Somehow in the last two weeks, I have lost my center. I went into the surgery centered, whole and feeling able to handle whatever happened. I don't feel that way anymore. I'm anxious, flitting from one thing to the next and not coping all that well. I am certainly not prepared to start chemotherapy. So how do I get back to being centered before chemo starts? How do I start off the New Year in a positive and optimistic frame of mind? These are life issues not cancer issues. But I have decided that pain killers certainly impact the thought process and I think they are derailing me.
I feel like there is no road map for how to recover. The nurses keep saying it is a very individual process. Some folks take pain killers for one day and not again. Some are in pain for a month. I certainly thought I would be the one day kind of pain killer person. It might be I am in pain for a month.
My meditations seem not to be able to help me relax and move away from the pain. Every morning, before every afternoon nap and every night I spend 10 minutes chanting to myself:
May I be filled with loving kindness
May I be well
May I be peaceful and at ease
May I be happy. **
More often than ever before, I find myself swept away in destructive thoughts. I "should" myself. I "should" be feeling better. I "should" have less pain. I "shouldn't" be nauseous for no reason.
I called my friend, C. As a breast cancer survivor, with the same surgical and oncology team, she holds my hand (figuratively) when I am scared and don't know if what I am going through is typical. Should I be working harder at getting mobility back? Am I a wimp for needing pain killers still? C had the best suggestion. Try a balance pose to get back my centered self. I must have been leaning that direction, because even before I talked to her I started yoga. But I didn't think to do balance poses. I started those this morning with my morning exercises.
The simplest balance pose is Tree. You stand up straight. Then you take one leg and put it on your other leg, anywhere from on your calf to your upper thigh (just not on your knee). Then you put your hands into prayer position in front of your chest. Keep your head up, eyes open and focused on one point in front of you to help you balance. Breathe. I try to take 5 relaxed breaths. After a while you do the other leg. Repeat on both sides. I can tell when I am getting back to center because I am not wobbling all over. After the first round, I found a little bit of my center and relaxed. There is a way through the pain. I will find it.
I know that I can be happy no matter how tough the circumstances. I want to get off the pain killers so I can get back to being centered and whole. So today I will do my yoga and special stretches twice. I will be centered enough and focus on other parts of my life besides pain.
Ken is taking me out for a very early New Year's Eve dinner. I celebrate going outside and breathing air. I celebrate a new year is beginning. I am grateful for my caring family and very supportive friends. I pray that we all have a healthy and prosperous 2010. A new decade. Happy New Year.
**I am sorry in my last post of this mantra I omitted to mention that this is from Jack Kornfield's book "A Path with Heart: A Guide Through the Perils and Promises of Spiritual Life"
Thursday, December 31, 2009
Sunday, December 27, 2009
Post- Surgical Routine (or what am I doing now?)
I must be better because I am bored.
My days have settled into a post-surgical routine. I get up, take my pain pill and dive for coffee, as always. The coffee I mean not the pain pill. Though, when I wake up it has usually been 8 or 9 hours since my last pain pill so I dive for the pain pill too.
My breakfast is very different than my pre-surgical breakfast. I used to eat Greek yogurt (for the protein), 1/2 banana, and twigs (high fiber cereal). Now I have a couple of crackers or Ken's banana bread and that helps with the chronic nausea that I have. This morning I read all about the great hairstyles for 2010, with chemo I will be missing those. I ordered some chemo scarves off the internet.
Then I sit, read the paper, read a few emails, check for comments on my blog, and call my mother. Then I read some more. By now it is noon, as soon as I start wandering around the apartment I figure that I am probably hungry. So I heat up or nibble on some of the food that people generously sent. People send lots of food when you are sick. Thank goodness for the ravenous 16 year old. The half of sandwich or couple ounces of meat and left over vegetables or fruit I eat would leave enough food for the next century.
Every day I try to take a nap right in the afternoon. Late afternoon, I shower, which is my big excitement for the day. I can now wash my own hair. Then I read some more. We eat dinner. After dinner, we watch movies or DVD's from friends. Then more reading and off to bed.
Christmas Eve I didn't get a nap in and I sat holding my face in my hands at the dinner table at 7:30 p.m. I napped until 9:30 and then I anxiously sat in my chair waiting for Santa. I finally went to sleep after 1 a.m. and somehow still missed him.
Sometime throughout the day, now that I am feeling better, a couple of times I day, I try and stretch my shoulders and arms. I do gentle lifts from a list 8 pages long from the hospital. I was supposed to start these day two. Day two I couldn't even stand up. Let alone stand up, do these 6 stretches five to seven times each (repeat for both sides), lay down and do these 3 stretches five to seven times each, then sit and do these 3 stretches five to seven times each. Even now I do 2 or 3 a few times each day. I can feel how much time and effort full mobility in my shoulders and arms is going to take. I know I need to start working on it more. I long for the return of my natural flexibility.
This is the small work of surgery recovery. Time for my nap.
My days have settled into a post-surgical routine. I get up, take my pain pill and dive for coffee, as always. The coffee I mean not the pain pill. Though, when I wake up it has usually been 8 or 9 hours since my last pain pill so I dive for the pain pill too.
My breakfast is very different than my pre-surgical breakfast. I used to eat Greek yogurt (for the protein), 1/2 banana, and twigs (high fiber cereal). Now I have a couple of crackers or Ken's banana bread and that helps with the chronic nausea that I have. This morning I read all about the great hairstyles for 2010, with chemo I will be missing those. I ordered some chemo scarves off the internet.
Then I sit, read the paper, read a few emails, check for comments on my blog, and call my mother. Then I read some more. By now it is noon, as soon as I start wandering around the apartment I figure that I am probably hungry. So I heat up or nibble on some of the food that people generously sent. People send lots of food when you are sick. Thank goodness for the ravenous 16 year old. The half of sandwich or couple ounces of meat and left over vegetables or fruit I eat would leave enough food for the next century.
Every day I try to take a nap right in the afternoon. Late afternoon, I shower, which is my big excitement for the day. I can now wash my own hair. Then I read some more. We eat dinner. After dinner, we watch movies or DVD's from friends. Then more reading and off to bed.
Christmas Eve I didn't get a nap in and I sat holding my face in my hands at the dinner table at 7:30 p.m. I napped until 9:30 and then I anxiously sat in my chair waiting for Santa. I finally went to sleep after 1 a.m. and somehow still missed him.
Sometime throughout the day, now that I am feeling better, a couple of times I day, I try and stretch my shoulders and arms. I do gentle lifts from a list 8 pages long from the hospital. I was supposed to start these day two. Day two I couldn't even stand up. Let alone stand up, do these 6 stretches five to seven times each (repeat for both sides), lay down and do these 3 stretches five to seven times each, then sit and do these 3 stretches five to seven times each. Even now I do 2 or 3 a few times each day. I can feel how much time and effort full mobility in my shoulders and arms is going to take. I know I need to start working on it more. I long for the return of my natural flexibility.
This is the small work of surgery recovery. Time for my nap.
Tuesday, December 22, 2009
Unbelievable
I listened to a speaker once and his name was Boaz. Boaz taught many things but his one phrase that keeps repeating through my head today is "unbelievable". Boaz taught us you should answer when someone asks how you are, "unbelievable." How was my day? "Well, unbelievable."
It started with my doctor saying, "in the 1000's of cases I have done I have never seen this" and "your case is very interesting". I have decided you never want to be interesting to your doctor.
One, they found cancer in my left breast. Not a lot; 3 mm of cancer in the skin under my left nipple. Some of you, who have been paying attention will know that they were concerned that I might have cancer under the nipple in my right breast (where they wanted to do another biopsy). I did not have cancer under that nipple. I had invasive ductal cancer and lobular cancer in situ under my left nipple.
It was not found on the MRI, not found on the mammography, and not found on ultrasound. Go figure. Very unusual to have prophylactic surgery on an innocent breast and find cancer. The good news is that I have had it all removed by having the bilateral mastectomy and saved myself from a potential future bout with breast cancer in my other breast. It is a joy to think I will NEVER look back and think, gee should I have gone with a lumpectomy? I made the right decision to have the bilateral mastectomy. Unbelievable.
The second thing we found today is that upon further review (meaning freezing, slicing, dicing and staining) one of my lymph nodes of the 5 that they removed from my right side was cancerous. Because it was very small it is called a micrometastatic node. Any node involvement changes the game in cancer (even if it is .5 mm.) So although Ken was told after surgery that I was lymph node negative I am not. I am lymph node positive. Unbelievable.
I have Stage 2 Breast Cancer and will need Chemotherapy. If they need to remove more lymph nodes that will happen first, then I will have chemotherapy at least 4 times. Once every three weeks for 12 weeks. We had hoped that today I would get news that I might not need chemotherapy but that there was one more test they wanted to run. But we got different news. My fight will take longer.
Unbelievable. See how well that fits?
For now, I am going to rest up, enjoy the glorious freedom since they took my drains out today. I'll spend the holidays here at home and renew my spirit. I'll let you know what is happening as soon as the reality steps in and things become more believable.
It started with my doctor saying, "in the 1000's of cases I have done I have never seen this" and "your case is very interesting". I have decided you never want to be interesting to your doctor.
One, they found cancer in my left breast. Not a lot; 3 mm of cancer in the skin under my left nipple. Some of you, who have been paying attention will know that they were concerned that I might have cancer under the nipple in my right breast (where they wanted to do another biopsy). I did not have cancer under that nipple. I had invasive ductal cancer and lobular cancer in situ under my left nipple.
It was not found on the MRI, not found on the mammography, and not found on ultrasound. Go figure. Very unusual to have prophylactic surgery on an innocent breast and find cancer. The good news is that I have had it all removed by having the bilateral mastectomy and saved myself from a potential future bout with breast cancer in my other breast. It is a joy to think I will NEVER look back and think, gee should I have gone with a lumpectomy? I made the right decision to have the bilateral mastectomy. Unbelievable.
The second thing we found today is that upon further review (meaning freezing, slicing, dicing and staining) one of my lymph nodes of the 5 that they removed from my right side was cancerous. Because it was very small it is called a micrometastatic node. Any node involvement changes the game in cancer (even if it is .5 mm.) So although Ken was told after surgery that I was lymph node negative I am not. I am lymph node positive. Unbelievable.
I have Stage 2 Breast Cancer and will need Chemotherapy. If they need to remove more lymph nodes that will happen first, then I will have chemotherapy at least 4 times. Once every three weeks for 12 weeks. We had hoped that today I would get news that I might not need chemotherapy but that there was one more test they wanted to run. But we got different news. My fight will take longer.
Unbelievable. See how well that fits?
For now, I am going to rest up, enjoy the glorious freedom since they took my drains out today. I'll spend the holidays here at home and renew my spirit. I'll let you know what is happening as soon as the reality steps in and things become more believable.
Monday, December 21, 2009
Tuesday is the next step ...
I really want to ask both the surgeons which is the one responsible for making the front of my body look like it was crushed by a panini press. Heck, I even practically have what could pass for griddle marks around the edges. I suggested this to the surgeon when he called and checked on me over the phone and he said, "Now, there's an image". He then when on to say, "well, it's really early." I'm just not sure how you can get from having this look to anything that resembles normal. But like he said, it's early. And it's the Plastic Surgeons job to do, so Dr B skates.
Not that everyone thinks that I look that bad, I have showed off my chest and scars to three good friends (all right very good friends). One of whom I even had touch the edges to feel the massive heat my body is generating through the healing process. All of them think it looks great. But they might be humoring me. And I might be on too much Vicodin to know the difference. I really think they are all impressed that there aren't massive stitches and scars.
Tuesday I get my chance to ask questions. I also would like to run into the Anesthesiology fellow. For her I would just like to do a little show and tell. She was very quick to tell me that she was great with a needle and she wouldn't bruise me. I'd like to show her the back of my left hand which is still totally purple and the lumpy hematoma in my arm from where she put the IV.
I hope I have the stamina to last through four doctors appointments. The first is with the Surgical Oncologists at 8:20. Then I see the first General Oncologist at 10 a.m. Then a follow up with the Plastic Surgeon at 11:45 a.m. Then another General Oncologist at 2 p.m.
The Surgical Oncologist will give me the pathology results from the surgery. I am not sure what that really means but we will find out. The General Oncologists will have built a plan around the rest of my cancer treatment from those pathology reports and they will tell us what they suggest I do next. They will probably run some additional tests. So I don't think we will have all the answers on Tuesday but it will be a start.
During the Plastic Surgeon follow-up he will remove (or his nurse will) as many drains as are ready. At least two out of three should be ready. I hope that three will, but they keep telling me you can't rush these things. If they take out the drains too soon, then they might have to stick needles in to aspirate the area if it swells. That wouldn't be good.
My mission Tuesday is to pick which General Oncologist I like better. Surgeons come and go quickly in your life (you hope) but the General Oncologist will manage my cancer care for the next five years. I have to decide who I like. Luckily Ken will be with me to help listen.
Yesterday (Sunday) and today, I have stayed very quiet. I have been resting as much as I can, reading, watching movies, not even talking much. I have been both healing and saving up the energy for the next phase of this process. I'll let you know how it goes.
Not that everyone thinks that I look that bad, I have showed off my chest and scars to three good friends (all right very good friends). One of whom I even had touch the edges to feel the massive heat my body is generating through the healing process. All of them think it looks great. But they might be humoring me. And I might be on too much Vicodin to know the difference. I really think they are all impressed that there aren't massive stitches and scars.
Tuesday I get my chance to ask questions. I also would like to run into the Anesthesiology fellow. For her I would just like to do a little show and tell. She was very quick to tell me that she was great with a needle and she wouldn't bruise me. I'd like to show her the back of my left hand which is still totally purple and the lumpy hematoma in my arm from where she put the IV.
I hope I have the stamina to last through four doctors appointments. The first is with the Surgical Oncologists at 8:20. Then I see the first General Oncologist at 10 a.m. Then a follow up with the Plastic Surgeon at 11:45 a.m. Then another General Oncologist at 2 p.m.
