Thank you for celebrating my birthday with me! I love hearing about the things that are so awesome in your life, and I love that you recognize that your life is awesome, whether or not you decide to share the wonderful aspects. I hope you can keep going with the gratitudes awhile longer. Me, I'm having trouble with the intentional acts of kindness, but I suppose there is always something to work on. And many thanks to those of you who brought hostess gifts!
To celebrate my birthday weekend, Tiron, the boys and I traveled to Kripalu, a yoga-retreat center in Western MA. The boys participated in a weekend-long Tribal Jam workshop (drumming, dancing, etc.) while Tiron and I got some R&R and spa treatments. During the breaks in the workshop, we spent time together walking the grounds, swimming in the lake, eating the amazing food, and playing games. We had a great time, individually and together, making a beautiful and memorable birthday for me.
I also learned that my 50th birthday was on Pentecost Sunday. How incredibly cool is that? AND my husband's cousin had a baby girl that day, too. So many good happenings converging!
When we returned, I got the results of my PET CT. Please know that I appreciate your patience in sitting with me while I waited for these. I couldn't write about them because they were confusing and difficult to process. Here is the scoop:
Three doctors read the study and shared their three different points of view:
- Stable
- Slight growth in one of the nodes but basically stable
- New "activity" but liver node is inactive and does not appear to be cancerous. GREAT NEWS.
After a bit of fretting, I finally decided that I choose "stable" combined with "liver node does not appear to be cancerous."
I especially love the "liver node does not appear to be cancerous" part, because all my outside work - prayers, meditation, energy healing, Tong Ren, etc. - has been focused on that liver node. The night before I got my results, I prayed for some sign that healing is indeed possible, and I feel encouragement in that statement. I'm in awe of the work and power of God, and in awe of your role in that, too. You really do carry me through this - I can't say that enough - and your prayers help enormously in my healing.
On Tuesday (June 12), I return to Dana Farber for a blood test to check my tumor marker (CEA for those of you familiar). My tumor marker generally provides a good indicator of what is going on inside my body. Despite the recent apparent sign from God that healing is possible, I am uncharacteristically nervous about learning my CEA number. I don't want to leave my little land of "stable."
Life continues outside the medical arena. My six-week, learn-to-row class ended and everyone scattered for the summer. I wanted to keep rowing, so a kind friend arranged an instructor for me and a friend so we could go sculling. Sculling means, out in a boat by myself.
I am not naturally drawn to the water. I learned to swim when I was 35, and water still evokes fear in my heart.. Rowing with friends provided safety in numbers. Going in a boat by myself made me both excited and nervous.
The morning started out cloudy with rain off and on. In rowing culture, rain is not a reason to cancel, so I pretended to be hardy, grabbed rain gear and made my way to the boathouse. There, I connected with my friend and our new instructor, Brenda, a lovely, patient woman my age with a sense of humor.
We walked to the boats, which were stored upside-down on a rack. Brenda gave a few instructions, then told us which boats to remove from the rack and carry to the dock. The boats looked heavy, awkward, and, if dropped, both expensive and embarrassing. My weakling arms shuddered. My pretense of being hardy evaporated. But I took a deep breath and knew I would give it a try because, if I wanted to row, I didn't have a choice.
Just then, Brenda glanced down at the dock and said, "Look, someone is coming in. Go down there and ask to use their boat."
Big exhale. Fortunately, TWO people were coming in so my friend and I didn't have to have that polite conversation of, "No, you take this boat and I'll get another." when really, I'm sure that neither of us wanted to carry it.
Once we took ownership of the boats, Brenda showed us how to get ourselves into them, and how to use the oars in sync. I stared at the boat thinking, "This is it. I will rock over and fall into the water."
As if she read my mind, Brenda said, "The water here is only four feet deep. Even if you fall in, you will be fine."
Again, big exhale.
Climbing in and strapping my feet into the boat, I thought, what if the boat tips? Again, Brenda responded to my unspoken question. "Put one oar into the water and lift the other into the air."
