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
Wednesday, June 9, 2010
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
Tuesday, April 27, 2010
Blood counts dramatically improve after 1 week at Hippocrates!
This week, I'm writing while I am getting chemo. I always feel a little drugged, due more to the anti-nausea meds. I guess that is not surprising, but this message may not sound completely like me.
Thank you for reading the piece on the CommonHealth blog. Your on-blog comments were really helpful for Rachel and Annie, and all your notes (both on and off the blog) were so wonderful and uplifting to me, which was such a nice bonus. Even if you didn’t comment, thank you for getting the good energy out there!
Even bigger (to me), I want and need to thank you for your prayers for a good chemo week. I must be starting to sound like a holy roller (no offense to any holy rollers) but honestly, I cannot believe the difference your prayers make in my little life. If it is possible to have a good chemo week, I had one last time around. I felt fine during chemo, and still felt okay leaving the infusion room, I had minimal nausea all week, and was even able to fly to Florida on Saturday. So if you think of it, say a little prayer right now for this to be a good chemo week, too! Aidan is in a play this week, and I would really love to go and see it and feel good enough to focus on him.
I was lucky enough to spend last week at the Hippocrates Health Institute in West Palm Beach. Tiron and the boys flew down with me, and had their own beach vacation while I was there.
Hippocrates focuses on providing information and services so that you can heal yourself. My personal focus was on learning more about the raw food diet, juicing, and food combining. I learned that this place is like a mecca for people from all over the world who want to heal. It felt almost biblical, with people from all walks of life arriving with all sorts of health challenges. A few were there to simply detox or to kick-start a healthier lifestyle. But so many were there to learn what they needed to heal themselves.
In some cases, there was an obvious sign: someone in a wheelchair or using a walker, or blind, or bald in that way that only chemo can do. But most folks were indistinguishable from the general population. It made me wonder, again, how many people I impatiently run into who look "normal" but are dealing with pain or disease, and who are doing the best they can.
The grounds are about 35 acres of greenery, with benches and hammocks, statues, etc. placed here and there, lots of waterfalls, really beautiful and relaxing. No traffic noise at all. Everyone, from the directors to the housekeepers, has such a positive attitude without feeling like cheerleaders. They all speak in terms of “health challenges” rather than your diagnosis or prognosis, and everyone, without exception, operates from the assumption that you can and will heal. That kind of energy is uplifting to your soul.
I'll admit that the menu was a bit challenging. The focus is 100% raw foods. Not only does that mean “salad bar” for lunch and dinner, it is THE SAME salad bar: leafy greens, more sprouts than I’ve even seen in my life, cucumbers, onions, sun-dried olives, crispy dulse (sea vegetable). There were one or two new side dishes (again, raw) at each meal. AND, breakfast is cucumber juice. I don’t each much but I initially assumed I would starve. And, indeed, for the first few days, I carried a bag of nuts and crackers with me, and munched on those between meals.
After about three days, I started to feel incredible. I had lots of energy, and even stopped snacking between meals. The side dishes were becoming more and more interesting (raw pasta made from zucchini, marinated mushrooms) or maybe I was just so deprived that they looked good! In any case, the diet became fun, and the chef did a cooking course, too, If you can call it cooking?
There were lectures on topics like growing your own sprouts or how to handle questions at Thanksgiving when everyone else is eating turkey.
Though the workout room held equipment for all abilities, open 24 hours every day, and I had lots of free time, I STILL couldn't find the time to work out. Hmmm. Maybe it isn't my schedule. Maybe it is just me.
They also had four small swimming pools: a regular pool (no chlorine), a warm salt-water pool, a Jacuzzi (or maybe it was a hot tub) and a really cold pool. Oh, and an infrared sauna. Plus the usual spa treatments and a few “unique” spa treatments.
I would be remiss if I didn’t mention that, at Hippocrates, they focus both on what goes into your body and what goes OUT of your body. The all-inclusive package includes a colonic, where they clean your colon. And they recommend that you do enemas to stay clean. Followed by a wheatgrass implant. (Sorry if I spoiled your taste for wheatgrass.)
I traded my “included colonic” for an extra massage in a yurt, which was amazing.
All this said, who knows what works. But, happy news -- when I got the results of my blood tests, my white count is higher than it's ever been, and spectacular by any measure! My other bloods are also great (well, liver function isn't perfect, but it is within the "expected" range). They told me to keep doing whatever I am doing. Yay!
After all I learned last week, I continue to feel like any cure for me will come from something higher than myself, and I feel like, as a group, we can tap into that power and move that energy in a positive way. Thank you, from the bottom of my heart, for all you are doing to channel that energy into my healing and my quality of life.
Much love and light to you in your life today!
