Back to Square One

I apologize to those of you who were expecting an update yesterday. I've actually had news since Monday night, it's just that it is so insignificant that I could hardly bear the thought of updating.

Basically, I was referred to another specialist. The Goshen doctors feel like they simply cannot make any recommendations without knowing whethere they are dealing with scar tissue or disease tissue. The biopsy is a risk they are not willing to take (I get the impression that some of this is related to liability issues). They do feel that the type of biopsy I would require needs to be performed by someone with extensive expertise/experience in dealing with the nerves. The team recommended Dr. Everett Vokes. He's at University of Chicago Hospital. Dr. Wheeler commented that he is "the best head and neck cancer specialist in the United States." I've looked up Dr. Vokes and he's got a great resume. He specializes in some treatments that could be really beneficial to my case and his secondary area of expertise is lung cancer (which is benefical in my situation as ACC tends to metastize to the lungs when it re-appears around the 10-year mark).

Ultimately, there is likely going to be some major surgery in my future. The team wants me tol have the best possible surgeon -- whether it be to do the biopsy or to resect the scar tissue. Of course, I totally agree. My frustation is that I've supposedly seen three of "the best in the United States." They can't all be the best can they? I mean, my first consulation was with Dr. Panje in Chicago. He offered to see me again post-radiation and give me further advice -- particularly if surgery became an option. I think he would simply make a referral to a surgeon, though. It is actaully a surgeon who was recommended by the Porsches (a Memorial volleyball family whose daugther had some growth in a similar location and had an incredibly successful surgery) Dr. Luu (my California doctor) is in the process of looking at all my tests and telling me his recommendationl. When I was in California, though, he told me that there is only one surgeon in the United States see -- this guy is located in Arkansas (or some other obscure state that may not really exist). How the heck are all three of these guys the best in the United States? I think there should be an oncology pageant or something. Give one doctor a crown, send me to him, and let's call the rest finalists. So, I'm going to call this doctor and ask some questions, but ultimately, I think we are at a standstill for months now. Defintiely nothing happening before Christmas.

Meanwhile, I am really struggling with steroids. For the most part, the steroids have been easier this round than last spring. I can definitely identify the negative side effects, but they have not debilitating. The sleep issue has been the worst. I think the loss of sleep is what is actually exacerbating my eye and perhaps causing my face to digress a little more. I get annoyed at minor things more easily and am perhaps more honest than normal, but last round incited many fights with Corlissa and a lot of hurt feelings. I have not had that issue this time and don't think I've been as "bitchy" as I was then. The biggest annoyance is the physiological drive to be in perpetual motion -- either talking or doing. I cannot shut my mouth (I'm annoying everyone around me) or stop moving. In some ways, that brings with it some positives.

I've asked Dr. Wheeler about the possibilty of going off the steroids. Dr. Wheeler basically flat out told me that I could not stop taking the drugs (he is usually more open to discussion about the topic) In fact, he was hesitant to let me change doses or start taking only two doses. His only concession was that I could take my last dose at 3:00 PM instead of with dinner.

However, the last few days have brought on some concerning changes. My face has really swollen in the last two days, my eye is going crazy, my equilibrium has been off (I have had two or three episodes of dizziness which has actually caused my equilibrium to be off to the point where I look like a drunk walking), and I've become more forgetful/clumsy (this was a major problem last spring but I had not been experiencing it until this weekend when the other changes started). My gut instinct is that my body is just crashing due to lack of sleep. I think that is the reason the side effects are really intensifying. On the bright side, my system crashing has forced me to sleep. Anyway... last night I finally slept. I slept from 1:00 until 5:30 this morning. I probably need to see if I can simulate this again for a few days and see if the side effects become more manageable but ultimately I am left wondering what to do if something does not change.

My biggest request is prayer regarding sleep. If I could find some happy medium with sleep, I truly believe the steroids would become a non-issue. I believe that my physical symptoms would probably be more manageable as well. I did ask about the possibilty of some sleep aid coupled with the steroid, but Dr. Wheeler says that is not a good idea. I need pray and am open to all suggestions.

Secondly, I ask you all to pray for guidance regarding my next step and finding the doctor who will ultimately be my surgeon. I trust Dr. Wheeler and have no hesitation with any recommendation he makes. If I have to choose between two of the best and one is in Chicago, the other in Arkansas. The choice will be easy. But I feel like there is a third choice on the table and that leaves me deciding between two surgeons who are both in the Chicago area. I would love it if there was some clear sense/guidance in this matter!

Sorry to make you all wait for more of the same "we still dont' have anything concrete" news.