It was a good chemo week!

Thank you for all your emails, well wishes and prayers. I completely SAILED through the last chemo, physically. I have to admit that, while I am usually fairly upbeat, the past three weeks had me totally down in the dumps. It felt like there was sad news and endings everywhere I turned, and I kept relating all of it to me. 

Some of the endings are cancer-related: A friend of a friend has been amazing at supporting me by being open about her path of living on chemo. I learned that she is no longer doing chemo, and not because she is miraculously cured. Though I've never met her personally, she really has been a rock for me through all of this. 

Then, of course, there is Elizabeth Edwards. I felt that, if she could live forever, then I could, too. But then, she died. Guess I set myself for disappointment there.

I've been having really disturbing dreams about dying.

Even the songs on the radio seemed to reflect cancer and loss. I swear that every time I turned on the radio, I heard this Christmas song about a little boy trying to buy shoes for his dying mother who might not make it to Christmas Day. Gut wrenching sobs. Ugh.

As if those weren't enough, the yoga studio I attend is closing. On the surface, this doesn't sound like a big deal. I attend a weekly class, and lately, I've only been attending every other week. That computes to twice a month. Not often.

It's a small studio; I never counted the students, but there were maybe 18 max in each class. I first met Joseph, the teacher, during a time in my life when I really needed to laugh. You wouldn't think that one would find laughter in a yoga class, but I laughed through my entire first class with him, and the laughter pulled me back to the class again and again. 

Many of the students were regulars, and despite my nine years there, I knew few of their last names or what they do outside of yoga. But when I got the message about the studio closing, my stomach sank. I realize that we've formed a community. I would miss Joseph and the entire community. I had no idea how important and strong this thread was in my life.

I was so tired of everything feeling like it was going away. And I was tired of feeling sad. Yes, I know, endings can make way for new beginnings. Sometimes it is hard to really believe that.

Still, we all go about each day, doing our thing, and I suddenly noticed that it was more important to me, personally, to support the decision of my instructor than to be sad about it. And, surprise: It felt better, too, like I was lifting my head up again, and able to look outside myself.

I have no clue what the future holds. I hope it holds more surprises like this, elements that light the way of how to feel better.

I suppose that our yoga community will stay in touch, at least for a time. I suspect that it will morph, as we all change and grow, but we are truly part of each other in ways I never knew, and it is nice to actually be aware of that. 

I'm taking small steps forward. I'm setting up a yoga room in my house, or, more accurately, asking my father to do that while he visits this week. I've stopped listening to the radio for awhile. And I'm going to Dana Farber to get a different perspective on my health situation.

The laughter - well, some things are just so life-affirming, and laughter is one of them. That will have to stay. 

I hope you can find real joy today, that makes you smile so big that you have to laugh, that something tickles you in such a way that you see the humor in it, and that you can feel the light shine right through you.

Chemo again today -- I'm writing this from my chair! Your prayers and good wishes are always welcome and help to make this all okay.

Love,
Marie

Managing cancer and going for world peace, one step at a time

Thank you for your thoughts and prayers, your good will and your support, for me and for my family. Besides the huge impact on me and my health, I know that it helps Tiron immensely, and the kids as well. For them, as for all of us, the stress pops up during what often seems like unlikely moments, and we appreciate how you are handling it along with us. Thank you.

It might seem like your efforts are small, they are huge for us. I was reminded of this during a recent talk with my doctor. People comment that I am managing cancer as a "chronic disease" (as opposed to a fatal diagnosis), and I like that mindset. Though I still hope to get rid of this cancer, if I can't, well, I'd like to LIVE with it.

As I thought about this mindset, I started noticing more and more subtleties. For example, my doctor would say, "When this chemo stops working...." when I would prefer to hear, "IF this chemo stops working...." That one word difference can send my emotions diving to the bottom, and after our conversation, I was left alone to stand up, brush myself off, and somehow climb out of the hole I was in.

This kind of knock-down was not exclusive to my doctor. It happens, for example, when someone honks their car horn: I happily drive along, feeling the breeze from the open car window and singing away, then that horn blast goes right through me, shattering the good will into shards flying out the window. 

I do it to others as well, like when I come down too hard on the kids for a relatively minor infraction and watch the change in their eyes. Or when someone is blocking my way and I say "excuse me" with a bit of edge in my voice. Though unintentional, the other person ends up absorbing my ill will, where it either does some damage to them, or it affects their mood and they pass the ill will along to someone else.

If we can pass along negative feelings with small thoughts and actions, we can certainly pass along positive ones, and we feel that impact when you share yours. They may seem to be small, but they are powerful, and hopefully we are passing those good feelings along to others. 

So, thank you, for all you do for our lives, and also for the feelings of peace and good will that you are sending out to the world as a result.

Chemo day for me -- keep those good thoughts and prayers coming! :-)

Love,

Marie

P.S. Some folks wanted to know about prior emails. If you want to check them out (no pressure), look here:

http://adventures-in-colon-cancer.blogspot.com/

Skipped last chemo; next one on WEDNESDAY

Thank you so much for all you have done to show your concern, always and especially during the past four weeks. I apologize for being out of touch, but do appreciate all the check-ins.

I also want you to know how much I appreciate your flexibility with me and my family. I feel like I am always asking for exceptions, making or canceling plans at the last minute, forgetting things that I should be expected to remember. I know you have been cutting me alot of slack for a long time. I hope it hasn't been too hard on you, and I truly believe that helps in reducing the stress in our lives and makes things so much easier to handle. We all really appreciate it, especially me.

Overall, I'm doing just great. I feel really good and my energy level feels normal. In fact, when I went through this a few years ago, I did six months of chemo and I was totally wiped out. So far, it has been nine months of chemo. I don't know if the mix is different, but I am grateful to have the quality of life that I have.

My most recent chemo, however, threw me for a loop. I was sick for eight days following it and couldn't even get on e-mail. Then, once I could get on email, my computer broke. So I am quite behind on that. 

By the time I felt better, my next chemo session was only days away and I didn't think my body was ready for another hit, so I skipped that session. That was a bit scary to me, and I wondered if I was giving any cancer cells time to grow. Plus, I got sick a couple of times during my off-weeks, but I have to say, the good days have all been great!

I would normally go in for chemo tomorrow, Tuesday, but Aidan has his second grade Harvest Feast at school on Tuesday night. It is a big deal for him, and I find it pretty exciting, so, for this week, I'll wait one more day and do chemo on Wednesday.

