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.

If Your Sad and You Know It, Clap Your Hands

I try not to hide sadness when I feel it. I certainly didn't on my last post. It's because I want this to be an honest place. Pretending everyday is peaches hurts me, and it hurts others by perpetuating dangerous expectations. I dislike to be called positive, and prefer to be realistic. Realistic with hope firmly held in my hands. I don't deny the whirlwind of feelings inside me, but try (key word: try) to remain centered once I acknowledge them.

"Positive" can become an oppressive force when used recklessly. It asks a lot of human hearts. It's not just me, a lot of cancer patients feel they can't give in to being sad, disappointed, without letting down those around them. Being "positive" can crush you. In extreme cases, showing sadness means that you harm yourself physically.

"Cancer can hear your sad thoughts," we are told by society, "and it will grow stronger from them."

 That pressure doesn't help, that pressure brings tired bodies and tired minds into even darker spaces.

As I usually point out, this extends past cancer. When we go through tough times we feel we have to put on happy masks. We tell ourselves that this protects our family, friends, ourselves...but underneath we fester. Crumbling edifices can't support their own weight, much less others.

In our heads, unspoken pains twist and turn into terrible monsters that don't always reflect reality. Being honest about feelings of insecurity, fear, sadness and disappointment take strength. Sometimes just acknowledging those fears shrivels them up in the light of day.

I feel better today about where I am in treatment.

I have an analogy I think of often, odd...perhaps, but one of those bits that stuck with me from reading random books. I studied philosophy and history throughout my life. One book I read talked about how the devil, in the Old Testament, was still an angel of god. He caused bad things to happen to people to divert them from their path, and through that manifest Gods will. I don't believe in the devil now, but it made me think about how things that look terrible on the surface may not always be so. Tragedy allows new opportunities to present themselves. Stagnation lifts. On the wings of chaos, comes a bit of beauty.

I hold new hope that these new drugs will cause a good response. Had I hung around for another year on the old chemo regime, making small gains, I might come out on the other side with a body too weak and damaged to go into surgery, even if I did had clear margins to resect. After that scan, I assessed my situation, faced my fear and reticence, and decided to start over with the same mindset I had at the beginning: Anticipate for the best response, minimal complications, and forge ahead.

Set me on fire...

...I won't tell you it doesn't hurt, that I don't feel fear, or sadness, but I will not back down until I get this done.

The Iceberg: Update on CT Scan #3

Before the News...

Today was my third CT scan. I knew the drill...guzzle own two contrast-spiked Coka Colas for "breakfast", sit, wait, get jacked into the machine via my port (somedays, I pretend I am a cyborg), and get ready to pee my pants. They warn me every time that I won't, and I joke that I already have.

We have been trying not to break down as scans near. We have planned going out to eat, the movies...productive distraction. We try to mediate expectations. I watch them, like balloons, float into the sky. Aiming steady arrows - pop - pop - pop - to break them down so that they will fall closer to earth. If i don't sacrifice a few, all of them will burst in the end.

My biggest fear, to be honest, is that even "good" is not enough. That 30%, 15% reduction...they won't change my fate. I feel like I am chipping away at an iceberg. I am impatient, I want more, a clear path out.

I think we can all relate to the wait. The anxiety of much needed news. A few simple words that alter the course of your life forever. It is a powerful moment.

...After.

We have assumed that the exercise, the energy, the small liver pains were signs of good progress. Unfortunately, my scan came out worst. We haven't lost a lot of territory, so to speak, but the tumors were "more pronounced" this time, and a lymph node nearby showed marked swelling. We hoped to ride out the current regimen for some time, but no such luck. I am on a new drug now, full dose again, and I can expect the usual menagerie of symptoms, plus uncontrollably shitting my brains out. Yay. *sarcasm*

Luckily, we were able to catch it before much progress was lost, but it does put a dent into your moral. The vague delusions of control that you have...all my balloons sagged and dropped to earth. My husband and I try to deal with the irrational feeling of failure and chaos, wildly bouncing emotions back and forth between us. It's a sad day, I won't lie. But I still hold inside me a feeling of hope, the need to forge ahead. A bump in the road, sure, but at least we have an option available. And talks are starting about testing my tumor for possible future clinical trials.

I sit here, morose perhaps, but in a few days I will try anew to populate my skies with beautiful colors.

Making Babies: On Infertility

I have a scan on Tuesday. I am, as usual, a bit nervous. My mind races with scenarios that get more and more optimistic, and when reality comes we deflate like souffles. The news could be objectively good, but we are impatient people.

Thinking about the doctor today I remembered a conversation we had early on. I can still clearly see him sigh, hesitate, and brace himself.

"There is a high chance," *dramatic pause* "that you will be infertile after treatment." I imagine that he saw a young, 30-something with a husband and assumed this would be a blow. Instead, I threw him off with a breezy "That's ok. What else?"

To me, the news wasn't as devastating as it might be to another woman. Since I was a child, I knew I was not destined to be a mother. It was a decision I had already made a long time before my epilepsy, and now cancer, put in the final nails on that decision. And now, since I had no clear idea of what my future was, the prospect of a child would be almost irresponsible. But I feel a strange relief.

Why? Because people are bizarrely invested in other peoples wombs. I used to get the "When are you having kids?" a lot as a young newly married woman. Telling people I was not interested was more trouble than you imagined. "You'll change your mind." "Children are a blessing!" and the most offensive: "I will pray to God that you change your mind" (I am sure he has better things to do!). It was an uncomfortable and circular conversation.

I feel odd relief in being able to just end the conversation with an "I can't". Although, this makes me think of the women that would grieve this. I wonder, how would I feel if I had been someone who wanted children? The questions and assumptions I have gotten as a child-free person are intrusive, rude, and potentially painful. And this was an active choice I made, so I can have a pretty thick skin on the matter. What if this isn't a choice? I would probably punch a lot of people in the face.

I resent the fact that women are painted as somehow "less than" if we are not able to have a child. I resent that this is a measure of being a "true woman". I resent that I am somehow "selfish". I have been more a mother to my brother than lots of woman who have been able to have their own biological off-spring. I resent that strangers feel they can argue with me on this point as if it were their evolutionary imperative. I resent that those who have not made this choice, as I had, are put through this same crap, and worst.

Will I ever miss my chemo-fried ovaries? In the long run, I don't know. I have, in some ways, made a Faustian bargain. I get to see another day in exchange for my hands (and my art), any semblance of  comfort, some bits of sanity, and ultimately, my fertility as well. At least I can be content with being a wonderful aunt to someone. But...that was my choice and nature just happened to align with it...but choice is everything.

So next time you go to ask a coworker, a stranger, etc. "Are you having more than 1?" or "Why haven't you had one yet? Children are joyous and beautiful!" I would implore you to shut your mouth unless you clearly know this line of questioning is welcomed by that person. Otherwise, your words could be, at best, annoying, and at worst, extremely painful.