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