There is one thing that I can't say enough about, and that is how nice, caring, and professional the staff at Marshfield Clinics truly is. They all seem to really enjoy what they are doing, and enjoy where they work. That means a lot to me.
I began the day a little apprehensive - OK, maybe a little scared. The weight of what's ahead is beginning to bare down on me. The nursing staff sensed that, and spent as much time as I needed to answer questions, and get my head in the game.
This is going to tough. Probably the hardest thing that I have ever done in my life.
I had a pretty adventurous childhood. Growing up in southern California, I spent most of those early years camping in the desert, with my family, in our blue and white Shasta trailer. You know the kind with the silver wings on the back?
My brothers and I would hike for miles, always looking for the next adventure. Although sometimes, adventure would find us. On one particular hike, I became preoccupied by an Ocotillo cactus skeleton that I had found along the way. It was maybe two feet long, hollow in the middle, and as straight as can be. In my six year old imaginative mind, it was a spy glass that a pirate captain would use to see what was on the horizon. The problem with looking towards the horizon is that you can't see what is right in front of you, and what was right in front of me? A Cholla cactus.
The Cholla cactus is probably worth Googling. This one in particular was about 36" tall, and made up of hundreds of baseball sized, interconnecting, balls covered with 2" needles. It is also known as the "jumping cactus", since you would swear that if you were closer than a foot away, it would jump at you and stick you.
I tripped on, and fell face first right on top of a Cholla. The pain was unimaginable. Marty picked me up and gently rolled me over on my back. I was covered with dozens of balls, from my chest to my toes. I remember looking up at Marty, as he cradled my head. Instantly, he yelled to Jim, "Go get Dad!"
The next thing I remember was my dad looking over me, holding a pair of channel-lock plyers, and him saying, "This is going to hurt me more than it is going to hurt you."
My first appointment yesterday was with Dr. Lee, my Radiation Oncologist. We reviewed the scans, and talked at length about the process. He needed to make sure that I understood the risks involved in targeted radiation therapy. It is not exact. There is a field of penetration around the targeted area that is susceptible to damage. Most of the time it is muscle tissue and bone structure that will heal in time. In my case, there are two areas that has caused him to pause.
The first is the tumor under my left eye. It is way too close to the eye to attempt targeted X-Ray treatment. The radiation would definitely destroy my eye, rendering me blind in my left eye. The other is the tumor where the Maxillary nerve follows closely to the base of the skull. The brain is only separated by a thin piece of bone which risks brain injury, known as radiation encephalopathy. This could cause a variety of neuro issues including stroke.
Dr. Lee is recommending a referral to have Proton Therapy. Proton therapy is a more exact radiation treatment that more precisely places the radiation dose where it needs to be.
The two closest facilities that offer it are Mayo Clinic in Rochester, MN or Northwestern Cancer Center in Warrenville, IL.
I asked if I should go ahead with the chemo port insertion. He said that no matter what happens, I will be poked and prodded so many times in the next few months that having the port will be a lifesaver.
While waiting for the port insertion surgery, I decided to fill out an advanced directive form. This simply states, on the record, who they can talk to about my condition, and who can make decisions for me if I am incapacitated. The issue came up two weeks ago when I had my biopsy surgery. My daughter, Jessica, called the hospital to ask how I was doing, and they couldn't tell her anything. It is a good idea to have this form filled out before something happens. I would suggest that all of you, on your next visit to your primary physician, fill out this form. At least it will be there if you need it.
An emergency surgery came up so I was bumped about an hour. Not a big deal. I made a phone call to a friend, Cindy. Cindy and her husband Tony have both had cancer. Tony is 100% cancer free now, and Cindy is still working through hers. I told her about the proton therapy referral. She always gives good advice.
Any of you that have been around me may have heard me say from time to time, "I had a Joe moment." Joe moments are the times that I find humor in a moment even when, often times, no one else does. While getting ready for my port insertion surgery, Dr. Boyer was checking me out to find the best location. I told her that if all goes well, I plan on being trap shooting again by May, so placing the port on the left would be best for me. She normally puts it on the right, but was willing to see what she could do. With gloved hand she began examining my chest, massaging my pectoral muscles. She said, "Wow, you have very large pecs" as she continued to feel around. I looked up at her and said, "Doc, you're kinda turning me on." She blushed, scoffed, and said, "I'll see you in the OR."
The port insertion went well. It is interesting that it is completely under my skin. I thought there would be a plastic cap sticking out. This reduces the risk of infection.
While sitting in recovery, I answered my phone to find the radiology department calling. As it turns out, the insurance company has denied the PET scan that I am supposed to have. How can that be? Dr. Lee was waiting for those results so that he could make his case for referral to proton therapy. They will allow a series of CT scans, using the same sugar contrast, but not a PET? This is ridiculous. I asked if they would do it in the same appointment time. No. The CT's will take longer so now I am pushed back another week.
Little did I know that I would be fighting two enemies - the cancer and the insurance company.
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