting. He has 3 days of continuous chemo followed by an 11 day break. It's a beautiful morning  - the first of my one week vacation. We're off to watch the sunrise together at the beach with King.

Thank you again for all of your support and encouragement. We feel infinitely better knowing that we have you in our corner.

We'll be in touch again soon.

Love,
Amanda

"We cannot adjust the winds but we can adjust our sails."

July 18th 2010
Today marks the 6th anniversary of Todd's initial diagnosis. It's a day filled with mixed emotions. On one hand, we are celebrating life and the fact that Todd has defied some serious odds.
On the other hand, we are disappointed with the news we received from Memorial Sloan Kettering. As mentioned in the previous blog, we were waiting to hear from an oncologist at Memorial Sloan Kettering as to which treatment plan would be best for Todd. Patiently and anxiously, we were hanging in the balance and hoping for an answer - or at least some direction.
So, what do you do when the person you've relied on for hope and guidance explains that there is not much he can do? Well, as my dad and Todd said this morning over breakfast, "You adapt. You overcome. You improvise."  Therefore, we'll continue exploring all treatment options and we will rely on all of our resources to find the best treatment plan and medical team for Todd.
For now, we'll remember that six years ago today, an oncologist told us that Todd only had six months - at best - two years to live. We've defied the odds before and we can do it again.
Love,
Amanda

Pre-Season Training

After an extremely long and frustrating week, we finally have a short term game plan in place. Todd is still in the hospital at UPENN and will most likely be able to come home this Friday. Once home and recovered from the surgeries, our focus over the next 3 weeks will be to get Todd back to his fighting weight and help him physically and mentally prepare for his upcoming chemotherapy treatments.
Our oncology team at UPENN in combination with a research team at Memorial Sloan Kettering is currently investigating which type of chemotherapy will be best for Todd's case. The good news is that over the past six years, we have kept some heavy hitting chemotherapy in our back pockets as reserve.  Our team is exploring all options and, hopefully, over the next few weeks, we will have a treatment plan in place.
Although we are in somewhat of a holding pattern at the moment, we still have key goals to focus on: weight gain, exercise, and mental strength.
I suppose if Todd were back at Taft or Colby, this would be considered the most intense pre-season training he has ever gone through. Hopefully, I can be as good of a captain as he was.
Luckily and thankfully, we have the most amazing family and friends to help get us through these dark days with encouragement, support, smiles, and friendship. As a friend of mine recently wrote, we have an army of people behind us and, believe me, we can definitely feel your love and support.
I'll be in touch soon once Todd is settled at home and we have a chemo plan in action.
Love,
Amanda

Back in the ring

As many of you know, Todd is recovering at UPENN Hospital from an intense surgery he underwent on Monday. For the past 3 months (during his break from chemotherapy), Todd has been suffering from severe stomach pains and Monday's surgery was to determine the cause of the pain.

I wish more than anything else in the world that I had better news to share with you all. I don't. Very unfortunately and sadly, Todd's cancer came back to his abdominal cavity quite severely. The surgeon couldn't remove the tumors as they were too numerous and too adhered to the abdominal walls. He stopped the surgery and came out to tell me the news. Thankfully, I had my dad with me to lend a second pair of ears.

I am still trying to process everything and will write a more detailed update soon. For now, Todd is going to focus the next few days on recovering in the hospital and healing himself from the surgery. I am going to quarterback this thing as best I can and I have several meetings scheduled with oncologists on Friday to come up with a game plan.

Back in 2004, shortly after Todd's initial diagnosis, he asked me "What's the positive that's going to come out of all of this?" I was blown away by his mental strength. Now, six years later, post-surgery by only a few hours and still not fully able to comprehend the news, Todd told me that he's been training hard these past few years to get his body and mind ready and trained to fight whatever obstacles come his way.

Although the road we're about to go down will be difficult and present many hurdles, I can tell you all now that Todd and I plan to fight like hell to do whatever it takes to beat the odds once again.

Thank you all so much for your prayers, thoughts, and wishes. Even though I am not responding, I want you to know that your calls, texts, e-mails, and messages are very much appreciated.

Love,
Amanda

Running Season 2010

Okay, so I must confess that I am not totally in love with running. I’m not even sure if I even like running. But, I run because of Todd. I run because on the days when Todd isn’t feeling well enough to get off of the couch it’s my job, as his caretaker, to shake things up a bit and impose my strong will on him.

Sometimes our runs are real runs. Like today – it’s finally a nice day and we just got back from a great run together. Then there are the days when our runs are really more like short jogs or laps around a hospital floor. No matter the distance or the pace, at least we get up and out there.

On my run with Todd today, I thought of all the runs we did as a couple and all the runs we did as part of Team Seas It.  The memories from each race, the smiles on our friends’ faces, and the pride I felt each time I saw Todd cross the finish line inspired the following video and made me really excited about our 2010 Seas It Running Season: 
http://www.youtube.com/watch?v=77-svmgCqeA

The King and I

This is our dog. His name is Kingsley and today he watched the sunrise with me. 

It was his first walk in four days.  King has been stuck in the house waiting patiently for the sound of his leash and collar coming together.  The jingling sound lets him know that a walk or something equally exciting is about to happen. 

