Monday, June 21, 2010

Life is Good

Sometimes things can be so good that it is scary. I feel like I am at this juncture where all your prayers and support are pulling things together, and I can't even describe how appreciative and awestruck I am. I feel like the power of this group can move mountains, and I am so honored that you are moving this particular mountain. You are recalibrating my sense of what is possible. What a gift.

The big good news is that my CEA level (blood tumor marker) is down to 4.5. Normal is 2.5 and below. I am thrilled that this is moving in a healthy direction!

I'm not sure what specific thing is doing the trick. There is the chemo combined with all the prayers on my behalf, Chinese tea, raw vegan diet, juicing, wheatgrass juice, yoga, mind/body work, acupuncture....exercise should be in there, too, but I'm lacking in that area. In any case, I will keep doing all of that, and hope that you don't mind continuing to do whatever you are doing, whatever you can do. Thank you.

Your support leading up to my PET CT was immensely helpful. I think that was more stressful than I realized, and it made me feel really fragile at that time.

After my PET CT, the plan was to talk with the doctor in D.C. about being a candidate for HIPAC surgery. We still want to talk with him, but since things are going in a good direction, it is hard to sign up for such a huge surgery. I'm glad that it feels a bit less urgent.

This past chemo week was like the others, including the intense stomach pain. Thankfully, it passed, and I didn't need to go to the hospital. The pattern is familiar by now; even the conversations / arguments that Tiron and I have about my condition at different points of the week are becoming predictable. And then the good days help me to forget all that.

This weekend, we went to the amazing James Taylor Carole King concert. I arrived loving James Taylor, and I left wanting to BE Carole King. She is so strong, energetic, inspiring, talented and clearly a focused worker. She was smiling, upbeat and involved in the entire concert. If she wasn't playing piano, she was singing with the backup singers or dancing around the stage. For me, she made the show come alive, and helped me to see how being fully present and involved can strongly influence the experience of others.

And her hair -- thick and curly. I want that, too!

Just as I underestimated Carole King's sheer vibrant presence, I'm often wrong about people. I once tuned into Oprah to watch Randy Pausch (of The Last Lecture fame) but Kris Carr was the first guest. I thought, "who on earth is SHE anyway?" but I listened. She sparked my interest in juicing greens and in Hippocrates Health Institute. Since then, I've attended her workshop as well as Hippocrates and now believe that Kris totally rocks.

I'm constantly reminded that there is more to someone than meets the eye. I'm also learning that is true for other things, cheating just a bit on a food regimen.

I've been eating raw foods and juicing greens and wheatgrass pretty religiously for the past couple of months. About two weeks ago, I felt confident that my body had a huge stockpile of greens and I could eat one small piece of cheese. It tasted good. It felt creamy. It really hit the spot. How about just another small piece? And so I started down the slippery slope. Over a few days, I finished all the cheese in the house. Thank goodness. And, who would notice anyway?

Then I went to my acupuncturist. At the start of the session, she pressed on different points on my legs. When she pressed on a point next to my knee, it felt sore. Our converstaion went something like this:

Me: Wow, that's sore. Feels like a black and blue mark.
Marisa: Here? (she pressed again)
Me: Right there. Yes. Weird. It didn't hurt until you pressed on it.
Marisa: That point processes dampness. Like, dairy. Dairy is a damp food. But you are on a raw food diet.


So, I'm recommitted to my diet. No one else might notice the missing cheese, but that little thing must make a difference in my body.

Talking with some girlfriends, one of whom is a nutritionist, we noted that all the diets that are considered to be healthy also come from tightly knit communities, where the focus is not the individual, but the community. So maybe it isn't the diet. Maybe it is the power of being part of a community.

I am grateful for the power of this community for me and my family.

This week, I completed my participation in a prayer survey as part of a research project at the hospital. The questions in the final survey made me look anew at the support I get from you. Each time I answered a question like, "how often do you feel alone," or "is there anyone you can turn to when you are sad," I renewed my gratitude that you are in my life, in whatever way you can be in the moment. No matter what part of the world you are in, I feel a connection. That gives me energy, and makes me smile.

