The Rime of the Ancient Mariner

I managed to escape blogging duties last week, thanks to the kindness and cleverness of Victoria and Samantha. Their rich mixture of the events we experienced as an extended family was a clear representation of the "Circle of Life."

As a "vertically gifted" person, it is often easy for me to forget the impact I may have on some when, for example, an elevator door opens and the unexpected crying giant is right in front of you. But they were truly tears of joy as so many emotional events crowded into one large body with one small brain. What a week!

Now we finish Week 8 with both radio and chemotherapies behind but much healing left to do.
The title of this post reminded me of the classic wherein the seaman describes his journey to a wedding guest. I , the Ancient Guy, have made the mistake of shooting the bird, which now hangs around my neck. It's like my weekly requirement to post a blog.


The neck, in turn, fits nicely into the description of the awful situation I have created:

Day after day, day after day,
We stuck, nor breath nor motion;
As idle as a painted ship
Upon a painted ocean.
Water, water every where,
And all the boards did shrink;
Water, water, every where,
Nor any drop to drink.

I believe I mentioned the swallow study they did on me while I was hospitalized. That's where they discovered that I can swallow most liquid consistencies, except clear liquids, which I have a tendency to aspirate. That could cause pneumonia. Clear liquids, unfortunately, make up a large portion of the liquids one would like to swallow when one has a really bad sore throat.
As a result, as I am now in the reverse cycle of Week 5, and need to get lots of mucous out without the benefit of any saliva being created. In Week 5, I could do that with the help of clear liquids. Now, the problem is a bit stickier, pun fully intended.

The Navy has helped out by sending home a portable home care mucous suction machine, see below, which is quite helpful in getting the mess out of my mouth and throat. I love the fact that all the Navy contractor stuff comes in any delightful shade of gun metal gray you prefer.

To get fluids in, Victoria and I are still relying on the PEG tube and whatever else I can get down in the form of a shake or a soup of the right consistency. The external neck burns are getting better and could be almost gone in several weeks. In the next few weeks , we will begin testing to discover whether the therapy has outwardly succeeded at known locations . Various PET and MRI scans are also to be expected to see if the cancer has spread anywhere else.

So, right now, I feel as if we are "stuck, as idle as a painted ship upon a painted ocean." The frustrating part is that we may have entered the cave and slain the dragon, but we've lost the trail of bread crumbs that leads us back out. Victoria continues to remind me that this stage of treatment is one of the reasons they call us "patients." Patience, my patootie! Let's get on with it!

Finally, to celebrate the end of Week 7, I have attached some photos and a video taken by Samantha and Audrey on "Ringing Out Day." They are concluded with some photos of what the gals did for us before Victoria and I got home.

Remember all the balloons and posters you put up as your kids grew up, graduated, got married and had those wonderful grandchildren of yours? I never thought nor expected there would be pay back for any of that - until we arrived home on Monday. I love my family more than I can express in words.

(Poster reads: Way to go Dad! You did it and we are so proud of you!)

We have arrived on the first objective - there are still hills and obstacles ahead. Thank you for your continued prayers and best wishes. Take a break until Monday, then it's back uphill.
I'll see you as we maneuver towards the next high ground.

Good Friday, Good Life

"A day is huge: cancer continues to teach me to live life-not just go through it. When I wake each morning I know I have another day- a day is HUGE. It's always anyone's game! Never give up! There is always hope! Miracles are all around us!"

from the Journal of Christy Hartman Myers

Victoria here, guest blogging again - not because Ken is unable - but because I'm the Queen and I can do what I want! (including usurping the blog of a sleeping husband.) As we are in the midst of this glorious Easter season, Ken and I are both so thankful for our Good life. So on this Good Friday we would just like to share with you some of the Good things that have happened this week and some of the Good people who have touched our lives.

Good friends from the past....

The above quote comes from the journal of Christy Myers (pictured above, with her husband Joe) a long time family friend who left this life earlier than any of us would have liked. Christy was an incredible woman and is our exemplar for how to fight cancer. She did it with grace, humor and determination while continuing to live her life fully for 8 years after diagnosis. We can only hope to live up to her example.

Recently our son Matt put together a wonderful video to support Ken, which many of you participated in. We were so moved and touched by your kind words and loving encouragement. Thank you dear friends - this video came at a time when Ken needed it most.

