So Many Forces

A few years ago I noticed that all of my novels feature strong female characters. I never set out intentionally to do this; it’s just something that happened. Personally, I’ve always been attracted to strong women, successful women, smart women. I guess without a sexual attraction to women, that was next in line. I was surprised when I realized this, and wondered what possible influence could have been responsible.

And then Carrie Fisher died.

Of all the horrible things that have happened in 2016 (including my cancer diagnosis) this upset me the most. Why would that be? People die all the time; death is a part of everyone’s life.

Then I started seeing clips from Fisher’s films on the news.

Perhaps the appeal of strong women stems from her portrayal of Princess Leia in “Star Wars” which I saw as a teenager when it premiered in 1977. She was sure plucky, and smart, and strong willed. I’ve always enjoyed the movies of strong female actors: Barbara Stanwyck, Joan Crawford, Bette Davis, Ida Lupino -- but those all came after. It must have been my subconscious working when I began writing my novels featuring strong female characters. 

Whatever the inspiration, I was impressed by Fisher and her performance in “Star Wars” and am very sad that she died so young -- even after living such an adventurous life.

Books I’m Reading

Am reading this.

Just finished reading this.

All Our Todays

Today is notable for which of the following reasons?

A: It is the 75th anniversary of the bombing of Pearl Harbor, Hawaii
B: It is the day NBC will air “Hairspray Live!”
C: It is the one-year anniversary of my cancer diagnosis

All three are correct.

It’s kinda hard to believe I’ve already made it through my first year of cancer. When I look back at everything that’s happened in the last year, I’m amazed: diagnosis (on Pearl Harbor day, of all days), kidney biopsy, bone marrow biopsy, chemo, chemo and more chemo, edema swelling my legs like an elephant’s, debating with my doctor about reducing my chemo levels, having the low blood numbers go higher and the high levels go lower (both good things), reducing the amount of water I drink each day, reducing the amount of sodium I consume each day, emerging from it all “technically in remission” yet knowing all of this will be part of my life until I die.

I’m constantly amazed when people say “I’m sorry” when they find out I have cancer. “Don’t be,” I tell them. “It could be worse.” At least I didn’t die in a plane crash; I have a heads up. I had one doctor recently tell me I had a cynical/positive attitude about my cancer. “I’d rather think of it as a ‘shit happens’ attitude,” I said. We all have our problems and this is mine.

Many people say their first year of cancer was the worst. If I look back on my situation in the years to come and find that to be true, then that's okeh. It's been a bad year (that could certainly have been much worse); but maybe the "worst" is behind me now and we'll run the course on cruise control. I certainly hope so.

Shoe, Meet the Other Foot

At a recent family-in-law gathering, one guest (noticing that our anniversary was a few days away) asked how Matt and I met. I explained that I was working for a newspaper as a theater critic reviewing a musical and Matt sat next to me. The usual questions followed: do you remember the name of the show (“Crazy For You”), did you like it (**** out of *****), etc.

She then asked me if I had ever written a bad (i.e. negative) review. I told her I had, but even for the worst shows I always tried to include at least one good thing from the production. It might be a specific performance, the production design (which, honestly, can make or break a show), or a moment in a scene. I never wanted my readers to say, “He hates it, we won’t go.” I wanted them to say, “Hey, he says this one actor was really good. Let’s go check it out.” I never found pleasure in writing a negative review; it always pained me. I had been active in theater for many years prior and I knew first hand how hard people work to put on a show. Productions might fail for a variety of reasons, but I doubt passion is ever one of them. 

Now, twenty years since I stopped reviewing theater, the tables have been turned.

Five years ago I began writing novels with the goal of writing them and getting them published. Anything that happened after that was just icing on the cake -- except in the case of negative reviews. Most of the reviews for my thirteen books have ranged from average to excellent. Only on a few occasions have I gotten a negative review -- a couple of them pointedly mean. I try really hard not to let the negative reviews bother me, but they do.

Each time it happens, I think back to my years working for different newspapers and the various types of subjects (theater, books, social events, dance and opera) that I reviewed and the fact that I always tried to be nice. I might not have always succeeded, but at least I was never intentionally mean.

It’s Like an Addiction

You know how people say an addict won’t change unless s/he wants to? No matter what you say, it won’t matter if the addict doesn’t want to change? The same can be said for moving into new technologies: unless you really want to move in that direction, you won’t -- no matter what anyone tells you.

