There is no sign of Alien life on this planet.

We, as in Kim and I, went back last weekend to Chicago for my post treatment 6 weekend checkup.

Had PET Scan and CT scan and blood work done on Saturday with doctors consult

on Monday.  Saturday's not the day to have testing done at a Mon-Fri normal operation kind of place.

They had a skeleton crew on and they were all on the "odd" side of life, not to mention lacking in a little bedside manners and skill. 

But I got my testing completed and now had to wait until Monday for the results. Needless to say, things were a little tense for 48 hours.

Sunday went to see my mom in Milwaukee, who is slowly loosing the battle with dementia.

She is 82 and has hallucinations and memory loss and it is getting progressively worse, although slowly.  She still lives by herself in her house of 50 years and motors around pretty well, although minus her car and we started having help coming in twice a day to oversee her eating and taking her meds.

My sister, who's a saint in my book, has taken on overseeing not only her day to day activity but her financial as well.

Mom curses her out and treats my Sis like dirt, but Sis carries on.  She gets hurt occasionally, but just sort of blows off the pain and continues to forge on.  At the rate of my mom's decay, in 2013 we may have to make the big decision of taking her out of her house for a "home" or bringing in a full time nurse to care for her.  She's already had her driving taken away, which really torks her off, but she got lost one day for hours (she was only 1/2 mile from her house) and Sis had to call the cops.  I feel for her not being able to drive but it's the best decision to keep her and the world safe!

So that was a short and mixed emotional visit.  Back to the hospital for my results.

Saw both my Oncologists and they both confirmed from the tests/scans that I had no visible signs of cancerous growth left in my body.  Apparently, the 70 radiation treatments, 8 Chemo's, and the rest of the crap that happened over the summer did the job.  

I was declared a free man!  There was a great grey funk that lifted that afternoon and it was very difficult to hide our joy as we passed the many not so lucky other patients as we left the hospital.

I now have to finish my recoup and in February go back up for a follow up with testing again to see if the all clear is indeed all clear.

I am still recouping from the radiation.  I'm just starting to eat solid foods.  This weekend I ate 1/2 of a pancake with lots of butter and syrup and about  2/3's of a large cup of coffee with lots of creamer.  Took a while; my throat still doesn't swallow properly yet, but it's a start.  Things I used to like, garlic for one, still taste bad.  But it's baby steps at this point.  It's only been 7 weeks since my last radiation.  Some patients take up to a year before they start eating solid foods.  

Timely for the week of Thanksgiving, I am feeling very thankful and relieved.  There has been a huge stress that has lifted off our household.  Kim and I can jump start our lives from what looked like, 6 months ago, to be a dead '75 Gremlin sitting in the driveway.

I will continue to post as I recoup and that life for everyone is moving in a positive direction.

I feel that if you are in a low point in your life, have a little faith and patience.  Life will turn for the better if you focus on the positive and eliminate the negative from your surroundings. 

I have a renewed faith in that statement.

November and the leaves are gone

It's November 7. The leaves changing colors is over and thank the heavens the election is over as well.  Now we, as in the U.S.of A., can get back to non partisan bickering again and accomplishing nothing in way of rebuilding our country!  There has to be a better way for our democracy and people to come together better than a natural disaster.  It baffles me as I sit at home and slowly recover from treatments.
And I am recovering!  Slowly, ever so slowly, but moving forward in a positive direction.
This morning I am actually enjoying a 50/50 blend of coffee and hot chocolate.  I really miss that morning coffee so much that I'm making myself drink past my semi sore and semi clogged throat.
I am also very nervous.  On Friday I go back to CTCA for my 6 week follow up since my last treatment.  I will have blood work, CT scan, Pet scan, and Dr's consultation as to how I stand in the fight beating my cancer.  Kim and I are both very anxious and the anticipation is grinding on us.
I haven't been very open and chatty for the past 4 months.  That's not something that is new, I have always been withdrawn emotionally at time of difficulty, it's how my right brain logic works.
Withdraw, process, proceed!  In the words of Spock,  "It's all very logical".  Not very emotional, which is where Kim is on the Brain vs Heart Life line.  Here's a diagram:

Emotion___Kirk________Kim_____________________________Jay___________Spock____Logic

So, off we fly Friday morning, all pensive and wound up tighter than a drum.  I will post next week
what the findings are and what is to be the next direction in my journey.

November, it's such a "brown" month.

Sunday Morning in the Fall

Sunday morning, the 19th of October.  It is an absolutely perfect Chamber of Commerce morning here in the Mountains.  50º going up to 68º, painfully clear blue skies, and the foliage is at the height of the color change.  By next weekend,  it will become a torrential downpour of leaves as they all seem to have changed colors together this year and won't be hanging around much longer.  The house is still and quiet, the dogs have been out and are back asleep, the girls are still sleeping from a well needed evening of revelry (daughter Erika came home with a girl friend for the weekend from college).
And I am up, fairly rested from another night of semi-sleep and a restful day yesterday of college game day couch potato-ism.  Today, I get to drive the girls back down to Greensboro so they can get back to the second half of the semester and Kim and I get back to living in our "empty nest".  I think she really misses having Erika here, considering the brilliant conversationalist I have been since coming back from treatment.
There hasn't been a lot to talk about when your life consists of sleeping, taking liquid diets 3-4 times a day, and having to be in semi lock down because my white blood cell count is low.  This situation is keeping me from going places for fear of catching a "public" disease like the flu or a cold.  A cold could put me in the hospital again in a matter of days if it developed quickly and turned into pneumonia.  WBC's are the defense fighters of the body and mine have been on overtime since June.  The reinforcements are arriving slowly everyday with my blood counts going up but slowly is the definitive term.  Not eating real food does not help the process.  Nutrients are needed to make me stronger, the liquid food is merely to keep me stable, but I am beginning the process of tasting and eating foods again.  Not much mind you.  7-Up is a winner.  Those little effervescent bubbles make my mouth happy by cutting down the phloem attack and cooling temperatures as it goes down my still slightly sore throat.  Sherbet is also good, although the acid in the citrus flavoring tends to bother my throat.  Pretty exciting fair, eh?  It's a beginning.  And that is my new mantra and attitude.  I have been too negative for a long time.  I've finally decided it's time to get off the Pity Bus and take control of my body and my life.
My friend Steve sent me some very positive recordings about Self-Healing through Guided Imagery.  They describe what Guided Imagery is and how to focus meditatively on connecting with my body to basically create a conversation with it to help in the healing process.  It sounded a little odd at first but I am taking the time to do it every now and then and it helps.  If anything, it is refocusing me in a positive direction instead of being such a downer all the time.  That in its self is huge I think, positive vs negative.  I have noticed it has generally helped in all aspects so this is good.
This week I am going to Vegas for a survey of venues at Mandalay Bay.  Work has begun again.
I'm feeling about 80% if you don't count the eating thing and I think that is good.  My hair is growing.
And the world is changing and preparing for the next phase of life and so am I.

