A Good Hair Day/The Pancreatic Tales

Chapter 21: A Good Hair Day/The Pancreatic Tales

February 13, 2017

Hi everybody!

Before I forget, please remember to donate this week to this wonderful cause….all donations need to be made before Saturday! Thanks to all of you who have already donated.

And if you want to be part of the walk (in addition to donating), please follow the links on the website.

The walk is this Saturday!!!

http://2017westlakevillagewalkrun.kintera.org/pancreatictales

I know I haven’t written for awhile….I just have not been motivated. I know a few of you thought my lack of writing meant that I wasn’t doing well. I am happy to report that…there really isn’t much to report. I started on “Plan B” (the new chemo treatment) about 3 weeks ago. It’s too soon to know how well it’s working or not.

I continue to struggle with my emotions, my fears, etc. It’s actually much more debilitating than any of the physical effects of the cancer, or the chemo. It’s been too easy for me to wallow in self-pity, to ask why me, etc. I think WAY TOO MUCH.

Tomorrow night I will be attending my first cancer support group meeting in West LA. I’ve been hesitant to go….probably some denial on my part, probably partly because while I’m sure I will learn a lot, I’m also afraid of what I might learn.

I will report on the first meeting later this week.

Again, and as always, thanks for your love and support.

I know some of you have emailed me, and I haven’t responded. I’m a bit overwhelmed, and it just is taking me a while to catch up with emails.

I can’t remember if I’ve written about this already or not——some of you have heard this from me in person. If we have any conversations, and I put my hand up and say “I don’t want to talk any more about this right now”, please don’t take it personally. I love and very much appreciate your concern, the outpouring of affection, the wondering how I’m doing.

But the truth is, sometimes I’m tired of hearing my voice. And I get tired of talking about this. Trust me when I tell you that I need the distraction.

It’s much more interesting for me to hear how YOU are doing. Or we can talk sports. Or politics. Or the Grammys. Or ANYTHING but cancer.

Thanks for respecting my wishes. And like I said…ask me anything. Anytime. I’ll let you when I’ve reached my limit.

Love,
Chris
GROUND RULES (these will be repeated in almost every post):

First, I would appreciate if you could keep this blog relatively private. It’s not that I don’t want people to know (actually, I do). It’s more about not posting this info on social media, where it could get back to my kids. My kids know what is going on (the basics, not the details), and I want to be respectful and mindful of them. If your kids know my kids, please use discretion as to what (if anything) you tell your children. Or if you see me in person with my kids, I would also ask that you use discretion as to what you say to me in front of them. I very much appreciate that.

Second, if you want to forward this email (or subsequent ones) to anyone, I’m totally fine with that.

Third, if someone forwarded you this email and you want to be placed on my email list directly, please send an email to chrisjoseph@mac.com. If I’ve forwarded this blog to you via text, please still email me to get on the master list.

Fourth, please forgive any grammatical errors and/or typos. Or the inclusion of too many commas, which I am prone to use. (Sorry, my dad was a proofreader, and old habits and voices die hard).

Fifth, if you want to stop receiving these, just let me know.

Sixth, all chapters of this blog can now be read at https://thepancreatictales.wordpress.com
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Chapter 20: A Good Hair Day/The Pancreatic Tales

January 20, 2017

INAUGURATION/HYPOCHONDRIA

I’m sure you are already wondering….what on earth could this blog post be about?

Well, the topics are not related…all I can say about today is that (as of this writing) we have survived nearly 7 hours of Donald Trump! On Facebook this morning, I posted an over/under bet idea on how long it would be before Trump got impeached…I said two years. But, perhaps the better over/under might be a bet on how long this country will survive under Donald Trump.

I welcome your responses.

On to more pleasant topics….cancer!

Before I proceed, I think you should watch this clip….George Costanza via a telephone call getting his test results on what he thinks might be cancer:

And read this column from Woody Allen, an expert on hypochondria:

Hypochondria: An Inside Look

No form of dying is acceptable to me — with the possible exception of being kicked to death by a pair of scantily clad cocktail waitresses.

Ok, I’m going to wait. Did you watch the 30 second clip? Did you read the column (two minutes, max)? I know I’m competing today with news clips of the Donald talking about his ginormous…IQ.

I have almost always thought the worst when I’m anticipating some personal news. Every test I took in college——EVERY test—I would walk out thinking I had flunked the test. Was it true? A couple of times, yes…but mostly I would wind up with A’s and B’s. But between taking the test, and getting the results, I was in misery.

