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

Beware of Care Facilities that Just Don't Care

Last week, my husband and I celebrated our 31st wedding anniversary.

We marked the day in a fairly routine style  -- exchanging mushy cards, going out for a nice dinner. But we’ve added one tradition to our anniversary celebrations over the last few years -- remembering our Worst Anniversary Ever in the Worst Nursing Home Ever.

It was our 25th, an important milestone. We had planned a vacation for this, but when I became gravely ill with cancer, those plans went out the window.

Instead we spent our big day in a dirty, depressing place filled with antiquated furnishings and equipment, pathetic patients, an incompetent staff, one incredibly rude doctor and nearly inedible food.

My husband bought red roses from a street vendor on his way in to see me that day and placed them on my nightstand. 

The sweet bouquet brought a tiny piece of happiness to a sorry facility that opened my eyes to how we care for those of us who are older or infirm. 

As a cancer patient, I felt powerless to control where I was sent to wait for my next session of chemotherapy. I wasn’t sick enough to be hospitalized, but I needed rehabilitation, because part of the lymphoma in my brain had left me suffering from paraplegia. So I was pretty much at the mercy of the placement people at the hospital where I had been for months.

The primo rehab place, at the hospital where I had stayed for months, had no open beds. So they transferred me to a nearby skilled nursing facility (SNF).  These days, what used to be called a nursing home is now referred to as a “sniff” in old and sick people lingo.

My son nicknamed it Sunshine Meadows, a name he imagined the facility might have called itself to convey the idea it was a semi-happy place. (Disclaimer: This one was in Los Angeles and was not related to the real Sunshine Meadows in Kansas or any similarly named place.)

It was a hellhole.

I was transported there via ambulance. When I was wheeled in on a gurney, I passed through an entry area full of grim-looking old folks in wheelchairs, staring into space.

My two roommates were ancient and miserable-looking and didn’t speak. (One spoke her own made-up language.) There was one small TV high in the center of the wall and no telephones.

My bed was inches from a ground level window. The windowsill was covered with dead bugs.

I was there for a little more than a week. By the time I left, I was throwing up, had a high fever, bed sores and a urinary tract infection.

Here’s what I was happy to leave behind:

OUTDATED ROOMS AND EQUIPMENT 

My room was overcrowded and the bathroom was filled with storage boxes. One visitor could sit on a chair while another visitor sat on my wheelchair in the bathroom doorway.

The hospital beds weren’t electric. Someone had to physically turn the crank at the foot of the bed to raise me up and turn it again to lower me. Because I was in excruciating pain when I wasn’t flat, I had to be raised and lowered at least three times a day for meals -- a chore the nurses seemed to detest. 

CRABBY, LAZY STAFF

It felt like the nursing staff hated Sunshine Meadows as much as I did. A good nurse can just make your day when you are at your lowest. But these guys made it seem like I was causing them to have the worst day of their lives. Sorry, I felt like saying, I have to ask for a bedpan. Or, sorry, I want you to lower my bed. Sorry, I’ve got a question for you. They didn’t bathe me or change my sheets regularly.

After I switched rooms to one that had a pleasant roommate, one of the nurses used to plant herself on the chair in our room -- “the nice girls” she called us -- so she could avoid having to care for others. Or us.

When my husband went to the nursing station down the hall to ask a question, he said he found a station of mass confusion, alarms going off, no one paying attention to anyone and one wobbly elderly guy my husband caught and put in a wheelchair.

HORRIBLE CARE AND HYGIENE

At the hospital, because I couldn’t turn myself over, staffers would regularly help me turn every few hours. Here, no one did.

When you are catheterized like I was, nurses are supposed to empty your urine bag routinely. Seems like Nursing 101. But when I noticed a putrid smell coming from beneath my bed, a visitor said the bag had overflowed. After the nurse was summoned, she emptied the bag and called someone to clean it up.

“I don’t think that smells like normal urine,” I told her.

“Yeah, sometimes it smells like that,” she replied.

“Do you ever test for urinary tract infections?” I asked. At the hospital they would check routinely for that because catheters and hospitals often result in a UTI.

“Yes,” she said. 

But they never did.

In my second room, I noticed my urine bag had again flooded the floor by my bed, so I called a nurse.

“No, it’s just the shine on the floor because it’s so clean,” she said.

Good try.

ONE UNBELIEVABLY AWFUL DOCTOR

When I entered Sunshine Meadows, I didn’t have any medicine with me. I assumed they would just transfer my prescriptions so I could resume my regimen. No, they said, they couldn’t give me anything until I had been seen by their doctor.

He would be seeing me within three days.

Because I was a huge doses of steroids, among other things, there was not to be any disruption in any of my meds. My husband, who had consulted by phone a doctor who had previously seen me, told that to the nurse, who relayed that to the doctor over the phone. No, the doc said, he would see me in a few days.

When my husband later complained again, the nurse handed him the phone so he could try to convince the doctor. When my husband said that my personal physician was strongly opposed to this, the doctor hung up on him.

I saw him on the third day.

