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Yet Another Wow

7/26/2018

 
Breakfast with Frank on Sunday was very nice. We talked in a restaurant for 2 ½ hours, then took a walk down the street afterward. He’s a very wise man and was quite gracious with his time. We agreed that God does have a plan, and that tangible things happen for a reason, some intangible things too. If for example you jump off the Golden Gate Bridge, it’s not likely to end well. Did God plan Madi’s cancer or was sin a factor? Looking back to 2013: Madison had told me about an elderly women at a church she and her mom had attended. This blue-hair told Madison that sin was the cause for her disease suggesting her sins, or moms, or mine were real and we’re being punished. Needless to say that didn’t sit well, Madison was 18 then. She wasn’t angry like I was, but more frustrated that someone arrogantly projected her beliefs on to a young cancer patient (which pissed me off royally). I asked Madison how she responded… she hadn’t, was taken aback and they left. Madi made me promise not to intervene, but I had ideas! I suggested that she approach the woman at church the next week and drag her by the ear in to the pastor’s office "Tell him what you said to me". I also suggested a karate chop to the woman’s Adam’s apple, Eve would have wanted that. Mom and Madi ultimately changed churches, and love The Place and people there... they really are awesome! I mentioned the sinner story to Frank: He had a colorful response, apparently not a fan of that type of alleged sinnery. As we were walking back to our cars a white 2015 Camry did an illegal u-turn, I looked and took a double-take. Frank noticed me noticing and I said “that’s exactly like Madison’s car”. He said with a grin and said “oh you mean the Camry”. He’d read a post or two on this site.

Rewinding back to September 2017: I took leave of absence from work and played the role of the
Disneyland dad, home-care nurse which was an absolute privilege. In late December the company I worked at then had eliminated 450 positions locally including mine here in Cali, and opened as many new positions on the east coast. Nope, not going there. After Madi passed I’d be lying if I even tried to imply that I wasn't emotionally spent, needed to disconnect, decompress, to grieve, to travel and just be away, but most importantly to re-position Angela as the most important woman in my life. 

Do all things happen for a reason, was this part of His plan? The circumstances are oddly coincidental: my job officially ended two business days before Madison left us. Had I not been laid off, I would have certainly taken time away but would have probably rejoined my team after a month or two to complete the projects that I had in-flight. I'm still maneuvering through many scenario with those the question of the day. Frank told me that God has a plan for me now, and reminded me that His plan didn't include taking Madison away from all of us. Amen

So what's my role now on planet earth?! I was asked twice in the last week if I work, am retired, or?! Exactly, it’s a mystery! Wait, I know! I’m an unemployed volunteer. It’s time to sit at the grown-ups table and either grow a pair, get more tattoos and sport a man-bun, or get a haircut and rejoin the workforce. 'Hope' that we're financially able to retire absent logic, arithmetic, and common sense has been unsettling. I'm expecting two potential job offers in the coming weeks, which is equally unsettling. Yes, we can get by for now plus some plus some more...  (there’s a ‘but’ coming…): I don’t really don’t want to go back to work. I enjoy volunteering and want to travel and frolic with Angela. But! If I need to work a few more years, I’m more employable now than I would be down the road. So...

This week Angela and re-tuned our financial goals. We outlined them to a trusted financial planner and in parallel I created a ludicrously detailed spreadsheet to determine if my numbers would align with what she was crunching-up for us, measure twice and cut once. Angela and I met with our planner this morning and she opened with the meeting with “You guys don’t have to work anymore and your play-money goals will work, I'll show you the numbers.” Interesting… I was actually nervous on two levels. I let her know I’m expecting at least one job offer next week, maybe two, but she confidently replied “don’t take either one, go play” but added that if it’s fun work and I enjoy it more than travel, volunteering and playing, take it! Hmmm. Wait, another wow, I really can’t believe it, are we really there? This is the point in our lives when we can actually drop the microphone and say “bamm, I'm done working”, and actually plan on spending our kid’s inheritance… Madison did want that… she reminded me of it several times late last year saying “dad, you and Angela will need to take a lot of trips and go play.” I replied “Thanks Shug, I love you with all my being but not only are we going to spend your inheritance, I’m going to rape and pillage your college fund too”. Madison grinned broadly... she wanted us to be able to play. 

