Terrapin Station

Here is a good story

This past weekend we went to Kerens, where Ken's sister and her family live.  We enjoyed their church's Christmas play and had dinner together afterward.

As I drove home, I thought how lucky I feel to be a part of that family.  Good as gold, they are. 

I didn't realize until afterward the hidden gift of the day.  Ken was telling them that he is feeling better, really he is; better than he has in years.  He would make a typical Ken joke and they would grin at each other and say, "he's back!" 

I have been seeing it in the last few months and weeks, but this was a different kind of seeing: looking through someone else's eyes.  (Four people's eyes, three of whom have all known him much longer than I have.)  The last time we were there was in March, and he was feeling really terrible. 

There have been several periods when he didn't think he was going to make it.  For a while he didn't want to. 

But, today, he is back. 

Welcome to Holland

I found this article on a blog I follow, Fat Little Legs.  The author was very ill with her first pregnancy, and subsequently she lost over 100 lbs. (with Weight Watchers) before attempting the second one.  Her second child, Lily the Miracle Girl, was born with Turner Syndrome, and you will learn a lot about that condition there.  I commend it to you.

The excerpt below is actually from a reference in a guest post on Little Fat Legs, and I love this metaphor for what it's been like to have a life-changing illness & treatment in the family.  We weren't particularly planning an exciting new thing in our lives, but we WERE planning to have 2011 be a certain way.  The company would go forward as planned, and my work would, too.  We would ride the motorcycle, and visit family, and work in the yard. 

Things look different now.  We have grown closer, learned to be kinder and to cherish one another regularly.  We take nothing for granted.  We are learning not to put things off.  And we have both learned that we can live through a lot of things we didn't know we could.  As AA's How it Works says, if we had been told up front what this would be like, we would have said, "What an order!  I can't go through with it!"  But here we are. 

 

I found “Welcome to Holland" while I was pregnant with Caroline. The essay was written in 1987 by Emily Perl Kingsley, about having a child with a disability. The piece is given by many organizations to new parents of children with special-needs.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

So you want to feed a blenderized diet...

A-ha-ha!

You probably don't actually WANT to do this. It's not on most people's Top 10 lists. But it can be done and it is far, far healthier for the eater (MHO) than a diet totally made up of formulas like Ensure, Jevity, etc. Hospitals and dieticians will deny this; that's okay. You are in charge of your eater's food. (Do see my recent post with a letter from a dietician who gets it...) and see also my sermon^* below

About us: A little context always helps. My husband Ken was diagnosed with squamous cell carcinoma of the head and neck in May 2011. It was discovered via biopsy of a lymph node that had been swollen for several months. There was no visible sign of the cancer and he had to have several biopsies to find the primary sites in his right tonsil and base of tongue. We were fortunate it was discovered so early; he didn't need any surgery prior to treatment. He is 61 years old and never smoked, drank moderately, did not test positive for HPV.

I am aware that feeding an adult is entirely different than feeding a child or cognitively disabled person. In the first case, your amounts and possibly foods would vary. In the second case, if the person were not cooperating or were actually fighting against the tube feeding...it would be extremely difficult. So, I hope this information helps you, but your mileage may vary.

And, please do understand that I am not a doctor or any type of medical professional.  My views are my own and represent only my own knowledge and beliefs, distilled from a good bit of research.  Take what you like and leave the rest. 

PUBLIC SERVICE ANNOUNCEMENT

Did you know that Human PapillomaVirus (HPV) is the leading cause of head and neck cancer in men? What this means is that men from ages 9-26 (at least in the US) can be vaccinated against HPV and their risk of contracting the disease that caused me to write this post can be greatly reduced. See this link for news about the linkage and also the Centers for Disease Control website for more detail. Please share this information widely. If we can prevent just one case of this horrible disease through the spread of information, my work here will be done. :)

SECOND PUBLIC SERVICE ANNOUNCEMENT (or, SERMON)^*

Did you know that cancer eats sugar?  Cancer LOOOOOOVES sugar.  If you were doubting that, just think about how a PET scan works (this is the type of test used to determine whether and where cancer is present in a body.)   Check this out from PetScanInfo.com:

Before a PET/CT scan, the patient receives an intravenous injection of radioactive glucose. Many cancer cells are highly metabolic and rapidly synthesize the radioactive glucose. Information regarding the location of abnormal levels of radioactive glucose obtained from the whole-body PET/CT scan helps physicians effectively pinpoint the source of cancer and detect whether cancer is isolated to one specific area or has spread to other organs.

