Last time I posted at the end of August, I had passed responsibilities off to my brother to hilariously recount our siblings trip to West Virginia. Well, it’s back to me for an update of the past couple of months.
Sidenote...posting is interesting. The continued march of metastatic disease, with far fewer checkpoints, 'finishings', etc is mentally challenging. Information and changes come in chunks, a bit at a time, rather than big revelations. And, sometimes change day to day, week to week. So to try to summarize nicely is tough. And, as I'll expound on more later, energy hasn't been high, and so at times, it's far easier to just avoid posting for the sake of mindless tv, a bit of extra rest, or whatever. This is all to just say at the start that my lack of posting doesn't indicate a lack of appreciation for all of those who I know are in my corner. I thank you all. A lot. The mundanity (oh good, that is a word, I just checked) of my life, my life as a stage iv metastatic breast cancer patient doesn't always seem worth sharing. But I do, as I know folks care, and it does still bring some catharsis...or if not, at least a nice summary and review for my own sake.
So, what’s been going on?
Classes resumed and I got back to work even more full-time than during the summer. I’m only teaching one class given the research grant buyout money relieving me from my normal other 2 classes. I like my job. I really do. There’s generally multiple times a week where something happens that makes me really feel like I’m making an impact (generally positive!). It’s not without its frustrations, as any job (or really any experience, right?) has, but typically, the frustrations are outweighed by what I enjoy about it. So the return of classes, more meetings, etc. has actually been welcomed. (full transparency, I drafted this paragraph a few weeks back...it's still true).
I'll hit the highlights/important stuff chronologically then go into a bit more of the "how are you feeling" topic.
Where I was at...after getting back from Africa in July, I started Ixempra infusions, another chemotherapy treatment. I handled the drug pretty well (remember I had treatment right before siblings raft trip), in part due to the extra steroids.
Port Placement - Soon after classes started and after my first dose of Ixempra required multiple tries to get an IV in my arm, I made the decision to have a port placed. Whether Ixempra worked or didn't, I'd be on infusions (of it, or an alternate drug), so it only made sense to be able to have easier access. So September began and I was at the hospital for the outpatient procedure. It went well (god I love twilight sedation...I've said it before and I'll say it again, it's probably a good thing I've avoided doing drugs most of my life). Thanks to the support system I have here in town for getting my there and back.
Birthday - It was low key, but enjoyable, and at this point, I'm just glad for each additional trip around the sun. Also we had a meatloaf party which is so Midwest, and was pretty amazing.
KWF Fun Run - I was able to join my friend Amy and complete the 5K sponsored by Karen Wellington Foundation, the group that sponsored our siblings trip. It was a beautiful day and nice to complete the walk.
Mid-September - A friend was in town and treatment #3 on September 14 hit me a little harder on the backend, with a bit more fatigue. Or, I just don't have the stamina to be able to pull days of 7am-8pm activity multiple times per week.
DVT - After the 9/14 treatment, I was having some swelling and pain in my right arm (the 'good' arm, not the one lymph nodes had been removed from). I tried to tough it out for a couple days, monitored to see if it got any better, which it didn't. So the following Monday (9/19) I went to work and called the doc. They wanted me to get an ultrasound right away, so I headed to the hospital. I wish I could have had my head turned the other way during the exam, but it didn't take long for the results to come through MyChart and show that I had a deep vein thrombosis in my right subclavian and internal jugular veins.
DVTs are essentially blood clots adhered to the side of the walls of vessels. It makes blood hard to get through, in this case, causing some backing up and swelling/dilation of my veins (you could basically see them all in my arm). The risk of these is less about the clot/flow itself in most cases, and more about if the clot is to dislodge and travel to the lungs where it can cause a pulmonary embolism. Anyone who is a dork like me and thoroughly read the inserts in the back of planes about why you should move your feet on long haul flights is familiar with this. Fortunately, for upper extremities, unlike the legs, this risk is more minimal.
So, after calling my doc with the results, they sent me to his office, where he promptly wrote me a script and had me start taking blood thinners. The blood thinners don't actually fix the DVT but make it easier for blood to get around it. It helped with symptoms (pain, swelling), and while there is still some visible dilation, seems to be working well enough. I'm not sure if it's a permanent thing that I'll be on or not, but for now, another pill to add to the morning routine. Kudos to the efficiency of my team, as I went from phone call to ultrasound and treatment in just under 4 hours. The DVT was likely caused by an issue with the new port, though it's not overly important why it happened. It was a "good" reminder that I'm not invincible and this shit is serious. And the week was just starting...
