Hi, I’m Robin.

I was diagnosed with stage 3 breast cancer at 21 and stage 4 metastatic breast cancer 4 years ago. This means the cancer spread to other parts of my body, mostly my liver and bones, and because of that I will never be cancer free again. My cancer’s super aggressive and in 4 years I’ve run through of all of the standard of care drugs and a few clinical trials.

Most women in their early thirties are mapping out their futures. They’re planning their next career moves, working out travel plans, maybe starting families. Here I am today, out of options, praying for a new study drug or miracle cure, and also planning for my death at 33. 

Read More ➪

Remembering Robin

Robin passed away on the morning of July 1, surrounded by people who loved her more than anything in the world.

It was important to Robin to provide a place where her friends and family could gather together and share our favorite memories. She also wanted to explain to everyone what has been going on in her life over the last year, which she did in her final blog post.

Please use the comments section of that post to share your thoughts, feelings, memories, and anything that reminds you of our girl Robin.

Share your Memories ➪

In the spring of 2017, Robin’s friend and former business partner, Kristin Dudley, interviewed Robin about her life’s journey.

How you can help

hope rugo breast cancer research fund at uscf

Support research by my amazing doctor by donating to the Hope Rugo Breast Cancer Research Fund at UCSF. 

fuck cancer shirts for the Hope Rugo Research Fund

Get your very own fuck cancer shirts to support the Hope Rugo Breast Cancer Research Fund at UCSF through TeeSpring.com/fuckcancer

