Anne's Africa Adventure!!!!!

 

Guest blog from Anne’s friend and adventure buddy, Erica Wehrwein!  It is an honor to give a voice to Anne’s Africa Adventure…the good, the bad, and the cough. I am honored and grateful to be invited to go on this adventure and to help Anne experience this dream trip of a lifetime.

After Anne was diagnosed with lung metastasis, we talked about what she most wanted to see and do.  She bought a series of travel guidebooks for places around the world and studied the options.  The final decision was to trek with gorillas in Africa and go on safari! Wow what a plan! TREK WITH GORILLAS!!!  Think Gorillas in The Mist/Dian Fossey.  We even watched that movie just before flying overseas.  We also watched Out of Africa because we went to Karen Blixen’s estate, which is now a museum.   

We initially planned the journey after her diagnosis in 2020 with a plan to go June 2021 but COVID thwarted this plan.  Fortunately, despite lung mets that are relentless and keep growing, we were able to go in June 2022.  I am SO glad that we were able to make it happen.  To be honest, I cried when we cancelled in 2021 with the uncertainly of progression of cancer leading me to wonder if a 2022 trip would happen.  WE DID IT! 

Africa was truly the trip of a lifetime in more ways than one. I am so proud of my adventure buddy extraordinaire for her resilience and perseverance to pack her oxygen concentrator, cancer meds, and a backpack to just do it! Take that, metastatic cancer!  

The good…

We had a fully custom and private tour arranged by Bernard at Nziza Hospitality.  We planned the exact itinerary that we wanted across 3 countries (Kenya, Uganda, Rwanda) and just the two of us went with a guide for a personalized trip. There was a new guide in each location, and all were outstanding.  Our Ugandan guide Martin was a walking encyclopedia!  We learned so much!  So many people donated generously to a life celebration Go Fund Me!! Wow wow wow.  Thank you so much to all who participated in that.  With those funds, we did every possible add-on to the trip. Hot air balloon safari ride, business class seats on the flight home, permits to shadow scientists/naturalists in the field doing their work (a half a day each for the elephant, lion, chimp, and gorilla research teams…we are nerds, as you know, and asked a million questions and took notes!), massage, post-game drive drinks, personalized visit to the local tribal village, and so much more.  Anne did it all!  The generosity from friends, family, colleagues, friends of friends, strangers was so moving.  The animals all came out for us as if on cue during the game drive.  Cue to rhino!  Cue the baby elephants!  Cue the cheetahs eating an impala!  We saw everything one would want to see and saw it up close and personal (we have a video collection of “this is not zoomed in” whispered as animals walked close to our vehicle!). Err maybe sometimes even feeling that it was a bit too close haha!!  Um should we really be this close a bloat of hippos (that is what it is called LOL! You can also call it a crash of hippos).  The guide said many times how lucky we were!  We had private charter flights between location, personal escorts to guide us through the airports, porters for luggage…living a charmed life for sure!  Also, they grow and drink a lot of tea in this region and each country told us they had the best tea.  I did a formal taste test and I vote Kenyan tea (sorry Uganda!). 

 

The bad…

Cancer sucks.  With extensive lung mets, there is a major challenge to feel good on long flights with low pressure and low oxygen levels driving down energy levels.  In addition, we were at altitude much of the trip.  Nairobi is a sister city to Denver, for example, at 5000ft. The less oxygen, the harder it is to have any exertion, even just walking around, and the more the cough becomes an issue.  The pulse oximeter measurement was checked regularly, and I saw as low of 82% when it should be close to 100%.  That leads to shortness of breath and physical effort is really hard.  I am amazed how much Anne pushed though this.  She was glad to have a device called a portable oxygen concentrator that pulls in air and concentrates the oxygen for her to breath.  This is like having an oxygen tank but safer for flying and much less weight to carry.  The device was purchased with GoFundMe donations!  Thanks donors! 

