Twenty Years - My Long Strange Trip Battling Cancer - Spoiler Alert: It has a Good Ending

Three weeks ago, I marked the 20th anniversary of my cancer diagnosis.

I remember July 14th, 2005 well. 

A weak, fatigued 48-year-old, I was severely anemic and had lost a lot of weight. I had a months-long never-ending fever of more than 102 degrees and had suffered drenching night sweats. I had endured scan after scan, numerous blood tests, a colonoscopy and a bone marrow biopsy to find the cause of my deteriorating health - to no avail. My primary care doctor had referred me to the top infectious disease physician in the LA area - Jeffrey Galpin - who took what must have been gallons of blood from me to find the cause of my deteriorating health. My friend Mary had flown from Northern California to accompany me to that important follow-up appointment. My husband, Matt, could not join me that day. Because I thought I might get a troubling diagnosis, I wanted someone with me.

But Galpin had no answers. He referred me to hematologist/oncologist Dennis Casciato (RIP) a noted expert on cancer. He literally wrote the book on oncology care for medical school students and physicians. 

Casciato’s notes from that day described me as “beyond pale” when I came into his examining room. I was alone. For the appointment with Casciato, my husband was out of the country, due to return later that day. 

The doctor looked at all my records - and I had plenty of them - and the notes from my infectious disease doc. He told me he was 99 percent sure I had stage 4 lymphoma. I began to cry. He took my hands in his and said my type of cancer was very treatable and possibly curable. He told me not to look up lymphoma on the internet because there are dozens of types of the disease and I might not have the one that I find.

I promised I would not do that. I didn’t have the strength to sit up and get on the computer, so it was pretty easy to comply.

My husband was in mid-flight at the time. I called my friend, Mary, in tears on the way home, telling her she had come to the wrong appointment.

When Matt returned later that day, I filled him in on the devastating details. Next up would be another bone marrow biopsy which we hoped would yield answers. Doctors said they need to find lymphoma cells to know specifically how to treat the cancer.

That answer wouldn’t come for another nine months. 

And in that timespan, I had been treated at three different hospitals, been in several levels of intensive care units, had my enlarged spleen removed in hopes of finding cancer cells. My team of doctors sent it to another top hospital in LA and to a spleen whisperer physician in the Midwest. 

I had a few transfusions, a number of spinal taps, another bone marrow biopsy and a procedure called plasmapheresis - in which they drained my blood, froze it and then returned it to my body.

None of these yielded any cancer cells or any improvement in my health. During that time, I was on such a high dose of prednisone that one veteran doctor said he had never seen such a case. And that was just my daily regimen. I had a nurse come to my home once a month to give me a mega-mega prednisone infusion. The docs agreed it was necessary to keep me alive.  Unfortunately, it also caused osteoporosis - my once strong bones became brittle. And each time I fell, I suffered compression fractures in my back. (I also have prednisone to credit for cataracts in both eyes.)

My team of doctors watched me become sicker and sicker while they debated whether to perform a brain biopsy. The argument for it - hopefully it would reveal cancer cells. Against -  it was very invasive and could cause brain damage or the incision might not be in the correct part of the brain to provide answers.

Meanwhile, my illness left me paraplegic for a spell, unable to speak for awhile and essentially blind in one eye.

One of my doctors was in touch with Memorial Sloan Kettering Cancer in New York to see if they could shed light in my case. One said I might have a new type of cancer, another said it might be an unknown ailment AKA Laura’s Disease. My oncologist said he would wake up at night and go to his computer to try to figure out my case.

Finally, they decided to proceed with a brain biopsy, which revealed the elusive cancer cells - large cell B non-Hodgkin lymphoma. It was a rare strain which required more than a year of in-patient chemotherapy - enough to kill an elephant, one of my doctors said. I began physical therapy in the hospital which brought me to tears each day: it was humbling and humiliating.

After four-and-a-half months, split among two hospitals and three rehab places, I was cleared to come home. For nearly a year, I went back to the hospital one week a month for my super-toxic chemo and stayed until it had been flushed from my body.

During this time I had an in-home visiting physical therapist, who helped me get out of a wheelchair and learn to walk using a walker.

