That it was a bad poll.
After posting that poll about 24 hours ago, this blog had 225 page views and I received 13 votes in the poll (less than 6%), one of them being Paul who was helping me by testing out whether the poll worked. And my Facebook link to the blog post had 0 comments and 0 likes, when they usually are in the double digits.
So now I know that people like us are not so good at making decisions like this. Time to refer back to the doctors.
I did get some good ideas of questions to ask Dr. Alpert tomorrow based on some of your comments. Thank you for being here for me, friends! I'll let you know what she says and the final decision as soon as I make it.
Wanna do a more fun poll now?
Thursday, August 16, 2012
Wednesday, August 15, 2012
Decisions
Again, I'm in a position where *I* have a decision to make about my treatment. I'm blogging tonight to help sort out my thoughts and ask for input if anyone has some (although I have spent many hours over the past few months consulting Google and still don't have the answers I want).
I'll start with the basics. The standard of care for someone with my breast cancer is to do the double mastectomy to get rid of the tumor first. Then the chemo is done to kill any cancer cells that were not attached to the tumor and may have escaped into my body. We've done that so far, and hopefully it's the most difficult part of my treatment.
Coming up, I'll receive radiation, meaning I will lay in a machine for a few minutes each day for six weeks while radioactive beams are directed towards the exact area where the tumor grew. That is supposed to kill any cells that are lingering in that area.
Finally, for the next five years, I will take a pill (Tamoxifen - a hormone) each day to block the estrogen in my body. That's because my cancer cells were found to really like estrogen, so we'll cut off the food source of any that may decide to grow in the future.
Sounds like we're covering all of the bases, right? I am not questioning any of this treatment, so big picture, everything will be done to ensure that I will never have to deal with breast cancer again.
My dilemma right now is the timing. Here's where I have to go back a few months to explain. Right after my mastectomy, I was definitely feeling the discomfort of having my breast tissue removed and these expanders (uncomfortable bags of saline) inserted in their place. Through March and April, I was swollen and the scars and skin were painful. I had a meeting with Dr. Baum, my plastic surgeon, and asked, "When will we take out the expanders and put in the softer silicon implants?" He responded by telling me that he'd optimally like to do that before the skin is radiated. Evidently, radiation will make my skin tough, less pliable, and more prone to infection. Sounded good to me.
I went ahead and asked Dr. Alpert, my radiation oncologist, and she said that it's sometimes done that way and she'd be fine with it. We'd just start radiation a few weeks after the silicon reconstruction, when my skin had healed a bit from that. Cool with me. Everyone was on board.
Then I had 4 months to think about this. During that time, my boobs started to heal. The swelling went down and I've gotten used to the expanders. (Instead of feeling like huge hockey pucks in my chest, they feel more like beanbags.) So I've been thinking, shouldn't I be worrying about cancer first? Shouldn't we be radiating that area where the cancer cells grew, like, right now?!? If I do the radiation first, I'd have to wait quite a while (six months?) for my skin to heal before Dr. Baum could do the silicon surgery, but I've lived with expanders now for 5 months, so I can keep them in. And my boobs might not be as even and pretty if the operation is after radiation, but I don't care about that.
By consulting the internet, it seems that most people (or at least most people who write about their experiences on the internet) have radiation after chemo and then the reconstruction is done later on. But there is not a medical site that I can find that gives the steps one should take and has medical reasons why things are done that way. So I had to wait to talk to a doctor.
Finally, on Monday of this week, I had my post-chemo visit with Dr. Kirshner, my medical oncologist. (Medical oncologists are the ones who decide on your drugs like AC, Taxol, and Tamoxifen, that hormone I mentioned above.) He started with, "You're done with chemo. I'm thinking we'll start radiation right after Labor Day." Quick calculation in my head told me that he was giving about a 5 week break between chemo and radiation. Since my lay-person's goal of right now was not on his schedule, I threw my questions at him. He, like Dr. Alpert, said, "Of course you can go do the reconstruction. A few extra weeks between chemo and radiation won't make a difference."
I started asking him for proof/numbers to reassure me that it truly doesn't make a difference. He said that he's sure there are no studies about the timing of starting radiation when it's just a few weeks. Anything out there would be about starting 6 months down the line or something. I said that if I could bump my survival chances up, even by a percentage point or two, I'd do the radiation first, and he said it really won't make a difference.
One reassuring thing he did say is that we will start the Tamoxifen right after Labor Day, regardless of whether I'm doing radiation then or not. So even if we are not radiating any lingering breast cancer cells, they will not be getting any estrogen, so they can't grow.