This decision has ripple effects. Two weeks from now is Thanksgiving. I wanted to have chemo on Monday that week in order to feel better by Thursday. But this week's Wednesday chemo means that Monday will be too soon afterwards (does that make sense?). So I will skip chemo again during Thanksgiving week. 

Alternatively, I could be wearing my infusion pump during Thanksgiving dinner -- I could dress it up for the photos. Maybe have feathers coming out of my chest? But the taste of chemo doesn't seem to complement turkey (or raw foods). Plus, the steroids I take make me short-tempered and crazy! Maybe skipping is a better plan. Everyone has been so great at putting up with me; I don't want to push it.

Skipping ALL of these would be truly lovely, though it doesn't feel like a viable choice right now. Please do think of us this week and send your prayers and positive thoughts, especially Wed - Friday. Thank you for hanging in there with us. We are so blessed that you are in our lives!

Love,
Marie

Good CEA number again -- whew

Thank you for being there -- just wanted to share that I got my CEA number tested last time and it came back at 1.8. Below 2.5 is considered in the normal range, so I am both relieved and a little scared. Scared because I worry that it can only get worse, but I try not to focus on that.

It can be hard to stay positive, because though I feel great, the doctor arrives listing all the ailments that i could possibly have, asking if I felt any of them. I hate that it plants all that in my head.

However, the other big fun news is that Julie, my rock star nurse, is back from maternity leave! So, all is right with the world.

I'm sitting here in the infusion room, with the needle in my chest and the tubes hanging out, and just feeling so lucky that you are out in the world, doing your thing, maybe singing to some great music as you sit in traffic, chatting with folks you are happy to bump into, moving some project forward. I'm psyched to be doing all those things in just a few days, and it is great to know that it is all happening already.

Sending tons of love and gratitude your way, and all the blessings I know how to muster up.
Marie

Back from Paris and Lourdes!

Thank you for hanging in there with me. I get concerned that this road is long and boring for you, and a bit self-conscious about all these e-mails, but really appreciate both your support and your presence in my life. Thank you.

My last chemo session went well, but the new blip on the scene was that something was literally growing out of my stomach. It is where I was opened from the surgery, and it looked like colon and was freaking me out. Some things are just meant to stay inside your body and remain unseen! Plus, we planned to leave for France in a few days (more on that later) and I was worried this could change those plans.

While all this was going on, Tiron got diverticulitus and had already scheduled an appointment to see my colorectal surgeon for that. So I muscled in on his appointment. We both saw her at the same time and got the two for one rate (two charges for one appointment). He got antibiotics, I got that thing burned off (yikes, but glad to have it taken care of), and we were good to go.

For the better part of the past year, I’ve been drawn to go to Lourdes. I’m not a Francophile, I am not a frequent traveler, and frankly, I’ve never felt a need to go to a religious site. So this was a surprising calling.

First the dog, which I never thought I would want but love, and now this.

The question was, how to get there. Between chemo, the kids’ schedules and needs, my funky diet, and the emotional hurdle of leaving the kids for the first time and going that far away, it just didn’t seem to be do-able. Still, I was drawn.

Have you heard the story of the woman in the flood? It goes something like this:

A flood was coming and the police drove by a woman standing on her porch.
“We are evacuating the town. Get in our car and we’ll drive you out,” they said to her.
“I’ll wait here and God will come for me,” she replied.

As the flood waters rose, a rowboat went by. The rowers said to her, “Everyone is evacuating. Get in our rowboat and we’ll keep you safe.”
“I’ll wait here and God will come for me,” she replied.

The flood waters rose higher and she sat on her roof. A helicopter flew over and the pilot said, “The town has evacuated. Get in the helicopter and we’ll get you out of here.”
“I’ll wait here and God will come for me,” she replied.

After she died in the flood, she asked God, “Why didn’t you come for me?”
To which He replied, “I sent a car, a boat and a helicopter. Why didn’t you take them?”

One of my favorite things is when God works through people, and I feel like that is what happened here. Our dear friends invited us to their apartment in Paris. Coincidentally, it was during a week that worked well for us, both kid- and chemo-wise, and we decided to go! There was no way we could have done it without them (and my parents to watch the kids), and I truly feel like God was working through Julie. Thank goodness she let him!

So, after the chemo and surgery appointments, we flew to Paris. It was my first time there. Paris is wonderful, of course. We did all the things I love to do: visit with friends, wander the streets of a beautiful, vibrant city, shop for food and cook. Well, I didn’t cook, since I eat mostly raw, but we ate our meals at the apartment in order to accommodate four different diets. So I was able to mostly stick to my diet. The baguettes and cheese are impossible to resist!

Then Tiron and I headed to Lourdes.

For you non-Catholics, Lourdes is a pilgrimage site. Think, Mecca. I never in my life thought I would be doing a pilgrimage, but then, life is full of surprises, especially these days.

I met some wonderful people. Father Brian (pronounced Bree-un) and Father Patrick, both from Ireland, shared jokes and stories with soul. Anne and Claire from Scotland were like two angels who appeared out of nowhere and guided me on my journey. Plus, they told me they thought I was in my 30’s – loved that! Or maybe I just didn’t understand their Scottish accent…Little Monica (age 5 ½ -- she insists on the “1/2”) from Rochester was so joyful and fun, skipping as we retraced the difficult steps of life of St. Bernadette.

The place itself is incredibly large. There were over 25,000 people there and it didn’t feel crowded. In two days, I only saw a portion of it. There were two cathedrals and numerous chapels, the Grotto area, the baths, a bookstore, museum, information booth, and much more. Except for the bookstore items and candles, everything was free.

I have no idea how this place operates and pays to keep the lights on. It was clean without constant street sweepers, had no graffiti, and, despite being so welcoming and open 24/7, had no homeless people sleeping on the benches or police patrolling the streets.

It felt calm and peaceful, interesting and reverent. And, like many places that touch the soul, difficult to describe.

People go to Lourdes for miracles. I’m not sure whether I got a miracle, but I don’t feel like I was there looking for one (though, I would not turn away a healing miracle, in case anyone is listening!). I just felt like I had to be there. Anne and Claire from Scotland said that it appears I was “invited by Our Lady” and that felt right – that I was invited there and just had to go. The pull was so strong. The reason may not be clear to me, but that is okay. I did what I had to do, and I hope I did it well.

It is clear to me that I couldn’t have done it alone. I appreciate your prayers and good wishes, which give me energy and keep me going. I appreciate all that you did to take care of the kids (those of you who are local) – thank you for that. They had a great week and felt loved and secure.

