I got the wonderful news that my most recent CEA is 2.1. Below 2.5 is considered normal, so big sigh of relief here.
In the past, my CEA has been a reliable indicator of tumor growth. Each time it went up, there was a tumor growing in my body. Thankfully, the number has been getting smaller each time we test. And while this is a relief, I alternately hold tightly to this good news, even though it is like holding onto sand, or I project myself into the future and worry about whether it will stay low. When I feel like my best self, I do try my best to stay in this moment and enjoy it for what it is.
The past couple of weeks have been fantastic. We enjoyed fabulous weather (even the three days of torrential downpour), a boatload of interesting activities (kids went flying, swimming, sailing and fishing, and I even made JAM for the first time ever), and warm, fun visits with friends both at home and away.
After a wonderful two weeks, it felt strange to walk into the infusion room. No matter how normal I feel, this place makes me revert to being a patient. It helps that I have a tendency to get to know the staff, but, despite the friendly conversation, there are constant reminders that I'm the patient and they are treating me. They are the ones who take my blood pressure and oxygen levels. They have the liberty of commenting on my weight. They lead me to the chair where I will sit for a few hours (sometimes in a private room, sometimes not) and hand a blanket to me. The nurse sticks a needle into the port my chest to draw blood, making sure that my white count, red count, platelets, etc are strong enough for me to have chemo this week. The doctor talks with me to find out about the things going into my body (eating okay?) and coming out (vomiting, constipation or diarrhea this week?).
Even after the nurse leaves my little infusion area, I inadvertently listen to the conversations from the other rooms: How much nausea are you having? Are you taking Emend? Decadron? What are you eating?
When I am outside of Mass General, I feel great. Inside here, I am reminded that not everyone expects me to have good blood pressure and oxygen levels, a healthy and stable weight, and good blood counts. The fact that I haven't thrown up or had digestive problems is considered to be good news. But, it is also a reminder that these things are expected. I tend to try and live up to expectations, so I need to fight that tendency here.
Though I sound like all this is happening "to" me, I admit that I participate in it. For example, I subscribe to a number of health newsletters and news updates specifically related to cancer and colorectal cancer. The emails provide random reminders that I am in that world, too.
The articles in the emails are informative and sometimes relevant. A recent update referred to a study revealing that, in people under 40 years old, rectal cancer has been on the rise since 1985.
I don't fit the description of the typical colorectal cancer patient: older male who eats red meat. As I meet more people who don't fit the mold, I keep developing theories of other risk factors. The scientific side of my brain knows that we ignore data that lies outside our theories, or we treat that data as an exception. I want to scream, "Update your list of risk factors to include these outliers!" But it takes alot of exceptions to get our attention, so few studies are done on those outliers, like me. Or maybe I am simply just looking for an affinity group.
Regardless, I read this report with fascination. I talked with my husband and my doctor about the study, excited that someone noticed a pattern outside the standard assumptions. I felt a certain connection with this group and was happy to feel noticed in this way. Then I realized, I'm not actually under 40!
So here I sit, in my over-40 body that feels great when I keep my mental gymnastics out of the mix, waiting for my chemo cocktail. Thank you for all your prayers and good wishes. I know that each of you has your own particular challenges, either personally or with someone you love, and I really appreciate that you share your positive focus on my treatments as well. It makes more of a difference than I can describe. If you think of it (or even, right now!) send some quick good wishes for a good chemo session and chemo week. And I'm sending those right back at you!
Love,
Marie
Tuesday, August 31, 2010
Tuesday, August 17, 2010
Good news from MRI: New spot in liver is not cancerous
More good news....I had an MRI the other week to check out the new spot on my liver, and everything is fine.
So, we went on vacation. It was awesome. This was a secret to me: Provincetown is incredibly kid- and dog-friendly! So the kids had fun, the dog is finally relaxing a bit (Kenobi is very connected to me and to the kids, but typically shies away from anyone else), and we got to see friends in Ptown, in Truro and on Nantucket. A fantastic break from the norm, and my last chemo session feels like ages ago. I love that!
