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
Wednesday, November 14, 2018
Thursday, November 8, 2018
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.
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.
Sunday, November 4, 2018
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.
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.
Friday, November 2, 2018
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.
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.
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