The Changing Face of Cancer Care

I've had a ringside seat to the evolution of cancer care.

The first time I heard the heart-dropping, stomach-churning, breath-stealing words, "you have cancer," I was 14 years old. The second time I heard them, I was 37.

The first time, a chronic ache in my shoulder turned out to be bone cancer. The second time, a chronic cough turned out to be metastatic lung cancer.

When I was a teenager undergoing chemotherapy for osteosarcoma, I never really thought I was going to die. Me and my teen cancer comrades in the hospital went through hell together. But I naïvely thought we would all get better and go home again one day.

I have seen cancer through an adolescent's eyes, and I have seen it through the eyes of a mom with three small children.

I was a busy mom, working, going to grad school, and raising our four-year-old son and two-year-old twin daughters. I was tired all the time, but who wouldn't be? And I had a string of chest colds that I just couldn't shake. Or maybe it was asthma. But a shelf full of asthma meds weren't improving my breathing. I stopped going upstairs to tuck my son in at night, too winded to read bedtime stories. I couldn't walk around carrying my little girls anymore; I could hardly walk across the room without panting. It wasn't asthma.

"Mama, I wish you didn't have cancer. It was nicer before you were sick."

I was 15 years old and in the hospital receiving chemo when the anti-nausea drug Zofran was FDA-approved in 1991. It was like the clouds had parted and I finally could see a ray of light through these wretched treatments. Prior to that, we had to take our chemo straight up. I spent my first several months of treatment vomiting all day long. Nothing stayed down, so I was sustained by IV nutrition. I roomed with another young cancer patient at the hospital, and she made it into a game; with each new spew, she would tell her mom to add that to the running tally on the whiteboard. Dark humor gets you through some rough times.

I have been cured of cancer, and I have been terminal.

The whole wing of the hospital was silent the afternoon Karen died. She had been in a coma for several days. At one point her hand moved and her little brother took it as a sign that she was waking up. But then she was gone. She wasn't even 15.

Karen was gone.
Cancer is deadly.
I might die.

It’s the first time mortality — my mortality — really sunk in to my 14-year-old mind.

Learning that I had cancer again seemed like some sort of cruel joke. I had already paid my dues, marched through hell, undergone several painful bone surgeries and been declared 'cured.' But it was different this time. This time it wasn't just about me. I had three beautiful little faces looking up at me, counting on me to be around to wipe their noses, kiss their scraped knees, hold their hands during their first heartbreak, and applaud as they received their diplomas. Each dream of the future was being wiped away with each new metastasis revealed on the scans.

Your spine, your shoulder blade, your hip, your liver.

I had kept in Christmas-card-contact with a few of my teen cancer friends. I used to ask after them at each annual checkup, "How's Rob? How's Linda?" But the answers were not always what I wanted to hear.

"Relapse."

"Decided not to continue treatment."

"Passed away just before Christmas."

I stopped asking after that. In those days, we didn't have online support groups, websites listing clinical trials or even iPads to pass the hours, days, weeks or months in the hospital. We had to check out the VCR in two-hour increments and the whole floor shared that one machine.

Now they can test a tumor and sometimes find the specific mutation driving the cancer. If you're one of the lucky ones, there is a pill to target that mutation. So far, I have been one of the lucky ones. But one day, my luck will run out.

My right arm was saved by a cutting-edge limb salvage procedure. My life is being extended by a brand new targeted therapy.

Then we were going for a cure. Now I have learned that 'cure' is not the only goal in cancer care. I have learned that it is possible for the some people to live with metastatic lung cancer as a chronic disease for months and sometimes years.

Cancer research is moving fast. Will it move fast enough to stay ahead of my cancer? I desperately hope so. There are three little people who are counting on it.




Originally posted at: www.curetoday.com/community/tori-tomalia/2015/05/the-changing-face-of-cancer-care

Pointless Brewery & Theatre to explore the intersection of brewing and improv

An interview with Mark Maynard, in which I discuss beer, cancer, Yes And, life choices, improv, and facing challenges head on.

