Today marks exactly two years since the very bad day I heard the gastroenterologist frantically utter the horrible words, "It is most-likely cancer."
My husband, who accompanied me to the appointment, relayed later that the statement was the doctor's second attempt to break through my anesthesia-induced mental fuzziness. That may explain why I perceived his delivery as "frantic." I have no memory of what the doctor's initial words to me had been, or my response. Patrick reports that my first comment was, "That's not good news."
Master of Understatement, that's me!
The first year after diagnosis was spent mostly trying to not let chemotherapy kill me. I had an excellent medical oncologist, who was both thorough and compassionate, but I hated everything about chemotherapy.
The second year after diagnosis was spent discovering that chemotherapy hadn't cured me, and probably couldn't cure me. After that, I relentlessly pursued acceptance into a particular immunotherapy trial at NIH. Thankfully, I completed the treatment, and my first follow-up showed great promise. [First follow-up post here.]
As grueling as the trial sometimes was, it was fulfilling in a way that I can't completely describe. I felt that I was part of something bigger than myself; that my participation had merit, even though it was largely self-serving.
I'll be heading back to NIH soon for my second follow-up, hoping for success, and thanking God in advance, per Bl. Solanus Casey.
I feel lucky to have been given the chance to participate in the TIL trial, and I hope that my experience will help others who are facing a terminal diagnosis to consider participating in a clinical trial sooner rather than later. A patient's health and youth will be two of their most important assets when enduring the rigors of a clinical trial. Many people think of clinical trials as the last possible resort, but it doesn't have to be that way.
Some resources, if you'd like to start investigating clinical trials:
COLONTOWN is a "virtual neighborhood" of pages related to colorectal cancer. Resources for care givers are included as well. I spend a lot of time there, answering questions and talking about clinical trials. NBC Nightly News did a feature story recently that may be found here. To register to join this online support community, go to www.colontown.org You can find me in The CLINIC, which is where the newest trials are discussed.
FAQ about the TIL trial at NIH: Surgery Branch FAQ
Trial database for all cancers: ClinicalTrials.gov
Colorectal cancer (CRC) clinical trials here: Trial Finder
My friend Tom Marsilje's blog: Adventures In Living Terminally Optimistic
Thursday, September 3, 2015
Thursday, August 20, 2015
In Which the Chemo Port is Removed
Given the very encouraging news from NIH, and knowing that my chemo-port had been woefully neglected* for several months, I decided that it was time to have that thing removed.
I visited the same surgeon who had installed the port almost two years prior. He is also the doc who operated on me initially, soon after diagnosis.
The port would be removed in his office, with me wide awake. Oh, great. I was eager to get rid of the thing, so I wasn't going to let a little thing like revulsion stop me.
His first question to me was, "Are we sure we're done with this?" I showed him the relevant section of the radiologist's report; the same as you may have read about here. He smiled and said, "All right! Let's take it out."
Swabs of some antiseptic, then several shots of lidocaine (ow!). Then a lot of clanking of instruments and nausea-inducing tugs and pains and...comments. Oh, the comments. Could we just not talk about what is happening? Please?
Me: You don't have to tell me what you're doing. I'm not listening. I'm thinking about fluffy kittens and fuzzy baby ducklings.
Him: haha, that's great. You know, usually when I see you, you're under anesthesia. You're much more pleasant to talk to. See, there's this sheath that has grown all around the device. I'm having trouble cutting through it. [dig, pull, cut]
Me: No. Really. No need to tell me! I'm good.
Me [in my head]: What is it with surgeons?!
Him, finally: Ah. There we go! Would you like to keep any part of this for posterity?
Me: ABSOLUTELY NOT. No. Not even a little bit. [gaaack!]
Him: Well, I at least need to show it to you.
Me: WHAT?! No! No, you really don't. I don't want to see that.
And then? He showed it to me! ewwwwwwww...it looked like a giant eyeball with...dangling tubes hanging off of it. yuck. and YUCK. I only just barely glimpsed it because I slammed my eyes shut as soon as I knew what he was up to.
deep breath
So, that was gross. But! It's gone. Gone, gone, all the way gone. No more port. No more chemo. That is the fervent hope, at least. Thank you, Saints in heaven.
