100th Post! or Why Do I Blog?

This is my 100th post to this blog! Who would have ever guessed, when I wrote that first entry of my travelogue, that I would end up here.

Why do I write this blog?

My motivation has changed radically with each new chapter. In 2005, a free-spirited young woman set off traveling around the globe and used this space to document her adventures. Upon returning to the United States, she met her perfect match and got married in an idyllic beach wedding. A few years later, the two welcomed their first child into the world. This new mom wanted to capture each amazing moment of her little boy's development and share it with friends and family. Since parenting was such a joy, the couple decided to have another child, and were pleasantly shocked to discover that this new baby was, in fact, twins. The tale took a turn as the pregnancy met with complications that resulted in a month of hospital bed rest followed by a premature delivery of the beautiful baby girls. After a harrowing stay at the NICU, the family was finally reunited under one roof, and the adventures of parenting 3 under 3 began.

And now, as you know, lung cancer.

So, once again, my motivation for writing has changed.

~~~~~

The first few cancer posts were a way to let friends and family know what was going on, and to avoid having to explain details over and over. While this remains a major focus, I now find more reasons to write. For me, reading blogs by people going down this strange path has been vitally important; I hope that I might provide that comfort for others.

~~~~~

To my pleasant surprise, several of my blog posts have resonated with people on the other side of cancer. A friend who is an oncologist working with breast cancer patients asked if she could share my post, "An Exciting Time to Have Cancer" with her patients, as she felt I explained things in a concise, accurate, yet personal way that would mean a lot to them.

~~~~~

My friend, Agi, who is an instructor in the biological engineering department at MIT, shared a few of my blog posts with her lab class to help them understand the human side of what they are studying. She also wanted to give them "the reality check of how insurance companies and pharma businesses intersect with the science."

"[S]cientific discoveries don't translate into swift clinical action," she said, "it takes an educated, persistent, brave, and articulate patient -- especially with very recent findings."

One of her students wrote to me, expressing how much reading my blog has helped to motivate him and make him realize "that some fairly meaningless name I'm studying, like ROS1, can be so life-changing for another person."

He eloquently expressed to me that he is one of the students, working and studying

"late night after late night, training to become the professors, scientists, engineers, and doctors that will one day dream, develop, test and prescribe the weapons that you go to war with every day. All of these professionals push past obstacles day to day in order to sharpen your swords and strengthen your shields, so that when you go to war, you will win."

It inspires me to hear that kind of passion from the upcoming generation of scientists. 

~~~~~

I was honored to have this blog make Healthline's list of the Best Lung Cancer Blogs of 2013. I hope this will help people who are dealing with this disease to find the blog.

~~~~~

In case you may have missed it, I was interviewed for a story in the Ann Arbor News. Journalist Katrease Stafford wrote a great article that covers events in my life both pre- and post-cancer.

~~~~~

And while I am very happy to be making these new connections, there is one other very important reasons why I write.

I write because there are conversations I may never get to have with my kids. One day they may read my words and I hope that will give them comfort. It is a way for them to know me, to understand how I view the world, and what I find important about how we travel through life. I want them to know how much they motivate me to be a stronger person. And I want them to know and understand that I love them more that I could ever explain, and I will love them for all eternity.

Happy New Year to all! May 2014 be filled with laughter, love, and life!

Patience

Cancer is forcing me to learn a whole new kind of patience. Though I am starting to feel fairly decent on my new meds, my stomach is still unpredictable, and I don't have the energy I used to have. In some ways, because I feel close to normal it is all the more frustrating to face my limitations. I can't multi-task as seamlessly as I used to, which I attribute to the powerful medicines that have been bombarding my body for the past 6 months. I find myself getting overwhelmed when I'm trying to follow several things at once, whereas I used to thrive in these situations. Janet of Gray Connections wrote a lovely piece about how this "chemobrain" side effect has helped her to empathize with people who face various challenges. (Janet is also a ROS1+ stage IV lung cancer fighter, and a lovely and brilliant lady.) This experience is forcing me (sometimes dragging me kicking and screaming) to become more patient with myself and accept that things may need to move at a slightly different pace now.

The funny thing is, I've often attributed my impatience to having bone cancer as a teen. I had just started high school, and was wrapped up in trying to figure out that world when BOOM! Cancer. I learned that your whole life can change in an instant. When I finished treatment and had the wonderful gift of living, the notion of how fleeting it all is stuck with me. 

Case in point: 

Jason and I met in November, got engaged in December, got married in April. 

When something is right, don't wait!

I don't mean to say act foolishly, just don't waste time doubting yourself and making excuses.

And if my kids are reading this one day: remember that Dad and I were both 29 and had years of dating experience so we were able to assess the situation well. Be cautious about rushing into a lifelong experience at age 18!

When I was traveling around Australia several years ago, I thought I would try my hand at scuba diving so I signed up for a 3-day / 2-night scuba boat excursion on the Great Barrier Reef. I was recounting this to my sister a few months ago and she commented that I had never scuba dived before, so how did I know I would like it? I didn't really know how to respond. It hadn't occurred to me that I might not like it, and even if I had not enjoyed diving, I'm sure I would have found something else to do on the boat which would have been fun. 

When an exciting opportunity presents itself, say yes. 