I hesitatingly did as instructed. I felt the boat rock sideways, but my body was in no danger of falling into the water. I could even lean into that direction and be fine.
"Now switch. Put the other oar into the air."
Still a bit scared, I did as she asked, and again, I didn't fall in. Hmmm. Maybe this boat is more stable than it looks.
Though a bit more confident, a piece of me remained unconvinced. Should the boat tip over, despite all odds, how do I unstrap my feet and get out?
Brenda was done reading my mind and told me to push off and get rowing.
I mentally reviewed: The water is shallow. The boat is fairly stable. Yes, I could potentially fall in, but that is not an immediate worry. And if I did fall in, I could hopefully figure out the strapped-in feet.
Again I exhaled, then took a deep breath and pushed off from the dock.
I row slowly, which coincidentally provides time to actually enjoy each stoke and my surroundings. The calm water under cloudy skies felt lovely and relaxing. No rain. I was happy to focus on keeping my strokes precise and steady and could think of nothing else. I did steer into some trees along the side of the river and got stuck in them. It took a moment, then I calmed down and figured my way out of the tangle.
All too soon, the lesson was over and my worries started again. How on earth will we lift these boats out of the water and carry them to the boathouse? I pushed the thought out of my mind and focused on just rowing the boat to the dock in the first place. Once there, I climbed safely out of the boat and suddenly, someone appeared and asked if they could use our boats. Problem solved!
So, maybe I can swing that again, this time, with the blood test - hoping that, while things may feel wobbly, they are actually pretty stable. Perhaps all these worries will not actually come to pass, but will be handled in wonderful and unforeseen ways.
Much love to you and more blessings than you can count,
Marie
Showing posts with label PET CT. Show all posts
Showing posts with label PET CT. Show all posts
Monday, June 11, 2012
Saturday, May 19, 2012
More tests
It feels wonderful to be off chemo, especially to have all this extra energy and extra time. Thank you for all your prayers and positive thoughts that got me to this point. They continue to help me stay calm, grounded and connected, which makes a significant impact on my daily life.
It also feels wonderful to have no doctor visits! But, the past two weeks broke that little streak. I started bleeding where I shouldn't be - not that anyone should be bleeding anywhere. I went off to the gynecologist for an exam and biopsy. The biopsy came back showing colorectal cancer, so I contacted my oncologist and my surgeon.
One thing about a cancer diagnosis - doctors, thankfully, move quickly.
My oncologist called to say something like, "You really don't want to have surgery for this. You will end up with a colostomy bag." His tone made it sound like it was the worst thing in the world. When I reminded him that I already have a colostomy bag, we both got a good laugh.
My surgeon got back to me within minutes. She arranged a pelvic MRI, and two days later, we discussed the results. The test shows a tumor in my pelvis and a tunnel that goes from one part of my pelvis to another.
Hmmm. What to do?
None of us are sure. There is always chemo. Surgery is a possibility, but it isn't pretty. There is a good possibility that this has been there all along and is simply acting up.
My last PET CT, almost a year ago, showed some "activity" in this area, so I will have another PET CT on Monday to see if there are any changes. I get the results of that scan after Memorial Day.
In the meantime, I feel pretty good in every way and am doing what I can to stay healthy. My transition to macrobiotics is coming along and I'm learning a lot. I love to cook, so food provides easy and fun experimentation.
When we built our home, I didn't care about square footage, electronics or sound system. However, I did care about the kitchen. I wanted an open, inviting kitchen with high-end appliances and was lucky enough to get a top-of-the-line, mammoth range that includes six gas burners and a huge oven. Bliss.
For about a year or two, I cooked like crazy. And then one day, I decided to go raw.
A raw food diet sounds simple but making interesting foods requires new equipment, including a dehydrator, a strong blender, and a couple of juicers. Of course, I wanted the top-of-the-line of each of these. Because raw is what it sounds like - no cooking - Tiron wondered if our massive stove would stand like an art object in the kitchen. I continued to use it to make meals for Tiron and the boys, but with nowhere near the complexity or frequency of the past.
