Wednesday, April 23, 2008

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

Monday, April 21, 2008

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!

Wednesday, April 9, 2008

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