I've always thought blogs were so self-indulgent. I mean, who needs to read the garbage floating around in my head every day? I admit that I read a few blogs here and there. I've found some of a political nature that interest me. I've read blogs of people's insane sex lives, I've seen travel logs and people who are passionate about some crazy hobby. They all get boring after awhile.
But they are a phenomena of our time. I wonder if in the future people will take as great an interest in old blogs as we do in old letters today. They are each a time capsule in their own right.
This blog really is a self-indulgent endeavor for me. It will probably contain lots of whining and excruciatingly painful discussions that will illustrate my poor capacity for quick decision making. When I'm happy or content, I don't feel as much of a need to write. When I am scared, troubled, or mad I feel the need to purge.
I do believe this cancer will be a journey that will change who I am. But I doubt I will unveil any enlightening philosophies or nuggets of wisdom that aren't already covered in the thousands of cancer books floating around in the universe. So many have gone before me.
I'm sure I may be disgusting at times (eeewww - your vomit was what color??) or boring at others (how many bald jokes can you stand?) So please read only what interests you and ignore the rest. I am trying to label posts that contain information from a doctor's visit or procedure, so if you are mostly interested in those details, you can click on those labels.
Otherwise.... indulge me.
Monday, March 31, 2008
Sunday, March 30, 2008
Re-Entry
We are back from the slopes and I guess tomorrow means re-entry into the real world again. The friends, sunshine and cool mountain air really were helpful for my anxiety. The mountains are so beautiful, the sky is unbelievably blue, and we had one fun day of hard snow. I had stretches of several hours at a time without thinking about cancer. I somehow thought that this vacation would give me time to contemplate treatment decisions in a relaxed manner and gather opinions from my friends, but in truth is was more of a distraction than anything. I am not much closer to any kind of decision about surgery. It's funny, as much as I was distracted during my vacation, I find it humorous how easily my mind wanders back to cancer. Some one might say “pass the salt, please” and I swear I heard “do you have metastases?” The brain is a strange thing….
I will have the second biopsy on Wednesday to gather more info (I need to double check that date!) My poor little boob is just now losing bruises from the previous procedure and the hematoma is still present. This biopsy will be MRI guided – which means another trip into that tiny tube I hate. (Deep breaths…) It sounds like quite a sophisticated procedure. They place you on your stomach with your breast hanging through a hole. They place some kind of grid around your breast and slide you into the MRI machine and take images. Then they slide you out of the MRI machine but you stay on the table with your breast nestled in the grid. They use the images from the MRI and the grid to show them where to insert the needle. All of this means you have to lie very still with your boob in a vise grip for about an hour. Not painful – just uncomfortable. Maybe I will get another valium :) And please – no hematoma this time!
If the biopsy is cancerous, then there won’t be a choice – I will have a mastectomy. If the biopsy is benign, I am back to making a choice between lumpectomy and mastectomy. I am still torn. It amazes me how quickly people jump to the conclusion of “cut them off - you don’t need them!” It just isn’t that simple and the medical evidence doesn’t support that. I still have a lot of decision making to do. Ugh. I am terrible at making decisions.
I have come to accept the idea of the chemo. From what I read, it just isn’t the horror that it used to be so many years ago. It isn’t fun, of course, but it sounds manageable. Losing the hair doesn’t freak me out too much… but still I’m not looking forward to it. The nausea scares me the most. I am a puker.
We have given Eli some basic facts about the cancer, but haven’t told him much. He is very protective of me and I wanted his spring break to be free of worry. We have talked about the surgical options openly in front of him, but I haven’t told him about the chemo yet. I think the chemo will scare him a bit so I am holding off until the next biopsy is complete. I am trying to unveil things to him one at a time so that he isn’t overwhelmed. When I told him I have cancer, he asked me if I was going to die. Gulp. I told him no. I said there are good kinds of cancer and bad kinds of cancer and that I have a good kind – it’s just going to take a lot of treatment to make it go away. All of the books I have read suggest that you be completely honest with kids, but I couldn’t find the words to tell him that there is maybe a 15% chance I won’t beat this disease. I just don’t think he needs to hear that at this time.
(By the way, I have to mention that Eli is a truly gifted skier and it is such a joy to see him fly down the mountain. He has skied a total of 4 weeks only in his entire life and he can handle just about anything the mountain has to offer – with the exception of a few extreme, double black diamond runs. Steepness, moguls, jumps, iciness… he handles it all. Skiing is truly his sport.)
So, distractions are over; back to reality tomorrow. It will be hard. Work looms, school goes on, the laundry still needs washing… and treatment decisions have to be made.
Thanks to everyone that encouraged me to go skiing and that sent good wishes while we were there. And thank you to all my friends that helped with the distraction during the trip: Mimi, Herman, Jane, Sean, Ruth, Mike, and Frank. It was a much needed vacation.
