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.
Wednesday, July 25, 2012
Surviving
I have been thinking about this topic for a couple months now. The "Breast Cancer Survivor" topic. In short, I don't think I'll ever consider myself a breast cancer survivor.
For one, the breast cancer didn't do anything to me. It was there, but it didn't make me feel sick, didn't hurt, didn't change my appearance, didn't make me sad or scared. There it sat, just being there, for an indeterminate amount of time, probably years. My surviving through those years didn't take any effort on my part.
Also, by popular culture definition, a survivor can "outplay, outwit, outlast". Thus, I feel like even when I finish all of this treatment, I just won't know if I've survived cancer's whole game. Yes, the odds will be in my favor, but if one of those cancer cells has survived (outlasted the mastectomy, chemo, radiation, and hormone therapy) and it causes problems in the future (5, 10, or 30 years from now), can I really say that I won here in 2012?
The breast cancer treatment, however, has been my challenge. It has scared me, brought me to the hospital, lain me out in bed, made me nauseous for months, changed my ability to take care of the girls, and has made me look and feel different.
So here's my take: I'm a Breast Cancer Treatment Survivor. Keeping in mind that some of these might be TMI, here is some of what I've survived since February 24.
- A mammogram/ultrasound ending with the doctor saying, "Sit down."
- Navigating the network of different doctors one must consult for breast cancer, including Ob/Gyn, radiologist, general surgeon, plastic surgeon, medical oncologist, and radiation oncologist, each who have their own offices, schedulers, insurance files, and procedures.
- CT scan, bone scan, and numerous blood draws that will continue for the rest of my life.
- A major surgery (bilateral mastectomy), and then a minor one (port) a few weeks later.
- Adriamycin/cytoxan chemotherapy (4X) which caused miserable nausea and fatigue.
- Neulasta (6X), causing extreme bone pain.
- Colds every other week as my white blood cell counts dropped and then rose.
- Hair loss
- Taxol chemotherapy (4, going on 5X) which caused sharp pains and neuropathy.
- My first and second yeast infections. The first one was agonizing because I didn't know what is was and for over a week dismissed it as an uncomfortable side effect of chemo, letting it get worse and worse until I finally got the right treatment.
- Having to call a doctor for a refill on narcotic pain medication, which goes against everything I have ever believed about dealing with pain. "Tough it out, Shari," has changed to "Maybe Vicodin will help." (Don't worry, I didn't take any today and I'm okay.)
- Heartburn worse than anytime during pregnancy or even after 5¢ wing nights in college.
- Hair loss for a second time (Remember that little bit of hair I mentioned in my last post? It is just starting to lose its battle with the Taxol.)
- Weight gain due to steroids I take to prevent an allergic reaction to Taxol. I'd say I'm up about 8 pounds over the past month, mostly in my tummy, without changing my diet at all.
- Finding childcare for two preschoolers during everything. Believe it or not, this final item has been the hardest to survive of everything listed. We've had wonderful friends helping at every turn, but the actual leaving of the children because of breast cancer is a challenge every single time.
In order to add some positivity to this post, I do have to add some things that I have not had to survive, despite many warnings:
- Never had mouth sores.
- Appetite is still fine and don't have any specific food aversions.
- Nails didn't turn black or fall off.
- Still have a few of my eyebrows and all of my arm hair.
- No chemo-brain (as far as I can tell).
- Haven't had to be hospitalized (or even close) due to my compromised immune system.
- I can still do buttons.
Hopefully you are doing some serious knocking on wood with me, since there's still one infusion left.
After August 3, at my last day of chemo treatment, I will have to open some new doors (literally) in the cancer treatment survivor world. I will find out my schedule for surviving my silicon implant surgery, my radiation, and after that my hormone therapy and check-ups every few months. So it seems that for the rest of my life, I will be actively playing at Breast Cancer Treatment Survivor.
For one, the breast cancer didn't do anything to me. It was there, but it didn't make me feel sick, didn't hurt, didn't change my appearance, didn't make me sad or scared. There it sat, just being there, for an indeterminate amount of time, probably years. My surviving through those years didn't take any effort on my part.
Also, by popular culture definition, a survivor can "outplay, outwit, outlast". Thus, I feel like even when I finish all of this treatment, I just won't know if I've survived cancer's whole game. Yes, the odds will be in my favor, but if one of those cancer cells has survived (outlasted the mastectomy, chemo, radiation, and hormone therapy) and it causes problems in the future (5, 10, or 30 years from now), can I really say that I won here in 2012?
