When I last sat down to post, I was preparing for a biopsy of my parotid gland. Is it benign or malignant? Well, tomorrow is my surgery but that’s not much of a hint. They were going to take it out, excise it regardless. We drove downtown that morning to the IU Health Medical Center, the place where I work. Earlier in the week I had sped up the whole process by going down to the basement area and tracking down one of the techs. Yes, she said, a radiologist had looked at my CT scan and approved a ultrasound-guided fine needle asperate of the mass on my main salivary gland. The tech went ahead and made an appointment for me, bypassing my surgeon’s office and the central scheduling department. The perks of membership (in the healthcare culture)!
She said I would need conscious sedation, a little cocktail of fentanyl and versed, as that area of my face was criss-crossed with nerves and they didn’t want me moving. So here we are, back in the basement, Tish and I because I wouldn’t be allowed to drive home. The pace was efficient, a few minutes in Registration, then down to the radiology waiting area. Whoops, you’re getting sedation. You go to a special area. Good luck from Tish. I am led to a small dark room by a tech I met last week. I slip into a gown. There is a cool blue glow from the lighting. As he was starting my IV site, the room started to fill with strangers milling in the shadows – a perky young resident radiologist describing in detail the imminent procedure, two medical students, a pathology tech, and briefly, a pathologist.
I was surprised they only use a 25 gauge needle. This is pretty tiny, much smaller than I you were getting a flu shot. I use these when giving sub-q (just under the skin) injections to my clinic patients. They will take a few samples, send them out of the room to be viewed, determining if these are good enough for analysis or not. The back to take a few more. Of course in a few seconds I will be unaware of this. It will all be like a hazy dream state. Actually unaware is not accurate. I will be aware in the moment. I will feel any pain or uncomfortable sensations. I will respond when they ask to me turn my head. I may even respond to questions though I will appear a little drugged. But the first real awareness, the first real memory that will not instantly float away, will come an hour later in the recovery room. A nurse tells me the procedure is complete. If I want to, I can sleep for another hour before I can be discharged.
It’s time to go. Tish is there. My legs will remain a little wobbly for the next few hours, the world a little hazy. So now we’re back to waiting. This is Tuesday. I know pathology takes a few days. By Friday I haven’t heard anything so I have another clinician at my hospital, look up the path report on computer. I am telling her that, since the tumor involves the gland itself, I have an 80% chance of it being benign. I am saying this as I am reading the first phrase in the results paragraph. I am reading the words “poorly differentiated carcinoma” but it is only when she comments that “unfortunately yours is malignant” that I comprehend what I just read, though I know this means cancer.
It is Friday afternoon late. I want to set my followup appointment as soon as possible. So I call the ENT’s office. She gives me a date the Monday after next week. Ten days! I think as I hang up the phone. Tish calls me at work a couple of hours later. What did you find out? As a matter a fact I was just getting ready to leave so we can talk when I get home. At that moment she knew, she’ll tell me later.
Poorly differentiated is not good. Well differentiated would have been better. Well differentiated would have meant that my cells looked basically normal, just a little off here and there. Poorly differentiated mean they are a mess, a jumble of scrambled cell material. Poorly differentiated also means a high grade cancer. Not good. After some quick reading I discover high grade means that I will likely need radiation therapy. It may also mean I need a neck or lymph node resection.
The weekend is long and anxious. On Monday I call the ENT office and leave a message with the surgeon’s medical assistant. My results show a high grade carcinoma. Perhaps I could get an earlier appointment? Later Monday evening, after I get home from work, I find a message. My new appointment is this Friday. This is a long week. We do a lot of searching on the internet. Some of it sobering. I talk with friends, radiation nurses. It looks like I will have another opportunity to loose some of that “winter weight.”
Friday arrives. We go up to IU Health North, a suburban branch to our burgeoning state-wide healthcare network. (a little TV trivia here, a shot of IU Health North appeared in this week’s episode of Parks and Recreation, series Ann delivers her baby there.) A nice clinic room on the fourth floor, overlooking the Atrium and the just launched Cancer Resource Center. The physician’s presentation is short and to the point. I don’t know whether his presentation had been amended in consideration of my status as a nurse and my foreknowledge of the diagnosis of cancer. I wonder if it would have paced differently if I were a naive “civilian.”
Basically we are looking at a parotidectomy and a modified radical neck dissection, removal of 10-12 lymph nodes in my neck because of the possibility of microscopic disease in those areas. Six weeks of radiation is a given. Any discussion of adjuvant chemotherapy will depend upon the final pathology examination of the surgical specimens from the gland and lymph nodes. He leaves and the medical assistant arrives with pre-op instructions and the surgical schedule. First open date is April 9. This would allow us to attend my nephew’s wedding in Charleston, South Carolina. But isn’t that a bit long to let that high grade cancer sit multiplying in my jaw?!
The surgeon will see if he can juggle his schedule over the weekend. Another long weekend. We need to make plans for the wedding trip. Tish and I are driving down. My mother, who has been living with us these past two years due to progressive Altzheimer’s disease, will be flying down with my sister. Reservations have already been made a this resort-place.
Another late afternoon massage on Monday. The new surgery date is March 24 – tomorrow as I am writing this. This is a longgggg week. I talk with my colleagues at work, my manager. I begin preparations for FMLA leave, for short-term disability. I send out emails to everyone involved in my patient and family cancer education project. I clean out my locker, straighten up my little cubicle on the administration floor, writing in block letters on the white board “GONE FIGHTIN’ CANCER! my own!” I post an annoucement on Facebook, post a short essay on the nurses discussion forum on the network intranet. A few days later I receive a comment to my post – a nurse says that she seldom reads the forum but just happened to that day. She works pre-op at IU North, and she is working the day of my surgery. She thinks highly of my surgeon and looks forward to meeting me.
To everyone I seem to be taking this well. I guess that I am. After all, I have been through this before. This is my fourth dance with cancer, I tell people. My first time was with a cancer with a deadly reputation – T-cell prolymphocytic leukemia, then my relapse two years later. I am now counting as three my scare last summer with pancreatic cancer. I had my spleen and half my pancreas removed. A major surgery with six weeks recovery. That pathology did reveal a degree of dysplasia. I consider myself a survivor in much the same way as women with BRCA gene mutations who elect to have a mastectomy.
Certainly there is not the shock and awe, the anguish and fear of the first time. I was younger then, with more to lose. I am older now, much older than I ever hoped I would be when I was first diagnosed with leukemia 13 years ago. Still this new diagnosis hangs over me like a shadow, like an invisible, dense weight. Most days I have been anxious, anxious to have the surgery and get it over with. I am not anxious about the surgery, about the anesthesia, about the discomfort afterward. I just want to get on with it. My anxiety this weekend has been quieter, moving to the back corners of my mind.
It has turned cold again after a teasing taste of spring-like weather. The arrival of Spring coming aside the diagnosis of a new cancer can seem like a cruel promise. You just ride it out. People will call you a hero. You just ride it out the best you can. That’s what you do. People will call you a survivor. Some don’t like that term. It is not about who we are. It’s about where we have been.
Talk to you after surgery, Dennis