After my father died of cancer in 1986, I remember being petrified for a year when I found a small lump on my back….of course it turned out to be a benign cyst. It took me a year just to go to the doctor!

These are but two examples, of many.

I’m that guy. I often think the worst.

So….when you actually get a test result that is worthy of scaring the crap out of you (“You have a tumor in your pancreas”)…it actually makes things even that much worse. One’s brain leads to thoughts of death even that much more quickly. And more frequently.

It’s been almost three months since I’ve received the diagnosis.

And I cannot tell you how many times I have thought the worst. I mean, and as I’ve written, for those first two days I thought I was going to be dead in three months.

But even with the good prognosis that the doctor told me back then and is still telling me now, I go on the dark side—down the rabbit hole—all too many times. I’ll explore in depth what I mean about the “dark side” in a subsequent blog post.

Honestly, dealing with the fear and the emotional fall-out from this cancer thing is as big a challenge as anything for me the last 3 months. A huge challenge. And the side effects from chemo are a challenge. And the physical effects from the cancer itself are a challenge.

It’s a big stew. Or gumbo if you live in New Orleans.

Anyway, thanks for reading. I really appreciate it. More than you know.

And please remember to donate to this more than worthy charity. Susie is leading the charge on this…here’s the link:

http://2017westlakevillagewalkrun.kintera.org/pancreatictales

Love

Chris
GROUND RULES (these will be repeated in almost every post):

Second, if you want to forward this email (or subsequent ones) to anyone, I’m totally fine with that.

Fourth, please forgive any grammatical errors and/or typos. Or the inclusion of too many commas, which I am prone to use. (Sorry, my dad was a proofreader, and old habits and voices die hard).

Fifth, if you want to stop receiving these, just let me know.

Sixth, all chapters of this blog can now be read at https://thepancreatictales.wordpress.com

Chapter 19: A Good Hair Day/The Pancreatic Tales

2nd Post for January 11, 2017

All-

To follow up on Susie’s PS from today’s earlier blog post—

Susie has a fundraising page for the 2017 WESTLAKE VILLAGE PANCREATIC CANCER RESEARCH WALK/RUN. The link is:

http://2017westlakevillagewalkrun.kintera.org/pancreatictales

Please consider a donation to this worthy charity! And if you would also like to participate in the event, you can also sign up!

Thanks in advance.

Love,

Chris and Susie

Chapter 18: A Good Hair Day/The Pancreatic Tales

An Update

January 11, 2017

Hi everybody.

Been several days since I’ve blogged….been busy with work, parenting and life, and just didn’t feel compelled to write.

Today I feel the need.

Originally, I was scheduled to get a new CT scan at the end of January. But last week, I told my oncologist that I thought I was feeling the discomfort (not pain) of the tumor more than I had in the past, and it was scaring me. It is such a weird feeling to describe. I’ve never had pain from any of this, but I have definitely “felt” the tumor.

I actually really didn’t know if I was feeling what I was feeling, or if was the side effects of the chemo.

So last Wednesday, the doc decided to do the CT scan earlier, mainly to put my mind at ease but to also to see if the chemo was working and the tumor was shrinking.

I went to UCLA to get the scan two days ago, on Monday. By the way, if you haven’t been there, or don’t live here in LA, the UCLA medical complex looks like a mini-industrial complex. It’s gigantic and intimidating!

Anyway…

So on to the disappointing news. Not horrible news.

I went in this AM to get my results of the CT scan.

The oncologist told me that the tumor had actually grown a tiny bit. Not much. But obviously not what he was looking for. Nor what I wanted to hear.

While I was trying to process the news, the doc told me we were onto Plan B….since Plan A was not working. By the way, I should note that he seemed surprised that Plan A wasn’t working.

Plan B is something as follows. Today I had a special blood test done, and it will take 1-2 weeks to get the results back. But apparently it is a very specialized (and expensive) test that my insurance likely won’t cover….but it’s supposedly/hopefully going to drill down to the DNA level to better show what chemical treatments will work since Plan A didn’t work.

As a side note, I am lucky that I can afford to do this. What about the people who can’t afford something like this? Our health insurance system is so screwed up. But, I digress….

I’m not clear why this test wasn’t done two months ago. Susie and I didn’t ask, but we will.

I asked the doctor again: will I be ok? He CONFIDENTLY said yes. His confidence has not wavered.

I would love to tell you that mine has not wavered.

Of course, it has.

Today’s news wasn’t what I wanted to hear.

