my Breast Cancer blog

2004, age 34 — this is my story

Thank You, Remission

He was 3 years old when I was diagnosed with breast cancer. Now, he is 11. Today, he graduated from fifth grade. Thank you, remission, for the chance to witness this child’s milestone.

my Breast Cancer blog — A Redesign

I like to change things up now and then, and I love, love, love simplicity. That’s why I’ve launched a little redesign of this blog. It’s pretty plain, I know, but I kinda like that. I don’t like clutter and scatter. Minimal makes me happy, and if you could see my kitchen counters, you’d know what I mean (they are pretty bare).

I’m also a fan of how readers can easily scroll headlines in this new format without viewing a post in its entirely. Just read a small snippet of a story, then click on your desired title to roll out the whole story. Or course, you can also search topics under My Categories on the right-hand side of the screen.

Crisp and clean is my goal when I write, edit, and create, and I think this site delivers — do you?

A Little Piece of My Cancer Story

I was interviewed recently by a writer at Healthmonitor for the new Guide to Chemotherapy. It’s the kind of mini-magazine you’ll find in a doctor’s office, so be on the lookout because you just might spot the glossy guide while you’re waiting, waiting, waiting to see your medical people. The 36-page publication (which is free, and you can grab one for home) is filled with so much wisdom — chemo questions are answered, side effects are addressed, nutrition is covered, date nights are encouraged, and there are two pages devoted to a piece of my story. The article, called “Circle of support, chain of love,” is about my blogging (and my wig sharing), and if you wish to read just a bit of my almost-eight-year-long journey, this is your chance. Just click, navigate to pages 22 and 23, then read.

I’m Just Editing

I know I’m not around here much anymore. I apologize if you keep coming back hoping to find new content and inspiration. It’s just that I’ve been working, and, now, I spend much of my time over at Just Edits — my new-since-March one-stop edit shop, “where you hire me to clean up your copy, and I teach you tips and tricks sure to make you look super smart.” Please bookmark me at justedits.org, and stop in anytime — you won’t find much in the way of breast cancer material, but I will tell you exactly how to use periods with closing quotation marks and how to properly place apostrophes for last names that end in sCome “Like” me at Facebook, too.

Breast cancer — important stuff, yes, and I promise to come back when I’ve got meaningful stuff to say. Proper grammar — pretty important, too, I think, and that’s why I’m making a career out of correcting the written and spoken mistakes of the world. Well, some of them, anyway.

Kids of Cancer Parents Camp For Free

This is so very awesome — a free summer camp run by college students for kids with a parent who has (or has had) cancer. Don’t know a whole lot about the camp, but it’s called Camp Kesum, it’s offered in several states (Florida!), and, well, click on the link, see for yourself, then pass it on!

The Hair Hits the Road

It’s been on my head.

It’s been to Melbourne, Florida — twice.

It’s been to Akron, Ohio.

And off it goes now to Vienna, Virginia, where newly diagnosed Michelle will wear this wig once chemo takes full effect. Michelle, just now recovering from a mastectomy, is a married, working mom of two little boys, ages 1 and 4.

Michelle found me via this blog and reached out to ask some questions — several of which were about hair. She liked the look of my “underhair” — cotton on top, human hair around the sides, meant to be worn with hats — and she was thinking of getting such a cover-up for herself. No sense in that. I have a perfectly good one crumpled up in a box in my closet, I told her, and I pleaded that she let me send it to her. She accepted, so I shampooed, conditioned, dried, flat ironed, and topped with a bucket hat. Next, I’ll box it up and mail it off. She should have it in a few days, just in time to bring her some comfort before her own blond hair is gone.

Gosh, this hair tells such a story — I ordered it because I’d tried on a few traditional wigs, and the way they framed my face screamed, “She’s wearing a WIG!” Desperate to look like my own normal in the midst of cancer chaos, I loved the thought of a ballcap on top of hair that looked real. A hundred bucks (plus) later, I had in my hands a perfect solution — the not-scratchy, cottony-soft, blond-like-my-own-hair fix that was so believable a neighbor once commented on how great it was that I had not lost my hair. I attribute the facade to the human hair, the perfect shade of color, cut to just the right length, and looking fresh and clean and bouncy thanks to the recommended Frizz-Ease products.