And of course, thank you to Ben and Eli for going with me and for waiting at the bottom of every hill for me to catch up:)
I will have the second biopsy on Wednesday to gather more info (I need to double check that date!) My poor little boob is just now losing bruises from the previous procedure and the hematoma is still present. This biopsy will be MRI guided – which means another trip into that tiny tube I hate. (Deep breaths…) It sounds like quite a sophisticated procedure. They place you on your stomach with your breast hanging through a hole. They place some kind of grid around your breast and slide you into the MRI machine and take images. Then they slide you out of the MRI machine but you stay on the table with your breast nestled in the grid. They use the images from the MRI and the grid to show them where to insert the needle. All of this means you have to lie very still with your boob in a vise grip for about an hour. Not painful – just uncomfortable. Maybe I will get another valium :) And please – no hematoma this time!
If the biopsy is cancerous, then there won’t be a choice – I will have a mastectomy. If the biopsy is benign, I am back to making a choice between lumpectomy and mastectomy. I am still torn. It amazes me how quickly people jump to the conclusion of “cut them off - you don’t need them!” It just isn’t that simple and the medical evidence doesn’t support that. I still have a lot of decision making to do. Ugh. I am terrible at making decisions.
I have come to accept the idea of the chemo. From what I read, it just isn’t the horror that it used to be so many years ago. It isn’t fun, of course, but it sounds manageable. Losing the hair doesn’t freak me out too much… but still I’m not looking forward to it. The nausea scares me the most. I am a puker.
We have given Eli some basic facts about the cancer, but haven’t told him much. He is very protective of me and I wanted his spring break to be free of worry. We have talked about the surgical options openly in front of him, but I haven’t told him about the chemo yet. I think the chemo will scare him a bit so I am holding off until the next biopsy is complete. I am trying to unveil things to him one at a time so that he isn’t overwhelmed. When I told him I have cancer, he asked me if I was going to die. Gulp. I told him no. I said there are good kinds of cancer and bad kinds of cancer and that I have a good kind – it’s just going to take a lot of treatment to make it go away. All of the books I have read suggest that you be completely honest with kids, but I couldn’t find the words to tell him that there is maybe a 15% chance I won’t beat this disease. I just don’t think he needs to hear that at this time.
(By the way, I have to mention that Eli is a truly gifted skier and it is such a joy to see him fly down the mountain. He has skied a total of 4 weeks only in his entire life and he can handle just about anything the mountain has to offer – with the exception of a few extreme, double black diamond runs. Steepness, moguls, jumps, iciness… he handles it all. Skiing is truly his sport.)
So, distractions are over; back to reality tomorrow. It will be hard. Work looms, school goes on, the laundry still needs washing… and treatment decisions have to be made.
Thanks to everyone that encouraged me to go skiing and that sent good wishes while we were there. And thank you to all my friends that helped with the distraction during the trip: Mimi, Herman, Jane, Sean, Ruth, Mike, and Frank. It was a much needed vacation.
And of course, thank you to Ben and Eli for going with me and for waiting at the bottom of every hill for me to catch up:)
Tuesday, March 25, 2008
Saturday, March 22, 2008
99 Words for Boobs
A little song for you.
NOT suitable for office viewing:)
NOT suitable for office viewing:)
(Sorry - you must endure a little commercial first.)
Friday, March 21, 2008
Finding the Path Again
I spent yesterday trying to decide what to do about the genetic testing. I called both my surgeon and my oncologist to ask for their opinions. I am very pleased to report that they both called me back within a few hours. They even conferred with each other!
They both agree that waiting on the gene test is too long to wait. My surgeon suggested we stick with the original plan for now. He feels like the second area in my breast identified by the MRI is nothing. He suggested I do the biopsy and get some real answers before I make up my mind about a mastectomy. In a very nice way, he told me to calm down. He feels I am at a very low risk of having the breast cancer gene but that getting the test is a good idea. We just don't need to wait on those results. He was very thorough in his questioning and responding to me.
As I said before, I was very pleased with my ability to reach both doctors with my questions. It is good to know that they will be available for me through out this process.
I have to say that I do feel more inclined to want a mastectomy now, but I will have the biopsy (ugh) and get some answers before I fully decide. I went ahead and had blood drawn for the breast cancer gene test, so that process has begun. I absolutely will not proceed with a double mastectomy without knowing the results of the gene test. The numbers simply do not support bilateral mastectomy otherwise. There is a .5% - 1% chance cancer will develop in the other breast if you do not have the gene mutation. Cutting off a breast for a 1% chance seems stupid to me. I am happy with a 99% chance for success.
If the gene test should come back positive... I guess I'd be looking at another surgery (or more - because I'd probably have my ovaries removed, too). For my sake, and for the sake of all the other women in my family, lets hope the gene test is negative.
We are leaving this afternoon to go skiing. I am going to try setting some of this angst aside and have some fun. I was so exhausted yesterday that I went to sleep at about 7:00 p.m. Woke up at 8 or so, had a sandwich, said hello to Ben and Eli and went back to bed at 9:00. I slept through the night! All of that to say that I haven't finished packing yet so I better get to it! I'll have a computer with me in Colorado but don't know if I'll get a chance to post this next week.
