Thursday, November 8, 2012

More Appropriate Pictures

Now that you've become accustomed to seeing pictures of my topless, scarred, oddly shaped, radiation burned boobs, I'll surprise you with some G rated photos.

A couple weekends ago, we spent some time with Lisa Rossi. She's a photographer in the Syracuse area who came highly recommended, and she totally lived up to our expectations. We met her at her house in Fabius and she made us feel comfortable playing in her field while she followed us around with her camera. Within a couple hours of our session, she had this preview photo up on Facebook.


Just tonight, she alerted me that she's posted more photos on her blog. I know you want to see, right? So click here to check them out. I promise my boobs are covered in every single one.

Wednesday, October 24, 2012

Real Breast Cancer Awareness

I've been trying to think of something to say about this October breast cancer "celebration" going on. However, I've decided to let a couple pictures tell a thousand words here.

This is what you see in October 2012:


This is what I see in October 2012:



 Not too much in common, right?




Wednesday, September 5, 2012

Tattoos and Cubbyholes

I'll start today with a little background on the radiation I'll be receiving over the next 6 weeks. Radiation therapy is when a high energy beam from a big machine is directed right at my breast. It will damage all cells in its path, but the healthy cells will grow back and (hopefully) the cancer ones will not. Since the beam is aiming only at my right breast, collarbone, and armpit, I will not feel the effects throughout my whole body like I did with chemo. To summarize what I've heard/read about how I'll feel, it'll be like a bad sunburn in that area which I'll treat with any number of creams until it heals.

In order to prevent the cancer cells from starting to grow, my radiation will be done for 28 straight weekdays. So that's almost 6 weeks where I go to my oncology clinic EVERY DAY, lay in a machine, get my right breast burned, and then walk out and continue my normal life. It sounded crazy and life-altering to me at first, but I've been assured that these appointments are 15 minutes long from the time you walk in the door until you are back at your car. The first time slot of the day is 7:45am and I've grabbed it up for the next 27 days, so my normal day starts at 8:00.

I had an appointment last Friday to set me up for this daily radiating. So I lay on a metal table with one arm up and they mapped out what they'll radiate. It took about 20 minutes of them telling me to hold completely still and "breathe normally" (can anyone breathe normally when they've just been told to do so?) for them to get the exact measurements they needed. Though I'd normally have been asking what they're looking for, I was told not to talk. The end result was me looking like this:

(Remember those drains from the double mastectomy? Those circle scars are where the tubes came out of my body. Also note the lumpy boob and the reason I considered getting the soft silicon put in now.)

The cool part is that dot with a circle. That's a new tattoo I have. It's a little blue dot that they'll use to line up the radiation beam every session, and I have two more of them. Wanna see? (Of course you do.)

My cleavage:
The top of my right breast:
As you can see, I'm a very moley person, so this new ink of mine won't make any difference in my appearance. I asked if they could make stars or hearts, but these are radiation technicians, not artists, so it was a no-go. (Probably a joke they hear frequently, too, as nobody even smiled.)

Now that I'm all inked up, I can go in every day and they'll burn the right place.

At 7:25 this morning, the whole family loaded into two cars and drove out to HOA in E. Syracuse. Paul took the girls to get coffee (him) and donuts (them), and I went into the building at 7:45. Instead of having a nurse come to the waiting room to get me, an intercom called, "Sharon L, come on back." I was told on Friday that I was to change into my gown (top only) myself and then sit in a holding area until someone came to get me. In order that they don't have to wash gowns that are used by the same person for a short period every day, I was given a cubbyhole. I took this picture after putting on my gown, so although you probably can't read that one says "Sharon L" you can look for the cubby with the white t-shirt and khaki shorts.
By the time I was finished snapping the picture, the tech was ready for me, and I walked into a room that had a foot thick metal door with the same radioactive symbol that Homer Simpson's plant has on it. The guy got me set up on that table and left the room. The machine whirred for about 15 seconds, then he reappeared. He put a thick layer of material on top of my breast and I asked what it is for. (I assumed I was allowed to talk since he was back in the radioactive chamber.) He said it simulates skin, so the next time they turned the beam on, the beam was actually going to a shallower level of my breast, thinking that it had already passed through skin when it hit the material. I guess that's a cool, low-tech way to treat different layers of tissue.

Two more 15 second whirrings, then I was done. I got changed and was back outside by 8:00 to send Paul off to work and take Maggie and Reese home. So that'll be the start to every day from now until October 12.

As advised, I put some special cream on the skin today and some Aquaphor this evening, but I really don't feel a thing. I guess it takes a few weeks for the burn to show up, and some people don't get much skin reaction at all. So with the exception of my still bald (but fuzzy) head, lumpy boobs, and some new tattoos, all's back to normal around here.

Tuesday, September 4, 2012

So Radiation It Is

No regrets. When I left you a couple weeks ago, I was on my way to talk to Dr. Alpert. Her advice was that doing the surgery first would be no problem at all. She gave all of the reasons that I listed in my Decisions post and could even add more. She said that studies have shown that starting radiation up to 12 weeks after chemo make no difference in the long run.

