Side effects may include…

/ Dennis A. Gray / Leave a comment

It’s a strange thing when you are doing well means you aren’t doing any worse than average. I had my third review with the radio-oncologist the other day and he tells me he’s pleased with my progress. I suppose I have to take that at face value, but it’s hard when you realize that his standard is based on how bad most cancer patients feel at this stage. Since most people feel the same as I do or worse, he’s pleased because I’m not feeling worse than I am. My pain levels are increasing “pretty much on schedule” and he’s content to continue “farting around with various meds” until we find the combination that manages my pain the best.

I know that it’s my frustration talking but it really is hard to endure some days. I never truly appreciated how small changes in my life could make such a big difference.  I haven’t talked much about about the side-effects of the radiation treatment, so now seems like as good a time as any.

The primary target of the radiation treatment is my throat, since that’s where the tumor was located in what was my right tonsil. However, since the cancer cells that originally blew the whistle were in a cyst attached to a lymph node basically everything from the Adam’s apple up to my earlobes is being bombarded to one degree or another.

Most noticeable is the area at the back of my throat, the traditional ‘I have a sore throat due to cold’ location; although in what can only be described as the biggest pain in the neck since  the guillotine, nothing that would traditionally sooth a sore throat can be used in this case, as all of the traditional remedies will actually aggravate the condition. So no cough syrups, lozenges, citrus based juices, or dairy (yes that means ice cream).

What this all boils down to is swallowing hurts – all the time. Imagine the mother of all strep throat cases and there’s nothing to take for it except Tylenol3, in liquid form no less as liquids are a little easier to swallow than solids. However, the Tylenol elixir stopped working about a week ago and now I’m on another liquid cocktail of various pain medications. Fortunately, it can be mixed with juice so it tastes a little better (I’m using mango) but that’s really a moot point because….

Everything tastes like crap!

Actually everything tastes like tofu on wet cardboard. You see, the radiation has shut down both of my saliva glands, which means I suffer from a very dry mouth. Your taste buds require saliva to function properly, so now, due to that and the radiation thing nothing, and I mean NOTHING tastes the way it used to. Ice cream and all other dairy taste like paste, bread tastes like tofu, potatoes taste kinda like sucking on a wool blanket, you get the idea.  The only thing that tastes normal are a few spices so right now I’m loading up on cumin and oregano just so there is a flavour of some kind.

Dr. Wright assures me that after the radiation treatments stop my saliva glands will heal and return to function, but never back to 100% so while flavour will return things will never taste quite the same. I will admit to a certain curiosity as to just what this implies. Will I suddenly like lentils? Will chocolate lose it’s appeal? Who knows?  A friend who had this same situation had to have most of his tongue removed, taste buds included, and now just eats to refuel as there are no tastes left to him at all.

The dry mouth also has affected other things. I’m drinking a ton of fluids (4 liters + a day) to compensate and there is a special mouthwash that is a concoction of the good doctor himself that helps a great deal, but no fluid except saliva can replace saliva and so there are still things with which one must deal.

My dentures not fitting or tasting right is one. A few weeks ago they felt okay and tasted of nothing. Now they float a lot more and have a definite flavour that occasionally triggers my gag reflex. Lots of fun.

Spontaneous coughing is another one. Although that could be a virus that I’ve picked up on top of everything else, because the radiation has also compromised my immune system. My boss called me and told me to stay away from work today because he has something I don’t need to catch. I wasn’t about to argue.

The dry mouth, non functioning taste buds, and the hurts-to-swallow thing have left me with little or no enthusiasm for eating; which is bad because the radiation is burning up my energy levels which come from the good calories not the fat ones so actually I should be eating more than usual. I’ve lost 10 lbs since I started and that’s about the limit. They tell me I must gain some weight this week. Cue the protein supplements.

The extra fluids are of course giving my kidneys and bladder more exercise than they’ve seen since my college days. (Actually I didn’t go to college but my girl friends did so I went to a lot of parties.) This means a change in habits as I must now never, ever, bypass the opportunity to visit the loo.  Even more fun I must say.

