Daily Archives: May 11, 2019

You Walk Him and Pitch to the Rhino (A Misanthrope’s Guide to Sarcoma)…Prepublication Notification………An Interview by Natalie Imbruglia….”there’s nothing where we used to lie, conversation has run dry”…

RV Car

 

Everything in italics here is an intro.  It is the longest intro in the history of the written word.   If Guttenberg had seen this intro, he would have thrown up his hands in despair and never invented his printing press….thinking it would be way too much work to do the set up.    If you drink, get yourself a drink:  this is a long one.   If you’re sober, make yourself a pot of coffee:  this is a long one.   Remember, proper hydration and kindness are the keys to life.   As is a rock solid left hook.

 

My house went into escrow on March 11 and then days ago I moved into a pimped out Winnebago, where I can spend 30-60 days at a time in left coast states where my fixed costs can be locked in at $3K or less a month.   This move may cause some to ask “why” and maybe postulate that I am on the run from the law (always a possibility) or that I have become a meth head (never a possibility….I am super bad with tools and rewiring things).   I am neither on the run from the law, nor a meth head and this is the backstory on the move.  I would prefer to tell my own story just once….. and I am going to tell it exactly one time.     

 

This one time.

 

Feel free to come back to this piece as a reference, should I ignore calls, emails or texts about one of three topics:   cancer, selling my house, or living in an RV.   As an FYI, I will ignore all calls, texts and emails about cancer, selling my house, or living in the Winnebago.

 

I’ve been dealing with the former for quite a while and the latter two for ten months:  they are not topics I want to discuss.   If you have sarcoma questions, there are a bunch of links at the bottom and inserted photos.    You can also use The Google on your own to look up “pelvic, grade 3 round cell dedifferentiated liposarcoma with lymphovascular invasion” and read whatever peer reviewed research you want.   Stay the hell away from message boards, though….they are populated by the ignorant and the criminally insane.   I have had thirteen surgeries in the past ten years and have avoided message boards like the plague because, again, they are populated by the ignorant and the criminally insane.

 

This is also a promo piece for my book, which ought to be done for Christmas, 2019. It may be unreadable drivel, it may be entertaining.   We’ll see by the fall.    Details on the book are roughly halfway through this piece, which Tolstoy would call “lengthy”.

 

 

I have had cancer for a while, the “a while” part length depends on how you slice the bread.   It’s been 5 years if you count when the fatigue, the odd weight loss and gain & night sweats started back in 2014.   That’s probably when the well differentiated liposarcoma started.   It’s been 3 years if you count from when the dedifferentiation to round cell started and the hydroceles got bad.    It’s been almost one year if you count when the pelvic tumor was removed and 8 months if you count back to the beginning of the 7 weeks of post-op radiation.   It’s been a good long while while and I have had plenty of time to research, think this through, and plan out 2019 and 2020.  Hence the “sell the house and move into an RV full time to get fixed costs down to where you don’t have to work.”.   I am semi-retired as of last month with these fancy new business cards:

 

bus cards

Regarding the three topics I have no desire to discuss:  sarcoma, selling my house and the RV.   Have you ever been on vacation to like, Key West, and when you come back during the first three days it’s interesting to tell your Key West stories at work………but then you want to just get back to work or talk about something else?   Like the Cleveland Browns?   So you don’t want to discuss Key West after a week or so?    That’s how I feel about the cancer, selling the house, and the moving full time into a Winnebago..   All three topics now bore me senseless.   I choose to not discuss those three items.  I prefer to treat each of those topics like day eight of your Key West vacation.   I will ignore all emails and texts and phone discussions about cancer because, no kidding, it bores me senseless by now.  I spent a few days last month with a good friend who has known about this cancer thing since the beginning and we spent exactly .00003% of our time discussing cancer, how I feel, blah, blah,blah.    We spent 99.99999% of the time discussing life, music, his family, my cats, the Browns, booze, how I have adjusted to being a monk, etc.   

 

If you watched Randy Pausch’s video eleven years ago, the first five minutes are where I am with discussing cancer and how I feel about…not the least bit depressed or morose..   He does an excellent job explaining it:   “we cannot change the cards we are dealt, only how we play the hand.”  That is precisely where I have been for several years and throughout the last twelve months when things heated up.

 

https://www.youtube.com/watch?v=ji5_MqicxSo&t=103s

Until this evening, there was a select group of 47 people who knew I have a high-grade sarcoma and they have all followed the rules.   They did an excellent job keeping the information private.   They know how I like to do diseases…..head down and mouth shut.   I have done 2 colon resections head down/mouth shut, two wrist fusions that way, 5 spine surgeries that way and I have approached cancer the same way.   The only reason I am sharing this now is I don’t want anyone to think I have turned into a meth head or that I am on the run from the law.  Not that there is anything inherently wrong with being a meth head or being on the run from the law.   This paragraph is not a pejorative paragraph designed to cast aspersions on meth heads or those on the run from the law. Or those meth heads who are currently ON the run from the law. 

Those of you who were in the circle of trust until this evening….bravo to you.   Thank you for keeping it between us and not bringing up cancer, selling my house, or the Winnebago for the last year.   Good job!

In advance of any requests and despite my previous love for adventures, I’ll choose “pass” on spending the weekend with anyone.   I didn’t spend weekends with anyone before I got sick and have no plans to start now.   I sleep a lot.   When I get tired, I go to sleep.  Sometimes for half a day and sometimes for three days in a row..   I don’t want anyone around when I get tired because then I feel bad saying “go away” and I choose not to feel that old Irish (ex) Catholic guilt.   Thanks in advance for wanting to get together for a weekend and understanding that I will most likely politely decline in advance.  Unless you and I had a relationship where we made out and we had a lot of fun making out and you want to make out again for a while.   I remain a fan of making out.

 

I have also chosen not to be one of those assholes like Lance Armstrong or one of my exes who runs around and screams at the top of their lungs that they have cancer or are a “cancer survivor” or that they “beat” cancer.  That does not make someone special in the 2000s.   Lots of people have cancer.  Lots of people get cancer, get through it and then move on with their lives without yammering on and on about it all the time…..millions of people.     Were it 1873, surviving some cancers would impress me.   Not these days….95% of breast cancer, 99% of testicular cancer and 99% of prostate cancer is beatable these days.     And no one “beats” cancer themselves…..their surgeons and their oncologists and their care teams do the heavy lifting.   And Lance’s was testicular cancer which is like beating a really bad cold.    Sure, it’s cancer, but the way he was running around screaming “I beat cancer” you would have thought he had a combo cancer of stage IV pancreatic cancer and Ebola.    Or that he performed his own surgery and then came up with the chemo agents to use on himself.     Maybe 17% of cancer folks ought to run around and tell people they have cancer……kids, so we can all support them……unusual cancers, so that we can raise awareness of them……and those who are terminal and doing something cool with it, like raising money for rare children’s cancers or adult cancers that do not get proper funding.   Lance and my ex had no business running around screaming about their garden variety cancers.   It takes the attention from the right places when people do that.

 

I digress.   Here is the story.  The one time telling of the story.   You and I are not going to discuss it again.   It begins in 1979 with my drunken Grandma Douglas then transitions into an interview with Natalie Imbruglia interviewing me about my sarcoma crap.   Each and every question anyone might have about my type of sarcoma is in the Natalie Imbruglia interview.   If you read through this and want to reach out, reach out about the Browns, puppies, the 2020 election, how women should be paid the same as men, etc, etc, etc.  I don’t want to text, talk or email about cancer, my Winnebago, where I am living or selling my house.   That horse has now been beaten to death, intentionally.    This is a first draft, with little thought and no editing, like everything on Mind of Mully.   Apologies to Strunk & White.

 

Oh, and I don’t want to hear about anyone’s cousin’s best friend who became cancer free by drinking only tea all day…mostly because I think your cousin or their best friend is full of shit.  They never had cancer to begin with or they had a super easy stage I cancer that would have resolved itself on its own.  Or they died exactly when the Kaplan Meier curve said they were going to die…..nine years after they got it.   It was NOT the tea or the essential oils.   I also don’t want a “fuck cancer” shirt.    I believe cancer is a natural part of aging and besides, I don’t want to have sex it. 

