A recent comment

Recently received a long note and I thought it worth sharing. Not much more that I can or should add as these word speak volumes on their own, but as they relate to two fairly common medical conditions I wanted to make sure the word got out and that you were made aware of these potential developments.

If you’ve been reading my stories for any time at all you know that a few (or more than a few) revolve around illness in general and cancer in particular. My most read story, Lift On A Wave, has been recommended reading on several prostate cancer survivors reading lists, and a few other cancer survivor organizations have taken it up from time to time, as well. I chose to write about cancer from a survivors perspective because I’ve been down that road twice so far, and I’ve lost a very special soul to breast cancer. Erica was diagnosed with breast cancer shortly after I met her, so my own recent experience dealing with my wife’s breast cancer perhaps turned into a sort of benefit for us both, and I like to think I was stronger going through it a second time…stronger for her, of course. Now it turns out that the chemo agents Erica took in a clinical trial cause heart failure, and now we are dealing with the repercussions of that diagnosis. Yet…she gained ten years of solid health that she might not have ever had.

The point, if I may, is that getting old is not for wimps. Cancer is just one of the big ogres lurking in the shadows, but you really need to do everything you can to be prepared for all the many life altering changes that come your way with such a diagnosis. I write such stories to lead you to such an understanding, and I hope you don’t take the experience as pedantic or obtuse. My intentions reflect a hard fought empathy.

So, without more from me, please read through. Food for thought, I’d say.

From Wildwood55, via comment at Lit on Come Alive C1:

I’m 68. & just spent the last 2+ years in medical hell. Got Covid in Jan 2020, before anyone knew what Covid was. I thought I had a bad flu; sick for the 1st time in 25 years.

My 1st symptom the Sat morning of MLK weekend was a pain in my R throat. I went through all the classic symptoms of covid the first 7-10 days, recovered, then was dead tired for another 2 weeks, or so. In another 5-6 days, when I finally had enough energy to shave for the first time since MLK weekend, I found a lump under my R ear, about he size of a ping pong ball w-75% below the surface.

That was about the time the world had caught up w-covid, and everything had shut down. An MRI & 3-4 weeks to talk w-my doc, (she suspected a lymph node swollen from the unknown illness I had. No one, except myself suspected I had covid. I only realized it after hearing a doc describe his ordeal on BBC radio, via NPR. When he mentioned having no warning vomiting as one of the symptoms, I realized I’d contracted covid in Jan 2020.)

The MRI led to a CAT scan, which led to a PET scan & another 2 months passed in the process. The diagnosis was a nectric lymph node, surgical removal necessary. Oh, great, I thought, I get to have surgery during an effing pandemic. Little did I know, at that point.

I was referred to a head & neck surgeon. Because of covid & the shut down, check in was all consuming & hectic. It wasn’t until I was standing in front of the check in desk, waiting to hear, ‘Have a seat.’, that I looked at the sign on this, the 9th floor of Oregon’s med school clinic: Knight-OHSU Cancer Clinic.

My first thought was, ‘Good to see Phil spreading his Nike money beyond UO athletics.’ (I have a not so pleasant memory from working with mid-70’s Nike R&D.) My next immediate thought was, ‘Cancer clinic? Nobody said anything about cancer. WTF am I doing here?’

Five minutes with the surgeon explained all. I had HPV, (human papilloma virus), induced throat cancer.

‘Don’t you need to do a biopsy to be so certain?’, I queried.

“Oh, we will, next, but I see 3-5 cases per month, of men in you age group. A biopsy will be more confirmation, and necessary protocol.

“Not to worry, you’re healthy, a lifelong non-smoker, you have a 98% complete recovery rate.”, he, too confidently, assured me.

Not to worry, I think. Hell, ten minutes ago, I’m worried about surgery during a pandemic. NOW, it’s dropped on me I have cancer? I’m old enough my entire life has been, you get cancer, you die. I had paid no attention to advances in cancer treatment. I had lost family & friends to cancer, but no one close for 20+ years. I had no clue of my true potential life span or this 98% he’s talkin’.

