Chapter 4: Brachytherapy, and Other Ghoulish Medical Treatments.

My appointment with Dr Fulton had been set for March 30th. I arrived for the appointment and filled out, once again, a multitude of forms. I signed consents for God only knows what.

He seems very young. Everyone seems young to me now. He is probably, forty fivish, maybe even older. He has a boyish face though. He is tall and lean. He looks like he plays golf, but maybe not as much as I credited him with initially.

They rescanned my eye with ultrasound and Dr. Fulton went over the images with me. He reiterated most of what Dr. Reid had already told me but he embellished on some details. First of all, he did think that radiation was an option. Secondly he wanted me to know, in case I had been surfing the internet, (He raised an eyebrow with an accusing look.) that doing radiation therapy would not increase the chances of metastasis.

I had seen a couple of articles that suggested that disturbing the tumor with radiation could in fact “seed” the tumor to other areas of the body. Yes, it was on Dr. Google and I shouldn’t have paid any attention to it.

He assured me that, “The good news is whether we do radiation, or remove your eye, the chances of metastasis are the same. The bad news is whether we do radiation, or remove your eye, the chances of metastasis are the same. That chance is 50/50 overall. If you decide to do radiation, which is what I am recommending, we can take a small sample of the tumor while we are placing the plaque and send it to Castle Bioscience for genetic testing. That will give us a much better idea of your odds of metastasis within 5 years.”

Did he just say odds of my metastasis? Is this really happening?

He explained the process of brachytherapy, or plaque radiation, as a gold dome containing radioactive seeds is individually made to fit my specific tumor. It will be sewn, ( you read that right) sewn onto the eye, over the tumor, and left there for five to seven days. Then he would do a second surgery to remove it. Before the plaque was placed he would take a small sample of the tumor for testing.

I am processing all this as fast as I can. I don’t know if it is from the tumor or the drops to dilate my eye or both of those things but, the whole room looks really blurry and far away and it was starting to spin. I am reminding myself to breath slowly.

I get a grip on myself . I think I agreed that the brachytherapy was the route I wanted. Well, I must have. That was the road on which we had just started.

Heading out the door, I stop to check out and am told once again that my insurance does not show me as a current member. @#$#@@#@#$ and @#$@$@$%@#!

“I am working with HR to get this resolved. I promise you I do have insurance. I am happy to pay for today’s visit so there won’t be a delay.” My face is red. I can feel my systolic blood pressure rising to a critical level.

Dr. Fulton’s nurse tells me that they need at least a 2 week lead time to schedule the radiation once the insurance approves.

"Call me as soon as you have approval and I will work on it at this end as well. You will need a history and physical from your primary doctor ,and lab work, but it has to be done within 5 days of the procedure so you can’t schedule it until we know when the surgery is going to be.”

She gave me the number of Dr. Jerry who is the radiation oncologist responsible for having the golden plaque made and designing the layout of the radioactive seeds. “He will need to see you next week to get started on the plaque.”

Fast forward one week and I get to meet with Dr. Jerry. I would hazard a guess that he is in his late 60’s, maybe even early 70’s, and I certainly value that experience. I received another CT scan of my eye. We had a discussion about how the whole process will work.

I am as comfortable as I am going to get with it. He is very easy to talk to and I felt good about him being involved in taking care of me.

Heading for the waiting room, I once again stop at the desk to check out and am told that the insurance is still not providing approval for the procedure.

I stayed on the phone, mostly on hold, with the #&#@ insurance,. I had classical music adding to my angry state of mind. All the way home. I am asking them to notify the doctor’s and facilities of approval and they are telling me they cannot give the approval until the physician or facility requests preapproval.

I cannot get it through to them that due to their issues with adding our facilities employees to the system they are not able to request approval. " YOU ARE TELLING THEM I AM NOT INSURED." All caps means I am yelling, Right?

I got on the phone to HR and was told they were still working on the problem. Not to WORRY! about it as they would get it taken care of.

