(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is the 9'th blog on my journey)

First - My apologies. When I pledged to writing this, my commitment was to keep it fairly current without resorting to dragging out the smallest details. It's now about been about 2 1/2 weeks, but that leads me to the newest phase of my experiences - "It's pretty well become all about me."

Chemo was completed, and a week later the 35 radiation sessions were finally finalized on November 14'th. And during this time is where my thoughts, feelings, and state of well-being were taken over by a new physicality of the healing process. This has been an intense period where I awoke and dreaded whatever and however many pains that day would bring. While my brain was telling me "Good job Jay! You finished the chemo and radiation! Healing's on the way!", my body was on a completely different page of a new and strange book. A real "page-turner", every chapter twists, turns, and contorts you emotionally and physically.

Based on our typical, built up over the years medical experiences, I expect that when we get ill or injured, we follow a prescribed treatment for a certain length of time and... we get better. Throw this conventional thought process out when dealing with cancer! I really, honestly felt the fight rage within me between my past healing experiences and this newest "treatment's done - now you are really going to experience things". Only in the last day or two have I been able to step away from this conflict and assess and recognize that all of my focus has been on me. While the searing intensity of the past few weeks makes it easy for me to readily accept this, I am now surprised at how everything "non-me" has been blocked out. It also brings back that the medical professionals did provide some warnings about the lingering chemo and radiation effects, but there is no way they could have put a factor on them because "Everyone handles it differently".

By now you have figured out that my post chemo and radiation time has not gone quite as expected. You would be correct. Everything is still on track towards healing and a cure. However, it would be difficult to quantify the levels of discomfort when compounded with the perceived angst of not healing when you think you should be. 

This most recent, negative phase has thrown everyone here a curve. Many comments during the prior treatment process were directed at how well I appeared to handle whatever was directed to me, and how strong I was in my fight against cancer. And we all therefore believed that this would continue throughout. In fact, I expected that from me. It truly was nice to hear compliments, and that motivated me in the same positive direction.

Therefore, it is important that I take pause and remember the "why's" of my treatment. This is also the time to review, respect, and thank the countless people who have said or are saying prayers in support of my full recovery. It's also important for me to put the past few weeks in perspective (and hopefully leave them there). But most importantly, I need to reestablish a positive approach in my fight against cancer. I just visited "the dark side" for a couple weeks...and I am not the better for it.

Almost everyone concurs on one point - a positive approach is the most important aspect in fighting cancer. The last phase (post chemo/radiation) pulled me away from that mindset - albeit for a short while.

Again moving forward, I have etched out the differences felt when challenging this miserable, miscreant disease from a positive perspective. One cannot put up a weak or neutral posture in this fight - cancer preys upon this.

Lessons learned... 

(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is the 8'th blog on my journey)

Week 4 brought me the very welcome news that my tumor was shrinking. The relief - immediate! And Colleen and I now had something to build on looking forward. And ... I freely admit it - I immediately did countdowns on just about everything related to the illness and cure. How many more chemo IV sessions; how many radiation treatments; how many days for this/weeks for that... How many more plastic bottles of fine, vintage Boost/Ensure to accompany my main courses of pudding or chicken broth??

But, out of nowhere - an unexpected swerve in my thinking process. The rationalization of; treatment of; and living with cancer  precludes giving a lot of thought to anything else. I recognized the need to re-indoctrinate back with family, friends, and co-workers. 

**My co-workers at Automatic Entrances of Wisconsin have been supportive to the max. They understood where it is appropriate to bring my health challenge into their conversations with customers, and the context to use it. The open, forthright approach on my part has made it easier for them to address and move past my cancer in their jobs...

**Friends now breeze past the initial awkwardness of the "first" cancer conversation. As soon as you add "The tumor is shrinking", the conversational tone lightens up and optimism dominates your talk.

**The "Kids" understand and appreciate the concrete statement - "The tumor is shrinking". Their mindsets, rightfully so, tell them "Tumor gone - Cancer gone".

