Liz Acosta's Cancer Treatment

$23,177 of $30k goal

Raised by 306 people in 11 months
Anne Vetto
on behalf of Elizabeth Acosta
 SAN FRANCISCO, CA
On February 3, 2016, our brilliant, beautiful friend Liz was diagnosed with breast cancer. It is metaplastic, a rare and aggressive form, and, at only 31 years old, she has a lot of living left to do. This diagnosis effects five months of rigorous and invasive treatment and five years of vigilant monitoring. Of course, she is handling all of this in true Liz fashion: poised, resilient, optimistic and glamorous. Let's help make this just another one of the battles in her life that she wins.

Of particular importance is expensive treatment cost that is not covered by her insurance (e.g. certain MRIs). Another concern is to buffer against any complications that may arise. We want to alleviate financial stressors so Liz can focus on healing and getting back to her job being a software engineer, back to writing her poignant female-protagonist Westerns, back to the gym to outlift bros, back to being a lovely hostess of parties, and back to the life she has worked hard for and deserves. Liz is undergoing chemotherapy and surgery, and she is keeping her hair during this process via cold caps and special showerhead accessories to strictly regulate temperature; these costs add up, and, in a world where femme identities are denied coverage for deemed medically unnecessary equipment, where hair is inherently political and precious, where there is not yet a cure for a disease threatening a young woman's appearance and livelihood, we want to make sure the last thing Liz is worried about during this process is money.

Any amount donated will be greatly appreciated, and will be supporting someone who is a constant source of strength and support for her loved ones.  Instead of focusing on herself, Liz is concerned that her friends stay healthy during this time, so if you are unable to donate monetarily, in lieu of money we would appreciate knowing more people are trying to keep their health a priority and, if applicable, doing monthly breast checks. Every dollar helps and any words of love, support, encouragement and solidarity are always welcome.

We thank you for your generosity.  Keeping our theme cohesive with Liz's "Kittens Against Cancer" Facebook group, we will be sending personalized kitten-themed Thank You's and original artwork as rewards to our donors.  <3
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Update 8
Posted by Anne Vetto
1 month ago
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Hi friends -- Liz here.

Well hey -- we made it to 2017. I hesitate to assess an ultimately arbitrary expanse of time as wholly one thing, but in this case 2016 was literally the worst. The highs were really high and the lows ... well, I think death is probably the only thing lower. Maybe next year will be consistently boring, however, I've got a feeling that's not going to happen.

Regardless -- look, we're here! We made it! And I'm sure glad you did. I hope you had a gorgeous NYE -- I certainly did. NYE is one of my favorite holidays. Besides my birthday, of course, which is in nine days!

I'd like to update you on how I've been spending the money you've graciously donated. Most recently, I decided to pay out of pocket for a particular blood test. As I understand it, the Circulating Tumor Cell test returns a count of how many tumor cells are found within a sample. That's very simplified, but you get the picture. This test is normally reserved for breast cancer patients with metastatic disease, but I wanted it. The thing about this blood test -- and honestly, about all this cancer testing and treatment -- is that there are no answers. There are statistics and patterns and correlations, but nothing direct because one might always be the anomaly. We hear it all the time -- folks given mere months to live who end up living their whole lives. Of course, that coin has two sides, but let's not talk about it right now.

In other words, I paid out of pocket for this test which really won't make any contribution to my treatment, but let me tell you why this is so important to me.

Fighting cancer is like fighting a shadow. I didn't feel sick -- didn't feel like anything was wrong apart from a weird hard lump in my breast -- until I started treatment. Treatment felt like cancer, but it wasn't the cancer. I mostly battled side effects, but the cancer itself? I have never seen it or known it besides an ominous mark on my imaging. So I want a count -- even a vague one -- of how many of my enemy might still be in my blood. It was about exerting some sense of control. The number has no meaning other than a number -- the tidiest, most basic thing. The number of pairs of shoes I own, the number of jobs I've held, the number of days since I discovered the lump (367 -- it was the day after New Year's), the number of tumor cells which may or may not morph into a death sentence somewhere else in my body. Controlled with a number, at least. Thank you for helping me give myself this gift.

