Hopeful news!

The long wait is over. I got a phone call this afternoon from the Oncology Supervisor managing my case. My genetic test results say that my tumor is Class 1B. This is hopeful news, giving me a fairly good prognosis.

Just before the plaque radiation was inserted, a fine needle biopsy was done to extract cells to be sent to a biosciences lab for genomic testing. The gene expression profile test predicts the five-year metastatic risk for ocular melanoma patients.
The test reports these tumor classes:
Class 1A: Low risk, with a 2% chance of the eye cancer spreading over the next five years;
Class 1B: Intermediate risk, with a 21% chance of metastasis within five years;

Class 2: High risk, with 72% odds of metastasis over five years.

Even better, I am told that there is only a 7% chance of metastasis within three years.

What happens now?
 - I will be referred to a medical oncologist, so that we can establish a relationship, should the time come when tumors grow in other body parts, particularly the liver, lungs and brain.
- My ocular oncologist will monitor the primary eye tumor for the next two years to make sure it is shrinking and not growing.
- I will most likely have MRI's of my liver and CT scans of my lungs every six months, as well as blood testing. We haven't set up the surveillance schedule yet, but this is the recommended protocol.

How Am I Feeling?
I am so relieved! I feel like I can go live the best life I know how, striving for a balance of physical well-being, creative activity that stimulates and nourishes me, and spiritual awareness and practices that engage and embrace the gift of life I've been given.

The eye itself is recovering steadily. I have blurry patches in my vision that are improving, and I can function quite well in my daily activities. I can read and drive. I believe I will regain normal sight in the months ahead.

The weeks of waiting for treatment and test results after the surgeries gave me time to dig deep and face my fears, time to clarify what is really important, and time to be grateful for the adventures and experiences I have had into my seventh decade, the friends I've made, the family we've created. 

The healing energy I get from all of you has no doubt helped create and sustain this hopeful state. Thank you for everything you do to walk this path with me. I know I am not alone, and everything is going to be okay.

Post-Plaque, Week One

Although Becca says my eye looks "like hamburger", it's working. There is no more double vision, and I am able to get the two eyes to focus together most of the time. My eye is itchy from the dissolving stitches. 

An invaluable source of information is Facebook support groups specific to OM patients and our friends and family. We ask questions, give and get answers, and share our experience, strength, and hope. Through one of these, I contacted a woman who lives just three blocks away! The odds of that are astronomical. She walked over, and we talked for 1 1/2 hours about the ups and downs, resources, treatments, and ways to deal with this horrible disease that has altered the course of our lives. She has no sight in her left eye. OM's aggressive metastatic nature manifested itself  nine years after brachytherapy, taking 50% of her liver. Four years after that, it formed lesions in her brain. And yet, this resilient woman is living a full, active life today, through many targeted interventions.
No one knows if this will happen to me also, but I am encouraged that there is hope if it comes to that. There is no cure, but the science is developing to prolong life.

"Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today."  ~ Thich Nhat Hanh

Post-Plaque, Day One

Yesterday, the gold plaque was taken out in surgery, and the eye muscle reattached. Let the healing begin!
 This morning I woke up and uncovered the eye for the first time. I slowly try to raise the swollen lid. Whoaaa.....double, triple, quadruple vision. You know how they do that with the camera in movie dream sequences or acid trips? Yeah, like that. I reach for my cup of coffee but which one is real?  This visual disturbance may last for a week or two, maybe more.
I am relieved to see that there are no dead spots in my blurry field of vision, since the optic nerve isn't affected.

Treating the tumor with radiation does not result in immediate visible changes to it.  Once the eye and surrounding tissues have healed, I will go back to my ocular oncologist in 3 month intervals to see if the tumor is shrinking. 

This radiation treatment can never be repeated. It is too destructive. This is my best and only shot at disrupting the cancerous cells ability to reproduce and metastasize.

I've been asked - what about chemo? OM  does not respond to standard chemotherapy drugs. There are no systemic treatments available for this rare disease.

I am enveloped by all your prayers and healing thoughts, and soak them in as nourishment for my spirit. Thank you all.