 

If you want to do something, buy “Misanthropes Guide to Sarcoma” when it comes out Q4, 2019 or Q1, 2020.  Buy a bunch of them.  Use “Misanthrope’s Guide to Sarcoma” at your book club.    Half the profits will go to two animal rescue places that have been part of my giving plan for twenty years and the other half is going towards a foundation that will help the disenfranchised and the dispossessed in Pacific Beach, through a pastor dude I have been working with for a while.   Here’s the cover.   You can’t miss the cover:  it is covered with pain pills and bourbon bottles.

 

you walk him_cover_nov_2018

Now THAT was a long damn intro.   Onto the story.

 memento mori

We will begin with my mom’s mom….Grandma Douglas….and her affinity for both booze and discussing her real medical problems and any medical problems that she may have thought she had but did not have.  Delivered with a lopsided grin and a stubborn sense of the absurd.

 

My Grandma Douglas drank a lot and by a lot I mean every day and all day.    Grandma Douglas was a tiny woman, but she could drink her weight in booze.   She could drink her weight in booze, plus my weight in booze, plus your weight in booze and my mom’s weight in booze.    And my dad’s weight in booze:  dad was six foot five inches and broad in the beam.. A mountain of a man.  And anyone sitting near you while you read this?   She could drink their weight in booze, too.    Grandma Douglas could drink all of that weight in booze each day.  Every day.  If I wake up super hung over once a year from a long, long night of serious, serious drinking, my first thought is “well I may have drank a lot, but Grandma Douglas drank more than that every day and she lived to seventy-five…..so I am all good.”    Grandma Douglas drank a lot.

 

Other than Grandma Douglas, Mulligans do not complain about our illnesses or surgeries.  When we had holidays, all the children would hide when mom or dad drove to the east side of Cleveland to pick up Grandma Douglas.     One of us was always chosen to join along on the ride and back then, the east side of Cleveland seemed like driving to China.   It was far, far away and in that ride back with Grandma Douglas you would hear, for what seemed liked days, each of her maladies and what was being done (or not done) to fix those problems.    When I was twelve, I made a pact with my parents to never complain about anything medical or discuss it incessantly.    This is a pact I have kept through this very day.    Unless you are speaking with your own medical care professional or a world-renowned person in that field, there is no need to drone on and on and on and on about what ails you or what surgery you just had done or whatever disease you may be dealing with.   Head down, plow through.  Other than Grandma Douglas, Mulligans do not complain about our illnesses or surgeries

 

Our family has always had plenty of cancer.   We are chock full of cancer…..littered with cancer.    My mom had colon cancer when we were kids and she was thirty-five, then got it again at around fifty-eight.  She has Lynch syndrome…I do not have Lynch and this is in no way related to her genetic misfire.   I have a translocation of the twelfth and thirteenth chromosome……a completely different genetic misfire.   Then mom got stage II pancreatic cancer two years ago.    My grandparents had cancer.   Cancer in our home was as normal as pancakes for dinner once a week.   Therefore, I’ve always believed that the question is not IF you will get cancer, it’s when.   Do you get cancer at 36, 53, 78 or 103…..   And when you do get cancer, you walk through it head down and don’t complain about it.   Like when you pull a hammy.    Walk it off and rub a little dirt in it.   That is why you and I are not going to discuss cancer….because I believe everyone will eventually get it.   Plus, we will have more fun discussing the Foo Fighters or why Tom Clancy writes awful books these days with bad writers or the outcome of the floods in Nebraska two months ago that no one is talking about these days.     Our family has always had plenty of cancer.

 

I left my long-term job in 2000 with the goal of getting my PhD at UC Irvine, until the head of that program talked me out of it one afternoon by explaining to me that for five years I would make nothing and then for ten years after that I’d make 37% of what I was previously making.    I immediately signed up for the Masters in Science in IT program at University of San Diego because the dot coms were hiring like mad and I had always wanted to be the dumbest person in each class in a master’s program.   USD’s MSIT program fit that bill.   I had time to burn before the MSIT program started so I went on a solo diving trip to Belize for a while, then I went to Nepal to learn both Hinduism and Buddhism.

 

The Buddhism lessons have always been useful, more so over the past three years.   Buddha observed and taught that one of the three fundamental characteristics of existence is impermanence. Everything changes. Nothing of mind or matter lasts forever. Every single moment changes instantly into something else.    Buddhism’s Second Noble Truth describes the principal cause of suffering. The principal cause of suffering is clinging. . . to anything at all.   Buddhism has helped with letting go of Chez Mulligan and spending the next few years chilling with my cats in a Winnebago while reading and sleeping as much as I want.

 

To keep the fact sharing more entertaining, the rest of this piece will be told as if my twenty-year crush, Natalie Imbruglia, showed up in town unannounced and interviewed me for “Horse & Hounds” magazine.   This interview should cover all the common questions about this sarcoma thing and the RV and the next two years.

 

I take an hour each morning and an hour each evening to read peer reviewed journal articles about high grade sarcoma, pelvic sarcoma, DDLS, round cell sarcoma, implications of a mitotic count of 40, implications of lymphovascular invasion being present, blah, blah, blah.   Those two hours are the only two hours per day I choose to think about sarcoma.   That’s why I choose to not have anyone else text, call, or email me about it.  Literally, ever.   Because those random texts or calls remind me I have a high grade sarcoma roaming around my body when I would rather be thinking about how I just had a great chest and tri workout.

 

Think about it this way.   Let’s say your wife left you after cheating on you with the mailman.  You came home from work early one day because the new “US” magazine was being delivered and there in your carport, your wife and the mailman were making the beast with two backs against his mail truck.  And let’s say you got through seeing that, divorced and moved on.   But then I started texting you and emailing at random times throughout the day about other people’s wives cheating on their husband with the mailman or asking you if you had gotten past your wife banging the mailman.   See how that would make you think about your wife banging the mailman when you got the text or email?   Also, no need to ask how I am.   I’m fine.   Ridiculously fine and extremely happy.   When I am no longer fine the web site I have already made for my funeral will pop up and you’ll know I am dead.   Then, you can come to the party 120 days later and trust me, it will be one hell of a party.   It’s been planned for months.

 

Here is a list of some other things we could email, text, or talk about.   The Browns, the Cavs, the Indians, your kids, my cats, the ocean, Robert Frost poems, your job, the 1099 work I plan on doing, surfing, music, concerts, a good book you read, a good book I read, a book that both of us read, that awesome person you married and/or are dating, that asshole you married and/or are dating, a great new restaurant where you ate, how the keto diet is bullshit and is pretty much a recycled version of the Atkins diet, how essential oils smell good but do nothing else, how great Mayor Pete is, what you thought about Goldwater’s masterpiece “Conscience of a Conservative”, a trip you plan on taking, a trip I just took, our favorite types of dogs, how much Wednesday sucks, the advantages to outsourcing all your laundry.    That’s just off the top of my head.   There are several trillion other topics for us to discuss that have nothing to do with sarcoma, selling my house or my RV.    Let’s stick to those.

Natalie Imbruglia’s fake questions are in bold below.   My answers are in non bolded script.    All hail Natalie Imbruglia.

natalie

You’re a little late……

 

I thought we were meeting at 7 p.m…..it’s 6:55 p.m.?

 

No, I was riffing on my song, “Torn”…”you’re a little late, I’m already tooooooorn.”

 

Oh, I get it……” the illusion never changed….into something real….I’m wide awake and I can see the perfect sky is torn”, yadda yadda.   Good one, Natalie.   OK, let’s move this along.   I have things to do and people to see.   Your time to charm me was 1994 to 2000 and 2007 to 2017, Natalie…when I had the time to date and had the hots for you.    These days I am a reborn virginal monk eunuch.    Nice try, though.

 

How are the cats?

 

Well, you know…they’re cats.   So they’re dicks.   Running around, finding dick things to do.    Cats are dicks.

cats dicks8

So, any new scars?   I like scars.  