Pointless Brewery & Theatre to explore the intersection of brewing and improv

Breaking Point

My port had stopped working, so they needed to start an I.V. The first nurse had blown two veins and had called in a replacement who was on her way to blowing a third.

In the grand scheme of things, a few needle pokes were nothing. I had been through worse before, and there would be much harder days ahead. But in that moment, it was too much. In that moment, the months of treatment, the endless hospitalization, the constant nausea, and the helplessness were completely overwhelming.  I burst out crying. I can't do this anymore.

My sister, who had been sitting in the chair next to my hospital bed, stood up and walked over to me. She cracked a smile. "Remember that day when we were little kids and we were swimming at the lake, playing Jaws?" I stopped crying and looked at her, confused. She went on to recount in exquisite detail a day years earlier when we had been swimming and had gotten our legs stuck in the weeds and muck at the bottom of the lake and I had thought that a shark was attacking us. She ran around my hospital room, with her fin/elbow on her back, singing the theme from Jaws. Da-dum … da-dum… da-dum…

She had always had a knack for timing, and could change the energy of a room in an instant with her incredible ability to spin a tale. Somewhere between her imitating my 5-year-old squeals of fear and acting out our parents' response, I started laughing so hard the nurse gently said, "Could you please stop shaking the bed?" I toned it down to a hearty chuckle, and before I knew what had happened, the I.V. was in and the fluids were flowing.

Twenty-some years later, my sister is a midwife and every time I think of this story, I know how lucky those women are to have her by their side. In those moments when they feel like they just can't keep going, I am certain that she finds exactly the right words that they need to hear.

People ask me, "How do you cope?" I don't really know the answer, other than I just keep putting one foot in front of the other. But of course, it is not all my doing. I have had times when everything felt like too much and I can't imagine how I could go on. I have been incredibly fortunate to have people in my life, like my sister, who have helped pick up my foot when the next step seemed impossible.

~~~

If you read my last post, "10 Tips for Coping with Scanxiety," then you may recall that I just had my every-three-month scans.

And the results were great!

My amazing targeted med is still going strong after 16 months. There was one little hiccup, in that they found two small blood clots. To treat those, I will be giving myself twice daily shots of a blood thinner for a month, then once daily ad inifinitum. All these needle pokes made me think about the above "Jaws" story from my childhood cancer treatment, and how the cumulative stress of illness can make something as simple as a an I.V. push a person over the edge. Right now I'm feeling healthy (relatively speaking), so I'm fine with some extra needle pokes. But it is easy to see how quickly a lot of little nothings can add up to too much.

Everyone has a breaking point. If we are lucky, we have someone who can guide us through it and help put the pieces back together again.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/02/breaking-point

The "Why Me" of Cancer

Cancer?!?

This can't be happening.

What did I do to deserve this?

Am I being Punked?

Is this my fault?

This isn't real.

Why me?

Cancer. The Big C. The malady that once was only spoken about in whispers. The Voldemort of diseases. With so much fear surrounding this diagnosis, is it any wonder we end up asking, "Why me?"

Why does a 14 year old vegetarian get bone cancer?

Why does a 37 year old non-smoking mom of three little ones get lung cancer?

Why would both patients be the same person?

~~~

When I was diagnosed with lung cancer, the first person we contacted (after my parents) was my pediatric oncologist. Could this be a very delayed recurrence of my osteosarcoma? Was this caused by treatment for my first cancer? Is there something about ME that explains how I got two cancers before the age of 40?

A biopsy answered the first question. No, this was adenocarcinoma of the lung. A totally different cancer than my childhood osteosarcoma.

My pediatric oncologist confirmed that this does not appear to be a late effect of prior treatment. Survivors of childhood cancers do face a slightly increased risk of subsequent cancers, based on what treatments were used for their first. However, the chemotherapy agents I had increased my odds of getting leukemia (very slightly). Lung cancer is nowhere on the list.

