At the Harmony Hill workshop, Phil made a comment to our group that resonated for me. He said he thought the primary thing that you fight as a cancer patient is fear. I agree that that’s one of your chief challenges. The biggest fear is that your future could disappear. Other fears pile on: fear that your condition will be worse than you think it is; fear that your treatment will not turn things around; fear that you will not be able to face the inevitable bumps in the road as they come along; fear of losing your self-image, your ability to do the things you enjoy, your ability to eat, take care of yourself and to walk proudly….or even to walk at all. Fear that you will not be up to coping with the things that will come at you. Fear that your loved ones will have to change their life plans because of you. Fear that you won’t be there to see momentous occasions like your children finishing college, getting married, or having grandchildren. Fear of pain, of disfigurement, of having your confidence shaken more than you can recover from, of what you are doing to yourself and what is being done to you.
For me these fears are not constant—they’re episodic, driven by the circumstances I happen to be facing. My current fear is looming on Tuesday—the beginning of my chemotherapy treatment. It’s actually a collection of big and little fears. The big one is not knowing what damage I am about to do to my body, in the hope of buying some extra insurance that I might survive this cancer. The smaller fears have to do with not knowing how my body will react to the chemical, not being sure just how incapacitated I might be, or how much I am going to hurt in different ways. And a smaller fear that keeps nagging at me has to do with the minor surgery that will occur first thing Tuesday morning, to put in the port that will be used to give me the IV infusions—another invasion of my body, just when I have healed myself from the hysterectomy.
So how do you survive all this fear? I do it by getting information. I ask people who’ve been through the same procedure how it felt and how it is working. I check out the Internet to get information on the chemicals and procedures. I ask my health care professionals to tell me exactly what the bad things are that can happen as side effects of these chemicals, how much the body can recover, and how long that takes. In all I am seeking some reassurance that the course I am taking is a reasonable one. It is certainly the one my health care providers and most of my family think I should take. But in the end, it’s my body, and only I can make the decision. And I have to live with the results of that decision.
I also distract myself by having lots of activities to do, and making plans for good things I want to be doing. I work on the schedule for our summer cruising, watch movies, pick up a new book to read, chip away at tasks for my leadership group. I am looking forward to a long weekend at our rowing camp in Canada (next weekend), and to my daughter’s visit right after that. I am scheduling haircuts, trying on wigs and making lists like mad. In essence, I am making sure that I have a good life to enjoy even as I head into this dark tunnel where I’m not sure how it will look at the other end.
Those are my fears, big and little. Thank goodness they do not stay in the front of my mind all the time. In fact, they’re fairly hidden much of the time. They do tend to surface in my dreams, I notice. So I know they are there, and to keep my mental health, I try to acknowledge them and let them know I recognize what they are. And then move on.
Saturday, May 31, 2008
Wednesday, May 28, 2008
Memorial Day Weekend - The Eglon Walk
For the second year in a row, Guy and his girlfriend Joahnna managed to make it to Seattle for the Memorial Day weekend. And for the second year they got to join the friends, neighbors and family of Marty & Sandy Godsil who hold a gathering at their beach home in Kingston. The big feature of this gathering is the walk along the beach from their house to a little park at Eglon—about 4 miles each way. The tide was right this year to allow us to do the walk (it has to be low enough to help us make our way around varying sets of logs and rocks that otherwise form a barrier). This year was the first time I had made it all the way to Eglon and back (Phil dropped out about ¼ of the way into the first leg of the journey). Guy and Joahnna also managed that feat, so our family did pretty well. Our featured picture is of the 3 of us by the Eglon park sign, to document the fact that we actually made it.
I wasn’t sure my recently recovered groin was going to make it, but I just kept walking along slowly and it actually felt better after the experience. The rest of my body was quite tuckered, however (along with the bodies of all the other walkers). So the delicious hamburger dinner that followed was especially welcome, and well earned, we felt.
