Seven Years Living with Cancer

How hot is this guy?

Today, on the first day of October, I caught myself and realized not only have I not shared anything for months on this blog, we also passed Dan's 'cancerversary' last month without any fanfare! Of course, there were definitely celebratory drinks when Dan's scans came back stable again (!) Thank you, Alcensa. Thank you, Genentech. Thank you, scientists. Another round of scanxiety put to rest. We will go through it all again in February.

Good news!!!

The actual anniversary of his diganosis on the 18th found me exahausted and going to bed early during our camping trip. What a party pooper. I was disappointed in myself because I had great plans to celebrate with our neighbors over the campfire and even brought plenty of libations and a "7" sparkling candle. But when you need to get some sleep, you need to sleep. And Dan and I are very generous with each other on that point. He needs daily naps taking Alsenca. And I need them too! I don't have the cancer reason but with my own health problems, I take them. And like I have said before, I will never in my life look back at this time in our lives and regret being at home with him. I will never regret a single nap we took together. If someone wants to make me feel guilty for how I have approached things....staying at home and not working....Their opinion will never matter to me. Or so I tell myself. I do feel guilty for not working...Aren't we our harshest critic?

Camping/boating at Apple Canyon Lake - Livin' the life!

Dan's day-to-day life post diagnosis, seven years later, is a routine built around practical matters and occasional fun. He wakes every morning to get Raine ready for school and provide him with the cereal or pancakes that give him his life juice. Dan takes Stormy for a walk and to the dog park, where he socializes with fellow dog owners in their weird small talk dog-owner world (but he enjoys it). He also takes Stormy to the dog park in the late afternoon and then is home to cook us dinner. Lately he has been spending those afternoons on landscaping work with quite a full schedule, and always spends a day each month substitute teaching at the high school. (As a reminder, he isn't able to work too much or the pay will come out of his social security income). Such details are frustrating but we are grateful for what we are given after his decades long career. When he can sneak away, he golfs, goes to concerts, and gets together with his friends. Most importantly he gets to get out, has purpose, and feels joy in life! 

**I was recently asked what advice we have for others because Dan's cancer has stayed stable for so long.

There is no miracle diet, exercise practice, or even the ideal frame of mind going on here. There is no perfect way to rely on a higher power, and especially if you aren't relying on that higher power 'correctly,' they are letting you hurt. I also never want Dan-or any cancer patient-to carry a cross for their own "win" or cure. You can not control the disease and certainly you don't need to be labeled a "fighter" in a "battle" if you don't want to. You are human and just be yourself. The disease will do what it does or not. 

I hope for every patient that their loved ones understand this and don't put any pressure on them. My honest opinion is the best thing a friend or family member is support the patient in the fact that they don't have control. Help them feel loved and cared for...Because learning something is out of your control is painful.**

What else is there when I consider where we are seven years later...?

We are stronger than ever. There is nothing like a terminal medical diagnosis to challenge the strongest of marriages. I personally know people who saw their relationships end in divorce. What maybe no one would expect is that his diagnosis brought out my strengths but exacerbated my weaknesses--namely my own medical issues. Sometimes I can't believe I am able to operate 'normally' as a person with Bipolar Disorder, Fibromyalgia, PCOS, and Hypothyroidism --thank the universe for medications --- and still feel like I am a capable caregiver and emotional support to Dan. As my weaknesses were stretched to their limits post diagnosis, Dan learned lessons he avoided throughout our marriage about my conditions and what he needed to do to emotionally support me. Three years ago he participated in a group for people who have family members with mental illness. It changed everything. He understood me and my illness in a new way and learned how to better support me.

Cousins and bros!

We have learned over and over again: Take the trip! Make everyone you love feel special! Focus on what really matters to you! It is cliché but we all know it: Life is so short. And not only did Dan's diagnosis teach me that in a new way, but losing my mother young to liver disease a few years ago certainly did. LAUGH AS MUCH AS POSSIBLE. Even through grief and struggle. It saves us. We are lucky that we married because we are both funny to each other. Well, and we liked kissing and stuff, too. REMINDER: make everyone you love feel special. 

Just as we have celebrated Dan's scans, there are people we know and some that I have followed on social media in our cancer bubble and they have passed away in the last two weeks. It hurts. So much. 

Live your one and only life to the fullest!

Raine. At age 10, I think he STILL does not quite understand the impact of Dan's cancer and he doesn't quite know it is "stage 4" or "incurable." It is just normal that daddy has cancer, like his vertigo. It's just the way that it is. Raine will even argue having vertigo is worse than cancer...! He sees the effects of vertigo daily. The cancer...Not so much. The irony is that the chemo and/or radiation caused the vertigo but I don't think I ever explained that. Despite the fact that Dan can't ride a bike or swim in the lake with Raine, or play proper basketball (the extensive steroids lead to shoulder surgery a few years ago and he didn't regain motion 100%) Raine doesn't care! He adores his dad. He still sits in his lap, talks his ear off first thing in the morning, trusts him to take care of him, and laughs at his jokes.