 

Oh, yeah.   Lots more.    My abdomen now looks like the shark from Jaws had me as an amuse-bouche and then spit me back because I tasted too bitter.   Along with the previous abdominal scars from the two colon resections and the anterior lumbar interbody fusion, I have four more from this July surgery….a pretty bitching 12-inch scar that goes from my belt line to my nether regions on my pelvis, a new 10mm one above that from where they did the high ligation of the spermatic cord, a couple three-inch ones and then all the scars from the radiation burns that got infected.    My abdomen and pelvis look, to me anyway, like those lepers from the first “Papillion” movie with my hero, Steve McQueen.

 

However, as my other hero, Shane Falco, said in “The Replacements”….”pain heals, chicks dig scars, but glory is forever……”

 

If you don’t mind looking at surgery photos, Natalie, this French peer reviewed article on spermatic cord sarcomas has excellent photos of exactly how they cut me open last summer.    Good stuff:

 

https://www.sciencedirect.com/science/article/pii/S1166708718305591?via%3Dihub

 

Avert your eyes, if you’re not into surgery photos.    Those of you who have worked with me will have no problem looking at this.    They did it open because it was well integrated into the spermatic cord and surrounding tissue, so this was the incision that had to heal…waist line all the way down:

 

Screen Shot 2019-05-24 at 7.37.59 AM.png

Then, this was what healed from July on……well, “healed” because when you deliver almost 70 Gray of post op radiation to an incision that size, it sort of inhibits the whole healing process:

 

Screen Shot 2019-05-24 at 7.38.12 AM

I’d say it’s pretty well healed now.   Lots of scar tissue and that scar matches the other seven scars from 2010 to 2017, so it looks pretty cool.

So you have a lipoma?

 

No Natalie…I had a liposarcoma.  Completely different animal.    Lipomas are not cancerous and are usually harmless.   Liposarcomas are tumors that arise in the body’s fat tissue. Sarcomas are relatively rare, affecting only about 10,000 people each year in the United States…. sarcomas are rare…..liposarcomas even rarer……and a dedifferentiated round cell liposarcoma in the spermatic cord happens maybe two or three dozen times a year globally.   Say, 24 cases in 8,000,000,000 people.    If you looked up peer reviewed research on round cell spermatic cord sarcomas, there are fewer than 200 reported cases in all of the literature.   They peer reviewed pieces generally start like this here.

rarity example

Or………..

 

rarity first one

 

Any prognosis?

Prognosis of sarcomas follows histology from the path report, Natalie.  Histology predicts most everything.     As does grade, location, size, mitotic count, necrosis, proportion of the tumor that was round cell (“bad” is 5% to 25% round cell) and whether or not the tumor had invaded the vascular system, because sarcomas spread via the blood.    My tumor was in the pelvis, had an extremely high mitotic count (40…..”high” is 10), has lymphovascular invasion, was a round cell dedifferentiated liposarcoma with virtually all of it being round cell and it was greater than 5cm.   Six swings and six misses.    Hence the early retirement.

mitotic count.png

If you want to use the Google to do your own research, it’s important to know that you have to perfectly match the histology and path data.   Mine is/was a grade 3 round cell dedifferentiated liposarcoma with lymphovascular invasion present, necrosis, and a mitotic count of 40.   On the spermatic cord….in the pelvis.    The reason that is important is that DDLS in a lower extremity behaves completely differently than DDLS in the pelvis.   A low grade LPS behaves completely differently than a high grade DDLS.   Nothing that you read on pelvic leiomyosarcoma is applicable to pelvic DDLPS.   A round cell DDLPS is completely different than a spindle cell DDLPS…and so on and so on and so on.

 

Can you offer any deep dive details on what a high grade, round cell dedifferentiated liposarcoma is and how it behaves?  

 

Sure…..below is a pretty good 5,000-foot summary from a text book, not a message board.   As mentioned previously, message boards are populated by the ignorant and the criminally insane.   I have been in med-surg my entire life and no medical professional has even said in the middle or a case in the OR “so, I was on this medical message board last evening and helped out this patient.  Avoid medical message boards for the rest of your life.      Or, you can look through these slides.

 

https://www.astro.org/uploadedFiles/Main_Site/Meetings_and_Events/2015_Annual_Refresher_Course/Meeting_Program/Petersen.pdf

 

Different types of Liposarcoma have been described depending of their histology, including; well-differentiated liposarcoma (40%), myxoid liposarcoma/round cell liposarcoma (30%), pleomorphic (15%) and dedifferentiated liposarcoma (5%) each with different clinical behavior.   Well-differentiated liposarcoma is commonly referred to as an atypical lipoma or low grade liposarcoma.

Dedifferentiated liposarcoma is the least common subtype of liposarcoma and usually arises from a well-differentiated liposarcoma (WDLPS).   Dedifferentiated liposarcoma has also been defined as an atypical liposarcoma that progresses or changes over course of time with variable histologic grade. This is essentially a low grade liposarcoma admixed with a high-grade spindle or round cell sarcoma.  These tumors occur mostly in adults and tend to behave far more aggressively than a low grade well differentiated liposarcoma.  They arise most commonly in the retroperitoneum or pelvic region.

CLINICAL DATA

  • 5 % of Liposarcomas
    • Most commonly occurs in patients over 50 years old
    • No gender predilection
    • Commonly on deep soft tissue of retroperitoneum and proximal extremities
    • Progresses from WDLPS and their presentation is more frequent after a recurrence of WDLPS.
    • Up to 17% of well differentiated LPS progresses to DDLPS

CLINICAL PRESENTATION

Signs/symptoms
• Painless enlarging mass
• Can attain a very large size
• Far more aggressive than WDLPS.
• Metastasis rate, range from 63% to 97%, depending on the dedifferentiated portion, mitotic rate and histology.
Sites
• Retroperitoneum
• Lower extremities
• Upper extremity
• Trunk

Biological behavior 
• Between 13 and 47 % of patients present with metastases.  Up to 87% of high grade patients will have a metastasis.
• Grade 3 DDLPS has 17-31% of overall chance survival at five years
• Location, grade, histology and mitotic count are the most important prognosis factors.

TREATMENT

  • The most reliable means of obtaining local tumor control is by wide surgical excision. In cases of positive margins re-resections should be considered
    option whenever possible.
    • The response rates to chemotherapy of DDLPS are extremely low. Some studies show that chemotherapy is not useful as a part of the treatment and the majority of DDLS tumors are 100% chemoresistant.

“Liposarcoma is a malignancy of fat cells and represents the most common form of soft tissue sarcoma. It accounts for approximately 5% of all sarcomas. The prognosis varies depending on tumor site, size, grade, and histologic subtype. The World Health Organization recognizes five subtypes of liposarcoma: well-differentiated, dedifferentiated, myxoid, round cell, and pleomorphic. Patients with a low grade and well differentiated sarcoma have a relatively good prognosis with a five-year survival rate of 85%. Conversely, patients with a high grade tumor (e.g. dedifferentiated sarcoma) have a very poor prognosis with a five-year survival rate of 18-21%. Dedifferentiated liposarcoma (DDLPS) occurs when a low grade tumor changes and newer cells with higher grade arise in the tumor. Dedifferentiated liposarcoma is frequently found in the retroperitoneum, pelvis and the extremities (arms and legs). The etiology and the exact mechanism of dedifferentiation remains unknown. It is, however, thought to occur spontaneously due to certain chromosomal abnormalities”

So there are not many of these, then?

 

 

It is an unusual sarcoma, Natalie…hence the lack of research and dollars invested in clinical studies.    To put it in perspective, prostate cancer has roughly 110 cases per 100,000 men each year.    The number of deaths would be 20 per 100,000.    The number of round cell DDLPS sarcomas is 3 cases per million per year and the number of round cell spermatic cord sarcomas is 18 per 300,000,000.

 

Number of new cancer cases diagnosed per year in US:                     1,735,500

Number of new breast cancer cases diagnosed per year in US:          270,000

Number of new prostate cancer cases diagnosed in US per year:       238,000

Number of new sarcoma cases (all 800 types) diagnosed per year:      10,000

Number of genitourinary sarcomas per year (5% of STS):                            500

Number of DDLS spermatic cord sarcomas diagnosed per year                   28

Number of round cell DDLS spermatic cord sarcomas per year                     6

 

This peer reviewed piece from MD Anderson is why there is not a rock solid protocol for spermatic cord round cell DDLPS.   That’s one of the top cancer hospitals in the galaxy and they had 32 cases in 42 years.   It’s tough to do a lot of research when your “n” is super low.

