Thirty-Six (36) & A Few Days

(This is best read while listening to the Flaming Lips tune at the link below)

Do you realize that you have

The most beautiful face?

Do you realize

We’re floating in space?

Do you realize,

That happiness…makes you cry?

Last week, July 21, 2018, was my cancerversary.  Thirty-six months ago last week I had a radical orchiectomy in same day surgery at Scripps Green because I did not feel like spending the weekend in the hospital and because my healing powers at home, with the cats, are legendary.  My surgeon removed an orange sized tumor from my pelvis, where it had taken up residence on my right spermatic cord.   If you are not familiar, in a radical orchiectomy, the surgeon begins the incision up near the hip flexor and cuts downward to the top of the penis, then dissects roughly 7 inches to either side, makes a five inch incision in the scrotum and then removes the spermatic cord, the tumor (if you have one….I would assume everyone who chooses this surgery has a tumor….it would be a super odd elective thing to do sans cancer) and the testicle all in one piece.   99.9% of spermatic cord cancers are sarcoma and the key to sarcoma tumor removal is a very, very, very wide excision.

This is what they removed:  that’s the tumor up at the top there, enclosing the spermatic cord.  That was one big ass tumor.   It grew from acorn sized to that big in under 100 days.   Given that the lesions in my lungs are the same flavor, I never expected to see month thirty-six.

While I was quite stoned post surgery in PACU, I knew the news was bad when my surgeon kept looking at his shoes while explaining that he had sent the mass for biopsy and we would have the results in a week or so.    I have lived in surgery for thirty-four years and know that you can generally eyeball a tumor when you pull it out and tell how malignant it is.   After reading the science on DDLPS from 2018 to 2021 and seeing photos of DDLPS tumors, you can absolutely tell a DDLPS tumor from a well differentiated liposarcoma by looking at it.  Homeboy knew what our journey was going to look like that afternoon.

My brother from another mother, Stevie JC, and I left the hospital, went directly to the West End bar in Pacific Beach and had a bourbon drink wake for my missing spermatic cord and testicle.   Then we had some cake and I went to bed after listening to the Flaming Lips song “Waiting for Superman” a dozen times and playing along with it on the 12 string guitar.  Because I was still quite stoned from surgery.  The Flaming Lips are quite excellent when you are stoned and “Waiting for Superman” is quite excellent when you are diagnosed with terminal cancer.

A few weeks later, after bouncing from Scripps pathologists to Indiana University pathologists to a Sloan Kettering pathologist, my final path report came back.  Grade III dedifferentiated liposarcoma with vascular invasion, necrosis, and a mitotic count of 40.  A “high” mitotic count is 10.   I have had some docs I have met along the way doubt that my mitotic count was 40, then I send them my path report and they reply back “damn, boy…that thing must have grown like The Hulk.”   The incidence of liposarcoma in the spermatic cord is .3 per one million people.   Three tenths of one person per million people.   Grade III DDLPS in the spermatic cord occurs at a rate of .1 per million people.   In comparison, the incidence rate of breast cancer is 1 in 8 women.

Cancer is by no means uncommon.  By 2030, the incidence overall will increase to 45% and by 2050 that rate will hit 50%.   Americans born today will have a 40% chance of developing cancer and one in three will be diagnosed by 65.   Those are higher odds than having one spouse for your whole life.  Fortunately, the vast majority of cancer these days is treatable, with an overall survival rate in 2020 of greater than 85%.  Metastatic DDLPS had a 5 year survival rate of 0% in 1970 and has a 5 year survival rate of 0% in 2021.

My first lung lesions appeared ten months after surgery.   The “you’re fucked” aspect of sarcoma is limited to several binary things, which makes it pretty simple to figure out.   One of those “you’re fucked” things is lung lesions appearing in under twelve months. 

