Thursday, January 31, 2008

You Tube? I Tube Two Times!

Technology is a wonderful thing. It allows me to sit here in my libary 
(much too small to be an actual library)and report to you on technology 
advances in medicine that have occurred (or not) since the Middle Ages.

This week, the subject is tubing. For those who think this will be a seasonal discussion of happily sliding down some snowy hill, HIT YOUR DELETE KEY NOW!

If you ever visited the Carlsons during our many years in Germany, we probably took you to the Medieval walled city of Rothenberg, home to world famous "Torture Museum." Yet another chance to ESCAPE - it's the little key at the top left of your keyboard.

Well, back in the day, tubes were use to get OUT those nasty fluids in one's body - like blood - which were causing all the problems. With technological progress, tubes are now used more to get nasty fluids INTO one's body, where they may work their medical magic, such as poisoning you.

Take my case as an example. I now have two tubes surgically inserted in my body until such time as the docs decide that they should be removed.

The big tube is a PEG.  That stands for percutaneous endoscopic gastrostomy (PEG) tube. It is used to get fluids and liquid food into my body if I am unable to swallow due to radio and chemotherapy.

 The lower right portion of PEG is surgically inserted into the stomach and held in place on the stomach wall by a small balloon inflated from the right bluish nipple you see on the upper portion of the tube. The uncapped opening at the top is where food and fluids are introduced 
through a syringe that could give vaccinations to elephants and whales. Thankfully, no needle. The capped opening on the left is for medicine, either liquid or crushed to make into liquid.

Thus far, I have had no need to use Mr. PEG, and my docs and Nurse Victoria tell me that they never want me to use Mr. PEG, because if I do so, that means that I may not be exercising my jaw, swallow function, voicebox, and other items that can atrophy due to lack of use.

So Mr.PEG is my parachute. Open only if needed. In the meantime, keep it clean and dry.  And try not to be bothered by a six inch tube hanging out from your stomach.

When we told the doc that Samantha had asked why it was inserted so high (two inches right and just below the left nipple), he smiled and said, "Because that's where the stomach is located..."  What ever happened to high school biology?

The second tube isn't really a tube - it's a "line," specifically a PICC line or a peripherally inserted central catheter. This Mr. PICC (pronounced "pick") is why I may have to use Mr. PEG. 

Mr. PICC is where the chemotherapy poisons are inserted to work their way to the primary tumor at the underside base of my tongue ( vallecula).

The PICC line comes in through the inside of the arm at the triceps and is guided to the area of the heart known as the superior vena cava. That's where the chemo is deposited to begin its journey. 

The chemos being used on me will be Carboplatinum (I insisted on only the most expensive...) which will be given through Mr.PICC at Bethesda and something called "5 FU," (I am not making this up!) which will come home with me in a designer fanny pack and drips in through Mr. PICC for 24 hours.

Recall that the chemo in my case is not expected to be decisive; rather it will make the radiation even stronger.

Chances are that I will lose my hair, but they tell me that it comes back, often in a differing color and texture than before.  Having studied the PICC diagram above, I am okay with a full head of dark hair on top of a body that appears to be younger than mine.

Okay, so the prelims are all done, I've got my PEG, my PICC and my mask, my missing molars still ache and, on Monday, it will be time to go tubing! And then masking with Voldemort...  The only thing I seem to be missing is a SHOVEL.  "Hi ho, hi ho, it's off to weird we go..."

Since you can't come on the chair lift, say a prayer and I'll see you on the high ground!

Love to you all.

Saturday, January 26, 2008

Just Call Me Rudolph Voldemort

Well, Victoria and I have spent the last week traveling to NNMC at differing times of the day to find "the sweet spot" in Washington area traffic flow that will get us from Ashburn to Bethesda and back with the least amount of hassle. There is no such time, although the earlier you go, the more time you get to wait in the clinic areas until things actually open at 7 AM.

Our purposes this past week were to meet again with the surgeons for followup and to "preview" the coming attractions of radiation and chemotherapy. In our chemo preview, we learned that I will indeed have three sessions, but, each "session" will last four days, for a total of twelve chemos. Don't you just love little surprises?

The second best part of the oncology "previews" is the execution of multiple consent and release forms. In these, you acknowledge that there may be certain "side effects" to your treatment, including nausea, hair loss, fatigue, your right ear may fall off, loss of appetite, lack of saliva, minor or major rashes, instantaneous blood poisoning resulting in immediate death, possible confusion as to all the things that are happening to you and occasional diarrhea. Please sign here and initial there, thanks.

The best part of the previews was in radiation oncology, a friendly place over whose door should read the sign "Abandon Hope All Ye Who Enter Here." I was to be fitted with my radiation mask, the device which permits the use of IMRT, Intensity Modulated Radiation Therapy. The mask starts off as a dry piece of a thin cardboard-like material, which is then made malleable by the addition of warm water.

