A Long Journey, Fraught with Dangers, Toils, and Snares and Blessed with Loyal Companions

This spring, before my diagnosis, I had the urge to reread The Hobbit and The Lord of the Rings Trilogy. In a marathon, I listened to all four books and am I ever grateful that I did. I have long been comforted and challenged by the themes in this work. The battle between good and evil. Hobbits who never looked for a calling being thrust into vital roles with impossible odds. Terrifying dangers. Long, exhausting ordeals. Glorious retreats for refreshment. Second breakfasts.

I was freshly finished with the series when my diagnosis came. and I have once more gathered great strength from the story. My journey doesn't include saving Middle Earth, but it does include the rest of the themes. In. So. Many. Ways.

       "It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness, and danger, they were. And sometimes you didn't want to know the end, because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this Shadow. Even Darkness must pass. A new day will come. And when the sun shines, it'll shine out the clearer. Those were the stories that stayed with you. That meant something. Even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back only they didn't. They kept going. Because they were holding on to something. 

Frodo: What are we holding on to, Sam?

Sam: That there's some Good in this world, Mr. Frodo...and it's worth fighting for."

                                                                                            - J.R.R, Tolkien

                                                                                            - The Two Towers

And so I fight. 

I'm on day 19 of the Tagrisso and I have seen improvement in my energy levels. I still struggle with dizziness and black outs and being wobbly on my feet. I feel like that hilarious reel that says, "I want to be a marshmallow. If I were a marshmallow, I would just wobble around....with joy." So if you see me around town (you probably won't) and I appear unsteady, I'm just practicing wobbling around with joy.

                                                                                               -Nanette

We Interrupt Our Regular Broadcasting...

I just wanted to take a break from our latest theme and let you know some really good news that has happened in our family. Mr. Blueberry Eyes and his beloved Abbi became engaged a couple of weeks ago. We are so very happy. These two are so suited to each other. 

I

It will be a while before the wedding as they want to finish college and attend universities across the country from each other, but they wanted to make it official.

Abbi and Mr. Blueberry Eyes have been friends since childhood, but didn't really "notice" each other until a couple of years ago.  In an interesting twist, Abbi is Ben's (Laughing Water's husband) sister. 

 

Finding Our Stride 

I've been on the targeted meds for seven days now. I have not had any negative side effects - so thankful! I'm struggling to find my stride because it seems I have plenty of other symptoms to navigate and they change a bit from day to day. The most frustrating is that I'm not tracking as well as I usually do and have made some mistakes in business and medication that leave me feeling rattled and unsure. Is it stress, or are the Brain Bastard Babies making inroads? I'm also a bit wobbly in my balance and have decided that I should probably not go to town on my own until the meds start shrinking things. I despise losing any independence.

Just to be raw and honest for a minute, when I found out it was in my brain, I faced a powerful fear of losing cognition. I treasure words, ideas, thoughts, deep conversations above many things and the thought that I might be robbed of these things was terrible. I have so much I still want to do with my brain. I've decided to focus on healing for now.... and leave the path of it to the Almighty. A friend encouraged me to write even if I'm afraid it won't make sense.

Here are some beautiful things that are making me laugh and smile....

* This handsome dude and I are celebrating 26 years of marriage today. We celebrated with dinner out and relaxed enough to talk about some of our deep, philosophical ideas. It felt good to be "us" again for a few moments.

*It is strawberry season and we picked a boatload the other night. When I found any berries past their prime, I would toss them into the chicken run and watch the mayhem that would ensue. If you have never seen a chicken grab a strawberry and run pell mell to get away from the other hens, you really should. I'm pretty sure the amusement of it can cure cancer.

*Friends weeding my garden. 

*Mr. Blueberry Eyes and my son-in-law (I need to give him a blog name) laid weed cloth in my garden so I can finish planting. (Yes, I'm woefully late.)

*I am so deeply moved and humbled by the overwhelming generosity of people who have contributed to the GoFundMe account set up in my name. Thank you from the bottom of my heart. Pleases know it is very important to me to put the money exactly where it is intended - medical bills and expenses not covered by lost wages. There will be no extravagant spending. 

                                                                                                          - Nanette

 Introducing Shithead

It's pronounced SHI-THEED. Get your mind out of the gutter. We name everything in this house. Queen Bees. Vehicles. Everything. Even tumors. 

So Shithead has given birth to 41 BBBs. (Bastard Brain Babies), Four LLLs (Lily Liver Lesions) and....I don't know how many bone spots (name suggestions?).

The amazing news is that I was approved for FREE targeted meds from the drug company. I was approved almost immediately and they are shipping the meds as we speak. I'm assured my EGFR on area 19 (I love saying that) will respond very quickly, including all of its named and unnamed entities.

So here are some things I've learned....

*Having cancer makes you feel entitled. Want a whole package of organic blueberries for a snack? Go for it. Want an entire pint of plant based, sugar-free ice cream? Eat the whole thing. That one is not, however, free of consequences.

*Cancer is a fulltime job...as my friend Karen said.

* You will have more conversations with strange men about what kind of bra you have than you ever thought possible. (For the diagnostic machines.)

*You should probably NOT tell the guy at ATT your latest life story. Somewhere there's a poor phone sales rep looking for a good counselor.

*Get you some people like mine. I have the BEST people. They are knocking the support crew thing right out of the park (a post all of its own).

*Sometimes people are weird. 

*People handle grief very differently. Some weep openly with you. Some won't contact you until they can do it with a stiff upper lip. Some sit with you. Some go into a flurry of activity.  I need them all. BE YOU.

Pretty sure this list is going to grow.