Yeah! I'm home , I think

Dorothy couldn't have put it better.  There is no place like home.  Your own stuff, your bed, your pets,
your family.  It was a long summer but now I can get back to a little R&R at home and get back to working.  I was fortunate to have had enough money stashed away for us to make it but I really need to get back and start finding jobs again.
The big rub in all this revelry about being home is that no one from the cancer center sat down with us to discuss what the recovery period for told.  In my mind, I thought 10 days to 2 weeks of laying low and resting while working at getting my swallowing back up to where I can be eating solid foods.
No one told me that my body would be a tortured radiation sponge.  I was home no longer than 2 days and I was off to see my local doctor.  I couldn't keep food down in either direction.  I was totally gagging 24/7 with phlegm build up in my mouth that usually keeps me no farther than 15 ft from a bathroom to rid myself of the nasty stuff.  She admitted me to the local hospital.  So I spent my 2nd-5th days "home" lying in a hospital bed, hooked up to continuous fluids IV, and being tested for something I knew I did not have (like I caught a virus on the plane home).  Got back home at 9:30 at night after being told I was going to be released at 9am that morning.
Love my wife she's a saint.  But I feel totally using and abusing her.  She was and is exhausted in this process as much as I am.  The phlegm is so bad that I only sleep at night maybe 3-4 hours in chunks.
I have to cough and spit out stuff constantly.  So I have driven Kim from our bed.  She is now sleeping in Erika's room at night just to get sleep.  And I know the anxiety is getting to her because she can't fall asleep easily and gets up very late in the morning looking like a train rolled over her during the night.

It sure would have been nice had someone from CTCA sat down with use and given us a little precursor to what was to happen with me during my recovery.  It would have lessened some of the frustration I have.  Yesterday I went to some forums on Head and Neck Cancer survivors to read about others recoveries.  This phlegm this is not a short term thing.  I read one guy had it for 8 weeks, another for 4 months, and still another for 6 months.  Not very conducive for a work environment.

I am not in a very good place mentally.  Last night I fired off a couple of emails quitting a job that I have been contracted for since the beginning of August.  I was feeling about 95% back then so what was to not take it, the job was 2 months away.  Last night I bagged them, I was supposed to leave next week.
There is no way I could travel to Europe for a 2.5 week show.  There may be repercussions but what can I do, I can't be like this and be working a production.  My life is a total production in itself these days with the script writers coming up with new material daily.  I need to find a focus point to get me headed toward a better place.

Why is Monday always a blue day

It's Monday the 10th, a day after my 55th birthday.
went back last week and finished the week out with my Radiologist making me a new mask and informing me that I will be continuing treatments until at least the 21st of this month.  Needless to say it was a very hard weekend when I thought that tomorrow was going to be my last day of treatments until November. (if not treatments, at least checking the status of what my body had done with the bad cancer cells.)  Monday Morning was a ripper.
So away we go again.  No chemo at least, which was really the one factor that was ripping my body apart.  And in a week, no wife for support.  It's time to get back to work for her.  I personally want to thank everyone who works with Kim who donated sick leave to her so she could be by my side for the last 3 months.  There were many days had she not been here, I would have gotten on a plane and just said forget it.  Rather selfish but I was mentally done and she brought me back around.
So now I go and just focus on all things positive.  Get up, try to start exercising again, and just work on being happy.  Happy=Healthy as far as I'm concerned.

September 7th and I'm still going

Hello, my continuing bloggers.  It's still not over.  The Fay lady is not singing in my world.

I'm back in Illinois as what I'd like to call, Overtime.  I have 18 more treatments as of today to complete

of tomo radiation, 2 per day.  'this make me very sad for I now have to forfeit going to to See Peter Gabriel in Montreal in 2 weeks for the following Tuesday the 18th for it is also my official release date at this point in time -  A Special 10 stop tour in North America celebrating the 25th anniversary of the "So" album with most of the original performers.  It was little small engine that pushed me through all the summers crap and  now I can't make it.  Deep breath, Ce la vie.  Hopefully my bestst fiend and her best friend will love Montreal for 5 days, how can they not.  They can eat and drink and enjoy the beautiful city and once in a life time concert I have been thinking about for 6 months  Whoo hoo! 

I get to fly home to mt house in the woods to further my convalescence.  It's not as bad as I make it , except for the easting and drinking part, oh and the other thing, life yea I get that back.  It's a melancholy finish to this part of the ordeal.  I then get to recoup and the in early Nov.  get to fly back to see how all this testing and treatment to fight off the cancer.  See like I sais before, the Fay Lady doesn't get to sing quite yet, doesn't seem at this point there wil be and end.  Just skip over 4 months of hell and resume where I left off.  Ok, I'll take that for know.  Beats laying in a hospital bed whithering away toward a slow death with lots of self loathing pity on the side.  That concert was my spring board.  Guess it did it's job.  More to come if things get interesting,

Week 7, R&R

This past Monday I am still in hospital but the Dr in charge claims that if I go 24 hours without fever, he would release me.  So I rest with cool thoughts in the my head.  All the rest of my doctors also come and see me on Monday.  The radiologist has given me the rest of the week off from treatment to let my neck heal some.  he agrees that we can't keep pounding radiation at my neck, it'll never heal properly.
Cool, 4 more days off plus these guys don't work the weekends or holidays, that's like a week off.  My Hemo-Oncologist has also postponed Chemo for a week.  Whoo-hoo,  No treatments for a week.  Kim and I put together a plan.  We can go home, like get in the car and drive home, if all I have in 6 more days of treatments left.  We can fly back up and suffer in a hotel in Zion for a week.  All we have to do is get me released from the hospital.  Tuesday am, the Dr says I can be released today.  All I have to do is just finish down a couple of IV's.  Cool couple of hours and by mid day we're gone.
Surprise, one IV takes 1.5 hours, the other 6 to fully drip out.  6 hours- I complain.  Squeaky wheel does get something sometimes.  Dr cut's order in half, only 3 hours.  So we're out, not mid day but by 5pm.
Kim's made all the arrangements and is chomping at the bit all afternoon.  She pours me into the car and off she flys into Chicago rush hour traffic.  She's a trooper but is not a city girl any more.  By the time we get to Indiana, she is totally fried.  We get to Lafayette, Indiana, about 3.5 hours from the hospital and quits for the night.  Which is ok, she's toast, I'm toast, we changed time zones so it's 9:30pm.  Sleep for tomorrow is a very long day in the car to make it home.  But we do it, I drive a few hours here and there but by 8:30pm, we are pulling in the drive of our house.  It's been almost 2 months and it feels good.  So we get to rest the weekend at home.  Kim sleeps 12 hours day one, guess she needed the rest as well.  Daughter Erika comes home for the weekend.  Now that I'm home I don't want to go back.  But I only have 6-7 more days of treatments, then it's a 6 week rest and then another evaluation as to the status of cancer.  I may even go back to work, we'll see how the eating thing goes.  But for now, rest at home is well needed.  I need more mental then physical so I can get back up for this final week.
It will be difficult, like falling of a horse and getting back on, but I am sure it will be worth the effort.

