my Breast Cancer blog

2004, age 34 — this is my story

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Women Who Fight Cancer Are Rock Stars

Me, hospitalized in March 2005 with chemo-induced low blood counts.

In the spirit of International Women’s Day, I honor those who courageously rise and bravely fight cancer — women who are diagnosed with a deadly disease and are put through the rigors of grueling, poisonous, and far-reaching treatment plans that sometimes do not work. Some days, I am bummed I am one of these women, but for most of my moments, I am proud to be part of a group of badass warriors, whose strength inspires me stay strong, focused, and hell-bent on surviving this stupid disease.

Just Hope Geocache Has Been Found

My Just Hope geocache is now officially listed on the Geocaching.com website, and, already, it’s been found. This morning, I received notification that a geocacher located my treasure. This person signed the online logbook, “FTF. Thanks for keeping us all aware of this tragic disease.” (FTF means first to find.)

If you are the person who located Just Hope, congrats on the find. And welcome to My Breast Cancer Blog!

Just Hope Hidden in the Woods

Just Hope is hidden here.

I know it appears that I live in the freezing wilderness of some northern state. I do not. I live in Florida. I just happen to get cold very easily, so my coat, scarf, and gloves come out when the temperature drops to what I deem chilly. Today, the 50s were chilly, so I bundled up on our trek into the woods, so my boys and their cousins could hide my just-assembled geocache.

Joey and cousin Tori hide the Just Hope geocache.

My family is new to geocaching — a free real-world outdoor treasure hunt that allows players to locate hidden containers, called geocaches, using a smartphone or GPS. We’ve been out maybe four times, and already, we love it. That’s why I decided to fashion my own box of goodies, which, of course, is breast-cancer themed. The contents of my Just Hope geocache include cancerspot.org stickers, a logbook and pencils, some trinkets for sharing, and a note that reads as follows:

Congratulations—we “hoped” you’d find this cache, and you did! Way to go.

OK, here’s the deal on this one: The mom in our family was diagnosed with breast cancer at the age of 34 back in 2004. She is still surviving (yay!), and she has been blogging about it ever since the start of her horrible yet wonderful journey (yes, there have been some good moments along they way). We hope you’ll take a sticker and visit her blog—leave a comment if you do to let her know you stopped by—and our wish is that you will find there some speck of hope or inspiration.

Until we hear from you, be well—and happy continued geocaching!

Oh, please sign our logbook, too, and if you leave a trinket, feel free to take one!

Just Hope has been submitted to Geocaching.com, and when it is approved as a worthy geocache, it will be featured on an online map so that treasure hunters can track it down. If you happen to be one of those hunters, we “just hope” you find it.

Cancer-Survivor Spectrum — Where Do You Fall?

I know a guy. He was recently diagnosed with testicular cancer. He had surgery, and radiation, and he is now cancer-free. He is not sure he identifies with being a cancer survivor, though, and I think he should.

“It’s weird when I think about or talk about my cancer story, because I don’t really feel like there is much of one,” he shared with me. “I almost feel a bit guilty talking about it. So many people have or had it so much worse than I did. Not that any cancer story should be eventful, but mine was very uneventful in my mind. Something felt unusual, I had a couple of tests done, a week later, I had it removed, and I went through some light radiation to better my odds of it not coming back. That’s pretty much how it went. I feel like calling myself a survivor is going overboard, compared to what others have gone through.”

I totally get what he’s saying, and I think we all judge where we fall on the survivor spectrum. My journey was a challenge for me personally, but others have it worse, and some people must live on treatment in order to just buy time. I often feel guilty that I have survived for 8 years, and some people never get that gift. The bottom line, though, is that we all long to be cured, and I believe my friend should be so completely thrilled that his cancer was caught and terminated. Also, the feelings that come with having cancer are pretty universal, I think; there is fear and worry and hope and a whole bunch of roller-coaster emotions that happen regardless of the type of cancer or the prognosis. My point: My friend is a survivor, for sure. He is just luckier than some, that’s all.

