Today is Memorial Day. That makes it an excellent day for reflection and for appreciating the sacrifices others have made so that I can have all the options that I do. It’s easy to forget how fortunate I am to be able to deal with my cancer in a variety of ways instead of having no other choice but to yield to it.
Today I chose alternative therapies--those being wine, chocolate and good company. Chuck and I met our friends Ken and Scott at Chateau Lorane and we enjoyed their art show and live music while we (Ken, Scott and I) tasted a variety of wines. After that, we drove further north and visited Sweet Cheeks winery where we had more wine and a delightful picnic that Ken had prepared for us. Sweet Cheeks has a view to rival King Estates and that’s saying a lot. It was a perfect setting for a picnic and the weather couldn’t have been nicer.
We ended our tour at another winery and then headed home. I realized that I had spent the better part of a day not thinking about cancer. It feels a little like ending a relationship. The “divorce” isn’t final yet but the process is under way. It’s like that first time when you go a whole day and realize that you didn’t waste a bit of it being angry or brooding about what he did or didn’t do; what he’s going to do next; he’s moved out and it’s over or at least starting to be over. The tumor is gone and it’s time to clean up the debris that’s left but that doesn’t mean thinking about it non-stop. That makes this a very good day!
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Monday, May 25, 2009
Thursday, May 21, 2009
I'll Be Your Captain
Yesterday I saw my chemo doctor, Dr. Cho. I expressed my concern that I don’t have a Team Captain and he said, “I’ll be your captain!” That was very reassuring.
Unfortunately, everything he had to tell us wasn’t so reassuring. He confirmed the good news about my clear lymph nodes and clean tumor margins. Those factors bode well for the success of my treatment. On the other hand, my prognosis is not as good as I had thought. The outlook if my treatment is not successful and my cancer recurs is grim. This is mostly due to the fact that my cancer is triple negative and so the various long term treatments hold no promise for me. There is little that can be done if the cancer does spread to my brain or bones. If it recurs locally, there is a better chance that treatment could work.
Dr. Cho brought up charts and graphs tailored for my age, health and type of cancer and it breaks out this way: One third are cured with no additional treatment, one third have recurrences, one third die of other causes within ten years. (Which, I assume, means they didn't have a recurrence?) If I have chemo, my odds are increased by about 7 ½ %. That puts my survival potential at about 40% -- give or take a percent. That is lower than I would have hoped, but Dr. Cho reminded us that I beat much worse odds 13 years ago. On the other hand, the fact that this is my second bout with cancer indicates that my body is not very good at defending against cancer cells. That is an even stronger indication that I need all the help I can get and for me that means chemo and radiation. To not put up a vigorous defense now would be a mistake and one I don’t want to have to regret down the road.
I will have my first chemo treatment next Thursday, May 28th, with three more courses at three week intervals. Before that I will have a MUGA scan which is a test to determine if my heart is strong enough to handle the Adriamycin again. It is the best chemo for my type cancer, but is very hard on the heart. Since I had it before, we need to be sure that there wasn’t significant damage the last time around. If my heart isn’t strong enough, we will have to consider a lesser chemo.
I was sick and nauseous all day yesterday. I woke up in the night to throw up. I was dreaming about chemo. I don’t know if I felt nauseous and that made me dream about chemo or if I dreamed about chemo and that made me nauseous. The triage nurse, Val, gave us a tour of the chemo suite and it was all I could do not to throw up again. It will be difficult to be there for three or more hours while I have my treatment.
Dr. Cho gave me prescriptions for Compazine and Ativan to take during my treatments and they will put anti-nausea drugs in my drip when I have treatments. They also give a new drug to boost the blood counts. I won’t have to go in for daily shots of Neupagen like I did last time. It’s a small thing, but I’m grateful.
,
Unfortunately, everything he had to tell us wasn’t so reassuring. He confirmed the good news about my clear lymph nodes and clean tumor margins. Those factors bode well for the success of my treatment. On the other hand, my prognosis is not as good as I had thought. The outlook if my treatment is not successful and my cancer recurs is grim. This is mostly due to the fact that my cancer is triple negative and so the various long term treatments hold no promise for me. There is little that can be done if the cancer does spread to my brain or bones. If it recurs locally, there is a better chance that treatment could work.
