Wednesday, March 26, 2008

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

Thursday, March 20, 2008

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:


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.


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

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's not sane

Tuesday, March 18, 2008

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.

Monday, March 3, 2008

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!

Chemo six of six: Phase One (of three) done

Message is long, bottom line:
Finished Chemo Six of Six -- phase one (of three) done.
Radiation is up next. I start the basics next week, radiation itself on March 17.
Things are going pretty well overall, and I am riding on all your support and am very grateful for it.

Monday, day before chemo:

Well, my final chemo for this segment is tomorrow and I wish I could say I was psyched, but mostly, I'm feeling like I can check one thing off my list. Whew. But I'm not counting my chickens, blood counts have to be good, and I wasn't as focused on building them this time around.

Since I last wrote, my life seems to be a series of "be careful what you wish for."

Wish #1: Tattoo on my lower back

I used to wish for this, but I'm over this one now. I guess I forgot to tell the Universe.

I met with the radiology oncologist last week, to go over the risks and "rewards" of radiation therapy, to help me decide whether or not to do it.

My radiation oncologist and his resident are truly a funky team. He is about my age, Asian, very kind, nice and smart. Seems to be reserved. His resident is this tall, beautiful black woman with braids all over that reach the middle of her back. She wears stylish clothing and heels. I was in awe and I LOVED her style!

He went over all the risks, both short term and long term, as well as the benefits they feel it has.

The main benefit: it reduces the risk of recurrence in the same area. This is good because, well, no one wants yet another cancer. Much less, the same cancer. I mean, been there, done that. And, for the area where my cancer was, if it recurs there, my quality of life would be impacted. No shit. okay, don't take that literally, just a little colon humor! It is just that cancer impacts your quality of life anyway, so it was a funny way for him to describe it. And, a recurrence in the rectal area is more difficult to catch and treat. (The chemo I've been having reduces the risk of distant recurrence, but not local recurrence.)

Risks: I won't go into the long list of risks here, except to say one of the risks is of a second cancer developing. Given that this is already my second cancer, this risk does not seem small to me. So we talked about the types of cancers that might result, etc. so that I can monitor that as well as I can. Ugh.

Oh, and it is likely to throw me into menopause. Menopause and chemo -- what a combo. Watch out world!

Because I have two small children and I'm basically still a product of Catholic school, I tend to defer to authority. Still, I thought alot about this, and my husband (a radiologist) researched it as well. I decided to take a deep breath and move forward with it.

Thank you to everyone who gave me cautions and questions and positive comments for the radiation therapy. It helped alot in preparing for that meeting, exploring the facts and my own feelings.

So, next Monday (March 10), I get a CT scan so that they can give me tattoos on my lower back to precisely mark where they should position the machine day after day. The tattoos will be dots the size of a freckle; I can always turn them into an interesting design later.

Wish #2: Maintain my current weight

After my surgery in October, I lost 15 lbs. Since starting chemo, I gained about a pound every two weeks. (You get weighed every time you step into that doctor's office, so I know. I never used to weigh myself. Now I feel like I am on Weight Watchers.)

Last week, I reached the point where I said, okay, I've gained enough weight for now. Mostly, I said it to myself (and now, you), because no one wants to hear a chemo patient complain about GAINING weight.

Then, over the weekend, I had some -- let's call them complications -- and the doctors wanted to explore further before continuing my chemotherapy or radiation. As in, make sure there were no new tumors (we have since learned that there are not).

Sometimes this feels like a game show -- cancer in the lymph nodes? BING -- you win chemo. Complications from your colon? BING -- you win a colonoscopy.

I was quite impressed with how quickly they could schedule the colonoscopy. While it is nice to get an appointment right away, you know it means that the doctors are concerned. In the prep, I lost a few pounds. Hmmm. Not exactly the WAY I wanted to maintain my weight, but I guess I got my wish....

I feel like I am rubbing Aladdin's magic lantern and just saying all the wrong things! After all this, I will be more thoughtful about my wishes.

Wish #3: Feel less like a "patient"

Last week, the Boston Globe had an article on Designer Hospital Gowns! So, I'm very excited about selecting one or two of these to wear for my treatments. They are a little pricey (by my cheapo standards) and I plan to burn them after this is all done, so I don't want to buy too many. But I'm thrilled to find them.

Chemo day:

Thankfully, I was able to get this last treatment -- little happy dance here.

My white and red counts were good, but I learned today that my liver numbers have been steadily increasing, so today they lowered the dose of some of my chemo. I guess the idea of getting chemo is to kill as many cells as possible without killing the person. So even though I am feeling pretty good overall, it is affecting my liver. It should rebound, though. It felt a little like a downer, like I didn't get to go the distance, but it is also important to learn where the boundary is.

Today was pretty low-key -- it was nice to have some visitors, and I got my favorite chair with a great view of Boston.

So, here we go, again with the anti-nausea, anti-constipation drugs, the fatigue and neuropathy. It is kind of a familiar routine at this point. And it's done for awhile.

I can't thank you enough for all your support, in so many ways. I know that some of you from far away feel like you can do nothing but send good vibes, but those are HUGE, as is everything that those of you nearby have done to support me and my family.

Love, Marie

Sunday, March 2, 2008

Colonoscopy results good!

Hi everyone --

Just a quick note to let you know that, other than one extremely
annoying nurse, the colonoscopy went well and nothing bad was found.
Woo hoo!!!!!

Love, Marie