I remain so grateful for your support, as well as for the stories you share about others who have walked this road in various ways and healed.
A few weeks ago, Julian (newly 4) and I joined some friends at a swimming pool. Julian swam in the shallower end, Young Mr. R (our friends' son, who is 8) swam in the deep end, and I got to visit with my friends. After a bit, Julian got out of the pool, wrapped himself in a towel, and rested on a chair.
Soon, Young Mr. R called from the diving board, so we could see his dive. And a fine dive it was!
Julian is a good swimmer. He has been swimming since he was quite small, and is used to people making a fuss over what a good swimmer he is. So, he generally feels like a big fish and that there isn't alot of swimming left to learn.
But the diving board! It was the first time he's seen a diving board, as well as someone dive off it. A whole new world of swimming opened up to him, and he ran with excitement toward the board to try the same thing.
That is how I feel. I think that I am doing well, but then, I see or learn about someone else doing better, or someone who once was doing chemo and now lives a normal life, or someone who had a medical condition that invaded their lives and now doesn't need the hospital staff....that opens my eyes to new possibilities, higher paths, and the fact that these are even possible.
I am grateful for your stories, not just about health, but in every realm, because they help me (and I'm sure others) learn and grow and expand my world.
And again, thank you for your good wishes for chemo this week!
Love,
Marie
So, we went on vacation. It was awesome. This was a secret to me: Provincetown is incredibly kid- and dog-friendly! So the kids had fun, the dog is finally relaxing a bit (Kenobi is very connected to me and to the kids, but typically shies away from anyone else), and we got to see friends in Ptown, in Truro and on Nantucket. A fantastic break from the norm, and my last chemo session feels like ages ago. I love that!
I remain so grateful for your support, as well as for the stories you share about others who have walked this road in various ways and healed.
A few weeks ago, Julian (newly 4) and I joined some friends at a swimming pool. Julian swam in the shallower end, Young Mr. R (our friends' son, who is 8) swam in the deep end, and I got to visit with my friends. After a bit, Julian got out of the pool, wrapped himself in a towel, and rested on a chair.
Soon, Young Mr. R called from the diving board, so we could see his dive. And a fine dive it was!
Julian is a good swimmer. He has been swimming since he was quite small, and is used to people making a fuss over what a good swimmer he is. So, he generally feels like a big fish and that there isn't alot of swimming left to learn.
But the diving board! It was the first time he's seen a diving board, as well as someone dive off it. A whole new world of swimming opened up to him, and he ran with excitement toward the board to try the same thing.
That is how I feel. I think that I am doing well, but then, I see or learn about someone else doing better, or someone who once was doing chemo and now lives a normal life, or someone who had a medical condition that invaded their lives and now doesn't need the hospital staff....that opens my eyes to new possibilities, higher paths, and the fact that these are even possible.
I am grateful for your stories, not just about health, but in every realm, because they help me (and I'm sure others) learn and grow and expand my world.
And again, thank you for your good wishes for chemo this week!
Love,
Marie
Tuesday, August 3, 2010
CEA results are in, and the news is good!
I am writing this from the infusion room, hooked to chemo, so pardon any fuzziness....
I got some great news -- My CEA level is 3.2! Or, maybe it is 3.1. I don't remember exactly, but I do remember that it is below 3.5, which was my previous low number. I saw that about two years ago, and haven't seen it since. So, this is truly cause for joy!
Of course, I can't just revel in the good news; I have to find the angst somewhere. And right now, it lies in two places:
First of all, 2.5 and below are considered to be normal. While the rest of my bloods are great compared to the average person walking down the street, I know that I need to get this tumor marker as low as possible.
Second, and even bigger: As I begin to enter any scary phase of my life, I am more reliant on my faith and acknowledge my dependence on God and elements greater than myself In fact, I usually just hand the whole thing over, saying, "I know I've made a total mess of this. Can you fix it? I promise I'll do ANYTHING!"
