I Prefer Not To – Cancer’s Only Rule

One of my many loves in life is math (or as my OZ friends say, maths.)  While I’ve never been particularly great at calculation (speed and place value are not my thing) I love the  logic of math and following the rules and arguments that move you from point a to point b.  Along those lines, I like to decide when I hear opposing viewpoints if they appeal to that logical side of my brain causing me to want to dig and research to determine if the evidence is credible or if they appeal more to my emotions. At the moment, my logical brain and my emotional brain are at war as I am faced with yet another choice less choice.

I am cancer free. For all intents and purposes, the chemotherapy did its job. When I finished chemotherapy not quite a year ago, I was re-scanned, and the cancer was gone.  No trace of it. The months of no energy, no appetite, mouth sores, endless diarrhea and vomiting, brain malfunction, and general exhaustion that is chemotherapy worked. The fight was worth it.

To be on the safe side, just in case that lil-bastard cancer was hanging around on a microscopic level, I scooped out all the tissue around the area that might have been infected by way of mastectomy.  Although my surgeon at the time, told me it would only reduce my risk of re-occurrence by 3-5% and it was not considered a significant enough risk to be mandated as “medically necessary” I opted for a bi-lateral mastectomy. That is, as a matter of extra precaution, I took out both sides, just in case a similar mutation was even thinking about forming, despite having no genetic markers. All of it, scooped out like ice cream. Gone.  Again, the fight was worth it.  The end’s justified the means.

The only thing left was skin.  While not probable, it was possible that a microcosm of cancer was hanging out somewhere in my skin.  Again, not probable just possible.  As another layer of precaution (because we can’t just kill something we have burn it). Despite my beginning to question the medical necessity of this, I did it.  I figured the procedure had been refined enough and enough data had been collected that it was more safe to do radiation than not to.  I mustered up my courage and I enlisted for six weeks of radiation camp.  Every day, I marched in and allowed myself to be burned over and over and over. I endured pains in unmentionable places that would disturb a P.O.W.  But, the battle was worth it.

My doctors recommend that we throw every weapon we had against cancer and I agreed.  I have fought my fight.  There is simply a part of me that thinks if we haven’t got it by now, we aren’t going to.  It’s either there to stay of gone for good.

However, a new weapon has emerged.  As an extra, extra, extra  preventative measure to keep the cancer from coming back, there is this new medication that was recently (as in the last 6 months) approved by the FDA that my oncologist is now encouraging me to take.  Folks, this medication might be the devil.  I say that because all test results indicate that it will cause Linda Blair Exorcist level reactions. It has all of the exciting side effects of chemo, except for losing your hair.  Not only are these side effects possibilities the way they were with chemo, they are now more like probabilities given the research and  everything I know about how my body reacts.  In other words, it’s pretty much a guarantee I’d be putting my body through a war zone all over again… for a year.

I’m not the kind of person that is quick to judge so I pulled up my old friend Google and did a fairly significant amount of reading and research.  Don’t get me wrong,  I don’t want to be mistaken for thinking that I know more than my doctors.  I do however want to have an informed opinion in order to make a decision.  My oncologist shared that the reason she is suggesting it is because studies indicate that the drug might lower my chances of the cancer returning somewhere in the neighborhood of 2-3%.  (It’s interesting to me that while a double mastectomy lowering my chances by 3-5% wasn’t medically necessary taking this heinous medication that might help prevent it’s return by 2-3% somehow is but that’s besides the point.)  According to my oncologist this is one more weapon we have now to help me prevent cancer’s return.  That is her job and I appreciate her for doing it.  That said, it’s my decision to make as to whether or not I want to take it.

After reading all I could about the drug, speaking to as many credible sources as I could find and much careful consideration it seems to me this medication is being prescribed because it can be.  The drug is approved, insurance will pay for, it can be a treatment, therefor it is.

But should it be my treatment?

While trying to make the decision of what to do a friend said to me I would have that “shower moment” where the answer becomes clear.  She was right.  I did have that shower moment it just happened to be in a pool. It dawned on me that while it’s tempting to ask, what would you do? The only thing that matters, is what would I?  Am I the kind of person that is more guided by fear that cancer might come back? Or, am I the kind of person that could decide to stop fighting and be okay with it?

Since day one, I have said there is no wrong way to do cancer.  It is your fight to fight, as fiercely as you need, as bravely as you can, for as long as your body says, “fight it.”

While there is no wrong way to have cancer, the one rule to cancer is, when you’re done fighting, you’re done fighting, and that needs to be okay.  It is by far the hardest decision you will ever have to make.

This decision is the worst because it not only weighs on you but on those who love you the most. It requires an act of the most selfless love to say, “I respect your right to stop fighting.”

What do people with cancer need?  We need you to love us enough that when (and if) the time comes when we tap out, you will let us rest without feeling like we let you down.

The truth is, hanging up our gloves and being done fighting is harder on those who love us than it is for us.  While it’s tempting for those who love us the most to encourage us to keep fighting, sometimes what we really need is for you to tell us it’s okay if we want to stop.

My a-ha moment was realizing that I was defending my right to say,  “I’m done.”  I wish to say thank you, but no thank you. I am done fighting for now. Call me Bartleby the Scrivener but I prefer not to.

It’s the right decision for me at least for now.  As a friend said, “whatever decision you make you just need to be resolute about it.”  She’s right.  While it is not without the possibility of cancer one day returning, I believe that I have taken enough steps to try and prevent it.  I’ve fought my fight and I’ve earned the right to stop for as long as I need to.

I might in a month decide I’m ready to fight again and I want the additional possible prevention.  I might a year from now be forced to come out of cancer retirement and fight again.  Hopefully not, but I’ll make that decision when and if I’m ever faced with it. Other’s aren’t always so lucky, they don’t have as many options.  For some, making the decision to stop fighting has more immediate and permanent consequence.  It’s a decision I’ve seen many time through my journey and it’s the most taboo of all the awful decisions people fighting cancer have to make.

When fighting cancer, when do you earn the right stop?  This is the question we don’t prepare people for and no one is quite comfortable dealing with.

No one’s opinion of what they think they would do when faced with a choice-less choice is more important than the person who actually has to make one. After heavy consideration, I’ve made my choice.  It has to be the right one.  But, I suppose that if I’m wrong, and the worst thing that could happen did, what I’d want more than anything is for those who love me to tell me I didn’t disappoint them by choosing to stop when I needed to.

Be resolute in your decision, and as a friend said, if you’re wrong then you can plan your own fucking-funeral. But when you really think about it, what could be cooler than that?

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