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.

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.

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. 

What if the Driver Blocking your Disabled Parking Spot is a Member of Law Enforcement?

A regular topic of my blog posts is abuse or disregard of disabled parking spots. Some people just are uncaring and flagrant about breaking the law.

But what if the people blocking your spot are members of law enforcement? 

This happened to me recently when some LA County Sheriff’s Deputies blocked the only handicapped spot at my post office. It happened on the same day the local head of the district office was introduced in our local paper.

I sent him this letter in the mail the following day:

On Thursday, March 6, the same day the Signal ran an article about you becoming the top deputy in the Santa Clarita area, I was disappointed by actions of some deputies and annoyed enough to alert you to the incident.

I have lived in Castaic for the last 11 years and have been disabled for nearly nine of those years after a cancer battle. A former journalist, I write a blog about what I’ve learned and what I think needs to be brought to the public’s attention as I go through life on this different path. My blog is called View from the Handicapped Space.

A common topic is disabled parking and how frustrating it is to see so many insensitive people making my life worse by disregarding the law, either due to insensitivity or ignorance.

I’ve enclosed two of my posts regarding this issue, one which highlights the problems with only one disabled spot at the Castaic Post Office on Franklin Parkway and the other which points out how often careless motorists block such spaces.

Imagine my chagrin yesterday afternoon when I arrived at the post office around 2 p.m. to find the insensitive people blocking the only handicapped space there were three sheriff’s deputies.

Their vehicle was parked perpendicular at the end of the only disabled spot. There were plenty of other empty spaces around. I could have parked in one of those a distance away, but if you look at my post that is titled “Grrrr” it’s really a chore for me to walk all the way around to the slanted sidewalk so I can go up the handicapped ramp.

They did not appear to be responding to an urgent matter. The lights on the car were not on and they were walking slowly on the sidewalk, meeting up with a woman who they then accompanied into the office. At that time, I rolled down my passenger window and hollered at them to get their attention, waving my disabled placard. A female deputy approached and I asked her to please move the car, explaining it was blocking the only spot.

She did, without apology.

When I got into the post office, the deputies were in the area of the postal boxes, discussing something with the woman.

I would hope you would take a note of this incident. And emphasize to all your deputies that blocking a handicapped spot -- even for just a short time -- is rude and insensitive to citizens who they are supposed to be working to protect. 

I did not get a response.

In the big law enforcement scheme of things, disabled parking problems probably rate near the bottom. But from the perspective of all those who rely on those spaces to get to where they want to be, this is a huge deal. How many of us will have brushes with crime in their everyday life? For me, I have a few times been the victim of a thief. And, thankfully, I have never been the victim of a more serious crime.

But I routinely deal with disabled parking lawbreakers: people who are not handicapped but use the spots anyway, drivers who have borrowed disabled parking placards and think it’s OK to take the spaces from the disabled, drivers and passengers who literally jump out of the cars to go to a restaurant or shop. I feel powerless to do anything about them, except give them dirty looks.

My former hometown of Phoenix has a hotline for reporting illegal disabled parkers. No such thing exists in Southern California. One guy, an advocate for wheelchair users, recently made the news in Phoenix when he spotted and photographed an able-bodied Glendale Police officer in a disabled spot and requested that the officer be ticketed.

In that case, the Glendale Police Department chief and others responded right away, apologizing in an email. A police spokesman said such behavior is unacceptable and said the department was handling the incident internally.

Three weeks after I sent my letter, the sheriff’s office has not replied to me.

The disabled man in Arizona suggested that if the officer in question was not ticketed, the department should make him undergo disability sensitivity training.

"It's an issue everywhere," Timm Aguirre said. "This officer's actions show that he's saying maybe it's OK to just park somewhere just for a little while. It's just one spot.
But it's not OK."

Couldn't have said it better myself.

Cancer Survivor Celebrating My Fifth Stem Cell Birthday: Like Attending My Own Funeral

Friends and family from all over attended my mom’s memorial service 12 years ago. My husband and I brought our three kids from Arizona, my brother and his family came from Oregon. Former neighbors who had moved a few hours away more than 40 years earlier made the drive. Her best friend from her native Brooklyn, N.Y.,  came. (He had relocated to California.)  And local folks came, too.

Her close friends, parents of friends of mine, people she used to work with, people my dad used to work with. The woman who had cut her hair for decades was there as was the librarian from the branch she frequented. 

We gathered after the service in a familiar parish hall to enjoy Italian food and wine. We listened to Frank Sinatra and other music she loved. We hugged each other and talked about what a bright, wonderful presence she was in our lives. We also caught up. It had been so long since we had all seen each other. There were tears, but also laughs.

I remember thinking: too bad Mom couldn’t be here. She would have loved this.

Flash forward to September 2013. My husband threw a surprise party for my Fifth Stem Cell Transplant birthday. It was such a monumental surprise -- full of joy and happiness and dear, dear people. All to honor me!

As I told a friend on the phone a few days later: It was like being at my own funeral.

I highly recommend it. 

When I entered the room where my party was, the first thing I saw was a large group of people standing taking pictures. I thought we had entered somebody’s party. I told my husband, “They are taking pictures of something.”

A nanosecond later, I said. “They’re taking pictures of us!”

I guess they yelled surprise. I think they applauded. Then I began to focus on the faces. I saw my son, who I thought was working. Sprinkled among dear faces of family and friends from my town, I saw relatives from Arizona, my former neighbors from Phoenix, my friends who live in South Carolina, childhood friends from my hometown, Santa Rosa, Calif. 

As I looked from face to face, I realized they were celebrating me. My crawl back from the depths of cancer hell, my brief descent back into it and my successful bone marrow transplant, called the first day of my new life. Five years cancer-free is a huge milestone for me. My husband had been secretly arranging this gala for months.

And, no, I didn’t suspect a thing. Anyone who was there can speak to the pure shock I was in for hours. But it was a happy shock.

Among the 60 plus people at the party were friends and family from far and wide, several of my local book club buddies, exercise friends from the senior center (and the teacher), a roommate from my days more than 30 years ago at the Tucson Citizen newspaper. Those who couldn’t attend sent me touching cards.

It occurred to me as I surveyed this beautiful tableau: These people truly make up “the fabric of my life.”  

They all gathered to celebrate my life and to show how much they loved me. Those who wrote cards didn’t just sign their names. They said how much they treasured having me in their life, how much I inspire them with my courage and strength and positive outlook even through the toughest times.

They said the types of things people say at someone’s funeral.

Only they told it directly to me.

It made me think about some of the newer friends I’ve made since moving to southern California 10 years ago. I arrived here knowing exactly one family. Today I have wonderful friends, some of whom supported me through my illness and recovery and others who met me later but who continue to enrich my life. 

My mother had a rule.  She said if you speak highly of someone to others, you should also tell it directly to the person. 

After the party, I found myself doing that a lot. I told those who had attended (or wanted to attend) how much they mean to me, how lucky I am to have each of them in my life.

As I said, I highly recommend such an experience. You don’t have to sponsor a big, surprise bash. Just getting together to honor someone -- because you really mean it, not just because you have to -- will be something that person won’t forget.

If you can’t do that, take a moment to tell them what they mean to you.

It puts a tear in my eye and a smile on my face just remembering that minute when I looked around and recognized those faces. It was hands down one of the best days of my life. It was a magical night.

And I was here to enjoy it.