 

rare

Sarcoma itself is an odd diagnosis, then the location of mine……pelvic, integrated into the spermatic cord…..was rare, within the “location” distribution.   Of all the locations where sarcomas appear, the male genital area has the lowest proportion.

 

Mind of mully location

 

What did you have done?

 

Well, the first surgery last summer was to get rid of the tumor.   I had a radical right orchiectomy when my doc did a high ligation of the spermatic cord north of the inguinal canal and then a wide dissection all the way down my pelvis, leaving a bad ass scar that starts at my waist line and ends just north of my special purpose.    Then, because it’s attached to the spermatic cord and needs blood flow from the vein and artery removed, he took my right ball…leaving the right side of me like Varys from “Game of Thrones”.   However, the left side of me remains as randy as Prince Oberyn.    The alive Prince Oberyn….not the crushed in head Prince Oberyn.

 

Then I had a shit ton of post op radiation every week day for weeks and weeks and weeks (August 25 to October 29) and that burned the crap out of my pelvis.  Those  burns got really infected starting in September and you cannot knock out an infection while getting radiation, so I spent October 30 to the end of November in and out of the hospital trying to get the infections under control.  The infections were pretty awful from October 1 to December 15:  you cannot knock out an infection when you are also irradiating that area every day.  It smelled like I had a dead raccoon in my underwear.   I would be sitting at my desk working and look at the cats and say “did you fart….what the HELL have you been eating……old baby diapers filled with sewage and old curry?” and they would look at me and nod down at my crotch and say “not it, pal…..not it…..”  The infection got knocked out in December and I was pretty much fully healed by February 1.    Pelvic radiation is an interesting beast.    It also makes you crap your pants and that is a whole chapter in the book.   Artfully crapping your pants…a topic seldom covered in school, by your parents, or by most major religions.

I also spent most of the fall and winter with these three therapists here.    Getting therapy and making sure my brain was well taken care of while the burns healed.

 

https://www.youtube.com/watch?v=N3dLLvsfUM8

 

I heard you sold your house.   You should not sell your house!

 That’s not a supportive thing to say, Natalie Imbruglia.   That’s like asking a couple with fertility challenges “when are you going to have kids…..oh, my….your life is not complete without kids.”   I love my place….it took two years to get to a place where I am comfy selling it.    Now, if you want to prepay the mortgage and the HOA fees and the special assessments and such for me for a year, I’ll stay.   I’ll need that pre-paid for six months, please.

 

I loved my home and had been there twenty-six years.   I planned on living in my townhouse until I was 203, because many of us Irish people are immortal, much like Star Lord in “Guardians of the Galaxy”.   He is clearly Irish.    It took a long time to decide to sell Chez Mulligan and I do not want to discuss selling it, Natalie.

 

My company was super supportive while I went through surgery and a full fall of radiation and the hospitalizations for the burn infections after radiation ended.   Working full time wore me out.   I’m not doing it again as this recurs.    Selling the house allowed me working capital to not have to work when this comes back, which it will.    That’s a full stop on the house selling topic, Natalie…let’s move on.

Sorry about that.    Have you made any lifestyle changes?

 

Yes.   I have started eating bacon with literally every meal and sometimes in between meals.  Sometimes I’ll set an alarm, wake up at 3 a.m. and eat some bacon.  And  although I quit smoking thirty years ago, I may decide to take it back up in the fall and hope to get up to five packs a day by Christmas.   Because….why not, and smoking is fun because….again…..why not.    I may start tanning in a tanning booth six or seven times a day and might also insulate my Winnebago in asbestos.

 

I bought four new pair of various models of UGG boots in the first quarter and sixteen pair of comfy pajama bottoms and plan on dressing like and living like The Dude from “Big Lebowski” for the next year.   Because I have a lot of scar tissue in my pelvis around my belt line, regular pants and belts hurt and, most important, because The Dude abides.   “I don’t know about you, but I take comfort in that. It’s good knowing he’s out there. The Dude. Taking it easy for all us sinners.”

 

Oh, and I pretty much give the cats treats whenever they ask for them these days.   Several thousand times a day.   Good thing I did not procreate because had I procreated I would probably be saying to the kids “well, we NORMALLY do not condone crack smoking and heroin use in the house, but we may have limited time together, so you do what makes you happy…..I want to see you guys smiling.”

Do you have a bucket list?

 

Nope….I don’t have one.   Now that I have got to hang out with you, Natalie Imbruglia, I have done everything I have ever wanted to do.   I have lived a purely hedonistic, selfish life for decades and have no sort of bucket list.  I am good to go whenever.    I’ve been to forty-seven countries on five continents and all fifty states, which is pretty good for a kid from The Land of Cleve.  I have been fortunate enough to throw around “I love you”s with some ridiculously cool women and have also been fortunate enough to have a stable of brilliant and hilarious friends.   I could have been hit by a bus five years ago and still have

 

And for the love of whatever deity there may or may not be, Natalie Imbruglia, don’t ask people with cancer if they have a bucket list.   It’s trite.   Like asking a new parent if they are getting enough sleep.   Don’t be trite, Natalie.   The world does not embrace trite.

 

Final note on “bucket lists”.    Everyone’s theoretical list should be identical….one line….”to have loved and been loved”.  That’s it.    As mentioned previously, I have been able to do both of those:  those boxes are checked with a thick black Sharpie, making me good to go…whenever I choose to go.

 

Speaking of deities, I will pray for you

 

No need, Natalie…..I’m good….I have science and medicine and such.     More importantly, the corollary of what you said would have to be true.   If you believe whatever deity you believe in can cure cancer, then that deity also probably GAVE the cancer.   I find it hard to believe that any potential deity would either give someone cancer or remove the cancer…..so no need to give me any of your prayers.   Save them for the disenfranchised and the dispossessed.    Same them for those who get shot in schools……just kidding….prayers do not stop people being shot in schools.   Tightening who can have guns stop people from being shot in schools.

 

Why did you keep this on the down low for so long?

 

Good question, Natalie Imbruglia.   A couple reasons.   First and foremost, for the first couple years I had no idea what it was….thought it was Hodgkins lymphoma for a long time because of the night sweats, the fatigue and the unexplained loss.   But there was also unexplained weight gain….I’d swing 30 up and 30 down for no reason.   Same 2100 calories a day, same mostly vegetarian diet, same 90 minute work out.   I’m data driven and did not want people guessing and suggesting essential oils would cure me.

 

Then, when we knew it was a high-grade sarcoma, unless someone was a world-renowned sarcoma specialist or an oncology surgeon, there was no reason to discuss it with anyone.   I told some, but not all, of my work colleagues because I was unable to travel from July through the end of November.  I told my family, but only after we had the fourth opinion on the path report.   I told my close friends who live in the medical/surgical world and are not going to ask “did you think about holistic treatment for your grade 3 round cell sarcoma with a mitotic count of 40”.   That is tantamount to suggesting they jump off a tall building.

 

And I told those who I was fortunate enough to throw “I love you” back and forth with over the last forty years.    Except the girl at Catholic summer camp in eighth grade because I never got her last name and forty years later I am beginning to doubt if that was true love.   It sure felt like it at the time.    And I told my dry cleaner because we are tight and the people at my UPS store where I get my mail because we, too, are tight and I trusted them to keep this on the DL for the last few years.   Hmmmmm…and three random strangers I knew I would never see again.   And my realtor and the people at the RV place….I emailed them in October when this plan to sell the house and move into the Winnebago Sightseer 36Z went into motion.

 

A grand total of forty-seven people from April, 2018 to April, 2019.  Over the past forty-five days I have told another dozen, in anticipation of finishing up this piece here.   That’s how I parsed each and every question that might be asked:  I would jot them down as they came.

I told the Pan-duh-Beeeeeeear because he has an advanced degree in round cell DDLPS research.    He’s been helping out.

