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Emotional Things Alert

11/26/2018

 
I have a lot to be thankful for, but it's impossible not to reflect that this was the first Thanksgiving without Madison for moms, me, friends and family. I've found a men-who-have-lost-a-child group looking for insights as to what's 'normal', and have read about very similar scenarios, but with one major exception... but first a brief recap.

A couple of years back Madison, moms and I attended a seminar at the Cancer Support Community that was hosted by a pastor, someone who was assigned to the oncology ward at UCLA in Los Angeles. He had spent a significant amount of time with thousands of dying patients and their families over the years, and learned that cancer patients wanted three things when it came to death. They want to go quickly, pain-free, and in their sleep. In digging a bit deeper, he asked them if there was a time machine that could transport them back to the day you were diagnosed and people could go quickly and pain-free while asleep, would they? Overwhelming, no... more that 95%. He asked about treatments like surgery, chemo and radiation: "knowing what you know now being here with me, now you'd do it all again?" No.

We saw the 'why' with Madison. Despite two surgeries in 2013, two more in 2014 along with brutal chemo and eight weeks of radiation in Boston, still a 'go'. Another highly invasive surgery in 2015 to repair a hardware issue that caused a software problem (titanium plate on her spine rubbed a hole in her throat). And then the suspected metastasis in November 2016 that was confirmed with Brachyury in December. But! She still went to Mammoth with Nathan and his family (link here) in November 2016 despite the clinical presentation,  and in December knowing what she knew, Madison went to Colorado with Marleigh and her family, link here. Those examples along with her five XMO camp(s) experiences are why people wouldn't transport back... there's just too much to miss out on, especially if the future is uncertain.

So anyway, back to where I started. Had Madison been a 'normal' kid, she could have gone off to college for four years, and collectively we'd have seen her only during summer and winter breaks. Most parents who've had kids away at school know there's that light at the end of the tunnel. Unfortunately Madison wasn't a normal teenager, but became an extraordinary human being. In my men who lost a child group the stories are heart-wrenching; reminders how suddenly things can change, how fragile we mortal beings are and how precious life is. Auto accidents, drowning, suicide, overdose, murder... the whole range of non-cancer related deaths, and I find myself feeling lucky and blessed in a way. While obviously sad for our loss of Madison, moms , myself, Madi's friends had her with us for the four years she could have been away at school, and then lost her suddenly and tragically to one of the more common things that can occur. So from a selfish standpoint, I'm very thankful this season but don't feel like I'm in a celebration mode. I certainly can't express thankfulness in my men who lost a child group: I can't relate to them and their depths of a sudden loss. While greatly saddened about my loss along with others who knew and loved Madison, I feel thankful and even blessed to have stood beside her in all of the surgical waiting rooms, doctors offices, road-trips to San Francisco, and post surgical rehab/assistance she needed at home, moms included. We're thankful, but not really of a dancing or singing in the car mindset. Yet. shall come... Madison agrees, and oversees that. 


As per usual Madison's mom Colleen picked up Bailey last Friday night. Colleen asked if we were going to put a Christmas tree up this year. No, we're skipping the ritual this year, Colleen is too. Last December was obviously when things took a turn for the worse. I'd written several times that she passed away Thursday, January 4th. The prior Monday, Tuesday, and Wednesday for her were some discomfort with 'pain', but well being well controlled by meds> We watched movies with her in her room and took naps. I'm thankful: the only better ending would have been a cure, or at least something that would have suspended the advancement of this rotten disease. 

So Thanksgiving 2018: we had Angela's family and my mom over for a feast-in-a-can on Thanksgiving, heat and serve. We learned that what we thought was mashed potatoes on the top, was actually fat from however this concoction was processed. Lesson learned, and all 10 cans looked exactly the same. So much for serving an 'easy' meal.
All kidding aside, Angela prepared a wonderful meal. My mom brought flowers, Madison's cousin Hannah made sprouts with a ton of bacon (can never go wrong with too-much with bacon : ), and Madison's aunt Rikke brought over yams and and pies, even despite my no-yam guideline for Casa-CoHonez. (Honez, a nickname, is Jones in Spanish)

We're skipping the Christmas ritual this year inside our homes, but we will go to parties as invited, and I'll hang Christmas lights outside. When Angela and I discussed decorations and a tree, it seemed like a simple decision. We have three Christmas stockings: when we pull all of the Christmas boxes out of the shed, do we leave Madison's stocking in the box, hang it on the fireplace with ours, or simply forgo the tree and decorations ritual this year? We'll plan a late December get together with our family as we normally do: it may or may not be on Christmas day, and we'll likely order pizza or do a simple...  non-Christmas pot luck. I've learned in my group that how I feel is more normal than not, because as you're likely aware if you're been following this site... it's all about me :-)

