Wednesday and the Oncologist

Wednesday was a get things done before the Oncologist and chemo starts, kind of day.  Lots of running around like picking up non-prescription anti-nausea medication and such.

I had decided to squeeze in an acupuncture appointment before the Oncologist.  It turned into an unusual visit, for which I am partially to blame.  Usually acupuncture is very relaxing and beneficial, but this time, for lack of a better term, they overcooked me.   They had most of my body wrapped in blankets, especially the upper half as well as a heat lamp over my legs,  I know the blankets were a nurturing thing, and they thought I was sleeping, but they really should have checked in every 15 - 20 minutes and not left me unattended for an hour or so. 

After about 30 minutes,  I got so hot and sweaty, that my heart rate and pulse started racing to cool my body.  Once that started, I got a little panicky.  I guess I was already in an anxious, high energy state wondering what was to unfold later that day with the oncologist.

I was trying to shrug the covers off with out letting the needles bite me.  The needles were mostly in my legs, arms and stomach.  Surely they should be coming any minute to check on me.

“Hello” I called.  “hellooo”  No answer.  

I could hear the music in the room to my right.  I couldn’t make a lot of noise with out disturbing the patient next door.

  

Oddly, the combination of the two different Chinese songs from my room and other room seemed timed, so that passages played back and forth.  A quiet passage in my room was countered by a louder passage in the other room and visa versa.  I made a mental note of that and tried to see if that would keep me calm, but the songs were in completely different styles, tempo and key.  It was getting a little crazy and making things worse.  

Any minute now, they will be in here, any minute.  Nothing!

“HELLO”  I said a little louder and waited.  Nothing.  *#@#* (insert cuss word of your choice here) I started pulling off all the extra blankets they had me covered with.  I waited a bit longer but was still uncomfortable.

“HELLO”  I couldn’t get much louder with out really yelling and freaking out the person in the next room.  I waited a bit.  *#@#**    *#@*#@ (insert double cuss word of your choice here)

It had been almost an hour and I had enough.  I started pulling out all the needles in my stomach so I could sit up.  I then pulled out the rest that I could feel.  I climbed off the table, fanned myself, got dressed and walked out.  You should have seen the look on their faces when I walked out.  Very surprised.  I told them I had been calling out for them.  

“Oh?  We did not hear you calling.”

I explained what happened and got many apologies and a request for payment. 

 

I had to race to the Oncologist office.  I met Glenda there and we flew through the forms and registration so we could make our appointment time.

As we were consulting with the Oncologist,  Glenda looked over to me and whispered that she liked him.  Good!  

We talked about the chemotherapy agents involved.  It turns out that my cancer is so rare, that this protocol is kind of off the deep end.  (Well of course it is!  Kind of the same old song and dance, right?) 

The protocol, as I understand it, are treatments on days 1 & 2, then days 5, 6, 7, 8 and 9.  Treatment will vary from 30 minutes to 6 hours. We all felt a sense of urgency and wanted to start as soon as possible.  Because of the office hours and weekend coming up, we all thought it would be best  to start Thursday, tomorrow, the very next day, if at all possible.  That way, I could have in office treatments on all but the last two days.  Since the last two days would be Christmas and the day after, I would have to have those in a hospital.  At the end of 28 days, one cycle, I would do it all over again. The oral agent I would do daily, increasing the dosage by 500 mg a week. 

The oral agent could not be found in Austin so we had to get that over nighted.  The other agents were readily available.

I also needed a Port-o-Cath or PICC line to start.  Texas Oncology got a Stat PICC line scheduled at 7 the next morning with Austin Radiology.  They scheduled chemotherapy to start at 8:30,  following the procedure.  Things were chugging right along and Glenda and I were pleased.

The PICC line is like hooking some one up for IV’s except they run a tube up through the arm to the the top of the heart.  They insert the Port-o-Cath under the clavicle, into the subclavian vein where it comes out by the heart.  The P-o-C is the better option, but more involved and takes longer to schedule.   Although expedient, I wasn’t real happy with the PICC line option. It would be temporary and I would have to get a Port-o-Cath anyway.  

