Sad Songs

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.”

Why should we mourn or think our lot is hard?

Tis not so; all is right.

Why should we think to earn a great reward?

If we now shun the fight. 

Gird up your loins.

Fresh courage take.

Our God will never us forsake.

And soon we’ll have this tale to tell.

All is well, all is well.