Memorial Day
weekend will always be… weird… for me. I
have a real love/hate relationship with it every year, and it has
nothing to do with the point of the holiday.
Memorial Day weekend of 2008 was
one of the most terrible times in my life, thus far.
My husband,
Eric, and I were coming out of a very difficult 8 months that included new baby #2,
severe postpartum depression, financial hardship, a very difficult move, and
all the confusion and angst that comes with all those things. So, when Eric told me that he thought he might
be having panic attacks, it wasn’t a huge shock.
He
internalizes…. A LOT.
We had just
come through a hugely stressful few months.
It made
sense to me.
It was
bothering him enough that he made an appointment with our family doctor, Dr.Warren Langworthy. Dr. Langworthy
listened as Eric described these “attacks” as his heart rate increasing
significantly, his vision tunneling, a feeling of panic and confusion. Our doctor asked him when he had last
experienced this. Eric told him it had woken him up the night before, and it had happened the day before while he was outside throwing a football with some co-workers
on their lunch break.
Dr.
Langworthy surprised Eric by saying he didn’t think it was psychological, but
physiological. He told Eric that people don’t usually have panic attacks while
throwing a football around in the park, nor can you fully go into a panic
attack in your sleep.
Dr.
Langworthy scheduled an MRI for Eric, first thing in the morning the following day on Friday, May 23,
2008. Eric left that appointment in
Murfreesboro and drove straight to work in Nashville, TN. He had forgotten to charge his phone the night
before (if you know him, that is definitely not surprising), so it was dead. When he got to work about an hour later and plugged in his phone, he already had a voicemail from the doctor telling him to get me,
drop our kids off at daycare and come in as soon as possible. I had already
dropped our 3-year-old at day care, and was on my way to drop our 8-month-old at
the home of our dear friend that usually kept him. I had forgotten they were on vacation
until I got there and no one answered the door.
So, I loaded him back up and took him with me to the doctor.
They took
the 3 of us back to an exam room to talk.
Eric and I were sitting side by side with the baby on my lap.
Dr. Langworthy rolled his chair to where he was almost knee to knee with
us, looked us in the eyes, and said “Bad news comin’, kids.” I will always
appreciate his directness. He went on to tell us that the MRI showed 3 primary
brain tumors causing very small seizures, not panic attacks. Tears just began to roll down my face. I wasn’t
sobbing. I didn’t even feel like I was
crying, except that my face was wet. Dr. Langworthy took my son off my lap and
handed him to a nurse in the hall. He
came back and grabbed mine and Eric’s hands and prayed with us. Then he continued. Based on the fact that Eric was a healthy
27-year-old, it was very unlikely that it was brain cancer. Statistics predicted it would be testicular
cancer that had metastasized to his brain.
A full body CT Scan was immediately scheduled
to try to find where the source of the cancer was located and how much it had spread. We were also told to be considering
if we were done having children, because if not, we would need to think about freezing some
“stuff” to use later, since Eric would probably be sterile on the other side of
all of this.
Oh... and also, we found out that Eric couldn’t drive
until he had been “seizure-free” for 6 months. So, before lunchtime, we were asked to begin processing that Eric had 3 brain tumors, we might have to be finished having kids, and we were down to 1 driver in our home.
At this point in the day, we had already called our parents to let them know what was going on. It was almost worse telling this awful news than hearing it. Eric's parents met us at Olive Garden after the CT scan. That's what you do in a crisis... eat, right? As we were being seated, Eric's phone rang with the CT results, so he stepped away from the table to be able to hear better.
I followed him into the little room between the exterior doors and the lobby. It was SO AWFUL. His whole torso was
showing evidence of cancer. He had
cloudy spots all over his lungs that shouldn’t be there. All the lymph nodes in his torso were huge.
So the probable diagnosis changed from testicular cancer to lymphoma or
lung cancer. We went back to the table and told his parents. My incredibly soft-hearted father-in-law just
covered his face and cried. I was
crying. Our poor server was terribly uncomfortable and probably thought we
were crazy. This certainly isn’t Olive Garden’s fault,
but I still don’t like to eat there.
The next
step was to get a “slice” of a lymph node to view under a microscope to
determine what kind of cancer it was. Unfortunately, it turned out that there
weren’t any infected nodes that were easily accessible. Dr. Langworthy was able to get us in to see an
excellent surgeon, named, no-joke, Dr. Jimmy Carter. After checking all the scans, Dr. Carter
decided he felt best about getting to a lymph node behind Eric’s sternum in a
procedure called a mediastinoscopy. I
sat there and listened as Dr. Carter told us all the risks. I just immediately picked up the pen and
started to sign the consent. Dr. Carter put his hand over mine to stop me. He told me
that he wanted to make sure I understood that because
of the placement of the lymph node he was going after, he could prick the
sack around Eric’s heart or hit his lung, which could cause it to
collapse. He assured us that it was the easiest
infected one to get to, but it was a dangerous procedure. So, we signed, and the procedure was
scheduled for the Monday following Memorial Day.