Where do you fall on the cancer-survivor spectrum—and how do you feel about your position compared to the position of others?

I Love What Happened Today

I think I want a new job — I want to be a professional guest speaker. I had so much fun today sharing my breast cancer story with a bunch of University of Florida medical students (if you guys are reading this, I thank you sincerely for being such an attentive and responsive audience!) that I want to do it again and again. Think there’s good money in such an endeavor? Probably not. Still, I’m willing to suck it up and talk anyway.

Here’s what was so great about today: Before I stepped behind the podium in the large classroom with the tiered desks and seats, I got to listen to Dr. Merry-Jennifer Markham lecture about cancer survivorship, and she was gooood, and her points segued perfectly into what I had to say. She didn’t know it would happen that way, and I didn’t know it would happen that way, but our two presentations meshed beautifully. For example, she talked about how it’s not uncommon for cancer survivors to get skin cancer, and when it was my turn to talk, I pointed to the ugly scar on my arm where my basal cell cancer was removed. She discussed the value of psychotherapy and antidepressants during cancer treatment, and I revealed that both were part of my line-up. She discussed chemo brain. I think I had that. I can’t remember. It’s like we had discussed our plan for talking to these students, but we never did—it just happened that our messages were similar, and it was lovely.

I also love that I learned some new bits of information from Dr. Markham (holy cow, women have a 1 in 3 chance of getting cancer [any cancer] in their lifetimes, and men have a 1 in 2 chance), I love the little microphone I got to clip to my shirt, I love the questions a few students asked me after the class ended, I love that the traffic on this blog has totally ramped up in the last few hours (there are lots and lots of Gainesville visitors, and I suspect many of them are the students to whom I spoke), and the free valet parking wasn’t bad, either.

I love what happened today.

Operation Booby Cache — Calling All Comments

We are newbies at geocaching, but we’re inspired to do more than find hidden outdoor treasures; we want to fashion our own cache, and we’ve already chosen our theme — breast cancer awareness. Of course.

Our box will look something like this (no pink!), and we are trying to determine what exactly we will place inside, besides the basics, like logbook and pen. We’d love your ideas — think awareness and inspiration, and tell us what compelling contents should fill the waterproof space (well, not fill exactly, but we’d like a few trinkets to send a message). We can even include takeaway items so that those who locate our stash can pocket a goodie or two.

OK — ready, set, share!

Ready to Share My Story, My Hair

My favorite wig will join me on February 13 when I talk to a group of second-year medical students at the University of Florida. My task is to share my breast cancer story with these students, who are learning the basics in an oncology course, and then to answer their questions. I am also taking along a Ziploc bag filled with the three ponytails I chopped off before shaving my head pre-chemo, some magazines that contain my published cancer articles, and some notes to narrow down my 8-year-old journey into easy-to-understand tidbits that fit into something like 20 minutes. I’m ready. So is my hair.

$8 to Help Crush Cancer

It’s been years since I’ve done any cancer-cause fundraising — I collected so many thousands of dollars over the course of a few Making Strides Against Breast Cancer seasons that I thought it was only fair to give my family and friends a break from forking over funds on my behalf. But now, I am back, and I’m requesting that you donate a one-time, small contribution of $8 to the American Cancer Society’s Relay for Life.

Why $8? Because I have survived cancer for 8 years, and that’s $1 per year of survival, and it’s a fairly small amount to contribute, and if a bunch of people donate, this could really add up.

Why Relay for Life? Because Joey’s middle school has a team, and I want to support the OVMS Panthers as they do their part to help crush cancer. Plus, Sharon Sailor, a very sweet friend of mine who has known Joey since he was a  little Pre-K guy, is heading up the team, and that really makes me want to back this worthy endeavor.

So, if you are in the position to share 8 of your dollars (they are tax deductible, by the way), just head on over Sharon’s page, click on Donate, and complete all required fields. Then, accept my sincere thank you for your kindness, and don’t forget that every one of your pennies counts toward saving lives that may otherwise be lost to cancer.