Weirdo!

Thanks for reading, friends. We appreciate you. If you ever feel so inclined, do drop a line and say Hi. We can still use all of the support we can get!

Interview with Dr. Alice Shaw

Excellent q+a with Dr. Alice Shaw--a legend in the lung cancer world.

This is a great summary of recent trends in ALK NSCLC.

 Read the transcript here or watch the video on YouTube!

Eight Months

I took this photo for Instagram, 34 weeks ago. The caption was “Quiet noon hour.” Four friends of mine ‘liked’ it.

It wasn’t the only photo I took that afternoon of myself. I was in the business of taking selfies back then. I took selfies or made Dan photograph me constantly to promote the clothing that I sold. Here, I was wearing a kimono that I wanted to feature, so I had been snapping different shots to feature it in the hazy overcast afternoon light coming through the window of Dan’s first hospital room.

He was in his bed, probably working on his phone. I was taking selfies and fidgeting. We had no idea what was going on. We thought he had pneumonia or major allergy problems. Or some kind of random infection that they would could prescribe an antibiotic for and send him home.

However I felt in my gut something was about to change. I snapped this photo, to just capture myself—not the clothing—for some reason that I couldn’t pinpoint other than a vague desire to have a “last” photo of me. I felt slightly over-dramatic and foolish. But after I took the photo and uploaded it, I started googling inspiring quotes about HOPE.

The first doctor to mention cancer came in that afternoon to speak with us.

So there is something to be said for intuition.

Tonight we had a quiet evening at home but when Dan headed to bed at 9, I wasn’t ready yet.

I turned on music and put on a new dress and a little makeup, and sat out on the front porch with a glass of whiskey. I wanted to enjoy myself but I felt alone and tired.

I walked back inside and sipped my drink. My phone had a text message light up.

“I love you.”

A tight ball of sadness in my chest rose into my throat and I swallowed hard. Waves of tension spread across my shoulders and up each side of my neck. Tears stung the corners of my eyes—and I know that is very cliché to write, but honestly, when tears sting at the corners of your eyes, there is just no other way to put it.

I texted Dan back that I loved him, too.

I refused to cry, so I let the stinging in my eyes subside and all of the tension simply swirled in my torso, trapped.

It is not daily but it is quite often–I periodically need to process it all again. The cancer changes everything. I am changed. I am a trembling rhythm of misplaced sorrow, anger, unknowing, and hope. It goes, and goes: await, unlock, release, revise, whisper, weep, rage, allow, and mend. There are days that I feel up for it; there are days that I don’t.

Eight months have passed since his diagnosis and he is still alive and the worst-case-scenarios are effectively being proven not ours to bear. But I did carry them, as possibilities, as potential seeds in my pockets–such tiny but heavy burdens–for days, weeks, and then months at a time. We just didn’t know for a while…

And then we did know. Treatments worked and genetic testing results shined a beam of light onto calendar days stretched out further ahead of us–next year, the following year. I eavesdropped chat group conversations online where patients who took ALK-inhibitors had no progression of disease for a substantial amount of time. Possibilities for Dan are lining up on the market and in clinical trials: crizotinib, ceritinib, alectinib, brigatinib, etrectinib, PF-06463922, TSR-011, CEP-37440, X-396.

Here is my deep, dark, awful secret that gives me grief: It’s not enough. It is not enough for me and what I want with my husband. I want so much more, so much beyond what these drugs could give us. Even the alternative treatments we are doing–I have no way to know what they promise. Have they worked? Possibly. Will they continue to? I don’t know. I still want more than I am being given. I have wept with greed.

What is saving me is the generosity of moments when I can still go to him, and receive comfort or just rest beside him. I use touch to help mitigate the pain. I liberally feel the new parts of him… Quiet pillows of thin skin below his eyes, puffy with fatigue and sinus inflammation. The uneven patches of hair I am memorizing: sparse and prickly across the top of his head, downy gray thickening quickly all over, and the dark brown stretch at the nape. The port nestled on the right side between his clavicle and shoulder–a hard, square knot like a calcified cyst–so tender after surgery but now accustomed to my resting brow. The hollow dip of his stomach when he rests, all the fat of his belly gone, with a sternum and ribs raised like canyon peaks, massaged by my curious fingers.

Can we keep going and find a way into chronic management of lung cancer? Can the drugs keep developing and give Dan an extended life with disease? I feel fortunate to even be asking these questions eight months after his diagnosis. And yet, I haven’t found my peace with it all. Does one ever?