The Chemo Diaries Round Six: Cycles End, Cycles Begin

Going into the final round of what I term Phase One of my treatment, I am reflecting a bit on two coincidences that have given me plenty to ruminate on. One of these is the fact that of one of my high school friends who I have not seen in far too many years informed me recently that her spouse is also going through chemotherapy and, interestingly, was just about a week ahead of me in the treatment schedule. The other coincidence of merit this week is that my neighbor will be starting her own chemo treatments at the same time I go in to complete my initial run of this badass toxic cocktail before moving toward a kinder and gentler maintenance schedule.

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Ready for my hook up, Nurse!

Neither of these coincidentally timed treatments are for the same cancer, which would have been too weird for believability anyway, and we probably won’t share identical side effects across the board or react too similarly to the drugs, but there is still a commonality of experience that cannot be denied. My friend from high school is one of those rare and thoughtful people who is cursed with the right balance of kindness and patience to really place herself in the center of care giving. It feels weird saying this, but I would not wish that upon anyone, as great a gift as it is. This goes back to my issue with patient guilt, perhaps; I feel lacking when I cannot help those suffering worse than me or I feel guilty about not suffering as much as them, and this extrapolates to me not wanting others to suffer as a result of my condition or being forced to take care of me. I doubt that my feelings about this are at all uncommon, even as I feel particularly fortunate about how well I have fared with my own treatment and how happy I have been about maintaining my generally good health and emotional well-being. And I should assume that my friend’s spouse is probably a much nicer and easier person than the fellow my wife has been putting up with.

My neighbor will be parked in a chair across town from me in spite of almost using the same infusion center. She found an oncologist she could relate to better at City of Hope, which is truly important when it comes to this sort of thing. And she gets the pleasure of a two-day treatment! I am torn between sympathy for all the time she is going to be connected to her drip (8 hours on the first day alone) and envy for all the time she is going to be connected to her drip. Of course if they give her something that makes her sleepy, that kind of undoes everything; I appreciate the experience because I am both a part of what is going on and also able to make genuinely productive use of the time. The night before the infusion, she was out in her back yard cheerfully putting out food and saying goodnight to her two cats. She is so vibrant and committed to her pursuits that it is genuinely baffling to think she is about to face down months of chemo. I have barely seen her slow down in the years we have lived with a shared fence, even with a hip replacement or other statistically probably malady for her supposedly advanced level of maturity. (I am skeptical that she is as old as she claims, which isn’t even really that old considering that we now have the gift of immortal cells to keep us perpetually young, at least in spots.)

Plus she’s an actress, so really, how much of what she tells me should I really believe. That boy she brings by to pose as my daughter’s friend might not even be her grandson, though he would have to be some sort of an acting prodigy to pull off his part so well, consistently, for so many years. So, okay, I’ll buy that part of her life as authentic. But this cancer thing, the conveniently change of venue… I think she is piggybacking on my thing here to study up on some new role. Or I would like that for her, though honestly, with her apparent gusto, it is hard not to see her throwing herself into this treatment in order to really get the most experience out of it. Taking into consideration that she is British, on the other hand, she might have a preprogrammed impulse to simply pretend nothing traumatic is happening and expect that tea will still be served promptly. At three. Or whenever the proper tea time is — I know she explained it to me once.

My high school friend asked me about how I deal with the situation on an emotional level. Her experience with her husband bears some similarity to my own, and I think we three cancer patients of this particular moment all may share some qualities of internalization. I don’t know whether either of the other two are likely to weep in their private moments or cry openly to their loved ones, though I doubt it.

A few days ago, while I was serving a cappuccino out of the lovely converted camper that houses a coffee service for my daughter’s school and for which I generally hold the position of chief barista, I became engaged in an interesting conversation on dealing with negativity in a positive manner. The other party suggested that ignoring the negative, or using the “fake it ’till you make it” tactic was a suitable way to get past the negative issues and getting on with life. I suggested that this was simply a way to internalize problems, which could effectively compound them and wear unduly on the individual. Many of us, including myself, have a tendency to follow this pattern. I learned it from my father, from which I saw occasionally disastrous results. In my personal experience, it never seems to end well, or at least not comfortably. Keeping negativity inside may seem valiant or noble as a means of protecting those around you, but in actual practice this tends to increase tension and reduce trust. Internalization does not help progress.

