Steve & Joan's Story - A Tale of
Lymphoma
September 2004
I'm sitting at the kitchen table when Steve walks in from the
hall. He looks at me, raises his left arm and says "You know,
I have this lump under my arm and I've had it for a
while." His tone is off-hand, as if he simply wants to update
me on some minor point...such a little thing, this lump. Not really
worth mentioning.
I go over to take a closer look and softly touch where he's
pointing. The lump is about the size of a silver dollar, rising in
a gentle mound under his skin. A scary thought starts up, but I
quickly shove it down. Steve adds, "I've had this before.
It was an infection and went away after a few weeks." I let
myself be reassured. It feels as if some vague crisis has been
averted.
October 19, 2004
Steve is seeing the doctor today. When he gets home from work, he
tells me what was said - "That has to come out!" We know
these are not words spoken about an infection. Steve has his usual
natural calm, even now. The referral from the doctor says simply,
"Surgery - Axillary Mass."
I begin trolling the internet for surgeons. Little pieces of paper
with names, phone numbers and scribbles start to pile up. I finally
settle on one doctor who seems to have a good reputation, and
he's "in plan," or covered by our insurance. I call
his office. He's booked for a couple of months, but someone in
the practice can see Steve in ten days. I ask if the procedure will
take long. "Oh, the doctor will just be examining the patient
that day. We'll schedule the surgery afterward, if
necessary." So, it will be weeks before we know what Steve
has! How can we wait that long? Still, I take the appointment so we
will at least have something.
October 26, 2004
Steve's brother Robert who is a doctor has arranged for us to
see a colleague and good friend. I'm grateful we don't have
to struggle through the medical system alone. We sit for an hour in
the waiting room until there's a free moment for us. Robert has
dropped by, and we are all shown to one of the examining rooms. The
doctor is kind and attentive as he looks Steve over.
Finally, there is the briefest moment of silence. I see in the
doctor's face signs of well-meaning concern. I hear him choose
his words carefully. He knows more than he's saying, yet
he's honest and open. He thinks it could be a lymphoma. A CT
Scan should be done, and a needle biopsy. He will try to arrange
one right away. He leaves the room with Robert, and we are
alone.
I go over to sit next to Steve. I take his hand, and we sit like
that for a while. We talk a little, and I say how sorry I am. Tears
start to come, but I try to hold them back. We both know everything
has changed, and we are making room for that thought. Inside, I
hear the clank of metal curtains coming down - closing off other
futures, other ways of life. I don't grieve for them much. They
are already phantoms with no substance at all.
The doctor returns. He has arranged for Steve to see a
pathologist. Today! A miracle of medical scheduling. Robert leads
us through the vast warren of buildings to a small, subterranean
department. After a few words with the receptionist, we are shown
into a tiny room that looks like a lab. The doctor is young and
energetic.
With no fuss, he gets down to work. "Would you like a
local?" Before Steve can answer with the obvious, the doctor
adds that most people find the anesthesia more painful than the
procedure. Sounds like a very shaky theory to me, but I see Steve
is inclined to trust. He will push on defenseless.
The doctor produces a huge needle from the table and proceeds to
insert it slowly into Steve's lump. He moves it around a bit
and then draws out some fluid. We hold our breath while the needle
is in, as if that will keep the pain at bay. The doctor then
injects the fluid into something out of sight on the counter. After
repeating this process two more times, he says, "That's
it! I'll send this out to the lab and you'll know as soon
as we have some results." A few quick words with the
receptionist, and we're done.
Steve now gets some blood work done, and then we walk over to the
radiology scheduling desk to arrange for the CT Scan. There's
an opening the next morning. We've won the appointment lottery!
Robert rejoins us, we say our good-byes and leave for home, 45
minutes away. In the car, we talk a little, but there are long
moments of silence too.
October 27, 2004
The next morning we leave early for the CT Scan. We've packed
tote bags with vital provisions - medical papers, books, coffee and
snacks. I grab the morning paper as we get into the car.
The waiting room is already full when we arrive. Some people are
talking quietly; a few are idly watching a TV mounted high in one
corner. I know each one has a story and a worry. We sit down,
adding ours to the mix.
Every once in a while, a nurse appears and calls out a name. We
listen expectantly. Will we be the lucky one this time? When
Steve's name is finally called, the nurse guides him to a room
in the back. I begin the crossword puzzle, relieved to be only
concerned with words not deeds.
After about 20 minutes, Steve returns, and we can go. Now, we must
wait for the reports that will tell us the exact shape and
dimension of our future.
October 28, 2004
Robert calls Steve at work with the results. He has a tentative
diagnosis with a name - small lymphocytic lymphoma, or SLL. We will
soon find out that SLL is one of over 40 kinds of Non-Hodgkin's
lymphomas. They are grouped together to distinguish them from
Hodgkin's lymphoma, yet each is its own entity.
Steve calls, and I take the news calmly. I think I'd already
known the truth. As a couple, our way is to let life's troubles
lie quietly between us for a time. So it is today. We simply say
"Bye. See you later."
