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.

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.

A Tiny Boat in a Vast Ocean

Sometimes life feels like your out in the middle of an ocean during a storm, just you and your tiny rowboat...and there just went one of the oars. "At least" you think to yourself " I have the other one to knock myself unconscious with." And just like that, the ocean swallows up the other one.

In my case right now its disease, but the ocean is many things to many people. It is financial instability, uncertainty, abuse, it is the limitations of racism and sexism, bigotry, it is fractured families and personal stagnation. We all find ourselves in vast oceans from time to time. And it might seem like a pond to your neighbor, but when your inside it the horizons disappear and you just see water all around.

But, I do find a curious thing happening to me. As the ocean tides climb and toss me from wave to wave, I can still find an odd comfort. I find joy in the tiny cracks of my vessel. The waters might be vast, the sky might be black, but me and my tiny boat endure. I have become proud of it.

I am proud that my body has taken so much and still endured. Last Saturday, I got up and danced at a wedding. I wobble more in my heels now, but I can still do the Twist like no ones business. I am proud that I can still work pretty much full time and contribute. I am lucky to have relative financial stability now that we both work full time- more than I have ever had  in my adult life, even with the medical bills. I am grateful to have the family and friends I do, and discover I have more of both along the way. I have a partner that I know with all my heart is meant for me. All this overjoys me. All this can overshadow the difficulties and make those stupid clumps of cells in me look pretty insignificant in the grand scheme.

So next time your alone in the ocean, look at your tiny vessel and admire it's fine construction. You may be broke, but you have the skills to forge ahead. You may have been hurt, but you are strong enough to heal. You have family, or friends, or the confidence, the skills, and fortitude to help you brave the night. You have perspectives, strengths, and privileges in places you don't even realize.

Floating out there in the storming darkness, you might just spot another tiny oar-less boat out in the distance. You might see a girl, soaked to the bone, and wonder why she is smiling...

Because, my friend, this storm can rage all it wants...but it can't blot out the sun that lives inside me.

On Being a Selfish Jerk

Empathy. I have always considered myself to have some level of empathy. Maybe not above and beyond, but the usual level that strikes a balance somewhere between aloof and Mother Teresa. But like all people, I have quick judgements.

"That person should take better care of themselves"
"You really need to get ask the waiter twenty questions, lady?"
"That guy parking in the handicapped spot doesn't look handicapped."
"That bum needs to get a job."

We all have these thoughts. It is human. And when we have them we are making quick assumptions, instead of analyzing all angles. Why? Because they probably doesn't fit our evolutionary needs to consider how X things affects Mary, Joe, Lupe, and Hubert down the street. We are inherently selfish, and consider things predominantly from our vantage point in  the universe (which I remind you, is not a bad thing, it is just our view out of the narrow window we have available). Only through effort, love, and experience do we get a hint of another view- and usually through the vectors of our family, friends, etc. This is how we develop empathy.

Lately, I realize some of my actions may seem bizarre to strangers, since it lacks context to them. Snap judgements could be made about me which do not reflect reality.

I used to work in a restaurant. People who made twenty substitutions on their dish, asked 50 questions about what was in it, I saw them as picky and petty. And I wasn't alone in this view. But, I go to the restaurant now and ask twenty questions. I can't eat raw fruits or vegetables, and it usually causes confusion because that's not a recognized standard dietary restriction. "It has cilantro, are you allergic to cilantro?" It seems easy to answer "Yes" but then they wont tell me that maybe the sauce has uncooked items in it too. I substitute the side salad, the thing on the side, please don't add this...I have even had the manager come out to clarify my requests.

When I went to the supermarket and rode around on the motorized cart, I was afraid they management would tell me to stop fucking around on it, that people need it. And some days I can walk twice around the mall, and the next week our parking spot in front of the house can feel like a hundred miles. Would I be seen as faking it because my disability is not constant? "I saw her walking around, she's fine."

I used to sit by old people on the train that smelled strongly like pee. I was disgusted. And now, I have a colostomy bag I can't always control. Someone might sit next to me on the wrong day, and maybe I'll smell terrible. And I will know it, feel anxious to get home, feel embarrassed. I feel bad for that person now, I realize they probably have no more control over their bladder than I over my bag.

I abruptly change seats in public when people cough. I don't "look sick", so what must they think?

