The
past three weeks have been a whirlwind of stress and emotions, and the next few
weeks aren’t promising to be much easier.
I’ll
start at the beginning…In February, I remember my rib popping out of place and
bothering me. No big deal, I went to my chiropractor and he put it back. Easy.
Then
in March, the same rib popped out of place when I turned around in my car seat
to take care of my son. This time, it also felt like it broke. Even after the
rib was put back, a sharp pain in my side accompanied deep breaths and certain
movements. As far as I knew, there isn’t much that can be done for broken ribs,
so I let it be, went on vacation and eventually it all healed up (or at least
it stopped hurting).
Fast-forward
to mid August, on a very average day at work, while sitting at my desk, I felt
the rib pop out of place again, and felt a crack again, in a similar, but not
identical place. I wasn’t sure it was the same rib, but they were certainly
close to each other. I going to ignore it, but then I had lunch with my good
friend Jennifer, who was celebrating her one-year check up, where the cancer
she had fought was still gone.
We
were reminiscing on when her symptoms started, and she was ignoring them,
because everyone around her told her it was probably something benign. I darn
near yelled at her to go to the doctor, because she was ignoring important
signs from her body. So after lunch, I decided
to take my own advice and made an appointment to see my doctor the next day.
He was
bothered that the same rib(s) having so much trouble in one year, and he could
feel swelling where I thought the rib was broken. So off I went for a chest
x-ray. I looked at the X-Rays with the tech (a pal of mine), not that I knew
what I was looking at, and even my layman’s eyes could see something was wrong.
The rib that was causing me pain had a large blight on the x-ray where the bone
couldn’t be seen. Uh oh.
The
next day, the doctor called and confirmed my fears that there was an
abnormality on my rib, and we needed to look closer. This abnormality was
breaking my ribs from the inside. It appeared that two ribs had been affected,
because the abnormality on my 10th rib appeared newer than the one
on my 9th rib. Whatever it was might be spreading and we needed to
find out what it was. So my doctor requested that I go get a LOT of blood work
done, and he scheduled me for a CT Scan and bone biopsy the following Friday –
8 days away.
When
I asked my doctor what it could be,
none of the answers were good, but some were terrible. Multiple myeloma,
cancer, metabolic bone disorders, thyroid issues, or a benign bone cyst. But
the fact that the abnormality was on two ribs wasn’t a good sign, as the less
scary options wouldn’t have spread to another rib.
So
enter another good friend and co-worker, Dana. Who went with me to get
my blood drawn and then we went out for wine. Lots of wine. Then pizza. The
blood work was clearly extensive, and each little tube was marked “PRIORITY.
MUST BE PROCESSED IMMEDIATELY”.
Two
days later, my doctor called again, with the first good news of the week. My
blood work looked awesome. My thyroid was functioning normally, and the other
tests were all pretty normal. So the chances of my problem being benign went
up, and the chances of it being cancer that was advanced went down. It could
still be cancer.
So
we waited until the next Friday. Anxiously, without much sleep, and with a lot
of milk shakes.
Friday,
August 24th, I went in for a CT Scan and bone biopsy. The staff at
Kadlec Regional Medical Center hospital was wonderful, efficient and kind. I
would have multiple CT Scans, they told me. First, they took the scan without
iodine contrast dye. Then they did it with the dye. At that point, they let me
see it, and there, on my right, posterior ninth rib, clear as day, was a tumor,
that looked to be about the size of a golf ball. Crap.
 |
| My CT scan, showing a tumor approximately 4.0cm x 2.0cm. |
They
took me to a waiting room, where I would get ready for the biopsy, while the
radiologist took a look at my CT scans and decided how to perform the biopsy.
Then, back into the CT scanner I went. This time, they would use the image to
guide a biopsy needle to the tumor and bone to take samples.
When
the nurse asked me if I wanted conscious sedation, or if I was happy with local
anesthesia only, I almost laughed. Of
course I wanted the pain killers. I can’t imagine anyone wanting to feel
needle hit bone. Thanks to an awesome
combination of Valium and Morphine, and I didn’t even feel the biopsy. Three or
four samples were taken, and sent off to the pathology department, and I was
sent to recovery.
