Cancer and Richard Bockwinkel

This Page is a chronology...most recent on top.  So...if this is your first visit, you may want to scroll to the bottom to start at the beginning.  Thank you.  RGB


September 22, 2017

Hello again...

I am prompted to update after hearing of several people in recent weeks having encountered cancer diagnoses...and thought they might like to reach out to me if they wanted to hear my story...or read this journal.

The story continues...
Funny how time flies after you beat back the cancer issues and the cat scans become less frequent as we march on to five years "clear".

Life is good.

Going from 270 pounds to 197 pounds in five months is NOT recommended but it actually helped my blood pressure drop.  My weight is up to 225 now, but I want to get down to 210.

My saliva is still marginal...but I have less mouth dryness.

My taste buds are different...not tasting some things the way they use to taste and can't enjoy spicy foods anymore.

Still don't have to shave around my neck thanks to the radiation treatments.

My hair changed color...darker around the radiated areas.  My grey mustache is now salt n pepper ;-)

Interestingly, my sense of smell became more acute...very sensitive.  That's a good thing MOST of the time!

I did have to add a Thyroid med to my regimen.

Just a few more months till the next MRI...which will include the chest because sometimes the cancer you eliminate in the throat runs...and hides.  So...we shall have a look see before the end of the year.

Be well everyone...hug your family...your friends...even strangers.  This is what makes life GOOD.

Bock

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May 27, 2016

Hello all…

Here’s the news from the Cat Scan today.

They could not find any Cats.

Actually…

1. the Scan of Neck and the precautionary scan of the chest found NO masses or issues whatsoever.
2. the scope of my neck/tongue via that awful tube they run up the nose also confirmed NO issues except the voice box swelling from the radiation.  This swelling will never go away.  There was also some congestion and blockages…but those are related to allergies prompted by HIGH pollen counts across the board; 
1. Station:  Kansas City, MO
   Children's Mercy Hospital
   Station Head(s): Jay Portnoy, MD FAAAAI
   Date of Pollen and Mold Count: 05/27/2016
   
   *********************************
   Pollen & Mold Summary
   *********************************
   Trees: High Concentration
   Weeds: High Concentration
   Grass: High Concentration
   Mold:  High Concentration
    

BP was first checked and reported as 155 : 105.  They figured that was wrong and tested with a different “cuff”.  Result:  143 :  84 (text book)

Blood labs… ALL GOOD

Thyroid…ALL GOOD

Chocolate Chocolate Chip cookies made by Erin the night before for all the nurses and doctors were received with great GLEEEEEE.

You all have a GREAT Memorial weekend…  Love Rick

January 22, 2016

Met with Dr. Kakarala, the Tumor Team leader, the surgeon for a "routine" check up on my cancer status.

Your prayers helped me with my Cancer battle.  Friday, January 22nd, the head of the Tumor Team examined me, and tapped me on the shoulder and said…"you are still clear, and you know, June will be your 2 year anniversary…that is an important date…”.

I am grateful for your support and God’s grace and will make the best of my continued time on this planet in serving others by the grace of Our Lord Jesus Christ.  

Thank you...Next "planned" update...June 2016.

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November 8, 2015

HOORAY...have graduated to the SIX MONTH interval for cancer check ups~!

After visits with the tumor team radiologist and the chemo specialist...giving some blood for tests, and taking a CT scan...ALL IS CLEAR!  Thanks to Dr. Prakash Neupane and Dr. Xinglei Shen for their terrific work in abolishing my cancer and minimizing the lasting side effects.

KU MED rocks!!!!  ;-)

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August 3, 2015...

Blood Labs and Cat Scan of Neck UPDATE.

STILL CANCER FREE!

Thanks to Dr. Neupane for his continued vigilance on my behalf...and for so many others that his "chemo" treatments have saved.

I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know Him better.  Ephesians 1:17

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March 20, 2015...

GREAT NEWS!!!  CANCER FREE!!!!

CONFIRMED AFTER SECOND C-SCAN TODAY.

THANKS TO EVERYONE FOR THEIR SUPPORT!!!!

NOW LET'S ALL ENJOY THIS FIRST DAY OF SPRING!!!!!

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January 17, 2015

From an uncle...and my reply...

Hi Uncle…

yep…it hit me last night…was up most of the night…the waiting, wondering is tough.  Erin is very helpful.  Ollie and Lindsay (his fiance’) were actually in the room when Dr. Chen said…”We need to talk about your lungs…”.

That sort of helped me keep a stiff upper lip.  But this makes the SECOND time on this road, and although the last time went fairly well most of the time, I really hoped it was done.

Thanks for the prayers…

The weird thing is…I feel fine, my energy levels are fine.  That was how it was last year…then the treatments started and they sucked a LOT of life out of me…making me very weak for quite some time…could barely walk DOWN steps and dreaded the thought of stairs.  The treatments really drain me physically and that is NOT something I am eager to greet again…but…I will.

Richard Bockwinkel

On Jan 17, 2015, at 7:33 AM, George Bockwinkel wrote:

Rick,

Sorry to hear this update.

You have stayed in my daily prayers-mostly prayers of thanks for the good results.  Prayers will continue, but with a different approach.

I can not imagine the roller coaster you and Erin must be going through emotionally, now and for the past year plus. 

Uncle George

From a friend...such a boost are simple things...

Thanks for the email, Rick.

I sent your blog post to my father, who holds a PhD in epidemiology (so not a practicing physician-but still in the medical field), and he said it is really too early to tell if there is real concern.

If it is cancer, the fact that they are small is a sign they are early and more easily treatable.

Overall, it sounds like today's good news should outweigh any concerning news, but definitely keep me updated and good luck on March 20th!

I'm sure you will be fine.

-Mike

January 16, 2015


Cat Scan today...
Neck, throat and lymph nodes CLEAR!

However, three "new" suspicious spots have shown up on my lungs.  They are VERY small...but they were NOT there last July when my last chest scan was done.

The doctors said, sometimes treatments for Head/Neck/Throat Cancers chase the cancer to the lungs.  

SO....antibiotics are prescribed for ten days to be sure it is not just remnants of an infection showing up... (hmm sounds familiar...same medical course as last year...)

In two months, another Cat Scan; March 20th.  The "spots" may be from an infection...but...I have not been "noticeably" sick.

Anyway...if the spots are gone...great!

If the spots are still there, or they are larger, or there are more...then we start considering courses of action ranging from surgery, to chemo, to radiation...and possibly a mixture.  It all depends...

There was no discussion about the severity of "lung cancer" and survival rates...too soon for that "lecture".

So...here we go...

Thanks to you all for visiting this blog.  NOTE...you CAN participate/comment in this blog...it is NOT password protected.

All the best to you and yours...
Bock

Choose Life — One Day at a Time

“Every day I will bless You, and I will praise Your name forever and ever.”

(Psalm 145:2, NASB)

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August 25, 2014 UPDATE

Amazingly...nearly a MONTH since the last update...and the news is the BEST, but it came in a curious way.

I asked Erin to confirm when my PET Scan would be scheduled in September to determine when I could schedule surgery to get the feeding tube removed from my abdomen and the Port removed from my chest.  After a number of phone calls, we were informed that there would be no need for the PET Scan, and that I could schedule the surgeries because the tumor team has determined that "they got it"...NO MORE CANCER!