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

Week 1

Week one you should already know about.  I had what was supposed to be a 2.5 hr chemo treatment on Tuesday July 10.  I took 5 hours.  OK, the treatment actually took 3.5 hours, it took 1.5 hours of waiting for some one to put an IV in me at the beginning of the session first.  And actually it took 1.5 hours of waiting for someone competent on the nursing staff to get an IV in me.  I went through 3 nurses before they had the IV in.  It's hospital policy when setting an IV that if you can't get one in after 2 tries, another nurse must then try.  And so yes I did say it took 3 nurses.  The first 2 were very nice people except they cant stick a vein.  Granted, I have always had difficult veins to draw blood of set an IV.  But really, 5 attempts at a hospital seems a bit extreme.  The final nurse who actually got it in my arm was an older nurse in her 40's.  She called herself Nurse Ratchet although her name tag said her name was Nancy.  She was cracking me up.  Totally bitched about how all the young newbie nurse can't use a needle, how schools and hospital facilities don't spend enough time (= $$$$) on training nurses to be better with needles,  and in her days as a newbie they spent hours and hours poking oranges, volunteers, and themselves and were tested on it- it was part of the job description.  Blah Blah Blah, she was on a roll but she was right.  It took her about 30 seconds once she had all the pieces parts she needed to set the IV.  In it went, and out the door she went as soon as it was in, back to what ever her regular nursing gig was for the day and left the clean up to one of the newbies.
Finally got taken back to an "Infusion" room; a little 1/4 size hospital room set up for doing infusions.
They have about 50 rooms for infusions, most the size of my space but there were also larger room for those who needed Chemo Infusion for 8+ hours.  I guess my 2.5 hour infusion was nothing in the big scheme of things.  It was very uneventful and I left for the hotel by 5pm not feeling bad at all.  Had the next day off and laid low waiting for Chemo reactions.  There were none.  I was so disappointed.
Thursday the 12th I had all my Tomo simulation to take care of.  Jumped into the shower and noticed that I was washing a lot more hair off my body than usual.  By the time I got out, I swear there was a months worth of hair that had come out/off my body.  Guess I was having a little chemo reaction.
Went and did the Tomo Simulation, got my "mask", I was all set to go and start.  Except for the fact that it took a week for the computer to calculate it's targeting positions.  I had to wait until the next week to check the simulation and mask fitting, have another uneventful Chemo treatment on Tuesday,  and we would start full treatment bright and early in the morning on Monday, July 23.
Oh, and did I mention that I was loosing my hair in an exponentially fast fashion over my whole upper half of my body.  Great!

Treatments and Schedules Oh My!

I decided that at this point, that I'm going to break down each weeks treatments and schedule.  That way you're all in this with Kim and I on how things go. My week to week schedule is relatively similar, with some time changes here, appointment moves there.  But all in all, this is sort of how our weeks go.
(I'll explain the therapies later)

Monday-9am Tomo Radiation, 10am Hyper Temperature Therapy, 12pm Pink Light / Speech Language Therapy, Grab some lunch,  1pm Lab Blood Draw to track my blood stats week to week, 3pm Tomo Radiation again.  Done for the day.  Banker's Hours, right?

Tuesday-9am Tomo Radiation, 10am Pink Light / Speech Language Therapy, 11am-3pm Chemo Therapy, they bring me a some lunch while I'm being pumped full of poison,  3pm Tomo Radiation again.
Done for the day.

Wednesday-9am Tomo Radiation, 9:30am Meet with Radiologist and Nurse, 10am Pink Light / Speech Language Therapy, Leave hospital to run errands or laundry or back to hotel to nap, 3pm Tomo Radiation again.  Done for the day.

Thursday-9am Tomo Radiation, 10am Hyper Temperature Therapy, 12pm Pink Light / Speech Language Therapy, Grab some lunch,  1pm Acupuncture Therapy, 3pm Tomo Radiation again.  Done.

Friday-9am Tomo Radiation, 9:30am Meet with Radiologist and Nurse, 10am Pink Light / Speech Language Therapy, Leave hospital to run errands or laundry or back to hotel to nap, 3pm Tomo Radiation again.  Done for the day.  Weekends off to do whatever we feel like.
Not bad.  Since we're not working, pretty easy schedule if you just look at the treatment process like it's a job.  And that's what each week look like for 7 weeks.  Sometimes I start earlier, sometime later.

Now the therapies.  I already gave you the poop on the Tomo Radiation.  Once you have your mask and your set up with the computer, it takes roughly 15 minute tops- 5 minutes to do the daily alignment and 10 minutes of radiation.
Next is the Hyper Temperature Therapy.  The basic premise behind this is that you super heat the cancer cells via this Scify movie looking object on a articulating mechanical arm.  There is a large orb of water at the end of the arm about the size of a grapefruit.  Apparently, cancer cells are very susceptible to heat while normal cells are not.  So, I lay out on a table so that my left side of my neck is exposed (where the lymph nodes have the carcinoma)  The therapist then places a piece of cellophane over my neck, places temperature probes up and down my neck, places another piece of cellophane over the probes, then takes the Orb and pushed it down onto my neck. Inside the arm somewhere is a microwave projector.  Yes, they're microwaving my neck just like yesterdays leftovers.  The projector shoots out through the Orb aimed at my neck.  The Orb actually has water in it and acts like a radiator to cool the microwaves before they rip my skin apart (like that hot dog you had for lunch)  So I lay there for about an hour, the time it takes to bring my neck temp up to 104.3º.  The theory behind this is the cancer cells are weakened by the heat and thus more susceptible to getting killed off by the radiation while leaving the healthy cells to just cool off and not take as much radiation.  Any alternative to killing off healthy cells I'm all for, so I do this treatment twice a week for about 1.5 hrs each time.  It's not very pleasant and it's hot but hey if it works, what else have ya got!
I have a Speech and Language Pathologist assigned to me.  With treatments going on all over my neck, there is a chance to loose the ability to talk and or swallow.  I was told this by my Radiologist on my consultation.  Mike the SLP is a very nice guy and is always looking for ways to keep me swallowing, talking, and using my mouth so I don't loose any abilities.  I have tongue exercises and swallowing exercises.  He also has his Pink Light Therapy.  I am one of the first patients he's been using this therapy on.  It was invented for NASA (aren't all the cool things of the world somehow connected to NASA).  It is basically a high intensity LED hand held light.  Hmm, right up my alley, eh?  Apparently, this light has huge therapeutic value when dealing with skin rashes & sores or mouth sores.  I just hold this thing up to each side of my neck for 80 sec., and that's it.  It has something to do with the high intensity of the light and the color temperature (it's this weird pinkish redish color) that skin and mouth cells love.  Vets are also using it on horses to speed up recovery on leg injuries.  Can't tell it's helping but it can't hurt so I do it!  Weird Science at it's finest hour.  I do have this odd craving for oats!

