Wake Up! Waukesha

(Note: On September 5th, 2008, I was diagnosed with Squamous Cell Tongue Cancer - Stage 4. Following is the 7'th blog on my journey)

READER - NOTE OF CAUTION: Do not stop reading this blog part way !

Week 3 in the treatment of cancer, and I sense things are different... Maybe it's my saliva glands shutting down and my new need for a "best friend" water bottle. Or could it be taste buds so compromised that fruit cocktail (remember fruit cocktail with its' gooey, sweet syrup and small little chunk of a cherry?) now tastes like biting a tin cup?  I also astutely noticed occasional uncontrolled bouts of perspiration (Yes - Resembling what they call "Hot Flashes"...) and more.

The combined effects of chemo and radiation are now with you 24/7. They each generate noticeable side effects, but assuredly these side effects are willingly sustained in the cancer battle. And, as the entire medical community will tell you: "Everyone reacts differently". Well... consider my good fortune when I recount how I sustained/undertook/was subjected to/experienced/and felt each and every side effect which the medical community stated could occur - but everyone reacts differently...

That's right - Mouth and tongue sores, fatigue, drop in energy, loss of appetite, raw throat with pain accompanying swallowing, skin sores from radiation burns and chemo reactions, fevers, itchy rashes which look like a cross between acne and chicken pox, a now all-liquid diet, special soaps, special mouth rinses (several), an open account with Walgreens, lack of sleep, lack of concentration, headaches, special skin care creams, special toothpaste, gallons of "great-tasting" Boost and Ensure to provide basic nutritional supplements, and ...

How about a skin patch for pain as well as intense little pills which - SURPRISE! - create their own need for 4-8 additional laxative pills a day. 

But remember - This is what could occur.    Right....  And now fatigue, pain, and uncomfortableness are dragging your body and morale downwards.

And than... A moment of illumination! A defining turning point! An almost "out of body" conversation...

Dr. Wang, the radiation oncologist, in week 4, turns to look at Colleen and myself and says "...When we compare the CAT scan from your first visit to today's, it is apparent that the tumor is significantly smaller. Here - look for yourselves..."

I saw my wife's eyes tear-up as she beamed a radiant smile. My immediate first thoughts were the relief and comfort this would give to her, our families, and concerned friends. My next thoughts - nano seconds behind the first - were directed to that electronic image of the now-smaller tumor on the screen. In approximate order:

"Thanks to all - The prayers, treatments, and positive thoughts are working"

"This fight is not over until I say it's over... And it's not over until we have won and this cancer loses!"

"Only a few weeks to go - I can handle whatever the treatment demands"

NEXT: "It's not over yet..."   

(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...