This wig, which ironically looks nothing like my hair now (chemo can change the color and texture of hair), brought me peace when my world was crumbling.

I think it will do the same for Michelle.

And for whoever is in line next to her.

Run Amuck With the Duck for Lung Cancer

This post is not about breast cancer.

It’s about lung cancer — a disease with a survival rate of 15.5%.

In case you haven’t heard, that just is not acceptable.

Good news is that you can help change such a sobering statistic, and all you need to do is register for Run Amuck with the Duck and either walk or run a 5K.

It all happens in Gainesville, Fla. on March 31, 2012, and in the event you are not local (I realize many of you are not), then perhaps you can make a donation (even small contributions make a difference) to help fund a cure for a disease that is affecting Dianne Caridi, a young woman here in town. She and two other survivors are the girls sponsoring the event, and I know they would appreciate any support you can offer.

So, please think about (1) registering for Run Amuck with the Duck, (2) donating to Run Amuck with the Duck, and/or (3) spreading the word about Run Amuck with the Duck (feel free to tweak and republish this post).

Thank you!

UPDATE, 2/3/12: Dianne Caridi lost her battle with lung cancer.

Mastectomy Trend May Be Misguided

I asked my breast surgeon today for his thoughts on mastectomy for someone in my boat:

  • early-stage breast cancer.
  • no spread to lymph nodes or anywhere else.
  • lumpectomy + chemo + radiation + Herceptin.
  • seven years survival.

“Definitely not,” he told me.  “You’ve come too far, and you are doing so well.”

Plus, I am constantly monitored, and, at this point, my chance of developing a life-threatening breast cancer is slim.

There’s just no need for a such a drastic and major surgery, he said. The resident on service with him agreed.

I told my doc that it seems a trend that woman are removing their breasts after diagnosis rather than saving them when conservation is a real option.

“It is a trend,” he said, sharing that he spends lots of hours in lots of meeting discussing why women are moving in this direction.

If not medically necessary, mastectomy is just not something he supports. He even advises women who do need mastectomy for cancer in one breast to not remove the other one. Why? Because lopping off a healthy breast does not up the odds of survival.

Never did I actually want to cut off my breasts — I just wondered if it was a wise move for someone like me. The majority of readers who responded to my November poll Mastectomy — Do It? Or Too Drastic? chose “Do It.”

But my surgeon picks “Too Drasic,” and so I’m gonna roll with his wisdom.

For now.

Surviving Cancer Not So Simple

When the cancer doc says, “you’re cured, go home,” it’s not the end of the story.

In about a year, roughly eight years out from my year-long, every-three-week Herception treatment that targeted the over-expression of a certain protein in my tumor, doctors will start monitoring my heart. Why? Because the same drug that may be saving my life right this very minute, also has the power to compromise heart function after about 3,000 days.

(oh, and the chemotherapy drug Adriamycin that I received via dose-dense infusion on four separate occasions can also cause heart damage.) (dose dense means given every two weeks instead of three.)

(oh, and the radiation that zapped the breast right over my heart every day for 30+ days can also cause heart damage.)

I choose not to think too much about these potential side effects.

Still.

My point:

Surviving cancer is not so simple.

Fight Cancer With Fitness (GUEST POST)

By: David Haas

Whether you have just been diagnosed with cancer, are undergoing treatments, or are in remission, the benefits of keeping fit cannot be understated. Exercise keeps the body healthy and functioning at its highest capacity, and for bodies fighting a rigorous chronic disease like cancer, exercise can make a tremendous positive difference.

When my doctor first told me I had mesothelioma, I felt like there was nothing I could do, but he encouraged me to get off my sofa and start exercising, even for a short time daily, so I could make a positive change. Conventionally, healthcare professionals have encouraged cancer patients and survivors to ‘take it easy,’ but Ciaran Devane, chief executive officer (CEO) of Macmillan Cancer Support, stated in an article posted by CBS News that patients would be shocked to know the benefits of physical activity on their recovery and long-term health.

