Marie’s Funeral (Part 2)

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by Anna Huckabee Tull

Each month, for the first twelve months after Marie Pechet’s passing, I will carry her Blog forward, sharing about Marie in ways that I hope you will find meaningful, connective, and honoring of our shared friend.

Here we are, two months after Marie’s passing, and I find myself looking out at the snow outside my window this evening and remembering what turned out to be my favorite part of her memorial service this past December: the way it ended. So I want to tell you about that.

I shared last month that eight years ago, when she first got her diagnosis, Marie had worked with me to write two songs. The first was From the Inside. It came out as a deep and soulful journey of a song, tracking Marie’s shift from feeling “all alone” to feeling “all one” as she grappled with her diagnosis and, on an even deeper level, her fundamental wellness.

But there was also a second song. It didn’t “show up from out of nowhere” like From the Inside did. It was rather specifically conjured and requested by Marie. “I want something that sounds like me, feels like me, but helps me feel more alive right now,” she had said.

The song The Days of Your Opening practically wrote itself. I came flying over to Marie’s house when it was “hot off the press” to play it for her on my guitar. Her face lit up. She didn’t want to change a word of it. Neither did I.

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Marie’s Funeral

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by Anna Huckabee Tull

Each month, for the first twelve months after Marie Pechet’s passing, I will carry her Blog forward, sharing about Marie in ways that I hope you will find meaningful, connective, and honoring of our shared friend.

On the morning of Marie’s funeral, snow fell and fell. The world was covered with a reverent, white sheen. It seemed fitting, somehow. Marie was constantly reminding all of us that it is possible to see more beauty on the branches and footpaths—both literal and metaphorical, on the trail-ways of our lives—whenever we remember to look.

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Final post

For any who have not yet heard, I am saddened to share the news that Marie Colantoni Pechet passed away on December 7. She died at home, with her family, after breaking all kinds of standards by living not just eighteen months, as her doctors predicted, but nine years after her diagnosis of cancer.

My name is Anna Huckabee Tull. Several years ago, Marie brought up this incredible question: Would I be willing to write her Final Blog Post? I had never heard of such an idea, but I knew in the moment she said it that this is exactly what I would do.

On Thanksgiving–that holiday where we pause to consider all the good that surrounds us and all that we are thankful for–I received the following note from Marie. I was hustling through the London airport, but the whole world seemed to come to a halt when I got it. Something in me ripped and then rippled. I could feel, just as Marie could, that the time for some kind of transformation was drawing near.

Hi Anna,

I hope you are having a wonderful Thanksgiving holiday. This message is to read AFTER the holiday! I’m just writing it today because I have a chance to.

These past couple months and in particular the past week has been really difficult. It’s prompted good conversation between Tiron and me and forced me to think through a lot of things in more detail than I could before.

So, I wanted to circle back to you about an offer you made long ago, and see if it still holds and if you are up for this.

Should something happen to me, I would love for you to write out a final blog post. It can be ANYTHING YOU WANT TO WRITE. I know that I won’t write a final post but I do feel that things should come to close in some way.

It can be short, long, about me, about you, a poem, an announcement….really, anything is fine by me. It can even be more than one. I trust you with this if you are up for it.

I sat down with tears brimming–with my whole being brimming. I wrote her to tell her how incredible it felt to be able to do this for her, for myself, and for all of you, the community that has carried and been carried by her through these challenging and also uniquely beautiful years of her life.

Back in the states, I went to see Marie at her house. She was very thin. She was struggling with the side effects of some of the pain medications, and struggling too with the news that her body was considered too weak at the moment for chemo. But all that aside, there she was! Up and about, looking right into my eyes, coordinating dinner plans with her visiting parents, inviting her son Aiden (13) to show me a gift he had given her a few years ago that had absolutely blown her away. “I really nailed it with this gift,” he said, triumphantly. “He really did,” she said.

It reminded me of my previous visit, a few months earlier. I had showed up, guitar in hand, and played a few songs for Marie, her visiting parents and her other son Julian (10). He had listened so attentively while I strummed and sang, wrapped in his mother’s arms. And then he couldn’t resist showing me his shiny new electric guitar. I watched him beaming away, strumming these fabulous power chords: ryawwww! ryawww! ryawww! He was standing right in the exact same space that a year before had held an absolutely GIGANTIC set of gymnastics bars–taking over just about the whole entire family room, because that was his passion at the time. That was Marie–ever oriented toward the light in her boys’ eyes. What makes them feel alive and free? Whatever it is let’s follow it, and see where it leads us!