Blog

June 30, 2017Dearest Liver Sorry for the long break in the posting . Things in my world have been a little complicated. I have, however, been able to raise over $2600 in my tee shirt campaign which supports Dr. Rugo’s research fund. On October 16, 2016 I got married. I made most of the paper flowers that we used for the wedding. The wedding was the best day of my life! I definitely married the best person in the world. A few days after the wedding, I had a procedure on my liver called TACE where the blood supply  to a small part of the liver is blocked with chemo therapy beads. The procedure nearly killed me, but once recovered, was able to take a few trips even though I was put back on IV chemo. I stopped IV chemo in February. Then I took a fantastic two-week trip to Europe. I got to see much of the art that I studied in college. Another check off my bucket list! I fell in love with the art a little bit more. When I returned, I tried several different oral chemos, none of which worked. They gave me more side effects than effective shrinkage of my tumor. About eight weeks ago I stopped taking any oral chemo drugs because they were ineffective in slowing the progression of my tumor, but were very effective in making me sick. Since that time I have gone into progressive liver failure which included jaundice, massive liver enlargement causing severe pain, swelling in my abdomen and legs, and mental confusion. I have stopped communicating with most people. This gives the impression of being antisocial. I want everyone to know that I loved and appreciated your contact, but I was physically and mentally unable to communicate with you. Thanks for all of your love and support over the years. It has meant the world to me. It was important to Robin to provide a place where her friends and family could gather together and share our favorite memories.  Please use the comments section of that post to share your thoughts, feelings, memories, and anything that reminds you of our girl Robin. [...]
April 11, 2016Dearest 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: (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. [...]
January 27, 2016Dearest Liver, The last couple of weeks have been really hard on me. I had my first scan from the new clinical trial I’m on, an immunotherapy drug, and it didn’t go so well. I knew it was a likely outcome since this drug is known to take a while to work, but it still sent me into a tailspin. Then I found out the next day that my beloved port-a-cath needed to be removed because the hole in the skin that had been ignored as just a spot of thin skin for 9 months was actually a hole where my port was exposed. I has surgery the following day to remove it, have to wait for it to heal completely, and then will have surgery to put in my third port. When I reflect on the last 3 years of cancer treatment for metastatic cancer and 11 years of overall cancer treatment, there are some big things that stand out to me. I know I’ve posted about feeling alone and forgotten by some friends in the past, but that has made me really appreciate the people who have stuck with me. The kind of people that drop everything to go to appointments or surgeries with me, fly across the country to spend a chemo weekend with me watching bad tv, drive a few hours in rush hour traffic to take me to chemo so that I don’t have to go alone, or just remember to send me good thoughts and love through texts or phone calls. I will be forever grateful for all of you and love you fiercely. One of these extraordinary people, Jill, has become someone I can’t imagine not having in my life. She’s wonderful and caring and even though she doesn’t always live near me, when we see each other I feel a strong sense of home. She’s always one of the first people I reach out to when I need mental support, even if it’s just through a text message, and has actually driven 2 hrs to SF to take me to a chemo appointment (twice) just so that I didn’t have to go alone. I was texting Jill during my week long meltdown over my scans and port and she calmed me down with reason telling me that her boyfriend, Mat, wanted us to work on not freaking out over the things we can’t change. People tell me that all the time, but for some reason it seemed to help this time. Maybe it was also the ativan I took, but Jill and Mat have taught me a lot about how to enjoy life, do the things that are really important to me, and live it up, since who knows how long any of us have left in this life. (They even talked me into going skydiving with them for my 31st birthday!) The next week my world was shaken by the news that Mat died in a bad BASE jumping accident. I’ve lost a lot of friends in my life, but something about this man who was so full of life, love, fun, and smiles broke my heart. Not even to mention how broken hearted I am for Jill. In I’ve lost a lot of friends (mainly to cancer), but this was different somehow. This makes me question my life choices and wonder if I really am living my life to the fullest. I had a long internal debate with myself on the drive home from Santa Cruz after seeing Jill on Sunday and I couldn’t figure out why I put so much emphasis on work. Shouldn’t I be putting my friends, my family, and me ahead of some crazy deadline or need to work? Why do I feel like I don’t have a purpose when I don’t have a job? Is it just because of how expensive the city I choose to live in has become? I thought a lot about it and came to this conclusion, I really like what I do. Yes, I think I should live it up as much as possible and savor every moment, knowing there are a finite number of them.  But my work defines who I am. Since developing lymphedema 10 years ago, I have spent most of my time helping other patients and creating new programs and tools for them. And maybe that’s ok, maybe this is how I will leave my mark on the world. How I helped make it a better place. All I know is right now, I’m sending love out in the universe for my dear friend and trying desperately to keep my own life together. I guess I’ll try and follow Mat’s advice and not freak out too much until I have real answers after my next scan. Love and kisses, Robin [...]
