Day 3 of the clincial trial fell on July 4, Independence Day in the U.S. It was the loneliest day for me to date. The immunotherapy fellows would be rotating out, and new doctors would rotate in. The attending physician would remain the same, however, and I was grateful for that. Nurses I had never met before would care for me over the holiday weekend; all of the familiar ones had the day off. I was feeling lonely and abandoned.
By this time I was familiar with the ebb and flow of the care-givers' routines. Vital signs, weight, and labs were drawn around 5 AM each day. I was given a pill cup with the morning's dose of anti-fungal, anti-yeast, anti-biotic, and anti-inflammatory drugs. A new I.V. bag was hung, and then I was left alone to rest. My sleep was challenged by the constant whirr of the I.V. pumps, and often interrupted by one or more of them sounding an alarm. The equipment seems to alarm most-often when it detects air in the line. Sometimes, the read-out on the machine would indicate "Hit Pause / Restart", which was easy enough to do myself, but more often the loud beeping could only be quieted by a nurse.
Boosted by the prior night's success with eating an apple, I tried another one at breakfast. All good. At lunchtime, I ordered two items, the one I thought I might be able to eat (mac-n-cheese) and a back-up item in case I couldn't handle the first item. I think the second item was toast. I don't remember. When the food arrived, I approached it cautiously. I was able to eat most of the 3 oz. scoop of mac-n-cheese, but it took an inordinate amount of time. Nausea still crowded at the fringes of my appetite, however, I began to anticipate the possibility of being able to eat a baked potato. Not yet! Not yet.
The day dragged along. I slept a lot, and read, and prayed. I skyped with my daughters, who were on a road trip together for the long weekend. I remembered fun times from earlier 4th of July celebrations--time spent preparing loads of picnic fare: homemade chocolate chip cookies, potato salad, and tons and tons of fresh melon, berries, and nectarines. Patrick would always grill something delicious. I missed the food. I missed my family. I was homesick.
At some point, a nurse gave me the wise advice to regard the taking of a daily shower as the most important goal for the day. Neutropenic patients are at risk of infection, and personal hygiene is strongly encouraged--not to include shaving, tweezing, or flossing, however. Those things pose too big a risk. I confess that I was unable to suppress the urge to floss daily (got caught recently--not doing it anymore...sigh). An evening mouth-rinse with sickeningly sweet, gag-worthy fluoridated liquid is expected of the nursing staff. Every single night I had to talk myself into using this gunk. It was never easy.
Showers at this point were best coordinated with the completion of whatever drug was being infused. The nurse could disconnect the I.V. pump, giving me a great sense of freedom for the duration of the shower. My I.V. meds are infused through a Hickman catheter, which in my case includes two "lines", terminating in plastic caps (one red, one blue) that sort of dangle directly from an opening in my chest. The catheter exit site (wound site) is covered with a 3" x 3" mepilex bandage. Normally, they use a transparent dressing, but I am sensitive to adhesive. My skin would blister and itch with the standard dressing. In terms of nursing care, the reality is that instead of cleaning the site and changing the dressing once per week, it must be done daily. The reason is that the low-tack dressings are opaque, thus preventing the staff from being able to note signs of infection at the site.
From underneath the bandage, a single catheter extends outside my body to a plastic junction thingy in which two separate catheters are joined to the initial one. The junction piece connects the three catheters together, forming an upside-down "Y" shape. The catheter is effectively "split" in two, introducing what are called "lumen"--the two branches of the "Y". Each lumen includes it's own clamp and capping hardware. It looks like I have two ball-point pens hanging from a bandage on my chest. One lumen is capped blue; the other red. The junction piece has been secured to the main catheter by the surgeon with (I guess) nylon thread. It is stiff material, like fishing line, which I need to be protected from, in case it were to puncture the skin. To accomplish this, the junction piece is clipped into a little gizmo that provides stability and a mounting surface. This gizmo, then, is anchored to an adhesive patch of some sort, which would normally then be stuck directly on the patient's skin. Since my skin can't tolerate the adhesive on the patch, the surgeon used a piece of duo-derm between my skin and the patch. This whole assemblage of stuff: junction, clip, patch, and duo-derm swatch, sits just below the dressing I described above. These items are permanent fixtures while I'm here, and do not require additional care until the duo-derm layer gets mushy (it has happened only once so far). (Duo-derm is some magical substance that adhesive-sensitive people can tolerate having on their skin for long periods. So far, so good in my case. It is thin, spongy, and flexible.)
