First, the good news. There is no sign of new cancer in my abdomen (and this time the radiologist got a good look at the site of the surgery and my cancerous bile duct).
Next, the not-so-clear news. The spot in my abdomen has grown. I could see it on the CT scans that I spent hours looking at over the weekend. The radiologist didn't even notice it (it's not "in" my abdomen, but just under the skin by my incision scar, which is why I can feel it so readily). The new oncologist, Dr. J, said that it could be a "granuloma. . . . (something)" and not an "escaped" cancer cell from the surgery that's been growing. I don't have a good feeling about it, and I want it out!
The good news about the "spot." Dr. M, the surgeon, has agreed to cut it out, and left an email message for Dr. J to that effect. I haven't talked to him about how soon we can schedule it, but I'm hoping it will be within a few weeks.
The not-great news about my tumor marker. It's gone up. However, it hasn't gone up much; from 70 to about 134 since September. Folks who get really sick from gallbladder cancer have numbers in the thousands. The oncologist wasn't particularly worried, and said that it is "indicative," but not "diagnostic." The best possible scenario would be that the "spot" is removed, is escaped cancer cells that have been growing, and my tumor marker goes down afterwards.
The bad news. I still have gallbladder cancer. Bad news, indeed, but not "new" news.
The good news. It's almost six months since my diagnosis, and I am still alive. I continue to feel good, and to enjoy my life, and very much to appreciate the gift of life.
The really good news. I am feeling good, feeling grateful, feeling loving as I look forward to celebrating Thanksgiving tomorrow and this weekend with family and friends. And I know that I haven't waited until this one day in a year to express my love and gratitude to those in my life who love, support, and care for me. Happy Thanksgiving!
Showing posts with label oncologist. Show all posts
Showing posts with label oncologist. Show all posts
Wednesday, November 22, 2006
Sunday, November 19, 2006
More waiting, not much information . . .
I wasn't going to post anything until I meet with the oncologist, Dr. J, on Wednesday, but I know that many of you who read this are waiting for news.
On Friday, I had the CT scan and gave blood. I drove in on a rainy morning, arrived by 7:30, and was done by 10:00. I did discover that I could get a copy of the CT scan on CD (Thank you again, Woody, for letting me know that it's possible!), and I had them make a CD of my most recent scan, and the other three I've had done this year.
So, briefly, the surgeon, Dr. M, did call me on Friday night to say that he didn't see anything troublesome in my liver, but that, below that area, it was hard to read the scan. So, he's guardedly optimistic, but feels that he needs to see what the radiologist has to say in the written report. He could see the spot in my abdomen on my surgical scar, and said it looked troublesome. We're hoping that the radiologist report is in tomorrow, and he can call me, and have his secretary fax me the report. Still, he's not the oncologist, and that's where we'd be talking full interpretation and possible treatment.
On Friday afternoon and Saturday, I spent many hours learning to use the medical scan-reading software and reading my scans. Finally figured out a lot of it, although I don't understand a lot of what I see. Having the earlier scans, where no one was worried about the results, and the radiologist's reports from those scans, made it easier.
So, no real answers, and still lots of questions. Guardedly optimistic. I will post something on Wednesday night, Nov. 22, after we see the oncologist, even if it's a brief message with the outcome of the visit.
On Friday, I had the CT scan and gave blood. I drove in on a rainy morning, arrived by 7:30, and was done by 10:00. I did discover that I could get a copy of the CT scan on CD (Thank you again, Woody, for letting me know that it's possible!), and I had them make a CD of my most recent scan, and the other three I've had done this year.
So, briefly, the surgeon, Dr. M, did call me on Friday night to say that he didn't see anything troublesome in my liver, but that, below that area, it was hard to read the scan. So, he's guardedly optimistic, but feels that he needs to see what the radiologist has to say in the written report. He could see the spot in my abdomen on my surgical scar, and said it looked troublesome. We're hoping that the radiologist report is in tomorrow, and he can call me, and have his secretary fax me the report. Still, he's not the oncologist, and that's where we'd be talking full interpretation and possible treatment.