So here are the options:
Choice 1 - Get my perky little silicon boobies put in at the beginning of September, take Tamoxifen to make sure cancer cells don't grow, and start radiation when I heal, probably the beginning of October, about 2 months after chemo.
Choice 2 - Radiate my right breast/armpit starting at the beginning of September because we like to fight cancer and because most people do it that way, but not because I have any medical advice to do so. Then have the silicon implants put in sometime next spring.
Of course, I've done a pro/con list:
Okay, people who are still reading, what do you think? Up until now, the cry has been "Fight the cancer!" Is it time to not fight for a few weeks? Vote in the poll on the right side of my blog.
I'll start with the basics. The standard of care for someone with my breast cancer is to do the double mastectomy to get rid of the tumor first. Then the chemo is done to kill any cancer cells that were not attached to the tumor and may have escaped into my body. We've done that so far, and hopefully it's the most difficult part of my treatment.
Coming up, I'll receive radiation, meaning I will lay in a machine for a few minutes each day for six weeks while radioactive beams are directed towards the exact area where the tumor grew. That is supposed to kill any cells that are lingering in that area.
Finally, for the next five years, I will take a pill (Tamoxifen - a hormone) each day to block the estrogen in my body. That's because my cancer cells were found to really like estrogen, so we'll cut off the food source of any that may decide to grow in the future.
Sounds like we're covering all of the bases, right? I am not questioning any of this treatment, so big picture, everything will be done to ensure that I will never have to deal with breast cancer again.
My dilemma right now is the timing. Here's where I have to go back a few months to explain. Right after my mastectomy, I was definitely feeling the discomfort of having my breast tissue removed and these expanders (uncomfortable bags of saline) inserted in their place. Through March and April, I was swollen and the scars and skin were painful. I had a meeting with Dr. Baum, my plastic surgeon, and asked, "When will we take out the expanders and put in the softer silicon implants?" He responded by telling me that he'd optimally like to do that before the skin is radiated. Evidently, radiation will make my skin tough, less pliable, and more prone to infection. Sounded good to me.
I went ahead and asked Dr. Alpert, my radiation oncologist, and she said that it's sometimes done that way and she'd be fine with it. We'd just start radiation a few weeks after the silicon reconstruction, when my skin had healed a bit from that. Cool with me. Everyone was on board.
Then I had 4 months to think about this. During that time, my boobs started to heal. The swelling went down and I've gotten used to the expanders. (Instead of feeling like huge hockey pucks in my chest, they feel more like beanbags.) So I've been thinking, shouldn't I be worrying about cancer first? Shouldn't we be radiating that area where the cancer cells grew, like, right now?!? If I do the radiation first, I'd have to wait quite a while (six months?) for my skin to heal before Dr. Baum could do the silicon surgery, but I've lived with expanders now for 5 months, so I can keep them in. And my boobs might not be as even and pretty if the operation is after radiation, but I don't care about that.
By consulting the internet, it seems that most people (or at least most people who write about their experiences on the internet) have radiation after chemo and then the reconstruction is done later on. But there is not a medical site that I can find that gives the steps one should take and has medical reasons why things are done that way. So I had to wait to talk to a doctor.
Finally, on Monday of this week, I had my post-chemo visit with Dr. Kirshner, my medical oncologist. (Medical oncologists are the ones who decide on your drugs like AC, Taxol, and Tamoxifen, that hormone I mentioned above.) He started with, "You're done with chemo. I'm thinking we'll start radiation right after Labor Day." Quick calculation in my head told me that he was giving about a 5 week break between chemo and radiation. Since my lay-person's goal of right now was not on his schedule, I threw my questions at him. He, like Dr. Alpert, said, "Of course you can go do the reconstruction. A few extra weeks between chemo and radiation won't make a difference."
I started asking him for proof/numbers to reassure me that it truly doesn't make a difference. He said that he's sure there are no studies about the timing of starting radiation when it's just a few weeks. Anything out there would be about starting 6 months down the line or something. I said that if I could bump my survival chances up, even by a percentage point or two, I'd do the radiation first, and he said it really won't make a difference.
One reassuring thing he did say is that we will start the Tamoxifen right after Labor Day, regardless of whether I'm doing radiation then or not. So even if we are not radiating any lingering breast cancer cells, they will not be getting any estrogen, so they can't grow.
So here are the options:
Choice 1 - Get my perky little silicon boobies put in at the beginning of September, take Tamoxifen to make sure cancer cells don't grow, and start radiation when I heal, probably the beginning of October, about 2 months after chemo.
Choice 2 - Radiate my right breast/armpit starting at the beginning of September because we like to fight cancer and because most people do it that way, but not because I have any medical advice to do so. Then have the silicon implants put in sometime next spring.