Good new best friends . . .

As we've gone through this journey with cancer, we have made many new best friends. Cynthia and Reno are two of them. (pictured here at the radiation clinic) Reno is an Italian who loves an American burger. Cynthia met him while stationed with the Navy in Italy. She has been battling cancer for 16 years. They travel to Bethesda from Italy for her treatment. If you ask Cynthia how she's doing, she'll reply, "I'm doing great!" or "It is a wonderful day!" Cynthia says that there are only two things she can control during her fight with cancer - her attitude and what she says to God. We feel blessed that our paths have crossed with this couple - and I'm learning a little Italian on the side from Reno!

Good news in our family . . .

Our niece Megan chose today - Good Friday - as her wedding date! Today a couple will start a new life together. Although we can't be there, we are excited for them and wish them great joy and years of happiness as they start this journey together. It's quite a trip! (take it from someone who knows.)

While waiting for the elevator on Wednesday as we left Ken's chemo treatment, the Big Guy started crying. One of the medical staff asked if she could help him. I said, "No, he's okay, these are tears of joy." Two hours earlier our 8th grandchild, Tessa Grace Carlson (proud parents Matt & Mindy), arrived on planet Earth, healthy, strong and drop dead gorgeous! It was a really GOOD day!

Good Friday ...

Today Ken completed Chemo cycle! He only has one day of radiation left! Although the next two weeks will be difficult for Ken, this part of his treatment is almost over and we both feel pretty darn GOOD about that! As we start this Easter weekend, we will gather our family together and rejoice in this season of hope and renewal. We are grateful for our Savior, for our many great blessings, for good family, good friends and a good life.

See you on the high ground.

In Bedded vs. Embedded

Well, Week 6 has now ended of my seven-week therapy – but certainly not as anticipated in most scenarios. It began with pain medicines.

I am not a doctor, nor do I play one on TV, so recognize you are reading the words of a patient, and DO NOT TRY THIS AT HOME!

The matching of the right dose of the correct pain med with the correct pain of the right cancer is like one of those algebra problems where the variables and the unknowns don’t match.

The case of Oxycontin SR and Oxycontin IR case is a good example. Oxycontin SR is a longer lasting, sustained released painkiller that is strong enough for most cancer pains. Oxycontin IR on the other hand is an immediate acting pain med when needed.

Last Friday, Victoria and I left Bethesda with instructions to increase the amount of Oxycontin (SR) as the pain was increasing with the effects of both chemo and radiotherapy building up from weeks One and Four. We were told to increase the Oxycontin IR to 50 by cutting one additional tablet in two, making two 20s and one 10. Oops…

There were actually two NNMC Med folks involved in the “oops”, each from different clinics, both of whom are now aware of what happened. “What happened” was that Oxycontin SR is not designed as a long acting med which can be made into several smaller long acting meds. Rather, it becomes something weird, something I now call a “Loopy Land Special.” Cutting Oxycontin IR in half is perfectly fine, but not what was directed. Confused? So were we.

I became loopy, not processing info correctly and hallucinating a bit on the reality around me. Victoria had the kids come for Sunday dinner, and I asked for a special priesthood blessing from Travis and Christopher, since we all knew that something wasn’t right.

On Monday, we were back at Bethesda for the start of Week 6, and describing to the docs the events of the weekend to include a fever that had arisen on Saturday night. In just a few short minutes, I became an imbedded blogger at The National Naval Medical Center, required to stay until my fever was gone and my pain meds were behaving as expected.

While imbedded, I am sure I was asked to do a story on the role played by the Washington medical bureaucracy in the continuing controversy over Global Warming.

First, I had to sort the massive amounts of evidence and testimony that GW (the President) was responsible for all things bad on the planet, from those who had confused the President’s initials (GWB) with Global Warming (GW). Then, I had to sort the connections between GWB, GW and the Global War on Terror (GWOT). Clearly, we had a shortage of consonants.

But, in Global Warming, the Navy had collected some key information and developed new technologies:

Here is a photo of the one of the special collection uniforms worn by those of us imbedded at NNMC. The uniform is shown with pieces of skin from drowned polar bears pulled in from the Potomac River.

This is a super-secret data collection cart which collects temperature and CO2 measurements as Navy agents move throughout this region. 200 degrees Fahrenheit was just an average reading for this week.

