Tuesday, May 7, 2013

Happy Birthday

It's my birthday today and I feel lucky. I've always loved the presents, well-wishers, and chocolate cake - but birthdays are way more important now.  No surprise, right?

A few weeks ago I had my last Zometa treatment. After 3 years of going every 6 weeks for an infusion and blood tests, I was released back into the wild. Sure, I'm still on massive doses of Tykerb and am on intimate terms with the famed Tykerb rash, but I got 2 days per month back. The day spent in the oncologist's office for my exam and infusion, and the one three days later, when I would feel like a truck ran over me. That's 2 days every six weeks that were "cancer days" instead of Andrea days.  Turns out,  those days start to matter. They matter ALOT. So I really can't be bothered fretting over the creases that are getting deeper every time I smile (can't really call them laugh lines anymore - more like laugh canyons), and the fact that no amount of watering seems to make that boob grow back. I'm going to take every good day that comes my way and milk it for all it's worth - and today is a good day!

Sure, I still feel insecure about my future. Those doctor's appointments, though draining, were also a reassurance every 6 weeks that I was ok.  That there'd been no change. No spike in tumor markers, no sign of anything new and ugly rearing its head. Those infusions, though occasionally debilitating, were also part of a treatment plan.  Many women feel a little lost when they end treatment.  It's a huge relief, but there's also that piece of you that wonders, "Now what?" Is it really safe for me to be out here on my own?

Of course I have that little voice in my head that says the farther out I get, the higher the risks. Today, though, I'm telling the voice to be quiet - that it's pretty much the way life is, right? The farther out you get - the riskier it seems.  But today's my birthday. So today, as I celebrate turning 45, I'm really celebrating. Come to think of it, I think I'll celebrate tomorrow, too.

Sunday, October 21, 2012

I think I hate Pinktober

I think I hate Pinktober and I feel kind of guilty about it. As a breast cancer survivor, shouldn't I be waving the pink flag and walking and running my feet off? Shouldn't I celebrate the fact that there's a whole month dedicated to breast cancer awareness? Instead, all month long I am filled with conflicting emotions. I'm grateful for every penny that is raised for research for a cure - but I'm so "aware" that it drives me a little crazy. Every single time I go to the grocery store during October, the checkout clerk asks me if I want to donate to breast cancer.  That's what they say, too. Not, "Do you want to donate to help find a cure?" Or, "Do you want to donate for breast cancer research funding?" NO - they say, "Do you want to donate to breast cancer?" And it takes all of my willpower to keep from saying, "No thanks, already donated a breast."

Don't get me wrong - thank goodness for the millions of dollars raised by pink-wearing NFL players, yogurt cups with pink ribbons and companies that give generously during Pinktober. It's just that I have a very strong emotional response to the flood of pink out there. I wish we could keep the message simple. Let's put those resources toward developing vaccines and treatments that don't make you feel and look worse than the disease itself.  Let's donate to fund research for a cure - because someday I'd really like October to go back to its original colors of red, gold and orange for Fall.

Monday, October 1, 2012

Risky Business

Remember when life was simple? Sure, maybe you were exhausted from taking care of the kids, or from working. Maybe your biggest worry was how to get rid of those extra 15 pounds that just wouldn't budge. Ahh, those were the days. Now we have to worry about weighing the risk factors of almost everything. Do I dare buy those non-organic berries even though the organic ones are 3x as expensive? How many supplements should I be taking to prevent a recurrence, and..... the mother of ALL worries - how do I determine whether the side effects of the medication are worse than the risk of not taking it?

Now I'm not talking about chemotherapy, because at this moment in time, the benefits far outweigh the side effects in the long run.  Those are the real statistics, folks. I'm talking about the other medications that so many of us are taking as follow-up prevention. Whether it's Tamoxifen, Tykerb (that's mine), Herceptin, Arimidex, Zometa (also mine) and a whole bunch more that I don't even know the names of, they ALL have side effects. By now you know that I'm the queen of talking about side effects.  Sure, my hair has completely grown back  - Hallelujah! - but all these drugs are powerful and they ALL have side effects.  Some of them slam you right from the start, some of them creep up on you over time, but read your package inserts people! They don't make that stuff up. It all comes from somebody somewhere reporting those symptoms.

So what do you do when your doctor says she thinks maybe you should stop taking DIHBIHM (DrugIHateButIsHelpingMe)? Perhaps it's time to consider the risks.  I hate considering risks. First of all, I don't have a good history with them. I had extremely low risk factors for having breast cancer, and we all know how that turned out.  Risk factors are statistics and I hate statistics. My husband loves them. He takes comfort in them and understands them.  Personally, I just see the small numbers and assume they have my name on them. What's a little heart trouble compared to going through chemo again? What's a little bladder spasm or horrific muscle pain among friends?

