Life plods along

Its been a long while since I've put anything up on here, so I figured I'd give a bit of an update.
Today is 9 weeks to the day since I had my "big" surgery.

In terms of diagnosis the news has come back better than expected.  The oncology folks are fairly convinced that I have/had Cystic Mesothelioma with mesothelial inclusion cysts deposited around my peritoneum.  This is a super rare diagnosis, has only been reported ~125 times and only 17 times in men...so there ain't exactly a ton of robust science to rely on in the world of cystic mesotheliomas. You may have heard about mesotheliomas from the legal ads on TV as they are typically caused by asbestos exposure.  As far as anyone can tell cystic mesotheliomas don't have that link, although the fact that I lived in an unfinished attic for 2 years in college may provide some confounding information

The Good:
If you get a mesothelioma in your chest, its gonna kill you, probably pretty quickly.
If you get a mesothelioma in your pelvis, its probably not gonna kill you.
They cut a 20cm tumor out and scraped a bunch of other stuff off my guts, so essentially I am disease free.

The Bad:
The tumor has a 50% chance of coming back.
They used to call this "Benign Mesothelioma" then they realized that it can kill you, and that name could be somewhat misleading, I was more reassured by the original nomenclature.

The Unknown:
With things that occur this infrequently, its tough to generate good predictive information.  I am thrilled to have a mildly threatening disease, however as I am only the 18th dude to get this disease, the science that says "this is nothing to worry about" is pretty weak

The plan for now is to wait a few months and then get a follow-up CT scan, followed by periodic scans every so often to make sure nothing is growing back.  It appears that if the mesothelioma fails to kill me, the thyroid cancer I'll get from the radiation from  multiple CT scans should finish things off nicely.

Do you have Cancer?
Strangely this is a tough question to answer.  For years this tumor was put into a category of "things that are a burden but are not dangerous."  As people seemed to do alright with this tumor there was no reason to label it as a malignancy.  Over time they found that about 5% of the people with this actually did pretty poorly, so they took another look at thing are realized that it was probably accurate or at least helpful for treatment purposes to consider this a cancer.
I've come to truly despise the term Cancer.  The terror, anxiety, and needless histrionics associated with that word are truly unbelievable.
If you have a mole cut off your skin at your doctors office on your lunch break, you could have cancer, as could the 18 year kid who has a brain tumor the size of an orange.  The term cancer conveys a host of negative emotions without providing any useful information.
Through this process I've found people that embrace the notion of being a cancer survivor, for every one of those there are two to three who recoil at the sound of the word.  For all the emotion that goes into "cancer" there is a surprising apathy towards the real common players like COPD and congestive heart failure, which I see 15 times a day, and are much more likely to do you in than any ol' cancer.

I had a tumor that was trying to fill my abdomen with muck, I have coin flips odds of having it again, if it comes back I have a small chance of things not going as well as they did this time...call it what you want.



  If I had to characterize the past 9 weeks, I think "strange" would be the ideal world.
 I would strongly advise against letting anyone cut you open if it can be avoided.  People keep asking "Was it painful?"  There was a significant amount of hassle, but thanks in part to the wonders of modern drugs, looking back I can only think of a few moments of real "pain."
Things I wish someone had told me before the surgery:

-Your bladder may not work...for 10 days...you may need to have a catheter placed...four times.  There may be a feeling worse in life than having a full bladder and being unable to go. Let me know if you find what that may be.

-As you remember from medical school, when you have a catheter in place, and your urine gets infected, and you get fevers...that is not ideal.

-When you take narcotics you will get pretty crazy.  You will become neurotic and wipe your face so frequently with a washcloth that your skin starts to peel.  Also there are not really bugs in your hospital bed, so please stop asking everyone to check for you.

-When you stop taking the pain meds, because you've never taken them before, you'll get a good 72 hour period of narcotic withdrawals....this will be much worse than any pain or discomfort associated with the surgery...you will think you are going to die...you won't.