 

The cough…

Cancer cough is BRUTAL.  Soul rattling.  Persistent.  Aggressive. It sometimes happens with enough ferocity to induce vomiting.  So much compassion to Anne for living with that cancer cough day to day. So much empathy for the challenges with exertion that causes even more coughing.  So much admiration for Anne pushing through all this.  People in Africa were SO caring and supportive about the cough.  So many people offered an “I’m sorry” or “that must be so hard for you” or “can I offer you a lozenge or drink”.  While there, unlike here, we had no nasty side eye or complaining about her cough nor need to explain that it is not COVID.  People truly showed caring and desire to help.  She got many well wishes, blessings, prayers in various ways.  The guides on the trail were so kind to offer a hand, support taking a break, and were very patient.  I was so moved by these interactions. 

The biggest accomplishment for sure was hiking up a STEEP and LONG several miles up a TOUGH mountain trail to see gorillas.  Even without cancer, low oxygen, altitude, severe coughing, and limited exercise capacity, this was objectively a HARD hike.  The most consistently steep and straight up climbing I can recall doing.  This was epic.  Anne was determined.  We had a team of porters and guides to help.  Oxygen was on high the whole time.  For hours, we did one step at a time.  Took breaks.  Had moments of doubt if this was too hard to achieve.  But WE DID IT.  Anne did it.  The team of scientists and porters were incredible.  They all but carried her up the hill to make sure it happened.  I am so inspired by her and by them.  The primary trip mission was to see the mountain gorillas and we did it.  I cried when we made it to the top after several hours of hiking.  Somehow all the well wishes that people sent to Anne were channeled to this day.  The cough was the least intense on gorilla day than it was any day of the trip despite being the biggest exertion.  How is that possible!?  It was meant to be, I guess.  The best I could do was offer some pep talks, assure Anne that the climb was REALLY hard, and go step by step with Anne as she slogged up the mountain.  It was STEEP, people.  I can’t say that enough.  At the top there was true trailblazing and bushwhacking to clear a path to the gorilla family.  They are wild but “habituated”, meaning that they see the researchers daily and won’t bother humans because they are used to us.  BUT…they are very much wild animals.  This is not the zoo!  We got to see them up close.  They are beautiful!!!  The gorilla babies were adorable.  The large silverback was thankfully way up a tree just looking over the family!  I didn’t want to be any closer that that.  

 

It is impossible to briefly explain what this trip meant to both of us or to succinctly summarize a two week journey. Therefore, I will let the pictures speak a thousand words. Check out the 8.5 min video montage here:

https://m.youtube.com/watch?v=cD3g5j813VU&feature=youtu.be

 

My heart is filled with gratitude for our amazing tour guides/hosts, the hospitality of the people, the abundance to allow us such a journey, the support from friends and family, our safe travels, and for the opportunity to make these special memories together!

 

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!

3 Months at a Time

 Hi all, it’s been a bit.

About 3 months actually.  The timeframe in which I sort of live my life these days.  Last time I checked in, I was pretty stoked that the oral hormonal meds I was taking caused regression in my lung tumors, and my doc and I had celebrated with a very happy hug.

Spoiler alert…my last visit was less happy, my last scan showed progression, and I continue the slow march down The who-knows-how-long road of metastatic breast cancer.  

Scans like these mean in some ways that everything has changed and in other ways that everything stays the same.  It’s the exhausting part.  The anxiety leading up, the waiting for the MyChart notification, the research before meeting with the doc, reviewing the visit notes to make sure I didn’t miss anything, telling family and friends.  And yet, I’m still here, giving those reports, and that IS what really matters.  

Medical rundown first, and then an update on what have actually been a pretty freaking amazing 3 months.

