I have never attempted to write about chemotherapy because there really aren't words to adequately describe it. The best adjective I can come up with is ghastly. Knowing I'll be there for hours, I always bring several books, projects, Thank you notes to write, etc.,but I don't usually get to half of them. "Toxic" by Brittany Spears, is a horrible song, but the lyrics and the music are rather apropos in the context of chemotherapy. I found a video with just lyrics as the real video isn't so appropriate.
I usually begin feeling alright; I can read, maybe write, and have a conversation with whomever has come to accompany me, but then I feel the toxins set in and I begin to feel very heavy. Because my old/new regime includes irotican, I start to get stomach cramps, and the anti-nausea prep medicine ceases to work. Because of association, even the mere antiseptic smell of the chemo ward makes me nauseated. My best defense is turning on my music and laying back and trying to sleep. A much better song, which still describes chemo sentiments is "Radioactive" by Imagine Dragons: I'm waking up to ash and dust I wipe my brow and I sweat my rust I'm breathing in the chemicals I'm waking up, I feel it in my bones Enough to make my system blow Welcome to the new age, to the new age Welcome to the new age, to the new age Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
During yesterday's treatment, a pharmacist came to talk with me about the side effects of the drugs of my new/old chemo regime. One thing he mentioned was that I couldn't share drinks with my little girls for the next few days, as it might expose them to the chemicals. This makes me feel radioactive indeed! Yesterday was a particularly rough beginning to my new round of the fight. I always have to get my blood drawn an hour and a half before each treatment. To borrow my friend Kim's phrase, "I've drawn enough blood to feed Edward Cullen for a year." It takes an hour and a half because the lab needs time to process and evaluate. This time, for the first time ever after 15 rounds, my platelet count was low enough to where they had to cancel one of my fighting drugs, Avastin, and give me a blood transfusion, which cost me an extra 4 hours in the chemo lab; and to think I was dreading the extra time as it was! I'm not sure how I got into this mess. I can't stand the sight of blood and I hate needles, but I have to come in contact with both constantly, and have failed to develop a thicker skin. The blood transfusion didn't hurt, but I couldn't look up because there was a big bag of blood attached to my chemo cart. My day at the Cancer Center ended up being a 10 hour ordeal. It's funny that "fighting cancer" at its lowest point looks like this:
It's also a paradox that at least while I'm there, I feel like I'm killing myself to stay alive. The cancer ward at the UCSD Moores Cancer Center is like chemo in the big city. There are so many cubicles I get lost on the way back from the bathroom. I've never really met a fellow patient, because nobody really wants to chat it up as they suffer through an experience like this. Some patients look normal, but most look withered and sickly. Our contemporary epidemic of cancer seems like leprosy was in ancient times, save the contagion factor. I can't help but think of the lyrics to "I Heard Him Come: I wondered who would come into this place. Where dead men walk, and where the dying talk, Of life before the curse upon them came. How I wish the Savior would come through the crowded chemo unit maze and heal me! Someday it will happen. Meanwhile, as ghastly as chemotherapy is, there are a couple of silver linings:
Weight loss is guaranteed (though I wouldn't recommend this program to anyone!)
I get to blame my typical idiosyncrasies (losing pieces of my daughters' ballet recital costumes, getting lost in my own home town, etc.) on "Chemo Brain," which some believe is a legitimate thing, but in my case, it's just a great cop-out!
I woke up the next morning feeling fine. I just need to X out the chemo days on my calendar and plan on having good days around them.
Elton John wrote a clever little ditty back in the 80’s called “Sad Songs.” Here’s a picture of me from about the year it came out. I've placed a picture of my Carleigh now at close to the same age. Although she favors her daddy, there are some pictures which make it clear she is my daughter.
Turn 'em on, turn 'em on
Turn on those sad songs
When all hope is gone
Why don't you tune in and turn them on
They reach into your room, oh oh oh
Just feel their gentle touch
When all hope is gone
Sad songs say so much
If someone else is suffering enough oh to write it down
When every single word makes sense
Then it's easier to have those songs around
The video has some rad dance moves and shows a girl tuning into her Walkman. I have my phone and my earbuds, and it’s some of these great sad songs that have kept me going through this fight, and especially this past week and a half. Most sad songs are about unrequited love, feeling jilted or good lovin' gone bad, but their message resonates just the same when “all hope is gone.”
