Tuesday I met with my
oncologist for a normal scheduled visit.
It ended up being one of my most emotional visits, which is different,
because most times, I am calm, cool, collect, and it’s more like a business
meeting normally. For once, I didn’t
have my usual notes in hand, strictly speaking from the head and heart.
After vitals were done, spent
15 minutes with his private nurse (she’s always been a sweetheart with me, and
she’s my liaison via e-mail and phone when I need to get a message to him. She could tell right away, that I wasn’t my
normal self, and sensed that something was bothering me. Good thing was after we talked, she prepped
the doctor in advance.
For starters – I was having a
severe pain day, even that early in the morning. I had only been up for 2 hours when I showed
up, and already, my right hip, leg, and foot were in throbbing pain (level 6
easily). Most times I have seen him in
the past, I was not in so much obvious pain.
But I am glad he saw and examined me when I was having a bad moment.
We spent 45 minutes alone, he
pulled up a chair right in front of me and we had a good long talk. There were times that I had tears in my eyes,
and was getting all shaky with my voice, and he picked up on that right
away. And trust me; it’s so not like me
to be that way, either alone or with someone.
I told him, that I was sick and tired of dealing with all of it. The ongoing cancer, the endless bladder
spasms, the chronic pain, the chronic fatigue, and that I can’t always be tough
or put on a happy face. That I felt so
overloaded from the ordeals of the past 5 years combined, it was just too much
for me to handle. So we started breaking down the issues one by one.
On the bladder spasms –
bottom line, even the head of Urology at Duke will not take on my case. Like the head guy at MUSC, he felt that the
only possible cure, is with surgery, but even that wouldn’t guarantee anything,
and more likely would make things worse.
Felt the surgery was too high risk, even with an expert. Since all of the regular meds to treat spasms
are designed to work with a working bladder, there isn’t right now a medicinal
approach to help. Since my bladder is
shriveled up tight, and non functioning, that’s why the meds don’t work. He said its still a shame that my urologist
didn’t leave a portal in place to access my bladder, but nothing can be done
about that now. As painful as they are, I
will have to continue to work through them, and hope, that perhaps one day they
will taper off. Because the bladder
still has all its nerves and vessels attached, the brain is still sending the
wrong signal to it, creating the spasms.
We also did a 180 turn on the
Oncology Rehab. It’s been 2 ½ months
since I dropped out of the program after 25 months. He, me, and my wife, thought it was making
things worse, not better, since I never made any forward progress. Doctor said he could see a marked downhill
difference with me since I have stopped, and feels now, that the therapists
were right, and that they argued that they were helping to keep me from going
backward or getting worse. They were not
worried about the lack of forward progress.
So he wrote me an order to
get back in. I went yesterday, and was
signed back in minutes. They were
thrilled to have me back, and they knew about the Clemson football game honors,
and were happy that I would be representing them. I even get my same therapist back again, who
knows my issues first hand. I start
again next Wednesday. Said I was one of
their favorite long term patients.
This time, my doctor wants me
to try both light massage in some of the damaged areas, and to at least give acupuncture
a shot. He’s not a big believer in it,
but said it just might help give some short term relief. Said I have reached the point, where pain
meds alone aren’t going to do the job.
Also, said if there is any way I can do hydro therapy with my stoma that
would be worth a shot as well. My
oncology rehab center handles all of this, and they have no problem with me
being on Medicare only, which is a huge plus.
As far as me seeing this new
doctor, he’s not happy with how that was going, and neither was I. He was not happy with how I was treated on my
2nd visit, and her general approach and attitude toward his patient.. He (and 4 other doctors), feel strongly that
all my pain and fatigue issues are directly the result of severe radiation
damage. He said again, it’s so
extensive, that it is never going to heal or get better. And that while he admired my quest to find
other diagnoses, that even if I did, it still isn’t going to really change the
bigger picture of things, as it would still involve strong and long term pain
meds, and alternative treatments. Giving
it a different name wouldn’t change much from his perspective.
