Monday, June 8, 2015

Screening at NIH

Patrick and I flew to Bethesda for a screening visit.  The research team wanted me to have yet another CT scan, and to have my veins assessed, among other tests.  Blood was drawn--thirteen vials of it--and someone administered the fastest EKG I'd ever experienced.  Then came a wrench in the works.  The scanning area was jam-packed with patients that day.  When my appointment time came and went, I asked a receptionist if there was a problem.  "See that question there?" she asked, pointing to my chart.  I looked where she indicated and read the words:  Are you currently pregnant?  "We're waiting on the lab to give us the answer to that before we can scan you."  I returned to my seat wondering about the dose of radiation I'd be receiving.

Three long hours later (mostly spent waiting), my scan was over.  Patrick and I grabbed a quick lunch in the basement cafeteria, then returned to the clinic. We were taken to a small exam room to wait some more. A nurse peaked in briefly saying, "You're finally here!" This was the person who I had spoken to so many times on the phone--I recognized her voice. She seemed genuinely happy to see me, and I certainly was happy to be there.

Next, Vein Lady appeared. She asked me to hold out my arms.  With gloved hands, she then pressed, turned, squeezed and otherwise studied various areas of each arm for a surprisingly long time.  Phlebotomists never have had trouble drawing blood from me, so I was surprised at Vein Lady's response when I asked her if my veins were "any good".  "Eh," she frowned, still peering at my arms, "they are not the best.  But they will be O.K."  Then she explained what would happen during the apheresis procedure that would take place at my next visit to the NIH hospital, if the day's screening didn't disqualify me for the trial.

Next up: the immunotherapy fellow.  This is the doctor who would work on my case along with an attending physician.  He introduced himself and then we went through my medical history.  Next, he explained the various steps I would potentially go through if I was accepted into the trial.  He described a litany of side-effects that seemed to get more gruesome the longer he spoke, but then he assured me that even though they went on for days, the side effects were all temporary.  When this initial meeting concluded, he stepped out to find the attending physician, who had just finished reviewing the recent scan of my lungs.

I recounted the story in a blast-o-gram:

Sent:  March 20, 2015  2:28 PM

[The attending doc] had only good things to say!  He reviewed my scan of a few hours prior and compared it with January's.  He said that the tumors are growing, but at a slow rate.  He did not find any new tumors (yay!).  He thinks that being off chemo for this long (over a year) has not hurt me, and will potentially be a help in the upcoming treatment.  He does not want me to start chemo after the lung surgery.  I can't tell you how happy I was to hear that! 

He said that he has never had a patient this far-removed from their final chemo infusion, nor one who has had so few treatments.  Undergoing chemo is one of the criteria for the study, but most of his patients have tried multiple chemo regimens and are in pretty rough shape by the time they get into a trial.  He used the word "excited" many times, and seems as eager as we are to get started.  He needs the OK of [the Principle Investigator] but he expects that that will happen on Monday when he presents my case.

The attending doctor described the tumors in my lungs as "nickel and dime sized".  He recommended remaining chemo-free until the trial, which under the best circumstances would take 2 to 3 months.  He thought that my current state of health would be a great asset, and that adding chemo now would provide no benefit.  He explained the steps of the protocol again, and commented, "The stars really seem to be aligned for you." When Patrick asked about the statistics for other patients in the trial, he shook his head and said, "We're just too new at this to be able to give you any odds for what the response will be."

Two days later, on Monday, my case was to be presented to the team of researchers, headed by Dr. Rosenberg.  If they found no reason to disqualify me, I'd be offered the opportunity to participate.  I knew there were no guarantees that it would work, but I was excited to be a part of something that could potentially cure me.

When I got the much-anticipated call from the immunotherapy fellow, I couldn't wait to send out the news:
Sent:  March 23, 2015 4:44 PM

WooHOOOOO!  Good news--I'm IN!!!
[immunotherapy fellow] called just a few minutes ago and said, "all were in agreement at the tumor board this morning that you are a good candidate for the trial...if you still want to participate." 

"Want to?  Yes, I'm dying to!" (no, I didn't say that...haha)

Praise God, Praise God, Praise God!
YAAAAAAAAAAAAY!  I'm in!  I'm a LAB MOUSE!  Woooo!

So happy : )  : )  : )  THANK YOU, PRAYER WARRIORS!  ...the adventure continues!


The doctor explained that I would need to return to the NIH facility to have:  lung surgery to remove a tumor, a brain MRI, a kidney study, and an apheresis procedure to collect about a pound of white blood cells from my body.  Others would be responsible for scheduling the various procedures, but he expected they would cover all of the items in one visit that spanned three or four days.

I was ready to pack my bags, kiss my babies, and get on a plane to Bethesda.  Surgery was scheduled for April Fool's Day.  Joke's on you, cancer.  We're coming to get you.

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