First, I was placed on a table, several neck supports tried until one was found that raised my chin up as high as was comfortable, then a support placed beneath my knees. In with a specially fitted mouthpiece which keeps my tongue in proper position and steady, then out with my hearing aids. Finally, my arms were tied with straps which went beneath my feet so that there would be NO movement while radiation was being administered for about 25 minutes TIMES 35 sessions; however, in this case, a session actually does mean only one day.

The warm damp mask was placed over my head and shoulders and, as it dried to hardness, the staff worked down against the contours of my face to make the fit as snug as possible. As they pressed down on the mask, the only release point for the pressure was the small hole cut for my nose tip, hence the title of this blog.

Now, with children out of the room, you may look at the picture I had them take with my camera. The net look of the mask allows the therapist to point the narrow and weak radiation beams at exactly the same place each time so that the combined effect is lots of radiation at the target.


I suspect that getting "previews" helps educate the patient and inoculate a bit against the unknown. However, if we had been given previews of Ranger School or Beast Barracks as they actually were, I might not know many of my West Point classmates today.

Next week is mostly rest, with a few appointments. Monday, 4 February, 2008 at 0800 EST is H Hour, D Day. I'll be working my way through the obstacles on Slytherin Beach. Before I reach the heights of Gryffindor, I will have rid myself of this Voldemort mask and the reason I have to wear it...

See you on the high ground, with spot reports to follow along the way. Your prayers are my reinforcements.

Love to you all
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Saturday, January 19, 2008

Deal or No Deal?

For the better part of my life, I have been under the military healthcare system.  There, I always assumed that whatever the doctors told me to do, that's what I did - after all, I was Government Issue.

Last Thursday, some of that changed.  I was surprised to hear that the Great Klavern of dentists and oral surgeons had upped the ante from three molars on the right side to five, four on the bottom and one on top.  Why, I asked?  Because the radio-oncologists had now mapped the beams and more teeth were in the path.  Oh, and just be sure, the recommendation now included molars on the left side as well.

Well, not so well.  I objected to any left side teeth being taken since everyone previously had said that they would be at little risk.  So, the docs said "It's your call," perhaps to raise the stakes with left teeth so that I would fold on the five right.  I made the deal, but I recognized for the first time, that there was actually a deal possible.

Armed with that new knowledge, I asked for my gold crowns to be returned to me.  When they objected on policy grounds, I reopened the gambit on right side teeth.  So, the policy was changed and you saw the  gold on Sam's post.

The teeth spaces are actually healing pretty well, and Victoria makes a great smoothie.

The feeding tube insertion was different.  For my Ranger friends, recall when your buddy (like my nice guy, Mark Bailey) didn't kick you hard enough after he put you down with some throw or another.  Then, our friends, the Ranger Cadre, would come over and show both of you how to kick someone when they're down.  That's what my gut feels like right now.  For you civilians, imagine two rounds with Mohammed Ali working on your ribs...

But this too shall pass.  My son-in-law, Travis Lee, bought me an EASY button at Staples, and I drove the folks in the Hospital crazy, at least while I was conscious.  "Well, that was easy" was heard after every attempt to get me under control.

Some healing time now for a week or two, but still appointments at NNMC to prepare for the beginning of radio and chemotherapy on Super Bowl +1.

Thank you for all your prayers and support.

Grip Hands,  Ken

Friday, January 18, 2008

Good As Gold . . .

Dutiful Daughter Samantha's quick update on Kernal Ken:

I spent time with my dad this morning. His teeth are out and his feeding tube is in. He seems to be faring as well as can be expected for someone who had two surgeries in one day. Translation: he feels like he got pummeled in the mouth and kicked in the gut! The bad news is that instead of removing three molars, the dental team took out five. The good news is that dad managed to get out of the hospital with his two gold capped teeth in hand (see picture above)-- something the doctor's assured him NEVER happens! We're all thinking some kind of jewelry should be made!

He's taking the next few days to rest, eat lots of soft, highly caloric food (can you say milkshake?), and adjust to the new situation.
His spirits are still high and he's braver than most. Thanks for your prayers and well wishes. They are just what he needs!
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Wednesday, January 16, 2008

A Message From The X.O.

As his oldest son, I qualify to be Kernal Ken's X.O. (executive officer) And because I am his X.O., I am publishing to his BLOG without his knowledge. (We'll see how long that lasts.) I wanted to inform everyone about his attitude and mood since he learned about his prognosis.

