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

Chemo 9 of 12: Did I get the right chemo?

This was definitely the most difficult chemo treatment so far.

For those of you who told me that they are having a hard time listening to all this, you might want to skip this message.

If you are still here, cool. And thank you. I think my theme song of the week is I'm Still Standing by Elton John. Lyrics are at the end of this for those of you who do not know the song. I put the words in bold that keep going through my head.

There are three ways that I look at the past week:

The Power of Vision
Early on, I think I told you that my vision of chemo was that you walk cheerily into chemo, you get chemo, you get violently ill, then you get wheeled out, hunched over in a wheelchair. Then you feel sick for days on end.

Well, visions are powerful. That was my experience this week.

Maybe I've just been lucky that it took so long before I got this ill from chemo. But wow. And yuck.

The Power of Tears
Here is another angle. I went into chemo just needing to have a good cry. But there never seemed to be a good time to do that. First I was busy getting my vital signs taken and blood tests done, moving from one place to another for those. Then I met with the doctors. While I did tell them that I felt sad, it just didn't seem like the right time to break down in tears. I wanted to have a good, long, cry, and the appointments are kind of time-limited.

So, I figured that I would just have my time during chemo. But, that didn't happen for a number of reasons. Not that I wasn't encouraged. Mary, who was visiting me, kept insisting that I revisit how I was feeling, not to ignore it. But I kept pushing her off. And Eleanor, my friend the therapist, of course, agreed, but, again, I wouldn't really have any of it.

Now, if the floodgates are going to burst, and you don't give them an outlet, they burst through a million other ways. In my case, immediately after I finished chemo, I got sick. Every five minutes. Non-stop. Ugh. First time that happened. So maybe it was all that emotion trying to get out.

Thank you to Barbara, who continued to offer to drive me home between my runs to the bathroom. And a second thank you to her for calling Tiron to come and get me instead!

The Power of Chemo
This session's reaction was wildly unusual for me. AND, neuropathy is a known and expected side effect of the drugs I am on. In fact, it is cumulative, meaning that it is expected to get worse with each treatment. And, mine has. Until now. This time, I had little to no neuropathy. I can stick my hand in a freezer and it feels cold but not painful. I can scoop out handfuls of ice cubes and only feel the cold, no pain. Further, I'm having no fatigue.

The lack of side effects was the most worrisome part for the doctors and nurses. So, we spent a bit of time doing more blood tests and calling the drug company, checking to see whether I got the right chemo. While the results aren't definitive, it appears that I probably got the right chemo but just have a weird set of side effects this time. The drug company admits that they have never heard of these reactions to my particular regimen. Sigh. Always an adventure. Makes it a bit scary to go in next time, for sure. I didn't realize before this how much trust is involved in the whole process.

So, it is one of those three things, maybe a combination, maybe none of the above.

I ran across this quote this week, from the webpage of Dr. Michele Reiss:
Life isn't about waiting for the storm to pass; it's about learning to dance in the rain.

I'm definitely still learning, because frankly, I realize that I'm mostly waiting for the storm to pass! Thanks for hanging in there with me, and for bringing me provisions! :-)

Love, Marie


I'm Still Standing
by Elton John& Bernie Taupin

You could never know what it's like
Your blood like winter freezes just like ice
And there's a cold lonely light that shines from you
You'll wind up like the wreck you hide behind that mask you use

And did you think this fool could never win
Well look at me, I'm coming back again
I got a taste of love in a simple way
And if you need to know while I'm still standing you just fade away

Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind

I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah

Once I never could hope to win
You starting down the road leaving me again
The threats you made were meant to cut me down
And if our love was just a circus you'd be a clown by now

Chemo Spill Kit

No one but me seemed to notice this box in the infusion room. It just felt so foreboding. Two days later when I returned, it was in the same place, but open, with the contents spread on the counter. The nurse said, "oh, one of the patients took a photo of that two days ago." hmmmm, that was me!

Grace and Compassion

Hi guys,

Okay, put a question out to the Universe....watch out for the answer!

I was wondering why I felt such intense compassion when I am in more sorrow, rather than in everyday life.

Today, I got this in my e-mail. I'm excerpting the relevant parts:

Another teaching of sadness is compassion for others who are in pain, because it is only in feeling our own pain that we can really understand and allow for someone else’s. Sadness is something we all go through, and we all learn from it and are deepened by its presence in our lives. While our own individual experiences of sadness carry with them unique lessons, the implications of what we learn are universal. The wisdom we gain from going through the process of feeling loss, heartbreak, or deep disappointment gives us access to the heart of humanity.

Even though this kind of serendipity happens all the time, I am constantly amazed.

Love,

Marie

Chemo 8 of 12: Opening to Grace

If you are still reading these, thanks for hanging in there with me!

Well, the world shifted last week when Avi passed away. There's not alot I can say about that, except maybe that some people, when they leave, leave a hole the size of the Grand Canyon, and I feel hugely fortunate that I got to know him at all.

Even knowing this, I approached the infusion room the way I always did on Tuesdays, peeking around into the waiting room and hoping that he and Barbara were there so that we could visit. Yikes.

