Yesterday I met with the radiation oncologist for the first time. I was so hopeful that after that appointment I would finally have some certainty and know what was next and when that next step was coming. But the appointment left me more in the dark than ever.
The surgeon prepared me for the fact that I was facing 6 weeks of daily radiation. The medical oncologist also told me I was looking at 6 weeks of daily radiation. But the doctor in charge of the radiation process isn't so sure about all of that.
I never realized I would potentially have other options. But apparently I might.
One potential plan is the six weeks of once daily radiation that I've been mentally preparing for. But I may be a good candidate for a more intensive round of twice daily radiation that lasts only five days. That would certainly be easier on my life. The side effects would be more intense, but not for nearly as long. Perhaps I'd have to take a couple days off work to rest up, but compared to six weeks of daily radiation and weeks (perhaps months) of fatigue...the quick and intense option sounds appealing to me.
And another option that I never would have dreamed of would be even easier. I might be able to skip radiation altogether. The doctor put all my risk factors into something called the Van Nuys Prognostic Index and determined that my score is 6, which means I have a pretty good shot of this being over and done with without having to mess with radiation at all.
I've been dreading radiation. It would be much easier if I didn't have to go through it. But at the same time, the thought of skipping that precautionary step scares me. A lot. The last thing I want is for the cancer to come back. And radiation will reduce the chance of the cancer coming back. Sure...my score of 6 bodes well for not needing to be zapped. But if my score had been one point higher--a 7--they wouldn't even be tossing this option around. They would radiate me without question. And I'm not convinced that I trust these people in Van Nuys enough to take that risk over one point...especially knowing that my mother's breast cancer did come back, even after she had been treated with radiation. If the miracle radiologist hadn't found my lump in its ridiculously early stage, and this had all happened a year from now instead...I'd probably have been a 7. Which is the greater risk--over-treating or under-treating?
Before any decisions are made, there is a CAT Scan in my future. That will help the doctors to see something about the cavity where the lump was removed (sorry...the details started to blur at this point in the appointment) to see if the 5 day radiation is a viable option. Then "Cancer Council" will convene to discuss me. This is a group of doctors including my surgeon and the radiation oncologist and some other experts. They'll talk amongst themselves as to what might be best for me. Then the radiation oncologist will report back to me and I'll have to decide how to proceed.
In short...what I know now is that I won't really know anything about my future for at least a few more weeks.
Waiting. Again. Always waiting.
Thursday, January 26, 2012
Sunday, January 22, 2012
Cancer Takes an Icon
Today cancer took the life of an icon.
Former Penn State football coach Joe Paterno died as a result of complications with his treatment for lung cancer.
The end of Coach Paterno's 61-year career with Penn State was tainted by scandal--fallout from the actions of former assistant coach Jerry Sandusky. I honestly believe Coach Paterno was relieved of his duties less because of any failures on his part, and more because his presence was so large that it was necessary to remove him from the equation in order to dim the spotlight shining so brightly on Penn State University when that scandal broke. Regardless, it was only days after he stopped coaching that Paterno was diagnosed with lung cancer.
I can't help but think that JoePa must have been carrying this cancer around in his body for a very long time prior to its diagnosis. When he stopped in the Law School briefly last summer, I took a good look at him through our office suite door. He was pale. And frail. Not at all the vibrant man with the rolled up pant legs that used to pace the sidelines during games. At the time I chalked it up to old age. He was 84 at that point. And he had never slowed down. He worked hard to the very end. And I actually think that may have been his downfall.
Maybe Joe should have taken it easy. Perhaps retired. At least taken an extended vacation. And definitely he should have seen a doctor sooner and listened to what his body was trying to say. I don't think it's an accident that his diagnosis came so soon after he was forced to stop coaching. The situation finally afforded him the time to address a health issue that likely should have been acknowledged much earlier. Would an earlier diagnosis have extended JoePa's life? We can't know. Lung cancer doesn't have an extraordinarily good survival rate in the best of circumstances. But earlier diagnosis sure couldn't have hurt!
One final lesson from legendary Coach Paterno: Take the time to take care of yourself. It could save your life.
I leave you with the above video...which will always remain one of my favorite Joe Paterno memories.