Finally; dry mouth, spontaneous coughing, perpetual sore throat and a tripling of the need to pee do not combine to make sleeping an easy thing to do. Especially since I need to sleep more to compensate for the radiation sapping my energy levels. Cue to sub-lingual lorazopam 1 mg. under the tongue before bed and while I do wake up three times a night to visit the room next door, I do sleep between visits. Thank You!

So, if I seem a little agitated from time to time folks, you now know the reasons why. Like most guys, I’m pushing myself too much and d0 need to rest more, but for the most part I seem to be handling things fairly well.  But that’s only because I’m getting a ton of support. At church, at work, on the Internet and of course from my own dear wife Roberta, the emotional, spiritual, and physical support has been amazing. I can’t begin to express my gratitude.

When I feel my lowest in the midst of all this even just knowing how many people are out there praying for me makes a world of difference. I feel like I need to see this through just for them. And believe me I will see this through. I have every intention of participating in the 2011 Ride to Conquer Cancer with a yellow flag attached to my bike designating me a cancer survivor.

Oh wait… there’s one more thing. The radiation has also killed numerous hair follicles on the sides of my face, so the beard that I have traditionally worn for the last 20 years is now toast. Guess I’m going to have to get used to looking at this face… and so will the rest of you.

So thanks everyone! Until next time …  Shalom!

What’s Up Doc?

/ Dennis A. Gray / Leave a comment

Monday was the first of 5 Review Clinic sessions I’ll have with Dr. James Wright, my radiation oncologist. Every Monday for the next 5 weeks (the last 5 weeks of my treatment cycle) I’ll meet with the good doctor and one of the nurses in the Review Clinic to take a look at how my regimen is progressing.

We started off yesterday with a look the CT pictures they took as part of the planing session. They are a series of cross sections of my head inside the mask used in the linear accelerator. Imposed on this in a number of colours, are bands that define which areas of my head will receive what levels of radiation exposure.

The hot zone, not surprisingly, is the location of my former right tonsil, where they found the tumour. They did cut the tumour out when they took my tonsil, but there are an unknown number of microscopic “roots” that are left behind and need to be destroyed by the radiation. This area of my anatomy is a bright yellow colour in all the various scans.

In the red and blue zones are the various lymph nodes located in and around my throat; down each side of the neck, along the upper edge of the clavicle. Since the cyst that disclosed the presence of P16 was in a lymph node, radiating the lymph system makes sense and gets the next highest does based on distance from “ground zero.”

There’s a green line (I think – I have colour blindness issues) that delineates the outer most reach of the treatment. No radiation above the level of my nostrils. Don’t want to irradiate the grey cells at this point. But then in my case, every cell is a Gray cell! lol… (All right. I’ll be good.)

The clavicle forms the lower border. No radiation below that level. Everything in the middle will receive one of about 11 varying degrees of exposure that were detailed on the CT scans.  I was impressed that they could discern all the exposure levels in such detail. Gives you a real feeling that they truly knew what they were doing. That is, until Dr. James Robert Wright made this encouraging, and inspirational statement.

“Yeah…    So…  there it is.  We’ll keep fartin’ around like this for the next five weeks and when it’s all over hopefully we’ll get the results we were looking for.”

Excuse me! You describe this supposedly high-tech, targeted procedure on which I am betting my continued future existence as “farting around” ?? Nice choice of vernacular Doc!

Flatulence references aside however, the good doctor is mostly correct in his assessment. The fact remains that as far as we have come and as much as survival rates have increased, cancer therapy still remains, to varying degrees, something of a crap shoot.

They can take a guy like me, mid-fifties, slightly over-weight, average health, clean removal of the tumour, a ‘species’ of cancer that has the best response rate there is to radiation therapy, and 8 or 9 times everything will work well and you get the results you were hoping for. Then there’s the 10 or 11th guy in the list; all the same parameters, all the same drugs and treatments, and for reasons you and your $100 million cancer clinic have yet to work out, it all goes to hell, the cancer remains firmly entrenched, and the guy dies.