The third question was a bit trickier. She told me that I needed to get tested for Li-Fraumeni Syndrome, a rare genetic condition that makes a person highly prone to developing any number of cancers. The most worrying part about this is that I have three children. If I tested positive, each one of them would have a 50 percent chance of inheriting the syndrome.

How's that for maternal guilt?

Fast forward through CT scans, PET scans, a second bronchoscopy, genetic counseling, and sending DNA samples to be tested for Li-Fraumeni.

The bad news: the lung cancer had spread throughout my bones and into my liver. Metastatic. Stage IV. Incurable.

The good news: I do not have Li-Fraumeni. So, as far as they can tell, the second cancer is not part of a syndrome that my kids could inherit.

Those are some pretty heavy scales. But they tip in favor of the good.

That brings us back to the why.

The diagnosis of lung cancer carries with it a great deal of blame. There is the sometimes-spoken-usually-thought question that lung cancer patients face: did you smoke? While it is certainly true that some lung cancers are caused by smoking, 10 to 15 percent of people diagnosed have never smoked (like me), and another 40 percent have quit and were living smoke-free. Also keep in mind that the older folks started smoking when it was the norm (seriously, even doctors promoted smoking back then). Sadly, lung cancer kills more people than any other cancer – more than breast, prostate, and colon cancers combined. Despite this, lung cancer research receives a fraction of the federal funding of other cancers. And it boils down to blame.

~~~

Why me? Why did I get cancer?

Well, it must be because you smoked. No?

Well, then it must be caused by previous treatment. No?

Well, then it must be caused by a genetic condition. No?

Well, then it must be caused by lifestyle choices. No?

Well, then it must be caused by second hand smoke. No?

Well, then it must be caused by radon. No?

Well, then it must be caused by pollution. No?

Well, then it must be because you prayed to the wrong god.

Well, then it must be some sort of cosmic joke.

Well, then it must be punishment for mistakes in a past life.

Because it must be YOUR FAULT.


I don’t think people follow this line of thinking to be cruel (most of the time), but rather to distance themselves from the illness. I didn't do X, therefore I could never get Y. I'm safe and can carry on without worry.

Every day we make choices about how we live. Did you choose the salad or the steak? Did you ride your bike or drive? Did you sleep a full eight hours? Did you meditate? Did you exercise?

Of course we should make healthy lifestyle choices. But we are all human, wonderfully beautifully flawed human beings. And sometimes even when you make all the "right" decisions, life has other plans.

~~~


So, why me?

Why me?

. . .

Why does it matter?

What about you? Have you had a "why me" journey? I welcome you to share your story in the comments.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/the-why-me-of-cancer

Repeat Visitor to Cancerland or The Worst Vacation Destination Ever

One of the things I love about reading blogs is their immediacy. They are typically written in a moment of heightened emotion, in response to a life event. They are raw.

In my new adventure blogging for CURE magazine, I am going back to the beginning of my cancer journey to catch those readers up to where I am now. I am able to reflect on moments that were too intense at the time to fully process. In my first post, I talked about the terrible moment in May of 2013 when I was diagnosed with lung cancer. The overwhelming emotion at that time was shock. I felt frozen and unable to think clearly. Looking back now, I can attempt to explain what it felt like, hopefully reaching out my hand from the shore, helping others navigate that awful fog.

I realized that I couldn't talk about my current adventure with cancer without revisiting the first time, twenty some years ago when I had childhood osteosarcoma. So here is a glimpse at the early days of diagnosis, the first time around.

You Have Cancer. Again.

If that link doesn't work, try this one. You Have Cancer. Again.

That's Great It Starts With An Earthquake

I was jolted awake by Michael Stipe serenading me with "It's The End Of The World As We Know It" and immediately remembered my sister telling me she had been listening to that song some 20+ years ago when our mom called to tell her I had been diagnosed with childhood bone cancer.

Really poor song choice for my alarm this morning, a day when I was waiting for scan results.

Two years ago today I had just returned from the AATE conference, where I had met all sorts of impressive folks, the leaders in the field of Theatre for Young Audiences, and had received an award as one of the up-and-comers.

