Thank you for staying tuned and for your patience. The past two weeks have been filled with doctor appointments as we sort through this.
The MRI confirmed that the lesion on my liver is indeed there and cancerous. I considered my liver to be a "no-fly zone" when it came to cancer. Looks like we have a violator.
The next step is to decide what to do about it. It is located near / on the edge of the liver, near the diaphragm.
Luckily, I get to choose what is behind Door #1, Door #2, or Door #3. I suppose I can also pick what is in the envelope that Carol Merrill is holding, some as-yet unrevealed goodie.
Here are the options as I see them:
Door #1: Stereotactic ablation
This radiological procedure, often used for liver lesions, applies heat or cold to freeze the lesion (think - like a wart). However, because of the location of mine, it is a bit more complicated to protect the diaphragm. Still, it is do-able.
Door #2: Proton beam radiation
My mental picture of this one is that they shoot a proton "bomb" filled with radiation into the lesion. Once it reaches the inside of the lesion, the proton is programmed to release its radiation. Very high-tech, and, as side effects go, minimal. It takes about 2 weeks of prep plus two weeks of treatment, then is done. It has been effective for lung lesions, but is still in the experimental phase for liver lesions. It doesn't sound like the most comfortable procedure, but it doesn't feel scary to me, other than the fact that there will be much radiation used, as well as a few CT scans (meaning more radiation) for guidance.
Door #3: Surgery
Those of you who have been following this saga for the past few years may remember the big-gun surgery that I talked about awhile ago. Though MGH, Dana Farber and Sloan Kettering don't yet do it, I could have it done in the D.C. area, Pittsburgh, central Mass and Europe. Makes it feel a bit exotic and almost sexy. THAT is how weird my world has become.
Here is how I think of this option -- they open you up, cut out everything they can find, "thin" the peritoneal fat, then pour hot chemo into your abdomen and massage it into every place possible. Then they close you up and turn you like a pig on a spit, so that the chemo flows into the nooks and crannies of your innards. You wake up with a minimum of 17 tubes sticking out of your body. As scary as that sounds, I considered that it would be scarier to wake up with no tubes, indicating that they couldn't do the full surgery. Anyway, the hospital stay is something like 4 - 6 weeks, followed by recovery at home. It does sound brutal, but it brings a possibility of a cure, which the others do not.
Oh, and as a bonus prize, no matter what door I pick, I get to return to chemo again!
Still, I do feel fortunate to have choices. That week in particular, when I was faced with the deaths of others who have so graciously handled all the crap that cancer deals, I am especiallly aware of the fact that I am lucky to still be walking on this earth.
I had this in mind when I walked past a man in Harvard Square holding a sign that said, "Cannot work due to disease." Wondering what he was facing, I decided to talk with him.
"The doctors found a spot on my liver and they need to biopsy it," he said.
I couldn't figure out how this kept him from working, and I am sure that showed on my face.
He continued, "It might be cancerous."
He started to describe the biopsy procedure. Even knowing the fear of facing the unknown, I had experienced too much this week and needed to consciously muster some patience for this.
I decided to tell him, "I have a lesion on my liver. And they know it is cancer." I tried to say it kindly.
And then I realized, he felt overwhelmed and completely alone, unable to connect with even another who is on that path. Not only was he lacking financial resources, he also lacked the inner resources to deal with whatever life threw his way. No amount of money would fix that.
I thought of the two people I know who died this week, how they were both younger than him, how they handled their situation with grace and strength. I thought of how their families and friends supported them so closely that the path was not just patient's but woven throughout all their lives, how they remain connected in spite of the risk of intense grief. I thought of how they carry that person with them in so many ways, how they help their love to endure, and how we all support each other as we face life's joys and challenges.
Of course, he could have been feeding me a line. My kids even said, "Did you see those muscles, Mom? How could he be homeless?"
Comparing my situation to the one he described, I feel fortunate indeed. Thank you for being open to us, for allowing us to impact you, and for hanging in there with us. And if you have any idea of how I can make this decision, let me know. I've never been good at Let's Make a Deal and can't even decide on dinner at times; how can I decide this!
