Sunday, September 12, 2010

The big news

This whole thing started about a month ago, when I started seeing some strange flashes of light in the upper left quadrant of my field of vision in my left eye. A medium sized white light would appear, sometimes a circular shape, and sometimes shaped like a pancreas, and then it would fade away starting at the edges, until it was gone. I'm pretty sure that the last point of light was always in the same spot in space. Each flash would last about 1 second from first appearance until it had faded away. I didn't think much of it at first, but I made a mental note to pay attention to how frequently it happened, if anything about it changed, etc. It started out happening about once every hour.

Over the next couple of weeks the frequency had increased a little bit. A quick Google search made it seem like this sort of thing could be attributed to anxiety, fatigue, sleep apnea, whatever. I was a little concerned, but I didn't think that it was anything too urgent.

Then, about 4 or 5 days ago, I woke up to take our dog Duke out for a walk while Angel took a shower to start our routine for getting ready for work. When we got home from the walk I gave him his breakfast, then headed upstairs to stretch my lower back. I was laying on my back on the floor using my Spinal Stretch device (http://spinalstretch.com/, it's awesome, thanks Angel for getting it for me!) All of a sudden I realized that Duke was nearly hovering over my face, and I hadn't seen him coming. That really spooked me, because I know that I should have seen him out of the corner of my eye. I started experimenting a bit and realized that the vision in my upper left quadrant was not nearly as good as the other side. If I tried to look up and to the left with my right eye closed, the whole corner was a dark, fluttery gray. This realization scared the shit out of me.

I didn't even have a primary care physician, because I hadn't been to the doctor in a very long time. I looked on the website for United Healthcare to find a doctor in the area. After calling a couple who weren't taking new patients, I ended up with a Dr. Zwerin, a general practitioner in internal medicine. I got an appointment with him Friday morning. He did a thorough exam and asked me a bunch of questions about my medical history and my concerns. He ended up telling me that based on his exam I was "disgustingly healthy," but that my story about my eye was deeply concerning to him. He guessed that I had a detaching retina, which is treated as a medical emergency because it can quickly lead to blindness. His office assistant made a couple of phone calls and ended up getting me an appointment 4 hours later with a retinal specialist named Dr. DeSouza.

Luckily, Angel was able to leave work early to go to this appointment with me. During this appointment, a very friendly technician was testing my eyes in all sorts of ways that made me realize my left-eye vision was worse than I had originally thought. When my right eye was covered, she would ask me to tell her how many fingers she was holding up as I looked straight ahead. As long as she held her fingers up above my head, I couldn't see them until she dropped them down to virtually straight out in front of my eye. Because of how light enters the eye through the lens, this meant that something funky was definitely happening on the bottom half of my retina.

I got some drops to dilate my pupils, waited a while, had a couple more tests, then I got in to see the doctor. I lay back in his chair looking at the ceiling, and then he came over with a device to look at my retinas. The light he pointed at my eyes was much brighter in the right eye than it was in the left. He walked across the room to start up an ultrasound machine as he said "Well, it's not good news." Angel and I thought to ourselves that perhaps the retina was farther detached than what we were expecting to hear. He then followed with "It's a malignancy."

I just laid there and stared at the ceiling, because I was speechless for several minutes. I could tell that Angel, who was sitting off to my right, was beginning to cry, but she was doing a great job keeping it in check. She asked the doctor a couple of questions as he started rolling his ultrasound wand around my closed left eye, taking measurements of whatever it was that he was seeing. When we asked him how sure he was, he said "I'm 100% sure that it's a malignancy, and I'm 95% sure that it's a choroidal melanoma." The measurements told him that the tumor was about 5mm in diameter, just less than a quarter of an inch (correction: I now know that the tumor is 10.5 mm in diameter and 5 mm in depth). The tumor is growing underneath my retina, causing it to detach from the underlayers (the choroid and the sclera [http://en.wikipedia.org/wiki/File:Schematic_diagram_of_the_human_eye_en.svg]).

I looked over at Angel to see that she was visibly upset. The first thought in my mind was that I was so sad that she had to hear this news. Thinking about how upset this made her brought tears to my eyes. The doctor kept glancing over at her as he walked back and forth from a table in the room to my chair, so he could look into my eye once more. I could see that he felt bad, and a couple of times he said "I'm sorry, I know this is not what you expected to hear today." My mind was racing, but I couldn't help to think about some essays from a great medical author, Atul Gawande, in which he mentions how terribly many physicians perform when it comes to delivering bad news. I know Dr. DeSouza felt sorry for us, but both Angel and I agree that he did a pretty terrible job of delivering the bad news. I don't blame him for it, I know I couldn't have done any better.

We were escorted to the next room when another technician injected concentrated solution of fluorescein sodium into my arm so they could take some fluorescence angiography images of my retinas as the fluorescent dye passed through my blood vessels. She incorrectly told us that it is a vegetable dye rather than a synthetic molecule. She took a time course of pictures after the injection so they could track how the dye was flowing through the vasculature in the retina and the choroid. Here are the last two pictures they took...one of the right eye and one of the left. You can see the big, bright, highly vascularized blob that shouldn't be there.

