Lost and found?

I always felt somewhat bulletproof.  I rode my motorcycle with no helmet, never wore seat belts till they started ticketing, I bucked every single safety thing because I thought that it wouldn't happen to me.  And it didn't.  Nothing.  Coming home from a party on my motorcycle.  No helmet.  70 mph around this sweeping left turn.  Had a nice beer buzz on, sun out, warm, in a T-shirt and shorts, loving life.  Swung into the turn and over corrected, went off the road into the gravel then bounced into the weeds, jammed the handlebars over and popped back onto the road.  To this day, I have no idea why or how I didn't crash.  I sure should have. 

I have, like most of you, hugged that poor SOB with a new diagnosis of whatever and telling them how sorry I was, thinking I was immune from that.  Bad things happened to others, not to me.  And I have seen some bad stuff happen to people.  

But now I am getting a sense of how short life can be.  Waiting for those CT results to see if the cancer had spread to my liver really messed with my head.  I know how it CAN end for me.  The mystery is gone in a way.   Like I found an expiration date on myself.  The date is hazy and I can't quite make it out but it is there and I feel like I've lost something...innocence maybe.  I don't know much about life but I do know I'll never feel like I used to.  

I went to the appointment with Seattle Cancer Care Alliance this Wednesday.  Lots of sick people there.  It's not too depressing though.  The staff was very upbeat.  It seems so screwy to think that I would be spending the rest of my life in and out of this place for rechecks.  In a year I wonder what I will think of all this?  Long road ahead that is for sure.  I won't have to worry about qualifying for life insurance... 

Linear accelerator!  Part of my radiation treatment program. 

This doesn't look expensive at all...

The place to be I guess.  The SCCA.

The view out my window.

I met with my cancer team today.  Mind you this was my second opinion visit (never mind that I didn't have my first visit with the Swedish docs yet), my "I wonder if I want to go to SCCA and get treated here" visit.  First up was meeting my new oncologist Dr Stacey Shiovitz.  She said right off the bat that I have a MRI ordered for Friday.  Wow.  They move it right along here.  Dr. Shiovitz is really nice and knowledgeable.  We had a great visit and went over what to expect.  Then I had my blood drawn for genetic testing.  I might have Lynch Syndrome which means I am at risk for skin, brain, colon, gallbladder, etc. cancer.  My offspring is also at risk for cancer.  Sam has to get checked at 36 years old.  I wonder if I'll live long enough to see that.  My brother already has his GI consult in the works.  I believe my cousin Eric is also getting checked.  Good on them.  Get checked.  I'm here to tell you.  Get.  Checked.

Then I went upstairs for my flexible sigmoidoscopy  and to meet Dr Krane who will be the surgeon that will open me up.  She is from the East Coast but did all her training in Chicago and recently moved her.  Her and I ripped on Seattle drivers and generally really hit it off.  I really like her.  Business but fun.  I also met the RN that will be following me for the next five years, Deb.  She is fun and cool also.  Had the sig scope thing done and Dr Krane was very optimistic about me being able to have my ileostomy reversed...in 7 months...unreal.  By then I suppose, it will be old hat.  Of all the things that bug me about this cancer, it is that damn ileostomy.  I just hate the thought of it.  Hate it.

After talking with the surgeon for about an hour, we had an appointment with my radiation oncologist Dr Koh.  This guy was great also.  We ate up an hour of his time and when we were done he told me "We are going to beat this thing.".  I sure hope to hell that we do.

Friday I go to back to SCCA for a MRI of my abdomen.  Of course I'll have to have more blood drawn and IVs.  Monday is University of Washington for genetic counselling and then back over to SCCA for the MRI results meeting with my team of doctors.  The MRI is better at detecting cancer spread so it will tell us if I am truly screwed or not.  Great.  I get to wait all weekend for that result.  

This is poisonous.  You have to be trained to administer it so you don't get sick.  I will get injected with about a gallon of it over the course of my treatment.

So it will shake out like this-

6 weeks of pill form chemo with radiation.  Pill is twice a day and radiation is every day for one hour.