Every day since the surgery to place the Hickman catheter, the best part of each day (not counting skyping with the family) has been the changing of the dressing. Each time the nurse peels away the mepilex dressing, my skin rejoices. Next comes a vigorous scrubbing with a wand-thingy (CloraPrep) to remove any dead skin cells, and clean the area. After two minutes of drying time, a fresh dressing is applied. The nurse writes the current date on the dressing, and my skin goes back to being annoyed. Note: "annoyed" is far better than "angry".
I planned to campaign heavily to have the Hickman removed before I am released. Even if it were to delay my departure by days, I would agree to it. That's how much I hate this thing.
Thursday, July 9, 2015
Wednesday, July 8, 2015
Day 2
Days 2, 3, and 4 fell on the Independence Day weekend. I was still nauseous, and receiving I.V. zofran. The NIH nutritionist had paid a visit before treatment began to discuss the importance of at least trying to eat something. She suggested that I keep pretzels or crackers nearby, and pointed out that the Food Service offered a variety of calorie-dense beverages. She offered a hand-out of the many different options, and highlighted two of them: Ensure Clear, and BioCare, which is a freezy sort of thing. I ordered both.
I was able to drink the (tiny) carton of Ensure Clear, juuuust barely. It screamed of artificial flavors, the taste of which were magnified by the chemo drugs I had taken days before. I pretended that I was drinking "health", but it did not feel that way at all. By the time I was able to finish the whopping 20 ml serving, the other item, BioCare, had all but melted. I tried a bit of it, but again, the strong flavors were too much to tolerate. I left it on the tray. Not too many minutes later, up came the Ensure Clear.
I tried.
During this time, photos of food were to be avoided if at all possible. I had to refrain from FaceBook because it was full (seemed to me) of photos of food. Much gagging. Which...why? It's like the stomach was not happy to be merely "empty", it also wanted to be wrung dry. I crashed onto the bed after one such episode thinking, "I wonder if this counts as an ab workout."
Here's the cruel thing. I wanted to eat, but could not think of a single food item that I could imagine myself actually consuming. I was reminded of a person in my community who had recently died of stomach cancer. I did not know her well, but I know that she suffered greatly for many weeks prior to her passing; part of her suffering was that she was hungry, but unable to eat due to the disease. I asked for her intercession (See Communion of Saints), and prayed myself to sleep.
When I woke, I realized that Food Service would be ending for the day, shortly. I wanted to eat something, but what? I grabbed the bedside menu, hoping to find just one item that would appeal. Anything. Just before I opened the menu though, the graphic on the menu's cover seemed to leap off the page. I hadn't really even noticed the graphics prior to that moment, but now a monochrome photo of apples on the back cover struck me as if it were in full, screaming color. It shouted, "Eat an apple!"
I ordered an apple.
How I would love to peek inside the minds (and break-room) of the people working the phones in Food Service. I dial "3", give my name, building wing, and room number, and they respond (always), "You're on a regular immunosuppressed diet. What can I get you?" People on chemo, I know from experience, order some strange combinations. I'd like mac-and-cheese w/ketchup, and a grape popsicle, please. The order-taker person is never fazed. They repeat the order, ask for confirmation, and give an estimated delivery time. I wonder though, what conversations they might have with each other off-line:
Hypothetical Order Taker #1: Somebody just ordered mashed potatoes with tomato sauce.
Hypothetical Order Taker #2: That's nothing. I just put one in for broccoli with a side of peanut butter.
I digress.
Food Service appears with an apple. I stare at the apple for a long moment. Food Service has sliced it for me, but the seeds are still there. My first thought: The holiday staff is working the kitchen. The apple smells like life. I imagine what it could potentially be like though, should the apple...reappear...later in my emesis container. I ever-so-slowly (I am weak!) remove the seeds from one of the quartered sections. Here we go... Then! Happiness. I quickly decided, that I was not yet ready to brave the peel. I crunched away at the delicious apple, and spat out any peel (with the manners of a caveman). Thankfully, it stayed with me. I was thrilled.
