Sunday, April 14, 2024


Tuscany, Italy 2022

I have updated our How to Help page for those of you who have been asking. 

Thank you everyone for your kindess and generosity!

Tuesday, March 26, 2024


The BEST NEWS is that Dan is home.

14 days in the hospital was a new record. Now he is adjusting to life at home with a fancy hospital bed situation, weekly occupational therapy, physical therapy, and nurse care, many medications to take, and a pretty sweet walker that is actually tall enough for him. He remains in pain but it is manageable with a whole lot of painkillers and (cross your fingers) a medical air mattress we are getting. I don't know what part of the BED SORE WOUND and PAIN FROM SPINAL TUMORS isn't clear enough in the notes for insurance, but I am confident it will get worked out because this is Dan. And the Universe loves Dan.



He has completed his 10 rounds of radiation! For that, he recieved Little Debbie's Easter cakes. He was so excited. He beamed at me and smelled the box. He was so brave. He told me he would mostly close his eyes, say to himself a mantra "You can do this. You are medicated. It's only 15 minutes. You can do this," over and over again. Despite all of the painkillers, he still needs an additional special opiate dose right before the procedure so that he can lay flat on his back. This was a delicate situation with timing and sometimes it didn't work out very well. Instead of rescheduling, Dan laid down and stayed still, clenching his body, grunting, crying, and at times yelling out. I can't express to you how much he just wanted to get it done. So he got it done. It is my hope of all hopes that the radiation works and his literal sweat and tears will be worth the sweetest, lightest ease of pain in the coming weeks.    


The HARD NEWS is that a PET scan revealed he has additional cancer spreading in his body.

Sparks of cyan, red, blue, magenta, yellow, neon green. 
In a body of black.

I really didn't expect everything to light up again. It was all my mind could do to process the results of the three separate MRIs (abdomen, lumbar, and thoracic): cancer active again in and around the spine. It was the moment that we knew would occur in the future of our cancer journey--like a switch getting flipped--I just expected it to be gradual. However all of the cancer showed up as an aggressive spread of color. The results were confusing to me at first. How did they know what was necrotic tissue and what was active cancer? How could they tell the difference? It is the presence of those colors--showing the high metabolic rate of activity. 

  1. 1.
    the condition in which things are happening or being done.

So it is happening--this sort of very diligent production--in his left lung, scattered lymph nodes, and bones like the ribs and pelvis. They took a biopsy from a tumor in a lymph node in his neck, and it had necrotic tissue in the center. The new cancer had grown around the old. If all of this has grown, what about those quieted lesions in that soft, nervous tissue of his brain? I have scanxiety for his MRI next week. I have biopsy-xiety, if that could be a thing, too, for results that will tell us the genomic driver of the cancer. 

[NERDY THINGS: That will tell us if the situation is that the Alsenca (chemo-in-a-pill) is no longer working for his ALK cancer or the cancer mutated. If it is still the ALK gene, we have another medication like Alcensa to try and then some. These "nibs" as we call them, have lined up in the treatment world since Dan was first diagnosed: Loratinib, or Crizotinib, or if it fails, Ceritinib. If it fails, Entrectinib. And so on. In a chat group I found another peson on Brigatinib. Many people are in clinical trials using future nibs. If his cancer mutated, we will need to target therapy toward a new gene. Some known genes for lung cancer are ROS1, BRAF, KRAS, EGFR, MET, for example. Each of these may or may not have targeted medicines on the market or in clinical trials.]



Help moving furniture to get Dan's bed set up. Jim and Char visiting. Surprise candy on my desk at work. An elementary school friend giving me flowers in the parking lot at Kroger. Stormy happy to have his person home. Home cooked meals! A surprise visit from Doug. Help with chores and errands. Surprise boxes of goodness in the mail--everything from fancy beard soap to a bunch of candy that Raine devours. Sipping wine from Oregon. Amy, who also surprised us visiting from SC. Kind and generous donations.

Every single one of all of your Messages. Comments. Shares. Emails. Letters. Cards. Texts. 

All the good vibes in the Universe. We feel it. We feel it most when we hug each other and Raine. It's all the same!

Sunday, March 24, 2024



Remember Raine's Fox? This time he shared penguins.

