Love and light and no chemo

Thank you for your responses to my last message. Whether your response celebrated my chemo holiday or questioned whether I was being aggressive enough, I appreciated your thoughts and concern. Each one helped me to sort through my emotions as your statements echoed all the different aspects of what I was feeling. Thank you.

These past two weeks have been amazing in ways that I couldn't have predicted. Sure, there was April Fools' Day - great fun! - and Passover and Holy Week and Easter and all their marvel. 

And I started a learn-to-row class! Living just a few steps from the Charles River, this always seemed like something I should do but could never pull it together. For starters, I don't consider myself to be that athletic. Any new sport I learn has to have a social component to draw me in. Taking a class by myself is not my style.

Then one of the moms at my sons' school arranged a learn-to-row class, inviting other moms from the school. So, a sport I want to learn with a group I mostly know. Only hitch was that the class meets every week, but with no chemo, I can do it! We started this week and it was a blast.

But the biggest thing that happened during these past two weeks was a shift inside that moved me to another path, and I am going to invite you to join me on this path, if you are able and interested.

To take a step back: I had been having this fabulous experience of everything just clicking in my life. When I asked a question, it was mysteriously answered. When I thought of someone, they were also thinking of me. When I wanted to do something, the opportunity appeared. It was all so wonderfully FUN. 

Then, my oncologist strongly recommended that I take a break from chemo, and I got scared. Quitting chemo felt like I wasn't doing everything possible for my health. In addition, chemo had become my crutch, and I was afraid to go without it. Fear can easily send me spinning in circles and blind me so that I don't see all my options. I was stuck in indecision and couldn't tell what I wanted, needed or felt right. 

I did know that I did not want to make a decision based solely on fear. I wanted to make a decision based on joy and hope and other good and positive feelings, but I couldn't find my way out of the fear.

The day after the conversation with my oncologist, I was still in this fearful place and NOTHING was clicking in my life. For example, I would search the web for specific information but couldn't find it at all. I would email someone and they would respond that they preferred that I call them - and not leave a number. It took Herculean effort respond to emails. Anything I tried hit a dead end and I felt very out-of-sync with my life and with the universe. On top of being fearful, I was now frustrated. 

"Be still and know that I am God."
Psalm 46:10

Easier said than done. I promised myself two weeks to make a decision and I felt the urgency of racing against a deadline. But I read and re-read and re-read this Psalm, which took root in my little exhausted heart. After a few deep breaths, I decided to hand it all over to God and be still inside, or, as still as I get.

Slowly, things shifted. For example:
- My friend, Kerry, suddenly and joyfully shared a series of synchronicities in her life, impacting mine in a positive way.  Even if I wasn't feeling the love right now, this let me know it was available. 
- I was told something directly by a few people I trust, including the father of a friend and a healer with whom I work, both of whom have walked this path before. They all shared that, if I am afraid of going off chemo, then by all means, go back on chemo, but there is something bigger to work on here. That resonated deep within me.

There were a number of other fantastical experiences, culminating in an amazing, awe-inspiring day where so many things came together that my head was spinning. The happenings of that day, taken together, were so big, in so many ways, that I have trouble writing about it. I just can't seem to capture it in words. I will try to give an overview and summarize its impact on me.

I intellectually and emotionally care about healing, and I know there is more that I can contribute and enjoy in this life. At the same time, I feel like I am drawn, or maybe even being sucked, down this other path that I cannot describe. It feels light and hopeful and open in a very expansive way. It feels grounded and beautiful and very connected to others and to God. Taking this path has become my immediate priority.

It is as if I peeked into this amazing world and can't help walking in further.

I don't know exactly what this path is, or where it will lead me.  I don't expect it to be easy, and I suspect there will be work to do. I do know that I need to go there. I can literally feel and sometimes see lots of light. Step by step, my decisions are different, my actions are different, and I feel like I am being led. Maybe you know this feeling already? I also know, as strongly as I know anything, that I cannot simultaneously take this path and do chemotherapy right now. 

So, I am indeed going to take the recommended break from chemotherapy. 

If this sounds insane to you, or unreal, I totally understand. But if you are interested, I would LOVE to have you along. Not only do I prefer to do things with friends, I also have a strong sense that, if you join, in any capacity, you will get something from this as well. 

Again, I don't know where this leads or what it involves. I will be feeling my way and trying to listen carefully to the messages and strong feelings that are coming my way. But I wanted to bring you up-to-date on the movement that happened since I last wrote. 

As you know, your prayers and positive thoughts have had a powerful impact on this journey and my life. My quality of life and my overall health is even better than it was four years ago when I was first diagnosed. I have experienced miracles in my life and witnessed miracles in others, in large part due to you and what we do together as a group. I appreciate all of what you do. Whether it feels big or small to you, taken together, it feels tremendous to me.

