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?

This morning was the simulation run for the proton radiation treatment where the physicists and doctors checked their initial measurements and x-rays against their plotted path for the proton beam. I’m happy to say that all went well with only one small adjustment to the measurements. The simulation took about 45 minutes and we were done. Christine, one of the BC Cancer Agency’s technicians was there to help me through the first stage of creating the mask and today’s simulation run. She’s been a part of this program since the beginning and knows all the answers for the questions we’ve asked. Very comforting.

I am prepared now for the actual 4 days of treatment. I’m even sure that I will be able to hold my gaze on the flashing light for up to 90 seconds, the time needed for each beam to be sent into the tumor.

Friday is when treatment starts for real. I may have some ‘sun burning’ or discoloration of the lower eyelid and permanent loss some of eyelashes but no other side effects are anticipated.

It seems that this treatment becomes sort of a show for visiting doctors from other areas of Canada and maybe other countries, as well as trainees of the BC Cancer Agency and other related fields to observe and learn of this type of cancer treatment. Triumf has celebrated their 10th year anniversary in 2005 and is still one of a handful of places that offer proton radiation treatment in the world. Not many places can split an atom to shoot protons into an eye tumor.

Sheila has taken pictures of the Dr. Ma, Christine and two other physicists that managed the simulation today as well as myself fully set up in the chair, mask and all. I will have pictures posted once we return home.

I look forward to returning home and leaving with pleasant memories of the experience and leaving this ocular melanoma behind.

Today was the first day to the Triumf Proton Radiation Center at UBC.

The day started early enough, up at 6:00am so we could get ready and have breakfast before our trip to Triumf began. Luckily, when we arrived at Triumf at 8:20am we were met by Cathy, one of the technologists (if that is her proper designation, I’m not sure) as our taxi pulled up. She happily greeted us and walked us through the entry point (which is rather secure) and down two stories to the actual proton radiation ‘clinic’. I use the word clinic but I’m sure that does not accurately describe the small waiting area and the technology filled offices and areas that comprise the cancer treatment area. Sheila had to wear a radiation dose meter in case she get’s exposed to an abnormal radiation level. Oddly enough it seemed I was the only person not wearing a dose meter.

I was overwhelmed with the systems in place to use protons to fight the cancer I have. Triumf is the center where subatomic particles are sped up, slowed down, broken apart, examined and everything else that physicists do with a machine as big as a hockey arena that shoots things around that you can’t see with your naked eye. As this is the only proton treatment system in Canada it does not seem to have any superfluous decorations to properly designate the specialty treatment available. In all fairness, the staff are wonderful with a mix of technologists, physicists, oncology and ophthalmology doctors in attendance. All for me and my very rare cancer. I was told that in an average year 7 to 12 Canadian patients may be treated for ocular melanoma at Triumf. Again reinforcing the rarity of this cancer and its treatment options. If proton radiation was not available the only other treatment would be to have the eye removed to stop the cancer growth. Thank goodness there is now this option to save the eye and what little vision remains.

I was first given a short tour of the waiting area (really a 12 x 12 foot room) and the other areas where the treatment would take place. It almost seems like a mad scientist’s lab of sorts.

The first step after acquainting me with the equipment was the creation of ‘the mask’.
The mask will hold me immobilized to ensure as little movement as possible as the proton radiation beams are directed at the tumor. I just have to worry about the fractions of movement I am still capable of, as well as blinking and eye movements. Any movement at all will cause the beams to be misdirected and could cause further problems during this treatment, so it’s important to not move! They also have a technologist watching a camera view of my eye, as well as the doctors, so if I do move they can interrupt the beam and start over with no harm being done. The worse part of the mask is the biteplate that is also used. The bite plate is needed to help hold the head in place. So, while all else is happening you have this plate in your mouth also helping to hold you immobilized. The bite plate is made from regular dental bite mold material that is wrapped around a steel plate mounted on a frame that the mask is also mounted onto. Think a horror image from the movie “Saw”.

The chair is a marvel in engineering and precision. Positioning is calculated by the 1/100 of a millimeter on 3 planes. I guess when you’re dealing with sub-atomic particles these measurement amounts are normal. But think of it this way, slice a dime horizontally 1000 times and each slice is a proper measurement for the proton beam. That is the level of proton beam depths required.

The next step was taking x-rays of my eye while immobilized in the chair with the mask on. This is so the physicists can project the correct paths for the beams to be pointed at and the depths needed with extreme precision. This is also why I needed to have the tantalum clips placed around the tumor in my previous surgery. Without the tantalum markers there would be no images in the x-rays to work from as the eye and tumor is simply a fleshy mass in x-rays. The markers provide the doctors and physicists to see the outer edge of the tumor and correctly identify the size and areas of the tumor as they plot the proton beam’s paths.

In all this visit took about 2 ½ hours. The simulation is the next step, on Wednesday. Not only practice for me to be able to stay still and watch blinking lights but so that the doctors and physicists can be certain of the paths they have decided on. I didn’t actually think that this whole procedure would be as comfortable as it is, so I do feel a lot of relief about the next steps.

Back to the hotel by about 11:00am and free time until Wednesday morning. Yeah!

Today is the day after my eye surgery. I have had 4 tantalum clips placed aound the tumor behind my eye. The eye is actauuly turned around and pulled out as much as they can to place the clips. UGH.

I am not nearly as beatup looking as I thought I would be, no bruising but there is a lot of swelling around the eye and eyelids. The eyeball itself has a lot of red, possibly broken or excited blood vessels.

There is discomfort, which I was told to expect. It actually feels like I was hit on the head and that there is a pine needle stuck in my eye.

I have a prescription of 3 different types of eye drops to use. They are to keep infection away and keep the eye moist. One is twice a day the other two are 4 times a day.

I have noticed a little oozing from the eye but not so much that I have to be concerned about. I was told that if there is a lot of discharge I should go to emergency as soon as possible.

I have pictures of how I look but cannot upload them until I am home again, in about 2 weeks. I look a lot better than I thought.

Monday starts the proton radiation treatment. I first go in to have the mask created that will hold me still during the treatment, movement is not allowed! Then I go in for a simulation run so I am prepared for what to expect during the actual treatment and also for the doctors to be able to indentify the area that will be aimed at by finding the clips that were placed in my surgery. A couple of days later the actual treatment begins and goes for 4 days.

Then home. I can’t wait for this part to be over.