Despite years of resistance, I am now a convert to GPS technology. I grew up in scouting, learning how to read maps (a dead art now, I’m sure). I always traveled with paper maps. I didn’t need (or want) fancy technology. With our recent trip to Glendale, California -- and the need to drive the windy Hollywood Hills at night, during rush hour -- I decided to try a GPS program. I’m now hooked.

Dale (what we named our GPS voice in honor of our vacation) got us to our Hollywood Hills destination with no problem. It was a little tricky getting back to the hotel because we couldn’t get a connection in the hills, so we had to backtrack by memory until we got out of the hills and onto flat land (successfully). Otherwise, the GPS got us to all our destinations with only one glitch (guiding us in the wrong direction for parking at the Broad museum downtown Los Angeles).

I guess I can say I’m now environmentally conscious of the need to conserve paper (as in paper maps) and will bow to Dale’s wishes whenever we travel.

Books I'm Reading

Am reading this (again).

Just finished reading this.

TGIF -- Sometimes

For most people, Fridays are the start of happy times and a great weekend. When I was a kid, Friday night promised either a night of great happiness or great terror. It was a coin toss -- until the clock struck 6:00 p.m.

For a large chunk of his life, my father was an alcoholic. He didn’t drink all the time, but when he did it was bad. His favorite time for drinking was after work Friday. I don’t necessarily blame him. He had a job that was physically tough and he worked hard to provide us a life free of want (mostly). But there were times he needed to drink and get drunk.

On the good Fridays, when he came home right after work (before 6:00 p.m.), he might have picked up fried chicken for dinner, we might have dinner at home, or go to a local fast-food place (which was exotic to a young kid back then).

From my personal collection.

On the most special nights of all, we would go to a restaurant called Jack’s (see photograph) on the northwest corner of McDowell Road and the I-17 freeway near downtown Phoenix. Jack’s offered all-you-can-eat fish fry or chicken and dumplings. I almost always got the fish -- along with a build-it-yourself balsa-wood airplane from the waitress.

If the clock struck 6:00 p.m. and he wasn’t home yet, we knew it was going to be a bad night. I’ll spare you details of what happened on those nights. But there was one particular bad night I remember vividly -- even though it happened more than 45 years ago.

During summer, I would sometimes walk to a public swimming pool. I would walk home; or my mother or father would pick me up after work. On this particular Friday, it was my father’s turn. The pool closed (probably around 6:00 p.m.), so I left and waited outside. I don’t know what time it was that my father showed up (although it had already gotten dark -- and it gets dark very late here in summer), but I was so happy to see his white truck pull up. I got in (ignoring the liquor smell), shut the door and we started home. When we stopped at an intersection, I glanced over and saw my father’s right arm covered in fresh blood from a huge gash. Terrified, I started screaming and crying. Turns out my father got in a fight outside the bar with “some Mexican” and the other person slashed him.

Books I’m Reading

Am reading this.

Just finished reading this.

The Sodium Chronicles

My cancer affects the efficiency of my kidneys. If I eat too much sodium, my body retains water because my kidneys can’t filter out the sodium as quickly as they used to. So, too much sodium and I retain water; retaining water leads to edema, which leads to weight gain and additional strain on my kidneys making me a generally unhappy camper.

It’s taken me a while to figure out that a certain meal eaten at a restaurant one day leads to a weight gain the next. Research pinpointed sodium as the culprit. Further research indicates that I pretty much cannot eat any meals at any restaurants ever again (it would seem).

Keeping in mind that the daily recommended maximum of sodium is 2,000 mg, I’m trying to eat no more than 1,000 mg of sodium at lunch (and very little at breakfast and dinner). This means I can’t eat Pei Wei’s Pad Thai any more because it has (get ready) more than SIX THOUSAND mgs of sodium in a bowl. A wrap at Jersey Mike’s has more than 2,200 mgs (I can eat half today and half tomorrow, I suppose). A wrap at Chipotle has more than 2,300 mgs.

This is only a problem when I eat out. At home, eating low sodium is a breeze: cook from scratch, don’t add salt to foods, etc. Easy peasy. But, who doesn’t like to eat out once in a while? I know I do (or, I did).

Books I’m Reading

Am reading this.

Just finished reading this.

Son of Thalidomide

I was having a nice chat with my chemo doctor Tuesday. I asked him to recommend for me a book or paper that would explain in detail how my daily drug Revlimid works. All I knew prior to that question was that it was a derivative of the dreaded anti-nausea medication Thalidomide, and that it somehow prevented the creation of new blood vessels, thereby killing off cancer cells the way its parent drug killed off the creation of arms and legs in babies in the 1950s.

