Patrick and I arrived at the Clinical Center at the National Institutes of Health late on a Sunday evening. Most of the building was dark and empty. Admissions had a lone worker who arranged for an escort to show us the way to the third floor patient area. By 10:00 PM I was in my room. Not a lot of sleeping happened that night.
Early the next morning I donned a hospital gown and robe on the advice of one of the floor nurses. An escort wheeled me across the vast facility to the apheresis lab, where Vein Lady was expecting us. I recognized her from my screening appointment a couple of weeks earlier. The tiny room was packed with equipment. It contained two stations, each with a bed, a small chair next to that, and a cell-separator against the wall behind each bed. The cell-separator is a complex machine having all manner of dials and gauges. It whirrs. It clicks. It spins and spins and spins the blood. It reminded me of Mr. Peabody's Way Back Machine.
Vein Lady had command of the room. Nothing happened without her approval. With one nurse on each side of the bed, I lay there, arms outstretched, palms up. The nurses discussed the various candidates (veins). They attached a warm, inflatable cuff on each arm and positioned and re-positioned them until both nurses agreed on the locations for the two required venipunctures--one for “blood out”, and one for “blood return”. The nurse on my right slipped a gigantic needle into my arm. Vein Lady put a smaller needle into the back of my left hand. Blood traveled out the big needle, got mixed with an anticoagulant at a juncture of two catheters, and then made its way through the machine.
My entire blood volume traveled out, through the machine, then back into me a total of five times. It took five hours. The first cells to exit and go on their amazing journey returned in about ten minutes. “Welcome back, guys,” I said to the bright red blood in the tube leading from the machine and back into my left arm, “I missed you!”
The first 4.5 hours were not so horrible, but that last thirty minutes was difficult. I had to lie so, so still the entire time. I was allowed to move my left hand a bit, but the machine would sound a dire warning if I bent it too much. My right arm though, had to remain stationary. I was given a foam ball to squeeze with my right hand. I had to be very careful to not move my arm when squeezing the ball. They covered me with an inflatable, heated-air blanket, and made sure that I stayed warm during the entire process. My right shoulder and arm ached after the first couple of hours. I so wanted to bend my arm!
Vein Lady barely left my side during the entire process. When she did step away, she was never more than five paces from me. She was insistent that I not fall asleep. It was difficult to stay awake, because I was sleep-deprived from the previous night. I spent the majority of the time reading a book, but every hour or so I apparently drifted off. Vein Lady would lean over the bed and remind me that I must stay awake.
Five hours crept to five-and-a-half hours before I was finished with apheresis. The machine collected my white blood cells into a blood-bag. It weighed 460 grams (about a pound). Vein Lady told me that the cells alone weighed 410 g; the anticoagulating agent accounted for the balance. The squishy bag contained a translucent fluid that was the color of orange poppies. I wondered how many cells it took to weigh four hundred ten grams.
Vein Lady left the IV in my hand, covered it with a transparent dressing, then wrapped it with a stretchy, non-adhesive tape called CoBand. CoBand is everywhere at the Clinical Center. Instead of using bandaids or cloth tape, they wrap this elastic, usually brightly colored gauze ribbon around your wound. It applies pressure and keeps the site covered. I am so fond of CoBand because there is no adhesive involved. Adhesives and my skin are not friends.
By now it was after 1:00 PM. The apheresis nurses had ordered a bag lunch for me, so when I was nestled safely back into my room, I scarfed the granola bar and the string cheese, giving the rest of the bag's contents to my also-hungry spouse. I dialed “3” for Food Service, while he escaped to find a cafeteria.
Depending on how far I go in the trial, I may have to undergo this procedure again. Vein Lady informed me that it would be only "one blood volume" next time. What a relief.
Tuesday, June 9, 2015
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!
Love,
Celine
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.
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!
Love,
Celine
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.
Friday, June 5, 2015
Vacation and Verdict
Cancer patients and travel are a thing. It's true. Trips are planned as happy events to look forward to during the grueling months of treatment. Time away takes on new significance and becomes a higher priority when dealing with a serious illness. Soon after my diagnosis, my dear husband planned lots of trips, scattering them throughout the year. Some would include our children; some would not.