We talked about kidney stones and hernias. Not sure what I'll do about either one. He strongly encouraged me to follow up with my urologist about the 10mm stone in my left kidney. So. I will. I had an x-ray tonight, in preparation for an office visit later this month.
...as for the hernia. The surgeon is confident that he can repair it, and informed me that these never go away on their own (rats). I have to decide whether it bothers me enough to want to undergo another surgery. Not sure about that, yet.
Meanwhile, I'm thoroughly enjoying all of the not fainting that I've been doing since the blood transfusion at NIH a few days ago. My hemoglobin was at the low, low value of 7.4. I'm on a mission to make sure it doesn't get that low again--I was way more miserable than I needed to be. Who knew? Nobody knew. I had been improving, and then...not. It was a gradual thing.
Hemoglobin: Yay!
I'm now thinking about lesson plans and gathering the school books. I've got three boys who probably need to be starting (home) school soon! This year I will have boys in grades: 1, 3, and 8.
Third grade is one of the most-challenging (for me...probably for the kid, too). In third grade, they learn to write in cursive and to do long division. Yeah. Important stuff. ...stuff they don't immediately want to do, usually. Perhaps kid #4 will surprise me. You never know.
It's gonna be great!
*Ports of the type I had are supposed to be flushed with heparin and saline every...something...month? After my chemo regimen was over, I'd get the thing flushed at check-ups and scan follow-ups. Eventually, the nurses were not able to use it for drawing blood--ever. I stopped going in to get it flushed after December, when I started actively pursuing the trial at NIH.
I visited the same surgeon who had installed the port almost two years prior. He is also the doc who operated on me initially, soon after diagnosis.
The port would be removed in his office, with me wide awake. Oh, great. I was eager to get rid of the thing, so I wasn't going to let a little thing like revulsion stop me.
His first question to me was, "Are we sure we're done with this?" I showed him the relevant section of the radiologist's report; the same as you may have read about here. He smiled and said, "All right! Let's take it out."
Swabs of some antiseptic, then several shots of lidocaine (ow!). Then a lot of clanking of instruments and nausea-inducing tugs and pains and...comments. Oh, the comments. Could we just not talk about what is happening? Please?
Me: You don't have to tell me what you're doing. I'm not listening. I'm thinking about fluffy kittens and fuzzy baby ducklings.
Him: haha, that's great. You know, usually when I see you, you're under anesthesia. You're much more pleasant to talk to. See, there's this sheath that has grown all around the device. I'm having trouble cutting through it. [dig, pull, cut]
Me: No. Really. No need to tell me! I'm good.
Me [in my head]: What is it with surgeons?!
Him, finally: Ah. There we go! Would you like to keep any part of this for posterity?
Me: ABSOLUTELY NOT. No. Not even a little bit. [gaaack!]
Him: Well, I at least need to show it to you.
Me: WHAT?! No! No, you really don't. I don't want to see that.
And then? He showed it to me! ewwwwwwww...it looked like a giant eyeball with...dangling tubes hanging off of it. yuck. and YUCK. I only just barely glimpsed it because I slammed my eyes shut as soon as I knew what he was up to.
deep breath
So, that was gross. But! It's gone. Gone, gone, all the way gone. No more port. No more chemo. That is the fervent hope, at least. Thank you, Saints in heaven.
We talked about kidney stones and hernias. Not sure what I'll do about either one. He strongly encouraged me to follow up with my urologist about the 10mm stone in my left kidney. So. I will. I had an x-ray tonight, in preparation for an office visit later this month.
...as for the hernia. The surgeon is confident that he can repair it, and informed me that these never go away on their own (rats). I have to decide whether it bothers me enough to want to undergo another surgery. Not sure about that, yet.
Meanwhile, I'm thoroughly enjoying all of the not fainting that I've been doing since the blood transfusion at NIH a few days ago. My hemoglobin was at the low, low value of 7.4. I'm on a mission to make sure it doesn't get that low again--I was way more miserable than I needed to be. Who knew? Nobody knew. I had been improving, and then...not. It was a gradual thing.