He explained that scientists don’t know how Revlimid works. He clarified that it enters the bone marrow (where my cancer comes from) and kills off the cancer cells. Okeh. Then he told me that my kind of cancer was originally treated with Thalidomide.

Color me surprised. I hadn’t heard that. Although it helped, the original treatment had so many side effects that some clever doctor figured out what exactly in Thalidomide worked against the cancer and pulled out that small part -- resulting in Revlimid, what my doctor called “the first designer drug.” 

Revlimid, in general, has few side effects and those are pretty mild. Thankfully, I’ve had virtually none of them, so that makes me really happy. According to my doctor, my numbers are still doing really well and that makes him really happy. I guess the situation is the best it could possibly be for a cancer that I’ll have the rest of my life and a drug that I’ll keep taking for the same length of time.

Everything You Wanted to Know About the "James Murray Mysteries" but were Afraid to Ask

The 1930s were a long time ago and Los Angeles a very different world. And now, a year after the last James Murray Mystery was published, I've published an encyclopaedia of sorts that explains all the little inside jokes, esoteric bits and pieces of historic information, and the background behind some of the choices I made as the author of the five novels set in 1930s Los Angeles.

The James Murray Mysteries Companion is filled with all kinds of information -- like the actual people who were the basis for the mysterious Miss Compton and the dashing Buddy Rogers in the first novel. The origin of Scott Hobby in the second novel. The real person behind the fictional scientist in the third novel. (Hint: he’s not a scientist!) Why I chose baseball as the setting for the fourth novel. Some of the famous Hollywood stars who have cameos in the fifth novel.

You’ll uncover my favorite actress, my favorite movie, my favorite dessert and my favorite restaurant in Los Angeles as they all make appearances in one or more of the novels. I also explain how a real-life medical condition of mine was used to inform the plots of two of the novels.

So, sit back, relax and discover some of the secrets contained in the five James Murray Mysteries! 

[You’ll find the link to the book in the column to the right called “My Books.”]

Books I’m Reading

Am reading this.

Just finished reading this.

Two Faced

I’ve always been a stoic person -- dealing with pain or hardship and trying really hard to not show it to others (except Matt, my spouse, of course; he has to endure my bitching and complaining). I always figured everyone had problems: making a fuss about mine isn’t going to make mine better and sure is going to make things harder for everyone else.

When I had surgery for my heart defect (January 2015) I didn’t make a big deal about it. I told few people, was in and out of the hospital lickety-split, went back to work 13 days after I got out of the hospital and basically returned to the life I had before.

When I was diagnosed with cancer in December 2015 (obviously, not a good year for me) I did the same thing: told only those who needed to know, started the chemo and endured the side effects with little complaint. When I go out to see people I do everything in my power to put on a happy face. There are whole groups of people who interact with me who don’t know I have cancer because I’m always so upbeat and optimistic. But cancer and chemo are exhausting; and, while things are better now (reduced chemo, etc.), it’s still a challenge.

I think because I present my “can do” attitude, they think my cancer is not bothering me. I was discussing this very issue with Matt just a few days ago. I think people are expecting more from me because they think “His cancer isn’t bothering him, so he can do this.” Well, it is bothering me and, increasingly, I can’t do it.

Now, of course, when I have to turn down things -- like lunch dates, extra work assignments, etc., which is bad enough -- I also have to explain that my cancer and chemo are the reasons why. I can just imagine people thinking “He’s lying. He’s always been fine with his cancer and chemo. It’s just an excuse.”

I’m not sure what to do: I don’t want to have to explain everything to everyone, I don’t want pity, and I don’t want people to stop inviting me to lunch because they’re afraid of exhausting me. I guess the best I can hope for is an understanding that I have good days and I have bad days. I like to laugh and carry on like everyone else and I certainly don’t want to be defined by my cancer.

Books I’m Reading

Am reading this.

Just finished reading this.

Books I’m Reading

Am reading this.

Just finished reading this (the original 1940 issue).

Gone to the Dogs!