In the afternoon, I go to Border's to see what I can find. I
seek out the Health Section, one I luckily haven't had to
frequent often. There are shelves of cancer books divided into
sections by type. I find the lymphoma area and see
Non-Hodgkin's Lymphomas: Making Sense of Diagnosis,
Treatment and Options. A book I wouldn't have glanced at
yesterday is suddenly vitally important.
I also see
Stranger in the Village of the Sick by
Paul Stoller. It's the personal journey of a middle-aged
anthropology professor with lymphoma. I'm drawn to this book
and decide to take it despite the hardcover price. I want to go
beyond the facts to what it's really like to live with
cancer.
Later that night, when Steve walks in, I go to greet him and burst
into tears, covering my face with my hands. Where did that come
from?! Sadness is suddenly just there, uncontainable. He puts his
arm around me and we stand like that for a while. Soon I manage a
lame smile, and the mood lifts a little.
early November 2004
A few days later we get the Fine Needle Aspiration Report which
says:
"Immunopehnotypically, small lymphocytic lymphoma of
B-lymphoid lineage/nodal manifestation of chronic lymphocytic
leukemia, B-lymphoid lineage (B-SLL/CLL)."
It's the argot of the health profession, but decipherable with
the aid of a medical dictionary. When the CT Scan report arrives, I
look quickly for good news (always terse and negative). I'm
happy to see "No evidence of liver or lung metastasis,"
but also that there is a second enlarged lymph node in the right
groin area. I turn over the implications of this new data. It
doesn't take much medical training to know that two sites are
worse than one.
So far, the only person we've told about Steve's illness
is his brother Robert. (Somehow, if you don't tell anyone, you
can pretend nothing's changed.) Now, though, with a firm
diagnosis, we know it's time.
We need to tell the boys first because we don't want them to
find out from someone else. Our oldest David (20) lives with us, so
one night we go into his room to break the news. He's playing a
game on the computer, but looks up when we come in. How to begin? I
simply say we have something we want to tell him. We've found
out Dad has cancer. Steve offers a bit more about the details.
David looks puzzled, but curious. He asks a few questions -
gathering information and absorbing the news. I can tell he's
wondering what to make of this development and is taking his clues
from us. We keep the conversation light and matter-of-fact. Without
planning it that way, I think we're trying to reassure him and
in the process, reassure ourselves.
Johnny (18) is away at college so we have to tell him by phone.
The conversation goes much the same. He doesn't say much, just
listens for the most part. For once, I'm grateful to slip into
"male-style" talking. No need to express fears and other
messy feelings. We can simply share the news and that's
that!
Over the next few days, we tell close family members and then
others in an ever-widening circle. People are always kind and
sympathetic. I stay positive when sharing as I want others to know
that's truly how we feel. They can be comfortable with us as we
are doing OK.
We must now also find an oncologist who specializes in lymphomas.
We look around a bit on the internet, but eventually settle on Dr.
M. whom Robert recommends. She works at his hospital complex and
has a good reputation. We know from our reading how important it is
to chose a doctor carefully, and we trust his advice. He helps us
schedule an appointment for November 15th at 9:30.
November 15, 2004
We leave early as Steve wants to try a new route to the hospital.
The drive goes well despite rush hour traffic. I have the sense
these roads will become very familiar in the days to come.
We leave the car in the parking garage and cross the street to
the Cancer Center. First we visit the registration desk,
otherwise known as the money stop. Our insurance checks out, and
thus we gain entry to the Medical Oncology/Hematology Department
on the second floor. The receptionist there calls every one
"Baby" and "Honey," which is somehow
comforting. Most people in the waiting room are alone, but a few
have companions. There's a coffee pot in the corner, so we
grab two cups and sit down to wait.
After a while, a nurse calls Steve's name and leads us
through a door to the back. It's time for the taking of
blood - a ritual that will sanctify all our hospital visits.
Steve offers the phlebotomist the underside of his left arm. She
says little and smiles less, just gets to work. And what work it
is! We are in the presence of a master, an artist of the needle
and vial. Two painless minutes later we're back in the
waiting room.
Time passes, and eventually Steve is called again This time
we're led to an examining room. A nurse enters, asks some
questions and gives Steve a gown to put on. She says the doctor
will be in shortly. We know we've only transferred to a
private waiting room, but still, it feels like progress.
After a while, Dr. M. comes in and greets us both. She is about
our age and seems to be from Eastern Europe, at least that's
where I place her accent. Her manner is warm, but professional.
She examines Steve carefully, asking many questions about his
entire medical history. I mention an in-grown toenail, and she
jumps to check it out.
Steve's brother Robert appears at the door, just in time for
the summing up. Dr. M. wants to do a number of tests before she
sees Steve again in December. They include a complete physical,
bone marrow biopsy, lymphectomy, and colonoscopy. She also
orders three vaccinations for today: flu, hepatitis and
pneumonia. Any kind of infection is dangerous when your immune
system is weakened. After a bit more talk, she says goodbye, and
we wait for the nurse to arrive with the shots.