On Friday afternoon and Saturday, I spent many hours learning to use the medical scan-reading software and reading my scans. Finally figured out a lot of it, although I don't understand a lot of what I see. Having the earlier scans, where no one was worried about the results, and the radiologist's reports from those scans, made it easier.
So, no real answers, and still lots of questions. Guardedly optimistic. I will post something on Wednesday night, Nov. 22, after we see the oncologist, even if it's a brief message with the outcome of the visit.
Friday, November 03, 2006
Just Under the Surface
I lost it today. Had a phone call from the office manager for the new oncologist. (Did I mention that I HATE changing doctors?) It turns out that he is not willing to see me on the same day that I have the CT scan, and in fact, wants to wait until the radiology report on the scan is available. Yeeeks! That is at least three-four days . . . I've been feeling "normal" lately, feeling that I'm handling everything well, and the conversation with the new oncologist's assistant sent me into a tailspin.
So, my CT scan is still scheduled for Nov. 17, but I don't see the oncologist, Dr. J, until the following Wednesday, Nov. 22. That's right, the day before Thanksgiving. His assistant tried to schedule the appointment for the day after Thanksgiving, and I said I simply could not wait that long. "This may be my last Thanksgiving," I said to her. "I can't spend the day in total anxiety about the scan results." I haven't spoken with her before, and felt incredibly frustrated with the conversation, and with the fact that the folks in charge couldn't have coordinated the transition better. I have had the two appointments for at least a month; couldn't they have let me know sooner about the new plan? Couldn't they have let me know so that all of this wouldn't be happening just as Thanksgiving arrives?
For the last three weeks, I've been teaching, and advising students as they plan their courses for next semester. I've been talking with them about graduating next May, or December in a year, or even in four years. I've done it without thinking every single time that I hope I'm alive when this future event happens. I've been feeling good, feeling "normal" (in the new normal sense of the word), and then today I was right back in my fear and anxiety.
I've read in Leroy's blog and the blogs of others with cancer about the difficulty of waiting for test results. I experienced it myself last July when I had to wait a day and a half to talk with the oncologist after my CT, and I felt anxiety in my body like I had never, never experienced before. Then Dr. S (my former oncologist) said he could see me the same day, and that felt so much easier, more manageable. Now I'm back to the waiting, knowing already now, weeks away, that I'll need things to distract me from my anxiety about the test results.
So, all of this fear and anxiety under the surface. The new normal for me. Things seem so fine, feel good in so many ways, and then the uncertainty of my future jumps up again and smacks me in the face. And I want to say to all of you who love me and are reading this that I am feeling good. My energy is good, my body feels as if it continues, still, to heal from the surgery, but I can walk faster, longer, better than I could two months ago, and I don't get tired so fast. The little spot in my abdomen that I talked with the surgeon about a few weeks ago continues to trouble me at times, but I feel good.
It's just this pesky uncertainty, the not knowing, the not knowing what the cancer is doing. I continue to visualize the cancer dancing, skipping, flowing, moving with whatever locomotion it wants, to the beautiful sunset. What does the future hold? What wiil be the outcome of this next scan? I don't know.
So, my CT scan is still scheduled for Nov. 17, but I don't see the oncologist, Dr. J, until the following Wednesday, Nov. 22. That's right, the day before Thanksgiving. His assistant tried to schedule the appointment for the day after Thanksgiving, and I said I simply could not wait that long. "This may be my last Thanksgiving," I said to her. "I can't spend the day in total anxiety about the scan results." I haven't spoken with her before, and felt incredibly frustrated with the conversation, and with the fact that the folks in charge couldn't have coordinated the transition better. I have had the two appointments for at least a month; couldn't they have let me know sooner about the new plan? Couldn't they have let me know so that all of this wouldn't be happening just as Thanksgiving arrives?
For the last three weeks, I've been teaching, and advising students as they plan their courses for next semester. I've been talking with them about graduating next May, or December in a year, or even in four years. I've done it without thinking every single time that I hope I'm alive when this future event happens. I've been feeling good, feeling "normal" (in the new normal sense of the word), and then today I was right back in my fear and anxiety.