They both agree that waiting on the gene test is too long to wait. My surgeon suggested we stick with the original plan for now. He feels like the second area in my breast identified by the MRI is nothing. He suggested I do the biopsy and get some real answers before I make up my mind about a mastectomy. In a very nice way, he told me to calm down. He feels I am at a very low risk of having the breast cancer gene but that getting the test is a good idea. We just don't need to wait on those results. He was very thorough in his questioning and responding to me.
As I said before, I was very pleased with my ability to reach both doctors with my questions. It is good to know that they will be available for me through out this process.
I have to say that I do feel more inclined to want a mastectomy now, but I will have the biopsy (ugh) and get some answers before I fully decide. I went ahead and had blood drawn for the breast cancer gene test, so that process has begun. I absolutely will not proceed with a double mastectomy without knowing the results of the gene test. The numbers simply do not support bilateral mastectomy otherwise. There is a .5% - 1% chance cancer will develop in the other breast if you do not have the gene mutation. Cutting off a breast for a 1% chance seems stupid to me. I am happy with a 99% chance for success.
If the gene test should come back positive... I guess I'd be looking at another surgery (or more - because I'd probably have my ovaries removed, too). For my sake, and for the sake of all the other women in my family, lets hope the gene test is negative.
We are leaving this afternoon to go skiing. I am going to try setting some of this angst aside and have some fun. I was so exhausted yesterday that I went to sleep at about 7:00 p.m. Woke up at 8 or so, had a sandwich, said hello to Ben and Eli and went back to bed at 9:00. I slept through the night! All of that to say that I haven't finished packing yet so I better get to it! I'll have a computer with me in Colorado but don't know if I'll get a chance to post this next week.
Thursday, March 20, 2008
Many Doctor Visits
Yesterday was a long, hard day. It was so complicated I’m not sure I can recapture it all. I started at the hospital at 9:45 in the morning and I didn’t leave until 5:45 p.m. It started with the MRI, and ended with a geneticist. In between, I saw the surgical oncologist and medical oncologist (the one that coordinates chemo).
The good news – the body scan doesn’t show any other spots. So there are no positive metastases that we can see. Some of the other news was not so good. The path report shows that my cancer is classified as “triple negative.” This means it is not estrogen receptive, progesterone receptive and it is HER-2 negative. This tumor responds to chemo only and is not affected by the other medications that are given to prevent reoccurrence. So I will definitely have to have 4 months worth of chemo. This type of tumor occurs in about 10% of women, it is more aggressive, and has a greater tendency to reoccur. My prognosis is still really good; there are simply fewer tools in the tool box to fight this “brand.”
The other bad news is that the MRI indicated another suspicious spot in the same breast. Due to a scheduling error, my surgeon did not have this information when I saw him. I left his office at noon thinking I was having a lumpectomy. The call came about 20 minutes after I left. They want to do another biopsy on the affected area. I haven’t spoken to my surgeon yet – but I am now thinking, let’s skip that second biopsy and go for a mastectomy. I don’t want to be worrying about additional spots developing into cancer! The story goes on….
At 2:00 I went to see the medical oncologist, Dr. Laura Hutchins. She is the one that will oversee my chemo. She is the chair of the oncology dept. at UAMS and I liked her very much. We discussed some different options regarding chemo, including one study suggesting that women with triple negative tumors respond better when having chemo before surgery. We didn’t make any decisions, but she gave me several options to consider.
As we began to discuss my family history some more, she suggested I have the test that determines whether or not I have one of the two identified cancer genes. Knowing you have the gene means you have a 40% chance of developing cancer in the other breast! That’s huge! If I have the gene, I would probably want to have a bilateral mastectomy (meaning both breasts) to significantly lower my risk. Suddenly – I’ve gone from a simple lumpectomy on one breast to talking about a double mastectomy with reconstruction! The gene is also associated with a large increase in risk of ovarian cancer – and I still have my ovaries. This is a lot of information to process.
She sent us upstairs to talk with a genetics counselor. Loooong story short – the geneticist says I am at medium to high risk for having the gene but that he would like to see me have the test – not only for my own benefit, but for all the other women in my extended family. Because my sister and I were both young at diagnosis (her at 40, me at 45) there’s a possibility we have the gene. Here’s the kicker – the test is $3,100, it’s very iffy whether insurance will pay… and it takes 4-6 weeks to get results!
So here are the questions I face:
Can I wait 4-6 weeks for results? Is that risky with my agressive type of cancer? If I have the gene, I would much rather have one surgery to remove both breasts than to have one surgery now and one later. I'd like to wait on results.
Do I try to wait for a pre-certification from insurance for the test, or pay for it out of pocket and pray they will reimburse us? We are sure to have many expenses from my illness over this next year. We need to spend wisely. Is this test necessary now?
Do I forget the test for the moment and just move forward with a plan on the existing problem breast?
Do I bother with a biopsy on the second suspicious area or do I say forget the biopsy, forget the lumpectomy – take the whole breast?
And then there are all the reconstruction options that I haven’t even begun to consider. I need to see a plastic surgeon… or two.
We leave on vacation tomorrow. If I am going to have the gene test, I need to decide today and take advantage of this week when nothing else is happening. I will be trying to talk to both my surgeon and my oncologist today to get their opinions. I will also be exploring options to expedite the test. Two different friends, an oncologist and a pathologist that live in other states, both thought results came quicker in their state. They are going to check it out and let me know today.