There’s progression in the lung nodules/tumors.  Meaning, that it’s time to move on to something new in terms of treatment.  However, of primary concern right now is this terrible persistent cough I have.  It’s an intense cough, it makes me puke, I’m sort of surprised I haven’t cracked a rib yet.  Even if it wasn’t COVID times, it draws attention, and it sometimes makes sleeping hard.  We have previously tried some meds to calm the coughing reflex that didn’t really work.  So now, I’ve been referred to a pulmonologist.  I’ll likely have a bronchoscope (camera down the throat) to see if there are any lesions/cancer cells inside the bronchi (tubes of the lungs) that may not be fully visible on CT scan.  If there are, they’ll biopsy so we can retest the cells to see if the cancer has mutated/changed from it’s estrogen positive status, to no longer having those receptors.  Typically, hoping for “triple negative” (no estrogen, no progesterone, no HER2 markers of the tumor) isn’t what you want (it’s the breast cancer with highest mortality) but in this case, it would open additional treatment options besides just IV chemotherapy.  

If there isn’t anything to sample during the scope, I’ll likely do another lung biopsy to try and determine the same thing.  Pending these results, we’ll switch therapies to either an immunotherapy (if triple negative) or an IV chemotherapy (if has stayed the same).

The quiver is running a little low on arrows, but there are still a few there.

The news was disappointing, though maybe not all that surprising, given the progression of my cough over the past few months.  It’s hard to have to wait to initiate a new plan, but gathering additional data first fits with my scientist ways.  

The good thing about a delay in changing tactics is that it won’t interfere with some upcoming planned travel…to AFRICA! Yes, the safari is happening.  Plane tickets are booked.  International wire transfers (a headache and a half) have paid for it, we’re doing this thing.  I’m excited.  Prepare yourselves for an onslaught of travel photos from the trip with adventure buddy Erica, coming to you at the beginning of July.

Over the past few months I’ve done a decent amount of travel as well, taking advantage of the flexibility of sabbatical for some extended trips.  Phoenix with grad school friends, hanging with Mom and Tucci, then up to California to see Bechtel crew for birthdays, badminton, and more and the Idaho fam at the beginning of their spring break vacay.  Minnesota for high school friends, then out to Colorado to see pretty much someone from all stages of life…sister and fam, grad school friends, a high school buddy, and a UD friend.  It’s always been really important to me to put in the work to maintain these relationships, and it’s only more important now.  

Work stayed busy with students finishing theses and an outstanding trip to Philadelphia for a conference, the first in person one for a couple of years.  Meeting up with a former student, hanging with current students, and seeing colleagues “not in a box!” Was really uplifting.  I should take some credit, I know (my therapist and I are working on this, trust me!) for the relationships I’ve built and made and sustained, but there’s still some luck involved, privilege of being in the right place at the right time with the right people, and for that, I am super grateful.  

So rather than a well-laid out chronological trip through the last few months, I’ll just photo dump with some captions, to try to bring the tone of this to a happier place than it started.  

Thanks for the love and support and prayers and good thoughts.  Just got to keep on keepin’ on.

(Post hoc edit…it never fails, I love that when I go through pics to add to these posts, there’s always something that I’m like “oh yeah! That cool thing happened too!”  Gratitude friends, may be the most powerful drug of all.  

February-May photo/good times review…NOT in order and I’m too lazy to change :)

Lots of graduation celebrations!  Congrats seniors!

Oh hey Idaho Crecelii…thanks for coming down to Cali!

Thanks for bringing us lunch, Nat!

Pretty cool when you get to give your former prof an award.  Carissa is awesome.

Just hanging out…Jay has skills.

Demolition is a pretty great way to get out some frustration.  Side note, don’t wear rubber sandals.

Erica won a major award!  Congrats friend!

Oh Mikey…how I love that in an hour at 8 in the morning we can go from your legal savant skills, to afterlife and all topics in between.  I love this friendship.

Lab/UD alum (and now official doc!) showed these current lab/UD students how to have fun in Philly!

Not a bad crew for a semi-impromptu high school reunion at the local brewery (that used to be the Perkins we hung at)

Benefits of zoom meetings…yes, I will take that meeting in Phoenix.

Ok, so this could be a whole post, but yeah, Erica “Reece” is awesome…look up Reese’s University for a good laugh.

