My Ocular Melanoma: Rob’s Story

It is now October.

I can’t believe that it’s been so long since my last post.

I have had a period of great improvements in my health, great stabilization in the pain management and headache issues that have plagued me over the years.

But I feel that I am now in a downward spiral.

The pain that has struck my hands and feet is now moving permanently into my shins and wrists. I notice the pain more often when I have not been taking my Gabapentin on time. A couple of hours late and it takes days to get my body back to the pain-free state it was in weeks ago.

The stress of maintaining a level head, of being able to think clearly, of moving my fingers on the keyboard accurately has all but left me. (Thank goodness for spell check!)

The days are shorter, getting shorter every day, we have snow today which involves a whole new skill-set of house maintenance that I am not sure I will be able to accomplish anymore. My head often feels like an empty balloon, unable to process a string of thoughts, easily distracted by nothing, just an empty thought not tied to anything directly I am doing. What level of transformation am I now in?

The interview that I started with Talib Qizilbasb in June 2008 has been published in this month’s edition of “Optical Prism” the optician’s professional magazine for Canada.

My hope is that at least one person, whether doctor or soon-to-be-patient, has the opportunity to learn from my experiences and not have to go through which has so significantly changed life.

It is now October, the 11th and it’s snowing, hard enough to say, and if it continues we’ll be shovelling the driveway tomorrow.
My energy levels, are no longer what they were. My thoughts are frazzled and strained. While I appreciate outside involvement in my life (I have restarted a part time job I had to give up years ago) I find that the after affects are overwhelming. Hopefully this is simply an adjustment period.

Please continue joining this blog and adding your comments, without them I don’t know what I can count on next.

November is my latest checkup date. After so many months from April what will I have to report?

The left eye although there is very limited periferal vision, even that is diminishing. The wide eye straight ahead vision area (central vision) is getting worse by far. It used to be a waterfall effect that just obscured how my central vision was being blocked from seeing, now it’s dark spots that are the vision eliminators.

I am scared about this change in my sight. I can live with the obscrure bright areas but now with those vision areas being darker, much darker… I am worried. This type of change cannot be good.

In a month I will find out what the next step is…. And I will not worry until then.
My friends, stay in touch, I look forward to your support.
RL

This is how my eye looks 4 weeks after the proton radiation therapy.

The lower eyelid is very sore. I am using a cream to ease the pain and discomfort of the “sunburn effect” from the ratiation. This is an after effect that I was warned would happen. It feels just like a severe sunburn. The skin has already stared blistering, which makes it hard to concentrate, sleep, many things of a normal life you’d do but can’t if you’re badly sunburned. But it’ll get better.

You can see how the areas of my visible right eye (during treatment, because of the loss of central vision in my left eye, the ‘tracking monitor’ was watching my right eye instead of my left eye that has the tumor) are marked on the monitor.

Should I lose the flashing light that I must train my eye at to be certain the proton beam is directed correctly, the doctors will immediately put a stop to the beam so as to not cause additional damage to my eye. It’s only the tumor we want, not the whole eye.

A patient not being able to maintain his aimed eye line during the treatment increases his chances of losing the eye. Fully 1/3 of proton radiation treatment patients have to have the treated eye removed. This is usually due to the tumor killing the eye before the radiation kills the tumor, I believe. Hey, staring at a flashing light at the edge of your vision for 90 seconds seems easy at first…. but it isn’t.

The proton radiation treatments are monitored from a short distance. No one wants to be in the same room as the patient (for safety and health reasons) during the actual radiation treatment.

The patient (me) is watched for panic in the left monitor (as well I have a panic button in my hand once I am positioned into place and the mask is set) and in the right monitor my right pupil is seen enlarged. Should my vision move outside of the allowed areas, as seen from the marks on the pupil monitor, the treatment will be immediately stopped so as not to send the proton beams to an area that is not the tumor.

Rob getting setup as seen in one of the monitors that are used to watch the proton radiation procedure by the doctors, assistants, physicists and visitors to the TRIUMF center.

It’s much harder than it looks…. Christine (from the BC Cancer Agency) Has to make sure that I’m correctly positioned while in the chair. Measurements are to the 1/1000 of a milimeter, that’s how exact the proton radiation is directed at the tumor behind my left eye.

Once the mask is made they have to put it to use. They use it by fitting it on your face having you clamp down on a molded bite plate and there you are, anchored in place. The chair is a technological marvel, as detailed elsewhere.

This is how my eyes looked 4 days after the surgery when four markers were placed around the tumor that is behind my left eye (right side as you view). Not too bad, eh?