Breast cancer giving
Tonight I got a soliciting call (after two hang-ups earlier today from the same number). “Hello, ma’am, I’m So-and-So with NameOfFamousBreastCancerCharity.”
Me, cheerfully, “Hello.”
So-and-So: “I am calling because you know how important it is to help those that are struggling this with breast cancer this season, and I am soliciting donations for our charity. All of your monetary gift will be used to help people with breast cancer pay their bills.”
Me, having received a version of this phone call before, so I am very clear in what I want to say: “I appreciate your effort on behalf of your charity, but I myself have Stage IV breast cancer, and we are sufficiently burdened with our own responsibilities as we navigate cancer as a young family. Unfortunately, I don’t have the resources to donate as I am actually a member of the population you are seeking to serve.”
So-and-So: “Well, I am sorry. But sure does sound like you understand the weight and importance of our cause. I think you can help. Let me outline for you the breakdown of where your dollars will actually go…”
Interrupting her, I say, “Excuse me. I just told you that I have this disease in its worst form, and I politely declined to donate. Are you really asking me — a metastatic breast cancer patient who has said ‘no’ to your first request — again?”
So-and-So: “Yes ma’am.”
Me: “I can’t begin to tell you how invisible that makes me feel. Your representation of your organization certainly doesn’t speak to your desire to serve breast cancer patients like me.”
So-and-So: “I’m sorry you feel that way ma’am. We just need your help as we are trying to help breast cancer patients.”
Me: “I even don’t know what to say, but good night,” and I hung up.
I’ve probably received a half-dozen of these calls in the past three years. Each time, it has been similarly horrifying. I don’t mind the call itself; we are all subject to solicitations and they serve their purpose in our society. For me, the disappointment is always the response of the person who hears me tell them I have Stage IV and their indifferent response (or at least I perceive they are indifferent.) Worse, I’ve had others who are more aggressive and shaming than this woman was. I share it tonight because it made me mad, and anger is an emotion I rarely share. I’m feeling blah after today’s chemo, so I can’t run my anger out, as I sometimes would. So, I write. There are about seventeen ways that this charity could have trained this woman to respond if she actually spoke to — gasp — a human being with actual breast cancer:
-Can I ask you some questions to see if our services could directly benefit you?
-Should I leave you on our donation call list in hopes that you might one day have capacity to donate?
-Should I take you off our donation call list and connect you with our services arm?
-I’m sorry, and I wish you well. Have a good evening.
-Or, lets be honest, anything but badgering me and making me feel guilty and invisible.
My family and I have had some great experiences with breast cancer charities who have worked to make my quality of life better. Since I don’t want to give all charities (breast cancer or otherwise) a knock, I feel compelled to list them for you.
Camp Kesem OSU: Maren went to this free summer camp for kids impacted by a parent’s cancer last year, and we plan on sending both girls this year (Greta will be old enough!). These people stand in a brutally hard gap and make it fun!
Tina’s Angels: A little local organization with a big heart who has personally befriended me and reached out to make my quality of life better in meaningful, personal ways.
Karen Wellington Foundation: Focus on Fun. You can donate ‘fun money’ to send cancer patients out for Fun Only experiences, donate your airline miles to fly them on their trip, or you can donate a week at your vacation home. These people are fun experts.
Pink Ribbon Girls: These women provide meals, house-cleaning, rides, and support to breast cancer patients. They are a big local organization, and make things easier for the people they serve.
Komen Cincinnati has worked with me to increase visibility and support for the metastatic population. On the local page, there is no way to target your funds, but on the Komen national page, you can donate specifically to “Metastatic/Stage IV Breast Cancer Research.”
Phew. I feel better after getting it out. I’m not angry anymore, just a bit sad. I am going to resist the temptation to delete everything I just wrote. I’m also going to resist the temptation to outline for you our giving plan so that you don’t think I’m a jerk who doesn’t give to charity. I’m not really good at letting my ugly side show, obviously.
Unfortunately, this is a repeating problematic theme for me when I interact with Big Pink organizations or Pink Ribbon mania or, ugh, Pinktober; I come away feeling worse: invisible, unimportant, dying, irrelevant. It’s just so exceptionally bizarre to me that those are my prevalent emotions as I am the proverbial poster child for these organizations. I just can’t figure out how it keeps happening. All (literally, all) of my metastatic breast cancer friends feel the same way I do.
Since I’ve long identified this problem (but rarely share it as I feel I sound whiney), I had to decide what to do about it. Should I leverage my time and energy for the cause of the metastatic breast cancer patient and change the landscape? Ultimately, I decided no; that’s not what I want my legacy to be. I do, however, respect and admire the Stage IV women who are activists. Instead, I choose to love my people and keep my world rather small. On occasion, when I feel I can lend my voice to the Stage IV breast cancer advocacy arena, I do. This blog is one of those ways, I guess. I hope I’m making my own small steps to change that dynamic for the whole Stage IV population. But, most days, I simply focus on my own Do Today Well goals.
This moment, these thoughts, they are not representative of my mindset. This was, writing included, an hour of my day. I don’t spend much time contemplating breast cancer in any form: charities, scans, reports, cellular mutation, etc. I’m rarely (never?) edified by meditating on my problem, so I don’t do it. These thoughts that I share tonight are the synthesis of resolutions I’ve made over the past years when I bump into ugly emotions. I’ve resolved my perspective and position. I am forever entwined with breast cancer, but — oh no — it does not define me.
My impact in the breast cancer community is with the women I sit shoulder-to-shoulder with in the chemo room. It’s in my text threads. It’s in the smiles and cheer I bring. It’s the happy chatter I share with my medical team. It’s living well. It’s doing cancer with joy as I do all of my life with joy. It’s facing my burden with a good attitude. Early on when I asked Dr. Wonderful about going out or cancelling a celebratory occasion and the risk to my immuno-compromised self, he said, “We are doing all this treatment so you can live your life. Go live it well.” Eat the cake, clink the glass, go to the party, live the life.
Isn’t that a charge for all of us?
Let us — talking to myself here — focus on the good. *Clink!*