Dena's Health Status FAQs

photo taken a few hours after chemo, I am clearly fine although I lost the light and ended up with this grainy, polaroidesque image instead. I like it! 


I recently posted this picture to instagram and received a deluge of questions about what is going on with my health. I am so grateful to all of you for caring about me, and I wanted to do a good job of answering these questions for you. I also just got chemo so I'm a little tired. So, genius that I am, I decided to write this blog post. If I referred you to this post it is not because I don't want to talk to you - it's because I love you and I want to have detailed conversations with you that go beyond these boring and somewhat basic details about my "cancer status". And also maybe a little bit because answering the same questions over and over again just reminds me of things that I prefer to just accept and move on from.

DEEP BREATH. Here goes:

DENA, WHAT IS GOING ON? ARE YOU BACK ON CHEMO? WHY?

Unfortunately for me, I never stopped doing chemo. I have been getting infusions of chemotherapy every three weeks since about September of 2012.

BUT, WHY?

I have Stage IV Metastatic Breast Cancer, which means that the cancer metastasized to my bones. Most likely before I ever knew I had cancer in the first place. It didn't show up in my initial run of scans because we are talking about a few cells, not a massive tumor or block. By the time I found the 6cm lump in my right breast it was most likely already in/on it's way to my bones.

The metastasis was discovered during an unrelated ER trip in February of 2013. It showed up in the form of small lesions on my pelvic bone in a CT scan. It was confirmed by a bone scan the following day.

It is not cancer of the bone - it is breast cancer that has migrated to the bone. That means it doesn't interfere with bone function (bone marrow, blood production, that good stuff) but is more like an invasive species. It does make my bones more brittle which is why I can't do fun things like snowboard anymore.

Once the cancer was discovered to be metastatic a new treatment plan was developed. Chemotherapy is poison. Traditional chemotherapy - the kind most of us are familiar with and associate with cancer - is just poison that is injected into your body. Hence the horrific side effects (hair loss, digestive system issues, suppressed immune system, anemia/fatigue, etc. etc.) However, traditional chemos are designed to eradicate cancer. Once it metastasizes to the bone it can't be killed that way, and continuing with the aggressive systemic treatment and it's side effects can cause more damage than help over the long term. It's not just killing your hair follicles - it's causing damage to your bone marrow, heart, liver, lungs and other vital bodily processes. It's worth it to inflict that kind of damage short term if there is the possibility of completely curing the cancer (so jealous of you who fall in this category) but once breast cancer metastasizes to the bone it is uncurable. Doctor's don't 100% know why but the simplest answer is that the bone provides a measure of protection for the cancer cells from chemo. All you need is one cancer cell to survive the chemo and it will just grow back. The good news is that on the flip side, the bone also works in the reverse, making it harder for the cancer cells to migrate to other, more essential organs.

This is important to understand because it is the basis of every treatment I get. Keep cancer cells from migrating to other places. Women lived for decades with metastatic breast cancer to the bone, with less effective treatments than I am on now (mine are new!)

Lucky for me, I have hormonal breast cancer. Triple positive and over expressed for those who know what that means. I can control the growth and spread of my cancer by targeting and suppressing the hormones that make it grow.

We can target the hormones - since I don't need my breasts or other places that produce those hormones - with super aggressive poisons. We can also stop the production of some of the hormones, essentially starving out the cancer.

The cancer spreading to other parts of my body is where the danger lies, because breast cancer will interfere in what they call the "soft organs" the ones that produce life saving enzymes and regulate essential bodily functions.

So my treatment plan - which is working very well for me - targets the most expressed hormones in my tumor, that fuel that helps it to grow and spread. It involves a two pronged attack - suppressing my bodies production of estrogen through chemical menopause (a shot called Lupron) and also the receptors that get estrogen (a once a day pill called Anastrazole.) It also involves the use of a new category in the cancer space, what I prefer to call a targeted biological. This targeted biological (known as Kadcyla) contains a very strong dose of poison chemotherapy attached to a molecule that bonds with cells that produce a very specific human growth hormone called HER2NEU. Then they deliver that poison only to those cells (in theory.) That is why I still have my hair.

