Talking to Raine About Daddy's Radiation

It was a quiet Monday night. We finished dinner and Raine was anxious to watch the tv show The Voice, his latest obsession (he is rooting for Noah). Rather than head for the living room, I asked him to stay at the table for a talk. I was flying by the seat of my pants in an attempt to tell him about Dan’s radiation appointment the following morning. Dan didn’t even know it was coming.

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First, I busted out his creepy puzzle that reveals all of the anatomy of our bodies. It lets Raine place puzzle pieces in layers–skeleton, organs, muscle, and skin, as well as the clothing worn on the outside. (Made by Hape, you can find it here.)

As he put the puzzle together, I told him daddy would have a doctor appointment in the morning that would be radiation for his brain. We looked at the brain piece of the puzzle and I said it would be like super cool lasers as medicine for three places in daddy’s brain.

Second, I had him look at our Kimochis® emotions. (You can find them here.) This is the first time I used them and it went really well. First Dan and I picked ones that showed our emotions about the procedure. Then Raine chose Scared, Shy (he had it equated with feeling uncertain) Grateful, and Loved.

Third, I asked him to help me think of ways that we could help him with his emotions. We made a list for each one:

Scared – Have daddy tell him all about it when it is over and answer any questions Raine has.

Shy – (Uncertain) Hugs before school.

Grateful – Make a thank you card for the surgeon.

Loved – Hugs AND kisses after school.

He made his card for the surgeon and then spent a solid twenty minutes in a competition of throwing the plush emotions from the dining room to the front door as far as he could.

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On the way to school in the morning, Dan sent us pictures of him getting ready for radiation. Of course Raine wanted to know if it would hurt. We told him no. (The pins Dan would have drilled into his skull would actually be one of the most painful things he has ever experienced. But would you ever let your kid know that? Nope.) We tried to emphasize daddy was fine because he was smiling and looked a little silly. Raine was still scared for Dan, and about it hurting. He told me he hopes he never has radiation. I agreed that I hoped I never would, too.

So the photo backfired…Later that day, I asked Raine how long he was scared or worried and thinking about daddy while at school. He honestly informed me that he did all morning–until his favorite time, recess and lunch. However, that night, even with Dan in bandages all over his head, Raine felt ok because he knew why they were there, Dan answered all of his questions, and Raine received lots of hugs and kisses from mommy.

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Raine is 6. He is very aware of how we act and what we talk about when we think he isn’t listening. He is picking up more references to cancer–particularly during the 2,000 commercials about cancer drugs during one episode of The Voice. Dan and I had the equivalent of scanxiety x 1,000 leading up to radiation and everyone can feel that–even Rocco, who paced and howled more than usual.

I want Raine to know when Dan is having treatments and help Raine understand what will happen. I want him to be prepared. I want him to feel included. This is big stuff, after all. Big stuff I would rather he not have to deal with–but this is our family and our journey.

Medical Update || Some Zapping

We are pros at waiting in doctor offices...

I suppose I could have waited one day for the update, but for once I wasn’t on top of my game and didn’t even realize there was an appointment this morning at the gamma knife center. I thought Dan was only getting an MRI, but he was actually discussing the results of last Tuesday’s MRI.

The decision is to perform targeted radiation. The focus is three areas, two of which could have been remnants of his original mets that were initially treated when Dan had whole brain radiation. The third is the spot we recently decided to watch more closely. This doctor wants to target it now and not wait and watch.

Radiation. Dan calls it zapping. I believe it is a good choice to zap right now…But again, change is hard so I’m doing my best to be brave.

Medical Update || More MRIs and Stopping Chemo

“And one has to understand that braveness is not the absence of fear but rather the strength to keep on going forward despite the fear.” – Paulo Coelho

Based on MRI results in August, we spoke with our new radiation oncologist, Dr. Mackenzie McGee with OSF, as well as the opinion of Dr. James L. McGee, and have increased the frequency of these scans and now have them at the gamma knife center in Peoria. There is a spot that could be brain mets but it hasn’t changed recently. It will be more closely monitored if they find enhancement, gamma knife radiology would be the next step.

In other news: With a decent amount of trepidation, we changed Dan’s maintenance therapy. He stopped chemotherapy (an infusion of Alimta [pemetrexed] every three weeks) and started Alcensa [alectinib], an oral medication. 

