Decisions, decisions

The snow in Boston is crazy high, the temperatures bitterly cold, and the kids don’t have school.

Trudging through the backyard

Though it can feel like we are trudging through, it is all actually fine. I love hunkering down with my family, the snow is beautiful, and I bought a super-warm blanket. The only glitch is that, in the past few days, I caught a cold that includes a dry cough with a really sore throat and fatigue.

No big deal, for sure. But here is the scoop: I am scheduled for chemo tomorrow. I need to decide whether to go ahead with it.

Last time I went in with a cold (about two years ago), here is how it went down:

I signed into Dana Farber, where they always ask if I have a cold or flu. When I said yes, they gave me a mask and sent me to my first appointment, which is where the nurse accesses my port and draws bloods to get data.

I told the nurse that I was not feeling well. He or she was sympathetic but not the decision maker. They accessed my port, drew my blood, and sent me (needle in my chest, tube dangling) to my next appointment, to see my oncologist.

My blood numbers were good, so my oncologist told me that he sincerely believed that I should do chemo. Besides, he reasoned, I was already accessed (meaning, I had the needle in my chest, ready for chemo….).

By then, I had spent two hours at Dana Farber. I was tired and in no shape to disagree with anyone who remotely felt like they had authority. I moved forward with chemo.

This happened every two weeks for quite awhile.

As a result, I had no voice (not even a whisper) for over a month and really couldn’t shake that cold for much longer.

But I understand their point of view: Of the two illnesses, the cold is simply uncomfortable and will eventually move on. Cancer, who knows.

From my point of view, having my body deal with chemo on top of this cold is a lot. I also know that, before I have the conversation with my doctor, I need to start out with my own point of view.

Here’s what I know:

  • My oncologist is doing his very best.
  • His medical knowledge far exceeds mine.
  • My throat is so raw that inhaling through my mouth causes pain, as does swallowing.
  • I cannot imagine vomiting.
  • I will have a CT scan in March and want to do as much as possible to keep things stable / improving so I can take a break.

So, I have to develop a going-in position. Then I try to have this conversation over the phone, rather than go in and have my body ushered through the process while my will weakens. But first things first.

Here are some options I see:

  • Postpone chemo until Friday, if they can take me then. (That is another day when my doctor sees patients.)
  • Postpone chemo until next Tuesday. This creates a complicating factor impact on the rest of my life, as it changes my chemo weeks and off-weeks, and I plan important things for those off-weeks.
  • Postpone chemo for two weeks. This doesn’t seem like a big deal, but after that chemo session, I’m taking a three-week break, so that isn’t an ideal solution.

My oncologist may have other suggestions.

I feel a bit like I am playing roulette, which is scary. But I also know that I have to take responsibility for my decisions and that ultimately, I know that my doctor will do what I want. I just have to be clear about what I want, and listen to his point of view as well.

If you can see a good solution, do share!

I would love to, for example, hand this over to someone who both shares my values and knows more than I do. But this is my circus for sure. Advocating for myself does not come naturally, though definitely a good thing for me to learn.

I hope you have easier decisions to make today, and if you have difficult ones, I’m hoping you can find the answer that works for you.

Much love,
Marie

One point on the journey

I can take any moment, magnify it, and project it into the future, even if my life is a testament to unpredictability. I’m constantly reminded that it is hard to imagine the end of a journey based on any one point along the way.

About two weeks ago, I brought my car into the dealership for service. Getting into the loaner car, I immediately noticed a chewed up pen in the console and a few little candy wrappers on the passenger seat. Yuck. But it was only a loaner and I was in a rush so I drove away without complaint.

Awhile later, when I got out of the car, I glanced into the back seat and saw something sticking out from under the driver’s seat. It was a $20 bill. When I pulled it out, a $5 bill came along with it!

Judging by the cleanliness of the car, it probably belonged to whoever used the car before me, or maybe even before them.

