I'm living too much "in my head" these days, thinking back to where I was a year ago. Saturday (12/12) will be the first anniversary of the day the cancer was confirmed metastatic. The medical world had a new term for my condition, terminal.
I think a flashback to my visit with the ophthalmologist during chemo two years ago is in order. It was a crazy time that I don't want to re-live, but it shows that even in chemotherapy treatment, there was a lot to laugh at if you looked for it.
It is mind-boggling to think of myself going from a diagnosis of "terminal disease" to the brink of "partial response to TIL therapy" in the space of a year. Craziness! Some describe cancer as a journey. For me it has been a riot--ludicrous in a way, but dreadfully serious in another. What to make of it? I have no idea! I just hope that I can help someone else along the way. I think that's the overarching goal of every human life: service.
Speaking of helping...
Update on the TIL trial. NIH has added what is referred to as a "check-point inhibitor"* (an anti-PD-1 antibody) to the protocol. Pembrolizumab will now be given to patients who are enrolled on this trial in addition to tumor-infiltrating lymphocytes (TIL). See the updated trial description here. Note: I have not, and will not receive pembrolizumab. My treatment phase is over; I'm now in the monitoring phase.
*My friend, Tom†, wrote an excellent article describing check-point inhibitors in Part 1 of his Fight CRC article. See Part 2 for more on immunotherapy.
†super genius
Thursday, December 10, 2015
Wednesday, November 25, 2015
Follow-Up #4 Results
Meet the tumor my doctors call "Target 3". I call it "José". This a CT image of an inoperable, cancerous lung tumor. It is much too close to my heart. (That blobby-looking thing just beneath the blue oval is a normal blood vessel, and the massive thing in the upper left is my heart.)
The first image shows how Target 3 appeared in June, 2015, prior to the TIL immunotherapy trial. At that time, it measured about 3 cm from end to end. RECIST criteria is concerned with only the measurement of the longest dimension, which hasn't changed much in five months, however, it's plain to see that the tumor is starting to change. The TIL are still doing their job!
disintegrating tumors = most grateful patient!
Officially, I'm now at 30% reduction from baseline. If next visit we see similar results, I'll enter the world of "partial responder" (PR). Can't wait!
Happy Thanksgiving!!!
Friday, November 20, 2015
Scanning Time Again
Scans during Thanksgiving week? Yes. I scheduled that.
Last time, the oral contrast did a number on me, and so now I worry that it will happen again. I asked my doc if he would let me skip this unpleasantness at the upcoming visit, but he rejected the idea. I wonder if his opinion could be swayed by 50-pounds of Halloween candy.
hmm...
Last time I was this close > < to achieving "partial response" by RECIST criteria. I don't know what it takes to make lung tumors shrink, but I vowed to walk daily until my return to Bethesda, in an effort to boost my immune system. It hurts my feet (neuropathy) but I do it anyway. Maybe walking will kill off some of the damaged nerves for good. ha.
Other news! An article about the TIL therapy has been published in Science*. This one made me realize just how incredibly basic my understanding is. When I think I know something, I learn another something that makes the first revelation miniscule in comparison. Still, what I do understand fascinates me. It must be a very exciting time to be a cancer researcher--it seems like they are on the brink of unlocking cancer's final secrets.
Since my last post here, I got to speak to the lovely Melinda on the phone. Hers is the case that rocked the world of immunology a couple of years ago. I read an article about her case before I knew my own was metastatic, and it is because of the publicity surrounding her that I found the trial at NIH. She is now two years out from the same treatment I received, and doing great as a "partial responder".
Next up: Results. Prayers for good news are gratefully accepted! If swinging chickens is more your style, I'll take that, too. It's all good.
*the KRAS patient referred to is not me. This data was collected prior to my treatment.
Last time, the oral contrast did a number on me, and so now I worry that it will happen again. I asked my doc if he would let me skip this unpleasantness at the upcoming visit, but he rejected the idea. I wonder if his opinion could be swayed by 50-pounds of Halloween candy.
hmm...
Last time I was this close > < to achieving "partial response" by RECIST criteria. I don't know what it takes to make lung tumors shrink, but I vowed to walk daily until my return to Bethesda, in an effort to boost my immune system. It hurts my feet (neuropathy) but I do it anyway. Maybe walking will kill off some of the damaged nerves for good. ha.
Other news! An article about the TIL therapy has been published in Science*. This one made me realize just how incredibly basic my understanding is. When I think I know something, I learn another something that makes the first revelation miniscule in comparison. Still, what I do understand fascinates me. It must be a very exciting time to be a cancer researcher--it seems like they are on the brink of unlocking cancer's final secrets.
Since my last post here, I got to speak to the lovely Melinda on the phone. Hers is the case that rocked the world of immunology a couple of years ago. I read an article about her case before I knew my own was metastatic, and it is because of the publicity surrounding her that I found the trial at NIH. She is now two years out from the same treatment I received, and doing great as a "partial responder".
Next up: Results. Prayers for good news are gratefully accepted! If swinging chickens is more your style, I'll take that, too. It's all good.
*the KRAS patient referred to is not me. This data was collected prior to my treatment.
Sunday, October 25, 2015
Third Follow-Up at NIH
My scans this time showed some shrinkage. By RECIST criteria, wherein the longest axis (only) is measured, my fellow arrived at a value of 2% reduction from last month's measurements. This puts me at 27% reduction compared to baseline. "Partial Response (PR)" begins at 30%, so I have a little bit to go to reach that benchmark.
What was most encouraging was to see how one of the biggest and least-resectable tumors appears now. On the CT scan, it looks like a hole is developing right through the middle of it! In reality, it isn't an actual hole; certainly it is less dense in the middle. Its longest dimension remains the same, however, so this is an example of where RECIST criteria falls short. Measuring only the longest diameters fails to capture the sort of disintegration that is obviously happening.
More worrisome for me was the fact that one tumor showed "hot" on the PET scan. I asked about scar tissue (it is very close to the staple-line remaining from April's lung wedge surgery), but the doc is confident that it glowed because of cancer, and not scar tissue (and not due to TIL infiltration either). I had hoped the PET would show the lungs dark, indicating that the tumors are all necrotic now, but that is not the case. Soon! Maybe soon the cancer will all die.
No new lesions were identified, thank God.
Since I didn't reach Partial Response (I was 2mm short by my husband's reckoning) I will return in November for the next follow-up.
Two millimeters! The length of a mustard seed*. Like last time.
Here is a link to a presentation that Dr. Rosenberg gave, where he mentions my case (he is the second speaker on this video). Here is a talk that he gave a few months earlier.
*Matthew 17:20: "...if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”
What was most encouraging was to see how one of the biggest and least-resectable tumors appears now. On the CT scan, it looks like a hole is developing right through the middle of it! In reality, it isn't an actual hole; certainly it is less dense in the middle. Its longest dimension remains the same, however, so this is an example of where RECIST criteria falls short. Measuring only the longest diameters fails to capture the sort of disintegration that is obviously happening.
More worrisome for me was the fact that one tumor showed "hot" on the PET scan. I asked about scar tissue (it is very close to the staple-line remaining from April's lung wedge surgery), but the doc is confident that it glowed because of cancer, and not scar tissue (and not due to TIL infiltration either). I had hoped the PET would show the lungs dark, indicating that the tumors are all necrotic now, but that is not the case. Soon! Maybe soon the cancer will all die.
No new lesions were identified, thank God.
Since I didn't reach Partial Response (I was 2mm short by my husband's reckoning) I will return in November for the next follow-up.
Two millimeters! The length of a mustard seed*. Like last time.
Here is a link to a presentation that Dr. Rosenberg gave, where he mentions my case (he is the second speaker on this video). Here is a talk that he gave a few months earlier.
*Matthew 17:20: "...if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”
Tuesday, October 20, 2015
So Many Scans
Today I ate a horrible zero-carb meal at the hotel's breakfast buffet. I am not a fan of the buffet-style breakfast. Typically when I partake of a hotel's free breakfast, I stick to cold cereal and pre-packaged yogurt. Those were both a no-go today though. My PET scan instructions recommended a high-protein, low-carb diet for 24 hours prior to the scan (plus a 6-hour fast preceding the scan). I was compliant! Well. Except for Brussels sprouts at dinner last night. Not sure how those stacked up carb-wise. They were prepared with bacon though, so at least that part should've met the mark.
I was at the hospital from 8 AM to 8 PM. The hospital is chilly, and I decided to leave my coat in the car so I wouldn't be lugging it around all day. That meant that I was cold and hungry pretty much the whole day, which was kind of a bummer.
First up, blood work. I was given a cubicle number to report to, which was staffed by a man of few words. It was too bad, because he had a really great voice! He didn't smile at all, and he barely spoke. It was a bit uncomfortable in that respect, but to his credit, I didn't even feel the needle go in. Yay, Quiet Guy!
I had to ask about the urine-pregnancy test. Quiet Guy didn't have an order for it. He thought probably if they needed to know, they could get their answer from some of the blood that was just drawn. Knowing how procedure-driven NIH is, I decided to check with radiology. Radiology was quick to call the research nurse who put in an order for a "STAT Urine Pregnancy Test".
Back to the Phlebotomy department I went. NIH is 0 for 4 at ordering a pregnancy test for me w/o a reminder. Why this is not part of the procedure, I do not know. But! Crisis Averted--the test was done in plenty of time to accommodate my first scan.
Next, I was led to a comfy recliner in a tiny little room. Radioactive glucose was shot into my veins and I was cloaked with a blanket straight from the warmer. Being Still was my job for the next 45 minutes. Lights were dimmed, and the door closed.
The scan itself involved no drinking of contrast. That was a welcome surprise. It was over in about 20 minutes.
CT was the next stop, a couple of hours later. Still no food for me, but I did get to drink 900 ml of Iohexal, which is a clear liquid that tastes like contaminated water. I had to laugh when the lady gave me the bottle of contrast solution and said, "And now please enjoy three glasses of this contrast." The word "enjoy" was not one I would use in the same sentence as "contrast". But OK. I had fifteen minutes to down the stuff. I am finding that with each subsequent CT-scan, the drinking of the contrast gets more and more difficult. It must be psychological, but somehow that assumption doesn't make the process even a little bit easier.