Next, Chemo.  My Hemo-Oncologist had 3 choices for my type of cancer.  One was using Cisplatin, one of the oldest and most used Chemo drug.  Cisplatin is one of the most prescribed chemo drug, take a long time to administer, and has a very long list of side effects.  It was on my "Do Not Use" list and I told the Dr. that Cisplatin was not an option.  So he came back with 2 other choices.  One was for Erbitux.  Erbitux is not a traditional Chemo drug, is primarily used for my type of cancer, the nefarious squamous cell carcinoma when used in conjunction with radiation.  However, because of my heart attack, Erbitux does have a chance of creating heart problems.  I guessing that's why I'm not using it.
Then last choice, in conjunction with radiation, was the cocktail that I am currently using.  Therapy begins with a Benedryl drip followed by a bunch of fluids, then the cocktail of a 1 hour drip of Carboplatin followed up with a 1 hour drip of Taxotere.  This happens once a week and supposed to be doing radiation at the same time.  The cocktail breaks the cancer cells down for the radiation to finish up the job of killing off the bad cells.
Last is acupuncture.  It is the traditional process, if you've ever had acupuncture, of sticking multiple needles across my body.  Our concentration (the Acu DR. and me) for me was to boost the immune system as well as circulation.  I also wanted some of the nausea from Chemo to be alleviated with acupuncture / magnetism than with taking just more pills to the daily growing list of medications and supplements.  Believe me, if you have never tried acupuncture, go try it.  It works really well on the "Big Paint Stroke" ailments.  Acupuncture is a benefit of choosing CTCA for my hospital/clinic.  CTCA offers almost all of the "alternate" medicines; massage, acupuncture, SLP, Chiropractor, etc, as a freebie on the facility.  That's another reason we chose CTCA, all of this for free and available on staff and if Kim wanted any of the services (like a massage), it cost her like $20 for a 30 min massage.
So that's the schedule and the treatments.  I can now finally get to the week by week stuff you all have been asking me about.

 

Tomotherapy, Radiation of the Future

I have to digress a bit to describe Tomotherapy and the process it take to get set up for it.  Tomo is one of the reasons Kim and I decided to go with CTCA because very few cancer centers are using this type of therapy.  It seemed to us a less evasive approach to radiation, especially in the neck and throat, that could cause the least amount of damage to areas like the Salvation Glands, voice box, ears.
Here's a short summery of what Tomo is:

Planning. Before beginning a TomoTherapy treatment, the doctor uses 3D images from a combination of scanning technologies (such as CT and MRI) and special software to establish the precise contours for each treatment volume (tumor) and any regions at risk (sensitive organs or structures). The doctor then decides how much radiation the tumor should receive, as well as acceptable levels for surrounding structures. The TomoTherapy treatment system calculates the appropriate pattern, position and intensity of the radiation beam to be delivered, to match the doctor’s prescription as closely as possible.

Patient positioning. As both a treatment delivery machine and a CT scanner, the TomoTherapy system allows doctors to take a CT scan just before each treatment. With the scan, they can verify the position of the tumor and, if necessary, adjust the patient’s position to help make sure radiation is directed right where it should be.


Precise treatment delivery. The TomoTherapy treatment system delivers radiation therapy with a spiral delivery pattern (TomoHelical^™) or discrete-angle approach (TomoDirect^™). Photon radiation is produced by a linear accelerator (or linac for short), which travels around the patient and moves in unison with a device called a multi-leaf collimator, or MLC, that shapes the beam. Meanwhile, the couch is also moving—guiding the patient slowly through the center of the ring.

What they don't tell you here is the additional step that Head/Neck folks get.  It's the mask.  The above explanation describes the process.  I am now going to fill you in on the parts that the manufacturer of the unit doesn't tell people and is what I went through.

So on Tuesday morning July 17th, I go in to the hospital for what is called Radiation Simulation.  It's the steps needed for the computer, Dr Chang, and a team of radiology techs to determine basically the targeting pattern the machine will take when applying radiation to my body. 

So I go in and they have this machine called a PET/CT.  Looks very similar to the Tomo machine in the picture above.  I lay down on the "board" with my head on a hard rest that keeps my head from moving around.  They hook up an IV with radioactive "juice" and then stick me into the machine so it can scan me.  The oral contrast (the Juice) has both Barium and some high sugar content.  Apparently, cancers like sugars, so when you send the radioactive sugars into the body, the cancers cell suck it up compared to normal cells.  The PET scan then finds these happy Sugar high Cancer cells and records 3D images of them.  This take about 25minutes.  Out I pop like toast from a toaster.

However, I'm not done.  Now the mask.  Nobody said anything about the mask process to me, just that I was going to need a mask.  And I have to where my tooth trays my dentist made up for me during this and all Tomo treatments.  They will keep the radiation from pinging off all my silver fillings I've had over the years.  That made perfect sense to me.  So up I go, put in the guards, and back down onto the table.  Steve the Simulation tech then asks if I am claustrophobic?  I tell him no with a slight air of concern in my voice.  He come back and states that some people kind of freak out on the next part but you're not claustrophobic, you should be fine.  Then he asks if I'm ready to do the mask.  I guess, how bad can this be.  He proceeds to bring over this large heated cross between plastic and fiberglass sheet and lays it on my face, total covering me from chest plate to over my head.  Completely smothering me,

I can't breath and sort of mumble something to Steve, who is quickly molding the plastic sheet around my face, that I can't breath.  "Oh, sorry" he says and quickly moves t model the plastic around my nose so that there is about an 1/16 of an inch separation from my nostrils so I can once again breath.  Steve little art project continues for about another 30 seconds, forming the plastic around my face and neck to get a nice close fit.  He then says "ok, gonna send you back into the PET again to line up your mask for the computer" and zoom, I slide back into the PET for another 20 minutes and the computer scans my mask for 3D alignment.  This time when I slide out, Steve comes over and cautiously removes my mask and states that "I'm done and can leave".  That's it.  See ya in 10 days.  Here's pics of the mask on me getting ready to do a treatment.  They actually lock the bitch down to the table I am lying on to keep my movements to almost nothing.  That way when they do a daily alignment, my position will stay consistant for all of treatment.  I can understand the claustrophobia thing.  Some patient's have to actually be sedated to do this.  I guess I'm weird, I find it facinating and my little sci-fi head makes the whole process like something out of Blade Runner or Total Recall.  