I've read in Leroy's blog and the blogs of others with cancer about the difficulty of waiting for test results. I experienced it myself last July when I had to wait a day and a half to talk with the oncologist after my CT, and I felt anxiety in my body like I had never, never experienced before. Then Dr. S (my former oncologist) said he could see me the same day, and that felt so much easier, more manageable. Now I'm back to the waiting, knowing already now, weeks away, that I'll need things to distract me from my anxiety about the test results.
So, all of this fear and anxiety under the surface. The new normal for me. Things seem so fine, feel good in so many ways, and then the uncertainty of my future jumps up again and smacks me in the face. And I want to say to all of you who love me and are reading this that I am feeling good. My energy is good, my body feels as if it continues, still, to heal from the surgery, but I can walk faster, longer, better than I could two months ago, and I don't get tired so fast. The little spot in my abdomen that I talked with the surgeon about a few weeks ago continues to trouble me at times, but I feel good.
It's just this pesky uncertainty, the not knowing, the not knowing what the cancer is doing. I continue to visualize the cancer dancing, skipping, flowing, moving with whatever locomotion it wants, to the beautiful sunset. What does the future hold? What wiil be the outcome of this next scan? I don't know.
Friday, September 22, 2006
The Amusement Park - Not!
Since many/most of you reading this blog are friends and family, you already know this, but I need to write about it. Cancer affects far more than the person diagnosed, and even that person's immediate family and caregivers. I suppose that it's true of other acute and/or chronic illnesses, but I haven't had any of those diseases. I have cancer, and it has turned my life, my family's life, and those of many of my friends, upside down. Inside out. Backwards. With a stomach-churning drop in between. A modern day roller coaster ride.
I've written a lot about the impact of the diagnosis on me since I began this blog, not quite two months ago. I haven't written directly about the impact on my family. My immediate family consists of Patty who is my life partner, lesbian lover, Massachusetts spouse, and our two children, Lucy, age 10 and Nathaniel, age 8. Although I turned 59 this summer, I do have a young family, and it has been especially painful to contemplate not being here with them as they grow into adolescence and adulthood. Patty is my anchor, and the one who makes me laugh.
The first time we saw the oncologist, last June, a week past surgery, we waited a long time for the doctor to come into the room, and I was feeling incredibly anxious. "Make me laugh," I said to her, and she did. It was cancer humor, grim humor, very funny to us at the time, but not so good in translation, so I won't try to recreate it. At the appointment, the doctor stressed the importance of starting treatment as soon as possible (although not until at least a month had passed post surgery). After, I would double check my recollection of something he said against Patty's memory. We had taken a few notes, but I wondered about tone of voice, extra meaning, also.
In July, when we saw the oncologist a second time, he said that I looked good, didn't seem to be jaundiced, and probably wouldn't need treatment. We talked for a while about my diagnosis and his proposal for a clinical trial when treatment is needed, and, toward the end, I turned to Patty and asked if she had any questions. "Yes," she said. "Where is the urgency? We came back early from a planned 5 1/2 week trip out west because you said she had to start treatment right away! We could be in Yosemite National Park right now!" I appreciated her directness! He had the grace to admit that his earlier sense of urgency was unnecessary, and to apologize. "Things have changed," he said, because I was doing so well post-diagnosis.
After that visit, we talked about dealing with the slowing down of the pace of the disease from the initial diagnosis, and our new roles. Patty commented that when her job was to visit me daily in the hospital, and then to support my recovery when I returned home, she knew what to do. Now, just waiting, what was her job, she wanted to know. I confessed my uncertainty about this unfamiliar terrain, but replied also that her job was "to love me." "I am," she said, "but I still feel like I should be doing something."
This past Monday, Patty sat with me in the waiting room for the CT scan, watching me drink the barium, then leave for the scan. After, we went upstairs to see the oncologist. He was nice enough to actually look at a few pictures I'd brought of our trip out west, and to make small talk. I wrote in my last post that his review of the scan indicated no need for treatment now. When we left, I was relieved and happy, and so was Patty, but she was also feeling, she said, like she was riding a tilt-a-whirl at the amusement park. First we prepare for this, then that. Something is different, and we are up, or we are down. The shifts themselves are exhausting, even when the news is good.
