I’m sure you’ve
seen photos ad nauseam at this point
(if you haven’t, check out our Wedding Website!), but MY SWEETIE PIE AND I GOT
MARRIED! What a pleasure it was to
have a small temple sealing, ring ceremony, and picnic with close family
and friends. Thank you to everyone
who made it special for us. And a
HUGE thumbs up to all of my surgeons, doctors, physical therapists, etc. who
made their deadline of having me “Feel Normal By
The Wedding.” WE did it! I felt great and I didn’t even fall over
in my high heels! How lovely!
(And didn't these make great favors!)
Since going on
an airplane with my head being a mess was still kinda iffy, we decided to
drive/ferry up to Martha’s Vineyard for our honeymoon and we had a blissful,
beautiful time.
The bummer was
coming home and having to be back in Philadelphia by myself for Monday through
Friday radiation. I have now
completed over one full week (out of 7) of my daily Proton Beam Therapy radiation
treatments.
How
does proton therapy work in relation to other mainstream radiation therapy and
chemotherapy?
- Proton
therapy is the most precise and advanced form of radiation treatment
today. It primarily radiates the tumor site, leaving surrounding healthy
tissue and organs intact. Conventional x-ray radiation often radiates
healthy tissue in its path and surrounding the tumor site. Chemotherapy
moves throughout the entire body, unlike radiation and surgery which are
considered "site specific" treatments.
What
are the side effects from proton therapy?
- Minimal
to no side effects, compared to conventional forms of radiation. Much more
easily tolerated than standard radiation therapy.
Sounds groovy
and all that, but in reality, it really isn’t quite as peachy as they make it
sound—especially if they are radiating your brain. As with anything irritating or damaging tissues in the
brain, there are naturally going to be side effects from either 1) specific
damage to affected parts of the brain, or 2) symptoms resulting from general
swelling of the brain.
Of course they
have to tell you the worst up front for liability reasons, but based on where
my radiation is being focused, my oncologist tells me that I may come out of
this bout of radiation blind, deaf, and mostly bald. (Jaw dropping to floor) The vision and hearing loss would come from swelling of the
particular areas being radiated, and those issues would resolve themselves when
treatment finishes and the swelling goes away. The hair loss will likely come at the site where the Proton
Beam enters my head. And, lucky
me, I get THREE entry spots! And
they’re not like the size of a laser pointer, this beam is like the circumference
of a baseball. So picture
three baseball-sized bald spots appearing on one side of my head, on the top of my
head, and at the back of my head. I
think because of my metal plate situation at the base of my skull, they had to
get creative with the beam angles…oy vey.
So you can see
why I am fighting with my nurse practitioners for permission to take
Hair-Skin-Nails Biotin pills to help prevent all that hair loss. Unfortunately, I am losing that
battle. No; I have officially lost that battle. Interestingly enough, the
only real prohibitions on my diet during radiation are to not consume mega
doses of antioxidants (including those Biotin pills!), in case they offset the damage intended to be caused by
the site-specific radiation.
Huh??
When they told
me this, all I could hear –even though it wasn’t the doctor’s actual words—was
“Don’t take antioxidants, we are trying
to damage your brain and don’t want you undoing our damage.”
I guess it makes
sense, but it still struck me as a really odd thing for a doctor to say. I guess I’ve been living life wrong all
along. Last year my primary care doctor
told me to not exercise so much (yeah, that was a strange conversation) and now
they’re telling me not to eat too many vitamins and antioxidants...
Hey, there was a lemon-sized tumor in
my brain; nothing surprises me anymore.
Oh, and my only
other diet prohibition is not to gain or lose any significant amount of weight
because it will throw off my calibrations and my mask won’t fit.
Did I tell you I
get to wear a mask?!
Think of that scary movie Jason meets The Man in the Iron Mask meets E.T. Roll those pleasant images all together and that’s my life
these days! Ha!
