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July 2002
7/28 - Saturday
Went to Disney in Orlando with Jen's brother John and friend, Sara. Got to see
Jen's Mom, Dad and sister as well. Good to laugh and have some fun, knowing
chemo was around the corner. I hear laughter is good medicine. It worked,
despite the heat. Good stories with friends and family always seems to bring a
layer of warmth and security to bear on any situation.
7/25 - Thursday
Today was a very full day.
Jen and I made a same-day round trip flight from Ft. Lauderdale to New York to
visit Memorial Sloan-Kettering (MSK)Cancer Center. Unquestionably, MSK is one
of the top cancer centers in the world. Jen's research and phone persistence
got our record reviewed by one of their top gastric surgical oncologists.
Well, he essentially said the same thing as M.D. Anderson - surgery in Stage IV
Gastric cancer has not been shown to prolong life...and they just don't do it
with the intent to cure. They do it for palliative reasons (remove pain) in
case a tumor is blocking swallowing, etc. But not if I don't have those
smptoms. In fact, since its a high-risk surgery, it can cause negative
consequences if ANYTHING goes less than perfect: leaking from the new
stomach/esophageal connection, spreading of microscopic tumor cells, etc.
I was a bit frustrated by the whole trip (and cost) since I thought the Dr.
could have told me that over the phone. He was good to us - spent some time
going over details, etc. Jen thinks there was some value since we now have
greater confirmation that our local oncologist's chemo regimen is solid - and
I'm responding well to it.
So I guess in the sense that we got a little back-up for what we're doing
locally in terms of chemo, that's a good thing.
In the end - the final recommendation was not to address surgery at this point,
but continue with chemo since I'm responding well. Two of the five tumors in
the liver have calcified and died already. So, he left the door open to surgery
(gastric) if the remaining 3 tumors do the same. He did indicate that early
response to chemo like mine produces much better long term results. (do you
have to be a surgeon to come to that conclusion?)
I have few impressions about that decision - I feel very neutral. I guess its
the best path for now. The thought of another 3-4 months of chemo doesn't
excite me. But we prayed about this before our surgery search started - so I
need to assume that this "open door" by returning to chemo is the one
we should walk through. That assumption is faith, I guess. But being human and
knowing the symptoms I'll face again - that faith is being tested pretty hard.
God knows best - I need to stick to the plan.
We asked the experts, we did our homework, we checked all the top
alternatives...so its now back to chemo.
I'm ready, Jen's here, you're praying - let's go.
p.s. - while in New York, we had a few minutes before our flight home, so we
took a subway to Ground Zero. I cannot begin to describe the enormity of what
we saw and how deeply we were touched - the lives lost, the damage done, the
glaring hole left in the earth (its 7 stories deep - 16 acres wide). For that
moment - my cancer issues disappeared and God gave us renewed perspective. We
looked up and imagined that morning of 9/11. You could feel the explosion, see
the black smoke, sense the chaos and panic. Most visitors near us were silent.
After we shed a few tears for those brave souls, and had paid our respects, I
reached for Jen's hand and we walked back to the subway...quietly thankful for
being alive, having today, and just being here.
7/24 - Wednesday
Got a return call from M.D. Anderson Cancer Center in Houston. They reviewed my
file - and said they don't do surgery on Stage IV Gastric Cancer patients.
O.k....moving on.
7/23 - Tuesday
Work day.
7/22 - Monday
Work day today.
Our jog today took me 1,000 yards before we had to walk again.
7/20 - Saturday
Did some pressure-cleaning around the house...trimmed a few trees. Felt good to
be outside and working up a sweat.
Metal mouth is completely gone. It was a good day.
7/19 - Friday.
Work day.
I tried to run/jog during my walk with Jen just to see how it felt. After 800
yards, my heart rate was nearing 190. Red-blood count is still low...will have
to take it slow.
7/18 - Thursday
I've not been able to write much the past few days - we're in the middle of one
of the most crazy weeks since I was diagnosed.
I'm going to keep this simple - but you might want to sit down...its a
roller-coaster.
Short version - surgery might not work.
