My Ocular Melanoma: Rob’s Story

It’s been a tough month but I feel that I’m levelling out now. My sleep has returned and my emotions are stable and straight. No more rollercoasters!

I think the hardest part was not having someone I felt I could talk to, and my wife again came through for me and we have had some deep discussions that have helped me to restore my faith in my life and future.

Also, thanks to all that have emailed me and comments on my posts.

Let’s work towards better days!

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.

Headache free!

Well almost…

Instead of 8 - 12 headaches a day I’m down to one headache every couple of days. the “1-2-3 Program” has worked for me!!

YIPEE

It’s a battle… the biggest difference came when I stopped drinking beer.

Within 2 days I was not waking up with headaches, I was not having rebound headaches… It was like magic.

My whole atttude changed… I have to admit, my personality was less than pleasant, I was horrible to be around… but thta was the migraine in me acting and speaking, not the real me.

I owe Sheila more than gratitude… for putting up with me I cannot understand where she found the power inside herself. I knwo that I would not have been so easily forgiving.

She does love me. Much for foever…

i am blessed…I can hope the recovery persist and i’ll be able to reciprocate the love that I have for her.

Always and forever

Now the backup story:

I was working at one of the largest Western Canada pharmacies/department stores… I was a  simple part-time computer salesman.

TBC

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.

October 22 2007 was the last quarterly checkup that I hope to ever have.

The tumor that has caused my ocular melanoma shows signs of slowing down. During my Monday appointment I had a fluorescein angiogram (http://www.stlukeseye.com/eyeq/FluoresceinAngiogram.asp ) and an ultrasound on my left eye which revealed the possibility that the proton radiation is finally doing its job (12 months later), killing the blood vessels that are keeping the tumor alive. The photos taken during the FA were bright in my right eye (photos taken for comparison) but my left eye hardly even saw the light, never mind the red indicator of where to look for each picture to have a slightly different angle.

Who knows, I might beat this thing yet. At any rate, I am home again after the grueling driving trip and I plan on getting my work down and taking more time to rest.

Having cancer, even just knowing that it’s in my body, is highly stressful. This may be why my body is starting to show effects of neuropathy (http://en.wikipedia.org/wiki/Neuropathy). I can only hope I get better before I get worse.
I am still taking my meds, now at:
(up to) 8 Tramacet a day for my headaches;
1 Gabapentin three times a day (for possible neuropathy);
5 Nortriptyline (10mg each) at bedtime for possible neuropathy;
2 Zopiclone to help me sleep.

Most times now my hands hurt like hell, not so much the feet anymore although they have their painful moments.
The hardest thing I have to battle along with the headaches, are the extremely sore and sensitive fingers. Even typing this out is hard, full of typos. I can’t exactly get my fingers to where I need them on the keyboard too much anymore.

My 1-2-3 Program diet for headaches is going great. I didn’t have any problem with the restaurant food during our trip (Sheila was with me to keep my spirits high), just keep to the fresh food, no extra spices or onions and no fresh bread.
I have added to my collection of recipes, some good ones too. I plan on getting them on this site soon. It’s just hard to keep the fingers going.
Well, that was October 22. Time to rest now. Next checkup is 6 months away, April 2008.