If you don't mind, please give thanks for that collective power and strength, and pray for a healthy body for me! Then live your life fully and with joy. I give thanks always for you. 

Have a fantastic weekend.

Love and blessings, 
Marie

Request for prayers

Hi everyone,

Chemo day tomorrow (Monday Nov 21). 

Last time around, your prayers, etc. totally changed my experience of chemo week. I am going to push my luck and ask you to do the same this time around.

So, even if as you read this, if you can offer up a quick prayer, positive thoughts, or whatever good vibes you can manage for a good chemo week, I would really appreciate it! Whatever you believe and can offer, I personally believe in the power of all of us together sending all this forth. I've seen and felt its power, and I may be getting greedy, but would love it all again!

THANK YOU so much!!!! And in case I don't get to write before Thursday, have an incredible and very blessed Thanksgiving day.

Love,
Marie

Joy is back!

I'm so excited to say that my joy is back!!!

First, thank you for entrusting your prayers to me. I am truly honored to be able to deliver them to Lourdes and to pray them with you. Before I deposited them in their spot, I prayed them. (If you gave me something on paper, I didn't open it but prayed for your prayers in general.) Afterwards, I said rosaries for them, and lit candles. I even did the first Station of the Cross on my knees for them. At this point, I started to feel like I was becoming an old Italian woman, which, all things considered, would not be a bad thing.

Seriously, though, doing that was such a gift to me, and I have confidence that your prayers are heard and will be answered.

The town of Lourdes is located in southwest France, in the Pyrenees mountains. The geography itself is beautiful, but for a city girl, there are no restaurants to write home about, and the hotels are basic.  Winding our way through the crowds, from our hotel to the Sanctuary, we passed shops bursting with candles, rosaries, statues, holy medals and other religious chachkas. Our ears were filled with religious music blaring from speakers.

Upon entering the Sanctuary, the noise of the shops faded, replaced with the melody of Ave Maria floating through the air, the cadence of prayers, the murmur of rosaries. Or sometimes, louder than a murmur. I loved listening to the Italians - it was like poetry to me:

Ave Maria, piena di grazia, 

il Signore è con te. 

You can envision the Sanctuary like a college campus, but replace the academic buildings with churches, cathedrals, crosses and Stations of the Cross. The grounds expand to provide a feeling of spaciousness, while at the same time, enveloping everyone in the warmth of over a century of prayers. Except for a small bookstore and donation boxes for candles or for bottles to hold water, there is no commerce. Very few people talk on cellphones or text as they walk around or sit and rest. 

Last year, when I went to Lourdes, I focused on myself and my own healing. This year, I had a strong feeling that I was to go but not for myself. Unsure what that exactly meant, I decided to focus on your prayers and direct all my own prayers and actions toward everyone but me.

You know what - that was harder than I thought! It is difficult to be in a place of healing, in a place where almost 70 healing miracles have been documented by non-Catholic doctors and scientists, and to NOT ask for healing on my own behalf! But it was a good learning, a good discipline and good practice. There is something to be said for focusing outside myself. And I have a new respect for nuns, who basically do this as a career.

Plus, there is so much inspiration there, in the lives of Mary, Jesus, and St. Bernadette. That helped.

When I left Boston for Lourdes, I was pretty down and had lost my will to live. This is not simply because chemo was so rough; it was as though a switch had flipped inside me somewhere, and it was too dark to find it again and switch it back.

During my time at Lourdes, there was no earthshattering event. Returning home, though, I felt that something significantly shifted inside myself during my time there, and I am grateful for that. It literally feels like I have been touched by the grace of God.

I mostly feel like myself again. I even feel like a calmer version of myself, which is so nice. 

Like anything that causes a shift inside you - traveling to a different culture, an encounter with a soulmate, meeting your new baby - words are inadequate to describe the feeling.

But I want to you know, I am in such a great place, I love that this is possible. For whatever you are handling that might bring you down in any way, even if you can't pull yourself up in the moment, even if you feel like you are supposed to be down in this moment, please know that you never know what tomorrow or even the next moment will bring. I'll admit, that could go either way, but at least hope is back.

While I was having my crappy chemo week, before I left for Lourdes, the nurse called and convinced me to meet with Palliative Care. This has been suggested, off and on, for the past year and a half. Palliative Care is when you are aiming for quality of life rather than for cure. For a long time, I thought it meant giving up. And, last week, when I agreed to meet with them, I had, indeed, given up.