Of course, I've done a pro/con list:
For doing reconstructive surgery now:
- Will have hormone therapy going
- It'll be easier for Dr. Baum to operate and my recovery may be easier
- I can get everything done in 2012, nothing hanging over our head for 6 months (this is relevant not only for my sanity but because Maggie has been having some emotional/behavior issues that may be related to my being "sick")
- Would only delay the radiation for about 4 weeks
Against doing reconstructive surgery now:
- Would be delaying the "standard of care" by about 4 weeks
- Will have hormone therapy going
- It'll be easier for Dr. Baum to operate and my recovery may be easier
- I can get everything done in 2012, nothing hanging over our head for 6 months (this is relevant not only for my sanity but because Maggie has been having some emotional/behavior issues that may be related to my being "sick")
- Would only delay the radiation for about 4 weeks
Against doing reconstructive surgery now:
- Would be delaying the "standard of care" by about 4 weeks
One more thing. I have an appointment on Friday afternoon with Dr. Alpert (radiation oncologist) who may have more insight. Yes, she "okayed" the surgery back in March, but now I'll ask what she recommends and why.
Okay, people who are still reading, what do you think? Up until now, the cry has been "Fight the cancer!" Is it time to not fight for a few weeks? Vote in the poll on the right side of my blog.
Friday, August 3, 2012
The Last Chemo
It's August 3, that date I've mentioned once or twice around here. Though you are all so excited for me, I'm not there yet. From my perspective, chemo isn't over until the worst of the side effects have passed, so that'll be next week sometime. Even then, it's not like I get to walk away from this building forever knowing that cancer will never be back.
I'm a party pooper, huh? But let's talk about something a little off topic that is amazingly, life-changingly wonderful: The awesomeness of the health insurance plan provided by Syracuse Research Corporation (Paul's work).
Check out the bill from the double mastectomy's hospital stay:
I'm a party pooper, huh? But let's talk about something a little off topic that is amazingly, life-changingly wonderful: The awesomeness of the health insurance plan provided by Syracuse Research Corporation (Paul's work).
Check out the bill from the double mastectomy's hospital stay:
I giggle just looking at it. Keep in mind that this is just from the hospital. There were similar looking bills from the surgeons for their work that day.
Then, each of these days that I sit in the chemo chair, the drugs going into me and the expertise of the nurses cost literally thousands of dollars. I pay a $10 copay each week, no questions asked. I don't know the exact figures, but I have one example of what we're dealing with. A couple weeks ago we had to do my Neulasta shot at home (thanks to Linda, a neighbor who's a nurse who came over on a Saturday). Here's the prescription we picked up from Wegmans:
That's a $4600+ shot. The 10 day supply does not mean I got ten of them. It was ONE syringe that lasts 10 days in my body. I received 6 of these over the course of my chemo and paid $0.00 for all of them except for this one that we had to bring home.
Thank you Blue Cross/ Blue Sheild Excellus plan!!! (See, three exclamation points there.)
I KNOW that we're among the few lucky ones. Do a quick search for blogs of cancer patients, and many, many of them have had to make lifestyle changes or ask for help from friends and strangers due to insurance plans that are not as comprehensive. I'm not going to turn this into a political debate, so I'll stop there.
Speaking of blogs, if you didn't see on Facebook, some random website called Healthline.com found my blog and decided you are currently reading one of the Top Breast Cancer Blogs of 2012. My theory is that the author Googled "best breast cancer blogs" and the search found my title quite easily. However, I am listed first, so she must have liked it once she got here.
Since I'm speaking of blogs, I know that bloggers like to cross-reference with one another to get more readers. Although that's not the point of me writing (I just like to keep people informed), I've been given shout-out by other bloggers, so I'm going to do a little payback. My friend Chuck writes about things to do in Syracuse at syracusestateofmind.com. Another woman from Maggie's preschool was recently diagnosed with breast cancer, too (unfortunately proving the 1 in 8 theory, being that there are 14 kids in Maggie's class) and she's blogging at stupiddumbbreastcancer.blogspot.com. Finally, I just yesterday I checked out one of the other blogs on that Healthline list and emailed the writer because our diagnoses are very similar. She is adding me to her blogroll, and since I don't know what that is, I'll let you know that she blogs at http://www.darngoodlemonade.com/.
Finally, remember that picture on April 12? I'll leave you with the after photo of me right now. The IV pole isn't hooked up yet because they're running some extensive bloodwork (liver function, pregnancy test (HA!), etc), but that Taxol will be running soon.
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