The Surgical Oncologist will give me the pathology results from the surgery. I am not sure what that really means but we will find out. The General Oncologists will have built a plan around the rest of my cancer treatment from those pathology reports and they will tell us what they suggest I do next. They will probably run some additional tests. So I don't think we will have all the answers on Tuesday but it will be a start.
During the Plastic Surgeon follow-up he will remove (or his nurse will) as many drains as are ready. At least two out of three should be ready. I hope that three will, but they keep telling me you can't rush these things. If they take out the drains too soon, then they might have to stick needles in to aspirate the area if it swells. That wouldn't be good.
My mission Tuesday is to pick which General Oncologist I like better. Surgeons come and go quickly in your life (you hope) but the General Oncologist will manage my cancer care for the next five years. I have to decide who I like. Luckily Ken will be with me to help listen.
Yesterday (Sunday) and today, I have stayed very quiet. I have been resting as much as I can, reading, watching movies, not even talking much. I have been both healing and saving up the energy for the next phase of this process. I'll let you know how it goes.
Saturday, December 19, 2009
Sleeping and yoga dreams
Mornings are tough. Sleeping is very difficult. I have plastic drains coming out of three places in my body (you really don't want to know a lot about those). But because of these I can only sleep perfectly flat on my back. I can't turn or move. So I have yet to get up after being in bed overnight and feel rested. Mostly I get up and I ache. I know sleep is very important to the recuperative process so I take the Vicodin and go to bed. But I feel best after my short naps during the day.
During the naps I don't seem to dream. At night, I feel like I just move from one weird dream to the next. So I woke up this morning from a yoga dream. In my dream, I was doing yoga in this beautiful white, well lit room. I was stretching and I was doing yoga like gymnastics. Walking along a line on the floor. I even did a cartwheel. Certainly not a yoga move. Then I was setting up to do a headstand.
Now, I don't know if any of you have done one lately, but this is how you do a headstand. You make the top two parts of a triangle with your hands, you gently rest the back of your head in the nest of your two hands. Then you lift your body onto your toes and walk them toward your head and hands. This slowly lift your hips over your body in a vertical position. Then you use your core stomach muscles to pull your legs over head one at a time and you hold it for 3-4 minutes. But you have to press ALOT into your arms and use them as leverage to push yourselves up. And it helps to have your arms closer to your ears and head rather than further away. But when you do it. It is blissful. I did one the night before I went into surgery, along with a back bend just to remind myself that I am strong.
I am NOT an expert at headstands. I still have to think about every body part. I did one successfully without help for the first time in the last month.
So, I am not sure why I was dreaming of doing yoga or headstands. But what I can tell you is that I felt like I had done the yoga physically when I woke up. Everything in my shoulders and arms hurts a bit more this morning. But it also gave me a sense that I can.
The days go up and down like that. I feel like I can and then I need a nap.
During the naps I don't seem to dream. At night, I feel like I just move from one weird dream to the next. So I woke up this morning from a yoga dream. In my dream, I was doing yoga in this beautiful white, well lit room. I was stretching and I was doing yoga like gymnastics. Walking along a line on the floor. I even did a cartwheel. Certainly not a yoga move. Then I was setting up to do a headstand.
Now, I don't know if any of you have done one lately, but this is how you do a headstand. You make the top two parts of a triangle with your hands, you gently rest the back of your head in the nest of your two hands. Then you lift your body onto your toes and walk them toward your head and hands. This slowly lift your hips over your body in a vertical position. Then you use your core stomach muscles to pull your legs over head one at a time and you hold it for 3-4 minutes. But you have to press ALOT into your arms and use them as leverage to push yourselves up. And it helps to have your arms closer to your ears and head rather than further away. But when you do it. It is blissful. I did one the night before I went into surgery, along with a back bend just to remind myself that I am strong.
I am NOT an expert at headstands. I still have to think about every body part. I did one successfully without help for the first time in the last month.
So, I am not sure why I was dreaming of doing yoga or headstands. But what I can tell you is that I felt like I had done the yoga physically when I woke up. Everything in my shoulders and arms hurts a bit more this morning. But it also gave me a sense that I can.
The days go up and down like that. I feel like I can and then I need a nap.
Thursday, December 17, 2009
Pain Management
Before the surgery, I had told all my doctors I am allergic to Codeine, Vicodin and morphine. They told me I am not allergic as my throat doesn't shut down. I only get hives and super sensitive skin (that can feel like it is crawling). I never knew but now I know, this is only a side effect and not an allergy. Oh joy. So as I was leaving the hospital they have given a prescription for Vicodin and told me to take a Benedryl every time I take one to reduce the risk of hives.
Wednesday is the day that turned out not to work so well.
I have never felt anything like this internal pain. My insides were quivering and shaking. Some of that you could see on the surface. If you asked me what the pain was on a scale of 1 -10, I would say it was a 7. I am the most pain tolerant person I know. One day I had 3 dental crowns put in, that pain was only a 4. Some of the pain was internal and some was that guy that keeps standing on my chest who weighs 200 pounds. My left shoulder was also cramping up and in a full spasm.
I got up desperate Wednesday morning and called our dear friend, Lauren, who is a masseuse and has the most magic warm hands. She came over within hours and spent time just working gently on my shoulder and back. Her gift is her hands, she said. When she worked on me (I sat in a chair) she noticed that they had pen marks on my back. I just keep wondering, what did they do to me while I was out? Immediately, the cramping was gone and my back felt much better.
Finally, I called the doctor at 6 p.m. when I thought I might pass out from the internal pain. The fellow cheerfully informed me that they had only given me 1/2 the normal dose of Vicodin as they thought that might help me not get hives. She immediately suggested that I go take another Vicodin right away and then take 2 tabs every six hours for a couple of days.
I have never been one to believe in drugs. I am into yoga, organic foods, balanced diets and exercise. But let me tell, I now know what Vicodin bliss is. For the moment, I will ignore the weird side effects and the crazy feelings these drugs give and I will enjoy the reduction in pain.
Wednesday is the day that turned out not to work so well.
I have never felt anything like this internal pain. My insides were quivering and shaking. Some of that you could see on the surface. If you asked me what the pain was on a scale of 1 -10, I would say it was a 7. I am the most pain tolerant person I know. One day I had 3 dental crowns put in, that pain was only a 4. Some of the pain was internal and some was that guy that keeps standing on my chest who weighs 200 pounds. My left shoulder was also cramping up and in a full spasm.
I got up desperate Wednesday morning and called our dear friend, Lauren, who is a masseuse and has the most magic warm hands. She came over within hours and spent time just working gently on my shoulder and back. Her gift is her hands, she said. When she worked on me (I sat in a chair) she noticed that they had pen marks on my back. I just keep wondering, what did they do to me while I was out? Immediately, the cramping was gone and my back felt much better.
Finally, I called the doctor at 6 p.m. when I thought I might pass out from the internal pain. The fellow cheerfully informed me that they had only given me 1/2 the normal dose of Vicodin as they thought that might help me not get hives. She immediately suggested that I go take another Vicodin right away and then take 2 tabs every six hours for a couple of days.
I have never been one to believe in drugs. I am into yoga, organic foods, balanced diets and exercise. But let me tell, I now know what Vicodin bliss is. For the moment, I will ignore the weird side effects and the crazy feelings these drugs give and I will enjoy the reduction in pain.
Disclaimer
Ok, I am still awake and just re-read what I wrote. I am on pain killers, I tell you. So, if the last three blog entries make no sense, just wait a few days, I will straighten them out as soon as I get drug free!
Coming Home
I think my health insurance company paid the day nursing assistant on Tuesday so that I would insist on going home. While changing my gown, she pulled on one of the tubes. She bumped my bed. I just about jumped out the window. Then she told me that I needed to calm down.
But the real fact is that I didn't need medical care after the first 12 hours. I need to rest and recover which you can't really do at a hospital. I didn't want to spend another night with people poking me every hour.
In addition, I have a thing about IV's. I'm fine with having them if they are useful. But Tuesday a.m. they took it out but they left the needle part in. Just in case they said. Hospital policy, in case we have to administer medication quickly. I'll tell you after the fiasco with the IV earlier with my hand, if I had staying another night I would have ripped it out with my teeth.
It was hard to get to the car, to get into the apartment. I was walking very slowly. I could tell Ellen had to focus to walk with me. But the best part in the world is sliding into the clean sheets of your own bed. I was momentarily ecstatic. Later the back pain and the weight on my chest showed up.
During that first night, I had drug dreams and every time I woke up I started repeating the mantra I had used all day before surgery. It helped.
My mantra:
May I be filled with loving kindness
May I be well
May be peaceful and at ease
May I be happy
But the real fact is that I didn't need medical care after the first 12 hours. I need to rest and recover which you can't really do at a hospital. I didn't want to spend another night with people poking me every hour.
In addition, I have a thing about IV's. I'm fine with having them if they are useful. But Tuesday a.m. they took it out but they left the needle part in. Just in case they said. Hospital policy, in case we have to administer medication quickly. I'll tell you after the fiasco with the IV earlier with my hand, if I had staying another night I would have ripped it out with my teeth.
It was hard to get to the car, to get into the apartment. I was walking very slowly. I could tell Ellen had to focus to walk with me. But the best part in the world is sliding into the clean sheets of your own bed. I was momentarily ecstatic. Later the back pain and the weight on my chest showed up.
During that first night, I had drug dreams and every time I woke up I started repeating the mantra I had used all day before surgery. It helped.
My mantra:
May I be filled with loving kindness
May I be well
May be peaceful and at ease
May I be happy
Surgery Night
Hospitals are exhausting. it was 3:30 a.m. Remember now, I hadn't eaten or had anything by mouth for 23 hours and the nurse was insisting that I get up and use the bathroom. I looked at her and said, "I don't need to" and thought about throwing a temper tantrum. She said, nicely, that I still had to dangle my legs over the side of my bed. So then I thought, after I got to there, that I might as well, as long as I was up. She said that was what she thought I would do all along. Tricky, these night nurses. Actually both night nurses, Paulina and Maria were wonderful.
Ellen cheered me on, telling me I was strong and doing great. Thank God for Ellen. She fed me ice chips, and talked to me off and on all night. And she did it all looking great. Here I was a disaster and I am looking up at her from my bed and her hair looks just like she got ready and she been asleep on like a nylon sofa futon thing for hours.
I was awake every hour from about 11 p.m. to 6 a.m. then I was up for the day.
Ellen cheered me on, telling me I was strong and doing great. Thank God for Ellen. She fed me ice chips, and talked to me off and on all night. And she did it all looking great. Here I was a disaster and I am looking up at her from my bed and her hair looks just like she got ready and she been asleep on like a nylon sofa futon thing for hours.
I was awake every hour from about 11 p.m. to 6 a.m. then I was up for the day.
Surgery Day
The last thing I remember is being thirsty and the nurse anesthetist saying, this is going to feel like two glasses of wine. Well, I'm not sure what kind of wine she drinks but I remember nothing from that moment forward. It was certainly not like any two glasses of wine I have ever had.
I was in surgery a long time. Three hours for the cancer piece and two hours for the beginning of the reconstruction. I know it was hardest on everyone waiting.
The first thing the surgeon said to Ken and Ellen when he went to talk to them is that I told him a joke as soon as I woke up. They said he was pretty amazed. I think when I woke up they must have been talking about Santa Claus or Tiger Woods because right now that is the only joke I know. So I told it.
Then I remember the recovery room. Ken says the nurses were amused that I was trying to run things. I kept telling them they had to let Ken in to see me (no one is allowed to see you until you get to your room on the floor). I remember being concerned that Ken had to get home to Adam so I am sure they are right, I was trying to get him in. I remember moving over from the operating room bed onto the room bed. I remember having this fleeting thought that my legs were still strong. They let Ken, Chris and Ellen all into my room at the same time. I remember thinking the room was small and feeling like the walls were dark and were closing in on me. Then the feeling went away as I drifted in and out. It turns out the room was lovely. I was just too out of it to know.
I am thrilled that I wasn't sick or nauseous when I woke up. I had talked and talked to the anesthesiologist about how many drugs made me sick. So whatever they did to help manage that worked.
I do remember waking up to this feeling that there is a man who weighs 200 pounds standing on my chest. It still feels like that.
I was in surgery a long time. Three hours for the cancer piece and two hours for the beginning of the reconstruction. I know it was hardest on everyone waiting.
The first thing the surgeon said to Ken and Ellen when he went to talk to them is that I told him a joke as soon as I woke up. They said he was pretty amazed. I think when I woke up they must have been talking about Santa Claus or Tiger Woods because right now that is the only joke I know. So I told it.
Then I remember the recovery room. Ken says the nurses were amused that I was trying to run things. I kept telling them they had to let Ken in to see me (no one is allowed to see you until you get to your room on the floor). I remember being concerned that Ken had to get home to Adam so I am sure they are right, I was trying to get him in. I remember moving over from the operating room bed onto the room bed. I remember having this fleeting thought that my legs were still strong. They let Ken, Chris and Ellen all into my room at the same time. I remember thinking the room was small and feeling like the walls were dark and were closing in on me. Then the feeling went away as I drifted in and out. It turns out the room was lovely. I was just too out of it to know.
I am thrilled that I wasn't sick or nauseous when I woke up. I had talked and talked to the anesthesiologist about how many drugs made me sick. So whatever they did to help manage that worked.
I do remember waking up to this feeling that there is a man who weighs 200 pounds standing on my chest. It still feels like that.
Tuesday, December 15, 2009
Monday, December 14, 2009
Michele is out of surgery
Michele is resting in her room. Both surgeries went well. Her lymph nodes were negative, which is very good news.
Ken
Ken
Saturday, December 12, 2009
Prepping for Surgery
My surgery time has been changed, it is now 1:15 p.m. on Monday December 14th (moved later). The good news is they will let me get up and have breakfast before 5 a.m. on Monday. Those who know me, know that is fine. I will probably be up anyway. But nothing by mouth after 5 a.m. I am happy, I will get to have my morning coffee so I won't go into surgery with a caffeine withdrawal headache. How did I ever get addicted to caffeine anyway? But this is not the week to try to kick that habit and go through withdrawal.