Just when I thought I had a handle on things, it all got much more complicated. I am devestated at the idea of a bilateral mastectomy. My mind has not wrapped around that process yet. And the triple negative thing certainly adds worry. All in all, the prognosis is still great and I suppose it is good to have lots of options. This just wasn't the news I was hoping for.
The good news – the body scan doesn’t show any other spots. So there are no positive metastases that we can see. Some of the other news was not so good. The path report shows that my cancer is classified as “triple negative.” This means it is not estrogen receptive, progesterone receptive and it is HER-2 negative. This tumor responds to chemo only and is not affected by the other medications that are given to prevent reoccurrence. So I will definitely have to have 4 months worth of chemo. This type of tumor occurs in about 10% of women, it is more aggressive, and has a greater tendency to reoccur. My prognosis is still really good; there are simply fewer tools in the tool box to fight this “brand.”
The other bad news is that the MRI indicated another suspicious spot in the same breast. Due to a scheduling error, my surgeon did not have this information when I saw him. I left his office at noon thinking I was having a lumpectomy. The call came about 20 minutes after I left. They want to do another biopsy on the affected area. I haven’t spoken to my surgeon yet – but I am now thinking, let’s skip that second biopsy and go for a mastectomy. I don’t want to be worrying about additional spots developing into cancer! The story goes on….
At 2:00 I went to see the medical oncologist, Dr. Laura Hutchins. She is the one that will oversee my chemo. She is the chair of the oncology dept. at UAMS and I liked her very much. We discussed some different options regarding chemo, including one study suggesting that women with triple negative tumors respond better when having chemo before surgery. We didn’t make any decisions, but she gave me several options to consider.
As we began to discuss my family history some more, she suggested I have the test that determines whether or not I have one of the two identified cancer genes. Knowing you have the gene means you have a 40% chance of developing cancer in the other breast! That’s huge! If I have the gene, I would probably want to have a bilateral mastectomy (meaning both breasts) to significantly lower my risk. Suddenly – I’ve gone from a simple lumpectomy on one breast to talking about a double mastectomy with reconstruction! The gene is also associated with a large increase in risk of ovarian cancer – and I still have my ovaries. This is a lot of information to process.
She sent us upstairs to talk with a genetics counselor. Loooong story short – the geneticist says I am at medium to high risk for having the gene but that he would like to see me have the test – not only for my own benefit, but for all the other women in my extended family. Because my sister and I were both young at diagnosis (her at 40, me at 45) there’s a possibility we have the gene. Here’s the kicker – the test is $3,100, it’s very iffy whether insurance will pay… and it takes 4-6 weeks to get results!
So here are the questions I face:
Can I wait 4-6 weeks for results? Is that risky with my agressive type of cancer? If I have the gene, I would much rather have one surgery to remove both breasts than to have one surgery now and one later. I'd like to wait on results.
Do I try to wait for a pre-certification from insurance for the test, or pay for it out of pocket and pray they will reimburse us? We are sure to have many expenses from my illness over this next year. We need to spend wisely. Is this test necessary now?
Do I forget the test for the moment and just move forward with a plan on the existing problem breast?
Do I bother with a biopsy on the second suspicious area or do I say forget the biopsy, forget the lumpectomy – take the whole breast?
And then there are all the reconstruction options that I haven’t even begun to consider. I need to see a plastic surgeon… or two.
We leave on vacation tomorrow. If I am going to have the gene test, I need to decide today and take advantage of this week when nothing else is happening. I will be trying to talk to both my surgeon and my oncologist today to get their opinions. I will also be exploring options to expedite the test. Two different friends, an oncologist and a pathologist that live in other states, both thought results came quicker in their state. They are going to check it out and let me know today.
Just when I thought I had a handle on things, it all got much more complicated. I am devestated at the idea of a bilateral mastectomy. My mind has not wrapped around that process yet. And the triple negative thing certainly adds worry. All in all, the prognosis is still great and I suppose it is good to have lots of options. This just wasn't the news I was hoping for.
Tuesday, March 18, 2008
The Best Advice I've Seen So Far
In the face of uncertainty, worry, and fear, here's some good news: once you gain more and more information about your diagnosis, the easier it gets. The waiting really is the hardest part. Knowing what lies ahead will give you some control over your path.
Be strong, be weak, be a crazy person -- it's all necessary as you fight and recover and heal.
You may not know it now, but you will become the toughest person you know.
In time, you will encounter far more good than bad from this experience. Just be on the lookout, and you'll see.
Reading is good (Dr. Susan Love's Breast Book is the bible on breast cancer) but it can be scary too, especially on the Internet. Be careful.
Be an advocate for your own health. If something doesn't feel right, it probably isn't -- so pursue it until it does feel right.
Be strong, be weak, be a crazy person -- it's all necessary as you fight and recover and heal.
You may not know it now, but you will become the toughest person you know.
In time, you will encounter far more good than bad from this experience. Just be on the lookout, and you'll see.
