Tuesday, September 27, 2016

Five Ways to Handle a Cancer Diagnosis

Here are a few things you can do to help navigate a devastating diagnosis:

Don't get mired in "Why me?"

It's OK to be angry and feel sorry for yourself. For a while. But focusing on the "Why me?" question will drive you crazy and get you stuck in misery. There is no good answer to this. So don't blame God or yourself. I even suggested this to a friend diagnosed with lung cancer. She was a lifelong smoker who felt completely responsible for her disease. But lots of heavy smokers never get lung cancer and other folks who have never smoked get it. It doesn't make sense and it isn't fair. While you are dealing with a life-changing event, it isn't worth the energy to ask why.

Say yes to help.

People don't know what to do when they hear about your diagnosis. But let them do something. You or someone close to you can help guide them. When I was at my lowest I really didn't want to chat with everyone I knew. But I loved getting cards and offers of help. I learned to be specific: when a friend offered to do my family's laundry, I told her we were OK with the laundry but what we could really use were meals. And I asked her to spread the word.

Say yes to emotional help, too.

One of my hospital roommates with a similar diagnosis as mine (non-Hodgkins lymphoma) was exceedingly depressed. Married with teenage children, she was angry and hopeless. But she declined when nurses or doctors suggested she see a therapist or try an antidepressant. I  told her to accept their offers. It might help and it certainly can't hurt, I told her. I, too, have a husband and children. I cried in the hospital every day, but not all the time. I would weep through grueling physical therapy sessions.  But I was open to any kind of suggestion to alleviate my emotional pain.  I said yes to antidepressants, counselors, any volunteer who would hold my hand and a visit from any denomination of clergy. They all helped me get through my darkest times.

Don't be a defeatist.

Your life is not over, it's just different. It really annoys me when people will bring up their illness or age to qualify whether they will be alive at any day in the future. An older relative was hesitant to commit to a wedding a year away. I, on the other hand, said I would definitely be there (and I was). Another friend who is a cancer survivor routinely qualifies her plans with "I don't know what my future holds." News flash: Nobody does.

Focus on the good things day to day.

When I was released to my home after spending nearly five months in a hospital bed, I remember being moved to tears at the colors and beauty around me. The decor of my house, the backyard flowers, the chirping of birds: All were extra sweet to me. I still try to pay closer attention to such things as I experience them. We spend so much time griping. Really take the time to recognize the happy moments. Comment on them out loud so others can join in your reverie.

Wednesday, May 4, 2016

On the Road: Misadventures in Disability

Around my hometown, I prefer to frequent handicapped-friendly establishments. Sure, they are all supposed to be ADA compliant, but some just don’t make sense or are extremely difficult to navigate. I know where it’s a pain to get a parking spot and where it’s tough to maneuver through the aisles or tables.

I’d rather go to a store or restaurant where I know it will be easy to get parking, where I can guide my walker easily while inside and where the bathrooms are accessible and easy to navigate.

But it’s a whole different story when I hit the road. 

Some recent trips to Phoenix, where I spent 20 years as an able-bodied resident, showed I am throwing caution to the wind when entering unfamiliar territory.

A few months ago, we went to Phoenix to attend a reunion of newspaper people I used to work with. It was at a Mexican cantina near the university in Tempe. I had been there before when I lived in Arizona, before cancer (lymphoma) left me disabled. I was looking forward to a festive get-together with former colleagues.

My heart dropped when the hostess pointed to a private room UPSTAIRS. I looked at several steep stairs -- the equivalent of climbing a mountain for me. Was there an elevator? we asked. No.

I almost cried. Almost. After driving nearly seven hours across the desert to see some people I hadn’t seen in decades, I didn’t want to greet them with puffy, red eyes. 

Was there an alternate route with a ramp? we asked.  No. Was there an easier way? Yes, I would have to go through one of the dining areas, squeeze through the kitchen and up the alternate entrance with only three steeper steps and no hand rails.  


I had to interrupt the kitchen staff and then find two people to help me up the stairs. (Fortunately, I had one -- my husband -- with me.)

Is there a restroom upstairs, I asked? No. There was only the one downstairs. 


I thought I’d better use it before going upstairs. I would limit myself to one beverage   because I knew it would be a huge deal to get me down the stairs and back up. 

The ladies room had one disabled stall with a handwritten sign on it, saying “out of order.” I could not use any of the other non-accessible stalls.

I made my way back to the front of the restaurant and told the hostess that the disabled stall in the ladies room was out of order. Was there another bathroom in the place that I could use? 

Umm. She didn’t think so. She seemed thrown for a loop that I was even asking a question, any question. This one seemed to mystify her.  She asked another worker, who was equally perplexed. Then they brought out a manager, who told me there was no alternative restroom for ladies, but I could use the men’s room. 


He checked to see that that bathroom was empty, then waited outside while I used the handicapped stall. When I got out, I thanked the man for his help. He said to let him know if I needed to use the restroom again.

Yeah, right.

As the day progressed, the place would be more filled with beer-guzzling college guys who I’m sure would be thrilled to find their bathroom closed while I slowly used the only available handicapped stall in the joint. 