 

Here a side view showing the lock down pins












Here's the top view.  Just because there are holes where my mouth is, my mouth is closed because of the teeth guards.  Breathing is only through my nose.
Notice the green laser aligning tool splitting my forehead in half.  There are red ones on my shoulders as well.





The whole treatment process only takes 20 minutes: 1 min. to lock me down in my mask, 5 minutes to align, 1 minute to align daily with simulation targeting, 17 minutes of actual radiation.  Twice a day; once in the AM around 9am. the seconda minimum of a least 6 hrs later around 3:30/4pm, 5 days a week, weekend off.  And that's where we're at.  Chemo begins this afternoon.  It has finally begun.
(and a great tumultuous cheer rises upward at the start of Treatment,  Yeaaaaaaaaaaaaaaaaaa!!!!!!!!!

Rushing to Catch Up

So Kim tells me there are those who are reading the blog that are very frustrated with me.  Apparently, I  am not writing fast enough and have been dwelling to much time to past events.  They would like me get "caught up" so that I write about the day to day stuff.
Kids, I realize the desire to know what's going on with me. However, I feel the previous information is critical to understanding our situations and our frustrations.  The day to day stuff is not that exciting once we get there, and we will get there soon. I just think you needed a little history lesson.  Without history , how can one define a base to start?  Without a reference point, how can one choose which path is the better way to go?  Without knowledge,  how can one form poignant and critical answers or celebrate the small victories in this struggle?  Please be patient. By this posting's finish, we will be caught up to the week to week stuff and will get into the nitty gritty cancer treatment stuff.

July 4th.  We land and wonder down to baggage claim.  As we get to our carousel,  we are greeted by "Bob" holding a little sign with our names on it.  Bob's got that great Chicago accent made famous by the SNL greatest football fans and their line "Da Bears" and "Mr Mike Ditka".  Bob tells us he's our driver and will be taking us to our hotel and proceeds to grab out bags and scuttles us off to a big stretch limo.  Inside, there are a few more couples and singles all heading off to the hotel.  I thought the town the clinic was in was cose to Chicago.  Finds out, Zion, Il, is the last town on the northeast coast of Illinois.  1.5 miles farther north, and your in Wisconsin.  Ok, so much for a little site seeing on Michigan Ave.  Matter of fact, little Zion, Il is an armpit of a town.  It was dry up to 4 years ago, there are very few restaurants (Applebees is the High End cousine) and no bars to be found.  Guess its a good place to build a clinic,  being the big fish in a small town gives you a lot of clout!
July 5th.  First appointment of the day is registration.  At 7:45am, it's already 90º outside on it's way to record heat of 104º.    Maybe being inside in the air conditioning will be a good thing.
Registration is a fiasco.  It's probably the one place at CTCA that need a complete overhaul on how to handle patients.  I get a hospital wrist band with bar codes for accounting, we each get a name badge which translates into free food in the commissary, and I get a leather business travelling attache for all the paperwork and business cards I am about to receive.  We get hooked up with our "tour guide" or as CTCA call's them, the Care Team Consultant.  He drags us off to our next appoint. with my nurse navigator. This person then describes the process, in medical terms, of what the next few days will entail.  She is a nurse and knows her shit.  She then passes us off at our next stop, meeting first doctor of the day.  This gentleman oversees the testing period and records management to make sure all the pertinent information is available system wide for anyone to pull up.  We hand him the wad of testing info we have had completed in the past 3 weeks.  Big smile come to his face and claims we just lopped off 3 days of visit because we had all this info.  He then gives me a lame once over with the stethoscope
and infos us we can head off to our next appointment.  It's 10am, next appointment, 2pm.  We are sad.
So we go for a walk in the 100º temps, not very long mind you.  But it did kill 45 minutes.  We then head down to lunch room.  Very nice salad buffet filled with goodies that are all organically grown.  Hot foods and a grill, drinks and deserts.  I get a salad, you half to weigh it to pay for it, and the cashier looks at me as says "Ok, thanks"  No one told us how the food thing works so I stand there looking like an idiot and this little lady behind me says in the sweetest little voice "move it asshole, your done, it's paid for by the hospital, get out of the way!"  Thanks Grandma, I hope you choke on the tapioka!
And this is how the next 2 days goes.  It's a giant meet and greet; 2pm Meet your Radiologist, 3pm Meet your Homeopath Care Giver, 4pm Meet the Dietition.  End of day.  Next day, same thing.  9am
meet the Hemotologist, meet the G.I. guy, meet the cardiologist, lunch.  Then back with Nurse Navigation and then we're to meet with a Chaplin and a Life Quality person.  I'm all meet & greated out.  next meeting is actually medical finally.  Monday morning meet with radiologist again for an exam and figure out direction for treatment.  What?  Treatment?  They said the magic word.  TREATMENT.
OMG, Kim and I are estatic.  July 9th and we're talking treatments.  If I'd have stayed at home at Wake Forest, we'd still be in the discovery period.  Here at CTCA, boom, lets move on - treatment is needed fast!
WE like this place.
So Monday Morning we go in to see Dr Chang, my Radiologist.  He again does the obligatory stethoscope exterior listen.  He then asked if I had ever had a Endoscopy?  My wife giggled in the corner.  I said I had.  But Dr Chang says there were no information in charts, we do one now.  Yippie.
Out comes the Cadalac of Endoscopy Sex Toys.  Dr Changs toy also has a HD Camera so while he inserts the thing down through my nose and into my throat, I'm getting to see it on a big flat screen monitor hanging behind Dr Chang in full 1080P Digital quality.  Technology, ya got to love it.  And because my throat is on the big screen, I loose all track of time how long Dr Chang was rooting away.  He was also giving the tour of Jay's Throat a narrative, explaining what and where things were, all the while he's looking for that primary tumor.  It was like being on the Discovery Channel!
Finally he gets excited, or as excited as a little Korean guy can get while having a large black plastic tube shoved down my throat.  He say "look, here Tumor, on your tonsil". All looks like redish pinkish goop to me but I go along with him, he does have the Sex toy rammed down my nose.  Now see starts taking pictures like a Japanese tourist at Disneyland.  Frontals, Sides, even tried to get one from the back (that didn't go very well with the gag reflex).  Finally, he backs the Sex Toy out and says that this was good, I see him tomorrow.  And with that he leaves.  Odd little man.
Besides, now I am late for my Hemo-Oncologist appointment.  I hate that. Drives me nuts to be late, especially for a Specialist appointment.
So off to Dr Levin's office on the 3rd floor (Dr Chang is on the Ground floor.)  To say that Dr Chang is  an odd little man is a very unkind statement.  Compared to Levin, Chang is a nice quite guy.  Levin is one of those really smart people in the world that walk the line between insanity on one side and brilliance on the other.  He is truly the definition of Odd Little Man.  However, he is now in charge of my case.  Apparently, the Hemo guy is the overseer in Head and Neck Cancers at this clinic.  So I have to deal with this very bright guy and his quirky mental flow pattern.  It's tough, he has a nurse that actually fills in the blanks while he is talking.  Nurse Pam is a Saint.  Anyway, Levin finds out Chang's taken pictures and has made a decision on his radiation approach and Levin is a little tweaked he wasn't in on discovery.  He comes up with a Chemo treatment plan and radiology will just have to follow suit.
It's like watching 2 little boys in a sandbox each with there own toy.  What ever, we got a plan and we are starting when?  Levin says Chemo's to start next week Tuesday (the 17th), lab draws on Mondays.  Chang needs a week of computer simulation for the Tomo Radiation Treatments to begin on the 23rd of July.  Cool, dates and everything, a plan.  I am very happy, anxious and nervous, but happy.



