Today is the day because don't you know I have cancer?

"Being ignored is a great privilege. That is how I think I learned to see what others do not see and to react to situations differently. I simply looked at the world, not really prepared for anything." - Saul Leiter
 

It's 6:30am on a Thursday morning, almost two weeks to the day that I was diagnosed with metastatic cancer of an unknown primary source. 

I thought I would have heard from them by now. The oncologist at UCSD Moore Cancer Center.  I mean, it's been over a week since they received my case. How can they possibly still be reviewing it? Don't they know I have cancer? 

Thoughts circle my mind like a whirlwind of chaos as I sit up and attempt to settle into my first meditation practice of the day but all I can think about is the big, goopy cup of coffee I so friggin' want right now. I'm missing some of my old rituals.

As committed as I am to eating and drinking things that only promote alkalinity in my body, I just want to be sitting at the base of a big mountain in the early morning, with the soft glow of the spring light kissing the snow capped mountains, sipping on cheap, instant goop. I wonder if I'll ever be able to drink coffee again without feeling guilty. 

I'm growing frustrated with the system as I wait on more information. I'm starting to feel like I've been swept under the rug, once again.  

Over the last few days I've noticed a certain irritation, an impatience for myself and with others, bubbling up from within. My type A side is feening for more structure and order yet my wild and free spirit is enjoying the unknown. I feel like a total conundrum. My head is spinning. 

I take a deep breathe and focus on my breathing, doing my best to attempt to let go of any linger irritation and chaotic thoughts. 

"Just focus on your breathing, Amanda." I quietly say to myself as I place my left hand on my chest. "Let all that other junk fall away. For now."

I come to from my trance-like meditative state and realize I actually meditated. This makes me excited because honestly, I really stink at meditating and lately its felt more like a violent boxing match between the competing thoughts in my head instead of a mediation practice. Screw the silence, let's just see which ones I can keep at bay the longest. That alone feels like a success.

"Today's the day!" I say to myself as I slip out from under the covers, resting on the edge of the bed as I pull on my fuzzy white Penguin socks. The ones my mom gave me for Christmas two years ago. 

Today is the day they'll call. Don't they know I have cancer. 

I prepare my warm lemon water and stand staring out the kitchen window at my back yard. I look at the garden and a smile forms across my lips as I imagine the harvest we will have in a few months. I think about the conversation my housemate and I had yesterday as we were cleaning out the garden, getting it ready for planting on Saturday. How empowering it was going to feel to grow our own food. I laughed and told her that I'd rather be hands deep in dirt and soil then out partying any day. 

I'm shaken from my memory by the sound of boiling water. 

Today is the day they'll call. Don't they know I have cancer. 

Earlier this week I joked with a friend and said, "they better figure something out soon cause I'm already bored with cancer. I'm bored of talking about it.  I just want to get back to my life."

So that's what I decided to do. Get back to it. Because despite this recent diagnosis of mine, I must keep moving forward. 

When I first realized my gut feeling was becoming my reality, I immediately thought of all the stuff I was doing. I am only half-way through my first semester of school. Last time, twelve years ago, I had just completed my first quarter back at school. All I could think was, seriously? Please, not again. I don't have time to put all this on hold agin. 

So today, they have to call. They have to because don't they know I have cancer. 

And my art. I have momentum. I have plans. I don't have time to put all this on hold either.

I wonder; why is it that right when things feel good, right when I feel like I'm going down a path that feels so friggin' good, life throws a giant curveball? 

I've been mulling over something for a few years now, something I think people often say to provide comfort but I wonder, does it? 

"God does not give you more then you can handle."  

I've been turning it over and over in my head because it bugs me. I think it’s bullshit sometimes. But I also find a lot of truth to it. I've found myself repeating it often. To myself and others, as a source of comfort. But I don’t know what I believe anymore.

What I feel like saying to God is this:  

"I'm good God. I think I've had my fair share of challenges to learn and grow from. I mean, it's not that I can't handle it. I KNOW I can handle this. I am one strong bamajama. There is no denying that. But God, I'm good. I think I've had my fair share."