Later, an I.V. was placed in my right arm and I was sent to wait. Nausea hit, and I willed myself to not vomit, for fear of the knowledge that I'd be required to drink the dreaded liquid again. That would be hard to endure. It was a close one! Thankfully, the CT went without a hitch and I was out of there in an hour or so. The scan itself was just a few minutes long.
More time went by. Had I felt better, I would've ventured to the third floor to say hello to the nurses and docs. I felt truly yucky though, and chose not to move.
I made it to MRI very early and waited, and waited...I was quite early, so the wait was expected. I was finally led to a machine that was different than any other MRI I've had. It felt a lot like a coffin. I am not an overly large person, but this thing was a tight fit, and not pleasant! I spent forty or so minutes inside the MRI listening to the banging, whirring, dinging, and buzzing of the machine. When the I.V. contrast was pushed, I could taste it, which was a bit horrific. I had never had that experience before. It was not yummy.
Finally, the test was over. I was released from the machine, my I.V. was removed, I donned my own clothes (I had been wearing disposable "scrubs") and I left the hospital in search of FOOD. We went to a steakhouse where I ordered a giant steak, and ate almost all of it. That is probably why I am still awake at nearly 2 AM. ha.
In the morning, my plan is to retrieve a CD of PET and CT images from the Medical Records office to a) see whether anything glows on the PET, and b) take measurements of the lung tumors.
Good news would be that the PET is dark and the tumors have shrunk (or disappeared).
We shall see.
I was at the hospital from 8 AM to 8 PM. The hospital is chilly, and I decided to leave my coat in the car so I wouldn't be lugging it around all day. That meant that I was cold and hungry pretty much the whole day, which was kind of a bummer.
First up, blood work. I was given a cubicle number to report to, which was staffed by a man of few words. It was too bad, because he had a really great voice! He didn't smile at all, and he barely spoke. It was a bit uncomfortable in that respect, but to his credit, I didn't even feel the needle go in. Yay, Quiet Guy!
I had to ask about the urine-pregnancy test. Quiet Guy didn't have an order for it. He thought probably if they needed to know, they could get their answer from some of the blood that was just drawn. Knowing how procedure-driven NIH is, I decided to check with radiology. Radiology was quick to call the research nurse who put in an order for a "STAT Urine Pregnancy Test".
Back to the Phlebotomy department I went. NIH is 0 for 4 at ordering a pregnancy test for me w/o a reminder. Why this is not part of the procedure, I do not know. But! Crisis Averted--the test was done in plenty of time to accommodate my first scan.
Next, I was led to a comfy recliner in a tiny little room. Radioactive glucose was shot into my veins and I was cloaked with a blanket straight from the warmer. Being Still was my job for the next 45 minutes. Lights were dimmed, and the door closed.
The scan itself involved no drinking of contrast. That was a welcome surprise. It was over in about 20 minutes.
CT was the next stop, a couple of hours later. Still no food for me, but I did get to drink 900 ml of Iohexal, which is a clear liquid that tastes like contaminated water. I had to laugh when the lady gave me the bottle of contrast solution and said, "And now please enjoy three glasses of this contrast." The word "enjoy" was not one I would use in the same sentence as "contrast". But OK. I had fifteen minutes to down the stuff. I am finding that with each subsequent CT-scan, the drinking of the contrast gets more and more difficult. It must be psychological, but somehow that assumption doesn't make the process even a little bit easier.
Later, an I.V. was placed in my right arm and I was sent to wait. Nausea hit, and I willed myself to not vomit, for fear of the knowledge that I'd be required to drink the dreaded liquid again. That would be hard to endure. It was a close one! Thankfully, the CT went without a hitch and I was out of there in an hour or so. The scan itself was just a few minutes long.
More time went by. Had I felt better, I would've ventured to the third floor to say hello to the nurses and docs. I felt truly yucky though, and chose not to move.
I made it to MRI very early and waited, and waited...I was quite early, so the wait was expected. I was finally led to a machine that was different than any other MRI I've had. It felt a lot like a coffin. I am not an overly large person, but this thing was a tight fit, and not pleasant! I spent forty or so minutes inside the MRI listening to the banging, whirring, dinging, and buzzing of the machine. When the I.V. contrast was pushed, I could taste it, which was a bit horrific. I had never had that experience before. It was not yummy.
Finally, the test was over. I was released from the machine, my I.V. was removed, I donned my own clothes (I had been wearing disposable "scrubs") and I left the hospital in search of FOOD. We went to a steakhouse where I ordered a giant steak, and ate almost all of it. That is probably why I am still awake at nearly 2 AM. ha.
In the morning, my plan is to retrieve a CD of PET and CT images from the Medical Records office to a) see whether anything glows on the PET, and b) take measurements of the lung tumors.
Good news would be that the PET is dark and the tumors have shrunk (or disappeared).
We shall see.
Thursday, October 15, 2015
Anticipating Follow-Up 3 at NIH
In a few days, I will be heading out to Bethesda again.
In store for me: three scans in one day. The PET will require a modified diet for the 24-hours leading up to it. According to the written instructions, I may eat "meat-only sandwiches without bun or bread and without vegetables or other toppings"...so...just "meat", then? I guess? Who writes this stuff, I wonder. Sugar and carbs are a no-go. I will stick with eggs and bacon. Or (to simplify) bacon and more bacon the day prior to the PET.
Fasting will be the name of the game on scan day! Scan 1 (PET) requires 6 hours of fasting prior. Scan 2 (CT) requires 4 hours of fasting. Scan 3 (MRI) requires 4 hours of fasting. That is a lot of fasting in one day. It will mean the downing of extra contrast, too. gack!
Since my last post, I've gotten word on three people in various stages of participating in this same trial. I am filled with hope for each one of them!
If you're a crc patient and wondering, "What is all the fuss about?", watch this in-house lecture given by The Guy himself, in April. He gave a more-recent (but shorter) talk in September (the immunotherapy presentation is the second half of the video). If this approach to curing metastatic cancer interests you, please check out this link. The trial is open to many types of cancer--go look!
Life these days is sweet. Chemotherapy started for me in October two years ago. Since that time I've never been able to walk more than about two miles at once mainly due to neuropathy in my feet/legs (a side-effect of oxaliplatin). Yesterday though, I was able to go further! I went 3.7 miles, and today I managed 3 miles (over some wicked hills, too). My energy is back, and the beast of cancer is losing its hideous grip on me.
I am so thankful!
In store for me: three scans in one day. The PET will require a modified diet for the 24-hours leading up to it. According to the written instructions, I may eat "meat-only sandwiches without bun or bread and without vegetables or other toppings"...so...just "meat", then? I guess? Who writes this stuff, I wonder. Sugar and carbs are a no-go. I will stick with eggs and bacon. Or (to simplify) bacon and more bacon the day prior to the PET.
Fasting will be the name of the game on scan day! Scan 1 (PET) requires 6 hours of fasting prior. Scan 2 (CT) requires 4 hours of fasting. Scan 3 (MRI) requires 4 hours of fasting. That is a lot of fasting in one day. It will mean the downing of extra contrast, too. gack!
Since my last post, I've gotten word on three people in various stages of participating in this same trial. I am filled with hope for each one of them!
If you're a crc patient and wondering, "What is all the fuss about?", watch this in-house lecture given by The Guy himself, in April. He gave a more-recent (but shorter) talk in September (the immunotherapy presentation is the second half of the video). If this approach to curing metastatic cancer interests you, please check out this link. The trial is open to many types of cancer--go look!
Life these days is sweet. Chemotherapy started for me in October two years ago. Since that time I've never been able to walk more than about two miles at once mainly due to neuropathy in my feet/legs (a side-effect of oxaliplatin). Yesterday though, I was able to go further! I went 3.7 miles, and today I managed 3 miles (over some wicked hills, too). My energy is back, and the beast of cancer is losing its hideous grip on me.
I am so thankful!
Friday, September 18, 2015
Second Follow-Up part 2: Good News
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.
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.
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 lap-top 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--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. GOOGLE IT!
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...and now my mutation has two twelves in it, too! How cool is that?"
Someone from the flock quipped, "She's really Catholic."
We all laughed. (It's funny because it's true.)
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.
Uncooperative Attending Physician moves out of frame, joining me at the window sill.
Me: After all I've done for you? You can pose for a picture for me.
He reluctantly joined the others.
The Guy, laughing: Usually it's the other way around. Patients normally tell us what we've done for them.
Me: No one has ever considered me "normal" < click!> blurry! again...! <click!> (This one was only slightly less blurry, but I didn't have the strength to try again. I have a horrible, out-dated phone with an abysmal camera.)
Attending Physician: 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 My 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.
We 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--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. GOOGLE IT!
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...and now my mutation has two twelves in it, too! How cool is that?"
Someone from the flock quipped, "She's really Catholic."
We all laughed. (It's funny because it's true.)
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.
Uncooperative Attending Physician moves out of frame, joining me at the window sill.
Me: After all I've done for you? You can pose for a picture for me.
He reluctantly joined the others.
The Guy, laughing: Usually it's the other way around. Patients normally tell us what we've done for them.
Me: No one has ever considered me "normal" < click!> blurry! again...! <click!> (This one was only slightly less blurry, but I didn't have the strength to try again. I have a horrible, out-dated phone with an abysmal camera.)
Attending Physician: 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 My 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.
We 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
Wednesday, July 29, 2015
Day 11 post-Cells: I'm a What?
Day 11 of the trial corresponded to Day 22 in the hospital. It was a Sunday.
During morning rounds, again just two doctors visited. This time the on-call fellow was joined by the attending doc who had been with me since I arrived at NIH. My bone marrow was waking up, and there was talk of me going home "by Wednesday," at the latest. (ANC this day was 3460. Previous values were: 1300, 330, 90, 10, 0, 0, 0...) The docs fully expected that I would reach the required "third consecutive ANC over 1,000" by Monday. My platelet counts were rising, too.
I chirped about being released on Bastille Day. I thought it would be poetic, being "released" and all. O.K. so I wasn't a political prisoner... The attending sort of looked at me like I was a loon, and seemed eager to escape the crazy person's room. ha.
Me: Hey wait!
Attending: [stops dead in his tracks] Yes?
Me: The Guy visited me yesterday.
Attending: [pulls up a chair] Oh he did? I thought he might.
Me: Yes. He did. And...[pointing to on-call fellow] she can corroborate! The Guy called me a "pioneer". How is that possible, that The Pioneer called me a "pioneer"? Is that just his way of encouraging people? Does he say this to everybody?
