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.

  

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.

In Sickness and in Health, Cancer and Disability, Allie the Cat Was By My Side

We adopted Allie when she was about a year old on rescue day at a PetSmart. She had recently given birth to five kittens, which were snapped up right away. She looked kind of sad, like a mother would look if her babies had been taken from her and she was in a cage being sized up by customers. But she was adorable, a calico cat who needed a home.

My husband spotted her as a viable addition to our family. We were looking for a slightly older cat. Our last cat was completely nuts when we got her as a kitten. She lived a short, dangerous life, breaking a tiny hip jumping down from our backyard fence (so much for the "cats always land on their feet safely” myth) and running away one day only to meet her demise at the cruel hands (claws?) of A) coyotes or B) Satan worshippers. The family jury is still out on that one.

So when we adopted Allie, all five members of the family had to meet with the rescue organization reps and promise to take good care of her,  keeping her indoors only, for what we hoped would be a calmer life.  

But living indoors with me turned out to be a wild ride. Little was I or she to know.

A couple of years after we adopted Allie, our family moved from Phoenix to Southern California. Allie rode in my car's passenger seat as we drove nearly seven hours across the desert. She took to our new house well, but seemed to attach herself to me. As I wrote in a previous blog post  she was a one-person cat and I was her person.  

The attachment deepened as we both got older and sicker. She was never a lap cat and she didn’t like to be picked up. But she was loyal. She used to run upstairs and down, napping in various spots. She had to be in my range to be truly happy. If I was working on the computer upstairs, she would curl up in the adjacent daybed. When I was on that bed, recovering from surgery, she settled herself on the computer desk chair. During my months-long-decline in health, she put up with various nurses coming to give me lengthy intravenous injections and other treatments. She avoided strangers if she could and was  super picky about who could pet her and how they did it.

Allie liked to keep her eyes on me

Then when I got sicker and sicker, she was bereft. I entered the hospital one day in  February 2006 and didn’t come home for nearly five months. She gradually warmed up to my husband and some of the many friends and family who arrived at my house to help out. Love (or at least like) the one you’re with became her feline motto. 

When I returned home to a downstairs hospital bed, she was wary. I didn’t look like I did before. I was frail, used a wheelchair and needed help getting in or out of my bed. She stayed nearby but didn’t jump on my bed for a while. When she did, she didn’t like the crinkly noise from my waterproof mattress pads. Or the commode that was often in the center of the family room.  She was wary of the nurse who came every day to care for me. And the physical therapist who helped me learn how to walk again, with mobility aids that frightened her. When the house was clear of activity, she got comfortable sleeping at the foot of my bed or near my head, purring loudly. 

After more than a year of intense chemotherapy and another year of more rehabilitation, I had a relapse, needed more hospitalization and a bone marrow transplant that took me away for a solid month. 

Meanwhile, Allie was showing signs of age. The vet prescribed a senior diet, food that would make her joints feel better and medicine for arthritis. Once described by her first veterinarian as having “a sweet disposition and good looks to boot,” she was too arthritic to groom herself and her fur became severely matted. She was unhappy and in pain from the mats.  The vet shaved her so she could start anew. She didn’t like the look or the feel. And despite regular brushing, her mats returned. 

I could relate. At various points in my treatment, my hair was thin or sparse or shedding or gone.  I didn't like my look either. For months, I struggled to groom myself, too. Just leaning against the sink to brush my teeth or wash my face exhausted me. 

But as I slowly got stronger (and hairier), Allie got worse. It became difficult for her to ascend the stairs. She would stand at the foot and cry before making the painful hike to her litter box.  I could relate: I rarely go upstairs: it is possible for me, but extremely tough.

My living area became the downstairs. Allie’s did, too. We moved the litter box down. Allie wouldn’t even go into another room other than the one I was in. She would perch herself on our couch, and when I moved around the house during the day using my walker, she would quietly turn accordingly, so that her eyes would be on me. When I walked into the kitchen, she would follow me.  When I sat at the kitchen table to read my newspaper or work on the computer, she would sit on the chair beside me, nudging my arm or thigh. When I lay down for a nap, she would join me on my bed for one, too.  At night, she would sleep on the top of the couch so she could see me when I went to sleep and when I awoke.

She would take my place on the bed when I left, under the covers if she could get there or smack in the middle on top. But she wouldn’t sit or lay on top of me. Or anybody.  Like I said, she wasn’t a lap cat.

