Each day the morning nurse writes on my dry erase board the date, and the number of days until "cell day", which is scheduled for next Wednesday.
Days -7 and -6 were the worst to date. Cyclophosphamide went in at 8:00 PM on Wednesday. Immediately my sinuses felt like I had jumped into a chlorinated pool and had water up my nose. I was amazed at the infusion pump--it had three pumps connected to it, and even more bags hanging over it. Pumps A, B, and C controlled saline, chemo, and something called "mesna", which was meant to protect the bladder from the toxic cyclophosphamide.
Because cyclophosphamide can damage the bladder, I.V. fluids were pushed for 12 hours prior to the infusion, then continued for the next 48 hours after the infusion started. This meant regular trips to the bathroom. No two-hour space of time could go by without a trip to the restroom. If I had been sleeping, a nurse would wake me. I had a goal of 250 ml of output to produce; if I didn't reach the 250 ml goal, they'd push even more I.V. fluids.
The nurses never had to wake me to use the restroom; my bladder did that for me. My initial surgery, back in September of 2013 had rendered my bladder 20% smaller (the primary tumor had attached itself to the top of the bladder), and so my trips to the restroom happened every 90 minutes or so. Production wasn't an issue, either. I was regularly exceeding the goal amount by double, or more...for two days straight.
The reason for the renogram I had earlier was now abundantly clear. 48 hours of bathroom visits every ninety minutes comes to 32 trips! There was no sleeping. I was a zombie.
The second day of infusion was more difficult than the first. Nausea set in and made eating impossible. I threw up three times during the second night of infusion. I don't remember much about this time because I was so sleep-deprived. I wasn't in any pain. I remember that the gunk I vomited looked just as I had imagined toxic waste to look.
On Friday at 8:00 PM they considered me to be cyclophosphamide-free, and stopped the extra infusions. No more visiting the restroom every ninety minutes--sweet relief. A new chemo drug would be infused over the next five days. This one takes only 20 minutes to infuse, once per day. Its main side effect for me seems to be unrelenting nausea. My recent days have included little more than shower, sleep, try (and fail) to eat, vomit, sleep, etc. etc. I receive anti-nausea meds whenever I request them. I am sleepy but unable to sleep. Nausea sucks the life out of me.
The exit point of the new port, called a Hickman catheter, has to be covered at all times. Normally they'd use a transparent dressing that can last up to a week before needing to be replaced, but I'm too sensitive to the adhesive. Instead, I've got an opaque dressing that must be changed daily. When the nurses remove it, it's the best part of the day. I am so, so itchy where the dressing is. It drives me to distraction!
I haven't left my room for the past two days. I am too sleepy, and too nauseated. A priest visits once each day to offer Holy Communion. I have been refusing since the nausea set in. He offers a blessing instead.
Dr. Rosenberg and his accompanying entourage came into my room during one of the past few days (can't remember which). He said that they're all very excited about my cells. "We'll learn a lot from your case, and it will likely do you some good, too!" Apparently I'm the first patient on the trial whose TIL reacted against a KRAS mutation. This gene is known to be involved in many G.I. cancers, and is considered a "driver mutation", which I think means that it is responsible for further mutations. I am exceedingly hopeful that great good will come of this.
I am drawing on my friends' prayers heavily. My own prayers are sporadic and confused. I place myself at the Mercy of Christ crucified and unite my sufferings with His. Catholics believe in Redemptive Suffering, and this is what I aspire to while I am here.
Each morning, I put an "x" on the calendar and know that I'm one step closer to being home again, yet I am thankful to have this opportunity for renewed health.
I remind myself constantly that I chose this. I fought frustration, rejection, and others' pessimism to get to this place--this paragon of cutting-edge medical research. Coming here and undergoing this treatment was what I asked for (what I prayed fervently for!), and my prayers were answered in the affirmative. I am here. My confinement and discomfort is temporary, and necessary. I am being well-cared for...but it is not easy. I try to not complain, even to myself.
Sunday, June 28, 2015
Thursday, June 25, 2015
Day "Minus 8"
Surgery to place a Hickman catheter happened eight days before the trial began. Once again I received the instruction to not eat or drink after midnight before the procedure. What was different this time, is that the surgery time was not scheduled. It would happen whenever the on-call surgeon was ready for me. Thankfully, an escort appeared at around 9:00 AM to wheel me to the operating room. Patrick accompanied me.
We were deposited into a tiny, freezing cold waiting area where two other people sat. I was given a warm blanket, then got up from my wheelchair to allow passage of a patient-bearing gurney. I remained standing and tried sharing the warmth of the blanket with Patrick. A nurse spotted us and loudy proclaimed that it was time for a "group hug". She came over and put her arms around us both, which made me laugh. (Later in the day, she would spot Patrick on the elevator and wonder why she knew his name.)
The surgeon came out and introduced himself, then brought us to a tiny office area where he described the procedure and went over some paperwork. I signed the consent, then was ushered into the operating room by a nurse who would be with me the entire time.
I have been in several operating rooms to date, but normally I am asleep before I reach the doors. This time, I was fully awake. It was not the spacious, bright white space I'd seen on television. While certainly clean, the predominant color was steel gray. Overhead there was a system of rails criss-crossing the ceiling. The table itself was extremely narrow, and the tiny room was crammed full of equipment that I didn't recognize. A surgical assistant introduced himself and explained that he'd be "scrubbing the area"; this meant that he'd be cleaning the skin around the surgical site. I discovered later that the area he scrubbed was temporarily dyed blue. Whenever he was near, I could hear his humming of "Zippety Do Dah". It was a bit surreal.
"He must be content in his work," I thought, "that is probably a good thing."
The nurse brought the sterile package containing the port to where I could see it. She pointed out the two lumens, one capped red, and the other blue. They would be the parts that dangled outside my body. They were attached to a long catheter that would thread under my skin to an insertion point where they would snake down into a large vein that leads to my heart.
Blue sterile sheets were draped over me, and a hoop was placed over my head onto which was placed another blue sheet--someone opened it so that I could see out. I lay on the table with my head facing left. Next some medication was added to the I.V. that I had kept from the previous day. I would receive an anti-nausea medication as well. I would be awake for the entire procedure but wouldn't remember anything.
Thanks, I think, in part at least to the humming surgical assistant, my brain was alert enough to remember most of what occurred. I was aware that I was being sliced open at the neck, and I can even relate that it hurt. My mind though, didn't recoil, and didn't conjur up images of what it might look like. I was just chill, oh hey that kind of hurts. Guess it's supposed to though. It'll stop soon. I remember the doc asking for a measurement for something; when he heard the requested information he replied, "Close enough, this is government work." Funny, doc. We used to make jokes like that in college.