Dr. Cho brought up charts and graphs tailored for my age, health and type of cancer and it breaks out this way: One third are cured with no additional treatment, one third have recurrences, one third die of other causes within ten years. (Which, I assume, means they didn't have a recurrence?) If I have chemo, my odds are increased by about 7 ½ %. That puts my survival potential at about 40% -- give or take a percent. That is lower than I would have hoped, but Dr. Cho reminded us that I beat much worse odds 13 years ago. On the other hand, the fact that this is my second bout with cancer indicates that my body is not very good at defending against cancer cells. That is an even stronger indication that I need all the help I can get and for me that means chemo and radiation. To not put up a vigorous defense now would be a mistake and one I don’t want to have to regret down the road.
I will have my first chemo treatment next Thursday, May 28th, with three more courses at three week intervals. Before that I will have a MUGA scan which is a test to determine if my heart is strong enough to handle the Adriamycin again. It is the best chemo for my type cancer, but is very hard on the heart. Since I had it before, we need to be sure that there wasn’t significant damage the last time around. If my heart isn’t strong enough, we will have to consider a lesser chemo.
I was sick and nauseous all day yesterday. I woke up in the night to throw up. I was dreaming about chemo. I don’t know if I felt nauseous and that made me dream about chemo or if I dreamed about chemo and that made me nauseous. The triage nurse, Val, gave us a tour of the chemo suite and it was all I could do not to throw up again. It will be difficult to be there for three or more hours while I have my treatment.
Dr. Cho gave me prescriptions for Compazine and Ativan to take during my treatments and they will put anti-nausea drugs in my drip when I have treatments. They also give a new drug to boost the blood counts. I won’t have to go in for daily shots of Neupagen like I did last time. It’s a small thing, but I’m grateful.
,
Monday, May 18, 2009
Apple Pancakes Defy Guilt
Today was another trip to town for a peek at my arm pit. The swelling is subsiding and the redness is going away. Damon was pleased with my progress. I will go back in two weeks for Dr. K to take a look and determine if everything is healing and looking normal. I have a rather large firm lump developing under the breast incision which Damon says is scar tissue. Great. Just what I need. A new lump!
We had an early appointment so arranged to meet our friends Ken and Frank for breakfast at the Old Pancake House. I got to indulge in a giant apple pancake which is about the equivalent of eating an apple pie by myself. It was delicious and guilt producing at the same time. Fortunately the pleasure outweighed the guilt.
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We had an early appointment so arranged to meet our friends Ken and Frank for breakfast at the Old Pancake House. I got to indulge in a giant apple pancake which is about the equivalent of eating an apple pie by myself. It was delicious and guilt producing at the same time. Fortunately the pleasure outweighed the guilt.
.
Wednesday, May 13, 2009
Support Groups
I have been checking out support groups. A recent visit to my old gynecological support group in Eugene reminded me why I value support groups. Some of the people were the same and some were ‘newbies’ but they are all struggling with the same disease--just different stages and versions of a fairly similar story. They have a certain look in common. It’s the survivor look. You can see they have seen the dragon and faced him down. It seems impossible that they can look both frail and incredibly strong but they do. Their bodies may be weak but their spirits are fierce. I love their ability to see the stark truth and still refuse to be a statistic. They are courageous and infuse me with their unique realistic optimism. I realize how much I have missed them.
I had lunch with a group of breast cancer survivors. My contact with Reach for Recovery (Sandy) introduced me to this once a month luncheon group. Most of them are years out from their diagnosis and treatment and that is encouraging. They represent a spectrum of ages and a variety of experiences. It seems that all sorts of choices can lead to recovery and a reasonably full life.
The weekly cancer group that meets in Eugene is younger, on average, and most are still in treatment. There is a greater sense of urgency because decisions are still being made and members of the group are seeking information. That group also has a moderator who keeps things moving and on target.
The forth group is a dinner group of long time survivors. My friend Carolyn introduced me to this group. The women are warm and welcoming. As a ‘newbie’ to breast cancer, I may not fit in as well but we are similar in age and attitude. At least that was how I felt after one dinner with them.
I doubt I will want to maintain four support groups although three of them only meet once at month. I do know that support is an important component of recovery for me so I can be a visitor for a while and see which one(s) work best.