On the other hand, there is a way to deal with negativity that is more proactive while still not dwelling in the negativity as a defining element of life. 

By acknowledging the negativities in our lives without letting them define us, we can discuss them in a positive light. That is, we can retain focus on a positive outcome by dealing with negativities from the position of moving beyond them, focusing on desired outcome. How are we working to solve the problem? What are we looking to achieve? Which tactic will offer the best outcome? Recognize the issues, recognize the roadblocks or bumps along the way, but keep the focus on the objective. Dwelling in the negative is a way to admit defeat, to claim powerlessness over the situation, to give up. Living in the positive allows the negative issues of the day to exist as a component of our lives, which they are, but components which can be dealt with — without controlling our lives.

My high school friend had asked me about my emotional and spiritual support and how I was doing on those levels. It got me thinking. These are topics I am generally happy to talk about. I suppose I had an edge on this because the road toward my actual diagnosis took a rather long time. It was several months between the X-Ray identification of the tumor and the biopsy that confirmed cancer, and each step of the way, even though there were voices saying “it could easily be something else,” there was also that inner voice telling me to just check up on the options in case it wasn’t something else. Before I was diagnosed, I had already accepted cancer as a very likely option and had already gotten angry and upset, but mostly and consistently at being dragged on without knowing. I hate the uncertainty, and I felt absolutely terrible at the time; it was difficult breathing and I was super tired and I had just come off a crappy summer of being sick, too. When I got the diagnosis, I was relieved, because at least I knew WHAT I was dealing with and could formulate a plan to attack it. Granted, I had some disappointments: it was stage 4 rather than the stage 2 I had expected, and I did not have any actionable mutations that could immediately be attacked with targeted gene therapies (those go to the other 50% of folks with my “garden variety” cancer), so I had to get the old conventional treatment. But I was enthusiastic to start.

