All quiet on the southern front

Posted: May 14, 2014 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 7 Comments

There’s no one reason for my blogging hiatus. Once we got settled into the new house, I could have resumed blogging. I thought about it many times, and even bookmarked several articles as good potential blog fodder. Fodder or no, my heart has not been in it. I’m a believer in this statement by Gandhi:

google images

google images

If something is truly important, that’s what we do. That which is most important is what we make happen. So as much as I have thought about blogging, I haven’t made it happen. A recent conversation with a dear friend helped me realize that I miss blogging, and that it provides a necessary outlet for thoughts, fears, and ideas. And venting.

A few weeks ago, I realized that the anniversary of my cancer diagnosis was approaching. Yesterday was the fourth anniversary of my bilateral mastectomy.

mastectomy day -- hooray!

mastectomy day — hooray!

Four years a survivor. Somehow that doesn’t have quite the emotional “oomph” as Twelve Years a Slave, yet we mark the events in our lives — both positive and negative — in years, and we celebrate or commemorate anniversaries.

I’m not sure how I feel about another year of survivorship. It’s a prickly issue, and one in which the face of a very public disease gives way to a very personal struggle. The obvious-seeming emotion about surviving cancer would be relief, to be glad it’s gone. But here’s the prickly part: it’s never really gone. Instead, it’s the monkey on my back that manifests in every twinge or symptom that might possibly signal a recurrence; a random bone ache is surely a sign of mets. It’s the generalized anxiety about if or when recurrence will strike. It’s the niggling thoughts in the dark of night about the presence of micromets in the area formerly known as my breasts. It’s the questioning of every decision made along this “cancer journey.” Did I do enough? How much is enough?

Does it ever get easier, this uneasy survivorhood? Perhaps. Like grief, it becomes less raw, less all-consuming. But it doesn’t go away. As I’ve written about before, it’s never over. While some like to celebrate the anniversaries of survivorhood, I’m leaning more toward ignoring them, to not calling attention to them in hopes of not jinxing myself. It’s a personal choice, with no right or wrong status. I notice the dates as they approach, but instead of stopping to acknowledge them and the myriad emotions they evoke, I keep my eyes on the horizon.

 

13 facts about MBC

Posted: October 19, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 4 Comments

 Metastatic Breast Cancer Awareness day has come and gone , but it coincides with the anniversary of my mom’s death (from cancer, natch), so I didn’t get to really blab about it on the actual day. I want to do that now.

I’ve gotten to know some bloggers who have MBC, and I’ve learned a lot about it. I have an entirely new understanding of it, although I can’t really know what it’s like.

I think about MBC a lot because my brain likes to go to those dark, scary places sometimes when it’s not otherwise occupied with thoughts of what I can cobble together for dinner, whether there’s enough dog food to put off the Costco run, and transporting children to games, practices, and lessons.

When I was newly diagnosed and consulting with oncologists, one of the oncs I didn’t pick said something that has stayed with me. (I didn’t not pick him because he said this, by the way.) He said once a cancer comes back, it’s no longer curable. No matter what stage you start and how fortuitous your prognosis, once it comes back, you move from curable to treatable.

Whoa.

That is frightening.

It’s also true.

I think about recurrence all the time. As in, at least once every day. Not in a wringing my hands kind of way, but in a “this is my reality” kind of way. I’ve done my homework and I’m very realistic. I would be surprised to skate outta this life without cancer yet again crashing my party.

Even though I feel like I did everything right, there is no guarantee that I won’t face recurrence. Bilateral mastectomy at age 41 seems drastic, but I like slash & burn warfare. Even though I have no breast tissue, I am not guaranteed that breast cancer won’t come back. My rate of recurrence is low, statistically, but as I’ve learned the hard way, stats don’t guarantee anything either.

I’m not saying this to be negative. No sir. In fact, there’s a tremendous amount of pressure on cancer patients, especially those with breast cancer, to be positive, to be optimistic, to be chipper about the fight. The irascible Molly Ivins spoke on this topic better than anyone:

“I suspect that cancer doesn’t give a rat’s ass whether you have a positive mental attitude. It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing. The only reason to have a positive mental attitude is that it makes life better. It doesn’t cure cancer.”

Amen to that.

Molly also said this about BC: “Having breast cancer is massive amounts of no fun. First they mutilate you; then they poison you; then they burn you. I have been on blind dates better than that.”

