I didn't get up in time to run this morning, but it was an unusual day because I had time to run after work. Yea! I left the office at 4:30 and had about 90 minutes before a swim team event. I walked over to OSU's state of the art recreation/activity center to change clothes and then headed outside with my mp3 player, Garmin watch, and a bottle of water. It was HOT. The wind was blowing pretty hard and was a welcome companion since I was more concerned about being cooled down than slowed down.
I put in 3 miles. The first was slow and labored at 11:49. My calves are sore . . . yes, both of them now. I loosened up a little as I went along, though, running the other miles in 11:27 and 10:27. Unfortunately, I was still sore when I was done. I walked a little and stretched as I made my way back to the activity center to shower before heading across the sidewalk to the aquatic pavilion.
Tonight the kids were fitted for OSU age group swim team suits and we watched the OSU varsity swim team (men and women) swim against Kenyon. It's amazing to watch really good swimmers. I swam competitively in the summer from about age 10 to 16 and even qualified for Junior Olympics (our state meet) once. However, the kids nowadays are in a TOTALLY different league. My 11 year old already swims every stroke better than I ever did, as do all of her swimmer friends. My 8 year old is very impressive, too, especially in back and free. Even his butterfly is better than mine.
My favorite and fastest stroke was breast stroke (yes, another ironic thing).
I had lunch with two former colleagues who are good friends. It was great to see them again and check in. We talked a lot about my breast cancer diagnosis; the great news that it was caught early and the sad news that I have to lose both breasts anyway. We also caught up on work and personal things. Thanks for a great lunch, Whitney and Andy!
My Medical Oncologist consultation appointment is now scheduled, so things continue to move along. I wanted to see her before the operation just to get an idea of what I might have in store afterward. I know she can't tell me anything certain until they have the results of my post-surgery tests, however. Still, I'd like to know under what conditions I may need to take tamoxofin or get radiation and/or chemo. I'm also planning to ask about post-op treatment differences if I choose the lumpectomy over the bilateral mastectomy even though I'm almost 100% sure I'm going with the latter.
I think Steverunner mentioned me in his podcast posted today because I saw my blog address posted in his show notes on his web site. I haven't listened to the episode because I want to put it on my mp3 player and take it on a run. You can listen to it directly by clicking here or you can go to his web site and download the episode titled Fdip211: Gifts, Gadgets and Gizmos for Runners. Although I haven't listened to it yet, I would guess his mention of my blog will be toward the end of the show when he talks about emails he receives from fellow runners. Today, I listened to his episode #206. To learn about other favorite podcasts, check out my submission called Ran 5! Listening to Podcasts.
Oh babbling blog, motivate me to run and improve myself. Stamp out the demons of inactivity and negative thoughts. Give me strength to recover from breast cancer. And connect me with family and friends who I love.
Friday, October 30, 2009
Thursday, October 29, 2009
Trick or Treat!
I didn't run today. As predicted, I have a sore calf muscle. Luckily, it's just the left one and I'm hoping it won't turn chronic. I'd hate to have to stop running before November 23 when I will take a forced hiatus for a month or more.
A couple of days ago, I sent an email to Steverunner to thank him for his podcast and for inspiring me to do this blog and to reach out to others. I know he gets a huge volume of email, so I was suprised when he responded. He may mention my note and blog address on a podcast episode soon, so if the # of followers spikes, you'll know why.
Just a few updates on my quest to become cancer-free: I picked up my "films" from the second opinion clinic today and have them at home. The nurse practitioner in my surgeon's office is trying to get me an appointment with a medical oncologist so I can learn more about my options for treatment post-operation. That's all the news on that front. I feel healthy and full of energy right now, so it seems strange to be able to forecast that I will not be feeling so great in less than a month.
Tonight is Beggar's Night (Trick or Treat) and so I'm about ready to order pizza and get my kids ready to wreak havoc on the neighborhood. My oldest has a squaw costume and my youngest is some sort of ghoul. I usually put on my graduation gown and try to look like a Hogwart's teacher if I get time to throw on my costume before kids start arriving.
We're hosting a little pizza party with our neighbors before the kids go out for Trick or Treat, so it's about to get really busy around here!
A couple of days ago, I sent an email to Steverunner to thank him for his podcast and for inspiring me to do this blog and to reach out to others. I know he gets a huge volume of email, so I was suprised when he responded. He may mention my note and blog address on a podcast episode soon, so if the # of followers spikes, you'll know why.
Just a few updates on my quest to become cancer-free: I picked up my "films" from the second opinion clinic today and have them at home. The nurse practitioner in my surgeon's office is trying to get me an appointment with a medical oncologist so I can learn more about my options for treatment post-operation. That's all the news on that front. I feel healthy and full of energy right now, so it seems strange to be able to forecast that I will not be feeling so great in less than a month.
Tonight is Beggar's Night (Trick or Treat) and so I'm about ready to order pizza and get my kids ready to wreak havoc on the neighborhood. My oldest has a squaw costume and my youngest is some sort of ghoul. I usually put on my graduation gown and try to look like a Hogwart's teacher if I get time to throw on my costume before kids start arriving.
We're hosting a little pizza party with our neighbors before the kids go out for Trick or Treat, so it's about to get really busy around here!
Wednesday, October 28, 2009
Ran again - and more support
I broke my . . . rule? guideline? trend? . . . and ran two days in a row. And I chose to do this depite having tight calves which I know is a big yellow WARNING sign for me that I need to take it easy or get chronic running pain. Oh well, it was a good morning to run and I had time. So I ran because I could. And because I wanted to.
Like yesterday, I just headed out with no Garmin or watch, put music on my Sanza, and ran an easy 2 miles. I think I was a little faster today, but I have no idea if that's true. It felt like I ran the second mile at about a 10 minute mile pace. I don't want to know if I was slower, though. I would rather delude myself and feel pretty good about getting out there.
Today I took my parents to the airport and that's always sad. I love having them around and miss them when they leave. They will be coming back soon though since they will be here for my surgery. I think they come the Saturday before my November 23 surgery date.
Speaking of surgery dates, Beth at "it's not cancer but" is having her surgery sooner than mine. She has 2 weeks and 2 days before her big day. I just wrote a comment to her blog post called countdown.
I also talked with another survivor today. Actually, I met her and her 16 year old daughter for lunch. It was nice to have a face-to-face conversation. Everyone else I've talked with has been over the phone or internet. She encouraged me to talk with the medical oncologist while I'm in the holding pattern waiting for surgery. I thought that was a good idea, so I sent an email to my surgeon's nurse practitioner to try to get that appointment. Tracy was headed to talk to her daughter's biology class about breast cancer, so she was all decked out in her pink breast cancer gear including tshirt, watch, cap, etc.
Before I sign off for the night, I want to mention a couple of other ways I'm getting support through this tough time:
Like yesterday, I just headed out with no Garmin or watch, put music on my Sanza, and ran an easy 2 miles. I think I was a little faster today, but I have no idea if that's true. It felt like I ran the second mile at about a 10 minute mile pace. I don't want to know if I was slower, though. I would rather delude myself and feel pretty good about getting out there.
Today I took my parents to the airport and that's always sad. I love having them around and miss them when they leave. They will be coming back soon though since they will be here for my surgery. I think they come the Saturday before my November 23 surgery date.
Speaking of surgery dates, Beth at "it's not cancer but" is having her surgery sooner than mine. She has 2 weeks and 2 days before her big day. I just wrote a comment to her blog post called countdown.
I also talked with another survivor today. Actually, I met her and her 16 year old daughter for lunch. It was nice to have a face-to-face conversation. Everyone else I've talked with has been over the phone or internet. She encouraged me to talk with the medical oncologist while I'm in the holding pattern waiting for surgery. I thought that was a good idea, so I sent an email to my surgeon's nurse practitioner to try to get that appointment. Tracy was headed to talk to her daughter's biology class about breast cancer, so she was all decked out in her pink breast cancer gear including tshirt, watch, cap, etc.
Before I sign off for the night, I want to mention a couple of other ways I'm getting support through this tough time:
- My grandmother in Nebraska bought me a new "lounging around" outfit that I can wear while recovering. The top zips up and will be great for when I have to deal with dressings and drains. Thanks, Grandma!
- Ken's cousin sent me a book. My mom and I are using it to learn about all kinds of things that are to come. Thanks, Wendy!
- Many special friends and family members regularly read the blog, stop in to see me, write encouraging emails, add blog comments, send cards, schedule lunch dates, or call to just check in. Thanks to all of you who have helped me realize I'm not in this alone.
- My parents and Ken's parents have been very supportive and helpful in counseling, researching, and offering help and encouragement. Most recently, Ken's parents offered to watch the kids while we have a small get-a-way before surgery. That will be very nice.
- And, of course, Ken has been amazing through this all. Those of you who know him are not surprised in the least. He has been doing more than his share of cooking, cleaning, homework, etc. and he is so positive and encouraging through this all. His unrelenting mission is to ensure I internalize the fact that I will be the same person after surgery as before and that no cancer surgeries or treatments will make me less attractive or less of a woman. He is really incredible. Thank you, Ken.
Tuesday, October 27, 2009
Support
I got up late today but decided to do a quick run in the morning anyway. It was gorgous! The temperature was about 40 degrees F with little wind. It was dark when I went out but dawn by the time I was done. Unfortunately, I didn't have much time so I was only able to put in 2 miles. I didn't take my Garmin or watch with me, so I have no idea of the pace. It felt like the first mile was slow but the second mile I was clipping along a bit more, not pushing it, but probably at a comfortable 10:45 or 11 minute pace.
Today a friend and colleague at work offered to coordinate dinner meals for us after my surgery. Thanks, Eunice! She proposed that colleagues will sign up to bring dinner on a given day so we won't have days wtih two dinners or days dinner-free. She's going to see to it that we have a whole work week of meals without worry. Since Ken and I work in the same office, he can receive the dishes at work and bring them home. It's brilliant!
I'll have lots of support the week of surgery (Thanksgiving week) since my parents will be here and Ken's parents are coming for some of that week, too. Therefore, Eunice and I decided to have her dinner support begin the week after Thanksgiving (November 30). The doctors say I'll be hunching over to protect my chest for about two weeks and I won't want to use my arms much, so dinners the second week will be a great help.
I'm so fortunate to be working in an environment where my boss and colleagues are caring, supportive, and value flexible working arrangements. I also have very good benefits (including sick leave) and access to excellent health facilities and doctors. Since I'm an HR technology professional, I'm sure you think this is a commercial for the benefits of working at OSU . . . okay, so maybe it is. But seriously, nothing makes a person realize their blessings like getting thrown into a situation like a health crisis.
Today a friend and colleague at work offered to coordinate dinner meals for us after my surgery. Thanks, Eunice! She proposed that colleagues will sign up to bring dinner on a given day so we won't have days wtih two dinners or days dinner-free. She's going to see to it that we have a whole work week of meals without worry. Since Ken and I work in the same office, he can receive the dishes at work and bring them home. It's brilliant!
I'll have lots of support the week of surgery (Thanksgiving week) since my parents will be here and Ken's parents are coming for some of that week, too. Therefore, Eunice and I decided to have her dinner support begin the week after Thanksgiving (November 30). The doctors say I'll be hunching over to protect my chest for about two weeks and I won't want to use my arms much, so dinners the second week will be a great help.
I'm so fortunate to be working in an environment where my boss and colleagues are caring, supportive, and value flexible working arrangements. I also have very good benefits (including sick leave) and access to excellent health facilities and doctors. Since I'm an HR technology professional, I'm sure you think this is a commercial for the benefits of working at OSU . . . okay, so maybe it is. But seriously, nothing makes a person realize their blessings like getting thrown into a situation like a health crisis.