Despite her medical evidence, I still ended up choosing to deal with cancer first.

The final decision, though made by me, was really made by Paul. On that bad poll, he had voted to do the surgery first. However, seeing me wavering so much, he said the next day, "I think you should do the radiation first. It's the only way you'll never have regrets." And that's so true. If I did the reconstruction first and the cancer ever comes back, I'd blame the decision. Now the worst case is that I have some extra scars or less perfect fake boobs. But if the cancer ever comes back, I'll know I did everything I could right now.

So radiation will start tomorrow morning.

I'll tell you more about the experience of radiation in my next post, but I've been asked a few times since ending chemo on August 3 if I'm "in remission" or "cured" or whatever. The only answer I have is that the doctors believe they got all of the cancer out of me back on March 16 with the double mastectomy. So if we were lucky, I was "cured" then. But the question since then has been whether they really did get all of the cancer or if some of the cancer cells weren't attached to the tumor in my breast. That's why I've been doing all of this other stuff. Chemo, radiation, and hormone pills are just insurance policies in case of some stray cancer cells. So I think "cured" is a confidence thing. When I have been off the daily/weekly treatment roller coaster for long enough and I've had enough blood tests that come out normal, I'll start to feel like maybe they got everything. For now, I still have radiation so we'll keep on fighting the possible cancer cells.

(Though that sounded like a closing sentence, it actually opens up a whole new can of worms. For someone who has been diagnosed with cancer and has had a doctor-made plan to "fix it" since the initial mammogram, the last day of radiation will be a scary one. They'll say, "Congrats! We're done here. Go back to your pre-cancer life now." But I, as a patient, will have to actually do that, knowing that somehow cancer found me, it could come back, and the doctors aren't seeing me every week anymore. Something to look forward to, huh? I'm told they have counseling and support groups for people who have just been "cured" from cancer, and I now understand why.)

Thursday, August 16, 2012

Early Poll Results Show...

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?

When Shari's hair grows back, it will be (choose as many as you like):
  
pollcode.com free polls 

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:

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

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 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.


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.

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.

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'.

Saturday, May 19, 2012

Nausea

Remember that night when you were 21 (okay, 18) and you drank way too many white Russians? Then you loudly professed your undying love to a cute boy in front of all of your friends, proceeded to fall into a number of hedges, and then spent much of the night and the next day hugging the toilet? Or was that just me?

After that night, the words "white Russian" probably made your stomach lurch. The idea of ever eating a perogi again was beyond your capacity. And most likely, walking near the house where the drinking started, and maybe into the cafeteria where the eating took place, took a bit of effort and a few deep breaths.

That is how I'm feeling right now about my chemo. Every other Thursday, they infuse white Russians directly into my body. They give me anti-nausea meds to prevent me from sitting next to the toilet for days afterwards, but my body still knows that it wants to get rid of the stuff at every moment. So every time I even think about chemo, my stomach lurches. I literally start gagging at the sight of the building where I have to go for my appointments. And sadly, everything that reminds me about my chemo and this breast cancer experience in general makes me a bit queasy.

That includes this blog. I have been meaning to write for a while with updates about my complete hair-loss, the drugs I'll be taking (both chemo and anti-nausea), the awesome visit from my sister Kathy, and generally how life is going. However, as I approach the computer, I think, "Yuck. I don't want to think about it. I'll go read or watch the kids or play Words With Friends."

So here's the general update:

Hair-Loss - If you're on Facebook, you've seen my bald head. It's not quite as baby's bottom smooth as it looks in the picture because the shaving took place with clippers (not shaving cream and a razor) so there is stubble in the places where there still would be hair. The stubble is still falling out, so maybe baby's bottom is in the near future. Still have my eyebrows and eyelashes, at least.


Anti-nausea Drugs - Each infusion, we've tried a new drug for my nausea. The first infusion, Atavan made me feel drunk and I didn't like feeling that way around the kids. Second infusion, we gave Compazine a go, but that made me so jittery that I couldn't focus or sleep. This past time, I tried Zofran, which I don't think did anything and I was more nauseous than the other times. For my next infusion, there's something new (I haven't picked it up from the pharmacy yet, so I don't remember the name), and my fingers are crossed that it might work.

Chemo Drugs - The adriamycin/cytoxan infusions that I get 4 times are 75% done. According to Dr. Kirshner and most of the people at the oncology clinic, this has been the heavy-duty part of my chemo. The taxol I'll receive for 12 straight weeks through June, July, and August is easier for most people to handle. It's in a lower dosage because it's done weekly, and I don't have to have the neulasta (that white blood cell increasing but bone-pain inducing medicine) while on taxol. However, Maggie told me that she doesn't want to make any promises. Some people do have a rough time with taxol. As much as I'm trying to just look toward that one more treatment of AC as a milestone I've reached, I am nervous that I'll be one of the unlucky ones on the taxol. Thinking positive isn't as easy as it used to be, but I'm trying.

Kathy's visit - I had the most relaxing week with Kathy here, and I totally needed it. As much as I can get myself up and about to take care of the girls by the fourth day after chemo, it was amazing not to have to. She did all of the Mommy things this week: driving to preschoool, swimming at the YMCA, playing at parks, and riding bikes outside. I got to read and nap, which was such a treat. Thanks, Kath!

