Tuesday, April 24, 2012

Book Review: To Love, Honor & Cherish by Anastacia Faraci

I was excited to get this book to review, as it is a nice thick novel about a woman living her life while undergoing treatment for breast cancer, and trust me, those books are few and far between.

All protagonists should be cancer patients, in my worldview. Wouldn't the Hunger Games have been a better book if Katness had breast cancer? I'm not sure she suffered enough in the Games, and a little cancer might have done her some good. We know Gale and Peeta wouldn't have minded, and without breasts she probably could have even shot that bow and arrow straighter.

But, I digress.

As I began To Love, Honor & Cherish, I became slightly disappointed because, despite the name, I had somehow missed that it was a romance novel, a genre I wouldn't normally read. Frankly, I don't have a romantic bone in my body; I'm very un-femalelike when it comes to affairs of the heart. Even so, a romance about a woman with breast cancer is intriguing, and so I didn't let the genre stop me. I know that there are many single women who have breast cancer who are very worried about a man ever finding them attractive again (and some who are married feel the same), and why not write a story for them?

The main character in this book, Andrea Marino, is a nurse and breast cancer survivor who suddenly finds herself facing breast cancer for the second time. Her love is a doctor, who has not long ago lost his wife. As in all romances, how they come together and the obstacles they face make up the bulk of the story. What Andrea has to overcome, her damaged self-image, is obviously difficult but something that all women with breast cancer can relate to.

As I read, I started to feel like I was getting to know the author. Her charm shines through the book and infuses it with her sincere and warm personality. I came to quite like the main character, who was filled with old-fashioned charisma. Just the words and phrasings she chooses lead you to know that this is a woman you would enjoy getting to know.

There were some nits that I won't pick at hard: minor things, such as calling Rhett Butler "Brett," and other small errors that don't interfere with the story. Most of the breast cancer descriptions did ring true for me, but not all. I didn't suffer when I had minor treatments, like biopsies, but I won't quibble that the main character did. A few of the procedures she describes don't match my knowledge, particularly the chemo description. I'd love to know what kind she got that she was in and out in only an hour, and why they didn't give her colony-stimulating drugs when her whites got low instead of give up on chemo altogether, but she never mentions either. And, of course, some of it is all too accurate, like lengthy referral times and rude people in offices.

The main problem I had with this book is there didn't seem to be any kind of editing at all. There were long, repetitive descriptions of boat trips and furniture buying that an editor would have cut out. It's not that they were badly written, but that level of detail about mundane things that didn't move the story forward is completely unnecessary.

However, I remind you that I am not interested in romance and love scenes, and when faced with them I behave more like a 12 year old boy than a grown woman; I'm more likely to stick my finger down my throat and pretend to barf than swoon. So, my comments are really just because it's not my style rather than a reflection on the book itself. Most of the book is charming, and may provide a hopeful fantasy for single women who have cancer. Finding a strong, handsome man who doesn't mind reconstructed breasts, who helps you through treatment, and who provides support along the way and a few boat rides is not a bad thing. There are bumps in the road, as in every cancer patient's life, and Andrea, while strong and resilient, shows her vulnerability and need as well as her strength.

This is a love story written for breast cancer patients; a niche market for sure. Many women will relate to the idea of starting a new romance with a changed body and overcoming a damaged self-image. Anastacia Faraci and her book fills that need.


Sunday, April 22, 2012

It runs in the family

I'm not the only writer in the family.  My father also enjoys telling tales with his fingers, and I'm proud to announce that he has a new book out.  It is called The Hole in the Doorknob.  It is a wacky mystery, set in the world of casinos and bars.

Here is the description on Publish America's website: "Silberman creates a cast of characters that you will grow to love. In an effort to recapture the life he once had with Barbara, his wife of fifty years, eighty-year-old John invites Lindsey, a local bartender, to spend a weekend with him at a luxurious casino hotel. As the subsequent events unfold, we meet an assortment of degenerates, including all of Lindsey's former husbands. When Lindsey turns up dead there are many with motive and opportunity, John included. The Hole in the Doorknob is written with humor and pathos, events that will make the reader laugh, wonder at the absurdity of the characters, and lastly cry. The rowdy yarn ends up being a sensitive metaphor for faithfulness and long-lasting love."

