Cancer Survivor Celebrating My Fifth Stem Cell Birthday: Like Attending My Own Funeral

Friends and family from all over attended my mom’s memorial service 12 years ago. My husband and I brought our three kids from Arizona, my brother and his family came from Oregon. Former neighbors who had moved a few hours away more than 40 years earlier made the drive. Her best friend from her native Brooklyn, N.Y.,  came. (He had relocated to California.)  And local folks came, too.

Her close friends, parents of friends of mine, people she used to work with, people my dad used to work with. The woman who had cut her hair for decades was there as was the librarian from the branch she frequented. 

We gathered after the service in a familiar parish hall to enjoy Italian food and wine. We listened to Frank Sinatra and other music she loved. We hugged each other and talked about what a bright, wonderful presence she was in our lives. We also caught up. It had been so long since we had all seen each other. There were tears, but also laughs.

I remember thinking: too bad Mom couldn’t be here. She would have loved this.

Flash forward to September 2013. My husband threw a surprise party for my Fifth Stem Cell Transplant birthday. It was such a monumental surprise -- full of joy and happiness and dear, dear people. All to honor me!

As I told a friend on the phone a few days later: It was like being at my own funeral.

I highly recommend it. 

When I entered the room where my party was, the first thing I saw was a large group of people standing taking pictures. I thought we had entered somebody’s party. I told my husband, “They are taking pictures of something.”

A nanosecond later, I said. “They’re taking pictures of us!”

I guess they yelled surprise. I think they applauded. Then I began to focus on the faces. I saw my son, who I thought was working. Sprinkled among dear faces of family and friends from my town, I saw relatives from Arizona, my former neighbors from Phoenix, my friends who live in South Carolina, childhood friends from my hometown, Santa Rosa, Calif. 

As I looked from face to face, I realized they were celebrating me. My crawl back from the depths of cancer hell, my brief descent back into it and my successful bone marrow transplant, called the first day of my new life. Five years cancer-free is a huge milestone for me. My husband had been secretly arranging this gala for months.

And, no, I didn’t suspect a thing. Anyone who was there can speak to the pure shock I was in for hours. But it was a happy shock.

Among the 60 plus people at the party were friends and family from far and wide, several of my local book club buddies, exercise friends from the senior center (and the teacher), a roommate from my days more than 30 years ago at the Tucson Citizen newspaper. Those who couldn’t attend sent me touching cards.

It occurred to me as I surveyed this beautiful tableau: These people truly make up “the fabric of my life.”  

They all gathered to celebrate my life and to show how much they loved me. Those who wrote cards didn’t just sign their names. They said how much they treasured having me in their life, how much I inspire them with my courage and strength and positive outlook even through the toughest times.

They said the types of things people say at someone’s funeral.

Only they told it directly to me.

It made me think about some of the newer friends I’ve made since moving to southern California 10 years ago. I arrived here knowing exactly one family. Today I have wonderful friends, some of whom supported me through my illness and recovery and others who met me later but who continue to enrich my life. 

My mother had a rule.  She said if you speak highly of someone to others, you should also tell it directly to the person. 

After the party, I found myself doing that a lot. I told those who had attended (or wanted to attend) how much they mean to me, how lucky I am to have each of them in my life.

As I said, I highly recommend such an experience. You don’t have to sponsor a big, surprise bash. Just getting together to honor someone -- because you really mean it, not just because you have to -- will be something that person won’t forget.

If you can’t do that, take a moment to tell them what they mean to you.

It puts a tear in my eye and a smile on my face just remembering that minute when I looked around and recognized those faces. It was hands down one of the best days of my life. It was a magical night.

And I was here to enjoy it.

Yippee (Continued)! More Thumbs Up to a Few Places that Accommodate the Disabled

Enough griping. Time for three more thumbs up to places that have made my disabled life a bit easier recently.

Any business that has built-in entry mats

This a catch-all. I’m sure there are plenty. Two buildings I frequent locally --  one dental, one medical -- were built a few years ago by an incredibly considerate company.

The mats at all the entrances are built into the flooring, not just placed on top of it. It is a subtle, attractive way to accommodate the disabled. I don’t know if that’s why they did it, but I like to think it is.  

I say a silent hallelujah every time I enter one of those buildings. It might not seem like much to able-bodied people, but it makes me happy every time I travel over them. The alternatives, which are way more plentiful, are rugs that I am always curling up and getting my walker glides stuck under.

