Baby steps

Luckily, my chemo regime is typically relatively routine – infusion from Tuesday through Thursday, followed by a relatively predictable recovery through Sunday. Within that, each day contains its own familiar cycles, including the depression that starts around Wednesday afternoon. It’s dark and it’s irrational. I understand that this depression is part of the whole cycle, but that doesn’t make it easier.

Even though I historically emerged from each depressive event so far, that logic doesn’t help me to see the light at the end of the tunnel. In the midst of each chemo cycle, every single time, I feel like I won’t make it through to a better place. Each time, I think that maybe there is no light or even an end to this tunnel. Maybe this time, I entered a cave that only gets deeper and darker.

When I feel like I can’t do it anymore, usually Wednesday night, I text one of my cousins in some socially acceptable way of saying, “this sucks and I just want to die.” She, thankfully, responds in a variety of ways that says “hang in there.”

“This is the part where I just want to go to sleep and have someone wake me when chemo is over.”

“Ah I’m sure. Hang in there. You are the strongest person I know. It’s helping you…Luv u”

 

“Not horrible but could be better.”

“At least not horrible. That’s good…Think good thoughts.”

 

“Less than 24 hours. Counting down.”

“Been thinking about you all day. Hang in there.”

I cling desperately to my connection with her, as if it were a strong rope that links me to the real world and prevents me from spiraling further and further into deeper darkness.

I simultaneously want to close my eyes and not open them again AND jump right back to the place where where joy feels effortless. I can see others being happy. But during that time, a happy place feels far away and unreachable for me.

I’m starting to realize that I can’t just jump from here to there, and I can never predict what will pull me out. This time, it was a series of baby steps that combined serendipity with a bit of grace that allowed me to step into a slightly different emotional space.

First, I prayed for help, not sure that it would come but promising to watch for it. Shortly afterward, I received a text from a friend who is going through her own horrible time. She was scheduled to fly to Florida with her children but felt that she couldn’t do it.

Then I got this message:

“Florida warm sunny and lovely…xo”

She did it! Her strength gave me a little strength, showed me a little bit of light.

Next, I received a blog post from someone who had a hard year but decidedly focused on the good parts, and I felt a little more positive.

Experiencing each of these moments was like Jesus holding my hand and helping me to take a small step forward, showing me: “See, here is a little bit of good that can enter your heart.” Though I was not yet out of the darkness, I could believe that, if I held on and paid attention, I would be led somewhere that was safe.

We traveled to Pittsburgh for Christmas to see the rest of my family. I was still sick and in pain, but slowly feeling better. On Christmas Eve, during the day, I went to see a friend. Even though she was tired, I was thrilled to get to see her and I took on lots of good energy from her. Baby steps.

That night, feeling like I was slowly making my way out of this dark place but annoyed that it was taking so long, I got an abdominal obstruction that caused waves of pain on its own, plus pulled on the tumors to make them hurt too. I lay in our dark bedroom as my husband put the Santa gifts under the tree. I couldn’t participate in anything and I hated that my illness was ruining Christmas for everyone around me and myself. Plus, we planned to travel to the Bahamas the day after Christmas, and I knew we wouldn’t make the trip unless I felt better. I used the mind-body techniques I knew, and they helped, but progress was slow.

I needed to know that I wasn’t alone, that someone was with me. I prayed, “I need some light, something.”

Just then, the bedroom door, which had been closed but not clicked all the way, opened just a crack and a thin stream of light poured into the room and onto me. Even though I was still in pain, I started to feel a little more optimistic.

I laid awake until about 3:00 in the morning, working through the obstruction. I started to feel better and drifted to sleep when, at 3:30 Christmas morning, the light on the bedside table next to my side of the bed turned on. I kid you not. It was not a timer. It just turned on. It was a three-way light and thankfully turned to the dimmest setting. I had to laugh inside. I might still be recovering, but so many things are out of my control. I felt like it was a sign. And if a light could turn on by itself, then maybe anything really is possible.

Christmas day was lovely, and as I write this, we are on a flight to the Bahamas….

Thank you for all the tiny things you do (and the bigger ones too). Each one makes a difference that changes a life, including mine.