The schedule has aligned. Monday, Adam is studying chemistry after school and then going to a friend's house to study some more and hopefully not eat them out of house and home. Ken will be with me until I am up in my room which may not be until 8 p.m. or so in the evening. Two close friends will be there that night, one to stay overnight in the hospital with me and one to check in on me.
I have finished what Christmas shopping I am going to do, I have written what cards I am going to send, I have decorated the Christmas tree with decorations. I have let life get smaller. Only the most important ornaments (most made by my grandmother with a few Adam child ones) are on the tree. The cards are for immediate family. The shopping just enough so the tree will have something beneath it that matters to Ken and Adam. Funny movies have arrived on loan from family and friends. When those run out, I have a great list for Netflix.
Work is done. The new sales "guy" (he's from New York, so I think that is ok) starts January 4, 2010. The Christmas party is planned, the gifts for the team bought, the NY Eve celebration organized for those who have to work. For the boards I serve on, I have begged volunteers to pick up my pieces for now.
I went and got a kick-butt hair cut Thursday afternoon. I am not going to sit around and stare at gray, out of control hair. This morning Ken and I went to the club and took a biking class. I felt out of shape and not very strong but I will do it again in the morning because I don't know when I will be able to again.
Tonight, Ken and I are making one of my special comfort meals: steaks (grass fed beef), baked potatoes (with cheese and sour cream of course), broccoli with slices of lemon. Most importantly, Ken is making his special desert; chocolate souffle cake. The best desert on the planet; chocolate cake with a warm gooey center.
Unless I have some brilliant epiphany that I need to share in these last 36 hours, I am signing off. I will talk to you on the other side of my surgery and let you know how it went and how I am. I have asked Ken to post a quick note Monday night to let you know I am out of surgery and all right.
Thank you all for the great movie comments and emails. I have a wonderful list that I will share after I put it together. Thank you for all your support.
Looking forward,
Michele
The schedule has aligned. Monday, Adam is studying chemistry after school and then going to a friend's house to study some more and hopefully not eat them out of house and home. Ken will be with me until I am up in my room which may not be until 8 p.m. or so in the evening. Two close friends will be there that night, one to stay overnight in the hospital with me and one to check in on me.
I have finished what Christmas shopping I am going to do, I have written what cards I am going to send, I have decorated the Christmas tree with decorations. I have let life get smaller. Only the most important ornaments (most made by my grandmother with a few Adam child ones) are on the tree. The cards are for immediate family. The shopping just enough so the tree will have something beneath it that matters to Ken and Adam. Funny movies have arrived on loan from family and friends. When those run out, I have a great list for Netflix.
Work is done. The new sales "guy" (he's from New York, so I think that is ok) starts January 4, 2010. The Christmas party is planned, the gifts for the team bought, the NY Eve celebration organized for those who have to work. For the boards I serve on, I have begged volunteers to pick up my pieces for now.
I went and got a kick-butt hair cut Thursday afternoon. I am not going to sit around and stare at gray, out of control hair. This morning Ken and I went to the club and took a biking class. I felt out of shape and not very strong but I will do it again in the morning because I don't know when I will be able to again.
Tonight, Ken and I are making one of my special comfort meals: steaks (grass fed beef), baked potatoes (with cheese and sour cream of course), broccoli with slices of lemon. Most importantly, Ken is making his special desert; chocolate souffle cake. The best desert on the planet; chocolate cake with a warm gooey center.
Unless I have some brilliant epiphany that I need to share in these last 36 hours, I am signing off. I will talk to you on the other side of my surgery and let you know how it went and how I am. I have asked Ken to post a quick note Monday night to let you know I am out of surgery and all right.
Thank you all for the great movie comments and emails. I have a wonderful list that I will share after I put it together. Thank you for all your support.
Looking forward,
Michele
Thursday, December 10, 2009
Waiting
It's 6 a.m. and I have been up since 4 a.m. Waiting is difficult. It is physical. This knot in the pit of your stomach. The tautness in the back of my neck. I try to meditate. I try to watch TV (you know there really isn't much on in the middle of the night!). I try to read and I spent part of the time surfing the internet reading yoga blogs. I read email. But my email is way down as I have cut myself off of a ton of work related emails over the past week.
I did laundry. Tonight I will decorate the Christmas tree and play Christmas carols. That will be better perhaps. The time is winding down and I am stepping off into the unknown.
Somehow I have to make this transition into myself. I spend so much of my time focusing outward, taking care of everything else. And right now there is just me to focus on and what I need to take care of is... me. This is a challenge.
I did laundry. Tonight I will decorate the Christmas tree and play Christmas carols. That will be better perhaps. The time is winding down and I am stepping off into the unknown.
Somehow I have to make this transition into myself. I spend so much of my time focusing outward, taking care of everything else. And right now there is just me to focus on and what I need to take care of is... me. This is a challenge.
Monday, December 7, 2009
Centered
Friday night we went out to our old neighborhood and had dinner with two families. Friends from when we all lived on the same block. They still live there and we moved back to the city, to a condo away from the suburbs, gardens and community. These were great neighbors. The kind of people that you would see outside and stop to chat with for an hour. People with who we have been biking, had Easter dinner, taught Sunday school, shared books.
There was something about that dinner. We sat around a table talking and joking about health care reform and global warming. We joked about current events and then we got to all the family stuff. How is your brother? What trips do folks have planned for the summer? I ate. I ate more than I have in a month. Delivered pizza and brownies never tasted so good. The night flew by. All of sudden four hours had passed.
We made room at the table for the four kids so we could all be together. It was warm and wonderful on a very cold night. I felt very centered sitting there around the crowded table. We had talked about going into town for the Christmas walk but we just never made it off the chairs.
In the city, you have to make your own community. Your community is not necessarily your neighbors or the people who live in your building. I had forgotten what it is like to be part of such a geographic based community and I realized how much I miss the friends from our suburban life. I have been more relaxed since that dinner. I am more ready to face the future. That is what friends do, help you face the future.
Thanks to them for that.
There was something about that dinner. We sat around a table talking and joking about health care reform and global warming. We joked about current events and then we got to all the family stuff. How is your brother? What trips do folks have planned for the summer? I ate. I ate more than I have in a month. Delivered pizza and brownies never tasted so good. The night flew by. All of sudden four hours had passed.
We made room at the table for the four kids so we could all be together. It was warm and wonderful on a very cold night. I felt very centered sitting there around the crowded table. We had talked about going into town for the Christmas walk but we just never made it off the chairs.
In the city, you have to make your own community. Your community is not necessarily your neighbors or the people who live in your building. I had forgotten what it is like to be part of such a geographic based community and I realized how much I miss the friends from our suburban life. I have been more relaxed since that dinner. I am more ready to face the future. That is what friends do, help you face the future.
Thanks to them for that.
Saturday, December 5, 2009
Funny Movie List
The countdown is 8 days. My surgery is Monday December 14th. For the last few days, I have been thinking of how I will handle the down time and recovery. And I need help, I need names of funny movies that I can watch while I am recuperating.
Let's make a few clarifying requests. I am not into slapstick like Benny Hill or Monty Python. Here is a list of movies that I think are comedy that I like:
Men in Black
Ghostbusters
The Princess Bride
Groundhog Day
You've Got Mail!
Mama Mia!
I probably have dated myself here. I am open to suggestions. Please comment and suggest something.
thanks in advance,
Let's make a few clarifying requests. I am not into slapstick like Benny Hill or Monty Python. Here is a list of movies that I think are comedy that I like:
Men in Black
Ghostbusters
The Princess Bride
Groundhog Day
You've Got Mail!
Mama Mia!
I probably have dated myself here. I am open to suggestions. Please comment and suggest something.
thanks in advance,
Friday, December 4, 2009
Exercise: "I don't speak Portuguese" yet.
I have tried to play the sympathy card with my trainer. You should be nice to me I said, I have cancer. He laughed and said, "this is tough love baby". And it is. I need to be as strong as I can to get through this process. Yes, mentally strong but I need to stay physically strong. I ran across an article in the Chicago Tribune on 11/23/09 about a research study on the huge risks of inactivity.
It talked about 20 year old Danish males who were relatively inactive but walked between 6000 and 10,000 steps a day. There is roughly 2000 steps per mile so they were averaging between 3-5 miles. The researchers restricted them to 1500 steps a day. In just two weeks their weight hadn't gone up but their abdominal fat had increased 7%. They also showed signs of increased risk of diabetes and heart disease. Their insulin average increased 60%!
When I was 20 I wasn't particularly healthy and I made a vow to myself that I would be healthier when I was 30 than when I was 20. When I was 30 I was thin but not particularly healthy and I nodded to myself and said I was busy. Then marriage, a baby and I was overweight, busy and not healthy. I am certainly not saying the marriage caused the weight gain (but come on, when I was single dinner was a sliced apple and some cheese). When I was 40 I pretty much said to myself, who are you kidding? You said you would get healthier as you got older. You said you would take better care of yourself and you're not. I wanted to set a better example for my son. So I stripped away the excuses and started walking 10,000 steps a day. Then I added yoga. Then I added the elliptical. Then Ken and I started biking together and I got addicted. Then I added weight training so I would be stronger on the bike and healthier as I aged. I can see 50 from here. My brother was here this week and we did a couple yoga classes together, a real joy. He asked, "are you in the best shape of your life?" I felt a sense of satisfaction as I answered "pretty much." I was also biking 100 miles a week 6 weeks ago was so I was probably in better shape then. But it sure feels good.
All of this is a long way to get to admitting that I am scared about how hard it will be to get back into shape after the surgeries. How much flexibility, strength and training will I lose and how quickly? Look at the 20 year old Danish men, I mean my goodness, two weeks and it's all downhill. The study proves what we know. Lack of exercise hurts you. And I am a lot older than 20 something. I think most of us take our good health for granted. I certainly did.
This is how older people get old. Something happens, they get injured or sick and it takes longer and longer to recover. Or they can't recover to where they were before. That all seems pretty scary to me. I don't have a guide for how to recover from surgery. What to do and how. I am concerned about how quickly I will be able to or feel like moving again.
My trainer, Jean, shared something a few weeks ago. For the first time since we have been training together I said, "I can't." He smiled and laughed. He said, " I don't speak Portuguese." I said, "I beg your pardon?" He repeated, "I don't speak Portuguese." I must have looked mystified. He said, "haven't I ever told you that before?" "Nope." "Well you probably have never said "I can't before." He said, "I just don't understand those words. As far as I am concerned that must be Portuguese and I don't speak it. Let's go. Get it done." I laughed and we moved on.
So we will see if I after surgery if I have to learn to speak Portuguese.
The Chicago Tribune article is here:
http://www.chicagotribune.com/health/chi-tc-health-action-move-1118nov22,0,1946747.story
The actual study results link: http://jama.ama-assn.org/cgi/content/full/299/11/1261-a
It talked about 20 year old Danish males who were relatively inactive but walked between 6000 and 10,000 steps a day. There is roughly 2000 steps per mile so they were averaging between 3-5 miles. The researchers restricted them to 1500 steps a day. In just two weeks their weight hadn't gone up but their abdominal fat had increased 7%. They also showed signs of increased risk of diabetes and heart disease. Their insulin average increased 60%!
When I was 20 I wasn't particularly healthy and I made a vow to myself that I would be healthier when I was 30 than when I was 20. When I was 30 I was thin but not particularly healthy and I nodded to myself and said I was busy. Then marriage, a baby and I was overweight, busy and not healthy. I am certainly not saying the marriage caused the weight gain (but come on, when I was single dinner was a sliced apple and some cheese). When I was 40 I pretty much said to myself, who are you kidding? You said you would get healthier as you got older. You said you would take better care of yourself and you're not. I wanted to set a better example for my son. So I stripped away the excuses and started walking 10,000 steps a day. Then I added yoga. Then I added the elliptical. Then Ken and I started biking together and I got addicted. Then I added weight training so I would be stronger on the bike and healthier as I aged. I can see 50 from here. My brother was here this week and we did a couple yoga classes together, a real joy. He asked, "are you in the best shape of your life?" I felt a sense of satisfaction as I answered "pretty much." I was also biking 100 miles a week 6 weeks ago was so I was probably in better shape then. But it sure feels good.
All of this is a long way to get to admitting that I am scared about how hard it will be to get back into shape after the surgeries. How much flexibility, strength and training will I lose and how quickly? Look at the 20 year old Danish men, I mean my goodness, two weeks and it's all downhill. The study proves what we know. Lack of exercise hurts you. And I am a lot older than 20 something. I think most of us take our good health for granted. I certainly did.
This is how older people get old. Something happens, they get injured or sick and it takes longer and longer to recover. Or they can't recover to where they were before. That all seems pretty scary to me. I don't have a guide for how to recover from surgery. What to do and how. I am concerned about how quickly I will be able to or feel like moving again.
My trainer, Jean, shared something a few weeks ago. For the first time since we have been training together I said, "I can't." He smiled and laughed. He said, " I don't speak Portuguese." I said, "I beg your pardon?" He repeated, "I don't speak Portuguese." I must have looked mystified. He said, "haven't I ever told you that before?" "Nope." "Well you probably have never said "I can't before." He said, "I just don't understand those words. As far as I am concerned that must be Portuguese and I don't speak it. Let's go. Get it done." I laughed and we moved on.
So we will see if I after surgery if I have to learn to speak Portuguese.
The Chicago Tribune article is here:
http://www.chicagotribune.com/health/chi-tc-health-action-move-1118nov22,0,1946747.story
The actual study results link: http://jama.ama-assn.org/cgi/content/full/299/11/1261-a
Wednesday, December 2, 2009
Letting Others In
I hired my own replacement.
I have been training him for two days. It took 3 hours to explain something that I do in 20 minutes. I have the courage to let someone else do it. I am not nervous about him doing it. I am not scared. He is very experienced and he has a good sense of humor. Both are required traits. But it sure feels weird.
