Bone Marrow Drive This Sunday November 4, 2009

As someone who needed a bone marrow donor and was unable to find a match (even after searching the national and international registries) I feel strongly about supporting any bone marrow drive.

However, this one is special. There is a local toddler in need of a bone marrow donor as his only sibling is not a match. This adorable little boy is the nephew of a friend. I know how difficult it was for me when I couldn’t find a donor. I can’t even imagine what it must be like for the family when the person in need is just a baby.

If you are interested in joining the bone marrow registry and potentially becoming a donor for Liam or another person in need of a transplant, here’s a perfect opportunity to join the national registry (and it’s free!):

Sunday, November 8th

10:30 a.m. to 3:30 p.m.

Northcreek Church – in the Courtyard

2303 Ygnacio Valley Blvd.

Walnut Creek, CA

Saving someone’s life is the greatest gift you can give.

It’s Never Too Late November 2, 2009

I’m planning to do something that others might consider insane.

I’m over 40 (although I think I should get some do-overs – bonus 30-something years – considering I spent the bulk of them in full-on cancer-butt-kicking mode). I graduated from college nearly 20 years ago. (Yikes!) And while I’m doing VERY well in my recovery from treatment, I’m still not 100%. So what crazy idea do I have up my sleeve? I’m applying to law school.

Yup, I’m currently studying for the LSAT (Law School Admission Test), which I’m taking December 5th. Assuming I do well enough on the test, and at least one school will take me, I’ll begin classes in the Fall of 2010, finishing up in 2013. And I’ll be 46 upon graduation.

Some may think I’m nuts for undertaking this journey. (And they may be right.) But you know what? I’ll be 46 in the spring of 2013 whether or not I go to law school. Would I rather be 46 with a law degree or 46 without one?

When I was going through my transplant four years ago, I came across a magazine featuring an article about women achieving things “later in life.” I expected to read a motivational story about a 60-year old going to college or an 80-year old completing a marathon. Turns out, “later in life” to this magazine meant over-40. (Guess what? An ancient women of 42 learned how to surf!) And this wasn’t a gossip, teenie-bopper, or youth-focused publication. It was Real Simple, whose primary target most certainly includes those over 40.

So here I was, 39 years old, about to undergo a transplant that would take at least two years of recovery (if everything went perfectly), and I discover that I’ll go from “30-something” to “later in life” during that time. Obviously, that article stuck with me, but not because I was deflated or depressed by it. (Annoyed, yes.) I was shocked that anyone other than a child would consider someone old at 40.

But perhaps the author was trying to make a different point. Maybe some people do consider 40 the point when life starts to wrap-up. Maybe the article was showing it’s never too late to learn and live.

Attending law school is something I’ve been thinking about since my undergraduate days. Unfortunately, a cancer diagnosis at age 27 got in the way – of this, and a lot of other things. Cancer may have taken a lot from me, but I will not allow it take everything.

Life often gets in the way of hopes and dreams. It’s never too late to chase them.

Da Flu and Da-cisions October 21, 2009

H1N1 – vaccine or no vaccine? That is the question.

Have you gotten your flu shot? How about the Piggie Pox vaccine? (“H1N1″ for you proper folks.) Nasal swab or injection? If you’re older is your answer different? How about your kids?

Having to make medical decisions without any medical training is probably the most difficult part of health care. (Aside from dealing with insurance companies and billing departments, of course.) Doctors give you the best info they can and leave the hard part up to you. Sometimes the decision is a no-brainer and doesn’t even appear to BE a decision – it’s simply giving consent. But other times you need to choose between a bad choice and a worse choice, often with little or no direction from medical professionals.

Following my most recent bone marrow transplant (which was an agonizing decision itself) I needed all my childhood immunizations again. Polio, hepatitis, the works. Now I wouldn’t be me, if I didn’t complicate things a bit. Less than a year after my transplant I developed Guillain-Barre Syndrome (GBS) from which I am mostly recovered. (Quick explanation: my own immune system was eating the lining of my nerves, causing numbness, pain and paralysis. Fun, huh?) Some of the vaccines are “contra indicated” for people with a history of GBS. However, polio and hepatitis is “contra indicated” if you want a long and reasonably healthy life. So what do I do?

