5 Years Ago Today...
... Windi, Amanda, and Girl Scout Troop 60232 had a multi-family garage sale to help with our family travel expenses, which was featured in an August 22 local newspaper. Two days later we were on a plane to Boston for three more weeks of proton radiation ( <- pic of Madi) and another round of chemo. The levels of appreciation we have for everyone who helped are beyond words, which is why we're committed to pay it forward.
Today, hopefully the last project of 2019... a whole-house fan. It's hard to miss where we put the air intake as you walk in our front door :-)
Angela and I were at a friends pool party a few weeks ago and Angela was only asked once, and... how's Chris doing... really. It was from an out-of-towner we haven't seen since Madison passed. I've encouraged Angela to tell people directly to just ask me, or make something up telling people who ask 'he seems to be getting better... has almost stopped sleepwalking with a pacifier making bird sounds'. People were very reluctant to ask early on fearing they may hit a nerve; probably the same with mama-bear Colleen. She still picks Bailey up on Friday's after work, and drops her off on her way to work Mondays. A couple of Friday's ago Colleen called me on her way in to Target and asked me if we needed anything. Okay, who are you and what did you do with Colleen Jones? Needless to say, things are quite amicable. Rather than Bailey being alone during the day at her house, it's best for Bailey to be here with us and the three other pets.
As they most often do things continue to slowly level out after our loss, and I think it's getting easier on our friends who deeply love Madi too... hence the question mentioned above only happening once at the pool party. I believe things are leveling out for Colleen too. I find it interesting that I don't think or write about Madison in the past tense or use the word 'died', 'loved' (past tense) etc. We love her and she'll always be alive within us.
My quirky agitations at a park concert or casino are diminishing and I was actually in a bowling league this year. The prior season (2018) I'd pop by for a cocktail with our friends, but the loud bowling noises and highly-stimulating environment would slowly ratchet up my anxiety to the point when it's simply time for me to leave. One of the lessons I learned after a tragic loss was to always have an exit plan. Every place Angela and I went with friends, we drove separately but now I feel we're ready to even carpool.
I was sitting recently drinking coffee and looking at old pictures in my phone. I had already archived the gruesome post-surgery pictures, along with the alarming pics of tumor bulges on her ribs... not a lot of joy seeing those realities, which is why they're archived off, versus in my phone. I stumbled across an old treatment schedule which reflected all planned treatments from Dec 2013 to Nov 2014... back and forth to Boston, apartment rentals, Hope Lodge, Christopher's Haven, etc. Seeing that schedule prompted feelings of such immense gratitude to everyone who helped us financially and emotionally during our journey, and the lesson to just jump... and the net will be there. We did, it was, and we are incredibly grateful.
I titled this post Epilogue for a couple of reasons, but first I'll rewind back to January 2018. I obviously posted about Madison dismissing her mortal body at this link, and continued to write through the rest of January, link here. I still can't imagine closing this website because it seems to be something to me that connects her to us. What actually startled me was how many people reached out to thank me for continuing to post, and several hundred readers checking in weekly. There have been a lot of realities posted over the years, but I chose a passive site to share information/updates; one that wouldn't intrude with an email that this site was updated. If people choose to bookmark and follow along, great. If not, that's fine too... some people can't handle to much reality, which IMO is a form of self preservation. I still find it cathartic to write, and I'm not a fan of Facebook, Twitter, or any of the other mediums that people tend to post pics of their lunch.
Angela and I decided to pull the trigger and have new carpeting, interior doors, floor molding installed. It was either that, or go to Puerto Vallarta for a few weeks and come home to worn carpet that needed replacing. New carpet, who'd have thought how many triggers that generated? Given everything had to removed from all closet floors including Madison's bedroom, OMG... it's been a tough week proving once again that time does not heal all wounds. In our home-office closet I have every PET scan, MRI, CT, X-Ray on CDs... about 50 of them. I took a single notebook to every doctor appointment since 2013 up until the "this cancer will likely run it's course" discussion in September 2017 and then next, interviewing hospice providers. Madison and I are very analytical creatures. Together we listed questions to ask them and when we met, Madison wanted to ask the questions. In the back of the notebook I had pathology and genomics/DNA reports. I sat down for a while and thumbed through the notes I'd taken over the years, which included questions Madison asked the doctors with me being her scribe. There is no value keeping the notebook but had a hard time determining what to do with it. Given it brought on more funk than joy, I fed it to the shredder yesterday.
Next, going through many the personal belongings of Madison's in her bedroom closet, which brought some joy. I found her first photo album; some pictures below.
[Edited this paragraph] We're down to about 40 people checking this site weekly so in theory if (likely when) I finish the book, perhaps 40 book sales! Of course profit if any will go to the Chordoma Foundation. For the Hope Lodge and Christopher's Haven in Boston, the Cancer Support Community, Family House in San Francisco, Extreme Mobility Camps, we help however we can. I'm truly amazed at how much good is out there, and how lucky and blessed we were traveling during treatment.
Gypsy slept nightly with Madison like they were lovers. She actually has that pic in her album three times, the only duplicate photo. They do love each other (no past tense), and Gypsy was protective of Madison and her tennis ball for Madison to throw... for Gypsy. She was the best dog ever... of all of them. (don't tell Bailey or PJ)
Epilogue? The madisonrosefund URL came up for renewal. My plan was to drop the 'fund' part with a madisonrose URL but it turns out there's a porn actress who uses the name 'Madison Rose'. I didn't want to just let this site fade away so I renewed it. I do plan on using another URL, but TBD how to dump the contents over. The intent there is that if I do complete a book, I doubt it'll go to print/paper. An Amazon type e-book can have links to websites so I can make a lot of references pointing the 40ish readers there ;-)