![](http://d10j3mvrs1suex.cloudfront.net/u/589923/bb80ef3a851fc5225b0148b57a514c6fa7c6310a/original/blog-7-genetics.jpg/!!/meta:eyJzcmNCdWNrZXQiOiJiemdsZmlsZXMifQ==/b:W1sic2l6ZSIsIm1lZGl1bSJdXQ==.jpg)
Tuesday, February 15, 2022. I checked my email. Resilient-Researcher-Rochester J had sent a response, copying me and Peaceful-Comforting-Scientist A. I immediately sent a private email to Peaceful-Comforting-Scientist A, asking for her phone number. An hour later, she wrote back with her number. “I’ll call you tonight,” I replied.
Miah was now working from home. He had gotten permission from his employer to switch temporarily to a work from home situation. He had told his company, “I can’t leave my wife at home, all alone, to be by herself all day dealing with this.” They were very accommodating and allowed him to switch to a remote situation for the time being.
On this day, Miah decided to tackle one of the items on our new To-Do-List, which was to hire a cleaning person. We had talked about this luxury in the past, but never wanted to go ahead with it because it felt unnecessary. Plus, I really love my “domestic goddess” duties, as I like to call them. But now, I didn’t know how I would be feeling in the upcoming months, and we wanted to take the housecleaning off my plate. I remembered that my benefits package at work included a paid membership to Care.com, so I logged into the company intranet site and located the membership details. I gave the info to Miah so he could setup a membership and post a job for an independent contractor to help with the housecleaning. Even though I could have signed up and posted the job myself, Miah wanted to handle it because he didn’t want me to have to deal with anything else. He only wanted me to focus on happy stuff – my music, my work, my swimming.
My phone rang with a number that looked like the hospital. It was Surgical-Oncologist-Doctor L, calling to explain the MRI results. I asked her to give me a few seconds to get Miah and put the phone on speaker so we could both listen.
“Well, the cancer mass is not much larger than we thought - it's about 9 mm. But there were two new findings, at 11 o’clock and 12 o’clock. We need to biopsy these,” she told us, “We want to try to do both with the ultrasound guided method, but there's a chance we won't be able to see these areas with the ultrasound. We may need to do an MRI-guided biopsy instead.”
It sounded like I would go to the hospital, and they would look with the ultrasound machine. If they could get both samples, great. If not, they would send me to the MRI imaging center and do the biopsies that way.
“No, we can’t do both on the same day,” Surgical-Oncologist-Doctor L explained. “You’ll need two separate appointments.”
I thought about this. I didn’t want to go through the hassle of more appointments and the pain of more biopsies if I had a genetic mutation and opted for a double mastectomy in the end.
“What if I wait for the genetics results before proceeding with the additional biopsies?” I asked her, and then followed with, “If I have a mutation, I want to get the double mastectomy and just be done with it.”
“That’s a good question, I hadn’t thought of that,” she said. “I think that’s a really good idea. We should schedule the biopsy for a few weeks out, to allow time for the genetic results. I’ll put in the biopsy order, and someone will call you to set that up.”
We said our goodbyes and that was that. An hour later, the scheduler called and booked my ultrasound biopsy at the breast center, for Tuesday March 1. The MRI method would not be scheduled yet because they didn’t know if it would be needed.
After my evening walk, I called Peaceful-Comforting-Scientist A and we talked for over an hour. Just like Professor J, Peaceful-Comforting-Scientist A told me she had also been treated with chemotherapy. And just like him, her chemotherapy wasn’t awful for her either. She felt tired from it, but the side effects were not intolerable. Now I had three firsthand accounts of people treated with chemotherapy:
- Calm-Witty-Experienced-Manager M
- Professor J
- Peaceful-Comforting-Scientist A
I felt like I was getting somewhere with building Team Lorie and collecting the information I needed to be able to accept whatever treatment I was in for. Even though it was too soon to know what my treatment would all involve, I was at least rounding up a fine assortment of knowledge and moral support. It had only been 15 days since my diagnosis and I already had made progress by setting up and starting mental health therapy, reaching out to others, and putting a plan in place to reduce my workload.
As we continued to talk, Peaceful-Comforting-Scientist A told me about her friend who had recently been treated for an aggressive form of breast cancer. “She had it rough [with chemotherapy],” she told me. The more we talked, the more I started to wonder if I might know this friend. Our city has a relatively small network of life sciences organizations. A lot of us know each other from having crossed paths at different companies. I was Facebook friends with Warrior S, a past colleague from my prior employer. I also knew that Warrior S had been treated for breast cancer in 2019, because in the fall of 2019, I had written Warrior / Seven of Wands and dedicated the song to her.
