One of my small battles the past several weeks has been to retain my identity—that is, the name by which I am known to my family and friends (and professionally, for that matter). It is a real fight!
Some of you may not even know that my legal name is Karen. But the hospital and all my doctors’ offices do. That’s because of the tie that my retired state employee insurance has to my employment records, which was in turn tied to social security. And social security, along with your passport and driver’s license, are all places where you can’t use anything other than your legal name.
I have been known as “Kae” since childhood. My mother bequeathed me this combination of legal (Karen) and nickname (Kae) names, after a Swedish girlfriend of hers who apparently had the same set. As you can imagine, “Kae” is the name I use and recognize. All my bank accounts, my Schwab account, and even my doctorate, are in that name. My entire 38 year professional identity is in that name. Karen was the name that was used by schools and teachers who didn’t know me, as well as by my mother when she was angry with me. You know the routine: “Karen Edmiston, you get in here right now!” Thus “Karen” denotes either parental anger, or someone who doesn’t know me.
There was a time when I had succeeded in getting my health coop to record me as Kae. But something happened when I retired and they reverted to Karen. After a couple of dead end attempts to get it changed, I gave up. But now, as I go through this emotionally wearing time, it is important to me to be myself, not a stranger.
I don’t recognize myself when I’m sitting in the waiting room and someone asks for “Karen.” So I am waging a war to try to reclaim myself. Each doctor’s office I go to, I ask to retitle my chart as “Kae.” Since they already have my name printed at the top as Karen, they simply add “Kae” behind it. And then proceed to call me Karen. Each time they use Karen, I correct them. Dogs in training. I don’t know how long it will take, but I’m not giving up.
My one minor triumph comes each time they ask me to sign a document. That’s pretty frequently—at least once per visit. I consistently sign it with the signature I always use (except on my tax return)—Kae R. Hutchison. Not once have they even looked at my signature. But I enjoy my little victory. If it ruffles their feathers sometime down the line, that’s too damn bad. I want to be me.
Sunday, March 30, 2008
Saturday, March 29, 2008
Surgery Update and Good News!
Surgery Update & Good News
I finally was able to talk with my surgeon yesterday afternoon, and get more information on why she changed her mind and decided to try the surgery with the robot. The really good news was that the CT scan showed that there was no mass outside the uterus. My uterus is enlarged, so something extra is inside it, perhaps related to my cancer, perhaps not. There was also no visible enlargement of the lymph nodes. So she wants to try it laparascopically. I’m all for it. If it doesn’t work, I’ll have a couple of extra small incisions to heal. If it does, my time in hospital and recovery afterwards are both cut in half.
The surgery itself will be long, and will happen on the afternoon of the 7th. It apparently takes about an hour to set the robot up, and then another 3 hours to do the surgery. That time will be extended if they have to change course and revert to an abdominal incision. I’m feeling really good about the approach and what the scan showed. Click here to look at the Da Vinci robot, my surgery expert.
I got started this week on my Chinese medicine (a ground-up powder of herbs that you dissolve in hot water and try to bolt down as quickly as possible, because it’s quite bitter) and a rack of supplementary vitamins that my naturopath prescribed for me. I should be healthy as a horse! I am having some trouble trying to get myself to take the various vitamins and concoctions, steering around 3x a day with meals, a couple taken before bed, and one that wants to be taken on an empty stomach (so none of the above times). I miss one set every once in a while, but that’s just the way it goes.
I also met with the anesthesiologist and got some orientation there. That meeting also occasioned my first little tussle between western and eastern approaches. He knows about vitamins, so could be quite precise about telling me which ones he wanted me to stop when. But he was very concerned about the herbal medicines since he doesn’t know what’s in them and wanted me to stop them immediately. I demurred, and said I’d consider stopping them a week before the surgery. Then I talked with my Chinese medicine specialist, who said there’s nothing there that will interfere with the anesthesiology, but I could stop them two days beforehand if I want and there won’t be anything left in my system by surgery. I rather figured that even if he doesn’t know what she does, SHE would know about his procedures. And I was right.
I’m also slowly trying to ferret out information about the best course of action should I need additional treatment after surgery. Sounds like my core medical cooperative may have the best options for me if I need radiation or chemo, so I am gathering information to help me in the battle I may need to fight. They are conservative and cost-conscious, a combination that might keep me from some of the newer (and possibly more expensive) regimes that might be available. Will have to keep thinking about that one. Fortunately I turn out to have a number of friends connected in various ways to the medical establishment, who can help me figure that out.
So next week is gathering myself together time, getting my work and life wrapped up so I can focus on healing and relaxing for the several weeks after my surgery. Right, Kae! I should know myself better than that. But I’m going to give it a go…and I suspect my body will make me do it for at least a week or so.
I finally was able to talk with my surgeon yesterday afternoon, and get more information on why she changed her mind and decided to try the surgery with the robot. The really good news was that the CT scan showed that there was no mass outside the uterus. My uterus is enlarged, so something extra is inside it, perhaps related to my cancer, perhaps not. There was also no visible enlargement of the lymph nodes. So she wants to try it laparascopically. I’m all for it. If it doesn’t work, I’ll have a couple of extra small incisions to heal. If it does, my time in hospital and recovery afterwards are both cut in half.
The surgery itself will be long, and will happen on the afternoon of the 7th. It apparently takes about an hour to set the robot up, and then another 3 hours to do the surgery. That time will be extended if they have to change course and revert to an abdominal incision. I’m feeling really good about the approach and what the scan showed. Click here to look at the Da Vinci robot, my surgery expert.
I got started this week on my Chinese medicine (a ground-up powder of herbs that you dissolve in hot water and try to bolt down as quickly as possible, because it’s quite bitter) and a rack of supplementary vitamins that my naturopath prescribed for me. I should be healthy as a horse! I am having some trouble trying to get myself to take the various vitamins and concoctions, steering around 3x a day with meals, a couple taken before bed, and one that wants to be taken on an empty stomach (so none of the above times). I miss one set every once in a while, but that’s just the way it goes.
