Sunday, November 1, 2020

Sometimes I Hate Being Right...

 Actually, that's a lie.  I unfortunately base too much of my self-worth on competency so I actually very much enjoy being right.  

But being right about cancer stuff isn't nearly as much fun.  

I was right when I thought that the scan would show progression, and turns out I was right about what the next steps would be.

I start infusion chemotherapy on Friday (pending all necessary approvals and such).

I moved up my appointment that was supposed to be this Wednesday, 11/4 to Friday, 10/30.  Wednesday or Thursday, the full report of the CT was posted to my electronic chart.  It didn't say much more than the general impression of "worsening metastatic disease".  There were a few measurements and comparison to last scan, but with different radiologists doing the read, there's a bit of variance, even there.  So I needed to talk to my oncologist for the bigger picture.

I was one of the first appointments on Friday, in the morning.  I'm a subscriber to the "fake it till you make it" mentality, so even though I was a bit anxious, nervous, and irritated, I did my best to be friendly with the phlebotomist and medical assistant and even asked my doc how his mom was after hearing she was preparing for surgery.  Ok, chit chat over.  Let's get down to business... (to defeat....the huns...)


 "Well, I'm not happy"  "Yeah, me neither"

"It's not exploading, but it's growing"

"We need to get it to respond."

"Here are our options."

Or something like that...it's a little hard to remember the details.  I asked questions along the way, mostly asking him to check my 'doom and gloom' mentality (aka he said response is actually regression, not just stopping the progression)

Basically, we're at plan C...chemotherapy and since the oral didn't work, on to infusions.  It's been nearly 5 years since I was first treated so the cancer cells are likely 'not accustomed' to it and will hopefully respond.  Of the options we reviewed, one is harsher, given once a month, another is different and given once a week for three weeks, each month.  I'm so grateful for a flexible job where I essentially set my own schedule 85% of the time, so opted for the less intense, more frequent option.

The drug is Abraxane, or paclitaxel, part of the taxane family of chemo drugs.  For those who remember the first treatment course, after my initial 4 rounds of doxycycline and adriamycin I had 12 rounds of Taxol. The worst part of the taxol was that I had allergic reactions so had to take steroids beforehand and get an iv dose of benedryl during treatment.  As much as I enjoyed the induced napping, I didn't love being on steroids.  One of the benefits of Abraxane is that rather that having to mix the taxane with a solution that tends to promote allergic reactions, they actually suspend it in albumin, something that's normally found in the blood, and that allows it to be mixed with saline and infused.  Have I mentioned that science is cool?!?

While the more frequent Abraxane may be "chemo-lite", it's still chemo, going after dividing cells, with fairly little disregard for whether they are "good" ones like white and red blood cells and hair follicles or "bad" ones like these stubborn lung nodules.  So side effects are likely. The reduction in white blood cells (neutropenia) is pretty consistent, and anemia (low red blood cells) is common, though somewhat less so.  Fatigue and nausea too, though hopefully even though I'm 5 years older, my age and relative strong health otherwise will help keep those at check.  Hair loss, the classic "look at me I have cancer sign!" can occur.  It can range from thinning to full loss, so I guess we will just see.  Last time, I had regrowth durign taxol phase, so who knows.  I probably won't go really short until I know that a real amount of loss is going to be a thing.  At least I guess it's going into winter and I still have all the hats and head scarves from last time.

 

Damn, maybe I should have kept those clippers...

One of the biggest questions I had for my doc was how this might interfere with my Escape Ohio plan for Nov-Jan.  We looked at the calendar and saw we can get 1 round of treatment in before Thanksgiving.  But, he wasn't comfortable (and I don't really blame him) with me taking 6 weeks off after that.  So I may be rearranging travel schedules, or trying to take infusions in CA or AZ.

Now I know, especially with rising cases some people are probably wondering about COVID and Cancer.  I'm not an idiot, I asked.  I may be willing to take calculated risks, but I'm not going to be totally careless about my well being.  Doc said he hasn't had any of his patients who are in treatment get COVID but early reports suggest that there isn't any crazy interaction between chemo drugs and COVID, so the risks remain the same.  Taking precautions while traveling to reduce risks, quarantining, seeking medical help if needed, blah blah.  And the same goes for teaching at work, going to the grocery store, etc.  So even with some decreased immune cells projected, I don't anticipate much change to the daily life. 

