Phone rings at 8am, call from ENT. “I got the labs back and
I’m sorry to say it is cancer. I’m really sorry. This result is very surprising
to me. I’m going to order a PET Scan ASAP so we can figure out where the
primary site is and also see if there are any other places it may have spread
to so we can treat them also. I’m really sorry.” HOPE can’t keep up the pace,
it has faded back into the rest of the pack. FEAR is now making a charge on the
outside for the lead.
At this point my patient feedback to doctors everywhere is
this: When you say “I’m really sorry” to a patient, what are you “sorry” about?
Please explain yourself. I can tell you when receiving this information, I took
it to mean my life might be ending soon. I laid awake several nights pondering
death and came to realize I wasn’t really afraid of death, I was afraid of not
living anymore. I know intuitively I suppose, that throat cancer can affect
your tongue, ability to swallow, eating, speaking etc. It can have a profound
impact on life as you know it, either affecting its quality or ending it
altogether. The limited Dr. Google searches I performed had me deceased within
a year, I’ve since stopped Dr. Googling. Yes, FEAR does that to us, no surprise
there. When I shared these feelings days later with my wife, she said she thinks
they’re sorry that they had to give bad news and did it over the phone.
Tuesday, April 23,
2019
My Primary Care doctor called me at about 6pm. Wanted to see
how I’m doing and if there’s anything he can do. He suggests I let him
prescribe valium for the PET Scan scheduled for Thursday in case I have any
concerns about anxiety/claustrophobia. In my younger days I would have brushed
it off, but I’m open to all possibilities now. He let me know that he was
calling on his cell and I should call him anytime I needed him. He said what I
was facing had a rough road to recovery and there were decisions to be made
along the way affecting quality of life. I shared that I just wanted all of the
doctors to be honest and upfront with information they had. He said if I ever
felt I was not getting truthful information from someone to call him and he
would connect me with a different doctor. His words, “The days of holding back
information from a patient are over. Today doctors need to share everything
they can with the patient, it’s their body. They have a right to know and make
their own decisions accordingly.” I’ve known this man for almost 30 years. I
will be nominating him for the doctor’s Hall of Fame at some point.
Thursday, April 25,
2019
Heading out to see the ENT and then having the PET Scan.
Minutes from the house, I get a call from the ENT.
“So you had the PET Scan yesterday?”
“No, it’s today. I’m on my way in to see you and then the scan is at noon.”
“Oh, no wonder the result says ‘incomplete,’ it hasn’t happened yet. So if you’re coming in to see me I don’t really have any more information than when we last spoke on Monday.”
“So I asked on Monday if I should cancel this appointment since I knew that was going to be the case and was told you wanted me to keep the appointment.”
“Yeah, they also told me the PET scan was going to be yesterday so I thought it made sense. I’m happy to see you again this morning if you want to talk more, up to you.”
“Well, I’m on my way so let’s meet.”
I think anytime you can get face time with a doctor during
times like this it’s important to take advantage of it. We met, discussed the
results of the biopsy, he still showed surprise that his original “gut” feeling
wasn’t correct and I reminded him that “that ship has sailed.”
I asked him about the feeling of urgency I sensed from not
only him but my primary care and explained I was of two minds. On the positive
side, I felt that doctors don’t like not knowing what’s wrong with someone.
They feel an urgency to get to the bottom of the issue and begin healing the
patient. On the negative side, I was concerned that whatever I had was serious
and they were moving extremely fast because I was, in a word, screwed.
He assured me that the urgency could be explained simply, “You came to me for answers and all I’ve been able to give you is ‘maybe’s and probably’s,’ and that’s not good enough.” ENCOURAGED has now shown itself to be a factor in this race.
He shared his sense that the type of cancer I was dealing
with was one he has seen successfully treated. He stated if it is what he now
suspects, that “100% of MY patients have been cured.” Sounds good but as I tend
to do to a fault, let’s dissect that statement.
100% of MY Patients…
1 patient cured is 100%. Good but not necessarily
impressive.
10 patients out of 10 cured is also 100%. Much better trend
there.
“MY” patients. I love doctors who are confident. I wouldn’t
want any other kind. This does give me slight pause however. Are they cured
because of “HIS” treatment and approach? Am I better off because he’s my doctor
or is he merely stating a fact that all of his patients that have had this
specific type of cancer are all cured. I’ll stick with a winner but again, the
statement gives me pause.
On to Imaging and the PET Scan. It’s referred to as a “full
body scan.” It actually images you from the top of your head to about mid-thigh
or knees. Not exactly full body then but whatever, apparently there is no
concern something below your thighs could exist without a trace of it higher
up, possibly in the abdomen. I already knew that the machine was very similar
to the CT scan and I didn’t feel any anxiety about the procedure. (The valium
remained in my pocket.) The scan machine is basically a donut with a table
moving the patient back and forth through the hole. No reason to be concerned
for me. The entire process took about 2 hours; 45 minutes in a prep room
drinking a berry cocktail for the imaging, some radioactive agent injected, on
to the machine, several minutes of laying still, procedure over. Now we wait.
It seemed by now there was definitely something going on in
my tonsil, possibly my thyroid so this would confirm that but would it also
find something had spread beyond that area? I asked how soon would I be
informed of the results and would it be before my consult with the Oncologist
the following Tuesday. I was assured I would hear sooner than that.
At 6pm my primary care doctor called confirming I had a PET
Scan. I said I finished about 3 hours ago, he said, “I have the results.” That
didn’t take long, again the urgency question appears. He said the scan
confirmed a tumor in the base of my tongue, also referred to as the lingual
tonsil and a swollen lymph node containing cancer cells. We discussed the
seriousness of this but he could not answer specific questions about
survival or recovery rates, not his area of expertise. He shared that he
had 1 patient who went through this and it was a rough road to recovery. He
asked if I had done a full body scan because he only had the throat/neck
report. We would have to wait for the rest of the results.
Friday, April 26,
2019
The patient portal app is a wonderful thing. I never used it
very much but it’s a great reference for seeing the results of different tests,
blood work, etc. It also stores and tracks appointments. Friday morning I got up
and took a peek to see if the PET scan results were posted. They were not but
several new appointments were in place, scheduled by the ENT. About 30 minutes
later he called. I told him I noticed he had been busy. He went over the same
results as the primary care did the night before. I asked if he had the rest of
the results and he realized, “Oh, that’s probably what you were most concerned
about overnight. I do have them here. The results show everything else is
normal. We’re just dealing with the base of your tongue and the lymph node.”
I asked again about his experience with treatment and he
repeated that “100% of my patients have been cured.” I asked if their treatment
was exclusively radiation and he said that was the case.
He added, “I’m curious as to what the oncologist has to say
next week, we’re usually on the same page. Have a good weekend.”
“Thanks.”
Saturday, April
27-Monday, April 29, 2019
Another stretch of unremarkable days except for letting all
if this information sink in. Lots of jockeying for position amongst my emotions,
mostly positive though. I attribute much of that to wife, who is my ROCK.
Week 3: Holy Phuc
Week 3: Holy Phuc
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