Next… we had a week to think… and sit… and
think… and sit. We cancelled some events
in which Eric was scheduled to sing in the coming months. Dr. Langworthy told Eric not to leave town, so my 2 brothers-in-law
came and hung out with him while my sisters and I went to an annual family
event.
 |
| Eric and AbiLyn on the mall trip. |
We just kind of wandered that week. We took the kids to the mall, the park, just... wherever.
A very close friend/cousin of Eric's brought his
family and spent time with us. I probably
drove Eric crazy, because I didn’t want to be away from him… ever.
It was
during this week that God gave Eric 2 songs that he learned how to pick out on
the guitar he had just begun to play a few months before.
It was during this week that God gave Eric the
verse Ezekiel 16: 6- “And when I passed by thee, and saw thee polluted in thine
own blood, I said unto thee when thou wast in thy blood, Live; yea, I said unto
thee when thou wast in thy blood, Live.”
It was during this week that we had the discussion of, “I think I can pull
off raising our daughter, but I have NO IDEA how to raise our son,” and “I can’t
stand to leave you and the kids.”
It was during this week that he got calls
from friends, past and present, most of them crying, all of them offering
prayer and whatever encouragement they could.
He was on the schedule to lead worship the night before his surgery. He’s a methodical guy, so he led. Maybe it was the horrible color of the suit
he wore, but to me, he looked gray in the video. He didn’t have the breath or
energy to lead worship the way he had led in the past, but he did his best. (which, in
my opinion, is still better than most.)
Finally, the
day arrived to find out what kind of cancer it was and what our
next steps would look like. My pastor, parents, and a few friends all asked me if
I wanted them to come sit with me during the surgery that was supposed to last
1-2 hours. I told them all, “no.”
Maybe it’s a southern thing of, “no, I’m
fine.” Or maybe it’s a thing of me being independent to the point of idiocy. I
really think, though, that I didn’t want to have to make small talk. I didn’t
want to have to worry about my reaction, or seeming brave. I didn’t want to hear any platitudes, that
would have felt useless in the moment. I
just wanted to sit there and wait.
About an hour into the procedure, my dad showed up. Oh my goodness, was I glad to see him! He didn't say much, which is very unlike him, but it was perfect for the moment. And we waited. And waited. FINALLY, 100 years later, Dr. Carter came out. He said that everything had gone fine. He said that they couldn't see any cancer in the slice of lymph node he removed. My dad spoke up and wanted him to verify that it wasn't cancer at all. Dr. Carter explained that all he could guarantee was that there was no cancer in that lymph node, and that they would send the sample for further testing. He explained how the scar would look, shook my dad's hand, gave me a hug, and left.
So, Tuesday
and Wednesday go by. Thursday, we get a
call to go to the Vanderbilt emergency room as soon as possible- they were expecting us. On further inspection of that
piece of lymph node, they found evidence of an infection similar to a fungal infection called Coccidioimycosis, or “Valley Fever.” So, we
pack a bag, drop our 3-year-old and 8-month-old off at my parents’ house, and
get to Vandy.
After being escorted, immediately, to a room, a young-looking girl
is doing a routine blood draw on Eric. When she went to swap tubes, the part
that stayed in Eric’s arm malfunctioned and kept squirting blood, which isn’t terribly uncommon. He and I were kind of laughing about it,
because it looked so terrible. She was
NOT laughing, and started getting shaky and nervous. She finally got everything worked out and
left.
A little while later, an
administrative person came to speak to us.
He said it was such an unusual case that he wanted to come meet us. He went on to give us A LOT of NEW
information. Apparently, this type of
fungus is from an airborne spore and, based on where you are located geographically, is pretty common. Most people breathe it in, get a cold, and
get over it. Most people with a healthy immune system, that is. Since Eric’s
medical history showed that he was rarely sick, they at Vanderbilt, had assumed
that he had undiagnosed HIV. This man said they had run the test, again, after the first
one came back negative for HIV. Of course, the 2nd test was
negative, as well. (Later, it occurred to us that THAT was why the poor girl
was freaking out when Eric’s blood was pooling all over the table. She thought
she was drawing blood for a positive HIV test…Bless her heart, I would have
freaked out, too!)