.
I had lunch with a group of breast cancer survivors. My contact with Reach for Recovery (Sandy) introduced me to this once a month luncheon group. Most of them are years out from their diagnosis and treatment and that is encouraging. They represent a spectrum of ages and a variety of experiences. It seems that all sorts of choices can lead to recovery and a reasonably full life.
The weekly cancer group that meets in Eugene is younger, on average, and most are still in treatment. There is a greater sense of urgency because decisions are still being made and members of the group are seeking information. That group also has a moderator who keeps things moving and on target.
The forth group is a dinner group of long time survivors. My friend Carolyn introduced me to this group. The women are warm and welcoming. As a ‘newbie’ to breast cancer, I may not fit in as well but we are similar in age and attitude. At least that was how I felt after one dinner with them.
I doubt I will want to maintain four support groups although three of them only meet once at month. I do know that support is an important component of recovery for me so I can be a visitor for a while and see which one(s) work best.
.
Tuesday, May 12, 2009
Fluids tend to congregate
Fluids tend to congregate. It seems they love to find a vacant space and move in. These past few days they have gathered in my arm pit. Not a pretty sight.
Friday we went back to Dr. Kollmorgan’s office and her assistant drained a big vial of fluid from the baseball size lump under my arm where the lymph node incision is. Over the week end, the congregating fluids gathered again.
We went back in yesterday and saw the assistant again. He thought there was no point draining again since the fluids filled the space so quickly. Now, since that the lump is red and angry looking and my temp is slightly elevated, he consulted with Dr. K. and decided to put me on a course of antibiotics. I will go back next Monday for another look and the hope is that the problem will resolve itself.
Meanwhile, I can put ice on it and avoid using my right arm. That’s not terribly convenient. Try putting a cold compress under your arm and you’ll see what I mean. The not doing anything part isn’t as easy as it sounds either. It seems like an invitation/authorization to loaf, but that’s not as much fun as it sounds. If there is something that I want or need to do, I have to either ignore it or ask Chuck to do it for me.
If I felt ‘sicker’, I could just sleep, read and watch tv. The problem is I feel pretty good except for the pain under my arm which is manageable. This seems like a time I could get some things done but instead I’m supposed to take it easy. This is very frustrating. My window of feeling good is going to be wasted because of some stupid congregating fluid. I am not a happy camper and that makes me feel guilty because I should still be on a high because of the good news about my clear lymph nodes.
Okay, deep breath. I am happy and grateful and done whining for now anyway.
.
Friday we went back to Dr. Kollmorgan’s office and her assistant drained a big vial of fluid from the baseball size lump under my arm where the lymph node incision is. Over the week end, the congregating fluids gathered again.
We went back in yesterday and saw the assistant again. He thought there was no point draining again since the fluids filled the space so quickly. Now, since that the lump is red and angry looking and my temp is slightly elevated, he consulted with Dr. K. and decided to put me on a course of antibiotics. I will go back next Monday for another look and the hope is that the problem will resolve itself.
Meanwhile, I can put ice on it and avoid using my right arm. That’s not terribly convenient. Try putting a cold compress under your arm and you’ll see what I mean. The not doing anything part isn’t as easy as it sounds either. It seems like an invitation/authorization to loaf, but that’s not as much fun as it sounds. If there is something that I want or need to do, I have to either ignore it or ask Chuck to do it for me.
If I felt ‘sicker’, I could just sleep, read and watch tv. The problem is I feel pretty good except for the pain under my arm which is manageable. This seems like a time I could get some things done but instead I’m supposed to take it easy. This is very frustrating. My window of feeling good is going to be wasted because of some stupid congregating fluid. I am not a happy camper and that makes me feel guilty because I should still be on a high because of the good news about my clear lymph nodes.
Okay, deep breath. I am happy and grateful and done whining for now anyway.
.
Thursday, May 7, 2009
Good, Good, Good, Good Vibrations
No rabbits died or were endangered in any way in the production of this good, good news. Dr. Kollmorgan confirmed that there was NO cancer in the lymph nodes taken during my surgery. Furthermore, the margins of the tumor she removed were clean and cancer free. I have Stage 2 (2.7 cm tumor), Type 3, Triple negative infiltrating ductal cancer. That’s a lot of information, most of which we would not even have understood six weeks ago.
