Starting new chemo on Tuesday

Well, last week was a little draining. A trip to the ER on Sunday, a day surgery on Thursday, and in between, the election.

But wait, there’s more! I start a new chemo on Tuesday (FOLFOX, for those familiar). Not my favorite chemo cocktail but here’s hoping that it works. I’ve had four weeks off chemo, which usually would be refreshing but this time was filled with hospital visits, so didn’t feel so much like a holiday. We begin again!

Thank you so much for your prayers and positive thoughts last week. I know it pulled me through. And thank you for your continued support.

Love and blessings,
Marie

Different ways to be with pain and potential final moments

Among the many recent articles on the earthquake in Nepal, this quote in the Washington Post by a climber (Steve Watkins, age 38) stuck with me:

He ran to his tent, convinced he was in his final moments, muttering what he feared were his final thoughts to any higher power that was with him high on the mountain. “So it ends now. Thank you for my life. I don’t know what I did to deserve such a wonderful life, but thank you. Thank you, thank you.”

While I think of myself as a pretty grateful person, when I am in pain so bad that I just want to die, I don’t typically think “thank you.” I mostly think “This is SO NOT FUN.”

I have been saying that more and more frequently on this chemo break. I’ve had pain that, during the day. makes it hard for me to stand for very long and, at night, leaves me unable to sleep. The pain pops up on multiple spots of my body and it is sort of like managing toddlers: You get one spot calm and happy then another needs attention, making it impossible to concentrate on anything else.

I so appreciate your prayers and positive thoughts for my health and well-being, as I have needed them these past weeks.

On the plus side, I appreciate that I can think more clearly, that I can often eat (and food tastes good!) and that I am more available for the kids. I was grateful to sob my way through a Mother’s Day event at my son’s school and celebrate his First Communion (with A LOT of help from my parents and sister –they throw a good party!).

Speaking of my son – he has switched from gymnastics to baseball, and I appreciate being able to watch his games.

I love watching Little League games. I love having a reason to spend that much time outside. I love watching the kids when they play and when they are bored. I love meeting up with the other parents and chatting. I love that the slow pace of the game sets a slow tone for the spectators. I love being forced to sit and simply be present.

During the first three days, we had one hour of tryouts, two hours of practice, a two-hour scrimmage, and, finally, his first game.

At this time, it was late April and the spring weather had not yet arrived. I wrapped myself in a sweater and jacket. In my arms, I juggled sweatshirts and jackets for my kids, blankets for me to sit upon, sandwiches in case anyone was hungry, and a bottle of water for me. Under all this, I had the dog on a leash around my wrist.

I set up shop by the third base line and settled in. Normally – or maybe I should say, formerly – at these kinds of events, I would wander around to reconnect with old friends and meet new ones. But I didn’t have that kind of energy, so I sat, happy when people came to me. And when I was alone, I got a chance to observe.

I also got time to feel my aches and pains, which range from hovering in the background to all-consuming. I sat in my own shell and missed the person I want to be at these games.

A man’s cheering voice snapped me out of my interior world.

“You got this, Henry!”

Deep and low but not too low, with an encouraging tone, it was pleasant to listen to. The voice easily carried across the field as he continued to cheer on the pitcher and fielders.

“Good catch!”

“Throw to first!”

I couldn’t make out who it was, but his voice conveyed pure joy, his love of the game and of the boys playing it.

Eventually, our team got three outs and the boys changed sides. The batters ran into the field and the fielders ran toward their dugout. At the same time, the coaches moved their positions on the field and a young man who looked to be in his late 20’s rode across the field in a wheelchair. He would occasionally pop up on two wheels or stop for a moment to chat briefly with someone. He eventually positioned himself just past third base, right in front of me, so I realized that he was the third base coach for the other team.

When he started to cheer on the batters, I recognized his voice.

“You’re a hitter!” he would yell with a joyful grin. “Just wait for the right pitch!”

As he cheered for his players, he restlessly rolled his wheelchair around, back and forth. From time to time, he would lift the front wheels into the air, and then spin the wheelchair a bit to one side and then the other.

I assume that he did not feel 100% like himself. And, I wondered, how does he manage to exude such joy?

As I sat there with my insides pulling and tugging and not feeling 100% myself, I was lifted by some of this man’s wonderful energy. I was definitely inspired by his way of living, and I think of that now when I am with my kids and feeling crappy: How can I instead live the moment with joy, despite how I feel? I feel so grateful that he crossed my path.

In the meantime, I’m moving up my CT scan. I was supposed to get scanned at the end of the month, but I want to find out what is going on in there. So my appointment is now on Tuesday, May 12 at 11:30 and I meet with the doctor later that day to discuss the results. Prayers and positive thoughts welcome!

