The Wheels on the Bus

At the end of last week, I had one of those dreams that stays in your system long after you wake. In it, the kids and I were balanced together on top of one big bike. Suddenly, the frame, with us still on it, lifted off the wheels and fell to the side, leaving the wheels still standing.

Last week could have knocked off our balance, though the groundwork was laid a few weeks before that.

At that time, our afterschool babysitter left. It was on good terms – We love Marinda but she has a lot going on right now. (One of her amazing actions made the front page of the NYTimes, and watch for her soon on Katie Couric’s show.) But that meant we needed to replace her.

Finding and training a sitter requires time and work. Then add the emotional component of the personal nature of the job, compounded by the fact that he or she needs to fill in for me while I am down. I want them to be some projection of the best of me, fill in the cracks for who I am not, BUT not be so good that the kids preferred her (or him).*

The search felt overwhelming, so I put on blinders and took it step by step. Or maybe I settled for the first taker. Who knows. We found fabulous Dot: Lots of experience, good references, and a mom who was loving yet could lay down the law.

Out of our necessity, she started during a chemo week, but I was confident that she could handle it.

In the meantime, I went into chemo knowing that there was a cold brewing in my throat, though the staff encouraged me to do chemo anyway Not to blame them; it is their job to push things forward. It is my job to say yes or no. But I was getting sick and my ability to advocate for myself was weak.

Returning home after chemo, I retreated to my bed and slept for the next two days. I forgot that my husband was traveling all week, so the kids were essentially passed from sitter to sitter for days on end and totally without a mooring. I was no help. Dot stuck out her two days then literally ran, shaking and screaming, from our house.

That is all just runway. This past week was the steep takeoff. My white count dropped and a cold settled in. I lost my voice on Monday. Started the search for a sitter, then, due to my lack of voice, had to accede control as my husband and an assistant conducted the phone interviews. Led a religious education class after school for 11 very active first graders (thankfully, Rachel helped me through this one).

Still, this felt like alot but not too much. At the end of the week, friends asked why I didn’t see a doctor. Reflecting on my week, I realized I saw many doctors, but none for me. I took the dog to two different vets for two different issues. One son to two already-scheduled doctor appointments, and the other son fractured his foot mid-week and the pediatric foot doctor kindly agreed to squeeze us in on Halloween.  Husband either working or again out of town, so I was the adult for the appointments. With no voice for any of them.

Toss in Halloween. We typically create a haunted house. On Halloween morning, I looked at the decorations and the room that would need to be converted, then made an executive decision to simply cobble together some outside decorations and call it a holiday.

After making the decision to bag the haunted house, I decided to cancel Friday’s CT scan. The drinks and the contrast certainly would not help my throat to heal, and I coughed violently every time I reclined, which would mess up the scans.

I asked my ten-year-old son to call Dana Farber for me. I planned to whisper or write the instructions to him as he spoke.

He dialed Dana Farber and got a live person. I could hear only his side of the conversation and the thoughts in my head.

“Hi. My mom is sick and can’t talk, so I am calling for her.”
This can’t be the first time this has happened, I think.

“She needs to cancel her appointment.” His tone was polite yet firm.

A pause.

“No. She can’t come in. That is why she needs to cancel her appointment.”
Ah yes. Their job is to keep events moving forward. My job is to say yes or no. Politely yet firmly.

“Mom, when do you want to reschedule?”
Nov 14, I write.

“She wants to come in on November 14.”

He turns to me. “How about next Tuesday? You can do it right before chemo.”
I recall how sick I got the last time I did the scan extra close to chemo. I violently shake my head no.

“November 14,” he states firmly into the phone.

Another pause.

“That is not November 14. She said November 14.”
Wow. I didn’t realize he actually regards my word as law.

“Mom, they have an opening at the Shapiro Center.”
Where is that? I scribble.

“Where is that?” he asks them. After a pause, he turns to me. “At the hospital, not at Dana Farber.”

Seeing my face fall (routine is my lifeline in this process), he speaks into the phone. “Do you have anything at Dana Farber on the 14th?”

Then he turns to me again. “This is the only appointment if you want the 14th.”
I weighed my need for routine during treatments against the schedule for my life outside treatments and nod yes.

Impressed, I realized that it is way more fun to have him negotiate for me than against me.

During the week, I took it minute by minute and we made it through each of the new events, in addition to our regularly scheduled programs. All doctors were seen and next steps gathered. We found a sitter who came for a 30-minute interview that turned into 7 hours of work at our house. She was up to the task but noted that the job was way more intense than our ad indicated. So she is smart, too. Thankfully, she agreed to return this week, and I will kiss the ground she walks on.

As I enter this week, I am grateful for the help that supports us, including yours. Without it, the wheels would definitely be coming off the bus. Or off the bike. Thank you for holding us all up.

With love and gratitude,
Marie

*This wording courtesy of my wonderful friend, Anna Huckabee Tull, who sets words to music.

Introducing St. Rita

Chemo on Tuesday.

We don't ride alone

My friend Marygrace drew this for me. Isn’t it wild? I love that my angel is right behind me, pedaling along, sporting purple hair that blows in the wind. I also love the flowers in the wicker basket in the front. I have been told (and Marygrace didn’t know this) that I NEED to put a wicker-type basket in the front.

A cool reminder that we are all energetically connected and that we are not alone.

From here, this note gets a little graphic. If you have a weak stomach, you may choose to skip it.

Last week, those horrible intestinal pains started again. (By now, the pattern is familiar. They start out feeling like stomach aches, then over a period of 12 hours, move into stronger and stronger intestinal pain and blockage. Eventually, I throw up several times, then the pain subsides and things settle out.)

