And things feel better!

As you know, I have recently felt disconnected from God and all the magical stuff that I love. But now, I need to tell you about this past week…

I was supposed to go see John of God at Omega in Rhinebeck, NY. I have been seeing him, either in Brazil or North America, for a number of years, as I find it worthwhile on many levels. But this year, I had to cancel due to my procedure.

They say that the entities who work with John of God begin to work on you when you set your intention and book the trip. Some years, that has been obvious. Other years, more subtle (as in, I can’t tell at all).

This year, I saw nothing. But then, I was in my grumpy mood and wasn’t about to see anything, I guess.

Now that I am at the end of the week, I will share a couple of stories with you that I found fascinating.

“Random” meeting

Nancy and I planned to go to Omega together, but she was there by herself (among 2,000 other people) this year.

At lunchtime, all 2,000 people converge on this tiny lunchroom, and you find a seat anywhere you can. Sarah scanned the room and there were few, if any, open seats, but she found one next to Nancy.

They chatted over lunch for about 45 minutes and, when they got up to leave, Nancy mentioned that she was supposed to travel here with her friend, Marie….

Sarah said something like, “This can’t be the same Marie!”

What a “random” meeting! I loved that!

Divine guidance

As you might remember, my surgery went better than anyone expected. The nephrostomy went smoothly. And, despite the fact that the doctor said that he NEVER places a stent in that same first surgery, he placed the stent. “It was just clear,” he told my husband. Yay!!! Really glad that he had some divine guidance and followed it!

Lovely surgeon

You might also remember that I wasn’t crazy about my surgeon, but my urologist calmed me down.

When they were prepping me, a young, very nice doctor came to see me. I asked if he would be doing the surgery. “No, I’m the resident. I’ll be in the room observing. Dr. XxXx will do the surgery.”

That was an unfamiliar name and I wasn’t sure if I was crazy about the switch.

“Who is Dr. XxXx?” I asked.

“The Fellow,” he replied. “Dr. XYXY is attending.”

Then he said goodbye, see you in surgery, whatever.

I looked at my husband-the-doctor.

“You are at a teaching hospital. The room will be filled with all kinds of doctors learning.”

“I know. This is what I signed up for. Still…”

And they wheeled me in.

Just before I went under, this amazing woman appeared by my side. She seemed kind and competent.

“Hi, I’m Dr. XxXx.”

YES!

And finally, on a personal note…

Without going into too much detail, there is something that one of our boys has wanted in his life for a long time. We couldn’t see a way to make that happen – there were lots of obstacles, the logistics seemed to be crazy, it just wasn’t going to happen.

And then, within a very short period of time, circumstances changed to allow what he wanted to become reality. We are still working on it, but the path feels clear and joyful, and I’m so excited for him. I’m looking forward to this more than anything else right now, even more than a vacation.

Right now…

Sitting in so much gratitude and wonder, and soaking it all in. Thanks for taking this path with me, and hoping you are feeling the light. Thank you for all the support you gave as I walked through a darker place, and for all your prayers and positive thoughts when I could generate none of that. You helped all of this come about, and helped to move me to a better place.

Chemo tomorrow (Tuesday) morning…

Love and blessings,
Marie

Hab 1:2-3; 2:2-4

How long, O LORD? I cry for help
but you do not listen!

I cry out to you, “Violence!”
but you do not intervene.

Why do you let me see ruin;
why must I look at misery?

Destruction and violence are before me;
there is strife, and clamorous discord.

Then the LORD answered me and said:

Write down the vision clearly upon the tablets,
so that one can read it readily.

For the vision still has its time,
presses on to fulfillment, and will not disappoint;

if it delays, wait for it,
it will surely come, it will not be late.

The rash one has no integrity;
but the just one, because of his faith, shall live.

The reverberation of my time with John of God

Thank you for all your prayers and support. I am fully convinced that there are greater powers at work, and I appreciate that you tap into that to help me. Thank you.

