A bend in the road, or a new road?

As my friend Shira used to say, “I’m not sure if this is a bend in the road, or an entirely new road.” Either way, I’m along for the ride.

These two weeks were unbelievably difficult. It was almost a week after chemo before I got out of bed and downstairs. And even then, I didn’t travel further than our back patio and just plopped myself there.

In addition to the pain of my belly button slowly ripping open, I couldn’t get clear answers on how to deal with it. I had other pain that only a bath could resolve, so I was bathing every two hours, even through the night. The abdominal tumors hurt like crazy.

And on Friday night, I had a bowel obstruction. Normally, those are painful. This was my worst yet, and left me screaming in pain.

In the midst of the intense pain, I noticed that I was screaming two things. One was, “I can’t do this anymore.”

I found my limit. I never labeled my pain a 10 because I figured that it could get worse. This was an 11. I could not imagine enduring a worse pain than this. I wasn’t even sure I could endure this.

The other thing I screamed was, “I can’t do this alone.”

And I can’t.

First and foremost, I have to acknowledge my husband, about whom I rarely write. He reliably takes care of his day job as well as taking care of the kids and me and the household. Each one of those is big in a regular life. He comes home from work, figures out a plan for dinner (on the days when someone hasn’t brought it), determines which child needs to do homework and who needs to get exercise or go to their after school sport, then helps get them both ready for bed and asleep. He makes sure that I am doing okay, have whatever it is I can eat that day, and runs to the store or pharmacy if I needs something. Beyond the logistics, we have the emotional complications for the kids, my often-intense daily needs (I do not suffer in silence), taking care of the medical side of my issues, and the random things like end-of-school events, a flat tire or the house internet going down. He doesn’t get a spare moment to himself. Without him, none of us would function. At all. He is carrying all of us every minute of the day.

Our family is grateful to the folks with whom we interact every single day, who understand what we are going through (HUGE for us, that understanding) and lighten the load in a million ways. When my son couldn’t find his gym shirt, someone kindly understood that I could not make it to the school lost and found. So they searched for me and, when they didn’t find it, they provided one for him. Huge. Friends take the boys for playdates, or show up with food or flowers or a fun story, or send an email or text at the perfect time, share their medical advice and experience….the list goes on. We are grateful for fabulous support at school, a fantastic close-knit neighborhood, family who show up when we need them without question and take over for a bit and make it look easy, and friends who are willing to go the extra mile.

Even with all this support, there are times when it seems like it is just me by myself, like Friday night when I was lying on our bathroom floor, sick beyond all belief, feeling like this has to be the end of the road and partly wishing that it was so that the suffering would be done. And from that rock bottom place, I pray for help and then am able to give thanks that I am not truly alone there, either. In those moments in the middle of the darkest night, I give thanks for my connection to God and to all of you.

If you sometimes feel alone with your problems, and even if you don’t feel like you have a relationship with any higher being, I hope you are able to tap into the connectivity of us all and draw some strength from that. In my experience, it doesn’t make the suffering go away, but it does shift my relationship to it somewhat to make me feel less alone, and I wish that for you. As well as an understanding friend.

Love and blessings,
Marie

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

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

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

Try not get worried

Over the past few days, the pain in my abdomen started getting sharper and more frequent.

Another friend passed away this weekend from cancer, triggering my concern about whether this pain was just another blip in the road or a milestone. At best, it was distracting. At worst, worrisome.

I tried to pay close attention to the pain and realized that whenever I was upset, anxious or thinking some judgmental thought, the pain got worse. I gave up judgment for Lent and thought I was doing pretty well, so those moments of awareness were particularly stabbing.

At Whole Foods this morning, still in pain, I got that shaky “off” feeling that I get sometimes, where things don’t feel like they are clicking and I feel like I need to get out of whatever physical space I am in.

I hurriedly collected and paid for my groceries, and I bagged them. I actually love bagging groceries and am pretty good at it, but not today. I wasn’t efficient and I wasn’t careful about putting my bags in the cart, leaving one precariously balanced on top.

The woman behind the register asked, “Can we help you get to the car?”

I thought, you don’t have someone to help bag. Who is going to get me to the car?

Jabbing pain.

I said, “No, thank you. I think I got it.”

Two steps later, the bag toppled onto the floor and one gallon of orange juice broke, causing a mini-flood. I stood and watched, not knowing how to stop it. It was right where the entrance and exit meet, so anyone coming into or out of the store was blocked.

The clean-up crew arrived. I apologized and rushed to get a replacement gallon. When I returned to my cart, all three workers who were cleaning the mess said to me, “It is all okay. We don’t mind doing this. We are more worried about you.”

I really needed to get out of there.

And so my day went.

A few hours later, driving to teach my religious education class of first graders, I started to panic. I promised them a pizza party today and often, with this age group, a change in routine has the potential for things to spiral out of control. Why was I even doing this? Who even cared? Was it worth the effort?