The experts where I was getting the vaccines were at a loss. A person who has had two bone marrow transplants is a rarity. Throwing GBS into the mix makes me VERY “special.” They gave me as much info as they could, but none of them had their crystal balls handy. No one could tell me what would happen if I had the vaccines with my history. They left the decision up to me.

I got them. My reasoning: I’d be a lot worse off with polio or hepatitis as opposed to a GBS flare. With GBS, I knew what the symptoms were and I knew the importance of acting fast. It was the enemy I knew well. Basically, I was better equipped to handle GBS. (So far, so good. No GBS flare. No polio.)

I guess that’s the blessing and the curse of our health care system. Nothing is forced upon you. You must give informed consent before any procedure or treatment. But providing sufficient information is often a challenge. Many times “they” just don’t know.

So what do you do about the Piggie Pox vaccine? I personally believe it’s reasonable to have concerns about the safety, effectiveness or necessity of it. To that end, the US Department of Health and Human Services and CDC has launched flu.gov, designed to answer just about any question you might have regarding the flu – both seasonal and H1N1, for individuals, families, businesses and the community. Where to find flu shots, prevention and treatment, an ask-the-expert section and more.

What you choose to do with this info is up to you.

Four Years Ago and a Lifetime Away October 15, 2009

Where were you four years ago?

It was the fall of 2005 and Hurricane Katrina just swept through New Orleans. The Houston Astros made their first World Series appearance. John Roberts was sworn in as Chief Justice of the U.S. Supreme Court. And I underwent a clinical trial bone marrow transplant.

On September 27th of this year, I entered uncharted territory – I crossed the four year cancer-free mark. This is now officially the longest remission I’ve had since I was diagnosed with Hodgkin’s Disease fifteen years ago.

Four years went by FAST, but it seems like a lifetime ago. For a loooong time, I didn’t recognize myself in the mirror. Does this look like the same person to you?

"Mole Girl" in February, 2006.

And in 2009.

Recovery has been a long road. Following my transplant, I went more than two years unable to even drive. I spent several months in a wheelchair, partially paralyzed.

Not only am I now feeling great, but this past weekend I was able to do something that would have been impossible a few short years ago.

"Geared up" and ready to zip!

I went zip lining through the redwoods. Suspended 150 feet in the air, flying through the branches, twenty miles an hour, zip lining. I’m far from a daredevil, so this adventure was quite a thrill for me.

One lesson I’ve learned through all of this medical nonsense is that life is not a dress rehearsal. I’ve spent a large part of the past decade on the sidelines, wondering if I’d ever be able to get back into the game. Now that I am healthy (or some semblance of health), I am not going to let the opportunity to live pass me by.

I’d Rather Do Chemo Than Clean Out the Gargage September 28, 2009

Finding ways to stay upbeat and positive through cancer treatment can be a challenge. Humor and cancer aren’t seen as two words that naturally fit together, but they most certainly can! This is THE funniest cancer book I’ve ever read and one of my all-time favorite book titles, hands down.

I’d Rather Do Chemo Than Clean Out the Garage, Fran diGiacomo

Admittedly, post-cancer diagnosis my sense of humor has gotten a bit warped. (Let’s just say at Halloween I’ve taken full advantage of my hairless status.) After spending fifteen years in and out of hospitals and various treatments, you need to find laughs and entertainment wherever you can, or else you’ll just go batty. This little book is stuffed full of this-sucks-so-let’s-make-the-best-of-it observations from someone who has been down this path herself. (And it’s HYS-terical!)

As the author explains in chapter one: “Where there is humor there is hope. It’s just that simple. A sick mind cannot help a sick body. Laughter frees the mind from the shackles of despair and, in turn, empowers the body. This is neither chemo voodoo nor pseudo psychobabble. I know firsthand that when you ride the cancer roller coaster, you are so frantically clutching the handlebars and wild-eyed with terror that you forget to enjoy the dizzying heights.

“Understandably, you have probably failed to see the beauty and humor around you. As a result, you tend to ignore the benefits of the chemo lifestyle!”

While some of the thoughts and ideas may not be realistic, they sure are fun to imagine. (Seriously, who hasn’t thought about using their Cancer Card to get out of stuff you just don’t want to do, then “guilting” someone into doing it for you? Come on, be honest!)

