Early this morning, I wrote the text under "And we're Back!" in preparation of a big surgical procedure on Monday June 12th. Around 11am, my
surgeon called as he had a chance to review the scans I took on Friday and he
felt we needed to change course. While you can read below on why
I’m sick and what we thought the solution would be, the Dr now feels we need to
Pause the Whipple surgery because the lesion on the head of my pancreas has
grown since the 5/29 scan and they’re now seeing something new on the tail of
the pancreas.
His recommendation is to perform an EUS (endoscopic ultrasound),
the 5th one since last August, as he would like to get pathology on the lesion(s).
He contacted Dr. Wani who made himself available to do the EUS tomorrow. He
would also like to add a stint to the bile duct to stop the jaundice and symptoms
I’m experiencing. While he said he could do the Whipple tomorrow, the challenge
is if he has me open on the table and feels concern over the spot at the tail
of the pancreas, he will need to take the whole pancreas leaving me a diabetic.
The scan results have increased the concern for cancer and the processes would
be different if cancer is confirmed.
These were the options presented:
·
EUS and Stint tomorrow:
o
If pathology detects no cancer, they would
reschedule the Whipple as early as next week.
o
If pathology detects cancer, they would
suggest Chemo (approx. 2 month treatment)
§
If chemo eliminates cancer, they would
schedule Whipple
§
If chemo does not kill cancer, they would
not do Whipple.
·
He did not expand on this situation.
·
Do Whipple tomorrow:
o
Could go down as expected and pathology
shows no cancer
o
Could turn into a full removal of pancreas
§
Beneficial if cancerous
§
Bummer if not cancer
So, we decided to cancel tomorrows Whipple and do the EUS &
Stint instead. We’re still waiting for the times and if you check back on the
blog tomorrow, we should have some updated info.
Now, if you want the full story, read below....
Sam
And we’re back!
If this page is familiar, you may have followed
along in 2007-08 as we shared the details of my successful testicular cancer
treatment. Others might have read it at some point in the past 15 years and I’m
sure it’s new for many of you. In 2007, using
a “Blog” was pretty progressive and for us, a great way to frequently share the
journey, especially on days when I didn’t walk to talk. As these
current medical challenges came up last summer, I thought about cracking open
the blog but it wasn’t until the past week that I actually got in there. Yes,
we briefly considered using Instagram, Facebook or Twitter but, by using the
same platform, it connects and interweaves the stories…..
On Tuesday, June 14, 2022, I was at the market and started having
abdominal pain. It was out of the blue, not anything I’d experienced before and
just days before the guys were coming to town for the Dead & Company shows.
While the pain was minimal (and manageable), I made it through the weekend and
just kind of dealt with it until it was finally too much and I went to the ER
on Monday June 27th. They
took blood, did Xray’s, provided me some meds and, without a diagnosis, told me
to connect with my primary ASAP.
I saw my Dr on Tuesday July 5th, he believed I had pancreatitis and mentioned
they saw something on the xray they wanted to follow up with. Over the next few
weeks, I had an Ultrasound, MRI and CT scans all leading up to a call with a GI
Dr who scheduled an EUS (Endoscopic UltraSound) on August 19th. All the imaging provided convincing evidence
of a lesion on my pancreas and the EUS would give them the chance to biopsy it.
On Tuesday August 23rd, The GI Dr told us it was
Pancreatic Cancer and she would refer my case to a surgeon/oncologist and I should
expect to hear from them soon and to start setting up consultation appointments
in the coming weeks. At the same time,
she said there was a delay confirming the cancer diagnosis as the university pathology
was behind and had not examined my sample.
After Labor day, we met with a surgeon who told us about the
Whipple procedure and white boarded it including showing where I had tumor(s)
on my pancreas as he believed there were 2 concerning spots. He described the
procedure, potential need for chemo/radiation after the operation and, as Jen
and I sat stunned in the office, he left for a bit to review my records. When
he returned, he asked how I feel and if I’ve lost any weight. I told him, minus
the flair up in June, I’ve felt good and not lost any weight. He seemed to feel
something was off and said I’m not “presenting” as a typical pancreatic cancer
patient… No weight loss, no jaundice and
pretty healthy. He offered to catch up with the GI doc and follow up as it was
not the right time to schedule the surgery, especially since we’ve not had the
2nd cancer confirmation from pathology.
While I don’t remember the timing, we didn’t hear back from the
GI dr and continually called looking for updates. At this point we still didn’t
have a diagnosis, had heard multiple times how unusual my case was including being
told it “Could” be pancreatitis, Autoimmune pancreatitis, chronic pancreatitis
or pancreatic cancer. At some point, she recommended moving my case over to UC
Health (University of Colorado) to Dr Wani as he is a pancreas specialist who
will figure it out.