We tried getting in touch with the surgeon’s office to see about how soon it would take to get a P-o-C, but it was almost 5 p.m. and we were getting answering machines.  Glenda suggested we bop on over since we were so close.  She got there before I did and walked up to the front desk.  The surgeon was standing right there at the window.  

I don’t know what kind of sweet talking she laid on him but when I got there, he took us back into an office.  Incredible, we couldn’t believe our luck and the graciousness of the doctor.  I mean, how many doctors do you know that would take an unscheduled walk in, right at closing time.  We told him that I needed a P-o-C so I could start chemo ASAP.  He said it is a 30 minute procedure and that we could get that scheduled for tomorrow, Thursday.  Wow, how awesome is that.  He walked up to the front and told his nurse to book me into OR at Seton at 1 p.m. and push everyone back half an hour.  

We said our thanks and goodbyes and quickly called and rescheduled everything from before.  We excitedly ran off to dinner discussing our good fortune. 

It Is What It Is

It Is What It Is

Is there any sense in trying to rationalize any of this?  People often ask, what is it from?  How can this be?  How can you be so healthy and have this happen?  Believe me, I have asked all those questions and more. 

You can imagine the questions and thoughts that initially went through my head.  I can think back to some possible contributing factors from my past. But, for what purpose?

Could any of the answers fully put me at ease, explain it satisfactorily or make any possible sense of all this? I have found that when I ask, why me, why something like this?  Or, what did I do to deserve this?  It is mostly coming from a place where and when I am feeling sorry for myself.  It does not put me in the high energy, optimistic place that I need to be in.

So is there a way to reason or rationalize stuff like this?  Is there value in why?  I guess for many people there is.  Possibly to gather a complete understanding and resolution of the healing process?

So let me say, I am no longer searching for reasons, causes or explanations.  

I hear by proclaim - There is no why.  It is what it is!

I thought at one time I was being punished by God for something but that is not how God works. When I first got “Healed by Cancer” by Dodie Osteen ( it contains 40 great healing scriptures), I flipped through it.  The very first page I came to talked about how it is God’s will for one to be healed.  That God does not teach you lessons by making you sick or by you suffering for him.  Jeremiah 30:17 I will restore health to you and heal you of your wounds.

I do not plan on turning this blog into a scripture quoting frenzy (not that there is anything wrong with that) but I just want to pass along some of the many things I am reading.

Another book I am reading “Genie in your Genes”, talks about studies that show if you believe in a  benevolent God, you had better health outcomes.  Those that believed God was judgmental, critical or punishing had poorer outcomes. 

So I ask you to join me in this.  IT IS WHAT IT IS!  Let’s deal with it and move forward.

(Music and art work to follow)

Love,

Brian

Friday After

I need to take you back to Friday after the Big Day.  Friday - tough day.  I could barely talk to anyone with out tearing up.  I would cry off and on, better now, but not done with it by any means.  I was pretty sore and headachy.  The drive and testing I guess.  Maybe the talk with the family or the “this is it “ moment where everything was on the table. 

My head was exploding with contradicting information.  Information overload!  I felt like someone had been smacking me upside the head.  

I tend to overanalyze everything and try to get a gut check on it if my brain can’t logically find the truth.  The amount of information/misinformation, legitimate studies, anecdotal testimonies -my gosh!  Those of you in similar situations that have sought out answers and truths understand.  

I was so confused, dizzy with information, a lyric in a song by Genesis came to mind. 

 “and I’m hovering like a fly, waiting for the windshield on the freeway”  That’s exactly how I felt. 

One would like to make informed decisions regarding ones life .  I know the camp promoting all the alternative products and protocols that will cure cancer and tell you that the traditional chemo approach will only kill you.  I have been in that camp for many years, even before I became an alternative health care practitioner.  The chemotherapy approach has never been congruent with my health paradigm.  Yet it can work and has had success.  There are as many miraculous stories involving people going through chemotherapy as with any of the natural products.  

