Watch out for DAVFs!! Sneaky things...Yes, it means I had a stroke!!

After all my successes with the cancer, a DAVF snuck up on me and ruptured!  A 'bleed on the brain' is no fun at all.  At least it hasn't left any permanent or significant damage.... or at least it hasn't been identified as such yet.  We're still assessing the damage and the implications.

Okay, so what the heck am I talking about?

On November 5, 2013, weeks away from the six anniversary of the surgical intervention for my cancer, I had a STROKE that was due to a spontaneous (non-traumatic) right temporal-parietal lobe haemorrhage.  They did a 'fix' through a post right arteriovenous fistula embolization to prevent recurrent haemorrhage.  They performed this procedure within two days.

Time for all you folks who have had work done on their heads and necks to get checked for DAVFs.  Ya, I know, just one more thing to be worried about.

Anniversaries...

Four years ago yesterday a surgical team specializing in 'head and neck' exorcised (love that word!) a demonic stage 4 squamous cell carcinoma from my right tonsil. They executed a mandibular swing to get at all the nasty bits and effect a clean neck dissection, removed a piece of the tongue, and all the lymph nodes. A 'forearm flap' technique was used to reconstruct the back of my throat and tongue, including the use of the radial artery from my left arm to replace the vascular plumbing affected by the tumour. And while they had everything disassembled, they moved salvia glands from the right quandrant to the lower left in an effort to protect them from the yet-to-be-administered radiation treatments. And today, four years on, I have so little to complain about that it just sounds like whining.

Okay, so I admit to wearing high collars, and loud ties to distract from the visible scarring, which is minimal. Vanity has me sporting a beard to hide what I consider to be the worst of them, not that I really need much of an excuse to keep my beard. Close examination of my neck shows what appears to be the beginnings of a goiter, but that just so happens to be where those salvia glands were tucked out of harm's way; my saliva is very good. No 'dry mouth syndrome' here. The autonomic responses of the tongue are not what they used to be; it doesn't effectively 'sweep' debris from my teeth as I eat. And because of that wee reduction in functionality of the tongue, and the somewhat tighter throat, I do need additional liquids to help flush things down the slightly constricted pipes. However, I can taste...really taste. And I can talk...something which I seem to do incessantly some days. As part of my work, I occasionally present a marathon 3 day seminar; my throat and voice haven't failed me yet. My teeth are in great shape; I sacrificed only one to the mandibular swing.

So when I read through my correspondance with other throat cancer survivors and try to comprehend what some went through, and are going through, I realize that I have nothing to complain about. Absolutely nothing.

I consider myself to be very fortunate. When this damned cancer and I had our collision, I was in the right place with the right specialists close at hand. Thanks to Doctor Williams and the surgical team who have chosen to work and do their research at the University of Alberta Hospital and the Cross Cancer Institute in Edmonton, Alberta.

And I am especially grateful to the woman I married who refused to let me ignore the symptoms...

Neglect turns into...

Not sure how it happened, the actual cause, but I recently came down with a really ugly bout of 'thrush'...the oral equivalent of candidiasis.  It was treated with a Nystatin suspension as a rinse (one of the important ingredients in Akabutu's Mouthwash), and seemed to go away after two weeks.  I hadn't used the rinse for three days when I noticed last night that the coating on my tongue is back, and small clusters of the nefarious yeast have sprung up at the back of my throat.

Damn.

Ya, I know I've neglected this blog for 9 months now... I guess I owe some major updates, don't I?  I'll get right on that... watch for new entries...

Three years since surgery, and feeling 'survivor's guilt'...

Over the weekend..well, last Friday to be more precise, I hit the 3rd anniversary of my cancer surgery.  Everything seems to be going well. Of course there are the usual bits and pieces that keep cropping up; some trouble swallowing, an unruly tongue, the slight bulge in my neck where the saliva glands were repositioned to, the white ‘flash’ on the other side of my neck that reminds me of the vascular rebuild (and possibly the cause of recent exertion headaches), the constant tightness in the right side shoulder muscles and the damned scars, too faint to be demonstrably outrageous, but not faint enough not to be slightly self conscious about. But on balance, I’m quite ecstatic with the results, and really have so little to complain about… So many who have gone through similar treatments I read of, or who I communicate with have not had the same success with the surgical option. Some lost more tissue, more bone. Some even lost their voice, the cancer silencing them. Me? Hell, I’m in fabulous shape.



I was subtly disappointed that I needed to remind my family of the date, but I didn’t push it because I find that I am a bit reluctant to celebrate the anniversary this time around. I suspect that I am suffering from ‘survivor’s guilt’. Perhaps it is about the survivors that I stay in touch with who aren’t doing quite so well. Perhaps it is because Larry Yachimec died from lung cancer just months ago. Michael Becker’s cancer has been deemed ‘terminal’, and no one really knows how long he will be with us. I am so fortunate to have walked away from the impact of this stage 4 carcinoma collision, but can’t bring myself to celebrate…

More on Akabutu's Mouthwash

An anonymous reader of my blog has provided a few more details on the composition of Akabutu's Mouthwash:

For a 240 ml Bottle:

Glycerin
Cortef 10 mg (cortesone)
Ratio-Nystatin susp 100,00 U/ML (anti fungal)
PMS-Lidocaine viscous 2% 100ml
Lens Plus 360ml (saline solution) which contains salt 0.9%

I hope that is helpful to some of you. Please note, however, that I have no real idea of the validity of this recipe and that using it is at your own risk. I also must caution you that I also have no understanding of copyright/patent infringements that its use may cause.

Update on the vague reference to 'thrombosis'...

As you may recall from my entry from March, the radiologist who screened my head and neck CT ordered by Dr. Williams included a brief note that said: "A tiny/small soft tissue focus is present in the region of the right piriform sinus inferiorly. Absent contrast filling is noted within the transverse and sigmoid dural venous sinuses extending into the proximal internal jugular vein on the right side compatible with thrombosis."  Now, as we all know (I didn't until I asked the Doctor, but we'll just pretend that you already know) a thrombosis is basically a blood clot.  If you'll remember the rest of the previous post, I had tried to leverage the skeptical nature of my G.P., Dr. Randy Naiker... and it appears that I was successful.

Dr. Naiker had a conversation with Dr. Williams.  Dr. Williams then had one of his vascular contacts review the films... He called this morning and left a message on our answering machine indicating that the concensus is that there is no thrombosis.  He did go on to say something to the effect that it is fairly common (30%) in this type of surgery that a thrombosis of the vein draining the head may occur.  He assured us that we (meaning me) have nothing to worry about.  Everything is as it should be.

November of 2013 proves that the analysis in this previous paragraph turns out to be wrong.  I suffered a stroke on November 5, 2013 as a result of a DAVF letting go.  what's a DAVF?  Look at the stroke entries in the blog, but essentially it is what this post describes and was intended to find and deal with in advance.