But it also wasn’t horrible. It just means we’ve got to go in a different direction.

I had my cry.

I will probably cry more tonight. And maybe tomorrow.

Susie has cried with me.

But, surprisingly, I’m also laughing today. Susie and I have spent the last several hours together…she has held my hand every step of the way with this.

And we just finished lunch, and with our mutually twisted senses of humor, we have managed to come up with many ways to laugh. As we almost always do.

It’s all life, no?

None of us get out of life unscathed. None of us.

This is just my story, and this is how the story is right now.

I’m scared, but I have been for the last two months plus.

I’m also optimistic.

Until they tell me otherwise, I’m sure I will be living with both….fear and optimism.

More later, my friends.

Meanwhile, I have my life to live.

Let’s laugh. And let’s cry.

But no pity looks!

Love,

Chris

PS….the below is from Susie——

I saw at the doctor’s office today that there is a Pancreatic Cancer Research walk/run on Saturday, February 18th at the Westlake Village City Hall. I’m signing up, and I will need sponsors, and also walking/running buddies. Who is with me? http://www.lustgarten.org is where to sign up, and my email is sulavala@yahoo.com, if you want to coordinate with me!

Chapter 17: A Good Hair Day/The Pancreatic Tales

December 31, 2016

The Pity Look

Happy (almost) New Year, everybody!

For my last post of the year, I thought I’d dig a litter deeper into the blog post from Lindsay, the oncology nurse…that I posted about a couple of days ago. Her words impacted me very deeply.

So, I’ve decided to write a bit on occasion about my feelings about what she discussed…maybe once in a while taking a paragraph of hers, and discussing it a bit more.

Here’s one thing Lindsay wrote:

“I didn’t get what it felt like to get the sad looks all the time. Walking down the hall at work or seeing someone for the first time after finding out. You got the head tilt with a soft “how aaaare you?” You quickly got together your rehearsed “Doing pretty good, tired but hanging in there”generic response. Don’t get me wrong, I know you appreciated all the well wishes and concern- but it sure took a little while to get used to the pity. I’m sorry. I didn’t get it.”

I call it The Pity Look. And I have DEFINITELY gotten that look many times.

And indeed it is hard to get used to. I see the pained look in others when they see me….and because I’m also struggling at times with my own emotional pain, it can be very difficult to see the pain in others. I’ve bitten my lip many a time, just from this.

I know——I KNOW—that what I call The Pity Look is your expression of love, your expression of nothing but good intent, your expression of concern.

And I want all of that from you.

In fact, I don’t want you to change anything. Give it all to me, including The Pity Look.

But I’ll tell you what….maybe once in a while we can also joke about it….maybe you can wink and ask “am I giving you The Pity Look?” Or maybe I can smile and make a joke about it….”You’re giving me The Pity Look!”

Something. I don’t know.

But I do know that laughter (and tears) have not only sustained me the last two months, but my entire life.

So, sometimes you may see me cry. Or hear me cry on the phone. But I also want to say that people who are going through something like this need to laugh, too.

I want to cry with you. And laugh with you.

I hope this makes sense.

I love you all, and thank you for allowing me to share this with you.

Chris

Chapter 16: A Good Hair Day/The Pancreatic Tales

December 29, 2016….5:30 PM

Thank you Vicki S. for sending me this…

Folks, I urge you to read this. Please. For me. And for others who have or are going through this.

This is written by an oncology nurse, who was recently diagnosed herself with cancer.

It is more powerful than anything I can express, or have expressed. It had me crying. It has me crying even writing this to you.

So, please. Many of you ask me what you can do for me. Read this….though I may ask you for other things, too. 🙂

“When Lindsay Norris was diagnosed with cancer, she was numb, scared and shocked… but never once gave up hope. The young mother and wife is a oncology nurse, and never expected the diagnosis to fall on her shoulders. She spent her days consoling and counseling hundreds of patients and reassuring their hopes for a future… but getting cancer changed her perspective forever. Lindsay recently took to the internet to let her former patients know that she now understood the way they felt… and encourage them all over again. Check out her powerful words below.”
https://herecomesthesun927.com/2016/11/14/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/

Chapter 15: A Good Hair Day/The Pancreatic Tales

December 29, 2016

The Fog of Chemo

It’s been a few days since I’ve written anything….and it’s been a few days since I’ve really felt like writing.

To catch up:

The cumulative effects of chemo have been kicking my butt for the last two weeks or so. It’s only been in the last couple of days that I started to feel relatively “normal” again. The chemo has been making me tired, which means I’m not as active, and also the fatigue has been contributing to some sadness/depression.