  

4th of July was not supposed to be like this!

Howdy.  Hope everyone finds the new font easier to read.  I even I thought after a while I'd go blind reading the blog so Your welcome.  Right back to where we left off.
Kim and I drove home totally rejected.  We took the next couple of days to just pull it together.  We didn't think we had a lot of options and a break, even a small break, would be welcome.
It was now Sunday July 1 and we're sitting in the same turd now for the last 5 1/2 weeks.  12 Days until the scheduled biopsy with Dr Fantastic guy.  Then treatment plan, blah blah blah, we're suddenly into mid August before we officially start treatment.  What's left to do, you may ask?  We're both feeling like slitting our wrists in a love pack or just sell everything and move to Ecuador ( a much better choice)  What's should we do?!?!?!?!?!?
GIANT HOMEMADE BREAKFAST with all the fat grams you could think of.  It was a tag team debauchery.  And by the end,  we went into a fat, sugar, protein and carb stupor.  Glorious!
However Kim went there.  We promised no cancer conversations at breakfast. I looked at her and she had the look that she was tripping on a syrup overload.  She had the glossed over look of an addict and start speaking in tongues about some other private cancer center that had centers in Philly, Chicago, Denver and Phoenix. What the hell, she went there.  But my head was still fuzzy with pork sausage Tinkerbells flitting here and there.
The Cancer Centers of America.  I have never heard of them ( I have now seeing how many commercials they run across national broadcasts,  I'm sort of shocked I had never heard of them).
Kim gets on line on our Kitchen computer and pulls up this cute little website.  And right on the bottom
of the first or second page of the site, there's a link to contact a rep.  What the hell.  We're both still on a carb and protein high, click the button.  What's the worse than could happen, we get referenced to someone in an office on Monday Morning.  Click it.  Kim tells me to do it, she hates on line company reps and chat windows, Click it!!!  What the hell,  I click it.
Immediately, up pops the chat window but it was also video as well.  Great,  we both look like 2 rednecks going to a county fair.  Up pops this 40ish guy in khakis and a polo with perfect teeth, ready to sell us the farm.  Just a little too slick I'm thinking for the situation we're in.
I couldn't have been further from the truth and turns out this guy is really just a very nice guy.
We discuss our situation with him, our frustrations and he tells us about the the Center.  Finally he says
 "why don't you fly up to Chicago, we'll schedule you consultations with our Specialists.  You have most of the records and information we need already, just send it up to us on Monday.  We normally do a 5-6 day visit but in your case it could be 2-3 days.  I'll have someone from our Travel department book everything for you, can you fly on the 4th of July for a 8am consult on the 5th?
I must be still in my sugar high.  Then he says, It'll only cost you $75 for the hotel, we have a special new start rate, and your expenses for meals and getting to your local airport."
Now I know the Aunt Jemimah is behind all this.  Kim and I look at each other dumbfounded.  We could go, and not cost Kim any days off from work.  We agree, tell the guy to have travel call, and on the afternoon of the 4th of July, we're off on some wild goose chase to Chicago.
Hey, we love Chicago.  At least it will be like a sort of mini weekend vacation, maybe the last before we get back on the hellish ride on the Cancer Train.  We missed the fireworks on Lake Michigan, bummer.

I am floundering in a sea of Opinions!