When it was over there was some discussion about how to dress the wounds. Mepilex bandages were applied (low adhesive). These need to be replaced daily. Ideally, a transparent dressing would be used that could stay in place for seven days. That one though, makes me want to claw out the port with my fingernails. The adhesive burns and itches. I haven't heard the last of the bandaging challenge yet. The port itself is working fine, but the need to keep it covered is crucial.
Sorry for my diminished writing ability. I'll edit later. As I'll explain in the next post, there has been very little sleep for me over the past 24 hours.
We were deposited into a tiny, freezing cold waiting area where two other people sat. I was given a warm blanket, then got up from my wheelchair to allow passage of a patient-bearing gurney. I remained standing and tried sharing the warmth of the blanket with Patrick. A nurse spotted us and loudy proclaimed that it was time for a "group hug". She came over and put her arms around us both, which made me laugh. (Later in the day, she would spot Patrick on the elevator and wonder why she knew his name.)
The surgeon came out and introduced himself, then brought us to a tiny office area where he described the procedure and went over some paperwork. I signed the consent, then was ushered into the operating room by a nurse who would be with me the entire time.
I have been in several operating rooms to date, but normally I am asleep before I reach the doors. This time, I was fully awake. It was not the spacious, bright white space I'd seen on television. While certainly clean, the predominant color was steel gray. Overhead there was a system of rails criss-crossing the ceiling. The table itself was extremely narrow, and the tiny room was crammed full of equipment that I didn't recognize. A surgical assistant introduced himself and explained that he'd be "scrubbing the area"; this meant that he'd be cleaning the skin around the surgical site. I discovered later that the area he scrubbed was temporarily dyed blue. Whenever he was near, I could hear his humming of "Zippety Do Dah". It was a bit surreal.
"He must be content in his work," I thought, "that is probably a good thing."
The nurse brought the sterile package containing the port to where I could see it. She pointed out the two lumens, one capped red, and the other blue. They would be the parts that dangled outside my body. They were attached to a long catheter that would thread under my skin to an insertion point where they would snake down into a large vein that leads to my heart.
Blue sterile sheets were draped over me, and a hoop was placed over my head onto which was placed another blue sheet--someone opened it so that I could see out. I lay on the table with my head facing left. Next some medication was added to the I.V. that I had kept from the previous day. I would receive an anti-nausea medication as well. I would be awake for the entire procedure but wouldn't remember anything.
Thanks, I think, in part at least to the humming surgical assistant, my brain was alert enough to remember most of what occurred. I was aware that I was being sliced open at the neck, and I can even relate that it hurt. My mind though, didn't recoil, and didn't conjur up images of what it might look like. I was just chill, oh hey that kind of hurts. Guess it's supposed to though. It'll stop soon. I remember the doc asking for a measurement for something; when he heard the requested information he replied, "Close enough, this is government work." Funny, doc. We used to make jokes like that in college.
When it was over there was some discussion about how to dress the wounds. Mepilex bandages were applied (low adhesive). These need to be replaced daily. Ideally, a transparent dressing would be used that could stay in place for seven days. That one though, makes me want to claw out the port with my fingernails. The adhesive burns and itches. I haven't heard the last of the bandaging challenge yet. The port itself is working fine, but the need to keep it covered is crucial.
Sorry for my diminished writing ability. I'll edit later. As I'll explain in the next post, there has been very little sleep for me over the past 24 hours.
Wednesday, June 24, 2015
Day "Minus Nine"
On the evening of Father's Day, Patrick and I caught the shuttle from BWI to the hospital with the help of a legion of angels, I'm convinced. The information we were given about the shuttle pick-up location is about six years out-dated, according to the shuttle driver. His was the last shuttle for the night, so we were thankful that he made the extra stop.
Late that night "my" research fellow came in--he was the on-call doc for the weekend. He updated my pre-scan instructions from "nothing to eat or drink 4 hours prior to scans" to "nothing to eat or drink after midnight." No matter. My scan was scheduled for 6:00 something in the morning.
At NIH the oral contrast drink tastes like water that has been stored in a chemical-leeching container, which is to say that it tastes infinitely better than the thick, sickening "berry" flavored contrast that usually awaits me before a scan. I drank half of the liter bottle of contrast in my room, and brought the other half with me to the radiology department. Once there, I was stuck in the left arm to accommodate I.V. contrast, and was instructed to finish half of what was left in the bottle of oral contrast. The CT was uneventful and easy peasy.
Next up was an MRI. I had thought it would be a twenty-minute affair like the two previous ones I've had, but when I spoke to the tech, she described what would end up being almost a two hour procedure. I reconsidered my earlier denial of her inquiry about my need for the restroom.
First up would be a scan of my brain without contrast. The familiar head contraption was snapped over my face, and some other apparatus was strapped across my abdomen. I was given a pneumatic bulb to squeeze if I should need to stop the test. Inside the machine, a fan blew air around me to help ease any feelings of claustrophobia. As usual, I was to lie still for the duration of the scan. This would take fifteen minutes, she said. "Just enough time for a quick rosary," I thought. I hadn't considered how confusing all the noise, noise, noise (!) would be once the test began, however. I only made it through the third mystery (of five) before that part of the test was over. Who can pray with all of that racket?
Out came the narrow-narrow bed with me on it. I still wasn't allowed to move, but the tech adjusted "the coils"...whatever that meant. In I went again, still with the cage over my face. I resumed the rosary where I had left off, but couldn't remember the fourth joyful mystery! "Rats...let's see, sorrowful is Carrying of the Cross...Glorious is the Assumption into Heaven...Luminous is the Transfiguration...what is the fourth joyful mystery?!?!... all the while the machine is screaming its unnerving blasts of sound, first banging, then humming, then what sounds like gunfire...fourth mystery...fourth mystery...Jesus...in the temple? No that's the fifth...ARGH...the noise! Eventually, I remembered! (The Presentation! Woo!) and continued with many stops and starts due to all the noise inside that brain-scrambling machine.
One of the closing prayers of the rosary is a relatively short one to Mary, asking that she show us the way to Jesus. I've prayed this prayer hundreds of times, but never during a mind-jarring, memory-stealing MRI. It took me almost all of the remaining time to remember each phrase in the correct order. When I finally got it right, I just repeated the prayer over and over despite the chaos of sound blasting into my ears, and the shaking of the machine. I was able to concentrate on the prayer, and not on the fact that I was trapped, which I'm sure kept me from panicking.
