On a Clear Day…

Years ago, there was a Latin teacher where I taught whose eyeliner lined everything but her eyes. It switchbacked and zigzagged like Bill Clinton’s polygraph test. Looking at her, I’d wonder, is her mirror broken? Can’t she see she looks like Tammy Faye Baker after a car wreck?

I had to wait thirty years to get an answer. No, she couldn’t see. And I know that now because I peered into a magnifying mirror the other day and confronted the same cosmetic disaster on my face.
What on earth was causing this?

Simultaneous to the makeup enlightment, I noticed that when I walked into a Walmart, the world looked as if I were viewing it from the bottom of a swimming pool. The aisle signs were too blurry to read. The floor seemed to be moving. I’d reach for a can and close my hand on empty air.

The situation at the house wasn’t much different. I often got frustrated looking for things that were right in front of my face. I couldn’t sew on a button because I couldn’t see a needle, let alone thread it. I couldn’t read the crawler on the TV screen. I had to step up close to the channel guide to read it on a 42” screen. Walking downstairs was embarrassing because the stairs seemed to move and I often misstepped when I couldn’t tell exactly where to put my foot.

The most frustrating moment came when I plugged in the charger to my DSL camera. The next day when I went to unplug it, the charger was gone. Vanished into the night. Pirated away by spirits? And my camera was worthless until I either found the charger and battery or ordered a new one.
In the meantime, I did my annual eye exam. This time the report was quite different from the usual “You’re precataract” assessment. What is precataract anyway? Aren’t we all precataract? Isn’t that like being pre-dead?

I needed cataract surgery, immediately, proclaimed the eye doctor. My always close to the surface fear of someone cutting on my eyes sprang to the top instantaneously. Would surgery hurt? Would I see the knife as it came toward my eye? What if I blinked or sneezed at the wrong time? What if he was careless or overconfident? What if the tectonic plates below Rogers shifted at that precise moment?

It was all a moot point. I couldn’t see anymore and I knew it. So what’s blindness when you’re awfully close to it anyway. Besides, I’d have one eye left for finding my cane.

In retrospect, cataract surgery is a “cake walk.” Probably the easiest medical or dental treatment I’ve ever done, with the most life altering results.

An IV drip of semi conscious sedation made me not give a rat’s patoutie what was happening to my eye. I saw the instrument, I saw blurred movement, then the light cleared and my eye closed. Could it be simpler than that?

And when I got home, I took off the dark glasses, turned on the TV, and experienced what seemed a miracle. I read the news crawler at the bottom of the screen w/out my glasses. When I looked about the room, the light was blue white, not yellow brown. And oh my God, when I looked in the mirror, I saw that my eye shadow was a silly teenage girl pink, not the sophisticated smoky peach I’d thought I was wearing.

Even now, two weeks later, I am in awe of the colors around me, the vibrancy of light, how the water shimmers when the sun hits it, how white my cat’s fur is, how burnt orange the sunset is, how it isn’t excruciatingly painful to watch the sun come up. I can’t wait for the second cataract surgery. I will see the world again as God made it, not as if I were looking up from bottom of a murky pool on a cloudy day.

Oh, and my camera charger? It seems when I cleaned up my kitchen, pre-surgery, I forgot I’d plugged in the charger. In my near blindness, I mistook its black boxy shape for the power element to my electric skillet. Later when I pulled out the skillet to fry some pork chops, my camera charger and battery were resting inside, right next to the real skillet power unit. So much for my mother’s advice to put things back where you found them. Hard to do when you can’t tell what the things really are.

A Shift in Direction

You can only work this cancer survivor bit for so long. Eventually one of two things will occur: you’ll die or you’ll run out of posts worth reading. I think I’ve hit the latter of these milestones. And since it’s my blog, I’m going to change the direction to things I care about now. Or things I think you might care to know about tube feeding and other annoyances of old age. In honor of that new commitment, I’m submitting my first post on my most recent fear: cataract surgery. Hope you enjoy. I’ll continue posting tips about tube feeding as I run across them.

A Tip for Cleaning the Feeding Tube

I don’t know how it is w your enteral supplies, but my replacement button and tube are very costly. Considering the entire thing consists of plastic and a small balloon, I can’t understand why it costs so much. To avoid frequent replacement, I keep the tube and the button in clean working order, always rinsing it immediately after use and regularly cleaning it w warm water and soap.
All the same time, Jevity is some thick stuff and it likes to stick to the tube. I’ve tried cleaning the tube w a Qtip, not long enough, and running a wire down it, risky because it may puncture the tube and leave me needing a new one. I’ve always got a backup tube in the closet, but who wants to puncture a perfectly good tube just trying to clean it.
The other day it dawned on me. Try a pipe cleaner. I had a bag full from a craft’s project.
It worked wonderfully. The tube is perfectly clean inside now and looks like it’s never been used.
You can find these pipe cleaners (12″ long), which are longer than regular cleaners, at Michael’s or Hobby Lobby. About twenty-five to a bag for about $2. They are so handy for getting the Jevity that soap and water just can’t seem to dislodge.
Give these fuzzy sticks a try. They are very efficient at dislodging that pesky residue.