The good news is that you and your doctor really can make informed decisions that weigh the real risks of your side effects versus potential benefits. The information is out there and your oncologist knows the numbers and can help you navigate your choices.

TOP 5

1. Discuss exactly how debilitating your side effects are with your doctor. Don't sugarcoat it because you're afraid to stop taking the drug. Be honest.

2. Talk with your doctor about the real risks associated with stopping. Make sure you are comfortable that you've been given ALL the information.  Perhaps schedule a separate appointment where you can focus just on this so you're not feeling rushed.

3. Discuss your fears openly with your doctor.

4. Ask about alternative drugs. Sometimes there's an effective, but perhaps more expensive, alternative to what you're currently taking.

5. Don't assume that if you stop taking the drug, the cancer will come back.  You may be able to stop for a while and then go back on it, or maybe you've taken enough to get the majority of the benefits already. Once you've made the decision, don't be afraid to change your mind and revisit the question later. You're a woman - it's your prerogative to change your mind.

Thursday, September 20, 2012

Radiation - What it's really like to have treatment


PREHEAT

You mean I have to go every single day? Five days a week? The sheer repetitiveness of radiation seems overwhelming. It’s almost impossible to imagine having any kind of treatment on a daily basis. Aside from the obvious physical drain -  what a time suck, right? The amazing thing is that, unlike every other doctor’s office, the radiation department works on time.  I know, shocking, right? Your first session will take a little longer, but from then on, you will be in and out of there in whatever time they tell you - usually about 15 or 20 minutes. It’s remarkable. Aside from any equipment issues that may arise, they really do keep that thing running like clockwork. And, every center I’ve heard about has free parking for radiation patients. Ask for your permit on your first day. SCORE! So, you can actually have a semblance of a life during radiation. Go to work every day, meet some friends, pick up your kids from school, etc.

  On radiation days (which, for me, was five days a week for nearly seven weeks), you change into a gown and sit in a waiting room with the other radiation patients. You can always ask for a warm blanket to wrap around your shoulders, if you need one. Then your techs call you back to your machine. You’ll probably be in the same room every time.  The techs may switch in and out, but of the two or three assigned to you, there is always one familiar face every day.

  I was kind of shocked when I went the first time, because there were men in the waiting room in their drawstring pajama bottoms. I don’t know why it never occurred to me that radiation centers deal with all kinds of cancers, but I just never thought about it; and then - there they were, all looking rather sad and vulnerable. So, just letting you know - you’re going to see it all here at the Cancer Club. And sometimes the view is not pretty. However, there’s a sense of community in all these waiting rooms. You 're all members of  the same club now. Different chapters, but still the same club. 

   If you’re the chatty type, it’s easy to strike up conversations in the waiting rooms because you see the same faces every day, but I found that conversations rarely crossed the gender gap. Too up-close and personal is my guess. Everyone I talked to found their radiation experiences to be the most convivial of all the treatments. The techs, nurses and patients all seem more willing to share than in the other wings. I think it’s because, for the most part, people feel pretty well when they undergo radiation. They may be a little crispy by the end, but they’re still cheerful.

BAKE

    What’s radiation like?  The daily experience is not that bad. This is how it works: Now that you have the tattoos, all they have to do is connect the dots. Literally. After you check in and change into a gown, a lovely person calls you into the radiation room. You have to walk through a super thick door with one of those nuclear signs on the door. You know - the kind with the three triangles. That, in itself is kind of freaky.  You untie your gown and lie down on a narrow table. I took my wig off in there, too. I figured if I was lying with my gown open looking like I'd had a fight with a magic marker, I might as well be comfortable.  These techs have seen it all!

    The machine is behind the table and after you lie down, the tech moves the table with a remote control so it slides back toward the machine. Then they manipulate you so you are in position. They line up your dots in the beam field so they radiate only where they’re supposed to. Everyone will try very hard to make you feel comfortable, but you’re probably not very comfortable -  and you’re totally exposed. Try to relax and while they manipulate your body by using the sheet you’re lying on; they pull it and roll you just a little at a time. The table moves up and down and side to side until it’s exactly right. Then a large, round piece of equipment moves around you into position. During all this time, one tech is most likely drawing on you with a sharpie or washable pen. Just think of yourself as a specimen on a microscope slide. When everything is all lined up, the techs leave the room. The machine clicks and then buzzes, and, usually, a sign that says “beam on” lights up. Depending on your position, you may or may not be able to see it. Next, the door opens and they come back and move the table to the next position.

