First Week Down.

Its Friday.  January 31, 2014
I have always liked weekends.  No work, something fun to do, catch up on activities or do something fun with the family.  Now it has taken on a whole new meaning.  Two days off, no radiation, no Chemo therapy.  How can a weekend get any better?  It just did. 
Well, this last week was, well, this last week.  It is behind. Done. Gone. Not to be repeated.  Even though the weeks ahead will resemble this last one, I get to cross this one off and not have to repeat it.
 I heard from a lot of my friends this last week.  I heard that so many people have gone through something like this or was very close to someone who had to go through something like this.  I even heard from a friend who went through this at the age of eight (8)..  Eight...  Talk about unfair.  At eight I was in second grade.  I had a nice young teacher, Sister Peter Damian, who liked me, I think, and who thought I was the best dodge ball player in the school yard.  She was my best friend and I would have married her if she wasn't already taken by the Lord. 
At age eight, I am sure I got a couple of shots;  maybe, polio and tetanus. I am sure I screamed bloody murder.  But having to have Chemo and radiation at that age;  I can't imagine.  This friend still has the insight one gains from going through something like that. She in young, but she is mature, thoughtful. She is kind, compassionate, caring and full of life.  I do not detect anger, grief, fear or pity in her:

 A Kiowa indian brave asks the chief,  "Why are the wolves of Good and Evil fighting within me?"  The chief answers, " The Evil wolf lives on anger, distrust, evil, fear, ego, lies and deciet.  The Good Wolf lives on kindness, love, compassion, faith, goodness and wisdom."  How do I know which one will win?  The Chief said, " The wolf that will be the strongest and eventually command the other is the one that you feed."

Her note to me was so touching and strong that I am still thinking of it and what she had to go through.  Strong, strong Lady.

I got another note from an old friend, who I had lost contact with for awhile.  He sent me a link to a  blog that his wife wrote while she was under-going treatment for her cancer.  Unfortunately, she did not survive her illness.  But, you would never know it reading her blog.  Positive, thankful, strong, grateful, determined, enjoying each minute, loving those around her. living in the present, working toward the future, appreciating all of nature, all of nature's beauty. This lady was, and is, amazing.  I wish I knew her.  I remember meeting her once, maybe twice, but just in passing and never really getting to know her story at all.  What a story I missed. I felt so close to her while I read her blog. These thoughts were going through my mind.  "Yes, I feel that too.  Yes, that is important in life.  Yes, we are all one,  Yes, we need to help each other and Yes, we need to share more love.  These are important things.  Not that other crap that we all buy into at one time or another.  We are brothers and sisters.  We should help each other like brothers and sisters."
 
I have found that there are so many people out there who are good.  There are so many people out there who have had their trial of fire already and are tempered and strong, ready to stand forth to help others in need.  There are others, like me, who tried and maybe did the best they could. But now I realize my effort could be greater.  The effort needs to be daily and it needs to be for every person I meet and come across.  I realized this week  everyone suffers, everyone has burdens to carry.  Wouldn't it be much easier for everyone if we all helped where help is needed?  Which is everywhere, in one way or another.  Namaste.

Antarctica 2012,  Iceberg alley.  Best Ice Berg climb ever!!!

Its a Marathon

OK,  so the first step of a marathon is completed.  You have to start before you can finish. Right.  So now I have had round one of Chemo and one dose of radiation.  So far so good.  Getting radiation to your head and neck is pretty benign while it is happening.  Other than being held down by my mask and having lead-lined mouth guards in place, I didn't feel a thing.

I have a bit of experience with x-rays and radiation.  During surgery I will often take a radiograph to make sure my carpentry or re-bar looks good.  ( I perform Scoliosis surgery).  When the radiology tech pushes the x-ray button, the exposure is like clicking a camera.  It is a quick little bleep.  During my radiation treatment, I could hear when the radiation machine clicked on and off.  I counted the exposure time.  It was nearly 30 seconds and they did that seven times.  Now that's some radiation. The good news is that I did do better with the mask and mouth guard today.  I think I am getting the hang of that.  Thank Goodness.

