A breast cancer survivor shares her experiences with the BRCA gene.

Saturday, May 10, 2008

Food for Thought

There's a bottle of cod liver oil on the top shelf of my refrigerator, and I take a swig -- straight from the bottle -- each morning. Gary finds this ghastly and refuses to kiss me. But I believe in the healing power of God & cod, so it's my daily drink.

I have always possessed somewhat suspect eating habits, which Gary has gotten used to over the years. But, from time to time, I can still push him over the edge of his tolerance level.

A few months ago, we were in North Georgia and stopped at an art gallery. While Gary was buying me a hand-crafted necklace at the check-out counter, I noticed a bag of "gourmet organic spiced dog biscuits" for sale. The owner of the shop explained that a local woman starting selling them once she discovered her dogs were crazy about them.

So, for $6.50 -- a king's ransom -- I bought a package for our Irish terrier, Riley, who was waiting in the car. Once we got back to the car, I broke off a piece, but my picky pup stuck his nose up in the air.

Along the ride home, I discovered the ingredients included all sorts of organic flours and spices. I never could tell which ingredient qualified them for being just for dogs, so I decided to try one.

They were, in fact, excellent, and I finished off the entire package. Gary was so appalled, he almost drove off the road.

I share this story for two reasons. One is to defend myself in the face of my "natural" food friends who think I gave myself cancer...I would challenge them to line up my diet against theirs any day. The other reason for this story is to emphasize the importance of accepting the food that others bring you while you're recovering. My husband was especially appreciative since my friends have saved him from all sorts of witches brews I would have concocted.

As a final note, I want to add that since the dog biscut episode, I have not been sniffing anyone's butt, and Gary tells me that my breath is much fresher.

Thursday, May 8, 2008

Why I Am Grateful

I know that many who heard I was having to undergo a double mastectomy and hysterectomy (actually, it was only an oophorectomy -- ovaries only -- as if that really makes any difference when you're having stuff pulled out of you) were a bit freaked out. Women, especially, have cringed in horror and thought, "Thank goodness that's not me!" I know this because that's what I thought whenever I encountered a woman who had breast cancer and had to undergo a mastectomy.

When I was diagnosed 7 years ago, I "escaped" having my breasts removed, and only had chemo and a lumpectomy. Whew! I was so relieved. And when I read an article last summer about a young woman with the BRCA gene who chose preemptive surgery, I was thankful that I didn't have to make that choice...until my oncologist asked that I be tested. Damn her.

So, here I am with my body cut up and rearranged and not quite ready for bikini season, but I can honestly tell you that it's okay. And, here's why:

First, I'm alive. When you're sitting in umpteen doctors' offices and mammography centers and chemo rooms, you come across others with breast cancer who have received a death sentence. And you wonder, why them? Why not me? How did I get lucky to live and they didn't? And they have small children they're leaving behind and they're only 35 years old, and that's too young to die. So, you're so grateful to get to live -- even if it's for just a little bit longer -- that you simply don't care what they cut out of you.

Second, with breast cancer, your connected to a community of some of the most amazing, inspiring women you'll ever know. Among this network, you find women who treat having a mastectomy like getting a manicure -- they're just that strong. So, you end up wanting to be as strong and cool as they are. And, if you're not as strong--that's okay, too. They help hold you up. You're never left alone with this disease; there's plenty of support out there.

And then, there's Roberta. She is the caretaker of Gary's mom. Roberta left Liberia years ago because of the devastating civil war. I asked her if she missed home and, of course, she said yes. She began sharing wonderful stories about life among her family and her village. But, soldiers came in and killed many family members and friends.

"I used to cry and cry all the time," she told me. "And then one day, I said to myself, "Roberta, you must be strong.' So, I quit crying and moved on."

If that wasn't enough to humble me, there was one other incident that put what I've been going through into perspective.

When I was nearing the end of chemotherapy 7 years ago, I was sitting in my oncologist's office complaining. Actually, I was trying to convince her to cut off treatment early because I was sick of it all--the baldness, the constant metallic taste in my mouth, a body bloated from steroids and a 20 pound weight gain. My good attitude up to that point was crumbling and I was frustrated and irritated. But she refused.