If just one more person tells me not to WORRY! I will strangle them with my bare hands.

One week later when I am scheduled to see Dr. Jerry for my “final fitting” of the radiation plaque and the insurance is still not on board. I have discovered that they are also denying me for any tests or procedures as the company that “handles” that had not been updated regarding the merger of the “Healthcare” plans and that we were not in their database.

I am in the HR office talking to the assistant, to the assistant, to the secretary of benefits.

I am not amused. I can actually feel the artery on the side of my forehead pumping furiously. My blood pressure is nearing stroke level and I request, that this issue be elevated to the VP of HR because it is NOT acceptable.

I have to work that weekend and I do so with the constant drumbeat of the insurance debacle playing over and over in my head. I am quite sure that without insurance, “enucleation”, or removal of the entire eye will be my only option if I don’t get this insurance issue taken care of.

I am really fond of my eyes, They are by far my best feature.

My husband said they were the first thing he noticed when he met me. I know that’s a lie, because my boobs were definitely the first thing he noticed. I am quite fond of my eyes, nonetheless.

I stew all day Friday over how to handle this. I want to be professional, but the clock is ticking, and if I don’t advocate for myself, then no one will.

I have recently joined a Facebook group called Ocular Melanoma Foundation as well as the Texas Uveal Melanoma Group. There are approximately 3300 people registered with both groups combined.

I'll bet, half of those are dead.

I am a realist. If there is a 50/50 chance of metastasis, with no cure, and a 6-12 month overall survival, once metastasis is found, then probably half of the people on the support group are no longer in need of support.

Just keepin it real.

No one ever takes you off a Facebook support group. Come on now, you know it's true. This is why I suspect it is closer to 1500 members strong. I have posted about my insurance woes on the site. There is a great deal of support for my plight, and many who have been in the same boat. This is such a rare disease that it is not in most insurance company’s most frequent diagnosis codes.

When I got home at about seven pm on Friday evening I sat down at this very computer and composed a missive. I layed out all of the issues that had presented themselves since my diagnosis. I spoke about the fact that it was seriously affecting my ability to “Access Care.”

I debated as to whether to send it to the CEO. I knew I was jumping over several levels of management within HR.

Drastic circumstances call for drastic measures. I decided to send it to everyone in the chain of command, including the CEO, because time was of the essence.

The greatest thing about emails is the ability to just put it all out there and with one light click of the mouse you send your most important message to a large group of people simultaneously, and with lightning speed. The worst thing about email is that once you click that send button there is no return. You cannot pull it back.

I hit send.

The next morning when I opened my email I had a letter from the CEO asking me what I needed.

I was so relieved. I knew that if he could make those wheels start to turn he would.

I sent a message back telling him my story.

I needed someone to take the wheel on this issue of not being found on the insurance, or by the precertification company that was handling approval of testing. I needed to get my procedures approved. I needed the physicians who were out of network approved.

Most of these specialists were not available in network.

I needed each of those facilities, and physicians to receive notification that I was, in fact, both employed and insured.

So, it was written. So, it was done.

My entire family and I are forever grateful that from that morning on, the insurance issue was no more.

I was also assigned a “Case Manager” named, Casey, (Isn’t that quaint) who checks in with me every couple of weeks, and sometimes more often, to make sure that whatever procedures, tests, medications, or physicians I need are approved. She has been very helpful and with a Case Manager, named Casey, of course things started to move along.

My brachytherapy was scheduled for April 29, which was a Friday. Dr Fulton told me he does his surgery on Friday and removes on Monday. I thought the time frame was 5-7 days. He assured me that he had been doing it this way with great success for some time.

No turning back, NO way out, his thing was happening.

This is a photo of the plaque that was used for my Brachytherapy.

Solid gold and I didn't get to keep it. "They recycle" he said.

Each divit holds a radioactive seed. The dome shape keeps the radiation directed at the tumor and minimizes the radiation that is being received, other than that directed at the tumor.