Sarcoma, while rare, is relatively easy to figure out when you have all the “you’re fucked” variables ready at hand and if you can interpret Kaplan Meier charts and read clinical studies.  The overall survival of metastatic pelvic dedifferentiated liposarcoma at 18 months is 50%.  It is 23% at 24 months.   In the clinical research it is less than 2% at 36 months.  It is an odd feeling getting geared up to die, basing your gearing up on science, and then not dying.   Same feeling as if you spent a day training to skydive and then you get on the plane and go up to 12,000 feet and the pilot circles and never opens the door and lands. 

I made nine friends on the one social media site I use to look at liposarcoma things and we emailed back and forth.   Seven had DDLPS and two had pleomorphic liposarcoma.   Eight of the nine are dead now.   We met and then they died, pretty much exactly when science said they would die.  Within two years.   They all had wives/husbands and children and there is something fundamentally unfair about outliving them all.  My favorite golden retriever in the galaxy, Gus, got sarcoma nineteen months after I got it and he died three months later.  I think about those I outlived in the past three years, late at night, when my chest pain keeps me up.  

That feeling is even more odd these days….this day, thirty-six months later.  Three years ago my timeline was “I’m going to die some time in the next two to three years, certainly by month thirty-six”.  Now that dumb luck allowed me to hit three years, theoretically, it is “I am going to die some day soon”.   The minute and second hands have sped up a bit lately, but the upside is that it’s sort of like a roller coaster than only goes up.    You might die Tuesday, then you don’t die Tuesday so the roller coaster goes up another ten feet and you crank up White Zombie’s “More Human Than Human” and do the “one more day” jig while making coffee.  On that roller coaster that only goes up every day.

And the down part of the roller coaster?   It’s never been a sense of impending doom or anything like that.  Not for the last two years when science said my body would murder me or day to day now as the chest pain increases.   While I have been a control freak my entire life, there has been a certain sense of peace for the last two years: surrendering to the eventuality of this thing.   There is an unmeasurable spiritual value to surrender.   And surrender is completely different than submission:  surrender is a willful acceptance.  A very chill, peaceful acceptance. 

Like what they teach you in most yoga classes and instead of being all sweaty and loose at the end of the yoga hour, you die.    It’s not like you get a third eye or special wisdom when you get a shelf life, you are simply forced to admit to yourself that Buddha was right.   Everything is quite temporary and all of this may just be an illusion that can go “poof” at any time.  Sometimes without warning. Or, better still, like in some of the Vedic Buddhist texts where Maya is a “magic show, an illusion where things appear to be present but are not what they seem.”  Maybe all of this is an illusion…depends on which bucket of Buddhism you toss your marbles into.  That being said, here are some of the lessons from the last thirty-six months. 

 

Thirty-six lessons… learned during the last thirty-six months:

Time tends to move faster when you are on the clock.   Thirty-six months ago feels like just yesterday.   Time plays tricks on you when you are the clock. Mostly.   But sometimes it passes too slowly, or sometimes too fast or it does not make a difference.    Like the seasons in Florida.

Given that, slow the fuck down.

When you slow down, find reasons to laugh out loud.   Every hour.  Actively look for things that make you laugh like a rabid hyena every hour of the day, then laugh like a rabid hyena for a while.

Most tales that involve large quantities of drugs, a painful break up, or someone dying at the end are shaped by incongruous details.  Pay attention to the incongruous details.

Although completely wrong from a mathematical point of view, the Cantor set part in John Green’s “Fault of Our Stars” holds lessons.   This part where Hazel Grace talks to Augustus.   “There are infinite numbers between 0 and 1.   There’s .1 and .12 and .112 and an infinite collection of others.  Of course, there is a bigger set of numbers between 0 and 2, or between 0 and one million.   Some infinites are bigger than other infinities…I cannot tell you how grateful I am for our little infinity.  You gave me forever within the numbered days, and I’m grateful” Then Hazel and Augustus find a ton of time to make out. Even though they are both hand grenades. You can always find more time to make out. Everyone should make out more. Write that down.