There is a picture making the rounds of these oranges at Whole Foods. You see it and wonder "what kind of lazy asshole would buy that?"

Its easy to dismiss it, but I have read blogs by people with disabilities who appreciate a peeled orange. They can't enjoy an orange otherwise. And now that I rely on my husband to put on my earrings or open a container because I physically can't, I totally understand. Hell, peel everything in the world.

I can go on. But the point is, I cant walk around with a shirt that says "CANCER!" any more than others can when dealing with mental illness, abuse, other disabilities, etc. Instead, I rely on strangers to consider that I am not a picky, weird, lazy asshole, but that there might be legitimate reasons for my actions. And that makes me wonder about the people of the world I have judged through quick assumptions...who also relied on me.

I can't, from my tiny window in the universe, see the whole story. But I know now beyond a shadow of a doubt, that what I see is an incomplete truth with invisible strings that reach far beyond my knowing. And strangely enough, that might be the most important bit of knowledge there is.

A Fly in Love

This week has been largely...positive. There have been a few stresses - unraveling the bills coming in, fighting insurance, making heads or tails of the binder I keep for it. I swear, there needs to be an app for that! (Note to self: Build app; get rich).

I am on less chemo (not necessarily a victory, even though it might sound like it) but it does afford me somewhat of a respite from side effects. By the Friday after chemo I am usually on the couch in hardcore sleep mode. This time I organized my closet. My hands and feet though have peaked - there are ten ice cubes (or...fingercicles?) attached to me that feel gross (if they feel anything at all), and fail to open bottles, containers, and who have epic battles with buttons.

I went to work most of the week. Being there helps distract me from the weirdness of my life. I feel like I slip back into the world I knew, only everyone is super happy I am there. I try to pretend it just another day and they just really like me.

I tell my husband that my priority is living a normal life. I have started doing my artwork again, reading a good book, pursuing my ambitions. I think the fear that paralyzed us in the beginning begins to wear off and...slowly, we return to doing human things like us humans do. There are still hard times - but I tell my husband my fears and he tells me everything will be ok. And some days, we switch off...I hold him and tell him the same.

There is one thing I will say - and if I may ask permission to get mushy - is that I feel lucky to have Michael as my partner in crime. We all believe our spouse loves us (hopefully) but it's under extreme stress that you really see the raw person at their core. We are very different people, but we share an absurd and obscene sense of humor, a love of building forts out of our couch cushions, and just the right amount of bourgeois sensibilities. I married him pretty soon after we reunited, but I never looked back. Not once.

Fast forward to now. This man gets up every morning and makes me breakfast, opens every jar that may vex me, puts lotion on my hands and feet to stave away chemo's effects, and he kisses the spot where my stupid liver is every night - in hopes that it too will know its loved. The power of love will do what the doctors can't is what we secretly tell ourselves.

My mom's boyfriend told her that he has great respect for him since he found out that my husband helps me with my colostomy bag. My husband furrowed his brow. "I only do what any husband would do. Nothing more." I don't think he realizes that he is not "every husband." Not everyone signs up for "in sickness and in health" even if it was in their vows. In the beginning, I could not even look at my stoma, much less care for it. It felt like some sort of terrible horror movie transformation, like Jeff Goldblum watching himself turning into the fly. Michael would clean it, change it, make sure it was healing...he could look at that giant fly he now had for a wife and tell her she was beautiful. Even now, when he is helping me, I look at him and feelings of love rush through my brain. Feelings of awe, of joy...I see a man that loves me unconditionally.

And being loved makes all the difference to me.

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Our (unofficial) song from when we were kids. They took down the official video but a great song by Maxwell. It's made me think of him for the last 16 years.

Triumph over the Bagel: An Update on my Second Scan

I had my second scan yesterday. I was prepared this time, I guzzled two giant cups of spiked coke like a champ. When I got hooked into the CT Scan, I knew that the warm sensation I was about to experience was definitely not me peeing my pants. At the end, I went and devoured an omelette. All the while, I checked my work email. I got this shit down.

My husband and I went this morning to find out the results. If you read my last post, you know I wasn't all cool like cucumbers.

I had a 15% shrinkage. In my head I was a bit bummed, hoping for more, but our doctor made sure to assure us this was good. Early scans will show big progress, later scans are more of a slow and steady game. We will continue with a modified regimen until progress halts or reverses. There is a path ahead, but it's unclear, it twisty and turny. We just don't know what lays ahead till we get there.

