Tired of being “sick”

I still can’t wrap my head around everything that I’ve adjusted to over the last 2 years. I went from being a normal 26 year old with a plan for a life to being a terminally ill cancer patient in the blink of an eye. I’ve kissed my breasts goodbye, my hair (goodbye and hello again), my ability to have children, I’ve watched my weight go up and down and up again, and experienced the highs and lows of my roller coaster life. And the whole time I’ve thought, “things will level off. They have to.”

What does that mean? Seems foolish to have ever had that thought as I sit trying to absorb and process the fact that my cancer is progressing today… my 6.7mm guy shot up to 9.9mm in 2 months. Leveling off is not a possibility in my experience of the disease (today). There is always something to adjust to, to process, to cope with, to accept. And frankly, I’m fucking TIRED of it. I’m tired of the hot flashes. I’m tired of the weight gain. I’m tired of the tearfulness.

I am working with an incredible integrative oncologist in Oregon (she came from Sloan Kettering) and she recommended I get off the wheel of failing 1st-2nd-3rd- (etc) line treatments and pursue something that has potential curative benefit. She connected me to an immunotherapy trial at the NIH/NCI in Bethesda, Maryland. This trial appears to have “cured” a young woman like me in 2016. Unfortunately, it was determined last week that my cancer is too small for their trial at this time. That’s kind of a mind fuck. So you want your cancer to grow?! Kinda.

I am going off of my treatment next month. To help grow my tumor for this trial, and to give myself a Fucking break. I am done playing cancer whack-a-mole. I want out. This immunotherapy trial gives me a shot at that. There are no guarantees. The only guarantee is that if I continue on toxic treatments that work for a little bit and then stop, I’ll be doing that until I’m dead, and statistics say I’m about halfway there. We know that this is what tends to happen with metastatic breast cancer, as this is standard of care practice. Getting a cancer that is most commonly diagnosed in 65 year old women in your 20’s is hardly standard. I require a different approach. And if it doesn’t work, it doesn’t work, and we will figure that out. But I know I can’t stay on these hormonal drugs much longer. If it’s about quality, not quantity, then I need to do what’s going to make me feel okay in the time I have left, however long that is.

This is a cranky and poorly written post because I have slept about 3 hours due to hot flashes and anxiety. Which is why I need a break….

Thank you for thoughts and prayers as always. 🙏🏻

“Slight progression”

Progress usually implies good things. But cancer has a way of tossing all aspects of life on its head. My latest scan showed 2 areas of millimeter growth. The rest of my “spots” were stable. I sort of had a feeling about this. Like I mentioned in my last post, I’ve been off my game. I haven’t been as great with diet, I’ve discontinued some herbs and supplements, and adjusting to Medication dose-adjustments and various other life changes…. but even if I was on my game, progression is always a possibility. And that really sucks. This lack of control is sickening and terrifying. I’m trying to keep calm and keep my head above water, and that is one hell of a challenge. I met with the NP on Thursday and she did not seem worried. We are continuing on the same treatment (ibrance and letrozole). Please keep me in your thoughts and prayers, I am so grateful for all of your support.

Scan day

Hello everyone. I’ve got scans (bone and ct) tomorrow (the ones I mentioned in my last post that I’m feeling pretty scared for) and would really appreciate any good thoughts, prayers, juju, and vibes sent my way. I appreciate you all more than you know. I will be sure to update once I receive the results on Thursday. We are hoping for stable or better! These 2-6mm spots have taken up residence in the wrong lady…

Xoxo

Amy

Questions and blabbing

“It’s that knife-edge of uncertainty where we come alive to our truest power.”

-lady from a documentary I watched a year ago and saved the quote. (Sorry, don’t know who she is…)

Do I agree with this? If I’m being honest, it really depends on the day. Things have felt turbulent lately, and I have been more anxious, more sensitive, and certainly more tearful than usual. I have my scan this month, following this last month and a half of dose reductions and scheduling adjustments of ibrance due to neutropenia. I have discontinued the Chinese herbs I was getting from a Doctor in California due to the inconvenience, terrible taste, and cost. I have been a little lax on certain things (like a decrease in the overall number of salads per week), and a little more diligent in other respects (like personal training 2 times a week, gym 5-6). I am quite nervous for this scan because of all of these shifts. And because I’m on so many supplements and drugs, it’s hard to pinpoint which of those things aid in keeping me alive, which are inconsequential and therefore not worth sticking to (and of course, which might be harmful, though fingers crossed that none of them are- with the exception of the pharmaceuticals and the laundry lists of side effects). This constant fear and uncertainty around my treatment, around my life, and around my death weighs heavy on my mind and on my heart. And yet I’m here. I’m living and I’m loving and I’m tremendously aware of the fragility of it all. Sometimes that awareness makes me anxious and sharp-tongued and angry and explosive and sad. And sometimes it makes me completely grateful for the entirety of it. The uncertainty is a gnawing ache in the center of my chest, the clenching in my abdomen, the tears in my eyes. But this is my life now, and I’d take grappling with uncertainty and fear with the support of loved ones any day over the alternative (not being here and therefore having nothing to be uncertain about). If someone had told me that I would be diagnosed with a cancer typically seen in 60 year old women at the age of 26, become terminal at 27, go through the hell of chemotherapy and come out alive with a thirst for meaning and life greater than ever before, I would have said, “No way, I would have killed myself at diagnosis. No way I would have let that shit drag out”. But “that shit” has been some of the most beautiful, tender, moving, powerful, soul-opening moments of my entire life.

