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'.
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'.
I've tolerated my 9 year old laptop long enough. Madison's is decent but like the Toyota, it's her's. Before I wipe the data from her disk, I'll backup up all of the data and pictures. Given I'm basically a tightwad, I was hunting for a killer deal on Craigslist. While there are killer year-end sales on PCs, I don't want to buy new figuring a lot of people must have the latest and greatest. I found a very new-ish 2019 laptop that has MS Office, and SSD, and a gen-9 CPU. Sold! Rather than cluttering my new laptop with old rubbish and old emails, that was my quest. I guess I'm a data hoarder. I had every CT, MRI, x-ray, PET scan, reports, etc. from Madison's diagnosis. Time to delete that whole folder, then on to email. I have every email from every doctor, nurse, PA, etc in another folder.
While cleansing my old emails a name came up, Curtis Cetrulo: I remember the meeting with him. Dr Cetrulo in B ostonwas the surgeon who would cut a chunk out of Madison's fibula along with arteries for the bone graft in in her neck. He patiently explained the procedure to Madison, Colleen and me and even drew it on a whiteboard. When Dr Cetrulo asked Madison which leg he should consider for the donor, I spoke up and said "That One" pointing at Colleen's leg. As Madison would say Anywho.... the fun fact: In 2016 Dr Cetrulo was the first surgeon USA to successfully transplant a penis, link here.
Happy New Year everyone who checks in here. A book in 2020 our way comes.
It's been a while since I updated this. As Madison had noted, it's cathartic to write for me too.
I closed the last post about the Conejo Valley Village, the local neighbors-helping-neighbors nonprofit chapter. Angela and I were so impressed that we got more involved. I help out with their newsletters and we're both 'Call Managers', logging transportation requests, coordinating rides for members by volunteers, and miscellaneous other things. During our training, the trainer answered calls on her speaker phone and logged them in to their computer system. An very elderly woman called and said her "computer was making noise, I think it's the battery." Sensing the woman's advanced age Angela said m'mam, where did you buy your PC". Her response, "Best Buy". Angela instructed the 94 year old woman to call Best Buy and tell them "shame on you, you're too freaking old to use a computer" and insist on a full refund. I asked the trainer at what point do we ask volunteers to debug computer issues as Geek Squad. The trainer explained that very elderly people are not only vulnerable to being scammed, they fear it a lot having limited financial means. The Village would send a volunteer over to simply listen to the woman's computer and confirm it's the computer, and not her fridge or her hamster cage. The volunteer would help coordinate an appropriate service provider, and be there when the repair person came. Wow, I get it.
Angela and I had camping reservations at Carpinteria beach Tuesday October 8, planning to return home on Friday the 11th. Shame, it was absolutely windless but we had tickets Friday night to see Frankie Valli and a Four Seasons concert with a hotel reservation in Solvang, but obviously couldn't leave the dogs in the RV for that many hours or we forego (or past tense, would it be forewent?) staying at the hotel in Solvang. Madison's mom Colleen graciously fed our cats while we were camping (our neighbor who often does it was in Hawaii), so we thought with the mobile beach house (RV) being all set up literally backed up over the sand with firewood, bicycles, etc., we offered it to Colleen and her husband Michael for Friday-Sunday, which they jumped at.
Oddly enough, Angela and I take pictures of our feet whilst off the grid and disconnected. Interesting, Colleen does too.
All kidding aside and all things considered, Madi's moms and I have a unique and special bond. Collen doesn't hesitate to do anything to help us, and we'd reciprocate at every opportunity. Looking back, a chordoma expert had recommended old-school chemotherapy: they had data on five cases with Madison's 1 in 20M subtype, which in 2013 was 50/50 in it's effectiveness with data on only five patients. Given Madison's case among others has formally been studied and since has been included in peer reviewed papers by other chordoma experts, it helped tilt the scales such that while chemo has proven mostly ineffective for classic/traditional chordoma, it's proven mostly effective for poorly differentiated chordoma and recently become a standard protocol. In Boston in 2013 after Colleen, Madison and I met with the experts in Boston who suggested chemo, Colleen was frantically searching Google for the side effects of the proposed chemo treatments. I suggested going for a walk and Colleen barked "I'm trying to save our daughters life". I'll never forget: Madison said to her mom "Dad and I are going downstairs for ice cream, wanta come?" I can't even imagine a mother's biological instinct/anguish being positioned in such a scenario. Men are from Mars: I was thinking mathematical probabilities, and Madison just wanted to step away from cancer for a scoop or two. Lesson learned, take a time-out and stay off of Google.