 

BC18E47A-798A-4CDF-964E-C532147D5D7D

Most of all, I told people who I knew would not share the story, because it is my story to tell to whomever I choose, when I choose.   Which is now.   I carefully chose people who really know me and know that I have no desire to discuss cancer all the time or talk on the phone.   I hate talking on the phone for more than three minutes.  If you tell people you have cancer, all of a sudden your phone starts ringing nonstop and people want to yammer on and on about cancer…which is a pretty boring topic.  Having to talk on the phone for more than three minutes or having to talk about the same damn thing all the damn time is actually, in my book, worse than the cancer itself.    Imagine having the SAME conversation four hundred times.

 

Finally, one of my pet peeves is when I see people co-opt someone else’s story on their social media, Natalie Imbruglia.   When I see someone post “just found out my friend Bob has cancer…..oh my.” It makes me throw up in my mouth.  Unless Bob specifically said “hey, go ahead and post about my disease on your social media, odds are you’re trying to get some attention.  If you need some attention, get a puppy.   The fewer people I told, the lower the odds that someone chooses to co-opt my story, which I don’t even want to share.   Were it not for worrying about people thinking I all of a sudden got hooked on meth, I would not even share this

We have heard tell of a book?

 

Definitely.   That is why we are here!   I’ll be finishing “You Walk Him & Pitch to the Rhino:  A Misanthrope’s Guide to Sarcoma” some time in 2019 and get it published in time for Christmas.   There are a ton of first-person books on dealing with cancer that are all “rah rah” and “turn to prayer” and stuff like that, meaning the “sarcastic and snarky” niche is wide open for me.    Grand canyon open.    You want to hear about my sarcoma?   Buy the book when it comes out.

 

And….what’s in it?

 

If you have ever read Dimitri Martin’s “This is a Book”, it’s a lot like that.   There is one chapter that is all Venn diagrams and no cancer content.   If you are a fan of Venn diagrams, as I am, you’ll agree that each and every book needs a Venn diagram chapter to break up the book.   For example, most people believe the Bible is the best book ever written.  You know what would make the Bible better?   Venn diagrams, right between “Judges and “Ruth”.  The Old Testament is dark and scary:  you put some Venn diagrams in there and BOOM….people will want to read the Old Testament.   Venn diagrams would make the entire monkey and the man with the yellow hat series better, they would make the Hardy Boys mystery novels more interesting and they would greatly add to the “Game of Thrones” books.  Think of Tolstoy’s “Anna Karenina”, the desperate showdown between Anna and Vronsk where she has flung herself under a train in morphine-fueled despair and we are left wondering how this impacts her brother Oblonsky, his wife and her best friend Dolly.  You know what would make that section less….desperate?   Less dark?   Venn diagrams.  Venn diagrams make everything better.

 

Then, of course, there are the things no one ever talks about.  Like crapping your pants.   If you get high doses of pelvic radiation, odds are you are going to crap your pants at some point.    If you get high doses of post op pelvic radiation and you’ve had two colon resections before the cancer diagnosis, you are definitely going to crap you pants and there are no other books that discuss how to properly and artfully crap your pants during radiation.   This book does that, with aplomb.     And dating.    And how you should not act like at asshole from “PS, I Love You” and come back to haunt your ex every ninety days with love notes….just when they got over you.  You are dead:   leave your ex alone, for crying out loud.   Let them move on and get laid.     It may be the finest and most practical first-person cancer book out there.   It has real information and the proper amount of sarcasm and snark.

 

Here is the book cover.   I like it.    Bourbon, half my hospital wrists bands from 2016 to 2018 and lots of pills.   Captures the essence of 2016 to 2018:  the only thing it is missing is a cat.

you walk poster 1

How did you come up with the title?

 

Well, Natalie, I had to wait a long, long time to get the path report back:  it counced around for a while.    So my surgeon calls and tells me that he wants me to come in and I say “dude, just tell me what’s up” and he walks me through the histology, the grade, the mitotic count, the necrosis, the lymphovascular invasion, yadda yadda.   And as he is doing that I am taking notes and looking up the Kaplan Meier curves.

 

After we hung up, I had a screen full of Kaplan Meiers and I looked at the cats and said to them “you’ve got to be joking…..”.  Then I copied the elevator scene from “Hot Shots” and replied “no, if I were joking I would have said ‘what do you do with an elephant with three balls?   You walk him and pitch to the rhino.”   The cats neither got the joke, understood the movie reference or cared about the Kaplan Meier.    Because they are cats.

 

 

 

 

kap-meier_ddls_5

kaplan meier mixoid lipo5.large

Kaplan-Meier-survival-curve-showing-patient-survival-without-development-of-metastatic

 

Then, I have an MDM2 amplification and a pretty significant CDK4 amplification, so that generates curves like this……..

 

Screen Shot 2019-05-24 at 6.26.59 AM

Screen Shot 2019-05-24 at 6.26.46 AM

Screen Shot 2019-05-24 at 6.27.14 AM

 

And it was relatively clear from the beginning that chemo does not work on DDLS, which makes drawing the wire diagram on “should I try chemo” super easy to draw.   You just draw the box “will it work on DDLS?” and then just one branch off of that to “no”.   Then you move on.    Makes it super simple to make choices based upon that.

 

Screen Shot 2019-06-03 at 11.33.55 AM.png

 

You get the idea……The Google has plenty of these.   Just stay the hell away from sarcoma message boards.    Like all medical message boards, they are populated by non medically trained morons.   Like Jenny McCarthy and her anti-vaxxer/pro plague friends.

 

 

Any fun radiation stories?

 

Sure.  There’s a whole chapter of good stories in the book, aside from the chapter that is dedicated to crapping your pants artfully.    Pelvic radiation, especially seven weeks of it, is interesting.   Because of the other things that are near there.   Like your private parts.   And your legs.   And your colon.   And your bladder.    But just the one story here….the story about how I got a smoking deal because of my Amazon Prime membership.

 

Three weeks into seven weeks, I noticed that even after relocating my private parts to the left after laying down in the machine thing…which was really just a mental thing and didn’t matter to the radiation machine, I got a great idea.   A lead jockstrap.   So I ordered a jockstrap that came with a cup and a sheet of 3’ by 3’ lead on Amazon.   Called Stevie JC, asked him to stop by over the weekend with tin snips and we were going to make me a lead jockstrap.   On Friday, when the radiation techs asked me what I was doing over the weekend, I replied “making a lead jockstrap”.

 

They explained that while I was free to make myself a lead jockstrap, since I was adding something to the field, I would have to have a new planning session done and that would take a week.   And they would have to resubmit to Blue Cross and that might take another month.   Since that would have screwed up my schedule of Aug to Nov (radiation), November (heal) December (heal), January (get house ready to sell), February/March (sell house)…..I didn’t make the lead jock strap.

 

If you’ve never ordered a 3’ by 3’ lead sheet, you cannot appreciate its weight.   It weighed 43 pounds.    Amazon shipped it next day because I am a Prime member.    Meaning this not  story about a lead jockstrap, it is a story about how last fall I more than made up for the Amazon Prime membership fee in a single transaction.

Anything you have found annoying?

 

No.  I didn’t really tell anyone, so I didn’t have to hear all that “you’ll beat this” horseshit.  Although, as an aside, saying “you’ll beat this” or “you can’t just give up” are two of the things not to say to someone with a rare, chemo resistant sarcoma.    Neither of those is up to the sarcoma patient…..they are up to the histology of the sarcoma and the chromosomal translocation.    I’d pretty much avoid those with any cancer patients, but you do whatever makes you happy, Natalie.  Here is a pretty good primer on how to deal with sarcoma patients.

 

Regarding the “you’ll beat this” horseshit.    I’ve said it for years and I’ll say it again here to you, Natalie Imbruglia, there are two things to say to anyone going through a cancer thing…these two things:

 

  1. Can I do anything for you?
  2. If there comes a time you DO need anything, will you call me?

 

That’s it.  Full stop.    None of that “you’ll beat this” crap, none of that “stay strong”, none of the prayer things, unless the person is religious.     Think through that behavior of saying “you’ll beat this thing” to someone who is not going to beat it……then you put it on them.   When they’re on their death bed, they may be thinking of you saying “you’ll beat this thing” and think to themselves “man, I sure fucked up and let so-and-so down because I did not beat this thing.”

