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!

Medical Update || Spring 2017

Hospital care, having Raine's bag and car seat ready to go for a sitter, dinner arriving in a box

The prelude to winter began with Dan’s hospitalization November 1st. I spent the day wrestling with my intuition that I needed a significant break–things were getting to be too much and I felt super fragile. I talked to the HR manager at work and decided to take a leave of absence for the month of November. I came home and told Dan, only to discover he was developing a fever. I needed to take him to the ER so my abrupt decision suddenly seemed genius. Honestly, I felt like I really couldn’t put a price on the relief I felt to not have to call in and get a shift covered for the next day at 7:00 a.m.

Millenium Park "Bean" photo by Dan

 Dan spent 8 months since April 2016 struggling with recurring episodes of cellulitis in his right leg every month. It wouldn’t have been so scary if it didn’t have the possibility of a deep layer infection (flesh-eating strep for example) or  overall damage to the lymphatic drainage system due to the chronic nature–especially because he has a slightly compromised immune system and he seemed resistant to certain antibiotics. So obviously it didn’t take much for me to get him to the ER at the very first sign of the infection. For crying out loud.

As fragile as I felt that day, you would never know it. I immediately go into autopilot when needed. I examined the leg, called the doctor, packed a hospital bag, woke up Raine and took him to Rachel, drove Dan to the ER, and helped communicate his symptoms, needs, history, and meds to the nurses. Then I stocked up on snacks and drinks that Dan likes and turned on Neflix on the laptop so he could watch something while we waited. I left just before they admitted him at 2 a.m. and returned home to sleep before picking up Raine and taking him to school in the morning. After that, I loaded up on caffeine and packed Raine’s babysitter bag, fed the pets, and returned to the hospital.

I’m not going to lie. I am still traumatized by the first few days of his symptoms, admission and transfer to the hospitals, and the devastating diagnosis we were given. I have a little nip of PTSD, and when I need to go to the hospital, or Dan makes a strange noise from another room in the house, or really, anything seems odd–I am on high alert. I think most of you who have experienced these sort of medical traumas or any other trauma due to death, military duty, natural disaster, or abuse can empathize. Our bodies sense that trigger and we can’t always predict how we will react. It all happens in our bodies so fast. So far, I get super competent and organized. (And then there is a disastrous aftermath where I eat too many cupcakes, cry for days and can’t leave my bed, or drink myself into an oblivion). Or my body releases adrenaline and I mentally have no idea what to do with it. There might be twitching, raging, or crying. Who knows?

Good times in Chicago with brother Doug and bestie Art

NOT TO BE SUCH A DEBBIE DOWNER.

Dan has had a pretty enjoyable winter. The cellulitis hasn’t returned for the past 3 months. He packs in a lot of fun into his schedule when he isn’t down and out after chemo rounds. He is taking full advantage of seeing friends who fly into Chicago, his brother and family, and friends here in central Illinois. Not to mention me and Raine–He gets a dose of us everyday and usually the pros outweigh the cons. Ha!

Also, every three months Dan has scans to monitor previous tumors and potential new ones–it initiates major scanxiety and it’s no joke. Recent bummer news and losses in the small NSCLC community we are a part of further discouraged us recently. However, upon the most recent review, March 1st, everything remains stable.

[High five!]

If you would like to be hands-on helpers, we now have a Caring Bridge account that lists tasks on a calendar as requests for help. Check it out. It’s in early stages but I’m trying to update it daily. My blog posts related to his condition will also be copied to that account.

Three Deer

At 11:00 p.m. Monday night I drove down our street away from our house, turning left at the stop sign onto 7th street. I slowed as a mule deer caught my attention; she stood in the middle of the street surrounded by a soft, hazy strip of white from a single streetlight above. She didn’t move. My hands, slightly trembling, fell from the steering wheel to my lap as I sat still, watching her, my foot held on the break, waiting. She inched forward a few times, her gait slow, wandering, and then she stepped into the grass. There, another deer stood with a fawn. I watched them as they stood together for a few minutes and I imagined the quick, red muscles of their hearts beating.
Beating.

Beating.

“Mommy I’m scared but I’m brave,” Raine had said to me repeatedly that evening. He had said it while he gripped my neck when I carried him from room to room; after he first saw the truck with the red lights pulling into our driveway; before he asked me, “What if daddy doesn’t come back?”

Beating.

Beating.

I imagined those beating hearts again as the deer remained still. I heard beating that could echo into the bones of their slender brown frames. Aren’t they us? Aren’t we the same? Protect our young. Survive. I switched my foot to the gas pedal and the car crept forward. The sound of the engine stirred the three of them into a hustle of perked ears, chins raised, a few hooves lifted. Then they rushed into the darkness behind the hedges toward the black dampness of the creek.