Forwarding back to 2019: Angela and I were watching an LA Ink (tattoo show on TV) about a month ago. Seeing all of the body art, I asked Angela where her next tattoo might be. Angela responded without hesitating saying that it'd be something related to Madison. Watching radical examples of tattoos on LA Ink, her response caught be off guard: it was clear to me who she was thinking about in that moment. Perhaps it's time for moms and me to get the same thing, like Marleigh and Madison's Nurse Jan RN did.
So, back to camping! Colleen and Michael spent the night Friday in the RV and were ready to bail the next day. After a nice breakfast in Solvang with friends, we dropped down to Carpinteria. Michael and Colleen had packed up they may just not be 'campers' or perhaps too many memories of with pictures of Madison loving Carpinteria... this was Colleen's first time there since we lost Madison. No matter the reason, they were ready to turn over the RV. Before coming up to the RV, Colleen stopped by the house and had taken pictures of our backyard given the extreme winds in Simi. Angela missing the cats decided to go home as well. Hmmm. My options were closing my eyes as Madison taught me working with blind kids and staying in paradise focus only on absorbing the scents and the sounds of my surroundings, or go home and pulling the outdoor cushions and patio umbrellas out of the pool. I chose option A, and Angela chose option B. I could have easily spent a month of-the-grid month camping in Carp, but acknowledge that I'm not a Venetian attached to our cats. Besides, someone had to go home to pull the umbrellas and outdoor chair cushions out of the pool : - )
Angela now has her actual smartphone since she was in corporate America, a modern iPhone to support the Village. She loves it, but given we registered it under my iTunes account, every contact and more that Madison had were imported in to Angela's new phone; an Apple ID that Madison and I shared. An unanticipated but predictable ouch, consistent with the 'Memories" that Facebook reminds us as 'anniversaries'. It feels strange that my phone and Facebook no longer consider/assign Madison as a 'frequent contact'. I can't fathom removing Madison as a 'contact' in my cell phone, or even my email address book. I'd wager that many of you have thought the same... and haven't deleted her contact info.
Halloween 2019: Our friends the Burow family hosted their10th annual pumpkin chuck. It started with a potluck where everyone brought decorated pumpkins back in 2009, but when Dale tossed Maria's pumpkin over the balcony it became a tradition... they all go with scores for accuracy and the creators receive prizes. Back in 2009 Maria was aghast and actually seemed angry saying repeatedly "you have no right". Then, the rest of the pumpkins went over and it evolved in to prizes for with diffeernt categories.
Facebook recently popped up with a memory with Angela. In 2000, it was cool to tuck tropical shirts in to your slacks. I was voted Mr. Poreao 2000 on a cruise I was on and won a very expensive bottle of champagne. To be honest, I was the only male who dressed up and there was a prize for a man and a woman. I can't easily find the picture of my limited attire for the contest that Angela said 'oh hell no but lemme take a pic', but will post it if/when I find it.
Our friends Tony and Gabe in Puerto Vallarta are taking a long cruise and Angela and I have agreed (well... jumped at the opportunity) to dog-sit living there as locals. We're also watching the pricing drop on a seven day cruise, and may cruise down cutting it off at five days foregoing the Vallarta to LA leg, and stay another week. Lesson learned... we all need something fun to look forward to, #fun.
