Friday, September 23, 2011

Hospital Roommate Etiquette: Rule Number Three

Ready for my third rule for being a good hospital roommate? To review, I’ve already posted my first and second rules for hospital roommate etiquette. They can easily apply to anyone finding themselves in close proximity to another patient. 
This one is a little more obscure. You wouldn’t think it would even need mentioning. But I know from experience it does.
Rule Number 3: Don’t bring live animals into your hospital bed.
Now I love cats. I always have. I know my descent into cancer hell was incredibly hard on my loved ones. But it was also traumatic on my kitty, Allie.
Allie in a bed at home 
She was essentially a one-person cat and I was her person. My family said she was beside herself when I suddenly exited the house for a four-month stay in various hospitals and rehabilitation facilities. 
Luckily, she got through it and so did I.
But never for a minute did I consider having her smuggled into my room to cheer us both up.
That’s exactly what one of my roommates did when I was beginning my life-threatening journey in a hospital rehabilitation room.
As I recall (you learn plenty about the person inches away from you), the injured woman took in kittens from the pound and fostered them until they could be adopted. An honorable cause.
But not so noble was her friends bringing three teeny weeny kittens in large socks to romp on her hospital bed.
Granted, they were adorable. Calendar material. I mean who doesn’t melt at the sight of  a kitty? 
Well, me, when I have a bunch of tubes in my arm and can barely walk to the bathroom.  And I’m supposed to be in a sterile environment.
I was present on many days at different facilities when  therapy dogs came around to meet with patients. But you had to go outside your room to see them. Patients who went said they loved being around an animal. One guy who rarely had visitors said he missed his dog at home so much, it made him feel better to just see a furry friend.
But seeing the kittens brought me no joy. I was dumbfounded at why my roomie and her friends thought this covert operation was a good idea. What if a stray hair or flea ended up in my IV tube? What if I was allergic to cats?

I am, actually. But I’m on allergy medicine at home to allow me to be around my own cat. There were times in rehab when I was on oxygen and needed breathing treatments: what I didn’t need was a fur-spurred sneezing fit.
And worse, what if I tripped over one of the kittens  while haltingly making my way to the restroom or commode. One of them actually jumped off the bed and scampered toward the doorway. My roommate’s friends nabbed him before he reached the hallway. Laughter ensued, but not from my side of the room.
Down the hallway, in a rehab center, were not only nurses and doctors, but food workers and physical therapists and folks learning to use a wheelchair or walker or cane. A runaway kitten could have been disastrous.
Those who know what I experienced in my months in the hospital might doubt this tale. But I know it happened. I have a witness.
Sure, morphine and other pain killers made me see all kinds of things. The night I entered the hospital, before they even found a room for me, I saw imaginary cats. Huge ones. Human-sized, like they were out of a Kliban cartoon.
But I didn’t mention it to anyone. I knew that the cat sitting on an (imaginary) bus bench in my room that night next to my friend Marybeth was a hallucination. 
And the same with the realistic cats that would occasionally scamper across the floor at at different hospital. I knew they were drug-induced visions, so I kept them to myself.
When the kittens came to my room, I was being visited by my friend Mary, who had flown in to be with me while doctors tried to figure out what was wrong with me. 
Months later, after I was diagnosed with lymphoma and treated and finally able to go home. Mary brought the cat incident up. "What the hell?" she said, or words to that effect.

Yes, she said, it really happened. I remember her being there and we were both in shock, beyond words, particularly when one of the kitties got loose.
I should say that she, too, is a cat lover. I’m sure we both also love baby seals and pandas and bunnies and ducks. But I really don’t want to see them in the next hospital bed.