When the nurse, this night a huuuuge man, came in to check my vitals, he asked if I had eaten any dinner. With all the pride of a kid who can finally tie his own shoes, I enthusiastically reported, "I ate an apple...but not the peel." He replied, "We call that applesauce." Funny! He doesn't get it, but it mattered not. I had caught a glimpse of the light at the end of the nausea tunnel, and my spirit soared.
I was able to drink the (tiny) carton of Ensure Clear, juuuust barely. It screamed of artificial flavors, the taste of which were magnified by the chemo drugs I had taken days before. I pretended that I was drinking "health", but it did not feel that way at all. By the time I was able to finish the whopping 20 ml serving, the other item, BioCare, had all but melted. I tried a bit of it, but again, the strong flavors were too much to tolerate. I left it on the tray. Not too many minutes later, up came the Ensure Clear.
I tried.
During this time, photos of food were to be avoided if at all possible. I had to refrain from FaceBook because it was full (seemed to me) of photos of food. Much gagging. Which...why? It's like the stomach was not happy to be merely "empty", it also wanted to be wrung dry. I crashed onto the bed after one such episode thinking, "I wonder if this counts as an ab workout."
Here's the cruel thing. I wanted to eat, but could not think of a single food item that I could imagine myself actually consuming. I was reminded of a person in my community who had recently died of stomach cancer. I did not know her well, but I know that she suffered greatly for many weeks prior to her passing; part of her suffering was that she was hungry, but unable to eat due to the disease. I asked for her intercession (See Communion of Saints), and prayed myself to sleep.
When I woke, I realized that Food Service would be ending for the day, shortly. I wanted to eat something, but what? I grabbed the bedside menu, hoping to find just one item that would appeal. Anything. Just before I opened the menu though, the graphic on the menu's cover seemed to leap off the page. I hadn't really even noticed the graphics prior to that moment, but now a monochrome photo of apples on the back cover struck me as if it were in full, screaming color. It shouted, "Eat an apple!"
I ordered an apple.
How I would love to peek inside the minds (and break-room) of the people working the phones in Food Service. I dial "3", give my name, building wing, and room number, and they respond (always), "You're on a regular immunosuppressed diet. What can I get you?" People on chemo, I know from experience, order some strange combinations. I'd like mac-and-cheese w/ketchup, and a grape popsicle, please. The order-taker person is never fazed. They repeat the order, ask for confirmation, and give an estimated delivery time. I wonder though, what conversations they might have with each other off-line:
Hypothetical Order Taker #1: Somebody just ordered mashed potatoes with tomato sauce.
Hypothetical Order Taker #2: That's nothing. I just put one in for broccoli with a side of peanut butter.
I digress.
Food Service appears with an apple. I stare at the apple for a long moment. Food Service has sliced it for me, but the seeds are still there. My first thought: The holiday staff is working the kitchen. The apple smells like life. I imagine what it could potentially be like though, should the apple...reappear...later in my emesis container. I ever-so-slowly (I am weak!) remove the seeds from one of the quartered sections. Here we go... Then! Happiness. I quickly decided, that I was not yet ready to brave the peel. I crunched away at the delicious apple, and spat out any peel (with the manners of a caveman). Thankfully, it stayed with me. I was thrilled.
When the nurse, this night a huuuuge man, came in to check my vitals, he asked if I had eaten any dinner. With all the pride of a kid who can finally tie his own shoes, I enthusiastically reported, "I ate an apple...but not the peel." He replied, "We call that applesauce." Funny! He doesn't get it, but it mattered not. I had caught a glimpse of the light at the end of the nausea tunnel, and my spirit soared.
Monday, July 6, 2015
Day One
By now I had received the TILs, and three doses of IL-2. I toyed with the idea of stopping at three doses. Why invite trouble? Things were going so well though, that I agreed to Dose 4 at 3PM. I was still very nauseous; still receiving many, many medications both infused and orally. I think I mostly slept through this infusion, too. No side effects again, or rather, no additional side-effects. The nausea was a hold-over from the seven days of chemo.