The raw diet served me well for a few years and I made good use of all my new appliances. Then suddenly, I couldn't digest raw foods so became interested in a macrobiotic diet and lifestyle.
Immersing myself in this, I discovered that my kitchen life would not be complete without a pressure cooker. Top-of-the-line, of course.
Tiron wondered out loud how millions of people in the world cook perfectly fine rice and beans without a pressure cooker. I assumed that was a rhetorical question and not an objection.
Before I got around to researching and ordering the pressure cooker, our family hamster arrived. She arrived on a Sunday, and when the boys suggested naming her "Lucky," I thought, "She will be lucky to make it through the week."
That Tuesday, a mere two days later, Lucky was in her ball, rolling around our floor. We weren't playing close attention and then….we noticed the ball was open and empty. No Lucky. Panic ensued. Namely, my panic. And irritation. I didn't really want a hamster, and I certainly didn't want a hamster loose in our house. Deep breath. Stay calm.
Because the ball was near that lovely massive kitchen range, we looked, and found her, underneath. J-man and I waited quietly until she finally peeked out. J-man pounced on her, but Lucky was faster and retreated to her new home.
We placed food and water on the floor in front of the range, both to lure her out and to help her stay alive. Now, when I did cook on the stovetop, I had to stand about a foot away to accommodate the food and water setup on the floor. Though I rarely bake, now that I couldn't use the oven (for fear of baking the little thing underneath), baking was all I wanted to do. We set up a contraption to try to catch her in the night, which took up even more floorspace. Our traffic patterns in the kitchen revolved around these items.
The most surprising event was finding Tiron sitting quietly in the dark for about 45 minutes, waiting for her to come out.
The first night, I arrived home to his excitement. "I caught the hamster!" he said. Ever the techie, he added, "On video!" I tried to raise my excitement level to match his.
I began to view our stove as the most expensive hamster cage ever. Lucky had it pretty well - water, food and freedom from overly-enthusiastic little boy hugs. But on the second night, Tiron actually did catch her. Physically.
We are all back in our respective places: The hamster running in her cage, the dog sleeping wherever he wants, the boys playing outside (now over the novelty of their new pet), Tiron working in his office instead of waiting in the dark, and me, in the kitchen awaiting the arrival of my pressure cooker as I figure out these new recipes.
I hope that you are also exactly where you are meant to be.
Many blessings and love,
Marie
It also feels wonderful to have no doctor visits! But, the past two weeks broke that little streak. I started bleeding where I shouldn't be - not that anyone should be bleeding anywhere. I went off to the gynecologist for an exam and biopsy. The biopsy came back showing colorectal cancer, so I contacted my oncologist and my surgeon.
One thing about a cancer diagnosis - doctors, thankfully, move quickly.
My oncologist called to say something like, "You really don't want to have surgery for this. You will end up with a colostomy bag." His tone made it sound like it was the worst thing in the world. When I reminded him that I already have a colostomy bag, we both got a good laugh.
My surgeon got back to me within minutes. She arranged a pelvic MRI, and two days later, we discussed the results. The test shows a tumor in my pelvis and a tunnel that goes from one part of my pelvis to another.
Hmmm. What to do?
None of us are sure. There is always chemo. Surgery is a possibility, but it isn't pretty. There is a good possibility that this has been there all along and is simply acting up.
My last PET CT, almost a year ago, showed some "activity" in this area, so I will have another PET CT on Monday to see if there are any changes. I get the results of that scan after Memorial Day.
In the meantime, I feel pretty good in every way and am doing what I can to stay healthy. My transition to macrobiotics is coming along and I'm learning a lot. I love to cook, so food provides easy and fun experimentation.