I get 6-10 weeks off from that and then surgery.  6 days in the hospital and I might get to go home and then 2 weeks recovery at home hopefully.  This is assuming I have regular surgery.  Dr Krane says she will first try to do a laparoscopic surgery and if that doesn't work they will gut me like a fish.  With a laparoscopic surgery, the incisions are smaller and the healing time is quicker.  They are taking out a big chunk of my colon.  That gets messy so I'll get infected probably.  I was told to figure another possible hospital admit for that.   They'll try to minimize it but it is a messy surgery.

Let's say 4-6 weeks after surgery, I start the heavy duty chemo.  That is for 5 months.  I go in once every two weeks for an infusion of one drug and I get to take a pump home and infuse another drug over 2 days.  

After 5 months of that, if all goes well, I rest for a month or so and then they might be able to reverse the bag hanging off my side.

Maybe by my birthday (end of October) I will be done with chemotherapy. <Sigh> 

I have to say the support I am getting have been remarkable.  The folks I work with are just awesome.  Such support and love.  They are the best.  Of course I would be remiss to not mention my family and friends.  Love you guys!

Here is that Mercedes commercial I mention?  I think it is really well done.  Brings a tear to my eye.

Waiting is the hardest part

The 18th I have my next appointment.  This is with the oncologist Dr Gold.  I hope he has the...Midas touch.  Seems like a long time away.  But when compared to how long I'll have an ileostomy, one week ain't so bad.
My big question is do I wait for SCCA?  That appointment is on the 29th of December.  If I wait for them, everything waits.  A couple weeks might not make a big difference but to me it feels dangerous. <edit>  Just got off the phone with them and they are trying to get me in sooner.  Maybe next week.  Evidently they are super busy. <edit, edit>  The 17th of December I have my appointment at SCCA.  That is a good thing.
While working on the boat yesterday I was handling epoxy and thought to myself, I better get more gloves, I don't want to get cancer.  It is moments like that when this feels almost dream like (well nightmare).  The anger has more or less passed and now I am left with this feeling of uncertainty.  School is helping to keep my mind off the fear though.  Finals next week and I'll be so glad when this class is over.  Nursing Research and Statistics.  Ugh.  What a semester.
I am starting to rally and feel like this isn't the end of the world.  The outpouring out love and support has been nothing short of amazing.  While I never say it was worth getting this disease to experience that love, I stand in wonder of it.
Pete J., who knows a thing or two about abdominal surgery and almost nothing about sailing, told me yesterday that this will be a marathon.  Conserve energy and be ready for anything.  There will be setbacks aplenty I am sure but also times of inspiration and joy.
If I make it 5 years, my survival rate goes up pretty good.  5 years of waiting.  Life will be moving ahead as usual.  Sam will be in 4th grade, Ben in 9th grade and Max will done with school and maybe college. Jen will be be as lovely as ever.  I'll be out of school also come to think of it.  That is one more reason to beat this thing.  No sense in dying AFTER I complete school.

