Since November, more ups and downs. After being excited at the idea of going to an immunotherapy clinical trial at the National Cancer Institute in Washington D.C., we learned the trial filled up and I would not be able to enroll as we previously planned. Luckily, Dr. R at Mayo Clinic was able to prescribe me the same immunotherapy drug that is used for the trial in D.C. I received my first infusion of Pembrolizumab (AKA Keytruda) on December 27th. Dr. R warned me that often the scans look worse when starting immunotherapy. Something called pseudoprogression. Over the past few weeks since receiving the immunotherapy, I’ve felt mostly fine. I’ve been a little more tired than usual and have had some more headaches, but nothing too intense. Nothing I have been concerned about. I get a lot of anxiety at scan time, as you can imagine. The constant ups and downs of the news of the scans are torturing me and sometimes I feel like I’m ready to give up on all of it and see what happens if I just stop taking medicine, stop going to scans, and start living my life again.
“Patient reports that he is essentially terrorized by the scans and the uncertainty with the multiple recurrences of his disease. He does not have an active plan to take his own life, aside from that of “not coming to his appointments anymore.”-Dr R. Clinical Notes (12/22/21)
Dr. R senses my exhaustion and refers me to palliative care to see how they can help me better navigate this disease and my journey at Mayo Clinic. After my MRI scan on Monday morning, Alicia and I met with palliative care. I explained to the physician assistant how I am so terrified of scan days. I explain how before my scan results appointment, I have to take a drop of the liquid valium reserved for when I have seizures just to settle me down. The physician assistant seems very understanding and she is eager to help. She comes up with an idea: She proposes that instead of me going in for results, my parents can go in for results in my place. She says that if there is something that needs to change with my treatment plan, they would have the doctor call me instead. I like the new plan and am eager to move forward.
When they call me back to my 1:45 PM results appointment on Monday, my parents follow me back as I explain to the checker-in-lady that they are going to hear the results instead of me. She tells us that she has been instructed to bring me back specifically. Once in the room, we are greeted by Dr. U – the head of neuro-oncology at Mayo. We try to explain that I don’t want to be there for this news, but he insists that I stay. He goes on to explain that the tumor (now tumor(s) have grown significantly in my brain. Based on the scan, Dr. U is surprised that I’m not having any notable symptoms. When I jokingly ask if I need to start getting my affairs in order, he says “Yes Mr. Anderson, I think you do.” Radiation and surgery are not options at this time since there are now multiple spots on my brain. Dr. U thinks I need to start a new drug.
“Should the patient decide to forego therapy and go to palliative care/hospice, this would not be an unreasonable plan given that Avastin is not proven to increase overall survival.”-Dr U. Clinical Notes (1/17/22)
At this point, I stand up and tell Dr. U that I’m done and I’m leaving. As I turn toward the door he convinces me to sit back down and hear him out. He explains that he would like to put me on Avastin. He doesn’t agree with the logic of keeping me on Keytruda immunotherapy (even though it’s only been weeks since my first infusion). Plus, the immunotherapy has caused my liver counts to skyrocket – higher than they’ve ever been. Given that information, he suggests holding off on Keytruda at least until liver levels normalize and start me on Avastin in the meanttime. As a frequent contributor and reader of various online brain cancer communities, I am under the impression that Avastin is the drug you get when nothing else works. You take Avastin and when that stops working, you die. He tells me Avastin is not proven to extend my life, but may extend my qualilty of life. What the hell is wrong with my quality of life? I mostly feel fine! He tells me that he expects me to begin declining physically within a matter of weeks. I tell Dr. U that I need to think about his plan and get back to him. Dr. U is not flattered when I tell him that he may as well just take me out to the back of Mayo Clinic and shoot me. I know he means well, and I know I’m in good hands at Mayo Clinic – but Monday’s appointment left me feeling horrible. I understand they probably don’t want to give me false hope, but I feel like they left me with false hopelessness on Monday. How could I be close to hospice if I’m still getting around just fine? I’m still working. I’m still annoying Alicia as much as I can, and I still go into our spare bedroom a few times a week to crank up my electric guitar and pretend I’m a rock god on the stage of a sold out arena. Hell, I took a flying lesson a few weeks ago. According to my instructor – I even landed the plane by myself (you be the judge – see below) I am not dying – I am living life to the fullest!
Once Alicia and I are out of the hospital and on the road to home, I immediately call Dr. Deming in Des Moines. He sets aside an appointment for me at his office for Wednesday, 1/19. On Monday and Tuesday, Alicia and I sit in silence. Neither of us know what to say or do next. We are in complete shock. Lots of hugs and tears, but we don’t know where we go from here.
