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.