So all that said, I'm truly thankful for the love of family and friends: Moms and I are not yet ready to start dancing at parties or doing solo karaoke while driving. #Yet

Hashtag yet, but it will come...
​
Love, 
Mums and me

Some Musings and a Request

11/14/2018

 
I heard from two voices from the past yesterday, one of which was the therapist/host of my men’s (cancer) caregiver group from 2013-2017. We had lunch at a very busy deli and he mentioned wanting to get a table where it’s quieter, which we did. Phew. Once seated I mentioned that my tolerance of noisy environments isn’t what it used to be, part of my new-normal. He laughed and said “naw, you’re just getting older and more set in your ways”. Huh! Is that what happens when one turns 60? Nope, I think not... 60 is the new 40! It was great seeing Phil, who is a board member at the Cancer Support Community. Reflecting back to 2013 for my first Men’s Caregiver group meeting, the other men all welcomed me, told me their story, and then it was my turn. Gulp… pause. Okay, let’s try that again. Gulp, then tears more tears, but I finally choked out why I’m there out with tears streaming down my face. I learned that was my safe place, which I can say things to these gents that I couldn’t share with anyone. Example, I’m terrified that my daughter will die. I couldn’t say that to other people without them thinking I know more than I’m saying or don’t have faith in the treatment plan, or without receiving a pep talk how people beat cancer all the time… that their aunt had breast cancer and she beat it, Madison will too! Madison finally went to her group and found her peer/peeps, people she could truly open up with who ‘get’ one another. As Madison wrote here “The Cancer Support Community gave me a safe place to share my experience with a group who would understand. They provided me with tools to manage the stress and the uncertainty and I also believe they led me to acceptance. I am part of a great group of people. We laugh, we cry, and we are there for one another, which is so valuable since cancer can be a lonely experience.”  I mention this because...

I learned yesterday that the CSC needs volunteers for their Holiday Homes fundraiser in early December. This is their final hurrah for 2018 and if you’re local and in a position to help, please sign up at this link: you will feel good about giving your time, I guarantee it, but don’t do it like I did for the PTA when Madison was in elementary school... I will find you!

Jan RN sent me a text last night: She was thinking about Madison and took a picture of the bracelet still on her wrist that Madison gave her for Christmas last year. Jan RN was Madison’s nurse, was at the Color Run cheering Madison on with her doctor, and Jan committed to doing it this year with me and other Madi-fan’s. While the Color Run was a year ago yesterday, it actually didn’t pan out this year. The website still has “November 2018, date TBD”, they didn’t respond to my emails, so I’m shifting in to plan-B for 2019 to see what I can get away with... it'll take 8-12 months to get those ducks in a row.
 
Last Thanksgiving Madison and her mom were dishing out food to some homeless people. It’s difficult not to reminisce thinking back about milestones, but so many of the memories make me so proud of Madison and that being just one of them. So if you live locally and you can spare one half of one day to help the CSC this season, please call them! They have several dates and time-blocks available and they need our help and again, don’t be me 15 years ago. Madison’s mom and I separated when she was five and we actually got along better than ever. Angela admitted to studying our relationship because she wanted to understand what she was getting in to. The PTA was looking for volunteers during school days, but moms and I worked full time. I did get some hardcopy volunteer forms, and signed up for being a classroom helper, study buddy, driver for field trips, snack mom, basically checking off ever box for every gap they had. That said, I put Colleen’s name and phone number down. Over the years Colleen mentioned to me that the PTA seems relentless finding volunteers. “Every year I explain that I can’t help during the day but they just keep calling!” I finally clued her in years later, that I checked all of the boxes but may have inadvertently put her name down. Colleen laughed harder than I did : - )
 
While most people work and can’t step away during the week, please consider filling a gap for the CSC’s final fundraiser of 2018. Even getting a brief four hour glimpse in to what they do for so many of us impacted by cancer, you’ll be amazed, inspired, and will feel good!
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If you know someone who has been diagnosed with cancer, encourage them to find the CSC or one of their many dozens of affiliates. The first step in the door is a hard one, and the first meeting will likely be rough. In the long run, it's emotional support and nourishment from people who know how/what to feed people like us. 

