Birthday milestones

The boys had their birthdays this weekend, turning 13 and 10. One is becoming a teenager, and the other is entering double digits. A significant birthday for each of them.

It is significant for me too. I am keenly aware that I was diagnosed shortly after they turned 4 and 1 years old. I am in grateful awe that I am here to witness their growth and to share in these milestones. I honestly didn’t believe that I would make it this far, and that in itself is a miracle.

I am also grateful that this birthday for them is BEFORE I get the results of my CT scan on Tuesday. I can (try to) fully enjoy the day before dealing with whatever the CT scan may force me to deal with.

The doctors, I believe, anticipate growth. I wouldn’t be surprised at that news, based on some recent changes in my body. I can physically feel the growth of one of the tumors, I have pain more frequently and in new spots, and some lymph nodes are newly enlarged. None of those are good signs, though there is always a chance that things are “basically stable.”

Nevertheless, at my last appointment, for the first time, the doctors presented new chemo options for me to consider during these two weeks. This is so that, should the CT scan show growth, I will have had some time to mull the options and can make an on-the-spot decision about where to go next.

My two choices are FOLFOX (which includes a drug that gives neuropathy – I’ve had that before and it is not easy to live with) and Erbitux (which results in a “disfiguring” facial rash – also lovely). While I am grateful to have options, you have to admit that this is a difficult choice.

So I am hoping for stability and the ability to stick with the “devil I know.” In the meantime, I will celebrate the boys’ birthdays with a gratitude that I can!

Please send good vibes, as I send them straight back to you!

Love,
Marie

The Power of Presence

When I first started this chemo gig, my infusion space at the hospital looked like party central. I invited friends and we gathered into the cramped space. We sometimes had food, we always had laughter, and I eventually ended up looking drugged because one of the anti-nausea meds made my facial muscles droopy and me unable to speak clearly.

Over time, the scene changed. We finally figured out that we could lower the dose of that face-altering drug. I stopped taking the steroids (which made me a crazy screaming person who couldn’t sleep) and replaced them with IV Ativan, which alleviated my tendency to vomit but put me to sleep.

Though we cut back on the party vibe, I was lucky enough to still have a friend to join me each time. They would support me through the port access and blood draw, and sit through the meeting with my doctor. After that, my nurse would administer the Ativan, which would shortly knock me out.

I always suggested that my friend leave right at that point. Why bother to stay only to watch me sleep? And what if I drooled or did other embarrassing or gross things – I wanted to keep my friends and some shred of dignity.

Recently though, an old, dear friend joined me for chemo for the first time. In her bag, she brought a shawl in case I got chilled, and a few other things. I can’t remember exactly what they were, only that every time I needed something, she had it in that bag. I was really touched.

We reached the point in the process where the nurse gave me Ativan, so I thanked my friend and told her that she could feel free to leave.

“I’m staying,” she said simply.

“Did you bring a book?” Her bag was shapeless and didn’t seem to hold one.

“No,” she replied. “I am going to sit with you.”

“I’ll be asleep,” was my weak but best response.

I didn’t have kind of time or energy to dissuade her, so that was that. I thought her idea was a little crazy but I was drugged and in no position to win with logic. And I love her whether or not she has a crazy idea.

So we moved to a room with a bed (for me) and a chair (for her), and I was out.

Some time later, the Ativan wore off and I opened my eyes. The first thing I saw was my friend.

At that moment, I was feeling nauseous and in pain, but my overwhelming feeling was the relief of, “I am not alone.”

I suddenly remembered: I do typically wake during chemo. And when I do, I grope around for the nurse call button. Eventually a nurse arrives who looks me over and asks what I want. I stammer that I need my nurse, she says that she will get her, and leaves.

Everyone is very kind. But they are strangers, and it takes effort to interact with them. After each chemo session, I block it from my mind as part of the whole event.

But today, I remembered, possibly because this experience was such a contrast. And not only did I feel so supported, but my friend looked at me and knew what I needed.

Firmly, she said, “I will get your nurse.”

No call button. No unfamiliar intermediate nurse. My friend left and I knew she would return with my nurse AND the medicine I needed. And she did.

She stayed with me until my chemo session was complete. Each time, when I finish, my husband arrives, and he and the nurse help me to put on my shoes and get me into a wheelchair. I never remember anything from there. But this time, I remembered that my friend was still with me. And that made all the difference in the world.