The other treat of the weekend was discovering that Joahnna gives absolutely great massages—something she learned to do when she attended her college dance program. Monday morning she loosened up all the tight muscles I had acquired from the beach walk and a lot of other activities. It was heavenly! Thank you Joahnna!
Here’s a nice shot of Guy and Joahnna, the masseuse, by a particularly interesting root ball on the beach.
Thursday, May 22, 2008
Ready to Roll
At last we have a plan. The last two days have been a flurry of doctor’s appointments. Fortunately, the leanings of all participants have been roughly in the same direction, and Group Health (which is both my health care provider and my insurance) supports the plan. I will be getting what’s called a “sandwich.” That means that the total course of 6 rounds of chemotherapy that all three oncologists want me to have will be divided into two rounds of 3, and in the middle I will get 5 weeks of radiation.
The chemotherapy is there to chase little cancer cells that might be hovering in my system, thinking about migrating (or perhaps already started on their trip). It addresses the concern that frequently this cancer pops up in other places in the body than the place it first showed. Also the fact that even though everything appeared clean, cancer cells can be small enough or sparsely distributed enough that they don’t show up on any of the scans or washes or other tests. This is insurance, and there is some evidence that it may contribute to better survival rates.
The radiation was recommended primarily by the UW oncologist, because the other thing this cancer tends to do is reappear in the abdomen. He is concerned at the very small margins between the tumor and surrounding tissues and the chance that something escaped that we didn’t detect. So even though there is no statistical evidence that radiation increases overall survival rates, it does seem to cut down on the incidence of cancer returning in the abdomen. That’s the reason for the center of the sandwich.
The remaining part of the sandwich (second half of the chemo) is done if I have tolerated the first half well, and come through the radiation reasonably intact. Apparently sandwiches are becoming more common as a treatment protocol.
So there you have it. All are still agreed that they really don’t know exactly what kind of uterine sarcoma I have. And that I won’t find any data to support one kind of treatment over another. They all seem to think it looks more like a leiomyosarcoma than the other types of uterine sarcomas. As you can probably see, it’s a mouthful, and a challenge to learn how to spell, let alone say.
I also saw my surgeon today to check out the cause of the groin pain. She’s shifted the name of the little sac holding fluid from a seroma to a lymphocyst (which means there might be slightly different ingredients in it) but agreed that it is located in the region where she took some of the lymph nodes and is not an unexpected result. Since I am currently not experiencing pain, she recommended doing nothing. If the pain returns, we can consider other possibilities. It will get tracked through the CT scans that I have as I go along through my treatment.
I am greatly relieved to have a plan, to be taking some action, and to find that everyone has lined up to support the treatment recommended by the UW oncologist. If there could be a happy camper about to embark on chemotherapy, I’m it!
The chemotherapy is there to chase little cancer cells that might be hovering in my system, thinking about migrating (or perhaps already started on their trip). It addresses the concern that frequently this cancer pops up in other places in the body than the place it first showed. Also the fact that even though everything appeared clean, cancer cells can be small enough or sparsely distributed enough that they don’t show up on any of the scans or washes or other tests. This is insurance, and there is some evidence that it may contribute to better survival rates.
The radiation was recommended primarily by the UW oncologist, because the other thing this cancer tends to do is reappear in the abdomen. He is concerned at the very small margins between the tumor and surrounding tissues and the chance that something escaped that we didn’t detect. So even though there is no statistical evidence that radiation increases overall survival rates, it does seem to cut down on the incidence of cancer returning in the abdomen. That’s the reason for the center of the sandwich.
The remaining part of the sandwich (second half of the chemo) is done if I have tolerated the first half well, and come through the radiation reasonably intact. Apparently sandwiches are becoming more common as a treatment protocol.
So there you have it. All are still agreed that they really don’t know exactly what kind of uterine sarcoma I have. And that I won’t find any data to support one kind of treatment over another. They all seem to think it looks more like a leiomyosarcoma than the other types of uterine sarcomas. As you can probably see, it’s a mouthful, and a challenge to learn how to spell, let alone say.