Have cancer in your life? Get this book. I, personally, found it to be hysterical. A few may not like it. Some won’t get it. Most will find it funny. And some will find it so inspiring that it get’s them through treatment with a smile on their face. Can you ask any more of book than that?

Your Cancer Resource Shelf September 22, 2009

I’ll admit it. I’m a bit of a book junkie. I have dozens and dozens of books covering a wide variety of subjects, and my cancer collection is probably the largest and most diverse of them all. There are a many books I have found enormously helpful, and a few that I have referred to again and again. These are my top three go-to books. Not books I’ve read cover-to-cover, but they are the ones that I’ve referred to more times than I can count.

Everyone’s Guide to Cancer Therapy: How Cancer is Diagnosed, Treated and Managed Day to Day, 5th Edition

“A landmark book . . . So much of what the cancer patient must know to make informed decisions.” — Publishers Weekly

Everyone’s Guide to Cancer Therapy: How Cancer Is Diagnosed, Treated, and Managed Day to Day relies on an esteemed panel of oncology specialists—more than 100 strong, and each experts in their fields—to completely update this definitive cancer resource.

I own the first and second editions of this incredibly informative and useful guide, which is now in its fifth edition.

Equally informative and accessible, this comprehensive book navigates cancer patients and their caregivers through diagnosis, treatment, and supportive care. Every chapter has been methodically updated to include the latest medical breakthroughs and advice concerning cancer treatment.

At nearly 1,000 pages, this book covers absolutely everything. It begins with the basics (understanding cancer; how it’s diagnosed; second opinions), takes you through treatment (deciding on treatment; what to expect in surgery/radiation/chemotherapy), and addresses new and emerging treatments (including immunotherapy, laser therapy, stem cell transplantation, and complementary therapies). And this is just Part One.

Part Two focuses on supportive care, such as side effect management, pain control, nutrition, and infection prevention. Part Three addresses quality of life issues, such as facing mortality, survivorship, late effects, infertility, paying for cancer care, and planning for the future. New advances in diagnosis, treatment and prevention is the focus of Part Four.

Part Five has information on more than fifty different types of cancer and tells you everything you ever wanted (or didn’t want) to know, including a full description of the cancer and its progression. From causes, risk factors and screening, to signs and symptoms, diagnosis, staging, treatment options and prognosis, this is most thorough resource book I have ever come across. (The thirty page glossary of medical terms is also quite helpful.)

In my opinion, if you are going to purchase only one book for your cancer journey, this is the one.

Merriam-Webster’s Medical Dictionary

When beginning a cancer voyage, you basically need to learn a new language. Unless you work in the medical field, words like neupogen, allogeneic, and hematocrit pretty much mean squat.

Much like any trip, when you speak the language, it makes things less frightening and so much easier. When I was first diagnosed, I felt dumb because I had to ask what so many of the words and phrases meant and it was intimidating to not understand. (I even had to confirm what the doc meant by “malignant” when I was first diagnosed. Even though I knew malignant meant cancer, it just didn’t register. He finally had to say, “it’s cancer” for me to get it.) Once you have a grasp on the terms, you’ll be amazed at how empowering it is. (And you’ll impress the heck out of your friends and family when you hear “Medical Terms for $200, Alex,” on Jeopardy.)

Merriam-Webster’s Medical Dictionary packs more than 35,000 entries filled with information into an easy-to-use paperback home and office guide to medical terminology. This up-to-date reference provides definitions for long-established terms and new words, including medical prefixes, suffixes, and abbreviations. Brand names and generic equivalents of many commonly used medications are also included.

The Pill Book

Again, not a book to keep on your nightstand or take to the beach for a light read, but incredibly useful. You may be surprised to discover the number of different medications you will be given to treat your cancer, address side effects, protect your body from treatment, or help it recover. Nearly four years out from my last treatment, I am still taking eight different meds each and every day.

The Pill Book contains FDA-approved drug information plus guidelines from leading pharmacists. Each drug is profiled in a concise, readable, and easy-to-understand entry, making this the perfect reference when you have questions about the medications your doctor prescribes.

