Radiation - the full frontal attack

How many months ago was it that I was worried about a little radiation in the form of chest x-rays, CT scans and mammograms? Then how long before that was I anxious about simple x-rays at the dentist? How many times have I resented being prescribed antibiotics, anti-inflammatories, anti-painful-swollen-infected-whatever pills to help what was ailing me? Or not.

My body is now teaming with health warriors going about their business, wearing their muddy wet combat boots inside, beating the crap out of my cells or out of each other. The theatre, as the battlefield is weirdly or aptly called, goes well beyond the neighbourhoods where my tumours live. Soldiers are duking it out in my toes. Armed amphibious mercenaries are paddling through my blood stream taking aim at anything that moves.

I’m lying on my bed tweeting and hoping my number of followers will go up. What else am I supposed to do?  

I agreed to this course of action. But my opinion on the matter was as informed and useful as what I’d contribute if Obama invited me into the war room to help with strategy. “But are you sure you want to invade?”

So the radiation decision really freaks me out.

I’m in a far better state of mind to think through my options than I was 4 months ago when I was grabbed off the street and thrown into the cancer van. But I can’t help feeling like the choices are false ones, weighted heavily in favour of radiation, placing a massive burden of risk on my risk-adverse shoulders.

I ask the radiologist about research into outcomes, with and without radiation. She makes it clear (very nicely) that treatment opinions are not her domain. Radiating is her thing. She’s in favour of her thing. She tells me to ask my oncologist.

I prepare my argument which goes something like this: If the lymphoma is in my blood, swimming around, waiting for an opportunity to pop out anywhere and grow another hot dog or Barbie dream house couch, or hiking boot (cause anything’s possible, right?) then what’s the point of radiating the spots where the tumours used to be?

I anticipate this will be the beginning of a lengthy back and forth that will equip me to make my you can stuff your radiation decision. I’ll bolster that argument with some research from my friend Tae, then I’ll be armed to win the debate.

Turns out there is no long-term research on outcomes with and without radiation. The Bendamustine/Rituximab chemo combo I’m on is too new.

Statistics indicate (I have to focus hard not to hear bla bla bla, when someone says statistics. I perk up for all the I got diagnosed with lymphoma in 1987, and then it just disappeared stories) Statistics indicate that cancer is more likely to grow back in a spot where it has already been en masse.  

The oncologist’s answer leaves me, in my opinion, choiceless. I’m demoralized but almost convinced. It’s not a debate. It’s a crapshoot.

“You can chose not to go ahead with radiation, BUT…”

Is there more than one answer to that? I don’t even bother to ask how much more (statistically) likely it is to grow back.

“Sure. Go ahead. Invade.”

Comments

Aviva....I don't know how to say this in a delicate manner, given that which you have written, because I am not without empathy but, at least you have the choice of radiation which will shrink the "hotdog" or whatever the shape "it" has now chosen.

I did not have that choice and know, like you, I would be scared at the thought. However, I do have friends who afforded themselves this option and they have been free of problems for some time now. I don't expect that will give comfort because everyone is different but thought it important to let you know.

I can liken your fear to that which I felt before chemo given the cocktail with which I was provided. Opening myself up to receive and embrace poison had me experiencing something for which I don't think there is an accurate descriptor. I accepted the offer of assistance from a Buddhist cousin to accompany me in an effort to focus on allowing its entry without an internal fight. The practise worked and provided tools to assist when next I found myself in that supposedly comfortable chair.

It was long ago that I ceased thinking of myself as a statistic which helped in ridding me of an ever present level of anxiety. I am me: the one with the positive attitude about life and want to live it to the fullest. I refused to allow the big "C" to change that fact. Granted, the anxiety rears its head prior to an appointment with my oncologist but that is the extent of its claim on me.

I tell you this because there are ways to reach out for assistance in shifting a mindset. I acted upon this and then much to my surprise found it became a part of me. No longer did I have to force myself to read or meditate; they became things I wanted to do because I felt so much better as a result.

Aside from reading all the usual books which help in creating such a shift I bring your attention back to a book earlier suggested called,"Picking up the Pieces." It was a great help to me and I can only hope it will assist you on your path to a new normal.

With respect,

J.