I don’t know if Jim Wright had one of those days last week or not (I was his first appointment on Monday), but I can imagine that after a man like him, who has invested his life in this work, has a case go sour on him it can feel like all he’s doing is “farting around.” We are all prone to feeling ‘useless’ when we do everything right and it still doesn’t work.

However, focusing on the 10th or 11th guy isn’t going to help any unless you’re a research pathologist. For the rest of us we… I need to focus on the other 8 or 9 guys who make it. It’s like Paul says in Philippians:

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. Philippians 4:8 (ESV)

So we continue on. Supported by Dr. Wright (whom I still have complete confidence in) and his amazing medical staff and volunteers at the Juravinski Centre, and by the many of you who are out there praying for Roberta and I. If you are inclined to do so add Dr. James  Robert Wright and his staff to your prayers; they work hard, care much, and need all the support they can get. Besides, he gave me these lovely lorazepam tables that make sleeping through this a hundred times easier.

I know, but before all you amateur pharmacists (and professionals for that matter – Joan) start emailing me the Wikipedia entries, telling me how highly addictive a drug it is, and regale me with all the side effects associated with benzodiazepines (I can Google it too), I am taking it under my doctor’s care and I’m real good at following instructions. So Chill!

But pondering the doctor’s choice of words aside, I seem to be in good shape; tat is, the treatments seem to be progressing as expected. The sore throat, treated with liquid pain killers, the sleeping aids, the general lack of energy and loss of appetite are all textbook symptoms and appear to be right on schedule. So I am hopeful.

Actually today, I am more concerned for my friend Darby than for me. At 10am today (Wed. Dec. 12) she goes in for a hysterectomy to remove a large fibroid she’s been carrying around for some time now. If you’re praying for me, pray for her too, please!

Till next time … Shalom.

PLease Don’t Confuse Me with Facts!

/ Dennis A. Gray / Leave a comment

I subscribe to a number of daily & weekly blogs via Google Reader. It saves me a lot of time and ensures that I don’t miss anything from my favorite writers. This morning I got this from geeksaresexy.com

Why are some Christians so afraid of science.

Why are some Christians so ignorant & afraid of science.

I will never understand why some Christians are A) so incredibly ignorant of basic science and logic, B) so afraid of science they really don’t want to know anything.

Take the above example. First of all let’s look at the original statement of so-called fact.

“Fact – if the earth was 10 ft closer to the sun we would all burn up and if it was 10 ft further we would freeze to death… God is amazing!!”

Yes God is amazing – I’m amazed he doesn’t hurl more thunderbolts when his followers come up with this kind of drivel. Seriously! TEN FEET!!! How can anyone actually believe this? It doesn’t take an astrophysicist to realize that is this were actually true then life on earth would have died off before Adam and Eve got themselves kicked out of The Garden.  Or at best life could not exists outside a narrow band between  10 ft. above and 10 ft. below sea-level.

The first thing they taught us in grade 6 science was the difference between mean distance and average distance and just how much wobbling there is out there when it comes to things like planets and moons and stars and such. One really has to wonder how any educational system more than 10% functional could produce this kind of scientific ignorance.

But the real problem here is not that God-is-awesome-guy can’t comprehend basic physics; it’s his reaction when someone points out the flaw in his logic.

“Okay, thats cool and alll but dont ever comment on my status telling me that i am wrong everrr again. I didnt ask you did i? Answer: NO” [sic]

This is what really bugs me about this post and the entire God vs Science debate (as if God and science have nothing to do with each other). What has happened to the church in the last century to make such a large portion of it so afraid of science? And why is it so many of those who claim to follow one of the gentlest, kindest, most polite people ever (Jesus wasn’t even rude when talking to those who were out to kill him) are such blatantly rude ignoramuses.

This isn’t the first time I have encountered this among God’s people. Back in the Eighties I had a pastor once try to tell me that human beings never, ever under any circumstances lived in caves. That the whole cave-dweller idea was part of the conspiratorial lie that is “evilution” (Yeah – he actually pronounced it that way every single time he said the word).