The breast cancer treatment, however, has been my challenge. It has scared me, brought me to the hospital, lain me out in bed, made me nauseous for months, changed my ability to take care of the girls, and has made me look and feel different.
So here's my take: I'm a Breast Cancer Treatment Survivor. Keeping in mind that some of these might be TMI, here is some of what I've survived since February 24.
- A mammogram/ultrasound ending with the doctor saying, "Sit down."
- Navigating the network of different doctors one must consult for breast cancer, including Ob/Gyn, radiologist, general surgeon, plastic surgeon, medical oncologist, and radiation oncologist, each who have their own offices, schedulers, insurance files, and procedures.
- CT scan, bone scan, and numerous blood draws that will continue for the rest of my life.
- A major surgery (bilateral mastectomy), and then a minor one (port) a few weeks later.
- Adriamycin/cytoxan chemotherapy (4X) which caused miserable nausea and fatigue.
- Neulasta (6X), causing extreme bone pain.
- Colds every other week as my white blood cell counts dropped and then rose.
- Hair loss
- Taxol chemotherapy (4, going on 5X) which caused sharp pains and neuropathy.
- My first and second yeast infections. The first one was agonizing because I didn't know what is was and for over a week dismissed it as an uncomfortable side effect of chemo, letting it get worse and worse until I finally got the right treatment.
- Having to call a doctor for a refill on narcotic pain medication, which goes against everything I have ever believed about dealing with pain. "Tough it out, Shari," has changed to "Maybe Vicodin will help." (Don't worry, I didn't take any today and I'm okay.)
- Heartburn worse than anytime during pregnancy or even after 5¢ wing nights in college.
- Hair loss for a second time (Remember that little bit of hair I mentioned in my last post? It is just starting to lose its battle with the Taxol.)
- Weight gain due to steroids I take to prevent an allergic reaction to Taxol. I'd say I'm up about 8 pounds over the past month, mostly in my tummy, without changing my diet at all.
- Finding childcare for two preschoolers during everything. Believe it or not, this final item has been the hardest to survive of everything listed. We've had wonderful friends helping at every turn, but the actual leaving of the children because of breast cancer is a challenge every single time.
In order to add some positivity to this post, I do have to add some things that I have not had to survive, despite many warnings:
- Never had mouth sores.
- Appetite is still fine and don't have any specific food aversions.
- Nails didn't turn black or fall off.
- Still have a few of my eyebrows and all of my arm hair.
- No chemo-brain (as far as I can tell).
- Haven't had to be hospitalized (or even close) due to my compromised immune system.
- I can still do buttons.
Hopefully you are doing some serious knocking on wood with me, since there's still one infusion left.
After August 3, at my last day of chemo treatment, I will have to open some new doors (literally) in the cancer treatment survivor world. I will find out my schedule for surviving my silicon implant surgery, my radiation, and after that my hormone therapy and check-ups every few months. So it seems that for the rest of my life, I will be actively playing at Breast Cancer Treatment Survivor.
Friday, July 13, 2012
The Bald Thing
Get it? A couple months ago, the title was "The Hair Thing". Now it's "The Bald Thing"? Yeah, I know. I didn't need to explain. But here's the real thing: I want to explain.
When we went to the salon to get my head shaved, I brought a new hat with a scarf to tie around it. It was pretty and stylish and covered every part of my head that would usually have hair (Thanks, Liz R.) I verified with the hair stylist that I'd tied the bow to appropriately cover the back of my neck so that one would assume hair was underneath. I even had a hat on when Paul got home from work and only removed it after the dinner conversation, "What did everyone do today?"
But to be honest, the new hairstyle (or non-hairstyle) is the MOST COMFORTABLE THING EVER! I highly, wholeheartedly recommend the bald thing for everybody on the planet!
Maybe it's just because the falling-out hair was unbearably itchy, but the difference between the 1-inch cut and the 0-inch cut is night and day. It's cool for summer. There's no hat-head when I do want a hat. I don't have to brush it out of my eyes (or brush it at all). Oh, and drying myself after a shower... Think about that for a moment.
So after a few days of being bald inside and making sure a hat was handy near the front and back doors in case of visitors, I ventured out to get the mail au-naturale. Although I was telling myself that I didn't want to be seen, deep down, I think I DID want to be seen. Not only did I want to see the reaction from a neighbor, but I wanted to see my own reaction.
I think the first person to see it was Brian across the street, and I was quick to say, "You get to see my bald look." Without flinching, he asked if it's comfortable. That was the perfect question, as it gave me confidence to explain the benefits.