Thank you for all that you continue to do for all of us, and thank you for sharing all this with me. One of the Stations of the Cross depicts Simon of Cyrene helping Jesus carry the cross, and making me think of the ways that others help us carry our burdens. You truly do that. This path would be entirely different and way more difficult without you. You make a difference in our lives.

Chemo on Tuesday….

Love, Marie

P.S. If you are interested in the stories from my experiences at Lourdes, I will be posting them on
http://adventures-in-colon-cancer.blogspot.com/
or let me know if you prefer an email.

To keep them readable, I wrote a different post for each event. They aren’t all there as I write this, but I expect to have them up soon.

If you want to read only one story, I would recommend the one on the baths:
http://adventures-in-colon-cancer.blogspot.com/2010/09/baths-at-lourdes.html

Lourdes: The Baths

The Baths
Friday, September 24, 2010
8:00 a.m.

Our Lady of Lourdes identified an underground spring to Saint Bernadette. Today, you can bathe in the water from that spring. I decided to do this. Everyone warned that the women’s lines were hours long. They advised me to arrive well before it opened and to plan my day accordingly.

The baths were open from 9 – 11 a.m. and again from 2 – 4 p.m. Since I had only one day available to do this, I decided to aim for the 9 – 11 slot, using the 2 – 4 slot as backup. I didn’t know what they did at closing time; did they send everyone away who had been waiting all that time? I planned to get in line by 7:15 a.m. At that time, I may not be first in line, but I expected to get in.

When the alarm rang the next morning at 6:30, the baths suddenly seemed less important than getting a bit more sleep.

Dragging myself out of bed at 7:30, I was glad to see that last night’s thunderstorms were over and, while the skies weren’t clear, it stopped raining. I put on the only outfit I had: a sleeveless summer top, a light cotton sweater, a pair of tights and flat shoes. I grabbed my raincoat just in case I needed it.

When I reached the baths at 8:00 a.m., all 17 covered rows of seating (with 12 – 14 women each) were full, so I filed in behind about 20 women standing in line outside between two white metal bars. The bars were set far enough apart for one person to stand comfortably. Two could squeeze side-by-side.

As I waited, a few drops of water fell on my head from the trees above. No big deal. I looked at the sky: clear on one side, and dark and foreboding on the other. Ha – like life. I hoped that the clear side was pushing out the dark one.

The two women ahead of me looked more like they were going out to a club than to the baths. In their mid to late twenties, tall and thin with long, straight hair, stylish clothing, nice make-up and finished nails, they held themselves confidently. One of them took a tissue to carefully wipe off the railing before she leaned on it. It reminded me of something my mother would do, and I briefly thought, they must be Italian.

Soon, I noticed the conversation of the three Italian women behind me, who were about my mother’s age. They stood on the shorter side of average and a bit stocky, well-dressed with beautiful jewelry and handbags.

My Italian is rusty and like a toddler’s at best, but it sounded like one of the women needed to go to the bathroom. So, I moved aside to let her pass, as did all the women ahead of me.

She was almost to the front of the line when, whoosh – a thin woman with short grey hair who stood all of 4’11” blocked the way. Standing squarely next to the metal barrier on her right, she slid four long, thin candles across her stomach until they reached to the metal bar on the left, effectively blocking the narrow pass. The Italian lady talked with her, but Candle Lady apparently did not understand Italian. So, Italian Lady walked back along the line to return to her spot.

In my observation, every group of Italian women has one strong personality who directs the group, and this was no different. Strong Italian Lady said, in no uncertain terms and in a slightly demeaning tone (loosely translated), “What do you mean, she said no? You just go back there, say, ‘Mi Scusi’, then you walk by.”

They argued a bit over this (as the Italians I know do) but Strong Italian Lady won and Bathroom Italian Lady tried again to make her way through the line. And again, when she reached the Candle Lady, whoop, the candles came out and blocked the way.

This time Candle Lady wouldn’t talk or even look at Bathroom Italian Lady. She just stood there facing forward, holding her candles sideways.

I thought this was hilarious and giggled out loud. Strong Italian woman started to talk with me. In Italian.

“Non parla Italano,” I said, meaning to say, “I don’t speak Italian” but I actually said, “You don’t speak Italian,” essentially confirming the fact that I don’t.

“Ah, comprende Italiano, no?” she asked with a knowing look. “Un poco?”

“Pocino pocino,” I replied, making a motion of “tiny” with my thumb and forefinger.

Bathroom Italian Lady returned again, defeated and annoyed.

More words, but this time from the girls in front of us, confirming they were Italian. Gorgeous Strong Italian Girl spoke up.

“That woman is crazy. You have to go to the bathroom.” She waved her hand sharply at the gentleman monitoring the line, as if she wanted to order a drink at the bar, and he came right over.

“She needs to go to the bathroom.”

The man told Bathroom Italian Lady to come with him, and she left the line and followed. A few minutes later, as she made her way back to us through the line, she shot daggers with her eyes at Candle Lady. Such good Catholics. I guess we all have room for improvement. As for me, it was good for another laugh.

At some point, a woman started to lead the rosary in French, with intermittent hymns. I love the rhythm of the rosary in any language. It is repetitive and meditative and speaks to something my soul, even if I don’t know what they are saying.

After an entire rosary in French, another woman started one in Italian. The Italians around me responded, almost as in a Pavlovian way.

At one point, the Ave Maria was sung, and everyone automatically sang the refrain.

The rosary continued in French and Italian, French and Italian, interrupted only by hymns, until the doors opened at 9:00. A man gave instructions in French, and several of the women seated in front moved into the bath area.

Though the line now moved ahead, the Italian women and I were still outside, now standing in light rain. Strong Italian Lady shared her umbrella, then offered a chocolate square to me. I said gracie for the umbrella and no thank you for the chocolate, clearly offending her.

“Oomph” she said, simultaneously brushing me off with her hand while returning the chocolate to her designer handbag. I recognized that sound / motion pair. It meant, “Fine. Your loss. See if I offer you anything else.” Fortunately, she kept her umbrella up for me. I was starting to get cold and didn’t want to be wet, too.

The irony was not lost on me that I was headed to a bath. With water.

About five or ten minutes later, the line moved forward again and we could sit on the benches under the roof. I sat between the two gorgeous girls from Naples and the three older Italian women. They occasionally conversed across me, and I loved hearing all the Italian.