Here’s the Thing

The thing about all these breast cancer women I know is that many of us have never met in person. We have connected mostly through mutual friends, blogs, and Facebook, and together, we share our stories, raise awareness, spread hope, swap wigs, and find mentors for each other. We share a common bond that makes personal contact unnecessary, and when someone in our community passes away, the sadness runs deep, and the reminder that none of us is immune to death really stings. Tomorrow, I am confident, will be a better day.

The Last Word

I had the last word today during a visit with 20-some University of Florida medical school applicants. They were gathered on campus to complete a day-long interview process, structured to give them a glimpse of a day in the life of a med student, and on the agenda was me — a real, live patient.

I told my 8-year-long story from beginning to end in about 20 minutes (whew!) in a freezing-cold room in the basement of Shands Hospital (I was actually shivering at times), and my favorite oncologist, who serves as the assistant dean for the College of Medicine Admissions, said it went very well. I think it did, too.

It was my job to deliver the last word to the folks sitting with me in a circle formation, the individuals who will likely one day be charged with the responsibility of delivering health care to sick people. “Practice medicine with sensitivity,” I told them. “Even if you must fake it,” I said, “show some compassion because it can make a huge difference.”

Then, I read from a hand-written note that was mailed to me by the surgeon who performed the needle biopsy on my suspicious left-breast mass. He’s the one who called me at home the day before Thanksgiving 2004 to inform me that “unfortunately, cancer cells were found.” His note read:

Dear Jacki,

Just a brief note to let you know that I regret being the messenger of bad news, but know that you will come through this difficult time healthy & strong. I & my staff wish for you a smooth & speedy recovery.

Dr. Mac

That note mattered. It made me feel less like a statistic and more like a cared-for individual. That note still matters; that’s why I keep it at close reach, so I can forever remember that there are doctors who really do care.

Sensitivity.

That was my last word.

Healing My Body One Bite at a Time

My tummy is troubled. Not always. But when it’s all out of whack, I feel bloated, tight, pained, and uncomfortable. I’ve had so many tests, I can’t even name them all, and nothing (nothing!) has revealed itself as the problem. I have narrowed down my suspicions, though, and I keep coming back to the worry that something I’m eating is screwing up my insides. That’s why I’ve decided to take matters into my own hands and heal my body one bite at a time.

For almost one week, I have eaten a Paleolithic (Paleo) diet  — basically, I am mimicking the eating habits of our long-ago ancestors who ate only what they could hunt and gather. My diet, therefore, consists of animal protein (but no red meat for me), vegetables, fruits, and naturally-occurring, high-quality fats (like some, but not all, nuts). The purpose of eating primal is to decrease inflammation inside the body and to achieve a higher level of physical and mental health. Buying grass-fed meats and organic foods is the best way to accomplish this way of life, and while I am not totally there just yet, I’m doing my very best to follow the rules. The proof is in my gas bill — I have trekked to grocery stores and markets every day this week chasing down products that fit the bill — and in the new items that now line the shelves of my fridge and pantry. Paleo Bread is today’s score.

The bread I am accustomed to eating is not on the Paleo list. But this way-expensive, gluten-free, grain-free, yeast-free, dairy-free, soy-free, starch-free option, made by Julian Bakery and available at my local D’lites Emporium, is approved. It’s made with coconut (there’s an almond option, too) and is low in calories, low in carbs, high in protein, and high in fiber. It’s also not quite as tasty as real bread — the kind I once slathered with honey butter at the Outback and dipped in oils at Macaroni Grill. I did yummy up my new purchase with a bit of almond butter and sliced red grapes, and I think I’ll be fine with this mini treat, even though the bread slices are really small and really thin, and they don’t toast very well.

I am not sure whether I’ll be a loyal fan of this bread. (To its credit, it is very filling.) Honestly, I’m not certain where this Paleo journey will lead me. All I know is that I am taking this quest one day — and one bite — at a time.