December 30, 2015Dearest Liver, Sorry for the 2 post meltdown and then radio silence. I lucked out this time and my doc found me a new trial to go on. I’m taking 2 oral drugs, Tamoxifen (again) and Vorinostat, and I get an infusion of an immunotherapy drug every 3 weeks. So far, so good. I actually feel fairly normal on this drug and there are only minor side effects. My platelets are low so my legs look like I’ve been in some sort of crazy fight and there’s maybe a little fatigue, but it’s hard to tell with the number of hours I’ve been working recently. The worst side effect from these drugs so far is my messed up taste buds or “Chemo Mouth” as some people call it. A few weeks ago I was having the problem that everything I ate tasted like metal and now everything tastes like salt. EVERYTHING! Sweet things are actually sort of worse than foods that should have salt in them. It’s to the point that I don’t even want to eat b/c everything tastes so nasty, but I know that I have to. I got some great tips from fellow cancer buddies in the Twitter universe, but not many of them have helped me so far. For the metallic taste, I stayed away from red meats, used plastic cutlery, and ate a lot of pineapple, which surprisingly still tastes ok. This salty problem just hit me on Christmas day. I did what all self respecting Jews do on Christmas, ordered Chinese food, and got 1/2 way through some soup when I realized that all I could taste was salt. I’ve also apparently lost the tastebuds for sour/tart things because I drank a whole glass of cranberry juice and it just tasted like water. I have been told to try putting lemon juice on foods, but it hasn’t really helped me yet. I will let you know if anything actually works for me so that I can try to help others in similar situations. For now I just need to get through the struggle of eating. It’s sad that food used to be my favorite thing. I love to cook and try new things and just eat in general. Now I’m in need of the calories and nutrients and I can’t force things down. Fucking cancer… ruining everything I like about life once again! Love and Kisses, Robin [...]
October 21, 2015Dearest Liver, Clearly my meltdown tonight is driving me to write two posts. This one I intend to update and hopefully check somethings off of. Maybe I’ll even make it a new section. I’ve never officially had a bucket list, but why not start one right? I’m not really sure how to break this down, so let me know if I should organize it better. None of these are in any order of importance… Travel Germany – for work with my new job, but also to see the Foeldi clinic (which will be explained more later) Australia – because it looks amazing, but also to visit my awesome friend Stef. New Zealand – it’s close to Australia, but I’m also losing some of my best friends/honestly more like family members to there in a few weeks, and I want to see what life is like for them in their new home! Japan – it’s always high on my list. All of Europe. I want to see museums, where the masters actually stood to be inspired, beautiful scenery, and be a part of history until my heart is full of beauty and my stomach is full of amazing foods. Tahiti – I want to stay in a cottage on stilts over water, especially one with class floors so I can see the fish swimming beneath me. I want to go to that island where you can swim with pigs. I want to eat all of my favorite Asian foods in their native countries, I want to see beautiful temples and history. Egypt – Egyptian history has always fascinated me and I want to see it up close and personal. Personal Goals: I want to have my lymphedema treated by Ethel Foeldi at the Foeldi clinic in Germany. Even just for a minute. I want to finish building a project that I am proud of. I want to spread lymphedema awareness globally so that patients get diagnosed and get treated when they should be, I want to TALK ABOUT LYMPHEDEMA ON THE ELLEN SHOW! And if it’s not me, maybe Kathy Bates can do it for me? I want to thank Kathy Bates for being the first celebrity EVER to talk about lymphedema publicly. She will get much further than I ever would. I want to be part of a study that will one day save someone else from this horrific fate. I want to be on the board of an org I believe in. Life Experiences: I want someone to love me, even though I’m damaged goods.  (I’m counting my wonderful, beautiful, amazing life partner Erin for this. She loves me unconditionally and has even made us amazing wooden engagement rings so that we can get married!) I want to fly. I’m crossing this one off b/c my girl Jill took me skydiving and it’s about the closest I think I’ll ever come. I want to go to the Hall of Fame induction for Ray Lewis, with VIP passes to the events. (2018) I want to wake up refreshed one day after sleeping. Without taking awake drugs. I want to be an old lady in a Chanel suit that goes to lunch to plan some charity event. I want to live long enough to see an actual cure for cancer. I want my doc to call me one day and make me cry for hours b/c of the good news she told me. I want to fly to Baltimore and tell my mom in person, and cry together. I want to remove my messed up port knowing I’ll never need it again, knowing that chemo was a thing of my past. I want a house in the forrest in Sonoma County, a house on a warm beach, and a condo in at least 3 major cities worldwide. There must be more, since my professional section seems to take up more than my life experiences section, but I’ll update as I think of things. [...]
