Toenail Joy is Essential in Sickness or Pandemic

A few weeks ago, before salons were shut back down again due to COVID-19, I got a pedicure for the first time in months. Because I almost always wear closed-toe shoes, very few people get to see my neatly-trimmed peachy-pink toenails.

But I do.  

And they make me happy.

I learned the importance of toenail joy during my grueling three-year battle with cancer.

At times, I had multiple lines coming out of my body and tubes in my nose and mouth. At one point, my arms were swollen and the color of eggplant. My hands had to be restrained so I wouldn't pull out my tubes. After a brain biopsy, the quarter of my head that was shaved sported a nasty scar. Paralyzed from the waist down, I couldn’t control my feet, even to hold them upright as I lay in bed. Machines massaged my legs to prevent blood clots and my feet were attached to braces to keep them in place and prevent them from flopping to the sides.

But through it all, my toenails looked fabulous.

That made me happy.

My friend Mary came up with the idea, bringing a portable pedicure kit with her from Northern California to my hospital bedside. I remember worrying for a second that the strong nail polish aroma would annoy my roommate. (But it was only for a second, because she had been complicit in smuggling in several kittens into our room, so she had already tested the hospital roommate etiquette limits.)

Months later on a return trip to a different hospital, Mary gave me another pedicure. Because I was in a hospital bed at various facilities for four-and-a-half months unable to walk, my frame of vision was limited. I couldn’t see or do much, but I could see my toes. If they had resembled toenails a la Howard Hughes, it would have depressed me more than I already was. After months in the hospital, I learned health aides will help you with a lot, but pedicures was not on their list of services.

My peachy-pink toenails today

When I was released from the hospital to my home, I had a home nurse who was a godsend. Skilled, trustworthy and kind, she would help me with all sorts of things. When I learned she could transfer me into my wheelchair and help me into the car to take me to my doctor’s appointments, I had another idea.

Sure enough, she was able to take me to my local nail salon for periodic pedicures. I couldn’t get in the spa chairs which are part of the luxury package. I sat in my wheelchair and put my feet in a tub of water. It seemed luxurious to me.

For about a year after being released from that lengthy hospital stay, I had to return one week a month for more intensive chemotherapy. One time, a female doctor came in to check on me. She chatted with me, listened to my heart and lungs and checked my extremities. When she got to my feet, she said, “Nice color.” 

“Thanks,” I said proudly. “I always like a peachy-pink or coral.”

She looked confused.

“I was talking about the color of your feet. It shows that your circulation is good.”

I guess that was good news.

Three years after my non-Hodgkins lymphoma diagnosis, my cancer returned. I needed a bone marrow transplant.

 Ugh.

I could finally walk (with a walker), my hair had grown back and I was getting back to my new normal life when I got this news. I knew nothing about transplants and didn't know anyone who had ever had one. I learned it would entail stronger chemotherapy sessions (seven times the amount I had before), total body irradiation and a month in the hospital feeling the sickest I had ever felt.

I was given a thick booklet to explain the lengthy carefully-orchestrated process.  And I was assigned a transplant coordinator nurse to answer all my questions. 

I dutifully read through all the information. I was nervous about all of it, including the description of the hospital stay, the restricted diet while in and out of the hospital and a no -contact-with-pets rule. But if it meant saving my life (and it did), it was necessary. But there was one requirement that annoyed me.

Nail polish was prohibited. 

When my transplant coordinator called on the phone to answer any questions I might have, I asked her about the nail polish rule. Even on toes? 

Yes, she explained. Doctors could tell a lot about your health by looking at your nails.

What about clear nail polish? I asked.

Well, she said. That would be OK.

So during my transplant, I lost every hair on my body, I had excruciating mouth sores that made it nearly impossible to eat and I had an allergic reaction to an intravenous antibiotic that created itchy red welts all over my swollen face and body (my Jabba the Hutt phase). I was too weak to read or focus on a TV show. I threw up many, many times, and I became crazed and hallucinatory after frantically pushing the button of my self-administered morphine pump. 

But my toenails looked fabulous.

And that made me happy.

Also, the transplant -- almost 12 years ago -- saved my life.

That makes me very happy.