We mutually agreed, and I have
now canceled any further visits with the new doctor, including the upcoming
nerve study tests. He said that often,
they are very inconclusive tests, and it still wouldn’t change how he would or
wouldn’t treat me. I had forgotten, that
perhaps 15-20 years ago, chasing down some strange neruo problems, I had
undergone those types of tests, and nothing could be concluded at that time. He had warned me in the past, what could
happen if I went to that type of doctor and if they were running a full fledge
pain management program like they do. It
was interesting that the new doctor treated me poorly on the 2nd
visit, when it was she that suggested on the first visit, that my oncologist
continue to administer my meds and act as my PM. I never once asked, complained, hinted,
winked my eyes, or anything else about pain meds with her. I had already agreed that my doctor would
continue this function with me.
We had a lighter moment. He took the rap for recommending the guy at
MUSC, as long as I took the rap for these last two doctors that I had asked to
be seen. Fair enough.
He was ok with me stepping
out on my own, being my own advocate.
He said I need to come to
terms with where I am at, and I really have for the most part, and that he will
continue to do whatever it takes to preserve what is left of my QOL. As far as pain meds, he is still in the best
position to prescribe whatever I need, now or in the future. On the fentanyl, if needed, I could be dosed
up to 300 mgms, but I am a long way from that level. Plus, and I agree, he needs to reserve some
of the pain med guns for later, when and if mets show up and I start having
those types of pain on top of the existing pain. I even talked to him about switching from
fentanyl to methadone, but he didn’t think it was a good fit for me, and would
be problematic. My interest was because
methadone is dirt cheap, and fentanyl is expensive long term. He reminded me,
that fentanyl was the strongest non-IV administered pain med that is out there,
and that he was pleased that I am very well opiate tolerant, meaning my body
adjusts well to it without any unpleasant side effects.
On the prostate cancer front,
I doubt we talked 3 minutes about it.
Going to stay the course for now.
Still not in favor of having me on any advanced treatments at this
time. Again, aside from not being for
early-HT use (and he presents a strong argument), its all about preserving my
QOL for as long as possible. He’s hoping
I can buy perhaps as much as a couple of more years like we are doing, before
bringing out the big guns of HT and/or Chemo.
Of course with this strategy, there is an element of gamble, but so are
many other medical decisions. This is
one that I am on board with, and not remotely worried I am making a big mistake
in hindsight. This is one call that’s
definitely between my doctor and I, so I only ask anyone reading this to
respect my decision. While it may not
work for you, it works for me, and with my mind set and not being a “worrier”, I
am ok following his advice.
When he examined my legs, he
said my muscles were really contracted and tight, and said that was a vicious
circle in work. The pain is making the
muscles tightened, and then the
tightened muscles are making the pain
worse. That why he’s hoping that perhaps
via the right kind of massage and perhaps the acupuncture, it could help loosen
me up, and perhaps relieve some of the pain even short term.
That’s all that pops into my
head, if I think of anything else important, will amend it as a post in this
thread. When I left, I felt much better
about myself and my situation. He and
his nurse are a rare gem. I know he
really cares about me as a person, not just another patient or a number. From his conversations, he does a lot of
thinking about my individual case. And
this is the most important part to me, he still absolutely believes in me, and
what I am going through, and have gone through, and just wants to make things
better for me, and to keep me as comfortable as possible.
Based on what the new doctor
had said to me, I told him that I was worried that he was getting the wrong
message, and didn’t want him or anyone else to think I was some kind of sleazy
drug seeker. He assured me, that as my
oncologist and knowing what I have endured for 5 years now, and the fact that I
was in oncology rehab for 2 plus years on my own accord, he has never thought
that, and never would. He saw me as
being a great self-advocate, and a very knowledgeable and responsible patient.
I see him in November, back
to 3 month visits, but if told me, that if anything comes up or changes, either
e-mail his nurse, or call him directly, anytime day or night.
David in SC
(To anyone reading this, I don’t
expect all to agree with some of the changes, or any of the changes, just
sharing what was discussed. My case is
very unique and problematic, and with some of the issues, there are simply not
many, if any, cut and dried solutions.
So please, I don’t need to be reminded of how I felt in the past or what
I might have said prior. This whole PC
journey is not static, and of course is subject to change depending on
circumstances and how I am feeling. This
update reflects how I am feeling as of this date. Certainly subject to change if certain things
don’t work, or if they need to be revised, or when my cancer progresses