On July 11th, I did a round of “maintenance” chemo; which was much easier than the chemo of the past. My infusion lasted an hour instead of 4 or 5 and I didn’t feel that sick. My chemo was less painful than the CT scan that followed, because they couldn’t find a good vein and had to poke me a bunch of times. While I still hated the amount of time I would have to spend to get down to UCSD and back every other Monday and Wednesday, I was grateful that at least the infusion was short.
On the morning of Wednesday, July 13th, I was preparing to go down to UCSD for my pump disconnect when I got a call from the admin assistant at my oncologist’s office, saying that my oncologist wanted to fit me into his schedule today after my pump disconnect. As soon as I heard those words my heart sank. My oncologist usually only scheduled me every 6 weeks if even that, so the fact that I just had a CT scan and he was calling me in could only mean bad news.
I promptly called Carl, who was on his way to work and to drop off our girls at a summer school camp. He called in sick, and decided to take me instead of my parents, who were going to drop me off on their way to the airport to visit my sister, Natalie in Utah.
My parents thought about canceling their trip but I convinced them not to; I'm not their only child after all, but they did stop by the Moores Cancer Center to give me a hug.
I waited around to get my chemo pump disconnected, and then had to wait nearly 2 hours past our scheduled time as my doctor was running on an overbooked schedule. When he finally walked in the room, I said, “We are bracing ourselves for bad news.”
He answered, “Yes, I do have bad news for you.”
He went on to explain that cancer was found on Monday's the CT scan. I was declared NED (No Evidence of Disease) immediately following my 2nd liver surgery about 8 weeks prior. A 1.5 cm tumor had sneaked in to the left side of the liver, just where my surgeon had told me it might reappear if it were to reappear. As the cancer was widespread throughout both liver lobes, there was likely to be some microscopic cancer cells in the remaining left lobe that were not detectable before and after the surgeries. During the surgeries the blood supply was re-routed from the right lobe to the left lobe, preparatory to the right lobe coming out. Then they removed the right lobe, the left left lobe was receiving all the blood supply, and any remaining cancer would get heavily fed and grow quickly.
My heart sank. Just yesterday, Carl had said, “Your scan will be clear and we’ll just enjoy 3 months of bliss!”
Wouldn’t that be nice if that came true? Even just 3 months of ignorant bliss.
“We did try to prepare you for this,” my doctor said.
“Yes, I know,” I said.
The fact that I knew the low odds, that the cancer would return in 80 percent of cases did not change the fact that I put all my hope into the possibility that I would fall into the rare 15 to 20 percent that walk cancer free post 2-stage liver resection. Recently, I had contact with people who had done just that.
My oncologist was a lot more humane than my surgeon, but on this day, it may have been preferable if he were cold and clinical instead of warm and personable.
“We call patients into the office to give them such news as it is just preferable to calling on the phone,” he explained.
“Well, that’s better than what Kaiser did to me in calling me at Target” I smiled through my tears. “I almost fell into the shopping cart when I was initially diagnosed.” I felt like I was being diagnosed all over again. He read my mind as he said:
“I know that you are thinking that this is worse than your initial diagnosis. You have already been to hell and back, and you know what’s coming.”
The waterworks continued. At this point, the nurse, who was covering for my usual nurse and who had never met me, gave me a tearful hug.
This was a little much! It was all just too dramatic and serious.
I then learned that the current imaging was inclusive and that he had ordered 3 more scans, including a thorough full-body PET scan, scheduled for July 29th. My chemo would need to be increased from one toxin to 4, which meant it would be 3-4 hours more per each infusion.
I was supposed to pick up a prescription but didn’t because we couldn’t get out of that cancer center fast enough. The following Linkin Park song, “In the End” which I remember from the summer of 2002, was running through my mind:
I tried so hard,
and got so far,
but in the end, it doesn’t even matter!
I had to fall
To lose it all
But in the end
It doesn't even matter
The message of the song is rather whiny and sophomoric, and I don't permanently adopt Linkin's philosophy, but the blend of melancholy and punk perfectly captured how I was feeling when I got that news.
I had put my body through so much trauma these past several months, and have some potentially irreprable side effects for a shot at a cure that may have not even worked. I made the error of asking my oncologist if my invasive surgeries were worthwhile. His only answer was, “That remains to be seen.” From what the surgeon said to us before though, at the very least the surgery has prolonged my life, and just one tumor has to be better than the 27 which were there pre-surgeries. If the next scans reveal more, they will still be less than 27.