A year later, my cancer returned throughout my body. I needed a bone marrow transplant which involved more chemotherapy - more than seven times the amount I had the first time. This time I did check the internet to see what my recovery chances were if my type of cancer returned. There was no data at the time because few people had survived my type the first time around. 

Pre-transplant with red marker on my arm. I couldn’t take a shower for days so the ink wouldn’t wear off.

The transplant process was grueling, involving a month-long hospital stay and my first radiation therapy: TBI for total body irradiation for four days. I remember crying during a prep for the radiation a few days before I was admitted -  the only time I consciously thought poor me. How the hell did I get here? Bald, essentially naked, fighting for my life lying on a cold capsule while the tech chatted about Pink Martini whose music was playing at the time. He drew lines with a red marker around my heart and lungs so those organs would be protected from radiation then took instant photos of me and my red marks. I had a fleeting thought that maybe he was a pervert who secretly kept a collection of red-circled breast pics for fun. I mean how tough is it to figure out where a patient’s heart and lungs are?

I was spared hair loss with my first round of chemo, but this new toxic cocktail caused most of my hair to fall within two weeks. I met with a doctor that Pink Martini day who said this hospital chemo would cause ALL the rest of my hair to fall out. It did. I was left with one eyebrow hair on one side and two hairs on the other. Oh and eight of my 10 toenails fell off.

Days before the transplant, I was hooked up to a miracle machine that harvested healthy baby blood cell

    

For my radiation appointments the following week, I was given medication to make them bearable.

In the transplant process, patients are brought close to death, Then baby blood cells are infused, either collected from the patient or a donor. In my case, I was able to donate my own, then they were frozen. On the morning of the transplant, the thawed cells were infused, then they were supposed to engraft and grow into healthy blood cells. Mine did, to a point. My blood numbers still aren’t where they are supposed to be, but they are close enough.

A journalist for nearly 30 years, I was encouraged by family and friends to write what I had experienced. I had plenty of material, but first need to heal and be able to sit up at the computer and write. (I rejected suggestions that I speak my words or type lying down. Neither of those worked for me). Three years later, I took an online class - one or two of my kids rolled their eyes at that one - on how to create a blog.

 On June 13, 2011, View From The Handicapped Space was born.

It came with a backstory and a target audience: “For people who find themselves in lives they hadn’t anticipated: seriously ill, disabled or caring for someone who is.”

My introduction:  “I’m in the middle of the age range of baby boomers. But I am way ahead of the rest of the pack when it comes to what we might face as we get older. Fellow boomers might not want to think about life-threatening illness, Depends, walkers, or handicapped parking. Neither did I. But I’ve been though it all and came through it OK. I am alive. And I am disabled. And I am full of opinions and observations that will help others prepare for and adjust to the world ahead of them.”

I am ever grateful for the invaluable love and support showed by Matt, my kids and other family and friends, for the medical team that literally saved my life, for anyone who donated to the cancer-related non-profits who funded research yielding protocols that contributed to my success. 

My life hasn’t been and isn’t easy. Since my diagnosis, I’ve fallen 21 times. I’m in constant pain. I take nearly 30 pills a day. I have seen and continue to see lots of physicians and undergo scans and tests.  I’ve lost 2 1/2 inches of height due to my steroid-caused osteoporosis. I quit driving when I couldn’t distinguish the gas pedal from the brake - due to neuropathy in both legs. I remain anemic and immunocompromised. My oncologist explains it this way: my blood cells aren’t doing what they are supposed to be doing. But they are doing enough to keep me alive. 

I’ll take it.

I’m an active 20-year survivor who has been cancer-free (since my transplant) for nearly 17 years. I’ve been able to enjoy two decades of precious time with people I love. I am physically limited in what I can do, but it’s a small price to pay. I tell people I can’t climb mountains, but could never do that when I was able-bodied. Now I have an excuse.

Me during the transplant. The sucker is to avoid the horrible taste that occurs when the baby cells enter your body

Several years ago, I spoke at a UCLA celebration of bone marrow transplant survivors. The school was celebrating its 50th year of its transplant program and I was marking my 10th year as a transplant survivor.  Many survivors, family and friend and medical professionals attended. A few current patients had been wheeled to the second floor with their IV poles to view the program in the courtyard. I told my story about when I first checked into my room on the transplant floor in 2008, a young woman stopped by. She was a bone marrow transplant survivor, and was returning a book to the unit and she asked if there were any new patients to the floor. She came to me to spark hope during desperate days. She said she had made it through just fine, despite many setbacks. I remember her beautiful long hair. “And this is my own hair!” she said. 

