We're still climbing in the wayback machine. . . a little further along in the process. . . still processing, reacting. . . planning. . . figuring out what to do.
I'll probably post this Friday, and then post the last of the "already-written" stuff on auto while I'm on vacation. But I probably won't really be able to respond to comments on Chapter 2 or 3 until I get back from vacation. I'll be able to READ them. . . but replying is a pain in the ass from the iThingies.
Read Chapter 1 Here
Chapter 2: Exploration (Days 4 – 41)
When you choose
your own adventure you have the luxury of exploring first, then
discovering. When your adventure chooses
you, it’s the opposite. The Day My Wife
Was Dying, was the day she learned she had cancer. We
then set off on a fact-finding mission to figure out just what sort of
adventure had picked us.
She had her
diagnosis, but really no idea what to do with it. Do you talk to an oncologist, do you talk to
a cancer surgeon? Who leads the
charge? Is it the general
practitioner? Her OB/GYN? There was an overarching sense of a ticking
time bomb. With Christmas approaching we
wanted desperately to keep things as normal for the kids as we could, but this
is cancer we’re talking about. With my
mother’s treatment in the back of our minds, we thought we had some time to
work with. They had told my mother when
she had visited with the doctor that she could and should go on the vacation
she had planned to take prior to coming back and having the surgery, so we were
optimistic that they’d tell my wife the same thing; in essence, enjoy your
Christmas, save your cancer for the New Year. Hurray for 2010! Oh. . . hi, cancer.
We learned that cancer
surgeons were step one and got a list of them from the radiologist at the
hospital. My mother-in-law was a nurse
and called her friends who recommended a few people. My mother loved hers and recommended
her. The first day of the following week
Leslie called seven of them, eliminating some simply by their ‘first available’
dates being further out than what we found comfortable.
She faxed
pathology reports to doctors’ offices, or at least arranged for them to be
faxed. Over the phone she was able to
capture a lot more information about her specific type of cancer and the types
of treatment she could expect. I was at
work so I received periodic updates as she called doctors and they (or their
nurses) returned those calls. We settled
on three doctors, my mother’s doctor and two that the hospital had recommended,
and I had researched (okay, I googled her).
Two of the three worked in the same office, and when we couldn’t get our
appointment confirmed in time, we eliminated one of them and opted to keep two
women. It was more or less an interview
process. If one of them blew us away we
still wanted to get a second opinion, but we’d go with the one we felt warm and
fuzzy about.
The first
appointment was with Dr. Professor. No,
that’s not her real name, but wouldn’t it be funny if it were? No, Dr. Professor not only was a celebrated
cancer surgeon but also was also the Clinical Assistant Professor at a Medical College.
Perhaps that should have warned us away.
It did not.
The visit itself
overall was fine. I give it a ‘C’. Doctor Professor was caring and
compassionate. She appeared to know what
she was about. She made sure we left
knowing what our options were. If we had
met just Doctor Professor perhaps I would have upgraded the visit to a ‘B+’
. But, and this is an enormous ‘but’,
when you sign on with a doctor, their staff also comes with the package. You’re not just getting Doctor Professor, but
also her nurses and physician’s assistants and radiologist and etc. And, and this is an enormous ‘and’, in the
case of a professor, her students. And
so my wife, who was scared and uncertain and wanted nothing so much as to be
placed in the hands of a caring but competent surgeon to guide her on the road
to recovery instead found herself in the awkward hands of a medical student as
he used her cancer experience to generate some experience of his own. It didn’t help his cause that he was
male. That made her less comfortable,
and he couldn’t help his gender. It also
didn’t help his cause that he had every appearance of having just entered
Junior High, though his tie and little doctor’s coat helped that out a
‘little’.
What followed
Doogie Howser M.D. (in training) was a cavalcade of exams. First his, then a physician’s assistant, then
Doctor Professor herself, praise the lord.