 OK,  now I am going to try and post my first picture on the blog.  I had the radiation tech take a picture of me during treatment. OK, transfer the i-phone picture to the computer and then find it and then post it.  Here we go. 

Twenty minutes later I figured out how to post the picture.  I am not very tech savvy but I am getting better.  Not quite a selfy but close.  Man, I am cute.  Anyone want to dance?  Jane?
The radiation treatment took about 30 minutes or so and then I was done.

Later that day, I could start to feel my throat swell.  Maybe a little more mucus. but OK for the first day.  I need to keep thinking about the now and present.   My mind keeps wandering;  after 36 more treatments what will my throat feel like?  That's not good.  Stay in the moment.  It is OK now and that is all that matters.  It is OK now,  it is OK now.  That is a hard thing to do, to keep your mind in a good place.  This is true for all aspects of life.  So many times throughout my life,  I have wasted so much time and energy wondering and worrying about the future. About what may happen if this or that occurs when I should have been more mindful and been in the present.  I would have been a much better person, doctor, husband, father, and friend if I had spent more time in the present; focused on what was happening in front of me and not what may or may not happen in the future.   And I think the future will take care of itself in a more controlled and satisfactory manner if you spend time in the present.  You will get more accomplished, and what you do focus on will be performed at a higher level and will end up affecting the future in a much more positive way than any amount of worrying will do.  OK, my little take on mindfulness.

So, for anyone interested, my schedule it is pretty easy.  Maybe I've mentioned this already, sorry, if I have.  But it's radiation everyday for 36 more days.  I get weekends off and Chemo is weekly for the next 5 weeks.  And then, if I am lucky, I get 3 more Chemo sessions for good behavior after the radiation is over.  One step at a time.    Namaste

















 




 

GO

And so it starts.   January 27, 2014

Didn't sleep well last night.  I must have gotten some sleep, cuz I remember getting beat up by a couple of very tall high school kids at a hardware store, in my dream.  Was that wierd?  Maybe they represent the Chemo.  I'll have to ask Dawn about that one.
 Headed over to Huntsman C. Institute for my dry run in radiation.  Of course they were running behind about an hour, so I just hung out worrying about puking on myself.  "Dr. Santora, we are ready for you."  Heart-rate goes up a little.

"We are going to your vault, sir".  Humm Vault that sounds nice.  Laying on a gurney is becoming routine.  "Here are your teeth/mouth guards", in they go.  No gagging yet. "Now, your mask" on it goes, and man is it tight.  They clip it to the gurney (with my head in it) and I begin my mind meditation to try not to gag.  "Stay focused, Don't panic, Keep breathing..."  That's my Mantra.  I've used it before in stressful situations. Scuba diving, rock climbing after my rope was cut.  Things like that.  So far, so good.  About ten minutes into it, my jaw starts to twitch.  A few seconds later it is like a full on sewing machine.  Again it is like climbing when you get to a really hard spot and your legs are contracted but not going anywhere when all of a sudden WHAM, One of your legs starts jumping up and down like a wild banshee.  Well, picture this:  Face strapped down.  Jason in his Hockey Mask.  Jaw jumping out of control, and me trying to push the mouth guards out the small holes in my fine mesh mask, while my mind is thinking of a thousand things at once.  I felt very skiddish.  Finally,  the all clear signal was given, "You did great, Dr. Santora"  Oh, if they only knew, if they only knew.

So how bad can Chemo be?
Up we go to the infusion area.  Big, airy, open cubicles with a big Lazy Boy chair, a TV, and all the medical equipment needed to draw blood, start IV's and give Chemo through your veins.  Jane and I settled in front of a 20 foot picture window overlooking our beautiful Salt Lake Valley.  Today, it looked like someone had lit a giant Cigar and blew all the smoke and dirt and pollution right into the valley.  We could barely see the mountains to our west.  It made me sad, but we sat there anyway.

Ok,  If you are sitting there and wondering what you can do to help Jane and me, I just thought of something.  E-mail Gary Herbert,  Becky Lockhart and your legislature, and tell them that we need action to clear up our air.  They need to go all the way on this one, none of this nit-picky-shit.  Do what needs to be done and then do somemore.  Tell them the Lorax sent you.