All at once everything went still and silent. I heard the tech announce that the test was over and shortly after that she came and released me from the cage and coils and things. I dizzily sat up and wondered whose idea it was to schedule a brain MRI back-to-back with an abdominal MRI. Glancing at the clock, I discovered that an hour and fifty minutes had passed. I met Patrick in the waiting room and we found our way back to my room where I collapsed onto the bed.
All that lying around inside a scanner can really wear a person out.
Wednesday, June 17, 2015
Holding Pattern
My story has now reached real-time. In just a few days, I'll be traveling to Bethesda, MD, this time to receive immunotherapy. Sixty-one genetic mutations were found in the tumor material. Their plan, which my fellow said is still being evaluated, is to use TIL that reacted against a mutation of the KRAS gene.
My fellow explained that many gastro-intestinal cancer patients have a KRAS mutation, and it is well-studied and known to be a "driver mutation" in G.I. cancers. He mentioned that a mutation is considered a "driver" when it is found early and frequently. How this impacts my chances for success with cell treatment was not discussed, but I'll be asking lots of questions when next we meet.
I will be in the hospital for 3 to 4 weeks. I'm expecting the first weeks to be the most physically challenging as my immune system is washed out via "conditioning" chemotherapy (cyclophosphomide for two days, then fludarabine for five days). I have been warned that sleep deprivation is guaranteed for the first two days.
I am hoping that my history of waking to feed babies at all hours of the night will have been good training for this part of the trial.
Babies...how am I going to survive leaving them? I have five "babies". Two are teens, one is on the verge of teen-dom, and the youngest are 6 and 8. One of my little ones has been coming to me several times each day on the verge of tears to say he'll miss me when I'm in the hospital. I hug him and assure him that "It's O.K., I know. I will miss you just as much, but I'll be back...I'll be back, and I will still love you even though we're apart."
My little boy doesn't know that my heart breaks every time I think about what it will be like to wake up without him rushing into my room for the first hug of the day.
These kids...these treasures... I hear their voices so clearly in my head. Each one. ...the way they laugh...the jokes, the questions, the prayers, and conflicts of normal family life. I see their faces.
My kids took a photo of themselves as a gift to me for Mother's Day. In the picture, they are standing in age-order outdoors against the brick wall of the house. I will bring this photo with me to the hospital; when I look at it, I'll think of the stories they told me as they laughed about what it was like to organize this one shot. ...how one daughter insisted that the others don suitable clothes; how the rest were annoyed at being interrupted from what they had been doing previously. I'll remember my teen describing how she struggled to get the tripod to cooperate--she has a flair for the dramatic! I'll wonder about what promises they made to get the youngest to be still and smile for the camera..."for Mom". For me.
The only thing that compels me to leave them and their Dad, my better half, for so many days in the hospital is the hope that this treatment will allow me to spend more time with them in the years to come. I hope it works. I hope it works for me, and for many others like me.
Thank you for reading this part of my story--my "riot".
Wish me luck! I'll be back, God willing.
My fellow explained that many gastro-intestinal cancer patients have a KRAS mutation, and it is well-studied and known to be a "driver mutation" in G.I. cancers. He mentioned that a mutation is considered a "driver" when it is found early and frequently. How this impacts my chances for success with cell treatment was not discussed, but I'll be asking lots of questions when next we meet.
I will be in the hospital for 3 to 4 weeks. I'm expecting the first weeks to be the most physically challenging as my immune system is washed out via "conditioning" chemotherapy (cyclophosphomide for two days, then fludarabine for five days). I have been warned that sleep deprivation is guaranteed for the first two days.
I am hoping that my history of waking to feed babies at all hours of the night will have been good training for this part of the trial.
Babies...how am I going to survive leaving them? I have five "babies". Two are teens, one is on the verge of teen-dom, and the youngest are 6 and 8. One of my little ones has been coming to me several times each day on the verge of tears to say he'll miss me when I'm in the hospital. I hug him and assure him that "It's O.K., I know. I will miss you just as much, but I'll be back...I'll be back, and I will still love you even though we're apart."
My little boy doesn't know that my heart breaks every time I think about what it will be like to wake up without him rushing into my room for the first hug of the day.
These kids...these treasures... I hear their voices so clearly in my head. Each one. ...the way they laugh...the jokes, the questions, the prayers, and conflicts of normal family life. I see their faces.
My kids took a photo of themselves as a gift to me for Mother's Day. In the picture, they are standing in age-order outdoors against the brick wall of the house. I will bring this photo with me to the hospital; when I look at it, I'll think of the stories they told me as they laughed about what it was like to organize this one shot. ...how one daughter insisted that the others don suitable clothes; how the rest were annoyed at being interrupted from what they had been doing previously. I'll remember my teen describing how she struggled to get the tripod to cooperate--she has a flair for the dramatic! I'll wonder about what promises they made to get the youngest to be still and smile for the camera..."for Mom". For me.
The only thing that compels me to leave them and their Dad, my better half, for so many days in the hospital is the hope that this treatment will allow me to spend more time with them in the years to come. I hope it works. I hope it works for me, and for many others like me.
Thank you for reading this part of my story--my "riot".
Wish me luck! I'll be back, God willing.
Tuesday, June 16, 2015
Science-y Things
I was sent home two days after the lung wedge surgery to recover. Ten days after that, I received an email from my immunotherapy fellow at NIH. He had good news: my tumor infiltrating lymphocytes (TIL) were growing. He mentioned that they would continue to multiply over the next several weeks. When they reached sufficient numbers, they'd be cryogenically preserved until they were needed.
Poor, chilly lymphocytes.
DNA from the tumor had been sequenced. Healthy (non-mutated) DNA from my blood was also sequenced. Next, the two sets of DNA would be compared. Differences between them would indicate the mutations that allowed the cancer to grow. One of the attending doctors mentioned that this sequencing-and-comparing process involved terabytes (one million million bytes) of information, and would take some time to work out.
What the clinical trial (NCT01174121) seeks to achieve is to focus the body's immune system to attack precisely those mutations present in chemo-resistant tumors. It is believed that such defenses are already present in our bodies, but perhaps in numbers too small to effectively eradicate the cancer. If researchers could identify relevant TIL; if their numbers could be increased, and if the TIL could survive the transition from lab to human circulation, then maybe they'd survive and thrive long enough to conquer every single cancer cell in the "tumor-bearing host" (that would be me, the patient).
Scientist outside of NIH would build a set of "tandem mini-genes" (TMGs) using my tumor's genetic information. The TMGs consist of mutation-containing bits of DNA strung together. Sixty-one mutations were found in my tumor, and so sixty-one mini-genes were created. In order to test more than one mutation at a time, the Scientist-slash-Wizards strung together multiple mini-genes in tandem. After the researchers constructed them, they would present these TMGs to the TIL. Any reactivity (TIL attacking) would be counted as a positive result. If reactivity was proven in the lab, the trial could proceed.
