Finding Joy

This post has been a while in the making. My last one was about depression. A lot has changed since that post, so much that I struggled to chronicle it. The last few months have slid away and through chaos, sweetness has reemerged. Hope has grown. Joy, against all rational thoughts, has made its way home. I hit the bottom, I really did, but it was necessary I think.

I went to MD Anderson not knowing what to expect. When I left things felt very bleak, the stress of the cancer was taking it's toll both on myself and my relationships. Feeling loss and grief makes a person difficult to be around and amplifies the storm that rages.

Once there, the guru on the mountain failed to provide me the magical cure my heart desired. I was not necessarily surprised. However, it was a chance meeting with the genetics counselor that proved most valuable. After a routine meeting, she didn't rush me out. She stayed. Chatted. Answered questions I was too scared to ask (what would actually kill me? Answer: Infection or liver failure). I was honest with her- I felt death was inevitable. I told her the frustration I felt about having to lie about my feelings to protect my loved ones. I didn't want to be weak. I didn't want to be a burden. Positivity, I had failed at it. I was imploding and in the process, hurting not only myself but still hurting my loved ones.

The week I was in Chicago I told my mother the objective truth. I felt like I had a lottery ticket - the promise of a million dollars clutched tight to my chest but I had to live realistically until the old dude with a giant check actually knocked on my door. She didn't understand how hope and acceptance could beat simultaneously in my heart, but it does. It was all going to be ok- no matter what happened to me. It was going to be ok. I felt tremendous relief. I was done wasting my energy on the worst case scenario.

The gloom seemed to lift. I came home and found a husband that was understanding. The path had been extremely hard on him too but within his own journey, he had found his way back to me and back to a genuine hope.

Since that moment, I haven't thought about it anymore. The fear and anxiety seemed to evaporate from my world. All that stood in the way of living a happy life was the anxiety of what that should look like. Days I had felt sick, I didn't let myself rest because in my head I should be working on some great artistic legacy. I was tired to begin with, and now I was piling on imaginary pressures I couldn't possibly fulfill.

I was taken off chemo completely upon my arrival in Charlotte. I would be starting a clinical trial at home and we had to wait for my system to "wash out".

Looking good by the bathroom.

Slowly, the fatigue lifted. Slowly, I felt like going walking, going to the mall. We unpacked boxes that had hung around. We painted the living room and set-up my bookcases. On Halloween, we went to a little lounge dressed as Batman (me) and Joker (girl joker to be exact, Michael). We danced, staid late, and more than one person came up to my husband to tell them how sexy I was. It felt amazing. This moment I was convinced would never come again, that felt distant, impossible, forever lost...I saw genuine joy in in my husbands eyes as he held me. I felt beautiful, and strong, and able. My heart bursts just writing about it. My depression lied to me and seeing that lie unravel was powerful.

He can certainly pull off a corset.

So often in life we get into such a dark place that we lead ourselves to believe all the good things will cease to be. It's simply not true. We allow our fears to cripple us. Fear takes a hammer to one finger. Takes another. Shatters a hand. Smashes an elbow. We feel pain and imagine that our skin will remain black and blue forever. More and more of us is broken - but like in some horror movie with a twist, the hammer was in our other hand the whole time.

Think of your absolute worst fear...realistic fear. Sure, we can all imagine coming home to a serial killer who has hacked our family into tiny pieces and then misfiled our taxes, I don't mean that. I mean, losing your job, divorce, the everyday dark spots of life. Take it out into the light of day and access it. Is this really a possibility? If it is, what can I do to mediate the damage? Who can I count on as a support system? Sometimes having tangible plan for the worst case scenario helps take away some of the power it has. Everyone has had a stomach ache and just thinking about it makes their stomach tighten more, intensifies the pain and discomfort. Relax and let go.

Your anxiety only feeds the monster.

Listen to me well, your fear lies to you. It is a terrible judge of scale and reality. When faced with real problems, its even worst at making the right decisions.

Michael and I go to an awesome
masquerade ball in Chicago.

A Girl Named Depression

I have been updating less and less. I have, at least for the moment, run out of witty observations. The ugly truth, my friends, is that I have been fighting against depression for the last month and a half. Part of me doesn't want to admit it and the other part of me recognizes that we all deal with it sometimes...there is no reason to feel shame for it. That only feeds the monster.