Sunday, October 25, 2009
Ran 5! Listening to Podcasts
I ran 5 miles today (11:12, 11:20, 11:21, 10:20, 10:46) and walked a quarter mile cool down. It was a beautiful night and just perfect to be out there. I intended to make this my long run for the week and after 3 miles, I knew I had at least one, probably two miles left in me. Actually, I probably could have gone even longer, but it was completely dark by then and my parents and family were waiting at home.
Don't you just love it when you feel good enough to run more miles than planned - especially when you have time to do so?
I listened to a podcast while pounding the pavement again. Today it was Steverunner's Phedippidations podcast #205. I listen to most of Steve's podcasts, though I'm chronically a bit behind. His current podcast is #209.
My friend and mentor, Jim calls me a Steverunner groupie, but I strongly deny such allegations. I even challenged Jim to create his own podcast so I can be a JimTriGuy groupie too. He'd be great at it, by the way. Jim's a great runner and very funny. Also, in my own defense, I'm not exclusive with the Steverunner show, I listen to other podcasts, too. However, when I tell you that Steve encourages new podcasters and promotes other blogs and podcasts on his show, you might start to agree with Jim's groupie assessment, so I really shouldn't have mentioned it.
In addition to Steverunner, I very highly recommend The Extra Mile Podcast. This show is created by putting together audio submissions by runners all over the world. Runners call in or send an audio file with a training update, inspirational story, or race report. It's great to hear so many different runners who are at very different places in their running and training. New runners are just as welcome as pros on that podcast and there really is something for everyone. I keep meaning to call in to the Extra Mile to give a report.
On occassion, I also listen to Zen and the Art of Triathlon and RunRunLive. I also plan to check out Running To Disney because I hear Gordon is smart and funny and Fitness Rocks because Dr Monte is an MD and a runner.
If you walk or run for exercise, check out runningpodcasts.org to find a podcast that really speaks to you. Then download it to your iPod or mp3 player (I use a Sanza clip) and hit the road. If running isn't your thing, search the web for a podcast related to one of your hobbies or work interests. A podcast is like talk / public radio, but with topics you select.
Don't you just love it when you feel good enough to run more miles than planned - especially when you have time to do so?
I listened to a podcast while pounding the pavement again. Today it was Steverunner's Phedippidations podcast #205. I listen to most of Steve's podcasts, though I'm chronically a bit behind. His current podcast is #209.
My friend and mentor, Jim calls me a Steverunner groupie, but I strongly deny such allegations. I even challenged Jim to create his own podcast so I can be a JimTriGuy groupie too. He'd be great at it, by the way. Jim's a great runner and very funny. Also, in my own defense, I'm not exclusive with the Steverunner show, I listen to other podcasts, too. However, when I tell you that Steve encourages new podcasters and promotes other blogs and podcasts on his show, you might start to agree with Jim's groupie assessment, so I really shouldn't have mentioned it.
In addition to Steverunner, I very highly recommend The Extra Mile Podcast. This show is created by putting together audio submissions by runners all over the world. Runners call in or send an audio file with a training update, inspirational story, or race report. It's great to hear so many different runners who are at very different places in their running and training. New runners are just as welcome as pros on that podcast and there really is something for everyone. I keep meaning to call in to the Extra Mile to give a report.
On occassion, I also listen to Zen and the Art of Triathlon and RunRunLive. I also plan to check out Running To Disney because I hear Gordon is smart and funny and Fitness Rocks because Dr Monte is an MD and a runner.
If you walk or run for exercise, check out runningpodcasts.org to find a podcast that really speaks to you. Then download it to your iPod or mp3 player (I use a Sanza clip) and hit the road. If running isn't your thing, search the web for a podcast related to one of your hobbies or work interests. A podcast is like talk / public radio, but with topics you select.
Saturday, October 24, 2009
Decisions
Lee Ann and Ken are asking me if I'm still up in the air about what to do. I was pretty sure I was opting for the mastectomies until the second opinion clinic created doubt for me again. That's why I went on a new research spree.
I think the second opinion clinic doctors were trying to tell me I still have a choice. They said since survival rates are the same with lumpectomy and mastectomy, it's just a matter of how much I would worry about getting cancer again and how I feel about losing my breasts.
If that's all I had to consider, it would be a no-brainer to keep my breasts. After a lumpectomy, I could go dive into my crazy schedule of work and home life and slip into denial quite easily.
Unfortunately, I don't think it's just about the worry. I think it's about being lucky to catch it this time and knowing that it's a strong possibility I won't be as lucky or have as many options next time.
The MRI is the best imaging device available and it can't find the cancer in me, though we know it's there. And we can't just do biopsies randomly every few months. Where would we look? Besides, biopsies are not as easy as you'd think, I am still a bit sore in that area when running and it's been a month since the biopsy.
So next time I get cancer, it's going to just hide in me and lurk and spread into the rest of my body because we don't know it's there. By the time it's caught, it's likely that I'll have symptoms and the cancer will have already spread to my lymph nodes and beyond. By then I will have no options. Mastectomies, chemo, and radition will all be required. Then I will truly be sick. My chances of surviving might still be over 50% but they won't be as close to 100% as they are now.
So I guess I am back to not having much of a choice. I guess I could get the lumpectomy now and wait to get the bilateral mastectomies later. That way, I'd have more time to prepare and make peace with it. But I really don't think that will ever come. I'll never be okay with giving up my breasts. So I'm not sure what I'd gain by deciding to do this in two different surgeries. I might be able to keep my breasts for a few more years, I guess. But it's a gamble to do so.
I know they are making advances in breast cancer treatment all the time, but I don't think I can wait for them to develop a better imaging tool or a thorough understanding of what makes LCIS turn into cancer (or even if it does). I have to make the decision with the information available now.
If anyone has any information available to help me, let me know. I guess the most important piece of information is how likely I would be to get breast cancer again if I get a lumpectomy now. The doctors can't answer that question. They just don't know. The best they can do is that I'll be 10x to 15x more likely to get breast cancer than someone who has not been diagnoised with LCIS.
I hope my daughter and her friends have better options available if they are ever in my shoes. To invest in their future, I'll continue to buy the products with the little pink ribbon, run the Race for the Cure, and try to raise money and awareness. If we all contribute to the cause, maybe their generation will have better options. I certainly hope so.
I think the second opinion clinic doctors were trying to tell me I still have a choice. They said since survival rates are the same with lumpectomy and mastectomy, it's just a matter of how much I would worry about getting cancer again and how I feel about losing my breasts.
If that's all I had to consider, it would be a no-brainer to keep my breasts. After a lumpectomy, I could go dive into my crazy schedule of work and home life and slip into denial quite easily.
Unfortunately, I don't think it's just about the worry. I think it's about being lucky to catch it this time and knowing that it's a strong possibility I won't be as lucky or have as many options next time.
The MRI is the best imaging device available and it can't find the cancer in me, though we know it's there. And we can't just do biopsies randomly every few months. Where would we look? Besides, biopsies are not as easy as you'd think, I am still a bit sore in that area when running and it's been a month since the biopsy.
So next time I get cancer, it's going to just hide in me and lurk and spread into the rest of my body because we don't know it's there. By the time it's caught, it's likely that I'll have symptoms and the cancer will have already spread to my lymph nodes and beyond. By then I will have no options. Mastectomies, chemo, and radition will all be required. Then I will truly be sick. My chances of surviving might still be over 50% but they won't be as close to 100% as they are now.
So I guess I am back to not having much of a choice. I guess I could get the lumpectomy now and wait to get the bilateral mastectomies later. That way, I'd have more time to prepare and make peace with it. But I really don't think that will ever come. I'll never be okay with giving up my breasts. So I'm not sure what I'd gain by deciding to do this in two different surgeries. I might be able to keep my breasts for a few more years, I guess. But it's a gamble to do so.
I know they are making advances in breast cancer treatment all the time, but I don't think I can wait for them to develop a better imaging tool or a thorough understanding of what makes LCIS turn into cancer (or even if it does). I have to make the decision with the information available now.
If anyone has any information available to help me, let me know. I guess the most important piece of information is how likely I would be to get breast cancer again if I get a lumpectomy now. The doctors can't answer that question. They just don't know. The best they can do is that I'll be 10x to 15x more likely to get breast cancer than someone who has not been diagnoised with LCIS.
I hope my daughter and her friends have better options available if they are ever in my shoes. To invest in their future, I'll continue to buy the products with the little pink ribbon, run the Race for the Cure, and try to raise money and awareness. If we all contribute to the cause, maybe their generation will have better options. I certainly hope so.
Friday, October 23, 2009
Surgical Oncologist re: Risk
I talked with my surgical oncologist again today. He called with the results of my MRI, which I already knew were clear. He wasn't surprised they were clear because ILC and LCIS rarely shows up in an MRI, which is why he didn't order an MRI before I requested one. I could have taken offense and assumed he was saying "I told you so, na na, na-na na," but I chose not to do that and to just agree he was right and ask more questions.
I told him I was doing research and asked him about the risk of developing cancer in the future if I get a lumpectomy. He talked about the "relative risk" which is different than the percent of likelihood. He said I have a relative risk of 10 to 15 times that of the general population. So I think that means I am at least 10 times more likely to have cancer again than Jane Doe has of getting it.
We also talked briefly about tamoxifin and he agreed the side effects are quite disruptive.
So I'm learning more and more. I don't like what I'm learning, of course. It's still very scary. But I need to know.
I told him I was doing research and asked him about the risk of developing cancer in the future if I get a lumpectomy. He talked about the "relative risk" which is different than the percent of likelihood. He said I have a relative risk of 10 to 15 times that of the general population. So I think that means I am at least 10 times more likely to have cancer again than Jane Doe has of getting it.
We also talked briefly about tamoxifin and he agreed the side effects are quite disruptive.
So I'm learning more and more. I don't like what I'm learning, of course. It's still very scary. But I need to know.
Research
Spent much of the day doing research.
Stanford says that with LCIS, both breasts are affected 30% of the time. Also, 25% of patients with LCIS will develop invasive breast cancer and this risk applies to both breasts regardless of whether just one has LCIS or not. So it really doesn't matter of LCIS is in the right breast or not, it is still at a higher risk. Also, this higher risk applies to both kinds of cancers, lobular and ductal.
The Mayo clinic says 10% to 20% lifetime risk of invasive in either breast. I wonder if that was above and beyond the already 12% chance any woman with breasts has to contract breast cancer.
Breastcancer.org says the lifetime risk is 30 to 40% for LCIS women and 12.5% for women without LCIS. They also list another estimate of 21% over the next 15 years. Taking the drug tamoxifen reduces that risk by 46%.
Network of Strength says 25% lifetime chance if have LCIS. They also say that 3 of 214 women developed breast cancer despite bilateral mastectomy because the doctors can't get all the cells.
I also read a 1% per year number somewhere and I think the second opinion surgeon said that too.
In addition, I ignored the advice of the second opinion nurses and read some discussion groups attached to credible sites. I like hearing the stories of others and I think I'm savvy enough to not fixate on one person's story and inappropriately apply it to me.
In hours of reading today, I have read about people who have chosen both options and are glad for their choices. I've also read about people who have gone through surgery 2 and 3 times. Some of them had lumpectomies and then mastectomies, some had multiple lumpectomies. In England, they almost never do mastectomies.