And today I spent the day at the cancer center.

The results of my scans were mixed. The lungs look stable with a bit of shrinkage on the remaining spots (yay!) and the brain scan was clear (big yay!). The questionable area was my kidneys. There might be something suspicious on them, but they consulted with several radiologist and they couldn't agree if they were really seeing anything or not, so I am heading in for a PET scan next week to get a closer look.

They take away was don't panic yet. It might be nothing. I'll be busy celebrating my wonderful son turning 6 this weekend, so I will keep myself occupied with that. It was this same weekend last year that I was waiting for my first scan results after starting chemo, and I got pretty remarkable results on Jason's birthday (which is just 2 days after Zander's). I hope Jason gets another great birthday present this year. And maybe next year let's plan the scans on a different week.

~~~~~
This song has been going through my head, after the terrible news about Robin Williams. (He was my second choice for my Make a Wish when I was a kid, but Winona Ryder agreed - and we had a lovely day.) What a remarkable actor and comedian, and what a terrible loss to us all. My heart aches for his family and those close to him. I sure hope heaven is real, because he is someone I would really like to meet someday (but not for a long time).

The best of times is now.
As for tomorrow,
Well, who knows? Who knows? Who knows?
So hold this moment fast,
And live and love
As hard as you know how.
And make this moment last
Because the best of times is now.

What Are The Odds

I've been reading a book as research for a wonderfully terrifying endeavor Jason and I are working on* and I came across a section that talks about the poor odds of a small business succeeding.
*More on this soon, I promise! There is lots of good stuff a-brewing.

I couldn't help but chuckle.

That's supposed to scare me? You wanna talk to me about long odds? So I did some digging. (Okay, googling.)

For every 10,000 kids in the US, 1 or 2 will be diagnosed with cancer each year.
That's a 0.01-0.02% chance.

Let's narrow it down to osteosarcoma, my childhood cancer. In the US, there are about 5.6 diagnoses per million people each year.
That's a 0.00056% chance.

About 2 out of 10,000 people will be diagnosed with lung cancer before the age of 40.
That's a 0.02% chance.

Now recall that I have a rare driving mutation, ROS1, that occurs in about 1-2% of non-small cell lung cancer.

Then there are the gulp-worthy stats about lung cancer survival times, and I have already (THANKFULLY, CONTINUING TO KNOCK ON WOOD) made it to the good side of the median.

For something more fun, let's consider the odds of having identical twins: 3 in 1,000, or about 0.3% chance.

The odds of all of these things happening to the same person?!?

All of this is to say that when I read that 80% of small businesses fail within a year, I see that 20% are still around a year later! Those are some of the best odds I've dealt with in a while.

I don't mean to be cocky, it's just that odds have continually proven to be meaningless to me. Also, tomorrow is my 3-month scan, so I think the nerves are making me punchy. Fingers crossed for good results on Tuesday! Let's keep beating the odds.

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. 

Cancerversary

23 years ago today, at age 14, I was diagnosed with osteogenic sarcoma of the right humerus.

It is strange that now I have to refer to that as "the first time I had cancer."

I recall driving to the biopsy early that October morning, when the first fingers of Minnesota winter were really starting to grip the state, covering everything with frost and making the air harsh and brisk. I looked out the window and thought to myself, quite dramatically, "thus begins the winter of my life."

The doctors very strongly suspected that the biopsy would come back positive for cancer, and told me they would be able to tell by looking at the specimen for just a moment under a microscope, so the plan was to keep me under anesthetic and put in my port once they confirmed it was positive. I remember waking up after surgery and feeling for my new port. It was there, so I knew my answer. "Here we go." I fell back into my groggy slumber.

What followed were 11 of the hardest months of my life. I seemed to get every rare complication from the chemo drugs, so much so that at the end of my treatment, one of my oncologists remarked, "When I told you all of the possible side effects, that wasn't meant to be a challenge!" My chemo was all inpatient, with five days in a row of infusion. After every cycle, without fail, my counts would drop dramatically and I would come down with an infection which would keep my in the hospital until it was time for the next chemo cycle. I was so violently ill from the chemo that I was fed via IV for months, and still lost 30 pounds. I spent virtually a whole year in the hospital, a building that was less than two blocks from my home.