  

My Walker is an Open Invitation to Interrupt Me

When I was in grade school, there was a popular prank that involved putting a “Kick me” sign on someone’s back. You would cheerfully greet the person with a pat on the back, and surreptitiously stick on a piece of paper with the handwritten words and hope it would stay on for hours.

Hilarity would ensue.

These days, I feel like my walker serves as my personal “Kick me” sign, an invitation that says: 

“Hey, why don’t you stop this disabled stranger (or get in her way) and ask her questions, quiz her about her walker, tell her about your mother, grandfather, aunt, uncle, etc. who has a walker/cane/wheelchair, ask what is wrong with her, tell her all your health problems or those of your mother, grandfather, aunt, uncle, etc?”

That has to be the reason why complete strangers, when they see me using my walker, feel compelled to approach me. And comment. Or holler.

And in one case, almost knock me over.

I didn’t experience any of this when I used a wheelchair, but I’ve been using a walker for more than 10 years now and it’s been an endless stream of uninvited interactions. Because I have limited mobility, I can’t just walk away quickly or pretend like I didn’t hear them. So I am drawn into many conversations.

And because I am very, very nice, I will patiently answer their questions or listen to their stories, even when I just want to go from point A to point B and not necessarily have a long chat.

I have used a walker for about 14 years, ever since cancer ravaged my brain and abilities. My rare type of non-Hodgkins lymphoma is gone. (Woo hoo!) But the disability remains.

And I have a fleet of walkers  of various types to help me walk. Each has its own function. There’s one I use indoors at home, another outdoors at home and still another awaits me when I go upstairs. There’s one I use in my exercise class and a lightweight one that folds up and is easy to put in my shopping cart. There’s a different lightweight one that I use when walking longer stretches and there’s the tri-wheeled one I used for long distances or uneven terrain. There is another one which incorporates a seat but it is too bulky to take in the car and doesn't really work for someone like me who cannot balance by myself. 

I am always in search of the perfect walker. I’ve even advised two different college students who wanted to design one as part of their studies. But alas, I haven’t yet heard of The Perfect One. (Some of my criteria: lightweight but sturdy, foldable and portable, wheels that swivel, brakes that work, a fashionable look and affordable.)

Others are apparently on the hunt as well.

“Well, look at that!” they will say. “That’s different. I’ve never seen one of those! Maybe mom (etc. etc.) would like one of those. Let me have a look at it.” 

These comments are usually when I am either using one of my lightweight walkers or my tri-wheeled one. They fold up narrow while I am walking, which comes in handy when squeezing between tables in restaurants or aisles in stores. I am happy to share information about the type of walkers they are. But often my patience is tested. 

I was using one of my lightweight walkers one day as I passed by a woman waiting in the courtesy area at the drug store pharmacy, behind the line so you don’t overhear the other customer’s business. I was just passing by, not in line for the pharmacist, when the lady exclaimed over my walker, came over and tried to yank it from me.

“Well that’s a nice one!” she said, and with both hands grabbed the handles of my walker, trying to take it for an immediate test drive.

I held on for dear life, saying, “I need this to walk! You can’t just take my walker away!”

Another time, I was in a nail salon waiting area and another lady — intrigued by my walker — told me about her mother who uses a mobility aid. She asked if she could take it for a test walk.

Yes, I said, because I was sitting down and didn’t need it. She wandered around the salon for a bit and returned it.

I have answered questions about the brand, where I got it, how much it cost, and my illness. I don’t mind as long as you are polite about it and the question doesn’t stretch into a long conversation.  I was on a sidewalk in Palm Desert on a mini-vacation when a woman walked up to me and loudly said: “Hip or knee?” 

“Pardon me?” I said. 

She repeated “Hip or knee? Which operation did you have?”

“Neither,” I said. “Brain cancer.” 

(And top of the morning to you, too, I wanted to say.)

Then, she stopped and told me her hip or knee and walker story and I told her a brief version of mine.

I’ve experienced some commenters who are brief and to the point, and some who are a bit rude like she was. No time for chit chat, they just want me to answer the questions of where I got my walker and what is wrong with me.

I was just sitting down in a darkened movie theater recently when a voice barked “Temporary?” My husband looked around to see a woman sitting alone in an aisle behind us. “Are you talking to us?”

“Yes, is that walker temporary or permanent?” 

“Permanent,” my husband and I both answered.