The problem with both camps and the data they throw out is that of individuality.  Something I have had a lot of training in through my functional medicine courses and the many years of testing patients and perusing medical literature.   So tell me, how do you take a person who has a unique genetic biochemical individuality with different upbringing, environmental exposures, lifestyle, diet, mental/emotional makeup and belief systems and try to relate the data from one person to the next?  You Can’t!  You might get a bell curve lumping certain criteria together that you can point to.  That is how most data on nutrition, diet and lifestyle can be interpretated anyway anyone chooses.

I won’t even go into the problems related to assessing anecdotal and testimonial information.  

So where does that leave me as I hover on the freeway?

My decision has kind of been made for me.  I am out of time and will put my full energy and will power into chemotherapy.  I have some alternative tricks up my sleeve  before, during and after which I will share at a later date.  My first priority is to get stabilized.   My first appointment with the local oncologist is this Wednesday.

On another note, many people that communicate with me offer advice on their own or another persons case.  I know that your heart and concern is in the right place and I like to hear of the successes out there.  However, and not to offend any good intentioned well wishers, I would really rather not hear, that if I did what Aunt Mabel did, and drank a liter carrot juice (substitute product of choice) daily for a month, I would be cured.  It tends to frustrate me, not help me. Thanks for your consideration.

Is all this too harsh and direct?  As I read it over, it seems a bit abrupt.  Well I guess there will be good days and bad days.

Thanks for your time.

Love,

Brian

Grandmother Dream

I had a recurring dream of my childhood the other night.  When ever I went to spend the night with my Mom’s mother, Grandma Strong, we would kneel by the bed and recite the Lord’s Prayer and other prayers.  A common one was the 23rd Psalm of David.  

That night I probably dreamed three times that I was back in my Grandmothers extra bedroom, kneeling, reciting the 23rd psalms with her.  Of course I got the hint and finally grabbed my bible from the bookshelf and opened it up.  Interestingly, the red ribbon was placed on that exact page.  I opened it up and read it once again.  I had forgotten how powerful it is. I just had to copy it and post it for those who have not read it for as long as I have.

While writing this, I had to go stick in Dianne Reeves "Best times (Grandma's song)".  It chokes me up every time.

Psalm 23

A psalm of David.

The LORD is my shepherd, I shall not be in want.

He makes me lie down in green pastures, 
     he leads me beside quiet waters,

he restores my soul. 
     He guides me in paths of righteousness 
     for his name's sake.

Even though I walk 
     through the valley of the shadow of death, 
     I will fear no evil, 
     for you are with me; 
     your rod and your staff, 
     they comfort me.

You prepare a table before me 
     in the presence of my enemies. 
     You anoint my head with oil; 
     my cup overflows.

Surely goodness and love will follow me 
     all the days of my life, 
     and I will dwell in the house of the LORD 
     forever.

Test Findings and Discussion

Due to overwhelming demand I am going to post the test findings.  Please skip over this part if you don’t want to know the specifics.  Here it is, cut and dry with no humor on the side.

So it was determined to the best of their ability it is an adrenal cortical carcinoma.  At least  90 + percent sure.  This is a rare tumor, something like 1 in 2 million of all cancers and has a 5 year survival rate of 20 - 35%.   One of the reason’s it took so long to diagnose and the reason for a lot of the tests, is they had to rule out another form of adrenal tumor called a pheochromocytoma.  That one is a little trickier and if they messed with it, the hormone release would cause uncontrollable increase in blood pressure and I would stroke out.

This one is bad enough.  It also increases blood pressure through cortisol.  My blood pressure has increased 40 pts in the last two months.  Tests confirm that my cortisol levels have stayed elevated even when trying to suppress it.  

The mass originated fom my right adrenal and has grown into and infiltrated my liver and right kidney .  If that is not bad enough, it as also infiltrated into my Inferior vena cava and is closing off the blood supply.  This is of critical concern and one of the reasons I have so little time to try and get this shrunk down.  The liver biopsy showed that the lesion seen on the liver are metastasis from the adrenal tumor.  The chest CT also showed lesions which are typical of such a tumor.  This definitely complicates things since the cancer is now throughout my lymph system and blood.  Good news, there were no lesion seen in my brain or spine.

