Angela and I made the commitment to ourselves and close friends who lost their son Jason... their only child. Besides doing a bunch of other "I Got You" things benefiting less fortunate people on Jason's behalf, our friends Jan and Gregg also coordinated a blood drive in memory of their son, which was also a great success! That blood donation event was a poke in the ribs for me. I used to give blood several times a year and when Madison was at Kaiser Woodland Hills, I donated their twice. Lord knows she needed her share of blood and platelets. There's really no reason not to donate blood... unless you're too frail, like the elderly lady who went down; she fainted on the way out yesterday. That seemed to be an indicator of how things might go.
In these covid days, things move slower than the normal slow of the Red Cross. There was a line to get in to the Reagan Library (currently a blood donation site here in Simi), and of course six feet apart. Angela was in line behind a guy: they checked his temperature prior to checking him in. It was 102 degrees. Gulp. They rechecked and again, 102, so they told me to go outside. Yepper, I was the guy in front of Angela, and can't be in that building... really in any building. Angela came out wide-eyed, she had a high temperature too. Hmmm, neither of us felt poorly and the technician suggested we wait outside because maybe we heated up standing in the sun on the way in (which is why the tech isn't a nurse yet : ) The guy who was behind Angela was escorted out too, 102 degrees. The tech retrieved another thermometer and took my temp three times, each posting an E02 error. I offered my technical assistance suggesting that I know what the E02 error is. She looked up and said "really"? Yep, it's the one between E01 and E03. Thank God I was there! I saw a masked smile by the brief squint of her eyes. Either that, stinkeye... it's a thing. After tinkering around some more, she retrieved another thermometer and I was 98.2 and Angela was in the same range. A seemingly practiced and current political tactic... keep monkeying things around until you get the number you want.
As I sat up from my cot after filling my bag-o-blood, I saw Angela taking a picture of a Ronald Reagan portrait on the wall. Huh? I liked and admired Reagan, am a registered Republican... just currently disappointed in the party. I took a pic and zooming in, it appeared Angela was just watching some old-school clown porn.
The last time I donated blood, I donated on Jason's behalf. This time I was thinking about Madison. Since Angela couldn't get a spot with Jan and Gregg's blood drive, she donated on behalf of on Jason. We're proud and impressed with his parents, and Jason is the reason Angela and I will be giving blood every couple of months until we start fainting on the way out... ideally in to our 90s.
As I think I mentioned, I stumbled upon @Madirose_J on instagram... didn't remember having an account. What I saw was a treasure of pics with quotes I don't recall seeing. Weird isn't it; being the same age as old people?
I love the picture of Madi posing in the blue dress and have it framed during her pre-surgery #2 cruise. I don't recall seeing many of the Instagram posts, just pics... what a gift! The happy thing is when I stumble upon it in a couple of years, @Madirose_J may be new to me then too! Would that be re-gifting?!
You should be able to click an image below and see the full pictures with her keen and playful wit.
On August 24, 2013 Madison had surgery for a very benign looking 'mass', 'lesion', a 'growth'. Her surgeon remains the Boss, at the top of his game. He's the surgeon who operates on other surgeons and their family members. While he's that good, he simply didn't know what he didn't know about chordoma. Fun Facts: Madison's surgeon in LA did spinal surgery on the father of the Chief of Orthopedic surgery at USC, and at a different Hospital. Huh! One of Madison's surgeons in Boston did the first successful penis transplant in the USA, and he's also one of the globally recognized chordoma experts, Dr Cetrulo. When he ask Madison which leg to use to sacrifice for a bone graft, I said "That one", pointing to Colleen's shin. When I'd read about Dr Cetrulo's success, I don't think it was deemed as a success by only just a thumbs-up pictured here.
We don't know what we don't know about covid, except that wearing a mask or not shouldn't be a political statement of who you do or don't support. Thank you in advance for wearing a mask when you're in indoor spaces and close to others. We cannot afford to hope, and to speculate what we think we know all about... what we don't yet know enough about... covid.
Seven years ago today Madison's mom's and I saw Madi on a ventilator.
... "Oh My God"
Madison's dog Bailey, cute as a button pictured below in November 2014, the OMG coming.
Everyone gets their fair share of junk mail; to be determined if there will be en Executive Order from the WH to eliminate zip codes.
I checked the mail yesterday, tossed the stack on my desk for another day... which is today. Pictured below, one of them caught my eye, pictured below.