Praise the Lord.

Thank you all for your prayers and support.

I am still battling the side effects...no saliva, no taste buds working...and some bouts of dizziness and fatigue...but these are hardly the battle that daily radiation poisoning imposed on me for 8 weeks.

Now...it is back to work...and hopefully a long healthy and enjoyable continuation of my celebration of LIFE!

Thanks be to God.


JULY 28, 2014 UPDATE

Wow...nearly two weeks since I updated!

A lot has happened...mostly good.

Before I get started...thanks to those that have been calling asking about the update...I got busy since I am now able to actually WORK in the field again!!

Thanks to the folks that have waited patiently for me to recover and return to service.  It has been great to have you welcome me back to your facilities.

OK...

July 18th...had a full blood panel draw for both the Tumor Team Docs as well as the PCP (Primary Care Physician) AND the CardioVascular team.

On Monday, July 21st, we met with Dr. Neupane, Chemo Tumor Team Lead doctor.  He is very happy with my progress and anticipates that I should have good news when they do the PET Scan in late September.  We need to wait about 90 days from the last chemo treatment before the PET scan.

Dr. Neupane also advised that, based on my vital signs and blood panel results, that I no longer have any cardiovascular issues; hyper-tension, high cholesterol.  So...no more prescriptions for that stuff.  As a result I am not taking any prescriptions; only vitamins.

My weight loss plan, complemented by the Cancer treatment weight loss EFFECT, leaves me at 215 pounds; down 45 from the beginning of the year.  I am feeling fine and folks say I look a lot "better".  Hmm...how did they see me before????

I plan on getting down to 198 on the weight.  Haven't been there since I was 27...and pumping iron.  Pretty sure I won't be a SOLID 198...but it will be a GOOD 198.

Monday afternoon, July 21st, I did the follow up SWALLOW TEST to see if the baseline test compared to the post-cancer treatment test.  I passed with flying colors.  Erin got to see the LIVE X-rays of my swallowing; she thought it was cool.  They did strongly advise that I get to solid foods as soon as tolerable...

I told them I could eat soft foods BUT, having NO saliva to get it down unless I swigged a beverage was simply not preferable to a smoothy packed with protein.  And...since I CAN'T taste anything, there really is no motivation to swallow anything solid when a beverage suffices the task of providing nutrition.

Getting saliva flowing is being addressed by a Physical Therapist.  Basically there are about 1000 nodes that need gentle nudging (very light massaging) in specific sequences and directions on the chest, abdomen, neck and head.  I am learning to do this process myself so that I can daily urge my saliva to return!  Why?  Because with saliva, the taste buds get "called to action".  Gotta get those BUDS working!!

All in all...getting better every day.  I have less fatigue every day, but still need to do a lot of exercise to re-generate muscles that were basically not used for five months.

If you read this far...thank you.  If you have a current picture of yourself...please send it; many of you, that have prayed and wished me well, I have NEVER met!!  I would like to include you in a picture/slide-show that I am building...so I can remember you and thank you for your support and prayers.

THANKS...

One last note...something Father Quentin said at Mass yesterday that is stuck in my head like a catchy tune...

"Wisdom is when you can think like God."  

Well...doesn't THAT make ya feel small?

God Bless us all.
Bock

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JULY 16, 2014 UPDATE

Now it seems my path to maximum recovery will cover two years...which beats the alternative!!!

On the path?  First step...Physical Therapy...

First visit with Occupational Therapist today and was treated…and recovery continues.  

I need to see this therapist twice a week for at least two months to help me recover my “node” performance…which directly translates into regaining salivary function which leads to recovery of TASTE function.  

Right now 

Saliva ZERO

Taste ZERO.  

So eating has NO appeal.

Once I get back to tasting…I will feel cured!

More Updates to come...and thanks for the SUPPORT.  It is really helping me see a positive future.

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JULY 10, 2014 UPDATE

Hope you all had a great 4th of July.

First of three Tumor Team doctor meetings occurred July 9th.  Radiation Tumor team, headed by Dr. Shen, supported by Dr. Sood and RN Andrea did the following...

Cardio:  BP 120/66, Pulse 72, O2 level 97%.

Digestion:  Checked PEG.  OK.  Advised to get off it in about 2 weeks...after Swallow Test.  No big thrill...can't taste and still no saliva.  They say sometime in September my taste should start coming back...and by year end achieve 40% tops.  I was really hoping for more...but...maybe I get 100% Bacon and Beef taste buds and Zero veggie and Liver taste buds and I would be good with that!

Motor Skills:  Checked range of motion of neck.  Prescribed Physical Therapy.  

Checked my mouth for GAG reflex; nearly bit the Doctor's finger but the side-ways tongue depressor he wedged in there saved him.  So...Also getting speech therapy.

Tumor Inspections:  Big old swollen lymph node on my neck appears to be nearly resolved...no discernible or visible lump.  

Scoped the back of my mouth with the illuminated nasal scope.  Erin took a video; anybody want to watch it?  Anyway, she and the Doctors say the tumor is gone.  That is not to say the CANCER is gone; a PET Scan in September is scheduled to see about that.

The throat is healing and I am back on Fluoride trays; every night, for five minutes the rest of my life.

Next Doctor?  Dr. Neupane and his team to check progress of the chemo treatment; after a CAT scan.  They will see that my torso is still covered with a rash and many pustules...so the chemo is still working.

After that?  The top Doc...Dr. Kakarala, who diagnosed this, and put the team together.  Seeing him August 8th.

Keep the positive thoughts...for everyone.  Thanks for your continued interest and support.  I like hearing from everyone and hope that anyone that emails or calls ALWAYS gets a reply from me.  I truly apologize if I have failed at this in the past three months; BUT...I was fairly OUT of IT then.  I am coming back around now...so I won't drop the ball on anyone...

Thanks again...Bock


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JULY 1, 2014 UPDATE

On June 26th, tried to quit the meds and pain relievers in anticipation of achieving my goal of being OFF meds by my birthdate, June 27th.

Well...SURPRISE!  That was a bad move.  Pain was well-managed apparently!  So...because the pain is still "ON", I am back on pain killers.

Anyway...July 18th...CAT Scan basic check up with full panel of blood labs including, for the first time in 6 months...hypertension/cholesterol measures.

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JUNE 20, 2014 UPDATE

After all this treatment business that started with a lump on my throat in August 2013 and evolved into an intense number of tests and exams and surgeries and chemo/radiation treatments, I have had a great deal of time to reflect on the reality that the party must end someday. There will be a clear, cold morning when there isn't any "more."  No more hugs, no more special moments to celebrate together, no more phone calls just to chat.

It seems to me that one of the important things to do before that morning comes, is to let family and friends know that I care for them by finding simple ways to let you know my appreciation for you that have come to me with your thoughts, prayers, gifts and messages of support.  Thank you...and by this BLOG and my contacting you in the coming weeks...I hope to leave you such that you can always say, "He was my friend."  

This is not farewell...all is good.  I am doing better than they expected...but still have to wait a few months for the exams to determine if the cancer has been eliminated.  But...the outlook is good...

The sores in my mouth and throat are healing.  The swallow function is working...still.  The radiation burns on my neck are healing; still red but the skin is healed.  Fatigue is fading...I have never slept so much!  Next week should bring an end to the sores and burns so that the following week I can be stronger and out of the fatigue zone.