Okay, I said more than I thought I would. In general, each AC treatment is more difficult, but I want to soldier on for the sake of the girls. If I physically can get out with them and make their lives normal, I will. We had a little third birthday party for Reese today, the weather's been nice and looks to be all week, and we're going to keep having fun until Thursday...

Wait, I just said the word "Thursday". I feel a little sick.

Saturday, May 5, 2012

The Hair Thing

I really, really, truly didn't think that losing my hair would bother me. I've never been that much of a fashionable person, totally don't have anywhere to be that my hair would matter, I am the first to explain that it's temporary, and the idea of not having anything to brush and just throwing on a hat appeals to me quite nicely.

However, I've been in quite a funk for the past week. My hair started falling out last weekend and I haven't really felt like posting since. My analysis is that there must be some deep seeded emotional attachment to controlling our appearance. I can still recite to you everything I listed above, but I just don't feel quite right about handfuls of hair coming out and it's kept me from blogging.

But before I go into the hair descriptions, let me back up a bit. The last time I posted was from my second chemo infusion. I was in bed that Thursday and then quite a bit through the weekend, just feeling weak and nauseous. Keeping in mind that I never liked being pregnant (no glowing, smiling, happy baby bump for me), I'd say that the first few days after a chemo treatment are worse than pregnancy but better than the flu. By Monday, I was able to be a Mommy while Paul went to work, although I sat on the couch and relied on Nick Jr. a lot more than the recommended allotment for preschoolers. Tuesday and Wednesday were back to normal routine and again, it was much like the yucky parts of being pregnant, where you're tired and a little queasy but make yourself keep going because what other choice do you have? By Thursday, I was physically back to normal and I'm so glad that my treatments are every other week, not every week.

However, even though I was feeling fine by Thursday and still am, the hair thing really has me in a funk. Okay, maybe it's not just the hair. The idea of having cancer isn't so pleasant, either. But this week has been much more blah for me than any other one since my mastectomy, so I have to think the hair plays into it. So here's the deal.

Last Saturday night, I noticed a few hairs and curiously pinched a little hair on my head. With no effort or pain at all, a group of strands came out. On Sunday morning, my pillow had a bunch of hair, and I could pinch groups of hair from anywhere on my head and have them come out. The books say "clumps" of hair, but I wouldn't call it that. I think it's more like shedding, where if I pinch 50 hairs, 10 of them may stay on my fingers painlessly. I don't have to pull and don't feel them coming out of the scalp. They're just waiting for me to pick them up and take them off.

Seeing all of these 6-8 inch long hairs around made me think of the nightmare of cleaning them up. There are about 100,000 hairs on a human head, and I couldn't imagine that much hair all over the house. So I told the girls to get their scissors and we'd take this into our hands. Ready? Go.


This looks fun, right? They lost interest after about 5 minutes and then went to play while Paul finished the job. Although I didn't have a definite plan at the beginning, we ended up using the clippers to leave about 1 inch of hair all over my head for now.

I know, I know. It looks fine. Still me. I did ponytails for years anyhow. Blah blah. However, it's not done. I have literally hundreds of 1 inch long hairs coming out every day, all over the house and all over Manlius. It's easier to clean up than if I'd left it longer (like a pet shedding now), but this is not the look I get to keep. I was hoping to have a few weeks of this, but look what I found this morning:

Those are bald spots. And I refuse to try to comb-over for long. Paul pointed out that they're on my temples, where hair would recede first on anyone, but I'm used to my thick hair giving no scalp-peeks at all. So, it's time to shave. During the week, I called a local salon that does free head shavings for chemo patients, and they said that when I'm ready, they can work me in within a day or two with a private room and everything. (I don't need the private room, but I do want the girls there to see it so they don't freak out at bald Mommy.) But darn-it, the bald spots showed up on a Saturday. I was in denial all day, and by the time I showed them to Paul and he confirmed that they are there, the salon was closed and they're not open Sundays or Mondays, so I'll have to wait until mid-week for the shave. I may have to do some hats beforehand.

A couple good news things, though. My head really doesn't feel the sensitivity that I'd been warned about, so I won't have to double layer through the summer. Also, once my hair starts growing back, I know that it'll only take a few centimeters of growth and I'll look the same as I do now.

I'll post again after the shave. Hopefully, I can keep myself from falling into one of these funks again for a while, but if anyone deserves a few days of feeling bummed, I guess it's someone dealing with cancer.


Thursday, April 26, 2012

Chemo #2

Why is this already feeling so routine to me? I'm in my second row 
chair (moving up in the world), Cytoxan is dripping into me, I'm using 
Paul's iPad, chatting with nurses Maggie and Patty, and judging the 
people around me (her wig looks fake...he complains too much...).