Life goes on for moms and me: we allow ourselves to mourn and play/live while noticing the subtleties of who we're not often social-media reminded of, 'frequent' contacts on our phones, but we're actually very comfortable saying and hearing Madison's name. In hindsight we should have taken Madison's ashes camping last month, which would have been a first. Me being alone in paradise for the last 36 hours I was there, the ocean seemed to be baiting me to play Hawaiian music and walk Madison's ashes in to the ocean. It's good I didn't bring her ashes. They hang out in her bedroom in an XMO backpack and every day I open her bedroom curtains and say 'g'morning Shug', and every night I close her curtains, say g'night, and pat her ashes.
Perhaps for her quarter-century birthday that was ripped away from her, a celebration in Carpinteria and consider leaving her ashes there. Looking back to last month, I feel it would have been extremely selfish for me alone. Carp was one of Madi's favorite places of all time! I fondly remember her telling us that she's going to be a marine biologist, working in Carpinteria. 10+ years later, she was seriously flirting with the idea of getting her own VW van, and going to Carp alone.
Yea... let's do it. May 20, 2020.
Reflecting back to a lesson-learned, jump and the net will be there. When it was determined that Boston was the best place to treat Madison's rarest of the rare disease, I'd be lying if I didn't say it was financially daunting. Just that first trip was five round-trip tickets, and 9 weeks lodging. The five travelers, myself, Step-mum Angela, mother hen Colleen, Madison, and her BF Rodger. Angela and I rented a 2BR apartment and got a great rate since it was specific for handicapped people, which sucked for us being tall. Since everything was for wheelchair accessible people, no overhead cabinets for water glasses and everything down low, which we are not. We had that for six weeks I could work remotely from Boston. Mama Colleen could only take three weeks from work that stint, so she came staying in a different apartment. The reason Angela and I and rented a 2BR was a separate place for me to work, and while Colleen and I talked about sharing that apartment, it might have ended up like a Columbo mystery of the week. Most importantly, a bedroom for Madison that we thought after time, she wouldn't want to use. Here's why.
We were very lucky and blessed on so many levels. After being on a wait-list, the Hope Lodge called saying they had a room available for the whole six weeks. Madison wasn't at all keen on it but the cost was zero. When my friend Jan finally convinced me that I was a stubborn ass for not asking for help because people frantically wanted to, I thought this may work. So the plan: Angela and I get an apartment across the street from the Hospital, Colleen another apartment, and I felt what would be best for Madison was to give the Hope Lodge an honest try. I stayed overnight with her in the tiny suite (one of 40) for the first few nights. Rodger flew in and Madison was a little more amiable to trying it some more. The easiest thing would have been to simply have Madi and Rodger have the second bedroom in our apartment. Radiation treatments only lasted 15 minutes per day, so the rest of the time would be staying with Angela and me? The Hope Lodge was the first experience I had that opened my eyes to how truly good people can be, I'd touched on that here. Angela volunteered there, pictured in that link. Madison summed it up nicely once she'd settled in to the Hope Lodge. We were at a fundraiser for the Hope Lodge and someone asked her what made it special. Madison said everyone there had traveled to Boston for cancer treatment, but people want to get to know each other.. cancer mostly not talked about was is just something they all had in common.
Every week day, Madison and Rodger would take the 30 minute shuttle ride to MGH for treatment, and then come across the street to hang with us, or visit with her mom, walk to the Commons or just explore the area. Every evening knowing they had a bedroom then and there, they still took the two trains required to get back to the Hope Lodge. Madison found her peeps, and Rodger by nature is a social butterfly. Early on, scared newbies trickled in early in their journey to Boston. The tribal elders who had been there a while embraced them and soon enough, Madison was a tribal elder. Let's face it, cancer isn't supposed to impact children much less young adults. Hope Lodge didn't allow minors to stay there so every guest and caregiver was much older than their youngest possible guest. Angela, mom and I would take the train out and hang there a few days a week and that's when I saw pure kindness in people. If you haven't clicked the link above, here it is again and it'll make more sense. People helping people expecting nothing in return. Interesting. Not only was I "Madi's dad" at XMO, I was Madison's dad at the Hope Lodge too. Other guests (patients and caregivers) there were SO impressed that this hairless young woman faces her treatments so bravely and matter-of-factly. I was pulled aside be a couple of people who learned that I was her dad, and told me how she inspired them.
