Birthday milestones

The boys had their birthdays this weekend, turning 13 and 10. One is becoming a teenager, and the other is entering double digits. A significant birthday for each of them.

It is significant for me too. I am keenly aware that I was diagnosed shortly after they turned 4 and 1 years old. I am in grateful awe that I am here to witness their growth and to share in these milestones. I honestly didn’t believe that I would make it this far, and that in itself is a miracle.

I am also grateful that this birthday for them is BEFORE I get the results of my CT scan on Tuesday. I can (try to) fully enjoy the day before dealing with whatever the CT scan may force me to deal with.

The doctors, I believe, anticipate growth. I wouldn’t be surprised at that news, based on some recent changes in my body. I can physically feel the growth of one of the tumors, I have pain more frequently and in new spots, and some lymph nodes are newly enlarged. None of those are good signs, though there is always a chance that things are “basically stable.”

Nevertheless, at my last appointment, for the first time, the doctors presented new chemo options for me to consider during these two weeks. This is so that, should the CT scan show growth, I will have had some time to mull the options and can make an on-the-spot decision about where to go next.

My two choices are FOLFOX (which includes a drug that gives neuropathy – I’ve had that before and it is not easy to live with) and Erbitux (which results in a “disfiguring” facial rash – also lovely). While I am grateful to have options, you have to admit that this is a difficult choice.

So I am hoping for stability and the ability to stick with the “devil I know.” In the meantime, I will celebrate the boys’ birthdays with a gratitude that I can!

Please send good vibes, as I send them straight back to you!

Love,
Marie

Climbing aboard the party train

Our nine-year-old wanted a birthday party. Normally a reasonable request (though, one would think he wouldn’t have to request it), but to me, a commitment to serve dinner to my family can feel like pressure. A party????

Again, though, he is nine, so I told him that I could do a small party, maybe 2-3 friends. It wasn’t his vision – he wanted a big blowout that included all his classmates plus some other friends – but he happily shifted gears and thought hard about who to invite. If he could have only 2-3 friends, who would they be?

We came up with a theme, venue and activities, and I ordered coordinated little toys, erasers, candy, etc. for the goody bags. I figured that was all I needed to do in advance, and entered my chemo week.

When I emerged from chemo to take care of the final details, I discovered that the themed goody bag stuff would only arrive AFTER the party. We weren’t sure how to get pizza delivered to the venue, and we had to somehow decorate the place before the party. Oh and buy decorations. The thoughts alone were overwhelming.

I first did what I do when overwhelmed: I made lists. I listed what needed to be done to pull the party together, what we needed to buy, what we needed to bring to the venue and when.

My next go-to when I am feeling overwhelmed: Turn to friends to help me maintain perspective. Facebook friends generously shared suggestions for where I could shop for all this stuff in person and made it feel manageable. One even offered to do it for me. (Thank you, all!!!)

And finally, I act. Although I normally rest after chemo, we all trekked to the closest recommended party store, where I sat and directed while the boys toured the store looking for the items on my list.

They veered from the mission at times,

Masks in Party City

but we did end up with a treasure trove of items with which we could decorate the room and fill the goody bags.

Then, I was spent. I did nothing but rest for the next 24 hours.

Undaunted, our nine-year-old assembled the goody bags for his friends, thoughtfully choosing matching colors of candy and little toys so the bags would look good, and he carefully placed the finished products in a safe place.

The next day, he went with his father to decorate the venue. They hung a Happy Birthday banner on the wall and laid a tablecloth and confetti on the table. On the way home, they picked up the cake, which he selected. Back at home, he found birthday candles in the drawer, counted out nine, and placed them aside.

While I watched him do all this, I felt horrible that I could not throw a simple birthday party for him. Not only that, while he was counting the hours until his party with great excitement, I was counting the hours with dread. Would I have the energy? How would I do it? I can’t even go out to dinner. How would I last through a multi-hour party, with children?

Tonight, when I put our son to bed, he was giddy with excitement for his big day. It was that little kid kind of excitement: pure, bubbly, trusting that it will all be great. And I finally noticed: I was focused on my expectations – that I could throw a party that he wanted, that doing all the work would be my gift to him. He didn’t mind that the party wasn’t a big shindig. He didn’t mind doing the work. His friends were coming to celebrate his birthday, everything was ready, and he felt special. He would have his very favorite, carefully chosen people around him, and it would be wonderful.