I also met with the anesthesiologist and got some orientation there. That meeting also occasioned my first little tussle between western and eastern approaches. He knows about vitamins, so could be quite precise about telling me which ones he wanted me to stop when. But he was very concerned about the herbal medicines since he doesn’t know what’s in them and wanted me to stop them immediately. I demurred, and said I’d consider stopping them a week before the surgery. Then I talked with my Chinese medicine specialist, who said there’s nothing there that will interfere with the anesthesiology, but I could stop them two days beforehand if I want and there won’t be anything left in my system by surgery. I rather figured that even if he doesn’t know what she does, SHE would know about his procedures. And I was right.
I’m also slowly trying to ferret out information about the best course of action should I need additional treatment after surgery. Sounds like my core medical cooperative may have the best options for me if I need radiation or chemo, so I am gathering information to help me in the battle I may need to fight. They are conservative and cost-conscious, a combination that might keep me from some of the newer (and possibly more expensive) regimes that might be available. Will have to keep thinking about that one. Fortunately I turn out to have a number of friends connected in various ways to the medical establishment, who can help me figure that out.
So next week is gathering myself together time, getting my work and life wrapped up so I can focus on healing and relaxing for the several weeks after my surgery. Right, Kae! I should know myself better than that. But I’m going to give it a go…and I suspect my body will make me do it for at least a week or so.
Wednesday, March 26, 2008
Hooray for Family!
This last weekend, I spent a long weekend in Carpinteria, California (just south of Santa Barbara) enjoying both warm, sunny weather (low 70’s during the day) and my extended family. We were gathered to celebrate my stepmother Dene’s 90th birthday. My dad (93), my aunt and uncle (85 and 89 respectively), my stepmom’s sister and husband, plus my two stepbrothers and sister-in-law and three of their four children, plus my son and his girlfriend were there—16 of us in all. A great troop of elders for the next generation to emulate.
It was a wonderful weekend, and especially good tonic for me. I felt so lucky, first to have had a good “first” family, and second, to have acquired such a great “second” family when my father remarried (my mother died about 28 years ago, and my dad and Dene have been married over 25 years now). The birthday celebration was Saturday afternoon, filled with good laughter and lots of stories. I really basked in the love and affection that was so evident in this celebration.
The stress for me, which caused a somewhat sleep-deprived night on Saturday, was when and how to break the news to my parents. I planned to wait until after the party, but with so many people around, it was hard to figure out when to do it. I wanted to tell them first, and then to let others there know. I was also very worried about their reactions, not wanting them to take on a huge worry burden. And as is usual, nothing worked out quite as I had planned it.
As it turned out, my imagination had generated much worse scenarios than the actuality. After planning to have these conversations Sunday afternoon, I was co-opted by a distance relative who stopped by for a chat. So I ended up talking to most everyone on Monday. The staging of the order in which I told people also didn’t work out as I had planned, but it was just fine. I talked with my dad briefly first, then went with him to talk with he and Dene, with her sister and husband sitting in because they were there. I spent about 45 minutes running them through all I knew and was doing, and they agreed that it looked like I was in pretty good shape. I was able to talk with one stepbrother before he left on Sunday morning, and caught the other by phone on Tuesday after I returned. My aunt and uncle I told as I put them on the train on Monday morning.
I also turned up more family medical history. Apparently my youngest cousin (a blood cousin) had uterine cancer about 30 years ago, and was treated successfully for it. And Dene’s sister had had uterine cancer about 20 years ago, and fortunately had no need to any treatment beyond the hysterectomy. It helped to have news of two survivors.
This whole episode taught me (a) the value of family and the loving support that’s there and (b) not to worry so much about trying to control just how things happen. What actually happens often works out better than what you had planned.
After these conversations on Monday, I felt an immense sense of relaxation. I think the hardest part of this phase is over. My family knows, the people I work with know, and now I just have to keep spreading the word among my friends—a slower process than I would like, but I can only manage so many of those conversations each day.
Here’s to FAMILY!!!!
It was a wonderful weekend, and especially good tonic for me. I felt so lucky, first to have had a good “first” family, and second, to have acquired such a great “second” family when my father remarried (my mother died about 28 years ago, and my dad and Dene have been married over 25 years now). The birthday celebration was Saturday afternoon, filled with good laughter and lots of stories. I really basked in the love and affection that was so evident in this celebration.
The stress for me, which caused a somewhat sleep-deprived night on Saturday, was when and how to break the news to my parents. I planned to wait until after the party, but with so many people around, it was hard to figure out when to do it. I wanted to tell them first, and then to let others there know. I was also very worried about their reactions, not wanting them to take on a huge worry burden. And as is usual, nothing worked out quite as I had planned it.
As it turned out, my imagination had generated much worse scenarios than the actuality. After planning to have these conversations Sunday afternoon, I was co-opted by a distance relative who stopped by for a chat. So I ended up talking to most everyone on Monday. The staging of the order in which I told people also didn’t work out as I had planned, but it was just fine. I talked with my dad briefly first, then went with him to talk with he and Dene, with her sister and husband sitting in because they were there. I spent about 45 minutes running them through all I knew and was doing, and they agreed that it looked like I was in pretty good shape. I was able to talk with one stepbrother before he left on Sunday morning, and caught the other by phone on Tuesday after I returned. My aunt and uncle I told as I put them on the train on Monday morning.
I also turned up more family medical history. Apparently my youngest cousin (a blood cousin) had uterine cancer about 30 years ago, and was treated successfully for it. And Dene’s sister had had uterine cancer about 20 years ago, and fortunately had no need to any treatment beyond the hysterectomy. It helped to have news of two survivors.
This whole episode taught me (a) the value of family and the loving support that’s there and (b) not to worry so much about trying to control just how things happen. What actually happens often works out better than what you had planned.
After these conversations on Monday, I felt an immense sense of relaxation. I think the hardest part of this phase is over. My family knows, the people I work with know, and now I just have to keep spreading the word among my friends—a slower process than I would like, but I can only manage so many of those conversations each day.
Here’s to FAMILY!!!!