So there were a few bumps in the road, but no major complications and after the first two weeks things have been fairly smooth.
I started back part-time at the 4 week mark, and was at best half speed, which can be interesting in the Emergency Department.
At 8 weeks I started full-time in the ICU which has been pretty tough.  I don't have a ton of pain, as long as I'm not lifting things or trying to get up from a chair, but the fatigue an lack of pep in my step is fairly significant.
I'm not sure if the surgeons tied me up too tight but there is a clear change in my normal gait.  My position of preference is now leaning forward at the waist and leaning to the right with a little limp.  I look like a crazy old man.  I can stand up straight and walk normally but not without feeling some "pull" way back in my abdomen, and it seems like things are tugging and sliding that would be better left alone.  As I said above, nothing too painful...just really strange.  Again don't let anyone muck with your organs if at all possible.

I wrote something the day I returned to work, which I'll put on here later.
Thank you to everyone for you support and unceasing kindness through all of this.  Its nice to know that even a crusty chump like me can have such an amazing network of friends and family.

How to puke in front of your family

Life at home is great, or at least significantly better than it started out.

Prior to discharge the nurse gave me a new foley catheter.  The best part of this experience was on her third attempt when unable to pass the tube she remarked, "There's only one place this tube could go??" There is truly something to be said for having a strong internal monologue.

First day home I almost passed out while trying to fix the drainage bag for my foley catheter.  After lying on the bathroom floor for a few minutes I was able to get up, walk downstairs, and have a repeat performance which culminated with some vomiting.
If you choose to have a similar afternoon here are some tips I picked up:

1. If you are going to almost pass out, do so while in the room with your father, while adjusting your    foley catheter.  It's great to have someone to talk to when you are lying diaphoretic on the floor.
2. Vomiting with ~30 staples in your abdomen really ramps up the excitement level.
3.  If you are going to vomit try to do so in the presence of your wife, mother and father.
Luckily the past few days have been full of slow but steady improvement.  Yesterday I ditched the foley, hopefully for good.  Today untethered by any urine collection devices I was able to go outside for the first time in 9 days.  I made it about four blocks but getting out into the spring sun was truly therapeutic.

The sky was immaculate and the Western Promenade offered first class views of Mount Washington as it shimmered in its spring snowpack.  For those of you who are unfamiliar with the area Mount Washington is the highest peak in Northeast,  features  some of the windiest, coldest weather in the US.  During Spring/Fall/Winter the park at the end of my street offers amazing views of the Mountain which is about 60 miles off as the crow flies. 

      In the summer the humidity and haze off the lakes and ocean obscure the view most days but for the remaining three seasons the horizon is dominated Washington which marks the pinnacle of the Presidential range of the White Mountains.   During Fall and Spring Washington offers a preview and then reminder of the changing weather.  The first snows frost the peak right as the leaves start to change in September, while streaks of white often linger in the gullies and ravines until early June while town is fully in bloom and Casco Bay as transitioned fully into summer.  

  The upside to the notorious winters is that Washington holds snow until early summer and is a mecca for skiers who hike up the flanks to Tuckerman Ravine,  a high alpine bowl which offer skiing for months after the resorts close  

     It was a perfect spring day, and under different circumstances I would be sweating my way up the the flanks of the mountain for some late spring turns.  This year I was truly excited, thankful, and proud to make it two blocks out to end of my street.  Hopefully a year from now my view will be gazing at the speck on the horizon that Portland becomes when you're standing on the summit of Mount Washington.

View of Mount Washington in the fall from the end of my street.