He had success with Alimta for 30 months straight. It is no cakewalk, so somebody get this guy a trophy. I’m pretty sure he set a record anyway.

Despite the success, together with Dr. Kumar, we chose to have Dan begin taking Alcensa because his chronic infections were getting increasingly tough to manage and affecting his quality of life. Last year, Dan endured six months of recurring cellulitis with two hospitalizations for drip antibiotics. He has had five months of the infection so far this year with multiple outpatient drips and constant, increasingly stronger, oral antibiotics. My fear of an antibiotic-resistant super-infection began to really stress me out and Dan was tired of it all on top of chemo side effects every three weeks.

While there are patients who only have the option to stay on Alimta, Dan has a few more. So we are more than astoundingly grateful.

[Disclaimer: I’m going to go into these options and if that is boring, you can just skip ahead.]

He is one of the 5% of patients with adenocarcinoma NSCLC who have the ALK gene, and there are several targeted medicines for it, referred to as “ALK inhibitors.” The medicine turns the gene “off” to temporarily stabilize the cancer. The first of these, Xalkori [crizotinib], was developed by Pfizer and approved by the FDA in 2011. I say “temporarily” stop the cancer because the cancer inevitably resists the medicine. Because of this, Novartis developed Zykadia [ceritinib] as a second line treatment, offered in 2014 after only a mere three years from clinical trial to approval. (This year, Zykadia was also approved for first line treatment.) Along with Zykadia, Alcensa [alectinib] was developed by Chugai (Japan) and then also fast-tracked in the US for approval in 2015. That is the one we are going with first.

I want to emphasize; Three life-prolonging medicines were developed and approved for Dan’s specific cancer within four years. That is crazy.

 Alcensa – structurally – there it is for any of you science nerds.

Anyway, once the financial aid was approved, we took the leap and Dan took his first dose Friday, October 6th. So now we wait to see how/if it works and what side effects he will experience. Three weeks in, it is the usual suspects–fatigue and constipation–but no nausea. Edema continues, which increases the chance of cellulitis, but so far so good. His is still on his daily antibiotic. He will have blood draws every few weeks to keep an eye on the usual numbers as well as new liver and muscle enzymes to watch.

And that’s the latest! More soon about what we’ve been up to and how Raine and I are doing. Thank you for taking the time to read this and for keeping us in your thoughts.

After MRI Results

Dan is super chill. There just isn’t much that can ruffle him. He gets scanxiety (scan anxiety) just like the best of us, but he never really worries or freaks out. The only way I know how to describe him to people is that he is “zen.” There’s not much that can ruffle his feathers. He keeps an even temper, always maintains his sense of humor, and is focused on the simple things each day.

I know this sounds super amazing–and I get that. However, I just have to share a caveat that I am MARRIED to him and have loved him for nearly 15 years and that which is the best about him is also what drives me crazy. Ha! But that’s another post. So, Dan’s lack of irrational decision making, impulsive reactions, and volatile emotional roller coaster rides gives ME the opportunity to do what I DO best. So here is a glimpse of our lives during the 24 hours following our latest MRI results.

6 Days prior to MRI results: Dan has routine scans, we proceed through the week as normal. I try to get all zen like him and sit on the patio, take in nature, and make sure we enjoy some sex before the chemo treatment (ALERT ALERT ALERT TMI WARNING: Dan is unable to have sex the week following treatment in order to protect me from the chemotherapy that would be transmitted.)

Instead of being super zen, we both end up eating a lot of ice cream, sleeping poorly, and getting into ridiculous arguments like, Who do the black sweatpants in the laundry room BELONG TO? Grandpa Don says they are not his–they have a drawstring and GD’s black sweatpants do not. Dan says he doesn’t even own sweatpants, black or no. When casual around the house, he only has a pair of pajama pants. I KNOW Dan actually has black sweatpants. Back and forth. Just claim the effing sweatpants!!!

On Wednesday at 11 am, I was at work while Dan was at the doctor office for results during an appointment with the onc before his chemo treatment. Jim and Char were in town for the results, so he wasn’t alone. (I don’t like it when he is alone and gets news. He was alone with his actual diagnosis and that haunts me.)

A new tumor in his brain that has sprouted and chillaxed since his last MRI requires a consultation with the oncology radiologist. Then we will decide if we want to do targeted radiation (as opposed to whole-brain radiation; this would isolate the cancerous cells) or wait and watch it.