That changed a few weeks ago. Suddenly, when I would lie in my bed she would jump up and sit on my chest, her purring face inches from mine. If I was reading or holding my phone, she would rub her face on the corners of the phone or book, rendering whatever I was trying to do impossible. When I got up she would grudgingly jump down, but would soon return at the next opportunity. It was weird and annoying and sweet. She also warmed up more to my daughter and husband, climbing on the couch to snuggle next to them when they sat down. Wary and tentative her whole life, she was suddenly needy.

Then one Friday, when she hadn’t eaten for days, we arranged to take her to the vet. That day, she tried to jump on my bed and fell to the floor. She tried again and couldn’t make it. My husband picked her up and laid her on my chest for what would be a final time. I petted the sides of her face the way she liked it and she purred contentedly. 

Suffering from sudden kidney failure and a heart condition, she died in a hospital two days later.

The Arizona rescue organization had saved her from the pound days before she was to be euthanized. A pregnant stray, she was in foster care while she had her kittens. Then we came along, saw her sweet, sad calico face and invited her to join our family. We gave her a home and 14 years of life she would not have had. She hung on during the unexpected ride that my cancer created. And, like us, she adapted to the twists, turns and realities of my long fight. 

Like so many amazing friends and family members, Allie joined me on my horrible journey to hell and back. And like them, she brought love and devotion. 

In sickness and in health.

Being Seriously Ill is Embarrassing. Get Over It.

When I entered the emergency room by ambulance, neither one of my legs was working. It was the tipping point after months of sickness and intermittent loss of neurological functions. Doctors were desperately trying to figure out what was wrong with me.

As I lay on the gurney in the hallway, I spoke quietly to the nurse, trying not to let my husband or others nearby hear.

“I think I’m going to need a catheter,” I told her in a tiny voice.

It was embarrassing. I didn’t need to use the bathroom just then, but I wanted to let her know I wouldn’t be able to go by myself. I just wanted to be prepared.

Three months later, I was in a different hospital. Same disabilities. Two people were trying to get a good look near the end of my bed as one of them demonstrated how to insert a catheter.

Into me. 

So much for embarrassment. 

Months and months in hospitals and rehabilitation facilities have taught me this: If you get seriously ill, you can kiss your privacy and humility goodbye. Embarrassing moments are as frequent as visits from the nurse who comes around to take your vitals.

Somewhat shy or prudish? Get over it. Immediately. Get ready to be humiliated. What’s important is your health, not cringe-worthy moments that come with fighting for it. 

My baptism into this awkward world came when I was admitted to the hospital from the emergency room and had to summon a nurse. Nowadays you can’t just push a button and expect someone to come to your room. You have to specify what you need so the nursing station can send the appropriate responder. They don’t want to send you an R.N. if you merely want your water pitcher refilled. That task goes to an aide lower on the hospital staff totem pole. It makes sense, but it doesn’t make it easy.

I remember pushing the call button,using a shy, weak voice when a nurse replied over the loudspeaker and asked what I needed. “A bedpan,” I said. 

“What?” she said. “I can’t hear you.”

“A bedpan.” I said a little louder. I think the nurse asked me to again repeat it.

“A BEDPAN” I hollered with all my diminished strength, loud enough for the nurse, my roommate and any visitors to hear me clearly. 

The worst part of this routine was not only did I have to repeat it every time I needed a bedpan, but when I needed someone to retrieve the bedpan. Or change my diaper. I had to say it as LOUDLY and CLEARLY as I could, so everyone within range of my voice would know exactly what I needed.

Ugghh.

Let me explain that I grew up not discussing bathroom habits. It’s not that we were prudes, we were just courteous. Nowadays, people say “I gotta pee” or “I need to take a leak” or worse with regularity. I just didn’t. 

But in the hospital things are different. Living with roommate after roommate, I learned that nothing was sacred. Bodily functions and complaints, test results, family disputes, medical issues -- things that you would want to keep private -- were spoken for all to hear. And that was mild on the scale of humiliating occurrences and discussions. 

During nearly a year-and-a-half of chemotherapy for my lymphoma, I spent a week in the hospital per month. My release day was not always the same. It depended on blood levels: I couldn’t leave until rescue drugs had flushed the toxic chemicals out of my system. Luckily my husband was nearly always available to pick me up upon discharge. One week he was not. A friend came to help me. 