Me: We can't afford trips.
Him: I don't care about money.
Me: I care about money. What do you mean, "I don't care about money? Caring about money is your hobby."
Him: Where do you want to go?
Me: Rome!
Him: Uhhhh...where else?
Me: hahahaaaa...
One of the trips that we planned was a family vacation to Orlando. We'd leave for two weeks, allowing for our oldest daughter to spend her spring break in the Sunshine State with us.
I was waiting for news from the research nurse at NIH about whether or not I would be accepted into a clinical trial. They had rejected me twice, even suggesting that I look elsewhere for treatment options, but I appealed to one of the doctors to consider my case one more time. Two days before we left for Orlando, I began a novena (series of prayers) to Mary under her title, "Undoer of Knots"* with the intention that I would be accepted into the trial.
It was because of this family trip that I missed an email from the nurse at NIH. On the last Friday in February, an email message stating only, "Please call me when you get a minute" remained unopened until Saturday night. Of course, I would not be able to reach the nurse until the following Monday. This was it! The nurse knew whether I was "in" or "out" of the clinical trial I had been hoping and praying to get into ever since mid-December. My last contact with her had been over a week before, when she had helpfully cooperated in getting my case reviewed for a third time.
Early in the morning on Monday, I followed the daily meditation and rosary for Day 7 of the novena. I left a message on the nurse's voice mail, explaining that I was on vacation and would call her later that morning. Eventually, all nine of us travelers were up, dressed, and fed, so we headed out for the day's adventures at Universal Studios. Patrick and the boys headed in one direction, while the girls went another. After the first roller coaster ride of the day, while waiting for our party of nine to regroup, I slipped away to a quiet spot and dialed the research nurse's number.
Nurse: Oh, Celine! You're in Florida? Is it sunny?
Me: It's great! Very sunny. Do you have a verdict for me?
Nurse: I do. The thoracic team thinks that the node you pointed out will be useable for the trial.
Me: Hurray!
...
I spent the rest of the day spontaneously shouting, "I'm in! I'm in, I'm in, I'm iiiiiiiinnnnnnn!" I texted the people whose numbers were stored in my phone (there were around five...my phone is awful), and fairly floated everywhere we went for the next several days.
Upon our return home, I realized after reading the mountain of paperwork that awaited me that I wasn't quite in just yet. NIH wanted to do their own set of tests and an interview before accepting me into the trial, any one of which could potentially be a deal-breaker.
Patrick and I headed to Bethesda shortly after returning from Florida. I might not have been "in" yet, but at least I could say that I was "not out". It was enough. We were on our way.
*Catholics pray to saints, including Mary. This is the novena I prayed.
Me: We can't afford trips.
Him: I don't care about money.
Me: I care about money. What do you mean, "I don't care about money? Caring about money is your hobby."
Him: Where do you want to go?
Me: Rome!
Him: Uhhhh...where else?
Me: hahahaaaa...
One of the trips that we planned was a family vacation to Orlando. We'd leave for two weeks, allowing for our oldest daughter to spend her spring break in the Sunshine State with us.
I was waiting for news from the research nurse at NIH about whether or not I would be accepted into a clinical trial. They had rejected me twice, even suggesting that I look elsewhere for treatment options, but I appealed to one of the doctors to consider my case one more time. Two days before we left for Orlando, I began a novena (series of prayers) to Mary under her title, "Undoer of Knots"* with the intention that I would be accepted into the trial.
It was because of this family trip that I missed an email from the nurse at NIH. On the last Friday in February, an email message stating only, "Please call me when you get a minute" remained unopened until Saturday night. Of course, I would not be able to reach the nurse until the following Monday. This was it! The nurse knew whether I was "in" or "out" of the clinical trial I had been hoping and praying to get into ever since mid-December. My last contact with her had been over a week before, when she had helpfully cooperated in getting my case reviewed for a third time.
