Tuesday, June 28, 2011

What to Get Someone in the Hospital: A Soft, Reliable Friend

I couldn’t have made it this far in my battle against cancer without my husband, my kids, my family and friends.
Or Bunny.
Through my terrifying journey, he has been with me.
And while I appreciated the prayers, cards, emails, flowers, calls and visits I received, I have a special place in my heart for Bunny. Like me, he’s a little damaged -- but he’s still here. I sleep with my arm around him every night.
If you are wondering what to get someone in the hospital or how to help a cancer patient, consider a stuffed animal like a Pillow Pet, a huggable critter that doubles as a pillow. Or a similar soft toy would do. Pillows are a nice homey touch  -- I got several -- but there’s something about a sweet, soft face that makes you feel better.
Bunny was an accidental pal.
A friend and her son walked into my hospital room in February 2006 when I was sick and getting sicker. Doctors weren’t sure of a diagnosis and the prognosis was murky. They brought me a get well balloon and attached was a stuffed rabbit. When the balloon deflated, I had someone cut the string off. And I kept Bunny. 
He was a pale yellow, soft friend with magenta feet and long, floppy ears. Now, he is a faded version of his original self. He sits slouched, about eight inches tall. He has a dusty pink nose, no mouth and his left eye is half gone.
I didn’t know when I first got him that I would remain bedridden in hospitals and rehabilitation centers for more than four months. Or that I would then undergo a  chemotherapy regimen that involved a rotation of one week of hospitalization and three weeks at home for another year. Later, I would have more weeks in the hospital for surgeries, more chemo and a bone marrow transplant.
Bunny came with me to every new hospital bed.
Before I got sick, I was in the habit of sleeping on my side and hugging a pillow. When a brain tumor rendered me paraplegic, I couldn’t turn to my side without help. And I required many pillows to keep me from rolling back once I had been placed on my side. I had to prop up my booted feet with additional pillows so they wouldn’t flop to the side. Upon checking into a room, I always requested more pillows. Hospital pillows range in thickness from OK to barely there; and in softness from not to not.
But I always had Bunny. He was a comfortable pillow to hug when I was on my side, an extra soft boost behind my head. He was a ledge to rest my arm on when I couldn’t bend it. He was with me in the middle of hundreds of nights when I was alone. He accompanied me to in-hospital scans in what seemed from my gurney like cold, metallic basements.
The hospital staff grew attached to him. Everybody commented on him. Some thought he was Eeyore, Winnie-the-Pooh’s donkey friend. Others thought he was a Beatrix Potter rabbit.
They would ask his name and seemed disappointed when I told them. I was too sick to be more creative. Over the months, nurses learned his name and would stop by specifically to see if I had brought Bunny. Of course I had. 
Five years ago, I was released from the hospital, using a wheelchair. My husband threw Bunny in the car as we drove my son to college. He made an excellent travel pillow and I have brought him with me to every trip and hospital stay since.
I even got permission to clean him and bring him to my month-long hospitalization for a stem cell transplant three years ago. (Because a person’s natural immune system is wiped out during the procedure, doctors are careful about what’s allowed in the room.)
A few years ago, I began noticing advertisements for Pillow Pets. A California mother invented the huggable animals as a way for children to find comfort from their stuffed buddies around the clock.
They reminded me of Bunny.
Any child would love them, but sick or bedridden people of any age would especially appreciate them or something like them. This year, a 7-year-old cancer patient from Indiana started a drive to provide one for every patient in his local children’s hospital, donating more than 2,000 pets to sick kids.
A few years ago, the friend who gave him to me came by my house. Bunny was in his spot next to me in my at-home hospital bed.
She didn’t recognize the worn, little rabbit behind my head.
“That’s the same bunny?” she said.
Yep, I told her. He’s been with me all along.