Reading is good (Dr. Susan Love's Breast Book is the bible on breast cancer) but it can be scary too, especially on the Internet. Be careful.
Be an advocate for your own health. If something doesn't feel right, it probably isn't -- so pursue it until it does feel right.
Anxiety and Indecision
Wednesday is the MRI and then a visit with the doctor. I am anxious to get the results of the PET Scan so that we can begin ruling out the thought of any metastases. I am also anxious to get my hands on the path report from the biopsy and to begin making a plan of attack.
I've been reading a lot of books and talking to a lot of survivors. I am uncertain at this point which procedure would be best for me: lumpectomy or mastectomy with reconstruction. Both have their pros and cons.
The lumpectomy is a smaller surgery and leaves me with my natural breast. It also leaves me with a nice scar and maybe a dent that will probably be visible much of the time due to it's location on my chest. It also means a course of radiation which can cause scar tissue to develop in the breast and leave you asymmetrical. Not to mention the fatigue factor and the burning of your skin.
The mastectomy is a bigger surgery but eliminates radiation and the visible scar. The reconstructed breast (which may require additional surgery) won't have much feeling in it, but it will have a nice shape. The whole idea of constructing a nipple is a little weird, but it can be done with fairly decent cosmetic results. There is also a procedure known as a nipple sparing mastectomy that leaves the nipple in place, but it is more controversial.
I guess I don't really have enough information to make a decision yet. I'm hoping tomorrow will give me a few answers. I also think I will have a consultation with a plastic surgeon to see if he can offer any alternatives. I wish the lump was in a less prominent position. I would just go with the lumpectomy and be done with it.
I've been reading a lot of books and talking to a lot of survivors. I am uncertain at this point which procedure would be best for me: lumpectomy or mastectomy with reconstruction. Both have their pros and cons.
The lumpectomy is a smaller surgery and leaves me with my natural breast. It also leaves me with a nice scar and maybe a dent that will probably be visible much of the time due to it's location on my chest. It also means a course of radiation which can cause scar tissue to develop in the breast and leave you asymmetrical. Not to mention the fatigue factor and the burning of your skin.
The mastectomy is a bigger surgery but eliminates radiation and the visible scar. The reconstructed breast (which may require additional surgery) won't have much feeling in it, but it will have a nice shape. The whole idea of constructing a nipple is a little weird, but it can be done with fairly decent cosmetic results. There is also a procedure known as a nipple sparing mastectomy that leaves the nipple in place, but it is more controversial.
I guess I don't really have enough information to make a decision yet. I'm hoping tomorrow will give me a few answers. I also think I will have a consultation with a plastic surgeon to see if he can offer any alternatives. I wish the lump was in a less prominent position. I would just go with the lumpectomy and be done with it.
Sunday, March 16, 2008
Shout Out
I have to say a BIG THANK YOU to all of my colleagues that were in Baltimore this past week. Your phone calls and cards made me feel great. I think one of the reasons I was in such a funk last Monday is because I was mad that I was missing all the fun in Baltimore! (Can't believe I missed cognac and poetry recitation at Edgar Allen Poe's grave site!)
All of the people associated with the Alliance of Children's Trust Funds are such smart, nurturing, and witty people. I enjoy every one's company immensely. So thanks for making me part of the action through the phone calls and notes. I will be working on a poem for the next time we are together. I don't know any Poe so I'm thinking of reciting the Jabberwocky or maybe the Cremation of Sam McGee...
All of the people associated with the Alliance of Children's Trust Funds are such smart, nurturing, and witty people. I enjoy every one's company immensely. So thanks for making me part of the action through the phone calls and notes. I will be working on a poem for the next time we are together. I don't know any Poe so I'm thinking of reciting the Jabberwocky or maybe the Cremation of Sam McGee...
Friday, March 14, 2008
Sedatives are Good
Oh good grief! The PET CT was a piece of cake. They insisted that I take a valium - not for anxiety but because it relaxes the muscles in the chest wall... and something to do with "brown fat"? - whatever that is. Anyway, I took it and I'm glad.
After they injected me with the radioactive "dye" (I know it's not really dye) I had to wait TWO hours before they could do the scan. I got to sit in a private room in a big recliner and it was fine. The valium kicked in quickly so reading was out of the question. I put on my ipod and blasted the Phantom of the Opera and then later some Joni Mitchell. I decided that Joni Mitchell and valium go together nicely!
I snoozed off and on for the whole two hours which I realize makes me a pretty cheap date. I only had 5 mgs of valium and I felt pretty loopy. It kind of surprised me that no one even checked on me once in those two hours. Not that I needed anything... but still.
I was happy to see that the scanner is nothing like the MRI machine. The tube is not long enough to hold your entire body, so some portion of you is always sticking out. No claustrophobic feelings at all. I guess the valium really did help cause I fell asleep in the machine after about 10 minutes!!! It was very peaceful and quiet in there and they covered me up with a heated blanket. I slept like a baby through the whole thing. Time passes pretty quickly when you're snoozing!