Former Penn State football coach Joe Paterno died as a result of complications with his treatment for lung cancer.
The end of Coach Paterno's 61-year career with Penn State was tainted by scandal--fallout from the actions of former assistant coach Jerry Sandusky. I honestly believe Coach Paterno was relieved of his duties less because of any failures on his part, and more because his presence was so large that it was necessary to remove him from the equation in order to dim the spotlight shining so brightly on Penn State University when that scandal broke. Regardless, it was only days after he stopped coaching that Paterno was diagnosed with lung cancer.
I can't help but think that JoePa must have been carrying this cancer around in his body for a very long time prior to its diagnosis. When he stopped in the Law School briefly last summer, I took a good look at him through our office suite door. He was pale. And frail. Not at all the vibrant man with the rolled up pant legs that used to pace the sidelines during games. At the time I chalked it up to old age. He was 84 at that point. And he had never slowed down. He worked hard to the very end. And I actually think that may have been his downfall.
Maybe Joe should have taken it easy. Perhaps retired. At least taken an extended vacation. And definitely he should have seen a doctor sooner and listened to what his body was trying to say. I don't think it's an accident that his diagnosis came so soon after he was forced to stop coaching. The situation finally afforded him the time to address a health issue that likely should have been acknowledged much earlier. Would an earlier diagnosis have extended JoePa's life? We can't know. Lung cancer doesn't have an extraordinarily good survival rate in the best of circumstances. But earlier diagnosis sure couldn't have hurt!
One final lesson from legendary Coach Paterno: Take the time to take care of yourself. It could save your life.
I leave you with the above video...which will always remain one of my favorite Joe Paterno memories.
Saturday, January 21, 2012
The Importance of the Bear
The thing that has been the most amazing to me since my diagnosis is the outpouring of caring from other people. A steady stream of greeting cards has flooded my mailbox in the past few weeks. And while a card doesn't necessarily seem like a big deal to the sender, I assure you it is a great comfort to the receiver. Knowing that others care and want to help makes everything a bit easier.
Last Saturday I received a package in the mail. From complete strangers. Four breast cancer survivors (including one who is friends with my sister) formed a group called "Pink BCause." When they learn of people recently diagnosed, they send a care package. My box included a journal, a book of inspirational stories from breast cancer survivors, a lot of literature about breast cancer and treatment, some assorted other pink ribbon and inspirational things, and my favorite piece...a teddy bear.
Now kids really get the importance of the teddy bear. Your bear pal is always there. It's a source of comfort. A hug whenever you might need one. Something to always hang onto for support. As adults we sort of lose touch with that concept. We lean on other people and sometimes pets for comfort and support. But other people and pets aren't always available or perceptive to your need for a hug. My week with my new bear has been wonderful. He sits next to me on the sofa when I relax in front of the TV. He is soft and comforting and reminds me how much people care about me. And he hugs me whenever I want. Children understand. We should never forget the importance of the bear.
And while we're on the subject of caring, I have to give a shout-out to my friend Laura who had planned to fly in from Michigan to spend the weekend with me. I didn't ask her to come. She just wanted to come and take care of me and make sure I was really OK. And until she said she was coming I hadn't realized just how badly I wanted all of my best friends to be by my side rather than scattered all over the country. I know they are there for me. I know I can call them any time day or night. But I miss my friends and I want to actually be in the same room with them during this particularly challenging time. Thankfully, they are all working on plans to get here. Laura was to be first. She booked a flight and everything was going well. Her first leg from Kalamazoo to Detroit went off with only a minor delay. And then her flight from Detroit to State College was delayed. And delayed again. And delayed again. And then canceled. And her alternate flight the next morning....also canceled. Mother Nature just didn't want Laura to be able to get here this weekend. Through some miracle, Laura ran into a co-worker in the Detroit airport who was driving to Battle Creek, so Laura's husband didn't have to load the kids into the family truckster and journey all the way to Detroit in the snow in order to get her home last night. But hats off to an amazing friend who went on a twelve hour trip to nowhere and then still had to make a morning journey to the airport today to retrieve her suitcase. All for me.