Thanks to everyone for their continued emails, Facebook notes/posts, phone calls, cards, mass dedications, gifts and prayers.  All of these things have truly kept my attitude positive.  The outreach from so many from so many places literally around the world...have been an inspiration.  

Thanks to all of you...I am nearing the end of the tunnel and about to get back to LIFE.

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June 11, 2014 UPDATE


Progress...all treatments have been delivered.  Now we suffer through two weeks of the treatment side-effects.  What are they?

Bloody mouth/throat.
Second Degree Burns on neck.
Significant pain when swallowing.

I could go on with the lessor annoyances...but these too shall pass.

Now we pray for healing and that the cancer has been eliminated.  In July we have a scan scheduled to see if these treatments have succeeded.

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June 6, 2014 UPDATE

Happy Friday everyone!  At least three events worth noting...

1.  Shannon Bockwinkel turns 22 today...in Tokyo, Japan.

2.  Wayne Long retires after 39 years of golfing...er working...next is golf...my error.

3.  Rick Bockwinkel completed the Radiation Treatment.

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June 4, 2014 UPDATE

Met with Dr. Shen, radiation savant.  He checked out my neck/lump and confirms that it is beginning to shrink.  He remarked that the skin dryness/cracking/bleeding would get worse, and that if chunks of skin the size of a quarter or so, became open sores that I would need to make an appointment to have this examined.

Dr. Shen then looked into my throat and told me that in the coming two weeks...what is bad now...is going to get a lot worse. ;-(

So...I am doing everything I can to hydrate and treat my throat and neck.

There are THREE radiation events to go, and ONE chemo event to go.  Then comes the two weeks of "the worst that it should get"...followed by recovery.

So...now's the time for those prayers friends!!!

Thanks to Erin for her continued vigilance with regard to my care, and to many friends and customers that have emailed their support and prayers.  THANKS.

Special thanks to my sister Sherry...who may be struggling with this more than ME!  Thanks Sher for your calls, face times and the care package that came today.  YES...I expect to fit into my PIRANHA Brothers jeans that I wore in Seattle 30 years ago!  And...the Aladdin G24 Boudoir Lamp (pictured) from your private collection arrived today...it is beautiful.



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June 1, 2014 UPDATE

OK...one week to go.  Six more Radiation treatments.  2 more Chemo treatments.

Taking painkillers every day.  They seem to work...still there is some pain so Dr. Shen prescribed a pain patch that doses me for 72 hours per patch.  Link --> Fentanyl

Fentanyl, 50 - 100 times more potent than morphine, seems to be some pretty powerful stuff...I am hoping I don't feel the need.

This is a BRIEF update...simply because I don't want to dwell on this stage...except to say...Thanks to everyone who continue to call, write, send cards, emails...  You are all great comforts to me and my family.

God Bless us all.
RGB

P.S. I can't wait to be able to eat solid foods and TASTE THEM!!!!



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May 24, 2014 UPDATE

Time sure flies when you're not having fun.  Wow...ten days since the last update.  Yep...the treatments are having their effect.  Fatigue is increasing, 2nd degree burns on my neck from the radiation, sores in the mouth from complete dryness (no saliva).

The good news is I am still able to swallow, although it is painful.  So I am about to allow myself some pain meds so that I can avoid going to the feeding tube.  As it is, the only solids I am taking are meds.  All nutrition is now BOOST PLUS...six bottles per day and about 80 ounces of club soda...gotta keep hydrated...says Dr. Shen.

We are seeing Dr. Shen twice a week now, as the side-effects are starting to manifest themselves in more significant ways.  The lymph gland that first appeared last August is still fighting; not shrinking.  So, if it does not succumb to the radiation, Dr. Shen says it is a "simple surgery" to remedy.  As much as the radiation is burning my skin tissue, I hope it nails the swelling...I would like a cure without the surgery!  Who wouldn't???

Weight is now 227 and hopefully holding since I am up to six Boost Plus per day now.  At the beginning of the year I was a portly 260 and resolved to lose weight and was doing quite well.  Lost 25 pounds...then learned I had Cancer and they told me losing weight is NOT the thing to do during treatment.  Well...easy for them to say that!

Treatments basically do two things...eliminates my appetite while killing my taste buds and saliva-making capability.  Secondly the process and meds are creating constipation issues.  What a mess!

Although the good news is June 6th, the final radiation treatment, and June 10th, the final chemo treatment are ever-nearer...these are the darkest days.  The pain will increase and begin subsiding, predictably by June 24th I should be feeling better.

So...to all of you prayerful folk out there...keep it up for about one more month...

THANKS...Bock

closing with my most recent favorite email...

From: "Frank Kovacs"

Subject: Greetings Friend

Date: May 24, 2014 at 8:31:23 AM CDT

To: "'Richard Bockwinkel'"

Rick,

Hope all is well !

When you get through this we can get together and celebrate LIFE !

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May 14, 2014 update

HUMP DAY...we hope it's DUMP DAY ;-)

Yesterday marked HUMP DAY for Chemo (#4)...halfway done.

Friday marks HUMP DAY for Radiation (#18)...halfway done.  And the meetings with the RAD Doc will be twice a week now because things are starting to happen.  Just for good measure, today they threw in a CAT Scan to check the RAD progress.  I will hear about that on Friday; half way day.

Today, Wednesday, the dietician prescribed a mild laxative to launch DUMP DAY...since Saturday was the last Thumbs UP day ;-(

Yesterday was a long day...Radiation, Blood Labs, Status Review by Chemo RN, Chemo for two and one half hours...then Walgreens for a bunch more remedy meds.

All that said...feeling OK today...  You can see my radiation suntan starting to express itself.

The above picture is to make Leigh feel better ;-)

Thanks for the notes and such folks...I am praying for you too!

Bock

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May 11, 2014 update.

I have entered the no TASTE zone...

Taste buds shut down, saliva shut down, soreness starting to creep up...  BUT...this is part of the "plan".

The plan?

What to expect from radiation treatments to the neck...

The side effects of the treatment begin in week 3-4.  Here we are...  And they build up throughout the course of the treatment, persist until the end, and gradually subside after the treatment is complete.

What does that mean?

Initially the skin becomes red and irritated in the treatment field...like a sunburn (actually more like a RED burn on me).  The skin has become dry, flaky and itchy...but we have been given ointments and creams to apply; and they do work.  However they must be carefully removed prior to radiation treatment.

What else?

The saliva dried up...became thick and sticky and sort of pools in the back of the mouth...enough to make me gag. This contributes to the inability to taste foods.  BUMMER.

Short term fix?

Carbonated water breaks up this thick gunk.  I have this with me everywhere I go now.  Hooray for Pelligrino!  Actually I need the beverage to aid in swallowing.  Imagine trying to swallow anything, even a pill, without "moisture".

FUTURE?

Saliva and sense of taste will return to normal consistency and ability about three months after completing radiation.  That means...September 6th...I should be able to swallow solid food without a swig and savor a nice juicy steak!  Let's see...that's 118 days from now.

WHAT ELSE IS GOING TO HAPPEN BETWEEN NOW AND THEN?

I will develop a severe sore throat and difficulty swallowing will accompany this...making adequate intake of food and water challenging to say the least.  Heck, today I almost spit out the Eucharistic Wine as it burnt my mouth!  Don't worry...I didn't spew!