I considered keeping it. I thought about handing the money back to the dealership and asking them to find the previous driver. Maybe I should just give it as a tip to the guy at the dealership.

What I knew was this: It was fun to find, and it wasn’t mine. I decided to give it back to the dealer. Then it is their responsibility and decision to find the owner or keep the money. And if the guy at the dealership kept the money, well, maybe he needed it more than I did. Who am I to judge?

When I returned the car to the dealership, I was greeted by the same very nice man who gave the car to me. I told him that I found $25 under the seat and joked that, if someone had cleaned it, they would have gotten a nice tip. He laughed and said that he would look up the previous driver. I handed the money to him, and I went on my way.

Later, I told the story to my sons. The younger one said, “Why did you give him the money?”

“It wasn’t mine,” I replied.

He looked at me quizzically. “It was once you found it.”

Hmmm. That is another way of looking at it. We let it rest there, though of course I wondered about the rest of his morals, how they were developing and what kind of man he would become.

About a week later, our family plus a friend drove through a giant snowstorm and wandered into an empty Bertucci’s restaurant. As the host led us to our table, I noticed a dime on the floor. (Does NO ONE clean anymore?)

I tapped my son and pointed down to the dime. He looked at me, then picked it up.

We returned to our place behind our group, marching to our table, but he veered off. I figured that he had gone to the bathroom and would be back.

When he returned, I asked, “What was up?”

“I went to give them the dime,” he said. After a pause, he added, “It wasn’t mine.”

Again, no one step can predict the end of the journey, but that one sure felt fine.

Wherever you are in your journey, I hope you are feeling fine, or are on your way there.

Love and blessings,
Marie

Outside the restaurant:

Lexington Center in the snowstorm - recycling

Our heart connections

Not surprisingly, I think a lot about death. I think about the experiences of my friends who have passed. I think about my own eventual death. I think about death as a concept and as a reality. I think about it from a physical perspective and from a spiritual perspective. I think about it from a distance and up close.

I am curious about what might exist after death. I’ve read the books written by Anita Moorjani and Eben Alexander. I’ve read the book Heaven is for Real and saw the movie. Like many people, I’ve had funky experiences where I can feel someone around me, then later learn that they died during that timeframe. I’m convinced they came to let me know of their passing. I’ve had random, unpredictable events occur, related to someone who has died.

Given this train of thought and my experiences, you would not be surprised to know that I believe in mediumship. Mediums vary, both in how they connect with those who have passed as well as in their ability to work with you, but I’ve found a few who I adore.

My favorites combine warmth and humor to convey their messages. I have a blast working one-on-one with Monica the Medium (based in Pennsylvania and Northern Virginia), where she delivers personal and spot-on messages from those I love.

Two New England mediums I’ve seen, not one-on-one but in large auditorium settings, include John Holland and Maureen Hancock.

Working with a crowd of hundreds, John Holland was entertaining and captivating. So when I saw him scheduled for a smaller venue of about 60 people, I scooped up two tickets.

Then something came up (a memorial service – more death, ironically. It happens.) and I couldn’t make the event. Though I know many people who could use the tickets, I kept having this feeling that I should give them to my friend Marinda.

Marinda is a graduate student in therapeutic dance and in her early thirties. When she was two years old, her father died after his car was hit by a drunk driver. She and her mother became a tight team and best of friends.

Then almost two years ago, Marinda’s mother, Cheryl, died suddenly, thrusting Marinda into complicated emotions as well as an opportunity to help a woman by approving a face transplant from her mother. Cheryl’s story and Marinda’s unselfish, loving actions were the topic of many news shows and newspaper articles (including this NYTimes article). Marinda built these tributes to her mother for more than a year while she was also grieving and going to graduate school.

As I kept hearing that I should give these tickets to Marinda, I tried to convince myself it wouldn’t make sense. She could finally focus on her schoolwork and would be busy with finals and end-of-term projects. She wouldn’t want to drive an hour to attend a funky event where she may not even get called on. She might not find a friend to go along and she might not want to go alone.

