Sibling Trip from the Sibling Perspective

 [Editor's/Anne's Note: Please enjoy another guest blog from my brother Marc...an amazing dad, outdoorsman, lawyer, etc.]

Disclaimer:  Couple things off the bat.  I don’t know how to write a “blogpost”.  I’ve only read like half a blog ever (this one) so this will likely be “wrong”.  Like in the “that’s incorrect” sense.  Also I was told to be myself and whatnot which may come across as sarcastic bordering on mean-spirited, blunt, and full of foul language.  So in that sense it will also be “wrong”.  Like the “what is wrong with you?” sense.  So if you are starting to read this and want the correct, clean version here it is:  We went to West Virginia, it was a lot of fun, Anne is amazing, the end.  If you want the real deal, you’ve been forewarned.

 So I was asked (guilted? tasked?) to do a guest blog on here, and by here I mean this Word document I am writing this in because the only instructions I got was to do it.  Like writing a guest blogpost is akin to grabbing some milk while you’re at the store (and even that would require a little more guidance, like if you want it from an udder or a nut, and what percent, and holy shit even buying milk is a chore now).  So I am probably already screwing this up, but hey, you get what you pay for I guess. But from the limited guidance I was given, I’m pretty sure I am supposed to tell anyone who is interested about the trip Anne took with her favorite sister, her other sister, and her only brother, me. 

The trip was sponsored by a company called KW something or other and they are really amazing, allowing people like Anne to do amazing things with their families.  Not sure they totally understand how booking airfare works, but a small(ish) price to pay for the opportunity it afforded us siblings to hang out together for the first time in our lives without parents, spouses, kids, etc.  So of course, we went where any group of siblings would go if they had a chance to take a trip together for the first time:

 No seriously, that’s where we went.  There’s a good reason for it and it was great, but do you know how many times when I was talking to people about not being at work for a few days and they would be like ”where you going” and I would say “West Virgina”  and they would look confused and then say “sorry?”? All of them. 100% of the times. But whatever, fuck those people (for lots of reasons, but at present for shitting on our trip). The plan was to do some epic whitewater rafting on the New River, and spend the rest of the time hiking, or paddling, or hanging out, or doing whatever we felt like.  Basically, we were all going to pretend to be Karyn for a few days, except Karyn who would just be herself but in 90% humidity.  So we had the plans and as much as it probably annoyed the shit out Anne not to be able to, someone else made all the necessary arrangements for us to have our first ever Sibling Hang.  First stop, Cincinnati, Kentucky!

 Fun fact, did you know that the Cincinnati airport is in Kentucky?  Me neither.  Not even while I was in it, despite the plethora of random bourbon kiosks littering the airport which could have been a clue.  ‘Nother fun fact, did you know that neither Cincinnati or Kentucky are in West Virginia?  I did know this one (Kentucky is like a totally different state I’m pretty sure), but we were assured by our fearless leader Anne, that our destination, Fayetteville, WV was a relatively short drive from the Cincinnati airport, which, we all just learned, is in Kentucky.  So once we all met up, we were on our way.

And we are just now getting out of the fucking parking garage.  First we got knocked over by the actual air walking out of the airport.  It’d been a while since any of the rest of us had dealt with humidity so it took a minute to pick ourselves up and get ready to go to the car. Then what Anne referred to many times on the trip as “Chemobrain”, kicked in full force and she couldn’t find her car. This would be the first of what would be very few times that any of us could actually contemplate that Anne had just recently had a chemo treatment.  And by recently, I mean like 2 fucking hours before.  Like she came from the treatment to pick us up at the airport (in Kentucky) so we could drive to West Virginia. She didn’t do what a normal person would do, go home and sleep for the rest of the week.  She purposely drove to an airport so she could then go on a road trip with her obnoxious siblings.  There are really few words to describe that, but the ones that come to my mind are, brave, awe-inspiring, and stupid. Once we finally did find the car, we ringed the sweat out of our clothes and hopped in the car to … drive around in endless circles.  This fucking parking garage, man.  We shoulda known.  First off the entire airport is lost.  It thinks it’s in Ohio but it’s actually in Kentucky, so I don’t know what anyone can really expect.  But just like the secret u-turn you have to take walking throught the airport to get to the garage in the first place, there’s all these ill-placed signs and the thing was like 28 stories high.  It was a 47 right-turns nightmare.  And we ended up driving around for 45 minutes before actually leaving the airport.  Only four more hours to go!