My nurse wanted to hook me up with a support group, and still wants me to, but I just have little genuine need for that sort of thing. I have always been a relatively self-reliant person and I’ve never cared for any sort of group think. I also don’t feel sorry for myself the vast majority of the time. Once in a while, sure, I’ll have an outburst. I cry occasionally, too, but mostly not about me having cancer. I get saddened by other things. And I do get really sad at the prospect of not being there for my daughter if she needs me when she is older. On the other hand, I fully expect to be there for her for many, many years to come.
What I don’t have any problem with is the idea of death. It honestly doesn’t affect me much at all outside of the things that I’ll miss that I really, really want to see. I’d love to see my daughter grow up, and I plan to, but when confronted with my own mortality that part is the hardest. Otherwise, I’ve been an agnostic since I was about 8 years old and, really, an atheist since I could understand the difference between the two, but I generally do not refer to myself in those ways. Rather, I settle on the notion, if I need  label at all, that I am a spiritual person. I am confident that there is no need or use for a monotheistic god in any sense, though I admit it would be nice to discover that there is something more to experience after death. In that regard, it is kind of the last really interesting mystery of life, and I’ve always had a level of excitement about experiencing it. If it turns out that there is nothing there, I won’t be disappointed because, well, I won’t know the difference. What is the point of being afraid of something that cannot be experienced? If I believed in Hell, I guess the situation would be different, but because there is no credible evidence for Hell and because it was a construct made based on a misrepresentation of an earlier concept in order to basically threaten people into behaving, I am confident rejecting it outright. There is nothing soothing to me about any religion, most of which just make me angry or annoyed anyway. My wife is a Catholic, so I don’t go on too much about this at home… my daughter knows that we do not share the same beliefs and that she will be expected to cultivate her own as she grows. So far, she’s got a good head on her shoulders and something of a spiritual base, which is nice. I just want her to develop her moral compass based on doing the right thing for the right reasons, not out of the fear of repercussions after death.
As I have written elsewhere in this blog, I don’t consider myself brave. Bravery requires fear, and while I am trepidatious some of the time and have my dark moments where I feel mentally and emotionally dismal, most of the time I have felt quite fortunate for many more reasons. It occurred to me that I don’t feel sorry for myself because of my condition. It is just what it is, and having made the decision right away when I got the diagnosis that I would simply accept what was happening and move along, I have been able to avoid getting depressed or bogged down in self-pity. Also, realizing how much things have changed over the past thirty years, and especially over the past ten, has really colored my view of this journey. Had I not been involved with the particular medical team that I ended up with, things might have played out differently. Am I being guided by some supernatural hand in all of this? Sure feels plausible, at least if I was inclined to give up a huge amount of human integrity and personal responsibility in all of this, but I like the metaphor. My nurse told my wife that she was worried I was putting up a front, because I always seemed so happy and positive about my treatment and about the process, and she wanted me to go to a support group or see a therapist. Now my nurse just marvels at my attitude and still wants me to go to the support group, but I think now as an example of someone who is simply trying to redefine the journey. I’ve had long talks with her and with my oncologist about how redefining the narrative of a cancer diagnosis is an important aspect of a patient’s response. We were all rooted in an outdated narrative that includes the notion that cancer has the upper hand, that treatment is deadly and that for most people, especially with advanced cases, this is a losing battle with few survivors. Cancer is a big bummer, no doubt. It’s a potentially deadly condition and a difficult thing to eradicate in many instances. But it is, as I often say, just another bump in the road. Everyone encounters their own bumps. Cancer is a pretty big bump and it may be somewhat harder to get over than other bumps, but if it is approached correctly the ride is manageable. I think the trick is being a determined and thoughtful driver, but our bumps are all different and ultimately other people’s driving styles may work better for their bumps than for mine.
Do I have emotions about all this? Heck, yeah. Does it piss me off? Heck, yeah. But it also gives me a whole lot of focus that I might have been lacking before this experience. And it makes me more satisfied to look rationally at the situation. Sense and reason soothe me, logic soothes me; knowledge soothes me. If I can translate any of that into a poetic or useful or relatable piece of work that will possibly help anyone else, that is immensely satisfying. For these reasons, I’m mostly happy, most of the time. And although I am bummed about being tired, as my treatments have progressed I have avoided my darkest days by remaining more focused and open and understanding that, even at my worst, I’m not going through any of this alone — support group or not.
It’s funny: I used to be a lot angrier about things. I’ve still got a short fuse with regard to my patience a lot of the time, but I’ve found much less to be angry about lately. Frustrated, sure. I have to deal with the same junk everyone else does, so frustration abounds until it becomes feasible to just abandon the constraints of our modern society. I don’t see that happening. But I enjoy letting go of the anger more and more. Trying to envision a new article around the idea of “outliving cancer for the best years of your life.” Sounds like a good plan to me.

 


 

So, I have completed my first six chemotherapy treatments. This particular cocktail is done being consumed and, in a couple of weeks, I will be getting a new scan to see how far the tumor in my lung has shrunk. There are no reliable markers to show the levels of cancer in my bones at this point, and scans cannot give a fully accurate assessment of that, but the tumor size will show overall effectiveness of the treatments and help us to determine the next step. My options are to remain on one of the chemo drugs or on Avastin, which will prevent the growth of new blood vessels and, therefore, keep the cancer more or less at status quo. If the tumor is still present, chances are that I am going to press for more chemo in order to push the cancer closer to total remission. However, those choices will not be made until there is a proper CT scan to analyze and some real options to weigh. In the near future, I also expect that immunotherapy will be an option, and that may well eradicate the cancer entirely if it happens to work with my body.

Either way, Round Six was a milestone and I am glad to be moving along toward a more maintenance oriented treatment.

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