Love and light,
Marie

 

Unknown obstacles….and graces

Many people remember the date they received their cancer diagnosis. I’m not so great with remembering dates (even birthdays) but related events and time of year do evoke memories.

These weeks before Christmas call to mind this time of year in 2007. I was newly-diagnosed with colorectal cancer, healing from surgery, just over sepsis, and deciding where to do chemotherapy. Apparently delusional as well, I figured that we could maintain our normal holiday traditions, and I would start treatments in January.

My husband, our two sons and I planned to travel to Pittsburgh to celebrate Christmas with my extended family. Our sons, at one and four years of age, were very excited about the prospect of Santa and presents, so I spent days online ordering a boatload of gifts (I’m sure to compensate for my cancer diagnosis) and sent everything directly to Pittsburgh. They would have more presents than they dreamed, and I was excited about spending time with this huge group of family I love. We were all set.

Then we hit a glitch: Every doctor at each of the treatment centers I consulted felt strongly that I should start chemo as soon as possible. As in, before Christmas.

This meant that we would be spending Christmas at home in Cambridge, where I had no gifts for the boys and no huge group with whom to celebrate. Total bust.

Now, in addition to feeling scared, confused, ungrounded and alone, I was devastated at the loss of a happy Christmas celebration for the boys and our family. But, unlike cancer, I eventually decided that was a tangible problem to solve and I was always good at those. Maybe I could manage it.

So I took a deep breath and thought….what productive thing could I do to salvage our Christmas? I decided to buy one really special thing for each boy and create an elaborate “treasure hunt” for them to work together and find their gifts.

In the FAO Schwarz catalog, I found a really cool, huge, plastic backhoe-loader truck for our four-year-old. It had a front seat and a back seat, a claw that could open and close and pedals to move its big wheels. For our newly walking one-year-old, I found a cute, round bug-like thing on wheels that he could ride independently.

I ordered these and procured the shipping to ensure they would arrive in time for us (my husband) to assemble them for Christmas.

A few days passed with no sign of the packages. I seem to remember that I started chemo in that timeframe. After a week, I contacted FAO Schwarz. They nicely said that the packages appeared to have been delivered. Maybe a neighbor got them by mistake?

I emailed the neighbors. No sign of errant packages. I called FAO Schwarz again. They promised to work on it. Each phone call was another day passing, another day closer to Christmas. I couldn’t get out to shop, and I had already spent a fortune on gifts that were sitting in Pittsburgh. Plus, I was out of creative ideas. Add “incompetent” to my myriad feelings.

In desperation, I found myself crying over the phone to the FAO Schwarz salesperson. I blubbered that I had just received a cancer diagnosis and was starting chemotherapy. I shared that my kids were one and four years old and these were the only gifts I could get for them this Christmas. She thought and then offered to send a duplicate of each if I promised to return the others if and when they showed up. I didn’t have a lot of confidence that these duplicates would arrive in time but I accepted her offer. It was the best I could do.

The next day, about two days before Christmas, I received a phone call from a woman in Illinois. She had been out of town for over a week, she told me, and when she arrived home, found two packages on her porch. Both were from FAO Schwarz and addressed to me, so she assumed they were Christmas gifts. She tracked down my phone number and called to say she had already sent them by overnight delivery to my home.

Stunned and overwhelmed by her humanity and generosity, I could only repeatedly say thank you from my heart. In retrospect, her actions were a lifeline providing the connection and grounding I needed to begin to get back on my feet.

She didn’t ask for money to cover the postage and she didn’t leave her name. I never explicitly told her about the positive impact of her phone call and efforts. I still carry the image of her as an angel on earth.

When Christmas morning arrived, we held our breath as the kids joyously completed their treasure hunt. Our four-year-old was thrilled with his backhoe.

Our one-year-old, expecting something equally large and wonderful, was sorely disappointed with his ride.

Maybe he couldn’t pedal, but he had the upper body strength of Bam Bam and threw that bug across the room in fury. We laughed, and all felt suddenly normal; Christmas was saved. The day might actually be okay.

Each year, as Christmas approaches, I gratefully remember the compassionate woman from FAO Schwarz and the angel from Illinois (as well as my husband and brother-in-law, who together assembled the digger in the wee hours before Christmas).