Attending: No. No, he wouldn't do that. <thoughtful> Lemme tell you...he is The Pioneer, but if he is, then you're the wagon wheel.
Me: Immawhat?
Attending: You're the wheel on the wagon that he's riding in on.
Me: Well! I'm the wagon wheel. <confused> O.K. Could you explain just what we're talking about here? Because: sleep deprivation. (words to that effect)
Attending: Mrs. Ryan, my (theoretical) tumors and your tumors have different genetic mutations. Even if we have the same disease (colon cancer), our tumors are not the same genetically. Your tumors are producing a "target" that your specific white blood cells (TIL) can "see." It's very exciting to us because the mutation your cells are recognizing is like the Cadillac of mutations--everyone has high interest in K-RAS mutations. The potential--who knows how far in the future--may be that instead of these "one-off" cures we are getting, there is the potential that because of your cells, future cancer patients with the same tumor mutation and the same HLA blood type may be able to be cured with an "off-the-shelf" treatment.
Me: <blink. blink.>
Attending: Of course, we won't know anything for sure for months.
Me [in my head]: They keep saying that.
They both left then, and for the second day in a row I sat alone in the hospital room with information that was almost too-good-to-be-true.
I started thinking about all of the questions that I would ask my own fellow when I would see him the following morning. Poor doc.
During morning rounds, again just two doctors visited. This time the on-call fellow was joined by the attending doc who had been with me since I arrived at NIH. My bone marrow was waking up, and there was talk of me going home "by Wednesday," at the latest. (ANC this day was 3460. Previous values were: 1300, 330, 90, 10, 0, 0, 0...) The docs fully expected that I would reach the required "third consecutive ANC over 1,000" by Monday. My platelet counts were rising, too.
I chirped about being released on Bastille Day. I thought it would be poetic, being "released" and all. O.K. so I wasn't a political prisoner... The attending sort of looked at me like I was a loon, and seemed eager to escape the crazy person's room. ha.
Me: Hey wait!
Attending: [stops dead in his tracks] Yes?
Me: The Guy visited me yesterday.
Attending: [pulls up a chair] Oh he did? I thought he might.
Me: Yes. He did. And...[pointing to on-call fellow] she can corroborate! The Guy called me a "pioneer". How is that possible, that The Pioneer called me a "pioneer"? Is that just his way of encouraging people? Does he say this to everybody?
Attending: No. No, he wouldn't do that. <thoughtful> Lemme tell you...he is The Pioneer, but if he is, then you're the wagon wheel.
Me: Immawhat?
Attending: You're the wheel on the wagon that he's riding in on.
Me: Well! I'm the wagon wheel. <confused> O.K. Could you explain just what we're talking about here? Because: sleep deprivation. (words to that effect)
Attending: Mrs. Ryan, my (theoretical) tumors and your tumors have different genetic mutations. Even if we have the same disease (colon cancer), our tumors are not the same genetically. Your tumors are producing a "target" that your specific white blood cells (TIL) can "see." It's very exciting to us because the mutation your cells are recognizing is like the Cadillac of mutations--everyone has high interest in K-RAS mutations. The potential--who knows how far in the future--may be that instead of these "one-off" cures we are getting, there is the potential that because of your cells, future cancer patients with the same tumor mutation and the same HLA blood type may be able to be cured with an "off-the-shelf" treatment.
Me: <blink. blink.>
Attending: Of course, we won't know anything for sure for months.
Me [in my head]: They keep saying that.
They both left then, and for the second day in a row I sat alone in the hospital room with information that was almost too-good-to-be-true.
I started thinking about all of the questions that I would ask my own fellow when I would see him the following morning. Poor doc.
Tuesday, July 28, 2015
Day 10 post-Cells: A Visit from The Guy
On my 21st day in the hospital, I had a surprise visitor.
It was a Saturday. Morning rounds happened a couple of hours later on weekends than they did during the week. I expected to see the on-call fellow ("my" fellow was off that weekend), and the attending physician. At around 11:00 AM, the knock. "White coats", I could tell that much immediately. There were two of them, but instead of the attending doc, who I was expecting, it was the principle investigator of the trial. The Guy.
What?
The Guy and the on-call immunotherapy fellow strolled in and stopped at the foot of my bed.
The Guy was often among the big crowd of doctors I would see on Mondays during "grand rounds"; due to the rash, and the Rh drama, I'd seen the flock many more times than maybe what is typical. TG usually was just one of the pack, and the attending doc would do all of the talking. TG wrote the book, literally, on immunotherapy. He's been working on this for decades.
So, there he was, The Guy, standing at the foot of my bed on a quiet Saturday morning, grinning.
It was a Saturday. Morning rounds happened a couple of hours later on weekends than they did during the week. I expected to see the on-call fellow ("my" fellow was off that weekend), and the attending physician. At around 11:00 AM, the knock. "White coats", I could tell that much immediately. There were two of them, but instead of the attending doc, who I was expecting, it was the principle investigator of the trial. The Guy.
What?
The Guy and the on-call immunotherapy fellow strolled in and stopped at the foot of my bed.
The Guy was often among the big crowd of doctors I would see on Mondays during "grand rounds"; due to the rash, and the Rh drama, I'd seen the flock many more times than maybe what is typical. TG usually was just one of the pack, and the attending doc would do all of the talking. TG wrote the book, literally, on immunotherapy. He's been working on this for decades.
So, there he was, The Guy, standing at the foot of my bed on a quiet Saturday morning, grinning.
Me: Wow, you look happy. Good Morning.
TG: Good Morning Mrs. Ryan. I wanted to tell you again how excited we are about your cells.
Me: Yeah...me too. <still not grasping what these people are talking about> So. Someone told me that I'm the first to have cells that reacted against KRAS ("crass")?
TG: K-RAS ("KAY-rass"), he corrected. You are not the first to react, but you are the first who had many cells returned to you that reacted against K-RAS.
Me: <pondering that comment...> Tell me about K-RAS...if you have time.
TG: It is a gene mutation. It is a mutation from your normal DNA. We know that it is involved in colon cancer and many other cancers.
Me: So what have you learned about my case in particular? Anything, yet?
TG: No, no. It's far too early for that. Far too early. We don't expect to see results for months.
Me: Ah. People keep saying that.
TG: You should visualize those wonderful TILs attacking all of the tumors.
Me: Oh, I do! I have been doing that for a long time.
TG: Good! Good. Mrs. Ryan, you are a pioneer. <pats the foot of the bed, then heads for the door>
Me [in my head]: ...ima what?! What did he say?...pioneer?!
Me: HURRAY for pioneers! The only problem with being a pioneer is all of these arrows in my back.
TG: <stops, turns toward me> Mrs. Ryan, we are going to pull those arrows out of you, one by one.
Me: That would be awesome.
Then he and the fellow left, and I had a moment of wondering whether or not I had just hallucinated the entire story. Hmmm...nope. Don't think so! Holy beans.
The Pioneer himself called me a "pioneer". What in the world?...
Monday, July 27, 2015
Day 9 post-Cells and Mephistopheles
Day 9 was a Friday. What happened Friday is a blur, but I do remember vividly the early morning routine. I was not needing I.V. meds much anymore, but did still need a 15-min. infusion of an antibiotic on Friday evening. My night nurse, C., chatted w/me about her family, and we commiserated about what it is like to have children who are learning to drive (For The Record: Terrifying on Every Level).
When 5:00 AM rolled around, C. came back to draw labs, and the twenty-billion other things that were now so routine that I gave none of them any thought (lift your arm for the blood pressure cuff, hold out the opposite hand for the O2 gizmo...next the stethoscope...blood draws via the H.catheter...). When it came time to provide a daily urine sample (one of the mortifications of life in the hospital), I dutifully donned my slippers, grabbed the ever-present I.V. pole, and shuffled my way to the bathroom, which was about ten steps from my bed.
It was only as I stood at the sink washing up that I realized: I wasn't connected to the I.V. pole! Sometime during the night, C. must've disconnected me without my knowledge. I was so used to dragging that pole around with me, it was now my habit.
I laughed like a lunatic as I threw open the bathroom door, and shoved the pole out ahead of me, letting it roll into the room on its own.
Me: < laughing > Do you know what I just did?!?
Nurse C: Oh my gosh! < doubled over, laughing > I thought I forgot to disconnect you!
Me: That is really pathetic.
Nurse C: < howling > Oh, I can't stand it! Don't worry, I won't tell anyone. <nabs first nurse to walk past in the hallway, then tells her the whole story.>
Me: That's right, kick a patient when she's down. I see how it is...it's O.K. I can take it...
I was happy for the laughter, because the neupogen shots I'd been getting each night (to wake up my bone marrow) had started to hurt quite a lot. Laughter made me forget the pain for a while.
I texted one of my friends a shortened version of the story.
Me: Just brought the I.V. pole to the restroom, even though I wasn't connected.
Friend: Maybe you should give that thing a name, if it's going to be hanging around so much.
Me: Yeah...something onerous. Like...Mephistopheles. Ha! That's it.
So, from that day forward, my I.V. pole was known as Mephistopheles, or "Meph" for short.
I had been listening to "Beethoven's Last Night," a rock-opera by Trans-Siberian Orchestra (TSO). Here's a written version of the story. Mephistopheles is the devil, who tries to trick Beethoven into surrendering all of his music.
On Friday, my ANC reached 330, up from 90 the previous day, and 10 the day prior to that. Things were moving in the right direction.
When 5:00 AM rolled around, C. came back to draw labs, and the twenty-billion other things that were now so routine that I gave none of them any thought (lift your arm for the blood pressure cuff, hold out the opposite hand for the O2 gizmo...next the stethoscope...blood draws via the H.catheter...). When it came time to provide a daily urine sample (one of the mortifications of life in the hospital), I dutifully donned my slippers, grabbed the ever-present I.V. pole, and shuffled my way to the bathroom, which was about ten steps from my bed.
It was only as I stood at the sink washing up that I realized: I wasn't connected to the I.V. pole! Sometime during the night, C. must've disconnected me without my knowledge. I was so used to dragging that pole around with me, it was now my habit.
I laughed like a lunatic as I threw open the bathroom door, and shoved the pole out ahead of me, letting it roll into the room on its own.
Me: < laughing > Do you know what I just did?!?
Nurse C: Oh my gosh! < doubled over, laughing > I thought I forgot to disconnect you!
Me: That is really pathetic.