Now she is gone. How can this be? I want to hear the next thing she has to say. I want to read her next blog post. I want to shoot off an email and marvel at the way she answers back, so quickly, in a manner that leaves me feeling connected.

Now I have to dig deeper within myself to find and feel that connection. But every time I close my eyes, there it is. Just right there, in the exact same spot my love for her resides, taking over just about my whole entire heart!

Marie said that things should “come to close in some way.” Which, I think, was very “Marie” of her. She was all about options, avenues, and possibilities. “Thanks for the offer,” she had said to me, in closing her Thanksgiving note. “And if it no longer feels right in your gut, know that I appreciate it all the same.”

I will most certainly do this for her, and for all of us. But Marie was not about closing. Marie was about opening.

Marie was about opening so much that one of the songs she asked me to play at her memorial service this past weekend was one she and I had composed together specifically for that occasion–her message to herself and everyone else going forth. Its name? “The Days of Your Opening.”

So, in one of our final get-togethers, I told Marie my idea. “What if I didn’t write just one blog post?” I asked her. “What if I wrote one each month, in that first year we are all moving forward without you? What if each month I chose a different topic–something about you that I think is precious, or sacred, or hilarious, or poignant–and shared it with everyone who wants to come along for the ride?”

Marie liked the idea. She gave me her blessing to do exactly that. It was not until today, as I was piecing together this blog post–not a FINAL blog post after all, but a Phoenix of a One-Year Blog Series–that I realized this great idea I had was possibly not entirely my own idea after all. I looked closer at that Thanksgiving email an there it was. About the Final Blog Post she had said: “It can even be more than one. I trust you with this.”

So today I invite you on a journey with me–a monthly post, for one year, to honor a woman, mother, sister, daughter, wife, spiritualist, norm-exceeder, memorial-service-church-packer, a bright light, and an amazing, unique friend who touched so many of us so deeply, in so many ways.

I have so much more I want to tell you. I want to show you and explain about the final Facebook post I did for her last week, that went viral and got re-posted by our local NPR station, along with a retrospective of all her writings for the Common Health Blog. I want to share her eulogy and the highlights of her incredibly moving funeral mass. I want to send you the two songs–and the story of the two songs–that she and I created together specifically for her journey and her funeral. I want to tell you what I know in my heart, and remember from my eight years of loving and being loved by Marie. I want to recognize that “Adventures in Spiritual Living” is an idea that doesn’t have to die. As Marie would say, “Whatever it is, let’s follow it and see where it leads us!”

So: will you meet me here, next month? I want to spend a year honoring our shared friend. Marie was teaching us to keep looking for the quirky little signs, everywhere: that life is calling to us, that goodness is right here, and that the adventure is within and around us all.

I can’t believe she is gone. I want to wrap my arms around her and tell her everything is going to be okay, keep following your heart, keep speaking your truth. But it seems that now she is the one who is saying this to me.

Perhaps I can’t believe she is gone because, in a way, she isn’t. She is alive in each one of us. She’s right here, offering a trail for us to follow. And I, for one, am hungry to see where it leads us. Perhaps you would like to come along. I think Marie and I both would love it if you did.

Anna Huckabee Tull
December, 2016

PS:  To receive notifications of future Adventures in Spiritual Living Blogs posted in honor of Marie from Anna, please be sure to add AnnaHuckabeeTull@comcast.net to your “accepted email senders” list or mark it as “not junk.”

Starting new chemo on Tuesday

Well, last week was a little draining. A trip to the ER on Sunday, a day surgery on Thursday, and in between, the election.

But wait, there’s more! I start a new chemo on Tuesday (FOLFOX, for those familiar). Not my favorite chemo cocktail but here’s hoping that it works. I’ve had four weeks off chemo, which usually would be refreshing but this time was filled with hospital visits, so didn’t feel so much like a holiday. We begin again!

Thank you so much for your prayers and positive thoughts last week. I know it pulled me through. And thank you for your continued support.

Love and blessings,
Marie

This week’s adventure

Today, the day after the presidential election, the mood here in Boston and Cambridge feels a bit somber and quiet. The nice thing is that we are all shoring each other up. That feels good.

In the meantime…

I was hoping that this week, I wouldn’t need to be at Dana Farber or the Brigham, but that was not to be.