This entry will be somewhat long and confusing.  It was the most frustrating part of my whole ordeal to this point.
After the weekend, I start again.  Monday morning go back to Oncologist #1 for a post consultation on the ENT's findings, and as we all have read about him, there doesn't seem to be any further information to assist us.  Da!  That comment cost me $50+$250.  However, Dr O#1 gets me squeezed in with his partner, who is the radiologist of the team, of couse into her very busy schedule. That $250 was worth something.  Drive home, Tuesday Drive back.  Get to meet Dr O#2, lets just call her "Taz".  She is 4'8" of steaming locomotive power, takes no prisoners, and even her nursing staff stay at arms length in case  Taz gets mad.  The original Tazmanian Devil ain't got nothing on this spitfire.  See comes in to the office, barely looks at my ongoing report, whips the exam door wide open and screams down the hall to her nurse to get her a trake kit (the sex toy at the ENT's office. )
Excellent, female doctor, I may get  little behind closed doors somethin somethin with her sex toy flailing about.
I got a lillte somethin' all right.  She proceeds, (unlike the ENTs high pressure hose), to numb my sinuses for insertion.  However, she's got what looks like a Chanel #5 atomizing bottle and proceeds to daintily poof up a couple of "PooFs" into my nose.  See runs away momentarily to retrieve some other implement of torture I am sure and I look at the nurse and claim "that's all the numbing stuff"?
Seems to be a bit lacking in the numbing part but high points for patient consideration.  Nursey just shrugs her shoulders as Taz reenters with full hazmat mask and apron and tells me to lean on back.
So I close my eyes and lean back into the exam chair to get a little comfortable and like a freakin rattlesnake, she on me with the sex toy.  I open my eyes and this little she devil has climb up almost into my lap and ramming that sex toy down my semi-numbed throat and nasals.  She's down in there grinding around like the Rotor Router Guy trying to find grandmas panties she accidental flushed down the John.  Finally she stops,  tells everyone in the room to look the down the scope (little tough from my point of view), and exclaims we have a possible winner!!  I do believe you have a lesion located on the back of your left tongue / left tonsil.  Tax climbs back down to floor lever quite proud of her finding.  I am actually rather excited myself,  'that means we can begin to proceedings for treatment", I ask.  No she claims, but his is a good start.  I really think you need to go off the mountain down to Wake Forest Baptist Medical Center for a better second opinion and perhaps a biopsy of whats in your throat to positively confirm the Squamous Carcinoma in your neck.
You know the sound of air exiting a balloon, that was the sound my soul made at that point.  We got the bad guy trapped, lets round him up and  hang him high at noon so the town folk can get back to life!
It was not to be.  Taz had Nurse Ratchet call down to WFB Cancer Center and get me an appointment 2 days later.  OK, two days isn't bad.  When they gonna do, look at all my test results and make conclusion for treatment and away we go.  Taz even thinks she's got a in with WFB that I could be doing my daily Radiation treatment  with her only 15 minute from my house.  Things are looking up.
She also tels me that WFB is very highly rated teaching cancer center in the east coast and that they work on a team basis.  Sort of like House, once a week these doctors and fellows and interns all meet to discuss each individual case to come up with the best treatment for the patient.  Totally makes sense, more heads are better than one in this oh so exacting science of modern cancer treatment.  I'm getting excited again that the end could be near.  My appointments in 5 days, June 20th with a Surgical Oncologist.  It's been nearly a month since the discovery of the fine needle aspiration lymph node carcinoma but awe are so close I can feel the radiation beams.
WFB hospital in in Winston Salem, NC.  A good 1.5 hour drive from my house.  And of course my appointment is scheduled at 8am.  Happy Happy Joy Joy.
So we get there, big shiny new glass and brick medical complex and proceed to find the Oncology section of the hospital up on it's own floor. 25minute later.  We enter the onology holding reception area , and there are no less than 25 "stalls by no other better word" of greeters and insurance card copiers.  Take a number, when you get called, go to your stall, and become admitted to the fold.  30 minutes later, no call.  So I proceed up to one of the empty stalls to inquire what was taking so long in my case since the little sign on this person desk read,"If you haven't been served in 15 minutes, Please step forward".  I stepped forward.
I was informed that there was a scheduling foo pah with one of the doctors and that would it be alright to "bend" the schedule around a tad.  I informed my coral master that I had driven 2 hours to get here and was not please we had a little foo pah.  She told me that everything would work out and to just have a seat and a nurse will come for you to get you vitals shortly.  45 minutes later.  265 lbs Nurse Kaneesha waddles out and calls my name.  Confidence looms at the sight of over weight health care workers.  I Never got that.  You'd think doctors and nurses would be in great shape, not looking like they just slammed a box of Krespie Kreems!   She takes me back to get my vitals, bp, weight, height and then plops me off into an small exam room, very tastefully decorated out in wood grain finishes and all the newest medical gadgetry you can put into an exam room, and proceeds to tell me the doctor will be in shortly.
There's also and brand spankin new tracyotomy sex toy waiting along one of the side walls.  Oh Goodie! I get to be scoped again for the 3rd time in 3 weeks.  I'll be able to light up my stomach next time a stick a flashlight to my nose, like a Purple Teletuby!

There's a very unsettling feeling one gets when doctors say certain things.  Life or death flashes, painful examination possibilities.  This could go on and on as far as the human psyche allows it to.
However, today.  It began as oddly as I have ever encountered a medical professional.  This gentlemen,
a freakin Oncology Surgeon, years of service and studies, trained with the best in table side manners and tact,  walks into my exam room and the first thing out of his mouth, not hello or courteous pleasantries, He claims " Mr Grindrod, you are a very interesting man,  a very interesting man indeed"!
Holly crap, what the hell does that mean?  Not even a hello, how's it going, thanks for coming to see us here at WFB.
And then proceeded to introduce his nurse, hi assistance, his fellow, and his intern.  I get it, it's a teaching hospital and I'm the floor show.
So he says he's seen my charts and graphs but still isn't convinced about the primary.  He's getting out the sex toy!!!!  Thank God his nurse filled me up with enough Novocaine powder to hold a 1 hour group session.  In he went and slid around until "voile!"  I have found it"  He proclaims,  'Look every one look" There it is"  "Please grab the scope and look for your self."  So everybody in the room, the nurse, the fellow, the intern, hell I thought the wife was going to jump into the Malay of zealous discovery.
"So now do we now know or have the primary", I ask?  No, claims the Oncologist #3.  We'll need to do a biopsy of that lesion to 98% conclude that is the main cause.  We'll have to do a CT scan, another Pet scan, a head and neck CT scan and schedule surgery to knock you out while I go in to take a biopsy of your lesion. THE SAME SHIT I JUST DId 3 WEEKS EARLIER, HAD THE RESULTS IN THEIR HANDS, BUT HAD TO HAVE AN OFFICIAL ONE FROM THEIR PEOPLE.  BULLSHIT, I wanted to say.  Cool, let's do it is what came out.   Dr Fantastic then leaves with his minions and his nurse then shuffles me to his scheduling person.  All the scans we can do tomorrow if I'm available.  Sure, what's another 6 hours in a car and 8 in a hospital at this point.  Make it so, Michele the schedule maven.  "Then only bummer", I hate those words,  " Dr Fantastic is going on vacation next week over the 4th of July and won't be able to do you're biopsy until the 12th of July".  My head was nearing the point of nuclear detonation, if it went, I could take out my self and the 4 square blacks of this center with it. I be through with this but so would my wife who been a pillar.  Couldn't do that to her and Erika.
3 more weeks of waiting plus the lab work to confirm.  I made the dates.  What else could I do.
The topper of all this Teaching Hospital crap reared its ugliest head a mere 3 hours later.  The hemo oncologist chairperson to this committee was not going to be at the weekly meeting to discuss my case but had time that afternoon to meet with my wife and I to go over an attach plan for my case that she would recommend to the committee.  All right, some direction!  We go to her office when some snotty nosed "fellow" greets us to discuss my case.  Where the fuck is the chairperson?  This kid can't comfort us out of a wet paper bag,  but he's trying his best Howdy Doody attitude on us.  Between Kim and myself, we've at this point read more there is to neck and throat cancers and treatments than most of these interns have slept on as pillows in the med library.
We give him the benefit of being young dumb and full of himself and finally the Romanian Bull marches in.  She tells us that in my case there is nothing she would offer to us as far a alternative chemo or radiation treatments and that in her opinion, all processes involved with chemo and radiation would need to take place in Winston Salem at the WFB Hospital.  We asked about alternative or holistic treatment routes and she just blew us off with a "you do not know vat you are taking about"  Ivory Tower Post Education attitude that would have stripped rust of a 56 Chevy just from her glair.
Kim and I are completely distraught on her leaving.  We grabbed what was left of our self respect and
what we new existed and proceeded back up the mountain to make some very hard decisions.

