It’s been a week since I found out that I had to pivot my life to incorporate not only Covid, and all the other challenges, (we all have so many challenges) but now cancer as well.
It feels like months have gone by.
So many of you have offered support, thoughts, kindnesses and love and I can’t thank you enough for it.
In all of the unexpected research I’ve had to do, (meaning…I had no idea two weeks ago that I’d be here…) I’ve learned that being my own health advocate and paying attention to my INTUITION at every point is the absolute 100% key ingredient in my treatment plan.
I do not think my doctors have the whole story. Because they can’t.
They excised samples in the biopsy that showed intermediate DCIS and some that showed high DCIS. In my appointments they downplayed it and did not talk about MY ACTUAL pathology, but the pathology statistics of breast cancer research and treatment. One of them called it stage 0 cancer, the other said it’s “the stage before cancer.” They were emphasizing that it is not invasive. Not once did they reconcile that they do not really know. No one really knows. No one WILL know until the tumor is removed. I know it’s their job to take the science and make balanced decisions for their patients.
As an educator I look at the data all the time. I look at the data that relates to actual human in front of me that I am attempting to make educational decisions for. I look at the scientific data (what can be statistically measured, nationally normed tests), classroom assessments (that I calibrate making a rubric with my grade level partner) and the anecdotal data of how the child performs in class, other opportunities to show what they know, etc. I do not take one data point to decide major decisions about their education. Ever. Even if it’s just who is in reading groups.
Like my doctors, I am a professional. I trust that they do really know how to care and treat my type of cancer. But I do not think that they are really looking at this through more than one lens. I also know when I make a choice about my medical care they are the absolute best people to make sure I’m cared for as best as possible.
I do trust them. I will trust them to treat me with medicine and radiation if those are the things I need. When they were talking about those things I had ALL the confidence, because that is their wheelhouse. I found out from my rad doctor (lol, “rad” doctor) that if I get radiation I get 4 tattoos. They are little dots that “look like moles” he said, and I had to point out that I’m covered in tattoos. I was wearing long sleeves and a sweater, he didn’t know. I think that’s super cool, to have radiation tattoos. A mark of courage as part of the treatment plan. They help to calibrate/line up the radiation coordinates. I’d have to do 3-4 weeks of radiation. That’s 5 times a week for 3-4 weeks. WOW.
I’m not going to take the pathology of the 6 samples they took out of my body as the only indications of what to do. I do not think it is as minor as they want me to believe. My intuition has not failed me once so far in this cancer story, and I do NOT think this is over by a long shot. I wish I felt otherwise. I am not trying to win the “who’s the sickest?” cancer patient sweepstakes or cancer olympics. I am really just trying to make sure I live another 20-30 years, because I’m determined to live to at least 80. I mean for heaven’s sake. I’m healthy otherwise and I’ve been a good human. Can’t I get another 30 years, please? Maybe that’s selfish and greedy. Ok, give me until 70 then. That’s still ridiculously young in my opinion, but I’ll take it.
My sister in law found this forum for me, and it’s wonderful. This is a place where people are NOT mean she said. So far it sounds like they know what they are talking about. If you have DCIS like me, this is helpful.
Here’s the part of that thread that is of most importance to me at the moment:
Nobody knows what % of DCIS will eventually evolve to become invasive cancer and nobody can predict which cases of DCIS will become invasive and over what period of time, despite what you may read from some ‘experts’ on the internet. Some studies of low grade DCIS not removed surgically have suggested that perhaps 20 % – 40% will become invasive over 5 to 10 years but other studies have shown that low grade DCIS, left untreated, can evolve to become invasive cancer even after 25 or 30 years. For those with high grade DCIS and DCIS with comedonecrosis, it is believed that the percentage that will become invasive is very high. However because these types of DCIS are almost always removed and treated, there is no way to know what percentage will become invasive if allowed to progress naturally. It is known that after treatment (i.e. when the DCIS is surgically removed), if there is a recurrence, in approx. 50% of cases the recurrence will not be found until the DCIS has progressed to become IDC. Currently there’s a lot of research underway to better understand the biological factors that determine which cases of DCIS will evolve to become invasive and which are likely to remain DCIS (and therefore remain harmless). Unfortunately at this point in time medical science simply doesn’t have the answer yet, but stay tuned.
Herein lies the case for why my doctors want me to be part of a study. But you can see why women don’t want to. I’ve got (according to ME evaluating my path report, no help from my doctors) comedonecrosis that is “expansive.” That sounds pretty “pre-invasive” to me.
If I can avoid chemo I’d really like to, thanks.
Here’s to hoping.
I came home and worked on making my yoga space/creative space wonderful. Because of all the furniture moving around I ended up also rearranging my living room. It feels super fun and cozy. I ordered myself a new sewing machine last week. It was a birthday present/I have cancer so fuck it present. It’s a Brother machine like my other one and WOW it’s amazing. It’s got similar features but it sews like butter. I worked on some mask projects for a few minutes today and I was super impressed with its responsiveness. I’ve never before in my life sewed this much, and it’s nice to have two machines! Honestly, one is really so Quin (and Sam if he wants to) can work on projects with me. Covidlandia makes life kinda boring, so anything we can do at home becomes numero uno priority.
My studio is getting put back together again and it feels more like me, honestly, than the dark walls did. I LOVE that deep blue almost black color. But in a studio I really do like light. I feel safe and open in there, ready to let things go and let healing and love in.
I feel hopeful and sad at the same time, if I’m totally honest with you. I’m so tired from the last five years of my life. SO tired. Every year from 2015-now has just been waaaay too full of challenges. I am depleted. I am also heart strong more than ever.
Pehaps? Perhaps, being heartstrong is all I need right now. Perhaps being so physically and emotionally exhausted isn’t that big a deal right now. Perhaps the strength in my heart and my faith and my intuition is what I need, and that’s what to focus on.
Yes, I am still a teacher and it’s one of my biggest priorities. I want my students to be safe and to learn. We’re learning multiplication right now, and they’re actually doing great. I do not understand how multiplication makes more sense than adding things together, but…that’s what we usually have in 3rd grade. Yeah, my examples could be more thorough and precise, but that’s a great conversation to have with them.
Hang in there everyone.
But especially hang in there to the teachers teaching during Covid that have breast cancer and live alone.
I can’t be the only one.