Maggie and Reese are at Arabella's house (girl from preschool) and 
Arabella's mom just texted me a picture of the girls playing on her 
new Rainbow playset. So since I don't have much to say today, I'll just 
show you my reason for doing chemo:
 
 

Saturday, April 21, 2012

On the Bright Side

The very week that I was being diagnosed with breast cancer, some Facebook friend (I truly don't remember who) posted a status about always finding the bright side of any situation. That's a load of crap. You can't tell me that during that first week, I should have been saying, "At least we caught it" and "I'm glad we have insurance." That first week, I NEEDED to be panicked and angry and grieving, and there is absolutely no reason to go looking for rays of sunshine. They will find their way through the clouds on their own. Really.

I bring this up because this week has had some real bright sides (or at least, a bunch of It-could-be-worses.)

I'll start with this article from the Syracuse paper: SRC to Layoff 35. Yes, that's Paul's company. We found out on Tuesday (the article was on Wednesday) that some people from his division were on the chopping block. Paul assured me that he was 99% sure that he was safe, but there's always that doubt. That would've sucked, right? But this post would have a different title if Paul's instinct was wrong, so he texted me around noon on Thursday that we could breathe again. Since the last layoff at SRC was in 1993, I think we'll be breathing freely for a while.

Also on Tuesday, I was standing around after Maggie's preschool with a group of moms. These are ladies with whom I've done playdates and birthday parties and we've clicked as friends, though we all just met in September. They all told me, point blank, to just put them down on the calendar for anytime I need childcare, ever. (Thanks to Kurri, Julia, Kim, Jen, and Holly, who wasn't there but I know would have said the same thing.) Now, I know that all sounds like pretty normal friend stuff: I watch your kids, you watch mine. But here's the real bright side: If I'd gotten cancer a year ago, I had literally ZERO friends around here like that. (Keep in mind that we'd just moved back here at that time. I'm not really that much of a loser. Or maybe I am and I just found some other losers. Alright, foot out of mouth and back to my story.) I'm so glad that this is happening now.

About that timing thing: It's a good thing the girls aren't older because then they may have had some preconceived ideas about cancer and/or chemo instead of just trusting that Mommy's going to get better. It's a good thing the girls aren't younger because 18 months ago, I was still nursing Reese. If there's a perfect age for a child to be when a Mommy gets breast cancer, I'd say it's 3 or 4. (Bingo!)

Now for just a list of bright sides:
- We're insured. So far, nothing has been questioned at all.
- I'm staying at home. How hard would these gazillion doctor's appointments be to fit in if I had a job?
- Paul has a bunch of vacation time. As irony would have it, Paul said at the beginning of February, "My vacation time is adding up to the point that I'm going to start losing some. We have to figure out how to use it." (We thought a trip to Baltimore/DC was going to be the solution.)
- Maggie and Reese have transitioned seamlessly from having Mommy 24/7/365 to being shuffled from one house to another a couple times a week. I really thought my presence was important, but I'm glad for their sakes to see that it's not.
- That whole Sunday School job thing worked out pretty well, too.
- Anti-nausea drugs exist.
- And a petty one: I had big boobs in the first place. Now I can appreciate my little(r) ones.

Finally, and the biggest one, I live in a time when I can blog and Facebook my whole experience so that support is coming from every person I've ever known. I don't know how I'd stay positive without little check-in emails every day from so many friends. Thank you all!

Wednesday, April 18, 2012

Back to Normal

My last two posts were about feeling like crap, so I do need to update.

I'm feeling pretty much normal! I'm doing my regular daily routine of preschool, storytimes, playdates, and way too much Nick Jr. for anyone's good. I still have my hair. I take an anti-nausea pill twice a day and it totally works. So I this may be a short post because there's little to say when everything is just normal.

Monday was a little exhausting, but Tuesday and Wednesday have just been like regular non-mastectomy, non-chemotherapy days. So that's good, right? I may have a little guilt about accepting all of the meals people are providing, because I could have cooked, but I didn't know that in advance. (And I have a feeling that the 12 weeks of chemo every Thursday instead of this bi-weekly recovery cushion thing are going to reassure me that I need all the help I can get.)

I do have one dilemma, though. I've said from the beginning that I have no problems with losing my hair. It's just hair and it'll grow back. But now that it could be any day, I'm a little nervous. Why? Because I don't know how to tie a headscarf. Seriously. I've received gifts of a few hats, but I've read that my scalp will be sensitive and I'll want a scarf underneath. I have a feeling that my scarf knot will be so lumpy that no hat will fit over it. What to do? What to do?

I could Google some videos, but that makes the whole thing a little too real. I may go into the little shoppe at the oncology center and ask, but I'm afraid I'll run into someone like the nutritionist who accidentally says the wrong thing.

Oh, oh! I didn't go into this post with this idea, but it may work. Can one of you do some research and then gently and politely tell me what I need to know?

As a pay-back, I will be posting pictures of the girls cutting my hair someday soon. They are totally excited for the day that we find too much hair in my brush or clumps on my pillow, because their safety scissors are ready!

Sunday, April 15, 2012

My Pillow Hurts

Three years ago, my mom died when she caught pneumonia during chemotherapy. Her situation was very different from mine, in that she was being treated for multiple myeloma, a systemic (whole body) cancer, so her chemo was done after a bone marrow transplant. Therefore, she had no immunity through her white blood cells, so when the pneumonia bug got her, she had nothing in her body to fight it.