I've been seeing a personal trainer with your help. Chemo and surgery ravaged my muscle, endurance, and energy -- my body felt foreign and not trustworthy to me. I was lost. I've started seeing a personal trainer who is helping me rebuild the strength I lost and rebuild my confidence in my new body. With her help, I feel I've been able to achieve a peak level of fitness which I believe is helping stave off the most common side effects of my current chemo. So far so good!

Most important to note is that with your help, I was able to cover my medical expenses last year WITHOUT derailing my personal financial goals, one of which was to entirely pay off my student loans. Guess who's starting 2017 free of student loan payments? Me! This has been one of the biggest financial burdens I struggled with -- and my loan situation wasn't as bad as most folks'! If I wanted to pay them off quickly accruing as little interest as possible, I had to pay double my minimums every month. With a lot of luck, a lot of hard work, and a lot of the generosity of folks like you I am now free of student loan debt. Now I can save, invest, and make more concrete plans for the future. I could not have done this without you.

That's when you know you're feeling better: When you start envisioning the future again. For a long time, I could see the edge of my future -- a flat horizon with the sun setting quickly on it. Now it seems a little farther away, hidden, perhaps, behind a forest. I am still deeply aware of my constant movement forward, maybe at a pace quicker than most folks'. The thing about my cancer -- my triple negative breast cancer -- is I can get three years past this, the shadow looming over me will start to break apart, and if I can get five years past this, the shadow will be gone entirely. I wan to fast forward time, but I also want to savor every moment!

Especially my birthday. I love birthdays! I will be turning thirty-two and I will have lived through an entire year of cancer treatment. (And yikes! -- all the other intense stuff that happened!)

Here's to this year, and the year after that, and the year after that. I do so hope there will be many. Thank you for everything.

Happy New Year!
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Update 7
Posted by Anne Vetto
2 months ago
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Hi everyone -- Liz here.

So tomorrow is Thanksgiving. Today I decided to leave the office early so I could get some Pokemon cards for my nephews -- whom I am meeting for the first time tomorrow. I am so excited. I am planning on waking up early and going for a run, then I am picking up one of my best friends from college from the airport, and then we will drive down to the farm where my partner lives and works, and we will have a ham dinner. On Saturday, I am hosting a Friendsgiving with my chosen family, and it is certain to be a lot of fun.

The holidays can be a very complicated time for a lot of people. There is pressure to conform to traditional ideas of what a family looks like and how a family behaves. Some of us have challenging relationships with our given families, and some of us -- for whatever reasons -- have no relationships at all with our given families. I want to offer you some comfort and give you some permission: It is totally okay if your holidays don't look like what everyone expects them to. I hear you and I see you, and I am holding space for you. I hope you have a good holiday weekend -- however you choose to spend it -- and please know that I am thinking of you.

Tomorrow is a holiday for other reasons -- it is my first week OFF of my new chemotherapy treatment. Thanks to you and the trips you helped me make to some of the best cancer hospitals in the US, I was able to make a confident decision about my followup course of treatment: I am currently on a new chemotherapy treatment and have set the wheels in motion for participation in a trial study.

The drug I am taking right now is called Xeloda (generic name capecitabine), and it is an oral chemotherapy. No more needles! (Well, apart from the blood tests I have to do every two weeks.) I take three pills in the morning and three pills in the evening for fourteen days straight, then I rest for a week, and then I take the pills again. This is called a twenty-one day cycle, and I will have eight cycles total. That means treatment won't be done until April, then I will get to rest for two months, and then I will have my final big reconstruction surgery. In other words -- I've got six more months of this.

Tonight is the last night of my "on" weeks before I get to take a week off. So far, the side effects have been unnoticeable. Okay, not totally unnoticeable. I have been very, very fatigued, and I have to be very, very careful about how I spend my limited energy reserves. Since the effects of chemo are cumulative, I know that things might very well get worse.

So despite the fatigue, I am trying to have the best holidays ever before the chemo catches up with me. Last weekend, my partner took me to Tahoe, where I got to experience my first snow! Growing up in Southern California, snow was just never a thing I encountered. As you can imagine, I was pretty apprehensive about my first snow and I didn't know if I'd like it ... but it was so magical! We built a snow person and had a snow ball fight.