Nurse C: < howling > Oh, I can't stand it! Don't worry, I won't tell anyone. <nabs first nurse to walk past in the hallway, then tells her the whole story.>
Me: That's right, kick a patient when she's down. I see how it is...it's O.K. I can take it...
I was happy for the laughter, because the neupogen shots I'd been getting each night (to wake up my bone marrow) had started to hurt quite a lot. Laughter made me forget the pain for a while.
I texted one of my friends a shortened version of the story.
Me: Just brought the I.V. pole to the restroom, even though I wasn't connected.
Friend: Maybe you should give that thing a name, if it's going to be hanging around so much.
Me: Yeah...something onerous. Like...Mephistopheles. Ha! That's it.
So, from that day forward, my I.V. pole was known as Mephistopheles, or "Meph" for short.
I had been listening to "Beethoven's Last Night," a rock-opera by Trans-Siberian Orchestra (TSO). Here's a written version of the story. Mephistopheles is the devil, who tries to trick Beethoven into surrendering all of his music.
On Friday, my ANC reached 330, up from 90 the previous day, and 10 the day prior to that. Things were moving in the right direction.
Sunday, July 26, 2015
The Worst Day Ever, Part 2
As happened many, many times during my stay at NIH, a friend would text at just the moment when I needed him or her the most. When the flock of doctors had left the room after delivering the news about the Rh-positive platelets, I received a text from a friend: "How are you doing today?" I replied something like, "Not good. Please pray." but gave no details. There was too much to explain.
Someone knocked on the door, calling, "Nutrition!", and entered with a lunch tray. I was in no mood for lunch. Just then, a visitor entered the room. I recognized her as the (Roman Catholic) Eucharistic Minister. She was filling in for the Wandering Priest, she said, because he wouldn't be at the hospital that day.
When the woman looked at me, it was not with pity, or concern, but profound compassion. She apologized for interrupting my lunch, and asked if she could sit down.
She sat across from me, in a chair facing mine next to the window. The tray-table separated us. I did not touch the food, but instead spent the next hour or so telling her the story--at her request--of how I came to be at the NIH. I started with stories of my kids, and about the sorts of things we did as a family--our walks to Mass, and how the boys loved rainy days the most because on those days we all got to carry umbrellas. I showed her a picture on my phone of my three little boys and their umbrellas, the middle boy's head completely hidden by his blue umbrella. I shared how my diagnosis came about, and what I experienced the night before my initial surgery:
When meditating on what a diagnosis of cancer might mean, I had the overwhelming sense that I would be protected from fear, no matter where the path ahead took me.
I went on to explain that I saw myself talking to Mary, the Mother of Jesus. In a way that I can't explain, I became acutely aware that I would suffer. I felt like I was being told (but I did not hear an audible voice) that what I would endure was absolutely necessary, and it could not be avoided. In some way, I knew that no one could stand in my place--for some reason, it had to be me. I was the one who had to undergo whatever was to come. I was not promised healing, but I mentally accepted whatever lay ahead. I had the overwhelming sense that good was going to come from my disease. I did not know if the "good" would lead to a cure for me, but I trusted that some plan was underway and that my job was to cooperate. I was at peace with it. All worry drained away.
The Eucharistic Minister sat and listened intently. I asked her if she knew who St. Louis de Montfort was. She did. I explained that after the birth of my fifth child, in 2009, I had followed St. Louis' formula for Total Consecration. She was familiar with the devotion. I explained how I had had to reconcile myself to the fact that God's plan might include someone else raising my children instead of me. I told her that the only way I was able to accept this idea was because I believe with everything that I am, that God loves my children even more than I do. I knew that cancer might take my life. Thinking of my kids missing me was almost too much to bear. I had to surrender to God's Will. I had to trust like never before. Whatever the outcome, God could and would use it for His glory. He would not abandon my children..."my children" have in truth been His all along. In fact, even with all of the turmoil, set-backs, and pain that led to me getting to NIH (posts re: failed needle biopsy, here and here which is my new standard for how much something can possibly hurt), I could honestly say, I was protected from fear. Fear gets in the way of faith. I learned this lesson well. I knew, too, that my time at NIH might not lead to a cure for me, but I firmly believed (and do believe) that participating in the TIL clinical trial was what I was meant to do.
We were both in quiet tears.
Talking with this visitor was just what I needed, but now it was my turn to listen. She shared with me the story of her husband's cancer diagnosis. He had had a glioblastoma, cancer in the brain. She told me of his willingness to undergo a clinical trial some fifteen years prior, at the very hospital where we both now sat. The group of patients that underwent that trial, she said, were among the first to receive IL-2. Her husband's side-effects from the substance--the same one I wrote about here and here, and which caused me no side-effects--had cost her husband his life. His brain had swelled uncontrollably from the treatment, and he died.
I don't know how long we talked. When we finished, we assured each other of our prayers, and gave each other permission to re-tell our stories. She shared the Eucharist with me, and we prayed together.
I felt some relief then, but was still restless and annoyed about the Rh-positive platelets. I was to receive another transfusion of platelets that day, and though better, my mood was still one of agitation and loneliness.
My fellow strode in then, as he always did, to check on me before the rest of the doctors came door-to-door on their afternoon rounds. He knew that it was a Very Bad Day for me, and he attempted to lift my spirits in what I considered at the time a most uninspired way.
him: I'm gonna see if Recreational Therapy can come up here to you.
me: You're sentencing me to weave pot-holders?! < scoff >
fellow: I am going to speak to the infusion specialist about what happened. I will let you know what he says.
He left then, and returned later on rounds with the attending physician and several others. The attending physician asked where my husband was, and "Couldn't we get a visit from your kids arranged?"
I explained that my husband's current view of the children was that they are, "walking petri dishes of germs," and that he had forbidden any visitors, including himself, while I was neutropenic.
The doctors filtered out as they always did. The infectious disease specialist hung back a bit, offering a comment, sort of over his shoulder as he walked out, "I can't disagree with your husband."
I was left alone again, to stare out my window-without-a-view. Depression began to settle like an angry fog.
Sometime that afternoon, the fellow returned, swooping in triumphantly with a six-page document, freshly printed and stapled. "Here," he encouraged, "read this. We'll talk about it later. I have my own copy." He explained that he had mentioned to the infusion specialist that he "had this patient who wants to know everything..." The specialist then found an article that had been published in the British Journal of Haematology titled, "Low frequency of anti-D alloimmunization following D+ platelet transfusion: the Anti-D Alloimmunization after D-incompatible Platelet Transfusions (ADAPT) study." He made the fellow a copy, and one for me, too. "She may find this of interest..."
Well then. This was a far cry from weaving pot-holders! I was immediately shaken from my loneliness and gloom. I had been given a project to tackle! Who knew if I would be able to understand a word of it; the fact that these two gentlemen had taken the time to find that study to ease my mind was almost incredible to me. Any doubts that I may have had about the care I was receiving had vanished in that moment.
My doctor returned at the end of his work-day and went over the study step-by-step with me. Though I was at diminished capacity, due to lack of sleep, I was able to keep up, contribute, and agree that the odds of me becoming sensitized from the transfusions I received were very slight indeed, if the medical journal article was accurate.
The Worst Day Ever was over. When I awoke the next morning, the dark cloud was gone. Confidence in my medical team, and in the institution of NIH itself was restored by that one act of perception and kindness on the part of my immunotherapy fellow. I will never forget it.
Someone knocked on the door, calling, "Nutrition!", and entered with a lunch tray. I was in no mood for lunch. Just then, a visitor entered the room. I recognized her as the (Roman Catholic) Eucharistic Minister. She was filling in for the Wandering Priest, she said, because he wouldn't be at the hospital that day.
When the woman looked at me, it was not with pity, or concern, but profound compassion. She apologized for interrupting my lunch, and asked if she could sit down.
She sat across from me, in a chair facing mine next to the window. The tray-table separated us. I did not touch the food, but instead spent the next hour or so telling her the story--at her request--of how I came to be at the NIH. I started with stories of my kids, and about the sorts of things we did as a family--our walks to Mass, and how the boys loved rainy days the most because on those days we all got to carry umbrellas. I showed her a picture on my phone of my three little boys and their umbrellas, the middle boy's head completely hidden by his blue umbrella. I shared how my diagnosis came about, and what I experienced the night before my initial surgery:
When meditating on what a diagnosis of cancer might mean, I had the overwhelming sense that I would be protected from fear, no matter where the path ahead took me.
I went on to explain that I saw myself talking to Mary, the Mother of Jesus. In a way that I can't explain, I became acutely aware that I would suffer. I felt like I was being told (but I did not hear an audible voice) that what I would endure was absolutely necessary, and it could not be avoided. In some way, I knew that no one could stand in my place--for some reason, it had to be me. I was the one who had to undergo whatever was to come. I was not promised healing, but I mentally accepted whatever lay ahead. I had the overwhelming sense that good was going to come from my disease. I did not know if the "good" would lead to a cure for me, but I trusted that some plan was underway and that my job was to cooperate. I was at peace with it. All worry drained away.
The Eucharistic Minister sat and listened intently. I asked her if she knew who St. Louis de Montfort was. She did. I explained that after the birth of my fifth child, in 2009, I had followed St. Louis' formula for Total Consecration. She was familiar with the devotion. I explained how I had had to reconcile myself to the fact that God's plan might include someone else raising my children instead of me. I told her that the only way I was able to accept this idea was because I believe with everything that I am, that God loves my children even more than I do. I knew that cancer might take my life. Thinking of my kids missing me was almost too much to bear. I had to surrender to God's Will. I had to trust like never before. Whatever the outcome, God could and would use it for His glory. He would not abandon my children..."my children" have in truth been His all along. In fact, even with all of the turmoil, set-backs, and pain that led to me getting to NIH (posts re: failed needle biopsy, here and here which is my new standard for how much something can possibly hurt), I could honestly say, I was protected from fear. Fear gets in the way of faith. I learned this lesson well. I knew, too, that my time at NIH might not lead to a cure for me, but I firmly believed (and do believe) that participating in the TIL clinical trial was what I was meant to do.
We were both in quiet tears.
Talking with this visitor was just what I needed, but now it was my turn to listen. She shared with me the story of her husband's cancer diagnosis. He had had a glioblastoma, cancer in the brain. She told me of his willingness to undergo a clinical trial some fifteen years prior, at the very hospital where we both now sat. The group of patients that underwent that trial, she said, were among the first to receive IL-2. Her husband's side-effects from the substance--the same one I wrote about here and here, and which caused me no side-effects--had cost her husband his life. His brain had swelled uncontrollably from the treatment, and he died.