Then I went through the following stages, each lasting about a week or two:
-Hat or scarf outside but never inside, even when answering the door, because if you're coming to see me, you get to see the real me.
-Outside in our yard bald, but hat or scarf nearby to be quickly put on when people came close.
-Bald all time at home, inside or out. Hat (gave up on the scarf as it got hotter) for visits at other people's houses or public venues.
-Started asking others if they mind me removing my hat because of the heat.
-Screw it. It's really hot and I'm feeling confident enough. Bald all the time.
Interestingly, for my first two bald trips out in public, my last nudge in the bare direction was from Paul. On the way out the door, I asked, "Hat or nothing?" and he non-chalantly replied both times, "Nothing."
Here's the first bald public appearance:
I've been bald all the time since at least the beginning of July. And here's the interesting thing: Not a single person has asked me about it. Not one. No strangers approaching with a, "My mom just finished chemo" supportive smile. No children yelling, "Why is that lady bald?" to an embarassed parent. No "Rock on, Sista'!" from mall shoppers. Nothing. Nothing at all.
Now there were a few fears I had during that month of staying covered that I had to get over before embracing bald. The first fear was about meeting new people to whom it might matter. This one came up when I brought the girls to their first weeks of camp. I didn't want any special treatment or judgement from the counselors, so I was sure to wear hats and scarves during my initial few drop-offs and pick-ups. Once everyone got to know Maggie and Reese separately from being, "The cancer lady's kids", I started coming bald. A few days later, I brought up the cancer conversation with the two lead counselors so they'd know the whole story. Now, I'm hoping it's "Maggie and Reese, the well-behaved, creative, and happy children who are handling their mom's breast cancer extraordinarily well."
I also was wary of dealing with people's sympathy. Some of the neighbors here who have known me since I was born (if you don't know, I live in the house where I grew up) have taken that angle, and I'm not comfortable with it. The two comments that stick are, "You poor dear. I've been praying for you," and "Well, your face looks great!" Both comments are from wonderful ladies who mean nothing but the best, but they just don't fit my scheme of dealing with this cancer. I'm not a poor dear, I'm an "awesome diva" (okay maybe not even that, but I'm a regular mom). And if you want to mention my being bald, just say it or ask about it. Complimenting my face, when it's the same face as I've always had, shows that you're trying too hard not to mention the hair. However, it seems that people of my generation somehow know to avoid the sympathy lines. I had a mall encounter with a mom from preschool start with, "Who is that beautiful bald lady!?" and I've had numerous compliments from other friends about my round head and big smile. I'm sure everyone's sympathetic inside, but somehow don't relay it to me.
Another fear was about children. I actually wouldn''t mind the loud questions to moms, but I didn't want to scare kids into thinking that there is something wrong or that their hair is going to fall out. I even asked Maggie and Reese if it was okay for me to go places without a hat, but they'd seen me bald at home for so long, I don't think they even noticed the steps.
However, I never had any fears about my appearance. To be blunt, Who cares? Remember, I'm fashion clueless and makeup-free in the first place. I wear Walmart t-shirts and 10-year-old Tevas (with socks if it's cold out). The distance from a Great Clips hair trim to a high-end salon head shaving isn't very far.
Another out-and-about picture:
I'll end this post with some unfortunate news. My hair is starting to grow back.
When we went to the salon to get my head shaved, I brought a new hat with a scarf to tie around it. It was pretty and stylish and covered every part of my head that would usually have hair (Thanks, Liz R.) I verified with the hair stylist that I'd tied the bow to appropriately cover the back of my neck so that one would assume hair was underneath. I even had a hat on when Paul got home from work and only removed it after the dinner conversation, "What did everyone do today?"
But to be honest, the new hairstyle (or non-hairstyle) is the MOST COMFORTABLE THING EVER! I highly, wholeheartedly recommend the bald thing for everybody on the planet!
Maybe it's just because the falling-out hair was unbearably itchy, but the difference between the 1-inch cut and the 0-inch cut is night and day. It's cool for summer. There's no hat-head when I do want a hat. I don't have to brush it out of my eyes (or brush it at all). Oh, and drying myself after a shower... Think about that for a moment.
So after a few days of being bald inside and making sure a hat was handy near the front and back doors in case of visitors, I ventured out to get the mail au-naturale. Although I was telling myself that I didn't want to be seen, deep down, I think I DID want to be seen. Not only did I want to see the reaction from a neighbor, but I wanted to see my own reaction.
