Chemo resumes next week

Thank you for your prayers and your good wishes, your presence, your texts, your emails, your comments. I feel a bit like you are cheering me up Heartbreak Hill on the Boston Marathon route – it definitely keeps me going.

The good news is that everything we covered today with the oncologist was familiar territory. Yes, there is growth, but all in the areas where there was known tumor. Yes, I feel bloated, but they found no ascites (fluid that the tumors can generate) so it is likely due to tumor on my colon slowing down the works. And yes, I am short of breath, but that is probably due to my diaphragm being squeezed from all the crowding in that space, not because of new lung tumors as I had feared. And yes, my CEA (tumor marker in my blood) was higher, but it has been that high before and we got it back down.

In fact, it was hard to find the spots on my lungs, so that was good news. As for chemo, there was no room at the inn today or tomorrow, and I don’t want to have chemo Thursday – Saturday, so I will start next Tuesday. That is the physical side. The emotional and spiritual sides of me feel strong and happy. I poked into the dark and dusty corners of my mind and heart (places I usually don’t like to examine without a trained professional) to see if any scary thoughts or emotions were hiding there. But I really do feel good. My amazing cousin, her son and her fabulous friend were all visiting today and that makes me happy. Life overall is good. While I am not crazy about going back on chemo, I’m glad to have it as an option. The doctor made a remark about the gastrointestinal floor being the busiest one and how they are working to provide more space. I inferred that meant that they see a lot of GI cancers. So keep those intestines moving! Eat good foods, drink lots of water and keep your body moving. Get tested when you should and if you feel the need for a test and you can’t seem to get it, advocate for yourself or change doctors. You don’t want to be another one in this crowd!

I spent the past week preparing seemingly endless meals and snacks for the kids and their friends, delivering yet another glass of lemonade to a thirsty child, wiping sticky popsicle drips off the kitchen floor, telling the kids to go play outside, driving them to the pool, taking care of various animals. I wondered if I was frittering away my chemo holiday.

As I sat here today with the dog at my feet and my son on my lap, trying to write this post despite constant interruptions, I got this message.

The days go by with so many little things that don’t seem to matter
until they’re no longer there
and suddenly, they’re all that ever mattered.
-from StoryPeople by Brian Andreas

Enjoy the little things that make up your day. They matter. They are love and life.

Blessings and love always,
Marie

Back to the Ordinary

“It’s hardest to love the ordinary things,” she said, “but you get lots of opportunities to practice.”

Brian Andreas for StoryPeople

I get to celebrate my birthday! I never used to care about birthday celebrations, but now I am just so tickled to grow another year older that the day itself feels special even if nothing is planned.

During chemo, I plan my life in one-week cycles: One week set aside for chemo and recovery, and one week set aside for ordinary life. Now that I am on a chemo holiday, I am thrilled to have many weeks in a row set aside for ordinary life.

I considered what to do with this block of time. My world often feels so small during treatments. Maybe we should rent a villa in Italy? Visit friends in Greece? Take the kids on a tour of Europe? Go to Hawaii? Alaska? Australia?

A feeling of accomplishment feels wonderful and would be a nice change. Should I begin a new knitting project? Acquire a new skill? Read my pile of books? Write a book? Return to rowing? Organize our home? (ha ha ha ha)

Connection feeds my soul. Maybe I should jump onto the already-moving train that is my family. I could actually be present for my children at their events and spend time with my husband. We could visit friends and help others. We could strengthen each other and laugh and have fun.

I haven’t figured out how to do all of this, and it might not be possible. But if I don’t select something, I may end up not doing anything.

How to decide? I considered what I miss the most when I am doing chemo. I miss the ordinary. I miss taking a shower, eating without nausea and moving without being tethered to a tube.

I miss thinking about what my family needs and being able to act on it. I miss easy laughter and relaxing times with family and friends. I miss exercise. I miss helping others. I miss traveling. I miss the ability to plan ahead.

So I’m working through all this while I enjoy cooking our daily meals, the impromptu visits of our friends (both adult and children!), and all the busyness that accompanies the end of the school year. No decisions yet, but maybe soon.

I suspect that my birthday will be an ordinary day, driving kids here and there, cooking creatively and seeing friends. And that is just perfect.

Excerpted from The Parent’s Tao Te Ching, Ancient Advice for Modern Parents by William Martin. Good words for me to remember for myself.

From the chapter Make the Ordinary Come Alive

Help them instead to find the wonder
and the marvel of an ordinary life.

Show them the joy of tasting
tomatoes, apples and pears.

Show them how to cry
when pets and people die.

Show them the infinite pleasure
in the touch of a hand.

And make the ordinary come alive for them.
The extraordinary will take care of itself.

Thank you thank you thank you for your very presence, making my very ordinary life to feel extraordinary in the most beautiful ways.

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

Unheard music

copyright Brian Andreas, StoryPeople

The words in the picture say:

Don’t you hear it? she asked & I shook my head no & then she started to dance & suddenly there was music everywhere & it went on for a very long time & when I finally found words all I could say was thank you.

For the past few weeks, I have been nursing this cold and been without a voice. I went for nights on end without sleep and my brain was cloudy. Adding chemo to that, twice, weighed me down, and my vibrational energy became heavy and sad. It felt a bit like swimming in mud and I couldn’t seem to get moving in any direction. During the last chemo, I just sat and cried.

For weeks, all I could see and feel was grey and death and sadness, and it kept getting worse. I couldn’t see the light, I couldn’t hear the music, and I couldn’t feel the beauty.

But then, you were there. You sent emails, brief comments, breezy texts and good food. You sent invitations and you even showed up in person. So even if I still was mired in the muck, you provided small glimpses of good vibrations. I couldn’t feel it right away, but you kept at it until I could see the joy and light you bring, and until I could let some of that in. I began to feel your presence as you went about your life, and that helped me to shift in ways that are small but significant.

Thank you for doing your dance and for keeping it going until I could hear the music.

Thank you.