Free Cleaning for Chemo Patients

This is such a wonderful support idea. If you can’t use it, and I sure hope you can’t, pass it on to someone who can.
Cleaning for a Reason

If you know any woman currently undergoing Chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning – 1 time per month for 4 months while she is in treatment.

All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service.

http://www.cleaningforareason.org

Please pass this information on to bless a woman going through Breast Cancer treatment. This organization serves the entire USA
and currently has 547 partners to help these women. It’s our job to pass the word and let them know that there are people out there
that care. Be a blessing to someone and pass this informatio n along.

Chocolate Dessert Recipe for Tube Feeders

If you are tube feeder craving something tasty, try this marvelous recipe my sister came up w for a chocolate dessert you can enjoy with your whole family. It’s made with tofu, melts in your mouth, is good for you, and tastes amazing. Healthy stuff for your family and some taste and texture for your sensation starved tastebuds. Enjoy.
ofu Chocolate Pudding

1/3 cup of 4-serving pkg. instant chocolate pudding (reserve the rest to add in the blender)
1/2 cup 2% milk
1/2 teaspoon vanilla
1/4 teaspoon ground cinnamon
7 oz. Firm Tofu, drained, cut into 4 to 6 cubes (doesn’t matter if they are equal in size)
1 TBS 2% milk
1/2 cup light cool whip (thawed)

Mix first 4 ingredients in bowl with hand mixer until well blended. Place tofu pieces and 1 TBS 2% milk in blender. Add pudding mixture. Blend on liquify until the mixture is fairly smooth. Add reserved dry pudding mix and blend on on liquify until mixture is smooth and creamy. (Mixture will be slightly runny.) Transfer to bowl and blend in cool whip by hand. Chill for about 1 hour until set.

More Traveling with Your Feeding Tube

I’ve combined two steps for traveling together on this post. My other recommendations are broken down into three previous posts.
This is so crucial I probably should have begun with this post. Take a note from your doctor on official stationary or Rx form verifying you are a tube feeder. The enteral system looks like a bomb fuse as you pass through an xray. Don’t get yourself strip searched because your “picture” looks weird. My doctor’s note helped me get through the Las Vegas airport and allowed me to take my water on the plane with me. TSA employees will love you when you hand them that doctor’s note.

Your final step before traveling: packing the “feed bag.” If you’re an experienced tube feeder, you already know how to do this. But if you’re new, there are certain must have’s for the feed bag. Pack soft, absorbent towels. The flour sack towels from Sam’s are perfect. Soft, very absorbent, light weight. Pack about three of four of these. Throw in a plastic glass to put your Jevity, Ensure, etc. in. Pack two syringes. The extra is insurance that the first always works. Grab a handful of rayon sponges. Don’t forget the tube itself, if you are using a Mickey button. A couple of cans of food. A bottle of water for flushing your tube, button, and rinsing out the glass. Do this religiously. You don’t want your tube, syringe, or button getting clogged while you’re traveling.
A quick caution about your bottle of water. When you pass through airport security, they may confiscate it. If possible, make sure the bottle has an unbroken seal. But if they snatch it up anyway, you can always buy additional water on the plane if you feel the need to eat in flight. Good luck finding a place to do this.
So why bother with all this gear if you can’t use it anyway? Because you’re going to appreciate it the minute you leave the airport. And your food is immediately accessible instead of rummaging through your luggage to find it. Besides, if you get stranded or you flight gets delayed, your food is with you.

Would I go overseas as a tube feeder? Perhaps if I were young, adventurous, and traveling with a spouse or friends who understand my limitations. Still, the restrictions of tube feeding would make me hesitate a long minute before I committed to an overseas ticket. The issues of time and privacy are big ones for me. But if they’re not issues for you, Bon Voyage. Send me some pics to post in the comment section.

Traveling With Your Feeding Tube, More Advice

More travel advice for the tube feeder
What do you absolutely have to have before you can leave home? A travel bag, a back up tube system, and note from you doctor. Let’s deal with the back up system first.
Stuff happens at the most inopportune times. It’s a rule of life. Plastic becomes brittle. Valve covers break. Tubes get clogged. We’re not talking about your car, though it sounds like it. What do you do if you’re in Italy and your tube balloon deflates and won’t reinflate? That’s why you need a backup system. You don’t want to head into an Italian emergency room hoping they have an enteral feeding system available for instant installation. Imagine how long you’re going to wait in the Italian ER while they document your insurance. And then you may discover they don’t have a matching enteral system. Your friends are really PO’ed for all the travel they lost sitting with you, and you’re going to be homebound on the next plane anyway. Because you can’t eat w/out a tube system.
Prevent that by ordering an extra system. It will fit in the bottom of your suitcase. And it’s insurance that your tube stays trouble free. I’ve never needed my backup system…because it’s always with me.
You also need plenty of syringes and rayon sponges. Lots of sponges. Cobblestone streets, jerky taxi rides, bumpy bus outings, they’re all going to irritate your tube area, and you’ll be grateful for the soft comfort of the rayon sponges. Change them frequently. And take a little Neosporin, just in case.