Much love and laughter,
Marie
Thursday, July 28, 2011
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
Monday, June 13, 2011
Shift the Energy
Thank you for being there. Thank you for being there in so many ways: for support, for listening, for laughing, for sharing. Thank you for allowing me to share in your life, and I feel so fortunate that, especially in these past few months, I've been able to do that more actively.
I am thrilled to share the news that my CEA level is holding steady. The CEA is a marker in my blood that can often indicate the presence of a tumor growing.
Below 2.5 is considered to be normal. My numbers, every month since January have been
1.6
1.8
2.0
2.2
Notice a pattern? Data-oriented me was pretty worried about the one for May, but it was flat at 2.2, and for that, I am immensely grateful. My next test is a PET CT at the end of June -- all prayers and positive thoughts are welcome!
I feel so fortunate to be off chemo since mid-January. My energy and stamina are returning, along with my hair and weight, and the stress level in our household is noticeably reduced. This all makes it easier to look outside myself, and I now see so many people with cancer who can use help and prayers. Some are older, most are my age, quite a few are younger than I am. I hope I am a fraction of the help, support and presence that you have been to me. I know that this is big part of my good standing these days. Regardless of your beliefs, I feel like the divine is working through you, and that you are blessing me with your grace.
I heard an inspiring story last night. Friends of ours had a home destroyed by water. It is a relatively new home, and needs to be totally gutted and rebuilt. I can't imagine the stress that goes along with this. However, like many resilient people, they put a positive spin on it: No one was hurt. It isn't our primary residence.
That alone was impressive, but then these folks went one step further: They took the negative energy from that episode and swung it around to the positive by making a donation to flood victims. While they were experiencing the pain of extensive water damage, they realized that they were still in a position to help others, and then did so. I stand in awe.
You all have done the same: While you each have your own life stresses going one, you have been so incredibly generous with me, with your time and prayers and support. I am continually touched by this, and I hope that I can shift the energy in a positive way to others and back to you.
Much love and gratitude,
Marie
P.S. For those of you interested in "cancer experience" stories:
I entered the elevator at MGH to get to the seventh floor for my blood test. Over the past year, I developed a phobia of touching these particular hospital elevator buttons.
Like many people with phobias, I have my own coping strategy. I enter the elevator then wait to see if anyone else pushes the button to my floor so that I don't have to. Luckily, a blonde woman standing by the buttons pressed 7; I breathed a small sigh of relief.
Just before the doors closed, an older couple entered the elevator. Both were tall and thin and the woman seemed to be in slightly better cheer than the man. She looked at the display of buttons and said to her husband, "Oh, seven has already been pressed."
At that moment, my brain-mouth filter didn't work and I blurted out, "Popular floor."
The couple and the blonde woman looked at me like someone who didn't fit into the club. I felt a mix of things: grateful that I no longer looked like a patient, desire to prove that I am part of the group (what was up with THAT?), and a small bit of embarrassment at simply saying something that may have made someone else uncomfortable. I willed my mouth to stay closed.
The blonde woman by the buttons turned to the tall, thin man and said, "I recognize you. You and my husband got chemo together. You look like you put on weight."
Only in chemo-world can that be considered a compliment.
He and his wife shared a puzzled look. Clearly neither of them remembered her, so he just said, "How is your husband doing?"
"Well," she said.
Where was this husband? I wondered. And why on earth would you ever bounce around here alone?
I looked at the three of them. It seemed like the tall, thin man was still in treatment, that the husband of the blonde woman was in the clear, and I was somewhere in between. I very much didn't and don't want to be back on chemo. Despite the cheerful banter of the couple, I could feel the stress and worry. I also realized that, at any moment in time, I could be in any of their shoes, and they in mine. So much of life is out of our control. I was again grateful for where I was.
"Is this your daughter?" the blonde woman asked him. His companion in no way looked like she could be his daughter. But then again, cancer ages all of us.
"My wife," he said curtly.
