After another exhilarating start to the new year, things seemed to start settling down. Physically, I was recovering from the hospital stay while continuing to manage my PICC line and constant antibiotic cycle. The pain in my ass was decreasing, I was starting to gain more of an appetite while putting on some lbs, and I was close to being done with the antibiotics altogether. All professionals had agreed that we needed to hold off from conducting surgery to clean the wound/infection as I was too weak/unstable; surgery was a discussion to save for a later date. However, at the time, the antibiotics were effective in fighting the infection in my tailbone (called Osteomyelitis), yet my CEA count was rising as I was off of chemotherapy for so long. The CEA is a tumor marker in your blood which indicates how active the disease may be. We all carry this blood marker in our bodies, with the average/healthy range being from 3-5 (don’t ask me the specifics or for a breakdown, I’d have to refer you to Dr. M!). My CEA has been as high as 68 when I was first diagnosed in October of 2017; at this time in February of 2020, my CEA was at 40.9 (increasing from 11.1 in November). This was not a good number to be at.
At this point, I was working with a new oncologist (Dr. L had retired in August); Dr. M was my new dude, and I give the guy credit- he’s constantly scheming and researching new methods to dominate this disease. Our goal was to complete the cycle of antibiotics and then address the cancer that was continuing to grow. As I was at the tailend of antibiotics, Dr. M was looking into clinical trials at UCSD, as well as a relatively new type of cancer treatment called Immunotherapy. We would soon decide what approach to take regarding the cancer.
At the end of January, I finally finished my antibiotics! No more waking up every 8 hours to switch them out. No more daily flushing of the PICC line. No more weekly cleanings of the line. Finally, I could take a real shower again and get that damn PICC removed… And it was about time- the line was getting blood clots and extremely slow during infusions, I had dodged a bullet in that it wasn’t completely clogged (they would have to remove it and place it in my other arm). On the last day of antibiotics, my home health nurse came over to remove it. It’s a simple process (I don’t watch), I lay on the bed with my left arm extended out, my Nurse tells me to take a deep breath and exhale slowly as he pulls the whole line out in one swift motion. It’s pretty gnarly, the line is about 18-24 inches long; weird to think that it was placed in a vein and floated all the way to the heart atrium.
February of 2020 rolled around, and on SuperBowl Sunday, I planted my very first two Cannabis crops! This was exciting for me, and at the time, I never thought it would lead to the creation of this blog, but here we are. Anyways, the crops were planted, a new project to keep me occupied with. I was still battling through pain from the cancer and recovery from infection, although I was getting stronger, gaining weight, eating more, and finally starting to catch some Zzzzz’s after months of insomnia. Shortly after completing antibiotics, I met with Dr. M to discuss plans to address the cancer. Dr. M wanted to stay away from chemotherapy as I had already completed four different types; the side effects were hit or miss- but when they hit, damn, they hit hard. He was more concerned that more chemotherapy would crush my immune system, leaving me vulnerable to the osteomyelitis infection to return in full force. Therefore, Dr. M proposed we look into a combination of Immunotherapies called Nivolumab and Ipilimumab. Immunotherapy is very different from chemotherapy. Chemotherapy is effective in that it kills off all cells, cancerous and healthy (leaving you with mean side effects). Immunotherapies actually use components of your own immune system to fight the cancer itself. There many different types of Immunotherapy to stimulate or boost your immune system; it’s quite fascinating and I continue to marvel at modern medicine. Also, many patients report less severe side effects when on Immunotherapy treatments compared to chemotherapy.
These conversations were taking place in the middle of January. The plan was to start the Immunotherapy treatment on February 6th, 2020. I would receive an infusion every three weeks, and the infusions were only about an hour long! This was a breeze compared to some of the other infusion visits I’d have to sit through. My first experience was simple, except that the first nurse couldn’t find the vein and stabbed me with the needle 3 times until she called in a different gal. At this point, I’m used to the poking/prodding, but damn lady, find the vein already. After finally getting the vein and a brief Joe Rogan Experience (podcast), I was walking out of Moore’s Cancer Center just 60 minutes later with my roomie driving me back to Oceanside. We try to make treatment days a little special; usually capping it off with a Lou’s frozen ‘Za. Obviously, for my first infusion in months, we had to make a sausage and a cheese (with a piece of Cheesecake for dessert… Nommmmm).
I didn’t experience any negative side effects after my first infusion. I always anticipate something within 7 days of an infusion, but with these drugs- nothing. The only real negative side effect was a few moments in which my body seemed to be asking, “What the hell is going on?”, resulting in my temperature getting out of whack, including hot/cold sweats. When this would occur, I’d simply rip a bong and go lay down until it passed, usually shaking it off within 60 minutes or so.
The Immunotherapy infusions was the easiest schedule yet! I’d receive my first infusion on February 6th, followed by my second 3 weeks later. After that, I only needed to go back once every 4 weeks for April, May, and June. If the body was still stable and hanging in, we’d continue with just Nivolumab every 4 weeks from that point on.
I had a really good response from the Immunotherapy. As mentioned, going into treatments, my CEA was high at 40.9. After the first infusion, it dropped to 25.3! From there, it continued to decrease, proving the Immunotherapy effective. As the Immunotherapy was working, I was physically starting to feel better and better. My butt wasn’t hurting as bad, the infection was under control, and we were beating up the cancer with the new Immunotherapy approach. I was even able to start sitting down again for longer and longer increments.