When we built our home, I didn't care about square footage, electronics or sound system. However, I did care about the kitchen. I wanted an open, inviting kitchen with high-end appliances and was lucky enough to get a top-of-the-line, mammoth range that includes six gas burners and a huge oven. Bliss.
For about a year or two, I cooked like crazy. And then one day, I decided to go raw.
A raw food diet sounds simple but making interesting foods requires new equipment, including a dehydrator, a strong blender, and a couple of juicers. Of course, I wanted the top-of-the-line of each of these. Because raw is what it sounds like - no cooking - Tiron wondered if our massive stove would stand like an art object in the kitchen. I continued to use it to make meals for Tiron and the boys, but with nowhere near the complexity or frequency of the past.
The raw diet served me well for a few years and I made good use of all my new appliances. Then suddenly, I couldn't digest raw foods so became interested in a macrobiotic diet and lifestyle.
Immersing myself in this, I discovered that my kitchen life would not be complete without a pressure cooker. Top-of-the-line, of course.
Tiron wondered out loud how millions of people in the world cook perfectly fine rice and beans without a pressure cooker. I assumed that was a rhetorical question and not an objection.
Before I got around to researching and ordering the pressure cooker, our family hamster arrived. She arrived on a Sunday, and when the boys suggested naming her "Lucky," I thought, "She will be lucky to make it through the week."
That Tuesday, a mere two days later, Lucky was in her ball, rolling around our floor. We weren't playing close attention and then….we noticed the ball was open and empty. No Lucky. Panic ensued. Namely, my panic. And irritation. I didn't really want a hamster, and I certainly didn't want a hamster loose in our house. Deep breath. Stay calm.
Because the ball was near that lovely massive kitchen range, we looked, and found her, underneath. J-man and I waited quietly until she finally peeked out. J-man pounced on her, but Lucky was faster and retreated to her new home.
We placed food and water on the floor in front of the range, both to lure her out and to help her stay alive. Now, when I did cook on the stovetop, I had to stand about a foot away to accommodate the food and water setup on the floor. Though I rarely bake, now that I couldn't use the oven (for fear of baking the little thing underneath), baking was all I wanted to do. We set up a contraption to try to catch her in the night, which took up even more floorspace. Our traffic patterns in the kitchen revolved around these items.
The most surprising event was finding Tiron sitting quietly in the dark for about 45 minutes, waiting for her to come out.
The first night, I arrived home to his excitement. "I caught the hamster!" he said. Ever the techie, he added, "On video!" I tried to raise my excitement level to match his.
I began to view our stove as the most expensive hamster cage ever. Lucky had it pretty well - water, food and freedom from overly-enthusiastic little boy hugs. But on the second night, Tiron actually did catch her. Physically.
We are all back in our respective places: The hamster running in her cage, the dog sleeping wherever he wants, the boys playing outside (now over the novelty of their new pet), Tiron working in his office instead of waiting in the dark, and me, in the kitchen awaiting the arrival of my pressure cooker as I figure out these new recipes.
I hope that you are also exactly where you are meant to be.
Many blessings and love,
Marie
Wednesday, July 6, 2011
PET CT shows activity, requires further testing
Thank you for being here for me, in the midst of everything that is going on in your life, and in the midst of this amazing summer! And in this crazy world of so many things to pray for, thank you for continuing to keep me in your thoughts and prayers.
I wanted to share the results of last week's PET CT. I can't say this is a total surprise, but I was still stunned: The PET CT revealed "some activity" on (in?) my liver, and my CEA rose by 1.5 points to 3.7. (Normal is below 2.5)
In the category of things can always be worse, I hated that my CEA kept rising by 0.2 every month. Of course, now I would love to have a rise of only 0.2!
Of course, I would love to not be concerned about this at all. It took a few days after hearing the news to regain my footing again. It has been marvelous to be chemo-free for almost six months, and I want more of THAT.
In those six months, I feel like I've been able to look more outside myself. I could enjoy time with Tiron and the kids, be more involved with their activities, consider volunteering and doing other things that are just plain fun. I truly loved doing simple, everyday things. I even loved being able to wheel in the trash cans, especially since that is so out of character for me.