CT Scan - As per usual, after 3 months/4 cycles of drugs, we would do a CT scan to see where things were at and whether the Ixempra was working. So on Wednesday, September 21st, I did my routine thing, laid on the table, breathed in, held, relaxed, experience the 'down there' rush of CT contrast, and then began to monitor my phone for the impending MyChart notification of results. I didn't have to wait too long as they came back that afternoon.
Fuck.
Fuckity fuck.
Progression in the lungs (not really surprised). New spots in the liver? God. Damnit. Oh, and that rib pain I had that one set of xrays didn't show anything? Well apparently they weren't the best view because I have healing fractures of the right 5th and 6th rib (thanks cough).
Well, shit. Another missed arrow from the quiver.
Camping and Thinking - The following weekend, I went up near Cuyahoga Valley National Park with my colleague Diana and her family for some camping and hiking. My dear friend Erica drove down to join us from Michigan. It's a really nice park with some beautiful areas, and the time in nature was much appreciated. And it totally wore me out. Just short 2 mile slow hikes, sleeping in a tent and I was wiped. This isn't the person I thought I would be, nor do I want to be, but apparently is who I am. And the combination of the fresh air, the hikes, the conversations, and some sleepless nights listening to the rain really got me thinking. Or thinking more rather. Specifically about work, how I feel, what it should look like in the future, etc.
. 
I had previously looked at our benefits regarding medical leave (they are pretty generous) and had a few conversations with folks about what the future might hold. This trip sort of solidified to me that my stamina is just not where it needs to be for me to give my fullest effort in the way I want. And, the continued coughing, loss of voice (totally lost it at a work meeting in DC in late August and its never fully recovered, still a little scratchy 900 number sounding) make teaching challenging. The unpredictability of how I will feel on any given day is hard. Having students that rely on me at a specific time/place is tough. Now, let me say and make VERY clear that I realize this is a SUPER privileged position and thing to say. Pretty much all jobs require you to be somewhere, doing something, at specific times. I am really really lucky to have a flexible job with a lot of autonomy. I get that. We all make choices, and that flexibility and autonomy is a big reason why I chose to work where I do.
The combination of the recent scan news (I hadn't met with my doctor yet, but it's clear it's in the wrong direction), the DVT, the increased fatigue, frustrations with some aspects of work, it all kind of came to a head. When I got home from the camping trip, while I still had the clear thought that nature provides in my head, I started to make some moves....sending some emails and scheduling some meetings. Essentially, updating and letting the people who needed to know that I needed to seek some change. I needed to be able to explore what my options were for reduced/altered work, for stepping back from some things research and teaching related while still continuing to work and contribute. I am so, so, so grateful for the support of the people I work with, especially our senior administration, who I've worked closely with on administrative/institutional efforts this year. All agree that my health and wellbeing are a priority and are willing to work to make sure that I'm able to take care of myself. Whether that means taking the extra time to seek alternative treatments like acupuncture, traveling to feed my soul, or simply not engaging in work that is less fulfilling. I realize that it's my hard work and contributions that have helped earn me these privileges and support, but I am still so incredibly grateful.
So the wheels are in motion. I have some paperwork to do things like get accommodations for things like an all lot parking pass if driving vs walking to meetings helps. I know what my benefit options are, important dates, timeframes, etc. I won't teach in the spring, as I'm not sure I'm capable and who knows how those 6 months play out. The discussion of what work looks like next semester, when I won't be teaching are in progress. It is hard to step away from the classroom, but I'm not satisfied giving less than my best. I also know there are other ways in which I can use my talents and what energy I have to contribute. I'll continue to do the things that give rather than drain my energy.
