My Ocular Melanoma: Rob’s Story

This six month checkup has come and gone… with no clear answer as to the state of the cancer that hides behind my eye.

Has the tumor shrunk? Gotten larger?

Are the blood vessels that fed the tumor still working even after the proton radiation treatment?

From this trip there are no answers… nothing positive, nothing negative.

Once again I find my life, my future, in limbo.

There has been pain in my eye, in my head and there is a distinct redness, broken blood vessels, in my eye. If I can I will post a picture…

I am using eye drops as my doctor believes, at this checkup, that the tear ducts in my eye are no longer functioning.

Eye drops, every 2 to 4 hours, is a chore, but it does ease the eye pain I have been feeling lately, over the last few months. Is this the deterioration of my eye that will lead me to losing it? These thoughts race through my head regularly, But enough already.

I will wait, for the, whatever it is, to develop. I have no other choice, do I?

Right now it’s a normal night, but yet it’s full of tension, as far as I am feeling.

My wife and I are packing our suitcase (a large, shared one) in preparation of our traveling to Vancouver tomorrow, for my 6 month checkup on Monday.

It’s hard for me to be prepared for anything these days… my thoughts are askew… it’s hard to maintain a straight mental focus on the job at hand… excluding my jobs, of course.

Any distraction from the reality of having an unknowable cancer within my body is a distraction I will gladly accept.

And Monday will let me know what my future holds… or it won’t.

My last appointment with Dr. Paton well quite well. The tumor has shrunk according to all expectations.

I am a cancer survivor.

I am now to have checkups every 6 months to ensure that the tumor does continue to NOT grow.

Although I should be relieved by this information, I am some reservations. I will have, possibly for the rest of my life, 6 month regular checkups to be certain that the tumor does not start growing again  (which would mean removal of the eye) and also to follow-up that the cancer is not spreading elsewhere.

I feel that my life is being measured in 6 month increments.

And I know that I have to make the most of every 6 months for there could be a wolf at the door.

I love my life, my wife and my kids.

Let this time limitation have a positive affect on my life. Let me not let slip away the things that I could really most enjoy with my wife and kids… yes, a learning experience, a reason to better enjoy life.

If I can follow these instructions to my self, life could get a lot better, for me and my family.

God please grant me the wisdom and grace to make this happen.

A new month is like a celebration, turn the page on the calendar and look back at how far you’ve come.

I am celebrating for the couple of months that have been (almost) 100% headache-free.

I am making progress, with the help of my wife, towards a new future of hope.

I just wish it was as bright as should be promised. I’ll always have the covering cloud of cancer, a cancer that easily metabolizes through the liver and the rest of your body without warning.

I am learning humility; I am learning to be at peace with what I can and cannot do, but to not create false boundaries upon myself; I am learning to better understand the needs of others while preparing those I love for when I am gone (or, hopefully for them to endure me for a long time yet!). I am learning to make promises that I CAN keep and to not break those that I have made so far.

I am learning that I can learn more…

I am now a couple of weeks away from my next 6 month check-up. I have been having some very painful episodes from my left eye (or what is left of it) of varying degrees for the last several, now 9, days. I do not want to lose my eye. I am allowed to be that vain, aren’t I?
I am concerned that my wife, now that she is used to looking up “ocular melanoma” on the internet and has been reading other people’s experiences, that she will also see me as a “cause of concern”. I am scared of her being scared, more that I am of finding out that the cancer has spread or that I am soon to be “not well” soon.

Worrying about her being worried about me has become a full-time task.

I have work to do, in all kinds of areas, personal and professional. We will talk again soon.

Sometimes life seems to be a continuing penance for actions done and not done.
There are unexplained events that seem so unfair yet give strength to people simply because you endure.
But on a personal level is it enough?
 
It’s been more than 18 months since my cancer diagnosis.
 
I am still here.
 
It’s been 14 months, or so, since my cancer treatment.
 
I am still here.
 
And it is a New Year, 2008, full of hope and dreams.

I am surviving well enough these recent days. Cutting off my beer intake has seemed to lessen the number and overall severity of my headaches. Down from a dozen or so a day some lasting 20 minutes, some lasting hours, often including photophobia and audiophobia, to just one or two that are less severe.

The neuropathy seems to be under control using the gabapentin. I still have episodes of my feet and hands tingling with fire, or the feeling of broken shards of glass being pressured into them, but again the number of times in a day this occurs has gone down.

I am looking forward to being a cancer survivor and getting back some control of my life, one-eyed or not.
Forward I move.

This week I had a revelation, of sorts.

I had an appointment with my neurologist and we discussed my current symptoms:

Headaches, dizziness, lack of concentration, tunnel vision, occasional nausea, occasional lack of appetite, tingling and pain in my fingers and hands and my toes and feet.