Looking for Dr. Goodbar

I knew it was going to be true, that feeling of anguish and distrust.

I hate the medical field in the US and all that goes with it, from the insurance vultures to the crackpot useless MD's that have their "take the money and run" attitudes to pay for that freakin' convertible Bentley in the parking lot.  It's so rare to find anyone in the medical field worth their weight yet their opinion.

For that is what I have discovered more that anything else while searching for "my cancer",  that there are a gazillion opinions with no 2 doctors ready to stand together to make a consensus decision.
Really, not even 2 out of the almost 50 doctors, fellows, specialists, and not to mention every Tom, Dick, and Milldrid who's had personal experience with cancer because their dear Aunt Fay, bless her heart, got "the cancer" and it was a horrible ordeal for all of us, I know just what you're going through!!!!
Give me a fucking break.
Not 2 of them can agree on what's totally wrong with me.  Granted, the human body is complicated, but it's not that complicated. This Squamous Cell Carcinoma that is in my lymph grands is a very specific type of cell.  Found only in the skin and the throat from what I have been told and researched.  Cool, that sort of narrows things down a bit.  That means somewhere between my eyes and my stomach lies the culprit.  Hiding somewhere in the moist folds of my esophagus, tickling my tonsil, crouched low under my unsuspecting tongue lies the killer waiting to grow to unprecedented size and scale that after it takes my body, Gotham City will be it's next target.  AAARRRGGGGG!!!!!!!!!!!!!
Ok, so much for the melodrama.  I just saw the Batman movie last week and it's still having a terrible affect on my introspective outlook on life.
Anyway, the surgical speciallist then sends me to go see an Oncolgist (Cancer Guy #1).  He can't see me for 3 days.  Fine.  It only June 4th at this point.  We only discovered cancerous cells the week before.  It's not like I have only 3 days to live.  Waitings cool.  Gives me time to get on line and do a little research into squamous cell carcinoma.
Finally the day arrives and I go to see Cancer Guy #1.  I figure he's going to look into my month and tada, "there's the evil doer, "be gone" he'll shout, and wave some magical Oncologist amulet and we have a cure.  Ah, no.  This is only a consultation (meaning $500, check please)
You have to go see an ENT (that's Ear, Nose, and Throat guy- and an anacronism for Entertainment) and you need to go see your dentist to have teeth pulled out!   Say WHAT!
The dentist has to approve that your teeth are in good shape incase we have to do surgery or Radiation on the primary which we haven't found yet.  Pulling teeth is just a precaution.  Fuck Me.
 I make the dentist appointment and they were very good to get me in the next day, June 5.  Dentist rummages around in my mouth, tech cleans, given the "AOK" and don't need to pull teeth, your teeth are in great shape (just now very straight, but we can fix that after you get through your cancer stuff)
Guess that's when I'm lying in the coffin everyone that comes to the wake can say "my, he has the nicest straightest teeth for a dead guy"
Task 1  Oncologist Consultation, check!
Task 2 over, Dentist, check!
Next day, I get to go to the ENT.  They "squeezed" me into his schedule although when I got to his office, I was the only one in the waiting room. Hmm.
Didn't know what to expect but I figure if anybodies going to find cancer in my throat, a freakin Ear, Nose, and Throat guy would be the ticket.  Today, my wife decides to come with me so she can be part of the "discovery".  Excellent, I got a witness!
So Dr. ENT's nurse comes in and sets up a bunch a gear for a laryngoscopy.  Part of that is this long very skinny black thing that looks more like a sex toy than a medical devise.  She explains that the sex toy is actually the scope the doctor will be using to look down into my throat.  I ask, " how does the doctor keep me from gagging as it goes down my throat"?  Silly me, "he sticks this thing into one of my nostrils in my nose and goes down that way" nurse Ratchet explains.  "But don't worry, we'll numb your sinuses and throat before he does that".  And at that point this women picks up what looks like a tire pressure fill valve you see at the local Exxon, hands me a Kleenex, and states " just breath in normally, this won't bother you at all"  and proceeds to fill 'er up to about 65 psi up my nose with pressurized powdered Novocaine!  I thought she nearly blew my head off.
My wife, pillar of salt and usually quite stoic in demeanour, is practically on the floor laughing hysterically.  After about 30 seconds, she gathers herself together and says sweetly, "Honey, you got smoke coming out your ears!"  Thanks for your loving support, dear!
So another 15minutes passes by and Dr. ENT finally comes in.  Guess the 6 year old in the room next door with the emergency marble shoved up his nose took precedent over my cancer.  He comes in and grabs the sex tool, introduces himself, and proceeds to stick the sex toy in my nose and down into my throat.  The words, "this may be a touch uncomfortable", even after having my mind altered with Novocaine, has new meaning at this point.  After about 10 minutes of this dude rummaging around my nasal cavities, tonsils, and esophagus, he pulls out the sex toy and quieting sits down for a discussion.
This guy says he really didn't see anything in my throat but if he had, he would just refer me any way to
the Cancer Guys at Wake Forest Baptist Cancer Center cause"I really don't do surgeries or like to work with cancer patients"  WTF, the bastard new I was there to try to find my primary cancer spot and he"doesn't work" with cancer patients.  He said his goodbyes, Cha ching for a $50 copay and a bill to the insurance company for another $250.  Wow, fucked like a cheap whore and I paid to get corn holed.  Another shining example of my hatred for certain medical "professionals".  Go to med school, take your bars and residency, start up a comfy little practice fixing little Emma's lactose intolerance, all is good in Dr ENT's little world.  Fuck U.   Now second week in June and I still have no diagnosis of what is the central cause of my cancer and my little lymph nodes are slightly increasing in size.
Next post will come out sooner with the continuing saga of doctors and my discovery.  Sorry the last two posts were so far in coming, but as you have read to this point, the "discovery" phase of my particular ailment is/was a great mystery and many weeks passed before a plan came into affect.