Since I started making my own traditions, I've come to really love the holidays. But I can also hold in elegant tension all the complicated things that surround the holidays -- especially this year.

I -- like many others -- am deeply concerned about what the recent election spells out for the future. As you may or may not know, I am half Mexican and half Cuban -- my parents are both immigrants -- and it is very frightening that a successful presidential campaign was built on a platform of outright hatred for people like me. As a sexual assault survivor, it is very upsetting that a man who has been recorded saying demeaning things about women was elected leader of the country my parents fought so hard to come to. As a cancer patient -- whose illness is considered a pre-existing condition that could at one time bar me from getting the medical insurance I now need -- I am worried that my continued care may be in jeopardy. As a woman, I am simply, deeply heartbroken.

And this is just one of the many events complicating the holidays. In North Dakota, brave people are desperately trying to protect our water, and in Flint, Michigan, residents still can't get clean water to drink. I think of the field hands who work alongside my partner on the farm, and I know the work is back breaking, long, and taken for granted.

It is complicated and contradictory. I understand all these things are hard to hold at once, and they can feel deeply uncomfortable. And that's okay. Nothing is black and white, and life -- ultimately -- is very short. I invite you to sit with the discomfort this holiday season -- to eat the turkey, to spend money on Black Friday, but to also remind that family member what their vote really means to some people, to think of the indigenous men and women fighting for their right to clean water -- and understand that this complexity is the very essence of being human.

And blessed is the experience of being human, right? I sit with a lot of my own discomfort, complexity, and contradiction. There is a feeling of desperation surrounding this holiday season for me -- like I desperately want it to be the best holidays ever. This is because in the loneliest corners of my heart, there lurks the very real possibility this may be the last, or at least one of few holiday seasons I have left. I am not giving up the fight, but I have come to a place of acceptance. I am no longer afraid, but I am profoundly aware of the clock ticking, and I don't know when that clock may suddenly cease to tell time.

There are many, many things that trouble my mind right now: Having to get up and make something to eat so I may take my chemo, whether or not my friends will be safe in this upcoming political climate, and my own complicity in everything I find unjust.

But there are many, many things I am grateful for in this moment: My nephews' Pokemon cards wrapped up and ready to be gifted to them, the food I bought for Saturday's Friendsgiving, my cozy, clean apartment, and looking forward to pulling up to the farm tomorrow and melting into my partner's embrace in a kitchen warmed with the aroma of good food cooking.

It is because of you that I am able to find this place of peace. No, it's not fair for a woman to get a cancer like this when she was just beginning to get her life together, and yes, I am still angry about it. And yet, I have a new clarity of perspective that allows me to savor this moment -- as I express my deep gratitude to you -- even as the world feels like it's falling down around me.

Like I said -- life is short. And thank you for helping me make it a beautiful life, however long it ends up being.
My first snow!
Ugh, so many pills ...
Trying to maintain a sense of humor
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Update 6
Posted by Anne Vetto
4 months ago
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Liz here! Hi from the sky!

More specifically, hello from an airplane making its way from Houston to Oakland.

I'm not sure where we last left off, but I think I had told you about how the residual disease they found at the time of surgery was determined to have a cellularity of 90%, indicating that it was still very much an active tumor. This has put me in the position of trying to figure out what to do next when it comes to treating an illness for which there is no standard protocol. I really wish I could go back to the days when the hardest decisions I had to make were which color to dye my hair or whether I should order a pizza or tacos for dinner on a Friday night.

Which is not to say that life was easier for pre-cancer Liz -- she still had her own very real struggles -- but she also didn't know how good she had it, and there's no way she could have known until she became Liz With Cancer. It is not an exaggeration to say I have experienced a loss of innocence or naïveté, and in the place of that loss there is profound insight and a startling new perspective. The little things I used to fret about recede into the distance, and there is no past to regret nor a future to get too caught up in. I am very much here in the present.

And presently I am on an airplane. What am I doing on this airplane! Well, I am on my way home from Houston, TX, where I had an appointment with a doctor at MD Anderson -- the top rated cancer hospital in the United States. A couple of weeks before, I was in New York getting yet another opinion from a doctor at Memorial Sloan Kettering -- the second top rated cancer hospital in the US. With so very little information out there, and every decision one of life or death, I wanted to get as many opinions as possible so I could feel confident pursuing this next part of my journey.

