Week 6, I Can't Dance No More

So onward we go, into week 6.  The light, I see it.  It's the size of a pin hole, but I can see it.
Monday go to Treatments and Blood draws to see how I'm doing.  By mid day my labs are back and my white blood count has gone into the sewer.  I contact my Hemo-Oncologist office to see if I am supposed to do chemo on Tuesday and later that day they say no-no Chemo this week until WBC go up.  Well,  not a big deal.  Chemo just makes me nauseous anyway.  So Tuesday I go do Tomo and that's it for the day, done by 4pm.  Kim and I head back to the hotel to chill.  About 10pm, I feel feverish.  Kim whips out a thermometer and takes my temp, sure enough 100.4º.  Not that high so I try to cool myself down using wet cool rags.  1/2 hour later, temps up to 100.8º and 15 minutes later it's up to 101º.  Well, when I left the hospital, I was told that if I get a temp again and it hits 101, get my ass back to the hospital to get checked up.  So at 11pm, Kim and I pile into the car and head back over to the emerg. room of the cancer center.  They're at minimum staffing, great.  We're there until 3am.  Poor Kim is exhausted.  They have zero places for the caregivers to hang out in any type of comfortable chair, might as looked at her at told her to go sit on the floor in the corner.  They drew blood on me but the lab was crazy busy as well.  Finally, the nurse comes in with these 2 huge and I mean huge shots.  They go in your hip/butt one on each side.  PAIN.  2 mg each of antibiotic.  Then they send me on my way home.  I could hardly get my butt into the car.  But off we go for a couple hours of sleep to get up for what is now Wed. treatments.  Exhausted, we get up, drive back over, get treatment one, and drive back to hotel to get more sleep.  Get up and do it again and then back, done with Wed.

Thursday, go into Tomo.  Do it and before we leave, radiation Oncologist wants to meet.  He finally saw my WBC counts and wants to cancel treatment for rest of week for me to rest.  Yoo-freakin-hoo!
Kim and I go back to hotel and decide we needed to get out as well if just to look at four different walls, we plan to go down to Chicago for a couple of days.  We pack a little bag and are ready to go.
Kim takes a bag to the car, while I wait in room.  No sooner than she walks out the door,  my body goes into purge mode.  I run to the bathroom just in time to have one of the most explosive vomits of my life.  It's like something inside my body just hit the large red PURGE button and out came everything in my gut from about 6am that morning, and it wanted it all out at the same time.  I am not going to go into more in depth details than that.  Let's just say Chicago was a no go.
Off to the hospital again, and this time they readmit me as a inpatient.  My WBC count has dipped even further since Monday, I have a fever, so they (the hopitalist/internist) ascertain I must have an infection somewhere.  Hooked by up to an IV, they start pumping me with fluids and antibiotics.  It's the first day and I'm here 5 days until Tuesday July 28.  24 hours of no fever to get released and it takes until Tuesday to do it.  So while in the hospital, all treatments are stopped.  Which is good because my neck at this point looks like a nice 90/10 ground meat wrapped around my neck and really painful.
I still can't sleep but also because someone comes in every 2 hours to do something to me or to check something.  And I can't seem to stop the massive flow of phlegm which changes in consistency depending on what sick part of my body wants to take over over the other sick parts.  And the doctors just say it's all part of the process of healing.  This all sucks and I'm not getting treatments.  However, if I get really sick from some infection, what good is treatments going to do me.  Rest is what I need and I try to take advantage when I can get some.  I guess this hospital thing could be a good thing.  Maybe it's the rest I need to finish out here.  Time will tell all but for now I must sleep.

Week 5

Out of the hospital,  I'm sort of a mess but I'm out of the hospital.  Can't swallow or eat real food but at least I have my tube.  With that I can maintain my weight and fluid intake to keep me healthy for the last few weeks.  And that's a very good thing.

Believe it or not, the weeks schedule of treatments went fine.  Had all treatments this week and I seem to be just getting closer to being finished.  The one thing really starting to bother me in the skin on the outside of my neck.  The radiation is really doing a number on it despite how how coconut oil I slather over it.  I have two recommended moisturisers, one a very medicinal smelling lotion and the organic coconut oil.  I choose the oil, my body seems to like it more but I have to make sure that I have  removed it first thing in the morning before Tomo otherwise its like supercharging the radiation.  Like putting baby oil and iodine on your skin then going to the beach all day.  Bad; very, very bad.