I was very confident about my second drug. I really dug my heels into being positive, I was expecting the best. Instead I was told it wasn't working. I was put on a pill, and like that was thrust squarely into maintenance mode. Curative options were off the table and I felt like I had to accept reality...that I would deteriorate, that my life would get smaller and smaller until it vanished from existence.  Couple this with a horrible first month on the drug...three straight weeks of high fevers, little sleep, weakness, extreme weight loss, home bound - hand in hand with my growing feelings of loss and grief- and it was a perfect breeding ground for all the terrible fears and insecurities in me.

Before my diagnosis, I felt like I was finally getting my life to where I wanted it. I had fought through a lifetime of hurdles but here I was...a lovely apartment, financial stability, a wonderful husband, the love of my friends and family. I felt like a new beginning for what would be a beautiful life. Fast forward a year later, I feel like that life has been taken from me piece by piece. I am angry. I feel loss. I have nothing and no one to direct it to. I want my life as it was, even fragmented, even just bits of its shadow.

When you feel loss, you hold tight to what is left. And what wasn't broken, you break yourself in your desperation. You burn bridges to places that feel distant and inaccessible. You isolate yourself until its you, your bed, and the ceiling. You become a black hole that devours what little bits of precious light remain.

I haven't been feeling positive these days. I don't feel strong. I feel like a fraud.

Depression lives inside us all at times. We experience loss - of confidence, of love, of freedom. We feel devalued, unwanted, and incapable of effecting change. We lash out in pain and fight the wind, only to realize we hurt only ourselves and those we love as we took wild punches at the universe. We eat cookies, cry, stare at the ceiling, and try to stuff all the ugly bits back inside ourselves when it's time to step back out into the world again.

I am taking steps to heal. Trying to find hope, even if it means collecting unicorn farts against all reason. If my fears are true, I don't want to live the rest of my life in anger, fighting, and burning the world down around me. And if they aren't, I don't want to wake up one day to find that I was the one who destroyed what good remained out of grief.

Depression isn't something you snap out of. You work on it day by day. You employ logic and delusion in equal measures. Find your friends, seek your family, create, make things to look forward to...forgive yourself for essentially being human. Take the pieces and make something beautiful. Might not be what you wanted, but it will be what you need.

How to Turn into a Lizard Person

Well, I have been missing in action here, no? Just an update on what I have been up to. I need to get some more topics too, I hate just rambling about myself. Why read something you don't relate to? I promise, I'll be back to regularly scheduled programming some.

The Bad: The Last Few Weeks

These last three weeks have not been fun. I am on a new chemo pill (which I alone can handle, it is considered bio-hazardous for anyone else to even look at). When I started it, we thought that not getting infusions would give me some more freedom. Boy, was I wrong.

I have had a high fever for more than TWO WEEKS. I'm popping ibuprofen like M&M's. I am crazy fatigued. At random intervals during the day I get the most violent chills I have ever felt. It's like my bones are made of ice, so even 4 blankets on me does little.

Well, I'm off to bed.

On Saturday I woke up with red freckle like splotches on my face and chest, which looked almost exactly like it does below. I kept joking that I always wondering what it was like to inhabit an Irish lass's body and now I could look down at my boobs and know.

Before

However since then they have all grown in size and spread. Now I know that the lizard people / Illuminati shadow coalitions have conspired to turn me into a lizard person too.  

After

I spend all day in bed, or the couch. It has been hands down the hardest few weeks of this process. I am so fatigued I can't even do anything, and have lost 9 pounds over the course of 11 days. (I guess lizard people have to be lean.) I am hoping at this point that symptoms really even out soon cause this shit's crazy. 

The Good: A Second Opinion

In the beginning, when I was told I was incurable by doctors I was urged to get a second opinion. I knew well that anywhere I went I would receive standard first-line treatment so I decided to wait and see what results came from initial rounds of chemo. Well, I am past that point now, and more creative approaches are now needed. My doctor where I am is a good one but is no longer offering any curative options. So I have to find someone who can.

I have started the new patient process at MD Anderson in Houston, TX. They are ranked #1 in cancer care in the US and recognized globally. They specialize in colon cancer with liver metastases. Many people, like me, that were told they weren't candidates for surgery were told it was totally possible at MD Anderson - and cured where others gave them a death sentence. I am so very very hopeful. 

I am waiting for my appointment to be scheduled. Once they get your records, they review them. You are told that the visit is 3-5 days, during which you will see an entire team of doctors (oncologists, surgeon, radio oncologist) and have testing done. Hope to be there by months end. We will see...