My incredibly talented spouse, Matt, just started a big sale of his original silk-screen prints in his Etsy store! The prints are of famous children's-book characters silk-screened onto pages of their own stories! He takes old and damaged books, puts the pages on Bristol board and then adds several layers of silk screened images to them. It's recycling at its best! He's got lots to choose from, including Nancy Drew, Dorothy (from Wizard of Oz), Huckleberry Finn, Sherlock Holmes, and even some dog and cat prints! Remember, the winter holidays are right around the corner. It's never too early to start buying presents! Just go to his LitKids store, before the end of September, and enter the checkout code DOGDAYS. You'll get $5.00 off your purchase of $20.00 or more. Shop now!

57, and all its Different Varieties

When I was in high school, I was certain that I would be dead before the age of 30. No specific reason, just a certainty. After reaching 30, then 40, then 50 I decided it would be kinda cool to live to be 80 -- to see how the world changes in my lifetime.

Then, the subtractions started:

When I found out I needed surgery to correct a heart defect, I was all for it. My father died (lung cancer) when he was 71 and I was determined to live until at least 72.

Then I found out I had a type of cancer that could not be cured and for which the average life expectancy after diagnosis was only 5 years. So, I became determined to live to be at least 61.

Today I turn 57 and I’m pretty happy to have made it this far. Although my cancer treatment is going well, there is always the possibility things may take a turn for the worst, or that I will get hit by a car, or shot by one of those “good” people with a gun.

But then, the additions started:

Tuesday, I had a visit with my cancer doctor. I’ve been doing a “maintenance” chemo regimen that has contributed to my numbers getting even better each month. My doctor said “If I were a teacher handing out grades, I would give you ‘A’s right across the board.” He even smiled when he said this. :-) I asked him frankly about the 5-year average and he said I could pretty much forget about that, that he would feel confident giving me at least another 10 years, by which time there would be new and hopefully better treatments. (Out of the blue he said “I can’t guarantee you’ll make it to 80” -- which I thought was an interesting coincidence.)

So, I guess it’s true to say that -- for me, anyway -- life begins at 57!

Ten is the Loneliest Number

I just watched the movie “The Imitation Game” and gave it my personal rating of 10 stars out of 10. I’m really stingy with 10-star ratings, so I wondered how many films I have given that elusive rating.

I’ve been tracking all the films I’ve seen since November 1994 (when I met the man who would become my spouse). In that period, I’ve seen 2552 movies. Out of those, I’ve given only 39 movies a rating of 10 stars (that’s .015%). 

The oldest film is from 1927; the most recent is from 2014. There are some from other countries (England has four; Germany has two), some are animated, and many are in black and white -- with a couple silent films thrown in. Many of the films are from the old Hollywood movie-studio system, but some are from outside the studio system. (“Citizen Kane” is absent from this list because, even though I have seen the film many times, I have not seen in since I started tracking my films. I’ll have to address that.)

Here is the list (in alphabetical order):

2001: A Space Odyssey (1968)                   

All About Eve (1950)                                  

All the President's Men (1976)                     

Argo (2012)                                             

Bambi (1942)                                           

Capote (2005)                                          

The Day the Earth Stood Still (1951)             

Double Indemnity (1944)                            

Drive (2011)                                            

The English Patient (1996)                          

Fa yeung nin wa (In the Mood for Love, from Hong Kong) (2000)        

Fail Safe (1964)                                       

The Imitation Game (England) (2014)           

Inception (2010)                                       

Iris (England) (2001)                                 

Jaws (1975)                                             

L.A. Confidential (1997)                             

The Last Emperor (1987)                           

Lawrence of Arabia (1962)                         

Das Leben der Anderen (The Lives of Others, from Germany) (2006)   

Man with the Movie Camera (Soviet Union) (1929)   

Mildred Pierce (1945)                                 

Mononoke Hime (Princess Mononoke, from Japan) (1997)         

Network (1976)                                        

Olympia 1. Teil - Fest der Völker (Festival of the Nations, from Germany) (1938)      

Ordinary People (1980)                              

Original Cast Album - Company (the making of the cast album) (1970) 

Le Peuple Migrateur (Winged Migration, from France) (2001)     

Rebecca (1940)                                        

Singin' in the Rain (1952)                           

Sunset Boulevard (1950)                            

Temple Grandin (2010)                              

Toy Story (1995)                                      

Vera Drake (England) (2004)                      

Wallace and Gromit Curse of the WereRabbit (England) (2005)

Wall-E (2008)                                           

Who's Afraid of Virginia Woolf? (1966)          

Wings (1927)                                           

Wo hu cang long (Crouching Tiger Hidden Dragon, from Taiwan) (2000)

Books I’m Reading

Am reading this (again).

