This afternoon we met with Dr. Steinberg, who gave us the
results of the pathology of the bladder. prostate, and lymph nodes. Anytime a doctor starts his comments
with “this is not the news we were hoping for,” you feel yourself tightening up
inside, waiting for the hammer to fall.
In short, I hit the trifecta:
the bladder cancer was more extensive that previously thought; 12 lymph
nodes had metastatic cancer, and I also had prostate cancer. The prostate cancer is the least
important, since it was all contained within the prostate, and it’s now been
removed.
The bladder cancer was found to have penetrated the outer
fatty layer of the bladder, which means that I have been “upstaged” to pT3a,
from pT2b. The higher the staging,
the more serious the cancer. The
staging drives the future treatment, which I’ll get to later.
Most serious is the fact that, of the 61 lymph nodes that
Dr. Steinberg removed from my pelvis and abdomen (35 from the right side, 26
from the left), 12 on the right side were found to have metastatic bladder
cancer. The prior scans had showed
only three that appeared to be increased in size, and during surgery Dr.
Steinberg did not see any that visually appeared to be suffering from
necrosis. That’s why he was so
hopeful coming out of the surgery.
But the pathology pops that balloon.
Meanwhile, my recovery from the surgery is proceeding
faster than usual. It helps that I
am so young (relatively speaking).
The LPN removed the 27 staples that had closed my primary incision, and
covered it with steri-strips. They
decided to leave the Foley catheter in for another week, but cleared me to
travel home tomorrow. I’m looking
forward to that.
But we’re still in shock from the bad news from the pathology. Dr. Steinberg said, “we’re in uncharted
waters here.” There is no
established treatment for where I’m currently at. The first line of chemotherapy failed, and there is no
proven second line of defense. Dr.
Steinberg said that he’d like to be able to identify the specific genetic
pathways that my cancer is taking to spread, then give me a therapeutic
treatment that would stop that – only he didn’t know how to do that. He was quite candid on admitting the
limits of his knowledge, and he’s one of the leaders in this field. I got the sense that he was telling me
that he’d given it his best shot, it didn’t work, and he was now turning me
over to the oncologists for further treatment. He did say that he was going to have dinner this weekend with Dr. Schoenberg, my doctor from Johns Hopkins, and that they were going to discuss my case in detail.
He recommended that we investigate clinical trials, and
identified one in particular. I’ll
write more about that after I’ve had a chance to read about it and contact the
investigators. Dr. Steinberg said
that clinic trials were like throwing darts – maybe you’d get a bulls-eye, but
more likely than not it would have little beneficial effect. He did note that he had a patient who
had T3 and positive nodes, and five years later she was cancer-free, so you
never know how it will go.
So right now Jennifer and I are sitting at Promontory Point,
which juts into Lake Michigan at the end of 55th Street. While we had hoped for better news, we
both had understood that the pathology likely would confirm the fact of
metastases. The path going forward
is far from clear. Our days and
weeks will be saddled with the looming uncertainty of whether the cancer will
show up elsewhere, and if so, when, where, and whether it can be treated. I accept that the odds are not in my
favor. I also accept that I have
no control over the course of this disease. I can seek out the best treatment, find the sharpest darts
to throw, and trust in the professionals to aim them as best that they
can. But I know that they are all
blindfolded, as am I.
My vision is clear to the things I can control. I can live one day at a time, grateful
for each moment that I have to spend time with my family and friends. I can strengthen my faith. I can live with honor and dignity,
doing unto others as I would have them do unto me.
I'll start praying for really sharp darts handled by those with really good aim.
ReplyDeleteSucks...
ReplyDeleteSorry the news is not what everyone hoped for. I do know that there is always hope. We are praying!
ReplyDeleteoh man. well if you bring the same energy to the fight as you did to that deep dish, then you'll be in good shape.
ReplyDeleteLove you Uncle Kenny and all. Thank you for keeping us updated. Only wish we could be right there, holding your hand in person.
ReplyDeleteSo wanted to comment "Hooray!" Will picture you as the T3 5-years cancer free. I'm encouraged knowing that you distinguish between acceptance and giving up. One day at a time. Looking forward to that day being back here with us soon.
ReplyDeleteKen, plesae know that many people are thinking about you. Eric
ReplyDeleteKen, we will continue to pray for you. Dave and Sally
ReplyDeleteWe are so sorry to hear the news. We know that God knows all and that we don't. We continue to pray for you and family. Your checking into everything is inspiring. We will keep your name on the prayer roll. We love you all!
ReplyDeletejamie and family
I'm with Ravonne, that sucks . . . You'll be in our thoughts and prayers.
ReplyDeleteWhen God closes a door, he opens a window. Just don't jump out of that window, Ken, there's more to this story. See you in church.
ReplyDeleteJudy and Tom