**Sister, brother, mother, in-laws, cousins and more all explore the myriad of following questions generated by this phrase. And these are pleasant, welcomed conversations.

**Colleen now goes into the fully-protective mode. Her relief at the good news is self-evident, but her RN experience dictates that every rule is to followed - to the end. No cheating on menu; prescriptions are maintained; rest; every treatment appointment will be kept, etc.. And suddenly the Christmas Menu is wide-open for discussion (Does Boost come in a Turkey or ham flavor?).

...And she quietly looks to me for a small acknowledgement of what she has experienced emotionally and physically over the past few months...

Thank you - Colleen! 

Me? ...Truth is - the experts tell you chemo and radiation effects will compound as treatment times run on. And I would offer - the experts are correct on this as well. I am fortunate to have a pat answer to use in a conversation when asked  "Hey Jay - How are you feeling?"

While good "luck" seems to be avoiding me recently, it's great to be able to answer - "Better - The tumor is shrinking." 

 

Next: "The end of chemo therapy!"

 

 

 

 

(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is the 6'th blog on my journey)

"First thing we will schedule will be the mask-fitting and..."

What's this about a mask-fitting? Well, as I have recently learned, you are positioned "just-so" during radiation treatments to ensure absolute accuracy. To accomplish this, a personalized, whole-head mask is used. You, the patient, are aligned in a treatment position while the plastic is heated and than fitted.  They then bring you over to their side by whispering "This is your special mask, and it will only be used by you..." I have an exclusive, personalized mask reserved for only my use - Excellent!  Except...I looked in a mirror and now bear a striking resemblance to Hannibal Lecter. And what's with this sudden urge for fava beans? 

Treatments were scheduled by Dr.Stuart Wong - the Chemo Oncologist, and Dr. Dian Wang - The Radiation Oncologist. There would be 7 chemo treatments (a great way to start every Monday for 7 weeks), and 35 radiation sessions (daily for 7 weeks). The chemo was started a week prior and it's role in my treatment is to make the cancer cells more susceptible to the radiation.

The chemo is roughly a 2 1/2 hr. IV drip in a quiet, relaxing environment. TV, beverages, great views, and a recliner all combine to make the time pass comfortably. Radiation is a little more intimidating...

The radiation treatment area is comprised of several enclaves with different equipment in many. My specific area, LinAcc 2, has a CAT scanner and a linear accelerator at opposing ends of a rotating bed-bench. My treatment team - Jean, Brian, and Kayla, are as precise as a Swiss watch. The patient lays down carefully positioned to duplicate the identical spot on the bench every time. And than "my" mask is brought to me. The mask is placed over your head and the frame on the back of it is clamped to the bench. The Team takes time to explain the need for exactness - they are aiming the radiation pattern to sub-millimeter dimensions to avoid unnecessary damage to the adjacent tissues. And, if you smile nicely (and bring in scrumptious cookies) they will provide you with a musical background to fit your moods.

My mask and I are inserted into the CAT scanner where images are taken daily for comparison and alignment. When complete - I am rotated 180 degrees directly under/within the LinAcc unit which then delivers the radiation. This process takes about 45-50 minutes and I consider myself fortunate to be under the watchful eye of my team. Brian (a known Cubs fan!), brings a wry irony which belies his age; Jean's humanism is sincere and comforting; and Kayla's quick smile and efficient work help transform an impersonal room into a caring area of healing.

Given the "unknown" of what I was facing, I admit to having had something between trepidation and cold, wet fear starting off. After two weeks, in an error of epic proportions, I felt compelled to boastfully announce to anyone who would listen that "I'm doing better than they expected..."

How absolutely ignorant, self-serving, and premature!

The doctors and staff gently (and I think I detected ...smugly?) suggested "Don't let the first two weeks fool you..."

Trust me - I now know that they know!

 

NEXT: "Progress in the fight..."

 

 

 

(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is 5'th blog on my journey)

Finally, the shock of cancer has settled in and I am in full-battle mode. It is time to quickly absorb what the experts are telling us and move forward with "The Cure". The sooner we start with treatment, the sooner my life and my family's life can resume normalcy. The good Dr. Campbell has told me I have the aforementioned, so let's move quickly and decisively.