So, the procedure is that the patient gets an injection of radioactive glucose.  They sit very still and quiet under a warm blanket for about an hour, then they are put into the scanning machine.  The waiting period allows all the glucose to go to the area of inflammation in the body: the cancer.  (Moving around during that time would cause it to go to muscles, etc.) 

Here is a picture of three different kinds of scans on the same person.  The PET is on the right:

See all that beautiful rainbow of colors?  That's where the cancer is, going "nom nom nom" on the nice sugar that was just provided to it. 

So it seems to me (and someone will correct me if I am not correct here) that:  Cancer patients should avoid sugar. 

And formulas?  Are made of sugar, with vitamins and other nutrients added.  Seems like a great reason to stay away from them - to me.  (STEPPING OFF OF SOAPBOX)....

 

SO: BLENDERIZED RECIPES AND FEEDING

- The essential thing to remember is that anything you can eat by mouth, you can blenderize in a machine like a VitaMix or a BlendTec. (I don't care which one you use; I have a VitaMix and it works great, but I've heard good things bout the other, too.  Do your own research there.)  

- I’ve found with my VitaMix that I get best results at liquefying things if I:

1) Add a sufficient amount of liquid…enough to cover or just slightly “float” the other items in the blender carafe usually works, at least to start with

2) Warm the ingredients before blending. Ken preferred blends at approximately room temperature, so that’s what I was going for…but just-cooked food works fine, it will cool off or you can drop an ice cube in it. What you don’t want is to blend cold ingredients. Yucky.

3) Add items in stages, with the big / tough ones on the bottom…like chunks of meat. Get them mostly blended before adding other things.

4) Increase blend speed slowly from 1 to 10, holding onto the top of the carafe if it’s jumpy. Then flip to 1½ minutes on High speed; that should be enough to liquefy everything well enough for tube feeds.

5) Oh, don’t leave a spoon in the carafe when you turn power on. You will have to buy a new carafe. (Sad Face.)

OTHER GENERAL COMMENTS

- I prefer stock to broth if buying it at the store. Better nutrition. And I used A LOT of stock this year…so most weeks’ shopping included a couple big fat rotisserie chickens from Sam’s Club, which I ate and included in blends, and the carcasses of which I used to make stock (add a little apple cider vinegar to help soften the bones and bring out minerals).

- For feeding with syringes (using the plunger): Regular bolus syringeswith the big rubber stopper (see photo at right) are intended for ONE use only and will get harder and harder to use as you wash them. My often-sore hands were miserable trying to force the plunger in for feeds, and we had several messy accidents. Two words: Squirrel Syringes! These are great syringes with O-rings instead of the wide rubber plunger, and they work GREAT and last forever. After a while you may need to oil the O-ring and the bottom inside of the barrel the first time it’s used after a wash. They are called Squirrel Syringes because you buy them from a place that sells supplies for feeding orphaned birds and squirrels. The one I used was The Squirrel Store http://www.squirrelstore.com/ and they are available under “Rehab Supplies.”

Below is the O-ring syringe from Squirrel Store.  So nice.  It IS food-grade plastic...someone from the Blenderized Diet discussion list worked with the Squirrel Store folks to determine that. 

 

 

 

 

- Toward the end of tube feeding, Ken determined that gravity feeding was more comfortable for him than using the syringe with the plunger. I needed to make blends thinner for that. This can be accomplished with more broth, water, etc.

- If a blend doesn’t have much fat in it you may want to add some cold-pressed flaxseed oil or coconut oil. Both are good for health and weight gain and the fat helps the blend to flow.

- As Ken started to feel better (at least paying attention) I made sure that all the blend combinations “made sense” so that he could taste a tiny bit of it. I was trying to get him to connect what he was getting for nutrition with the tastes. In general, you can blend anything and it doesn’t matter what you put together because, as we said when we were kids,
“it’s all the same once it gets to your stomach.” But if a mouth eater were to get juice, meat, and milk in one blend it might not taste great. It was a good theory; HOWEVER, what we didn’t know at the time was that radiation had caused a stricture in the esophagus and it was only about 2 mm wide. So he couldn’t really swallow anything, anyway. (Now that he’s had a dilation that’s getting better.)

- If the blend is foamy after blending, adding a little bit of water and a quick stir usually helps. Foamy blends = gassy eaters. Not good.

