I was pretty psyched about two weeks ago when I had four appointments in two days with four different specialists. They were all going to help me in specific areas. And I needed help in those areas. Therefore I was happy, even excited, at the prospect of getting some help.
Appointment #1, with a lymphedema therapist. Yes, her speciality is therapy for lymphedema. That apparently is what I have in my neck. Most of it will go away, or at least some of it. It’s been frustrating enough that I’ve had this hard, numb, lump on my neck that I decided to go to a specialist. The first meeting was spent telling her “my story,” so it was mostly a waste of (my) time. The next meeting she says she will get into trying to get the fluids to flow. Whatever. I’ve been trying to do that for weeks. Then again, I’m not a specialist. I haven’t been back since due to schedule conflict. But now that my story is out of the way, maybe we’ll make some headway next visit.
Appointment #2, with a general surgeon with a speciality in the gastronomical area. Why a surgeon? A soft lump appeared about two weeks ago right above the PEG hole area. Result? Apparently I have a PEG hole hernia. The head & neck surgeon (who stitched the hole two months ago) had never seen one. He recommended me to the general surgeon. So, as if all this other stuff hasn’t been fun enough, I’ve got to go back into surgery and get this hernia in my stomach taken care of. It could either be a piece of fat or part of the stomach. What they don’t tell you when you get a PEG tube is that the stomach gets yanked up smack into the abdomen wall and after the tube is yanked out, it kind of sticks there. Surprise. The surgeon said it could be easy or complicated; he won’t know until he gets in there.
Appointment #3, with an ENT specialist who analyzes weird stuff. He was recommended by the general Md. for the ringing in my ears. He had a base line test done on my hearing and it was just as he thought. My hearing is ok, I’ll just have to live with the ringing until it gradually goes away. The best thing I can do, he says, is to not get in quite places or situations. He says to keep the TV on or the radio, or Ipod, or something. But I should have other noise to help drown out the ringing. Nice. At least I live in NYC.
Appointment #4, with Dr. Rad. He scoped my throat (through the nose) and said I still have a low lying yeast infection. More antibiotics for 14 days. He could also see that I was very sore. Why do I have so much pain two months out when at day 24 it should have been behind me? Oh, everyone responds to treatment differently.
Conclusion: After the four visits in two days, I felt somewhat deflated. For some reason, I expected more. Nothing against specialists. It was my own fault for setting expectations a few notches higher then they should have been.
The fact is, right now, two months after brachytherapy radiation, when I’m supposed to be on the road to recovery, it feels like I’ve taken a giant leap backwards. Since landing on the 13th on this trip, all the symptoms have gotten progressively worse.
Again, this is not a complaint. This is not about seeking violin music. This blog is a record of the process–the only spot where I’m cataloging the process–for whatever it’s worth.
A week ago, I could eat soft food. Today, I can only drink. And drinking is a chore. A couple of months ago, I was musing on how I couldn’t go anywhere without a bottle of water. Now, the pain of swallowing makes satisfying the dryness not worth the effort. Something is not right. The searing pain running through the head, jaw, throat, mouth, ear, and neck, makes the thought of living free of head pain a form of nirvana.
And maybe it’s all a good lesson. Who knows. Not the four specialists. But I will see them again. Until then, I’ll continue life as I know it and try to fake myself out somehow that it really doesn’t hurt so much.