On Wednesday, we met with Dr. Deming in Des Moines. He’s got a nice new office in downtown Des Moines. It’s even named after him! He pulls up my scans and asks Alicia to hand him the blue folder on the table in front of her. The folder contains pages of notes Dr. Deming has handwritten as he tries to make sense of my cancer history and where to go next. Dr. Deming is concerned about the scan, but not convinced that I’m headed to hospice any time soon. He’s also not convinced that what we are seeing on the scan is all tumor. As Dr. R had mentioned previously, sometimes the scans look worse after initiating immunotherapy treatment – Dr. Deming says we could be seeing effects of immunotherapy. Dr. Deming agrees with Dr. U that it is too soon for more radiation therapy. That said, a colleague of Dr. Deming’s at the University of Iowa Hospitals and Clinics (Dr. M) has some new clinical trials targeting my exact tumor type. I have an appointment at the University of Iowa next Monday 1/24. As we left Dr. Deming he hugged me and said “Remember to be joyful, and give joy.”
We’ve got a bit of a plan for now, but mentally, I don’t know where to go from here. I don’t even know what to write next or how to wrap this blog post up into something nice and cute that makes you feel warm, fuzzy, and inspired. We can’t do surgery or radiation. Immunotherapy is on hold. The only treatments we have from here are unproven tests and trials, or drugs to improve the quality of life I haven’t even lost yet. The world keeps spinning around me a million miles an hour and I feel like I’m on pause, trying to find my place. My dad called me the other day and reminded me about how important it is for us to do the things we want to do and live our lives to the fullest. That means we’ve got some camping trips to plan. More concerts to see (Alicia got us tickets to Foo Fighters in August!) And I’m looking forward to singing the first 30-60 seconds of random songs I know around a campfire with my friends again when the weather warms.
I explained to Dr. U that I haven’t had a sip of alcohol in like three years because I’m under the impression that alcohol would not be good to combine with all the seizure medicines I’m on. Dr. U says there’s nothing wrong with me having a few beers every now and then. So for now I’m going to crack a Heineken 0.0 and enjoy the company of my wife and dog while we laugh at reruns of The Office. Joyful.
Justin, Praying for you often during your journey. Your a strong young man and you have a support system just as strong. God bless you!
Been years since we’ve chatted but want you to know that I’m thinking of you, praying for you, and love you. Sorry for the shit storm you’ve had to endure. God bless you and rock on like I know you can and do.
Stay strong and choose Joy. God bless you and your family.
Justin…You are in my thoughts often and in my prayers. Stay strong, smile but most importantly, breath.
Justin, not sure you remember me. My son Dustin and husband Dan and I met you in the elevator at Mayo years ago. You and Dustin shared stories about the same scars on your head from your brain surgeries. We’ve been following your journey since you started your blog and have been keeping you in our daily prayers. I have some really good vibes about what Dr. Deming is thinking about the scan and there are not new tumors. I’ll keep my fingers crossed that I’m correct! I think it would be great if you would publish a book about your journey. You certainly have a knack for writing!
We’ll keep you in our prayers Justin!!
Keep the Faith!
Carol Connor ☘
Dr. Deming did one better than tell you to be joyful and to give joy… he summed you up. Justin, I love you, dear friend. ❤️🤟🏼
I so understand every emotion you write about. I have had a similar battle because of my NSIP. (Lung disease)
The “…not active plan to take his own life…” part sounds too familiar. I want to live, but the constant uncertainty of my disease and hopelessness makes me want to just ignore it all and see what happens when I stop meds and doctors. But hours later I want to double my efforts to get a better quality to my life before the end!
Sometimes I wonder if they don’t give up too soon thinking a treatment is not working, when another couple weeks might prove it is. You feel totally at their mercy.
I have been following you from your first post and praying for you, I will continue of course. I think you should put every blog into a book, you are a very good writer!
In the meantime, similar to your doctor my daughter keeps telling me “look for the joy.”
That video gave me flash backs to landing in the Tenzing Hilary Airpor…But your landing was way more smoother. Nice job.
Hang in there, and if you are planning on camping, let me know. I want a rematch of Mexican Train.
Choose joy, and give it to God. Praying for you guys ❤
As always “love you man” remember all the laughs we had when putting on the silly hat and saying “John Cheshier”? I still laugh when I think about how much fun you and I had doing this😂🙏❤️