Love, Marie
Thank you for reading the piece on the CommonHealth blog. Your on-blog comments were really helpful for Rachel and Annie, and all your notes (both on and off the blog) were so wonderful and uplifting to me, which was such a nice bonus. Even if you didn’t comment, thank you for getting the good energy out there!
Even bigger (to me), I want and need to thank you for your prayers for a good chemo week. I must be starting to sound like a holy roller (no offense to any holy rollers) but honestly, I cannot believe the difference your prayers make in my little life. If it is possible to have a good chemo week, I had one last time around. I felt fine during chemo, and still felt okay leaving the infusion room, I had minimal nausea all week, and was even able to fly to Florida on Saturday. So if you think of it, say a little prayer right now for this to be a good chemo week, too! Aidan is in a play this week, and I would really love to go and see it and feel good enough to focus on him.
I was lucky enough to spend last week at the Hippocrates Health Institute in West Palm Beach. Tiron and the boys flew down with me, and had their own beach vacation while I was there.
Hippocrates focuses on providing information and services so that you can heal yourself. My personal focus was on learning more about the raw food diet, juicing, and food combining. I learned that this place is like a mecca for people from all over the world who want to heal. It felt almost biblical, with people from all walks of life arriving with all sorts of health challenges. A few were there to simply detox or to kick-start a healthier lifestyle. But so many were there to learn what they needed to heal themselves.
In some cases, there was an obvious sign: someone in a wheelchair or using a walker, or blind, or bald in that way that only chemo can do. But most folks were indistinguishable from the general population. It made me wonder, again, how many people I impatiently run into who look "normal" but are dealing with pain or disease, and who are doing the best they can.
The grounds are about 35 acres of greenery, with benches and hammocks, statues, etc. placed here and there, lots of waterfalls, really beautiful and relaxing. No traffic noise at all. Everyone, from the directors to the housekeepers, has such a positive attitude without feeling like cheerleaders. They all speak in terms of “health challenges” rather than your diagnosis or prognosis, and everyone, without exception, operates from the assumption that you can and will heal. That kind of energy is uplifting to your soul.
I'll admit that the menu was a bit challenging. The focus is 100% raw foods. Not only does that mean “salad bar” for lunch and dinner, it is THE SAME salad bar: leafy greens, more sprouts than I’ve even seen in my life, cucumbers, onions, sun-dried olives, crispy dulse (sea vegetable). There were one or two new side dishes (again, raw) at each meal. AND, breakfast is cucumber juice. I don’t each much but I initially assumed I would starve. And, indeed, for the first few days, I carried a bag of nuts and crackers with me, and munched on those between meals.
After about three days, I started to feel incredible. I had lots of energy, and even stopped snacking between meals. The side dishes were becoming more and more interesting (raw pasta made from zucchini, marinated mushrooms) or maybe I was just so deprived that they looked good! In any case, the diet became fun, and the chef did a cooking course, too, If you can call it cooking?
There were lectures on topics like growing your own sprouts or how to handle questions at Thanksgiving when everyone else is eating turkey.
Though the workout room held equipment for all abilities, open 24 hours every day, and I had lots of free time, I STILL couldn't find the time to work out. Hmmm. Maybe it isn't my schedule. Maybe it is just me.
They also had four small swimming pools: a regular pool (no chlorine), a warm salt-water pool, a Jacuzzi (or maybe it was a hot tub) and a really cold pool. Oh, and an infrared sauna. Plus the usual spa treatments and a few “unique” spa treatments.
I would be remiss if I didn’t mention that, at Hippocrates, they focus both on what goes into your body and what goes OUT of your body. The all-inclusive package includes a colonic, where they clean your colon. And they recommend that you do enemas to stay clean. Followed by a wheatgrass implant. (Sorry if I spoiled your taste for wheatgrass.)
I traded my “included colonic” for an extra massage in a yurt, which was amazing.
All this said, who knows what works. But, happy news -- when I got the results of my blood tests, my white count is higher than it's ever been, and spectacular by any measure! My other bloods are also great (well, liver function isn't perfect, but it is within the "expected" range). They told me to keep doing whatever I am doing. Yay!
After all I learned last week, I continue to feel like any cure for me will come from something higher than myself, and I feel like, as a group, we can tap into that power and move that energy in a positive way. Thank you, from the bottom of my heart, for all you are doing to channel that energy into my healing and my quality of life.
Much love and light to you in your life today!
Love, Marie
Tuesday, April 13, 2010
Article and audio on WBUR health blog
I just learned this and had to share it!
My friend, Rachel Zimmerman, is a journalist and runs the WBUR Health Blog. She asked me to write something about my experience going through chemotherapy.
If you are interested, here is a link to the article and an accompanying audio, which was done by our friend, Annie Brewster. Annie is a physician at MGH and doing studies of people going through various challenging life situations.