He texted me immediately so I knew. I call and we chat.

I focus on my tasks at work. I keep busy and I do NOT think about it. All afternoon, my IBS kicks it into high gear. I steal a moment to text a few people the troubling news. Ugh. Once home from work, I begin consuming alcohol. I have a stellar Revolution IPA 12 pack in the fridge at my fingertips. The weather is nice so I sit on the patio and talk with a friend that I contacted immediately for such a day as this.

Like a genius, I decide to drink beer for dinner. Weget Raine to bed, and of course, he has no idea what is going on. We read, laugh, and cuddle. Dan chooses beer over ice cream and we finish off the second season of Master of None. That’s a really good show.

The following morning, I actually manage to get Raine to school on time while Dan takes a substitute teaching job. I worry about him being on his feet all day. At home, I sort through and organize all of our medical bills, only to abandon them instead of paying them. I attend a (well-timed) therapy session, which has a two-fold gift; I cry with grief for the overwhelming and desperate desire to have my mom back, right before I enter the office. (I haven’t cried for her in a while so it was definitely needed.) And throughout the session, I become increasingly hopeful as I remember ways that I have been creative with writing and sculpture–and how that creativity helps me cope.

But then—A shopping binge at Target. Resume drinking at noon. Chat with my sweet friend on her porch.

Then I climbed into bed, read, and then fell asleep. Sometimes that’s it—The crisp, cool sheets, a blanket with a familiar smell, and lazy reading with big, thick glasses. It’s medicinal.

Tomorrow is another day.

My MEGA Blog Post

We have enjoyed a beautiful start to Spring here in Carlton, Oregon. Raine enjoyed celebrating Easter with egg hunts, gifts, treats, and time with friends. Dan’s exam and maintenance chemo treatment on the Friday that followed Easter was without concern or change.

For Christians, Easter is a celebration of Hope. I remember learning about Easter’s entire procession as a child in Sunday School. What stood out to me was the palm fronds waved and placed in adoration of a spiritual leader. And then the death of such a beloved teacher and inspiration, to be followed by the mystical resurrection of his body. It was fascinating for me to contemplate as a child, and while I was learning about Christ in a Protestant church, Dan grew up learning about him in a Catholic Church. No matter the dogma, it was a holy week.

As adults, Dan and I don’t attend church. We don’t ascribe to a particular faith. We are teaching Raine what we have passed down as traditions in our families and focusing on emphasizing the central theme. Do unto others. (Don’t be mistaken that this teaching is too simple.)

At this point in our lives, what does Easter mean for us? What does Hope mean for us? A family living with incurable cancer?

Hope can be a very bruised emotion that is absolutely courageous to develop. And it can be stolen from us–how despairing is that moment! When it is taken from us, we starve. But even those of us starving manage to survive! When I feel completely afraid of living, uncertain that I can navigate the moment that breaks what I know and cling to, I seek out those who survived amidst losing hope. I read Elie Wiesel for the first time when I was 17 and the words pierced me for the rest of my life. Because of him, I believe there is never a burden so great that we cannot bear it. For even if we give into the burden, and we are diminished, we bore it for as much as we could, and there is value in that effort, no matter how small. It is a choice we make to carry on, whether or not there is a reward, or improvement. We strive to live, an act that we consider so simple that we can’t accept that it makes us and our efforts no greater than that of an animal. We don’t need Hope to survive. But with Hope we honor ourselves and the process we are experiencing. It is for a greater good. (What is the greater good? Pull up a chair and let’s discuss.)

Dan was diagnosed with Stage 4 Lung Cancer (Metastasized to his Brain, Lymph Nodes, and Spine) 18 months ago. What has been our source of Hope? Sharing our story. This is not uncommon. How do we do it? Every day since his diagnosis, Dan has worn a wide turquoise band reading “End the Stigma.” If someone should point to his bracelet, he can educate them about his cancer. I am writing this blog post. I am sharing our realty as best I can find the words. Because we are more than a diagnosis. We are more than the difficulty we face.

We are you; do you see it?

Our bodies are designed to survive; the rigorous work of cells and their sacrifice, on an un-ending basis every second of every day–their unison that ushers us into each moment, isn’t our biology Love? Such effort! A holy blueprint to breathe and make choices, alive and changing, giving us moment after moment to exist. We are human and so are you. So tell our story. Understand that our story can be yours. Learn and share. Give us more life in the blessing of your words and anectdotes.