I took last week off chemo to go see John of God at Omega in Rhinebeck, NY. Because I took a week off early in September, I was a little nervous about taking this week off as well. But I also know that when I see John of God and the entities who work with him, I experience positive and unexpected changes.

So off I went.

I arrived at Omega with specific intentions in mind so that I could be clear during the many hours of meditation and prayer.

Rather than describe the experience, I’ll share some of the outcomes.

But first, I will share a little background. The first time I went to see John of God (in Brazil), my primary intention was to be healed of tumors. (My summary of that trip is here. If you want to read more about it, I have more details starting on July 30 in that same blog.)  When I returned home, friends asked if I was upset that I wasn’t “healed.” But I felt great. Compared to a few weeks before, I was softer, happier, less judgmental. I felt like layers of yucky feelings had been removed from me. Maybe I still had the tumors, but I also had my life back. That was worth even more.

Because of that experience, I bring my own intentions but trust that the best things will happen.

And yes, one of my intentions was to remove the tumors, and specifically, the tumor in my belly button.

Here is what I experienced:

• On Tuesday afternoon, I had the start of a bowel obstruction. I could barely move. By now, I know the gig for these: I’m up all night, in pain and vomiting, until everything frees itself. But this time, I lay in bed (still feeling intense waves of pain) and FELL ASLEEP. That has NEVER happened before. When I woke in the morning, the pain was gone and the obstruction was freed. Immense gratitude!
• On Wednesday, I felt the belly button tumor. Doing that gives me the heebie-jeebies, but I need to know if there is any change. It wasn’t there. In place of that small, hard ball was soft mushy skin. Hmm. I checked again on Thursday. And Friday, and Saturday. I’m still not sure what to make of that.
• The opening in my belly button is barely noticeable.
• When I skip a week of chemo, I am usually in more pain that second week and my energy level is low. But right now, I’m actually in less pain that I have been in years. I can lift grocery bags and move the dryer. I had the energy to attend a religious service, go to the grocery store, and cook two full meals, all in a good mood!

Plus, one more fun event that happened after I arrived home, totally unrelated to health.

I bought these Birkenstocks, wore them once, and left them in the car.

Birkenstocks

Recently, I noticed there was only one on the floor of my car. I looked through the car and the house. I asked my husband and kids. No sign of it anywhere. I hate losing things, especially brand new things.

The shoe was missing long enough that I considered throwing away its mate, but I didn’t.

On Saturday, I drove one of our sons to his friend’s house. My husband usually does this, but I was feeling great and wanted to go. I had never been to the house and was driving slowly to find it when our son said, “His house is right there, the one with the fence that has your shoe on it.”

He was very matter-of-fact, like this happens every day. Ha ha, I thought, funny.

When we walked to the house, I examined the shoe. It was the same style and color, the right size, and even the right foot. Hmm, maybe I’ll keep it, I thought. I can use it. It was even brand new. It felt just like mine.

Once in the house, I asked my friend about the shoe. She had found it on the sidewalk in front of her house. They considered throwing it away, but it was brand new, so thought they would put it on the fence. Maybe whoever lost it would come looking for it. It had been on that fence long enough that they again considered throwing it away. But they didn’t.

I was just thrilled.

But I had never been to the house. How did it get there? We figured that my husband drove my car there, and it somehow fell onto the sideway. Possible.

I’m just giddy that all the pieces fell into place and I have my pair of shoes together again! (Now I just need the warm weather to return.)

On another note (literally), I attended a beautiful Humanistic Judaism service at Kahal B’raira. I wanted to share this song with you, especially the words in bold, because I so appreciate the way you share the source of strength deep within you.

Song: Makom hako’ach

            Makom hako’ach b’tocheinu,
            M’korot ha-b’racha m’chevroteinu.

           May the source of strength
           That dwells so deep within us,
           Help us find the courage to make our lives a blessing,
           And let us say: shalom.

