It's always tease, tease, tease
You're happy when I'm on my knees
One day is fine, next day is black
So if you want me off your back
Well come on and let me know
Should I stay or should I go?
With so many unknowns about an upper left lung lobectomy and my cancer in general, I went looking for answers beyond the offices of my oncologist and surgeon.
Opinions from a handful of unrelated medical professionals including two surgeons and an oncologist agreed that a lobectomy would be radical, given all the unanswered questions about my cancer. They leaned towards testing to confirm whether or not the other cancer is lymphoma and a PET Scan in a few months to see what was happening in my lung.
So, I cancelled my surgery, which was supposed to happen last Monday. The real reason, truth be told, is that I was terrified about being cut open and having most of my lung hacked out. Scared of the pain that I would suffer in the months-long recovery. Scared that I might be left dragging around an oxygen tank. Scared of not being able to look after myself, physically and financially. Scared of loss of dignity and loss of independence. But mostly, scared of the pain.
I've had enough, and I have always believed that quality is much more important than quantity, especially in life. There's no guarantee that surgery will cure me, and I think I'd feel pretty silly if I had the lobectomy and a few months down the road, the cancer's back. So, I cancelled the surgery.
Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
An’ if I stay it will be double
So come on and let me know!
My surgeon, Dr. Evans, like most other surgeons, has a receptionist/secretary, office worker type of person, and she took the call. I met her once, at my first and only visit to Dr. Evans' Vancouver highrise office. She was sitting behind a big, dark oak desk in the office with "Dr. Evans, Thoracic Surgeon" on the door in a tastefully understated nameplate.
I had no reason to assume she wasn't Dr. Evans, especially when I said, "It's nice to meet you, Dr. Evans," and she didn't correct me. When she sent me to an examination room and a man entered, I assumed he was an assistant. I was surprised when he introduced himself as Dr. Evans. Husband and wife team? Nope. Anyway, that never did sit well with me, and I'm still not sure what her name is.
It was her I spoke with when I called to cancel my surgery.
"You want to cancel the surgery?" Given her how-dare-you tone of voice, she might have been asking if I was going to travel to Haiti to have the evil spirits voodooed out of me by a witch doctor.
"Yes, I want to cancel." Just in case she didn't hear me correctly the first time.
Her response shocked me. She laughed, but it wasn't a happy, warm sound. It was that forced and phony, deliberately exaggerated laugh you hear when someone is doing their best to convey that you are an idiot whose opinion is so patently stupid that you're not even worth talking to. The kind of disrespectful response that, had I been in the office rather than on the other end of the telephone, might have earned her an enthusiastic backhander.
Instead, in the calmest tone I could muster, I said, "I'm glad you can see the humour in the situation."
"Well!" she sputtered, "It's a lot of work to set these things up," and heaved out a theatrically loud sigh of exasperation before hanging up. Perhaps she's overworked, underpaid, unappreciated, or maybe she suffers from PMS From Hell and I got her on a bad day. I'll give her the benefit of the doubt. No one, especially in her field, could be that lacking in compassion without a good reason.
Anyway, I cancelled my surgery. I'd rather have a couple of good years than a decade of agony.
This indecision’s bugging me
If you don’t want me, set me free
Exactly who I’m supposed to be
Don’t you know which clothes even fit me?
Come on and let me know
Should I cool it or should I blow?
Dr. Evans called me that same day. He was understanding, patient and disappointed. He believes that I am taking a great risk by hanging on to that lung tissue that may be harbouring microscopic cancer cells eagerly waiting to run rampant and metastacize in my brain and liver.
The surgery could cure me, not having it could kill me. On the other hand, February's wedge resection surgery could have cured me and the lobectomy could kill me. I'm seeing that lobectomy as the equivalent of treating gangerine in the end of a toe by amputating the whole freakin' leg.