- It didn’t usually work to keep blended food more than 1-2 days in the fridge. I did freeze a lot of 2-cup Glad containers of food and that helped, especially when things would get crazy and I didn’t have time to make up a blend before I left for work.

-  We went to Galveston with friends while he was still tube feeding and I pre-made and froze all his food for the week. It worked out fine. 

- I always steamed veggies besides things most people would eat raw, like lettuce and tomatoes. Raw veggies upset his stomach.

WHAT TO BLEND

- My basic formula was to try to create a meal’s worth of nutrition in each blend. Getting that to include enough calories in the amount of food that the eater can tolerate is tough. I found that protein was hugely important there. Quinoa is a great source as are wild-caught fish & other meats.

- Here are some combinations I have used with good success. Quantities, I had to eyeball it. I learned pretty quickly. I could usually get enough for two feedings from one blender carafe. (Ken could only tolerate about 2 cups of food at a time…part of the reason his weight gain has been so hard.)

- Salmon, Quinoa, Spinach, Stock

 - Pork Roast, Brown Rice, Collard Greens, Stock

- Blackeyed peas, quinoa, green beans, corn, stock

- Roast chicken, peas, romaine lettuce, tomatoes, stock

- Banana, berries, protein powder, V8 Vegetable Fruit Juice

- Lactaid Milk, protein powder, berries, spinach or kale

- Yakult is a probiotic that comes in 5-packs of little bottles. It’s by the yogurt in the dairy case. I added it about every other day to the breakfast blend. It helps keep or get the gut flora to the right place…we had a lot of trouble with thrush due to chemo.

 

 

 

RECIPE SOURCES

- I also made a lot of recipes from www.DrinkYourMeals.com but added flax or other oil to most of them as they are Zone Diet balanced. I needed my eater to gain weight, not lose or maintain it. You can get a free account on there as a tube feeder, and it includes advice from a dietician. They also have a Facebook group with the same name.

- A great resource is the blog at http://youstartwithatube.blogspot.com/ There is a Facebook group for them called Blenderized Food for Tubies.

- Great Q&A help at the Yahoo! group called Blenderized-Diet.  You need to join the group to participate, but I found it very helpful. 

- The People's Pharmacy book called Recipes and Remedies.  Good information, too. 

- Several library books I got from my local branch library.  I had them working overtime getting me books on cancer caregiving, cancer nutrition, etc. 

WHAT DIDN’T WORK FOR US/CHALLENGES

- Any kind of commercial formulas . I hope this is not true for you. I think an all-formula diet is not good, but if your eater needs to gain weight, they are a big help.

- Blending scrambled eggs. Too foamy.

- When Ken was in the hospital for a week in early December, I really had to work with the staff about his food coming from home, from me. They wanted us to try a formula, and given the difficulty we'd had with getting weight on him, I was willing.  Sure enough, he got nauseated after a few hours. 

Their main problem seemed to be, not whether he was getting sufficient nutrition, but where I could store the food.  Early on I was told there was nowhere I could put it in a fridge or freezer.  REALLY?  I finally threw a little fit and after some bickering among the staff, they found a place for it. 

The hospital was 3 blocks from our house, so I could go home and make more food, BUT that always seemed to mean I missed a doctor visit.  Not good.  One time I even went at 4 am to ensure I didn't miss a doctor...and I still didn't get back in time.  :) 

Friday Five: Looking Forward and Back

Over at RevGals, Sally writes:

A simple Friday Five for a busy part of the year; indulge me by sharing two fives:

As you look back over 2011 share 5 blessings; they can be as grand or as simple as you like; if your year has been like mine, they are probably a mixture!

As you look towards 2012 share 5 hopes- again, anything goes!

1) Ken's cancer treatment this year didn't turn out anything like we thought it would.  Still overcoming obstacles.  We were blessed by love and support from people near and far: church, web, RevGals, family.  There were nurses and one particular dentist who turned out to be angels. 

2) Perhaps the greatest blessing is that he has now put together a week of good days.  That is the first since before treatment began in June.  He's out on a motorcycle run right now and I'm delighted.  Gorgeous sunny weather and great for riding. 