I also won a major award!  Great to be back at CSU to accept it, so fun to have Erica along, see the old lab crew, be joined by other colleagues.  The Fort will always hold a special place in my heart and Frank and Jen…you guys are the best.

Students win awards too!  Congrats Abby!

Oh hey munchkin.  Fun to share breakfast with you, even if it was a quick trip!

Thanks for driving up for post-award celebrations friends!  Getting to see you multiple times in a month was quite the treat!

I don’t care if I ruin the flow of the line by taking selfies with students at graduation.  Marshalls be damned!

Girls weekend in Phoenix!  Cat and LJG are awesome.  And they even put up with Tucci! :)

When you remember that your hs senior year prom date now works at your graduate alma mater, you have lunch!  And meet his wife (who happens to work in a similar area!).

 

A Rollercoaster Ride to a Happy Hug

Yes, a happy hug.

I got a happy hug from my oncologist.  A hug of relief.  Of shared joy.  Of gratitude.  

After two years of dealing with this shitty metastatic diagnosis, and only one prior “good news” appointment, I got another.  

The hormonal therapy plus specific mTOR ‘kicker’ (targeted intracellular pathway) led to a decrease in the size of my lung nodules.  Woo freaking hoo.  

But, as with anything and this cancer “journey”, it wasn’t just as simple as good news.  A look back on the crazy couple of weeks leading up to that happy hug.

Sunday Feb 6 - Reminders of the Impact

One of my lab students shares that she has included me in her personal statement for med school (if I’m ok with that).  I go between crying and smiling in bed reading the amazing words she’s written that remind me of the good impact I can have on others.  I tell her that I’ll provide critical feedback when I’m a bit less emotional.

Monday Feb 7 - Oncologist Appointment

This was a regular appointment, to get my monthly shot and check in on labs.  I hadn’t seen my one since we started the new drug in November.  I assumed we’d plan when we would scan (likely end of February, giving me 3 full months on the drug).

I arrive, get my labs, and all is pretty normal.  Catching up, talking about COVID and how that went, Flyer basketball, the usual.  

Later that day, my comprehensive metabolic panel (CMP) resulted on MyChart (my complete blood count (CBC) reported quickly while in office).  

Fuck.

Yes, you’re reading that right…AST 272 (normal high is 55).  ALT 580 (normal is 60).  That’s pretty damn high.  Cue the internet sleuthing and searching.  And, trying to calm the nerves of “those are liver enzymes.  Liver.  Liver Mets.  Damnit, it’s in my liver now”.

A little later and the tumor marker we measure (what initially prompted scans that found mets) reports back.  402 when over 30 is normal.  Last measure was 263 in December.  Fuck again.

Let’s just say that it was probably a good thing I had a virtual happy hour that night after work with colleagues that softened the blow of those reports.  Thank you alcohol (and yes, I see the irony of drinking while also worrying about my liver…).  

Send my doc a message on MyChart…heyyyyy so, should we move those scans up from end of Oct??

Tuesday, Feb 8 - A somber Patient X

Debriefing all the possibilities with mom on the phone on the way to work.  See flashing lights behind me….oh shit, what did I do?

Well, apparently it’s what I didn’t do….as in the midst of moving in September I somehow didn’t renew my license plates and have been driving on expired plates for 5 mo. Cool.  Yes, officer, I understand you have to give me a citation.  

Cool.  

While trying to not think all day about the cancer and the possible expansion of Mets, I had a very ironically timed appointment to guest lecture in the physiology class and give my “Patient X” lecture.  It wasn’t super upbeat, not going to lie.  

One of things I struggle with in all of this is that we (as a medical community, patients, providers, etc) still don’t really know what the BEST course is, despite all the work and research, etc.  Case in point, check out this graph from a paper I was looking at:

All those individual lines?  Those are individual patients.  And all those different colors?  Those are different drugs.  And yes, this is a survival curve and the x axis is in years and yes those are mostly single digits.  But the point is, there really isn’t one “right way”.  They call it “practicing” medicine for a reason. ESPECIALLY with Stage 4 where there are less trials done and less that include folks with lots of different treatments.  