At each exam my wife was asked a series of questions. In no instance were the questions allowed to
be different. Medical history/age of
children/which breast/age of grandmother when she found her cancer/and on and
on. The identical questions were asked
no less than four times. The admitting
nurse took them. Doogie took them. The Physician’s Assistant took them. Dr. Professor took them. At one time I looked around the room where my
wife, discomfort evident, was being examined and discussed, and counted six medical
staffers.
Early on in the
process I told Leslie to tell Doogie that she was uncomfortable being examined
by him and to fetch the doctor for her, but she wasn’t comfortable doing that
either, so I suppose she chose the lesser of two discomforts.
I was disappointed
in the process to say the least. I do
understand that the best way to train people to help others better is to get them
real world experience. I just don’t
appreciate my wife’s misfortune being used as fuel for that experience. I just want her health care managed by
someone who knows what he/she is doing.
I’m sorry, but my wife’s cancer is not your set of surgical training
wheels. Or at least it shouldn’t be.
An appointment to
get an MRI was set up with promises to forward results to Dr. Professor upon
receipt, should we wish to pursue Leslie’s healthcare through her office. The MRI was scheduled four days later and was
actually handled at my mother’s doctor’s office, the Breast Cancer Center of
Passavant Hospital.
Wow.
That’s right, I
started and ended a paragraph with just a word, “wow”. It’s the subject of the paragraph, the
description of the experience and the conclusion of the paragraph all wrapped
up in one. But is it a good wow, or a
bad wow?
Before the visit
to the Breast Cancer Center,
my mother had a follow-up with her doctor.
I’ll call her Doctor General.
I’ll be talking more about her later.
My mother had tried to piggy back an appointment with her doctor or to
delay her visit so that Leslie could take her time slot. It hadn’t really worked out, but the two did
chat about Leslie’s cancer and what to do.
Leslie had also talked to the nurses there and had been getting a lot of
the information about her condition from them.
So when we arrived
at the Breast Cancer Center,
although we weren’t meeting with the doctor yet (just getting some imaging work
done) Leslie was known. She was
hugged. She was greeted. She got a sympathy card from the staff. She was a cancer rock star.
And to be fair to
the folks working at the Breast
Cancer Center
who are not in Doctor General’s staff, they went above and beyond the call of
duty as well. The nurse who wheeled us
into the changing room prior to my wife’s MRI was a cancer survivor. She’d had a double mastectomy with
reconstructive surgery and offered to show her how it looked. That's right, she offered to go topless for her. Leslie (in my absence, of course) took her up
on it. I don’t know if that’s protocol,
but it was offered genuinely with zero self consciousness and it took some of
the scariness out of the whole thing. We
knew about reconstruction, but how would it look if she needed it? Now she knew. Everything was handled well.
Earlier I said
that when you remove the threat of imminent death everything seems to be good
news, and although that remains true compared to that threat, once the threat
was removed the idea that it was ever really
a threat started to fade too. And that’s
when each new bit of bad news began to sink a little deeper into our
tragedy-thickened skins. The MRI results
came back and said the tumor was three times larger than what we had
thought. It was 5.5 cm, not 1.8 cm. And although the prognosis remained the same,
the result was not the “woohoo” I may have led you to believe it was. There were more tears, and long
discussions. I remained pretty
comfortable regardless, but it’s far easier to remain at peace when you’re not
carrying around a tumor that has somehow gone overnight from the size of a
penny to the size of a golf ball. And
yes, I measured a penny and a golf ball to accurately write the comparison.
Her new tumor size pushed off the reassuring “Early Stages” breast
cancer graphic (from the poster in the examination room showing a tiny little
tumor on the woman’s transparent breast) into the more ominous “Advanced
Stages” graphic where the transparent breast had a larger percentage of the picture
devoted to the malignant bump and went on to indicate it might have migrated to
the lymph nodes.
Also, we’d been
given some literature after our visit with Doctor Professor and reading cancer
literature about what one might ‘possibly’ expect when receiving chemo is not a
pleasant activity. Each ‘possibly’ is
translated to a ‘probably’ in the paranoid brain, and when the probablies
include such things as bleeding, mouth sores, hair loss, constipation, fatigue,
and more, then you start getting a little depressed.