The reason that “Fault in Our Stars’ quote is incorrect is that there are precisely the same infinite number of numbers between 0 and 1, 0 and 2 and 0 and a million.   I spent a weekend proving that to myself…because I slowed down and found time for things I love.   Like math proofs.   I never had time for math proofs before this.  The problem is that there are far more real numbers than there are natural numbers and there is no simple way to line up the reals and the naturals in a proof.   To prove it, you have to start with Cantor and then do proof by contradiction and that will take you a whole damn weekend to do.  Then the sets will be different sizes, which then leads you to the fact there are multiple levels of infinity with the reals having a larger set.  Nonetheless, the infinities between 0 and 1 and 0 and 2 are not different sizes.    That is a math lesson I learned.

You don’t need 90% of the stuff you have.   I got rid of 90% of the stuff in my La Jolla home when I moved into the Winnebago and do not miss any of the stuff.  

You always run out of money faster than expected, especially when you outlive your Kaplan Meier and science.

If your parents raised you correctly in The Land of Cleve, you can figure out how to get by on broke levels of cash.   I was down to $14 last month and $17 a week ago and none of the cats starved.   

I should have moved into a Winnebago years earlier.    There is plenty of room in a Winnebago for a single man and three adult cats and a Winnebago can go anywhere.  People still want to make out with you, even people you do not know, if you live in a Winnebago.   That was a big concern I had in Q1, 2019 because I do love making out.

Pain is relative.    You can always take more pain, even when you think you are at your limit.  Pinky swear.

The times when the pain is a 9.8 (because you always save your 9.9 and your 10 for a rainy day) and you lay in bed wishing science had applied to you because if you’re dead it does not feel like this….will always be followed by the morning where you wake up and are glad you beat science.   Because regardless of the pain level, alive and playing “Ripple” on a 12 string for the cat is better than dead.   And you can always take more pain. Eight weeks ago the on and off stabbing pain in my chest from the largest tumor became a 24/7 thing and at first I thought I would go nuts with it and said to the cats “I don’t know if I can take this pain” and now?  I am used to it.  Pain is relative.  You can always take a little more pain.

That being said, while pain is inevitable, suffering is only optional.

Take some time to sit and think every day.  Just sit.   And think.   Like that dude in “Sound of Metal” with his donut and coffee, in that room all alone at 5 a.m.

Some of those times when you are just thinking, go back through all your relationships from 7^th grade on and just remember the fun parts.   We tend to focus on the endings in relationships and all relationships end badly with super messed up nuttiness.   Odds are 93% or so of your time in each relationship was chock full of fun.  Spend some intentional time thinking back on all those beginning of relationship times.   Those were some damn good times.

The high desert can be just as beautiful as the ocean, especially on a clear night with a full moon and stars, well away from city lights.

Life is game that can only be played, never truly won. 

Go see as much live music as you want to see.   See some live music every week.   I skipped at least half the concerts I could have attended from 21 to 53 because of work.   I regret missing 100% of those shows now.   I missed seeing The Who because of work.   And Leonard Cohen.   And I skipped John Prine three times because of work, then he shuffled off the mortal coil.   Go see more live music.    Never skip a show for work.

You can always toss around a few more “I love you”’s every day.

A lot of people are freaked out about death, which is a shame. They are uncomfortable talking about it.  Unlike marriage or having your first baby or things like that, we never talk to dying people about what it is like to be dying.   Not everyone is going to get married or have a first baby, but rest assured….everyone is going to die.   If you treat it as a beautiful, very natural part of the whole journey, it will not freak you out.  

There is no “always”:  there is only right now.

Maximize right now.   

It’s amazing the things you appreciate when time has the slightest bit of importance.   

When you do not have the option of doing it tomorrow.

And the phrase “some day” loses the vast majority of its meaning.

All these things (the appreciation, the loss of options and “some day” becoming meaningless), combined, unburdens you and allows you to do what you want, whenever you want to do it.    Which would be a kick ass way to live life every day, with our without cancer. 