I was told to expect a two-to-three month wait while mutations were identified and TMGs were built. After that step, if reactivity was shown, then the reacting TIL would be "expanded" (multiplied). If things moved forward to that point, my contact at NIH would give me a call to invite me back to NIH for "conditioning" (chemo to wipe out my existing immune system) and cell treatment (infusion into me of the specific TIL that attacked the cancer cells in the lab).
I settled in for the two-month wait, hoping and praying throughout every day that the trial would advance toward treatment. Beyond that, I prayed that this experimental treatment would transform my diagnosis of terminal illness into a reason to praise God for the miracle of science.
I always prayed for the doctors, scientists, and other people who were working on my case. I prayed that they would do their best work. Later, I prayed for their holiness. I believe that all people are called to be holy. Holiness, I reasoned, would promote cooperation of all those working on my case. It would facilitate Divine grace.
Poor, chilly lymphocytes.
DNA from the tumor had been sequenced. Healthy (non-mutated) DNA from my blood was also sequenced. Next, the two sets of DNA would be compared. Differences between them would indicate the mutations that allowed the cancer to grow. One of the attending doctors mentioned that this sequencing-and-comparing process involved terabytes (one million million bytes) of information, and would take some time to work out.
What the clinical trial (NCT01174121) seeks to achieve is to focus the body's immune system to attack precisely those mutations present in chemo-resistant tumors. It is believed that such defenses are already present in our bodies, but perhaps in numbers too small to effectively eradicate the cancer. If researchers could identify relevant TIL; if their numbers could be increased, and if the TIL could survive the transition from lab to human circulation, then maybe they'd survive and thrive long enough to conquer every single cancer cell in the "tumor-bearing host" (that would be me, the patient).
Scientist outside of NIH would build a set of "tandem mini-genes" (TMGs) using my tumor's genetic information. The TMGs consist of mutation-containing bits of DNA strung together. Sixty-one mutations were found in my tumor, and so sixty-one mini-genes were created. In order to test more than one mutation at a time, the Scientist-slash-Wizards strung together multiple mini-genes in tandem. After the researchers constructed them, they would present these TMGs to the TIL. Any reactivity (TIL attacking) would be counted as a positive result. If reactivity was proven in the lab, the trial could proceed.
I was told to expect a two-to-three month wait while mutations were identified and TMGs were built. After that step, if reactivity was shown, then the reacting TIL would be "expanded" (multiplied). If things moved forward to that point, my contact at NIH would give me a call to invite me back to NIH for "conditioning" (chemo to wipe out my existing immune system) and cell treatment (infusion into me of the specific TIL that attacked the cancer cells in the lab).
I settled in for the two-month wait, hoping and praying throughout every day that the trial would advance toward treatment. Beyond that, I prayed that this experimental treatment would transform my diagnosis of terminal illness into a reason to praise God for the miracle of science.
I always prayed for the doctors, scientists, and other people who were working on my case. I prayed that they would do their best work. Later, I prayed for their holiness. I believe that all people are called to be holy. Holiness, I reasoned, would promote cooperation of all those working on my case. It would facilitate Divine grace.
Monday, June 15, 2015
Good-Bye, Jorge and Javier
In order to generate the "cell therapy" that I hoped to receive as a participant in the TIL clinical trial, the researchers needed "tumor material". This meant another lung wedge surgery for me (they can use tumors in other locations for this trial, as long as they meet the size requirement and are relatively easy to remove). I had the same procedure in December on my right lung; this time a nodule in my left lung would be the target. (This nodule was known to Patrick and me as "Jorge"--the same one that escaped the interventionist radiologist's needle some five month's earlier: Part 1 of that ordeal and Part 2.)
Surgery was scheduled for "first of the day." I transferred to a gurney early in the morning of April 1, and was whisked through the halls of NIH to pre-op. Once there, an I.V. was placed in the back of my right hand (though I still had Vein Lady's access on the back of my left hand), and many, many questions were asked and answered. My hair was tucked up under a disposable bouffant cap. The surgeon stopped by to pen his initials onto my left upper chest, right over my port (ow!). I was asked for maybe the third time to describe the surgery that was about to happen. I'm sure that I must've bid Patrick good-bye, but I can't remember it.
What I do remember is waking up in my hospital room with a tube coming out of my left side. "You again," I thought to myself. The I.V. in my right hand was now clamped off, and the one in my left hand was connected to a hanging bag of...something. A nurse explained that I was receiving morphine, and that I could boost the dose with the push of button. I was free to move about as long as I brought the I.V. pole along with me. (There was no moving about.) All I did was sleep and push the button. In fact, they were concerned that something stronger than morphine would be warranted, since I was apparently pushing the button quite a lot. I admit that I was hoping to avoid the excruciating pain I remembered from last time.
Dilaudid replaced morphine and the hours inched by hazily. I ordered only a popsicle for dinner. As evening approached nausea set in. It was not pretty. An antiemetic was added to the I.V.—too late. Soon after that unsettling event, I asked to be taken off the narcotics, hoping that that would relieve the unrelenting nausea. I switched to Tylenol for pain control. Doctors and nurses came and went, checking the vacuum-chamber attached to the chest tube, listening to my breathing, taking my blood pressure...I slept off and on through the night.
In the late morning the surgeon's assistant arrived at the foot of my bed and explained that he would remove the tube "very soon." He first peeled away layers of tape and gauze from my left side, then pressed a stethoscope to my side to listen to my lungs. He asked me to cough, inspected the vacuum-box, and then told me that he was going to "pull the tube." "As I'm doing this," he explained, "I want you to hum loudly." He demonstrated this by humming loudly himself, which I then mimicked. I imagined that this was some sort of distraction ploy, but he maintained that the vibration would aid in the tube's removal. I thought that since I had undergone a tube extraction just a short while ago, I knew what to expect. I was wrong! This doc had a different technique entirely. Whereas the resident at the other hospital ever-so-slowly-and-gingerly eked the tube out one nauseating centimeter at a time, this new doc merely issued the commanded, "Hum!" and not one-second of "humming" later, he had yanked that tube out of me with such force that I barely grasped what was going on. I had no time to think about it--it was finished almost as soon as it started.
Me: Is it out?!
Doc: Yep. That's it.
Me [to Patrick]: Did you see that?! That was SO COOL!
I prattled on stupidly about how quick and very different this procedure had gone compared to what it had been like the previous time. I was elated! The nurses were amused. "Nobody ever says, 'That was cool'." She smiled as she high-fived those around her.
