Why I Hate Driving

There is the usual list of grievances: gas prices, traffic, that blasted “check engine” light.  (Dave’s just came on again.  UGH.)  Those are all annoyances that can be stressful, but the real reason I hate driving is because I can’t escape from my thoughts when I am in the car.  I think and over think when I am driving.  I don’t even have to be alone.  The kids can be nattering all around me, but I am lost in my head.

Today’s thoughts centered around Dave’s appointment this morning.  True confession – I don’t attend all of his appointments with him.  I go to all the biggies but for the routine ones I tend to bow out.  Dave prefers it this way.  He worries that he is wasting my time by having me sit there with him and that makes him anxious.  So, to keep the peace, I go when I am needed.

This morning was a routine appointment.  His blood work was good.  There is a tumor marker (CEA) that can indicate when something is amiss.  This is the number that had elevated some and was the reason Dave had the scan in April which revealed new tumors.  Dr. Spira has told us that it is not a great test, but it is another way to keep an eye on things.  Today’s CEA was back to normal.  Great test of not, this news feels celebration worthy.

Dave told me that he asked how long this cycle of chemo would be.  He was told it could be indefinite.  My heart sank when he told me this because I had already figured that out but was trying to protect him.  Chemo is grueling no matter what, and I didn’t want Dave to have to think about it going on forever.  When we went to Hopkins they told us that stable disease would be a good thing.  That Dave’s cancer was aggressive.  So it makes sense that as long as the chemo is keeping the cancer under control that they are going to keep giving it to him.  I worry about how disheartening this kind of news can be.

Since I have been in the car a lot today, I’ve had plenty of time to refocus my thinking.  I hope that I can keep Dave in this mindset too – that as long as the chemo is working, the cancer is not growing or may even be shrinking.  There are new trials and ongoing trials which means more opportunities for him.

I know that I will be continuing to call on our village for help during those times when all of this seems frustrating or demoralizing.  Distractions are welcome!

Unexpected

We have experienced many acts of kindness in the last year.  The support and love we have been shown has been staggering, and I believe that my definition of gratitude has been rewritten.  There have been some completely unexpected acts that have gone so far above and beyond.

*Dave’s school formed a team in his honor to raise money and run/walk in the www.getyourrearingear.com fundraiser.  Team Orange was the biggest group represented and raised the most amount of money for the event.  When my school principal heard about it, she told a few people. Five amazing ladies, (Ginger, Kim, Jaime, Maggie and Stephanie) whom I barely knew, joined the event in honor of Dave and also Maggie’s grandmother.  They even made t-shirts for the occasion!  We were joined on the 5K by our dear friends the Lambakis family, my parents, Dave’s sister and her boys, the Hayfield Hawk and the many members of Team Orange.  Inspired by the Alexandria event, my cousins (Suanne, Mimi and Lynne) participated in the Austin event.  Amazing how one good deed inspires others.

*We have been friends with Doug and Lexy for many, many years.   Our families have shared some tough times together but also TONS of laughs.  Recently they were heading to Reston to participate in a March of Dimes event and asked if they could stop by.  They dropped off yummy meals for days that we could freeze and use over time.  What a godsend on those days when we were all so tired that cooking was the last thing on our minds, to have delicious homemade meals that we could heat up and enjoy.

*My friend, Raba, who also joined us on the 5K with her son, Joseph, messaged me one day and asked if we would be home at 5:00.  A little after 5:00, I looked out the door to see if she was there, and I discovered a full homemade meal sitting on my front step.  Raba is the kind of person I strive to be.  She would literally give you the shirt off of her back.

These unexpected acts have brought light to some shadowy days.  We have been energized by the love and thoughtfulness of our friends and family.  Thank you all for being part of our village.

Oh, and remember those orange suits?  Multiple boxes arrived on our door step over several days.  A friend of Dave’s had the suits made for him.  Incredible.

xoxo

Robyn

Because There is More to Life

It has been a busy but rewarding week around the Tremaine residence.  We are slowly adjusting to life with a puppy in the house.  Cupcake has stopped looking at me like “Why did you do this to me?” and started to play with and enjoy Winston.  There WAS an incident on Tuesday during a walk when someone accidentally peed on someone else’s head, but Winston doesn’t want to talk about it.  On a happier note, he is becoming somewhat of a celebrity around the court.  Our cute-as- can-be neighbor, Jack, requested that his birthday cake have a train AND Winston on it.  And his awesome mom honored his request.  Can’t wait to see pictures of the cake on which Winston is driving the train.