Except....

"I need a PET Scan and a biopsy to confirm the type and location of the cancer?" What?!  I've already accepted it's what Dr. Campbell said - now let's get going!

But that's not how it works. I really had accepted this cancer and found myself wanting to start the curative process (before the rules could change...). 

And now the wait - when the doubts inside you build: "What if the cancer has spread? What if they find it's a completely different cancer? What if this now unidentified cancer is not curable???" And yet you remain strong to your family while honestly worrying deep inside on how a change in news could impact their lives...

"Mr. Walt - Good news - the cancer is exactly what we suspected and where we thought it would be."

This perverted disease twists and turns you and your family inside out - emotionally and physically.

The best underlying message to the above was we could now proceed with a preselected combined treatment of 7 chemo and 35 radiation sessions. Education from many sources at Froedtert also became important as nutritionists, "journey coordinators", counselors and more weighed-in.

And as Colleen and I made decisions, I internally experienced what could best be called a huge burst of optimism. I was being given treatment choices which, if followed, would provide a very good cure rate - and that means we win - and the cancer loses!  

But as we were to learn shortly, cancer does not lose easily, nor does it relinquish it's tenacious grasp within your body readily.

 

NEXT: "Don't be fooled by how you feel the first two weeks..." 

 

 

 

(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is 4'th blog on my journey)

 

The open approach of communication of my cancer began. Family, close friends, business associates, and more were called personally. The goal: to properly inform without a lot of room for conjecture or misinterpretation. And almost immediately the phone started ringing... Call upon call with questions; offers of support; expressed sympathy; similar health challenges; which presidential candidate do we support?; shared pain; and "How are the kids doing?"

Embarrassment at being the center of attention during the first calls turned to bewilderment that so many people took time out from their lives to express concern over ours. And it quickly snowballed - cards, emails, letters, everything short of YouTube. And all this while - Colleen and I were at Froedtert for tests, biopsies, doctor appointments, and a treatment plan and schedule developed. And did I mention I had a real job with real co-workers and a real workload?

And yet the support rolls in.... Somewhere "Up There" they are wondering who this "Walt Guy" suddenly is because they are working OT and straining under the volumes of prayers which have been, are being, and will be said on my behalf. I checked "Up There" to send thank you's and found the prayer bookeeping a little lax. I would have to pay a small fee via PayPal to get these records...sigh....

On the personal front, I am emotionally bouyed by the sheer numbers of families who have pledged positive thoughts to our family. Early on, one could sense these uplifting messages comforted both myself and, more importantly, my family. We shared with our kids. We downloaded and printed every supportive email. We read and re-read every card.

My wife asked me not to bring this up, but a group of our closest friends even threw a Cancer (Recovery) Party - in advance! In addition, my dentist, Dr. Dennis Abere, his wife, (one of the nicest couples - in the world!) and his staff sent cards, and special mouth and dental treatments to minimize the radiation and chemo effects.

I am literally blessed by this outpouring from our friends and this Waukesha Community. My cancer is, unfortunately,affecting the family right now. The support, prayers, and kind thoughts of many have had a huge impact on us.

Who could lose with this many determined supporters (can you tell it's election season?) willing a positive outcome?

 

NEXT: "Let's get on with it...."

(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is 3'rd blog on my journey)

My three children ages 19, 21, and 23 needed to be informed that I had cancer, but they also needed to hear some balance including our plan of attack to work towards a high cure rate. As parents, we all know the universal challenge of "selective hearing" with our kids. Ask them face-to-face to do a chore, and you might get an acknowledging grunt. Whisper to your wife from 2 rooms away that you are thinking of a Mexico Vacation, and the kids will immediately yell which weeks work best for their schedule... 

