Remember Valentine's Day?

 

 

So much to be grateful for! Dan's CT and bloodwork in January were good. The MRI scheduled for February 20th was also good. That one was tricky because typically it takes them a week or more to call with results and this time they called right away. Eeeek! However, no worries. They were just randomly calling early. OK, great. Such scanxiety!

Valentine's Day with Raine was sweet. He got candy and toys sent from his "classmates" (virtual and in-person) and I used Minted to make his valentines so that we could feature a penguin. (Pretty cute, right?)

In other news....This was February:

Visiting the ER at Disneyworld

It was our first day visiting parks and after plenty of fun in the sun at Animal Kingdom, we returned to the resort to eat a snack and make cocktails. I flopped onto the hotel bed and opened my laptop to watch “The Bachelor” (don’t judge). Meanwhile, Dan went with Raine to the hotel pool.

After I finished the episode I had missed, I wandered out to the pool to hang out with them. I was cursing myself because somehow my swimsuit didn’t make it into my suitcase! It turned out I would be glad I wasn’t wearing it because I had an ambulance ride and ER stay in my future.

After I opened the gate to the hotel pool, I found a crowd of people huddled around Dan and Raine while they were sitting on one of those plastic white lounge chairs. Hotel staff, lifeguards, and hotel medics were in front of Dan asking him questions. I didn’t know if something had happened to Raine or Dan. Raine sat quietly with a towel but he was shaking. They all looked at me when I walked up and Dan pointed at me and explained I was his wife. Everyone turned to talk to me and someone informed me that they had just been trying to call me.

A young lifeguard started to share with me her account of Dan on the waterslide, arriving in the pool with a splash and then not coming up for air. She said he was struggling so she jumped in to help him. By the time she reached him (2 seconds according to Raine—”she was like a superhero!” ) he wasn’t breathing so she had to get him out of the pool and clear his airway. He coughed and regained consciousness.

“Daddy went down the slide. He was swimming toward me and then he stopped swimming.””

The lifeguard was still shaking as she spoke with me and I couldn’t help but wonder how someone roughly the same size as me managed to get an unconscious Dan out of the pool. I wanted to hug her and thank her but suddenly all of these people were asking me questions.

“What medications is your husband on?” “Does he have a history of seizures?” The lifeguard had mentioned he appeared as if he was having one. I was surprised because Dan was, in fact, on an anti-seizure medication ever since his first (and only) seizure three years ago. They informed me that an ambulance was on its way and returned to Dan with their questions and concerns.

My beating heart felt like it was leaping from my chest as I sat down with Raine and hugged him. I pulled him into my lap and wrapped his towel around him tightly, rubbing his arms quickly to warm him up. I asked him what he had seen and felt. He explained, “Daddy went down the slide. He was swimming toward me and then he stopped swimming.”

Before I knew it, the ambulance medics were there and testing Dan’s oxygen. It was lower than usual and because he had been unconscious, they recommended he go to the hospital. I called Char and quickly told her to come to the pool. A hotel staff member brought Raine an ice cream bar and I told him I’d be going with daddy to the hospital and he could stay up playing Fortnite with his cousin. When Char arrived, I had her take him and I boarded the ambulance.

On the way to the ER, I made as many jokes as possible and followed Dan’s oxygen level. His arms and hands were blue and he was shaking in his wet clothes. I hadn’t packed a hospital bag for this trip … because, you know, he had already been to the hospital in January and I wasn’t expecting another one so soon. But that is our situation for you. We should be getting hospital frequent flyer points.

Doug would later bring us clothes and dinner while we waited it out. By midnight he hadn’t been admitted but he was having no seizure activity and basically just tired. I had to go back to the hotel to Raine and to get some sleep. The following morning, we expected him to be discharged due to no seizure activity over night and a normal oxygen level. A night’s sleep did wonders for him.

We are grateful to Doug and Rita for taking us with them to Disneyworld. We made the absolute best of it despite our troubles. Maybe someday we can go back and do it a second time without a hospital stay!

The hospital situation became a nightmare and Dan wasn’t released until our last day at Disneyworld. They had no reason to keep him but they did. They were slow to get a CT and even slower to get an MRI, both of which ended up showing no change than the MRI Dan had just had in December. Being stuck in a hospital is pretty common for us but this situation was the worst we had experienced. We feared he wouldn’t get released until the next day and we would miss our flight home. So I cried in frustration, which made Char cry, so she pleaded with staff in tears until the doctor finally showed up and let him go.

“This is our last day of vacation and my grandson is playing basketball in my son’s hospital room with a balled up sock and garbage can. They are supposed to be having fun at Disneyworld!”

It was time to go. Dan and I firmly agreed the accident was due to his vertigo and NOT a seizure. His follow-up at home supported our thought and he has been doing absolutely fine ever since. There has been time for us to adjust to what a scary experience it actually was and Dan is doing well coping by using his sense of humor and talking when he needs to about it. We check in with Raine and answer questions he has. Mainly he wants to know what it was like when daddy stopped swimming.

See photos from our entire trip here!

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.

***

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.

***

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.

***

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.

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!

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.