|
October
2002
10/31 - Thursday
PET scan.
10/26 - 28 (Saturday - Monday)
Jen and I shared a great weekend off - partly shared with friends at a local
cottage, partly alone reflecting on life by the ocean.
Details to follow, but many issues discussed and lots of good feelings shared.
We are actually leading our lives more richly because of cancer. We ponder things
a bit more, relax more often, enjoy each other's company, enjoy what each and
every day brings...and never, ever, take a sunrise for granted.
10/25 - Friday
Dr. visit to interpret the CT scan results. More good news - although its
slowing down a bit. The largest tumor shrunk from 1.5 cm down to 1.4 cm.
We're about stable at this point.
What does that mean?
Well...with the pace of reduction slowing down, several theories exist.
Theory (1): The tumor being seen on CT scans is actually necrotic tissue (dead)
and the portions visible on CT scan are just scar tissue staying put at about
1.5cm (this would be good). The only way to confirm actual internal tumor
activity is by a PET scan - we'll have one next week.
Theory (2): We've reached "stable disease" - they are still alive,
but have reached equillibrium - the tumor cell growth is about equal to the
tumor cell death caused by chemo (this would also be o.k. - though it means
living with chemo treatments for the long haul...at least its not "progressive
disease").
Theory (3): We've maxed out this chemo regimen - and need to switch chemo
cocktails to keep the tumors shrinking.
Most probable scenario - I get a PET scan next week, it determines there is
still some tumor activity, so chemo is still necessary and we switch to a new
chemo cocktail in two weeks.
We also talked about another endoscopy to determine what's up with the primary
GE junction tumor. Talk of surgery to remove that tumor came up again since the
liver "clean" stage is potentially within sight.
All in all - nothing firm to report until the PET scan next week reveals more
on actual tumor activity. Its a classic wait and see moment...oh well. God's
got a plan...we're just following it with the best medical tools and personal
persistence we can muster. That's all we can do. Your prayers and encouragement
help alot.
p.s. Tragic airplane crash today ending in Senator Paul Wellstone's death. I'm
a Republican most of the time - but hey, he was an honorable guy, one of our
Senators and serving our country. I wonder if he had cancer? His sons are
without parents now. Tragic accident - but it drove home how much God has given
Jen and I. Not sudden death like the Senator, but instead many happy days.
You've simply got to seek and find that silver lining. We all have one. If
you're still breathing and reading this...you still have a silver lining for
which to be thankful.
Thanks for your prayers - they work.
10/23 - Wednesday
CT scan.
10/21 - 10/22
At work (Coast Guard). Feeling 10000% better than last week.
I felt better, but Jen got sick...(seems to be a revolving door around here).
Must be the same way with kids in the family around flu season.
Well, here's the short version...Jen was traveling this weekend - and got a
migraine bad enough to just knock her down. She threw up in the rental car on
the way to the airport, threw up on leg one of her flight, threw up on leg two
of the flight, and carried an airsick bag with us in the car on the drive home.
Sounds like a miserable trip.
Fortunately, "Joel's Pharmacy" was open for business! If chemo
patients are good for something, its that we've been through so many weird
procedures we've got some great drugs on hand at any given moment.
Well, we found a few tasty little pills that gave Jen a really nice, deep nap
for about a day....and knocked that migraine right out of town...:-)
10/19 - Saturday
No fluids have tried to make an emergency exit from my body in the last 24
hours.
Things are looking up.
10/18 - Friday
No chemo - off.
10/13-18 - Sunday - Friday
Let's just say its been a rough week...and try to forget it ever happened.
It started with vomiting blood on Sunday from the gastric tumor ulcerating
again. Then the cholinergic reaction kicked in.
What's a cholinergic reaction?
Technically - it has to do with acetylcholine. You'll have to ask Jen if you
want more details than that.
But in layman's terms - recall a really rough week I had several months ago
following a chemo session. Won't go into details, but without catching certain
symptoms during the chemo session (hot flashes, diarrhea, etc.) this reaction
is missed - and it starts the ball rolling.
Using a certain injection during chemo (Atropine) - you can avoid it. But
without it, my just missing that its happening, you'll begin a week-long bout
with your bodies most amazing desire to expel every spare ounce of fluid
possible - through any opening possible. If you're not facing the toilet,
you're sitting on it. Immodium A-D and Lomotil become your drugs of choice. And
food is simply out of the question. Any food I did try consisted of bananas,
rice, apples or toast - so as not to further bother your already explosive
digestive system.
During these reactions, you pray alot - for God to cure you quickly or take you
home right now. There are few things I've been through more miserable than a
cholinergic reaction. Cramps like you have never felt - and vomiting when
nothing is there to throw up. When its done, you feel like someone just punched
you in the gut for days. You're mostly horizontal in bed between bathroom
sessions.
If it makes you cry just thinking about it, then you'll know how it feels
during the ordeal. After 5 days, I'm just now able to sit up and type. I
anticipate it will taper off in a few days - the last one lasted 8 days.
Not much else to write - I'll try pen some more thoughts when this episode is
through.
Thanks for your prayers...sorry about not writing back much on e-mail, it hurts
to sit up for very long. I'll be in touch soon, I promise.
Other than that...it was a beautiful fall day in Florida today.
10/12 - Saturday (our 11th Anniversary!)
Good dose of metal mouth today.