Sometimes cancer is background noise. Sometimes it’s center stage. I am grateful for both positions and spaces it occupies. Because I am here. With breath in my lungs- the same lungs, peppered with cancer. I am here.

“Don’t be afraid of your heart breaking open. The heart that breaks open can hold the whole universe.”

Lymphedema

Dear Lymphedema,

Oh no you didn’t. You picked the wrong girl to eff with. (Trying to clean up my language, we’ll see how long this lasts)…

So, last Monday, the crease of my right arm (above my elbow) felt sore and achey. Didn’t think much of it since I’m a busy (and clumsy) girl. Tuesday, it was achey, slightly swollen, and also red and hot to touch. My thoughts were: blood clot, cellulitis, lymphedema. I decided to call Pluta. They did not seem very concerned. I had an upcoming appointment on Thursday and “worst case scenario, it’s a blood clot, so we can order an ultrasound on Thursday if it’s still swollen then”. Fine. I asked if I should wear my lymphedema sleeve just in case, they said that wasn’t a bad idea. So I did. And I slept in it. (Apparently you are not supposed to do that. Oops). Wednesday morning, I woke up, looked at my arm, and then noticed that my hand looked a little bit puffy. And this began the longest-feeling state of panic in my whole life. Okay, maybe not my whole life, but in recent days.
Long story short, I called Pluta 4 times, waited around for them to call me back, called my primary, finally said screw this waiting shit and went to the ED, waited for 5 hours with my mom, made friends with the triage nurse, got a room, (my three best friends brought me food and ❤️), had an ultrasound (unanticipated PTSD kicked in-brought be back to diagnostic ultrasound), had bloodwork, and at 10pm, I was discharged with no answer other than “edema”.<<<<<<<
lt;<<<<<<
ave lymphedema, a permanent, incurable, disfiguring, and not-at-all understood condition.

Stay tuned. If I do actually have it, you can expect my potty mouth to kick back in full swing.

💪🏼<———-"edema" lolz.

Cancer Anniversary (the metastatic one -sort of)

This is a week of cancer-related anniversaries, and I’ll be receiving scan results too. My head and heart feel full, but I have great people in my life to lean on, should the results be less than good. 

On this day last year, I was on my way to an appointment with the amazing Dr. Joel Yellin following the sudden appearance of an angry-looking pink rash on my mastectomy scar.


A year ago today, my mother carted a skinny, shaking-and-shivering (despite a full head of hair!) little girl to her surgeons office. I was carefully examined, and since my surgeon is amazing, a biopsy was scheduled for the following day. 

I don’t identify with the little girl lying back in the chair listening to the scritch-scritch of her own flesh being scraped away from her. I remember the voices of my surgeon and PA sounding muffled, like they were under water. I remember a slight ringing in my ear. I remember looking down at my chest and seeing blood and iodine through the strategically cut hole-y sterile napkin gently draped over me. I remember thinking that I was dissociating. Today, I do not identify with this skinny, terrified, little girl. Today, I am sure as shit not skinny, I am still terrified, and at times, still very much a little girl. But receiving this terminal diagnosis crushed a part of me -maybe even killed it, I’m not sure. Or maybe that’s just the emotional space I’m exploring lately.  Lately this little girl has her outstretched hand behind her, painfully reaching to the past (possibly a glorified version of it) and looking ahead upon the fanged monster, shrieking loud as a freight train. This monster wants to swallow her whole. This, I believe, is terror. It is my terror.

It is a willful tantrum, a lack of acceptance of my reality that I’m experiencing pretty intensely right now. This first cancer-versary feels heavy. 

I am, however, so glad I followed my heart and my gut and spoke up when I felt something was not right. I’m glad I pushed for a biopsy which revealed that we were not in the clear.  It was this sudden and mysterious rash and biopsy of this rash that prompted the whole battery of tests. The chest ct showed the spots on both lungs, which changed my diagnosis to Stage 4 Metastatic Breast Cancer and changed my life forever. 