Letting others in and accepting their care is a struggle and something that scares me more than hiring someone to replace me. So many friends have asked how they can help and I am speechless. Of course right now, I don't need really need any physical help. But even if I do, I don't know that I will know how to ask. I have had wonderful emotional support from friends and even that is awkward. Do other people feel like uncomfortable talking about themselves and spending so much time on this? Some people seem so gracious about letting others into their lives. I feel like I am 13 all over again. Over the past few weeks many friends have sent cards, emailed and called. Or they have talked to my family who have passed on their messages to me. I am very appreciative and filled with warmth at the well wishes, but when it comes to talking I am uncomfortable. I am not one to put myself out there and draw attention to myself. I don't think most of us are. There have been some moments when I feel like screaming, "would everyone please just leave me alone!" This is my brain pretending that I don't have cancer and I am not scheduled for surgery less than two weeks from now. I will act like this isn't happening and it won't be, I think.
A friend made a comment a few weeks ago when I was talking about being overwhelmed by the attention "yes, it's really terrible to have so many people care about you." (She really was being sarcastic.) But that comment has been ringing in my head for the last few weeks. It is hard to let other people in this close. I think we all build up our lives and work to do what we think matters and I think for different people that is very different every day. I let my husband and son care for me daily. I care for them too. That is how family works (at least I am fortunate enough that mine does). Being exposed to outsiders is scary. I think it is easy for people to think they would be comfortable with the expressions and attention and it is hard when it really happens.
I can just see you thinking, yeah, she says she is uncomfortable but here she is writing it all down. I mean, I write this blog right? So I want people to know. But I write this because it is easier for me to write it than talk about it. When my mom was here last week, I looked straight at her (I even surprised myself) and said, "I don't want to talk about it." But if I write it down, I know (or I have conned myself) that I am dealing with it. It forces me too. I am not keeping it all locked up inside.
So I will practice going forward and accepting the warmth and affection from the people who care about me. I will ask for help if I need it and I will tamp down those awkward 13 year old girl moments and not scream, "just leave me alone."
I have been training him for two days. It took 3 hours to explain something that I do in 20 minutes. I have the courage to let someone else do it. I am not nervous about him doing it. I am not scared. He is very experienced and he has a good sense of humor. Both are required traits. But it sure feels weird.
Letting others in and accepting their care is a struggle and something that scares me more than hiring someone to replace me. So many friends have asked how they can help and I am speechless. Of course right now, I don't need really need any physical help. But even if I do, I don't know that I will know how to ask. I have had wonderful emotional support from friends and even that is awkward. Do other people feel like uncomfortable talking about themselves and spending so much time on this? Some people seem so gracious about letting others into their lives. I feel like I am 13 all over again. Over the past few weeks many friends have sent cards, emailed and called. Or they have talked to my family who have passed on their messages to me. I am very appreciative and filled with warmth at the well wishes, but when it comes to talking I am uncomfortable. I am not one to put myself out there and draw attention to myself. I don't think most of us are. There have been some moments when I feel like screaming, "would everyone please just leave me alone!" This is my brain pretending that I don't have cancer and I am not scheduled for surgery less than two weeks from now. I will act like this isn't happening and it won't be, I think.
A friend made a comment a few weeks ago when I was talking about being overwhelmed by the attention "yes, it's really terrible to have so many people care about you." (She really was being sarcastic.) But that comment has been ringing in my head for the last few weeks. It is hard to let other people in this close. I think we all build up our lives and work to do what we think matters and I think for different people that is very different every day. I let my husband and son care for me daily. I care for them too. That is how family works (at least I am fortunate enough that mine does). Being exposed to outsiders is scary. I think it is easy for people to think they would be comfortable with the expressions and attention and it is hard when it really happens.
I can just see you thinking, yeah, she says she is uncomfortable but here she is writing it all down. I mean, I write this blog right? So I want people to know. But I write this because it is easier for me to write it than talk about it. When my mom was here last week, I looked straight at her (I even surprised myself) and said, "I don't want to talk about it." But if I write it down, I know (or I have conned myself) that I am dealing with it. It forces me too. I am not keeping it all locked up inside.
So I will practice going forward and accepting the warmth and affection from the people who care about me. I will ask for help if I need it and I will tamp down those awkward 13 year old girl moments and not scream, "just leave me alone."
Monday, November 30, 2009
How people Talk...
In crisis people forget how to talk. Or perhaps more accurately, they get nervous and they forget how to talk with you and not at you. I think they are afraid if they stop talking the person having the crisis will say something scary.
After this is done, I might start a class on how to talk to people who are in crisis. Some people have magical people skills and won't need to attend. Some people might want to attend multiple times. I wonder if those people who don't know how to talk to others in crisis have been so blessed in their lives that they have never had a major loss or trauma.
It has struck me over the last three weeks what works and what doesn't for me. What doesn't work is people who try to be reassuring and end up crossing some invisible line into "shouldland". At least that is what I call it. Shouldland is when people start saying "you should" or "you have to" or "you must" or you "really really have to" try this or do that. For some reason when people talk to me with those words my mind just throws up a brick wall. Even if it is a great idea. It adds a layer of physical stress to be pushed into shouldland. I have decided that no one likes being told what to do. It makes my shoulders crawl up to my ears and the muscles up my spine tighten. It has made me aware of how I talk to my 16 year old!
I am open and willing to learn from most everyone about how to handle cancer as I know nothing. But what I learn seems to depend very much on how I am approached. When people say, "Have you seen? Have you read? You might want to look into ..." All of those work fine. I listen. I wonder. I am open to the world of possible. Even when the possibility is wheatgrass and how it cures cancer.
It doesn't necessarily break down into categories the way you would think. I have friends who are yogis and vegans who are living in shouldland and friends who are Type A driven individuals who run big companies who have been very supportive about what I might look into. And vice versa.
And I know that the people who are living in shouldland are trying to contribute and be helpful. Everyone wants to have some measure of control (there is that word again). Control I think is at the heart of it. It is very hard for people to see someone they care about be in trouble and not be able to control anything. I have to admit that I have little control over what is happening right now and I have to come to terms and accept that. I don't even have control of the people who live in shouldland and I should accept that.
The magical people-skill folks have said these things, "let me take a day or two off work and come sit with you after the surgery." "Let me bring over a movie and we will watch it together." Okay so these were all comments from my best friend. But she gets it. She knows what to say. She hasn't once said, "you should". She and many others have asked, "Do you have what you need? Do you need help? Another friend called to make sure we had plans for Thanksgiving and had someone to spend time with, and then he invited me to lunch. The list is long for those people saying all the right things. I am blessed. But I still might want to teach that class.
After this is done, I might start a class on how to talk to people who are in crisis. Some people have magical people skills and won't need to attend. Some people might want to attend multiple times. I wonder if those people who don't know how to talk to others in crisis have been so blessed in their lives that they have never had a major loss or trauma.
It has struck me over the last three weeks what works and what doesn't for me. What doesn't work is people who try to be reassuring and end up crossing some invisible line into "shouldland". At least that is what I call it. Shouldland is when people start saying "you should" or "you have to" or "you must" or you "really really have to" try this or do that. For some reason when people talk to me with those words my mind just throws up a brick wall. Even if it is a great idea. It adds a layer of physical stress to be pushed into shouldland. I have decided that no one likes being told what to do. It makes my shoulders crawl up to my ears and the muscles up my spine tighten. It has made me aware of how I talk to my 16 year old!
I am open and willing to learn from most everyone about how to handle cancer as I know nothing. But what I learn seems to depend very much on how I am approached. When people say, "Have you seen? Have you read? You might want to look into ..." All of those work fine. I listen. I wonder. I am open to the world of possible. Even when the possibility is wheatgrass and how it cures cancer.
It doesn't necessarily break down into categories the way you would think. I have friends who are yogis and vegans who are living in shouldland and friends who are Type A driven individuals who run big companies who have been very supportive about what I might look into. And vice versa.
And I know that the people who are living in shouldland are trying to contribute and be helpful. Everyone wants to have some measure of control (there is that word again). Control I think is at the heart of it. It is very hard for people to see someone they care about be in trouble and not be able to control anything. I have to admit that I have little control over what is happening right now and I have to come to terms and accept that. I don't even have control of the people who live in shouldland and I should accept that.
The magical people-skill folks have said these things, "let me take a day or two off work and come sit with you after the surgery." "Let me bring over a movie and we will watch it together." Okay so these were all comments from my best friend. But she gets it. She knows what to say. She hasn't once said, "you should". She and many others have asked, "Do you have what you need? Do you need help? Another friend called to make sure we had plans for Thanksgiving and had someone to spend time with, and then he invited me to lunch. The list is long for those people saying all the right things. I am blessed. But I still might want to teach that class.
Sunday, November 29, 2009
Darkness
My mother in law gave me a book for Thanksgiving. Well, probably not for Thanksgiving, just at Thanksgiving. It is called The Human Side of Cancer, Living with Hope, Coping with Uncertainty. I sat down to start reading it this morning as the sun came up. I didn't make it very far before I stopped and started thinking. This is a quote from the introduction page of the book The Human Side of Cancer,
Dr. Holland, I have these three gremlins in my head. One of them is on one side saying, "Jack, you're going to lick this--don't worry." Another is on the other side saying, "Jack, you dope, you know you aren't going to make it." And in the middle is this third little guy who has to make sense of both of them and help me to keep going on with my life day after day. Sometimes, they get so loud I can't think, but most of the time I keep them locked up, and when I'm busy they don't bother me.
When I was 6 or 7 I thought there were monsters under the bed and in the back corners of my closet. I perfected this running jump practically from my doorway all the way into my bed because I was sure if I didn't the monsters could grab my ankles and drag me under. I thought I would never be seen or heard from again. My monsters are back (or gremlins as Jack calls them). My monsters are these thoughts that creep into my mind and body creating anxiety. I get lost in the tug of war of thoughts and I end up somewhere far away. Ken can tell, he tries hard to pull me back, reaching out and squeezing my hand or wrapping me in a hug.
In the daytime, I can keep busy; dealing with hospital and doctor plans, making pies and plans for Thanksgiving, getting work ready for me to be gone for a while, dealing with meal planning while I am down. While worrying about food (one of my favorite hobbies) my mother in law said this weekend, "They will manage to eat. Don't worry." That was one of the moments it clicked for me. Worrying about that keeps my mind quiet. It stops the racing "what if" thoughts. It keeps those monsters under the bed.
Dark is the worst. And the worst of the worst is being in the Dark with nothing to do. I sat in a car for three hours in the dark this weekend. I was scared. I worried that even if they get all the cancer during my surgery that I will still worry that the cancer is there. I worried that I will need chemotherapy. I worry about the side effects of the Tamoxifen. I worry that I won't be able to bike as well or as far. I worry about my business.
Then I say all the positive affirmations I can think of. I will be fine. I will recover. Look at C, (and I go down the list of all the survivors I know). I have trust, faith and hope. Then I am back to one of my work mantras, "Hope is a poor planning tool." This is all interesting drama for a woman who has always thought that if I just work hard enough I can make everything turn out all right.
In this case, hope, faith and trust are all I have (along with some great doctors). I will do yoga and meditate today to calm my mind so the monsters can't creep in. And I will turn on some more lights, to keep away the dark.
Dr. Holland, I have these three gremlins in my head. One of them is on one side saying, "Jack, you're going to lick this--don't worry." Another is on the other side saying, "Jack, you dope, you know you aren't going to make it." And in the middle is this third little guy who has to make sense of both of them and help me to keep going on with my life day after day. Sometimes, they get so loud I can't think, but most of the time I keep them locked up, and when I'm busy they don't bother me.
When I was 6 or 7 I thought there were monsters under the bed and in the back corners of my closet. I perfected this running jump practically from my doorway all the way into my bed because I was sure if I didn't the monsters could grab my ankles and drag me under. I thought I would never be seen or heard from again. My monsters are back (or gremlins as Jack calls them). My monsters are these thoughts that creep into my mind and body creating anxiety. I get lost in the tug of war of thoughts and I end up somewhere far away. Ken can tell, he tries hard to pull me back, reaching out and squeezing my hand or wrapping me in a hug.
In the daytime, I can keep busy; dealing with hospital and doctor plans, making pies and plans for Thanksgiving, getting work ready for me to be gone for a while, dealing with meal planning while I am down. While worrying about food (one of my favorite hobbies) my mother in law said this weekend, "They will manage to eat. Don't worry." That was one of the moments it clicked for me. Worrying about that keeps my mind quiet. It stops the racing "what if" thoughts. It keeps those monsters under the bed.
Dark is the worst. And the worst of the worst is being in the Dark with nothing to do. I sat in a car for three hours in the dark this weekend. I was scared. I worried that even if they get all the cancer during my surgery that I will still worry that the cancer is there. I worried that I will need chemotherapy. I worry about the side effects of the Tamoxifen. I worry that I won't be able to bike as well or as far. I worry about my business.
Then I say all the positive affirmations I can think of. I will be fine. I will recover. Look at C, (and I go down the list of all the survivors I know). I have trust, faith and hope. Then I am back to one of my work mantras, "Hope is a poor planning tool." This is all interesting drama for a woman who has always thought that if I just work hard enough I can make everything turn out all right.
In this case, hope, faith and trust are all I have (along with some great doctors). I will do yoga and meditate today to calm my mind so the monsters can't creep in. And I will turn on some more lights, to keep away the dark.
Thursday, November 26, 2009
Happy Thanksgiving
Thanksgiving is my favorite holiday. I love the food. Turkey with crispy skin, mashed potatoes, sweet potatoes, fresh rolls, cranberries. The whole smell that starts days before with apple pies, pumpkin pies, lemon pound cake. Heck, I even like brussel sprouts (not that I did when I was younger but I do now). I treasure that you know what you are cooking each year but that you can still play with the recipes to make things a little different. I like that different families have different food traditions. It is the only holiday where you actually have to figure out oven time so you can get everything done! I enjoy setting the table and how the crystal glasses glow. I love that it is a whole holiday dedicated to giving thanks. I love the joy I see in my son about family coming.
No presents. Family and friends. I am thankful. Thankful to family who have come from far away to be with us. Thankful to the many close friends who have called and emailed their support and caring about us. So today is not about cancer it is about being thankful for all we have in our lives. Thank you. I wish you joy as you celebrate.
