Friday, February 29, 2008

Blend It! Plunge It! Slurp It!

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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.

Friday, February 22, 2008

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!

Friday, February 15, 2008

Allies and Angels

Week two of Radiotherapy has now ended, with a three day weekend and no trips to Bethesda until Tuesday!

Last week I noted that side effects start in week two and three.  While true, I have had few side effects so far.  However, overlooking the obvious, the PRIMARY effects of both radio and chemo therapy do appear in week two. Ouch...

In this war, I have discovered that the mucous membranes of the mouth and throat are like Israeli soldiers - doesn't matter what the attack, they keep on fighting back.

However, the saliva glands are a lot more like French soldiers - they fire a couple of shots and run away.

The radiotherapy has attacked the tumors pretty effectively, according to the films.  But after just a week, the saliva system booked out, leaving the mucous membranes firing on all cylinders.  Yuck!

The result is that my mouth and throat are awash in thick mucous, stuff which would go away if only there was some saliva to help it dissolve.  This creates an unhappy mouth which has now grown sores and developed thrush - both of which  give one a sore throat unlike any I've ever had.

Picture this - each morning, I awake to discover that I've SWALLOWED MY CAR KEYS which are stuck in my throat.  Much of the morning is spent trying to resolve that dilemma while heading back for yet more time with Goldfinger.  So much for biological allies.

There are medical allies, of course.  Much is focused on trying to keep my mouth able to swallow and most of that is in various mouth care and  mouthwash products.

Some are for saving teeth, some are for dry mouth, one is for thrush and my favorite contains lidocaine, which helps dull pain.  Each comes with a helpful suggestion - "swish and spit" or "swish and swallow."  But my Beast Barracks squad leader told me never to do anything that had to do with "swishing..."  The accurate instruction would be, "gag and retch."

Finally for this week, angels.  We all have them, and I hope most of you had the chance to thank your angels yesterday on Valentines Day.  I have a bunch of angels for whom I am grateful - including you!

Thought I'd share two pictures of some Carlson angels.  These are my Denver angels, Whitney and Olivia, along with Matt and Mindy.  A new Denver angel will arrive in a few weeks!

The second is a picture at New Years of the Northern VA angels, Chris, Hannah and Soren Lee as well as Jonah and Samuel Carlson.

Of course, the head angel of all of them is the lovely Miss Victoria Galore, who keeps us all in line.

Going through cancer therapy together is a reaffirmation of the 38 years we've been roommates.  I don't know how I could even begin this journey without her by my side.

We have discovered, however, that as she drives to and from Bethesda each day, the best use of my time is to ignore the traffic and her driving, instead checking the inside of my eyelids for small holes...  Live and learn!

See you on the high ground!

Thursday, February 7, 2008

The Flying Circus

Week One of Therapy ends today, Friday 8 February - Samantha's Birthday! 

Out the door from Ashburn at 0715, into Bethesda Radiotherapy at about 0820, depending on traffic.  Darkened room, strapped down, mask on, hands tied to feet, a whirring machine spraying me with weird colored lights - the hardest part of all this is to remember how to relax. 

 Here's the image I have.                                                                                                                                                                                                                                                                               
Dark room, metal table, strip to the waist, mouthpiece in to keep mouth open, mask on, hands and feet strapped down, whirring lights and absolutely no movement.  I have to keep remembering that when Goldfinger tells me that "he doesn't expect me to talk, he expects me to die," that I must mention "Operation Grand Slam," that magical phrase which will suddenly cut the switch on the machine.

After about 25 minutes of the machine this week, the switch has cut and I have been allowed to exit the dungeon and go have a mid-morning snack with that nice young lady, Victoria Galore.

Then upstairs to Chemotherapy, a room full of lounge chairs filled with what appears to be a social club of ladies with chemo tubes tucked into their collars, very elderly with blood dripping in from overhead IV's and seniors like me who are getting drugs through arm catheters or ports in the chest.  Lots of jabbering among customers - screws up my concentration on reading cancer bulletins and working Sudoku.  But a much more pleasant, hour-long experience than the 25 minute Goldfinger machine.

Just one week of therapy (of seven) has expired, yet look at the following picture of the "stuff" we have received to use each day. 

And this is just Week One.  I think the message is, if you get cancer, immediately hire a contractor to increase the size of your bathroom!

Now, don't get me wrong - we are very pleased with the great medical care at NNMC and all the supplies they provide.  But some stuff is not only needed, it is just flat useful.

For example, here the electronic porta-pak they provided to me to pump that most incredibly named chemo drug,  5 FU, into myself 24 hours a day.  I'm seen here with some hair, since most will be gone in the next several weeks.  

In the second photo I have donned a baseball cap sent to me from a friend in the Department of Physical Education at USMA.  You can begin to see what useful means.

Finally, the third picture reminds all that just because  an old geezer is wearing  a chemo device doesn't mean that he is without his concealed carry license.
Extra points for the blog viewers who can identify the weapon.

So, Week One - not so bad.  Side effects start in Weeks 2-3.

Thanks for your continued prayers.  I'll see you on the high ground!