Early in the morning on Monday, I followed the daily meditation and rosary for Day 7 of the novena. I left a message on the nurse's voice mail, explaining that I was on vacation and would call her later that morning. Eventually, all nine of us travelers were up, dressed, and fed, so we headed out for the day's adventures at Universal Studios. Patrick and the boys headed in one direction, while the girls went another. After the first roller coaster ride of the day, while waiting for our party of nine to regroup, I slipped away to a quiet spot and dialed the research nurse's number.
Nurse: Oh, Celine! You're in Florida? Is it sunny?
Me: It's great! Very sunny. Do you have a verdict for me?
Nurse: I do. The thoracic team thinks that the node you pointed out will be useable for the trial.
Me: Hurray!
...
I spent the rest of the day spontaneously shouting, "I'm in! I'm in, I'm in, I'm iiiiiiiinnnnnnn!" I texted the people whose numbers were stored in my phone (there were around five...my phone is awful), and fairly floated everywhere we went for the next several days.
Upon our return home, I realized after reading the mountain of paperwork that awaited me that I wasn't quite in just yet. NIH wanted to do their own set of tests and an interview before accepting me into the trial, any one of which could potentially be a deal-breaker.
Patrick and I headed to Bethesda shortly after returning from Florida. I might not have been "in" yet, but at least I could say that I was "not out". It was enough. We were on our way.
*Catholics pray to saints, including Mary. This is the novena I prayed.
Thursday, June 4, 2015
Clinical Trial, Try 3
In February, after mailing a CD with my latest lung images, and eagerly awaiting news that I would be reconsidered for a clinical trial, I received a message from the research nurse at NIH. They had reconsidered, but the answer was "No." The news was shared over the phone:
Nurse: I have your chart, and the doctor wrote a note. I want to read it to you. It says, "No suitable sites for resection. Largest one on the left would require an open thoracotomy, possible lobectomy. She should either look for other options, or rescan and re-evaluate in 6 to 8 weeks."
Me: What? How can that be? There's a node on the left. What size are they looking for?
Nurse: Between one and one-and-a-half centimeters across.
Me: I have one--it's in almost the exact location of the first one they were considering--it's almost a mirror-image.
Nurse: I'm sorry. I can scan your chart into our database and send it to the gastro department. They might have something for you.
Me: Is there a report? Can you send me the report?
Nurse: There's no report, it's just a sticky note on the outside of your chart.
Me: A sticky note?! Will you email me the exact words? This doesn't make any sense. I need to see it in writing.
...
I was stunned. What would it take to get into this trial? I met all of their criteria, but they weren't acknowledging it. I was crushed. "Seek other options?!" I had no other options--this was my option! It was my chance at the closest thing to a cure outside of a miracle that I knew of, and the door got slammed in my face again. I was devastated. I called Patrick at work and sobbed, "They said 'no'." I was utterly shocked to hear myself say the words out loud.
"I'm coming home," he stated. Despite my protestations that he needn't leave work, his mind was made up. "I'll be there as soon as I can."
I hung up the phone and cried. But then I remembered that priest. He had promised to pray that I would get into the trial. If my prayers weren't being answered, maybe his were...I turned to my left, and gazed at the Divine Mercy image hanging on my bedroom wall. If ever there was a time when complete trust was needed, this was it. I repeated the words associated with that image, "Jesus, I trust in You."
Between the time when I hung up the phone with Patrick and the moment he walked into the house, I had dried my tears, squared my shoulders, and decided that I wasn't going to accept a refusal without a better explanation from NIH. I didn't know which doctor had written the note, or anything about the processes in place for evaluating trial candidates, but I had to try something.
I grabbed my copy of the latest scan and loaded the CD onto my computer. I quickly found an image of the node that I thought would qualify me for the trial. Using the viewing software's measuring tools, I displayed the node's height and width on the computer monitor, then captured a screen shot. I composed an email to the nurse requesting that she ask the attending physician to look at the image attached to the email.