Also during those same six months, it has been sobering to see so many others dealing with various forms of cancer. The parents and siblings of my friends. Parents of my children's friends (who are now friends of mine). Friends from high school. New friends. Friends of friends. And, in the category of "most heartbreaking," children of my friends. I hope that I can be as supportive of them as you have been of me. It is an honor that they invite me to be.
Yesterday, I learned about an incredibly nice guy, who sometimes works on our house, always with a smile and good cheer, who was just diagnosed with a life-threatening cancer, and his road appears uncertain. Sole breadwinner in the family. Oldest child is around five years old.
It can feel so overwhelming.
Yet it is vitally important that we are there for each other.
On the day I had my PET CT, a friend was having a CT scan on her hopefully-gone tumor. Her test was in the morning; mine was in the afternoon.
Even if I can keep my anxiety at bay, there always seems to be some fumbling around these appointments: A bad stick to my arm. A bad attitude from someone. Something that can turn an already-stressful day into a bad experience overall.
But, on this particular day, my friend left a note for me. A short, scribbled note on a small piece of notebook paper. For me, it was a warm and wonderful gift, making me feel like I had a friend in the room.
For the staff, it was an energizing force that literally passed through them. Everyone I ran into, when they learned my name, asked if I received the note. And when I said yes, they brightened up and then talked excitedly with someone around them about the fact that someone had left this note for me, highlighting their role in getting it to me.
These little things can change the course of a day. I was beyond touched that a friend would think about me on the day of her own big test, write a note and actually deliver it to the department where I would be. It changed my entire experience of the test. Now, instead of remembering the test itself, I primarily remember the note.
Plus, we were all thrilled with the realization that that little scrap of paper made it to me despite shift changes, messy desks and staff who have many other patients to think about and treat. That little note brought more joy and good feelings than I think she could have conceived. With it, she lifted me, a whole department, and the ripple effects from there.
So, for all of us, whatever we are dealing with, I send out my best and aim to do what I can for everyone who needs it.
Next step: I had an MRI this morning to get a better look at this. Stay tuned. Thank you for being there, for your prayers, and for every little thing you do.
Love,
Marie
I wanted to share the results of last week's PET CT. I can't say this is a total surprise, but I was still stunned: The PET CT revealed "some activity" on (in?) my liver, and my CEA rose by 1.5 points to 3.7. (Normal is below 2.5)
In the category of things can always be worse, I hated that my CEA kept rising by 0.2 every month. Of course, now I would love to have a rise of only 0.2!
Of course, I would love to not be concerned about this at all. It took a few days after hearing the news to regain my footing again. It has been marvelous to be chemo-free for almost six months, and I want more of THAT.
In those six months, I feel like I've been able to look more outside myself. I could enjoy time with Tiron and the kids, be more involved with their activities, consider volunteering and doing other things that are just plain fun. I truly loved doing simple, everyday things. I even loved being able to wheel in the trash cans, especially since that is so out of character for me.
Also during those same six months, it has been sobering to see so many others dealing with various forms of cancer. The parents and siblings of my friends. Parents of my children's friends (who are now friends of mine). Friends from high school. New friends. Friends of friends. And, in the category of "most heartbreaking," children of my friends. I hope that I can be as supportive of them as you have been of me. It is an honor that they invite me to be.
Yesterday, I learned about an incredibly nice guy, who sometimes works on our house, always with a smile and good cheer, who was just diagnosed with a life-threatening cancer, and his road appears uncertain. Sole breadwinner in the family. Oldest child is around five years old.
It can feel so overwhelming.
Yet it is vitally important that we are there for each other.
On the day I had my PET CT, a friend was having a CT scan on her hopefully-gone tumor. Her test was in the morning; mine was in the afternoon.