On my way out, I did ask (because this is the direct way I communicate with him) if this might be my last Christmas and I should just say 'screw it' and do what I want, travel-wise.  He told me not to think like that and so remains hopeful that if we can pull out some big guns to stop growth, we could move into a longer-term maintenance treatment regimen at some point.  

And then I went to work.

I cancelled a couple student meetings (they are so understanding) because I just wasn't in the mood.  I looked out at the next few Fridays to see what adjusting would be needed once I got my treatment schedule.  Fortunately, the infusions are just over a 30 minute period so should be fairly quick appointments.  Once insurance approves things, they'll get scheduled.  

Speaking of insurance, my morbid thought of the day the other day was to take advantage of the really reasonable supplemental life insurance that we offer (it's open enrollment right now).  I still have the morbid thoughts.  And I probably should.  Even when you look at the numbers, they are still bleak.  This Abraxane drug? 30% response.  And the response? Increase in survival by months.  There are other options still out there...some of which I discussed with the doc.  Things like clinical trials and less traditional therapies but this is the next step in the traditional line.  I sent a note off to Indiana University to check on setting up a telehealth with the breast specialist I saw for the clinical trial out there to consult.  Waiting to hear back on that.

Even though I consider myself a well-prepared patient, there are things I forgot to ask that I'm still waiting to hear on.  I don't know if we'll put a port back in or just do normal antecubital (elbow crease for my non medical friends) iv access.  I also don't know how many rounds we are planning to do, or planning to do before scanning (which likely may influence the need for a port).  

Mentally, I allowed myself a bit of a pity party over the weekend.  I played games with friends Friday, watched "scary" movies all day Saturday (though did force a walk by inviting a friend), and chilled out Sunday morning.  I ate too much, but I didn't care.  I get to.

The response to my prior post has been as expected, lovely, as there are some really fantastic and giving people in the world.  Thank you all!  I have the Marianists praying for me and many others.  And, while that really isn't my bag, I appreciate it.  

My family decided to to Inktober, a drawing challenge of a new picture each day based on a common prompt.  It was really fun to see everyone's pictures, styles, comments, etc.  It may be a dark sense of humor/reality but the prompt on Friday of 'ominous' just seemed too fitting for me.

 
It might be ominous but it isn't over.  A friend asked how I was feeling and I commented that I go through the 5 stages of grief (denial, anger, bargaining, depression, and acceptance) generally in a matter of minutes (ok, the depression one probably resurfaced over the weekend, but whatever).  In general, I'm at acceptance.  I accept that this is what I need to do, this disruption, this change of plans, in order to give myself the best chance and making more plans in the future.  
 


Sunday, October 25, 2020

Productive Procrastination - Updates

 I like to productively procrastinate...in other words, to do something that feels 'productive' in order to avoid something else that I should be doing.  

What should I be doing?  The grading I came to the office to do.  I'm behind (which pretty much every academic says and in reality, I'm probably ahead of others, but I'm behind my standard).  Why? Well, honestly, grades seem a little silly during a pandemic as our students are balancing everything they are.  I do it because I have to, and it gives them some sort of benchmark for their work.  Frankly, I'd rather just say, give yourself the grade you deserve.  And yes, to my pedagogical savvy friends, I know this is a way to assess and whatnot but let's be honest, I'm not shifting that drastically right now.

What am I going to do instead?  Well, provide an update (of sorts), probably dump a little, and hopefully also remember why I really did enjoy blogging 'first time around'.  

It's been about 4 months since I last posted.  Classes started.  Online to begin while our numbers spiked, but we're back to some face-face blended courses now.  I'm teaching face-face as my risk isn't that elevated and believe in the protective measures we have in place (distancing in classes, masks required everywhere, etc.).  But COVID is still very real and a black cloud above my head on any given day...just like most others.  This past Friday was a harsh reminder of that...

Soapbox Moment: Have you voted yet? Was it for Biden and dems pretty much down the ticket?  If so, great.  Thanks.  Appreciate it.  If it was for Trump and "republicans" and you know me, we should probably have a conversation about why we are friends, as we may have very different values and may need to reevaluate our friendship.  Go Vote.  Vote Blue.  

