Read Part 1 here.
Tuesday morning we got up bright and early to hopefully attend Mass at the National Shrine, which the website listed as happening at 7:30AM. Unfortunately, when we got there, all of the entrances were blocked off. We guessed it had something to do with Pope Francis' impending visit, but I can't say for sure. The website says the shrine is open 365 days, so...hmmm.
We headed over to NIH to grab a coffee from Au Bon Pain (it may be French, but I think the letters p-a-i-n should be stricken from all signage at a hospital). We sat in the open dining area on the ground floor, waiting for my CT images to be copied to CD.
We got our hands on the disk at 11:00 a.m. and headed to the Business Center to investigate. The radiologist's report, which had been so encouraging last time, gave no new information this time. My impression of it was, "Patient has a bunch of lung nodules. Other organs OK." The report contained no mention of the clinical trial at all.
Patrick loaded the images onto the computer and began measuring lung tumors while I compared his findings to the previous scan's data. We had hoped that this time we might have trouble finding some of the smaller tumors because they had disappeared, but no. They were all still there.
Some tumors, especially in the right lung, measured smaller this time. Tumors in the left lung were a little harder to pin down, but it looked like there had been some shrinkage there, too. RECIST criteria, which is what the researchers adhere to, dictate that the measurement is to be taken along the tumor's longest axis.
I was expecting to see big changes, like the ones we saw during the first follow-up, and so I was not sure what to make of the data we were gleaning. I was glad that it was almost time to meet my doctor so that I could get his take on the situation. To be honest, I went into the clinic feeling like a kicked puppy.
A nurse took my vitals, and weight, and showed us to an exam room. Upon the doc's arrival, he brought us out to the hallway, to a giant computer monitor. He pulled up three sets of images, one from March (prior to treatment), one from August (first follow-up) and the set from the previous day. He showed us how the target tumors (four of the seven tumors are considered "targets" for the purposes of the study) were measured. He confirmed that the tumors had decreased in size since the prior scans.
Back in the room, it wasn't sinking in. My concern was that the rate of decrease had apparently slowed down. It seemed like a bad sign. The doc said that "everyone in this whole department is happy about these scans, except for, apparently you..." He said that the tumors are at 25% reduction. We talked about the difference between the first set of scans and this one. Ever-so-slowly I was able to agree that what he was telling me was good news.
An attending physician joined us later, and happened to notice the plotting of data points related to the tumors' sizes that Patrick and I have done. I explained my tumor-naming convention (which I admit is a little "out there"). At that point my doc commented on the "Nerd Level" in the room. hahaha... When the attending physician asked, "Just what kind of engineers are you?" My doctor piped up, "Circus. They are circus engineers."
Good one, Doc.
Later, The Guy (principle investigator) visited us in the exam room. He said things like, "We could not have expected results any better than what we've seen." He was smiling. A lot.
Whoa...what?!
They want more scans in a month. I'll be there.
Friday, September 18, 2015
Second Follow-Up part 1: Monday Testing
On Monday, Patrick and I drove once again to the National Institutes of Health (NIH) in Bethesda. This time, we arrived more than an hour early and discovered that appointment times for the phlebotomy department are more like suggestions. I checked in over an hour early, was given a plastic ID bracelet, and a deli-style ticket. I was told to watch the wall-mounted monitor for my number to come up, which it did just a few minutes later.
I was ushered to "cubicle number one" where an older man kept repeating to himself and any passers-by (and there were many passers-by) that he had "Celine Dion" in his chair. Confused workers would peek around the corner to see what the guy was talking about, only to find non-celebrity me sitting in the chair. Extreme eye-rolling (mine) ensued. The fibbing phlebotomist filled twelve tubes with my non-celebrity blood, then sent me off for a urine sample while he affixed printed labels to all of the samples. "Good-bye Miss Celine Dion," he sang as I dashed out of his cubicle.
My next appointment, a CT scan, was scheduled for a couple of hours later, but we had had such great luck with getting into phlebotomy early, that we decided to try it again with the scanning department. We had the opposite of luck with them, and so we found ourselves with a couple of hours to wait.
Me: Bummer. Now what should we do?