He also has other books available on Amazon. His autobiography, "The Life and Times of an Ordinary Joe Named John" describes his years working for a technical consulting firm. "Growing up in the 1930s in New York City and shuffled between divorced and bitter parents, he recalls times of great wealth as well as periods of abject destitution. At the tender age of eleven, his socialite mother packed him off to a rigid military boarding school, where he learned lessons of survival that proved invaluable throughout his life. As an adult, John built several companies from the ground up, soaring to the heights of his profession. At the same time, he put up with crazy neighbors, oddball friends, and eccentric drinking buddies. The book is replete with anecdotes about business, friendships, and family. Silberman’s voice is refreshingly homespun as he talks about the world of business and the inevitable disappointments — and triumphs — that come with living."

Joseph's Revenge is described thusly: "What do part-time prostitutes, penny-pinching lawyers, pasta-guzzling partners, and snubbed British wives have in common? One man cheated them all. Joseph has just been laid off from his company, and then fleeced out of $3.2 million in stock options by its president. Revenge is on Joseph's mind as he sits down to a gourmet meal with his wacky group of friends. As they formalize their plot, we meet wildly funny characters: Part-time Sally, law student by day, lady of pleasure by night; wool-wearing UK Maggie, who recognized the smell of Sally's perfume on her husband; and Adios Raul, attorney and renowned cheapskate. Joseph, Portia, and best friend, Fat Max, mastermind the plan, and hilarity ensues as they carry it out. The aftermath of Joseph's evil plot is the story, and we read with pleasure as Joseph and his cronies take advantage of their opportunities. Set in Sacramento, California, much of the action takes place at notable city landmarks and prominent restaurants, but the amusingly named characters also take us through Nevada, Paris, the Emerald Isle, and the wilds of United Airlines from Sacramento to New York. In Joseph's Revenge, we are treated to a rollicking ride through the world of corporate politics by way of whorehouses and houseboats."

And finally, This is All About Joey, "is a page-turner from beginning to end. We see how Joey's good fortune of winning a progressive jackpot in a Reno casino starts a journey which includes a cast of characters as well-defined and interesting as any in modern fiction. In Joey's hunt for the missing money, the author leads us through the best and worst of the gambling world. The less than honorable characters Simon and Roberto, attempt to beat the odds at the blackjack tables, and end up in the middle of an undercover FBI scam to uncover a terrorist cell. The twists and turns take us to casinos all over the U.S. and lead us into predicaments and situations that keep us wondering until the last pages. This is a must read for an afternoon of sheer enjoyment."

All of these books, with the exception of his autobiography, are quick reads, novella length, and great for an afternoon under a tree.  You will see where my sense of irreverence comes from, and although I'm not as apt to write about whores and drinking - in fact, my only topic is cancer - we do share a sense of cheeky fun.

Saturday, April 21, 2012

My Wednesday PET Scan..

...was canceled.

 I got the call the day before, saying my insurance company had denied the test. I'm very grateful that they called me, because if I'd made that drive for nothing, I would have sounded like Mel Gibson on a bad day. The reasoning for the cancellation was, I think, that the scan was too soon. You are supposed to wait three months between PET scans, even if you don't have a definitive diagnosis.

Which I don't.

My San Francisco SuperSurgeon says that he thinks I might have inflammation in the ablated spot in my liver. My Sacramento SuperOncologist thinks there is 2 cm area of cancer growing back in the ablated spot. This test was going to be the tie-breaker, but now that noose tie must be worn for a bit longer. They will reschedule for some time in May and in the meantime, I do not know if the surgery was successful or not. I might remind you, the surgery was back in October.   It really is annoying not knowing if cutting out half your liver paid off but as Mel would say, *#$*  it you (#*$(#   #$*#)*'s.

It really has been the most surprising thing that I've learned since living in this medical world. They have these incredible machines that rely on electrons, atoms, and super magnets that were created by geniuses and unimaginable a generation ago, but they still may not give you a definitive answer on anything.

And, they cost a lot. So, we wait. I either have cancer growing, or I am NED.

