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A different kind of drama
It’s been quite a few weeks since I’ve blogged, and it’s not because there haven’t been memorable shows on stage around Fairfax. It’s because my mind has been elsewhere.
My youngest son, David, a freshman chemical engineering major at the University of Delaware, came home for spring break more than three weeks ago with a lump and swelling on the left side of his face. After searching the Internet, David diagnosed his discomfort as a jaw problem. He figured our dentist, Dr. James Gyuricza, would take care of it at his six-month checkup on April 3.
Dr. Gyuricza took one look at the lump and said David needed to see a doctor. A closer look revealed that David’s bite was way out of alignment and several of his teeth were loose.
We made an appointment with our family doctor, Tessa Cholmondeley, for the next morning. She examined David and immediately scheduled an MRI for that afternoon. The MRI indicated that David has a 6-cm. mass in his left sinus that has eroded his jaw bone and is pushing toward his middle ear, his eye and his brain.
Dr. Cholmondeley’s partner and our longtime friend, Gwilym Parry, met my husband Gene and me when the MRI was almost over. He told us the mass appeared to be well-defined and slow-growing and most likely would be treatable. But since a tumor of this type hasn’t been featured on “Grey’s Anatomy” or “House” (two of my favorite shows, by the way), Dr. Parry said he couldn’t give us a precise diagnosis. We welcomed the chance to laugh.
Five days later, David, Gene, our pastor Beth Neubauer and I were sitting in an exam room in the office of Dr. Kenneth Newkirk, a head and neck cancer specialist in Georgetown University Hospital’s Department of Otolaryngology. Dr. Newkirk examined David and asked him a lot of questions. I got the impression Dr. Newkirk wasn’t too happy with what he saw. He recommended that David have a PET/CT scan the next morning to assist Dr. Newkirk with the biopsy he proposed doing the following Tuesday. He suspected David might have a sarcoma.
At 5:30 a.m. this past Tuesday, David, Gene and I arrived at Georgetown’s surgical center for the two-hour biopsy scheduled for 7:30 a.m. Pre-op was going smoothly until the anesthesiologist asked David to open his mouth. The tumor has considerably restricted David’s jaw movement so that he has trouble opening his mouth very wide. The anesthesiologist was concerned that he wouldn’t be able to insert a breathing tube and might have to cancel the surgery. He also cautioned that he might break or knock out some of David’s teeth as he tried to get the tube in. My already-tenuous hold on my wits wobbled as my anxiety level ratcheted up.
Even though the surgery – performed up through David’s nose – proceeded as planned with no harm done to his teeth, it was the worst morning of my life. I’m squeamish anyway; I don’t like blood or needles. Because of the early hour, I hadn’t felt like eating breakfast. Compounding that was my paralyzing fear about what Dr. Newkirk would find. I was a wreck, nauseous and light-headed.
Wednesday and Thursday we waited. Thursday happened to be my birthday – not the sort of birthday I had anticipated. I didn’t have to think twice about what to wish for when I blew out the candles on my cake!
Friday afternoon we met with Dr. Newkirk again. He told us the preliminary pathology report indicated that the tumor is most likely a schwannoma, and schwannomas are “usually benign” – 90 percent to 95 percent are not malignant. When I heard those words, I felt like a balloon from which someone had suddenly let out the air. I had the feeling I was flying all over the room and came to rest, spent, on the floor. Also, the previous two weeks suddenly seemed to rewind in my mind like a videotape.
We’ll have the complete pathology report by the end of this coming week. In the interim, we have a consult scheduled at Johns Hopkins to see if the doctors there concur with the diagnosis and what they recommend for treatment. Dr. Newkirk said the standard treatment is either surgery or radiation. Before making a decision we’ll need to meet with a radiation oncologist and a neurosurgeon (a referral to Dr. McDreamy would be lovely right about now!).