Hemoglobin: Yay!
I'm now thinking about lesson plans and gathering the school books. I've got three boys who probably need to be starting (home) school soon! This year I will have boys in grades: 1, 3, and 8.
Third grade is one of the most-challenging (for me...probably for the kid, too). In third grade, they learn to write in cursive and to do long division. Yeah. Important stuff. ...stuff they don't immediately want to do, usually. Perhaps kid #4 will surprise me. You never know.
It's gonna be great!
*Ports of the type I had are supposed to be flushed with heparin and saline every...something...month? After my chemo regimen was over, I'd get the thing flushed at check-ups and scan follow-ups. Eventually, the nurses were not able to use it for drawing blood--ever. I stopped going in to get it flushed after December, when I started actively pursuing the trial at NIH.
Wednesday, August 12, 2015
First Follow-Up: Encouraging News
This week marks six-weeks post-cells. I had a CT and MRI, after which I submitted a "Release of Medical Records" form so that I could obtain a copy of the images for my use, as well as a copy of the radiology reports.
On Tuesday (yesterday) the disk was ready. Patrick loaded it onto the computer, while I read the report. We were both stunned. Here's an excerpt from the "Impressions" portion of the report:
Findings consistent with favorable response to therapy, given the decrease in size and conspicuity of multiple bilateral pulmonary metastases without new pulmonary lesions or evidence of other sites of metastases.
No new tumors. Existing tumors are already shrinking!
I was receiving a blood transfusion at the time of this news, so I wasn't able to do a lot of jumping up and down. Or, you know, any jumping up and down. But on the inside, I was in flight, and couldn't wait to speak to my doctor, to get the official word. It was all I could do to keep from dialing his cell right.that.second. I refrained. I thought it best to keep the joyful screaming face-to-face.
Eventually, my doctor did arrive, along with the Lab Guru who played The key role in all things related to my DNA and my TIL. He shared some of his vast knowledge and experience with us, and by the time he was finished explaining his findings so far, we were in awe.
What an amazing afternoon! It was great to see my fellow again, and though the attending physician was someone I didn't know well, she was pleasant and encouraging. She was a bit more reserved in her enthusiasm than I was, preferring that we wait for the next follow-up, which will, according to her, remove any doubt that it could've been the cytoxan and fludarabine (the "conditioning chemo" that I received as part of the treatment) that were responsible for the day's good news.
I accused her of spouting "Loser talk," and would hear none of it.
Me: This is just the first step in a successful treatment. No more loser-talk!
Attending: I have to say the words.
OK then. My next follow-up will be in five weeks. Five short weeks!
Meanwhile:
Go, TIL! Kill the bad guys!
On Tuesday (yesterday) the disk was ready. Patrick loaded it onto the computer, while I read the report. We were both stunned. Here's an excerpt from the "Impressions" portion of the report:
Findings consistent with favorable response to therapy, given the decrease in size and conspicuity of multiple bilateral pulmonary metastases without new pulmonary lesions or evidence of other sites of metastases.
No new tumors. Existing tumors are already shrinking!
I was receiving a blood transfusion at the time of this news, so I wasn't able to do a lot of jumping up and down. Or, you know, any jumping up and down. But on the inside, I was in flight, and couldn't wait to speak to my doctor, to get the official word. It was all I could do to keep from dialing his cell right.that.second. I refrained. I thought it best to keep the joyful screaming face-to-face.
Eventually, my doctor did arrive, along with the Lab Guru who played The key role in all things related to my DNA and my TIL. He shared some of his vast knowledge and experience with us, and by the time he was finished explaining his findings so far, we were in awe.
What an amazing afternoon! It was great to see my fellow again, and though the attending physician was someone I didn't know well, she was pleasant and encouraging. She was a bit more reserved in her enthusiasm than I was, preferring that we wait for the next follow-up, which will, according to her, remove any doubt that it could've been the cytoxan and fludarabine (the "conditioning chemo" that I received as part of the treatment) that were responsible for the day's good news.
I accused her of spouting "Loser talk," and would hear none of it.
Me: This is just the first step in a successful treatment. No more loser-talk!
