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

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.

My Walker is an Open Invitation to Interrupt Me

When I was in grade school, there was a popular prank that involved putting a “Kick me” sign on someone’s back. You would cheerfully greet the person with a pat on the back, and surreptitiously stick on a piece of paper with the handwritten words and hope it would stay on for hours.

Hilarity would ensue.

These days, I feel like my walker serves as my personal “Kick me” sign, an invitation that says: 

“Hey, why don’t you stop this disabled stranger (or get in her way) and ask her questions, quiz her about her walker, tell her about your mother, grandfather, aunt, uncle, etc. who has a walker/cane/wheelchair, ask what is wrong with her, tell her all your health problems or those of your mother, grandfather, aunt, uncle, etc?”

That has to be the reason why complete strangers, when they see me using my walker, feel compelled to approach me. And comment. Or holler.

And in one case, almost knock me over.

I didn’t experience any of this when I used a wheelchair, but I’ve been using a walker for more than 10 years now and it’s been an endless stream of uninvited interactions. Because I have limited mobility, I can’t just walk away quickly or pretend like I didn’t hear them. So I am drawn into many conversations.

And because I am very, very nice, I will patiently answer their questions or listen to their stories, even when I just want to go from point A to point B and not necessarily have a long chat.

I have used a walker for about 14 years, ever since cancer ravaged my brain and abilities. My rare type of non-Hodgkins lymphoma is gone. (Woo hoo!) But the disability remains.

And I have a fleet of walkers  of various types to help me walk. Each has its own function. There’s one I use indoors at home, another outdoors at home and still another awaits me when I go upstairs. There’s one I use in my exercise class and a lightweight one that folds up and is easy to put in my shopping cart. There’s a different lightweight one that I use when walking longer stretches and there’s the tri-wheeled one I used for long distances or uneven terrain. There is another one which incorporates a seat but it is too bulky to take in the car and doesn't really work for someone like me who cannot balance by myself. 

I am always in search of the perfect walker. I’ve even advised two different college students who wanted to design one as part of their studies. But alas, I haven’t yet heard of The Perfect One. (Some of my criteria: lightweight but sturdy, foldable and portable, wheels that swivel, brakes that work, a fashionable look and affordable.)

Others are apparently on the hunt as well.

“Well, look at that!” they will say. “That’s different. I’ve never seen one of those! Maybe mom (etc. etc.) would like one of those. Let me have a look at it.” 

These comments are usually when I am either using one of my lightweight walkers or my tri-wheeled one. They fold up narrow while I am walking, which comes in handy when squeezing between tables in restaurants or aisles in stores. I am happy to share information about the type of walkers they are. But often my patience is tested. 

I was using one of my lightweight walkers one day as I passed by a woman waiting in the courtesy area at the drug store pharmacy, behind the line so you don’t overhear the other customer’s business. I was just passing by, not in line for the pharmacist, when the lady exclaimed over my walker, came over and tried to yank it from me.

“Well that’s a nice one!” she said, and with both hands grabbed the handles of my walker, trying to take it for an immediate test drive.

I held on for dear life, saying, “I need this to walk! You can’t just take my walker away!”

Another time, I was in a nail salon waiting area and another lady — intrigued by my walker — told me about her mother who uses a mobility aid. She asked if she could take it for a test walk.

Yes, I said, because I was sitting down and didn’t need it. She wandered around the salon for a bit and returned it.

I have answered questions about the brand, where I got it, how much it cost, and my illness. I don’t mind as long as you are polite about it and the question doesn’t stretch into a long conversation.  I was on a sidewalk in Palm Desert on a mini-vacation when a woman walked up to me and loudly said: “Hip or knee?” 

“Pardon me?” I said. 

She repeated “Hip or knee? Which operation did you have?”

“Neither,” I said. “Brain cancer.” 

(And top of the morning to you, too, I wanted to say.)

Then, she stopped and told me her hip or knee and walker story and I told her a brief version of mine.

I’ve experienced some commenters who are brief and to the point, and some who are a bit rude like she was. No time for chit chat, they just want me to answer the questions of where I got my walker and what is wrong with me.

I was just sitting down in a darkened movie theater recently when a voice barked “Temporary?” My husband looked around to see a woman sitting alone in an aisle behind us. “Are you talking to us?”

“Yes, is that walker temporary or permanent?” 

“Permanent,” my husband and I both answered.

“Well, have you seen the walkers that are upright with the high handles. My sister uses one of those and she really likes it……yada yada yada………”

I told her I had checked those out and they were too heavy for me to use in my car and too expensive. And, I wanted to say, can I just get ready to watch the movie?

Then there are folks who see me and tell longer stories. One time I was at car wash, sitting on the bench waiting for the signal my vehicle was ready. A guy next to me struck up a conversation about disabilities in general… and how he is a minister of some sort and they have a lot of disabled people come to the services…..yada yada yada. And on and on. 

Another time I was at a concert and was heading to the restroom during a break and a man came up to me and said his wife used a walker, too, after surgery and she’s sitting over there….yada yada yada…Did I mention I was on my way to the restroom? And didn’t have extra time to chat? 

After show, he met up with me again in the line to buy merchandise from the band. And his wife was there so I got to meet her and hear about her prior surgeries and another upcoming one and…yada yada yada… until somebody protested that we were holding up the line. 

Some days, I just want to make a clean getaway. On a hot day a few weeks ago, I had left my local Walgreen’s and was in the driver’s seat of my car folding up my walker to put it inside when I heard a loud voice. “I’ve been there!” A woman was heading my way, came over to the driver's side, said she used a walker for a while when she had some sort of operation or injury. And she proceeded to fire questions at me:

"Why do you use the walker?"

Cancer.

"What kind of cancer?"

Non-hodgkin's lymphoma. Mostly in my brain.

"Where do you live?"

Here in Castaic.

"Where in Castaic?"

Thinking does she want my address?, I gave her the general neighborhood where I live.

"I’m pretty sure it’s the water. Everything here has been poisoned from munitions plants."

Well, I got sick right after I moved here, so don’t think it’s from that.

"You should check it out. The water tables have been poisoned.

Who is your doctor?"

He’s from UCLA.

"Hmmm."

Ok, I kinda gotta go.

"Have you heard of_____?"

No.

"Well, it’s when you walk in nature and commune with the earth and the spirits. I live in (a mountainous area about 20 miles away) and go on them all the time and I will pray for you next time I’m on one."

OK. Thank you… I kinda gotta go.

All of these people are well-meaning. But imagine if you were interrupted all the time when you are just trying to get around and do your shopping, get your nails done, get in your car or watch a movie. These meddlers are lucky I’m so nice.