I posted this on the Parotid Tumor Patients Forum on April 20th as a sort of idle thought, and was surprised at the positive response. As of today 182 have viewed it on the forum, and several people have posted comments there telling me they found it encouraging. We forget sometimes how powerful it can be to strive to bring a sense of perspective to our problems.
In ancient times the Romans were traumatized by the advance of Hannibal and his army, who crossed the Alps with their war elephants and swept down the Italian boot, gathering supporters and making alliances with the Cisalpine Gauls and other Northern Italian tribes, until Rome itself was threatened. The Roman legions, called from levies upon the young men of all of Rome's citizens and the surrounding towns, met Hannibal in battle and were destroyed in the battles of Cannae and Lake Trasimene. These battles, which were every bit as destructive of Rome's youth as World War One was of the youth of France, Britain, and Germany, became legendary in Roman history for the presence of the elephants, and ever after, throughout Western European history, a youth's first encounter with war was referred to as "seeing the elephant".
Sometimes I think I'm getting ready to face the elephant. I'm not new to it. I've had five surgeries, and one of them was a total parotidectomy, but somehow it all feels new again to me, this knowledge that in a few months I'll be setting off for Johns Hopkins, watching them set up the IVs and knowing that soon I will be asleep and when I wake up I'll be uncomfortable and my face will be swollen and my abdomen will be sore (please, God, let it be smaller ... I can TAKE smaller), and I'll be facing recovery once again from facial paralysis and surgery. And in the wee, small hours of the morning sometimes this prospect frightens me. Last night I had the very difficult task of telling my 87 year old mother that the struggle continues, and I am once again going under the knife. But then I remember that I have wonderful friends and a loving family. I remember that I have three beautiful children, all of them adult or darn close to it, who will be there to greet me when I wake up. Right now they are all three of them beautiful and healthy. Isn't that what I always say I want? I remember that I practice in a jurisdiction where the judges are downright protective of their lawyers and will do anything to make sure that nothing averse to either client or lawyer happens as a result of this surgery. I remember that I live in a great country, that I have access to spectacular medical services, that I have lived 50 years and the issues which might have concerned me very much 25 years ago concern me a lot less now, because the older we get the less it matters to us how someone looks or whether someone might be a little plump or their skin might be a bit wrinkled. With age has come the realization that the important things are the quality issues - my family, my friends, my opportunities, and the beauty that surrounds me every day.
I'm just saying ...
So maybe I face the elephant again. But the elephant to me is not an unknown and it is not a mindless terror. It's something I can handle.
Monday, April 28, 2008
Monday, April 7, 2008
Boppin' Up to Hopkins
Cross-posted to the Parotid Tumor Patients Forum
This morning I arose early, put particular vigor into screeching my 17 year old out of bed so he could get to school on time, gassed up the clunky SUV (sixty four bucks?!! Sonofa%!#*$%3$Q$#*@ gas prices!), picked up my friend Nora from the office, and headed up the road to Johns Hopkins Medical Center in Baltimore, Maryland.
We arrived a full hour ahead of the appointment time, which gave us the needed 15 minutes to find a parking space in the crowded garage. The pre-registration clerk took me immediately, looked up my name and information, took a photocopy of my insurance card, issued me an orange card with my name and medical records number, and directed me to the 6th floor.
I checked into Otolaryngology and was handed several forms to fill out. One form tried to assess how much I use my voice and asked me to rate myself on a scale of 1 to 7 for talkativeness. Nora suggested I create an 8th category called "Carla" and circle that. Ah, Nora, such a help. Another one asked a number of questions aimed at determining my mental health status. This is a sensible step which allows for early psychological intervention for depression. We decided I'm not depressed, just delusional, and handed in the completed forms.
We were then escorted to a very cold examination room to wait for the doctor. Apparently the HVAC isn't totally under control in this old building, but fortunately they were dealing with a couple of menopausal women prone to hot flashes so the situation wasn't as bad as it could have been. A nurse came by, apologized, and politely explained that the doctor had been delayed. Sometimes delay can't be helped, but little touches like this help make things easier.
After a long while another nurse entered and said she was going to spray something up my nose to make the doctor's exam easier. Alrighty then, after six of these stupid tumors over almost four decades someone has come up with something I haven't heard of before. She sprayed something up my nose, and then sprayed something else up my nose. The front of my nose became numb and my throat began to feel sore. Think drunk dentist run amok with a shot of novacaine, hitting the nose instead of the gum.
After a while longer the doctor came in. I was immediately impressed with her manner. Naturally, after asking me whether I'd ever had any problem with my nasal cavity and being told no she said she didn't need to do to my nose whatever it was the nurse had sprayed my nose for. A numb nose for nothing - the story of my life.
After interviewing me, examining me, reviewing my file, and expressing delight with the very detailed internet appointment form I'd filled out, she invited us back to a computer to look at the MRI. Just an aside on that form: If a prospective patient fills it out thoroughly, referring back to documentation and including all important details, it provides an excellent supplement to the in-person interview with a doctor.