The OHNC (Oral Head and Neck Cancer) team will provide a variety of methods  to help me swallow comfortably...including numbing mouthwashes and short, or long-term pain medications.

I am seeing a large team of specialists plus the clinical study team that is quizzing me for their "project".  A clinical nutritionist has suggested a number of supplements that Erin has been putting into my coffee, shakes and soups to keep my protein levels on target.

If swallowing becomes an issue...well...we have the feeding tube.  I hope to NOT have to use it.

The sore throat pain will peak at the end of the radiation treatment (June 6th...Shannon's birthday...so I guess I will get a TASTE of the pain Erin had on that day 22 years ago...and I am not saying it will be anything like giving birth!  Probably like a 6 or 7 on the pain scale.)  

If you don't know how to rate your pain...Here is how...click this link...

How do you RATE your PAIN - Brian Regan

The sore throat pain should fade to normal on the same timeline as the return of saliva and taste...September 6, it is!

I am not going to discuss the POSSIBLE long-term complications...unless they show up...then...being the nice guy that I am...I will share ;-)  I hope that I don't have to share.

So...there you have it...Happy Mother's Day folks...and thanks again for the calls, prayers, cards and texts.

Special thanks to Bill Kartsonis for offering to sit with me during one of my chemo sessions!  


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May 8, 2014 update.

Double dose of radiation today... 7.30AM and then 2.00PM.  These days are the ones that seem to sap my energy.  We shall see...

Thanks again for the emails and calls.  Here's one I share today...

You are and will be in our daily prayers.

If you have ever even remotely thought the question relating to your current challenge in life, "why me God?" I think I know the answer.

It is so that all of those people who you have touched with your faith in your life, have an opportunity for them to return the favor and touch you with their faith. 

Uncle George

  

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May 6, 2014 update.

Week 2 of radiation and chemo is underway.  Throat is starting to get sore, but no sores yet.

Pustules starting to form on my face and neck.  Looks like I am getting a tan at this point.

Going to start sharing some of the emails I receive...here is one that made my day yesterday...

I just had a thought, if your throat will be sore you might not be able to talk as much...

Which means, & I hate to think it, more emails from Bock!!  ;)

Wishing you a quick recovery

Brian Bahr

Central States Group

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Recap of the visit by my mom and sisters April 23-27

…thanks to all of your support.  Your being here really helped especially the morning after the Cancer Fundraiser when I was a bit in the doldrums about the potential for swallowing damage.

Recapping...

WEDNESDAY…Now this will be a memorable birthday party event!  

It was my mom's 82nd Birthday...she came to visit me and attend the Cancer Support event.  Pictured are my two treatment doctors, Dr. Shen (radiology) and Dr. Neupane (chemo).

THURSDAY…And then there was the Vinster...with the choir at Kansas City's premier venue, the Helzberg Theater at Kauffman Center.

FRIDAY…FREE…FREE AT LAST!!!  The meds worked on the blockages created by the surgeries.  Yes...that would make anybody smile after five DAYS!!!

MORE FRIDAY… Shannon...in Tokyo...CUTER than she ever has been!!!

Erin…as my caregiver, is feeling the burden on her already as she cares for me, works our business (as I am still working…just from home instead of traveling), helping Vinnie get to/from school, choir and etc, and maintaining the house.  VERY TAXING for sure.  The friends and family being here REALLY help us with all this.

Saturday night we went to a Bishop Miege school fund raiser…the place where…years ago, I won this car…

All in all…I have a LOT to be happy about…especially caring family and friends and business advocates like you that are keeping up with my blog.  THANKS to you ALL!

Richard Bockwinkel is in your debt...

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UPDATE: APRIL 29, 2014, about 7:00 PM CDST

Had my second doses of chemo (2 hours) and radiation today (15 minutes).

By the way, I forgot to mention that my chemo medication is named "ERBITUX".  Ironic, since our company is named ERB, Inc ;-)  

Anyway...if ERBITUX works as hard as ERB Inc. does...we will be just fine!

In the past week I have experienced some mild side-effects from the chemo; mild rash, itching.  They say this may get worse and manifest itself as pustules (pimples).  I didn't know they were going to revert me to my teen years with this!!  Anyway, right now it is just a minor annoyance.

My feeding tube is mostly healed and not causing discomfort when I rise from a chair...etc.  I hope that all I ever do with this contraption is FLUSH IT...and NEVER need to use it for nutrition.

The Chemo today wiped me out.  Came home and fell straight to sleep for a few hours.  Woke up with a bit of a dry mouth and proceeded to hydrate.  Now the routine flushing with baking soda solution begins to keep sores from getting established in my mouth and throat.

The radiation treatment today was 15 minutes.  That is the total time going in and coming out.  That seems FAST...but I could hear the machine running longer bursts than yesterday...so the doses are increasing.  And being pinned down to the table, immobilized with the mask putting constant pressure on my "power port" (that had the PowerLoc Infusion Kit in place) was not fun!

My bloodwork came back better than ever.

My BP is at all time lows.  They are advising me to stop cardio meds.  The weight loss of nearly 20 pounds since the first of the year is the reason for this improvement.  That's my story and I am sticking to it!

The doctors do NOT want me to lose weight during this treatment.  In fact, the nutritionist is advocating 3200 calories per day to be sure I have the energy to fight the side-effects of the chemo and radiation.

Wednesday...double dose of radiation.  7.45 AM then a six hour intermission and another dose of radiation.

As tired as I was today...tomorrow, with the double dose of radiation will likely help me get a LOT of sleep!

Thanks again to everyone for their prayers, texts, facebook comments/likes, phone calls and visits.  These are the BEST treatments.   Bock.

Novena To
St. Peregrine
  Glorious wonder-worker, St. Peregrine, you answered the divine call with a ready spirit, and forsook all the comforts of a life of ease and all the empty honors of the world to dedicate yourself to God in the Order of His holy Mother. 

You labored manfully for the salvation of souls. In union with Jesus crucified, you endured painful sufferings with such patience as to deserve to be healed miraculously of an incurable cancer in your leg by a touch of His divine hand. 

Obtain for me the grace to answer every call of God and to fulfill His will in all the events of life. Enkindle in my heart a consuming zeal for the salvation of all men. 

Deliver me from the infirmities that afflict my body (especially.....).
Obtain for me also a perfect resignation to the sufferings it may please God to send me, so that, imitating our crucified Savior and His sorrowful Mother, I may merit eternal glory in heaven.

St. Peregrine, pray for me and for all who invoke your aid.
 



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UPDATE: APRIL 24, 2014, about 11:00 PM CDST

Special thanks to Kevin Cherveny, a 12 year throat cancer survivor for reaching out after being given my contact information by Lyle Burkholder.  He sent me a reality check...here's the story...

Dear Mom and Sisters...

Based on Kevin’s message (below)…If I end up like Kevin…not being able to get through the swallowing side effects…it is soooo wonderful for you to be here for the best eating memories I hope to have.  

Love

Rick

Begin forwarded message:

From: Kevin Cherveny

Subject: Re: Lyle's friend...throat cancer survivor just called.