I have amazing friends. Thank you to all of you for the never-ending support. You make this so much easier to go through. I wish you all a teddy bear of your own. :-)
Last Saturday I received a package in the mail. From complete strangers. Four breast cancer survivors (including one who is friends with my sister) formed a group called "Pink BCause." When they learn of people recently diagnosed, they send a care package. My box included a journal, a book of inspirational stories from breast cancer survivors, a lot of literature about breast cancer and treatment, some assorted other pink ribbon and inspirational things, and my favorite piece...a teddy bear.
Now kids really get the importance of the teddy bear. Your bear pal is always there. It's a source of comfort. A hug whenever you might need one. Something to always hang onto for support. As adults we sort of lose touch with that concept. We lean on other people and sometimes pets for comfort and support. But other people and pets aren't always available or perceptive to your need for a hug. My week with my new bear has been wonderful. He sits next to me on the sofa when I relax in front of the TV. He is soft and comforting and reminds me how much people care about me. And he hugs me whenever I want. Children understand. We should never forget the importance of the bear.
And while we're on the subject of caring, I have to give a shout-out to my friend Laura who had planned to fly in from Michigan to spend the weekend with me. I didn't ask her to come. She just wanted to come and take care of me and make sure I was really OK. And until she said she was coming I hadn't realized just how badly I wanted all of my best friends to be by my side rather than scattered all over the country. I know they are there for me. I know I can call them any time day or night. But I miss my friends and I want to actually be in the same room with them during this particularly challenging time. Thankfully, they are all working on plans to get here. Laura was to be first. She booked a flight and everything was going well. Her first leg from Kalamazoo to Detroit went off with only a minor delay. And then her flight from Detroit to State College was delayed. And delayed again. And delayed again. And then canceled. And her alternate flight the next morning....also canceled. Mother Nature just didn't want Laura to be able to get here this weekend. Through some miracle, Laura ran into a co-worker in the Detroit airport who was driving to Battle Creek, so Laura's husband didn't have to load the kids into the family truckster and journey all the way to Detroit in the snow in order to get her home last night. But hats off to an amazing friend who went on a twelve hour trip to nowhere and then still had to make a morning journey to the airport today to retrieve her suitcase. All for me.
I have amazing friends. Thank you to all of you for the never-ending support. You make this so much easier to go through. I wish you all a teddy bear of your own. :-)
Friday, January 13, 2012
Black Friday
I've had a busy week and have a lot of things on my mind today.
This was my first full week back at work since my diagnosis, which now seems like forever ago even though it was only a few weeks. In retrospect, I really should have taken one more day after my lumpectomy before returning to work. I only took two days off for that procedure and the recovery because it's a tough time of year for me at work. One more day (a Friday) would have given me a 5 day period for the surgery and recovery, which would have been a good idea. Instead I went back to work on a Friday and I feel like I've never really caught up on the rest that procedure really required. But I have learned my lesson and promise to allow myself to rest when I need it in the future.
Yesterday I met with my oncologist for the first time. I really like him. He's personable and amusing, which I like in a health care professional. It helps to put me at ease in an otherwise uneasy situation. The appointment basically served to lay out my path for my treatment. I'm set up to start radiation at the end of this month. I learned from the oncologist that radiation has the potential to weaken my bones. I already take a daily calcium supplement because I'm kind of paranoid about becoming a stooped over old lady with osteoporosis in the future. Now, I have extra reason to fret over that. On Monday I'll have a Dexa Scan done to measure my bone density. The doctor wants to have a baseline measurement so we know if the radiation is causing me any damage. Fun, huh? And the next step in my treatment after that is tamoxifen. This drug has produced excellent results in reducing recurrence of cancer. It also will give me side effects that simulate menopause. Bring on the hot flashes and mood swings! And as an extra added bonus, when I finish my five years of tamoxifen it should be just in time for me to start my actual menopause. I hope my boyfriend Nick is ready for this. I may be hormonal and on my own personal tropical vacations for the next decade!
