Over the past year, Ken’s been trying new chemotherapies in hopes that we’d find one that would keep his Glioblastoma (brain cancer) at bay. In January, his MRI revealed new tumor growth in a totally new area which did not bode well and we switched chemotherapies again. Ken’s expressive language, memory and ability to read has been deteriorating and he is physically more fatigued as of late. He has been asking the doctor about a prognosis and she finally gave it to him last Thursday. It realistically seems that he will have between 6-12 months left. We had held out hope that he would outperform the odds but it is a very aggressive form of cancer.
He just shared this timeframe with our immediate family which will likely spur many of them to come see us (once they have their vaccines). Ken just got his #1 Covid vax on 2/20 and his #2 is 3/9. If you are wanting to connect, you can leave a comment on this post. Know that the response from him will be some days but he appreciates your thoughts. We want to be mindful of Ken’s energy and time.
It’s been a lot to process but we’ve been living with this potential outcome for a while since we were aware of the statistics. The kids are in the loop and each have counselors too (as do we) and so I think we are doing the very best that we can in this circumstance. Everything from his illness to homeschooling to the household have been (mostly) manageable to this point and we hope it stays that way for as long as possible.
We have been approaching each day with gratitude and have been able to spend LARGE amounts of family time together. We appreciate all we have–access to quality medical care for Ken, the resources to sustain our lifestyle and the continued support from our family & community.
We will continue to celebrate the good, high-functioning days–as well the rough ones too.
Love, Ken & Kali
From our recent trip to San Juan Island, Feb 16, 2021
Hi all, just a short update on my new chemo therapy. This past Thursday, my medical’s assistant Claire Stockhausen answered several questions for yesterday was the first treatment. The medicine is called Carboplatin and only needs to be administered via IV infusion once every four weeks. The first 3-5 days I’m expected to feel exhausted and possibly have some bad aversions to some foods… but thus far I’m not feeling any of that, which is great! I really hope it remains that way.
I’ll let you know how it goes over time, it will be another 2 months before we have our next MRI to see what’s going on. Fingers are crossed!
Hi folks, I hope you’re having a good weekend and enjoying the dry weather we’ve got here in Seattle. I’m very glad for that part.
Sorry to send just a short post, but I imagine most of you appreciate that. Yesterday I had my latest MRI and the prior areas from the past couple MRIs are hanging out without progressing. But there are two, new tiny areas in the front lobe that aren’t desirable. It’s a bit of a surprise as that area hasn’t shown any prior activity. But to keep them contained, I’ll need to switch to a new chemotherapy treatment. Unfortunately it may have some side effects, like nausea and exhaustion in the days following the treatment but I hope it is confined to only that. I’ll be starting that in a few weeks.
Since the New Year, I’ve been spending time making music, exercising, watching shows with Kali, hanging out with the kids and making the most of being in the house though occasionally we do get outside.
Thanks for your support… now enjoy yourselves and keep safe & masked! I will update with more details as they arrive.
Thanks for checking in on me. Forgive me for not writing sooner, but life has been pretty busy in my Morehouse School of Medicine project, and I’ve had little medical news to share until yesterday. On Friday I had my MRI (the first since September 3rd) which once again didn’t reveal any undeniable major health concerns. While the left side’s white tumor area hasn’t shifted around much, the corresponding red dot (in the left below) indicates blood flowing into the language area where the tumor was. While this isn’t good, it’s still too soon to know whether it’s expanding or not – we’ll learn more from my next MRI in late January. For now I’m thankful for my health!
Aside from that we’ve had good times, including a great 5-day trip to Long Beach on the coast in mid-October. The house we rented was just a couple blocks from the ocean’s edge and it felt pretty special to be somewhere (anywhere!) else. The house had some nice rarities: a pool table, an official Juke Box, a Karaoke machine and some video games. A string of delicious restaurants nearby also filled our tummies 🙂
Well, that’s all I got. Enjoy yourself in a SAFE, low-risk Turkey holiday. You’re in our thoughts.
Today I had my latest MRI and I’m glad to say it reflects some reduced swelling in the areas that previously showed contrast indicating growth of cancer cells. This improvement was unexpected by Dr. McGranahan, perhaps it reflects the positive side of the Regorafenib chemo medication which my pancreas eventually rejected, it’s hard to say. Anyhow the shrinking is good news, BUT know that the reduced swelling is temporary — it may last a month or a year, which is hard to predict. Time will tell.