October 21, 2015Dearest Liver, Sorry that I’ve been away so long. For a while I was feeling well and I didn’t want to take time away from that to sit down and write. I was having fun with my friends, dancing whenever possible, and finally traveling and doing things I wanted to do. It was amazing, and even though I KNEW that it wasn’t going to last, I couldn’t comprehend how horrible it was going to feel when that was pulled away from me again. I tried to prep myself for it, thinking that if I lived it up and enjoyed all of the moments I had, when I was torn down back into my fucked up reality of metastatic cancer it wouldn’t be so bad. Like somehow I would be able to weather the storm of the next rough patch by reliving the nice parts of my chemo break in my head. The problem is, it’s a fucking lie. The more fun I have and the more I feel “normal” the more I want it to last forever. One super fun vacation makes me want to go on 5 more. I want to see and experience everything. Part of me knows it’s because I won’t last forever, but the rest of me shuts that part up and enjoys it. So now, after speaking with my doctor tonight about how I probably need to go back on IV chemo, even for just a little bit, I don’t know how to face it. How do you know knowingly go back to a life that can’t be counted as a real life? Sign up for poison to be pumped into your veins. For every actively growing cell in your body to be killed so that the cancer hopefully will be too? Sign up for nausea, fatigue, neupogen (and its severe bone pain), drugs that treat one side effect but cause 3 more, and probably hair loss this time too. If this ends up being my doc’s game plan, it’ll be the first time I’ve really looked like a cancer patient (besides the cancer skinny thing that I’ve taken to a gross extreme) in 10 years. For the past almost 3 years of my metastatic cancer journey, at least people told me that I don’t really look sick, or that they can’t tell. But hair loss = cancer patient. It means that not only do I have to live with it internally all of the time, but I will now have to deal with the fake looks of sympathy and the fucking head tilt that makes me furious. I don’t know how to face it. People tell me I’m strong, but I don’t feel that way right now. I know I’m not strong enough to give up, so I’m going to do whatever my doctor tells me to do. I trust her and know she’s always trying to consider what I want into decisions about what I need. It sort of seems like insanity… to keep signing up for horrible chemo hoping for better results. But where does one find the strength to do this? And to make things worse, it’s still fucking breast cancer month. The media tries to be supportive, but if they really want to know, THIS IS WHAT CANCER LOOKS LIKE. This is me, 32 years old, been fighting cancer for over 10 years, and I’m still reduced to a sad crying mess surrounded by moving boxes that I lost the will to pack, and a stack of work that I need to do, but am slightly afraid that it’s pointless b/c who wants to keep a contractor on staff when are going to be sick? (Don’t know if I mentioned it or not, but I landed a super exciting new job! We’ll see if that lasts with all of this.) So my dearest liver… I’m sorry for the long-winded message. I’m also sorry that I’m crying so hard that I can barely see the screen so my grammar is probably horrible. But mostly, can you PLEASE SETTLE THE FUCK DOWN SO THAT I CAN LIVE A PRETEND NORMAL LIFE? Robin [...]
July 9, 2015Dearest Liver, I can’t figure out if this is just me, or if others are like this, but I feel like I always have my cancer freak outs at night. The annoying time when it’s too late to call my friends or my dad and I’m stuck thinking the absolute worst thoughts until the morning. Tonight I was lying in bed trying to fall asleep (a task thay has been harder and harder recently) and I felt a weird pain in my sternum. As I touched the area I felt a bump that I am now convinced is a new met. It might be just the way that area has always felt, or maybe I’m just noticing it b/c I am having a hard time keeping on weight and I can feel my bones more.  It’s probably nothing, but of course, because it is 1:30 am and I’m all alone, my brain is going to the worst possible conclusion. If only I could train my dog to sniff out mets for me. Or maybe I should start the Middle Of the Night Cancer Freakout Hotline. I bet we would probably feed off each other and make it worse. I’m seeing my doc next week and sent my poor NP another middle of the night freak out email talking about said bump and asking if I have known mets on my sternum. Maybe I should save my middle of the night cancer emails and publish them. I wonder if I could turn them into a tragic/beautiful coffee table book. Or more likely a sad, self published e-book. Sorry for the middle of the night freak out blog post dearest liver. Could you do me a favor and keep mysterious symptoms to banking hours? I just want to sleep like a normal person. Maybe I should see if I can bump up my drugs for sleeping… Love and kisses, Robin P.S. Just because I feel like I need something positive in this post, look at my adorable snuggle buddy, Honey. [...]
June 16, 2015Dearest Liver, I’m so sorry for the break in blogging. It’s a little funny that my last post on here was about being a newly enthusiastic blogger and then I stopped blogging for a while. I started a few posts, but never quite finished them. I have been taking the new drugs for a few months now and I started to feel like a real person again in April. It is amazing and I found myself wanting to do all the things that people asked me to do. Not to say that I was going super crazy, but after feeling sick non-stop for 6 months, I was all about dinner with friends and birthday celebrations and anything else that sounded fun. I even went to Mexico and it was amazing!! It was also exhausting. I could feel the minute that my body wanted to go home and lay down, but somehow my brain just wouldn’t agree. I wanted just a few more minutes, which usually turned into a few more hours… It’s so hard to rationalize going home and sitting down when that’s essentially all you did for 6 months! Happily, I feel like I’ve finally found the balance. I caught up with friends and now feel like a real member of society again. What a glorious feeling! I have no idea how long this drug cocktail will work, so I’m going to take the advice of my cancer ass-whooping coach aka, my amazing oncology NP, Sheila, and live it up while I’m feeling good. Life is short, and even shorter for some of us, there isn’t time to waste! Live it up while you can and do ALL the things! Love and kisses, Robin p.s. Thank you to my amazing friends that helped welcome me back to the world of the “normal people” and hung out with me. I love you all so much! [...]