Looking back, I wonder how I would have felt if someone at that time gave me details about the road ahead. Would I have panicked at the thought of all the treatments and surgeries and visits to the ER? Been sick at the thought that I would still be doing chemo and living with uncertainty?

The other day, one of our sons picked up a book that was a bit more difficult than his usual read. After working through it silently for awhile, he noted, “When I skip ahead and see a hard word, I can’t read it. But if I read along and then reach that page and that word, I can suddenly figure it out.”

I am sure that if I knew those life details in advance, I would have thought I couldn’t do them. But as each came up, we somehow, thankfully, either figured it out or bumbled through and moved on.

During this time before Christmas, I feel thrilled and amazed that I am here to celebrate again (even if I am still doing chemo). Yes, there have been trials, but the amazing experiences outweigh those: The exceptional and the mundane events that now appear in technicolor, the people who step up and in to help and carry me and my family, the friends I would not have otherwise found, the laughter I thought I might never feel again. I learned to row, started writing, traveled to places I otherwise would never have gone. I like to think I am more compassionate and patient than I otherwise would have been, and I parent differently. These are all gifts that might have been delivered to another person, but were also magically sent to me.

At this time of year, as I remember my early days traveling this path and realize where my family and I are today, I am stunned and overwhelmed by humanity and by the grace of God. I sit in profound gratitude and can only repeatedly say “Thank you” from my heart.

Do you see what I see?

It has been fabulous to have an extra week away from chemo. I feel like my mind has some space to clear away the fuzziness I can get from the drugs.

Coincidentally, I’ve been talking with quite a few people about the anti-nausea drugs that I take and don’t take. One of them turns me into a different person. When I take it, I know that I am not thinking the way I usually do or acting the way I want to act, but I can’t help it. If someone were to tell me that I am being irrational, or that what I see isn’t really true, I become even more irritated, angry or sad, but it doesn’t change my view of reality. I can’t “snap out of it” or use logic. I just am where I am at that time.

That experience has helped me to see how thin the line can be that divides the way we each see the details of life and the feelings that drive our behaviors. It has also helped me to understand that maybe others cannot help what they are doing or saying, and maybe that it all makes sense in their version of reality. I hope it makes me more patient, though I suspect not as much as I would like to believe.

Regardless, I’m always glad when I don’t have to take that drug – I like the version of reality to which I have become accustomed.

In this version, I felt lucky to go to Mass at my parents’ church on Christmas morning with my family, my sister and niece and my parents, taking up an entire pew. Looking around, I noticed a woman in the pew to the left of us holding a baby girl who appeared to be sleeping. The woman was of the age where she could have been either an older mother or a younger grandmother. The baby’s head rested on the woman’s shoulder, on the other side of my view, but her arms lay limp at her sides in such a way that I assumed she had problems with her muscle tone.

I didn’t watch them much after that, though the woman caught my eye when she left the pew and headed to the back of the church, carefully carrying the baby and a diaper bag.

She returned a few minutes later, sat down, then held the baby face-to-face, nuzzling noses. I tried not to stare but noticed the baby’s perfect face.

Turning to my seven-year-old son, I told him, “Look at that perfect little baby. She looks like a doll.”

“She IS a doll,” he hissed at me, indignant at being in church at all and now annoyed to be with a mother so daft as to believe that could be a real baby.

I squinted to study the pair. Yes, it was a doll. But the woman was clearly interacting with the doll as though she were a baby, supporting her head as she held her, and making loving faces at her. She even glowed with the happiness of having a new baby.

I asked my mother, “Is that woman always here?”

“Maybe. I never noticed her before.”

At this point, I made up a story in my head. The woman always wanted to be a mother, I thought. Maybe she got this baby doll for Christmas and, for her, it is as real as any other baby.

As Mass came to a close, she carefully put a warm coat on the baby and lovingly wrapped her in a blanket. As for me, I directed my boys in a different direction so that they wouldn’t helpfully blurt out something like, “Don’t you know that is a doll?”