Cross fingers and toes. :)

Take your Tumors to the Beach (+ Scan Update)

The last week of July, I spent with my toes in the sand most of the time. My husbands family and us, we rented a beautiful beach house by the water. I have never spent significant time at the beach, and rarely have significant vacations of leisure. There was a lovely view of the ocean from the balcony. The beach wasn't crowded, the water was literally emerald colored and warm.

When you have cancer you start to feel frail. This week made me feel normal again. I fell in the waves, tumbled, and nothing happened. I didn't even burn. It was nice to feel invincible.

Pre-vacation Michael

It was a wonderful time, with the exception that Mike got food poisoning from eating some turkey lunch meat. Damn you lunches of meat! He spent a day delirious and sick. I told him I would care for him and he was so emotional, he didn't want me to care for him. He didn't want me to play caregiver. Watching him be nauseas, out of it, I felt helpless and anxious. I imagined that is how he feels when I am sick.

The whole week had a streak of meloncholy that swirled deep down. In our world, happy moments are always laced with a sadness. On the last day, we went at dusk to say goodbye to the ocean. I stood by myself watching the lights dim, people in the distance walking hand in hand  faded into the sea mist. Their silhouettes looked like sea glass whose edges had been worn down by the ocean currents. I started to cry. Such beauty in front of me. Would I ever see it again? Michael came over and just hugged me. You can't take these moments for granted.


The Hermit Crabs

I have  always wanted a pet, but we are low maintenance people. I decided I wanted a hermit crab. We went to those little souvenir shops and got one huge one and a smaller one. We gave them ridiculous names too. The big one is Duchess Elizabeth Crabbington of Islandton (because they live on our kitchen island) and Sir Ignacious Crabbington III. After the cat scan result on Wednesday, building the crabitat was strangely zen and helped recenter me a bit. Michael and I really put thought into making it awesome for them. I love watching where they go to, what they do.

Speaking of which, one disappeared last week. We had them in a smaller tank and I had not locked the little clear plastic ceiling. I wake up and call my mom over to introduce her to them. Tiny one. Check. Big one? It had freakin' houdini'ed itself out! And left the lid on!? It was literally baffling, I looked everywhere. No crab. Meanwhile, the tiny one took the opportunity to celebrate being king of the hill for a moment. After not moving for a week out of his shell, he took to standing on top of his coconut triumphantly, overseeing his domain I guess. We did eventually find the other, hiding in a closet on the other side of the house.

Scan Update 

So, this update was not good. I had 10% growth, meaning the new chemo did not work with me. I was placing hopes of large gains on it and no dice. I am now on an oral chemo (a pill I take all month), but changes won't be seen for a while. I am having sharp liver pains as the tumor makes himself at home and shoves everything else out.

I am disappointed. I told the doctor "I feel like I am sailing further and further from remission". He sighed and gave a definitive "Yes, you are." I am running out of potentially curative options and into maintenance territory. I want to be hopeful, but I have to be realistic that this is becoming less likely. I can't hope on unicorn farts. I am on third-line treatment, and its a drug that will maintain the tumor stable, not really shrink it. Options for big change are sliding away for me. I also found out I wasn't eligible for the clinical trials coming up...but maybe I can find something somewhere else? That remains my one sliver of real hope.

I don't want to seem as I am giving up, I am not. But at what point does one recognize the very real possibility you have to plan your life around the knowledge that you have limited time?

At home, Michael was very supportive, still optimistic. We focused on the crabs to forget it. In my head, I am going to keep going as has been. I want to plan to see more places, more beaches, I want to be happy for as long as I can. That is the only thing I have control over.

The Anti-Chemo Crowd: An Angry Manifesto

Talk to enough people and you will run across "Chemo is poison! It kills you slowly and they profit from it!" or "She choose not to do chemo and travel the world, so awesome! That stuff is really what kills you. Is that worth it?"

Oh. My. God. Keep me from strangling someone.

I respect people who have undergone treatment and choose to stop down the road. I respect the person who chooses not to. It is their body and they can do what they want with it. But what angers me is the peanut gallery that chimes in and denigrates treatment, specifically chemo, as if foregoing it is the "smart thing" to do. Their comments lack serious perspective.

Example 1: Forego chemo and avoid all those nasty side effects!

