Friday, January 7, 2022

My Blog is 10 Years Old. What it’s Meant, How it’s Going and How I’m Doing

My brother recently sent me a picture of my dad and me, taken in 2011. I am wearing a necklace given by a friend as a semi-gag gift. It’s a little pink computer on a chain, in celebration of the publication of my blog.

I’m not good with dates, and I couldn’t tell you if asked when I started this blog, but I knew I only wore that necklace on one trip and the picture was taken in 2011.

And that is when I realized my blog is 10 years old.

Wow.


My dad Frank Diamond and me in 2011

   

When I was going through torturous years fighting my rare non-Hodgkins lymphoma, friends suggested I write about my experiences.  Good idea, I said. But first I have to be able to sit up at the computer without being in horrible pain. I deflected all suggestions about writing while lying in bed or using a dictation program to compose. My three decades in journalism taught me to create while I type sitting up and I simply couldn’t break the habit.

So I took an online class on how to start a blog. Ha! my-tech-friendly kids said. You do not have to take a class to publish a blog. Well, I did. 

Our instructor made us sign up for Facebook and Twitter,  which I had been reluctant to do. She helped us customize our websites and focus on our missions. We had several writing assignments a week and we improved though feedback. So when we were ready to publish, we had several posts ready to share.

After six years of living my new disabled life, I had plenty of material. I had spent nearly five months straight in a hospital bed, finished a 15-month regimen of intense chemotherapy (enough, my doctor said, to kill an elephant), faced temporary paralysis and the inability to speak. I had lived with excruciating pain due to multiple compression fractures and dealt with steroid-caused osteoporosis and cataracts. I was released from the hospital and began intense home physical therapy to regain my ability to walk. Then the cancer came back a year later. In this round, I faced a terrifying bone marrow transplant, total body irradiation and chemotherapy that was seven times stronger than what I endured before. 

I began another slow journey of recovery.

I had enough experiences and opinions to fill a book.

Instead, I wrote my blog. Fifty-six posts in the last decade: 23 the first year, 14 the next and two or three in the subsequent years. In 2019 and 2020, I only published one. Last year, although I had two topics in my head for months, I didn’t write one. I was spurred on to compose recently after realizing theviewfromthehandicappedspace had turned 10 years old.

My excuse for not publishing more? I’ve been living my life.

Going to an exercise class twice a week, reading books, going to movies, celebrating happy occasions, mourning bad news. Meeting up with friends and family. Hugging and virtual hugging a lot. Attending book club meetings, going out to breakfasts, lunches and dinners and occasionally brunches or happy hours. Going on vacations, attending plays and concerts. Taking every opportunity to toast at every occasion, sometimes multiple times at a sitting. I am mindful of celebrating that I am still here with others whom I love.

I’ve also been busy seeing endless doctors, dentists, oral surgeons, physical therapists, acupuncturists and specialists I had never heard of. Test after test and appointment after appointment. 

After a decade, I’ve reached a point in my life where I think I am physically as good as I’m going to get. There has been a change for the worse in my ability to walk and balance. The neuropathy in my legs has intensified and I am weaker and more imbalanced than I have been in years.

While doctors order tests to find out if there is a medical reason for this and I attend regular physical therapy appointments, I am getting by doing all the things I used to do, but with rides and assistance from dear family and friends.

But I still plan on sharing through my blog. I know it has helped a lot of people already. 

In 2011, I chose the title for my blog and I wrote its purpose: For people who find themselves in lives they hadn't anticipated: seriously ill, disabled or caring for someone who is. I wrote a paragraph about the blog and I wrote a backstory, giving a short summary of how cancer had upended (and almost ended) my life. I wrote about everything I experienced. I criticized the layout of disabled bathrooms, lamented the poor choices of walkers and raged at rude able-bodied folks who park illegally in disabled parking spaces or rush by me to occupy the only handicapped stall in a public restroom. I talked about staying in one of the worst nursing homes and putting up with nutty (and possibly dangerous) hospital roommates. I lashed out at a concert ticketing system that is not friendly to disabled people.