Oh, but I digress.  Anyway,  everyone was nice, nice, nice.  They started an IV, (Yea, first try) took some blood and began hydrating my kidneys with a liter of saline. Then they hung another small bag of the anti nausea medicine as a precaution.   After that was done, they showed me my Chemo (OUHHH scary) about 500cc of Cispatin,  looked like water.  These are my Navy snipers.  They are going to go throughout my body and search for aberrant cells.  I've given them the go ahead to  engage and destroy.  I didn't feel anything different.  After the Navy seals had been deployed I got another liter of saline to flush my kidneys.   All during this time Jane was by my side and helped me go to the bathroon many, many times.  I have never been this hydrated in my life.  I run pretty dry as a rule.  During long days in the OR, I'll go 6-8 hours with out drinking (water that is).  That has left me with a small spasmotic bladder.  I am a believer in what Bob Hoffman say, "Never pass up a bathroom, and dont trust your farts". 

Thanks for all the positive vibes I got today.  I want to especially thank the Greenlees; Patti, you are too much.  Jennifer Sprague; thank you, thank you, thank you,  Chuck, Sara, Serpico, Nancy and the Lynches for stopping by. The Ponds for resupplying my smoothie fix and the Colemans for the cheeses and the sweets. 

Yesterday, through my meditation on-line site I'm following, I learned how to detach from a situation and look at it from different angles.  I learned to be an observer of my thoughts and actions.  I can see how this will be important in all aspects of my life now and in the future.  I will speak the truth, I will try not to gossip.  I don't take Most things personally and I am trying not to assume.  And I will try to do my best in all I do.  Ha, that may be a hard one.  After reading my blog, the next person you see give them a big hug and tell them you love them.  Smile and be happy.   Cheers   Stevie..

On your mark, Get set...

OK,  All the test are complete.  I've met all the doctor and nurses.  Monday things begin.

I met Dr. Grossman and his nurses.  Both of his nurses knew me.  One was a nurse from the old Holy Cross Hospital, and the other said I played at her wedding.  Really?  I don't remember doing that.  I think our band played and I may have been out of town for that gig. 

Dr. Grossman is a concerned, kind and empathetic man.  He said he was sorry that I had this cancer.  He then went over all the tests that I had and stated that a lot of doctors have been reviewing my case to get things right.  He said, after careful review, I had a stage III throat cancer.  Woo, hold it.  I thought I had a stage II. (Its all about stages at this point).  He went over his reasons and talked about sitting down with several radiologist to go over all the scans in order to get this right.  Bummer, OK.  It is what it is.  He also said that my tumor was positive for the Epstien Barr Virus, EBV.  Probably the cause of my tumor.  They will follow my EBV titers over time to see if they are falling during my treatment. Being stage III still has a good prognosis it just needs more intensive treatment.

We then talked about the treatment.  Because of the stage III diagnosis I would need more Chemo treatments.  I will get 6 weekly treatments of Cisplatin starting this Monday.  And then, because of my stage, I will be the recipient of another 3 treatment (if I can stand it).  Well, if I need it I guess I can stand it, hey?  The side effects are few but may be persistent.  Hearing, peripheral numbness and tingling in the hands and feet, and, of course, nausea were the side effects.  They are going to keep an eye on these during the treatment.

Oh, the hair thing is plus or minus.  Maybe it will go, maybe it will stay.  I will keep you informed on that front.  The Chemo will be every Monday.  It takes about 5 hours to complete.  They have a place called the infusion center where all the chemo takes place.  More on that when I get to experience it. 

Things feel different now,  I have a start date.  I have a schedule.  I can't stop it, no matter how bad I want to.  I now have a little bit of fear and trepidation.  I am going to have to meditate on this one.  I need a little bit more determination as I start this journey.  I feel like I am being pushed off a cliff with a rope on.  The rope is just shorter than the length of the fall.  Hopefully, the rope will stop me right before I hit the ground.  Then, if I survive the fall, they will begin pulling me back up to the top of the cliff.  Recovery.  I was melancholy.  I came home and slept for a few hours.  That's how I cope with things sometimes; I just sleep.

