Well dude, we just don’t know

by Rachel Hill

In case you haven’t figured out by now, Kevin and I are big Lebowski fans.  For whatever strange reason, we find ourselves wandering back to that odd little 1998 Cohen brothers film.  Sure, it’s filled with a stupid amount of foul language and after watching it probably about 30 times, I’m still not quite sure I could tell you the details of the plot.  But at the end of the day, it’s damn funny.  And damn funny is what we need right now.

Oh my word the past week has been crazy.  Really the past year (or two) have been crazy, but that’s beside the point.  I’m a little behind on updating, as usual, but it’s because everything just keeps changing so fast!  Last time I needed to send out an update, it was write or sleep and sleep won out.

Nearly three weeks ago, Kevin and I made a trip to the NIH for final testing to determine if he would be allowed back onto the clinical trial.  Thankfully they had “good” news for us… the tumors had shown progression since he’d come off of vemurafenib four weeks earlier.  This was clearly no surprise to us as these tumors appeared on the side of his face, and started bulging out like crazy, in just that short time.  Once the doctors told us everything was a “go”, they told us that Dr. Rosenberg, literally the father of modern immunotherapy, wanted to meet with us.  The doctors assured us it was nothing bad, just something unusual.  We were totally nervous, especially when he came in and started asking questions like, if the vemurafenib was working, why did you come off of it?  We very carefully said, “Uh, because your team said I had to be off all cancer drugs for at least thirty days prior to starting treatment?”  He continued asking questions along this path and we were starting to really worry we’d somehow screw things up and were about to be tossed to the curb.  We discussed our understanding that vemurafenib could, and most likely would, stop working at some time in the future with little warning and that when the cancer came back, it would most likely be too aggressive to be treatable by TIL therapy at that time.  Since TIL therapy had long term success rates, unlike the temporary nature of vemurafenib’s success, we wanted to “swing for the fences”.  He smiled and agreed with us, saying that line of reasoning made perfect sense and he would do the same thing.  I guess maybe some folks don’t think like that?  We sort of got the sense that it was unusual for us to make this choice, but he was totally fine with it.  I think he just needed to make sure we were really informed in the choices we were making.  Whew, one near crisis averted.

So they gave us a start date for chemo of June 1st, and we headed home to get ready to be gone for three weeks.  I had already flown the kids out to the west coast (to my cousins’ house) and they were settled in and happy (though I was missing them like CRAZY).  I was glad we’d made the choice to bring them out because it would have just been a nightmare and crazy expensive trying to get it all worked out in just ten days on top of everything else.  I put out a request here on the blog and an amazing reader covered my friend Lila’s ticket from California to come out and help me clean house and get caught up on the scary scary mountains of paperwork and bills.  And just after that another dear reader covered my ticket up to D.C. with Kevin for the last trip and I am forever grateful.  It turns out Kevin got really sick the first night and says he wouldn’t have made it without me.  Sometimes I think that traveling with him is a bit of a luxury and am hesitant to ask for help, but it always comes at a time when we REALLY need it, so thank you both!

I am so grateful that Lila was able to come out.  She and my sister helped me get every corner of the house cleared out and cleaned up and a sweet teenager in the neighborhood who helps me out on occasion came and scrubbed every tub, toilet, and floor to within an inch of its life.  On Thursday May 30, Kevin flew up to D.C. to get checked into the hospital.  I had an emergency dental work I had to get done, so I spent two hours at the endodontist on Wednesday, then another six in the dentist chair on Thursday!   Six hours!  Are you kidding me?  I was seriously traumatized and never want to go back.  Unfortunately, I have two more cracked crowns and two cracked fillings, all attributed to grinding my teeth at night from stress… hmmm, I wonder why?

So anyway, sorry I got off track.  Thursday afternoon, Kevin flew to D.C.  He made it to the NIH and got settled into his hospital room.  We started posting on Facebook etc. his address and room number so folks could send us mail.  Sarah and Lila and I finished up every last detail we could think of on the house and stayed up till midnight getting bags packed, snacks prepared, etc.  Because we were up so late, we didn’t get the super early start like I’d wanted.  We finally headed out on our 11 hour road trip by around 9:30 in the morning.  At about 10:30, I got a call from Kevin.  The first thing he said was, “Bad news.  Turn the car around.”  I sighed, slowed the car down, and looped around to head southbound as he explained that while his TIL cells had been doing just great, once they did the IL-12 genetic modification, his cells started fizzling out.  Apparently this happens in about 10-15% of cases.  Nothing to worry about, they’d try again with another set of cells, and we should come back in ten days.

Ten days?!  Kevin had been in tons of pain for several weeks now and was just starting to experience liver tumor related nausea.  We weren’t sure if we could wait ten days!  Still, we had no choice.  He finished telling me the rest of the story and then went down to the travel office to get a flight booked to come home that evening.  I hung up and explained everything to an awestruck Sarah and Lila.  They both commented multiple times, “I can’t believe you’re so calm!”  Yeah, well this isn’t the first time  sweetheart!

