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

Spring will come again!

Over the past three weeks, I have been in bed more than out. At one point, that would have meant lots of fun. At this point, it meant that I had a horrible cold, then chemo, followed by more of that cold, plus a bowel obstruction. Sometimes, I could get out of bed and do one thing with much effort (like brush my teeth), and then return to bed.

Lying there, I spent most of my time looking out the window at the many shades of pale: the grey skies; the white snow on the roof and trees; the clear, thick icicles hanging from the gutters. We live in Cambridge, MA and have been in the throes of winter for weeks. The snow is deep and the temperatures frigid. We can get outside, but doing anything requires more effort than it does when we have less snow and warmer temps. Though we have storm after storm and it can feel like this winter season will never end, I know there will come a day when I will look at green grass and budding flowers, and I will feel the sun on my skin. The piles of snow and cold temperatures will all be just a memory.

I try to take that vision of spring and apply it to my body. I have been sick for so many days in a row, in so many different ways, that it is hard to imagine ever feeling well. I have an underlying worry that this every-other-week chemo will be my life, and I try not to let that take over my psyche but it has been a constant battle. I envision breathing clearly again and actually speaking a full sentence without coughing. I dream of a full week without vomiting. I consider that I won’t need to brace for pain at every turn. I will be able to shower and dress without a second thought to the amount of energy it takes. I imagine feeling light and energetic, able to do whatever activities I want, all day long.

While I am waiting for all this to unfold, I need to find a footing, some stable place to stand that feels even a little like wellness. Without that, these thoughts feel a bit like make-believe, untethered and existing only in the ether.

I know from experience that if I ask for help and wait, guidance will come, but I still get impatient. What if it doesn’t come this time? Like this winter, it felt like my well-being would never shift for the better.

Footing did, however, eventually present itself in a few forms: A friend sent me an email about a promising clinical trial for a cure; I received a really nice card from a friend; I was eventually able to get out of bed and pick up my child from school; my husband and I attended a dinner party where I ate solid food and laughed for the first time in two weeks.

One step at a time, my prayers were answered. I’m starting to feel better. I can breathe clearly for longer stretches. I have been out of bed all day today.

Being ill can make life feel long and dark, like winter. And even though another snowstorm is predicted for tonight, I know that it is only for now and spring is slowly making its way. Even if I can’t see the signs, I know they are there. I just need to hang in there and be patient and watch for the small signs of change.

(Man) sees the morning as the beginning of a new day; he takes germination as the start in the life of a plant, and withering as its end. But this is nothing more than biased judgment on his part. Nature is one. There is no starting point or destination, only an unending flux, a continuous metamorphosis of all things”

~ Masanobu Fukuoka

May you feel your metamorphosis into better and better being. The small changes that make you more of yourself, give you a fuller life, take you to places higher than your dreams. Today is just today, this moment, and there is the potential for better, in the next moment and always, no matter how slow it feels.

Thanks for hanging in there with me, and for believing. Your faith in the future helps me to believe that, underneath events that can be difficult to deal with, there are beautiful, unseen things waiting for the right time to bloom.

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