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Looking at Mount Washington(center peak) from across the valley at Wildcat Ski Area

Up on Mount Washington

    

Life at Home

     I escaped from the hospital yesterday.  On Sunday they discontinued my epidural and my IV narcotics and switched me to all oral medications.  In a span of three hours my day spiraled out of control, and I became convinced that there was a small demon lurking directly beneath my incision.
    The surgery residents grew tired of my complaints and loaded me up with a Fentanyl patch which is a 1 inch plastic sticker that contains 3 days worth of narcotics.  You slap the magic stamp on your arm and over the next hours your body starts to get used to a steady stream of medication.  Apparently the surgeons overestimated my metabolism because by the time Monday morning rolled around I had pinpoint pupils, slurred speech, and a very loose grasp on reality.  Luckily my dose was reduced before leaving, otherwise I'd probably be stumbling down Congress street wearing Maine Med Issued grippy socks.
     Sunday was also notable, as yet again my bladder declined to participate in my recovery.  An unforeseen benefit of my bladder failure has been that I've become a real expert in the management of foley catheters, and have even learned how to rig up a foley and collection bag with duct tape so that I can walk freely throughout the house.
   We're still waiting on the pathology report, so we can figure out exactly what is growing in my pelvis.  All signs point to this being a Mesothelioma, which would be a super rare diagnosis.  Since there are only ~150 reported cases of this type of tumor, its hard to find robust information in regards to treatment and outcome.   I've been harassing the Surgeon in hopes of getting an answer but at this point we seem to be at the mercy of the hospital pathologists.

     It feels great to be home.  It's strange to be in such a familiar environment, yet have my activities so severely limited, but even at the worst moments, I find its better to hurt in the privacy of your own home, rather than in a stale wing of the hospital.
   Hopefully one day soon my bladder will awaken and I can be free of all tubes, wires and hoses, but thanks to the miracles of modern analgesia and the loving care of family and friends; life continues to be pretty darn good.

MCD
  

Hospital Daze

     Another day up on the 5th floor.  Last night I convinced the nurses to leave me alone from 8pm until 6am, at night this seemed like a good way to get 10 hours of uninterrupted sleep I failed to appreciate what 10 hours without medication would feel like.
     The morning was a step beyond horrible.   While the nurses seemed to take a decent amount of pleasure from the failure of my medicine free evening, they were kind enough to pour some much needed narcotics down my veins which instantly put me back to sleep.
     Most of my day was spent griping about my foley catheter, slowly walking the halls of the unit, or smearing food around my tray.  I'm still waiting on the final pathology report from my surgery.  The presumed diagnosis is a Mesolthelioma, however the prognosis and next steps depend on the results of the pending pathology.  The divergence of options and outcomes at that point is staggering, and enough to drive you crazy over a weekend. It would clearly kill a pathologist to set foot on hospital property between Friday and Monday morning so I'm expecting tomorrow to be much like today
    There has been some talk about me going home in the next day or so, which is both encouraging and slightly unnerving.  My walking is improving each day, but I still have 3-4 wires and tubes connected to me at all times, so things need to be simplified before I start making firm plans.

Me with a "therapy dog" Apparently he was training to be a seeing eye dog and then went blind.

 With his crazy looking eyes I was afraid that he might attack me.

Before

After

     I did get to see my wound, it was very kind of the surgeons to save my belly button, as a scar through that region would look horrible with my new bathing suit.

Meso what???

The last 24 hours have been a little wild with plenty of ups and downs but overall things could not be going much better given the circumstances.

Erin and I were up and at it well before the sun yesterday.  For the second time in two weeks we found our way to the surgery unit.  After fully disrobing and donning a teasingly small gown I met Dale who had been sent to "shave your chest." Just when I thought we were hitting things off Dale finished the task at hand and excused himself from the room.
Up next was anesthesia, administered by one of my fellow Maine Medical Residents.  Come to find out being friends with your anesthesiologist is a very underrated perk.  My "gas man" told that he would be putting in an epidural, but assured me that I would "feel real good."  After offering a quick goodbye to Erin I was wheeled back and given a hefty IV dose of something that was similar in both name and efficacy to moonshine.  The last thing I remember is remarking that the operating room "looked really fancy" and that "I don't have any pants on."

