The cancer
battle began yesterday with radiation treatment in London. Mark will continue with 5 weeks of
treatments, 5 days per week. I was able
to drive him yesterday and today, and his mother and volunteers from our church
will continue to transport him when I can’t (I’m teaching part-time). While he may feel well enough to drive
himself, distraction is especially important for him.
Our trips
were uneventful, except for the excitement of our little women who were eager
to explore “Daddy’s hospital” (they even let Kayla push a button to move the
radiation machine today!). Mark was in
and out in 25 min (too bad the drive is triple that – each way!). He’s feeling fine so far, but we understand
that if he will get sick, it likely won’t happen until two weeks into treatments. We will continue to wait and see.
The doctors
have not been clear about the purpose of radiation (even after being explicitly
asked). Surgery is supposed to be the primary treatment plan. The radiologist explained that they do not
expect the tumour to shrink, but it might increase the effectiveness of
surgery. This doesn’t really make sense
to us, as the surgeon explained that the entire gluteous maximus will likely be
removed. I’m not sure how radiation can
improve those margins! We pray earnestly
that radiation would shrink the tumour so that surgery would be less invasive
(however, losing a butt muscle is apparently not too life-altering – maybe some
changes in hip extension only...).
Mark saw an optometrist this week. We wanted to
investigate whether or not he has something called “lisch nodules” – small bumps
on the iris that are a clinical feature of NF1.
He had brown specks in his mostly blue iris, which matched the google
images of lisch nodules. The doctor said
Mark has remarkable vision, but he does in fact have lisch nodules. They should not affect eyesight (and obviously are currently not), but we
will keep an eye on them (no pun intended).
The optometrist said he has only seen them in about 10 cases, and all
have been associated with NF. This is
very strong evidence of NF. (This is
what you do when the health system is sluggish – collect your own evidence!)
We finally
have an appointment to see a genetic counselor: Thursday, Sept.18. We want desperately to connect with an NF
doctor to discuss the implications of an underlying NF condition when dealing
with cancer. We want to make sure we are
aggressive enough with treatments, as we are dealing with a genetic disposition
for the overgrowth of cells.
We are
relieved to be in the treatment stage of this journey. We feel that strength that many Christians
have expressed. God is keeping me strong. The cynic in me often wondered if that was just a cute
Christian mantra that was repeated enough to convince oneself calm. Now I understand that strength. There’s no reason to feel this peaceful
amidst the chaos of this storm; it's that peace that transcends understanding. That’s
God’s doing. That’s prayer in
practice. We thank every one of you
saints for those murmurs lifted heavenward.
They are carrying us.
XOXO
