Wednesday, March 18, 2015

Mark my words

It has been five weeks exactly since I had my second direct laryngoscopy to remove papilloma from my vocal cords.  At the time, the ENT indicated that this didn't look to be recursive and he was simply removing the papilloma that he was unable to reach during the first procedure in October.  I was very cautious in this prognosis since my ability to speak rapidly declined around Christmas and it seemed as if the virus has aggressively come back.

Just two weeks after this latest surgery, I was removed from voice restrictions and permitted to talk.  That doesn't mean that I was able to talk.  Rachel and I both could tell right away that things were different this round; I was still wheezing and passing air directly through the laryngeal inlet and my vocal cords were still not coming together.  This could only mean that despite the initial words from the ENT that the procedure went well, that either the virus had once again come back aggressively or that he actually did not remove all of the growths.  Oddly enough, even though the local ENT in Huntsville indicated that this would most likely not return, he suggested we see a specialist in Birmingham at UAB, just in case.  You can imagine our confusion; he was saying that it would not come back but that we should see a specialist anyway that focuses on prevention.  We refused to speculate since the follow up appointment was not until today, five weeks after the surgery.

In the mean time, Rachel has been feverishly researching laryngeal papillomatosis and found a lot of research on the virus.  The specialist at UAB is one of the best in the country at remediation as well as prevention through certain medications and direct injections into the vocal cords, both of which can be done in his office and doesn't require anesthesia.  Our only problem was that it would be nearly two months after surgery until we could see the specialist, all the while I still can't talk.

So we both have been very frustrated and angry.  Frustrated and angry that we were not given the correct diagnosis and not referred to the specialist in January.  I could be on my way to remission and recovery now, instead of looking at another procedure.

We both went into the appointment today with questions but tried to contain our frustration.  When the ENT asked how I was doing, in a raspy whisper I said, "I am hoping you can tell me," indicating that my voice had made no improvements since before the surgery.  To my dismay, he did not seem surprised at all; I thought that we would be taken aback at least a little, but this only reconfirms that maybe he has suspected all along that he knew this would reoccur but never clearly communicated it to us.

After another round of sticking the scope down my throat, he confirmed the aggressive regrowth of the virus on my vocal cords, which was obvious to us, given zero progress made on being able to talk since the last surgery.  This is when Rachel did what she does best; she politely got into his face and expressed our frustration and concern.  She has been my voice through all of this and more importantly, my rock of stability.  She asked if the ENT could escalate the appointment with the specialist, to which the ENT indicated that he would call right away.  Its great news that (hopefully) we will get into see the specialist before the scheduled March 30 appointment; its just unfortunate that it took 5 weeks and another visit to the ENT to get there.

So for now we remain patient and await the scheduling of the appointment.  We are very optimistic that the experts at UAB can help us return to a normal life.  That they can bring sound back to my vocal cords.

Everyone I "talk to" has been so nice and thoughtful.  Just tonight I was on a walk with the dogs and stopped to talk to my friend Tracy Bagwell.  Before I could get out a "word" he immediately asked about the dogs then onto my health.  I have been running with Tracy for some time now and he has known me through several injuries and comebacks.  This past weekend after finishing up my pacing duties at the Scottsboro Half Marathon, I ran back out on the course and found him with just a mile to go.  We ran together almost to the finish; later he would tell me that it was one of his faster miles, even as he struggled with the difficult course.

It is people like Tracy, that have made more bearable.  People that show genuine concern over my health and wellbeing.  Yes it is still painful when I talk for more than a few minutes.  Yes it is painful when my vocal cords dry out and I can't breathe.  Yes the blockage in my windpipe makes it more difficult to breathe.  But, I am still very active and healthy and doing everything I can to remain positive, with the help of Rachel and my friends.

You will never know what it is like to not be able to talk and I hope that you never have to know.

I am going to talk again someday.  You can mark my words.