And Apply the Snake Oil Liberally on Your Colon....

Hearing about amazing remedies is common place, and easy to tune out usually, but when you have an illness- miracle cures come out from the woodwork from all directions. With cancer especially, whose treatment is universally known to be long, difficult, ugly, the potency of these claims is even stronger.

"There is a tea in the mountains of Venezuela..."
"All you have to do is eat 20 pounds of raw juiced vegetables a day, along with a coffee enema!"
"Eating up to 70 live beetles a day can cure cancer."
"Eating Dandelions cures cancer.
"Injecting Baking Soda into your bloodstream cures cancer."

The list literally goes on and I have heard all of these, and more, as viable treatment options.

Don't get me wrong, I am not saying that healthy eating doesn't help in recovery, or that the natural world doesn't yield curative powers. Pirates would have had a much better quality of life with just a handful of lemons. I mean, majority of our medicine originated there in some form or another before being harnessed into pills and such. That is not my argument.

My father told me that while his former girlfriend had cancer, they were given a glass jar with moldy bread and beetles inside. You had to eat +1 beetle everyday, until you got to 70 beetles on a day, and then you were cured! He said mixing them into ice cream made it easier to get down. I know how that cure ended, but let's not discuss it. 

The danger behind these supposed treatments are that they are treated as magic bullets, panacea. They tell you  "Chemo is poison! It's expensive and the doctors are getting rich of you!" They offer to be instantly cured by something innocuous, cheap, painless, and guaranteed! You know the saying though, if it's too good to be true, it probably is. A healthy, balanced dose of skepticism is needed when evaluating these claims. You can eat all the dandelions you damn please, but if you are foregoing treatment to do so- I have a feeling dandelions will be sprouting 6 feet from you in a short time.

Sure, people going through conventional treatment die. But, the lady drinking tea from a mountain in Venezuela and rubbing goat excrement on her stomach- I am going to assume that risk goes up. By a lot. That is why these notions are serious and to be considered dangerous.


There is always a paranoia that cancer treatments are being kept hidden by the faceless pharmaceutical companies and doctors. How would anyone keep that secret? How cynical do you have to be to assume every single person who does research, every single oncologist, all of they are greedy assholes that laugh at you as you wither away? At the same time, people let some crazy doctor in Italy inject them with baking soda (who, btw, believes cancer is a fungus!?) Why trust him? Because everyone wants an painless absolute. People want to be "in" on the fight between "us" and "them", whoever "them" is.

These doctors think your debilitating nausea is hilarious, and profitable.

Also, cancer is a constellation of diseases, not one. There is no absolute singular cure for cancer. If you have a genetic etiology, carrots aren't gonna fix that hot mess. They were supposed to make my eyesight better, and I am suspect of even that as I squint at my screen.

These alternative treatments always lack sources and are often anecdotal in nature. Some guy's aunt who had generic cancer ate nothing but radishes for 20 days and all the tumors were gone!!! The people behind these supposed therapies can even set up official sounding institutes and have "doctors"- but their claims don't have studies to support them, lack adequate tracking of progress, and rely on the few that survive without ever discussing how many didn't. If dandelions go through rigorous testing tomorrow and show they are the real deal, well, hallelujah.

My mom says to me "But its natural!" So what? So is hemlock. Doesn't mean it will help me. If anything, sometimes the supposed cure can be just as deadly. On researching the Gerson therapy at my mother's request, I discovered that daily coffee enemas have caused the death of over 7 people to date. Not a lot, but I for one don't want to die from a jittery colon.

Next time you read some article about the new wonder therapy for X disease, consider:
- Is it presented as a easy, painless alternative?
- Is it a cheap and commonplace ingredient? 
- Is it predicated on a nearly sociopathic distrust of the entire medical establishment?
- Can it cure your gout, arthritis, and amputated leg all at once?
- Is it an Italian doctor with a shaky understanding of what he's trying to "cure"?

And then, after you consider all these points, do your friends and relatives a favor and do not share.

How to Fall Apart and Look Sexy Doing it

"You look SO GOOOOD."