When these rugs or mats are outside and inside an entry, it takes quite an effort to pick up my walker to get over the first one without screwing it up, then navigate the metal threshold barrier (which sometimes traps my walker glides and rips them off), then the mat inside the door.

Built-in rug

My fitness center has three of these annoying rugs before I can check in at the front desk. My post office has two of them. Because I can’t bend down to fix them, I am often leaving disheveled rugs in my wake. Probably a safety hazard.

Goldstar, the online entertainment discount company

A friend of mine, knowing how I enjoy  live theater and concerts (and also knowing I love a discount), suggested I check out the offerings on Goldstar.

It’s a national company that says it wants to encourage more people to take advantage of entertainment offerings by working with providers to make tickets more affordable.

Then I remembered I am disabled. (Believe it or not, I forget sometimes. Like the time I bought a two-pack of umbrellas from Costco only to realize once I got home there is no way I could hold an umbrella.) And I’ve had such problems finding accommodating venues that I gave up before I explored Goldstar any further. Sure, the tickets might be cheap but would I be able to attend with my walker or wheelchair? Or would the seats be in the inaccessible rafters?

Not worth the trouble or the gamble, I thought.

But then my daughter ordered half-price play tickets for the both of us, using Goldstar’s instructions to email them right away to specify any special needs requests.  Goldstar said they would get in touch with the venue to seek accommodations.

On their website explaining this policy, Goldstar goes on to say, “Not all venues offer special-needs seating, but we're typically able to work it out, and we'll certainly do our best to make it happen.”

And they did. 

Which leads me to thumbs up for the venue.

 La Mirada Theatre for the Performing Arts

This beautiful theater in La Mirada, California is extremely accommodating for the disabled, from parking to seats to restrooms.

Disabled parking is plentiful, close and free. The entryway to the theater is very accessible and flat. I note both of these accommodations because I've been to many a restaurant or theater where it is quite a hike from the parking spot to the entrance or an uphill climb to even get in the door. It was a relief to be able to park close by and walk in easily.

Inside I found couches in the lobby and comfy seating in the lounge area where you can wait before the curtains go up. Again, I've been in places with only uncomfortable metal or plastic seating while you are awaiting entrance to the theater. The La Mirada Theatre even had a lit fireplace, adding to the homey feel. Beverages come with lids on them so you can take them safely into the theater.  

My daughter had requested aisle seats for me in my walker and her. She wrote that I couldn't go down stairs. After getting our tickets at will-call, we sat at  perfect floor-level seats at the end of a long aisle. 

At intermission, when people were swarming to the restroom, an attendant inside directed a steady line of women to available stalls. And she saved the disabled stall only for handicapped people. Yay.

It made the experience fast and easy for everyone.  And the play was fantastic.

Disabled Parking Placards II: More You Should Know About Cards, Parking Spaces and the Law

Here’s a scenario that’s becoming more and more common. I pull into a parking lot at one of my favorite (insert type of establishment). The (insert small number) disabled parking spots are taken.

I shake my fist.

“Darn you, handicapped people! Why is everyone out today?”

In the old days, maybe there were enough handicapped parking spaces to go around. Maybe handicapped people just stayed home. Since I joined the disabled community more than seven years ago, this much has become apparent: There aren’t enough spaces and there are way too many cheaters.

As I’ve stated in another blog post, the number of disabled people is going to escalate in record numbers. Nearly 80 million baby boomers began turning 65 two years ago. They will be joined in disability by a large number of injured war veterans.  Not content to stay at home as they decline in their physical abilities, these folks will use mobility aids to shop, dine, meet friends and go to appointments. They are going to be needing those parking spots.

Here’s how to improve things:

Don’t park in the handicapped spaces unless you or your passenger is disabled.

Blatant violations of these are common. In the recent past, I’ve seen an Edible Arrangement deliveryman using one of the spots to unload and distribute his fruit goodies at a dental office complex. One of my disabled friends spotted an armored car parked sideways in front of a Wells Fargo bank, making disabled spaces unusable -- a regular occurrence there, she says.  One LA resident took a photo on Memorial Day of a pickup towing a boat parked across all the disabled spots at a Burger King.