I agreed to Dose 5, which would be administered at 11 PM. I had a sense of foreboding. It seemed like this was "too easy", and I silently offered thanksgiving prayers for all the people I knew who were praying for me. I went to sleep clutching two of the sacramentals (Catholic thing) that I brought with me: St. Benedict's Cross-Medal (crucifix and medal combined, given to me by a holy priest who said he'd pray that I got into the trial), and the Miraculous Medal (blessed by the archbishop of Detroit, and given to me by a friend). I slept pretty well between regular checks of my vital signs by the nursing staff. Again, no side-effects.
The attending doc visited the next morning (Day One of the trial) at rounds and expounded on how well he thought things were going. He was eager for me to try a sixth dose, but I was less so. I expressed my concerns and he assured me that the decision was mine to make. Because this treatment is so experimental, there are no standards for how many doses are indicated. What to do? American culture screams "more is better", but I don't subscribe to that point of view. Maybe "more" was just..."more". What if "more" was actually "worse"?
The doctors offered no advice on what I should do; the decision was entirely mine.
That morning, I prayed specifically for guidance about whether to continue the IL-2 infusions or to stop. I asked for a sign. Diarrhea set in very shortly after that prayer, and I told God, "Got it. Great sign! I'm done. Thanks." One of the fellows (not mine) visited to ask what I wanted to do. "I'd like to stop at 5." She asked why. I answered, "fatigue". I was bone-tired. She re-stated my request in more formal language, asked me if she had understood me correctly (she had) then stated, "I'll let [the attending physician] know." With that, she left.
It felt an enormous sense of relief that I wouldn't need to think about IL-2 anymore. Diarrhea did not happen again. I settled in for a glorious nap, even though it was the middle of the day.
I agreed to Dose 5, which would be administered at 11 PM. I had a sense of foreboding. It seemed like this was "too easy", and I silently offered thanksgiving prayers for all the people I knew who were praying for me. I went to sleep clutching two of the sacramentals (Catholic thing) that I brought with me: St. Benedict's Cross-Medal (crucifix and medal combined, given to me by a holy priest who said he'd pray that I got into the trial), and the Miraculous Medal (blessed by the archbishop of Detroit, and given to me by a friend). I slept pretty well between regular checks of my vital signs by the nursing staff. Again, no side-effects.
The attending doc visited the next morning (Day One of the trial) at rounds and expounded on how well he thought things were going. He was eager for me to try a sixth dose, but I was less so. I expressed my concerns and he assured me that the decision was mine to make. Because this treatment is so experimental, there are no standards for how many doses are indicated. What to do? American culture screams "more is better", but I don't subscribe to that point of view. Maybe "more" was just..."more". What if "more" was actually "worse"?
The doctors offered no advice on what I should do; the decision was entirely mine.
That morning, I prayed specifically for guidance about whether to continue the IL-2 infusions or to stop. I asked for a sign. Diarrhea set in very shortly after that prayer, and I told God, "Got it. Great sign! I'm done. Thanks." One of the fellows (not mine) visited to ask what I wanted to do. "I'd like to stop at 5." She asked why. I answered, "fatigue". I was bone-tired. She re-stated my request in more formal language, asked me if she had understood me correctly (she had) then stated, "I'll let [the attending physician] know." With that, she left.
It felt an enormous sense of relief that I wouldn't need to think about IL-2 anymore. Diarrhea did not happen again. I settled in for a glorious nap, even though it was the middle of the day.
Thursday, July 2, 2015
Day Zero aka Cell Day
The night before the cell (TIL) infusion my immunotherapy fellow arrived in my room to see how I was doing and to ask if I had any questions. He explained that many people experience shortness of breath during the infusion because the cells' first destination, due to human anatomy, is the lungs. He said the infusion itself would take about 20 minutes (or 30...sorry, details fuzzy!). I just stared at him a moment, then:
Me: I'm really the first?
Doc: You are!
Me: That is really cool.
Doc: It really is.
We have these deep conversations, my fellow and I. He left for the night, and I fell to sleep offering prayers of thanksgiving. It was on December 19th (my birthday) that I made the first phone call to NIH, and now here I was six months later, awaiting the event that I had hoped and prayed for--and begged others to pray for. It was going to happen the very next day, July 1.
In the morning the attending physician and his entourage walked in and asked, "Are you excited for today?!" to which I responded something lame that I don't recall. "I'll take that as a 'yes'", he said.