Pain heals, chicks dig scars, glory lasts forever.   That is Shane Falco’s lesson.  Sorry about that.   Not mine.   Solid lesson, though.  

All things fall apart.   Everything breaks.   Don’t sweat the broken things.   

You can cut out 100% of the people in your orbit that do not add to your day and not miss them at all.   You won’t miss them even a little bit.   If you feel anxious or tired after speaking with certain peeps in your orbit?  Quit taking their calls forever.

If you cut out the things you do not like doing, you will be way happier.  I cut out 100% of the things I didn’t like doing.   I hate talking on the phone and I gave it up.   I don’t miss talking on the phone.   I hated first dates, so I quit dating.   And I sort of wish I had given up all the things I gave up ten years ago.

Everyone should read more poetry.    All poetry.

There is a large amount of dumb luck involved in longevity, once diagnosed with sarcoma.    I have done exactly nothing to extend my life, from a “treatment” point of view and here I am. Dumb luck.  Plus, I have always been oddly successful in good bar fights, despite the three broken noses.  In bar fights and with metastatic sarcoma, I give as good as I get.   That moron who wrote “Chris Cures Cancer”?   That is dumb luck, too.   Surgeons create our longevity.   Plus, that moron Chris had stage II colon cancer and like 90% of people with stage II colon cancer live.   He did not “cure” anything.  How the heck is that dude’s book a best seller.   Damn snake oil salesman.

Everyone is the star of their own romantic comedy.   That’s from Hank Moody and true to the core.

But mostly, just slow the fuck down.   One day you, too, will be on the clock and when that happens you’ll kick yourself and say “Mulligan told me to slow the fuck down and I ignored him.   Shit.”

Slow the fuck down.   

Do you realize

That everyone

You know

Some day

Will die

Instead of saying all of your goodbyes…

Let them know you realize

That life goes fast

It’s hard to make the good things last…

Postscript For Sarcoma Newbies, Especially the Liposarcoma Newbies:   Lessons From the First 36 Months

After I kick the bucket, my book “You Walk Him and Pitch to the Rhino:  A Misanthrope’s Guide to Sarcoma” will come out.   In this book you will find evidence based deep dives on everything you need to know about sarcoma.   Most web sites have all the same blurbs about sarcoma.   “Misanthrope’s Guide” goes deep on every topic, including crapping your pants and the history of sarcoma going way back to William Cooley in 1891 and using murine and zebrafish models for research and how to read peer reviewed studies and dozens of more topics.  Moreover, it is one of the few books that says it is A-OK to embrace death as an eventuality because everyone dies but not everyone knows what is going to murder them, like you do.   Maybe.  If you have metastatic sarcoma, which is your connective tissue trying to murder you.   It’s like “Clue”, but instead of Mr. Mustard in the library with the candlestick, it is Mr. Dedifferentiated Liposarcoma in the lungs with the mets.  In the meantime, here are some helpful hints and things on which to do your own deep dive.  For symmetry, there are thirty-six.  The book has many, many more.