Wednesday, June 22, 2011

The Human Touch: Connecting with Stem Cell Transplant Survivors

My friend Sue recently contacted me and said a woman she knew had been diagnosed with multiple myeloma  and was facing a stem cell transplant. She knew that I had survived a similar transplant three years ago as part of a lengthy battle against my lymphoma, another type of blood cancer.
She asked for suggestions for how she could help both the patient and her husband. It's a question I commonly get: how to help a cancer patient?  And this one had added specificity: what if the patient is also facing a stem cell transplant?I gave her my two cents on a few things she could do, routine things like offering to bring them a meal, help with laundry, do their grocery shopping. I also said what they might need depends on the stage of the treatment.

I told Sue she could tell her friend that medicine is making great strides with the stem cell program. A study this week, discussed in the myeloma treatment website Cure Talk, reports promising results for patients who undergo transplants.
There are plenty of studies that are encouraging to transplant candidates. But what I found most valuable -- and what I emphasized to my friend -- was the importance of speaking to survivors.
I found them by word of mouth. All my friends and family members were shocked, as was I, that a transplant was needed to continue to fight my cancer. I had never known anyone who had undergone one. But once news got around, I began to hear from friends who knew someone who had survived a bone marrow AKA stem cell transplant. 
I asked them if they would contact each of the survivors, three in all, to see if they would mind talking to me. I had lengthy phone conversations with two men and a woman, total strangers, about what I might expect.
After those calls, I was still apprehensive about a process that can take four weeks in the hospital and is designed to bring you close to death. But I was also encouraged. 
These were people who had lived through the ordeal and had come out the other side OK. 
I advised Sue to encourage her friend to seek out others who have had the procedure. I offered my services if she wants to hear my story.  I recommended the friend ask her doctor or nurse for other ideas.
Online resources are available to match transplant patients with survivors. The Bone Marrow Transplant Support group  holds three online chats a week so patients can have questions answered. And the Leukemia and Lymphoma Society
 arranges telephone calls  for patients to talk with survivors who have faced the same type of cancer, including myeloma.
The day in September 2008 that I checked into UCLA hospital to begin the transplant procedure, a pretty, energetic young lady swept into my room. She said she was returning a book to the unit and had asked if there were any new patients on the ward. She said she was a cancer survivor who had a transplant there years ago.  She told me it was not easy. “I had every bad complication,” she said.
But today, she said, beaming, she is doing great. I smiled weakly back at her from my hospital bed, wearing a cotton cap over my bald head. She ran her hands through her thick, long hair. “And this is my own hair!”
That visit from a bubbly survivor was worth more than any info I could find in an online study. It was the personification of hope.

Monday, June 20, 2011

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.

Friday, June 17, 2011

Sweatin' with the Oldies and Disabled in my Senior Exercise Class

Today I went to my exercise class.
I’ve been going religiously since January. It’s a habit that’s been easy to fall into.
For months, maybe years, I’d been seeing a notice in the local paper about “functional fitness” classes at the local senior center. It included a one-hour low impact class and if you weren’t ready for that, a 30-minute chair exercise class. Anyone “50 plus” could join. While I don’t consider myself a senior, I was definitely eligible.
Before my cancer came back three years ago, I belonged to the YMCA, gleefully  jumping and jogging (something I can’t do on land) in an aquatic class for arthritic and challenged adults. And when I couldn’t make that class, I did enjoy the 30-minute chair class next door. It was tough and everyone but me could stand up without aid. 
But when I got sick again, I had to quit the Y. After more chemotherapy and a bone marrow transplant, I was exercising at home for years. I decided to branch out.
I am so glad I did. Three times a week, I go to the senior center, twice for the chair class: cost $1, and, recently, once a week to the low-impact class, $3.
I absolutely love it.
In addition to burning calories, I’ve gained some precious friends and a new vision of the golden years.
I look forward to coming three times a week. I miss my old buddies when I can’t make it. And I worry about them when they’re absent.
When I returned from my first class, my son asked me if it was depressing and if “it smelled like death.”
Far from it.
By 8:30 a.m., the drop-in center is a vibrant place. Coffee is brewing, sweet breakfast treats are set out. Men play pool. Other fellows sit on the porch and chat. One volunteer staffs the “trips” desk, Another, in her 90s, buzzes about early each morning organizing silverware, cups, tables and chairs for lunch. On Fridays, a senior band plays at lunchtime in the same room where we exercise. The guys wear fancy clothes and start hauling in their instruments while we are winding up our class, often with a dance step or flirtatious wink as they walk in.
I am one of the youngest people in my chair class. It numbers 30 to 40 people, mostly women. Many are as disabled as I am, some better, some worse. Many have walkers, a few have canes and some are in wheelchairs. I know most people’s names and some caregivers’ names. And I am greeted by name when I arrive.

