Lourdes: Meeting our Guide

Meeting our Guide

Thursday, September 23, 2010

The religious area was one block from our hotel. I planned to do the religious parts of the trip on my own, but Tiron came with me to make sure I was settled.

We walked past all the trinket stores, crossed a street, then through the large gates and down a wide hill.

At the bottom of the hill, we easily found the statue of Our Lady of Lourdes and starting looking for the green sign that said Day Pilgrim in English. We noticed Day Pilgrim signs in other languages, as well as people putting flowers in the fence surrounding the statue.

This place was MUCH larger than I expected, in every way. Across from the statue of Our Lady of Lourdes, there is a cathedral with beautiful mosaics. There were also two large, temporary white signs in front of the cathedral saying Lourdes Cancer Esperade. (Lourdes Cancer Hope) in large green letters. The cathedral had a paved area in front of it, I suspect for gathering.

The information building was nearby with a sign pointing to the bookstore around the back. There were a few other relatively non-descript buildings. One had a large sign in English: CONFESSIONS.

Looking back toward the entrance, there was a steady stream of pilgrims filing in.

Among them walked a woman carrying the green Day Pilgrim sign in English. She was thin, with grey-blonde hair, maybe in her late 60’s. She had pale skin and a calm voice.

“Hi, I’m Rose. I’m from the United States, and I have the honor of being your guide.”

Rose described the schedule for the day. I could do any of it that worked for me.

9:00 Mass in English with Fr. Brian (pronounced Bree-un)

10:30 Way of the Cross with Fr. Patrick

2:30 Tour of St. Bernadette’s life in Lourdes

5:00 Eucharistic procession

9:00 Candlelight procession

Tiron returned to the hotel, and my day began.

Lourdes: Arriving by train

Arriving at Lourdes

Wednesday, September 22, 2010

8 p.m.

Tiron and I took the train from Paris to Lourdes and arrived around 8 pm. It was dark, but neon signs identified bars and brasseries. In a weird way, it reminded me of New Orleans, though I doubted we’d see strip bars and drunken frat boys.

Earlier that day, we visited Notre Dame in Paris, and the place felt more like a museum than a church. Tourists ignored the signs marking prayer areas and requesting silence as they laughed, talked, and took photos. I wondered if Lourdes would feel touristy and commercial as well.

We grabbed a taxi to our hotel. The streets around our hotel were filled with more neon signs identifying restaurants and countless shops selling the statues, medals, and trinkets that we Catholics seem to collect. 

Our hotel was bright and modern. We checked in, then wandered off to find the recommended restaurant for dinner.

As we walked, I kept an eye out for shops that might sell fresh vegetables, but saw none. As we passed a café, we overheard two women, dressed in white nurses uniforms, speaking in English, so I stopped to ask them about the things we should do in Lourdes.

“Well, if you have only one day,” they told us in their beautiful Irish accents, “we recommend the Day Pilgrimage. At 8:30 a.m., find the green sign at the statue of the Blessed Virgin” (as if I knew where that was) “and your guide will take you from there.”

By now, it was 9 p.m. and people carrying candles were walking from everywhere, all in the same direction. I recognize the makings of a candlelight procession when I see one, but I decided that we should get food and start fresh tomorrow. 

Love is in the air!

I wrote this note before I got this week's chemo but am just sending it out now....

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Thank you so much for your emails, phone calls, and cards, as well as your comments when I see you. I realize that I don't always respond or call. I generally intend to reach out to you in return, but I sometimes can't at that moment, and then, later, life starts whizzing by and I don't return to it all. Please know that I remember your words and your sentiments as I go through my days. I truly carry them with me, and they carry me, too. Thank you. It's hard to explain the expansive feeling this all gives me.

This round of chemo impacted me for more days than usual. Typically, I feel better by Saturday morning, but this time, I was still wiped out on Saturday night. On top of that, the awful stomach cramps returned the following Wednesday. I was happy that they passed by the next morning.

Thankfully, all of that is history and I feel great again. And when I am feeling good, it is hard to remember how bad it all felt. Then everything seems to be okay, and life is sunny again.

