Godspeed, Jody

flowers

Jody Schoger died this morning. Cancer stole her from us. The breast cancer community lost a tireless advocate, voice of reason and fearless friend, but beyond that, she was a wife to Steve, sister to Megan and pet mom to her beloved and beautiful Katie.

This tribute from Alicia Staley, her friend and cofounder of BCSM (Breast Cancer Social Media) tweet chat and community, says it better than I ever could.

Jody, rest in peace. You used to say cancer needs more cowbell. There better be a whole lot of cowbell in heaven, and pie too.

What Survives of Us

Pam and me at my book launch party, September 2010

(Editor’s note: Watching “Being Mortal” on PBS last night inspired me to repost this June 2012 post about my friend Pam. She controlled the end of her story.)

“What will survive of us is love.” -Philip Larkin

Pam broke the news on December 9th, over dinner at our house for an early Christmas celebration. She had stopped all her cancer treatment because her oncologist, who cried breaking the news, told Pam there was nothing more they could do for her. She was calm when she told us how she could feel her body shutting down. My brother-in-law Jeff, his partner Eddie and I cried. Bruce, my husband, did not, but he got a huge lump in his throat.

And then Pam did something I will never forget. She talked about how grateful she was for the life she had and for everything she had been able to do in 40 years. She talked about what a wonderful vacation we had together in Napa in October and about how much fun we were going to have that weekend.

And we did have fun. We went to the Old Market the next day and watched the Dickens carolers. We had lunch in our favorite French bistro. We sipped chocolate martinis in our favorite bar. We toasted being there, in that moment. Our standard toast two years earlier was “Here’s to getting to.” We had started counting toasts in Napa with ridiculous numbers; toast 4,205 or 5,622. We kept that going now.

In the breast cancer Twitter community we talk about being fearless friends. I am so far from fearless. I was scared for Pam all the time, and so was Bruce. We were afraid of what might go wrong when we were traveling together or she was visiting. Jeff was driving her somewhere one day toward the end and she suddenly went “Oh! Oh!” and scared the daylights out of him, but she had seen some fast food drive through she wanted to stop at for iced tea or a shake or something. What allowed us to be there for her was her incredible strength and steadfast refusal to let that thief cancer rob her of her joy in life. If she was tough enough to handle it, so were we.

She never stopped being interested in life. She wanted to know everything about our lives. She wanted to hear about school and work and food and wine. Bruce and I spent the weekend with her in her Kansas City home in early March, a month before she died. She said if you want to come, you should probably come sooner than later.

She took us shopping and to lunches, to a speakeasy and dinner with her parents. We got pedicures and she brought champagne in her tote bag. She cooked. She drove–like a bat out of hell. She hugged me so hard when we left it was like being hugged by my cowgirl cousin, who throws hay bales. I could feel her spine. When we called to let her know we got back to Omaha, she was at her son’s baseball scrimmage, in spite of pain that had kept her on the couch. None of us will ever know what all that effort cost her. When the hospice nurse started coming to her house, she told Pam she wasn’t taking enough pain medication, but Pam had to do this her way. She put off the shrinking of her world as long as she could.

After she went to hospice, she was talking to my sister-in-law Anita about something Anita had made for dinner and said, “I want that recipe.” She knew she was never leaving the hospice; she was tough enough to make the choice to go there. You need to know this isn’t denial. This is insistence on being alive.

One of my favorite stories about Pam was from the night of my book launch two years ago. She bought a carrot cake at the restaurant where we had dinner because I mentioned I liked it. (She was like that. If you liked something, she remembered it and you ended up getting it as a gift.) We brought it home after the party and she set it on the kitchen counter. Jeff and Bruce and Eddie and I were all dithering–too late, too many calories, blah blah blah. Pam didn’t say a word. She pulled five forks out of the silverware drawer, came back to the cake and stabbed all the forks into it. We mauled that cake.

That was how Pam lived her life, and how she faced death. Straight on, no dithering, no excuses. If I can be half the woman she was when my time comes, it will be because she taught me how to live with joy and light and love, and how to face death with grace.

Here’s to you, Pam. Toast 10,373 and counting. I’ll raise my glass to you for as long as I live.

Tangled Up In Pink

(Editor’s note: This is a repost of something I originally wrote two years ago. Some things have changed since then; Lionhearted advocate Rachel Cheetham Moro, who was still using the pseudonym Rachel May in the blog linked here, died of breast cancer. Jody Schoger, a wonderful writer and thinker, and founder of the #BCSM tweetchat, learned her breast cancer has metastasized. But some things have not changed; October is no less pink, and we still have not found a cure.)  