Just finished reading this.

My Right Foot

In 6th grade, I was a crosswalk guard during lunch recess. One day, a car filled with teenagers cruised by and someone threw out what I thought was a cigarette. Being a conscientious budding environmentalist, I walked over to stomp it out. As my foot was about six inches above the “cigarette” it exploded. It was a firecracker. I don’t know what kind it was, but the explosion was loud enough to deafen me for a couple hours. Right after it happened I went to a teacher and told her. She didn’t seem to care that I was now deaf, or that I almost lost my foot. No, she just kept telling me to get back to the crosswalk. After hearing what happened to that young man in New York this weekend (who stepped on some kind of homemade fireworks), I tried to imagine how my life would have been had I actually stepped on the “cigarette” as it exploded. I’ve used my feet a lot in my life. Things would have sure been different.

It's Not Quite Sophie's Choice

I met with my cancer doctor today. Keeping in mind my cancer is not (at this point in time) curable, and will come back no matter what treatments I do, he gave me a choice:

(Time periods are not exact; rather, presented in round numbers to make the issue more clear.)

I can bump up my chemo to aggressively treat my cancer for about six total months (I've already done three). This brings with it the considerable side effects (most notably exhaustion, and the foot and leg swelling). I would then get off the chemo for about six months before I have to resume; or

I can continue the low-dose "maintenance" chemo for about a year. This choice comes with almost no side effects and gives me a better “quality of life.” I would then be off about six months before resuming.

Because my cancer is technically “in remission” and being treated well with drugs, I am (probably) not a candidate for the T-cell transplant (the benefits of which would only last a year or so anyway, then I would need to resume the chemo).

Which choice do you think would be better?

Books I’m Reading

Am reading this.

Just finished reading this.

I wish I had High Blood Pressure

I never had high blood pressure. Mine has always been right around normal -- about 110/80. During the time my heart defect was being diagnosed, my blood pressure fell dangerously low -- at one point it was 75/50. After heart surgery, my blood pressure returned to basically normal.

Then, I was diagnosed with cancer -- and here’s why I wish I had high blood pressure:

After my heart surgery, I was put on a drug to help my heart beat a little slower. This drug also lowers blood pressure.

For my cancer, I was put on a diuretic to help pee out extra water. This drug also lowers blood pressure.

For my cancer, I was put on a drug to help me pee out the mutant protein caused by my cancer. This drug also lowers blood pressure.

I recently was taken off the heart drug and put on a different heart medication to help my heart beat a little more slowly. Guess what? That’s right: this drug also lowers blood pressure.

Although my blood pressure has remained at an acceptable level (about 90/70) it is right on the edge of being too low. This can cause all kinds of problems. If I had high blood pressure, I would be happy that it was being treated and kept under control. As it is now, I never know when I might pass out because it has fallen too low, again.

Kemo, Kancer, Kardiac, Kidneys

The kancer I have creates mutant protein molecules that gum up the works inside my body -- mostly by attacking various organs, including the kidneys, the liver and the heart. Over time, these proteins will make those organs fail. The kemo keeps these proteins at bay, slowing down their onslaught. I have to visit my kidney doctor and my kardiologist regularly to make sure damage has not begun.

Tuesday, I visited my kidney doctor. He was very pleased on the excellent progress I’ve been making with my kemo. Yeah! Apparently, there is still no damage to my kidneys. Another sign that we caught the kancer early. I recently had an echocardiogram showing there is no damage to my heart. Yeah, again!

Kancer is still sucky, but I guess it’s fair to say I’m in about as good a position as I can be in given the circumstances.

Books I’m Reading

Am reading this.

Just finished reading this.

Grandfather Soldier

My grandfather, Jose Martinez, was 12 years old when he left home and became a student at the United States Indian Vocational Training School -- otherwise known as the Indian School -- in Phoenix, Arizona. After a few years, he left school and enlisted to fight overseas during the Great War. Although closed in 1990, the school still stands, along with a memorial to the students who enlisted.

The Heard Museum (Phoenix) is currently showing the exhibition Remembering Our Indian School Days: The Boarding School Experience which details some of the memories of children who attended -- many against their will or that of their families -- some of these Indian schools around the country.