I struggled to give myself permission to make these trips. It seemed indulgent to chase medical opinions across the United States, and I can't deny the privilege that afforded me the chance to do this. Many people are not as lucky. But what good am I if I allow my voice to be silenced prematurely? How does that help the causes I believe so passionately in? So I bought the plane tickets, and I have all of you to thank for the opportunity to do everything I can to live through this.

My trip to New York and my trip to Houston were extremely useful, and I feel I can move forward with confidence. In New York I learned of a promising clinical trial wherein triple negative breast cancer patients are being treated with the same anti-androgen therapy regimen patients with prostate cancer have been receiving for years. You see, most breast cancers present female hormone receptors, and part of keeping the cancer at bay involves therapies that block these hormones. As a triple negative breast cancer, I don't have these receptors, but I might just have androgen receptors. To simplify things, you can think of androgens as "male hormones."

I also got more information on the study on which my oncologist in San Francisco is making her recommendation for the oral chemotherapy capecitabine. In an exclusively Asian population of triple negative breast cancer patients who received capecitabine as an adjuvant chemo, the medication significantly and positively impacted disease free survival rates. The catch is we don't know how this drug will affect me personally.

MD Anderson conducted their own pathological study of the slides created from my tissue after surgery, and discovered that while yes, my tumor presents cells with metaplastic characteristics, those cells are in a minority. This means that my cancer is mostly characteristic of triple negative breast cancer -- in other words, it is a slightly better prognosis, but I am far from out of the woods yet.

There still really is no standard of treatment for triple negative breast cancer, and of all breast cancers, it accounts for about 20%. It is still rare. It is still aggressive. It still has a tendency to recur much sooner and more deadly, and there are still no good answers or explanations for me. Which means that I am not only not out of the woods yet, I am standing here in the dark, with a faded roadmap, and only one dim star in the sky to guide me. The dark shapes before me could just be trees, or they could be hiding something sinister. I won't know until I am out on the other side -- and the other side of this won't come for another five years. So I have to grope my way through the shadows, hoping I don't lose my footing or take the wrong path.

My decision isn't final yet, but I have a clear idea of what I want to do going forward. I want to take my chances with the capecitabine, and I also want to take my chances with hormone therapy.

Despite the context of my trips, I managed to do some things I have always wanted to do. I visited the Natural History Museum in New York and took a walk across Central Park. I ate a New York bagel and a New York slice of pizza. In Texas, I rented a car and drove to Austin, where I saw the fossil of the largest flying creature ever found, ate a delicious chopped brisket sandwich, and got a feel for the city's queer culture. In the parallel universe where I don't have cancer, I might still be waiting for "the right time" to buy the plane tickets for these adventures, but in this universe -- the one where I have cancer -- I didn't hesitate at all to book my flights.

And maybe -- just maybe -- this is how you really beat cancer. You keep on living. You live harder than you ever lived before. The reality that my life may not be as long as I thought it would looms over my thoughts. It is maybe with a little desperation that I have found the courage to really start doing exactly what I want to do. Sometimes when your back is up against the wall, you have no choice but to go for broke.

Thank you for helping me live the best life I have ever lived. I am hopeful that my future will be long and bright, but just in case it isn't ... you'll have had a hand in helping me go out with a bright, fearless bang.
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Update 5
Posted by Anne Vetto
5 months ago
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Hi everyone, it's me -- Liz.

I've been waiting to update you on how my surgery went. Well, long story short, I just booked a flight to Houston, TX so I can get a second opinion at a renowned cancer hospital called MD Anderson.

Long story long ...

Surgery went really well. Of course, I insisted on doing it my way, which means I asked for the celebrity treatment for my hospital entrance. Which means my friends brought me and my partner plastic tiaras to walk around the surgery floor in. Which means I apparently came to insisting on ripping my dressings and my gown off. (Kindly, my friends and family prevented me from doing so, and -- mercifully -- I remember none of this.) Apart from my general well-being, the breast surgeon was optimistic about my outlook: My sentinel lymph nodes were too small for a frozen biopsy and the tumor was so reduced by the neo-adjuvant chemo that she almost couldn't find it. In her opinion, no further treatment was necessary.

