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.

All is good!

I’ll admit that it is way easier to celebrate God when things go well.

I’m totally celebrating! I am thanking God and all of you for all your prayers and help in making the surgery even more successful than ANYONE expected.

The plan was to place a nephrostomy for at least two weeks, to make sure there is no infection, to deflate the kidney and make it easier to place the stent, etc. And the doctor told me, he never places stents in the first surgery because he always has to go back and fix it.

So I was prepared (as much as I guess I could be – was still freaking out) to have the nephrostomy and a constant companion bag.

BUT they not only placed the tube but they also PLACED THE STENT!! We were thrilled.

The show isn’t done: This is sort of a “starter stent” and I have to have the “big girl stent” placed another day. And I still have a tube hanging out of my back, along with a huge bandage (and still no showers allowed). Awkward.

But, really, NO BAG for the expected 2-4 weeks! I had it for about 36 hours, more than enough for me, as I’m running out of places to hide bags under my clothing. Woo hoo. Hopefully soon, I can have the tube removed and shower again. But in the meantime, I am THRILLED about the forward progress!

I know for sure that your prayers and support made the difference. So much energy going that way. Thank you. When I was under conscious sedation, I could feel it. I believe that faith can move mountains. What a difference! Thank you.

If you want a story from the day, here is one. Otherwise, thank you for reading this far and for all you have done with your connection to God and the great energy grid! Sending love love love! And, now, this story:

I arrived pretty nervous, but EVERYONE I encountered was not only pleasant but also uplifting. After I signed in, the receptionist sent my husband to the cushy breakfast area while a volunteer took me and another woman (older than I am) to get prepped.

It was a little bit of a walk, including an elevator ride, so the volunteer made small talk and I let the other woman carry the other side of the conversation. I really wasn’t into it.

When we reached the prep area, the volunteer left and the other woman and I sat in adjacent chairs, waiting to be called.

Already in chatty mode and actually quite friendly, the woman asked me, “Is this your first port?”, leading me to I assume she was there to have a port placed.

“Oh, I’m not here for a port,” I told her. “But I do have one.” And I showed it to her.

“They ran out of veins,” she sighed.

“Oh, the port is MUCH easier. Much. To be honest, it took a couple of months to get used to it.” Her eyes got wide, so I quickly added, “But now I barely think about it.”

Like me, she had a right-side mastectomy, so I told her they would likely place the port above her left breast. “I do notice it when I drive, when the seat belt hits it a certain way. Otherwise, I really don’t think about it.”

They called my name and I told her that she was going to be great. We never shared the type of cancer we were dealing with, or why I was there, but that is okay. Allowing myself to make a connection helped me to relax and regain confidence, and I hope that her procedure went just as well as mine did.

Thanks to God and to you!

Love and blessings,
Marie

 

 

Procedure on Tuesday morning

Thanks again for all your support, in so many ways. This whole ride has been crazy lately, between the medical issues and making sure the kids have a good start to school, we really appreciate all the support in whatever form it takes.

So, to ask for MORE…

I have a “procedure” on Tuesday morning to get a nephrostomy. Please send prayers and positive thoughts that this goes smoothly and successfully AND that I am not super depressed afterwards! As much as I want to believe and trust that this will be in for only two weeks, the interventional radiologist firmly planted in my psyche the thought that this might be permanent. That thought creeps out from the dark recesses of my mind at the most inopportune times.

Regardless, we can only move forward. It is sort of surreal to go about daily life knowing that on Tuesday, I have little clue how my life will change. I know that on Wednesday, Thursday and Friday, I will have a visiting nurse to help me with all this. That alone makes me feel like there will be an adjustment. I talked with another nurse on Friday – he was super nice but when I asked how to live with this on a daily basis – how to sleep and drive and keep myself clean – he actually said that I will have to “MacGyver my way through this.” I have never been good at MacGyvering anything. Besides, it is crazy, to me, that they have done so many of these yet cannot tell you how to live with it.

Looking beyond this makes me crazy too. I have something every week for the next 2+ months:

• Procedure (to place nephrostomy)
• Chemo
• Procedure (to put in the stent)
• Chemo
• CT scan
• Chemo
• Procedure (in case first time the stent doesn’t work)
• Chemo
• Procedure (to remove nephrostomy tube)
• Chemo

I cannot process all that, so I am focused on today. I have been doing what I can with the boys, attended a class dinner with my husband, visited with friends, took care of one child who wasn’t feeling well enough to attend school.

In the spirit of making the best of things, I woke up Saturday morning and thought, instead of looking at this as “no more showers for awhile”* I should look at it as “I really appreciate the next four days of showers.”

So I got out of bed, turned on the shower, and….lukewarm water. I knew that meant there wasn’t much left so I took a quick and not fully satisfying shower, then learned our heating system was broken. Ironic. (Thanks to my husband, it got fixed that very day.)

Right now, I am feeling good and back to being grateful for my life, even with all my external parts, and being nervous about things like the Presidential debates and the upcoming election.

Thank you for your prayers and positive vibes on Tuesday morning. I head into Brigham and Women’s at 6:30 a.m. Eastern U.S. time. And I pray my thanks for you in my life.

Love,
Marie

*I am not allowed to bathe, swim or shower for as long as I have this thing in. Only spongebaths. I asked what I should do if I sweat. The nurse laughed and said I won’t be exerting myself enough to sweat. Obviously he has not gone through menopause.