The doors finally opened to the seventh floor and we all marched toward the doctors' offices and down our own, unique paths.
I am thrilled to share the news that my CEA level is holding steady. The CEA is a marker in my blood that can often indicate the presence of a tumor growing.
Below 2.5 is considered to be normal. My numbers, every month since January have been
1.6
1.8
2.0
2.2
Notice a pattern? Data-oriented me was pretty worried about the one for May, but it was flat at 2.2, and for that, I am immensely grateful. My next test is a PET CT at the end of June -- all prayers and positive thoughts are welcome!
I feel so fortunate to be off chemo since mid-January. My energy and stamina are returning, along with my hair and weight, and the stress level in our household is noticeably reduced. This all makes it easier to look outside myself, and I now see so many people with cancer who can use help and prayers. Some are older, most are my age, quite a few are younger than I am. I hope I am a fraction of the help, support and presence that you have been to me. I know that this is big part of my good standing these days. Regardless of your beliefs, I feel like the divine is working through you, and that you are blessing me with your grace.
I heard an inspiring story last night. Friends of ours had a home destroyed by water. It is a relatively new home, and needs to be totally gutted and rebuilt. I can't imagine the stress that goes along with this. However, like many resilient people, they put a positive spin on it: No one was hurt. It isn't our primary residence.
That alone was impressive, but then these folks went one step further: They took the negative energy from that episode and swung it around to the positive by making a donation to flood victims. While they were experiencing the pain of extensive water damage, they realized that they were still in a position to help others, and then did so. I stand in awe.
You all have done the same: While you each have your own life stresses going one, you have been so incredibly generous with me, with your time and prayers and support. I am continually touched by this, and I hope that I can shift the energy in a positive way to others and back to you.
Much love and gratitude,
Marie
P.S. For those of you interested in "cancer experience" stories:
I entered the elevator at MGH to get to the seventh floor for my blood test. Over the past year, I developed a phobia of touching these particular hospital elevator buttons.
Like many people with phobias, I have my own coping strategy. I enter the elevator then wait to see if anyone else pushes the button to my floor so that I don't have to. Luckily, a blonde woman standing by the buttons pressed 7; I breathed a small sigh of relief.
Just before the doors closed, an older couple entered the elevator. Both were tall and thin and the woman seemed to be in slightly better cheer than the man. She looked at the display of buttons and said to her husband, "Oh, seven has already been pressed."
At that moment, my brain-mouth filter didn't work and I blurted out, "Popular floor."
The couple and the blonde woman looked at me like someone who didn't fit into the club. I felt a mix of things: grateful that I no longer looked like a patient, desire to prove that I am part of the group (what was up with THAT?), and a small bit of embarrassment at simply saying something that may have made someone else uncomfortable. I willed my mouth to stay closed.
The blonde woman by the buttons turned to the tall, thin man and said, "I recognize you. You and my husband got chemo together. You look like you put on weight."
Only in chemo-world can that be considered a compliment.
He and his wife shared a puzzled look. Clearly neither of them remembered her, so he just said, "How is your husband doing?"
"Well," she said.
Where was this husband? I wondered. And why on earth would you ever bounce around here alone?
I looked at the three of them. It seemed like the tall, thin man was still in treatment, that the husband of the blonde woman was in the clear, and I was somewhere in between. I very much didn't and don't want to be back on chemo. Despite the cheerful banter of the couple, I could feel the stress and worry. I also realized that, at any moment in time, I could be in any of their shoes, and they in mine. So much of life is out of our control. I was again grateful for where I was.
"Is this your daughter?" the blonde woman asked him. His companion in no way looked like she could be his daughter. But then again, cancer ages all of us.
"My wife," he said curtly.
The doors finally opened to the seventh floor and we all marched toward the doctors' offices and down our own, unique paths.
__._,_.___
Monday, April 4, 2011
Continued Chemo Vacation!
My chemo vacation is extended! My PET CT came back clear and my CEA rose a tiny bit but remains in the normal range. This is the best news I could hope for. (Okay, I would hope for a stable CEA level but still, I'll take it.)