Stage III.  Barely.  My TNM score, that's Primary (T)umor, Regional Lymph (N)odes and Distant (M)etasis, is T3, N0, M0.  I'm not at Stage II because the tumor breached the wall of the colon.  Missed it by millimeters.  If I was Stage II, no radiation.  So what does it all mean?  On the 18th I meet with my oncologist Dr Gold.  I then get to have another doctor.  A Radiation Oncologist.  They will tattoo me with marks so they can shoot radiation into me and hit the tumor.  The tattoos are like a cross-hair on a rifle so they limit the damage to the surrounding tissue.  I also start taking a chemotherapy pill.  I get this for 8 weeks.  Radiation five times a week.  One hour at a time.  Side effects of the radiation will be burns to my skin and irritation to bladder and colon, green skin, and a possible super-power.  I am hoping for invisibility.
After eight weeks of that, I go to surgery.  They will open me up and take out most of my colon.  The radiation will have damaged the area so much that I will have to have an ileostomy.  I also get a port-a-cath placed.  Recovery from surgery is 5-6 days in the hospital.  I will start chemotherapy then and have 6 months of that.  After 6 months or so, I will go back into surgery and they will reverse the ileostomy (hopefully, sometimes this is permanent).  The surgeon says next year this time I should be almost feeling normal.  Maybe.
I looked at myself in the mirror this morning at my bare abdomen and tried to imagine a huge surgical scar there and a bag hanging of my lower belly.  First I got scared and then I got mad.
I have to say that I have never been angrier in my life.  I just wanted to scream.  Bellow.  Burn the sky.  Destroy everything beautiful.  I was mad at everything.  Mad doesn't do it justice.  Hate.  Boiling rage.  Seething fury.  I was careful not to lash out (mostly, sorry George) and kept it in but I was pissed.
We had Christmas brunch at my mother-in-laws club and I left early.  Told my wife I was going outside and I walked around and around the block.  My good friend Pete told me couple days ago that anger is useful but only when you are out of options.  Use it when you get sick on chemo and frustrated with life and feel you can't go on.  Fight that feeling with anger.  Anger now, while healthy, is wasted. Well screw that.  I am angry now dammit.  I texted with my cousin Eric and vented.  I vented to my mom.  I raged to the sky (Seattle is full of crazies, it is the mild weather.  I wasn't noticed).  I emailed Ken, I talked with Janine, I emailed my uncle.  All of this helped but still...
Eventually I got back home with the family.  Anger still there.  Like a cancer...  My wife left with the mother-in-law and I was home with the kids.  I sat in the living room and stewed.  I started a blog post but it was so full of hate that I deleted it.  Then, when I thought I was going to scream, Sam came up to me and gave me a hug.  Just after that, my wife called and said Hi.  Gone.  Hate, anger, all of it.  Gone.   I should add while hugging me Sam was asking if she could have screen time but I'll take any sort of hug at this point.
“We must embrace pain and burn it as fuel for our journey.” – Kenji Miyazawa

Meanwhile...

I have to make a disclaimer here.  I figure the next year of blogging here is going to be me whining and carrying on.  Not everyone cares and I respect that.  I expect that.   I'm not the only one with cancer.  I get that also.  There really is nothing special about me.  I am one of billions.  Well, I make good bread and can drive a sailboat OK.  Trim a sail?  Not so much but that is why God made crew.

I used to ask myself that in five years am I going to care about what happened today?  I say that to myself when dealing with any situation that was unpleasant which basically meant I muttered that all day long while at work.  But I think in five years I very well might care about what happened today.  At 1010 am I will sit down with my wife and talk with the colorectal surgeon and find out what we are going to do next.  Then I have a choice to make.  Do I stay with the Swedish Medical system (where I work) or do I go to University of Washington/Fred Hutchinson and the Seattle Cancer Care Alliance (SCCA)?  Seattle Cancer Care Alliance.  Sounds like a team of superheros.

Not actually the Fred Hutch/SSCA building

  "Meanwhile in the conference room on the 8th floor of the Fred Hutch building, the Seattle Cancer Team Alliance is assembling the greatest forces of good that world has ever seen!!"

They might be superheros actually.  The SCCA has a new webpage and the first thing you see is their video about their superior survival rates.  Complete with graphs!!  I was doing pretty good till I watched that video (it is one of the scrolling panels that rotate through).  While not sensationalistic, it does have a bit of a scare tactic feel to it.  "If you don't get ALL your care here, your survival rate will be lower.  Here is a graph with colored lines to prove it."  I mean if I make the wrong choice now, will I live?
So I will call the SSCA on the way to Swedish and get a second opinion.  They promise an appointment within one week.  I burned up a month screwing around worrying about getting cancer. In that context, what's a week.
I get reminded that this sickness, this damn cancer is not only about me.  It will affect others by how I respond to it. It would be so easy to focus just on me right now.  After all, I'm the one that has it. It might kill me and although I might bore you to death, my cancer isn't going to kill you.  But I am not going focus just on me.  I have nothing to do anyway.  Not really.  Make the choice about what treatment and doctor I am going to follow and...follow.  I am not trail-breaking here.  Someone else gets to put my IV in, they wheel me to surgery, they do everything, well I guess I'll have to change my colostomy bag but you get the picture.  A lot of the treatment that I am going to endure is me sitting there and taking it.  With grace and strength.  I hope...
Today I find out what stage cancer I have (I-IV with IV being the worst).  I am thinking I am Stage III merely because the CT scan showed enlarged lymph nodes.  That might actually make me a Stage IV but I am not sure on that.  Hence seeing the doctor and getting another colonoscopy but this time with ultrasound.  I have a feeling that I will be getting chemo and radiation prior to surgery and then chemo for 6 more months.  The chemo and radiation prior to surgery will shrink that tumor and make it easier to remove.

Here is a picture of the technician and the shrink ray.  Photo courtesy of SCCA.

So I did much better with my bowel prep this time around.  Practice makes perfect.  I used soft toilet paper and I was gentle.  I also learned that if you are taking the prep and feel like you are going to pass gas.  IT IS NOT GAS!
I'll update the blog later with what we find out today.  I'll leave you with some Homer Simpson and a quote from one of my favorite books.
“I don't want to die without any scars.” 
― Chuck Palahniuk, Fight Club

This is the FIRST thing I thought of when I got my diagnosis.  Honest.

And you thought this was only a sailing blog...

I was asked fairly regularly before our trip why we were going to do Mexico.  I always said, "My dad and uncle died relatively young from cancer.  I might get it, so we are going now."  Prophetic. 

So back from Mexico, starting to get our lives all back on track and I had a problem.  Since May I was experiencing some bleeding from, well, my butt.  No leaking but when I felt I had to pass gas, I'd sometimes pass blood.  I have a history of hemorrhoids and didn't think much of it.  Till it never went away.  We didn't have insurance so I knew I'd have to wait until I started work.  Started work, started school and waited until insurance kicked in.  October starts and we heard nothing from the insurance company.  Couple calls later and we are all set.  Except I'm scared.  Google rectal bleeding.  Google rectal bleeding no pain.  Cancer comes up.  I have a family history of "stomach cancer" (grandfather) and both my dad and uncle died of lung cancer (smokers).  Mom had cancer of the uterus.  Cancer don't run in our family, it gallops!  Still, the stomach is a long way from the large intestine.  Unless back in grand-dad's day, "stomach cancer" is actually colon cancer.  End of October...still no visit to the doctor.  The day of my birthday I promise myself to see the doctor.

Appointment made and followed through.  Blood work and stool sample.  Maybe I got a bug in Mexico.  Maybe I have irritable bowel syndrome.  Maybe...

All labs are normal.  I'm still bleeding.  Colonoscopy scheduled for December 2nd. Did the bowel prep which wasn't as bad as you heard.  Till I wiped a bit too much and then it was awful.  Use very soft toilet paper and be gentle to yourself.

I get picked up at my house by my step-father Z. If you ever have to go through something like this, it helps to have such a great man by your side.  Thanks Dad.  Love you.  Head downtown Seattle for the scope.  IV placed, Fentanyl and Versed given and I'm out.  Till I'm not.  Doctor wakes me and I can see inside me.  Why?  Doctor says, "You have to see something."  Pretty large bleeding mass right where the rectal area ends and the colon proper begins.  Biopsy taken and also they found 2 8mm polyps.  Those are removed and biopsied also.  Oh and one hemorrhoid.  Non-bleeding.

Immediate CT scan order of chest, abdomen and pelvis.  Colorectal cancer spreads.  Mainly to the liver.  If that happens it gets ugly. I have more blood drawn.  This time they add a bleeding profile.  I know that is for surgery.  I get scared.   I also have a fear of needles.  By the end of the day, I could care less about them.  Of course I was still drugged and sleepy from the meds given during my colonoscopy.

Wheeled into CT and they start another IV.  Why they couldn't use the one that was placed for the scope is never really explained all that well.  She digs around and finally gets it.  I have sent many a patient to the CT.  Never had one.  They inject dye into your body so the CT can see everything.  This dye gets removed by the kidneys.  The RN gets more blood and runs a creatinine clearance which shows if my kidneys can handle the dye.  They can.  Hands above head.  I slid into the doughnut and the dye gets injected into me.  If the cancer don't kill you, I think the cure will.  Warm flush feeling everywhere.  And I'm done.  Go home and wait for results. My mom is told the news and in typical German fashion, wipes away a tear and starts getting information on who can help us the best.  I start thinking maybe I should pray.  

That night was rough.  I'm very scared.  I learned to never, ever Google colorectal cancer survival rates.  Ever.  Especially with the "mets to liver" added.  Can't sleep, eyes burning from crying so much.  My wife and I talked about it while we should have been sleeping.  I am almost inconsolable.  I worry about my family and how they will take it,  having a colostomy bag, and dying.  In that order.  Jen told me that Ben came to her in tears and was worried about me.  That started another round of crying.  Getting dehydrated from crying.
I have a 4 year old little girl, a 9 year old son, a 17 year old step-son, a beautiful wife, and I get cancer.  I take care of people all day, every day in the ER that have much less and they willingly try to kill themselves with booze and drugs.  They don't get the killer, I do.

Woke up in the morning and I hear our 4 year old calling out from her room, "Is anybody out there that can give me a hug?"  Or something like that.  I'm not sure because I broke down and sobbed for 15 minutes.

December 3rd was spent with me holding my phone close by and waiting for the CT results and pathology report from my GI doctor Stan Lee.  I picked him out of a group of GI doctors because of his name.  They all were highly recommended so I picked him like I pick wine.  

Phone rings.  Heart leaps, tears flow.  I know, I know.  I am such a crybaby.  Always have been.  I cried once during a particularly touching Mercedes Benz commercial.  It is Chase Bank wanting to get to know me better.  Grrrrr.

I go with my wife and mother-in-law to Trader's Joe and notice something.  I notice everything.  Colors, sounds, warmth of sunlight on my face, my wife's smile...I even tip the guy playing violin outside of the store.  

Phone rings.  Ugh. OK.  I can do this.  It's the colorectal surgeon's office calling to set up an appointment.  Things feel little bit like they are leaving my control.  I don't have results but here I am making an appointment for a surgical consult.  Backtrack a bit.  I have great friends and many of them are in the medical field.  Jon works at Swedish and we ask him to recommend a surgeon and an oncologist.  Dr Laura Gladstone and Dr Pollock for surgeons and Dr Gold for the cancer doctor.  Gladstone's office is on the line.  Dr Lee talked with her and he set this in motion.  Dr Pollock is the one I am interested in though.  Robotic surgery.  Good hands also.  Don't Google "robotic surgery outcomes and colorectal cancer."  Appointment made for this Friday.  1010 in the am.

Phone rings.  It's the office of Dr Ragulick (or something).  They are scheduling an colonoscopic ultrasound that will tell us what stage cancer I have.  Yeah.  Google that.  Appointment made.  This Friday at 1:50 in the pm. I have to do the bowel prep again.  I start crying again.  RESULTS!  I WANT MY RESULTS.  I know how this works.  We do CT scans all the time.  Results are back in 20 minutes,  It has been 24 hours!!!!!!

I pick up my daughter at Pre-K and get home.  Phone rings.  It's Dr. Lee.  My liver is free of cancer as far as they can tell.  That is very good.  Reduces my mortality rate.  I have a chance of getting liver cancer in the future but I don't have it now.  I do have swollen lymph nodes surrounding the mass in my rectum.  Not so good.  Pathology report is still not back.  Dr. Lee says it is a HUGE longshot that this turns out not to be cancer so we should get things moving.  And we do.  Like a freight train.

So this is where I'm at.  Friday is ultrasound of the invasive nature.  Then I start radiation.  Jesus...

I will say this. I am lucky.  Always have been.  You need to look no farther than who I married to know that I am one lucky son-of-a-bitch. Others have dealt with more than I have and I am grateful for what I have.  I will fight.  One look into my kids room while they are sleeping gives me all the steel I need to support myself.  I might not win but I will fight.
This reminds me of the old joke.
Hear about the guy with rectum cancer?
Rectum?!  Damn near killed him...