Who are we to interfere with her reality and her happiness? She clearly wasn’t bothering anyone, the baby (doll) was making her happy, and she got to share her love. We all have our own little version of reality anyway. This is evident when I mediate a disagreement between the kids, each of whom fully believes their own version of the truth. I am reminded of this when someone has the same values as me but their point of view differs radically from my own. And I live this when I take a new drug that shifts my version of what life is like. Through this experience, I hope that I am becoming more able to embrace the variety of views we each carry and meet each person wherever they are at that time. And I appreciate your embrace and good humor along the way!

Lots of love in this new year,
Marie

Come together

For Christmas, we travel to Pittsburgh to be with my family. Every year, we attend Mass together on Christmas morning, and every year, the kids practically whine, “WHY do we have to go to Mass?”

Usually, I feel crunched for time and rattle off some quick response along the lines of, “Do you know why we celebrate Christmas at all?” or “You got all these great presents and you can’t give an hour to God?” Even if the kids stop asking and move toward the door, I’m sure that answer doesn’t satisfy them any more than it satisfied me at that age.

Outside of Christmas, I sometimes wonder about the difference between attending a service with others or praying (or whatever) individually to connect with God. I do believe that God is everywhere, and we each have our own way of making connections. But still, I feel moved in a different way after gathering in a group or even acknowledging as a group that something is special.

I recalled a rare Easter Sunday visit to Pittsburgh, years ago. As my husband and I drove from the airport to my parents’ home, I realized that it felt like Easter but didn’t know why. My husband, craving a bagel, realized that all the bagel shops were closed and in fact, there were very few stores open at all. He found it odd and a tad inconvenient, and I suddenly felt like the whole city was celebrating Easter together, setting it aside as special from any other Sunday.

This Christmas, I received a note from a friend that reminded me of “The Vibe.” The short version is this: I once managed a project team where, at every weekly meeting, we would come up with a vision of what needed to happened in order to move our work forward in the best way. Though the vision might feel outlandish to our logical minds, our only criteria was that it had to resonate emotionally in the gut of every person in the room. Surprisingly, we came to a quick consensus every week, and every week, our logically outlandish vision came about. (If you want more of a description, I wrote a post about it here: The Law of Attraction.)

Recounting these random memories to a friend, she pointed out that in each case, there was the power of a group joining together, directing our emotional and spiritual energies toward a single vision. And maybe that is a big part of our human experience on earth: To connect with each other and to that which is larger than ourselves.

Perhaps it is similar when you pray for me. Thank you for coming together as part of a larger group. Together, your prayers and good will have power beyond just one person. Your vision of a healthy life for me moves my life and make it all more real.

God bless you.
Marie

O Holy Night

Till he appear’d and the soul felt its worth.

This beautiful line, from the Christmas carol O Holy Night, speaks to me this season as I reflect on how the birth of Jesus had such an impact, not just on the world as a whole, but on individual lives as well.

Please know that you make an impact on individual lives, including mine and those in my family. I hope you feel, deep in your soul, contentment and joy in knowing your worth in this life.

Love to you, along with a blessed holiday and year ahead,

Marie

‘Tis the season

Zooming into Christmas, there is so much to appreciate. Mostly, I am giggly that I still get to hang out here!

For example, this is me and the boys in December 2007.

I had recently recovered from surgery and sepsis (whew).  Our traditional plans to spend Christmas with my family in Pittsburgh were blown out of the water – we had to stay in town while I continued chemotherapy. Not much of a decorator under the best of circumstances, our holiday decorations were pitiful and I didn’t have presents to put under the tree.

It didn’t feel much like Christmas. We wanted something to make the holiday memorable in a happy way.

Friends told us about the Polar Express train ride in New Hampshire, where families board a train and get to wear pajamas for the ride, drink hot cocoa and eat chocolate with centers as white as snow. They disembark at the “North Pole,” where they are greeted by elves who walk them to a hut where the little boy who is now a man reads the book The Polar Express, telling his story. Santa makes an appearance, walking among the crowd, eventually selecting a little boy to pick the first gift of Christmas. That little boy asks for a bell from the reindeers’ harness, and asks for one for everyone. Then everyone boards the train for home, singing Christmas carols all the way.