The appointment
with Dr. General was a couple days away and we used that time, once more, to calm
ourselves down. Leslie had a friend who
had almost exactly the same size tumor and had undergone chemo and surgery and
was, like my mother, good as new, or at the very least certified
pre-owned. That much, again, got us
through the interim until we were able to meet with the good Doctor.
And so we met with
the doctor. I said when you pick the
doctor you get the staff, but I think if you picked this particular staff I
you’d pair it with any reasonably competent doctor and consider yourself
well-served. In this case the Doctor was
icing on the cake.
Little things mean
so much. The ridiculous gown that nobody
can explain how to properly tie and inexplicably have a pocket that ends up
being centered over your left shoulder blade had been replaced by a soft white terry
cloth gown with a pink cancer ribbon stitched on the front. How much money does the hospital save keeping
those threadbare monstrosities in service and rewashing them for decades? I don’t know, but you’d think with the amount
of money it costs to see a doctor every hospital in America could afford to foot the
bill for a nice soft terrycloth robe, because my wife loved it. Loved it!
We almost stole it we loved it so much.
But we didn’t. Seriously, cause
that’s just inviting a karmic beatdown.
Doctor General was
very no-nonsense. She talked fast and
didn’t wait to see if we were taking notes.
She made certain assumptions about what we knew and what we didn’t know
and she just blazed a trail of treatment based on the path she assumed we were
already on. And maybe that would turn
some people off. But it was very
comforting to my wife. She liked the
idea that someone was, at last, taking charge of her treatment. Someone had a plan. Throughout the process we were both aware
that we could have stopped the Doctor and gotten her to explain certain things
a little more clearly, but honestly, we’d already been through it with one
doctor and we already knew the route we wanted to take. She confirmed some things; for example, chemo
was a must. She explained the size of
the tumor as shown on the MRI was more accurate than the Ultrasound image and
that, although the MRI has a tendency to exaggerate size, it doesn’t exaggerate
it by all that much. She explained that
she would be removing lymph nodes, specifically the sentinel nodes, from under
Leslie’s arm and biopsying them to see if there was any movement, but that it
really didn’t matter all that much if it had because the treatment remained the
same, though it meant the other lymph nodes would probably also need to be
removed after surgery. So many things we
learned. But first we just had that
meeting. And Doctor General’s staff was so
kind and considerate, and the terry cloth robes were so soft and fluffy, and
Doctor General seemed so on top of things that our decision was made. We’d been blown away and would call Doctor
Professor the following day to tell her we were going to get treatment
elsewhere. We learned later that when
Doctor General left her old job to work at The Breast Cancer Center, the person her old
hospital had hired to fill the job opening had been Doctor Professor. Dr. Professor was the fill-in for Doctor
General’s vacated position.
We left The Breast Cancer Center with appointments for the sentinel node procedure (lymphoidectomy) and a
follow-up appointment as well as a scheduled meeting with the oncologist who
would handle the chemo. Doctor General
gave us a list of a few and had her staff make an appointment with one, she
also encouraged participation in any clinical trials that might be going on.
A week and a half
later we met with the oncologist. We’d
been warned he could be abrasive or standoffish, but we’d also been told he was
the best. On the flip side, we were told
that although he may be the best, essentially every oncologist follows the same
chemical cocktail recipe, at least all of the oncologists in the hospital
network we were currently in, and that we could expect to get just about the
same thing anywhere we went. We walked
into his office expecting the worst and were pleasantly surprised. We were given information about a clinical
trial, but also information about the standard of care we’d receive if we
didn’t participate.
He made her feel
confident that she’d handle the chemotherapy just fine. He explained to her that the drugs they used
were so much better than the drugs of 20 years ago and the symptoms so much
less, and that while the literature listed all the possibilities, the
probablies were a much shorter list. And
most importantly he said it made no difference to him if we waited until after
the holidays to begin treatment or not.