At this point, if you are still reading this you are probably like, whaaaaat the fuck dude, this is supposed to be about the trip you took, like the shit you did, not driving around a parking garage.  But two things: one, when it’s your turn to write one of these, do it however the hell you want, and two, the car ride really set the tone for the rest of the trip.  I will not now, then, or ever, say I am glad we planned a 5 hour road trip after 10+ hours of flying into our trip, but it did give us good idea of what we had gotten ourselves into.  For one it was our first introduction to Anne’s cancer cough.  It happened, we all stopped and were like “are you ok””do you need some water””can we do anything” and Anne told us she was fine don’t worry about it, it happens, ignore it.  And then it happened again and we tried to ignore it.  And then it happened again, and we felt like dicks for ignoring it.  So we said “Yo I kinda feel like a dick just stopping mid-sentence when you start coughing, waiting for you to stop, and then picking up like nothing just happened” to which Anne replied (I’m sort of paraphrasing here) “Tough shit, it’s my cough, I’m fine, ignore it and move on”.  So that set the tone for what I can only describe as one of the most awful sounding coughs ever and realization #2 that Anne was dealing with some capital s Shit and is incredibly adept at making the best of it.  So for the next few hours we marveled at the trees and the gas prices and talked an laughed and jumped some lady’s battery at Bob Evans and ate and talked and laughed some more.  

Then I yelled “fuck you” at a racoon that ran across the road, which I thought was reasonable but others thought was strange, we drove down a dark windy road into a West Virginian “holler” where it got so humid that the windshield fogged up (get new wipers Anne) and we were basically driving blind, we missed the road to the house because it looked like a fast food drive-thru lane, and then finally made it. 

The house was cool.  No one really took any pictures or anything because at this point it was dark, we’d all been traveling for like 20 hours, and had eaten a ton of chicken fried steak at Bob Evans and the worst hamburger ever at the airport, so we went to bed.  But here’s the two pics of the place I found, one of the steps going up to it and another looking off the porch during a rain storm.  There totally was an inside though, and it was nice.  Just not photo-worthy I suppose.  I mean who takes pictures of couches and shit?

     

The next morning we woke up, got some coffee, and Anne said the word “listicle” for the third time in less than 24 hours so we banned that word and were introduced to a new one, “oldmanjoe” which apparently is not a elderly guy named joseph, but the word for putting two words together like list and testicle to get listicle. 

 

Anyway, oldmanjoe was definitely not banned for the rest of the trip and we headed over to the New River Gorge National Park for a short hike along a ridge that looked down to the New River where we would be rafting the next day.  It was beautiful.

     

           

And fun

          

     

 

And we saw some cool stuff

  

 

If you had your sound on for that last video, that’s not what a centipede or whatever that is sounds like.  That’s what the forest sounds like when Anne is hiking in it.  Like for real, she wasn’t really all that close when I took that video.  But she just kept hiking.  And coughing.  But hiking.  Which makes sense because at this point it had now been like nearly 24 hours since her treatment.  So no big deal.  No wait, it is a big fucking deal, as Karyn, who had been through treatments for her cancer would attest to for like 100 times over the next 5 days.  And I don’t say that as a knock on Karyn at all, but as a testament to how easy it was to forget what Anne was going through.  Like it was necessary for someone to be like “Uh, you shouldn’t be able to be doing all this” all the time to put in perspective for dopes like me what we were all witnessing.  It was truly amazing.  Like the actively-receiving-chemo-patient was the third most exhausted person after the hike, which shouldn’t be the case.  All centipede scaring aside, it was nothing short of incredible. 

 

We ate really well the whole trip.  Too well according to my pants when I got back.  I don’t have a picture of everything and in what order we ate it, but you ain’t going hungry in Fayetteville WV.  And while I will leave the carrot hotdogs in West Virginia, I am on a mission to get a Biscuit World to open up in Idaho.  Look at this beautiful son of a bitch:

 

Cards and pizza that night and then waking up to head to the river to raft the next day.  And it was awesome.  Super cool place Anne had been to before and amazing whitewater.  And not just the rapids, like the water itself was amazing.  It was 75 degrees.  The water.  Not the air, the water.  It was like rafting in a bathtub.  Usually the most dangerous part of falling out a raft is the initial shock your body has when it hits the cold water, which causes you to not think straight and swim where you aren’t supposed to and get yourself into trouble.  But not here. No one on our trip fell out, but one of us was pushed out, and you almost wanted to get back in the boat not because of the undercut rocks the guide warned you about, but because it was cooler in the boat than in the water.  But don’t get me wrong, the rapids were amazing too: 

It was a total blast.  And Anne was amazing.  She once again impressed, even if she did look like she was shitting her pants most of the time.

