Time for tea

Susan held up the metal teapot and cloth tea cozy that belonged to her Scottish grandmother.

“Tea was the answer to every problem,” she said. “If you weren’t feeling well, my grandmother would say, ‘Let’s have a cup of tea.’ If you broke up with your boyfriend, she would say, ‘Let’s have a cup of tea.’ We would have tea, and everything would be much better.”

She paused briefly, then continued. “Of course, it wasn’t the tea itself. She had a whole routine of making the tea, then we sat down together, over cups of tea, to talk.”

Last week, I got to participate in a session run by Health Story Collaborative. The Health Story Collaborative is founded on the theory that there is healing in telling your story and in listening to the stories of others. The WBUR CommonHealth blog wrote up a summary of the session.

I shared my story, and the session felt so intensely personal that I wasn’t going to write about it here. The evening was filed with authenticity and laughter, and the energy that I felt afterwards left me wanting to just be with it. I didn’t want to check texts, emails or Facebook – unusual for me. Others who attended felt the same way. That gift of life force energy carried me for days and I continue to hold it in my heart. I didn’t want to do anything that might dissipate its special, powerful impact.

Then on Tuesday, I got my tumor marker measured. Over the past months, it has been going down, bit by bit, maybe 10 points or less at a time. Though the doctors label that “stable,” I am grateful for each drop.

This time, though, it dropped from 340 to 290 – a reduction of 50 points, or almost 15%. That is significant.

So, I’m stepping out of my silence to say, find a friend and take out the teapot. Share your stories, and listen with your heart. These seemingly small things make a big difference in our world.

If you are interested in sharing your story, find out more at Healing Story Sessions or email healthstorycollaborative@gmail.com

Love,
Marie

Back in the saddle again

Thank you for your support, prayers and cheers along the way!

On Sunday, I returned home from Brazil.

On Monday, I had a CT scan.

While I would LOVE to report that the scan showed no tumors and only stitches from spiritual surgeries in Brazil, that was not the case.

It looks like everything grew. I’m not surprised, because I have some discomfort in spots on my abdomen and pelvis. My CEA is the highest it has been, and I am bloated.

I’m not excited about starting chemo again. In fact, I kept my doctor talking for over an hour, pathetically and desperately postponing the start of my infusion.

But that appointment ended and now I sit in the infusion waiting room. I am so grateful to have had the four months off, and now am very grateful for any prayers and positive energy that you can send my way for a smooth healing treatment.

Lots of love,
Marie

You get what you need

“It will be fine,” said my aunt.

“Everything is in Divine Order,” shared my friend, Al (quoting HIS aunt, Gloria).

Thank you for your prayers, positive thoughts and supportive messages.

I drove to Dana Farber this morning in a dark rain, the kind that feels like it will last all day.

The doctor said that the scans showed no new disease but some growth of the current “minimal disease.” My CEA (tumor marker) is at 170. My last CEA was something like 70; normal is 2.5 and below.

Basically, we are watching three tumors. The one between my liver and diaphragm is stable. Yay! The two in my pelvis – one on my right and one on my left – are showing growth.

After discussing several treatment options with respect to our summer vacation plans, we decided to schedule another scan followed by some chemo appointments for August. I could call if I changed my mind and wanted to start chemo right away.

By the time I finished my appointment, the rain stopped completely and the sun started to break through the clouds.

This afternoon, I was lucky enough to go for a row with Lisa. When I arrived at the boathouse, she introduced me to Sara Hall, the author of the book I’ve been reading (Drawn to the Rhythm). Sara started rowing in her 40’s and, in three years, went from novice to World Masters Champion in the women’s single shell. On the dock, I got to watch the women’s quad, who are headed to Henley tomorrow. Both meetings infused me with the sense of endless possibilities, no matter where you begin.

The river carried post-rainstorm detritus and the current was quick. The sun was now shining in all its glory and the surface of the water was calm with very few rowers.

I set off and rowed directly into the next dock. With a little help, I got on the right course and the rest of the row was beautiful and smooth and amazing and soul-filled.

The beginning of summer vacation, with everything truly fine and in Divine Order. Thank you for your prayers, helping to bring all this about. I hope that you can feel the fine Divine Order happening in your life, or at least trust that it is revealing itself.

Love,
Marie

Disengaging for a bit

Sometimes, it is hard to see this journey as an adventure. I went into chemo yesterday, and I asked the nurse to check my CEA (my tumor marker). I saw her to go the computer near the area where I was sitting, type some things in, and walk away.

My instincts felt that wasn’t good, but I tried to push away those feelings with logic. “Maybe that isn’t a computer she can use to check the numbers.” Which I know isn’t true.