“Well, have you seen the walkers that are upright with the high handles. My sister uses one of those and she really likes it……yada yada yada………”

I told her I had checked those out and they were too heavy for me to use in my car and too expensive. And, I wanted to say, can I just get ready to watch the movie?

Then there are folks who see me and tell longer stories. One time I was at car wash, sitting on the bench waiting for the signal my vehicle was ready. A guy next to me struck up a conversation about disabilities in general… and how he is a minister of some sort and they have a lot of disabled people come to the services…..yada yada yada. And on and on. 

Another time I was at a concert and was heading to the restroom during a break and a man came up to me and said his wife used a walker, too, after surgery and she’s sitting over there….yada yada yada…Did I mention I was on my way to the restroom? And didn’t have extra time to chat? 

After show, he met up with me again in the line to buy merchandise from the band. And his wife was there so I got to meet her and hear about her prior surgeries and another upcoming one and…yada yada yada… until somebody protested that we were holding up the line. 

Some days, I just want to make a clean getaway. On a hot day a few weeks ago, I had left my local Walgreen’s and was in the driver’s seat of my car folding up my walker to put it inside when I heard a loud voice. “I’ve been there!” A woman was heading my way, came over to the driver's side, said she used a walker for a while when she had some sort of operation or injury. And she proceeded to fire questions at me:

"Why do you use the walker?"

Cancer.

"What kind of cancer?"

Non-hodgkin's lymphoma. Mostly in my brain.

"Where do you live?"

Here in Castaic.

"Where in Castaic?"

Thinking does she want my address?, I gave her the general neighborhood where I live.

"I’m pretty sure it’s the water. Everything here has been poisoned from munitions plants."

Well, I got sick right after I moved here, so don’t think it’s from that.

"You should check it out. The water tables have been poisoned.

Who is your doctor?"

He’s from UCLA.

"Hmmm."

Ok, I kinda gotta go.

"Have you heard of_____?"

No.

"Well, it’s when you walk in nature and commune with the earth and the spirits. I live in (a mountainous area about 20 miles away) and go on them all the time and I will pray for you next time I’m on one."

OK. Thank you… I kinda gotta go.

All of these people are well-meaning. But imagine if you were interrupted all the time when you are just trying to get around and do your shopping, get your nails done, get in your car or watch a movie. These meddlers are lucky I’m so nice.

Saying Goodbye to My Hospital Bed Feels Good

I feel like a little kid graduating from a crib to a big girl bed.

After 12-and-a-half years of sleeping in a hospital bed in our family room, I have moved on. To a regular bed in an actual bedroom.

I am elated and proud. And a tiny bit wary.

The hospital bed has been disassembled and soon will be picked up by trash collectors. Taking its place are a couple of new couches -- replacing the sectional we owned for nearly 30 years.

It’s a big win for the world of home decorating and for me. I’ve been sleeping in the out-in-the-open bed for a long, long time.

When I first got sick in 2005, doctors were unable to diagnose me for months. They suspected I had cancer, but they couldn’t find the specific cells (after numerous scans and blood tests, a splenectomy, grueling bone marrow biopsies and spinal taps). Meanwhile, I got sicker and sicker, lost more and more neurological function. I lost my speech, the sight in one eye and the use of one, then the other leg.

So I was in my home hospital bed months before I was hospitalized. I was too weak to climb the stairs to my bedroom.

The bed has been my home for more than sleeping for years. I am cancer-free (YAY!), but the non-Hodgkins lymphoma (eventually located after a brain biopsy) has left me disabled and weak and in nearly constant pain. Multiple compression fractures in my back make it impossible for me to sit up, walk or stand for long periods of time.

The only thing that makes the pain go away is to lie down flat. I would use my hospital bed many, many times a day for this. And for the occasional nap.

 A few years ago, a friend took a fall and broke her ankle. While recovering, she could not go back to her condominium because it required going up stairs. She was looking for a place to stay after spending time in a convalescent facility, but she hesitated about asking friends to use their home. “It’s not like they can put a hospital bed in their living room.”

Yes, I told her. They can.

Well-worn Bunny on my in-home hospital bed

On one hand, it was embarrassing to have a hospital bed in our family room. Other times, it was a godsend. I learned to get over the embarrassment, as I had to do to with other aspects of my sickness. 