I think the first person to see it was Brian across the street, and I was quick to say, "You get to see my bald look." Without flinching, he asked if it's comfortable. That was the perfect question, as it gave me confidence to explain the benefits.
Then I went through the following stages, each lasting about a week or two:
-Hat or scarf outside but never inside, even when answering the door, because if you're coming to see me, you get to see the real me.
-Outside in our yard bald, but hat or scarf nearby to be quickly put on when people came close.
-Bald all time at home, inside or out. Hat (gave up on the scarf as it got hotter) for visits at other people's houses or public venues.
-Started asking others if they mind me removing my hat because of the heat.
-Screw it. It's really hot and I'm feeling confident enough. Bald all the time.
Interestingly, for my first two bald trips out in public, my last nudge in the bare direction was from Paul. On the way out the door, I asked, "Hat or nothing?" and he non-chalantly replied both times, "Nothing."
Here's the first bald public appearance:
I've been bald all the time since at least the beginning of July. And here's the interesting thing: Not a single person has asked me about it. Not one. No strangers approaching with a, "My mom just finished chemo" supportive smile. No children yelling, "Why is that lady bald?" to an embarassed parent. No "Rock on, Sista'!" from mall shoppers. Nothing. Nothing at all.
Now there were a few fears I had during that month of staying covered that I had to get over before embracing bald. The first fear was about meeting new people to whom it might matter. This one came up when I brought the girls to their first weeks of camp. I didn't want any special treatment or judgement from the counselors, so I was sure to wear hats and scarves during my initial few drop-offs and pick-ups. Once everyone got to know Maggie and Reese separately from being, "The cancer lady's kids", I started coming bald. A few days later, I brought up the cancer conversation with the two lead counselors so they'd know the whole story. Now, I'm hoping it's "Maggie and Reese, the well-behaved, creative, and happy children who are handling their mom's breast cancer extraordinarily well."
I also was wary of dealing with people's sympathy. Some of the neighbors here who have known me since I was born (if you don't know, I live in the house where I grew up) have taken that angle, and I'm not comfortable with it. The two comments that stick are, "You poor dear. I've been praying for you," and "Well, your face looks great!" Both comments are from wonderful ladies who mean nothing but the best, but they just don't fit my scheme of dealing with this cancer. I'm not a poor dear, I'm an "awesome diva" (okay maybe not even that, but I'm a regular mom). And if you want to mention my being bald, just say it or ask about it. Complimenting my face, when it's the same face as I've always had, shows that you're trying too hard not to mention the hair. However, it seems that people of my generation somehow know to avoid the sympathy lines. I had a mall encounter with a mom from preschool start with, "Who is that beautiful bald lady!?" and I've had numerous compliments from other friends about my round head and big smile. I'm sure everyone's sympathetic inside, but somehow don't relay it to me.
Another fear was about children. I actually wouldn''t mind the loud questions to moms, but I didn't want to scare kids into thinking that there is something wrong or that their hair is going to fall out. I even asked Maggie and Reese if it was okay for me to go places without a hat, but they'd seen me bald at home for so long, I don't think they even noticed the steps.
However, I never had any fears about my appearance. To be blunt, Who cares? Remember, I'm fashion clueless and makeup-free in the first place. I wear Walmart t-shirts and 10-year-old Tevas (with socks if it's cold out). The distance from a Great Clips hair trim to a high-end salon head shaving isn't very far.
Another out-and-about picture:
I'll end this post with some unfortunate news. My hair is starting to grow back.
Friday, July 6, 2012
Yay, I Get to Have Chemo!
After last week's low white blood cell cancellation, I willed my body to rebound and it did. I get to have Chemo! YAY?
There's another bit of exciting good (?) news today, but I have to go into teacher-mode to explain a whole lot of stuff before telling the news. If you want to cheat, the skip to the last two paragraphs.
Back in May, I found out that there are two different schedules for Taxol infusions for breast cancer patients. The first one, and the one that I was assigned to, gives Taxol at a low dose every week for 12 straight weeks. However, there's also a treatment that gives a higher dose only 4 times, every other week. When I heard about that option, called dose-dense, I did the math. 4 treatments biweekly would have me done with chemo in EIGHT weeks instead of 12. Seemed like a no-brainer to me.
It seemed like the reason I was put on the 12 week plan was because of a study I'm participating in about Herceptin, but I was randomized into a control group for that. (I'm a statistic in a study, but not receiving Herceptin, and I'll be compared to the women who get Herceptin. All for the good of science.)