By now, I was definitely cold. I pulled a hat and gloves from my handbag, which helped a little but not a lot. They were letting women move ahead at roughly the rate of 4 women every 5 minutes, so the line kept moving enough to give me hope. Each time, we would either stand and walk to our new seats, or shuffle our butts along the bench, depending on how far we got to move.

The rosary and singing continued. Women got up to go to the bathroom and returned to their seats. Though it was still pouring rain, husbands arrived and waved from the walkway to check on their wives in line.

When the Italian women’s husbands arrived, one woman said critically, “Look at him. No umbrella. Crazy.”

It made me smile that her welcoming comment about him was basically a critical one, and that he obviously didn’t really mind.

When I was about halfway to the baths, a woman on the bench in front of me waved me toward her. I leaned in, wondering what on earth she could need from me but happy to help. Smiling, she grabbed my upper arms and rubbed them to help me stay warm. I didn’t realize that I actually looked as cold as I felt. I considered leaving to take a hot shower, but the line moved just enough to keep me in it. Besides, if all these women were doing it, I can do it.

Later, Strong Italian woman reached over to me and rubbed my arms and back. It reminded me a little of a story I once saw about the Holocast: As the women were headed to the showers, the older women took care of the younger ones. I tried to push that image out of my mind.

After three hours of sitting, standing, talking, rosaries and hymns, we made it to the front bench. I had no idea what these baths would be like, but I suspected they would be cold. It is spring water, after all. I wasn’t excited about more cold. I don’t even like a cold swimming pool on a hot day. I assumed they would be outside, in the rain.

But, the next step was inside to change and there, things felt like they moved a bit faster. I waited so long to get here, I wanted it to go a bit more slowly. But, not a choice.

A woman with a warm smile appeared from behind a curtain and beckoned me into one of the changing rooms. As I approached, she asked what language I speak. A woman who spoke English with a lovely French accent suddenly appeared and led me further into the room. It felt like a group changing room in a discount women’s clothing store, except that each of the five women changing had another woman behind her, holding a blue sheet for privacy.

My helper gave instructions on how to change (“take everything off, and if you are wearing a bra, hold it in your hand”) and pointed to the hooks for my clothes. She held a blue sheet around me for privacy while I undressed, then wrapped it around my shoulders and told me to sit in the plastic chair that is under the clothes hooks.

I noticed that the floor is surprisingly dry for a bathing area through which hundreds of people just passed. Also surprisingly clean.

My sheet is a bit wet, though, and it grosses me out to sit in a plastic chair that held who knows how many naked butts. I opt to stand. I now feel warmer than I did outside, but still a little chilled.

My helper repeated instructions that I saw on a wall chart: Collect your thoughts and choose an intention. Stand in front of the curtain, and I will be called when it is my turn.

I tried to focus on my intention, but I I could hear a big splash in the bath. Did someone fall in? Do we need to jump in? It made me wonder what was behind the curtain. I now assumed that I would step outside into the rain and have to jump into a big, deep puddle with lots of other women.

I was next. The curtain opened, and I was led through.

I’m not so good at going with the flow and like to know the lay of the land before I dive into anything, so I was a bit disoriented. Plus, I wanted to take everything in and it all just seemed to be moving so quickly.

Thankfully, the baths were inside! There were walls around it, and I was the only one going into it right now. The bath itself was stone, long and narrow in front of me, with two steps leading down into it. I wondered if I could just do a step or two, if that would count or if I would have to take the plunge.

The water was surprisingly clear. I don’t like hot tubs because they either feel like I’m getting into someone else’s bath water, or that I am soaking in chemicals. But frankly, I have seen more backwash in my glass of drinking water than there was in that tub, so I was amazed and felt okay about going in. Not that anyone would have asked me.

Two women, one standing on either side of the bath, each held one side of a twisted white sheet, wringing it out together as the water fell into the tub. I was relaxing a bit, then surprised as the woman who led me in now held my shoulders while she reminded me to focus on my intention. She directed me to raise my right arm, which I found a bit confusing, so she did it for me. Then suddenly, the three women removed the blue sheet and replaced it with an ICE COLD WET ONE.

I was adjusting to the shock of having a cold sheet wrapped tightly around my body when I was told to take the first step into the bath.

I did and, as cold as the water was, the sheet was colder and distracting me. I really wanted to get rid of it and just do this without it on. I also wanted to go slowly into the bath, like I do with a cold swimming pool, but the other two women (who were previously wringing the sheet) grabbed one arm each and insistently led me into the deeper part of the bath. One of them told me to sit while my brain responded “Are you crazy? This is freezing!” Then they told me to relax and basically pushed me down until I was sitting in the bath.

I was so focused on freezing that I didn’t exactly revel in the experience. I think that I briefly remembered my intention but definitely forgot to say the prayer I was supposed to say while in the water, and before I knew it, they pulled my arms up to guide me out of the bath and were saying the post-bath prayers of thanks to Our Lady of Lourdes and to Saint Bernadette. I was supposed to say those with them, but I was more than two steps behind.

They put my bra on, replaced the blue sheet, and guided me through the curtain to the dressing room.

When I started to get dressed (again, with someone holding the blue sheet for privacy), I noticed that most of my body was already dry. How on earth was that?

I walked out of the bath house alone. It was pouring outside, and I had no umbrella. Cold bath. Cold rain water. Water was everywhere.

Lourdes: In need of healing foods

Lunch break

Thursday, September 23, 2010

12:00 noon

I stopped at the bookstore and bought a few small books, then met Tiron for lunch. He had done a tour of Bernadette’s life that morning and recommended it for me for the afternoon.

After all the walking for the Way of the Cross, I didn’t feel like wandering the city. So we decided to try the hotel restaurant for lunch.

The hotel restaurant had two salads. One had lettuce, eggs, tomatoes, duck and pine nuts. I could eat the lettuce and pine nuts. The other had lettuce, goat cheese and olives. I selected the first.

The pine nuts arrived charred, but the service was great. The salad was large enough to hold me over for the afternoon, and I cheated on my diet with a bit of mediocre bread.

For a town that attracts people who need healing, the food could be healthier.

Lourdes: The Way of the Cross

The Way of the Cross

Thursday, September 23, 2010

10:30 a.m.

The church had a printed schedule of events for the day (yay! I love having things written down!), so I took one, and Rose, my English-speaking guide, walked back with me to the statue where we first met.

I had a lot of questions about events I heard of but were not on the schedule, and she answered many of them. I wanted to know where the Grotto was, how to get holy water, and any information about the baths.