Dan's Thoughts - Posted to Facebook 3/23/24

2 Weeks……or 10 Years?
I took a similar picture almost a decade ago. Different stuffed animals, from a different state, but in the same spot on the bed as these. I spent two weeks with my penguins after a 10 year pause…..
We knew it would come back some day. My body was young, strong, and healthy when I was first diagnosed. Healthy enough to chase around a toddler around the rough streets of Carlton, OR. The outpouring of help from our family, friends, coworkers, and city jumping out to help this young g family hit with the worse news imaginable (Stage 4).
We hit it hard. Radiation and Cisplatin (the nasty of nasty chemo). Slowed it down. Moved to a weaker therapy, and then eventually were lucky enough to run across an ALK mutation that gave me an opening to a targeted therapy that had brought me almost 8 years currently.
When we attacked the cancer hard in Oregon, we knew it would be rough on the body long term. 10 years of MRI’s, CT’s, Gamma Knife Radiation, Chemotherapy options, Shoulder and Hip Replacements, Hearing Loss, Vertigo, Neuropathy, etc. Always hinting and celebrating little things like a clean scan (Scanxiety). I was able to enjoy an almost normal life of hiking, fishing, golfing, rocking out at concerts, playing ball with Raine, enjoying food, beer, cocktails of all sorts!
Size of a walnut.
Under my rib.
I thought I seperated a rib after a coughing fit at Christmas. I’ll get it checked out.
Muscle Relaxers for 2 weeks. No real help other than making me constipated! I tried taking care of it over the counter, to no avail.
Into the hospital (3 ER and 2 Hospitalization). Suck 3 weeks of bowel stuff out of the body. Colonoscopy (needed one anyways - check!!). Finding……you have 2 ulcers that are causing the pain from inflammation.
Go home!!! No!!! 2 days later back with…..
Pressure from my wife, GP, and Oncologists……..MRI his back! This is not GI/Colon.
PET Scan……
Active Cancer……
Time slows…..
That is what we are doing now.
Pain management.
Genetic testing.
Like starting again like 10 years ago. Except Raine is now pretty much looking his mom in the eyes!!!
Brightside is once again our family, friends, coworkers, near and far, are lending their time, talents, thoughts, prayers, positive vibes, delicious food, and smiling faces to help is in this time of uncertainty and difficulties. The amount of people to thank is mind blowing!
My wife has been nothing short of amazing. She has been my advocate. She has been stronger than I have ever seen her. Taking care of Raine, Don, Stormy, and me! It exhausts her, but she keeps going.
She also is a way better writer than I am, so I leave postings and updates to her 😊
Help will still be needed but life needs to continue. Day by day move forward. Be positive. Smile. Walk Outside. Listen to some tunes. Spring is Springing!
Let’s do 10 Years………

Wednesday, March 13, 2024


After a week here, we have an answer to the case of the unrelenting pain Dan has had. It is the once dormant cancer of his spine—industrious cells once again growing, crowding inside the dense bone and stretching, spreading out into the soft tissues surrounding it.

When it IS cancer, it is like we are being lifted from the ground, detached from any root system, left to the whim of the wind like a tumbleweed. Everything begins moving quickly, rolling, flipping, and I feel numb like the dried, brown ball of sticks and leaves. 

As soon as we heard the results of his thoracic and lumbar spine MRIs, I felt that lift—buoyed, outside of my body, disassociated—while I listened intently and still asked questions, trying to understand this rapid change in what had only been 10 weeks. And after the conversation, after Dan and I sat together in silence with occasional thoughts or jokes, after informing some friends and family, the numbing feeling also sank in. 

I walked out into the sun toward the parking garage, gripping my keys as if they were a fiercely solid weight that could hold me down to the ground. I sat inside the hot interior of my car and tested my broken A/C while talking to a friend on the phone. What I remember now was how I carefully focused my breathing as evenly as I could as I talked, letting my throat stay soft and my voice steady. I was going to drive to work and make sure I could have the rest of the week off and then drive home to pick up Raine and bring him back to the hospital to see Dan. I told her we were going to simply explain that the doctors determined the pain was from the cancer in his back and he would need radiation and medicine for it to start to feel better. We don’t know anything more than that for now, so I have to avoid getting ahead of myself.

A tumbleweed’s dead tissue is functional—it is necessary for the plant to degrade gradually and fall apart so its seeds can drop about, deposit themselves, perhaps into a moment of promise that is moisture.

So here is our little family, with Dan getting whisked into more scans, biopsies, radiation treatments and infusions, as we move with him. There will be appointments and a lot of driving back and forth and questions and trying to find answers and changes to how we do things and then changes to how we do things again and what will and won’t be possible at times as we adjust, tumbling along together on a new undetermined path. 

As we roll on, we will be dropping seeds. Hoping our hopes. Thank you to our community near and far …. Please share patches of water. :)

Peace be with you,

Sunday, February 11, 2024



blurry herzings

There is nothing better than leaving the hospital and going back home. It has been 6 days for Dan and he is happy to be back to Stormy and us, showers, comfy clothes, and the freedom to walk outside in the fresh air!

Unfortunately, things are still difficult. He has to follow a strict low-residue diet, he is still in tremendous pain, and he has yet to pass gas--but at least is managing some watery bowel movements.

