Tuesday, September 1, 2015


Summer is now in her last (hot!) throes, and I am feeling madcap launched into yet another school year. My repeated refrain has been "I'm not ready!!"

And a LOT has happened since last I've written.

It has been quite on my heart to share this part of our story in writing, but every time I feign to begin I have allowed anything from the actually urgent to entirely nonessential to thoroughly interrupt my intentions. And so, tonight, I will share a slice of our story in retrospect. Fair warning...there are a lot of somewhat boring insurance details in this one, but hang in if you will...they serve a purpose.

In April, the decision was made to extend Eric's chemo on a lesser dosage for an additional three months. Due to a cacophony of further events, we, as a result, lost access to the UCSD system and as a result of that, the surgeon who had been the most consistently hopeful voice of expertise in Eric's care.

I fought the ensuing insurance battle as best I could, and played the HMO game having been given the assurance that when this round of chemo was up, we could again revisit the surgeon to discuss liver resection.

Now one quick word on resection...it is a drastic, highly detailed, not always available for a variety of reasons (patient's presenting disease, surgeon's skill, etc.) It is also the ONLY consistent path in publication for stage four disease to reach full remission/NED status. Pretty much, to our understanding, the people who have been able to fully beat this from stage four have likely gone this path. It is also, from that very first week or so of learning of Eric's diagnosis, the only option that fully "felt" right.

In May it was determined that the lesser chemo wasn't working, and the disease was growing. Treatments with increasingly involved side affects and decreasingly effective rates of success began to be discussed. Prognosis of shorter and shorter terms began to be thrown around, and it was at about this time that I asked the insurance company to allow us to see the original surgeon for an updated opinion. And then things began to get a bit squirrelly. Even within the HMO approvals began to have inexplicable delays, and at one point I was told that a request wouldn't be written because "we just know it will be denied...so we won't even write your referral request." When I asked to be referred regardless, I was willing to take a denial, I was told in no uncertain terms that they absolutely would not. (Denials can be legally contested, as opposed to ambiguous spoken refusals to even attempt referral.) And as the hours of conversation and pages of notes added up...the disease in Eric continued to grow untreated and unchecked.

At this point we made the decision to go as an out of pocket patient to the surgeon for a second opinion. It was a little frightening as the office visit alone could easily cost upwards from $800-$900, but we figured with the stakes we were dealing with it was worth it. Because of the rigamarole we had already encountered, it was now the end of the month. We had a wild plan with slim margins of time to work with...and it's success hinged on a "yes" for surgery from the world renown liver surgeon. We had already visited another liver surgeon who told us Eric's case was inoperable, but we both felt it was worth asking.

The UCSD surgeon looked at Eric's films and still saw possibility. In fact, his survival percentages, although still small, were growing  even from previous conversations. Instead of a picture of bleak, quickly decreasing health with perpetual life long chemo, with resection he saw room for long stretches of treatment free health, if not a tiny possibility of full recovery. Where we had earlier in the month been told to begin to resign ourselves to maybe another 2 years, this doctor spoke of "touch ups", if needed, 5-10 years down the road. Our wild plan was gaining fast momentum.

In the car after the visit (after which, by the way, the surgeon knowing our situation DRASTICALLY adjusted his fee!) I felt a bit giddy with possibility...and began to consider what I needed to do to try to get coverage for Eric to have access to this surgery. It was a Friday afternoon, and Monday would be the first of the month - if we wanted to even try to get Eric in for surgery anytime soon, we would have to set our plan in motion and drop our insurance company that very afternoon. We made the call from the car, and started the process right away.

A diagnosis of stage four cancer, without having any insurance, is a terrifying thing indeed. When I could start making phone calls that Monday I was told we could possibly get some coverage at the fastest in maybe three weeks, but it would likely not start for at least another month, maybe even two. That would have, at the earliest, put us into July. We needed active insurance that would include the UCSD system and surgeon in order to even reserve an operating room...which with his schedule would be at the fastest about a month away from the day we started to request a date. So, I told everyone who would listen that I needed to have insurance approved, valid and set to go by Friday. Most people either laughed or audibly gasped and emphatically told me that there was absolutely no way that could be done.

But here's the thing. I didn't just make up Friday.

From the get go, in praying this surgery has felt like the best option for Eric. And in praying over this part, Friday was the day I was given to ask for. So I did. Every day, for hours and hours, keeping copious notes, from the beginning of their office hours to close. I started each morning asking God who I needed to call that day, and I didn't stop until I got through that day's list. And as each day's list was completed, I stopped. I didn't look for more to do, I waited until the next morning and repeated the pattern...ask, call, stop. And through it all, I prayed as well that I not get impatient, insistent, unkind, or hopeless. I asked that my heart be delivered to the other side of this project intact and able to love. Because insistent and driven me, when I don't get my way, is anything but loving.

Wednesday we were accepted into Anthem Blue Cross, but were told we would have to wait until July 1st for it to be active. I told them I needed it active by Friday. They said that even their fastest appeals process would take even longer than that. I appealed anyways.

Friday came and my "to call" list was very short...in fact, God had me wrap it up mid morning without any more answers and I began to get a bit concerned. He then told me to do math with my kids - we were trying to wrap up the school year, and needed to plow through quite a few lessons. So I stopped. Somewhat hesitantly, but I wanted to stick to my commitment to listen and stay in love. Even if I had to do math.

The kids and I worked on their math for hours. I began to nervously look at the clock, knowing that business hours for more easterly time zones were coming to an end. The phone rang at 3pm, closing time for some of the offices on our case. The completely awe stricken voice on the other end of the line told me in amazement that our appeal had incredibly already been returned (and they "had NEVER seen this happen!!") and we were approved...we had active insurance. They didn't think the system was physically able to generate our codes until Tuesday or Wednesday, but technically we were insured. I almost cried.

I hung up the phone and it immediately rang again. This time it was another department...the one in charge of generating ID numbers and codes. They wanted to call me because they "truly didn't understand how this could happen, it NEVER had before!" but we had a contract code assigned to us. As I took down the numbers the tears came even closer. I had to hold it together though...I needed to find the number for the surgeon's office, to see if I could catch anyone and start the process of setting a surgery date.

But as I hung up the phone, it immediately rang again...it was, of course, the surgeon's office. They "had been thinking about us just then, and were curious if I had made any progress toward getting insurance taken care of." Within minutes we had a surgery date, and as I ran to tell Eric the good news, the tears fell unchecked.

Now...are you ready for this? Take a look at our contract code - I had to take a picture because it just is too good to be true.


However we have felt throughout this last year, He has still been so good. He has been Present, He has been Provider, and has carried us through.


After the surgery, in which one of only two surgeons nationally who are even able to perform the degree of resection that Eric needed removed 70% of my husband's liver, the surgeon told me "We just did something beyond the cutting edge of medicine...there's a reason the other doctors told you this couldn't be done, because it isn't."


And we wait now for morning...Eric had a CT scan today to give our first peek in to what has re-grown in his month since surgery. We will get the results tomorrow when we meet our new oncologist (recommended by our incredible surgeon), and are PRAYING for clean healthy liver tissue with not even a single cell of disease. 


It is our greatest hope to move from this year of survival into one of revival! To shift phases and embrace health. But whatever the morning brings, may we follow God's daily plans for us, keep our hearts soft, and love well.