Sometimes, I just can’t make lemonade

I had chemo on Tuesday and, as usual, started vomiting even before the show got started. As usual, they administered IV anti-nausea drugs and knocked me out. Typically, once I get home, I continue to feel crappy until Thursday, when my chemo pump is done and I return to Dana Farber to have it disconnected. Then I return home, shower and rest and recuperate.

However, this week, once home on Tuesday, I couldn’t stop vomiting. I couldn’t take a sip of water without it coming back up. I couldn’t take any meds by mouth (because the water triggered vomiting). There is one pill that I could put under my tongue, but simply looking at it made me vomit. I could barely (and only sometimes) hold down small amounts of ice chips.

This continued throughout Wednesday, day and night. My skin smelled like chemo and, no matter how much I brushed, my teeth felt gross. I needed a change of scenery so, on Thursday morning went downstairs, only to get sick again in the closest bathroom. Unfortunately, that bathroom is used by the boys and their friends. Being on that bathroom floor was enough to trigger more vomiting, so I headed back upstairs.

I figured that I would feel better once I got disconnected from chemo later that day, but no. I vomited at Dana Farber before the disconnect as well as after, then continued after I arrived home. I showered, changed the sheets and aired out the bedroom. I tried moving around. Nothing made a difference.

I couldn’t figure out what I was supposed to do with all this suffering. I didn’t understand the reason or the purpose. I considered stopping chemo for good, but I also know that I will just be in a different kind of pain if I do that. No road ahead looked good. I prayed for someone to come and shoot me dead.

On Friday, the vomit-fest continued. I couldn’t get through my shower without getting sick and then spent most of the day in bed. I was so tired of living in my bedroom.

By now, vomiting was all I could think about. It felt like I was drowning in thoughts of what triggered it, trying to avoid it happening, and having it actually happen. These thoughts consumed every minute. I tried to be grateful that I was able to do chemo at all. I tried to be grateful that I was at home and not in the hospital. I tried to think of something other than chemo and sickness, but this now appeared to be my entire reality.

One of my coping mechanisms is to focus on the present, so late on Friday night, I practiced that. I wanted to focus on something outside of myself, outside of my room. I could hear, through my open window, the crickets chirping and, beyond that, the cars on the busy road near our house. I focused on those cars – were they a continuous stream? Were there breaks in between? Did I hear any trucks?

Suddenly I was about 8 years old, spending the night at my grandparents’ home. I slept in the front bedroom facing the busy street on which they lived. When I woke in the middle of the night, I loved seeing the glow of the streetlights and hearing the pattern of cars as they drove by. Sometimes, I would scramble to the foot of the bed and look out the window, watching the cars as they passed. At that time of night, there were only one, two, or maybe three cars at the same time, and I got to witness it.

This memory brought back all the wonderful feelings I had about staying with my grandparents and made me feel better. Throughout the night, each time I got nauseous, I would focus on the moment, listen to the cars and before long, find myself back at my grandparents’ home. Did it work every time? No. But it worked enough so that I could find some moments of peace.

Eventually, I felt well enough to page through Facebook. Friends of mine posted that they were in Gethsemane, and they both posted this photo:

“My Father, if it be possible, let this cup pass from me; nevertheless not as I will, but as Thou wilt.” and “…My Father, I do not understand You, but I trust You.”

I don’t want to walk this path. Not at all. But I suppose this is the path in front of me. I don’t have to be happy about it, but I do need to follow it.

I hope that, if you are mired in something that you cannot see or feel your way out of, that you can find an island of peace in your heart, and that a message comes to you from somewhere, somehow, to provide support and a little opening for the light to get in.

Love,
Marie

 

I don’t always get what I ask for, or even what I think I need

Thank you for your prayers and positive thoughts. In countless ways, they make my life better. I truly feel so fortunate every single day to wake up and get out of bed, and I know that your actions and energies are the driving force.

That is not to say life is without challenges. For example, every month, I order colostomy supplies. The system I use comes in two parts: the pouch (in boxes of 10) and the wafer (in boxes of 5). The pouch attaches to the wafer so, ideally, I need the same number of pouches and wafers.

In the past couple of months, some glitch in the ordering process ships 10 pouches and 20 wafers to me. To fix this, I need to call customer service, and every month, our conversations start something like this:

Me: Can you check my order? What should I be getting?

Customer Service Rep: You are getting 10 pouches and 20 wafers.

Me: Can I get 20 pouches and 20 wafers?

CSR: Probably not.

At this point, my frustration level jumps, and if I go with it, the conversation gets more confrontational and less productive. And the following month, I again get 10 pouches and 20 wafers.

On this particular day, a friend posted this clip from The Ellen Show:

http://www.ellentv.com/videos/0-any43oh1/

It gave me a good laugh, AND I particularly admired how the customers went fully with the flow of the craziness in the transaction. I know that I would have been frustrated working with someone like that and truly annoyed at not being able to get my order.