There are no scale bars or anything, so there's no way to tell how much of the retina is being shown, or exactly how large the tumor really is.

The doctor came back in to talk to us a little longer. He told us that this tumor is considered a medium-sized tumor for this type of cancer. He went on to tell us that for large size tumors, the general treatment is to remove the eye, a procedure called enucleation. Medium sized tumors generally respond well to radiation, although there is still a small possibility that the eye will need to be removed. And if the eye does not need to be removed, it's hard to say whether the vision in this eye will be spared as a result of the radiation (more on this in the next post). He said that this type of cancer doesn't generally metastasize until its later and larger stages, so there's only a small chance that the cancer has spread up to this point. He said that I will need to see a radiologist to make sure the cancer is still only in the eye, and then that I will need to get started on radiation treatment as soon as I can. He said that no one in the Phoenix area specializes in radiation on the eye, but he knew of a good group in Tucson and one in LA that he wanted me to go to.

He wrote me a prescription for a chest x-ray (PA and lateral) and a panel of liver function tests, to make sure that the cancer hasn't spread, and told me that he would call Monday morning to see whether I've decided to go to Tucson or Los Angeles.

As we waited in the waiting room to see the doctor, time passed so slowly, and then once this news hit, everything seemed to happen so fast. It's just the way that Angel and I are to never be satisfied with enough information. We could have continued asking questions forever, but there wasn't enough time to do so. When we returned to the lobby to pay my $30 co-pay, there was a man furiously yelling at the staff about why he was having to wait so long, and threatening to report them to the medical board. I desperately wanted to punch this asshole in the throat and tell him that the doctor was spending a little extra time explaining to my wife and I that I have cancer, and that was partially why he had to wait a few extra minutes. Instead we just quietly walked out the door to head home.

More later...

8 comments:

  1. The minute we heard the news we started praying for you and Angel. We are thinking about you and want you to know that so many people in this world LOVE you! Our heart hurts for you both that you have to go through this! We will continue to pray for you and love you very much! Lauren and Brian Trollope

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  2. Jer - thank you so much for creating a blog to keep us updated. I hate that you and Angel and your family have to go through this. Your post really moved me because I feel like I was there with you and I can only imagine what that was like. Also, it is a good reminder of why to be patient at the doctor's office - a whole new perspective. Thank you.

    On a lighter note, I have been thinking of how badass you would look with an eye patch! Downright sexy, if you ask me! Though I'm convinced you won't need one. You always beat the odds, Jer!!

    Much love, Audrey

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  3. Thanks Jer...it is great to know the details. I am SO incredibly sorry you guys are going through this, I am sure it is scary. I KNOW things will be ok (easy for me to say, I know, but I am serious). You are a fighter and as Auddie said, you always beat the odds, in fact, you love odds. Hit by lightning for gods' sake! Seriously...you are one in billion, an incredible friend and person with an incredible sense of humor and outlook on life. It is exactly this attitude that will get you through this, so keep it up! Please let us know if there is anything we can do - dinners, watch your kids, take care of your lawn, you name it ;)

    I wish you would have punched that dude. That would have kicked ass. Oh, and can you please play the lottery for me?

    Much love, Josh

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  4. Hi,

    I know we have not talked much over the years, but please know that you are in our thoughts and prayers.

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  5. Hi Jeremy (& Angel),
    Rick and I were shocked to hear this news via Chad through FB. You are in our thoughts and prayers!
    Hugs, Lenore & Rick Brooks

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  6. Cristin and Dan GorajczykSeptember 13, 2010 at 5:59 PM

    Dan and I were shocked as well when we read the news on Angel's FB post. we are so very sorry that you all have to go through this. We have been thinking and praying for you all weekend and will continue to do so. Thank you for creating this blog to keep us all informed and I hope it does some good for you as well to write about it.
    love and hugs...Dan and Cristin

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  7. Hi Jeremy,
    I know it’s been a long time since we’ve spoken. I’ve sort of lost touch with most of the old Chandler crowd. That is, apart from what they put on their Facebook status updates (“My new baby just made the cutest poop, look at the picture I took with my iPhone!”, important stuff like that).
    I read your blog with great interest, and sadness, and inspiration at your positive attitude in the face of such a stressful new set of circumstances. Jenny and I have been thinking about you since we heard the news this weekend, and you and Angel are in our thoughts and prayers. We’re thinking of you, and I have no doubt that your strength and positivity and humor will take you far.
    -Paul

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  8. Jeremy,

    You have the best friends and family around! Everyone is supporting you and Angel (and the rest of us who can't sleep!) We all love and respect you guys more than you know.

    Can't wait to chalk this one up on your "kicked it's ass list:" Ruptured appendix, fought off Tim when he tried to "kick you in your cancer," the knife fight in New York (according to what I told Brad back in the day), the dog attack in Alaska when you pushed Angel out of the way to run the hell out of there, the freakin lighting strike that threw you across your bedroom, the somehow convincing the cop not to give you a ticket when you were too drunk to drive, stealing the chair out of The Vine and not being stopped by anyone, you know, the "list!"

    Pretty awesome man, keep it up brother.

    We all love you,
    CHAD

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