1.  It is all about your histology, your grade and the location.  You can pretty much predict your future based on the histology, grade and location of your tumor.  And the size, depending on the location.
2. Given that previous sentence, take the time to do deep dives on your histology, grade and location every week.   Vint Cerf and Al Gore created The InterWebs for things like this.   It is super easy to do deep dives on your exact histology and grade and location by searching with quotation marks like this:  “histology, location, grade”.    For example, “dedifferentiated liposarcoma, pelvis, grade 3”
3. All histologies behave differently:    well differentiated liposarcoma behaves differently than pleomorphic which behaves differently than mixoid which behaves than dedifferentiated.  Mixoid round cell behaves differently and responds to different things than WDLPS, DDLPS and pleomorphic.  Etc, etc, etc.  
4. Stay the hell away from message boards and social media sites:  for the most part, they are populated by morons, liars and the criminally insane.   Medical social media, on average, is 67% liars, morons, and the criminally insane.
5. Teach yourself to read peer reviewed research immediately.   The only thing that matters is peer reviewed research.   Some random on-line person in Toledo and their experience with sarcoma means nothing in regards to you.   Only peer reviewed research means anything to you.   Evidence based medicine is evidence based.   That dude in Toledo is probably full of shit any way.   They don’t have sarcoma.   They are just lonely and joined a sarcoma group.
6. Even if that dude in Toledo actually has sarcoma, they are a data point of one.   Virtually nothing that happened to them applies to you.   The only thing that MAY apply to you is peer reviewed research where the “n” is high enough.
7. Incurable means not curable and some things are incurable.   No one is hiding anything from you.  Strangers on The InterWebs are not going to have some magical mystery cure.  Were there a cure, we would all know about it.   Some things are incurable and absolute.   Like starting a land war in Southeast Asia.   Never, ever start a land war in Southeast Asia.  Even if some stranger on The InterWebs writes “oh, yeah…I started a land war in Southeast Asia and won.”   They are lying.
8. If you have a high grade tumor or metastatic sarcoma or local recurrences and if your insurance will cover it, get to a sarcoma center.    The peer reviewed research says your outcome will be better at a sarcoma center under those conditions.
9. Half of us sarcoma patients will be A-OK forever and ever and ever and ever.   Those are pretty good odds.   Better than the odds of like, a plane crash.
10. Half of us, the ones who get mets to the lungs, will die.   Technically, everyone in the world is going to die, you just know in advance what is going to murder you.    If you want to prepare for that, the best reference book in the galaxy is BJ Miller’s “Beginner’s Guide to the End”.  Dr. Miller is at UCSF and he is a genius with a heart of gold.
11. There is nothing wrong with embracing the eventuality of death, being at ease with that eventuality and then having some damn fun with it.    Record some messages for a year after you are dead and pay your cell phone forward 2 years before you die.   Have your BFF send those messages to people in the middle of the night after you die, from your phone, as text attachments.   “Hey, Bob, this is Mulligan.   Saint Peter and I want to know why you touch yourself so much and I am truly shocked at how little you floss.   Those teeth are forever…….floss!   Oh, and Saint Peter said your porn choices are very, very odd porn choices.”
12. Sarcoma hurts.   Sometimes it hurts a lot.   Stay ahead of your pain.   If you want a good book on using things like weed and mushrooms and such to control your pain and anxiety, buy Michael Pollan’s book “How to Change Your Mind”.  Michael Pollan is also a genius and one hundred percent of the info in his book is backed up by peer reviewed, evidence based medicine and studies.
13. The placebo effect in pain control is upwards of 50% in some studies, meaning that if I told you Hostess Ho Hos will control your pain, 50% of people will get pain relief from Hostess Ho Hos.   For a bit.    CBD “working” is all the placebo effect.
14. Always, always, always get surgery with a great surgeon who has done surgery on sarcoma patients.   It is a different kind of surgery.  Remember when Michael Jordan played semi-pro baseball?   He was a great athlete at hoop and not so much at baseball.   Get yourself a surgeon who is MJ playing hoop.
15. 100% of the peer reviewed research will show you that best shot you have a curative ending is surgery.    Surgery with the right surgeon.
16. Never, never, never believe the morons and liars on social media who claim that herbs or essential oils or coffee enemas or special sugarless diets will “cure” your sarcoma.   They are lying and if you listen to them you will probably die faster.   The fastest way to die is to not have surgery.   When you chose not to have surgery or not to listen to actual medical professionals, you are choosing to die faster.   Which is all well and good…who am I to tell you how fast to die.   You die when YOU want to die.   I just hate snake oil salespeople.   Google “Shut the Fuck Up About Your Bullshit Cancer Cure” by James Fell, if you would like a good read some time.
17. Those with metastatic sarcoma, you are most likely going to die.  And by “most likely”, I mean you are definitely going to die.  It might be in 6 months or it might be in 40 months, but you are going to die.  Metastatic sarcoma patients, these days, always die.  Maybe in 5 or 10 years that will change, but today all the metastatic sarcoma patients die.   Wrap your arms and head around that as soon as you can so that you can go have some damn fun.  There is a shit ton of fun to be had out there!
