Finding Joy and Acceptance During Health Challenges

I need to rewind the calendar back to 2013-2014, so humor with me if you will. Following surgery to remove a 'very harmless mass' came the chordoma diagnosis. The consensus by experts was to have intensive chemotherapy as a next step that each infusion had a 1% chance of killing her, hence the inpatient chemo. Madison's eight rounds of chemo (64 daily infusions, 80 days hospitalized for chemo alone... over ~5 months). Each round left her void of an immune system dropping her white blood count to zero. Was she careful avoiding infection? Yes, very. Just before Christmas in 2013 she developed a temperature of 102 so off to the hospital for IV antibiotics. Was she being really careful, yes! Did she mask-up when going out when her immune system was compromised? Ummm, no. This was a really rough go for her;  not only feeling so horrible after chemo, but then incarcerated in a hospital for 3-4 days. On Christmas Eve three people walked in to her room staying somewhat distant and whispered "we heard you were here and brought this for you". We thought they had the wrong room; neither Madison nor I recognized them so I asked who the gift basket was for, they said "Madison". We responded "this is so nice, are you from her church, or...?". They were somewhat evasive, and backed out of the hospital room wishing Madison a speedy recovery versus merry Christmas. Wow, they were good... they knew what not to say (have a Merry Christmas). I asked the nurse who they were: she replied that they come in every year and prefer to remain anonymous. The gift basket had slippers, a gift card, back scratch wand, fuzzy hat, more goodies, and a get well card that was signed by about 20 people. This touched us to our cores... me, Madison, and her moms. I suggested to the nurse that a proper thank you is in order and we both know I'm not going to let this one go... 'please, let us thank them... we need to know who they are". She finally caved: it was from the employees at Whole Foods in Woodland Hills.

Once discharged, her then-boyfriend Rodger was respectfully distant during visits. As he was leaving one evening I asked "aren't you going to give her a kiss"? He figured I was kidding until I pulled a sheet of plastic wrap I had stashed by the front door. Even PJ was trying to be safe, versus trying to scratch it off his head. He sensed something was awry with his human; you can see it in his eyes. (yes, we sneaked him in one evening per her doctors suggestion).  

A couple of weeks later I went to Whole Foods with a thank-you card from Madison. Knowing 20+ people signed it, I walked in requesting to speak with the manager. Asked who I am by a clerk, I replied simply that I'm "Madison's Dad". I was afraid I would tear-up waiting, but took comfort knowing that we Martians don't do that and I hung tough. A young woman walked up and introduced herself and asked how she could help me. I recognized her: she was one of the three who came in to the hospital room, and I started to choke up as I explained that I recognized her from the hospital, and that Madison, her mom's and I wanted to express our sincere gratitude to everyone involved. By that time I finished that single sentence, I was crying... then she had tears flowing. Through the journey thus far, I hadn't yet cried, and then I found myself weeping like an 11 year old Amish widow. Concerned store employees slowly approached wondering who the bad man is making their manager cry too, some spilled milk perhaps? Choking back her own tears, she explained to concerned onlookers that I'm the father Madison, a gift-basket recipient on Christmas Eve. I suspect most employees there had signed many cards that holiday season, and I could see that several were tearing up seeing the manager and me so emotional. Collectively they make huge impacts with their generosity to people tethered to hospital beds in oncology units. Whelp, that did not go as planned!

Fast forward to March 2014: After learning to wear a simple surgical mask when going out in public between chemo cycles to avoid risk when immuno-compromised, it was time to travel to Boston for some Proton radiation. Following that, the second of three major surgeries; each requiring post-surgical intubation on a ventilator. Yep, again.    

Noting the red box above, it's one hell of a daunting experience. 

For a total of 40 treatments days spread three months, Madison would have that mask placed over her face with both the mask and Madison secured within the machine. While she was frightened and frustrated that any of this was even happening at first, Madison remembered and focused on a lesson she learned from Tricia, who was the host of Madison's Young Adults with Cancer group: 'acceptance is not approval, cancer is not OK, this is not OK... but it just is'.

Now then! Let's now touch on... 

...Ventilators, another fun topic, aye?! Intubation on a ventilator following three brutal surgeries because Madison couldn't reliably breath on her own, so either a hose in her neck, or down her throat or nose.

Holy shit, how did we get here again? This is not OK, but we revisited Tricia's guidance that we don't have to concur that this is at all OK... it just is, so with Tricia's guidance Madison became adaptable and found a sense of peace to work forward one step at a time, a day at a time, a month at a time, so 2014 was quite a ride for her. Prior to surgery #2 we learned a great tip and brought two small dry-erase whiteboards because intubated people on ventilators are unable to speak. Written conversations were a challenge at first, but we adapted from a simple requests to deep spiritual written conversations, and everything you might imagine in-between. 

Returning from Boston, four more rounds of chemo strong enough to make a billy-goat puke. Madison, her moms and I knew the exposures of infection, we washed our hands with hot soapy water to prevent germs that might cause an infection, and when Madison would venture out, she wore a surgical mask in public... she had learned her lesson that it's best to mostly hibernate at home, and being mindful of germs and cooties may be on everything she touched. Hot, soapy water to wash our hands.

Because of the covid spread in Southern California, masks are mandatory at Costco, Target, and Walmart. Ventura County has re-restricted indoor dining, barbers, salons, bars, etc. Earlier this week I saw three people at Costco with masks barely covering their bottom lips, which may be slightly more effective than Madison wearing her neck brace on her head after surgery. Granted, she was on the couch, not walking around or in a car so touche, nicely done.