I hope you have a nice Thanksgiving, embrace and enjoy your friends and families, and have a nice long weekend.
Love,
Chris

We Have to Stop Saying That

11/14/2018

 
Father Mike Schmitz tackles one of the toughest questions religious believers must answer, link here. I heard recently something from a woman who lost her husband to cancer. She told me that "God takes the good ones first". My initial unspoken reaction was to ask her if she believes that, or if she thinks I might. Then I felt bad, and of course sad. Given she was talking about her own scenario, I remained muted on my thoughts and I expressed sincere my condolences for her loss. What she believes is her truth, and I'm sure she lost a very good man.
 
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Father Mike (link above) made a great point... that we have to stop saying that "God has a plan" and "all things happen for a reason". People may question their faith when they can't pray cancer away. I don't mean to sound like I'm preaching here and while I agree that prayer is extremely powerful, God doesn't intervene or selectively wisp people to heaven, or allow them to physically suffer.

I heard of a man praying to God night after night so he would win the lottery, and this went on for many months. God finally answered, and suggested to the man that he should actually buy a lottery ticket. While it was obviously humor, the person who told me illustrated that while God is all-powerful, He doesn't intervene. 

I'd written about attending two bereavement meetings where I was the only one who had lost a child; everyone else had lost their spouse. They all had applicable pain and challenges, just not applicable to me. I've since found a men's group for fathers who have lost a child, and oddly I felt like I was a lucky one. I'd say 95% of the group members lost their kids to something sudden and senseless, a catastrophic car accident, murder, suicide, overdose, etc. With the recent massacre at the country western club just over the hill in T.O., or to people who lost their homes or family members to the fires here in SoCal, can you imagine their reaction of someone got up in their faces and said "all things happen for a reason"? We have to stop saying that to people who have lost loved ones to disease. There is no need to 'help' rationalize our loss, just as ludicrous to say it to someone who unexpectedly lost a loved one. That said, I may have said that to me five years ago... lesson learner.

During the dinner mentioned in the prior post, I was chatting with two of my favorite chordoma peeps, Heather and Steve: they lost their son Justin to chordoma in 2008. We were idly chatting about how people seemed desperate to 'help' us. Heather, who has a PhD, mentioned her reaction to people who told her that all things happen for a reason. She told them "NO, God does not give nor allow a seven year old child cancer" and basically just ended the conversation then and there. I could see the intensity in her eyes, and to reiterate... we as a society need to stop saying that to the families of cancer patients who've lost a loved one. Imagine saying that to a parent of someone who lost their kid at the recent shooting at Borderline?! 

Angela, Madison and I saw someone speak who I'd written about previously, David Kessler. His guidance of what to say, and what not to say are at this link.

God bless the firefighters and all first responders, and to people who lost loved ones or property in the fires, or the senseless shooting... you and your families are in my thoughts and prayers... I'm so sorry for your losses.  

Brachyury & Chordoma

11/13/2018

 
I had the privilege of attending a Chordoma Foundation (CF) meeting/gathering in Raleigh earlier this month. Among the group of 25, there were five researchers there who are specifically focused on brachyury research, one of which was Dr. Charles Lin: There's an excellent video at this link that outlines what brachyury is, and the quest to find it's Achilles heel. Dr. Lin reiterates that turning brachyury off is a solvable problem, and other researchers echoed his thoughts... all of them. It's not a matter of 'if', but 'when'.

Another researcher Dr. Opher Gileadi mentioned something in a context that fascinated me, I had never really thought about it. As a scientist, funds are typically granted for something specific, but it's in a bubble/silo of sorts. He mentioned that  it can feel like he's not part of a solution for actual people that he can relate personally to. That evening an additional 60 people joined in for a sponsored dinner. Dr. Gileadi mentioned being inspired having met actual human beings who are impacted and united to cure this rare disease. Meeting with other researchers who are focused on brachyury seemed to energize each of the five researchers (and the rest of us!), and the scientists can all build upon one another's brachyury progress to date and from other lessons-learned. Mingling with actual patients, spouses, and parents seemed to invigorate them at a personal level: To quote Dr. Lin he and his team are "working on something that really matters." It's a 30 second read and three minute video link here (but this time actually click on it : )

There were several couples there who had lost a child to chordoma, so we have that uncommon bond. I really like that they're staying  involved with the CF, and I think they were glad that I'll stay involved carrying the baton for Madison. Below, a picture of Josh Sommer, and one with Madison and Josh at the 2006 Chordoma Community conference in Boston.



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​My friend Maureen lost her daughter teenage daughter Angela to chordoma: To quote her: "don't let this be a story to never speak of again, let it be the beginning of a beautiful one." Angela's wanted that. 

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