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.
Monday, July 19, 2010
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!
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,
Marie
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,
Marie
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
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
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.
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
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
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