I would have a lung wedge procedure called VATS (video assisted thoracoscopy surgery) to remove one of the nodules in my right lung. The doctor cautioned me ahead of time that the procedure was "not intended to be therapeutic, but diagnostic". I understood that to mean that if cancer was present, removing one node would not cure me of it.
Though the thoracic surgeon initially thought I could be sent home on the same day as the surgery, he changed his mind when he discovered, while I was still on the operating table, that the first nodule he removed was only a lymph node. He tried again, and this second attempt resulted in the node (known to me as Casamina) finding its way to pathology. Surgery took place on a Friday; I would see my oncologist for the results on the following Wednesday. Christmas was just around the corner, less than two weeks away.
I described the events I remembered from my hospital stay:
Subject: Blast: Story of a Lung Biopsy
Sent: December 16, 2014 6:18 AM
Hello, Friends.
Please allow me to empty my brain...
I checked in at [the hospital] at 6:30 AM on Friday. They were expecting me at 6:00 AM. My bad. I was given instructions on two separate occasions. I wrote them down each time, but didn't realize that the two arrival times didn't match. I miss my brain very much! We received a "Where are you?" phone call en-route, and upon arrival we were enveloped in urgency. Surgery was to commence at 7:30 AM. There was much to do before then.
I met some nurses who jabbed me with needles and started two IVs, each on the first try. I met the anesthesiologist, who promised to pile on the anti-nausea meds. [The thoracic surgeon] came in to mark my initials on the right side of my back with a thick marking pen. He said that he thought I'd be able to go home that day. Dr. Anesthesiologist wanted to start an arterial line, but the surgeon said that I wouldn't need it.
Patrick was allowed into the room just seconds before they wheeled me away. I was unconscious before reaching the operating room.
I woke up two hours later as I was being wheeled into a huge room where my husband was waiting. I asked whether this was a recovery room or a regular room. "You have to spend the night," the worker said. Someone took an x-ray of my chest. I was aware of a clear, flexible tube with a dime-sized cross-section coming out of my side. It hurt. The tube fed into a portable suction box gizmo resting on the floor. I kept falling asleep, then jolting awake. My left arm was connected to an IV bag containing antibiotics. My right arm sported a hep-lock.
I remember being asked to "rate (my) pain" over and over. I remember that it hurt to breathe. That's about it for the morning and early afternoon.
At 4:00 PM I was served broth and a popsicle. By 6:00 PM they said I could have regular food. I noticed that both I.V. lines were hep-locked (I don't remember this happening) and a nurse told me that I was free to "move about". Hahaha, "free". I managed to hobble to the restroom and then ever-so-carefully back to the bed. Breathing with a chest tube was something of an adventure. Shallow breathing was not a problem, but anything more than that was painful and scary. The nurse told me that "coughing is good," and encouraged me to do that, but coughing was not good, it was freakish. I coughed up all manner of unholy specimens. gack.
I slept for a few hours, but woke at 5 AM in severe pain. My back was in spasms and I could hardly breathe. I tried to calm the heck down. Didn't work. I searched for the call-button and was barely able to whisper a pathetic plea for "something for pain". A nurse came right away and asked me to rate my pain (again!). I managed to convey the word, "Ten." She left to get meds. She injected a miraculous something into the hep-lock in my left hand. Almost instantly both of my arms turned to lead, my shoulders dropped, and my brain went to mush. The spasms stopped. I slept.
Later that morning I met "Dr. Zorro" (he looked like Antonio Bandares), and the resident, "Dr. John Boy" (a Richard Thomas look-alike). Zorro checked the suction box thingy, gave his blessing, and left. John Boy announced that he would be removing the chest tube. First, he clipped the sutures (ow! ow! OW!) and then he ever-so-slowly began pulling the tube out. The tube seemed to me to be about ten feet long. Patrick, who was there and witnessed the whole horrible scene, says it was about one foot long. If I had to describe how it felt, I would say that it felt exactly like somebody was pulling a large, long tube right out of my chest cavity, which is to say: SO WEIRD. John Boy said that the tube was only inserted "about 18 cm (7 in)". What does he know? He finished by dressing the gaping hole in my flesh.
After another chest x-ray, I was released from the hospital. It was late afternoon.
...
I will see [oncology] later this week when the pathology report is ready.
For four days I focused on recovering from the surgery, and not on what the pathology findings might be. Immediately preceding the operation, Patrick and I had specifically asked the surgeon to not divulge any opinion about what he might find during the surgery. We explained to him that we preferred to wait until pathology reported its findings--we did not want another "abnormal tissue" report that turned out to be nothing. Our desire was to go home in blissful ignorance. The doctor indicated that he understood what we were asking.