On the way home, we talk about the doctor and her assessment. We
still don't know much about Steve's illness, but at
least something is happening. I wonder out loud if we should
interview some other doctors just in case, but I think we both
know that's not going to happen. It feels as if we've
stepped onto a conveyor belt carrying us forward to an unknown
place. Easy to get on, harder to get off.
late November 2004
The next day Steve feels terrible. He makes it through work, but
goes to bed as soon as he gets home. We learn flu-like symptoms
are a common side effect of the pneumonia shot. Meanwhile,
we're waiting to hear news of the tests. We'd like to
schedule the biopsy and lymphectomy at the same time, but
it's hard to coordinate with two busy doctors. There are
calls back and forth, missed messages and delays, but finally we
have a time - Monday, November 29 at 1:30.
I set up Steve's physical for Saturday morning - a good day
since he won't have to use up precious sick leave. I stay
home to be with my Mom. In May, she was diagnosed with lung
cancer, and two strokes have left her unable to walk or move her
hands. So far, I've managed to care for her in our home with
the help of Capital
Hospice, but for the past few weeks, she's been failing
rapidly. We know death is near, and indeed she does pass away on
Monday. I miss her so, but hers is another story for another
time.
Despite all that's happened, we decide to go ahead with
Thanksgiving dinner on Thursday. Johnny is back from college,
and my brother, sister and I want to be together. We take
comfort in the familiar and celebrate once again Mom's
simple, but perfect stuffing recipe.
November 29, 2004
Today Steve is scheduled for two procedures. Dr. M. will conduct a
bone marrow biopsy. She'll remove a small tissue sample to be
tested to see if Steve's cancer has spread to the marrow. Dr.
F. will perform a lymphectomy. He'll remove the lump under
Steve's arm, so that it too can be analyzed. This larger tissue
sample will give us a chance for a more confident diagnosis. I tell
Steve to ask Dr. F. if he'll save the lump for us so we can
keep it in a jar. Much as we would enjoy this souvenir, we decide
it would be better not to distract the good doctor.
As instructed, we arrive at the hospital around 11:30, two hours
before the scheduled surgery. We follow the by-now familiar
routine - sign in, wait to be called, review insurance, sit back
down. Robert comes by to wish us well. After a time, the
receptionist calls a few names, and we gather into a small
group. Someone is going to guide us to the surgical prep area. I
guess nervous people tend to get lost. We follow our leader
through corridors and down the elevator to a much larger waiting
area.
A nurse comes to take Steve and the other actual patients to get
prepped. As they disappear behind the big swinging doors, she
says we loved ones will be able to join them later. I find a
seat and settle in to wait. After about 45 minutes, the nurse
returns and calls out Steve's name. She's ready to take
me to see him.
He's dressed in a white gown and lying in a hospital bed. The
area around the bed is open in the front, but enclosed on both
sides by a curtain. Steve looks so vulnerable; I want to whisk him
out of there. He's smiling, though, and seems ready to face
whatever's coming. We talk quietly for a while. He says
he's seen the doctors already. We know he's actually
fortunate to be able to do both procedures at one time under
general anesthesia. Still, the whole surgery ambience is a little
unsettling. It's time for me to go. One last smile goodbye, and
back to the waiting room.
The wait lasts about two hours or so. At some point, I wonder
down to the cafeteria to get a salad, muffin and cappuccino.
Mostly, though, I sit, read and watch a little TV. After a
while, I see Dr. F. heading toward me. He says everything went
well; Steve's doing just fine. I like Dr. F.'s energy.
He's calm and reassuring...glad, I'm sure, to be
delivering good news.
Soon I get to go back and see him. I'm surprised to find
Steve sitting up, not looking the least bit groggy. He's
having a little juice and snack and talking to the post-op nurse
- a big woman with a strong German accent. I'm so relieved
that all seems well. Since I'm the designated competent
person, the nurse hands me some instructions to read about
Steve's care for the evening and days to come. I try to
concentrate, but feel relieved that Steve's taking it all in
as well. I'm a bit absent-minded when it comes to real life.
My main task will be to empty Steve's Jackson-Pratt drain -
a device used to help remove fluid from a surgical site. It
consists of a little bulb with some tubing attached to a
removable plug. In Steve's case, the bulb is hanging under
his armpit with the tubing coming out of hole in his skin. Every
eight hours or so, I'm to remove the bulb, empty and measure
the fluid, check its color, squeeze the bulb (to remove the air)
and then reattach. The nurse gives us a little demonstration. I
wish I had her confident knowledge of this arcane activity!
Soon it's time to go. I help Steve get dressed and then
leave to get the car. Someone will take Steve down to the lobby
in a wheelchair while I'm gone. It's dark outside; a
whole day has passed within these hospital walls. As I pull into
the circular driveway, I see Steve coming through the main doors
with his brother Robert. We have a chance to talk for a bit and
then leave for home.
TO BE CONTINUED....Please check back!
(last updated March 3, 2005)