This ignores that advanced cancer itself can have serious symptoms. My quality of life at the time of my diagnoses was terrible. Getting dressed for work looked like this: Put shirt on. Lay down. Put pants on. Lay down. Make toast. Lay down. Washing my hair took so much energy I would be out of breathe! Eating was painful, so I ate a slice of toast a day. I lost 45 pounds rapidly. And severe pain rang from my liver all the time.

With chemo, I am tired for a few days, don't have much of an appetite, have painful hands- but I live a pretty normal life most of the time now. Tell me- would I be traveling the world if I couldn't get out of bed?

Example 2: Go skydiving with the time you have left (a la, the Bucket List movie)!

Pretending I had no symptoms from my cancer, did I mention I work full time? That I am a 30 something year old with no substantial savings? I am lucky to have some help with medical bills through wonderful donations to my GoFundMe, but that doesn't mean I can go on disability tomorrow and afford to go ride an elephant in Indonesia. That is a reality for a lot of people. Without treatment, most of us wouldn't be having life-affirming experiences riding a motorcart in Italy. We would just be dying slowly on our fucking couch.

Example 3: What works for a 90 year old woman does not for me.

I keep seeing a post for an inspirational 90 year old that forewent treatment to travel the world- she was 90. The comments glow with anti-treatment sentiments. She lived my life three times over. Enough said.

Example 4: Chemo destroys your body, so it is not worth it.

You know what else destroys your body? Cancer. Before chemo existed, the death rate from cancer was pretty much 100%, unless it could be easily hacked out of your body. Today, those numbers are radically different. 

Is chemo worth it? YES. Even if I am not "cured", chemo will give me beautiful days with my friends and family. It can potentially give me years to enjoy them that I would have not otherwise had. Even if I were to someday choose to stop, I have lived almost a year from my diagnosis because of treatment.

People want everything given to them at no price and with no effort. People think everything has to be pretty and painless...that the cure is conveniently at the bottom of a maple syrup bottle or a bag of carrots. Do people do this for other conditions? Fertility treatments are painful, surgery is painful, drugs have side effects, organ transplants, the list goes on. We shouldn't be judged because we put away our cynicism and put faith in our doctors.

Chemo is a jerk sometimes, but he is my friend. If this is the price I pay for another day, I do it gladly. Do what you please with your body, but don't make me feel like I'm the idiot here because I want to live.

Type "Amen" if You Like Exploiting A Sick Person

Facebook. My friend for the last...13 years? It has become more of a content feed than anything else. I like to check out what people post- funny videos, cat pics, a meme or two. It can also be infuriating. "What did this jerk say about gun control / abortion / transsexuals in toilets?! Ohh he's gonna get it!"

But the thing that is bugging me to no end are these "Type Amen" posts. They post pics of extremely sick adults and children and read "Type Amen" or "1 like = 1 Amen" and idiots comply. Don't get me wrong, this isn't a rant against prayer in any way. Even as an agnostic, I see prayer as a sweet and caring gesture on behalf of the believer. But, typing 4 letters out is NOT a genuine prayer. It serves in no way but to make the typer feel warm and fuzzy for doing absolutely NOTHING. But, that's just the tip of this iceberg...

 It feels exploitative. The text never tells you who the person is, what they are suffering from, no context to the struggle they are experiencing. No true awareness. Just a startling photo of a person at their most vulnerable. If I ever got to such a state, I would be furious to know a photo of me was being circulated blindly. And circulate blindly it will.

But it's cute and sweet you say. Ohhh, no its not. Check out this article on CNN that discuses not only how one family has to deal with the constant circulation of their daughters pic without their consent (which is old btw, and the girl is now cancer-free) but also from the fact that these posts are SCAMS that can make scammers money. That's right, all your stupid likes are exploiting a poor person and making some asshole somewhere rich.

In researching this I am finding tons of stories of families devastated at having their loved ones photos stolen to create these meme's. Is that really what you want to contribute to?

At first I thought, these photos don't help the person. I'd say "Post a GoFundMe for them, spread information about the condition, etc." but now I see this is much worst than just that. These photos are being stolen and used by unscrupulous people. Manipulating the sick for their own gain- it is disgusting and I for one, want to see this stop.

Next time you see one of these things - hit report. And if you want to pray, do it for real.

GoFundMe

So far the GoFundMe has been an amazing help with medical bills and supplies. I appreciate all of those who have donated, however small. No one in this world is entitled to anything, so I take this as another little sign of love, support, and how awesome people are!

https://www.gofundme.com/45aa7tpw

I try to share other GoFundMe campaigns now whenever I can. It really makes a big difference.