As we talked this week, we finally found an image that works for where we are now. "I feel as if I've been sprinting and preparing to keep sprinting. It's really tiring." Patty said. "Things have all happened so fast. Now, almost four months post your diagnosis, I guess I need to think of this as a marathon, not a sprint any longer."
Sports metaphors aside, as I drafted this post and talked with Patty about how to represent her role in all of this, we noted with irony how often images from the amusement park speak to our experiences. The images of roller coaster rides, the tilt a whirl, the"mad teacups," even the merry go round, keep coming to us. Why do we in our culture like these rides? Is it a chance to face our fear and conquer it? Well, the amusement park assortment of rides that makes up cancer definitely brings up our fear, in a real and palpable way. Still, I wish we could get off the Cancer Ride.
I've written a lot about the impact of the diagnosis on me since I began this blog, not quite two months ago. I haven't written directly about the impact on my family. My immediate family consists of Patty who is my life partner, lesbian lover, Massachusetts spouse, and our two children, Lucy, age 10 and Nathaniel, age 8. Although I turned 59 this summer, I do have a young family, and it has been especially painful to contemplate not being here with them as they grow into adolescence and adulthood. Patty is my anchor, and the one who makes me laugh.
The first time we saw the oncologist, last June, a week past surgery, we waited a long time for the doctor to come into the room, and I was feeling incredibly anxious. "Make me laugh," I said to her, and she did. It was cancer humor, grim humor, very funny to us at the time, but not so good in translation, so I won't try to recreate it. At the appointment, the doctor stressed the importance of starting treatment as soon as possible (although not until at least a month had passed post surgery). After, I would double check my recollection of something he said against Patty's memory. We had taken a few notes, but I wondered about tone of voice, extra meaning, also.
In July, when we saw the oncologist a second time, he said that I looked good, didn't seem to be jaundiced, and probably wouldn't need treatment. We talked for a while about my diagnosis and his proposal for a clinical trial when treatment is needed, and, toward the end, I turned to Patty and asked if she had any questions. "Yes," she said. "Where is the urgency? We came back early from a planned 5 1/2 week trip out west because you said she had to start treatment right away! We could be in Yosemite National Park right now!" I appreciated her directness! He had the grace to admit that his earlier sense of urgency was unnecessary, and to apologize. "Things have changed," he said, because I was doing so well post-diagnosis.
After that visit, we talked about dealing with the slowing down of the pace of the disease from the initial diagnosis, and our new roles. Patty commented that when her job was to visit me daily in the hospital, and then to support my recovery when I returned home, she knew what to do. Now, just waiting, what was her job, she wanted to know. I confessed my uncertainty about this unfamiliar terrain, but replied also that her job was "to love me." "I am," she said, "but I still feel like I should be doing something."
This past Monday, Patty sat with me in the waiting room for the CT scan, watching me drink the barium, then leave for the scan. After, we went upstairs to see the oncologist. He was nice enough to actually look at a few pictures I'd brought of our trip out west, and to make small talk. I wrote in my last post that his review of the scan indicated no need for treatment now. When we left, I was relieved and happy, and so was Patty, but she was also feeling, she said, like she was riding a tilt-a-whirl at the amusement park. First we prepare for this, then that. Something is different, and we are up, or we are down. The shifts themselves are exhausting, even when the news is good.
As we talked this week, we finally found an image that works for where we are now. "I feel as if I've been sprinting and preparing to keep sprinting. It's really tiring." Patty said. "Things have all happened so fast. Now, almost four months post your diagnosis, I guess I need to think of this as a marathon, not a sprint any longer."
Sports metaphors aside, as I drafted this post and talked with Patty about how to represent her role in all of this, we noted with irony how often images from the amusement park speak to our experiences. The images of roller coaster rides, the tilt a whirl, the"mad teacups," even the merry go round, keep coming to us. Why do we in our culture like these rides? Is it a chance to face our fear and conquer it? Well, the amusement park assortment of rides that makes up cancer definitely brings up our fear, in a real and palpable way. Still, I wish we could get off the Cancer Ride.
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