But the voice was persistent, so I tentatively contacted her. She immediately said yes AND that she had a friend who could join her! I was thrilled that the tickets would be used and hoped that she would have fun. Maybe her mother would even come through for her. The voice gave approving silence and I went on my way.

Marinda and her friend checked into the event as me (meaning, no one there knew her name or could do prior research on her), and later that night, Marinda called me: Out of the approximately sixty people in the room, only about eight were called on. John called on Marinda right away and her father came through. Here are some excerpts, in Marinda’s words (and shared with Marinda’s permission and blessing):

He asked if I had a brother. I do, but not many people know this. My dad got a girl pregnant when he was 16 and then was forced to go to a boarding school. I have yet to seek him out and not many friends know this about me. “He wants to acknowledge his son.”

Then, he says “John and Mary”. Who are they? They are my mother’s parents who passed on when I was 10 and 16. I was extremely close to them. He didn’t fish for those names, he just said it.

Marinda – you are an artist. You are on stage and you are a good dancer. “New York, California”. I spent a very short time with my father on earth and taking me to NYC for my first birthday was his idea. When I was 6 months old we road tripped across the country to California. There are many beautiful pictures of this trip.

“Mom passed, and you weren’t expecting it. There are questions about her passing. Feels like she took the wrong medicine and it affected her body. Your mom didn’t act like a mom but more so a big sister/friend.”

He went on to describe how my father has been with me and has watched me graduate from college. “You did well in school.” “Take your parents love,” he said. I took it and feel lighter and loved like I’ve never felt before.

And right when I thought he was done, he said “Tommy, Tommy, who is Tommy?” That is my father’s name. With a smile he said, “Dad sees it all.”

Those tickets were never meant for me. I felt honored to be a pawn who was moved to enable all this to unfold, and I thanked God that I actually listened! I marveled at the workings in our life beyond my intellectual understanding.

About one week later, I read a Facebook post from Debbie Whitmore’s sister. Debbie was a fellow cancer patient and friend who passed away in November. Debbie’s sister had gone to see Maureen Hancock and the first spirit to come through was Debbie! She, too, shared messages that were clearly personal and gave her family peace. (This is also shared with her sister’s permission.)

I love that Marinda now has a relationship with her father and that Debbie’s sister got a few more minutes with Debbie. I miss Debbie as well, so it made me feel better too.

I love how we can all stay connected. Maybe our heart ties remain strong enough to keep us linked to those we love. Maybe our souls stay around and heaven really is here on earth. Though it doesn’t replace the physical presence of those I love, I have experienced some powerful and fun connections. It gives me hope that my family and friends are okay.

I am reminded to listen to the voices that guide me, and to trust that our heart connections live on. I continue to marvel at the workings of our hearts and in our lives, at the things that we cannot see but can strongly feel.

Love,
Marie

Preparing for the storm

I love snowstorms…as long as I get to stay in a warm house with fresh food and maybe even a fire in the fireplace. I especially love the change in routine and the change in the air.

The changes begin a few days before and include stockpiling food. I needed to as well: Not only did we need snowstorm supplies like milk for hot chocolate and snacks for cozy movie times, I had just finished a chemo week so our supply of fresh food was low to non-existent. There was no way to avoid the packed parking lot and crowded shopping conditions.

I mentally prepared to circle the parking lot but, on my first pass, I was thrilled to score rock star parking close to the door.

Entering the store, I found – no carts. Hmmm. Well, this time I actually remembered to bring my reusable bags, so I decided that, given my close parking space, I could shop by filling my bags with what I could carry, paying for those items, dropping those bags off in my nearby car, and then returning to the store to repeat the process until I got everything I needed.

I had one bag filled and was working on bag #2 when I came across an empty cart with no apparent owner! I happily snagged that and slowly navigated the crowded aisles to finish the rest of my shopping.