 

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

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.

Creating happiness in your life

The other week, my husband and I attended a talk by Dr. Sanjiv Chopra on what makes a person happy. Dr. Chopra’s points resonated with me, especially because one or more of these elements often lifts me from blah into a happier place, so I thought I would share my interpretation of his talk.

He summarized four aspects of life that can increase your happiness:

  1. Family and friends (your chosen family)
  2. For others
  3. Forgiveness
  4. Gratitude

Family and friends

Surround yourself with people who lift you, who love you, who you love back. People you want to have in your life. Spend time with them. Enjoy those connections.

Forgiveness

Don’t carry the energy of anger, hatred, resentment, etc. Forgive others. Forgive ourselves.

For others

Doing things for others. My husband and I debated the meaning of this one. If you are a nurse and help people all day long, does that count? I don’t believe it does. I think you have to help others with them in mind, thinking about what they like. I can take care of my family by making meals, creating a space that feels good to live in, planning fun outings, etc. If I do it as an obligation or routine, that doesn’t make me feel better. It makes it feel like drudgery. But if I do it with them in mind, considering what they would like, the same action is more fulfilling for me and usually for all involved. For example, being home for my child after school is different than thinking, “He might like to play this game – let me set it up so it is ready to go when he gets home from school.” or even “They would really enjoy this for dinner – let me put that together for them.” (I know – I sound so house-wifey.)

Gratitude

Take the time to truly appreciate the gifts you have in your life. Think about this: What if you woke up tomorrow and found that you only had the things you explicitly were grateful for today? What would those things be?

For me, gratitude also helps me to notice special happenings in my life that otherwise would go unnoticed, kind of like finding little surprise treats in my day.

I wish happiness for you – today and always. When you are happy, you feel like you can do anything. May you have that fabulous energy that enables your dreams to become reality. And your happiness will be contagious!

Love,
Marie

 

 

 

All the world’s a stage

On Sunday, we attended Cirque du Soleil’s show, Amaluna. I loved the fabulous performance, and now that I am more aware of gymnastics, I noticed how they incorporated countless extreme gymnastics moves that take much skill and practice.

For example, in one part of the show, a performer (a man) stood on his hands. Okay, while I can’t do that myself, my seven-year-old can, so I wasn’t wowed. But THEN another performer (a woman) STOOD ON THE BOTTOMS OF HIS FEET. Can you picture that? His arms were holding up and balancing not just his body but also hers.

As if that weren’t enough, they then separated their legs to make an opening through which another cast member could and did flip. The whole crew made it look easy.

Later in the show, a group of men performed on a teeterboard. Picture something like a seesaw, with Grown Man 1 standing on one side. Grown Man 2 jumps onto the other side, sending Grown Man 1 flying and flipping into the air. Grown Man 1 lands back on the teeterboard, sending Grown Man 2 airborn to do the same thing. Soon, Grown Man 3 joins in the fun and their alternately flying bodies resemble a human juggling act.

Cirque du Soleil

photo from the program

Eventually, eight (or so) men were jumping on the teeterboard or into the air. I noticed that when they weren’t flying through the air, they were subtly spotting their fellow cast members who were. One time, one man landed with one foot on the teeterboard and one off, and the man near him put his hands on the first man’s hips as if part of the act, but this action steadied him enough to move his other foot onto the teeterboard without wobbling.

When the men finished their act, they bounded to the edge of the rounded stage to take a bow and take in all the applause. While they stood there beaming, I looked at the performer on the stage in front of us, who happened to be the spotter who helped out. While we applauded, he quickly made the sign of the cross, kissed his fingertips, then raised his fingers and his gaze up to God in a motion of gratitude.

That stuck with me. He was doing what he clearly loved, recognized the risk, and showed his gratitude for a beautiful outcome.

Life can feel a bit like Cirque du Soleil – beautiful, sometimes crazy, sometimes risky. We move individually and together, with so much going on all around.

Maybe we don’t have acrobats flying through our legs, but we certainly hold our own weight and carry others when we can. We spot and support each other to keep our balance and get back on our mark, and together we create an amazing, breathtaking performance. I am grateful to be part of it all, and I give thanks to God for that.

I give thanks also to you for spotting me, supporting me, helping to keep me balanced and get back on my mark, and helping us all to look so good together.

Enjoy your performance today, and that of those around you!