King’s routine this week became an opening of the back door, a few sniffs, a quick relief, and then back to the door to wait for me to let him in. Despite my slow response, he shows no anger towards me and simply follows me back to the couch and curls up next to me.  For the four days when my chemo side effects really zap my energy, we switch our positions from couch to bed – from bed to couch.  Kingsley does not leave my side the entire time nor does he ask me to play or pet him.  He has come to know my chemotherapy cycles and seems to be aware of my discomforts.  He knows when I need to rest and, somehow, he knows when the side effects are over.

Chemotherapy round 69 began on Monday and ended on Wednesday at 1:00pm.  It was a tough round of side effects that made me nauseous, irritable, angry, and unmotivated.  Even though I was disconnected on Wednesday, the side effects lingered late into Thursday evening.  I began dreading waking up on the fifth day to feel the same way.  But this morning was different.  Instead of a curled up Kingsley waiting for me to wake up, I was greeted by a playful paw, a wagging tail, and a bouncing trot. As I left the bed, I noticed that my headache was gone, my face was no longer flushed and burning, and the chemical taste was out of my mouth.  Water tasted like water again and my appetite had finally returned.  This morning, for the first time all week, King finally heard the sound he had been patiently waiting for – his collar and leash jingling together.

It was 5:45am and we were out the door.  King and I had enough of lying around and it was time to get going and make up for the lost days.  We both wanted to make the most of today because in ten days chemotherapy round number 70 will begin and King and I will go back to our routine of shifting from couch to bed – bed to couch….

Waiting in the Balance

The Scale:

"Wait for the double zero before stepping on” says one of my nurses.

I only have to wait one second but, in that short period of time, my mind races with the potential outcomes: Do I weigh the same, weigh more, or weigh less? 

 This scale, harmless to most, is the benchmark of my success, failures, and efforts.   It tells me if I am living or if I am dying.    

Before treatments, cancer patients have their blood drawn to make sure their "counts” are good.  However, in my case, the blood work results that the doctor reads are from the previous week.  It’s an “after the fact” gauge of my health because two weeks have already passed by the time I hear the results. So, I don’t really get much mental satisfaction from this bi-weekly routine. 

The scale, however, represents a “real time” display of my current physical condition and doesn’t sugar coat anything or stretch the truth.

Throughout my treatments, I have come to fear the condition of "Wasting" the most.  It usually happens after an intense treatment cycle and leaves my face looking gaunt, tired, and lifeless. Sometimes, I can hardly recognize the person I see in the mirror…Out of kindness, my friends and relatives will tell me I look good when they see me at my worst moments.  But, I prefer trusting the scale as a measure of how my body is handling the treatments. 

 "Wait for the double zero,” the nurse says and my heart begins to race.  I think about how hard it has been to sneak in a few extra calories each day.  For the past six years, I have been forcing myself to drink multiple Ensures each day even though the heaviness of its calories sink like a stone in my stomach and  make me feel nauseous.  I think about how I forced an extra forkful of mashed potatoes in my mouth yesterday hoping that would add a few calories to my meal.  I think about how difficult it was to get off the couch this week and walk around the block and do the few pushups I was able to do. Will the exercise add any muscle mass and maybe some extra weight?

"Mr. McGovern, you can step on the scale.” With a deep breath I step on and mutter under my breath to the scale: Come on, you son of a bitch, I will beat you!"

Just one quick second later, I get the result:  144.6 lbs.  Those .6 lbs mean everything to me.  I am .6 lbs heavier than I was two weeks ago!  My efforts have paid off.

The scale has become a symbol of my battle against cancer.  .6 lbs might seem insignificant to someone else, however, in this battle filled with challenges and setbacks, it is a small victory for me.  When added up, all of the small victories that I have been stockpiling help maintain my mental fortitude and allow me to continue the fight.  

Seas It means living

The mission of Seas It, in its purest form, sparks the question: “Do you want to live a little each day or die a little each day?” 

This question was raised at a time when Amanda and I were both at a physical and mental low point of cancer treatments.  My body was wasting away from multiple surgeries and ongoing chemotherapy.  My mind was starting to believe that, perhaps, the doctors and their statistics were correct and that I would only live for about 6 months – at best two years.  Amanda was exhausted.  She put her career aside and for months being my caretaker became her full time job.   She fielded every inquiry from insurers and employers, arranged every medical appointment, and oversaw all the travel logistics.  Her reward for a job well done was to sneak a few hours of rest by falling asleep in hospital chairs.  Amanda went from newlywed to nurse in just days.   We did the best we could in our new roles but neither one of us felt like we had any control in the process.

From the moment I was diagnosed with cancer we surrendered ourselves to the medical community.  Our time and my body became their property.  We traveled the Northeast for consultations, opinions, tests, and treatments.  We made ourselves available to their schedules and waited (and waited and waited) in countless rooms so that my body could be poked, prodded, injected, cut, stapled, and radiated.  I felt like my life was in chaos and was spinning out of control.  Then, Amanda convinced me to try acupuncture – we were desperate to attack this disease from every angle. Lying on the bed, while my acupuncturist stuck her needles in me, she told me that I could either “live a little each day or die a little each day”. She asked me, “Which one do you want to do?”

Her question had such a profound impact on Amanda and me.  For the first time since the diagnosis, we felt like we had some control.  From that day on, we have decided to live a little each day.  By choosing to live rather than die, to fight rather than surrender, our fears and anxieties disappeared and were replaced with the determination and motivation to move forward.

Today is better then yesterday. Tomorrow??