I don't know how long we talked. When we finished, we assured each other of our prayers, and gave each other permission to re-tell our stories. She shared the Eucharist with me, and we prayed together.
I felt some relief then, but was still restless and annoyed about the Rh-positive platelets. I was to receive another transfusion of platelets that day, and though better, my mood was still one of agitation and loneliness.
My fellow strode in then, as he always did, to check on me before the rest of the doctors came door-to-door on their afternoon rounds. He knew that it was a Very Bad Day for me, and he attempted to lift my spirits in what I considered at the time a most uninspired way.
him: I'm gonna see if Recreational Therapy can come up here to you.
me: You're sentencing me to weave pot-holders?! < scoff >
fellow: I am going to speak to the infusion specialist about what happened. I will let you know what he says.
He left then, and returned later on rounds with the attending physician and several others. The attending physician asked where my husband was, and "Couldn't we get a visit from your kids arranged?"
I explained that my husband's current view of the children was that they are, "walking petri dishes of germs," and that he had forbidden any visitors, including himself, while I was neutropenic.
The doctors filtered out as they always did. The infectious disease specialist hung back a bit, offering a comment, sort of over his shoulder as he walked out, "I can't disagree with your husband."
I was left alone again, to stare out my window-without-a-view. Depression began to settle like an angry fog.
Sometime that afternoon, the fellow returned, swooping in triumphantly with a six-page document, freshly printed and stapled. "Here," he encouraged, "read this. We'll talk about it later. I have my own copy." He explained that he had mentioned to the infusion specialist that he "had this patient who wants to know everything..." The specialist then found an article that had been published in the British Journal of Haematology titled, "Low frequency of anti-D alloimmunization following D+ platelet transfusion: the Anti-D Alloimmunization after D-incompatible Platelet Transfusions (ADAPT) study." He made the fellow a copy, and one for me, too. "She may find this of interest..."
Well then. This was a far cry from weaving pot-holders! I was immediately shaken from my loneliness and gloom. I had been given a project to tackle! Who knew if I would be able to understand a word of it; the fact that these two gentlemen had taken the time to find that study to ease my mind was almost incredible to me. Any doubts that I may have had about the care I was receiving had vanished in that moment.
My doctor returned at the end of his work-day and went over the study step-by-step with me. Though I was at diminished capacity, due to lack of sleep, I was able to keep up, contribute, and agree that the odds of me becoming sensitized from the transfusions I received were very slight indeed, if the medical journal article was accurate.
The Worst Day Ever was over. When I awoke the next morning, the dark cloud was gone. Confidence in my medical team, and in the institution of NIH itself was restored by that one act of perception and kindness on the part of my immunotherapy fellow. I will never forget it.
Saturday, July 25, 2015
The Worst Day Ever, Part 1
On Day 7, despite a transfusion of platelets on both Day 3 and Day 6, my counts were still not recovering. I developed an itchy, bright red rash that covered way more of my body than I care to remember. Some docs thought it might be petechiae-gone-crazy, others thought perhaps "heat rash". All seemed content to blame the platelet infusions. I was given a cooling sort of lotion, which relieved the itch somewhat. Later, they prescribed nystatin powder. This seemed to help even more than the lotion had. (Petechiae looks like pin-prick-sized red dots all over the skin, but what I had was a solid, deep coloring that appeared in wide swaths over various parts of my body.)
More fun, I developed an incredibly dark, purple-y bruise on my right upper arm. This hid just below the sleeve of my gown, and happened to be located on the arm most-chosen for blood-pressure measurements and neupogen shots. Nurses routinely gasped when they lifted the sleeve of the gown and found themselves staring at such a battered hunk of flesh.
Nurse duJour: Where'd that come from?
Me: Do you know < insert name of favorite nurse >?
N dJ: Yes...why?
Me: She hit me!
hahaha...
I still don't know how I got that bruise (and it remains on my arm to this day, though it is fading). Of course, no NIH nurse would ever punch a patient! They all went "above and beyond" in their care for me. As did the doctors. Despite what I'm about to tell you next.
Up until Day 8 post-cells, I would wake from my two or maybe three hours of nightly sleep with either a song in my head, or what seemed like someone happily shouting (why shouting, I don't know) a prayer from the rosary (most often this one: "Hail Holy Queen..."). On Day 8 though, I woke to utter silence. Something seemed "off". I felt incredibly lonely. It was Day 8 post-cells, but Day 19 in the hospital with no sign of when my bone-marrow might bounce back. Though the previous day's ANC (absolute neutrophil count) came in at a (not!) whopping "10", I was told not to get my hopes up; it could mean nothing.
It was 6:00 AM. I slogged out of bed, over to the chair that waited by the window. I faced toward the only sliver of sky that I could see from my room, up above the glass walkways that connected the upper floors of two wings of the building. As I prayed a rosary, I noticed my fellow walking through the glass-encased walkway towards the 3NW wing. I knew that in a matter of minutes he would stride into the room without knocking, as he did every morning. I would have plenty of time to finish the rosary before he arrived. I offered prayers for him, and for the rest of the staff, too.
He came in without greeting me, and sat on the edge of the bed. He leaned forward slightly, his hands folded in front of him, his expression serious. He looked past me, out the window.
him: I have something to tell you
me: m'kay
him: We have been giving you Rh-positive platelets.
me, horrified: WHAT?!? What are you trying to do kill me?
him: < silence ...then > ...we're discussing it. We are going to talk about it at rounds. I think it may only impact you if you are intending to have more children. We will talk about it at rounds. I will be back soon.
me, calmer: OK. < long pause > I woke up so homesick. <fighting tears> Do you have anything that can take homesickness away? (Of course, I knew that he didn't.)
him: < long pause > I wish I did. I will be back for rounds soon.
He left. Silent tears streamed down my face. I stared out the window, at the tiny sliver of sky that wasn't blocked by the brick walls of the building. I prayed that I would regain my composure as I faced what the flock of doctors would tell me.
My Rh-negative status was linked to some powerful, tragic memories which came flooding into my mind as I waited for the doctors' return.
What did it mean to be Rh-negative, and receive Rh-positive platelets? How could platelets be Rh-positive? I had no idea. Could it be the cause of the horrible rash?... A more horrifying thought: Would it impact my immune system? Would it affect the TIL treatment?
I was ignorant, and so terribly tired.
A few minutes later a flock of white-coated doctors entered my room. The attending physician took the floor, explaining what the fellow had just covered. He then referred to his peer, who he said, was more experienced with this question. That doctor encouraged me to get a rhoGAM shot.
I had questions. How would rhoGAM affect me, given the fact that I had no immune system to speak of? What were the ramifications if I did not get the rhoGAM? Was it too late already?--the first platelet infusion was five days earlier. With all of the pharmaceuticals coursing through my system already, would it be wise to add one more?... How dangerous is this situation, and did you know this happened before today? Why wasn't I informed ahead of time that this was a possibility...
What I could not verbalize at the time, my chief concern, was this: What other mistakes might happen?
I found it impossible to form the words to express all of the ideas swirling in my mind. I began to doubt everything the doctors said. Prior to this, I had been more than content, I had been eager to trust these brilliant minds. Yet at that moment, I wanted to banish all of them from the room. I wanted to throw things at the door behind them as they left. I was angry about...what? I was sick of feeling sick. I felt out-numbered, ignorant, and utterly helpless. I was alone in a room crowded with strangers, all staring at me. Nobody knew what to say, least of all me.
Someone commented that my platelets were so low, that it would've been more dangerous to not give platelets. "You needed platelets," he stated as a matter-of-fact. Maybe I did need the platelets, but did you know you were giving me Rh-negative platelets? Is something wrong with the process?! Shouldn't I have been informed before it happened? It was too much. I had no strength to argue, or to even, I think, articulate my concerns effectively. I was too weak, and too sleep-deprived. I submitted to the rhoGAM shot. The shot itself was no big deal--my issue was with the lack of information about the platelets. I'm not sure I got my point across. The doctors filtered out of my room--all except one.
The pharmacy specialist held back. He explained that NIH has a world-class blood bank, and even they run low on Rh-negative platelets. He went on to inform me that Rh-positive platelets are often given to Rh-negative patients, to no ill-effect. "Red cells are found in platelets, but in such low numbers that they most-often do no harm." I mentioned that I had already had two infusions, and they spoke of a third one... "Not to worry," he assured me.
I wanted to believe him. I needed more advice. He told me his name, and said he'd be happy to discuss any concerns or questions "any time". He was friendly, and confident. He seemed to believe what he was telling me, but I was not so sure.
As soon as he left, I texted my friend-doctor back at home. His comments confirmed what the pharmacy tech had said. It wasn't enough. I next contacted an online friend who trains nurses about all things Blood. She, like my other friend, assured me that I need not be overly concerned.
I was still terribly homesick. A friend texted, "How are you?" and I texted back something like, "Very rough day, please pray." A few minutes later, something happened that would change everything.
More fun, I developed an incredibly dark, purple-y bruise on my right upper arm. This hid just below the sleeve of my gown, and happened to be located on the arm most-chosen for blood-pressure measurements and neupogen shots. Nurses routinely gasped when they lifted the sleeve of the gown and found themselves staring at such a battered hunk of flesh.
Nurse duJour: Where'd that come from?
Me: Do you know < insert name of favorite nurse >?
N dJ: Yes...why?
Me: She hit me!
hahaha...
I still don't know how I got that bruise (and it remains on my arm to this day, though it is fading). Of course, no NIH nurse would ever punch a patient! They all went "above and beyond" in their care for me. As did the doctors. Despite what I'm about to tell you next.
Up until Day 8 post-cells, I would wake from my two or maybe three hours of nightly sleep with either a song in my head, or what seemed like someone happily shouting (why shouting, I don't know) a prayer from the rosary (most often this one: "Hail Holy Queen..."). On Day 8 though, I woke to utter silence. Something seemed "off". I felt incredibly lonely. It was Day 8 post-cells, but Day 19 in the hospital with no sign of when my bone-marrow might bounce back. Though the previous day's ANC (absolute neutrophil count) came in at a (not!) whopping "10", I was told not to get my hopes up; it could mean nothing.