When Dan had a seizure in February, his anatomical reality burst into Raine’s bedroom and altered the very moment and memory Raine had of his ‘nighttime routine with daddy.’ I attended to Raine with every fiber of my mothering-being in those moments between seizure, recovery, medics, and an ambulance taking daddy away, while also attending to my distraught husband and reminding myself to breathe, and this taught me: Yes, we live through it. We bear it. We trust what it is given to us and we make sense of it to keep going. Hope was the moment of wishing Raine could make sense of it all with my body next to his. I did not promise him anything. I lay with him in the bed and stroked his head, answered his questions, reminded him I am with thee. And the beauty and joy of hoping in something beyond what we can see is just that— I am with thee, whether I am seen, whether I am in a physical body, or not. I yearn for more compassion in our world because of this simple moment with my son.

Dan has been unable to drive for the past six weeks. This has meant he has traveled to and from work relying upon a co-worker, me, or the county bus system. It switched our lifestyle around. It stole from him his independence but gave him the ability to watch the shift of light in the sky or the hawks rising and diving, and listen to music again with his earphones. He started stalking records stores and talking about music more. He had shows he wanted to see. And our date at the Oregon Symphony for The Planets by Gustav Holst moved us to tears.

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Which brings me to our decision to relocate to Illinois. Dan’s cancer is incurable. We have known this since Day 1. There are families who receive Dan’s diagnosis and have no time. We have had the extraordinary gift of 18 months to live here and make more memories on top of our already amazing memories we have made over the past 10 years. What a gift!!! We love it here. We love everyone who has been with us in our journey here. And now it is no longer sustainable for us. Dan has worked as long as he has been able to work without his work taking a toll on him, and I have made my island of support work for me until I couldn’t anymore. It is time to change. As many people are learning, the greater Portland area is expensive to survive in these days and our little family was not set up to survive the hit of an asteroid like cancer. I go back and forth about feeling guilty that we weren’t financially prepared for a life-long battle with cancer but everyone is quick to remind me you just can’t prepare.

And after conversations back and forth over the last year, we are ready to begin a new chapter! We will be in Illinois, living in the greater Peoria/Bloomington area. I will have the support of my sister, father, lifelong best friends, parents of said friends, aunts, uncles, and cousins, etc. Dan has friends from college in the area and his immediate family as well as his relatives will be 2.5 hours north. We need them. All of them! It is as simple as that. We are ready to establish a new life and it will be a new lifestyle, very different from the one we have had (but no less beautiful!) to support our son and our family.

If Dan didn’t have cancer would we be moving? No. Nope! Not at all. (No offense, Illinois).

Is it scary to relocate across the country? Heck yes. I can’t even tell you what my planner looks like these days. Lists upon lists. Calls upon calls. Emails upon emails. Appointments, errands, applications.

Is it the right decision for our family? Absolutely. You can’t deny the feeling in your gut and the vision that carries you forward. It’s that Hope thing.

Are we sad? Of course. This is an example of “Adulting.” You do what you need to do even if it isn’t “ideal.” You sacrifice. Things need to get creative. And honestly, our tears will honor what we built and were a part of for 12 years. I predict that there is no shame in balling like a baby when I drive East on I84.

What is our timeline? The goal-said-balling-driving date is June 6th if not before.

At 11:00 p.m. Monday night, an on-call Cardiologist in the ER explained to us that Dan’s heart was surrounded by fluid, and it was so acute that should we wait for the morning to drain that fluid, Dan’s heart would suffer cardiac tamponade, which meant his heart would likely collapse against the pressure of the fluid and no longer be able to pump blood to his brain and vital organs. This was not planned. This scenario had not been laid out before us as a possibility with his cancer–not because our doctors were ignorant, but because they knew it happens but not always, and they did not want to burden us with worry about something that may or may not happen. I did my best to listen to every word the cardiologist said, but honestly all I could say to Dan after the doctor left the room was that he reminded me of a Portland hipster version of Leonard from The Big Bang Theory. We giggled like school kids even though the weight of the world was upon us. I scribbled notes in my lbnb, alongside notes of inspiration I had been taking on writing a poem about the mystic biology of cells.