FRIGHTENING AMBIENCE

Meals were a horrible adventure. You couldn’t pre-order food and you had to eat what showed up. Much of it was unidentifiable, appeared to have no connection to nutrition and lots was covered with pink granulated sugar.

The facility had an outdoor courtyard but it had been turned into a popular smokers’ lounge for staff. So if you wanted to get away from the depressing interior, your only choice was an equally depressing, potentially lethal courtyard.

Then there were the overly loud patients. One screamed his brains out every night. Another sang at the top of his lungs all day long in the hallways.

On the day Sunshine Meadows began to test fire alarms, I started thinking I was in a “Punk’d” SNF episode. A place really couldn’t be this bad: Poor care, horrible conditions and hours of deafening alarms?

But it was. When it came time for my chemo session, I was transferred back to the hospital where the staff there treated me with care, tested my urine, cleared up my infection and began a months-long process of soothing my bedsores.

As happy as I was to be out of there, I still couldn’t help thinking of the patients who were still there, trapped in misery. Did they have family members? Did they visit the place ahead of time? And here’s the worst part: On a scale of SNFs, Sunshine Meadows was probably better than most. 

It was a sad place to celebrate my 25th anniversary. But it’s an even worse place for the sick and elderly to live out their lives. 

Backstory: I'm a Survivor of Everything from Cancer to Paralysis to Hospital Roommates

To say I’m a cancer survivor isn’t enough. I’m a survivor of many things, all of which happened over the last six years.

Before then, I was a veteran journalist, a wife and mother of three, a Northern California native and Arizona resident who had moved to Southern California because my husband changed jobs. It was a good move, I repeatedly told my heartbroken teenagers, because we can keep our old friends and visit our beloved family in Arizona and Northern California while making new friends and learning new things in an exciting,  vibrant locale. 

I was at a proud place in my career. After decades in the newspaper business and freelance world, I had recently won national awards and the top award in Arizona journalism. When we relocated to California, I planned to resume my freelance writing once I got my boxes unpacked, the kids settled and my computer up and running.

Then, at age 48, I got sick. 

Doctors couldn’t figure out what was wrong with me. I had severe vertigo, a high fever for two months and drenching night sweats. I was unintentionally losing weight (which the old me would have loved) and was getting increasingly pale, weak and anemic.  I would lie down and take a nap after walking down the stairs from my bedroom to the family room.

Over the ensuing months, my legs quit working. Just like that. My ability to speak or see would at times just be gone, then come back.  Then I permanently lost the vision in one eye. I fell three times and suffered more than a dozen excruciating compression fractures in my back. I had every test and scan you can imagine. Multiple times.

A brain biopsy finally yielded lymphoma cancer cells. Doctors believed it was CNS lymphoma, affecting my central nervous system. (Later they determined it was diffuse large cell-B vascular lymphoma, one of a myriad of types.)

I was confined for  4 1/2 months in a hospital bed. I was paraplegic, couldn’t move a muscle from the waist down. I spent time in three hospitals and three rehabilitation centers, including one I believe was the best possible rehab place and one close to the worst.

At times I spoke in tongues, ripped out my intravenous line, was shackled to my hospital bed, had both an oxygen mask over my mouth and a feeding tube through my nose.

My lymphoma -- a rare type that does not show up on any scans -- was head to toe, but much of it was in my brain. Massive doses of chemotherapy for 15 months seemed to clear it up. But a year later, it returned.

I descended into hell again after my oncologist told me a stem cell transplant (also known as a bone marrow transplant) was my only option. I had that nearly three years ago and so far, so good.

So I am not just a cancer survivor, I’m also a survivor of a stem cell transplant that brought me back to and from the brink of death, massive quantities of steroids, severe steroid side-effects including osteoporosis and cataracts, total body irradiation, many surgeries, spinal taps, too many MRIs to count.

I’ve survived depressing paralysis, grueling physical therapy and terrifying drug-induced hallucinations.

I’ve had good and bad nurses, some of the best doctors on earth and a few who were far from that. I had a paid in-home caregiver whom I adored and a revolving door of visiting nurses who came to my house to give me shots or IV infusions.

I have seen my husband, children, friends and relatives bravely take on the sudden roles of caregivers and perform admirably.

I lived feet away from dozens of roommates in hospital- or rehab- rooms. Most were OK, a few were wonderful and some were downright rude and creepy. I’ve sampled hospital and nursing home food, tried out various wheelchairs, walkers and canes and visited countless number of accessible bathrooms.

Today I am able to do a lot of the things I used to do, albeit with planning and patience. I can drive, shop, cook, care for my family, visit with friends, dine out, and attend my beloved book club. I can go to the movies, concerts and plays. I can visit the beach. I’ve mastered the art of dancing while holding onto a walker. I attend a fabulous exercise class for “50 plus adults” at the local senior center.

When people see me with my walker, some give me a compassionate look. Several  will say, “You’re so young! What happened?”

I give them the short version. “I had cancer and part of it was in my brain.” 

Others -- a lot of them -- say, “Did you have hip surgery?”

To which I respond: “I  wish.”