***
Later in the day Patrick and I tooled around the hospital--him pushing me in a wheelchair. We each would need security badges for our eventual return to the hospital, and (!) there were m&ms to be located.† I felt great and suffered no unexpected set-backs.
Toward late afternoon an assortment of doctors gathered at the foot of my bed. The attending physician explained that my tumors (unbeknownst to me they had taken two, Javier in addition to Jorge) were at that moment in the lab just a short distance from my room. Scientists had sliced them up, and would be trying to "grow TIL" from them. Whether the TIL would cooperate was to be determined.
The path to TIL treatment is strewn with one benchmark after another. If just one hurdle gets knocked down along the way, the patient may be dropped from the trial. Thankfully, when my thoracic surgeon came to check on me the next morning, he gave us the encouraging news that the TIL were already growing! He said that he had personally gone to the lab to find out, and had seen them for himself.
What great news!
I was released from the hospital on the second day past surgery, confident that the events in the lab were unfolding just as they were meant to. It would be several days before my contact at NIH, an immunotherapy fellow, would have any information for me. So began another period of waiting.
† m&ms can be purchased in the Concessions Shop located in the basement of the Clinical Center (Blg. 10). My new favorite, Milky Way Dark, are sold there too!
Surgery was scheduled for "first of the day." I transferred to a gurney early in the morning of April 1, and was whisked through the halls of NIH to pre-op. Once there, an I.V. was placed in the back of my right hand (though I still had Vein Lady's access on the back of my left hand), and many, many questions were asked and answered. My hair was tucked up under a disposable bouffant cap. The surgeon stopped by to pen his initials onto my left upper chest, right over my port (ow!). I was asked for maybe the third time to describe the surgery that was about to happen. I'm sure that I must've bid Patrick good-bye, but I can't remember it.
What I do remember is waking up in my hospital room with a tube coming out of my left side. "You again," I thought to myself. The I.V. in my right hand was now clamped off, and the one in my left hand was connected to a hanging bag of...something. A nurse explained that I was receiving morphine, and that I could boost the dose with the push of button. I was free to move about as long as I brought the I.V. pole along with me. (There was no moving about.) All I did was sleep and push the button. In fact, they were concerned that something stronger than morphine would be warranted, since I was apparently pushing the button quite a lot. I admit that I was hoping to avoid the excruciating pain I remembered from last time.
Dilaudid replaced morphine and the hours inched by hazily. I ordered only a popsicle for dinner. As evening approached nausea set in. It was not pretty. An antiemetic was added to the I.V.—too late. Soon after that unsettling event, I asked to be taken off the narcotics, hoping that that would relieve the unrelenting nausea. I switched to Tylenol for pain control. Doctors and nurses came and went, checking the vacuum-chamber attached to the chest tube, listening to my breathing, taking my blood pressure...I slept off and on through the night.
In the late morning the surgeon's assistant arrived at the foot of my bed and explained that he would remove the tube "very soon." He first peeled away layers of tape and gauze from my left side, then pressed a stethoscope to my side to listen to my lungs. He asked me to cough, inspected the vacuum-box, and then told me that he was going to "pull the tube." "As I'm doing this," he explained, "I want you to hum loudly." He demonstrated this by humming loudly himself, which I then mimicked. I imagined that this was some sort of distraction ploy, but he maintained that the vibration would aid in the tube's removal. I thought that since I had undergone a tube extraction just a short while ago, I knew what to expect. I was wrong! This doc had a different technique entirely. Whereas the resident at the other hospital ever-so-slowly-and-gingerly eked the tube out one nauseating centimeter at a time, this new doc merely issued the commanded, "Hum!" and not one-second of "humming" later, he had yanked that tube out of me with such force that I barely grasped what was going on. I had no time to think about it--it was finished almost as soon as it started.
Me: Is it out?!
Doc: Yep. That's it.
Me [to Patrick]: Did you see that?! That was SO COOL!
I prattled on stupidly about how quick and very different this procedure had gone compared to what it had been like the previous time. I was elated! The nurses were amused. "Nobody ever says, 'That was cool'." She smiled as she high-fived those around her.
***
Later in the day Patrick and I tooled around the hospital--him pushing me in a wheelchair. We each would need security badges for our eventual return to the hospital, and (!) there were m&ms to be located.† I felt great and suffered no unexpected set-backs.
Toward late afternoon an assortment of doctors gathered at the foot of my bed. The attending physician explained that my tumors (unbeknownst to me they had taken two, Javier in addition to Jorge) were at that moment in the lab just a short distance from my room. Scientists had sliced them up, and would be trying to "grow TIL" from them. Whether the TIL would cooperate was to be determined.
The path to TIL treatment is strewn with one benchmark after another. If just one hurdle gets knocked down along the way, the patient may be dropped from the trial. Thankfully, when my thoracic surgeon came to check on me the next morning, he gave us the encouraging news that the TIL were already growing! He said that he had personally gone to the lab to find out, and had seen them for himself.
What great news!
I was released from the hospital on the second day past surgery, confident that the events in the lab were unfolding just as they were meant to. It would be several days before my contact at NIH, an immunotherapy fellow, would have any information for me. So began another period of waiting.
† m&ms can be purchased in the Concessions Shop located in the basement of the Clinical Center (Blg. 10). My new favorite, Milky Way Dark, are sold there too!
Friday, June 12, 2015
Locked Out
The night before my surgery, around 11:00 PM, my roommate's snoring became impossible to ignore. I didn't want to disturb her by turning on my reading light, so I gathered my book and wandered down the hall, hoping to find a spot where I could sit and read until I got drowsy. I found a little room just outside the twin security doors that isolate the patient ward from the rest of the third floor.
Everything was blissfully quiet. I read until 3:30 AM. Feeling like maybe sleep could happen even in the midst of the log-sawing taking place in my room, I closed my book and walked the couple of steps to the doors of 3NW. I waved my hand in front of the sensor that normally signals the door to open, but they remained closed! Uh oh. I waved my hand again at the magic door-opening-square on the wall. Magic Limit Exceeded. You lose! It wasn't working; the doors remained firmly shut. I pushed on the doors manually. Nope. They were truly locked. Am I gonna be sleeping in a chair tonight? I had my cell phone in my robe pocket, but I didn't know who to call. I didn't have phone numbers for anyone at the hospital. What to do?
Breathe.
Surely people come through these doors after hours. There's probably a sign if I just…oh look! A sign. Next to the door, behind a portable stand and fixed to the wall was a sign that read, "After hours press call button." Underneath the sign were three buttons: a white one, a red one, and another white one. None of the buttons were labeled. Hmmm…I pushed the first button. Nothing. I pushed the second (red one). Nothing. Then I tried the door again, and that time someone heard me! A nurse came to the door and let me in. She didn't ask who I was—it was clear from my plastic ID bracelet, frumpy hospital gown and robe that I was a patient. She explained that I could "just hit the call button", and then demonstrated by pushing the third button, the one I hadn't yet tried.
