Since my log here includes my pre-treatment testing and simulation, this is really the last day of CK radiotherapy. I wanted to post this sooner, but got logged out in the middle of posting and lost everything. So, here it goes again.
On this last day of CK treatment, the overall mood was that this was easy and that I didn't need to be pampered any further. Regardless, everyone was professional and very nice as they have been. I was, again, greeted by the neurosurgeon present for my CT scan and Day 3 CK Treatment. I was then immediately brought into the CK2 room for Levi to do his thing. I asked about bringing my iPhone in the room with me (forgetting that it has been plugged into the dock to make music) and was told that Levi's beam was so narrow, no such objects would be a problem. Then, I was asked if I wanted to give up the phone for music and (duh!) I remembered that, yes, I do. I gave the phone to Jackie with instructions to play through Sade's Diamond Life album, rather than the random shuffle done the day previous (for those of you that are familiar, Sade is perfect to relax to). I then lept upon the table, moved to place my head in the exact spot on the pillow somehow known to the staff to be the sweet spot. I was quickly fastened down under the mask and my head shifted ever so slightly to be in the exact position I was already familiar with.
The staff said goodbye, the heavy door was locked with the extreme sound of a bank vault door, I was asked through the microphones/speaker system if I was ok and ready to go. I gave the word that I was ready and Levi began his familar movement until he was obliquely above my head and face. Then, he was energized in a way that was reminiscent of the Death Star about to fire in the eariest Star Wars flick. That should not unnerve anyone, since the patient is there to be blasted with radiation. The sound just seems appropriate. Also, it is only heard at the beginning when energizing and not at any other times.
Levi tends to make a few lens movements to fire at angles while its head and apparatus remain in position before the apparatus moves to a new spot. As mentioned before, I (and apparently Tumbleweed) play the game of trying to swallow only when the apparatus is moving to a new location and not while the lenses are pivoting or still and firing. Unlike the last session, I felt like I really had nailed the swallowing to only when the entire apparatus was moving. It probably matters not, but I felt successful in some way, which is not a bad feeling when you feel your genetics or environment have failed you to put you on this table in the first instance.
Needless to say, Sade was the perfect music because I fell into and remained in a fairly relaxed state of mind, almost dozing off at times. Being this relaxed is the trick to not moving. I highly recommend finding your music, yoga or other trance that will bring you some delta waves and a lower state of consciousness.
At every session either at the halfway or 20-minute mark, Levi turns off, parks and goes to sleep for a minute. I get lots of swallowing, breathing and other fidgeting in at that point. The very first time this happened in my first session, the staff told me that I had 10 more minutes and was doing well.
Levi concluded his behavior and I was greated by staff, got up and began slowly walking out the lab room. I was congratulated for graduating, asked for my cap and gown, was given my face mask and told it was my cap and slowly exited the area. I was hugged by one of my nurses (they really are sweet, caring people), said goodbye and was led to the recliner in the hallway. Dr. Gibbs and I had some discussions regarding my follow-up expectations. I was told to inform her of any symptom changes and that I would have a 6-month MRI as my next event. I thanked her profusely for being on my team and said goodbye.
I was then given the last doses of my steroid and anti-nausea meds (which I am not sorry to say goodbye to). Then, another of my nurses walked my family and I all the way around the huge Stanford Hospital complex (remaining inside the whole time) until reaching Dr. Chang's offices. After a brief wait, we were brought into an examination room to have a parting discussion with Dr. Chang. He was as good-natured and humerous as ever. We discussed reporting symptoms as they occurred, that I could return to Stanford for the MRI or have it locally and sent to him for review. We parted as I had with Dr. Gibbs, i.e. with a warm goodbye and thanking them both for their professionalism and fighting for me.
In closing, the CK2 process was pretty easy and non-invasive. The focus with CK should be entirely on the future, not on the procedure, as it might be with surgery. In other words, will the CK completely and forever arrest growth? Despite the odds to the contrary, can the growth be cancerous? Lasty, what will be my symptomology into the future. Everyone is different, but I for one am very comfortable with my choice of CK. It is based upon all the available information that I could get my hands on and that existed at this point in time.
I cannot praise the physicians and staff at Stanford enough. They were the absolute best! I felt like I was being treated by intelligent, very knowlegeable, experienced, caring human beings at every step of the process.
Since my earlier posting was foiled (see above), I can give a bit of an epilogue here. I am back home in Colorado. I feel more fullness in my right ear and more tinnitus than was typical pre-CK. I have an occasional very, very minor pain in the spot about where I would place the AN to be in my head. I have felt fatigued, but cannot really pin down whether that was due to being on a steriod and made hyperactive during that time, getting little sleep due to the steroid and plans with the family during the whole week, especially a very early flight out of San Fran while staying in San Jose. I feel no balance related issues more than pre-CK, i.e. occasional slight dizziness when moving head or eyes quickly. I have no facial sensativity or facial nerve issues. So, only time will tell which of these symptoms I do have is really due to CK (or any treatment for an AN for that matter), which will last and which will dissipate, if at all.
I hope someone finds these logs helpful when his or her time comes. Good luck, Houston. Odyssey signing off.
