Brave is not surviving cancer, or coming to grips with things like a misshapen boob, a plastic port implant to inject poison into my body to kill the cancer, and not screaming out loud when I look at the wrinkles that have grown more deeply on my face since this cancer gig began. That’s not brave—that’s pretty much life with cancer. Brave is more about being able to stand up for oneself in the process, because it’s just hard, from every angle, at least for me, to do that at times, and do it when I don’t feel my best. I’m sick, (no pun intended) of holding in my emotional anger when I feel like I’m not being listened to, but it is also not great if I get mad or yell, and in fact, I always feel like a failure when I can’t hold my emotions back. Yet, it eats at me because I’ve had difficulty speaking up for myself though my lifetime and this is an important time to be brave and advocate for myself. This has been a pattern for much of my life—to suck it up, deal with it, let it go, move on, keep it to yourself, stop worrying about it, etc., but the conflict is real, and it often reminds me of the times in my life I was told those things by parents, family and friends. My therapist Karen, says that guilt is more akin to resentment, and I can see that. So, when I’m angry because I don’t have time, or the desire to train my own dogs to not get under my feet when I’m in the kitchen, and then feel guilty, it’s not really about guilt, it’s resentment that I’m still so fragile and affected by the side-effects of the cancer treatment that going through all the formal steps of training dogs to stay out the way eats at me, and I feel guilty and sad.
It’s been a year since I was diagnosed with breast cancer. I only have one more treatment to go and the worst of the drugs will be done, and I'm grateful for that.
On the other hand, it never feels like something to celebrate, just to be done, and hopefully to get past the side effects so I can live more pain, gut troubled and sleeplessness—free. It’s not even that I want to “get on with my life,” because, other than not seeing private clients and going out, I’ve still worked from home with the Karen Pryor Academy students, and I’m blessed to have that part of my life intact, even though it’s been more of a challenge with the fatigue and the on-going side effects. I never understood, nor wanted to celebrate the ending of the chemo drugs—some with bell-ringing ceremonies and more.
Some might think I’m silly to resist an end of chemo ceremony, and it took me some time to figure out why I don’t think ending chemo is something to celebrate, and in fact, has always felt like the entire process was punishing for some reason. And then it hit me that it’s because it’s negative reinforcement at its finest and that is the big conflict in my mind. Negative reinforcement is defined by an aversive experience ending, and it offers relief when it stops, and that just is not what I consider celebratory. It’s a quadrant of learning I would rather not experience, any more than seeing dogs being strangled on a choke chain and finding relief when they stop pulling—lacking the information for the learner to understand and know what to do, how to do it, etc. It lacks teaching, guidance and humane treatment and my entire career has been to help people and their dogs communicate without fear and intimidation. My cancer treatment has been full of fear and intimidation, with very little guidance as to how to cope, or what to expect through this past year of treatment and, I'm sure, beyond.
It makes me consider how dogs are forced to do things, such as going to the vet, and how we mostly don’t ask their permission because they need some treatment outside of our expertise. We often use might with them, dragging them on leash, restraining them, picking them up, etc., and without helping them to understand what is happening, and as such, they are often frightened and show that fear via a range of emotional signals—To name a few, whining, growling, snapping, urinating/defecating, and more, and that’s how I feel internally at times with cancer treatment—that I didn’t really have a choice, and therefore, the pain, the side-effects and the fatigue cause me to feel like I’m on a very tight, short leash a lot of the time. With dogs and cooperative veterinarians, we can build, via training, lots of ways to help our dogs overcome, and if not actually “like” going to the vet, at least we can help them to tolerate it by giving them a way to participate in their treatment. This is done via a behavior where the dog is taught to let us know when they are ready, when they need to stop and when things can proceed. It’s not a hard training goal, it simply needs clear rules, so the dog has some power to cooperate in their care. While there is little, there is some cooperative part for cancer patients, which I want to acknowledge.
I bring this up because I had to have my first mammogram since the diagnose and I still have yet, another seroma, and it scared the hell out of me that it was going to be very painful to participate in having my breast squished with the hard lump that covers an area close to 3 inches long. I was anxious and teary a couple of days before, but it was going to need to be done at some point, and so I went, but as I explained my fears to the wonderful tech, I broke down and cried as I also saw the original mammogram images that I had brought on a CD to give them the comparison, but was never able to open it and had never seen the images from the original mammogram. In general, I have a pretty high-pain tolerance, but I also have on-going pain with the neuropathy in my hands and feet, and the chronic pain from my neck, all of which made me worry about adding one more painful thing, and I was feeling panicked and alarmed.
In addition, seeing that visual image of what looked like a bright, white star, in the foreground of the dark breast material, AKA Fred my tumor, caused me to break down, and I felt so very alone at that moment, even though I know I'm not, I felt very isolated. I think I had more of an emotional reaction to all of that, than when I was given the original diagnosis. Clearly trigger stacking. This brings me back to the word brave, and for me it was talking to the tech and telling her all my concerns and hoping she would understand and not think I was being overly-dramatic or a baby.
The tech actually thanked me for telling her, and said she would do the “good” side first so we could see how I did with that. The 3D image machine (first time I've had that), didn't take nearly the pressure that the original mammogram machines require, and with an empathic tech, it was okay, and not a bad as I thought it would be.
When the tech did the left side, she went very slow, adding pressure a tiny bit at a time, asking if I was okay, and only proceeding if I gave permission, and she assured me that she would stop at any point if needed. She also got permission to do less images so I wouldn't have to endure more than was needed. All procedures should go like that, and I was so grateful that I had spoken up, rather than just allowing one more thing to be done to me in the course of curing me.
I would guess that many people stop treatment because they feel so used, so out of control, and not brave at all, (first with the diagnose, and then with the lack of treatment options that neglect mental health), and I'm so grateful that Scripps got me in touch with a therapist to help that side of things. After I explained much of this to Karen, my therapist, she asked me, what would I like the doctors to say to me that would give me comfort?
I answered, that they should learn to ask, “How can I help you get through this?” Not the medicine part, but the emotional side of things. How can I support you? It's a simple question, and just being asked is a form of support.
Update on the afore mentioned seroma is that I have to have surgery again. The doctor said that draining it again is an option, but it will likely come back since it’s in the exact area as before, and I was super careful about using tight compression on the area to help keep it down, which didn't work. Dr. Rivera plans to go in and do some repair and stitching work that will help fill in the area more so the fluid doesn’t fill up the space again. I’ll learn more tomorrow afternoon when I speak with his assistant. On a good note, both Mike and I are vaccinated with both doses of the Pfizer vaccine, and that feels like there is some light at the end of this year-long odyssey of Covid and cancer.