I am grateful and humbled and exhaling again.
This time, the test itself went fine with no trauma, thanks to the happy surprise of having Jubilent Julie, my fave nurse, access my port prior to the test.
Two days after the test, the drive to the doctor's office to hear the results felt a bit like going before a parole board: Would I be granted freedom? I felt physically well, but I know from experience that that is no indication of what is really going on inside my body.
When I got the news: happy happy joy joy -- I get another four weeks with no chemo, then a blood test. Assuming that is normal, another blood test the next month. Then, a PET CT three months from now.
Thank you for all your support in so many ways. Your friendship, your prayers, carrying the torch of hope when I couldn't, your forgiveness of my social lapses, your support of my wacky diet....it truly runs the gamut but is all so helpful to me and to my family.
It is hard to know exactly what is working. I continue my raw vegan diet. I'm doing herbs and tinctures, energy medicine, healing Masses, meditation, prayer, yoga, acupuncture, therapy....I'm sure there is more. I try to spend time with friends who are upbeat and have good energy. This is the best but also hardest to do, given all our busy lifestyles.
With the kids, we are feeling our way as we go, often reminded that our support systems are not necessarily theirs. For example, when we started down this path and A-man was four years old, he prayed regularly, sincerely and with an open heart for my recovery. When I had to go back on chemo last year, he decided that he didn't want to pray to a God who he felt wasn't listening. That led to lots of good discussions about God and Jesus, hopefully helping him to form his own beliefs. Recently, he told me that he is praying to Zeus and wants to go to a Greek church. I don't think those are connected, but, Greek friends: anyone want to take him there?
Last week, picking up A-man from school, he handed me a small piece of wood. On top of this wood balanced a large pile of sawdust. Obviously, he intended to carry this potential mess home. Even worse, he intended for me to carry this potential mess home. He was thrilled with his find so I swallowed my reservations and gingerly accepted the wood / sawdust combo. As we walked, he chattered away in his typically happy mood, then suddenly informed me that I was carrying magical dust. He encouraged me to take a pinch (of the sawdust) and blow it away while making a wish. And, oh, if I didn't mind wishing for what he wanted, please wish that I get well. So I guess that, in addition to prayers, we have pixie dust.
Besides their coping mechanisms, we are noticing that each of us takes our time time to acclimate to the news that comes with each new report. Tiron and I will hear any news and let it settle for a bit, getting used to it. Sometimes, not always, we'll share the news with the boys. This time, when I told them about the good scan, their response was, "You had a good scan before. That doesn't mean anything." It didn't dampen my enthusiasm, but did show me that they need more definitive, day-to-day proof of wellness in their world. We would all like that, I guess.
So, whether you are sharing prayers or pixie dust, or something else, thank you for continuing it with us. We all really rely on the sincere connection between us, and for that, too, I am grateful.
Love and blessings to you,
Marie
I am grateful and humbled and exhaling again.
This time, the test itself went fine with no trauma, thanks to the happy surprise of having Jubilent Julie, my fave nurse, access my port prior to the test.
Two days after the test, the drive to the doctor's office to hear the results felt a bit like going before a parole board: Would I be granted freedom? I felt physically well, but I know from experience that that is no indication of what is really going on inside my body.
When I got the news: happy happy joy joy -- I get another four weeks with no chemo, then a blood test. Assuming that is normal, another blood test the next month. Then, a PET CT three months from now.
Thank you for all your support in so many ways. Your friendship, your prayers, carrying the torch of hope when I couldn't, your forgiveness of my social lapses, your support of my wacky diet....it truly runs the gamut but is all so helpful to me and to my family.
It is hard to know exactly what is working. I continue my raw vegan diet. I'm doing herbs and tinctures, energy medicine, healing Masses, meditation, prayer, yoga, acupuncture, therapy....I'm sure there is more. I try to spend time with friends who are upbeat and have good energy. This is the best but also hardest to do, given all our busy lifestyles.