            Makom hako’ah b’tocheinu,
            M’korot ha-b’rakha m’chevroteinu.

           Bless those in need of healing with refuah sh’leima
           The renewal of body, the renewal of spirit,
           And let us say: shalom.

– Debbie Friedman
Adapted by J. Falick, M. Jerris , and A. Chalom

Blessings and love,
Marie

Inspiration and support

Health Story Collaborative hosts cool events where patients of all kinds get to tell their stories. I spoke at one event, and afterward, I walked on air and could feel a change in the vibration of my body.

Following my magnificent experience, I was honored to host one of these discussions in my home for a woman named Liz who was diagnosed with ovarian cancer. I didn’t know Liz – she was recommended by Health Story Collaborative – but she and her friends had wonderful energy and sharing her story in that way was as powerful for her as mine was for me.

Though Liz and I had much in common (similar in age, children of the same age, attitudes toward life, cancer diagnosis….), we didn’t stay in touch. Life gets busy, we all have our routines, you have to prioritize your limited energy during treatments, and we each have plenty of friends we already don’t get to see as often as we would like.

This week, I actively wondered about Liz and how she was doing. I didn’t even remember her last name to try and find her email address in my list of contacts, and contacting Health Story Collaborative to find her felt like adding another thing on my list of things to do, so I didn’t follow through. Liz’s well-being remained an unanswered question.

In the meantime, here is how my chemo holiday has progressing.

First and foremost – I love not doing chemo! I love being free from tubes, I love not carrying vomit bags with me everywhere, and I love having a clearer mind. I love having more than two weeks each month when I can do things that one needs and wants to do in life (grocery shop, hair and dentist appointments, kids’ school events, etc.).

Occasionally, I think about my CT scan results. The doctors saw some fluid near the anastomosis (surgical connection of two parts of my intestines that aren’t normally connected). The fluid can be simply nothing or it could mean that the Avastin (which has been working so well for me) may be doing damage to the stitching there. If there is damage, it is inoperable, and a tear in that area would likely be fatal. And not instantly fatal – it would more likely involve a long hospital stay and decline. For the record, that is not my preferred way to die. So if that were the case, that would mean no more Avastin.

I generally don’t look ahead; I mostly assume we will handle whatever comes up when it arises. But when I think about this particular potential conversation with my doctor, I do remind myself that if Avastin is no longer an option, I am lucky to have other options when it comes to chemo drugs. There is another drug, Erbitux, that many friends have taken and one friend is currently taking with successful results. The most notable side effect is a major skin reaction. It looks like you have acne or a red rash all over your body, which is usually uncomfortable. Given how sensitive my skin is on a good day (for example, I have to watch what kind of Band-Aid I use, or which tape they use on my skin at the hospital), I fear that my skin will be especially sensitive to this drug. Besides that, it is unsightly. I kind of like not “looking” like a cancer patient.

Mostly, I try to stay focused on the present. Admittedly, that is easier to do when I am feeling well. The snow is gone and while it has been chilly, the sun is starting to shine, so that helps.

However, I’ve also had many days filled with pain that make it hard to move or even stand, and nights where the pain keeps me from sleeping. Strung back-to-back for over a week, these days feel endless and discouraging.

I realized that I rely on living my life from miracle to miracle and I wasn’t noticing anything miraculous popping up, so that was bringing me down as well.

During that time, I did what I could. I booked more acupuncture. Tom Tam loaned me this device to wear to help with my pain. (I was skeptical, but it truly helped enough to get me up and moving.) I scheduled regular bodywork appointments with a local guru. I resumed calls with my energy worker. I did a reiki session that enabled me to sleep. I read funny novels and watched comedy clips on YouTube. I reframed any negative thoughts that made their way into my psyche.

Absentmindedly deleting junk emails this week, I noticed one about a new drug approved by the FDA, ramucirumab (brand name Cyramza®)  targeted for stage 4 cancer patients. It works similarly to Erbitux but with different side effects. Ah, a potential option if I need it. Thank you God. I felt myself exhale.