Surgery Scheduled
It took forever to find out, but my surgery is now scheduled for Monday April 7. Last week I waited day to day to find out. I finally checked in with my surgeon’s nurse on Thursday, since I was leaving for California on Friday morning, to see if there was an inkling. She said they had a tentative reservation for the following Wednesday (March 26), but wouldn’t know until they heard back from the hospital. So I left for California with that plan, and asked our buddy Dusty Rhodes (who was also running us to the airport) to pick up the requisite Fleet’s enemas for me, because if that schedule held, I would need to be administering those immediately on my return Monday evening.
What are friends for if you can’t ask them to do such things!
Late Friday afternoon, my surgeon’s nurse called to tell me that surgery was scheduled for April 7, because Dr. D had decided to try to do it with the robot (i.e., laparoscopically). Apparently after reviewing the CT scan I had, she thought that it was worth trying for the less invasive procedure. If it doesn’t appear to be working once they start the surgery, they can revert to Plan B (formerly, Plan A).
I’m delighted. Can’t think of anything more fun than being operated on by a robot named DaVinci. And if it works, the time in hospital is reduced from 2-3 days to 1, the need for a blood transfusion is minimized, and predicted recovery time shrinks from 4-5 weeks to 2 (or so, I presume). I will hope for the best. And of course I won’t know until I come out of the anesthesia which way they were able to go.
At first I was unhappy that the surgery was suddenly two weeks away. Now that I’m back in Seattle and working through the things I’d like to get done beforehand, I am grateful for that extra time. I now have my “alternative” team in place—the Chinese medicine specialist and the naturopath. The former will focus on using Chinese herbs in carefully measured doses and combinations, along with acupuncture; the latter will help me wade my way through all the options for diet and vitamin supplements. The two of them were considerably in synch on some basics: cut down on the wine (2-3 glasses/week—it spikes both estrogen and blood sugar), refined sugars (but don’t abandon natural sugars altogether), and some supplementary vitamins I should be taking. Right now both are focused on helping me through the surgery in the best way, since we still don’t know just what kind of cancer I have.
So the waiting game begins. Post-surgery we may know a little more, but it won’t be until the pathology reports are back 7-10 days or so after the surgery that we actually know what we’re dealing with. Then the medical community and my alternative team can both swing into action to help me work on the cancer.
I’m pretty comfortable right now, sleeping better, and tucking the activities I normally do (exercise, tango lessons, Spanish studies, plus volunteer work for the drug, alcohol & mental agency where I’m on the board, and attending to my leadership program activities) in between numerous doctors appointments. That’s why this blog keeps getting put off—I’m really busy. And happily so. I can’t think of anything worse than having nothing else to focus on except the fact that I have cancer.
What are friends for if you can’t ask them to do such things!
Late Friday afternoon, my surgeon’s nurse called to tell me that surgery was scheduled for April 7, because Dr. D had decided to try to do it with the robot (i.e., laparoscopically). Apparently after reviewing the CT scan I had, she thought that it was worth trying for the less invasive procedure. If it doesn’t appear to be working once they start the surgery, they can revert to Plan B (formerly, Plan A).
I’m delighted. Can’t think of anything more fun than being operated on by a robot named DaVinci. And if it works, the time in hospital is reduced from 2-3 days to 1, the need for a blood transfusion is minimized, and predicted recovery time shrinks from 4-5 weeks to 2 (or so, I presume). I will hope for the best. And of course I won’t know until I come out of the anesthesia which way they were able to go.
At first I was unhappy that the surgery was suddenly two weeks away. Now that I’m back in Seattle and working through the things I’d like to get done beforehand, I am grateful for that extra time. I now have my “alternative” team in place—the Chinese medicine specialist and the naturopath. The former will focus on using Chinese herbs in carefully measured doses and combinations, along with acupuncture; the latter will help me wade my way through all the options for diet and vitamin supplements. The two of them were considerably in synch on some basics: cut down on the wine (2-3 glasses/week—it spikes both estrogen and blood sugar), refined sugars (but don’t abandon natural sugars altogether), and some supplementary vitamins I should be taking. Right now both are focused on helping me through the surgery in the best way, since we still don’t know just what kind of cancer I have.
So the waiting game begins. Post-surgery we may know a little more, but it won’t be until the pathology reports are back 7-10 days or so after the surgery that we actually know what we’re dealing with. Then the medical community and my alternative team can both swing into action to help me work on the cancer.
I’m pretty comfortable right now, sleeping better, and tucking the activities I normally do (exercise, tango lessons, Spanish studies, plus volunteer work for the drug, alcohol & mental agency where I’m on the board, and attending to my leadership program activities) in between numerous doctors appointments. That’s why this blog keeps getting put off—I’m really busy. And happily so. I can’t think of anything worse than having nothing else to focus on except the fact that I have cancer.
Wednesday, March 19, 2008
Waiting
It’s Wednesday evening, and two days have gone by since I met with my surgeon, Dr. D, on Monday morning. It was a 3 hour visit that left me with lots of information about what she thinks needs to be done (the most disturbing part of that being taking sections of the lymph nodes), what could go wrong, and the unsettling news that I appear to have a large mass outside the uterus that reaches up almost to my belly button. But for that newly discovered mass, I would have been a good candidate for their less invasive robot-assisted surgery. Because of that mass, she’s leaning strongly towards a traditional hysterectomy, with a nice belly button to pubic hair incision. Good thing I’m not into bikinis anymore!
I’m sure the detailed explanations of what could go wrong are there to protect them from lawsuits, as well as to head off your being totally surprised if, after your surgery, you find that one of those things has actually happened to you. The percentages of its happening are small (mostly in the range of 1-10%), but I still left with my head full of the bad things that could happen, most of which could result from the lymph nodes part of the surgery. A bit of a downer, to say the least.
I also learned that we don’t know much about the cancer at this point. It looks like it is a high-grade (meaning aggressive) cancer. We’re not sure where it is, since the sample tested was quite small. We don’t know if it might be spread around. She did say a couple times that it’s not unusual to find cancer outside the uterus when they get into the surgery, because of the (literally) fluid environment in there.