Memorial Day cheater

When a disabled Arizona woman with her family tried to park in a handicapped

spot at an A’s/Dodgers spring training game this year in Phoenix, the security guard told her the area was being saved for a team bus. Her husband let her out in her wheelchair and parked in another spot far away. At the end of the game, she noticed cars parked in the restricted area without disabled placards or plates. She snapped a photo as a Dodger player, surrounded by fans, got in one of the cars and drove away. The woman complained to the supervisor at the lot, then the city, who blamed a misinformed security guard. She got swift replies and apologies from the city, the mayor’s office and the facility manager who told her “the A’s policy is to hold all marked spots for patrons with disabled placards.” He assured her that before next year’s spring training, he would make sure the stadium staff knew not to let this happen again. 

Perhaps we could sign the rest of the world up for training in attitude adjustment.  Because, security guard or not, the Dodger did not think it was wrong to park in those spots. And clearly, lots of other people agree.

I see them not only parking in the spots, but in the crosshatched spaces in between the blue spots. These are not “free” areas: they are areas required by disabled people in order to use their wheelchairs or walkers.

Despite disabled only blue signs and the crosshatched spaces often stating NO PARKING, many motorists who are not disabled brazenly violate the rules. In their minds, parking for a couple of minutes in one of those areas is OK.

IT’S NOT.

A few months ago, my husband and I were meeting family at a restaurant. It was in a strip mall and there were two disabled places in front of the establishment. A female driver with no disabled placard had parked her wide Ford Excusion in the crosshatches, so the vehicle was spilling into both blue spaces and we couldn’t park in either one. She was sitting in her car, the motor running and the windows rolled up while someone went to get takeout at a different restaurant. We drove slowly around the parking lot, giving her ample time to leave. After several minutes, my husband stopped our car, got out and asked her to please leave as she was blocking all the spaces.

She politely moved the car. Into a disabled space. We took the other one.

Crosshatched lines clearly state "No Parking"

Had I been driving myself, I could not have done what my husband did BECAUSE I AM DISABLED. I would have had to park far away in a regular space, cursing her under my breath, or drove around until the woman and her family finally got their food.

Don’t use a placard unless it’s yours. 

This, too, is a growing problem. A Los Angeles Times article in May 2011 said  abuse of handicapped placards is increasingly common in California. When law enforcement conduct sting operations, one DMV official estimated that 30 to 40 percent of the placards are being used illegally.

There are consequences. In California, misusing a disabled placard is a misdemeanor and punishable by a fine of up to $4,200, imprisonment in county jail for up to six months, or both.

Examples of placard abuse include: loaning your placard to friends or family members (disabled or not), using a placard when the person it was issued to is not in your vehicle, and using a dead person's placard.

Why do these cheaters abuse placards? Sometimes it's to get a closer parking spot. Other times -- and this is a common problem in certain areas of Los Angeles -- it's to score free metered parking. (Yes, that is one benefit of disabled placard here: you don't have to pay for public parking meters.)

Change the requirement for the distribution of placards.

In California, a disabled person must have a medical professional's signature to qualify for a temporary (six months) red or a permanent blue disabled placard.

In the eyes of the state, permanent means two years. A few months before your placard expires, a new one (free of charge) with an expiration date in two years will show up in your mailbox. No questions asked.

It's an invitation for abuse.

Dodger pulling out of a spring training spot
Photo by Stefany Scovell

If the disabled person gets better or dies, the new placard still arrives. I have a permanent placard and while I enjoy the simplicity of this system, I think it is partially responsible for all the cheaters using disabled placards. The state should require another medical signature verifying a permanent disability every few years.

A note that arrived with my placard this year said: "If the placard owner is no longer at this address or the placard owner is deceased, the placard must be returned to your local DMV office or mailed to the Department of Motor Vehicles."

Yeah, right. I wonder how many placards the DMV receives each year. With all the stuff survivors have to do after the death of a loved one, heading to the nearest DMV office or post office to return the placard cannot rank high on anyone's list. The natural thing to do, if you are an honest person, would be to throw it away.

Or, if you are someone who think's it's OK to screw over disabled people, keep using it until it expires. A new one will magically appear in your mailbox every two years.

How to Guide Your Family Through Tough Times after the Bombshell of a Cancer Diagnosis

I am publishing a post from a guest blogger: Cameron Von St. James. He tells an inspirational story of dealing with his wife's grim cancer diagnosis, learning to become a caregiver and keeping up the fight. Because my blog is designed to inspire and educate people, I welcome his contribution.

There are some dates in your life that are burned into your memory forever. Some of these dates, like my wedding date and my daughter's birthday, are happy memories. However, I will also never forget November 21, 2005 for different reasons. On that memorable date, my wife Heather and I were informed that she was suffering from malignant pleural mesothelioma.  As soon as she became a cancer patient, I became a caregiver to her.