Chemotherapy appears to be the treatment of choice at this time.  Radiation and surgery are not options due the size, invasiveness and spread to other sights. The protocol they are using has a 50% effectiveness rate.  This is best they have,  They will use an oral agent, Mitotan,  to zap my adrenals to help shrink the adrenal mass and lower the cortisol.  Also, a combination of three IV agents, Doxorubicin, CISplatin and Etoposide.  I will let you look them up.  The side effects are unreal.

Following chemo the surgeon said that the operation will be tricky.  He would have to first go in an remove half of my liver to get to the IVC.  He would then have to resection the IVC and take out the mass there.  Then he would move on to take out my right kidney and the mass while dealing with any other blood vessels and lymph seen at that time as well.

My current state of symptoms are shortness of breath, constant foot and leg swelling, hint of the start of tingling in feet, high blood pressure, which has increased 40 points in the last two months, constant abdominal and back pain which is aggravated by activity etc.  It is hard to lift or twist without straining abdomen.  Frequent urination, headaches that come and go, the occasional night fever and not sleeping for more than a few hours at a time seem to round it all out.

Well, it is all out on the table now.  Not the best scenario by any means.

Glenda and I can't tell you enough how powerful your support is to us.  Thanks for all your love.

Glenda tells me she is going to write a few blogs so stay tuned.

Till next time,

Brian  

The Big Day

 I had to be get my blood drawn at 8:30 Thursday morning so we drove back to Houston Wednesday night.  I had a PET scan scheduled for mid day so we grabbed a late bite when we got to Houston about 10 at night.

Blood draw was quick and painless then we ran down to medical records to get copies of some reports.  I said good bye to Glenda and checked into nuclear medicine at 10:30.  I was already getting hungry.  I had to sit for about a half hour so took a seat and started reading.  

An elderly couple sat down next to me.  She was talking real loud on her cell phone, something about her son's hernia and how he couldn't do a thing.  

The gentleman, kind of leaned over real close and asked "what you in for?"  

I could hear his hearing aids squealing.  

"I'm here for a PET scan."

 He looked around and leaned closer  "no, I mean what you got?"  

I wasn't sure why he was leaning so close to me because he wasn't whispering.  I was a little a uncomfortable and looked around.  "They are not sure yet, but they think it is adrenal cancer."

"Adrenal Cancer?  Hmmm, I haven't heard that one before.  I have prostate cancer."  He continued "I had lung cancer too but that is in remission now.  You know this is the best place to come for cancer."

"Yah, that's what I hear."  I said

His hearing aids were really squealing now and he kept trying to adjust them.  "I also have bad ears."  

I finally figured out he kept leaning closer to me so he could watch my lips.

"See that guy over there sleeping in the recliner?"  He pointed across the room.  " He has prostate cancer too.   He seems to be doing pretty well."

"Oh good."  I stated

"You know, I had my hips replaced."

"Oh really?"

"Oh yah, not a bit of trouble.  I was walking the next day and just have a little scar."  "You see I'm an RV'er" ..... 

This went on for some time, I won't bore you with the details but it turns out he found out about this place in Maine that does hip replacements through the RV magazine he gets.  Nice guy, but I didn't mind when a lady near bye asked him where he was from and he scooted on over next to her.

They called me back, set me up in this recliner chair and said I could not cross my legs.

They did a finger stick for blood glucose and then they proceeded to insert the IV line.  I should have know something was up the way the lady kept smacking my thumb and wrist to get the vein to pop up.  

I asked "why are going for that small vein over my thumb when there are so many other good ones. "  

"Oh no," she said "this is a nice one"

My hand was stinging at this point.  She must have smacked it a dozen times.  It is no wonder when she stuck in the needle she hit a nerve of something.  I jumped and growled as she kept trying to work it in.  

"This isn't right, you hit something."  I moaned.   My whole hand was on fire like when you hit your funny bone real hard.  

" I don't know what you mean sir, everything looks fine.  Please relax your hand."

"I can't, it's on fire.  What ever nerve or tendon you hit won't let me."

"Mmmm, well let me see if I can fix it."

I was so mad, my energy level very high.  I hate to be rude to people, but some just don’t get it

She started prodding the area.

"That does not help!"

“Well I will have to take it out and start over if it is not ...”