Our oldest was home, and the 2 younger are away at UW LaCrosse. How awful...how emotionally gut-wrenching to have to break news like this over a phone, but to wait would have only forestalled the inevitable. We arranged a speaker-phone conversation for Monday when Kelly, our oldest, would be back from a long weekend getaway. I rehearsed, rehearsed, and dreaded the call. I really had no "spin" - it would be "just the facts", with emphasis on the probability of a cure. This mental rehearsal also became the basis for how Colleen and I would communicate this to others moving forward. The only benefit to having to wait for Monday was that I was still grappling with my personal desire to let people know while allaying their concerns. The plan became obvious - Tell the full truth. My business sense took over - People just "know" when you believe what you are telling them, and they also can tell when a "snow-job" is being attempted.

We called - I spoke  calmly - the kid's reactions were as varied as their personalities - and my heart sank. One "too" quiet and two softly crying. One angry and another in denial. And one became withdrawn from the conversation...My hopes for some meaningful discourse on the subject - gone! But was I really surprised? I'm their "Dad", and by their definition - I am to be strong, in-charge, invulnerable, and funny. Instead - they heard "Cancer...wounded and concerned". But over the next days and weeks they dealt with this taboo subject in their individualized ways. They needed to see Colleen and I were continuing normal living (OK - Add about a few dozen doctors appointments in there). ...And it was right there - they were absorbing subtle cues from us! Our positive "Let's get on with the "Cure" approach was rubbing off and paying dividends with the younger Walts. That is gratifying and the best news I could have received.

And the "These are the facts" approach to conveying the message of cancer continues with my friends, associates, family, and others. All I ask is:

"During our conversation you will hear the word Cancer - please... please also hear the words Treatment and Cure!"

 

NEXT: Unbelievable and unexpected support...

(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is 2nd blog on my journey)

 

My wife, Colleen, and I left the doctor's office very quietly - she with her thoughts, me with mine. While driving home, I worked to create a superficial conversation centered on the few "positives" I believed Dr. Campbell had given us:

"It can be cured; it would have been Stage 3 if the mass was slightly smaller; you are otherwise in good health; it will be a combo of radiation and chemo; Froedtert has an excellent team:..." were a few of the comments recalled. My wife - the nurse, was silent. It was obvious her experience in dealing with worse-case scenarios was dictating her thought processes right then. And the car went quiet as I respected her need to internally think her husband's cancer through. Switching to a classic rock station didn't seem quite appropriate about then. And I was now alone with my thoughts...

"How do I communicate this with others when I don't fully understand nor have I absorbed the news delivered an hour before? Where do I resource good internet information on this cancer? Who do I call and in what order? How do I package the message to minimize the obvious concern which will be directed to our family? How am I with cancer?....And What/when/and how does this message get conveyed to my 3 kids ages 19 - 23?"

During the next day, independent calls were made to several trusted friends with medical resources. First - Who is the preeminent doctor for this somewhat rare, 3% of the cancer population, cancer? Second - What should we additionally be asking and is Froedtert the place? Third - Does Froedtert have a machine with IMRT (Intensity modulated radiation therapy) radiation capabilities? The answers were unanimous: Get Dr. Bruce Campbell (He diagnosed the cancer!) - Froedtert is the place and we now had many questions ready for them - Froedtert has a brand new IMRT linear accelerator which maximizes radiation with pinpoint, sub-millimeter precision to minimize damage to surrounding tissue.

I had frank discourse with Colleen on my desire to aggressively take on whatever treatment options were available, and my reliance on her to understand and interpret the myriad of medical terms, phrasings, etc to come. (Somehow I didn't feel my construction-related job experiences were good prep courses for the nuances of Latin medical terminology)  The different possibilities surrounding the "What, When, and How do I tell people ranging from family to friends to business associates to casual acquaintances of this challenge?" were winnowed to being open, honest, and factual without self pity (Too late - I already have the disease) nor emotion (Let's get on, now, to a "Cure"). The sooner this moving-forward message could be personally delivered in this fashion, the better the hope to reduce concern from others (Most people have issues/challenges of their own and really don't need another cause for worry). 

