Turning of the Tide

When Juliana and I were young, our Dad would put us to bed at night by telling us a story which he made up on the fly. These stories were all about a girl named Joyce and he always started the evening’s story by saying “The last we heard about Joyce….”

Being that it’s been a beat since my last update, I feel like I should start this post with “The last we heard about Juliana...”

We got into a groove once treatment started at Fred Hutch and there really wasn’t too much to report. Juliana’s treatment cycles were every two weeks and we found a fluid rhythm that ebbed and flowed based on the number of days between her last treatment. February and April scans showed slight reduction in the tumors’ size, and the doctor suggested waiting12 weeks (6 treatments) before new scans. Subsequently, the side effects of the treatments intensified, and eventually the cold sensitivity became too much for Juliana to bear. Her doctor agreed to remove the drug from the treatment regimen that was causing this side effect, and doing so created a much needed improvement to her quality of life.

Spring started springing and Juliana took multiple opportunities to get out of her house and out of town. Our annual spring break trip took us to Whidbey Island for a few days of rocky beach walking, driftwood collecting, junk food eating and lounging in front of floor to ceiling windows looking out at stunning water views. On the heels of that trip, a nourishing girls weekend on Vashon Island with her besties. Loved ones visited from afar, including a heart-filling week with our sisters Chloe and Whitney, who live in North Carolina, and uncles visiting from Oregon, California, and North Carolina. At the end of May, Juliana pushed her treatment schedule by a week to allow her to go to the wedding of some dear friends IN MEXICO! In June she travelled to Portland twice - once to see Della ride in a horse show, the second for our Mom’s birthday. Early July had her back to Portland for Hudson’s birthday and basketball game, then back  to Vashon for some more soul massaging time with her framily. Juliana’s bucket has been consistently replenished and the adventures good for her soul.

In June, Juliana ended up in the hospital for a few nights after an MRI revealed she had several very small blood clots in her brain. Her medical team thoroughly investigated multiple avenues, but ultimately decided to adjust her blood thinner due to the increase of blood clots there and on the valves of her heart. After this, another adjustment was made to her chemotherapy regimen, so now down to two meds instead of four during treatment. By early July, Juliana started experiencing new discomfort. With scans scheduled for the second week of July, she decided to forgo her last treatment before scans as she already was feeling pretty poor and treatment was definitely not going to make her feel better.

Throughout, Juliana never complains. Despite the side effects of nausea, exhaustion, abdominal discomfort, and double vision amongst others, she rarely shares how the physical challenges of going through chemotherapy affects her. When her people are around, she lights up and continues to engage in the most genuine, present, and intentional ways. Always asking after others and remembering the smallest of details that makes everyone feel authentically seen. When she engages with you, she makes you feel as if you are the most important person in the room; it’s such a special gift to receive and honestly, so rare.

Knowing how sensitive and in-tune Juliana is with her body, and knowing she was experiencing new pain and discomfort, we all sat with knots in our stomachs, not speaking the words we were hoping not to be true.

Last week we were able to discuss the results of the most recent scans with Juliana’s doctor, and the results confirmed our collective fears, showing the chemotherapy is no longer working. The cancer has resisted treatment and the tumors on her lungs, lymph nodes, liver and spine have continued to increase in size.

The Folfox treatment she was undergoing was the heaviest hitting treatment her doctor could prescribe. We discussed some alternative treatment options but in the end the risk of unknowns and potential side effects did not outweigh the benefits. At this point, Juliana is tired. Tired of feeling shitty. Tired of not knowing how she is going to react to new treatments. Tired of living on a two week repeating cycle that leaves her with only a few days of feeling well enough to participate in life. From the initial diagnosis, Juliana’s goal was “quality over quantity”, whereas the quality of each day is of utmost importance. Juliana is not interested in sacrificing her time for unknowns that will most likely negatively impact her priorities and ability to enjoy each moment.

And so, Juliana has made the decision to stop her cancer treatment.

She has made this decision carefully, with full, open eyes, heart and mind, taking input from her doctor, family and her physical body who is speaking loudly to her. She has made this decision knowing full well what it means, but knows it is consistent with her priorities and values, and acknowledges that her body is telling her what is right.

With this decision comes a shift in her care. We are transitioning away from hospitals, multitudes of doctors, blood draws, scans, and treatment plans and towards a goal of comfort and safety; fully leaning into her goals of quality over quantity. We have spent this last week getting set up in the hospice system, with home visits from the hospice social workers and nurses, establishing new systems, contingency plans, and care providers. The hospice system is wide and diverse, offering a range of services to help support both patients and families as we face a path that seems unreal and unwelcomed. Simultaneously, Juliana’s pain seems to be increasing, so we are focused on getting that under control so she is more comfortable. There are days where sleep takes much of her time, and other days she has more mental and physical bandwidth to engage. 

My mom, Pete and I continue to take turns staying with Juliana to ensure she has everything she and Koda may need. Her vast network of friends and framily drop in often to check on her; sometimes staying for only a few moments and other times for as long as she will let them. She continues to be incredibly generous with her energy, and at the same time being fed by the energy and love being bestowed upon her. Her living room is often a safe haven for hard conversations, marked by simultaneous tears of anguish and relief via laughter. We are at a point we hoped would be a long way off, and Juliana continues to quietly lead us forward with bravery, thoughtfulness, honesty and grace.

We know you will probably feel the shattering effects of this news and may want to do something to help. At this point there is not much we can ask of her community, except to continue bestowing her with all the love, good thoughts, emails, texts and calls that you can. Please know she receives them all and feels the support, even if she is not able to return them in kind or right away. We are going to try to help her manage the energy she has to share, expecting it will be less over time. Please feel free to reach out to me directly if you feel the need to visit from afar or just want to connect with someone for support. This web of incredible humans Juliana surrounds herself with will be the collective web that holds us all up; know there is room for you here too.

Sending all our love through our tears.