"Oh no" I interupted  “If it is in now, just leave it and let the numbness pass."

She hooked a saline syringe to it and started injecting the fluid.  I grimaced, it hurt but I could handle it.  At least I could feel the fluid going up my arm.  I told her it was fine and I could feel it and taste it, but didn’t believe me.  She would inject a little, push on the site, inject a little, look at it, inject, prod, over and over.  

"It's fine."  I told her again

"Maybe i should redo it."

Oh, Man, I think she is  jerking me now.  I was starting to get pissed again.

She stepped out and brought in the supervisor.  He looked at it and asked if I could feel it going up my arm and  taste it.  I said yes and he said it would work.

She decided to push some more saline into my vein one last time to convince herself.

She came back with this big heavy metal cylinder that must have been 4 or 5 inches in diameter with a syringe sticking out of the middle of it.  

OH man, now this is some heavy duty radioactive material.  I can’t believe I got dosed with radioactive material twice in a month.  If I didn’t have cancer before.....

I thought, if only I had one of those glo sticks so I could put it under the covers and freak Glenda out that night.  

She told me to remember not to cross my legs.  She injected the syringe and followed it with more saline solution.  She finished up, pulled the IV out and told me I had to lay there for an hour with very little movement and said again not to cross my legs.

I laid there, bored out of my mind.  I couldn’t quite doze.  Some cute nurse (cutest so far) came and got me after an hour and said I needed to empty my bladder before the test.  I asked if I could cross my legs and she laughed.

Test went fine, boring, just laying on my back.  At least we were on time and I could eat before my meeting with the surgeon.

Surgeon’s Office

He greeted us very warmly. (too warmly, I wonder? hmmm...)  He answered all of our questions, went over all the reports and told us where we were at.

I have decided not to blog the specifics of what MDA has found.  I will share via e-mail, phone or in person if you promise it will not change or thoughts, behavior, energy, optimism or love toward me.  I do not want to throw out a lot of depressing negative energy and would rather have nothing but positive energy.  I really want to tackle all this with humor and optimism and it is hard enough keeping myself on track with out having to deal with another persons fears and apprehensions.  So far I have gotten nothing but incredible love and support from all you.  Thank you so very much.  It means more than I can ever say.

What I will tell you, using some of the surgeons words.  The main mass is growing and has invaded other organs.  He does not know how aggressive it is.  It is significant and advanced and life threatening.  It is not the worst he has seen but it is up there.  If he were to try to classify it, which is hard, since it is a rare tumor and a more challenging and complicated case, he would just say it is stage IV with distal metastasis.

He told us that he as seen worse cases respond.  He also thinks that my good health is a major factor and greatly improves the likelihood of a favorable outcome.

Ride Home

The news was kind of what we knew already.  I called my family on the way home and told them.  I was far more emotional talking to my brother Paul and his wife Lin than I was with my Mom.  I was very upbeat with her and minimized everything about it.  Paul and Lin said the most powerful prayers for me that I have ever heard.  I could actually feel the energy.   It was pretty amazing.

Thanks for following along.  I know many of you want to more of the specifics about how I feel and treatment decisions.   I will go over some of that on the next blog.  Those who want to know more specifics on what the test results show can e-mail me and I will call you or just e-mail back.  I always get more emotional talking specifics.  More reality I guess, but I think it is good for me.  I had a tough Friday, so this is late getting out.  

Please keep the comments coming.  I really enjoy them and get a lot out of them.  I appreciate your time.

Love,

Brian

Snow

SNOW!!!  Can you believe it snowed?  We did not actually see the event but we woke up to it.  How wonderful to see again.  Ahhh - the simple little things can bring such joy.

I have more pictures of the snow and the leaves changing color under "Seasons "on our home website.  If you don't have the website, it is "hillsofdreams.com" and the password is "ladybug".  We will post events, pictures, studio schedules and such on there.  The halloween pictures are on there as well.  This is a password protected site so only friends and family can get into it.  Please do not give the password out.  I will probably change the password periodically.  If you do not want your picture posted for your friends to see, let me know and I will remove it.  Please do not use pictures with out permission. 

Thanks for all the love and support - B