I also saw my surgeon today to check out the cause of the groin pain. She’s shifted the name of the little sac holding fluid from a seroma to a lymphocyst (which means there might be slightly different ingredients in it) but agreed that it is located in the region where she took some of the lymph nodes and is not an unexpected result. Since I am currently not experiencing pain, she recommended doing nothing. If the pain returns, we can consider other possibilities. It will get tracked through the CT scans that I have as I go along through my treatment.
I am greatly relieved to have a plan, to be taking some action, and to find that everyone has lined up to support the treatment recommended by the UW oncologist. If there could be a happy camper about to embark on chemotherapy, I’m it!
Tuesday, May 20, 2008
Indomitable Spirits
First, for those of you I worried with my last posting, I am better. Yesterday the pain decided to abate and so far walking and even a session of yoga this morning have not brought back any episodes of the groin pain. I also checked out seroma on the Internet—the thing my oncologist suggested this might be. Looks like it’s a collection of fluid that can occur after surgery and usually dissipates over time. I have an appointment with my surgeon on Thursday, by which time I’m hoping I will simply be asking if she thinks that’s what it was, and if there’s anything I might do to avoid getting another one.
The big event to report on is that Phil and I spent Friday through Sunday at the Harmony Hill Cancer Retreat Center—the same place I went to a one-day workshop a few weeks ago. There were 20 people attending, 12 of whom were dealing with cancer and 8 of whom were spouses or friends supporting those with cancer. Phil was also one of several of the support people who had had cancer themselves but their cancer was in remission, or “gone.” We were fortunate that it was a superb weekend of weather, so we enjoyed views of the Olympics the entire time. Here are a couple of shots that show that.
For me, the experience of hearing the other participants’ stories was similar to the one-day workshop. My diagnosis was again the newest in the group, though time does not tell all. The next most recent diagnosis was for a woman who learned in December that she had inoperable and metastasized cancer, and a projected “not that long” to live. Obviously the two of us are in very different places. I was struck again by both the pain, sorrow and loss people are dealing with and their indomitable spirit and will to live, and live well, with laughter and love surrounding them.
There were two significant changes to the experience from last time. The pace of the three days was very measured, which in itself was a learning experience for someone who lives her life at a much faster pace. However, it suited me well given the pain I continued to experience from walking and movement other than sitting and lying down.
The second big change was having Phil with me, and learning more about what he is thinking through his interactions in the group. He did admirably well for someone for whom this kind of experience is way down the list of things he wants to do. Most of our small sessions we participated in as a couple. One of the sessions grouped all the cancer patients and all the caregivers together, so we could each talk about the experience of being in each of those roles, without offending the people in the opposite role. Instructive for me, mostly from listening to the struggles of the cancer patients who were dealing with imminent terminal illness. I tucked away a number of thoughts just in case I need them someday.
Another amazing experience for this compulsive notetaker is that I took very few notes. Mostly I just listened and absorbed. Every once in a while someone would mention a resource that I wanted to capture, but most of the time the stories were the focus. And these I will simply carry with me.
The nitty gritty for this week? I have a line of appointments: UW oncologist on Wednesday, Surgeon Thursday, Group Health oncologist also on Thursday, and MRI on Friday. I can already feel the $20 co-pays rolling out of my pocket! Significantly, though, I have not yet received any kind of bill for all this care (except for my Chinese medicine specialist, who is not covered).
I’ll post more as I learn more.
The big event to report on is that Phil and I spent Friday through Sunday at the Harmony Hill Cancer Retreat Center—the same place I went to a one-day workshop a few weeks ago. There were 20 people attending, 12 of whom were dealing with cancer and 8 of whom were spouses or friends supporting those with cancer. Phil was also one of several of the support people who had had cancer themselves but their cancer was in remission, or “gone.” We were fortunate that it was a superb weekend of weather, so we enjoyed views of the Olympics the entire time. Here are a couple of shots that show that.