When I asked him to explain the overwhelming preponderance of evidence that indicated large numbers of human communities lived in caves all over the world, his response was, “Even if it is true, I don’t want to know about it. I prefer my own reality, the facts be damned.” (Exact quote folks. It was so absurd a statement I will never forget it.)

I’ve heard other pastors, elders, evangelists and everyday Christians make similar declarations. “I don’t want to hear the facts. If I’m wrong, I don’t want to know it.” What worries me most is I can only think of one place where this attitude can possibly have come from – insecurity.

That’s right – insecurity! You see, while a number of these people will tell you they hold fast to this position because they are strong in their faith and refuse to buckle under to the lies of science; I think the exact opposite is true.  If your faith is so strong then why must it run away from the facts.

Okay, I know that right now there are a large number of you screaming, “But evolution isn’t a fact – it’s a lie.” First of all – calm down. I’m not talking evolution here – I’m talking science in general. The above example has nothing to do with evolution – it’s a simple matter of math & physics. But even if it was about evolution, why run away from the debate with ridiculous statements like these?

Why can the church not engage in reasonable, intelligent debate instead of meaningless rhetoric that accomplishes nothing other than to shore up the argument that religion is the last retreat of the ignorant and uneducated. It just adds fuel to the fire; it doesn’t solve anything.

I’m really at a loss to understand where this recent fear of science comes from and belive me, it is recent.  As I’ve pointed out in earlier post regarding science fiction, such was not always the case. In previous centuries when science revealed new information about how the earth was made and how nature functions the response of many of these believing scientists was to marvel at the intricacy of God’s creation. In their journals and letters they revel in what they regarded as proof of an intellegence far beyond imagining being at the heart of the universe.

Their faith was not challenged. They didn’t cease to believe. They instead looked at the facts before them, looked at the Word revealed to them and studied to understand how the two come together. When they failed to be able to reconcile them it was not an indication that either science or faith were wrong, but rather an admission that we still need to study harder before understanding could be realized.

When did we stop doing this? When did it become acceptible to check your brain at the door before entering the church?  That’s not to say that there isn’t a good deal of dogmatic ignorance on the side of science as well, there is.  But I not being a scientist I can’t speak to that.

But I feel I can speak to the church, and once again I come back to the question of insecurity. I believe my faith is strong because there is nothing science can reveal to me about how the universe works that will shake it. And I don’t need to run away from it. I want to know how the universe spins. I want to know the world that God created because it all reveals to me something about who God is.

Sometimes it does challenge my understanding of exactly who God is, but never my firm belief that God exists. I harbour no pretentions that I fully understand all there is to know about God or the universe He created. My theology, like everything else about me is a work in progress, a constant state of being and becoming that will never be a stagnant pool but always a flowing river. The shape of it will change with each new turn, each eddy and tributary along the way. Some of the changes will happen because of what I read in the Word, some because of what I read in the earth, but through it all God remains the same.

If your faith avoids rather than faces the challenges that come along, how can growth ever happen?

Shalom…

Now the Fun Begins

/ Dennis A. Gray / Leave a comment

Well, it was only a matter of time but I was hoping it might take a little longer. The side effects of the radiation are starting to make themselves known.

For the last two days I’ve had this annoying little tickle in the back of my throat. It not painful yet but it does feel like I constantly have to clear my throat. The problem is, if I cough or try to clear my throat it will ultimately only make matters worse. Solution – Drink More Fluids.

I feel like my bladder is an overworked reservoir already. I’ve been drinking about 2 liters of juice and the equivalent of 3-4 bottles of water each day, but they tell me it should be 5-6 bottles of  water and I can crank up the juices as well. Interestingly, coffee seems to silence the tickle the best and the longest; however, drinking too much coffee has its own issues.

The juice thing is interesting as well because citrus is off-the-table.  Seems that the acid content in citrus juices like orange and lemonade will only add to the irritation. So will alcohol, so alcohol based cough syrups and the like are also a no-no. So, of course, is Mr. Jack Daniels. Now while Jack and I don’t socialize overly regular, he does sing me a lullaby once in a while when I have trouble sleeping. Have to find a new song I guess.