So I did the research.
There is one study from 2008 which indicates that doing the 12 week plan decreases your odds of recurrence by a few percentage points. However, the study compared getting dose-dense paclitaxel (scientific name) every three weeks, not two, with my 12 week plan. There isn't a study about the two week plan, and maybe it's every bit as effective as every week, and I could be done in early August. I decided to ask the oncologist.
Dr. Kirshner is so laid back about this cancer treatment thing, and told me a story about breast cancer treatment. He said that back in the 60's and 70's, when they first started the AC treatment for breast cancer, the patients were put on a 2 YEAR plan of chemo. (Can you imagine?!?) Then, someone did a study comparing one year to two years, and found the recurrence rate was not affected by "only" doing year, so that became the standard. Later, someone compared 12 months of AC to 6 months, and the same thing happened. This continued to the point where we are right now, with my 4 treatments of AC. He said, "Nobody's ever done a study comparing 4 treatments to 3, but the standard right now is 4, so that's what you're getting. Who knows if you could've stopped after 3?"
Not an answer you'd expect from a doctor, but interesting nonetheless. So his answer about the Taxol 12 weekly vs. 4 biweekly treatments was, "It's up to you." When I mentioned the study, he said that one study doesn't have all of the answers. The ball was in my court.
Luckily, I had another secret source: My friend Eric from college is a pediatric oncologist in Virgina. I emailed him the whole deal and asked if I should base my treatment upon that one study, or go for the one that is convenient to my life. Eric had a bit to say, but one sentence was the kicker that brought me back to the 12 week plan: "The study developed the “standard arm” (which you randomized to) for a reason." Some group of doctors, somewhere in the country decided that their best bet on treating women with breast cancer was to do the 12 week plan and maybe give Herceptin. I decided that if I went against what a group of doctors were saying and then my cancer comes back someday, I'd totally blame myself.
So twelve weeks it was. All the way through to August 31, and then last week's change to make it September 7.
After the low white blood cell count prevented my treatment last week, the nurses had some ideas of what was going to happen to deal with that problem, but needed to speak to Dr. Kirshner first before giving the definite answer. I called yesterday to find out the verdict and was told that Dr. Kirshner wanted to discuss it with me before my treatment today, so I arrived here an hour early. Lo and behold, Dr. Kirshner says, without hesitance or sugar-coating, "Let's do the dose-dense Taxol with Neulasta shots."
So now, on doctor's orders, I'll be getting the treatment that's over sooner! Today is treatment number two already, so two more left! If everything goes well with these, my last infusion will be August 3! (My exclamation points should show my feeling about this.) Yes, I do have to get Neulasta again, but only this week and the next treatment. I don't have to have it the last treatment because they can just let my body heal itself then. And if something recurs in the future, I can blame my body or Dr. Kirsher and not myself! This is the Best Breast Cancer Ever.
There's another bit of exciting good (?) news today, but I have to go into teacher-mode to explain a whole lot of stuff before telling the news. If you want to cheat, the skip to the last two paragraphs.
Back in May, I found out that there are two different schedules for Taxol infusions for breast cancer patients. The first one, and the one that I was assigned to, gives Taxol at a low dose every week for 12 straight weeks. However, there's also a treatment that gives a higher dose only 4 times, every other week. When I heard about that option, called dose-dense, I did the math. 4 treatments biweekly would have me done with chemo in EIGHT weeks instead of 12. Seemed like a no-brainer to me.
It seemed like the reason I was put on the 12 week plan was because of a study I'm participating in about Herceptin, but I was randomized into a control group for that. (I'm a statistic in a study, but not receiving Herceptin, and I'll be compared to the women who get Herceptin. All for the good of science.)
So I did the research.
There is one study from 2008 which indicates that doing the 12 week plan decreases your odds of recurrence by a few percentage points. However, the study compared getting dose-dense paclitaxel (scientific name) every three weeks, not two, with my 12 week plan. There isn't a study about the two week plan, and maybe it's every bit as effective as every week, and I could be done in early August. I decided to ask the oncologist.
Dr. Kirshner is so laid back about this cancer treatment thing, and told me a story about breast cancer treatment. He said that back in the 60's and 70's, when they first started the AC treatment for breast cancer, the patients were put on a 2 YEAR plan of chemo. (Can you imagine?!?) Then, someone did a study comparing one year to two years, and found the recurrence rate was not affected by "only" doing year, so that became the standard. Later, someone compared 12 months of AC to 6 months, and the same thing happened. This continued to the point where we are right now, with my 4 treatments of AC. He said, "Nobody's ever done a study comparing 4 treatments to 3, but the standard right now is 4, so that's what you're getting. Who knows if you could've stopped after 3?"
