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.

Gifts of Spirit

On a recent Sunday, I was moved by this reading:

1 COR 12:4-11

Brothers and sisters:

There are different kinds of spiritual gifts but the same Spirit;
there are different forms of service but the same Lord;
there are different workings but the same God
who produces all of them in everyone.

To each individual the manifestation of the Spirit
is given for some benefit.

To one is given through the Spirit the expression of wisdom;
to another, the expression of knowledge according to the same Spirit;
to another, faith by the same Spirit;
to another, gifts of healing by the one Spirit;
to another, mighty deeds;
to another, prophecy;
to another, discernment of spirits;
to another, varieties of tongues;
to another, interpretation of tongues.

But one and the same Spirit produces all of these,
distributing them individually to each person as he wishes.

When I learned that I needed to do chemotherapy, people who have traveled this road told me that I would need help. What kind of help? No one could say.

So in my fantasy world, I imagined teachers who were super compassionate with our children, or specific friends who would step in to provide logistical or emotional support.

Like most (if not all) of my fantasies, it bore no relation to reality. Teachers did their best but were not compassionate in the super-human way that I envisioned. The friends who I thought would be my rock either disappeared or needed more support than I did. Sometimes I felt disappointed or let down that people were not acting according to my expectations.

Fortunately, I was so ripped apart that I could not possibly direct anything in my life toward the way I thought it “should be.” As a result, I was wide open to anything. And people, amazingly, stepped into those openings in our lives in ways I would never have envisioned or directed on my own.

Friends, who I never knew could cook, crafted amazing meals and drove (sometimes long distances) to deliver them. Others, who lead completely booked lives, offered to drive me to appointments or chauffeur my children hither and yon. Old friends call, text, email or show up at the just the right time, and continue to include us in social invitations. Although I felt like a lost cause and not worthy of new friendships, some of my most treasured friends today are the ones who stepped into our lives after my diagnosis, who even visit me at home, encourage me to try new things, and lift me with their energy. The fact that they befriended someone who thought she was on her way out the door of this life constantly reminds me that life starts new every single minute.

People have done things for us that I never imagined we would need or want, but have made our lives infinitely better and our foundation more stable. They helped us to grow.

So when I read this part of Corinthians, all those people flooded into my heart. At some point long ago, I would have assumed that one action would be more helpful or important than another. But as time progressed, each action of our friends and family felt like the perfect workings of God through that individual. Gifts all, given and openly shared. Each unique, and each filled with Spirit.

With gratitude and love,
Marie

 

 

 

Talk Dirty with Me

Last week, my life was, at its heart, a shitshow. At times, literally.

This is likely to be a relatively graphic post. If you might be squeamish or uncomfortable, especially about bodily output, feel free to exit now. However, if you decide to come along for the ride, please know that, in rectal cancer, sometimes things get yucky.

Let’s go back to Tuesday of last week, when I went to Dana Farber for chemo.

Lisa drove me there, and I told her that she could just drop me off, but I am so grateful that she stayed. I don’t know how I would have made it through that appointment by myself.

When I met with my doctor, we chatted about my past week: The open bellybutton wound, the various pain sites, the horrible intestinal blockage from the previous Friday, my trials with trying to get advice from them over the phone and, oh, by the way, I’ve several days of constipation.

He looked worried at that last one and told me they would have to do an x-ray before deciding on chemo.

Before deciding on chemo????

Well, he said, the constipation could be due to a tumor blocking the colon. If that were the case, no chemo today and surgery ASAP to remove that part of the intestine and move my colostomy bag to another place.

I’ve been through that surgery twice before, and, while it is not fun, I know that I can do it. Still, I focused on no blockage.

I thought he was done but no. He wanted to show me what was behind Door #2.

Another possibility: Tumor is weighing on my colon, making it difficult for the colon to move and process nutrition. If my colon cannot move, I would need a permanent G-tube and 24/7 IV nutrition. Would I work with the surgeon I love (who is at a different hospital) or should he find one here for me?

Select a surgeon? I was still stuck on “permanent G-tube and 24/7 IV nutrition.” I don’t like to leap ahead at possibilities, but his talk of picking a surgeon left me spinning and stunned and wondering if I would ever be able to eat solid foods again. I tried to focus on the present moment, that maybe instead I could have “what was behind the curtain” or even run off the stage and choose none of the above.

Instead, Lisa and I (in my zombie state) left his office and took an elevator, the bridge, and another elevator to get to X-ray.