And then I hear God laugh in the far off distance. And I give him my most perfect glare and eye roll. 

Today they'll call. They have to. Don't they know I have cancer. 

I get ready for school and call Brooke, my best friend back in Seattle. We catch up, both sharing our latest frustrations with the medical system and then we encourage the other to call our doctors and insist on moving forward. "Be your own advocate!" I cheer and laugh into the phone. "We are women, hear us roar! The sounds of claps and cheers fill my head and I cheer on my best friend. 

I hang up with Brooke and silence.

I feel weak, forgotten and powerless as I call UCSD. 

I'm transferred to a gal named Wendy and she informs me that my case has, in fact, finally been approved. I can't help but suddenly feel like dollars signs are hanging over my head.. 

"April 10th is the soonest I can get you in to see one of the oncologist." says Wendy. Tears well up in my eyes. I clear my throat and try to compose myself. " But that's over a week and a half away. You don't have anything sooner? I've already been sitting on this diagnosis for two weeks. I'm also losing my insurance at the end of April and there will be a lapse until I can get private insurance. I kind of need to do whatever it is I need to do before that" 

"You mean surgery? Oh well, we are already booking out into the middle of May for that anyway. I'm sorry. We are just really busy." She replies. This fact alone is just depressing in and of itself. They're just "really busy." 

"But wait!" I want to shout. "Don't you know I have cancer?" 

"I guess just put me down for that one." I say as nicely as I can. I know I can't take out my frustrations on her but I surely want to. "Can I get on a cancellation list?"

"You can call back Monday and see if anyone's cancelled. It does happen every now and then." Wendy replies.

"Okay, thanks." I whisper.

I hang up the phone and give myself a few moments to cry in the drivers seat sitting in my car in the school parking lot. 

Because don't they know, I have cancer? 

The Hefty Price of Good Health

Last Thursday I had a procedure to test the lining of my uterus for any signs of cancer. This one procedure is going to cost me $2,700 out of my pocket. And that is with decent insurance. An insurance I already pay $329.00 for every month.

It’s overwhelming and paralyzing at times. Did you know that medical bills are the number one reason people file personal bankruptcy? I’ll say that again. Medical Bills are the number one reason people file bankruptcy.

I’m not telling you this because I want something. I’m not telling you this because I expect anything.  And I’m not telling you this because I want you to feel sorry for me. I’m telling you this because this is a very big reality for many people.  I am one of so many who has to figure out how they are going to scrape up the money to pay for something that just may save their life.

As much as I don’t want to put a price on my life I often find myself wondering where is the line I have to draw. How much can I really afford when I have to do these tests and procedures every single year all while still trying to have some kind of life. What's the give and take? Do I sacrifice living a life to save all my money to pay for these tests and procedures? I feel like I'm already pretty damn thrifty and frugal as it is. And at the end of the day, if this does come back with a vengeance don't I want to look back at my life and know that I lived too? 

These procedures and tests aren’t something I have the luxury of missing. Believe me, I tried talking myself out of this one after I found out how much it was going to cost me but I just couldn’t because...what if this is the one. What if this is the one where they find my monster? What if this is the one, because caught early, saves my life?

Last week at my pre-op appointment with my oncologist he reminded me that this is still serious. He told me that two other people he treated with the same rare diagnosis, their monsters did eventually show up and believe me when I say this, the kind of cancer that eventually appeared would make just about anyone cringe.

And the truth is, if I can catch things early, then I can save myself from a whole lot of pain and suffering in the long run but at the same time, I’m doing this all by myself and I only make so much money and I can only afford to pay so much. As my mom always says, you can draw blood from a turnip.  

And although I’m more than certain I’ll be just fine, it’s all just really fucked up sometimes. And as positive as I try to be about all of it, sometimes I sit in the bathtub and cry because I feel so alone with having to figure out all the details involved from procedures to payments.

And this is where I trip up. This is where a little bit of the pity party starts to creep in because I’m scared and I don’t know what to do.This is where I start to feel guilty for living my life and not saving every single penny for a rainy day. This is when the anxiety and overwhelm catch my breath and I crawl in bed and pray for something, anything to take the fear away. 

