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

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. 

 

My Blog is 10 Years Old. What it’s Meant, How it’s Going and How I’m Doing

My brother recently sent me a picture of my dad and me, taken in 2011. I am wearing a necklace given by a friend as a semi-gag gift. It’s a little pink computer on a chain, in celebration of the publication of my blog.

I’m not good with dates, and I couldn’t tell you if asked when I started this blog, but I knew I only wore that necklace on one trip and the picture was taken in 2011.

And that is when I realized my blog is 10 years old.

Wow.

My dad Frank Diamond and me in 2011

   

When I was going through torturous years fighting my rare non-Hodgkins lymphoma, friends suggested I write about my experiences.  Good idea, I said. But first I have to be able to sit up at the computer without being in horrible pain. I deflected all suggestions about writing while lying in bed or using a dictation program to compose. My three decades in journalism taught me to create while I type sitting up and I simply couldn’t break the habit.

So I took an online class on how to start a blog. Ha! my-tech-friendly kids said. You do not have to take a class to publish a blog. Well, I did. 

Our instructor made us sign up for Facebook and Twitter,  which I had been reluctant to do. She helped us customize our websites and focus on our missions. We had several writing assignments a week and we improved though feedback. So when we were ready to publish, we had several posts ready to share.

After six years of living my new disabled life, I had plenty of material. I had spent nearly five months straight in a hospital bed, finished a 15-month regimen of intense chemotherapy (enough, my doctor said, to kill an elephant), faced temporary paralysis and the inability to speak. I had lived with excruciating pain due to multiple compression fractures and dealt with steroid-caused osteoporosis and cataracts. I was released from the hospital and began intense home physical therapy to regain my ability to walk. Then the cancer came back a year later. In this round, I faced a terrifying bone marrow transplant, total body irradiation and chemotherapy that was seven times stronger than what I endured before. 

I began another slow journey of recovery.

I had enough experiences and opinions to fill a book.

Instead, I wrote my blog. Fifty-six posts in the last decade: 23 the first year, 14 the next and two or three in the subsequent years. In 2019 and 2020, I only published one. Last year, although I had two topics in my head for months, I didn’t write one. I was spurred on to compose recently after realizing theviewfromthehandicappedspace had turned 10 years old.

My excuse for not publishing more? I’ve been living my life.

Going to an exercise class twice a week, reading books, going to movies, celebrating happy occasions, mourning bad news. Meeting up with friends and family. Hugging and virtual hugging a lot. Attending book club meetings, going out to breakfasts, lunches and dinners and occasionally brunches or happy hours. Going on vacations, attending plays and concerts. Taking every opportunity to toast at every occasion, sometimes multiple times at a sitting. I am mindful of celebrating that I am still here with others whom I love.

I’ve also been busy seeing endless doctors, dentists, oral surgeons, physical therapists, acupuncturists and specialists I had never heard of. Test after test and appointment after appointment. 

After a decade, I’ve reached a point in my life where I think I am physically as good as I’m going to get. There has been a change for the worse in my ability to walk and balance. The neuropathy in my legs has intensified and I am weaker and more imbalanced than I have been in years.

While doctors order tests to find out if there is a medical reason for this and I attend regular physical therapy appointments, I am getting by doing all the things I used to do, but with rides and assistance from dear family and friends.

But I still plan on sharing through my blog. I know it has helped a lot of people already. 

In 2011, I chose the title for my blog and I wrote its purpose: For people who find themselves in lives they hadn't anticipated: seriously ill, disabled or caring for someone who is. I wrote a paragraph about the blog and I wrote a backstory, giving a short summary of how cancer had upended (and almost ended) my life. I wrote about everything I experienced. I criticized the layout of disabled bathrooms, lamented the poor choices of walkers and raged at rude able-bodied folks who park illegally in disabled parking spaces or rush by me to occupy the only handicapped stall in a public restroom. I talked about staying in one of the worst nursing homes and putting up with nutty (and possibly dangerous) hospital roommates. I lashed out at a concert ticketing system that is not friendly to disabled people.

I also celebrated the good things I have found over the years: the kindness of strangers, the establishments that have gone out of their way to assure accessibility, the comfort provided by my stuffed bunny and the joy of graduating to a real bed after more than a d0zen years in a hospital bed in my family room. I basked in the support of my family and friends, particularly at an amazing surprise fifth stem cell  transplant birthday party.

My most popular post by far was the one about disabled parking. I heard from lots of people in many states and a few other countries struggling to understand the rules. Some wanted to fight a parking ticket when they forgot to put up the disabled placard in a car, some wanted to know if their placard would be recognized in other states or countries (generally, it is), others sought to understand the requirements where they lived. And some wanted to rant against the lowlifes who park in the disabled spots with fake or improperly used placards.

While I don’t preach about my experiences with cancer or my blog, I am quick to offer support when I hear of someone with a new diagnosis or preparing for a bone marrow transplant.  I’ll email my go-to blog posts: one about hearing the initial news and the other a summary of important things I learned. I offer any other help they need. 

Dreading chemotherapy-induced hair loss? I’ll send the post I wrote about the hairy truth.

Facing a bone marrow transplant? I’ll send my post about that and will counsel  you by phone, as some have requested.

Many people have expressed gratitude for this advice. And two bone marrow transplant recipients have personally thanked me (via phone calls) for helping them through the process. One person had his wife call me from his hospital bedside to ask the name of the drug I had recommended to ask for if the nausea got too bad. (It was intravenous Ativan.)

All is not easy in my life these days. I have a compromised immune system so keeping safe through COVID-19 is vital to me. Also, my recent spills have been particularly troubling. I had three serious falls within a five-month period in 2021. (I’ve had more than a dozen since getting sick, but these were extra concerning due to their frequency.) Two required visits to urgent care to make sure I hadn’t  damaged my bones or brain when I slammed my head against a door one time and the asphalt the last.  I did not, meaning my Prolia is helping with my osteoporosis and my head is pretty hard.

I believe I’ve accomplished what I intended when I first started the blog: to make folks more aware of what living in a disabled world is really like and providing a glimpse into the inequities I and others face on a regular basis. I am ever grateful that I survived and beyond touched by the support of my family and friends. I am thrilled when I hear from friends whose eyes have been opened to the needs of the disabled: someone who teaches her children it’s not OK to use the handicapped stall, another who tells me how I would love a particular place because it is very accessible, and one who visited a restaurant ahead of time before we went to lunch there to investigate the layout and the ladies room. Another friend, when deciding on an office for her psychology practice in an historic building, made sure there was an accessible room for disabled patients to use. She was asked did she have any disabled clients? No, she replied, but I might. And others who rented offices in the same building might. The same friend made her remodeled bathroom accessible for when I come to visit.  Still another added a grab bar in the shower for when I am a guest. Others bought a portable ramp I can use when stepping into their home.

After I found myself in tears hearing the Tom Petty song “I Won’t Back Down” the first time I slowly navigated a Relay for Life survivors’ lap, I adopted it as my theme song for life. “You can stand me up at the gates of hell”- I might be leaning against a wall and desperately clinging to my walker - “but I won’t back down.”

My New Year’s resolution? To keep living my life and writing a blog post or two.

Happy 2022.