So... one scan down and one more to go next week. I think I'll ask them for a valium :)
After they injected me with the radioactive "dye" (I know it's not really dye) I had to wait TWO hours before they could do the scan. I got to sit in a private room in a big recliner and it was fine. The valium kicked in quickly so reading was out of the question. I put on my ipod and blasted the Phantom of the Opera and then later some Joni Mitchell. I decided that Joni Mitchell and valium go together nicely!
I snoozed off and on for the whole two hours which I realize makes me a pretty cheap date. I only had 5 mgs of valium and I felt pretty loopy. It kind of surprised me that no one even checked on me once in those two hours. Not that I needed anything... but still.
I was happy to see that the scanner is nothing like the MRI machine. The tube is not long enough to hold your entire body, so some portion of you is always sticking out. No claustrophobic feelings at all. I guess the valium really did help cause I fell asleep in the machine after about 10 minutes!!! It was very peaceful and quiet in there and they covered me up with a heated blanket. I slept like a baby through the whole thing. Time passes pretty quickly when you're snoozing!
So... one scan down and one more to go next week. I think I'll ask them for a valium :)
Tuesday, March 11, 2008
One At A Time
I do feel better today. I think I was on information overload yesterday. I read too many web pages, looked at too many books, too many photos. Thanks to my staff for providing hugs and distraction when I couldn't stop the tears from forming. I realized there is a balance between gathering necessary information and scaring yourself with every possible bad outcome or side effect. In some ways, I just have to deal with things as they come instead of worrying about every eventuality. I need to remember that I can only do this one step at a time.
So... PET CT scan is this Friday. Spent some time talking to my dear friend, Sean, who started as a PET scan technologist many years ago and now oversees radiation compliance for the entire hospital (or something like that - in other words VERY experienced.) He gave me some tips to get better results and to avoid the possibility of false positives on the scan. Who needs any unnecessary scares at this point, right? I am a little anxious about my claustrophobia kicking in, but I've had an MRI before and I was able to control it then. I have to remember not to clench my fists, which I have a tendency to do when I am anxious. I could take a little sedative, but somehow, being in full control seems better. I'll post the full experience after it's done.
Thank you, Sean, for taking the time to talk me through it all and to remind me that a scar is a small price to pay for being cancer free.
So... PET CT scan is this Friday. Spent some time talking to my dear friend, Sean, who started as a PET scan technologist many years ago and now oversees radiation compliance for the entire hospital (or something like that - in other words VERY experienced.) He gave me some tips to get better results and to avoid the possibility of false positives on the scan. Who needs any unnecessary scares at this point, right? I am a little anxious about my claustrophobia kicking in, but I've had an MRI before and I was able to control it then. I have to remember not to clench my fists, which I have a tendency to do when I am anxious. I could take a little sedative, but somehow, being in full control seems better. I'll post the full experience after it's done.
Thank you, Sean, for taking the time to talk me through it all and to remind me that a scar is a small price to pay for being cancer free.
Monday, March 10, 2008
Titty Pity Party
Today I have lost some of my strength and optimism. I don't want to do this. I don't want to have breast cancer. Even the lumpectomy sounds bad to me right now. I don't want a three inch scar across my chest; I have strapless dresses and swimsuits still to wear! And I don't want radiation to harden my breast and make me asymmetrical. Nor do I want chemo that makes me sick. Blah to all of it.
Okay - I know. How stupidly vain is it to worry about a three inch scar and asymmetrical breasts when we are talking about my life? I should be thrilled with the idea of a lumpectomy. I'm just having a titty pity party, that's all.
Tomorrow will be better.
Okay - I know. How stupidly vain is it to worry about a three inch scar and asymmetrical breasts when we are talking about my life? I should be thrilled with the idea of a lumpectomy. I'm just having a titty pity party, that's all.
Tomorrow will be better.
Saturday, March 8, 2008
15 Minutes
This period has to be one of the hardest parts. The waiting. I can't believe it's taking so long to complete the initial screening tests and make a plan. I'm ready to move forward. Today. I can't go more than about 15 minutes with out the cancer thoughts returning to my head. I want to know what the plan is and start implementing it. I feel a bit like a pregnant woman; I want to nest. I feel like I should be doing something to get ready... at home and at work.
Concurrently, I feel paralyzed with indecision. I know I can't just put my life on hold - but at the same time I don't feel like I can make any dependable plans until I have more information. I am second guessing every decision. Should I go to Baltimore next week for work? Should I still take the time off from work to go skiing the last week in March? But it's smaller things, too. Should I buy this pair of pants - or am I gonna have weight fluctuations that make them unwearable? And it moves on into the absurd - Should I have chicken or beef enchiladas? I can't decide which would taste better to me. For whatever reason, all decisions are hard right now.
Concurrently, I feel paralyzed with indecision. I know I can't just put my life on hold - but at the same time I don't feel like I can make any dependable plans until I have more information. I am second guessing every decision. Should I go to Baltimore next week for work? Should I still take the time off from work to go skiing the last week in March? But it's smaller things, too. Should I buy this pair of pants - or am I gonna have weight fluctuations that make them unwearable? And it moves on into the absurd - Should I have chicken or beef enchiladas? I can't decide which would taste better to me. For whatever reason, all decisions are hard right now.