Around noon the research nurse came in to explain what would happen. I drew "Welcome Home TILs--Do your thing!" in big letters on the dry erase board, and set to work on creating a play list for the infusion. This was advice given to me by K., another CRC patient who had received TIL therapy just a couple of weeks before.†
The shift nurse came in, and a bag with 148-billion of my own tumor infiltrating lymphocytes was hung on the I.V. pole. The bag was designed in a way that funneled the cells toward the opening so that the bag could be emptied as completely as possible.
My playlist started with Queen's Don't Stop Me Now, which the nurse appreciated (ooh! Party time!). Anything by Queen reminds me of Dennis, a brother of mine who died at age 29 (not cancer). He was all music, all the time. Next up on the playlist was Frankenstein by the Edgar Winter Group. This one reminds me of another brother, Jay, who also died (also not cancer) way too young. (I remember one summer in particular when he'd call the radio station to request this song, just about every day.) Next were Coldplay's Viva La Vida, Counting Crow's Big Yellow Taxi, and to finish, two by Matt Maher: Alive Again, and Your Grace Is Enough.
I experienced no side-effects whatsoever as the cells were going in.
After the infusion, the nurse brought in a Pepperidge Farms Chocololate Fudge cake! She presented the cake to Patrick and me with the greeting, "This is to celebrate the birthday of your new cells!" It was a charming gesture. I was only able to eat a couple of very small bites, because I was still nauseous, but: chocolate!
After a few hours, the first dose of IL-2 was administered. It takes 15 minutes or so for the infusion. This drug is the one I was most concerned about--even moreso than the cyclophosphamide. Side effects for IL-2 are many and unpredictable. Chief among them, I was told, are hallucinations and vivid dreams. Fevers and chills are common, and I was told to expect to be asked questions to test my awareness throughout the day--questions like: What day is it? or Who is the President?
Preceding the infusion of IL-2 would be I.V. antibiotics, I.V. anti-nausea meds, and oral doses of Tylenol and a couple of little green pills whose name I forgot (indocin?), prescribed to reduce inflammation. I'd also be on I.V. fluids pre- and post- infusion of the IL-2.
I had heard stories about IL-2. People sometimes react poorly to the first infusion. I wondered where the doctors were. "Shouldn't they be in the room? Maybe they're in the hallway," I thought. "Maybe they don't want to scare me..."
For the first hour or so after the infusion stopped, I felt no side effects. About thirty minutes after that, I got dizzy and felt hot. I kept a cold, wet washcloth near me and alternated using it on the back of my neck or across my forehead. That helped a lot. My vital signs were measured several times. My blood pressure dropped a bit, but not to dangerous levels. I slept. When I woke, I was still a bit dizzy, but feeling normal otherwise. I was able to eat a few bites of dinner for the first time in many days.
More oral meds were brought--four pills. These drugs were standing in for my depleted immune system.
Around 11:00 PM on Day 0, the second dose of IL-2 was hung. Whenever this drug, or any of the chemo drugs, or the cells themselves are hung, a second nurse is called in to ensure that no oversights are made. I'm asked each time for my name and date of birth. They scan my badge, the drugs are scanned, and then the primary nurse starts the infusion. Once the fluid starts to drip, I'm left alone to sleep.
I did not have any dreams or hallucinations! I was kind of surprised, because during the nights leading up to this one, I had had some vivid dreams. When the nurse came into my room at 5:00 AM to draw the requisite vials of blood, she asked how I felt in her sweet, Southern drawl.
Nurse: How you doin'? You don't look like any IL-2 patient I ever saw.
Me: I feel great. I slept really well.
Nurse: No side effects? No nausea? Dizziness? Fever? Chills?
Me: Nope. It was easier than the first dose.
Nurse: Well, I'm guessin' the doctor is goin' to OK the start of dose 3 then! Great job!
Me [in my head]: I had nothing to do with it. I just laid here.
She came in a few minutes later and related the exchange she had just had with the on-call fellow. "He said, 'No side effects? Are you kiddin' me?'". We laughed.
So far, so good.
Eventually, they say my body will show signs that it is time to stop the IL-2. I asked what signs specifically, and one of the fellows mentioned fluid retention, rash, hallucinations, or other things. "Each case is different. We are watching everything though, and we will know if something changes," he assured me.