I made my way past the first and second nurses' stations on my way to my room at the very end of the hall. When I passed the third station, I saw a familiar face. It was the nurse who cared for me on my first night at NIH.
Nurse: What are you doing up?!
Me: Oh. My roommate is kind of a loud sleeper. I went out to read for a while.
Nurse: She snore?
Me: Yep.
Nurse: You want some earplugs?
Me: You got some earplugs?!
Nurse: Sure do.
Me: Then, yes! Yes, I'd love some earplugs!
Nurse: Since you're up I think I'll just go get your vitals now.
We stepped into the darkened room, momentarily flooding it with light. Abruptly, the snoring halted, but only for a second. The nurse quietly giggled.
Oh glorious earplugs! Thank God for...zzz...I slept for three solid hours before transport arrived to wheel me off to surgery.
Everything was blissfully quiet. I read until 3:30 AM. Feeling like maybe sleep could happen even in the midst of the log-sawing taking place in my room, I closed my book and walked the couple of steps to the doors of 3NW. I waved my hand in front of the sensor that normally signals the door to open, but they remained closed! Uh oh. I waved my hand again at the magic door-opening-square on the wall. Magic Limit Exceeded. You lose! It wasn't working; the doors remained firmly shut. I pushed on the doors manually. Nope. They were truly locked. Am I gonna be sleeping in a chair tonight? I had my cell phone in my robe pocket, but I didn't know who to call. I didn't have phone numbers for anyone at the hospital. What to do?
Breathe.
Surely people come through these doors after hours. There's probably a sign if I just…oh look! A sign. Next to the door, behind a portable stand and fixed to the wall was a sign that read, "After hours press call button." Underneath the sign were three buttons: a white one, a red one, and another white one. None of the buttons were labeled. Hmmm…I pushed the first button. Nothing. I pushed the second (red one). Nothing. Then I tried the door again, and that time someone heard me! A nurse came to the door and let me in. She didn't ask who I was—it was clear from my plastic ID bracelet, frumpy hospital gown and robe that I was a patient. She explained that I could "just hit the call button", and then demonstrated by pushing the third button, the one I hadn't yet tried.
I made my way past the first and second nurses' stations on my way to my room at the very end of the hall. When I passed the third station, I saw a familiar face. It was the nurse who cared for me on my first night at NIH.
Nurse: What are you doing up?!
Me: Oh. My roommate is kind of a loud sleeper. I went out to read for a while.
Nurse: She snore?
Me: Yep.
Nurse: You want some earplugs?
Me: You got some earplugs?!
Nurse: Sure do.
Me: Then, yes! Yes, I'd love some earplugs!
Nurse: Since you're up I think I'll just go get your vitals now.
We stepped into the darkened room, momentarily flooding it with light. Abruptly, the snoring halted, but only for a second. The nurse quietly giggled.
Oh glorious earplugs! Thank God for...zzz...I slept for three solid hours before transport arrived to wheel me off to surgery.
Thursday, June 11, 2015
More Screening
With apheresis and the MRI behind me, a new set of tests was scheduled for the next day. I had a lung function test in the morning, which was not very exciting. I merely had to inhale in one quick, deep breath, and then exhale while the tech kept saying, "Go…go…go!go!go!" to the point that I was sure I was exhaling nothing but dust particles from the very bottom of my lungs. Expiration testing happened twice. Next came a test which I think is called, "Hold Your Breath Until You See Stars." That test was repeated once, but then I was done! Easy peasy. No fasting; no radiation. My favorite.
Up next, a renogram. This is a test that determines whether or not the kidneys are doing their job. This one isn't standard for the TIL trial, but since I had had surgery on both kidneys shortly before I was diagnosed, the medical team wanted to make sure that my kidneys were going to be able to withstand the drugs required for the trial.
As I've mentioned in previous posts, no female under the age of 55 gets near the imaging equipment without a negative pregnancy test. Once again, my admittance to the scanning area was postponed while we waited for the results of a "STAT" pregnancy test. After almost an hour, I was escorted into a room that felt about as large as my dishwasher. The scanner took up the majority of the space. The poor technician had no room to maneuver at all. He positioned me on the narrow table, face up. The beam-generator was underneath me embedded into the table and aimed at my lower back. When the tech needed to move to the opposite side of the table, the only option was for him to duck under the table! There was no room to walk around.
The poor technician (tPT) lugged a locked, leaden case into the room and removed a vial of the radioactive element technetium.
Me: What's in the box?
the Poor Technician: Technetium.
Me: That sounds like a made-up name.
Patrick: What isotope?
Me [in my head]: Wait, what? That's a real thing?
the Poor Technician: Ninety-nine. It's one of the daughters of molybdenum.
Me, unspoken: [One of the what? These two are going to hit it off famously...]
My husband and tPT then yammered on and on about the Periodic Table of Elements, isotopes, and half-lifes (lives?) as tPT arranged the equipment. I only rolled my eyes and marveled at just how geeky my husband is. Twenty-five years of marriage had not--until now--revealed (to me, at any rate) the depth of his knowledge of chemistry. It was a little disturbing.
FYI, technetium is number 43 on the Periodic Table of Elements. I won't hold it against you if you don't care.
tPT injected the radioactive technetium into my vein via the I.V. that remained in my left hand from the previous day's apheresis procedure. (Thanks again, Vein Lady!) He then ducked under the table and popped up on the other side to adjust the computer monitor so that we could watch as a grainy black and white image became visible there. "Those are your kidneys," he explained, pointing to the screen. "Now lie still. This will take forty minutes."
The images on the monitor brought to mind an hourglass with technetium playing the role of the timer's sand. Instead of the typical hourglass upper chamber, this timer had two—two kidneys filling up with radioactive "sand", and slowly emptying into a lower chamber, the bladder. tPT injected what I think was saline into the I.V. numerous times during the course of the test, ducking under the table each time. He probably would have preferred it much better had the I.V. been placed in my right hand instead of the (far) left hand. It would've meant a lot less exercise for him.
Minute after slowly-slogging minute passed as we watched grainy specks of light on the screen move from the kidneys into the the bladder. At one point a man in a khaki uniform came in to check on our progress. (I found out later that he was a member of the National Health Service. Their uniforms are remarkably similar to those of the Navy.) Finally, the forty minutes expired and I was released with the instruction, "Drink lots of fluids." Later, my immunotherapy fellow would report that my kidneys were in good shape. It was another hurdle cleared on the way to the clinical trial.