The bottom line is that the news could not have been better and we are relieved, delighted, giddy and grateful. We know that this wonderful result is due to the prayers and good wishes of many, many people. Had the news been bad we would have simply believed this was a different kind of answer...one that we might not understand but that was still part of some larger plan. There is still a larger plan but while we are waiting for that to be defined we will stick to making smaller plans. Those will include chemo therapy and radiation for purely precautionary purposes. Since my cancer is aggressive, we want to be sure there are no cells lurking about ready to mess with our success.
Meanwhile, it’s ok to be happy while I mend and recover from surgery. There’s a sunny weekend in the forecast and a healing body can always use a little deck time.
.
The bottom line is that the news could not have been better and we are relieved, delighted, giddy and grateful. We know that this wonderful result is due to the prayers and good wishes of many, many people. Had the news been bad we would have simply believed this was a different kind of answer...one that we might not understand but that was still part of some larger plan. There is still a larger plan but while we are waiting for that to be defined we will stick to making smaller plans. Those will include chemo therapy and radiation for purely precautionary purposes. Since my cancer is aggressive, we want to be sure there are no cells lurking about ready to mess with our success.
Meanwhile, it’s ok to be happy while I mend and recover from surgery. There’s a sunny weekend in the forecast and a healing body can always use a little deck time.
.
Wednesday, May 6, 2009
When Is Cancer Gone?
When is cancer gone? This is a question we discussed at my new breast cancer support group. Is it when you are through with your treatments? When the tests can’t detect it? Is it when you have survived a fixed number of years or follow up exams without any evidence of disease? There is a word for that. NED is the word. No Evidence of Disease.
For some, the answer is never. Once you have had cancer or The Cancer as many call it, you always know in your bones that it is just lurking in there somewhere waiting to emerge when you relax enough to almost believe you are truly cancer free. For others, the first chance they get they put cancer in the past tense and keep it there. “Something that happened to me once, long ago…”
When we first moved to Oregon, three years after my treatment for uterine cancer ended, I still needed that annual confirmation that a CT scan gave me. Still NED. A physical exam, PAP smear and CA-125 added to the confirmation. Still NED. My anxiety levels always soared just before my annual checkup. With the NED confirmation, I could relax for another ten or eleven months before I started worrying again. As the years passed, cancer did become less and less of a presence in my daily life. I allowed myself to think that I was done with cancer. Unfortunately, cancer wasn’t done with me.
I think it is different for each of us but in the end, cancer is only truly gone when you decide it’s gone. As long as it controls your daily decisions about what you can and can’t do or can or can’t plan for, it is in charge. As long as you allow it to dominate your life, it will. Of course, there is no choice when you are in treatment. Appointments and the realities of treatment will rule each day. But once you are done with treatment and there is no longer a schedule, a plan, an activity that serves in the battle—what then? It leaves a hole in your life that is too often filled with obsessive thoughts of cancer. What should you be doing? What should you be eating? Is your spiritual house in order? Every single one of these worries comes back around to cancer. We need to find something better to fill the void when treatment ends. I’ll have some time to think about just what that will be.
When I’m done with treatment, I want to be done with cancer. I want to banish it and believe it so firmly that it is no longer the dominant theme of my daily life. I wonder if that’s possible. Maybe cancer will always be part of my daily thinking and planning but I’m hoping it will play a minor role and not be the star of my story.
.
For some, the answer is never. Once you have had cancer or The Cancer as many call it, you always know in your bones that it is just lurking in there somewhere waiting to emerge when you relax enough to almost believe you are truly cancer free. For others, the first chance they get they put cancer in the past tense and keep it there. “Something that happened to me once, long ago…”
When we first moved to Oregon, three years after my treatment for uterine cancer ended, I still needed that annual confirmation that a CT scan gave me. Still NED. A physical exam, PAP smear and CA-125 added to the confirmation. Still NED. My anxiety levels always soared just before my annual checkup. With the NED confirmation, I could relax for another ten or eleven months before I started worrying again. As the years passed, cancer did become less and less of a presence in my daily life. I allowed myself to think that I was done with cancer. Unfortunately, cancer wasn’t done with me.