"Maybe," I reasoned, "they just stopped looking after rejecting the largest tumor (Jose). I'm sure that Jorge (a different tumor) will make them change their mind." Instead of a crumpled, crying mess, Patrick came home to find his wife in warrior-mode.
Within just a few minutes of sending my request for another review, the nurse wrote back to assure me that she would forward the email to [the attending physician that I requested]. A few hours later she emailed again to let me know that the doctor had submitted my case to the thoracic team for review.
I sincerely thanked the nurse for her help, hung up the phone, and fist-pumped the air. "Hallelujah!", I cried. Even if the answer came back "no" a third time, at least I would have the peace of mind of knowing that I had done everything within my power to get into that trial.
Nurse: I have your chart, and the doctor wrote a note. I want to read it to you. It says, "No suitable sites for resection. Largest one on the left would require an open thoracotomy, possible lobectomy. She should either look for other options, or rescan and re-evaluate in 6 to 8 weeks."
Me: What? How can that be? There's a node on the left. What size are they looking for?
Nurse: Between one and one-and-a-half centimeters across.
Me: I have one--it's in almost the exact location of the first one they were considering--it's almost a mirror-image.
Nurse: I'm sorry. I can scan your chart into our database and send it to the gastro department. They might have something for you.
Me: Is there a report? Can you send me the report?
Nurse: There's no report, it's just a sticky note on the outside of your chart.
Me: A sticky note?! Will you email me the exact words? This doesn't make any sense. I need to see it in writing.
...
I was stunned. What would it take to get into this trial? I met all of their criteria, but they weren't acknowledging it. I was crushed. "Seek other options?!" I had no other options--this was my option! It was my chance at the closest thing to a cure outside of a miracle that I knew of, and the door got slammed in my face again. I was devastated. I called Patrick at work and sobbed, "They said 'no'." I was utterly shocked to hear myself say the words out loud.
"I'm coming home," he stated. Despite my protestations that he needn't leave work, his mind was made up. "I'll be there as soon as I can."
I hung up the phone and cried. But then I remembered that priest. He had promised to pray that I would get into the trial. If my prayers weren't being answered, maybe his were...I turned to my left, and gazed at the Divine Mercy image hanging on my bedroom wall. If ever there was a time when complete trust was needed, this was it. I repeated the words associated with that image, "Jesus, I trust in You."
Between the time when I hung up the phone with Patrick and the moment he walked into the house, I had dried my tears, squared my shoulders, and decided that I wasn't going to accept a refusal without a better explanation from NIH. I didn't know which doctor had written the note, or anything about the processes in place for evaluating trial candidates, but I had to try something.
I grabbed my copy of the latest scan and loaded the CD onto my computer. I quickly found an image of the node that I thought would qualify me for the trial. Using the viewing software's measuring tools, I displayed the node's height and width on the computer monitor, then captured a screen shot. I composed an email to the nurse requesting that she ask the attending physician to look at the image attached to the email.
"Maybe," I reasoned, "they just stopped looking after rejecting the largest tumor (Jose). I'm sure that Jorge (a different tumor) will make them change their mind." Instead of a crumpled, crying mess, Patrick came home to find his wife in warrior-mode.
Within just a few minutes of sending my request for another review, the nurse wrote back to assure me that she would forward the email to [the attending physician that I requested]. A few hours later she emailed again to let me know that the doctor had submitted my case to the thoracic team for review.
I sincerely thanked the nurse for her help, hung up the phone, and fist-pumped the air. "Hallelujah!", I cried. Even if the answer came back "no" a third time, at least I would have the peace of mind of knowing that I had done everything within my power to get into that trial.
Wednesday, June 3, 2015
Clinical Trial, Try 2
At the end of January, after being told that my lung tumors were "too small" to proceed with the immunotherapy clinical trial, I had another CT scan. The radiologist's report did not go into much detail about the tumors in my lungs. Many general terms were used instead of specific measurements and locations. An "interval development" was noted, but after reviewing prior scans, Patrick determined that this "new" node had been there for quite some time. It is located among the branches of several vessels, and so it was difficult to distinguish on earlier scans (it was smaller then) without knowing exactly where to look. In January it was nearly 2 cm across and unmistakable. In keeping with my naming convention, I dubbed this not-so-new node "Jose", for St. Joseph.