Perhaps more meaningful and sad, yesterday was my last skateboard session. Due to my recent pancreatitis and clots in my lungs I now take blood thinner which makes skateboarding too risky since a fall might create non-stop bleeding. Thankfully I’ll be able to continue skating the safer “long board” on sidewalks, but rolling through the large bowls is now just a sweet memory.
Above all, however, is some significant pancreas news. For my pancreas to be healthy my blood’s Lipase value needs to be 70 or less – in July when I was taking the Regorafenib chemotherapy the Lipase value reached 278 during my terrible pancreatitis. Thankfully last week the Lipase had reduced to 69, and today it measured at 44! So donuts and chocolate chip cookies are FINALLY allowed again 🙂
And finally, know I’m AMAZINGLY GRATEFUL for all the donations for the Run of Hope and my Team Ken which already has 13 members! This all supports Seattle Children’s Hospital’s pediatric brain tumor research, a cause that reaches my heart deeply. If you’d like to donate, click here.
Last Fall, I participated in the Run of Hope benefiting Seattle Children’s Hospital brain tumor research. And this year I’m excited to lead Team Ken! We’re looking to raise $3500 by September 27th. On that day, the team (still growing) will each “run” a virtual 5k race from wherever works best for them. Donations are incredibly meaningful to help improve lives and advance medical research in this area.
It’s been a month since my hospital stay and I’m feeling better each week. I’ll share more medical details soon, but I’m committed to support the Run of Hope, knowing that it helps kids and families going through similar issues that I am.
I hope you’ll join me. Let’s support those kids and families the best we can.
Hi all. This blog post covers the ten days of stressful healing of my pancreas. Sadly my rare allergic reaction to chemo “Regorafenib” wasn’t obvious until the pancreas grew so painful that I needed to spend a long time in the hospital. Thankfully I’m home now, still taking it easy but being much more cautious to not offend my pancreas again.
Pancreatitis is Common
While my pancreatitis was an allergic reaction to my Regorafenib chemo meds, I’ve learned that pancreatitis is common: the U.S. has 275,000 hospital stay cases each year, 10 times as common as brain cancer. It’s sad to think of the many people suffering the worst pain of any medical issues.
Emergency Room Visit #1
On Sunday, July 5th, I awoke with a high but modest temperature around 101Âş – 102Âş. Given my cancer I’m extra concerned, so Kali took me to the ER around 10am where I was tested fully. My temperature went down and I was released in the afternoon. Part of their tests included Covid-19, which thankfully was completely negative.
Emergency Room Visit #2
In the early hours of Wednesday, July 8th, my stomach was feeling very painful, raising to a 6 on the pain scale of 1 to 10, with an occasional spike to 7 or 8. Kali took me to the ER early that morning and they followed with many tests including CT scans, and (thankfully!) Dilaudid administration which brought me down from that serious pain. The tests also revealed a blood clot on each lung, and I was officially diagnosed with pancreatitis and admitted to stay in the hospital for full treatment. My daily dosage of Regorafenib chemotherapy meds was halted.
Over three days the healing mostly headed in the right direction, moving slowly up from light liquids. By Friday I ate a light but solid meal, feeling positive and having no pain. They sent me home with an anticoagulant medication to ensure no more blood clots would enter my lungs (a new med I’ll need to take every day from now forward – clots are too risky). Sadly, that night the pancreatitis pain spikes returned…
Emergency Room Visit #3
Friday overnight, July 10th, my pancreatitis pain returned at a level 6 with an occasional spike to 7 and 8. Once again Kali took me to the ER. This time I was also reacting to the new pill anticoagulant, another unexpected allergy. Some very unusual swelling and red face skin was going on. They were considering sending me to the ICU if the allergic reaction didn’t stop. So I was given several medications, fluids and pain managements and was finally moved back to the Oncology floor (seven hours after my arrival — seriously frustrating).
That evening before bedtime I took the 9 pills provided, and maybe didn’t drink enough water…
The Most Painful Event of My Life
I woke up about 20 minutes after the 9-pill nap with chest pain that was already at level 8 and would often peak up to 9 or 10. EVERY BREATH struck me with this deadly pain, and EVERY BREATH had me scream very loud, including several cuss words. I expected my medications to be rushed as soon as possible, but was never told how long I might need to wait. Due to communication issues between the nurse assistant and the nurse who was treating another patient at the time, and the medication order and approval required of a doctor, this incredible screaming pain lasted about 1.5 HOURS before the meds were finally given to me. Holy shit.