Madison's mom's and my collective purpose then was finding the best possible treatments wherever they may be, and jumping... the net would be there. The level of gratitude we have cannot be properly expressed in mere words for the people who helped us financially, but also for the volunteers and businesses that did so much, expecting absolutely nothing in return. So fast forward to 2018:
I'm pot-committed to the Chordoma Foundation and Chair their Community Advisory Board. I also co-moderate a chordoma support group with >2,300 chordoma patients, spouses-of, or parents of kids with chordoma. We're in 83 countries and get about 3-5 newbies a week. Someone newly diagnosed is frightened out of their wits because they did the same thing everyone does when they hear the word 'chordoma'... they Google it. Incorrect! There's a lot of old stuff on the internet. We point them to our cookbook called 'Getting Started', and send links to everything they need to know about chordoma, vetted doctors, FAQs, and a wealth of other current information that is all in one place, the Chordoma Foundation.
In 2013 I was shepherded in to the group as a terrified newbie and I spoke with a woman named Ann in Canada, who I'll never forget. Ever. She was a tribal elder then and we spoke on the phone for about an hour. In the beginning of the conversation everything felt like it was falling apart. Towards the end, it felt like things could actually fall in to place. Jump, and the new will be there. The group is absolutely amazing. As Sharon (the other moderator) and I admit and introduce new members, there are typically 15-20 welcome messages the first day from other chordoma patients/survivors or parents from all over the world. I'm very proud of the group! They welcome newbies with open arms, share their tribal wisdom and experiences, answer questions, and many people offer to talk over the phone or meet for coffee at times.
So there are a couple of purposes, another was determining if/how I can help the Conejo Valley Village, a local non-profit. I stuck my toe in the water, you can read about it in their April 2019 newsletter, link here. I can't believe how many outstanding human beings there are, just neighbors helping neighbors.
About two years ago my mom stopped calling me for rides to doctors, Costco, the vet with her dog, grocery shopping, etc. I'll tell you, people in their 80s see a lot of different doctors... and often, quite amazing. Hmmm, she stopped asking for rides, she lives alone (by her choice), and isn't asking for help. What goes? Granted I was relieved that I wasn't the designated chauffeur or in charge of throwing un-distinguishable grey-matter out from her fridge, but I suddenly became very leery when she told me new neighbors popped up that to help, a husband and wife named Carr and Deb. While there is pure kindness in the world, there is evil too. Now then! People she just met driving my mom all over, helping organize my her mail, taking her grocery shopping, to Costco, dog to the vet... I smelled a rat, two in fact. Who are these these do-gooders who popped in to my mom's world and weaseled their way in to her good graces? I gotta tell ya something you already know: Phone and email scams specifically target our elderly, whether someone calling saying their Social Security account will be frozen or any one of a dozen email or phone scams, seniors living alone are at real risk and I know of two who had fallen for the same scam. It cost one of them $5,000. The other actually other went to her bank to get $5,000 in cash. The teller asked why, and Carolyn explained that her grandson had been arrested and the field jail can't process credit cards and won't take checks. The fake police used her grandson's Facebook page to see what festival he was at, figured out who his grandmother on Facebook, then found her phone number. Sneaky bastards, telling Carolyn her grandson and using his name was at a festival... arrested for drunk-in-public, and he didn't want to infuriate his dad by calling him to pay the fine.
Elderly are especially vulnerable targets. Regarding my mom... trust but verify. I did, and couldn't freaking believe it. The net of what I discovered is in the Village April newsletter, link above. I hadn't witnessed this type of purity in volunteers until we were at the Hope Lodge, and I was 55. Look who's all grown up! I saw it again at Christopher's Haven, and again at the Family house in SF. They're all there bringing in companies who donate meals and services to ensure patient's who must travel for treatment have the best scenario possible available, at little to no cost.
Seniors living alone actually seem to retain most of their marbles, but judgement can diminish over time (along with their filters :-)
We all know September 11, 2001 to be one we’ll never forget, burned forever in to our brains, where we were at and the absolute shock and disbelief we felt when we heard the news about the terrorist attacks.