The big news here surrounds the start of school. Like many families, we loved our summer together and hated to see it end, while we were all ready and eager for school to start.

Aidan returned to school on the day after Labor Day, and he is in a "loop" year, where he has the same classmates, teachers and classroom as last year. It had been explained that, because this is all very familiar, it is like an extension of last year and the kids can jump right into learning. I was a bit skeptical, mostly because I still carry a bit of attitude that says, "my son doesn't necessarily conform to the norm." Still, I kept a hopeful eye out for signs a smooth re-entry to school.

On the first day, I was surprised by how familiar it all was to ME. I loved seeing the familiar, friendly faces of parents who have become our friends enter the classroom with their children, everyone full of summer sun and energy. The animated conversations made the air sing, as the kids were saying hello to each other and the parents were saying good-bye to the kids.

I took a moment to watch the dynamics of the children in the classroom. I am not a naturally child-centered person. I often have mine tag along with me rather than structure my day around them. I don't understand what goes on in their brains, and I'm not the most patient person on earth. In fact, there was a time in my life where I viewed parent-child affection as something akin to the feelings that can arise between kidnapper and captive. I'll admit, I have come to adore my own two little kidnappers!

And, sure, I liked Aidan's classmates. But I was blown away to find that I was suddenly in love with each and every one of these kids. I love how one of the boys starts his day by reading a book, how a little girl likes to draw by herself as she slowly joins her friends in conversation, and was surprised to realize that I even know these little details about them, that I noticed that without really knowing that I did. I love the way they interact together, how they invite others into their circle, how they push and shove to make space for themselves and for their friends.

As I watched Aidan happily playing with a friend he missed over the summer, I realized that I love these kids individually and as a group and am so thankful that he has friends who know him so well, too. And I get to be part of it all.

I hope that you are happily surprised by the love you feel for those in your life, and get to take a moment to feel the love and happiness they share with you.

Love and blessings to you,
Marie

Good News: CEA is 2.1

I got the wonderful news that my most recent CEA is 2.1. Below 2.5 is considered normal, so big sigh of relief here.

In the past, my CEA has been a reliable indicator of tumor growth. Each time it went up, there was a tumor growing in my body. Thankfully, the number has been getting smaller each time we test. And while this is a relief, I alternately hold tightly to this good news, even though it is like holding onto sand, or I project myself into the future and worry about whether it will stay low. When I feel like my best self, I do try my best to stay in this moment and enjoy it for what it is.

The past couple of weeks have been fantastic. We enjoyed fabulous weather (even the three days of torrential downpour), a boatload of interesting activities (kids went flying, swimming, sailing and fishing, and I even made JAM for the first time ever), and warm, fun visits with friends both at home and away.

After a wonderful two weeks, it felt strange to walk into the infusion room. No matter how normal I feel, this place makes me revert to being a patient. It helps that I have a tendency to get to know the staff, but, despite the friendly conversation, there are constant reminders that I'm the patient and they are treating me. They are the ones who take my blood pressure and oxygen levels. They have the liberty of commenting on my weight. They lead me to the chair where I will sit for a few hours (sometimes in a private room, sometimes not) and hand a blanket to me. The nurse sticks a needle into the port my chest to draw blood, making sure that my white count, red count, platelets, etc are strong enough for me to have chemo this week. The doctor talks with me to find out about the things going into my body (eating okay?) and coming out (vomiting, constipation or diarrhea this week?).

Even after the nurse leaves my little infusion area, I inadvertently listen to the conversations from the other rooms: How much nausea are you having? Are you taking Emend? Decadron? What are you eating?

When I am outside of Mass General, I feel great. Inside here, I am reminded that not everyone expects me to have good blood pressure and oxygen levels, a healthy and stable weight, and good blood counts. The fact that I haven't thrown up or had digestive problems is considered to be good news. But, it is also a reminder that these things are expected. I tend to try and live up to expectations, so I need to fight that tendency here.

Though I sound like all this is happening "to" me, I admit that I participate in it. For example, I subscribe to a number of health newsletters and news updates specifically related to cancer and colorectal cancer. The emails provide random reminders that I am in that world, too.