Date: April 24, 2014 at 1:21:07 PM CDT

To: Richard Bockwinkel, Erin Bockwinkel

Cc: Lyle Burkholder

Rich and Erin,

   Value each meal like it is your last....somethings will never taste the same and some things you may never eat again....I wish I had the memory of my last great steak because I can't eat steak...I can't get the bolus small enough nor can I masticate a bite to a swallow I can handle, also I can't do spicy foods anymore...I used to love curry and mexican...now I'm a big seafood and oriental fan. Things change but change can be embraced as good!

   I would encourage a big production of eating great from now until you can't...go out for super meals!!! Make them memorable...do them with loved ones and talk about the experience of sharing meals...I'm very self-conscious now eating socially because of what my personal experience of eating now looks and feels like.   It was wonderful talking with you...take care.

Kevin

---- Richard Bockwinkel; wrote: 

Erin:

Just had a great conversation with Lyle’s friend, Kevin Cherveny.  He is a cancer survivor since 2002.

He has had some battles…and he strongly advocates that I prepare to battle the side-effect of possibly losing the ability to swallow.  He lost that for 3 1/2 years.  He has a belly plug now.  While he can eat solid food, washing it down with a fluid, most of his protein and calories still come by way of ENSURE.

He said after ten days of radiation it hit him and he could not swallow.  

So…I am heeding the warning and researching and planning to deal with the swallow side effects.

THANKS LYLE!  Kevin really helped me understand what has yet to come...

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UPDATE: APRIL 22, 2014, about 6:00 PM CDST

GREAT NEWS!

Today we started the loading DOSE of Chemo.  It went without incident or side effects!

After 7 hours of treatment, we went to Radiology to map the mask for the cancer targeting bursts that will minimize collateral damage to the throat (saliva, speech and swallowing) and jawbone/teeth.

I put together a 5:21 minute slideshow with Santana music that will give you an idea of the radiation procedure.  Thanks for all your prayers...they are working as hard as the tumor team at KUMED.

RADIATION TREATMENT MASK SLIDESHOW

Next week...Radiation begins.

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UPDATE: APRIL 21, 2014, about 11:00 AM CDST

Power PORT and PEG installed...

UPDATE: APRIL 18, 2014, about 6:00 AM CDST

GAME ON...

Randomization results are in, I will be in the Clinical Trial Arm for treatment.  We are beyond planning...we are now SCHEDULED.

April 21, Monday...  8:00 AM to 11:00 AM
Surgery to install abdominal feeding tube and chest power port; the  latter to eliminate daily IV needle insertions for hydration, blood draws and chemical treatments.

April 21, Monday...  1:30 PM to 2:00 PM
Nurse Chair...to discuss treatment preparations and educate on what to expect going forward.

April 21, Monday...  2:00 PM to 2:30 PM
Lisa Parsons, chemo discussion...what it is, what it does, what to expect.

April 22, Tuesday...  7:00 AM to 11:00 AM
Dr. Neupane begins the Chemo treatments.

April 22, Tuesday...  11:30 AM to 1:30 PM
Dr. Shen "Port Test".  Radiation Mask check to see that it fits and has the correct markers to aim the radiation at the cancer cell hotspots.  Then Dr. Shen will set up radiation schedule, which will be Monday through Friday, with two doses on Friday...for 35 treatments...i.e. about 6 to 7 weeks.

April 22, Tuesday...  1:30 PM to 2:30 PM
Carrie, the Nutritionist, says she will let Dr. Shen know that we are to meet with her directly after your “practice run”.  She says to allow for 45 minutes for the meeting with her.  She will be able to discuss nutrition, hydration, tips to keep from having to use the PEG, etc.  She is very positive in her attitude of helpfulness.  

IF the above is accurate, this means my last Radiation treatment will be the 30th of May or June 2nd.  They predict that my weakest point will be the two weeks following the last radiation treatment, but then I should start gaining my strength and be on the way to the best I can be...



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UPDATE: APRIL 14, 2014, about 6:00 AM CDST

Once again...thanks to everyone for checking in on me, and offering prayers and support!  We are now about to get the Treatments underway...

BASIC PLAN:

Chemo AND Radiation.  

Radiation is Seven weeks.  Monday through Friday, twice on Friday.

Chemo…one chemo or another chemo.  One Chemo…three times during the seven weeks; this is the NEW trial.  Another Chemo…traditional…once a week, seven weeks.

Regardless of WHICH...CHEMO Begins April 29th.

We don't know which "ARM" of the Clinical Trial yet.

The traditional drug is called Cisplatin.

The trial drug is called Cetuximab.


Regardless...I start on ONE or the OTHER on the 29th. 

The first day of Chemo is 7 hours. 

Other dates confirmed... 

April 18...One Hour...Chemo Mask FIT test. 

April 21...Three Hours...install abdominal feeding tube and Power Port... 

April 28...Two Hours...Blood Labs and Chemo/Radiation Schooling. 

April 29...CHEMO...

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UPDATE: APRIL 12, 2014, about 6:00 AM CDST

One of the things I decided to do since finding out I might lose my hair to chemo treatments, is to not get a hair cut.  Now, after reading this article, I may never cut my hair again ;-)

Click this -->  The TRUTH ABOUT LONG HAIR

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UPDATE: APRIL 10, 2014, about 3:00 AM CDST

Can't sleep...so let's update this storyline....

Yesterday was an event-filled day.  Started with reading about Kiley Burnett, who is fighting a much more serious BRAIN cancer.  She is on the prayer blog.  She posted on her Caring Bridge account that getting the Radiation Mask was like a spa treatment.  Well...that gave me a lift because that is on my schedule for today!  But first...

It started by giving some blood for the purposes of determining Magnesium levels and White Blood counts.  "Gina", the blood-draw specialist was simply amazing.  I actually NEVER felt a thing.  For those that don't know me very well...I NEVER look at needles...so the fact that Gina stuck a needle in me and I never felt it was a great way to start the days events.  But...


Then we went to the Radiologist for my MASK fitting.  We needed an I V to allow the radiologist to inject "contrast" for CT scan imaging once the mask was in place.  This is done so they could mark the mask with reference points for beaming the Radiation to the cancer.  Well...it all started with..."Do you mind if we allow this student to put in your I V?"  Long story short...when they went to inject the CONTRAST it didn't.  Had to have the I V redone.  That done...the MASK set up went great.

Now...we are behind schedule for the HEARING Test.  Results... GOOD.  Great hearing right ear...the side Erin is on all the time (unless she is driving me somewhere).  Left ear...not so good on high frequencies...but no need for a hearing aid by a long shot.

Listen while you read...and HEAR a GREAT laugh about "Hearing"...  Click this...and listen as you read on...  This is NOT a test ;-)  Brian Regan Hearing Loss


Moving on...as we were leaving the Hearing Clinic we were "found" by the folks that conduct the survey that is done as part of the Clinical Trial application for my cancer treatment.  About an hour later I finished the questionnaires and we traveled on home.

Later I went to the dentist again to pick up my Fluoride trays and prescription fluoride meds.  So...the trays begin.

My next scheduled appointment is April 18th to TEST the radiation MASK...for fit and function; will take about an hour.

In the meantime, we wait to see if I am in the Clinical trial.  If so...we wait more to find out which "ARM" I randomly draw...the traditional treatment or the NEW treatment.


The traditional treatment will involve minor surgery to install a "PORT"...where they can inject the chemo doses each week without having to do an I V.  See above!  Don't need another I V crash!