Rewinding back to August 2013, Madison required emergency because two vertebra in her neck were severely compromised and had collapsed in to her spinal cord. Before surgery, we validated her surgeon’s expertise and yes, he’s the perfect person at the top of his game. He mentioned three words, a very friendly looking mass, growth and lesion but never said tumor or the potential of. When asked, he reiterated that it’s very harmless looking, has seen it quite a few exactly like hers and had no concerns whatsoever confidently closing that he’ll send it to pathology to confirm after surgery, more of a formality which was on August 23, 2013.
On Sept 10, 2013 Madison and I went to the doctors because pathology results were in. The result, Chondroma, a benign cartilaginous tumor. #benign, non-cancerous, whoop whoop! All of the relief, joy, renewed spiritual faith, and relief that Madison can get on with college and her life.
The following day, Madison was at her mom’s house, home alone for the first time since surgery. I was at business lunch with vendors and colleagues when Madison called, right after her primary care physician called her and told her it’s not chondroma, its actually chordoma, so she’ll need to see an oncologist. Stuck at lunch, I spent about 30 minutes outside of the restaurant taking to Madison telling her what most people do when they find out a friend or family member would say to help, that science and treatments are continuously evolving, cancer these days is very survivable, etc. After my ride back to the office and my car, I joined Madison and Colleen, who had just arrived too and off to the doctors again for a polite but direct WTF conversation, which is it… chondroma or chordoma? My gut tells me it was a brane-fart: the doctor's brain saw the word chordoma but incorrectly translated it in her head to Chondroma, something infinitely less rare that she’d seen before, but it wasn’t chondroma. Damn. This is one of my September 11 reminders... hearing the word chordoma, then Googling it on 9/11/2013. Oh my God, how can this be... how can this be, why her Lord, why not her mom instead.
Kidding aside, mom's and I have met a lot of cancer parents. Everyone would forfeit everything for it to be us, and not our kid. My next non-9/11 September 11 memory was 2014 in Boston. On that day Madison received her last radiation treatment wrapping up eight weeks of IMRT and proton treatments, and that after enduring two more gnarly surgeries and five rounds of chemo. I took this subway pic from my train-station in Boston… Finally, light at the end of the tunnel, Madison ringing the bell at MGH in Boston. Only three more chemo treatments and we’re done. (oh yea, we who dad : - )
September 2015 sucked too. Madison’s neck had a bone graft which had fused remarkably well. The good news, there was far less risk of hardware breaking but the bad news, a plate was visible when she opened her mouth wide. Damn. I was confident I could get the top screw securing the plate out, but none of the others. Another hellacious surgery required, damn. By request, the surgeon in 2015 kept the plate for me. I have it on my key ring, along with a small cross from Madison’s.
Disease free for two years, then an ugly metastasis. Damn. We already had a plan-B given guidance from the Chordoma Foundation and MGH, so all of the trips to San Francisco and while magic for six months, suddenly stopped working. We went to plan-C, but that proved ineffective. After three inclusive what-next discussions with experts, I met with an oncologist who reviewed her case from beginning to current, including the DNA sequencing of her tumor. He said something I think we knew but didn’t say, he asked “has anyone had the discussion with you that this advanced disease will likely run its course?” Madison’s question, “what percent chance do you feel chemo might help, and would it be curative or just life-extending?” He said maybe a 5% chance chemo might work giving the DNA make-up... it might slow the progression but wouldn't be curative. Damn. Acceptance is not concurrence. This is not OK, it just is. I’ll never forget that moment, forever burned in my mind. Madison said “dad, I don’t want to die from chemo as a chemo patient… let’s go home. That was September 11, 2017. Two weeks later, a grand celebration of her life, link here, and living and loving large as long as possible. She did.
Madison, mom's and I have seen the reflections of emotions in eyes of everyone who loves us and loves Madison, a love that won't ever have an epilogue or ending.