They gave their donut order and, short of jumping the counter and getting the donuts themselves, they really had no control over what they actually got. Just like I cannot fulfill the order for my colostomy supplies: I have to rely on the person helping me to give me what I ask for. Being frustrated and annoyed with them only hurts me.

I tried to remember that, like the clerk at the counter, we all have voices in our head, telling us what to say and even making up stories about the other person. Often, the voice appears to be nonsensical to others. So when I contacted the customer service rep this month, I tried to keep that in mind. (Well, mostly, I assumed that she had the nonsensical voice and I was to go with the flow. I still assumed my voice was right.)

We’ll see next month if it really impacted my order, and either way, I’ll try to keep a sense of humor about whatever I get. After all, much of my life is what I ordered, and much is most certainly not.

Still, I hope you get the wonderful things you want in your life, or something even better!

Love,
Marie

Moments

Thank you for the prayers and positive thoughts – they really help to get me through chemo and then rebound into life again. Thank you for the difference you make in my life.

My life lately consists of driving the kids here and there, driving to the grocery store, and driving to the occasional outing. It can feel routine.

But then, there are moments. Like:

• Walking down the street on a beautiful summer evening, suddenly realizing that I can hear our neighbor (an acclaimed classical pianist) playing piano through her open window.
• Noticing the unexpected. For example: I sent Anne a thank you note on this stationery:

 And she sent it back to me.

At first I was simply puzzled and amused that she would do that. Then I saw that she included a photo of her own, along with the note: “This photo is of my favorite place on earth!”

(The original was more in focus, but notice the beach umbrellas and the blue and white striped chairs.)

• Driving home from church with my mom and talking about Jill’s surprise birthday party at the Red Sox game (which occurred well over a year ago) when I hear a honk from the car behind me. I look, and someone is waving – it is Jill. She even got out of the car at the next traffic light to say hello!

These are fabulous in the moment, but then…each time I replay them in my heart, I can get the same joy, wonder, laughter and amazement.

Thank you for creating so many of these moments, for me and for others. I hope you are feeling the ones in your life that make you laugh out loud, smile inside, love bigger and pause in wonder.

Love,
Marie

 

 

Guest blog post!

Pamela Post-Ferrante generously invited me to be a guest blogger on her site. Pamela is the author of the beautiful book Writing & Healing: A Mindful Guide for Cancer Survivors.

I wrote about connections, with many of you in my heart, though it started with one close group. Here is the link to the post:

http://www.writingandhealing.com/the-connections-that-carry-us/

Enjoy.

With love,
Marie

 

Managing pain

About a week ago, a dear friend was experiencing intense pain and asked me how I handle pain. I shared two of my approaches with her in an email. She suggested that I share them on my blog in case others can benefit, but I demurred.

A few days later, I received an email with this message:

You will have pain

John 16:20

That sounds ominous but it was part of a larger email – not quite so awful as it would be as a standalone message!

Today, a friend sent this to me:

(Cancer) really was a teacher for me about how to deal with pain. I had this kind of vision when I was going through a procedure, and it was an image of a tree falling into an iced-over stream. The tree shattered and the ice cracked. Then I had the same immediate scene replay itself except that it was springtime. And now the tree fell into the water. Even though it made a huge splash, the water flowed around it. So that was an immediate instruction to me on how to meet pain and difficulty. To let it enter me but to be soft enough to flow around it.

-Mark Nepo

I related to his experience and decided, okay, I will share my approach. I hope that it helps you if you need it, though no guarantees, of course.

Going through cancer gives me an opportunity to experience all kinds of pain. Physical pain caused surgery or by tumor or by who-knows-what else. The emotional pain that starts with the worry before the diagnosis and morphs from there.

My tools for dealing with emotional pain are limited primarily to repressing it or moving through it. So let’s just not look there right now.

As for physical pain, I tried, among other things, avoidance and willing it away. I tried bracing myself and steeling myself through it. However, none of those helped with intense pain.

My aversion to painkillers has led me to develop more tools for dealing with pain.

For example, I frequently have intestinal blockages that causes waves of pain. I used to experience the wave of pain, and when the intense part passed, I would brace myself for the next wave. I was tense and worried and just wanted it all to go completely away.

One day, on the theory that what you focus on will grow, I decided to try and focus, not on the waves of pain, but on the calmer spaces between the waves. The spaces in between were not pain-free, but they were far less intense. Soon I realized that I started to see the waves of pain as periods of peace interrupted by pain that would pass. It was still painful but made it much more bearable.

At another point, I attended a workshop at Kripalu called The Psychology of Symptoms, developed and lead by Douglas Brady. There, I learned to have a different relationship with physical pain and to sit with it. I know – doesn’t sound like fun, but it works for me.

These are the techniques I will attempt to summarize here.