3) Internet community of tubies...people who eat or feed someone a blenderized diet...has been invaluable.  Ken was never able to tolerate Ensure or other medically created formulas for enteral feeding, and I learned so much from the folks online about using a Vitamix blender to create varied, nutritious, and tolerable meals for him.  Especially I met ("met") Aadhar O'Gorman, a fascinating fellow in Australia who has been a pioneer in this area...while his degenerative condition is bringing his death ever nearer.  His writing about these things is fascinating and moving, and his plans for a Natural Burial appeal to me greatly.  Check out Entropy and Light at this link. 

4) My parents have endured ongoing health challenges but are well supported by their church, friends, and my local sister and her family.  For self-preservation I have had to set boundaries and get clear that Ken and his care was my priority this year.  I have not been to San Angelo but once since May...for a great 168th birthday party that honored both my parents (Mom was 80 and Dad turned 86).  They have a new lady named Velma who comes in and loves and cares for them.  I am delighted by this.  I want to be there but can't, and I'm glad that she and Nancy my sister can. 

5)  Our daughter Holley is doing so well and I'm so proud of her.  At 32 she is working as an EMT and is building a house in the Houston area.  And while this year has been extremely challenging for Brandon (22) and for our relationship with him...I truly believe we have all learned from it.  He is working at UNT in Facilities Management and I am proud of his commitment to that job and learning new things. I guess this one belongs in the Hopes area too.  We hope so much for our kids, especially their taking responsibility and learning to be happy and productive away from us.  

6) Too important to leave out...Amy Haynie's ordination to the diaconate in May and to the priesthood in December.  What a glory to God.  She came to visit Ken during our December week in the hospital (the week prior to her priestly ordination) and as I watched her minister to both of us, and anoint him and pray, the rightness and trueness of this long-denied vocation flooded me.  The Spirit was present in that place.  Thanks be to God.

Hopes

1) I hope that Ken continues to feel better each day.  I hope that we can find a doctor/nutritionist/other person who will be ideally trained to help him create a plan of moderate exercise and body-building diet to regain the strength and muscle tone that the year has taken from him. 

2) I hope I can (and will!) now concentrate some more on my own body and soul and their needs.  This week's vacation has amply illustrated that, once all the responsibilities of work and Christmas "let down" I sort of collapsed.  Including literally; I had a bad fall in the driveway a few days ago and I'm all beat up.  I am certain that is my body's way of saying, "Hey...slow down and pay attention."  So here I am. 

3) I chose a word for the year, which was by invitation of Christine Valters Paintner at Abbey of the Arts.  Here is what I wrote at the blog: 

My word for 2012 is "window." This is important to me in many ways.

In 2009 I changed jobs and was moved into a small room without a window. I loved the work but hated the enclosed feeling; it felt like a punishment for 2 years.

Several weeks ago I had the opportunity to move to a new space with TWO (2) windows. It's on the third floor of an old building and I glory, glory in the light, the views, the rain, the birds and squirrels.

And my husband had cancer treatment this year. We are looking forward from a sad and bad year to a new and healthier, happier one. We are looking into the window of the new year for our future.

What will we see?

I am physically washing windows of my home in this vacation.  I will be focusing on this through the year...figurative window cleaning...Like Felix, who became a Bishop in Madeleine L'Engle's A Severed Wasp...who told Katherine he was "a window cleaner." His call was to be a person who cleared the way for others.  I need to at least be that for myself.  I hope to be. 

4) I hope to be on the RevGals BE5 Cruise in late January/early February.  I have been signed up for months, and paid up, and at this point am totally planning on it.  There have been times in the last few months when I have doubted I would feel free to leave Ken. I hope, oh I hope, I can go.  I need it so much. 

5) and I hope so much for our world.  Just typing that brings tears.  I feel very vulnerable and horrible for the pain and suffering that are so many people's daily lives...and animals', and the planet's...I am praying to discern where my ministry is outside my home. 

Happy 2012 to all!

If I ran the zoo...

No, no, no...it's "if I were preaching"

Or maybe it's "what I need someone to preach to ME this Christmas"

Anyway.  That's what the RevGals are thinking about on this Friday, December 23: what message will they bring to their congregations this Christmastide? 

Here is what I have heard in the last week that grew into the idea really makes it Christmas for me this year. Darned if I can remember where I watched or heard or read it: 

God became a human person. Most religions' deities stay comfortably where they are, but not this God, our God, the God named I AM. 

God loved us so much that God became a human and lived and died like a human.  And you know, human life can really be awful. Especially when Jesus was born, in ways that I doubt we in the 21st century western world can really imagine.  Infant mortality, murders by dictators, rape, incest, child abuse (wait, this is from yesterday's newspaper...)

