August 10th 2020...bad news arrived last week

Don't be too fooled by the happy picture. We're doing our best to maximize the time I have left. Behind these smiles there is processing and grief. Last Tuesday at my clinic visit, I was told that they found some abnormal blasts again in my blood.  Life turned upside down after talking about future options with Dr. Cassaday.

At this point, there aren’t many options. I’m not in good enough health to attempt any more therapy. And even if i were to be in a better state, there is nothing on the table that could lead to a long-term remission. Therefore, I’m choosing to maximize quality of life in these last days. My timeline is uncertain (like everything in the cancer world, no surprise there).  Estimated time with my course of action is anywhere from 1-4 weeks. It all depends how fast the ALL takes over and pushes out my platelets and red blood cells out. It also depends on my stomach behaving and not having a bleed. A bad stomach bleed or nose bleed with low platelets would take me out at this point. My platelets were 13k on Friday.  I can receive transfusions to help this number, but at some point these transfusions stop working. The cells get eaten up by the ALL and don’t last long. You stop receiving bumps. This combined with the burden and time-suck of getting to the SCCA for transfusions it’s just not worth it. Once the transfusions (both platelets and red cells) stop working the plan is to go to hospice care and hope to stay at home for my remaining days.  The hospital is the last place I want to die, especially these days with such strict visiting rules because of COVID. Max peeps for end of life is something like three, and they all have to be close family, and kids under 12 are a wildcard and have special rules. Therefore avoiding the hospital is my wish.

That’s what I’m grappling with:1-4 weeks of life left. It all feels so sudden, I thought I would have more time. 2-3 months or something. But my disease is called Acute Lymphoblastic Leukemia for a reason. Once it gets going, it snowballs.  The only med that poses low risk and can do something is prednisone. So I am taking Prednisone which serves many good purposes: it attacks the ALL, it keeps my appetite up, and can ease the inflammation and pain if any tumors come up. It fixed my back pain which is huge because now I can actually walk around and do things I want to do in these last days.

The news is terrible and has taken over our lives.  Even with preparing a little bit for this day. It doesn’t feel impactful until it’s real. I’m sad about many things, but the two biggest ones are for Alpen and Briana.  Alpen won’t grow up with his biological dad and Bree has to get through this nightmare of a time. I’m using this app RecordmeNow to document some feelings and stories for Alpen (and Breezy), so that is something I can do to help Alpen with a memory of me.. But what do you leave behind for them? It’s all so sad to think about. It’s hard. I personally have come to accept it. There’s nothing else to do.

I think I’ve mentioned this on the blog before that I have been able to live a full life even with the constrictions of cancer. I have felt the love of a committed relationship with a wonderful partner, I have experienced fatherhood, I have traveled widely and worked jobs that didn’t feel like work. I experienced owning a home and starting a native pollinator garden. I was able to go to graduate school for a career I love in Ecological Restoration. I have worked/lived in many beautiful places and been paid to do science. I was incredibly lucky to be born white and in the United States, and lately, I've been more aware of just how much privilege this gave me. So yes, while my life is looking like it’s too short, it still felt full, and that brings me peace. I have lived honestly and purposefully.


These next few weeks I will try to surround myself with friends and family.  Bree is taking immediate leave and her parents are going to rent an AirBnB nearby to help out. My family can come down from Mulkiteo to help. It will be hard to balance energy and tasks, maximizing days, living for the present, but also recording clips for Alpen. As long as there are some quality moments with Alpen and Briana, the time will be well spent. We’ll probably try to do some regular things so life feels somewhat normal, and they say it’s good to keep the routine up for young kids too. I don’t feel the need for any bucket-list things. I’ll visit a few local favorite eateries. But for the bucket-list, It’s like, what’s the point? I’m not thinking about all the things/places I haven’t done, but trying to gain peace from what I have done.

If you would like to express any feeling or thoughts to me, the best ways are through emails, texts, and letters are all welcome. If you add a special story or memory of me that would be nice for me to read and for Briana to keep (she’s worried about losing our memories).  Please no flowers. We still got some growing in the pollinator gardens and the money would be better spent donated. In lieu of gifts and flower, I would encourage using the money on one of the charities I frequently donate to. Two I like in particular and why I like them is below (sorry not sorry but explanations got a little long).

Point Blue Conservation Science (Previously Point Reyes Bird Observatory).

I worked here for a spring at their Palomarin Field Station near Bolinas in Point Reyes. The place is amazing. I awoke to the wrentits and towhees and the sound of the Pacific ocean crashing into the headlands below. I then spent the day searching for their nests in the nearby chaparral adding to 45+ years of continuous research. The Point Blue Headquarters are in Petaluma now, but they have work sites and study populations all over California and Antarctica. I particularly like Point Blue because they do a mix of top research but then also apply their findings into the local problems for actual change. They have a stream restoration program which brings k-12 students to restore local rivers in the area--improving fish and bird habitat. They also have a rangeland program where they partner with local ranchers to improve soil quality and reduce erosion. They pay Central Valley farmers to leave rice fields flooded to provide food for migrating birds. They created an app for the coastguard to save blue whales by reducing collisions with container ships as they go through the Golden Gate. On top of all this they have some of the longest-running data sets of biological data to monitor forage fish, elephant seal, whale, and local white shark populations in the United States. All this data gives crucial information to agencies for protecting our natural resources and gives young biologists (like myself) chances to do hands-on research and experience a top-notch science outfit. . I’ve always been impressed with how many pots they have their hands in and how well they do all of it.

Cornell Lab or Ornithology. https://www.birds.cornell.edu/home/

More birds. Gotta listen to the birds. The Cornell lab, like Point Blue, does world-class research, but they also have conservation programs where they apply science. Again being very impressive in my book. They give money for conservation programs around the world to protect rare birds and their habitats. When you protect a whole habitat, you protect everything there--all the insects, plants, animals. Most of their conservation programs are community based conservation which is the best way to do it. Once you get the buy-in of the local community and give them a reason (cultural, economic) to care, then the protection of a bird is much better. Two examples their recent work is with the rare Araripe Manikin in Brazil and the Greater Adjudant Stork in NE India.  They also run eBird, a massive citizen-science program. With all of our smartphones nowadays, Citizen Science is the future of data collection.  I have been submitting birding checklists for 12 years. I encourage any birder out there to start submitting. eBird is revolutionizing statistics and citizen-style science. It’s just great

Family time on the couch, feeding Alpen a pecan bar so he would sit still. 

Just a funny art-deco style photo of Alpen that Bree took