Miracle meeting

It was another free day today, but so much happened that I am not sure I can remember it all. 

One bit of info: Many of the folks in my group have seen orbs in their rooms and have felt the entities work on them. For example, this morning, one guy woke with this wild pattern on his back. He is an MD from LA and was puzzled by it. Everyone really wants the entities to visit them and do their work.

Me, I'm scared. Petrified. I sleep with the light on. No joke. So my prayer since Sunday has been to get over this fear so that I can comfortably ask the entities to do whatever they need to do, and that I can hear from them what I need to do. 

This morning as I was getting ready to go out, a young boy came to visit me. He died several years ago and is the son of a woman in the group. He wanted her to know that he was happy and okay. I think also that he came to visit as a way to ease me into all this, as he was young and sweet and non-threatening, he arrived in the daylight so not scary, and he didn't have an emotional connection to me, so his visit wasn't loaded with that.

If the entities never give you more than you can handle, then, okay, I was able to handle that.

It was funky and marvelous and I went about my day. I went to the Casa and saw the enormous amount of vegetables being prepped for this week's soup. I sat and meditated and prayed. I had lunch with our group and joined in the communal singing at the Casa, even shouting out songs that I wanted to hear - I was the most vocal one there and was so uplifted by song.

We returned to our pousada for a meditation and clearing session, and then dinner, complete with a birthday cake.

After dinner, a bunch of folks left for the Casa, and I had meant to go but was in the middle of a conversation with Ig (short for Ignatius). Remembering my feelings from yesterday, I actually interrupted the conversation to suggest we go to the Casa. Unusual for me, and good.

It was dark out, and we took our cameras to go orb hunting. (I'm trying to take photos of other things, but the orbs are so fascinating!)  My first few photos showed no orbs. Then Ig suggested I call to them, and once I did, they showed up all over the place! We were having a great time when this guy interrupted us.

He spoke fabulous English with a strong foreign accent. He asked whether we believed they were orbs or dust; he wasn't sure what to think. So we took photos together and compared and commented. Ig and I both thought that he felt like a strong skeptic.

When we exhausted our conversation about orbs, we asked him how long he had been here. Slowly, he started to tell his story. 

In summary, he and his wife and daughter have been coming here since 2008. His daughter (now age 20) was diagnosed with a brain tumor in 2005. After two unsuccessful surgeries, chemo and radiation, the doctors told him that there was nothing more they could do. They traveled to different places in the world to get help for her, and then heard about this place.

They came for 3 weeks in 2008, and the entity told them that they needed to stay longer. They had to return home, so they did, but returned in a month to stay for six weeks, doing all the work that the entity prescribed.

They returned the next year for five weeks, and when they got the MRI after that, there was no sign of tumor! 

However, the tumor had done quite a bit of damage so they returned here to Brazil. The entities said that she wouldn't fully recover, but she could get to 90% and be independent and take care of herself, and they were happy with that. This family takes it one year at a time as far as traveling here; the economy isn't good enough for them to plan ahead, and he admitted that finances are difficult, even through he seems to be smart and well-educated. This year, they are here for six weeks (and are staying at our pousada). I figured, it was enough cost and effort that they must believe strongly in what happens here.

As I understand / recall, most of the work prescribed to her is about having a connection to God through deep meditation and a strong faith.

It felt like a miracle story, the first one I heard firsthand, and that alone was amazing. But wait, there is more!

Before we parted, he asked our names, and told us that he was from Romania and that his name is Livio. 

I was a bit stunned - you don't hear that name often. Growing up, my father's business partner was named Livio, and he was like a second grandfather to me, a strong and loving presence in my life. I had been thinking of Livio occasionally on this trip. It isn't like I think of him on a regular basis, so I kind of marveled in my mind that I had been thinking of him and that this man had the same name.

We said goodnight and parted ways. 

Ig didn't know any of this when he stopped me and said, "I felt like he was talking to you, like he wanted you to hear that story. And what an unusual name. I have never heard that name before."

So, I feel like I was visited by a second spirit, of Livio, tonight, appearing through a human form, something I am quite comfortable with and could completely handle.

And now, I am to follow a ritual to have the stitches removed from my spiritual surgery. Talk about stepping into your fear. But I am starting to get the feeling that it will be all right, and I am breathing to let that feeling grow.

Signing off, full of marvel and love,

Marie

Chemo 10 of 12: The power of prayer and Ms Webster's dog

I feel like the finish line is in sight. I hate to count on that, but I am hopeful.

Thank you for all your notes of support. Even when I can't answer them, I love getting them and reading and re-reading them. Thank you for your prayers and hope and love.