Some women who chose mastectomies were surprised to find more cancer in the breast tissue than advertised by the biopsy, MRI, and mammograms. Also, after prophylactic mastectomy (proactively taking the non-cancerous breast), several women reported cancers were found in the "good" breast though MRI did not show anything there.
I haven't found any hard numbers on people who have LCIS along with ILC. I am obviously one of the 25% of patients who developed an invasive cancer while having LCIS. Does that make me more likely to develop the ILC again if I just get the lumpectomy? And are the odds worse than 25% since I already had ILC? I would guess so. I think my surgeon was trying to get me to understand that on the horrible day when I learned the diagnosis.
I'm not one of those women who cares nothing for her breasts and who finds this to be a very easy decision. I know that many women feel that way and report that this decision was a no-brainer. I think most who write about it felt that way. A few reported agonizing about it though. I am obviously one who is having trouble with the decision.
I know these things:
1. I really don't want to take tamoxifen. It sounds like it as big a hit to "who I am" as a bilateral mastectomy would be and it requires 5 years of treatment and dealing with the common reactions which include hot flashes and irritability as well as many other things that sound terrible.
2. I really don't want to do chemo. Ever! Of course, I will do so if I have to, but I dread it as much as a bilateral mastectomy. Maybe if I learned more about chemo I wouldn't be so terrified of it. If I get the lumpectomy, the next time I get cancer it may not be caught early enough and I may need to have chemo.
3. I expect reconstruction will be traumatic for me. It will be a year of reconstruction time (surgery, expanders for 3+ months, surgery again, wait 3 months, nipples added, etc.). And after all that, the results will not be anywhere near what my breasts look or feel like now. Frankenstein scars and disfigured nipples and areolas are what I believe are in my future. This is probably what I cry about most right now.
4. I may be naive, but I don't really believe the breast cancer will be fatal for me. I believe I'm lucky that it was caught early. I'm focused more on what it will be like to live with the consequences of this disease, not whether I will live. I'm grateful that is the case, of course. After all my research, I'm no longer crying because I won't be here for my children as they grow up or because I can't grow old with my husband. I truly believe I will be here for them all.
Stanford says that with LCIS, both breasts are affected 30% of the time. Also, 25% of patients with LCIS will develop invasive breast cancer and this risk applies to both breasts regardless of whether just one has LCIS or not. So it really doesn't matter of LCIS is in the right breast or not, it is still at a higher risk. Also, this higher risk applies to both kinds of cancers, lobular and ductal.
The Mayo clinic says 10% to 20% lifetime risk of invasive in either breast. I wonder if that was above and beyond the already 12% chance any woman with breasts has to contract breast cancer.
Breastcancer.org says the lifetime risk is 30 to 40% for LCIS women and 12.5% for women without LCIS. They also list another estimate of 21% over the next 15 years. Taking the drug tamoxifen reduces that risk by 46%.
Network of Strength says 25% lifetime chance if have LCIS. They also say that 3 of 214 women developed breast cancer despite bilateral mastectomy because the doctors can't get all the cells.
I also read a 1% per year number somewhere and I think the second opinion surgeon said that too.
In addition, I ignored the advice of the second opinion nurses and read some discussion groups attached to credible sites. I like hearing the stories of others and I think I'm savvy enough to not fixate on one person's story and inappropriately apply it to me.
In hours of reading today, I have read about people who have chosen both options and are glad for their choices. I've also read about people who have gone through surgery 2 and 3 times. Some of them had lumpectomies and then mastectomies, some had multiple lumpectomies. In England, they almost never do mastectomies.
Some women who chose mastectomies were surprised to find more cancer in the breast tissue than advertised by the biopsy, MRI, and mammograms. Also, after prophylactic mastectomy (proactively taking the non-cancerous breast), several women reported cancers were found in the "good" breast though MRI did not show anything there.
I haven't found any hard numbers on people who have LCIS along with ILC. I am obviously one of the 25% of patients who developed an invasive cancer while having LCIS. Does that make me more likely to develop the ILC again if I just get the lumpectomy? And are the odds worse than 25% since I already had ILC? I would guess so. I think my surgeon was trying to get me to understand that on the horrible day when I learned the diagnosis.
I'm not one of those women who cares nothing for her breasts and who finds this to be a very easy decision. I know that many women feel that way and report that this decision was a no-brainer. I think most who write about it felt that way. A few reported agonizing about it though. I am obviously one who is having trouble with the decision.
I know these things:
1. I really don't want to take tamoxifen. It sounds like it as big a hit to "who I am" as a bilateral mastectomy would be and it requires 5 years of treatment and dealing with the common reactions which include hot flashes and irritability as well as many other things that sound terrible.
2. I really don't want to do chemo. Ever! Of course, I will do so if I have to, but I dread it as much as a bilateral mastectomy. Maybe if I learned more about chemo I wouldn't be so terrified of it. If I get the lumpectomy, the next time I get cancer it may not be caught early enough and I may need to have chemo.
3. I expect reconstruction will be traumatic for me. It will be a year of reconstruction time (surgery, expanders for 3+ months, surgery again, wait 3 months, nipples added, etc.). And after all that, the results will not be anywhere near what my breasts look or feel like now. Frankenstein scars and disfigured nipples and areolas are what I believe are in my future. This is probably what I cry about most right now.
4. I may be naive, but I don't really believe the breast cancer will be fatal for me. I believe I'm lucky that it was caught early. I'm focused more on what it will be like to live with the consequences of this disease, not whether I will live. I'm grateful that is the case, of course. After all my research, I'm no longer crying because I won't be here for my children as they grow up or because I can't grow old with my husband. I truly believe I will be here for them all.
Maintenance Miles
Ran a mile and ran/walked another mile today. Today was one of those strange running days that makes little sense. I got plenty of sleep last night. My fuel should be okay, too; pasta last night and an egg and whole grain english muffin for breakfast. It wasn't a beautiful day but I have friends who would say it was perfect for running; upper 50's, overcast, spitting rain, and a little windy.
Despite good conditions, I just couldn't get into running. I ran the first mile at 10:37 and then started to run a second mile but got tired. I ended up walking some of the last half mile and completed it in 12:23. Then I hung it up, put away the trash cans so they wouldn't get more rain in them, and came inside.
Given my emotional day on Wednesday, you'd think I would have had a poor running day then and a better running day today. Strange. Oh well, I guess I'll call this a "maintenance" running day. Not that impressive, but I was out there a little. I have to think my whimpy running today will help me be able to run better on a future day, maybe Saturday or Sunday.
I listened to Steverunner again today during the run. I'm about a month behind on his podcasts, so this one was his episode on Team Sweat (teamsweat.org). I listened to half of it on Tues and half today. Steve interviewed a guy who has a campaign against Nike because of terrible labor practices in developing countries. If you're interested, check it out at http://media.libsyn.com/media/steverunner/Fdip204.mp3
Despite good conditions, I just couldn't get into running. I ran the first mile at 10:37 and then started to run a second mile but got tired. I ended up walking some of the last half mile and completed it in 12:23. Then I hung it up, put away the trash cans so they wouldn't get more rain in them, and came inside.
Given my emotional day on Wednesday, you'd think I would have had a poor running day then and a better running day today. Strange. Oh well, I guess I'll call this a "maintenance" running day. Not that impressive, but I was out there a little. I have to think my whimpy running today will help me be able to run better on a future day, maybe Saturday or Sunday.
I listened to Steverunner again today during the run. I'm about a month behind on his podcasts, so this one was his episode on Team Sweat (teamsweat.org). I listened to half of it on Tues and half today. Steve interviewed a guy who has a campaign against Nike because of terrible labor practices in developing countries. If you're interested, check it out at http://media.libsyn.com/media/steverunner/Fdip204.mp3
Thursday, October 22, 2009
Conversations and welcoming home Ken
I started the day with a phone call with my mother-in-law who is VERY knowledgable about surgery issues, as she was a nurse for over 30 years and a surgical nurse for most of that time. She called one of her trusted surgeon friends and got some insight about my lumpectomy vs. mastectomy dilemma. He had similar ideas to what the second opinion clinic offered yesterday. I really appreciate that Jan called her colleague and did some research for me on this. Thanks, Jan!
Today I also talked with my friend and colleague, Tom. He recently had achilles surgery and has been out of the loop on my cancer situation. Tom is a major runner, actually an IronMan since he's completed at least one full Ironman triatholon. He's on the road to recovery from a nagging running injury. At least I assume it was caused by his running craziness.
Tom and Jim are friends of mine who have coached me through my major running victories: several 5Ks and a half marathon. Both of them are very supportive and never treat my whimpy running like it is way beneath them, though I know it is. I thank them both for humoring me and for being inspiring and sources of valuable advice and support.
Anyway, it was good to talk with Tom and he was once again very supportive in my newest challenge. I'm blessed with many friends and family who are supportive and want to help, too. As Tom said today, he has no idea what he would do in my shoes, but he assured me he would join my other supporters in whatever I decided to do. Thanks, Tom!
I also got some resources from another colleague, Karen. I intend to do some more research tomorrow, so it is good to have ideas for where to look next and how to proceed. I know I'll eventually just have to decide - actually, that will need to happen soon.
If you know anyone with LCIS/ILC who chose a lumpectomy, let me know. However, I doubt there are too many of us out there. I think only about 8% of breast cancers are lobular and the lumpectomy is a more common choice for the ductal cancers.
No formal exercise today, just a regular work day and then I picked my husband up from the airport. It's VERY good to have him home, though I'm glad he was able to have success, recognition, and fun at the conference. He's tired tonight though, so I'll probably forego the conversations about cancer until tomorrow. We all certainly deserve a break from this!
Today I also talked with my friend and colleague, Tom. He recently had achilles surgery and has been out of the loop on my cancer situation. Tom is a major runner, actually an IronMan since he's completed at least one full Ironman triatholon. He's on the road to recovery from a nagging running injury. At least I assume it was caused by his running craziness.
Tom and Jim are friends of mine who have coached me through my major running victories: several 5Ks and a half marathon. Both of them are very supportive and never treat my whimpy running like it is way beneath them, though I know it is. I thank them both for humoring me and for being inspiring and sources of valuable advice and support.
Anyway, it was good to talk with Tom and he was once again very supportive in my newest challenge. I'm blessed with many friends and family who are supportive and want to help, too. As Tom said today, he has no idea what he would do in my shoes, but he assured me he would join my other supporters in whatever I decided to do. Thanks, Tom!
I also got some resources from another colleague, Karen. I intend to do some more research tomorrow, so it is good to have ideas for where to look next and how to proceed. I know I'll eventually just have to decide - actually, that will need to happen soon.
If you know anyone with LCIS/ILC who chose a lumpectomy, let me know. However, I doubt there are too many of us out there. I think only about 8% of breast cancers are lobular and the lumpectomy is a more common choice for the ductal cancers.
No formal exercise today, just a regular work day and then I picked my husband up from the airport. It's VERY good to have him home, though I'm glad he was able to have success, recognition, and fun at the conference. He's tired tonight though, so I'll probably forego the conversations about cancer until tomorrow. We all certainly deserve a break from this!
Wednesday, October 21, 2009
Running as Medicine
I'm feeling much better now. I talked with my friend, Jen, and she convinced me to try heading outside to feel better. So I ate a little and then went out for a run. I ran 3 miles at 11:06, 11:20, and 11:06.
I think part of my problem was that I wasn't breathing correctly all day. Stress will do that, I hear. We tend to hold our breath which is the exact opposite of what we should do to relax.
Anyway, I'm feeling better. Mom made corned beef brisket, noodles, and raw veggies for dinner.