Unfortunately, since we are talking about cells, there is no way to get an exact dose that matches one to one with the cells in my body. So the rest of the poison floats around in my system causing "minimal" damage, which is to say that the level of toxicity will kill me more slowly than the cancer unchecked. The biggest side effects I have to deal with are neuropathy (nerve pain and damage in my hands and feet) plus nausea and fatigue. The Lupron is also not super fun as an injection, a painful deep muscle shot in my butt, which causes me to go into hyper accelerated menopause every 3 months. Beyond the pain of the injection, it has it's own set of side effects including hot flashes, mood swings and more fatigue. They amplify each other in a way that's not super fun for me, but nobody can tell because I control most of the side effects with anti-nausea medicine and acupuncture and frequent naps.

WHEN CAN YOU STOP?
Let me ask you a question: when can a diabetic stop using insulin? I can stop when they find a cure. There is currently no cure for metastatic breast cancer.

Let me put it another way. There is this thing inside of my body that is not working the way it's supposed to. I can keep it from killing me by controlling it with a medication that corrects for my bodies deficit, but it is a chronic, incurable medical condition. If I stop it's because it's stopped working, and that's bad.

I'M SORRY, HAVE YOU TRIED (INSERT ARTICLE/PODCAST FROM THE INTERNET)?
It's so hard, in this world of information we live in, to feel powerless. I get that. I have probably read that article already. Please spare me from rejecting your incredible thoughtful gift of concern and love, by not sending it. Every 3 months or so I sit down with my doctor and we review everything on the internet, every clinical trial, promising study, weird herbal cure, diet and anything else I can find during my own extensive network of data collecting. Then we discuss what might or might not work for me specifically, using the detailed knowledge he possesses as the head of oncology at a major hospital AND the person who sees my blood tests, every scan my body has ever had, and ME, the person who owns and controls the body. He's amazing and if he wasn't he wouldn't be my doctor. I feel confident I am not missing something revolutionary in my care.

DENA - YOU ARE SUCH AN AMAZING WARRIOR PRINCESS INSPIRATION
Thank you so much, please keep telling me this all the time - it keeps me alive. If I didn't respond to you personally with an overflowing well of gratitude and love in response, I am ashamed, but also sometimes my hands hurt from the neuropathy... and then I feel like it's too late to respond, and I get embarrassed, and anyways, the feeling is mutual.



4 comments:

  1. Thank you for this thorough update! I think of you a lot, though mostly because you post great stuff about your exciting, adventurous life that I live through vicariously, but it's good to know what's going on with your health and how you're managing it all. It looks like you are seizing every awesome thing and moment that comes your way and taking good care of yourself when you need to. You seriously are an inspirational warrior princess and I'm sending you a hug from afar!!!

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  2. I can't thank you enough for continuing to tell your story even when it is fucking hard. You really do bring joy and inspiration on the reg, and it means a lot.

    I'm 37 and about to start with Lupron/Anastrazole because Tamoxifen alone is not enough for triple-positive, even though I'm done with the bulk of treatment and (ostensibly) disease-free at this point (knock on wood, hate even saying this to someone with your dx, I am checking my bc stage privilege here)... I've been dreading it, fearing the shot, the side effects, the way it might make me age prematurely. I know overall prevention of recurrence is more important but the physical side effects of most treatment can be really demoralizing and I don't need to tell you that cancer just fucks with identity in a million small ways. Just knowing that you are on this treatment makes me feel less scared and alone and like I can still have glowy skin and hopefully to continue to look like myself. Your blog has helped me so much through the really hard stuff, Dena.

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    1. Thank you so much - you have no idea how much this means to me. This combo is not like, a warm hug and a glass of wine - but considering everything you've probably already been through, this will feel like a piece of cake. It's definitely nothing a good moisturizer and sephora fund can't help with, and you can def still have glowy skin, and a sex drive, and stay the same clothing size (all things I've heard before) I would say I look better NOW, post-lupron, because I knew what was about to happen to my body and so I dealt with it. "Self care" is a real and legitimate thing. Sending so much good energy your way. xoxoxo

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  3. Dena, I second Laura's comment. As a fellow young breast cancer patient, I have loved the way you have provided information on hair, skin, mastecomy and now living with bone mets. I love your witty and smart writing, and I love how this cancer stuff is part of your blog, the same way it is part of your life, but not the only focus. That alone is inspirational to people when they are first diagnosed - its a peek into the future where cancer hasn't taken over and obliterated everything. You can look fabulous, get married, be a writer and live with cancer. Thank god for drugs like Kadcyla. May the amazing people working on metastatic breast cancer continue to develop better and less toxic drugs (and may they also get more of the research dollars!).

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