When I was able to gather my emotions just a little, Steve Perry’s (former lead singer of Journey) “Foolish Heart” came to mind. This song came out close to the time I remember Elton John’s “Sad Songs.” Lately, as my entire life has flashed before, I have longed to listen to songs from my childhood which we would listen to on a record player.
Foolish heart, hear me calling
Stop before you start falling
Foolish heart, heed my warning
You've been wrong before
Don't be wrong anymore
As I thought through the reasons I felt so shocked and disappointed upon learning about the outcome that was the most predictable all along, the following data points came to mind:
I put all hope into a cure because the alternative (having to keep fighting with chemotherapy and surgery) was unbearable.
I had thought of my cancer as a definitive trial in my life that I could learn from after hard fighting for a year and move on back to a state of normalcy, having been made better for it.
My past life experience was that life ebbed and flowed with a series of ups and downs and this past year with all its hardship felt like an unrelenting beating. Couldn’t I at least come up for air for a few minutes?
My family and caretakers need a break and deserve a healthy wife/mom/daughter. So much seems to be falling through the cracks and everyone is already so worn out~
I have learned so much from my family, friends, community, and even strangers as the recipient of wonderful acts of service. Wasn’t it my turn to get out of the limelight and give back?
I’ve always believed in miracles, and thought that my miracle of life was due to come now.
Maybe my "foolish heart" wasn't so foolish, but I've had to learn a difficult lesson on faith.
As I’ve processed all these reasons for my bitter disappointment at what seemed like a re-diagnosis, I’ve concluded that it’s healthiest to become a realist instead of an idealist. This doesn’t mean that I’m a fatalist, nor that I’ve ruled out the possibility of a miracle for healing in the future, but I do need to face the facts, which are simply that because a malignant cell decided to mutate in my body to multiple organs unbeknownst to me, I have a Stage IV cancer which has been defined as “incurable.” It can’t be reasoned with. It doesn’t care that I have young children to raise, that I am tired of fighting, or that I have some serious goals which reach far beyond simply staying alive. It can’t be quelled with positive energy, or even faith. Both those things are important to be able to stay in the fight, but they won’t take it away.
Maybe I can get it through researching the best medical and holistic options and finding a healthy merger. I've had to learn that even in one entity like UCSD, there are gaps even between departments and I have to be my own advocate most the time and figure out what is best with trial and error.
In terms of my faith, I can attempt to align my will with God’s, but I don’t know what that is yet, so while I can hope for the best, I also need to prepare for the worst. When I was initially diagnosed, I worried that I wouldn’t have enough faith to produce the miracle that I needed to beat this cancer. I’ve come to discover that faith isn’t the ability to move mountains, but the ability to withstand the disappointment, even when deserved and seemingly much-needed prayers go unanswered.
In the LDS book of Mormon, the ancient prophet Moroni writes: “Dispute not because ye see not, for ye receive no witness until after the trial of your faith.” (Ether 12:6).
At this point in time, the length of my cancer trial is indefinite, but I know that I am supposed to endure with faith. I haven’t worked out yet how I will develop this realistic brand of faith, but the following quote, which I got from a Sunday school lesson a couple of weeks ago by Spencer W. Kimball is my best attempt at perspective:
Now, we find many people critical when a righteous person is killed, a young father or mother is taken from a family, or when violent deaths occur. Some become bitter when oft-repeated prayers seem unanswered..... But if all the sick were healed, if all the righteous were protected and the wicked destroyed, the whole program of the Father would be annulled and the basic principle of the Gospel, free agency, would be ended.
…….Should all prayers be immediately answered according to our selfish desires and our limited understanding, then there would be little or no suffering, sorrow, disappointment, or even death; and if these were not, there would also be an absence of joy, success, resurrection, eternal life, and godhood.
I wrote most of this post on July 24th, the day that LDS people celebrate our pioneer heritage, My pioneer ancestors endured countless trials , which included estrangement from family, long voyages, and long treks on foot. Here is a photo of my girls and I at our local Pioneer Day activity:
I will conclude this post with a sad but redemptive song, “Come, come ye Saints.”
I was supposed to start chemo right after
returning from my BYU-Idaho conference on June 27th. I had wanted to spend a couple of days in
Salt Lake to see my sister and some friends, but cut my trip short as the anxiety
to start chemo began to set in. I even
had some psycho-somatic symptoms, such as throwing up in the days the preceded
the trip, or maybe that was just dehydration from the heat. However, chemo ended up being postponed on
account of an agonizing toothache which needed a root canal. I was able to get the needed work done, and
have 2 extra weeks to heal, which I think proved to be a blessing.