Ticking off the Hours and Days

   Goldeneye (my pirate name) is counting down the minutes, hours, and days while the powerful radioactive isotopes do their job. Tonight I will be halfway through the treatment. 
   My eye is very irritated at best, and furious at the invasion sometimes. The eye muscle to open my lid has been cut, and the eyeball rolled upwards. It will be reattached when the plaque is taken out Wednesday. If I pull the lid open and peek out, it looks like what you would see in a funhouse mirror.
   I am passing the time with music, audiobooks, and Netflix. I'm so grateful to be able to come home between surgeries. Other patients are often kept in the hospital, or have to stay in a hotel because there are no ocular oncologists in their region.
  Your encouraging messages, cards and calls are keeping the demons of fear at bay. I can't tell you enough what a difference you are making.

P.S. For those that put in their email address for a subscription and didn't get it - look for a message from Feedburner. It may be in your Junk mail folder. It asks for you to verify that you requested it, and you need to click Yes.

Eye Am Radioactive!

No, this isn't some bizarre Halloween costume.  My first surgery was done this morning, plaque brachytherapy.

I am semi-isolated. My kitties and grandchildren cannot be in the same room as me, and anyone else has to stay six feet away. I wear a lead shield over the eye all the time except when I am alone.








This bracelet I am wearing identifies the iodine-125 radioactive material and exposure rate. The I-125 seeds are embedded in the plaque with silicone glue and the plaque is sewn on my eye covering the tumor, delivering a large amount of radiation directly to it, while minimizing the damage to the healthy surrounding areas.

This is the plaque that is sewn in my eye until Wednesday.

Eye Exams are Important!

I am sharing my story publicly because I want to bring awareness to this silent killer. If you are like me, you never even heard of ocular melanoma before. 

My tumor was first detected as part of a routine eye exam, at Visionworks in Bel Mar, where I have gone for a few years.  Dr. Katie Sider used a non-dilating camera system called Optomap. The ultra-wide digital retinal imaging system captures more than 80% of your retina in one panoramic image. This image enhances your eye doctor's ability to detect even the earliest sign of disease that appears on your retina. She compared the image with one I had taken two years ago, and immediately referred me to a retina specialist.

I urge every person of every age to get an annual eye exam with dilation and/or Optomap from an ophthalmologist or optometrist to see deep inside the eye. Even if you don't need glasses, you need a thorough eye exam by an ophthamologist. Make an annual eye exam a regular habit, just like a dental visit, a mammogram, or a physical. It could save your life.

Six in A Million

Six in a million people per year. I am now one of these, diagnosed with ocular melanoma (OM). This is a very rare, aggressive cancer. 

I am in the care of a highly regarded specialist, an ocular oncologist at Porter Hospital, Dr. Peter Hovland. There are only two specialists in Colorado. His diagnosis is that I have a medium-sized choroidal melanoma in my left eye. 

We agreed that the best treatment is to have radiation in my eye, called plaque brachytherapy. It requires two surgeries. The first to sew a small gold disc containing radioactive seeds into my eye, will be done on Friday, November 2. I will come home, with a lead shield over my eye.  On November 7, I will go back to have it removed. I don't expect I will lose vision right away, but there are often long-term complications from exposure to radiation. 

At the time of insertion, they will do a biopsy. This will be used for genetic testing. They will tell me if the cancer is Class 1 or Class 2. Class 1 has a low risk of metastases (spreading to other organs) and Class 2 - high risk. There will be different schedules of surveillance depending on the results. I won't know the genetic results until mid-December. 

I had a PET/ CT scan of my entire body, and it shows no detectable tumors that have metastasized. There is about a 50% chance of it spreading in the next 10 years. The cancer most commonly metastasizes to the liver or lungs first.

I will be monitored by CT scans, MRI's, blood tests and X-rays for the rest of my life. They will begin measurements to see if the tumor has shrunk about 3 months after the surgery. 

Skin melanoma and ocular melanoma are distinct conditions which share the same name but are biologically and genetically very different diseases. Although there have been advances in skin melanoma treatments, there are no recent developments that have shown any significant improvement for ocular (or uveal) melanoma. There is more detailed information in this link----> OM

I am at peace that I am getting the best care available, and I have a great support network of family and friends. Thank you all.