When my life starts to feel more "under control," I tend to think it is under MY control, and then become more lax in my faith and practices. That shift bothers me. This falls into the same bucket as, when something heartbreaking happens to me, I have huge compassion for everyone, but when things are going well for me, I am a bit more judgmental of others.
Lately, I work to stay aware of this, and try various approaches to live more consistently with faith and compassion. Given that I know how hard it is to maintain these, I am especially thankful for yours on my behalf, and very impressed that you keep it going. I know that my quality of life and relatively good health stems from that.
Also, so many of you, of us, of those we love, have been through and are going through all kinds of heartbreak, pain, diagnoses, treatments. Please know that I pray for you, and if there is something specific I should focus on, let me know. Truly.
Last week, the homily at church really touched me, and I'll share one aspect with you. "Jesus came to form a community of faith, not individuals of faith."
Regardless of your religious beliefs, I sincerely appreciate your being part of my community. It is powerful. Thank you.
Love, Marie
I got some great news -- My CEA level is 3.2! Or, maybe it is 3.1. I don't remember exactly, but I do remember that it is below 3.5, which was my previous low number. I saw that about two years ago, and haven't seen it since. So, this is truly cause for joy!
Of course, I can't just revel in the good news; I have to find the angst somewhere. And right now, it lies in two places:
First of all, 2.5 and below are considered to be normal. While the rest of my bloods are great compared to the average person walking down the street, I know that I need to get this tumor marker as low as possible.
Second, and even bigger: As I begin to enter any scary phase of my life, I am more reliant on my faith and acknowledge my dependence on God and elements greater than myself In fact, I usually just hand the whole thing over, saying, "I know I've made a total mess of this. Can you fix it? I promise I'll do ANYTHING!"
When my life starts to feel more "under control," I tend to think it is under MY control, and then become more lax in my faith and practices. That shift bothers me. This falls into the same bucket as, when something heartbreaking happens to me, I have huge compassion for everyone, but when things are going well for me, I am a bit more judgmental of others.
Lately, I work to stay aware of this, and try various approaches to live more consistently with faith and compassion. Given that I know how hard it is to maintain these, I am especially thankful for yours on my behalf, and very impressed that you keep it going. I know that my quality of life and relatively good health stems from that.
Also, so many of you, of us, of those we love, have been through and are going through all kinds of heartbreak, pain, diagnoses, treatments. Please know that I pray for you, and if there is something specific I should focus on, let me know. Truly.
Last week, the homily at church really touched me, and I'll share one aspect with you. "Jesus came to form a community of faith, not individuals of faith."
Regardless of your religious beliefs, I sincerely appreciate your being part of my community. It is powerful. Thank you.
Love, Marie
Tuesday, July 20, 2010
Even in Routines, Changes Abound
Thank you for hanging in there with me. This road is starting to feel long, though I'm not complaining about that! Just realizing that, if it feels long to me, I suspect that it may feel long to you as well. Please know that I deeply appreciate your being along for the ride, keeping me and my family in your prayers, and doing so much for us.
Friends have asked about the status of the HIPAC (hot chemo) surgery that I was considering. This is a huge surgery, and since things are going relatively well, it is hard for me to jump into it. But, it is still on the table. I need to get a liver MRI first (to check out the spot on my liver, though the PET CT seems to show it is okay). So the HIPAC is on hold for now, and I don't need to make an immediate decision about it.
My two-week cycles are starting to feel routine, but there are definitely changes. One big change (on the chemo front) is that my usual nurse had a baby, so I got a new nurse. Though I knew that this was coming, I still burst into tears...then moved ahead.
The big, positive change is that I had absolutely no stomach pain this past cycle. Yay! I know that more than a few of you were helping to pray for that. THANK YOU! It was like I got an extra day of life.