On Sunday, I landed in the Emergency Department. When I realized that something in my body was awry, I called my husband, who was in the middle of a Cub Scout adventure. He figured that something must be horribly wrong, as I never ask to go to the ED. Our son wasn’t thrilled to leave Scouts, or to be in the ED with me. Watching the nurses work on me was pretty scary. After a few minutes, he yelled out that he had a tick (he did not) so that someone would take him out of there. Thankfully, they fixed my problem and I headed home the same night.

As a follow-up to that visit, I need to have one of the stents replaced ASAP. Thursday (tomorrow) is the soonest they can do it, and it is with a doctor I haven’t yet met, though he comes recommended by the urologist I trust (who is too booked to do it himself).

Until that procedure, I am supposed to take antibiotics to ward off infection. They prescribed the gentlest one that they felt would work, but my nausea was out of control. After not eating for a few days, I had to stop them and rely on hope that there is no infection.

So I would deeply appreciate prayers and positive vibes for no infection and a smooth procedure. Thank you so very much!

I hope you are doing well today.

Love,
Marie

 

Onto the next big thing…

Consider it pure joy, my brothers, whenever you face trials of many kinds.
James 1:2

This timely sentence popped up on my Facebook feed this morning. I so appreciate your support, especially through this most recent stretch of medical appointments, so wanted to share the news from last week.

On Tuesday, we saw my oncologist to get the results of my CT scan. Basically, all of the tumors have grown, so this chemo apparently isn’t working. Bummer for that, and also because my quality of life was so much better on this chemo than on anything else I’ve done!

I need to add that, before this most recent chemo (Erbitux), I was doing FOLFIRI and I recognize that I was super lucky with that. For most people, FOLFIRI tends to work for months, but I, somehow, got SEVEN YEARS out of it. I remain grateful for that. I guess I expected the same for this new one.

Thankfully, I have a few other chemo options, and we are looking into immunotherapy options as well.

So no chemo this week. The anxiety is enough – ha ha. We will use the time to make a decision and then move forward with the chosen chemo after that.

The other good news is that I was able to attend our son’s fourth grade school play. Before the play started, I talked with a mom who was sitting nearby. Making conversation, I asked if she worked in the city. AND, not only does she work in the city, but she heads a research lab for immunotherapy drug development and trials, at the hospital affiliated with Dana Farber! Wow. On top of all that, the play itself was actually enjoyable and fun, and he did a great job.

(Next part is a little explicit – skip the rest if you are easily queasy.)

This weekend is a little challenging so far, as I am having trouble, again, urinating. I thought that the stents would fix this, but there is a tumor in my bladder which can throw off blood clots, and that can…block the path out. I’m drinking water to try and increase the pressure and push that blockage out of the way – I want to avoid another visit to the ER. Again, it is the simple things! Next time you run to the bathroom and feel like it is a bother, recognize that it is a good thing!

Not sure that I would say that my current trials are pure joy, but I will try to see them that way. Thanks again for all your prayers and support. I’m tired, so will wrap up here.

Love and blessings,
Marie

 

 

 

 

Tube is removed!

My Tuesday CT scan went smoothly (I get the results this coming Tuesday) and my Wednesday visit with the Wound and Ostomy Nurse gave me lots of new information to process. All good!

On Friday morning, I was scheduled to get my nephrostomy tube removed. Woo hoo! In the pre-appointment phone call, they told me this: The doctor will inject dye into the tube and make sure that everything is flowing smoothly. If it is, they will remove the tube, and no sedation needed. If not, they will make a decision of what to do, and it may involve sedation.

The uncertainty on the medical front can be a little crazy-making. The logistical side also weighs on me, as I don’t like to inconvenience people, but I cannot drive myself home from these appointments. This requires me to ask a friend to keep the whole day free to pick me up at “whatever” time and in whatever drugged shape I am in, and to find folks to manage childcare, school pick-ups, etc. To top it off, my husband was out of town.

But friends were flexible and generous, we solved the logistics, and I was eager to finish up the week of appointments. On Friday morning, the Uber arrived promptly and I got into the car, looking forward to some quiet time to settle in before my procedure.

“Hi, are you Marie?” the driver asked in his unmistakable Minnesota accent. Knowing that the typical Midwesterner is chatty, I settled in for a conversational drive. My quiet time would have to wait.