We began measuring the other nodes, particularly the ones that were nearer the outer edges of the lungs where they'd be easier to remove. It appeared that Jorge had grown enough for the purposes of the trial. I eagerly mailed the disk along with the radiology report off to the National Cancer Institute in Bethesda, hopeful that the doctors there would reconsider my case and accept me into the trial.
Nearly a year before this time, I had completed twelve rounds of FOLFOX with 5FU. I was not put on "maintenance chemo" when treatment ended because my scans and labs had pointed to disease stability, if not outright cure. I had enjoyed ten months of chemo-free days, however, with December's news of metastasis, my oncologist was eager that I start some sort of chemotherapy. I was able to hold her off with the fact that the trial I was pursuing required a one-month "wash out" from cytotoxic meds before the trial could begin. The trial depended upon live tumor infiltrating lymphocytes (TIL), which the researchers expected to find in and around the lung tumor. If chemo were given too close to the time of surgery, we risked harvesting a tumor with no useable TIL.
Ever-vigilant, my oncologist ordered an oral chemo drug, xeloda (zeh-LOH-dah), that she wanted me to have on hand so that I could start taking it soon after surgery.
Xeloda is the brand name for capecitabine. My understanding about this drug is that it becomes fluorouracil (5FU) after ingestion. It is not without side-effects, some worse than the infused form. Given the opportunity, I'm sure I would've dragged my feet profoundly over getting the prescription filled, but I didn't have that luxury. Someone from a specialty pharmacy in Maine called me that afternoon to confirm the date on which the shipment of xeloda was to arrive.
Pharmacy: I have a prescription from Dr. [oncologist's name] for you?
Me: OK.
Pharmacy: I need to double-check your insurance benefits. Are you aware that your responsibility for this medication will be $890?
Me: Wha-a-a-t did you say? Is that for a year's supply?
Pharmacy: No ma'am. That is for one fill.
Me: So, medication for two weeks, is what she is saying. I don't think I can agree to this. Is there a generic form available?
Pharmacy: I will call your provider to find out if she will accept a generic. It appears that the box for generic is not checked. Please stay on the line.
Me: Oh, I am hanging on your every word. Trust me.
Pharmacy: Good news! Your provider OK'd the generic. Your responsibility will be $10 per fill.
Me: [faint]
The prescription arrived, all 106 tablets of it (but I think it should've been 105). The instructions read:
TAKE 4 TABLETS BY MOUTH EVERY MORNING AND 3 TABLETS EVERY EVENING 12 HOURS APART, AND ADD ONE TABLET EVERY OTHER DAY.
The bottle of pills would sit in my medicine cabinet at least until I learned whether or not I was accepted into the trial. I wondered how long that would be.
We began measuring the other nodes, particularly the ones that were nearer the outer edges of the lungs where they'd be easier to remove. It appeared that Jorge had grown enough for the purposes of the trial. I eagerly mailed the disk along with the radiology report off to the National Cancer Institute in Bethesda, hopeful that the doctors there would reconsider my case and accept me into the trial.
Nearly a year before this time, I had completed twelve rounds of FOLFOX with 5FU. I was not put on "maintenance chemo" when treatment ended because my scans and labs had pointed to disease stability, if not outright cure. I had enjoyed ten months of chemo-free days, however, with December's news of metastasis, my oncologist was eager that I start some sort of chemotherapy. I was able to hold her off with the fact that the trial I was pursuing required a one-month "wash out" from cytotoxic meds before the trial could begin. The trial depended upon live tumor infiltrating lymphocytes (TIL), which the researchers expected to find in and around the lung tumor. If chemo were given too close to the time of surgery, we risked harvesting a tumor with no useable TIL.
Ever-vigilant, my oncologist ordered an oral chemo drug, xeloda (zeh-LOH-dah), that she wanted me to have on hand so that I could start taking it soon after surgery.