I go to a different oncologist for a 2nd opinion. A combo DMD & MD in oncology I had consulted re: extensive jaw surgery I’d been needing, as a pre-cursor to much needed dentures. (Little did I know my soon to be discovered near future.)

Second oncologist, same conversation, almost verbatim, except the biopsy had been done, even down to 3-5 new cases per month. Holy crap, I didn’t even know HPV caused throat cancer in men, & it sounds like it’s in epidemic proportions.

Second oncologist offers me a spot in clinical trials of a new med, based on the same tech used to create the covid vaccinne. It’s the third round of trials, the doing phase, so I’m assured of getting the real thing, & not a placebo. I’m in.

Treatment is laid out: Surgery to remove my teeth, 6 weeks of experimental meds, robotic surgery to remove my R tonsil, and the lymph node, followed by radiation treatment.

Wait, what? Surgery to remove teeth? Huh? Seems, if you have radiation wwhere the jaws are involved, you can have no metal, (crowns or fillings), or your jaws will dissolve. Peachy. Gonna combine tooth removal with prior extensive jaw surgery. Time is of essence. Surgery is set for 3 weeks.

June 2020 I have tooth & jaw surgery. Just at 6 weeks, I have cancer surgery. It was my Gilligan’s Island experience: supposed to be a “3 day tour” turned into 12 days, (w-them wanting to keep me for 20 more days, until I insisted, NO.), because the ‘doctor w-training wheels’ assisting my oncology surgeon missed an insipient infection in the 6″ neck incision for 5 days, until I swelled up like a damn puffer fish, even though I’d had 3 successive days w- episodic bouts of high fever, profuse sweating, and bone rattling chills.

By the time the 2 different IV antibiotics were flowing, I was a sick puppy.

This was on top of my surgeon telling me, while still in the ICU, post-op, “Don’t do anything atenuous, & talk as little as possible for the next 3-4 days. We got VERY close to your carotid artery during removal of your tonsil. VERY close. We don’t want you to stress the fragile tissue.”

This was very casually delivered… Warning me to not sneaze, cause, heaven forbid, you might rupture your carotid artery & bleed out before your hand can readh the call button, kind of casual.

Life sure can take a quick turn, as Adrian continually points out.

Seven days post-op, I get the inly good news of 2020. No need for radiation, cancer is 100% gone, all removed during surgery. I start the climb of getting my swallowing back, rid myself of the feeding tube, and head home for post-surgical rehab.

As 2021 rapidly approaches, I begin to get an ear ache in my R ear. I have had exactly one ear ache in my life. It occured after the cancer diagnosis, but before late July, 2020, cancer surgery. Common symptom of throat cancer, I later learn.

It’s allergies, I tell myself. I normally get seasonal allergies from the fir trees I’m surrounded by. Like clockwork, every Fall & late Spring when the yellow dust covers everything.

My ear hurts cause of scar tissue I tell myself. Hell, even the docs believe me, and treat me for allergies. Doesn’t work.

As 2021 turns to Spring, PET scan is ordered, and the cancer is back. Prognosis is now 90% with radiation, 95% if chemo is added. Surgery is not an option, (too close to carotid the first time, no more tissue to spare.),

For the FIRST time, radiation, chemo & surgery are fully explained. Radiation & surgery are analagous; they are location specific. Chemo-therapy is systemic.

Why was this not explained BEFORE surgery? Seems to me, the treatment route SHOULD have been surgery & chemo, not surgery & radiation. Was the trial med supposed to replace chemo? nothing was explained, or offered, as such.

I should have seen this as a portent of things to come, but I had a serious brain injury in 2003, and make poor decisions unless I have time to mull them over. A cancer treatment protocol is not something I should decide without a week to think about. But, I got what I feel was a bum’s rush… you know, your life’s on the line, bud, gotta get right on this rapidly spreading cancer, and all that.

I decide to proceed at the same hospital where I had surgery & had the diasterous infection ordeal, among other very bad experiences. Oh, was that a mistake.

