Friday, March 25, 2011

This is not your fault

I know I often put on a brave face here on this blog, but I'm going to be honest for a moment. This Xeloda and Tykerb drug combo is no joke, my friends. I am struggling these days with feeling old - much older than my 27 years. My Xeloda- Tykerb combo is doing some serious damage to my feet. There is nothing quite like literally hobbling around the house to make one feel like a 90 year-old.

Every girl will agree, a great pair of pumps can make even the most tired girl stand taller, look thinner, and feel beautiful. Sadly, I can't even get my aching, throbbing, red, peeling feet into a pair of flats let alone a pair of pumps! I've taken to watching E! news obsessively for hours. I stare enviously at the beautiful starlets in Christian Louboutins on the red carpet. You never see Angelina Jolie hobbling, or wincing in pain, or even stumbling in her heels. I want to throw my slippers at the tv when the latest hot young thing from Hollywood says "Oh yes, I'm wearing Dior and Jimmy Choo!" You know what? I'm wearing Target Fuzzy Socks, thank you very much.

I think I might buy myself a pair of fabulous pumps as motivation for getting better. How much is too much to spend on shoes? Anyone have a pair of Jimmy Choos they want to lend me? I promise I won't actually wear them, I can't actually wear them, but I will put them in front of my bathroom mirror for a daily dose of motivation. I want to get my old acne-free, pump-wearing self back. Like an alcoholic going to sit in a bar on a Friday night, or a woman on a diet heading to the ice cream store, my nightly dates with E! news are not healthy. Looking at The Beautiful People only makes me feel older. Even though the weather is getting more springlike, I'm still a slave to my very unfashionable UGGs; the sheepskin interior is heaven for my peeling feet. Oh, the joys of breast cancer! Thank you, breast cancer, for making me feel like a slob.

The drug insert that comes with my chemo pills mentions this side effect. They gave it a medical name to make it sound more tame and manageable. They call it "hand/foot syndrome." I haven't yet hit the "hand" part of the syndrome, thank god, but the fire in my feet is making me feel "elderly".

For six years of this battle, I have managed to keep my self-esteem up. I always felt like a young lady. I always felt my age and rarely had self-esteem issues. Even after losing both my breasts and my hair, I always had my spunk, but these past two months have been hard. Between the acne-rash on my face and these burning feet, I fear I am losing my sense of self. Remember that I am a walker. I walk the Susan G. Komen 3-Day for the Cure every year. I also coach other 3-Day walkers and help motivate them to walk 60 miles. I walked 120 miles in back-to-back events, just three days after getting out of the chemo chair. I may not be able to run around the block, but walking was something I was always able to do. It gave me hope. It empowered me in the midst of my treatment. I love walking. What will I do if I can not walk?

From a practical perspective, we live in the city and I walk everywhere: to the library, to church, to the coffee shop, to the grocery store, to the theater, out to dinner. You don't want to move your car in downtown Boston if you can help it! Now, I can't walk from my bed to the kitchen without pain.

This venting of my Xeloda frustrations was going to serve as a very selfish blog post, but last night, as I was folding laundry and Big Man was grading his students' essays, the old husband gave me another topic to discuss. I tried to stand on my tip toes to reach the fabric softener that is stored in a cute little basket on top of our machines. This is an action I have taken millions of times before without even noting it or thinking of it. This time though, the fire in my feet wouldn't let me accomplish my task. Cancer intervened. I couldn't reach. My toes screamed in pain every time they touched the ground.

I asked the Big Man for help and he did what husbands do everyday...he criticized. He expressed an opinion. An unkind, unsolicited opinion. The very worst kind of opinion: a husband's opinion.

The Big Man asked me in a frustrated voice, "Bridget, have you even been USING that Burt's Bees foot cream?"

Yes, as a matter of fact, I have been, thankyouverymuch. I cover my feet and I put them in socks every morning and every night before bed. The smell of the" healing" coconut oil follows me everywhere I go.