Balancing Act

I’ve completed the first week of the second round of chemo and have not gained a single pound (of the dread water weight). I’m cautiously optimistic enough to think that I might have finally found the correct balance between the doses of the chemo drugs, the amount of water I drink each day, the amount of what kind of foods I eat each day (with a special eye on not too much sodium), and the timing of my diuretic. It’s taken a long time to get to this point and, frankly, it’s been exhausting. Every day I drink a little more or less water, I have a little more or less sodium, I change the time I take my diuretic and then wait -- wait until I can weigh myself the next morning to see if I lost, gained or maintained my weight. The next day, it’s a repeat of the same thing to see how my weight reacts.

Back to the Grindstone

My happy month away from chemo ended yesterday, Tuesday, as I started in on my second two-month round of treatment. The month off (after the initial two months treatment) was wonderful. My energy returned, my taste mostly returned (except sugar still tastes icky), I lost all of the water I retained (24 pounds of it!) and, best news of all, my blood numbers remained good despite not having treatment for an entire month! All of this bodes well for the future.

But it's not all bunnies and ducks. The water weight somehow damaged nerves in my feet (all the swelling pressing on them, apparently) so I now have painful shots of nerve pain randomly in both feet. This is especially annoying at night when I'm trying to sleep. A shot of pain wakes me up and it goes on like that all night. I have to stay vigilant of any water weight to make sure it doesn't happen again. I've got that new diuretic which has been doing really well for me. I can up the dose if necessary to make sure the bloating stays down. And then, I expect the crippling fatigue to return like last time. That is really bad. Not having any energy at all to do even basic household chores.

Even though, overall, I'm doing well and feeling optimistic, there is the overarching reality that myeloma is not curable. I will never be "cancer free," and I will need treatment (off and on) the rest of my life. Sigh!

Books I’m Reading

Am reading this.

Just finished reading this.

New York’s a Whole Other World

I don’t understand people from New York. Here’s an example. I know a woman from New York. She’s lived in Phoenix about seven years. She wants desperately to go back to New York. The other day, I asked her why she hated Phoenix so much.

Her: I can count on one hand the number of five-star chefs in Phoenix.

Me (staring at her incredulously): I don’t know of anyone in Phoenix who cares whether a restaurant has a five-star chef. You can get great food at a restaurant that does not have a five star chef.

Her: I just bought my [seven-year-old] daughter a bathing suit that has a pattern that is a fake Pucci design.

Me: Okeh.

Her: My daughter doesn’t know it’s a fake Pucci. She doesn’t know the difference between a real Pucci design and a fake one.

Me (staring at her incredulously): I doubt any seven-year old knows the difference between a real Pucci and a fake Pucci.

Her: In New York they do.

Me (staring at her incredulously)

Her: New York has a lot more museums that Phoenix does.

Me: True, but how many times a year would you go to a museum -- five? ten? Even if you go to a museum once a month, you wouldn’t go more than twelve times a year. For all of the money you save not living in New York, you could fly there once a month and stay a couple days and go to a couple museums. Plus, you could fly to Los Angeles or San Francisco and see the museums there.

Like I said, I don’t understand people from New York.

Books I’m Reading

Am reading this (again).

Just finished reading this.

To Pee or Not to Pee

Remember back in March when I wrote about my feet swelling to the size of a loaf of banana bread? Yeh, well, about that. In the ensuing months, my feet swelled even more, then my ankles, then my calves, then the lower half of my thighs, then the upper half of my thighs.

In all, I accumulated 24 pounds of water weight before I decided to put a stop to it. I demanded a two-week break from chemo (my doctor said it was fine as my numbers were so good) and set about trying to stop the water weight (known in medical circles as edema).

We had already spent two months adjusting my chemo doses to no avail. We added a diuretic (to make me pee) and increased the dose with no success. So, during my break, I had a “come to Jesus” talk with my kidney doctor and he prescribed me a different diuretic. Guess what: the water weight started pouring off. In about two weeks, I’ve lost 14 pounds. I still have ten pounds to go (to get to my pre-chemo weight) but I’m confident that will happen.

Here’s my dilemma: I go back on chemo in a week or so. I assume the edema will return. Perhaps the water lost by the new diuretic will counter the water gained by the chemo. I know it will be a delicate balancing act, but it’s something that needs to be done. I refuse to gain weight ever again -- even if it’s only water weight. I struggled my whole life with my weight and only in the past decade or so got it down and under control. It’s still a constant battle.

Listen: edema is not to be taken lightly. All that extra weight is bad for my heart (remember my heart surgery in 2015?) and other organs. Not to mention whatever damage is being done to my legs. I understand edema is often a companion to chemo treatment; but really, it’s not acceptable.