Not an answer you'd expect from a doctor, but interesting nonetheless. So his answer about the Taxol 12 weekly vs. 4 biweekly treatments was, "It's up to you." When I mentioned the study, he said that one study doesn't have all of the answers. The ball was in my court.
Luckily, I had another secret source: My friend Eric from college is a pediatric oncologist in Virgina. I emailed him the whole deal and asked if I should base my treatment upon that one study, or go for the one that is convenient to my life. Eric had a bit to say, but one sentence was the kicker that brought me back to the 12 week plan: "The study developed the “standard arm” (which you randomized to) for a reason." Some group of doctors, somewhere in the country decided that their best bet on treating women with breast cancer was to do the 12 week plan and maybe give Herceptin. I decided that if I went against what a group of doctors were saying and then my cancer comes back someday, I'd totally blame myself.
So twelve weeks it was. All the way through to August 31, and then last week's change to make it September 7.
After the low white blood cell count prevented my treatment last week, the nurses had some ideas of what was going to happen to deal with that problem, but needed to speak to Dr. Kirshner first before giving the definite answer. I called yesterday to find out the verdict and was told that Dr. Kirshner wanted to discuss it with me before my treatment today, so I arrived here an hour early. Lo and behold, Dr. Kirshner says, without hesitance or sugar-coating, "Let's do the dose-dense Taxol with Neulasta shots."
So now, on doctor's orders, I'll be getting the treatment that's over sooner! Today is treatment number two already, so two more left! If everything goes well with these, my last infusion will be August 3! (My exclamation points should show my feeling about this.) Yes, I do have to get Neulasta again, but only this week and the next treatment. I don't have to have it the last treatment because they can just let my body heal itself then. And if something recurs in the future, I can blame my body or Dr. Kirsher and not myself! This is the Best Breast Cancer Ever.
Tuesday, July 3, 2012
I'm Just Gonna Do This
When I write, as much as I like to sound natural and I enjoy using a casual conversation-like tone, I'm really totally anal about my product. I mentally organize my writing in advance (even responses to others on Facebook and when texting), I proofread before posting, and I go back to edit typos in a panic that someone may have actually caught it.
Therefore, I've been completely overwhelmed with the idea of catching up on this blog. The longer I spend mentally planning what to say next time I post, the more stuff I have to say and the more overwhelmed I get.
So here I am to just go ahead and type. My idea is to do sub-headings, but even that may not work.
The End of AC
To those of you on the East Coast, that title has nothing to do with the heat. Remember that Adriamycin/Cytoxan cocktail of chemo drugs I was getting in April and May? It was AWFUL. I mean those last two treatments were HORRIBLE. I was brave throughout, taking advantage when people watched the kids but being Mommy for the majority of the time. But those weeks of unending nausea SUUUUUUUUUCKED!!!!!
After the AC final treatment on May 24, my body took almost two weeks to feel even sort-of normal. Again, if you saw me out and about (picking strawberries, visiting Green Lakes, hosting playdates, etc), I would have smiled and said, "I'm fine. I'm on a little break between treatments right now." But really, I was feeling like I was going to puke on your feet and all I wanted was to be asleep. It was hard to feel like I'd accomplished something by finishing the AC treatment when I was still feeling so yucky.
Not only was I feeling sick, but I was stressed about trying out a new drug, Taxol, for the whole entire summer.
Hoping to Be "Most People"
Luckily, on the weekend before starting Taxol, I finally found that I could brush my teeth without gagging. So going into that first infusion, I'd had about 5 good days. Now, all I could do is hope that Taxol would be easier on me than AC. The doctors and nurses kept saying, "This is so much easier for 'most people'" and "'Most people' don't get as nauseous with Taxol." My problem there was that 'most people' don't get breast cancer at age 40. I'm not 'most people' any more. So I worried that Taxol would knock me out just as badly as AC.
A little background about Taxol. There some ingredient in it that's made from tree bark. We all know about allergies to nuts and tree stuff, so Taxol has a high risk of allergies. I could have been sitting there hooked up to this new IV, and suddenly have a rash, my throat swelling and need emergency drugs to make sure I could breathe. They even prop an "emergency kit" next to the IV pole as they administer the Taxol. Comforting, huh?