So, she walked with me to the Grotto, which was sort of on the side of and below the cathedral. Past that were the baths, and I could see women waiting there. She described where to find the water from the spring.

Then she had to go to her next job, and I needed to find Fr. Patrick if I wanted to do the Way of the Cross.

Five of us joined Fr. Patrick for what I think of as the Stations of the Cross. He asked if we wanted to do the High Stations or the Low Stations. I didn’t know the difference.

Turns out, high and low were literal terms. The High Stations are on a mountain, so you walk up high. I didn’t get a chance to find the Low Stations, but I assume there is not as much climbing involved.

We started up the hill. Fr. Patrick is from Ireland and full of stories and jokes. We reached the first station and stopped there.

The stations are beautiful gold sculptures and a bit modern. They are positioned on the hill above the path. This first one had steps leading up to it, and I saw women on different steps, kneeling, praying, and then WALKING ON THEIR KNEES to the next step. On the next step, they stopped to pray, and again, walked on their knees to the next step.

On one hand, I kind of hoped he wouldn’t ask us to do that. There were more steps than I could count, and we’d be doing stations until dinner if every stop was like this. On the other hand, I’m still the person who believes that extra credit is part of the test, and I wanted to see if I could do it.

Well, we didn’t do the steps, we stayed at the bottom of them. Father Patrick started the pattern he would continue for all the stations: Read a brief passage from his book about that station, then tell a modern-day story of what that station means to him.

I remember one in particular right now. For the station where Jesus was nailed to the cross, he said that it makes him think about people in wheelchairs, or hooked up to machines. They can’t leave those, and are basically nailed to them.

He asked us to do the walk in silence, and gave us this prayer as a suggestion for reflection while we walked:

Alone with you, O Lord, I journey on my way.

What need I fear when thou are near

O King of night and day.

As we walked, I couldn’t seem to remember the words. I was feeling a little inept.

At some point during the stations, I always start to cry, and this was no different. Now I had no prayer, and tears. Ugh.

The last two stations are on the downhill slope. The station depicting where Jesus is buried is literally in front of a cave in rock in the hill. Not only is it quite moving, I thought it was cool that the topography worked out that way. And the final one, where Jesus is risen, also uses the natural rock in the hill.

At this point we were done, so I asked Fr. Patrick one more time for the words to that prayer (and wrote them down), we said our goodbyes and returned on our own.

Lourdes: The English Mass

The English Mass

Thursday, September 23, 2010

9:00 a.m.

We climbed the steps to the second floor of what used to be a hospital building, then turned left into a room where the English Mass was held. Later in the day, I noticed that the French, Italians, Germans and other Europeans have their masses in the Cathedral, the Grotto, and other places that are larger and feel more like a church. But there are fewer English-speaking pilgrims, hence, a smaller space can be used.

I took a seat a few rows back from the front. Father Brian (pronounced Bree-un) started Mass by acknowledging Padre Pio, and the connection to that familiar (to me) Italian saint helped me to relax.

Fr. Brian’s friendly approach built community throughout the Mass, at various times telling jokes, having us introduce ourselves, and asking where everyone was from.

I was surprised to find that there were only a handful of us from the U.S. Actually, I didn’t see any other hands raised (besides mine), though there must have been at least one other. Lots of folks from Ireland, England, Scotland and Wales as well as Singapore, Malasia and India. I saw the nurses we met at the café the night before, who had recommended the Day Pilgrimage to me.

There were three other priests at that mass: one from India, one from Malaysia, and…I forget where the other was from. They briefly introduced themselves and had various roles leading the Mass. None of the hymns were familiar to me, but everyone else seemed to know them.

The best part: When I left, there was a written schedule of options for the day. I love that!

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....

-----------------------------

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

An Encounter in the Waiting Room

I continue on the raw food diet. I'm not perfect at it, but I do stick to it most of the time. I try not to be obnoxious about it, though I may have crossed a line last week.

I sat in the waiting room near a family of four. The father was in his late 50's or early 60's. He was joking about waiting so long to see the doctor that they probably had pajamas waiting for him. I looked up and laughed.

From there, the parents and I started chatting about the things most chemo patients share. He looked good to me, but shared that he lost 40 pounds so far. His wife told me that she was 59; I could feel her positive energy, as well as her disbelief that they were even here. His daughter and son, in their late teens or early 20's, sat next in the line of chairs, each occupied by a book or their iPhones while they listened to our conversation.

We chatted about the length of the appointments, the fact that chemo wasn't working for him, how we both hate the IV fluids they give for dehydration. She was more factual, though cheery. He tried to make light of it all.

At one point, the snack cart came around, filled with items that I used to think were totally yummy: roasted peanuts, Lorna Doones, potato chips, apple juice, V-8...I declined. The family members each took a few treats. They advised me, in a friendly way, that I should take what I liked and save it for later.

"Like we just said, you don't know how long you'll need to wait here."

In response, I blurted out, "I'm not doing sugar right now."

They all stopped; even the kids looked directly at me. They all had hope in their eyes that broke my heart. I recognized that feeling; I do it myself, looking for a "cure" that might be out there, something I don't yet know or haven't heard about, a lifeline.

After what felt like a long silence but was probably only a moment, the wife softly asked, "Did the doctor advise that?"

I wanted to reassure them. Even more than that, I wanted that look in their eyes to go away. Plus, what do I really know. I am trying everything I can do that feels right to me, but maybe it isn't right for everyone.

"No, this is something I'm doing on my own." It is true, but even as I said it, I wondered, should I share more information? Is this something that could help him?

Then the father joked, "Sugar will make you even sweeter."

Again, something I recognized. The patient telling a joke to make everyone else feel better.

It broke the mood and we chatted lightly again until we were all called back into our doctors' offices.

As I was leaving my appointment, I caught a glimpse of them in their doctor's room. Their mood was no longer light, there were no smiles, and I said a silent prayer for them as I walked away.

Chemo status quo; Friendships and Memories

This has been a really great two weeks. My last chemo (two weeks ago) went, well, as chemo goes. Overall pretty smoothly.

My hair has thinned so my head gets cold, One of the women who works there is Muslim, and she taught me how to tie a headscarf. And when I went to MGH for my injection on Friday (I get an injection to help increase my white cell count), the nurse did an amazing Reiki healing. So the staff continues to be really supportive.