This occurred on September 10th, 2001. The next day, I watched TV footage of bodies falling from the top of the Twin Towers onto the street below, and I realized that I would gladly chose baldness, steroids, weight gain surgery, radiation and anything else associated with cancer treatment over having to make a choice as to whether to jump out of a 100+ story building or die in a fire.

It hit me that my life was a piece of cake...the life of a princess...compared to the hardships and heartbreak of so many others. And if they can endure, then by, God, so can I. And that's why I am grateful.

Tuesday, May 6, 2008

Another Point of View

Do you feel like your body is letting you down? Think of it as how strong you are to be able to fight off cancer as well as you have. And, you have to recognize cancer as an indiscriminate predator, and some victims are in better shape to fight it off.

You are one of those people who has taken great care of yourself with regular exercise and a very healthy diet, so you have done everything to arm yourself for any battle you must enter.

And God forbid, if it does come to it....you know i am your girl for chemo sessions! i admire you so much and love you even more. tammy

Monday, May 5, 2008

The Blame Game

Now that I'm facing the possibility that cancer is swimming around in my abdomen, I can't help but feel like I'm to blame somehow for igniting my BRCA gene. Was it because I didn't have kids? Lived in smoggy Atlanta? Drank diet Coke? All of the above?!

We love to blame ourselves. One of my doctors gave me some brilliant advice when I was first diagnosed with breast cancer: He said women often try to figure out what they "did wrong" to cause cancer...that if they could pinpoint a certain negative behavior, then they could have control over their body--and ultimately, their destiny.

But this is wishful thinking. Although there are lifestyle behaviors that enhance (or attack) our health, it's more complex as to why cancer forms. (See http://www.cancerquest.org/, an award-winning site developed by an Emory University professor who teaches the biology of cancer. His wife also is a breast cancer survivor.)

In fact, most of the people I know who have had some form of cancer have had the following in common: avid exercisers, healthy diets (vegetarian, wholegrain eaters, vitamin takers), water drinkers, non-smokers, juicers...and followers of all the Girl & Boy Scout rules.

When I was diagnosed with breast cancer, my friends freaked out, saying that if I, Miss Health Nut, developed cancer, there was no hope for them. They were, in turn, junk food eaters, lax exercisers, recovering smokers and didn't follow all the Scouts rules. Yet, their checkups so far have turned up cancer-free, thankfully.

All to say is that you only have so much control over your body. Still, since I've had cancer, many well-meaning individuals (some friends, some strangers) have offered their advice as to "why I caused my cancer." This, I would like to point out, is not helpful. When you receive a terrifying diagnosis, the last thing you need is a prude shaking her finger at you, telling you that if only you had eaten wheat grass, you could have avoided cancer.

You also get a lot of advice about treatment -- if you take supplements, eat a raw food diet, practice yoga and meditate, then you will be cured! I've heard of women who refused chemotherapy in preferrance to an "all natural" treatment. I want to tell them that death is all natural. But I hold my tongue, knowing that everyone has the right to decide how they want to approach cancer.

Having said this, I recently received an email from a friend who believes I gave myself cancer and dispensed advice as to why I'm finding myself (possibly) in the same boat after 7 years of being cancer-free.

Frustrated and somewhat paranoid, I forwarded her email to a two-time breast cancer survivor who is also a healthcare writer for her thoughts on the matter. Is the fact that I might have cancer again the result of my bad behavior? Was it because I drank that second glass of wine on October 28th four years ago?!! I had to know.

Here's how my wise friends responded:

Hi Julie,
Count me as one of your friends who eats red meat, drinks wine, and has not given up sugar. I do try and make better choices and eat more fruits and vegetables. I eat an apple almost every day.

I believe what I read about nutrition having an important part in keeping us healthy. I try to eat more antioxidants, tomatoes, blueberries, brocolli, etc. I don't think it hurts, but I don't think it's the perfect answer, just like chemo or radiation aren't the perfect answer.

The body is an amazing thing, and I believe works to cure itself if you give it a chance. Sometimes it needs a boost from medicine, so I'm glad for all the advances they have made. I also think that stress and emotions have an awful lot to do with cancer and other illnesses.