Attending: I have to say the words.
OK then. My next follow-up will be in five weeks. Five short weeks!
Meanwhile:
Go, TIL! Kill the bad guys!
Friday, August 7, 2015
Here We Go Again...off to NIH
This weekend, my ever-patient husband and I will make the 8-hr. trek back to Bethesda for my first post-treatment follow-up. This is the appointment that everyone from the principle investigator, to the attending, the immunotherapy fellows, the nurses...they all caution, "Don't expect results this soon."
Somehow, the forewarnings of a handful of highly trained medical professionals do not penetrate the skulls of tenacious engineers, however. Our plan is (as always) to get copies of the scans as soon as they're available and continue to track the progression of the tumors' growth. Even if shrinkage isn't yet apparent, we are hoping that the growth-rate will be measurably slower. If the tumors' sizes fall short of the expected growth-curve, we'll dance for joy. (Patrick will dance, I will...clap enthusiastically. I'm a little too weak still to be doing any dancing. Also: neuropathy.)
We pray earnestly that no new tumors will have become evident since the previous scan.
We shall see.
I am not keen to go back, honestly. My strength is improving ever-so-slowly, but it is nowhere near what it needs to be for me to exist "as usual" (pre-treatment). Secretly, I am afraid they might kidnap me and keep me in the hospital for another month. ack! ack! ack!
No. That won't happen. I mean...wait! No, I'm just imagining things.
Somehow, the forewarnings of a handful of highly trained medical professionals do not penetrate the skulls of tenacious engineers, however. Our plan is (as always) to get copies of the scans as soon as they're available and continue to track the progression of the tumors' growth. Even if shrinkage isn't yet apparent, we are hoping that the growth-rate will be measurably slower. If the tumors' sizes fall short of the expected growth-curve, we'll dance for joy. (Patrick will dance, I will...clap enthusiastically. I'm a little too weak still to be doing any dancing. Also: neuropathy.)
We pray earnestly that no new tumors will have become evident since the previous scan.
We shall see.
I am not keen to go back, honestly. My strength is improving ever-so-slowly, but it is nowhere near what it needs to be for me to exist "as usual" (pre-treatment). Secretly, I am afraid they might kidnap me and keep me in the hospital for another month. ack! ack! ack!
No. That won't happen. I mean...wait! No, I'm just imagining things.
Monday, August 3, 2015
Final Day!
Early on Tuesday morning, I wrote a good-bye message on the dry-erase board, gathered up the two photos of my kids that I kept in my room, and collected the greeting cards that filled the window sill. I hurriedly ditched the hospital gown and robe, and put on street clothes for the first time in twenty-four days. I then opened my laptop and settled into the chair next to the bed to review some information about Our Lady of Guadalupe in the silence of the room. My husband was stuck in traffic on the beltway, but thought he would make our 9:00AM departure time. I expected my immunotherapy fellow, and the attending physician to arrive for (my final!) morning rounds within the next few minutes.
As the doctors and many others entered the room, they filtered to the very back of the room where I sat. I had just made a connection between my K-Ras mutation, the date I was confirmed "terminal", and the Feast Day of Our Lady of Guadalupe (one of the many titles given to Mary, Mother of Jesus). "That is so cool!" I exclaimed, mostly to myself. Then I asked the flock in general, "My mutation was on codon 12, G12D...is that correct?" Someone agreed that that was accurate. "Amazing! This is amazing! Twelve-twelve!!!" I said, crazy-happy and probably sounding like a lunatic.
Me, addressing the flock: Do you know who 'Our Lady of Guadalupe' is? Anybody? Juan Diego?
Flock: < crickets >
The Guy: Our Lady of...?
Me: Guadalupe
The Guy: Our Lady of Guadalupe. No. Never heard of that. And what is the significance of twelve-twelve?
Then he walked around my chair, so that he could see my laptop screen, which displayed a photo of the image that miraculously appeared on Juan Diego's tilma in 1531.
Me: This is an image of Mary, the Mother of Jesus. This image appeared on a peasant man's tilma, which is a cloak-thing. Science has no explanation for how it came to be there, or why it is still there, unchanged to this day. The miracle that happened in Mexico is the reason millions of people converted to Catholicism.