I don't recall ever ordering from them, but okay... worth a second look, then a third, and then what Angela said to me when I showed her... "Oh My God"
Last week I stumbled on something I hadn't seen in years; many of Madison's Insta-gram pictures I don't recall ever seeing. This gem in her feed from October 2016... she wrote that it would be her only political post. If you haven't looked at madirose _ j (no spaces, so @madirose_j), you'll see some real treasures showcasing her bravery given what she was going through... while never losing her keen wit and wicked sense of humor.
I love you and miss you too... every day Mad-dawg, and thanks for the card.
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.
I've written three full drafts since I've last posted, but given the levels of health and social turbulence I've not pressed the 'publish' icon... none of what I'd drafted felt relevant.
Today Madison is supposed to be 25, but to me... to many of us, Madi is forever 22.
Madison's cousin Hannah updated her Facebook background picture on Dec 26, 2014. It popped up in my 'newsfeed' (current) that it was '4 hrs ago' on May 6, just two weeks ago as 'new news'. Front and center, Madison Jones and 8 others 'liked' it. How could it possibly be new news?! (psssst, answer below)
Hannah loves you too Madison, and we all miss you. Nice touch having that 6 year old post pop up recently as new FB news, and kind of hard to dismiss that fact that your name was front and center! I can't bring myself to say 'Happy Birthday' to what should have been... age 25 and all, but Angela and I sat out back this morning talking about you.
May 20th will just be another special day we celebrate you.
Last month I was preparing to scratch/format Madison's computer hard drive, I did a once-over... did I miss anything?! A letter in italics below was on her computer. In late 2017 she suggested that I should write down all of her various passwords. Knowing the computer geek I am, she likely suspected I'd find the MS Word doc pasted below while trusting I wouldn't open non-applicable files related to past future ex-boyfriends. I read this last week for the only the second time since we lost her, and needless to say it an emotional moment. What a beautiful gift from a beautiful soul.
"What do you say after twenty-two years together? I can’t fathom where to begin. I’ve said it once and I’ll say it again, you were the first man I ever loved and you’ll be the last man on this side of Heaven that I love as I do. How I love you, Dad. Thank you for loving me.
I remember when I was little I would hold up my little arms and tell you “I love you this big” and you would smile at me and hold up your significantly longer arms and tell me you loved me more. Oh I thought I knew, but I really didn’t ;)
Throughout my life you have given me so much: a home, a provider, a driving buddy, a teacher, a listener, a friend, a forgiver, security, and so much more. You were an amazing dad. I tested you and made mistakes, but you loved me unconditionally, always unconditionally. You cheered me on.
And then we were hit with the curve ball of a century four years ago: Chordoma. These past few years, you’ve helped save my life. You searched for the best when it seemed like every road block was in our way. You relentlessly persevered; never giving up no matter what the medical teams (Kaiser) tried pushing us into. You always found a way to get me what I needed and you found me the best and you wouldn’t settle for anything less. We may have been scared shitless, but you made the journey so much simpler for us all.
Big love is when he nearly cries with joy because you haven’t pooped in a week , but because his kid finally has some relief. That is big, real love, and I’m thankful for him. There’s another bed in my room, next to my new hospital bed, where he sleeps to make sure I’m okay. He wakes up at 3:30 am to make sure I don’t wake up with pain. He sacrifices as if it is a privilege and, to him, it is. He’s loved me liked this ever since I was born.
You were the first man I ever loved, Dad, and you’ll be the last man on this side of Heaven that I love as I do.
Rewind back to April 2014: we were in Boston and things felt like they were falling in to place. Madison was having five weeks of Proton Beam radiation at MGH, pics here. She and her future then BF, Angela and I were at the 2014 season opening game for the Red Sox, the 2013 World Champions. A song played that typically gets everyone singing, link here. About 10 seconds into the video I just now noticed something despite having seen the video dozens of times: that guy pointed and was singing to Madison, who was just singing along with Rodger, who was singing along with another 50,000 people. About 15 seconds in, you'll see Angela in a Boston beanie.
Angela and I were in a restaurant last week in Puerto Vallarta a local band was playing typical Mexican music... and then it happen. Really, Sweat Caroline?! Yep, video here. I have very fond memories of that song. The first time, we were invited in watch the game in a Corporate Suite at Fenway Park. Sweet! To be honest, Madison was invited by the host of the Hope Lodge Fundraiser we fell in to, and Madison graciously brought us.
