Before And After
Before I was diagnosed with stage 4 cancer, I was always concerned about how to compassionately talk to a dying person, face-to-face. What do you say? How do you say it? Do you crack jokes? Talk about the weather? Pop culture? Politics?
After I was diagnosed with stage 4 cancer, I now worry about the transposed dilemma. How does a dying person talk to “living” person face-to-face? The same questions apply. What do you say? How do you say it? Do you crack jokes? Talk about the weather? Pop culture? Politics?
Since I’m not on my death bed, I don’t consider myself dying imminently. But the above rambling is a mild sampling of the type of thoughts that arise in my consciousness from time to time. It’s impossible to control which thoughts involuntarily appear in one’s head, but it’s possible to control how one responds to those thoughts after the fact. I try as best as I can to “think it” and then to “let it go“. An unhealthy, alternative response is to “think it“, “think it again“, “think it again“, “think it again“….. you get the picture.
For some wondrously strange reason, writing this post reminded me of one of the funniest scenes ever from the Sopranos HBO series. It’s not a “Before and After” scene, it’s a “Before and Waaay Before” scene…..
Since we’re all in a good mood now, here’s what I think is THE funniest Sopranos scene of all time: The “Mix It With The Relish” scene.
What’s your favorite funny Sopranos scene and, while you’re here, what are your thoughts on how to talk to a dying person? 🙂
Year Three
Wow! I just noticed that I haven’t posted anything on this god forsaken blog in almost three months. That’s a far cry from when I accepted WordPress.com’s “Post a Day” challenge waaaaay back in 2011. Being a total blowhard back then, I easily conquered the challenge and spewed some verbal diarrhea up on here every single day for the entire year. If you’re bored to tears (or you’re so weird that I wish you weren’t reading this blog), you can fact-check me by clicking on the “postaday2011” tag on this page and reading every post. 🙂
I’m stunned and thrilled to report to you that I recently “celebrated” my 3 year cancerversary 2 months ago. As you might guess, I’m quite a statistical outlier for a stage 4 lung cancer survivor. Did you know that lung cancer kills more people per year than breast, colon, and prostate cancer combined? Yikes!
My first two years of doing battle with the “emperor of all maladies” were a breeze compared to this last year. I’ve been feeling a relatively slow, but sure, decline in my physical and mental well-being over the last 12 months.
Physically, the standard chemo (Carboplatin/Taxol/Avastin), brain radiation (CyberKnife), targeted chemo (Gilotrif), and immunotherapy (40+ Opdivo infusions) treatments have killed my thyroid and severely limited my mobility. The peripheral neuropathy in both of my feet, my right leg, and (most recently) my mouth has been getting worse. The numbness is starting to creep up further beyond my toes and higher on my right leg. The “tingling” is morphing into “hot” pain. It feels like someone is slowly pulling up a stocking from my toes to my thigh.
Mentally, I’m feeling both anxious and exhausted more often. I’m finding it impossible to latch on to a new topic and perform a sustained, deep dive to learn more about it and revel in the warmth of a new understanding. And of course, it’s getting very tiring holding back those cancerous thoughts just chomping at the bit to burst through the door.
But hey, enough of the whining…. let’s have some fun while we still got time….
New Normals, Less Than The Old Normals
Every time I try to increase my level of physical activity, my feet catch on fire, my right leg turns to rubber, and somebody starts crashing cymbals inside my head. During my latest trip to the oncologist, I was gently told that this may be my latest “New Normal”. The implication is that more “New Normals, Less Than The Old Normals” may be on the way in the future. Of course, if I wasn’t a stage 4 cancer patient, I’d be freaking out like:
But since I totally accept, with Buddha-like coolness, my progressively devolving body, I’m Ok with the impending new normals. Um, well, I hope I am.
Chronic Blood Products
The title of this post is pretty scary, no? But hey, ’tis the sort of language one hears a lot when diagnosed with cancer.
Specifically, the latest MRI of my gnosh, performed on 11/26/18, states:
There are chronic blood products associated with the parenchymal lesions (i.e. brain tumors)
Want another good one? Try saying “vasogenic edema“, a la:
Localized vasogenic edema in this location is not significantly changed
Let’s move on to some scary words written into my latest chest/abdomen/pelvis CT scan performed on 12/3/18:
Interval increase in size of a left common iliac chain lymph node (from .7 cm to 1.9 X 2.4 cm), concerning for worsening metastatic disease
Ok, ok, enough doom and gloom. As I’ve said in a previous post, an excellent word that is joy to the ears of a cancer patient is “unremarkable“, as in:
Spleen: Unremarkable
Pancreas: Unremarkable
Gall Bladder: Unremarkable
Adrenals: Unremarkable
Kidneys/Ureters: Unremarkable
Yepp, you read that right. Seeing the words “unremarkable reproductive organs” on your CT scan report is exquisitely delicious!
Your Explanation Of Benefits
Whenever one of my healthcare providers submits a claim to my health insurance company for payment, I get one or more of these “Explanation Of Benefits” emails from my health insurance company.
Since I have cancer and I am constantly at the doctor’s office or infusion facility for ongoing treatment, I get lots of these “scary” notices. They’re scary because, as we all know, the cost for any health procedure/service is astronomically high in this country.
I always cross my fingers when I click on the link in the email to read the details because it sucks when one or both parties makes a stupid bureaucratic mistake and I get stuck temporarily with a bill for hundreds or thousands of dollars. It’s a pain in the ass to get the billing straightened out – especially when I’m not feeling too well and I have to play phone ping-pong with either the doctor’s office, the health insurance company, or both. What a shitty healthcare system.
In The Red
Before I get the go-ahead for each life-extending, bi-weekly, Opdivo immunotherapy infusion, the infusion nurse draws blood while I’m in the chemo chair. She/he then sends the sample off to the on site lab and they perform a series of blood tests right there at the facility. They look for gross anomalies, but the main metrics of interest are the white and red blood cell counts. If the counts are too low, they turn the patient away and actions are taken to bring up the counts before bringing the patient back. So far it hasn’t happened to me, but sadly, I’ve seen people who’ve driven from substantial distances get turned away on the spot.
The table below shows some of my blood test results as measured over the last two months. I have no before-cancer baseline to compare the table with, but I’d find it hard to believe that I’ve (or you’ve) ever had a clean slate of no out-of-range measurements.
Except for my TSH (Thyroid Stimulating Hormone) level, all of the “reds” in the above table are either just barely too high or just barely too low. We’ve been continually upping the dosage of levothyroxine I’ve been taking in an attempt to bring my TSH level waaaaaay down into the normal range of 0.4 milliunits per liter (mU/L) to 4.0 mU/L. I’m currently on 100 mcg of levothyroxine.
The sheer number of quantities they can measure in 15-20 minutes of analysis is amazing, dontcha think? Imagine trying to do this just 10 years ago?
Fire Extinguisher
Given that your feet are on fire due to chemo-induced peripheral neuropathy, here is the best way I know of to extinguish the fire….
Hell, I’ll bet it works for diabetes-induced podiatric nerve pain too.
I’m not a podiatrist, but I play one on the internet. Going forward, just call me Dr. Dozer.
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 🙂
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