The doctors sort of stared, not knowing, I guess, what to make of my sudden evangelistic outburst.
I continued: "On December 12, I was confirmed terminal. That is also the feast day of Our Lady of Guadalupe--commemorating Dec. 12, the day the image appeared..." (Backstory: Just prior to that surgery I had asked for Our Lady's protection under her title "Our Lady of Guadalupe" since the surgery was to happen on that feast day. I trusted that whatever the outcome, the Blessed Mother would help me.)
Someone from the flock quipped, "She's really Catholic."
The Guy said, "Well. Whatever you're doing, keep it up! We can use all the help we can get!"
Me: Hey, I need a photo.
Attending: <moves out of the frame, joining me at the window sill>
Me: After all I've done for you? You can pose for a picture for me.
Attending: <rejoins the crowd>
The Guy: Usually it's the other way around. Patients normally tell us what we've done for them.
Me: Normal? Who me? <click> (I cannot express how difficult it was for me to raise BOTH arms above my head to take this photo. Sadly, it was really blurry, so I had to try again. The second one was also terribly blurry, but I could not physically try again. I had no energy for such a feat.)
Attending: Don't leave before I say good-bye.
Me: Don't wait to say good-bye until after 9:00, because I will be gone.
We said our good-byes, and they all filtered out. Except one. One of the not-my-attending docs hung back and said, "Don't forget a towel."
Me: Hmm?
Not Attending Doc: I didn't catch the Mary reference, but the one on the board--that one I got.
On the board I had written:
So long, and thanks for all the fish!
<heart>
Celine
I knew that a life-changing event was just now entering a new phase, but all I could think of at that moment was getting home. There would be ample time for reflecting on it all, later. Patrick arrived just moments after the flock left.
Patrick arrived moments after everyone left. He packed me into the car and pulled out of the NIH parking lot at 8:58AM.
As the doctors and many others entered the room, they filtered to the very back of the room where I sat. I had just made a connection between my K-Ras mutation, the date I was confirmed "terminal", and the Feast Day of Our Lady of Guadalupe (one of the many titles given to Mary, Mother of Jesus). "That is so cool!" I exclaimed, mostly to myself. Then I asked the flock in general, "My mutation was on codon 12, G12D...is that correct?" Someone agreed that that was accurate. "Amazing! This is amazing! Twelve-twelve!!!" I said, crazy-happy and probably sounding like a lunatic.
Me, addressing the flock: Do you know who 'Our Lady of Guadalupe' is? Anybody? Juan Diego?
Flock: < crickets >
The Guy: Our Lady of...?
Me: Guadalupe
The Guy: Our Lady of Guadalupe. No. Never heard of that. And what is the significance of twelve-twelve?
Then he walked around my chair, so that he could see my laptop screen, which displayed a photo of the image that miraculously appeared on Juan Diego's tilma in 1531.
Me: This is an image of Mary, the Mother of Jesus. This image appeared on a peasant man's tilma, which is a cloak-thing. Science has no explanation for how it came to be there, or why it is still there, unchanged to this day. The miracle that happened in Mexico is the reason millions of people converted to Catholicism.
The doctors sort of stared, not knowing, I guess, what to make of my sudden evangelistic outburst.
I continued: "On December 12, I was confirmed terminal. That is also the feast day of Our Lady of Guadalupe--commemorating Dec. 12, the day the image appeared..." (Backstory: Just prior to that surgery I had asked for Our Lady's protection under her title "Our Lady of Guadalupe" since the surgery was to happen on that feast day. I trusted that whatever the outcome, the Blessed Mother would help me.)
Someone from the flock quipped, "She's really Catholic."
The Guy said, "Well. Whatever you're doing, keep it up! We can use all the help we can get!"
Me: Hey, I need a photo.
Attending: <moves out of the frame, joining me at the window sill>
Me: After all I've done for you? You can pose for a picture for me.
Attending: <rejoins the crowd>
The Guy: Usually it's the other way around. Patients normally tell us what we've done for them.