Please leave comments about either; they are really helpful. If you are shy, I don't think you need to use your real name.
http://commonhealth.wbur.org/guest-contributors/2010/04/a-mother-savors-life-while-battling-cancer/
I haven't yet figured out how to do the automatic link on this page, so you'll need to cut and paste to see it.
I hope you are having a wonderful day!
Love, Marie
P.S. I'm writing from the chemo infusion room. A friend, who came to visit today and had chemo a few years ago, commented that this is a nice place, so I see it through some new eyes now. Still, everything is relative. I'm thankful for the awesome view of Boston I got today. (Not to complain, but Bali would be nicer.)
My friend, Rachel Zimmerman, is a journalist and runs the WBUR Health Blog. She asked me to write something about my experience going through chemotherapy.
If you are interested, here is a link to the article and an accompanying audio, which was done by our friend, Annie Brewster. Annie is a physician at MGH and doing studies of people going through various challenging life situations.
Please leave comments about either; they are really helpful. If you are shy, I don't think you need to use your real name.
http://commonhealth.wbur.org/guest-contributors/2010/04/a-mother-savors-life-while-battling-cancer/
I haven't yet figured out how to do the automatic link on this page, so you'll need to cut and paste to see it.
I hope you are having a wonderful day!
Love, Marie
P.S. I'm writing from the chemo infusion room. A friend, who came to visit today and had chemo a few years ago, commented that this is a nice place, so I see it through some new eyes now. Still, everything is relative. I'm thankful for the awesome view of Boston I got today. (Not to complain, but Bali would be nicer.)
Monday, April 12, 2010
Cardio week, St. Teresa, and life is good
I decided that sending an update before chemo, rather than afterwards, is more uplifting. Chemo is tomorrow, so here I am tonight.
Last time around (2 years ago), I was able to view chemo as an adventure. This time, it feels like old news, been there, done that, etc. As funny as chemo can be, it is way more fun to focus on other stuff.
However, hospital stuff seems to make up a portion of my life. Even on a non-chemo week, I was at the hospital on Monday, Wednesday and Friday. If I didn't spend so much time at the hospital, I might actually be able to exercise and be healthier.
I'll back up a bit. On my chemo day, my oncologist normally asks how I did with the last treatment so that she can adjust the prescription for that day. I ran through my side effects, all were as expected, and then excitedly told her: My chest pains totally disappeared after I started drinking Chinese tea.
As often as we've talked about my chest pains in the past, it never went beyond, "uh huh" until today. She stopped and said something like, "Let's skip the chemo pump this week. Sometimes that can cause a heart issue. I'll make an appointment with a cardiologist."
I was OVERJOYED to skip the pump, and amused that Western medicine will not be outdone by Traditional Chinese Medicine.
Still, nothing is free. And I feel a little like the hungry caterpillar in Eric Carle's children's book:
On Monday, I saw the breast cancer doctor (I'm almost five years out of that one -- keeping my fingers crossed!).
On Wednesday, I saw the cardiologist. Great guy. From Nashville (gotta love that) and supported the Chinese teas.
On Friday, I had an echo stress test on a bike (no IV needed. whew). The techs kept making me laugh, which really does lower your heart rate. I thought that was just one of those nice things people tell you to cheer you up. Meanwhile, the bike pedaling automatically gets harder and harder, trying to raise your heart rate to its max. It was an interesting competition, and I passed with flying colors. Yay! Love good news.
It truly felt like cardio week last week, though, as three other friends saw their cardiologist as well, all for different reasons. Thankfully, we are all up and walking around. That counts for alot.
The other "medical" event this week was wig shopping. I get varying answers from the docs on whether I will need this, but my hair is definitely thinning. Thankfully, I had alot to start with! Though it is easier to shop for wigs when you have hair rather than afterwards, I kept putting it off. A friend took the reins, researched my options for places, made the appointment, went with me, and made it all no big deal. THAT was cool, watching her take on a dragon in my life and extinguishing its fire.
Back to chemo day: It was time to add another chemo drug to the mix. I got to choose. One has "no noticeable side effects," whatever that means. The other causes "often disfiguring skin rashes." Hmmm. Which would you choose?
The other theme this week (besides cardio) was St. Teresa. St. Theresa of the Little Flower is a constant prayer for me lately; the writings of St. Teresa of Avila were a surprise focus of the Kripalu workshop I attended this weekend; our friend, Teresa, brought a chicken pot pie (okay, she isn't a saint but we felt pretty blessed by that) and another Teresa I've never even met gave me a beautiful prayer shawl. At this point, I feel like I have to add Aunt Theresa, who showed me that, no matter what the circumstances, you should always look and act your best self, and then maybe even have a little party!