I’ve always loved fall, particularly October, even though in recent years it’s become tinged with sadness. My mom died on October 1, 2003, and my dad’s birthday was October 13; this year, he would have been 80. But those bittersweet feelings seem in perfect keeping with fall. The glory of the brilliant gold and red leaves lies in knowing they can’t last. 

But now, thanks to the pink retail holiday that breast cancer has become, at least in the United States, the black cat and orange pumpkin of Halloween, the crisp blue sky and gold leaves of a perfect fall day, have all been crowded out by pink.

The crowding isn’t just visual. When you blog about breast cancer, October is a land mine just waiting to be stepped on. Do you jump on the pink bandwagon and blog about breast cancer awareness and support, as if it’s the one time of year you can talk about it? Or you resist, lamenting the avalanche of pink products and specials and events that have hijacked the month?

I knew this had become an issue when another blogger asked me if I had any big plans for October blog posts. The fact we were even having a discussion about this made me realize just how much Pinktober has gotten under our collective skin. LIke the pink ribbon itself, it’s a loaded symbol.

The truth is, I don’t have that much to say about Pinktober other than I’m already tired of it and don’t like feeling (self-induced) pressure to write about it. Instead, I’m going to give you a recommended reading list of the best things I’ve read so far.

I mentioned that the pink onslaught seems to be most intense in the United States. Read this wonderful post, “Where There Is No Pink Pandemic,” by Philippa Ramsden at Feisty Blue Gecko, to see how differently breast cancer is viewed in the rest of the world.

One of the best posts I’ve read about what a loaded symbol the pink ribbon has become comes from Jody Schoger at the wonderful Women with Cancer. In her most recent post, Upending Pink, she explains why October has made her uneasy for a long time, and includes some great links to recent news coverage of all things pink. But what touched me even more was her previous post, Left Behind, in which she talked about how the politics of the pink ribbon intruded on something as private as a funeral. (I’ve had similar mixed feelings when accosted by a basket of pink ribbons at a funeral, as I’m sure many of us have.)

One of the best and most consistent critics of pink ribbon culture is Gayle Sulik, who wrote the book Pink Ribbon Blues. She will be blogging 30 Days of Breast Cancer Awareness and her first installment, the Inspirational vs. the Actual, looks great.

Rachel May at the Cancer Culture Chronicles sums up what’s wrong with the typical approach to awareness in Breast Cancer Awareness Jersey Shore Style! All outcomes are good, buying a pink pashmina passes for awareness, and there is nothing remotely related to her experience with metastatic cancer. Apparently, her particular “brand” of cancer is a tough sell. It’s a bit problematic figuring out which shade of lipstick works best with thrush.  

Debbie Woodbury at Where We Go Now used to like pink, and wants us to reclaim its power this October.

You’ll find plenty of thought-provoking reads in these and many other excellent blogs. And here’s wishing all of us a fast month.

Breast Cancer: It’s Not Just About You

Dusting off this post in honor of Monday night’s #BCSM tweetchat with Marc Silver (@bc_husband) about what breast cancer does to families. And I just realized my blog turned three years old on Thursday. -Jackie

Deciding what to do when you’re diagnosed with breast cancer is one of the loneliest decisions you’ll ever make. Your doctors will give you  their best counsel, but it’s ultimately up to you.

Although you’re the star of this horror show, if you have a family, breast cancer affects all of you. Both my husband Bruce and I felt hounded by pink ribbons in the early days of my diagnosis. We decided to escape by watching the John Adams miniseries on HBO and wouldn’t you know it, his daughter had breast cancer. It was fine until they got to the 18th century mastectomy minus anesthetic. Bruce yelled at me to leave the room. When I came back, I said, How was it?” and he said, “I don’t know, my eyes were closed.”  

Bruce was more scared for me than I was for myself, although he didn’t share his fears with me until I became calmer and stronger. At one point he asked me if I would consider the double mastectomy as prevention, and asked me to think about it. I waited for about 30 seconds and said, “I’ve thought about it. No.” He told me he didn’t want me to die and I told him I wasn’t going to die and preferred dealing with one breast at a time. But first and foremost, he told me he would stand by my decision, and he’s been true to his word. I couldn’t have asked for a better partner to accompany me on the cancer roller coaster. 

Bruce was amazing in too many ways to recount here, but I’d like to share what a great source of humor he was throughout this adventure. (Yes, cancer does lend itself to humorous moments and I would urge you to take advantage of them when you can. Sometimes that’s the only power you have over a situation that sucks.)

