It's a creekmore world

Week # 6: The importance of a grilled cheese and help from unexpected places

After the fantastic high of cancerpalooza, the second round of chemotherapy treatment is harsh.

Our littlest daughter, Lily, shows  unexpected courage, and we get precious, surprise help from friends, school and family.

Best of all, Trish does much better this week.  We’re optimsitic that we can manage the symptoms the rest of the summer.

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Chemo Treatment 2

Cancer fashionista.  I love this chick!
Trish looks smashing at the chemo appointment. The nurses now look forward to her visit, and expect to see a new shoe each time.

The IV goes in the port smoothly, and she sleeps. Back home, we wait nervously for the side-effects to kick-in. But they stay away all Tuesday and Wednesday, which bodes well for the week.

On Thursday morning, Trish feels like crap and retreats to the couch. My parents are on their way down from New York for a few days. They will give the girls some great attention; cooking and games and going to the playground. They provide a fantastic distraction for the girls so our little ones don’t focus on the bald, prone, chemo patient on the couch.

Lily finds help for herself

Lily's get well note, typed by the school counselor.
Lately Lily has been struggling with the cancer situation more.

Several times she panicked hysterically about inconsequential stuff, like a bug.  She’s moody, needs a lot of attention and is thinking about death more often.   Our dog got allergies and was sneezing a lot, and she asked me worriedly  ‘He’s not gonna die is he?’.

I was beginning to worry about her and then she did a really smart thing. Without our prompting, she talked to her (great) teacher, Mrs. Wunch, about the cancer. Mrs. Wunch suggested that Lily spend time with the school counselor Ms. Golden.  Lily went there several times this week and seemed to really benefit from the sessions.

Emma, can't ignore the facts.  "even though it will be six months'
We’re amazed at Lily’s self-awareness and courage, but also at the public school system’s capacity to provide meaningful support for an issue like this.  There must be so many kids with bigger challenges.

During the sessions, Lily made the note above, and brought home a stuffed red heart for Trish to hold ‘in case Mommy gets scared.’  Emma made one too.  In her realistic style she reassures Mom with “Get well soon, even though it will be six months.”  LOL

Lily on the phone with gaga
With a little encouragement from me, Lily decided it would be a good idea to talk to Gaga, Trish’s mom.  Gaga is a long-time breast cancer survivor and spent almost an hour answering all of Lily’s questions including funny ones like ‘Is cancer pink?.’

The next day,  on the way to the bus, Lily shed a tear and said to me ‘Thank you for taking care of my Mommy.’  For seven years old, she is very adept at getting help for herself and using it.  I’m proud of her.

Sick in style

Everyone loved Monty.
My parents have arrived, which means it’s time for Trish, our dog Monty, and me to leave the grandparents and kids at our house and park ourselves downtown at one of our favorite hotels, Helix, near Logan Circle in DC.

We’ve reserved two nights of clean, quiet rest while she goes through the worst of the nausea.  It’s an experiment to see if it helps her.

They let us bring our dog, which is a feature of all Kimpton hotels. Monty is a reassuring presence in the room, softly panting while Trish climbs into the white sheets for 48 hours of quiet sickness.

Monty protects Trish while she sleeps
This room at Helix has a kitchenette, and I unload the cooler. I’ve brought all the foods she nibbles while sick: mashed potatoes, macaroni and cheese, grapes, apples, pringles, hulled peanuts, gatorade, vitamin water, sparkling water, and a few other things for myself.

Nausea

As I’ve discussed before, avoiding nausea is the key to surviving a chemo treatment. After the bad, 9-day nausea experience in the first round, we attack the symptoms more aggressively.

She starts Prilosec a few days before treatment, and begins a three-times-a-day gasX routine. We up her daily dose of Xanax to keep the anxiety down, and we triple the stool softener, until the last day when we switch to Immodium. The regular medications are the same; the anti-nausea Zofran and Emend, a steroid called XXXX and Ativan.

Riding the wave of Nausea...
Because she can’t get any coffee down during treatment, I add a small amount of caffeine to avoid the headache of caffeine withdrawal, and once a day on the worst days she takes a Bonine, which is for seasickness. We also limit her eating to small meals given more frequently.

Anticipating the side effects and treating them more aggressively seems to work.  She still feels pretty sick, but it’s definitely less severe than before.

