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.

  

Cause of My Post-Cancer Dropsies? God Knows

After I got out of bed the other day, I dropped my iPhone on the floor. A little while later, I opened a new carton of milk to pour on my cereal. I dropped the top on the kitchen floor. About 90 minutes later, when I was in my exercise class, I dropped my water bottle. When I got home, I decided to bake banana-strawberry muffins. When the timer went off, I pulled the muffin tin out of the oven, placed it on top of the stove and was going to pierce one of the muffins with a toothpick to test for doneness. The toothpick dropped from my hand, bounced on the stovetop and landed under the burner, which was under the muffin tin.

“Crap!” I said. 

A sugar-free hard toffee dropped from my mouth, bounced on the stove, and hit the floor, rolling underneath the edge of the oven.

It was not yet 11:30 a.m.

It was a typical day for me. Since I recovered from cancer, I seem to have a case of the dropsies. An extreme case. I drop things or knock them to the ground, large and small, easy to pick up and impossible to pick up. All day, every day. Some things are so preposterous that if you wanted to drop them, you couldn’t do it. 

On occasion, I ask myself: Did I always drop this many things? Or does every incident now burn itself into my brain because it’s SO ANNOYING to pick it up now that I am disabled? I believe it’s a relatively new thing. It’s just since I was stricken with cancer almost 10 years ago and rendered disabled that I have been dropping things at home and at stores, in parking lots all over town, sometimes in impossibly aggravating and laughable ways. 

I have three theories on this. One is that it’s somehow related to the tumors that were in my brain, creating nerve damage that cannot be reversed. (Real life examples of this are my neuropathy, screwed up leg veins, balance and walking issues.)

The second is that it’s related to chemo brain, a real side effect of going through toxic doses of chemotherapy (in my case massive). I’m not sure if it can last more than six years after your last dose of chemo, or if it can render you not only fuzzy-brained but clumsy-handed, too. 

My third theory is that God saved my life not once (when I survived a rare, horrible type of lymphoma) but twice (when I made it through a scary bone marrow transplant). So now he’s just screwing with me for his amusement.

It reminds me of beguiling scenes from the 60s movie “Jason and the Argonauts,” when Zeus and Hera were watching and controlling events on Earth from their vantage point on Mount Olympus. It was like a board game, only in Jason’s case it involved ships and multi-headed monsters and the Golden Fleece and in mine it includes an unending number of falling items.

When I came home after more than four months in the hospital and rehabilitation facilities battling cancer, I couldn’t walk. Intensive chemo and rehab therapy had gotten me out of a state of paraplegia, but the recovery was slow. As I slowly got better, it was difficult to carry things. I remember dropping things or knocking them over, but someone was alway there to assist me. As my strength grew and my flexibility and balance increased, I marked my progress. I remember telling my friend triumphantly that I had dropped a grape on the kitchen floor and I was able to pick it up myself. Yay!

Be careful what you celebrate. As if to test my new abilities, I started dropping and knocking stuff over like crazy. Some are easy to pick up. But others -- many others -- are not. At home, I will often have to ask for help. In stores and in parking lots, I politely ask strangers to come to my aid. In the grocery store, when I have my fold-up walker inside the basket and I am pushing the cart like every other shopper, I don’t appear disabled. So I will point this out when I ask someone for help, just so they know I’m not just bossy.

Some dropped items are merely annoying. These include pills, medication bottles, remote controls, phones. Others are more than that.  At home, I sit at the kitchen table on a chair with two pillows on it. One or both of the pillows are frequently falling, sometimes as I get up, sometimes minutes after I’ve left the table. Many

days, when I eat at the table, something will drop between the plate and my mouth, bounce off my lap, and land on the floor dead center beneath the table, just where I can't reach it. Peas, grapes, pieces of popcorn, nuts: it’s like a trail mix in the making on the floor down there.

Many dropped things require outside assistance. Like when I drop shampoo, conditioner, razors and soap in the shower. Or when any number of lip balms and lipsticks hit the pavement as I exit my car and hang my purse from my walker. Or when I miss the mail slot at the drive-though box and the wind blows my letter away. Or when I drop my keys outside my car door on a rainy day and they bounce directly under my vehicle.

A few are costly, such as when I dropped a nearly full bottle of my favorite perfume on the tile floor on my bathroom. Or the time I dropped a nice bottle of white wine as I was putting it away in the lowest shelf of our refrigerator door. I had just poured a glass, so the bottle was nearly full and I hadn’t even sipped the wine, so I wasn’t tipsy. It fell about four inches to the ground and shattered to pieces. 