One more story: I made the plastic surgeon laugh today by suggesting I could purposely gain weight to have more tissue (aka fat) for the reconstructive surgery option that uses a flap of skin from the stomach to make the breasts. He laughed and said he had never heard anyone consider that option. No doctor would ever suggest someone become overweight on purpose because the other health risks associated with weight gain, of course.
Well, my son is kicking me off the computer so he can do his homework. Have a great night.
I think part of my problem was that I wasn't breathing correctly all day. Stress will do that, I hear. We tend to hold our breath which is the exact opposite of what we should do to relax.
Anyway, I'm feeling better. Mom made corned beef brisket, noodles, and raw veggies for dinner.
One more story: I made the plastic surgeon laugh today by suggesting I could purposely gain weight to have more tissue (aka fat) for the reconstructive surgery option that uses a flap of skin from the stomach to make the breasts. He laughed and said he had never heard anyone consider that option. No doctor would ever suggest someone become overweight on purpose because the other health risks associated with weight gain, of course.
Well, my son is kicking me off the computer so he can do his homework. Have a great night.
Second Opinion
Had the second opinion clinic today. The service they provide and the people there were absolutely fantastic. I was so impressed with everyone.
As for the results, this group said the bilateral mastectomy is "not unreasonable." They seemed to be leaning more toward the lumpectomy with radiation and tamoxifin (a pill often used to reduce occurence of breast cancer in high risk women), though. They thought the mastectomy with reconstruction is quite an ordeal and may not be worth it, but only I can decide what is best for me. They thought it was more about aesthetics, body image, and whether I could deal with the worry of recurrance. Would I feel more secure having my breasts gone? I don't know.
Good news: The MRI showed nothing at all. No invasive cancer in either breast. I wondered aloud if the biopsy actually got all the invasive cancer out and the doctor seemed to think that was a possibility, though the only way to know is surgery and then checking the margins. Evidently, the LCIS is still there, but not viewable on the MRI.
More good news: They called this level 1 cancer, meaning the cells don't look that different than regular breast cells.
Even more good news: This group agreed that it was caught really early and I am very low risk for the cancer to move elsewhere in my body.
I guess the tough thing is that I'm now very confused again. I'm not sure what to do. Chance of survival is the same with both surgeries (very, very high). Chance of recurrence according to the second opinion group today was about the same with either surgery (lump or mastectomy). What I heard from my doctor is that the chance of recurrence is higher with lumpectomy.
I'm totally fried now. Major headache. Tired. Even a bit sick to my stomach. Will probably take a nap, if I can. My daughter has lots of homework though. I should try to be available to help with that, although my mom is around too. My dad will probably take my son to baseball.
Ken is still out of town at a conference. Yesterday he and his boss got an award and had a great presentation of their analytics product. It was fun to hear him so jazzed about it. I'm glad he's getting a little time away from all this icky stuff here. Icky is of course the medical term to describe the physical and psychological aspects of dealing with cancer.
It's gorgeous outside. I should be running. I wonder if I'd feel better by doing so or if it would wipe me out further and wear down my resistance to illness. So many unknowns. I don't even know what's for dinner. Not Mexican, though. Stomach is too iffy for that.
As for the results, this group said the bilateral mastectomy is "not unreasonable." They seemed to be leaning more toward the lumpectomy with radiation and tamoxifin (a pill often used to reduce occurence of breast cancer in high risk women), though. They thought the mastectomy with reconstruction is quite an ordeal and may not be worth it, but only I can decide what is best for me. They thought it was more about aesthetics, body image, and whether I could deal with the worry of recurrance. Would I feel more secure having my breasts gone? I don't know.
Good news: The MRI showed nothing at all. No invasive cancer in either breast. I wondered aloud if the biopsy actually got all the invasive cancer out and the doctor seemed to think that was a possibility, though the only way to know is surgery and then checking the margins. Evidently, the LCIS is still there, but not viewable on the MRI.
More good news: They called this level 1 cancer, meaning the cells don't look that different than regular breast cells.
Even more good news: This group agreed that it was caught really early and I am very low risk for the cancer to move elsewhere in my body.
I guess the tough thing is that I'm now very confused again. I'm not sure what to do. Chance of survival is the same with both surgeries (very, very high). Chance of recurrence according to the second opinion group today was about the same with either surgery (lump or mastectomy). What I heard from my doctor is that the chance of recurrence is higher with lumpectomy.
I'm totally fried now. Major headache. Tired. Even a bit sick to my stomach. Will probably take a nap, if I can. My daughter has lots of homework though. I should try to be available to help with that, although my mom is around too. My dad will probably take my son to baseball.
Ken is still out of town at a conference. Yesterday he and his boss got an award and had a great presentation of their analytics product. It was fun to hear him so jazzed about it. I'm glad he's getting a little time away from all this icky stuff here. Icky is of course the medical term to describe the physical and psychological aspects of dealing with cancer.
It's gorgeous outside. I should be running. I wonder if I'd feel better by doing so or if it would wipe me out further and wear down my resistance to illness. So many unknowns. I don't even know what's for dinner. Not Mexican, though. Stomach is too iffy for that.
Monday, October 19, 2009
Strong running day but MRI whimp
The day started out pretty well. I worked from home and got quite a bit of work done. I also talked with a friend at work who was able to give me information about her experience with cancer and that was really helpful.
I had to leave at about 3:30pm to drive 45 minutes to get my "films" to take to the second opinion clinic on Wednesday. I got there quicker than expected and had finished picking up my films by 4:30.
I knew I had to hang around there for 2 hours before my MRI appointment, so I brought my running stuff. I changed and headed out to run and it was a beautiful day! The run went really well, too. I ran 3 miles at 11:04, 10:48, and 10:26 and then walked about a half mile. I was feeling really good.
Then . . . insert dramatic villian music here . . . I went to get the MRI. Don't let anyone tell you an MRI is no big deal, well, at least not a breast MRI. First, I was unaware that I had to have an IV with meds. I hate needles, but I can handle that. The needle was child's play compared to the rest. I was in there for over an hour face-down on the machine with my arms over my head. The worst thing was that my shoulders were cramping for the last half of the procedure and I had to will them to stay still and force relaxing.
I'm concerned about the MRI taking longer than advertised. I don't know if they saw something and took extra time to get a closer look or if I moved and messed up the images (though I was working really hard to not move or hardly breathe for over an hour).
Afterward, I was dizzy and had to sit down for quite awhile. It's over two hours later and I'm still not feeling quite right. My stomach is a bit annoyed too.
My parents were troopers and took care of the kids tonight. Mondays are the busiest day for us for running around, too. The kids go straight from the bus to piano to church school and then to volleyball. After volleyball, they finally get home home for dinner and homework. A crazy day! Tomorrow will be challenging for my parents too because they will be driving the kids to swim team practice which is about 40 minutes away through the city. They will be fine, though. I'm so glad they can be here to help!
Well, the day is done now and I'm tired. Time for bed. At least the MRI is done, though I'm still pretty nervous about the results. I might find out something about it on Wednesday at the second opinion clinic because I was able to get a copy of the disks (it takes two disks to save all those 3,000 images). If I don't learn the results on Wed, I will probably have to wait until Friday when my doctor is supposed to call me. Oh, please let it be good news. Or at least neutral news.
Good night, my friends.
- Kelly
I had to leave at about 3:30pm to drive 45 minutes to get my "films" to take to the second opinion clinic on Wednesday. I got there quicker than expected and had finished picking up my films by 4:30.
I knew I had to hang around there for 2 hours before my MRI appointment, so I brought my running stuff. I changed and headed out to run and it was a beautiful day! The run went really well, too. I ran 3 miles at 11:04, 10:48, and 10:26 and then walked about a half mile. I was feeling really good.
Then . . . insert dramatic villian music here . . . I went to get the MRI. Don't let anyone tell you an MRI is no big deal, well, at least not a breast MRI. First, I was unaware that I had to have an IV with meds. I hate needles, but I can handle that. The needle was child's play compared to the rest. I was in there for over an hour face-down on the machine with my arms over my head. The worst thing was that my shoulders were cramping for the last half of the procedure and I had to will them to stay still and force relaxing.
I'm concerned about the MRI taking longer than advertised. I don't know if they saw something and took extra time to get a closer look or if I moved and messed up the images (though I was working really hard to not move or hardly breathe for over an hour).
Afterward, I was dizzy and had to sit down for quite awhile. It's over two hours later and I'm still not feeling quite right. My stomach is a bit annoyed too.
My parents were troopers and took care of the kids tonight. Mondays are the busiest day for us for running around, too. The kids go straight from the bus to piano to church school and then to volleyball. After volleyball, they finally get home home for dinner and homework. A crazy day! Tomorrow will be challenging for my parents too because they will be driving the kids to swim team practice which is about 40 minutes away through the city. They will be fine, though. I'm so glad they can be here to help!
Well, the day is done now and I'm tired. Time for bed. At least the MRI is done, though I'm still pretty nervous about the results. I might find out something about it on Wednesday at the second opinion clinic because I was able to get a copy of the disks (it takes two disks to save all those 3,000 images). If I don't learn the results on Wed, I will probably have to wait until Friday when my doctor is supposed to call me. Oh, please let it be good news. Or at least neutral news.
Good night, my friends.
- Kelly
Saturday, October 17, 2009
Great run!, some down times, and basement renovations
Went out this morning and traversed 4.5 miles. I actually ran most of it, but walked some of the last 1.5. The Garmin says the miles were 11:32, 11:19, 11:18, 13:22 (walked some of this one), and then 8:37 for the last half.
Had a "lower" mood evening last night. I'm generally doing pretty well, but there are times when I can lose motivation and get blue. Last night I exchanged emails with some friends about being betrayed by our bodies and the effect of body image on everything. Even just a few pounds can have an impact. The results of my surgery will be a bit more dramatic than a few extra pounds and I'm concerned about being able to pull out of it.
I have choices with this, I guess. I can be the victim of this thing that's out of my control and I can let the results of my surgery obliterate my motivation and self-confidence or I can find a way to focus on other positive things and minimize the impact. I know that sounds easy enough. And I have control over the choice. But it really is tougher than it sounds. At least for me. Some days I think I can do it. No problem. Other days, it seems overwhelming and why bother since I have no control over the outcomes of this surgery and cancer.
Today I'm on the up swing side of it all. I ran about 4 miles and walked about another half. I listened to the other runners on The Extra Mile Podcast and I felt motivated and rejuvinated in my personal power and hope for the future.
Also today my parents are coming to visit for about 10 days. That will be great! They are a wonderful source of support for me and mom will go to the second opinion clinic with me because Ken will be at a conference.
Also, we'll work on our perpetual project to finish the basement and it will be wonderful to continue creating a new oasis down there. We've got a ranch with a walk-out basement. The upstairs is 3 bedroom, 2 bath. The basement has 2 additional bedrooms, a full bath, storage rooms, a very large workshop, a kitchenette, and a family room. The kitchenette has an oven, microwave, dishwasher and full fridge. The Ikea cabinets are fabulous, as is the little granite countertop. This trip, we'll probably work on the window seat which consists of floor to ceiling Ikea cabinets flanking a large window (5'x 6') and matching cabinets underneath the window with the cushion area on top. Will be great!
Maybe I'll figure out how to post some pics of our progress.
A big thank you goes out to my friends (and Ken) who took the brunt of the "down" mood last night and were supportive and understanding as always. I know I'll continue to have some of that going on, but I hope it wanes as my positive motivation drives it out. Have a great weekend, everyone.