Madison chose to wear a mask following chemo treatments when out of the house. For 40 days and doses getting nuked in Boston, she was strapped to a table a much harsher mask was secured, the risks were huge. How do you find joy during that?! The radiation techs would playfully greet Madison every weekday and she would chose blaring country music some days, rock on other days. While this may sound repetitive or you may see where I've been going, covid is not OK, most in utter disbelief that America is at where we're at; this is not OK, nor do I accept it. Wait, what?! Acceptance is not agreement, right. Right! No, many people still defiantly refuse to be bossed around passing out the stink-eye judging others for wearing a mask, and the people who wear masks... judging those who refuse.

Even worse, we see these examples on TV of fear manifesting itself as fury and defiance, with screaming matches inside grocery stores. Really?! I gotta tell you, WTF. It's only a freaking paper mask when you're inside a store or restaurant; not like you're forced to wear a Hannibal Lector mask strapped to a table inside a machine that will give you enough radiation to make the the knives and spoons rattle when you walk past the silverware drawer.

This dismissal of reality and responsibility is a lot for me to process. I truly don't understand, nor would Madison... I promise you that. She didn't want to wear a mask following chemo at first because she didn't want to look sick, weak, or see pity in peoples eyes. She learned that clean hands and distancing kept her from getting an infection which would incarcerate her in a hospital bed tethered to an IV tree with bags of antibiotics for 3-4 days. Mask-less people today have no clue how many immuno-compromised Madison's they defiantly walk past in a store, a restaurant, etc. Whether isolation or all of the various uncertainties fuel anxiety that overflows as rage or just the stink-eye, they've never sat next to someone they love on a ventilator who is unable to speak or breathe on their own. In ICU wards these days, covid patients on ventilators can't have visitors, physically can't speak, and won't have an RN who has the time to chit-chat passing a whiteboard back and forth. Slowing the spread of covid is everyone's responsibility. Given the ludicrous behaviors, our elderly, immuno-compromised, and people with underlying conditions then being hospitalized is mostly preventable. ICUs suck. The nurses are cream of the crop, but those wards are extremely noisy and an alarm in one patients room alerts all nurses on the floor. Making matter worse given current circumstances, patients and speak because they're on ventilators but even if they could, they're alone... no visitors, and all of the nurses are overextended running around in spacesuits.

So I gotta tell ya, if you're a mask skeptic or flat-out non believer, Madison would tell you unblinkingly "don't be a selfish dickhead', then she'd explain why. As her dad, I echo that. People are frightened on so many levels; I am too with so many  economic, health, and when-will-this-end uncertainty. We Martians don't cry as far as you know, nor are we allowed express any fear or uncertainty... so un-manly. I also see Venetians and matriarchs frightened out of their minds too, numb to he fact that is my reality... nobody is immune to covid. Realistically if I caught it I'd likely survive. That said, Angela and I were at my mom's house last Saturday: at age 83, could she survive it? If for example I was an asymptomatic carrier and gave covid to her last weekend, might she be in ICU in a month on a ventilator unable to speak while an overworked nurse holds a phone next to her ear with me explaining "mom, it couldn't have been me... it had to be Shannon (my sister): I think I heard her coughing a lot when we spoke last...

...on the phone 400 miles away.

I get that as covid testing capacity increases, so will case counts, symptomatic or asymptomatic. My gauge for the medical and economic exposures for any large city or small county is with associated hospitalizations, ICU beds counts, and then freezer trucks. Speaking of Shannon...

...so she called several weeks back and I also spoke with my niece Mallory, who told me about a card that Madison had sent her many years ago: she read it to and asked if I could receive a text while on my phone...yes I can. She had read Madison's words from her arm, and I could see instantly that was in Madison's handwriting. Mallory had taken the card, had the image enlarged and projected, then tattooed. Touched me to my core, as I suspect Madison touched her.

Hiya Mallory - Madison obviously expects you to wait another 80+ years before seeing you next. When Grandpa (my dad, Mallory and Madison's granddad) passed earlier this year, I said a prayer of thanks and sent a message up to Madison: find grandpa Bill, he'll be a tad disoriented and surprised he's There, so chuck a couple of peanuts at the back of his head, then make space at your table. What I believe is my only truth.

In closing I'll suggest to mask-resistors that you call your grandpa and tell him you love him while he can still say it back because far to many people still defiantly refuse. This is all close to impossible to process, so people fallback on freedumb being violated. Me?! If I give it to my mom, I'll just blame my sister or Angela while a busy ICU nurse wearing a spacesuit holding a phone to my mom's ear, who can't speak because of the tube in her throat. That, or I can wear a mask and remain socially distant when I'm out and about... seems simple enough. Cancer is not OK; covid is not okay, nobody approves. Wearing a mask is not concurrence that covid is OK, or that you're weak or afraid. For people actually subscribing to the fallacy that this as a hoax with the ludicrous dismissal and unscientific theory that 'this will just disappear like magic by Maytember', perhaps concede that you're frightened too... all of the ramifications are a lot to unpack and process; short, near, and long term, life or death, employed or not.

So some unsolicited advise if I may: be like Madison through challenging times in your life: protect yourself and others avoid blame, find a sense of peace and even some joy in something and embrace that. Plan something fun, with a date TBD. Stay off CNN and FOX, and don't overthink anything to the point you're stewing in your juices, and take this seriously a day at a time, a week at a time, etc. Madison went through hell in 2014, and 2020 is no picnic for us mortal here on planet earth.

All that said nobody knows how many Madison's you may walk past in a store or restaurant, so I'll ask all of the Karen's politely: please put on your big-girl pants and wear a fucking mask.