Still, the routine was the same old thing, and there is some reassurance in that. My blood numbers were good (yay!). Even my iron levels are approaching normal. And the side effects are currently as expected (the usual visitors -- mild nausea, neuropathy, some unprintable stuff but not bad). I got a primo view of Boston from my chair, a friend came to visit and brought lunch.

After she left, a married couple bopped into the chemo space next to me. I was playing my usual game of "which one is the patient" in my mind -- they were both pretty upbeat and fun. What a weird and funky reality, socializing in that environment. I guess it is kind of like acupuncture. In acupuncture, they stick needles into you, then tell you to relax. It sounds impossible, but once the needles are in, there is really nothing to do but relax, so you do it, even though you are physically restricted. So maybe getting chemo is like that. You have to sit still and get this medicine, and you find a way to be in your new reality. So, we are who we are, and we socialize.

I have a new oncologist (who was one of Avi's doctors, too), and it turns out that she and I have alot in common. I keep feeling like cancer is so isolating; last week, I noticed a book called The Lonely Patient, written by a doctor about a cancer patient. It tells how doctors keep patients at bay, don't really want to know their patients' feelings or how they are truly doing, and how patients sense this and try to protect doctors by sharing only physical details of their illness and not sharing how they are really feeling, and how this can add to the isolation.

So, when my new oncologist asked, "How are you?" I decided to take the plunge and tell her. I recognized that she may not really respond to the opening, and that was okay. But I told her how my four-year-old son made an IV pole with a line attached, hooked it into a toy tiger's chest, and told me that the tiger was getting chemo. Bubble gum fruit-flavored chemo, to be exact. Then he asked if he could take a photo of me so that he could always remember me, and how that just broke my heart. She responded to all that, and that was nice, and I learned alot about her in the process. Like, we both have adopted four-year-olds!

Someone asked what I am learning through all this. To be honest, I have not a clue. If I am supposed to be learning something, I hope I do get it, because I don't want to repeat this class. Maybe I need it to have it written on the sky, or, most likely, in words on a PowerPoint slide. Maybe sent in e-mail.

The closest I can come is this: This kind of thing strips you of so much, and leaves you open and raw. And during this time, for me, compassion arises. Now, I really admire people who can be compassionate in their day-to-day life, and I wish I could be like that. But my life looks something like this. Let's take a normal scene: Grocery shopping and my internal dialogue.

Last year, before diagnosis: "Why is everyone moving so slowly????? Can't they get out of my way!"
After diagnosis, but before chemo: "I don't have time for this!!! Move faster! Can't you see that time is fleeting?"
After starting treatment: "I wonder what they are going through? How can I help them?"
After getting used to being in treatment: "Why is everyone moving so slowly????? Can't they get out of my way!"

Of course, in all my rushing, if I ran into a friend, I would happily stop and chat for 30 minutes. Go figure.

Anyway, if compassion was supposed to be the lesson, I am slipping back to my old evil ways. I did like myself better in my compassionate phase. It would be nice if I could generate that without having my insides ripped out.

The other huge thing is that I continue to be amazed by the generosity of others. I feel so lucky to know people who are further along on this journey than I am, and still take the time to help me out. And I truly appreciate that people have SO MUCH going on in their lives, and still take the time to help and to reach out.

It feels like we are all part of this huge web, and by holding together, we all hold each other up. And I'm starting to really appreciate that. Thank you for your help in getting me there.

Four more remaining.

Love, Marie

Chemo Tiger

While I was out, my four-year-old created Chemo Tiger. The orange and yellow part is the IV pole, and there is a fine plastic wire that connects to the yellow thing that is stuck into the tiger's neck.

I hate that my child knows so much about chemo.

It gets better: My son took this photo "so that he would always remember me." Yikes.

On the bright side, it is encouraging that he chose a tiger!

Chemo 7 of 12: Back to chemo after a break in the routine

Thank you to everyone for all your support, in so many ways, through this journey. I know it must feel like it has been going on forever, and my husband, the kids and I all appreciate your hanging in there with us.

I was able to get chemo this week, and I'm now more than halfway through. Yay! It was nice to have the break from chemo for awhile. I was beginning to feel human again, and I almost forgot what this routine was all like. But now I'm back in the game and wearing my continuous infusion pump. Thankfully, the side effects are not bad this round.

I really appreciate the visits from friends, and apologize to those of you who were there on Tuesday in the infusion room with me -- I got a bit tired in the middle and may have taken a little mental vacation from time to time. But it was nice to chat and have the visit.

The overwhelming piece this time was that Avi was admitted to the hospital that day. Avi is our dear friend, and we got to visit at the hospital on chemo days, because we both seemed to be there on the same days, getting (or, trying to get) chemo. His treatment was not working so well lately, and our emotions were more there, with him in his hospital room.

Spring is starting to arrive here in Boston and I hope that it helps to bring better things for all of us. In the meantime, it is an important reminder to enjoy each day. Thank you so much for being part of ours.

Love, Marie