Parker treated us all to a yummy dinner on Wednesday.  She poured over cookbooks all afternoon and made her shopping list.  Then I took her to the store to get ingredients and helped her with the less fun jobs like cutting up the raw chicken.  We all declared her meal a big success – you can’t really go wrong with fruit dipped in chocolate!

I also have big news this week.  I accepted a new job.  I am going to be a part-time resource teacher in my school’s STEM (science, technology, engineering, math) lab.  I could not have dreamed up a more perfect job, and I am so thankful to my friend and boss, Ann, for thinking that I would be the right person for this opportunity.

To quote a line from one of my favorite movies, “My cup runneth over.”

xoxo

Robyn

The Kids Are All Right

The most common question we get after all Dave’s particulars have been shared is “How are the kids doing?”  Amazingly, they are doing just fine.  I think they are doing so well because the dad they know and love hasn’t really changed in their eyes.  He is still active in all their events.  He is still working full time, exercising, gardening with Parker, wrestling with Grant.  He still cracks the same goofy/crude/odd jokes.

It was hard to decide what to tell them.  In fact, in this whole process, it was the one thing on which we didn’t completely agree.   I am of the school that you tell them everything (within reason, of course) because I want them to trust that what we are telling them is the truth.  Dave wants to protect them from anything and everything.  If there is one single thing that he is angry about, it is that the kids have to go through this.  He has said it repeatedly.  He is not worried about what might happen to him, but he absolutely hates that the kids have to deal with this.  He is a good, loving, protective dad.

So, in the end, we told them each what they could handle.  With Parker, we didn’t use the word cancer since her pet rats died of cancer.  Before Dave’s first surgery, we talked to Samantha and Grant separately from Parker and explained the game plan.  That Dave would have surgery to remove the colon tumor, chemotherapy, more surgery to remove the liver tumors and then finish up chemotherapy.  Grant accepted the entire conversation at face value – Dad said everything was going to be okay, so it is.  Samantha took it a little harder.  She asked me if Dave would lose his job.  She asked me if he was for sure going to be okay.  The first question was so much easier to answer than the second one.  I told her that he wouldn’t lose his job.  That he could take some time off, if he needed to, and they would still let him come back.  And I told her that nothing is ever “for sure” but that we were going to do everything the doctors said to do to help him get better.  And she accepted that.  We all did.

And everything went according to plan.  Except shortly after stopping chemo, there were more tumors in new locations.  So for a while we didn’t say anything.  We decided it was best to have a plan before we said anything to the kids.  We didn’t know if Dave would be having surgery, radiation, chemo or some combination.  We haven’t used scary words like recurrence.  The kids know that the first round of treatments didn’t get rid of everything so that Dave is back on chemotherapy.  There is not much more to say because we don’t really know more than that.

The only time they have been forced to think about any limitations that Dave might have was when we went to Disney World.  I talked to each of them and reminded them that Dad was likely to be tired since he was having a treatment right before we left.  I asked them to think about what they most wanted to do when we were there because chances were we wouldn’t be able to do everything.  They were amazing.  I took them swimming the first night we were there, while Dave rested in the room, and they planned out the whole week.  They didn’t argue.  They compromised.  It was important to Samantha that we stay together as a family and not split up into groups.  I don’t think that I have ever been more proud of them.  They are incredible, kind, smart, loving people.

xoxo

Robyn

Orange

See that photo above?  Those are suits.  No.  Really.  Dave’s school colors are orange and white, and he wears them proudly and often.  He has shoes, socks, ties, shirts, tees, polos, jackets and now two suits.  His closet is arranged by “orange” and “all other colors”.  His dresser is chock-full of shirts that represent the many groups, teams and clubs at his school.  Dave is so proud to be a part of Hayfield Secondary and has worked hard to try to cultivate that same sense of pride in his students, faculty and staff.  So, the next time you wear something that has the color orange, think of Dave, and maybe send a little prayer or good thought his way.

xoxo

Robyn

PS We also have an abundance of orange umbrellas, mugs, notebooks, caps, lunch bags etc. that populate our house.  Oh, and a bathroom painted Hayfield orange.