I got those awful stomach cramps again this week, but I was able to manage them with meditation. It was pretty amazing. I isolated myself from everyone else and concentrated only on my breathing. At one point, I found that I could separate myself from the pain, and, in that calm, I started to notice things. For example, I started to notice the feelings that would happen immediately after the pain would subside, which I never noticed before. And I noticed that the pain moved, slowly, along the path of my intestines. Yes, I was still out of commission for a few hours, but it was way more manageable than It had been in the past. I would love to be able to replicate this with any other pain -- it was pretty cool.

Other that that, it's been an amazing two weeks. Lots of celebrations and visits with dear friends. I feel so lucky to be able to do that, and to share these experiences together.

Because of that, I started to think about our lifetime of experiences with so many different people, and the subsequent stories we all have about each other. At the risk of letting you know how goofy I was at the age of 12, I share this email from a sixth-grade classmate. He and I haven't been in touch in YEARS, and I haven't thought about this event, oh, probably since it happened, but it was a memory that came right back to him:

-----
We're on a holiday road trip, and I heard a song on the radio that brought back a memory... Remember the song "Billy Don't be a Hero"? Well, I recall that in sixth grade we had to pick a song and make drawings that told the story of the song, then stand in front of the class and flash our drawings cue-card style while the song played. You...chose "Billy Don't be a Hero" and every time the word "Hero" came up, you had a drawing of a sub sandwich, very well drawn with a colored pencil. I don't even remember what song I chose...
-----

If someone asked about sixth grade, I don't think I would have recalled either the assignment or the song on my own. But, through this shared experience, he obviously holds a story of my life and a piece that is truly me from that time. I was really touched by this and suddenly started to notice it everywhere.

I was honored to witness this at a party this weekend, where the host couple had friends from all stages of their lives. I got to watch my three-year-old son at parties with his friends from school, where their comfortable and fluid interactions show how deeply they already know each other. And I marveled as my friend from third grade, who recently returned home after a one-month visit (along with her husband and two daughters - how amazing is that!), randomly recalled shared experiences that are like gold.

I'm grateful for all these friendships and the memories those friends hold, events that I either don't recall or that reside in the dark, dusty corners of my mind and heart. Those are places I don't typically explore without a professional. It's way more fun with a friend.

Thank you for all the memories you hold, even as you might recall one right now! And I hope that, soon or during this summer, you can spontaneously go to some dark dusty spot in your heart with a friend, find a treasure and smile, and barrel ahead to create new memories!

Thank you for all the prayers and good wishes, and keep them coming!

Love to you,
Marie

Life is Good

Sometimes things can be so good that it is scary. I feel like I am at this juncture where all your prayers and support are pulling things together, and I can't even describe how appreciative and awestruck I am. I feel like the power of this group can move mountains, and I am so honored that you are moving this particular mountain. You are recalibrating my sense of what is possible. What a gift.

The big good news is that my CEA level (blood tumor marker) is down to 4.5. Normal is 2.5 and below. I am thrilled that this is moving in a healthy direction!

I'm not sure what specific thing is doing the trick. There is the chemo combined with all the prayers on my behalf, Chinese tea, raw vegan diet, juicing, wheatgrass juice, yoga, mind/body work, acupuncture....exercise should be in there, too, but I'm lacking in that area. In any case, I will keep doing all of that, and hope that you don't mind continuing to do whatever you are doing, whatever you can do. Thank you.

Your support leading up to my PET CT was immensely helpful. I think that was more stressful than I realized, and it made me feel really fragile at that time.

After my PET CT, the plan was to talk with the doctor in D.C. about being a candidate for HIPAC surgery. We still want to talk with him, but since things are going in a good direction, it is hard to sign up for such a huge surgery. I'm glad that it feels a bit less urgent.

This past chemo week was like the others, including the intense stomach pain. Thankfully, it passed, and I didn't need to go to the hospital. The pattern is familiar by now; even the conversations / arguments that Tiron and I have about my condition at different points of the week are becoming predictable. And then the good days help me to forget all that.

This weekend, we went to the amazing James Taylor Carole King concert. I arrived loving James Taylor, and I left wanting to BE Carole King. She is so strong, energetic, inspiring, talented and clearly a focused worker. She was smiling, upbeat and involved in the entire concert. If she wasn't playing piano, she was singing with the backup singers or dancing around the stage. For me, she made the show come alive, and helped me to see how being fully present and involved can strongly influence the experience of others.

And her hair -- thick and curly. I want that, too!

Just as I underestimated Carole King's sheer vibrant presence, I'm often wrong about people. I once tuned into Oprah to watch Randy Pausch (of The Last Lecture fame) but Kris Carr was the first guest. I thought, "who on earth is SHE anyway?" but I listened. She sparked my interest in juicing greens and in Hippocrates Health Institute. Since then, I've attended her workshop as well as Hippocrates and now believe that Kris totally rocks.

I'm constantly reminded that there is more to someone than meets the eye. I'm also learning that is true for other things, too...like cheating just a bit on a food regimen.

I've been eating raw foods and juicing greens and wheatgrass pretty religiously for the past couple of months. About two weeks ago, I felt confident that my body had a huge stockpile of greens and I could eat one small piece of cheese. It tasted good. It felt creamy. It really hit the spot. How about just another small piece? And so I started down the slippery slope. Over a few days, I finished all the cheese in the house. Thank goodness. And, who would notice anyway?

Then I went to my acupuncturist. At the start of the session, she pressed on different points on my legs. When she pressed on a point next to my knee, it felt sore. Our converstaion went something like this:

Me: Wow, that's sore. Feels like a black and blue mark.
Marisa: Here? (she pressed again)
Me: Right there. Yes. Weird. It didn't hurt until you pressed on it.
Marisa: That point processes dampness. Like, dairy. Dairy is a damp food. But you are on a raw food diet.

Busted.

So, I'm recommitted to my diet. No one else might notice the missing cheese, but that little thing must make a difference in my body.

Talking with some girlfriends, one of whom is a nutritionist, we noted that all the diets that are considered to be healthy also come from tightly knit communities, where the focus is not the individual, but the community. So maybe it isn't the diet. Maybe it is the power of being part of a community.

I am grateful for the power of this community for me and my family.

This week, I completed my participation in a prayer survey as part of a research project at the hospital. The questions in the final survey made me look anew at the support I get from you. Each time I answered a question like, "how often do you feel alone," or "is there anyone you can turn to when you are sad," I renewed my gratitude that you are in my life, in whatever way you can be in the moment. No matter what part of the world you are in, I feel a connection. That gives me energy, and makes me smile.