Xeloda is the brand name for capecitabine. My understanding about this drug is that it becomes fluorouracil (5FU) after ingestion. It is not without side-effects, some worse than the infused form. Given the opportunity, I'm sure I would've dragged my feet profoundly over getting the prescription filled, but I didn't have that luxury. Someone from a specialty pharmacy in Maine called me that afternoon to confirm the date on which the shipment of xeloda was to arrive.
Pharmacy: I have a prescription from Dr. [oncologist's name] for you?
Me: OK.
Pharmacy: I need to double-check your insurance benefits. Are you aware that your responsibility for this medication will be $890?
Me: Wha-a-a-t did you say? Is that for a year's supply?
Pharmacy: No ma'am. That is for one fill.
Me: So, medication for two weeks, is what she is saying. I don't think I can agree to this. Is there a generic form available?
Pharmacy: I will call your provider to find out if she will accept a generic. It appears that the box for generic is not checked. Please stay on the line.
Me: Oh, I am hanging on your every word. Trust me.
Pharmacy: Good news! Your provider OK'd the generic. Your responsibility will be $10 per fill.
Me: [faint]
The prescription arrived, all 106 tablets of it (but I think it should've been 105). The instructions read:
TAKE 4 TABLETS BY MOUTH EVERY MORNING AND 3 TABLETS EVERY EVENING 12 HOURS APART, AND ADD ONE TABLET EVERY OTHER DAY.
The bottle of pills would sit in my medicine cabinet at least until I learned whether or not I was accepted into the trial. I wondered how long that would be.
Tuesday, June 2, 2015
Mustard, Anyone?
Subject: Rats
Sent: Dec 17, 2014, at 7:44 PM
Dear Friends,
I so wish I had better news to share, but pathology revealed that the nodules in my lungs are metastasized colon cancer. [My oncologist] read the report to us this afternoon.
...
As you can imagine, it wasn't easy news to hear. I'm thankful that we know for sure what we're dealing with, and that there are promising treatments out there. Please pray that God will make the best path really obvious. I'm a little overwhelmed at the moment.
I'll keep you posted...guess it's still too soon to retire the blast-o-grams.
I'm so thankful for you!
Love,
Celine
I had declined my oncologist's offer of more chemotherapy. I wasn't ready to face cycle after cycle of treatments that made me feel so terribly sick. Statistics on its efficacy for cases like mine did little to convince me of its benefit. I told my oncologist, "I want to try immunotherapy." I had read about another woman's successful treatment, and knew that that is what I wanted to try.
Two days after learning that I was dealing with metastatic disease, I was on the phone with a research nurse at the National Cancer Institute, part of the National Institutes of Health (NIH) in Bethesda, Maryland. It was my forty-ninth birthday, and I was filled with hope.
After our phone call, the nurse at NIH emailed a long list of items that I would need to provide, including: all pathology reports, a CD with the latest two CT/PET/MRI scans, surgeon's notes, chemotherapy records, radiology records, and more. I started making calls to various doctors' offices. Emails flew back and forth. All of the providers needed a signed consent form before they could proceed, so a pattern of sign, scan, and return via email repeated itself over and over. I think it helped that Christmas was only a week away. Clinics and medical offices seemed less-busy than usual. All of my requests were handled quickly and efficiently, with the exception of one. NIH required "biologicals", in this case, slides containing minute samples of the original tumor.
It took nearly a month of miscommunication between three institutions and myself before the tumor slides appeared in the mail room at NIH. The day they arrived there, the research nurse sent them to the lab for analysis. Unfortunately, nearly three weeks later, the results of their tests showed that I was not a candidate for three of the four trials that were presented to me as possible options.
The fourth potential trial (what we refer to as "the TIL trial") required a fresh, resectable tumor. That is, a tumor of sufficient size, located such that removing it would not cause undo harm. Surgery would take place at the NIH in Bethesda, MD. I was notified early in January that one of the doctors had reviewed my September CT and PET scans and reported that "[I] would potentially have a lung lesion that would be resectable for the [fourth] trial." I was excited to get the ball rolling.