It was tedious, complicated and embarrassing. It’s not like when I had babies and was wheeled to the curb in a wheelchair, beaming proudly, carrying a newborn (or two), flowers and balloons. In these discharges, I still needed a wheelchair, but the rainbows and unicorns were gone.

I warned my friend when she entered my room: This is going to involve nudity, public urination and a diaper.

Thankfully, she was OK with it. She didn’t really have a choice. They wouldn’t let me leave the hospital until -- after a week of catheterization -- I could prove that I could void my bladder myself.  And because I could barely walk, I needed a bedside commode, which is not exactly private. Then I would act like a proud potty-training toddler and prove to the nurse that I was successful. Off came the gown I’d been wearing for a week (with help), on came the clothes (with help), including a diaper to ease my anxiety as we navigated LA traffic on the way home. (I’d been pumped full of a large amount of fluid for a solid week.)

I learned not to be embarrassed when asking for help or making requests, no matter how bossy or unpleasant it seemed. I asked visiting family and friends to sanitize their hands, even if they had already done so, or leave, if I wanted to be left alone. I casually referred to my “pee bag” when a visitor needed to carry it or hook it onto a pole so I could leave my bed. I directed a relative to please regularly suction the spit out of my mouth while I was hospitalized for my bone marrow transplant. The sores in my mouth (a frequent side effect of any stem cell transplant) made it excruciatingly painful for me to swallow even normal saliva.

I was sitting bare-assed on my bedside commode one time when a doctor came in to visit, pulling back the privacy curtain to have a chat with me. Stunned, I answered his questions as if I wasn’t sitting on a toilet. 

The nurse later chastised me for allowing him to speak to me in such a private setting. But the physician, who had some nickname like Dr. Bee because he flitted quickly from room to room, only made his visits once a day and I didn’t want to miss him. My family and I desperately needed updated information and questions answered as often as we could get it.

The humiliation continued after I was released from the hospital and in recovery at home. Some incidents are too horribly embarrassing to even say out loud (or write). 

My shyness at home eased up. When I was first released after four-and-a-half months in a hospital bed, I was unable to walk. Paraplegic for a while, my nerves and muscles were beginning to function as massive amounts of chemotherapy began to destroy the cancer cells in my brain. I was at home, but I still required a lot of care. I had to be lifted out of my at-home hospital bed and onto a bedside commode to relieve myself, summoning a home nurse or a family member when needed.

This was in the middle of the family room, mind you, so if an engrossing TV show was on, too bad. I made everyone leave the room while I sat on the pot. Slowly, I began to ease up on my rules.  After a while, I would let my nurse stay in the room, then I would expand the number of people who were allowed to stay when I and they got tired of this ritual.

The conclusion of this event was just as embarrassing. First I needed to be lifted back into bed, then whoever had attended me would have to clean up. I am so grateful to think what people did for me. All in my family room. Bless them all.

Eventually I didn’t need bedpans, commodes or a daily nurse. That didn’t mean the embarrassment ended.

For reasons that will remain private, part of my necessary medical supplies was a clear surgical gel. I could either get it at a medical supply store, or I could buy KY Jelly as a substitute. So I was happy that I could take myself to the store and shop, but not too thrilled that I would occasionally clear the shelf of the store-brand substitute for KY.

Then I realized I could order through an online medical supply store and avoid those trips through the grocery line. (“Holy crap!” I imagined the checker thinking. “Wasn’t she just here last week buying this stuff? How much lube does this woman need?”)

The online supply store trick worked beautifully.

Except for one time.

I had ordered less than a dozen tubes of the surgical gel. So when a huge, extremely heavy box appeared at my front door, I wasn’t thinking of medical supplies. I couldn’t even budge it to view the side to see where it was from. I had to wait until my son came home to bring in inside. As he hoisted it onto our dining room table, I said, “I can’t imagine what that even is!”

To which my son replied, “It says right here: Surgical Lubricant.” 

And so it did. It also said, in very readable numerals, the quantity of tubes, which was something like 1,100. The company I had to turned to for my discreet orders had accidentally shipped me a crazy amount. Then announced it on the outside of the box.

The company apologized and said I would not be charged for what I didn’t order or for the return shipment. All I had to do was leave it at my front door and they would send a truck to pick it up.

A truck finally came after a couple of days. Meanwhile anyone coming by my door could see what exactly was inside.

Ugghh.