“You’re not talking about Warrior-S, are you?” I asked Peaceful-Comforting-Scientist A, using Warrior S’s real name to describe her.
“Yes, that’s my friend. You know her?” Peaceful-Comforting-Scientist A asked me.
“Yes! We used to work together and are still connected on social media!” I told her. “I haven’t reached out to her yet, but when I get more information about my treatment, I’m probably going to message her.”
I asked Peaceful-Comforting-Scientist A to update Warrior S with my diagnosis the next time they talked. “Let her know, I’ll be in touch soon,” I said. We finished our call and I re-joined Miah in the living room.
“Peaceful-Comforting-Scientist A knows Warrior S!” I told him.
“Are you serious?! Wow!?” he couldn’t believe it.
How incredible these connections were just… there.
7:00 AM. Thursday, February 17, 2022. I was still managing my morning swims before work, but not as regularly as before. I always swam three times a week, on Mondays, Wednesdays, and Fridays. But now my routine was disrupted because I was having trouble getting a good night’s sleep. Even though it was a non-swim day per my usual routine, I decided not to get too hung up on the day of the week anymore. For the time being, I would swim on the days I felt well-rested enough to do so, and today was a good day for a swim.
I have a couple “pool friends” that I occasionally chit chat with. We know each other on a first name basis and share things like what we do for work, travel plans, and occasionally complain about the crowded pool lanes. I wasn’t going to tell any of them that I was dealing with breast cancer. It felt too serious and depressing and I didn’t want to give it too much extra attention or energy.
Contrary to my desire not to say anything about my cancer, on this morning, when I returned to the locker room after my swim and spotted my pool friend, Wise-Woman-YMCA P, standing by her locker, I opened my mouth and heard myself say, “Well, I won’t be coming to the pool for a little while because I have to have surgery soon.”
“Oh no, why?” she asked.
“I have breast cancer,” my voice said, not listening to my brain’s decision to keep quiet.
She stopped what she was doing, turned to me, and responded with a quiet, serious, tone, “I had breast cancer last year. I had a double mastectomy last January.”
“What, really?!” I was shocked. I had no idea anything was different about her. She and I had been pool friends for several years. In 2021, I had switched pools for a few months because the lane crowding made me angry. I had been driving one town over to the next closest YMCA for my swims. She must have been treated during that time and I never realized she was gone because I wasn’t there either.
Another woman entered the space, having just finished her workout upstairs. Her locker was next to ours. She overheard us talking but didn’t interrupt. “Can I get your phone number? I mean, would you be willing to talk to me about your surgery and treatment, if it’s not too traumatic for you to remember that?” I asked Wise-Woman-YMCA P.
She paused, appreciating my question about her willingness and my respecting that it might not be good for her to revisit that experience, but then quickly said, “Yeah, sure. I can talk to you more. Someone was there to help me, and I want to do the same for the next woman.” I pulled out my phone (cell phones aren’t allowed to be used in the locker room, and for good reason) and asked her and the other woman if they were ok with me using my phone to save her number.
“Of course,” they both were understanding. The other woman was now somewhat invested in the story. “I wish you all the best with your prognosis and surgery,” other woman told me. She also shared that she had to have surgery the previous year, and she understood needing to change your schedule and routine to go through recovery. I finished changing out of my suit, packed up my gym bag, wished them both a nice day, and told Wise-Woman-YMCA P that I would call her over the weekend. Then I headed back home to finish getting ready for work.
My body was buzzing with excitement as I updated Miah, who was finishing his pre-work morning routine, with this new development. “I just found out my swimmer friend had breast cancer and got a double mastectomy last January,” I told him.
“WOW, that’s crazy!” he was surprised and slightly in disbelief.
“I know it’s crazy, but it’s true! She said I can call her, and she will tell me about her experience and help me,” I told him.
Team Lorie was growing almost daily. My actions felt easy and effortless. I thought people would run from me out of sadness or fear, but instead, a flock of kind friends and strangers were suddenly at my side.
4:00 PM. Thursday, February 17, 2022. It was time for my reading with Psychic-Healer K. I switched off my work laptop, opened my personal one, and clicked on the Zoom link she had emailed me. Within seconds, the meeting portal opened, and Psychic-Healer K was magically right in front of me. She began the reading with her standard method, which was not unfamiliar to me because it mimicked my prior psychic’s method. They had both trained through the same center after all.
She zeroed in on several things, enlightening my perspective, “And so, what my guides are telling me is, um, I said, ‘Is Lorie gonna run out of time?’ and I hear ‘No’ and then what I hear is ‘Lorie has exactly as much time as she needs.”
“And I said, ‘Is this, is this gonna end Lorie’s life?’ and I see ‘No’ and the no comes in like really deliberately,” she said.