Long version - then again it might.
Here's the deal:
Jen and I have been under the impression that if chemo could shrink the tumors
to the "surgical threshhold" of 2 cm or less, I'm home free. Just cut
them out...then follow up with some "maintenance" chemo after
surgery.
Its not that simple - not even close.
First, let me hit you between the eyes with the statistical averages...then
I'll describe what the most recent PET scan told us. I know I'm not in the
"average" range for any of this...but let's just start there.
My initial prognosis in February was 9 months. That's right, 9 MONTHS. So by
the averages, by November, 2002 - I was supposed to be in a box, 6 feet under.
God had other plans, and I responded wonderfully to chemo - so the 9 month
figure went out the window. Oncologist said he's amazed.
O.k....so we continue with the averages for a moment. The new
"number" is 24 months. A "successful" surgery stretches 24
months into 37 months. Not cure - but 37 months.
I began to ask - "what happened to the word "cure".
Here's where the PET scan comes in. My most recent PET scan revealed just a bit
more than my oncologist expected remaining in my stomach. He thought that since
my liver tumors (visible on the earlier CT scan) had all but disappeared, so
might the stomach tumor.
Not so.
However, since the stomach tumor was less than half its original size, the
oncologist decided to continue his consultation with the local surgeon just to
get an idea what my chances were for surgery with a "curative
intent."
Oh yeah, let me throw in another tidbit - there is no patient on record
anywhere that experienced surgery as a Stage IV metastatic gastric cancer
patient with the result being a cure. Never. Doing surgery to cure in this case
is unprecedented.
Well - I guess the local surgeon went back to the "averages" book. He
said that surgery in Stage IV gastric cancer - metastatic to the liver - has
historically revealed an abundance of peritoneal micro-metastises - which means
there was likely many super tiny tumor cells already growing in my abdominal
cavity - undetectable by CT scan or PET scan.
That assumption was based on the fact that my liver tumors and stomach tumor
were still present - even though they had shrunken considerably. If chemo had
killed them all - then it could be more safely assumed the perotineal cancer
cells were also dead.
He could do the surgery, but he was not at all optimistic about the expected
outcome...nor about the surgery having any beneficial impact on my
survivability. In essence, it would be this horrendous surgery, 4-6 months of
recovery...for nothing.
Well...that was not exactly what we expected.
All that said, our oncologist presented four options to us:
1. Continue same chemo,
2. Suspend chemo, but restart it if tumor activity restarted,
3. Change chemo now, to stay ahead of tumor resistance,
4. Surgery, regardless what the surgeon said.
Which do you pick?
Yep...that's how we felt. How in the world do you choose?
Go with surgery and risk it being worthless...loosing valuable time, or restart
chemo to continue "shrinkage" for as long as I can stand it and get
another round of scans in about 6 weeks to see if more has disappeared.
Well, we gathered our thoughts and just sat there awhile. Silent, thinking,
praying. It hit Jen really hard - she's tired, been doing relentless research
so many late nights for weeks on end. It was time for some good news. Me - I
was a bit more steady this time. Not shocked, not surprised, not anything.
I just sat there.
After we sat in silence for what seemed like forever, I said, "O.k....how
about if we hear from some other surgeons?" That was sort of the original
plan anyway - the local surgeon just deflated our sails little a bit.
Our oncolgist was very much in favor of our efforts to consult other surgeons -
offering to get on the phone for us if needed.
That's where we are now...surgeon searching. We had always been doing that -
now it became a mission.
So we went for broke.
Just yesterday, Jen faxed my file to some of the top U.S. surgeons at Memorial
Sloan-Kettering (MSK) in New York, and to M.D. Anderson in Houston.
You're not going to believe this, but it seemed like barely two (2) hours after
that fax went through, we get a call from MSK.
Jen called me and said their top guy wanted to see us. Wow...the top expert in
the country in gastric surgery. This ought to be interesting.
So, ready or not, next week we're seeing him to help decide the path ahead.