For me, the experience of hearing the other participants’ stories was similar to the one-day workshop. My diagnosis was again the newest in the group, though time does not tell all. The next most recent diagnosis was for a woman who learned in December that she had inoperable and metastasized cancer, and a projected “not that long” to live. Obviously the two of us are in very different places. I was struck again by both the pain, sorrow and loss people are dealing with and their indomitable spirit and will to live, and live well, with laughter and love surrounding them.
There were two significant changes to the experience from last time. The pace of the three days was very measured, which in itself was a learning experience for someone who lives her life at a much faster pace. However, it suited me well given the pain I continued to experience from walking and movement other than sitting and lying down.
The second big change was having Phil with me, and learning more about what he is thinking through his interactions in the group. He did admirably well for someone for whom this kind of experience is way down the list of things he wants to do. Most of our small sessions we participated in as a couple. One of the sessions grouped all the cancer patients and all the caregivers together, so we could each talk about the experience of being in each of those roles, without offending the people in the opposite role. Instructive for me, mostly from listening to the struggles of the cancer patients who were dealing with imminent terminal illness. I tucked away a number of thoughts just in case I need them someday.
Another amazing experience for this compulsive notetaker is that I took very few notes. Mostly I just listened and absorbed. Every once in a while someone would mention a resource that I wanted to capture, but most of the time the stories were the focus. And these I will simply carry with me.
The nitty gritty for this week? I have a line of appointments: UW oncologist on Wednesday, Surgeon Thursday, Group Health oncologist also on Thursday, and MRI on Friday. I can already feel the $20 co-pays rolling out of my pocket! Significantly, though, I have not yet received any kind of bill for all this care (except for my Chinese medicine specialist, who is not covered).
I’ll post more as I learn more.
Thursday, May 15, 2008
Depths and Heights
First – the news I’ve been waiting for. My appointment with the 2nd opinion UW oncologist has been scheduled, finally. I’ll meet with him next Wednesday afternoon. In the interim, more small dramas have been unfolding for me.
Working with any major health challenge is never the straight road you hope for: diagnosis, treatment and a steady progression to “cured.” As with most illnesses, you suddenly become acutely sensitive to any minor change in your body, wondering immediately what it might portend. Is it related to the core illness? Is it something altogether different? Should you pay attention to it, or should you let it ride and see if it resolves itself? Are you a sissy, giving in to every little variant in symptom, or are you smart, noticing and following up on changes that should be addressed?
I’ve been working with one of those symptoms since Tuesday evening. I had a minor twinge in my left groin as I went to bed, and wondered whether I’d done something to myself during my morning yoga and workout sessions. Wednesday morning I got up and went rowing in a double, proudly lifting my end of the double without any undue strain. Once in the water and rowing, however, I slowly became aware of increasing discomfort and then downright pain in my left groin. Finally, about halfway to our normal turnaround point, I told my partner that I was going to have to cut our row short. By the time we got back to the dock, I was having a hard time walking, and my partner thankfully got someone else to help put the boat back in its rack. Depressing the clutch on the way home didn’t improve things much, and by the time I got home I was seriously hurting.
After sitting for a while, the pain subsided, so I headed out to a dental appointment in the U District. Ahh, that clutch again. Managed to get there, and the pain disappeared while in the dentist’s chair, but going back home brought it back. When I got home I took a couple of Alleve, but wasn’t sure they did anything. Sitting still did seem to reduce it.
Off and on I went through the day, slowly discovering that clutch use, walking more than 1 block, and going up and down the stairs all brought on quite severe pain, which Alleve and Ibuprofen didn’t seem to do much to help. On Thursday I decided to skip driving to my gym and asked Phil to drive me to do my grocery shopping. Off and on today I alternated between doing fine and bending over with pain. Much worse pain than anything I had with surgery. And of course speculating all the while—could this be the potential by-product of lymph node removal that my surgeon had mentioned? Could I have pulled something unknowingly? Is it something else? Should I ride it out over the weekend and see if it will improve? Should I check in with my surgeon, or with someone else at Group Health?