We had alot of changes in our household, too. Aidan turned seven, and Julian turned four (on the same day -- I like to say "Thank Heaven for 7-11"). I was initially diagnosed with this when Aidan just turned four and Julian one, and I sometimes wondered if I would see Julian turn four. That alone was worth celebrating.
The day before the boys' birthday, we made a trek to Cambridge, VT to pick up our dog! I'm not a dog person or even an animal person. And I like things to be clean. No one could be more surprised than I was about my sudden deep desire for a dog.
After my diagnosis in February, I felt the boys should have a pet. A cat was out of the question (due to allergies) and I immediately ruled out a dog because it would have to live inside. We considered rabbits, since they could live on the screened porch and outside, then decided it wasn't a good fit. We tried to get chickens, but the coyotes got to them before they reached our house. Then I met a friend's dog, and suddenly my view and emotions changed, and I got a laser focus on that.
Kenobi (named after Obi Wan from Star Wars) is a 7-month-old cockapoo. He arrived housetrained, relatively calm (though scared out of his wits), and willing to do what I ask him to do. That alone is a refreshing change for me. Plus, he seems to be smart, which I appreciate, and adores me, so who can resist that? The boys are thrilled with him. Tiron is graciously adapting.
Another big change is my mother's cooking. My parents have been generously traveling from Pittsburgh, PA to Cambridge, MA for one week every month, which basically amounts to every other chemo session. They are gifted at keeping the house running, and my very Italian mother is a fantastic Italian cook. Growing up, we always ate all Italian. I didn't see a bagel or Chinese food until college.
But she jumped into preparing raw foods, and now routinely spouts beans, makes raw hummus, and uses the dehydrator to craft incredible crackers. She starts with my recipes, then enhances them to make these amazing creations that I can't replicate. She even juices wheatgrass and greens. I admit that I am impressed. She still makes meatballs, sausage and ribs for everyone else. The meat dishes aren't tempting to me, the spaghetti is, and I like that the combination makes our house smell like my memories of growing up.
I hope that your summer is going well, with lots of beautiful moments, big and small, and that you are riding the waves of change as they happen. I also hope that you can feel the adoration that surrounds you, starting with adoration from me.
I have chemo again this Tuesday (July 20), and really do appreciate any prayers, positive actions, even smiles on our behalf.
Love,
Marie
Friends have asked about the status of the HIPAC (hot chemo) surgery that I was considering. This is a huge surgery, and since things are going relatively well, it is hard for me to jump into it. But, it is still on the table. I need to get a liver MRI first (to check out the spot on my liver, though the PET CT seems to show it is okay). So the HIPAC is on hold for now, and I don't need to make an immediate decision about it.
My two-week cycles are starting to feel routine, but there are definitely changes. One big change (on the chemo front) is that my usual nurse had a baby, so I got a new nurse. Though I knew that this was coming, I still burst into tears...then moved ahead.
The big, positive change is that I had absolutely no stomach pain this past cycle. Yay! I know that more than a few of you were helping to pray for that. THANK YOU! It was like I got an extra day of life.
We had alot of changes in our household, too. Aidan turned seven, and Julian turned four (on the same day -- I like to say "Thank Heaven for 7-11"). I was initially diagnosed with this when Aidan just turned four and Julian one, and I sometimes wondered if I would see Julian turn four. That alone was worth celebrating.
The day before the boys' birthday, we made a trek to Cambridge, VT to pick up our dog! I'm not a dog person or even an animal person. And I like things to be clean. No one could be more surprised than I was about my sudden deep desire for a dog.
After my diagnosis in February, I felt the boys should have a pet. A cat was out of the question (due to allergies) and I immediately ruled out a dog because it would have to live inside. We considered rabbits, since they could live on the screened porch and outside, then decided it wasn't a good fit. We tried to get chickens, but the coyotes got to them before they reached our house. Then I met a friend's dog, and suddenly my view and emotions changed, and I got a laser focus on that.