Love,
Marie

Scan results come next Tuesday

Thank you for your prayers, positive thoughts, comments and emails. Everything really lifted me up at a time when I needed it!

The logistics of the scan went well today, and I get the results on Tuesday.

Thank you again for all your support. The CT waiting room can be a hotbed of anxiety and you really helped to keep it at bay. Thank you for making a difference.

Have a beautiful week.

Blessings and love,
Marie

Attitude of gratitude?

I remain incredibly grateful for all your good feelings and prayers on my behalf, for the meals you cook, the driving you do, the fun emails and FB posts. All of it is uplifting and I know that I am incredibly lucky to be feeling so great.

When I am completely down and out, I am automatically grateful for every little thing: the feel of sunshine on my skin, a kind word, a drink of water. There is a piece of me that feels so open to grace that I want to keep that feeling without also experiencing some catastrophic event.

When I feel good, though, I become more critical of myself and others and have to consciously generate gratitude. For example, I took an extra week off chemo and on Saturday, I felt really good. We even had friends coming for dinner – something we used to love doing but a rare event in the past many years. I don’t have the energy to throw a dinner party, so we offered to take them to a restaurant.

On Saturday morning, my husband told me, “They said they would go anywhere we wanted. Where can we go where you can eat something too?”

I became really excited. I am not just vegan, but I also avoid sugars of all types (including fruits), vinegars, fried foods, processed foods, carbohydrates….basically, I eat vegetables and beans.

That said, many restaurants in our area fit the bill. Plus, I know that these friends are game to try anything and have even been juicing vegetarians in the past, so I took them at their word and rattled off three vegetarian restaurants.

My husband paused for a moment before asking, “What will the rest of us eat?”

Now, I know he has good intentions. He wants to be a considerate host and make sure that there is plenty of food that everyone will enjoy. But did my grateful heart focus on that? No. My critical, ungrateful side focused on counting the times I have gone to fancy restaurants and ordered a lettuce salad with olive oil and lemon. I don’t mind, honestly. I primarily go to dinner to enjoy the company of friends. But in this moment, I focused on a very selfish and manipulative angle, and it wasn’t pretty.

I snapped, “What do you mean? Everyone can eat vegetables. Why do I have to always be the one to make do?”

As soon as I said it, it didn’t feel good, but I’m not good at turning on a dime. So I walked away.

What was it exactly that was bothering me? My husband was only trying to consider everyone involved, including me. And once I turned it around and saw it that way, and was simply grateful that he was taking everyone’s preferences into account, I felt better.

I know from experience that being bitter, sad or selfish increases the pain in my body. I feel physically better when I focus on the good and keep my sense of humor and perspective. It took a tumor to teach that to me, and apparently, I am still learning.

Thank you for being in my life, and for giving me so many opportunities to practice gratitude.

Love,
Marie

There is fun, and then there is fun

Thank you for all the energy you send my way. It enabled me to travel to Pittsburgh with my family, to celebrate Easter with my parents and siblings and partners and cousins and friends. A two-day trip would normally be crazy and unthinkable, with everything that gets packed into that, but your support enabled me to do that.

On Easter Sunday night, at bedtime, I laid in bed with my younger son. As part of their bedtime routine, I like each boy to reflect on his day and think about what he is grateful for. I also like them to give thanks to God for those same things, though sometimes that part pushes my luck with their patience.

Neither boy is the reflective sort and they find this exercise tedious. Still, I persist, posing the question in various ways.

Tonight’s version was, “What was your favorite part of today?”

As I waited for his answer, I mentally ran through his day. We all slept at my parents’ home, so the kids woke in the same house as their cousin. They had a special breakfast made specifically with them in mind and received Easter baskets of goodies and gifts from my parents and their aunt and uncles. We went to church (granted, not a potential highlight when you are seven years old) and they ate cookies and cake and special treats throughout the day. He put on a gymnastics and dance show with his cousin.

Midday, a friend of mine arrived in a convertible BMW and took our son for a fabulous fast ride in her car. His grin was non-strop and I don’t think it was the power of the wind against his face.

He didn’t reply so I asked him again, “What was your favorite part of today?”

“Tonio.”