This book contains the most up-to-date information about more than 1,800 commonly prescribed drugs in the United States:

• Generic and brand-name listings that can help you save money
• What the drug is for, and how it works
• Usual dosages, and what to do if a dose is skipped
• Side effects and possible adverse reactions, highlighted for quick reference
• Interactions with other drugs and food
• Overdose and addiction potential
• Alcohol-free and sugar-free medications
• The most popular self-injected medications and their safe handling
• Information for seniors, pregnant and breast-feeding women, children, and others with special needs
• Cautions and warnings, and when to call your doctor
• 32 pages of actual-size color photographs of prescription pills

In my humble opinion, these are the three must-haves for any cancer journey. What are your favorites?

It’s Not About the Bike September 16, 2009

It’s Not About the Bike: My Journey Back to Life, Lance Armstrong

Choosing this book to feature this month was a no-brainer for me. I read it in 2000, when it was first released and I couldn’t put it down. I was an instant fan. At that point I had gone through my initial diagnosis and one recurrence. Two additional recurrences, two clinical trials and two bone marrow transplants were still in my future. Needless to say, a lot has transpired in the past nine years. To help refresh my memory, I looked at the book’s reviews on Amazom.com. Not surprisingly, it earned 4.5 (out of 5) stars, but boy, was I surprised by some of the comments.

The review ranked as most helpful on Amazon.com reads in part, “So much more than an athlete bio, this is a wonderfully told, brilliantly written story of a real American hero. The play-by-play cycling coverage is fascinating even to a non-cyclist and the detailed discussion of Lance’s illness, treatment, and recovery is beyond inspiring. The look inside Lance’s childhood, his love life, his amazing journey into fatherhood, and his role as a cancer activist is what brings the whole story home. So much more than a story of athletic achievement and cancer recovery, this is a story about triumph of the human spirit.”

That review has only one comment attached, which reads in part, “Lance is a self-absorbed jerk who is self-entitled and has a mean streak.” And this person is not the only one to express such an opinion.

I read this book with no real expectations. I wasn’t a cycling fan and hadn’t even ridden a bike since I was in high school. I had heard of Armstrong and his battle with cancer and I was told the book was a good read. Simple as that. I went to my local Barnes and Noble to hunt it down the same day I learned about it. (Just couldn’t wait for the Amazon.com delivery.) I searched the Featured, New Releases and Biography sections to no avail. Knowing the title and subject, I didn’t even look in the sports section. Bad move. I finally asked an employee where to find it. He brought me over to the Cycling section, bottom shelf stuck between the maps of local trails and books on bicycle repair. (Hello! It’s “Not About the Bike.”) The placement of the book in a major chain told me that despite the title, even the bookstore didn’t get it. I can’t be surprised that some readers didn’t either.

While some reviewers see him as arrogant, self-absorbed and vulgar, I see him as human, honest and flawed. Just like us all. Maybe he is all those things. I don’t know. But what I do know is he is a remarkable athlete, was dealt a horrible hand and has turned it into an amazingly inspirational worldwide movement. I find this book to be a much more compelling since it’s not a whitewashed version of a Mr. Perfect.

Since the book’s publication, the Lance Armstrong Foundation has raised millions of dollars in the fight against cancer, which is poised to become the world’s leading cause of death by 2012. Armstrong returned to competitive cycling this year to bring attention to this fact, make cancer national priority, and build a global commitment against cancer. Does this sound like a “self-entitled jerk” to you?

This is an organization that is doing incredible things for the cancer community and is one I’m proud to support. I’ve participated in the San Jose Livestrong Challenge the past two years and plan to do so again in 2010. This event motivated me to get a bike and start riding. I’ve gone from unable to walk a block a few years ago, to easily riding ten miles. His story brought home the need to look beyond your backyard when dealing with advanced disease. I was in that situation several years after reading this book, and am alive today because I was willing to travel for treatment.

This book is more than just a good story. It’s more than inspiring. In order to fully appreciate his accomplishments, it’s important to know where Armstrong began, the path he has taken, and the obstacles he has overcome. This book does that in spades.

Crazy Sexy – Cancer? September 3, 2009

The first in my month-long series of cancer books features the only cancer tips book on introtocancer.com right now, Crazy Sexy Cancer Tips. That should tell you how much I think of this book, and the tips contained. (Bibliophiles, never fear. There are other books a-comin’, they’re just not up on the site yet.)