I told him as much and Big Jerk replied, "Well, have you been re-applying? I mean, clearly, you haven't been putting it on often enough. You know, you can't just put it on once and expect it to make a difference."

I'm not trying to throw Big Man under the bus here. Well OK, maybe I am, but more than that, I'm trying to make a universal point by sharing this story. The implication that I might be doing something wrong, that I was doing something to cause this pain in my feet, that this side effect was somehow under my control. Well, that implication made me want to throw the fabric softener bottle, open, right into Big Man's handsome, smug face.

Nothing I can do will make this hand-foot syndrome better. The creams I am putting on will help me to cope, but only going off the drug will heal me completely, and going off these drugs is not an option for me right now. Nothing I did caused the hand and foot syndrome. The drugs caused this. I have learned throughout this cancer journey that I will do my very best, anything less is unacceptable, but I will not beat myself up or feel like a failure for being unable to walk to the kitchen. I'm feeling so sick these days that I'm going to be generous and gentle with myself.

My point is: Remember, people, guilt will get you nowhere. None of this is your fault. Let that thought go. Fight that.

That has been the hardest thought to get out of my head since the moment I was diagnosed. My very first thought was, and still is, "What did I do to deserve this? How could I have prevented this? What do I need to do to fix this?"

I put my UGG boots on earlier this week and hobbled my way to the Boston Public Library to pick up the book The Emperor of Maladies. It talks about why cancer is so darn difficult to cure. Cancer is truly the Emperor, the King, of all illnesses. Did you know breast cancer was first mentioned in ancient Egyptian times? And do you know what they did in ancient Egypt to "cure" breast cancer? Well, they cut off the breast and they treated with a potion of herbs.


We've come a long way, baby! That doesn't sound anything at all like what I'm doing!

My point is, cancer is insanely complicated. We need to respect that and to give ourselves a well-deserved break. After decades of research, we are still unable to find the cause, the smoking gun. Instead of a smoking gun situation, cancer develops in a Murphy's Law type of environment. You may have had a genetic predisposition for developing cancer, but that alone is not a cause. You had something in your body that made you prone to it and then Murphy's Law kicked in. You were exposed to something in your environment, or your immune system was compromised, and your body lost its ability to keep the Stage 0 cancer at bay. Somehow, somewhere, something happened that turned those benign, pre-cancerous things into cancer, but that alone was not a cause. It was an unlucky coincidence, a tragic confluence of events. If you had always exercised and followed a vegan diet, you might have decreased your chances of developing cancer, you might have minimized your risk, but the cancer might have developed anyway.

There is no single moment in time that we can point to and say, "That right there, that did it."

So let that question go. Let the guilt go.

You did not cause your cancer.

The side effects of the drugs you are taking are not your fault.
Don't apologize as you lay across the toilet for the inconvenience that you are causing your family.

Don't play into the Big Man's blame game. He is only expressing his own frustration and sadness.

By all means, do your best in this fight. Bring your A Game. Do all that you can, but stop beating yourself up about this. Eat well, not because you want to cure your cancer or because you think that eating well is going to keep you safe from all the scary things that life throws at you. Eat well because eating well makes you feel better. Exercise because it makes you feel good. Slow down and stop stressing because that is a good thing to do.

When I was first diagnosed, I started eating tons of fish. I stopped drinking. I cut out caffeine. I drove my poor father crazy. He turned to my mother after one particularly fish and veggie laden meal and said, "Enough with the salmon with mango salsa and broccoli rabe. Can't I just get a steak and some potatoes?"

It worked for a time. I never felt better and the scans showed that the cancer kept shrinking, and shrinking, and shrinking. Then one day, about 10 months after I started treatment, the scan showed growth. I didn't stop eating well. I cook from scratch at home six nights a week and we eat as much broccoli and spinach and sweet potatoes and anti-oxident rich foods as I can find recipes, but I continued eating well because I felt better when I choose well, not because I thought it would cure me.