So while the lyrics from "You've Got a Friend" might be applicable here, these Carole King lyrics (from Beautiful) speak more loudly to me right now:

You've got to get up every morning with a smile on your face
And show the world all the love in your heart....
You're gonna find, yes you will
That you're beautiful as you feel

I hope you are feeling particularly beautiful today.

Much love,

P.S. Chemo tomorrow. Thank you for any prayers and good thoughts, both for a good chemo week as well as good results!

Wednesday, June 9, 2010

Good news from PET CT

Writing this before I get hooked up for chemo....

Thank you so much for your good thoughts and prayers! I JUST got the results of my PET CT and they are good -- yay!

What exactly does that mean?
Well, we know there was tumor left behind in the surgery, but if it is still there, it isn't big enough to show on PET CT. That is a big relief.
There is a new spot on my liver, but it doesn't appear to have the same characteristics that my tumors typically have, so they recommend a follow-up MRI but aren't too worried about it. Again, whew. Okay, not total relaxation, but could be worse, so I'll take it.

My type of cancer also shows up in the CEA levels in my blood, so I get that tested every month. Last time, it was 6.4. Normal is below 2.5. So, there is still stuff in there, but at least it is smaller than it was. I asked them to test it again today. I won't get the results of that until either next week or next chemo. They don't like to give these results over the phone, but many of the folks here will tell me, kindly knowing it is more anxiety-producing for me to wait.

All good things.

Thank you for keeping me company on this journey, and for being there to share this news.

Lots of love,

Monday, June 7, 2010

PET CT this week

First, I want to ask for prayers for my friend and former colleague, Don Arnoudse. He is having surgery for prostate cancer tomorrow morning, June 8.
To be specific, please pray for peace, calm and grace as he heads into the surgery, for the surgery to successfully remove ALL the cancer, for a full recovery after the surgery, and for a clear "call" from the divine for the best full use of him to be in service to others after his recovery.

I know that he would really appreciate your good thoughts and prayers on his behalf.

As for me, I'm doing really well. I really appreciate your e-mail messages and I am quite behind in answering them. But your words stay with me; I think about them and re-read the messages. I just have trouble typing right after chemo, and then it takes awhile for me to catch up.

Chemo week wasn't fun, of course, but it was okay. I had one day where I didn't get out of bed, but that was more due to laziness than pain. Lying in bed with my chemo bag dangling from my chest, I kept weighing the things that I would need to do before I could even get to anything interesting:
-- Clean up all the hair I lost the night before,
-- Drag the bag (I know, I carry it, but it feels like a ball and chain) with me to the bathroom,
-- Change my ostomy bag,
-- Tape plastic wrap on my chest to keep shower water away from the connection between the chemo tube and my body
-- Shower, then clean the hair out of the drain
-- Comb my hair, and get bummed out by all the hair on the comb.
-- Figure out what to wear that accommodates the whole shebang

Just thinking about it made me tired, so why get up.
Of course, by 4:00, I was grossing myself out, so I hauled my reluctant body out of bed and did the whole routine. When I was finally ready to go for the day, it was dinner time! Next time, I'll just get up.

I had that debilitating stomach pain again, but it was only one day. Yay!

All is well now, and it actually takes effort for me to remember all those events, because they feel like they are in my distant past. Overall, it's been a wonderful week filled with friends and fun events. I even got to go to a Harvard reunion -- I didn't go to Harvard, so who'da thunk I'd ever be there...what a thrill!

At the same time, I'm a little apprehensive about the week ahead. My chemo schedule for this week will shift by a day. On Tuesday, I have a PET CT. It is a normal check point in my chemo path, where they use machines (and radiation) to look inside my body for any "hot spots" that might be tumors. My blood numbers look good, so I am both optimistic and bracing myself. Fortunately, I'll get the results on Wednesday.

