My Ocular Melanoma: Rob’s Story

Well, winter, although not officially due to start until Dec 21, has arrived in the first full blown snowfall for Logan Lake. Snow that did not melt away until late in the afternoon.

And so my mood goes. I have had my MRI, I have had my prescriptions upped, and yet, I am still having periods of great pain in my hands and feet, although the increase in Nortriptyline may be the reason why the times of pain are of lessened periods and duration.

At least my headaches have gotten better, not as many although I am still waking up with a headache. I am working on changing my diet to combat the low migraine threshold that may be a factor in my headaches. It’s not too strict a diet and I haven’t fallen off or cheated on it yet. More than 2 weeks of no chocolate, caffeine, preservatives in food and the like. It’s not as hard to follow as I first thought it would be. Thank God for that.

Another two weeks and I’ll be having my next 3 month cancer checkup. A snowy trip to Vancouver, I’m sure.

Meds currently taking:

Gabapentin 300mg – 3 times a day

Zopiclone 7.5 mg – 2 at bedtime

Nortriptyline 10mg – 3 at bedtime

Tramacet 37.5 mg – 1 to 2 tablets maximum 4 times a day

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).

I’d like to say that the last 9 months (after proton radiation treatment) have been easy. But it hasn’t even been an uphill battle.

My body is stressed enough that I can’t sleep, have constant headaches… and still can barely see out of my left eye. MY feet hurt all the time, and my hands sometimes feel like raw flesh.

The good news, of course, is that the cancer hasn’t gotten any worse, not that anyone is aware of anyways.

July 23 was my 9 month follow-up. I am doing well according to Dr. Paton. Not much has changed in the size, shape or placement of the tumor since my stellar 6 month checkup when a smidge of shrinkage was observed.

At least nothing is getting worse with my eye. I’m almost past the point of when they would recommend removing it. I think that’s at the 2 year mark depending on a host of symptoms that I will not bore you with… yet.

I think the biggest battle I have will be with myself, maintaining my sanity.

But life does continue, no matter how much you’d like it to slow down and stay at a different time.

RL.

Jeepers.
I can’t believe that I am now a 1 year survivor of cancer.
It was July 4 2006 that I was finally diagnosed with ocular melanoma. After 3 years and a few months of “we don’t know”.

We are off to Vancouver on Sunday for my next 3 month checkup.
Not looking forward to the ultrasound.
Not looking forward to the results either.
Although Dr. Paton tells me that the tumor is shrinking, really, that’s the least of my worries.
I’m worried about the tumor spreading the cancer cells throughout my body.
Liver, lungs, etc.
In October, the next 3 month checkup, I think I’m due for a CAT scan or at least an ultrasound of my insides.

Call me “continually scared”.

But life goes on and I’m living it.
We’ve moved to a quiet community where we can feel safe with the kids, like the neighborhood and get back to less worries of life’s commitments.
And there is a pub a block away.
Just have to check if it’s close enough for me to connect wirelessly to my computer system.
“Hey, mind he noise I’m working here!” as I sit in the pub writing my articles.
Life can be great.

That’s all for now. See you after my July 23 checkup.

The good, of course, is the move we are about to make is a big one. Kamloops to Logan Lake. 80,000+ population center to 3,000 unique individuals sharing a crossroads off the highway, in between other small communities. The packing up is all on schedule. We are ready and excited! 

I, on the other had are continuing to be struck by confounding maladies. I am off the Tramacet, temporarily, taking only Lyrica for my feet pain (which is now affecting my hands)and Zopiclone, to get some sleep. My short-term memory is slipping. I can feel myself lost at times, thoughts arriving in my head that have nothing to do with the previous thought or the task at hand. Once a creative boon, now a major annoyance of distortion. 

Although I did come up with a thoughtful line today: “You only have now to make friends, later doesn’t come.” 

It was quite hard to hold onto that thought. And, even as I write it, I’m not sure it was the original or not. Maybe the third or fifth mix of the words. Just don’t know. My typing capabilities and speed has been halved recently because of the increased pain in my hands. The hands are now working slower than the eyes that direct them to the keys. TYPO-city is where I live now. Note to Bill Gates: spekll check needs to be improved, a lot. 

On Thursday I have an appointment for a mini-neurological exam. I’ve never been good at health tests, recently. (Small joke.)  Wish me well. 

June has brought a sense of uniformity to my being. Although I am taking a handful of “Tramacet” a day and 2 “Lyrica” a day to maintain my pain-free existence (improved quality of life through pharmaceuticals, says my doctor) I manage to plug along.

I still have the ever-present threat of my head splitting open when I forget to take my Tramacet. The pain in my feet comes at me at all hours, often waking me from my sleep at night.

At the onset of the head pain (on top of the skull, behind the left eye, pain like an axe splitting my head to my jaw) I was scheduled for a CT scan. The results showed nothing other than the tumor and the 4 plaques that are still mounted on the back of my left eye, surrounding the tumor (left over from the proton radiation treatment).

The good news is that still the tumor has shown signs of shrinking. The eye may yet regain some blood vessels and live. I can persevere through this with the continued support of my wife, kids and family.

I am a cancer survivor, God willing.

Today as the final straw for the head pain I’ve been having for the last 10 days or two weeks or so.

A sharp pain through the top left of my head, sometimes feeling that it was freezing the left side of my face right down to my chin.

The pain is similar to a migraine headache but it isn’t one. None of the other migraine symptoms have shown up. Just the pain, loss of balance, lose of concentration. Movements slower because of the balance issue. (Almost fell in the pool the other day!)

Had enough today and saw my family doctor. He prescribed “Tamacet” pain killers. So far so good, but I can still feel the tightness across the left side of my face. And unsteady on my feet.

I’ll have a CT scan in the next week, hopefully nothing will be found.

I’m happy to report that April’s 3 month checkup went surprisingly well. Dr. Paton says that the tunor is visibly shrinking and that in the next 6 to 9 months new blood vessels should start to grow in my eye, helping to regain it’s health.

Other than that, for me the trip was ordinary.

For Sheila, my wife and loving caregiver, she was able to connect to an old schoolmate.

The weather in Vancouver was incredible, one of those days where you know why people live there.

Now it’s just a wait until my next 3 month checkup in July.

This just goes on and on.

Wow, it’s been over a month since I’ve posted anything. Not that I really have anything good to say.

About a week after returning from my first 3 month checkup after the proton radiation treatment I started to feel the effects.

Nausea, headaches, extreme tiredness, lack of concentration, stiff/sore legs and feet.

Mystery illnesses or an aftereffect of the radiation? I don’t know and no one I talk to will commit 100% to that being the cause.

But forward I go. Life does go on whether you want to participate or not. I make the most of the trouble free minutes in each day that I can and remember to take my pain pills and sleeping pills to get me through one day and onto the next.

Wish me well.

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.