And, in closing this entry, we were encouraged to go ahead with getting a feeding tube implanted, just in case I can't keep my weight stable...etc..  Not sure when this will happen...but...once it does, it stays for a while after the treatments in case I have trouble swallowing...eating...etc...

This has been another wonderful week of inspiration offered by others.  Thanks to the folks at Hills Pet Nutrition in Topeka for their thoughts, prayers and the encouragement that the success against ovarian cancer provided.  Thanks Ray, Mike and Art.

Lord Jesus, son of the Living God, pray for me, a sinner...that all those that have taken time to reach out to others, and me as well, are showered by your immense grace.  Amen.


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UPDATE: APRIL 4, 2014, about 5:00 PM CDST

We are starting to see the END of all the testing and prepping.  The files and files are piles and piles!!!!

Today the teeth were cleaned, scraped, planed etc...by a GREAT Dentist, Robert Herwig and his hygienist, Emma.

After that we signed the consent papers to offer my participation in a clinical study.  This evaluation process will take 5 - 10 days.  If I am entered in the study, then they randomly pick my course of treatment.  So...based on this, presumably, I won't be starting any treatment till the end of the month.

Next week:
1.  I pick up my fluoride trays, 
2.  see the radiologist for the fitting of the MASK (reported earlier on this page)
3.  do another blood lab to check my white cell counts
4.  take a hearing exam to establish a baseline hearing competency

The week after that I will revisit the radiologist for a "PORT" study...basically they put on the MASK and take some "shots" to see if the fit is good...etc.

Then...once we find out what treatment program I get for the clinical study...then a schedule will be set.  At that time I will reveal more about the treatment and certain side effects...and that is when I would really appreciate your prayers.

Thanks again everyone...I really am lifted by your calls, emails, snail mails and, the great food!  Special shout out to Kevin...sorry Pam gave me those dry rub pork ribs and you got FISH for dinner ;-(

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
UPDATE: APRIL 2, 2014, about 5:00 PM CDST

OK...all of the exams, tests, pokes, pricks, scopes, scans, and consultations are done.

Based on the findings, HPV positive P16, I am a candidate for the clinical treatment program being offered at KUMED; 15 candidates are sought.  

As a participant, this means I have a 50/50 chance of getting the traditional chemo treatment or the new chemo treatment.

We submit our consent documentation later this week.

The traditional drug is called Cisplatin.

The trial drug is called Cetuximab

For a brief tutorial on these two chemos...click 

Cetuximab and Cisplatin for Chemotherapy-Refractory Squamous Cell Cancer of the Head and Neck

What's happening for sure?

I was fitted for Fluoride Trays today.  Pick up the trays April 9th.

I will be using these every day for 10 minutes for the rest of my life.

Also on April 9th, I revisit the radiologist to be "fitted" with my MASK.  This will be used to hold me in identical position for each of the 35 radiation events to ensure the radiation hits the marks.

So...the next update will confirm the treatment regimen and the schedule.

Thanks again to everyone that has called me again this week, and emailed too.  I know my mom and sisters are stressing about this because they are not near...so...please...make the next prayer you offer for them.  THANKS  RGB


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
UPDATE: March 31, 2014, about 4:00 PM CDST

Just got back from two doctor visits.

Dentist
Chemo

Dentist....
Advises I will be doing Fluoride Trays for the rest of my life to save my teeth from the radiation poisoning that my neck/throat will be enduring in the coming two months.

Not a bad deal...

Chemo...
Well...I may be a candidate for a clinical trial.  Won't know the validity of this option till I meet with Dr. Kakarala on Wednesday.

In any case...chemo has some side effects...including that I will be on a feeding tube that will be installed in my abdomen to ensure that any loss of appetite or inability to swallow will not preempt my nutrition intake.

Keeping this brief...because Wednesday is the pivotal day...when the consent for treatment will be initiated.  Until then...

Thanks to everyone for their prayers, phone calls, emails, cards, Mass Cards, gifts, home cooking from the Browns (excellent ribs and soup!!!) and referrals to folks that have actually had the same cancer that I am about to battle...Dean Rose...Michael Whipps specifically.  Please pray for them...because they too are fighting this same specific ailment.


God blesses us for the gifts we give each other...
Bock


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
UPDATE: March 24, 2014, about 2:00 PM CDST

I just got home from the Biopsy Surgery…  Don't I look great?

NOTE…Sherry sent this picture to me…from about 30 years ago when we took a seaplane ride for some Seattle aerial photography work BEFORE there were DRONE-Cameras ;-)

Back to the NEWS….

Your prayers and support have worked well.  Thank you all.  Let me ASSURE you…I truly felt your prayers.

Throat is sore…talking is painful…should be like this for a few days…

"Here’s the scoop"

• Admitted at 6AM.
• Prepped at 6.30AM.
• Due to emergency surgery event my 7.30AM surgery was pushed back to 9.30AM and we finished one hour later…just as predicted.
• Recovery took 30 minutes.  
• They asked me to rate my pain on a scale of 1 - 10.  Naturally I said “EIGHT”.  (That’s an inside story…based on this skit by Brian Regan <— click it for a GREAT laugh  
• They talked me down to a FOUR ;-).
• They gave me a popsicle to help numb the cut on my tongue.
• So far no bleeding…but it does hurt to clear my throat or cough.

So…what do we know?

BRIEFLY….

1. The cancer is about a dime-size on the base of my tongue.
2. It is definitely Squamous cell carcinoma.  It may have an HPV aspect; biopsy will determine.
3. Biopsy study will take 5-7 days.
4. The location and size of the tumor disqualifies it for micro-robotic surgery.  Therefore the course of action will begin with Radiation complemented by some chemistry; chemo.
5. Radiology is expected to call us this afternoon. And it is likely we will begin radiation therapy as soon as a week from now.  This radiation therapy will run 7 - 8 weeks.
6. Chemo chemistry will be determined by the biopsy study by the Medical Oncology team.
7. Three to Four months later I get a follow up visit with Dr. Kakarala to see how its going.

Prognosis…totally curable.

We are very happy…

Thank you for your prayers…and I offer this one for you, my prayer warriors, who have stormed heaven and allowed us all to receive His grace…

Heavenly Father, thank you for blessing us with this network of Prayer Warriors, that, by their prayers have become a beacon of strength to others by their giving of themselves for others.   Amen.

I am truly blessed by you...Thank YOU!

Rick

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
UPDATE: March 21, 2014, about 1:00 PM CDST

Biopsy Surgery Scheduled.  Here's the plan...
Arrive at KUMED March 24, 2014 at 6AM 
go to Admissions, then go to prep (put on the gown) meet with Dr. Kakarala for pre-op discussion.
7.30 AM biopsy surgery begins

8.30 AM surgery completed.
11.00 AM back home with, what they promise will be a very sore throat.

Then we wait for the Tumor Team to give us our treatment options.

Thanks for the prayers and emails and phone calls...especially Monday, March 24th!

Sincerely...Bock

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UPDATE: March 18, 2014, about 3:00 PM CST

Liz Loy, Speech Pathologist at the University of Kansas Ear Nose & Throat Clinic on Outpatient Radiology took a BASELINE measurement of my swallowing mechanics today.  This is to give them a benchmark for restoring my swallowing and speech after the biopsy surgery (still not scheduled).  If I opt for Micro-Robotic surgery as the treatment to eradicate this cancer...this baseline will be referenced then too.

