From: Steven Durham <sdurham@bevillst.cc.al.us>
To: Kent Field <vianet@i-2000.com>
Subject: recurrence, relief and hope
Date: Thursday, January 15, 1998 9:39 AM

Dear Kent and readers of Kent's Web page:

My name is Steven and here my LMS story continues from postings numbers:
34,35,38,46,70

One and a half weeks after arriving in Perth, Australia, November 20th, I
woke up after a night of nightmares to enlarged lymph nodes in my groin on
the same side where my primary tumor had occurred. A CT scan revealed lymph
nodes to be affected in my chest and underarms as well as the appearance of
at least two 1 cm nodes in my lungs. A needle biopsy of the lymph nodes in
my groin confirmed their enlargement was due to cancer. Interestingly,
there was no sign of cancer at my primary site, of particular significance
because the radiotherapy I chose to forego after the surgical resection of
my tumor would unlikely have made any difference to my present recurrence.
(Hence with hindsight: no regrets.) I have to wonder what happened since my
"all clear" in the exam I had towards the end of September, three months
post-surgery? Was the effort involved in relocating to the other side of
the world, the stress involved in relearning to drive on the left side of
the road and adapt to the similar but definitely different Australian
culture again (I'm a dual citizen US/OZ having lived four years here
before), and the stress involved in retraining for my photography position,
working around photo processing chemicals, jet lag and that bothersome
airline cabin spraying of pesticides they do upon arrival in Australia all
conspired together to cause LMS to pop out again in my body? Was I that
fragile, my health equilibrium so precariously balanced, that these
seemingly normal activities could drive my status from an apparent remission
to Stage IV B, systemic spread, seemingly overnight? ...or would it have
surfaced again without these stressors? And what of the nightmares? (Not
normal for me.) How do they fit in, cause, effect or coincidence?

What a shock it was to be back in this struggle... just when I thought I
could pick up where we'd left off and get on with our lives again. Not that
I was planning to ignore the events of the past seven months, for you see,
immediately upon arrival in Perth, I'd sought out avenues to continue my
work on myself physically, mentally and spiritually - my own brand of
adjuvant therapy. It was good that I had started this process right away,
because when the tests confirmed our fears, a recurrence of LMS, we already
had the rough framework of care and support services available to assist us
through that dizzying period of surreal sensations and runaway emotions.
Perhaps the number one savior of our mental well being has been the local
chapter of the Cancer Support Association of Western Australia. Through the
CSA I have met numerous individuals of all ages with all stages and types of
cancer. Many that were given the all too common death sentences by past
doctors, like Cathy's dealings with melanoma for instance, after secondary
tumors developed, her doctors gave her "two months to two years to live" and
having done all they could, sent her home to spend her final days with her
husband and two young children. Seven years later she's still living life in
a big way and now with no sign of cancer... and helping me, and others, to
LIVE with cancer! From Cathy and other CSA members I have learned
techniques for coping with my disease and news of other avenues to explore,
both conventional and unconventional. Through the CSA I met one of the two
other people in Perth (approximate population: 1 million) who's lives have
been directly affected by LMS, a lovely and supportive woman named Jan. She
gave me the name of her wonderful doctor who is now my doctor as well and a
valiant and supportive team player in this role.

So what am I doing?

Well, within the bounds of Traditional Western Medicine the next option
appears to be chemotherapy. I'm scheduled to have one or two lymph nodes
removed from my groin in the next couple of weeks for Cell Culture Drug
Resistance Testing through Dr. Weisenthal's Lab in Huntington Beach,
California. This testing is somewhat controversial in the medical
community, but how I understand it this test is designed to show
definitively which chemo agents, or combinations, will NOT WORK on my cancer
and what agents and combinations MIGHT work. Doxorubicin (Adriamycin) and
Ifosfamide is what my oncologist is recommending here, and what seems to be
the standard first try regime for LMS. Both of these chemicals are powerful
poisons which attack fast growing cells (hopefully the cancer) but can have
all sorts of undesirable side effects. "Clinical experience has shown that
anthracycline drugs such as doxorubicin, used in anticancer therapy, produce
cumulative, dose- dependent, irreversible cardiomyopathy. This can result
in congestive heart failure and death" ...and the Ifosfamide can wreck
similar havoc in the kidneys. I know that that doesn't necessarily mean
it'll have those effects on me but I'm keen to have their effectiveness
tested out-of-body to be sure that they'll at least have the desired effect
on the cancer before I subject my otherwise healthy innards to all this. You
see, since day one with diagnosed LMS, the medical community and literature
have warned and reminded me about the poor track record chemo has against
LMS. The more optimistic studies I've read show an efficacy of around
20-30%. So I'm looking for the CCDRT to give me the ability to begin to
believe that chemo can work effectively in my case because the test results
will determine a regime custom designed for me. I believe there is no sense
taking on a treatment if I don't believe it will work especially a difficult
and lengthy therapy like chemo. It's interesting to me that studies of the
Placebo Effect have shown a comparable range of effectiveness as that for
chemo on LMS! Transporting my tissue samples all the way to the California
lab in a viable state will be a bit tricky... many logistic hurdles there to
overcome! It takes three days for transport, 7-10 for test results so, I
expect to start on my custom tailored chemo program within three weeks of
the relatively simple lymph node surgery.

Now for the Unconventional Therapies:

Buddhist meditations, Qi (Chi) Gong breathing meditations, guided
visualization and relaxation meditations, hypnotherapy, subliminal
suggestion, Reiki (hands on) healing, Chinese herbs, 60-80 minute long
forest or beach walks, bee venom therapy, Buddhist studies, support group
sessions, juicing, hyperthermia through hot baths and saunas, a fruit and
veggie rich diet and, maybe, I might even try skydiving as an immune system
booster! Yeah, I believe in the Shot Gun approach to healing and believe in
employing as many pellets as I can in my load, because it increases the
chance that a pellet will hit the mark!

Kent, I asked you pretty early on in my struggle with LMS, "which one of
your many alternative/unconventional therapies listed on your Web page
seemed to work the best for you?" You never gave me a reply... and now with
over seven months of experimenting with changes in my life and trying these
various therapies I understand why you may have decided not to answer what I
had naively thought then was a simple question.

It's hard to weigh up exactly which method gives me the most benefit... and
how would one measure a 'benefit'? We're deep in the realm of subjective
observation here, but I have to think that if someone with a 'terminal
disease' can do something that brings pleasure, reduces anxiety, gives hope,
reduces pain and makes them feel good, well... I reckon that would qualify
as a benefit. So with that as my guideline for what constitutes a
beneficial therapy, I'd have to say that Reiki, support group meetings, my
online communications with the LMS Support Group, the walks and the various
forms of meditations I've used have been the most beneficial. In fact, each
of these therapies, at one time or another, has given me profound joy... to
the point that my cancer has almost ceased to be a concern. So, even if
this leiomyosarcoma thing turns out to be the vehicle of my death, and I
have no doubt that it has the potential to do so (but it could be a
different vehicle, like a '96 Buick!), I have been able to enjoy my days,
LIVE my life and LIVE knowing that this is good... and it is the right thing
to do.

Another "right thing to do" is to pass on this hope to others that are now
experiencing that Emotional Roller Coaster Ride having just found out that
they, too, have LMS or another form of life threatening cancer. Everyone
should know as soon as possible the many ways to find relief from fear, the
ways to cope and the ways to achieve improved levels of health. The reality
is, if you are this far into Kent's page, then you are already learning to
cope... and do HAVE that hope! My heart goes out to you.

Most sincerely,

Steven A. Durham

PS - Kent, I hope you are well and improving from your recent setbacks.