Despite all the medical appointments, after the effects of chemo wore off, I was able to feel good and be active. The week was filled with wonderful moments, big and small. It's nice not to think about cancer all the time. I often think of Kris Carr (actress who lives with stage 4 cancer) who appeared on Oprah. When Oprah asked, "Do you spend every moment thinking about dying?" Kris responded with something like, "Heck no. Right now, I'm thinking, I AM ON OPRAH!!!"
Overall life is good. On top of that, I feel like people are opening their lives and their selves to me in a different way than before, so I am trying to pass that along and do that with others I meet. On my end, it feels like you are creating a state of grace that makes miracles possible. Thank you for being so generous of spirit. Not only does this have a huge impact on me and my family, I feel like this must be shifting and impacting our world in a positive way. If a butterfly flapping its wings can create weather patterns on the other side of the world, just imagine what all our bigger acts of kindness are doing!
If you are so inclined, do continue to send prayers that the chemo is killing those cancer cells, and that I find any other avenue I need to heal this.
Much love,
Marie
Last time around (2 years ago), I was able to view chemo as an adventure. This time, it feels like old news, been there, done that, etc. As funny as chemo can be, it is way more fun to focus on other stuff.
However, hospital stuff seems to make up a portion of my life. Even on a non-chemo week, I was at the hospital on Monday, Wednesday and Friday. If I didn't spend so much time at the hospital, I might actually be able to exercise and be healthier.
I'll back up a bit. On my chemo day, my oncologist normally asks how I did with the last treatment so that she can adjust the prescription for that day. I ran through my side effects, all were as expected, and then excitedly told her: My chest pains totally disappeared after I started drinking Chinese tea.
As often as we've talked about my chest pains in the past, it never went beyond, "uh huh" until today. She stopped and said something like, "Let's skip the chemo pump this week. Sometimes that can cause a heart issue. I'll make an appointment with a cardiologist."
I was OVERJOYED to skip the pump, and amused that Western medicine will not be outdone by Traditional Chinese Medicine.
Still, nothing is free. And I feel a little like the hungry caterpillar in Eric Carle's children's book:
On Monday, I saw the breast cancer doctor (I'm almost five years out of that one -- keeping my fingers crossed!).
On Wednesday, I saw the cardiologist. Great guy. From Nashville (gotta love that) and supported the Chinese teas.
On Friday, I had an echo stress test on a bike (no IV needed. whew). The techs kept making me laugh, which really does lower your heart rate. I thought that was just one of those nice things people tell you to cheer you up. Meanwhile, the bike pedaling automatically gets harder and harder, trying to raise your heart rate to its max. It was an interesting competition, and I passed with flying colors. Yay! Love good news.
It truly felt like cardio week last week, though, as three other friends saw their cardiologist as well, all for different reasons. Thankfully, we are all up and walking around. That counts for alot.
The other "medical" event this week was wig shopping. I get varying answers from the docs on whether I will need this, but my hair is definitely thinning. Thankfully, I had alot to start with! Though it is easier to shop for wigs when you have hair rather than afterwards, I kept putting it off. A friend took the reins, researched my options for places, made the appointment, went with me, and made it all no big deal. THAT was cool, watching her take on a dragon in my life and extinguishing its fire.
Back to chemo day: It was time to add another chemo drug to the mix. I got to choose. One has "no noticeable side effects," whatever that means. The other causes "often disfiguring skin rashes." Hmmm. Which would you choose?
The other theme this week (besides cardio) was St. Teresa. St. Theresa of the Little Flower is a constant prayer for me lately; the writings of St. Teresa of Avila were a surprise focus of the Kripalu workshop I attended this weekend; our friend, Teresa, brought a chicken pot pie (okay, she isn't a saint but we felt pretty blessed by that) and another Teresa I've never even met gave me a beautiful prayer shawl. At this point, I feel like I have to add Aunt Theresa, who showed me that, no matter what the circumstances, you should always look and act your best self, and then maybe even have a little party!
Despite all the medical appointments, after the effects of chemo wore off, I was able to feel good and be active. The week was filled with wonderful moments, big and small. It's nice not to think about cancer all the time. I often think of Kris Carr (actress who lives with stage 4 cancer) who appeared on Oprah. When Oprah asked, "Do you spend every moment thinking about dying?" Kris responded with something like, "Heck no. Right now, I'm thinking, I AM ON OPRAH!!!"
Overall life is good. On top of that, I feel like people are opening their lives and their selves to me in a different way than before, so I am trying to pass that along and do that with others I meet. On my end, it feels like you are creating a state of grace that makes miracles possible. Thank you for being so generous of spirit. Not only does this have a huge impact on me and my family, I feel like this must be shifting and impacting our world in a positive way. If a butterfly flapping its wings can create weather patterns on the other side of the world, just imagine what all our bigger acts of kindness are doing!
If you are so inclined, do continue to send prayers that the chemo is killing those cancer cells, and that I find any other avenue I need to heal this.
Much love,
Marie
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