Isn’t really ironic, don’t you think?

Been sick lately, to the point of desperation. To make matters worse I have also been haunted by a vicious ear worm from the 1990’s. Namely the lyrics to Alanis Morrisette’s “Ironic” keep rattling their annoying, but apparently all too catchy, chains in my head.

I mean, “Isn’t it ironic, don’t you think?”

Man once given weeks to live celebrates 5 years as a cancer survivor.

Medical organization does a story on him which gets picked up by local new’s agency and then nationally, culminating in worldwide organizations telling the story in different languages.

However. Meanwhile. In Other News. 

As the articles and stories roll out, man begins to experience troubling symptoms.  

‘This is nothing. I fart in the general direction of side effects,’ he thinks, ‘that is my daily bread as a cancer patient undergoing immune therapy.’

But things get worse.

The food he eats makes encore appearances in his mouth- because you know half digested bile infested veggie burgers are so much better the second, third, fourth, fifth times around!

Followed closely by constant nausea (not necessarily related to redo of v-burgers but couldn’t blame if the case), then by a complete failure to digest  (a condition called ‘gastroenteritis’), culminating in loss of many nights sleep and chronic puking.  

30 pounds and more than a few appointments, tests and studies later, doctors tell him cancer is on the move again. New tumors encircle his pancreas and there’s another “bright spot” on the pet scan in his neck.

These results elicit a chorus of new songs in his head. 

Pretty ironic, right? In the midst of celebration we get clobbered with this $@#! news!

Actually, um, I hate to break it to myself, but that is not the definition of “ironic” or “irony.”  According to Bob HarrisIrony requires an opposing meaning between what’s said and what’s intended.’

So that means irony is different from “When it rains on your wedding day, or a free ride when you have already paid.” Sorry Alanis. It is not about unhappy coincidence or bad luck.

Wait- does that mean a song called “Ironic” which does not actually contain an ounce of irony is not ironic? And more importantly, will talking about that song loose my head from its iron grip? I am thinking those answers are a yes and a no, respectively. Sorry me, or the me that will be taking a shower or driving to work tomorrow morning, humming along. What a terrible, unhappy coincidence! What bad luck! 0-;

Anyways, one thing I do know is that this situation has sucked.  Its been one of those fun reminders that I am not in control despite whatever means and measures I might take with diet, exercise, medical regimens, good thoughts, prayers, puppy sacrifices etc.

But I am pleased to say we still have hope. There are good reasons for that. For one the last few days have been better. I just began a new combination of medicines that seem to be working. I have been waiting to post here, as a matter of fact, until I had some evidence.  That evidence is that I have kept food down and have gotten 2 nights of very restful and I daresay much appreciated zzzs over the last few days.

I am taking tramatinib and dabrafenib which are FDA targeted therapies. Pretty cool stuff. They use small molecules that can get into a cell and interrupt the function of the cells, causing them to die (in this case targeting mutated BRAF and other proteins or kinase for disruption).

The trick is that this combo, while having pretty good response rates, is not considered “durable” or long lasting. The typical response is @ 18 months of progression free survival. So we are planning on, provided this all works, pursing a strategy of taking for 6-12 months and then seeking more durable treatments. This should in theory buy us some time while continuing to keep this as a option in the future if I get in trouble again. Thank you Susan Steel of the SoS foundation for that strategy and may you rest in peace, https://skinofsteel.org/founders-story/.

The last thing I will say is that I am renewed in my faith today. I typically don’t talk about this stuff here. I know that my friends that read this come from all different perspectives and I am not seeking to force that on anyone. There is in fact nothing that turns me off faster when someone does that to me. I also am not a big fan of people making huge declarations about what God is or is not going to do for them. The reality is I have no clue what God will or will not do. Nor do I want to make such bold predictions only to be led in a different direction if that be the case. For me that would be pretty selfish and stupid and, at the end of the day, bad press. I just want to gave it my best and, while far from perfect and wholly error prone, say that I am okay today. I am good enough, not necessarily smart enough, and at least a few people like me or at least can tolerate me. Thank you Jack Handy.

Despite what’s happened or what is going to happen, it’s okay and I am okay. I believe faith has something to do with this today.


BTW here’s the litany of articles published over the last few months. I have not searched in a while but there may be more. I am amazed how these things get recycled and what happens to them when they do. The Brits were saying I had, for instance, 98 brain tumors removed. Maybe there is a different definition in their version of English, but if I had 98 tumor removed there would be little left of my already little brain.

