Questions

03-23-2020 I thought about death and dying last night, and with the clouds and rain this morning, it’s hard not to feel a bit weepy. I have so many questions about my treatment and the surgery, and just sent a list to Donna in hopes it will save time for her to have all of my queries in one place. I’m sure I’ll have many others, but it seems more efficient to write them down, and send as a list. I’m new at this, for sure, and there doesn’t seem to be a step-by-step guide (even a flow chart would be great), on how to proceed with everything that is involved. I am still not sure about some areas of the timeline, such as what drugs are used when, for how long and then what is the follow up, etc? Mike is watching the movie PT109 and the scene is a boat that is blown up in the water, with fire all around the debris and the lone service member swimming around between the fire and the wood that is floating like tiny, ragged ghost ships. I feel like that lone service member when I am feeling at my most exhausted and trying to sort all of this out. Working in the positive reinforcement community is an amazing means of living life, however, when I have to deal with people that don’t have the same background, it’s shocking when someone speaks without consideration of consequences. Mike and I had a conversation about words, and how they can be hurtful, even when someone didn’t mean to hurt the other. This came up when a friend of ours commented in response to one of my posts. She said she was happy that Mike was helping me, even if he called her “Thunder thighs,” 30 some years ago. “That’s not what I meant,” Mike said when I asked him about it, “I meant she was strong and active.” When I explained that “Thunder thighs,” meant big hips/butt and it was no wonder she felt hurt enough to bring it up 30+ years later, he was surprised, and sincerely expressed that he had no idea. That has sat all these years with her, and Mike never thought about it again. Mike called her to talk about it, and I hope that she understands that he has always respected her as an intellectual and amazing woman. Words matter. This is a great piece on the subject with great perspective from a human point of view: https://www.dropbox.com/s/7u270zept0fr8ww/words%20matter.pdf?dl=0 “They call it chemo, but it’s not really, it’s targeted treatment,” Donna explained. “We talked about this last week,” she added, and then followed by, “I know we went over a lot of things, so you might not remember.” Not only was I given the news about the HER2 positive results, but the oncologist brought up all kinds of drug names and timelines, and then Donna took over to explain some of the timelines that might happen, based on the type of cancer, and it all sort of got blended together, so yes, I have questions and need some clarity. Not to mention the added stress of the Covid19 virus and the stay at home orders for everyone in California, except essential workers. Thinking about this after I hung up the phone, made me recall Aaron Clayton’s opening talk at Clicker Expo, shortly after his wife Wendy died of ovarian cancer. He talked about a nurse that was assigned to Wendy who had as one of her duties, rubbing lotion on Wendy‘s back each evening. At first, the nurse did pretty much a cursory job, but Wendy, adherent to positive reinforcement, thank and praised the nurse as though she had given the most amazing back rub ever. Aaron then explained that the back rubs started to get better, and longer and with intent, and Wendy continued to give her beautiful feedback that helped the behavior to grow into a friendship until the end of Wendy’s life. As Aaron concluded this story, there wasn’t a dry eye in the auditorium, and I’m going to try, really hard, to ignore what I don’t like and reinforce what I do like, of course within reason. Thank you Aaron and Wendy for that. This all comes up because I hate having to chase everything down, make multiple calls to get a simple answer about treatments, and I am realizing that these are the moments when I feel paralyzed. It’s an added burden, with all that is going on, simply because of the lack of communication between all these medical entities. Medicine has become so compartmentalized, and there seems to be some large gaps in how to work with the public. In the world of cancer, it seems it should be even more important for the well-being of the patient, that clear and frequent conversations would be the priority. I simply want the same effort and support that I have given my own clients over the years! It makes me realize how amazing the positive reinforcement community is and how we lead in the customer service area. How do we mainstream that? Fear of rejection or not getting what I need in a single call, without a hassle, is a wall for me. Not a reasonable, or logical thought process, but my emotions are somewhat raw right now, and I don’t feel like scaling that wall today, but I will. I’m also concerned about the entire medical world having to deal with the Covid19 pandemic, and in some ways, it feels selfish to want anyone in that field to jump into action on my behalf. There didn’t seem to be an immediate need for the surgery, or it would have been scheduled already, so I’ll wait a bit longer. What causes a body to turn against itself? They really don’t know with so many cancers, and even though breast cancer is the 2nd leading cause of death in women, (with over a million new cases each year), and yet, we know very little about why. Of course, there are factors, such as genetic, but that’s a small amount, (only 5% of breast cancers presented are genetic), pointing toward environmental, diet and stress factors, but no real information about why. Many women that live very healthy lifestyles still get breast cancer, so no real good answers, but there is a lot of progress in treatment success. My type of cancer has about an 83% survival rate after 7 years with the treatments that are being suggested, but I won’t know for sure until the surgery and the lymph glands biopsied, but as it stands, with what is known right now, that’s the figure, and it can be higher, or lower, depending. My daughter Tiffanie and my Granddaughter Dorian live with us, but Tiff has been pet sitting for nearly 3 weeks, which was right before the Covid19 hit San Diego, but they are coming back on Saturday and Dorian was at her dad’s over the past weekend. Her dad didn’t follow social distancing practices and allowed her to visit, shop, etc., so, now we will have to isolate from her for two weeks, but in the same house, so I’m glad we have a lot of space here. I don’t get what people are thinking when they risk others to please themselves, and potentially put themselves at risk. I get it with young people that are still developing their brains, and who think they are invincible, but this is a middle-aged man that made those decisions.