The 15 minute treatment consists of imaging studies to identify swallowing disorders.

During this procedure an SLP gives the patient a few different things to eat and drink.

Each type of food or liquid has a different thickness. This helps the SLP determine if a person has an easy or hard time swallowing it.

A thin liquid (like water) is harder to swallow because it moves very fast in the mouth and splashes down the throat.

A thicker liquid (honey or puree applesauce) moves slower and allows more time for parts in the throat to react and cover the airway.

Thanks to everyone for the prayers, emails and calls.   Bock
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COMMENT:  Seven Holy Founders...my parish / grade school...History on my side...

Seven Holy Founders Parish 

As early as 1910 Servites came to Missouri. Fr. Vincent Tesselaar established a parish in Wilhelmina then, and the Order has served several missions in the Southeast part of the state, including Malden and Ironton. In 1927 Fr. Boniface Efferen was commissioned to found a parish in Affton, and Fr. Vincent Tesselaar was named first pastor when the first church , dedicated to our Seven Founders, was completed in 1928. Dozens of Servite priests and brothers have served in the parish over the last 70 years. Our parish is a very active one with 2600 families, a vibrant parish council, BVM Sodality, Knights of Columbus, Home-School Association, Athletic Association, and several other active organizations.  

The Servite Order The Servite Order was born in 1233 in Florence, Italy, when seven merchants responded to the inspiration of Mary to dedicate themselves to serving her and God's people. Abandoning their business world, they retired to Monte Senario for a life of prayer and penance. For a while they cared for the sick in a hospital, and gradually were sought out for counseling and for their example of humility and peace. Eventually all but one were ordained priests. They adopted the rule of St. Augustine, and, strengthened by their dedication to Mary as their protector, they soon admitted many men to their group. It took several decades for final acceptance by the Church, but definitive approval of the Order came in 1304. Servites gradually extended their presence through Italy, and soon throughout Europe, and are now present in all the inhabited continents of the world. Our Seven Founders are specially noted for their unity as brothers, despite the fact that they came from different political factions in a place torn by civil strife. Their oneness was emphatically expressed by their canonization to sainthood as a group in 1888 - the only time a group other than martyrs was so graced by the Church. Servites have been in the U.S. since 1853, when Fr. Antoninus Grundner arrived from Austria to work in the diocese of Philadelphia. A few other Servites followed in the next few years, but no Servite community was established until Fr. Augustine Morini came to Wisconsin with several companions from Italy. They soon settled in Chicago, where students became more numerous, and the Order flourished.  

The St. Peregrine Story A rebellious and violent young man, Peregrine 1 was once a member a street gang in his hometown of Forli, Italy. When a Servite priest (the future St. Philip Benizi) came to Forli preaching peace and reconciliation, Peregrine heckled Philip and then physically attacked him. Philip instead of striking back, forgave his attacker. Peregrine was so deeply moved by this act of forgiveness, that he eventually entered the Servite order himself. Peregrine spent the next fifty years ministering to the poor, the sick, and the homeless of Forli. He also imposed a special penance on himself- to stand whenever it was not necessary to sit. This caused open sores to develop on one leg. The sores became cancerous and a local surgeon said that the leg would have to be amputated. The night before the operation, Peregrine prayed before an image of the crucified Christ. His prayer led him into a deep trance-like sleep. He envisioned Christ reaching down from the cross and touching his cancerous leg. When Peregrine awoke the next morning, he found that his leg had been healed the cancer was gone! Peregrine lived twenty more years. He died on May 1, 1345 at the age of eighty. He was canonized in 1725.

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COMMENT:

From: Paul Walker

Subject: RE: Bockwinkel UPDATE March 13

Date: March 14, 2014 at 7:16:54 AM CDT

To: Rick Bockwinkel

Bock, sounds like a fun day.  I was there myself yesterday morning for a PET/CT scan.  Kept the tube warm for you!

Good luck and prayers for good results next week -for both of us.

Go KU (Med center only)!

Paul

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UPDATE: March 13, 2014, about 2:00 PM CST

Here’s the latest.

Thallium Stress Testing began at 8AM.  Injected some drug that faked my heart into dilating to give the effect of dilating my blood vessels.  Strange side effects but tolerable.  I liked it better than the treadmill till ya faint procedure!  And it took maybe 10 minutes for this.

Next...straight to pictures in a machine that looks like this...

22 minutes of pictures.  Then a three hour break.  Then another 15 minutes of pictures.

Word is they report the results in 5 - 7 days.  Then, if the report supports it...we wait for surgery scheduling for the biopsy out patient event.

So...we go to Life as Usual...and keep our plans to visit my mom in St. Louis over the weekend.

Thanks for the continued prayers, emails, texts and phone calls.   Praying for each of you BACK.  -----Bock

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UPDATE: March 12, 2014, about 6:00 PM CST

Here’s the latest.

• OK…went to the pre op exam today.  Pass.  BP 120/82.  EKG…OK…small anomaly but not an issue.  It is just that my heart is not perfect.  Probably got broken once or twice over all these years.
• Tomorrow at 8AM…Thallium Stress Test.  First the injection…then the first stress scan.  Then a light meal (optional —not likely—) and another scan 3 hours later.  Then…
• Doctors get sent results…
• Doctors review results…
• If all is good…
• Out Patient Biopsy Surgery will be scheduled.

That’s the latest…other than I have lost 9 pounds since Friday.  Gee…I wonder why?

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Notable: March 11, 2014, about 4:00 PM CST

a great email from my sister, Sherry  (the picture she sent is me, 1980)

To my beloved brother who always shows me what strength is all about.

Since your call on Monday I've been walking around in a daze. I feel like the very foundation of my being has been shook to the core with the thought of you having to do battle with cancer. It worries me, but you are the strongest person I know, and you will continue to show guidance to many as you put your stubborn Bockwinkel mind into curing your body.

Prayers have taken over my life, I sure hope God doesn't get upset with me since I've been somewhat delinquent - to put it mildly. I don't have much of a network but I can tell you that you have been in Cindee and my thoughts and prayers non-stop. You should know that Amy is praying for you daily, our friend Kim called her Mom in Parsons, Kansas and her father, the preacher, has all his congregation praying as well. Then we have Mark and Anna, the tenants in the Griffin house, Anna is a Mormon and they have some serious prayer groups that are praying. Then Joan, the retired military gal that helps with repairs on lamps here at the shop is a Buddhist and is doing her thing, and, her sister is very involved with the Catholic church near Atlanta, so there is another prayer group going for you there.

Today you should be receiving a box. I didn't know what else to do on Tuesday at the shop so I chose a lamp to send you. It is one of the special Aladdin lamps that we just got in. Joan quickly rewired it and by chance, I had just the right shade for it.  The lamp has a nickname, skyscraper. The strong lines of the art deco design reminded me of your strength. 