A Calm Pancreas
Having arrived at the UWMC hospital on Saturday, July 11th, it wasn’t until Thursday, July 16th that I had healed enough to be able to eat light foods without triggering any significant pancreatic irritation. Each day meant various medications to slowly heal the pancreas and allow me to lessen the Oxycodone needed to keep the pain light. Thankfully this slower form of healing worked properly, and though it’s scary to imagine the same pain arising at home again, I’m now sticking to simple foods and pretty confident the pancreatitis is done.
During my hospital stay, I felt it important to focus entirely only on my healing situation. Each day I visited a couple hours with Kali but communicated socially with almost nobody. It felt a bit odd, but was much needed since my days were full of nurse and doctor interactions, naps, light meals, and a few Sudoku attempts. The nurse and doctor staff were fantastic and aside from the one mistake described above, I’m highly grateful for their treatment and care for me. Also Kali’s mother Linda came to take care of the kids and help Kali, very valuable, thank you Linda.
Next week we’ll meet with Dr. McGranahan and begin considering other chemotherapies to replace Regorafenib. It’ll take a couple weeks for the pancreas to heal fully, after which we’ll try a chemo that hopefully works well with my body. My fingers will be crossed.
My cancer’s area isn’t growing, but it’s showing more active blood cells
Hi folks.
While I enjoy sharing better news, today’s MRI results aren’t super. While it’s good that the cancer isn’t expanding beyond the original tumor area, there are more cancer cells growing versus simply being scar tissue. Once again this shows us my current chemo medicine (Lomustine) isn’t as effective for me as we had hoped. So next week I’ll begin using a different chemo, called Regorafenib. Despite a few more symptoms, it may be more likely to hold back the cancer, we’ll see.
To date my symptoms have been pretty light aside from aphasia causing some words to be slow to recall. The other day I saw a hummingbird and wanted to tell Kali, but I couldn’t recall the word “hummingbird”. Even recalling the name of some special people requires extra work for me — not ideal, but doable with practice. If I call you “dude” or “dudette” still know I care about you 🙂
And thankfully we’ve got plenty of other good news: Friday is Sidney and Calvin’s last day of school and they’re excited to have 10 weeks of play time (Kali got us a Nintendo Switch — many video games will occur!). For me, at some point over the next month I’ll be starting a 6-month volunteer work project for Google (Morehouse School of Medicine project to help close the racial gaps for battling Covid-19)… more details as that evolves. And Kali will have some time to rest from her major work as co-treasurer for Calvin’s school’s PTA.
We miss being able to meet others in person. So connecting through email, phone calls and video chats is special and welcome. Everyone has a unique set of challenges, and for all of you we’re wishing times as good as possible.
Hi folks. I’m wishing you well and good health in these challenging times.
Personally I’m glad to say my medical status seems to be stable at the moment. The chemotherapy I take once every 6 weeks or so causes my platelet count to go down around weeks 4-5, so I need to be extra careful since an injury could cause continued bleeding. The bottom line is no more skateboarding …at least until the platelets come back up. As for other symptoms there’s not much, aside from a bit of aphasia where some words are slow to come to mind (if they arrive at all), and an occasionally I need a nap. But all in all, not bad.
While I’m grateful for my relative health and my family’s, these recent times have been significantly saddening due to the news of how many Black people are being unsupported, injured and killed. There’s so much to be done in this world to help the Black community, and we all have a part to play. The sadness remains… not ideal times.
As for my next MRI on Thursday, June 18th, I’ll share a blog post with details of Dr. McGranahan’s insights after that.
Each Summer the kids and I have a dragonfly photo hunt in nearby Magnuson Park
Hi all,
Today’s MRI looked pretty decent. There are a few minor, small dots of contrast near the central tumor area which are likely to be lightly bleeding spots from the radiation therapy. Their size isn’t very major and thankfully other contrast areas aren’t showing growth since the prior MRI. One fairly common issue from Lomustine (my new chemo medication) is a reduction of platelets / white blood cells. Thankfully it’s not causing any physical symptoms but until the platelets come back up I’ll be running for exercise instead of dangerously skateboarding – one spec of sadness in a life that’s otherwise beyond expectations.
As for our entire planet, Covid-19 is causing significant issues for many. We’ve got you all in our thoughts and are wishing you good health and mental wellness. Hang in there, I’ll send another update after the next MRI in 8 weeks.