We ordered tickets right away. My husband had to work so Dory-the-babysitter packed up the car, the boys and me and plowed for hours through a snowstorm, catching the train just before it departed. The photo shows me with the boys inside the hut at the North Pole, roughly six hours after I finished my first chemo session.

Every year, big-hearted friends from our church arrange a Polar Express weekend trip and, every year since 2008, we have been lucky enough to be invited to join their family. They are like a roving party, and my kids look forward our yearly Polar Express experience as much as they look forward to Christmas itself.

This is us, this year on the train:

I look back and remember that first time on the Polar Express, not sure what we could look forward to but knowing that we could have a good time that night. I am simply gleeful that I get to do it all again!

We needed help from Dory to make it through that first weekend, and continue to rely on help from others, to various degrees and in various ways.

Thank you for being part of all that, for helping us to make wonderful memories, to be together as a family, to be with friends and to experience joy and love.

Blessings during this season and always,
Marie

One day, one moment, one prayer at a time

Your attitude, positive thoughts and prayers impact my life in a huge way, as I was reminded this past weekend.

Last week’s chemo went as chemo goes, bringing many of the usual side effects and a few bonus surprises. Luckily, by Saturday, I was on the upswing so my husband and I took the kids to find a Christmas tree.

As we walked among the trees, I was suddenly transported back in time. Six years ago, right before Christmas, I was diagnosed with cancer, healing from surgery (and sepsis) and about to start chemotherapy for the first time. Not only did the diagnosis unsettle everything I thought to be true in my life (i.e., that I could take good health for granted and actually make plans for the future), the treatment schedule upended our personal plans to spend the holidays with my family in Pittsburgh. In addition, I had already shipped all the gifts “from Santa” to Pittsburgh, and I was too overwhelmed to shop again for our one- and four-year-old boys, both of whom still enthusiastically believed in Santa Claus. I feared that would be my last Christmas with them, and it looked like it might be a disappointment all around.

But on this day, in 2013, wandering among the trees in the city lot, listening to my boys yell happily to each other and watching my husband measure various balsams and firs, I felt immensely grateful to be living and making preparations to celebrate another Christmas together.

After driving our tree home, I needed a rest so we draped ourselves over the sofa and watched Frosty the Snowman. Years ago, my psyche was filled with the words “…and we’ll have some fun now before I melt away.” (You can read about that here.)

This time, despite being tired, a different set of Frosty’s words slid happily into my heart:

“I’m all livin’! I AM alive! What a neat thing to happen to a nice guy like me!”

I was feeling lighter and coming out from under the chemo cloud.

On Sunday morning, due a confluence of circumstances, I went to church without the boys, and to a Mass at a church that I didn’t plan to attend. The priest began his homily talking about his seven-year-old niece and her dying father. Not an easy topic for me, but I hung in there while he made his way to his point. After that, he began to tell a story about a “dying stage 3 colon cancer patient.”

Those words put all my cells on high alert. As a stage 4 colorectal cancer patient, I don’t think of stage 3 as dying. In fact, I know both stage 3 AND stage 4 patients who are now cancer-free, so I don’t really think of either as dying. I thanked God that my kids weren’t there to hear this.

As the priest continued speaking, I went into fight or flight.

Because I was at that Mass and that church on a fluke, and because I strongly believe in the power of coincidence, I considered staying. Maybe God had a message for me if I waited.

The instant that thought occurred to me, it felt wrong. I didn’t need to stay and absorb another negative assumption that this man had to share. I needed to leave, and leave right then. Every fiber in my body said that was the right thing to do.

Mulling over this experience afterwards, I realized that I am both accustomed to people being supportive and focusing on what is possible, and that I rely on it. I can’t even let other viewpoints into my energy field.

Hearing those words and tone from this priest reminded me that there are still people who equate cancer with death, and I am lucky they aren’t in my circle. It reminded me that I am most fortunate to know that, not only can someone live with cancer, one can actually gain a different lease on life as well as get rid of cancer altogether. It reminded me that I am infinitely fortunate to know people who share that experience and / or perspective.

Maybe I didn’t need to hear whatever point the priest was trying to make. Maybe I was simply meant to gain a new appreciation for what is already in my life.