Needless to say, I haven’t spent much time in the office and even less time reading emails about auditions and upcoming plays. It’s been impossible to focus on any dramas besides the one in our family.
The outpouring of love, support, prayers and concern we’ve felt from family, friends and co-workers has been overwhelming. We have been so blessed in that regard. There have been good-hearted people to help us every step of the way. We also couldn’t have asked for better care at Georgetown. The staff there – from Otolaryngology to Radiology to Out-patient Surgery – could not have been kinder or more accommodating.
Thankfully, David has taken everything in stride with confidence and an uncanny sense of humor. He actually posted his MRI photo on Facebook with a caption to inform his friends of what they’re looking at. He also decided to name the mass “The Trump Tumor,” in honor of his hero, Donald Trump. He said The Donald would be so proud because the tumor is “HUGE!”
Once David is on the road to recovery, I’ll return to my regular blogging. A lot of great shows are coming up this spring and summer. I’m very much looking forward to forgetting the surgical theater and turning my attention back to the community stage.
Please let us know the exact diagnosis when you receive it. In 2003, my then 18 year old son had a very similar experience, same location and similar size for the tumor, same behavior of the tumor ....and his turned out to be an ameloblastoma, an aggressive, non-cancerous tumor, which was treated with radical surgery.
He's now 22 and doing very well in graduate school. He had a bone graft done last August and we are hoping to have implant posts placed this summer to begin the replacement process for the teeth he lost from the surgery.
I relived that summer and the events since in his recovery as I read about your son. I pray for good news for you and a quick resolution for him. God bless you all.
Peggy
Posted by pdurant
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Peggy, thank you for sharing your experience with your son. I've just googled ameloblastoma, and it does sound very similar to what David has. I will ask the drs. about this on Monday. Was your son's tumor difficult to diagnose?
Lorin
Posted by S_Lbuck
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Lorin - I don't think it was hard to diagnose but there was a time lapse between knowing there was a mass and finding out what it actually was.
At first we were told it was probably a cyst as 99% of the time these are just harmless cysts. My son was having surgery to reconstruct his upper front jaw which had been destroyed in a bike accident when he was eleven years old (he had to wait until his skull/jaw was fully-grown to have the reconstruction). The tumor was discovered on the panoramic x-ray done in preparation for that bone graft surgery.
The "mass" was removed during the reconstructive surgery done about 2 weeks later. Then it took a few days for the pathology report to come back from the local pathologist. Then an additional few days for the ameloblastoma diagnosis to be confirmed by another pathologist in Pittsburgh.
From what I was told, the cells of an ameloblastoma are fairly distinctive in appearance (I guess if you are a pathologist that is...) but ameloblastomas are extremely rare (1% or jaw tumors of which only 1 in 10 is in the maxilla....so 1/10th of 1 percent chance that was what it was) so most pathologists don't come across that many in the course of their work.
The thing that struck me about the description of your son's tumor is the "eroding the jawbone"...amelos dissolve or erode everything they touch - bone, teeth, tissue, etc. That is why they often get so large before being discovered, taking over/dissolving tissue instead of building up pressure by growing along side of other structures.
I didn't want to frighten or alarm you, it just sounded so similar. It may be that other types of tumors do the same thing, I don't know. I'm sorry you have to wait until Monday to find out more. I hope you have good news then.
If nothing else, regardless of what type of growth it is, I have been through what you are going through now. There were people who had been through similar things who helped me when I was desperate for information and assurance that we would get through it somehow. Please feel free to email me privately if there is anything I can do to help - pdurant@atlanticbb.net
Peggy
Posted by pdurant
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I've been thinking about you and David and wondering how things are going.
Peggy
Posted by pdurant
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Peggy, I sent you an email several days ago. I hope you got it. We're still waiting for a diagnosis and can't really proceed until we have one. I've written two subsequent blogs with updates, if you want to read them.
Thanks for checking in!
Lorin
Posted by S_Lbuck
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