When I first got out of the hospital after spending 4-and-half-months in institutions’ hospital beds, it was wonderful to have one at home. My own sheets, my own TV, a button to raise the head or foot of the bed, railings to prevent me from falling out and to help me sit up.

In those early months, my home nurse and my family caregivers used it as leverage to lift me into a wheelchair or a commode, and as a place to bathe and feed me. My physical therapist used it as a beginning site for my exercises, slowly getting my muscles to work again.

It was my anchor for celebrations. My husband, so happy I was home after many months away, threw a neighborhood party for me in June 2006. I was thin, weak, barely hungry and horizontal for most of the evening, but I loved seeing so many people. I was ecstatic I was home. 

On my 50th birthday that same year, dear friends and family came to help celebrate my milestone. I managed to open presents, cut the cake (and eat it, too) while in bed.

At smaller get-togethers over the years, I would try to sit up and be sociable, but would have to lie flat after awhile, so I wouldn’t be in pain. As I gradually gained strength, the home nurse and physical therapist quit visiting. More than a year of intense chemotherapy, involving a week in the hospital and three at home, made me appreciate the ease of sleeping and recovering in the bed. Then, when the cancer returned and I underwent a bone marrow transplant, the bed helped as I again slowly regained my strength.

Later, the bed proved invaluable for my two separate carpal tunnel surgeries and months of recovery when I couldn’t use my hand to grip my walker. The button to raise myself up helped lift me to use my walker with a special elbow-steering attachment. 

But there were downsides to sleeping in an open room all the time. Every time someone came to the lower level of our home late at night or early in the morning, I was awakened.

And the two cats we had over the years considered me part of the furniture. Day or night first Allie (RIP) and then Albert would jump onto the covers, snuggle up at or on my  feet, or sit on my chest and breathe in my face or give me a quick couple of licks to make sure I was awake.

When my bed’s motor finally gave out a few months ago, it was stuck in the nearly-flat position.  This was a great angle for my back, but bad for getting up or seeing the TV, particularly with Albert on my chest. Medical equipment companies said they would not repair it but would replace it. At a cost of about $2,000 with insurance, I declined. (When the bed was first sent it to me, it was on a rental basis. After a year or so, it was declared ours. We never paid a cent for it, because our medical bills routinely exceeded the maximum insurance limits.)

We instead decided to buy a sofa set that was easier to get in and out of than our previous one. And I could use a relocated lower bed in the adjoining room to sleep. (I couldn’t get in the previous one due to its height -- and the fact that steroids use during my sickness left me with osteoporosis and 2-and-a-half inches shorter.)

New furniture!

Bunny -- my cancer buddy who was a fixture on the hospital bed -- found a new home in the regular bed in the bedroom. 

This new arrangement is working out fine. I’m definitely getting more sleep, uninterrupted. I’m adapting with a bit of difficulty to not having the bars on the side -- which I depended on to get up or turn in bed. And I’ve moved my rolling tray table -- which at times was piled high with medications or supplies -- into the downstairs bedroom so the area looks less like a MASH unit. I lie down on the new love seat when I need some flat time or move to the bedroom for long spells of back relief. 

Our family room looks like a family room, for the first time in more than a dozen years. But I’ve learned that a family room isn’t just what’s pictured in furniture ads. It’s the good, bad and the ugly things that happen there. It’s life and how you adapt to it.

Goodbye, hospital bed. I could not have done it without you.

These Are a Few of My Favorite Things Because They Make My Disabled Life Easier

‘Tis the season to be thankful.

I’m thankful, as always, for my life, family and friends. But there are lots of other things -- innovations, products and services --  that I am grateful for on a regular basis. Each of these has made my new life (can I call it new if it’s been more than 10 years?) as a disabled person much easier.

1)  Downey Anti-Wrinkle Spray

One of my favorite inventions of recent history, this has been a godsend. I remember using it as far back as 2002, before cancer left me disabled, unable to walk up the stairs of my home or balance well enough to iron something.

I first picked it up as an easy way to spray away the wrinkles in clothes without having to haul out the ironing board and set it up. It was genius: you just spray the clothes, smooth it out a bit, then let it dry. Voila!

When I tucked a bottle in my suitcase for a trip to London, it turned out to be invaluable. Traveling in a group of five women with limited knowledge of hotel room amenities or outlet compatibility, my miracle spray came in super-handy. I left it with a friend who was studying in England. Downey spray hadn’t yet hit the stores there. It took a while for it to be widely available here, but now you can find the product (or an imitator) easily at grocery or drug stores. It even comes in travel sizes. 

