Gliding along...and then "disaster-zole" struck

This has been a very rough week for my cancer treatment.  After a successful surgery, a low oncotype dx test result which eliminated the need for chemotherapy and sixteen radiation treatments that were classic textbook experience, I figured I was on the downside of this mountain that had thrust itself in my path five months ago.  All that was left was a little pill to take each day, an Aromase (Estrogen) Inhibitor to prevent the fueling of any recurrences.  A piece of cake.  After all, I had dealt with estrogen inhibitors before.  In my late thirties I was battling a stubborn case of recurring endometriosis. My doctor  prescribed a different inhibitor to essentially shut down my ovaries and keep that nasty bugger at bay.  It went beautifully with no side effects and eventually transitioning me into menopause. In my mind this would be no different.

I couldn't have been more wrong.  After nineteen days of taking Anastrazole, the side effect train arrived this past weekend, barreling into town fully loaded and aimed right at me.   At first it was a gentle cough, annoying but not debilitating, usually popping up in the late evening. Insomnia was the next issue, allowing me to get to sleep but only for short intervals.  I spent hours staring at the ceiling, listening to gentle music, not allowing myself dark thoughts...all to no avail.  The body aches were next, stabbing shots through my knees and ankles, gradually working their way up to my neck and shoulders. Then came the nausea, waves and waves of it, peaking on Sunday.  Smells of Brendan cooking meals downstairs were cues for my stomach to turn somersaults.  Needless to say, I skipped the visual and tasting experiences. Serious depression (another side effect) was closing in.  THAT was when I said "NO MORE" and stopped taking the Anastrazole.  I left my doctor two messages on MyChart, called the office Monday morning (Who knew it was a holiday...I can't even tell you what day of the week it is) and on Tuesday got verification that stopping was the right decision. 

It has been four days since I stopped and am still wracked with neck pain, have developed Angioedema (a series of hive-like welts on my legs and torso), experience pop-out-of-nowhere periods of nausea and depression throughout each day, become fatigued just doing nothing, and am still dealing with the nagging cough.  I recently bought a new FitBit, and according to its sleep manager I still can't manage a decent sleep score above 6o percent.  I know this medication has a long half-life which means it will take a while to get out of my system but it really needs to happen SOON. 

Thankfully, my oncologist seems to be on board with this process.  His office called to set up a "Tele-Health" appointment for mid-May where I can outline my problems and we will come up with another option. I suspect he is waiting until then to allow the full set of effects to hop that train and get OUT of town. I would love to sit down with him in person but this damned virus makes that just too risky. 

This has, by far, been the worst part of the journey from the moment I was told about these tumors. I hoped that this would be the climb out of the abyss not the hellish nightmare it has instead become.  I have reached out to other women via Facebook (would you believe there are actually two support groups for Breast Cancer patients taking this drug?) and their experiences are often quite similar.  Sadly, a few have said that their oncologists are insisting they stay with the medication.  My advice to them was to find a new oncologist.  No one should be put through this hell, regardless of the outcomes. The thought of spending four or five years in this state of misery is totally unacceptable.  Life is too short. 

I apologize for the "Debby Downer" tone of this blog post. But I believe in the principles of Full Disclosure.  If I am going to document this episode in my life, it has to come with all of the scars and pimples.  I feel extremely fortunate to have had a relatively easy trip through this Chamber of Horrors.  My procedures and outcomes have gone well.  I dodged a LOT of bullets.  I have an incredible medical team, as well as a support system of family and friends that I give thanks for every day.  This is not a journey I chose to take but, since I was given no other option, I need it to be as much an expression of me as possible. That means including the high points as well as the occasional low, like this.

This too will pass...there is a solution out there for this problem.  With time, prayer, and the diligent efforts of my team, we will find it.  And the good times will return.  

Ready...Set...NO!

Suddenly everyone is talking about the end of the Covid-19 quarantine and easing social distancing.  There are protests around the country by people who want to return to life as we knew it before this disaster struck.  It hasn't affected them so obviously it is nothing to worry about.  HOLY CRAP, PEOPLE...are you living under a rock or are you JUST PLAIN STUPID?

I get it...being confined to your house alone or with a partner or with a bunch of restless kids is really wearing away the fabric of your sanity.  You are running out of ways to keep the day interesting and are starting to feel like Bill Murray in Groundhog Day.  The weather is turning nice and those beach walks and nature hikes are so inviting, not just to you but to all of your neighbors as well! The money is getting tight and the future status of your jobs and businesses is uncertain at best.