Had a "lower" mood evening last night. I'm generally doing pretty well, but there are times when I can lose motivation and get blue. Last night I exchanged emails with some friends about being betrayed by our bodies and the effect of body image on everything. Even just a few pounds can have an impact. The results of my surgery will be a bit more dramatic than a few extra pounds and I'm concerned about being able to pull out of it.
I have choices with this, I guess. I can be the victim of this thing that's out of my control and I can let the results of my surgery obliterate my motivation and self-confidence or I can find a way to focus on other positive things and minimize the impact. I know that sounds easy enough. And I have control over the choice. But it really is tougher than it sounds. At least for me. Some days I think I can do it. No problem. Other days, it seems overwhelming and why bother since I have no control over the outcomes of this surgery and cancer.
Today I'm on the up swing side of it all. I ran about 4 miles and walked about another half. I listened to the other runners on The Extra Mile Podcast and I felt motivated and rejuvinated in my personal power and hope for the future.
Also today my parents are coming to visit for about 10 days. That will be great! They are a wonderful source of support for me and mom will go to the second opinion clinic with me because Ken will be at a conference.
Also, we'll work on our perpetual project to finish the basement and it will be wonderful to continue creating a new oasis down there. We've got a ranch with a walk-out basement. The upstairs is 3 bedroom, 2 bath. The basement has 2 additional bedrooms, a full bath, storage rooms, a very large workshop, a kitchenette, and a family room. The kitchenette has an oven, microwave, dishwasher and full fridge. The Ikea cabinets are fabulous, as is the little granite countertop. This trip, we'll probably work on the window seat which consists of floor to ceiling Ikea cabinets flanking a large window (5'x 6') and matching cabinets underneath the window with the cushion area on top. Will be great!
Maybe I'll figure out how to post some pics of our progress.
A big thank you goes out to my friends (and Ken) who took the brunt of the "down" mood last night and were supportive and understanding as always. I know I'll continue to have some of that going on, but I hope it wanes as my positive motivation drives it out. Have a great weekend, everyone.
Labels:
basement,
body image,
breast cancer,
renovation,
running
Friday, October 16, 2009
Surgery is scheduled
I guess the optimism paid off. My surgery is scheduled for November 23, 2009 at noon. I'll have to be there in the morning, though. Now I just need to schedule a pre-op appt with the plastic surgeon. My pre-op with my surgical oncologist is Nov 10.
It is a big relief to me to have this scheduled as I was getting quite anxious about waiting.
I'm still going to do the MRI on Monday and the second opinion clinic on Wednesday, but I'm not expecting either experience to alter my decision.
I'm anxious about the MRI. I'm expecting results on Oct 23. What if it shows a more serious situation with multiple tumors and possible lymph node involvement? I'm very afraid of that possibility. If that is the case, I may not be able to get implants and I probably will have to postpone reconstruction until I go through radiation and chemo, both of which I am desperately hoping to avoid. It's also possible they could decide to move the surgery to an earlier date if the prognosis becomes worse.
I have block to all that from my mind, though. The doctor really does not think there is any lymph node involvement. He thinks it's very early and there is only one instance of ILC. I so very much hope he is correct. We won't really know until after surgery though. I wonder if I'll know November 24 or if all the tissue has to go to a lab and I'll have to wait another week or two for results. I guess that is a pre-op appointment question I should ask.
Another hurdle is complete though. I guess that means I'm still moving along. I've taken another step to get through this.
It is a big relief to me to have this scheduled as I was getting quite anxious about waiting.
I'm still going to do the MRI on Monday and the second opinion clinic on Wednesday, but I'm not expecting either experience to alter my decision.
I'm anxious about the MRI. I'm expecting results on Oct 23. What if it shows a more serious situation with multiple tumors and possible lymph node involvement? I'm very afraid of that possibility. If that is the case, I may not be able to get implants and I probably will have to postpone reconstruction until I go through radiation and chemo, both of which I am desperately hoping to avoid. It's also possible they could decide to move the surgery to an earlier date if the prognosis becomes worse.
I have block to all that from my mind, though. The doctor really does not think there is any lymph node involvement. He thinks it's very early and there is only one instance of ILC. I so very much hope he is correct. We won't really know until after surgery though. I wonder if I'll know November 24 or if all the tissue has to go to a lab and I'll have to wait another week or two for results. I guess that is a pre-op appointment question I should ask.
Another hurdle is complete though. I guess that means I'm still moving along. I've taken another step to get through this.
Thursday, October 15, 2009
Plastics Doc
I had the plastic surgery consult today and it went very well. I really like the doctor. He was fantastic. I even saw an old friend there who is now the clinic manager for the plastic surgery group.
Now that is out of the way, I hope we can get the surgery "on the books." I don't want to wait for the second opinion and MRI because I'm getting axious to get the cancer out of me before it grows more - and because I want some recovery time before Christmas. The plastic surgeon was certainly willing to get the date scheduled and I hope I can convince my surgical oncologist;s group to do it too.
I'm almost certain I'm getting the bilateral mastectomy with the reconstruction done with expanders and implants. I was suprised to learn there wasn't quite enough fat in my stomach to do the tissue donor instead of implant - it seems like there is plenty there to me! Guess I shouldn't have turned down all that cheesecake! Seriously though, I was nervous about getting the second incision and the resulting recovery on my stomach. I was also concerned about the impact to future sport activities. The doctor agreed the tummy involvement would make the rehab much tougher for sports and working out.
The kids' parent teacher conferences went great too. Both kids have A's and are well-liked by their teachers. The oldest was praised for being a hard-worker and responsible and the youngest is going into an "enrichment" program because he's testing at a grade higher in many things. I hope they continue to excel depite some challenges and difficulties that will be going on at home with my surgeries and treatment.
So that's the news for the day. I hope I'll have more tomorrow, maybe even a scheduled surgery date. But I'm sure that's being just too optimistic. It's a good thing I still have some of that optimism left though, I'm going to need it as I move through this ordeal, I'm sure.
Now that is out of the way, I hope we can get the surgery "on the books." I don't want to wait for the second opinion and MRI because I'm getting axious to get the cancer out of me before it grows more - and because I want some recovery time before Christmas. The plastic surgeon was certainly willing to get the date scheduled and I hope I can convince my surgical oncologist;s group to do it too.
I'm almost certain I'm getting the bilateral mastectomy with the reconstruction done with expanders and implants. I was suprised to learn there wasn't quite enough fat in my stomach to do the tissue donor instead of implant - it seems like there is plenty there to me! Guess I shouldn't have turned down all that cheesecake! Seriously though, I was nervous about getting the second incision and the resulting recovery on my stomach. I was also concerned about the impact to future sport activities. The doctor agreed the tummy involvement would make the rehab much tougher for sports and working out.
The kids' parent teacher conferences went great too. Both kids have A's and are well-liked by their teachers. The oldest was praised for being a hard-worker and responsible and the youngest is going into an "enrichment" program because he's testing at a grade higher in many things. I hope they continue to excel depite some challenges and difficulties that will be going on at home with my surgeries and treatment.
So that's the news for the day. I hope I'll have more tomorrow, maybe even a scheduled surgery date. But I'm sure that's being just too optimistic. It's a good thing I still have some of that optimism left though, I'm going to need it as I move through this ordeal, I'm sure.
Beth - Welcome!
Beth, I'm so glad you found my blog in your search. What is your blog address? I'd like to follow you too, if you wouldn't mind.
Wednesday, October 14, 2009
Updates + Happy Birthdays
I didn't do much physical activity today but I had a great day at a culture retreat at work. I get inspired by these events when we can take some time out from the day-to-day work to connect with our colleagues and reflect on our strengths and challenges. The second (and last) day of the retreat is tomorrow so I don't know if I'll get a run in tomorrow either - probably not. The retreat starts early in the morning and we have parent/teacher conferences after work.
Ken and I will have to leave the retreat early tomorrow because we have an appointment with the plastic surgeon in the mid-afternoon. It's just a consultation, but I'm looking forward to learning about the options and I have lots of questions since many survivors have now shared their experiences with me.
Today I got an MRI scheduled for Monday, Oct 19. If I understood correctly, I won't get the results of the MRI until Friday of that week. Bummer. That means I won't have the MRI to share at the second opinion clinic with Riverside.
Ken's parents are here and are being incredibly helpful during these days when the kids are out of school and Ken and I have the two-day-long retreat. They also made dinner tonight, cleaned, brought sweet goodies, and gave the kids lots of attention. It has been wonderful! Thank you, Jan and Jim!!!
And lastly, a big HAPPY BIRTHDAY goes out to two blog followers: Dan and Jim. I know Dan was in the retreat all day and Jim was crazy busy at work, but I hope you both took some time to do something you love to do. Celebrate life!
Ken and I will have to leave the retreat early tomorrow because we have an appointment with the plastic surgeon in the mid-afternoon. It's just a consultation, but I'm looking forward to learning about the options and I have lots of questions since many survivors have now shared their experiences with me.
Today I got an MRI scheduled for Monday, Oct 19. If I understood correctly, I won't get the results of the MRI until Friday of that week. Bummer. That means I won't have the MRI to share at the second opinion clinic with Riverside.
Ken's parents are here and are being incredibly helpful during these days when the kids are out of school and Ken and I have the two-day-long retreat. They also made dinner tonight, cleaned, brought sweet goodies, and gave the kids lots of attention. It has been wonderful! Thank you, Jan and Jim!!!
And lastly, a big HAPPY BIRTHDAY goes out to two blog followers: Dan and Jim. I know Dan was in the retreat all day and Jim was crazy busy at work, but I hope you both took some time to do something you love to do. Celebrate life!
Tuesday, October 13, 2009
Moving along
Ran 2 miles again this morning: 11:21 and 11:39. Pace was actually faster during second mile, but I stopped at about 1.5 to stretch my back and kept the time running while stretching. Was an okay run. Nice morning, but still dark when I came in. It's much more fun when the sun comes up while I'm still out there.
Talked with my brother today. At his instance, I talked with the nurse practioner about scheduling an MRI. I should get a call from the secretary tomorrow and I'll get it scheduled. I have no idea when they can get me in for that. He also talked with his contacts in some excellent breast cancer treatment facilities and they suggested I call MD Anderson Cancer Center for a consultation. He said I won't have to go to Texas for this, I'd just have to send them my information. I'll look into it.
That's it. Ken's parents are here to help with the kids since they are off school the next three days. Thank goodness! I really appreciate all the support from everyone! Just tonight while I was watching swim practice, a good friend stopped by to see how I was doing. We talked for about an hour.
Talked with my brother today. At his instance, I talked with the nurse practioner about scheduling an MRI. I should get a call from the secretary tomorrow and I'll get it scheduled. I have no idea when they can get me in for that. He also talked with his contacts in some excellent breast cancer treatment facilities and they suggested I call MD Anderson Cancer Center for a consultation. He said I won't have to go to Texas for this, I'd just have to send them my information. I'll look into it.
That's it. Ken's parents are here to help with the kids since they are off school the next three days. Thank goodness! I really appreciate all the support from everyone! Just tonight while I was watching swim practice, a good friend stopped by to see how I was doing. We talked for about an hour.
Monday, October 12, 2009
Second Opinion
Wow, I just got off the phone with Riverside's second opinion clinic nurse. I'm amazed. I have an appointment for next Wednesday and will be seeing a whole team of doctors as well as survivors! I will meet with a surgeon, plastic surgeon, oncologist, and several others (I didn't have the presence of mind to write them all down). They will have all my records and I need to bring the "films" with me to the appointment. During the lunch break, volunteer breast cancer survivors will meet with us too.