Thank you so very much. I hope that, whatever you are dealing with, the joy shines through. Or maybe the gratitude. Or if your preferred approach is “WTF?”, then good for you for being present and dealing with it in your own authentic way!

With love and blessings,
Marie

Inspiration and support

Health Story Collaborative hosts cool events where patients of all kinds get to tell their stories. I spoke at one event, and afterward, I walked on air and could feel a change in the vibration of my body.

Following my magnificent experience, I was honored to host one of these discussions in my home for a woman named Liz who was diagnosed with ovarian cancer. I didn’t know Liz – she was recommended by Health Story Collaborative – but she and her friends had wonderful energy and sharing her story in that way was as powerful for her as mine was for me.

Though Liz and I had much in common (similar in age, children of the same age, attitudes toward life, cancer diagnosis….), we didn’t stay in touch. Life gets busy, we all have our routines, you have to prioritize your limited energy during treatments, and we each have plenty of friends we already don’t get to see as often as we would like.

This week, I actively wondered about Liz and how she was doing. I didn’t even remember her last name to try and find her email address in my list of contacts, and contacting Health Story Collaborative to find her felt like adding another thing on my list of things to do, so I didn’t follow through. Liz’s well-being remained an unanswered question.

In the meantime, here is how my chemo holiday has progressing.

First and foremost – I love not doing chemo! I love being free from tubes, I love not carrying vomit bags with me everywhere, and I love having a clearer mind. I love having more than two weeks each month when I can do things that one needs and wants to do in life (grocery shop, hair and dentist appointments, kids’ school events, etc.).

Occasionally, I think about my CT scan results. The doctors saw some fluid near the anastomosis (surgical connection of two parts of my intestines that aren’t normally connected). The fluid can be simply nothing or it could mean that the Avastin (which has been working so well for me) may be doing damage to the stitching there. If there is damage, it is inoperable, and a tear in that area would likely be fatal. And not instantly fatal – it would more likely involve a long hospital stay and decline. For the record, that is not my preferred way to die. So if that were the case, that would mean no more Avastin.

I generally don’t look ahead; I mostly assume we will handle whatever comes up when it arises. But when I think about this particular potential conversation with my doctor, I do remind myself that if Avastin is no longer an option, I am lucky to have other options when it comes to chemo drugs. There is another drug, Erbitux, that many friends have taken and one friend is currently taking with successful results. The most notable side effect is a major skin reaction. It looks like you have acne or a red rash all over your body, which is usually uncomfortable. Given how sensitive my skin is on a good day (for example, I have to watch what kind of Band-Aid I use, or which tape they use on my skin at the hospital), I fear that my skin will be especially sensitive to this drug. Besides that, it is unsightly. I kind of like not “looking” like a cancer patient.

Mostly, I try to stay focused on the present. Admittedly, that is easier to do when I am feeling well. The snow is gone and while it has been chilly, the sun is starting to shine, so that helps.

However, I’ve also had many days filled with pain that make it hard to move or even stand, and nights where the pain keeps me from sleeping. Strung back-to-back for over a week, these days feel endless and discouraging.

I realized that I rely on living my life from miracle to miracle and I wasn’t noticing anything miraculous popping up, so that was bringing me down as well.

During that time, I did what I could. I booked more acupuncture. Tom Tam loaned me this device to wear to help with my pain. (I was skeptical, but it truly helped enough to get me up and moving.) I scheduled regular bodywork appointments with a local guru. I resumed calls with my energy worker. I did a reiki session that enabled me to sleep. I read funny novels and watched comedy clips on YouTube. I reframed any negative thoughts that made their way into my psyche.

Absentmindedly deleting junk emails this week, I noticed one about a new drug approved by the FDA, ramucirumab (brand name Cyramza®)  targeted for stage 4 cancer patients. It works similarly to Erbitux but with different side effects. Ah, a potential option if I need it. Thank you God. I felt myself exhale.

Then, I went into Dana-Farber for a port flush. (They need to periodically access the port in my chest and flush it with saline to keep it clear and useful.)

I signed in and the woman behind the counter gave me the plastic bracelet with my name, birthdate, and medical ID number. I hate that bracelet and all that it stands for. The port flush went well and, immediately afterwards, I walked through the waiting room, straight to the trash can, and pulled the plastic bracelet off my wrist.

As I held it over the trash can, a woman stopped and said to me, “You might not….”

Immediately defensive thoughts went flying through my mind, such as, Don’t tell me that I might not want to throw this away. Don’t tell me that I might need this for discounted parking. I just want to be rid of this thing…

Thankfully, she couldn’t hear my thoughts, so she continued on, uninterrupted (as far as she knew), “…remember me. I did a talk at your house….”

OH MY GOSH. It was LIZ! I just LOVE it when questions are answered. I didn’t know where to start reconnecting with her – there were so many places to begin!

