Monday, March 29, 2010

Feeling so much better - how to say thank you and give back?

It is not lost on me that this is Holy Week, and I hope you have a very blessed Seder or Easter (or both). And for those of you who celebrate neither, then simply a very blessed week!

I decided to write BEFORE chemo this time, because it has been such an AWESOME week and it is way more fun to spread that kind of positive energy!

I believe that several things that contributed to this most incredible week:

I am finally pulling my head out of the sand and noticing more of what is going on around me.

Two things stood out:

I read a book called Making Toast. It is written by a father who moved in and helped to care for the young children of his daughter, after she died suddenly at 38. It was not as depressing as it might sound. And a line from the book stood out (at the risk misquoting this):

"You are not the first family to experience this, and you are better equipped than most to handle it."

I feel like that is so true of our family. Though this path isn't easy, it is much harder for many others, and we are very aware of that.

And, the priest on Sunday asked us to pray for an 8-year-old with a brain tumor. THAT was sobering.

So, I think I feel better because life is finally not "all about me."

My energy level is back to normal, and I've been thrilled to do very normal things. For example, we were invited to a birthday dinner party, said yes, actually were able to go, had a great time, and stayed till the end. On top of that, Tiron and I didn't think about cancer once that whole night. It was so fun; I am still carrying the glow from that!

I started my Chinese tea. It is truly (and maybe literally) wild. It looks like a bag full of things that my kids might gather from the woods: tree bark and twigs and dried mushrooms. You put it in a glass or ceramic pot, cover it with water, and cook it down slowly for about 3 hours. It leaves a woodsy smell in the house, which I don't mind, and I don't even mind the taste. The most difficult part is that I need to drink it at night, three hours after eating anything, so I am no longer snacking after dinner.

I wasn't sure whether this was doing anything, but at some point I realized that, since I started drinking the tea, my chest pains disappeared! Yay! (Both this time and two years ago, after starting chemo, I had strong chest pains every night.)

I started acupuncture. Since my surgery, I couldn't get off my duff to make any appointments with any kind of complementary medicine, including the acupuncturist I love (Kiiko Matsumoto). So Marilyn booked an acupuncture appointment for me with her acupuncturist (Marisa of Newton Center Acupuncture), then picked me up in her car and drove me there.

After the first appointment, I wasn't sure that anything shifted. But within an hour, I told someone to buzz off (in stronger language), which was really unlike me, and really freeing! Hmmmm. I ended up going back to Marisa (again, mostly out of laziness), and that time, within an hour afterwards (warning: possible oversharing!), food starting moving really quickly through my system. It was really wild. I do want to return to my own acupuncturist, but I have to say that I will first return to Marisa, mostly out of curiosity. I want to see what might happen next!

I have a couple other complementary medicine avenues I am doing as well, and lots of aromatherapy.

I ran into old friends, everywhere, and learned of some really cool connections among friends. All week, I kept running into people I've thought about but haven't seen in years. After a few days of this, it started to feel like that old show "This is Your Life." What a wild ride. I really loved seeing everyone!

I look pretty normal. Well, as normal as I look. For those of you who live outside Boston, I look pretty much the same as I always do. That helps!

The only downer -- and I'm not complaining! -- was that I have this sore throat that I can't seem to shake. I am one of those people who never gets sick (if you don't count cancer - ha ha) so I have a new appreciation for what everyone else goes through when they get a cold. For those of you who get colds, my apologizes if I haven't been as sympathetic to you as you needed! I had no idea you were that uncomfortable!

Our six-year-old son asked this week why we aren't making dinner for our friends, because they are making dinners for us. (By the way, the kids totally eat all their vegetables if someone else cooks them! Go figure.)

We all really appreciate all your help and support, and our son voiced the sentiment that I've struggled with recently: How to give back in some way? You are all carrying us, in so many ways, and it would be wonderful to share all that we receive back with you.

So I will leave you with one more high point from this week: Someone told me, "I live my life differently because of you." That touched me and I carry it with me.

I hope you are enjoying life sooo much -- there are so many cool things that are going on, and you are part of all of this uplifting energy.

Again, thank you for your prayers and good thoughts and for banding together to help us all. It truly makes a difference in so many ways for us, and I pray it is all coming back to you, and more!

Much love,

Wednesday, March 24, 2010

Making change (joke)

The Dalai Lama is visiting New York and decides to stop at a vegetarian hot dog stand. He says to the vendor, “Make me one with everything,” and hands him a $20 bill.

The vendor ignores the spiritual part of the request but prepares his feast on a bun, hands it to him and turns to the next customer.

His Holiness leans forward and asks for his change.

“Ah,” says the vendor, “change must come from within.”

Wednesday, March 17, 2010

Second round of chemo is better, plus doing Chinese teas

Chemo again yesterday. I need to drink more water, for sure, but otherwise, this week is better than my last treatment.

After the prayer service last week, it felt like I was magically transported from shaky ground, over a huge crevice in the earth, and then placed onto solid ground. It was a huge shift that you all made for me, so I know that helped make this better.