However, my oncologist wanted a pathology report of her own, and it was a long wait between having the sides sent over from one hospital to another and examined. In the meantime, I took a month off from work and watched nearly every episode of "Real Housewives of Atlanta." My friends took extra good care of me. I was even able to laugh about the utterly horrifying and disgusting process of my daily drain cleanings. (If you don't know what this is, it's better you remain blissfully ignorant!) My plastic surgeon was pleased with the results, and to be honest, I am pretty jazzed about the "upgrade" as well.

I was hoping and praying this was all behind me.

Not so fast though. My oncologist is concerned about the high cellularity of the tumor that was removed from my breast. A high cellularity means that though the tumor had shrunk considerably, it was still very much an active tumor. Which means that some of the cancer cells could have crept into my bloodstream, and might still be circulating throughout my body.

It is easy for me to forget I have cancer sometimes. I kept my hair. (THANKS TO YOU!) I managed chemotherapy with relatively few side effects. I carried on with my job and apart from an occasional queasy stomach and some real legit fatigue, I felt fine. I fell in love, I deepened my friendships, I wrote, I went for runs, I deployed code, I celebrated life.

But there are times when my cancer is very very real. And the only thing I can do is ask, "Why me?" Why such a rare and aggressive cancer? Why a cancer so atypical that no one really knows how to treat it? Why a cancer with a higher recurrence rate? Why a cancer with a lower survival rate? Why a cancer that if it does recur, is likely to show up somewhere deadly like my lungs, or bones, or brain?

Why me?

I try not to dwell too much on it. I try to keep moving forward. One thing I love about being a software developer is the opportunity to flex my sense tenacity and perseverance. I keep trying. I get back up and I try to take a different approach.

My oncologist here in San Francisco is recommending four and half months of an oral chemotherapy that has shown to increase the overall survival rate of folks with triple negative breast cancers. Now, there's no word on how it affects metaplastic breast cancer, but she's hoping it will do the trick of cleaning out any remaining cancer cells. It's for insurance.

But let me confess something: I am scared. Without the tumor, we won't know if the chemo is working.

So I have a trip to Houston, TX planned. And I am trying to get an appointment at Sloan Kettering in New York. None of this is cheap, but what is the price of some sort of answer when faced with something so uncertain and so sinister?

When I was younger, there were many times life did not seem worth it. Now, faced with my mortality, I am so desperate to live. To live for last minute tickets to see Beyonce, to live for those rare days when the bay area actually has nice weather and you spend them among friends, to live for motorcycle rides to Santa Cruz for donuts after a detective calls to tell you that you've been the victim of identity theft (yes, this happened recently!), to live for strange conversations with a bus driver after your vehicles have collided (yes, this also happened recently!), to live for the smile on your co-workers' faces when you return to the office, to live for love, and for beauty, and a good cup of coffee.

I have never been so scared and so determined in my life. I'm still here -- I'm still here and I'm still fighting. And I have you to thank for that.

Thank you for your continued support and generosity. It looks like I might have another six months of treatment ahead of me. (Chemo and then another surgery to complete my breast reconstruction.) It will be a crummy way to spend the holidays and my thirty-second birthday ... but I guess it will make next year's celebrations that much more wonderful.
My hospital entrance.
Look! A ghost Pokemon in my drains!
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$23,177 of $30k goal

Raised by 306 people in 11 months
Created February 26, 2016
Anne Vetto  
on behalf of Elizabeth Acosta
VR
$100
Veronica Ray
19 days ago
$50
Liana Maeby
1 month ago
ES
$25
Eleanor Stribling
1 month ago
$20
Anonymous
2 months ago
MC
$35
Millie Chan
3 months ago

Sending lots of love to you!

HD
$50
Hayley Denbraver
3 months ago

2016 has been really bleak, but I think there is great things ahead for you.

$250
Leigh Honeywell
3 months ago

The world is better with a Liz in it ♥

MM
$250
Miriam Mangini
4 months ago
CE
$100
Coraline Ehmke
4 months ago
AS
$500
Alva Snædís
4 months ago
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