But we are still dealing with this deadly virus in all aspects of society.  The numbers are still spiking in the U.S...18,558 NEW cases and 1090 NEW deaths just yesterday (April 17) according to the Center For Disease Control (CDC).

Yet, officials, under public pressure opened beaches in Florida which immediately filled with sunbathers, walkers, dog owners, surfers, and swimmers, ignoring any distancing rules and making them top contenders for the Darwin Awards.*

The number of South Dakota residents who have tested positive for coronavirus has surpassed 1,100, and more than half of those cases have some connection to the Smithfield Foods pork processing plant in Sioux Falls. This comes as Governor Kristi Noem reiterated Tuesday that she won't be ordering people to stay home amid the coronavirus pandemic. Health officials said Wednesday that 180 more people tested positive for COVID-19 in the last day, bringing the statewide total to 1,168 confirmed cases. Of those, 934 cases were in Minnehaha County, the location of the Smithfield Foods plant, making the site one of the largest known clusters of COVID-19 cases in the U.S. As of Wednesday, 644 people with connections to the plant were infected, including 518 employees.

Protests in Michigan and Ohio are angrily demanding a reopening of the economy so unemployed workers and small businesses can see a return of paychecks and cashflow. 

But what good will that economic stimulus do them if they fall sick and perhaps succumb to this deadly virus? Or, if they end up bringing it home to more vulnerable members of their families: elderly parents, immuno-suppressed spouses and children.  Do they want the deaths of those innocent victims on their hands?

This is the most serious threat to the nation's collective health that we have ever seen.  Our health care facilities are not equipped to handle significantly more victims.  Life and death decisions are being made each day, forcing medical professionals to prioritize which patients will have access to the short supply of ventilators and other medical assistance.  In addition, we are placing the lives of these health care professionals at high risk. Nearly 10,000 professional health care workers have died of the virus to date, a heartbreaking and devastating loss at a time when the need for their expertise is at its most critical. Many are making huge personal sacrifices, often relocating from their homes to avoid exposing their families, and working countless hours on end.

So, can't we all just sit home a little longer and give the virus a chance to subside naturally. Research has shown that staying out of public is the most effective way to stop the spread. Wearing face coverings, washing hands frequently and using hand sanitizer are effective but if we're not there to begin with we can't pick up the virus. We need to extend the opportunity for medical researchers to find an effective treatment and work on the long-term hope of a vaccine.  Patience, People! Put away the "I want" in favor of the "I need to..."

This is not the garden variety flu that we are used to. It doesn't spike and recede with the seasons.  It requires us to be so much more vigilant and pro-active if we hope to ever be able to return to some semblance of normal...and that normal is likely to be very different than anything we have ever known.

STAY HOME...STAY SAFE

*The Darwin Awards commemorate individuals who protect our gene pool by making the ultimate sacrifice of their own lives: by eliminating themselves in an extraordinarily idiotic manner, thereby improving our species' chance of long-term survival. In other words, they are cautionary tales about people who kill themselves in really stupid ways, and in doing so, significantly improve the gene pool by eliminating themselves from the human race.

Extroverting in a Shut Down World

I am an extrovert...extreme.  Contact with people is as essential to me as food, water and air.  A quarantine goes against every fiber in my body. I understand and agree with what is happening now 100 percent, believe me.  But my inner child is screaming "Let me OUT!"

My husband, Brendan, is an introvert...extreme.  He is never happier than when he is home puttering around the kitchen, poking around on the computer, working on a jigsaw puzzle or playing with the dog. How we ended up together is a story for another time but it has worked very well for over 44 years. 

In a cruel twist of fate, he is also the only one allowed out to do the essential shopping and chores since my immune system has been compromised due to recent radiation for breast cancer.  He picks up whatever we need during the designated "senior shopping hour" and races home as fast as he can, grateful to be in the familiar confines of home again. As soon as he gets home, I beg him for every detail of his excursion, desperately navigating a virtual trip to the store through his experience. Once in a while I am allowed to go, but only to sit in the car, so tantalizingly close to the hustle and bustle of people but forbidden to partake in the experience.

This will be our new normal for the forseeable future.  I take every opportunity to walk outside and embrace the onset of of Spring in our yard and in the neighborhood but what I really want to do is...dare I say it...BE WITH PEOPLE!  Brendan understands this and is very sweetly making attempts to be a sparkling conversationalist for my sake. However his comfort zone can only stretch so far and eventually the pain becomes obvious, something I call the "spinning eyeball effect" and I end his agony by retreating to my craft room to knit, read, watch tv or scan the internet.  Under normal circumstances, I could make a quick call or email to a friend for a coffee shop rendezvous and relieve the pressure for him but these days...not an option. 