***

I kissed Raine and walked out of his bedroom earlier that night, leaving him to play games with daddy on Dan’s phone. At one point, Raine came running into the living room to ask me a question. As we talked, I heard Dan making odd, loud and long grunts from the bedroom. Raine ran back to his room and I assumed the sound Dan was making was just part of a silly thing they were doing.

But the sound persisted. It occurred to me that maybe they weren’t playing and something was wrong. But that also seemed a little outrageous for me to think.

When I was in elementary school I remember being taught the words predator and prey. We learned the distinction of one creature eating another creature to survive, and that every creature essentially held their own precarious spot in the great chain of life; a circle full of black and white sketches of insects, mammals, and amphibians. In one assignment, I took a newly sharpened pencil and circled pictures on a sheet of paper where different animals were depicted with bright stock photos. I selected the predators, enjoying the satisfaction of pushing the new lead tip and seeing grey specks pool on the paper. The ash of the pencil smeared as my left hand moved across the page: cheetah, bear, eagle, shark. On another page, I repeated circling as I identified prey. Sometimes you had to think about it–sometimes a smaller creature wasn’t prey. Be careful. The photos of a snake, owl, and coyote were left untouched.

“LEAH!” cried Dan desperately. I jumped up and crawled across the couch as fast as I could, pushing with my calves off of the arm with all of my might to try and leap through the air– a thrust of an adrenal buzzing blur.

I found Dan sitting on the edge of Raine’s bed, hunched over, slack jawed, trying to talk and tell me what had happened but his words were slurred. I dropped at his feet and grabbed his legs. He was only in the shorts that he wears to bed and his flesh was so pale in the bright light of the hallway. His face was red and his tender grayish blue eyes–like the soft cap of a gnatcatcher–were terrified. He had lost control of himself; his body seized by an error in operation while he remained conscious and felt his head and limbs jerking. He repeated over and over again he didn’t know what happened, he didn’t know, he didn’t know, he didn’t know…

“Can you hear me and understand me? Can you grab my hands? Can you feel me touching your feet? With your sight, can you follow my finger moving?” I asked questions rapidly like I knew what I was doing but I was desperately making things up. I grabbed his cell phone on the floor and dialed 9-1-1. Raine hung over my right shoulder, burrowing into me like a fox forcing a tunnel into the earth. Raine’s tunnel was searching for attention.

“Raine, daddy feels sick. Can you help me and daddy? Can you go get daddy a shirt to wear?”

I alternated listening to instructions from the 9-1-1 dispatcher and giving Raine items to locate and bring to daddy.

Keep him on the bed. Don’t move him. Don’t give him water or food. If he has another episode, don’t try to stop it. Raine can’t reach daddy’s coat in the closet. Raine can get a chair from the dining room to stand on. The ambulance is on its way. I need to call the oncologist. Raine can’t find daddy’s shoes. Try opening the door to the garage and looking at the bottom of the steps. Dan worries about affording the ambulance. He worries that he caused this; he over-exerted himself exercising and doing yard work the past two days. I rub the back and top of his head, the newly shaved shafts of brown give easily under the weight of my massaging fingers. Uninterested in letting go, I keep working over and down to his neck and shoulders. His skin is hot. He put his shirt on. Raine drops Dan’s shoes on top of a small pile of clothing he has collected. There is a knock at the door.

***

I turn left from 7th Street onto Hendricks Road. Raine is tucked into bed, asleep in clean, white sheets, safely at our neighbor’s house. There is a knot in my stomach but my heart is beating steadily.

Beating.

Beating.

“Do you want me to sing you a song?” Raine and I had held onto each other as we lay in his bed after the medics left with Dan. I sang three songs. Then Raine sang a song to me. And I sang one more.

“I didn’t see daddy sick,” he worried.

“Mommy didn’t see daddy sick either.” I ran my hand back and forth across his back. “But daddy talked and told us he was sick and then we were able to help him. You were such a good helper!”

“I ran as fast as I could, mommy. I ran so fast! But I didn’t get daddy his hat. He doesn’t have his hat!” Raine frowned, struggling in his consideration of what was forgotten. We were in our warm stretch of February, no need for big coats, hats, or gloves.

“You brought him his favorite hoodie and he can use that if his head gets cold,” I pointed out. That satisfied him and he was quiet. The lids of his eyes met briefly and then parted. He would be asleep soon.

Hendricks road took me into the black night of the country, through darkened vineyards, orchards, and farms, to reach the hospital at the foot of Rex Hill where Dan waited. I found him awake and alert but with bloodshot eyes, laying on a stretcher covered with safety pads. He was like a horse who was demoralized to be stabled at night when the air was so warm and the moon was full. I suddenly understood the deer earlier, stirred and busy, keen to explore.

We would learn days later that some of Dan’s brain tissue had become swollen near decaying lesions; the irritable ghost of cancer spreading disruption.