A team was called in and an emergency pericardiocentesis was performed, releasing a half liter of fluid build-up from the surrounding heart membrane. Dan spent Monday night, Tuesday, and now this morning in the CICU watching further fluid drip out of his chest. When the fluid stops, he will be able to leave the CICU and hang out in a normal hospital room (At which point we will have friends delivering the food of our choice from Portland restaurants!)

When I came to him Tuesday evening, after securing Raine with a friend to babysit, Dan was sweaty and tired in his blue and white checked hospital gown, surrounded by cannula pushing oxygen, dripping fluid from his heart, monitoring and gathering data. I teased him for adding a cardiologist and the CICU to his resume. He laughed, but it still hurt his chest to laugh. He had a grouchy nurse and you better believe that we worked her over and made her happy by the time we were done with her. He watched his usual Travel channel or Food Network channel, read the music and political magazines that I brought him, ate the ICU-mandated cafeteria meals, and snoozed as much as possible in between interruptions for urinating, checking his fluid bag, and chirps or rings from his cell phone. He is still working full-time.

So let me give you a piece of my Hope:

Wednesday we learn that Dan’s pericardial effusion is due to a random viral infection. He receives antibiotics and it is over. If not, then it is malignant fluid and the cancer metastasized to his heart. He will begin using Crizotinib to treat the cancer and he will have a spectacularly uneventful procedure to create a pericardial window. Regardless, he will come home and celebrate his 39th birthday this weekend with Raine, me, and his lifelong friend, Javeed Shah, as well as Jay’s family, in a gorgeous trip to the Oregon Coast. The weather will be stunning.

I will take pictures.

I will write a blog post about it.

Did I tell you Happy Easter?

HAPPY EASTER.

Happy Friday! Great News!

The results are back and I bet you can guess by our celebratory selfie in the oncologist’s office that they are good!

The MRI of his brain showed NO infection, NO clots, NO new tumors, and all lesions are confirmed necrotic–Dead. “Tumor necrosis” is the fancy medical term for that, and I feel like I want to carry a balloon around today with that written on it! What makes me even happier about this news is that there is also NO inflammation due to the necrosis. High five!

The CT scan showed NO growth and NO new tumors. Double high five! Oh man. So relieved.

Repeat MRI won’t be for 3 months (sweet!) and repeat CT will be routine in two weeks as we now move onto maintenance chemotherapy with pemetrexed (and still the trial drug ruxolitinib). The timeline for this maintenance phase is TBD as we don’t know when Dan’s cancer will progress again. We hope to see at least 5-8 months, which is the average for NSCLC. The greater hope would be 12-24 months! Let’s break the record book, Dan!  Regardless of the time, because of his ALK mutation, when this phase ends, we have two more targeted therapies we can pursue for him that are pill form, already FDA approved, and very promising. (And THEN, two more in the pipeline!)

So today is a good day for our little family living with lung cancer.

Thank you everyone for your thoughts, prayers, super rad vibes, and generosity. We love you all back!

Our 3rd CT Scan

Today we discussed the results of Dan’s 3rd CT scan with Dr. Duffy.

To recap, the very first scan introduced us to NSCLC Adenocarcinoma in all its glory–to me, what looked like splotches of ink and dark blobs inside his chest. Our 2nd scan was the first scan to tell us if “IF” his initial chemotherapy rounds were providing effective treatment. We were pleased to discover –Yes! Dan’s tumors were either stable or reduced in size, including his primary tumor in the left lung. Of course, these are always the results we want to hear! The alternative would be that there are new tumors or existing tumors have grown. The week leading up to a CT scan is torturous for me. I don’t actually even realize it until the few days beforehand (and then I stop being able to fall asleep and notice I am irritable and nervous). It was pure relief to hear today that the cancer is stable. Thank you to everyone for all of your encouragement, positive thoughts, and prayers. We are fortunate that there is no evidence of new growth or resistance to the treatment.

At this point, the reality of his illness is really sinking in during day-to-day life.