I also celebrated the good things I have found over the years: the kindness of strangers, the establishments that have gone out of their way to assure accessibility, the comfort provided by my stuffed bunny and the joy of graduating to a real bed after more than a d0zen years in a hospital bed in my family room. I basked in the support of my family and friends, particularly at an amazing surprise fifth stem cell  transplant birthday party.

My most popular post by far was the one about disabled parking. I heard from lots of people in many states and a few other countries struggling to understand the rules. Some wanted to fight a parking ticket when they forgot to put up the disabled placard in a car, some wanted to know if their placard would be recognized in other states or countries (generally, it is), others sought to understand the requirements where they lived. And some wanted to rant against the lowlifes who park in the disabled spots with fake or improperly used placards.

While I don’t preach about my experiences with cancer or my blog, I am quick to offer support when I hear of someone with a new diagnosis or preparing for a bone marrow transplant.  I’ll email my go-to blog posts: one about hearing the initial news and the other a summary of important things I learned. I offer any other help they need. 

Dreading chemotherapy-induced hair loss? I’ll send the post I wrote about the hairy truth.

Facing a bone marrow transplant? I’ll send my post about that and will counsel  you by phone, as some have requested.

Many people have expressed gratitude for this advice. And two bone marrow transplant recipients have personally thanked me (via phone calls) for helping them through the process. One person had his wife call me from his hospital bedside to ask the name of the drug I had recommended to ask for if the nausea got too bad. (It was intravenous Ativan.)

All is not easy in my life these days. I have a compromised immune system so keeping safe through COVID-19 is vital to me. Also, my recent spills have been particularly troubling. I had three serious falls within a five-month period in 2021. (I’ve had more than a dozen since getting sick, but these were extra concerning due to their frequency.) Two required visits to urgent care to make sure I hadn’t  damaged my bones or brain when I slammed my head against a door one time and the asphalt the last.  I did not, meaning my Prolia is helping with my osteoporosis and my head is pretty hard.

I believe I’ve accomplished what I intended when I first started the blog: to make folks more aware of what living in a disabled world is really like and providing a glimpse into the inequities I and others face on a regular basis. I am ever grateful that I survived and beyond touched by the support of my family and friends. I am thrilled when I hear from friends whose eyes have been opened to the needs of the disabled: someone who teaches her children it’s not OK to use the handicapped stall, another who tells me how I would love a particular place because it is very accessible, and one who visited a restaurant ahead of time before we went to lunch there to investigate the layout and the ladies room. Another friend, when deciding on an office for her psychology practice in an historic building, made sure there was an accessible room for disabled patients to use. She was asked did she have any disabled clients? No, she replied, but I might. And others who rented offices in the same building might. The same friend made her remodeled bathroom accessible for when I come to visit.  Still another added a grab bar in the shower for when I am a guest. Others bought a portable ramp I can use when stepping into their home.

After I found myself in tears hearing the Tom Petty song “I Won’t Back Down” the first time I slowly navigated a Relay for Life survivors’ lap, I adopted it as my theme song for life. “You can stand me up at the gates of hell”- I might be leaning against a wall and desperately clinging to my walker - “but I won’t back down.”

My New Year’s resolution? To keep living my life and writing a blog post or two.

Happy 2022.




Thursday, July 23, 2020

Toenail Joy is Essential in Sickness or Pandemic



A few weeks ago, before salons were shut back down again due to COVID-19, I got a pedicure for the first time in months. Because I almost always wear closed-toe shoes, very few people get to see my neatly-trimmed peachy-pink toenails.

But I do.  

And they make me happy.

I learned the importance of toenail joy during my grueling three-year battle with cancer.