Just after I finally called my surgeon’s office to leave a message asking them if they could give me any wisdom about how I should proceed, I got a call from my Group Health oncologist. A couple of suspicious things had shown up on the CT scan done on Tuesday that might represent spread of the cancer. One of them was a swelling in the left groin. Had I noticed anything? Had I indeed??? He wanted me to come in immediately so he could feel in that region, and figure out if they needed to do a biopsy. My worry level soared, imagining all sorts of scenarios from additional surgery to immediately beginning radiation or chemo.
I survived one more driving trip with the clutch (Group Health is just about 10 minutes away). My oncologist palpated my groin region and did not find anything, nor was anything painful to touch. Since his reaction had been based on the lab report of the scan, rather than his own viewing, he looked at the scan more carefully and concluded that since the internal swelling showing on the scan was in the area of my surgery, it might well be an after-effect of the surgery and probably did not represent metastasis of the cancer. I peeled my turmoiled emotions off the ceiling and settled down to talk with him about next steps—both to check out the suspicions noted on the scan AND to deal with the pain I’ve been experiencing. For the pain, he suggested I proceed with my surgeon to see what thoughts she has. For the general suspicions, he has scheduled me for an MRI next week, to provide a further check.
I’ve settled back down and am planning to spend as much time as possible sitting over the next three days, limiting my walking and letting Phil do the driving, to see if I can reduce the amount of pain. The retreat should make that easy to do. Hopefully by Monday I’ll get some advice from the surgeon’s office and see if this might resolve itself or needs an intervention.
What depths and heights you can experience in a few short hours!
Working with any major health challenge is never the straight road you hope for: diagnosis, treatment and a steady progression to “cured.” As with most illnesses, you suddenly become acutely sensitive to any minor change in your body, wondering immediately what it might portend. Is it related to the core illness? Is it something altogether different? Should you pay attention to it, or should you let it ride and see if it resolves itself? Are you a sissy, giving in to every little variant in symptom, or are you smart, noticing and following up on changes that should be addressed?
I’ve been working with one of those symptoms since Tuesday evening. I had a minor twinge in my left groin as I went to bed, and wondered whether I’d done something to myself during my morning yoga and workout sessions. Wednesday morning I got up and went rowing in a double, proudly lifting my end of the double without any undue strain. Once in the water and rowing, however, I slowly became aware of increasing discomfort and then downright pain in my left groin. Finally, about halfway to our normal turnaround point, I told my partner that I was going to have to cut our row short. By the time we got back to the dock, I was having a hard time walking, and my partner thankfully got someone else to help put the boat back in its rack. Depressing the clutch on the way home didn’t improve things much, and by the time I got home I was seriously hurting.
After sitting for a while, the pain subsided, so I headed out to a dental appointment in the U District. Ahh, that clutch again. Managed to get there, and the pain disappeared while in the dentist’s chair, but going back home brought it back. When I got home I took a couple of Alleve, but wasn’t sure they did anything. Sitting still did seem to reduce it.
Off and on I went through the day, slowly discovering that clutch use, walking more than 1 block, and going up and down the stairs all brought on quite severe pain, which Alleve and Ibuprofen didn’t seem to do much to help. On Thursday I decided to skip driving to my gym and asked Phil to drive me to do my grocery shopping. Off and on today I alternated between doing fine and bending over with pain. Much worse pain than anything I had with surgery. And of course speculating all the while—could this be the potential by-product of lymph node removal that my surgeon had mentioned? Could I have pulled something unknowingly? Is it something else? Should I ride it out over the weekend and see if it will improve? Should I check in with my surgeon, or with someone else at Group Health?
Just after I finally called my surgeon’s office to leave a message asking them if they could give me any wisdom about how I should proceed, I got a call from my Group Health oncologist. A couple of suspicious things had shown up on the CT scan done on Tuesday that might represent spread of the cancer. One of them was a swelling in the left groin. Had I noticed anything? Had I indeed??? He wanted me to come in immediately so he could feel in that region, and figure out if they needed to do a biopsy. My worry level soared, imagining all sorts of scenarios from additional surgery to immediately beginning radiation or chemo.