We arrived at the hospital on time (despite traffic, construction zones and rain – very impressive) and I checked in. They asked me to have a seat until they called me, so I did.

Next, two women walked in together. One was dressed like any customer you might see at Starbucks. The other was dressed in what I think of as hospital clothes: Ugly clothes that you can easily wash in scalding water or might even choose to burn. She was quite thin (like me!) and her clothes hung on her like a hanger. I’m guessing that she was the patient.

“Hi,” she cheerfully greeted the person at the check-in desk. “I’m Deborah. D-E-B-O-R-A-H.”

She chatted like I do when I am nervous, about the pencils and her students. Once she was checked in, they called for me and someone led the three of us (Deborah, her friend, and me) downstairs to the room where they prep us patients. I still wanted to have some quiet time, so I walked behind the others. We checked into pre-op, then sat together.

I noticed that Deborah was wearing a nephrostomy bag. As much as I thought I needed quiet, I was compelled to ask her about it. She lamented that no one could tell her how to live with this, and I could relate. (They only told each of us, “You’ll figure it out.”) We shared our few personal tips and tricks for wearing the bags and handling the tubes, how to sleep (which is, not), etc. She told me that, at one point, she had two of them, and she hated them. I could relate to that too. I didn’t tell her that I hoped to get my tube removed that day. We joked about having so few body parts left inside our abdomens.

Soon they brought us each to our own little curtained area so we could be prepped for our procedures, and I wished we could chat a bit longer.

The nurse anesthetist walked into my curtained area, and we immediately recognized each other from my prior procedures. She was also chatty. Clearly, I was not going to get my quiet time yet, so I put my own agenda aside and conversed.

She described what would happen in the procedure room and – I love this part – NO ONE PUT AN IV IN ME. No one. I was prepared for them to say, “Just in case we need this” but no one did. I was thrilled.

Soon they wheeled me out of my area, past all the other patients. Everyone looks so sick in this context so I try not to look at them, but I suddenly saw Deborah, and we gleefully yelled out “Hi!”

The nurse wheeled me to the procedure room, where I transferred my body face-down to another table that had an x-ray machine hovering over it. The nurse kept talking and talking, now about another patient who loved to do food-related travel and was soon going to Greece with a famous local chef. She also talked about his love of wine and how he promised her a bottle of something really special. It occurred to me that while she may not be administering anesthesia for this procedure, she was effectively distracting me. She does her job well.

She transitioned to telling me that my doctor does a wine-tasting fundraiser every September to benefit the Boy Scouts. I was intrigued. His son was in Scouts, she explained, and he fully supports his son in everything he does. Then she mentioned that he also sells handmade lanyards to raise money for autism, and I was again intrigued. I briefly shared our family story with her and the doctor appeared.

He introduced himself, then immediately turned his focus to directing the Fellow, who was doing the hands-on work. The procedure moved quickly. I loved that the doctor said all good things during the procedure, like “this looks good” and “it’s a smooth flow.” I don’t think he said them for my psychological benefit, but I was still grateful.

The Fellow injected dye, watched it on the x-ray machine, removed the stitches and the tube, and bandaged me up as the Attending Doctor guided him through it.

As they wrapped up their work, the doctor said to me, “All done. Now you never have to see me again.”

The first time I saw you, you made me cry. Gulping, devastated sobs.”

“You were furious with me.”

I laughed. “I was. I hated you.”

The nurse interrupted us. She shared that she told me about his fundraisers, and I shared that we had a few things in common. He started to tell me all kinds of stories about his son and daughter. He was obviously proud of them both and had a good sense of humor about their personalities. I loved listening to him animatedly share the details.

When he left the room, the nurse said, “I have NEVER seen him talk so long, much less to a patient. That was something.”

During college, I had a job as a bank teller. One of my favorite moments of the day was taking a super grumpy customer and shifting their mood before they walked away from my counter and into the rest of their day.

In that moment, I had that same feeling. Though I suspect that this time, I was both the teller and the customer.

As they wheeled me back to the pre- and post-op room, we passed Deborah, getting wheeled to her procedure. The nurses stopped so that we could connect one more time.

Maybe I wasn’t supposed to have a quiet morning. Apparently, it wasn’t what I needed.

You can’t always get what you want
But if you try sometimes well you just might find
You get what you need

Rolling Stones

I hope you find that you get what you need, as well as what you want!

Blessings and love,
Marie