At times, I had multiple lines coming out of my body and tubes in my nose and mouth. At one point, my arms were swollen and the color of eggplant. My hands had to be restrained so I wouldn't pull out my tubes. After a brain biopsy, the quarter of my head that was shaved sported a nasty scar. Paralyzed from the waist down, I couldn’t control my feet, even to hold them upright as I lay in bed. Machines massaged my legs to prevent blood clots and my feet were attached to braces to keep them in place and prevent them from flopping to the sides.

But through it all, my toenails looked fabulous.

That made me happy.

My friend Mary came up with the idea, bringing a portable pedicure kit with her from Northern California to my hospital bedside. I remember worrying for a second that the strong nail polish aroma would annoy my roommate. (But it was only for a second, because she had been complicit in smuggling in several kittens into our room, so she had already tested the hospital roommate etiquette limits.)

Months later on a return trip to a different hospital, Mary gave me another pedicure. Because I was in a hospital bed at various facilities for four-and-a-half months unable to walk, my frame of vision was limited. I couldn’t see or do much, but I could see my toes. If they had resembled toenails a la Howard Hughes, it would have depressed me more than I already was. After months in the hospital, I learned health aides will help you with a lot, but pedicures was not on their list of services.

My peachy-pink toenails today
When I was released from the hospital to my home, I had a home nurse who was a godsend. Skilled, trustworthy and kind, she would help me with all sorts of things. When I learned she could transfer me into my wheelchair and help me into the car to take me to my doctor’s appointments, I had another idea.

Sure enough, she was able to take me to my local nail salon for periodic pedicures. I couldn’t get in the spa chairs which are part of the luxury package. I sat in my wheelchair and put my feet in a tub of water. It seemed luxurious to me.


For about a year after being released from that lengthy hospital stay, I had to return one week a month for more intensive chemotherapy. One time, a female doctor came in to check on me. She chatted with me, listened to my heart and lungs and checked my extremities. When she got to my feet, she said, “Nice color.” 

“Thanks,” I said proudly. “I always like a peachy-pink or coral.”

She looked confused.

“I was talking about the color of your feet. It shows that your circulation is good.”

I guess that was good news.

Three years after my non-Hodgkins lymphoma diagnosis, my cancer returned. I needed a bone marrow transplant.

 Ugh.

I could finally walk (with a walker), my hair had grown back and I was getting back to my new normal life when I got this news. I knew nothing about transplants and didn't know anyone who had ever had one. I learned it would entail stronger chemotherapy sessions (seven times the amount I had before), total body irradiation and a month in the hospital feeling the sickest I had ever felt.

I was given a thick booklet to explain the lengthy carefully-orchestrated process.  And I was assigned a transplant coordinator nurse to answer all my questions. 

I dutifully read through all the information. I was nervous about all of it, including the description of the hospital stay, the restricted diet while in and out of the hospital and a no -contact-with-pets rule. But if it meant saving my life (and it did), it was necessary. But there was one requirement that annoyed me.

Nail polish was prohibited. 

When my transplant coordinator called on the phone to answer any questions I might have, I asked her about the nail polish rule. Even on toes? 

Yes, she explained. Doctors could tell a lot about your health by looking at your nails.

What about clear nail polish? I asked.

Well, she said. That would be OK.

So during my transplant, I lost every hair on my body, I had excruciating mouth sores that made it nearly impossible to eat and I had an allergic reaction to an intravenous antibiotic that created itchy red welts all over my swollen face and body (my Jabba the Hutt phase). I was too weak to read or focus on a TV show. I threw up many, many times, and I became crazed and hallucinatory after frantically pushing the button of my self-administered morphine pump. 

But my toenails looked fabulous.

And that made me happy.

Also, the transplant -- almost 12 years ago -- saved my life.

That makes me very happy.














  













Thursday, September 5, 2019

My Walker is an Open Invitation to Interrupt Me


When I was in grade school, there was a popular prank that involved putting a “Kick me” sign on someone’s back. You would cheerfully greet the person with a pat on the back, and surreptitiously stick on a piece of paper with the handwritten words and hope it would stay on for hours.