Not a day goes by that we don't think of Madison. While there is a spiritual puzzle in me but there are still some pieces missing. I'm not spiritually broken, far from it but certainly not anywhere close to having answers to my seemingly simple questions. Driving Madison's car because the Genesis keyfob battery died led me to Frank's radio program, then our long conversation about faith over breakfast, and a our walk together. Then a car exactly like Madison's makes a u-turn right in front of us and I have to ask myself if any of this coincidence? Madison was always such a smart-ass: was she behind any of this watching from above with a cheshire cat grin... is that even possible?! Perhaps this was part of His plan, or merely a sting of 
coincidences? 

(If this was you Shug, thanks, nice touch, I miss you too. Regardless I'm getting closer, and I know you wanted that) 


Another Wow

7/21/2018

 
Before the wow, looking back three weeks:  I met with a young woman and her mom for dinner. The young woman had recently been diagnosed with sacral (tailbone) chordoma and as anyone who has googled it, they were rocked to their cores. I’d spoken to the young woman on the phone a couple of times prior to meeting her and as you might expect we talked about faith, hope, and the reality. They live in a smaller city where cancer treatment isn't what it is in larger metropolitan areas. Given what she heard a local surgeon tell her, it sounded invasive, but doable. That’s hope, but I sensed a lack of faith in the surgeon. The mantra for guiding chordoma patients is simple: seek treatment by teams who treat it routinely. The reason we met for dinner; she and her mom had traveled in to Los Angeles to consult with chordoma experts in Los Angeles.
As I meet or speak with newly diagnosed patients, I feel I’m a skilled tap-dancer, diverting the subject away from being the chordoma-dad, and the ‘how’s your daughter now’ question. Apples and oranges, my daughter was treated for cervical, you’re not, and we can’t really compare how she is to your case, they’re all completely different depending upon sub-type, location, and other factors. That works 90% of the time and it truly is apples to oranges. 
We talked about the word faith. Tto most people it implies spiritual only beliefs, but to our family it’s been ever-evolving. Hope too is an extremely important factor in this equation. While this young woman had a lot of hope that her local surgeon would be successful and the proposed surgery would be less intrusive than she had hoped, she continued researching chordoma and seemed to lose faith in her local surgeon. While self-reportedly very skilled, the surgeon projected confidence but didn’t completely answer her direct questions. Hope is such a simple… well hope, but it’s not an action plan. Faith and prayer are requirements on realistic and spiritual levels, but to me one can’t pray for something that might have required some old-school logic... absolute faith in your your medical team. One may invest in hope that treatment locally will suffice, but absent faith in your team, you shouldn't really be too surprised at the end of the day if it doesn't turn out well. As we wrapped up dinner I let them know that friends and family may try and 'help' by suggesting that God has a plan and that all things happen for a reason... something cancer patients hear a lot. They had heard that already and it didn't seem sit to well with her mom, not because they're non-believers but it's confusing... at times it still is for me. My suggestion to them was to simply thank people, or come up with a brief response so you don't hear it again (and again) from the same person/people. 
​
So the wow: Yesterday I drove the Camry to run some errands. The only reason I drove it was because ‘the Genesis’ key-fob wasn’t working and I had sold ‘the Lexus’. I never changed the radio presets in the Camry, long story... it'd be like erasing what she liked. Anyway I’m driving along and there’s a radio station preset, 99.5 FM, so I pressed that button. I recognized the hosts name and voice from KLOS 20 years ago, Frank Sontag. He now hosts spiritual discussions and when I pressed the 99.5 button in the Camry, Frank was discussing  tragedy and cancer, and invited callers to phone-in if you have a single question. I called in with the simple question “do all things happen for a reason?” I briefly explained my question, we 
spoke on the air for a bit, Frank suggested a couple of online resources and invited me to email him directly. I emailed him and he responded quickly, and invited me to breakfast last Sunday morning. Wow, Madison would have wanted that!

A Thousand More Words

7/20/2018

 
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We received this in the mail today from someone we never met. Jamie is a professional artist commissioned to paint a portrait for us by my aunt and uncle. That in and of itself is an extraordinary gift, thank you and we love you Aunt Sara and Uncle Richard!!