It also contributed to fear about my overall condition. I simply wasn’t thinking clearly or rationally.

I was invited to four holiday gatherings…I chose to only attend one, Christmas Day with my extended family. Between being tired and not feeling festive, I just couldn’t bring myself to attend and try to fake that everything was “normal.”

I texted my oncologist a couple of days ago to express some concerns, and his quick response was: “Try not to worry.”

He is a man of few words. But it’s what I needed to hear.

Let me tell you….I’m glad that the fog of chemo has lifted for now. I am aware that it may come back, and I’m working on acceptance of that.

Life is an adventure! And going through the last couple of months is the perfect illustration of that.

That’s all for now.

Wishing everyone a Happy (or a happier) and Healthy New Year!

Love,

Chris

Chapter 14: A Good Hair Day/The Pancreatic Tales

December 20, 2016
The MTHFR Post
No, sorry to tell you that MTHFR does NOT stand, at least in this discussion, for mother fu****.
Backstory, please.
I’ve been poked and prodded so much over the last few weeks, that I’ve forgotten to discuss this——and I think it’s worth briefly discussing.
As part of my original blood work that I had done on October 28, before I found out the Halloween Day Surprise, one of the tests the doctor ran was to see if I had a MTHFR gene mutation.***
What is that, you ask? I know I did.
Rather than trying to explain it, I’ll lead you to one of the countless websites where this is discussed:
http://wellnessmama.com/27148/mthfr-mutation/
Please note that from my own reading and talking to a handful of doctors about this, it seems like much more is unknown than known about this genetic defect, and what (if any) illnesses or maladies it can lead to. My interpretation is that the study of this is in the infant stage (again, I’m giving you my impression—I can’t say with 100 percent certainty that I’m right about any of this), and much more study needs to be done.
Nevertheless. The blood tests results showed that I tested positive for this gene mutation. And one of the possible ramifications (emphasis on possible) of testing positive is that having this gene mutation may make it more difficult for the human body to flush out toxins.
At least that’s what my two main doctors are suggesting to me.
They aren’t saying: “this is what happened, and this is why you have the tumor.”
But they are saying that it’s possible.
My oncologist thinks that I will likely never know why I have this tumor, and I think he’s right. I’ve thought of a 100 reasons how/why this could have happened. All could be possible. Sometimes I think just growing up in the San Fernando Valley when the air was much, much worse than it is now….and, as a kid, running around during recess and then coughing/hacking for a couple of hours after that because of the dirty air. Or maybe I did too many drugs when I was a teenager (ooh, that could be the subject of another blog!). Maybe (controversy alert!) when I was bombarded with vaccines back in 2001 for a trip to Nepal, something went haywire there. Maybe, maybe, maybe.
Anyway, it’s an interesting topic, at least for me. I’ve learned so much over the last few weeks, and this is yet another topic/thing that I had never heard of.
Thanks for reading!
Love,
Chris

***MTHFR stands for methylenetetrahydrofolate reductase

Chapter 13: A New Hair Day/The Pancreatic Tales

December 19, 2016

THE BIRTHDAY POST (and a new Chemmy Award Winner!)

Yes, ladies and gentlemen, I turned 60 today! Cue the balloons from the rafters! The celebratory music! The gifts! The parties!

Instead, I’ve had some severe side effects from the chemo. So…..

No balloons. No music. Some gifts, yes. No parties.

Reality bites sometimes.

To rewind back (can one rewind forward?), a couple of months ago when I was blissfully unaware of this thing growing inside my body, I was sort of dreading turning 60. It sounded so…..OLD. And I kept wondering how life had flown by so damn quickly!

This had been a trying year in some respects, even before the 10/31 diagnosis (The Halloween Day Surprise, I will now call it).

I had had some reoccurring issues with my back, which with some good physical therapy had seemed to (and did) get much better.

But I was sort of ambling towards 60, mostly thinking that this was just another year.

’Twas not to be.

After the Halloween Day Surprise, when I started on chemo, I went through the first few weekly treatments thinking….”well, this isn’t fun, but this isn’t a disaster.”

To be clear, I still don’t think it’s a disaster.

But, like with life itself, I’ve learned that last week’s side effects don’t necessarily mean that this week’s side effects will be similar.

So, around Friday last week (two days after my treatment), I started having some very uncomfortable stomach issues (things that you readers really don’t want to know the gory details about). In addition, my throat got really sore, and my lips were very burned.