The women I have met in the chair class are the opposite of Maxine, the crabby old gal of Hallmark card fame. They get up, get dressed up (no sweats for these chicks), some put on lipstick and pearls. Some drive with friends or husbands, some ride public transportation, several come with their paid caregivers. And they have smiles on their faces.
I made a friend the first day. Gloria, 88, is a lovely lady with the sweetest, friendliest face. While she still misses her late husband desperately, she said she has made a choice to have a positive outlook. “Why not?” she says.
So do many others, including Eunice, who at age 90 is just a gorgeous lady with a permanent welcoming smile. I worried about her when she was absent for a week, but when she returned, she said she’d been to Vegas.
There are greetings, hugs and handclasps before the exercise begins. Everyone  wishes each other a good morning and someone usually announces, “We made it another day!”
And that alone is a reason to smile.
This morning, my new friend Julie, closer to my age,  who was taking the low-impact class for the third time, said she loved the workout, but particularly the people. 
“Everyone is so nice!” she said.
It’s that striking. How many people view exercise as a solitary endeavor, putting in their headphones and gazing at the TV while they walk or run on the treadmill? How many dread going to the gym? How many get to know the folks they work out with?
I’ll take my senior center exercise class any day. It’s fun and uplifting and heartwarming.
And, oh yeah, it’s good exercise.

Thursday, June 16, 2011

Home Sweet Home after Months in Rehabilitation and Physical Therapy

When I heard the news that Rep. Gabrielle Giffords was coming home, it brought back memories. Like Gabby, I was released to my home nearly five months after the day I entered the hospital, much of it spent in rehabilitation for a brain injury. (Hers was caused by a bullet; mine cancer.) She was released on June 15, 2011. I was released on June 14, 2006.
I know what she is going through and can relate to the struggles that await her. But I also know the indescribable joy that comes from seeing your home for the first time after months of being away in a hospital environment.
There’s no better feeling.
We have faced similar challenges. I know all of America has been with her through her trauma and recovery, but I have especially felt for her because my experiences have paralleled hers.
First, as a former resident of Tucson, I was particularly affected when I heard the news about Gabby. An alumna of the University of Arizona and the Tucson Citizen, I used to live about a mile from the grocery store where she was attacked. I used to work with one of her aides who avoided the bullets when he ducked into the store to get a coffee. As an education beat reporter, I had covered the community college where her assailant went to school. Also, I love Tucson and the fact that it was home to such a horrific tragedy hurt.
As details emerged about her recovery, I related deeply. When I read about her physical therapy, my heart ached.
In the beginning, her therapy consisted of sitting up and dangling her legs down the bed. Mine started with the exact same exercise. Paraplegic as a result of brain tumors, I couldn’t begin therapy unless two people could be found to assist me. Without a spotter in front of and behind me, I would crumple. I remember counting to 20 while dangling my legs, then, exhausted, being helped back to a prone position.
The pain was immense.
There is nothing more humbling than trying to do the most basic things that most people don’t give a thought to. I  became known as a chronic crier. The minute the physical therapist entered my room or I entered the gym, the tears would start and wouldn’t end until it was over, regardless if it was a 10 minute or 60 minute session.
“It’s not you,” I would tell the therapists when they looked puzzled.
Sometimes it was the humiliation of it all. Sometimes it was to celebrate a teeny, tiny thing. Sometimes it was just because I felt so miserable.
The therapists learned to not take it personally and come armed with tissue boxes.
So when I finally was released from rehab on a summer’s day, like Gabby, I had made great strides. And like her, I had far to go. I still couldn’t walk and had to be lifted into a wheelchair or commode.
Still, I was overwhelmed with joy as my husband turned the car up the street toward our house. My eyes filled with tears. The street looked so good, the trees so green. Our house, so lovely.
And when I entered the door, I remember being almost bowled over by the beauty. Such wonderful colors (after months of hospital white). Such gorgeous flowers out the window in our backyard. And I specifically remember the musical sound of birds chirping. Most folks don’t take note of that, it’s background noise. But when you haven’t heard a bird for nearly five months, there is nothing sweeter.
I hope Gabby takes from this experience what I have. I make a concerted effort to continue to notice and appreciate things every day that others take for granted. I don’t want to forget the gratitude that I felt the mid-June day five years ago when I entered my home.