But really this rant stems from the reading of another person committing suicide and me wondering if they had access to proper healthcare, to the proper dialog of mental illness, to proper care from people who...care. If so, could this have been prevented? Would they still be here? How much are we missing that could be prevented from mental health to physical health if we just had better care in general? If WE just cared more?

And I get it. If you’ve never been through something you just don’t think about it. I totally get it. But you guys, something has to change and in all honesty, we are the ones who have to demand the changes.

Something is really wrong when those of us that need these procedures to potentially save our lives are considering canceling them because we are wondering how we will pay for them.

Something is really wrong when people are losing everything because they can’t afford to pay for rising cost of healthcare.

And something is really wrong when someone is struggling to find hope and meaning in life and think killing themselves is the only answer when we should have more discussions and solutions for them. We need to have more dialog around the fact that there is nothing to be ashamed of if you struggle and suffer from mental health issues and you can't just affirm it away or paint some positive over it. We should be creating a safer world for people to share openly instead of feeling like they have to put on a fake smile to make everyone else more comfortable. 

And for fuck sake, there is something incredibly wrong when we are more concerned about our right to bear arms over creating a system that truly works and where everyone has affordable, I mean truly affordable access to all forms of health care.

Every day people are having to make choices about their health and well-being that will affect their lives in significant and potentially deadly ways based solely on whether or not they can pay for it. Yet, our government doesn’t even blink an eye at shoveling an obscene amount of money towards, in my opinion, unnecessary military expenses or the potential funding for a frigging wall along the Mexico border. And now our president is threatening to shut down the federal government in September if Congress does not provide more funding to build said wall? Mr. President, I beg your pardon, but I do believe we have more pressing issues you narcissistic weasel.

Like people dying because they can’t afford to truly take care of themselves. People in so much frigging pain but can't do anything about it because they don't know where they will come up with the money to pay for it. So forgive me if I don't give a shit about your damn wall.

I am in a lot of chronic pain down my left side of my body and I just cancelled my physical therapy appointment for this week because I don’t know how I’ll continually pay my $70 copay plus whatever else they charge me every time I go to these appointments on top of the $2,700 medical bill I’m about to get. This doesn’t even cover all the other appointments and screenings that I have throughout the year. Again, I tell you this to paint a reality that a lot of people have to deal with. It's no wonder depression and anxiety and massive overwhelm are so prevalent. 

This is the part of cancer and illness and disease no one really wants to talk about.

We like to just wear our colored ribbons and throw a few bucks at The American Cancer Society but it’s not truly getting to the issue. WE need to care more about our fellow human beings and what they are going through even when our own shit seems like too much to bear. 

And yes, I know that everyone has their stuff. I truly get that. Life can be really expensive. Life can be really hard. But there has to be something more that can be done when it comes to people’s lives being at stake if they miss or can’t afford the care they need.

And maybe I'm missing something? Maybe these things do exist? In that case, we need to make them more available and known to everyone. Not something you have to ask for. 

I know there is no easy solution here but in order for us to even come up with one, we have to really start to look at the problem. And not just when you are faced with something and it becomes a part of your own reality. We have to look at it from less of an ‘I’ perspective and more of a “We” perspective.  We need to take care of each other people. We need to care more than just wearing a pink ribbon or throwing a few bucks at an organization and going about our day.

We have to, as a collective whole, stand up and say WE deserve better treatment and not just "I deserve better treatment." We are all born the same. No person should be treated better because of what’s in their bank account.

So I'm here to say that if you are going through something and don't know how you are going to get through it or pay for it, write to me. Let me share this with you and possibly our two minds together can create a solution. Becuase the last thing you need when going through all of this is to feel alone on top of it. 

I'm here. 

Ah, Cancer...it's been awhile.

"I do not understand the mystery of grace -- only that it meets us where we are and does not leave us where it found us." -- Anne Lamott

Well, I'm pretty sure the title of this post says it all but just to be clear...