Miraculous Medal and Procedure Results

Thank you for all your support this week, through all the ups and downs. Especially the downs.

I recently lamented that I don’t see the everyday miracles like I used to.

For many years, I looked for a religious trip to Medjugorje. Medjugorje is a city in Bosnia where, in 1981, the Virgin Mary initially appeared to six children, and continues to appear to some of them today. Healing miracles have happened there as a result.

A few years ago, a friend strongly suggested that I go, but I didn’t. Then, through a series of happenings at my parish church, that friend and I were able to attend a talk by the one of the children (who is now an adult) and to hear the story of a local man (Artie Boyle) who was famously healed after his trip there.

I was newly inspired to go. I knew that I couldn’t do this on my own, and my casual search for a tour turned up nothing until about 2 weeks ago: Caroline Myss was organizing a trip. BUT it meant that I would miss the first week of school for the kids. One of boys would be getting settled in a new school and I felt that it wasn’t fair to him if he needed my support. The deadline passed, and I didn’t book the trip.

I continued to mull over my decision. Did I miss an opportunity? I felt physically and emotionally stronger than I had in a long time, and wondered if this was my good chance to travel there.

I didn’t wonder for too long though, as the events this past week overtook my life. Still, it remained in the back of my mind.

On Thursday, the day before my procedure, I needed something to distract myself. So, I opened the stack of mail gathering on my desk. Inside one of the envelopes was a Miraculous Medal! It felt like Mary was saying, you can’t come to me, but I can come to you. I am here.

I carried that medal with me, obsessively repeating the prayer for it, until the nurse made me hand it over before surgery.

Wow.

Okay – the surgical procedure. I have been so afraid to go to Brigham and Women’s hospital. My image was that you do things their way, that they have the knowledge and experience, and that I need to just let go and trust. I know myself well enough that I would get frustrated in that setting.

I was so wrong. I wanted them to use my power port, not a vein, for the anesthesia. They did discuss it with me at length, but in the end, I got to use it! There are a few drugs that I HATE and they found substitutes for those. Everyone had a good attitude and was quite pleasant. I cannot say enough good things about my experience there.

As for the procedure itself…The doctor was able to place the stent in one ureter. The other one seemed to be blocked. So, next up for me is a bigger surgery, where they make a hole through my back, into my kidney, and try to wind the stent through that way. I will have to stay overnight in the hospital for that one. (Blecch, but maybe I will again be pleasantly surprised.)

I was able to go home after I woke from the anesthesia, but I only remember waking up in my own bed. That was a little disorienting, but not as much as this: I started having hallucinations. I was having full conversations with people only I could see and hear. At 3:00 a.m, I thought a friend of mine was calling and I had a loud conversation with her over the phone. (My poor husband, awake all night with this) I kept trying to hang up and she had “just one more story.” Still hallucinating, I had another loud conversation with my oncologist. I woke up in a panic that I slept through my surgical slot; I started yelling hysterically, and I couldn’t understand my husband as he tried to explain that the procedure already happened. I woke another time in a panic saying that the kids were late for school. (They haven’t yet started school.)

My husband kept asking me questions like, “What is your name? Do you know where you are?” Sometimes I answered correctly. It all sounds funny now, but at the time, it really scared the kids. The household was a bit crazy.

I couldn’t stand or walk without help, and each time I tried to sit anywhere, I misjudged the distance and my husband caught me.

Finally, around noon today, I felt well enough to get up and take a shower. Yay!

Next steps:

• I have chemo on Thursday next week, primarily because Tuesday is fully booked in the infusion center.
• I will have the stent surgery sometime after that, probably the following week. They will call me to schedule it. I am trying not to think too much about that, but it keeps screaming out for my attention.

That’s about as far into the future that I can look!

Again, thank you for all your support, your prayers, love and caring.

Love and Blessings,
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

That ship has sailed?

Thank you for sharing the joys of this path as well as your help in navigating the bumps. Not surprisingly, my family and I have experienced unexpected changes, big and small.

Along the way, I’ve had a mastectomy, more abdominal surgeries than I can count, plus an ileostomy bag and later, a colostomy bag. I had a port surgically placed in my chest, then removed, then placed again. Chemo sessions meant three days of a needle sticking into the port in my chest, a tube running from that, and that tube connected to a machine and a bag of chemo.

My kids were only 1 and 4 when I started all this. Actually, if you start with the mastectomy, I had only one child who was two at the time. So for the younger one, this whole gig is a way of life.

After each of these surgeries, I was unable to lift the kids for the following couple of months. On my chemo days, they couldn’t cuddle with me for fear of disturbing or bumping the needle in my chest, much less run and jump on me or even tumble around. Given the frequency of these events, we got out of the habit of cuddling at all.

I don’t usually miss it or even think about it. We know that we love each other and life is what it is.

Last night, we joined a party at a friend’s house, hanging out in the backyard. As I sat watching all the trampoline jumping, the dogs running and the many conversations, every cell in my body suddenly craved for my nine-year-old to sit on my lap.

I can’t remember the last time he did that. And I can’t remember ever needing it more.

But, he is nine and we were in public and this was so not happening. I shifted my focused to the present and all the good around me.

Then, he appeared, stood in front of my chair, touched my knees, and sat on my lap.

Maybe we hadn’t had that for years. But we had it right then.

And it was the best ever.

Love to you,
Marie