March 21, 2015Dearest Liver, When I was first diagnosed with cancer in 2005 everyone told me that I should make a blog. I was in a much different head space the first time around and didn’t see how it would help me. Then I was diagnosed with metastatic cancer 2 years ago and everything changed. I was struggling with a way to cope and decided to give this a try. It seemed like a good way to vent my thoughts and spare my family and friends from having to talk about my cancer all of the time. For the first few months only my mom and my friend Katie were reading it, and felt nice to have a sort of release. Then a few people found my blog, liked it, and gave me a little positive feedback and now I’m hooked. I might now be writing as much as I want to, but I’m hoping to change that. I’m even thinking about going back and writing about some of my experiences the first time through. So stay tuned for that! Maybe by expressing some of what I went through the first time I’ll be able to better process it and use it this time through. The funniest part is, for someone who wasn’t into blogs, I now have a second blog dealing exclusively with my lymphedema. So I’m splitting my blog time a little here, I hope you don’t get jealous, dearest liver. I think it’ll be good. You can read that one too if you want! www.lifewithlymphedema.com Love and kisses, Robin [...]
March 10, 2015Dearest Liver, My latest scan showed that you are still responding to the chemo and shrinking, so after a few tears, a few meltdown emails, and some begging on my part Dr. Rugo gave me a bit of a break. My dad called it a “drug holiday” at first, which I have to admit sounds way more fun than just NOT taking drugs, but it was nice to let my body recover for a bit. Now I have been switched over to a hormone therapy drug that consists of two HUGE shots in the butt. The shots are supposed to be monthly, but I have to get them every 2 weeks for the first 3 injections. Then they start being once a month. Tomorrow is my second shot, so I’ve made it through the first 2 weeks pretty much major side effect free. I’m still overly exhausted all of the time, but I don’t think that will go away anytime soon. Besides that, I’m starting to feel like a real person again. After 6 months of chemo it’s weird to not feel gross all of the time, but in the best way possible. I’m trying to be optimistic, but still realistic at the same time. The former aggressiveness of my tumors makes me worry that this sort of treatment isn’t going to work, but I’ll just have to wait and see. At the very least at least I’m getting a break I guess! I guess we’ll see how the next one goes, but I’m hoping you can chill the F out for a bit and give me a break! Love and kisses, Robin p.s. my butt STILL hurts from the last shot! I’ve never experienced a shot that hurts for 2 weeks! It’s a little crazy… [...]
March 4, 2015Dearest Liver, Chronic illness is the thing that I struggle with the most in my current situation. It’s the thing that makes me feel alone and sad and tends to trigger most of my recent meltdowns. It’s also something no one will ever fully understand unless they have the misfortune of having it, so I thought I could try and explain it to you. When I was first diagnosed with metastatic cancer, I felt lucky to have such an amazing support system of family and friends. It was really hard to process the idea of having incurable cancer. I was just about to turn 30 and the thought of being “that cancer girl” for the rest of my life horrified me. My friends made jokes with me and told me that I was stupid for thinking that no one would ever love me or want to be with me because I have cancer. They were a shoulder to cry on and would take me out drinking and dancing whenever I needed a break from reality. Things started changing after a couple of months of my treatment though. The initial shock of my cancer diagnosis was gone and although I was still struggling with treatment and side effects, life moved on for everyone else. I was told by a few very well intentioned friends that they were concerned that I was too obsessed with it and if I could just stop thinking about it, I would be better off. I felt like I was given the standard breakup recovery timeline, but it didn’t work in this situation. When you first break up with someone your friends rally around you, support you, and do whatever they can to help transition you into single life and eventually dating again. But there is a threshold for how long people want to hear about it before they tell you to just move on. I’ve been on both sides of the breakup support system and am the first to admit that I am guilty of the same thing. My favorite breakup advice is “the best way to get over someone is to get under someone else.” The problem with cancer, however, is that there isn’t any sort of quick fix to get you over it. I spend much of my time being pumped full of poison, taking drugs to help with side effects of that, and then others to help with side effects from those drugs, etc. Every morning I wake up I feeling like I got run over by a truck. I’m exhausted, achy, nauseous, extra sensitive to smells, and mostly just wanting to crawl back under my covers and hide. The worst part is that I can’t talk to most people about it anymore. I can see the looks in my friends’ eyes when I mention the C word and I shut down. I HATE that I have become the Debbie Downer of my groups of friends and I hate that I don’t have the energy to go out and do the things I used to love to do. I used to love to be out talking to people, networking, and socializing. These days I find many of those interactions stressful. I avoid talking about myself as much as possible, and have become the master of changing topics. People usually want to have a good time, they don’t want to hear my cancer bullshit, and I can’t blame them for it. It’s awkward and uncomfortable and people never know how to respond. Here are some things I have learned through my experience with chronic illness that might be helpful in dealing with me or others you know in a similar situation: I miss being fun and having fun. No one hates the fact that I’m a Debbie Downer more than me. If you’re my friend, please know this and try to hang out with me anyway. I will try my best to live in the moment and put all of my shit aside while I’m with you. I’m afraid of friend rejection. I probably don’t reach out to you as much as I used to, but it doesn’t mean that I don’t miss you. Chances are, I’m sitting at home being bored and watching Netflix and would LOVE your company. If you are down for a chill night please hit me