Among other things, I am learning the vocabulary for explaining cancer:
Type=tissue or muscle (I think; there are words like sarcoma, carcinoma, MMT, as well as well differentiated, moderately differentiated and undifferentiated floating around there too)
Grade= how aggressive the cancer is (high-grade is aggressive, and that’s me)
Stage=how far the cancer has spread beyond the primary site (unknown now for me).
Stage I would be contained in the uterus. Stage II would include the cervix. Stage III would involve the Fallopian tubes or ovaries, vagina and/or lymph nodes. Stage IV would involve organs beyond that.
Dr. D referred me for a CT scan (I know it as a CAT scan) of the abdominal area, which exciting procedure I got to do Monday afternoon. First, ingest two large glasses of orange liquid, which tastes like a cross between coolaid and something just a little sour. Not bad, but not tasty either. Anyway, drink that down as fast as you can, because they need to wait 30 minutes after you’ve consumed it to do the test. Then get hooked up for an IV, which allows them to send a contrasting liquid into you so they can differentiate vessels from organs. Now, lie down on a couch which has a large plastic doughnut around it, and wait for it to move over you, while the mysterious (and very pleasant) male voice says “Breathe in, hold your breath” and then finally, “Breathe!” Several of these little runs later, my cheerful (he really was) technician bids me adieu, telling me he’s trying to make the experience as pleasant as possible because I’ll be sent back for a follow-up several months after treatment. He had a great sense of humor, and he succeeded—I won’t mind going back. Except for that liquid.
Tuesday was waiting day—expecting to be called by Dr. D’s office about when the surgery would be scheduled. No call, and I was feeling suspended, wanting to be able to plan my life next week around that surgery. On Wednesday, still no call. But a great visit Wednesday afternoon to my “2nd opinion” surgeon Dr. F, nationally known, and as it happens, the person who trained Dr. D. He thinks highly of her—both her surgical skills and her decision making, so that made me feel great. He basically confirmed that he would follow the same course she has recommended, gave me a little more of a lesson on various kinds of cancer, and also said he’d like to stay informed and would be in my corner to fight for the appropriate treatment if Group Health balks at the recommendations that come following surgery. What a great feeling—I went home feeling I was in very good hands.
The last piece of what I regard as “my team” fell into place this morning. I have connected with a naturopath, who is actually on the approved provider list for Group Health (as my acupuncturist is NOT), so will get a little relief in the cost of working with her. Except for my 2nd opinion physician, I have an all female team, and I’m delighted. Hooray for the advances in professional independence for women!! Dr. O sounded like she will be great to work with. She sees herself as a coordinator of my overall care, supplementing the medical care with nutrition both during treatment and after, providing emotional support and filling in other areas that are sometimes not addressed. She’s knowledgeable about medical treatment protocols and very careful to be sure that whatever she’s recommending in the way of supplemental treatment doesn’t interfere with the types of radiation or chemotherapy they’re using. So even though my surgeon is quite equivocal about these supplemental types of support (doesn’t mind cooperating or sending them information, doesn’t think they hurt and not sure that they help, and doesn’t see herself as part of a “team” with them), I think I can get what I need from the resources I have gathered.
So I’m feeling good. Just need to pin that surgery down! Tomorrow I see my Chinese medicine/acupuncture specialist for the first visit. First visit to the naturopath is Tuesday.
Now for some of the more psychological aspects of the last few days. I’m getting calmer as the days go by. I’ve slept better the last few nights. My blood pressure is getting back closer to normal range. Each time I’ve been a doctor’s office, they take my blood pressure, so I’ve noted that whereas my normal range in recent years has been in the 120”s/60’s range, my visit to the Group Health gynecologist had me pegging in at 143/83. A week later visiting the surgeon I was up to 150+/80+. But today for my visit with Dr. F, I was back down to 127/82 or thereabouts. It’s amazing what anxiety can do to you. My weight has also been going down on each visit. I was down to 127 pounds today, and started at a little over 131 a couple weeks ago. It’s probably due to the diet adjustments I’ve made, so I’d better make sure to eat a little more heartily.
I have filled out my medical history at least four times in the last week. Thank goodness I haven’t had many illnesses and don’t take any medications. If I did, it would take forever to dredge up all that material over and over. I had passing feelings of being a cog in a very large machine, being shoved along the conveyor belt. The attitude of the staff in each of the offices makes a huge difference in counteracting this feeling.
I have also come to a new understanding of the words “living with cancer.” I had heard that phrase, and always thought of it as telling you that cancer is something that once you have it, you are never totally free of. But I have discovered in the last week that it’s also a presence that intrudes on your thoughts constantly. I have found myself seeking activities that will give me a good solid 15 minutes where I don’t think about my cancer. The best activities are ones that keep me “cancer-thought free” for even longer, like our tango lesson last night. I am sure this will change over time, but it certainly becomes a huge presence in your life. Imagine anything else that would think about that frequently, and the impact it would have on you.
I’m sure the detailed explanations of what could go wrong are there to protect them from lawsuits, as well as to head off your being totally surprised if, after your surgery, you find that one of those things has actually happened to you. The percentages of its happening are small (mostly in the range of 1-10%), but I still left with my head full of the bad things that could happen, most of which could result from the lymph nodes part of the surgery. A bit of a downer, to say the least.
I also learned that we don’t know much about the cancer at this point. It looks like it is a high-grade (meaning aggressive) cancer. We’re not sure where it is, since the sample tested was quite small. We don’t know if it might be spread around. She did say a couple times that it’s not unusual to find cancer outside the uterus when they get into the surgery, because of the (literally) fluid environment in there.
Among other things, I am learning the vocabulary for explaining cancer:
Type=tissue or muscle (I think; there are words like sarcoma, carcinoma, MMT, as well as well differentiated, moderately differentiated and undifferentiated floating around there too)
Grade= how aggressive the cancer is (high-grade is aggressive, and that’s me)
Stage=how far the cancer has spread beyond the primary site (unknown now for me).
Stage I would be contained in the uterus. Stage II would include the cervix. Stage III would involve the Fallopian tubes or ovaries, vagina and/or lymph nodes. Stage IV would involve organs beyond that.