Friday, March 7, 2008
Leaving Comments
Several people have asked about how to leave comments for me. At the bottom of each post, you will see the word "comments." Click on that word and it will open a new window.
First, type your message to me. Then copy the funny letters that you see in the provided box (this is a security measure to stop spammers).
Next, chose an identity. If you have a Google ID you can use that or sign up for one. If not, check Name/URL. Enter your name or pen name. You can leave the URL blank.
If none of those options work, check Anonymous. If you choose Anonymous, please "sign" your message so I will know who you are. You can use a real name or a pen name. I won't reveal any pen names unless you tell me it's okay.
If you want to send me a private email, that's okay too. But I like the comments section because the blog is a record I can easily keep for awhile. And if you leave a comment, check back in a day or two. I may respond to your comment.... or some one else might comment on your comment! It's a fun way to have a discussion of sorts.
First, type your message to me. Then copy the funny letters that you see in the provided box (this is a security measure to stop spammers).
Next, chose an identity. If you have a Google ID you can use that or sign up for one. If not, check Name/URL. Enter your name or pen name. You can leave the URL blank.
If none of those options work, check Anonymous. If you choose Anonymous, please "sign" your message so I will know who you are. You can use a real name or a pen name. I won't reveal any pen names unless you tell me it's okay.
If you want to send me a private email, that's okay too. But I like the comments section because the blog is a record I can easily keep for awhile. And if you leave a comment, check back in a day or two. I may respond to your comment.... or some one else might comment on your comment! It's a fun way to have a discussion of sorts.
Fiddling Around
I'm trying out different looks for the blog. Don't be surprised if it looks different every time you check in.
Wednesday, March 5, 2008
Doctor Visit
Today I had my first visit with Dr. Westbrook, my oncologist. I have been seeing him for over 15 years so I have a lot of faith and confidence in him. I went to high school with both of his daughters and his grandson is in the same class in school as Eli. He was the first director of the Arkansas Cancer Research Center at UAMS.
The news was pretty good, as far as I am concerned. I will try to recount all that he said. There are more tests to be done, but at this point in time, he feels we will be able to do a lumpectomy versus a mastectomy - which is great news to me! We have scheduled a PET Scan for March 14th which will scan the rest of my body for any suspicious spots. I will then have an MRI on the 19th that will provide a closer look at both breasts. We are having to wait until my hematoma dissipates before we can do the MRI. We will make a decision about lumpectomy vs. mastectomy after those results are in.
On the day of the surgery - whether lumpectomy or mastectomy, they will inject a dye into the area of the mass and then scan to see which lymph node the dye drains in to. The affected lymph node will be removed and examined while I am on the operating table. If the lymph node is clean, they won't take any more. If there is cancer present, they will take all the lymph nodes.
A lumpectomy will most definitely be followed by radiation - 5 weeks worth, I think. The annoying part of radiation is that it happens 5 days a week for 5 weeks. And there are side effects that worry me... irritation and change in skin color, swelling of the breast, great fatigue. But most of what I read indicates that the side effects are manageable.
If there is cancer in the lymph nodes, I guess that is when chemo comes into play - 4 months worth. I am not clear if chemo will be suggested if the nodes are clean.
So far this all sounds manageable. I can do this. The idea of a lumpectomy makes me very happy. Multiple research shows there is absolutely NO DIFFERENCE in long term outcome of lumpectomy vs. mastectomy. They are the same result. I would much rather keep my breast (and especially my nipple!) if the outcome is the same. Wouldn't you?
The last thing the doctor said was that I could go skiing the last week of March. We can't schedule surgery before then and he is taking his grand kids to Acapulco the same week as our trip so he won't be in town! Still don't know if I can afford the time off from work... but at least it is an option now.
So, feeling positive today. Unless other spots show up on the scan, I think I'm going to be okay. This won't be easy - but also not as hard as I thought. I can do this.
The news was pretty good, as far as I am concerned. I will try to recount all that he said. There are more tests to be done, but at this point in time, he feels we will be able to do a lumpectomy versus a mastectomy - which is great news to me! We have scheduled a PET Scan for March 14th which will scan the rest of my body for any suspicious spots. I will then have an MRI on the 19th that will provide a closer look at both breasts. We are having to wait until my hematoma dissipates before we can do the MRI. We will make a decision about lumpectomy vs. mastectomy after those results are in.
On the day of the surgery - whether lumpectomy or mastectomy, they will inject a dye into the area of the mass and then scan to see which lymph node the dye drains in to. The affected lymph node will be removed and examined while I am on the operating table. If the lymph node is clean, they won't take any more. If there is cancer present, they will take all the lymph nodes.
A lumpectomy will most definitely be followed by radiation - 5 weeks worth, I think. The annoying part of radiation is that it happens 5 days a week for 5 weeks. And there are side effects that worry me... irritation and change in skin color, swelling of the breast, great fatigue. But most of what I read indicates that the side effects are manageable.
If there is cancer in the lymph nodes, I guess that is when chemo comes into play - 4 months worth. I am not clear if chemo will be suggested if the nodes are clean.