Next up was an interview with some anesthesiology people—first a nurse, then a doctor. They pretty much repeated each of the many, many questions that other people had already asked. Each one double-checked that the information stored in my electronic file matched my responses. No one could accuse NIH of not being thorough enough.
The anesthesiologist shared this helpful bit of insider-intel: the food service menus in the rooms are "merely suggestions". She explained, "You can order anything you want. Go, have a milkshake! You have surgery coming up…but nothing after midnight. Not even water!" Though I was tempted to, I didn't order a milkshake that night. I discovered later that this bit of intel was not entirely accurate. Though in theory, I suppose I could "order anything I want", that didn't mean that it was available. Oh well. It doesn't get any easier than merely dialing "3"...
Not-so-pleasant was sharing a room with another patient. My roommate on 3NW was a lovely woman who happened to snore like a chainsaw. Surgery to remove a lung tumor for use in the clinical trial would happen the next day; "first of the morning". Listening to the snoring, I reminded myself of what seems to be the over-arching principle concerning my ability to find rest in a hospital--any hospital: "No sleep for you." Though it was past 11:00 PM, I ventured out of the room in search of a place to read.
Four hours later, I returned to the ward on the wrong side of a locked door...
Up next, a renogram. This is a test that determines whether or not the kidneys are doing their job. This one isn't standard for the TIL trial, but since I had had surgery on both kidneys shortly before I was diagnosed, the medical team wanted to make sure that my kidneys were going to be able to withstand the drugs required for the trial.
As I've mentioned in previous posts, no female under the age of 55 gets near the imaging equipment without a negative pregnancy test. Once again, my admittance to the scanning area was postponed while we waited for the results of a "STAT" pregnancy test. After almost an hour, I was escorted into a room that felt about as large as my dishwasher. The scanner took up the majority of the space. The poor technician had no room to maneuver at all. He positioned me on the narrow table, face up. The beam-generator was underneath me embedded into the table and aimed at my lower back. When the tech needed to move to the opposite side of the table, the only option was for him to duck under the table! There was no room to walk around.
The poor technician (tPT) lugged a locked, leaden case into the room and removed a vial of the radioactive element technetium.
Me: What's in the box?
the Poor Technician: Technetium.
Me: That sounds like a made-up name.
Patrick: What isotope?
Me [in my head]: Wait, what? That's a real thing?
the Poor Technician: Ninety-nine. It's one of the daughters of molybdenum.
Me, unspoken: [One of the what? These two are going to hit it off famously...]
My husband and tPT then yammered on and on about the Periodic Table of Elements, isotopes, and half-lifes (lives?) as tPT arranged the equipment. I only rolled my eyes and marveled at just how geeky my husband is. Twenty-five years of marriage had not--until now--revealed (to me, at any rate) the depth of his knowledge of chemistry. It was a little disturbing.
FYI, technetium is number 43 on the Periodic Table of Elements. I won't hold it against you if you don't care.
tPT injected the radioactive technetium into my vein via the I.V. that remained in my left hand from the previous day's apheresis procedure. (Thanks again, Vein Lady!) He then ducked under the table and popped up on the other side to adjust the computer monitor so that we could watch as a grainy black and white image became visible there. "Those are your kidneys," he explained, pointing to the screen. "Now lie still. This will take forty minutes."
The images on the monitor brought to mind an hourglass with technetium playing the role of the timer's sand. Instead of the typical hourglass upper chamber, this timer had two—two kidneys filling up with radioactive "sand", and slowly emptying into a lower chamber, the bladder. tPT injected what I think was saline into the I.V. numerous times during the course of the test, ducking under the table each time. He probably would have preferred it much better had the I.V. been placed in my right hand instead of the (far) left hand. It would've meant a lot less exercise for him.
Minute after slowly-slogging minute passed as we watched grainy specks of light on the screen move from the kidneys into the the bladder. At one point a man in a khaki uniform came in to check on our progress. (I found out later that he was a member of the National Health Service. Their uniforms are remarkably similar to those of the Navy.) Finally, the forty minutes expired and I was released with the instruction, "Drink lots of fluids." Later, my immunotherapy fellow would report that my kidneys were in good shape. It was another hurdle cleared on the way to the clinical trial.
Next up was an interview with some anesthesiology people—first a nurse, then a doctor. They pretty much repeated each of the many, many questions that other people had already asked. Each one double-checked that the information stored in my electronic file matched my responses. No one could accuse NIH of not being thorough enough.
The anesthesiologist shared this helpful bit of insider-intel: the food service menus in the rooms are "merely suggestions". She explained, "You can order anything you want. Go, have a milkshake! You have surgery coming up…but nothing after midnight. Not even water!" Though I was tempted to, I didn't order a milkshake that night. I discovered later that this bit of intel was not entirely accurate. Though in theory, I suppose I could "order anything I want", that didn't mean that it was available. Oh well. It doesn't get any easier than merely dialing "3"...
Not-so-pleasant was sharing a room with another patient. My roommate on 3NW was a lovely woman who happened to snore like a chainsaw. Surgery to remove a lung tumor for use in the clinical trial would happen the next day; "first of the morning". Listening to the snoring, I reminded myself of what seems to be the over-arching principle concerning my ability to find rest in a hospital--any hospital: "No sleep for you." Though it was past 11:00 PM, I ventured out of the room in search of a place to read.
Four hours later, I returned to the ward on the wrong side of a locked door...
Wednesday, June 10, 2015
Another Brain MRI
I needed to have a brain MRI as part of the screening process for the clinical trial. One of the criteria for the trial is that the patient has no more than three "brain mets" (tumors). Colon cancer can metastasize to just about anywhere, sadly, and so I was scheduled for the test at 9:00 PM that first day.
When the time came for my appointment, an escort appeared at my door. She brought me to a place far, far from my room. I tried to pay close attention to where we were going, but we were talking along the way, and so I wasn't sure I would do a great job of remembering. I checked in at the reception area and sat in the waiting room for 40 minutes. Three patients who had arrived after me were called in before me. "What's that about?" I wondered. A tech greeted me and then told me that it would be at least 20 minutes longer because they were over-booked. I knew Pat was waiting in my room for me, but I didn't have my phone to explain why I wasn’t back yet. I decided to try to find my way back to the room so that he wouldn't be left there wondering where I was. Thankfully (and surprisingly) I made my way to the room. Patrick walked back to MRI with me and we waited together until my name was called, then he went to the Safra Lodge* for the night.