We received the heavily reinforced box a couple of days ago and in it, the painting and a 'thank you' card. WOW!
I sat on the couch with and found myself staring at it. Jamie recreated so many Madison's expressions, truly incredible, a masterpiece we'll treasure forever.  Knowing my aunt had commissioned an artist, I called to thank her. Aunt Sara had been taken aback by Jamie. Despite agreeing on a price Jamie refused to accept any money. 
So wait, what?! A professional artist commissioned to paint a portrait waves off payment, and sends us a thank you card?! We are so touched and so thankful, thank you Jamie from the bottom of our hearts. 

Love,
​Chris and Madison's moms

Happy Independence Day

7/4/2018

 
Pool equipment is loud and ugly. This week I decided to build a replacement fence. Since the rear seats of "the Camry" fold forward, it only required two trips for all that lumber. Madi certainly wouldn't want me to have 15 eight foot boards sticking out of my sunroof for each trip. 
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Last week Madison's therapist called me to just check in, chat, and see how Angela and I are doing. We owe her so much for her wisdom, guidance, and teachings. We reminisced about different things and while she can't ever tell me details of discussions with Madison, she has taught me a lot too. I've quoted Madison's therapist numerous times about holding on to both faith and hope and ever-evolving variations of each. Reality will always be part of every scenario in our lives, but living with only a reality absent faith and hope can be a dark and lonely place. It's okay to visit, but don't stay there. Faith and hope! Ahh, but we can't ignore reality. I had faith in my extensive motorcycle riding experience and always hoped that some nitwit would wouldn't turn left in front of me because they think it's not dangerous to text and drive. Angela and I sold our motorcycles many years ago because I'd lost faith in other drivers here. Motorcycle riders always hope they'll always be seen, in our area have three realities. 1- you will crash. 2- you have crashed. 3- you will crash again and may need ongoing house -calls from hospice nurse extraordinaire Jan RN. And on that and...

...Amazingly out of the blue Jan sent me this text today, six months ago that Madison left us. Needless to say Madi left her mark on Jan too.  

My high school woodshop teacher taught two lessons that I'll never forget. "Measure twice and cut once" and "why is there never time to do it right but always time to do it over"? He was missing a finger. Ahh yes, her wheelchair: That thing is so heavy duty and infinately easier to use than a wheelbarrow. I tried selling it on Craigslist but none of the cheapskates there would take it for their $20 donation to Madison's favorite charity. Pondering... Madison maybe would want me to have it for it's ease of use and for the increased safety ;-). The offer stands: anyone who needs a wheelchair... all ya gotta do is donate 20 bucks to her favorite charity. 
​
Of course safety first! Power cords in the water... what can go wrong? 
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Since Madison's diagnosis in 2013 I had been invited to speak to couple of college psychology classes. The professor invited me to challenge the students who plan on becoming therapists. The presentation about my journey with Madi's cancer was about an hour long and I stopped several times and asked individuals at that part of the presentation, "what do you say to me"? I was surprised... lots of blank faces. "C'mon folks, how long have you been in psych... you sir in the blue shirt: my name is Chris, what's yours, and as your patient what do you say to me"? (I guess they had not yet got to the faith, hope, and reality lessons). One of my favorite lessons learned... acceptance is not agreement, this is not okay... it just is. They had not had that lesson yet either. The final iterations of hope were at home, pain and agitation free, and important to Madison that she was interactive during her final days and that her mortal passing didn't last for weeks. She passed on a Thursday, and we hung out Monday, Tuesday, and Wednesday watching TV, chatting, and napping while having slumber parties with us. 

I'm thinking about writing a book. It's all pretty much already written on this site. Madison had such wisdom and her soul was a beautiful song. She had such immense faith, wisdom, and optimistic while realistic insights. In this post I quoted her: "My hands are pried open to the dream I had for myself". That would be a good title for a book. Another gem of hers is "
The beauty of the light owes much of its existence to the darkness". The Beauty In The Light" would be good too. Pondering a title "What Do You Say To Me" would make it all about me... Madi would want that :-)  

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