Setting goals

We set life goals, tangible and intangible, such as achieving a level of professional success or creating a certain style of life. We also set near-term goals. For example, when I used to run, I would decide to run three miles, then along the way, set mini-goals of running faster until the next lamp post. These smaller goals helped me in reaching the larger goal.

Since my diagnosis, the tone of my goals has changed to sound more like, “How long can I live?”  I set out for 20 years and the mini-goals, so far, look like this:

– See our older son make his First Communion and be able to host family
– Attend his fourth grade poetry reading and listen with my whole heart
– Help our younger son transition to his “real” school (from preschool)
– Celebrate another wedding anniversary with my husband (I reset this one every year)
– Prepare for and attend the First Communion of our younger son

I feel so lucky to have attained the first four, and I have the fifth one in my sights.

In the meantime, as other goals pop into my head, they get added.

For example, last week, I was loving my 10-year-old car. Yes, it has given me problems here and there, but lately, it felt reliable and like it would go on forever.

Goal: I would love to outlive my car.

Immediate gut response: Careful what you ask for.

The next day, I started the car in our garage and slowly backed out. The engine felt sluggish, but I attributed that to our crazy-cold weather. As I backed up further, the ABS and BRAKE warning lights flashed orange on my dash. Then the BRAKE light turned to red.

I checked the handbrake. I’ve driven with that on before, but it was not set. Halfway out of the garage, I thought, maybe I just needed to restart the car?

I turned off the ignition. Instantly, I realized my mistake, but the deed was done. I could not start it again. It wouldn’t even turn over. Not a click.

I looked over my left shoulder and saw the side of the garage door right next to me. I tried to open it, but there was not enough room for me to get out. I was effectively locked in the car. Sigh.

What were other options? The backseat doors were clear of the garage! I climbed over the seat. Not so easy to do with a colostomy bag, sore abs, and generally under-used muscles, but I did it! Once out, I felt thrilled with my little physical manipulations. One problem solved. Now to worry about getting the car started.

Just then I realized – it was FREEZING cold outside and the garage door could not close with my car in the way. We would be heating the outside for hours through an opening the size of a garage door!

Call to hubby, my salvation in all things that I cannot handle on my own.

Yes, I see some parallels to my body. Sometimes it feels a bit unreliable, but I can go for such long stretches of feeling good that I feel like the problems are gone. And then suddenly, they crop up again. I can feel trapped, but I luckily have been able to climb out. Maybe a little awkwardly and with some effort, but it works. And much of the time, I look at my situation and realize that I need help. Fortunately, help arrives.

My husband came home, pushed the car out of the garage, and charged it. He charged the battery, but it wouldn’t hold a charge. Because this is the fourth battery in 10 years, and we had countless mechanics say they can’t find a problem, it feels more like some obscure electrical problem.

It became clear that, as much as I loved this car, it was time to move onto another one.

So, check that goal off my list. Next!

Manifesting our visions

Warning: This post is not for the faint of heart or stomach.

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A-man recently asked me, “If emotions can cause your body to make tears, what else can emotions do in your body?”

Good question. In my healing, I spend a lot of time working with the connection between emotions and changes in my body and gained lots of observations. I notice that joy and laughter make my body feel noticeably better and lighter. Stress registers as pain in the tumors before it registers in my psyche, and certain emotional situations cause them to bleed. I’m sure there are more connections to learn.

Leading up to my last chemo session, I had a very emotionally upsetting interaction, lowering my immunity and enabling the start of a cold. Thankful that it wasn’t the flu, I held it at bay for a few days.

Going into chemo with the start of a cold isn’t usually a problem for people (I’m told), but for me, chemo makes my white counts plummet, which means that I can’t fight off anything on my own. I considered skipping this chemo session, but I had already skipped the last one, so we plowed forward, hoping for the best.

The next day, my white cells were gone and the cold took over my body. I was completely congested, lost my voice, and felt like crap.

My first thought was, “This isn’t fair. If I am dealing with chemo, I shouldn’t have to have a cold, too.”

Of course, that isn’t how life works, at least for me. Instead, crap begets more crap, and I can get stuck in that cycle.

I stayed in bed from Tuesday through Sunday while my white cells regenerated. Tiron held down the fort with work, the kids, and keeping me from landing in the ICU.

On Sunday, we had tickets to see Pippin at the ART. The last time I attended a performance there (to see Porgy and Bess), I was so riveted that, even though my colon started growing out of my body, I couldn’t tear myself away. Immediately following that show, I went directly to the MGH Emergency Department and narrowly averted surgery. Fully knowledgeable of the possibility of landing in the ED again, I still didn’t want to miss this show and thankfully, all went well.

On Monday, A-man did his fourth grade poetry reading at his school assembly. This is a rite of passage at his school and my anticipation of this has literally kept me alive for four years. I still had no voice but I wanted him to have someone there who listens to him as only a mother can, and I got to do that. Woo hoo!!!

Later that day, Tiron and I got a bummer phone call. It wasn’t unexpected or health-related and it is ultimately manageable, but still a downer and the timing caused me to reflect on how sometimes, the crap just keeps dropping.

I kept imagining a small creature crawling through the grass. If it crawls through the spot where a dog regularly goes to the bathroom, crap will rain down on it though no fault of its own. If it doesn’t move from that spot, more crap will rain down the next day. And the next.

I had to get out of this cycle.

I firmly believe that we manifest much of what we envision, and made a mental note to envision something new, something big, something on the order of the poetry reading. However, I only made a mental note. I didn’t actually envision anything new.