Kenobi (named after Obi Wan from Star Wars) is a 7-month-old cockapoo. He arrived housetrained, relatively calm (though scared out of his wits), and willing to do what I ask him to do. That alone is a refreshing change for me. Plus, he seems to be smart, which I appreciate, and adores me, so who can resist that? The boys are thrilled with him. Tiron is graciously adapting.
Another big change is my mother's cooking. My parents have been generously traveling from Pittsburgh, PA to Cambridge, MA for one week every month, which basically amounts to every other chemo session. They are gifted at keeping the house running, and my very Italian mother is a fantastic Italian cook. Growing up, we always ate all Italian. I didn't see a bagel or Chinese food until college.
But she jumped into preparing raw foods, and now routinely spouts beans, makes raw hummus, and uses the dehydrator to craft incredible crackers. She starts with my recipes, then enhances them to make these amazing creations that I can't replicate. She even juices wheatgrass and greens. I admit that I am impressed. She still makes meatballs, sausage and ribs for everyone else. The meat dishes aren't tempting to me, the spaghetti is, and I like that the combination makes our house smell like my memories of growing up.
I hope that your summer is going well, with lots of beautiful moments, big and small, and that you are riding the waves of change as they happen. I also hope that you can feel the adoration that surrounds you, starting with adoration from me.
I have chemo again this Tuesday (July 20), and really do appreciate any prayers, positive actions, even smiles on our behalf.
Love,
Marie
Monday, July 19, 2010
An Encounter in the Waiting Room
I continue on the raw food diet. I'm not perfect at it, but I do stick to it most of the time. I try not to be obnoxious about it, though I may have crossed a line last week.
I sat in the waiting room near a family of four. The father was in his late 50's or early 60's. He was joking about waiting so long to see the doctor that they probably had pajamas waiting for him. I looked up and laughed.
From there, the parents and I started chatting about the things most chemo patients share. He looked good to me, but shared that he lost 40 pounds so far. His wife told me that she was 59; I could feel her positive energy, as well as her disbelief that they were even here. His daughter and son, in their late teens or early 20's, sat next in the line of chairs, each occupied by a book or their iPhones while they listened to our conversation.
We chatted about the length of the appointments, the fact that chemo wasn't working for him, how we both hate the IV fluids they give for dehydration. She was more factual, though cheery. He tried to make light of it all.
At one point, the snack cart came around, filled with items that I used to think were totally yummy: roasted peanuts, Lorna Doones, potato chips, apple juice, V-8...I declined. The family members each took a few treats. They advised me, in a friendly way, that I should take what I liked and save it for later.
"Like we just said, you don't know how long you'll need to wait here."
In response, I blurted out, "I'm not doing sugar right now."
They all stopped; even the kids looked directly at me. They all had hope in their eyes that broke my heart. I recognized that feeling; I do it myself, looking for a "cure" that might be out there, something I don't yet know or haven't heard about, a lifeline.
After what felt like a long silence but was probably only a moment, the wife softly asked, "Did the doctor advise that?"
I wanted to reassure them. Even more than that, I wanted that look in their eyes to go away. Plus, what do I really know. I am trying everything I can do that feels right to me, but maybe it isn't right for everyone.
"No, this is something I'm doing on my own." It is true, but even as I said it, I wondered, should I share more information? Is this something that could help him?
Then the father joked, "Sugar will make you even sweeter."
Again, something I recognized. The patient telling a joke to make everyone else feel better.
It broke the mood and we chatted lightly again until we were all called back into our doctors' offices.
As I was leaving my appointment, I caught a glimpse of them in their doctor's room. Their mood was no longer light, there were no smiles, and I said a silent prayer for them as I walked away.
I sat in the waiting room near a family of four. The father was in his late 50's or early 60's. He was joking about waiting so long to see the doctor that they probably had pajamas waiting for him. I looked up and laughed.