Then, I went into Dana-Farber for a port flush. (They need to periodically access the port in my chest and flush it with saline to keep it clear and useful.)

I signed in and the woman behind the counter gave me the plastic bracelet with my name, birthdate, and medical ID number. I hate that bracelet and all that it stands for. The port flush went well and, immediately afterwards, I walked through the waiting room, straight to the trash can, and pulled the plastic bracelet off my wrist.

As I held it over the trash can, a woman stopped and said to me, “You might not….”

Immediately defensive thoughts went flying through my mind, such as, Don’t tell me that I might not want to throw this away. Don’t tell me that I might need this for discounted parking. I just want to be rid of this thing…

Thankfully, she couldn’t hear my thoughts, so she continued on, uninterrupted (as far as she knew), “…remember me. I did a talk at your house….”

OH MY GOSH. It was LIZ! I just LOVE it when questions are answered. I didn’t know where to start reconnecting with her – there were so many places to begin!

Well, we were both alive, which seems to be everyone’s first question about cancer patients. She looked good and energetic and still had the cynical edge that made me laugh.

She was back on chemo and today was a treatment day. We talked about parenting through treatments and taking care of ourselves and living with one foot on the path of “I will heal” and the other on the path of “What if I don’t.” We talked about Kripalu. We talked about Tong Ren and Tom Tam and, in that crowded waiting room, I lifted my shirt to show her the device he developed that helps me with pain. (You should know that lifting my shirt also exposes my colostomy bag, but that paled against my excitement of seeing her and sharing something that might help. Besides, in that room, people are dealing with issues larger than the horror of glimpsing someone else’s colostomy bag.)

Running into Liz at that place and time was like a Divine Intervention. She told me that she really needed to see me at that moment, and I couldn’t explain how lifted I was to see her. It helped to restore my faith in the connectedness and purpose of the universe. Her presence helped me to feel like God was listening to my questions and would provide the answers if I can just be patient.

We exchanged email addresses again and while I am not sure how we will stay in touch, I know that our hearts are connected enough to bring us together and inspire each other as  we move forward.

Thank you for always being there to inspire and support me. I appreciate your prayers as much if not even more during this break, as it can be scary and painful but also, bearable, with your friendship and support.

Blessings and love and miracles,
Marie

Anything is possible!

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

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

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

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

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

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

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

Love,
Marie

Miracles so far this week

So far, the chemo break is fabulous, though it presents dilemmas of a different sort.

But that is a topic for another time. For today, I will share some of the happy miracles of the week so far.

On Monday, I decided that I wanted to make steamed dumplings. I had a small bit of chicken and I actually had the rice wrappers in my freezer. I could add peas (also in my freezer) and scallions. I’ve never made them before but how hard could it be?

I thawed the rice wrappers and chopped the scallions. I set everything up like an assembly line and started to improvise.

On Monday nights, Puspa helps us out. Puspa just started college. She has lived in the United States for the past five years or so, but was born and raised – until 5 years ago – in Nepal. She noticed my inept beginnings, as I tried to construct and wrap one dumpling, and kindly asked if she could help.

I watched her demonstration in awe as she folded the sides on one half of the dumpling wrapper, knew exactly how much stuffing it would hold and sealed it closed. She even wrapped the ends around to make a beautiful, bite-sized morsel.

As I gushed about her skill, she laughingly said, “I’ve made hundreds of these.” I pictured a kitchen filled with generations of women chatting and making a meal together, the older female relatives doing the more complicated parts of the meal while the younger girls sat doing the repetitive dumpling-making. Kind of how I learned to make gnocchi.

Miracle #1: My urge to make Asian dumplings on a day when there was actually an in-house Asian dumpling expert!

Miracle #2

I woke early on a beautiful Wednesday morning, thinking that I would like to meditate outside but didn’t want to do my same old thing. So I went back to sleep.