Healing cost half the summer, but I started to
feel better, at least well enough to get out and about by the weekend of the 4th of July.
Our First date out post-surgery to "Soda and Swine."
Me and My Girls on the 4th
Ever
the FOMO (Fear of Missing Out) queen, I hated missing half of the summer,
but I did learn to enjoy the simple things happening in the walls of my home,
such as watching American Girl movies with my girls, reading stories to them,
and laughing at their jokes.
The 7 weeks post surgery at home were tough. In the thick of the pain, at times I thought I would never feel better. I sometimes thought of the song "Diamond Road" by Sheryl Crow, which is about not missing the sparkling moments even in the face of pain and hardship. When the night falls, and you're stumbling, it's gonna take a little time, to make it to the other side
So don't miss the diamonds, along the way.
Every road has lead us here today
Life is what happens while you’re making plans.
All that you need is right here in your hand.
Even though I would usually much rather be out and about I learned that all that I needed was at home. I learned that it's persistent love on even on
the most mundane days that makes a happy home.
My sister-in-law, Katie helped me to create this video for Carl's and my
12th anniversary which features Blue October's song, "Home." The
pictures shown are from when the girls were smaller and
most from this past year, of us creating happy memories simply within the walls
of our home, even during my sick days. As the song says, "It's the little things that make a home."
Carl and I also love the lyrics, I feel like I'm gonna win And I'm as proud as I've ever been Cause I'm surrounded with some good friends Yeah, good friends, good friends Even though we are facing some dark times, when we are surrounded by good people, it pushes the fear and the darkness away. We can also take refuge from the darkness by creating a happy home. Happiness is truly a choice.
The night that paralyzing stomach pains
kept me up until 3am, my mom called the ER.
Surprisingly, the on call nurse set me up with an appointment with my busy surgeon
for the very next morning. I thought I
would see someone from his team, and was surprised that the appointment was
with him. I was accustomed to the fact
that he had a gruff, blunt, demeanor, but occasionally he liked to tell
jokes. This time though, he seemed
largely inconvenienced that I was taking up his precious time.
"I got paged at
3am," he said. "There is
absolutely nothing I can do for you, you know."
"Nothing?" I said,
as I couldn't stop the tears. I was
exhausted and run down and could not hold my emotions in check.
He continued: "You know everything we do for you can
either help you or harm you."
I laid on the patient table
and just silently sobbed. Well, this
is a productive appointment, I thought.
And then it got even better.
A couple of weeks back, just
a week out of surgery, I had asked him what he thought about me flying to Idaho
in a month's time for my BYU-Idaho conference, which I was invited to speak at
on the topic of leadership and adversity.
He said that it would probably be alright, but that we would see how I
was doing. Without any questions from me, he said as he was leaving,
"Oh, and by the way, I
don't recommend you go on that trip.
That speech you want to give just isn't that important."
Well, who was he to tell me
what was and what was not important in my life? At that point, I resolved that I would write my talk and I would make
that trip. Mom wasn't too keen on the idea either as she was worried about me straining myself at a critical period of my recovery, but I was
determined. Carl also resolved that he
and the girls wanted to hear my talk, so they would drive and because I
couldn't be in a car for 16 hours, I would take the flight to Idaho Falls which
BYU-Idaho offered.
When it came time to go, I
was unsure I would be able to go on the plane until the day of. I had set up a contingency plan, with a
pre-recorded talk through google hangout, but the technical aspect wasn't
great, so I knew I just wanted to be there.
I barely felt well enough to pack my suitcase and pack the girls'
suitcases, but thankfully I had some help. Because my flight left at 6am on a
Tuesday, I was going to spend the night at my in-laws Monday so and they would take me to the airport as Carl
would need to begin the road trip with the girls on Monday. We were having a major heatwave in San
Diego at the time and my in-laws, who don't have air conditioning generously
offered to put me up at the Holiday Inn so that the heat would not make me
sicker.
Both the flight from San
Diego to Salt Lake and from Salt Lake to Idaho Falls passed without major
incident and I made it to Rexburg in one piece. Amazingly, I was a lot more
nervous about getting sick than actually delivering my talk to an audience of
200 people. I was presenting with my
friend, Kim, who had also served with me on BYU-I's management team and was
also suffering with some help problems.