Just the last three weeks, we have had to deal with the side effects of his steroid use from his brain inflammation, and the side effects of weaning off of those steroids. He is three weeks past tapering off the steroid, but it is only now completely leaving his system. Combined with very aggressive chemotherapy, it has become tough. He has suffered overall muscle fatigue and especially weakened thighs, resulting in a few moments where he collapses. He has very frequent dizzy spells when standing, so it takes more time to move about after sitting for more than 20 minutes. At this point, he has lost nearly half of his normal blood volume (and is therefore anemic, awaiting a blood transfusion once he reaches the safest level to do so), suffered severe constipation always the two weeks following each treatment, and endured increasingly extreme fatigue and a reduced/limited appetite. On the bright side, we are grateful that his throat sores and thrush have been easily treatable, and that he still has an appetite for much needed nutritious food – fruit, juice, vegetables, and a few animal proteins that will help replace the muscle mass he has lost.

Together with his doctor, we decided to continue two final rounds of this chemotherapy, for optimal results. “Optimal results” continues to be —No new growth, stabilization or reduction. His particular cancer loves to grow and spread quickly like wildfire, and Dan’s genetic mutation (ALK) particularly loves to go to the brain. It is quite The Beast! But so far, treatment is disrupting those plans and our hope is to see a good scan again in 6 weeks and then move Dan to maintenance chemotherapy–kind of like a low grade version of what he has been taking that will work to keep the cancer from progressing. Some stage IV lung cancer patients can have successful maintenance therapy for as much as 12 months on just a single infusion drug –pemetrexed, and this should be the case for Dan as his ALK mutation historically responds well to pemetrexed. Again, that is our hope! And even beyond 12 months! Go Dan! 

We know that the next 6 weeks of treatment on the current chemo (including cisplatin) will be rough, judging by what seems to be a cumulative effect over the past three months. However we are also hoping that the side effects of the steroid will subside. Overall, we do expect him to continue to have the severe fatigue and some discomfort intermittently. His left lung that harbors the primary tumor is still full of fluid and the lower lobe has collapsed. We will have the fluid removed soon and also have surgery to prevent fluid from accumulating again. That will help his breathing and reduce his overall discomfort and risk for infection or complications in his lungs.

We feel like we are in a home stretch now that we confirmed his final two rounds of this chemotherapy treatment. It is going to be tough but we are looking forward to the end result—Getting him on maintenance therapy, seeing his lungs healed from the clots and fluid, and normal, healthy growth of his body’s fast growing cells so that he can enjoy food again and have energy to play with Raine and work more again! I will be calling upon our local helpers much in this next phase, so please use our Lotsa Helping Hands site (sign in to see our calendar of needs). If you haven’t set up your account yet, please do!

Thank you again, to everyone who has us in your thoughts. It matters. It helps. Soon I will share more about that. For now, I am off to bed with the wonderful gift of relief and joy given our results today.

Thanksgiving 2014

One week ago, Dan was hospitalized again. Our experience taught me many things.

#1, of course, again, is that everything around us is beautiful and luxurious. We are so lucky to have everything in place as it is, and enjoy it how we can. The comfort of our own bed, the taste of ice water, the moment when the dog nudges us in earnest, the laughter of Raine. We have a beautiful home. We have a car that isn’t causing us trouble. We have doctors who are a formidable and passionate team. We have each other. There are hard moments where I feel like I can’t reach across my anxiety and fear to get to Dan, but I find a way; I try to bring joy into the moment, I try to confess, I simply touch his beard. I just keep trying.

#2 is that the brain radiation and chemotherapy (Cisplatin/Pemetrexed/Ruxolitinib) is doing exactly what we need it to do–reducing the tumors. After the trauma of learning about his cancer, I was still anticipating more bad news. I was afraid that nothing had changed or that the tumors had grown or multiplied in his brain. Anyone who needs to treat tumors knows that it is a process–Scans/tests, treatment, waiting, repeat. My friend Tina likes to call it a “hurry up and wait” situation. I am a bit of pessimistic waiter. We weren’t expecting to have scans and feedback for another month, but the circumstances that landed us in the ER demanded it. So we are THRILLED that the CT scans and MRI tests showed the reduction of the tumors in his brain. Dan is a very fortunate man to have small side effects from radiation and chemo–some hair loss, a distaste for sugary things, fatigue the first few days after treatment. This is great news that his initial treatment is working and also not causing him to be sickly with side effects.