This was kind of a lot to swallow on top of everything else I've been going through. I'm way behind on my work and not feeling up to working beyond my normal day because I'm tired all the time. And today all the stress mounted to a point where I had a complete meltdown at work. I sat and cried in frustration because I just don't know how I'm going to handle everything. My co-worker Susanna (who is a goddess and has been taking on a lot of extra tasks to help me out) was there when I broke. And I'm so thankful. My co-workers are really amazing and have been giving me fantastic support. But the whole meltdown helped me to learn a little bit more about how I manage my own emotions. I've always known that I handle anger like a volcano---it bubbles and stews and then eventually erupts all over everything. But today I learned that I handle other emotions that same way. I had never let the cancer really get to me. I hadn't cried. I played the strong one all the time. And today I just reached a point where I had been strong for so long that I couldn't carry any more. And when one more challenge showed up on my desk I just lost it. All the tears that I've been holding back came out. With the help of my co-workers I put myself back together and finished the work day (and finished some of the big projects that had been weighing heavily on me). But I'm going to have to be careful about this one in the future to make sure I don't lose it in a situation that isn't as acceptable as today's being alone in the office with a co-worker who is also a friend.
When I arrived at home after this very long, tiresome week of work I was greeted by mail from my health insurance company. I know I'm very blessed to have good health insurance. Today's mail was the second half of the claim processed for my excision biopsy. With the surgeon's fee, the operating room, the anesthesia, pre-surgical tests, and post-surgical biopsy....the whole excision biopsy experience without insurance would have cost close to $8,000. Thankfully, with my insurance it's only going to cost me a small fraction of that out of pocket. But this is just the cost to FIND the cancer. The bills and claims for the treatment are still to come. And they're going to be much, much worse. I'm quite grateful that my insurance has an out-of-pocket annual maximum that is a manageable amount for me. I'm sure to hit that cap within the next month or two. I really feel for anyone who would have to go through this without quality health insurance coverage. But my "let's socialize healthcare" rant can wait for another time.
For now, I'll just accept that today was one of those bad days I've heard were coming. Tomorrow will be a better and brighter and much better-rested day. And I'll continue on...strong once again.
This was my first full week back at work since my diagnosis, which now seems like forever ago even though it was only a few weeks. In retrospect, I really should have taken one more day after my lumpectomy before returning to work. I only took two days off for that procedure and the recovery because it's a tough time of year for me at work. One more day (a Friday) would have given me a 5 day period for the surgery and recovery, which would have been a good idea. Instead I went back to work on a Friday and I feel like I've never really caught up on the rest that procedure really required. But I have learned my lesson and promise to allow myself to rest when I need it in the future.
Yesterday I met with my oncologist for the first time. I really like him. He's personable and amusing, which I like in a health care professional. It helps to put me at ease in an otherwise uneasy situation. The appointment basically served to lay out my path for my treatment. I'm set up to start radiation at the end of this month. I learned from the oncologist that radiation has the potential to weaken my bones. I already take a daily calcium supplement because I'm kind of paranoid about becoming a stooped over old lady with osteoporosis in the future. Now, I have extra reason to fret over that. On Monday I'll have a Dexa Scan done to measure my bone density. The doctor wants to have a baseline measurement so we know if the radiation is causing me any damage. Fun, huh? And the next step in my treatment after that is tamoxifen. This drug has produced excellent results in reducing recurrence of cancer. It also will give me side effects that simulate menopause. Bring on the hot flashes and mood swings! And as an extra added bonus, when I finish my five years of tamoxifen it should be just in time for me to start my actual menopause. I hope my boyfriend Nick is ready for this. I may be hormonal and on my own personal tropical vacations for the next decade!
This was kind of a lot to swallow on top of everything else I've been going through. I'm way behind on my work and not feeling up to working beyond my normal day because I'm tired all the time. And today all the stress mounted to a point where I had a complete meltdown at work. I sat and cried in frustration because I just don't know how I'm going to handle everything. My co-worker Susanna (who is a goddess and has been taking on a lot of extra tasks to help me out) was there when I broke. And I'm so thankful. My co-workers are really amazing and have been giving me fantastic support. But the whole meltdown helped me to learn a little bit more about how I manage my own emotions. I've always known that I handle anger like a volcano---it bubbles and stews and then eventually erupts all over everything. But today I learned that I handle other emotions that same way. I had never let the cancer really get to me. I hadn't cried. I played the strong one all the time. And today I just reached a point where I had been strong for so long that I couldn't carry any more. And when one more challenge showed up on my desk I just lost it. All the tears that I've been holding back came out. With the help of my co-workers I put myself back together and finished the work day (and finished some of the big projects that had been weighing heavily on me). But I'm going to have to be careful about this one in the future to make sure I don't lose it in a situation that isn't as acceptable as today's being alone in the office with a co-worker who is also a friend.