I am grateful for all the people caring for me.  I am grateful for the technology that we have to treat this thing.  I am grateful for the proximity to the Huntsman Cancer Institute.  I am grateful for my community of support. (Some people come down here alone for their treatment. They rent an apartment for a few months and tough this out alone)  I am grateful for Jane. I am grateful for my health.  I am grateful for my spirit. and I am grateful for life.

I feel better now.  Thank you for letting me vent. 

Last Day Work

Today was my last official day at work for awhile.  I did clinic with Mike Pond, Wade, Mary, Bridget and Angela.  It wasn't super busy but by 3 PM I was feeling pretty tired.  Went home to take a short nap.  I have a feeling I will be pretty sick of naps in a few weeks.  Or I will be hooked and need a nap daily for the rest of my life.  Ha.

My kids are the best.  They came together and got Jane a massage at a spa.  They were thinking that she was going on this journey as well, and the extra work (caring for me, not easy)  and her worry, although you would never know it, was possibly taking its toll.  So this weekend she will have a spa treatment including, but not limited to, relaxation, massage and good oils.  She was so excited.  It is better to give than receive.  Heather, Katie, Tony, Rachel and Joey have made their Mom's day, week, and life.
She loves you all so much you will never ever know. (Jane speaking - Steve is absolutely right. We have the most wonderful kids - that includes you, Rachel.)

Meet with the Chemo Doctor tomorrow.  A few more tests and a few answers should be forthcoming.
I'll give an update this weekend into how toxic the Chemo will be.  Biggest question everyone is wondering:  What do I look like bald?  I have only been shaved once.  On a river trip down the Yampa river in Colorado and Utah.  One of the last undamned rivers in the states.   Let me tell you what Jane said, "not a pretty sight, Steve, not a pretty sight."  Cheers

PS: Thanks for all the great comments and everybody's support through these times.  You have all been wonderful and I hope you know who you are.  If you have read this blog, given me a call or sent a kind thought my way, then, yes, that is you. 

Wednesday, Jan 22

Short blog today.  Not much happening.
I had a bit of a rough night last night.  It was difficult to move.  They put the G-tube right through my abdominal muscles and into my stomach.  The tube is about the size of a pencil.   I never realized how many times you activate your core abdominal muscles to move, especially in bed.  That was hard. And then, through the night, I would get a spasm either in my stomach or abdominal wall.  I couldn't tell which.  It would spasm for about 20 seconds and then I could feel it relax.  That keep me up most of the night. I couldn't get comfortable so I was twisting and turning and that hurt my gut as well.  Ah, it seems about 4 am I fell asleep til 8.  Through the day the stomach has been feeling better.  Now it is only mildly sore if I laugh or twist and turn.  I think I will be all better by tomorrow.

Popsicles.  I was given a Popsicle after my surgery yesterday and I fell in love with them.  It felt so good on my throat.  Jane went out and bought me a box.  I had several last night and as I begin my radiation treatment and my throat gets sore, I plan to suck my way through this treatment phase.  I love popcscles.  Especially,  banana.  

Tubes Up the Nose

So today it really sunk in, I will be undergoing cancer treatment soon.  I was going to have my second surgery today. This will consist of having a G-Tube/Feeding tube placed in my stomach.  Of course I had to be NPO (no food) from midnight until after the procedure.  I was not looking forward to this because I know part of the procedure involves putting a scope or tube up you nose....again.

Anyway the  surgery was scheduled for 10:30 AM.  Jane and I were hanging around the Cancer Institute so I thought we should go check in early.  Talking to the receptionist we discovered the interventional radiologist was running late and they were looking more like 11:30 AM.  So we headed home.  (Thank Heavens, we only live 3 miles away.) I laid down and Jane, bless her soul, ironed.  Anyway, back to Huntsman at 11:15 to check in.  They came right out to get me.  Jane came along. They said she could watch.  I took off my coat and laid down under an xray machine.   A radiologist and technologist came in and introduced themselves.  They made me squirt lidocaine up my nose (ich)  and said this shouldn't take long.  I was thinking, hum no IV, no consent. I even had my shirt on and I thought it strange that they would later have me take it off to place the tube in my stomach through my abdomen.