On Monday, I did a one-day trip to North Bennington, Vermont (3.5 hours each way in the pouring rain) to see this Vietnamese doctor. I wondered if I was crazy, desperate, doing a any case, off I went. I met with him, and by taking my pulse and looking at my tongue (I love the non-invasive approach of Chinese medicine!), he determined that my liver, spleen and heart were weak, and suggested that I cut back on the chemo if possible, to give them a chance to strengthen. I've been having lots of chest pains since I started chemo (and I had these when I did chemo two years ago), so it made sense to me. And he gave me a huge bag of Chinese teas for me to make (and drink) on my off-chemo weeks.

On Tuesday, I got to my appointment and, instead of seeing the doctor, I got her nurse. I had never worked with or even met or heard of her nurse before, not once in the three years I've been going there. And, one of the things that makes this bearable is having folks who know me and know my history. This change didn't feel good.

But, I was very wrong. She was great. I got to talk with her about all my yukky side effects from last time, she suggested a 20% lower dose of all the chemos. a new drug regimen for the days following my chemo to help with the nausea. I still hate taking pills, but she and others convinced me to give these a go.

When I got to the infusion room and saw my chemo nurse, she asked me how my appointment went. Apparently, they all discussed how I would handle seeing the nurse instead of the doctor, and weren't sure it would fly. I guess they know me well.

Chemo, other than the drugs, was like a little party -- thank you to everyone who was there!

Again, I wear the chemo pump for two days, and that in itself makes me feel yukky. Plus it has an odor about it. But I also recognize that alot of this is attitude and mine seems to be shifting a bit.

OH, then this morning, I was going to cranial sacral therapy at 10:00. At 9:30, my sorry butt was still in bed. Showering is a huge hassle with this pump hanging off my chest, but I didn't want anyone to do any kind of body work on me without showering! So, I was going to be late. I'll call her. Computer crashed, so can't look up her number. Ugh. Got to the car. Battery dead. I switched to Tiron's car, and finally got there with 10 minutes left in my appointment!

So, life is challenging, but the appointment was across the street from a chocolate store, and I got to get the kids their "Nut Free Easter bunnies" and other treats, so that is big plus. I am so conflicted about them eating sugar.....

Thank you for your support and caring. It's all coming right back to you.

Love, Marie

Sunday, March 14, 2010

The prayer service was power and life-altering

The prayer service last Sunday evening was beyond words. At first, I didn't want to write anything about it, because I didn't want to trap it in the realm of words (if that makes sense).

And after that, I realized that I don't really have the words to describe it. Moving, overwhelming, beautiful and full of hope are descriptions that come to mind, plus a whole host of other emotions that are so intertwined that I can't sort through them individually.

Thank you for creating that. For everyone who came from near and far, and for everyone who did their part from where they were: Thank you. I continue to be amazed at the power of this group.

One specific outcome (and there were many): During the service, I was praying for light leading to my next steps. After everyone left, and there were just a few of us hanging out, Jamie (a woman from the church who I hadn't previously met in person) asked me about my "story." So, I dove into that, trying to keep it brief and relatively interesting so that I didn't bore this new friend. She kept saying, "I want to introduce you to Liz. I don't know why -- I just feel like I need to introduce you." And Maria (who made this whole thing happen) kept saying, "Didn't you go to New York? Or isn't there something about D.C.?"

Turns out, Liz had the surgery that I want to have in D.C.! It isn't really done in Boston and the more I talk with my Boston doctors, the more I doubt my instincts to do it. It isn't like there are alot of folks who have had this particular surgery, either. But, Liz had it! It was like an answer to my prayers, and I got to meet Liz this week (who is doing wonderfully).

As I said, this is just one of so many outcomes. I want to hang onto that great feeling that I had after the service, and I somehow want to spread it around. I hope that all of you who participated in some way felt that, too, and can carry that with you.

Chemo on Tuesday.

Love, Marie

Wednesday, March 3, 2010

Prayer service invitation; chemo continues to be hard

Maria and Todd Giatrelis have generously set up a prayer service at St. Joseph's Parish in Belmont for this Sunday evening, March 7, at 6:00. It will immediately follow the 5 pm. Mass.

This prayer service includes gospel readings, music and a special blessing -- the Sacrament of the Sick. Yes, this is the exact thing that I had been running from, but I'm learning that, no matter how fast you run, sometimes, things catch you!

If you are able to join us, St. Joseph's is at
354 Waverly Street
Belmont, MA 02478

It is not far from Belmont Center, and you can park in the lot or on the street. You may dress any way that feels comfortable to you (blue jeans are fine). Kids are welcome; this is a family-friendly church. My kids won't be there, though.

If you cannot join us, please feel free to pray wherever you are.

Thank you.

This chemo has been especially hard for me. It is only week one, and I didn't even get all the drugs this time, and I am still sick from it. I don't know how I would do the full dose, because right now, it feels like I am living only to do chemo and unable to do anything else. Not only am I physically ill from this, I've caught a cold (which I never do), and a piece of my skin literally ripped open.

I am seriously considering quitting it; my oncologist suggested a one-week hiatus and then checking in again. Kudos to all of you who have gone through this!!!


P.S. RSVP not required for the prayer service but nice to know if you are coming. And while it starts at six, feel free to arrive when it fits your schedule. I expect it will last 30 - 45 minutes?