  There’s no pain from the radiation itself. You may have muscle pain later from being in an awkward position, but the beam causes no sensation at all. Really!  My arm and hand went numb from how I was positioned, but that’s about it.

  The most important thing you can do for yourself is to be religious about after care for your skin.

TOP 5

1.  Ask them to put a warm blanket under you on the table. Boy, do I love warm blankets. 

2.  If they have to use a bolus – a heavy bubble wrap-like sheet that’s used to moderate the amount of radiation on certain areas - ask them to lay it on your legs first to warm it up. Otherwise they plop it on your skin, and it’s freezing!

3.  Apparently, the worst reactions to radiation occur when your skin rubs against itself.  The only way to prevent this from happening is to keep your arm raised as much as possible. I’m not kidding!  If I could do it all again - and I pray nightly that I never, ever have to do any of this again - I would walk around with my hand on my hip and seriously do everything I could to avoid having anything rub against any part of radiated skin. Let me tell you - it would be worth it if you could save yourself from the pain of the burning, cracking, peeling skin.

4.  Bring 100 % Aloe gel with you every day and apply it right after treatment, while you are getting dressed. Following every treatment, apply calendula cream (or whatever cream your doctor recommends) three times a day.  Basically, apply all the right creams, as much as you can. Just remember not to put on anything BEFORE treatment.

5.  A nurse friend of mine also told me to use a saline wash (1/2 tsp salt in a bowl of lukewarm distilled water applied with a clean lint-free cloth) once a day as close to the treatment as possible.  Most doctors recommend it when the skin gets really red, but I started right away. You can also apply cornstarch to the skin; it’s very soothing. 

Monday, September 17, 2012

Thank you

I want to express my appreciation for the people who reach out to me after finding my blog. Your stories mean so much to me and I'm grateful I can offer even some small help for what you're going through. Thank you all for your kind words and I will continue to do my best to share what I have learned.

Monday, August 6, 2012

Radiation - The Tattoo Session Nobody Talks About


I’m calling this the KFC phase. Kentucky Fried Chicken. Or Kindle (not the e-reader) Fry, Char.

Ok, it’s really not that bad for most people but you will get crispy, and not in that teenager-sunburned-at-the-beach-wearing-coconut-oil kind of way. More in the your-mother-told-you-to-wear-sunscreen-but-you-forgot-and-spent-the-day-on-a-boat-in-the-lake kind of way.

There is actually a little preparation the doctors put you through before they start radiation, and nobody told me exactly what it would entail. Or maybe they did; but I was so hopped up on steroids and chemo drugs that it didn’t sink in. Here’s a summary, in case you too have chemo-induced brain fog:

PLANNING AND PLOTTING

 First come the planning sessions, where they basically plot a graph on you and tattoo you - ouch! The tattoos are marks that, later on, will help the technicians align the radiation machine. The idea is to identify exactly where to aim the beam so that it destroys all the cancer cells, and as few healthy cells as possible.  To figure it out, they put you into a CT scanner, which lets them map your body.  That first day you start out feeling like a drawing pad, because they really mark you up with ink and sharpie pens.  Then they take the key points and use a needle to tattoo them.  For those of us who are uncool enough to still be ink-free at this point, here’s a heads up: getting a tattoo stings - it’s a needle stick through an ink spot, and some hurt more than others. The tattoos themselves are just tiny bluish dots. They’re barely visible, but they are permanent. Nobody told me that. It’s as though they think you won’t care because of all the other stuff you’re going through. I’m sorry, but I care about any permanent mark that’s being made on my body. Especially the ones I didn’t choose. Scar or tiny black dot. They really are teeny tiny dots, but hey, I didn’t put them there! I was hoping for a little heart or something. Maybe a unicorn, but you only get dots.  Thereafter, every time you go for treatment, they use those tattoos as guides to focus their lasers and pinpoint the radiation.

The tattooing session can also be painful because they have to put you in whatever position they need to repeat during the radiation, so make sure you stretch before and after. The tattooing techs may not be the same as those who will actually perform the radiation; these are just people who make the blueprints - on you.


