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.

Miracles here and there

Thank you for all the prayers and energy you sent my way. I did well these two weeks – even helping out with one son’s Thanksgiving snacks at school and having a warm and fun Thanksgiving Day and weekend with family and friends. Thank you for your part in generating all these good feelings. (Chemo on Tuesday (tomorrow) so happy to get more!)

Miracles abound, and here two that appeared in the form of serendipities.

Serendipity #1:

My chemo sessions are normally scheduled to begin at 9:30 a.m. and the rhythm of our weeks rely on that. It means that I can drive my younger son to school on Tuesday morning, and that I can be disconnected from chemo before he comes home on Thursday.

However, my most recent chemo was scheduled to begin at 11:30 a.m. It meant that I would sit around all morning anticipating chemo. It meant that I wouldn’t get disconnected on Thursday until after the kids got home from school. It meant that the people who normally drive me to and fro, couldn’t. In short, it meant that I wasn’t happy with that time.

But then, at the last minute, I received an email from the leader of a mom’s group I was part of last year. One of us was going through a rough patch and could we all get together in support? Amazingly, everyone could make it – on Tuesday morning! So, that unusually late chemo time allowed me to be there for a friend. On top of that, another friend came through at the last hour with the offer to drive me, so it was fun to share that “special” time at Dana Farber with someone new.

Serendipity #2:

We had family visit over the weekend just before my most recent chemo session, including a four-year-old boy. The little boy joyfully played trains endlessly with my two sons. As you might imagine, we have quite the collection of Brio train tracks and trains and they made all kinds of loops, bridges and tunnels for the trains.

After everyone flew home on Monday, I ran an errand and parked in such a way that I had to cut through a toy store. The first thing I saw was a box of assorted Brio tracks! This family and I have an agreement to not buy gifts, so I passed it by. But I couldn’t deny the pull to buy it and eventually gave in.

On Wednesday, this little boy was at his home, miles away, playing with his train tracks and trains and asked his mom if my boys could come and visit and bring their tracks. She explained that we live too far and couldn’t just drop in, and her heart broke to see his disappointment.

Less than 20 minutes later, she noticed a package on their doorstep, containing the train tracks. Overjoyed, he is convinced they were sent by my boys in response to his request!

I hope that your requests are answered in immediate and happy ways, and that every little thing falls into place as it should.

Thank you for your prayers and positive energy for a good chemo session this week and good energy always. And may you notice your miracles!

Love,
Marie