When I heard I was going to be having chemo, of course I asked about my chances of catching pneumonia and dying. I was reassured by every doctor and nurse that my white blood cell count would always be monitored and that I wasn't even having anything close to that bone marrow transplant beforehand.

But keeping all of that in mind, I was excited when I found out that part of my regimen would include a shot called Neulasta on the day after every chemo treatment, which boosts my white blood cell count and therefore my immunity to everyday germs I may encounter.

Let me tell you something, though. That Neulasta shot has kicked my butt the past few days.

When I last posted on Thursday, I was fatigued, and that lasted through Friday morning, but by Friday afternoon, I was able to go outside and watch the girls play with chalk on the driveway. The drugs held off the nausea and I was pushing myself a little to keep my energy up during chemo.

I went in for the shot around 4pm and was even able to make dinner afterwards. Then, overnight, I started feeling how sharp and pointy my pillow actually is. Yes, a side effect of Neulasta is muscle and bone pain, and I was warned. But who knew that a pillow could be so uncomfortable? This pain lasted, despite the recommended doses of Aleve, until this afternoon (Sunday). Although I'm still exhausted from it, I think I'm passed the worst of the pain. (I hope...)

If I am feeling the way I have for the past 6 hours or so, I should be fine taking care of the girls this week. I'm so glad to have some people who have offered help for when I need naps, but I'm hoping to do most of the Mommying myself.

So in summary, chemo isn't too bad so far. Neulasta, which is just as important, is going to make a few days every cycle pretty tough. The good thing (for me at least) is that we planned this for the weekends, so I know the girls will be safe and happy with Paul.

Many of you have written emails and contacted me on Facebook to see how I'm doing. I still plan to get around to personal responses, but now that my pillow is feeling a little softer, it's time for some sleep.

Thursday, April 12, 2012

We're At War

There is a war going on in my body right now, and I can feel it. Every muscle and organ in my body is trying desperately to get rid of the Adriamycin and Cytoxan, and every one of the anti-nausea drugs I was given is preventing them from doing so.

I know the big picture is that the chemo drugs are fighting the cancer cells and will win, but for now, this mini-war between the chemo drugs and the anti-nausea drugs is the one I feel. And it has given me a full understanding of the side effect of fatigue.

Paul and I talked beforehand that we knew about fatigue from our sleepless nights and full days during the months after Maggie and Reese were each born. But I now realize that we were dealing with being tired and I can explain the difference. When you're tired, you feel as if you could curl up in a ball on the floor anywhere at any time and be immediately asleep. Now that I'm fatigued, the effort of raising my hand to my forehead to brush away a stray hair is exhausting and takes every bit of my energy. Getting out of bed requires unprecedented effort to get my hand to move the covers off my body, slowly place my feet on the floor, and don't even mention the marathon effort to stand and walk.

Now, research shows that the best way to control this fatigue (to some extent) is to get up and exercise. I guess I kind of felt that when I went downstairs for family dinner (which is still in my tummy, thank you drugs) because after that little movement, I could then move more for about an hour. I know some of you would then, based on that observation and the research, spend all day tomorrow at the gym. For me, nope. I am giving myself the morning to rest (thanks for taking the kids, Devorah) and then I'll get the kids after lunch and try out the Mommy-on-chemo-drugs job. If I continue to feel like I did after dinner, I can do this. And hopefully, I'll keep improving over the weekend. (Optimism, optimism...)

For now, I'm trying to avoid typing words with letters in them that require stretching out my fingers, cause the fatigue is getting in the way (darn that q in require...and I just did it two more times).

Okay, I'm out of breath from sitting and typing. Later!

Hop Aboard the Meal Train

My wonderful friends Liz Warren and Liz Rucker have been repeatedly asking what they can do to help us from the West Coast. I assigned them the task organizing a Meal Calendar. They have chosen to use mealtrain.com. Read this message from them to find out how to get involved:

Since Shari shared her news with all of us, many people have offered help in various forms....one of which has been to provide the family with meals.  With Shari starting her chemo today, we figured that now would be a good time to organize things so that we can keep the family well fed over the next few months.  To that end, we have set-up a mealtrain site so we can coordinate the effort to deliver yummy meals to the family through August (when Shari's treatment is scheduled to end).  
 
For those not familiar with mealtrain, it's an easy to use site that allows folks to sign up to bring a meal on a certain day.  Once on the site, you'll see available dates for which you can be a "dinner fairy" and simply click on the "Book this Date" button and you will be prompted to enter a meal and any notes you have.  The site also lists some of the family's favorite meals.  Lucky for us, there are no dislikes and no allergies...so figuring out what to make should be easy.  We do ask that you not make spicy food (as Paul is the only one that will eat that!) and that you keep in mind that the food should be as "kid-friendly" as possible....that being said, however, Shari and Paul will be appreciative of anything that we provide and will make any adjustments needed (e.g., scraping sauce off of things that the kids want plain, adding ketchup as requested etc.).  The family has fridge and freezer space available, so let's do what we can to keep the fridge and freezer stocked with yummy meals.  
 
