Jun 5, 2017

A month since last Abraxane

I had my last dose of Abraxane on June 1 and the pneumonia came on some time after that. Let's say it's been three weeks since I started the antibiotics and while I am no longer sneezing and coughing, I'm still easily fatigued. It's easy to sleep for 18 hours and then take a nap as well.

The only remaining chemo issues relate to my nails. I have begun to lose three fingernails, which is new to me. There are new nails growing under the dying ones, but it's hard not to pick at the top layer although I know I shouldn't.

My former port site is still undergoing wound treatment weekly. They tell me it's no worse than last time, which I take to mean that it's healing very slowly. There may be nerve damage as well, which would explain the zinging pain that hits me out of the blue.

I wish I had more energy to put into the garden, but even pick ing some raspberries and our small crop of cherries was demanding.

I hate to complain, but this has been a very long month and I'm actually looking forward to whatever comes next.

May 22, 2017

The latest treatment idea

I saw Dr G yesterday and we discussed a number of things.

My pneumonia is resolving. Yay! Evidently the pneumonia vaccine I received in 2013 didn't cover this strain, but it's too soon for me to receive another vaccine.

He had my tumor tested for the androgen receptor and the result came back positive. He'll contact Dr Julie Gralow, a local, renowned breast cancer expert, to review the result with her, and if she approves, I'll start bicalutamide (Casodex). Although this drug is usually given to men with prostate cancer, it might be effective for me.

Dr G also had my tumor tested for micro satellite instability. The results showed the tumor is stable, which you would think would be the "right" response. But this means the newest therapies might not work for me and I would not be eligible for such clinical trials. It might be worthwhile to re-test my tumor for ER/PR status. If it's changed to triple negative, which isn't too likely in my opinion, it might change my eligibility for said trials.

If Dr Gralow does not recommend bicalutamide, I will start Taxol in a little over two weeks (or, as Dr G puts it, after Tisha b'Av). I wouldn't say he's exactly superstitious, but it makes a certain kind of sense not to start new chemo during the lead up to a major Jewish fast day.

May 8, 2017

When cancer organizations get it totally wrong

It's worth reading about how Young Survival Coalition, Stupid Cancer and Fuck Cancer missed the message in their corporate partnership with Spencer.


An Open Letter to Young Survival Coalition



UPDATE July 10: YSC has taken down the Facebook post about this campaign, but Spencer Gifts is still listed as a sponsor on the YSC website. I haven’t received a response from them to this post yet.
Dear YSC:
I’m an under-40 woman living with metastatic breast cancer. I’m your demographic, the one your programs are designed to help. And you HAVE helped me–I even go to a support group for young metsters organized by a YSC volunteer. Which is why I think I’m the most disappointed in you, even more so than Stupid Cancer or F*ck Cancer, for being involved in this.
 
See what it says at the top of this? That’s right, it says “Boobies make me smile.” And of course it says it twice, because we all have two boobies. I see what you did there! Hahaha, how clever! 
Oh wait, no it’s not. It’s actually horribly offensive.
I don’t have two boobies. I only have one. They cut off the other one because it had an enormous tumor in it. And the most horrible part of that is, I’m STILL going to die of metastatic breast cancer.
There have been plenty of studies done about how the sexualization of breast cancer hurts breast cancer patients. First off, supposedly funny and edgy slogans like “save the tatas” and “boobies make me smile” trivialize a disease that kills 522,000 women and men worldwide every single year. The death toll in the US has been 40,000 per year for decades. How is the thing that kills those women supposed to be funny? How are those of us who will die of this disease supposed to feel about this joke?
Secondly, focusing on our disease originating in our breasts, rather than seeing us as whole people, dehumanizes us. And it makes women feel that if they have a mastectomy, they’re no longer worthwhile, or feminine, or real women. When I lost my breast, it almost broke me emotionally. Almost. This sort of campaign brings me right back to that feeling, and it does the same for many other women who have had their breasts amputated in a desperate attempt to save our lives–because our lives are what matter, not our breasts. 
Campaigns like this do real damage to breast cancer patients. And I know that you know this, because right next to where this image appears on the YSC Facebook page, you’ve got a video about how breast cancer surgery impacts women’s feelings of self-worth. 
I expect this kind of insensitivity from a porn industry executive trying to get some cheap publicity. But not from you, YSC. I expect you not to make women who have had a body part amputated feel worse about themselves. I expect you to know that this type of campaign is absolutely the worst kind of cause marketing. And yet, there is your logo at the bottom of the poster, and there’s this image proudly displayed on your Facebook page.
Speaking of your Facebook page, several of us pointed all of this out to you in comments on that photo there. Let me quote your complete non-apology here:
“We apologize if this post was offensive. We would like to clarify that the “Boobies Make Me Smile” slogan is not a YSC slogan, it is the name of Spencer’s Foundation. Our bracelet is called “Survivor Strength.” We partner with Spencer’s to promote breast health education among their young consumers and over the last 8 years have reached countless young women to empower them to be their own best health advocate. It is always our goal to inform and empower young women with breast cancer, and we’re sincerely sorry if this post was insensitive.”
If?!?! If this post was insensitive? If this post was offensive? It’s your goal to empower young women with breast cancer, while you trivialize their disease and marginalize those of us who have lost a body part to it? Really? And how is the fact that Spencer’s foundation is called “Boobies Make Me Smile” a reason not to be offended? You’re telling me that you actually decided to partner with an organization called “Boobies Make Me Smile?” Are you kidding me? 
I know you need money to support the important programs you run. We all understand that. But you undercut the power of those programs and the support you give to young women with breast cancer when you turn around and partner with an organization whose very name is offensive. How can we take you seriously after this? How can we believe that you really have our backs, when you turn around and throw us under the bus to make a quick buck?
I beg you, before further damage is done, to withdraw from your partnership with Spencer Gifts and give them their dirty money back. If you don’t, I know an awful lot of young women who will no longer be able to support you in good conscience, myself included.
Sincerely,
Beth Caldwell

May 1, 2017

This is just too perky for me

My gag reflex is kicking in. This woman has metastatic breast cancer and is successfully being treated by Ibrance according to her perky oncologist. It isn't news, it feels like an Ibrance commercial.


I have the urge to barf. I'm sorry but its true. And yes its that really expensive new treatment.

And my inner marketing person says this kind of news article is really a type of advertising. I am not saying that anyone in the video did anything wrong. But marketing comes in all forms. And Pfizer is making big bucks on Ibrance.
You can read that article here. Okay, my inner witchy cynic is showing this morning. Maybe I need a nap or something.