There have been some upsides to this. Thinking that 2 cm of cancer is growing back in what's left of my liver spurred both my doctor and I to restart treatment. C-Diff scared us both but so does cancer. The Abraxane I've been on has been relatively easy, and truthfully, the first two weeks on it I felt better than I did before I started it. Now, I'm starting to feel some minor effects, mostly tiredness and more bone aches and cramping, but I still feel as fine as a person on chemo forever can feel.

Of course, when the test is done it might show that I'm NED and we won't know if it's the chemo or if I was NED anyway, but I suppose it doesn't matter.  Living with uncertainty is part of this cancer lifestyle.  And, as Mel would say, $#*$*# that too.

Naturally, being on a chemo that causes baldness, I have been on a hairwatch:

Day 1, first treatment.  My scalp immediately started hurting so I thought I'd lose my hair early. But, I didn't.
Day 17,  the famous day that most folks lose it.  Yet every hair is tight in my head.
Day 21, balding day.  Most people look like mangy dogs by day 21 and shave it. I still have it all.  Dare I believe I'll miss this side effect? I need a haircut - should I call my stylist?
Day 23, Oops.  I pulled on my hair during one of my obsessive checks, and got about ten hairs. I did it again, and another ten hairs. And again. And again.   If this was anything like last time, by tomorrow,  Day 24, a pull would garner me 100 hairs, and it would start falling everywhere and start to make a big mess.
Day 24, (today).  No mess. It is coming out, but same as Day 23 - very slowly. I find hair on my keyboard, but only one or two, not 50 like last time. My drain isn't clogged yet.   Oddly enough, it's only coming out on the bottom around the hairline, where the black hair is. The top, silver part, is strong, like bull.  I'm going to end up looking like David Bowie circa 1980, or perhaps Moe from the Three Stooges. Maybe I'll keep enough so that I can manipulate it, like Donald Trump. I definitely won't shave it until it starts making a mess.

Business news:  I am experimenting with a new way for fans of But Doctor....I hate pink to chat with each other.  I will inform you all as soon as the kinks are worked out.  In the meantime, you can "like" my facebook page and start that way, and as always, comment below.

Thursday, April 19, 2012

Accurate Pill Markings

Maybe you didn't know this, but if you find a pill on the floor and chemo brain makes you forget what it is, you can can go to Drugs.com, put in the markings on the sides as well as the shape and color, and it will tell you what kind of pill you have on your hand.

I wonder what it says about these?

Thanks to my friend Chickadee!

Probably it says "The Truth."


Sunday, April 15, 2012

This Surreal Life

The high school where I work, and where my son attends, had an event last week where all the classes play games against each other to be declared the victor. They are silly games, fun to watch: obstacle courses, dizzy frolics, crab walks, etc. It is the event of the year, and many people from surrounding middle schools bring their families to watch, and then they decide to send their children to our school after watching this raucous display of good sportsmanship and school pride. Rightly so, I should add: I work at the best high school in Sacramento.

I go every year and love the kids' joy at being young and having all life right in front of them, and competing at something that doesn't matter at all yet matters so very much at the time.

I had a shirt with "judge" on it although I wasn't really judging, and I sat in the staff/judges section. I had been asked to save spots for people on the floor so I did - put my purse to the left and my coat to the right. The stands filled up - thousands of kids and families there.

But, my coworkers never came so I was all alone with several feet on each side of me in a sea of people jammed next to each other, screaming, chanting for their class, for their kid. As I watched, isolated, I dissolved out of the picture. I saw the teachers I work with every day, I watched the kids, I heard the screaming but it was all a bit unreal and as if I was in a mist, a sort of out-of-body experience. I was watching but I wasn't there. I knew that next year, this event would go on exactly like it has for 30 years, and the only difference is I may not be alive to see it. Would anybody notice? Would anybody think of me? I saw them blowing whistles, judging events, laughing with each other, and I knew they wouldn't; I am dandilion seeds, blown into the wind. Gone. But, I looked up and there was my son on the highest rise in the back corner with friends, smiling and cheering. He would think of me. Would he be sad? Would he forget me for this one fun moment? Would he be remembering how much I enjoyed this event? I felt sorry for that motherless boy in the corner.

