These is a long and long overdue update. I’ve just posted this on my “lotsa helping hands” community page, but I know many of my international friends are not on that app, so I’m cross-posting here with minor edits.

Last week Friday was chemo day, but in the morning beforehand I had my post-surgery/pre-radiation therapy (RT) mammogram. It’s always the “here’s a warm blanket/go in that room and talk to the doctor about your results” that make me go “uh oh what now?” My mammogram showed some calcifications which really could be ANYTHING: likely benign, maybe left over and wasn’t removed during surgery, maybe more cancer. Nothing is really expected to change: I’m already in chemo, I’m already doing radiation; meaning, I’m already in active treatment. More treatment is not more when I think of treatment as binary. Either I am in or I am not. If that makes sense.

I always have a BI-RADS4 or 5 imaging result since this whole thing started, so I needed to do a biopsy stat! and there just happened to be an availability that same afternoon during my scheduled chemo. “We don’t know anyone on the 4th floor chemo bay” the imaging team on the 3rd floor said. I then say, “oh leave it to me. I got this”. I was going to go upstairs a few hours earlier than my chemo appointment anyway to bring the chemo nurses the chocolate swiss rolls I baked that I didn’t really want to carry around with me on my other appointments that day. I went upstairs and they were able to accomodate me, essentially saying, just come when you’re done with your biopsy. I also reached out to the medical oncology team on the 3rd floor to get them to move my appointment with my med onc. I went to my port (blood) draw appointment early to see if they can squeeze me in and make sure the labs are ready in case I move my med onc appointment early. I then told everyone that I’d be on the 3rd floor Central Waiting Area eating lunch and doing arts and crafts (trying to calm down) while they figure out my appointments and make sure they can accommodate my last-minute biopsy.

What I had was a stereotactic breast biopsy. Listen, mammogram: really painful. This biopsy is a mammogram plus a needle, so it’s twice the party. By the time I finished and headed over to the chemo floor I was, uh, stressed. My poor chemo nurse trying to warm me up/cool me down, make me comfortable, worry about my blood pressure — and she didn’t even get to have any of my baked goods because apparently they disappeared so fast! Nurse was trying to give me ativan both for the nausea (off-label indication commonly given to chemo ptx) and my anxiety. But I’m that optimistic person who thinks chemo is a breeze now, and drove myself to the hospital, so I’d have to drive myself the, albeit, short distance home. But maybe best to skip the chemo with the narcotics?

I wasn’t actually worrying about the mammogram findings because like I said it doesn’t change the course of my treatment that much, but it has the potential to delay my radiation therapy start. I was supposed to start tomorrow (Tuesday 5/2). As for now, we’re planning on starting on 5/3 as soon as they get the biopsy results they’d asked pathology to expedite. So, I’m likely (hopefully) starting radiation this week.

How long will radiation be? Well, there’s enough data now (i.e. there is up to 10-year progression/recurrence free survival clinical data) to indicate that outcomes from 15 fractions (3 week treatment) are comparable to the once traditional 6 week-treatments. There’s also now 5-year data (no 10-year results yet) from the FAST-Forward study out of UK indicating that 5 fractions is non-inferior to 15. My rad onc said if she can find a suitable plan from my scans to support 5 fractions (corresponding to 5 treatment days) we’ll do it. So, I’m hoping she’s successful. In addition, after radiation treatment of the whole breast, additional radiation concentrated on the tumor bed have been found to reduce the risk of recurrence in high-risk breast cancer per ASTRO (American Society of Radiation Oncology) evidence-based guidance. This “boost”, 5 days addition, will be recommended to me by my rad onc depending on the volume of the breast tissue that could be receiving the dose. Long story short, my treatment might be 5 + 5 (2 weeks daily, M-F) or 15 + 5 (4 weeks daily, M-F). Every treatment can be as short as 15 minutes. They even gave me a free street-to-treatment room gown I can wear. It’s hideous, but I appreciate the sentiment and know that efficiency is key in RT. That’s quite different from the chemotherapy experience with its massage chairs and warm blankets, and nurses who try so very hard to make you comfortable and chat with you enough to remember your life story — and sometimes you learn and remember theirs too – there are many former cancer patients in the nursing staff on the chemo bays.

If RT strives for efficiency, chemo strives for comfort, how about the surgery? Goal is be free from pain and have incisions that heal nice? I’m being flippant. I have had great care all around. I have very few complaints. I have some but I don’t think it’s much their fault. This would be that Project Managing my treatment is a full-time job. I don’t mean the actual treatment — that is its own beast altogether. I mean the planning. Bold assertion, I know. I already told you about all the “PMing” work I did at the hospital on Friday just to line up all my treatments. But today, Monday, I received no fewer than 4 phone calls, more than twice as many messages and replies on the online personal medical information page, and several of my next 27 (!) appointments already scheduled moved so many times today that I wonder how other people plan treatments and visits, recuperate, live lives, stay sane. Cancer is a costly, fascinating, demanding, infuriating, and yes, scary entity-thing. Sometimes I have to practice more patience than the scheduling team — often, they do. More than I ever can, possibly. I PM full-time at work already. My health isn’t supposed to be a full-time project too. But right now, it is. And I am not exactly 100% sane these days. I am a crumbly, anxious, scared patient. Mostly I think I am just very, very exhausted. Some of you might know that there has been some upheaval in my home life, and I have been going at it alone since pretty much January. I have been supporting some family members, but they aren’t able to support me back. It’s disappointing.

BUT I have had some people who have been there! My friend Carola paid to have her cleaners come and clean my whole house. I am a clean/neat person, but keeping a pristine household while unwell, so important but nearly impossible. I am so grateful. My friend Eva took my Kimo cat in the week I went on a work trip. I was happy to feel like a normal person and go on a work trip, but it would not have been possible, this happiness, if I didn’t know that my cat is so happy at Eva’s. My niece, Alex, took time off work, paid for her way to fly to me and stay through and a couple of days after surgery. Many of you have checked in on me, comforted me, made me laugh, sang karaoke with me, filled in my inadequacies — and more importantly talked to me about your life! We talk about mine enough. I am going through a journey… I am not infirm, but I am less than the me I’d like to be. That’s probably ok right now. Anyway, yes, I don’t need much, but I would love to hear from you. Come reach out to me and let’s talk about you!