There’d be a Christmas after all!
We were almost
done exploring. Prior to the sentinel
node surgery, Dr. General scheduled a bone scan. All the familiar trepidation was there. Every new scan brought us new awful news. Each new procedure brought new tears.
Amazingly, the
bone scan was negative. If the lymphoidectomy
showed no cancer in the sentinel node we could complete the crazy good news
trifecta.
The day of the
surgery I drove her to the hospital and we waited as they prepped the room and
explained the logistics. It was a slick
operation with a flat panel screen giving patient numbers and their locations
in color coded blocks. The nurse at the
desk provided me with a patient number as well as an explanation of what each
color coded block meant. One was
surgery, for example. If my wife was in
surgery, the block would be red or green or something, and I’d look on my
sheet, find the corresponding color, and learn that it meant I had about two
hours left to wait. Each color code had
a one or two sentence write-up that explained what was going on, and when it
would be done. We met again with the
doctor, made small talk, went over the surgery, and she breezed from the room.
Leslie was taken
away and I followed her progress on my sheet and on the monitor. When the surgery was over Dr. General came
out to tell me that everything had gone well.
No problems. Leslie would be in
recovery in an hour or so. They’d get
the results of the biopsies on Friday (that would turn out to be overly
optimistic).
She recovered like
a champ. She had one blue breast from
dye that they’d injected in order to find the sentinel node or nodes to figure
out which nodes to take, and she wasn’t allowed to lift anything over 15 pounds
above her head for the next five days or so.
Doctor General said she didn’t want her to “stretch my incision”. She spoke about the incision like people talk
about their children. Don’t you talk
that way to my son. Don’t you stretch my
incision. It was hers. I asked her if this would interfere with
Leslie’s duties ironing my shirts and doing my laundry for the weeks, and she
smoothly replied that she recommended Leslie not doing any laundry or ironing
for at least a year, then winked at Leslie.
We went home and
Leslie rested and took pain pills. I
think they were the only pain pills she took.
After that first dose she didn’t need them anymore. She said it felt almost like she’d gotten a
brush burn under her arm after it had started to heal a bit, but the pain never
got bad enough after that first day to take more medicine.
Recovery was
relatively straight forward. She didn’t
lift our youngest and put her to bed, nor did she feel comfortable bathing her,
but apart from that, it was business as usual.
She had a large blue stain on her breast from the dye they’d used to
find her sentinel nodes, and a feeling of “brush burn” where they’d performed
the removals, but otherwise she was fine.
We waited for the
results to come back. Again, we
counseled ourselves that cancer in the sentinel nodes made no difference to
treatment and none in the prognosis, but they’d more than likely remove them
all after radiation was over as a precautionary measure.
And there was
cancer in the lymph nodes. Not in the
one or two they’d biopsied that were not sentinel nodes, but in the sentinel
nodes, the primary filters of the fluids draining from the breast, there was
cancer.
Again, not
“woohoo” news, but not completely unexpected, this news solidified her position
on the “Advanced Stages of Cancer – Stage III” graphic. At least she wasn’t Stage IV, metastatic cancer. When the cancer moves out of the lymph nodes
into other parts of the body it’s considered to be metastatic.
We met with Doctor
General. She gave us our options. She even held out the carrot that if Leslie
responded particularly well to the chemotherapy we had in our future she might
not have to remove all the lymph nodes at a future date. She said it was “negotiable.” “Negotiable” is another one of the ‘little
things’ that mean so much. Good ol’
Doctor General.
The adventure that
chose us on “The Day My Wife Was Dying” had been duly explored. It was a little scary, and a little
overwhelming, but I saw and I think shared with Leslie, a definite vision of a
happy ending waiting for us.
With a clearer
picture of what to expect and what kind of effort would be required to get that
happy ending we both wanted, we focused on who to tell, and how and what to
tell them.
Continue to Chapter 3: Here
