I'm so sorry I didn't get back to you sooner -- things have been crazy and I've just been getting used to all the news. Plus, my hip is hurting like crazy from my bone marrow biopsy, but more on that to follow.
Let's see....there is good news and there is "could be worse" news.
The good news is that it isn't pancreatic or any of the other scary cancers that were possible. Yay!
I guess that is also the "could be worse" news. There is a local recurrence (meaning, same place as last time), and it is treatable. Now that the dust has settled, I'm wondering why we only found it now; why, if it wasn't there before then why it grew so much in three months; and other scary things. I'm trying not to go there -- from what I've discerned, we don't know enough about cancer to know.
BUT, we do have a path forward. My week is filled with tests. Last Friday after the diagnosis, I had a bone marrow biopsy to see why my white count remains low. Not fun, but bearable.
Today (at 9 am after the holiday weekend), I had an appointment with the surgeon. She was supposed to biopsy this thing (it looks like 3 centimeters) by going in the out door (so to speak) but couldn't find it. Not the most fun way to spend my morning! The good news, though, is that the location of the tumor looks high enough in my colon that I hopefully will not need a bag after surgery.
Tomorrow, I have an appointment with my oncologist and the radiation oncologist. And on Friday, I have an MRI.
Funny story: I was supposed to have the MRI on my birthday. When I heard that, I thought, not my first choice, but okay. Then they said, "Do you need an anal probe?" and I thought, they have got to come up with a better idea for a birthday gift. Thankfully, I don't need an anal probe after all.
Back on topic: After all these tests, assuming that all is as suspected, I will! have six weeks of combined chemo and radiation. The chemo this time will be wearing the bag for five days a week, and I won't sit in the hospital for that other part of chemo. I'll go into the hospital every day for radiation. This is all to shrink the tumor.
Then I have six weeks off, for the chemo to continue to work and for my body to get strong for surgery. Then I have surgery to remove the tumor. While I am open, they will irradiate the area to basically kill every living cell in that part of my body.
I think that is it!
I'm a bit bummed about wearing that bag during the summer, I have to say, and am trying to stay focused on the fact that I can and don't need to be in the hospital to get chemo instead.
On Friday, a truck got stuck in front of our house, blocking our driveway. We couldn't get out for my doctor appointment so we borrowed my in-laws' car. After we got to the hospital, I ran into my oncologist before my appointment, and I saw in her eyes that the news wasn't great.
I supposed that, if they didn't find anything, I would still be worried, so maybe this is good!
Argh.
Love, Marie
Tuesday, May 26, 2009
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
Tuesday, May 5, 2009
Moderately high CEA
I'm bumming out.
One of my lovely oncologists called today. Sigh. My first impulse is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.
CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google; I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for). My doctors feel anything below 3.4 is good.
My white counts have gone low again, too.
I hung up the phone and cried.
Then, life continues. The phone rang again. I thought it was the doctor with more news. But, it was a friend. We hadn't talked in awhile and she was on her way to pick up her kids, with a few minutes to spare. When she innocently asked how I was doing, I burst into tears again. But I have to admit, it felt so good to talk with her. I am grateful that she acted on her inspiration to call me at that moment. It was just what I needed.
Connecting with Susan gave me energy to take the boys and do some retail therapy at Winston's Flowers. A few containers, plants, and flowers later, I felt a bit vindicated. The boys had a great time playing in the water fountains and were soaked through. They wanted to ride home naked. Fine with me.
When I drove up to the dock to load my purchases into the car, the saleswoman marveled at my calm. If only she knew.
I'm getting re-tested next week and hoping this is all just a fire drill.
One of my lovely oncologists called today. Sigh. My first impulse is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.
CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google; I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for). My doctors feel anything below 3.4 is good.
My white counts have gone low again, too.
I hung up the phone and cried.
Then, life continues. The phone rang again. I thought it was the doctor with more news. But, it was a friend. We hadn't talked in awhile and she was on her way to pick up her kids, with a few minutes to spare. When she innocently asked how I was doing, I burst into tears again. But I have to admit, it felt so good to talk with her. I am grateful that she acted on her inspiration to call me at that moment. It was just what I needed.
Connecting with Susan gave me energy to take the boys and do some retail therapy at Winston's Flowers. A few containers, plants, and flowers later, I felt a bit vindicated. The boys had a great time playing in the water fountains and were soaked through. They wanted to ride home naked. Fine with me.
When I drove up to the dock to load my purchases into the car, the saleswoman marveled at my calm. If only she knew.