Even if I can keep my anxiety at bay, there always seems to be some fumbling around these appointments: A bad stick to my arm. A bad attitude from someone. Something that can turn an already-stressful day into a bad experience overall.
But, on this particular day, my friend left a note for me. A short, scribbled note on a small piece of notebook paper. For me, it was a warm and wonderful gift, making me feel like I had a friend in the room.
For the staff, it was an energizing force that literally passed through them. Everyone I ran into, when they learned my name, asked if I received the note. And when I said yes, they brightened up and then talked excitedly with someone around them about the fact that someone had left this note for me, highlighting their role in getting it to me.
These little things can change the course of a day. I was beyond touched that a friend would think about me on the day of her own big test, write a note and actually deliver it to the department where I would be. It changed my entire experience of the test. Now, instead of remembering the test itself, I primarily remember the note.
Plus, we were all thrilled with the realization that that little scrap of paper made it to me despite shift changes, messy desks and staff who have many other patients to think about and treat. That little note brought more joy and good feelings than I think she could have conceived. With it, she lifted me, a whole department, and the ripple effects from there.
So, for all of us, whatever we are dealing with, I send out my best and aim to do what I can for everyone who needs it.
Next step: I had an MRI this morning to get a better look at this. Stay tuned. Thank you for being there, for your prayers, and for every little thing you do.
Love,
Marie
Thursday, January 20, 2011
Chemo on hold!
Thank you so much for your support, your positive thoughts and your prayers. I feel like you have really carried me along this path.
I'm kind of stunned to share this good news and almost don't believe it. Last week, I had a PET CT and got the results on Tuesday -- there is no evidence of disease. There is a small amount of activity on the PET but nothing on the CT.
It is kind of weird to be in this position, in a good way.
We talked with the doctor about options: Continuing chemo, modifying my chemo regimen, and taking a break (I like to think of it as quitting altogether) were among the choices, and I chose Door #3 (ha ha) -- I decided to stop chemo. They will monitor my blood levels in a month, and I get another PET CT in two months.
So that means, two months with no chemo. Since I have chemo every other week, that is four whole weeks that I regain in my life.
I'm relieved in so many ways, but mostly, I truly can't believe and process my test results. It really does feel like a miracle.
So, I'm trying to keep a steady breath, and remain really thankful and really hopeful. I'm not looking too far into the future, but for me, two months is long-term planning anyway. This whole thing really does force one to be in the moment.
In the meantime, my goal is to regain my strength and continue anything healthy. Thank you for ALL you have done to help get to this point.
If you want to read further, I'll share the story of the PET CT:
I went in for my PET CT on Tuesday of last week. In this test, they inject a radioactive substance into your veins. In the past, Nurse Barbara would insist she could stick me, and stick me she would -- a few times, always unsuccessfully, before then getting Nurse Virginia, who actually could access a vein.
This time, Angel Chemo Nurse Julie suggested that I use my power port (a device implanted in my chest). Why no one suggested that before, who knows? Anyway, Nurse Julie accessed the port just before my test and I made my way to the PET CT area of the hospital. It was funky to walk outside with tubes hanging out of my chest, but not bad.
When I walked into the nurses' office there, Nurse Barbara's face fell. I immediately told her -- I'm already accessed! I swear, she cheered. (She's truly a nice person when she isn't poking me with needles.)
I got the injection, drank the drink, and then laid on the table for the (20? 40? minute) test. After the test, I got a whole new nurse - Let's call her "Nurse Unnamed" -- whose job was to disconnect the needle from my chest.
Nurse Unnamed insisted on two separate ways of confirming that I had a power port in my chest. I tried to tell her that I had it placed at this hospital, she could look in the system. She did, but wanted more verification.
Now, for anyone who doesn't know, I can actually remove the needle from the port myself, at home. I even did it once! That basically demonstrates that it isn't complicated. But she kept refusing to disconnect me. She finally left me alone, I assume to see if she could figure out an alternative she was comfortable with.