I survived one more driving trip with the clutch (Group Health is just about 10 minutes away). My oncologist palpated my groin region and did not find anything, nor was anything painful to touch. Since his reaction had been based on the lab report of the scan, rather than his own viewing, he looked at the scan more carefully and concluded that since the internal swelling showing on the scan was in the area of my surgery, it might well be an after-effect of the surgery and probably did not represent metastasis of the cancer. I peeled my turmoiled emotions off the ceiling and settled down to talk with him about next steps—both to check out the suspicions noted on the scan AND to deal with the pain I’ve been experiencing. For the pain, he suggested I proceed with my surgeon to see what thoughts she has. For the general suspicions, he has scheduled me for an MRI next week, to provide a further check.
I’ve settled back down and am planning to spend as much time as possible sitting over the next three days, limiting my walking and letting Phil do the driving, to see if I can reduce the amount of pain. The retreat should make that easy to do. Hopefully by Monday I’ll get some advice from the surgeon’s office and see if this might resolve itself or needs an intervention.
What depths and heights you can experience in a few short hours!
Tuesday, May 13, 2008
Women at Work & Play
I spent last weekend (extended—Friday through Sunday) with good friend Nina Rook, and two of her female friends, on South Finger Island in the San Juans, where Nina has a cabin. South Finger is one of two very small private islands tucked inside a slightly larger island (Sucia), which is a state park—all located just north of Orcas Island, one of the major islands in the San Juan group. Nina is part of a group that bought the island about 28 years ago, and we were there to help clean up the property and enjoy ourselves.
It proved a wonderfully relaxing weekend, even though we committed ourselves to several bouts of rolling log rounds about, sawing, clipping and hauling branches large and small, burning accumulated wood and clearing trails. In between work bouts we indulged in yoga sessions led by Nina (who teaches yoga), trekking around the island, sitting quietly observing the birds, flowers and water, eating several wonderful meals and lots of good conversation.
Our prize observation for the weekend was this hummingbird nest. Nina managed to catch the bird sitting on its tiny perch, which was all of 1 ½” high and wide. In all, the weekend was great fun, including meeting a couple of new friends I thoroughly enjoyed.
On the health front, I am still waiting for word from my 2nd opinion UW physician on when I’ll be able to see him. Meantime I had another CT scan today, of the chest and liver and abdomen, to provide a baseline for future comparison. Can’t say the “barium vanilla smoothie” was the best thing I’ve ever gulped down, but it was tolerable.
Phil and I are scheduled for a weekend retreat at Harmony Hill, from Friday noon through Sunday afternoon. He’s not too thrilled, but is at least willing to come along and participate. We’ll see what interesting things I learn in this visit! We’ll be hightailing it back to Seattle on Sunday afternoon to make our book group gathering at 6 pm, where we’ll be discussing Shakespeare’s “Measure for Measure.” That should be great fun.
It proved a wonderfully relaxing weekend, even though we committed ourselves to several bouts of rolling log rounds about, sawing, clipping and hauling branches large and small, burning accumulated wood and clearing trails. In between work bouts we indulged in yoga sessions led by Nina (who teaches yoga), trekking around the island, sitting quietly observing the birds, flowers and water, eating several wonderful meals and lots of good conversation.
Our prize observation for the weekend was this hummingbird nest. Nina managed to catch the bird sitting on its tiny perch, which was all of 1 ½” high and wide. In all, the weekend was great fun, including meeting a couple of new friends I thoroughly enjoyed.
On the health front, I am still waiting for word from my 2nd opinion UW physician on when I’ll be able to see him. Meantime I had another CT scan today, of the chest and liver and abdomen, to provide a baseline for future comparison. Can’t say the “barium vanilla smoothie” was the best thing I’ve ever gulped down, but it was tolerable.
Phil and I are scheduled for a weekend retreat at Harmony Hill, from Friday noon through Sunday afternoon. He’s not too thrilled, but is at least willing to come along and participate. We’ll see what interesting things I learn in this visit! We’ll be hightailing it back to Seattle on Sunday afternoon to make our book group gathering at 6 pm, where we’ll be discussing Shakespeare’s “Measure for Measure.” That should be great fun.