In addition to many cherished colleagues and friends whom I had worked
with for the past 6 years, my parents, Carl and the girls, Aunt Pam and Uncle
Rich, Grandma, and 3 of my Blackham cousins who were students at BYU-I, Josh,
Jessi, and Corey were in the audience.
It felt great to be able to
share my story and to connect with many in the audience on a personal
level.Here is a video of the
presentation.My part begins at about 25
minutes, but I would also highly recommend listening to my friend, Kim's presentation:
In addition to being able to
give that address, it was healing to be surrounded by such positive energy at
the faculty conference.Here are a few
pictures with some of my great friends, most of whom I've worked with for at least 5 years. Many have been following me and have been so amazingly supportive with texts, calls, cards, gifts, prayers, and fasting.
As I reflected on how healing the trip was, it came to mind that although I need to heed my doctors in some things, that I know what's best for me more than anyone else, and that it is possible that I can heal myself.
It’s been said that
healing is pain and this was definitely the case with my surgery recovery. I was in too much pain to feel like writing,
which is why there has been a nearly 2 month absence of an entry. Many days, I would listen to this song, “Broken,”
originally recorded by Lifehouse and beautifully sung by Trisha Yearwood in the
New Orleans “Passion” as I tried to fall asleep. In "The Passion," the song is set in the context of mourning Christ's crucifixion but leaning on Him for true healing in times of despair:
The following lyrics from Broken applied directly to how
I was feeling post-surgery:
I'm falling apart, I'm barely breathing
With a broken heart that's still beating
In the pain there is healing
In your name I find meaning
So I'm holdin' on, I'm holdin' on, I'm holdin' on
I'm barely holdin' on to you
I'm hangin' on another day Just to
see what you will throw my way
It seemed that if
wasn’t one thing it was another.There
were a couple of nights when I had intestinal pain that was so bad, it was
paralyzing.I freaked out and called my
poor mom to come over and she spent the night with me, twice. Shortly after I
had an outbreak of shingles on my face, and my PA didn’t prescribe me anything
and it was heading toward my eye, so I had to ask a family friend for a
prescription which eventually cleared it up. Then there was the ever-pressing pain at my
incision site. I felt like I had a big hole in my gut, because I did, as the
entire right side of my liver had to regenerate.
Also, Getting to
sleep at night has been an issue since diagnsosis, but post-surgery, I would
break out in night sweats several times a night.At least I didn’t have anywhere to be the following
day, but it would have helped my mood to get some sleep.The following lyrics discuss a broken clock
being a comfort.
The broken clock is a comfort, it helps me
sleep tonight
Maybe it can stop tomorrow from stealing all my time
I am here still waiting though I still have my doubts
I am damaged at best, like you've already figured out
This reminds me of
the following quote by President Henry B. Eyring.
"I cannot assure you that your trials
will seem to you to be only for a moment. One of the characteristics of trials
in life is that they seem to make clocks slow down and then appear almost to
stop."
Yes, the clock seemed to almost stop for me
during those 7 weeks post-surgery. I am
not what you call a home-body, and I love to be out and about. Recovery took half the summer, and I missed opportunities
to enjoy the beach, the pool, and do fun things with my girls. At that
point in time, I had to turn off my Facebook feed as it was too hard to see
friends out on vacation enjoying their summer as I languished at home. Some days, the only time I got out of the
house was when some sweet ladies from Church or my mother-in-law came to take
me on a short walk. I don't have any pictures from those walks, but I do have a couple of being wheeled around at the airport by my sweet mother-in-law, Susan, and dear friend, Sarah:
Note that I had to wake up at 3:30am that morning and it appears I didn't fully rinse out my hair!
Just a couple weeks post-surgery, even though I still felt miserable, I was ready
to get out of the house. My sweet friend
Robin offered to see a movie we had both been looking forward to, “Me Before
You,” about a girl who falls in love with a quadriplegic she is care-taking. So I loaded up on painkillers and Robin picked me up. The movie features, the song “Unsteady” by
X-Ambassador, which seemed to be the theme of my recovery. Robin had to help me walk a crossed the
parking lot and through the movie theater.
This song reminds me
of all the people I physically and emotionally leaned on during my recovery.
Several friends came to visit to bring me cheer. Both friends from church and
Aunt Lisa and cousin Kiera came to help clean my house. I love that they wore their Team Carmen shirts!
I still have some pain from the incision site, but I'm feeling about 70 percent better. I haven't tackled working out yet, but may next week. Feeling well and health are not things I would ever take for granted again. Thankfully, the clock no longer is at a standstill.
