Hello all,
Prior to surgery on July 10, most doctors who looked at my
MRI scans were relatively confident that it was a recurrence of
medulloblastoma. Therefore, Erin and I sought information from experts at CU
Hospital in both the radiation and neuro-oncology fields to discuss suggestions
for treatment of a medulloblastoma recurrence. We did this with the knowledge
that without pathology results none of the information we gathered could be
certain. We have received initial pathology from CU and interestingly it suggests a much
different type of malignant tumor. This new development means any information
we previously gathered is null and void. I’m going to hold off from writing about specifics of my
tumor until I have more solid information.
Last week Erin and I returned to Denver to meet with CU
radiation and neuro oncologists who gave us their potential treatment plan,
based on initial pathology. We are currently seeking more opinions from doctors
across the country, which is easier said than done. We (mostly Erin) are
spending a good deal of time getting medical records, MRIs, and pathology
slides from the past and the present sent to a number of different medical
institutions. My uncle has been helpful as well, getting the
process expedited as we are on a bit of time crunch since a treatment regimen
should begin in the next few weeks. The doctors we saw last week all said I
have recovered from surgery nicely and if you saw me today you’d probably
agree. Unless you knew my story, it would be hard to believe that I had brain
surgery just over two weeks ago! Physically I’m feeling pretty great; mentally
I am doing my best to stay positive although given these tough circumstances
it’s not always easy.
Erin went back to work this past weekend on a 4-day trip,
which was a very good change of pace for him and also for me. I was happy to
have the boys to myself and feel a sense of normalcy. We missed dad, but I would say the highlights
for the boys involved kind gestures from neighbors who taught them how to fish for
crawdads in a nearby creek with their new kid fishing poles and getting treated
to TCBY. The highlights for me were our ritual of pizza and movie on Friday night and our morning routine of
reading three books by the fireplace right when we wake up. Those boys can
be quite a handful, but taking care of Alex and Dean while I’ve still got the
energy is a great distraction from the reality of what’s going on around me.
Erin and I will likely do a bit of traveling this week or
next to meet with other doctors in different states. We also have a phone
consultation with a doctor in California. We are certainly doing our research
to find the best possible course of action for my treatment plan. I hope to
have more to report soon.
Have a lovely week and take care,
Sareana
P.S. Receiving a cancer diagnosis is a very complicated matter and navigating our way through this process for the second time, my family and I have learned a lot more about the "c" word than we should have to know. However, I wanted to take this opportunity to share some basic knowledge for those of you interested.
So, why is it necessary to receive some form of radiation, chemotherapy, and/or other
treatment post-surgery for a malignant tumor? I have had two successful total
resections, which means the surgeons were able to remove the entire tumor in
both 2008 and 2015, which is a very positive thing. However, surgery alone
cannot ensure that all cancerous cells have been removed; they continue to
exist in the area of the tumor (the “tumor bed”), even if only on a molecular
level. Cancer cells are aggressive
and multiply quickly, therefore some combination of radiation/chemo/other
therapies are prescribed to, ideally, kill all the bad cancer cells, or at
least slow down their propagation. So, without treatment there is a 100% chance
that cancer will recur and ultimately result in death.
An unfortunate side effect from these treatments is that
healthy cells are damaged, which is why cancer patients become ill from their
therapies (nausea, fatigue, hair loss, etc). Another serious risk of radiation
is that it eventually can result in “radiation-induced” tumors some time after
treatment; i.e. a new type of cancer can form either locally or present itself
in another part of one’s body that was in the radiation field. So, one might
deduce that cancer treatment is a double-edged sword: you’re damned if you do
and damned if you don’t. Some good
news is that cancer treatments are constantly evolving, and even in the last
six years, some protocols have become both more effective and less toxic to the
patient.
**I received this card from a friend that I think describes me pretty well...
one tough cookie!**