My last stop was the deli counter. They didn’t have an number system, so I made a mental note of everyone who arrived ahead of me so that I didn’t miss my turn. Then, while I waited, I eyed the prepared foods. A nearby man was placing his order for slices of cooked beef.

“Not too rare,” he cheerily told the person behind the counter.

Normally, the conversation would end there, but he continued.

“My grandmother cooked it well-done, so I like it that way.” Clearly, he was not from around here. People generally aren’t chatty and even less likely to share personal information with strangers. It reminded me of Pittsburgh.

“It’s my midwestern roots,” he added.

He’s got to be from Pittsburgh, I thought. It is the only place I know where people talk with everyone about anything. But then, there could be other places…

The Pittsburgher in me couldn’t resist, so in my most friendly Pittsburgh-tone-of-voice I asked, “Where in the Midwest are you from?”

Smiling and slightly apologetic, he responded, “Well, not really the Midwest.”

I got excited – I knew it was coming.

“I’m from Pittsburgh.”

I almost jumped on him. “Nuh uh! I’m from Pittsburgh too!”

So as I waited for my turn and then placed my order, we shared stories of growing up in Pittsburgh and laughed about adjusting to New England culture. We remembered knowing and talking with everyone in our neighborhood. We thought nothing of dropping unannounced into friends’ homes and them into ours. Eventually, we hugged and went our separate ways.

Later, as I stood in the slow, long line to check out, I heard a voice behind me say, “I’m going to get in line behind my new friend!”

Happy to see him, I noticed that his cart held far fewer items than mine. So I pointed that out and said, “Do you want to go ahead of me?”

He brightened even more. “Really? That is such a Pittsburgh thing to do! If you are serious, I would love it, because I have a concert to go to and I don’t want to be late.”

“I’m singing in it,” he added.

Again I noticed the “more information than usual” but it was cool to have context. I realized that I wanted to ask a million questions, like “Really?” and “What kind of music do you sing?” and “Where is the concert?” I’m sure he would have been unfazed but my social radar causes me to automatically censor myself so as not to annoy everyone around me.

He moved ahead of me in line and we finished our chat as he finished paying. I was thrilled to meet someone from Pittsburgh and get to connect to my own culture for a bit. Totally made my day. I love snowstorms.

I hope that, if you are facing a storm, you are able to see the resources around you. Even if they aren’t ideal, I hope that they can work for you in a way that enables you to get what you need. I hope that you can find a friendly face along the way and feel amazingly uplifted. And when the storm does arrive, I hope that you are able to settle in a warm and cozy place filled with good food and love.

Blessings always,
Marie

Anything is possible!

It’s been a week when I didn’t have to do chemo, and, physically, I felt relatively good. Emotionally, I felt slightly off-center, almost like I am a beat behind on everything. Things feel confusing much of the time. I become hesitant to speak and, when I do, I say the wrong thing.

In this space, I wonder why I am doing all this to keep going, and going where? Will things get better or is this what my life will forever be like in the best case? And if it will forever be like this, would I prefer that it is longer or shorter?

To consider that shorter is acceptable becomes a step down a slippery slope. Then, instead of looking at all the things I CAN do, I look at the things I can’t: I tire more easily; my brain doesn’t work so well; I can be more scattered than focused. Those thoughts impact how I feel, and the downward spiral continues.

Then, one day this week, I received messages from two friends. One shared that there were clearly spots on her mammogram, but when she went for her biopsy, no one could find the spots. The spots were there, on the study, and then they were gone. Wow.

Another friend was just “fired” by his oncologist, meaning that the cancer (stage 4 colorectal, which many would say is incurable) has been gone for so long that he doesn’t have to go back for checkups.

These stories remind me that anything is possible. These people aren’t distant strangers; they are friends. I am grateful to my friends for sharing their stories, and grateful to God and the universe that they were shared at the perfect time to get through to me. Thank you.