No presents. Family and friends. I am thankful. Thankful to family who have come from far away to be with us. Thankful to the many close friends who have called and emailed their support and caring about us. So today is not about cancer it is about being thankful for all we have in our lives. Thank you. I wish you joy as you celebrate.
Monday, November 23, 2009
Sticking the Pin in the Calendar
So, as most of the people who know me really well know, I am NOT a patient person. Really, you don't even have to know me very well to know that. Once I decide to move I move. I don't sit long or well.
Yesterday I made my decision. I am going to have a bilateral mastectomy. I decided the ongoing surveillance needed because of my cystic breasts, the likelihood of recurrence, the potential "differences" of shape if I get one breast done (and then have to get plastic surgery on the other to match) and my age does not balance out for me with lumpectomy.
Please don't get me wrong. I'd rather keep my own breasts. It's just that right now that doesn't feel like a very good option. I don't want to get mammograms every 6 months, then ultrasounds when they find more cysts, then biopsies when they think those "might be suspicious". I am already scheduled for another biopsy next week for a cyst with something unusual about it. Then I get to hang around bruised and sore for weeks while I recover. It has been three weeks and I still have a hematoma and am black and blue from the last biopsies. I'm 47 years old. I'd rather be riding my bike. I'd rather be doing yoga. I don't want to worry.
I'm known at work for saying "work is not a hobby". Well, I'm not thinking being a cancer patient is a hobby I want either. C, the cancer survivor, said something profound the other day when I met with her. She said, "cancer came into my life, taught me some lessons, rearranged the furniture and left". For her, rearranging the furniture was getting new breasts. I'm thinking that is fine. It is here, in my house. I have to deal with it. I'm sure over the next six months there will be plenty of things I will learn and things it will rearrange but I don't want it hanging around as a hobby for the next 20 years. I want it to leave.
During our conversations I found that C waited 6 weeks for an appointment with the surgeon and plastic surgeon together. All day yesterday I kept thinking I do not want to end 2009 with cancer in my body if I can help it. So before I even have had my appointment with the plastic surgeon, I called and asked his office manager and asked when I could schedule. I meet him for the first time Tuesday at 10:30 a.m. The office manager seemed a little surprised but not totally shocked at my request. She said that she had just booked the last patient on December 17th that she thought she could book before the holidays with the two doctors.
I asked her to check and see what she could do. I expressed to her that I really wanted to heal over the holidays with my family. I gently asked her to call me back. When I was talking to my mother a few minutes later I mentioned that I was waiting for a time but that I was worried I would have to wait until after New Years. . I said I would have to figure out who I could beg to get in before the holidays. My mother said "not to worry, there will be a cancellation."
My thought when my mom said there will be a cancellation was "from her mouth to God's ears".
My phone rang 20 minutes later. It was the manager for the plastic surgeon, she had a cancellation, would December 14th do? It will do. Tuesday I meet with another surgeon, the plastic surgeon and a different plastic surgeon to confirm my choices.
Yesterday I made my decision. I am going to have a bilateral mastectomy. I decided the ongoing surveillance needed because of my cystic breasts, the likelihood of recurrence, the potential "differences" of shape if I get one breast done (and then have to get plastic surgery on the other to match) and my age does not balance out for me with lumpectomy.
Please don't get me wrong. I'd rather keep my own breasts. It's just that right now that doesn't feel like a very good option. I don't want to get mammograms every 6 months, then ultrasounds when they find more cysts, then biopsies when they think those "might be suspicious". I am already scheduled for another biopsy next week for a cyst with something unusual about it. Then I get to hang around bruised and sore for weeks while I recover. It has been three weeks and I still have a hematoma and am black and blue from the last biopsies. I'm 47 years old. I'd rather be riding my bike. I'd rather be doing yoga. I don't want to worry.
I'm known at work for saying "work is not a hobby". Well, I'm not thinking being a cancer patient is a hobby I want either. C, the cancer survivor, said something profound the other day when I met with her. She said, "cancer came into my life, taught me some lessons, rearranged the furniture and left". For her, rearranging the furniture was getting new breasts. I'm thinking that is fine. It is here, in my house. I have to deal with it. I'm sure over the next six months there will be plenty of things I will learn and things it will rearrange but I don't want it hanging around as a hobby for the next 20 years. I want it to leave.
During our conversations I found that C waited 6 weeks for an appointment with the surgeon and plastic surgeon together. All day yesterday I kept thinking I do not want to end 2009 with cancer in my body if I can help it. So before I even have had my appointment with the plastic surgeon, I called and asked his office manager and asked when I could schedule. I meet him for the first time Tuesday at 10:30 a.m. The office manager seemed a little surprised but not totally shocked at my request. She said that she had just booked the last patient on December 17th that she thought she could book before the holidays with the two doctors.
I asked her to check and see what she could do. I expressed to her that I really wanted to heal over the holidays with my family. I gently asked her to call me back. When I was talking to my mother a few minutes later I mentioned that I was waiting for a time but that I was worried I would have to wait until after New Years. . I said I would have to figure out who I could beg to get in before the holidays. My mother said "not to worry, there will be a cancellation."
My thought when my mom said there will be a cancellation was "from her mouth to God's ears".
My phone rang 20 minutes later. It was the manager for the plastic surgeon, she had a cancellation, would December 14th do? It will do. Tuesday I meet with another surgeon, the plastic surgeon and a different plastic surgeon to confirm my choices.
Saturday, November 21, 2009
The EXAMINATION (Yoga at it's best)
Today, I got to see the results of another woman's bilateral mastectomy and reconstruction. Up close and personal. I was a little nervous going up in the elevator of my old apartment building. And her apartment was one of the last ones at the end of the hall. It was a long walk. I could hear her clogs as she walked across the floor to answer the door.
Since I first found out I had Breast Cancer people have said, would you like to talk to ... she has had breast cancer. It is a little overwhelming as there as so many types of breast cancer and these people are strangers from all across the country. And you don't know but they might be really strange! But this woman, C (as I will call her), was one I had to reach out to. She has a family history. She had DCIS and a mass. She caught it early. She used Dr. Bethke and Dr. Fine for surgery and reconstruction. She loves yoga. She lives in the building where I lived in my early 20's before I was married. There were a lot of common touchpoints. There are a couple of differences, she is 58 and post-menopausal.
Women who have gone through breast cancer are generous. You call them on the phone on some random impulse thinking they can shed some light on this process or decision and then at that exact moment they spend an hour with you. It doesn't matter if dinner gets cold or the laundry sits unfolded. They are the only ones who truly understand what you are going through and they want to help.
All week long I have talked to close friends about this generous woman. After an hour of conversation on the phone earlier in the week, she said, "I don't mean to be forward but would you like to come see and touch my new breasts." I was a little taken aback but immediately stumbled and then said yes. I am sure seeing the real thing will be so much different. I have searched on line, look at pictures in the doctors office and these peoples bodies look nothing like mine. I am hopeful that it will help me to decide.
We agreed to meet today after she did yoga and I worked out with my trainer (who sees it as his job to try to build as much muscle as possible before I have surgery ~ in other words to kill me). When she answers the door, I am shocked by how tiny and gorgeous she is. She is fit and has a yoga face. I am not sure if you will know what that means. But people that do a lot of yoga look comfortable in their faces. They don't usually wear a lot of makeup. They look like they like themselves. (Other people who don't do yoga can look like this too but I see it a lot in yoga folks). C is gorgeous and healthy even after a summer of surgeries.
We sit on her couch, in her beautiful apartment looking out over the lake, and we talk. We talk about how to decide. We talk about family and kids. We talk about surgery and what will be hard and what to expect from every step in the process. And then the moment comes. C lowers a couple shades. "No reason to give the neighbors a show," she jokes. And she takes off her hoodie and then her shirt. She looks great. Different but great. We examine scars and skin and she tells me what it feels like and what she likes about how it turned out and what she would like to have the plastic surgeon change (just a little bit). We talk about size and sensation and it seems like a very normal discussion. Perhaps it is for two women; one who has been cured of cancer and one who has just gotten cancer.
C is back to backbends, handstands and arm stands. She shows me the rotation in her arms and what it looks like when she squeezes the muscles in her chest as the implants are underneath the muscle. She is right, it is different but it is fine. Most people would never know. The scars are minimal and she only had surgery the end of June. Once she has nipples and tatoos, I don't think most people walking by her (even naked if she was in the gym showers) would notice. Full mobility, strong enough for Ashtanga or Flow yoga.
C is joyous. You will go on all your bike trips, she says. You just have to get through now.
On the way home I breathe.
Since I first found out I had Breast Cancer people have said, would you like to talk to ... she has had breast cancer. It is a little overwhelming as there as so many types of breast cancer and these people are strangers from all across the country. And you don't know but they might be really strange! But this woman, C (as I will call her), was one I had to reach out to. She has a family history. She had DCIS and a mass. She caught it early. She used Dr. Bethke and Dr. Fine for surgery and reconstruction. She loves yoga. She lives in the building where I lived in my early 20's before I was married. There were a lot of common touchpoints. There are a couple of differences, she is 58 and post-menopausal.
Women who have gone through breast cancer are generous. You call them on the phone on some random impulse thinking they can shed some light on this process or decision and then at that exact moment they spend an hour with you. It doesn't matter if dinner gets cold or the laundry sits unfolded. They are the only ones who truly understand what you are going through and they want to help.
All week long I have talked to close friends about this generous woman. After an hour of conversation on the phone earlier in the week, she said, "I don't mean to be forward but would you like to come see and touch my new breasts." I was a little taken aback but immediately stumbled and then said yes. I am sure seeing the real thing will be so much different. I have searched on line, look at pictures in the doctors office and these peoples bodies look nothing like mine. I am hopeful that it will help me to decide.
We agreed to meet today after she did yoga and I worked out with my trainer (who sees it as his job to try to build as much muscle as possible before I have surgery ~ in other words to kill me). When she answers the door, I am shocked by how tiny and gorgeous she is. She is fit and has a yoga face. I am not sure if you will know what that means. But people that do a lot of yoga look comfortable in their faces. They don't usually wear a lot of makeup. They look like they like themselves. (Other people who don't do yoga can look like this too but I see it a lot in yoga folks). C is gorgeous and healthy even after a summer of surgeries.
We sit on her couch, in her beautiful apartment looking out over the lake, and we talk. We talk about how to decide. We talk about family and kids. We talk about surgery and what will be hard and what to expect from every step in the process. And then the moment comes. C lowers a couple shades. "No reason to give the neighbors a show," she jokes. And she takes off her hoodie and then her shirt. She looks great. Different but great. We examine scars and skin and she tells me what it feels like and what she likes about how it turned out and what she would like to have the plastic surgeon change (just a little bit). We talk about size and sensation and it seems like a very normal discussion. Perhaps it is for two women; one who has been cured of cancer and one who has just gotten cancer.
C is back to backbends, handstands and arm stands. She shows me the rotation in her arms and what it looks like when she squeezes the muscles in her chest as the implants are underneath the muscle. She is right, it is different but it is fine. Most people would never know. The scars are minimal and she only had surgery the end of June. Once she has nipples and tatoos, I don't think most people walking by her (even naked if she was in the gym showers) would notice. Full mobility, strong enough for Ashtanga or Flow yoga.
C is joyous. You will go on all your bike trips, she says. You just have to get through now.
On the way home I breathe.
Friday, November 20, 2009
Another Surgeon, a different approach
One thing that I have been struggling with all day that I wish someone could explain to me. How can two very very educated and respected breast cancer surgeons have such different statistics? Dr. Bethke said, he thought my odds of recurrence if I had a bilateral mastectomy were 2-3 %. This other surgeon, 6-8%. If a lumpectomy, Dr. B says 30% (given my family history). The other 20%. Not that 20 or 30 is good or that one of the other is going to push me one direction or the other. It just makes me crazy to try and figure out what is really accurate.
I am tired tonight. Ken put the words to something yesterday that has been happening for the last two weeks. We are struggling to find normal. We both usually exercise 4-6 times a week and we are lucky if we are working out twice a week. We take turns cooking, each cooking two to three nights a week and then Sushi another night. We aren't eating well, last night was frozen pizza (which is usually reserved for nights when we have tried something experimental and it didn't turn out edible!) We usually are at work at 8:30 most days and we aren't getting there until 9 or 9:30 or 10. And I really can't tell you how we are spending the time. I feel like I am slogging in mud. And I feel bad for the women in the two next offices to me who have to hear me agonizing each day over the decisions I have to make. I am sure that soon they will be thinking, "will she just make up her mind!" And I am annoyed at myself that by 3 p.m. or 4 p.m., I am so tired I bail and head to curl up in bed for an hour while everyone else is still working hard.
This morning we went to see the second surgeon. He was very professional. He could tell we were coming in for a second opinion and he was very gracious about it. He said he doubted that he would find anything different than Northwestern had found but that he would have his team review it. He said he works very well with Dr. Hanson (the head surgeon there) and asked me when I was going to see her. I sheepishly answered Tuesday. I handed over pathology slides, Cd's with lots of mammograms, ultrasound and MRI pictures and copies and copies of medical records and reports. It is amazing how much stuff. Ken carries my bag around as it is so heavy with paperwork. This doctor was amazingly thorough. It is hard to focus so sincerely for an hour on things that are so important that you are trying to catch every word and every meaning.
This doctor and gentlemen is an exceptional surgeon. Several women who had surgery by him raved about how wonderful he was. He was knowledgeable. We learned a different process, his approach is much more traditional.
I am tired tonight and trying to be cautious about what I say. I don't think I will use this surgeon and the only reason I can tell you is because I got along with the other one better. Dr. Bethke seemed better able to "go with the flow". I am not a person who is very willing to wait and ask all my questions at the end. I like the give and take of conversation. I learn better that way. I think better that way. I like a little humor. Ok, I like a lot of humor and even a touch of sarcasm. Dr. Bethke had this great line when I asked about how badly disfigured I would be. He said, "you need to give me more credit than that!" With this wonderful wry smile on his face. This doctor when I tried to insert one of my classic "train of thought" questions, got just the tiniest facial tic and said, "I'll get to that." But I learned a lot and heard a very different point of view. It was worth every minute of our time.