Late in the afternoon, my cousins arrived, bringing their two boys. Their older son is a teenager and did a fabulous job of playing with his younger brother (Antonio) and my younger son, who are close in age. My cousin and sister and I sat on chairs in the backyard and watched while they played football and freeze tag and lots of other games where you run around a lot. The balls would go over the hill, and the boys would race each other down the hill over the brambles to get the ball, then race back up again. Their clothing gathered grass stains, and the feet of my barefoot son were so dirty that we couldn’t scrub them clean in the bath that night. Both of my cousin’s boys are amazingly easy-going and fun, and they laugh easily. It felt idyllic.

Because it was the last big event of the day and everyone left barely an hour before this, I attributed his answer to the recency effect. So I pushed. “Easter candy?”

“Tonio,” he said again, definitively.

“Gymnastics?”

“Tonio.”

Riding in the convertible?

“Tonio.”

Though it had been a great day overall, clearly the best was the connection he made and the physical fun he had playing outside with someone he adores. Okay. Tonio.

I know that I get so caught up in what I am trying to get done that I often put off that physical connection and that fun. This was a good reminder for me to refocus.

Thank you for connecting with me, for being open to my connecting with you, and for enriching my life.

I send you wishes for a beautiful week, filed with the absolute joy and love of connecting with someone amazing.

Love,
Marie

What is reality?

Thank you for your prayers and good wishes. I had chemo last week, Tuesday through Thursday, with no vomiting during my at-home time. Woo hoo. To top it off, usually Friday is a recovery day, but this time around, I was able to walk and pick up my son from school. I attribute that to your prayers and positive energy around no side effects.

Last week also carried a Joni Mitchell theme, specifically her song Both Sides Now. Friends on Facebook would post pictures of clouds – storm clouds overhead, clouds during a sunset, clouds below their airplane. Each time, the lyrics, “I’ve looked at clouds from both sides now….”  popped into my head. Then a friend posted those specific lyrics. Another posted a picture of himself with Joni Mitchell.

In the meantime, chemo was done and I was feeling better. I reflected upon some point years ago, right after my diagnosis, when I was struggling to process all that was happening. At that time I thought, “What is the difference between the day before I got my diagnosis and the day I got it?” My body felt the same. The primary change was that someone else told me something they thought about my body.

Their words influenced my reality. They shifted how I thought and felt about myself and my life. So, I worked to form my own version of reality, and when I am feeling good, I like to think and act as though I don’t have cancer, and that makes me happy.

But then, sometimes, a different side comes roaring in: A friend sharing her experience on hospice, another experiencing a scary phase, a third who passed away. I felt deeply honored that they let me into their very personal experiences, yet my heart broke each time. I didn’t know how to handle all this, how to be a friend without layering my own concerns for them on top of it all.

You do that all time for me, and my gratitude expanded.

It is winter here, grey and cold. Driving to church on Sunday, the boys started to talk with each other about death and heaven. They discussed whether there is a point before you are really dead where you get to decide whether or not to die, who you might see there, what it would feel like. They seemed to have a pretty comfortable handle on the afterlife, and I was glad they were having this discussion. But it also reminded me that our family needs to have discussions like that, and I felt more and more of the darkness.

Once in church, the topic was about Jesus being a light in the darkness. When in the dark, look for the light. If opening my heart to my friends can have me feel heartbreak, it can also let in the light.

The day felt better now. Looking at it from a different side helped. Which is reality? I don’t know, but I like to think that it all is, regardless of the side we see.

Both Sides Now
Joni Mitchell

Bows and flows of angel hair
And ice cream castles in the air
And feather canyons everywhere
I’ve looked at clouds that way

But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way 

I’ve looked at clouds from both sides now
From up and down, and still somehow
It’s cloud illusions I recall
I really don’t know clouds at all 

Moons and Junes and Ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I’ve looked at love that way 

But now it’s just another show
You leave ’em laughing when you go
And if you care, don’t let them know
Don’t give yourself away

I’ve looked at love from both sides now
From give and take, and still somehow
It’s love’s illusions I recall
I really don’t know love at all 

Tears and fears and feeling proud
To say “I love you” right out loud
Dreams and schemes and circus crowds
I’ve looked at life that way 

Oh but now old friends are acting strange
They shake their heads, they say I’ve changed
Well something’s lost but something’s gained
In living every day

I’ve looked at life from both sides now
From win and lose and still somehow
It’s life’s illusions I recall
I really don’t know life at all 

I’ve looked at life from both sides now
From up and down and still somehow
It’s life’s illusions I recall
I really don’t know life at all