Jab. Jab. Jab.

How was I going to get through the class with this pain?

And then this song started playing:

Try not to get worried
Try not to turn onto
Problems that upset you

Oh don’t you know
Everything’s alright yes
Everything’s fine

It has been so long since I heard that song, I couldn’t even remember that it was from Jesus Christ Superstar. It was just what I needed to hear. And of course, I just love events that occur against all odds.

I got through the class. The kids were AMAZING. The person helping me said that it was the best behavior she has seen from them all year. And if the pain was there, I didn’t notice it at all during the entire hour.

Everything’s alright yes
Everything’s fine

Love,
Marie

 

 

 

 

St. Rita Returns!

St. Rita returned!

Unfortunately, so did the abdominal pains. Actually, the abdominal pains came first. They followed their usual pattern –waves of pain that intensify by the hour until it makes me scream (worrying my husband and scaring my kids), soon accompanied by violent vomiting. Not the easiest way to spend the night.

In the midst of all this, I prayed for relief. The last time this happened, I prayed to St. Rita and offered a trade: ANYTHING instead of this pain. At that instant, the pain vanished and my nose started bleeding like a faucet.

This time, I tried praying to St. Rita without trading: Just help me. But my pain remained. Maybe she answered my prayers. Maybe the answer was, “No.”

In desperation, I finally offered the same trade as last time: ANYTHING instead of this.

The good news is that the abdominal pain disappeared, but I immediately needed to vomit again. Suddenly, my throat burned intensely from the stomach acid. Seriously? I now couldn’t swallow and was up the rest of the night dealing with that. Okay….we are where we are.

It isn’t that I don’t appreciate the help. I do. But St. Rita and I can surely find a way to work together that doesn’t involve my getting hurt. In the dark of that night, I decided that I needed to ask my friend (who has some big connections to St. Rita) for a better way to pray to her.

The next day, before I could contact my friend, a package arrived in the mail. From her. Inside, she wrapped a bottle of blessed oil from the Shrine of St. Rita AND a prayer to go along with it.

What are the odds?

Four days later, I am still trying to heal my throat. I can drink only some liquids, and slowly. I can eat very few solid foods. Though it is both painful and inconvenient, it still beats the abdominal pain. I stand in awe of how events are linked and our wishes granted, albeit in unexpected ways.

Thank you for your prayers on my behalf, and know that, if stuff like this is happening in my life, it must surely be happening in yours. Please call for help whenever you need it. I pray that it comes through right away, and without a trade!

Love, Marie

Pain in the neck

I truly appreciate your continued prayers on my behalf, and I wanted to share with you my experience of the power of prayer in case it is helpful for you, too. Know that your prayers are just as if not more impactful!

Last week, I had intense pain in my right shoulder and neck. Last September, I injured that shoulder while carrying a large boat, and the pain periodically returns.

This time, I used all my pain management techniques. I tried to go to sleep at 9:30 p.m. to escape, hoping that the pain would just be gone when I woke, but I couldn’t sleep.

I tried focusing on the space between the bouts of pain, those moments where there was no pain at all. Often this follows the theory of “What you pay attention to will grow” and those spaces between the pain get larger and larger and the pain itself smaller and smaller. Didn’t work this time.

I tried breathing into the painful areas and observing them: What do they look like? What color are they? Spiky? Smooth? I got lots of information. I also continued to get lots of pain.

I tried tong ren (beating on an acupuncture doll with a metal hammer). That brought temporary relief but eventually the pain came roaring back.

I noticed that my shoulder felt better when I was sitting or standing. Bummer, because by now, it was 2:30 a.m. and all I wanted to do was sleep. And I prefer to do that lying down.

With all of my mental activity, my husband couldn’t sleep. He knows my aversion to drugs but suggested that I try an Aleve. I was so desperate that I agreed.

Over an hour later, the pain was even more intense, so I went downstairs to avoid bothering anyone. I sat on the sofa in the dark house and closed my eyes. Without thinking about it, I started to pray. Of course, always my last resort.

“Dear God and all the entities, I would really love to get some sleep right now. Could you just remove this pain? If I am supposed to have it for some reason, I’ll happily take it back in the morning. That would be awesome. Thank you.”

And then I sat. Only a few moments later, with my eyes still closed, I saw a bright light on my right side. And then, twinges in my shoulder and neck. With each twinge, the pain went away. They followed each other in rapid-fire, one after another, until all but one spot of pain was gone.

I added, half-joking, “I hate to be greedy, but can you get this one last spot?”

And the last spot of pain disappeared. I sat for another minute or so, briefly thinking, did that really happen? I need to figure out how to do that for the tumors.

Then I walked to bed, exhausted, and fell right to sleep.

At 8 a.m. I woke up with raging pain in my neck and shoulder and had to laugh with gratitude.