I think it is different for each of us but in the end, cancer is only truly gone when you decide it’s gone. As long as it controls your daily decisions about what you can and can’t do or can or can’t plan for, it is in charge. As long as you allow it to dominate your life, it will. Of course, there is no choice when you are in treatment. Appointments and the realities of treatment will rule each day. But once you are done with treatment and there is no longer a schedule, a plan, an activity that serves in the battle—what then? It leaves a hole in your life that is too often filled with obsessive thoughts of cancer. What should you be doing? What should you be eating? Is your spiritual house in order? Every single one of these worries comes back around to cancer. We need to find something better to fill the void when treatment ends. I’ll have some time to think about just what that will be.
When I’m done with treatment, I want to be done with cancer. I want to banish it and believe it so firmly that it is no longer the dominant theme of my daily life. I wonder if that’s possible. Maybe cancer will always be part of my daily thinking and planning but I’m hoping it will play a minor role and not be the star of my story.
.
Tuesday, May 5, 2009
Caution - Amazon Emerging
In the waking moments there is a brief time when possibilities emerge--when the body is not yet awake enough to take inventory of pains and aches—-when dreams still seem as real as the waking world. That is when we think that something bad must have just been a dream. In that moment, I reach for my breast and find it still tender and compromised. It’s not gone but the shape has changed and stitches define the upper boundary between breast and what? Chest? No, that’s not right. Between breast and all the flesh between there and where the neck starts.
Tape still clings tightly to the stitches and I try to resist picking at it. I don’t want to unravel myself prematurely. The incision is five and a half inches long. The scar will ride fairly straight across the top of my right breast. It has a slight curve that makes it look like an upside down smiley. The scar in my arm pit where they removed the lymph nodes is two and a half inches long. There is another smaller one and a half inch scar high over my left breast where my port used to be. That port made it easier to gain direct access to a vein when I had my chemo thirteen years ago. No one has mentioned a port yet for this round of chemo.
I worry that it will be harder to catch a vein now since they can’t use my right arm. That’s a new rule for me now. No pokes, sticks or blood pressure for the right arm. There is a risk of lymphedema and even garden scratches are to be avoided. I saw a pamphlet. Lymphedema is definitely something to avoid. There are pictures of women with arms or legs that look like elephantitis. Once you get it, it‘s very hard to get rid of it. It’s not fluid that you can just drain away. It’s more like stubborn webbing that stays put once it takes up residence. Something else to worry about…
There is another scar that starts at the top of my right shoulder and extends seven inches or so down about half way to my elbow. That’s from my shoulder replacement surgery. When I look in the mirror, I think I look like I lost a sword fight. Maybe since I am still standing, I should start thinking that I won a sword fight. There’s an image. Conquering Amazon with sword raised high (in my left hand of course). “Hey, you should see the other guy!”
.
Tape still clings tightly to the stitches and I try to resist picking at it. I don’t want to unravel myself prematurely. The incision is five and a half inches long. The scar will ride fairly straight across the top of my right breast. It has a slight curve that makes it look like an upside down smiley. The scar in my arm pit where they removed the lymph nodes is two and a half inches long. There is another smaller one and a half inch scar high over my left breast where my port used to be. That port made it easier to gain direct access to a vein when I had my chemo thirteen years ago. No one has mentioned a port yet for this round of chemo.
I worry that it will be harder to catch a vein now since they can’t use my right arm. That’s a new rule for me now. No pokes, sticks or blood pressure for the right arm. There is a risk of lymphedema and even garden scratches are to be avoided. I saw a pamphlet. Lymphedema is definitely something to avoid. There are pictures of women with arms or legs that look like elephantitis. Once you get it, it‘s very hard to get rid of it. It’s not fluid that you can just drain away. It’s more like stubborn webbing that stays put once it takes up residence. Something else to worry about…
There is another scar that starts at the top of my right shoulder and extends seven inches or so down about half way to my elbow. That’s from my shoulder replacement surgery. When I look in the mirror, I think I look like I lost a sword fight. Maybe since I am still standing, I should start thinking that I won a sword fight. There’s an image. Conquering Amazon with sword raised high (in my left hand of course). “Hey, you should see the other guy!”
.
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