I am a rock. I am an island.

Some days are naturally harder than others.  Dave was tired and cranky today, and so was I.  I guess I was feeling sorry for myself which made room for Fear, Melancholy, Worry, and even Envy to rear their ugly heads.  Luckily, it was short lived and I got over myself and enjoyed a very fun evening with the kids at the end of year swim team party.

Dave was tired because he probably did way too much this weekend.  He volunteered at the swim meet, played tennis, and then attended a dinner event with old friends all while trying to bounce back from his latest infusion.  As you can see, this cancer thing is not slowing him down much.

Some days I am a rock, and other days I feel more like an island.  On those lonely island days, I bow my head or raise my face up and list all of the blessings in my life and give thanks.  And it always makes me feel better.

xoxo

Robyn

Because There is More to Life

This is my favorite souvenir from Disney and probably the most affordable item in the huge World of Disney store.  The placemats add a fun pop of color to the table.

And because we obviously have nothing but time on our hands, we thought it would be a good idea to add this little guy to the family.  Actually, he is not little at all.  Apparently we picked out the Goliath of basset hounds.  He is a total love though and is not really allowed on the couch.  We have named him Winston but everyone is calling him Winnie or Winnie Pig.

Hope that you all have a wonderful weekend.  We will be waterlogged with a swim meet and two pool parties.

xoxo

Robyn

The Fanny Pack

Dave had his six hour visit to the infusion lab today, and all went smoothly thanks to the amazing nursing staff there.  Now for the next two days he wears the lovely fanny pack (as modeled above)!  The pack holds a small pump which has plastic tubing attached.  The other end of the tubing connects to a port near Dave’s collar bone.  The port shows only slightly under his skin.  It really is remarkable.

We like to make jokes about how cool and attractive the fanny pack is.  He wore it when we went to see Magic Mike so you can imagine the zingers were flying.  He wore it when he met Michelle Obama and the cast of iCarly.  He felt a little self conscious wearing his fanny pack with his suit when meeting the first lady, but I imagine that public figures must see it all and take it in stride.

The pump makes a click and a whirring sound as the 5FU is administered.  I find the sound both reassuring and stress inducing.  I am comforted by knowing that the chemo drugs are going in there to battle the cancer cells, but it also can leave me breathless when I think about why they are needed in the first place.  So for those two nights every other week, Dave sleeps while combating his myriad side effects, and I lie next to him listening and thinking too much.  But I stay there next to him.  Not because I am some super dedicated self-sacrificing wife, but because if I get up in the middle of the night, I might order the pedi egg or the slanket or maybe those shimmer glitter tattoos….

xoxo

Robyn

Cancer for Dummies

We have been at this cancer thing for almost a year now.  As we have traveled along the twisty path, I have formulated a sort of Cancer for Dummies book in my head.  Perhaps a more apt name would be Cancer for the Previously Unaffected.  Ideas usually pop in to my brain when I am alone in the car, and I spend the remainder of the drive pondering them.  There is the list of “Things I Wish People Wouldn’t Do or Say” and the other list of “Things I am SO Glad that People Did or Said”.  When I think back on my own actions, I have probably done or said all of the things on the first list and done or said precious few on the second.  Now I know.  Perspective is a powerful thing.

My least favorite question when people find out about Dave’s cancer is “Did they catch it early?”  Because the thing is they didn’t.  Once this question is floating out there, I begin to feel uncomfortable because I know I am about to make someone else uncomfortable.  So I give a brief response along the lines of “Unfortunately they didn’t.  It had already metastasized to his liver when they found it.”  Then there is an awkward silence followed by me feeling the need to explain about risk factors and routine screening and why Dave hadn’t been screened earlier.  Suddenly I am the living blathering wikipedia of colon cancer information encouraging you to get a colonoscopy when you mention your family history.  And I mean it.  Have you had one?  You should.

xoxo

Robyn

Speaking of Gratitude….

A big thank you to everyone for checking in on us here.  We so appreciate reading your comments and emails even if I haven’t been great about responding to all of them.  Just know that we have read every word and been buoyed by the incredible love and support.

Dave goes in for labs tomorrow and then does his 48 hours of chemo Wednesday through Friday.  So any prayers, good vibes, and positive thoughts that you want to send our way, we’ll take them!!

xoxo

Robyn