Off to work they went.  I closed my eyes and tolerated the tube best I could.  After about ten minutes with the tube in the correct place the radiologist said, Well we are all finsihed." What?  This is not what I expected.  I told him I thought I was going to have tube place into my stomach through my abdomen.  He said, "Oh that would take IV sedation and a small surgery and have to be done in interventioal radiology. "I thought this was interventional radiology," I said.  Uhmm (worried look come over his face).  "I will be right back."  After awhile, several phone calls and a check of the schedule he came back and said, "Sorry, they want you to have a different type of feeding tube."  (I know that.)  "We also checked with interventational radiology and they are booked up for the day so you will have to reschedule."  He grabbed the tube and pulled it out of my nose.  There goes nothing.

God I hate shit shoved up my nose.

After discussing the situation with Dr. Ying's nurse, Diane, she arranged for the procedure to be done down at the University of Utah Radiology later this same day.  Well at least I am NPO.  Off Jane and I went to check into the University and hopefully get my G-tube placed.  We are going to make sure from now on that everyone is on the same page with procedures.  We met the Doctor. nice guy, but I can't remember his name.  I think it was the drugs.  He explained the procedure, I signed the consent, they started an IV and I felt comfortable we were all on the right page.  This was way better.  They gave me versed and fentenyl and having shit shoved up my nose was no longer that uncomfortable.  Weird.... Now I am home.  Tube sticking out my stomach.  Still can't eat and it feels like a horse kicked me in the stomach.  I much perfer a tube under my shirt to one sticking out of my nose for 3 months. 

Well, believe it or not, I must have grown from last week.  Remember when radiology forgot to tell me to be NPO for my PET/CT scan and I got pissed?  Well, today was much better.  I laughed.  Nobody did this on purpose and it was harmless.  Except for the shit up the nose.  I realized not to take things too personal when you have no control over why it happened and it wasn't anyone close to me doing something to try and hurt me.  It is kinda like being stuck in traffic.  No one is doing this to you and or agaist you, it is just happening.  I can deal with that. I can look at it from afar the then let it go.

I think that is a good take home message for the day.  I am also grateful to Edith, Diane and all the folks at Interventional Radiology at the University for their wonderful care and working me in on short notice.  You can decide how you look and react to situations that happen every day.  Namaste

The week before the week

This week is the week of tests.  Oh yea, a little surgery, also.  Today I had a dental appointment.  Dr. Drury had to make sure I didn't have any teeth ready to fall out.  I passed with flying colors.  Teeth ready to go, check.
Tomorrow I have a couple of appointments with speech therapy and nutrition.  Then, I get to have my feeding tube placed.  Small surgery.  They want to have put it in early so that when I need it, I will have it.  I guess they don't want to put it in when I am in the middle of the treatment.  So, I got that to look forward to, Manana.
My two daughters left and went back home today.  I will miss them both.  I love them and I know they love me.  I wish everyone could have daughters like mine.

Well not much today.  More tomorrow after the feeding tube.  Cheers 

Down Time. Sunday.

So the weekend is almost over.  I have heard from so many family and friends in our community.  Life is starting to get a bit of a rhythm to it.  Slow wake up, shower, clean up, eat, walk, nap, mando and blog.  Oh yea a couple of hugs from Jane in there as well.  Lots of stuff happening this week but I will get to that later.  No,  today I just want to express all the appreciation I have in my soul for everyone that I know and even people I don't know who have sent there love to me and my family during this time.  I hope everyone has a community like mine.  Yes, I can tell it is awkward for alot of people to broach the subject of being ill and I feel how sorry they are for me.  But I am so thankful that you had the courage to call or come over and give me a hug and to tell me you were thinking of me.  I feel like I have an Army of friends and family behind me every step of the way.  And that my friends makes it ever so much easier to face.  I feel so sorry for people with very little support or who have poor or no health care.  Until I was faced with meeting this throat cancer head on, I could not imagine what is involved with the diagnosis, staging and treatment of these diseases.  I am so lucky.  I am so lucky. I am so lucky.  Please keep all our brothers and sisters in your thoughts no matter what trials they are going through.  Everyone, everyday has hurdles and problems that they are dealing with.  Try and be a conduit for good, for alleviating pain and making someone feel better.  You have no idea what a gift that is.  And, it is easy to do.  Be grateful, share your love, hug more.  I mean real hugs; squeeze them tight, tell them how much you love them and that during the day you think of them.  Tell them we are all part of one large community.  Everyone is a part and everyone is going to the same place.  Let's go there together.