I hear that a lot these days. I appreciate it, don't get me wrong, and accept it with a shy giggle. But I can hear the genuine surprise lingering within the compliment. I just don't fit what people imagine when they imagine the cancer patient. You know the stereotyped look: The bald head, skeletal look, heartbreaking eyes of a Auschwitz prisoner.

The truth is, that doesn't happen to everyone (I mean...it does, can, but it's not an absolute). The nurse at my treatment center tells me that is a very common misconception that patients go through- battling the expectations people hold of what cancer "looks like." I can plainly see how this disease has changed my body (and feel it). This is "the worst diet plan ever" I declare with a laugh when the subject comes up.

I went to the holiday party at work and did my best to look nice. Not for everyone else but myself. To prove to myself that I could still be seen as a normal, smiling, happy person and not walking tumors, skinny limbs, a bag...it was nice to find that confidence again. And maybe that is what surprises people, how you can seem genuinely happy in what is the perceived face of doom?

I wonder if people don't see it, does it seem like I am not really dealing with anything at all? It's a paradox I can't wrap my head around: I want to be seen as strong, happy, and coping well, at the same time I don't want to pretend nothing ever gets to me.

Not all cancer patients have the same side effects. Remember that. I don't have nausea really, but drinking even room temperature water can be very painful most days. Reaching into the fridge or walking outside on a cold day can be very painful. I can't eat a salad like anyone else in the world. I don't have the strength to open a stupid Jello cup. No one imagines these limitations exist. Never assume what someone is going through, because every disease and person is unique.

My best friend, Angie, introduced me to the concept of invisible disabilities. I understood the impact when I was diagnosed with epilepsy. I ran into a lot of misconceptions and distrust because what I had wasn't clear and always visible to others. My seizures weren't the fall on the floor, bite your tongue type...and so it was perceived as having less of an impact on my life, as mental illness, as demonic possession! Because what people saw didn't match their perception of the disease, I was often met with hurtful (and potentially- physically dangerous) perceptions that were hard to overcome. I think that fear has carried over to my current situation, irrationally or not- I don't know.

I am happy I look good. I like the compliments. Just don't blow my cover by asking me to open up your Jello.

How to Terrify Children: 101

We lock eyes.

This adorable little girl with tiny cornrows and colorful plastic clips, her face becomes crunched in crushing consternation as I drive by in a motorized shopping cart at an injured snails pace.

You see, I am very slow sometimes and fatigue can keep me from the grocery store. My mother makes me take the motorized shopping cart, against my vanity, but it does help me feel included. This is my first day, and I can't get used to turning, maneuvering, feeling like any moment I will run over toes and knock down elaborately stacked displays of canned peas. So, I barely press the go button, and I *put put put* down the aisles.

This little girl of maybe four, sits in a shopping cart outfitted with a racing car and flame details, turning the wheel, and racing the frozen turkeys. And then there's me...*Put put put*. Around her cart.

"WHY YOU SO SLOW?!" she belts out.
"Excuse me?"
"YOU SO SLOW!" It's no longer a question, but an accusation.
"I don't want to run anyone over." I am now twisting my body to justify myself to a four year old as I drive .01 mph around a corner.

For a kid in a shopping cart who can't move on their volition, this kid can throw serious shade.

This was the only time I had a serious interaction, but I notice kids now. I notice other people. When I go out now, you can tell something is going on. I wear baggy clothes to hide my swollen belly and colostomy. I wear a mask to protect me from infections and colds. I wear a hat and gloves because the cold can bother me. Some days I have a tube snaking out of my chest into a slung chemo bag. I look like a skinny, withering woman under all the accouterments of Sick Chic.

Little kids stare as they walk by. Grown people make nervous eye contact with me. I try to smile and be less scary, but they can't see it.

We went to see Body Worlds at the museum here because I was itching to go out after the surgery. My husband and brother took turns wheeling me about the exhibit. I enjoyed it, but was so painfully aware of how uncomfortable my presence probably was. I did see a preserved slice of liver with cancer- which was simultaneously cool and uncomfortable.