Me: Normal? Who me? <click> (I cannot express how difficult it was for me to raise BOTH arms above my head to take this photo. Sadly, it was really blurry, so I had to try again. The second one was also terribly blurry, but I could not physically try again. I had no energy for such a feat.)
Attending: Don't leave before I say good-bye.
Me: Don't wait to say good-bye until after 9:00, because I will be gone.
We said our good-byes, and they all filtered out. Except one. One of the not-my-attending docs hung back and said, "Don't forget a towel."
Me: Hmm?
Not Attending Doc: I didn't catch the Mary reference, but the one on the board--that one I got.
On the board I had written:
So long, and thanks for all the fish!
<heart>
Celine
I knew that a life-changing event was just now entering a new phase, but all I could think of at that moment was getting home. There would be ample time for reflecting on it all, later. Patrick arrived just moments after the flock left.
Patrick arrived moments after everyone left. He packed me into the car and pulled out of the NIH parking lot at 8:58AM.
Friday, July 31, 2015
Day 12 post-cells: Good-Bye H.catheter!
By Monday, my absolute neutrophil count had jumped to 8,000. I was no longer neutropenic, and many of the routine tests that had been happening for the past week were eliminated. My nurse that day made it her business to ensure that visitors to my room were kept to a minimum. She even banished the housekeeping staff!
Sleep evaded me in the hospital. I had been getting no more than two or three hours each night. Sometimes, I'd doze off during the day, but mostly I was just wired. I felt as though I was trapped inside my own body. I was incredibly weak--so weak that I was barely able to trim my nails! (Squeezing those clippers was hard work.) Who could be that weak? It was ridiculous. Each time I took a shower, I would barely make it back to the bed before passing out. I saw stars, and became nauseous.
Still, I was happy that I would be going home soon! Whenever a doctor or nurse came by, I begged for them to tell me whether they would remove the Hickman catheter before sending me home. They wanted to leave it in place to make apheresis at the six-week follow-up appointment easier, but given my sensitive skin, keeping it would've meant daily (normally this would be done only weekly) flushing of the lumens, scrubbing the skin around the wound, and re-dressing. Showers meant extra care and time to secure the lumens and cover them with a huge, transparent dressing (which made my skin itch). I felt that I had good reasons for wanting it removed, but no staff member would give me the slightest inkling about whether my request would be granted. These people are too well-trained.
Finally, on Monday, my fellow sent the Vein Ladies to my room to assess whether or not apheresis could be done using my veins instead of the catheter. Two apheresis nurses appeared at my door that morning; they were the same nurses that had performed the 5-1/2 hour procedure back in April. Each one chose an arm, and they noted the needle marks from April's procedure. After several long minutes of consideration, they gave me the green light! I would not need the Hickman catheter any longer.
Much rejoicing!
Later that same day, my immunotherapy fellow arrived with a pile of equipment. He made a point of showing me the scalpel (ack!) and much to my surprise, he remembered something I had told him days prior about suffering ("...a little suffering never hurt anybody"). He took this opportunity to find out if I was serious about that statement.
Him: So. That thing you said about suffering. You won't be wanting the lidocaine, then?
Me: Hm. How much will it hurt?
Him: It'll hurt. You're getting the lidocaine.
Me: OK then.
He arranged the equipment and injected lidocaine in a couple of places. I think. I wasn't looking. Needle jabs! ack!
Me: Just don't tell me what you're doing. I don't want to know.
Him: OK, turn your head. Right now, I'm injecting the lidocaine, and I'm going to snip these sutures. Oh, look at that! Blood is spurting out...I'll have to mop that up...
Me: What? No! I don't want to hear that stuff. Are you trying to make me pass out?
Him: If you pass out, it makes my job even easier.
Me: You're terrible.
Him: Yeah, so now I'm trying to determine if the cuff had sufficient time to get anchored...I may need to cut the flesh around it to loosen it.
Me [in my head]: stop! stop! stop! I wish I could run away! ack!
Him: Oh. Ha. Look at that. It came right out. We're done.
Me: What? We're done?!
Him [turning to dispose of the long, gangly, catheter parts]: Yeah, you wanna see it?