As the tech and I passed a blue sensor on the wall, he asked me to "twirl around" in front of it to determine whether or not I had any metal on or in me that would interfere with the MRI. I passed the twirl-test, so we continued on to one of several scan rooms. He positioned me on the table, stuffed earplugs into my ears, and added heavy headphones on top of those. He lowered a cage over my head and asked if I was OK. "Yes." He went to the control room, and soon after, the table I was on slid into the MRI machine. No music this time, just a whole lot of noise. Clunking, whistling, ringing, tapping...all sorts of noises. "Be still Mrs. Ryan," he'd say. I was still. After a lot of being still and listening to loud noises, the tech moved the table back out of the machine and reminded me again, "Don't move." Was I moving? I wasn't moving. He injected my IV (Vein Lady had left it in specifically for this procedure) with contrast and started the process again. This time, however, there was a difference. Something was brushing against my chin. What the heck? I couldn't reach up to swipe it away, and I couldn't move my head to make it fall off. Greaaaaaat. So. "What is it?" I thought, "Could it be a SPIDER?! Oh God, please don't let it be a spider! or a fly! or anything with any number of legs. Or wings! ACK!" So this what-ever-it-is flitted across my chin until the end of the test. Turns out it was a strap from the closure of the apparatus that surrounded my head. Not a spider. Thank Goodness.
It was 10:45 PM when the MRI finished. The tech asked me if I could find my way back.
Me: Yes, I think so.
Him: Are you sure? Everybody's gone now. If you come back here, nobody's gonna hear you.
Me: I'll be OK. [walking toward the wrong door]
Him: This way [pointing to the correct exit]
Me: Right. Thank you. Good night!
Off I went to face the challenge of the mind-boggling, circuitous passageways that lead people who know where they’re going directly to their destinations. For people like me, however, often that is not the immediate result. Yet, I was confident that this time, I could do it with ease. Hadn’t I just traversed this very path only an hour ago? Forward into the cavernous maw of the silent, confusing hospital I went, escort-free. All alone. Not a soul was to be seen or heard anywhere past the sliding doors of the MRI waiting room. Hallway stretched in front of seemingly endless hallway. I navigated mostly according to which paintings I recognized on the walls. I came to a familiar door that I'm certain I was supposed to pass through but! It was now locked! "Oh no!" my brain screamed, "No!" but I wasn't too panicked yet. Instead of wandering around on a floor where my room wasn’t located, I decided to make getting to the third floor my goal. Once there, I was able to follow the signs to “Patient NW” and then sneak quietly back into my darkened room. Success!
My nurse came in shortly afterward and declared, "We couldn't find you." I couldn’t find you either! "Oh,” I said, “MRI was really backed up." I didn’t mention the meandering, doubling-back, circling, and being lost that also happened. Nurses don't need to know everything.
*The Safra Lodge is located on the campus of NIH. Up to four of a patient's family members can stay, free of charge, subject to availability. All guests of the Lodge must be referred by the patient's medical team.
When the time came for my appointment, an escort appeared at my door. She brought me to a place far, far from my room. I tried to pay close attention to where we were going, but we were talking along the way, and so I wasn't sure I would do a great job of remembering. I checked in at the reception area and sat in the waiting room for 40 minutes. Three patients who had arrived after me were called in before me. "What's that about?" I wondered. A tech greeted me and then told me that it would be at least 20 minutes longer because they were over-booked. I knew Pat was waiting in my room for me, but I didn't have my phone to explain why I wasn’t back yet. I decided to try to find my way back to the room so that he wouldn't be left there wondering where I was. Thankfully (and surprisingly) I made my way to the room. Patrick walked back to MRI with me and we waited together until my name was called, then he went to the Safra Lodge* for the night.
As the tech and I passed a blue sensor on the wall, he asked me to "twirl around" in front of it to determine whether or not I had any metal on or in me that would interfere with the MRI. I passed the twirl-test, so we continued on to one of several scan rooms. He positioned me on the table, stuffed earplugs into my ears, and added heavy headphones on top of those. He lowered a cage over my head and asked if I was OK. "Yes." He went to the control room, and soon after, the table I was on slid into the MRI machine. No music this time, just a whole lot of noise. Clunking, whistling, ringing, tapping...all sorts of noises. "Be still Mrs. Ryan," he'd say. I was still. After a lot of being still and listening to loud noises, the tech moved the table back out of the machine and reminded me again, "Don't move." Was I moving? I wasn't moving. He injected my IV (Vein Lady had left it in specifically for this procedure) with contrast and started the process again. This time, however, there was a difference. Something was brushing against my chin. What the heck? I couldn't reach up to swipe it away, and I couldn't move my head to make it fall off. Greaaaaaat. So. "What is it?" I thought, "Could it be a SPIDER?! Oh God, please don't let it be a spider! or a fly! or anything with any number of legs. Or wings! ACK!" So this what-ever-it-is flitted across my chin until the end of the test. Turns out it was a strap from the closure of the apparatus that surrounded my head. Not a spider. Thank Goodness.
It was 10:45 PM when the MRI finished. The tech asked me if I could find my way back.
Me: Yes, I think so.
Him: Are you sure? Everybody's gone now. If you come back here, nobody's gonna hear you.
Me: I'll be OK. [walking toward the wrong door]
Him: This way [pointing to the correct exit]
Me: Right. Thank you. Good night!
Off I went to face the challenge of the mind-boggling, circuitous passageways that lead people who know where they’re going directly to their destinations. For people like me, however, often that is not the immediate result. Yet, I was confident that this time, I could do it with ease. Hadn’t I just traversed this very path only an hour ago? Forward into the cavernous maw of the silent, confusing hospital I went, escort-free. All alone. Not a soul was to be seen or heard anywhere past the sliding doors of the MRI waiting room. Hallway stretched in front of seemingly endless hallway. I navigated mostly according to which paintings I recognized on the walls. I came to a familiar door that I'm certain I was supposed to pass through but! It was now locked! "Oh no!" my brain screamed, "No!" but I wasn't too panicked yet. Instead of wandering around on a floor where my room wasn’t located, I decided to make getting to the third floor my goal. Once there, I was able to follow the signs to “Patient NW” and then sneak quietly back into my darkened room. Success!
My nurse came in shortly afterward and declared, "We couldn't find you." I couldn’t find you either! "Oh,” I said, “MRI was really backed up." I didn’t mention the meandering, doubling-back, circling, and being lost that also happened. Nurses don't need to know everything.
*The Safra Lodge is located on the campus of NIH. Up to four of a patient's family members can stay, free of charge, subject to availability. All guests of the Lodge must be referred by the patient's medical team.
Tuesday, June 9, 2015
The Return of Vein Lady
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.
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.
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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