Last week, I got my hair cut. The lady in the seat next to me said nothing, but once I started talking to her stylist she picked up the courage to talk to me.

"Why do you wear the mask? Do you not like certain odors...or...?" (Odd notion to me.)
"I have colon cancer."
"Oh."
Her stylist, which I'm friendly with, jokingly says "I hope its not contagious!"
"Only if I rub my colon directly on you."

You want to go out. Rejoin society. Be normal, but people's looks remind you that you are not "one of them" any longer. Something is slightly off. Someday's I find myself with the weird wish that I had lost my hair, since its like short-hand that I'm not contagious or something.

I saw other people at the mall with wheelchairs, medical stuff, visible disabilities...and I can't imagine what they go through when I get this many looks with just a silly surgical mask on. I can't fix adults, but if you have kids...maybe explain to them that other people have wheelchairs, breathing tubes, and all sorts of medical equipment stuck to them. They aren't scary or weird. They just happen to be people who need these things to help them. Its seems like an invaluable conversation to me, so they treat others as they should, and god forbid, if they are facing that situation someday themselves.

Yesterday, I found some tight leggings I bought at Disneyworld that fit well. Put some eye shadow on, my favorite boots (with calves swimming in them)...and for the first time in a long time I felt "cute" again. I felt pretty normal despite the mask and I was strong enough to make it from one end of the mall to the other. So when the little girl wearing the fairy wings was dragged past me, eyes huge and locked on me, mouth agape, I just laughed about it.

The Bionic Woman: Whats a Port?

Last time the nurse accessed my port I told her that oncology nurses were like sailors. She asked why, and I responded "...Because they are always at a different port."

What is a port? When I was told I would receive one I had no idea what it would look like or what living with it would entail.

Chemotherapy can cause the veins to shrink and recede with time, having a port allows for easy access (both in drawing blood out and putting drugs in) and keeps you from turning into a human pin cushion. Running chemo directly through smaller veins can also be very irritating and damaging, so running chemo directly into larger veins helps.

Now, there are lots of models of ports and also alternatives to it, like a PICC line (peripherally inserted central catheter) and a central line. Length and frequency of treatment seems to determine what method is utilized (although, I suppose other considerations might be present), since a PICC line is more apt for shorter treatment cycles and central lines more apt for frequent access. A PICC line is inserted by a trained nurse, into the arm, and it can remain aprox. for 6-12 months.

For both the PICC and central lines, the access point is outside the body and requires more care. A port on the other hand, is surgically implanted totally beneath the skin, needs minimal care, and can remain for years (or until the silicone septum wears out).

For this post, I will focus on the port. (Later on, I will also discuss my pump that I take home after chemo.)

Advantages of a Port

Besides a longer length of time, the port has other advantages. Since it sits completely under the skin it is less susceptible to infection and requires little maintenance by the patient. Also, the port allows for fluid to enter quickly into the body as you have a larger line. 

Surgery

My surgery was early in the morning. I could not eat or drink after midnight or wear nail polish, lotion on my skin, and makeup. Why? Body lotion makes it difficult to properly clean your skin (you know, your frenemy, bacteria!), nail polish interferes with the monitors that the anesthesiologist use- and blue nail beds are a sign that sufficient oxygen is lacking. As for makeup...I dunno, its distracting to the surgeon to operate on pretty ladies?

I went in, got sleepy drugs, and when I woke up again I was...a BIONIC WOMAN. I was like Iron Man, with a cool titanium thing in my chest. Unfortunately, it does not glow, which I feel is quite a missed opportunity.

I had no sutures, instead they put a purple superglue on that falls off after the wound heals. It ached alot- like someone had punched me in the shoulder. Sleeping on my side, I could tell a foreign object was poking me, but this faded after less than a month and now I barely notice it. The scar is about two inches long, and one of these days I'll draw some eyes on it to make a bored smiley face.

Ok, but...what is it?