I find the low-residue diet extremely challenging but Dan seems to be adapting fine. It is very counter-intuitive to what I believe is healthy eating. He can't have salad or greens, citrus or seeded fruit, whole wheat or grains, nuts or seeds, whole or raw vegetables, and any spices or seasoning. It is focused on no fiber and nothing that requires the gut to work hard at digesting or that creates flatulence. I really wish I hadn't gotten rid of our juicer because I could be giving him some greens and other veggies/fruits as juice, or how awesome would it be to be rich and just go to the local juice and broth bars for him!

He is allowed mashed potatos, any type of bread, pasta, or cracker that is made of refined flour, sweets made with refined flour, most fats and oils, tender meat, eggs, and low-fat dairy. So he is getting by with yogurt, apple juice, broth, fish and chicken, protein shakes, and refined flour stuff. At the same time, he has a long list of medications and needs to take magnesium citrate, miralax, and senna to counteract the food and painkillers that can make him constipated.

That's an entire page of medications.

Speaking of painkillers, he has been on oxy, a fentanyl patch, tylenol, and cbd/thc tablets. Even with all of that, he is in too much pain to lay down, sit comfortably, and sleep for any healing length of time. He feels better when walking or standing although that doesn't last very long either. He constantly keeps heat on the area but he is beginning to wonder if it really makes a difference? We really need help managing his pain! That is the most challenging. What do you do for an ulcer in your colon!?!

As for passing gas and bowel movements, it is supposedly just going to take time. We have no idea how long. We are just hoping that things will not get backed up again!!! We are hoping sincerely there will be no return to the hospital. 

So that's the update. 

Thank you to everyone who keeps us in your thoughts, checks in with us, helps in awesome ways. I don't know how we would do it without our village!

Sunday, February 4, 2024


Having Dan in the hospital triggers my memories and anxiety from his longest hospital stay—when he was diagnosed with stage 4 lung cancer. It has been 9 years but even today I still experience a sense of ptsd with the sights and sounds; times of indecision about where to be (with Dan, Raine, at work, home, etc.) moments waiting for answers; and the roller coaster that is the revolving door of doctors and nurses with different opinions and strategies. This time there is a problem with his colon.

First, let me share that biopsies came back negative for cancer. During a colonoscopy they also determined there were no lesions or masses (tumors). There was a concern about the inability of the camera to reach his traverse colon to check for something there, but after six days here he is now passing loose, watery stool and they consider that a success and decided not to do a PET. What we know for sure is that Alectinib is still working for him.

When it isn't cancer, I feel adrift in the pool of my ptsd. I mentally amped myself up and had pre-conversations in my head about it being cancer. I obsessed over whether or not it would have been his cancer metasticizing to the colon or a brand-spankin' new secondary cancer? What would the universe deliver to us as another lightning strike? I hovered over chat boxes in ALK lung cancer groups waiting to ask opinions and feedback. I cried during my drives to the hospital and back. Sometimes I googled things I shouldn't. 

Afterward, I feel foolish. It feels unfair to go through it all but that is what we do. We endure and we move on. In the process, we get to feel the deep love of ourselves for each other and the generous support of those who care about us. 

This all began when he was constipated for three weeks. We did everything possible to alleviate the pain and get his bowels moving. I gave him 4 enemas in 24 hours at one point! Finally the pain was so intense, he went to the ER. He was home the next day only to return again and be admitted for severe constipation. The past week he suffered having a nasogastric tube down his nose and throat to suction fluid and gas from his distended stomach. There was even poop getting backed up into his stomach and emptying into a big bucket behind his bed. He couldn't have food--just sips of water with pills. He was eating ice chips until he vomited and then he couldn't even do that. 

We saw some progress overnight Thursday to Friday with him finally passing gas (imagine not being able to fart for a week!) Then his tube came out and they let him have broth. The pain remains and he has tried different painkillers with neccessary accompanying laxatives. After 2 gallons of laxative last night, he has had 6 bouts of loose and watery stool. They introduced soft foods today.

He has enjoyed Raine's visits, that first taste of broth, laughing with me and Char, and taking walks. I enjoyed a 45 minute massage yesterday when I took some time for self-care and my habit of picking up cold pressed juice, coffee, and avocado toast at a cafe nearby every day. Other than that, it has been really tough. I took a shower today after a week and it made me feel a little less strung out.

Like I said, what we do know at this point is that it is not cancer. We have narrowed the list to at least 2 ulcers and what they said in a scan appears to be consistent with adynamic ileus, which is like a loss of movement in the intestine. Of course, this is what I think right now. I don't know what tomorrow holds. The doctors could tell me something different because that has been happening. And we still don't know what caused this, but talk of discharge is happening. I'll keep you posted.