On Tuesday, while walking somewhere with A-man, a bird pooped on my jacket. After our initial surprised shock, we had a good laugh. It was easy to clean and felt like a clear message that, if I was envisioning myself as that crawling creature getting crapped on then, yes, we manifest what we envision. Definitely needed to envision something new. Still, though, it remained only a mental note.

On Wednesday, I took Julian and his friend, B, sledding. I still had a cold and no voice, but I wanted to get out of the house and spend time with the kids. Sledding is a three-minute drive, both kids are able to carry the sleds and I would just stand and watch. No problem.

Shortly after we arrived, my colostomy bag filled. This was unexpected; it never fills that quickly. Without a convenient bathroom, I mainly hoped that nothing more would pass and things could wait until we got home.

However, time passed, and I got more anxious. B must have sensed this, because she said, ”I’m ready to go.” YES, B!

But J-man wasn’t ready to go. He slid down the hill again and made some snowballs. With no voice, I couldn’t yell after him that it was important to leave now, so I started walking to the car. B walked with me, reminding me gently, “It would be more polite to wait for J-man.” Yes again.

We finally loaded ourselves into the car and were not even out of the parking lot when my colostomy bag blew. It literally blew off my body. I was busy praying that everything would stay contained when J-man said, “Yuck! It smells like Kenobi in here!”

Kenobi is our dog, who I don’t think smells like poop. But I get his point.

“It’s my bag,” I said, focusing on my driving.

“Your bag?” asked B. A perfectly natural question, and J-man covered it.

“My mom poops in a bag.”

I’m SURE that sounded strange. There is no way on earth that would sound normal but I had no extra cycles to normalize it. I willed the cars in front of me to move forward and tried to ignore the definite oozing I felt on my belly, leaving that discussion to the six-year-olds. If there were any more questions, I could cover it later or B’s mom (a doctor) would handle them for her. I didn’t want her to be permanently scarred by this.

Once I got home, the kids played outside and I ran inside screaming in some hoarse, unrecognizable, crazy-woman voice. My clothes were literally covered in shit. I just wanted to get away from it all but of course, I couldn’t. I had to clean it all up.

As I stepped, fully clothed, into the shower, I realized that, while crap might rain down from the sky, the most unpleasant and difficult to deal with is my own. As much as I want to run from it, I am the one responsible for cleaning that up and moving on.

Postscript: A blog differs from a book. As much as we can be absorbed into a book, we ultimately recognize that the characters are not real people. Because of that, you may relate to this absurdity in a different way. While you might feel shock, horror or disgust, it is also okay to laugh. Or maybe I should simply let you know: I find that the best thing I can do is acknowledge the absurdity, laugh, and move on. So please don’t worry about me in that way. And appreciate the wonder of your intact body!

Fourth grade poetry recital

Thank you for your prayers and good wishes. They are definitely working – this was the smoothest chemo session that I can remember! I was SO HAPPY to not vomit.

Feeling good also helps my spirits, to help me really take one day at a time and be grateful for that. The kids are adjusting to my return to chemo, and that isn’t easy for sure, but we are finding our way.

When I was first diagnosed with rectal cancer, my older son was four years old and in pre-K, a grade that his school calls “Beginners.”

His school feels very much like a community. At morning drop-off, parents flow among the children and make it a point to get to know the teachers as well as the other classmates and their parents. There are countless ways to be involved in the classroom and the school as a whole, and the school holds parent breakfasts, community dinners, and weekly school assemblies.

The lower school assemblies include the kids from Beginners through fourth grade. They sit in a semicircle, and any parents attending stand in a semicircle behind the kids. Some parents, like me, attend most assemblies. Others attend primarily if their child is performing that day. There are presentations, skits, group songs and individual poetry recitals. The poetry recitals are a rite of passage. Each fourth grader selects a poem that is meaningful to them, stands in front of the group, introduces themselves, their poem and what makes it special, then recites it from memory.

I love listening to the poetry recitals. I imagine the children each carefully selecting their poem, the parents who might try to suggest alternatives, and the practice sessions at home, all culminating in this moment. This background drama exists only in my imagination, because my kids are too young for us to experience this reality.

One day at an assembly, when my older son was in kindergarten, I stood next to a mom as she excitedly nudged two people beside her, who I presumed were grandparents.

“He’s next!” the mom exclaimed in a stage whisper. As fourth-grade Jack weaved his way through the seated children to stand in front of the room, his mom and grandparents held their breath. Jack took the microphone and recited his poem, doing a great job. When he finished, his mother and his grandparents audibly exhaled as one and then shared smiles, even doing what felt to me like a little cheerful dance.

As I went through chemotherapy, I often thought about this scene. I felt that no one watched and listened to each fourth grade child the way that a parent would, knowing (as opposed to imagining) the work the child put into selecting and memorizing and practicing their poem, understanding their child’s particular challenges and fears, and appreciating how, in that moment with the microphone, they rose through and above all it all to shine.

I set a goal to be there for my sons, so that they have the feeling of reciting their poem to a broad audience who would listen primarily with their ears, and to their mom, who would listen fully with her heart.

My older son just entered fourth grade, and I hold my breath as we are so close to this milestone. He is scheduled to recite his poem sometime this winter. I jokingly push for him to select The Midnight Ride of Paul Revere, which I memorized in fourth grade, but honestly, I am happy to listen to anything he selects. I just want to be there.

In the meantime, I attended assembly this morning and, as child after child recited their poem into the hearts of their happy and proud parents, tears of joy and pride quietly flowed from my eyes, for these children I have watched grow over the past six years, for all of us joined together in this ritual, and for who knows what else.

Thank you for enabling these kinds of moments. Thank you for helping me to realize how very, very special they are. And thank you for carrying me this far, to where my older son is now in 4th grade and so close to his poetry recital, and to where I get to have the opportunity to set new goals!