The encounter was memorable. 

And my transplant was a success - with zero setbacks. I told the patients I hope my story would encourage them.

I closed my short speech with my favorite summary of my life these past 20 years.

I’ve been to hell and back and hell and back with emphasis on the back.

Cheers to life

No Bruce for you! How this disabled fan overcame inept, unhelpful employees to see the Boss

It was the best of venues, it was the worst of venues.

Not long ago I went to two amazing concerts within four days. I saw Melissa Etheridge at a local community college and Bruce Springsteen at a larger out-of-town venue. 

One place went overboard in making sure the event was accessible to me with my walker and the other one could not have been worse. And to top it off, our ride from the hotel to the concert at the out-of-town show was a shuttle bus from hell. Not for the other passengers, but definitely for me and my friend. 

The first venue was the College of the Canyons Performing Arts Center (PAC). The staff and volunteers at the PAC an intimate venue with nearly 900 seats, have always done a wonderful job accommodating disabled patrons. I gave them a shout out in a blog post in 2012 for being a place that went out of their way to be accommodating. 

 Since then, it has gotten even better. Upon entrance to the lobby, I was ushered by a volunteer to a woman who was the accessibility concierge, standing at a podium a few steps away. Did I know where I was sitting? Did I need any assistance? I showed them my ticket and said that first I needed to use the restroom. Did I know where that was? Yes, I said, as I proceeded that direction with a friend. It was as if every attendant had been trained to look for disabled guests and to rush to their assistance. I was helped to my seat, assisted with fitting into a crowded row and was told they would take my walker away but to give them a wave if I needed it during the show. I did not. At the end of the show, a few helpers showed up immediately and assisted me in standing up and getting to my walker. 

 

Melissa killed it.

 I knew the Springsteen concert at the Kia Forum in Inglewood would be a challenge - involving a drive, overnight accommodations, transportation to and from the concert and getting to an accessible seat in the venue itself. And the Forum is pretty big - it can hold more than 17,000 fans - so just finding my way to the show was going to be a challenge. I always plan ahead and make advance phone calls to make sure things will be as easy for me as possible. I have used a walker for nearly 19 years since cancer  ravaged my body and brain and have seen varying degrees of accessibility over the years - although ADA compliance should be an indisputable standard. 

 The first obstacle was in securing tickets for the event. I had done my online research and learned that if I could only buy inaccessible tickets they could be exchanged by the venue for accessible seats. In the frenzy for post-COVID Springsteen tour tickets, I was thrilled to score two regular seats - nosebleeds - and the instructions were to call the Forum a day after tickets went on sale to speak to a person in the disabled assistance office. When I did that, I was told exchanging my tickets for accessible ones only applied to the day of the concert. Yeah, right, I’m going to book a hotel, travel more than an hour on the off chance there is an accessible and companion seat available. Then she asked “Do you want to buy accessible tickets?” Um, yes. She sold me two, even though Ticketmaster didn’t have any the day before. They would be available at will-call the day of the show. I sold my original seats to an able-bodied Springsteen fan.

 I called the hotel ahead of time to ask if it had a shuttle bus to take us to the Forum. The concierge said the hotel did not have one, but told me about a tour bus service available to take us to and from the concert. Perfect! My husband had driven us to the hotel and would pick us up the next morning. 

 Ever the planner, I called LA VIP Tours to see if their vans were accessible. One aftereffect of my cancer battle is neuropathy and weakness in both legs. They’ve been getting worse the last few years. I cannot walk long distances or go up stairs unless they are very low. Even a ramp is tough for me to navigate. “Do you need a wheelchair lift?” asked the gentleman at LA VIP.  That would work, I said. “We’ll get you up there.” Perfect. For $45 each round- trip, the van would take us to and from the show. I selected a 5 p.m. pickup time - the show was at 7:30. 