Decreased Risk of Recurrence

Studies indicate that for those who have beat cancer, exercise can help keep the disease from coming back. In a recent article posted by webMD, Kerry Courneya, professor from Canada and research chair at the Physical Activity and Cancer organization in Edmonton, Canada, stated that not only did exercise reduce the risk of recurrence, but it also ensured a longer survival after diagnosis.

Elevated Energy Levels

Exercise is known to reduce fatigue and increase overall energy levels. It also increases stamina. Cancer treatment can be rigorous, and exercise helps build the muscle and stamina needed to better withstand its effects on the body.

Improved Quality of Life

Exercise reduces the risk of other chronic illnesses, like cardiovascular disease and diabetes, while decreasing the risk of other health issues, like osteoporosis and depression. It also enhances mood by releasing serotonin, a ‘feel-good’ chemical in the brain, and produces an overall positive feeling of well-being.

Even a little effort at fitness can go a long way while living with or beyond cancer. It doesn’t need to be anything too strenuous. Small choices like taking the stairs instead of the elevator, gardening instead of watching television, or walking the dog instead of playing a computer game make a tremendous overall positive impact on living.

Thank you, David, for this reminder that exercise is powerful medicine!

Thankful

Thankful for Thanksgiving-like weather (yea, the 80s went away!).

A mom who *always* makes the turkey + everything else (my only job is eating!).

Kids who seem to still like me (Danny held my hand at dinner last night).

A husband whose compliments are oh-so-kind (he thinks I hold our family together; I think I’ve got him fooled!).

A sister who would do anything for me (wonder if she would run that half marathon in my place).

Nieces who let me braid their hair (not because they like it, but because I do!).

And so much more.

Like friends and family and love and support and food and home and health and …

You’re getting bored, I know.

Happy Thanksgiving.

Today, I Got a Call

Regarding the the unofficial good news I’d received about my MRI results on Tuesday, I wrote:

(But you know what? There’s a teeny tiny part of my brain thinking that someone might call and say, “nevermind, there is something wrong,” and, in the spirit of being totally honest, I must admit this.)

Well, someone did call today, a someone who gave me the official good news that my MRI was normal, that the wonky results that showed up the first time around were, in fact, due to hormonal fluctuations.

OK, I feel better now.

(Next up on the imaging front is a routine mammogram in June, then another routine MRI in November.)

Seven Years Ago

.Seven years ago yesterday.

On November 23, I had a biopsy. A large needle was placed in my breast and a piece of the lump was pulled out. The surgeon had a hard time getting a piece, however, because it moved around so much. He said this was a good sign, the movement. He sent the tissue to pathology and told me to call his office the next afternoon for the results.

.Seven years ago today.

The next day, November 24 and the day before Thanksgiving, my phone rang at 10:00 a.m., and the doctor who did the biopsy said the pathology report was back already. He said that unfortunately, cancer cells were found. He said I would need a lumpectomy (surgery to remove the lump), radiation, and possibly chemotherapy. He told me to buy a book called Dr. Susan Love’s Breast Book. I got the book that day.

Live and Learn, MRI Style

So, here is what you should know about MRI:

  • Your MRI will pick up everything. Great if you have certain types of breast cancer, because they will likely be detected, and this could save your life. Bummer if it’s not cancer, because you’ll be forced to chase it down like it is cancer in order to confirm that it’s not, and this could take a really long time, and even if it doesn’t take a really long time, it will seem like forever, and you will worry and fret and panic until you find answers.
  • Your MRI should be scheduled for a day that is between something like seven and 15 days after the onset of your period. This is very important. Should you schedule off this track, your MRI (remember, it will pick up everything) will zero in on all sorts of hormonal tissue changes, and this could lead a concerned radiologist to indicate in test results that “malignancy is considered.”

Get where I’m headed here?

In a nutshell, I caution you to (a) realize MRI is a very sensitive screening tool, and (b) make sure you are scheduled properly when you plan to use this very sensitive screening tool. If (a) and (b) converge, you might have a stressful time on your hands, like I just did.