I think this philosophy has been a big part of what drives me. As a result of this, I have led a pretty great life. 

But I'm scared

That's okay, I'm scared too.

I've been called fearless, but they're wrong.

I'm, sometimes, beyond terrified.

But sometimes, beyond terrified

Is where you need to be.

So now I am trying to balance impatience with patience, and gain everything I can from both. I guess this is my gift from cancer. ...kinda wish I could have learned an easier way!

I am looking forward to a lovely holiday season with my family, and hope to have many more. Thank you to everyone sending their love and support. It means so much to me!

My wishes for you....
Enjoy the moment.

Play.

Love.

Laugh.

Make mistakes.

Be bold.

Say yes.

Live.

And never pass up the opportunity to pee.*

Happy holidays!

*My old friend Dan gave me this piece of advice many years ago, and I have found it to be surprisingly useful in day-to-day life. You kinda have to pee, but think you will just wait to get home - just take Dan's advice and go now. Your bladder will thank you. 

Xalkori - What a Joy, What a Pain

The past few weeks have been pretty challenging. The side effects from my new superdrug, Xalkori, hit me hard. Hats off to fellow stage IV fighter and Xalkori user Kim (you can read all about her at aquariusvscancer.com), who warned me that I should give myself a good month to settle into the side effect routine with this drug. Boy, was she right.

I've had a crazy number of side effects: nausea, vomiting, reflux, taste changes, constipation, diarrhea, stomach cramps, dry eyes, blurry vision, achy knees and hips, fatigue, and strange strobe-like visual effects.

That last one is pretty fascinating. When I have been in a dark room for a while (such as watching a movie) then move into the light, for a few minutes I get tracers around moving objects, sort of like those stroboscopic photos I remember seeing in Boston. I went to the eye doctor to check out my intermittent blurry vision and he determined it was because of how dry my eyes are ("they look like stucco"). While a variety of eye drops can help with that side effect, he said he was not sure that he could do anything about the strobe-effects. "Oh, that's fine," I said, "I kinda like those."

The taste changes are mostly just annoying. At first I thought I had burned my tongue, because everything seemed to lack flavor. At the same time, things took on this strange, overly-sweet artificial-flavor, like eating sweet plastic. The only things that I still enjoyed were salty and bitter things. Not a big deal, but a bit disheartening when I was already struggling to eat.

The stomach stuff has been the real challenge. Weeks 1 and 2 were really rough, when I felt nauseated pretty much all the time. I would also get these terrible stomach cramps, followed by (excuse my bluntness) horrible gas. In a house with two kids in diapers, we are not subtle when we smell something foul. There were several funny moments when I was curled up clutching my stomach, and Jason started checking the girls' diapers. "Okay, who needs a bum change." When no dirty diapers were found, Zander kept looking around the room shaking his head, "Why do I keep smelling something stinky?!?" Then Mikaela came over to me and said, "Mommy, you have a poopy diaper!" Oh, the comedy.

However, things were gradually improving with the nausea when I had a few bizarre episodes. My heart started racing, I had trouble catching my breath, and I got dizzy. About 20 minutes later I felt completely fine. I contacted my doctor to let her know what was going on. She told me to stop taking the Xalkori and come in to see her. When I got to the clinic, I started having another one of the spells, so they sent me to the ER. From there, they said that they needed to admit me to the hospital so that they could keep me on a heart monitor, since Xalkori can have rare cardiac effects.

Of course, all of this happened while Jason was preparing for finals. Really, the best frame of mind for writing your final papers is to get a message from you wife saying that her doctor sent her to the ER and now they are admitting her to the hospital. Ugh. I don't know how he does it.

They ran a gazillion tests on me and the good news is that the could not find anything wrong. My heart looks great, blood work is just fine, the chest CT showed everything was stable with possibly a little more shrinkage (encouraging since I have only been on the Xalkori a few weeks). They think it was probably a combination of dehydration which led to the dizziness and triggered a panic attack. They sent me home with a clean bill of health and a prescription for Xanax should it happen again.

Since then, things have been pretty good, though I still struggle with nausea in the mornings. The trouble is I have never been a breakfast eater (my stomach always feels a little off when I wake up). Now that I need to take these pills twice a day, I need to make myself eat something for breakfast since taking it on an empty stomach is WAY worse. I am finding my way through that, and usually feel decent by midday. I realized that all of the crumminess I feel now is a side effect of the meds, not from the cancer. It is a fine point, but an important one. It feels more positive in some way, and feels like the balance is tipped in my favor.

The strangest thing for me now is that my doctor doesn't need to see me again until after my scan at the end of January. How weird is that? She said as long as I continue to feel okay, I am considered stable so it is just a matter of managing side effects and chugging along.

I am thrilled to give my veins a rest, and I will happily take these side effects since Xalkori gives me another shot at controlling this disease. I am going to try acupuncture since I've heard it can work wonders with digestive issues. I hope I can be one of the lucky ones who can stay on this drug for two or more years.

In other news, this blog got nominated for the "Best of Health Blogs 2013" contest. If you feel so inclined, you can click on the link below to vote. I doubt it will win (the current top-ranking blog has close to 3,000 votes) but it would be cool to break the top 10.

Healthline