It has been a while since I last posted on my blog. At the beginning of the fall I started experimenting with Instagram to show my day to day life of living with brain cancer. You can follow my profile and check it out HERE.
Also, this fall semester I have been balancing the fatigue from my treatments with finishing my thesis and final requirements for my Master’s at UC Berkeley. My treatment cycles are every three weeks, and for the past three cycles I have been incredibly tired for about half the time. Whenever I have some energy, I try to be as productive as possible with my school work, so I haven’t been able to prioritize writing anything new for my blog. Instead, I have been editing the collection of essays and blogs I have worked on since my recurrence in March 2018 for my thesis.
I wanted to send an update today because October 24th, 2019 marks one year of receiving my immunotherapy infusions!
On October 22nd, I had a marathon of an MRI, doctor appointment, and an infusion.
Fortunately, my MRI is still stable! There is some increasing white matter, which my doctor described as scarring from my radiation treatments last year. This explains some of the symptoms I have been experiencing like memory issues, instability, and clonus in my right arm.
After we discussed the MRI, I brought up the most challenging symptom: fatigue. My doctor referred me to my neurologist to go over the possibility of reducing some of my seizure medications. I am taking a lot of, and on incredibly high doses, of seizure meds. Thus, this is worthwhile to consider since I haven’t had a seizure in a year. In addition, we are going to try a stimulant medication in case there are important days of work that I need to get through despite my fatigue.
Following my meeting, I went to my 18th, and one-year anniversary, immunotherapy infusion. It is a bit surreal that it has already been one year since my first infusion, but I think the fact that it happens every three weeks makes the time go by faster.
Every time I get my infusion, I look into the distant San Francisco skyline and wonder if the drug pumping through my veins is doing anything, but as long as my MRIs are stable (and the fatigue isn’t too debilitating), then it is worth it.
I have a lot more to say, so much I want to share, and many more essays to write, but I am going to stop for now.
Today, I am in Iowa City, Iowa for The Examined Life conference where I will have the opportunity to share my writing and join a community of people exploring the intersection of arts and medicine. I hope to gain some insight into how to transform my 48,000 word thesis into a larger book project.
4 Replies to “Stable MRI and one year of infusions!”
So glad you are continuing to do well. We think of you often and you are always in our prayers. We send love and best wishes. Keep on writing your blog We look forward to keeping up with you. Love Carole and Harvey
Hey Jeremy. I just found your blog via following you on twitter. I have an oligodendroglioma but it is currently not progressing – 3 years since diagnosis. It is too deep to be operable. I have done chemo and here in Australia they suggest leaving radiation as a last resort (read:just before you’re on deaths door??) We don’t have proton radiation available. I have never heard of immunotherapy being offered for brain cancer. Is this common in the USA? Do they have evidence it halts growth? I have been told quite bluntly because of my age, and the size of the tumour and its inoperability, it is just a matter of time before progression occurs, not if, but when. I find the whole watching and waiting (3 monthly MRI’s) almost unbearable at times. I will begin the journey of reading through your blog, I’m sure I will find many common emotions. Best of luck.
Hi Diane. Thank you for your message and sharing your story with me. Immunotherapy is still in the trial phase for brain tumor treatments. I am not part of any particular clinical trial because I don’t fit into any given the unique molecular characteristics of my tumor. Instead, I am doing my treatment off-label as part of an experimental approach that I combined with radiation. This is my third occurrence of my tumor as you may have read in my blog, so I have done the standard treatments before.
I completely agree that the watching and waiting (…the uncertainty of it all) is one of the hardest parts of living with a brain tumor. I hope you remain healthy and wishing you all the best. Feel free to message or email me via the contact form.
YAY for a stable MRI!