up! Company is usually welcome and appreciated. Sometimes I just want you to listen and agree with me. I know that human nature is to try and comfort someone, but most of the time there isn’t anything to say or do to make my situation any better. I don’t want empty platitudes or to hear about how I should be happy that I felt sort of ok 1 day in the past 2 weeks. Sometimes I just want you to agree and and say, “you’re right, that does fucking suck!” and leave it at that. I don’t compare everything tell me to my cancer. Don’t think that you can’t talk to me about things in your life because I have my own shit. Please don’t tell me that you shouldn’t be complaining about your life because mine is worse. I hate that, I get still get annoyed about all kinds of stuff the same as someone else. I’m your friend, I want to hear about your life. Plus it’s good for me to be able to get out of my own bullshit and think about others. Thanks for listening, Liver. Love and kisses, Robin [...]
February 21, 2015Dearest Liver, I was given a small break from my chemo last week. Despite my two neupogen shots, my blood counts were too low for chemo. I also suspect that the addition of the neuropathy helped my case for a break. I have been feeling like I never fully bounce back lately as well. The exhaustion is overwhelming. Granted I probably don’t sleep enough hours, but having to be at work at 7:30 am doesn’t make it easy. Instead of chemo I had my 3 cycle CT and found out that the tumor in you was a little smaller again! Not the 50% decrease that I had the last time, but still, smaller is smaller! Now I’m waiting to see what my doc wants to do next time. I’m being tested for a new study and there are some other options on the table. I have a feeling I’ll be back on chemo for a little bit next week, but at least I got a tiny break. I took 2 days off to hangout with my parents who were visiting (the first days off I’ve taken since last July!) and then was rewarded with 2 extra weeks off of chemo, which gave me a nice weekend with my girls from the east coast. I thought I’d be sick from chemo and that we’d be stuck in my apartment watching cheesy dance movies all weekend, but we were able to spend time outside in the nice weather. Here are a few photos of my nice mini break! Love and kisses, Robin [...]
February 10, 2015Dearest Liver, Why is it that if there is a tiny chance that someone, somewhere will get a side effect from a drug it’s going to end up being me? Not only do I have zombie jaw that is supposed to be an uncommon side effect from Xgeva, but now I seem to be developing neuropathy from my current chemos. According to the interwebs, which everyone knows is true, 2% of cancer patients treated with Xgeva developed jaw necrosis. And according to my NP, who I love and trust, neuropathy is possible, but has a much lower chance with the drug I’m on than one of the taxanes, like the Taxol I had the first time around that did cause neuropathy. I’m wondering if I’m more likely to get it this time around since I’ve had it before or if I’m just lucky, but either way, I’m over it! I’m also losing my ability to bounce back after chemo. I’m told that this happens when you’ve been on it for a while and that it’s normal, but it sucks! I don’t want to play anymore. Tomorrow starts treatment 2 of cycle 6, which is 6 months of hard chemo. I’m also approaching my 2 year cancerversary of metastatic disease and I’m tired. Can’t I ever have a drug that doesn’t have bad side effects and doesn’t make me feel like I got hit by a truck? Right now I’m thinking the answer is no, but I have faith in my team, they’ll come up with something… let’s just hope they come up with something soon! Love and kisses, Robin [...]
February 10, 2015Dearest Liver, You’ve probably noticed me complaining about my Neupogen shots (or Skele-gro as I like to think of it), but I don’t know if I’ve ever explained it. The chemotherapy treatments that I get have the known side effect of lowering white blood counts. White blood cells are what help fight off infections in your body, and neutrophils, a type of white blood cells, fight infection by destroying harmful bacteria in the body. When your neutrophils get too low, your chances of getting an infection become a lot higher. If they become too low you can even be at risk for an infection from eating fresh fruit or veggies or from even being around fresh cut flowers. In order to try and avoid all of that mess and to make sure that my neutrophils are high enough for my next treatment, I get shots of Neupogen. Neupogen is used to stimulate the growth of bone marrow, the place where your white blood cells and neutrophils are made. This hurts like hell. Bones that I didn’t even know existed in me start to hurt. Hence my name for it: Skele-gro. In Harry Potter and the Chamber of Secrets, Harry breaks his arm and instead of having the nurse fix it, an idiot wizard removes all of his bones. When he’s finally taken to the infirmary, the nurse, Madame Pomfrey, tells Harry that he’s in for a rough night because “re-growing bones is a nasty business.” I know I’m a Harry Potter nerd, but every time I get a shot of Neupogen I think of that scene. And unfortunately she’s right, re-growing bones (or bone marrow in my case) IS nasty business! Bone pain is the worst pain ever. Love and kisses, Robin p.s. If I can find a clip of this from the movie I’ll share it with you! [...]