Thank you for the Doordash gift cards, Instacart deliveries, thoughts, prayers, positive vibes, help with Raine and my dad, and all the support that comforts us!

Friday, January 12, 2024

Snow Day Confessions


Most days off lately I have just sat around in my pajamas feeling sorry for myself and bored. So, today I went out. As in, I actually showered, dressed, packed up my laptop and a book, and drove to the coffeeshop, alone. It's a snow day so I wore my favorite wool socks, some crisp new gray pants, the softest black tee I own, and a different shade of gray scarf--wrapped around my neck now... loosely because it can hurt with my fibromyalgia. I'm listening to Jason Isbell's recent album, Weathervane, suggested by Corey. Only 5 weeks and then I'll be there visiting him, Suzy, and the doggo-kids in Charlottte. I'm also going to make it out to Morganton and spend a little time with Sarah and Ryan. North Carolina is beautiful and I'm excited to experience it in "winter." No other travel plans until the summer when we go back to Europe. I am practicing today with my chocolate croissant and coffee. My laptop is actually super gross and dusty which seems appropriate because I think the last time I ventured out to write was with Molly last winter. The fact that I used to do this regularly and intensely, for school for two years, seems lost on me now. I am out of practice and my writing/reading/scholarly/creative muscles are atrophied. So you get this rambling, long, single paragraph, stream-of-consciousness. Why don't I write on the blog like I used to? I wrote so much when we lived in Oregon. I go back to it often and witness again the difficult and also beautiful times. With Dan doing well in his targeted treatment regime, I have told myself that no one wants to read about anything else--and certainly not about me. What about me matters? I tell people that I write to advocate against stigmas in illness, but I don't. I only update on Dan, and I don't even write very much about the stigma we encounter with his cancer being lung cancer. I don't participate in fundraisers or awareness campaigns either, even in November which is Lung Cancer Awareness month. Honestly it sounds exhausting. I'd rather avoid confrontation and stay in my pajamas and eat croissants. Or drink. By now, I have drank enough alcohol for a lifetime and I am only 43. It increased significantly --became daily--after my mom died. The crack in my mind and the crater in my heart--it was and still is just too much. I don't want to feel it so I try to distract and numb myself. Having bipolar disorder, on medications, and drinking daily is quite a choice. It's not the move but I do it anyway. Change is hard if you don't want to change. If I keep writing my way into confessions like this maybe I will begin to want to. I have never known moderation in any aspect of myself and certainly my unhealthy habits. But I suppose that is part of bipolar disorder. I also think my boundaries are fuzzy. I over share if I feel comfortable with you. I am easily codependent with many people in my life. I can see how my symptoms overlap with borderline personality disorder, which is hard to admit because I worked with borderline patients in Chicago and I thought they were terrible people. It's hard to seperate that disorder from the person. I suppose that could be said about any disease. Who is Dan apart from his cancer? How does he maintain his self-identity or how did he encompass cancer into his identity without getting lost? I think about these things often, especially for other friends and people I know who have cancer. Some of them I actually only know because of their cancer. I would say that Dan is grounded as himself, and actually rarely thinks about his cancer. In September it will have been 10 years since his diagnosis. At that time, we learned that the cancer had sort of began about 9 months prior and grew, spreading throughout the year. It felt so fast but I now know that is not as quick as some people experience. It can even be just a few weeks. So in a way, as it is January of 2024, Dan has been living with cancer for 10 years now. I have been living with his cancer too. And that is another reason that I self-medicate. It's not just drinking. I push boundaries, as I said, and I spend too much. I make a joke of it but it really is not the move. It is hard to save money when it burns a hole in your pocket. And it is stressful when life is precarious like that. Kristi told me a way to think of stress is “Stress is: I am feeling this and I don’t want to feel this.” She said sometimes just acknowledging it as a feeling helps her calm down. What do you do to calm yourself? I soothe myself with a blanket, just like I did as a child. My mother never expected I would carry the habit into adulthood. However she never made me feel ashamed or funny about it. She just laughed and shrugged her shoulders. I've moved onto an almond croissant and a chai latte. Sigor Ros. Time to read a little of my book--"1000 Words; A Writer's Guide to Staying Creative, Focused, and Productive All Year Round" by Jami Attenberg. She started the #1000wordsofsummer movement if you remember. I like this because it is full of thoughts from authors. I'm especially curious what is shared by Ada Lemon, Elissa Washuta, Alexander Chee, and Roxane Gay. I also want to do some research for contests and submissions I can do for my tiny book, "Blankets," which was my thesis. After that, I think it is a perfect winter day to take roses to the cemetary. How do you spend your snow days? 

If I decided to post this, and you have read this far, thank you for being my witness in life. And consider supporting Palestine and a permanent cease fire. Many small voices can make great change. 

Peace be with you.