She returned to hook up another bag of chemo to my line.

“Did you find my CEA?” I asked her.

“Oh, I need to print it out. I couldn’t print it from the computer I used,” she said, keeping strangely busy with her work.

“It doesn’t show on the screen?” I asked her. “I don’t need a printout. Just the number. Did you see the number?”

“I don’t remember it.”

“Can you check again now?”

“It is up a little.”

“A little. How much is a little?”

“It is 160.”

“That’s more than a little. That is more than double my last number.”

“I know. I’m sorry.”

“If the chemo isn’t working, maybe I can just skip today.”

“You can’t. You need this treatment, then get your CT scan next week. You never know. It might be stable.”

“A CEA that doubles does not indicate stable.”

We were quiet from there. This is hard.

Two different religious people came to visit me that session, the first time in the year that I’ve been at Dana Farber. They were a nice distraction and listened to me so well that I actually felt entertaining. One of them even asked if he could use my words in his sermon on Sunday. Then I slept.

It is a day later and I still want to escape this whole thing. I spent the day reading and futzing around on the computer. The kids came home from school, and they played around me.

Then, the younger one asked me to help him build a garage out of blocks. I had been in my all-day habit of doing nothing and it was hard to step out of that, so I told him that I would watch him. He moved closer to me and sat on the floor, quietly building and periodically saying, “Look, Mama! Watch this!”

While he was building and I was escaping into my own world, it occurred to me that, now more than ever, rather than escape, which I dearly, dearly want to do, I need to do the complete opposite. I need to engage even more.

Man, I never thought it would be this difficult to just live life. Thank you for being there, for helping to carry me, especially when times are hard.

Love,

Marie

Going back on chemo

Thank you for your support and your messages, your concern and your positivity. Thank you for riding the waves with me. Though my CT scan seemed to show some growth, one doctor later said that the tumors looked stable, and I was feeling pretty great and just SO happy to not be doing chemo. I could continue rowing, get the kids settled in school, and start teaching CCD (which I volunteered to do until they found someone else, but then fell in love with the kids so I committed to teach for the year, along with some generous substitute teachers). I could visit with friends, both in person and on Facebook. Make our own meals. In short, basically, live a normal life (for me).

And then, I returned to Dana Farber for a blood test last week. It showed that my tumor marker rose yet again, so I decided to go back on chemotherapy. It just felt like the right thing to do.

When I returned from Brazil, I knew that, no matter what was going on with my body, I got exactly what I needed. Whatever changes happened because of that trip were amazing and life-changing in more ways than I can describe.

Of course, I prayerfully hoped that there would no longer be any sign of tumors. But, for whatever reason, they appear to be there, kind of like some mechanical malfunction that is still being fixed.

My body isn’t alone in this. When I returned home from the two weeks away, my car battery was dead. This is typical – because I rarely drive my car, my battery dies so often that we have a battery charger specifically for this purpose. However, this time, we recharged the battery several times and it wouldn’t hold a charge.

Normally, I am impatient to get the car going again. I usually discover that it won’t start when I am already five minutes late for wherever I am supposed to be. This time, though, that dead battery didn’t bother me. In fact, taking the car to the shop felt like more of a hassle than biking everywhere or borrowing the “nanny-van.” The car remained in our garage for another week or two. I didn’t even miss it.

During this time, I ran into my friend, Shira, who compared the breakdown of my vehicle to the changes in my body, saying something like, “Like the battery in your car, the battery in your body, the thing that got you going before you left for Brazil, is no longer working for you, and you don’t miss it. You have other ways of getting around now.” So true!

Eventually, I transferred the car to the shop, and the mechanics took over a week to find the problem and fix it. I really didn’t mind the delay, and figured it would return in its own right time.

Within 24 hours of its return, the “low tire pressure” indicator light flashed on the dashboard. That light is pretty reliable – every time it flashed in the past, I had a nail or something in my tire that would soon lead to a flat. This time, though, I felt like it was an error and I drove with that indicator flashing for more than a week until the babysitter decided to take it into the shop for me.

And – it was a false indicator! Nothing wrong with the tire. So I am hoping this is an analogy for my current CEA – that the CEA is just an indicator and not actually reflective of some other thing going on.

In the meantime, I am walking this path the best way I know how, and trying to take one day at a time. For the first time, I do feel in my soul that I am healing, and that chemotherapy is part of that healing process. I will start on October 9.

You are part of the healing process as well. We each have a role in everything we touch, and your touch in my life feels like grace. Thank you.

Love,
Marie