After I returned from Lourdes, I decided to take my decisions one moment at a time, and trust that, rather than have a plan, I would be guided toward the right thing to do at the time. So, I went to my appointments, but wasn't sure if I would be doing chemo.

I walked in feeling stronger, in a very different way then ever before. Strong in my center, as though everything would be fine, and I wasn't in this alone.

When the Palliative Care doctors arrived, I assumed they would offer me more drugs: "Depressed? Try this anit-depressent.  Stomach hurts? Try more Zofran." Like that. I hate that approach and wasn't sure how I would react. I decided not to worry about it and wait and see.

AND, they weren't like that at all. They listened carefully to my story and heard who I am. The lead doctor said that she could offer a menu of drugs, but that clearly wasn't the answer for me. She suggested two places to start:

1. Learn to accept and maybe even embrace chemo, because my attitude toward it is not helping me.

2. Try to replicate whatever it was at Lourdes that has moved me to this place.

Both of these are difficult for me. The first one has been suggested by many friends, several times over. It is like telling your kids that broccoli is good. They have to come to that on their own. Not sure if I can do this yet!

The second one - well, think about when you return from an awesome trip, one that has changed you in ways you could not predict or even describe. How do you keep from slowly returning to who you were before you left? You can't replicate pieces of what did it - it is the whole package together, some parts of which you may not even be consciously aware.

I do know that I need to nurture and grow whatever seed was planted in me while I was in Lourdes, and hopefully it will spread whatever blessings I got while I was there. That is my job now. Thank you for helping me get to this. And I hope you can personally feel God's blessings in this very moment as well.

Love,

Marie

Continued Chemo Vacation!

My chemo vacation is extended! My PET CT came back clear and my CEA rose a tiny bit but remains in the normal range. This is the best news I could hope for. (Okay, I would hope for a stable CEA level but still, I'll take it.) 

I am grateful and humbled and exhaling again.

This time, the test itself went fine with no trauma, thanks to the happy surprise of having Jubilent Julie, my fave nurse, access my port prior to the test.

Two days after the test, the drive to the doctor's office to hear the results felt a bit like going before a parole board: Would I be granted freedom? I felt physically well, but I know from experience that that is no indication of what is really going on inside my body. 
When I got the news: happy happy joy joy -- I get another four weeks with no chemo, then a blood test. Assuming that is normal, another blood test the next month. Then, a PET CT three months from now.

Thank you for all your support in so many ways. Your friendship, your prayers, carrying the torch of hope when I couldn't, your forgiveness of my social lapses, your support of my wacky diet....it truly runs the gamut but is all so helpful to me and to my family.

It is hard to know exactly what is working. I continue my raw vegan diet. I'm doing herbs and tinctures, energy medicine, healing Masses, meditation, prayer, yoga, acupuncture, therapy....I'm sure there is more. I try to spend time with friends who are upbeat and have good energy. This is the best but also hardest to do, given all our busy lifestyles.

With the kids, we are feeling our way as we go, often reminded that our support systems are not necessarily theirs. For example, when we started down this path and A-man was four years old, he prayed regularly, sincerely and with an open heart for my recovery. When I had to go back on chemo last year, he decided that he didn't want to pray to a God who he felt wasn't listening. That led to lots of good discussions about God and Jesus, hopefully helping him to form his own beliefs. Recently, he told me that he is praying to Zeus and wants to go to a Greek church. I don't think those are connected, but, Greek friends: anyone want to take him there?

Last week, picking up A-man from school, he handed me a small piece of wood. On top of this wood balanced a large pile of sawdust. Obviously, he intended to carry this potential mess home. Even worse, he intended for me to carry this potential mess home. He was thrilled with his find so I swallowed my reservations and gingerly accepted the wood / sawdust combo.  As we walked, he chattered away in his typically happy mood, then suddenly informed me that I was carrying magical dust. He encouraged me to take a pinch (of the sawdust) and blow it away while making a wish. And, oh, if I didn't mind wishing for what he wanted, please wish that I get well. So I guess that, in addition to prayers, we have pixie dust.

Besides their coping mechanisms, we are noticing that each of us takes our time time to acclimate to the news that comes with each new report. Tiron and I will hear any news and let it settle for a bit, getting used to it. Sometimes, not always, we'll share the news with the boys. This time, when I told them about the good scan, their response was, "You had a good scan before. That doesn't mean anything." It didn't dampen my enthusiasm, but did show me that they need more definitive, day-to-day proof of wellness in their world. We would all like that, I guess.

So, whether you are sharing prayers or pixie dust, or something else, thank you for continuing it with us.  We all really rely on the sincere connection between us, and for that, too, I am grateful.

Love and blessings to you,
Marie