I thank you deeply for always infusing me with positive thoughts, energy, and prayers through your presence, emails, actions, notes and countless other connections. What we say and do can move each other in one direction or another. I feel like I am here six years later by moving one day at a time, one moment at a time, one prayer at a time. I could not do it without you and all the positive power you share. I am living. I AM alive. Thank you.

Love and blessings and all that is good,
Marie

Faith lived through family and community

I suggested to my six-year-old that Christmas is first about the birth of Jesus and second about the presents. His honest little soul responded, “Maybe for you, Mom.”

I knew how he felt as I wondered if Christmas, for me, was more about family than about the birth of Christ. Though I no longer anticipate Santa’s arrival, my anticipation for getting together with my cousins is just as strong.

My cousins and I grew up almost as siblings. Some of us went to the same grade school. We lived walking distance from one another in Pittsburgh. We got together for every event: Christmas, Easter, the Fourth of July, Thanksgiving, birthdays, school plays, athletic events, Sunday dinner.

Of the almost weekly gatherings, Christmas was the most special. Our traditions pre-date my birth. For over 40 years, my Sicilian grandmother presided over her four children, their spouses and her eleven grandchildren. We gathered in one home or another, with, of course, an abundance of food. While our parents had loud and lively discussions (much of it in Italian-accented English), my cousin Kathy led us younger children in creating a play or musical that we would perform for the adults later in the evening. Opening our gifts, one at a time, took forever, with Grandma getting the most (one from each of us!). We always concluded the evening by singing a lively refrain of “We wish you a Merry Christmas.”

Over time, the make-up of our group changed. We went to college and brought home friends who had nowhere else to go. Most of us got married and some of us had children. Some dear relatives passed away. For a few years, it wasn’t certain whether our Christmas gatherings would continue. Some had jobs that required them to work on Christmas day. Others felt the pull of spending Christmas with our in-laws. We tried different venues, one year holding the party in a function room to minimize the work, but afterwards we all agreed that it felt too impersonal.  We tried breaking up into our now-larger nuclear families to start new traditions, but we missed our time together.

Eventually, we settled into the tradition that I now anticipate each year. My cousin Cathy hosts the party at her home. (Yes, we have two cousin C/Kathy’s, plus two Tony’s and one Antonio.) This year, 29 of us gathered to eat our traditional sausage and peppers (which were the best ever this year), ham, chicken, lasagna, potatoes, salad, green beans and whatever vegetarian dishes Cyndi and I bring. Terry shares her amazing cookies alongside the other deserts. We reconnect through recounting stories of our lives and through building memories together as events unfold during the celebration.

Though the children no longer craft a performance for the adults, my children eagerly look forward to what they know in their soul is a special and fun time with their Pittsburgh cousins.  They play Wii and other video games, dance along to musical dance shows, and challenge each other to daring gymnastics feats.

Christmas day was perfect and wonderful though nowhere did we explicitly talk about God. We didn’t tell the story of Jesus’s birth. We didn’t even say grace out loud as we spread all over the house eating our dinner. As important as family is, did I lose the meaning of Christmas?

Then I read this article from the NYTimes (which has nothing to do with Christmas) and realized that two statements from that article linked my beliefs and my actions:

I really do believe that God enters the world through us.

God came to earth through the birth of Jesus, but he also appears through each of us, every moment of every day, as we show this in our actions and interactions.

Faith is lived in family and community, and God is experienced in family and community.

Gathering with those we love is faith lived.

I experience my faith and God in the richness of connections with my family and my community when…

• my heart expands as I treasure the stories shared
• I feel part of something larger than myself as I am woven into the memories I get to create with others.
• I am honored to bear witness to everyday events – the laughter, frustrations, sorrow, puzzlement, growth, peace, joy – anything that someone is willing and brave enough to share with me.

It takes a leap of faith to open up in this way, just as I take a leap of faith when I open myself to share with you.

Like faith, our interpersonal connections defy logic and explicit description, and they are larger than anything we can create on our own. And this feels like God to me.

Thank you for allowing me to experience God and my faith through my connections with you, and thank you for sharing all that with me. And anytime that you are with even one other person (or more), I hope you are able to feel that as well.

Merry Christmas, love and blessings during this very holy season,

Marie