Monday, June 13, 2011

Public Handicapped-Accessible Bathrooms are Often Challenging

On a recent Sunday, my friend was accompanying me to a public restroom on a college campus. It was a tiring journey for me, pushing my seated walker that I had selected for the outing over a variety of walking surfaces.
I don’t usually let on and I may look as though I can navigate OK with my walker, but every step is an effort. Nerve damage has wreaked havoc on my balance and my legs. I have neuropathy, so I have little feeling in my feet. I have to concentrate or I will lose my balance or trip. 
And my legs feel extremely heavy. While I walk for exercise, it’s never easy or fun. It’s as if I’m lugging around two concrete blocks.
We walked on, following the signs that led us around a corner and up the ramp to the bathroom. I noted handicapped accessible signs along the way. But when we entered the restroom, my friend pointed out that the handicapped stall was the furthest from the door. 
So I had longer to walk than those for whom walking was not a problem.
“That doesn’t seem right,” she said.
I agreed, saying that’s usually the case in public restrooms.
“Unfortunately, they didn’t consult with me when they built these bathrooms,”  I said.
I often wish someone would. 
While I’m not one of those types who make a career out of measuring doorways and railings and sinks to make sure they are ADA compliant, I welcome the resulting attention to the needs of the disabled. Unless you have mobility issues -- or you are close someone who does -- you don’t notice how difficult it is for us to navigate the most basic facilities.
While I am grateful that the Americans with Disabilities Act has tried to ensure that facilities are accessible to the disabled, the reality is there is much to be improved upon. And some of it is just common sense.
Nobody asked me, but if they had, here’s a few things I would advise to whomever is designing handicapped accessible restrooms used by the public.
Place the handicapped stalls near the front of the restrooms. It’s disheartening and sometimes disruptive to finally get to a facility and then have to walk to the very, very back (in the larger restrooms) to find the stall.

Install doors to the stalls that swing both ways. Very few restrooms have these. Do you realize how hard it is to open the door toward you while you are using a walker and have balance problems? Can you image how nearly impossible that is for someone in a wheelchair? When I was alone in a wheelchair at one of my lowest points and had to use a small stall with a open-out door (I’m having flashbacks), it seemed downright cruel.

Please place the paper towels or dryer, and soap, for that matter, near the sink. It seems logical but I’ve been in bathrooms where the sink and the towels or dryer are on opposite sides of the room. Annoying for someone in a walker. Borderline insulting for someone in a wheelchair.

Those safety bars in the stalls help a lot when they are right on the wall beside you. (My favorite are the ones on both walls.) Handicapped or infirm people really need those to sit down and get up. Some stalls I have been in have them only against the wall two feet or more away or behind the toilet itself. What’s the point? To catch me if I am catapulting to my right? Or hurling head-first into the toilet? Or are they for disabled people with freakishly long arms?

Why not install safety railings in the non-handicapped stalls? That way, if someone is in the big handicapped-accessible stall and they are, um, taking a long time, those who can collapse our walkers or are using canes can actually use another stall, knowing we’ll be able to sit and get up.