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

What to Say to Someone with a New Cancer Diagnosis

When you hear someone has a cold or the flu, you know what to say. 

But when you hear someone has been diagnosed with cancer, it’s another story.

What do you say? Should you contact the person right away or would he or she prefer to deal with the horrible news alone for awhile?

I’ve been on both sides of these questions: the person getting a cancer diagnosis (twice) and the person who hears that someone they care about has cancer.

The National Cancer Institute estimates approximately 1.6 million new cases were diagnosed in 2011. Behind each of those numbers is a person who is devastated when he heard the diagnosis and untold family members, loved ones, friends and acquaintances who are also shaken.

So how to react? I know every case is different, But here’s my advice.

First, gauge where you are in the patient’s circle of support. On a scale from significant other to acquaintance, where do you rank? 

When I was diagnosed, I wanted to hear from my closest relatives and friends, but I certainly did not need to hear right away from everyone I’ve ever known. There is that initial stage where you are stunned and you don’t really know much and it’s hard enough to process the news. You don’t want the phone ringing off the hook.

If the new patient has a spouse or significant other, use that person as a gatekeeper.  Text or email is preferable to an interruption. Ask if the patient is up to taking phone calls and when might be an appropriate time to chat or visit.

(Warning: this is not foolproof. One friend of mine was told she had to go through a gatekeeper to contact her newly-diagnosed friend, but when she later reached out directly, the patient, feeling somewhat abandoned, was glad to hear from her. Apparently the gatekeeper was self-appointed and not patient-sanctioned.)

Greeting cards, emails and texts are wonderful ways to tell a patient you are thinking of them, praying for them, pulling for them. Say that you are available if she wants to talk or chat via email or Facebook message. Tell her you will lend an ear if she wants to vent or cry. (And don’t feel slighted if you don’t hear back from the patient. It’s sometimes exhausting to be seriously ill. But rest assured the gesture is appreciated.)

My mother-in-law used to send me a card in the mail about every two weeks when I was sick at home. The greeting always brought a smile to my face and let me know, unobtrusively, of her continued support.

I got a lot of cards, flowers and notes. My husband would pass along messages that he received via email. They all meant so much to me.

Hallmark makes cancer-themed cards, available online or in stores for when you don’t know what to say. A card in the mail with a notice of a donation to the American Cancer Society or other specific cancer charity would be lovely. Cancer charities fund research and offer information and support such as rides to chemotherapy appointments. 

Food or take-out gift certificates are always welcome. When you are shellshocked by the diagnosis, meal-planning is low on your priority list. 

But don’t deluge the person with casseroles and greetings. It’s likely to be a long struggle. Cards, food and e-notes of care will be welcome for some time. Here’s my advice on what to say right away:

Say you are sorry to hear the news and you will support them. Say you don’t know what to say.

Look for cues. Cry with them if you must. Sometimes patients could use someone to cry with: sometimes they are sick to death of crying. Sometimes, the patient just wants to hear someone say, “poor baby.”

Don’t ask too many questions. Make your queries open-ended. “How are you feeling?” “What does your doctor say?” or “What’s next in your treatment?” are better questions than, “So what are your odds?”, “Do they know what causes this?” and “Are you going to lose your hair?”

Chances are the patient does not understand any of this yet. It’s shattering to get a cancer diagnosis but it’s also frustrating trying to answer questions when you are a newbie in the cancer world.

Let the patient bring up details. Some people don’t like to disclose much: others find it cathartic to repeat everything she knows. Allow the sick person to be your guide.


Which brings me to another point: The patient needs to be honest and be frank about what is appropriate. It may change as the fight continues.

It’s OK to say you don’t want to speak to anyone or to limit the subject matter. I was out of phone contact for months while I was hospitalized. When I was well enough to be able to speak on the phone, I remember telling my husband one day that I only wanted to speak to someone  if they didn’t mention cancer. The weather, what the caller did the previous day, movie reviews ... anything would be preferable (that day) to the all-consuming topic of my health.

It’s OK not to want to see anyone. During the hospital part of my stem cell transplant, I said no to some visitors from overseas who wanted to come by my room. When I was homebound, friends would drop food at the door without stopping in. That’s what was needed at the time.

Another suggestion: Ask if the patient wants to be put in touch with a survivor. Almost everyone knows someone who has survived the cancer fight. I found such contacts invaluable. The American Cancer Society can help provide inspirational folks to connect with or you could do that for your friend. 

