Summertime and Coughing, a lot of Coughing, but fun Preparations!

Hey ya'll.  It's been about a month and a half since I last posted, and reported that there was progression in my lung mets.  Since we are running out of "arrows in the quiver" as my doc said, and I've had a terrible, persistent, non-productive cough (more on that later), he wanted to do a bronchoscopy (scope down the windpipe and into the lungs) to see if there was potentially any cancer actually in the lung tubes, and to biopsy or take a sample so that we can figure out if there's been any change in the receptor expression of the tumor cells (estrogen positive, progesterone negative, HER2 negative...same as my initial primary tumor, confirmed with lung biopsy in 2020).  If the cancer changed to being all negative (triple negative), it would open up some additional treatment options (versus the 2-3 chemos currently left for my kind).

So this cough...

Coughs, doesn't seem like a HUGE thing, but really, it can really screw with your day to day life.  Basically, I have a deep cough that comes in triplets maybe every hour or two.  And then, usually like 3 times a day I'll have a major coughing fit where I'm keeled over, hacking almost uncontrollably.  It's not fun.  Especially when it makes me puke, which is not uncommon...  My oncologist had given me some meds to try to help control awhile back, nothing helped (that'll be a theme).  

At the pulmonologist, I did some lung functioning tests (maximal breath in, out, quickly, etc.).  I scored about a 60%.  Even if I wasn't an overachiever, I don't think I'd be too pleased with that.  The doc was nice enough and suggested treating me like I have asthma, COPD, pretty much anything.  So I went on high dose steroids, inhalers of all sorts, proton-pump inhibitors for acid reflux, pretty much the kitchen sink.

In the meantime, I took a quick trip to DC to visit my friend Kevin.  It was great.  Except for the heat and getting stuck at National.  But otherwise, great.  Indoor mini-golf, touristy Mall things, show at Kennedy center, church organ music, good stuff.  Oh, and I did some end of life planning...morbid perhaps, but I like to be prepared.  So Kevin helped and served as witness (and his buddy), and made copies and such.  The people who need to know things know them now, so that's good.

 

Supreme Court...would be more inspiring if they weren't about to strip more that half the country of a fundamental right to choice and healthcare. Ok, soapbox moment over, but seriously, WTF.

Me and Kev.

After coming back, it was time for the bronchoscopy.  It was a robot assisted one, which is pretty cool.  Basically the doc using a video game controller to follow turn by turn directions to the nodule a CT identified and located.  I handled the anesthesia well (even didn't go to my afternoon meetings! 😉), no real pain or anything after, he didn't see any endobronchial lesions and so we would wait on the biopsy.  

Oh, and I did an at home sleep test and have sleep apnea (not really surprised given the weight I've put on), so will get a CPAP machine to force air while sleeping, but there's a nationwide shortage so haven't gotten it yet (perfect storm of supply chain issues (same chips as cars), respiratory part use from COVID, and a major recall). 

Pretty usual work week, got to watch my niece graduate (thanks technology!) in California, and had soem Friday Fun with the lab kiddos.

We hosted our collaborators from our Navy grant for an in-person meeting, which was great to see folks not on zoom boxes (well actually Teams, which is even worse than zoom).  We got a better tour of the fun research tools at NAMRUD like "the Kraken", my student did great presenting, and we survived as women being outnumbered by men like 3:1.

 This past weekend was Reunion Weekend at UD.  My college roomie Lynn came in for it, met up with another one of our roommates, was a nice blast from the past.  I "hosted" a brunch for donors with my student, talking about how we've benefited from gifts of all sizes, and did a demo of some of our donor-funded equipment.  It was a pretty good time!

This week I met with my oncologist to review results of bronch, make a plan, etc.  He also prescribed a drug to sort of turn down the cough reflex to see if that helps any (too soon to tell).  The biopsy showed that nothing has changed with the mets, so we will go to an infusion based chemotherapy, Ixempra (ixebepilone).  Hair loss, possible nausea, fatigue, all the fun chemo side effects.  I've been so fortunate that I've handled chemo well, so fingers crossed this will be similar.  I don't start until July 13th because....

 I'M GOING TO AFRICA!

This was a bucket list trip I planned with my adventure buddy Erica soon after my diagnosis of stage 4.  Originally set for summer 21, postponed by COVID.  We leave tomorrow! Safari in East Africa...should be amazing.  I'm a little concerned how I'll tolerate the long flights (airplanes are the equivalent of about 8000 feet, people forget that) and some activity at moderate altitude (hiking at 4000-6000 ft) so I got a portable oxygen concentrator to hopefully help me breathe a little easier and stay a bit more oxygenated towards normal levels (99-100%, I'm like 93-95% usually).    I'm packed and ready, including way too many drugs and a bit too heavy of luggage for our bush flights, but they can drive some luggage too.

So next update expect LOTS of animal pictures (or a link to whatever photo album I decide on).  I'm going pretty tech free...no laptop/ipad/smart watch.  Plan to only look at my camera phone screen!  Will be great to be disconnected for a bit.

Related to this trip, I have recently been giving the gift of A LOT of REALLY generous folks showing me their love and support (thanks Erica!)...people I haven't talked to in awhile, good friends, colleagues, friends and family of friends, former students.  It's incredibly overwhelming and uncomfortable for me....I'm trying my best to accept the love and so grateful that I'm able to receive it now, while here, and able to enjoy it, versus later on down this declining road.  This thing I've got sucks, especially now that I have symptoms, but ya'll are amazing and make it better.  

Kwaheri...Swahili for goodbye and be blessed!