50 bonus points if you know what the picture at the top is.
CHANDRA
The first appointment of the week was with Dr. Chandra. His nurse came in before him and sprayed some things in my nose that made it numb. Dr. Chandra then came in and put a bunch of tools up my nose to examine the endoscope site. He couldn’t see anything because there was so much dried blood up there, so he started working it loose and pulling it out. It was like my face is a circus, with my nose as the clown car. I couldn’t believe how many fat bloody clowns he pulled out of there. Dr. Chandra continues to impress.
Much of what Dr. Chandra said was a reiteration of what we talked about on the phone. The biopsy had positive margins, which means that the end of the nerve that they removed contained cancer cells, so it can be logically concluded that more cells remain. They couldn’t remove any more tissue surgically because the location was too close to my brain stem (
PELZER
I also had a consultation with Dr. Pelzer. As everyone knows, Dr. Pelzer has been the guiding force behind this entire battle. It always seems like he ends up possessing the most astute opinion during a critical decision, or forging the path that represents our best course through the wilderness. This scenario has repeated itself both in and out of the scope of his specialty. He was the one trying to save my vision. He was there to explain my options when I decided to remove my eye. He was the one holding the spoon when they did that one. He was there again to guide me to Dr. Chandra, whose endoscope tumor resection saved me a lot of lost tissue, pain, and recovery time. As a matter of fact, Dr. Pelzer came to see me (along with Dr. Fine) in the prep room before that surgery, even though they were not involved. And now, Dr. Pelzer has made much of the necessary inroads for me to be seen by Dr. Thornton.
CHANDLER
The meeting with Dr. Chandler revealed no neurological damage from the surgery. His recommendation on the tumor situation was to proceed with gamma knife. Gamma knife is when they give you a six week dose of radiation in one sitting on one focused area. It’s called radiosurgery instead of radiation therapy because it is effectively like trying to cut out a smiley face with a hole punch.
THORNTON
Dr. Thornton’s appointment was amazing! In the past, I have had doctor’s visits under 15 seconds (yes, I timed them). Dr. Thornton spent two and a half hours with me. Furthermore, his nurse stated that this was fairly normal for him to spend with each patient. I felt like I was in a class named EDY579: Comprehensive Topics Affecting the Rest of Your Life. He gave me his professional medical life story (http://mpri.org/news/press/new_medicaldirector.pdf). I got a history lesson on the history of nuclear research in the United States and how it evolved from atomic bombs to proton therapy. I got a physics lesson on particles and how a cyclotron works. I got an anatomy and pathology lesson on the nerves, glands, and soft tissue of the head and how different types of tumor attack them. I got a radiological imaging study, particularly my own, going through several of my scans; effectively teaching me how radiologists analyze my images. I got a lesson on radiology histograms, and how the radiation limits of different areas affect my treatment options.
PROTON THERAPY
1. If we choose the proton option, and it seems highly unlikely to go a different route, treatment will begin during the second half of November or first part of December. I learned so much about proton therapy, I’ll try to break it up into bite size morsels of tasty science.
2. Protons have two advantages over regular photon or electron radiation therapy: (1) protons can be “stopped”, and (2) they have greater accuracy. The accuracy of a proton field (the distance that it affects tissue surrounding the target area to a certain degree) is approximately 1 mm. The accuracy of IMRT radiation (the kind I had last time) is 5 – 7 mm. As far as stopping protons, think “lightsabre”. The protons slow down as they pass close to electrons and can be effectively stopped. The protons do very little damage to the tissue they travel through on the way into my head, and then detonate at a predetermined depth. They do not exit the other side of my head. Electrons tend to pass through the target area and exit, causing damage on the way in and out.
3. The amount of control present in proton radiation is mostly due to the nature of the particle (heavy), but also to the delivery method. The protons are stripped from hydrogen atoms in a building next door (called a cyclotron) to the treatment building, accelerated to 2/3 the speed of light, and piped underground in an ultra-low vacuum tube to the treatment room.