I have often served as a resource. I don’t force myself on anyone, but if they are open to it, I give them what I call my cancer pep talk.

I say I know they feel like it’s the end of the world. And their families probably do, too. But it’s not, I tell them. In fact, there is no better time to get cancer. Research has come so far and medications have improved. Cancers that not many years ago were a death sentence are not any more. Doctors know specifically what treatment to use for which cancer. If plan A doesn’t work, they will attack it with plan B.

It’s scary and difficult and it will be hard on everybody, I say. And then I tell them of  people I know in recent years who have been diagnosed with different types of cancers, including colon, lung, bladder, prostate, breast, and mine, lymphoma. They are all still here.

If you know of inspirational cancer tales, you can offer those. 

Or feel free to use mine.

Why Donations are Critical in the Fight Against Cancer

Actress Dana Delany gave a moving tribute to her father and friend, Stand Up To Cancer co-founder Laura Siskin, this weekend in The Huffington Post.

She describes how cancer took her father’s life in 1981 and just recently, Siskin, an accomplished Hollywood producer whose Stand Up organization has already raised $200 million for cancer research. Delany, who was at the first  Stand Up TV program in 2008,  laments the fact that decades after her father’s death, some 75 percent of people diagnosed with pancreatic cancer are dead within a year.

Then she makes a plea for people to donate in honor of somebody at the Stand Up To  Cancer website to continue to raise money for cancer research.

I second that idea.

Laura Laughlin at Relay for Life

Donations -- whether they are to the Stand Up fund, the American Cancer Society, Susan G.. Komen for the Cure, or any of the cancer-specific fundraising organizations -- help fund research. 

And I firmly believe that is why I am alive today.

I routinely tell people who have just been diagnosed with cancer, “Be glad you are living in these times.”

We’ve come so far from the days when folks were afraid to say “cancer” out loud (they called it “the big C”), we’ve evolved our approach from fear to fight. And now any diagnosis is not necessarily a death sentence.

It would have been for me a decade or two ago. But, thanks to research, the medical profession has expanded their tools to battle all types of cancer. When I was diagnosed with an extremely rare form of lymphoma six years ago, doctors knew exactly how to treat it, with a specific treatment plan and a specific type of chemo.

They have made leaps and bounds in dealing with the effects of chemotherapy and have a variety of anti-nausea drugs to pick from. Many tolerate the treatment well. While it’s still difficult, it doesn’t have to be a life-halting treatment. I know a friend who continued to work during her treatment and never let on to coworkers that she was battling cancer.

And when my cancer returned a year after I thought it was gone, my oncologists knew exactly which protocol to use, preparing me for a stem cell transplant, which

my lead doctor said was my “only hope for a cure.”

A nurse later expressed surprise that he had used that “c” word. I clung to that.

Three years after that transplant, I am cancer free. Many friends have made donations to Stand Up To Cancer in my name, have raised money in my honor through the American Cancer Society’s annual Relay for Life, or have contributed to the Leukemia & Lymphoma Society at my urging.

Ironically, I got involved with the LLS years ago, when a friend of mine died of lymphoma and my father was diagnosed as well. (He, I’m happy to say, has a non-aggressive form of non-Hodgkins lymphoma and is living an active life 14 years after his diagnosis.) I contributed to friends who have run the LLS annual marathon over the years.

I became chairman of my neighborhood effort to raise money during LLS’s annual fundraising drive.

When I became sick with lymphoma, I was too ill to perform my chair duties.

But our family continued to make donations to LLS. And to the American Cancer Society as friends and relatives continue to Relay for Life. Two years, I walked the survivors lap to kick off the race in our local Relay, but I also raised money. 

I’m not trying to pat myself on the back, but to underline the importance of giving what you can and continuing to give. Perhaps someday you will be the beneficiary of miraculous strides in the cancer wars.

Research is vital to fighting this horrible disease. For my non-Hodgkins lymphoma, the LLS  spent $16 million out of the $72 million spend last fiscal year total on research. Over the years, this research has helped develop new and better chemotherapy drugs. One of those was Rituxan for use on non-Hodgkins lymphoma, a drug that was part of my chemo cocktail. The society says that drug alone has raised the survival rates to double what they once were for non-Hodgkin’s lymphoma patients.

To all those people before me who contributed to charities that supported this research, I thank you. While we are far from eradicating cancer, we are on the right path. I am living proof.