Please know in your core that, whatever you are aiming for, anything is possible!

Love,
Marie

The things we need

In the Italian tradition, I was named after my grandmother, Maria. Our bonds are too numerous to mention, but they include these: She was there when I was born on her half-birthday, and, on my birthday 37 years later, I was honored to be present with her as she passed away.

After that, my grandfather wore her wedding band on a chain around his neck. About ten years ago, I was scheduled to have a mastectomy. The week before my surgery, we were celebrating his birthday at his home in Pittsburgh. He was in his 90’s so none of us told him about my upcoming surgery. I lived 600 miles away and could easily go through it without him knowing and worrying.

But as we sat around the table, he looked at me, took the chain from around his neck, slid my grandmother’s ring off the end and handed it to me.

“You need this,” he said simply. Stunned, I accepted it.

A few years later, when my own wedding band became too tight on my finger, I started wearing hers. I liked knowing that she wore this ring as she kneaded dough, gardened, and washed the dishes – all things I remember. I like that it makes me feel that she is near.

I am not someone who wears big, flashy jewelry. I never wanted and I don’t have a big diamond engagement ring, or any engagement ring at all. The rocks I prefer look more like stones than gems and they decorate my tabletops and windowsills rather than my body.

But one day, routinely deleting the countless emails from vendors, a message from Tiffany’s caught my eye. It showed three rings. One had a huge, rectangular, orange-ish gem in a gold setting, and I couldn’t get it out of my mind. I tried to talk myself out of it: The band was gold and (other than my grandmother’s wedding band) I wear silver or platinum. I don’t like showy jewelry. I use my hands too much to take care of a fancy ring.

Weeks passed and my obsession continued. I wasn’t comfortable with being so strongly drawn to an object like this. I decided to find out the price of the ring. Surely it would be overpriced, I thought, so I could then decide it was too expensive or unreasonable, and the desire would leave me alone.

I couldn’t find the ring on the website, and I suddenly felt panicky that they may no longer carry it. I called the store. The woman gave me the price – it was surprisingly within the range of what I would consider. She gave me the sku number – I was sure that I wouldn’t buy the ring but I wrote it down anyway so that I could find it more easily on the website and look at it when I wanted to.

My obsession did not abate, so I decided to see if the local store had it. Maybe if I looked at it, it wouldn’t live up to the hype in my mind and I would no longer want it. Calling one of the two Boston locations, I learned that Tiffany had only one of these rings left, and it was in the Boston Copley Place store. But I was busy and there was no way to see it soon.

The day before Thanksgiving brought crappy weather and we were doing nothing in particular. Again, the ring occupied my thoughts. I finally decided that I would see if it was still in the store. I drove with one of my sons into Boston to find that one ring and look at it.

The ring wasn’t in the case and it took awhile for the salesperson to find it. In the meantime, she kept showing me other rings. Pretty, sure, but nothing that I would want.

When she finally found the ring, it was like angels were singing. I tried it on my right hand – it fit perfectly. I tried it on my left hand – it went well with my grandmother’s wedding band.

I texted my husband. “Get it,” he said. “Now.” (It’s possible that he, too, was just tired of my obsessing.)

We decided that he should give it to me for Christmas, and I was as excited as a little kid waiting for Santa. I couldn’t wait to wear it.

On Christmas morning at my parents’ house, I quietly opened the tiny blue Tiffany box and was wearing it as we worked in the kitchen later that day.

“Is that a citrine stone?” my sister asked.

“How did you know that?” I was surprised.

“It’s Nonna’s birthstone,” she said. “Is that why you got it?”

No, I thought. But now I know why I needed it.

Baby steps

Luckily, my chemo regime is typically relatively routine – infusion from Tuesday through Thursday, followed by a relatively predictable recovery through Sunday. Within that, each day contains its own familiar cycles, including the depression that starts around Wednesday afternoon. It’s dark and it’s irrational. I understand that this depression is part of the whole cycle, but that doesn’t make it easier.