On Friday, March 17th, I was diagnosed with metastatic cancer with an unknown primary source. 

For those of you who are a little uncertain what metastatic cancer means, it is cancer that has spread from a primary location to another location in your body. 

Yeah, it's still a little hard for me to wrap my head around too. 

However, if I'm honest, it really wasn't that shocking given the golf ball size swollen lymph node in my groin. Hearing the words come out of my doctors mouth was still, needless to say, disheartening. 

For me, the last six weeks have been filled with doctor appointments, antibiotics, ultrasounds, CT scans, a colonoscopy and upper endoscopy, biopsies and waiting.

A lot of waiting.  

And you probably want to know the story, where I'm at and how I'm moving forward with this very strange and unfamiliar diagnoses. 

I've been debating on whether or not to share and how much to share because there is so much unknown still. Part of me wants to keep this tightly wrapped in my protective bubble of a handful of family and friends because it makes me feel safe. Ultimately, I think there is great power in vulnerability. I think there is a power so mighty and fierce in the collective whole, and that in some strange way, that by sharing, something great will come from this. 

In some strange way, from the moment I was diagnoses, I've felt this, in an almost unexplainable way, was a gift that will unfold with time. And part of my purpose in this life is to share, with the hopes that someone reads something that may help them. 

So here is the story, where I am at with all of it and what I am currently doing about it. 

THAT LYMPH NODE IS HUGE!

About six months ago I went to the doctor for a swollen lymph node in my left groin. It was big enough to be concerning and it was painful and also coincided with another infection but my doctor didn't seem too concerned. Even when in my gut I wanted to press for more tests, I ignored it and kicking and screaming, got on the antibiotics she prescribed and the infection and lymph node went away with a seven day dose. Two weeks later, I was climbing Mt. Whitney and my swollen lymph node was a thing of the past. I didn't really think much of it other then my initial gut feeling of, "Something feels off here."

Then at the end of January I developed another infection and the lymph node became swollen once again and started to become extremely painful. I decided to go back to my doctor and see what she thought. However, this time I went back to my OBGYN instead as I had a better relationship with her and I knew she would be fully on board to do anything to get to the bottom of this. 

 We decided to put me on stronger dose of antibiotics for 14 days because there was a chance that if this was again an infection, it could be contained in the lymph node. So, again kicking and screaming, I started this gnarly dose of antibiotics but when nothing changed, we both became concerned and decided that we needed to explore this further. 

The following week I went in to have an ultrasound which showed that there was definitely an abnormal growth. Duh. I'm no medical professional but the golf ball size lymph node in my groin was a pretty good indication that something was abnormal. 

Then came the biopsy; which, let me just say, I've been poked and prodded so many times in my life and I usually barely blink and eye, but this one got me good. More so emotionally then anything.

And then it was back to waiting. Lots of waiting. Which is always the worst. 

Then on Friday, after an emotional week of doctor calls and waiting, I got the call from my doctor with the final pathology report:  Metastatic Cancer. I had cancer, it had spread to the lymph node and we have no idea where it started in my body. 

hey, what's up your um....?

Serendipitously, I had already had my annual colonoscopy schedule for March 21st and my mom was flying in March 20th to take me to my appointment and spend a little quality time with me. My colonoscopy is a part of my yearly screening for colon cancer, which I had when I was twenty-four. 

Part of me thought this was going to be it. I was almost sure of it. But after my upper and lower scope showed no signs of stomach or colorectal cancer, I was rather shocked (and relieved). We could cross those off the list. Can you see the excitement in my eyes right after my procedure. ;)

Then on Thursday, March 23rd I got a CT scan with a barium contrast to indicate if the primary cancer was anywhere from my lungs down to my reproductive organs. Other then the lymph node in my groin, the scans revealed nothing. No masses or tumors here either. 

This super 'delicious' stuff is what you take before a CT scan. I kept saying it was my "banana milkshake" to my mom while singing, "my milkshake brings all the boys to the ground..." as I chugged the chalky paste down. 

So now what? 

