Moving right along

I had my long awaited, virtual appointment with Northwestern yesterday.  The meeting began with a nurse, Kim, who asked a series of questions that, as it turns out, I was supposed to have completed before the meeting.  She said that almost no one completes the questionnaire before hand, and she was happy to guide me through it.  

The questions ranged from the clinical aspects of my disease, which included; When did I first have symptoms?  When did I feel the need to see a doctor? Etc? The questionnaire also delved into the personal; Do I have an Advanced Directive on file? Do I have a Living Will?  Do I have a Power of Attorney on file?  Who would be my first point of contact in case of emergency?  Who would be on a list of people that they could share information with?

After answering all of the questions, and asking a few of my own, Kim signed off and asked that I stand by for Dr. Akthar.

I sat there, in my oversized simulated leather chair, laptop on my lap, with the sun shining on me, waiting for the doctor to come on.  It was the perfect recipe for taking a nap... which I did.  I awoke to the doctor saying, "Hello Joseph, I'm Dr. Akthar".  

Now, I know from experience that I snore the loudest when I am sitting up, with my head tipped back. This was the exact position that I was in when the doctor came on.  I looked at the clock to find it was 30 minutes since Kim had signed off. He apologized for the wait, but made no comment as to whether or not I was snoring.  I'm sure that I wouldn't have been the first.

He reviewed my history in a "Reader's Digest" style, condensed version.  I've had several doctors along the way.  Each having notes that Dr. Aktar read in chronological order.  "It has been quite a journey for you", he said.  Yes, it has.

Through split screens on the computer, he showed me the step by step procedure of Proton Beam Radiation therapy.  He explained that protons could be targeted to absolute precise positions within the body.  

The first step will be to make me a custom mask that will hold me in position on the table.  It is some kind of material that resembles a net, that when warmed, becomes pliable.  It is shaped around my head, neck and shoulders.  During the procedure, It will be clamped to the table so that I am unable to move - not even a little - which as you can imagine is a very good idea when shooting radioactive protons into my head.

Before any treatment begins, I will travel to the facility in Warrenville, IL and have another detailed MRI, then what is called a CT Simulation.  This is a very detailed CT that the computer will use to target exactly where the cancer is.  Dr. Akthar will work with his team to map out the exact locations that the computer will follow.  This part of the process will take about two weeks to prepare.  That's a bit of a bummer, but I'm getting used to the delays.

Minutes ago, I received a phone call from Jennifer, my Nurse Navigator from Northwestern.  Jennifer is my planner, organizer, advocate, and for all practical purposes, my go-to gal to Northwestern.  She is trying to coordinate all of the appointments that need to take place before treatment.  It looks like it will be the week of February 22nd before I can get in.  That puts me into the second week of March before treatment can begin.  Ironically, that will be exactly one year since the symptoms first began.

Jennifer understands my anxiousness to get this going.  She said that the team also understands, and is also keenly aware of just how rare this cancer is.

One of the key terms of my diagnosis is; Perineural Tumor Spread.  This means that the tumor is spreading along a nerve, or in my case, a series of nerves.  That, in itself, is not uncommon.  When you add to it, Squamous Cell Carcinoma (SCC), that makes it a very rare form of cancer.  SCC does not respond well to Chemo alone.  It can only be stopped with radiation.  I will receive both, with radiation being the primary treatment, and chemo just to clean up any cancer cells that may survive the radiation.  Jennifer assured me that the team that is working on my case is the best there is.  They will take the appropriate time to get it right.  I can't ask for more than that.

Northwestern knows that I contacted Mayo first, and that they are also working on a plan for me.  They said that I should keep both centers going since we don't know what the insurance company may say.  If the insurance company has a previous relationship with Mayo, they might send me there.  Surprisingly, both Jennifer and Dr. Akthar said that they would be more than happy to share any information that Mayo may need to help me get treated.   That was nice for them to say.