With the kids, we are feeling our way as we go, often reminded that our support systems are not necessarily theirs. For example, when we started down this path and A-man was four years old, he prayed regularly, sincerely and with an open heart for my recovery. When I had to go back on chemo last year, he decided that he didn't want to pray to a God who he felt wasn't listening. That led to lots of good discussions about God and Jesus, hopefully helping him to form his own beliefs. Recently, he told me that he is praying to Zeus and wants to go to a Greek church. I don't think those are connected, but, Greek friends: anyone want to take him there?
Last week, picking up A-man from school, he handed me a small piece of wood. On top of this wood balanced a large pile of sawdust. Obviously, he intended to carry this potential mess home. Even worse, he intended for me to carry this potential mess home. He was thrilled with his find so I swallowed my reservations and gingerly accepted the wood / sawdust combo. As we walked, he chattered away in his typically happy mood, then suddenly informed me that I was carrying magical dust. He encouraged me to take a pinch (of the sawdust) and blow it away while making a wish. And, oh, if I didn't mind wishing for what he wanted, please wish that I get well. So I guess that, in addition to prayers, we have pixie dust.
Besides their coping mechanisms, we are noticing that each of us takes our time time to acclimate to the news that comes with each new report. Tiron and I will hear any news and let it settle for a bit, getting used to it. Sometimes, not always, we'll share the news with the boys. This time, when I told them about the good scan, their response was, "You had a good scan before. That doesn't mean anything." It didn't dampen my enthusiasm, but did show me that they need more definitive, day-to-day proof of wellness in their world. We would all like that, I guess.
So, whether you are sharing prayers or pixie dust, or something else, thank you for continuing it with us. We all really rely on the sincere connection between us, and for that, too, I am grateful.
Love and blessings to you,
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
Monday, January 3, 2011
Visit to Dana Farber
If you wrote to me last time around, please know that I read and appreciated every single email. It really lifts me up. The last round of chemo knocked me down hard and I couldn't answer emails or write anything. And then, when I started feeling better again, the kids started school vacation and it was like being on a moving train -- I just couldn't jump off. Plus, it was kind of fun to pretend for awhile that I wasn't a patient.
I took an extra week off chemo during the holiday. I cannot believe how good I feel from just one more week off! I feel like I have more patience (though my husband disagrees, but whatever, I feel good). I got to visit family, go skiing with the kids, take the dog out for walks. It was great!
And, I was able to consult with another oncologist, this time at Dana Farber Cancer Institute. I had spoken to my regular oncologist about options for treatments -- should I continue on this every two week cycle? Should I stretch it to every three weeks since my numbers are good? Should I take a "chemo holiday" to let my body recover from all the chemo? What are the risks and benefits from any of these paths?
I always think that another smart mind is helpful, plus I'm interested in working with someone who views cancer more as a chronic condition than a fatal illness. So, I was lucky to be able to pull some strings (thanks, Julie!) and see Julie's oncologist at Dana Farber.
Dana Farber is a sobering place from the moment you pull up. I see weathered women in wheelchairs and on oxygen and cannot help but wonder if that will be me. I see children going in for treatments, and my heart breaks into a million pieces. And, while I like to deny it, I have to face the truth that I am part of this group.
Every single worker I encountered at DFCI is unfailingly nice and helpful. The valet patiently explained how their system works. It's no different than any other system, but he still explained it nicely and didn't treat us like we were idiots. The woman who checked me in didn't even imply that I was incompetent for forgetting my Dana Farber card; she simply smiled nicely and handed a new one to me. The person taking my vital signs was upbeat without being annoying.
The waiting rooms are PACKED. I guess that says something about cancer in our society. Still, the other patients were nice, and some of them were chatty. The Pittsburgher in me enjoyed that.
The doctor (we'll call him Jay) was running late, but I was glad to see him. He reviewed all my written records on-line through the inter-hospital system, and my rock-star radiologist husband had all my radiology studies organized on disks so that Jay could view them. Given the detail Jay recited about my case, I have to assume that my own oncologist keeps fantastic and detailed notes.
