Dearest Liver,
As per usual it seems, you managed to throw anther wrench in my life. I was pulled from the immunotherapy study shortly after my last post and put back on IV chemo. Per my request, it’s the same IV chemo that I was on the last time. It’s supposed to give me less neuropathy than the taxol based drugs and also wasn’t supposed to make my hair fall out. Of course I have more neuropathy than before and of course my hair fell out… Although I sort of think that has more to do with the drugs that went with the immunotherapy than this chemo. (I promise to add blog posts about both topics soon.)
The hardest part of this whole situation is that I learned that I’ve pretty much run out of standard of care drugs. There are a few more IV chemo options (the taxol based ones I’m trying to avoid of course), but besides that I’ve tried everything that currently exists. I’m not really sure how many options I thought were out there, but every other time a drug stopped working my doctor spoke of back up plans. This time when I asked what happens when the drugs stop working, as they always do, she spoke to me about dying. About how my liver would stop functioning and one day I would just go to sleep and never wake up.
This was the first time we’d had a conversation like this and it threw me. You’d think that having stage 4 metastatic cancer would be enough to make me think about death, but it’s just not something my brain can process or accept. I’m not sure if one can actively will cancer into submission, but I’m sure as fuck going to try. I refuse to take this news without putting up a fight. So along with chemo every other week and working a full time job that often includes 12 hr days, I’m trying to find a way to raise money for my doctor’s research fund at UCSF.
After 6 weeks of trying to find a company that would work with me, I’ve launched a t-shirt fundraiser with my favorite slogan and logo, fuck cancer! (Only with an added twist, from my amazing sister.) All of the proceeds from the shirts go directly to my doctor’s fund. I’m personally SO EXCITED to get the shirts, I seriously want to wear it to every chemo ever. I rationally know that I’ll never be able to raise the kind of money needed with just a t-shirt campaign, but at least I’m doing something. And that makes me feel like I’m not just sitting around waiting for my options to run out.
Want to hear something crazy? One of my good friends works at Facebook and was helping me promote my fundraiser through ads and I started to get hate messages from people who were OFFENDED by my shirts. I guess they were mostly offended by my use of the word fuck, but this is what gets me: how can you be offended by the word fuck when it’s followed by cancer? The shirt even says “Fuck C*ncer *Only one obscene word here” since clearly the worst part of this phrase is cancer. Now I get that no everyone likes to use “foul language” and probably don’t use the f word quite as often as I do, but REALLY???
I might have let the whole thing go, until I saw this response. “As a survivor, I don’t like this language. …..who ever had this idea has never experienced such a dreadful experience with cancer. ..I ask you delete this item”
- If she clicked on the ad or even bothered to READ the first line of text that showed up with it, she’d see that I wrote that I have stage 4 metastatic cancer. I’ve clearly experienced cancer… The whole point of the shirt is to raise money to get me off chemo. Read people!
- She claims to be a high school teacher in a later post and is offended that this isn’t appropriate for kids to wear to school. She clearly needs someone to teach her to read and how to appropriately use an ellipsis. Just saying…
- No one asked for your opinion. People deal with things in very different ways. Saying fuck cancer makes me feel a little better about it, as do many people. If you don’t like it, don’t buy one. It’s pretty simple. Stop being an internet troll.
Apparently I offended enough people that one of them flagged my ad and it was taken down. It’s not the end of the world and I don’t know how many sales I’ve gotten from it, but it baffles me as to how anyone could be that offended by a word. I did get some amazing posts from my friends and people who are supportive of me and my cause, and for that I am thankful! I’ve also sold 74 items so far and still have 11 more days of the campaign. And I might repost it after the first round so I can use photos of me and my friends in my awesome shirts to try and sell even more of them.
If you’d like to buy a shirt in support of my cause, you can get one from www.teespring.com/fuckcancer or you can make a donation directly to my doctor’s fund by clicking here. If you donate directly, please make sure to click choose a designation and pick other and type “Hope Rugo Breast Cancer Research Fund” so that the money goes to her fund.