I feel that I am in very good hands here at NIH. I am able to skype with the kids almost every night, which keeps my spirits up. Oh, how I miss my "babies"!
Day 1 of the trial is underway as I type...
†Added later: K. did not respond to TIL therapy. Sadly, she died in February, 2016. K. was so very enthusiastic about contributing to medical science--it was impossible to not be caught up in her excitement. I miss her.
Me: I'm really the first?
Doc: You are!
Me: That is really cool.
Doc: It really is.
We have these deep conversations, my fellow and I. He left for the night, and I fell to sleep offering prayers of thanksgiving. It was on December 19th (my birthday) that I made the first phone call to NIH, and now here I was six months later, awaiting the event that I had hoped and prayed for--and begged others to pray for. It was going to happen the very next day, July 1.
In the morning the attending physician and his entourage walked in and asked, "Are you excited for today?!" to which I responded something lame that I don't recall. "I'll take that as a 'yes'", he said.
Around noon the research nurse came in to explain what would happen. I drew "Welcome Home TILs--Do your thing!" in big letters on the dry erase board, and set to work on creating a play list for the infusion. This was advice given to me by K., another CRC patient who had received TIL therapy just a couple of weeks before.†
The shift nurse came in, and a bag with 148-billion of my own tumor infiltrating lymphocytes was hung on the I.V. pole. The bag was designed in a way that funneled the cells toward the opening so that the bag could be emptied as completely as possible.
My playlist started with Queen's Don't Stop Me Now, which the nurse appreciated (ooh! Party time!). Anything by Queen reminds me of Dennis, a brother of mine who died at age 29 (not cancer). He was all music, all the time. Next up on the playlist was Frankenstein by the Edgar Winter Group. This one reminds me of another brother, Jay, who also died (also not cancer) way too young. (I remember one summer in particular when he'd call the radio station to request this song, just about every day.) Next were Coldplay's Viva La Vida, Counting Crow's Big Yellow Taxi, and to finish, two by Matt Maher: Alive Again, and Your Grace Is Enough.
I experienced no side-effects whatsoever as the cells were going in.
After the infusion, the nurse brought in a Pepperidge Farms Chocololate Fudge cake! She presented the cake to Patrick and me with the greeting, "This is to celebrate the birthday of your new cells!" It was a charming gesture. I was only able to eat a couple of very small bites, because I was still nauseous, but: chocolate!
After a few hours, the first dose of IL-2 was administered. It takes 15 minutes or so for the infusion. This drug is the one I was most concerned about--even moreso than the cyclophosphamide. Side effects for IL-2 are many and unpredictable. Chief among them, I was told, are hallucinations and vivid dreams. Fevers and chills are common, and I was told to expect to be asked questions to test my awareness throughout the day--questions like: What day is it? or Who is the President?
Preceding the infusion of IL-2 would be I.V. antibiotics, I.V. anti-nausea meds, and oral doses of Tylenol and a couple of little green pills whose name I forgot (indocin?), prescribed to reduce inflammation. I'd also be on I.V. fluids pre- and post- infusion of the IL-2.
I had heard stories about IL-2. People sometimes react poorly to the first infusion. I wondered where the doctors were. "Shouldn't they be in the room? Maybe they're in the hallway," I thought. "Maybe they don't want to scare me..."
For the first hour or so after the infusion stopped, I felt no side effects. About thirty minutes after that, I got dizzy and felt hot. I kept a cold, wet washcloth near me and alternated using it on the back of my neck or across my forehead. That helped a lot. My vital signs were measured several times. My blood pressure dropped a bit, but not to dangerous levels. I slept. When I woke, I was still a bit dizzy, but feeling normal otherwise. I was able to eat a few bites of dinner for the first time in many days.
More oral meds were brought--four pills. These drugs were standing in for my depleted immune system.
Around 11:00 PM on Day 0, the second dose of IL-2 was hung. Whenever this drug, or any of the chemo drugs, or the cells themselves are hung, a second nurse is called in to ensure that no oversights are made. I'm asked each time for my name and date of birth. They scan my badge, the drugs are scanned, and then the primary nurse starts the infusion. Once the fluid starts to drip, I'm left alone to sleep.