To give you an idea, my largest tumor starting out was 8.2 x 10.3 cm. 10 cm is about the size of a freaking bagel in width. I had a tumor all around slightly larger than a baseball! And that is only one of several. Ewww. That same one is now about 7.6 x 6.3 cm (the diameter of a soda can). All the others are currently the size of a banana slice. (I am referencing a website on Cervical Dilation.)

I know its good but I am impatient. I just got to keep moving ahead. Everything is normal. I need for it to be. At the same time I yearn for the extraordinary. Can I keep my job and simultaneously live on a Caribbean island?

I am trying to keep up with work, my art, life.

On a brighter note, I picked up a new book for the first time in a long time. Mary Roach writes a weird science book and I love it. She first wrote Stiff: The Curious Lives of Human Cadavers which detailed the weird things that cadavers have been subjected to through history (for example, ballistics testing for the military in the days before ballistics jelly was invented - spoiler: it's a terrible test subject, or practice for plastic surgeons). This book won my loyalty, science is at its best when it honestly indulges your worst questions.

Her new book was Gulp: Adventures in the Alimentary Canal. This book covered the science of saliva and fart research, megacolons (Elvis died from constipation caused by a colon three times the size of a normal persons...the gut that he had in his late performances were not from eating fried peanut butter sandwiches. In fact, he could loose 20 lbs between performances by pooping alone. He died trying to do just that) and more intestinal oddities.


My favorite part? The colon cancer ribbon is a Navy Blue color. When I first found this out, I laughed that this was a missed opportunity to make it brown. Apparently, according to the book, it had been at the start (as bladder cancer was yellow) but patients complained that it was insensitive. Clearly I am not a majority.

Facing the Monster: An Honest Exercise in Being Un-Positive

I felt that momentary weightlessness that lets you know your air bound. I giggled, held on to my husband, and with a look, demanded he look at the airplane window as well to witness the earth going small, miniaturizing, people becoming ants. An hour later, I watched tiny ships make their way around a tiny Lady Liberty. From the air, New York was a dense landscape of buildings.

We were visiting my aunt and uncle at their new home in Long Island. It was, as usual, a beautiful and cozy creature, with tasteful furniture and a touch of Ukrainian accoutrements. To a lazy body, it was hard to leave the comfort of fireplaces and good cheese in favor of walking around freezing city streets.

On Saturday we saw my cousins new play, Hyena. It was genuinely fascinating, hard to pin down in words...and the talk of the house since. I was very proud of her and her accomplishment. Vicariously, I remembered the feeling of being young and wanting to eat the world, make it yours, to create.

It was a welcome respite to being home.

I haven't written in a bit, I have thought of it but...I have a second scan coming up on the 5th. It will determine what options will be available to me moving forward. A drug is being taken out of my cocktail, and next steps are complicated. One option can knock another out, all carry risks, there is little clarity from where I stand. This fact brings out the anxiety, the fear, the instability of a woman trying to remain positive as she is torn from the ground by a whirlwind. I have days of long calm, punctuated by an engulfing terror. It makes it hard to write witty bits.

I asked the doctor about the people I have heard- who live 10 or 15 years treating cancer as a chronic condition. It was a mistake, as he seems to wince. To the medical establishment, the hourglass is marked in mere months. I can't condense a lifetime into such a small place. So I negotiate with the universe - give me remission...give me 10 years...give me 5...give me one.

My husband does not read my blog- which is best. I think my honesty would be difficult for him. But it's hard to hear, I know. I showed my sadness to my mom, and I saw it just made things worst. I talk to my brother, he is stronger- but I am sure it is no easier. It's hard to convey these thoughts without feeling your swallowing the world. So you say nothing and slowly, you isolate yourself without realizing it.

Waiting the scan, you become hyperaware of little aches and pains. You become sensitive and cry at commercials. At work I make dark jokes about them having to find a replacement soon and that my co-workers terrible files structures are what gave me cancer. Maybe I make too many jokes, but they are my way of dealing with the streams of thoughts that haunt me. My jokes aren't jokes, I wonder often of the disrepair that I would leave behind if something happened.