Dr. D referred me for a CT scan (I know it as a CAT scan) of the abdominal area, which exciting procedure I got to do Monday afternoon. First, ingest two large glasses of orange liquid, which tastes like a cross between coolaid and something just a little sour. Not bad, but not tasty either. Anyway, drink that down as fast as you can, because they need to wait 30 minutes after you’ve consumed it to do the test. Then get hooked up for an IV, which allows them to send a contrasting liquid into you so they can differentiate vessels from organs. Now, lie down on a couch which has a large plastic doughnut around it, and wait for it to move over you, while the mysterious (and very pleasant) male voice says “Breathe in, hold your breath” and then finally, “Breathe!” Several of these little runs later, my cheerful (he really was) technician bids me adieu, telling me he’s trying to make the experience as pleasant as possible because I’ll be sent back for a follow-up several months after treatment. He had a great sense of humor, and he succeeded—I won’t mind going back. Except for that liquid.
Tuesday was waiting day—expecting to be called by Dr. D’s office about when the surgery would be scheduled. No call, and I was feeling suspended, wanting to be able to plan my life next week around that surgery. On Wednesday, still no call. But a great visit Wednesday afternoon to my “2nd opinion” surgeon Dr. F, nationally known, and as it happens, the person who trained Dr. D. He thinks highly of her—both her surgical skills and her decision making, so that made me feel great. He basically confirmed that he would follow the same course she has recommended, gave me a little more of a lesson on various kinds of cancer, and also said he’d like to stay informed and would be in my corner to fight for the appropriate treatment if Group Health balks at the recommendations that come following surgery. What a great feeling—I went home feeling I was in very good hands.
The last piece of what I regard as “my team” fell into place this morning. I have connected with a naturopath, who is actually on the approved provider list for Group Health (as my acupuncturist is NOT), so will get a little relief in the cost of working with her. Except for my 2nd opinion physician, I have an all female team, and I’m delighted. Hooray for the advances in professional independence for women!! Dr. O sounded like she will be great to work with. She sees herself as a coordinator of my overall care, supplementing the medical care with nutrition both during treatment and after, providing emotional support and filling in other areas that are sometimes not addressed. She’s knowledgeable about medical treatment protocols and very careful to be sure that whatever she’s recommending in the way of supplemental treatment doesn’t interfere with the types of radiation or chemotherapy they’re using. So even though my surgeon is quite equivocal about these supplemental types of support (doesn’t mind cooperating or sending them information, doesn’t think they hurt and not sure that they help, and doesn’t see herself as part of a “team” with them), I think I can get what I need from the resources I have gathered.
So I’m feeling good. Just need to pin that surgery down! Tomorrow I see my Chinese medicine/acupuncture specialist for the first visit. First visit to the naturopath is Tuesday.
Now for some of the more psychological aspects of the last few days. I’m getting calmer as the days go by. I’ve slept better the last few nights. My blood pressure is getting back closer to normal range. Each time I’ve been a doctor’s office, they take my blood pressure, so I’ve noted that whereas my normal range in recent years has been in the 120”s/60’s range, my visit to the Group Health gynecologist had me pegging in at 143/83. A week later visiting the surgeon I was up to 150+/80+. But today for my visit with Dr. F, I was back down to 127/82 or thereabouts. It’s amazing what anxiety can do to you. My weight has also been going down on each visit. I was down to 127 pounds today, and started at a little over 131 a couple weeks ago. It’s probably due to the diet adjustments I’ve made, so I’d better make sure to eat a little more heartily.
I have filled out my medical history at least four times in the last week. Thank goodness I haven’t had many illnesses and don’t take any medications. If I did, it would take forever to dredge up all that material over and over. I had passing feelings of being a cog in a very large machine, being shoved along the conveyor belt. The attitude of the staff in each of the offices makes a huge difference in counteracting this feeling.
I have also come to a new understanding of the words “living with cancer.” I had heard that phrase, and always thought of it as telling you that cancer is something that once you have it, you are never totally free of. But I have discovered in the last week that it’s also a presence that intrudes on your thoughts constantly. I have found myself seeking activities that will give me a good solid 15 minutes where I don’t think about my cancer. The best activities are ones that keep me “cancer-thought free” for even longer, like our tango lesson last night. I am sure this will change over time, but it certainly becomes a huge presence in your life. Imagine anything else that would think about that frequently, and the impact it would have on you.
The Pad Dilemma!
This one’s for the women. Men, you might be able to empathize if you imagine buying little packets of razor blades, with the blades wrapped so that you can't see them and won't know whether they fit until you unwrap them (and thus can't return them).
Sooo, when I began having some bleeding and I decided I needed something to protect my underpants and clothing from embarrassing overflows, I found myself standing in the “feminine care” section of the store, perusing my options. After 14 years of not using feminine care products I was overwhelmed by my choices. Actually, it’s been way more than 14 years, since what I was examining was pads, and what I had always used was tampons. But my body doesn’t seem to want to use tampons right now, so I’m back to the external solution: pads.
To begin with, when my bleeding began, I had been a good scout and was prepared. I just happened to have some old pads (and a small load of tampons of various sizes) that I simply couldn’t bring myself to discard when I finished menopause, so I kept them around for the odd friend who might have an emergency. At least so I thought. So there was my supply, sitting at the ready, when I turned out to be the “odd friend.” I had a great supply of tampons of every conceivable size, but for some reason the only pads I had were nice and thick. Okay for an emergency, but I soon realized that I didn’t need anything that substantial and would definitely prefer something a little more svelte, so I would feel less like I was carrying an elephant around in my underpants. So off I went to the store to survey my options.
Oh my gosh, the options! First pick a brand—the store brand, the big traditional brands like Kotex, or one of the newcomers that I didn’t know. After a couple of purchases, which I took home and tried, I settled on one particular brand. But the experiment continued, because what I first bought was still much thicker than I wanted. The next purchase turned out to be too thin. The basic problem was that the individual pads were wrapped discretely in thin yellow plastic (rendering them invisible), and then those were bundled inside a second plastic wrap, which showed you small flashes of the yellow wrappings. No way to discern what was actually inside. So then I went into deep study mode. I picked up several different packages, reading them VERY carefully, and slowly discerned the code.