We hope that many of you are able to help keep the Lindars well fed as Shari goes through her treatment.  If you are interested in helping out, please e-mail us at sharismealtrain@gmail.com and we'll send you the link to the site.  We know that Shari's blog is a public forum.  Given, however, that the mealtrain site contains address, phone number, and drop off info, for the security of the family, we ask that you include a brief note letting us know how you know Shari and/or Paul - this will help us ensure that we are only providing the personal info to those who truly know the Lindars.

If you have any questions, are weary of using the site, etc. please don't hesitate to let us know.  In an effort to keep Shari focused on her family and her treatment, we ask that you direct your questions, comments etc. to us at sharismealtrain@gmail.com.  We will be get back to you ASAP.

We realize that only Shari's local friends will be able to step up and deliver food in person and know that some of us that are further away (ourselves included) still want to help.  You can always contribute to the "It's raining" fund using the widget that Shari set up on her blog (http://sharisboobs.blogspot.com/2012/04/its-raining_02.html) or send a gift card for a local restaurant.  Local restaurants include:  Little Ceasar's, Pavone's, Applebys, TGI Fridays, and Chilli's.  If you're not sure how close a place is to Shari's house, just send us an e-mail asking and we'll let you know (one of us went to high school with Shari and, thus, is familiar with the area).

We all know that Shari will attempt to be super-woman as she goes through her treatments...let's try to give her one less thing to worry about and keep her family well fed. As her treatment progresses, Shari will let us know if her meal requirements change and we'll update the site accordingly.

We thank you all, in advance, for your help and know that Paul and Shari greatly appreciate your love, support, and food!  :-)

The Cancer Poisoning Has Begun

I have just received 105mg of Doxorubicin (Adriamycin) which is the drug which will make my hair fall out. Since it's supposed to take 10-20 days for that to start happening, this may be the only time I sit in my chemo chair with hair, so I had today's nurse Kathy take a picture. There is chemotherapy (1050mg Cytoxan) dripping into my body, but like any woman, I still wish I'd sucked in my tummy before this. So if you'll just focus on the fact that I have hair, we'll all be happy.
Now as I promised myself and you last night, I'm checking everything before Kathy puts it into the IV drip. Although I didn't complain, I was given FOUR different anti-nausea medicines before they started the Adriamycin, but here's what the tray looked like when they brought my chemo drugs:

I've checked the labels and dosages on everything. Those two red syringes are Adriamycin and besides that hair side effect, they will make my pee that exact color. Another WTF? moment, that at least the nurses laugh along when saying it, is that I'm supposed to expect my pee to be red for the next 24 hours, but I'm supposed to call them if there's blood in my urine.

One final photo. The front row seats by the window were taken, but I do get to pick my chair every time I come, so maybe I just need to schedule this for earlier in the day. This is one of five different aisles with six chairs each, so I'm certainly never going to be alone here. (F*&k cancer, right?)

I'll be back later to let you know if the anti-nausea drugs did their trick. One of them has the side-effect of causing drowsiness and I'm definitely feeling that one right now.

Wednesday, April 11, 2012

Time to Look Back and Laugh...

Tomorrow morning, I start chemo. Yes, I've been looking forward to this since I first found out the good it can do for my outlook. And I'm totally not worried about the nausea and hair-loss side effects. But I'll admit that I'm nervous. Let me put it this way: At 10:15am, I'll sit in a chair, and a nurse whom I've never met will inject a poison into my bloodstream. Can anyone reading this claim that they would have a perfectly restful night of sleep? I don't think so.

But I'll reassure you that I've done and will do everything I can to be my own advocate. I've spoken to Maggie, my chemo nurse, about my concerns. Although she won't be there in the room due to her full schedule, she's given me the name of the head nurse who will be in the infusion room at the time (Allison). Maggie has spoken to Allison, who is aware that I will be double-checking everything. I know the generic and brand names for the drugs I expect to receive and I will check the bags. I will ask to see my chart and the calculations of how much I should receive based on my height and weight. I plan to report anything I feel immediately, regardless of whether they've warned me it's supposed to be happening. And in general, I will not be an easy patient tomorrow. I'm sure this'll get easier, but for the first day, all of this is necessary.

But anyhow, on to the title of this post because we all need a little laugh. Throughout this experience, I've had a few things said or done that were just completely mind-boggling. Now that my jaw is back in it's normal place, I can share them with you and we can all laugh.

First of all, when I was having my second opinion done at Upstate, they needed a copy of my mammogram and ultrasound from Crouse. I was told to stop by the Crouse records department and I hand-carried a CD into my appointment at Upstate. I gave it to the staff as I checked in and never thought about it again...until...

A few days later, after we'd chosen to use the doctors at Crouse, that very CD was mailed to us at home. Like I wanted my ultrasound pictures for my scrapbook or something. Do you think I should make the ultrasound of my cancerous tumor my Facebook profile picture? I can if you want me to. Since I'm a little savvy at blogging pictures now, and this one doesn't have any Frankenstitches, I'll show you this one right here without the need to click:

Looks just like those ultrasounds you see of babies, right? Even has the measurement marks (which seem to indicate that they rounded up when they called it 2.5cm) and the label on the bottom "RT Lump". Oh, and I have one of the tumor hanging out with its two little friends:

Now here's where I'm going to have to ask Ron to close his eyes, as no brother wants to see even the outline of his sister's boob. Note here that they've even manually circled the lump for my viewing enjoyment.