I'm getting re-tested next week and hoping this is all just a fire drill.
Monday, May 4, 2009
CEA levels higher
Once again, a call directly from a doctor. Sigh. My first thought is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.
CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google, I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for).
I'm getting re-tested next week and hoping this is all just a fire drill.
CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google, I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for).
I'm getting re-tested next week and hoping this is all just a fire drill.
Wednesday, January 21, 2009
CT scan is clean!
Yesterday was the inauguration of Barack Obama, our new president and a symbol of hope and renewal for our country. The changeover occurs at noon, whether or not he has been sworn in.
Yesterday, I had my six-month check-up appointment with my oncologist to get the results of my CT scan. In the waiting room, I met a man, his wife and brother. The man was in the first third of his treatment for colon cancer. I could see myself in him, last year at this time, and I could feel the difference in myself from then till now.
At five minutes to 12, I sat with my husband and oncologist in her office. We commented on how we were missing the inauguration, then she told me that my CT scan showed no sign of cancer. YAY!
We talked about other things -- the results of my blood tests, my continued low white count, the little and thankfully unchanged things they see in my lungs and thyroid, and kids. Always kids -- a neutral topic that somehow connects some of us.
And then, we left, with a new lease on life and a new president!
Yesterday, I had my six-month check-up appointment with my oncologist to get the results of my CT scan. In the waiting room, I met a man, his wife and brother. The man was in the first third of his treatment for colon cancer. I could see myself in him, last year at this time, and I could feel the difference in myself from then till now.
At five minutes to 12, I sat with my husband and oncologist in her office. We commented on how we were missing the inauguration, then she told me that my CT scan showed no sign of cancer. YAY!
We talked about other things -- the results of my blood tests, my continued low white count, the little and thankfully unchanged things they see in my lungs and thyroid, and kids. Always kids -- a neutral topic that somehow connects some of us.
And then, we left, with a new lease on life and a new president!
Monday, January 12, 2009
Ms Radiation
My periodontist requested a full mouth x-ray. Just a routine thing -- they like to have new ones done every three to five years.
So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"
Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."
Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.
"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"
"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."
Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?
So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"
Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."
Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.
"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"
"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."
Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?
Friday, January 9, 2009
Anticipating my six month CT check-up
So, my CT scan is coming up. This is my six-month check-up after finishing chemo. I have the scan next Tuesday. Then the following Tuesday, Inauguration Day, I meet with my oncologist to get the results. In fact, my appointment is at 11:30 am, just about the time of the inauguration! I hope this is the beginning of a wonderful new phase for all of us.
This weekend, I started to obsessively plan trips. I'm not someone with wanderlust, so this isn't normal behavior for me. After recording every day off, long weekend and school vacation between now and April, I became a woman obsessed with planning places to go and things to do. I specifically wanted places that were fun, interesting, different, and potentially non-refundable. On top of that, I found a blank spot in my schedule and committed to taking a course this semester. Because, if I plan these things, there is a future, right?
I'm realizing that planning these trips is my coping mechanism for dealing with the stress of any upcoming tests. While I can often pretend that cancer is behind me, the next few weeks contain vivid reminders that I live under a bit of a cloud. There is my CT scan, and the follow-up appointment for that. Then, my mammogram (yup, still doing those!) and my follow-up for that. The good news is that these are all in a span of a few weeks, then it is (fingers crossed, lotsa prayers) back to life as usual.
But for now, I'm trying to drink lots of water so that they can more easily find a vein to get blood out, contrast in. I'm trying to relax. And I'm eating lots of chocolate!
This weekend, I started to obsessively plan trips. I'm not someone with wanderlust, so this isn't normal behavior for me. After recording every day off, long weekend and school vacation between now and April, I became a woman obsessed with planning places to go and things to do. I specifically wanted places that were fun, interesting, different, and potentially non-refundable. On top of that, I found a blank spot in my schedule and committed to taking a course this semester. Because, if I plan these things, there is a future, right?
I'm realizing that planning these trips is my coping mechanism for dealing with the stress of any upcoming tests. While I can often pretend that cancer is behind me, the next few weeks contain vivid reminders that I live under a bit of a cloud. There is my CT scan, and the follow-up appointment for that. Then, my mammogram (yup, still doing those!) and my follow-up for that. The good news is that these are all in a span of a few weeks, then it is (fingers crossed, lotsa prayers) back to life as usual.
But for now, I'm trying to drink lots of water so that they can more easily find a vein to get blood out, contrast in. I'm trying to relax. And I'm eating lots of chocolate!
Subscribe to:
Posts (Atom)