When I woke again, I felt a strong urge to look at the cover of a book called The Way of Boys. I knew the author is Anthony Rao but suddenly noticed the name of the co-author, Michelle Seaton.

Later that day, a friend wrote to me about a type of meditation that is lovely to do outside. Did I want to learn about it?

AND, she told me a bit about Michelle Seaton’s latest project. “Had I heard of her?”

So cool!

Miracle #3

For the past couple of years, my friend Lisa has been recommending that I see this particular bodywork person. “I can’t explain what he does. He is just gifted.”

I put off calling.

More recently, I was having tea with Natasha, who recommended that same bodywork person. “I can’t explain what he does. He is just gifted.”

THEN he walked into the cafe, so Natasha introduced us and told him that I needed to see him.

“Email me directly,” he offered. “I will squeeze you in.”

Apparently, this is rare. But did I take him up on it? No, I did not.

This week, on Wednesday, Natasha called. She couldn’t use her appointment and would I be able to take it? This time, I had to step up. Yes.

I can’t explain what he does. He is just gifted. I was transported. I learned a lot about the impact on my body of all this inactivity. And I am so grateful for Natasha and Lisa pointing me in this direction and to God and Natasha for putting that opportunity right in my face.

Miracle #4

As I prayed for the health of the many people I know who are dealing with cancer and other challenges, I realized that three of those for whom I pray by name got good news this week. I gave enormous thanks for answered prayers and, of course, asked for more, confident that that well has no bottom.

Thank you, too, for being here, through everything. I pray that you are happy with the miracles that are unfolding in your life every day, and that you feel the love, blessings and prayers always.

Marie

The Lady on the Bus

Chemo resumes today. If you are inspired to send any prayers or positive thoughts, please do. No pressure, but they make a world of difference and I am deeply grateful.

It was wonderful to be off chemo last week. Tiron and I got to travel to Arizona with the boys. Not only did we enjoy our escape from the blizzards in Boston and our stay at a resort in warm weather, we attended a wonderful and generous three-day series of parties hosted by friends to celebrate their birthdays and filled with the love of so many family and friends.

Occasionally during the festivities, I wondered whether I could ever believe that I would be well. I know that this belief is important, but I don’t know how to “make” myself feel that belief in a genuine way. I prayed for some way, some insight, something.

On our final morning at the resort restaurant, I bumped into Eric. Eric and I met this weekend for the first time. We barely spoke because there were just so many old friends to catch up with and new friends to get to know, but Eric clearly exuded positive energy and optimism and seemed to be easy to talk with and comfortable to be around.

That last morning, standing at the breakfast buffet, we shared small talk, then he told me that his best friend was diagnosed with pancreatic cancer. I started to feel my internal defenses rise against another story of loss but something made me trust him so I listened as he continued.

Eric received the news on his voicemail. Before he could return the call, he sat on a bus next to a lady who, unprompted, told him how she was once diagnosed with a specific type of pancreatic cancer (which he relayed but I don’t recall) and recovered.

At this point, he knew that his friend would be well, and, soon after that, he was able to call his friend and speak to him speak from a different place, from hope and optimism and an inner knowing that things could and would get better.

They later learned that his friend indeed had the same cancer as that woman, and though the road wasn’t easy, he recovered and is healthy and cancer-free today.

Eric talked a bit longer with me about my diagnosis. He shared his contagious optimism about my improving health, admitting that it doesn’t mean that the path ahead will be straightforward or easy, but again saying I am moving toward health and I can heal from this. He used the word “believe.”

I felt like Eric was my lady on the bus. Something inside of me shifted to believe that good health is not only possible, but possible for me.

Thank you for sharing your positive energy, your connections, your friendship and the friendships of others. Thank you for your prayers on my behalf, and for keeping me company on this amazing and sometimes crazy ride.

Love,

Marie

04 It’s Going To Be Alright [Album Version]