 

And props to Karyn as well.  Even though she is still recovering from surgery, she was gritting her teeth and getting it done.  Literally:

 

And to Sarah as well for having so much fun and being big enough to admit she pushed me into the water.

 

And last but not least our guide (Scott maybe(?), I know his nickname was an oldmanjoe but I can’t remember it) for waiting until hour 3 of being with people he just met to drop the phrase “big ‘ol fucking titties” while telling a story about a bong he made.  Your restraint, and knowledge of the river, was greatly appreciated, even if your bird jokes weren’t.

 

Afterwards it was showers in water colder than the river and shopping for souvenirs of which I bought way too many before heading up to a bar where you get to toss back drinks and watch a video on the tv’s of the trip you just took.  

 

Then downstairs for dinner and pepperoni rolls and then back to the house where shit got real.  Not the capital s Shit that Anne is dealing with, just the shit that comes out when you have a chance to talk with your siblings with no other distractions going on.  I’d like to think that a day spent on the river, had something to do with it, the words and emotions flowing like so much water released from the dams of our everyday lives, but more likely it was the dark and stormy’s at the bar.  And all we really ended up talking about was that Anne is a total Badass and that Sherri’s Berries are fucking disgusting. 

 

The next day was paddling around some lake in the morning, which was nice and relaxing.

   

Until we got caught out in a storm. Then after breaking Anne’s sideview mirror off her car, and grabbing West Virginia bratwursts with some goats…

 

…Anne finally took a nap.  Literally the first time she let herself rest since her treatment.  The rest of us bought more souvenirs and pounded some loaded deviled eggs because when you walk past a food truck selling loaded deviled eggs and its 95 degrees out what else are you gonna do.  

 

Then a dinner odyssey that started with a closed taco truck, then turned into an absolute deluge of rain that produced a double rainbow, 

 

and ended with pepperoni rolls from a gas station (just for me), before more cards and talk and laughter back at the house.  Oh and lightning bugs! 

 The next morning it was time to pack up and head to breakfast in an old converted church, where we bought more souvenirs, and then headed to a pretty cool waterfall.

After that it was off to the Cincinnati, Kentucky to catch our flig…well shit, they just got delayed, and wait that gets to Chicago after our next flights take off and what the hell, fuck it, lets get to the airport and figure it out.  This ride was much less eventful than the one heading out due to Anne sleep mumbling through most of it after finally giving herself a chance to rest, and the fact that we had all just spent like 4 days talking with each other and had run out of shit to say. 

Anne left us at the airport and drove home so she could take a nice long, well-earned rest until…*checks notes*…the next morning when she was heading out of town to a conference.  The rest of us rebooked our flights, got a room at a hotel that only an airport shuttle could get to and from so we had to shuttle back to the airport to get an Uber to Raising Cane’s (yeah we took an Uber to a fast food place) and then jaywalked across a state highway to watch a movie before ubering back to the airport with a guy who was about 2 more rides away from taking his passengers into the middle of the woods and murdering them, so we could take a shuttle back to the hotel to sleep for a couple hours and then shuttle back to the airport to fly home.  But Anne was coughing on her cat while all that was going on, so a story for a different blog. 

And mostly what we did after she dropped us off was talk about how amazing Anne is.  She always has been so it’s not really new, but just amplified with the Shit she is dealing with.  And we siblings should take some credit for her being so.  Not necessarily for anything we did or said (honestly probably in spite of most things we did and said) but just because we existed, were the older sibs who Anne always thought she had to be as good as, even after she surpassed all of us a while ago(some of us when she was like 6 and presenting book reports on dogs to the rest of us during dinner in the middle of summer for fun).  Watching her deal with treatments and chemobrain and that cancer cough and just the generally shitty hand that life dealt her with her diagnosis with such an amazing attitude and such courage is inspiring.  Like actually inspires you to do the hard things you don’t think you can do.  I mean I didn’t think I could eat this entire bag of Dot’s chicharrones while I was writing this, but I did.  So thanks Anne.  But seriously, you are inspiring and amazing and you need to remind yourself of that more often.  Or, use the tools in your brown paper bag. Winkeyface emoji.

So I think that’s it.  It really was an amazing opportunity and a great time and I am thankful we were able to do it.  I think we each got to learn a little something about our siblings on the trip which was cool too.  For me, it was that all my sisters, no matter their challenges, or apparent lack thereof, are all strong, smart, fun women, who just also happen to be incredibly terrible tippers.  