The night before each of my Taxol infusions, I have to take steroids to try to strengthen my body against this possible allergic reaction. More specifically, I have to take the steroids 6 and 12 hours before treatment, so I have to set an alarm to wake up and take one of them.
On June 15, there I sat, watching the Taxol go into my port, and not feeling any swelling or itching. Whew. Then I went home, waiting to feel sick. Nope. The IV Benedryl (more anti-allergy just-in-case medicine) made me sleep for a while, but when I woke up, I was fine.
I'm MOST PEOPLE!!!
The process was the same on June 22, and again, no nausea!
Neuropathy
When my Dad was dealing with Parkinson's disease for more than a decade, it seemed logical at first to look for support groups for him. Unfortunately, each time he went to a support group, somebody would complain about a symptom he had yet to experience. The next day, Dad would invariably start to feel that symptom. I attributed this to his pessimistic attitude (anyone who knew him would verify that Dad was a textbook pessimist) and giggled at his nuttiness.
Guess what? I'm a nut, too. One of the main side effects with Taxol (besides that whole dying from an allergic reaction thing) is something called neuropathy. It's a tingling, numb feeling in your fingers and toes that doesn't go away and can last for an indefinite amount of time after you finish treatments.
The week BEFORE starting Taxol, my hands started feeling funny. I can't say it's tingling or numbness, but my best description for it is the feeling you get when you raise your hand in class and have to keep it up for a while. It's just like there's not enough circulation there. I brought it up to the nurses at my first Taxol treatment, and they said it sounds like neuropathy, but I shouldn't be feeling it from the AC drugs. My crazy mind was making up symptoms to go with a drug I hadn't received yet.
The neuropathy has gotten a little worse after two treatments. Now it's like that semi-numb feeling you get when you lean on one hand for a long time while reading a book in bed. Unfortunately, I feel that feeling all day, and shaking my hands to get the circulation going doesn't help. But the routine question they ask me when I mention it is, "Can you still do buttons?", to which the answer is, "Of course." So this neuropathy is nothing to worry about yet.
As with the AC, the Taxol may build up in my system and be harder to take by the 6th or 8th or 11th treatment. But for now, I can live with my crazy mind producing neuropathy, as long as I'm not nauseous.
Seven More Days
Now that I've wrapped my mind around this Taxol actually being easier than AC, I willingly went in to the oncology center last Friday (treatments are now on Friday in order to coincide better with Paul's work schedule). I sat down with my laptop and was eager to check off the third Taxol treatment of twelve. Twenty-five percent, baby!
If only life could be that easy. My white blood cell count was way too low for them to treat me (specifically, the neutrophils were below 1.0 somethings per something). The basic answer to the problem is, "Come back next week and we'll try again."
Being that I still have to get a total twelve of these treatments, my end date is now September 7 instead of August 31. Talk about a psychological blow: I've been calling this 12-week Taxol regimen "the summer". September 7 isn't summer!
Not only that, but because of the white blood cell problem, I'll now have to take something like that awful Neulasta. Remember that potent shot that knocked me on my butt for two days after the AC treatments? Yup, more of that. Now, this is a lower dosage version called Neupogen, where I receive just a little bit for each of 5 days after treatment. We're currently trying to find out if the insurance company will let me do my own shots at home, as opposed to having to drive to the oncology center six days a week (treatment plus five Neupogen shots). But the main thing on my crazy mind is that 'Most People' respond better to Neupogen than Neulasta.
Another week, hoping that I'm 'Most People'.
Therefore, I've been completely overwhelmed with the idea of catching up on this blog. The longer I spend mentally planning what to say next time I post, the more stuff I have to say and the more overwhelmed I get.
So here I am to just go ahead and type. My idea is to do sub-headings, but even that may not work.
The End of AC
To those of you on the East Coast, that title has nothing to do with the heat. Remember that Adriamycin/Cytoxan cocktail of chemo drugs I was getting in April and May? It was AWFUL. I mean those last two treatments were HORRIBLE. I was brave throughout, taking advantage when people watched the kids but being Mommy for the majority of the time. But those weeks of unending nausea SUUUUUUUUUCKED!!!!!
After the AC final treatment on May 24, my body took almost two weeks to feel even sort-of normal. Again, if you saw me out and about (picking strawberries, visiting Green Lakes, hosting playdates, etc), I would have smiled and said, "I'm fine. I'm on a little break between treatments right now." But really, I was feeling like I was going to puke on your feet and all I wanted was to be asleep. It was hard to feel like I'd accomplished something by finishing the AC treatment when I was still feeling so yucky.