Saturday, September 10, 2011

Happy Third Birthday to Me, Stem Cell Transplant Survivor

Today is my birthday. Well, my stem cell transplant birthday. I’m officially 3 years old, according to my new post-cancer, post-transplant vocabulary.
I started a new life on September 10, 2008, when my own baby stem cells were infused back into my disease-ravaged body. That morning, my nurse, John, arrived in my room with a wide smile on his face. 
He sang the whole “Happy Birthday” song to me, bless his heart.
I was terrified and trying to be cheerful. It’s easier for me to be upbeat now, three years out. Three years I might not have lived, were it not for the miracle of stem cell transplants (also known as bone marrow transplants).
And like any birthday, I have a meaningful ritual. It involves California Pizza Kitchen and key lime pie. I will go to my local CPK and eat some sort of pizza, then I will top it off with key lime pie -- the restaurant and the dessert are joyous markers of where I’ve been and how far I’ve come.
My actual birthday was not so happy.
After a 15-month intensive chemotherapy attack on my non-Hodgkins lymphoma, the cancer reappeared a year later. My oncologists said my only choice was a bone marrow transplant. 
I embarked on a grueling repeat chemo program and a host of more tests and scans in  preparation for the transplant. It was autologous, meaning I could contribute my own stem cells. They harvested them in a remarkable method. It was like a reverse blood transfusion where the blood came out of my body and got separated in a machine that took the baby cells and sent the rest back into my body.
The night before that occurred we were looking for a place to have dinner near the hospital. We settled on California Pizza Kitchen.
It was the first restaurant I went to on an “away pass” from my rehab center more than a year earlier after four months in a hospital bed. That day, my husband pushed me in a wheelchair to CPK for lunch. I wore a large straw hat and rhinestone-studded sunglasses my girlfriends had brought me as a gift. I had to protect my scalp -- about a quarter of it had been shaved for a brain biopsy. I was wearing a back brace that was more like a torture device, a hard Ninja Turtle-type shell that was supposed to prevent me from breaking more bones, but was almost unbearably painful.
I don’t remember what I had but I remember the sense of freedom. No doctors or nurses or beeping IV machines. My husband and I felt like we were playing hooky.
The night before my stem cell collection, we went to CPK again. This time, I was walking with a walker, my hair was completely gone from my latest round of chemo and I had shed the dreaded brace a year earlier. We split a pizza and when it came time for dessert, the waiter recommended the key lime pie. I was a huge fan of authentic key lime pie and when he said they flew in their key limes from Florida, I was sold. It tasted amazing.
In the coming weeks, I was on a schedule like the countdown for a rocket launch. Day -9, Day -8, toward Day 0, which was my transplant day, my new birthday.
My first chemo regimen, I was given an extremely powerful dose, enough, my oncologist said, to kill an elephant. Each time it was administered, I had be on a rescue drug for days until it was flushed from my system.
This time, I was hit with four days of radiation and seven times the amounts of chemo I had had before. It felt like I was run over by a steamroller. Bald, bloated and blotchy, I felt like crap the morning of my transplant. 
Laura Laughlin undergoing transplant
After John sang his song, serious technicians warmed my stem cells (which had been frozen while I was prepped for the transplant)  and hooked them up to infuse them back into my body. The little pouch of hope looked like V8 juice, I said.
Then, with a sucker in my mouth -- to prevent nausea that can come with the foul taste when the new cells are infused -- I began to cry.
“Why?” my husband asked, happy that the day was finally here.
“Because it’s so important,” I replied. “And what if it doesn’t work?”
I had tried to be upbeat during my difficult fight for life the past three years. But this seemed do or die to me. And because I had forced my doctor to tell me how often stem cells don’t engraft (attach themselves to the inside of your bone marrow and begin regeneration), I knew two or three people a year don’t survive my type of transplant performed each year at this hospital.
What if I were one of those three?
But I wasn’t.  And while it was an experience I call my second visit to hell and back, it’s one I am grateful I went through.
On my first and second birthdays, I went to our local CPK. I had a little pizza and some key lime pie.
Around that time, I was asked to speak to a friend of a friend about my experience. Also fighting lymphoma, she faced a stem cell transplant, but was deciding whether to proceed.
I told her it is definitely tough and there are no guarantees, but in my case, a month of hell had given me two years of life. If that’s all I had, it would have been worth it, I told her. 
I feel the same way this birthday. No one really knows how much time he or she has  left.
Because I won’t have cake and candles, I won’t make a wish. I am happy to be alive, sharing some pizza and pie with my loved ones.

Wednesday, September 7, 2011

Celebrating Milestones: Marking Progress in My Cancer Fight

My niece Lexi starts kindergarten today. A big accomplishment for her. 
And, in a way, for me.
She came pretty close to not having this aunt.
When she was ready to arrive on this earth, I looked like I was ready to leave it.
I was seriously ill and getting sicker. Doctors weren’t sure what was wrong with me. They suspected lymphoma, based on my symptoms, but they couldn’t find any lymphoma cells. (Without knowing specifically what type of lymphoma I had, they couldn’t treat it appropriately.)

And, boy, did they look. I had three bone marrow biopsies, at least four spinal taps, a multitude of scans over a 10-month period. They took out my spleen, thinking for sure that it would contain lymphoma cells. But no luck.
My spleen was three times the size of a healthy one and while I was getting worse and worse, it was traveling the country, from hospital to hospital and expert to expert, to see if doctors elsewhere could find what mine could not.
They were all stumped.
They treated me for CNS vasculitis, an inflammation of the blood vessels that affects the central nervous system.
Meanwhile, I was going downhill. I could barely speak or move. My doctors at the local hospital decided they had done all they could for me, including two sessions of plasmapheresis, taking all the blood out of my body and freezing it, then putting it back in. They were planning to hand me over to physicians at UCLA, but I was awaiting a bed.
On March 14, 2006, the day Lexi, my brother’s daughter, was born, I was in the intensive care unit of my local hospital. I had been hospitalized for six weeks.
I was pretty much unresponsive. I was getting huge amounts of drugs, so when I awoke I was too foggy to interact. I would open my eyes occasionally but did not seem to really connect. Doctors had told my husband that they weren’t sure if I had suffered brain damage or not, or if in fact, I would survive.
Then around 2 p.m. I awoke, barely. My husband, Matt, told me about Lexi being born. He and the nurse saw me open my eyes and my mouth instantly and smile briefly.
It was a bright moment during an incredibly grave time. It gave everyone pulling for me a glimmer of hope -- that I was still me inside and that I somehow might come through this. I did.