Right before we received the diagnosis, we were planning ways to make the holidays special for our daughter, Lily. She was only 3 months old, and we were looking forward to spending our first Christmas together in Minnesota as a family of three. Once the doctor informed us of Heather's diagnosis, my caregiving duties  started right away. Heather's form of cancer was very serious (her life expectancy was 3 to 12 months) so we needed to immediately make some treatment decisions.  According to our doctor, we could choose to seek treatment locally, visit a regional hospital without an official mesothelioma treatment facility or make an appointment with a respected mesothelioma specialist in Boston.

I looked at Heather to get her input, and I will never forget the look on her face. She was completely in shock and disbelief. I knew that I needed to step up and make the decision when she could not. I let the doctor know that we wanted to go to Boston for treatment as soon as possible.

The important decisions did not stop once we chose a physician. It seemed like every day was filled with large and small decisions that needed to be made right away. Our lives had been scheduled and organized before the cancer diagnosis. Heather and I both worked full-time, and we would come home and spend the evenings with Lily. Mesothelioma strained our family financially because Heather had to quit her job right away. I was only able to work part time as I cared for Heather and Lily. Since we had decided to seek treatment in Boston, my days were spent trying to work, take care of Lily, handle the household duties and making travel plans to support my wife.

Although the physical tasks were difficult, the emotional strain was even more overwhelming. I was terrified of the possibility of losing my wife and having to raise my daughter alone. There were some days that I would just collapse in tears on the kitchen floor. I felt a whole range of emotions from anger to devastation. Feeling these emotions was not wrong, but I had to learn how to deal with them in a constructive manner.

Heather, Lily and Cameron Von St. James

The things I was feeling were overwhelming, but I knew that I had to get it together for Heather and Lily. I refused to let myself wallow in my feelings of helplessness.

One of the things that helped me the most was the fact that Heather and I were surrounded by a wonderful support system. Our family and friends were invaluable, and there were even complete strangers who stepped up to offer assistance. People gave assistance to us in a myriad of different ways. The financial help allowed us to pay our bills during the tight months, and it was wonderful to know that Lily was being taken care of by other people who volunteered to take over some of my caregiving duties.

If you are ever called upon to be a caregiver, you will quickly find out that it is not an easy task. I do not say this to discourage people, but I want them to understand what to expect. No human being can do everything on his or her own, so do not be afraid to learn how to ask for help. When people volunteer to help your family, let them know a few specific ways that they can assist you.  Above all else, never give up hope for a better future for your family.

It took a long time for our lives to settle down. Heather's treatment plan included   mesothelioma surgery, radiation and chemotherapy. However, it is now seven years after her initial diagnosis, and I am thrilled to say that she remains cancer free.

I could never have imagined the journey that my family would be forced to endure, but we all learned so much through our situation. I have always been a stubborn person, and I learned to use this stubbornness in a positive way to advocate for my wife. I was able to change my life by going back to school for my Information Technology degree and acquiring a better job to help my family.

Heather and I also learned in a very real way how precious life is. We do not take the moments that we get to spend with each other and with Lily for granted. We know how very blessed we are, and we wish to share our story of hope with all those who are currently fighting cancer today, in the hope that it may inspire them to never give up, and to always keep fighting for the ones they love. 

The Hairy Truth: What I Learned about Going Bald after Chemotherapy for Cancer

These days, doctors pretty much know which types of chemotherapy will leave you bald and which do not. But realizing you are going to have to say goodbye to your tresses doesn’t make it any easier.

I was feeling pretty secure when 15 months of strong chemotherapy left my hair intact. But the new drug cocktail enlisted to battle my returning cancer immediately took its toll. Within two weeks my hair was history.

After first round of chemo

Arrrgh.

I know, I know, the main thing I should have been concentrating on was getting better; killing those cancer cells so I could lengthen my life. And I was. But it was hard not to think about my bald head. Because it was there, every day... for months.

And while my sweet friends told me I had a good head for baldness, I disagreed. When I looked in the mirror, I didn’t see a gorgeous shiny smooth head like Charles Barkley’s. There was a four-inch scar at the front of my head. Next to it were many lumps from the brain biopsy performed to identify the source of my mysterious illness, which turned out to be lymphoma.

Here a few things I wish I had known about losing your hair after chemotherapy:

Get rid of it once the fallout has begun. 