I forgot to ask my oncologist for my CEA number last week (the blood number that I track to get some indication of how the treatments are working). So, I said to Jay, "I think that my numbers look pretty good. Do you want to look at the trend?"
Then, while he was accessing the trends, looking at the screen, he said, "Your CEA looks good at 1.6."
Now, I never saw his eyes move from the screen, and I tried to keep a poker face, but he was paying close enough attention to my body language to then say, "You didn't know that, did you?"
I was very impressed.
Jay asked questions about how I am handling the current chemo treatments, both physically and emotionally, and did a quick physical exam. Then we had a conversation.
Jay was direct with me, and optimistic without sugarcoating things. He can talk in decision tress, which is how I think, so communication felt easy. Here is the basic bottom line, as he described it, or at least, how I heard it:
"Blood numbers look good, so it is possible, unlikely but anything is possible, so it is possible that all the cancer cells are gone. (BTW, I LOVED that he entertained that possibility at all. Loved it.) If that is the case, you are doing chemo needlessly.
Or, there could be some cancer cells in there that we can't see, hiding out. If so, you could continue to do chemo and try to knock those out.
Or you can take a break, let your body recover from chemo, and we could monitor you every two months. There were two studies done, basically showing that longevity is not impacted by a break like this, and overall quality of life is better.
Or, you could spread out the treatments to every three weeks, but I wouldn't recommend that, because we don't know if that is as effective as every two weeks (my current regimen). So you might get all the side effects of chemo with questionable benefit."
He did mention that I should get PET CTs more often than I am, and I take total blame for that. My oncologist also recommends them more frequently, but I have no more accessible veins in my arm and only have one or two accessible veins in my hand, so I'm very protective of those. Plus I hate getting all the radiation from that test.
So, here is my plan:
I will do chemo this week.
I will schedule a PET CT asap
Then, based on the results, take it from there.
Wish me luck! And a good chemo week. And most if all, thank you for hanging in there with me.
Two other quick notes.
1. Here is an article I wrote about treating cancer as a chronic condition:
Feel free to write comments there, even under a pseudonym or anonymously. It helps the owners of this blog, and it is interesting to me to read them as well. :-)
2. I'll close with this story: Last weekend, Tiron really wanted to have our caricatures done by this one artist guy. We don't know him at all (other than his work) and he knows nothing about my health.
On the drawing, above my head, he wrote, "Don't Stop Believing." I know that it is from Journey, but I took it to heart.
Thank you for continuing to believe.
Love, Marie
Tuesday, December 14, 2010
It was a good chemo week!
Thank you for all your emails, well wishes and prayers. I completely SAILED through the last chemo, physically. I have to admit that, while I am usually fairly upbeat, the past three weeks had me totally down in the dumps. It felt like there was sad news and endings everywhere I turned, and I kept relating all of it to me.
Some of the endings are cancer-related: A friend of a friend has been amazing at supporting me by being open about her path of living on chemo. I learned that she is no longer doing chemo, and not because she is miraculously cured. Though I've never met her personally, she really has been a rock for me through all of this.
Then, of course, there is Elizabeth Edwards. I felt that, if she could live forever, then I could, too. But then, she died. Guess I set myself for disappointment there.
I've been having really disturbing dreams about dying.
Even the songs on the radio seemed to reflect cancer and loss. I swear that every time I turned on the radio, I heard this Christmas song about a little boy trying to buy shoes for his dying mother who might not make it to Christmas Day. Gut wrenching sobs. Ugh.
As if those weren't enough, the yoga studio I attend is closing. On the surface, this doesn't sound like a big deal. I attend a weekly class, and lately, I've only been attending every other week. That computes to twice a month. Not often.
It's a small studio; I never counted the students, but there were maybe 18 max in each class. I first met Joseph, the teacher, during a time in my life when I really needed to laugh. You wouldn't think that one would find laughter in a yoga class, but I laughed through my entire first class with him, and the laughter pulled me back to the class again and again.
Many of the students were regulars, and despite my nine years there, I knew few of their last names or what they do outside of yoga. But when I got the message about the studio closing, my stomach sank. I realize that we've formed a community. I would miss Joseph and the entire community. I had no idea how important and strong this thread was in my life.
