Chapter 10 – So What Do You Think?

March 11

I have been thinking, thinking, thinking, and cogitating and ruminating. I have been agonizing and wringing my hands and gnashing my teeth. I have been slaying dragons and killing aliens and cleaning out deadwood.

In other words, I have had to make a difficult decision.

It all started this Monday, when I was given the choice to discontinue chemo. The reason for having to make a decision is the state of my hands and feet. Both have developed neuropathy as a result of chemo, and it had become more severe after the third cycle. Neither are totally debilitating as yet; however, the next treatment … the last cycle … could be expected to make it worse.

The obvious risk to my future quality of life was daunting. The ability to paint, to drive, to cook, to work in the garden, to walk and exercise … All would be compromised. Not a happy thought.

At the same time, I was forced to acknowledge the increased risk I would be taking in altering the recommended schedule of treatments.  In the crap shoot that is conquering this cancer, by skipping the last treatment I would be increasing the odds that a future cancer might develop from some mutant cell that survived the chemo so far. The chemo might have missed one tiny little rat bastard cancer cell lurking in the depths of some black hole … most likely next to all the calories that NEVER EVER go away if they were at one time attached to chocolate! But then again maybe they have all gone bye bye already.

This is where one is wont to gnash one’s teeth because there really is no way to tell!

So, for two days I did just that. Gnash & Churn became my new identity.

Until it occurred to me that the real issue was having to make a decision at all. I realized this is the first time since this whole rodeo got underway that I have had ANY choice. This is really the only decision I have been asked to make since somewhere around early December. For the entire time since finding an atypical cell during a routine visit, until now … it has all been … Step one … Step two… Test … Test … Doctor … Doctor … Test … Exam … Surgery … Appointment … yadda, yadda, yadda.

I guess I felt a bit out of practice.  OMG real responsibility. Yikes! One forgets.

But after the shock of being alone in my decision making, I recognized how grateful I was to have the choice to stop. Some things are not worth the risk.

After surgery, and learning how to adapt to a new personal plumbing system, I hope to have much of the old me back … Fighting fit and ready to move on. And along with the enhanced me I will need my hands to help with the plumbing.

And in the end, it really is a crap shoot! But just think … NO MORE CHEMO! Now I can get down to worrying about the surgery.

I excel at worry, so I am all over this one.

#10 COMMENTARY

When I think back to this point in my treatment, I am struck by how truly awful it was to make this decision. It was a debilitating and agonizing responsibility.

After three and a half months of schlepping along with the program that had been laid out for me, and being told what was going to happen next, suddenly I was in charge of my fate. There was no one to tell me what I should do. I had become comfortable cruising along … going with the flow and taking whatever they dished out.

Then … WHAMMO! OMG! I was solely responsible for making the decision to stop treatment or to continue. It felt like Russian Roulette. Which chamber contained the magic bullet, and which chamber held the killer cell?

I had finished three of the four cycles of treatment that were recommended. To continue meant I ran the risk of making the neuropathy worse, as well as irreversible. Neuropathy affects the nerves in one’s extremities, and is one of the side effects of chemo. It may or may not become permanent over the course of treatment.

In my case, it took the form of pain, primarily in my hands. My fingers and palms were hyper sensitive and felt as if they had been burned. It meant I was unable to hold things securely, or grip small items without some level of pain. It affected my feet as well, but not to the same degree. I hobbled along when it flared up in the soles of my feet, but was more bearable than the pain in my hands. Perhaps because I didn’t feel much like walking anyway, so no big sacrifice there!

However, as it worsened, so too did the risk of its becoming permanent. The prospect of being unable to grip a steering wheel and drive safely, or to hold a paint brush, or to hold a pencil to draw, or to hold a spoon to stir carrot cake batter

… well, the risk was pretty out there, to say the least.

So, I was given the option to stop treatment after only three cycles. If I stopped, I ran the risk of having the cancer show up later because it had not all been eradicated. If I continued chemo, I ran the risk of not being able to use my hands without pain for the rest of my life.

On the plus side, the doctor did admit that the last cycle was of lesser value, and had the least impact with respect to dealing with the disease. The initial treatments were the most crucial and carried the most weight in fighting the cancer. In fact, each cycle declined in its impact, with the first being the most effective. So, there was that to consider. Also, there was no indication the cancer had spread before chemo even began … So again, on the plus side.

However, on the other side was the fact that there was absolutely no way to assess how far the cancer had gone. Had it gone beyond the bladder and invaded other parts of the body?

There was no way anyone could know until after my surgery. So, stopping early meant I ran the risk of having the cancer recur after all this was over. And, should that come to pass, there were no other options for treatment.

So … as I say … Russian Roulette.

Initially, I could not understand why I was crying for the first time since this ordeal began. But I am here to tell you that having this responsibility … to choose which path to take … was beyond daunting. I remember my oncologist telling me that if I were a breast cancer patient, I would have had something like 23 different choices of treatments to make at the outset of my treatment … plus other considerations … Radiation? Chemo? Medications? Stop? Go? Something? Nothing? The combinations and permutations must seem endless.

I can’t even imagine how paralyzing it would be to make all those decisions and to ultimately live with the outcome. Your choice! Your fate! There are no words to describe how agonizing these decisions must be to live with.

I realize now what a blessing it was that I had had no choice from the get go. Here I was with just the one yes/no question to answer, and I was at a standstill. What a wuss! I was a basket case. I cried for most of two days. sobbing and feeling sorry for myself for the first time … ever … since I had been diagnosed.

It took two or three days to realize that my crying, my angst, my sense of loneliness, and my separation from the rest of the world were primarily a result of trying to integrate the old me … the original decision maker, the rational business woman, the artist, the socially adept captain of my ship, and the take charge decision maker I was before … with the cancer patient I had become. I really had lost contact with the old me, and was at a loss.

In fact, I realize now, she no longer existed. The original me had checked out. I was on my own. I was used to making decisions. I had a long history of fending for myself and being successful at it.

But, this decision was life and death, and that changed everything.

I really, really, really wanted to stop. Chemo was beyond disgusting. It was nauseating and debilitating and hurt like hell while they gave it to me. It destroyed my life. It made me feel like a zombie. It laid me out and knocked me flat for days at a time. And it was going to destroy the rest of my life … but only maybe.

It could also save my life … in fact it might already have done so …

So, in the end, it became a question of risk. Was the risk of cancer greater than the risk of being able to drive and paint and cook and live my life as I wanted in the future. I guess I really had reason to be at a standstill.

As it turns out, I decided to stop treatment. The doctor supported my decision, and I told him that while I would miss seeing him, the chemo could take a flying leap! What a relief … making a decision and moving forward.

I have to say I never really felt my decision was right or wrong. Merely making the decision was my accomplishment. I took responsibility for it and stood by it. It was, after all, the quality of my life, the control of my body, and my ability to do what I want in the future, that were in question.

Selfish? Yes, indeed, but then as my oncologist said … all successful cancer survivors are by necessity selfish. It is how they survive. And I realize this decision alone set me apart completely from my past. Having to take on this responsibility, having to make a life and death decision, more than anything else that had gone before, ultimately changed me forever.

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