 Armed with maps of the concert venue and seating chart, I made some calls to ensure the experience would go smoothly. Because my accessible tickets were available at will-call, which I noticed was “at the top of the ramp”, I called the Forum’s disability service number the day before the show. Was there any way they could email me the tickets? No. Was there any way my friend could pick up the tickets using my ID and credit card so I wouldn’t have to go up the ramp? No. And I asked where I could be dropped off. At any of the entrances, she said. 

 I also wanted to know the location of  the stage, so I could know which exit or entrance to use. The seating map clearly showed it on one side and I knew my seats were ground level - across the room from the stage. This question seemed to flummox the aid. “The stage is in the middle,” she said. Um, no it’s not, I responded. The seating chart clearly shows the stage is on one side of the arena.

 I placed another call to the shuttle office. Did I have to request a van with a wheelchair lift? Do you use a wheelchair? the woman on the phone asked. No, I use a walker but I can’t go up stairs and the lift would work fine. “You’ll be able to go up these stairs,” she said. “They are very small steps.” 

 The day of the show, we made it to our hotel about an hour before pick-up. In keeping with the comedy-of-errors theme of our trip, the lady at the front desk said our room was not accessible even though we had reserved one. I had brought my emergency non-accessible room aids - a step stool and a toilet topper - because it wasn’t the first time a hotel messed up on accessible quarters. 

 They gave us keys to the room and, surprise: it was accessible. My husband took a photo of my friend, Norma, and me in the hotel room happily looking forward to the show….little did we know we would face obstacle after obstacle before a note was played.

 Outside the lobby, the van arrived right on schedule and I nearly cried when I saw how high the steps were to climb on board - higher than any stairs I had ever seen. My husband went to the room to get the step stool and with the help of three people, I was able to get up Mount Everest, I mean the VIP van stairs. We decided to leave the stool with the van driver Jesus for my return trip. After a four-mile ride, our driver pulled over not at one of the entrances, but at least 1/4 mile away across a nearly vacant parking lot. You are kidding, I said. We asked Jesus if he could just drive me closer after the other Boss fans in the van had disembarked. No, he said. Norma talked to a nearby Forum employee tending to the lot. Did they have a golf cart to get people with mobility issues closer? No, he said. 

 Jesus gave us a flyer showing where we were dropped off (the yellow star in the middle) and where we would be picked up (the other yellow star after we exited using the red arrow pathways).

The walk to the van after the show would be twice as long as the one I took upon drop off. It was across two busy streets at what would be nearly 11:30 at night. I walk at a turtle’s pace, so I would need super powers to get across those streets containing thousands of giddy fans heading home. If I didn’t survive the trek, arrangements could be made right away, because the van would pick us up between a cemetery and a flower shop. Usually, I replace my walker with a wheelchair if I know I have to walk a long distance - but my calls led me to believe I could be dropped off close to the entrance. 

 Trudge, trudge, trudge. We thought maybe we were in a Punk’d episode when we interacted with uninformed employee after uninformed employee. We asked directions to will-call and were pointed in one direction. Turtle-step after turtle-step, we didn’t see a clear path to the booth. We asked a second employee and they literally pointed the opposite direction toward the area where we had just walked. Turtle-step after turtle-step, we reversed our course and began to doubt the second employee’s guidance. We asked a third person and they sent us the opposite direction again. We were to keep going until we saw a black tent. That would be the will-call. 

 Trudge, trudge, trudge, crowded line after crowded line. We had been dropped off at the Kareem Court lot, on the exact opposite side of the box office. We finally got to the will-call booth under the black tent. It was the wrong will-call booth, only for VIPs. The correct one was up the dreaded ramp. 

 I found a solitary bench up the ramp where I sat after we retrieved our tickets. The arena doors were not yet opened, but fortunately there was a patio where we could buy food and drinks and relax before we got inside. We didn’t see any chairs. The guard at the entrance told Norma it would not be a problem to grab our food and then sit on the will-call bench to eat it. I went inside to select our fare, left Norma there to wait in line, then I tried to go outside the gate to the solo bench. The guards at the gate said I very definitely could NOT do that. No leaving the patio area once you are in. 