 

Here’s a quote from a pediatric oncologist who deals with cancer every hour of every day:

 

“Fighting/war language is not helpful when you are talking about cancer. If you set yourself up for a war with cancer and it doesn’t respond in the way you had hoped, or it relapses, then you have to talk about “giving up” or “throwing in the towel.” If a person dies, it doesn’t mean that cancer “won.” Instead, if you frame it differently from the beginning, you can allow someone to change the goals of care in a dignified and courageous manner.”

 

I chose my goals of care and explained them to my doctors and family.   I wanted to get through the surgery, get through the post op radiation, then heal and see how rapidly it came back.   Then…get rid of most of my belongings, sell the house, quit working full time and have a year or two of unfettered “retirement”.  I have executed on all of those, Natalie and will continue with the unfettered retirement through the relapses, on my terms.

 

If you watched “Top Chef”, you are familiar with Fatima Ali.   She died of Ewing’s sarcoma earlier this year.   My first two path reports in August, 2018 came back with “Ewing’s-like round cell soft tissue sarcoma” before being properly interpreted by Sloan Kettering in September.    While I do not have Ewing’s and mine is not bone, it is a kissing cousin of Fatima Ali’s, which is to say that it is unpredictable in when it comes back and sometimes when it comes back it takes you out fast.    That is why I am choosing to run this offense for the rest of 2019 and 2020.  This is my version of “fighting” and this is the goal of my care:  to do whatever the hell I want to do every day for as long as I am able.

 

Quote from a doctor who went through cancer herself who got sick of people saying “you need to fight” to her:

 

“I can tell you that I just glazed over when people said to fight. It was one of the most passive times in my life—just doing what was recommended. I needed fortitude, resolve and support…but fighting was way out of my capability…Every person experiences cancer in their own way. Insistence on “fighting” is not respectful of the patient’s right to make decisions that they choose.”

 

None of that “have you tried a cleanse?”, “have you looked into holistic healing?” or any of that crap, either.   Unless you want that person to die.   If you actually WANT that person to for sure die.  suggest that they look into holistic therapy for something that actual medicine works on.   If you break your leg, do you call a shaman?   If you cut an artery, do you look into yoga for that or rub essential oils on the cut artery?  No.  You find a damn doctor……  James Fell wrote this excellent piece:  “shut the fuck up about your bullshit cancer cure” about that topic.

 

https://www.bodyforwife.com/shut-the-fuck-up-about-your-bullshit-cancer-cure/

 

And for the love of whatever deity there may or may not be, unless you are married to that person, it’s none of your damn business what treatments they choose to get or what clinical trials they may want to look into.   You know what’s expensive?   Clinical trials.  You know who knows that clinical trials may exist?  People with a cancer thing going on and their doctors..  You know when they know that?  The first day they sit with their doctor and discuss their cancer.  You have two questions you can ask.   These two, Natalie Imbruglia.   Write them down:

  1. Can I do anything for you?
  2. If there comes a time you DO need anything, will you call me?

And while I can only speak for me….don’t force yourself on anyone.   These days I like to sleep a lot and can only be “on” for maybe an hour or two.   And the radiation destroyed all my pelvic lymph nodes from August to November last year, so I get pretty bad pelvic lymphedema that comes and goes.   When it comes, it makes my scar tissue hurt and the only way to get it to go down is to lay down…..and if I am solo I can lay down whenever the hell I want.    Plus, I like to do pain in private and I still have a lot of pelvic pain.   I let the cats around during the pain….I’m cool with them seeing it.

So when you leave here, Natalie Imbruglia, don’t invite yourself back for a weekend, or even a night.   I make my plans day to day and it makes me oddly uptight to hear “well, then, we NEED to spend a weekend together.”  No we don’t.   We have had plenty of weekends together….let’s just remember those in a positive fashion.

 

Well that was quite the soap box speech, Dan

 

Yeah, well, I am opinionated.   And ridiculously verbose.

 

And your baby blues make this room pop.

 

Thanks, Natalie Imbruglia.

 

You seem to be having a good time with this.

 

Indeed.  I always have a good time, Natalie.  You would have known that years before now had you accepted my invitation to dinner.   I’ve laughed about this as much as everything else in my life.  In fact, I made my radiation thingie into a cat bed and Ceeeeeeeatie loved it.   Check it out.

radiation_pants

 

 

radiation pants cat bed 7

And Steve and I had a wake for my spermatic cord and right testicle after he picked me up from the hospital last July.    At the West End.   That was a good time.    And there was cake.

 

surgery wake 2

surgery_wake 3

 

Oh, and he visited me in the hospital in November and brought me booze.   I can always count on Steve to bring me booze when I am hospitalized.

hosp_steve_table

 

My cousin’s friend’s uncle had cancer:  do you want his number?    And he used essential oils and CBD oil to cure it.   You should look into that.

 

Oh, I know you know someone who had cancer, Natalie Imbruglia.   We all do.   We all know someone who had cancer and now does not have cancer.   And we all know someone who had cancer and died from cancer.   No need to tell me about who you know that had cancer.   I know PLENTY of people with cancer, in fact, I have had cancer for quite some time, and I know me.

 

And your cousin’s friend’s uncle did not “beat” cancer with CBD oil or essential oils.   Your cousin’s friend’s uncle either never actually had cancer and he/she lied about it……or…..your cousin’s friend’s uncle had an easy cancer to get rid of (like stage I or stage II breast cancer….or testicular cancer…..or something that has a 99% cure rate in stage I or stage II) and the surgeons and oncologists took care of the problem and THEN your cousin’s friend’s uncle spread essential oils all over their body after it was already gone, because they are an idiot.   I don’t need to hear about anyone’s cousin’s friend’s uncle and their miraculous cancer cure.   Thanks, though…..I’ll stick with science and medicine.

 

That’s why I have not told anyone for a long, long time.    I don’t have time for that crap, Natalie.

And I have read virtually 100% of the peer reviewed journal articles on male pelvic sarcoma, urogenital sarcoma, DDLPS, round cell DDLPS, prognostic aspects of grade and histology, yadda yadda yadda.   And highlighted them.   And cross referenced them with their bibliography and reached out to the authors for updates.   I have had plenty of time to do the real research, Natalie:  I do not want to speak with your uncle.   Unless he is a world class pelvic sarcoma researcher.

 

mind of mully peer reviewed one

That’s just one folder.   There are three (3) folders of research.  Tyrion is good at drinking and knowing things.   I am good at drinking and looking up and interpreting peer reviewed research.   And, of course, not a single screen grab from a message board.   Because message boards are chock full off bullshit.  This folder here is just from January this year to today:

Screen Shot 2019-05-12 at 7.00.40 AM

 

Are you going to die?

 

We are ALL going to die, Natalie.    That’s the way things work.    Except Thor…although I think he can die, too.   I’ll have to check on that.    With the way I partied in the 1990’s and the way I drive and the solo trips I have taken to countries in the middle of coups, it’s a wonder I made it to 53.   I count everything from 2002 on as bonus years.   Icing on the proverbial cake, Natalie Imbruglia.

 

If you want to know the probabilities, this graph is pretty good.  Histology, grade, size and location are all predictive.   On this graph, mine is the DDLPS Grade III…the bottom line.   40% of people die in the first year, so I have beaten 40% of the peeps with this…winning.    60% are gone in the first two years, if you average all the studies and input histology, location, grade, yadda yadda.

 

As stated several million places in this piece, I believe wholeheartedly in medicine, science and peer reviewed research.  If you average out everything, the sharp drop off is by the end of year two, then it levels off and you have roughly 5% of people alive at 5 years.   So I am going to treat the next two years like I am retired…do whatever I want to do, whenever I want to do it…..and then at the end of 2020 we will see where we are.   here are some more numbers:

 

MofM you're going to die?

 

Kaplan-Meier-life-table-analysis-of-event-free-survival-of-high-grade-soft-tissue-sarcoma

So, what’s next medically?  