So, fingers crossed that I can establish a kind of edema detente, to keep up with the chemo yet not incur additional problems from the water weight. Right now, I’m cautiously optimistic.

Four to get Two? I’ll Take it!

Had my monthly meeting today with my cancer doctor. He said I am responding “amazingly well” to the chemo. My protein numbers are way down (into the normal range, which is good) and my albumin level is increasing (although still not yet high enough) which is also good. He thinks if I do a total of four months chemo (two more in addition to what I’ve already done) then I can be off chemo for possibly as long as two years (!). Myeloma is not curable, so it will always come back. But four months on and two YEARS off is a great tradeoff.

We also talked about the always-possible T-cell transplant. He said it would allow me perhaps three years off from chemo. I wonder if an extra year is a great deal though, considering how horrible the T-cell transplant prep is (mega doses of chemo, hospital stays, etc.) and the lengthy recovery process (up to two months of not being able to interact with people or go out, etc.). Not to mention the cost. Not to mention that the cancer will still come back anyway.

The downside to all this good news is that my feet/leg swelling continues apace. I’ve gained 17 pounds of (what must be) water weight. We’ve tried many things without luck to get it to stop and go back down. Today, we reduced the dose of another of my chemo drugs in the hopes this might allow the water weight to go away. Sigh! It’s really frustrating, especially considering all the years I’ve struggled to keep my weight down (I was 183 six weeks ago).

Right now, I’m focusing on the silver lining around the cloud. It’s been a good day. (Plus, we got pizza for lunch. Always good.)

The Big “D”

I guess it was a mistake to ask the nurse. After a few weeks of chemo, I told her that I had been free of the bad side effects like diarrhea and vomiting and asked if that meant I would not get them. “No,” she said. “Sometimes it takes four to six weeks for the drugs to build up. So, you might still get them.” 

Great, I thought. Something to look forward to.

So then last Tuesday, my fifth chemo treatment, began like any other day -- but ended as one of the worst days of my chemo period. Yep, the big “D”: diarrhea. It started a few minutes before I went to bed and lasted all night and half way into Wednesday. After a few phone calls I found out I could take an over-the-counter medication -- which seems to have helped. Although the flood has stopped, the exhaustion lingers on. If it’s possible, I’m actually more exhausted than my most exhausted days over the past few weeks.

Thankfully, Matt’s mom brought homemade soup. That helped.

Books I’m Reading

Am reading this.

Just finished reading this.

Like Honey for Bees

If you know me, you know I’m a nice guy. Being nice is more efficient than being a shit.

This morning, I found out that my health insurance had been terminated through what turned out to be a mistake by the insurance company. I didn’t know that when I called to ask them why.

Although I would have been totally justified to yell, scream, berate and demand, instead I was completely calm and nice: “Did I make a mistake to cause this?” “Can you help me figure out what happened?” I was pleasant and I was appreciative (after all, the customer service person didn’t cause it and she was trying to help me).

You know how you feel when someone treats you like shit. It feels pretty horrible, doesn’t it? You also know how it feels when someone genuinely appreciates your efforts. I would rather someone try to help me because I was being nice and they wanted to please me, than because I was threatening and terrorizing the poor person who was terrified of making me even madder.

And you know what? Being nice works about 99 percent of the time. The glitch has been corrected and my health insurance is back in force.

Into Every Life a Little Change Must Come

My first month of chemo (of three) ends in a couple days. I’ve taken a little time to think about how different my life is right now compared to this time last year when I was recovering from my open-heart surgery.

Some of the changes include the ongoing swelling in my feet -- so bad that I’ve had to invest in new shoes of a larger size. That sucks. There is also the fatigue, the here-today gone-tomorrow sense of taste, and the occasional trembling in my hands.

The biggest change, however, is that I have not done any serious writing since August of 2015. I’ve been a journalist most of my life. I quit my full-time corporate job in 2012 to allow myself the luxury of focusing on my long-form writing (novels). I used that time well, publishing nine novels and a collection of short stories. But I noticed in the summer of 2015 that I was struggling to finish my most recent novel. Struggling not because of writer’s block, but because of fading energy. This was a few months before I started the path that led to my cancer diagnosis. I didn’t understand at the time why it was so hard to write; I understand now.