So while the lyrics from "You've Got a Friend" might be applicable here, these Carole King lyrics (from Beautiful) speak more loudly to me right now:

You've got to get up every morning with a smile on your face
And show the world all the love in your heart....
You're gonna find, yes you will
That you're beautiful as you feel

I hope you are feeling particularly beautiful today.

Much love,
Marie

P.S. Chemo tomorrow. Thank you for any prayers and good thoughts, both for a good chemo week as well as good results!

Good news from PET CT

Writing this before I get hooked up for chemo....

Thank you so much for your good thoughts and prayers! I JUST got the results of my PET CT and they are good -- yay!

What exactly does that mean?
Well, we know there was tumor left behind in the surgery, but if it is still there, it isn't big enough to show on PET CT. That is a big relief.
There is a new spot on my liver, but it doesn't appear to have the same characteristics that my tumors typically have, so they recommend a follow-up MRI but aren't too worried about it. Again, whew. Okay, not total relaxation, but could be worse, so I'll take it.

My type of cancer also shows up in the CEA levels in my blood, so I get that tested every month. Last time, it was 6.4. Normal is below 2.5. So, there is still stuff in there, but at least it is smaller than it was. I asked them to test it again today. I won't get the results of that until either next week or next chemo. They don't like to give these results over the phone, but many of the folks here will tell me, kindly knowing it is more anxiety-producing for me to wait.

All good things.

Thank you for keeping me company on this journey, and for being there to share this news.

Lots of love,
Marie

PET CT this week

First, I want to ask for prayers for my friend and former colleague, Don Arnoudse. He is having surgery for prostate cancer tomorrow morning, June 8.
To be specific, please pray for peace, calm and grace as he heads into the surgery, for the surgery to successfully remove ALL the cancer, for a full recovery after the surgery, and for a clear "call" from the divine for the best full use of him to be in service to others after his recovery.

I know that he would really appreciate your good thoughts and prayers on his behalf.

------------------
As for me, I'm doing really well. I really appreciate your e-mail messages and I am quite behind in answering them. But your words stay with me; I think about them and re-read the messages. I just have trouble typing right after chemo, and then it takes awhile for me to catch up.

Chemo week wasn't fun, of course, but it was okay. I had one day where I didn't get out of bed, but that was more due to laziness than pain. Lying in bed with my chemo bag dangling from my chest, I kept weighing the things that I would need to do before I could even get to anything interesting:
-- Clean up all the hair I lost the night before,
-- Drag the bag (I know, I carry it, but it feels like a ball and chain) with me to the bathroom,
-- Change my ostomy bag,
-- Tape plastic wrap on my chest to keep shower water away from the connection between the chemo tube and my body
-- Shower, then clean the hair out of the drain
-- Comb my hair, and get bummed out by all the hair on the comb.
-- Figure out what to wear that accommodates the whole shebang

Just thinking about it made me tired, so why get up.
Of course, by 4:00, I was grossing myself out, so I hauled my reluctant body out of bed and did the whole routine. When I was finally ready to go for the day, it was dinner time! Next time, I'll just get up.

I had that debilitating stomach pain again, but it was only one day. Yay!

All is well now, and it actually takes effort for me to remember all those events, because they feel like they are in my distant past. Overall, it's been a wonderful week filled with friends and fun events. I even got to go to a Harvard reunion -- I didn't go to Harvard, so who'da thunk I'd ever be there...what a thrill!

At the same time, I'm a little apprehensive about the week ahead. My chemo schedule for this week will shift by a day. On Tuesday, I have a PET CT. It is a normal check point in my chemo path, where they use machines (and radiation) to look inside my body for any "hot spots" that might be tumors. My blood numbers look good, so I am both optimistic and bracing myself. Fortunately, I'll get the results on Wednesday.

Following my meeting with the doctor on Wednesday, I'll have chemo. This is instead of my normal Tuesday chemo. Then I will wear the chemo bag from Wed - Friday, and get an injection on Saturday. I like to think that I handle change well, but the prospect of having different nurses on a different chemo day is almost more anxiety-provoking than having the PET CT. All that said, I am relatively calm.

Of course, life isn't all chemo. Last week was Julian's last week in his preschool Yellow Room, and I was lucky to get to go to the events. This week is Aidan's last week of first grade, with lots of activities planned. I will miss the parent breakfast, but I figure it will be okay.

How the kids deal with this has been top of mind lately. Often, I simply push it to the back of my mind and focus on the day-to-day; the logistics and emotions can be overwhelming, and I just want us to be a normal family. This week, though, I felt like "death of a parent" was everywhere I looked, in newspaper articles, radio shows, blogs, and even news from a friend who knew a mother who died last week, leaving her school-aged children. So I've had to face it more directly, though it is a little comforting to know that we are not alone.

I haven't yet found alot of information on how to best help children through a situation like this. Adults have a difficult time navigating a parent's illness and potential death. What about children, who do not have the life experience, longer-term relationship or perspective of adults? My current mission is to learn more about how to help our children through this period, regardless of where this path leads.

I think about this in two ways: how to help them with their feelings right now, and how to help cushion the blow for them if something should happen to me.

As for dealing with their feelings right now, Tiron and I stumble through that day by day. Sometimes things are normal, sometimes we wonder if things are normal (we all have our "weird" moments, just in regular life), and sometimes, things are pretty heavy and we muddle through.

In case something should happen to me, I wonder how to best build a net that might catch them and cushion the blow. As hard as it is for me to think about this, I realize that it would be even harder for them if I don't. Plus, I don't know what kinds of nets they might need. For example, would they be interested in the stories that a mother might tell them when they were older, like what they were like as babies and the strengths we saw in them at an early age? Would they be interested in factual information about me? Stories about our times together? If you have any insights into this, please send them along.

Right now, I look around for clues. Though Tiron would be there for them, and I think he would do a great job, I do wonder what holes would exist and how those might be filled.

For example, almost every Friday, I attend an assembly at Aidan's school with the pre-K through fourth grader students, and other parents. The fourth graders take their turn reciting a poem in front of the assembly, a milestone in their time at the school. I love this part of assembly. I listen to each of the kids, thinking about why they chose the poem they did, how they practiced for this moment, what their speaking style is. I love seeing the families as they cheer for their children. And I wonder, if I am not here, who will listen especially to my boys, to help prepare them and to cheer them on?

A couple of months ago, a friend came with me to assembly. I sit with the parents, not with Aidan, but she grabbed a chair and he sat on her lap. He was incredibly comfortable with her, and she was completely present with him. Watching them together made me relax a bit and realize that she would be there for them, and that maybe, in some way, things will be just fine.