Sometimes I think about what might have happened had I not noticed the rash, or had the rash not been present at all. I feel grateful to have had a loud flashing neon warning sign on the outside showing that something was very wrong on the inside. The rash went away after my first chemo treatment, and hasn’t made a peep since. I believe that my angels were looking out for me then, and I believe they are continuing to do so. 

I am ending abruptly because I just realized I’m running late. Keep me in your thoughts and prayers this week. I do not have room for bad news. 💕🙏🏻

Scan day and Huffington Post Questions unedited

Things have been an exciting brand of crazy lately, so I haven’t been able to write, tho I’ve wanted to! Today I have a scan- normal, routine, but the scheduling of it was a bit abrupt. I was expecting it to be scheduled in the upcoming weeks, but after my appointment yesterday, I received a phonecall that they couldn’t get me in then, but could get me in TOMORROW (today) for ct and bone scans. So, here we are, en route to the River Road building (luxury hotel). Prayers for a good outcome are welcome. 
Happy reading!–sorry, it’s long! 
 

Who is Amy Schnitzler?

I am a daughter, a sister, a dog-mom, a girlfriend, a friend. I am a singer, a painter, a writer, a world traveler, a runner, an amateur yogi, a Community Relations Coordinator, an advocate, a teacher, a lifelong student. 

How old were you when you were diagnosed? What Stage?

 
I was diagnosed with breast cancer at 26-years-old. Prior to my mastectomy I was tentatively diagnosed Stage 2 invasive ductal carcinoma, ER/PR+, HER2- (that’s jargon for “my cancer likes hormones”. I was officially diagnosed with Stage 3 disease post-mastectomy, as there were more lymph nodes involved than originally thought. There was a note on my diagnostic CT scan referring to a 2mm speck on my left lung, which was “too small to characterize.” This was in April of 2016. By November, following the sudden appearance of a mysterious rash along my incision on my right side, I was re-diagnosed with Metastatic disease (Stage 4), with metastases to both lungs.

What was your mindset at diagnosis?

I don’t think I had a mindset; I think I was terrified and confused, looking for concrete, black-and-white absolution in a world of grey uncertainty. My grandmother died just 10 days before I was diagnosed. I was processing tremendously heavy grief, and then was diagnosed with cancer. My feelings were all over the map. I was numb, shocked, despondent, and full of terror and rage all at once. I also sensed a bit of pressure to be “brave” and “strong,” to “fight” and “win” very early on, and I think that pressure was coming from both outside of me (cultural conceptions of the disease/”Pink-ness”) as well as within me. As a result, I felt very isolated. There was also great pressure from my oncologist to move forward with treatment quickly, which added to the sense of overwhelm. Making life-or-death decisions is not easy, especially around something as complex as cancer. I think in the beginning, I tried to say, “I got this, don’t worry, I’ll be fine, I’m tough!” when in reality I was a scared-sh**less little girl, longing for someone to scoop me up and transport me back to a world where life made sense. I vacillated between feeling powerful and powerless every 10 seconds, which was exhausting. Powerlessness is not a comfortable state for me (or any human). I think when we humans experience loss of a loved one, of a relationship, or of health and vitality, we feel out of control. If it weren’t for the support of those closest to me (and mental health rehabilitation services!), I honestly don’t think I’d be here today. 

How did your breast cancer diagnosis change your life?

How did it not? To start, I was diagnosed the same week I received acceptance to Graduate Programs at Peabody Institute, Chicago College of Performing Arts, and Rider University for Classical Vocal Performance/Opera. I had to let them know that I was diagnosed with cancer and would need a decision extension as I was waiting for more information regarding what treatment would look like. Chicago College of Performing Arts responded with such compassion and told me they would allow me to defer for a year, should I need to. At that point, I was still trying to comprehend this diagnosis and processing all the feelings around it that I decided it was not the time for me to move to a new city, try to find a new oncologist there, etc. Writing to them that I would not be able to attend that Fall was heart-breaking. Music is no longer my career-path. I recently began working with a new company called Harmonigenic as a Community Relations Coordinator. Harmonigenic is a diagnostic assay that uses photonics to analyze the collagen of breast tumors to predict the risk of metastasis, giving patients more information to inform their treatment decisions. Socially, this disease terminated a lot of friendships that probably would have ended anyway, and it also led me to some incredible people I most likely wouldn’t have otherwise met. I appreciate the people in my world more (Mom, you’re the best). My values are also a bit different. In my life before cancer, my identity was very much wrapped up in my physical appearance -my weight, my body, my face, my hair. Nothin’ like some good ole’ chemotherapy to zap your hair off, give you 20 extra pounds (thanks, steroids!), and force you to challenge your ideas about yourself. I’ve had to find my worth outside of my physical identity, and truthfully, that’s been a pretty healthy thing. 