I started 7 weeks of radiation & chemo in late summer, ending in early October. To say it was a bad experience is a classic understatement. Mid treatment, i was ready to transfer back to the med school, the only issue would have been a 2 week interruption in my treatment, (not sure why, should have been easier, but the rad & chemo ttreatment mgt was a friggin’ nightmare, so why changed if I needed to escape.) Heard the saying, ‘Felt like I was being treated like a number.’?

Bingo. Right on. On spot.

The day after my last treatment, I was back at OHSU, the med school where everything began just over 20 months before. It was like night & day. Things were explained, if some in retrospect; empathy was on display, everywhere I went, vs antipathy as the prevalent emotion.

The prior expectation of post rad & chemo of ‘being tired for 6-10 months quickly went out the window 4-5 days after tratment ended. I breezed thru treatment, gained weight & got stronger. Then, on the 6th day, my body reacted. I was bed ridden for just over 4 months. Got so weak I could not get out of bed by myself. A little tired… yeah right.

Had a 12 week post treatment PET scan w- inconclusive results. Could be delayed healing, could be still existent cancer. The obvious decision I was facing was do I undergo a 2nd round of radiation/chemo. I was strong and healthy the first time, not so this time.

If it kicked my ass so bad, going in healthy & strong, what would it do going in weak & shaky? Up until 2020, I lived a life 20-30 years younger than my chronological age. I worked hard 12 hours a day, 7 days a week. Retired early due to the brain injury, I was actively rebuilding my house, fabricating & building custom & retored cars, going like I was still 35 years old.

After rad & chemo, I was acting 80, not late 60’s. If I went thru chemo & radiation, again, I’d likely come out permanently an old man. Did I really want to do that, or should I say eff it, fore go further treatment, rehab from the hole I was in, and live out what I had, in better shape?

Adrian’s writing brings a lot of this to the front, for me. Such are the decisions none of us are prepared for,, or even discussed when we are ‘educated’ in our modern society. Nothing in our life’s education prepares us for the choices we are faced with; I know this for a fact, because I got all the ‘education’ our society offers. You can’t get more than Piling Higher & Deeper.

Even opting for the vaunted MD, instead doesn’t do it. They tell people of the need to make the necessary decisions, but offer no guidance in making them.

Like most people, I procrastinated, employing tried & true avoidance until another 12 weeks passed, and a PET scan was repeated, just two weeks ago. I didn’t even check the results on line. I had no ear ache, and that’s been a better indicator than anything else. Last week, I saw my new oncologist, well another doc in training wheels, actually, for test results & a eyes on scoping of my throat.

This time the docs smiled, and were happy. my throat is healing/ has healed nicely, and there is no sign of cancer in te PET, or visually. But, I’ve been told that before.

Something I wasn’t told before is the radiation damages your salivary glands to the point you have constant dry mouth & throat. Painful dry mouh, not the wimpy ‘cotton mouth’ from good weed. May never heal, either, I’m learning. I drink thin Jello, all day, all night, nothing else helps.

Oh, the 6″ neck incision I mwntioned in passing? Seems that severs the parotid nerve, which controls the parotid gland. We have two, R & L. They take up most of our cheeks, and are the main salivary juice creators. Even if my salivary glands worked, any slight change in food ph, as sensed by the tongue, causes the parotid gland to cramp due to impared nerve function.

You know that slight twinge you get when food is real sweet, or sour? imagine, instead, someone jabs you with an ice pick, about an inch below your ear. THAT is called First Bite Syndrome. No real treatment; 14% chance of full recovery.

According to American doctors, it is ‘very rare’. European doctors, not so much; the European Society of Throat Oncologists MANDATES their members make patients aware of FBS any time they perform one of 6 types of surgery. The number one cause of FBS is called a ‘Neck Dissection’.

Exactly what I had done in 2021. But hey, FBS is rare in the states, right?

But, I’m alive. Quality of life, well, that’s just an after thought, if thought of, at all. It’s the price we pay, I guess.

Don’t know how, but things really ought to change.