This chemo round, thankfully, went much better than my last one, and more like my earlier ones, with one exception: Before they gave me chemo, they filled me so much anti-nausea medication that I slept through the whole thing. Again, I was wheeled out of there, barely conscious, but at least I didn't get sick.

In the days following this chemo, my neuropathy and fatigue returned, kind of unwanted but familiar companions, so that is reassuring. What used to be "mild nausea" after chemo is now more insistent, but still manageable. Mostly, I'm in bed from Tuesday - Sunday. If I absolutely have to go out, you'll see me roaming the streets, trying my best to stay awake. On those days, I don't remember most of what I say or do, so you'll need to repeat those things to me!

On Thursday morning, my four-year-old son took me to see and hold Ms. Webster's dog. Now, I don't actively dislike dogs, but I'm not much of a dog person. My son heard that dogs help people get well, and he wanted this for me. So, I held Ms. Webster's dog.

Later that day, I had my pump removed. When my son got home and saw me without the pump, he was overjoyed. His eyes were filled with pure light. He kept exclaiming, "I KNEW IT! I KNEW IT! I just KNEW Ms. Webster's dog would make you well!"

Who am I to argue? Earlier last week, I attended a Pentacostal .... something. Revival? Prayer Service? Healing? Not sure what to call it. It falls into the category of "I'll try anything." I have to say, it was wild. and Powerful.

It was led by a southern white preacher (complete with toupee) and his supportive blonde wife (sans the Tammy Faye makeup). I was a little distracted by the way he cupped his left hand behind his left ear everytime he said "Hallelujah!" From the crowd, there were lots of Hallelujah's and Amen's, waving hands, some dancing / swaying in the aisles, others kneeling and bowing low in prayer. As a Catholic, it is definitely a different kind of service for me, but I am curious about and open to all religions. So while I couldn't get into it in the same way as many of the other folks, I stayed to see what this was all about, as much as I could learn. And, there may be some healing involved! It was worth a try.

It was held in a church in Central Square. Actually, it was originally scheduled to be held in the Charles Hotel in Harvard Square, which, weirdly, gave it a bit of credibility in my eyes. But, earlier that day, they moved the venue to a church in Central Square, which somehow seemed more fitting. Since I was already planning to go, I hopped the T to Central Square and found the church.

(For anyone not familiar with parts of Cambridge, I would describe the Charles Hotel as respectable and higher-end, and Central Square as an area that is diverse and comfortable for anyone who lives on the fringes of society.)

I wandered up the aisle on the right side of the center, and took a seat on the aisle of a pew a few rows back from the front. This way, if I stayed, my friend, Lisa, could find me. Or, I could easily escape if I needed to! From here, I could see most of the action, while keeping a comfortable distance from all the fervor.

Soon, Tyler joined me. He seemed to be a very nice young man from Texas. His wife was home experiencing the first trimester of her first pregnancy, and he couldn't find the friends he was supposed to meet. So we sat together. He practices a religion where you face each other and participate by sharing your thoughts and ideas, so he was out of his comfort zone as well.

THEN they asked everyone to hug and greet everyone else who was nearby. Yikes. I first turned to Tyler and said, "This is weird for me." But everyone seemed to be pretty nice, I decided to think of it as a "sign of peace" thing (from the Catholic Mass), and it did get things moving. Since this seemed like the kind of service where it was okay to talk to each other, Tyler and I talked a little bit. He also did some texting and writing, and I noticed that the folks in the front row were taking photos with their iPhones. The open use of technology made me more comfortable, and I relaxed and decided that anything I did would be probably socially acceptable here.

Lisa soon joined me and the three of us kind of got into the service in our own way. The music was long and powerful, and I started to feel a bit enveloped by the whole thing, in a good way. Sort of like being surrounded by this puffy cloud. I had to leave after two hours (and people think that Catholic Masses are long!), so I said goodbye to Tyler (who said a nice prayer over me) and to Lisa (who sent me off with good vibes). I took the T home from Central Square (completely forgetting that my white cells counts are low and I shouldn't expose myself to the germs of the general public -- oh well).

When I got home, Lisa called me on my cellphone. They had reached the "healing" portion of the service, and invited those in attendance to call anyone who needed healing but couldn't be there. So she called. What a sweetheart! I couldn't hear the words very clearly, but I stayed on the line. And, weirdly, this intermittent pain in my liver, which I had since my MRI in late November, just vanished. It went away in a way that it hadn't before. Just gone. I'm both suspicious and loving it. Mostly loving it.

I wanted to say, "Just call this number, and for 99 cents a minute, you can be HEALED!"