 I summoned Norma and told her the bench plans were no more. We set our tacos on a ledge next to the trash bins and I had to stand and lean against the ledge to balance while I ate my taco.

 When the arena doors finally opened, we had to use the restroom. The hallways were jam-packed and as we inched along, we faced a sea of humanity in line to use the ladies’ room. Usually I can politely make my way past, explaining that I’ll be using the disabled stall (which they should not be using) but it was too crowded to make any headway. 

 Then, the only nice staff member we met all night approached us and said there was another accessible restroom just down the hall and if we went to the guy in the suit, he would take care of us. Woo hoo! 

 Trudge, trudge, excuse me, sorry, trudge, trudge. 

 We passed a woman in a wheelchair complaining that the Forum needed to do a better job of accommodating disabled folks. 

 We finally got to the man in the suit. We told him we heard he could help us find the accessible restroom. He was visibly annoyed. We quickly realized he must have hated his job so much, there was no way he would voluntarily assist us in any way. Well, he said, you have to move there to the end of the line, which we did. And then, he told us to back in another inch and another inch. I expected him to say “NO BRUCE FOR YOU!” if we stepped across the imaginary line. When we finally got to the beginning of the line, he pointed to two accessible single-toilet restrooms. He gave Norma the third degree when she wanted to use the other toilet, like she was supposed to leave me there and get back in line for the first restroom we saw. 

 We took an elevator down to the floor level. Just as I’d feared, we had arrived at the opposite end of where our seats were in the arena. Trudge, trudge, trudge. We got to our floor level seats — on a slight platform with a wheelchair lift - 10 minutes before showtime at 7:30. We had left our hotel (I repeat: four miles away!) at 5 p.m. 

The wheelchair lift broke down about two hours into the show. I know because I had to use the restroom and it worked on the way down but when I came back it wouldn’t budge. It was quite a task to find someone who could fix it. Three guys who were using the lift as a bar top for their beers offered to carry me up the stairs. I declined. We finally were able to find an attendant who could jerry-rig it so I could get back to my seat. This was not an intermission. We were wasting valuable time, fussing with the lift rather than enjoying the concert.

  

The show was spectacular. 

 Before it was over, we decided we would not use the shuttle because it was just too far away and I dreaded going up the massive stairs again. And my legs were extremely tired. We planned to call an Uber, Lyft or taxi to take us the short trip back, eat the $45 and leave my handy step stool behind. We asked for assistance to find where the ride-shares or taxis picked up and we were met with another round of incompetent, unhelpful employees, pointing every which way. One even suggested we go out to the street and summon one from the sidewalk. We trudged to the opposite side of the building where there was Lot H, dedicated to ride-sharing services. We couldn’t book one for less than an hour wait. There was no place to sit. 

Just then a rogue car emerged from the lot with the driver’s window down, “Anyone need a ride?”

He was a freelance ride-share driver who charged us $80. He said other ride services would charge us a minimum of $150 after a big concert like this one. He said he is very aware of the needs of the disabled, because one of his legs was amputated above the knee. As I put my seatbelt on in the front seat, I silently hoped it wasn’t his right leg. He also showed me where I could scan to download a website so I could buy cosmetics from him! Ummm, no thanks. I just wanted to get back to our hotel. 

 He got lost along the way and when we eventually pulled up to our destination, he forced us to give him a crazy high tip. We were just happy he didn’t kidnap or kill us. All told, we spent close to $300 to be shuttled to and from our hotel to the Forum, including two tips to Jesus. 

Did I mention it was a FOUR MILE DRIVE? 

 There are three things I learned from this adventure:

1)  I will never go to the Kia Forum again. 

2) I will never book another trip with LA VIP Tours.

3) Venues should learn from the College of the Canyons PAC - whose event staff is mostly volunteers - when it comes to accommodating people with disabilities. A little bit of training is all it would take for event workers to be aware of and kindly help those of us who need it.

If Springsteen ever plays the College of the Canyons PAC, I will be there in a hungry heartbeat.

An unexpected holiday surprise - yet another fall

 ‘Twas the day before Christmas 2022 and all through the house, not a creature was stirring, not even a mouse.

But at 3 a.m. there arose such a clatter. Four strong creatures arrived - paramedics - to see what was the matter.