After lymphoma left me permanently disabled and requiring a walker, the spray has become a favorite product in my home. I can’t climb the stairs to do laundry or fluff up items in my dryer, but I can easily spray clothing items while they hang on my bathroom towel rack and leave them to de-wrinkle overnight.

2) Dream Dinners 

This company has franchises in 24 states and is a “make-it-yourself” meal mecca. Again, I first discovered Dream Dinners before I got sick. It was an easy, fun way to assemble delicious meals -- with my friend or daughter in tow -- in advance to have several pre-prepared selections to choose from. When I was diagnosed with lymphoma and was essentially unable to help in the cooking at my house, my friends and relatives sent me gift cards to my Dream Dinners. For a small fee, you could order them assembled and then anyone could pick them up, bring them home and follow directions to make an easy, nutritious meal. It was more affordable and healthier than having to rely on fast food. 

More than 11 years after my cancer diagnosis and eight years after my bone marrow transplant, I still am a Dream Dinners loyal customer. If I order regularly, the assembly fee costs nothing and I just pick up many meals for the month directly from the store and put them in my freezer. It still takes some work in the kitchen to cook a meal, but thankfully I can do more of that now. I still avoid the planning, shopping, chopping, and measuring. For someone who can’t stand long or balance well, it’s a lifesaver. 

3) Mimi’s Cafe’s take-out holiday feasts

Once I discovered Mimi’s Cafe’s Thanksgiving dinner, it’s been hard to imagine the annual holiday without it. For (this year) about $90, the Mimi’s to-go meal feeds 8-10, is well-packaged, easy to heat up and delicious. You still need helpers at home to get it to the table.

Here’s the rundown of what’s in the Thanksgiving feast: 1 whole herb butter basted turkey, 2.5 lbs of buttered cornbread stuffing, 2 lbs of candied pecan sweet potatoes, 3 lbs of whipped mashed potatoes, 2.5 lbs of green bean casserole, 12 oz. of apple cranberry orange relish, 32 oz. of turkey gravy, 2 carrot nut loaves and 1 whole brown sugar pumpkin pie. 

The restaurant also offers similar dinners for other holidays.

If you just want an easy-to-make meal with plenty of leftovers, it’s worth checking out. But if -- like me -- you are disabled or not able to operate like you once did in the kitchen, it’s a gift. 

4) Banking on my smartphone

I love being able to deposit checks on my iPhone.

In the olden days, you used to have to bring a check with you to the bank, take it to a teller, fill out a deposit slip and stand there while it was deposited to your account. Sometimes you would have to show ID, if the teller didn’t recognize you. 

Then progress and technology allowed people to deposit checks by using a pneumatic tube at the drive-though window. You could chat with the teller at the window via a microphone. In time, the tubes and employees were replaced by ATMs: both walk-up and drive-through versions.

This is all well and good, but not really ideal for disabled customers like me. It’s a pain to get out of the car and use a walk-up ATM. Making a deposit requires balance to insert the check or cash.  I feel vulnerable, practically advertising while making a monetary transaction that I am not able to walk without assistance. Or run after any robber. 

Even at the drive-though ATMs, I have difficulties. At some terminals, my arm isn’t long enough and I can’t get close enough. The height of the buttons aren’t quite right. I have to open my door, put one leg out (if it will fit between my car and the curb) and turn and really stretch to insert my card, plug in my numbers, deposit checks and/or retrieve cash and get the receipt. Then I strain to free my leg, place it back in the car, put on my seat-belt, etc.  This is all time-consuming, which folks in cars behind me do not appreciate. (Yeah, that’s me also holding up the line at drive-through car washes, postal mailboxes and pharmacies, drop-off library book containers and ticket-issuing parking garages.) 

Once I got my smartphone and downloaded my bank’s app, my banking life became easier. Following step-by-step instructions even I can understand, I can deposit a check without leaving my house. I can also transfer money and pay bills. I still have concerns about getting cash out of an ATM (someone could grab my money and sprint away in a flash), but thankfully there’s an alternative to that. 

5) The cash-back feature when using a debit card at the grocery store

Woo hoo.