This gross picture is what a human neck looks like after exposure to short periods of GW. By sheer coincidence, 5 weeks of chemo and radiotherapy for cancer produces a similar result. Al Gore claims that the government is hiding photographs like these as part of “An Inconvenient Truth.”

This code word training device was developed by Al Gore as a technology which will allow humans to communicate with other planets, themselves also possibly subject to global warming.

To speak to a viable planet, Mr. Gore speaks through the inter-planetary megaphone to the light blue orb and offers his full range of environmentally sound programs that will benefit an early, emerging society. The dark blue planets, those to die “The Day After Tomorrow” are offered by Gore and Associates programs for currently civilized, but overly rich planets that must change their life styles. Finally, the black planets are those, such as our own, for whom all hope is lost and who are forced to listen to Rush Limbaugh on the megaphone as their planet becomes yet another “ball of fire.”

Thankfully, having my own special collection uniform made me pretty inconspicuous among others, but the security was extremely tight as shown here.

I became concerned that my “loopy land special” drug problem was not being resolved when I swore I heard on the radio that the DJIA, falling for weeks, had just jumped over $416 per index share. I shook my head to clear the cobwebs when I read that crude oil was now selling at over $110 per barrel. And I knew there must be a problem with the drugs when someone reported that 22-year-old women were being hired for $5500 by the Governor of New York to assist him with business in Washington.

So, I went back to practicing my Wong Baker Faces because I think that I might need them more in Week 7.

Jack LeCuyer found Victoria and me on Friday night. I think he was sent by the Navy to find the blogging mole. I will have escaped by the time you read this blog post if the “Ticket to Ride” works.

By then, I will have spent all of week 6 imbedded in “the belly of the Beast.” The people continue to be wonderful, their medical care superb and their attitude positive. Heck, they even fix their few mistakes… And the chances to catch a spare autograph are pretty good!

Thanks for your prayers and support. See you on the high ground!

Embedded @ Bethesda Club Med

Photo courtesy of the actual Club Med

Faithful "Leatherneck" Readers -

A quick update to let you know that much like this starfish pictured above, my dad is currently lying around at Club Med Bethesda, waiting for the heat (aka fever) to subside so he can come back home with the best nurse we've seen so far. (yes, that would be my mom!)

Five days in the hospital have given him plenty of stories and pictures to share with you all, so stay tuned - he'll hopefully be home tomorrow and posting on the blog himself. Thanks for your prayers and support!

See you on the high ground.

Samantha Carlson Lee

7 Mar 2008

Okay, Gang. This post represents the bits and pieces of items covered before which may need updating, as well as some new stuff too incredible to skip. WARNING: Some have said to let them know when things might get too graphic so they can scan and/or pass. This may be one of those posts.

First, I have discovered a remarkable similarity between throat cancer patients and snakes. Here's a picture of 300+ pound, 18 1/2 foot long Boa Constrictor killed by my Vietnam Cav Troop near the DMZ. At the time (March 1969),it was reported by the Stars and Stripes as being the largest Boa ever found that far north in the country. His carcass was burned after several troopers got the skin that they needed to make wallets and other trophies.

He starts today's post because, like snakes, people also shed their skins. Dandruff, flaking skin, etc. are all common to most. However, unlike most of you, throat 

cancer patients under radio and chemotherapy also shed THEIR TONGUES. I'm not going to show you that, but underneath your tongue and along your cheeks are a spare set of tongue and cheek tissues, just waiting until the burned, treated ones come off and are replaced by the rookies. This is one of the least pleasant experiences you can imagine and has been the "highlight" of week 5. Thankfully, the docs are ready for this set 0f events and an upsurge in pain meds makes this close to tolerable.

Victoria has been providing me with a daily thought on a 3x5 card each morning. For Week 5, they included the following, which reminded me of the snake and my throat.

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." -- Mother Teresa

"If you're going through hell, keep going." -- Winston Churchill

"I have sometimes been wildly, despairingly, acutely miserable, but through it all I still know quite certainly that just to be alive is a grand thing." -- Agatha Christie

"It is said an Eastern monarch once charged his wise men to invent him a sentence to be ever in view, and which should be true and appropriate in all times and situations. They presented him the words: 'And this, too, shall pass away.' " -- Abraham Lincoln

My love and thanks to Victoria for inspiring me each day!