Between that and Ms. Webster's dog, I'm doing pretty well. I wasn't supposed to get this pain-in-the-butt disease anyway, so who is to say what works, right? Frankly, chemo feels a bit like voodoo to me, and it has uncomfortable side effects to boot. But...I'm doing that, too. When you don't know what to do, best to cover all the bases.

At the core, though, this reaffirmed for me the power of prayer or any kind of intention, as well as the presence of angels in any form. Thank you for being part of all that, in such a huge way. Every good vibe you are sending this way has its own impact, and all the ones together are making positive changes, both for me and, I would bet, for our planet. Every little bit of love and peace helps.

I hope you are having a truly lovely Memorial Day weekend, remembering all who sacrificed so much for us, and, at the same time, enjoying the start of a beautiful summer season because, well, we can!

Love, Marie

Radiation is off - cancelled altogether

I interrupt the regular every-other-week message for this special announcement: No more radiation treatments. At all.

Monday and Tuesday were really long days at the hospital. My white count just seemed to be dropping to the basement after each treatment. I ended up doing three treatments over two weeks. In the end, it was determined that radiation would likely do more harm to my bone marrow than good for my cancer prevention program, so we nixed it.

I was quite impressed with the team of doctors who came together at a moment's notice. That is always a bit daunting, to see them drop what they are doing and come from various corners of the hospital.

I'm still processing that meeting. I thought that low white count was a normal side effect of chemo. Apparently, I present this in an usual way. Lovely. As in, "I've honestly never seen this before. I'd like to stay involved to see how this turns out." Hmmm. Not a reassuring statement from a doctor, but good to know, and doesn't sound horrible horrible. Besides, my attitude is always that there is room for one more at the party, so any doctor who wants to be involved, come on in!

Speaking of more opinions, I learned that mine was a case study at Dana Farber because my case is unusual. I'll spare you the details, but I got to hear the ideas of the other doctors at the conference, so that was cool.

Anyway, change in plans. I start chemo again on April 8, back to my every-other-Tuesday regimen, followed by two days of continuous infusion chemo (and the pills, neuropathy, etc.). It's kind of the devil you know, and there is some comfort in that.

Sometimes, this path really stinks. I hate not knowing if I will be at the hospital one hour or eight hours. I hate wearing that pump. I hate the side effects of chemo. I hate having the energy to do only one thing each day. I hate that I see other people there who are having a hard time, and it breaks my heart that they have to go through that. I hate that I found the book Oliver's Story in the infusion room. (Oliver's Story is the sequel to Love Story, where the main female character dies of leukemia.) And I hate that I was compelled to read that book while I waited.

I hate that my kids are experiencing this through me, and that there are times that I can't do normal things with them. I hate that we can't plan ahead, even to have a playdate, because I seem to always get suddenly called into the hospital.

But, it is good that my schedule is flexible enough to tolerate long doctor appointments, that they have this traveling pump so I don't have to sit in a hospital room for two days to get the infusion, that there are drugs to help with the side effects, and that I am able to do one thing each day. It humbles me to see others in the waiting room. And I'm hoping that my kids, going through this, develop strength of character or some other positive attribute as a result.

I sometimes feel like I am rowing down a river with a strong current, and the river is filled with rocks, both seen and unseen. But if I pay attention, there are guides along the way.

The doctors have been really on top of all this, and they are great guides. I get to work with the Fellow I liked at Dana Farber -- he moved to MGH. The radiation oncologist is smart and caring, and today, I met the oncologist I'll see while mine is on maternity leave. I really like her. The hematologist I adore is staying involved. And I get to keep my chemo nurse through all this. Fortunately for me, she used all her vacation on her honeymoon so she will be here through my treatment. Yay! All these people listen really well and have insightful thoughts and experiences to share.

There is a person who works in the infusion room with the same last name that my older son had at his birth. Wild. On top of that, this fine gentleman at MGH taught me alot about meditation and breathing.

The other patients are also good guides, each in their own way. What a diverse world we live in!

So, while this path sometimes stinks, I am reminded on almost a moment-to-moment basis that it is so important to be in this moment, that we have this moment, and that is everything.

Thanks for listening to this saga. It has been a crazy two days. I hope that yours were more sane, but I suspect they were crazy in their own ways. I'll be back to you on April 8 or so!

Love, Marie

Radiation cancelled for this week

Thank you for the prayers and good wishes and positive energy and notes and letters and cards and food and EVERYTHING!