The
biopsy left me with some discomfort and bruising on my back, and hurt a bit for
a few days, but healed up nicely. On Monday, the doctor called to tell me that,
while my results weren’t in yet, the pathologist had notified him that he was
sending my biopsy samples to the Mayo Clinic for review, and that I would
receive his (the local pathologist’s) findings the next day. Crap.
In
the meantime, more good friends showed up to help keep me distracted. We made
baby blankets for the many babies due in the next few weeks, drank wine, and
played classic Nintendo (Dr. Mario and Bubble Bobble). We had a lot of
fun.
The
next day, I was so nervous I couldn’t get much done, and went home early. My doctor called at 3 and asked me to come in
that afternoon, so we could talk about the results. Double crap. I doubted he
would call me in to tell me the tumor was nothing but rainbows and flowers.
My
husband and son had been gone since Sunday, visiting my father-in-law down in
California, while my husband attended some training down there. After I
finished a serious crying jag, I decided I wasn’t about to go to that
appointment alone, so yet another good friend came to my rescue. My very good
friend Andrea blew off the rest of her busy day to come with me. We have the
same doctor, so it was awesome to have a friend with me who could read the
doctor, and knew what was normal and what wasn’t.
His
first words to me were “it isn’t as bad as it could be. “ I have cancer.
I
have Spindle Cell Sarcoma, and here is what I know about it:
- It’s very very rare. Only about 80 cases occur in the U.S. each year.
This means there aren’t many doctors that know how to treat it, and that there
is very little information available on it.
- It is characterized and named for the shape of the cancer cells, which
look like spindles (Sleeping Beauty tried to warn me about spindles).
- Its cause is unknown.
- Stage 1 isn’t so bad. If you catch it early, you can surgically remove
it and, so long as you get it all, you shouldn’t see it again.
- If you don’t get it all with surgery, it comes back with a vengeance.
- If you don’t catch it early, its pretty much impossible to stop.
- It grows slow, but steady, and normally occurs on the long bones of the
body.
- The rib is a weird and complicated place to have it.
The
good news from the pathologist is that mine appears to be stage one. While the
tumor is large (4.0 cm x 2.0 cm), there is little pleomorphism, which is the
term for how mutated the cells are. Mine are getting spindly, but it isn’t too
bad yet. That’s a great sign.
The
other good news came from my doctor (who caught it early and shall now be known
as super-doc): The best doctor in the western U.S. for sarcomas is in Seattle,
just a few hours away. People fly from Chicago and LA to see him, and I am much
closer. My doctor had referred another case of this cancer to him before, and
had been happily monitoring the man for 10 years without any sign of
recurrence.
So
I have been referred to Dr. Chappie Conrad at the University of Washington
Medical Center, where he is a department director, and also director of the
Seattle Cancer Care Alliance’s Sarcoma department. Dr. Conrad is the best at
this, and I’m told he also knows how to remove tumors from difficult areas,
like the inside of a rib.
Calling
the friends and family who needed updates was incredibly difficult. It’s a
horrible story to have to tell, and I imagine it sucks just as much to hear
it. So I didn’t get to as many people as
I wanted.
My
appointment with Chappie is on Tuesday morning, and I’ll be meeting with him
and another orthopedic surgeon, who will develop a treatment plan. The
treatment will most certainly involve surgery, to remove the tumor and the rib
it is attached to, as well as the soft tissues and muscles that the tumor has
formed in.
In
the mean time, the pain in my rib is steadily getting worse. I can’t make it
past 2 p.m. anymore without something to relieve the pain and pressure. The
longer I sit, the worse it gets, so I’m trying to stretch a lot , and taking Aleve
to help with the pain. I’m glad I don’t need anything stronger.
Since
I am so very lucky to have many friends and family members who care about me
(as evidenced above), I figured this would be the easiest way to get the
information out to those who want to know. So I’ll keep this blog updated when
I can.
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