Unfortunately, Ken will be out of town and can't make it to this appointment. My mother will probably be coming with me as she and Dad changed their flight plans to arrive about a week earlier than intended for a visit here. They will be here on Saturday.
I'm so excited about this appointment! The nurse was very supportive on the phone and I have a really good feeling about this opportunity. THANK YOU ALL who pushed me to get the second opinion. I really don't expect my treatment options to change as a result of this visit since the James doctor is fabulous and he outlined all the options. I think the biggest impact this clinic will have is on my psyche. The opportunity to have many people to talk with and ask questions will be very valuable. It was such a shock during my meeting with the James surgeon that I wasn't prepared to ask questions and I probably would not have been able to fully understand his answers anyway. This second opinion clinic is just what I need to help me be better informed and comfortable with my decision and the process I took to get there.
If you want to learn more about the clinic, see http://www.ohiohealth.com/body.cfm?id=783. The nurse said they won a national Komen award recently for this service. And, by the way, it is truly a service. There is no cost for this multi-hour consulation! Amazing.
I also have great news about the James consultation. The nurse practioner was able to get me an appointment with a plastic surgeon, Dr. Kocak, for Thursday, October 15 (almost 2 weeks sooner than my original appt). I'll have to miss an important retreat with my staff, but it's worth it. I'm anxous about waiting too long (hoping it won't spread while we wait) and I'd really like to get the surgery done so I can have recovery time before Christmas. I'd still like to travel to Nebraska for the holidays.
Unfortunately, Ken will be out of town and can't make it to this appointment. My mother will probably be coming with me as she and Dad changed their flight plans to arrive about a week earlier than intended for a visit here. They will be here on Saturday.
I'm so excited about this appointment! The nurse was very supportive on the phone and I have a really good feeling about this opportunity. THANK YOU ALL who pushed me to get the second opinion. I really don't expect my treatment options to change as a result of this visit since the James doctor is fabulous and he outlined all the options. I think the biggest impact this clinic will have is on my psyche. The opportunity to have many people to talk with and ask questions will be very valuable. It was such a shock during my meeting with the James surgeon that I wasn't prepared to ask questions and I probably would not have been able to fully understand his answers anyway. This second opinion clinic is just what I need to help me be better informed and comfortable with my decision and the process I took to get there.
If you want to learn more about the clinic, see http://www.ohiohealth.com/body.cfm?id=783. The nurse said they won a national Komen award recently for this service. And, by the way, it is truly a service. There is no cost for this multi-hour consulation! Amazing.
I also have great news about the James consultation. The nurse practioner was able to get me an appointment with a plastic surgeon, Dr. Kocak, for Thursday, October 15 (almost 2 weeks sooner than my original appt). I'll have to miss an important retreat with my staff, but it's worth it. I'm anxous about waiting too long (hoping it won't spread while we wait) and I'd really like to get the surgery done so I can have recovery time before Christmas. I'd still like to travel to Nebraska for the holidays.
Sunday, October 11, 2009
Thank you!!!
A big thank you goes out to everyone who has connected me with a breast cancer survivor. This has been exactly what I needed to help me with the treatment decision as well as with coming to terms with what I'm facing.
Today I talked with another friend-of-a-friend who gave me some insight about her experience with the bilateral mastecomy and reconstruction. I also am in an email conversation with a distant relative who had the surgeries. Both of these women are inspiring and I am very grateful to them for sharing such personal experiences and for being so candid.
I've heard from many friends and relatives who are keeping me in their prayers and my aunt has added me to a prayer chain now and will do so again during the surgery time. I also have some relatives who are much more knowledgable about health-related things, especially my brother and a couple of cousins' wives. They have been very helpful in offering their support along with valuable information and advice.
Many of you have asked how I am doing and I can honestly report that I'm emotionally more stable in the past few days. It has helped me very much to share the news with friends, colleagues, and family. Taking action by writing this blog, doing research online, and talking with other survivors has also been intrumental in my coping and moving forward.
As for next steps, I will continue to talk with survivors to gain perspective, information, and inspiration. I'll also contact another hospital to inquire about a second opinion and my nurse practitioner about advantages of getting an MRI. I'm already waiting for the nurse practitioner to get back with me regarding moving my reconstruction consultation to an earlier date. And now, I think I'll get some sleep. I have been sleeping pretty well lately, by the way. Tuesday and Wednesday were less-than-optimal sleep nights, but other than that, I've been sleeping pretty well. Good night, my friends.
Today I talked with another friend-of-a-friend who gave me some insight about her experience with the bilateral mastecomy and reconstruction. I also am in an email conversation with a distant relative who had the surgeries. Both of these women are inspiring and I am very grateful to them for sharing such personal experiences and for being so candid.
I've heard from many friends and relatives who are keeping me in their prayers and my aunt has added me to a prayer chain now and will do so again during the surgery time. I also have some relatives who are much more knowledgable about health-related things, especially my brother and a couple of cousins' wives. They have been very helpful in offering their support along with valuable information and advice.
Many of you have asked how I am doing and I can honestly report that I'm emotionally more stable in the past few days. It has helped me very much to share the news with friends, colleagues, and family. Taking action by writing this blog, doing research online, and talking with other survivors has also been intrumental in my coping and moving forward.
As for next steps, I will continue to talk with survivors to gain perspective, information, and inspiration. I'll also contact another hospital to inquire about a second opinion and my nurse practitioner about advantages of getting an MRI. I'm already waiting for the nurse practitioner to get back with me regarding moving my reconstruction consultation to an earlier date. And now, I think I'll get some sleep. I have been sleeping pretty well lately, by the way. Tuesday and Wednesday were less-than-optimal sleep nights, but other than that, I've been sleeping pretty well. Good night, my friends.
World Wide Festival of Races
I ran the World Wide Festival of Races today. If you're interested, I think you can still sign up and run your selected distance anywhere, anytime that fits your schedule. It's free, too. This blog posting is my formal "race report," so if you're interested in reading more about how I'm doing with coping with the news of being diagnoised with breast cancer, check out the other postings. This one is purely running.
I ran the 5K distance since I haven't been very good about training for the past . . . well, year, probably. Most weeks I've run at least once. Rarely have I run more than twice a week since my Oct 2008 half marathon. I've gotten back into it the past couple weeks though and am running 3 or 4 days a week now.
Ken took the kids to swim practice while I ran around our neighborhood, using my usual 1 mile loop. It was an absolutely beautiful day! It was mid-50's and sunny with little wind. The course is mostly flat, but a few hills, including a .3 mile slow climb which is annoying for me in my current shape. There's a great .1 mile down hill in one section.
I went out way too fast and I know better. I'm still a new runner, but after 3-4 years, I really do know better. The first mile was 9:53 which is really fast for me. The second mile was 10:08 which surprises me because I really felt like I slowed down and was struggling. The last mile was 10:01. I finished in 30:59 and was very wasted. Was tough to finish even the last .1, I thought, "Three miles is good enough isn't it? Do I really have to do the .1?" But of course, I decided that yes, I did need to keep churning.
My personal best 5K was under 30 minutes (the Race for the Cure in 2007), but I really trained for that race for several months and worked hard on speed work to make that goal. My long runs at that time were 6-8 miles. Currently, 3 miles is my long run. So, I was very happy with my time today.
I ran the 5K distance since I haven't been very good about training for the past . . . well, year, probably. Most weeks I've run at least once. Rarely have I run more than twice a week since my Oct 2008 half marathon. I've gotten back into it the past couple weeks though and am running 3 or 4 days a week now.
Ken took the kids to swim practice while I ran around our neighborhood, using my usual 1 mile loop. It was an absolutely beautiful day! It was mid-50's and sunny with little wind. The course is mostly flat, but a few hills, including a .3 mile slow climb which is annoying for me in my current shape. There's a great .1 mile down hill in one section.
I went out way too fast and I know better. I'm still a new runner, but after 3-4 years, I really do know better. The first mile was 9:53 which is really fast for me. The second mile was 10:08 which surprises me because I really felt like I slowed down and was struggling. The last mile was 10:01. I finished in 30:59 and was very wasted. Was tough to finish even the last .1, I thought, "Three miles is good enough isn't it? Do I really have to do the .1?" But of course, I decided that yes, I did need to keep churning.
My personal best 5K was under 30 minutes (the Race for the Cure in 2007), but I really trained for that race for several months and worked hard on speed work to make that goal. My long runs at that time were 6-8 miles. Currently, 3 miles is my long run. So, I was very happy with my time today.
Went well
We're headed off to church, but I wanted to send a quick note to let everyone know that the kids took the news very well and we're now "All in this together" (a reference to a High School Musical song).
Saturday, October 10, 2009
The handout
Lee Ann really got a kick out of the idea that I created a color handout for my staff and close colleagues. Since I love to make you all smile, I'm including here a link to the handout. I edited it a little before putting it online (took organizational names and such out of it). This file might require a pretty new version of Acrobat to open.
kelly's "what you can do" handout
Ken and I are talking with the kids about the diagnosis today. We've read some advice from the James Cancer site as well as in the book Jeff got me yesterday. I was glad to see the professional advice is consistent with how I wanted to handle it. We're being open about it and using the "C" word. We're also letting them know they can talk with us, friends, and family members about it whenever they desire. I'm talking with my daughter about it today while Ken and Jason are at the OSU game. Then we'll tell Jason later today or tomorrow.
kelly's "what you can do" handout
Ken and I are talking with the kids about the diagnosis today. We've read some advice from the James Cancer site as well as in the book Jeff got me yesterday. I was glad to see the professional advice is consistent with how I wanted to handle it. We're being open about it and using the "C" word. We're also letting them know they can talk with us, friends, and family members about it whenever they desire. I'm talking with my daughter about it today while Ken and Jason are at the OSU game. Then we'll tell Jason later today or tomorrow.
Blessed
I ran 2 miles after work today (Friday) - in the rain. Wow, this blog is really inspiring me! I also walked a good half mile as a cool-down.
I'm home late and publishing this in the wee hours of Saturday morning because I've had a fabulous day with many connections to people who have been incredibly caring and supportive. I'm certainly blessed with wonderful family, friends, and colleagues who have already been a great help and will carry me through this ordeal. Thank you all!
I'm making quite a bit of progress in finding people to talk with about their experiences with breast cancer. A friend at work gave me a couple of contacts that I'll try to contact soon. Another friend has a nurse friend who has offered to connect with me. I also have a nurse I met through Facebook's James Warriors group who has offered to meet me for lunch or after work sometime soon.
Between Michelle Z and my parents, I was connected to someone from my home state who chose a bilateral mastectomy. It was great to talk with her and I was very impressed with her attitude and appreciated learning what I may have in store for this surgery. She took care of it all at one time and now is done with it and that's exactly what she intended. She was fortunate to not need radiation or chemo after the surgery and has been cancer free ever since.
I also talked with my staff plus a few close colleagues today and they were great! I'm so glad I had that discussion and that I did it with them as a group. First I talked about the diagnosis and that it was caught early and is probably not life-threatening. Then, true to Kelly form, I gave them a beautiful, color handout with the heading "What you can do." I'll post that information on another blog, but essentially it was about asking me if they have questions, keeping me in the loop even when I'm out of the office, pitching in to help me and each other, keep things moving along and don't wait for me, etc.
While talking with my staff, I got even more resources for assistance. One has a friend who recently had a double mastectomy. Another sent me some links from an NPR show. And several of them talked about the actress Christina Applegate who had a double mastectomy and has been very vocal about it. They thought I’d be able to find quite a bit on the web about her experience and decision-making process.