Religion.  Yea, that comes up in my thoughts a little more often these days.  My take on it is this:
We are all trying to get to the Light, God, the Energy.  It is at the center of an enormous building.  And I mean enormous because a lot of people will eventually be inside the Light.  We will become one.  Around the outside of the building are many, many entrances.  Large groups of people are gathered around the entrances trying to get in.  At one entrance you must be Hindu to get in.  At another you must be Catholic.  Muslims have several entrances and it goes on and on and on.  There are vendors trying to get people to switch doors.  Promises of riches and better seats and higher levels are sold to the highest bidder.  Oh, how humans like to complicate things.  Once inside, Peace, the Light, God, Us is all that remain and it is all that is important.  So many people who have had near death experiences talk about moving toward the Light.  It is almost universal.  They all see the Light as something good and not to be feared.  One reason I like to think of religion as I do is because it makes us all the same.  American, Jewish, African, Muslim, Latino.  It does not matter.  We were all made together and we will all be together in a warm, gentle and caring place moving forward on our journey.  If I have offended anyone please forgive me.  It is not my intention.  It is my intention to become a better man.  To share more love with others and help them on their journey.  Namaste.

Darth Vader

OK, now we are getting somewhere.  Ying Hitchcock, M.D. will be my radiation oncologist.  My Darth Vader.  She is going to come up with a plan to kill my tumor.  She is going to do it by burning the shit out of the thing with radiation.  Lets go.  I just watched Lone Survivor last week and I am ready for a fight.  I am a Navy Seal.  I am brave, a warrior and I am gonna kick butt.

Jane and I met Dr. Ying at one o'clock on Friday, my 62nd birthday.  She is a tallish Chinese woman with a very think accent.  It was a bit hard to understand her but we were all ears.  She casually mentioned that the PET scan showed no mets and that the staging was T3N1M0. (We're slowly learning a whole new language.) Basically, for me it means that the tumor (T) is a little diffuse, the local lymph nodes (N) are somewhat involved and there are no mets (M). We met with Dr. Ying for about an hour.  She checked me over. We looked at a couple of scans and then she told us matter of factly the best way to treat this cancer.  It was going to be with daily radiation for 37 treatments lasting about 30 minutes a day, Monday - Friday.  She then told us how I was going to feel.  NOT GOOD.  That eventually I would not be able to swallow.  That I would need a feeding tube. That my throat would hurt and be so dry that I would think I was in the Sahara desert.  Oh Yea, the fatigue would be severe.  Ha,  I am not a Navy Seal.  Kinda scared now.   A warrior?  Not so much.

Dr Ying said I would have a face mask made.  (Really, what's that for?  I wondered.) And you will need to wear large teeth guards during the radiation so your teeth don't fall out. I've heard of hair falling out but my teeth?   I have a very, very bad gag reflex.  I have trouble holding the scuba mouth piece in my mouth without gagging when I am 50 feet underwater.  This may be my biggest fear.  Oh yea, if I gag during the radiation treatment and throw up I won't be able to move because the face mask will be holding my head fast to the table to keep me from moving.  Oh, joy.

Off to have my mask made and have another CT Scan.  I asked Dr. Ying  about all this radiation I will be getting with the scans and all the treatments.  She said, "Don't worry, you are old enough and the effects of radiation take many years to accumulate that you will probably die of something else before that comes back to get you."   Oh  Umm, is that good news?  