And suddenly I honestly felt better! We were not being totally reactive to the news of Cancer - we were now doing something productive and positive! We were looking ahead instead of hand-wringing and indulging the "what-ifs" of the prior day. Our paths of informed decision-making and self-advocacy were being mapped out.

The disease cancer, and the treatment towards a cure for my tongue cancer might control our short-term schedule, but it was not going to rule my life!

 

NEXT: Delivering the message... and more tests

 At 1:45 PM on Friday September 5th, 2008, my future changed.

Actually, my future had been altered sometime earlier this year. I noticed a small lump on the left side of my neck. Being 55, I have gotten used to the bumps, lumps, and irregularities which accompany  the aging process. As Summer wound down, I visited my long-respected Dr. Dan Thompson for a routine physical...and a check of the now growing, disregarded bump. He ordered CT scans which showed "some mass - probably a cyst". Dr. Dan suggested Dr Bruce Campbell, a Director of Head and Neck Surgical Oncology at Froedtert Hospital.

Prior to our appointment at Froedtert, my wife Colleen - R.N., researched cysts. Working on this assumption, we were both dismayed to realize I was probably going to have a small scar just under my chin from the day surgery needed to remove the cyst. 2 days later we were at Froedtert for our quick in-and-out visit.

Dr. Campbell is the consummate professional. He was on time, thorough, and asked basic background. He did a routine mouth and throat exam, reviewed the CT screens and than brought out a laryngoscope to get a better view of my lower throat through my nose! This scope has a long "tendril-like" black hose with a bright lght and Hi-Def camera at the end. It films the journey downward (sound like a Disney reality ride?). Up the nose and down the throat it went with my wife and the good doctor watching the computer screen - I had my mouth open, eyes closed tightly, and breathed quite carefully. 

I sensed a subtle difference in the room as the tube snaked down...down...down. And then...the tube was retracted and I relaxed. Dr. Campbell suggested we watch the film while he explained what we were looking at. Way back and way down, at the base of the tongue, there was a "sore" and a golf-ball sized (1 1/4" diameter) "mass" - the obvious cyst I would have removed. My wife started weeping quietly and, to lessen the obvious tension and now believing the cyst scar would be bigger than expected, I asked Dr. Campbell to switch the computer to ch 30, ESPN for the Brewers Game...

"Mr. Walt, you have a Squamous Cell, Stage 4, Tongue Cancer..." "There is a tumor on the base of your tongue and it has spread to the adjacent cervical nodes(hence - the 1 1/4" lump)"

That room got very hot almost instantaneously, and perspiration flowed freely from my forehead. "It can be treated with radiation and chemotherapy..." My comprehension skills were dimming when I realized how Colleen had to be feeling and how much I needed to support her right then and there. She had just left a challenging healthcare meeting concerning her father to join me at Froedtert...and now her husband has "Cancer - Stage 4!"  That's more than most families should deal with in a decade, much less 2 hours apart. My "Head of the Family" instincts kicked-in and I asked about cure rates, types of and duration of treatments, could it be something-anything else?

It's amazing how one thinks in different planes during extreme moments of challenge. "How do I approach this with my kids, friends, co-workers, and business associates?" "How come I don't physically feel different with Cancer vs without?" "Why did this have to add to Colleen's concern for her Dad - and why now?" "Do I trust Dr. Campbell or do I need a second opinion?' "Now that I have Cancer, how quickly can we move forward with treatment?" These thoughts and hundreds more flew through my head while the doctor asked for additional in-depth medical history. My mind was racing..."I want to see my kids' weddings; I want to hold grandchildren; I want to be a part of my wife's life for years to come;  I don't want people worrying about me; This was not supposed to happen now; I need to be an exemplary strong patient; Why am I not afraid?; I absolutely insist on maintaining a sense of humor; I don't want to be a burden to my family; my kids and Colleen will take their cues from me..." And the doctor's questions continued...

And on that day, and I don't know or question why, there is one thought which never entered my mind - "Why me?"

It can only be rationalized as how blessed I must be to have this many people who mean so much to me... 

 

NEXT: Colleen and me - Alone... 