Some are just puzzling. Once, my husband found my debit card behind the passenger seat of my car, on the floor. I didn't know my card was missing.

I’m a dropping maniac in the grocery store. I often leave fresh fruit or veggies on the floor as I shop in the produce department.  I’ve unleashed avalanches of tomatoes and apples. When I grabbed for some asparagus once, two bunches tumbled to the floor. I’ve dropped yogurt trying to toss it into my basket. Once, I dropped just the envelope of a greeting card. The definition of impossible is

picking up a single envelope on the floor while my walker is inside my shopping cart and I am balancing myself by holding onto the basket handles. I left the envelope there.

For two days, I kept a record of everything I dropped just to quantify things.  Each day, I totaled 10 or 11 items in a 12 to 14 hour period. Three were pill bottles, two were containers that held hairspray and mouthwash, one was a container of cantaloupe, breaking open upside down, spreading little wet chunks of fruit all over the floor. One incident occurred when I draped a belt on a towel rack and the rod broke off and fell to the floor, spilling two towels, the rod and a belt. The final episode one day happened when I removed a casserole from the oven, dropping it just a few inches from the stovetop, sloshing hot sauce inside the oven door, on the stove, onto the floor and on my ankles.

There are days when I think my third theory (divine intervention) is definitely in the lead, when clumsiness alone cannot explain these mishaps.

A fateful visit to Walmart was one of those days. I was going there specifically to return something and because I had old eyeglasses to put in the Lions Club box so they could be reused by people in need. To understand the context for this bizarre combination of mishaps, you first need to understand my shopping routine. I exit the car after dragging my portable, lightweight walker across my lap. I walk to an empty cart and balance myself while I fold the walker up so it fits in the basket, handles up. I put my purse in the front of the shopping cart and I am ready to shop (and drop). My first stop that day was the return desk. While in line there, both of my handles on my walker -- which I wasn’t touching -- fell off simultaneously on the floor. Then they bounced and landed in front of me, beneath some empty carts. These are five-inch handles that had NEVER fallen off. I can’t yank them off if I want to.

After I enlisted help to retrieve the handles and attach them to my walker, I proceeded to the return desk. Then I realized I had left my pack of eyeglasses in the car. So I walked back to my car and placed the cart leaning against my vehicle while I reached in and retrieved the glasses, then shut and locked the door. Just then, my shopping cart, with my walker and purse in it, started to roll down the inclined parking lot, coming to a stop against a car about 25 feet away.

No one was around. I stood, holding on to the side of my hot car for balance while I waited for a non-criminal-looking type to come to my rescue. My purse, phone, wallet and car keys were across the parking lot, ripe for stealing. 

I spotted a man who looked like he wasn’t a serial killer exiting the store quickly with a bag in his hand. I had to holler at him to get his attention, then yell to explain that the shopping cart far away from me was mine. I asked if he would please bring it to me. Which he did. 

I went into the store and delivered my bag of used eyeglasses. A charitable act, for God’s sake.

I think I may have heard snickers coming from Mount Olympus.

Beware of Care Facilities that Just Don't Care

Last week, my husband and I celebrated our 31st wedding anniversary.

We marked the day in a fairly routine style  -- exchanging mushy cards, going out for a nice dinner. But we’ve added one tradition to our anniversary celebrations over the last few years -- remembering our Worst Anniversary Ever in the Worst Nursing Home Ever.

It was our 25th, an important milestone. We had planned a vacation for this, but when I became gravely ill with cancer, those plans went out the window.

Instead we spent our big day in a dirty, depressing place filled with antiquated furnishings and equipment, pathetic patients, an incompetent staff, one incredibly rude doctor and nearly inedible food.

My husband bought red roses from a street vendor on his way in to see me that day and placed them on my nightstand. 

The sweet bouquet brought a tiny piece of happiness to a sorry facility that opened my eyes to how we care for those of us who are older or infirm. 

As a cancer patient, I felt powerless to control where I was sent to wait for my next session of chemotherapy. I wasn’t sick enough to be hospitalized, but I needed rehabilitation, because part of the lymphoma in my brain had left me suffering from paraplegia. So I was pretty much at the mercy of the placement people at the hospital where I had been for months.