Hilarity would ensue.

These days, I feel like my walker serves as my personal “Kick me” sign, an invitation that says: 

“Hey, why don’t you stop this disabled stranger (or get in her way) and ask her questions, quiz her about her walker, tell her about your mother, grandfather, aunt, uncle, etc. who has a walker/cane/wheelchair, ask what is wrong with her, tell her all your health problems or those of your mother, grandfather, aunt, uncle, etc?”

That has to be the reason why complete strangers, when they see me using my walker, feel compelled to approach me. And comment. Or holler.

And in one case, almost knock me over.

I didn’t experience any of this when I used a wheelchair, but I’ve been using a walker for more than 10 years now and it’s been an endless stream of uninvited interactions. Because I have limited mobility, I can’t just walk away quickly or pretend like I didn’t hear them. So I am drawn into many conversations.

And because I am very, very nice, I will patiently answer their questions or listen to their stories, even when I just want to go from point A to point B and not necessarily have a long chat.

I have used a walker for about 14 years, ever since cancer ravaged my brain and abilities. My rare type of non-Hodgkins lymphoma is gone. (Woo hoo!) But the disability remains.

And I have a fleet of walkers  of various types to help me walk. Each has its own function. There’s one I use indoors at home, another outdoors at home and still another awaits me when I go upstairs. There’s one I use in my exercise class and a lightweight one that folds up and is easy to put in my shopping cart. There’s a different lightweight one that I use when walking longer stretches and there’s the tri-wheeled one I used for long distances or uneven terrain. There is another one which incorporates a seat but it is too bulky to take in the car and doesn't really work for someone like me who cannot balance by myself. 

I am always in search of the perfect walker. I’ve even advised two different college students who wanted to design one as part of their studies. But alas, I haven’t yet heard of The Perfect One. (Some of my criteria: lightweight but sturdy, foldable and portable, wheels that swivel, brakes that work, a fashionable look and affordable.)

Others are apparently on the hunt as well.

“Well, look at that!” they will say. “That’s different. I’ve never seen one of those! Maybe mom (etc. etc.) would like one of those. Let me have a look at it.” 

These comments are usually when I am either using one of my lightweight walkers or my tri-wheeled one. They fold up narrow while I am walking, which comes in handy when squeezing between tables in restaurants or aisles in stores. I am happy to share information about the type of walkers they are. But often my patience is tested. 

I was using one of my lightweight walkers one day as I passed by a woman waiting in the courtesy area at the drug store pharmacy, behind the line so you don’t overhear the other customer’s business. I was just passing by, not in line for the pharmacist, when the lady exclaimed over my walker, came over and tried to yank it from me.

“Well that’s a nice one!” she said, and with both hands grabbed the handles of my walker, trying to take it for an immediate test drive.

I held on for dear life, saying, “I need this to walk! You can’t just take my walker away!”

Another time, I was in a nail salon waiting area and another lady — intrigued by my walker — told me about her mother who uses a mobility aid. She asked if she could take it for a test walk.

Yes, I said, because I was sitting down and didn’t need it. She wandered around the salon for a bit and returned it.

I have answered questions about the brand, where I got it, how much it cost, and my illness. I don’t mind as long as you are polite about it and the question doesn’t stretch into a long conversation.  I was on a sidewalk in Palm Desert on a mini-vacation when a woman walked up to me and loudly said: “Hip or knee?” 

“Pardon me?” I said. 

She repeated “Hip or knee? Which operation did you have?”

“Neither,” I said. “Brain cancer.” 

(And top of the morning to you, too, I wanted to say.)

Then, she stopped and told me her hip or knee and walker story and I told her a brief version of mine.

I’ve experienced some commenters who are brief and to the point, and some who are a bit rude like she was. No time for chit chat, they just want me to answer the questions of where I got my walker and what is wrong with me.

I was just sitting down in a darkened movie theater recently when a voice barked “Temporary?” My husband looked around to see a woman sitting alone in an aisle behind us. “Are you talking to us?”