Following my meeting with the doctor on Wednesday, I'll have chemo. This is instead of my normal Tuesday chemo. Then I will wear the chemo bag from Wed - Friday, and get an injection on Saturday. I like to think that I handle change well, but the prospect of having different nurses on a different chemo day is almost more anxiety-provoking than having the PET CT. All that said, I am relatively calm.

Of course, life isn't all chemo. Last week was Julian's last week in his preschool Yellow Room, and I was lucky to get to go to the events. This week is Aidan's last week of first grade, with lots of activities planned. I will miss the parent breakfast, but I figure it will be okay.

How the kids deal with this has been top of mind lately. Often, I simply push it to the back of my mind and focus on the day-to-day; the logistics and emotions can be overwhelming, and I just want us to be a normal family. This week, though, I felt like "death of a parent" was everywhere I looked, in newspaper articles, radio shows, blogs, and even news from a friend who knew a mother who died last week, leaving her school-aged children. So I've had to face it more directly, though it is a little comforting to know that we are not alone.

I haven't yet found alot of information on how to best help children through a situation like this. Adults have a difficult time navigating a parent's illness and potential death. What about children, who do not have the life experience, longer-term relationship or perspective of adults? My current mission is to learn more about how to help our children through this period, regardless of where this path leads.

I think about this in two ways: how to help them with their feelings right now, and how to help cushion the blow for them if something should happen to me.

As for dealing with their feelings right now, Tiron and I stumble through that day by day. Sometimes things are normal, sometimes we wonder if things are normal (we all have our "weird" moments, just in regular life), and sometimes, things are pretty heavy and we muddle through.

In case something should happen to me, I wonder how to best build a net that might catch them and cushion the blow. As hard as it is for me to think about this, I realize that it would be even harder for them if I don't. Plus, I don't know what kinds of nets they might need. For example, would they be interested in the stories that a mother might tell them when they were older, like what they were like as babies and the strengths we saw in them at an early age? Would they be interested in factual information about me? Stories about our times together? If you have any insights into this, please send them along.

Right now, I look around for clues. Though Tiron would be there for them, and I think he would do a great job, I do wonder what holes would exist and how those might be filled.

For example, almost every Friday, I attend an assembly at Aidan's school with the pre-K through fourth grader students, and other parents. The fourth graders take their turn reciting a poem in front of the assembly, a milestone in their time at the school. I love this part of assembly. I listen to each of the kids, thinking about why they chose the poem they did, how they practiced for this moment, what their speaking style is. I love seeing the families as they cheer for their children. And I wonder, if I am not here, who will listen especially to my boys, to help prepare them and to cheer them on?

A couple of months ago, a friend came with me to assembly. I sit with the parents, not with Aidan, but she grabbed a chair and he sat on her lap. He was incredibly comfortable with her, and she was completely present with him. Watching them together made me relax a bit and realize that she would be there for them, and that maybe, in some way, things will be just fine.

And I started to think -- whether or not I am here, hopefully our children will learn more about me through stories from Tiron and our friends and family who know me in different ways. This gives me a new perspective on the time we spend together with friends, how we get to know each other through the smallest of interactions, and how we become part of each other as time passes. Why we choose the jobs we did, whether we choose to exercise or chow down (or both), to read a book or have a party, how we talk about the major and minor events that are important to us, the decisions we make about how to spend our time -- we learn so much about each other in so many subtle ways. We become interconnected through these conversations and interactions, and we hold the ongoing stories of each other's lives.

Deep inside, I feel like that is what will carry them both through. The social web we create will hold them, always. And maybe that is the strongest net of all, for me as well, no matter where this path leads.

Thank you for helping us all through this time, for being the net that catches us. Thank you for always stepping in, even when we don't know what to ask for. Thank you for being so steady for us in an unsteady time, for giving of yourself so unselfishly, and for keeping your humor along the way.

Prayers to you for a great week, and thank you for your prayers for me!

Love, Marie