1. Learn slightly more than your doctors know about your condition!
Obviously, this is tongue-in-cheek, but
you get the idea. Once you are faced
with a life-threatening diagnosis, you
must become a student. You must
learn quickly, and you need to continually formulate questions to discuss
with experts in order to understand
risks vs. benefits of various treatments.
Being well informed actually helps you
determine when a recommendation
doesn’t fit within the standard of care
or most current treatment protocols
for your condition. You and your loved
ones must become your own advocates.
2. Get more than one expert opinion!
Get two or even three opinions from
those considered experts in managing
your condition. For David’s original diagnosis of neuroendocrine cancer, we
sought three expert opinions before
deciding upon surgery. For his transplant, we sought three opinions to be
certain this was the best treatment
and to be certain whom to use for the
procedure. Even if all the opinions are
different (as ours were in both cases),
you will learn valuable insights by consulting with those most knowledgeable about your condition, which will
enable you to make tough decisions.
3. Learn from those who have walked
in your shoes! Perhaps the best place
to learn what you really need to know
is from other patients with your diagnosis. We immediately joined a support group for neuroendocrine cancer
and continue to learn from brave individuals walking one step ahead of us.
4. Go with what you know! These five
words can be life giving when traveling a long road that presents many
twists. The minute the brain hears
cancer or lupus or any other type of
serious diagnosis, the temptation to
leap ahead into the “what ifs” is almost
overwhelming. Most of the time the
possibilities are not probabilities. You
need to reserve energy for handling the
continued on pg. 102
that time, I was able to use
my Sonicare brush on the
“sensitive” setting. The mucositis and ulcers resolved
after about two weeks but
I was thankful to have numerous treatments to help
manage the pain.
Karen: What modifications have you had to make
as a multi-organ transplant
David: Obviously, I wear
a protective mask on airplanes and in public places
where a lot of people are
gathered in small spaces.
I intentionally avoid being around anyone known
to be sick. I carry hand
sanitizer wherever I go and
wash my hands frequently. I have learned
to make healthier food choices and have
to avoid raw fish as in sushi. Due to bacteria and staph present in the soil I now have
to wear gloves for yard work. I am told I
cannot ride a horse, but I didn’t do that before the transplants, so that is OK. I can’t
do abdominal crunches, but who wants to
do those anyway?
Karen: David, thankfully you have
been given a new lease on life as a result
of your transplantation. What message
would you like to pass on to those reading
David: Number one, be an organ donor. It saves lives! I know not everyone
will have cancer, but everyone will have
struggles in life. I have tried to apply a saying my brother-in-law passed on to me: “I
will hope in God when I have no hope for
optimism.” When you come close to facing
death, every day takes on new meaning
and you understand what a gift life really
is. I am more grateful than I can express.
Walking this journey with David afforded me an opportunity to learn about
management of chronic diseases up close
and personal. I’d like to share a few insights that could be helpful should you or
a loved one find yourself coping with a serious illness.
surgery, they started me on a very common
anti-rejection medication called Prograf.
After about one month, they introduced
a second anti-rejection medication called
everolimus, also known as Afinitor. That
medication is also used as a chemo treatment for neuroendocrine cancer but it doubles as an anti-rejection medication.
Having known of other neuroendocrine patients who take everolimus, I was
aware that a common side effect initially
is the development of numerous mouth
ulcerations and mucositis. I experienced
that, and it was so severe that it impacted
my ability to eat at a crucial time when I
needed calories for continued recovery. I
found several things that helped alleviate
pain and helped the mouth sores heal. I
used a prescription mouth rinse formulated by a pharmacist called “magic mouthwash,” which is a mixture of lidocaine,
antihistamine, and Maalox.
I also applied PerioSciences antioxidant gel numerous times per day on my
ulcerated gum tissue for relief. A product I
learned about from other neuroendocrine
patients is a prescription called triam-cinolone cream, which also relieved discomfort. Maintaining good oral hygiene is
important due to immunosupression, and
even though my mouth was very sore at
David Sandlin poses on the day he left the hospital following his multiviseral organ transplant.