January 17, 2015Dearest Liver, I have a few topics that I’ve been wanting to discuss with you, but today I read an article about an org called P.Ink (http://p-ink.org/) that inspired me to talk about my tattoos as a weird/unconventional mental healing method. P.Ink helps breast cancer survivors find tattoo artists and encourages them to take back control of their scars and bodies. Most of the women in the article seemed to be tattooing over mastectomy scars or getting something creative tattooed instead of the “traditional” fake nipples. I really like the concept and mission of the org. While I’ve never used a tattoo to cover a physical scar, I’m definitely using them to help heal my emotional ones. When I was first diagnosed with metastatic disease almost 2 years ago my brain went into shutdown mode. As I slowly began to comprehend that everything “normal” in my life was about to be replaced with cancer treatment, sickness, worry, and unknowns I knew I needed to do something to find a sense of control. I decided to take the logo I designed 7 years before as a celebration of my “cancer free” life and use it as a badge of courage and strength to protect me from what was to come. And so I got Fuck Cancer tattooed to my ribcage. It’s probably not my mom’s favorite of my tattoos, but it makes me happy when I see it! Over the past 2 years I’ve tried out a bunch of different drugs with different levels of success. I’m told that it’s just how metastatic cancer treatment goes. You use a drug until it stops working and then you find another one that does. When I was switched from oral drugs back to IV drugs it was a much harder hit emotionally. I didn’t think I would ever be back in an infusion center and didn’t like it. Somehow swallowing pills felt less like real chemo than infusions. Plus despite all of the tattoos (which are totally different), needles and IVs freak me out. My doctors discussed having my port put back in, and while I knew it would be much easier for me, I still wasn’t happy about it. My response: I tattooed a keyhole around my old port scar. I figured if I had to have a port, I might as well make it fun to use. Now every time the nurses plug me in they have to go through the keyhole. I’ve been told by a few nurses that it’s the most fun port they’ve ever accessed. (The IR surgeon who had to go in through the old scar wasn’t as amused by me, but that’s another story for another day.) For me tattoos let me take control and also help me make bad situations a little more fun. I guess I’ll have to wait to see what the next one will be… Love and kisses, Robin [...]
December 19, 2014Dearest Liver, I’m not having such a great day today. My bones hurt from my neupogen shot yesterday, I’m exhausted, and just generally feeling stressed out and a little sad today. Sometimes I have these sorts of days. My general stance on this is to allow myself to wallow in whatever I’m feeling for no more than 24 hrs and then I move on. I don’t know if this is the healthiest way to deal with things or not, but it has gotten me through the last year and a half of this cancer BS pretty well, so I think it’s working for me. Today I’m going to try and drag myself out of my funk and think about the little things in life that make me happy. Like the fact that my tumors in you are down by 50%! FIVE ZERO! That’s pretty awesome. And I got to celebrate this on Monday with some of the best UCSF staff ever! After 6 months of not being allowed to have any alcohol at all, I was rewarded by being taken out for a cucumber gimlet at Bourbon and Branch. It was the perfect cocktail choice and the one we have been talking about for months. To Sheila and Caroline who met me out for the drink, you are both rock stars! Not only for your awesome and amazing care in the clinic, but for telling me that this little victory was important enough to celebrate. As my good friend Chris says, it made my heart smile. And thank you, dearest liver, for processing the alcohol in that drink and not even showing the tiniest sign of struggle the next day in my blood work. I will cherish that drink and the fun night out and will try to look back at this post and remember how happy it made me the next time you do something messed up! 😉 Love and kisses, Robin [...]
November 25, 2014Dearest Liver, Why is that that the good news always comes with the bad? My tumor markers are even lower than they were at my last post (163!) BUT my jaw is a mess. When I was first diagnosed with metastatic cancer my bones were the biggest issue. I was put on a shot called xgeva to strengthen my bones and help kill my bone mets, but was told to go to the dentist and watch out for osteonecrosis of the jaw. Don’t google it unless you want to be traumatized by the pictures for life, but it basically causes your jaw bones to die and to look like you’re an extra from the Walking Dead. Instead, I like to call it zombie jaw. Six months ago when I started having jaw pain, my docs took me off xgeva and scanned the hell out of my jaw trying to see what was wrong with it. Of course we didn’t find anything that proved that I had zombie jaw, but after some coaxing on my end they treated me with antibiotics and the pain went away. A few chemo treatments ago I started having jaw pain with every post shot of neupogen. We’ve been going back and forth trying to figure out how to manage the pain while I have been fighting with my insurance company trying to get them to cover me seeing the special oral surgeon. (You know it’s bad when I’m electing to see another doctor.) Then last night, as the pain in my face was becoming something I couldn’t tolerate anymore, I went into the bathroom and looked in the mirror. I saw this tiny spot of what looked like bone sticking out in the middle of my gums! I started freaking out, and cursing myself for not looking earlier while my dad was still awake, and emailed my doctor. Side note: I have to say, I LOVE my oncologist! She is so smart and busy with research and travel/speaking, yet somehow every single time I have a freakout she answers my emails right away. I emailed her at midnight or so and within maybe 5-10 min my phone dinged with a new email and it was doc responding to me. I don’t know if I time my meltdowns well or she’s always attached to her email, but either way, Dr. Rugo, you are my hero! Always coming through with the middle of the night emails that calm me down. Then I had the extreme pleasure of seeing 4 dentists this morning who all x-rayed and examined me and never gave me a solid diagnosis. Long story short, yes, there is in fact a hole in my gum, dear liver… And yes, I’m 99% sure even though the oral surgeon won’t say it, I DO have zombie jaw. So please excuse me if I have a weird craving for brains and please know that even though I’m blaming this one on the bone mets, and not you, I’m still pissed off. Love and kisses, Robin [...]