So I solemnly told the students to not forgot when they get out there about those individual lines, those individual patients.  I’m one of those lines.

More research.   Maybe it’s “just” fatty liver?  Maybe it’s the drug causing liver toxicity (it happens, even if only in a small percent of people to the extent I’m showing).  Come on Romer, write me back!  Lots of texts to my few treasured folks I can share academic papers with along with my anxieties.  

Wednesday, February 9th - Award Day

Ok, call and message from Romer.  He saw the values, will move the CT scan up to this Friday to see what’s going on.  Stop taking the everolimus (the mTOR inhibitor) that might be causing the off numbers (both in liver and tumor markers).  

Somewhat regular workday, with the background of “what if I’m dead a lot sooner than I thought” playing on repeat in my head.  

Check email….wait, what?! I got it!!  The Alumni Award from Colorado State that my fellow lady badass scientist and friend Erica had nominated me for.  YAY!  That’ll bring the emotions to a more positive place!  They have a ceremony? Ok, I can make that travel work.  Cool.  Temporary reprieve from only thinking about this stupid fucking disease.

Move up my follow up appointment so it’s quickly after Friday’s scan.  Wednesday after is first available. Fine.

Thursday, February 10th - Interview Day

I applied for a job at UD…an Associate Provost job. So, administration, over a pretty diverse portfolio.  It’s kind of a “big girl” job which meant a “big girl” interview day.  Almost all on Zoom.  Yayyyyyy.

Search Committee for an hour.  Public Session open to the university (yes, anyone can come and ask anything…at one point I think like 100 on the call, hard to pay attention).  Hour long with 15 min presentation at the top.  Catch my breath a little and eat some lunch.  Then the real fun begins!  45 min zoom and 15 min breaks….President’s Council, Provost Staff, Chairs and Associate Deans, AALI (the unit the position oversees) Directors.  After those 4, hustle up the hill for the 1-1 with the Provost.  

Exhausting.

But I think it went well.  Not sure what outcome will be yet (should know soon), but it was a good experience either way.  A lot of self-reflection, having to put myself out there, all good things.  And to be a finalist is an accomplishment in itself.

Friday, February 11th - Scan Day

After an exhausting interview, don’t we all want to go lie on a scanner and find out if our health outlook has majorly changed?!  Well, sometimes we don’t get a choice.

7:30 AM Scan.  Got to drink contrast and IV, since doing both Chest and Abdomen.  Hadn’t done an abdomen since initial diagnosis March 2020 but this will allow best visualization of the liver.  

Busy day of a faculty candidate for position in the department on campus, research, etc.  At some point, the scan results.  

FUCK.  I mean, cool, the liver is clean, but continued progression?!?!  And doubling?!?  God, damnit.  Send some update texts to a few folks.  Wallow a bit.  

Wait.  Wait a second.  That 9x9 size looks kinda familiar, and wasn’t it 2.7 the last time?  What radiologist read this?  Was it the same nodule location as last time?  WAIT.  WHAT THE ACTUAL FUCK.  Look at that comparison date.  March 2020?!?  That was my first scan.  What the hell?  Did this guy (and no assumed gender, it was a dude, I stalked him on the Premier network, he’s not my friend right now) ACTUALLY compare this to my first scan 2 years ago?! Rather than any of the SIX since?!  Especially the most recent?  Check all other scans….yes, they were appropriately compared.  This is weird.  Maybe because the last abdomen scan was 3/20?  Still, so, many, chest CTs since then….

Send a note to Romer.  It’s Friday, assume that I won’t hear from him. Resend text messages to rage about this goddamned fucking radiologist (sorry Freddie, but you did take the brunt of my anger) and how maybe things aren’t so bad.  In fact…if it’s the same representative nodule, it could actually be better? Can I compare reports like that? Ugh, maybe I shouldn’t be this invested.  But it’s my life!