The primo rehab place, at the hospital where I had stayed for months, had no open beds. So they transferred me to a nearby skilled nursing facility (SNF).  These days, what used to be called a nursing home is now referred to as a “sniff” in old and sick people lingo.

My son nicknamed it Sunshine Meadows, a name he imagined the facility might have called itself to convey the idea it was a semi-happy place. (Disclaimer: This one was in Los Angeles and was not related to the real Sunshine Meadows in Kansas or any similarly named place.)

It was a hellhole.

I was transported there via ambulance. When I was wheeled in on a gurney, I passed through an entry area full of grim-looking old folks in wheelchairs, staring into space.

My two roommates were ancient and miserable-looking and didn’t speak. (One spoke her own made-up language.) There was one small TV high in the center of the wall and no telephones.

My bed was inches from a ground level window. The windowsill was covered with dead bugs.

I was there for a little more than a week. By the time I left, I was throwing up, had a high fever, bed sores and a urinary tract infection.

Here’s what I was happy to leave behind:

OUTDATED ROOMS AND EQUIPMENT 

My room was overcrowded and the bathroom was filled with storage boxes. One visitor could sit on a chair while another visitor sat on my wheelchair in the bathroom doorway.

The hospital beds weren’t electric. Someone had to physically turn the crank at the foot of the bed to raise me up and turn it again to lower me. Because I was in excruciating pain when I wasn’t flat, I had to be raised and lowered at least three times a day for meals -- a chore the nurses seemed to detest. 

CRABBY, LAZY STAFF

It felt like the nursing staff hated Sunshine Meadows as much as I did. A good nurse can just make your day when you are at your lowest. But these guys made it seem like I was causing them to have the worst day of their lives. Sorry, I felt like saying, I have to ask for a bedpan. Or, sorry, I want you to lower my bed. Sorry, I’ve got a question for you. They didn’t bathe me or change my sheets regularly.

After I switched rooms to one that had a pleasant roommate, one of the nurses used to plant herself on the chair in our room -- “the nice girls” she called us -- so she could avoid having to care for others. Or us.

When my husband went to the nursing station down the hall to ask a question, he said he found a station of mass confusion, alarms going off, no one paying attention to anyone and one wobbly elderly guy my husband caught and put in a wheelchair.

HORRIBLE CARE AND HYGIENE

At the hospital, because I couldn’t turn myself over, staffers would regularly help me turn every few hours. Here, no one did.

When you are catheterized like I was, nurses are supposed to empty your urine bag routinely. Seems like Nursing 101. But when I noticed a putrid smell coming from beneath my bed, a visitor said the bag had overflowed. After the nurse was summoned, she emptied the bag and called someone to clean it up.

“I don’t think that smells like normal urine,” I told her.

“Yeah, sometimes it smells like that,” she replied.

“Do you ever test for urinary tract infections?” I asked. At the hospital they would check routinely for that because catheters and hospitals often result in a UTI.

“Yes,” she said. 

But they never did.

In my second room, I noticed my urine bag had again flooded the floor by my bed, so I called a nurse.

“No, it’s just the shine on the floor because it’s so clean,” she said.

Good try.

ONE UNBELIEVABLY AWFUL DOCTOR

When I entered Sunshine Meadows, I didn’t have any medicine with me. I assumed they would just transfer my prescriptions so I could resume my regimen. No, they said, they couldn’t give me anything until I had been seen by their doctor.

He would be seeing me within three days.

Because I was a huge doses of steroids, among other things, there was not to be any disruption in any of my meds. My husband, who had consulted by phone a doctor who had previously seen me, told that to the nurse, who relayed that to the doctor over the phone. No, the doc said, he would see me in a few days.

When my husband later complained again, the nurse handed him the phone so he could try to convince the doctor. When my husband said that my personal physician was strongly opposed to this, the doctor hung up on him.

I saw him on the third day.

FRIGHTENING AMBIENCE

Meals were a horrible adventure. You couldn’t pre-order food and you had to eat what showed up. Much of it was unidentifiable, appeared to have no connection to nutrition and lots was covered with pink granulated sugar.

The facility had an outdoor courtyard but it had been turned into a popular smokers’ lounge for staff. So if you wanted to get away from the depressing interior, your only choice was an equally depressing, potentially lethal courtyard.

Then there were the overly loud patients. One screamed his brains out every night. Another sang at the top of his lungs all day long in the hallways.

On the day Sunshine Meadows began to test fire alarms, I started thinking I was in a “Punk’d” SNF episode. A place really couldn’t be this bad: Poor care, horrible conditions and hours of deafening alarms?