Crazy Sexy Cancer Tips, Kris Carr

When first published, the name of this book caused some spirited “discussion” on the online cancer support groups. Unfortunately, most of those criticizing the name, hadn’t actually READ the book. (Don’t you just love debating someone who has no actual knowledge of the subject?) Anywho, I was (and still am) a huge fan of this book, as well as the follow-up, Crazy Sexy Cancer Survivor. (There is also a documentary titled appropriately, Crazy Sexy Cancer. Unfortunately, watching it remains on my to-do, not to-done list.) I was starting to write a review for this book, but then I remembered my spirited “reply” to one of these discussion boards. This sums it up pretty darn well, if you ask me:

First off, the title is not intended to be literal. It’s provocative. It’s facetious. It’s inspiring. Yes, all the horrible, hideous things that happen to us are far from “sexy.” However, we are more than “cancer patients.” We are still vibrant, interesting human beings. We have dreams. We have desires. We have humor. And that IS sexy.

Her book is simply amazing. I wish it was around 15 years ago when I was first diagnosed. I personally can’t get into the vegan raw diet thing, but the overwhelming majority of tips and stories are right-on and inspiring. Yes, her focus is young women. But that’s because she is a young woman. (You write what you know.) But this book has messages that are relevant for everyone. Not just young women. And not just those of us with cancer.

She specifically says that cancer isn’t a gift. It’s not something you would want to give anyone. But it can be a catalyst. It redirects your focus to what is really important in life. It forces you to “clean house” and get rid of things that aren’t in your best interest. Be it junk food or toxic friends. And you don’t have to have cancer to learn that lesson.

Her tips include the practical (schedule scans early in the day and wear a sports bra with no metal) to the emotional (take time to mourn what you’ve lost). She has a list of the top ten cancer hospitals and their contact info from US New & World Reports. And she also lists a half-dozen places to get barf bags – some even designer. There are more than 70 tips and five pages of resources. And she does all this with sass, attitude and wit.

The critics who say since she hasn’t gone through any treatment, she can’t understand what it’s like are correct. But how many of us have been told we have a stage IV cancer that not only has no cure, but there is no treatment? I certainly can’t relate. For each of my diagnosis and recurrences (a total of 5) the one thing I’ve held on to is that there was something I could do. Radiation, chemo, transplants, clinical trials. To this point I’ve been fortunate in that there was always a treatment. I don’t know how I would have dealt with it if I was given her news initially.

Finally, her documentary is her story. Not mine. Not my cousin’s who lost her battle with cancer in her 40s. And not my father-in-law’s who lost his battle last year. We all have different stories. I don’t believe it was intended to tell the entire cancer voyage. It’s one woman’s voyage. And I can’t wait to watch it.

And here how Kris Carr herself describes her book:

Crazy Sexy Cancer Tips is a righteous guide to kicking cancer tail.  Part memoir, part tips, tricks, how-to’s, and insights. My posse of 13 unbelievable survivor babes contribute their lessons to my adventure story too.  There is no other book like this on the market.

Bottom line, this book rocks!

Victim? I Don’t Think So August 31, 2009

There are some words or phrases that rub me the wrong way:

Someone “lost their battle” with cancer. I refuse to give cancer that power. Those who I have known, loved and are no longer with us did not LOSE anything. They simply had cancer and have passed away.

Hodgkin’s Disease is the “good cancer.” (As if there is such a thing.) Or is the cancer “we’ve cured.” Seriously? I can provide a list of people who have succumbed to this “cured” cancer in the past five years, since “Dr. NS” claimed the victory on a network morning news program. Yes, it does have higher survival rates than a lot of cancers, but “cured”? No way.

Now I completely understand why the phrase “caner victim” is used. I just don’t like it – for me or anyone. “Victim” is defined as, “a person harmed, injured, or killed as a result of a crime, accident, or other event or action.” Yes, I suppose cancer can fall into the “other event” category. But what I picture when I hear that phrase is someone who is weak and helpless – prey, stooge, dupe, sucker, quarry, fool, fall guy, chump, patsy, sap. All also definitions of “victim.”