The articles in the emails are informative and sometimes relevant. A recent update referred to a study revealing that, in people under 40 years old, rectal cancer has been on the rise since 1985.

I don't fit the description of the typical colorectal cancer patient: older male who eats red meat. As I meet more people who don't fit the mold, I keep developing theories of other risk factors. The scientific side of my brain knows that we ignore data that lies outside our theories, or we treat that data as an exception. I want to scream, "Update your list of risk factors to include these outliers!" But it takes alot of exceptions to get our attention, so few studies are done on those outliers, like me. Or maybe I am simply just looking for an affinity group.

Regardless, I read this report with fascination. I talked with my husband and my doctor about the study, excited that someone noticed a pattern outside the standard assumptions. I felt a certain connection with this group and was happy to feel noticed in this way. Then I realized, I'm not actually under 40!

So here I sit, in my over-40 body that feels great when I keep my mental gymnastics out of the mix, waiting for my chemo cocktail. Thank you for all your prayers and good wishes. I know that each of you has your own particular challenges, either personally or with someone you love, and I really appreciate that you share your positive focus on my treatments as well. It makes more of a difference than I can describe. If you think of it (or even, right now!) send some quick good wishes for a good chemo session and chemo week. And I'm sending those right back at you!

Love,
Marie

Good news from MRI: New spot in liver is not cancerous

More good news....I had an MRI the other week to check out the new spot on my liver, and everything is fine.

So, we went on vacation. It was awesome. This was a secret to me: Provincetown is incredibly kid- and dog-friendly! So the kids had fun, the dog is finally relaxing a bit (Kenobi is very connected to me and to the kids, but typically shies away from anyone else), and we got to see friends in Ptown, in Truro and on Nantucket. A fantastic break from the norm, and my last chemo session feels like ages ago. I love that!

I remain so grateful for your support, as well as for the stories you share about others who have walked this road in various ways and healed.

A few weeks ago, Julian (newly 4) and I joined some friends at a swimming pool. Julian swam in the shallower end, Young Mr. R (our friends' son, who is 8) swam in the deep end, and I got to visit with my friends. After a bit, Julian got out of the pool, wrapped himself in a towel, and rested on a chair.

Soon, Young Mr. R called from the diving board, so we could see his dive. And a fine dive it was!

Julian is a good swimmer. He has been swimming since he was quite small, and is used to people making a fuss over what a good swimmer he is. So, he generally feels like a big fish and that there isn't alot of swimming left to learn.

But the diving board! It was the first time he's seen a diving board, as well as someone dive off it. A whole new world of swimming opened up to him, and he ran with excitement toward the board to try the same thing.

That is how I feel. I think that I am doing well, but then, I see or learn about someone else doing better, or someone who once was doing chemo and now lives a normal life, or someone who had a medical condition that invaded their lives and now doesn't need the hospital staff....that opens my eyes to new possibilities, higher paths, and the fact that these are even possible.

I am grateful for your stories, not just about health, but in every realm, because they help me (and I'm sure others) learn and grow and expand my world.

And again, thank you for your good wishes for chemo this week!

Love,
Marie

CEA results are in, and the news is good!

I am writing this from the infusion room, hooked to chemo, so pardon any fuzziness....

I got some great news -- My CEA level is 3.2! Or, maybe it is 3.1. I don't remember exactly, but I do remember that it is below 3.5, which was my previous low number. I saw that about two years ago, and haven't seen it since. So, this is truly cause for joy!

Of course, I can't just revel in the good news; I have to find the angst somewhere. And right now, it lies in two places:

First of all, 2.5 and below are considered to be normal. While the rest of my bloods are great compared to the average person walking down the street, I know that I need to get this tumor marker as low as possible.

Second, and even bigger: As I begin to enter any scary phase of my life, I am more reliant on my faith and acknowledge my dependence on God and elements greater than myself In fact, I usually just hand the whole thing over, saying, "I know I've made a total mess of this. Can you fix it? I promise I'll do ANYTHING!"

When my life starts to feel more "under control," I tend to think it is under MY control, and then become more lax in my faith and practices. That shift bothers me. This falls into the same bucket as, when something heartbreaking happens to me, I have huge compassion for everyone, but when things are going well for me, I am a bit more judgmental of others.