 

Nothing, really.   For the most part, round cell DDLS is chemo resistant.   There’s one chemo agent that “works” on it and the italics are intentional.    “Works”, meaning it “works” in 8% of those who take it.   So you feel like crap every single day…day and there’s a 92% chance it will NOT “work”.    You won’t know if it “works” until, like, six to eight months into the treatment and we are talking about an overall survival of eight to twelve months when the mets start getting really active.  Oh, and when it “works”, you get an extra couple months…..two extra months to feel like crap each and every day……..so, I’m not doing that.  I’m done.   I am not going to choose to feel like crap every day for 6 months to get an increased PFS or OS that is measured in weeks, not years.   I’m done.  Most important, I am utterly at peace with that choice.

 

chemo example one

Below is a typical paragraph in a peer reviewed article on chemo for round cell DDLS.   Lots of toxicity, response rates lower than 15% and super low impact on time to progression.   You may as well use essential oils.    See what I did there?

chemo_part two_do YOU want this?

“Because of the significant toxicity and limited response rates of doxorubicin-based combinations, efforts have been made to find more effective and less toxic alternatives. In clinical practice, an often-substituted alternative to single-agent doxorubicin is liposomal doxorubicin, which offers similar response rates but a favorable toxicity profile. In a phase II study comparing liposomal doxorubicin to doxorubicin in soft tissue sarcoma, liposomal doxorubicin showed decreased adverse events including less myelosuppression and cardiotoxicity (Judson et al., 2001). Response rates were similar between the two arms (14% in liposomal doxorubicin vs. 12% in doxorubicin, excluding GIST cases), although this study has been questioned due to the relatively low response rates to single-agent doxorubicin. Median time to progression was slightly improved in the doxorubicin arm compared to liposomal doxorubicin (82 days vs. 65 days, no p value reported).”

Interpreting that…the “standard of care” works in 12% of people.   In that study, versus the “standard of care”, it worked in 14% of people instead of 12%.    In my thirty years in surgical, with many years of using or running teams that did peer reviewed research, numbers like that would get you laughed out of the room.    “Good” numbers in a study are “it worked in 75% of those in the study”.    And extra 2%?    That’s laughable.   And the median time to progression increased when it DID work by 12 days.    12.   Days.     That is what passes for “works” in my histology of sarcoma.

Given the DDLS histology high grade and location, there’s a 93% probability it will return locally in my pelvis in the first two years.  Given the histology, grade, mitotic count and lymphovascular invasion noted on the pathology report, there is an 87% chance it will metastasize.   Given the round cell component, it can metastasize to the lungs, bone or soft tissue.   So we’ll just wait for that and make some decisions at that time.   Until then, I’ll be reading a lot, drinking good bourbon and getting some sleep.    This is my Mayo care plan that I am working through, given the chemo resistance of the round cell DDLPS:

mayo 2

In order to execute on that care plan, I sold Chez Mulligan and moved into a thirty-seven foot Winnebago full time on May 1 to get my costs down to a far lower, fixed amount.     I’m not looking at it as any type of adventure.   I am looking at it as a place to relax and the only thing you can live in with three cats while keeping your fixed costs less than $3,000 per month.

 

You getting buried or burned?

 

Great question……burned, for sure.   That’s all planned out.   In fact, I spent since last fall lining everything up and it’s going to be an excellent party.  Funerals and memorial services are for the living and this one will be world class.    Since the party will be in San Diego, it will be a Saturday…… 90 to 120 days after I kick the bucket so as to allow people time to plan a good little weekend vacation.    Everything is all dialed in and paid for already…..so people just need to get to San Diego and then have a good time.

 

And I already had the urn made.    Well, the urn container.   My ashes are going into that great big Bulleit bourbon bottle…a bottle that I already drank.   And I found this guy in Kentucky to make the box for the urn and had him put my favorite Archpoet lines on it.  These ones:

 

Meum est propositum in taberna mori,
ut sint vina proxima morientis ori.
tunc cantabunt letius angelorum chori:
“Sit Deus propitius huic potatori

 

Which, loosely translated, is:

 

“My purpose is to die in a tavern,
so that wine might be close to my dying mouth.
Then a choir of angels will happily sing,
“May God be merciful toward this drinker.”

 

Turned out pretty good:  the photo below is the exact Bulleit bottle and the box.   Fire up will be at Latitude 32 on Cass Street, then the church service will be at PB Christian (a block from Latitude 32) and then there will be two busses to take people to the after party at the San Diego Museum of Man, where there will be more surprises.   Three days after I kick the bucket my friend Steve will publish the web site that is already built and then people can make their plans.

urn 2

urn 3

 

Back to your question.   Burned……definitely burned.   I’m still trying to make friends with someone who works in a B-52 because I’m putting some of the ashes in these tiny half note things and a dozen of my friends who love music as much as me will be tasked with bringing a small part of me to concerts for the next few decades.   But I would love to have someone who works on a B-52 and circumnavigates the globe take the rest and on a trip sprinkle just a little bit of ashes the whole way around the world……that way I will be EVERYWHERE.    You know anyone?

 

Sadly, Dan, I do not…..but I will ask my friends.

 

Thank you, Natalie Imbruglia.

Anything anyone can do for you?

 

Yes.   For the love of god, STOP….SHOOTING…..VERTICAL……F*CKING…VIDEOS.    Just stop.   Never, ever, ever, ever shoot a vertical video.    I don’t want people to start checking themselves for cancer and such, I just want them to STOP….SHOOTING…..VERTICAL……F*CKING…VIDEOS.

 

When you record a video with your phone, turn the damn thing horizontal.    It is meant to be horizontal when you shoot video.   I don’t give a damn that it looks OK on your phone, when you put it on anything else that is NOT your phone there are gray bars on the left and right when you do it wrong.   Those gray bars are the universe saying “hey, *sshole….quit shooting vertical videos….they look like crap.”

 

If I could get everyone to turn their damn phones in the correct orientation….horizontal…while shooting videos for however long I have left, be it one year or three, that would make my years more comfortable.    Then I will not have to click on “hide this post” every time I see those stupid gray bars framing a video on FB”.   And I won’t have to yell “TURN YOUR DAMN PHONE SIDEWAYS TO SHOOT VIDEOS…..IT LOOKS LIKE CRAP WHEN YOU SHOOT VERTICAL VIDEOS” at my Mac.

 

Fewer people will die of cancer if everyone stops shooting vertical videos,

 

That statement is as true and saying that diet, yoga, essential oils or any of that other holistic crap will cure sarcoma or most cancers.   And has as much data to back it up.   I lied.   Fewer people shooting vertical videos will not cure cancer or prevent cancer, however, it will prevent stupid gray bars on the right and left sides of posted videos on social media.

 

Oh, and elect a woman as President in 2020, for crying out loud.    It is ridiculous that we have not elected one yet and given statistics and medicine and science and such, this is probably my last chance to see a woman take the oath of office.    So, quit shooting vertical videos and elect a woman as POTUS.   I have everything else under control.

 

I was just kidding.   You said up there that you didn’t need anything.

 

Game, set, match, Natalie Imbruglia.

 

Anything frighting about the last few years?

No.   Not so much.   As we discussed earlier, we’ve had a lot of cancer thingies in our family and the outcomes are pretty well binary……you live or die…..and I am quite comfy with either of those.    I never bought into that “hell is a possibility” as an afterlife thing so there’s no fear there.

There is one thing I am extremely afraid of, though.

 

And what is that, Dan?

Bears, Natalie Imbruglia.   Bears.   Bears will fucking kill you.

 

 

bears

 

 

What sort of RV are you living in?

 

I researched all last fall and winter and decided I wanted one with a king bed, two bathrooms, plenty of televisions, a residential fridge (I eat mostly fruits and vegetables) and one with an open floorplan.   I ended up purchasing a 2016 Winnebago Sightseer with 15,000 miles….so all the bugs were already worked out.    Here is a walk through video of it.

 

https://www.youtube.com/watch?v=O6oI3ob7X3M

 

 

Then, I had the RV place put in the best DISH on top and the top of the line 4D receiver and repeater, because I plan on watching just a shit ton of TV.    And I had a company up in Anaheim replace all the furniture inside with brand new leather furniture.    This is what it looks like now.    It’s a most excellent transient Chez Mulligan.

 

home

 

RV maureen

 

Where are you going next in your RV?