It was 6:00 AM. I slogged out of bed, over to the chair that waited by the window. I faced toward the only sliver of sky that I could see from my room, up above the glass walkways that connected the upper floors of two wings of the building. As I prayed a rosary, I noticed my fellow walking through the glass-encased walkway towards the 3NW wing. I knew that in a matter of minutes he would stride into the room without knocking, as he did every morning. I would have plenty of time to finish the rosary before he arrived. I offered prayers for him, and for the rest of the staff, too.
He came in without greeting me, and sat on the edge of the bed. He leaned forward slightly, his hands folded in front of him, his expression serious. He looked past me, out the window.
him: I have something to tell you
me: m'kay
him: We have been giving you Rh-positive platelets.
me, horrified: WHAT?!? What are you trying to do kill me?
him: < silence ...then > ...we're discussing it. We are going to talk about it at rounds. I think it may only impact you if you are intending to have more children. We will talk about it at rounds. I will be back soon.
me, calmer: OK. < long pause > I woke up so homesick. <fighting tears> Do you have anything that can take homesickness away? (Of course, I knew that he didn't.)
him: < long pause > I wish I did. I will be back for rounds soon.
He left. Silent tears streamed down my face. I stared out the window, at the tiny sliver of sky that wasn't blocked by the brick walls of the building. I prayed that I would regain my composure as I faced what the flock of doctors would tell me.
My Rh-negative status was linked to some powerful, tragic memories which came flooding into my mind as I waited for the doctors' return.
What did it mean to be Rh-negative, and receive Rh-positive platelets? How could platelets be Rh-positive? I had no idea. Could it be the cause of the horrible rash?... A more horrifying thought: Would it impact my immune system? Would it affect the TIL treatment?
I was ignorant, and so terribly tired.
A few minutes later a flock of white-coated doctors entered my room. The attending physician took the floor, explaining what the fellow had just covered. He then referred to his peer, who he said, was more experienced with this question. That doctor encouraged me to get a rhoGAM shot.
I had questions. How would rhoGAM affect me, given the fact that I had no immune system to speak of? What were the ramifications if I did not get the rhoGAM? Was it too late already?--the first platelet infusion was five days earlier. With all of the pharmaceuticals coursing through my system already, would it be wise to add one more?... How dangerous is this situation, and did you know this happened before today? Why wasn't I informed ahead of time that this was a possibility...
What I could not verbalize at the time, my chief concern, was this: What other mistakes might happen?
I found it impossible to form the words to express all of the ideas swirling in my mind. I began to doubt everything the doctors said. Prior to this, I had been more than content, I had been eager to trust these brilliant minds. Yet at that moment, I wanted to banish all of them from the room. I wanted to throw things at the door behind them as they left. I was angry about...what? I was sick of feeling sick. I felt out-numbered, ignorant, and utterly helpless. I was alone in a room crowded with strangers, all staring at me. Nobody knew what to say, least of all me.
Someone commented that my platelets were so low, that it would've been more dangerous to not give platelets. "You needed platelets," he stated as a matter-of-fact. Maybe I did need the platelets, but did you know you were giving me Rh-negative platelets? Is something wrong with the process?! Shouldn't I have been informed before it happened? It was too much. I had no strength to argue, or to even, I think, articulate my concerns effectively. I was too weak, and too sleep-deprived. I submitted to the rhoGAM shot. The shot itself was no big deal--my issue was with the lack of information about the platelets. I'm not sure I got my point across. The doctors filtered out of my room--all except one.
The pharmacy specialist held back. He explained that NIH has a world-class blood bank, and even they run low on Rh-negative platelets. He went on to inform me that Rh-positive platelets are often given to Rh-negative patients, to no ill-effect. "Red cells are found in platelets, but in such low numbers that they most-often do no harm." I mentioned that I had already had two infusions, and they spoke of a third one... "Not to worry," he assured me.
I wanted to believe him. I needed more advice. He told me his name, and said he'd be happy to discuss any concerns or questions "any time". He was friendly, and confident. He seemed to believe what he was telling me, but I was not so sure.
As soon as he left, I texted my friend-doctor back at home. His comments confirmed what the pharmacy tech had said. It wasn't enough. I next contacted an online friend who trains nurses about all things Blood. She, like my other friend, assured me that I need not be overly concerned.
I was still terribly homesick. A friend texted, "How are you?" and I texted back something like, "Very rough day, please pray." A few minutes later, something happened that would change everything.
Sunday, July 19, 2015
Understanding the TIL Clinical Trial in 19 Easy Steps
See the "Key Posts" link on the side bar to navigate to posts about particular steps as I experienced them. This trial is not just for colon cancer patients--they are recruiting patients with other G.I. cancers, as well as patients with other solid cancers. See the trial link below.
Trial ID: NCT01174121 One patient's perspective:
Step 0 (hello, fellow IT people!): Click the link above, if you're considering this trial. Read the eligibility criteria carefully. One requirement is that either oxaliplatin or irinotecan has failed to cure you. Note well that word "or." You do not need to try every chemo out there, if you don't want to. When FOLFOX failed me, I applied for this trial. I did not receive irinotecan. (This refers to metastatic colorectal cancer. Other cancer types have different criteria.)
My first contact with NIH was on December 19, 2014. I picked up the phone and dialed (866) 820-4505. I spoke to a friendly, helpful research nurse who got the ball rolling almost immediately.
1: Tumor harvest. For the purpose of this trial, at least one tumor must be in an "easily resectable location", and it must be "of sufficient size". The tumor is in a sense a "TIL Factory." The researchers set a size guideline to help ensure they'll have enough material to work with.
My tumor harvest surgery happened on April 1, 2015.
2: Extract tumor-infiltrating lymphocytes from the tumor. Note: TIL are the body's natural defense against tumors. It is because of this step that the protocol requires that a patient commit to a one-month "wash-out" period from chemo before surgery. If you are unable/unwilling to be chemo-free for one month prior to the tumor-harvesting procedure, this trial is not for you. The researchers need to harvest a "living" tumor. They hope to find active TIL in the patient's tumor. Requiring a chemo wash-out prior to harvest surgery gives them a reasonable hope of success at this.
I hadn't had chemo since March 3, 2014, so this was not an issue for me.
3: Expand the TIL in the lab, using an agent called IL-2. (It is also known as Aldesleukin, or Interleukin-2.) This will be used in development of the final cell product. It will also be given via I.V. after the cell infusion, to promote the optimal environment for the TIL.
8: Find out which mutation the patient's TIL most-strongly recognizes. NIH does this by first building a genetic model of the patient's tumor. The model is constructed from pieces of abnormal DNA--the mutations from the previous step. This construct is called a tandem mini-gene. Next, the patient's own dendritic cells (a type of white blood cell) are used to test the TIL for reactivity (see this post for more information on how a T-cell works). Apheresis is the process by which dendritic cells are obtained. My post on my first apheresis is here. I am not a fan of apheresis, but I am a big chicken. I'm sure you'll do fine.
In my case, 61 mutations were incorporated into tandem mini-genes. One of those mutations was the G12D mutation of KRAS.
9: Identify and expand the active TIL. If some TIL show reactivity against the tumor mutation(s), then those TIL are expanded (multiplied) to large numbers. This becomes the patient's treatment product. It is a highly concentrated collection of immune cells that are targeted to one of a patient's particular tumor mutations.
My cell treatment consisted of 148 billion cells, of which 70% were targeted to mutation G12D of KRAS.
10: Patient receives "conditioning" chemo. Chemo (cyclophosphamide, aka cytoxan, and fludarabine) is infused for seven days. (The duration of chemo has been shortened to five days, per J.D.'s experience in Sept. 2018.) This shuts down the patient's immune system. The patient is monitored around the clock for side-effects, signs of infection, and receives hydration via continuous I.V infusion. Many difficult things are associated with this stage of the protocol. The breakdown is: two days receiving cytoxan, followed by five days of fludarabine. This part is difficult. I may be under-reporting. If you've read the blog, you have an idea of what this stage was like for me. In a word: awful, and I've been told that my side effects were minimal. Keep in mind that everyone responds in their own unique way to chemotherapy, and every patient has their coping mechanisms. No-one is allowed into this trial unless at least one full regiment of chemotherapy has failed them, so if you're considering this trial, you already have an idea of what you'll be facing with the chemo here. Bonus: these drugs do not cause neuropathy, however, you will lose your hair.
11: Cell Treatment. Patient is infused with the TIL. Surgery to harvest my tumor happened on April 1, 2015. My return to NIH was Father's Day, 6/21/2015, which was ten days prior to "cell day". I received my cancer-killing TIL treatment on July 1, 2015.
12: IL-2 Infusion. The same agent that was used in the lab to support the proliferation and health of the TIL is now infused into the patient. IL-2 in the doses used by this trial can be a dangerous thing. Normally it comes with a wide range of side effects that could include: spasms, swelling, fever, chills, and hallucinations. Maybe other stuff. Ask your doctor. This part of the protocol is the one place in the various steps where the number of doses the patient should receive is unknown. The patient is left to decide, for the most part, based on how well (or poorly) they are tolerating the side-effects of IL-2. I had no side-effects from IL-2. One doctor said he had "never seen anything like it," but who knows. I recommend prayer! Lots of it.
13: More IL-2. IL-2 infusions happen every 8 hours, until the patient or one of the doctors says "stop". I received 5 doses of IL-2. I was told that this is "about average".
14: Waiting. The patient is given support meds while neutropenic (neutropenic = bone marrow not producing any white blood cells), hydration as needed, meds for nausea, and any other side-effects of either the chemo and/or the IL-2. All that is left is to wait for the patient's bone marrow to "wake up" again after the harsh effects of the seven days of chemo. The time it takes for this to happens varies by individual. I was very weak, tired, and nauseated. There were days when even eating seemed like "too much work". I don't mean 'preparing food to eat', I mean the act of eating food that was delivered right to my bedside table. I have a distinct memory of bringing a ravioli-laden fork to my lips exactly one time before deciding that I was too tired for such strenuous activity. Due to the low platelet counts, and neutropenia, the patient is forbidden from any activity that would cause infection or blood loss. This includes tweezing, shaving, and flossing. Getting a tattoo at this point is right out.