“Yes, is that walker temporary or permanent?” 

“Permanent,” my husband and I both answered.

“Well, have you seen the walkers that are upright with the high handles. My sister uses one of those and she really likes it……yada yada yada………”

I told her I had checked those out and they were too heavy for me to use in my car and too expensive. And, I wanted to say, can I just get ready to watch the movie?

Then there are folks who see me and tell longer stories. One time I was at car wash, sitting on the bench waiting for the signal my vehicle was ready. A guy next to me struck up a conversation about disabilities in general… and how he is a minister of some sort and they have a lot of disabled people come to the services…..yada yada yada. And on and on. 

Another time I was at a concert and was heading to the restroom during a break and a man came up to me and said his wife used a walker, too, after surgery and she’s sitting over there….yada yada yada…Did I mention I was on my way to the restroom? And didn’t have extra time to chat? 

After show, he met up with me again in the line to buy merchandise from the band. And his wife was there so I got to meet her and hear about her prior surgeries and another upcoming one and…yada yada yada… until somebody protested that we were holding up the line. 

Some days, I just want to make a clean getaway. On a hot day a few weeks ago, I had left my local Walgreen’s and was in the driver’s seat of my car folding up my walker to put it inside when I heard a loud voice. “I’ve been there!” A woman was heading my way, came over to the driver's side, said she used a walker for a while when she had some sort of operation or injury. And she proceeded to fire questions at me:

"Why do you use the walker?"

Cancer.

"What kind of cancer?"

Non-hodgkin's lymphoma. Mostly in my brain.

"Where do you live?"

Here in Castaic.

"Where in Castaic?"

Thinking does she want my address?, I gave her the general neighborhood where I live.

"I’m pretty sure it’s the water. Everything here has been poisoned from munitions plants."

Well, I got sick right after I moved here, so don’t think it’s from that.

"You should check it out. The water tables have been poisoned.

Who is your doctor?"

He’s from UCLA.

"Hmmm."

Ok, I kinda gotta go.

"Have you heard of_____?"

No.

"Well, it’s when you walk in nature and commune with the earth and the spirits. I live in (a mountainous area about 20 miles away) and go on them all the time and I will pray for you next time I’m on one."

OK. Thank you… I kinda gotta go.


All of these people are well-meaning. But imagine if you were interrupted all the time when you are just trying to get around and do your shopping, get your nails done, get in your car or watch a movie. These meddlers are lucky I’m so nice.

Wednesday, August 1, 2018

Saying Goodbye to My Hospital Bed Feels Good


I feel like a little kid graduating from a crib to a big girl bed.

After 12-and-a-half years of sleeping in a hospital bed in our family room, I have moved on. To a regular bed in an actual bedroom.

I am elated and proud. And a tiny bit wary.

The hospital bed has been disassembled and soon will be picked up by trash collectors. Taking its place are a couple of new couches -- replacing the sectional we owned for nearly 30 years.

It’s a big win for the world of home decorating and for me. I’ve been sleeping in the out-in-the-open bed for a long, long time.

When I first got sick in 2005, doctors were unable to diagnose me for months. They suspected I had cancer, but they couldn’t find the specific cells (after numerous scans and blood tests, a splenectomy, grueling bone marrow biopsies and spinal taps). Meanwhile, I got sicker and sicker, lost more and more neurological function. I lost my speech, the sight in one eye and the use of one, then the other leg.

So I was in my home hospital bed months before I was hospitalized. I was too weak to climb the stairs to my bedroom.

The bed has been my home for more than sleeping for years. I am cancer-free (YAY!), but the non-Hodgkins lymphoma (eventually located after a brain biopsy) has left me disabled and weak and in nearly constant pain. Multiple compression fractures in my back make it impossible for me to sit up, walk or stand for long periods of time.

The only thing that makes the pain go away is to lie down flat. I would use my hospital bed many, many times a day for this. And for the occasional nap.