This went on over the weekend, when Susie and I were in Laguna at what we jokingly called “The Ritz Fucking Carlton!” (It really was the Ritz, and it was and is quite beautiful there.)

And the stomach issues have continued today.

Not fun.

So not fun.

I could add a few exclamation points to that, but I think you get my point.

So, if there was a “how I spent my birthday” essay, mine would essentially be: in bed and/or in the bathroom.

I am trying to adopt a zen “it is what it is” attitude towards this. I probably get there maybe 20 percent of the time. Room for improvement!

Sometimes I’m sad about all of this. Sometimes I’m angry about all of this.

Or both.

I’m not writing this for sympathy or empathy or anything like that.

Life throws you curveballs once in a while. Or to continue with the baseball metaphor, sometimes the batter gets beaned by the ball. But the batter has to get up and get back in the batter’s box and face the next pitch.

So that’s what I’m doing. I’m facing the next pitch.

And in a few months (who’s counting? I AM!!!!), the chemo will be over.

Writing helps. Thanks for reading this.

On a much lighter note, we have a new winner in the Chemmy Awards.

But it’s not fit to print. It’s just not. I know, last week’s wasn’t either. But this is as funny, and even more not-family friendly.

If you want to read it, I’m happy to send it to you privately.

But know that our winner is Jordan Roberts of Venice, California. And because even a good blog post should engage in product placement, look for Jordan’s new film “Burn Your Maps”, to be released in March.

All for now!

Love,

Chris

screenshot

Chapter 12: A Good Hair Day/The Pancreatic Tales

December 15, 2016

Briefly: Wednesday was a good day. At chemo, the doctor gave me permission to go back in the pool. And they took off a pump I’d been wearing this past week, which allows me to actually shower now like a normal human being. And which will allow me to practice yoga regularly again.

Also, Susie and I (and Max the dog), took a nice leisurely hike in Mandeville Canyon. We came home, and as I am generally most tired on chemo day, I took a nice long nap. Which also explains why I’m up in the middle of the night writing this……this isn’t insomnia; this is “dammit, maybe I shouldn’t have taken that long nap!”

Yes, sometimes I play hooky from work I’m lucky—I have some really amazing people I work with. Sometime soon, I’ll also write about them. But know they are an inspiration to me. And that I am so grateful for them.

I’m realizing after writing about depression and after starting the Chemmy Awards, that while reducing loneliness is a big reason why I’m writing this blog, a couple of other reasons are that this gives me a way to cope with what is going on. I mean, I have other ways, as well. But being able to write all of this down is helping me soooooo much. And I truly pray (and I’m not generally someone who prays) that all of you reading the blog are getting something out of this.

And another reason to write and share is that (and Susie brought this to my attention) this is a way to create a support group. I’m not ready yet (and I don’t know if I will be) to join a cancer support group. I know they help countless people, but I don’t know if I want to hear other people’s stories right now. I want to focus on MY health, and healing, and my life, and my kids, and Susie, on being the best ex-husband I can possibly be, and of course on work.

Many of you reading this blog have had cancer, or currently have it…and ALL of us know or have lost people to cancer. And interacting with some of you privately to hear your experiences has helped me tremendously. I’m just not ready to sit in a room and hear people’s stories, or to share mine that way.

So writing is my preferred vehicle right now.

Every day, I am humbled by what is going on.

Every day, I get scared—what if what I’m doing doesn’t work? Are the doctors not telling me something? Even though I’m pretty much pain free (not discomfort free), could things get worse?

At the same time also every day: I’m trying to live in gratitude, live in the present, and enjoy my New Normal life as much as I can. And most of the time, I can!

None of this is easy. Even the writing is not easy.

So when I write about depression…when I write about the Chemmys….or, when I write about the struggles, the difficulties, the fears from this diagnosis……ultimately I’m writing because I just want to share all of this with you.

I’m re-reading what I wrote just now…and I also forgot to mention that today was also a big crying day. It just happens. And I generally don’t try to stop it when it starts. I feel like ultimately that’s helping me, as well.

Boys don’t cry….BULLSHIT!

My theory is that one of the reasons women live longer than men is because they are better at showing their emotions, at letting things out. Not a novel thought, probably. But I certainly haven’t seen much written about this.

But I digress.

From the bottom of my heart, thank you for reading this. I got responses that make me cry (in a good way), make me laugh, make me think, and make me feel far less alone.

Stream of consciousness writing today.

I will write about religion. Very soon.

Love,

Chris