Since then, I’ve written nothing new. I’ve had to turn down freelance writing projects and put my own writing aside. I’ve gone from writing four or five or six hours a day to nothing. I spend most of that time now resting with reading or napping. It totally sucks. Not only do I not have the actual strength to write, I also am lacking the mental strength to concentrate on writing. It’s amazing how much energy that takes, and how little of that energy I have.

Keeping in mind that my cancer can only be treated but not cured, my hope is that the treatment will eventually allow me to return to something like a normal life; but I wonder if that will happen. I hope it’s a case of the night being darkest before the dawn, but I’m not confident. I sometimes wonder if my writing career is pretty much over and that this will become my new normal.

Chemo Update: Food for Thought

Chemo fucks with your body. After only three treatments, things have started to change. I’m retaining water and bloating, and I have these small tremors in my hands. I’ve also pretty much lost my sense of taste. Everything tastes like cardboard: crunchy cardboard, soft cardboard, occasionally tart cardboard. It’s the oddest thing to pop a piece of chocolate in my mouth and not be able to tell if it’s chocolate or a piece of potato. Apparently, it’ll come back once the chemo stops, but right now, nothing. The first time I noticed it, I had tried a spoonful of yogurt. I couldn’t taste “yogurt,” so I told Matt it had gone bad. He tried it and said it was fine. Now, I pick food based on the consistency (crunchy, soft, etc.) rather than the taste. Perhaps it’ll be a good thing to help me keep off the weight that the steroid is making me gain (water retention). Amazing the amount of comfort we find in food that’s missing when we can’t taste it.

Books I'm Reading

Am reading this.

Just finished reading this.

Wanted!

Books I’m Reading

Am reading this.

Just finished reading this.

Cancer Update - The Chemo Sphere

Just home from my first day of chemo. So far, not feeling any different at all despite having five new drugs in me. (Five!) Had a great chicken teriyaki lunch in advance, then an hour at the doctor’s. Here are some photographs from today’s excitement!

Matt needed to get fortified for the excitement.

Hooked up and ready for lift off!

Some of the tools of the trade.

First treatment all done!

Look at the swag I got! Like being nominated for an Oscar!

Cancer Update

Visited my blood-cancer doctor today. He told me a recent blood test showed my myeloma may not be as advanced as previously thought. It’s still there and still bad, but rather than being in the third stage, the doctor thinks I might be borderline between stage two and three -- which is a good thing. He offered me the choice of delaying treatment to wait and see how the disease progressed. I told him that, while I don’t want to be “aggressive” in my treatment, I do want to be “pro-active” and see if we can control it even if it isn’t so far developed. He said that was exactly what he would recommend. So now, it could be only a few months chemo (rather than the original plan of four or five months), remission, followed by waiting to see how well I continue to do rather than just going for the stem-cell transplant.

Cancer Update Number Three

Met with the blood-cancer doctor Thursday. It’s multiple myeloma -- the worst of the three stages, but still not as bad as amyloidosis. So, there’s that. One of the more interesting things I learned was that I might have had myeloma for years, festering away undetected under the surface. That could explain a lot about my health in the past few years.

I’ve got several months of chemo ahead of me (starting in a couple weeks) in the hopes that I will be zapped into remission. If that happens, then it’s off to the hospital for a stem-cell transplant. The doctor says there’s no cure, but the transplant could offer complete remission. Isn’t that the same thing? If everything goes well, I’m likely to have five more good years -- possibly ten, given advances in treatment. So, fasten your seatbelts, boys and girls. It’s going to be a bumpy ride.

Books I’m Reading

Am reading this.

Just finished reading this.

Cancer Update Number Two

Yeah for me! It looks like I have the not-so-bad cancer called myeloma. Meet with the doctor next week for confirmation, but the bone-marrow-biopsy results seem pretty conclusive. Not sure yet what that means in re treatment or whatever. Have to wait another week for that news.

Cancer Update Number One

Well, it appears I’m special. I was diagnosed with amyloidosis (a bad bone-marrow cancer) after my kidney biopsy in November. My blood-cancer doctor thinks it might instead be myeloma (a not-so-bad bone-marrow cancer) based on my lack of other symptoms. Met with my doctor today. He reviewed the results from the myriad additional tests he’d had me take in an effort to answer the eternal question: which cancer is it? The results are inconclusive and weird -- so much so that he’s going to present my case to a cancer board this week to get their input. After that interesting conversation, I had a bone marrow biopsy. In case you’re wondering, yes it hurts like shit. Really.