I was outwardly calm, and I suppose inwardly, at least at that moment.  Still, I was awestruck.  So many times we had seen everything fall apart to then suddenly fall into place more perfectly than before.  I trusted that God had a plan in all this, but I was frankly a little frustrated that I couldn’t see it yet.  So we went home, asked our house sitter to hold off a week, and Kevin told his boss he’d be back to work on Monday.  

But that changed too.  Before anyone had any idea Kevin would be sent home from the NIH, he had a PIC line installed.  This is a very standard procedure performed on thousands of cancer patients every day.  It should be no big deal right?  Well, as it turns out, there was a problem installing Kevin’s.  The procedure is to insert a long thin tube through a large vein in his arm which would end up dispersing medicine directly to the heart.  Well Kevin’s tube decided to go north (toward his neck) rather than south to his heart.  No big deal they tell him, they’ll just pull it out a bit, hold up his arm (for the gravity assist) and try again.  Two more times and they got it in the right place, only to find out 10 minutes later, from different doctors, that he would be sent home.  Glad they worked so hard on that.  

But here’s the rub.  Sunday night I noticed Kevin was warm and took his temperature.  Yep he had a low-grade fever.  Combined with the fact that his nausea had returned, we decided to head off to Emory to get him checked out.   Of course the fever was gone by the time we actually saw someone at the hospital, but now Kevin was complaining of pain at the edge of his clavicle.  The doctor became more concerned about this, than the fever or nausea we came in for, and was suspicious of a blood clot along the path where the PIC line had been installed.  She sent Kevin down to the E.R to get a CT Scan.  After waiting an hour for that to take place, the E.R doc comes in and says “We didn’t find anything of concern on Kevin’s clavicle, but what we did find was a blood clot in his lungs” (a.k.a Pulmonary Embolysm).”  What?!?  We didn’t even come in for that!  We came in for fever and nausea!  Oh but it gets better.  She gets him checked into the hospital and started on a blood thinner called Lovenox.  Kevin stayed overnight and I went home to get some sleep.  In the morning a different set of doctors came in asking Kevin if he had any shortness of breath or chest pressure.  Kevin said no, and that we had actually come in for something else.  But were very concerned and asked again “are you sure?”.  Kevin was thinking to himself, I have LOTS and LOTS of medical problems, but thank God, breathing problems are not one of them.  At this point his doctors started thinking it was a false positive and sent him for a different test to confirm.  Sure enough he’s scores 100% on the breathing test and they stop the blood thinners and label the whole event a false positive on the blood clot and sent him home.  They were right, no issues developed, and the swelling went away and Kevin went back to work for the rest of the week.  

So as of now Kevin is all set to fly up to the NIH Sunday afternoon to give it another go with the second set of cells.   It could fail again, or it could work perfectly this time.  Well dude, we just don’t know.  

So it’s one roller coaster after the next, good news, bad news, good news, bad news.  It’s like the story of the the Zen master and the little boy from the movie Charlie Wilson’s War.  The version from the movie goes like this… (other variations of the story are referred to as “The Farmer’s Luck)

There’s a little boy and on his 14th birthday he gets a horse…
and everybody in the village says, “how wonderful. The boy got a horse”
And the Zen master says, “we’ll see.”
Two years later, the boy falls off the horse, breaks his leg, and everyone in the village says, “How terrible.”
And the Zen master says, “We’ll see.”
Then, a war breaks out and all the young men have to go off and fight…
except the boy can’t cause his legs all messed up. and everybody in the village says, “How wonderful.”
And the Zen master says, “We’ll see.”

We watch in hope for the Lord… Micah 7:7

{ 2 comments… read them below or add one }

1 Debra Paul June 9, 2013 at 12:57 pm

Hi Rachel. I’m so honored to pray for you. Debra

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2 Carol June 10, 2013 at 11:30 pm

Hi, Rachel. I’ve been in AZ helping my parents sell their house and move into assisted living. My mother has advanced stage Alzheimer’s and my stepdad has mild dementia and DID NOT want to move. It was necessary, however, and we convinced him it was in my mother’s best interest. He complied initially but has been fighting it since. So, the whole process was extremely hard–emotionally and physically. They are now moved in and my mother, at least, is happier than she was. My stepdad is adjusting.

I watched the video about the Art of Asking–great video. The message can be applied in so many areas–certainly yours.

We continue to pray for you and Kevin. Life is hard and so beyond our understanding. Here’s a quote from Brennan Manning: “There can be no faith without doubt, no hope without anxiety, and no trust without worry. . . they are no cause for alarm, because they are not voluntary. When they threaten to consume us, we can overpower them with a simple and deliberate act of trust. “Jesus, by your grace I grow still for a moment and I hear you say ‘Courage! It’s me! Don’t be afraid.’ I place my trust in your presence and your love. Thank you.”

Love you both, Carol

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