 

Wherever I want.     I am not planning it:  I am simply choosing a place where I can stay for 6 to 8 weeks in a row that is pretty and has full service hookups and I can walk to town and to a gym.   On the west coast, near something pretty, be it a mountain or an ocean and only in CA, OR, NV, UT, AZ or ID.   Just those five states.   Then, five weeks into that trip, I’ll pick the next place.   There is no agenda and I don’t want to be asked what the plan is,.   There is no plan….that is the plan.   I want to live in the present and also don’t want to answer the same five questions over and over and over.

The five off limit questions for forever and ever are:

1.  Where are you now?

2.  Where are you going next?

3.   How long will you be there?

4.  How are you feeling?  (awesome)

5.  Are you SURE you don’t want to try chemo or look into holistic?  (positive….neither will work).

I am headed first to Kanab, Utah…..you can look it up on The Google.   For years the Best Friends animal sanctuary has been part of my annual giving plan and I am going to volunteer for six weeks there, rotating through doggies, cats, horses and pigs.   Selling the house made me miss foster kitten season for the first time in twenty years, so I’ll make up for it at Best Friends.

 

After that I will pick a new place on the left coast every six weeks or so with Reliable driving my house for me and me driving the Dodge.    Cats ride with the driver in the Winnebago…..I drive on ahead, as fast as I want, stopping whenever I want.  Again, with no plan.   And only on the left coast.   Only qualification is the campground has to be close to a gym, near an ocean or mountains and it has to be full service and uncrowded.   Misanthropes hate crowds.

 

Are you comfortable driving a thirty-seven foot Winnebago?

 

I have no intention of ever driving my RV.  I am outsourcing that and found a great company made up of retired police officers.   I pay them, they show up and drive the RV and the cats while I head out in advance in my Dodge.   The Dodge goes 100 to 160 mph on the open road:  I doubt very much the Winnebago ever gets over 60 mph.   I am outsourcing and I love the company to whom I am outsourcing the task.   They are utterly fantastic people.

 

You know they are not that hard to drive.

 

Don’t care.   Made my mind up months ago to outsource the RV driving:  plan your work and work your plan Natalie Imbruglia,. I don’t ever want to get good at driving an RV and I don’t have to get good at it.   It’s simply a place for me to live at a super low fixed cost, four to six weeks at a time, in random places I choose on the left coast.  You do you and I’ll do me, Natalie Imbruglia.

 

 

Can I come spend a weekend with you or ride around in your RV with you?

 

No.  That’s not on the table for anyone and will never be on the table for anyone.   As big as my crush has been on you for 23 years, Natalie Imbruglia, I don’t want to spend a weekend with you.    I get tired pretty easy and really don’t know what my energy levels will be from day to day, so I am not going to spend “a weekend” with anyone.   In order to go out with friends for a night, I generally nap for 4-5 hours ahead of time and if we are out past 9 p.m. I’ll sleep for two days after.

 

As for riding around with me, when I was married to Penny I would go to a different floor of the townhouse to pee……..I have level four stage fright.   There is not an ice cube’s chance in hell that anyone is driving around with me in my RV or staying with me in it, despite the fact it has two bathrooms.   The RV has one purpose:  get my fixed costs down to $3K a month so that I can sleep whenever I want.   It’s not an adventure mobile for group road trips.   Misanthropes avoid group road trips.

 

It’s kind of you to ask, Natalie, but it makes me uptight to have to keep saying “no” to people who want to spend a weekend with me and I’d rather not keep having to say that.   And I’ll also say “no” when people say “oh, if you’re tired you can just sleep…it won’t offend me” because it’s going to make me feel guilty if someone comes to visit and I feel like crap at that time.   Irish Catholic guilt:  the worst kind of guilt.   So….no…..and thanks for asking.

 

We should have a party in your RV!

No, Natalie, I will not be entertaining in my RV.    The RV is set up for me and my cats to have quality time together and for me to relax and sleep.   It is not a party venue.   I am worried only about one thing…my cats escaping the RV.    They are chipped and have collars, but they are crafty.   Plus, cats are dicks.    I know for a fact that if only Daniel C Mulligan is going in and out the door that no cats will escape:  however, I do not trust anyone else to make sure my cats do not escape.   Therefore, I will not be entertaining guests in the Winnebago.

Anything else you’d like to share?

Just a summary on moving forward.    I believe in science and outcomes-based medicine…..which is to say I think holistic things are complete bunch of crap.    If research is unable to find some sort of gene suppression therapy down the road, charlatan “holistic” morons certainly are not going to come up with cures for sarcoma.   I had the following rules with my sisters and the small circle of friends with whom I have shared over the past 18 months and these are the rules.   I’d like everyone I know to please stick to them.

rules

 

Some folks have said “I’d like to join you in your RV.”    As mentioned above, I will always respectfully say “no thanks” to that request one hundred percent of the time.     When I was married and had to go to the bathroom, even number one, I went to the floor that my wife was not on.  The RV has two bathrooms, on the same level, sixteen feet apart.  I do not want stress when I want to go to the bathroom.  I’ll be spending 100% of my RV time with my three cats, living a monastic, non-dating, eunuch-like, single life.  Hence the name of the book…..”a misanthrope’s guide”.  Plus, as we discussed earlier, the RV choice is not for adventure, it is the single best way for a person to reduce their fixed monthly costs to a minimum.   Had I not married, I would have spent the next two years on my deck in la Jolla, reading books, drinking bourbon and smoking pot.

 

 

Summary:

 

 

  1. There are high grade sarcomas that do not respond to chemo or radiation.
  2. This is one of those sarcomas
  3. Yes, I’m sure.
  4. Super sure…..I have done two years of research and I am super good at research.
  5. Those two years and the research have made me super comfy with this whole thing.  Zen even.
  6. It’s not my job to make anyone else feel comfy about it, so that’s on you to do yourself, Natalie.
  7. There is no “what is next”…….because there is nothing else to do that will actually add to overall survival.
  8. Please don’t ask “now what”. It’s sort of rude and none of your business.
  9. Don’t suggest “holistic” crap.   You may as well tell someone to hold their breath under water for eleven minutes.  Same outcome.  Fastest way for a cancer patient over Stage II to die is ignoring medicine/science and going “holistic”.

 

round cell sarcoma

Here are some more links.   If you feel like using The Google, again…..sarcomas are a super heterogenous group and you have to only apply things that are the same.   Grade 3, dedifferentiated round cell liposarcoma of the spermatic cord with lymphovascular invasion…..it had a mitotic count of 40 with necrosis and it was roughly the size of an orange….6cm X 5 cm X 4 cm.   And the round cell component was roughly 90% of the tumor:  “no well differentiated liposarcoma component is noted” (fourth opinion…from Sloan Kettering….September 3, 2018).  It was mostly all round cell.

 

It started as a far smaller well differentiated liposarcoma in 2015 with the primary presentation being testicular hydroceles.   The 2018 tumor was removed with a radical right orchiectomy, high ligation near the inguinal canal.  All questions are answered above with deeper links below….. and if you have any more questions, The Google is waiting for you.

 

 

https://www.theatlantic.com/family/archive/2019/02/my-wife-and-i-didnt-tell-our-children-about-her-cancer/582709/

 

http://www.enzolifesciences.com/science-center/technotes/2016/december/advances-in-the-treatment-of-dedifferentiated-liposarcoma/

 

 

https://www.astro.org/uploadedFiles/_MAIN_SITE/Meetings_and_Education/ASTRO_Meetings/2017/Annual_Refresher_Course/Content_Pieces/Sarcomas-Baldini.pdf

 

 

 

https://www.onclive.com/peer-exchange-archive/sts2-therapeutic-options/efficacy-and-toxicities-with-trabectedin-in-sarcomas

 

 

http://www.motorhome.com/top-stories/escape-vehicle/

 

 

https://sarcomaoncology.com/six-common-types-soft-tissue-sarcomas/

 

 This is Barney singing Tupac’s “Hit ‘Em Up”

 

 

 

The list of lessons from Randy Pauch’s “Last Lecture” in 2007.

 

 

https://medium.com/human-development-project/life-lessons-from-a-dying-man-2dc0384d9f4d

 

And that’s all I got to say about that.

 

mully kayla copy

 

 

 

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