Upstairs, it was a wonderful reunion: filled with hugs and memories, pride in what we had accomplished and an undercurrent of sadness at how the newspaper business is in a painful decline. Of the roughly 100 people in attendance, several were older than me. Some had faced medical challenges, like I had. But no one else attending the event had limited mobility and faced the same roadblocks as I had.

Lucky them. If there had been anyone who used a wheelchair, they would not have been able to attend the party.

When the affair ended, two people helped me down the steps and my husband and I walked to my car. We decided to stop for dinner at a tiny, single-level restaurant near where we used to live.

Thankfully, the disabled parking spot was right in front and the restrooms were a few steps away from our seat. But when I finally got to use the single ladies room, I discovered it was not handicapped accessible. 


More recently, I attended a wedding in Phoenix. We stayed at a nice hotel in an accessible room. But the disabled parking spots were nowhere near my room. Of 40 spaces outside our building, not one was designated for a disabled person. And there were no curb cuts -- the slanted pavement where someone in a wheelchair or walker can transition from the lot to the sidewalk.

So even though there were plenty of empty spaces, if someone parked close to my room to let me in or out of a vehicle, I could not get up or down from the sidewalk. 

The nearest handicapped spots and curb cuts were at the end of my building, quite a journey for me as I pushed my walker under the Arizona sun. 

The wedding venue was a lovely outdoor restaurant/garden property that had two disabled parking spots close to where the event was taking place.


Two large port-a-potties were available for guests to use. There were stairs leading to them, so they were inaccessible to me.  My friend (the mother of the groom) had checked out the venue in advance because I had previously told her about a lack of accessibility at another part of the facility.  A staff member showed her a single unisex permanent restroom that I could use. The staffer said it was accessible.

I found out the day of the wedding that it was not. 

It was a huge effort for me to get inside the small bathroom. I  knocked over decorations as I moved around the tiny room, squeezing the handles of my walker to make it narrower. (A mobility aid without this feature simply would not have fit in the room.) And the toilet was extra low to the ground with no grab bars to help someone like me get on or off the commode. I might still be stuck on the seat if I hadn’t planned ahead and brought a small portable toilet topper, discreetly carried in a fashionable zipped-up tote. But it was still a major effort to simply get up off the toilet with my weak legs.

Although the wedding and reception were absolutely lovely and lots of fun, I had to leave early because getting to and from the restroom (and on and off the toilet) was simply too difficult for me. I was worn out.

On one of our drives home, we stopped at a rest stop in California. The ladies’ room was temporarily closed for cleaning. We were directed to a back-up single room bathroom. It was available and handicapped accessible.


There were two large storage buckets in front of the sink and paper towel dispenser. 


The door wouldn’t lock so my husband stood by, making sure no one entered while I was inside. While I maneuvered around the buckets to use the toilet, and contorted myself to wash my hands and dry them, a few ladies were gathering outside. I could hear them talking, anxious to use the only available public restroom.

Finally finished, I tried to open the door. It was stuck. Fortunately, my husband was right outside. I hollered at him through the door that I couldn’t get out. He tried to push while I pulled. It didn’t open.

I had a moment of panic and a brief vision of me stuck for hours in the hot bucket room with a mob of angry women outside, trying not to wet themselves.  

We pushed and pulled with more force and eventually got the door unstuck. If I had been in a wheelchair or on my own, I would not have been able to use the room.

Once freed, I made my way to our vehicle and we headed for home sweet home -- where I know the locations of the best accessible establishments. Yay.  

Tuesday, July 28, 2015

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.

Sunday, March 22, 2015

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.

Thursday, November 27, 2014

Joy to the World: My Thankful Holiday Letter

Five years ago I hadn't started my blog, which chronicles my lengthy battle with cancer and my experiences as a disabled person. But I wrote this, just for my own benefit, to keep a record of my thoughts during that holiday season. I recently found it on my computer and thought about posting it for the Christmas season this year. But I realize it is just as applicable on this Thanksgiving Day, as we head into the holidays.

My Christmas Letter 2009

This time of year, one often receives letters from friends and family celebrating the previous 12 months. Trips taken, vows exchanged, honor rolls achieved.

This year, five years after a debilitating illness left me handicapped, I have had an outstanding year. No visits to the Great Wall of China (seems to be the place to go), but I did take a trip down my long, steep driveway to get the newspaper.

All by myself.

Something I never could have imagined four years ago when I was paraplegic and unable to move even a toe.

I make a mental note every time I can do something again that I could not have done for years. To the healthy and able-bodied, these are often mundane tasks that are routine at best, an inconvenience at worst. For me, they are not easy, involving lots of moaning and planning and incorporating one of my four walkers or a cane.

Each small success feels like a miraculous achievement.

Here are some things I accomplished last year, 2009. Some I only did once, others many times. But all of them I could not have done a year ago. 

I took a bath in my own tub.
I walked down the hill to get my own paper.
I reached down to the bottom shelf to get a casserole dish that I needed to cook.
I danced with my husband. 
I went grocery shopping by myself.
I unloaded the bags when I got home.
I went to a park and took a walk.
I walked inside our local mall.
I played cards with my kids.
I filled my own car up with gas.
I lay on the beach.
I stayed up until midnight on New Year’s Eve and toasted to an even better 2010.

We should all be thankful for people we love, what we have and what we can do, no matter how big or small. 

I am, indeed.

Monday, August 25, 2014

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.


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.