The doctor did the usual poking and prodding, at one point asking me what the small mass on my jaw was. Hoowhee! Found another one. This lady has some excellent hands because even after being shown exactly where the lump is I have trouble palpating it.
At the computer we looked at my MRI. The doctor ran several frames up and down and explained carefully exactly what she observed. She described the tumor as more a cluster or clump of tumors, and then, upon closer review, pointed out the tell-tale white circle indicating another pleomorphic adenoma on my jawline. She explained that PAs show up quite white on contrast MRIs. Makes me wonder why doctors don't order contrast MRIs more often in such cases. She also pointed out the huge emptiness on the left side of my head (hey, no wise guy remarks here!) and described how the muscle flap for my 1983 parotidectomy had been fashioned to make my appearance more even. I do have a cavity along the left side of my face and neck, but it's so artfully covered that it's not too visible to casual observers. To me it's still a great big hole in the side of my head. Dr. Gourin answered all our questions, cycling through the slides to make her points, and then returned with us to the refrigerator, um, exam room, to discuss my options.
She recommended that I have surgery with complete dissection of the facial nerve. She fingered the scar which stretches down the side of my neck and said she believed the entire scar needs to go, that something about the way it looks and feels along my neck bothers her and it may be contributing to my problem. She proposed a facelift incision, resection of the entire scar, and repair of the cavity through use of a large chunk of fat from my abdomen. For the first time Nora looked a little envious. Instant tummy tuck - woohoo! Dr. Gourin also proposed that once she dissected the entire facial nerve she irrigate the area through a procedure the name of which I can't recall. It's late, so I'm not going to call Nora and ask her if she remembers.
The doctor told me she does not recommend a nerve graft, but warned that the dissection and irrigation will result in nerve weakness from which it is hoped I will recover. I told her I'd actually experienced the same problem after my total parotidectomy and she found it a hopeful sign that my recovery from that procedure was so complete.
After Nora and I got some proposed surgery dates from the scheduler, Dr. Gourin had us go to her office so we could observe some photos of the procedures she was describing. Getting past the ick factor, these photos were fascinating. The facial nerve branches out like a hand and is easily observed just past the skin. One reason Dr. Gourin proposes the fat insert is to provide some cushioning between skin and nerve. She was astounded that I've been through five surgeries with incisions right along the path of the nerve and never suffered any serious damage, not even when my last two surgeons resected their incisions. She showed some photos (with the eyes and upper parts of faces blocked out for privacy) of people on whom she's done the nerve dissection/fat insertion procedure. Wow! Almost no difference on either side of the face. It's very difficult to see what side the surgery was on. She said a medical journal article will be published soon on the results of this work, so within the next few months this information will be available to everyone.
I asked Dr. Gourin about the harmonic scalpel. She loves this instrument. It seems that when she was enticed away from Georgia by Hopkins (they recruited her), the first thing she asked for was a harmonic scalpel. For those who haven't read my previous posts this is a scalpel which stops bleeding through ultrasound rather than through cauterization or clamping. This allows for a cleaner surgical field, closer work on the nerve, and minimizes inflammation. Moreover, she reports that it cuts (heh) about an hour off the surgery time.
She expects the surgery to last about 5 hours and estimated two days in the hospital unless I was dead set on going home, but that if I insisted on going home I'd need someone capable of assisting me. Naw, I think I can tolerate a couple of days in the hospital where the cat and dog can't find me and crawl all over my abdominal incision while trying to claim me from each other. It looks like we'll be doing this some time in June or July to give me time to arrange for about a two to three week gap in my schedule. Of course, the problem for me is my ability to speak and be understood and appear in public. I'll have to work around it somehow and hope I have a recovery as good as the one I had in 1983.
This morning I arose early, put particular vigor into screeching my 17 year old out of bed so he could get to school on time, gassed up the clunky SUV (sixty four bucks?!! Sonofa%!#*$%3$Q$#*@ gas prices!), picked up my friend Nora from the office, and headed up the road to Johns Hopkins Medical Center in Baltimore, Maryland.
We arrived a full hour ahead of the appointment time, which gave us the needed 15 minutes to find a parking space in the crowded garage. The pre-registration clerk took me immediately, looked up my name and information, took a photocopy of my insurance card, issued me an orange card with my name and medical records number, and directed me to the 6th floor.
I checked into Otolaryngology and was handed several forms to fill out. One form tried to assess how much I use my voice and asked me to rate myself on a scale of 1 to 7 for talkativeness. Nora suggested I create an 8th category called "Carla" and circle that. Ah, Nora, such a help. Another one asked a number of questions aimed at determining my mental health status. This is a sensible step which allows for early psychological intervention for depression. We decided I'm not depressed, just delusional, and handed in the completed forms.