My amazing energy healer can usually stop this in its tracks, but because of the work I did in Brazil, I am not supposed to work with her until mid-September. She taught me how to get rid of them myself, but

  1. it is much easier to turn a ship before it goes full-speed in one direction, and my pains were, by now, moving full speed ahead and
  2. the approach to eliminate these pains requires intense mental focus, and I kept getting distracted by the actual pain.

Instead, I used some amazing and effective pain management techniques. After a few hours, I realized that, while they manage each wave of pain as it comes, they don’t eliminate it. I’m a slow study. Or an eternal optimist.

Still, it was the best I could do. Then I remembered St. Rita. I first learned about St. Rita in Brazil and heard of miracles attributed to her intervention. St. Rita of Corsica is, among other things, the patron saint of the impossible.

So, I asked St. Rita something like this: Please stop this pain. Just about anything else would be preferable.

Suddenly, the pain subsided. Wow. Very cool. But, I felt this need to throw up. What on earth? I sat up and….my nose was bleeding like a faucet. And not just out of my nose, but down the back of my throat. Well, that solved the question of why I felt nauseous.

Avastin is part of my chemo cocktail, so any bleeding I get is profuse and takes a long time to stop. Still, I had to laugh. This was a decent trade-off for the pain, and I could not believe how immediately that trade-off was made.

I’m so grateful for all the non-physical beings around me – I have no clue why or how or even all the who’s, but they help. And I am so grateful for your physical help, as the physical and non-physical are so intimately intertwined. Thank you.

I head into chemo tomorrow, joining friends who are also doing chemo this week, recovering from cancer surgery, or are being scanned or biopsied to make sure there is no cancer in their body. Prayers all around!

Love,
Marie

Rolling forward

Thank you. Thank you for your patience and your support and your prayers. Chemo week is fast approaching, so I welcome your prayers especially on Tuesday, Wednesday and Thursday!

In the meantime, I feel SO much better than I did during my last chemo week. Physically and emotionally, that was a difficult week. Every spot that had a tumor screamed in pain. My back spasmed intensely from the neulasta shot. I felt gross and off-center from the chemo, and I was exhausted. The icing on the cake: I felt indescribably sad.

If anti-depressants can lift you from a poor mental and emotional state and put you in a better place, chemo took me from a better place and put me in a poor mental and emotional state. I couldn’t snap out of it, use logic, or any of my usual tools. I was stuck simply experiencing it. It wasn’t fun or cheery or light or soul-filled. I literally just wanted to die.

Compared to my post-chemo week, I thought that the chemo session itself went well. I recalled watching a movie and staying awake during the entire infusion.

But then Valerie called me three times this past week to check in. I adore Valerie but we rarely talk on the phone and typically don’t “check in.”

When I eventually returned her call, I learned that she had called me during Tuesday’s chemo session, and while I was getting the infusion, I fully unloaded my soul to her. I shared my worries. I cried. I talked about my dark vision of my future and my concerns for my family. The nurse even joined our conversation at one point. We talked for a full hour.

I remember none of this. None. Not even when she recounted it.

I’m glad that she repeatedly called to check on me. Yes, it was good to talk with her (especially since clearly, I didn’t remember our prior conversation). But also, our follow-up call helped me to appreciate that (long) moment of conversation during chemo, and she reminded me of some insights we shared at that time. All good things.

I also bring this up because if I forget a conversation, neglect to respond to an email, or otherwise drop the ball, please please know that it isn’t intentional. Obviously, I am blanking out on large parts of my life, even parts I value. Be annoyed, but do feel free to remind me, even repeatedly, of anything that needs a reminder.

Thankfully, I moved out of last week’s deep, dark post-chemo place. The bike arrived, and life started to turn around. I truly believe that God was working through whomever delivered that bike. Their grace kicked off a theme that continued for over 24 hours. Get this:

Sunday night: The bike arrived. Happy happy joy joy.

Monday morning: The sitter took my older son biking (not on the new bike – that was mine to ride first!) During the ride, she lost the key to my bike lock, setting off a string of drama about that lock which consumed all of us, all day. Small problem, I know, but chalk it up to post-chemo mood swings. And note: Bike theme.

Monday night: I posted a thank you on my blog to my generous anonymous friends. My friend, Tom, was watching Dora the Explorer and, after reading that post, he looked back at the show. At that moment, Dora was receiving a yellow tandem bike to help her solve her quest. No kidding. Love that. And love that he shared that. I decided that my yellow tandem bike was helping me solve my quest.

But wait, there is MORE on the bike theme! My friend, Ig, reminded me of one of my favorite StoryPeople quotes:

Life Cycle

This is a special bike that’s not very good at listening to excuses, so it takes you exactly where you really want to go & if you kick & scream it makes you pedal harder & go up steeper hills until you’re too out of breath to complain & after awhile, if you’re lucky, you start to see that it doesn’t really matter if you laugh or cry, because it just wants to ride like the wind.

I had been kicking and screaming and pedaling as hard as I could, going up steeper and steeper hills until I was finally too out of breath and out of strength to complain. I literally plopped myself in the backyard and just looked at the sky. Exhausted, I could now only go along for the ride. Then I began to feel the wind in my very short purple hair and smiled.

Thank you, yellow tandem bike givers, for getting this all rolling. Thank you, everyone who was part of all the unfolding (even the sitter who lost the key to the lock – I’m sure there is some cosmically-connected message in there somewhere!). Thank YOU, most of all, for reading and bearing witness to all this. I send you much love.

Marie