J.Diva: Moving Forward-- Beginning Marriage and Proton Therapy

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.

Here are some general FAQs from this site: http://www.proton-therapy.org/questions.htm

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.”

Hebrews 12:1

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.