For me, this works best if I start in a calm place – either from a space between bouts of pain, or from a brief meditation. If the pain is a familiar one, this works best if I start when I feel it coming on, before it gets into full force. But you can start from wherever you are.

Pain often radiates, so the first step is to find the focal point of the pain, the epicenter. Picture it in your mind’s eye. Picture space around it. Feel that space. Let the pain exist there for a moment.

Look at it. What color(s) is it? What shape? Is it moving / pulsing / breathing? Is it smooth or ragged? Simply recognize any characteristics it shows you. Notice how those characteristics change as you are watching.

When you are ready, notice if it is carrying any emotions. Does it bring any emotions to mind?

Does the pain correspond to anything you are noticing about it? For example, does it get jagged when the pain is more intense? Does it turn red? If this brings you more into feeling the pain than observing it, then skip this one. But sometimes, you can do this by feeling the pain without being crippled by it.

When you are ready, ask it any questions that come to mind, such as What do you need? Why are you here?

As you do this, continue to notice its physical characteristics and how they morph.

When you (and it) are ready, see if you can go a little bit inside the shape. What do you see there? You can go as far into the center as you are comfortable.

Continue to do this for as long as you can.

When you are done, just breathe. Fill the space inside with white or golden light. Keep breathing into the space.

As my family can attest, it isn’t that pain doesn’t hurt me, that I can magically make it go away. But practicing these when I need them helps me to meet the pain and difficulty with less resistance and to continue to flow around it.

I hope that, if you try this, it helps you. But mostly, I hope you don’t need it.

Love,
Marie

Learning From Others

When I look around, I see so many wonderful qualities in others that I try to incorporate into my own self.

For example, my friend Angela once said, “People pray for strength. I pray that bad (stuff) doesn’t happen to me.”

I loved that. I am inspired by her attitude. While I can’t become Angela, I try to incorporate her approach into my life view.

Last Monday, my mother-in-law (a surfer) took my younger son surfing, and he wanted me to go along and watch. I was thrilled to be invited, and beyond excited that I could actually go.

This is not his favorite video from the day, but it is one of mine.

You can briefly see him paddling, then popping up onto the board. He keeps his balance, gives two thumbs up and then, at the end, falls off the board. But my favorite part – he emerges all smiles and heads back out for another go.

When things don’t go as I plan, hope or expect, I don’t pop right back up and I certainly don’t rebound with big smiles. Mostly, I get annoyed and try to force it to be my way.

It is easy for me to say, “But THIS (whatever “this” is that I am trying to do) is more important / has greater consequences, etc.” than surfing.

Then I remember a later run he did, where he fell off the surfboard in a wave and, when he got out, told me, “That was really scary. It looked like the fin was coming right into my face.” That would be an important and big consequence. But even following that near-hit, he wasn’t discouraged. His smiles quickly returned and, after a brief break, ran back into the water with his surfboard.

In the meantime, the opening between heaven and earth continues to draw the people I love. This past week, my “chemo buddy” Julie said good-bye to this world and hello to the next.

Julie and I were diagnosed within months of each other, then connected through mutual friends.

We had much in common, including being close in age. We discussed treatments and side effects as well as mothering two young children and having a good marriage in the midst of all this. We eventually had the same oncologist and sometimes even the same chemo days.

As anyone with cancer knows, disease path is variable. Initially, mine looked curable and hers looked quite advanced. In fact, the doctors didn’t give her much time. But 6½ years after her diagnosis, she was still here, a testament to her strong will to endure incredibly difficult medical treatments and her strong faith in Jesus Christ. In fact, her memorial service emphasized her love and devotion to Jesus, which was present in everything she did.

Me, I sort of have an arm’s length relationship to Jesus. I have lots of questions about where he fits into the whole picture. I’m totally into the saints and spirit entities, the Holy Spirit seems to be everywhere in my life, and I’m crazy about God. So all that felt like enough for me.

But I was inspired by Julie and her service, and I decided to be open to the possibility. What do I need to do, to have what she had?

Of course, if you ask a question, the answer appears. The next day, I went to Mass and got this from the Gospel reading:

Then Jesus said to his disciples, “Whoever wishes to come after me must deny himself, take up his cross, and follow me.”
Matthew 16:24

Hmmm, that answer came faster than I expected. This path is certainly not what I would have chosen for myself, and I resisted for a long time. But now I think I understand that my life might not be what I set out to create. All I can do is step into what is in front of me, even if it often feels like this:

I try to incorporate Angela’s ability to aim high and focus on what I want. When it is apparent that I won’t be getting my way, then I hope I can let go and ride whatever wave is carrying me. And if I fall, I want to emerge smiling and ready to go again. And maybe, just maybe, like Julie, I can follow his lead, even if I can’t figure it out.

Thank you for always encouraging me – it lifts me up and gets me going. Thank you for being such an amazing, incredible role model in so many ways. Your life and the way you live it creates energy and more life in others and in me. I send that love and energy back out to you.

Love,
Marie