  • I had about 12 advising appointments with students Friday.  I bitch about these appointments and they are A LOT of work (~45 hrs worth this semester...when I couldn't stand creating more unrest by switching things around for some students, coming off of a higher advising load while interim chair).  But, I really do enjoy getting to connect with students 1-1.  What do I not enjoy?
    • Hearing the tears of the student that is really struggling with the pandemic.
    • Hearing about an inability to get transcripts released, needed for graduation, because of financial difficulties due to job loss due to COVID.
    • Hearing students politely explain the difficulties of disorganized, disengaged professors (unfortunately, there are a few)
  • There was quite a bit of other "B" (remember my ABC's?) related to work nonsense (even just Friday!).  I haven't done as good of a job in avoiding the B.  I've taken a stand on a couple things, but let's be honest, it's a little unavoidable in a modern-day workplace, right?  Serious shout out to the people in the know who listen to my ranks, serve as sounding boards, and help with this.  You know who you are, and I'm eternally grateful.

All of the bullshit of Friday came after I went in for a quick CT scan that morning.  Apparently, I had the date wrong, but grateful they were able to squeeze me in anyways.  Why was I getting the CT?  Well, let's lead into the medical update portion of the post... 

In June, I told you I was on Palbociclib/Ibrance, the drug I had done in clinical trials, along with Faslodex/Fulvestrant.  Ibrance is in the CDK4-6 inhibitor category of drugs that has been a relatively major 'breakthrough' in metastatic cancer treatments.  If you want more info, this hour plus presentation is pretty good (and yes, I'm a weirdo that watches shit like this, along with chiropractic videos (I've moved on from pimple popping) to fall asleep at night).  

In July, we re scanned to see how I was responding to this first-line, hormone/targeted therapy. And...

Whomp, whomp.  

 Damn.  Well, ok.  I had a telemedicine call with my doc (talk about being in my comfort zone! On multiple screens, with my own research on next steps pulled up. I loved it!). And we discussed what the next steps would be...

  1. Get a biopsy of the lung metastases to confirm they are the same tumor type (Estrogen receptor positive, HER2 negative) and get a sample to be sent for further genetic testing.

WHY SCIENCE IS COOL SIDENOTE: The amount of information we have on genetic markers and subtypes of tumors now compared to when I had my surgery in 2015 is incredible.  Science is cool.  It works.  But it also needs funding.  Did I mention you should vote for people who believe in science/aka not Drumpf? 

       2.  Assuming that the lung biopsy wouldn't change much, and the other hormone therapy that I could potentially be likely respond to (mTOR/PI3K inhibitors) have some pretty nasty side effects, including basically making you a diabetic.   And, clinical practice guidelines (which of course I have looked up) dictate that after 2 different hormone therapies have failed (aka you've had progression on them) you move on the chemotherapies (essentially drugs that are less discriminatory on the cells that they kill and/or target general cell growth vs targeted aspects of the cancer cell and what feeds it).  So we moved my meds to Xeloda/capacetibine an oral chemo med.  

So, I started taking this med (weekly on, week off, main side effect to worry about it diarrhea and happy to report with TMI I haven't suffered that and haven't had to move to a BRAT diet, which would probably make me a brat...). 

The lung biopsy on July 20 went well enough.  Actually seeing the CT images of my lungs with all those nodules (yes, I also fall asleep to radiology lectures on how to read CTs, and the process of a lung biopsy is basically, stick the needle in, take a picture/CT to make sure you're on the right track, push it further, take another picture....so there were lots of pictures to look at) kind of made it all feel a bit more 'real' (remember I'm still basically asymptomatic!).  

 

Masked up in the hospital for my lung biopsy in July.

And the fancy genetic testing that reported in August, didn't really change much...tumor is still ER+, HER2- and there weren't many "clinically actionable" other markers (at least that we hadn't already gone after...AKA the CDK4-6).   If anything in the plethora of results there is some suggestion that yeah, it's a nasty tumor with cells that likes to survive.

So I kept taking my Xeloda, (side benefit it decreased my monthly shots to 3 sticks vs 5 since I got to drop the Faslodex), and going in and September had a bit of positivity with a down tick in my CA27-29 marker...

 

'Bend that curve!" 

But, in my ever-realistic way, would wait for imaging before I got too excited.  Bringing us back to Friday, the morning CT before the shit-ass day.  I of course checked my online chart all day long, feeling like it wasn't going to be good news.  Not totally just scanxiety, but have had some pains that may be symptoms??? So hard to know what is real, what's just being human, and what's all in my head.  