I love you Rick. x0x0x0x~sher

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UPDATE: March 11, 2014, about 4:00 PM CST

Basically…I am waiting to get scheduled for a Thallium Stress Test.  It will require a day to do the test plus generate the report.  Then a day or so for the Surgery Scheduling department to review and approve me for the biopsy surgery.  Then they say a few days to have the surgery set up.  This is an out-patient deal that takes more time to prep and get rolled into surgery than all the other things like anesthesia..recovery etc.  They say I will be sore the next day from their cutting a bit of my tongue…  They will take 4 - 5 days to review the biopsy findings with the Tumor Board; a group of cancer specialists.  They will then contact us to  give us our options.  Hopefully this can be an easy choice…  Chemo/Radiation.  If you pray…pray for that!  Thanks to you all.

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UPDATE: March 10, 2014, about 1:00 PM CST

Have yet to schedule the Thallium Stress Test.  This is required by Dr. Kakarala prior to his performing my biopsy surgery.

I like his dedication and emphasis on structure and process.  Very encouraging...as are the many calls and emails and texts that continue to come.

While you are here on this page...if you want to post a comment...scroll down.  It's easy.

Thanks to emails like Dean's, below...I am feeling much less anxious.  I will try to add your comments as I can.  OR...you can add comments if you like.
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On Mar 10, 2014, at 10:51 AM, Dean Rose wrote:

Richard,

It is a small world!!!!!! My cancer was diagnosed as Squamous Cell Carcinoma and after the biopsy they found the primary tumor was at the base of my tongue and had metastasized to the limp systems in both sides of my neck. I was diagnosed with Stage 4B cancer in October of 2001 and the treatment strategy we selected was your option #2; it was a fairly new approach at the time, but twelve years later, I’m living proof it is effective and I have had no surgery to date. It is a very aggressive form of treatment and at the time I didn't have many options for former patients to discuss their experiences with; other than one person who went with your option # 4 and he guided me away from that treatment option.

My doctors were – Ear, Nose & Throat (Richard Price), Radial Oncologist (Bradley Kauffman) and Medical Oncologist (Johnson County East Oncologists – Sukumar Ethirajan). I worked with KU Medical Center to establish my dental treatment requirements – pre and post treatment. This is critical as it took 18 months to get my dental costs covered by my medical insurance due to the type of treatment you will be receiving with all available options. In reviewing your website it appears you have a wonderful support team; but I would like to offer to be part of your team. I know how much I wish I had someone available back then that had gone through the experience, just to provide input and help me with what to expect and answer questions on a personal level and not just from a medical point of view. Again, if there is anything I can do, please do not hesitate to let me know. Good luck and please know that you are in my thoughts and prayers! 

Regards, Dean 

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following posted March 7, 2014

Richard Bockwinkel fighting Squamous cell carcinoma

I promised an update...it follows.  But first I want to thank the many MANY people who have called, emailed and texted me their support and prayers.  Each of you bring to heart my favorite movie..."It's a Wonderful Life."

Remember, George: No man is a failure who has friends. (It's a Wonderful Life, Clarence's Book Inscription.)

So...where are we today...? 

At this point, the doctor does not know for 100% sure...but it looks like we are going to be in a fight with (click this link for more info) Squamous cell carcinoma.

This particular form of cancer is QUITE CURABLE.

After two CT scans, two scopes down the nasal passage and a PET Scan, Dr. Kiran Kakarala has recommended outpatient surgery to do a biopsy of the small lump on the base of my tongue.  He wants to be 100% sure of what this is, and this test will guide treatment options.

In preparation for this surgery, this afternoon I visited several more experts; pharmacists, RN for Blood Labs and EKG, and an Anesthesiologist.  All this amounts to the Preanesthesia Testing that needs to be done before this biopsy event.  This one-hour base-of-the-tongue biopsy surgery is scheduled for March 11th; no time set yet.

Before that test, they are trying to schedule a Thallium Stress Test to be sure my cardio system is up to this minor surgery/anesthesia.  They hope to cram this test into my Monday morning, on March 10th.  (Have I ever told you how much I crave Thallium Stress Tests?)

This outpatient surgery on Tuesday will provide information to Dr. Kakarala to share with his Tumor Board.  From their review they plan to define with clarity the severity of my condition so that the options that follow can be weighed.

OPTIONS:

1. Surgery/Biopsy determines it is NOT Cancer (low likelihood...But maybe with your  prayers... NOT finding Cancer is the finding!!).  However...If they do find cancer...the next three options come in to consideration...
2. Chemo/Radiation: 7 weeks.  Daily out/patient doses about an hour each visit..maybe gets it done.  If not...surgery.  OR...
3. Micro-Robotic Surgery...followed by Chemo/Radiation; requires less radiation due to the surgery removing all or most of the cancer.  Also would have surgery to remove swollen lymph glands.  OR...
4. Major Surgery...crack open my jaw and go after it...followed by Chemo/Radiation.  This would be ugly and possibly affect my ability to speak clearly...and taste a good Manhattan.  So this option is one that I hope that I am NOT forced to take.

Any of the Options 2-4 will ultimately scar my throat; and the latter two will remove part of my tongue.  So...they have another test for me to do to provide guidelines to potential therapists to help me "learn to swallow again".:  Video Fluoroscopic Swallowing Exam (VFSE).  Click that to read all about it.  This test is scheduled for March 18th.

If you read this far...I hope you had a cocktail in your hand.  It's 5 O'Clock somewhere.

Thanks for your prayers...they help.

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The history of the LUMP on my neck...

It first “appeared” in August 2013.  Noticed it shaving.  Thought it was allergies.  Saw a Walgreens Health Clinic nurse.  She prescribed ten days of antibiotics.  That seemed to take care of the drainage, itchy eyes, moisture in ears and sinuses.  But the lump that came up…like over night…was still there.  I thought it was smaller at the time.  But I may have been being optimistic or simply did not examine the size closely in the first place.

December rolled around and I visited with my GP and my Cardiologist.  Routine visit with the Cardio; no issues…but did tweak my hypertension meds.  The GP also tweaked my cardio meds AND prescribed 10 days of antibiotics.  That did nothing for the lump.  So, ten more days of antibiotics.  Nothing.  So a CT scan was arranged.  This was sent to an E.N.T.  He required a visit and told me he really couldn’t be sure what the images indicated.  He then proceeded to stick a scope through my nostril and wicked it down into my throat to look at the back end of my tongue where the apparent swelling begins.  This was inconclusive, so he then stuck a needle in my neck to take a biopsy of the lump on my neck.  A week later…”It could be cancer…but we need you to see Dr. Kakarala at KU MED and he will take a closer look.”  That brings you up to Friday, March 7th…I had a PET Scan and Chest CT scan.  Then met with Dr. Kakarala.  He said the initial results of the PET and CT were not certain.  He also threaded a scope through my nostril to look at my tongue.  He said in five days the radiologists would be able to tell us more…BUT…he recommended a throat biopsy.  This is an out patient procedure, but I will require a total anesthesia for the one-hour operation.  This is scheduled for tomorrow, IF I get a good Thallium Stress Test result today; because the anesthesiologist does not want any surprises.  So we wait to get called for this test and the set time for the operation tomorrow.  They said operation schedules are released after 2PM.

The biopsy operation will require about 5 days to review with the tumor team at KU MED.  They will define paths forward; options.  I sort of overviewed those on my email; found on the blog.  I pasted the copy below for your convenience.

Also, I have scheduled a Swallowing Exam…to see how I swallow now and to provide guidance should I need swallowing therapy after the treatments.

Thanks for your email and your prayers…it takes my mind off of the worrying…