I had fallen getting out of bed to use the restroom, slamming my hip against my nightstand, knocking my shoes off, overturning my walker and splaying my legs beneath me. My husband, daughter and I spent an hour trying to get me up, then we decided to call for help. It took just a few seconds for three paramedics to get me upright and put me on the bed. 

The “I’ve fallen and I can’t get up” refrain from the old TV commercial has been an unspoken tagline of mine since I became disabled. While it was the subject of parodies and jokes back in the day, I no longer find the phrase amusing.

My disability knows no season or place. I can fall in the kitchen or on the street or in my bedroom no matter what the date or circumstances. I’ve taken at 16 spills since my non-Hodgkin’s lymphoma diagnosis nearly 18 years ago. They have resulted in trips to the ER, visits to urgent care, CT-scans and X-rays and several follow-up doctors’ appointments. Fortunately, since I finished my chemotherapy treatment and bone marrow transplant nearly 15 years ago, I’ve had no broken bones. Although I’ve had plenty of aches and pains and nasty bruises. The Christmas Eve tumble produced a bruise about the size and shape of Delaware, 

 

From the outside, I appear to be doing well after a near-miraculous recovery from cancer and a bone marrow transplant and for that I am forever grateful. But the truth is I struggle daily just to stay upright. I can lose my balance just standing around or when I go to take a step. I have neuropathy  (tingling, numbness and pain) in both lower legs and it has gotten worse the past few years. Also the strength in said legs has been diminishing. I have given up driving, I often need help getting up from a chair, and steps I could manage before are too high for me to ascend unassisted.

It’s not like I haven’t done my best to improve or maintain my strength, stamina and balance. Over the last decade-and-a-half I have sought help through medicine, regular exercise, aqua-therapy, acupuncture and multiple rounds of gait-and-balance physical therapy. 

I can imagine the shape I’d be in if I didn’t work so hard to improve my muscles and balance. My latest physical therapy sessions were ordered in 2021 after I had taken three falls in five months. 

The first spill was in at a darkened hotel room in Tucson, where I missed sitting on the bed and instead fell to the ground, managing to slam my head against the door and collapsed on a metal part of my tri-wheeled walker, gouging a bloody chunk out of my lower leg. 

The second was at a truck stop bathroom along Interstate 5 in central California as I was turning from the sink to the paper towel dispenser. It was a nice, clean restroom (a good place to fall, as public bathrooms go). A woman asked if I needed help and she corralled a man from the hallway to assist her in raising me up. I cut my elbow but didn’t hit my head.

The third was a doozy. I was standing on the asphalt at the LA Farmers Market, waiting while my husband bought something a short distance away. I had locked the brakes on what I called my all-terrain walker and shifted my stance to get more stable. It had the opposite effect and I dropped backward, falling like a tree, hitting my head hard on the pavement. I declined an offer of an ambulance and went directly to urgent care, where I learned I hadn’t caused any major injuries.

And so I went to six months of twice-a-week physical therapy sessions, trying to build my muscles and improve my balance. On the last day, the therapist assessed my progress, measuring my strength, timing my walk and making calculations. 

I asked what the results showed. 

“Well, you didn’t get any worse,” she said. 

Quite the endorsement for all that effort. 

A few days before my Christmas Eve fall, I had mentioned proudly to a friend that it had been eight or nine months since I had taken a tumble. I joked about putting up a sign like those in businesses that say “X number of days without an accident.” Way to jinx myself, some would say.

Ever the optimist, I seek the silver lining in each of these cloudy stumbles. I try to look at each fall as a learning opportunity, something I won’t do again. I have realized my disabled self cannot just walk like a normal person. My legs and feet don’t work like they should.

Lesson 1.  Concentrate on deliberately walking (heel, pad, toe) and lifting your feet. Any distraction, such as pointing out a lovely flower or bird while outside can make me lose my balance. That happened on a Santa Barbara sidewalk when I crashed to the ground a couple of years ago. My husband and a young man who happened to be walking in the crosswalk toward us helped me up. 