 A few years ago, a friend took a fall and broke her ankle. While recovering, she could not go back to her condominium because it required going up stairs. She was looking for a place to stay after spending time in a convalescent facility, but she hesitated about asking friends to use their home. “It’s not like they can put a hospital bed in their living room.”

Yes, I told her. They can.
Well-worn Bunny on my in-home hospital bed

On one hand, it was embarrassing to have a hospital bed in our family room. Other times, it was a godsend. I learned to get over the embarrassment, as I had to do to with other aspects of my sickness. 
When I first got out of the hospital after spending 4-and-half-months in institutions’ hospital beds, it was wonderful to have one at home. My own sheets, my own TV, a button to raise the head or foot of the bed, railings to prevent me from falling out and to help me sit up.

In those early months, my home nurse and my family caregivers used it as leverage to lift me into a wheelchair or a commode, and as a place to bathe and feed me. My physical therapist used it as a beginning site for my exercises, slowly getting my muscles to work again.

It was my anchor for celebrations. My husband, so happy I was home after many months away, threw a neighborhood party for me in June 2006. I was thin, weak, barely hungry and horizontal for most of the evening, but I loved seeing so many people. I was ecstatic I was home. 

On my 50th birthday that same year, dear friends and family came to help celebrate my milestone. I managed to open presents, cut the cake (and eat it, too) while in bed.

At smaller get-togethers over the years, I would try to sit up and be sociable, but would have to lie flat after awhile, so I wouldn’t be in pain. As I gradually gained strength, the home nurse and physical therapist quit visiting. More than a year of intense chemotherapy, involving a week in the hospital and three at home, made me appreciate the ease of sleeping and recovering in the bed. Then, when the cancer returned and I underwent a bone marrow transplant, the bed helped as I again slowly regained my strength.

Later, the bed proved invaluable for my two separate carpal tunnel surgeries and months of recovery when I couldn’t use my hand to grip my walker. The button to raise myself up helped lift me to use my walker with a special elbow-steering attachment. 

But there were downsides to sleeping in an open room all the time. Every time someone came to the lower level of our home late at night or early in the morning, I was awakened.

And the two cats we had over the years considered me part of the furniture. Day or night first Allie (RIP) and then Albert would jump onto the covers, snuggle up at or on my  feet, or sit on my chest and breathe in my face or give me a quick couple of licks to make sure I was awake.

When my bed’s motor finally gave out a few months ago, it was stuck in the nearly-flat position.  This was a great angle for my back, but bad for getting up or seeing the TV, particularly with Albert on my chest. Medical equipment companies said they would not repair it but would replace it. At a cost of about $2,000 with insurance, I declined. (When the bed was first sent it to me, it was on a rental basis. After a year or so, it was declared ours. We never paid a cent for it, because our medical bills routinely exceeded the maximum insurance limits.)

We instead decided to buy a sofa set that was easier to get in and out of than our previous one. And I could use a relocated lower bed in the adjoining room to sleep. (I couldn’t get in the previous one due to its height -- and the fact that steroids use during my sickness left me with osteoporosis and 2-and-a-half inches shorter.)
New furniture!

Bunny -- my cancer buddy who was a fixture on the hospital bed -- found a new home in the regular bed in the bedroom. 

This new arrangement is working out fine. I’m definitely getting more sleep, uninterrupted. I’m adapting with a bit of difficulty to not having the bars on the side -- which I depended on to get up or turn in bed. And I’ve moved my rolling tray table -- which at times was piled high with medications or supplies -- into the downstairs bedroom so the area looks less like a MASH unit. I lie down on the new love seat when I need some flat time or move to the bedroom for long spells of back relief. 

Our family room looks like a family room, for the first time in more than a dozen years. But I’ve learned that a family room isn’t just what’s pictured in furniture ads. It’s the good, bad and the ugly things that happen there. It’s life and how you adapt to it.

Goodbye, hospital bed. I could not have done it without you.