Even though I historically emerged from each depressive event so far, that logic doesn’t help me to see the light at the end of the tunnel. In the midst of each chemo cycle, every single time, I feel like I won’t make it through to a better place. Each time, I think that maybe there is no light or even an end to this tunnel. Maybe this time, I entered a cave that only gets deeper and darker.

When I feel like I can’t do it anymore, usually Wednesday night, I text one of my cousins in some socially acceptable way of saying, “this sucks and I just want to die.” She, thankfully, responds in a variety of ways that says “hang in there.”

“This is the part where I just want to go to sleep and have someone wake me when chemo is over.”

“Ah I’m sure. Hang in there. You are the strongest person I know. It’s helping you…Luv u”

 

“Not horrible but could be better.”

“At least not horrible. That’s good…Think good thoughts.”

 

“Less than 24 hours. Counting down.”

“Been thinking about you all day. Hang in there.”

I cling desperately to my connection with her, as if it were a strong rope that links me to the real world and prevents me from spiraling further and further into deeper darkness.

I simultaneously want to close my eyes and not open them again AND jump right back to the place where where joy feels effortless. I can see others being happy. But during that time, a happy place feels far away and unreachable for me.

I’m starting to realize that I can’t just jump from here to there, and I can never predict what will pull me out. This time, it was a series of baby steps that combined serendipity with a bit of grace that allowed me to step into a slightly different emotional space.

First, I prayed for help, not sure that it would come but promising to watch for it. Shortly afterward, I received a text from a friend who is going through her own horrible time. She was scheduled to fly to Florida with her children but felt that she couldn’t do it.

Then I got this message:

“Florida warm sunny and lovely…xo”

She did it! Her strength gave me a little strength, showed me a little bit of light.

Next, I received a blog post from someone who had a hard year but decidedly focused on the good parts, and I felt a little more positive.

Experiencing each of these moments was like Jesus holding my hand and helping me to take a small step forward, showing me: “See, here is a little bit of good that can enter your heart.” Though I was not yet out of the darkness, I could believe that, if I held on and paid attention, I would be led somewhere that was safe.

We traveled to Pittsburgh for Christmas to see the rest of my family. I was still sick and in pain, but slowly feeling better. On Christmas Eve, during the day, I went to see a friend. Even though she was tired, I was thrilled to get to see her and I took on lots of good energy from her. Baby steps.

That night, feeling like I was slowly making my way out of this dark place but annoyed that it was taking so long, I got an abdominal obstruction that caused waves of pain on its own, plus pulled on the tumors to make them hurt too. I lay in our dark bedroom as my husband put the Santa gifts under the tree. I couldn’t participate in anything and I hated that my illness was ruining Christmas for everyone around me and myself. Plus, we planned to travel to the Bahamas the day after Christmas, and I knew we wouldn’t make the trip unless I felt better. I used the mind-body techniques I knew, and they helped, but progress was slow.

I needed to know that I wasn’t alone, that someone was with me. I prayed, “I need some light, something.”

Just then, the bedroom door, which had been closed but not clicked all the way, opened just a crack and a thin stream of light poured into the room and onto me. Even though I was still in pain, I started to feel a little more optimistic.

I laid awake until about 3:00 in the morning, working through the obstruction. I started to feel better and drifted to sleep when, at 3:30 Christmas morning, the light on the bedside table next to my side of the bed turned on. I kid you not. It was not a timer. It just turned on. It was a three-way light and thankfully turned to the dimmest setting. I had to laugh inside. I might still be recovering, but so many things are out of my control. I felt like it was a sign. And if a light could turn on by itself, then maybe anything really is possible.

Christmas day was lovely, and as I write this, we are on a flight to the Bahamas….

Landing on Long Island, Bahamas

Thank you for all the tiny things you do (and the bigger ones too). Each one makes a difference that changes a life, including mine.

Love and light,
Marie