When we were waiting for our first consultation with the doctor who would become my oncologist, I said, “Well, at least nothing can surprise me now.” (We had been assuming for two months that I would undergo radiation and had just had a different oncologist recommend a mastectomy.) Bruce leaned over, lowered his voice and said, “I’m sorry–we’re going to have to cut off your head.”

One of my favorite stories about family decision making was in the October 2009 Omaha World-Herald Healthwise supplement. (I can’t link to it for you because it’s not archived online.) The woman’s family voted on a white board posted in the kitchen with headings “Save the Boob” and “Lose the Boob.” (In case you’re curious, they voted to lose the boob.) That’s a family I wouldn’t mind being a part of.

Your turn–how did your family members handle it? How did they prop you up or make you laugh?

Medical Treatment vs. Magical Thinking: Which Would You Choose?

Editor’s note: In honor of this week’s #BCSM tweetchat on alternative therapies and quackery, I’m “rerunning” this post I wrote a couple of years ago. -Jackie

I just don’t understand how someone can live in this day and age and deny the effectiveness of scientifically sound medical treatment when dealing with breast cancer. I was completely flummoxed when I came across the in-depth and thoughtful post “A horrifying breast cancer ‘testimonial’ for ‘holistic’ treatment” on the Respectful Insolence science blog, written by a surgeon and scientist who uses the pen name Orac. (Editor’s note: Read his latest post on cancer quackery.)

Like others who came before and surely will come after her, Kim Tinkham rejected conventional medical treatment  in favor of quack pseudoscience, in this case provided by Robert O. Young, who believes cancer is caused by “excess acid” and flacks something called the PH Miracle. Which also aids with weight loss, diabetes and anti-aging according to their website. And why not? Heck, if it can cure stage 3 breast cancer, weight loss must be a piece of cake.

As I read this excellent if alarming blog, I couldn’t stop wondering what could cause someone to reject real medical treatment for 21st century snake oil. And as Orac explained, Tinkham was also a proponent of “The Secret,” which was a big fad a few years ago. The Secret is like a self-fulfilling prophecy on steroids–whatever you believe, you can make happen, never mind cause and effect. The psychology world calls this naive and unfounded belief “magical thinking.”

I’m not trying to pick on Tinkham, just understand her. One of the things she kept talking about was personal choice. I’m pretty big on choice myself. I know from experience how difficult the choices can be when it comes to breast cancer, and I also know that no one else can make that choice for us. And I understand and support people who choose to not to undergo treatment so they can maintain quality of life as they approach its end.

But to reject the treatment that’s our best hope of forestalling that stark end-of-life choice is absolutely unfathomable to me. While I was wrestling with the decision of what treatment plan I should accept for my early-stage breast cancer, not once did it occur to me to reject those options for the equivalent of not stepping on a crack.

What has to be in your head and heart, to make you believe that belief itself (and whatever magic elixir happens to be in vogue) is a better option than professional medical treatment? How can we break through that kind of belief system? I’m not sure we can. I kept wondering what I would do if someone I loved told me she was going that route. I wouldn’t be above trying emotional blackmail and begging her to do it for her family if not herself.

The saddest thing about this is all those other desperate women who are going to see Tinkham’s testimonial on YouTube and believe in quack cures like she did. If only we could get them to believe in science and medicine.

As for Robert O. Young, there’s a special place in Hades for him and people like him.

Picking Blackberries

(This is a “summer rerun” of a post I wrote last August. The blackberries were earlier than ever this year so I’m posting it now. This repost is  a bit tinged with sadness because our friend Rachel of Cancer Culture Chronicles, who also enjoyed her garden, commented on my original post and wanted to hear more about gardening in Nebraska. Rachel died in February. Rach, this one’s for you. -Love, Jacks)

It’s August, and that means it’s time to pick blackberries. This is the time of year when we get several quarts every couple of days from the unruly tangle of blackberry bushes in our back yard. It’s been so hot that the large metal bowl I like to use gets almost too hot to touch, so I swapped it out for a plastic bowl. Luckily, the heat has backed off a bit.

Our blackberry bushes are thornless, which wasn’t supposed to happen. We’d always heard that thornless blackberries don’t survive Nebraska winters, but we accepted a half-dozen cuttings from Bruce’s sister’s Kansas City plants figuring we had nothing to lose. Now they’re threatening to take over that part of the yard and we get a bountiful crop of blackberries each year, enough to put on our daily yogurt and freeze for the winter. (I would say “and to share” but I’m selfish where blackberries are concerned.)

While the blackberry bushes’ attempts to crowd out the viburnum and buffalo grass could be likened to the endless replication of cancer cells, they remind me of my cancer journey for other reasons.