The neurologist, Dr. Takahashi, introduced me to the book “Heal Your Headache” written by David Bucholtz, MD (http://www.amazon.com/exec/obidos/ASIN/0761127984/robrob8sminimall ).

Within reading the first two chapters this book had identified all my symptoms, and the possible causes of them. Could all of this I have been going through since January be a matter of migraine? Could migraine be the culprit giving me headaches of varying degrees? A variety of illnesses that track back to my threshold for migraine triggers in my daily diet?

Could be!

And it’s definitely worth following up on.

There is a 4 month suggested diet modification that is to eliminate migraine triggers from my daily diet. Caffeine, MSG, nitrites and nitrates, sulfites, citrus fruits, onions and more need to no longer be consumed (don’t forget chocolate!) to affect change in this “1-2-3 Program” diet. At the 4 month stage I may be able to find a difference in my symptoms and move forward from there.

It’s harder to cook for this diet, since so many foods are preservative based, canned, cured, and otherwise processed with the harmful, migraine triggering, elements. It is a challenge.

Additional meal and snack planning is required. But with the support of my wife, Sheila, I believe that this 1-2-3- Program for migraine relief can be accomplished.

I’ll keep you updated.

Medication update:

I’ve been switched from Lyrica toGabapentin (300mg 3 times daily);

Zopiclone (7.5 mg X 2 at bedtime);

PMS-Nortriptyline (10 mg 1 at bedtime).

Today Sheila and I have arrived back from my first 3 month checkup after undergoing the proton radiation treatment.

 Dr. Paton assures me that I am doing fine. There has been no noticeable change in the size of the tumor, which is a good thing. At the 3 month mark it cannot be seen if the tumor is getting smaller, this may happen at the 6- or 9-month follow-up. The good news is that there is no sign that the tumor is larger, which means that the radiation just might have worked.

I am still feeling tired, sometimes with nausea to go with it. My regular doctor assures me this is normal for this to happen, an effect of the radiation.

I will be going again in April for my 6 month follow-up. And looking forward to some positive news as well as better weather.

My name is Robert Lee, and I have Ocular Melanoma.

I am not a specialist, just a survivor of this very rare cancer. On this day I have completed the last of four proton radiation treatments at the TRIUMF Research Facility in Vancouver, BC, Canada.

During my first follow-up appointment (today) with my ocular oncology ophthalmologist Dr. Paton, she suggested a website that will allow other Ocular Melanoma patients to find information concerning this specific type of cancer and this is what I am attempting to do here. Dr. Paton will be providing me with information concerning diagnosis, treatment and other relevant information to help other Canadian patients dealing with this disease, themselves and their families, to better understand OM throughout the coming months (years), to help to find the information they need that is relevant to Canadian patients, their families and concerned individuals.

Please note that the information available here is NOT a substitute for professional advice and should be used for reference only. Please see your specialist!

Personal experience:
My first change in vision was March 28 2003. Like a light switch being turned on the vision in my left eye became blurry. As soon as possible I went to see my regular eye doctor. At the time I already wore glasses for poor vision in my left eye. A couple years earlier I was told by my optometrist that I have a differently shaped left eye that was causing me to have trouble seeing and was causing my headaches, the complaint at the time. He prescribed eye glasses which improved my vision and ended the headaches.
At this time he saw something behind my see and immediately referred me to an ophthalmologist to further investigate this change.

In the course of treatment I have had PDT treatments (Visudyne) and Avastin treatments (both described elsewhere in this website). The final treatment at the time of this writing was Proton Radiation treatments.

I was initially diagnosed with having a type of Age-related Macular Degeneration (AMD). Surprising since I was just over 40 but who am I to say?

Regular specialist follow-ups determined that the profile of the growth was actually a tumor, a much rarer form of cancer, Ocular Melanoma.

The treatments I have had are documented elsewhere in this website.

Things to look for:
Any change in your vision should be investigated by the proper specialist.

If no immediate determination can be made as to what is happening to your eye/vision be sure to have regular follow-up appointments scheduled. The eye is still very much a mystery and OM is not something that biopsies are performed for. You should have eye tests, images and pictures taken regularly, every 3 months, six months or annually as your specialist deems necessary. Ultrasounds. Maybe even Angiograms to help your ophthalmologist determine the right course of diagnosis and treatment. The rareness of this type of cancer (7.5 people out of one million is the common estimate for how many people will be diagnosed with this type of cancer annually), leads it to not be readily identified. In Canada more people will win second prize in major lotteries than be diagnosed with OM annually.

Often there is no outward sign of this type of tumor other than the patient experiencing a sudden change in vision. Or any type of eye tumor, for that matter.
Again: If your vision suddenly changes get your eyes looked at by a specialist.