At dawn, I was admitted to the hospital and taken to a “regular”
hospital room while a team of doctors discussed how best to treat me. After a few short hours, I was moved to an
ICU room at the top floor of the hospital so I could have constant RN supervision
while I waited for an upcoming procedure to hopefully stop the bleeding. Their hypothesis, based on the scan, was that
the main liver tumor in my left lobe had begun to bleed. This is not uncommon with liver tumors since
they tend to be very vascularized (multiple blood sources/vessels attach
themselves unnaturally to the tumor).
The procedure they planned to use to stop the bleeding is called liver
embolization. The surgical process of
embolization is similar to the Y90
procedure I had in September 2011. The
doctors insert a tube through the femoral artery, located in the groin (yes, gents
my groin was “attacked” again), and with a variety of complex methods and
machines figure out which blood vessels are connected to the liver. They then use tiny coils to block the blood
vessels from supplying any additional blood directly to the tumor.
My embolization took 3-4 hours and the doctors felt they
were able to block off 80-90% of the blood supply to the main tumor in the left
lobe of my liver while also stopping the internal bleeding. However, only time and future blood tests
could confirm this. It turns out they
were definitely able to stop the bleeding because my hematocrit levels
stabilized & started to head back up to a goal of 29-30. My hematocrit
levels had been dropping (low 20’s) since I’d been in the hospital, despite the
bags of blood they had been pumping into my IV, because the internal bleeding
was unresolved. I do remember going back to my room after the
embolization and being (mentally) hungry because I hadn’t eaten anything in
almost 2 days – I should eat something after going so long without anything,
right? I asked the RN who then asked the
doctors if I could eat. They both said
yes so I was given a menu to order some food.
I tried to go bland with a grilled cheese and applesauce. About three bites into the meal, I knew
eating was a bad, bad choice. Severe
pain came screaming back at me. It felt
like my whole stomach was knotted into a severe cramp and that someone was
stabbing me. I spent the rest of the
night battling the pain and can’t remember if I slept at all.
In addition to the bout of severe pain from eating after the
embolization and associated lack of sleep, this whole time, I had been
receiving a pretty consistent high dose of pain medication. Since my liver wasn’t functioning properly, my
body wasn’t processing the medication as quickly as it was being
administered. As a result of that and
decreasing vital signs, I have absolutely no recollection of what happened the
next 36 hours so I am asking my wife, Michelle, who was lovingly by my side the
whole time I was in the hospital to guest blog and fill in the blanks about
what happened.
The next 36 hours or so are probably best left forgotten,
however I’ll do my best to describe the events as much as my blurry
recollection will allow! Thursday was
mostly consumed with pain management and monitoring basic functions. The ICU team (doctors from the ICU itself,
the gastroenterologists, the oncologists, the infectious disease doctors) is
something like a Parade of Stars, with the nuance of the Stars often failing to
be on the same page and the caregiver having to connect their dots to keep the
patient as comfortable as possible. Rhone’s
vital signs and breathing became increasingly worse into Friday, and the GI
fellow called me to say that they wanted to move forward with the ERCP
procedure that had been scheduled for that week, but as recently as hours
before had been deemed something we’d reconsider in a few weeks. Fortunately, right around that time our good
friend Dr. Bob had come by to visit and offered some amazing moral support as I
weighed whether to allow the procedure to go forward. The GI doctors felt it was urgent do to the
procedure as some of Rhone’s symptoms that had to be addressed might be caused
by the stents in the bile ducts. The
anesthesiologist pretty bluntly described going forward as ‘high risk.’ While I asked Rhone what he wanted to do, I
knew he really was not in the state to properly evaluate the situation. So,
after asking as many questions as I could – off he went. It was a huge relief when Rhone’s parents,
Bob and I were told that he had done ‘much better than expected’ and they
considered the procedure a success. He
was on his way back to ICU. That’s where
(in retrospect) some of the more comical behavior began. That night and the following, Rhone was
hellbent on getting out of bed. He came
very close to being tied down and quite honestly I probably would have let it
happen at 3 in the morning after several days of little to no sleep! Fortunately for all concerned, with recovery
underway and some adjustments to the meds Rhone increasingly gained his
cooperativeness back, his vital signs improved, and he was ready to head to the
‘normal’ floor. So, on Sunday the 10th
we headed to “7SE” and a week of further recovery.