I was so tired of everything feeling like it was going away. And I was tired of feeling sad. Yes, I know, endings can make way for new beginnings. Sometimes it is hard to really believe that.
Still, we all go about each day, doing our thing, and I suddenly noticed that it was more important to me, personally, to support the decision of my instructor than to be sad about it. And, surprise: It felt better, too, like I was lifting my head up again, and able to look outside myself.
I have no clue what the future holds. I hope it holds more surprises like this, elements that light the way of how to feel better.
I suppose that our yoga community will stay in touch, at least for a time. I suspect that it will morph, as we all change and grow, but we are truly part of each other in ways I never knew, and it is nice to actually be aware of that.
I'm taking small steps forward. I'm setting up a yoga room in my house, or, more accurately, asking my father to do that while he visits this week. I've stopped listening to the radio for awhile. And I'm going to Dana Farber to get a different perspective on my health situation.
The laughter - well, some things are just so life-affirming, and laughter is one of them. That will have to stay.
I hope you can find real joy today, that makes you smile so big that you have to laugh, that something tickles you in such a way that you see the humor in it, and that you can feel the light shine right through you.
Chemo again today -- I'm writing this from my chair! Your prayers and good wishes are always welcome and help to make this all okay.
Love,
Marie
Some of the endings are cancer-related: A friend of a friend has been amazing at supporting me by being open about her path of living on chemo. I learned that she is no longer doing chemo, and not because she is miraculously cured. Though I've never met her personally, she really has been a rock for me through all of this.
Then, of course, there is Elizabeth Edwards. I felt that, if she could live forever, then I could, too. But then, she died. Guess I set myself for disappointment there.
I've been having really disturbing dreams about dying.
Even the songs on the radio seemed to reflect cancer and loss. I swear that every time I turned on the radio, I heard this Christmas song about a little boy trying to buy shoes for his dying mother who might not make it to Christmas Day. Gut wrenching sobs. Ugh.
As if those weren't enough, the yoga studio I attend is closing. On the surface, this doesn't sound like a big deal. I attend a weekly class, and lately, I've only been attending every other week. That computes to twice a month. Not often.
It's a small studio; I never counted the students, but there were maybe 18 max in each class. I first met Joseph, the teacher, during a time in my life when I really needed to laugh. You wouldn't think that one would find laughter in a yoga class, but I laughed through my entire first class with him, and the laughter pulled me back to the class again and again.
Many of the students were regulars, and despite my nine years there, I knew few of their last names or what they do outside of yoga. But when I got the message about the studio closing, my stomach sank. I realize that we've formed a community. I would miss Joseph and the entire community. I had no idea how important and strong this thread was in my life.
I was so tired of everything feeling like it was going away. And I was tired of feeling sad. Yes, I know, endings can make way for new beginnings. Sometimes it is hard to really believe that.
Still, we all go about each day, doing our thing, and I suddenly noticed that it was more important to me, personally, to support the decision of my instructor than to be sad about it. And, surprise: It felt better, too, like I was lifting my head up again, and able to look outside myself.
I have no clue what the future holds. I hope it holds more surprises like this, elements that light the way of how to feel better.
I suppose that our yoga community will stay in touch, at least for a time. I suspect that it will morph, as we all change and grow, but we are truly part of each other in ways I never knew, and it is nice to actually be aware of that.
I'm taking small steps forward. I'm setting up a yoga room in my house, or, more accurately, asking my father to do that while he visits this week. I've stopped listening to the radio for awhile. And I'm going to Dana Farber to get a different perspective on my health situation.
The laughter - well, some things are just so life-affirming, and laughter is one of them. That will have to stay.
I hope you can find real joy today, that makes you smile so big that you have to laugh, that something tickles you in such a way that you see the humor in it, and that you can feel the light shine right through you.
Chemo again today -- I'm writing this from my chair! Your prayers and good wishes are always welcome and help to make this all okay.
Love,
Marie
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