Well, we were both alive, which seems to be everyone’s first question about cancer patients. She looked good and energetic and still had the cynical edge that made me laugh.

She was back on chemo and today was a treatment day. We talked about parenting through treatments and taking care of ourselves and living with one foot on the path of “I will heal” and the other on the path of “What if I don’t.” We talked about Kripalu. We talked about Tong Ren and Tom Tam and, in that crowded waiting room, I lifted my shirt to show her the device he developed that helps me with pain. (You should know that lifting my shirt also exposes my colostomy bag, but that paled against my excitement of seeing her and sharing something that might help. Besides, in that room, people are dealing with issues larger than the horror of glimpsing someone else’s colostomy bag.)

Running into Liz at that place and time was like a Divine Intervention. She told me that she really needed to see me at that moment, and I couldn’t explain how lifted I was to see her. It helped to restore my faith in the connectedness and purpose of the universe. Her presence helped me to feel like God was listening to my questions and would provide the answers if I can just be patient.

We exchanged email addresses again and while I am not sure how we will stay in touch, I know that our hearts are connected enough to bring us together and inspire each other as  we move forward.

Thank you for always being there to inspire and support me. I appreciate your prayers as much if not even more during this break, as it can be scary and painful but also, bearable, with your friendship and support.

Blessings and love and miracles,
Marie

CT scan stable – let the holiday officially begin!

It was a big day of meetings but the bottom line is that my most recent CT scan was stable with respect to the prior scan, so I will be taking a chemo holiday. Woo hoo!

The scan showed one thing that was “curious,” so we are running it by my incredibly gifted surgeon for her opinion. Regardless, it is a “watch and wait” thing, not something that we could or would act on right now anyway, so that will just be put onto the back burner for now. In the meantime, I can work on it energetically. My next scan is scheduled for the end of May.

Thank you for your support and prayers, your confidence and humor, your upbeat presence. You are amazing. I hope you know that.

Blessings and love,
Marie

A day in the life

We are home from vacation and the kids started summer camp. This particular week, one child attends a camp in Cambridge and the other attends a camp in Newton. We live in Cambridge, and Newton is not far, but both camps are on the OPPOSITE end of the close side of town.

In addition, both camps start at 9 a.m.

I love logistical problems and this is how we solved this one.

7:40 a.m. Leave the house for an 8:00 drop-off for the Cambridge camp. We drive 20 minutes, park, then walk him to the building. Return to the car by 8:20.

8:20 a.m. Start the rush-hour, 50-minute drive to Newton. Drop off around 9:00 (sometimes 9:10).

9:00 a.m. Drive home, arriving around 9:40.

Basically, driving the kids to camp is a two-hour gig.

Their pick-ups are at 3:30 and 5:00, so I leave the house around 2:30 and make the loop in reverse, arriving home around 6 p.m.

I honestly don’t mind all the driving. It is only one week. Besides, it is what I am supposed to be doing. And I can do it! It feels like a dance.

However, even on my chemo holiday, health challenges interrupt my week. For example, on Monday, I had debilitating shoulder pain (that is now thankfully gone). And I have had a pain in my leg for the past three weeks, plus the pains in my abdomen. Though I am not fully functioning all the time, I can do a lot and try to maintain some degree of normalcy and routine for our kids.

My CT scan is scheduled for Friday and causes me to miss the end-of-camp shows. Bummer, but I think the kids will be okay. I called the hospital to ask them to scan my leg while they were scanning my chest, abs and pelvis.

“Come in immediately for an ultrasound. It might be a blood clot. I got you in for a 1:45 ultrasound. It will take 30 minutes, then the doctor will see you at 3:00. Be prepared to stay in case they find a blood clot.”

Life upended and I tried to stay calm. A 1:45 ultrasound works if they run on time. But three o’clock is right in the middle of my pick-up rounds. Plus, be prepared to stay? What does that mean for childcare when you have kids?

As I said, I love a good logistical challenge, but I couldn’t think straight and this threw me into a tailspin. I looked at the clock. It was almost noon. I didn’t have a lot of time to figure this out.

A friend in California offered suggestions via text messages, though I couldn’t see any solutions I liked. A few lucky friends happened to email me at the time and I complained to them. They offered to help but honestly, who can drop their plans at the last minute for a multi-hour, traffic-laden gig for kids who will be understandably upset about a sudden change and worried about their mom? I texted a neighbor to see if she could take at least one boy after camp, but there was still the pickup puzzle.

Eventually, I decided to scoop up the Newton camper on my way to the ultrasound (though it wasn’t exactly “on my way”) and take him with me. The au pair, who was out for the day, could be home in time to pick up the Cambridge camper at 5:00.

My son and I arrived 15 minutes late for the scan, and the folks at Dana Farber could not have been nicer. We were admitted right away, and the tech rubbed the gel on my leg.