November 21, 2014Dearest Liver, The last two treatments haven’t been so bad to me, so I wanted to share these good results with you! Your functions have all been in a normal range for 2 treatments in a row now. My doctor and nurse practitioners are all very excited about your progress and I find it easier to put up with feeling sort of sick when I can see good results! It’s only 2 days post chemo and it’s way past my bedtime, so I’m going to keep this short and just share my results in the charts that MyChart provides me! Either way, keep up the good work liver! You’re making mama proud! AND Sheila promised me that we can schedule my half a drink to celebrate. p.s. my tumor markers have been steadily falling as well, so I’m throwing that chart in for good measure as well. Love and kisses, Robin [...]
October 13, 2014Dearest Liver, Thanks to you I had the worst week/weekend. I had a large dose of chemo and a stupid flu shot on Tuesday, the first of 2 Neupogen shots on Wed, a fever resulting in a 7 hr stay in the worst ER ever Thursday night into Friday morning, and then my second shot of Neupogen on Friday.  So most of my week/weekend was filled with me feeling sick, flu-like, weak, tired, painful, and nauseous. This weekend was supposed to be all about my good friends Katie and Scott and their awesome wedding festivities. I missed out on the bridal nail party on Thursday (you should know better than to mess with me and my nail time) and almost didn’t make it to the wedding on Sat. I luckily managed to suck it up, medicate the hell out of myself and still make it to their beautiful wedding, but I wasn’t at my best. I had to toast them on sparkling cider instead of champagne (which isn’t even close), barely got to enjoy the food since I was queasy and only got to dance a little bit, even though I wanted to be running around having a great time like everyone else. I am very happy that I was still able to be there and watch everything, but I’m calling bullshit. Bullshit on you, on this whole fucking situation, and every drop of poison that gets pumped into my veins to try to cure you. You made me drink water at a fucking winery. For that alone I hope you rot in hell. Sorry for my lack of positivity tonight, but honestly, FUCK YOU LIVER! I’m over you and this cancer bullshit. Fuck you very much, Robin Pictures from the wedding: [...]
October 8, 2014Dearest Liver, I learned a new word while at chemo today: fiddly bits. My new favorite chemo nurse, Caroline, said it to me in passing and I can’t stop trying to use it in sentences. She wasn’t even my chemo nurse today, but I still talk to her because she cracks me up. It’s a really fun word, I’m going to try and make it part of my vocabulary. I was sitting across from a really nice lady who was in her second AC treatment (AC-T are types of chemo that are commonly used for breast cancer: A is Adriamycin, C is Cytoxan, T is for Taxol) and I found myself doing what I always do, giving pointers, little tricks to avoid side effects, and talking to her about pre-screening for lymphedema. It reminded me that the main reason I wanted to start a blog was to share information. So here are some helpful hints for patients receiving AC-T. (There will be many posts to come about lymphedema.) Usually patients getting AC-T will lose their hair. Mine fell out the day after my second treatment of AC 9 years ago. When it does fall out your head tends to hurt from the hair follicles being inflamed. Rub Preparation H on your scalp. It makes the inflammation goes down and soothes your head. In my opinion, the thought of losing my hair was worse than actually losing it. I bought a crazy expensive wig and then never wanted to wear it after I buzzed my hair and the rest of it fell out. Buzz cutting it was also super helpful for me as it made me stop seeing clumps of hair fall out. When they push the Adriamycin, try to suck or chew on ice cubes. It’s supposed to help reduce the mouth sores. Use a very gentle cream like Jason’s vitamin E cream when your skin gets red and painful. It’s cooling and gentle and will help when even your soft sheets seem to hurt when you touch them. (I think that aloe would probably work the same way.) SMOKE/EAT/CONSUME POT! It’s honestly the best thing I ever did. There is this really hard to explain side effect that makes you feel uncomfortable in your own skin. Between the chemos and the billion drugs they give you to try and avoid side effects, you will feel disgusting and full of chemicals. This is where pot comes into play! It’s natural and will actually make you feel more normal again. Especially now with all of the medical marijuana out there. Try something super high in CBD and lower in THC. It will give you the body effects or feeling more comfortable, less painful and even hungry without adding any psychotropic or typical “stoned” cloudy head symptoms. You already have enough of that! Try to stay away from things with lots of scent. For some reason chemo makes your sense of smell stronger and even the smells of things you like can make you sick. My chemo brain is about to set in, so that’s all I have for today. I’ll add more points as I think of them! Love and kisses, Robin [...]
October 3, 2014Dearest Liver, You haven’t been so nice to me lately so I thought this blog might give us a chance to get to know each other a little better. When I was first diagnosed with breast cancer in 2005, you weren’t even a thought on my mind. It was all about chemo, radiation, mastectomies, reconstruction, hormones and eventually lymphedema. Did you get jealous of all of the attention given to other areas of my body? I thought that I was keeping you entertained with my casual love affair with wine and gin, but I guess it wasn’t enough for you. So here we are… 1.5 years after being diagnosed with metastatic cancer and you’re the star of the show. My bone mets have been kept pretty well under control with the various study drugs and chemo, but you are still a pain in my ass. My good friend tells me that I should think of my metastatic cancer like having a child that I never wanted, but am forced to take care of for the rest of my life anyway. And then he named you Charona. (Like My Sharona, only spelled with a C.) Maybe the reference to being an unwanted child makes you upset, and for that I am truly sorry. But I have to admit, I liked you SOOOO much better when you were just processing my gin… Love and kisses, Robin P.S. If you get bored and want to hear where your name came from: [...]

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