He may suggest further chemo, since its working so well. He may suggest slicing
me open. He may suggest having a "look around" first using
laproscopy. He's an expert on laproscopic staging - which is determing exactly
how far the cancer has spread in the abdomen by using a simple laproscope.
Saves on the surgical impact.
Despite it being one unbelievable week - our faith is unshaken, our resolve
remains strong. Regardless the outcome, we're hanging tough and continue to
move forward. What else are you going to do? I'm sure anyone would do the same.
Its been a long week - certainly a roller-coaster. But God's peace continues to
amaze me...and we're o.k
Thanks for your prayers...more than I can say.
Update to follow as we know more.
7/14 - Sunday
Good day - church, BBQ, nap, workout, etc.
Its been 16 days since last chemo...the longest stretch since 3/1/02. I still
have some lingering metal mouth, my feet are still numb, and my hair and
eyelashes look weird...but man, does it feel good to be getting that poison out
of my system. You just have no idea. Jen said when I was on chemo, I had this
walking aura of misery around me. I didn't know that, but looking back, it
sucked. I've not had anything worse ever happen to me. But it worked...so
that's just the way it is. I'm sure there are plenty of worse cases of chemo,
and I do give those patients lots of credit for enduring much worse
side-effects. I got enough of a taste to last me a long while.
Here's a decent website describing the stomach portion of my surgery. The
procedure is formally called a "Proximal subtotal gastrectomy"
(removing the top 2/3 of the stomach):
http://www.yoursurgery.com/ProcedureDetails.cfm?BR=1&Proc=23
The liver portion of the surgery - Radiofrequency Ablation (RFA) simply zaps
the tumors with radiowaves, cooking them with heat from the inside out. Its the
less risky portion of the surgery, and requires much less expertise. Often, if
this is the only surgical procedure being performed, a radiologist performs it.
Our hunt for a top surgeon is primarily driven by the complexity of the gastric
resection...so we're looking for a gastric specialist.
7/13 - Saturday
Worked out with Jen - she's my trainer. We also walked together.
Cancer has been amazing for our relationship. I'm growing up quick, and Jen and
I are more connected than I ever thought possible. We have few low points.
Little petty things don't matter that much anymore. Its been a very deepening
experience. A life-threatening disease is not the marital enhancement method I
would have chosen, but I guess God had something different in mind.
During our walk, I asked Jen, of all the variables bringing us to this point in
my treatment, what made the most impact: my improved lifestyle & nutrition,
chemo, prayer, or God. She replied - I guess we'll never know.
That's just how its been.
I truly believe prayer works, and God's got something more for me to do on this
earth. I've totalled two cars, so He could have taken be earlier quite easily.
I choose to believe this cancer was just a huge wake-up call. I think many of
us have them, just in various forms.
I am not of the belief that sitting at home, doing nothing and forcing God to
"show up" and heal me would have worked. Who am I to force Him to
perform a miracle. I do believe, however, that faith coupled with using the gut
instinct God gave you (like bold forward intelligent actions into the unknown)
can often be a wonderful mixture. Its worked so far.
Our walks have been good. Jen and I wonder about things together...sometimes in
fervent search for answers, other times content to just be. That's how we live
each day now...and it feels good.
I hope you are well, content, safe and at peace.
7/12 - Friday
At work.
7/11 - Thursday
CT scan results presented by our oncologist. Good news - God did it again. He's
continuing to heal me. Of the six (6) tumors in my liver, 4 have shrunk to
below 2.0 cm (down from 6.0 cm on 3/1/02) and 2 have calcified and died
completely.
(recent reports indicate I only have 5 tumors in my liver...earlier reports
said 5-6...will have to check to ensure we didn't kill one off completely
(that's a good thing) - or if the earlier "5-6 tumors" now is more
clearly defined at only 5).
Here's the radiologist's verbatim report:
"FINDINGS: An abdominal CT scan with and without contrast was performed.