My joy at the potential for joining this trial was short-lived, however. Upon further investigation, it became clear that the tumor that the NIH physician wanted to harvest had already been removed during my recent lung surgery. This doctor deemed the remaining tumors "too small" for their purposes--and just like that--I was no longer under consideration for the trial. The research nurse broke the news to me over the phone.
Nurse: Unfortunately, the tumor they wanted is gone. None of the others are being considered.
Me: But there's an almost identical tumor in the other lung.
NIH: The doctor says that it doesn't meet criteria.
Me: But...but...it's practically the same size...nearly a mirror-image!
NIH: What we can do is revisit your case after your next CT. I'm sure the nodes will probably grow by then.
Me: But...but...[internal sobbing] OK, thank you.
I hung up the phone. Lord, what now?
I dug out the disk for September's CT scan, the same scan that the researches had scrutinized and found lacking. I located Casamina, the node they would have used, and measured it. Next, I found the node I had hoped would be their second choice, Jorge, and measured it. The difference between a useable tumor and one that was too small was two millimeters. Two millimeters. I could barely comprehend the fact that my inclusion in the trial was halted by a difference of only two millimeters!
In the dark of night and the quiet of our bedroom, I recounted the whole miserable turn of events to my long-suffering husband. Silent pondering ensued as I lay on my back staring up into the blackness of the room. "What I need," I said aloud, "is faith." Hearing myself say the word "faith" triggered a memory.
Faith the size of a mustard seed could move mountains†. NIH certainly seemed like a mountain in need of moving, to me. Two millimeters was a tiny thing to cause such distress. Surely, if I was meant to be included in the trial, I would be. Then I had a thought that made me smile:
From end to end, a mustard seed itself measures about two millimeters. Hope was restored. The next morning I made an appointment for a new CT scan. I would send it to NIH as soon as it was available.
† Matthew 17:20
Monday, June 1, 2015
The Shoe Drops. Forgiveness Prayer
Patrick accompanied me to the oncology clinic to follow-up on the pathology report from the lung wedge surgery I had done only five days prior. We were taken to an exam room where the doctor sat across from us as she delivered the news. "I'm so sorry," she said, which is all she needed to say. She then began to read from the pathology report itself. I've reproduced a portion of it below:
DIAGNOSIS:
***ALERT***ALERT***ALERT***
A. LUNG, RIGHT MIDDLE LOBE, WEDGE BIOPSY
--- BENIGN LUNG PARENCHYMA WITH SMALL INTRAPARENCHYMAL LYMPH NODE
--- NO MALIGNANCY IDENTIFIED
B. LUNG, RIGHT LOWER LOBE, WEDGE BIOPSY
--- METASTATIC ADENOCARCINOMA CONSISTENT WITH COLORECTAL PRIMARY, SEE COMMENT
--- MAXIMUM LINEAR DIMENSION OF CARCINOMA: 1.5 CM
--- INKED STAPLED SURGICAL MARGIN IS POSITIVE FOR ADENOCARCINOMA
COMMENT:
The sections reveal a lung parenchyma infiltrated by adenocarcinoma.
Neoplastic cell are positive for CK20 and CDX2 while negative for CK7 and TTF-1. Overall, the clinical history, morphologic features and immunohistochemical findings are consistent with metastatic adenocarcinoma from colorectal primary.
My birthday would be two days later. Christmas was less than a week away. What a rotten time to get news like this. I had a burning question after reading the report. It stated that "positive margins" remained after the wedge was taken. This meant that cancer cells near where the node had been cut off were still present. My question was: Why? Why when current theories of cancer promote the idea that a single cancer cell can eventually lead to death, why wasn't care taken to obtain clean margins? When the surgeon stated that the intent of the surgery was "not therapeutic" (see this post), I never imagined that the procedure itself, by its very nature could be instrumental in spreading the disease it sought to diagnose. That was naive on my part. I had assumed that a large enough wedge could be taken and would be taken such that the sought-for nodule would be completely removed, and all trace of nearby cancer cells with it. Why didn't the surgeon check for clean margins before closing? This question haunted me for weeks. I became angry.