Two young tech's took me away to get my mask made.  I tell them about my gag reflex and they said they would use a small mouthpiece.  It was huge.  Prior to having my mask made Dr. Ying had squirted my mouth and nose with lidocaine to look down it with a scope.  This takes away the gag reflex so I was able to get the mask and mouth piece made without incident.  As I laid on the CT gurney, they fashioned the mouth piece and then heated up a sheet of 1/4 inch thick plastic mesh that they put over my head and face and trapped me like a terrorist about to be waterboarded.  No water, of course, and I could breath through the mesh.  But this was weird.  I will try to include a picture of my mask that I get to use every day for the next 7 weeks.  I laid there for 20 or 30 minutes while they let it harden and ran a CT scan so they can make sure the radiation only goes to the tumor and not too much of my surrounding tissue.  Oh yea.  I also now have three little tattoos on my chest so they can line up everything so the radiation, again, goes only to the tumor.  I met one final time with Dr. Ying.  I asked two questions.  "What are my chances of a cure? and do you have to radiate my whole throat or can you shield the left side which was clear of cancer?  She relayed that the cancer I have is very curable.  Maybe 90-95 percent.  Very good news.  She also said it is best to radiate your whole throat so we dont have as much risk with recurrence on the oppisite side which maybe as high as 70 percent.  Not so good news but I like the cure rate so I'm good.  We left after getting a bunch of labs and headed off to spend sometime with my family.  Tony, Rachel, Joey, Katie and Heather are all here to support me.  We are having a pizza party and movie night together just to hang out and feel everyone's love.  Funny how things make the important things important.  Is cancer the best thing that ever happened to me?  Stay tuned. 

More Tests

Friday January 17^th,  My birthday…and JD’s Birthday and Mrs. Obama’s Birthday

Well. A lot has happened and I have learned a lot this week.  Wednesday, I had a 2-hour MRI of my head and neck.  Sounds harmless.  If you have never had an MRI it is pretty simple.  They lay you on a thin gurney and move the gurney into the bowels of this machine about the size of a coffin.  Yea, all you “Kill Bill” fans out there, it reminded me of Uma Thurman getting buried alive in a pine box.  I remember watching the movie and feeling like I had to leave the movie theater.  I am claustrophobic.  I was able to watch the entire buried alive scene, but it was hard.  Well, anyway, MRI was much better than the sweaty, hot dark cramped coffin but the mind sure kept trying to go back there.  Lying still for 2 hours with your head in holder was doable but not fun.

Thursday, I had my last test scheduled before the tumor board meeting.  It was a PET/CT scan.  I went to work in the AM and showed up for the PET scan about one o’clock.  Someone had given me some trail mix as an early birthday present and I munched away on it on the way to my appointment.  Once again everyone was so nice as they took me into the back room. The nurse’s first question to me was, “When did you have anything to eat or drink last?”  Opps, I knew there was a problem.  I smiled and said, “Oh, about 5 minutes ago.”  A look of shock came over her face,  “ You need to be NPO, we can’t do your test today.”  Well, long story short, there must have been a breakdown in communication.  I never got the message to be NPO.  Sorry.   They said there would be an opening tomorrow at 2 PM or sometime next week .  That bummed me out since the tumor board only meets once a week and this test had to be done before tomorrow morning.  I could feel that feeling of anger sinking into my mind.  It is a terrible feeling.  It is so hard for me to control but something I have really been working on.  I couldn’t push it away; I was pissed.  I was short with the nurse.  I wanted to scream but I didn’t.  “Why didn’t someone tell me to be NPO?”  This is going to screw up everything.  (HA. As I write this I see the problem.)  Isn’t it supposed to be all about me?   But it’s not.   I can accept that now.  Anyway, everything worked out.  Jason Hunt, my doctor, arranged to have the test at 7:30 AM the next day. If all went well it would be finished in time to have the board or at least several of the doctors look things over and get a game plan together.    

I felt bad that night for the way I felt and acted towards the folks in radiology.  I thought about the situation a lot.  Things happen. I know that.  Hell, I am in the medical field.  I experience first hand human screw-ups everyday.  This was a flat out case of being selfish.  Shame on me.  It shows how far I have to go in this life to become a bodhisattva, a helper of others, a kind and considerate man.  Hey, this blog thing is working out.   It seems the more I write about this strange journey I am on, the more insight I am beginning to have.  Cool.