Here is the high-level summary. Details are below.
Got the tattoos and did the dry run for radiation, but due to low white cell count, my first week of radiation and chemotherapy was cancelled. We'll try again next week.
----------------------------------

Last week, I got the CT scan and tattoos to set up for radiation. I had to drink a drink before the CT scan, but it wasn't too bad. The IV is always terrorizing, so that was normal. Getting the tattoos felt like getting pinched by a needle, but it wasn't too bad overall.

This week was supposed to be my first week of the combined radiation/chemo therapy, for any of you keeping track.

My normal routine is supposed to look something like this:
Mondays: Go to the infusion room (ugh -- even just typing that made me nauseous). Get attached to the pump so that I can have continuous chemo five days a week while I am getting radiation. I get to wear this thing five days a week now. I thought two days a week was onerous!
Monday thru Friday: Go to the radiation room, get radiated. Leave. Radiation takes about five minutes, but you need to allow an hour because you just do.
Friday: After radiation, they remove the pump and draw blood to test my white, red cell counts, liver, etc.

This week, it looked like this:

Monday

I thought this would be Day 1. But, it was just a simulation, kind of like a dry run.

Under the category of "Angels appear in various ways", someone from my yoga class used to head that whole department at MGH. So she met me there and introduced me to everyone to help things go a bit more smoothly. It was fun to see her outside of yoga, and incredibly generous of her to get up early and spend the morning with me there. I don't normally see her outside of yoga, so it was one of those funky coincidences that one can only marvel at.

Tuesday:

So, I thought THIS would be Day 1. In some ways, it was. I arrived early, went to my normal infusion nurse and got hooked up to my chemo bag (the continuous infusion pump that I am supposed to wear five days a week through radiation), then made my way to radiation, which is in the basement of another part of the hospital.

Because these machines need to be stable, they are typically located in the basement of a building. For a claustrophobe like me, that can be crazy-making. But, the building designer kindly put stairs within sight of the waiting room, and at the top of the stairs is the door to the outside. That helps!

Got the radiation done. People were really nice, though for me, someone who doesn't even like to use a microwave, it was a funky thought to be purposefully irradiating my body. For my radiation, I lay face down on the table and they line up lasers with my tattoos. Then everyone scurries out of the room while the radiation happens.

Went home. Got a phone call -- My white cell counts were too low. Return to the hospital and disconnect the pump.

So, I got a little further on day 2! But, no chemo or radiation this week while we wait for the white cells to rebound.

It's nice to have a week off. Another week to get used to the idea of living with the pump. I get to take showers without worrying about getting it wet, and I get to sleep without worrying about tangling myself in the tubing. Woo hoo!

Of course, it puts off the treatment for another week, but let's not look at it that way...And after that little bit of radiation, I needed a nap, so I can see why people say that I will likely experience fatigue.

A couple of other things: The waiting room for radiation is WAY more chatty than for infusion. In the infusion waiting room, people don't really talk with one another. In the radiation waiting room, strangers compare cancer stories. And, it is sobering. You hear things like, "Hey, Dad, he has throat cancer, too!" and "What stage are you?" The only other time I've heard strangers open up so much to each other is on an airplane. And, like I do on an airplane, I sit and read my book. It's a bit much for me.

The kids are doing alright. My four-year-old is getting used to the idea that doctor appointments are non-negotiable, but is a bit tired of it all. (join the club, I guess) My one-year-old is, well,your typical 20 month old, and mostly, he just wants someone to throw a ball with and sometimes, at.

My husband is hanging in there. I figure that it is a good thing that his best friend and I are both at MGH. Unfortunately, between accompanying his friend and me, my husband is there often enough that one of the doctors asked if he professionally drives patients to their appointments. We also have another friend who is going there (for a completely different reason), and yesterday, my husband was there with me, then there with his friend, and then ran into our other friends. We need to expand our world and find better meeting places.

The song stuck in my head this week is No Rain by Blind Melon. Who knows why. Lyrics are below if you are interested. Maybe it is oversharing. I put the words in bold that stand out to me.

Well, I'm psyched to have a week off, away from the chemo pump. In fact, today, for the first time since I started treatment, I've been able to do more than one thing during the day. Yippee! I hope that you are having an awesome week, too!

Happy Spring!

Love, Marie


No Rain by Blind Melon

All I can say is that my life is pretty plain
I like watchin' the puddles gather rain
And all I can do is just pour some tea for two
and speak my point of view
But it's not sane, It's not sane

I just want some one to say to me
I'll always be there when you wake
Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made

And I don't understand why I sleep all day
And I start to complain that there's no rain
And all I can do is read a book to stay awake
And it rips my life away, but it's a great escape
escape......escape......escape......

All I can say is that my life is pretty plain
ya don't like my point of view
ya think I'm insane
Its not sane......it's not sane