First, their harvest season coincides with my treatment timeline. I had my mastectomy on July 15, 2008, and remember interrupting my blackberry picking several times to take phone calls from Bruce or Dr. Moshman as we were plotting our next steps.

One phone call that stands out for me was shortly after I started taking Tamoxifen. Dr. Moshman asked me to schedule a lab appointment to get some clotting tests. (Tamoxifen puts you at increased risk of blood clots.) Sure, no problem. I wondered why the lab tech said, “I hope you brought plenty of blood today,” until she pulled out 10 vials. I must have taken every clotting test known to mankind.

The other reason is more basic and possibly more instructive. Picking blackberries forces you to be in the moment. Sure, your mind can wander, but making your way through a blackberry patch provides plenty of sights and sounds that invite you to be here now. The flutter of wings when you startle a berry-loving robin. The intricate design of a banana spider’s web. The swallowtail butterfly weaving in and out of the neighboring dill.

Like pulling weeds, watching a baseball game or getting lost in a really good book, picking blackberries takes you out of yourself. Which is a very good thing where cancer is concerned. You can’t eradicate it from your life, but you can and should call the occasional time out.

What Survives of Us

Pam and me at my book launch party, September 2010

“What will survive of us is love.” -Philip Larkin

Pam broke the news on December 9th, over dinner at our house for an early Christmas celebration. She had stopped all her cancer treatment because her oncologist, who cried breaking the news, told Pam there was nothing more they could do for her. She was calm when she told us how she could feel her body shutting down. My brother-in-law Jeff, his partner Eddie and I cried. Bruce, my husband, did not, but he got a huge lump in his throat.

And then Pam did something I will never forget. She talked about how grateful she was for the life she had and for everything she had been able to do in 40 years. She talked about what a wonderful vacation we had together in Napa in October and about how much fun we were going to have that weekend.

And we did have fun. We went to the Old Market the next day and watched the Dickens carolers. We had lunch in our favorite French bistro. We sipped chocolate martinis in our favorite bar. We toasted being there, in that moment. Our standard toast two years earlier was “Here’s to getting to.” We had started counting toasts in Napa with ridiculous numbers; toast 4,205 or 5,622. We kept that going now.

In the breast cancer Twitter community we talk about being fearless friends. I am so far from fearless. I was scared for Pam all the time, and so was Bruce. We were afraid of what might go wrong when we were traveling together or she was visiting. Jeff was driving her somewhere one day toward the end and she suddenly went “Oh! Oh!” and scared the daylights out of him, but she had seen some fast food drive through she wanted to stop at for iced tea or a shake or something. What allowed us to be there for her was her incredible strength and steadfast refusal to let that thief cancer rob her of her joy in life. If she was tough enough to handle it, so were we.

She never stopped being interested in life. She wanted to know everything about our lives. She wanted to hear about school and work and food and wine. Bruce and I spent the weekend with her in her Kansas City home in early March, a month before she died. She said if you want to come, you should probably come sooner than later. 

She took us shopping and to lunches, to a speakeasy and dinner with her parents. We got pedicures and she brought champagne in her tote bag. She cooked. She drove–like a bat out of hell. She hugged me so hard when we left it was like being hugged by my cowgirl cousin, who throws hay bales. I could feel her spine. When we called to let her know we got back to Omaha, she was at her son’s baseball scrimmage, in spite of pain that had kept her on the couch. None of us will ever know what all that effort cost her. When the hospice nurse started coming to her house, she told Pam she wasn’t taking enough pain medication, but Pam had to do this her way. She put off the shrinking of her world as long as she could.

After she went to hospice, she was talking to my sister-in-law Anita about something Anita had made for dinner and said, “I want that recipe.” She knew she was never leaving the hospice; she was tough enough to make the choice to go there. You need to know this isn’t denial. This is insistence on being alive.

One of my favorite stories about Pam was from the night of my book launch two years ago. She bought a carrot cake at the restaurant where we had dinner because I mentioned I liked it. (She was like that. If you liked something, she remembered it and you ended up getting it as a gift.) We brought it home after the party and she set it on the kitchen counter. Jeff and Bruce and Eddie and I were all dithering–too late, too many calories, blah blah blah. Pam didn’t say a word. She pulled five forks out of the silverware drawer, came back to the cake and stabbed all the forks into it. We mauled that cake.

That was how Pam lived her life, and how she faced death. Straight on, no dithering, no excuses. If I can be half the woman she was when my time comes, it will be because she taught me how to live with joy and light and love, and how to face death with grace.

Here’s to you, Pam. Toast 10,373 and counting. I’ll raise my glass to you for as long as I live.