I woke about 5 hours later with a 12" incision down the middle of my abdomen, a foley catheter, and a crowd of concerned anesthesiologists.
The surgery did not go as planned, which may actually turn out to be a good thing.  What I've learned over the past few weeks is that the world of oncology is painted thick with frustrating shades of gray.  The surgeon was anticipating a cancer starting from my appendix.  Now she thinks I have a mesothelioma  that started in my pelvis.  This is apparently the same type of tumor that old men get from asbestos exposure, only this typically occurs in their lungs.  Instead of giving me the heated "shake and bake" my surgeon decided to "debulk" my tumor and then sewed me back up.  We now await the results of the pathology studies.  Best case scenario would mean no more surgery and no chemo, worst case scenario begins to open Pandora's box of not so pleasant medical treatments.  So my operation shrunk from 6 hours to 2 hours.  I spent most of yesterday afternoon receiving insane amounts of morphine and after 4 attempts I left with an epidural hanging from my back, just like women get when in labor.
Yesterday afternoon involved even higher doses of narcotics interspersed with failed attempts to make coherent calls to family and friends.  Sometime around midnight my foley catheter decided to stop draining, which was far from ideal.
This morning involved a predawn wakeup for bloodwork, more fun with foley catheters, and a diet full of sprite and jello.  Currently I'm in a bit of a holding pattern as I rest up, let my wound heal and await the final pathology report which will determine whether I need chemo or possibly a more aggressive surgery.

Lessons Learned:
1. You do not want a Foley catheter into your bladder.
2. If you ever undergo general anesthesia be sure to document well...see below.

Lets get things started...

When you get cancer, one of the first important steps is to start a blog.

I'm all around a fairly average guy.  I work in an Emergency Department, have a great wife, and am seriously mediocre at most of my recreational pursuits.  Up to this point in my life I've not stumbled into too many situations that seemed worthy of documenting.  This all started to change a little while back.

A few months ago I went to Uganda for work, came home with some strange abdominal pain that I chalked up to consumption of scary African meat, and after a few weeks ended up having one of my Emergency Medicine counterparts check me in to our department for a CT scan.

The scan showed something strange lurking in my pelvis, which triggered a few weeks of appointments, failed attempts at a biopsy and plenty of reassurance that "this is probably nothing bad."

10 days ago I shuffled out the door around five braced against the 14 degree chill
of a Maine spring morning.  Nine hours later I walk 100' from my department to the outpatient surgery unit for  an IV and a steady stream of  paperwork.
 Two hours, a few whiffs of anesthetic, and multiple doses of narcotics later I wake up with cancer.

My first drug tinged  memory is of looking at Erin, who is clutching a glossy
print of my insides. “It’s not good news, but it’s not horrible.”
Sometime in the recent past my appendix developed a
cancer…grew…burst…and then spread all over
my peritoneum.

My presumptive diagnosis is: appendicial neoplasm with pseudomyoxa peritonei.  Essentially I have a primary cancer from somewhere, likely my appendix.  This primary cancer has seeded my peritoneum with cells that produce mucus, which then all accumulates in my pelvis...its not actually as exciting or interesting as it may sound.

My surgeon, who has been remarkable, assures me that in her world of nasty cancers this type is a "nuisance."  While that may be a bit of an understatement it does appear to be treatable and under the best of circumstances curable.

The next step is a big ol' operation.  They put you to sleep, cut out "anything with cancer on it that you don't need." and then fill your abdomen with heated chemotherapy.  Then for the next few hours some unlucky intern has to shake you back and forth on the operating room table in a process they refer to as "shake and bake"

I'm off to the operating room bright and early tomorrow morning.  The surgery should take a few hours, followed by chemo and then a decent stay in the hospital.  The surgeon told me that if I am "tough" then I won't have to stay more than a week, so I'm planning on a solid month.

I'm writing this down for two main reasons.

1.  Its hard to find real nuts and bolts information on what this whole process is actually like.  Despite hours of searching I can't find anyone who can tell me what to actually expect in the hours to weeks after surgery.

2. It has been a surreal process becoming a patient in my own hospital.  I imagine the next few weeks will be fairly educational.

I'm attaching a picture from the "handbook" for my surgery.  I find this flat chested "female" to be strangely inspirational.

More to come from the hospital...