Next, she focused on my treatment plan and how difficult it might be, or how sick I might feel. “So there’s a couple things here that I’m noticing,” she squinted, then closed her eyes. “When you said ‘I don’t know if I can handle [cancer treatment],' I got really big 'oh yes you can.’” We both laughed.
She told me, “I think you are a powerful manifestor, and I think that ability is gonna really help you out in the coming time that you’re going through. Because what I’m getting is, when you said ‘I don’t know if I can handle it, I don’t know if I wanna go through it, like how bad am I gonna feel?’ You know what I heard? This is so funny. I heard, ‘She’s gonna feel as bad as she wants to.’ So, what that means to me is, you have control. You can direct how this is gonna go.”
The reading continued for nearly an hour and a half and finished with Psychic-Healer K leading me through something called a “mock-up,” which was essentially a visualization of my treatment using all the best-case scenarios. I felt lighter and empowered and was grateful for her time.
Friday, February 18, 2022. I wanted to review our financial situation. Miah and I had started our retirement savings plan about 10 years earlier, and our past financial advisor had said not to live in fear of the unexpected illness or job loss. “Deal with it if it happens, but don’t worry about it,” he told us.
But I was never able to accept that mindset and live worry-free. I wanted us to tuck away a large emergency fund and save way more than we needed because I expected to become permanently disabled and unable to work at any point in time.
Well, it seemed I was right not to get comfortable. I wasn’t even to my mid-forties, and now here we were, just as I had feared, facing a serious illness, one that could potentially put me out of work for a long time.
I emailed Financial Planner C. My employer had connected me with her several years earlier as part of their wellness program, which includes financial health. Financial Planner C emailed me back within hours and we booked a meeting for a week and a half later so she could review our savings plan and help us have some peace of mind navigating any financial impact.
Sunday, February 20, 2022. It was another sleepless weekend. I would feel so tired as I got into bed and turned out my light. Just after I tucked myself under the powdery-soft sheets and rested my head on the feathery-light pillow, a zinger of recognition would slice through the twilight state and jar me awake with the thought, “I have cancer, and I don’t know what’s going to happen to me.”
I thought about calling my Childhood-BFF T. “She’s a nurse, she works in surgery. She can tell you all kinds of helpful things,” my brain said.
I still didn’t want to give extra attention to the cancer and calling Childhood-BFF T meant I had to focus on it a little more. Even though I had convened a small flock of supporters, I didn’t feel like I was officially recruiting new members. I was just acting whenever I felt a nudge or pull to do so. On this morning, once again, just like the other day at the pool, my body acted when my brain said, “don’t call.”
I texted Childhood-BFF T and typed that I was just diagnosed with breast cancer. I was sorry to share the news in a text, but I didn’t know the best way to get her the message since she is a busy mom, working a full-time job. Two hours later, she called me. It was a helpful call. I told her I was having trouble with anxiety and sleep, but I didn’t say anything to my doctor because I didn’t want to appear drug-seeking. Childhood-BFF has worked in direct patient care in the healthcare system for over a decade, and she has seen many patient charts. She told me that many cancer patients need supportive medicine for anxiety and sleep. “It’s very important to get good restorative sleep, especially to prepare your body for surgery,” she said.
We finished our call, and I spent the rest of my day working on plans for The Music Tarot. Now that I had a release schedule to adhere to, I needed to get moving and make some promo videos. I tried recording a video of myself and it came out horribly. I looked and sounded fake; like I was trying too hard. I couldn’t understand how TV personalities do it so flawlessly. I decided to give it another shot (literally) next weekend, and called it a day.
Monday, February 21, 2022. I thought about what Childhood-BFF T had said about getting good sleep. I was hesitant to request medicine to deal with my insomnia and anxiety. But Childhood-BFF T had made a good case. Maybe I wasn’t taking the easy road out asking for supportive medicine; maybe I was doing the smartest, best thing for my body? I emailed my primary care provider explaining that I needed some medicine to help me sleep. We settled on continuing with the clonazepam as needed for sleep or anxiety. She sent in a refill for 20 tablets. I decided to use the medicine sparingly, not every night. I didn’t want my body to get dependent on it. If I could sleep through the night occasionally, I would be well enough.
Meanwhile, it had been 11 days since my genetics blood draw. Genetics-Counselor P had told me I would get the results in 7-10 days. I wanted to know the results already. Fortunately, she had given me her business card with her cell phone number written on it and said, “Call my cell anytime if you have questions.” I called and left a voicemail.
My brain had gotten stuck with the notion that I wanted to have a genetic mutation. This would make the surgery decision easier. It would also offer an explanation and root cause for the cancer – rather than just be a completely random event caused by any number of things.