Sweet moments are interrupted by terrible thoughts. Happiness is damped by the stray "What will happen to my stuff? Will my family have to sift through it all? I hope I have nothing embarrassing laying around...I wish I had finished this thing, that thing." These thoughts float by casually, non-chalantly, and are often irrelevant. They seep out of that tiny dark hole in my heart that just cannot be blotted out by all the positive thoughts in the world.

I still have hopes to reach what the doctors term NED (No evidence of disease). It's not remission exactly, because liver metastasis has like an 80% recurrence rate....but it gives me hope that I could spend a few years living normally...and maybe, beating those odds.

Despite this hope, my brain twists pretzels out of the future.  I don't want to give the impression I have given up, I haven't, but I do think about all the possible outcomes. I think, it tries to reconcile itself with death as a way of gaining the upper hand. It wants to feel as if, no matter the outcome, I don't let it win. What bigger monster is there than the darkness? If I can stare him in the face, say "I'm not scared of you- you can't hurt me" then I can stop worrying about when or if he will come.

Sometimes being strong is facing those fears inside you. It's scary, scary as shit, but it has to be done.

So everyday I tell it "I am not scared, you can't hurt me" and everytime I stutter, close my eyes, tremble, doubt, but I think I am getting better at it...I am getting better at it.

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I keep listening to this song. I know Mike hates that I listen to it, but in some weird way, it gives me peace.

Ice Cream Hurts Like a Bitch

"How are you doing?"

I get that question a lot and I, honestly, I have no idea how to respond to it anymore. I am never sure if the person asking wants a polite answer ("Good...good.") or a real answer (My hands are numb, I taste metal, and some days I experience highs and lows at breakneck speeds.) It is tricky social waters I try to deftly navigate.

How am I really? Honestly, I am in a weird in-between sort of purgatory. The doctor tells me my symptoms are on the milder end of the spectrum. This kicks my empathy into gear, as I imagine what the deeper rings of hell must look like and the souls lost wherein. And really, these symptoms do feel like bizarre punishments you would find in Dante's Inferno.

"At the 7th circle, your hands and feet will be on fire, ice cream will hurt your mouth (but still be delicious), and ants will fly out of your rectum! Muahaha!"

Which, if I can take a detour, dear reader, I will let you know that ice cream, physically, literally, hurts me. And I still can't stop eating it. I love Drumsticks - so imagine - I have someone remove it from the fridge, wrap it in a protective paper towel so I can hold it, and I take tiny bites. You know the intense sting of super strong minty mouthmash? Imagine a chocolate version of that feeling. How do dieters stand a chance?!

Where was I? Oh yes. Purgatory...

Aside from the hands, the bag, the ever-present discomfort...I am happy. I love my family, friends, my husband. I feel intense and real love. I feel supported. Lucky even. I realize that people go their entire lives with health and wealth, and still yearn to have what I have. But sometimes, I waiver...

This next month I get a second scan. It is a milestone and it kicks up a lot of anxiety and fear into my world. It is both hope and the dancing of hell flames on my door. If it goes well, it opens up other options for me, such as chemo-embolization. This is where they run a catheter from a vein in your leg up to your liver and then pump in some chemo. Fun, no?

Now, if the scan doesn't show great progress...I have options of maintenance. The word terrifies me because the possibility of remission slides away from the landscape. Like in those time travel movies, you see yourself fade from photographs that haven't been taken yet.

I have days where I worry, I break down and cry at small, insignificant things. Your optimism and fear collide and swirl into strange beasts. How can I feel so lucky and so damned at the same time? I laugh at death, I deny it, defy it, but I cannot pretend that it doesn't ever sting. I don't want to imagine my husband coming home to an empty house, an empty bed, and being alone. It breaks my heart.

It is surreal. It is complex...trying to express the weird slice of life I am in. Trying to express what I go through and still avoid pity, avoid being consumed or consuming others. That is why this blog helps me. It helps me avoid the awkward conversation, but lets me get all of it out.

As I think about it- maybe life is like ice cream, regardless of how painful it can be - I'm always happy to have it. So, I guess, I can say I'm pretty good.

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Bonus: A Real Conversation Between My Mother and I

Mom: How did you sleep?
Me: Ok, I had a weird dream that I shit myself.
Mom: Oh, when you dream about poop it means you will come into money!
Me: No, I'm pretty sure it just means I want to shit out of my butt again.