I prolonged this process and wasted money, time and sweep-up efforts.

About a week after I began my second round of chemo treatments, I noticed hair coming out in my hands.

Two weeks after second chemo

So I made an appointment with my hair stylist to get it cut into what I called my Jamie Lee Curtis look. As the hairdresser was trimming, he found more tufts coming out.

“Yikes,” I said. But I should have said, “Shave it all off.”

For about a week, I resembled a hairy version of Pig-Pen, the Peanuts character who always gave off a cloud of dust. My Jamie Lee tresses were falling out everywhere: the floor, pillow, my bed and bathroom sink. It was gross.

So I implored my husband to trim my head with an electric razor. Gone was the choppy look but my hair was still visible and spotty. Not too attractive. And it was still messy.

The next time we went to a medical appointment, I made a detour to a walk-in haircut place and asked for a complete shave. 

Shop online or at cancer specialty stores for attractive caps and scarves.

I wore a baseball cap right after being shaved bald, but I was ill-prepared for the challenges of covering my head. I learned to love the feel and convenience of cotton caps: they didn’t move around or cut into my head when I was lying down (which was a lot). 

I found these at my hospital’s gift shop devoted to cancer patients. It had the best selection of caps and beautiful scarves to wear on my head. Another specialty shop where I made more purchases was near a local hospital, featuring wigs, scarves and caps for cancer patients.

I’ve since learned that you can save money (and energy) and get a wider selection from online sites. An internet search for cancer hats will bring you to sites like Hats for You, Topsy Turban and Hats with Heart that offer plenty of styles, colors and fabrics.

I did not opt for a wig. Everyone told me they were hot and itchy and I didn’t really have any place to go where a comfortable cap or cute scarf would not suffice.

It will be months after you stop your chemo before your hair will grow to a length where you feel confident not wearing a hat. 

Hair grows back. I was told that over and over by my doctors.

But I wanted to know one thing: When?

Bald with cute fall scarf

After my second round of chemo, in preparation for my stem cell transplant, I had to have total-body irradiation twice a day for four days. The radiologist had told me the treatment would make me lose myhair. 

“I’ve already lost it,” I told him, pointing to my stylish cotton cap.

No, he said, ALL of it.

And I did.

When the only hair on my body was one eyebrow on the left side and two on the right, I looked weird but didn’t cut them. Three hairs were something.

I wondered when the rest were coming back.

After my bone marrow transplant was successful, I made frequent visits back to the doctor to check on my progress.

Fortunately, I was progressing slowly. The mouth sores were fading. My immune system was getting back to normal. But I asked the doctor when my hair would start coming in.

“It’ll grow back,” he said. 

“I know,” I said. “But when?”

He couldn’t say. Nor could a second doctor I asked. I told a nurse I wanted to know specifically because I wondered if I should invest in some scarves or hats in fall/winter colors. My summer palette wouldn’t work in the cooler months.

Yes, she said, buy cold-month colors.

And so I did, purchasing a few more scarves in gorgeous fall prints and even a red fleece cap that I wore for Christmas.

For the record, it was two months after my last chemotherapy session that I noticed teensy hairs coming out of my head. In another month, I proudly took off my Christmas hat at the family gathering to show them off. They were almost imperceptible. I had to stand in the sunlight and you had to look at a certain angle and maybe rub my head and then you could see them.

I was elated. It was a visible sign of new life. 

Six weeks later, I went capless at a public gathering, my neighbor’s Super Bowl party. And it was another few months before I lost the hats entirely.

Your “new” hair, different from your old hair, can be treated with the miracle of beauty products.

Heavy on the salt

Everyone told me my post-cancer hair might be a different texture or color. Happy to have my hair back, I found the various states amusing.  Originally a dark brown with some gray, my new hair grew in a color I called salt and pepper, heavy on the salt. 

My new eyebrows and lashes had the same color scheme. Major tip to women facing the same thing: We all know about mascara for eyelashes, but there is a fabulous invention called eyebrow mascara. Anastasia  and Blinc are brands that help my Santa brows disappear.

Matt & Laura Christmas 2012

The texture of my hair changed month to month. It was naturally curly my whole life. It first came back as sort of thick and kinky. I called it my mini-fro.  Then all the kinks relaxed and it was straight as can be. Now, nearly five years after my last chemo treatment, it is close to the texture and curl that it used to have. And miraculously (wink-wink) it's close to its original color.