Saturday and Sunday, 12/13 - Distractions?

Thankfully had a fairly busy weekend.  Some data collection, watching a Flyer victory, Super Bowl.  I try to resist too much thinking, worrying, but it’s fairly unavoidable.  Reflecting on the up and downs of the week, no wonder I’m a little tired.

Monday and Tuesday 14/15 - Distractions at Work?

Pretty normal and slightly busy days.  I plan that trip to Colorado for the award.  Yes I will stay an extra day, (reminders of a terminal disease and my ABC’s help with that).  Valentine’s Day.  Avoid any wallowing as I’ve got bigger things on my mind.  Still no word from the Doc…maybe it’ll just report?  Maybe he’ll just discuss at the appointment?  I.  HATE.  WAITING.  

Wednesday, Feb 16th - The Follow Up

Journal Club with the lab at 8 then over to the doc after.  

As I sit in the hallway after checkin, waiting for them to call me for labs, the doc walks past…

HIM: “oh why don’t  you just come on back”

ME: “Ok”

HIM: “You’re here to talk about your scans, right”

ME: “Yes, and why did they compare to March…I can’t…”

HIM: (interrupting) “I know, I know.  I’m getting a radiologist on the phone to ‘chastise’ them”

ME: “This is probably what I get for always being so on top my results in MyChart, huh???”

I get settled in exam room.  He comes in, on his cell phone, changes it to speaker phone and sits across from me.

HIM: “Yeah, ok, so Anne Crecelius, CT chest, abdomen, compared to March…”

RADIOLOGIST on other line (who I’m pretty sure is my favorite from names on reports…yes, I’m invested in this, haha): “Ok, yeah, yes, I see, oh.  Ok, so this isn’t an excuse, there’s really no excuse, but I think the comparison was because that’s the other abdomen….”

(Me silently high diving myself, a shared eye roll between doc and I)

HIM: “Ok, yeah so can you compare and look…”

RAD: “Yeah, ok, so he had 2.6 x 2.6, I’m seeing more like 2.4 X 2.4….”

(Doc mouthing “BETTER” to me as we both stare at the phone)

RAD: “ok, yeah, October, 2.7, yeah, it’s definitely smaller, and here’s another, yep, ok it too.  So I’ll write up an addendum formally but it’s looking like decreased size”

HIM: “Ok, so clinical improvement….”

RAD: “Yes”

HIM: “Ok, great, thanks”

He stands.  We happy hug.  

It was a whole new experience sitting there, listening live, to the read.  The understandable distance in the radiologists voice (who probably didn’t know I was in the room listening!) as he just did his job…trying to not throw his colleague under the bus, but own up to a mistake.  Seeing my own doc waiting there, just like me, on edge, he’s invested too.  

After the happy hug, we sit back and say “ok, so now we just need to figure out how to do this without my liver getting angry”.  

The metabolic panel will take a bit to result.  We talk dosage differences, it’s not uncommon to have to scale back the dose.  Minor insurance squabbles ensue about name brand vs generics.  Whatever, I’ll pay whatever if it’s working (and am grateful that I can).  

I share the good news with Mom on a call and with others via text.  I’m not nearly as practiced at sharing good news as I am bad.  

I go to work, another candidate, another busy day…hmmm, well, if I don’t get the job at least it won’t be on top of bad cancer news.  

Later in the day, the addendum comes through.  Seeing it in words actually helps.  Seeing my doctor’s notes on the appointment make me laugh.

 

Yes, I was overjoyed.  And yes, it is encouraging.

The metabolic panel comes back later in the day and liver enzymes are almost back in normal range after the pause in the meds.  The dose lowering should work.  We’ll keep an eye on it, but we bought some time.  And the Mets actually got smaller!  I would have been happy with stable, but they showed improvement! Hell yes, fuck you nodules.  

And since…

I escaped to an AirBnB in Kentucky with a colleague to do some writing.  I forgot my laptop charger and had to but a new one (a minor inconvenience that I’m happy I can be pissed about because I am not pissed about worsening cancer results).  I take a monster nap that I think was my body physically catching up to the emotional rollercoaster of the past week and a half.  