And I started to think -- whether or not I am here, hopefully our children will learn more about me through stories from Tiron and our friends and family who know me in different ways. This gives me a new perspective on the time we spend together with friends, how we get to know each other through the smallest of interactions, and how we become part of each other as time passes. Why we choose the jobs we did, whether we choose to exercise or chow down (or both), to read a book or have a party, how we talk about the major and minor events that are important to us, the decisions we make about how to spend our time -- we learn so much about each other in so many subtle ways. We become interconnected through these conversations and interactions, and we hold the ongoing stories of each other's lives.

Deep inside, I feel like that is what will carry them both through. The social web we create will hold them, always. And maybe that is the strongest net of all, for me as well, no matter where this path leads.

Thank you for helping us all through this time, for being the net that catches us. Thank you for always stepping in, even when we don't know what to ask for. Thank you for being so steady for us in an unsteady time, for giving of yourself so unselfishly, and for keeping your humor along the way.

Prayers to you for a great week, and thank you for your prayers for me!

Love, Marie

Some ups, some downs, and the power of words

Chemo tomorrow (Tuesday). The ball gets rolling at 7 am.

It's been a great two weeks in so many ways: parties to celebrate graduations, reunions, life (literally went to a Celebration of Life party), and the fact that we can dance with our 3 year old. We had a quick but fantastic trip to NYC with the boys, visits with friends....I feel so lucky to be well enough to enjoy all that.

My last chemo went smoothly. Typically, I have chemo on Tuesday, wear my continuous infusion pump on Wed and have it removed on Thursday. Also on Wed and Thursday, I take anti-nausea medications. But on Thursday, I felt so well that I forgot to take them. Woo hoo!

Never fear, though -- life is not without its checks and balances, and I got sick the next week (my non-chemo week), with the same thing that sent me to the ER two weeks prior. Late Monday night, I could feel it coming on, and the stomach pains kept me from moving around. I stayed up all night, trying to keep everything down. I hate getting sick, and I'm a wimp with pain. I also knew that, if my husband caught wind of this, he would insist that I go to the ER, and I preferred to stay home.

At 5:30 a.m., the gig was up. And, my husband heard me.

He was out of bed like a shot, showered and dressed before I was done. He appeared like Superman on the scene, standing over me with his hands on his hips. Since I was alternating between praying to the porcelain gods and being doubled over on the nice, cool, clean bathroom floor, I really wasn't in the best position to argue. Of course, that didn't stop me.

"They will just do tests and observe. It is way easier to be sick at home. I'm not going. And you can observe me here."

"I AM observing you. You need to go to the ER."

I could not imagine laying on the bathroom floor of the ER. I had to stay home. I was convinced that this would run its course. At the same time, the voices from the ER docs, two weeks ago, echoed in my head. "You could have a bowel perforation and die."

I made my choice to stay home, but these words running through my head scared the crap out of me. (Pardon the rectal cancer joke.)

Thankfully, my discomfort ran its course, I avoided the ER, and got to recuperate at home. I felt more relieved than right. And more than a little lucky.

The rest of the week provided lots of opportunities to reflect on the power of words. Mostly, I live in a small circle. When I leave my house, I primarily interact with friends, or friendly people who are affiliated with my sons' schools, or neighbors. When I venture into Harvard Square, I encounter the earthy-crunchy people of Cambridge, who typically like to live and let live. It's all peace, love and rock and roll, most of the time. I admit that I prefer to surround myself with people who I generally like, and, while I think I am open to anyone, I have few random encounters with people much different than my social circle.

Feeling strong one blue-sky day, I went grocery shopping for the first time since January. My parents had a small grocery store when I was growing up and we all worked there. I LOVE shopping for food, and I chose a grocery store outside Cambridge. Walking among all the fresh fruits and vegetables, checking out the olives and cheeses, and smelling the prepared dishes was a completely sensual experience for me.

I was already overjoyed, and it got better: Leaving the store, I ran into two separate friends in the parking lot. So fun!

Then, for about a second, I blocked a woman driving her car. She was clearly angry about it, and I really didn't mean to annoy her, so I apologized. In reply, she screamed, "Would you shut up?" Wow. Suddenly, I marveled that this wonderful shopping and social experience, even the sunny blue sky, could be totally wrecked by one person's strong words. While it still stung, it was, luckily, so out of proportion to the situation that it was hard to take it too personally.

I thought about this for a long time over the next few days and looked at it from lots of angles. Harsh words and feelings transfer strong negative energy, and good words and feelings transfer positive energy. But why do the bad ones have such staying power? Why can they crush the good feelings? I don't know. Maybe the good ones are more fragile, or maybe, when those good feelings come our way, we have a responsibility to protect them and keep them alive and going.

Once I returned my focus to the many good parts of that day, her words started to lose their sting.

On top of the words, I realized that I carry around alot of assumptions I didn't even know I had, like...
...if I am nice, people will be nice to me.
...if I take care of my body, I won't get sick.
...tomorrow will mostly be the same as today.

Well, apparently, I'm not really entering into valid agreements with the universe!

But I'm happy to enter into agreements with you. I admit, you are part of my circle of choice, so it isn't a huge risk. But here is one: I promise to take care and nurture all those good feelings and prayers you send my way, so that any little good thought, prayer or wish has the potential to grow, and I will send those feelings right back to you. They truly carry me along, and I appreciate any you send for good chemo this week!

One short, completely unrelated story:

This morning, the boys asked if they could catch a rabbit in our backyard. I figured that was harmless and said yes. To my astonishment, they returned about five minutes later with joyful expressions and a baby rabbit.

When I asked why they took the baby rabbit, my six-year-old replied, "Because I can't catch the bigger ones."

I love that he knew his limitations and was undaunted by them, figuring out a way to go after what he wanted. I love seeing the happy eyes of both boys, filled with the hope that they would get to keep the rabbit. (They did not - we returned it to its mama.) And I love that both boys worked together to do this, even though it completely freaked me out to see that baby rabbit in my house.

I hope you find a way to catch whatever makes you happy, and that you get to keep it, too.

Love, Marie

P.S. I need to mention that a friend, Andrew, passed away last week from colon cancer. Three of us were diagnosed with colorectal cancer around the same time, though we've each had our own journey. He was younger than I am, and has three small children, around the same ages as mine. It is sobering to think of the ripple effects of this disease.