As the Pandemic hit, I found another silver lining in that I was able to go back to work again. Just after my third visit and Spring Break for my school district, we transitioned to the online or “Distance Learning”. This allowed me to get back to work from home (physically being in the classroom was likely unrealistic). Although the Pandemic is horrible and has had a negative impact on many people, I was fortunate in that I was able to teach again. As always, it was reinvigorating getting back into teacher mode. I missed my students and coworkers tremendously, and although I could only see them virtually, it was enjoyable every day- bringing something new and a solid routine.
We finished the year virtually around mid june, and just two weeks later, I finished what was my last Immunotherapy treatment. Everything was going smoothly except for two concerns. The first was that my CEA managed to slightly increase in between my penultimate and final Immunotherapy infusion. Naturally, I don’t dig the idea that the CEA Tumor marker is increasing while I’m on treatments. The second concern was that my lungs were feeling extremely heavy. I had developed a cough, shortness of breath, and even wheezing in the lungs. I had wondered if it was Covid-19, but I couldn’t track my whereabouts to a point in which I would have been exposed. I was (and still am) hardcore practicing social distancing, wearing a mask, gloves, etc. in an effort to avoid the Covid. I attributed the breathing/lung difficulties to overdoing it with the cannabis- maybe I was blazing too much? Obviously because of this, I stopped smoking to give the lungs a rest and hope to see improvement.
Dr. M had lined up a CT scan for me after my final Immunotherapy treatment. He would use this scan and compare it to my previous scan from January (before I started treatments). The scan showed some really positive signs- although my CEA had slightly increased, it was obvious from the scan that the tumor itself had shrunk in size. There was another problem though, Dr. M immediately noticed the irritation in my lungs; the lower lungs were inflamed and irritated. He diagnosed this as Pneumonitis which is actually a side effect from the Immunotherapy (thankfully it wasn’t Covid-19!). Pneumonitis is essentially irritation of the lungs but can lead to much worse problems such as infection or pneumonia. Dr. M made this discovery and immediately wrote me a prescription of steroids to help heal the lungs.
I started the steroids in early July. It was incredible, after just 3 days, my lungs began to clear up. By day 5, they were essentially “back to normal” again (keep in mind, I still wasn’t smoking the greens- this is the time to eat the edibles!). My doc gave me a long list of side effects or symptoms to look out for when on the ‘roids. One of the good side effects was that I’d likely gain some weight- and damn, Doc wasn’t kidding. When I started steroids last month, I was weighing in at 114 lbs. By now I’ve moved up a few weight classes, tipping the scale at 130 lbs! This doesn’t sound like much, but for a little guy like me, it’s huge! For the past month, I’ve finally had an appetite again and been putting on good, healthy weight… Although, I’ll admit, at times my sweet tooth gets out of control- Love me some cheese danish.
I did heavy doses of the steroids for 2 weeks and am now on the “weaning” schedule. Apparently with these ‘roids, it’s not good to just stop the drug. You have to slowly work the body off of them. I’m excited because I am now on my last 5 days of using the drug. With that, I’m thrilled to say that physically, I haven’t felt this good/healthy in probably 18 months; since before my last major surgery in February of ‘19 (remember- I was dominating Men’s League hockey haha). Mentally, I’m in an even better place. I understand it’s odd to read that- some might wonder how somebody with a cancer prognosis such as myself can be genuinely happy. As mentioned previously, I’m at a point in which I’ve accepted my diagnosis and understand that this is my path. Once you accept this, it gets a lot easier to just live and enjoy life. I recognize that this is far beyond my control; I can only control my attitude and perspective on the given scenario.
I may be battling stage IV cancer, and while it ravages my body physically, I will not allow this disease to quell my soul and spirit, optimism, or the beauty I perceive in this world. I believe the best way to beat cancer is to maintain that mental edge; hold that over the disease, perpetuating a mean attitude towards the illness, knowing that it’s you vs. cancer and that you’ll do anything it takes to beat the disease. Although the body physically revolts, it is up to the individual to stay mentally sharp.
Moving forward, there are still many unanswered questions. Currently, I am finishing steroids and meeting with surgeons to determine whether or not I’ll need surgical intervention to address the cancer again, along with the butt wound/osteomyilitis. Unfortunately, it’s unlike the osteomyelitis (infection in the bone) will heal naturally, rather it would need surgical intervention which would require part of the infected tailbone to be removed, along with an extremely thorough cleaning/disinfect of the site. While in there, it’s possible a different surgeon would go after the tumor. Although it can still be hard for me to comprehend, this would indeed be the most intensive and extreme surgery I would take on yet. I’ve noticed a pattern that as I continue to grind against the disease, the stakes continue to get higher and higher. There are more risks and vulnerabilities with each step.
Yet it all goes back to what I can control: my attitude and perception. There are times when these discussions and deliberations can get intense and overwhelming, and in these moments, I simply take a deep breath and remind myself of what’s in my control. Although cliche, I will continue to take it one day at a time, one step at a time. I will continue to hold the mental edge over my disease, and I’ll continue to truly enjoy each day by laughing, smiling, smoking awesome home grown greens, and enjoying time with my family and friends. I look forward to keeping everyone updated about my journey with cancer through The California Kid blog, and I’d love to hear from you- please don’t hesitate to email or comment. And as always, keep grindin’, people! Love you all.