Patrick: Let's go say, "Hi," to < someone on 3NW >
Me: OK
Off we went to the third floor. To my great surprise, my favorite nurse was there, off-duty. We squealed like teenagers (or maybe it was just me, ha) at our reunion. Three of the doctors who took care of me during the treatment were also there, so it was Big Fun for me to see them all again.
Next, a trip to the lab where Science lives. The Lab Guru gave us a fabulous tour of the various work-areas, even showing us the freezer where my very own T-cells are suspended in chilly, darkened, frozen-ness. Of course, I waved and greeted them with, "Hi guys!" The Lab Guru was very generous with his time, and thorough in his explanations, and always willing to answer our (many!) questions. Amazing things happen in that place!
Back to the Imaging for my first scan. I had to drink 800 ml of contrast (iohexol), then change into disposable scrubs. To my delight, there was no delay this time; as soon as I exited the changing area, my name was called. Soon after that I was sporting an I.V. in my left arm. The scan was uneventful, and when I finished, the tech brought me to a door at the back of the room that led to my next destination: MRI. The tech thought it might be possible that I'd get in ahead of schedule.
Earlier in the day I was informed that my appointment time would be moved up two hours--hurray! Now I appeared before the MRI receptionist with I.V. already placed, and donning the requisite scrubs, and asked if there was any chance they could take me early. "There is a chance," she said, "depending on how scanner number six goes."
I sat down in the waiting area and texted Patrick my whereabouts. He left then, to check into the hotel. We expected this scan to take almost two hours since I was scheduled for scans of both the brain and the abdomen. (Every-other visit the MRI scan will include images of the brain, otherwise, it's just the abdomen.)
I wasn't able to get in early but it was much better than my experience last time, when they were behind schedule. The tech greeted me, and relieved me of my security badge, and my locker key. I passed the "spin test" and he informed me that the scan would take, "about an hour".
Me: About an hour? Really?! Last time it was close to two hours.
Him: Yeah, well. We're not messing around. It'll be like...an hour.
Me: Woo! That is good news. I am starving.
Him: Oh, you could've had something light.
Me: I what?! ...the paperwork said to fast for four hours. Which fell during the time of my CT scan, for which I also had to fast for four hours. Fasting makes me crabby!
Him: Yeah, well. Sometimes a full stomach can block some of the anatomy they're trying to see. Also, some people get sick from the contrast and we were having to clean up some awfully big messes in here.
Me: I see. OK. Well. That's gross.
Onto the moveable bed-thingy I went. The tech took my glasses, gave me some earplugs, and strapped what he called "coils" over me. These coils are housed inside a piece of rigid plastic that (sort of) conforms to the shape of the body--each housing is curved, at any rate. The contraption is about the size of a pillow case, but sort of grid-like, with "rungs", and open areas. These were connected to the table by long Velcro straps. One was strapped over my chest, and another across my abdomen. He connected a long tube to the I.V. in my arm, placed headphones on me, and lowered a cage (another set of coils, I'm guessing) over my face. He gave me a squeeze ball which I could use to request that the test be stopped "for any reason". Finally, he did something no other MRI tech had ever done. He flipped down a little mirror from somewhere over my head inside the machine, which allowed me to see a part of the wall behind me. For some reason, the idea of the TARDIS entered my brain then, but even with my expanded field of vision, I could not describe the MRI machine as "bigger on the inside".
The test concluded in something like 80 minutes. This meant that I could find food sooner than I expected! I quickly texted Patrick that I was finished, and changed out of the scrubs and into my own clothes.
The building was mostly silent, as almost all of the workers had gone home long beforehand. It was about 8:00 PM. I wandered around, looking for the main entrance (I am so bad about navigating!!!) and finally found the revolving door where I waited for my dear husband to arrive.
We found a steakhouse and then settled into our hotel. The next day we'd find out what--if anything--had happened to the tumors in my lungs.
part 2 here
I was ushered to "cubicle number one" where an older man kept repeating to himself and any passers-by (and there were many passers-by) that he had "Celine Dion" in his chair. Confused workers would peek around the corner to see what the guy was talking about, only to find non-celebrity me sitting in the chair. Extreme eye-rolling (mine) ensued. The fibbing phlebotomist filled twelve tubes with my non-celebrity blood, then sent me off for a urine sample while he affixed printed labels to all of the samples. "Good-bye Miss Celine Dion," he sang as I dashed out of his cubicle.