I do this more and more lately. I'll be sitting at my computer at the dining room table, and my son and husband will have a conversation in the other room, and I am not a part of it anyway, but in my thoughts, I'm really not a part. I'm already gone. I imagine them talking like this when I'm dead. Will they be having this desultory conversation about mundane things, exactly as before? Will they feel my loss or will it be normal? It's both a comforting and disturbing thought.

This is what having a terminal illness is like. You now see yourself as two people - the one fully present and enjoying life, at the same time, you are seeing things as if you will be gone. It's almost like having a split personality. You can enjoy the things you are doing, but out of the other eye, you picture the world without you.

Because, you know that life does go on.

It is very strange to be at a place and not there at the same time, but that is what is happening. You begin to feel alienated from other people. It's particularly so for most of us who still appear to be healthy. We are dying, yet we don't need to park in the handicapped zone; we don't look sick, we wait in line, we listen to people talk about their small aches and pains and petty problems, and we are standing behind them with this big huge secret.

Due to medical advancement, those with Stage IV metastatic breast cancer live healthier lives. It used to be that cancer took over and we died quickly. Now, we are able to beat it back for a year, for two, or five if we are lucky. But, there is no cure, and everybody eventually does die. This means this new generation of cancer patients must live in a strange kind of purgatory, our brains split between life and death.

It's an odd feeling to mourn your life while you are still living it.


Saturday, April 7, 2012

Tits-on-a-boar: A male’s thoughts on his own breast cancer (Guest Post)

“Tamoxifen?” the pharmacy clerk asked me when I presented her with the prescription for the first time. “Are you sure? That’s generally used as follow-up for …”

“Yeah, yeah, breast cancer,” I told her. “That’s me." The one guy you’ll regularly see getting refills of this stuff. I guess I’m coming back for the next five years.

Hers was a pretty common reaction. Since my diagnosis last summer, I can pretty much drop others’ responses to news of my breast cancer into three roughly equal categories. The first being those who quite kindly express sympathy and offer support and encouragement; the second being those who express disbelief, laugh or think I’m kidding (I have to admit that I have a rep’) and, my favorite, those who look at me with an air of expertise and solemnly declare that “oh yes, men get breast cancer, too,” as if they are imparting some new nugget of knowledge to a heretofore uninformed audience.

Yeah, no shit, Sherlock. Do you wanna see my mastectomy scars?

When I found the lump “on my chest” (as many of us are more likely to say than “breast”) last summer, I knew there was a problem. This was not my introduction to the concept of male breast cancer. Sadly, my favorite uncle died from metastasized breast cancer the morning of the ultrasound visit at which my wife and I were to learn we were having a son. Now a spectacularly brilliant, 6-foot-3 honor student, about to begin college as a physics major (yeah, I’m braggin’), my son carries that uncle’s name. It’s homage to a kind and gentle giant of a man … and now serves as an unintentional reminder of what caused his death.

Uncle Philip was like many men and didn’t necessarily react when he discovered a lump on his chest. He was well into Stage 4 when he was diagnosed. His story is what caused me to react quickly. It also set off the appropriate alarm bells with the medical professionals with whom I’ve dealt since then.

The general practitioner immediately sent me to the hospital for an ultrasound and what the radiology tech graciously called a “man-o-gram.” The results came packaged in a bright pink folder (gee thanks, Susan G. Komen folks).

When the radiologist himself asked that I come see him before I leave the building, I pretty much knew what was up. Sitting in the dark room with an array of flat-panel screens in front of us, the ugly blob on my chest stood out in sharp contrast. Kinda like Sarah Palin at a MENSA convention, it clearly didn’t belong there.

“Worrisome,” he said. “No, make that extremely worrisome.” And, with those words, I joined the elite ranks of the 1-percenters. Alas, not those who’ve been the focus of the Occupy Wall Street movement. No such luck on my part. No, I am among that small group of breast cancer patients who happen to pee standing up.

Screw the biopsy. I want that thing OUT of me.