I am tired tonight. Ken put the words to something yesterday that has been happening for the last two weeks. We are struggling to find normal. We both usually exercise 4-6 times a week and we are lucky if we are working out twice a week. We take turns cooking, each cooking two to three nights a week and then Sushi another night. We aren't eating well, last night was frozen pizza (which is usually reserved for nights when we have tried something experimental and it didn't turn out edible!) We usually are at work at 8:30 most days and we aren't getting there until 9 or 9:30 or 10. And I really can't tell you how we are spending the time. I feel like I am slogging in mud. And I feel bad for the women in the two next offices to me who have to hear me agonizing each day over the decisions I have to make. I am sure that soon they will be thinking, "will she just make up her mind!" And I am annoyed at myself that by 3 p.m. or 4 p.m., I am so tired I bail and head to curl up in bed for an hour while everyone else is still working hard.
This morning we went to see the second surgeon. He was very professional. He could tell we were coming in for a second opinion and he was very gracious about it. He said he doubted that he would find anything different than Northwestern had found but that he would have his team review it. He said he works very well with Dr. Hanson (the head surgeon there) and asked me when I was going to see her. I sheepishly answered Tuesday. I handed over pathology slides, Cd's with lots of mammograms, ultrasound and MRI pictures and copies and copies of medical records and reports. It is amazing how much stuff. Ken carries my bag around as it is so heavy with paperwork. This doctor was amazingly thorough. It is hard to focus so sincerely for an hour on things that are so important that you are trying to catch every word and every meaning.
This doctor and gentlemen is an exceptional surgeon. Several women who had surgery by him raved about how wonderful he was. He was knowledgeable. We learned a different process, his approach is much more traditional.
I am tired tonight and trying to be cautious about what I say. I don't think I will use this surgeon and the only reason I can tell you is because I got along with the other one better. Dr. Bethke seemed better able to "go with the flow". I am not a person who is very willing to wait and ask all my questions at the end. I like the give and take of conversation. I learn better that way. I think better that way. I like a little humor. Ok, I like a lot of humor and even a touch of sarcasm. Dr. Bethke had this great line when I asked about how badly disfigured I would be. He said, "you need to give me more credit than that!" With this wonderful wry smile on his face. This doctor when I tried to insert one of my classic "train of thought" questions, got just the tiniest facial tic and said, "I'll get to that." But I learned a lot and heard a very different point of view. It was worth every minute of our time.
Wednesday, November 18, 2009
Dr. Bethke, the first surgeon
Dr. Bethke is the first doctor of all of them to make sense to me. Ok, he is the first one I get to see but not the first one I called for an appointment. He is the sixth or seventh I called for an appointment. He is the ONLY one who sent me instructions. His instructions are titled, "Step-by-Step Guide for Patients with Newly Diagnosed Breast Cancer". Here is the opening paragraphs, "
I’ve created this guide to help you navigate the medical system and to make the journey from initial diagnosis to surgical treatment as easy as possible.
Although you have recently been diagnosed with breast cancer, don’t panic. Often the most difficult aspect of being told you have a newly diagnosed breast cancer is fear of the unknown. This guide will help you gather the necessary information, obtain the appropriate tests and consultations and then make an informed and timely decision.
Together, we need to gather all of the pertinent information (mammograms, ultrasound, MRI, pathology results) and then develop a plan that is tailored to your specific circumstances. You’ll have plenty of time to ask questions, seek second opinions and then make an informed and rational decision that is best for you. Remember, breast cancer is not a medical emergency but it may be a psychological emergency.
And then it is followed with how to do this, who you need to talk to, what to do. By the time I get this, I have already done most of these things. Someone in Radiology ought to give this to you the day they tell you that you have cancer. I especially like the it's not a medical emergency but it is a pyschological one. I keep repeating that in the back of my head. I keep reminding myself NOT to make it such a pyschological issue.
Back to the Lynn Sage Breast Center at Northwestern Memorial Hospital. In the parking garage they have different music on every level so you'll remember which level you are on. Ken jokes that by the time we are done, he will be able to sing all the songs.
My appointment was for 10:00 a.m., we walked in right on time. On time to fill out more forms. The 15 page history questionnaire they sent with the instructions wasn't enough? But they aren't that long and they are just privacy forms. I try hard not to pace waiting in the room. A medical student comes in and takes a perfunctory history. He is half the size of my 16 year old son. It is hard to look at him and think he is a grown up. His hands look like they are shaking. After the history he asks me to sit on the table so he can examine me. I say no, I'll wait for Dr. Bethke. No offense, but there isn't anything to feel. He probably would have gotten me to go along if he had looked and acted more confident, like he had done this at least once before.But I felt like I was his first patient visit.
Dr. Bethke shows up, I am not sure how this will work, Ken is sitting there. I am in a gown. The medical student is there. Are we going to talk in this little tiny examining room with two chairs? But Bethke says, "let's examine you and then we'll go into a conference room to talk." He is older than I think he will be. But he just exudes that air that he is competent. After the exam, where he says, "they are too small to feel" (told you!), we go to a small conference room.
Then he goes through another form about what my options are and how to decide. It's all on a piece of paper. Very helpful. He draws a few pictures, shows a few photographs. We talk about how it is popular for women to get a double mastectomy right now. He says it is because we are assaulted in the media with all this breast cancer. In my brain, I am screaming that maybe it is because THERE IS SO MUCH BREAST CANCER. Overall, he was exceptional. I could trust him. He looked me right in the eye. He answered questions honestly. He didn't say one thing "wrong" or off. He is very experienced. I am keeping an open mind about my options and going to visit more doctors later in the week.
I’ve created this guide to help you navigate the medical system and to make the journey from initial diagnosis to surgical treatment as easy as possible.
Although you have recently been diagnosed with breast cancer, don’t panic. Often the most difficult aspect of being told you have a newly diagnosed breast cancer is fear of the unknown. This guide will help you gather the necessary information, obtain the appropriate tests and consultations and then make an informed and timely decision.
Together, we need to gather all of the pertinent information (mammograms, ultrasound, MRI, pathology results) and then develop a plan that is tailored to your specific circumstances. You’ll have plenty of time to ask questions, seek second opinions and then make an informed and rational decision that is best for you. Remember, breast cancer is not a medical emergency but it may be a psychological emergency.
And then it is followed with how to do this, who you need to talk to, what to do. By the time I get this, I have already done most of these things. Someone in Radiology ought to give this to you the day they tell you that you have cancer. I especially like the it's not a medical emergency but it is a pyschological one. I keep repeating that in the back of my head. I keep reminding myself NOT to make it such a pyschological issue.
Back to the Lynn Sage Breast Center at Northwestern Memorial Hospital. In the parking garage they have different music on every level so you'll remember which level you are on. Ken jokes that by the time we are done, he will be able to sing all the songs.
My appointment was for 10:00 a.m., we walked in right on time. On time to fill out more forms. The 15 page history questionnaire they sent with the instructions wasn't enough? But they aren't that long and they are just privacy forms. I try hard not to pace waiting in the room. A medical student comes in and takes a perfunctory history. He is half the size of my 16 year old son. It is hard to look at him and think he is a grown up. His hands look like they are shaking. After the history he asks me to sit on the table so he can examine me. I say no, I'll wait for Dr. Bethke. No offense, but there isn't anything to feel. He probably would have gotten me to go along if he had looked and acted more confident, like he had done this at least once before.But I felt like I was his first patient visit.
Dr. Bethke shows up, I am not sure how this will work, Ken is sitting there. I am in a gown. The medical student is there. Are we going to talk in this little tiny examining room with two chairs? But Bethke says, "let's examine you and then we'll go into a conference room to talk." He is older than I think he will be. But he just exudes that air that he is competent. After the exam, where he says, "they are too small to feel" (told you!), we go to a small conference room.
Then he goes through another form about what my options are and how to decide. It's all on a piece of paper. Very helpful. He draws a few pictures, shows a few photographs. We talk about how it is popular for women to get a double mastectomy right now. He says it is because we are assaulted in the media with all this breast cancer. In my brain, I am screaming that maybe it is because THERE IS SO MUCH BREAST CANCER. Overall, he was exceptional. I could trust him. He looked me right in the eye. He answered questions honestly. He didn't say one thing "wrong" or off. He is very experienced. I am keeping an open mind about my options and going to visit more doctors later in the week.
Surgeon Dreams
After you talk to a surgeon, you go to sleep and you dream of cancer and surgery. I mean what little I do sleep, I do anyway. Those people close to me know I don't sleep much. I used to sleep from 10-4 a.m. and when I got up, I thought about work. I would review reports, think about the people and think about how to grow my business. Now I am lucky if I can stay awake until 10, but then I fall asleep and every day I wake up at 2, or 2:09, one day 2:39 and then I think about cancer. I lay in bed and toss and turn for a while but then I get up and come into our study and I read, or search the internet trying to understand breast cancer. One morning, at 3 a.m. I called my college roommate in South Africa.
The nurse today in the office asked a bunch of pre-surgical questions and one of them was do you have a sleep disorder? A disorder, no. But I looked at her and said, "Who sleeps?"
If I'm laying in bed, I pray that I will be lucky and my cancer will fit the right profiles and I will not have to have chemotherapy.
I heard today about Tamoxofin and radiation. I heard today about genetic testing. My mother (a survivor) got tested years ago for BRCA (the cancer genetic test) and the test was negative. But the doctor I saw today is suggesting that I get tested and see the genetics people anyway. He would bet, given my family history, that my cancer is genetic. But that it might be a genetic kind that they don't know about yet. He said we will probably never know.
All of this discussion, (I almost wrote, "of course", like duh, everyone knows this), revolves around what kind of surgery to get and the "odds". The chances of reoccurance. If I am a candidate for a lumpectomy (which I would have to go get another biopsy to confirm), I have to get radiation, take Tamoxifin and if there is something genetic (known or unknown) my risk of reoccurance is 30%. If I get a mastectomy of my breast with cancer, he thinks no radiation, I get to take Tamoxifin, and my risk of reoccurance is 30%. If I get a double mastectomy, no radiation, yes Tamoxifin, my risk of reoccurance is 2-3%. No one knows until they fully evaluate the cancer and whether I have any lymph node involvement whether I will need chemotherapy (but they are hopeful I won't).
Tamoxifin will put me into menopause. Welcome hot flashes, and hysteria. Five years. The doctor today thinks I will get that no matter what I do. It is up to the general oncologist but he said, "I don't want you to walk out of here with hope that you won't have to take Tamoxifin."
I know there is big news on TV and in the papers today about mammograms. And I just kept thinking after the conversation with the surgeon and reading the front page of the paper this morning, does everybody really understand what they are saying? What they are saying is that the odds don't get better finding it earlier. Even simpler, it doesn't change the odds of how many women are going to die or the likelihood that you will live or die from breast cancer. Your cancer decides that.
That is why I sit and pray about the profile of my cancer. That is why the surgeon today said I should be happy my cancer is Hormone receptor positive. It is good news because it shows I have a curable kind of cancer. I will live.
The nurse today in the office asked a bunch of pre-surgical questions and one of them was do you have a sleep disorder? A disorder, no. But I looked at her and said, "Who sleeps?"
If I'm laying in bed, I pray that I will be lucky and my cancer will fit the right profiles and I will not have to have chemotherapy.
I heard today about Tamoxofin and radiation. I heard today about genetic testing. My mother (a survivor) got tested years ago for BRCA (the cancer genetic test) and the test was negative. But the doctor I saw today is suggesting that I get tested and see the genetics people anyway. He would bet, given my family history, that my cancer is genetic. But that it might be a genetic kind that they don't know about yet. He said we will probably never know.
All of this discussion, (I almost wrote, "of course", like duh, everyone knows this), revolves around what kind of surgery to get and the "odds". The chances of reoccurance. If I am a candidate for a lumpectomy (which I would have to go get another biopsy to confirm), I have to get radiation, take Tamoxifin and if there is something genetic (known or unknown) my risk of reoccurance is 30%. If I get a mastectomy of my breast with cancer, he thinks no radiation, I get to take Tamoxifin, and my risk of reoccurance is 30%. If I get a double mastectomy, no radiation, yes Tamoxifin, my risk of reoccurance is 2-3%. No one knows until they fully evaluate the cancer and whether I have any lymph node involvement whether I will need chemotherapy (but they are hopeful I won't).
Tamoxifin will put me into menopause. Welcome hot flashes, and hysteria. Five years. The doctor today thinks I will get that no matter what I do. It is up to the general oncologist but he said, "I don't want you to walk out of here with hope that you won't have to take Tamoxifin."
I know there is big news on TV and in the papers today about mammograms. And I just kept thinking after the conversation with the surgeon and reading the front page of the paper this morning, does everybody really understand what they are saying? What they are saying is that the odds don't get better finding it earlier. Even simpler, it doesn't change the odds of how many women are going to die or the likelihood that you will live or die from breast cancer. Your cancer decides that.
That is why I sit and pray about the profile of my cancer. That is why the surgeon today said I should be happy my cancer is Hormone receptor positive. It is good news because it shows I have a curable kind of cancer. I will live.
Monday, November 16, 2009
MRI Results
I was really having a great day. I spent 45 minutes this morning talking to a recent survivor (a friend of a friend) in Arizona, who although she is 58 and post-menopausal, has very similar cancer to mine. She was so reassuring, so honest, so positive. I was able to ask her things I haven't dared to say out loud to anyone else. She was back playing golf, and taking vacations and doing all the things she normally does 6 weeks after surgery. Her surgery was a snap. They tried to do a lumpectomy but ended up doing a mastectomy because they couldn't get it all, and she didn't even sound upset about that. Her reconstruction even went pretty well. I was kind of floating, thinking this could be a lot easier than I thought.
Then the phone rang. They weren't supposed to call me until Wednesday with the results of my MRI. So I was pretty thrown off when my cell phone rang while I was at the office. The fellow said her name and I really didn't catch it. But then she said she was calling with the MRI results. And boom, right into them.