So far Halls lozenges are doing some good, but most of us suck on them between our tongues and the roof of our mouths. With my new dentures however, that’s proving hard to do as the roof of my mouth is now covered in a layer of acrylic. Still a learning curve involved here.

So we are left water-logging my insides and of course continuing with the baking-soda mouth wash and gargle.  There is a new player on the team however.

Many of you are familiar with the antacid Maalox®. Well, in my regimen it will now be double-teaming with a thick clear liquid that goes by the name of Xylocaine® Viscous. It’s a 2% solution of lidocaine hydrochloride, an oral anesthetic. We mix the two 1:1 and while the Xylocaine numbs my throat the Maalox attempts to mask the flavour some and keeps my stomach from rejecting delivery. It tastes slightly better than liquid chalk but does seem to quiet the tickle in my throat for a while.

There’s one other wrinkle as well. It seems that there’s a few issues with the Volunteer Driver Program at the Guelph branch of the Canadian Cancer Society. The people are still the greatest and I am very glad for all their help, but it seems they have lost and will be losing a few drivers, and also they are looking for a new dispatcher. We are still relying on them for  most of my transportation however, I would like to ease their burden a little if I can.

The link below will take you to a copy of my radiation treatment schedule I’ve posted online. Now, I don’t want anyone to go out of their way, but if you are available for about 3 hours during the day and find the idea of driving to Hamilton with me less than tortuous, then please pick one (1) of the dates listed when you can do me the favour of driving me down to the Juravinski Cancer Centre for one of my appointments and let me know by leaving acomment (link at the end of this post) so that I and anyone else reading this knows which dates have been spoken for. Then we’ll only have to trouble the Cancer Society for the one’s you wonderful people can’t help me out on.

Again, the folks at the Canadian Cancer Centre are great and I don’t want you to think for a second that they aren’t. But if I can reduce my need to rely on them by driving down with a friend or two along the way, that would leave their volunteers free to help other people.

So if you’d like to help out, I’d love to spend a little time with you as well. If you can’t or would rather not, no worries. I understand and am glad for the fact that you care enough to even read this. (I’m still astounded at the number of you out there who do.) As I said before, just follow this link and leave a comment on which day you can help.

Link to My Radiation Schedule

Anyway, that’s it for now. I offer you the following quote and leave you to ponder the ramifications for me traveling through any American ports in the near future.

The technology used to detect if vehicles are carrying radioactive material is so sensitive it can tell if a person recently received radiation as part of a medical procedure. Timothy Murphy

Shalom…

One Down – Thirty-four to Go!

/ Dennis A. Gray / 1 Comment

Well, it’s started; the radiation regimen that is.

Today I went down for the first in a series of 35 radiation treatments and, as advertised, it was a very simple and, at this point anyway, painless process.  Well, not entirely painless. The bed they have you lie down on is pretty hard but that’s because a softer surface would allow too much movement and when they are trying to aim a beam of radiation (high energy x-rays I believe) as accurately as possible-movement results in more serious consequences than just a blurry picture.

The drive down was actually rather nice and not just because of the sunny weather.  The Canadian Cancer Society volunteer, Dave (not his real name) is a retired gentleman who has been doing this sort of thing for 8 years. Three times a week (occasionally four if he feels up to it) he drives people with one cancer or another to a variety of medical appointments in Southern Ontario. So far the furthest he has gone is London in one direction and Mississauga in the other.  He refuses to go to Toronto; the traffic there is more than he can handle.  He got started when he mentioned to a friend that he found retirement extremely boring and needed something to do. His friend was already a volunteer and suggested Dave join him.  As I mentioned, that was eight years ago. The friend can no longer drive, but Dave is still going strong.

The depth of Dave’s experience showed best when we hit downtown Hamilton.  Rather than taking the expressway up, for lack of a better term, the back side of the mountain, Dave sped along one back street after another, winding his way through a maze of tree-lined, one way streets miraculously avoiding heavy traffic and arrived at the Juravinski Cancer Centre in a mere 40 minutes.  This was the best time in which I have ever made the trip and it does go to show that if you do something often enough you get very good at it.