4. The team of physicists and engineers use computer aided design and manufacturing to cut brass apertures in the exact shape of the target areas. The proton beam passes through this aperture so that it matches its shape in two dimensions (think play-doh extruder). In addition, a Lucite block (bulletproof glass) is cut to an exact length. It serves as a lense (although not curved) to adjust the length of the beam (lightsabre, remember?). The longer the Lucite block, the sooner the proton beam stops and deposits its radiation payload. The precision required in the design and manufacturing of these control devices is stunning.
5. Forgot to mention the bb’s! Similar to the positioning system for the endoscope surgery, I’ll have reference points on my head for the positioning of the proton machine. In order to preserve the precision of the treatment, however, this time they will be three metal bb’s screwed into my skull (under the skin). They are permanent. Cool!
6. The option for proton therapy does not include the dual modality feature of chemotherapy. I’m almost reluctant to choose proton, since a false correlation exists in my mind between pain and the effectiveness of the treatment. I’m willing to endure anything to produce the most positive outcome. So, I’ll be asking them to beat my legs with a collapsible baton during treatment. The discomfort is bound to make it more effective.
7. I’ll be held in place during treatment by my teeth. Teeth are the only thing on the outside of your body connected to the skeletal system. It’s the most secure way to keep me in place during the treatment. If I move, the +/- 1mm accuracy may be compromised. It’s a shame they couldn’t lock me in by my fingernails and/or testicles (see #6). The baton may be unnecessary after all.
8. If proton is chosen, the amount of radiation will be bumped up considerably from my last treatment. To put it in perspective, keep in mind that the side effects and tissue damage associated with radiation are not linear in nature. It’s like doing shots, at some point y
our liver can’t process them fast enough, and then your condition worsens rapidly. Radiation is similar, in that you are fine for the first few weeks, and then your body falls further and further behind in an attempt to recover each day. Radiation is measured in rads. An x-ray is ½ rad. A CT scan is 3 rads. My last treatment was 5,940 rads, and this proton treatment will exceed 7,000 rads. I’ll be visible from space, and able to recharge my own cell phone.
our liver can’t process them fast enough, and then your condition worsens rapidly. Radiation is similar, in that you are fine for the first few weeks, and then your body falls further and further behind in an attempt to recover each day. Radiation is measured in rads. An x-ray is ½ rad. A CT scan is 3 rads. My last treatment was 5,940 rads, and this proton treatment will exceed 7,000 rads. I’ll be visible from space, and able to recharge my own cell phone.
9. The side effects may be further exacerbated by the fact that previously radiated tissue tends to be hypoxic, meaning that it doesn’t carry oxygen as efficiently; therefore not healing as well. The radiation target has very little previous radiation damage, but there is some. In addition, the previously radiated area (not targeted this time) will receive a few thousand rads of residual radiation.
10. A single proton session consists of 50 minutes of positioning to ensure that I am placed in exactly the same reference point each day. To aid in this, I’ll be moved around by a large robot. It’s the same robot they use to build Toyota Camry’s. I can’t make this stuff up. After positioning, it takes 5 minutes to start the proton machine. “It’s far from a turnkey device” according to Dr. Thornton. After 55 minutes of my one hour session, there is a whopping total of 2 minutes of radiation. Protons are fast.
11. There are two risks associated with all treatment options available (proton or traditional). The primary risk is that tumor will survive the treatment. Most of the target area has not been radiated, but some has received a residual amount and may be resistant to radiation. 7000 rads should kill it regardless, but may not. The second risk is damage to surrounding structures. The two areas of main concern are the brain stem and the chiasm. The brain stem is the connection between the brain and the central nerves of the body. Its main function is to control heart rate and breathing. If it suffers too much damage, it could put my life in jeopardy. In addition, too much radiation to the brain stem could cause cerebral edema, or brain swelling, six months to one year after treatment. There are many forms of treatment for cerebral edema, but it is a serious condition. The other at risk structure is the chiasm. It is the place where the left and right optical nerves connect. If it suffers too much damage, I could lose vision in my right eye. The chiasm is only 5 millimeters from the target area.
No matter which option is selected, this is an all-or-nothing scenario. Because of the amount of radiation that I will have undergone, there will be no further opportunity to radiate should any tumor survive. This is a one shot, one kill situation. We are 1000 meters to target; the wind is shifting. We have one round.