Lisa insisted that we pray (thanks!), then I did the X-ray and returned to the doctor while Lisa waited for a copy of the disk (that I could bring home for my husband to scrutinize if needed).

On my way back to the doctor’s office, I stopped behind one bank of elevators, sat on the floor, and cried.

While there, my phone dinged with three texts. The first was from a woman I know, not in person, but through this blog. Her mother read my blog but has since passed away. The daughter and I became friends and stay in touch as we can, though not with regularity. Her words in this unexpected text reached my heart, as though she and her mother were saying it would, somehow, be okay. Another text arrived from a friend simply checking in. And the third text, from a friend who is an energy healer, asked if I might need some help.

So I took a deep breath, soaked in the love, and ventured on to see my doctor.

The good news is that, while I am officially full of crap, nothing obvious is slowing down the works and I was able to get chemo last week. (Don’t you love it when chemo is the best case scenario?)

In the days that followed, I continued my chemo and recovery at home, in bed, really sad. I never before had considered the thought of a feeding tube; I don’t know what I would choose to do.

Then one morning, as I lay in bed looking at all the green, leafy trees outside my bedroom window, I noticed one dead branch hanging in front of them.

Often, when I need perspective and strength, I think of my grandfather (who loved good, fresh food) and hoped he was with me now. It felt like a fantasy, and I don’t like to make deals with the spirits, but I suddenly said to him, “It sure would be nice to see a cardinal on this branch to say that you are with me.”

I kid you not, a cardinal almost immediately landed and stayed for maybe a minute before it flew out of sight.

I know that I dodged a bullet last week, and for that, I am grateful. But as I continue to work through the slow colon issues, I can’t help feeling that Door #2 could be looming. Wish me luck. And thank God and the universe that you can eat and poop!

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

Forgiveness

Thank you for all your good feelings and good wishes last week. It helped so much. By Monday afternoon, I was on my way to feeling much better.

I was also on my way to see John of God, who was scheduled to be at the Omega Institute in Rhinebeck, NY. I recovered enough to drive there and, honestly, I believe I was carried there safely by spiritual entities. I am so grateful that I made it, especially because I knew that was where I needed to be at that time.

In the past, each time I saw John of God in Brazil, I experienced lots of fun coincidences. More than that, I walked away changed to my core and receiving at least one big message. I wasn’t sure what to expect from Omega.

The fun coincidences showed up. For example, my friend Kate told me to look for her friend Gillian. In a sea of 1600 people, all of whom were wearing white and doing introspective soul work, what are the odds? But the next day, standing in line, I turned to the woman behind me and said, “You wouldn’t happen to be Kate’s friend, Gillian?” Bingo!

Happily, I can say that I do feel changed as a result of this experience. In fact, I feel wonderful in so many ways. The simplest way to describe it is to say that I feel great peace and health.

Finally, I received a message this time as well: Forgiveness. This word came from many directions and in many forms. The topic came up in random conversations with strangers. People would spontaneously begin discussing ho`oponopono (a Hawaiian forgiveness prayer) with me. I heard that voice in my head that told me that now is time for forgiveness. When we said the Lord’s Prayer, the words “as we forgive those who trespass against us” sounded louder than the rest.

I don’t feel like I harbor any grudges or walk around bearing ill will. I assumed this meant day-to-day forgiveness, like toward people who are inadvertently rude to me or annoying. I got excited – I was up for that! I could be a light of forgiveness, with bad things just bouncing off and away. This would be awesome!

Then I randomly met Donna at lunch. We soon discovered that we not only had mutual interests but a mutual friend. Later, I ran into her again, and she made a comment that went straight to my core and illuminated grudges that I harbor that are so old and so much a part of me that I don’t even realize I am carrying them. These are the kind of grudges that drive my daily behavior, that define who I am. Dropping these grudges would be like cutting out a part of me.

Forgiveness suddenly did not feel so easy or fun.

I know that when I get these messages, I need to listen and act. Not knowing where to start, I began with trust. I asked for help and promised to do the work that is in front of me, even if only one step at a time. Here goes.

With love, gratitude, and, hopefully, the beginning of humble forgiveness,
Marie

 

Not my first choice

With a stage 4 cancer diagnosis, you get access to lots of services, especially if you have children. Everything from stuffed animals to a backpack of entertaining and educational materials to trips to making a video. I try to accept none of those. I can barely accept that I have a cancer diagnosis.

However, at one point, all events pointed to me doing a video with my family. I’m not generally an anxious person, but this activity leaves me fraught with anxiety.