We all have our days, but my memories are mostly of my immense pride, how much she taught me, and not fear mortal death. I think she taught others by example with unspoken words beyond 'I love you', Madison just staying Madison. That last oncologist didn't imply that cancer may 'win', but 'will likely run it's course'. I'd written before that Madison made me promise that I'll never say that cancer took her, that she lost her battle, etc. That would imply giving up or that she's the loser, or perhaps didn't 'fight' hard enough. Incorrect. On September 11, 2017 Madison was basically handed a death sentence in that moment. Madison saying "c'mon dad, let's go home" to me in that moment was her deciding instead it's a life sentence, and she lived it blowing through physical barriers and challenges despite the chaos going on alone her spine, ribs, and lung.
I have a love/hate relationship with September elevens. Justifiably it's a day we'll never forget, but 9/11 being an annual media event obviously reminds me via TV and news of that day and our 9/11's.
... 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 ;-)
Our home was built in 1964 and among other legacy traits, it had plain and hollow bedroom and closet doors. Angela and I decided to upgrade them, which obviously includes Madison's bedroom door. Since there's been no real reason to shut her door from the inside, I noticed something I'd seen many times on the back... but forgot it was there. A picture of her words, worth a thousand of them.
The ridiculously inexpensive cruise was very nice. Watching the last-minute deals, I noticed that Princess had dropped their last-minute-sailing price to $99 per person for a three day cruise from L.A. to Vancouver. I spoke with Angela, who seemed to have little interest in going. But wait! Three days, includes meals and we can explore Canada for a few days after that. She reminded me that it’ll be rainy and she’s already not a fan of Vancouver weather that time of the year. A few days later Princess dropped the price to $87 per person, and a few days after that $54. Given Angela had just returned from Princeton after 10 days, she suggested I go, so add-to-cart! It turns out that I’m a bit of a snob and won’t do anything less than a balcony. The rate was $129 per person for three days, so my cost was only $258 for a balcony cabin.Sweet! Mind you I'm not captain funbucks, far from it but $86 a day for a floating hotel room with a balcony, meals, shows, and all of the other perks included is a great value.
I chose not to watch any TV, so no CNN, no Fox, no email, no social media whatsoever and I loved that they had live music in so many corners of the ship. There was a waaaaay-to-drunk woman on the ship who looked like ‘Mama’ on the Carol Burnett show. After telling me all about hers, she asked me if I had kids, grandkids and I replied a simple “no”. She pushed more saying “you’ve never had any kids, none… I don’t believe it”. I said no, she pushed me again, and I explained that if she asked me again she’d feel really bad and guilty for asking. She asked again. While a sad ending, Madison was a beautiful song that will play in my heart forever. I can talk about her forever, explain the levels of pride and love, but those typically bounce off of sad faces. I don’t openly socialize Madison’s story or scenario to strangers because of the fact that more times than not, people feel horrible with the thought of how they’d feel if they lost a child. It was interesting being perceived in the age range of having grand-kids, but then again "Mama" bought the beverage plan with her partner in crime: they were both drunk by noon, and blotto by nighttime, maxing out their 15 drinks daily included with their plan. Had they been sober, I probably would have been perceived as a parent, versus a grandparent... so let's go with that.
As the ship approached Vancouver a beautiful sunrise!
The majority of the ships passengers were Canadian. Most whom I became acquainted with suggested the ferry to Victoria instead of spending three days in Vancouver. For less than $20 total, I took a train to a bus to the ferry to another bus, and finally arrived in Victoria. While the scenery on the ferry was very pretty, it was mostly the same… for three hours, which excluded the train and buses. I didn’t book any hotel in advance figuring I’d find an area I liked, and just wander in to one: I learned several years ago that hotels would rather get some money for a room versus having it empty. The scenery in Victoria was spectacular, I took long walks, wandered through their parliament building, museums, and really enjoyed myself.