Aviva Rubin

Well, let me begin by saying that my wife and I always were naked in front of our children (son and daughter) and thought it to be completely natural. They were naked, we were naked, we bathed together and it was all a lovely bonding time. Interestingly enough my daughter and her significant other see things in the same light and nudity is common in their family too. Of course there are some hilarious stories of my daughter’s significant other forgetting to close the curtains while preparing the twin boys breakfast. The neighbors really never said whether their experience with the naked neighbor was bad or good, just thought it was amusing. Naked is good for children and parents, educational and reassuring for the children who always have a million questions, and rightly so.

The odd thing about living is that we never have any idea of what waits just around the corner for us. We live in a world of physical stuff, pay checks, positive emotional feedback, how we are going to have sex with the “so hot” person in accounting and how wonderful that will be, our new car, vacation, house renovations, etc, and what not. Our shithead boss, the asshole co-workers, and christ is the bar open yet cause I am so done for the day!

Then this “entity” raises its head and our world undergoes an immense change. WTF, who saw this coming, you must have the wrong person, it cannot be me! In my instance it was not cancer, it was a brutal automobile accident. But the specific event is not the focus is it, it is what happens to us that is the focus.

In an instance I went from drunk and horny to half conscious and a paraplegic. No I was not the driver, but it is of little matter one way or another, I had the injuries. I got to “pay the ferryman”.

It was such an education, such enlightenment, over the next 90 days and the following three years I stopped being a dumb 20 year old and became an adult. Yes, in a hospital there is no privacy and every aspect of you and your body and mind are laid bare for the doctors, nurses and associated staff to examine. People asked me how I could stand the hospital and I would respond that it was a very good place to be if you were in need of medical care. They understood my conditions and supported me. Yes there were those medical people that would tell me that I was likely to spend my life in a wheel chair and die early as a result of secondary issues of being a paraplegic. I suppose in retrospect they were just trying to be honest with me. Mentally I chose to disagree with them and harden my resolve to prove them wrong.

I worked three times as hard as anyone else to regain lower body function. It was never an option for me. It just had to happen and I was very motivated to succeed. The hospital staff were outstanding in every way and the harder I worked the harder they pushed and encouraged. You know after a while all the obscene things that you have to endure just kinda fades away and are not an issue anymore.

Mental focus is where it is at. If you can envision it you can make it happen. After 3 months I walked from the hospital. It was never supposed to happen and it was predicted that it could not happen, but it did and I was reexamined a hundred times to find out why. Of course little was I to know that the more difficult portion of my journey was to begin at that point. Difficult as the supporting doctors, nurses, and staff were not there to catch me when things went to shit. Difficult because regular folks don’t understand what I was going through and look at you like you are a mutant. Well fuck you all, I know the folks at the hospital are on my side and behind me and I can stop by for repairs or a visit anytime. And I did just that.

It is a fact of living that bad things happen to good people. Maybe my lot happened to me for a reason, hard to say. What I am sure of is what you do with your lot is critically important. You can make whatever you wish of your lot in life. And therein is what makes us human and allows us to soar in the face of adversity. The human spirit cannot be suppressed by accident or illness, if you so choose.

The articles you are writing are remarkable, don’t stop, put voice to the fears and expose them to daylight and friends. You will find that fears deplore exposure and focus and disintegrate like snails under salt and sun. There is such empowerment in speaking them out loud. Such therapy such healing power!

Yes the soul soaring delights of a wonderful large smelly bowel movement and in the toilette too. A wondrous occasion to be sure. So completely and absolutely ignored by others that do not have challenges. And to some silly people a BM is seen as an aggravation. Oh bother, I have to go poop.

Ah yes, your vagina hot-dog, or my diverticulum on the underside of my penis. When repaired I had a lovely stitching job and two huge bruises on each side of my cock where the operating room attendant hung on to it and stretched it as far as it would go while the surgeon stitched. What can you say about such things? Well I chose to say “nice job on the stitching” and chuckled about some nurse telling her friends about stretching this guy’s dick out for the doctor. The event can depress you or empower you, your choice.

Got a lump around my cheekbone, well dandy, needed a few wrinkles removed and tightened up anyway, so peel my face off and “git er done” and we will move on.

Let me leave you with this thought. An associate in Technology that I worked with on a nasty system problem that caused us all a lot of grief used to refer to these life challenges as “part of the rich fabric of living”. He is correct, and so is what we do with these challenges.

Ed

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