But my favorite thing she said about BC is this:

“Losing a part of a breast or all of one or both has, obviously, serious psychological consequences. Your self-image, your sense of yourself as a woman, your sense of your sexual attractiveness are going to be rocked whether or not you have enough sense to realize that tits aren’t that important. I am one of those people who are out of touch with their emotions. I tend to treat my emotions like unpleasant relatives–a long-distance call once or twice or year is more than enough. If I got in touch with them, they might come to stay. My friend Mercedes Pena made me get in touch with my emotions just before I had a breast cut off. Just as I suspected, they were awful. ‘How do you Latinas do this–all the time in touch with your emotions?”‘I asked her. ‘That’s why we take siestas,’ she replied.”

Molly Ivins died of metastatic breast cancer on January 31, 2007 at age 62. I miss her sass, her liberal bias, and her writing about politicians who are “too big for their britches.” Anyone who uses that expression regularly will always have a seat at my table. The following 13 facts are  in her honor. It’s not much, Molly, but I hope it’s something.

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13 Facts Everyone Should Know about Metastatic Breast Cancer

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org. We appreciate your support on October 13 and throughout the year.

Victory after tragedy

Posted: July 19, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , | 6 Comments

I wanted to post something about British Open champion Darren Clarke on Sunday, when he won the tournament, but have been consumed with tournaments and champions in a different sport, so here I am.

I’m not much for watching golf on TV. It’s slow and to me, boring. I consider it an activity, not a sport, and I say that knowing full well I’m torquing a lot of golf fans by doing so. I don’t quibble with the skill involved, but to me if you don’t get sweaty & out of breath doing it, it’s not a sport.

Anyhoo, back to Clarke.

I didn’t pay him or any of the golfers one lick of attention over the weekend. If Freddy Couples isn’t playing, I can’t be bothered. 

Then Trevor told me that Clarke’s wife, Heather, had died from breast cancer. That got my attention. Heather Clarke died in 2006 at age 39 after a recurrence. Her boys were 8 and 5 years old when she died. 

That is my biggest nightmare. And I imagine it’s the biggest nightmare of every mother of young kids who is diagnosed with this damned disease. Recurrence is enough of a nightmare, but dying from BC with young kids at home is even more terrifying. Being diagnosed with cancer at a young age, with young kids still to raise, is hard enough. Worrying about and fearing recurrence adds to the terror that comprises this disease. I don’t care that my odds of avoiding recurrence are good, or that I’m doing all the right things to ensure that this cancer does not return. I was doing all the right things before cancer became the pile of poo in my path, and it still infiltrated my life. So while the numbers and statistics are in my favor, the fear is always in my heart.

During her battles with BC, Darren said of his wife, “My wife is a battler. She fights it so hard and I have so much admiration for her.” He too is a battler, having played in the Davis Cup 6 weeks after Heather died, and winning all 3 of his matches.

At Heather’s funeral on August 17, 2006, the minister remembered Heather as “an unpretentious, lovely girl, who was full of character” and said “that day in March 1996 when you married her here in this church, Darren, you really won the greatest trophy of your life.” The reverend made everyone smile by recalling how she loved to shop while her husband played golf. My kind of girl.

After accepting the British Open trophy on Sunday, Darren Clarke said, “It’s been a long and bumpy road, I have had some good things happen to me and some bad things, but I’ve had so much support from an awful lot of people.” He credited Heather with watching him “from up above” and said, “In terms of what’s going through my heart there’s obviously somebody who is watching down from up above. I know she’d be very proud of me. She’d probably be saying ‘I told you so’. But I think she’d be more proud of my two boys. It’s been a long journey.”

He seems like a really cool guy.  He likes to lift a pint or two, and he’s been known to enjoy a cigar after a round of golf. After winning on Sunday, he partied all night, and he started that party during the post-match press conference by drinking a pint of Guinness while being interviewed. I really like this guy. Being a good father is important to him (take a lesson, Tiger). In an interview with Golf Magazine, he was asked how long it took to return to normal after Heather died. His reply is so honest. Instead of platitudes and false courage, he says:

“Well, what’s normal? It’s still not normal. It can’t be normal when you haven’t got the mother of your kids and my wife at home. I was starting to get back to an even keel probably at the start of this year [2009]. It was a long time. There were some dark moments. God knows things have been difficult for me, but it has been even harder for the boys. It has been tough having to deal with things. And tough being thrown in to being 100 percent responsible for my two kids. I had to start making the decisions for everything for the boys. Making the day-to-day decisions for the boys has been a shock to the system. You don’t realize how much wives have got to do until you’ve got to do it yourself.”

When asked in the same interview if he felt angry about her death, he again answered honestly: “Probably. I’m sure anybody would. You know, Why Heather? Why? Why? Why? There are no answers to that.”

No, there are no answers to that.