Under the Knife Again

The biopsy date is set for 30SEP. As planned, there will be three doctors: Dr. Chandra is the endoscope surgeon, Dr. Pelzer is the otolaryngology surgeon, and Dr. Chandler is the neurosurgeon. When they do the biopsy, they will take a tissue sample from a few places and run it to the lab to see if it is tumor or not. If not, they will sew me back up and that will be that. If it is positive, they will keep me open and remove the entire trigeminal nerve and any other infected tissue. Either way, I will end up losing all sensation on the left half of my face. I won’t lose any muscular function, but there will be no nerve to transmit feeling.
The nature of surgery is a bit peculiar to me. I mean, with all this technology at our disposal, we are still carving up my head to get eyes-on whats going on in there. I have had dozens of MRI’s, CT scans, PET scans, ultrasound, and even a full body bone scan. I have received every type of diagnostic imaging that exists. My entire NMH “frequently irradiated” membership card is full. I think I qualify for some sort of prize. Its like skeeball, but with unstable isotopes and high energy laser beams pointed at your head. I told Dr. Chandra about my concerns over the amount of radiation I was receiving from all of these scans, and he told me “compared to your radiation treatment, its like jumping in the pool and worrying about a few drops of rain”. Outstanding.
To date, the results from all of this modern marvel imaging technology is the universally recognized shoulder shrug of ignorance.
So here we are: Under the Knife Again.
No offense to all of my wonderful surgeons who are also reading this, but its a bit barbaric. At the end of the day, when all of these images are read and interpreted by incredibly competent people who have dedicated their life to this field of medicing, the only recourse is to open my head up and take a look inside. Then, use another instrument (probably a really clean spoon) to scoop out some tissue and sew me back up. It is humbling to know that at the end of the day, it is the immeasurable dexterity of the surgeon that my health will depend on.
Before I get too carried away with my everything-old-is-new-again ranting, its appropriate at this point to admit that this will be an advanced technology surgical procedure. Dr. Pelzer is bringing in Dr. Chandra, who is an endoscopic surgery specialist. Endoscopic surgery is when they shove a fiber optic camera with some tools on it into your nose and then patrol around the inside of your body. Its a lot more versatile than it seems. Endscopes can travel into the heart, brain, and other organs with minimal invasiveness.

This procedure will be (relatively) minor when compared to my other surgeries. I should be out of the hospital the next day at the latest, and dusting off the PS3 shortly thereafter. It will be motivating to at least have some solid answers as to what is going on. We are now waist deep in “the long war”. There is a range of possible outcomes from this diagnostic procedure, but in any case I have determined it is critical that I shift my mindset for a battle of endurance. We have won the initial push, we have made the initial tough decisions, and now it is crucial to solidify that victory with a resolute commitment to vigilance and critical decision making. Go Team.
September 24, 2008 | Eddy's Journal | Comments (5)

Shift in Strategy

The amount of information since last writing is considerable. I wanted to get some of this out before now, but this is the first time I’ve had an opportunity to catch my breath, organize my thoughts, and accurately brief the ever changing situation. I’ll present all the information as it occurred, in an attempt to illustrate the different thought processes as they evolved to the current situation. Plus, I don’t want to ruin the ending.
After getting the advice from Dr. Agulnik to wait ten weeks to rescan and check for any changes in the affected area, the decision was made to seek a second opinion. This decision was made not as a result of lack of confidence in Dr. Agulnik or in Northwestern, but rather as an acknowledgement of the fact that the current situation had wandered into the realm of subjective opinion and judgment calls. It’s no one’s fault that no one knows what’s going on, but the uncertainty of the situation had risen to a level that it was certainly appropriate to expand the field of data through other resources: more doctors.

DR. VOKES – MEDICAL ONCOLOGIST AT UoC

So off I go to see Dr. Vokes, the medical oncologist at the University of Chicago Hospital. It was very exciting, as Dr. Vokes is the pioneer and champion of combined modality therapy. Combined modality therapy is a range of treatments that utilize the synergy created from undergoing radiation and chemotherapy concurrently. Under Dr. Vokes at U of C, this usually means radiation twice a day, as well as chemotherapy on the same day, for five consecutive days, followed by nine days off. This cycle is usually repeated five times.

