Fire And Rubber
As I write this, my feet are on fire and my right leg feels perilously like rubber when I walk. Oh, and someone has turned up the volume on the ringing inside my cranium. Those are the symptoms associated with the inflammation caused by my brain tumors. In the worst cases of inflammation, my sense of balance also deteriorates and I experience small, fleeting headaches in the back base of my head.
These symptoms have been ebbing and flowing over the past couple of months. They are more annoying than painful, but the worse they get the less mobile I become. They are less annoying in the morning when I get up and then they seem to get worse during the day.
The first time I experienced these symptoms my oncologist put me on steroids. The steroids alleviated the symptoms by decreasing the inflammation but they came with their own uncomfortable symptoms (crazy sleep patterns, anxiety, puffy pie face, huge appetite). When I stopped the steroids, things returned back to “normal“.
Since the symptoms of brain inflammation have returned yet again, my oncologist has given me the now familiar choice: I either go back on steroids for the umpteenth time to suppress the inflammation or I become sedentary and wait till the inflammation (hopefully) subsides.
For now, I’ve chosen to stay off the steroids and remain mostly sedentary. If I start getting headaches and a decreased sense of balance, I will go back on steroids. Do you think it’s the right choice?
Powerful And Dangerous
Like many cancer drugs, Opdivo is very powerful and potentially dangerous. It changes your immune system forever. In addition to killing cancer cells, Opdivo can attack any organ in your body during treatment, or even after it’s discontinued. One of the more well-known and common side effects of Opdivo is that it can kill your thyroid gland.
The main job of the thyroid gland is to make the hormone thyroxine, also known as T4 because it has four iodine molecules. The thyroid also makes the hormone triiodothyronine, known as T3 because it has three iodine molecules, but in smaller amounts, explains Cathy Doria-Medina, MD, an endocrinologist with HealthCare Partners Medical Group in Torrance, California. “The thyroid gland makes mostly T4, [and] the T4 has to be converted to T3, because T3 is the part of thyroxine that actually does the work,” she says.
The pituitary gland at the base of the brain controls hormone production in your body. It makes Thyroid-Stimulating Hormone (TSH), which tells the thyroid gland how much T4 and T3 to produce. The TSH level in your blood reveals how much T4 your pituitary gland is asking your thyroid gland to make. A normal range for TSH in most laboratories is 0.4 milliunits per liter (mU/L) to 4.0 mU/L. If your TSH levels are abnormally high, it could mean you have an underactive thyroid, or hypothyroidism. – everydayhealth.com
With that 1D, sequential, textual intro to the pituitary/thyroid/TSH/T3/T4 feedback control system in our bodies, here’s a simple, 2D visual representation:
Ever since William L. Livingston introduced me to the brilliant, but underappreciated, work of William Powers I have a tendency to think of the human body as a wondrous, hierarchical, interconnected, aggregation of thousands of little negative feedback control systems. Ah, but once again I digress. Time to kick out of enginerd mode and back into C-patient mode.
The graph below shows how my TSH level has varied over the past few months. Starting in May, my TSH level zoomed off the chart. The symptoms I started feeling were increased fatigue and increased sensitivity to cold.
Levothyroxine is a synthetic substitute for the T4/T3 hormones produced by the thyroid. Sometime in June, I started taking 25 mcg/day of Levothyroxine. Since my TSH level is still way above the maximum “normal” level, my dosage has been bumped up to 75 mcg/day.
Part of the “fun” of having cancer is learning all about how different subsystems in the body work. Every time a new complication pops up, I research the subject in order to understand better what to expect and how to resolve the issue or ameliorate the symptoms.
The Exact Dates
As to be expected, whenever I tell people that I have the big C, they typically ask what type and when was I diagnosed. I could never remember the exact dates so I tell them “March of 2016” for lung cancer and “a year later” for the brain metastases. However, I recently found out the exact dates. Those dates will live in infamy!
Every two weeks when I get “infused“, the nurse prints out the Opdivo infusion order from the doctor:
The order clearly states the diagnoses dates as:
- 3/1/2016 Primary C34.31 Malignant neoplasm of lower lobe, right bronchus or lung Active
- 3/28/2017 Secondary C79.31 Secondary malignant neoplasm of brain Active
So now I know the exact dates, and so do you 🙂
My 29th Birthday
On Monday 8/27/18, I underwent a “routine“, tri-monthly, CT scan of my chest and abdomen. At the follow-up appointment with my oncologist a couple of hours later, he summarized the findings with: “everything is still under control“. On top of that, the troublesome lymph node that had shown growth for two consecutive scans did not show any further growth between the last scan and this current scan. Whoo hoo, another 3 month reprieve!
On Wednesday 8/29/18, I underwent my 29th, bi-weekly, Opdivo infusion. Since the Opdivo has been preventing the big C from “progressing“, I consider each infusion day a birthday to celebrate!
An Unlikely Duo
In a pseudo-creative twist on my “Wardrobe Addition” post, I decided to reposition the faux jewelry I wear on my wrists to illustrate what two topics are of utmost importance to me these days.
I can picture people who see this for the first time saying to themselves….
Damn, that bloke has some bitcoin AND cancer? I hope he’s still around when bitcoin hits $100,000/BTC.
Oh, in case you were wondering what the hell the Fitbit is doing in the picture, it was there already and I was too lazy to take it off.
