Monday, May 24, 2010

Some ups, some downs, and the power of words

Chemo tomorrow (Tuesday). The ball gets rolling at 7 am.

It's been a great two weeks in so many ways: parties to celebrate graduations, reunions, life (literally went to a Celebration of Life party), and the fact that we can dance with our 3 year old. We had a quick but fantastic trip to NYC with the boys, visits with friends....I feel so lucky to be well enough to enjoy all that.

My last chemo went smoothly. Typically, I have chemo on Tuesday, wear my continuous infusion pump on Wed and have it removed on Thursday. Also on Wed and Thursday, I take anti-nausea medications. But on Thursday, I felt so well that I forgot to take them. Woo hoo!

Never fear, though -- life is not without its checks and balances, and I got sick the next week (my non-chemo week), with the same thing that sent me to the ER two weeks prior. Late Monday night, I could feel it coming on, and the stomach pains kept me from moving around. I stayed up all night, trying to keep everything down. I hate getting sick, and I'm a wimp with pain. I also knew that, if my husband caught wind of this, he would insist that I go to the ER, and I preferred to stay home.

At 5:30 a.m., the gig was up. And, my husband heard me.

He was out of bed like a shot, showered and dressed before I was done. He appeared like Superman on the scene, standing over me with his hands on his hips. Since I was alternating between praying to the porcelain gods and being doubled over on the nice, cool, clean bathroom floor, I really wasn't in the best position to argue. Of course, that didn't stop me.

"They will just do tests and observe. It is way easier to be sick at home. I'm not going. And you can observe me here."

"I AM observing you. You need to go to the ER."

I could not imagine laying on the bathroom floor of the ER. I had to stay home. I was convinced that this would run its course. At the same time, the voices from the ER docs, two weeks ago, echoed in my head. "You could have a bowel perforation and die."

I made my choice to stay home, but these words running through my head scared the crap out of me. (Pardon the rectal cancer joke.)

Thankfully, my discomfort ran its course, I avoided the ER, and got to recuperate at home. I felt more relieved than right. And more than a little lucky.

The rest of the week provided lots of opportunities to reflect on the power of words. Mostly, I live in a small circle. When I leave my house, I primarily interact with friends, or friendly people who are affiliated with my sons' schools, or neighbors. When I venture into Harvard Square, I encounter the earthy-crunchy people of Cambridge, who typically like to live and let live. It's all peace, love and rock and roll, most of the time. I admit that I prefer to surround myself with people who I generally like, and, while I think I am open to anyone, I have few random encounters with people much different than my social circle.

Feeling strong one blue-sky day, I went grocery shopping for the first time since January. My parents had a small grocery store when I was growing up and we all worked there. I LOVE shopping for food, and I chose a grocery store outside Cambridge. Walking among all the fresh fruits and vegetables, checking out the olives and cheeses, and smelling the prepared dishes was a completely sensual experience for me.

I was already overjoyed, and it got better: Leaving the store, I ran into two separate friends in the parking lot. So fun!

Then, for about a second, I blocked a woman driving her car. She was clearly angry about it, and I really didn't mean to annoy her, so I apologized. In reply, she screamed, "Would you shut up?" Wow. Suddenly, I marveled that this wonderful shopping and social experience, even the sunny blue sky, could be totally wrecked by one person's strong words. While it still stung, it was, luckily, so out of proportion to the situation that it was hard to take it too personally.

I thought about this for a long time over the next few days and looked at it from lots of angles. Harsh words and feelings transfer strong negative energy, and good words and feelings transfer positive energy. But why do the bad ones have such staying power? Why can they crush the good feelings? I don't know. Maybe the good ones are more fragile, or maybe, when those good feelings come our way, we have a responsibility to protect them and keep them alive and going.

Once I returned my focus to the many good parts of that day, her words started to lose their sting.

On top of the words, I realized that I carry around alot of assumptions I didn't even know I had, like...
...if I am nice, people will be nice to me.
...if I take care of my body, I won't get sick.
...tomorrow will mostly be the same as today.

Well, apparently, I'm not really entering into valid agreements with the universe!

But I'm happy to enter into agreements with you. I admit, you are part of my circle of choice, so it isn't a huge risk. But here is one: I promise to take care and nurture all those good feelings and prayers you send my way, so that any little good thought, prayer or wish has the potential to grow, and I will send those feelings right back to you. They truly carry me along, and I appreciate any you send for good chemo this week!