From there, the parents and I started chatting about the things most chemo patients share. He looked good to me, but shared that he lost 40 pounds so far. His wife told me that she was 59; I could feel her positive energy, as well as her disbelief that they were even here. His daughter and son, in their late teens or early 20's, sat next in the line of chairs, each occupied by a book or their iPhones while they listened to our conversation.
We chatted about the length of the appointments, the fact that chemo wasn't working for him, how we both hate the IV fluids they give for dehydration. She was more factual, though cheery. He tried to make light of it all.
At one point, the snack cart came around, filled with items that I used to think were totally yummy: roasted peanuts, Lorna Doones, potato chips, apple juice, V-8...I declined. The family members each took a few treats. They advised me, in a friendly way, that I should take what I liked and save it for later.
"Like we just said, you don't know how long you'll need to wait here."
In response, I blurted out, "I'm not doing sugar right now."
They all stopped; even the kids looked directly at me. They all had hope in their eyes that broke my heart. I recognized that feeling; I do it myself, looking for a "cure" that might be out there, something I don't yet know or haven't heard about, a lifeline.
After what felt like a long silence but was probably only a moment, the wife softly asked, "Did the doctor advise that?"
I wanted to reassure them. Even more than that, I wanted that look in their eyes to go away. Plus, what do I really know. I am trying everything I can do that feels right to me, but maybe it isn't right for everyone.
"No, this is something I'm doing on my own." It is true, but even as I said it, I wondered, should I share more information? Is this something that could help him?
Then the father joked, "Sugar will make you even sweeter."
Again, something I recognized. The patient telling a joke to make everyone else feel better.
It broke the mood and we chatted lightly again until we were all called back into our doctors' offices.
As I was leaving my appointment, I caught a glimpse of them in their doctor's room. Their mood was no longer light, there were no smiles, and I said a silent prayer for them as I walked away.
Tuesday, July 6, 2010
Chemo status quo; Friendships and Memories
This has been a really great two weeks. My last chemo (two weeks ago) went, well, as chemo goes. Overall pretty smoothly.
My hair has thinned so my head gets cold, One of the women who works there is Muslim, and she taught me how to tie a headscarf. And when I went to MGH for my injection on Friday (I get an injection to help increase my white cell count), the nurse did an amazing Reiki healing. So the staff continues to be really supportive.
I got those awful stomach cramps again this week, but I was able to manage them with meditation. It was pretty amazing. I isolated myself from everyone else and concentrated only on my breathing. At one point, I found that I could separate myself from the pain, and, in that calm, I started to notice things. For example, I started to notice the feelings that would happen immediately after the pain would subside, which I never noticed before. And I noticed that the pain moved, slowly, along the path of my intestines. Yes, I was still out of commission for a few hours, but it was way more manageable than It had been in the past. I would love to be able to replicate this with any other pain -- it was pretty cool.
Other that that, it's been an amazing two weeks. Lots of celebrations and visits with dear friends. I feel so lucky to be able to do that, and to share these experiences together.
Because of that, I started to think about our lifetime of experiences with so many different people, and the subsequent stories we all have about each other. At the risk of letting you know how goofy I was at the age of 12, I share this email from a sixth-grade classmate. He and I haven't been in touch in YEARS, and I haven't thought about this event, oh, probably since it happened, but it was a memory that came right back to him:
-----
We're on a holiday road trip, and I heard a song on the radio that brought back a memory... Remember the song "Billy Don't be a Hero"? Well, I recall that in sixth grade we had to pick a song and make drawings that told the story of the song, then stand in front of the class and flash our drawings cue-card style while the song played. You...chose "Billy Don't be a Hero" and every time the word "Hero" came up, you had a drawing of a sub sandwich, very well drawn with a colored pencil. I don't even remember what song I chose...
-----
If someone asked about sixth grade, I don't think I would have recalled either the assignment or the song on my own. But, through this shared experience, he obviously holds a story of my life and a piece that is truly me from that time. I was really touched by this and suddenly started to notice it everywhere.