Here is Dr. Vokes: http://www.uchospitals.edu/physicians/everett-vokes.html

And combined modality therapy: http://www.uchospitals.edu/news/2000/20000413-vokes.html

Dr. Vokes was considerably more concerned about the situation. He agreed with the wait and see opinion of Dr. Agulnik, but suggested a shorter interval of 6 weeks before re-scanning. We decide to split the difference and schedule the scans for 8 weeks from the last set. The most important development of this appointment is that Dr. Vokes informs us that we should be consulting primarily with an ENT surgeon. He highly recommends Dr. Stenson, who we make an appointment with.

DR. STENSON – OTOLARYNGOLOGY SURGEON AT UoC

A few days later, we see Dr. Stenson. Our appointment with her was powerful. She has an aggressive outlook on cancer that is very compatible with mine. Instead of waiting, she prefers to biopsy immediately. A biopsy is when a small amount of tissue is taken and then tested for cancer cells. Her mindset appeals to me. “Why are we waiting” she says. According to Dr. Agulnik, the reason for not biopsying is that the affected tissue is so small that the risk of a false negative is high. A false negative result would be when the surgeon misses the affected area and takes tissue to be tested that is “good”. This tissue will be tested for cancer as negative, but is in fact false because it was taken from the wrong place. However, Dr. Stenson and I agree that a false negative result does us no harm, we would simply be in the same close monitoring situation as prior to the biopsy. So we should go for it.

Given this new aggressive diagnostic stance, a biopsy is scheduled with Dr. Stenson for the following week (last week). Dr. Stenson is planning to go in through my nose, as well as make an incision on the left side of my face to get to the affected area. We were so impressed with Dr. Stenson that we decided to utilize her as our primary physician for treatment going forward. I felt a tremendous kinship with her, she seemed genuinely personally motivated to make/keep me alive and healthy. Her intensity, honesty, and competence are qualities that are very valuable in the situations we are facing.

DR. HARRRAF – RADIOLOGY ONCOLOGIST AT UoC

We next met with Dr. Harraf, the person in charge of radiation treatments at UoC, for the first time. Dr. Harraf echoed Dr. Stenson’s aggressive stance on the situation. Pending the results of the biopsy, we discussed treatment options such as combined modality therapy, proton therapy, and others. The level of close cooperation between the doctors at UoC on post surgical treatments was very impressive.

DR. PELZER – OTOLARYNGOLOGY SURGEON AT NMH

The reasoning of Dr. Vokes to consult Dr. Stenson led me to schedule an appointment with Dr. Pelzer before the biopsy (still with me?). I have a tremendous respect for Dr. Pelzer, and it was very important to consult with him before proceeding. It took a few stressful days to get the appointment, but Maria did a wonderful job of getting us in to see him as soon as I was able to get a hold of her.

DR. CHANDRA – ENDOSCOPIC SURGEON AT NMH

After the appointment, prior to leaving the hospital, Dr. Pelzer called me on my cell phone and politely asked me if I could come back up to the 17th floor for a few minutes. “Absolutely” is my reply. Upon returning, Dr. Pelzer introduces us to Dr. Chandra, who was coincidentally in the area. Dr. Chandra wants to discuss my upcoming biopsy. He shows us several places where he wants Dr. Stenson to pay special attention, and outlines the reason for his concerns. I am trying to absorb all of the complicated information, when it occurs to me “why would I attempt to be the middleman in this exchange of information, and why would I have two different surgery teams (one for the biopsy, and for the surgery if necessary)? The right decision at this point is obvious. We are going to have Dr. Chandra, Chandler, and Pelzer do the biopsy endoscopically at NMH. It was hard to not go with Dr. Stenson, since she had been so impressive with her genuine commitment to my health, but the NMH team is the most appropriate capability for the situation.

What a ride!

OTHER INFORMATION

The only other bit of information was a PET scan, which is a nuclear medicine scan. They inject you with a mixture of sugar and radioactive chemicals. Cancer cells are greedy with food, so they look for places where more sugar is going than should be. The scan was completely negative, which is great, but it is not a definitive diagnostic in that it doesn’t show microscopic tumor.

I have also had an additional MRI of the cervical spine, as I have had some numbness in my right index finger in the past week. The MRI is precautionary, and will most likely show that nothing is wrong. I just did it so that I could have one less thing to worry about.

THANK YOU!

I know this has been a lot of information to digest at one sitting. I will try to update more frequently so as to make this more enjoyable (and shorter) to read. Thanks for everyone’s continued support.

September 22, 2008 | Eddy's Journal | Comments (4)