The mask is
super tight fitting—so tight I can't even open my eyes more than a tiny
squint—and it wraps all the way around the back of my head so the technicians can
clip it into the hospital bed so I am utterly immobilized. The cherry on top is the mouthguard
built into the mask that I get to chomp on the whole time. Fortunately, years of rugby taught me
that mouthguards are my friend :-)
So picture me
strapped to a bed with my face all smashed getting radiation baseballs hurled
into my skull, all while wearing a super foxy hospital gown, and that’s my
daily routine.
I get to have
this kind of fun for two exciting months, just waiting for my hair to fall
out. Whaaaa!
My words are
likely betraying the fact that with this going on, I’ve kind of just wanted to sleep and do
nothing. Proton Therapy does make
people tired and my Oncologist recommends that I do take a nap after treatment each
day, and to try to go to bed early if I feel like I need to. So now that the wedding is over and I
have no major events to agonize over, I’ve been taking this “radiation makes me tired, so I’m gonna sit
on my couch and watch Netflix” attitude probably a little too far…
So to try to
keep me in high spirits, I am looking forward to continuing to put me &
Jack’s new house all in order—so fun!—on the weekends when I get to be up in
Connecticut with him.
And a really
good decision I made a while back, motivated by my mom’s superior example, as
well as her subtle suggestion when I was feeling depressed, I have started
volunteering at the library! It is
good because I have a task to do in a place that is nice and quiet. So even if I feel like crap, I can have
some peace while I put my mind on other things. Applying to help out at the library is definitely one of the
better ideas I’ve had in a while (besides marrying my sweetheart-- that was the BEST decision I’ve made all year!).
And this
volunteer work is in line with a Priesthood Blessing I just received last week,
encouraging me to serve others and prophesying that I have “many years of
happiness ahead.”
This was such a needed reassurance for me, since I feel
confused sometimes about what comes next.
I sit in the waiting room at the hospital every day with a fabulous
hospital gown tied on haphazardly, surrounded by white-haired men in their 70’s
and the occasional sullen, smooth-headed child in a wheelchair. I just feel really out of place at a
cancer treatment facility as a 27-year-old who is already plotting the route
for her jog as soon as her day’s treatment (and nap) is complete.
But it is such a waste of the mind and body I have been
given to just sit around feeling sorry for myself—at least not all the time! So I have been looking for inspiration to get motivated to
look forward to happier times and not get bogged down in boredom or loneliness.
From the Apostle Paul, “let us run with patience the race that is set before us.”
This is a really old quote from a previous prophet of the
Church of Jesus Christ of Latter-day Saints*, President
Kimball, but I really like what he said and I know it is still relevant:
There is so much yet to be done! Let us, then, move forward;
let us continue the journey with lengthened stride. The Lord will lead us
along, and he will be in our midst and not forsake us.
President Spencer W.
Kimball, Let us not Weary in Well Doing, April
1980
In the world and in my life, there is
still so much to be done. My sweet,
handsome husband is always really good to help me see the forest from the
trees, to not get too caught up in the emotions of the day, but to look forward
to the future.
Additionally, my caring cousin Ali
recently reminded me of a talk that I had listened to post-op, before
I could see well enough to read printed text. I just want to add my favorite parts, even though it is a fairly long excerpt, because I think it gives a really nice analogy. A
modern day Apostle of Jesus Christ, Elder Bednar, talked about a friend who won
a benign battle with his wife and bought a new 4-wheel drive pickup truck, and
here’s what happened:
“Sadly,
my friend went too far along the snowy road. As he steered the truck off of the
road at the place he had determined to cut wood, he got stuck. All four of the
wheels on the new truck spun in the snow. He readily recognized that he did not
know what to do to extricate himself from this dangerous situation. He was
embarrassed and worried.
“My
friend decided, 'Well, I will not just sit here.' He climbed out of the vehicle
and started cutting wood. He completely filled the back of the truck with the
heavy load. And then my friend determined he would try driving out of the snow
one more time. As he put the pickup into gear and applied power, he started to
inch forward. Slowly the truck moved out of the snow and back onto the road. He
finally was free to go home, a happy and humbled man.