Kim's been a trouper.  I know that I am not in the best place in my head.  Getting up in the morning, for what ever that means because I'm sleeping about 4 hours total a night in about 25 minute chunks, is becoming a real mental challenge.  And I know that I am using Kim as a whipping post for my anger and frustration.  I don't even know I am doing it until later in the day after I think about it but by that point it's too late, the damage is done.  I can tell that it's taking a toll on her as well as on our relationship.  I just can't help myself.  Maybe recognizing it is a good first step to fixing it.

So that's really it about week 5.  I'm a physical and mental mess but I got 2 weeks until I am finished.  Put the blinders on and look for the light at the end of the tunnel.

Week 4, Where it all goes to hell

I'm in tough shape.  We have to make a big decision on what to do nutritionally.  I have got to get at least liquids in me but swallowing is not an option.  The pain associated with it is unbearable.  So Kim and I make the hard decision that I need to get a feeding tube inserted into my stomach.  So we go to the clinic first thing Monday morning and ask to see Nurse Judy or Dr Chang.  Judy was available.  I needed to take my vitals first thing, so I jump up on a scale and weigh in.  Wow, Since my Friday morning vitals check to Monday morning, I have lost nearly 8 lbs .  Clearly a weigh loss method, probably not one that any doctor would recommend.  Nurse Judy was totally on board the feeding tube request and went off to make arrangements while I went off to do treatments.  Tuesday 10am I got scheduled for feed tube surgery.  Good, only one more night of painful restless sleep then surgery.  Only thing I had going before surgery was the 8 hr fasting.  I had that covered.
I had really fought mentally to not go the feeding tube route.  I had heard and read that it was a bad
way for nourishment replacement, you miss out on important vitamins and other stuff only real food
supplies.  Well screw it, I can't swallow real food so now what.  Tube it is.  Fight over.

The tube procedure is pretty simple. They knock me out with drugs, and then with endoscopic tools insert the tube and stomach clamp or button down my throat.  Cut a small incision from the middle of my abdomen into my stomach, them pull the tube out so the button "seals" the whole up on the inside and there is basically a nut, as in bolt and nut, on the outside that tightens down the outside skin and seals up the hole on the outside.  I wake up and there's a tube hanging out of me.  Took like 15 minutes
while I was out, bada boom bada bing.  I was then sent to inpatient for overnight observation for any
kind of infection or complication and it is where I learn to "eat " with my tube.

Well isn't my luck that now I can get nutrients and I develop a fever.  It gets up to 102.6º before they give me Tylenol liquid (through the tube) to bring my temp down.  So now I can't leave the hospital until fever is gone for 24 hours.  It's now Wednesday, August 8. Still doing radiation treatments although they hold off on chemo for the week.  I get released Sunday afternoon.  Guess that's better than developing something else.  No fever, feel good, and getting nutrients. Also had a visit from pain management dept.  No one ever mentioned them to me before I was inpatient.  Now I got drugs for pain, good drugs, make pain go bye bye, make Jay always sleepy.  I may be able to finish this shit.

Week 3, we have an enemy ammoung our midsts

Finally getting my wishes, treatment and a break the the higher temp.  The high temps were just adding to the stress, the treatments were going forward and that was good for stress release.  Kim even got an extra wish at the beginning of this week.  My head was starting to look like the baby doll that was loved for one too many years or another description was with the right dialog, you'd swear you saw me last week on "Dexter".  Either way, I went a hair studio and asked for a clipper cut with no guards.

Here's a before and after photo I made up in photoshop.  Ok, not too bad of a transition.
Especially once I get a little sun on the part that has never seen sun.  It's kind of working for me so I think I am going to keep it for a while to see what the winter brings!  I mention all these things because they were the highlight of the week.  The rest of the week was like taking a #2 pencil and jamming it in my ear.
The radiation was starting to do the nastier things I was told to expect.  My neck was now turning a beautiful sunset red and starting to itch like a bad sunburn.  Nurse Judy, the head radiation nurse recommended 2 treatments for this; one a man made lotion and the other Organic Pure Coconut Oil.
One smelled yucky, the other-coconut.  She said that there were a few more but be should wait to see how bad a get.  "Remember, it's only week 3!"
So as far as the treatments themselves, all went well accept Tomo.  The radiation, besides killing off taste buds and toasting the outside of my neck, was also starting to dry out my mouth and sores on the insides of my checks and on my tongue were developing.  Some were close to the areas around my teeth.  Some days, my tongue would even be swollen to add even more fun to the party in my mouth.
By Wednesday, somebody had been up all night but when I went in for my 9am treatment, the party was still going on.  I even felt like I had been to the party or lived below the party because I had had a terrible nights sleep.  So I go to put my tooth guards in.  They wouldn't so I wet them down worked them in right down on some sores.  So needless to say my  Twilight Zone Tomo Treatment came with a new ride enhancement that morning- pain.  I got finished and took my guards out my mouth was bleeding.  Guess I needed a solution before the next one in 6 hours.
Finished the morning rounds and Kim and I went to lunch.  What to eat, everything was tasting like Soilent Green.  Even certain types of bottled water tasted like garlic infused blah.  Picked up a few things that looked edible, sat down, choked down a few bites, and was unsatisfactorily finished.  Finished my afternoon on a happy note remembering that I had a prescription for a temporary mouth numbing solution with me.  So that was my new addition before Tomos, swish the pink stuff
10 minutes before Tomo.  Tomo just gets better and better, don't ya think?
By weekend end I just pretty much stopped eating unless Kim cooked it or made it for me. And because of that, took her out for dinner to a Sushi / Some Japanese / Mostly Korean hole in the wall.
What ever she ordered smelled fabulous and she ate until she could eat no more.  And she was happy!
I, on the other hand, not knowing what would taste good.  Wait, let me rephrase that. It should have just said what would have tasted, period!  So I tried safe things.
Miso soup, check.  California Roll, check. everything else so forgettable I forgot.
Miso soup taste bud translation=warm watery substance tasting like diluted motor oil.
Cally Roll = Cally roll, just worst cally roll I have ever put in my mouth.  Oh well this was about Kim, not me tonight.  So, we'll go back when my taste bud come home from vacation.
Rest of weekend got even worse for me.  Saturday night my throat got so sore, swallowing was not possible any more.  Had to force myself through the pain to get water down it live.  Sleeping was in 2 hours blocks so I could get up and spit out all the phlem that I had collected.  Started using the Pink Juice to numb out as much of my throat to get food and water down.  That worked for the weekend but was not going to work for possibly 5 more weeks.  We had to come up with a plan B for week 4.
DAMN YOU WEEK 3, I SHAKE MY FISTS AT YOU, I 'D STOMP ON YOUR HEAD IF YOU HAD ONE.  YOU HAVE REDUCED ME TO A 3 MONTH OLD BUT NOT AS CUTE.

Rollin', Rollin', Rollin', Keep them Doggie Rollin'

I also want you all to understand our living arrangements during all this.  Kim, bless her heart, spent hours on looking for someplace we'd be comfortable in for 2 months.  Zion, IL is small town USA thus are the choices.  There is a med priced Best Western hotel.  Nothing special its a best western.  Bed/bath/shower/Flat Screen/clean.  everything one needs .  Except 2 people in 500 square feet with a queen bed.  No amenities or restaurants in the hood. 3 blocks from hospital but we'd be driving all the time to do what ever.  Rate was great / Clinic had a corp rate of $40/night.  It will be a fine backup.
Problem is, after we get going I'm going to have issues with eating / swallowing / drinking / sleeping
as the list is potentially long for side effects.  Ideally, a corporate rental for 2 months would be what would fit our needs. A 1 or 2 bedroom furnished condo.  We give them money, they give us keys.
How hard would those be to find?  Pretty fucking hard unless we want at least a 35-40 minute commute to the hospital 5 days a week.  Some days I got a 15 min. radiation morning thing with it's evil twin sister Afternoon 6 hours later for 15 min.  A 45 min commute don't play in Kimmy's sandbox especially if they cost close to $3600 a month for a one bedroom and we got to get up to be at the hospital at 7:45am but very cool neighborhood.
Then we checked into just renting a one bedroom apartment for as legally short as possible.  No one would go less than 7 months and then it began after that.  plus security deposit, plus an out of state banking one time fee, copies of our rental record, copies of our state & fed past 2 year tax returns.  Then it was unfurnished for the price so everything you'd need for living.  Forget it, too much hassle.
(which was playing on the overhead speakers "Do the Hustle" as we were leaving)  Ok, that was overkill.
We changed our priorities the next day after watching HGTV's Property Virgins that evening.
We went from what we thought we wanted to what was a priority need and listed out our priorities:
Needed a space large enough for 2 adults that we could cook in to minimize dining out.
Maximum Distance from CTCA - 15 miles one way
Needs to be quite location, not have the rush of metropolis around us for sleeping/resting
Close to amenities / groceries / gas 
   At least a Queen bed
   A small couch it sit on
   A small Kitchenette to include 1/2 size Refrigerator or larger, microwave, sink, at lest 2 burners      
   Dining table or Desk for eating / working
   Free Internet and Cable television

Ok, sounds like an Extended Stay hotel situation to me.  There's one - Candlewood Suites in Pleasant Prairie, WI (a "suburb of Kenosha?"). 20 miles away from CTCA. So we go check it out.  I've stayed in a lot of different extended stay hotels, every chains got a least one brand if not 2 these days.  Candlewood is from IHG (Intercontinental/Crowne Plaza/Holiday Inn) and is ICG's only
extended stay.  Location bad- 2 blocks from the freeway.  It's ok inside, extended stay rate was fair considering normal rates for mid priced hotels has just gone through the roof lately. Kim was not happy with the location, much too loud, too much traffic. The girl has been in the mountains too long if she thinks Kenosha Wisconsin is to frenetic.  On we go and check out other hotels in the area, oh yeah, did I tells out it was 104º outside.  We check out a few more hotels that will even talk to us about a 2 month
stay, which you would think would be a lot but surprisingly the numbers are low.  Last hotel we see is a brand new Holiday Inn Express. Yes they have some extended stay.  Room matched up to our needs.
Location good for Kim across the street from elementarty school, hospital, 2 blocks off of major road for noise, we take it.  The downside is that it is on the far side of distance limit, 15 miles from hotel but all back road highways with little traffic, even in rush hours.  So if I ever refer to going back to the hotel,  that's where we are, Pleasant Praire, WI.

Week 2.0

so this is what I am really calling the second week of treatment. July 22-28. the first full week of treating my cancer.

Lets take a moment to recap and clarify:
May 23     Biopsied for cancerous cells-July23, confirmed 1 week later July 30.
July 23      2 months of confirming/consulting/poking/prodding/scheduling.
Ok, wanted to get that out of my system before a pissed off just one more time, the process is as slow me writing this blog!  I've got drugs to blame for my speed of writing ( sucks when you are mid word and you just dose off for 6-7 minutes), The big question is, what are the excuses all of those other professionals have with there lost time!?!  Another statistic?  Just another finger pointing at yet another bad health care / business model basic?   It's going to be a long summer.  Just getting through this one post is going to be tuff.

So the day to day stuff, go back to the scheduling post.  That is what Kim's and my life revolve around
and will revolve around for 7+ weeks.  It has ebbs and flows but it will be our lives between the hours of 7am-6pm.

So I go into my TOMO radiation room and the Tomo Nymphs are waiting for me.  Go in, put in my dental plates, and was told to lie down before the Radiation Overlord TOMO.  I lay down and the 2 spritely Tomo Techs both drag my mask over and say you ok to put the mask on?  Yup, and down it comes.  And as it get's closer, they start locking the bitch down to the table and I start getting a little cluastrophobic and they say help out by wiggling your face around  and touch until it fits and i cant breath its smushing my nose and cant see out because Im to close to the mask to get any thing for the brain to focus on and the last mask lock goes down and the tech says ok and I still cant breathe and start flailling my arms around and point to my nose and they quickly unlock the mask and lift it off my face and one of the girls says "Ok, that went pretty good for your first time"  They give me a moment to catch my breath and mentally retrace what just went down.   I take about a minute breathing, mentally think I got the process down and say OK, lets give her another try.  This time much smoother and since I figured out the face positioning thing out, the mask went on, locked down, was I was breathing.  Check.  Ok here we go say's the other tech and I start to move into the machine.
Like a very surreal Disney ride you glide into the thing and for five minutes it hums along figuring out todays position my mask is in and adjusts the radiation burst to match up to todays alignment. then we glide back out to set up for radiation.  Between just being able to see a little and using sense of hearing and motion the most,  I am building a mental movie of what it being done physically to me.  So Im laying there listening and not moving cause I'm locked down to basically a 2"x 24" black board and I begin hearing this weird clicking/clacking sound coming from behind my bed,  a weird old worldly clockworks sound yet cybernetic in operation, like a Jules Verne meets Gene Roddenberry kind of clicking.  Then it stops.  What was that sound for.  I almost figure it out and then I start to move back into the machine.  This time it's quiet.  No gentle whirring.  Just the hum of a machine that's turned on all around you.  And in that silence I figure out what the clicking sounds were.
It was collimator's aligning themselves to the start position in the TOMO machine.
And with that term an explanation of what the collimator do/are for those non tech types.

The picture on the top depicts me, the handsome and debonair grey vertical stick being blasted with radiation.  Notice that radiation without collimators tend to shoot radiation beams everywhere and are sort of out of control and radiating any thing in site like the old style therapies.  Oh the Humanity!!

Now when we use collimators, radiation is controlled allowing only beams to pass threw

the openings.  We control the vertical, we control the horizontal, kind of like the Twilight Zone

except in a good way.  

OK, Tomo is a bit more advanced than that.  Tomo's radiation generator rotates around my body 360º.
Somewhere between the Tomo Radiation Generator (let's call it RadGen)  and me ( the handsome and debonair vertical grey stick), lie hundreds of little computer controlled collimators.  As RedGen makes it's 15 minute journey around my body, the bizarre clicking is the sound of these crazy little things resenting themselves for the next drive by shooting of my neck by RenGen.  And because its going 360º, so do all the sounds so when I'm inside the machine the sonds circle around my head in super surround sound so the whole thing is like my own personal bad 3D SciFi movie in my head. And after 15 minute the Tomo Nimphs come out, break the seal, and I am free to fly out into the world.  Until the next appointment.  But that's Tomo, twice a day, 6 hours apart, 5 days a week for 7+ weeks.  So that's about the week.  End of week comes, Kim and I have the weekend off, it's early enough in the treatments that my reactions a small indigestion and some foods are starting to taste a little different.
There's a Renesence Festival going on in Kenosha and it's also Taste of Wisconsin in Kenosha right next to Lake Michigan this weekend as well.  We had a lot of fun because it was probably the last full weekend we got

Week 2

Kim and I decided we needed to have one of our cars up in Illinois.  Since I had to wait for my simulation to program it's course its pattern through my body,  We both now had 5 days (Kim 10), to get back to our lives in order before we started Full Throttle with treatment.
Kim flew home on Sunday to get a few things in order.  I had chemo on Tuesday.
My Hemo-Oncologist cancelled treatment.  He forgot to get Blood Work done up on Monday so no Chemo on Tuesday.  So, I spent the day with my sister in Milwaukee.  I drove my rental up and spent the night.  It was good.
We went to the airport on Wednesday and I flew almost home to pick up my wife and my car which were at Kim's mom's little cabin in the woods in Maggie Valley, NC ( actually outside of Asheville,  about 3.5 hrs off closer to Chicago)  Had a good night and got to sleep in before jumping on the I-40 chuck of I-system for the next 2 days.  It's a pretty drive through the Tennessee Mountains and Kentucky Horse Country but get's really flat and ugly when you switch to I65 and head into Indiana.
Kim and I decided to stop in Indianapolis for the night.  Neither of us had been there before so we had to check it out.  We stayed an extra night.
Indy is actually a very cool and laid back city.  Lot's to do during the day, unbelievable restaurants and night clubs, major league sports city.  I was really blown away.  Kim and I were actually going to stay a couple of nights on the "Miracle Mile" in Chicago but we didn't make it.
Check out Indy, World Travellers