I was honored to witness this at a party this weekend, where the host couple had friends from all stages of their lives. I got to watch my three-year-old son at parties with his friends from school, where their comfortable and fluid interactions show how deeply they already know each other. And I marveled as my friend from third grade, who recently returned home after a one-month visit (along with her husband and two daughters - how amazing is that!), randomly recalled shared experiences that are like gold.
I'm grateful for all these friendships and the memories those friends hold, events that I either don't recall or that reside in the dark, dusty corners of my mind and heart. Those are places I don't typically explore without a professional. It's way more fun with a friend.
Thank you for all the memories you hold, even as you might recall one right now! And I hope that, soon or during this summer, you can spontaneously go to some dark dusty spot in your heart with a friend, find a treasure and smile, and barrel ahead to create new memories!
Thank you for all the prayers and good wishes, and keep them coming!
Love to you,
Marie
My hair has thinned so my head gets cold, One of the women who works there is Muslim, and she taught me how to tie a headscarf. And when I went to MGH for my injection on Friday (I get an injection to help increase my white cell count), the nurse did an amazing Reiki healing. So the staff continues to be really supportive.
I got those awful stomach cramps again this week, but I was able to manage them with meditation. It was pretty amazing. I isolated myself from everyone else and concentrated only on my breathing. At one point, I found that I could separate myself from the pain, and, in that calm, I started to notice things. For example, I started to notice the feelings that would happen immediately after the pain would subside, which I never noticed before. And I noticed that the pain moved, slowly, along the path of my intestines. Yes, I was still out of commission for a few hours, but it was way more manageable than It had been in the past. I would love to be able to replicate this with any other pain -- it was pretty cool.
Other that that, it's been an amazing two weeks. Lots of celebrations and visits with dear friends. I feel so lucky to be able to do that, and to share these experiences together.
Because of that, I started to think about our lifetime of experiences with so many different people, and the subsequent stories we all have about each other. At the risk of letting you know how goofy I was at the age of 12, I share this email from a sixth-grade classmate. He and I haven't been in touch in YEARS, and I haven't thought about this event, oh, probably since it happened, but it was a memory that came right back to him:
-----
We're on a holiday road trip, and I heard a song on the radio that brought back a memory... Remember the song "Billy Don't be a Hero"? Well, I recall that in sixth grade we had to pick a song and make drawings that told the story of the song, then stand in front of the class and flash our drawings cue-card style while the song played. You...chose "Billy Don't be a Hero" and every time the word "Hero" came up, you had a drawing of a sub sandwich, very well drawn with a colored pencil. I don't even remember what song I chose...
-----
If someone asked about sixth grade, I don't think I would have recalled either the assignment or the song on my own. But, through this shared experience, he obviously holds a story of my life and a piece that is truly me from that time. I was really touched by this and suddenly started to notice it everywhere.
I was honored to witness this at a party this weekend, where the host couple had friends from all stages of their lives. I got to watch my three-year-old son at parties with his friends from school, where their comfortable and fluid interactions show how deeply they already know each other. And I marveled as my friend from third grade, who recently returned home after a one-month visit (along with her husband and two daughters - how amazing is that!), randomly recalled shared experiences that are like gold.
I'm grateful for all these friendships and the memories those friends hold, events that I either don't recall or that reside in the dark, dusty corners of my mind and heart. Those are places I don't typically explore without a professional. It's way more fun with a friend.
Thank you for all the memories you hold, even as you might recall one right now! And I hope that, soon or during this summer, you can spontaneously go to some dark dusty spot in your heart with a friend, find a treasure and smile, and barrel ahead to create new memories!
Thank you for all the prayers and good wishes, and keep them coming!
Love to you,
Marie
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, too...like 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.
Busted.
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,
Marie
P.S. Chemo tomorrow. Thank you for any prayers and good thoughts, both for a good chemo week as well as good results!
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, too...like 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.
Busted.
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,
Marie
P.S. Chemo tomorrow. Thank you for any prayers and good thoughts, both for a good chemo week as well as good results!
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