The treatment with Wani started in October with him performing
the 2nd EUS although there were similar inconclusive results. More
scans and then another EUS On Monday December 19th. On Tuesday the 20th, we met with
Dr Del Chiaro, the lead surgical oncologist at UC Health. He presented my case
to the Multi-Disciplinary board that morning and they were split on what path
to take: Perform the Whipple or monitor
to see if anything changes. Because the board couldn’t agree, they asked us to
make the decision and preferably by the end of the week so they could schedule the
procedure right after their holiday break.
We left the meeting concerned and upset they would drop the
decision on us and, after a couple days thinking about it, I email my health
advocate saying we were not prepared to make the decision and are seeking
additional opinions. Over the next few
weeks, we spoke with a couple additional dr’s, including one from Cedars Sinai
and one from Swedish here is Denver. Both felt the Whipple was too aggressive and
monitoring would be their recommendation.
When we met up with Del Chiaro, he understood and continued to impress there
are no guarantees… if it’s cancerous or not, if I can live with it or not. He
just wanted to be clear we understood anything could happen.
In March, had the 4th EUS and more scans then another
Dr’s visit. We agreed to monitor my
health, they scheduled blood and scans for September with the caveat if I
started losing weight, had abdominal pain or showed signs of Jaundice, I should
get to the ER as soon as possible.
To celebrate Addison’s high school graduation and pending
send off to Colorado State University, we planned a family trip and left for
Nags Head, NC on Friday May 27th. On Sunday, I wasn’t feeling great
and really thought it had to do with where we ate breakfast but as of Monday, I
was having abdominal pain as well as feeling like I had acid reflux at the same
time. I told Jennifer I wasn’t feeling well and Addison mentioned my eyes were
yellow. On Memorial Day, we ended up at the Outer Banks ER. They pulled blood
and did a scan and told us my Bilirubin score was 5.8, significantly higher
than the expected .1-1.2 range. The ER doc suggested I see my Dr as soon as I
get home. It was also interesting because
I’d told the Dr about the lesion on my pancreas and later, a nurse came in asking me for some medical
history and was visibly relieved when I mentioned the pancreas stuff. She thought
she was going to have to tell me something was showing on the scans.
While it’s hard to describe exactly how I felt, it was a
combination of pain, severe nausea and a feeling of dehydration. It was made a
little better as I had pain meds with me. Over the course of our 8 days in the Outer
Banks, it rained 7 days… and that was
okay as we spent a lot of time at our AirBnb which turned out to be good for
me. I wasn’t eating much and needed to rest. I was able to get into UC Health’s
portal, tell them about my ER Visit including the Bilirubin score and set up an
appointment for Tuesday the 6th.
On Tuesday, they moved my appointment from 4pm to 10:15am
and right when he walked in, Del Chairo saw that I was jaundice and ordered
more blood test. He asked me to come in
at the time because he had a noon meeting with the board and wanted to present
my case with the new info including bloodwork showing the bilirubin score (now over
6). I checked in later through the portal and my nurse said they were reviewing
the plan and would suggest surgery. She then asked us to come in at 8am the
following day to meet with the Dr.
At our meeting on Wednesday, Del Chairo said the board unanimously
agreed the Whipple is the correct path for my case. While they cant say if the
lesion is cancerous, other things have come into play, most importantly, a
block of the bile duct causing the jaundice. Once that happens, it doesn’t go away
and some form of correction is the only relief. While he said, if the bilirubin
were to jump, they could do an emergency surgery and place a stint, that again
will not solve the issue of a blocked bile duct. Why is it blocked, they don’t know
and wont until the surgery. As I’ve come to like Del Chairo, for the first
time, he made a decision (recommended the surgery) and also said if he was
presented my situation as his own, he would agree to the surgery as there are
no other options.
He asked us to consider and discuss the surgery and come
back the following morning with questions or concerns. On Thursday, I signed the consent form and
then had a meeting with the nurse where she provided details about the surgery including
prep for the weekend. They pulled more blood and then I went to a pre procedure
meeting with Anesthesiology. They
reviewed my medical history, did an EKG and, of course, they wanted more blood.
I was also scheduled for scans but the Dr wanted to include pelvic and chest
scans so they rescheduled them for Friday.
On Friday I went to UC Health’s Cherry Creek office for
scans. The room was bright with a fake skylight and as I lay there, getting
moved into the machine, it felt like I was watching a movie. Sick person slowly
going into the machine, alone in the room when a robotic voice says “Breathe in
and hold….. now breathe” and then the
tech, safely sitting behind the glass says ”it’s now time for the contrast”
just before my entire body heats up.
At the end the tech, who clearly had all of my details in
front of him, said something like “looks like you’re having surgery on Monday”
to which I nodded and he asked what kind.
As I said “Whipple”, the look on his face gave away maybe a bit of
surprise as well as horror for the pending procedure.