So, they
took us to another room and we waited a while longer. We had to tell about time frames and symptoms over and over again, because Vanderbilt is a teaching
hospital, and we were working our way up the chain of seniority.
By the end
of the night, we had learned that, unchecked by meds or an immune system,
Valley Fever, which is found in the Southwest desert region of the United States and
South America, will spread into your lungs, lymph nodes, and at its worst, your
brain. What the doctors thought were
tumors on Eric’s brain, were actually lesions, which look the same as tumors in an MRI
and CT scan. They didn’t, technically,
have a confirmed diagnosis of Valley Fever, because the way to confirm it, is
to re-grow the fungus from an infected biopsy.
They already had the samples retrieved by Dr. Carter and should be able
to grow the cultures from them in a week or so. In the meantime, since it looked
so similar, and was so advanced, they wanted to start treatment the next
morning.
They had no
idea why it had spread like this in Eric, given his generally good health. They had no idea how he even came across this
particular fungus. They asked us 100
TIMES if Eric had been to a desert in the last few years. He kept telling them
he had gone to Dallas for work, but had not left the downtown area the whole time. Almost every doctor that came through said
how impressed they were that Dr. Langworthy had caught it. How that 95% of doctors would have sent Eric
home with an anti-anxiety med for panic attacks.
Treatment
would be 6 weeks of Amphotericin B which is an IV infusion given through a PICC line. It’s a really nasty drug, but
slightly less nasty than regular Amphotericin. They told us we were lucky that this new
version of the drug had recently been FDA approved since it’s side-effects
weren’t as bad. The side effects still
included nausea, shaking (like shivering), flu-like symptoms, fatigue. It was really yuck.
Once we got through the first few hours of diagnostics, hospital life was pretty dull- Eric would get his
infusion, we would sleep a lot, and walk around the hospital. We enjoyed
watching the Celtics beat the Lakers in the first 2 games of the NBA
finals. We got to know the nurses.
Sometimes they would come hang out in our room and chat. I think we were less
depressing to be around than others on our floor. We found out that a man down the hall had the
same thing as Eric- but, it was a confirmed
case in a man that was HIV positive. He had
taken a Hummer out to the desert to joy ride.
They knew why he was so sick.
5 days went
by and they couldn’t get any cultures to grow for a confirmed diagnosis. So, they trained me on how to hook
up Erics meds via an IV pump, sent orders to the local pharmacy, and sent
us home.
Every day for
about 5 more weeks, I would hook him up to a saline bag which took 30 minutes. If Amphotericin
B mixed with the saline (salt mixture), it would congeal, so I had to push a
dextrose (sugar mixture) syringe to clear the line between the saline and the Amphotericin
B. I would then hook up the Amphotericin
B which took about 90 minutes to run. One more dextrose push, and then we
were done for the day. The flavor of
anything I pushed through Eric’s PICC line would come up his throat. It was really weird for him, and he hated it.
He usually didn’t get the shakes while taking his infusion, but the ONE TIME we
had company while he was taking it, he got them. It was so pitiful. It was like he was
freezing cold, and couldn’t stop shivering.
I did what they had told me to do, and gave him Benadryl, which,
eventually, stopped his shaking. Nothing could be done to help the nausea, flu-like
soreness, and exhaustion. Not often, but some days he would say how much he was
dreading it… and not often, but VERY FEW days, I would just skip it. I couldn’t stand hooking him up to that STUPID
IV, knowing how it would make him feel. Most days, he powered through,
though.
 |
| July 2008 |
I remember one day, in particular that
Eric was laying on the couch, hooked up to his treatment, and it was
dinner time. My daughter was flitting around the darkened house while I was trying
to get dinner going. My baby son started
crying because he was hungry, too. I fixed him a bottle, but didn’t feel like I
had time to just sit and feed him. I
felt so inept, but asked Eric if I could lay Lex on the couch beside him while
he took his bottle. Eric has told me since then, that he was thankful to feel
like he had something to contribute.
Through all
this, the doctors couldn’t get any confirmation on a diagnosis. They told us that the FDA had just approved a
urine test to confirm Valley Fever, and it would be available as of July 1. So, we went to the appropriate doctor (I can’t
even remember where we went for this particular test), and it came back NEGATIVE.