Rather than ferrying to back to Vancouver, I opted for a seaplane, only a 30 minute ride, versus bus, ferry, bus, train, then Uber. Considering the amount of time that would have taken, the seaplane was another solid value. The afternoon before my flight left from there, I met-up with my sister from another mister Maureen, and her husband Scott. Maureen and I have spoken on the phone a dozen times and have exchanged dozens of emails and messages, but never met in person. Maureen and Scott speak annually at a University in Vancouver to graduating classes of palliative care professionals. Unfortunately they’re very well versed… they lost their daughter Angela to chordoma; Angela being their only child. I’m so impressed with their tenacity and willingness to speak to the graduating classes... they continue to pay-it-forward. They’re invited back annually and make the trek in (3-4 hours of trains, planes, and automobiles) and coincidentally were in Vancouver the only full day I was there. Hmmmm… maybe some things actually do happen for a reason.
I spend my last day exploring Vancouver, found a really nice water-front park, did some light shopping, and a ton of walking.
Early this month I traveled to Chicago for the Chordoma Foundation Community Conference. It was great seeing old friends and meeting new ones. I flew in a day early and spent Friday exploring, went to a fantastic museum/art gallery, then to a blues festival that was just ramping up. The main stage is pictured below, but there were other bands and dozens of booths on the side. The 2019 Chordoma Conference was great, and key takeaways are at this link. The main takeaway for me was something I already know: chordoma is a solvable problem and there is a significant amount of progress being made: Looking at Pubmed, I'm amazed there are so many recent chordoma papers being published. #Recent, versus what we saw published even just a few short years ago. While I no longer officially have a dog in this fight, I will see it through. Researchers have determined that when they break brachyury, the Achilles' heel of chordoma and interestingly a few other rare cancers, the tumors basically wither away.
It's a good time to be a mouse.
Something old and beautiful next to something new and well, no so much.
Chicago is very a noisy city, unlike Simi Valley. Chicago has magnificent skylines and is rich with architectural history, unlike Simi Valley.
Last week I attended an XMO summer camp dinner: it was wonderful seeing the trainers and athletes, as well as my sister Shannon who volunteered this year. XMO leadership presented an award to Pastor Simon (from Madison and Colleen’s church) for his commitment and excellence. As Bryan was announcing the award, I’d be fibbing if I didn’t say I was choking back the tears. Madison’s mom Colleen was next to me, so trying to appear casual I asked her how it was even possible that she’s holding it together. It turns out same as me, just barely! It’s not that we were hurting, but at least for me beauty and goodness often brings joy in the form of tears. Note in the bottom left corner of the picture below; the name of the award.
Overall June has been a busy month. We bought the PPV SUV, and I finally sold Madison’s car a couple of weeks ago. She’s smiling: rather than me settling for under-powered sensibility, I have something that’s all dressed up like a US Marshall’s SUV. Wait! It was a US Marshall’s SUV, so in Blue’s Brothers lingo, the cop horn, light bars, and siren… oh my! From the rear, it looks like a Chevy Tahoe with dark windows. From the front, cop push-bar, cop-tires, and 3’ light bar (inside the windshield behind the rearview mirror), a spotlight, and ludicrously loud P.A. I know what you’re thinking and have been asked the same numerous times; how can this even be legal? The official answer is that none of it cool stuff has power connected, as far as you know. I removed and sold the weapons locker/drawers from the rear of the SUV, so it now actually functions an actual SUV, so we can load dozens of load bags of soil, mulch, bicycles, trays of plants, etc.
While Madison loved the maximum miles per gallon, I know in my heart that she wouldn’t want me to settle for something that I simply didn’t like to drive... her car. I’m big, her car wasn’t. I have a high center of gravity, her car is low. On an uphill freeway on-ramp, I had to rev that thing like a sewing machine just to get up to speed. The ultimate reality is that is was her car... would never feel like mine.
In the SUV I’m actually more amazed that I expected to be with how courteous people drive around me. I’m not tailgated, not cut me off just ahead of a freeway off-ramps, etc. While I certainly haven’t earned nor do I deserve the respect of our anyone in law enforcement, the presence of the SUV does slow people down, dramatically reduces the selfish stupidity of impatient drivers, which makes the areas I drive much safer for everyone around me.
Yea, I’m going with that.