Within days, I was in surgery for a lumpectomy. I should have just started with the full trim job. The margins weren’t clean. This time I opted for a bilateral mastectomy. I, a 53-year-old, six-foot-four-inch tall, happily married father of two, was a getting a mastectomy. I grew up the ‘70s. I did my best to be a sensitive, New Age, kinda guy, sympathetic to the plight of women … but who ever thought I had to get frickin’ breast cancer and a mastectomy to prove it??!?!?

There are actually about 1800 of us diagnosed each year. Many of them had been aware of a lump, but concluded – or worse, were told by medical professionals – that it was nothing to worry about, “merely a cyst, or a fat deposit.” Had it not been for my Uncle Philip, odds are good I’d have ignored it, too.

The importance of being open
Probably the most common question I get from others in “the breast cancer community” (community?!?!?!? Man, that’s a shitty place to live and the taxes are way too high), is how I feel about discussing the diagnosis with anyone outside of a close circle of friends and family. A lot of people want to know if there is any embarrassment or concern about whether I would be viewed as being less of a man, having been diagnosed with what is generally regarded as a “woman’s cancer.”

Nope. Not one bit. First off, given that modern cancer treatments usually involve the surgical removal of the offending body part, I’m actually pretty happy I didn’t get a more “manly” cancer. If I had to give up something, middle-aged moobs are the first thing I’d offer on the sacrificial altar.

There is no emotional connection. Very little of our physical, psychological or sexual identity is wrapped up in ours. Reconstruction – if we opt for it – involves a tattoo.

Chemo bald? Hey, for us, it’s not a crisis. These days, it’s just hip.

It’s pretty much tits-on-a-boar cancer for us guys.

Second, I have nothing to be ashamed of. Given the family history, I was diagnosed with the predictable genetic mutation. Had I known, I would have learned years ago that my chances of developing breast cancer rocketed from the 0.05% risk faced by the general population of men to just about seven percent.

I’ve made it something of a mission to be open and honest about the whole thing … perhaps to the discomfort of those who are listening. I’ve written about it, even to an audience usually focused on – of all things – bicycle racing.

I’ve also done several radio interviews, a few newspaper articles and, most recently, spent a morning discussing male breast cancer and a patient’s view of chemo with a nursing class at the local university. I am, by any definition, something of a loudmouth.

If by potentially “embarrassing” myself, I can convince one guy who finds a lump on his chest to take the thing seriously, it’s well worth it. If I can get one nurse to argue with a doctor who might have just uttered “probably a cyst,” I’ve scored a win. I’ve already talked several of my cousins into getting screened to see if they, too, are a member of the “8765delAG club” (an inside joke for all of you geneticists out there).

If I’d have curled up and not spoken up, it would have been fundamentally dishonest. What’s worse, I would dishonor my uncle's memory, whose own experience quite probably saved my life.

This one’s for Philip … both of them.

Charles Pelkey is a Wyoming attorney, who began a transition into a new career after spending more than 25 years as a journalist, serving as a radio host, newspaper reporter, press secretary to former GOP Senate whip Alan Simpson and as an editor at the cycling magazine VeloNews. He was diagnosed with an invasive ductal carcinoma and underwent a double mastectomy in the summer of 2011. He received chemotherapy for four months, before a relatively rare and unexpected cardiac side-effect from Taxol prompted his oncologist to end treatments about a month early. His heart appears to be none the worse for wear and his hair and eyebrows have finally grown back. Having lost his magazine job on the same day his diagnosis was confirmed, Pelkey is now practicing law on a (more than) full-time basis in Laramie, Wyoming, where he lives with his wife of 25 years, Diana, and their two children, 17-year-old Philip and 12-year-old Annika.

Sunday, April 1, 2012

First Abraxane

It's Wednesday - chemo day. On this day I start my fifth chemo, Abraxane. I drive my usual route through the city, park in my favorite area of the hospital parking lot, grab my iPad and purse and make my way to the building entrance. The afternoon light is slightly golden and the day, after a bout of rain, is warm, moist, and spring-like. Hopeful. I see wet blossoms on the small trees struggling to survive in the asphalt meadow of the parking lot, and I realize, as I open the glass doors littered with small drops, that I have been coming here weekly for nearly two and a half years.