Take Your Tumors to the Movies: Deadpool

I love going to the movies. I sill believe in the magic of film and cinema, and the movies is a small joy that is there for me even when I feel at my worst. My husband and I bring up the armrest and hold hands the whole time.

The thing about the movies is that before being diagnosed, the depiction of cancer in movies wasn't something I thought of often. It was there in stories, as passing plot points, but something changes when you have it...you become hyper-aware of its use as a plot device. It is everywhere. I mean, everywhere. It is almost shorthand for "the worst possible thing in the world happened to this character" so you can accept why they help / kill / love / others. It's hard to explain since I don't remember all instances, but rest assured, the second they mention it my husband throws his hands in the air. He hates the reminder.

I saw Deadpool this weekend, knowing full well this was a big plot point, but it looked like crazy fun. I wasn't sure how they would treat it in a superhero movie and was kinda curious, kinda apprehensive. Usually, the movie cancer patient is a sad, withering, one-dimensional person - everyone talks real low, cries alot, soft-focus shots...you know the drill. I think of Cloe from Fight Club.

Deadpool was...surprisingly poignant. Yes, for a movies that includes insane violence and the words "...sandpaper dildo", it was surprisingly poignant on this front. I couldn't stop thinking about it at the end. Ryan Reynolds scenes with his girlfriend felt very real to my experience because they were multidimensional - there was fear, pain, and humor, and love, hope, all swirling around together. There was the apprehension of how to properly deal with a diagnosis that gives you no hope. He says at one point, it's not what it does to you , it what it does to those that love you. I have said the same thing, I can handle what it does to me- but seeing what it does to those that love me, that is the hardest part. And the fact that Deadpool got that, made me oddly happy. Seeing someone on screen handling late stage cancer with such a range of emotions, including humor, was nice.

Vague Spoiler Alert: So he gets promised a cure that will also make him superhuman. He willingly undergoes tremendous pain in the hopes of being cured, so he can come home to the woman he loves. It ends in fire, and we see him emerge from the ashes. Cured, but changed. Scarred from the journey. I teared up, because it felt like such an analogy. I don't care what hell I have to go through, I will do it if it just gives me the chance.

And if I can be a wise-cracking superhero at the end, even better.

Check out the PSA on early cancer detection from Deadpool. There's one for the fellas, and one for the ladies.

The Blog Where I Talk About Sex

I hope I don't make too many cheeks red, but I want to talk about sex. Yes, I said it! SEX.

Sex and intimacy are important topics, and they are often ignored in very important contexts because it simply not polite conversation. Not having those conversations though can have a real impact on people's lives- so I prefer to giggle nervously but just move forward.

Disability and illness are rarely included in the conversations we do have. We assume, falsely, that those facing medical issues, or those that are disabled, are asexual. Society has a way of mentally castrating people it no longer considers generally desirable. This is a difficult stigma, and surely a person who is just at the start of hardship might assume this is the role they must play.

A few years ago I bought my friend a book about sex and disability because she was rehabilitation counselor and I thought she would find it interesting, and potentially be helpful to another someday. While it sat in my house, waiting to be gift-wrapped, I looked through it. One diagram showed how to put a condom over a catheter. I was kinda shocked and a bit grossed out at first, but quickly realized that was the reaction most of us carry around and it is, plainly wrong. I read about how people with spinal cord injuries find that new erogenous zones develop when they lose the ability to feel below the waist. An elbow, a spot on their neck, they can cause feelings of orgasm when a vibrator is placed to them. This information was fascinating to me, and eye-opening. Why should anyone be deprived of basic pleasure and intimacy? Why should we assume that a person going through disability or illness isn't capable, or desires, of those most basic of human emotions and needs?

But internalizing that when you are that person is harder because that stigma is reflected everywhere.

When I first received the colostomy it was a blow to my self-image. I wanted to continue life as it was, but when my husband looked at me I assumed that he just saw the clear bag and its contents...saw cancer and sadness. I couldn't imagine anyone could find beauty there or desire that, even though rationally I knew better.

During one of my chemo's, the nurse navigator came over and - with a whisper - asked if I was interested in a book about colostomies and sex. I laughed, but she was genuinely afraid of offending me. I welcomed it though, no one else broaches the subject and I had so many questions and insecurities in my head. The book was It's in the Bag and Under the Cover by Brenda Elsagher. More than anything truly sexy, it was a wonderful collection of couples telling their stories of acceptance. Not only within established relationships, but new too. 