Saturday got a notification of a "New Test Result".

 

I want the details! 

Man, I really wish the full report would show up.  How much of an increase?  How much worse is worsening? Yeah, yeah, stable sternum bullshit, whatever. The lung mets are more concerning anyways.

And that's where I'm at, and what I know.  Right now at least.

So what's next?

  • The full report will post, I'll play internet doctor and read it.
  • I'll talk to my oncologist, either at my Nov 4 appointment or sooner.
  • I'll probably ask to consult with the breast specialist at IU I saw last time around (my onc already has since my recurrence).  I may ask about going up to Ohio State and The James, particularly since there are some clinical trials there (in phase 1 and 2) I think I may qualify for.
  • We'll likely change the treatment approach...BECAUSE THAT'S WHAT FUCKING METASTATIC DISEASE IS.  Try it, hope it works, when it doesn't, move on.
  • I think the next step may be infusion-based chemo.  In which case, given the current timing, I may have to make some decisions.  I've decided to spend Thanksgiving-January not in Dayton (thanks to my former student for house/cat sitting and remote classes to enable this).  I'm excited to see my family, be places where the sun shines more often (CA, CO, AZ) and focus on myself and health for a bit (thanks to Lex for convincing me to sign up to run a half marathon in January in AZ...).  If I have to move to infusions, I may wait till the new year if it doesn't seem like it'll be detrimental.
  • I will probably have to actually face some realities at some point sooner rather than later about the balance of treatment benefit vs costs.  Costs of side effects on quality of life, costs of time, and for the benefit of months.  It's a shit place to be.

I need more info.  It'll come, but I'm not a patient person.  Case in point, I recently binged Game of Thrones (upon the suggestion of some of the same folks keeping me sane at work).  I had to wait a few days because we planned to watch an episode together...it was painful to wait! And then I finished the rest of the show (3 more eps) that night.  Glad I have increased by pop culture understanding.

So I'm waiting.  And continue to take the Xeloda (singing 'Poison' in my head each time I do).

Maybe I should start dancing while taking my meds too.
 
I'll update after I find out more.  Because people are awesome, I'm sure there are many asking 'what can I do'?  Again, vote for people who care about science and protecting pre-existing conditions (because you know, without my healthcare, which is actually only up to about 100K this year, I'd be screwed), and in general aren't trash human beings.  
 
Also, you can support organizations like Metavivor that are fighting for "more for stage iv", given that research on metastatic breast cancer is funded much less than earlier-stage disease.  For more info on that, check out this video that I sent in a photo for.

For me personally, there isn't much to do right now.  I'm still feeling like a regular person, still capable of doing all of the things of adulting that need to be done.  In fact, I have had quite a bit of fun in the past few months too while apparently the cells that are going to kill me have been just as stubborn as I am and continued to grow.  I'll end it with some photos of the good times (I CAN manage a little optimism at times), hoping for more good times ahead.  

 
Erica and I put a deposit on a June trip to Africa to gorilla trek and safari (Yes to Adventures!).  Our tour operator sends updates on Whatsapp, like new gorilla babies and it definitely helps! 
 
 
Celebrated my 35th (I wrote this as 30th till I was corrected...WTF)  birthday in Shawnee State Park backpacking for 2 nights, ~22 miles with Diana.  I cursed (literally) my lung nodules climbing beautiful rolling hills.
 
I bought a couple kayaks and spent many days in the summer and fall enjoying the water, including locally on Great Miami River, at the same place my rowing team practices.   
 
I finally got a haircut!  COVID sucks, wear your god damn mask people. 
 
My custom metastatic ribbon colored bracelets finally arrived.  If you want one, let me know.

Riley and I continue to be friends.  I appreciate her increased proclivity for snuggles. 
 
We got this sweet new virtual anatomy table that I've used for outreach and done interviews (on days I didn't brush my hair) for. 

Speaking of interviews, if you want to listen to me talk about cancer, food, running, and using pause words like 'so' 'like' and 'you know' more than I'd like to admit, check out this interview my friend Elizabeth did of me.

And to really finish things off, my mom sent a link to this to me the other day, and I think it really sums my feelings pretty damn well.