My chosen “brand” is Always. So the first choice is whether you want the plain Always or Always Fresh. I haven’t yet figured out the difference. Next, do you want something that will deal with Light, Moderate, Heavy, Overnight, or Maximum flow. The choice is pretty easy, but this grading is not so easy to find on the package—you have to look on the side of the package for the clever display where the level of the product you’ve picked up is highlighted. Next, do you want the “Maxi,” “Ultrathin,” or “Ultrathin with Flexiwings.” I’m serious. These categories seem to have to do with design of the shape of the pad, though I haven’t quite sussed out the difference between Maxi and Ultrathin. But the Flexiwings are cute little pieces of plastic that stick out of the sides of the pad and can be bent around to the outside surface of your underpants to protect them. The picture on the front of the package gives you some guidance here. Finally, do you want Super Long, Long, Regular or Slender/petite. This final category gives you a feel for the overall LENGTH of the pad, front to back. Look for this choice in a series of pictures on the front of the package, where the “regular” looks so short that it wouldn’t cover anything compared to the two other sizes. However, I’ve been getting the “regular” size and can tell you that they actually cover the bottom of my underpants quite generously from front to back. I can’t even imagine the coverage one would achieve with the SuperLong, but it must be bellybutton to midback!
After considerable experimentation, my chosen selection is the Always Ultrathin (without flexiwings), Moderate, Regular. I have to write it down so I can be sure I am getting the one I want. And it still takes me a good five minutes in the store to make sure that that is what I have picked up (just made a trip back to Safeway to return a package that I thought was the correct one, but turned out to have those cute little Flexiwings, which I didn’t want).
By the way, I extend my compliments to the Always producers. They give you the pads in a cleverly designed wrapping, with the pad neatly folded in thirds, secured by a small piece of tape. When you gently unfold your pad, and then pull off the external plastic wrapping, you are left with your pad and its adhesive backing ready to be neatly laid out in your panties, no fuss or muss. The pad includes a nice plastic surface on the bottom, so you can be assured that you will remain decorous while wearing it. AND, you can even use the pretty yellow wrapping to wrap around your discarded pad, making the whole process as discrete as can be mustered. However, do NOT make the mistake of allowing the unwrapped pad to flip on to a counter top. If that happens, the adhesive on the bottom wants to adhere to the counter just as strongly as it would your panties, so when you remove it, you are left with a few little rips in the plastic (of course, I learned this the hard way). Discard that pad, or take your chances if you like living dangerously!
Ladies, pad selection is a serious and complex business. Be sure to allow at least 15 minutes to read all the labels and ensure that you have selected exactly the right product for you. And enjoy those creative illustrations!
Sooo, when I began having some bleeding and I decided I needed something to protect my underpants and clothing from embarrassing overflows, I found myself standing in the “feminine care” section of the store, perusing my options. After 14 years of not using feminine care products I was overwhelmed by my choices. Actually, it’s been way more than 14 years, since what I was examining was pads, and what I had always used was tampons. But my body doesn’t seem to want to use tampons right now, so I’m back to the external solution: pads.
To begin with, when my bleeding began, I had been a good scout and was prepared. I just happened to have some old pads (and a small load of tampons of various sizes) that I simply couldn’t bring myself to discard when I finished menopause, so I kept them around for the odd friend who might have an emergency. At least so I thought. So there was my supply, sitting at the ready, when I turned out to be the “odd friend.” I had a great supply of tampons of every conceivable size, but for some reason the only pads I had were nice and thick. Okay for an emergency, but I soon realized that I didn’t need anything that substantial and would definitely prefer something a little more svelte, so I would feel less like I was carrying an elephant around in my underpants. So off I went to the store to survey my options.
Oh my gosh, the options! First pick a brand—the store brand, the big traditional brands like Kotex, or one of the newcomers that I didn’t know. After a couple of purchases, which I took home and tried, I settled on one particular brand. But the experiment continued, because what I first bought was still much thicker than I wanted. The next purchase turned out to be too thin. The basic problem was that the individual pads were wrapped discretely in thin yellow plastic (rendering them invisible), and then those were bundled inside a second plastic wrap, which showed you small flashes of the yellow wrappings. No way to discern what was actually inside. So then I went into deep study mode. I picked up several different packages, reading them VERY carefully, and slowly discerned the code.
My chosen “brand” is Always. So the first choice is whether you want the plain Always or Always Fresh. I haven’t yet figured out the difference. Next, do you want something that will deal with Light, Moderate, Heavy, Overnight, or Maximum flow. The choice is pretty easy, but this grading is not so easy to find on the package—you have to look on the side of the package for the clever display where the level of the product you’ve picked up is highlighted. Next, do you want the “Maxi,” “Ultrathin,” or “Ultrathin with Flexiwings.” I’m serious. These categories seem to have to do with design of the shape of the pad, though I haven’t quite sussed out the difference between Maxi and Ultrathin. But the Flexiwings are cute little pieces of plastic that stick out of the sides of the pad and can be bent around to the outside surface of your underpants to protect them. The picture on the front of the package gives you some guidance here. Finally, do you want Super Long, Long, Regular or Slender/petite. This final category gives you a feel for the overall LENGTH of the pad, front to back. Look for this choice in a series of pictures on the front of the package, where the “regular” looks so short that it wouldn’t cover anything compared to the two other sizes. However, I’ve been getting the “regular” size and can tell you that they actually cover the bottom of my underpants quite generously from front to back. I can’t even imagine the coverage one would achieve with the SuperLong, but it must be bellybutton to midback!
After considerable experimentation, my chosen selection is the Always Ultrathin (without flexiwings), Moderate, Regular. I have to write it down so I can be sure I am getting the one I want. And it still takes me a good five minutes in the store to make sure that that is what I have picked up (just made a trip back to Safeway to return a package that I thought was the correct one, but turned out to have those cute little Flexiwings, which I didn’t want).