Lesson 2. Put your brakes on if your walker has them or have someone hold on to your walker as you navigate a step or slanted terrain. My worse fall occurred in 2012 when I was headed out my front door with a friend to go to lunch. I lifted my tri-wheeled walker over the threshold and it rolled out ahead of me. I slammed my face into the concrete, breaking my glasses, cutting my face and leaving a large lump and horrible bruises.

Shortly after my porch fall

A few days later 

Lesson 3:  Keep your phone with you at all times. I figured this out when I fell in our small half bath turning from the sink to the towel rack. Fortunately I had put the house phone in my walker pouch because my sons were due from an out-of-town trip that night and carried it in case they called. The towel rack and I crashed to the ground. I maneuvered around a tight space to reach my phone, and summoned my husband to help me up. I later learned to pack my walker with more in case I fall again.

Lesson 4: Injuries may not be immediately apparent, so be vigilant. What I’ve come to call the Spanx Incident occurred during my first (and last) attempt to put on Spanx shapewear. With the torturously-tight stockings almost on, I walked gingerly to my dresser to fetch another article of clothing. I tumbled, brought down a computer desk and a stereo system. After a friend helped me up and gathered the debris, I didn’t see or feel any physical damage and finished getting ready. Off we went to a festive book club holiday luncheon. That night when I took off my shoes, I discovered a very bloody and very swollen left big toe. When I went to the doctor the next day to see if it was broken, he said it was not, just smashed. And he told me, “The good news is you can’t feel your toe. The bad news is you can’t feel your toe.” A year after that spill, I managed to break another fall in the kitchen with my right hand. I did a jungle crawl to reach my phone and called my husband for assistance. I had no visible injuries so we proceeded with our neighbors to what I thought was a dinner for the four of us. It turned out to be a surprise party planned by my husband to celebrate my fifth birthday, post stem-cell transplant. I spent much of the rest of the day in tears and in a kind of shock, seeing a room full of family and friends who had traveled from all over to celebrate with me. It wasn’t until the next day that I woke up to find my right hand swollen to baseball glove size and unusable.

Hugging a friend at my surprise party 
oblivious that I had injured my right
hand 

Lesson 5: A smart watch is a necessity. It provides a nice alternative to the device the “I’ve fallen and I can’t get up” commercial was trying to sell. I can send messages or make calls on my Apple Watch just using my voice. And because it is waterproof, I can (and must) wear it in the shower. I learned that rule after a ceiling-to-floor caddy collapsed on me mid-shower, opening the door, spraying water all over the bathroom. I was trapped on my shower bench, unable to reach the faucet. Fortunately, my husband was home and I was able to holler loud enough for help. Now, I don’t take a shower unless someone is home with me and I am wearing my charged Apple Watch. 

Lesson 6: Always wear non-slip socks to bed in case you have to get up in the middle of the night to use the bathroom. Add a grabber by your bedside so you can move too-far shoes closer. On Christmas Eve at 2 a.m., I sat up in bed and tried to slip into my shoes.  It wasn’t dark. I made sure I had a nightlight on, particularly after the Tucson fall. But one shoe moved further away the more I tried to get it on. When I stood up to try to reach it, my sock slipped on the bedside rubber mat (which I use to help me get in my bed and to prevent slipping on the floors). I crashed hard against the nightstand. My body was in such a position that my two helpers couldn’t raise me up and we couldn’t get a foot underneath me on the mat to help me stand. What I needed was a couple more strong people. (My husband had recently hurt his back so I didn’t want to make it worse by wrenching me up.) We could have called friends or neighbors but I didn’t want to wake them up at 2 a.m. Christmas Eve. Thus, the 911 call. 

I didn’t break anything, as a later visit to urgent care proved. I have had osteoporosis since I was 49 - caused by massive amounts of prednisone beginning early in my treatment - and my oncologist says I could easily break a hip with a minor fall. Multiple falls later, I have not broken a bone. Perpetual knocks on wood. And some credit should go to Prolia, the high-dollar bone-buildingmedicine injected into my arm every six months. The drug is currently causing me other problems, but that’s a topic for another day.

Back on Christmas Eve, when the firemen had taken my vitals, filled out the paperwork, and finished their job, we thanked them profusely.

“Merry Christmas,” one of them said, cheerfully.

And to all a good night, I thought. I am hoping for a more stable new year. It’s been 44 days without a fall.