Not only was I feeling sick, but I was stressed about trying out a new drug, Taxol, for the whole entire summer.
Hoping to Be "Most People"
Luckily, on the weekend before starting Taxol, I finally found that I could brush my teeth without gagging. So going into that first infusion, I'd had about 5 good days. Now, all I could do is hope that Taxol would be easier on me than AC. The doctors and nurses kept saying, "This is so much easier for 'most people'" and "'Most people' don't get as nauseous with Taxol." My problem there was that 'most people' don't get breast cancer at age 40. I'm not 'most people' any more. So I worried that Taxol would knock me out just as badly as AC.
A little background about Taxol. There some ingredient in it that's made from tree bark. We all know about allergies to nuts and tree stuff, so Taxol has a high risk of allergies. I could have been sitting there hooked up to this new IV, and suddenly have a rash, my throat swelling and need emergency drugs to make sure I could breathe. They even prop an "emergency kit" next to the IV pole as they administer the Taxol. Comforting, huh?
The night before each of my Taxol infusions, I have to take steroids to try to strengthen my body against this possible allergic reaction. More specifically, I have to take the steroids 6 and 12 hours before treatment, so I have to set an alarm to wake up and take one of them.
On June 15, there I sat, watching the Taxol go into my port, and not feeling any swelling or itching. Whew. Then I went home, waiting to feel sick. Nope. The IV Benedryl (more anti-allergy just-in-case medicine) made me sleep for a while, but when I woke up, I was fine.
I'm MOST PEOPLE!!!
The process was the same on June 22, and again, no nausea!
Neuropathy
When my Dad was dealing with Parkinson's disease for more than a decade, it seemed logical at first to look for support groups for him. Unfortunately, each time he went to a support group, somebody would complain about a symptom he had yet to experience. The next day, Dad would invariably start to feel that symptom. I attributed this to his pessimistic attitude (anyone who knew him would verify that Dad was a textbook pessimist) and giggled at his nuttiness.
Guess what? I'm a nut, too. One of the main side effects with Taxol (besides that whole dying from an allergic reaction thing) is something called neuropathy. It's a tingling, numb feeling in your fingers and toes that doesn't go away and can last for an indefinite amount of time after you finish treatments.
The week BEFORE starting Taxol, my hands started feeling funny. I can't say it's tingling or numbness, but my best description for it is the feeling you get when you raise your hand in class and have to keep it up for a while. It's just like there's not enough circulation there. I brought it up to the nurses at my first Taxol treatment, and they said it sounds like neuropathy, but I shouldn't be feeling it from the AC drugs. My crazy mind was making up symptoms to go with a drug I hadn't received yet.
The neuropathy has gotten a little worse after two treatments. Now it's like that semi-numb feeling you get when you lean on one hand for a long time while reading a book in bed. Unfortunately, I feel that feeling all day, and shaking my hands to get the circulation going doesn't help. But the routine question they ask me when I mention it is, "Can you still do buttons?", to which the answer is, "Of course." So this neuropathy is nothing to worry about yet.
As with the AC, the Taxol may build up in my system and be harder to take by the 6th or 8th or 11th treatment. But for now, I can live with my crazy mind producing neuropathy, as long as I'm not nauseous.
Seven More Days
Now that I've wrapped my mind around this Taxol actually being easier than AC, I willingly went in to the oncology center last Friday (treatments are now on Friday in order to coincide better with Paul's work schedule). I sat down with my laptop and was eager to check off the third Taxol treatment of twelve. Twenty-five percent, baby!
If only life could be that easy. My white blood cell count was way too low for them to treat me (specifically, the neutrophils were below 1.0 somethings per something). The basic answer to the problem is, "Come back next week and we'll try again."
Being that I still have to get a total twelve of these treatments, my end date is now September 7 instead of August 31. Talk about a psychological blow: I've been calling this 12-week Taxol regimen "the summer". September 7 isn't summer!
Not only that, but because of the white blood cell problem, I'll now have to take something like that awful Neulasta. Remember that potent shot that knocked me on my butt for two days after the AC treatments? Yup, more of that. Now, this is a lower dosage version called Neupogen, where I receive just a little bit for each of 5 days after treatment. We're currently trying to find out if the insurance company will let me do my own shots at home, as opposed to having to drive to the oncology center six days a week (treatment plus five Neupogen shots). But the main thing on my crazy mind is that 'Most People' respond better to Neupogen than Neulasta.
Another week, hoping that I'm 'Most People'.
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