September wasn't over, nor were the 'big events'
Tucci's Passing - Folks who know me, know that my grandma, 'Tucci as we call her, was stubborn (or 'determined' may be the more polite word) in good ways and bad. She worked into her 80s, lived alone into her 90s, loved her Chicago, and always had food ready. Since last Thanksgiving-ish, she had been with my mom in Arizona, as her health and cognition made living alone not safe/ideal. My mom is a saint for the work she did caregiving for her. After Tucci turned 96 in late August, she started to decline, as 96 bodies often do. In the end, my mom gave her the opportunity to pass peacefully in bed, at the house on Monday, September 26th. Thus began a logistical dance of transporting the body to Chicago, planning services, arranging for family travel from across the country and globe (my cousin is in Milan, Italy). It was actually really nice to see everyone (most...not all kids and spouses made it because of various obligations, reasons, etc though all were there in spirit), the cousins getting together for the first time in a decade, since the last family funeral. Family friends came who we hadn't seen in years, and the strength of those friendships never ceases to amaze me.
Doc Visit and Plan - Prior to leaving for Chicago, I saw my doctor to discuss the CT results and next steps. While he was obviously disappointed in the CT results he was actually encouraged by the plan. If you remember I've always described my cancer as ER/PR positive and HER2 negative (in fact this was how I described it in class when I gave my endocrine/cancer lecture that yes, actually just happened to be timed for this same week! Love that timing!). The HER2neu protein can be measured in a couple different ways, one that yields a positive/negative result and one that gives a 0, 1, 2, 3 (3 being positive, others equivocal or negative) results. Typically patients were only treated with drugs targeting HER2 if they were positive/3. Up until a recent clinical trial where they treated patients with prior chemo treatment who were ER/PR+ and "HER2 low", those with 1 or 2 levels and found good success (extended progression free survival by 5 months and overall survival by 6 months, being effective in about 60% of patients which for the cancer world is pretty great...like standing ovation when they announced the results at a cancer conference great). The drug, Enhertu, is also tied to an antibody (something that can match up to the cancer cells), so fairly well targeted to reach the cancer cells. It's an infusion, albeit much shorter (90 min first time, 30 min after), with fairly well-tolerated side effects. So that's the plan. Doc is encouraged, excited. I'm not holding out hope, though the whole "stay alive till they find something new" might be true with this one, as it was just recently FDA approved in August.
First Dose- So after arriving back from the funeral services, on 10/5 I had my first Enhertu infusion. It went fine, with no adverse effects. Afterwards I was dealing with quite the "pharmacological storm" as one friend called it, as I also got my flu shot, then had a UTI and was on antibiotics, so wasn't 100%.
MN Girls Visit- Some dear friends from Minnesota made an impromptu quick visit thanks to birthdays and cheap flights. It was fairly uneventful (other than wearing these badass shirts that we found on etsy), mostly just hanging and chatting. Which, was, perfect. I wasn't up for much more, and it was great to just 'be' with these ladies.
Boston- After a week of work, I was off to a planned visit to Boston to see my niece, a freshman at Tufts. We attended a concert, did some touristy things, ate way too much good food. I was pretty annoyed/disappointed/pissed off about my fitness/fatigue levels preventing me from my normal 'walk everywhere!' mindset. But I guess grateful for Lyfts and a patient niece. It was great seeing her in her new element, and I always enjoy a visit to big cities.
And that catches us up to today. Our students are on break and I decided to take the day to rest, recover, and just be, before getting back at it. We had some semi-major announcements via a town hall at work this afternoon that set a vision for the institution that I'm proud and grateful to have been a part of working on for the past few months and look forward to hopefully being able to contribute to working on more in the future.
My cough is still here and still sucks. A lot. I get tired easily and it's difficult to prioritize activity, as it gets hard, even though I know it would probably help me. I'm trying to process what 'stepping back' really looks like and how to actually do it moving forward. For now it's mostly not berating myself if I come home at a reasonable hour and rest in the evenings and don't do work on the weekends. There are holiday plans to figure out, and I go day to day feeling good and hopeful vs wondering if the next coughing fit could be the last.
Coming up, I have some more friends making a visit (this time grad school friends from Colorado) and then looking forward to Thanksgiving with family in a location to be determined. Fall is beautiful in the midwest, with the reds popping with the yellow and green leaves. I kind of forgot about it since I was in California for 2 weeks at this time last year.
We wont scan again until probably December, so till then, it's wait and see...
(oh, and PS, October and the pinkwashing and all that is fucking annoying. See my friend Amy's blog post on why for us metastatic folks , including the places to give if you actually want to support research, or MBC patients rather than just having pink shit.)