18. You are not “giving up” if you embrace the reality that you are going to die.  If you have people in your orbit who do not realize the ignorance involved in telling a terminal cancer patient not to “give up”, cull them from the herd.   Do some pruning.   They will spoil your fun once you embrace the eventuality of death and start having some fun.  They will probably not even rob a bank or a 7-11 with you.  That is still on my bucket list.  I am saving it for the last week.
19. There are states with death with dignity laws.   I have a death with dignity doctor and I hired him early on.   If you have metastatic sarcoma, there is no rule against interviewing palliative care teams while you still feel awesome.  There is also no rule that says you cannot hire a death with dignity doc while you still feel great.   No one puts baby in a corner…..
20. Regarding chemo or immunotherapy, do the following when considering one:
    1. Find the overall response rate.  It is an actual number.   Like 11%.  That is the percentage of people on which the chemo/etc worked.   If a study says the overall response rate is 11% it means that if 100 people were on that drug, it worked on 11 of them.   It means that if YOU go on that drug, there is an 89% chance there will be no impact on your sarcoma.
    1. If you have visited a casino and played blackjack….which is the one game where the house only has a 1% edge, probability of an overall win in blackjack is 42.22%, a tie is 8.48%, and a loss is 49.10%
    1. Within that overall response rate, find the most important impacts an agent can have:  performance free survival and overall survival improvements
    1. An improvement in PFS of 42 days means that instead of growing additional tumors in say, 3 months, the peeps in the study grew new tumors in 4 months and 2 days
    1. And overall survival is the holy grail.    That means people live longer on that agent.
    1. There are precisely zero (0) agents for liposarcoma that provide even an extra day of additional overall survival.     The average overall response rate for all liposarcoma flavors is around 15% and of those 15 people out of 100 that get a response, none of the 15 got a single extra day of life.
    1. Mixoid LPS tends to have a higher response rate.   As mentioned above, learn to read the peer reviewed studies so that you can make an educated decision.
    1. Ask how much the agents cost.   They can run $10K to $20K a month and you do not get a refund when they do not work.   
    1. Ask what the primary side effect profiles are, how they will impact your quality of life.   Ask what the secondary side effect profiles are and how they will impact your quality of life.
21. Regarding chemo, immunotherapy, etc.   Whether to pursue them (based on the science) and how long you stay engaged based upon your side effect profile is an intensely personal decision.   Make that decision yourself with your friends and family around you, taking into consideration the items directly above this.   To some, a 15% overall response rate is an excellent number. 
22. If you want to get a general idea of how long peeps with what you have live, learn how to read Kaplan Meier curves.   Kaplan Meier curves are real.   They use the law of large numbers and the law of large numbers is infallible.   If the Kaplan Meier says that 75% of peeps with what you have die by month 25, then 75% of the peeps who have what you have die by month 25.  And then 25% of people live past month 25.   There is no magical mumbo jumbo there, it simply is.    So, go have some damn fun.
23. CBD does not cure cancer.   CBD is a bunch of crap:  there is no peer reviewed research behind CBD.   There is peer reviewed research behind weed and THC and they work great on anxiety, pain, and appetite.   Go.   Full.    Weed.    
24. Everyone with sarcoma loses something pretty significant.   I lost my pelvis.  If you must go on message boards and social media sites, don’t be the slappy on the social media sites who complains about losing their eye or losing a kidney.  Some people lose legs and arms.   Our one unifying thing in sarcoma is we lose a lot of ourselves. 
25. Don’t waste a minute worrying about the things you lose.   They are gone.   Focus on what you have left.  Some days I find it hard to walk because the radiation did a number on my spine and hips.   On those days/weeks..I read.    
26. Radiation does not work on well differentiated and dedifferentiated liposarcoma.   It sort of works on some flavors of pleomorphic and mixoid.    Make sure you discuss this with your sarcoma team, especially if they are discussing post-op radiation.   Radiation for sarcoma, post op, tends to mess up your body.   A lot.
27. This is what my pelvis looks like now.   I also cannot walk well because the 8 weeks of radiation did a number on my lumbar spine and hips.   My radiation oncologist did not tell me that radiation does not add a single day to my life and would significantly impact my quality of life.  Do not repeat my mistake if you have dedifferentiated liposarcoma.   Post op radiation for DDLPS does virtually nothing in terms of adding to overall survival.  Ask your radiation oncologist to carefully walk you through the peer reviewed research on outcomes and long term side effects if she/he suggests post operative radiation for DDLPS.  Show them these pictures and say “Mulligan’s pelvis started degrading 20 months AFTER he finished post op radiation.   Will MY pelvis look like this?   He said it hurts like crazy and bleeds and makes him feel like one of those lepers from the Steve McQueen movie ‘Papillion’.”  Then have them walk you through the peer reviewed research on your type of liposarcoma.  According to science, post operative radiation does NOT work on DDLPS or WDLPS.