I would like to leave this final thought to those offended:
[wpvideo AOHdZlfL]
(This video is from YouTube: https://www.youtube.com/watch?v=c0LBi1MHoaU)
Love and kisses,
Robin
Here are some of the posts if you wanted to read them.
Its probably on there Robin, but where does one find your t-shirt
Dear Robin,
I could not stop thinking about you after we met at chemo this past Tuesday. So immediately after I got home, I sat down at my computer to take a look at your blog. I only had a short spurt of uninterrupted time, so I quickly read this post and then left the page open so I could get back to it and read through everything. And now, having met you of course, your words have left an indelible impression on me. Jeezus, where do I even begin? First of all, when you came in and sat down across from me, my first thought was: ‘She’s way too fucking young for this cancer shit…’ And then after I got unplugged and we began to talk, I really just wanted to wrap you in my arms as motherly protection instinct immediately kicked in, so we could both SCREAM together at the top of our lungs: F.U.C.K. C.A.N.C.E.R. Again and again. You are far braver than I am. SKY DIVING?! NO f-ing way could I leap from a damn plane, or a bridge, or anything else not attached to terra firma. I am terrified of heights. Maybe (that’s the operative word here), just MAYBE with a solid slug or two of something like pear brandy, I could throw all caution to the wind and just leap…screaming FUCK CANCER as I go. What the hell, right?! I love that you have researched and studied this shitty disease (as have I) and that you too are with the WONDERFUL Dr. Hope. WE are in good hands…for however long she can pull miracles on our behalf. And damn, I wish I’d taken more biology classes in college. The best educational grasp I got on a closeup view of cancer was watching that six hour film documentary by Ken Burns called ‘The Emperor of All Maladies’ (based on book of the same title). Fascinating to learn that cancer has been around for thousands of years, and to see exactly how research has evolved over the past several decades. Like you, I too feel ‘alone’ sometimes. People have faded away, but there are others who’ve stepped forward. I forgive those who’ve wandered off…it’s the kind of diagnosis that makes them clearly uncomfortable, and if they feel awkward, they should in fact move along. Some I thought were GOOD friends, but now I know…not so much. Life is short. Time to weed the crap out of the daily stuff. So I’ve even cleaned out the un-necessaries from my Facebook ‘friends’ (to the horror of my daughter. “MOM! You can’t just UNFRIEND them!!” Well, YES I can. They add nothing to my enjoyment of life…and in fact some of them just piss me off with their stupid whiny posts about dumb shit. So, I adios’d them.) Robin, don’t hesitate to reach out ANYTIME if you want an ear. And I mean that sincerely. I am getting chemo every three weeks, always on Tuesdays and usually mid-day to early afternoon, unless it’s a HOPE day, in which case…well, you know how that goes. I will watch for you when I’m there. Just read your recent tweet on the side bar here..so I see the SE’s of the chemo are CRAPPY this week. Wrapping you in hugs and hoping as the hours elapse today, you begin to feel ever so much better. Pretzels were my nausea go-to too. But haven’t had to deal with nausea much, since they give me Aloxi in the drip first prior to the chemo crap. Helps a ton. Hang in there…thinking of you!
–Ann Jewett
#CANCERFUCKINGSUCKS #STAGEFOURNEEDSMORE #LIVETHEDASH
Hey Ann, it was so lovely meeting you too! As crappy as chemo is, I’m always amazed by how the infusion center feels like home and the people there feel like family. I guess it’s easy for us to connect when we’re all dealing with the same bullshit! Thank you so much for your kind words and encouragement. I’m excited to read your blog (when my brain is less foggy) and I hope to see you there again soon! My current treatment is every other week, but Hope is letting me adjust my schedule so that I don’t have chemo the week of my wedding. 🙂 I’ll be there on Oct 18th. Is that one of your off weeks? I will reach out to you soon, I’d love to talk more! XO
That is the best motherfuckin’ video of all time- Fuck cancer!!!
Great T shirt … Thats what i would say about cancer.. Fuck cancer!!!!
Thank you! It’s nice to hear that I’m not the only one. 🙂