She said there was "nothing exciting about my left breast." I hadn't really thought of breast MRI's in terms of finding things as being exciting but those really were her words. The fact that I don't have cancer in it seems pretty exciting to me, but what do I know! Then she said they found something "interesting" in a new spot in my right breast, far away from the other two spots. It could just be a fluid filled cyst but she said her attending "didn't like the nodular rim".
She wanted to schedule me to come in right away and get another biopsy or have them pull out the fluid and see what they see. I said thank you but no. She seemed a little taken back. But I have now read enough that I am starting to manage my own care. I have read a lot about breast MRI's and that they give a lot of false positives.
I am going to see a surgeon in the morning. I told her, I'll talk to him first. I told her I wasn't procedure happy, if they're going to cut off my breast in a few weeks, they can look at it then and figure out if it's cancer or a cyst. And well, if he thinks a lumpectomy is the way to go and he really wants me to get a biopsy, I'll think about it. But voluntarily getting another biopsy while I already know I have cancer and am going to have surgery is overkill. Actually another biopsy anytime in this lifetime would not be on my list. She sounded very disappointed. I think she was looking forward to the work.
Then the phone rang. They weren't supposed to call me until Wednesday with the results of my MRI. So I was pretty thrown off when my cell phone rang while I was at the office. The fellow said her name and I really didn't catch it. But then she said she was calling with the MRI results. And boom, right into them.
She said there was "nothing exciting about my left breast." I hadn't really thought of breast MRI's in terms of finding things as being exciting but those really were her words. The fact that I don't have cancer in it seems pretty exciting to me, but what do I know! Then she said they found something "interesting" in a new spot in my right breast, far away from the other two spots. It could just be a fluid filled cyst but she said her attending "didn't like the nodular rim".
She wanted to schedule me to come in right away and get another biopsy or have them pull out the fluid and see what they see. I said thank you but no. She seemed a little taken back. But I have now read enough that I am starting to manage my own care. I have read a lot about breast MRI's and that they give a lot of false positives.
I am going to see a surgeon in the morning. I told her, I'll talk to him first. I told her I wasn't procedure happy, if they're going to cut off my breast in a few weeks, they can look at it then and figure out if it's cancer or a cyst. And well, if he thinks a lumpectomy is the way to go and he really wants me to get a biopsy, I'll think about it. But voluntarily getting another biopsy while I already know I have cancer and am going to have surgery is overkill. Actually another biopsy anytime in this lifetime would not be on my list. She sounded very disappointed. I think she was looking forward to the work.
Saturday, November 14, 2009
Bilateral Breast MRI, another weird test
Overall, I am intrigued by how impersonal it all is. The questions before, do you have kidney issues, other cancers, and the list went on. I realize they probably have to be impersonal. I think they must not understand how monumental it all is. It just all feels a little off. All they keep saying is "are you ok". I am not sure what that means. Well, I'm ok. I'm not claustrophobic. I'm not going to burst into tears on you. Or throw up, even though that is how I feel almost all day, most days. At some point I am gong to scream "No, I am not ok." But I am too polite to scream at these very pleasant people who are doing what they have to do to take care of me. Today or maybe just not yet, I can't get my mind around the fact that I have cancer.
I only have one good vein. Every blood test I have ever had has been done has been on my right arm. I have this great thick bold vein, right down the center of my right arm. Perfect. Even the bad phlebotomy people can work with that vein and not turn me black and blue. Well, today was the end of that. I think they are never going to take blood from that arm again. When I tried to get her to put the IV on that side she just kept repeating but that is the side with the cancer. And this side has no cancer, right? And then I tried again, and she said, that is the side with the biopsy right? And this side no, right? She is right. But the vein in my left arm is crummy, near the bone and it took her, a talented nurse (you know how you can tell from how they are sticking you), a long time to get it working for the IV. I can see the black and blue from here on out. Not from her but from every inexperienced person drawing blood in the future.
2500 pictures in 40 minutes while you are laying perfectly still. You have to lay face down like you are on a massage table but it is not nearly that comfortable and bony pieces of the table and the machine stick into you. Then you are pushed into a long metal tube. The entire time, I felt this immense pressure on my forehead and on my breast bone.
I tried hard to meditate, just focusing on the in and out of my breath. Thank goodness for my yoga training as the banging, clanging and whirring of the machines was SO LOUD that you wear ear plugs and still it seems like you are in a freaky disco with a slightly off kilter hip hop beat. And I just kept counting my breath while the tech would say, this one is 8 minutes, this next is 4 minutes, now one minute rest and then 6 minutes more. Doing nothing but breathing, the time went pretty quickly.
I bought Oreos yesterday and made brownies today. In my world, everything is better if you just have more chocolate.
I only have one good vein. Every blood test I have ever had has been done has been on my right arm. I have this great thick bold vein, right down the center of my right arm. Perfect. Even the bad phlebotomy people can work with that vein and not turn me black and blue. Well, today was the end of that. I think they are never going to take blood from that arm again. When I tried to get her to put the IV on that side she just kept repeating but that is the side with the cancer. And this side has no cancer, right? And then I tried again, and she said, that is the side with the biopsy right? And this side no, right? She is right. But the vein in my left arm is crummy, near the bone and it took her, a talented nurse (you know how you can tell from how they are sticking you), a long time to get it working for the IV. I can see the black and blue from here on out. Not from her but from every inexperienced person drawing blood in the future.
2500 pictures in 40 minutes while you are laying perfectly still. You have to lay face down like you are on a massage table but it is not nearly that comfortable and bony pieces of the table and the machine stick into you. Then you are pushed into a long metal tube. The entire time, I felt this immense pressure on my forehead and on my breast bone.
I tried hard to meditate, just focusing on the in and out of my breath. Thank goodness for my yoga training as the banging, clanging and whirring of the machines was SO LOUD that you wear ear plugs and still it seems like you are in a freaky disco with a slightly off kilter hip hop beat. And I just kept counting my breath while the tech would say, this one is 8 minutes, this next is 4 minutes, now one minute rest and then 6 minutes more. Doing nothing but breathing, the time went pretty quickly.
I bought Oreos yesterday and made brownies today. In my world, everything is better if you just have more chocolate.
Friday, November 13, 2009
Pathology Reports and the run around
I have been reading and researching a lot. I know that the preliminary pathology report that I have is incomplete. They have sent it out for Immunohistochemical analysis. I have no idea what that means except that it will tell identifying characteristics of "my" cancer.
So over the last few days I have checked out the Northwestern Memorial Hospital (NMH) website and found the form that tells me how to get the pieces I need to get a second opinion at an outside doctor (not an NMH dr). I need the actual slides, actual mammogram images, ultrasound images, medical records, pathology reports. It isn't easy.
I have to call Medical records to get the paper copies. Medical Records will leave the records on the first floor in the Patient Service Center by the next day. Easy I think. Then they tell me to call the Pathology department to get the actual slides that have my tissue on it so the other doctor can review them. Ok, a little more difficult, I have to pick them up in another building in the actual pathology department and sign a different release. Then, I have to call the Imaging department to get my mammograms, ultrasounds, and my MRI (when it's done tomorrow). Again different place, different form. But it seems easy, they will even do it when I am there for my MRI. Everyone is still very nice, but this feels like I don't have time to work. Not that I am really thinking about work enough anyway.
I am still sitting here staring at this incomplete pathology report. I know I have to have the complete one, right? It would be waste of time to show up without it.
So I call back Medical records, they have no idea what I am talking about, they don't have the complete copy. They refer me to the breast center, who thinks I may have to speak to the actual radiologist to get the results. Four people later the breast center transfers me to someone else. Forty five minutes total and I end up back in pathology. A very nice young man, cheerful Frances is back on the line. "Mrs. Ringwood your complete report will be in the packet of slides when you pick them up tomorrow." Not in his tone but I am sure thinking, like duh, I should have known, right?
So over the last few days I have checked out the Northwestern Memorial Hospital (NMH) website and found the form that tells me how to get the pieces I need to get a second opinion at an outside doctor (not an NMH dr). I need the actual slides, actual mammogram images, ultrasound images, medical records, pathology reports. It isn't easy.
I have to call Medical records to get the paper copies. Medical Records will leave the records on the first floor in the Patient Service Center by the next day. Easy I think. Then they tell me to call the Pathology department to get the actual slides that have my tissue on it so the other doctor can review them. Ok, a little more difficult, I have to pick them up in another building in the actual pathology department and sign a different release. Then, I have to call the Imaging department to get my mammograms, ultrasounds, and my MRI (when it's done tomorrow). Again different place, different form. But it seems easy, they will even do it when I am there for my MRI. Everyone is still very nice, but this feels like I don't have time to work. Not that I am really thinking about work enough anyway.
I am still sitting here staring at this incomplete pathology report. I know I have to have the complete one, right? It would be waste of time to show up without it.
So I call back Medical records, they have no idea what I am talking about, they don't have the complete copy. They refer me to the breast center, who thinks I may have to speak to the actual radiologist to get the results. Four people later the breast center transfers me to someone else. Forty five minutes total and I end up back in pathology. A very nice young man, cheerful Frances is back on the line. "Mrs. Ringwood your complete report will be in the packet of slides when you pick them up tomorrow." Not in his tone but I am sure thinking, like duh, I should have known, right?
Wednesday, November 11, 2009
Green is such a lovely skin tone
I'm still sore and a lovely shade of green from the biopsies. Ken says the green is from my Irish heritage. I have a knot and some occasional shooting pain into the knot. It looks like a walnut under the skin. I have ignored it for a few days. Thoughts have floated by like "well, this is nothing just wait." But I call the nurses to see if there is something wrong or something I should be doing.
She tells me this is normal. Let me tell you, nothing about this is normal. She says the knot may last 4-6 weeks, it is probably scar tissue or a hematoma (which is some kind of blood bruise?).
I tell her politely, "Well I'm not too sure I'll have this breast in 6 weeks so I guess there is nothing to worry about." It's not like it could get much worse right? Except then the thought passes through what if those shooting pains are blood trying to break down the "knot" and it is carrying the cancer throughout my body. I guess it could get worse. I'll be at the club at 6:45 a.m. to lift.
She tells me this is normal. Let me tell you, nothing about this is normal. She says the knot may last 4-6 weeks, it is probably scar tissue or a hematoma (which is some kind of blood bruise?).
I tell her politely, "Well I'm not too sure I'll have this breast in 6 weeks so I guess there is nothing to worry about." It's not like it could get much worse right? Except then the thought passes through what if those shooting pains are blood trying to break down the "knot" and it is carrying the cancer throughout my body. I guess it could get worse. I'll be at the club at 6:45 a.m. to lift.
Food, Food, Food
I have lost my appetite since I got the news. Monday I took a salad with some poached chicken (Ken had poached the chicken and it was delicious, tender, moist). It sat in the frig. Before going to lift weights, I forced myself to eat a Balance Bar so I would have something in my stomach. In my mind, everything makes me nauseous. Nothing seems to taste good right now. And I keep thinking to myself, "I haven't even started ANY treatment". Maybe this is just because of the news. I feel like I am forcing myself to eat.
I went to a meeting today and there was a spread of fruit and pastries all morning and cookies and pastries all afternoon. It is a meeting I go to once a month and usually a day I say, "ok, to splurge a little".
Today the splurging made me sick. The only thing that really tasted delicious was the pineapple. It was ripe and juicy.
There are messages I have been getting about food in my reading. One, you have cancer eat whatever you want, it might make you feel better. Two, become a vegetarian. I just read an article that says 80% of cancer patients suffer from some form of clinical malnutrition.
Well, the eat whatever you want is not working for me right now.
So what do most of these vegetarian articles suggest cancer patients eat/not eat? 1)Eat Fruits and vegetables 2) Don't eat milk, cheese, butter, red meat,pork, and poultry because of their "fat content". 3) Use good oils such as olive oil, and eat healthy sources of proteins. 4) Eat avocado; nut butters; and soy. 5) No Trans fat 6) Eliminate sugar, honey, high fructose corn syrup, pastries.
So I do all right on 1 and 6. That is about it. Healthy source of proteins, I think they mean soy and whey. So I don't know about you but that sure looks like being a vegetarian to me. And I just can't figure out the vegetarian protein issue. I struggle already to eat enough protein. I already eat too much red meat. Eliminate chicken and pork?
I have followed on and off for 10 years and consistently for the last several years (since losing 20+ pounds), a 30-30-40 diet, meaning 30 % fat, 30 % protein and 40 carbohydrates. As a family we concentrate on organic fruits and vegetables. I supplement with a protein shake to try and up the whey protein and get enough protein. But I can't seem to make this all work out. I end up getting only 25% protein. And I usually end up with too much fat. Which research says feeds cancer.
And I figure that I eat better than at least 50% of the people in the US at least. But for right now, I just am not eating much.
I went to a meeting today and there was a spread of fruit and pastries all morning and cookies and pastries all afternoon. It is a meeting I go to once a month and usually a day I say, "ok, to splurge a little".
Today the splurging made me sick. The only thing that really tasted delicious was the pineapple. It was ripe and juicy.
There are messages I have been getting about food in my reading. One, you have cancer eat whatever you want, it might make you feel better. Two, become a vegetarian. I just read an article that says 80% of cancer patients suffer from some form of clinical malnutrition.
Well, the eat whatever you want is not working for me right now.
So what do most of these vegetarian articles suggest cancer patients eat/not eat? 1)Eat Fruits and vegetables 2) Don't eat milk, cheese, butter, red meat,pork, and poultry because of their "fat content". 3) Use good oils such as olive oil, and eat healthy sources of proteins. 4) Eat avocado; nut butters; and soy. 5) No Trans fat 6) Eliminate sugar, honey, high fructose corn syrup, pastries.
So I do all right on 1 and 6. That is about it. Healthy source of proteins, I think they mean soy and whey. So I don't know about you but that sure looks like being a vegetarian to me. And I just can't figure out the vegetarian protein issue. I struggle already to eat enough protein. I already eat too much red meat. Eliminate chicken and pork?