Lately, I work to stay aware of this, and try various approaches to live more consistently with faith and compassion. Given that I know how hard it is to maintain these, I am especially thankful for yours on my behalf, and very impressed that you keep it going. I know that my quality of life and relatively good health stems from that.

Also, so many of you, of us, of those we love, have been through and are going through all kinds of heartbreak, pain, diagnoses, treatments. Please know that I pray for you, and if there is something specific I should focus on, let me know. Truly.

Last week, the homily at church really touched me, and I'll share one aspect with you. "Jesus came to form a community of faith, not individuals of faith."

Regardless of your religious beliefs, I sincerely appreciate your being part of my community. It is powerful. Thank you.

Love, Marie

Even in Routines, Changes Abound

Thank you for hanging in there with me. This road is starting to feel long, though I'm not complaining about that! Just realizing that, if it feels long to me, I suspect that it may feel long to you as well. Please know that I deeply appreciate your being along for the ride, keeping me and my family in your prayers, and doing so much for us.

Friends have asked about the status of the HIPAC (hot chemo) surgery that I was considering. This is a huge surgery, and since things are going relatively well, it is hard for me to jump into it. But, it is still on the table. I need to get a liver MRI first (to check out the spot on my liver, though the PET CT seems to show it is okay). So the HIPAC is on hold for now, and I don't need to make an immediate decision about it.

My two-week cycles are starting to feel routine, but there are definitely changes. One big change (on the chemo front) is that my usual nurse had a baby, so I got a new nurse. Though I knew that this was coming, I still burst into tears...then moved ahead.

The big, positive change is that I had absolutely no stomach pain this past cycle. Yay! I know that more than a few of you were helping to pray for that. THANK YOU! It was like I got an extra day of life.

We had alot of changes in our household, too. Aidan turned seven, and Julian turned four (on the same day -- I like to say "Thank Heaven for 7-11"). I was initially diagnosed with this when Aidan just turned four and Julian one, and I sometimes wondered if I would see Julian turn four. That alone was worth celebrating.

The day before the boys' birthday, we made a trek to Cambridge, VT to pick up our dog! I'm not a dog person or even an animal person. And I like things to be clean. No one could be more surprised than I was about my sudden deep desire for a dog.

After my diagnosis in February, I felt the boys should have a pet. A cat was out of the question (due to allergies) and I immediately ruled out a dog because it would have to live inside. We considered rabbits, since they could live on the screened porch and outside, then decided it wasn't a good fit. We tried to get chickens, but the coyotes got to them before they reached our house. Then I met a friend's dog, and suddenly my view and emotions changed, and I got a laser focus on that.

Kenobi (named after Obi Wan from Star Wars) is a 7-month-old cockapoo. He arrived housetrained, relatively calm (though scared out of his wits), and willing to do what I ask him to do. That alone is a refreshing change for me. Plus, he seems to be smart, which I appreciate, and adores me, so who can resist that? The boys are thrilled with him. Tiron is graciously adapting.

Another big change is my mother's cooking. My parents have been generously traveling from Pittsburgh, PA to Cambridge, MA for one week every month, which basically amounts to every other chemo session. They are gifted at keeping the house running, and my very Italian mother is a fantastic Italian cook. Growing up, we always ate all Italian. I didn't see a bagel or Chinese food until college.

But she jumped into preparing raw foods, and now routinely spouts beans, makes raw hummus, and uses the dehydrator to craft incredible crackers. She starts with my recipes, then enhances them to make these amazing creations that I can't replicate. She even juices wheatgrass and greens. I admit that I am impressed. She still makes meatballs, sausage and ribs for everyone else. The meat dishes aren't tempting to me, the spaghetti is, and I like that the combination makes our house smell like my memories of growing up.

I hope that your summer is going well, with lots of beautiful moments, big and small, and that you are riding the waves of change as they happen. I also hope that you can feel the adoration that surrounds you, starting with adoration from me.

I have chemo again this Tuesday (July 20), and really do appreciate any prayers, positive actions, even smiles on our behalf.

Love,
Marie