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.
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