If you ignored my previous post and bought a dream flight ticket anyway, good for you. But, as it gets closer to departure day, you’d better answer some questions to avoid disaster later. Will your food travel with you? At a minimum of five cans a day, more if you’re walking around being touristy, you’ll need thirty five cans of Jevity per week. Have you picked up thirty five cans? They are HEAVY. Are you going to pay to have them shipped to your destination? If you’re flying in the US, your nutrition provider can ship to a different address so it’s there when you arrive. But how are you going to move all that food if you change locations during your trip?
Shipping it overseas is even a bigger challenge. You’ll pay a veritable fortune with no guaranteed your food won’t get lost or delayed. You can’t declare yourself on a serendipitous diet and just lose a few pounds. You’ll be in the hospital after two days. Perhaps you can substitute a powdered food, carry it with you and mix it when you arrive. Or confirm the availability of Ensure in the country you’re traveling to. If either of those options is workable, then I say, “Buy that ticket to Finland or St Petersburg, or Florence. But take a few more precautions before you leave.”
I’ll deal with those in the next post.

Come Fly w Me and My Feeding Tube

The following posts will deal with travel advice for tube feeders for both domestic and overseas flights. The posts were prompted by a reader who asked this question: can my friend fly to Italy after having a feeding tube inserted. And can she go just two to three weeks after surgery? Her doctors say if she’s going to Italy she must do it now …or never. Can she do it? What are some of the problems involved?
I didn’t want to answer this because my answer would be a dream smasher. Besides, if her doctors aren’t concerned, should I be?
Doctors don’t educate you carefully on the how to’s of tube feeding, not because they’re busy or don’t care. But because they haven’t experienced the challenges. But, in the last two years, I have learned some tricks that make traveling with a tube much easier.
Are these tricks enough to insure a successful overseas trip? I’ll let you decide as you read my tips.
First, the privacy demands of tube feeding limit how long you can fly. Tube feeding necessitates lifting your shirt or unbuttoning your blouse to plug in the tube. Once connected, you can drop the shirt and discretely feed yourself. However, a passerby can easily see the tube dangling from under your shirt. They also see your thumb pushing the syringe. You look like you’re pumping drugs directly into your stomach.
Even a short flight for the tube feeder is problematic. The early check in time means you’re adding at least an hour to your flight on the front end, and picking up your bags after landing adds even more time on the back end. So if your flight is two hours, you’d better figure on at least four to five hours of public time. A tube feeder will be running on fumes by then. And being hungry is so different for you. Your stomach doesn’t just rumble. Your whole body shuts down: foggy thinking, weakness, apathy, confusion, crankiness.
For short flights you can prevent those symptoms by eating two cans before entering the airport. But longer flights are still a challenge. Once you enter security, you’re done eating til you come out at the other end. So double your food intake before entering. I am wondering if you’ve declare yourself handicapped when you buy your ticket, will the airlines provide a place for you to eat, either on flight or in the airport.
If they don’t, you’re relegated to the public bathroom, and nothing is more disgusting than eating in a bathroom, any bathroom. Imagine drinking an uncovered milkshake in a toilet stall. The single time I was forced to eat in an airport bathroom stall, I visualized every particle floating in the air landing in my glass of Jevity. Avoid that nauseating experience by planning ahead.
Tomorrow’s post will cover Advance planning for getting your food to where you’re going.

Caringbridge.org A compassionate use of technology

It’s said that every evil produces a good, that every action has an equal and opposite reaction. Certainly my discovery of Caring Bridge is not equal to the death of my former student, but it is a good thing to come from that tragic loss. Because www.Caringbridge.org connects families and friends, both close and distant, to a person they care dearly about, Caringbridge is an imcomparably good technological development.
Sadly I discovered Caringbridge when I logged onto Facebook where I found a message from a former student notifying everyone on the Texas High list of the critical condition of ex-student Judge Jim Hudson of Texarkana, Ark. I immediately created a Caringbridge account and was able to read each entry from the time Jim developed sepsis from an abdominal surgery until the sad news posted by Jim’s family of his passing. I was also able to post a message to Jim, whom I’d lost contact with over the years.
I am no expert on the possibilities within the Caringbridge site, but I can certainly see where it will be useful to my family and friends one day when I am facing a recurrence of cancer or whenever death presents himself in the guise of a different illness or physical shutdown.
And I want each of you who reads this post to bookmark Caringbridge.org because Caringbridge offers the triple benefit of keeping you abreast of health news on those you love, giving you a place to send messages directly to the caregivers and family, and reuniting you with lost friends in the a sort of “six degrees of separation” experience.
Add Caringbridge.org to your favorites for when you need it later. It’s the best of compassion and technology combined.