Wednesday, May 7, 2008
Relief!
This morning I had the appointment I had been most concerned about…meeting the oncologist at my primary care (& insurance) provider. With great relief, I found that he’s pretty much in agreement with the treatment that was recommended by the oncologist I saw last Friday (who was part of the Tumor Board review team). So I will not have to fight a battle to get chemotherapy or radiation, if that is what I decide I want.
The challenge now is to see if there is any consensus about my treatment among the three oncologists from whom I am seeking advice. Two of those I have already seen, and they concurred with each other, recommending the same chemotherapy regime and feeling there is not much to be gained from radiation. The 3rd opinion will be the oncologist at UW, who will be putting my pathology slides through another Tumor Board review there. His initial reaction to my pathology report went in a totally different direction: radiation. I should know more next week about when that UW review and my meeting with him might happen.
If I end up with quite different recommendations surfacing from these three oncologists, I will be left with a difficult decision to make. More learning to do. Life is certainly not dull!
The challenge now is to see if there is any consensus about my treatment among the three oncologists from whom I am seeking advice. Two of those I have already seen, and they concurred with each other, recommending the same chemotherapy regime and feeling there is not much to be gained from radiation. The 3rd opinion will be the oncologist at UW, who will be putting my pathology slides through another Tumor Board review there. His initial reaction to my pathology report went in a totally different direction: radiation. I should know more next week about when that UW review and my meeting with him might happen.
If I end up with quite different recommendations surfacing from these three oncologists, I will be left with a difficult decision to make. More learning to do. Life is certainly not dull!
Sunday, May 4, 2008
The Amazing DaVinci Robot
Last night I entertained myself by watching a video that held a unique interest for me. It featured a surgical team at UNC-Chapel Hill performing a hysterectomy using the DaVinci Robot. I found it absolutely fascinating.
For some reason I’ve long had an interest in surgery and how it’s done. So this was perhaps not as ghoulish as it might seem to some. When my surgeon described how she actually used the machine, operating it from outside the operating room, I knew I wanted to see how that could work. So I looked up the DaVinci robot website, and just as she’d said, they have tapes of a variety of different types of surgeries to help surgeons see how the robot works.
It was amazing to see the precision with which the surgeon can wield the tiny tools at the ends of the robot arms. Apparently there are separate cameras for each of the surgeon’s eyes, which provide a 3-dimensional view that’s considerably magnified, so they can actually see better than if they were doing it as an open surgery. The best part of all was watching the surgeon put in sutures, with the crowning glory being the ease with which he tied off the knot. I, who have so much trouble tying knots on my fishing hooks, was terribly envious.
It’s not for everyone, but anyone interested in seeing how the technology works can visit the DaVinci robot website and take a look. Pick the “live webcams” from the list on the left, and then select the surgery of your choice. They’re using it for a lot of different things.
For some reason I’ve long had an interest in surgery and how it’s done. So this was perhaps not as ghoulish as it might seem to some. When my surgeon described how she actually used the machine, operating it from outside the operating room, I knew I wanted to see how that could work. So I looked up the DaVinci robot website, and just as she’d said, they have tapes of a variety of different types of surgeries to help surgeons see how the robot works.
It was amazing to see the precision with which the surgeon can wield the tiny tools at the ends of the robot arms. Apparently there are separate cameras for each of the surgeon’s eyes, which provide a 3-dimensional view that’s considerably magnified, so they can actually see better than if they were doing it as an open surgery. The best part of all was watching the surgeon put in sutures, with the crowning glory being the ease with which he tied off the knot. I, who have so much trouble tying knots on my fishing hooks, was terribly envious.
It’s not for everyone, but anyone interested in seeing how the technology works can visit the DaVinci robot website and take a look. Pick the “live webcams” from the list on the left, and then select the surgery of your choice. They’re using it for a lot of different things.
