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.

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.)

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):
	Brown
	Blonde
	Grey
	Curly
	Straight
	Frizzy
	It won't grow back
pollcode.com free polls

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.

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.

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.

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.