There is a 1.9 cm low density area that does not enhance along the
inferior/medial portion of the right lobe of the liver. There is a second
lesion along the lateral aspect of the right lobe of the liver measuring 1.4
cm. There is a third small calcified lesion near the interlobar fissure that
measures 1.0 cm in size. There is a fourth larger calcified lesion that
measures 1.8 cm in the upper portion of the right lobe adn a fifth 6 mm lesion
near the dome of the right lobe of the liver. There are no masses involving the
pancreas or kidneys. There are a few small shotty retroperitoneal nodes. The
spleen is about 11 cm in size. A review of the previous study from May 23, 2002
reveals no major interval change, except for very slight diminution in the size
of the largest lesion just anterior to the right kidney in the lower portion of
the right lobe of the liver. This measured almost 2 cm at that time. The rest
of the lesions, including the calcified lesions are unchanged.
IMPRESSION:
(1) Over a 6-week interval, there has been no increase in the size of the five
suspected metastatic lesions in the liver.
(2) The largest lesion in the inferior portion of the right lobe of the liver
adjacent to the anterior aspect of the right kidney is probably about .2 cm
smaller that is was on the previous exam.
(3) The other lesions including the calcified lesions are basically unchanged.
(4) No new retroperitoneal masses or intra-adbominal masses are evident at this
time."
So, here's Joel's version - chemo shrunk the tumors (or killed them) enough
during the past 4 months to make me a surgical candidate.
My oncologist said some pretty amazing things to us. He confided that he didn't
think I'd get this far - your prayers made the difference - he's amazed. He
specifically said surgery is the only chance for cure...and that there is no
published account of anyone in the U.S. ever extending their life through chemo
and surgery coming from the condition I presented in February - metastatic
Stage IV gastric cancer.
And he used the word "cure"...wow.
Jen, as always, is plowing full speed ahead to find and ask the top surgeons in
the U.S. to review my records and to see if they'll take me in for surgery.
This surgery is a big deal, highly invasive, high-risk and only one shot to cut
enough to get all the cancer cells out. That said, we're searching for the top
gastric surgeon we can find. Both M.D. Anderson (Houston) and Memorial
Sloan-Kettering (New York) have agreed to review my file.
My oncologist said now is the time to do surgery. Timing is everything. You
want to peform the surgery when you feel the chemo has done all it can, and the
tumors are at their smallest. The goal is to halt chemo and do surgery before
the tumors gain a foothold, grow resistant to the chemo and bounce back. They
don't grow rapidly overnight, but within several weeks, it can happen.
In my case, that time appears to be now.
We are once again faced with the daunting task of making a medical choice with
little information: selecting a surgeon from a choice of several. How that
happens is beyond us, although Jen is getting amazingly good at studying the
clinical literature and noticing which surgeon is most successful.
Its not like choosing a plumber. There's a bit more at stake, and I have little
idea what the qualifications are. Jen and I can only assume that if you publish
alot in the literature, you come from a highly specialized facility, and you
are known for being an ace at this specific surgery - its good enough. That and
asking God to guide our efforts once again is the only way through this.
As we plow ahead, we can only trust God will make the right surgeon ready and
available at the right time. That's where your prayers are needed now.
For timing's sake - we assume surgery will take place in the next 2-4 weeks.
I'm working out at home, trying to get my body ready. I get cut wide-open, my
organs moved around a bit, have radio-ablation performed on my liver tumors,
then have 2/3 of my stomach removed. After sewing me back up - I hear the
hospital stay is about 10 days, followed by a 6-month recovery for the wound to
heal and my remaining stomach to adapt/enlarge.
With my stomach 60% smaller, they say you loose up to 20% of your body weight
during recovery (for me, that's 30-40 lbs). As a result, most of the recovery
is regaining your stregnth - you're using a walker for the first few weeks
while eating nothing but liquid meal shakes.
I can think of other weight loss plans I'd rather try...but this will work for
now.
7/10 - Wednesday
CT scan #3...results tomorrow.
7/2 - 7/9 - Tuesday-Tuesday
Home with family and friends for Fourth of July. Great to see everyone, share
stories and just be with them. Being in the presence of loved ones transcends
any words. Thanks for the great time guys!
7/1 - Monday
Trip to D.C. for new job. Still wearing mask on plane...looks stupid but keeps
me a bit more "germ-safe".
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