It was a fairly productive couple of days.  I’ll start my new lower dose on Monday.  And check liver at the beginning of March when I get my normal monthly hormonal suppression shot.  I still have to remind myself I finally got some good news, it sort of doesn’t seem real.  I’m more hopeful for the next few months, more excited about travel plans, less guilty about applying for the job (that I’ll hopefully hear about this week).  

Grateful for that good news. For a doctor and office that know me and I feel comfortable in.  For the people who were on the rollercoaster ride with me.  And oh so grateful for that happy hug.

Guest Post: My COVID Caretakers

 As I said in my last post, I caught the 'vid up in Idaho over the holidays.  Since I ended up spending the better part of a month with the Idaho Crecelii, I thought a guest post was in order.  Please enjoy, courtesy of M&M.

We said goodbye and happy new year to Anne in December 2019 in Glade Park, CO and didn't get to see her for another whole year. Wait, longer than that -- 20 months? Winter in Glade Park 2019 to Summer in Glade Park in 2021. And in between those Dirty Boot reunions, gratefulness was hard to come by. There was just too much. Anne's cancer diagnosis, a pandemic, isolation, violence, ineptitude, dread. So our absence from family last year made New Year 2022 something we could not wait for. We had these Big Plans -- skiing, botanical gardens, Christmas lights, card games, trivia, and a week in the woods with meals around the same table as our people. Snow for days was in the forecast. And who would have thought that, after 20+ months of pandemic living, one of our best gifts would be a bonus week with Anne after she tested positive for COVID on New Year's Day? Stupid. Fucking. Covid.

Anne liked to tease us that she was our “fourth child” while she isolated in our office/guest room/exercise space. But the truth is, we were lucky to be able to care for her. Lucky to witness first-hand how Anne handled getting (Stupid. Fucking.) Covid with grace and calm and perspective. Lucky to overhear her contributing to her work over Zoom meetings. Lucky to absorb her trivia voice all the way down the hall with the door shut. Lucky that I got to vent and complain about all the things I usually get to vent and complain about over text with Anne, but now in person through a glass door with hand waving and eye rolls. Lucky that I got to do one of my most fulfilling things – disinfecting all the spaces. (Lysol helps me to feel in control and I was this way pre-pandemic. It’s fine.) Lucky that our kids got to see that this pandemic has the potential to bring our family closer and that all experiences have something to teach us, and to give us something to be grateful for.

And we just can’t stop feeling grateful about how it all turned out. Grateful that Anne’s symptoms were limited to congestion and a 12-ish hour fever. Grateful for vaccines and boosters. Grateful that our love language (food, complaining, and dancing) were comforting to her. Grateful that even one more week in hell (where we live) will sit in our memories with fondness and not fear or worry. Love you, Anne. Come back to Idaho soon and we'll do more complaining and dancing and eating but with less disinfecting and nose-swabbing.

Welcome 2022!

Happy New Year everyone.  Though this year feels maybe too eerily like the 20-21 transition?  Or, maybe that’s just because COVID is at the top of my mind this first week.  

I tested positive for COVID this past Sunday (at home, after a negative one, confirmed with PCR that evening).  I’m fine.  Doing well.  In fact, biggest symptom (fever) was clear Saturday night already.  I have limited congestion and assume I had the omicron variant as it has stayed in my nose, rather than my lungs (thankfully). 

The biggest impact it has had has been changing my plans to travel home from Idaho where I spent the holiday.  I’ve continued to stay here, in the “fishbowl” as we call it.  In reality, the office has a great view of the mountains, doors with windows to keep me somewhat still involved in the life of the house, and a really positive workstation, even if it’s a little low to the ground….