Me: No, I don't want to see it! GAHHHHHHHH...why would I want to see that?!
Him: OK then. I just have to hold pressure on the wound for a while.
Me [in my head]: My opportunity! bwhahahaaa...
I will not reveal the discussion that ensued, but just imagine that I channeled the good doctor's most annoying and prying relative. I peppered him with inappropriate question after inappropriate question, only stopping when a nurse joined us (darn!). He was stuck holding pressure, and I was relentless in my pursuit to tell him how to live his life.
Sorry, doc. It was all in good fun. A little suffering never hurt anybody.
Sleep evaded me in the hospital. I had been getting no more than two or three hours each night. Sometimes, I'd doze off during the day, but mostly I was just wired. I felt as though I was trapped inside my own body. I was incredibly weak--so weak that I was barely able to trim my nails! (Squeezing those clippers was hard work.) Who could be that weak? It was ridiculous. Each time I took a shower, I would barely make it back to the bed before passing out. I saw stars, and became nauseous.
Still, I was happy that I would be going home soon! Whenever a doctor or nurse came by, I begged for them to tell me whether they would remove the Hickman catheter before sending me home. They wanted to leave it in place to make apheresis at the six-week follow-up appointment easier, but given my sensitive skin, keeping it would've meant daily (normally this would be done only weekly) flushing of the lumens, scrubbing the skin around the wound, and re-dressing. Showers meant extra care and time to secure the lumens and cover them with a huge, transparent dressing (which made my skin itch). I felt that I had good reasons for wanting it removed, but no staff member would give me the slightest inkling about whether my request would be granted. These people are too well-trained.
Finally, on Monday, my fellow sent the Vein Ladies to my room to assess whether or not apheresis could be done using my veins instead of the catheter. Two apheresis nurses appeared at my door that morning; they were the same nurses that had performed the 5-1/2 hour procedure back in April. Each one chose an arm, and they noted the needle marks from April's procedure. After several long minutes of consideration, they gave me the green light! I would not need the Hickman catheter any longer.
Much rejoicing!
Later that same day, my immunotherapy fellow arrived with a pile of equipment. He made a point of showing me the scalpel (ack!) and much to my surprise, he remembered something I had told him days prior about suffering ("...a little suffering never hurt anybody"). He took this opportunity to find out if I was serious about that statement.
Him: So. That thing you said about suffering. You won't be wanting the lidocaine, then?
Me: Hm. How much will it hurt?
Him: It'll hurt. You're getting the lidocaine.
Me: OK then.
He arranged the equipment and injected lidocaine in a couple of places. I think. I wasn't looking. Needle jabs! ack!
Me: Just don't tell me what you're doing. I don't want to know.
Him: OK, turn your head. Right now, I'm injecting the lidocaine, and I'm going to snip these sutures. Oh, look at that! Blood is spurting out...I'll have to mop that up...
Me: What? No! I don't want to hear that stuff. Are you trying to make me pass out?
Him: If you pass out, it makes my job even easier.
Me: You're terrible.
Him: Yeah, so now I'm trying to determine if the cuff had sufficient time to get anchored...I may need to cut the flesh around it to loosen it.
Me [in my head]: stop! stop! stop! I wish I could run away! ack!
Him: Oh. Ha. Look at that. It came right out. We're done.
Me: What? We're done?!
Him [turning to dispose of the long, gangly, catheter parts]: Yeah, you wanna see it?
Me: No, I don't want to see it! GAHHHHHHHH...why would I want to see that?!
Him: OK then. I just have to hold pressure on the wound for a while.
Me [in my head]: My opportunity! bwhahahaaa...
I will not reveal the discussion that ensued, but just imagine that I channeled the good doctor's most annoying and prying relative. I peppered him with inappropriate question after inappropriate question, only stopping when a nurse joined us (darn!). He was stuck holding pressure, and I was relentless in my pursuit to tell him how to live his life.
Sorry, doc. It was all in good fun. A little suffering never hurt anybody.
Thursday, July 30, 2015
Sleen's K-Ras Mutation
What follows is a mash-up of what I learned from the book, "The Emperor of All Maladies," from discussions with my immunotherapy fellow at NIH, and from email correspondence with my new cyber-pal, known as DK37*.