15: Release from hospital. When the patient's platelets reach 50, and absolute neutrophil count (ANC) is at 1,000 for 3 days, or 5,000 for one day, the patient is released from the hospital. These metrics are the signal that the patient's immune system is restored enough to allow him to return to society. Until the bone marrow is fully restored, the patient will take an anti-viral medicine daily, and an antibiotic at 3x/week for many weeks. I was released on Bastille Day, July 14. My hospital stay was 24 days. They expect patients on this trial to spend 3 to 4 weeks in the hospital.
16: First follow-up. This is scheduled for 6 weeks post "cell day." You'll go to the phlebotomy department where many vials of blood will be taken. Later, you'll get scanned (CT and/or MRI). The following day, you will meet with your immunotherapy fellow and an attending physician in the outpatient clinic (aka "OP3") to discuss their findings.
17: Second follow-up. You will return to NIH a second time--this visit is the teller--around 12-weeks post-cells for scans and labs.
18: More and more follow-ups. Scans continue periodically, if tumors are not growing, to determine whether tumors are stable or shrinking. If growth is shown two months in a row, the patient is released from the trial to pursue some other course of treatment. If no tumor growth is shown on the scans, you may be called back for many more follow-ups (let us hope for this!)
If you are considering participating in this trial, understand that it will involve a lot of waiting. It takes several weeks to sequence the DNA, compare it, and to build the tandem mini-genes. You'll be assigned a "fellow" (immunotherapy fellow) who will hopefully be able to answer your questions and keep you informed about how your cells are doing while you wait.
If you do get accepted into the trial, and make it through to "cell day", may I suggest the following for your consideration:
Give up coffee, if possible. I am a "social drinker" of coffee, so this was not an issue for me, however, I have heard from another trial participant that dealing with caffeine withdrawal was not a pleasant experience.
Say Good-bye to Sleeping at least for the cyclophosphamide phase. During the two days of this infusion, you are guaranteed to sleep very little. Your bladder will be treated to some protective agent whose name escapes me... At any rate, they'll be keeping you ultra-hydrated in an effort to protect your bladder, and so you'll be awakened every two hours for a full 48-hours once the Cytoxan infusion begins. Additionally, after the chemo phase is over, nurses will continue checking on you day and night for weeks, sometimes waking you to take vital signs. The beeping and whirring infusion pumps can also be a sleep-stealer until you adapt to the noise. Consider bringing earplugs if noises bother you.
Load up your devices. If you are traveling to NIH from far away like I was, you may spend a lot of time alone in your room. Entertainment could save your sanity. Bring all of the cords for any electronics you plan to use. Plan to keep in touch with family and friends via germ-free video chats instead of in-person visits.
Prepare to become bald: bring a hat, scarf, wig, or other head covering if you aren't comfortable being seen without hair. Also: newly bald heads are chilly, I've found. One thing I wish I had brought with me was an electric shaver. The clippers left a lot of stubble, and it was painful to sleep on that stubbly scalp for the first couple of nights.
Expect to be taking a lot of pills. If pill-swallowing is a difficult experience for you, you might want to get some practice with it before your hospital stay. While you're neutropenic, you'll be receiving multiple oral meds every day. Nothing says, "Good Morning!" like a handful of pills.
Most Important:
Remember that you're in a fight for your life. It won't be easy, but it is worth fighting for, and you've got some incredibly dedicated, caring, and skilled professionals right by your side every step of the way.
Trial ID: NCT01174121 One patient's perspective:
Step 0 (hello, fellow IT people!): Click the link above, if you're considering this trial. Read the eligibility criteria carefully. One requirement is that either oxaliplatin or irinotecan has failed to cure you. Note well that word "or." You do not need to try every chemo out there, if you don't want to. When FOLFOX failed me, I applied for this trial. I did not receive irinotecan. (This refers to metastatic colorectal cancer. Other cancer types have different criteria.)
My first contact with NIH was on December 19, 2014. I picked up the phone and dialed (866) 820-4505. I spoke to a friendly, helpful research nurse who got the ball rolling almost immediately.
1: Tumor harvest. For the purpose of this trial, at least one tumor must be in an "easily resectable location", and it must be "of sufficient size". The tumor is in a sense a "TIL Factory." The researchers set a size guideline to help ensure they'll have enough material to work with.
My tumor harvest surgery happened on April 1, 2015.
2: Extract tumor-infiltrating lymphocytes from the tumor. Note: TIL are the body's natural defense against tumors. It is because of this step that the protocol requires that a patient commit to a one-month "wash-out" period from chemo before surgery. If you are unable/unwilling to be chemo-free for one month prior to the tumor-harvesting procedure, this trial is not for you. The researchers need to harvest a "living" tumor. They hope to find active TIL in the patient's tumor. Requiring a chemo wash-out prior to harvest surgery gives them a reasonable hope of success at this.
I hadn't had chemo since March 3, 2014, so this was not an issue for me.
3: Expand the TIL in the lab, using an agent called IL-2. (It is also known as Aldesleukin, or Interleukin-2.) This will be used in development of the final cell product. It will also be given via I.V. after the cell infusion, to promote the optimal environment for the TIL.
4: Mapping of tumor DNA. (Note the dual purpose for harvesting a tumor: to collect TIL, and to map the tumor's DNA.) NIH will perform whole exome sequencing on the patient's DNA. This is a far more extensive analysis than you might already have received from companies such as Foundation One.
5: Mapping of healthy DNA.
6: Identify the mutations. Mutations are identified by comparing the patient's normal DNA to their tumor DNA.
7: Choose which mutated genes are significant. Some mutations are innocuous, while others may be oncogenes.
5: Mapping of healthy DNA.
6: Identify the mutations. Mutations are identified by comparing the patient's normal DNA to their tumor DNA.
7: Choose which mutated genes are significant. Some mutations are innocuous, while others may be oncogenes.
8: Find out which mutation the patient's TIL most-strongly recognizes. NIH does this by first building a genetic model of the patient's tumor. The model is constructed from pieces of abnormal DNA--the mutations from the previous step. This construct is called a tandem mini-gene. Next, the patient's own dendritic cells (a type of white blood cell) are used to test the TIL for reactivity (see this post for more information on how a T-cell works). Apheresis is the process by which dendritic cells are obtained. My post on my first apheresis is here. I am not a fan of apheresis, but I am a big chicken. I'm sure you'll do fine.
In my case, 61 mutations were incorporated into tandem mini-genes. One of those mutations was the G12D mutation of KRAS.
9: Identify and expand the active TIL. If some TIL show reactivity against the tumor mutation(s), then those TIL are expanded (multiplied) to large numbers. This becomes the patient's treatment product. It is a highly concentrated collection of immune cells that are targeted to one of a patient's particular tumor mutations.
My cell treatment consisted of 148 billion cells, of which 70% were targeted to mutation G12D of KRAS.
10: Patient receives "conditioning" chemo. Chemo (cyclophosphamide, aka cytoxan, and fludarabine) is infused for seven days. (The duration of chemo has been shortened to five days, per J.D.'s experience in Sept. 2018.) This shuts down the patient's immune system. The patient is monitored around the clock for side-effects, signs of infection, and receives hydration via continuous I.V infusion. Many difficult things are associated with this stage of the protocol. The breakdown is: two days receiving cytoxan, followed by five days of fludarabine. This part is difficult. I may be under-reporting. If you've read the blog, you have an idea of what this stage was like for me. In a word: awful, and I've been told that my side effects were minimal. Keep in mind that everyone responds in their own unique way to chemotherapy, and every patient has their coping mechanisms. No-one is allowed into this trial unless at least one full regiment of chemotherapy has failed them, so if you're considering this trial, you already have an idea of what you'll be facing with the chemo here. Bonus: these drugs do not cause neuropathy, however, you will lose your hair.
11: Cell Treatment. Patient is infused with the TIL. Surgery to harvest my tumor happened on April 1, 2015. My return to NIH was Father's Day, 6/21/2015, which was ten days prior to "cell day". I received my cancer-killing TIL treatment on July 1, 2015.
12: IL-2 Infusion. The same agent that was used in the lab to support the proliferation and health of the TIL is now infused into the patient. IL-2 in the doses used by this trial can be a dangerous thing. Normally it comes with a wide range of side effects that could include: spasms, swelling, fever, chills, and hallucinations. Maybe other stuff. Ask your doctor. This part of the protocol is the one place in the various steps where the number of doses the patient should receive is unknown. The patient is left to decide, for the most part, based on how well (or poorly) they are tolerating the side-effects of IL-2. I had no side-effects from IL-2. One doctor said he had "never seen anything like it," but who knows. I recommend prayer! Lots of it.
13: More IL-2. IL-2 infusions happen every 8 hours, until the patient or one of the doctors says "stop". I received 5 doses of IL-2. I was told that this is "about average".
14: Waiting. The patient is given support meds while neutropenic (neutropenic = bone marrow not producing any white blood cells), hydration as needed, meds for nausea, and any other side-effects of either the chemo and/or the IL-2. All that is left is to wait for the patient's bone marrow to "wake up" again after the harsh effects of the seven days of chemo. The time it takes for this to happens varies by individual. I was very weak, tired, and nauseated. There were days when even eating seemed like "too much work". I don't mean 'preparing food to eat', I mean the act of eating food that was delivered right to my bedside table. I have a distinct memory of bringing a ravioli-laden fork to my lips exactly one time before deciding that I was too tired for such strenuous activity. Due to the low platelet counts, and neutropenia, the patient is forbidden from any activity that would cause infection or blood loss. This includes tweezing, shaving, and flossing. Getting a tattoo at this point is right out.
15: Release from hospital. When the patient's platelets reach 50, and absolute neutrophil count (ANC) is at 1,000 for 3 days, or 5,000 for one day, the patient is released from the hospital. These metrics are the signal that the patient's immune system is restored enough to allow him to return to society. Until the bone marrow is fully restored, the patient will take an anti-viral medicine daily, and an antibiotic at 3x/week for many weeks. I was released on Bastille Day, July 14. My hospital stay was 24 days. They expect patients on this trial to spend 3 to 4 weeks in the hospital.
16: First follow-up. This is scheduled for 6 weeks post "cell day." You'll go to the phlebotomy department where many vials of blood will be taken. Later, you'll get scanned (CT and/or MRI). The following day, you will meet with your immunotherapy fellow and an attending physician in the outpatient clinic (aka "OP3") to discuss their findings.
17: Second follow-up. You will return to NIH a second time--this visit is the teller--around 12-weeks post-cells for scans and labs.