By now I'm a pro at this chemo thing. I take the wheezing elevator to the 3rd floor, walk directly to the sign-in sheet, write my name, greet the receptionist, and sit. I have long stopped noticing the mottled gray/blue carpet, the machine carved wood sign that warns about the wait, the hospice and wig brochures, or the yellow and black check pattern of the waiting room chairs. I know one or two have lost their padding, and I avoid those without thought. I pull my iPad out and start my kindle app to read. The wait might be 10 minutes, or it might be 45; by now I'm beaten into submission, or perhaps I've finally learned patience. I no longer care about time. I'm here, I have nowhere else to be.

They'll get to me.

When my name is called, I walk directly to the scale and step on. I wear heavy clothes because I'm always cold and why wouldn't I be? In jacket, sweater, boots and jeans I weigh 95. Losing weight again, but nobody comments. They take my weight, I know, merely to calculate my dose of medicine. I hop off the scale and go back into the infusion room without being told, where the oval ring of recliners sit waiting, like hunched bears.

Sometimes now, I find one that is farthest away from people. I read more than talk these days. The chatter of the rookies about their newly lost hair, their uncertainty, their doctors - it has become tedious. But the room is open and people sit just feet from each other so it's hard not to be drawn in. There are donated paintings on the walls - seascapes and still-lifes, painted in oils by somebody who watched too much Bob Ross on TV. There are homey, 1970s-colored hand-made afghans and quilts on the back of each chair and a pillow with a paper case on each seat; chemo poles aside each one. The shelves on the walls have wigs and ball caps, free for the taking but too ugly to want. The one window shows the sky, the tops of trees, the edge of the parking garage. To the left is the hospital. I've seen budding trees and rain, sunsets and shimmering heat through those windows, season after season.

It's hard to believe this shabby, comfortable infusion room is where I have spent every Wednesday for two and a half years. And, it's likely where I'll spend every Wednesday until I have no more Wednesdays left to spend.

If only days were like coin. If you could save them up, not spend them, gather them to use when you need them. I think of days I wasted. Threw my coins into something foolish, thinking there was an endless supply. I wish I could have them back.

I know the drill. Today's nurse puts in her special needle, and I turn my head to the right automatically, otherwise the blood doesn't flow properly out of my port. Once the flow begins, I watch the bubbly maroon liquid stream into the tube and then ready myself for the metallic taste of the heparin flush. This chemo, Abraxane, requires an IV anti-nausea drug and 10 mgs of decadron. I watch her place the bags on the pole - bags with my name and the time on it and a large syringe taped to one. She will inject that into the bag at a time known only to her. The assistant drops a fluttering sheet with bloodwork results onto my lap. My marrow is doing its job now - next week, I know will be different. I tell my nurse, and really the entire room since no privacy is available, that for the past two days my stomach has been acting up, the pain has gotten much stronger, my bowels are not normal. I'm worried about the return of c-diff. I wonder if I will need something stronger than compezine for nausea. She promises to call a prescription for Zofran in for me if I need it, and turns on the flow.

I know all the nurses: their children's names, their problems, how they feel about their jobs. One once admitted she doesn't want this to be happening to me. I admit that I don't either.

Drip. Drip. How many drips have flowed into my system over the past two and a half years?

I get my chemo, I go dry, I'm unplugged, and I leave, driving through darkened streets to my family. This chemo is no different than any other. I am weaker than I used to be but I tolerate it well. I have some nausea but it's controlled with Ativan and Compezine and is gone in two days. Ominously, my hands and feet tingle and I know l-glutamine may help me with that; I have used it successfully in the past. But, it must be dissolved it in a glass of water and the thought is now repugnant, me with no appetite. I know I can't get that in my stomach this week.

Next week, I will for sure. I promise myself.

My head also has that feeling you get before you are going to lose your hair. It took ten days last time, now the feeling has happened in two. It's as if I've slept on dirty, knotted hair for too long, and ants are crawling on my scalp. I even washed my hair, just to be certain it wasn't actually dirty. Nope, even freshly scrubbed the feeling is there. The follicles are rebelling, gathering reserves and preparing to jump out of my head. I'll be bald soon.

Carboplatin. Taxotere. Taxol. Navelbine. Abraxane. Herceptin and Zometa. Drip. Drip. Drip.

It's Wednesday. It's chemo day.