When I arrived at home after this very long, tiresome week of work I was greeted by mail from my health insurance company. I know I'm very blessed to have good health insurance. Today's mail was the second half of the claim processed for my excision biopsy. With the surgeon's fee, the operating room, the anesthesia, pre-surgical tests, and post-surgical biopsy....the whole excision biopsy experience without insurance would have cost close to $8,000. Thankfully, with my insurance it's only going to cost me a small fraction of that out of pocket. But this is just the cost to FIND the cancer. The bills and claims for the treatment are still to come. And they're going to be much, much worse. I'm quite grateful that my insurance has an out-of-pocket annual maximum that is a manageable amount for me. I'm sure to hit that cap within the next month or two. I really feel for anyone who would have to go through this without quality health insurance coverage. But my "let's socialize healthcare" rant can wait for another time.
For now, I'll just accept that today was one of those bad days I've heard were coming. Tomorrow will be a better and brighter and much better-rested day. And I'll continue on...strong once again.
Tuesday, January 10, 2012
I'm in Great Company!
What do I have in common with these people?
We are all breast cancer SURVIVORS!
All the literature I have read states that when you have had your carcinoma surgically removed and the pathology report verifies the area is free of cancer, then you make the transition from cancer victim to cancer survivor. Today I received my pathology report verifying that the last of the cancer has been removed from my body. I have transitioned to survivor.
The next thing on my to do list is to take all the necessary steps (radiation and probably tamoxifen) to make sure that the cancer can't come back easily. It's still a long road ahead. But today I celebrate. I am beautiful, intelligent and talented, like the above women. But most of all, like these women I have long admired, I am STRONG and I am a SURVIVOR!!!!!
We are all breast cancer SURVIVORS!
All the literature I have read states that when you have had your carcinoma surgically removed and the pathology report verifies the area is free of cancer, then you make the transition from cancer victim to cancer survivor. Today I received my pathology report verifying that the last of the cancer has been removed from my body. I have transitioned to survivor.
The next thing on my to do list is to take all the necessary steps (radiation and probably tamoxifen) to make sure that the cancer can't come back easily. It's still a long road ahead. But today I celebrate. I am beautiful, intelligent and talented, like the above women. But most of all, like these women I have long admired, I am STRONG and I am a SURVIVOR!!!!!
Saturday, January 7, 2012
The True Cost of Much Less Than a Pound of Flesh
When I removed the bandage from my lumpectomy I nearly passed out in the shower. Not because it hurt. But because of what I saw. No blood. No infection. But I had to deal suddenly with the realization that my breast now has a different shape. Where there was once a curve, there is now a flat spot. It's not a huge change. As long as I'm wearing a bra or a good quality swimsuit no one will be able to tell. But I know.
I knew that having some flesh removed from my breast was going to change the shape of it. It's logical. This breast was already far from perfect to start with. I already have a large keloid scar on a different part of the breast from having a benign cyst removed several years ago. And for some reason the old scar doesn't bother me near as much as this new dent.
I think the issue is that this cancer thing has now officially taken something from me. The Big C has robbed me of the shape of my breast. It's a small flat spot. It shouldn't bother me. Most women with breast cancer lose much larger areas of their breast, if not the entire breast. I'm fortunate to escape with just a flat spot. Yet at the same time...I feel like this was cancer's small victory. And I don't want cancer to be victorious over me in any way.
I expect that in more time, the flat spot won't bother me any more. It won't be cancer's victory over me. It'll be my badge of honor of my victory over cancer. I guess everything takes a little time to process fully. From what I read I can expect my flat spot to become a bit more pronounced as I progress through radiation therapy. I'll get used to it. I'll likely even forget about it most of the time. Someday. But not just yet.