18: More and more follow-ups. Scans continue periodically, if tumors are not growing, to determine whether tumors are stable or shrinking. If growth is shown two months in a row, the patient is released from the trial to pursue some other course of treatment. If no tumor growth is shown on the scans, you may be called back for many more follow-ups (let us hope for this!)
If you are considering participating in this trial, understand that it will involve a lot of waiting. It takes several weeks to sequence the DNA, compare it, and to build the tandem mini-genes. You'll be assigned a "fellow" (immunotherapy fellow) who will hopefully be able to answer your questions and keep you informed about how your cells are doing while you wait.
If you do get accepted into the trial, and make it through to "cell day", may I suggest the following for your consideration:
Give up coffee, if possible. I am a "social drinker" of coffee, so this was not an issue for me, however, I have heard from another trial participant that dealing with caffeine withdrawal was not a pleasant experience.
Say Good-bye to Sleeping at least for the cyclophosphamide phase. During the two days of this infusion, you are guaranteed to sleep very little. Your bladder will be treated to some protective agent whose name escapes me... At any rate, they'll be keeping you ultra-hydrated in an effort to protect your bladder, and so you'll be awakened every two hours for a full 48-hours once the Cytoxan infusion begins. Additionally, after the chemo phase is over, nurses will continue checking on you day and night for weeks, sometimes waking you to take vital signs. The beeping and whirring infusion pumps can also be a sleep-stealer until you adapt to the noise. Consider bringing earplugs if noises bother you.
Load up your devices. If you are traveling to NIH from far away like I was, you may spend a lot of time alone in your room. Entertainment could save your sanity. Bring all of the cords for any electronics you plan to use. Plan to keep in touch with family and friends via germ-free video chats instead of in-person visits.
Prepare to become bald: bring a hat, scarf, wig, or other head covering if you aren't comfortable being seen without hair. Also: newly bald heads are chilly, I've found. One thing I wish I had brought with me was an electric shaver. The clippers left a lot of stubble, and it was painful to sleep on that stubbly scalp for the first couple of nights.
Expect to be taking a lot of pills. If pill-swallowing is a difficult experience for you, you might want to get some practice with it before your hospital stay. While you're neutropenic, you'll be receiving multiple oral meds every day. Nothing says, "Good Morning!" like a handful of pills.
Most Important:
Remember that you're in a fight for your life. It won't be easy, but it is worth fighting for, and you've got some incredibly dedicated, caring, and skilled professionals right by your side every step of the way.
Monday, July 13, 2015
Day 6 and Becoming Bald
My platelets were bouncing around in the 7 to 10 range, and so a second infusion of platelets was ordered for this day.
Though I was weak and tired, I knew a shower would make me feel a little better. When I toweled off my hair, I was in for a big surprise. So much hair was loose that it got tangled into the hair that was still connected. It was like I had little mats of hair all over my head. Not attractive! I tried combing out some of the mats, but fistfuls of hair came out instead. It was bad. My hair is dark-ish, and the contrast between the dark hair and my pale, shiny scalp was...striking. I was told to expect this, but it was still rather jarring to know that this was the day I'd go bald.
When I exited the bathroom, my eyes fell on a new item in the room. It was a package--a large one--from a long-time friend. What a wonderful distraction this was! I opened the box and took note of only the items readily visible. I decided that I wanted to save the excitement for after I went bald. It would give me something else to think about, and to eagerly anticipate.
The logistics of getting my head shaved turned out to be an all-day affair. I was given conflicting information about whether there were electric clippers on the ward, and about whether a nurse could or should do the shaving. Each new person I asked about it seemed to have a different answer. What they all were hoping for, was that the NIH barber would be able to visit me in my room to get rid of my hair. Before that could happen though, I would need a visit from a social worker (why?...still don't know) and a voucher, which would cover the cost. My nurse set the wheels in motion.
At 3:45 PM or so, the social worker appeared. He introduced himself and apologized for not being able to arrive any earlier. He was covering someone else's shift. He carefully broached the topic of the voucher. "These are only given to patients in financial need. Are you able to cover $20 to $30 for the service?" "Whatever. Just get him up here. I don't want to wake up next to a pile of hair, and I'm too nauseous to pull it all out myself." I may have used gentler words. He then told me that, unfortunately, I would need to make an appointment with the salon for the next day, as they would be closing any minute. (I was not allowed to go to the salon myself due to neutropenia.) Aside from certain members of the medical staff, the hospital pretty much shuts down promptly at 5:00 PM.
When afternoon rounds happened, I asked the attending if it would be possible for me to get my head shaved. "I can do it myself, if you let me."
Me: I have three little boys at home. I've used electric clippers dozens of times.
Fellow: Do they still have their ears?
Me: I'm sure they'll grow back. Eventually.
The risk of nicking my scalp was one that the nurses were hesitant to assume. The attending gave his OK. I asked that it happen "before bed", and he said that he would take care of it.
Soon after, my nurse showed up with electric clippers. She disinfected them, then asked me warily if I knew how to use them (because she did not). I explained that I have used this type of thing many, many times on my husband and boys. She was hesitant. "Be careful," she cautioned. She brought in a sheet and asked that I stand on it while shaving my head. She mentioned more than once that she did not want me to clean up; she would do it.
Deep breath.
I was very eager to get this finished. My hair was in such a state that it was a tremendous relief to be rid of it. I wasn't sad about it at all; to my mind, I was fixing a problem. I ran into some difficulty due to my near-sightedness. I couldn't not wear my glasses...also, my arms were weak. It was a challenge to do the back adequately. I tried. Thankfully, the nurse came in then and witnessed how easy it is to use clippers. She asked if she could help, and I gladly turned over the device to her. I departed the bathroom with short, stubbly hair, and no nicks or scrapes. Success!
I found out quickly how chilly a bald head can be. Sleeping on the stubble was uncomfortable. It felt exactly like I was sleeping on a hairbrush. I used a super-soft blanket that was in the "box of awesome" that my friend had sent. It helped. Bits of stubble fell out everywhere, my scalp itched like crazy, but I was content. Self-conscious? Yes. I figured these caregivers in particular were no stranger to the bald-headed woman. It would be fine. I went a day or two w/o any head-covering, but since then have always had a scarf or "chemo beanie" on, even during the night (warmth!). Being bald is not nearly as difficult as I thought it would be!
I began plotting ways that I could fake a biker-tattoo on my neck. Of all the services they have here at NIH, tattoo parlor is not one of them. Ah, well. It would've been a terrific joke to play on my husband, who would not be back to the hospital until I was released.
Though I was weak and tired, I knew a shower would make me feel a little better. When I toweled off my hair, I was in for a big surprise. So much hair was loose that it got tangled into the hair that was still connected. It was like I had little mats of hair all over my head. Not attractive! I tried combing out some of the mats, but fistfuls of hair came out instead. It was bad. My hair is dark-ish, and the contrast between the dark hair and my pale, shiny scalp was...striking. I was told to expect this, but it was still rather jarring to know that this was the day I'd go bald.
When I exited the bathroom, my eyes fell on a new item in the room. It was a package--a large one--from a long-time friend. What a wonderful distraction this was! I opened the box and took note of only the items readily visible. I decided that I wanted to save the excitement for after I went bald. It would give me something else to think about, and to eagerly anticipate.
The logistics of getting my head shaved turned out to be an all-day affair. I was given conflicting information about whether there were electric clippers on the ward, and about whether a nurse could or should do the shaving. Each new person I asked about it seemed to have a different answer. What they all were hoping for, was that the NIH barber would be able to visit me in my room to get rid of my hair. Before that could happen though, I would need a visit from a social worker (why?...still don't know) and a voucher, which would cover the cost. My nurse set the wheels in motion.
At 3:45 PM or so, the social worker appeared. He introduced himself and apologized for not being able to arrive any earlier. He was covering someone else's shift. He carefully broached the topic of the voucher. "These are only given to patients in financial need. Are you able to cover $20 to $30 for the service?" "Whatever. Just get him up here. I don't want to wake up next to a pile of hair, and I'm too nauseous to pull it all out myself." I may have used gentler words. He then told me that, unfortunately, I would need to make an appointment with the salon for the next day, as they would be closing any minute. (I was not allowed to go to the salon myself due to neutropenia.) Aside from certain members of the medical staff, the hospital pretty much shuts down promptly at 5:00 PM.
When afternoon rounds happened, I asked the attending if it would be possible for me to get my head shaved. "I can do it myself, if you let me."
Me: I have three little boys at home. I've used electric clippers dozens of times.
Fellow: Do they still have their ears?
Me: I'm sure they'll grow back. Eventually.
The risk of nicking my scalp was one that the nurses were hesitant to assume. The attending gave his OK. I asked that it happen "before bed", and he said that he would take care of it.
Soon after, my nurse showed up with electric clippers. She disinfected them, then asked me warily if I knew how to use them (because she did not). I explained that I have used this type of thing many, many times on my husband and boys. She was hesitant. "Be careful," she cautioned. She brought in a sheet and asked that I stand on it while shaving my head. She mentioned more than once that she did not want me to clean up; she would do it.
Deep breath.
I was very eager to get this finished. My hair was in such a state that it was a tremendous relief to be rid of it. I wasn't sad about it at all; to my mind, I was fixing a problem. I ran into some difficulty due to my near-sightedness. I couldn't not wear my glasses...also, my arms were weak. It was a challenge to do the back adequately. I tried. Thankfully, the nurse came in then and witnessed how easy it is to use clippers. She asked if she could help, and I gladly turned over the device to her. I departed the bathroom with short, stubbly hair, and no nicks or scrapes. Success!
I found out quickly how chilly a bald head can be. Sleeping on the stubble was uncomfortable. It felt exactly like I was sleeping on a hairbrush. I used a super-soft blanket that was in the "box of awesome" that my friend had sent. It helped. Bits of stubble fell out everywhere, my scalp itched like crazy, but I was content. Self-conscious? Yes. I figured these caregivers in particular were no stranger to the bald-headed woman. It would be fine. I went a day or two w/o any head-covering, but since then have always had a scarf or "chemo beanie" on, even during the night (warmth!). Being bald is not nearly as difficult as I thought it would be!
I began plotting ways that I could fake a biker-tattoo on my neck. Of all the services they have here at NIH, tattoo parlor is not one of them. Ah, well. It would've been a terrific joke to play on my husband, who would not be back to the hospital until I was released.