By the way, I extend my compliments to the Always producers. They give you the pads in a cleverly designed wrapping, with the pad neatly folded in thirds, secured by a small piece of tape. When you gently unfold your pad, and then pull off the external plastic wrapping, you are left with your pad and its adhesive backing ready to be neatly laid out in your panties, no fuss or muss. The pad includes a nice plastic surface on the bottom, so you can be assured that you will remain decorous while wearing it. AND, you can even use the pretty yellow wrapping to wrap around your discarded pad, making the whole process as discrete as can be mustered. However, do NOT make the mistake of allowing the unwrapped pad to flip on to a counter top. If that happens, the adhesive on the bottom wants to adhere to the counter just as strongly as it would your panties, so when you remove it, you are left with a few little rips in the plastic (of course, I learned this the hard way). Discard that pad, or take your chances if you like living dangerously!
Ladies, pad selection is a serious and complex business. Be sure to allow at least 15 minutes to read all the labels and ensure that you have selected exactly the right product for you. And enjoy those creative illustrations!
Saturday, March 15, 2008
The First Week
On a few occasions I have wondered how I would react if given the news that I had cancer. Now I know.
A week ago Friday morning I received that news that no one ever wants to hear. I made the call to my doctor sitting outside in a public space at Tacoma Community College, where I was attending a conference. It was a beautiful, slightly cool day with a sunny blue sky—a day to savor. After she informed me that the previous day’s biopsy had shown that I had uterine cancer and that I was to get in immediately to see a gynecologist, I closed my cell phone, I said a couple of hearty “damns” to myself (after all, you’re not going to shout in a public space), followed by “how could you do this to me after all I’ve done to take care of you?” to my body. I then took a few minutes to look at the sky and decided to get on with it. Which at that moment meant going to the rest of the day’s conference sessions, and in between making calls to set up an appointment with a gynecologist at Group Health who would tell me more about my diagnosis and plan of treatment.
This past week has been an incredible flurry of learning, thinking, emotional ups and downs, troubled sleep, and discovery of all the resources and friends I have to help me. I met with a friend who has also gone through cancer to learn about her diet-related activities. I pulled all kinds of information off the internet, quickly discovering that it was going to be easy to be both overwhelmed by the amount available and pulled in many directions by conflicting opinions. I alternated between feeling organized, prepared and optimistic and frantic, ignorant and unsure. I did not think much about dying. I focused mostly on what my options would be, how quickly I’d be able to recover, what treatments I might be asked to undergo and how hard I might have to fight to use a combination of western medical and naturopathic approaches.
In the first couple days, I shared my news with just a few people, people I thought might be able to lead me to resources. And they did. I also quickly discovered that nearly everyone I talked to had a very useful piece of information for me—as well as unqualified support. I am extremely fortunate to be in Seattle, center of nationally recognized medical expertise and research as well as naturopathic and holistic approaches. What is not so good is that there is still not much integration of these resources—you are mostly on your own to pull it together. Which takes both energy and time along with determination.
It was a week of discovering many synchronicities too. One of my rowing buddies is a surgical nurse at UW. She cleared the way for me to get a second opinion from a nationally known surgeon there. A former Fielding classmate is a breast cancer surgeon, and highly recommended a group of specialists working with Swedish. On Monday morning I found out that because Group Health, my primary health care provider, is backed up, I was being referred to that very same group for my surgery. A Chinese Medicine and acupuncture specialist my surgeon friend recommended turned out to have her practice two blocks from my house.
The hardest parts of the week were telling Phil, Guy, and Shana. The best parts of the week were receiving the love and support from everyone I shared my news with, along with finding that I would be working with some excellent surgeons.
One of the tough parts of the process is to be aggressive about getting what you want: pushing the 2nd opinion referral through, opting out of the 1st physician I was scheduled to see at the specialists because he didn’t know how to do the robot-assisted surgery that I want to be evaluated for, navigating between the desires for fairly comprehensive records expressed by the Chinese medicine specialist and the insistence of the Group Health nurse that an acupuncturist didn’t need to know that much. I really don’t enjoy that, so have to push myself each time to do it. And it appears there will be lots of little battles to be fought. And lots to learn about how to make the system work for you.
It’s also hard to figure out how to tell people the news. What’s an introductory line that lets them know something negative is coming, but doesn’t blast them away? Do I have bad news, upsetting news, disturbing news, or unhappy news? Do I feel more comfortable saying “I have cancer” or “I have been diagnosed with cancer?” Does it even matter?
It is hard having say it over and over to different people, and challenging to keep yourself together when others fall apart. Maybe falling apart isn’t such a bad idea for me to either, but I haven’t cried yet. I also haven’t wanted to punch out anyone or anything. Perhaps that will come later. I do think I am going through the grief stages, the first of which is denial, and a bit of shock. There’s more than a good bit of that at play.
Then there are the logistics of figuring out who to tell and when. Do I tell Shana before or after her exams? (after, I decided). Do I tell my parents before or after my stepmother’s big 90th birthday part celebration next week? (after, I’m thinking—no need to spoil the party.) I have realized two things. I am going to need to have Phil share the burden—I am simply not going to have the emotional energy to say my news over and over again, and deal with the reactions.
About Thursday, after telling several people, and already having some of them check back in with me to see how things were going, I also realized that keeping people up to date is going to be a significant task and energy drain—hence, the idea to start a blog. The reactions have been funny. Both my kids were there before I mentioned it, and think it’s a terrific idea. Many of my friends from my generation with whom I’ve shared the idea look at me like I might be a bit daft, though some think it should work. We shall see.
So here I am at the end of week 1, with several things in place:
1. I have appointments next week to see the surgeon, the specialist at the UW for a 2nd opinion, and the Chinese medicine specialist.
A week ago Friday morning I received that news that no one ever wants to hear. I made the call to my doctor sitting outside in a public space at Tacoma Community College, where I was attending a conference. It was a beautiful, slightly cool day with a sunny blue sky—a day to savor. After she informed me that the previous day’s biopsy had shown that I had uterine cancer and that I was to get in immediately to see a gynecologist, I closed my cell phone, I said a couple of hearty “damns” to myself (after all, you’re not going to shout in a public space), followed by “how could you do this to me after all I’ve done to take care of you?” to my body. I then took a few minutes to look at the sky and decided to get on with it. Which at that moment meant going to the rest of the day’s conference sessions, and in between making calls to set up an appointment with a gynecologist at Group Health who would tell me more about my diagnosis and plan of treatment.