Lastly, I called some long-time friends (Jeff and Jen) who I don't see often enough and they invited me to dinner tonight. We had a wonderful dinner, a few glasses of wine, and talked for hours, just like old times. I had such a great time and it was cathartic to reconnect with them. Jeff got me a book (Susan Love, M.D., The Breast Book). He's great about health research and knowledge - much, much better than I am, that's for sure! He says it's a very well respected and best-seller reference book that has been through several editions. Thank you, Jeff! Jen also gave me some contact information for a nurse friend who has had a mastectomy and is willing to share her experience with me.
I'm home late and publishing this in the wee hours of Saturday morning because I've had a fabulous day with many connections to people who have been incredibly caring and supportive. I'm certainly blessed with wonderful family, friends, and colleagues who have already been a great help and will carry me through this ordeal. Thank you all!
I'm making quite a bit of progress in finding people to talk with about their experiences with breast cancer. A friend at work gave me a couple of contacts that I'll try to contact soon. Another friend has a nurse friend who has offered to connect with me. I also have a nurse I met through Facebook's James Warriors group who has offered to meet me for lunch or after work sometime soon.
Between Michelle Z and my parents, I was connected to someone from my home state who chose a bilateral mastectomy. It was great to talk with her and I was very impressed with her attitude and appreciated learning what I may have in store for this surgery. She took care of it all at one time and now is done with it and that's exactly what she intended. She was fortunate to not need radiation or chemo after the surgery and has been cancer free ever since.
I also talked with my staff plus a few close colleagues today and they were great! I'm so glad I had that discussion and that I did it with them as a group. First I talked about the diagnosis and that it was caught early and is probably not life-threatening. Then, true to Kelly form, I gave them a beautiful, color handout with the heading "What you can do." I'll post that information on another blog, but essentially it was about asking me if they have questions, keeping me in the loop even when I'm out of the office, pitching in to help me and each other, keep things moving along and don't wait for me, etc.
While talking with my staff, I got even more resources for assistance. One has a friend who recently had a double mastectomy. Another sent me some links from an NPR show. And several of them talked about the actress Christina Applegate who had a double mastectomy and has been very vocal about it. They thought I’d be able to find quite a bit on the web about her experience and decision-making process.
Lastly, I called some long-time friends (Jeff and Jen) who I don't see often enough and they invited me to dinner tonight. We had a wonderful dinner, a few glasses of wine, and talked for hours, just like old times. I had such a great time and it was cathartic to reconnect with them. Jeff got me a book (Susan Love, M.D., The Breast Book). He's great about health research and knowledge - much, much better than I am, that's for sure! He says it's a very well respected and best-seller reference book that has been through several editions. Thank you, Jeff! Jen also gave me some contact information for a nurse friend who has had a mastectomy and is willing to share her experience with me.
Thursday, October 8, 2009
Update on diagnosis
I just realized today that the two parts to my diagnosis are important. I was focused on just the Invasive Lobular Carcinoma (ILC) because that is cancer. I also have "Lobular Carcinoma in situ" (LCIS) which is not cancer, but an indicator that I have a higher chance of developing more breast cancer in the future. LCIS is an area of abnormal tissue growth that occurs within — and stays within — the lobules or milk glands located at the end of the breast ducts.
Since I have LCIS on one side means both breasts probably have it. Also, since we know the left one has advanced to ILC (invasive cancer), the right one may have already done so or is likely to do so in the future. Just LCIS alone is not too bad, but is something to watch. Both ILC and LCIS together make me a high risk patient for recurrences. I think that's why they have recommended the bilateral mastectomy. I also have a complicating factor of dense breast tissue (ironically, I always thought was great!) which makes it even more difficult to find cancer in screenings.
Given all of this, it's remarkable that they found it so early. At least, I hope that's what is confirmed after surgery. Prior to that, it's difficult to know what is going on with the other side.
Since I have LCIS on one side means both breasts probably have it. Also, since we know the left one has advanced to ILC (invasive cancer), the right one may have already done so or is likely to do so in the future. Just LCIS alone is not too bad, but is something to watch. Both ILC and LCIS together make me a high risk patient for recurrences. I think that's why they have recommended the bilateral mastectomy. I also have a complicating factor of dense breast tissue (ironically, I always thought was great!) which makes it even more difficult to find cancer in screenings.
Given all of this, it's remarkable that they found it so early. At least, I hope that's what is confirmed after surgery. Prior to that, it's difficult to know what is going on with the other side.
Morning Person
I ran again this morning. It was dark at 6:30am and a bit chilly at 41 degrees. Actually, for running, 41 is not chilly. It's just cold enough that I wore a long sleeved t-shirt but I was too warm during the second mile. The same thing happened to me on Tuesday, but I just couldn't bring myself to get out there with short sleeves.
My back was tightening up during the second mile so I had to stop to stretch it and catch my breath before finishing the last .5. After the 2 miles (11:18 and 11:27), I did the virtuous thing and walked a bit to cool down. Although it's often my habit to run right in the front door and to the shower, I'm trying to follow the general wisdom of runners all over the world who insist that adding the cool down helps avoid injury. Besides, it's really annoying when I get out of the shower and am still sweating.
I'll bet you think I'm one of those crazy morning people because I'm often a pre-dawn runner. Those who know me really well know that I am certainly not a morning person. My parents will attest to the fact that, as a teenager, I would have totally missed all mornings if I was allowed to sleep undisturbed. And when I was in college as a late teen, I often did just that.
No, I'm not a morning person. It's just that if I don't run before I start the craziness of my day, I almost never get the run in later. I also feel much better about the day if I start it with a run. And once I get out there, it can be great to be out when the sun comes up. Hmmmm, well, I guess sometimes I can be a morning person, afterall.
I went into work this morning and had meetings pretty much all day until I had to get the kids to take them to swimming. Then I worked on the laptop while there.
On the health front, I have a consultation scheduled with the "plastics" people (reconstruction) for October 27. I also heard back from the nurse practitioner who said it wouldn't help me to do a second opinion visit with another doctor in the same practice because they use the same criteria for their recommendations. She suggested I go to Riverside. I'm not thrilled about that idea because of the hassle of getting everything to the other doctor and because they aren't in my medical plan so I'd have to pay out of pocket and I couldn't feasibly go to them anyway.
While I had the nurse on the phone I also expressed concern about the date of my "plastics" consultation. She didn't think it was an unreasonable wait, but I'm concerned about scheduling the surgery. They won't let me schedule it until I've had the plastics consult and my surgeon is already booked until Nov 17. Waiting until after Oct 27 will push my surgery back even further. I don't want surgery at Christmas time and waiting until January is too late, according to the nurse. I finally talked her into calling and begging to get me in earlier. She'll call me back tomorrow to let me know either way. I hope I don't end up with a less desirable plastics guy as a result.
Some good news on the financial front, I talked with the health plan people today and whatever surgery I choose is covered with a $300 or $350 co-pay, depending on outpatient or inpatient status. Reconstruction is covered also - regardless of which method I choose. Radiation and chemo, if I need it, is only covered at 80% though.
I think that's all the news I have for today. I've been talking with trusted friends to gain support and to find out if they know anyone who has been in my shoes. I haven't found anyone with a double mastectomy yet, but I have a few possible next steps in my search for knowledgable support.
My back was tightening up during the second mile so I had to stop to stretch it and catch my breath before finishing the last .5. After the 2 miles (11:18 and 11:27), I did the virtuous thing and walked a bit to cool down. Although it's often my habit to run right in the front door and to the shower, I'm trying to follow the general wisdom of runners all over the world who insist that adding the cool down helps avoid injury. Besides, it's really annoying when I get out of the shower and am still sweating.
I'll bet you think I'm one of those crazy morning people because I'm often a pre-dawn runner. Those who know me really well know that I am certainly not a morning person. My parents will attest to the fact that, as a teenager, I would have totally missed all mornings if I was allowed to sleep undisturbed. And when I was in college as a late teen, I often did just that.
No, I'm not a morning person. It's just that if I don't run before I start the craziness of my day, I almost never get the run in later. I also feel much better about the day if I start it with a run. And once I get out there, it can be great to be out when the sun comes up. Hmmmm, well, I guess sometimes I can be a morning person, afterall.
I went into work this morning and had meetings pretty much all day until I had to get the kids to take them to swimming. Then I worked on the laptop while there.
On the health front, I have a consultation scheduled with the "plastics" people (reconstruction) for October 27. I also heard back from the nurse practitioner who said it wouldn't help me to do a second opinion visit with another doctor in the same practice because they use the same criteria for their recommendations. She suggested I go to Riverside. I'm not thrilled about that idea because of the hassle of getting everything to the other doctor and because they aren't in my medical plan so I'd have to pay out of pocket and I couldn't feasibly go to them anyway.
While I had the nurse on the phone I also expressed concern about the date of my "plastics" consultation. She didn't think it was an unreasonable wait, but I'm concerned about scheduling the surgery. They won't let me schedule it until I've had the plastics consult and my surgeon is already booked until Nov 17. Waiting until after Oct 27 will push my surgery back even further. I don't want surgery at Christmas time and waiting until January is too late, according to the nurse. I finally talked her into calling and begging to get me in earlier. She'll call me back tomorrow to let me know either way. I hope I don't end up with a less desirable plastics guy as a result.
Some good news on the financial front, I talked with the health plan people today and whatever surgery I choose is covered with a $300 or $350 co-pay, depending on outpatient or inpatient status. Reconstruction is covered also - regardless of which method I choose. Radiation and chemo, if I need it, is only covered at 80% though.
I think that's all the news I have for today. I've been talking with trusted friends to gain support and to find out if they know anyone who has been in my shoes. I haven't found anyone with a double mastectomy yet, but I have a few possible next steps in my search for knowledgable support.
Wednesday, October 7, 2009
Research and work
Not much physical activity today, however I got outside for my son's baseball game this evening. It was a bit cold and windy for sitting, but it made me wish I had gone out to run at some point during the day.
Although I haven't been physcially active, I have been very busy today. I cleared out my work emails, did some work required by them, and even initiated a few things. For about half of the day, I also did a lot of personal work related the treatment decisions I'm facing.
I researched Invasive Lobular Carcinoma online and now I'm more confused about selecting the mastectomy vs. lumpectomy. I sent an email to the nurse practioner and to another doctor in the same practice to try to get another doctor to look at my file and give me a call. I want a second opinion and I'd prefer to get it from another doctor in the practice to stay in the same system (for ease/speed of the process as well as because this is the practice my health plan will cover). Neither the doctor nor the nurse responed today.
I also called the secretary to get the reconstruction (plastics, as they call it) consultation appointment. I talked with her and am waiting for her to inform me as to the appointment date and time. Why couldn't I just call them and schedule this?
This whole fiasco has made me anxious about my gyn health, because for the first time since I was 16, I skipped a screening this past year. So I called my ob/gyn and scheduled an appointment for late November.
I even have a call into my health plan to learn about coverage for the surgery options as well as reconstruction. I'm waiting on their response too.
For someone with very little time to make a major decision, I seem to be doing a lot of waiting. Thanks to all of you, I am not waiting on my friends though. You all have been wonderful in providing support and caring phone calls and emails to me and my husband.