Chemo yesterday wasn't bad. I only wretched once - fighting off most vomiting
between napping and waking (Benadryl helped that). Jen's brother, John was
visiting and went to chemo with us - what a trooper. Sitting with Jen for the
8-hour ordeal (9-5).
We took some pics of a chemo session - check out the photo gallery.
Not much to illustrate, but it shows you a little. Especially our amazing
care-givers, Dr. Niederman and ongology nurse, Nichole. The other nurse, Laurie
was busy elsewhere tending to patients. They're all busy - seems cancer is
popular in my town.
In two weeks, I get another round of CT scans. Doc is concerned about my numb
fingers and toes. I told him I stepped on the gas once instead of the brake - I
don't think he liked that too much. He said he'd hate to cure me of cancer just
to have me killed in a stupid car wreck. Guess that's not good for the stats.
As a result, my chemo cocktail might change, we'll see. Small detail.
I'm tired, so I'm going to take a nap. Not mure more to write now. Thanks for
your prayers.
10/11 - Friday
Chemo #20
10/4 - Friday
Chemo #19
Been busy on the Coast Guard job lately - its been an "off" chemo
week, so I'm making hay while the sun shines.
I've shifted my focus and attention at work to things more local...so not only
is travel slowing (a good thing for me), but the opportunities locally are
growing (another good thing for me). We sort of made an office we sorely
needed, but also one in which I would be a good fit. Not for a promotion in
rank or pay, but an increase in responsibility. As a Coast Guard government
employee, there is never any more money attached to these types of moves, but
the chance to do things of a more broad, strategic scope is opening up. I enjoy
that. Its an interim office locally to the Caribbean Region.
"Interim" since it takes about a year to actually get the positions
and funding all aligned properly at HQ (D.C.). It will be a "next
step" for me and one I feel comfortable doing in light of Jen's
school-work continuing.
Speaking of which - Jen just finished her Masters coursework with a 4.0 (I'm so
proud of her) and is headed down the homestretch on her thesis - should take no
more than 6 months. Incidentally, she just won a great scholarship she's been
hoping for all summer (again, very proud husband here...). Its worth a $128,000
(4yrs x $32K/yr) to pursue her PhD. It was something she'd applied for in May -
and we were waiting for word on it since July. She's super happy. Although PhD
work in a research field like the biology sciences is a heavy load - typically
another 4-5 years. We'll see - we have lots of complex family factors to
consider. She got the call from Senator Graham's (FL) office two days ago and
will fly to Washington D.C. to receive the award. Its very exciting for her
nonetheless - an honor she's worked hard to achieve. It opens doors for her
future work in the Biotech field (genetics) or offers the chance to teach at
the university level. Show's you who's got the brains in the family!
The scholarship is also an answer to prayer. We've been wondering and praying
about what type of short-term job might work following her Master's degree that
might help out with some of my medical bills (out of pocket insurance is
beginning to take a minor toll on our savings), while also leaving her schedule
flexible enough to possibly have kids (another "challenging" decision
to which we've given much thought and prayer). This scholarship sort of answers
that need in a number of ways. Its annual financial outlay during each of the
four years is $20,000 + tuition ...making it roughly a part-time job for $20K a
year...with complete flexibility on her part...just about what we needed.
Although having kids during that time might be a challenge...we'll see. No
decisions are final, and many options exist. For now, we're just thrilled it
offers Jen many open doors for her future and a huge pat on the back for her
hard work. Its one of the bright spots over the past 8 months for which we are
truly thankful.
I ran into a bit of a rough spot two days ago....partly my own fault. I was
feeling good since it was my "off" chemo week. So me and another two
guys were wrapping up a presentation for some senior executives headed to a
conference. We were working all day on it, and it appeared it might go into the
evening hours to finish. One of the guys had to leave for a family reason, so
its me and our Chief of Staff left working by about 6 p.m. I was feeling o.k...so decided to complete the effort. For some reason, by about 7 p.m. I
felt hot and a fever coming on. By 9, I had the shaking chills. We finished up
at 9:30 and I had to leave. I got home around 10:15 and found out I had a 100.5
fever - the danger zone for someone with low white blood cell count. Jen called
my doctor who immediately sent me to the ER for IV antibiotics - but not
without a good scolding. The blood work showed my white count was just enough
to fight it off - and I broke my fever by 3:00 a.m. I was prescribed oral
antibiotics and sent home by 4:30 a.m. Jen was sleeping by my ER bed the entire
time on a makeshift string of hard plastic chairs with a bunch of those thin
hospital blankets (its freezing in the ER - ever been there?) It was my own
fault for pulling a pre-cancer late night of work...but I had been feeling
fine, and it wasn't my normal routine anymore. Regardless, it didn't make Jen
happy, so it won't be my routine in the near future either.
I took the next day off, feeling a bit beat up. I joked with her when I finally
woke up saying, "I'll just head into work for a few hours, I've got some
memos to finish up."
Without missing a beat, she said, "Over my dead body."
You see how things work in our household...:-)
That's it for recent excitement on my end. I'm headed into chemo in a few
hours, so I'm enjoying my last cup of coffee before the metal mouth
begins...:-)
Thanks for the continued support - short notes, quick e-mails and/or phone
calls. Every single one means alot to me, and helps me see the invisible army
fighting this battle together.
|