Saturday, May 3, 2008
Being Unique
After my visit Friday morning with one of the oncologists who was on the Tumor Board Review team, I am beginning to grasp what it means to be “unique” in the world of cancer. While one might have a certain satisfaction in having a cancer that isn’t like what everyone else has, in fact it’s not a good idea to do so. It puts you in a category where no one knows what to do with you. And that looks like where I am.
My visit with the oncologist was very helpful—and I went prepared, having gone on the Internet the night before and given myself a short course in the different types of uterine cancers and their prognoses. I also had my sheet of questions—a tactic I have found very helpful for doctor’s visits, because otherwise I tend to forget things.
What I learned from him was that, at least based on their pathologist’s reading of my slides, I am occupying a very small corner of a small system within the overall cancer universe. It goes something like this. Uterine sarcomas make up 4-5% of all uterine cancers (themselves not a huge percent of all cancers). There are about three main types of uterine sarcomas. I don’t appear to fit into any of those three. Off in a corner of this already very small territory are a couple of even rarer types, and I may have one of those: a high-grade, undifferentiated sarcoma. Nice going, Kae!
What being that unique means in practice is that there is almost no data on things that one can customarily find out, like survival rates, the types of treatment that seem to be effective, and the results of different types of treatment. The oncologist said they would most likely have to extrapolate from the treatment of soft-tissue sarcomas that occur in other places in the body.
Speaking of other places in the body—that is this oncologist’s primary concern. This cancer travels mainly in the blood. If there really is NO cancer outside the uterus, I am in good shape. If however there happen to be some tiny cancer cells that are not currently large enough to be picked up on a CT scan or show up on any of tests they conducted, chances are they will migrate to some other part of my body (lungs are the primary candidate, followed by liver, then brain, and lastly bones), and eventually show up there. At which point they will be much more difficult to treat than now.
This is round one of deciding “what’s next.” Round two will be my meeting with the oncologist at Group Health (next Wednesday). Round Three will be my second opinion from the UW physician, who is going to have the slides reinterpreted by staff there (unknown time frame—probably a couple of weeks). I think the more heads that get into this one, the better, so I will wait for all of these rounds before entering Round Four—making my decision about what to do.
My visit with the oncologist was very helpful—and I went prepared, having gone on the Internet the night before and given myself a short course in the different types of uterine cancers and their prognoses. I also had my sheet of questions—a tactic I have found very helpful for doctor’s visits, because otherwise I tend to forget things.
What I learned from him was that, at least based on their pathologist’s reading of my slides, I am occupying a very small corner of a small system within the overall cancer universe. It goes something like this. Uterine sarcomas make up 4-5% of all uterine cancers (themselves not a huge percent of all cancers). There are about three main types of uterine sarcomas. I don’t appear to fit into any of those three. Off in a corner of this already very small territory are a couple of even rarer types, and I may have one of those: a high-grade, undifferentiated sarcoma. Nice going, Kae!
What being that unique means in practice is that there is almost no data on things that one can customarily find out, like survival rates, the types of treatment that seem to be effective, and the results of different types of treatment. The oncologist said they would most likely have to extrapolate from the treatment of soft-tissue sarcomas that occur in other places in the body.
Speaking of other places in the body—that is this oncologist’s primary concern. This cancer travels mainly in the blood. If there really is NO cancer outside the uterus, I am in good shape. If however there happen to be some tiny cancer cells that are not currently large enough to be picked up on a CT scan or show up on any of tests they conducted, chances are they will migrate to some other part of my body (lungs are the primary candidate, followed by liver, then brain, and lastly bones), and eventually show up there. At which point they will be much more difficult to treat than now.
This is round one of deciding “what’s next.” Round two will be my meeting with the oncologist at Group Health (next Wednesday). Round Three will be my second opinion from the UW physician, who is going to have the slides reinterpreted by staff there (unknown time frame—probably a couple of weeks). I think the more heads that get into this one, the better, so I will wait for all of these rounds before entering Round Four—making my decision about what to do.
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