What really transfixes me on this incarnation idea is not the lovely (? ask Mary about the adjective) birth part...babies don't really remember much of that as they grow...but the not-so-lovely life and death part. 

Whether you believe that Jesus' death on the cross was God's plan, or that it was not necessarily God's plan but was still what happened (all in the name of redemption, of course) -

it was horrible. It was the worst and most painful and humiliating way to inflict suffering and death in the first century. 

In this year when my loved one has been betrayed by his body and by modern medicine so miserably (all in the name of healing, of course) - 

I see that incarnation just a little bit differently. 

I have said for years that when I see God, the first thing I am going to do is kick God in the leg, because the ways most bodies break down as we age and die seems like such a betrayal. 

Sure, I know of people who have lived happily and vigorously to age 78, and then died suddenly in their sleep. "What a great way to go." But we all know that is not the prevailing way, not in this Great Age of Medical Innovation that keeps us alive longer and longer to receive more and more exquisite tortures intended to help us.

(You see why no one is actually going to let me preach this...right?  That's why I blog). 

Here's the money line:   Jesus didn't know what was going to happen to him...but he signed up for it anyway. He accepted the job and essentially said, "okay, whatever this ends up meaning for me, I'm going to work to overturn the rotten rule by people and introduce the kingdom of God on this planet." 

In the years following Jesus' death, we have tried to carry on what he taught and planned. We seem to have gotten off track a good bit, as we fuss and stew about church schisms, resolutions and covenants. We forget about the infant mortality, murders by dictators, rape, incest, child abuse...that would likely have been of more interest to Jesus than policies and procedures and what color the paraments are this week. 

The challenge of Christmas is to think how we will live. How we will use our wild and precious lives to bring the kingdom.  And to know that whatever pain, loneliness, illness or torture we may confront and experience, Jesus knows what that's like; he's been there. 

What do I have to do, then?  For years I've been unable to watch TV commercials that show abused animals - I have to leave the room.  Same for children in poverty.  I sponsor some women and children through various agencies, but it's all very safe and comfortable, and I wonder....

And recently I read something by Pema Chodron that advised to embrace the thing you fear.  Smile at your fear.  Lean into the sharp places.  There's a lot I am afraid of.  But I'm going to take a step and see what volunteering at the animal shelter might be like.  There's a training session in January. 

I've always said that when I see Jesus, the first thing we are going to do is hug, and he's going to say, "Mary Beth!  I've been looking all over for you!" and then we will sit down and play jacks together. I do realize that the Trinity means that Jesus and God are the same person. I need to work on connecting that in my head and in my heart. No kicking.  Just loving. 

Picture found at Theology Lived website, produced by the Office for Faith and Learning at Biola University.

Thoughts from a dietitian on blenderized meals

These thoughts from a dietitian were shared on the Blenderized Diet group at Yahoo.  Email

[email protected] to learn more and ask to join. 

Hi Group

I thought I would share some info since a few of you have mentioned that
you receive some "push back" from your doctors and dietitians about home
made formula. I have just recently embarked on this trip down the
homemade formula path. This is what I would mention to your healthcare
professional:

Tube feeding formulas were hand blended for decades in hospitals and
homes. It was only the 70's when canned formula became available. This
was the age of baby formula too when being able to see and measure what
the baby got seemed so important. In the near past, the 60's, there was
no other way than blended by hand.

The Cadillac of canned formula is called "Compleat" and it is
blenderized food in a can. Its expensive. Home blenderized costs about
40% less than the standard (cheap) stuff and 10 - 20% of the high tech
formulas.

Most of the rest of the world continues to make home blenderized
formula. The big reason why canned was so immediately embraced here was
the fact that the stuff is sterilized right before canning and so it is
perceived safer for hospitals to serve. But don't kid yourself, the
real reason was to reduce labor!

Let's look at commercial stuff: corn syrup, isolated milk or soy
protein and canola oil. Let's say you go to your doctor and tell
him/her that you are going mix up these ingredients, add a
vitamin-mineral supplement and drink it every day and eat nothing else.
Does that sound healthy?

I think you guys are on to something with the healthful benefits of
homemade formula - you are pioneers, and in my research it seems there
is a movement afoot. So, I hope this helps.

Frustrated!

I'm in a blue fit. 
 