So I haven't yet formatted Madison's hard drive. I'll give Colleen another opportunity to have Madi's computer. It's Windows 8 old, tired, and basically worthless. While I'm confident I have all of the pics off of it and have kept my promise to Madi... that will never read any 'dear Rodger' documents. It's still such a tough thing to do; actually erasing Madison's computer. It was easy getting rid of her Camry, so much less personal than the only computer she ever had.
Angela went to get cat food and some other items yesterday, came home with this bucket. She's seen the picture of the men's urinal at Babel's in PV; hard to say what she's thinking will happen to this. I certainly have my vision, which I'm certain are different that hers.
So life goes on and hopefully we're all giving, living, and loving the way Madison would want us to in her physical absence. I doubt she would have authorized an outdoor pisser but we'll see where this goes :-)
So with the conoravirus issues ramping up, I'll share a picture. Angela and I returned home yesterday after being in Puerto Vallarta for 15 days. Upon check-out, there was a full busload of Asian tourists in the lobby of our hotel. Okay, not jumping conclusions but I decided to snap a quick pic of Angela awaiting our transportation to the airport. This caught me a tad off guard. I figured out who the tour guide was, and decided a friendly chat was in order. I causally asked the tour guide where the group was from, where to next, and he confirmed they're mostly Chinese from a cruise ship. Ruh Roe.
Angela taught me to always save the best part of any vacation for the last, so working our way backwards, we had a great beachfront room the last four days. Full oceanfront with another sliding glass door to the north. Suite!
We'd committed to our friends Gabe and Tony to 'live as locals' and popped down to PV to dig-sit 'Ricky Martin' while they take a cruise. Ricky pouted for less that a day, then accepted us as his new peeps. Tony and Gabe's apartment while very rural, was beautiful.
It actually felt quite safe being adjacent to Gringo Gulch. Prior to staying in their apartment we booked a hotel that had great online brochure photos, was 1/2 a block from Gabe and Tony's for our series of new dog-sitting orientations, and was basic even by Mexico standards.
Like this whole series of posts, we start with the end at the top. Our first hotel was considered a budget bargain. If you can sit on the bed and your butt hits the plywood under the mattress, you're home! Shampoo or soap... naw..., we had toilet paper. Besides, free parking!
Bottom line: while seemingly unorchestrated, Puerto Vallarta just seems to work. We were all over the place, and only saw two traffic lights, and both had the stoplight on the left side of the street. A guy with an infant on a motorcycle... what can go wong?
As mentioned the tour guide (top of this post) confirmed his tourists were primarily Chinese, and when I asked where-to next, back to the cruise ship, then back to Los Angeles. Phew!
Our favorite breakfast place was very close to Gabe and Tony's, a one minute walk. They have great food and have live music daily from 1-3 PM. It's very picturesque, right beside a river that seemed to have an endless supply of water. Also a nice cool breeze sitting there.
I'd posted a picture of their urinal a couple of years ago: while it's several shades darker, I'm STILL impressed... and I think every backyard needs one!
Two years ago today we lost Madison. As mentioned here, it was a very graceful exit from planet earth. While today marks two years and I do feel that sense of sadness that will never likely go away, I feel especially proud of her today... far more pride than sadness.
In the 'Fun Fact' post below I'd written about cleaning up the inbox on my old PC so I wouldn't start anew with old email clutter on my new pre-owned PC. Needless to say, I'm not deleting anything from Madison... not sure I ever will. Now this is where it gets wonky. At first I was taken aback. After I absorbed it I was knocked on my ass, here's why. On New Years day I was looking at email on my phone and there was the normal email stuff above and below what you'll see in the screen-print below.
My email inbox is sorted newest (email) at the top. On January 1st there were about 20 emails from Madison, most of which were just pictures without a subject line, again... inserted in a clump in my date-sorted email. In this screen print, the top one is dated 2016 and the bottom from 2015. Not sorted by subject line, not by date, just about 20 emails clumped together spanning 14 months, so not sorted by date, not by subject or lack of, and like that in my phone. Needless to say I opened a few. I still have them all in a folder in my email on my PC, but date sorted. I showed my phone to Angela and said "will you look at this!" Stuffed in the middle of my new and older emails were 20+ emails from Madison from 2015 and 2016. Angela said "ahhh, she's telling you happy new year."
Thanks Shug, nice touch, very well done!!! I love you too, we all do and miss we you immensely, so let's sync up again soon. Yes, I promise to try and 'Be Best'.