I remember arguing passionately on Christmas eve day, begging them to let me go home so that I could wake up in my own bed on Christmas morning. First, they said, I had to prove I could eat and drink. I set to that task with great resolve, and later that afternoon proudly told them that I had kept down half a glass of water and one and a half saltines. At that time, it was a huge accomplishment, and somehow they agreed to let me go home. I spent a lovely 24 hours with my family, opening presents, and having a fairly normal Christmas before checking back into the hospital that night.

Not surprisingly, my second dance with cancer has led me to reflect on that time a lot, and I keep wondering if there are others like me out there who won the battle the first time, then got reenlisted into a whole new fight. At my follow up appointments when I had finished treatment, I used to ask about the other young cancer patients I knew, until one day I was told that two of them had their cancer recur, and one had passed away. I stopped asking after that.

I have only kept in Christmas-card-contact with one of my old cancer buddies, and while I would love to talk to her, I think it would be kind of cruel to call her up and say, "Hey, remember when we went through hell together, then got cured and went on with our lives? Well, it can come back in a whole new form!"

In some ways, I am thankful that I have my first experience to think back on, because I know just how much I can handle (a lot). So far, at least, this hasn't been nearly as terrible as that was. Side effect management has improved by leaps and bounds, and I am currently on a fairly tolerable chemo triplet. I know that things will get a lot harder. But I am also older now and have a lot more life experience. Most importantly, thought, I have three little ones who keep me very grounded in the real world of day-to-day life. They are three small people for whom I would do anything.

An Exciting Time to Have Cancer

I am realizing that I have been, perhaps, too delicate in describing my health situation. People keep asking me questions that indicate that I need to be more blunt about the current state of affairs. 

So here are the bold facts, no holds barred:

I have Stage 4, metastatic adenocarcinoma, a non-small cell lung cancer (NSCLC). It is incurable, and considered terminal with an average life expectancy of eight months. Since there is no cure, there is no end date to the treatment.  I will continue to have chemo (or other treatments) for the rest of my life. There is no plan to do surgery since the cancer has already spread throughout my body, making removing it from my lung pointless according to current thinking on the subject.

As of my last CT scan, my current chemo regiment appears to be working. This is a great thing, but it is by no means permanent. The tricky thing with cancer is that is can mutate and become resistant to the chemo at any time. 

I am currently on a triplet of chemotherapy drugs: Carboplatin, Pemetrexed (brand name Alimta), and Bevacizumab (brand name Avastin). The standard treatment is to do four rounds with this trio (assuming it continues to work) and then go onto maintenance of Pemetrexed for as long as that keeps working. 

At my last appointment, my oncologist suggested that I do two additional rounds of this powerful trio since it seems to be working and I am tolerating it. I am totally on board with this decision, and actually walked into the appointment armed with a list of arguments to convince her of this approach. I was pleasantly surprised when she suggested it before I had a chance to launch into my pitch.

Let me back up for a moment and clarify what it means for the chemo to "work." There are essentially three possible verdicts from a CT scan.

1. The cancer is shrinking

2. The cancer is stable, meaning neither shrinking nor growing

3. The cancer is progressing, meaning the current tumors are growing and/or there are new metastases. 

My first CT showed verdict #1. Yay! In order to continue on the current line of chemo, you need either verdict #1 or #2. If you get #3, then you need to pursue other options. These take the form of other chemotherapy combinations or clinical trials. 

And that brings me to the title of this post.

I am discovering that a whole lot has changed in the 20+ years since I had treatment for my childhood cancer. Not only do they have MUCH better methods for managing all the terrible side effects of chemo, the whole way of thinking about treatment is undergoing an interesting and exciting shift.