Thanks A.L. If nothing else, you provoke thought. You young ones, take notes…

(A bit later, a second note arrived, adding a few additional details and thoughts. AL)

Addendum:

The real punch line for my 2nd decade of the 21st I forgot to mention.

Turns out, in spite of every doc I posed my theory to negating it, the covid I contracted is responsible for the HPV cancer becoming active. I studied both covid and HPV cancer extensively. Covid uses RNA protein strands as the building blocks of new virus cells. When it comes to illness mutated strands, it somehow activates these diseases, sometimes many decades before they would have naturally, if they ever would have.

This explains why the incidence of rare genetic related disease, normally seen in 0.5-1% of the population has skyrocketed to 1-2% since the onset of covid. That truly if skyrocketing when you consider 2% would be a 4x’s increase if the actual rate is 0.5% Bad enough to double if it’s actually 1.0%.

There is at least a half dozen known diseases, very rare diseases, which are being ‘activated’ by covid. Still very low incidence, but then there is HPV cancer, cervical in women, throat in men. This past summer, a group of Greek docs documented the first documented case of covid, (I had it too early to test), causing a women to contract cervical cancer.

It only makes sense. People don’t get sick when cancer first strikes. There are no signs when cancer begins; it’s why people are told it’s already Stage 4, when it’s first diagnosed. When I got sick in early 2020, the FIRST symptom was a pain in my R tonsil. Then the cancer spread to a lymph node, and covid may it swell up to ping pong ball size.

The circumstantial evidence was overwhelming; the science soon followed.

Take covid seriously; keep wearing a mask, and by all means, get vaccinated, if you are not. And if you have kids, grandkids, nieces or nephews, see to it they get vaccinated for HPV. You do NOT want them ti go through what I did when they get older, even if they never get covid, they can still get cancer from HPV. And the incidence of HPV cancer IS rising.

+++++

So, here ends Wildwood55’s commentary. Experience is the greatest teacher, and I hope the lesson here is not lost on you. Take care of yourself. Don’t follow the herd, any herd. Do your due diligence, and ask questions when things aren’t clear to you.

Thanks for reading along. AL

Advertisement

8 thoughts on “A recent comment

  1. Thank you both for sharing this. It is potentially in my future, and I don’t have near enough experience and knowledge to handle it. This helped.

    Like

    • You’re welcome. I think, if I may, that one key takeaway is worth keeping in mind as things develop. You may choose to take this walk alone, but you don’t have to. When the time comes, reach out. There is deep goodness out there, waiting. You’ll know when.

      Like

  2. Hey AL can’t find lift on a wave. Wildwood55s story is a fascinating read on the trials and tribulations of an ongoing medical fracas. It makes me wonder whether the medical profession Really Knows what the are doing, or are they just groping in the dark and we are the Guinea pigs that let them “see” in hindsight. Btw,can’t find lift on a wave. Would like to read it. Keep well mate.

    Like

  3. Oops found lift…. Ignore that. As a sound therapist, I have heard that listening to 432hz tones for 30mins a day can be helpful. There is a Dr Lee Bartel who also talks about 40hz. As we are pure energy manifested in the physical (imo), it would be reasonable to suggest that sound therapy would be an avenue well worth checking out. The medical system is locked into meds and slicing and dicing. I also follow a bloke called Lee Carroll on utub that talks of communicating with ur cells. You need to keep an Open Mind and not just brush him off as being in woo woo land. I find him helpful and at 75yrs of age, I’m prepared to be very open minded.

    Like

  4. Ps. I have been a sound therapist for some time now and would offer anyone reading this a link to an explanation of the power of certain frequencies. The beauty of this is that it costs nothing but your time and could open doors you never knew were there. The link
    naturesoundretreat.com/healing-frequencies/
    I believe from not only my own experience but other posts as well, that this is the medicine of the future and big pharma should be shaking in their boots lol.

    Like

  5. covid shots are ineffective, useless, and make you more susceptible to the very disease they are supposed to prevent, masks are useless, ‘distancing’ makes no sense since covid germs are everywhere. Proof: follow the money. Accept the human condition: everybody dies. Thank your God daily for each new day, be grateful and love one another.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s