While she was gone, I looked down at my body. I generally don't have body issues. I never thought I was too thin or too fat, never had issues with my boobs or butt, mostly felt like my body, and everyone else's, seemed to be just fine. Even with all my surgeries, I still didn't really dislike my body.
But right then, I was noticing my body in a new way. Because I can't wear my bra for the test, I didn't have my prosthesis on. I could see my ostomy bag and my port. So, some parts missing, and some parts added. I saw my scars from my surgeries: my mastectomy, my hernia surgery, my initial colon resection, the removal of a tumor from two summers ago, the original ostomy placement, the closed holes where the tubes were, the vertical scar on my belly from my most recent surgery. Typically, I think of them as a road map of my life. Right now, though, there just seemed to be an awful lot of them.
When did my body get like this? How did it get to this point? I was suddenly tired of everyone accessing my body in so many different ways, through cuts and needles and everything else I've done just to stay alive over the past five years. Sitting in that hospital room, along with so many others who were in chairs, on beds and in wheelchairs, waiting for treatment, I felt like a victim. And I hated it.
I decided that I needed to take back some power. So, I looked at my options. I could remove this myself. Or I could return to the infusion unit and ask them to remove it. Nurse Unnamed did not have to do something that she made her uncomfortable, and I would not be at her mercy.
Ironically, once I acted like I had options, she decided to go ahead and do it. Out of all the stressful elements of the test, I didn't expect the disconnect to be the most hassle. But it was manageable.
So hopefully, I can remember that, even in situations that don't feel great, there are options, and I have choices. Right now, I'm happy to have the choice to take a "chemo holiday" and hope it is a good, long one. Thank you again for all you have done to help me get to now, and for always believing that this is possible. That belief really expands my world.
Have a most excellent day.
Much love to you,
Marie
I'm kind of stunned to share this good news and almost don't believe it. Last week, I had a PET CT and got the results on Tuesday -- there is no evidence of disease. There is a small amount of activity on the PET but nothing on the CT.
It is kind of weird to be in this position, in a good way.
We talked with the doctor about options: Continuing chemo, modifying my chemo regimen, and taking a break (I like to think of it as quitting altogether) were among the choices, and I chose Door #3 (ha ha) -- I decided to stop chemo. They will monitor my blood levels in a month, and I get another PET CT in two months.
So that means, two months with no chemo. Since I have chemo every other week, that is four whole weeks that I regain in my life.
I'm relieved in so many ways, but mostly, I truly can't believe and process my test results. It really does feel like a miracle.
So, I'm trying to keep a steady breath, and remain really thankful and really hopeful. I'm not looking too far into the future, but for me, two months is long-term planning anyway. This whole thing really does force one to be in the moment.
In the meantime, my goal is to regain my strength and continue anything healthy. Thank you for ALL you have done to help get to this point.
If you want to read further, I'll share the story of the PET CT:
I went in for my PET CT on Tuesday of last week. In this test, they inject a radioactive substance into your veins. In the past, Nurse Barbara would insist she could stick me, and stick me she would -- a few times, always unsuccessfully, before then getting Nurse Virginia, who actually could access a vein.
This time, Angel Chemo Nurse Julie suggested that I use my power port (a device implanted in my chest). Why no one suggested that before, who knows? Anyway, Nurse Julie accessed the port just before my test and I made my way to the PET CT area of the hospital. It was funky to walk outside with tubes hanging out of my chest, but not bad.
When I walked into the nurses' office there, Nurse Barbara's face fell. I immediately told her -- I'm already accessed! I swear, she cheered. (She's truly a nice person when she isn't poking me with needles.)
I got the injection, drank the drink, and then laid on the table for the (20? 40? minute) test. After the test, I got a whole new nurse - Let's call her "Nurse Unnamed" -- whose job was to disconnect the needle from my chest.
Nurse Unnamed insisted on two separate ways of confirming that I had a power port in my chest. I tried to tell her that I had it placed at this hospital, she could look in the system. She did, but wanted more verification.