Unfortunately, my wish was not my command. Genetics-Counselor P called me back that afternoon and told me there were no genetic mutations present in the panels they ran for me.
I was worried about what this meant. Now I needed the additional biopsies. Now I didn’t automatically qualify for a double mastectomy.
I sent a message to Surgical-Oncologist-Doctor L.
Subject: Question about surgery plan
Message: Hi Dr. L,
I just received the genetic results, which are negative (good), but now I need those other biopsies (bad). I've been thinking about my surgery plan, and I wanted to ask you if my long and painful history of medical issues can be considered as a "qualifying event" to allow me to bypass this additional diagnostic stuff and just go with a double mastectomy?
I realize it is a major surgery and a permanent major alteration to my body. But I also realize that if we end up going the route of lumpectomy, there is a chance I'd eventually end up with a double mastectomy anyway and would then have to endure 2 surgeries.
There wasn't time for us to go through my full history, but I've had issues with chronic pain since age 12 and as you know, I was seriously considering not fighting this cancer because I'm so tired of hurting. I've since had mental health therapy and changed my mind - I'm in this and going to treat the cancer and survive. But now I'm focused on the best plan for me personally, based on my unique history and needs.
Could you please get back to me with your thoughts on this? Meanwhile, I still have the ultrasound biopsy scheduled for Mar 1 and will proceed with that as planned until I hear otherwise.
Thank you.
Tuesday February 22, 2022. I received a message back from Surgical-Oncologist-Doctor L.
“Lorie,
I understand your concerns and perspective. I will plan to call you in the next 2 days to review your thoughts and provide discussion around the pros and cons of these approaches.
Regards,
Doctor L”
Wednesday, February 23, 2022. As promised, Surgical-Oncologist-Doctor L called me back to discuss the qualifying events for mastectomy. Again, I put the phone on speaker so Miah and I could both listen. She really did understand my position but told me that jumping to a double mastectomy wasn’t the best option, especially because people with pectus excavatum tend to have more chronic musculoskeletal problems post-mastectomy. “They also tend to find it looks more disturbing,” she said.
I didn’t want to be disturbed by what I saw when looking in the mirror. Also, the thought of more chronic issues were terrifying. I was angry it wasn’t a simple decision, and I had to go through another biopsy. I told her I was worried about the biopsy pain. My first biopsy hurt me more than I was expecting.
She agreed to prescribe me a small amount of stronger pain medicine. I was grateful to have the tablets on hand, but the dose was way too low. Surgical-Oncologist-Doctor L didn’t know my chronic pain background and opiate tolerance like my primary care provider did. I was trying to navigate the pain management without appearing drug-seeking. I figured I would just deal with it as best I could, with the lower dose. At least it would take the edge off, I thought.
Thursday, February 24, 2022. Champion-Cleaner A walked up our driveway and met Miah at the front door. She was there to interview for the cleaning position. Since posting the position on Care.com the previous Tuesday, Miah had emailed back and forth with several candidates, and eventually settled on Champion-Cleaner A, who is a breast cancer survivor herself.
The three of us sat in the living room and chatted for about an hour. Even though she was there to help us with housecleaning, I wanted to know Champion-Cleaner A's experience with breast cancer. “I’m an open book,” she said, happy to share her story.
I learned that she was approximately 6 months younger than me and had gotten her cancer diagnosis 5 years earlier, when she was 38. Her surgeon was Surgical-Oncologist-Doctor L, and she was treated by the same health system as me! She had undergone chemotherapy, surgery, and radiation. The treatments were not horrific for her; she just did them as prescribed. But her mind was marred with post traumatic scars from her 14-months of treatment.
She seemed healthy and well, but I could tell she was traumatized. I wanted to cheer her up and help her feel better. I gave her a tour of the house and described my cleaning routine for a baseline to work from. Everything seemed straightforward, and Miah and I both felt that we could trust her to do the job, so we scheduled her to start the following Friday.
We had now hired an independent contractor to begin housecleaning services, booked an appointment with a financial advisor, and arranged the next diagnostic biopsy procedure, and all were scheduled for next week. February had been an action-packed, emotional whirlwind of unplanned disturbances. But the ship hadn’t sunk. Miah and I had righted our course at least for the time being, just enough to peer crookedly into the binoculars of time and see what we hoped would be a predictable week ahead.
![](http://d10j3mvrs1suex.cloudfront.net/u/589923/bb80ef3a851fc5225b0148b57a514c6fa7c6310a/original/blog-7-genetics.jpg/!!/meta:eyJzcmNCdWNrZXQiOiJiemdsZmlsZXMifQ==/b:W1sic2l6ZSIsInNtYWxsIl1d.jpg)
End of 7 - Genetics Part 2