One short, completely unrelated story:

This morning, the boys asked if they could catch a rabbit in our backyard. I figured that was harmless and said yes. To my astonishment, they returned about five minutes later with joyful expressions and a baby rabbit.

When I asked why they took the baby rabbit, my six-year-old replied, "Because I can't catch the bigger ones."

I love that he knew his limitations and was undaunted by them, figuring out a way to go after what he wanted. I love seeing the happy eyes of both boys, filled with the hope that they would get to keep the rabbit. (They did not - we returned it to its mama.) And I love that both boys worked together to do this, even though it completely freaked me out to see that baby rabbit in my house.

I hope you find a way to catch whatever makes you happy, and that you get to keep it, too.

Love, Marie

P.S. I need to mention that a friend, Andrew, passed away last week from colon cancer. Three of us were diagnosed with colorectal cancer around the same time, though we've each had our own journey. He was younger than I am, and has three small children, around the same ages as mine. It is sobering to think of the ripple effects of this disease.

Monday, May 10, 2010

Not great week morphs into something better

The good news is that I made it to see Aidan's play! It was so fun to watch all the kids, and Aidan did a great job. Thank you for your support there.

All is well now, but, last week was really pretty uncomfortable. I had my normal "not so fun" post-chemo days, but I was at least up and around.

I usually count on having a "chemo week," which I accept as unpredictable, followed by a "normal" week where I can recharge. But the bad days were stretching into my "normal" week -- no fair! I had severe abdominal pain and was truly unable to move for hours and then days on end, culminating with going to the ER mid-week. I really admire people who can withstand pain. I like to think I have a high threshold for pain, but at some point, physical pain really brings me to my knees.

The ER folks were fantastic. The IV nurse actually noticed that I might need rest more than an IV at that moment and left me alone. I got an x-ray -- no problems, and how handy to have Tiron (my radiologist husband) in the room to read it immediately. I started to feel better and better -- it must have started to clear itself up at that point. I decided to refuse the blood tests and the CT scan because they didn't seem to be necessary. And though the doctors wanted to keep me overnight for observation, they did let me go home instead. Yay!

I realized that I was less than optimistic after hearing all the worst-case scenarios described to me in the ER (like, if you leave and your bowel is perforated, you could die). I loved that my PCP called me the next morning and said, "This could very likely be a one-time occurrence, and it's over." That kind of positive energy is so contagious, and very much needed. I went from dragging my feet to walking on a cloud.

Though I wasn't depressed anymore, I still felt a bit sorry for myself about my bad week. Then, I got into the car, and the soundtrack for Jesus Christ Superstar came on. As the story unfolded (of the seven days before the Crucifixion), I thought, Okay, THAT is a bad week.

So, not to be a downer, but speaking of bad weeks, I'm realizing at this point, I know so many people who are living with cancer. They go in for their treatments, they do what they need to do every day, they worry about the future, they live in the present. In the grocery store or walking down the street, a casual observer would not realize they are struggling in ways different than anyone else. I always pictured cancer patients to be skinny, bald, on oxygen, or in wheelchairs. But that isn't always true, fortunately. They pretty much look like everyone else. And it makes me wonder what everyone is struggling with -- that woman I pass on the street who seems to have it all together, the man who waits a little too long when the traffic light turns green. But it doesn't make sense to focus too much on it, because they aren't focused on it at that moment either. There is so much more to life.

Not only are they living, they are living in ways that their doctors would never have predicted and maybe have never seen before. For several of them (and I hope, all of them), their cancers are shrinking and disappearing. And that gives me hope, too.

I want to share two disconnected stories with you. One night, we had dinner with a couple of musicians, one of whom pointed out that our very loud little boys have resonance. I didn't know what that was, so he described it roughly like this: Their bone structure amplifies the sounds they make, making their voices ideal for projecting in singing and theater. What a fun way to look at something that I previously felt was just, well, loud! I also realized that it would be an uphill battle to focus on quieting them down (even though I still try!) and maybe I should spend more energy helping to channel this rather than fight it.

The other is....I have been trying to say "yes" more often to the kids. Sometimes, I say yes when I should have said no and screw up royally. But, the other night, when my three-year-old asked for a popsicle before dinner and I said, "Yes," he enthusiastically responded, "I LOVE yes!"

I hope you get lots of yeses to things that bring you joy today and always. Tomorrow (Tuesday) is chemo, so do send your healing prayers if you can for good energy and for any cancer cells to disappear, for me and for all those living with problems that may be out of their control.

Love, Marie