Several years before I got cancer the first time were very stressful with sickness of family and other events, and I was feeling scared and hopeless, so for me, the best thing I can do is to find healthy ways to relieve stress, like journaling, praying, walking, talking with friends and asking God to handle things I don't know how to. What seems to help me more than what I eat or don't eat, is the food I put into my mind. It's a daily journey, but I do feel like I'm healthier now than I was ten years ago -- maybe not in body so much, as in mind.

And then, there's my friend, who is a lung cancer survivor, who handled her diagnosis this way: She stopped being a vegetarian and started eating meat.

My kind of girl.

Sunday, May 4, 2008

Spiritual Insight

There have been countless ways my friends have cared for me throughout this ordeal. Some have made incredible meals. Some have sent beautiful flowers or plush pajamas. Some have sat with me during boring doctors' appointments or been with my parents during my surgery. And then, there are my praying friends.

I am blessed with several friends who have a strong faith in God and live out their life with depth and meaning. They also pray, so I feel wrapped in safety and love.

When I found I carried the BRCA gene and was going to have to face all these surgeries and body alterations, Mike, a minister friend of mine, told me, "I'm going to bow before the altar of God every day and pray for you." You just can't top a gift like that when you're feeling scared and alone and vulnerable.

And, then when the pre-cancerous cells were found, which meant I would undergo more exploratory surgery for cancer, I received a flood of email encouragement.

My friend, Laura, wrote: "I believe with all my heart that God will provide, but how is the question. Waiting, and remaining calm, is never easy--at least not for me, and I don't think God expects it. He asks us to trust, to have faith, but He knows us well enough to know how hard that is. You are in the dark about the future. You are not alone and God has placed friends close by to remind you."

Sue said: "My first thoughts are that God loves you so deeply. I know you will inspire others to live life as fully as possible, to love and help one another, and to trust Him in all things."

Casey added: "God is on top of this surgery, in it and all around it...and He is passionately devoted to your well-being.

I loved Cheryl's quote, which she had found when she went through life-threatening surgery this past year: "I, who have created time -- and you -- can take it away...can return it to you again. It's not up to you. Therefore, believe you have all the time you will need. You do."

Karen said: "I want you to know, I'm praying ALL DAY tomorrow during your surgery and I'll pray even more specifically for you to be cancer-free! Now, I'll admit that God and I didn't quite see eye-to-eye when you first got cancer several years ago; still, I have utter peace that you don't have cancer again."

Finally, I have a friend who summed up her feelings this way: "Well, all I can say is DRAT. That's how I feel about you going through chemo again. I actually just wrote a four-letter word, but I remembered I'm in an edit bay for a religious client, and they have a filter on their email and I'm quite sure I would be reprimanded for using such language. So just imagine all the fabulous cuss words I'm using in my head."

We all need friends who pray...and cuss.

Saturday, May 3, 2008

Round 2

Well, I'm back for Round 2 and preparing myself for another pummeling. After checking in with my 3 Musketeers-- my regular oncologist, surgical oncologist and reconstruction surgeon -- it has been determined that I will undergo my next surgery in a matter of a few weeks.

The interesting thing is that my oncologist and my surgeon had differing points of view about next steps. My surgeon felt strongly that I had nothing to worry about and pondered whether to put me through another surgery. He said if I were 80, he wouldn't consider it at all. However, he didn't necessarily want to take the chance that something could surface down the road. Ultimately, though, he left the decision up to MOI as to whether to have another surgery...and if so, when.

My oncologist had a totally different take on the matter. I knew she would. The obsessive-compulsive, hyper-diligent, perfectionist, worrywart that she is. So, I knew I would defer to her no matter what irritating advice she would dispense since I trust her above all humanity. And irritating advice it was. She said the pre-cancerous cells that were found in my fallopian tube during the last surgery were more and more common among BRCA patients, so she encouraged me to have the exploratory surgery "the minute my body was deemed healed enough to undergo it again." Drat and double-drat.

I found this both interesting and disconcerting: Here I am a fairly educated, well-read person with a background in healthcare writing, married to someone who works in the healthcare field and with many friends involved in healthcare as well. As a result, I have received lots of information and advice every step of the way. So, making an intelligent decision about which doctor was correct and whose opinion I should follow seemed simple enough. But what about all the women who didn't have the connections I did? How does the average person make critical decisions about their health when they receive conflicting and confusing advice from medical professionals?