The surgery could cure me, not having it could kill me. On the other hand, February's wedge resection surgery could have cured me and the lobectomy could kill me. I'm seeing that lobectomy as the equivalent of treating gangerine in the end of a toe by amputating the whole freakin' leg.
On Wednesday, I got a call from Leanne, my general practioner`s receptionist. I like Leanne. She`s professional and efficient, but always friendly. Dr. Ingrey wanted to see me, and we set up an appointment for Friday. Oops, busted.
When you walk into a doctor`s office, they always ask how you are, and people automatically respond, "Fine thanks," or the equivalent. It`s become a meaningless question with a meaningless answer, but the doctor really does want to know how you are, unlike the acquaintance at the grocery store. Presumably you're there with a problem that he may be able to help, but if you tell him you're fine, he hasn't got much to go on.
Just imagine, if people at the grocery store answered honestly:
"How are you?"
"I have cancer."
"Well that's nice, good to see you, you have a great day."
That's almost as bad as the people who ask the question and get the "I'm fine," but that's not good enough for them on a sunny day in front of the Post Office. "No," they say, grabbing your arm and looking soulfully into your eyes, "How are you."
These are never close friends who know how you are and care, but casual acquaintances who for some unknown reason, in front of the Post Office on a sunny afternoon, want you to bare your soul to them. I applaud them for an attempt at reaching out, but that's really not the best way to do it. Maybe an invitation for a drink or a coffee somewhere with chairs would be more appropriate.
So, when Dr. Ingrey asked me how I was, I said I felt like I'd been summoned to the principal's office for getting caught smoking in the washroom.
Dr. Ingrey's pretty much on the bottom of the food chain in the pack of surgeons, oncologists and pathologists I've been dealing with; he's just a lowly general practioner. But, he somehow dialed in to my concerns and offered individual assurances that they would be taken care of as well as possible. Really good drugs, home care, more drugs and a few other perks are available to make life of a recovering lobectomy patient tolerable.
The appointment ended with a letter sent to Dr. Evans, headlined URGENT, requesting a rescheduling of my lobectomy.
Once Dr. Evans is back from his holiday, I'll be hearing from his secretary. It will be interesting to see if her mood improves any when she gives me a new surgery date. I'm sure it will; it certainly couldn't be any worse than the last time I had the pleasure of a conversation with her.
Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
An’ if I stay it will be double
So come on and let me know!
After the new appointment is set, I think I'll wait a couple of days and call her back to say, "I want to cancel the surgery." Then, when she says, "You want to cancel the surgery?" in a hysterically incredulous, how-dare-you voice, I can say, "Nah, just kidding this time."
Oh dear one - here I am 18 months post surgery and I completely relate. I actually had a pretty good recovery from the lobe and half ectomy. I swim, garden, go on trips, and wonder if maybe, just maybe, I should have talked to some crazy doctor in the Philippines to see if they could have removed the evil spirits through other means. Still.
ReplyDeleteOr when I am feeling rebellious, I listen to those people who claim chemotherapy will kill you, but that infusing you in Vit C, feeding you mushrooms of questionable origin, and flooding you with stuff to detox your organs will kill those cells - or make the good ones cure you. What do I know? Nothing.
So we make peace with our decisions, go forward with the best information we have and the best of intentions, and try not to wonder what if on most days. Enjoy your sunshine coast and have plenty of care when you need it.
Best,
Steph
I have to say the part about the tests being inconclusive about the lymphoma troubled me because that seemed to say the lobectomy would have been a bad idea since it would not be curing the cancer and leaving you in worse shape.
ReplyDeleteResources on the web seem to say the lobectomy is the recommended procedure if the patient is strong enough for it.
I can certainly understand your reluctance. My father was diagnosed stage 1 lung cancer in his 70s but elected not to take the surgery. He said a friend of his had lung cancer and had the surgery and he still died of the cancer. My dad had about a year before the mets caused problems for him.
So much uncertainty to deal with. Very tough decision indeed.
Don