Sadness and Fear

This week I had my first dream in which I was living and Dan wasn’t. I don’t think my entire life, I have had a dream like that. It was confusing–as most dreams are–with jumbled characters and circumstances. I do remember that I was in a building that housed many rooms like a school, as well as a room for movies. There was music playing in certain rooms. There were groups of people and friends. I think I was in Colorado because Hattie and Sarah and Ryan were there. I went to talk to them at one point about how I could no longer watch / listen to the things that everyone else was watching / listening to. It made me so very sad. I felt like an “other.” I felt the weight of loss and grief and the sound of things was different. My interpretation of images was different. I was very frustrated that I felt this way and no one seemed to notice or understand.

Of course, that is obviously how I feel now, even though I haven’t suffered loss. I am just grieving loss of a future. I’ve said it before and I’ll say it again—I’m grieving something that I was never guaranteed. Nevertheless, my reality is different than ever before.

At work on Wednesday, I was sweeping the floor of autumn leaves and giant dust bunnies that had gathered underneath our racks of sweaters and coats. I was alone and had Pandora on our computer playing my beloved Over the Rhine as a station over the store speakers. Apparently I need to stick with the “French Cafe” station because the song “I Will Follow You Into the Dark” by Deathcab for Cutie came on and I totally burst into tears. I recovered quickly and I am positive that it only occurred because no one was with me in the store, but honestly, this is what happens. It wasn’t even the first time that I heard that song since Dan’s diagnosis.

The first time, I was working on inventory at home for my business and was playing Pandora on our TV in the living room. As soon as I heard the first verse, I sobbed. My mother-in-law, Char, walked into the room while I was crying. She held me and comforted me and let me cry. I can honestly say that this hasn’t happened very often. I have actually held more people as they cry than vice versa. For example, in October, Dan’s best friend, Andy, visited with his wife Sara. While Dan napped, they indulged me in walking 3rd Street in McMinnville, so I could leisurely drink wine and shop on my birthday. At Mes Amies, I found a delicate and sweet monogram necklace. When I took the “D” necklace and tried it on,  Sara was moved to tears. She quickly apologized and I told her not to. I hugged her in the middle of the store. I wanted to comfort her, somehow ease her pain. I hugged her with every spark inside my being. 

I know this is sad. I know this is hard. I wanted to console her and let her cry no matter where we were and what was going on. I certainly did not care if strangers thought we were weird. This situation is absolutely awful. There is no way around that. I can’t help but want to comfort our friends. I can’t help but want to comfort family. It is a significant part of who I am—I am one who wants to please others. I want to comfort them and make them feel better. Dan is the same way. We learned very quickly in marriage counseling that we had that in common.

However, the day that I cried to “I Will Follow You Into the Dark,” Char caught me in that hard moment and she held me. She told me, “He is my son, but he is your Husband.” We both have so much empathy for one another, and I believe that helps us greatly. I despair at the thought of Raine growing up to be 37 and having a fulfilling life with a family and being diagnosed with Stage 4 Cancer. When Dan and I have tried to imagine what it is like to be in Jim and Char’s shoes, we can’t. It is unbearable. The unstoppable tears immediately sting with shock and despair. And we have only had the pleasure of loving Raine 3 small years.

So I try to text Char. I try to give her updates. I imagine how horrible it would be to live so far away from my sick child. I try to take care of Dan with the tenderness and love of a mother because I am trying to act on behalf of the woman who raised him. Now that I have a child, I am stunned at how extraordinary your love for your child can be; How crippling worry can be and how vital hope is.

I don’t know if I will have many other dreams like the one that I had this week. These dreams are disconcerting and aimless, but that is how my body is processing things. Despite his diagnosis, I don’t actually know what the future holds. I don’t have a map of our lives that tells me exactly when he or I will die. I just know that his odds have changed drastically. I tell everyone all the time though—I didn’t get a free ticket because my husband has cancer. I could get cancer, too. I could die suddenly in a car accident tomorrow. Nothing is guaranteed. That is what his diagnosis has taught me. All bets are off! What my dreams seem to reaffirm, along with shaking episodes, fearful moments, and grinding my teeth, is that I am truly suffering from not just anxiety but PTSD. It is not just a condition for veterans. It is for anyone who suffers a traumatic moment. Realizing this has taught me a lot about my life and a lot about myself right now. That week that Dan was in the hospital, we were given such horrendous news so unexpectedly, and it got worse and worse each day. At the time, I called them “Sucker-punches.” It was absolutely traumatic. 

At one moment, I thought I had days left with my husband. I am still waiting for that next sucker-punch. The next “shoe to drop,” so to speak. Anything that will continue the downward spiral that began September 14th.

Friends, help me keep looking upward and away, beyond fear. I am trying. I really am. Your support means everything to me.