Now, for anyone who doesn't know, I can actually remove the needle from the port myself, at home. I even did it once! That basically demonstrates that it isn't complicated. But she kept refusing to disconnect me. She finally left me alone, I assume to see if she could figure out an alternative she was comfortable with.
While she was gone, I looked down at my body. I generally don't have body issues. I never thought I was too thin or too fat, never had issues with my boobs or butt, mostly felt like my body, and everyone else's, seemed to be just fine. Even with all my surgeries, I still didn't really dislike my body.
But right then, I was noticing my body in a new way. Because I can't wear my bra for the test, I didn't have my prosthesis on. I could see my ostomy bag and my port. So, some parts missing, and some parts added. I saw my scars from my surgeries: my mastectomy, my hernia surgery, my initial colon resection, the removal of a tumor from two summers ago, the original ostomy placement, the closed holes where the tubes were, the vertical scar on my belly from my most recent surgery. Typically, I think of them as a road map of my life. Right now, though, there just seemed to be an awful lot of them.
When did my body get like this? How did it get to this point? I was suddenly tired of everyone accessing my body in so many different ways, through cuts and needles and everything else I've done just to stay alive over the past five years. Sitting in that hospital room, along with so many others who were in chairs, on beds and in wheelchairs, waiting for treatment, I felt like a victim. And I hated it.
I decided that I needed to take back some power. So, I looked at my options. I could remove this myself. Or I could return to the infusion unit and ask them to remove it. Nurse Unnamed did not have to do something that she made her uncomfortable, and I would not be at her mercy.
Ironically, once I acted like I had options, she decided to go ahead and do it. Out of all the stressful elements of the test, I didn't expect the disconnect to be the most hassle. But it was manageable.
So hopefully, I can remember that, even in situations that don't feel great, there are options, and I have choices. Right now, I'm happy to have the choice to take a "chemo holiday" and hope it is a good, long one. Thank you again for all you have done to help me get to now, and for always believing that this is possible. That belief really expands my world.
Have a most excellent day.
Much love to you,
Marie
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
Wednesday, May 20, 2009
After the PET CT
Thank you so much for the great vibes! I did the whole PET CT routine myself and I think I did okay! I kept picturing a friend in the chair next to me, and that made me smile. But I'm glad you weren't there. Though the official line on the radiation I got is that it is okay to be around the general public, the nurse, unprompted, told me that her off-the-record opinion is that I should stay away from people as much as possible for 20 hours. So I am.
Because I am a hard stick, I arrived early to get an IV nurse. She did this really cool thing to try and find a vein -- instead of the rubber tourniquet, they used a blood pressure cuff and found a vein, in my arm, that I don't think anyone's stuck before. And did it, first try. That nurse was awesome.
The radioactive stuff that they injected into my veins came in this metal case with extra padding inside to protect whomever is carrying it. Lovely thought. No wonder my veins rebel. They probably wonder what toxic chemical is coming next.
The people were really nice, and the test went smoothly.
After the whole thing, I went to Whole Foods to get big bottles of water and some organic greens to balance out the whole experience.
Results are in on Friday! We are visualizing randomly fluctuating cea levels for no apparent reason.
Love to you all,
Marie
Because I am a hard stick, I arrived early to get an IV nurse. She did this really cool thing to try and find a vein -- instead of the rubber tourniquet, they used a blood pressure cuff and found a vein, in my arm, that I don't think anyone's stuck before. And did it, first try. That nurse was awesome.
The radioactive stuff that they injected into my veins came in this metal case with extra padding inside to protect whomever is carrying it. Lovely thought. No wonder my veins rebel. They probably wonder what toxic chemical is coming next.
The people were really nice, and the test went smoothly.
After the whole thing, I went to Whole Foods to get big bottles of water and some organic greens to balance out the whole experience.
Results are in on Friday! We are visualizing randomly fluctuating cea levels for no apparent reason.
Love to you all,
Marie
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