Case courtesy of Dr Henry Knipe, Radiopaedia.org, rID: 26966

My port is a Smart Port (see what it looks like there) which is made by a medical company called AngioDynamics, and it sits below my left collarbone.

I can only describe it as a titanium chamber with a silicone entry called a septum. It is accessed by a special needle that pierces the skin, then pierces the silicone, into a chamber that in turn leads to a catheter threaded into the superior vena cava. The silicone can be pierced many times before weakening, and it "heals" when the needle is removed.




Living with a Port

As much as my (two) surgeries for the port sucked (the second one to fix a kinking of the catheter line just 4 days later) I really appreciate this little thing. It doesn't hurt to access (a teeny prick!), allows me to get chemo, avoids bruised veins on my arm, and it really needs no care from me. Except for a little bump on my chest, its not even noticeable. Although...I'm still kinda sad that it doesn't glow like Tony Starks.

Messages of Hope (Part 1): We Are All Going To Die

I really want this to be an inspirational post. Let me see...how do I start this? Oh yes.

We are all going to die.

Just in case you missed the news- you will someday kick the bucket. Push up the daisies. Go to the big golf course in the sky. Shave the pig. (Ok, I made that one up.) It is the inevitable truth. Maybe because I have always been the pensive type, mortality is not something I have ever shied away from contemplating.

It's not a comfortable subject, I know. Hearing a cancer patient talk candidly about death- Hotdog! That sounds like a fun Sunday to me! My family cringes to hear me even obliquely refer to it. "Be positive! It is not going to happen." But positive is overrated, I prefer realistic. To me, that means facing the worst case scenarios calmly and then slathering some optimism and attitude on it for balance. You can't stick your head in the sand- the doctor says 'incurable' and 'eventually the chemo will stop working and you will die from cancer.' - well, how am I not supposed to consider how this makes me feel and what it entails? Why is it so taboo to even discuss? Why does even considering the possibility and it's impact a sign of giving up? Of course, I want to beat the statistics and be cured, but it's foolish to not face it.

We cultivate throughout our lives a story - go to college, get married, have kids, watch them go to college, have grandkids, retire...and die in your sleep like grandma (not kicking and screaming like the passengers in her car, per the hilarious bumper sticker). But that is an illusion. Heart attack, car accident, a freak toaster accident...we have no guarantee whatsoever. Hell, I can get cured from cancer and fall down the stairs the next day. That leads me back to - we will all die.

So, let me get to my paradigm shift: Maybe it doesn't matter how long you live. Maybe what really matters is quality of life. You know all those things that we leave for tomorrow? All the crappy things we allow to control our lives out of fear? The unfinished projects and dreams?

I think, if I was on my deathbed, what would I regret? It isn't the dying itself. Lights out, so what? It would be the regret of not having lived a happy, loving, and productive life in the time I had that would hurt the most. This would be true in 8 months or 80 years.

I want to enjoy my family. My friends. My spouse.

I try to call people more, be more patient, and do little things to make myself and others happy. I try to be productive- I do my artwork and I keep up with my blog. I take pride in the work I do at my job. Tell people that mean alot to me just how much they mean to me, in case they suspected it and need confirmation. I am bolder to make new friends, to be honest, to be appreciative. I reassessed my life and realized that all the things I stressed about weren't big things, that my life is pretty beautiful.

Even through cancer, surgery, the stress...I am so lucky and so loved and I hold that closer to my heart than ever. It's not perfect, I'm not riding an elephant in Indonesia right now or producing an indie movie, but if I croaked tomorrow - I would be proud of my life. If I croak at the age of 90, (product of some hot stripper action and an aging heart) I would be proud of my life.

Don't be afraid of mortality. Don't worry about the end, because dying is a very common problem. We can't change it, so may I suggest, focus on what you can.

--------------------------------------------------------------------------------------------------------------------------

Sidenote: I saw the video below about 8 years ago and I stuck with me. It is from a book written by Timothy Furstnau and read by the performance artist, Vito Acconci (Seedbed, anyone?) It is a very similar concept, a great artsy-fartsy bit.