Why for my past five MRIs no one has ever asked about my cycles when scheduling me, I will never know. And WOW, how lucky I’ve been for all those five times to not have happen to me what happened last Thursday. You see, my period started the day after my last-week MRI, and it looks like this just skewed everything. Yesterday’s MRI, though, implemented properly, apparently showed that the worrisome issues had resolved.

<sigh>

No.

<big sigh>

You just can’t imaging how relieved I am, given the fact that seven years ago TODAY, I had a biopsy for a lump I’d found in my left breast. The next day, the day before Thanksgiving, a doctor called me to say, “unfortunately, cancer cells were found.” That just can’t happen twice, with such precise timing.

It just can’t.

And it didn’t.

Now is when I get to declare that I am the happiest girl I know!

(But you know what? There’s a teeny tiny part of my brain thinking that someone might call and say, “nevermind, there is something wrong,” and, in the spirit of being totally honest, I must admit this.)

MRI Monday

The re-do MRI is over, and I fully expect I will get a call in the next day or so from a medical someone who will declare it normal. I really do believe this, even though there were machine technical difficulties this morning requiring a start and stop and start again, an interruption to fix one boob that might have been receiving too much pressure in the apparatus in which it hung, and marks on my body from said pressure that I never noticed after my past five experiences in the tube. Surely, none of that will matter, because my sense, really and truly, is that this whole scare that’s been going on is just a fluke, a false alarm, bad monthly “cycle” timing, something other than the “malignancy considered” wording that appeared on the first MRI.

I’m sure I’m right. I just need someone to confirm it for me.

Waiting.

 

Surgeon Says

Today, I met with a breast surgeon to review what’s happened over the past almost-week. To recap:

  • there was the annual MRI.
  • then the MRI report featuring the awful words “malignancy considered.”
  • then three days of pure worry (and lots of well wishes and prayers).
  • then an ultrasound that prompted docs to utter the happy word, “benign.”
  • then another couple of days of pondering it all.
  • then this afternoon’s consultation with the guy who operates on women with breast cancer.

First of all, who knew the gowns had gotten so lovely in the past seven years. Wow, check out my beautiful blue poncho-style paper cover-up, complete with hanging-open sides that are just perfect for peering in at boobs and muffin tops. It didn’t really matter, though, how substantial that pretty paper is because in a matter of minutes, I was on the exam table, boobs fully naked and prime for examination. And here’s what I learned about the troublesome twosome:

They feel fine. No lumps, bumps, masses, or tumors. No thickening or dimpling or other changes in the skin. Maybe a little nipple redness (we’ll monitor that). No swollen lymph nodes. No infection. No inflammation. No apparent cause for concern.

The game plan: The surgeon will review my MRI and ultrasound Monday morning at a weekly “breast conference,” where all sorts of doctors converge and weigh in on cases. While he’s at the meeting, I’ll be getting a re-do MRI, and he says if it looks better than the first, we’ll sum up that I am A-OK, and I will check back with him in January. If it looks the same as the first, we’ll call it a mystery and continue digging by way of MRI-guided biopsy. No matter what, I’ll watch the nipple (not, like, every two minutes, though, the surgeon said), and I’ll report any continued or worsening redness.

I learned so much from the surgeon today, like if I ever get cancer in my right breast, it won’t be a spread of the cancer I had in the left breast, because cancer doesn’t spread from one breast to the other. It would be another new cancer, and the chances of that happening are something like .5% per year.

I also learned that MRI catches more than 95 percent of invasive breast cancers (there are others, but these are the types that present as lumps). Awesome, right? Of course it is, but the bummer side to the story is that MRI picks up everything else, too. And what the heck does one do about that? Chase it all down, that’s what, just like I’m doing right now, to see if the iffy stuff turned up by that loud and annoying tube is cancer-related in any way, shape, or form. No fun, I admit, but it’s a necessary evil — unless of course, the boobs go away, which is totally an option, and thanks so much to everyone for sharing opinions on whether or not I should just chop the breasts right off (well, the surgeon would do it, not me). Still thinking on that one, but I’ll keep you posted.

Today was a good day. No pure worry, but still plenty of well wishes and prayers, and news that is more hopeful than not.

Oh, and to make the day even better, the skin biopsy I had last week came back normal. I didn’t see that coming at all, but what a treat!