Friday was the last day I could eat and, with the scans in
Cherry Creek, I was able to get to Moe’s for my favorite bagel. Although I haven’t
had an appetite for the past few weeks, I did eat about half the bagel. I was weighed in the Dr’s office on Tuesday
and when weighed again on Wednesday, I was down 2 lbs. When weighed on Thursday,
I was down 2lbs from Wednesday. Not sure total weight loss at this point but it
will be considerable since it will be weeks before eating solid food. Although I wasn’t too hungry, we picked up El
Pollo Loco on Friday as the perfect last meal before surgery. Since Saturday morning,
it’s a clear liquid diet only until the operation.
So… That’s how I got here and now, whats next:
A Whipple procedure — also known as a
pancreaticoduodenectomy — is a complex operation to remove the head of the
pancreas, the first part of the small intestine (duodenum), the gallbladder and
the bile duct.
The Whipple procedure is used to treat tumors and other
disorders of the pancreas, intestine and bile duct. It is the most often used
surgery to treat pancreatic cancer that's confined to the head of the pancreas.
After performing the Whipple procedure, your surgeon reconnects the remaining
organs to allow you to digest food normally after surgery.
The Whipple procedure is a difficult and demanding operation and
can have serious risks. However, this surgery is often lifesaving, particularly
for people with cancer. (from Mayo Clinic)
If you’re interested, lots of great videos about the surgery
as well as recovery available on YouTube. As discussed with the Dr, he wont
know how much of the pancreas will come out until he is in there. The more left
behind, the better and, if he has to take the entire pancreas, the result would
be instant diabetic. While he doesn’t expect it, it’s a possibility. Main concerns after the surgery are infection
and leakage where organs have been reconnected, specifically with the pancreas.
I’ve heard the pancreas described as soft as butter and they have to connect
the remaining pancreas into the intestines. Any leakage of fluids into the
abdominal cavity is problematic.
As we’ve heard from the first surgeon we talked with through
the current dr and all the reading/vidoes I’ve watched, a consistent theme is
you will never be the same after the Whipple. While we’re cautiously optimistic
for minimal impact, we just don’t know how my body will react. Appetite and everything relating to digestion
are the most common challenges. Its expected, as I start eating after surgery, I’ll
have to take pancreatic enzyme replacement therapy with all food going forward.
The enzymes are made from pigs and really no option but to take them. Well I
guess the option is food not digesting, not getting nutrients from food and
chronic diarrhea… so, there are options.
On Surgery day, check in is at 6am and the procedure is
expected to start at 8:30am. Timing depends on what they find and we’ve heard it’s
possible it could be as quick as 4 hours and potentially as long as 10.
They expect about 10 days in the ICU although they quote the
range as 7-14 days. The nurse mentioned they’ll have me up walking the next day
and I’ll have multiple drainage tubes. The goal is to have those removed before
coming home but it’s something they monitor and there is a possibility I’ll come
home with them. As we get closer to leaving the hospital, they will determine
if we’ll need some in home assistance or if things are good enough we can
manage.
Similar to time in the hospital, the range for total recovery
has been stated between 6-10 weeks if things go well. I’ll do my part to get
back as quickly as possible although I’m under the impression I wont enjoy a
good meal until mid-late August which is a bummer. Also had a chance to look at
my calendar and hard to block off 10 weeks knowing I’ll have to miss or cancel
many important things. Nephew’s high
school graduation, Dead & Company’s 3 Boulder shows, multiple family
birthday’s, July Hockey tourney, skating 3 times a week…. While I plan on being back as soon as possible,
we’re taking Addy up to school in Mid August and I wont miss that one.
Jennifer will post here with updates when she can and as
soon as I’m feeling good, I will as well.
As there was with the prior cancer, we can always find good
things in the middle of a medical event. While there have already been many, here
are just a few:
· While reviewing my medical history with the Anesthesiology
PA, she asked about Meds and I told her I don’t take any daily… only have some as
needed for flair ups and she was glad to hear it. She said something like “you don’t
do chronic illness, you just go big every once in a while” which I thought was
pretty funny and true.
·
The concern and offers of help for my family. It’s
amazing how aware and kind you are and we appreciate it. People near and far
have offered anything they can to help and I know, if asked, they would provide
assistance. It’s comforting and reduces my worries.
·
How you can count on family.
· I'm going to have this 8+ inch scar above my bell button and get to come up with some fantastic story about how I got it.... maybe a knife fight in Tijuana, parachute didnt open and got caught in a tree or maybe took a slapshot right in the belly. Last one seems unlikely as all the guys I play with have lousy shots.
Like I’ve said before, thank you if you made it this far. It
feels like I’m sharing a lot and glad to do it…. Even if it’s occasionally just
my ramblings. Feel free to share this with others if you like.
I’ll be back.
Sam