It used to be that the three tools for cancer treatment were to cut it out (surgery), burn it out (radiation), or kill it with poison (chemotherapy). While these three are still used extensively, there are a few new approaches. For example, one of the chemo drugs that I am on, Avastin, is technically not chemo at all, but biologic therapy. Rather than killing the cancer outright, it starves it by preventing it from creating blood vessels to feed the tumors.

Another very exciting treatment is based on finding the driving mutation of the cancer, meaning figuring out what went wrong to make it grow out of control, and stopping that mechanism with a targeted drug. There are two well researched mutations for NSCLC, EGFR and ALK. My cancer does not show either of those mutations, but there are many others being researched currently. If we find my driving mutation and match it with the correct drug, controlling my cancer could involve a daily pill, with fewer side effects than chemo.

The third, and perhaps most innovative line of research involves using the patient's own immune system to track down and kill the cancer. There is a trial for this therapy going on in Karmanos, just down the road in Detroit. My doctor and I discussed at my last appointment that this is a possible option for me if/when the time comes to switch to a new plan of attack. 

So, although the prognosis of my disease is pretty much horrible, I do not feel entirely foolish for remaining perpetually optimistic. With all the changes going on, the statistics are becoming outdated. Also, I am young (the average age at diagnosis is 72) and healthy (I mean, other than the cancer!), which will (hopefully) put me on the good side of the bell curve.

-----

A few days ago, Mikaela had a follow up appointment with her cardiologist and we learned that the last of her premie issues has resolved. Resolved. Over. All those nightmarish months when we prepared for the worst, not sure if the girls would survive, and if they did what sort of lives they might have. Now, they are simply two happy, healthy, and dare I say adorable little two year olds.

No one knows what the future holds.

I hesitated quite a bit before posting this, knowing that it is a lot if information to digest. But I believe it is best to face the truth, and step boldly forward.

My next scan is on Friday, September 27. We will get the results on October 1, and if things are still working I will begin my next round of chemo that day. Thank you for all the well wishes, prayers, good vibes, FOOD, and endless love and support. I am so fortunate to have so many wonderful people in my life. You are all superheroes.

It's okay, even superheroes get tired sometimes!

The Time is Now

I've always had issues with the advice, "live every day as if it were your last." Do you realize how messed up the world would be if everyone did that? If we all knew the world would end tonight at midnight, no one would go to work, people would spend every last cent they had, it would be anarchy - sparklingly beautiful anarchy, with drunken revelry and dancing in the streets . . . maybe that doesn't sound so bad after all. But it would be not be conducive to any sort of modern society.

-----

Sorry I haven't written for a while. I have been going through a lengthy maze of testing, including genetic testing. The odds of someone getting two unrelated cancers by age 37 are so astronomically low that they were certain there must be an underlying genetic predisposition to cancer, namely Li–Fraumeni syndrome. It is a pretty scary disorder that makes a person very prone to developing any number of cancers. And it is inherited.

The good news (the GREAT news) is that I do not have that syndrome, meaning my kids are not at risk. It was a major relief to hear that. 

-----

We got some pretty hard news today. It turns out that the cancer has, in fact, spread to several other sites throughout my body. So, the initial radiation/chemo plan is out, since we are no longer dealing with a single tumor. I will instead begin chemo on Monday. They will do two rounds of that, then do more scans to see if the cancer is responding. 

To all those people who have offered good wishes, prayers, and healing vibes, the time is now. Monday morning the battle begins. Get out those lucky rabbit's feet (not so lucky for the rabbit!), bang your drums, light incense, wish on a star, whatever way you know to try and tilt this fight in my favor. 

I'm an anomaly already, so I can surprise them again, right?

Cancer Update (ooh, I'm getting bold about the word!)

Thank you, everyone, for the outpouring of support. It has been just wonderful and I am humbled by the generosity and love from all over the world. I am reminded once again what an amazing community I have around me, both near and far. I am one lucky person. I am trying to reply to everyone, but I apologize for being slow about it. Sometimes this is all just kind of ... a lot.

