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.
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