When faced with this kind of adversity, I look for sources of inspiration. Of course, the Lord,  my family and my Country are my first thoughts. And I have found myself praying a lot and know that friends and family are praying too. Thank you.

Second, having come from the Lord, I know now how I got here and where I have been. Below you will see a picture taken by my son Christopher on 8 June 2006, forty years to the day of my graduation from West Point. We were there for an Association of Graduates golf tournament and just managed to be on Trophy Point when a storm blew in. I call it, "A Forty Year Tribute To Fruit and Milk." (My class was the first to get fruit and milk during Beast Barracks because we were losing so much weight.) This vista is one of the most beautiful views in America and for me represents the great challenges during which my class came together.

Lastly, knowing where I've been and what I've accomplished with the help of so many others, also tells me where I am going - hopefully not too soon. The short clip below was recorded at the Cadet Chapel in 2002, on the 200th anniversary of the founding of West Point. The producers of the movie "We Were Soldiers " needed a group singing a song that, in the producer's and author's words, "sounded 200 years old". What a coincidence! This original version was recorded by the Cadet Glee Club and was inserted in the closing credits of the film. You can click here for this inspiring song. The lyrics are also shown.

So, Week 5 , not so good.  But then again 40 years ago in Dahlonega, GA, things weren't exactly a picnic either.  Sorry this post was delayed, but I now know that many of you tune in on Friday.

We will improve!  And we'll see you on the high ground.

Blend It! Plunge It! Slurp It!

When Ken and I got married it was almost sacrosanct to get a blender as a wedding gift. We didn't break with tradition! Our blender mostly sat in the cupboard or in a box as it moved with us from place to place. Occasionally I would haul it out of its dark cupboard , quickly use it, and hide it again.

No longer is it the neglected kitchen gagdget! It, in all its 70's glory, is now proudly displayed on our kitchen counter next to a cool antique cubby and some great glass crocks holding flour and sugar. Finally this vintage Osterizer has come into it's own by becoming the most used item in our kitchen! All hail the mighty blender!

Due to the type of cancer Ken has, at this stage, all of his food has to be easily swallowable. (Think smoothie texture people!) Every patient is different. One person we heard of ate nothing but 12 cups of custard a day! (Yum) Another, towards the end could only stand to swallow sour cream due to its cooling nature and creamy texture. One wife got creative and made an entire cookbook of her special recipes, which she shared with us. But for some reason, canned salmon with vanilla Ensure didn't appeal to Ken's fine pallate. (nor did turkey baby food with vanilla Ensure . . .go figure?!)

We have finally come up with what works best for Ken right now - though it could change. So as a treat for you today, and as Ken's first guest blogger and executive chef of the Carlson Cancer Cuisine, I (Victoria, aka The Queen Vee) thought I'd give you a peek at what's keeping the big guy going - with 3000 calories a day! Here's how we do it:

Breakfast: The 1000 Calorie Shake Recipe

One scoop whey protein

One cup true, real, all the fat, vanilla ice cream

One container Ensure PLUS (chocholate, vanilla or strawberry)

One cup full fat yogurt in flavor of the day

Canned fruit of your choice

Add 2% milk and whole cream, baby!

Not only does this breakfast provide 1000 calories, it also gives Ken 24 ounces of his daily requirement of 110 ounces of liquid! Bottoms up, Ken -in this fabulous cup given to Ken by a really thoughtful HIGH SCHOOL classmate, Mary Cady. At least we know he won't forget his name.

We hesitated using Ken's feeding PEG tube (hereafter referred to lovingly as "The Pegster") because we didn't want him to lose his ability to swallow. But after a week of rapid weight loss and a bit of a chewing out by the doctors, we embraced The Pegster for lunch and snack times and found that it has taken some pressure off of Ken, allowing him to focus his swallowing around breakfast and dinner times. He now takes one third of his daily calories through The Pegster. This could increase toward the end due to swallowing difficulties.