If physical harm had been done to me, it was too late to mitigate, but it wasn't too late to repair the spiritual damage that I could do to myself by despairing or becoming bitter. I needed to forgive the surgeon. Some weeks later, with the help of a holy priest, and the Sacrament of Confession, I started the process. The priest explained that though I might not be ready to offer my own forgiveness, I could ask God to do the forgiving in my place. He shared with me this most-helpful prayer, carefully pronouncing each word with reverence, "Lord, forgive those bums for what they did to me." (Emphasis his.) The priest encouraged me to repeat this prayer multiple times a day, whenever I thought about what happened. "After enough time," he promised, "you'll forget what you're asking to be forgiven."
Since the surgery, I've been informed that I received the standard of care. Because the intent of a biopsy is never curative, maintaining clear margins is not part of the equation. The situation makes me wonder if I will ever know the right questions to ask before a procedure. Meanwhile, I haven't yet forgotten what I'm asking to be forgiven. Until then I keep repeating:
Lord, forgive those bums for what they did to me.
DIAGNOSIS:
***ALERT***ALERT***ALERT***
A. LUNG, RIGHT MIDDLE LOBE, WEDGE BIOPSY
--- BENIGN LUNG PARENCHYMA WITH SMALL INTRAPARENCHYMAL LYMPH NODE
--- NO MALIGNANCY IDENTIFIED
B. LUNG, RIGHT LOWER LOBE, WEDGE BIOPSY
--- METASTATIC ADENOCARCINOMA CONSISTENT WITH COLORECTAL PRIMARY, SEE COMMENT
--- MAXIMUM LINEAR DIMENSION OF CARCINOMA: 1.5 CM
--- INKED STAPLED SURGICAL MARGIN IS POSITIVE FOR ADENOCARCINOMA
COMMENT:
The sections reveal a lung parenchyma infiltrated by adenocarcinoma.
Neoplastic cell are positive for CK20 and CDX2 while negative for CK7 and TTF-1. Overall, the clinical history, morphologic features and immunohistochemical findings are consistent with metastatic adenocarcinoma from colorectal primary.
My birthday would be two days later. Christmas was less than a week away. What a rotten time to get news like this. I had a burning question after reading the report. It stated that "positive margins" remained after the wedge was taken. This meant that cancer cells near where the node had been cut off were still present. My question was: Why? Why when current theories of cancer promote the idea that a single cancer cell can eventually lead to death, why wasn't care taken to obtain clean margins? When the surgeon stated that the intent of the surgery was "not therapeutic" (see this post), I never imagined that the procedure itself, by its very nature could be instrumental in spreading the disease it sought to diagnose. That was naive on my part. I had assumed that a large enough wedge could be taken and would be taken such that the sought-for nodule would be completely removed, and all trace of nearby cancer cells with it. Why didn't the surgeon check for clean margins before closing? This question haunted me for weeks. I became angry.
If physical harm had been done to me, it was too late to mitigate, but it wasn't too late to repair the spiritual damage that I could do to myself by despairing or becoming bitter. I needed to forgive the surgeon. Some weeks later, with the help of a holy priest, and the Sacrament of Confession, I started the process. The priest explained that though I might not be ready to offer my own forgiveness, I could ask God to do the forgiving in my place. He shared with me this most-helpful prayer, carefully pronouncing each word with reverence, "Lord, forgive those bums for what they did to me." (Emphasis his.) The priest encouraged me to repeat this prayer multiple times a day, whenever I thought about what happened. "After enough time," he promised, "you'll forget what you're asking to be forgiven."
Since the surgery, I've been informed that I received the standard of care. Because the intent of a biopsy is never curative, maintaining clear margins is not part of the equation. The situation makes me wonder if I will ever know the right questions to ask before a procedure. Meanwhile, I haven't yet forgotten what I'm asking to be forgiven. Until then I keep repeating:
Lord, forgive those bums for what they did to me.
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