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

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.
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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

Preparing for Radiation

This is the machine they use to give radiation. The flat board in front of it changes shape (has all kinds of attachments) depending on the part of the body being radiated. For mine, I get a little space to put my head, like you do when you get a massage. That is what is pictured here. Then the board (with your body on it) slides under that big round disk. High on the walls are little black boxes. A laser shoots from these and should hit my tattoos; that helps them figure out whether I am in the right position, then they start the radiation.

The scene in the infusion waiting room

Since it would be rude and intrusive to take photos of the infusion waiting room when it is full of people, I wanted to share that picture with you verbally, if you are interested.

The first thing I do, when I round the bend and can see into the room, is to check if my friends are there. I met this couple at my birthday party in 1994, and we've all been friends since. Though I hate that we are both there, I do look forward to seeing them, no matter where it is.

The waiting room is definitely a study in all walks of life and how cancer just doesn't discriminate. There are people from every ethnic group and nationality. Sometimes, it is easy to tell who the patient is, like the woman with the headscarf who came over winter school vacation with her two pre-teen daughters.

Often, I'll notice a family of three: Parents and an adult child. I cannot always tell which is the patient. Most often, like the Portuguese family yesterday, the parent is being treated and the child is the translator.

For the Chinese couple with their son, I wasn't sure. The father and son both sat slouched in the seat, the father is sullen and silent, mother speaks animatedly to the son. Could be the father -- turns out, it was the son.

Another touching scene was of parents and an adult daughter, chatting casually like they were on an errand. Then a name was called, the father stood up with his back straight and shoulders squared. His wife and daughter each gave him a kiss, and he walked back to the infusion unit, alone and just looking so brave. That still breaks my heart.

I loved the two black gentleman, sitting together, not talking. Then a lovely, cheerful, beautiful young black woman entered the room to meet them, the men both lit up and it became like a little party!

There is another man that I see on Thursdays; he dresses, all winter, in shorts and a printed shirt, wanting to defy both cancer and the winter weather. I enjoy talking with him.

Or the skinny black woman with a wonderful headwrap, who told me, they can't do anything to you that you do not choose. She is great!