So far this all sounds manageable. I can do this. The idea of a lumpectomy makes me very happy. Multiple research shows there is absolutely NO DIFFERENCE in long term outcome of lumpectomy vs. mastectomy. They are the same result. I would much rather keep my breast (and especially my nipple!) if the outcome is the same. Wouldn't you?
The last thing the doctor said was that I could go skiing the last week of March. We can't schedule surgery before then and he is taking his grand kids to Acapulco the same week as our trip so he won't be in town! Still don't know if I can afford the time off from work... but at least it is an option now.
So, feeling positive today. Unless other spots show up on the scan, I think I'm going to be okay. This won't be easy - but also not as hard as I thought. I can do this.
Tuesday, March 4, 2008
Waiting
Like so many other women, it started with a lump. I'm pretty good about doing self exams, but I simply felt this one while soaping up in the shower. It took me two weeks to convince myself it was actually a lump... another week to make the appointment.
The radiology assistant who had been very chatty became suddenly quiet when she was performing the ultrasound on the lump. I could see the screen myself and I could see it was a solid mass. 7 millimeters.
The biopsy occurred about a week later on a Thursday. It was a fairly easy procedure, very little pain. I went by myself because Ben, my husband, was out of town. Within a few hours a large hematoma began to develop. The doctor had warned me of such an outcome. The mass is high on my chest wall, close to a lot of muscle and therefore close to a lot of blood vessels. The hematoma was painful and it was hard to move around. My breast turned black and blue - more black than blue.
The call came on the following Monday. It is cancer - infiltrating, ductal carcinoma grade 3. I don't understand what all that means yet, but I know grade 3 is the highest level. I am scheduled to meet with Dr. Westbrook on Weds. morning. He says he will order an MRI and a type of CT scan. There are other tests we will have to perform in order to stage the cancer. We won't make any decisions on Weds, we will simply talk.
Talking is good.
I put out a few emails to friends and co-workers informing them of the diagnosis. A flood of generous emails and phone call were quickly returned. The best way I know how to deal with all this is to reach out to my friends and family. I need their support and encouragement. I asked everyone to circle the wagons and shoot! It's time to fight.
I feel strong and capable of dealing with this. I am not scared - only dreadful of the process. This is a very curable disease if caught early, and I hope we have done that. I have no idea what all this will involve, but I know a lumpectomy or mastectomy will be first. I am fond of my boobs and don't like the idea of losing one - but what the heck - I'll just get another one! A newer, perkier one. And maybe I'll get the healthy one tightened up a bit to match! I've heard of one procedure where they take the fat from your stomach and use it to make a breast - so you get a tummy tuck to boot. And insurance pays!
I decided to start this blog as a way of keeping people updated on my progress. So many wonderful friends have asked to stay informed. The blog will allow everyone to stay informed on their own schedule and avoid overcrowding in your inbox. (I can be verbose, at times.) It will also allow me a place to vent. I named it Melon Wars.... for obvious reasons. I'll save that discussion for another day.
Feel free to leave me comments. I will try to post regularly.
The radiology assistant who had been very chatty became suddenly quiet when she was performing the ultrasound on the lump. I could see the screen myself and I could see it was a solid mass. 7 millimeters.
The biopsy occurred about a week later on a Thursday. It was a fairly easy procedure, very little pain. I went by myself because Ben, my husband, was out of town. Within a few hours a large hematoma began to develop. The doctor had warned me of such an outcome. The mass is high on my chest wall, close to a lot of muscle and therefore close to a lot of blood vessels. The hematoma was painful and it was hard to move around. My breast turned black and blue - more black than blue.
The call came on the following Monday. It is cancer - infiltrating, ductal carcinoma grade 3. I don't understand what all that means yet, but I know grade 3 is the highest level. I am scheduled to meet with Dr. Westbrook on Weds. morning. He says he will order an MRI and a type of CT scan. There are other tests we will have to perform in order to stage the cancer. We won't make any decisions on Weds, we will simply talk.
Talking is good.
I put out a few emails to friends and co-workers informing them of the diagnosis. A flood of generous emails and phone call were quickly returned. The best way I know how to deal with all this is to reach out to my friends and family. I need their support and encouragement. I asked everyone to circle the wagons and shoot! It's time to fight.
I feel strong and capable of dealing with this. I am not scared - only dreadful of the process. This is a very curable disease if caught early, and I hope we have done that. I have no idea what all this will involve, but I know a lumpectomy or mastectomy will be first. I am fond of my boobs and don't like the idea of losing one - but what the heck - I'll just get another one! A newer, perkier one. And maybe I'll get the healthy one tightened up a bit to match! I've heard of one procedure where they take the fat from your stomach and use it to make a breast - so you get a tummy tuck to boot. And insurance pays!
I decided to start this blog as a way of keeping people updated on my progress. So many wonderful friends have asked to stay informed. The blog will allow everyone to stay informed on their own schedule and avoid overcrowding in your inbox. (I can be verbose, at times.) It will also allow me a place to vent. I named it Melon Wars.... for obvious reasons. I'll save that discussion for another day.
Feel free to leave me comments. I will try to post regularly.
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