So at this point, there is NOTHING- cultures, blood work, urine- to confirm
this diagnosis. We are going, solely, on
the information that it looked “similar to” Valley Fever under a microscope and
it had attacked Eric’s body the same way Valley Fever would in someone that was
immune-compromised. We didn't know what else to do, but to continue the treatments, and our summer rolled on.
 |
| On the deck at the lake house- July 4th, 2008 |
It was our tradition to go to my parents' lake house every July 4th. We took his IV pump and meds. He stayed at the house and sat through his treatment while everyone else went down to the lake. I offered to stay with him, but he told me I should go and reminded me that he mostly slept through it, anyway. So, I took the kids and went with the rest of the family down to the dock. I nearly cried when a very low-key uncle I love, stayed with him. My uncle said he preferred not to go to the water, anyway. Whatever the reason, small kindnesses, like that one, made that summer manageable.
I was doing
my best to plod on through the summer. One night when I was dropping my
daughter off at Vacation Bible School, I was chatting with some church
ladies. One lady, I had known most of my
life, who happened to be a caterer, just looked at me, and said “It must be so
hard for you to have 2 small kids and have to deal with all this.” I hadn’t
thought about it like that, I guess, because I nearly started crying. OK, not "nearly"- I DID start crying. She offered to bring us dinner for a few
nights. I, gladly accepted, but, again,
felt inept.
We finished
out the summer much like that. Eric would lay in bed most of the day. The company he works for, Optimum Solutions, Inc., was absolutely incredible to him. He was able to work from home. We didn’t
have a laptop or Wi-Fi. He would log on
at our desktop PC, turn up the speakers, and go lay in bed, waiting for the “ding”
that signaled a new email. He would get up and address the issue, and then go
lay back in the bed. That’s pretty much how he spent 8am-5pm each day.
Once he was off his IV meds, his office
offered him a promotion that would require him to be on site. They, also, arranged for another employee that lived in town to pick him up each
day since he still couldn’t drive due to the seizures. He, somehow, closed out
the year with a promotion and vacation days left over, at the peak of a
recession. You’ll never convince me that
God doesn’t care about the small details.
After the IV
meds, Eric was prescribed an oral medication called Vfend that he was supposed
to take for another year. It didn’t make him feel quite as bad as the IV meds,
but they still weren’t great. One of the side effects that bothered him most was that it messed up how he viewed color. He is a fantastic artist, and he was VERY frustrated by the loss of that escape into his sketch book that he has always enjoyed.
In October,
Eric had another CT scan to measure the lesions on his brain and see how
his lungs and lymph nodes looked. FINALLY, we were able to see some
progress. The lesions on his brain were totally gone.
His lymph nodes, while still enlarged, were much smaller than they had
been. His lungs still looked much too
old for his body, but were improved. I felt
SO RELIEVED. I didn’t realize it at the
time, but I had been, mentally, holding my breath since Memorial Day
weekend. When I heard that the treatment
for this unconfirmed illness was actually working, I breathed again.
We finished
out 2008 with orders to keep taking the Vfend, and still no diagnosis. We finished out 2008 with a chart at Vandy
that said he possibly had, or probably would develop Sarcoidosis. We finished
out 2008 with the information that his lungs looked very scarred and would
continue to get worse over his lifetime.
Eric was told that his lung capacity wouldn’t improve… not to expect to
be able to run, workout, be active, sing or yell.
If you’ve heard Eric sing, you can understand
why that was, simply, not acceptable.
Eric hasn't been back to Vandy... well, except to work out in their rec center through a corporate membership program. He stopped the Vfend at the end of 2008. He got back into leading worship in Spring 2009 and started working out, consistently, a few years ago. He gets an annual physical with our favorite doctor, Dr. Langworthy. He has a standing prescription for an MRI in case we ever need another confirmation that he no longer has any "holes" in his brain, but he's never used it.
While that experience was extremely difficult to get through, I'll never understand why it turned in to just a blip in our past. I'll never understand why others who receive that kind of news must endure chemo and radiation, and a string of surgeries, but we got off much easier.
We left 2008 with an understanding that we will NEVER have all the answers. While so thankful for the amazing doctors we encountered, THEY will never have all the answers. GOD, alone, has all the answers, and we are going to chase HIM. Not for answers about that terrible year, but because we refuse to leave any praise for Him unsaid. It takes ONE phone call to MESS. YOU. UP. Yet, He is surprised by nothing.
Every time I hear Eric lead worship, holding nothing back, I think of how he SHOULDN'T, physically, be able to do it, BUT GOD had a different plan...
I shot this video today, May 29, 2016.
*If this video won't play on your mobile device, you can view a similar clip, posted on our church FaceBook page here.
**DISCLAIMER-These events and descriptions are as I remember them. I am NOT a medical professional and I have slept since then, so there's a really good chance some of these details may be a little off.