An interesting thing happens when you are diagnosed with cancer. You want answers and you want them RIGHT NOW. You want to know exactly what you need to do right this very instant to make this thing go away. 

Time stands still yet everything else is moving so damn fast around you. 

Its like in the movies where the main character is standing in a busy intersection and everything is racing around them at lightening speed and you are just standing there staring. How can life really be going on around you when YOU just found out you have cancer? 

The big "C" word consumes your every waking moment. If you are extremely proactive like myself, you are researching any and everything you can. From possible forms of cancer that metastasizes to this specific lymph node, to holistic and natural treatments and protocols I can start incorporating right now to get the body ready for whatever may come, cancer is on the brain at all times. 

More then anything though, this has been a huge exercise in seeing how far I've come and leaning into the unknown. I've been forced to dig deep and bring forth everything I've learned over the last few years about coping and thriving through the unfamiliar waters of the unknown without completely melting down. 

And throughout this all, I've felt a sense of calmness and peace I've never felt before. As if, everything tool I've learned, from mediation to self-love and forgiveness, to eating in a way to support my body through this, to asking people for exactly what I need, has armed me with everything I need to get through this patiently. 

Because unfortunately, there is a lot more waiting ahead of me. 

And that is where I am at now. 

My case has now been turned over to the Moore Cancer Center oncology department at UCSD and is being reviewed by the oncologist on staff. I hope to get an appointment with them in the next week. 

But for now I wait. 

I imagine next will be a PET scan to indicate potential hotspots and possible surgery to remove the lymph node.

So now the big question. How am I emotionally with all of this?

Initially it was hard to hear that once again, cancer had found it's way back into my life. Being faced with it at such and young age and watching members of my family and friends go through it for several years, I'm no stranger to cancer. But here's the thing, no matter how many times you hear the word, it's still just as shocking when someone says, "You have cancer."

Then throw in the word metastatic and it can send you into a bit of a panic. 

However, after the initial shock wore off and as my colonoscopy and CT scan came back clean, I'm optimistic that this isn't as bad as I had originally thought. That hopefully, it's just some weird rare cancer that is confined to my lymph but looks like metastatic cancer.  

In the meantime I've put myself on a super strict Alkaline diet, working with my natropath/Chinese medicine doctor incorporating as many holistic and natural therapies as I can right now to get my body and immune system as strong as possible.

I strongly believe the body can heal itself when given the right tools. I also believe that sometimes Western medicine is needed and this is one of those times. So I'll be using both to heal from whatever is going awry in my body. 

As I wait to gather more information I'll fight like heck to do whatever I can in the meantime to start the healing process. And that looks a little something like this:

Immune supporting therapies
Alkiline, organic diet ONLY
Colonics and enemas to properly detox
Therapy and Reiki
Prayer
Visualization and mediation
Essential Oils (Frankincense and Myrrh) and many others
Laughter - lots of it!
And I'm reading and talking to EVERYONE I can about all my options. I'm not going to rush into anything until I know everything I can. 

Below is one of the books I'm reading. 

And the lemon tree my mom bought me... when life gives you lemons...you drinks LOTS of lemon water for detoxification. 

I know some of you may role your eyes at this but there are countless stories and research out there that support the incredible benefits of Integrative Medicine and that is the only way I'll be comfortable treating this. 

At the end of the day, it's very personal. Although I choose to share openly because I believe sharing and connecting with others is not only healing for myself but could possibly help someone else, this all comes down to one thing; what feels right and the best to me. 

And I truly hope you learn to apply that same idea to your own life. 

In the meantime, I have a favor to ask all of you. Whether you pray, meditate, think positively, climb big mountains to feel closer to your source, please keep me in mind when you are doing all of it. 

Keep me in your thoughts, your prayers, your meditations, your light. When you are doing things that make you happiest, I hope you can radiate that joy my way. I believe in miracles. I believe in the power of the unknown. And I believe, more then anything, that I will get through this with your love, laughter, and light shining my way. 

I plan to document this journey as much as I can through this blog and videos. So if you want to be apart of it, please check back regularly. 

Until then, so much love to all of you. 

Love, 

Amanda