Although my friends are very stong supporters, I am also looking for some breast cancer survivors to talk with. Today I emailed a knowledgeable and well-connected friend to search out anyone who has been in my shoes. She might have a contact and will make some calls and get back with me. I looked online for support groups, but didn't find much that looked relevant and interesting to me. If you know of a group or person with whom I could connect, certainly pass the information along to me. I found a Facebook group for James Cancer Warriors and joined it. Through that, I also emailed a survivor asking for support and information.
Lastly, I scheduled a meeting with my staff for Friday early afternoon and drafted some notes about what I'll cover in that meeting. I ran my ideas by a trusted friend and was given the "thumbs up" for what I have planned. I will tell them about my diagnosis and provide some direction about what they can do to help and support me and each other.
Although I haven't been physcially active, I have been very busy today. I cleared out my work emails, did some work required by them, and even initiated a few things. For about half of the day, I also did a lot of personal work related the treatment decisions I'm facing.
I researched Invasive Lobular Carcinoma online and now I'm more confused about selecting the mastectomy vs. lumpectomy. I sent an email to the nurse practioner and to another doctor in the same practice to try to get another doctor to look at my file and give me a call. I want a second opinion and I'd prefer to get it from another doctor in the practice to stay in the same system (for ease/speed of the process as well as because this is the practice my health plan will cover). Neither the doctor nor the nurse responed today.
I also called the secretary to get the reconstruction (plastics, as they call it) consultation appointment. I talked with her and am waiting for her to inform me as to the appointment date and time. Why couldn't I just call them and schedule this?
This whole fiasco has made me anxious about my gyn health, because for the first time since I was 16, I skipped a screening this past year. So I called my ob/gyn and scheduled an appointment for late November.
I even have a call into my health plan to learn about coverage for the surgery options as well as reconstruction. I'm waiting on their response too.
For someone with very little time to make a major decision, I seem to be doing a lot of waiting. Thanks to all of you, I am not waiting on my friends though. You all have been wonderful in providing support and caring phone calls and emails to me and my husband.
Although my friends are very stong supporters, I am also looking for some breast cancer survivors to talk with. Today I emailed a knowledgeable and well-connected friend to search out anyone who has been in my shoes. She might have a contact and will make some calls and get back with me. I looked online for support groups, but didn't find much that looked relevant and interesting to me. If you know of a group or person with whom I could connect, certainly pass the information along to me. I found a Facebook group for James Cancer Warriors and joined it. Through that, I also emailed a survivor asking for support and information.
Lastly, I scheduled a meeting with my staff for Friday early afternoon and drafted some notes about what I'll cover in that meeting. I ran my ideas by a trusted friend and was given the "thumbs up" for what I have planned. I will tell them about my diagnosis and provide some direction about what they can do to help and support me and each other.
Tuesday, October 6, 2009
News - both good and bad
What a difference a day makes. This morning, I ran 2 miles - about 11:30 and 10:20. Started out a bit stiff and sore but pushed myself the last mile.
So I had my surgical oncology appointment today. I guess it’s not bad news, but certainly not good news either. I do have breast cancer. It is in a very tiny section (centimeter-ish) but it is the invasive kind and what’s even more troubling is where it is and the makeup of the surrounding tissues. We are fortunate to find it so early since this type of cancer lurks and hides from mammograms and self-exams. Typically, they don’t find this kind until it’s golf-ball size or larger. Also, it's good news that the prognosis is excellent. If treated aggressively, I will not die from breast cancer now or ever.
The bad news is that if they go in and do a lumpectomy and get everything, I’m still highly likely to have recurrences given the type of breast cancer tissue I have. And right now it’s just the left side that we know of, but in the future (or even now) it could be in either breast and could lurk undetected until it is much more serious. We have basically three treatment options:
I've only been dealing with this for a few hours now. I hope I get more grateful as time goes on. I'm very happy that I'll be around for everything my kids have in store for the future. And grandkids too. But for now - for right now - I'm grieving.
So I had my surgical oncology appointment today. I guess it’s not bad news, but certainly not good news either. I do have breast cancer. It is in a very tiny section (centimeter-ish) but it is the invasive kind and what’s even more troubling is where it is and the makeup of the surrounding tissues. We are fortunate to find it so early since this type of cancer lurks and hides from mammograms and self-exams. Typically, they don’t find this kind until it’s golf-ball size or larger. Also, it's good news that the prognosis is excellent. If treated aggressively, I will not die from breast cancer now or ever.
The bad news is that if they go in and do a lumpectomy and get everything, I’m still highly likely to have recurrences given the type of breast cancer tissue I have. And right now it’s just the left side that we know of, but in the future (or even now) it could be in either breast and could lurk undetected until it is much more serious. We have basically three treatment options:
- the lumpectomy which is least traumatic right now and would most likely solve the immediate presenting problem . . . . I’d then be getting mammograms every 3-6 months and hoping for no recurrence and hoping the mammogram will find it if indeed I have cancer cells that develop
- total mastectomy of the left breast which will most likely solve the problem for now and the future on that side . . . however, I’d have to get mammograms every 3-6 months on the other side and hope the mammogram finds any cancer cells that develop in the right side (which is risky because it can lurk)
- total mastectomy for both breasts – with or without reconstructive surgery. I’d lose both breasts and even if we do reconstruction, it will not bring back feeling so my breasts would be numb – like prosthetics.
I've only been dealing with this for a few hours now. I hope I get more grateful as time goes on. I'm very happy that I'll be around for everything my kids have in store for the future. And grandkids too. But for now - for right now - I'm grieving.
Monday, October 5, 2009
Mileage challenge; day of rest
After running 3.1 miles yesterday (my weekly "long" run distance right now), today I should not run. Oh sure, you say, she's backing out of the running thing on day 2 of her blog! What a whimp! Au contraire, my friend. According to many Runners World articles, netcommunity podcasts, and perhaps the Almighty Him/Herself (assuming His/Her long run was on Saturdays), the day after the long run is, indeed, a day of rest.
Although I don't always apply marathon runners' advice to my measly mileage, I have learned that I shouldn't run too frequently after a break or I'll get injured. I've been fortunate those injuries are usually just chronic cramping in the calf or soleus or hip, but when it is bad enough it can stop my running completely for a few days or even a week and then I'm back where I started.
So today was a pseudo-rest day. But before you picture me sitting on steverunner's "couch of doom," I must say that I did take 14,760 steps today. My workplace has a mileage challenge going on right now and I'm on a team with 4 colleagues competing against ~600 other teams to log miles over a few months. To track the steps, I wear a pedometer for tracking daily walking, add my running/walking for exercise mileage (1 mile = 2,000 steps), and use the conversion chart for other activities such as volleyball.
Today I coached my daughter's volleyball team and got quite a workout during that time as I played pepper with them and tried to speed up their reflexes a bit. I also walked/jogged to the gym since it was only about .75 mile from home.
I expect tomorrow to be a difficult day. My husband and I have an appointment with the surgical oncologist to try to figure out our next step for addressing the malignant cells found in my breast about 10 days ago. Since I was referred to a surgeon, I suspect surgery is a likely option, but I know very little about the dianosis or options at this point. Tomorrow, I hope we get some good news in the midst of this difficult ordeal.
Although I don't always apply marathon runners' advice to my measly mileage, I have learned that I shouldn't run too frequently after a break or I'll get injured. I've been fortunate those injuries are usually just chronic cramping in the calf or soleus or hip, but when it is bad enough it can stop my running completely for a few days or even a week and then I'm back where I started.
So today was a pseudo-rest day. But before you picture me sitting on steverunner's "couch of doom," I must say that I did take 14,760 steps today. My workplace has a mileage challenge going on right now and I'm on a team with 4 colleagues competing against ~600 other teams to log miles over a few months. To track the steps, I wear a pedometer for tracking daily walking, add my running/walking for exercise mileage (1 mile = 2,000 steps), and use the conversion chart for other activities such as volleyball.
Today I coached my daughter's volleyball team and got quite a workout during that time as I played pepper with them and tried to speed up their reflexes a bit. I also walked/jogged to the gym since it was only about .75 mile from home.
I expect tomorrow to be a difficult day. My husband and I have an appointment with the surgical oncologist to try to figure out our next step for addressing the malignant cells found in my breast about 10 days ago. Since I was referred to a surgeon, I suspect surgery is a likely option, but I know very little about the dianosis or options at this point. Tomorrow, I hope we get some good news in the midst of this difficult ordeal.
Sunday, October 4, 2009
Getting back into running
I'm an inconsistent runner; well, inconsistent in training but consistently slow.
I run occasional local 5Ks for charity (fastest was just under 30 minutes) and my biggest running achievement was a half marathon in October 2008 which I finished under 2:30. My running schedule has been lax since the half marathon and I have struggled with motivation.
I want to be running 3 to 4 days a week. I feel much better after being out on a run. I have more energy, am happier, and much more productive if I just take 30 minutes to run. So why is it so tough to get out there? Currently, I'm running only one or two days a week but I'm hoping this blog will motivate me to be more active.
I started running in 2004 and have run the Race for the Cure every year since. I ran it in memory of my friend, Cathy Cooper who lost her battle with breast cancer. Ironically, this week I found that I am facing that disease myself. It's still too early to know what is going on with me and I feel just fine, but I got the news on Wednesday that I need to see a surgeon to address some misbehaving cells. I decided to start this blog to help motivate my running as well as everything else I strive to accomplish with work, friendships, and family.
Today I ran 3.1 (5K) and walked another half mile or so. The Garmin watch says I ran three one mile splits at 11:22, 11:40, and 10:44. I wanted to stop at about half way through, so I slowed down a little and then got more energy toward the end. It felt good to be out there.
While I ran, I listened to Steverunner's 200th podcast where he discussed . . . what else. . . the meaning of life. He talked about life being a gift. (How apropos given my current situation.) He believes the purpose of life is to make the world a better place than it was before you were given the gift. However you do that is personal. What is your calling? His is to do the goofy podcast on running and to try to get us all off the "couch of doom." I, for one, am grateful he has heard that calling. If you haven't checked out Steverunner's podcast and web site, do it. He's great!
I run occasional local 5Ks for charity (fastest was just under 30 minutes) and my biggest running achievement was a half marathon in October 2008 which I finished under 2:30. My running schedule has been lax since the half marathon and I have struggled with motivation.
I want to be running 3 to 4 days a week. I feel much better after being out on a run. I have more energy, am happier, and much more productive if I just take 30 minutes to run. So why is it so tough to get out there? Currently, I'm running only one or two days a week but I'm hoping this blog will motivate me to be more active.
I started running in 2004 and have run the Race for the Cure every year since. I ran it in memory of my friend, Cathy Cooper who lost her battle with breast cancer. Ironically, this week I found that I am facing that disease myself. It's still too early to know what is going on with me and I feel just fine, but I got the news on Wednesday that I need to see a surgeon to address some misbehaving cells. I decided to start this blog to help motivate my running as well as everything else I strive to accomplish with work, friendships, and family.
Today I ran 3.1 (5K) and walked another half mile or so. The Garmin watch says I ran three one mile splits at 11:22, 11:40, and 10:44. I wanted to stop at about half way through, so I slowed down a little and then got more energy toward the end. It felt good to be out there.
While I ran, I listened to Steverunner's 200th podcast where he discussed . . . what else. . . the meaning of life. He talked about life being a gift. (How apropos given my current situation.) He believes the purpose of life is to make the world a better place than it was before you were given the gift. However you do that is personal. What is your calling? His is to do the goofy podcast on running and to try to get us all off the "couch of doom." I, for one, am grateful he has heard that calling. If you haven't checked out Steverunner's podcast and web site, do it. He's great!
Labels:
breast cancer,
race for the cure,
running,
steverunner
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