(The doctors gave me drugs to forget most of what I went through. But I  remember being told about Lexi being born.)
When my brother Kevin emailed a photo of my beautiful new niece, my husband printed an 8 by 10 color copy and showed it to me, I smiled and shed a tear. 

He put it on my bulletin board. The photo moved from room to room with me as I worked my way through the hospital-rehabilitation labyrinth. It continued to bring a smile to me and to others who visited my room.
While Lexi lives out of state and I don’t see her often enough, I still smile at the adorable pictures of her my brother posts on Facebook. 
And my heart is with her as she begins kindergarten.
She’s come a long way, baby. And so have I.

Friday, September 2, 2011

Disabled Parking Placards: Everything You Want to Know. Or Should.

We’ve all seen them: the blue or red parking placards for the disabled hanging from interior mirrors of vehicles.
But we can all stand to learn more about them. 
I can only speak for laws in California, because that’s where I live. Everyone should check out their own state’s laws regarding obtaining and using a parking placard for the handicapped. I’m sure the information is available online.
How to qualify
Here’s the description copied from the California Department of Motor Vehicles website:
You may qualify for a DP(Disabled Person) placard or DPplates if you have impaired mobility due to having lost use of one or more lower extremities, or both hands, or have a diagnosed disease that substantially impairs or interferes with mobility, or one who is severely disabled to be unable to move without the aid of an assistive devise. You may also qualify if you have specific, documented visual problems, including lower-vision or partial-sightedness.
I know, it reads like a partially-sighted person composed that, but you get the idea.
How to apply for one
Start with your doctor, nurse practitioner or physician’s assistant. They must sign off on the paperwork and many have forms in the office.  Alternatively, you can print the form online and bring it in with you. 

Don’t be afraid to request one from your health provider. It may not be on his or her priority list but it may be on yours. I needed one almost immediately when cancer struck, but even if you have a temporary affliction, it might be worth getting a temporary placard.
You can either mail in the form or bring it to the DMV and they’ll issue you a placard over the counter.
Types of placards
In California there are three basic types you can apply for: the red temporary placard, the blue permanent placard or the disabled person license plates. The red one is good for six months (and costs $6) and then you have to reapply with another form signed by a doctor.
The permanent placard is free and is good for two years. You do not have to reapply. One will be sent to you before your other one expires.
If you get the disabled license plates (also free), you need to surrender your current plates. The downside of that is that you give up the portability of the placard: You can put it in any car in which you are traveling, not only the one with the plates on it.
What they allow you to do
Everyone knows the disabled placards let you park in a space, usually blue, with the wheelchair symbol designating it as a handicapped spot.
You can also park in any metered street spot without paying at all. (Yippee. One teeny tiny thing that’s good about being handicapped.)
You can also park in any green zone without regard to time.
You CANNOT park where the curbs are white, yellow or red. A security guard I was talking to recently asked me if I realized I could park in any red zone. No, I said. He said his mom has a handicapped placard and that it is indeed true. Actually, he said, you can park anywhere.
No, you can't.
The paperwork that comes with the placard specifically spells out where you can and cannot park. Red, yellow and white curbs are forbidden.
Other benefits
If you have a disabled placard, a service station attendant must, on request, refuel your gas at the self-serve rate except if that station has only one employee on duty at the moment.
This law is pretty much useless to me.
I usually see only one employee at a station but can’t really tell from my driver’s seat how many people are on duty.
To inquire how many folks are on duty or to ask for help filling your tank you need to push a button that it is on the pump.
If I get all the way out of my car, collapse my walker so I can fit between the pump and my vehicle, and am positioned to reach the help button, I may as well fill‘er up myself. If I have trouble, which I do sometimes, there is usually a kind stranger  I can ask for help.
Another benefit, at least here in Los Angeles: valet parking companies will usually give you a discount or waive the rate if you hang your placard while you pull in. You still need to tip them, of course. 
What not to do
Do NOT hang a placard from your rearview mirror while you are driving around. It's to be used only when you are parking. Mine says right on it “Parking Placard”. It also says across the top: REMOVE FROM MIRROR BEFORE DRIVING VEHICLE.
But apparently many people don’t notice that. Every day I see motorists who are driving with their blue or red placard hanging in the middle of the window.
Do you realize it then becomes more of a handicap because it limits your field of vision?
It reminds me of my sons, who leave their Coachella concert parking hangers on their mirrors because it shows other drivers they are Coachella alums. But disabled folks don’t need to brag about their limitations. And we certainly don’t need to give each other mobile high fives because we are all in the same club.
Last, do not loan out your placard to others. Or use one if you are not disabled. It's illegal, immoral and inexcusable.