The same is true with yoga. About four years ago I was in the best shape of my life. I discovered yoga and I loved it - still do. I was training for two 3-Day events, and when I wasn't walking I was at yoga class. I felt strong and I felt for sure I would beat this disease because I was "in the best shape of my life." And then one day, I got a phone call. They saw a new spot.

I'm not saying that this is hopeless. I most certainly am not asking you to stop exercising or eating right, but I am asking you all to change your perspective and your focus. In this very modern society in which we live, we believe that everything is within our grasp. Everything is under our control. It is very scary to think that maybe, perhaps, we have less control over our lives than we would like to think.

I saw a news report this morning that said going to church increases your risk for cardiovascular disease. How ridiculous a news report! Enough! Enough! Enough! Who was paid to investigate that? Why are we spending money on this wasteful research? Our news reports are so full of mixed messages! Instead of focusing on the cause, can we please focus on the cure?

I'm doing my best. I can do better. But I did not cause this. Can you make that your mantra?

Yes, I should have boozed less in college, but I can't turn back time. Agonizing over every decision I made will only waste precious time. Instead, I'm looking toward the future. I'm looking toward next Tuesday, which is the day I finish this Xeloda regimen and get a glorious week off from the painful drugs. That week I can't wait to head to yoga, take a long walk, and maybe wear a pair of pumps.
I beg all of you to do the same: stop feeling guilty, stop beating yourself up. Learn to give it up to God, and focus on doing your very best.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.


Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;

That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr

15 comments:

Cheryl Woodsom said...

Bridget, if you can't walk when it comes time to do the 3day in Boston, the Tough Warrior Princesses will carry/push/piggback you - whatever you need !!

melissa said...

Hey Gorgeous,

A couple of things. When those celebs wear pumps they are dropped off in a limo and picked up ( they don't walk :). When they take them off, they wear Uggs! At least hear in California. So, you ARE fabulous! But you already knew that.

I love reading your real, raw and beautiful words. If I had pumps I'd send them, but I'm a sneakers and flats and Ugg girl.

Jenny said...

"What will I do if I can not walk?" Oh dear Bridget, if you cannot walk - you'll sweep... or be carried... or be piggybacked. (Thanks Tough Warrior Princesses for offering your services!) And you will embody the 3-Day spirit, as you always do, knowing all the way the truth - that the 3-Day isn't actually about walking 60 miles. <3

Jennie said...

Hey, Bridget! I've been thinking of youuuuu! You are RIGHT. NO GUILT! Wasted, unnecessary time and energy...and this inculdes "Boozing in college" - I too went to a school in Boston (Go Eagles!) and those nights spent going bonkers with friend were food for memories now. NO REGRETS! I don't think you kicking up your heels and toasting the nights away with your friends impacted the Emporer of Maladies that you so gorgeously face now. The Emporer of Maladies is really the Minion of Maladies in the reign of your spirit. YOU GO GIRL. (And I'd love to party with the Warrior Princesses...our team is Big Buoys of Annippleis, Maryland). xoxo TO ALL!

Julie said...

I want to echo what the previous commentors said and add a bit.

The friend I lost to BC was a vegetarian, organic gardener and had NO chemicals in her home. It didn't matter. The big roulette wheel of life dumped the cancer ball in her slot. She, nor anyone else, deserved it.

Here's a tip for something that may give your feet a bit of relief. Look for a cream called Traumeel. It is a topical anti-inflammatory and analegsic. It's available at Whole Foods, some drug stores and via Amazon.

You're in my thoughts.

melanie goes pink said...

I wish I had a fabulous pair of heels to send you! And I 2nd what Cheryl says, if you are participating in the DC 3 day and can't walk, Me and The Girls will also carry/push/piggyback you! You inspire me each blog you write, it would be the least I could do for you...You continue to be in my prayers Bridget! And that's right, this is NOT your fault, you DON'T deserve this.