#3, however, is that Dan has swelling in his brain. This caused his brain to shift off-center in his head. These things caused symptoms of nausea, vomiting, headache/pressure, and affected his handwriting, movements, and thinking. This is actually a side effect of something that is good. A neurosurgeon came on board to consult with the oncologist and radiation oncologist regarding this area of his brain. With an elevated temperature Wednesday, our team had to rule out infection. They did. (Good.) Then together, Dr. Gore, Dr. Duffy, and Dr. Louie agreed that the swollen tissue is caused by the dying/shrinking tumor that it surrounds. The question became, Could steroids alone control the swelling? They hoped so. Dr. Gore gave us time. They sent us home for the next few days to allow the steroids to treat the swelling. We went home with the understanding that if the swelling increased while he was on the steroids, he would need an immediate awake craniotomy, a very “House” or “Grey’s Anatomy” type surgery, where Dr. Gore would remove the tumor while Dan is awake to have cognitive functions preserved.  An MRI was scheduled for Wednesday, the day before Thanksgiving.

This is how happy we were that Dan got to go home. And we were also happy because #4.

Dan’s genetic mutation results from Foundation I came back and Dr. Duffy had just informed us that his tumor has the ALK variation. Dan initially tested negative for this mutation, but the full DNA sequencing confirmed he is one of the 5-7% of NSCLC patients who are ALK positive. Dr. Duffy actually wanted to jump up and down for joy but she refrained. I joked about throwing an ALK celebration party. (I actually might have if I wasn’t so tired…)

Here is a nerdy description of ALK:  “Tumors that contain the EML4-ALK fusion oncogene or its variants are associated with specific clinical features, including never or light smoking history, younger age, and adenocarcinoma with signet ring or acinar histology. ALK gene arrangements are largely mutually exclusive with epidermal growth factor receptor (EGFR) or KRAS mutations [2]. Screening for this fusion gene in NSCLC is important, as “ALK-positive” tumors (tumors harboring a rearranged ALK gene/fusion protein) are highly sensitive to therapy with ALK-targeted inhibitors” (UpToDate).

“ALK-targeted inhibitors” is one of the best phrases I have ever heard in my life. It is difficult to explain the bittersweet relief/joy about learning this information. Dan still has metastasized NSCLC adenocarcinoma. There is still no definitive cure. We have still been given a shorter timeline together than we ever expected. But the best way we know how to describe the good news about this information is that our oncologist now has additional tools in her belt that she didn’t have before, which give us More. Time.

This is the best news we have heard since Dan’s diagnosis.

There are two research hospitals in the U.S. that have been doing groundbreaking work on ALK (MGH and UCD). These hospitals have helped discover and tweak the drugs that have a targeted ability to destroy ALK tumor cells. (Meaning, Dan gets targeted chemotherapy drugs and not just standard drugs that attack healthy cells in his body. SUPER AWESOME.) Currently MGH is researching ways to solve the problem of ALK cells eventually resisting some of these treatments. For example, some patients on 1 particular drug find it effective for only 7 months. Others benefit for up to two years! And there are numerous drugs available to us now already–as in, not in clinical trials or awaiting trials. And, we are keeping an eye on everything that MGH and UCD are doing so that when there are clinical drugs at times when Dan needs new treatments, we can use them. There are many more possibilities now for treatment than there were before. I no longer feel the sensation that we are trying to nail jelly to the wall.

I’d like to take this opportunity, on Thanksgiving, to say how grateful I am for science. How grateful I am for nerdy people who spend their entire lives obsessing over these vital components of our biology. I am grateful for research. I am grateful for medicine. I am grateful for Dr. Duffy, who has spent her career devoted to this science and the stars have aligned for her to treat Dan and help him. We recently learned that Dan and she are linked by two mutual friends. Such a small world we live in, and I find these stars that have aligned to be very bright. I am thankful that she called us today, on a holiday, to tell us that Dan’s swelling has reduced and he does not need surgery.

I am thankful that tomorrow, we will take Raine to Brownen and he will play happily and confidently while Dan resumes chemo. I am thankful that I will get to see the same beautiful trees out the window and while we travel, breathe the damp Oregon winter air. I am thankful that doctors, social workers, counselors, accountants, naturopaths, acupuncturists, massage therapists, dietitians, nurses, friends, family, and even strangers are helping Dan and I with the planting of seeds for cultivating our new reality. It has been a sprout at a time, each day since September 15th–buds in dirt, growing, giving us everything that we need. It may not be the crop I expected, but I will remain grateful for every fruit, trunk, blade, or vine.