Sunday, February 11, 2024

HOME FROM THE HOSPITAL

 


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

when it isn't cancer


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.

Saturday, January 6, 2024

2024



Pink


Current Reads



From Zac. So applicable.


Join me in the New Year with Nikki McClure.

Thursday, September 7, 2023

19th Wedding Anniversary & Scan Results

 

For starters, we celebrated our 19 year wedding anniversary!

(Photo above - we spent a night away in Michigan City, Indiana, a weekend before our anniversary where we saw one of my favorite comedians and enjoyed pickle-backs and a giant, buttery, salted pretzel at the oldest bar in town.)

This time we didn't get each other the same greeting card, but we definitely picked good ones. His read, "The fact that I wait to watch our shows together shows the highest testament of my love for you." And mine was "Let's grow old and hold hands forever until I need to use my phone." Ha! They are both so true. 

As for watching shows together, we have most recently seen SiloPlatonic, and Hijacked on Apple TV and finished the last season of Peaky Blinders on Netflix. So good. Silo is based on the book Wool, so I will be checking that out soon! Books, by the way... We are reading ... (Dan) back-to-back Andy Weir--Project Hail Mary and Artemis. I am loving Butter Honey Pig Bread, while also dabbling in poetry and nonfiction (War Is Not My Mother and The Problem with Everything: My Journey Through the new Culture Wars) and sideglancing a huge pile of to-reads about crystals, chakras, home decor, and health/wellness. Ha! 

Anyway, other mundane information is our hobbies of fishing, golfing, and walking for Dan, and retail therapy for me. (Truly. I am working on getting a better hobby...Word on the street is that I might start walking or yoga? I do have a new tattoo of a bee standing on a flower in Warrior I pose.) Stormy keeps us laughing and Raine is a joy, Grandpa Don is doing well, so our little house is cozy and nice. Plans to travel again are in the works...

Our actual anniversary weekend we spent time together as a family camping, also with Jim, Char, Doug, Rita, and the kids. Boating, sitting by the campfire, and celebrating one final stay in Jim and Char's camper. They have been camping together for 50 years and will now pass on the keys to another family. Next time we go to Apple Canyon, we will be celebrating at Doug and Rita's new lake house. 

On our actual anniversary--the 4th--we slept in and then Dan made pancakes and mimosas. We exchanged gifts. We enjoyed tacos and margaritas for lunch at Blue Margarita with Raine. We were happy. And still very much in love with each other.



As for scan results, Dan's CT came back stable. Again! And all bloodwork was good.

We did celebratory pickle-backs. (This is the thing we do, you know? For celebrating--Except when we have them because I get a writing publication rejection. That is just to soften the blow.) 

Feel free to celebrate with us in your own way.... Cheers to some good things!!!!


Sunday, June 11, 2023

8 years, 8 months

"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?" - Eight Months 5.18.15


I wasn't prepared for the changes that came. Major life changes. Changes that were connected to Dan's disease or perhaps just circling on the periphery. Moving. Dan having multiple surgeries. His disability income with no hope of earning more than he does, ever again. I wasn't prepared but I have tried to accept it all. 

Changes that were unrelated came with brutal force. My mother died. I spent this Mother's Day at the cemetary for the seventh time. I watched my father drift into some sort of point on the Lewy Body Dementia spectrum. Rachel and I became surrogate mothers to him-helping with his medical care, finances, medications, and sometimes personal care.

If you had spoken to me eight years ago I would have anticipated Dan being taken care of such as this, or worse. At one point I believed finding my mother lifeless or showering my father were preparing me for those moments with Dan. This is just where my mind ends up. Isn't every experience preparing you for the next? However nothing has surprised me more than being here right next to him, so many years later, in our same side by side spots in a nest of sheets, fingers intertwined as we fall asleep. And I am living life as if he doesn't have cancer. My only reminders are his CTs and MRIs every few months. And they continue to show everything unchanged. So I feel peaceful about his cancer. Most of the time.



I am just following his lead of focusing on positive things--including making future plans.

The unbelievable...Sweden celebrating Midsummer Day. I'll bring a white sundress and wear a crown of flowers. We'll move onto Amsterdam with crowded streets of bicycles and canals, flower festivals, and poignant places to visit. Make Raine's dream come true and visit Paris. Let him sweat and consider going back down as he climbs those stairs, but then finally reach the elevator that takes him to the top of the tower.

And the ordinary: Let's have lunch together tomorrow; a new restaurant. Savoring al pastor or tacos de lengua, guacomole with the right amount of lime, a cuban cocktail with tequila and squirt with a splash of coke. A tall glass of smooth horchata with cinnamon.

Let's spend the evening on the patio and play with our beautiful son. Our crazy dog.

I am hopeful for another year, and then maybe another 8 years. To sit down and write another blog post like this. Wouldn't that be amazing.

Thursday, June 1, 2023

So, Paris Happened

I celebrated my birthday last October with a last minute trip to Paris with Amy. A few pictures here sum up a little bit of the weekend--

The view from our dinner cruise boat on the Siene.


Just like Italy, gelato was had numerous times for no reason other than Gelato.

The same can be said for macaroons!



Two of my all-time favorites that I found at the Musée d'Orsay --- Petite danseuse de quatorze ans by Edgar Degas and Le Lit by Henri de Toulouse-Lautrec... Along with hundreds of amazing impressionist and post-impressionist works.



We went to a show at the Moulin Rouge and dined outside afterward at a cafe until midnight. 
We make each other laugh so hard that I cry.




Cheers to the tower and all of the other parks where we sat and ate baguette, drank champagne or wine, and people watched, took photos, read, and talked. 
It is true that it is the city of love. There were people making out everywhere.


Until next summer, Paris. Raine can't wait to meet you!