K-Ras is considered an oncogene (a gene that can cause cancer). Colon cancer patients' DNA is typically checked in the earliest days after diagnosis to determine whether the patient is "K-Ras wild-type", or "K-Ras mutated". I was found to be K-Ras mutated back in September, 2013 after my initial surgery. I didn't know much about it at the time, except for the fact that certain drugs that have been found to be effective for "wild-type", would do nothing for me.
As part of the clinical trial at NIH, exomic sequencing was done, which identified my tumors' specific mutations. The researchers found over sixty mutations, but one stood out as particularly interesting to them. It was a mutation in the K-Ras gene. It is referenced this way: codon 12 G12D, and I was told that it is one of the most-common mutations in colorectal cancer (CRC). This designator is explained (ha, sort of) as: On the 12th codon, the twelfth amino acid "G" (glycine) has been replaced by "D" (aspartic acid). "D replacing G"--that is the mutation.
Glycine, I was told, is a small, uncharged amino acid. Aspartic acid, on the other hand, is large and carries a negative charge (the charge is due to a carboxylic acid side-chain, according to my friend the medicinal chemist). Anyway, the negative charge blocks a cell's normal "stop dividing" instruction. The cell's "off switch" is effectively ignored, and so growth continues unchecked, forming tumors that grow without ceasing.
Fortunately for me, the tumors in my lungs have grown very slowly. I would like to think that this is because I have been producing large numbers of tumor infiltrating lymphocytes (TILs) all along, but I have no way of knowing. The aim of the clinical trial is to find TILs that are already working to remove cancerous cells in the patient, to multiply those, and to return them to the patient. "Building up the army", is how many people think of it.
The researchers had success in the lab! They discovered TILs in the harvested lung tumors that recognize the mutation in the K-Ras gene and are "reactive" to it. If the 148-billion TILs they returned to me on July 1 are as effective in me as they were in the lab, we should expect to see shrinkage of my lung tumors by 12-weeks post-cells. This is my great hope! Alas, there are no guarantees.
* Super Genius
K-Ras is considered an oncogene (a gene that can cause cancer). Colon cancer patients' DNA is typically checked in the earliest days after diagnosis to determine whether the patient is "K-Ras wild-type", or "K-Ras mutated". I was found to be K-Ras mutated back in September, 2013 after my initial surgery. I didn't know much about it at the time, except for the fact that certain drugs that have been found to be effective for "wild-type", would do nothing for me.
As part of the clinical trial at NIH, exomic sequencing was done, which identified my tumors' specific mutations. The researchers found over sixty mutations, but one stood out as particularly interesting to them. It was a mutation in the K-Ras gene. It is referenced this way: codon 12 G12D, and I was told that it is one of the most-common mutations in colorectal cancer (CRC). This designator is explained (ha, sort of) as: On the 12th codon, the twelfth amino acid "G" (glycine) has been replaced by "D" (aspartic acid). "D replacing G"--that is the mutation.
Glycine, I was told, is a small, uncharged amino acid. Aspartic acid, on the other hand, is large and carries a negative charge (the charge is due to a carboxylic acid side-chain, according to my friend the medicinal chemist). Anyway, the negative charge blocks a cell's normal "stop dividing" instruction. The cell's "off switch" is effectively ignored, and so growth continues unchecked, forming tumors that grow without ceasing.
Fortunately for me, the tumors in my lungs have grown very slowly. I would like to think that this is because I have been producing large numbers of tumor infiltrating lymphocytes (TILs) all along, but I have no way of knowing. The aim of the clinical trial is to find TILs that are already working to remove cancerous cells in the patient, to multiply those, and to return them to the patient. "Building up the army", is how many people think of it.
The researchers had success in the lab! They discovered TILs in the harvested lung tumors that recognize the mutation in the K-Ras gene and are "reactive" to it. If the 148-billion TILs they returned to me on July 1 are as effective in me as they were in the lab, we should expect to see shrinkage of my lung tumors by 12-weeks post-cells. This is my great hope! Alas, there are no guarantees.
* Super Genius
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