I was waiting to update...

 ...until the end of the semester.

....until there was something to say.

....until the next scan.

Metastatic cancer is so much waiting.  Waiting in doctor’s offices.  Waiting for results.  Waiting to see if ‘it’s working!’ or if it’s “so...what’s next?”.  There’s a big difference between that exclamation and that question.  And the only thing there is maybe more of than the waiting, is the questions. So. Many. Questions.  The simple ones like “are you currently in pain?” and the hard ones like “how are you feeling?”.  Questions others ask me, and the questions I ask myself.  “What will I be able to do in 6 months?” “Will I be alive in 6 years?”  I do my research, it’s what I’m trained to do.  I look up the statistics, I interpret results cautiously.  I take into account the anecdotes, but lean into the percentages.  

I said to my therapist yesterday, we are all the protagonist of our own story.  We all want to feel special.  We want to be the exception.  And, to some extent, I have been.  I have an advanced degree, going on percentages, that’s ‘special’.  I’ve received honors that only a small percentage have shared.  There’s probably other characteristics that put me in a minority or that show that sometimes the exception really is the rule.  But, other times, we’re just one of the majority, one of the many, and we can’t rely on storybook plots.

That’s a long preamble and perhaps more deep and/or depressing than needed.  Here’s the long and the short of it:

My most recent scans showed that the benefits of the first 3 months of my infusion chemo (decrease in size and number, per the February CT) have disappeared.  The lung nodules have increased in size (doubling) and number over the last 3 months of the same therapy.  There’s a few minorly suspicious other lymph nodes, yet still no signs of liver involvement and/or progress of the sternal bone metastasis.

So what’s next?  Well, we grab for another straw.  Try a different class (science speak for the way in which a drug works) of chemotherapy (Halavan, more deets later).  It should be similarly tolerated, it’s a 21 day cycle with 2 weeks on and 1 week off.  We’ll rescan in 2-3 months and see if it’s working.  If not, there’s basically one more class of drugs to try before clinical trials (if any exist and I qualify for) become the only real option.  4th line treatment, here I come, just a bit over a year past diagnosis.

The scan was Tuesday.  I saw my doctor yesterday morning.  But it’s been 2 months since my last post.  I really was hoping to be able to say “great results! We’re going down to 2 weeks on, 2 weeks off”.  Last doctor’s appointment, in anticipation of this latest scan, my oncologist and I even talked about remission...I had such a positive response to the first 3 months on Abraxane (side note, I always have to be careful in wording things...my default is to say there was progress...but that means the cancer didn’t progress....it can get confusing, probably why I often default to the more clinical ‘there was a shrinking in size and number’).  Alas, that isn’t the case.  The update is with less than ideal news.  

So that dreaded question of how am I feeling?

Physically, I feel basically the same.  I’m still pretty out of shape, mostly, at least I think, due to the excess weight I’m caring.  I have an occasional soreness in my sternum, or tinge of pain in my arm, a zinger of numbness to my foot or hands.  But overall, well.

Mentally, I feel sad, disappointed (this is why I don’t let myself get hopeful people!), angry, frustrated.  I can sprint through those stages of grief faster than I run in real life, that’s for sure.  It’s that waiting, and those questions.  I had started to make plans further out to the future.  I had pushed back the Africa trip due to COVID, but didn’t question that next summer I’d be able to go (and yes, I still may, but it’s not certain and perhaps even not probable).  I was making plans for my sabbatical.  Plans that even meant spending time on other future pursuits, like writing grants.  And this week I was reminded of the uncertainty of it all, the fragility.  

And yet, despite the shake up of this week, there’s been so much good in the past 2 months.  Among the regular frustrations, there were a lot of really cool things to highlight.  

-The end of Women’s History Month and the Women of UD celebration was really cool.  Yes I did walk to see my face on a building and pose like a dork in front of it.

-My awesome students busted out a TON of research, n=16! In a matter of weeks.

-I spent Easter weekend camping nearby with my dear colleague Diana, one of her adorable children, and then a great family lunch and egg hunt.

-I taught, did recruitment events, did a ton of advising and the normal academic nonsense.

-I participated in our campus Relay for Life.  Many of you were probably some of the SUPER generous donors that helped me/us raise a ton of funds!  I definitely could have posted about this event itself.  Supportive colleagues, steadfast friends by my side.  Getting to connect with the family of the colleague who passed from cancer at the end of last year.  Seeing students come together to support a cause.  It was truly a great night.

  

 

-End of the semester celebrations with my lab crew.  These kids have been a bit of normalcy and a huge support this year (and having Mimi the 4Paws dog as part of the lab never hurts the vibe...)

-Just this week, the day I got scan results reported, a distractingly good time at the Reds game.

-Professionally, I authored a few things related to my diagnosis and how I incorporate it into my teaching.  One, a small professional association blog.  The other, a much bigger deal, an essay in Science magazine.  It just went live yesterday and I’m amazed that I’ve already gotten multiple people from across the globe, that I’ve never met, reaching out with well wishes.  People can suck, don’t get me wrong, but they can also be pretty amazing sometimes.

So what’s next?  A new treatment, yes. But come on, you guys should know me well enough by now to know that’s not all.  I can’t let it be. That’s my fight, my battle (although as I’ve said before and is fairly well established in the literature, that war analogies are terrible as they relate to cancer, and COVID too).  Along with the new treatment, I’ll continue to play tennis, to row on the crew team (novice this year since fitness is low).  Tomorrow, I’ll celebrate my 1 year anniversary with Riley cat.  I’ll volunteer at our in person graduation (woo hoo UD for managing COVID!) on Sunday.  Next week is end of year meetings and then a summer of research, tennis, self-care. Starting to connect with folks now that most are vaccinated (GET YOUR VACCINE PEOPLE.  I CAN’T HELP HAVING CANCER THAT MAY KILL ME BUT YOU CAN PREVENT YOURSELF AND OTHERS FROM POTENTIALLY DYING FROM COVID.  FULL STOP.)  Planning for a few adventures with family and friends, and looking ahead to a year long sabbatical that allows a bit more flexibility as well.  

That’s what’s next.  Trying to not wait.  To Mariekondo life as much as possible, doing the things that spark joy. For the rest?  Thanking it for the joy and/or service it’s provided and moving on. 

Here’s a morning selfie while I write, to show the salt and peppery regrowth (more salt than pepper admittedly).  Despite the waiting, despite the questions, I’ve got to keep smiling!