I’m not going to lie: I whined a lot during this session. I’m not sure why. Was it because I’d already been through so much and I’d just about had it? Was it because I was still in pain and recovering from surgery and chemo? I don’t know, but I’ve talked to lots of people and everyone seems to be have been surprised by this process. I wasn’t the only whiner. I’m guessing it has something to do with the lack of a decent warning. I think most radiation oncologists bypass an information session on the prep portion of radiation. Personally, I hate surprises unless they come in a velvet box, so I’m giving you a heads-up. This is not horrible, but the tattoos do hurt and the session can be uncomfortable.


TOP 5.

1. Wash off the marker ink as soon as you can, because otherwise you can get a shadow where they drew on you and it takes forever to wear off.

2. Stretch before you go – especially the area around your surgery – and take pain medication about an hour beforehand if you’re post-surgical, because you may have to hold an awkward position during the initial setting-up process and it can hurt. Even something as basic as Tylenol helps.

3. Be prepared for multiple tiny but ouchy pinpricks. The number of spots you’ll get depends on how many sites they have to radiate.

4. Wear loose clothing and try to leave your modesty at the door because you’re going to have to bare your chest.

5. Do not make tattoo jokes to the technician - they don’t think it’s funny.


Friday, July 13, 2012

Cancer is Scary - no matter what stage or age

I recently spoke with a woman who told me she had been unsure about contacting me because she wondered whether her own experience with breast cancer was bad enough to warrant reaching out. She felt guilty about coming to me because she felt that she hadn't suffered enough compared to what I had gone through.  I felt sad hearing her describe how her age (over 50) and her treatment (lumpectomy and radiation) made it seem like she should be having an easier time or feeling lucky that she hadn't needed anything "worse". As though a lumpectomy and radiation are a piece of cake. HAH. Only if the cake is filled with burns and fatigue that makes you feel like you're wearing a lead suit and the icing reads: This may be your last birthday. Pretty messed up cake.

Where do we get these feelings? Sure, it could be worse. Does that mean we're lucky if it's not? Is any cancer victim supposed to feel lucky that their diagnosis isn't worse? These are things that well people say to us because of their own fear. It's their own need to rationalize and make it all ok. I actually had a "friend" tell me I was lucky I was bald because now I didn't have to deal with washing and styling my hair all the time. Are you kidding me?

Regardless of your diagnosis, age or treatment plan - cancer is terrifying. Period. You're dealing with something that isn't very well understood, and leaves you with great uncertainty about the rest of your life. All cancer treatments are debilitating in many ways. We read about mastectomy and chemotherapy and we accept those as being particularly awful to deal with, but that doesn't mean that other treatments are easy. No way. Lumpectomy is surgery. Surgery that changes a part of what makes you look like a woman. It doesn't matter how old you are or how good the reconstruction, or how small the scar - still life-altering stuff. Radiation knocks you down, no matter who you are or how well your skin heals. You have to go every single day except during the weekend and walk into that room. The password to get into my club is cancer. That's all.

Sure, you have to find ways to get through the day without feeling sorry for yourself.  Sure, you have to remind yourself of the positives, blah blah blah, but some days just suck and there's no way around it. Some days you just have to give yourself permission to whine and feel sorry for yourself, regardless of how other people expect you to act.

Top 5

1. When you feel the need to whine, accept it. Don't judge yourself. You're going through hell and if your friends or family don't get it or are tired of hearing it, find a support group or email me.

2. Set a time limit for wallowing. Don't let it overwhelm you. Though it's important to express those feelings, it's not helpful to let them take over. I will say to my husband sometimes, "Can I just whine for  10 minutes?" Then I go through all the crappy things I feel. All the pains (big and small), fears and whatever else is going on. His job is to just listen and then say something like. "Oh honey, that sounds awful." No offering advice. No tips on how to change my mood or fix anything. Just empathy.

3. Reach out to someone who can understand. Sometimes it really does have to be another cancer victim. Your regular friends and family may not be able to hear you during those moments because they hate to hear that you're suffering. They love you and want it to be okay. They need it to be okay and when it's not - its freaking scary for them.

4. Have a response ready for times when people say something stupid like, "You're lucky." Even if you don't say it out loud. How about, "I guess I feel somewhat relieved that I don't have to...."  Of course, what you really want to say is, "I don't think anyone who has cancer feels lucky, you idiot." That probably won't go over too well, though.

5. Understand that the people who know and love you are scared and sometimes overwhelmed too. Maybe tell them what you need from them - including sharing that it's really hard to feel like you're not allowed to have a bad day. It's too much pressure to feel like you're supposed to go through treatment and put on lipstick and a happy face all the time. It feels lonely to have to put on a cheerful face for the world when sometimes you just need to get under the covers and cry a little.