How to Survive Stage IV Cancer, Part I

Baby, I know pain is as natural as the rain

I just thought it didn’t rain in California

Baby, I know love isn’t what I thought it was

‘Cause I’ve never known a love like this before ya

Baby, I know dreams tend to crumble at extremes

I just thought our dream would last a little longer

There’s a time, when every man draws a line down in the sand

We’re surviving, we’re still living, are we stronger?

Vampire Weekend, “This Life”

Part I: Realizing that Cancer is Messy, and May Only Get Messier.

Oh, but what a fine mess it is. Forget that picture of the smiling, happy, turbaned woman in the magazine ad with plump limps and rosy cheeks. Cancer is ugly. Cancer is messy. Cancer breaks your heart.

I’m home from yet another hospital stay. This one was because the tumor on my ovary has now encroached upon my kidney area, blocking fluid from traveling down my ureter and into my bladder and causing fluid build-up in the kidney itself. This caused an infection, which revealed itself to me in the form of two days of what I thought was just extra-lethargic chemo recovery, followed by a night of cold sweats and shivers and a 104-degree fever the following morning. On to the ER, and subsequent admittance to the hospital where I had a nephrostomy tube put in and they pumped me with IV antibiotics for 2-3 days before releasing me.

I’ve danced around some of these terms in the past. But today, I think that I will just be more blunt. What this means, friends, is that I get to carry a bag of my urine, drained directly from a tube in my kidney through a tube in my back. How long do I get to carry this around? At a minimum, weeks. Possibly months. They will most likely go in and put in a stent at some point, but first, they want me to discuss with my oncology team ways to reduce the size of the tumor, because that will be the best way toward a more permanent solution. If we can’t find a way to reduce the tumor size within a few months, they may not be able to do the stent and the tube in my back and urine bag become my permanent solution.

So, I now have a bag of urine safety pinned somewhere in my clothes that I get to carry in addition to the illeostomy bag. Oh yeah, that’s the bag that catches my stools as they emerge from a stoma in my abdomen because I no longer have any tubing connecting my small intestines and the other end. And then two days out of every two weeks, I get to add a fanny pack that carries my take-home chemo pump, which pumps poison in through tubing into a huge needle taped to the port in my upper right chest.

But, at least I still have my hair, right? Well.. about that. You haven’t noticed because I started with masses of hair, but I’ve been slowly shedding it into shower drains and hair brushes for months now. I now have a nice bald spot on the back of my head, that I have still been successfully able to hide. But that will likely be all for naught, as a likely change in my upcoming treatment from FOLFOX to FOLFIRI will probably swiftly take care of the rest. Bit by bit, chunk by chunk, the disease comes and takes away little pieces of your dignity. Little pieces of your sense of self.

It’s hard to resist the thought that with the addition of this latest bag the cancer is just cruelly laughing at me now. I’ve been here trying like hell to not let these things and this anger drag me down into the dirt too long. I’m worried that if I do I won’t get back up. And then this comes along, seemingly just to taunt me.

It doesn’t help at all that this is being caused by that ovarian met. You know, the one that could have so easily been taken out during my last surgery? That maybe wouldn’t have grown as quickly, had the drug that helps cut off blood supply to tumors been added to my cocktail two months after my surgery as promised? Instead, my oncologist threw me to his nurse practitioner for a month’s worth of visits and the order never got put in.

But, of course all of that is just crazy talk. I’m just some emotional lady that asks too many questions. Like a fly buzzing by the side of your ear.

Side note- I actually got copies of all of my first oncologist’s visit notes, and he makes a point of describing me this way (emotional, asks a lot of questions). Note to dumbass: this was the visit where I learned that I had stage 4 cancer, and you had the bedside manner of a man annoyed that his commute had been delayed by a funeral procession. I yearn for my buzzing fly to take up residence on the wall to witness your Clint Eastward-esque stoicism should some day you receive similar unfortunate news.

But I will tell you something else. I am used to it. There is no end to the code words for “Bitch” that can be pulled out and used to successfully invalidate and marginalize any intelligent woman calmly but firmly asking a question or expressing concerns that you don’t like. These include: ‘Emotional, Irrational, Aggressive, and my personal favorite (directed toward me on more than one occasion by the former boss I mentioned in my mid-year check-in)- “Martyr.”

We use labels because they serve a purpose and carry power. Apply the label and you’ve successfully made that person “other.” It’s like magic. Use this term once against me and I am successfully marginalized. You no longer have to listen to me or deal with the uncomfortable truth that the concerns I am expressing are valid.

It should be noted that in all of the instances I have heard these terms directed at me, I have never once used similar language to respond when these words are casually cast my way. Are they in my head? Of course. But you learn- especially as a woman in a professional environment- that the second you react or stoop to that level you have lost. The standards for YOUR behavior will always be higher.

Here’s the good news. You don’t have to care what people think about you being informed, asking questions and providing input. Put all of that aside right now and ask yourself an important question: What is more important to you- getting individualized care and staying alive longer for yourself and your kids, or your doctor liking you?

If the answer is staying alive longer, good choice, because your oncologist will probably forget about you long before your spouse and family will. Now, get ready. You will need to do a lot of research, and be as educated as you can before you can even begin to walk into that room and advocate for yourself.

Which brings me to the subjects to come next– If you want individualized care as a Stage IV Cancer Patient, you 1) have to be willing to be educated about every aspect of your individual cancer prognosis, and that 2) you have to continue to educate and re-educate every doctor you meet about your continuing story in order to ensure that the right care decisions for you will be made.