I’m climbing aboard his party train, and grateful that I can do what he needs of me, which is to be present.

Party on, with love,
Marie

Birthday gifts

“There are so many gifts still unopened from your birthday.” –Hafiz

Last Thursday, I had my CT scan and I get the results on Tuesday. Of course, the CT scans trigger anxiety but I was fortunate to be distracted by fun life events.

On Tuesday, before the scan, my husband and I attended the Elton John concert. I loved Elton John for as long I can remember. When I was younger, I would lay on my bed and listen repeatedly to his albums, memorizing every lyric. I learned the names of the band members. My best friend and I made up dances to his songs.

At the time, I couldn’t afford concert tickets (and I’m sure my parents would not have let me go anyway), so I was thrilled, a few years ago, to attend my first Elton concert. And then, he returned this week so I GOT TO GO AGAIN! Knowing that I haven’t done something for the last time always gets me excited.

The concert itself was fabulous. He opened with Funeral for a Friend / Love Lies Bleeding. Funeral for a Friend used to creep me out (mostly because of the name) but now I get lost in the music. From there, we were dancing and singing (still without a voice, but getting better) and taking it all in, for the entire 2 hours and 45 minutes of his nonstop playing. I remembered all the words and recognized the original band members onstage. (They got older for sure but still fabulous.)

It seemed that the other 10,000 people in the stadium enjoyed it just as much as I did. And as he thanked us, I realized that he gets to share his gift, which he clearly enjoys doing, and 10,000 people were happier as a result. Win win.

It made me look anew at all the gifts that you share daily with me and my family – the gifts of who you are and how you move about in this world – your humor and perspective and music and love, among others – and how much happier we are as a result. I hope that it also makes you happier, and that you continue to open more and more of the gifts that you were born with and get to share with the world.

Much love,
Marie

Sun is shinin’ in the sky

As a birthday gift, my friend took me rowing on the Charles River.

With Lisa at CBC before rowing on May 27, 2013

That’s my friend on the left, emanating light.
I am on the right in the bright green jacket.

The previous days had been cold and rainy as though spring would never come. But then this morning, the warm sun was shining in a beautiful, clear blue sky.

Feeling incredibly happy about the new number on my body’s odometer, I rowed toward the city. The song Mr. Blue Sky by Electric Light Orchestra played over and over in my mind.

The bouncy tune and upbeat lyrics vibrated through my cells, especially the words at the beginning and, to a lesser extent, in the chorus.

I hope you are seeing blue skies today and if not, please remember them and know that they will return.

Love and light,
Marie

Click on this to watch a youtube video version of ELO singing Mr. Blue Sky and dig on the cool hair.

Lyrics to Mr. Blue Sky by ELO

(Morning, today’s forecast calls for blue skies)
Sun is shinin’ in the sky
There ain’t a cloud in sight, it’s stopped rainin’
Everybody’s in their play and don’t you know
It’s a beautiful new day, hey hey hey

Runnin’ down the avenue (pant, pant, pant)
See how the sun shines brightly in the city
On the streets where once was pity
Mr. Blue Sky is living here today, hey, hey, hey

CHORUS

Mr. Blue Sky, please tell us why
You had to hide away
For so long (so long) where did we go wrong?

[Repeat]

Hey, you with the pretty face
Welcome to the human race, a celebration
Mr. Blue Sky’s up there waitin’, and today
Is the day we’ve waited for, oh, oh, oh

CHORUS

Hey, there Mr. Blue
We’re so pleased to be with you
Look around see what you do
Everybody smiles at you

[Repeat]

Mr. Blue Sky,
Blue Sky, Blue Sky
Mr. Blue Sky

Mr. Blue, you did it right
But soon comes Mr. Night, creepin’ over
Now his hand is on your shoulder
Never mind, I’ll remember you this…
I’ll remember you this way

CHORUS

Hey there, Mr. Blue (sky)
We’re so pleased to be with you (sky)
Look around see what you do (blue)
Everybody smiles at you