“…It was the load. It was the load of wood that provided the traction
necessary for him to get out of the snow, to get back on the road, and to move
forward. It was the load that enabled him to return to his family and his home…
“Sometimes we mistakenly may believe that
happiness is the absence of a load. But bearing a load is a necessary and
essential part of the plan of happiness. Because our individual load needs to
generate spiritual traction, we should be careful to not haul around in our
lives so many nice but unnecessary things that we are distracted and diverted
from the things that truly matter most…
“Recall
the Savior’s statement ‘For my yoke is
easy, and my burden is light’ (Matthew 11:30)
as we consider the next verse in the account of Alma and his people.
"'And I will also ease the burdens which are put upon your shoulders,
that even you cannot feel them upon your backs’ (Mosiah
24:14).
“Many of us may assume this
scripture is suggesting that a burden suddenly and permanently will be taken
away. The next verse, however, describes how the burden was eased.
“'And now it came to pass that the burdens which were laid upon Alma and
his brethren were made light; yea, the Lord did strengthen them that
they could bear up their burdens with ease, and they did submit cheerfully and
with patience to all the will of the Lord’(Mosiah
24:15; emphasis added).
“The challenges and difficulties
were not immediately removed from the people. But Alma and his followers were
strengthened, and their increased capacity made the burdens lighter. These good
people were empowered through the Atonement to act as agents (see D&C
58:26–29) and impact their circumstances. And “'in the strength of the Lord' (Words of
Mormon 1:14; Mosiah 9:17;
10:10;
Alma 20:4)…
…"The Lord desires to enliven us…to strengthen and heal us.”
April 2014, Bear Up Their Burdens With
Ease, Elder David A. Bednar
Finally, I want to
share one of my favorite scriptural stories that I have been pondering while
seeking inspiration to act amidst adversity. The young people involved in this story were known as the
Stripling Warriors. These little warriors
totaled about two thousand and sixty young and untrained boys. They lived in a society who, after
years of war and bloodshed, now centered around peace and liberty. But when this society was unjustly
attacked by enemies, these boys volunteered to fight to defend their families
because the older generations had made an oath to the Lord that they would not
bear arms ever again. Rather than
having their fathers, uncles, and grandfathers break their promises, these
Stripling Warriors decided to defend them. Even though they were under-qualified to be soldiers, they
bravely chose to defend their people, with strong faith that the Lord would
deliver them.
Their leader
recapped what happened after these boys were in battle—
Alma, Chapter 57
25 And
it came to pass that there were two hundred, out of my two thousand and sixty,
who had fainted because of the loss of blood; nevertheless, according to the
goodness of God, and to our great astonishment, and also the joy of our whole
army, there was not one soul of them who did perish; yea, and neither was there
one soul among them who had not
received many wounds.
26 And
now, their preservation was astonishing to our whole army, yea, that they
should be spared while there was a thousand of our brethren who were slain. And
we do justly ascribe it to the miraculous power of God, because of their
exceeding faith in that which they had been taught to believe—that there was a
just God, and whosoever did not doubt, that they should be preserved by his
marvelous power.
27 Now
this was the faith of these of whom I have spoken; they are young, and their
minds are firm, and they do put their trust in God continually.
What I like
about this story is that God didn’t put the whole army on a cloud and save them
all from the horror of war.
Instead, God demonstrated His power more subtly to these boys by having
them participate in a battle where many on their own side died, but each of the
Stripling Warriors, young and inexperienced though they were, survived.
But again, they
weren’t placed within some spiritual force field! (Although that may have been
cool…) They ALL had to fight and they ALL received wounds.
About 10% of
them received wounds bad enough to make them pass out from blood loss! They fought, they got hurt, but they
lived and their faith was strengthened.
Being protected from evil and from harm doesn’t mean we get to sit on
the sidelines, it usually means we have to fight and even face some collateral
damage, but we will ultimately triumph if our hearts are right.
And I will
finish again with a poem by John
Greenleaf Whittier, an American poet and abolitionist—
Press bravely onward! — not in vain
Your generous trust
in human kind;
The good which bloodshed could
not gain
Your peaceful zeal shall find.
*P.S. I really like this simple video
explaining my church:
