My Tribe Will Understand My Memory Issues

I can’t thank this community enough for your support after my last post. I have cried reading through your comments and emails, Facebook messages and texts. I was scared to share this part of my story. I was worried about what it would mean for my identity (because once you put it on the Internet there’s no going back). I was afraid about what it might mean to break ties with a community that’s become a second home.

I shouldn’t have worried. This is my tribe, and its members are not victims who cry foul when another gets good news. Instead, I mostly heard: this is a miracle, and we love you. One friend said, "We are not kicking you out just because you lucked out!"

I love you all right back.

I still had cancer. I still experienced nearly five years of metastatic cancer. Now I just have different appointments and different doctors to figure out what the best path forward is for me. I’ve got more pain and sometimes even miss the damn steroids. I’ve got similar levels of fatigue (apparently it wasn’t just the chemo). My chemobrain might be slowly retreating, but it’s been replaced by an anxious fear that perhaps none of my doctors know what they’re talking about.

I still feel scatter-brained most days.

And Chris occasionally makes fun of me, but keeping track of it all, then and still: the appointments, kindergarten volunteering, and now, also, a job search, is not something I can seem to manage on my phone. Calendars don’t sync, I fumble with my thumbs when trying to enter new appointments into my device at the end of one doctor’s visit and get frustrated, and inevitably ask for a print out of my follow up visits anyway.

I know. I sound like a dinosaur.

I prefer paper. I prefer a hardcover book, too, although I recognize the convenience of my Kindle for travel. But for my calendar? For keeping track of my life? It’s a spiral-bound monthly planner all the way. My 2016 one has photos of Quinn interspersed throughout, and I'll probably hold onto it forever for that. And because this year has been something else, amiright?

The cover of my 2016 planner. Photo taken by Jodi Lynn Wall, April 2015

A few weeks ago, a woman reached out to me to share her breast cancer story, and to ask if I’d be interested in trying out some of the products she’d designed for the company she works for, Erin Condren. You might have heard of them?

Would I like some paper and pens and organizing pockets and even a journal, too? Yes, please! Sign me up. In ink.

{photo source: www.erincondren.com}

And then I learned that a portion a full FIFTY PERCENT of the proceeds of these products would be donated to the Pink Lotus Foundation, which aims to provide treatments for underserved communities. To help women who don’t have the means or insurance to help themselves when they’re diagnosed with breast cancer. See, corporate America? There IS a way to do Pinktober correctly!

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Side note: do you know how much DISPARITY exists in breast cancer survival rates? That African American women are more likely to die of the disease, and that women of color are less likely to be given information about reconstruction options? That death rates are falling overall for breast cancer, but not nearly as quickly for women of color?

This is why I’ve walked the Avon Walk these past 5 years, with my team raising more than $100,000 to help underserved communities (and provide money for research). It is a cause near and dear to my heart because I have been fortunate, and I hope I don’t take a dollar of that for granted.

Do you remember my SIX THOUSAND DOLLAR shot? One shot. That I received probably fifteen times for just the cost of my copays.

Cancer is expensive. Treatment is expensive, transportation to/from doctor's offices is costly, and taking time off work to receive and recover from treatment isn't a viable option for many, many women. That's where organizations like the Pink Lotus Foundation and Avon come into play. I will support them as long as I'm able.

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Last week, I went in to have my thyroid checked, because I’ve gained an unusual amount of weight since stopping treatment. My thyroid appears fine, but my joints all ache. I’ve got an MRI of my knee today, and tomorrow an ultrasound of my right armpit for a painful lymph node (or possibly just the spot where my implant is sewn into scar tissue).

I missed the third presidential debate to be on a flight to Houston to attend a metastatic breast cancer conference as a patient advocate. From what I understand, SNL did a fine job of summarizing the two candidates. I'm going to order my "Nasty Woman" coffee mug as soon as I'm done writing this.

Before my flight to Texas, I helped Quinn's class of 27 kindergarteners plant beet and carrot seeds in their class garden. Friday was a school book fair, this weekend we had two birthday parties, a soccer game, and ASU's homecoming. Tomorrow is our 8th wedding anniversary. I can’t keep track of all that in my head! Pre-chemo, I might have been able to, but now I rely on writing everything down.

And I never do sponsored posts here. I don’t even know if this counts as one. But I did receive some free products, and I am vouching for their awesomeness, so here is my disclaimer. Also, send some love to our tribe member Sam if you get a chance. She’s doing good work, and keeping me a little less scatter-brained in the process.

Around the Web

I felt like I crawled across a finish line when Quinn finally fell asleep last night, even with my mom visiting last week to help lighten my load. Being a single parent is hard work (I know -- and it is hot in Phoenix, and the songs in Frozen are catchy), and I promise this is not a guilt trip, Chris. So my posting schedule is all over the place lately, but you guys are enjoying your summers at outdoor BBQs and lake homes and not reading blogs anyway, right?

For those of you still following along, here is what caught my attention on the web this week since my last one of these.

I kinda wish I'd done this.

Super early results, but exciting discoveries nonetheless.

"A study led by Princeton University researchers has revealed that the gene Metadherin - which is implicated in promoting the spread of breast cancer tumors - only stimulates tumor growth when the protein made by the gene interacts with a second protein known as SND1."

This sounds like a cartoon Quinn would want to watch: "Cyclotrons to the Rescue."

"Memorial Sloan Kettering has taken a leap into the future with the launch of a new cyclotron, a type of particle accelerator that will be used to produce radioactive molecules for PET imaging of cancers. The 44,000-pound instrument and the production facility built around it are expected to change the way our patients are diagnosed and treated by allowing doctors to examine and target tumors with increased precision."

One more breast cancer correlation to worry about...

Turns out there may be more than obesity and alcohol intake and the age you started menstruating and the age you had your first child (or whether you had children at all) and what deodorant you wear and how tight your bras are and now I'm just making things up (but you get the picture) to worry about when it comes to breast cancer risk. 

A test for non-hereditary breast cancer risk. (But will insurance cover it?)

And will the rate of prophylactic mastectomies rise as a result? I am not sure what I would have done had I known about my risk ahead of time, but that is probably a thought for another post.

A new treatment for Her-2+ breast cancers? 

"In further experiments on mice, they used another treatment called 264RAD to target this molecule and found it completely eradicated the tumours. They will now carry out trials on women to test how well this treatment works alongside Herceptin."

If you remember, Herceptin was one of the drugs I was on for more than twenty-one months. Kadcyla, the drug I'm on now, is a chemo piggy-backed to Herceptin. It seems to be working, but I am always on the lookout for new treatment options coming down the pike.

And speaking of crawling across a finish line...

Just 5 more days until my team and I walk nearly 40 miles in 2 days to highlight our masochism the fight against breast cancer. If you'd still like to contribute, just click the link above. Or buy me a beer at the finish line in San Francisco.