Wardrobe Addition
I just received this lovely bracelet from my awesome “bitcoin” niece.
It goes nicely with my other “Fuck Cancer” memorabilia, dontcha think?
Unremarkable
When you’re battling cancer, one of the most comforting words you can see while reading through the medical-eze of CT, MRI, and PET scan reports is “UNREMARKABLE“. For example:
Upper Abdomen: Unremarkable impression
Of course, since “context is everything”, I’d wager that, in most contexts, hearing the word “UNREMARKABLE” is not very comforting.
The Macabre Reading List
Look at all the uplifting books I have read, am currently reading, or plan on reading:
Got any other recommendations?
Walking Around Drunk, Without Being Drunk. WTF!
After I was first diagnosed with lung cancer via a CT scan of my chest, I underwent a follow-on PET scan and a full head-to-toe MRI to look for any nooks and crannies in which factions of the emperor’s forces were doing their dirty deeds. Except for a small spot under my right armpit that lit up on the PET scan, the emperor’s forces were all concentrated in my right lung and chest area. The bad news was that even though the cancer was localized in my right chest, it wasn’t localized enough. It was deemed inoperable because there were multiple tumors and adjacent “lymph node involvement“. Bummer.
A few months after the initial CT/PET/MRI barrage, and following several, tri-monthly maintenance, chest CT scan cycles, I started to feel some weakness, numbness, and loss of motor control in my right leg. So much so that it caused me to limp slightly. At first, I thought it was due to lower back bulging disc issues that I’d experienced on and off over the years. The weird thing about this episode was that there was no accompanying pain. Hint: brain metastasis.
After reporting this symptom to my oncologist, he ordered a second MRI of my brain. Low and behold, the MRI detected 3 metastatic brain lesions; two on the left side of my brain and one on the right side. The largest of the 3 was located in a position (left side, posterior region) to be the cause of the numbness/weakness in my right leg.
After undergoing 10, half-hour, Cyberknife radiation treatments, my limp temporarily got worse due to the accompanying inflammation around the zapped tumors. It reached the point where I couldn’t drive anymore and I had to use a cane.
Over time, the inflammation subsided enough so that I could ditch the cane and start driving again. I was able to “feel” the accelerator under my right foot once more and I became confident that when I commanded my foot to switch between the gas and brake pedals, it would obey my command! At first, I had to keep lightly tapping the gas pedal so that I was constantly aware of where my right foot was positioned.
Fast forward to recently. About a month ago, I:
- noticed my right leg getting weaker and more “rubbery”.
- started waking up with small headaches in various locations (mostly at the back and bottom of my skull) that dissipated rather quickly after getting up.
- noticed a loud tinnitus type of ringing in my head.
- noticed my sense of “balance” deteriorating.
- noticed the peripheral neuropathy in both my feet (permanent numbness and tingling from my first line of chemo treatments) would “flare up” from time to time. By flare up, I mean they would feel “hot” in addition to the “normal” background numbness and tingling that I felt 24 X 7.
And to top it off, it seemed that the more I was active, the more the symptoms got worse. I noticed the worsening of symptoms over time when I went to the gym for stretching and light treadmill work. So, I stopped going to the gym.
After reporting these new symptoms to my oncologist, he immediately put me on steroids (yet again) to help squelch any inflammation. He also ordered a STAT MRI for the next day.
After undergoing the MRI, the radiologist’s report had mostly good news. No new tumors were detected, and the 3 existing tumors were not growing:
Notice the comments containing the words “vasogenic edema“.
Vasogenic edema occurs due to a breakdown of the tight endothelial junctions that make up the blood–brain barrier. This allows intravascular proteins and fluid to penetrate into the parenchymal extracellular space – Wikipedia
It’s natural for the body to send white blood cells to sites of injury in order to battle infections. The convergence of those cells on a small area causes inflammation -> vasogenic edema. The inflammation can cause fluid leakage and/or compress nerves in the immediate area, or both. Steroids suppress the immune system so that not as many white blood cells converge on the injury site, thus stunting the inflammation growth. However, the trade-off is that steroids work against immunotherapy drugs like Opdivo, which jack up the immune system to attack the emperor’s forces.
At first, I was put on 8 mg of decadron per day to suppress the inflammation. After noticing the symptoms diminishing, I was weaned off of the steroids. After noticing the symptoms coming back, I was put on steroids again, this time at a lower dose of 2 mg per day.
Next up is another MRI. Hopefully, it will still show no new tumors and inflammation stability around all three of the existing tumors. However, even though I’m still on steroids, my balance is still a little off and the weakness in my right leg still prevents me from driving. It feels sort of like walking around drunk without being drunk. Bummer, that’s what life in hell must feel like! On the bright side, the headaches are gone, the peripheral neuropathy flareups in my feet have diminished, and the tinnitus isn’t as loud.
In summary, here’s where I stand (err, sit?) today: I’m not driving and I stopped going to the gym. Hopefully, I’ll be able to get off of the steroids and I’ll be able to perform both activities again soon. Until then, it’s the same old, same old: bi-weekly infusions, tri-monthly CT and MRI scans, periodic and “specially needed” doctor appointments, continuous symptom monitoring, reading, blogging, binge TV watching (Sopranos + Ray Donovan right now), and lunch/movie dates where friends pick me up and drop me off.
Why am I here?
WTF?
Meh!
D'oh!
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