Ken turned up with what we thought was a terrible case of thrush on Oct. 29.  The difference between that and the thrush he'd had during treatment was, his tongue was and has been GREEN.  And he's been feeling horrible, like he has the flu. 

We have been to 4 doctors in the ensuing weeks, and he's been through complete courses of 4 anti-fungals of various strengths (all of which give dire warnings about potential liver damage).  We were finally told that they didn't know what to do for us, and he has to see an infectious disease specialist.  There is only one in our town, and he couldn't fit us in for 2 weeks (that's now a week from yesterday!). 

In the meantime I got frustrated and worried about the liver, and last week we went to place called "Any Lab Test Now" and had them do a culture on his tongue.  (For $126.)

Today the results came back, and guess what:  he has MRSA.  Methicillin-resistant Staphylococcus Aureus.  The thing that kills people in the hospital. 

His oncologist, when informed of these results, prescribed a week's worth of oral Levaquin ("call and let me know how that does.")  Meanwhile, a rep from the Visiting Nurse Association told me that the only way to treat MRSA is with IV Vancomycin every 12 hours. 

I am so angry...there seems to be no one who has the full picture of anything, that we can trust.  All of his doctors are like the blind men examining the elephant:  "it's like a rope, it's like a tree, it's like a wall."  Where is our big-picture person, our advocate?  Besides me?  Because I don't have all the skills and knowledge I need to do this properly.  Nor access. 

I'm enraged, thinking how much more well he could have been getting for the past month, with the proper treatment. 

Ken is feeling about ready to give up.  Of course, he's not going to; I won't let him.  But I'd like to beat the stuffing out of a few people.

(ps: not going to NYC at this time, after all.)

Turning the corner

This is the week when Ken turned the corner.

(A pause while you all jump up and down madly at home).

So, just for the record, he had:

2 full months of treatments (daily radiation and weekly chemo with a small break to be in the hospital, yuck) June 20 to August 22.

then he had:

2 months of feeling horrible and worse, from August 23 to October 16.

And then Monday of this past week the visiting nurse said, "what do you want to do?" and he said, "Ride the Rocket."

So they went outside and he rode up and down our street while she watched. We're gonna bronze that nurse.

Every day this week he has gotten better. Yesterday he drove to Aubrey with friends and picked up the motorcycle in the shop and rode it home. No, he probably wasn't ready for it, but he did it. And later in the day he rode to Krum to an auto show at the Sonic. (Could I make this up?) It was the first time he's gone anywhere (besides to doctor appointments) without me since this started. And that was good.

And this morning he reported "the best night so far" and "I feel good." I am definitely hesitant to report this because he has often felt really bad after feeling good. 2 good days in a row seems like impossible fortune.

I am still blenderizing his food and he is more than ready to start eating again, but swallowing therapy is needed first. Seems strange to have to learn to swallow again, when we were most of us born knowing instinctively how to do it. But radiation causes physiological changes, as does lack of use.

We've run into some challenges with the feeding tube for the first time this weekend (that's right, just when everything else is going so well). Nothing I can't fix. We'd both like to be done with this part. But that's ok. I still heart my VitaMix and figuring out how to do it best or right or somehow.

Last night we watched The Green Lantern on PPV. Good movie, clearly made from a comic strip. I decided that anything that Sheldon Cooper likes enough to wear on his shirt so often was worth a look.

Thanks for sticking with us. We're going to make it!!!

A Little Nutty

As in, I had one today.

The truth is out, folks: I think I am in charge, and when shown otherwise, I do not respond well.

We went in for Ken's PET scan this morning, but first I had to go to a rush meeting at work, ugh. Then, when they called him back, I was told I couldn't go with him, because the mobile unit didn't have room for me.

The last (only other) time he had one, it was in a different place. I was allowed to go back with him and sit during the injection (the part he really, really hates) and then while he sat quietly and still for 45 minutes while the radioactive glucose solution* went through his body. And then they even let me go into the room where the scanner machine was and watch his legs go forward and back as his body went back & forth in the scanner.

Today, I got up to go back when he was called and the woman said, "He'll be about 2 hours." As in, go away. I said, "Can't I go with him?" She said, no, there was no place in the mobile unit for me.

And I said, "That makes me deeply unhappy. Last time, I got to go with him." People who don't know me, don't know that my saying those words is about the same as someone else screaming the place down. She explained that in the other place, there might have been room but in this place there was not. Ken said, "I'll be fine."