At the Centre things went very smoothly.  After a brief wait a charming woman named Kristy led me to a small comfortable room and made sure, first of all, that I was actually Dennis Gray.  When I was there for my orientation they took my picture; she had a copy of it with her and took the time to compare it to me.  Since five days growth of beard hadn’t changed me enough to make me unrecognizable she moved on to the next step.

She  made sure I fully understood what was about to happen, what the side effects of the treatments would be, the recommended ways to deal with them, and what I was going to do with each return trip.  All questions were answered in a pleasant, unhurried manner and repeated in the same manner when needed. It was a very comfortable experience. (See last few Paragraphs of previous post.)

Then after she showed me around a little I changed into a traditional hospital gown (only needed to strip from the waist up which was nice). Then there followed but a brief wait until it was time for me to go in to Machine 10B for my treatment. I had arrived a little early, thanks to Dave so I had time to get in a little reading. Love my Sony eReader.

When the time came Kristy escorted me to Machine 10b and introduced me to the other two treatment technologists. Since I didn’t see much of them (my glasses were off by this point) I can’t seem to remember their names; at least that’s my theory and I’m sticking to it.  But they were all very nice and made me as comfortable as they could on the aforementioned hard bed designed more to keep me immobile than comfortable.  Two quick low-energy x-rays to make sure I was lined up right and then it began.

From the patient’s point of view nothing could be simpler, or more uneventful.  For the next 20 minutes I laid flat on my back, staring straight up at the lights on the ceiling while servo-motors rotated the linear accelerator around me and made slight positional adjustments to the bed I was lying on until I was properly positioned for each of the 9 individual firings. Each firing lasts 20 seconds and is noticeable only by means of a very low volume buzz coming from the direction of the large circular head of the machine.

When the procedure was over (painless this time as I mentioned) I changed back into my shirt and jacket and rejoined Dave in the main lobby. After a quick stop at Tim’s for a double-double we were on our way back to Guelph.

I thanked Dave for his efforts on my behalf when I got home around 5:30, but somehow it hardly seemed adequate. I’ve been thinking about him and his ilk, volunteering the way they do. He picked me up at work, drove me down, waited for me for over an hour, drove me back to the work shop-because in my slight anxiety I forgot my keys, and then drove me home. In all about a three hour slice out of his day.  And this he has done 3 three times a week for the last eight years. They say Guelph is the volunteer capital of Canada. People like Dave are the reason why.  Thanks again Dave.

Speaking of driving; a number of you out there have expressed a willingness, dare I say even a desire, to drive me down for one of my appointments. Well, though it looks like the Cancer Society may have things well in hand, I too would greatly enjoy a chance to spend some time driving with you and getting to know you a little better in the process.  With that end in mind the link below will take you to an online version of my schedule of appointments.

Follow the link and let me know which one (1) appointment for which you positively know you are available to drive me down and drive me home. Keep in mind that each Wednesday they will be giving me an update of my schedule and when they do it’s possible some changes may take place. With new patients coming in all the time occasionally some juggling must take place, so please check back once a week or so.

https://spreadsheets.google.com/ccc?key=0ApI5vq3YTQfNdFgtSVZaZmV3MTZnckoxMC12eVNvdnc&hl=en&authkey=CO73uqYB

Trinty Prayer Shawl

The Prayer Shawl knitted for me by the ladies of Trinity United Church in Guelph

Well, that’s it for this time around. Oh! Except to say thanks once again to my good friend and theatre pal Beth Freeth, her mother, and the folks at Trinity United Church in Guelph, who knitted and prayed over the lovely prayer shawl in the picture at left.  They do this for people who are brought to their attention. They knit the shawls and then pray over them so that the folks who receive them will have a continuing reminder of the warmth of God’s love and the prayers that are going up on their behalf. It’s a marvelous gesture and I will treasure it always.

Gratitude as well to all of you who are praying for me and offering help in other tangible ways. (Great pot roast Margaret!)  I love you all and think of you often.

Till next time.

Shalom.