After a week of recovering, trying to sleep, and waiting for
my blood counts and vital signs to stabilize, I was feeling better and itching
to get out of the hospital. I hadn’t
showered, I hadn’t gone outside or exposed my face to fresh or sunlight, and I
was tired of the crappy food offered to patients who are supposed to be
recovering. My primary team of oncology
doctors felt I was stable enough to return home on Sunday, June 17th
with a few conditions placed on my release.
I went home with a forced oxygen tube that wrapped around my ears and
under my nose, I was to rest as much as possible, and get up to walk around my
condo every once in a while. Sold! Those terms were completely acceptable to me,
in fact, I would have signed on for a lot more regulations. I felt like a fragile old man as I was placed
in a wheelchair with my trusty oxygen container next to me. The ride home was uneventful, I was just
happy to be out of there, and I was eager to watch the final round of the US
Open with my wife and parents.
A few days later, I saw my new oncologist, Dr. Bill
Harris. We had a very sobering
conversation about how sick I truly was in the hospital and how lucky I was to
be out of the hospital so quickly. Both
he and the doctors treating me in the hospital were surprised. Although I was out of the hospital, I’m not yet
out of the woods. The CT scan that was
taken in the hospital showed that my lung tumors and my liver tumors, as well
as the small lymph node tumors around the liver had all grown – the degree of
growth was not discussed. This meant
that the chemo pill (lenollidimide) I started taking a few months back had been
wholly ineffective on my cancer, which was disappointing since the side effects
of that pill were the worst I’d experienced in recent memory. I now have to find another form of chemo to
treat my cancer. First, I’d like the new
chemo to stop the growth and give me more time. As a bonus, I’d like to look for something
that will elicit a shrinkage response.
The big problem right now is that my body, especially my liver, isn’t
healthy enough to withstand chemotherapy in any form. It’s ok to wait for 4 weeks from my hospital
release (now ~2 weeks) so my body can heal, but waiting too long to “get
better” from this recent episode might put me at a point where the cancer would
be unchecked and have free reign to grow/spread further. However, if I go with chemo too early, it could
lead to liver failure which would almost certainly take me out quicker than the
cancer would. It’s a fine balance.
There are 3 main things that must happen: 1) the
abdomen/belly area must decrease in size and pressure on other internal
organ/areas. I am trying to speed this
along by taking 2 diuretics that hopefully will help flush the coagulated blood
and other fluids that have built up in that region to be reabsorbed into the
body’s blood stream. 2) My nutrition
must improve, with an emphasis on a protein rich diet. While in the hospital, my Albumin, which is a
protein that measures liver function, dipped to alarmingly low levels because I
was not getting sufficient protein or a balanced diet from the hospital
food. Michelle and my parents have been
making meals stuffed with protein so I can eat 4-5 small meals over the course
of the day. Only blood tests can tell if
this is improving. 3) My old nemesis the
Bilirubin must also get better. It
spiked in the hospital and although my eyes are still somewhat yellow, the hope
is that time resting will help it go back down.
For those of you who called, sent texts, visited, and offered to
help in any way, Michelle and I want to express our sincere gratitude. It’s always good to see or hear from friends
and loved ones when you’re stuck in a
hospital for days on end.
Post script……..I was about to the post this the evening of
Thursday June 28th since I was scheduled to see my oncologist
Thursday afternoon. In short, my
oncologist was pleased with the recovery I’d made thus far. The next post gives you an idea of what that
didn’t happen.
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