This past week has been an incredible flurry of learning, thinking, emotional ups and downs, troubled sleep, and discovery of all the resources and friends I have to help me. I met with a friend who has also gone through cancer to learn about her diet-related activities. I pulled all kinds of information off the internet, quickly discovering that it was going to be easy to be both overwhelmed by the amount available and pulled in many directions by conflicting opinions. I alternated between feeling organized, prepared and optimistic and frantic, ignorant and unsure. I did not think much about dying. I focused mostly on what my options would be, how quickly I’d be able to recover, what treatments I might be asked to undergo and how hard I might have to fight to use a combination of western medical and naturopathic approaches.
In the first couple days, I shared my news with just a few people, people I thought might be able to lead me to resources. And they did. I also quickly discovered that nearly everyone I talked to had a very useful piece of information for me—as well as unqualified support. I am extremely fortunate to be in Seattle, center of nationally recognized medical expertise and research as well as naturopathic and holistic approaches. What is not so good is that there is still not much integration of these resources—you are mostly on your own to pull it together. Which takes both energy and time along with determination.
It was a week of discovering many synchronicities too. One of my rowing buddies is a surgical nurse at UW. She cleared the way for me to get a second opinion from a nationally known surgeon there. A former Fielding classmate is a breast cancer surgeon, and highly recommended a group of specialists working with Swedish. On Monday morning I found out that because Group Health, my primary health care provider, is backed up, I was being referred to that very same group for my surgery. A Chinese Medicine and acupuncture specialist my surgeon friend recommended turned out to have her practice two blocks from my house.
The hardest parts of the week were telling Phil, Guy, and Shana. The best parts of the week were receiving the love and support from everyone I shared my news with, along with finding that I would be working with some excellent surgeons.
One of the tough parts of the process is to be aggressive about getting what you want: pushing the 2nd opinion referral through, opting out of the 1st physician I was scheduled to see at the specialists because he didn’t know how to do the robot-assisted surgery that I want to be evaluated for, navigating between the desires for fairly comprehensive records expressed by the Chinese medicine specialist and the insistence of the Group Health nurse that an acupuncturist didn’t need to know that much. I really don’t enjoy that, so have to push myself each time to do it. And it appears there will be lots of little battles to be fought. And lots to learn about how to make the system work for you.
It’s also hard to figure out how to tell people the news. What’s an introductory line that lets them know something negative is coming, but doesn’t blast them away? Do I have bad news, upsetting news, disturbing news, or unhappy news? Do I feel more comfortable saying “I have cancer” or “I have been diagnosed with cancer?” Does it even matter?
It is hard having say it over and over to different people, and challenging to keep yourself together when others fall apart. Maybe falling apart isn’t such a bad idea for me to either, but I haven’t cried yet. I also haven’t wanted to punch out anyone or anything. Perhaps that will come later. I do think I am going through the grief stages, the first of which is denial, and a bit of shock. There’s more than a good bit of that at play.
Then there are the logistics of figuring out who to tell and when. Do I tell Shana before or after her exams? (after, I decided). Do I tell my parents before or after my stepmother’s big 90th birthday part celebration next week? (after, I’m thinking—no need to spoil the party.) I have realized two things. I am going to need to have Phil share the burden—I am simply not going to have the emotional energy to say my news over and over again, and deal with the reactions.
About Thursday, after telling several people, and already having some of them check back in with me to see how things were going, I also realized that keeping people up to date is going to be a significant task and energy drain—hence, the idea to start a blog. The reactions have been funny. Both my kids were there before I mentioned it, and think it’s a terrific idea. Many of my friends from my generation with whom I’ve shared the idea look at me like I might be a bit daft, though some think it should work. We shall see.
So here I am at the end of week 1, with several things in place:
1. I have appointments next week to see the surgeon, the specialist at the UW for a 2nd opinion, and the Chinese medicine specialist.
2. I have shared the news with my WELA Board, to whom I report for the leadership program, and the THS board, where I volunteer, so they both know why my work will be impacted. I also shared it with my Spanish instructor, as he was ready to schedule my next lesson. So the major outside commitments are on board.
3. My immediate family and a few of my friends know, and are providing wonderful support.
4. I know the primary remaining “vacancy” in my treatment team is a naturopath, and hope to get settled this weekend on who to approach. I also got some help from one person on how best to coordinate the work of that team.
5. I am still rowing, going to Tango and Spanish lessons, walking, working out and doing yoga. I did have to curtail the amount I did a couple days when I had gotten very little sleep and was pretty tired. I am also getting a few things related to WELA and THS done.
6. As far as I know, I am still going to be able to put off the surgery for a week so I can go to California and celebrate Dene’s birthday on March 22nd. I’ll know more on Monday after I see the surgeon. The Group Health gynecologist didn’t think a week would make that much difference, and it means a lot to me to be with the family, especially now.
7. I think I am beginning to settle down and sleep better. I suspect that ability may still go up and down as I go through next week, but I really want to be well rested for the surgery.
In a short week I have begun to experience what an incredible journey it is to be diagnosed with cancer. I can also see that there is some significant learning for me that will come out of this--about love, friends and life.
More posts to come as I have significant news to share. So to close this extended first posting, here are a couple of pictures that show what I plan to get back to: catching crab on our sailboat and rowing.
That's me in the bow.
And a third photo showing my close-in support system and the reason I intend to stick around: my family.
Thank you everyone for your help and love this week.
In a short week I have begun to experience what an incredible journey it is to be diagnosed with cancer. I can also see that there is some significant learning for me that will come out of this--about love, friends and life.
More posts to come as I have significant news to share. So to close this extended first posting, here are a couple of pictures that show what I plan to get back to: catching crab on our sailboat and rowing.
That's me in the bow.
And a third photo showing my close-in support system and the reason I intend to stick around: my family.
Thank you everyone for your help and love this week.
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