What do you wish you’d know before being diagnosed with breast cancer?

I wish I was aware that breast cancer can and does happen to young women. Maybe I would have gone to the doctor the moment I discovered the lumps under my arm instead of putting it off for several months. I wish I had known about the impact of everything we consume and put onto our bodies, the harmful things we are exposed to on a daily basis. Diet is so important! We live in a culture of processed food, and we are also the sickest we’ve ever been. There’s a link there. 

 

How has this experience awakened you to yourself and your purpose?

Cancer has been the ultimate perspective-shifter for me. I think I was always an empathetic person, but receiving this diagnosis has opened me up further to the pain and suffering of others -I don’t think that I was exceptionally selfish before cancer, I think I was just young and naïve. This diagnosis has illuminated the role of human connection in the facilitation of healing on all levels. I advocate for women with metastatic disease because it is an isolating and terrifying diagnosis and we need each other’s support. 

Tell me about your advocacy work.

Most of my work is centered around conversation with people about the reality of this disease. When I was first diagnosed, I began a blog to chronicle my journey with breast cancer. I was most recently featured in a Facebook live interview on Metastatic breast cancer at Pluta Cancer Center, where I receive treatment. Last February, I was featured in a NBC Nightly News story on a study about the benefits of exercise for chemotherapy/cancer treatment induced fatigue. In October of 2016, I was in a local news story discussing breast cancer in young women and the power of self-awareness. I am currently co-facilitating a grief group at a local mental health rehabilitation center, where I openly share my experiences with the disease. My new job at Harmonigenic is all about patient relations. 

What word do you wish you could take out of the breast cancer vocabulary?

Mortality. We need a cure. This is a disease that kills 41,000 women (and men) per year -that’s 113 women per day. It angers me that people believe breast cancer is “curable” in the early stages, when 1/3 of all women diagnosed with early stage disease will become metastatic at some point after completing treatment -whether it’s months or years down the road. 

If there was one thing you could change about breast cancer and how people view it, what would that be?

It is not a pretty pink disease. Not everyone who gets diagnosed gets to walk away. Metastatic breast cancer is the only version of the disease that kills, and yet it receives the least amount of attention (people don’t even know what it is!) and the least amount of funding for research. Less than 7% of all the money received for breast cancer research goes to metastatic research. This needs to change, and it needs to change NOW. 

Why is it so important to you to support other women with breast cancer? 

Receiving this diagnosis and needing to make decisions regarding barbaric, though possibly life-preserving treatment is pure unadulterated Hell. The isolation I felt is something I can’t explain well with words. I can only speak of the constant clenching in my chest, the empty gnawing feeling in the pit of my stomach, those delicious weary moments between sleep and wake where all of it felt like a terrifying nightmare, where if I put my two feet on the ground, I’d walk into the world I remembered from the life before breast cancer… and then the crashing back to reality… No woman should have to experience that (or any variation of it) alone. This diagnosis has led me to some extraordinary women who are also dealing with this disease -I’ve lost some dear friends, too. Connecting with other women who are facing the same unique challenges, navigating their journeys in their own way has been full of opportunity for learning, growth, and healing. I also believe that systemic change is only possible when we come together, inspire one another, and educate our communities on the ugly reality of this disease, and point people to the organizations that actually support us with research, such as METAvivor, and METup.  

What would you tell a newly diagnosed young woman?

Breathe. Focus on surviving in these early days. Balanced, healthy eating, hydrating, and sleeping will help, as will laughter. Reach out when you are feeling vulnerable, which will probably be often. Don’t suffer in silence; you are not alone. Harvest your eggs even if you aren’t sure about children. It’s better to have the option than not. And most of all, be gentle with yourself -you just stepped into a whirlwind. Allow yourself time to process and grieve. And as far as treatment decisions go, do your research, ask lots of questions, tune out the noise around you, and do what feels right to you -it’s your life. 

Has cancer changed how you see adversity?

I certainly do not get upset over “little” things as often as I used to. I’ve always been an anxious, easily flustered person, but these days I reserve my panic attacks for Doctors’ offices, scans, port draws, etc. I think getting diagnosed with cancer forces a person to face adversity head on.

What one word defines you?

Determined. I am determined to live an awesome life, a life not dictated by my treatments or side effects, or cancer in general. I am determined to love the beautiful people in my life. I am determined to contribute to this world in a meaningful way. 


Dear expensive hair, stay out of my eyes please. Also, this is what the end of ibrance look like (note the eyebags). 😴

Peace and love to you all💕