My next appointment, a CT scan, was scheduled for a couple of hours later, but we had had such great luck with getting into phlebotomy early, that we decided to try it again with the scanning department. We had the opposite of luck with them, and so we found ourselves with a couple of hours to wait.
Me: Bummer. Now what should we do?
Patrick: Let's go say, "Hi," to < someone on 3NW >
Me: OK
Off we went to the third floor. To my great surprise, my favorite nurse was there, off-duty. We squealed like teenagers (or maybe it was just me, ha) at our reunion. Three of the doctors who took care of me during the treatment were also there, so it was Big Fun for me to see them all again.
Next, a trip to the lab where Science lives. The Lab Guru gave us a fabulous tour of the various work-areas, even showing us the freezer where my very own T-cells are suspended in chilly, darkened, frozen-ness. Of course, I waved and greeted them with, "Hi guys!" The Lab Guru was very generous with his time, and thorough in his explanations, and always willing to answer our (many!) questions. Amazing things happen in that place!
Back to the Imaging for my first scan. I had to drink 800 ml of contrast (iohexol), then change into disposable scrubs. To my delight, there was no delay this time; as soon as I exited the changing area, my name was called. Soon after that I was sporting an I.V. in my left arm. The scan was uneventful, and when I finished, the tech brought me to a door at the back of the room that led to my next destination: MRI. The tech thought it might be possible that I'd get in ahead of schedule.
Earlier in the day I was informed that my appointment time would be moved up two hours--hurray! Now I appeared before the MRI receptionist with I.V. already placed, and donning the requisite scrubs, and asked if there was any chance they could take me early. "There is a chance," she said, "depending on how scanner number six goes."
I sat down in the waiting area and texted Patrick my whereabouts. He left then, to check into the hotel. We expected this scan to take almost two hours since I was scheduled for scans of both the brain and the abdomen. (Every-other visit the MRI scan will include images of the brain, otherwise, it's just the abdomen.)
I wasn't able to get in early but it was much better than my experience last time, when they were behind schedule. The tech greeted me, and relieved me of my security badge, and my locker key. I passed the "spin test" and he informed me that the scan would take, "about an hour".
Me: About an hour? Really?! Last time it was close to two hours.
Him: Yeah, well. We're not messing around. It'll be like...an hour.
Me: Woo! That is good news. I am starving.
Him: Oh, you could've had something light.
Me: I what?! ...the paperwork said to fast for four hours. Which fell during the time of my CT scan, for which I also had to fast for four hours. Fasting makes me crabby!
Him: Yeah, well. Sometimes a full stomach can block some of the anatomy they're trying to see. Also, some people get sick from the contrast and we were having to clean up some awfully big messes in here.
Me: I see. OK. Well. That's gross.
Onto the moveable bed-thingy I went. The tech took my glasses, gave me some earplugs, and strapped what he called "coils" over me. These coils are housed inside a piece of rigid plastic that (sort of) conforms to the shape of the body--each housing is curved, at any rate. The contraption is about the size of a pillow case, but sort of grid-like, with "rungs", and open areas. These were connected to the table by long Velcro straps. One was strapped over my chest, and another across my abdomen. He connected a long tube to the I.V. in my arm, placed headphones on me, and lowered a cage (another set of coils, I'm guessing) over my face. He gave me a squeeze ball which I could use to request that the test be stopped "for any reason". Finally, he did something no other MRI tech had ever done. He flipped down a little mirror from somewhere over my head inside the machine, which allowed me to see a part of the wall behind me. For some reason, the idea of the TARDIS entered my brain then, but even with my expanded field of vision, I could not describe the MRI machine as "bigger on the inside".
The test concluded in something like 80 minutes. This meant that I could find food sooner than I expected! I quickly texted Patrick that I was finished, and changed out of the scrubs and into my own clothes.
The building was mostly silent, as almost all of the workers had gone home long beforehand. It was about 8:00 PM. I wandered around, looking for the main entrance (I am so bad about navigating!!!) and finally found the revolving door where I waited for my dear husband to arrive.
We found a steakhouse and then settled into our hotel. The next day we'd find out what--if anything--had happened to the tumors in my lungs.
part 2 here
Thursday, September 3, 2015
Clinical Trial Resources
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
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, 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.
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