Just a week prior I had read a list of "Worst 1st Dates" and one was "A girl told me she had a colostomy." 

It isn't about sex really at the end of the day. It's about acceptance, of intimacy, cuddling with someone and feeling loved completely. It's finding a partner who can see past disability or illness and see the beauty in you.

The Virtues of Being An Old Fart

My mother looks in the mirror and whines about her gray roots. She squints at the wrinkles, and studies her face like a topographical map.

"I'm ooooold..." It's both a statement and a complaint against time. She punctuates it a second time with: "Ceci, I'm old." Her tone makes it seem as if she is revealing a new fact to me.

This makes me think about the people I see around me at chemo. I am a rarity, you see. People my age don't get seen very often in the GI clinic because we just don't get colon cancer as often. Part of me is suspicious that this elicits a bit more attention from nurses, a bit more encouragement, a bit more pity because I am "so young". They say it like that, they stretch it out and let it linger in the air.

Everyone around me looks about 50-80 and I must be honest, dear reader...that ugly part of my soul finds a tinge of jealousy. A tiny seed of anger and pettiness. It's terrible, I know, but I can't help but feel it creep into my heart. All I can do is acknowledge it, fight it back and swallow it down. I think of them raising their family, buying a house, going on cheesy cruises to the Bahamas, celebrating 30 years with their spouse, getting that promotion at work...they had life. Chances.

When I see grey hair, I see a life lived. I see stretch marks and wrinkles, I see a body that went places. I see creaky bones and stiff fingers, I imagine they did something. Whether they made mistakes or took those chances, I don't know- but they had them. And right now, it's what I want most. It's the only reason to fight. I guess, I am simply no longer interested in the cult of youth.

Your grey hair, those 30 extra pounds, those stretch marks...next time you lament having gotten old...remember that someone out there wants nothing more than that. Be proud of your birthdays, of your memories, of the people you have known, and all the facets and versions of yourself that you got to be.

It is a beautiful and truly envious thing.

Defiance and Unicorn Farts: An Update

For more than I month, I have known that a scan would be coming up to evaluate how treatment was working. I was very anxious during this time, as my head raced between all the possibilities. It could get better, worst, stay the same...

I can try to remain positive and upbeat, but I can't outright control what my body actually does. I have tried. In the quite still of the night, when nothing is around but your thoughts...I contemplate what this all entails, my future, those I love, and often find myself indulging bizarre notions.

I imagine...the white blood cells in my body all taking attention, being directed to my liver, and destroying the tumors with a flash of white light, sparkles, and the *ting* of a fairy's wand. It isn't something beautiful or mystical in a zen kinda-way, it looks more like those 1950's commercials for toothpaste or floor cleaner, where a little animation flashes and the housewife beams at her so shiny linoleum floors.

"Mr. Clean can make even the ugliest livers sparkle again!"

The nurses tried to prepare me to expect no change. The fact that it wasn't growing was a triumph in itself. But that wasn't good enough for me. It felt like the longer I fought this, the lower my chances. I wanted this out NOW. 5% shrinkage? 10%? 80%! My mind teetered between the meager and the impossible in a matter of seconds.

When we started, I was informed I had a KRAS mutation: in simple terms this meant my tumors would be somewhat resistant to chemo. I was told surgery would not be possible. Every bit of news I got during the initial prognosis felt like another nail in the literal coffin.

At that point, I committed myself to defying them. It wasn't that I mistrusted the doctors, but I knew they could only speculate what my outcome was against the statistics. Someone wins the lottery despite the crazy odds, but you got to play to win, no? I refused to ask for odds when I spoke to the doctor (I have seen them online without meaning to, ugh) but he spoke his words slowly: "possible....but a long-shot" and nodded as if to add "You understand...no?"

Pardon the French but... Fuuuucccck that! I got a husband to love, family to spend time with, and a goddamn elephant to ride in Indonesia or India.

This elephant right here...mine. I'll call him Tiny.

Thursday morning was my CT scan. If you have never had one, its a big donut that whirls around you and takes pictures of your guts. They inject a contrast in you that makes it feel like lava is flowing through you and they warn you that you will feel like your pissing yourself, but no worries, your not. Your swimsuit area is on fire, but no worries.