Liliana Holtzman said...

Be generous and gentle with yourself, dear Bridget, and take it one hour, one minute, at the time!

I was in Boston last week, visiting my son. I thought of you, and hoped that you were well. My son gave me the book, The Emperor of All Maladies, as a present.

You are a wise, wise girl. My very best to you,
Liliana

Katherine said...

Hi Bridget
Don't know if you have checked out bc.org.

Here's a recent discussion you might find of interest:

http://community.breastcancer.org/forum/8/topic/766593?page=1

Rock on
KOB

Katherine said...

http://runningahospital.blogspot.com/2008/08/henna-xeloda-roche-europe-august.html

Hi Bridget,
I have not been on Xeloda, but some people suggest Henna can provide relief from hand/foot syndrome

Bridget said...

Katherine, you are an angel! I loved reading that BC forum. So many women said Xeloda did the trick. I am excited and encouraged. I've got my aloe socks ready. I just finished my week off treatment. My feet are feeling well, but I restart Xeloda today. Fingers crossed that it's working and that I tolerate it a little better every time.

Thank you, friend!

http://ihatebreastcancer.wordpress.com said...

hi Bridget
Glad you checked out the breastcancer.org post. www.mbcnetwork.org has a lot of good info also.

Katherine said...

P.S.,

FYI, my pop grew up in Boston in the 1940s. As my grandfather graduated from BC in 1916, a time when football wouldn't have been widely played, I asked my uncle how he learned the game. You might know some of the places he mentions. Rock on,
KOB

Kathy, I learned to play football on a bunch of strange field in JP. Both field were adjacent to Jamaica. The first field was long and narrow, with a very busy street on one side and a big drop off on the other. The other field was a long rotary area and again it was surrounded by streets,not just neighborhood streets,but the Jamaica Way which was also US Route 1.

When I was in the 8th grade we had a neighbor who had been a head football coach at the high school level who coached a group from all over JP. Our big games would be against The Working Boys Home! run by the Xavier Brothers. The also ran and continue to run several Catholic High Schools in Mass. Working Boys Home had a legitimate 100 yard field with goal posts and the team had Notre Dame uniforms and gold helmets. We had a bunch of second hand equipment and your Dad bought me a helmet and jersey.

I played three years of high school football, my first two for Boston Technical HS. The school was located where the Prudential Center is and our practice field was in Cleveland Circle right next to BC. Everyone came and went by public transportation and carried the big bag full of equipment on thebus and street car and then back to school the next weekend.

After my sophomore year I transferred to Boston English and when you transferred you were ineligible to play any sport for 90 days. I played my senior year,but injured my knee early in the season and spent the next 8 weeks walking from the school three days a week to the Boston City Hospital which was about a mile from the school.

When I was going to BC I played one year of semi pro football. Your dad loved me telling me stories about this Damon Runyonesque team and how we would gather before and after night practice at the Jet Cafe, an Irish Bar in Forest Hills. A classmate at BC, a former Marine in the Korean Conflict recruited me to play. I was a junior at BC and I was the youngest player on the team and the smallest lineman at 230lbs. It was an amazing experience.

Cindy said...

Hi Bridget, Elvie sent me your blog, keep up the fight! You have been in my thoughts over the years...(it's been a while since the Baltimore magazine days!) you are inspiring! I know you have touched many people in many ways over the year. Sending you all the good karma I can muster!
-Cindy Carson

The Act of Returning to Normal said...

I've just discovered your blog - thank you so much for sharing this.

Frank said...

Bridget
I was wondering if you had seen the findings from a study that study promoted medically viable evidence of the benefits of yoga and the impact on arthritis and fibromyalgia.
http://www.dailyrx.com/news-article/rheumatoid-arthritis-and-fibromyalgia-patients-live-better-yoga-13837.html