I knew that having some flesh removed from my breast was going to change the shape of it. It's logical. This breast was already far from perfect to start with. I already have a large keloid scar on a different part of the breast from having a benign cyst removed several years ago. And for some reason the old scar doesn't bother me near as much as this new dent.
I think the issue is that this cancer thing has now officially taken something from me. The Big C has robbed me of the shape of my breast. It's a small flat spot. It shouldn't bother me. Most women with breast cancer lose much larger areas of their breast, if not the entire breast. I'm fortunate to escape with just a flat spot. Yet at the same time...I feel like this was cancer's small victory. And I don't want cancer to be victorious over me in any way.
I expect that in more time, the flat spot won't bother me any more. It won't be cancer's victory over me. It'll be my badge of honor of my victory over cancer. I guess everything takes a little time to process fully. From what I read I can expect my flat spot to become a bit more pronounced as I progress through radiation therapy. I'll get used to it. I'll likely even forget about it most of the time. Someday. But not just yet.
Thursday, January 5, 2012
Friends
I'm tired today. And sore. Much more sore than after the excision biopsy. But the overall pain is quite minimal. I'm really lucky.
Lucky...that's what I'm really here to talk about today. I am truly overwhelmed at the outpouring of love and support that I have received from my friends. Maybe I've been playing the karma game well. Maybe I'm nicer to people than I thought I was. But whatever the reason....my friends are amazing. Little things like a "like" or a comment on Facebook are really hitting my heart right now. A text. An email. Friends who post on their own FB wall in my support (Heather Shinpaugh and Willie Kelty) or who dig up a picture of the Disney Princesses with bald heads (Matt Gallo) have really bowled me over.
And I mustn't forget the "singing email" from Bryden McGarry. I feel so amazingly loved. Knowing that my friends are by my side no matter what just makes everything seem so much easier.
And I need to give an extra big thanks to my boyfriend Nick Starks. He has been taking good care of me...driving me around, feeding me good meals, making sure I don't lift things I shouldn't, bringing me a cat to love on when Sumo won't come on his own....the list is endless. When Nick and I got (back) together (after a twenty years or so hiatus) I warned him that breast cancer was likely a part of my future. He said it didn't scare him. Scars didn't make me less attractive, and a mastectomy (should it ever come to that) wouldn't either. We would deal with the Big C if and when it ever became a factor. We didn't expect that it would be a large part of our lives only a year and a half later. But it is. He's a trooper. And I know this wouldn't be near as easy to handle without him. The thought of going through this alone...well I don't even want to think about it. I'm sure I could do it. But I don't have to. Nick is here. And he's going to be with me throughout. And I'm lucky.
Lucky...that's what I'm really here to talk about today. I am truly overwhelmed at the outpouring of love and support that I have received from my friends. Maybe I've been playing the karma game well. Maybe I'm nicer to people than I thought I was. But whatever the reason....my friends are amazing. Little things like a "like" or a comment on Facebook are really hitting my heart right now. A text. An email. Friends who post on their own FB wall in my support (Heather Shinpaugh and Willie Kelty) or who dig up a picture of the Disney Princesses with bald heads (Matt Gallo) have really bowled me over.
And I mustn't forget the "singing email" from Bryden McGarry. I feel so amazingly loved. Knowing that my friends are by my side no matter what just makes everything seem so much easier.
And I need to give an extra big thanks to my boyfriend Nick Starks. He has been taking good care of me...driving me around, feeding me good meals, making sure I don't lift things I shouldn't, bringing me a cat to love on when Sumo won't come on his own....the list is endless. When Nick and I got (back) together (after a twenty years or so hiatus) I warned him that breast cancer was likely a part of my future. He said it didn't scare him. Scars didn't make me less attractive, and a mastectomy (should it ever come to that) wouldn't either. We would deal with the Big C if and when it ever became a factor. We didn't expect that it would be a large part of our lives only a year and a half later. But it is. He's a trooper. And I know this wouldn't be near as easy to handle without him. The thought of going through this alone...well I don't even want to think about it. I'm sure I could do it. But I don't have to. Nick is here. And he's going to be with me throughout. And I'm lucky.
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