What would we talk about? Will I cry in a way that renders it unusable? If I don’t cry, will I hold back so much that I risk being inauthentic? Will I get to say what needs to be said? What will I wear?

Even more, I worry about how the kids will handle it. They already carry an underlying worry about me, and they ask questions like, “When will Mommy die?” or “Do you have the energy to hug me?” Will this be horrible for them? How will I explain it to them?

Lately, to relax, I spend late nights watching comedy routines online. Jimmy Fallon is a current favorite, and Louis CK is a go-to as well. He can be a little off-color and not politically correct, but his humor does get me to see my life differently and more easily face some hard truths about myself.

Plus he makes me laugh.

Recently, I was struck by a part of his routine that goes something like this:

“We get completely annoyed when we don’t get exactly what we want. You are at a red light” (I am picturing a street in Manhattan) “and you see the guy in the far right lane, four lanes over from the left lane. And he wants to make a left turn. At that street. So he cuts to the left, in front of the three lanes of traffic, effectively blocking them until he can make his left turn.

“The whole time, he is giving this apologetic face, like, ‘Sorry, but this is my left. I need to turn left here.’

“Why can’t he just drive two blocks ahead and turn left there? It might not be ideal, it might not be his first choice, but it will get him there.

“ ‘But this is the way I like to go!’ he might respond. ‘The other way is just so inconvenient for me. And this is the way I always go.’”

Another story: Like many people, I have my favorite priest for Mass. And when I get there and notice that he isn’t, I brace myself for a less-than-familiar experience.

But at this Mass, when the unfamiliar priest spoke, I heard a familiar, Midwestern accent. And his way of speaking reminded me how much I love the inclusive nature of my experience of Midwesterners. I instantly transported to my happy place, despite not getting my first choice.

Dealing with this cancer diagnosis, in just about every way, is not my first choice. Like the driver, I tried to force my way down a life road that was more familiar but I couldn’t easily or directly reach, but I feel like I am finding another way to get there.

And like getting the guest priest at Mass, this route seems to be okay. When I stop and look around, at least today, this moment, I am feeling good. I can breathe and walk and think and laugh. And I can love.

And maybe, just maybe, despite being far from my first choice, this video on Saturday will work out alright after all.

The greatest of these….

We live in the Boston area, so when I considered hospitals for chemotherapy, I looked at Dana Farber. At the time, everyone was squeezed into Dana Farber’s old building. Though the staff was unbelievable kind, patients were crowded into small waiting rooms.

I saw many tired faces. I noticed people with walkers and in wheelchairs. I saw people who clearly depended on others. I didn’t notice much conversation and people seemed to be each in their own world, reading a magazine or zoning out.

Scanning the faces, I worried that that would be me. Would I become resigned? Tired? Yellow? Would I become dependent? Would I have anything to offer the world?

Soon I was called for my appointment and my husband, our friend and I met with the oncologist, then left the building. As we waited for our car, I saw an older woman on oxygen, slumped in a wheelchair while she waited for her ride to pick her up.

That was the final straw. I freaked out and decided to get my treatment at a more general hospital, where I could feel like one of many kinds of patients.

Eventually, for my own reasons, I switched my treatment to Dana Farber. Since my first visit, they built a second building, so it is less crowded (though it is getting more and more crowded and harder to find a seat).

This time around, I still see many tired faces, but I feel more compassion and I notice the patients who are upbeat. Those in walkers and in wheelchairs make their way and even make the effort to consider the needs of others. One woman actually moved from her much-needed wheelchair to a chair because the wheelchair was blocking in the aisle and she wanted to accommodate others.

I am generally less wrapped up in my own fear and panic so notice more of the conversation among folks. I hear the husband remind his wife about the lovely things she told their children that morning, his tone reassuring her that she is showing them her love. I hear the couples who nervously bicker while waiting for an appointment and can feel the long-time affection in their voices. I can feel the love from the son who is ferrying his mother and holding her hand.

It continues to be difficult for me to see the patients on oxygen and in wheelchairs, but now they look more like people to me and a little less like my fear of the future.

No matter how ill they are, I assumed that each of these people must be offering something, because their companions clearly didn’t want to let go of the person they love.

I am honored to bear witness to all this. And recently I noticed that, when everything else is stripped away – our potential to be useful; our ego and the façade we create for the world; our quick minds; our ability to have a coherent conversation; our memories; our personal fashion sense; our ability to walk, stand, and breathe unaided – when these and even hope are stripped away, what remains, and comes through loud and clear, is love.