I did not have any dreams or hallucinations! I was kind of surprised, because during the nights leading up to this one, I had had some vivid dreams. When the nurse came into my room at 5:00 AM to draw the requisite vials of blood, she asked how I felt in her sweet, Southern drawl.
Nurse: How you doin'? You don't look like any IL-2 patient I ever saw.
Me: I feel great. I slept really well.
Nurse: No side effects? No nausea? Dizziness? Fever? Chills?
Me: Nope. It was easier than the first dose.
Nurse: Well, I'm guessin' the doctor is goin' to OK the start of dose 3 then! Great job!
Me [in my head]: I had nothing to do with it. I just laid here.
She came in a few minutes later and related the exchange she had just had with the on-call fellow. "He said, 'No side effects? Are you kiddin' me?'". We laughed.
So far, so good.
Eventually, they say my body will show signs that it is time to stop the IL-2. I asked what signs specifically, and one of the fellows mentioned fluid retention, rash, hallucinations, or other things. "Each case is different. We are watching everything though, and we will know if something changes," he assured me.
I feel that I am in very good hands here at NIH. I am able to skype with the kids almost every night, which keeps my spirits up. Oh, how I miss my "babies"!
Day 1 of the trial is underway as I type...
†Added later: K. did not respond to TIL therapy. Sadly, she died in February, 2016. K. was so very enthusiastic about contributing to medical science--it was impossible to not be caught up in her excitement. I miss her.
Wednesday, July 1, 2015
Days -3 to -1
Nausea, and more nausea. It's incredible how draining it can be. I had ample distractions, but the one looming thought that kept returning was this: liverwurst. Why? I wish I could tell you. Some mischievous part of my brain wanted to torment me even further, I guess.
I had the best luck with fresh apples and oranges. Something about chemo makes my nose hyper-sensitive to the smells and tastes of chemicals. Fresh food started to appeal, though I had to take it very, very slowly. Apples and oranges were the best.
Also happening during this time: a mysterious rash. I was itchy, nauseous, and thoroughly miserable. The attending doctor ordered hypo-allergenic gowns and sheets. Things have been improving since then. Patrick smuggled in some Benadryl lotion, which apparently the NIH pharmacy doesn't stock. They did provide I.V. benadryl, however.
Fludarabine, the nurses told me, was not the culprit. I was still suffering the effects of cyclophosphamide. The good news though, was that on Day -2 (if I recall correctly) it was safe to give me a different anti-nausea drug, aprepitant (Emend). That seems to be working pretty well. They're also using I.V. Zofran.
So. Lots of hazy, itchy, nauseating happenings on these three days. Doctors come and go twice a day. Usually my immunotherapy fellow visits one additional time without the entourage, too.
Patrick arrived back at the hospital last night (Day -1). I can't explain how wonderful it was to see him! I'm so thankful that he arrived safely (we live 8 hours from NIH, and he elected to drive this time).
Day Zero is here. Cell Day!
There will even be cake, they said.
I had the best luck with fresh apples and oranges. Something about chemo makes my nose hyper-sensitive to the smells and tastes of chemicals. Fresh food started to appeal, though I had to take it very, very slowly. Apples and oranges were the best.
Also happening during this time: a mysterious rash. I was itchy, nauseous, and thoroughly miserable. The attending doctor ordered hypo-allergenic gowns and sheets. Things have been improving since then. Patrick smuggled in some Benadryl lotion, which apparently the NIH pharmacy doesn't stock. They did provide I.V. benadryl, however.
Fludarabine, the nurses told me, was not the culprit. I was still suffering the effects of cyclophosphamide. The good news though, was that on Day -2 (if I recall correctly) it was safe to give me a different anti-nausea drug, aprepitant (Emend). That seems to be working pretty well. They're also using I.V. Zofran.
So. Lots of hazy, itchy, nauseating happenings on these three days. Doctors come and go twice a day. Usually my immunotherapy fellow visits one additional time without the entourage, too.
Patrick arrived back at the hospital last night (Day -1). I can't explain how wonderful it was to see him! I'm so thankful that he arrived safely (we live 8 hours from NIH, and he elected to drive this time).
Day Zero is here. Cell Day!
There will even be cake, they said.
Sunday, June 28, 2015
Days "Minus 7" through "Minus 4"
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.
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.
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.
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