I know there are a lot of us "E" types out there so I have begun to develop some coping strategies and hope others of you will share.  Together we can and will get through this. 

Here are some of my personal E-people tips for survival of this craziness:

* The refrigerator and cupboards, actually the entire kitchen, will NOT ease the pain.  I know E-friends who are using baking and cooking to substitute for social interaction.  All well and good if you can deposit the end results on someone else's doorstep instead of in your own piehole.  I have no such self-restraint (besides, the kitchen is Brendan's staked-out territory, requiring me to submit a prior reservation complete with substantial justification for the invasion of his turf...and he knows too well my propensity for boredom eating). I remind myself that when this is over it would be so nice to fit in the same clothes I wore when this started.

* Daytime television is a mind-numbing wasteland, especially when paired with the kitchen issue outlined above. As E-folks you will find yourself carrying on conversations with the screen OUT LOUD, denouncing the stupidity of what you see.  This is not a good mental health outcome, especially if you live with others who will overhear you and feel compelled to conduct an intervention. Don't ask me how I know this.

* Practice moderation in your pursuit of recreational activities.  Those crossword/jigsaw/sudoku/wordsearch puzzles will take on sinister attributes after the first five or six hours.  You will find yourself viewing knitting needles as potential instruments of self-harm after mindlessly knitting fifty straight rows and then discovering that you have been knitting the wrong pattern for forty five of them.  Rereading the same paragraph six times and STILL not remembering what you read means it's time to put the book down.  Take frequent breaks to walk up and down the stairs (laundry might actually be a pleasant diversion with surprisingly productive results) or, better yet, take a walk in the yard or around the block, avoiding the temptation to stop and visit with anyone BECAUSE YOU COULD DIE. (Is that enough of a deterrent to curb the impulse?)

* Take firm hold of the long to-do list you made at the onset of this debacle...you know, that "all those things I should be doing now that I have time" list and emphatically tear it into teeny tiny pieces, then place said pieces in the recycling bin.  You're not going to do them so just get that notion out of the way up front.  When this is over your closets will still be full of clothes you wore six sizes ago, your windows will be just as dirty as they were in February and that box with forty years worth of pictures and memorabilia will still be under your bed.  Instead start each day with the knowledge that you will do whatever the hell you feel like doing that day.  Your morale will thank me for that tip.

* Speaking of starting the day...DO shower and get dressed.  After  weeks of this crap there is nothing more depressing than finding yourself in the same pajamas every day at three o'clock in the afternoon. Your roommate/spouse/significant other/pet will thank me for THAT tip!

* Modern communication is a marvel...email, FaceTime, YouTube, Zoom, Facebook...all have brought us closer together but they have a dark side.  Keep your "screen time" to a reasonable minimum.  If you are a news junkie, set aside a specific time each day to check the latest information. Too much dire, depressing and often sensationally untrue stuff hitting you all day will eat at your spirits like a fat kid devours Snickers bars.  Find a trusted source and stick with it.  Keep your on-line chats with friends and family short and upbeat with a lot of laughter (appropriately timed to avoid them questioning your mental state) and positivity.  Nobody likes a Debbie Downer or a Peter Pessimist.

* Keep an eye on your neighbors, especially elderly or physically challenged ones from a safe distance.  If you are going to the store, email or call them to see if you can get them anything.  Maybe that single mom at home and trying to keep her sanity with three restless kids could use some groceries or some of those baked goods you whipped up left on her doorstep. (Avoid the temptation to leave a large bottle of wine unless specifically requested to.)  Brendan routinely  produces dinners, soups, breads, etc. enough for a family of six so we have "adopted" our elderly neighbor who lives alone to help us avoid a refrigerator bulging with leftovers. We also offer to pick up groceries to minimize her trips and dangerous exposure.  She will call to request something or thank us and that's when I can get a bit of a social fix on the phone.

* And, above all, remember that this situation is temporary. There WILL come a day when we can leave our houses and apartments, come face to face with our loved ones and neighbors and indulge our natural inclinations to socialize as much as we want...no masks, no obligatory hand sanitizers, no six foot separations.  The Introverts can stay at home if they want...we won't judge them.  Truth be told, they will probably be very happy to have us out of their space!

Hang in there, everybody.  This too shall pass.