Lunch: The 900 Calorie Plunge Recipe
2 cans Isosource liquid (do not try at home . . . nasty, nasty stuff)
1 container Ensure
Secret Ingredient - 1/2 cup straight prune juice (mmmm...)
1/2 cup salted water

Personal aside by daughter Samantha who is editing this post: Watching the plunge is a real treat. Mom and dad have a little system I call the Pinch n' Plunge. It involves Dad pinching the tube, mom filling the syringe and saying "Go!" when she's ready to plunge. They do this in quick sucession about ten times with the delectible recipe above. When it's done, Mom turns to Dad and says, "How was it, dear?" He lovingly answers, "Delish!" It is a complete riot!

The Pinch n' Plunge by a great team!

He looks happy (and really good, too). It must be tasty!

Dinner: A pureed soup du jour followed by the second 1000 calorie shake of the day. His current favorite is egg drop soup from the Asia Cafe. He also favors Campbell's Bean with Bacon run through the blender. The good thing about both soups is they are high in protein, which he needs.

.

Dessert: As if he hasn't had enough ice cream - and the doctors have told him to have as much as he wants - some evenings he tops it all off with a NASCAR sponsered Klondike Bar zapped in the microwave for softening.

I log everything Ken eats and drinks into a food journal. At the end of the day I tally up his calories and fluid intake and if it isn't high enough we do the "Pinch 'n Plunge" to make up for the missing numbers.

I've ventured a guess that he may never want soup and smoothies again after this, but he says he will. One nice thing about this for me, is that after 38 1/2 years, I have a break from cooking. Now if I could just get my kids to quit coming over for dinner . . .

We're halfway through Ken's treatment - a real milestone. We've hit our stride and Ken's spirits are good. The next few weeks will be the most challenging with The Pegster becoming a more frequent option. We feel your prayers and we'll see you on the high ground.

Washington and Butthead

Happy Birthday, George Washington!  A guy whose integrity and character went a long way into making America what it became.  Thank you, Mr. President.

Today was also sleet, snow and freezing rain day here in metro DC, which meant that the roads were, in the immortal words of my good friend, Bill Speer, "slicker than deer guts on a door knob..."  The lovely Miss Victoria Galore, soon to join Joe Gibbs Racing, made it through like the champ that she is.  My internal gyroscope told my sleeping body that at no time were we moving perpendicular to the long axis of the car!  Good job, Angel.

Oh, and I did I mention that we finished three weeks of therapy today?

Here's some medical things that we have learned.  The head bone is connected to the butt bone.  We know that because that's how Beavis's friend got his name.  What happens between those two bones is a little more complicated, but educational.

In cancer, one's metabolism speeds up dramatically, trying to replace the cells that are being attacked.  If you just eat normally, you will lose weight.  In throat cancer, the problem is multiplied because you cannot "just eat normally."  Hence the PEG tube into my stomach.

We had tried for  2 1/2 weeks to avoid the PEG tube, because swallowing and jaw movement are also important.  But we had our priorities backward.  First, stay hydrated and don't lose weight; second, keep swallowing as much as possible and exercise the jaw.

Well, working without the PEG tube, I had lost 9 pounds in just over a week.  The docs

 hit the brakes hard.  So now PEG is my primary means and throat is secondary.  I regained 5 pounds in two days, thus avoiding the IV hydration drip they were about to give me. Taking in smaller amounts through the throat is also much less painful. 

 

From the dental extractions until now - just a month - I have gone from Tylenol 3 to Percocet, from Percocet to morphine pipette, and from morphine to Oxycontin and Oxycodone, where I am now.  Wow, you're thinking - this guy is in trouble.

Docs jumped in early to assure both of us that no throat cancer patient has ever become addicted to these heavy duty opiates.  Why?  because they are not making me high in any way (just comfortable enough to swallow a little) , when the pain stops, the drugs will stop and I won't want any more.  The rethinking of the pain killers is what turned my weight around.  Now we must continue into the tougher weeks.

As the journey down the bones concludes, the butt bone doesn't like pain killers which take too much moisture out coming through the Erie canal, or whatever they call it. So the butt bone goes on strike, sorta like the Screen Writers Guild did, and the result is the same - no "high quality material" for the evening show...  not even re-runs.

Docs can fix that as well, but the growing list of drugs coming into TAJ M'home has now caught the attention of the DEA whose agents are dressed as Honduran builders throughout the neighborhood.

So, how to relax through all this?  Get up at 0605, step out onto the back porch and check out the scene to the East, below.

Thanks for your continuing prayers and good wishes. See you on the high ground!

Ken