Raw October — Day 31 (October Wrap-Up)

Raw October: raising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

Every October, I receive emails from marketing people trying to push their pink products. “Please help us promote our pink this and our pink that, and we’ll give you a pink this and a pink that as a token of thanks,” say the folks who promise to give a percentage of proceeds to the breast cancer cause. Maybe they do donate money to research; maybe they don’t. I have no way of telling, really, but I do know that the percentage is usually not enough to make a huge difference, and it’s always capped at some strategic amount. Plus, I’m almost certain the companies stand to make a pretty profit for their pink projects. Sometimes, they even peddle pink items that are not all that healthy for women trying to prevent or beat breast cancer (think alcohol and fried chicken).

This year, I declined all pink offers, and I devoted each October day to something breast-cancer real and breast-cancer raw. I shared sobering statisticsfantastic cancer findings, transcripts of interviews with my growing boys who don’t even remember my disease (here and here), photos of lost hair, and graphic images of scars and surgery.

My intention over the past month was to offer you an honest peek into the world of breast cancer. I want you to see that breast cancer can be crazy scary, but it can also be enlightening and happy. My ultimate goal was to pass on just one nugget of information that may help you or someone you know or love who will one day fight breast cancer. I could have given you a link to a discount on a cute pink bathrobe and fuzzy slippers, but I think what I gave you — a little bit of knowledge and a whole lot of hope — is even better. I hope you agree.

Raw October — Day 30 (‘Parenthood’ Poll)

Raw October: raising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

If you’ve been tuning into “Parenthood” lately, you know that a breast cancer storyline is weaving its way through the Braverman family dynamics. The TV journey stems from personal experience — show creator Jason Katims’ wife is a breast cancer survivor — and so, it would seem, the topic should be portrayed pretty realistically. What do you think — is the “Parenthood” storyline rockin’, floppin’, or is it a so-so representation of a real-life experience. Cast your vote in the poll below, then share your thoughts in the comments.

Raw October — Day 29 (This Never Gets Old) (VIDEO)

Raw Octoberraising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

the power of songThis never gets old, and it never ceases to make me cry. This man sang to me during one of my chemo treatments — he sang to every patient in the infusion room on this January 2005 day.

You know how I mentioned in yesterday’s post how my mom and Jordan sat with me during each session? This is one of those times.

Click on the image to start the video. See if it makes you cry.

Raw October — Day 28 (My Survivor Reminder)

Raw October: raising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

My niece Jordan is my survivor reminder — she was born in October 2004; I was diagnosed with breast cancer in November 2004. Every time she turns another year older, I tack on another year of survival. She just turned 8 — that means I am about to celebrate 8.

Jordan’s age is not the only cancer connection she and I share. We also have memories (well, I do; she doesn’t) of infusion-room bonding. Jordan was 6 weeks old when I started chemo, and she sat with my mom and me every time toxic drugs dripped through my veins. My recollections of sickness and despair are tempered by the vision of that sweet, new baby in my mom’s arms — the baby who now has beautiful long hair; perfect freckles; a mean volleyball serve; and a huge hug to share whenever she sees me.

Thanks for being my survivor reminder, Jordan. I love you!

Raw October — Day 26 (What Cancer Means)

Raw Octoberraising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

Cancer, by Joey

Joey is loving his sixth-grade technology class — so much so that he’s been coming home, hopping on the computer, and practicing his new skills. I recently asked him to put his know-how to work on an image representing what cancer means to him. I love what he created with SMART Notebook.

I also asked fourth-grader Danny to render me an image. He complied, crafting me this beauty using iPad Sketch:

Cancer, by Danny

Raw October — Day 25 (Cancer Talk Coming Up)

Raw Octoberraising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

On January 4, 2013, I will talk about cancer — not that I don’t spout out about it all the time as it is, but I will officially discuss the disease that is now 8 years behind me when I join my favorite oncologist at Shands Hospital for an interview session with prospective med students. My doc will highlight how the school/hospital operates from a patient-centered perspective, I will share my patient story, and the students will get to ask me questions. In all, I will give about 2 hours of my time. I know I will enjoy every minute of it.