The doctor saw us that same day.

1/3rd he said.
Almost 30 percent smaller.

One of the largest tumors had gone down by inches! Such a dramatic response in only three months in was a great sign. He said that in two months I have another cycle and this would determine if I could potentially go into surgery for a liver resection. Or, we could do an ablation and fry or freeze them. (The caveat though, is that more than six months of chemo makes you a bad candidate for surgery, but it's not necessarily impossible.)

You have to understand:
 I was told that surgery was my only option for a "cure".
And I was told it wasn't possible.
And here we were, talking about surgery.

We were ecstatic. I'm not out of the woods obviously, and I have no guarantee that in two months surgery will get a green light, but having proof that things can change was a revelation. It no longer felt like hope was build from a foundation of pure defiance and unicorn farts, but had a real medical possibility. All the sucky chemo days, they were doing something. Progress existed and so did good news.

Finally, my linoleum floors are looking much brighter.

Those That Care for You

When sickness rears it's head, you really become aware of how much people love you. Your family, friends, and sometimes even strangers, rally around to send their love and well-wishes. But the caretaker is indeed the one that bears the brunt. The caretaker is there to make sure you got your meds, your comfortable, your eating, you can reach the remote control when it's like...just...rigghhht... there.

My husband, mother, and brother help me immensely.

My mother and brother take turns coming up for two weeks at a time. They leave their lives to take me to chemo, they do the grocery shopping with me and cook, help clean up. But beyond the tasks, they just provide much needed company when my husband goes to work (and a bit of peace of mind for him.) Each of them has their super-power too. My mom is positive and sweet, always looking to organize everything to be easier (even if I really don't want the black dresser in my closet and yes, I am planning to put more hangers in there, and please don't re-organize my wardrobe).

My brother doesn't ever wake up in time to make breakfast, but he has long, candid talks with me about the dark and ugly things that swirl in your head during these times. Getting those things out is cheap therapy, and his squeaky "I love you, sister!" is all I need some days to smile. When I was in the hospital, my brother spent long days and nights listening to my drug-induced rambling, handing me juice boxes, and even walking me to the bathroom and holding me steady. He did all of it with all the love and patience in the world.

My husband has endured the most though, he is here with me every day and night. He has to face the physical challenges, my emotions, as well as his. There are so many little things he keeps track of: He keeps an alarm on his phone to make sure I am eating consistently, he massages my hands and feet every day in the hopes it will keep the nerve damage away, he tests the water temperature before I can wash my hands so it doesn't hurt, and makes sure I take my anti-nausea pill exactly every 8 hours. He wakes up at 2 in the morning, pill and water in hand, to be sure I get it. At the hospital, when they gave me that jerk of a stoma, the ostomy nurse came in to teach us how to care for it. I remember how he asked all the questions, made sure he understood, and told me " Don't worry, I will always do this. You don't have to worry about it for as long as you have it." Every time he helps me with it, I feel tremendous gratitude that he can both help me deal with it and simultaneously, look past it. I wish they had a "Love Is" that said "Love is cleaning your spouses poop."

That's alot of poop.

The people that care for loved ones during illness, they need just as much love and support as the person with the illness. It takes a lot of energy, strength, to selflessly give oneself over to the needs of another. To see them suffer and feel the impotence of not being able to fully help. I understand this, and it's a constant reminder that every glass of water handed to me is an act of love.

As I said at the start, friends, family, and even strangers, have made an impact. From chicken soup, to cards, GoFundMe donations, care packages with helpful things, and just plain understanding...all these things show that people care. And that makes such a tremendous difference.

The Magic Yarn Project

I just came across an super cute initiative to provide Princess wigs to little girls who are currently undergoing cancer treatment. The wigs are made of yarn, adorned with flowers and glitter, and resemble each little girls favorite Disney Princess. I absolutely love how these gals are using their creativity to bring a little brightness into these lives.

I used to routinely donate my hair to Locks of Love since I knew someone out there would care about it more than I did. Unfortunately, it wasn't long enough when I cut it this last time- so I made a small contribution to the Magic Yarn Project instead, and I think you should too!

The money raised covers supplies, or you can donate yarn, and if your the knitting type- they take contributions as well!

Check out their website, donate, or share!
www.themagicyarnproject.com/