Those I know who have battled this hideous monster are most certainly NOT weak and helpless. Their bodies may be battered, but their inner resolve and strength is never in question. Cancer ain’t for sissies!

So what do we use instead? Cancer patient? (Boring.) Cancer survivor? (True from day one, but not real zippy.) Professional patient? Human pin cushion? Oncology frequent flier? Anti-tumor activist? Chemo crusader?

Join in, discovering a new phrase could be quite a hoot!

What’s your Murray? August 19, 2009

Everyone has it. That one thing that just warms you from the inside out. Lifts your spirits when nothing else can. Makes all of life’s pressures and disappointments just disappear.

For some, it’s as simple as a long, hot bubble bath or a walk in the park. For others, it’s a bit more extravagant, perhaps a Hawaiian sunset. For me, it’s Murray.

Me and Mr. Murray, my love.

Now, don’t get me wrong, other things tickle my fancy. Spring Training baseball in Arizona. (Let’s go, A’s!) Riding my bike on a perfect Saturday afternoon. Movie day at home with my closest friends. Discovering a new book that I just can’t put down. And those Hawaiian sunsets aren’t bad either.

But there’s just something about my Murray. He’s been by my side for a lot of difficult things, always with his tail a-wagin’, full of kisses and cuddles. Aside from pork, fortune cookies and vanilla ice cream, there’s nothing he loves more than crawling up in his Momma’s lap. (Truth be told, there’s not much his Momma prefers either.) But this little boy is more than just the sweetest little Bichon EVER. He’s also a cancer survivor.

Nearly three years ago, Murray was diagnosed with lymphoma. Yes, the same type of cancer as me. (Gotta love the irony.) During one of his typical cuddle sessions, we found a small lump in his neck. Wasn’t much bigger than the size of a pea, but I knew something was wrong. Having gone through a lymphoma diagnosis myself, I was aware that the combination of painless swelling of a lymph node plus no other signs of infection could equal cancer. Sadly, I was right. I took him to the doctor on a Monday, we then had an appointment with a doggie oncologist on Thursday (yes, they have those). In the course of those three days, Murray went from his typical happy self to a dragging, lumps protruding sad boy. The cancer had advanced that quickly. I was inconsolable. The only thing worse than the pain I was feeling was what Murray was going through. In many ways, Murray’s diagnosis was more difficult than my own.

Murray at the 2007 SF Lymphomathon

I had been through several courses of chemotherapy myself and I couldn’t imagine putting my Murray through what I had endured. As much as it would destroy me, I wouldn’t let one of the best things in my life go through that nightmare. Fortunately we were referred to an amazing vet. (I simply cannot sing his praises loudly enough.) Even though the drugs Murray was to receive were some of the same ones I had, the dosages would be significantly lower. The goal of doggie oncology is to get the furry one into remission, not to “cure” them. It’s all about quality of life. If you can get a three, four or five year remission, that can be as good as a cure in doggie years. He started Murray on a course of chemotherapy at that appointment and literally the next day, most of his lumps were gone. By day two I couldn’t find any. He received weekly, then bi-weekly chemo infusions. He was a bit sluggish on chemo days, had some “pee pee” issues, and since he has hair and not fur, there was some hair loss (poor little guy looked like Einstein) but not much else.

Momma and "Einstein" circa 2007

After six months Murray was in full remission – for two whole months. I was warned at that point the prognosis wasn’t good, but there was a chance he might respond to a second course of treatment. We went for it. That was nearly two years ago.

Murray is now nine years old, remains in remission and has never been more puppy-like, playful or happy. He is truly a miracle boy.

Murray has always been my special love. When my husband and I looked at that box full of puppies nine years ago, one of them wandered over toward me and put his little hands up on the edge box, as if to say, “pick me, pick me.” And I did. I always believed that Murray chose me, not the other way around. And as psycho as it sounds, I truly believe we were meant for each other. He has brought more joy to my life than anything else could. And in me, he got a Momma who recognized the cancer, chose to treat him aggressively yet compassionately, and as a result, continues to live a very cushy life.

After everything he and I have both been through, I treasure him now, even more than before. Multiple times, each and every day he makes me smile, laugh, and feel loved.

Everyone needs their own Murray. What’s yours?