Terrapin Station

Shifting Sands

On Christ the solid rock I stand

all other ground is shifting sand

all other ground is shifting sand

***

So, when I was first married I had a kid at home, and I enjoyed it and did a lot of mom type things. 

And then I had an older teenager, and it wasn't as much fun on a reliable basis, in fact it was pretty bad sometimes, and was I really surprised? 

And now the kid is 23 (shazam!) and lives on his own, and works and pays his own bills and I am glad for him and proud of him.

That's the way you expect that story to go, essentially.  There are bobbles in the middle sometimes.  The end doesn't come out quite like you think it will, but it comes out. 

For some people, it doesn't come out.  Their son dies or gets sick.  But for me, it worked out ESSENTIALLY the way I planned.

***

When I was first married, I managed my husband's business (not my best assignment)

We went out dancing a lot. We were 12 years younger.

Last year, Ken got sick. We got through it. I learned how to be a caregiver for a throat cancer patient and I learned a lot of things. 

He started getting well. It was (is) slow but GREAT.  But slow. 

But, I am not sure how to stop being a caregiver and start being a spouse again.

I struggle with this. 

Just when I think I am getting there, he gets very sick again with an abdominal complaint, and we are in the hospital for a week plus. 

We learn that it's a bad case of food poisoning. Relief!  he is getting better now. 

But I still can't let go of the caregiving. It's as if I totally fell off of a big Caregiver Recovery wagon somewhere. 

How will this work out?  I DON'T GET TO KNOW.  Darn it.

***

Years ago a priest friend quoted CS Lewis roughly thus:  "you'd better not ever love anyone more than Jesus, Mary Beth, because Jesus is the only thing that'll never change."  Yeah. 

 

 

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!

Items of Christmas Eve (and the eve of it)

Night before Christmas, we go to bed early. Ken wakes up ~10 spiking a fever, over 100 degrees, very high for him. Alka Seltzer, rubbing alcohol, panic. Fever comes down within an hour. Wake up all night to take his temp with the forehead thermometer (such an invention). Not much sleep. Do not know why this happened.

Also in the night: dog barks like maniac, indicating unwelcome small visitor in kitchen. Ken deliriously constructs a Maginot Line of household items in doorways to prevent dogs from getting into kitchen. Visitors are welcome to do as they wish this night, but dogs MUST. STOP. BARKING.

He didn't get a lot of sleep either and snoozes past noon. Wakes up ready for Christmas with Brandon. We go to IHOP for the classic family meal.

The three of us go shopping at Tractor Supply, cause that's how we roll. Visitor removal supplies obtained.

Come home, nap. Wake up feeling like I've poked myself in the eye, and with a mouth full of ulcers. Stress much?

Dog barks like maniac: visitor spotted. Ken sets up the supplies purchased for him. I feel a great relief that I am no longer the only person in the house doing this sort of thing. Welcome back to mousetrapping, sweetie!

Soon: leave for church. Because my mouth hurts but my heart is glad. :) Merry merry to you all!

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.

Strange...

So, as I said, Ken turned the corner 2 weeks ago, and today he plumb left the street behind. This, despite feeling pretty crummy for the last 3 days.  Determination - he haz it. 

He headed to Burleson on the motorcycle this morning - there he met 2 friends and they loaded up all 3 bikes on a trailer and went to Galveston.  They will be checking in at the beach house sometime in the next couple of hours, and I'll drive down and meet them there on Thursday.  (There are a lot of other people staying there, too, not just the 4 of us). 

It was the queerest feeling to see him ride away; this is only the second time he has left on his own since about week 2 of treatment.  I sent him with lots of blenderized, frozen food and other equipment.  I hope all will go well while we are apart (like, that he remembers to eat!) 

For a couple that has always spent a lot of time apart, we have been together pretty much 24/7 for the last few months. 

Then, another queer feeling when I went home for lunch and no one was there!  An empty house; something else I used to be accustomed to and am not right now.  It'll be okay.  Tonight I plan to do a massive clean and tidy-up in the front room (where we've essentially been living).  Nice. 

Really looking forward to spending some time

1) together

2) with friends

3) at the beach

4) anywhere but in our house!!!!

Woot! 

 

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!!!

Gratitudes

...because it's been that kind of a day...

My computer at work now has Windows 7 and Office 10 on it.  I will love these programs once I figure out where they've put everything!

Weather nice, a little warm but I'll take it over 105. 

Ken feeling pretty good when I went home midday.

I rolled my chair over the end of my phone's power cord, ruining it.  But I have an extra at home.  :) 

I'm going to Jazzercise this afternoon (if I say it here I HAVE to go)

Tomorrow's the first day of my caregivers' support group at the university Psych clinic.

My parents' joint birthday party is next weekend (8th October).  Dad will be 86, Mom will be 80. 

The instructed Eucharist was awesome on Sunday.

It's almost the end of the month!

I love playing Words with Friends and Hanging with Friends on my phone. 

I have HAD IT with Gardens of Time on Facebook. 

tonight: I sweep floors.