[Editor's Note: Thanks Bro.  Portmanteau is an awesome word.   You're just a really generous tipper.  And it's the Karen Wellington Foundation that helped make this happen, nominations by Alexis and Amy, generosity from Mom/Babs, and families letting ya'll take a few days...thanks all!]

 

Trips, Tattoo, Treatment and the Tingles

 Jambo!  Swahili for hello!  

TRIPS

I have to start with Africa.  If you missed Erica's guest post, go read it now....I'll wait.  Isn't she great?  Wasn't the trip great?  Yes, and yes.  

Seriously, Africa was a great trip and Erica did a great job with the details, picture, and linking to the quick video of highlights I put together.  If you haven't watched it, here it is again.

I'll run down some of my highlights and thoughts:

• Erica is a great: travel buddy, person, professional (ahemmm Educator of the Year...MSU All-College Teaching Award, among many other accolades), hype girl, empath, energy healer, conversationalist, the list could go on and on.  From when I first pitched the idea to her, she's been a fantastic partner.  The GoFundMe she organized that way too many people were way too generous with was the icing on an already sweet trip and plans.  While we were in Africa, she put up with my coughing, sleep apnea, reduced capacity, and overactive mental state.  The energy she brings is infectious....any of our guides could see it.  She brings out the best in people, including me.  Thank you friend for your role in such a fantastic trip!
• We picked a great operator.  Bernard and his team at Nziza Hospitality, the folks they contracted with, it was all great.  If you're considering a safari, consider them...and reach out to me for a bunch of other notes and details we paid attention to that I'm happy to share.
• The experience was really grounding.  There's something about observing animals and their behavior that really connected me to earth, time, etc.  Granted, many of these animals are "used to" humans, so the "natural" quality of their habitat could be questionable.  But they are there naturally, with their families.  And you can see it!  The boisterous young elephants being herded along my older siblings or mothers.  Brothers feasting together on a kill.  Males kicked out of the matriarchal groups that find each other for support and company.  Multiple animal species living alongside each other together, sharing resources.  I could watch elephants walk all day.  I could sit and stare at the baboons who stare back at you.  I could spy on the big cats with my telephoto lens, and hold my breathe when you lock eyes.  I wasn't on my phone (except for pictures), it was fairly simple eating (simple and delicious are not exclusive!), and lots of open space, and when it wasn't open, it was still beautiful.  
• A lot of folks have asked what my favorite part was...it's a tough question when there were just so many wonderful things.  The gorillas were a shining moment, probably made more memorable by the very real struggle to get there.  I guess my body does still have some fight.  I can do hard things. My stubbornness can be an asset (I think that's when we call it resilience?!).  But there were plenty of small moments that were just as great, and the trip as a whole, doing it, not letting various things stop us, was also a highlight.  
• I'm still processing.  We saw so much, met so many people, heard so many stories.  Thanks to the beauty of technology, things like WhatsApp and Instagram, we're still connected to many of them. We've gotten updates about the wonderful work our new friend Enos has done in Western Uganda empowering women and children through his Child Go Foundation.  Our guides have checked on my health and how our return has been.  There was a lot to take in personally, and also what we saw in passing (UN Refugee camps) or more intentionally (Genocide Memorial in Kigali, Rwanda) in regards to the greater world, our country, and changing times.  I love the thinking and connections that travel forces for me.  

Africa was "the big trip" this year (and probably of all time!), but it's not the only trip I have made/will make.  I made a VERY quick trip up to the Upper Peninsula of Michigan to meet up with most of the core group of high school girl friends that have stayed in touch over the years.  People may have thought it was crazy to take 4 flights, drive 2 hours to and from airports for basically a day of hanging out, but these ladies are worth every minute of it!  

 

And I've got a few more trips before really getting back to reality and classes starting.  After a COVID induced delay, my siblings and I, courtesy of the generosity of the Karen Wellington Foundation, are headed to wet and Wild West Virginia for some rafting, hiking, and hanging out.  The four of us have NEVER spent any real time together without spouses, kids, parents.  Should be lots of fun!

I also have a work trip to DC for an exciting initiative from my professional society and will get to see some great friends and colleagues while there.  

TATTOO

I did a thing and got a tattoo!  Add it to the list of life achievements!  People have asked why, and honestly, there's not a super great reason.  Maybe because given my likely early expiration it is less of a commitment.  Maybe because I watched a lot of InkMaster in the past few months.  But yeah, here's the upper leg tat.

Katie Hutchins at Wells and Co did a fantastic job with the design and application.  