People are asking for details so here's what I know so far. It is adenocarcinoma of the lung. There are a few lymph nodes in my lung area that are affected, but there is no sign of cancer anywhere else. The treatment will include chemo and surgery, and possibly radiation. I have no idea what caused it, and it is unrelated to the cancer I had when I was 14 (osteogenic sarcoma - bone cancer - in my right humerus). I also have no idea what caused that either, by the way. I'm meeting with the oncologist on Tuesday to lay out the detailed plan, and chemo will most likely start right after that.

As for how I'm feeling, well, I'm all over the place. 

I am ready to fight. I know I am strong, and I can make it through this. Hey, I did it once before, and I am a tougher person now than I was then.

I feel really, really sad that my family has to go through this mess. I hope the girls are too young to remember much of it. Poor Zander has taken me to the ER more times than anyone should have to experience.

I am totally dumbfounded that this is happening again, and I wish I could point to a cause. Did I get struck by lightening twice? Maybe I should buy a lottery ticket.

And there is a part of me, deep down, that is absolutely, completely, paralyzingly terrified. Terrified of possible outcomes that I don't even want to give voice to. Terrified of walking back into hell, but this time my eyes are wide open with the knowledge of just how dark this road can get.

Is it better to know? 

A lot has changed in the 20+ years since I had chemo as a kid. I understand that adult chemo is quite different than childhood chemo, and that some adults continue to live fairly normal lives during treatment, so who knows how all this will play out. 

I keep thinking about 14 year old me. Then, I was so upset to lose my hair. Now, that is such a minor concern it seems trivial. Then, I was so scared of hospitals and needle pokes that I thought I would rather die than go through that. Now, I will walk willingly into any fire, just let me live.

For the record, I still don't like needles.

The Plural of Apocalypse

I lead a pretty golden life. I have an amazing husband who balances out all my quirks perfectly, I have three wonderful and sweet kids, things in the school/career realm are coming along well with all sorts of exciting projects and positive response, my parents and siblings are each incredible individuals and make up a pretty stellar family. As I said to Jason, "I guess there had to be some yang to balance out all this yin."

"Yeah, but this is some pretty f&$!ed up yang!"

Like I said, we are a great match.

...............

So I have cancer. Again. Pretty mind boggling. And it is totally unrelated to the cancer I had as a kid. I keep thinking I'm being Punked.

But, so it goes. The doctors are working on a plan of attack. Running more tests. Gathering information. 

Preparing for battle.

I feel like Buffy. Give me something pointy and tell me where the Big Bad is. I just never knew I would need to learn to plural of apocalypse.

Simplicity of Purpose or Life as a Human Incubator

These past few weeks in the hospital have given me a very simplified way of approaching each day. Essentially, my one purpose right now it to keep the girls safe for as long as I possibly can. It is a strange feeling, knowing that I really only have one goal each day. And every morning that I wake up still pregnant, I have completed my goal for the previous day. It kind of reminds me of when I was on chemo (though that was WAAAAY more crappy) in that my one goal then was to get better. Every day that I got through another treatment or got over another infection brought me one step closer to a healthy outcome.

We are at 31.5 weeks now, so every day I feel a tiny bit less terrified. I realized that I had my first hospitalization at the beginning of December, which means that we've been living with this worry/danger/stress constantly hanging over our heads for three months. Yeah, it hasn't been a very fun pregnancy!

Living in the hospital has given me a deeper understanding of what it feels like to be a two-year-old. As I mentioned in the last post, one of the few things I'm allowed to do is walk across the hall to refill my water cup. So when a thoughtful nurse goes and gets a fresh cup of water for me, I kind of feel like stomping my feet and yelling, "I can do it BY MYSELF!" the way a certain two year old I know does. Most of the time I try to jokingly explain that I have permission to go to the water area so I really look forward to it, but it gets tiresome to explain that every 8 or 12 hours at shift change.

On a happier note, this hospitalization has shown me that we really have become part of a community here. I'm not sure when I stopped thinking of myself as being new in town, but somewhere along the way my family developed a nice group of people who have shown their lovely support through this trying time. Thank you to everyone!