After dealing with multiple needles, scans, and a variety of great doctors, Kernal Ken said, "The chemo and radiation treatment is going to last about 8 weeks. It's going to be difficult but it can't be more difficult than my 8 weeks in Ranger School. During Ranger School, the instructors were trying kill me. During my treatment everyone will be trying to help me. " He then said, "This cancer is ugly but it's not as big and ugly as I am."

I hope this provides you all a bit of insight into Kernal Ken. Rangers lead the way!

Thanks for everyone's kind wishes.

Tuesday, January 15, 2008

Going Live and Going West Virginian

Thanks to the prowess of Chris and Samantha, two of my three tech-savvy offspring, this BLOG is about to go from the Beta version to live. And you are here to witness it!

Since Crossing the LD, several events have occurred. On 2 January, National Naval Medical Center Bethesda went on "the great primary tumor search" with me as the unconscious searchee. After 90 minutes of digging, they found and removed polyps in each nasal passage and found the primary tumor, now known fondly as T2N2BM0, Stage 4A.

In the "more than you want to know" department, T2 means the tumor has a diameter greater than 3 cm, N2B means two nodes besides the primary tumor, M0 (zero) means not apparently metasticizing and Stage 4 A is the highest cancer stage but CURABLE. We have chosen to focus on T2's last name, "A."

The tumor, oro-pharyngeal (or throat cancer), is located at the very back end of my tongue in an area known as the vallecula, right next to the epiglottis which sends food and air into differing pipes. In the 1970's this thing would have been known as Deep Throat, for those of you who can still visualize.

Next, all the relevant departments at NMCC had to examine me in prep for the "Tumor Board" which was held on 10 January. Victoria and I went to otolaryngology, medical oncology, oral surgery, radiation oncology, speech therapy, gastroenterology, nutrition, general surgery and others I have forgotten.

We are told this Tumor Board is quite the extraordinary event. About thirty of the senior staff meet with CT, MRI, X Ray, and PET scan results. For several hours, the senior residents of each department present and then the board develops a consensus approach on treatment. The PET scan, searching for tumors anywhere else in the body, reported none - as well as the thankful absence of dogs or cats in my torso. So, I am now a board -certified cancer patient.

Next stop, the dentist... Huh?

It's true. The treatment will be primarily radiation treatment, supplemented by chemo and finally by some clean up surgery.

The radiation will be applied through a mask designed to let multiple weak beams focus on the tumor from differing directions. Many at once is like "time on target artillery" in the military - very powerful. I will have these radiation treatments five days a week for seven weeks. Chemo will be included in week One, Four and Seven.

Because the radiation will pass through some molars which will die, they must come out before treatment begins. If we wait until they die, they can affect the structure of the jaw when extracted, with bad results. So, first the dentists and oral surgeons.

Second, all this radiation is likely to make the area so inflamed and sore that I will not wish to swallow. I must keep trying, lest I lose swallowing and speaking functions due to atrophy. If I cannot swallow, I will have a feeding peg already surgically placed in my stomach with a tube coming outside into which fluid and nutrition can be inserted.

Therefore, next stop on this E Ride is two days from now, Thursday 17 January. Back to NMCC and surgery for teeth out and peg in. Despite our recent move to Ashburn, I promise that I will try not to look too West Virginian - my daughter Samantha's description for those with missing teeth! Radio and chemo begin after surgery heals, on or about 4 February.

Longer than a post should be, but brings you up to date. Prayers continue to be felt and welcomed.

See you on the high ground!

Kernal Ken

Sunday, January 13, 2008

Crossing the LD

In the military, where I spent 30 years of my life, "crossing the LD" refers to crossing the line of departure, beyond which the enemy is presumed to be waiting.  Hence today's title.  

Several weeks back I sent the following to my West Point classmates, using the same title:


In the immortal words of Mrs. Gump, "Forrest, life is like a box chocolates.  You never know what you're gonna get."

Well, the Carlson family found out what we're gonna get for 2008 - the challenge of fighting Stage 3 squamous cell carcinoma, better known as head and neck cancer.

I had developed a plum sized lump under my right ear, at the lymph nodes, over the previous few weeks.  A needle biopsy was done and the results given to us at the National Naval Medical Center, Bethesda, MD.

The lump is not the primary tumor, hence Stage 3 means wherever "it" is, it must be found....

We are now several weeks down the road whose path is now known but ultimate results unknown.  This blog will provide a travelogue of our journey, probably in much more detail that anyone would want to find in their email inbox.

In the past year, Victoria and I have personally witnessed the power of prayer in the healthy birth of the five Wilkinson Quintuplets, our great nieces and nephews whose odds of all being normal were 60 million to 1. They are all very normal.

If you join us for the likely weekly post here, we humbly ask for your prayers and those of others you may enlist.

Yes, I am a retired Army Ranger and my neck now feels like leather.

Talk to you soon, Kernal Ken