We were then escorted to a very cold examination room to wait for the doctor. Apparently the HVAC isn't totally under control in this old building, but fortunately they were dealing with a couple of menopausal women prone to hot flashes so the situation wasn't as bad as it could have been. A nurse came by, apologized, and politely explained that the doctor had been delayed. Sometimes delay can't be helped, but little touches like this help make things easier.
After a long while another nurse entered and said she was going to spray something up my nose to make the doctor's exam easier. Alrighty then, after six of these stupid tumors over almost four decades someone has come up with something I haven't heard of before. She sprayed something up my nose, and then sprayed something else up my nose. The front of my nose became numb and my throat began to feel sore. Think drunk dentist run amok with a shot of novacaine, hitting the nose instead of the gum.
After a while longer the doctor came in. I was immediately impressed with her manner. Naturally, after asking me whether I'd ever had any problem with my nasal cavity and being told no she said she didn't need to do to my nose whatever it was the nurse had sprayed my nose for. A numb nose for nothing - the story of my life.
After interviewing me, examining me, reviewing my file, and expressing delight with the very detailed internet appointment form I'd filled out, she invited us back to a computer to look at the MRI. Just an aside on that form: If a prospective patient fills it out thoroughly, referring back to documentation and including all important details, it provides an excellent supplement to the in-person interview with a doctor.
The doctor did the usual poking and prodding, at one point asking me what the small mass on my jaw was. Hoowhee! Found another one. This lady has some excellent hands because even after being shown exactly where the lump is I have trouble palpating it.
At the computer we looked at my MRI. The doctor ran several frames up and down and explained carefully exactly what she observed. She described the tumor as more a cluster or clump of tumors, and then, upon closer review, pointed out the tell-tale white circle indicating another pleomorphic adenoma on my jawline. She explained that PAs show up quite white on contrast MRIs. Makes me wonder why doctors don't order contrast MRIs more often in such cases. She also pointed out the huge emptiness on the left side of my head (hey, no wise guy remarks here!) and described how the muscle flap for my 1983 parotidectomy had been fashioned to make my appearance more even. I do have a cavity along the left side of my face and neck, but it's so artfully covered that it's not too visible to casual observers. To me it's still a great big hole in the side of my head. Dr. Gourin answered all our questions, cycling through the slides to make her points, and then returned with us to the refrigerator, um, exam room, to discuss my options.
She recommended that I have surgery with complete dissection of the facial nerve. She fingered the scar which stretches down the side of my neck and said she believed the entire scar needs to go, that something about the way it looks and feels along my neck bothers her and it may be contributing to my problem. She proposed a facelift incision, resection of the entire scar, and repair of the cavity through use of a large chunk of fat from my abdomen. For the first time Nora looked a little envious. Instant tummy tuck - woohoo! Dr. Gourin also proposed that once she dissected the entire facial nerve she irrigate the area through a procedure the name of which I can't recall. It's late, so I'm not going to call Nora and ask her if she remembers.
The doctor told me she does not recommend a nerve graft, but warned that the dissection and irrigation will result in nerve weakness from which it is hoped I will recover. I told her I'd actually experienced the same problem after my total parotidectomy and she found it a hopeful sign that my recovery from that procedure was so complete.
After Nora and I got some proposed surgery dates from the scheduler, Dr. Gourin had us go to her office so we could observe some photos of the procedures she was describing. Getting past the ick factor, these photos were fascinating. The facial nerve branches out like a hand and is easily observed just past the skin. One reason Dr. Gourin proposes the fat insert is to provide some cushioning between skin and nerve. She was astounded that I've been through five surgeries with incisions right along the path of the nerve and never suffered any serious damage, not even when my last two surgeons resected their incisions. She showed some photos (with the eyes and upper parts of faces blocked out for privacy) of people on whom she's done the nerve dissection/fat insertion procedure. Wow! Almost no difference on either side of the face. It's very difficult to see what side the surgery was on. She said a medical journal article will be published soon on the results of this work, so within the next few months this information will be available to everyone.
I asked Dr. Gourin about the harmonic scalpel. She loves this instrument. It seems that when she was enticed away from Georgia by Hopkins (they recruited her), the first thing she asked for was a harmonic scalpel. For those who haven't read my previous posts this is a scalpel which stops bleeding through ultrasound rather than through cauterization or clamping. This allows for a cleaner surgical field, closer work on the nerve, and minimizes inflammation. Moreover, she reports that it cuts (heh) about an hour off the surgery time.
She expects the surgery to last about 5 hours and estimated two days in the hospital unless I was dead set on going home, but that if I insisted on going home I'd need someone capable of assisting me. Naw, I think I can tolerate a couple of days in the hospital where the cat and dog can't find me and crawl all over my abdominal incision while trying to claim me from each other. It looks like we'll be doing this some time in June or July to give me time to arrange for about a two to three week gap in my schedule. Of course, the problem for me is my ability to speak and be understood and appear in public. I'll have to work around it somehow and hope I have a recovery as good as the one I had in 1983.
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