You may commence with your comments about how adorable my breast cancer is and offer your congratulations to Paul and me on this new addition to our life.

So now on to the other OMG-moment. I had an appointment with a nutritionist at the oncology center last week. As I entered her office, she had me sit down and said, "Before I begin, I want you to have a chance to ask any questions you may have." I smiled and said, "For these past few weeks, I have been questioning everything I have eaten in my entire life, wondering whether it caused cancer."

Now I can think of three possible responses she could make at this point.

Best answer: "Oh, Sweetie, you didn't cause this cancer. Please don't blame yourself. You might never know, or you might even find out that you have the BRCA gene and it would've happened no matter what."

Acceptable answer: "We will never know what caused your cancer, so don't go worrying about that. Let's just figure out how to prevent it from coming back."

I'm An Asshole answer: "Yeah. It could've been something you ate like ten years ago."

Guess which one she picked? I'm serious here. She just blamed a patient for her own breast cancer! THEN, I had to sit in a meeting with her, listening to her tell me what food are healthy to eat. And no, this wasn't a detailed "foods that prevent cancer" plan. She was telling me that I should eat fruits and vegetables, drink non-caffeinated beverages, and that organic foods are more healthy than generic.

Yeah, I didn't let that meeting last too long, and I'll probably request a different nutritionist if I see a need for one in the future. But at least we can look back and laugh at her.

Thursday, April 5, 2012

The Picture You've Been Waiting For (or not...)

You know you want to see them. Don't deny it. I mean, it's the address of the blog, for goodness sake. So I'm boldly going where few double mastectomists have gone before. I'm going to let you see a picture.

Before you go clicking on that link down there, I have to explain a few things. But I know you've already scrolled down and clicked. So I'll capitalize one thing so maybe you'll see it before you even start reading this paragraph. I HAVE NO NIPPLES. Okay, was that big enough?

Now for you rule-followers who didn't click in advance, I'll get on with the explaining.

When Dr. Cooper went to take off my boobs, he made an oval shaped cut, maybe 5 inches wide, right around the top of my cancer breast. Then he took off that skin and discarded it (actually, sent it to the pathology lab) and scooped out all of the breast tissue underneath. I guess I picture it kind of like scooping chili out of a bread bowl, only taking an hour while carefully using a scalpel.

Then, Dr. Baum put a bag of saline inside the empty hole and sewed up the skin that was left. (He also added some AlloDerm to attach to the muscle for support, but if you Google that, you might be disgusted, so I'll let you few curious readers do that on your own.) For some women with normal sized breasts, the bag of saline may have been all that fit. But you all know that I had D cups before, so he was able to put 350ccs of saline inside the expander during my original surgery date. I haven't had any more saline added, and I'm quite certain that I'm fine with what I have right now.

There will always be a scar horizontally across my breasts. However, it will fade with time. After my chemo is done, Dr. Baum with cut those same lines again, take out the saline bags (expanders) and put in my silicone implants. He will also reshape the breasts so that they match a little better and are a little rounder.

If I want to, I can have another small surgery where he can take some of my skin and fashion it into a nipple shape. I don't know how that's done, and I haven't decided if I even want to do it. Paul's fine with the way it is, and I am too, as the new nipples would have no functionality nor feel any different sensations than regular skin. The only reason I might do it is that Maggie and Reese might feel more comfortable during puberty if they look like their mom.

The nipples that can be created are the same color as the skin on the rest of the breast, so if someone wants to have that darker skin there, it has to be tattooed on. Dr. Baum showed me pictures of other patients and it totally ends up looking like a nipple. But I will never forget the picture of one creative (or crazy) woman. Instead of having her nipples tattooed a shade darker than her breast, she had a sunburst put on each nipple. It got me thinking. If I were crazy enough, I could get an Otto on each boob, right?

One last thing for you rule-followers who haven't clicked yet. There's a bandage below my left shoulder. (Yes, it's the left. Since I was looking in a mirror to take the picture, you don't have to reverse the image to figure out left and right.) That is from the surgery I just had a few hours ago to put in my port. Underneath that bandage, and then shallowly under my skin, is a place to access a juicy vein so that I don't have to have IVs in my arm every week during chemotherapy.

Okay, done with the explaining. Here's the picture of what I look like, 20 days post-double-mastectomy.

Monday, April 2, 2012

Why Chemo?

I'm doing another FAQ post, like the one I did when I was first diagnosed. Next week, I'll start chemotherapy. "Hey wait," you might say, "Didn't you just tell us that your scans are clean? Isn't the cancer gone?"

That crossed my mind, too. So throughout this process, I keep asking questions that can help us understand the reasons behind my treatment.