                                                                                -Nanette

 Short Update

This will be a short update. I feel like I seared everyone with the post about my initial diagnosis. I have one more bummer to share and then I promise the next will be more fun. 

The brain MRI I had to "rule out" brain mets actually showed that I have many spots on both sides of my brain. That was a bad morning - especially because I made the mistake of checking my patient portal at 4 in the morning and discovered the news. Not much sleep was had after that. The oncology center, however, fast tracked me through more diagnostics and outfitted me with a CT mask and I start radiation this week.

I also have very, very good news. My primary cancer testing came back from Mayo clinic and shows the genetic mutation EGFR on area 19. This means it is a specific cancer mutation that is responding very well to the newish targeted therapy drugs. It is giving people YEARS of quality life and there are new generations about to come out of testing. My doctor was thrilled, so of course, that gives me so much hope. Apparently, this particular drug also crosses the blood/brain barrier better than some, so the brain will be hit from two angles.

Some specific prayers:

* Financial grants through the drug company will clear quickly so I can start the targeted therapy soon.

* Praise that I don't have to have full-brain radiation and that the targeted radiation will be thorough with minimal side effects.

* Thanksgiving that Friday's terrible, horrible, no-good day in ER appears to have been the result of a stomach bug and NOT the cancer.

* Prayers that my breathing will be easier with a meds change until the therapy starts.

                                                                                - Nanette

                                                              Utter Shock

 My head is fuzzy. Her voice sounds so far away, this lovely young doctor. My eyes wander to the blood drying on the hospital sheet.  It’s just a spatter from the IV, but I focus on it.  It seems the only tangible thing I can see.  Somehow I sense the gentle pressure of my friend’s hand on mine and I wonder if I’m squeezing hers too hard. My eyes can’t focus for the spots all  around them.  I try to see my husband, frozen in shock, unable to rise from his chair.

“I’m afraid I have bad news.” Bad? I’d cancelled my last two students because I was coughing and wheezing and wanted to go to urgent care. But now I’m in ER. Five minutes ago, I’d thought it was all just an overreaction and I was laughing and talking with the nurses. “You have a mass in your lung…metastasis…spots…liver….bones…cancer.”

“But I’ve never smoked.” Oh, God! Liver? Bones? Doesn’t that mean death? I hear myself say, "Well, I’m mean. I’m not afraid to die, but… but…I want to be around for grandbabies." What about my calling to help children read?  I was just starting to roll on a big, big expansion for children. My master’s program. I was going to write. Travel. Static closes in and expands out and then in again. Funny how fast your brain processes...and how slow.

I tell the doctor I’m trying to focus on what she is saying, but I can’t. Can she please write it down? David and I have so many dreams. We’d just said to each other - wasn’t it just last week - that we would have to die on the same day because we couldn’t face a life without the other. The memory mocks.

I hear a soft voice. Far away.  Is it mine? I’m acknowledging the doctor, but what am I saying? I think I’m saying, “Oh.”

I finally hear my beloved, “Are you sure? Couldn’t it be something else? What causes lung cancer in people  who don’t smoke?” 

“Bad luck.”

It all blurs. He is standing by me now. I think I’m looking at him. “Are you okay?”

“No,” he says. No. We are not okay.

I’m so cold. I hear my friend (wildly, the hospital chaplain on duty- another story for another time) say, “She is in shock. Can we get her a warm blanket?” The nurse is so sweet and I feel bad that I can’t acknowledge her. I focus on the blood again.  It’s concrete.  I’m waiting for the wake-up  part of this nightmare.  It will be such a relief.

David helps me to the bathroom and I think I’m swaying.  I cling to his neck.  “You didn’t sign up for this.” We’ve worked so hard and now I’m going to die before we can enjoy it all…what exactly?

Somehow we walk out. I take in the breathtaking beauty of the May evening, the Montana mountains lighting up in the sunset. We cling to each other. 

We zoom with the kids. I try my best to smile and assure them I’ll fight like hell.  But how do you fight death, exactly? They sob and I feel horrible. They are both finishing up heavy assignments at school two states away. I can’t hug them. Jalen vomits and I can’t hold him. I’m utterly  powerless. 

The night is filled with sobs. First one, then the other. Rotating. Promises in the night. I'll never remarry.” 

“Please don’t say that!”

“Oh, God! My family!”

 A New Twist

To state the obvious, I've been silent on this blog for a long time. Life has been full and rich and I've been otherwise occupied.  Laughing Water and Mr. Blueberry Eyes are all grown up. The Wood Artist and I have been full-tilt career. There will be more time to fill you in later, but the point is that  I'm back blogging, old fashioned as that may seem.

Life tilted and whirled and went into retrograde motion 7 weeks ago.. I stayed quiet on social media for a month  and then decided to talk. I have metastatic lung cancer. Apparently, the cancer knows I love to travel because it flew to my lung lymph nodes, liver, c-spine, hip, and brain, energetic little fellow that he is. He decided to stay incognito until he could declare that he was stage four. Tadaa!

My village wants to keep informed and I don't really want to bleed all over Facebook, so I've decided to keep you all updated on this blog. I'll post the links to Facebook when I do so you know there is something new. Or you can subscribe here. 

I'll tell you how its going - the good, the bad, the funny. I don 't promise to not have a potty mouth. I've already learned  that stage four cancer changes things. But I will also hold true to who I am. Open. Honest. Asking. Full of faith. Peaceful. It will be raw. I will bleed emotion. I will make you laugh. I have no interest in being fake and I have every intention being real. If you can handle that, I really want you on my journey.

- Nanette