But it was. When it came time for my chemo session, I was transferred back to the hospital where the staff there treated me with care, tested my urine, cleared up my infection and began a months-long process of soothing my bedsores.

As happy as I was to be out of there, I still couldn’t help thinking of the patients who were still there, trapped in misery. Did they have family members? Did they visit the place ahead of time? And here’s the worst part: On a scale of SNFs, Sunshine Meadows was probably better than most. 

It was a sad place to celebrate my 25th anniversary. But it’s an even worse place for the sick and elderly to live out their lives. 

Backstory: I'm a Survivor of Everything from Cancer to Paralysis to Hospital Roommates

To say I’m a cancer survivor isn’t enough. I’m a survivor of many things, all of which happened over the last six years.

Before then, I was a veteran journalist, a wife and mother of three, a Northern California native and Arizona resident who had moved to Southern California because my husband changed jobs. It was a good move, I repeatedly told my heartbroken teenagers, because we can keep our old friends and visit our beloved family in Arizona and Northern California while making new friends and learning new things in an exciting,  vibrant locale. 

I was at a proud place in my career. After decades in the newspaper business and freelance world, I had recently won national awards and the top award in Arizona journalism. When we relocated to California, I planned to resume my freelance writing once I got my boxes unpacked, the kids settled and my computer up and running.

Then, at age 48, I got sick. 

Doctors couldn’t figure out what was wrong with me. I had severe vertigo, a high fever for two months and drenching night sweats. I was unintentionally losing weight (which the old me would have loved) and was getting increasingly pale, weak and anemic.  I would lie down and take a nap after walking down the stairs from my bedroom to the family room.

Over the ensuing months, my legs quit working. Just like that. My ability to speak or see would at times just be gone, then come back.  Then I permanently lost the vision in one eye. I fell three times and suffered more than a dozen excruciating compression fractures in my back. I had every test and scan you can imagine. Multiple times.

A brain biopsy finally yielded lymphoma cancer cells. Doctors believed it was CNS lymphoma, affecting my central nervous system. (Later they determined it was diffuse large cell-B vascular lymphoma, one of a myriad of types.)

I was confined for  4 1/2 months in a hospital bed. I was paraplegic, couldn’t move a muscle from the waist down. I spent time in three hospitals and three rehabilitation centers, including one I believe was the best possible rehab place and one close to the worst.

At times I spoke in tongues, ripped out my intravenous line, was shackled to my hospital bed, had both an oxygen mask over my mouth and a feeding tube through my nose.

My lymphoma -- a rare type that does not show up on any scans -- was head to toe, but much of it was in my brain. Massive doses of chemotherapy for 15 months seemed to clear it up. But a year later, it returned.

I descended into hell again after my oncologist told me a stem cell transplant (also known as a bone marrow transplant) was my only option. I had that nearly three years ago and so far, so good.

So I am not just a cancer survivor, I’m also a survivor of a stem cell transplant that brought me back to and from the brink of death, massive quantities of steroids, severe steroid side-effects including osteoporosis and cataracts, total body irradiation, many surgeries, spinal taps, too many MRIs to count.

I’ve survived depressing paralysis, grueling physical therapy and terrifying drug-induced hallucinations.

I’ve had good and bad nurses, some of the best doctors on earth and a few who were far from that. I had a paid in-home caregiver whom I adored and a revolving door of visiting nurses who came to my house to give me shots or IV infusions.

I have seen my husband, children, friends and relatives bravely take on the sudden roles of caregivers and perform admirably.

I lived feet away from dozens of roommates in hospital- or rehab- rooms. Most were OK, a few were wonderful and some were downright rude and creepy. I’ve sampled hospital and nursing home food, tried out various wheelchairs, walkers and canes and visited countless number of accessible bathrooms.

Today I am able to do a lot of the things I used to do, albeit with planning and patience. I can drive, shop, cook, care for my family, visit with friends, dine out, and attend my beloved book club. I can go to the movies, concerts and plays. I can visit the beach. I’ve mastered the art of dancing while holding onto a walker. I attend a fabulous exercise class for “50 plus adults” at the local senior center.

When people see me with my walker, some give me a compassionate look. Several  will say, “You’re so young! What happened?”

I give them the short version. “I had cancer and part of it was in my brain.” 

Others -- a lot of them -- say, “Did you have hip surgery?”

To which I respond: “I  wish.”