During my initial meeting with Dr. Cooper (surgeon-extraordinaire), I told him that before feeling this lump and having a mammogram, ultrasound, and biopsy, I was the happiest person around. I asked, "What would happen if I ignored this whole string of events and went on living my normal life?" Now, I won't repeat exactly what he described, but that 2.5 centimeter tumor of cancer cells in my right breast would have made my life miserable pretty quickly. (The charts always say 5-year survival rate, and I'd certainly have been on the wrong end of that one.)

Then I went ahead and had him cut the offending boobie and it's left friend off. He also found some cancer in the right lymph nodes, and they're gone as well. So of course, I had to ask again. "Dr. Cooper. What's my do-nothing prognosis now?" This one wasn't as certain. "Well," he said, "You'd probably pass that 5-year point. And we don't know for sure that the cancer would ever come back. But it probably would. So that's why we're being aggressive with your treatment and sending you to an oncologist."

At that point, we didn't know that the CT scan and bone scan would be clear of cancer. In fact, there could have been another tumor in my body, but there wasn't. We cut out all of the tumors. Yay! Right? So why should I put myself through this chemotherapy poison thing?

The fact is that my body doesn't have any visible tumors, but the odds are that some of the cells from that original tumor escaped into my blood stream and are still there. There's really no way to find out if they're there and where they are. There are these teeny-tiny cancer cells floating around in me. They could do that for a long time. Or my body could fight them on its own (something called apoptosis that my new friend Katie told me about). Or one of them could start dividing and cause a tumor somewhere else (that metastatic thing I mentioned the other day). We have no idea what will happen and when.

But I think you'd all vote with me that we might as well do something about those floating cancer cells. And my choice is to do lots of things. Whatever is out there, I'll do.

Now again, after the clear scans, I posed the, "What's my do-nothing prognosis?" question to the chemo team. Dr. Kirshner printed me my actual survival rate percentages from a site called adjuvantonline.com. (Unfortunately, I'm not a doctor, so I can't get on.) This one talks about the chance of a relapse within ten years. Now, I've got a 31.4% chance that I could do nothing and be cancer free for Maggie's Bat Mitzvah (um...yeah...I don't think she's having one, but that's besides the point). With chemo and hormone therapy (another drug regimen I'll take for five more years after chemo ends), it's up to 70.6% chance of no relapse. And I'm going to throw in some radiation, too, which wasn't on his little printout. Maybe I'll be up in the "chances of being killed by a terrorist" range after that.

During my chemo-teach, I asked Maggie the same question. Though she didn't have the adjuvantonline calculator, she said that she'd track me down at home and drag me in for chemo if I was planning on stopping right now. I wasn't, but just like the reassurance that I'm doing the right thing.

So, what the chemo drugs will do is target the fast-growing cells in my body. These include hair, nails, the lining of the stomach, and the insides of the mouth. Oh yeah, and cancer cells. It's been done for years, and the most effective drugs for my type of breast cancer starts with a combination of adriamycin and cytoxan and is followed by taxol. They're new words to me, too, but I'll know them well soon enough.

Is there a chance that all of this is for nothing? Yes. I could be in that completely cancer-free minority right now. Or I could relapse anyhow. But a bunch nausea and fatigue over the next few months is totally worth the extra percentage points I get from taking my poison.

Let's go, chemo!

It's Raining!

A couple weeks ago, I wrote about finding a way to make these upcoming months, with me facing 20 sessions of chemotherapy, enjoyable for Maggie (age 4) and Reese (almost 3). We have decided to keep them occupied at summer camp and purchase a backyard swingset. That is, we're spending money.

Like responsible, rule-following, 30-somethings, Paul and I had set aside a couple months' salary in a savings account, "just in case..." Although I always thought that the money was for a job-loss scenario, we've decided that it's time to start spending from that account. Paul's words were, "We were saving for a rainy day, and it's RAINING!"

When a few friends began to offer us money to help us through this unexpected bump in the road, I was originally feeling uncomfortable accepting. We are not in dire straits or on the brink of financial disaster. We have a great health insurance plan (thanks, SRC!) and can make prudent choices with our money.

However, my wonderful friend Karen has relentlessly assured me that our long-distance friends WANT to help. We shouldn't have to use up our savings to have a lawn service or house cleaner this summer. I should be able to buy a pretty selection of head-scarves and new sweatpants to stay comfortable as my body changes. And the girls should enjoy some extra toys and activities to help make the changes in their lives a little easier to swallow.

Therefore, I have set up a donation widget (below) as a way for you to help if you want to. I don't think it shows up on iPads or mobile devices, but let me know if you find other glitches. The end date is the projected last session of chemotherapy for me, a light at the end of this tunnel.

All of your gestures of kindness: food, childcare, advice, hugs, emails, phone calls, and Facebook "likes" are sincerely appreciated. I am opening this up as one other way for you to help, with love to everyone for their support.

(Note 4/4/2012: We have been receiving the money you've sent, but it's not updating here. I don't know why, as I'd love to have your names scrolling across, but I just want to reassure you that this works.)

(Note 4/5/2012: Yay! It's scrolling. I didn't do anything at all. It's not mentioning Kerry H. and Karen S. because I had been using another glitchy widget, but they are just as appreciated.)