What is the design you might ask?  Well, the center is two wolves, one white, one black.  You may have heard/seen the story of the 2 Wolves Inside You...basically the white is good, the black is evil, and the conclusion is that the one you feed will win.  But other tellings of the story go a bit deeper, discussing the eternal fight within us, that sometimes we need that black wolf, and that really you have to feed them both in order to find peace and guide them both.  

The two phrases around it are both Stoic mantras.  Stoic like old school philsophy, Marcus Aurelius's Meditations, Seneca, etc.  It's something I've gotten into a bit in recent times, mostly through the approachable Daily Stoic/Ryan Holiday modern take.  

The latin translations:

amor fati - love one's fate

This one is all about not just accepting things both good and bad, but loving them.  Taking the 'bad' and making it advantageous.  If there was a phrase that inspires my own approach to cancer, it's this.

memento mori - death can come in a moment

This one is about the fact that death can find you in a moment, and thus, you shouldn't take life for granted.  This one goes beyond Stoics, for sure, but is a central tenet.

So yeah, things I thought were good reminders.  The design is specifically done so that it's "right side up" for me when I look at it (like every time I go to the bathroom), but also when it is looked at.  Upper thigh allows me to show it when I want, but it's mostly hidden.  It's for me.  

TREATMENT AND THE TINGLES

Oh wouldn't it be nice if this was just a travel blog where I showed a new tattoo and checked in on what was going on in life?  Not sure that anyone would really want to follow in that case, but alas, we all know there's the elephant in the room (not the ones I saw), but that beast that is my metastatic cancer diagnosis.  

You might remember that I had been on some hormonal treatment with a bit of a molecular 'kicker'.  And that there was a happy hug 3 months in.  And then in another 3 months, a not so happy appointment as there was progression.  We biopsied the lung mets (through the bronch scope) to check to make sure it was the same type (it was).  

So back to infusion chemo.

This time it is Ixempra (ixabepilone).  It's one of the couple remaining types of chemo I haven't yet tried in my previous 6 lines of treatment since May 2020 and the metastatic diagnosis.  The infusion is once every 3 weeks.  It's slow, about 3 hours.  

I had my first treatment Wednesday, July 13.  And you know what, chemo CAN suck.  This was really the first time, or at least since back when I first had my "big" treatments in 2014 that it really sort of knocked me out.  I rode a nice steroid high (one of the things they give along with anti-histamine and anti-nausea in the pre-treatment cocktail) through Wednesday that petered out Thursday afternoon.  A busy Friday work day kept me distracted till the afternoon at which point I had to call it a day and head home.  The weekend was all laying.  Laying and aching.  Trying to get comfortable, not succeeding.  It's a general kind of all over malaise/ache that might resemble what some people go through with COVID.  Your body hurts from the inside out.  A side effect of the drug can be neuropathy, pain in the nerves which can be felt as tingling or pain.  Had some good zingers in my feet, a few in my hands.  So it was a pretty shitty couple of days.  But, fortunately, I rebounded well.  By Tuesday I would say I was back to fairly normal.  And since, have been feeling well (though sadly the cough, which got way better when I was first back is making a return).  

I'll see my doc this week to do labs and see how much blood counts have dropped.  I was able to get the prophylactic COVID shot (Evusheld) to help prevent getting it. And, like many other infusion chemos, hair loss is a side effect and based on this result from running fingers through my hair at work (and similar in shower), I'm not avoiding that.  That's the other tingles...the scalp feeling that comes with the follicles dying and being ready to fall out.

I may still try to make it through this weekend (a wedding to attend) and the 1st (filming for some UD stuff) before shaving, but we will see how it goes.  In some ways the hair loss makes it easier because it makes the cancer more visible.  More visible so when I'm out of breath or sweaty from just walking across campus, maybe it's not just a judgement of my current weight.  More visible so that if I'm a little tired at times or struggle to recall a specific word (chemo brain is real folks), there's a bit more patience.  And yet, it makes it feel more real, for sure.  

The side effects of this drug, like any, are typically cumulative. We'll do 3 or 4 treatments before a new scan to see if it's working.  It's not the last arrow in the quiver but we're getting close and this may be a case where I also start to think about the risk-reward ratio of various treatments and their timing.   I'm hopeful I can keep up what is left of my strength/endurance and continue to maintain similar activities, but really, time will tell on that.

****

As the summer begins to come to a close (HOW is it almost August?!), I hope you've found time for rejuvenation and reflection as I have been so lucky to!  Stay tuned for how it continues to play out...

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!