Original CU Health Article: https://www.uchealth.org/today/2017/08/30/98-brain-tumors-lessons-in-fortitude-and-forgiveness/

Local news story: http://denver.cbslocal.com/2017/07/26/survivor-cancer-brain-tumors/

National news story: http://www.cbsnews.com/news/father-of-2-feels-great-after-surviving-98-cancerous-brain-tumors/

Inside Edition: http://www.insideedition.com/headlines/24744-father-of-2-said-he-never-lost-hope-when-he-was-diagnosed-with-98-brain

German: https://m.hln.be/nieuws/buitenland/-ik-kreeg-de-ergste-kankerdiagnose-die-er-is-maar-na-vijf-jaar-ben-ik-er-nog-altijd~af1c3e7d/

Greek: https://anonymoigr.blogspot.com/2017/08/98.html

UK: http://www.dailymail.co.uk/health/article-4737632/Man-98-TUMORS-removed-brain.html

More telephone games:

https://firenewsfeed.com/news/311269

https://www.flushtube.com/video/xW3DuSx9zcw

https://www.clickondetroit.com/inside-edition/father-of-2-said-he-never-lost-hope-when-he-was-diagnosed-with-98-brain-tumors

https://www.msn.com/en-us/news/good-news/father-with-98-brain-tumors-in-remission-theres-no-guarantee-at-this-point/vp-AApbU21

 

4 More Years

Four years can have significance in our lives. 4 years of high school. 4 in college. 4 for political office. There’s that chant when someone is vying for a second term in office, “4 more years, 4 more years.” In my case, at least lately, 4 more years is about surviving cancer.

It was April 17th, 2012 when I got a call at work from the dermatologist. The doctor’s voice trembled a bit as he read the pathology. I don’t know if that was because he thought I was going to sue his practice’s collective nose jobs, butt lifts and eyelid tucks off, or if he really cared…either way…I won’t easily forget the description he finally gave in human readable /non medical terminology, “It’s very thick and very deep.”

Never good when the doctor is upset and resorts to human understandable terminology instead of obfuscating words like “Breslow’s thickness, Clark’s level or mitotic state.” I basically translated all of it as, “You are pretty much-totally-completely-absolutely f-d Leland” and flew home in a tearful panic.

There have been lots of moments in the last few years when I contemplated death. What my funeral might be like. Who would be there. What pictures would they show. What the song list might be (gotta have some Garcia in the mix, I mean pa-lease). What would happen to Sarah and the boys? It was nearly impossible not to “go there” when they were sliding me into another MRI or pet/ct scan, drilling holes in my head for the requisite gamme knife cage, or putting a line in my arm for a fresh infusion or pull of blood for whatever. Discovering I had 43 brain tumors evoked certain dark thoughts. Those thoughts thickened an already bubbling stew of ruminations about tumors in my stomach, lungs, liver…later topped off by the news that there were actually 98 and not 43 tumors in my brain…a morbid-inspiration soupy mess, yummy yummy.

And I know I’ve been quiet online with www.98braintumors.com lately. I can rattle the reasons why I haven’t been writing much here: tempo and demands of work have increased; general disgruntlement about dealing with ongoing treatment side effects (translation – grumpy); boy’s hockey and lacrosse games involving protracted car-rides, usually equidistant to moon; getting up earlier, staying at work later; ‘Walking Dead’  and now ‘Fear the Walking Dead,’ soon to be ‘Game of Thrones’ (heck yes); iphone game binges; NHL playoffs; exploration of thoughts about starting start ups; resuscitation attempts at a long lost novel…

But at the “end of the day” what I want to say tonight to anyone trolling the internet looking for a hope is this:

I WAS HERE FOR FOUR YEARS

and

I AM STILL HERE.

So tell your fricking dark thoughts to piss off. Take a match to whatever statistics, disparaging words, or other bs you have rattling around in your head. Burn that cat shat up. Get off your proverbial couch or pity party or whatever has got you, and get moving doing something.

And if you are so inclined, hit your knees. Ask Whoever and Whatever you believe for the strength to get through whatever you are going through. This doesn’t have to be yet another end of your world, again. The “beauty” of this experiment (and I do believe, as counter intuitive as this sounds, faith is a scientific experiment) is this, “What choice do you have? And what exactly do you have to lose?”