The experiement at the hotel is kinda fun.  We had everything we needed, although when she wants a grilled cheese, I have to walk 20 minutes in midday heat to find one! She was very appreciative of my effort, even in her chemo-haze.

The hotel provides Trish a better atmosphere to be still and rest without the ambient bustle of an active household. But the pay-per-view and TV reception sucks, which makes it kinda boring.   It was probably not worth it for the money, but I’m glad we tried it.

Susan G. Komen race

The PinkforTink raceteam!
The Race for the cure is today, Saturday. Early last week I signed-up Trish and asked two of her close friends who are runners to be her ‘Team PinkforTink’. After the race Betty and Kasey stop by the hotel and cheer Trish up.

She’s been genuinely touched by the race effort and grateful to everyone that donated in her name. In a very short time, her friends and family helped raise $2,000 for breast cancer research and prevention. Thanks everyone!

An unexpected gift

On Sunday, Trish feels a lot better. She’s still eating cautiously, but she can shower and read and use the computer again without feeling sick. I think the more aggressive nausea management has worked really well. She still had 3 really bad days (Thu – Sat), but last time it was double that (Wed-Mon).

My parents give everyone hugs and make the 6-hour drive back to their home. They’ve left us with an amazing gift. My mom cleaned out our girls clothes and put all the stuff that doesn’t fit, is out of season or covered in melted crayon in three large black garbage bags. Then they went to Target and bought several new summer outfits!

The clothes were getting out of control. It’s so incredibly helpful and our girls, just as much fashionistas as Trish, rave about their new looks.

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Dance cures cancer

It’s Sunday evening, and today is Lily’s hip-hop dance recital, something she’s been practicing with the Joy of Motion class all spring. Trish hasn’t taken Lily to practice because I’ve done all the driving for the past month, so it’s a real surprise to see how well Lily has progressed. (She’s the one in the orange shirt in this rehersal video. We don’t have the performance yet.)

One of the gifts Trish has given to me in our marriage is a deep appreciation for the art of dance. Dance has had a huge impact on her life. It’s her personal expression, a source of exercise, and an important community bound by silent, tight teamwork. Like Trish, dance is highly emotional, but doesn’t rely on words.

I love dance like I love her, and I’m trying to make dance a big part of her cancer adventure this summer.

Hip-Hop Lily

Lily seems a little nervous before the show, but puts on a great performance in front of a crowd of several hundred people on a local high school stage. Brava! (I found a summer surprise here too, see below.)

We go out to dinner at guapo’s our traditional celebratory restaurant and Trish is able to eat the fajitas, which is awesome. Considering how rough a chemo week can be, I’m pretty damn happy about the way she responded this time.

101 summer surprises

Woo-hoo!  The best part is always last.  Remember, you can’t get these fabulous prizes unless you have CANCER.  May you get yours today!

21) Stuart Weitzman Canvas Booties: Trish is wearing them in the first photo above.  The canvas breathes, but it still covers the whole foot, so she is well supported on a 5′ heel (including the platform.)  Very versatile.

22)   Helix Hotel I probably wouldn’t do it again, but it was still special to hvae 48 hours of quiet with our Dog.  And the’ve done up the former Howard Johnson’s into a hip little place.

23)   Dance with Helen Hayes: Helen is Trish’s main dance instructor/teacher at Joy of Motion where Trish does her dancing.  A one hour private class for a child was one of the silent auction items at Lily’s recital.  I secretively bought it out for $150.

Helen and I had corresponded a few weeks earlier when I told her about Trish’s cancer, so she knew my name when I e-mailed her the next morning.  ‘Would she choreograph a piece for Trish, Lily and Emma together for the one-hour class?’

Her reply: ‘YES YES YES YES YES!’   We schedule it for late July, and I will certainly be there videotaping.  Trish was weepy by the gesture and Helen’s eagerness.

24)   Flowers every week The Russians made me realize the importance of flowers.  Trish needs them around her, so I make sure there is a fresh batch weekly next to her desk where she spends the most time.

Jealous boys?  I live with a sleepwear model.
25)   Robe/Slipper/Blankets: A few new slippers, a faux-fur blanket and a few different weight robes help make the chemo weeks more comfortable.  And the sexy little kimono makes the other weeks more fun.

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