To Live Like You Are Dying

Bear with me here. This is a very real post, but not as morbid as it sounds.

When I was diagnosed on May 11, my world came crashing down. Our family went into survival mode for months. There were ups and downs - mostly downs. As I struggled for air, balance, and for the reversal of alarming decline, I held onto hope. The doctors said I would respond quickly to the targeted meds (in my case, Tagrisso), but had we started soon enough? None of us knew.

Once I started feeling the positive changes, my energy was still minimal and I lived in a fog of morphine and exhaustion. I looked with anticipation to when I would feel better.

It came as a total surprise that when my energy and overall health started to pick up my heart and mind crashed. It was like I was diagnosed all over again. The doctor told me he had high hopes for several years of remission. But what I focused on was - what then? 

I talked to several trusted people and said, "I don't know how to live like I'm dying. It's a life skill I never learned." I really love that Tim McGraw song, but sky diving isn't my thing and I can tell you I wouldn't make it 2.7 seconds on a bull named Fu Man Chu. I knew what I wanted. I wanted to live a long life filled with my family and grandchildren and to feel like I was making a different in the lives of students. Those weren't things I could just check off a bucket list.

And so, I struggled. Hard. (So many of you have commented on how strong and brave I am, but I don't deserve those adjectives. I am neither. If I could sign up for an easier path, believe me, I would run to do so.) Yes, I absolutely believe God can perform a miracle. Yes, I trust Him to do what is best. I just don't know how to live in the face of my future. Several very wise people have encouraged me to dare to dream again. 

I'm coming to a few conclusions:

1. I'm not going to live like I'm dying. That's just depressing. It's silly, too, because we just don't know.

2. I'm going to revel in the beautiful moments with all of my people.

3. I'm going to focus on the opportunities to bless others- however feeble my capacities are. 

4. I'm going to keep fighting. Today that looks like exercising, keeping my mind busy with research and ideas for students. It looks like resting when I need to and eating my veggies. It looks like telling my people how much they mean to me. It even means delving into the medical bills - again. Sigh.

C.S. Lewis once spoke to the issue of how to live in the atomic age under the threat of nuclear warfare and I've taken his wisdom deep into my heart. 

"This is the first point to be made: and the first action to be taken is to pull ourselves together. If we are all going to be destroyed by an atomic bomb, let that bomb when it comes find us doing sensible and human things—praying, working, teaching, reading, listening to music, bathing the children, playing tennis, chatting to our friends over a pint and a game of darts—not huddled together like frightened sheep and thinking about bombs. They may break our bodies (a microbe can do that) but they need not dominate our minds.”

Thank you for allowing me to untangle my thoughts, pull myself together, and fight the urge to let cancer dominate my mind. There is so much more to life than dying.

                                                                                                                 -Nanette

P.S. I've recently found out how many of you are interceding for me - not just casually praying, but really interceding. Thank you from the bottom of my heart.

PPS. I have my next brain MRI tomorrow. Please pray for peace.

 Back From Colorado

I fully intended to update you from Colorado, but it was a pretty rough time for me. Two days into the program I got Covid and we had to be moved into quarantine for five days. The staff at the treatment program took excellent of us, but I still missed a number of treatments.I did have a light case and recovered well.

The treatments I received were juice fasting, hyperbaric chamber, fever bath, poultices and herbs. Between those and the Tagrisso, I was able to start walking and worked up to about 1 1/2 miles a day. This helped to lift my spirits. We plan to continue a number of the treatments here. The fever bath is effective, but miserable! I'm supposed to do at least three a week.

We flew home this last Sunday and I had a CAT scan on Monday. Praise the Lord, the scan showed significant shrinkage of all of my cancer. The doctor held out of hope of possibly years of remission. Happy dance! My breathing is almost totally free and my balance has improved greatly.

A few things to pray for:

    *My dad had open heart surgery on Monday. He needed a valve repair. Please pray for a speedy recovery.

    *Jalen left for university today. My mama heart is both sad and proud.

    *A few challenges in my sleeping and some side effects of treatment.

So it has been a very emotional week, but we have so much to give thanks for. Thank you for your prayers and support.

                                                                                                                    - Nanette

                      Forging Ahead

It's been a while since my last update. I went off steroids and it threw me for a loop - headaches, nausea, vomiting. Some of the symptoms lasted for a month. Not fun. With those symptoms fading, I'm able to notice the improvement brought by the targeted medication. I have a bit more energy and much easier breathing. What a blessing!

David and I are leaving in a couple of days to attend a cancer treatment program in Colorado. I'll try to post from there to give you an idea of what it is like. I have heard very good things about their program, so I look forward to experiencing it. In at interesting twist, this is a place I lived for 4 years when I was a child. It will be fun to show David where I lived. I haven't seen it since the day after I turned twelve. There will be good memories and I'll have to process some difficult ones, too.

I just want to take a moment to thank each and every one of you for your support. I am so spoiled! You each give in such caring ways and I am deeply moved. Some of you give of your time and skills - massages, nails, housecleaning, pulling weeds. Some of you send flowers and food and $. Some of you have sent comforting blankets and pillows, bath salts and skin cream. Some of you have made lunches for David and Jalen. Many of you text me often to let me know that you think of me, sending promises or funnies to make me laugh. I. Am. So. Grateful.

In about three weeks I'll have another full body scan to see how my lungs, liver, and bones are responding to treatment. I already know my lungs are responding well because I'm breathing easier and talking more.

                                                                                                                        -Nanette

 The Ups and Downs

(This picture was taken about 11 months ago when we hiked up a mountain to watch the raptors fly south along the mountain ridges.  These days, when I struggle to ambulate up one flight of stairs, I hold pictures like this dear. I can't wait to feel so alive again.)

The Ups: 

This week I had my first brain MRI since starting Tagrisso. I hadn't worried much about it, but about three days before my appointment I started to feel anxiety. What if there was no difference? We would have to start radiation. I started reaching out for prayers -not only for the BBBs (Bastard Brain Babies), but for my heart/mind -that I would not worry myself out of my Father's care. My dear friend, Nicole took me to my appointment and kept me talking and laughing. The doctor was late and that scared me. My coordinating nurse asked permission to sit in - and that worried me. 

When the doctor came in, he got right to the point, "So your scan...." I think I stopped breathing. "Surprises me...shows that the spots have shrunk...fewer of them." I didn't hear anything else. He was trying to show me the report on his computer, but I couldn't see. I just put my head on my arms and wept. "Go celebrate," he said.

The Downs:

The last two weeks I've struggled with headaches, nausea, and vomiting. We think it is withdrawals from going off steroids. Nothing tastes right. Not fun.

Things I've Learned:

* I hate steroid moon face.

* When you are wobbly on your feet it looks suspiciously like you are drunk. I need a crier to walk in front of me proclaiming. "Hear ye! Hear ye! She is neither drunk nor high. She merely wobbleth because of BBBs." It might have been helpful the other day when my feet involuntarily veered right and ran me straight into a trash can.

*This week fighting hard looks like eating a little even when you feel like retching at the sight of food.

*My village is so, so amazing. Thank you from the bottom of my heart for your support.

 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