Seriously though, I can’t thank my Boise family enough for dealing with this.  They’ve been excellent caretakers and cooks, delivering better food than I eat at home.  The young nieces have been good about wearing their masks when needed and putting on the occasional dance performance to keep me entertained.  And, I’ve gotten to witness the impressive ability of my brother and sister-in-law to both do important work, from home, while taking care of their kiddos (and their extra house guests).  Kudos to everyone who has been in a similar situation throughout all of this, it really is remarkable.  

So, you might ask, how did I get it?  Well, not really sure actually.  The family (minus Mom and Grandma Tucci who stayed in AZ) gathered at a rental cabin a few hours north and one other family also has tested positive (total of 4 of the 13 of us) while others have been negative.  We were all responsible in travel and when in public spaces, but not together.  In the end, the tracing doesn’t really matter much and with as easily as omicron is transmitted, I don’t think we’ll ever really know.  I’m just really thankful that I and the others who tested positive have had mild to no symptoms and are doing quite well.  VACCINES DO THEIR JOB PEOPLE!!!  

While together, the fam and I had tons of holiday fun, both here in Boise prior to the trip to the mountains.    I’ve been dancing with my nieces, playing games, spending time in the snow, baking, etc.  The snow up by McCall was some of the best I’ve ever seen…you could see individual flakes, so much stuck to the trees…it was like a winter wonderland!  I’m grateful that I’m able to still be active (though the downhill day really showed my lack of endurance, although who knows if I was maybe already a little sick??).  We did multi-discipline snow activities (sledding, snowman building, snowshoeing, downhill, and Nordic cross country).  I only cursed my lung nodules occasionally, and even gave myself credit that not everyone with stage 4 cancer would be out doing these things!

The Cancer seemed to play far less of a major role this holiday season than last.  Having hair probably helps.  And, honestly, I wasn’t sure if I’d make it to this holiday.  Especially for New Year’s I was a little down, just with the unknown, but think this past year has pleasantly surprised me in how I’ve maintained my ‘normal life’.  Yes, of course I would have liked to find a drug that worked well, but I’m still here!  Still being too loud (for most), still not being capable of pacing myself in activities, still enjoying the kiddos.  I temper my expectations of course (I apologized to my oldest niece for the morbid thought of saying that my New Year’s resolution is to make it to next New Years…but, like, that’s what it is…), but overall am perhaps more hopeful than I was a year ago.  

My family is instrumental in my ability to deal and keeping my spirits high.  They don’t treat me with kid gloves, which I appreciate at.  They may scoff a bit at a morbid thought, but they don’t outwardly criticize or make me feel bad about it.  They talk about the future, they support how I’m going about things.  They are pretty fucking awesome to be honest.  And I’m grateful for getting to spend time with them, and the multiple hoops pretty much all of us jumped through to make it happen.  Love you guys.

My current treatment continues to go well (really glad I ordered another dose sent here to ID given my prolonged stay…) with no real side effects.  Another month or so and we will rescan to see what if any positive impact it is having.  I had labs before I left that showed really stable blood markers, so it’s perhaps really good timing I’m having my bout of COVID when I am not really immunocompromised, or at least not to the extent I have been for most of the past year and a half (it’s been 21 months since my diagnosis…what?!?).  

So we’re still up to our eyeballs in a pandemic, people are impacted by crazy changes in climate (thankful I don’t know of anyone personally to lose their home in the CO fires, but it can damn close to some of my best friends), there’s whacko vocal idiots at every turn, and I still have a terminal disease.  But the last 3 weeks have been restorative and sparked a lot of gratitude for the good things.  

Last year I downloaded the One Second Everyday app.  Essentially you upload a video or photo (usually mine are just Live Photos) from each day.  I don’t really record intentionally, which is why some days are pretty lame and more screenshots and randomness than anything else, but it’s a fun and relatively easy way to look back at the year.  A friend pointed out that my year was basically travel, cat, lab, travel, cat, lab.  It’s pretty true!  And I’m not complaining!  

Here’s to a 2022 of shrinking nodules, better discourse, action to preserve our planet, many more good times with my cat, in the lab, and with people I love!