I have followed on and off for 10 years and consistently for the last several years (since losing 20+ pounds), a 30-30-40 diet, meaning 30 % fat, 30 % protein and 40 carbohydrates. As a family we concentrate on organic fruits and vegetables. I supplement with a protein shake to try and up the whey protein and get enough protein. But I can't seem to make this all work out. I end up getting only 25% protein. And I usually end up with too much fat. Which research says feeds cancer.
And I figure that I eat better than at least 50% of the people in the US at least. But for right now, I just am not eating much.
Sunday, November 8, 2009
Finding a surgeon
How do you figure out which doctors to trust? It seems I need a whole team of doctors now. I need a surgeon, an oncologist, a radiation oncologist (who knew they were different?), a plastic surgeon (probably). Where do I start?
I talk to family and friends, who give me names. Two surgeons names kept popping up: Lori Hansen, and David P Winchester (and everyone said there are two David Winchesters, you want the father). I have been given their names through three channels at least. Lori Hansen is the senior surgeon at Lynn Sage Breast Center at Northwestern. David Winchester is the same at Evanston Hospital. One oncologist name popped up twice Dr. Gradishar at Northwestern. I need still need to find plastic surgeons. I read that you are supposed to talk to them before surgery.
I make appointments and ask questions. Who is charge? Who takes the lead in directing my care and decisions. My family friend (ok, practically my sister who is a doctor and knows this stuff) says the oncologist but I book an appointment with the oncologist and they don't even want to see me until 2 weeks after surgery. I hope that there is someone to guide me through this process.
Everyone is very nice. I have started questioning everyone on the phone. Medical records personnel, pathology personnel, appointment setting personnel, even the Humana person I wait on hold for. I keep asking, "how does this work? What happens on this appointment? How long does this take? What is the procedure for getting this? When does the doctor usually do surgery?"
I haven't met any of them yet. My surgical appointments start November 20th. Ken and I will go and try to figure out who to trust.
For now, Ken is awake, it is Sunday morning at 7 a.m., a beautiful clear blue sky, 53 degrees. We are going to go ride 25 miles down the lakefront. I love to ride in November in Chicago. There is something about the second hour, that smooth pedal stroke, riding in a big gear feeling like you are flying with the lake on one side and the gentle breeze.
I talk to family and friends, who give me names. Two surgeons names kept popping up: Lori Hansen, and David P Winchester (and everyone said there are two David Winchesters, you want the father). I have been given their names through three channels at least. Lori Hansen is the senior surgeon at Lynn Sage Breast Center at Northwestern. David Winchester is the same at Evanston Hospital. One oncologist name popped up twice Dr. Gradishar at Northwestern. I need still need to find plastic surgeons. I read that you are supposed to talk to them before surgery.
I make appointments and ask questions. Who is charge? Who takes the lead in directing my care and decisions. My family friend (ok, practically my sister who is a doctor and knows this stuff) says the oncologist but I book an appointment with the oncologist and they don't even want to see me until 2 weeks after surgery. I hope that there is someone to guide me through this process.
Everyone is very nice. I have started questioning everyone on the phone. Medical records personnel, pathology personnel, appointment setting personnel, even the Humana person I wait on hold for. I keep asking, "how does this work? What happens on this appointment? How long does this take? What is the procedure for getting this? When does the doctor usually do surgery?"
I haven't met any of them yet. My surgical appointments start November 20th. Ken and I will go and try to figure out who to trust.
For now, Ken is awake, it is Sunday morning at 7 a.m., a beautiful clear blue sky, 53 degrees. We are going to go ride 25 miles down the lakefront. I love to ride in November in Chicago. There is something about the second hour, that smooth pedal stroke, riding in a big gear feeling like you are flying with the lake on one side and the gentle breeze.
There goes that bike
We've been talking about new road bikes. Ken and I rode 1700+ miles this last summer.
200+ miles and five beautiful days on the Blue Ridge Trail in North Carolina. One day on this beautiful tree lined mountain road with no one but us around for miles, we were going uphill so fast that we felt like we were going downhill. I even loved the day that it rained so hard that water was sloshing back and forth in my shoes as I peddled. I had to stop and drain them and squeeze the water from my socks before we could go on. As my friend Jonathon says, "a bad day outside on the bike is better than any day indoors".
I just said a few weeks ago, we need a new trip to look forward to. I try to stay active; biking outside, spin class, yoga, weight lifting, elliptical (if there are no teachers I like). Five to ten hours a week. A trip motivates both Ken and I to keep at it. Keep healthy. The book, "Younger Next Year", changed our lives.
I'd started shopping the internet for trips for Christmas. Or Spring Break. I really want to go biking.
We'd agreed that when our house in Clarendon Hills sold we would buy new bikes. That happens next week.
When I told my friend and biking buddy Jonathon, he said, "there goes the new bikes." He is right. At least until the spring.
200+ miles and five beautiful days on the Blue Ridge Trail in North Carolina. One day on this beautiful tree lined mountain road with no one but us around for miles, we were going uphill so fast that we felt like we were going downhill. I even loved the day that it rained so hard that water was sloshing back and forth in my shoes as I peddled. I had to stop and drain them and squeeze the water from my socks before we could go on. As my friend Jonathon says, "a bad day outside on the bike is better than any day indoors".
I just said a few weeks ago, we need a new trip to look forward to. I try to stay active; biking outside, spin class, yoga, weight lifting, elliptical (if there are no teachers I like). Five to ten hours a week. A trip motivates both Ken and I to keep at it. Keep healthy. The book, "Younger Next Year", changed our lives.
I'd started shopping the internet for trips for Christmas. Or Spring Break. I really want to go biking.
We'd agreed that when our house in Clarendon Hills sold we would buy new bikes. That happens next week.
When I told my friend and biking buddy Jonathon, he said, "there goes the new bikes." He is right. At least until the spring.
Telling Adam
When my mother had breast cancer I was almost 30. My son is 16. I am still a huge daily force in his life (even if he would rather I wasn't). Looking out over the next few months none of us can see what it will be like.
His first question cuts right to the root of everything. He is wickedly smart. "Is it Fatal?" Ken has already been on the internet, researching. 98% of the people who have what I have live 20 years.
His first question cuts right to the root of everything. He is wickedly smart. "Is it Fatal?" Ken has already been on the internet, researching. 98% of the people who have what I have live 20 years.
The Call
Wednesday morning was tough. I couldn't really do anything. They said no shower for 24 hours post procedure and I wasn't going to work with no shower! So I worked from home. Did a conference call. Answered email. Reviewed reports. Answered some questions on what was happening from my senior managers. I have had a cold since the previous Friday. It gets worse.
My cell phone rings. It is a sales candidate that I have been recruiting for 4 years. We make plans for him to fly in on November 13th to interview. While I'm talking to him, the phone rings again. It is the Fellow. I wait silently for her to start.
"I have good news and bad news," she says. The mass is invasive ductal carcinoma in situ. Grade 2. The calcifications are ductal carcinoma in situ. Grade 1. I have to go sit at my computer so I can type what she is saying. My hands are shaking. She tells me grading is a pathology term, not the same as what most people talk about "stage". I won't know what stage until the surgeon does their work.
While I am typing Adam, my son, is calling on the other line. I can't talk. I am still listening. She says I have to get an MRI and a surgeon. She has spoken to my gyne and he has suggested one and it is the same one that they frequently suggest; Dr. Nora Hanson. She agrees to fax over the pathology report.
I call Ken. I never did figure out the good news was.
My cell phone rings. It is a sales candidate that I have been recruiting for 4 years. We make plans for him to fly in on November 13th to interview. While I'm talking to him, the phone rings again. It is the Fellow. I wait silently for her to start.
"I have good news and bad news," she says. The mass is invasive ductal carcinoma in situ. Grade 2. The calcifications are ductal carcinoma in situ. Grade 1. I have to go sit at my computer so I can type what she is saying. My hands are shaking. She tells me grading is a pathology term, not the same as what most people talk about "stage". I won't know what stage until the surgeon does their work.
While I am typing Adam, my son, is calling on the other line. I can't talk. I am still listening. She says I have to get an MRI and a surgeon. She has spoken to my gyne and he has suggested one and it is the same one that they frequently suggest; Dr. Nora Hanson. She agrees to fax over the pathology report.
I call Ken. I never did figure out the good news was.
Saturday, November 7, 2009
Biopsies: Oh, how naive I was
I am optimistic. I am sure everything will be fine. I am not saying I don't think I have cancer. I do. I am still sure that everything will be fine. They said this biopsy procedure was no big deal, they just stick a few needles in take out some tissue and off it goes to the lab. They suggested I might want to take it easy for the rest of the day after the procedure but then I'll be fine.
I arrive Tuesday at 8:30 for a core biopsy with ultrasound and a sterotatic biopsy. What seems like 43 pages of permission and explanation later, and a few random tears while they are explaining everything that could possibly go wrong. Then I ask a question, "I have a session with my trainer scheduled Thursday at 6:45 a.m. to lift, I'll be all right by then right?"
Just a glance and then the tech says, "you aren't supposed to lift anything heavier than 5 pounds for the next 48 hours. You know you might be kind of sore. You are getting two biopsies."
The first biopsy is the ultrasound one for the mass. And I wish I understood the tool they used, it THUMPS. Really, they stick this needle and then count to three and then they push something and it thumps like three times. They do this six times. And even though my breast is numb, I think man, I'm gonna be sore and bruised. I make plans to cancel my trainer for Thursday.
Then we change rooms and we go to the stereotactic biopsy table, which is done while you are getting a mammogram because they can't "see" the calcifications. It is the strangest medical procedure I have ever had (well yet anyway). They lay you flat on a table with a hole where you breast goes through. Then they lift the table electronically so they can work under you. Then they poke and pull the breast into the right place, numb it again, push the mammogram into place, take some pictures and then poke you with some 6 pronged instrument. (ok, some Boynton childhood book keeps coming to mind, udderly ridiculous... I keep coming back to that mental image).
The strangest sensation was that one of the women was patting me on the back the whole time while they were working. I know she was being comforting but mostly I was thinking stop touching me, I just want to be done.
Then they are done and the doctors leave and the techs are there and I just hear them keep asking each other for more gauze, more gauze to stop the bleeding. They finally lower the table and as I step off I see a petri dish filled with my bloody tissue. My brain is screaming, THEY said it was only going to be a LITTLE. It looks like 1/4 of my breast.
The radiology fellow will call me with the results in 24 hours. I'm shaking so badly I can hardly get dressed. Ken is there waiting. He has been waiting for hours. I think this is worth another trip to Portillo's. This time I'm having a cheeseburger. I haven't had that in months. When I'm done home and resting I think I am going to throw up. Ok, so this food isn't making me feel better.
I am so sore for the next 24 hours I can't lift my arm. Ken has to help me dress. I start the entire series of West Wing again from the first year. I make it through 4 episodes.
I arrive Tuesday at 8:30 for a core biopsy with ultrasound and a sterotatic biopsy. What seems like 43 pages of permission and explanation later, and a few random tears while they are explaining everything that could possibly go wrong. Then I ask a question, "I have a session with my trainer scheduled Thursday at 6:45 a.m. to lift, I'll be all right by then right?"
Just a glance and then the tech says, "you aren't supposed to lift anything heavier than 5 pounds for the next 48 hours. You know you might be kind of sore. You are getting two biopsies."
The first biopsy is the ultrasound one for the mass. And I wish I understood the tool they used, it THUMPS. Really, they stick this needle and then count to three and then they push something and it thumps like three times. They do this six times. And even though my breast is numb, I think man, I'm gonna be sore and bruised. I make plans to cancel my trainer for Thursday.
Then we change rooms and we go to the stereotactic biopsy table, which is done while you are getting a mammogram because they can't "see" the calcifications. It is the strangest medical procedure I have ever had (well yet anyway). They lay you flat on a table with a hole where you breast goes through. Then they lift the table electronically so they can work under you. Then they poke and pull the breast into the right place, numb it again, push the mammogram into place, take some pictures and then poke you with some 6 pronged instrument. (ok, some Boynton childhood book keeps coming to mind, udderly ridiculous... I keep coming back to that mental image).
The strangest sensation was that one of the women was patting me on the back the whole time while they were working. I know she was being comforting but mostly I was thinking stop touching me, I just want to be done.
Then they are done and the doctors leave and the techs are there and I just hear them keep asking each other for more gauze, more gauze to stop the bleeding. They finally lower the table and as I step off I see a petri dish filled with my bloody tissue. My brain is screaming, THEY said it was only going to be a LITTLE. It looks like 1/4 of my breast.
The radiology fellow will call me with the results in 24 hours. I'm shaking so badly I can hardly get dressed. Ken is there waiting. He has been waiting for hours. I think this is worth another trip to Portillo's. This time I'm having a cheeseburger. I haven't had that in months. When I'm done home and resting I think I am going to throw up. Ok, so this food isn't making me feel better.
I am so sore for the next 24 hours I can't lift my arm. Ken has to help me dress. I start the entire series of West Wing again from the first year. I make it through 4 episodes.
Michele Ringwood Breast Cancer Blog
So, I had a diagnostic mammogram and what was supposed to be a 2 hour test turned into a 5 hour, "we just need a few more pictures." Followed up by an ultrasound done by two different people and a one on one with the radiologist where she tells me, "there are a couple of areas of concern." Then she said, you need two biopsies.
I started shaking and called Ken, he came and picked me up. He took me to Portillo's and I ate a chili dog, fries AND a Diet Coke. For that moment, I said the he*# with all this healthy eating.
They told me the core biopsies were no big deal. But they didn't spout all the usual statistics, they didn't say, "only 1 in 4 are cancer". They just kept saying they were concerned. Which just made me wonder, what do they see on that mammogram and ultrasound that they are not telling me? I am 47 years old.
I started shaking and called Ken, he came and picked me up. He took me to Portillo's and I ate a chili dog, fries AND a Diet Coke. For that moment, I said the he*# with all this healthy eating.
They told me the core biopsies were no big deal. But they didn't spout all the usual statistics, they didn't say, "only 1 in 4 are cancer". They just kept saying they were concerned. Which just made me wonder, what do they see on that mammogram and ultrasound that they are not telling me? I am 47 years old.
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