Coming from behind

My son’s baseball team primarily includes kids, like him, on the younger side who are just starting to play. The team lost the first few games that they played (since he joined – I don’t know how they did before that), sometimes with scores like 15-1.

At a recent game, they were losing 7-6 going into the bottom of the sixth inning. I felt that they kids played well and they held their own. In my mind and given their history, this was as good as it was going to get. I felt that we could end the game right then, but I’m not in charge and our team was up to bat. So I stayed to watch and the team focused on playing.

To my surprise, they made two runs! They came from behind to win, 8-7.

In other news: Chemo itself went well this week. NO VOMITING – big win there. Not even significant nausea or other unpleasantries. Yes, I set the bar low, but a day without nausea  means a good day for me. Thank you for your prayers and positive energy to that end.

However, this path is never boring and among several weird and majorly uncomfortable cancer side effects, tumor is breaking through my belly button. Yes, emerging like an alien being. As if this wasn’t freaky and distressing enough on its own, the slow tearing of my skin is incredibly painful.

This path gets discouraging and sometimes I reflect and think, well, I’ve done okay so far. Maybe this is as good as it gets.

Then I think of that Little League game and realize that sometimes, it can feel like I am losing. But, if I stay in the game and keep playing, there is always the chance of coming from behind to ultimately win.

Thanks for staying and for cheering.

Blessings and sunshine,
Marie

Broken shells

For much of my life, I operated with an exterior persona that functioned as a strong shell. At different times, this shell looked like a studious high school student, a schleppily-dressed college student, a hot girlfriend, a nerdy computer consultant, a driven business school student, a put-together management consultant, and so on.

Those roles, not how I actually felt or who I actually was, primarily dictated how I would present myself in just about any situation.

It worked well. I surrounded myself with people who had their own beautiful shells as well, and we reinforced each other’s image and our views of the world.

Every so often, though, something horrible would happen to one of them and their shell would crack open. Sometimes it was an unplanned pregnancy, or the sudden death of a loved one, or loss of a job. It might have been a really bad break-up or the need to live off the grid for awhile.

These kinds of things not only tried to get me to change how I viewed the world, but often broke my friends’ shells open. And though I felt badly for them, all I could see was the crack in their shell. I couldn’t get past that.

Of course, my own shell cracked occasionally, but I always seemed to grab a piece that felt big enough to hide behind. Then I could pretend that everything was fine while I frantically rebuilt. Likely, everyone else could see I was hiding behind part of a broken shell, but they were polite and pretended to go along with my charade, as my sense of identity and well-being was tied to that fragment of a shell.

Then events happened to completely shatter my shell, leaving only tiny pieces. None were big enough to hide behind. Even if a large piece were lying around, I didn’t have the strength to sift through the rubble to find it, much less lift and hide behind it.

Without a shell, it was just me, exposed.

I felt soft and naked and vulnerable. I was disoriented and scared, and I literally hid from people.

Then something shocking happened that still leaves me in awe: People didn’t run. They didn’t even turn their heads. They acknowledged the broken shell without pity, AND they saw me. They even saw good things in me. Often, those were the exact things that I spent a lifetime trying to hide.

Through their eyes, I started to see myself.

With their help, I learned to live without my shell.

Not that I don’t have one at all. I still don’t like people to see me when I experience the “ugly” side of cancer and cancer treatments. I don’t like them to see me drugged, or vomiting, or in pain. I don’t like people to see the changes that cancer causes in my body. I mostly only go out when I am feeling well and can present a healthy front.

However, I recently realized that I myself can now see past the cracked or broken shell of another. Through the jagged edges, their bright light shines out, so bright that I don’t even see the broken pieces.

I am so grateful to everyone who showed me, through their actions in my life, how to do this. And I am so grateful for all the beautiful people who let me be part of their lives. Thank you.

Back on chemo

Thank you for your support for my crazy day yesterday. I appreciate the prayers, positive thoughts, email messages, texts, care for my children, and the many other ways that you helped me to get through the day.

The bottom line is no surprise: the tumors have grown, so I will go back on chemo starting either this Friday or on Tuesday. But that wasn’t the hard part.

In case you want a little window into the day, I’ll share this story with you.

My schedule looked like this:

10:15 blood draw
11:30 CT scan
2:00 Palliative care appointment (to deal with the pain)
4:00 Oncology appointment (to discuss CT scan results)

Of course, things don’t run exactly on time so I basically planned to spend the day at Dana Farber.

The blood draw and scan went fine, though they always leave me feeling a bit “off.” With this “off” feeling, I made my way to palliative care. Though I had a wonderful palliative care doctor at Mass General, this was my first time at Dana Farbar palliative care.

A nurse greeted me and it was apparent that she would be taking care of me, not a doctor. Okay.

Palliative care involves a lot of listening, so I assumed that she would need to get to know me first. I outlined some aspects that I felt were important, including the fact that I have a high pain threshold and avoid pain meds as much as possible. Only in the past week, I began taking two regular strength Tylenol at night for the pain, so that I could sleep. I outlined the thinking behind my strong emotional resistance to taking painkillers.

She asked me a lot of personal questions that she read from a sheet, which I figured were required, questions such as did I ever smoke, drink, smoke pot or do heroin.

Then she asked whether I had a health care proxy, where and under what circumstances I might like to die, when was the last time I discussed this with my health care proxy, and how were my children with all this. These questions felt a bit personal, especially given that I didn’t come here to discuss that and I didn’t have a relationship with her. I also wasn’t prepared to discuss them and she did nothing to pave the way into that conversation, so my head was spinning.

But she plowed forward, and I did nothing to stop her. Her next questions revolved around how I would feel when the doctor tells me that there are no more chemo options. What?

I explained that I try to take everything one step a time, and I assume that we will handle whatever comes up.

So she asked me again.

By now, I was feeling exhausted and small. Something about her way of being made me feel really beaten down. We eventually got around to discussing painkillers. I took the narcotic prescription she gave me and walked out.

I won’t fill the prescription, because I won’t be able to take those meds. First of all, I feel like there MUST be something between regular strength Tylenol and narcotics. But also, those pills will remind me of this conversation, which is not healing.

Thankfully, the meeting with my oncologist was more upbeat. Given that he was telling me that I had tumor growth and would be going back on chemo, that is saying something!

I hope your interactions are going well today. Thank you for always lifting me through your interactions. It truly keeps me going.

Love,
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