1. If you do not want to live where your sarcoma team is, don’t.   I have chosen to live in Kanab, Utah where it is chill and remarkably beautiful and 9 hours from my San Diego team and 5 hours from my Phoenix team.    If you get yourself a great local doctor and care team, you can live wherever you want for your final year(s).
2. You can look far and wide and not find anything on The InterWebs that tells you how your chest will feel when your lesions grow. Allow me to help. The lungs, like the brain, have very few pain nerves…however, the rib cage and the area around there is super duper enervated.   Wherever you have the largest lesions, it will feel like a little man is in there, stabbing a stabby thing outwards from your lung lobe.  You will get used to that pain.   Seriously.   It will become a dull ache in the background, eventually, but it will be scary the first month or so.  The breathlessness comes and goes and also trips you out pretty good,.   When your O2 drops to less than 84 at night, as it will do, your brain will wake you up.   Find some things to do at 3 a.m., like Netflix.   Or making out with a significant or insignificant other.   Some days the breathlessness will be super bad and some days you will not feel it at all.   Which is pretty trippy.   Know this:  even on your worst stabby pain day and loss of breath day, there will be better days coming up.   You’ll get some good days again.   Pinky swear.   
3. There are plenty of good books on the end parts.   Try Randy Pausch’s “Last Lecture” or Paul Kalanithi’s “When Breath Becomes Air” or Atul Gawande’s “Being Mortal”
4. Speaking of writers, “Prozac Nation” author Elizabeth Wurtzel died in January 2020 from metastatic breast cancer.  Or, rather, from complications related to metastatic breast cancer.    She did a good job writing about death, too.   Her final printed words were brilliant, especially given the lexicon of books she left behind.  She wrote this:
5. “Do you know what I am scared of?  Nothing.  Cancer just suits me.   I am good in a fight.   This one goes on for the rest of my life.  But I have been fighting within myself in one way or another all along.   I am used to it.   I cannot think of a time when my mind or my body was not out to get me.   I am at ease with discomfort.  I am a ballerina doing a pirouette with perfect turnout in toe shoes, and it does not even hurt any more.  I am elated.  I love spinning this way.  I would not have it otherwise.   I am a con artist and cancer is my final con.”  (Elizabeth Wurtzel:  1965 to 2020)
6. Prep your friends and family to deal with both the ending (if you are going to end) and the grief before you shuffle off the mortal coil.   Take that on, as much as you can, so they can enjoy the ending, too.    Imagine “Avengers End Game” without that magnificent ending.   Endings can be a great deal of fun if you make them fun.
7. Go have some damn fun. 

I have no idea why WordPress started again at 1 there above. Rest assured there are 36 of these suggestions. Best of luck to you in your sarcoma journey and look for this book after I shuffle off the mortal coil in January 2022.