Like I said, I chose on the side of caution with my oncologist, so that if, in fact, they do find cancer again, I'd rather know now...since timing is everything with this disease. I didn't want to kick myself one day and say, "If only I had done something sooner."

So, here I am, facing my next surgery -- to remove my uterus, perform an abdominal "wash" (to remove fluid and test it for cancerous cells) and check lymph nodes. In addition, since I never seem to do anything half-way, I'm going to have the rest of my breast reconstruction at the same time. Just call me the Bionic woman.

Last night, I awoke at 3 a.m. with my mind racing back to images from my previous surgery in February. All the needles jammed into my arm, struggling to breathe on my own and feeling like I was suffocating, the sterile hospital room, the drugs, the dizziness, the nauseau, the pain, the anesthesia, the fear. I stayed awake for the remainder of the night reliving my miserable experience.

I was hoping to postpone this next surgery until fall -- to give my body ample time to physically heal, and my psyche time to separate myself from the trauma. In fact, I had decided upon my last blog posting to take time off and simply focus on life. I needed a break from thinking and worrying about surgery and doctors and cancer.

So, I chose to enjoy the spring, which was magical this year in Atlanta. Warm, cool, sunny, rainy, stormy, breezy, fragrant, vibrant. I visited an organic farm and ate dinner on the grounds. I went bird watching in Fernbank Forest. I visited my favorite nursery and bought flowers and herbs. I gardened and worked until dusk cleaning up the yard. I took long walks in my favorite park that features a lake with geese and curving paths along rolling hills. I went hiking in North Georgia to the top of Blood Mountain, passing irridescent green ferns and bright orange wild azaleas. I gazed at the full moon on a clear night. I signed up for a weekly fresh vegetable delivery from a CSA. I slept with the windows open so I could listen to the sounds of night and awaken to the calls of birds. I visited downtown Athens and shopped in boutiques and a used bookstore, and toured the state's botanical gardens. I caught up with my 94-year-0ld aunt and spent long evenings talking with friends. I drank wine with my parents on their deck. I popped popcorn and watched movies cuddled up with my husband.

It's so easy to love life. Cancer makes it easy. Because you realize how precious all the simple, day-to-day aspects are...and you don't take them for granted. I wanted to spend each moment this spring enjoying being alive and healthy--I wanted to savor this time.

However, this time is coming to an end...so let the whining begin as I dread being sliced & diced again.

I'm aggravated about being out of commission for another 6 weeks for recovery--meaning, no swimming, beach trips, bike rides, hikes and other summer fun.

Not to mention (again) that one of my best friends invited me to join her on a business trip to PARIS (free hotel for a week!). But, alas, she will be flirting with French men without me, while I will be having another rendezvous (naked, of course) with my 2 male surgeons. They are seeing way too much of me these days.

And, then, there's the chance they will FIND something and I'll have to undergo chemo. (This is where the music from "Jaws" comes in.)

I would like to restate that I voluntarily underwent BRCA surgery in February --being cut up in 10 million little pieces -- in order to avoid any chance of chemo. Now, I find out that in addition to being cut up into 10 million little pieces, I might ALSO have to endure chemo again...for 5 months...complete with metallic taste in my mouth, hair loss and steroids bloating my body.

Somehow, I have to get my head around the fact that I may be looking like Shrek again.

Recently, I came across an editorial cartoon I had clipped from a local newspaper years ago. It's an illustration of a woman hovering over her husband and the caption says:

"You wouldn't be so tense if your job produced something meaningful, the spectre of death wasn't stalking you, constant crushing debt didn't have you in a stranglehold, and the memory of your distant youth wasn't making a mockery of your present existance."

Well, that about sums me up at the moment.

Thursday, May 1, 2008

A Draining Experience

Remember the 1960s movie "Born Free," in which the theme song goes:

BORN FREE, as free as the wind blows,
as free as the grass grows
born free to follow your heart.

Well, you can substitute the words "DRAIN FREE"...

Once you get your SIX drains removed, you won't know what to do with yourself!