As I lay on the table, my phone rang. It was the director of the Cambridge camp. Our son wasn’t feeling well and could we pick him up?

I thought I was calm, but I could again feel my life unravel as I called the au pair. No answer, so I left a message. Argh. Hopefully she was on the T (Boston subway), on her way home earlier than planned, but I didn’t know. As the tech slathered more gel on my leg and pressed down with the ultrasound probe, I took a deep breath and called another friend. Even though driving in Cambridge traffic is her own personal version of hell, she agreed to be on standby.

Just then, the au pair called. She had indeed been on the T when I rang, and was now almost home. She could pick up the Cambridge camper without delay.

The heavens opened, light appeared and angels sang.

About 10 minutes later, the tech told me that there was no blood clot.

And just like that, life returned to normal.

I would love to have no glitches in my life, especially no health glitches. I would love for the boys to have some consistency and to feel like they can rely on me, that I am there for them. I know that we are doing the best we can, and I am grateful to God for helping me through these moments, even when I forget to rely on that. Now, if I can just trust during that space between the moment when life turns upsidedown, and the moment it is righted again….

I hope that when you are in that blank space, between a problem arising and a solution arising, that you feel taken care of and can trust that it will all be okay.

Much love,
Marie

 

Living on the Edge

Taking a chemo holiday is a bit scary, with every abdominal twinge and pain making me wonder if this was a good idea.

But since I am indeed on a chemo holiday and the kids are out of school, we decided to take an actual holiday and travel to Moab, UT to visit Arches National Park and the surrounding area.

The massive red rocks, coupled with the fast-moving Colorado River, quickly changed our relationship to the earth.

Mesa and Colorado River behind Sorrel River Ranch in Moab, UT

Our city-slicker, technology-obsessed family became excited about doing anything outdoors: rafting on the river, rock climbing, horseback riding, hiking the rocky hills, picnicking in the National Parks, sitting and breathing the Utah air.

Riding horses

Hiking in Moab, UT

We became calmer, more grounded and less stressed out.

I felt blessed to be able participate in almost every activity. Since the early 1990’s, I dreamed of rafting and camping on the Colorado River. We only did the rafting part, but it nonetheless felt like a dream come true.

Rafting on the Colorado River

On another day, I was amazed to find myself actually climbing an OUTDOOR rock face, something I never thought I would experience!

Marie climbing Ice Cream Parlor

From city living, our family is accustomed to signs and fences letting us know where we can go for each activity. You walk on the path, not on the grass. You play in the backyard or playground, but not on private property. You climb at the climbing gym. Buildings are everywhere, limiting where you can toss a Frisbee, catch a ball or watch the sunrise. Fences keep us safely on the right side of danger.

However, in this area of Utah, the entire outdoors feels like a playground, with the rules set by nature rather than humans. We can walk or hike anywhere, while we respect and not trample delicate wildlife. We can ride the rapids but the water will toss our raft while we go with the flow and deal with the outcome. We can stand in one spot and turn around 360 degrees without seeing a manmade structure. We can peer into canyons without a fence to safely hold us.

Canyonlands National ParkThough the landscape is breathtaking, the freedom can be frightening. As we watched the boys run and play alongside the Colorado River, I tried to focus on their fun rather than obsess over the potentially precipitous drop into the water. However, when we visited Canyonlands National Park and its canyons, I held the kids tightly while we stood a safe distance from the edge and its steep drop.

Not us:

Not us.

Not us.

Us:

In Canyonlands National Park (Island in the Sky)

In Canyonlands National Park (Island in the Sky)

Notice my tense look and tight grip on the boys. From our vantage point, we probably missed a more encompassing view but I was not able to stomach the risk of standing on the edge.

On this chemo holiday, I am keenly aware of the contrast between staying safe and living on the edge. When I was initially diagnosed, over six years ago, I was told what to do – what surgery I needed, which drugs I would be taking, how much and for how long – and I followed those instructions. As time passed and I thankfully did better than expected, I sort of entered the Wild West of treatment, where I have more input and freedom around my treatment choices. I discuss chemotherapy dosage and schedule with my doctors. I decide what nausea meds to take. I get to choose when to take a break from treatments.

I have some really good guides to help me make my decisions. I try to remember that, even if this road does not feel well-worn, it has indeed been traveled before and is not fully unchartered territory.

Again, all this freedom can feel scary. When I feel pings and pinches and pains in my abdomen, I worry that I am stepping too close to the edge by taking this break.

But I am here. I remain conscious that a misstep can preclude a big drop and fatal fall, but I remind myself to concentrate on the view and how grateful I am to be part of it. And when I look closely, I can see that life blooms in many places, often where I least expect it.

Desert flower Cactus in bloom

Love, beauty and blessings,
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