POLITICAL:

Are the Democratic and Republican presidential candidates collecting money, re-grouping, and catching a spirited 2'nd wind for the home stretch? (Or has everyone, including the press, lost complete interest because they all are starting to sound the same?)

When will someone explain why being "Tough on Crime?" is so vitally important in the Gableman vs Butler Supreme Court election? (And no..."just because" doesn't work for me)

Why has Waukesha Mayor Larry Nelson (a declared Democrat) suddenly become a lightning rod for Republican criticism? (Is it possible the GOP finally added up presidential primary results in Waukesha and realized Democrat votes far outnumbered the Republican faithful?)

COMMUNITY:

Waukesha School Superintendent David Schmidt is retiring. There will be a "send-off" luncheon at the Country Springs Hotel on April 10'th. Co-sponsored by the Waukesha Education Foundation and the Waukesha Chamber of Commerce, there are more groups offering plaudits than time available for speakers. A nice tribute to a man who will be missed. Call the Chamber for details @ 262-542-4249.

Retired Waukesha North Marching Band Director Jim Doepke remains active during retirement. He has announced his desire to play the National Anthem on the trumpet at all Major League Ballparks. Commissioner Bud Selig has endorsed this and we wish Jim the very best!

Kudos to the various Departments of Public Works who kept the streets clear this winter. Let's try to remember the costs connected with this year when their budgets are blown by the end of the third quarter.

We in Waukesha will all feel the loss of Senior Journal Sentinel Editor Bruce Gill who passed away at the young age of 56. He was instrumental in bringing the Waukesha Bureau the resources to showcase the goings-on in our Community. He will be remembered as a class act.

FAMILY:   

Upcoming trip to Mexico with four families holds promise of relaxation, sun, warmth, friendship, and many memories for the upcoming year. (Why do "Dirty Monkeys" and "Miami Vice" beverages only taste good in warm climates?)

Spring Fever has gripped our family. How long before the ice is gone from Okauchee Lake??

 

This is the time of year to reflect, and a time to prioritize the important things in one's life. It's also the perfect opportunity to appreciate and respect how many positive things happen around us in the Waukesha area. Things may not be perfect here, but the positives far outweigh the negatives. Stay focused on these positives in 2008 - It's a better place to expend your energies. 

On behalf of myself and my family, we wish a Merry Christmas and Happy Holiday Season to all!

The Thanksgiving Holidays have come and gone. This year's Feast was hosted by the in-laws and it held many special meanings. Our (2) UW LaCrosse kids were home as was my wife's brother from Las Vegas. The cousins and grandchildren were all in attendance. The house was alive with warm feelings, and the smells of cooking turkey, dressing, pumpkin and apple pies, and much more filled the air.

The grandkids caught-up with each other during dinner in the dinette. Stories touching on each other's lives were exchanged with several promises made to see each other during the upcoming semester break. The adults "deformalized" the formal dining room with teasing and bad humor that somehow seemed just right. The food was savored and complimented; tired and old family stories resurfaced; harmless jokes were made - usually at someone's expense; and Grandma Ginny lapsed into her comfort zone as she tried to keep order while making sure we all had too much to eat.

The contrast between Thursday's family gathering and Friday morning's retail free-for-all was striking. How did I lapse from truly appreciating the genial family Thanksgiving mood to then, just 10 hours later, becoming a rabid, maniacal Friday AM shopper willing to almost commit a felony in my pursuit of those coveted "Doorbuster Specials"?

Was it the "once in a lifetime" savings? Would I be judged better by my neighbors if I could brag about how little I paid for items not really needed? (What was really wrong with my old shop vac?) Did it feel good to "compete and triumph" over others in the melee of competitive shopping? What if "everyone else is doing it" and I wasn't a part of it?!

...And now my kids have gone back to school; the brother-in-law is on his way home; leftovers have already been sampled; and we have the tender reassurances of another round of Thanksgiving memories being added to the family archives.

It's striking how comforting those personal memories are - and how insignificant and trivial my "retail bonanza" has already become.

A lesson learned as I approach the balance of the holidays...