Thank you all for your wishes and your kind praise of dad.
I've linked the obituary at his blog http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/obituary.html
His memorial service is today, and while I'm not going to be distracted with technological issues, I do plan to set up a video camera to capture the event. Since you've become his family in the same way that soldiers fighting a battle side by side become family, In a war, there are many battles. Some warriors are felled in battle. Some throw themselves into the path of danger to protect others (as with experimental surgeries). Some mentor other soldiers, preparing them to survive their part in the way (a role my dad took on). Some get lucky and survive, and some powerful warriors are less lucky. But in the end, spending years with a band of brothers and sisters fighting a heartless, inhuman beast turns strangers into family. And so it was for my dad. He implicitly sought a promise that I'd care for my mother, but the only explicit promise he asked of me on his last day was that I update his blog if he didn't make it. This family, forged in a shared, frightening common battle against a heartless beast, this family forged in common support and empathy, this family that met not in person but in heart, this family was on his mind on his last day. As well it should have been. He died with me at his side, with his wife at his side, with his children and grandchildren in his heart, and with your thoughts and presence surrounding him. Thank you for that.
I'd like to post the memorial so you can watch it. I'm not going to be babysitting the video camera, so if there is a technical failure to record the video, so be it. But if things go as planned, after a few days I'll be able to put up a link to the video.
I see about 3 more posts to the blog. "Eulogy", "Dying", and "The Future" are likely titles. I intend to post the eulogy I wrote for him after I deliver it today. I've been drafting a pretty detailed account of his last day called "dying" (incredibly hard to write, but he found it so important to bluntly share his experiences to help others prepare for what they might face). I then intend to close with a post about the future, although the ideas about that are kind of amorphous so I'm not sure if that post happens or if it happens the way I'm thinking about it today.
After the last substantive blog post, I'm considering a fundraising and patient support blog post. This would be links to a PDF version of his blog, a print version, and perhaps a Kindle format version. They would be available at cost (so PDF free, ebook free, if distributed via Amazon the minimum cost, physical book probably expensive even sold at cost). Patients need support, and family, friends and patients would be encouraged to use the book without paying. For those who find value in the book and who are able to afford it, I would include information about how they can pay what they wish, donating to MCC research donate voluntarily in exchange for the book.
I'm off to prepare to bury my father. I'm having a hard day, but having just read this thread of comments [a set of emails sent by MCC group members in response to my post that he had died], my day is that much easier.
The power of community cannot be overstated, and the power of this community is particularly strong.
Thank you for your love. I know my dad was grateful for your support to the end, since he went out of his way to expressly say so. He was fitted with a BiPAP mask much of the day, so he spoke perhaps a thousand words or less on his last day and he reserved some of those for you. I'm glad he did so. You deserve it.
Now I ask each of you to honor him by beating your own MCC. Please make my father one of the last to die by this disease. You've described it as a beast and a bully and by all manner of other names, as my dad did, but ultimately it is just some cells in your own bodies making the horrible mistake of thinking that they should keep on reproducing. It isn't an intelligent enemy or even a powerful enemy. It is nothing more than a biological mistake. This isn't to underplay how virulent it is -- it took my dad, a powerful, determined, brilliant man. But this isn't an intelligent enemy or even a particularly crafty enemy. It is a mistake of biology, and it will be beaten. I know it is disheartening to see a warrior like my dad lose his battle, but it would be a tragedy if his death were to do anything but strengthen each of your resolve to beat this thing.
I know that this group has been very civil and avoided language that wasn't family friendly, but in the heat of the moment, waiting to be let in to see my dad, I posted something to facebook that captured my feelings about MCC. In the law, we make an exception to the hearsay rule for an "excited utterance", under the theory that when somebody is experiencing an enormously emotional, critical moment, they aren't going to lie and they will speak what they're really thinking. So here is the post, which expressed in no uncertain terms what I was thinking at the moment: "Just had the surreal experience of following an ambulance carrying my dad to The hospital. spO2 well <80% possible atrial fibrillation, irregular heart rate ranging from what I saw up to 180. Fuck you, cancer."
As I prepare to bury my father, let me say that "Fuck you, cancer" was, if anything, too kind to cancer. Cancer, you're taken my dad away from his grandchildren. You've robbed his MCC group family of his wit, advice and love. You've made my mom a widow. You've made me the patriarch of my family at 45. You've sent a man who could have saved hundreds or thousands of lives practicing medicine for another decade or two to the grave. You, cancer, must die. You faced a resolute foe in my dad and beat him, but he wasn't your only enemy. There are leaders like George and Audi who are organizing forces against you. You have smart and creative enemies like Paul Ngheim who are preparing to crush you as surely as you've crushed lives and families. Your days are numbered, and when they write your obituary, I'll be proud of my dad's role as a member of the force that fought against you helped put you in the ground.
I love my dad and I'll miss him. I know you all feel the same way. Thank you, on his behalf, not just for the strength you provided him, but for the opportunity to give him to chance to beat MCC if not in himself, at least in the others he helped along the way.