Yeah, I knew he would be fine. He's not happy about injections but he can deal.

But I was NOT fine. I sat down in the waiting room and wrote a profane and angry e-mail message to a few friends, and then I left because I didn't want to cry in the waiting room. I went to Sonic for a coffee and then to a park around the corner and "had a good cry" which is usually a good thing when I am very angry.

I thought I knew how it was going to go, see, and it didn't go that way. And that was NOT okay. Oh, eventually I was fine. But it didn't take much to strip away the fiction that I am "resting in God," which I heard someone say in Sunday school this week and which has been a fine little mantra for me ever since. (Or maybe "resting" can involve having a screaming hissy fit? No? Oh well.)

A friend from work who has been having radiation treatments there for a different type of cancer came and sat with me for a while when I went back to the waiting room. She is unfailingly positive and was excited about today marking her last radiation treatment. It was a really good thing to be with her for that time.

...

Several weeks ago my counselor listened to me tell all that was going on and how I was keeping all the balls in the air, and she said, "You're doing really, really well. I'm thinking that at some point when things start to slow down for you, you may start to lose it...and we just want to be prepared for that." Uh huh. So, after all that today, I was too late to make it to my next meeting at work and had a blazing headache besides. I went home and went to bed for the rest of the afternoon.

I'm quite confident that Ken's scan will show no cancer. But the process of finding that out...is brutal. Along with everything he's gone through.

All for now. Thanks for listening.

ps: radioactive glucose solution* - you know why they use this? Because cancer EATS sugar. Cancer LOOOOOVES sugar. So in the PET scanner, the places that light up are the places where the sugar has gone...where the cancer is. Nom, nom, nom. Of course, the oncology center is all decorated for Halloween, with ... candy everywhere. I'm furious about this. Along with most other things about the modern cancer treatment industry. But that's another rant, for another day.

My Mortal Emenies

Yes, I meant to spell it like that.  It alludes to something, but I can't remember what.  "Yr. emeny."  maybe from Up The Down Staircase? 

So, in this week's Big Bang Theory, Sheldon referred to Wil Wheaton being his mortal enemy, and saying that he had a list of mortal enemies with 61 people on it.  As a nice INFP Christian, I would not readily admit that I think of anyone as an enemy, but the more I think of it the more I think of more people.  They are folks that I have something against, that I am letting "live rent-free in my head." 

I am too prudent or too chicken to put the full list online.  I'd like to think prudent is the word.  Some of them, if you know me well, you already know or can guess who some of them are.  It really doesn't matter.  But this morning I sat with Ken, who continues to be miserable.  He was in treatment for 2 months, he has been out for 2 months, he is wretched and improvement is so incremental that it's exceptionally difficult to recognize.  Certainly worse than he was before, because the cancer wasn't bothering him AT ALL. 

Very depressing.  Enemies?  I thought of these:

1. Cancer
2. Cancer TREATMENT that makes you so much sicker than you ever were
3. Doctors and other medical professionals who do not evince care
4. Doctors who did not tell us the severity and duration of treatment effects

and then, thinking of the particular doctor who is number ONE on my Emenies list, it occurred to me that I could totallly understand how someone could "go postal" and confront The Emeny with a gun or other means of making their anger and despair CLEARLY KNOWN. 

And then I burst into tears.  Obviously, just what I needed at the time. 

Note that I have no plans to go anywhere with a gun.  But I wasn't understanding just how angry I am.  A line that my friend Songbird has quoted from good old Jonah comes to mind... "Angry enough to die." 

I am not normally this forthcoming in blog posts, because my mother reads my blog and takes her role as Professional Worrier very seriously.  However, she is currently in the hospital (therefore away from computer and worry), having had spine surgery on Thursday (expected) and a seizure on Friday (unexpected, though she has a history of seizures).  I am hanging fire here, waiting to hear from my younger sister about the current situation; as Ken says, no news is probably good news. 

I guess. 

I/we are okay and will be okay.  Not least because I know some of you will read this and comment, or not, but at least will lift us up in prayer, or intent, or good thoughts.  For that I thank you.  Some days when I feel down, I feel what I call the Great Cloud of Witnesses (and you are in it, and you and you and you!) bearing me up.  I am grateful for that. 

Oh, and I really am still counting my blessings every morning.  Chief among them is that I am well and have no cancer treatments in my immediate future.  Thanks be to God.