Sadly, our request was not honored. While I was in post-op, the doctor found Patrick in the waiting area and immediately reported, "It's cancer. Pathology will tell us whether lung or colon, but it's definitely cancer." I cannot begin to imagine the betrayal and sadness Patrick must've felt at that moment. To my husband's credit, he courageously kept the doctor's comment to himself, knowing for certain that I wanted to hear the results only when they were confirmed by pathology. Patrick unselfishly protected me from the devastating news and allowed me a few more hope-filled days before I too, would be faced with the reality that cancer had spread to my lungs. I wasn't cured at all. In fact, my prognosis was thoroughly, horribly grim.
Saturday, May 30, 2015
Friday, May 29, 2015
Another Doctor, Another Procedure
In mid-November, 2014, after enduring a needle biopsy of my lung spleen that gave no useful information, my oncologist ordered a PET scan. It would be my third PET scan since diagnosis. My CEA had risen, but was still in the normal range.
When the report came back, for the first time, worrisome hypermetabolic activity was noted. Five of the eight known nodes in my lungs had lit up. Each node's SUV* was very low--too low to be sure of anything. It was just ambiguous enough that a clear path forward wasn't obvious. My oncologist offered three options for how to proceed:
a) Wait and see. Repeat the PET scan in a few months to see whether anything changed.
b) Act now. She could prescribe oral chemotherapy (Xeloda, which is the pill form of fluorouracil, and Avastin, which is a drug that inhibits the tumor's ability to acquire its own blood supply) under the assumption that it was colon cancer in my lungs.
c) Biopsy. I could undergo a lung wedge procedure wherein a thoracic surgeon would slice off a section of my lung that contains a nodule and send it to pathology for analysis.
I was too impatient for the first option, though in retrospect that may have been the better choice. Option two held no appeal at all. I was firmly opposed to more chemo unless it was warranted. The third option made the most sense to me at the time. It would give us unequivocal results, but I wasn't keen on returning to the same facility where my spleen had been so-recently biopsied. I found a different hospital.
I updated my friends:
...hopefully we will put the question of "What ARE those things in my lungs, anyway?" to bed. Finally. [My oncologist] described the procedure as "removing a wedge of lung tissue". A wedge?! A...wedge. Ugh. I am glad I will be asleep when they do it. They will use a procedure called "video-assisted thoracoscopy", or VATS. It is an outpatient procedure. I decided to go to a different facility to have this done.
...Pat and I will meet with a thoracic surgeon from [a different hospital] to discuss my case. I will bring to him a stack of CDs containing many hundreds of images for review, along with the associated medical reports. I will have a lot of questions, chief among them, "Will my spleen be involved in any way?" ha ha
We met with him in his office shortly afterward, and I wrote:
He's going to remove one of the nodes from the base of my right lung (far, far from my spleen). It is fairly close to the chest wall, and he thinks he will have no problem extracting it. He explained that the tool he uses to obtain the tissue will staple as it cuts, which at once nauseates and intrigues me. I will be under general anesthesia. The doctor will somehow stop my lung from moving (breathing) for the duration of the procedure. I will have a "chest tube" coming out of my side when I wake up. ack! ack! ack! I will remain in the hospital until the chest tube is no longer needed. This could be several hours, or a day, or several days. He said that I should expect to be in the hospital at least a day.
The surgery was scheduled for December 12, the Feast of Our Lady of Guadalupe. I scheduled a follow-up with my oncologist for five days after that. Whatever the news would be, I wanted to hear it from her.
*SUV = standard uptake value. It is an indicator of hypermetabolic activity. Prior to the PET scan, radioactive glucose is injected into the patient. This substance is attracted to areas in the body that are experiencing rapid cell-division, as with growing cancer cells, or in areas undergoing tissue repair.
When the report came back, for the first time, worrisome hypermetabolic activity was noted. Five of the eight known nodes in my lungs had lit up. Each node's SUV* was very low--too low to be sure of anything. It was just ambiguous enough that a clear path forward wasn't obvious. My oncologist offered three options for how to proceed:
a) Wait and see. Repeat the PET scan in a few months to see whether anything changed.
b) Act now. She could prescribe oral chemotherapy (Xeloda, which is the pill form of fluorouracil, and Avastin, which is a drug that inhibits the tumor's ability to acquire its own blood supply) under the assumption that it was colon cancer in my lungs.
c) Biopsy. I could undergo a lung wedge procedure wherein a thoracic surgeon would slice off a section of my lung that contains a nodule and send it to pathology for analysis.
I was too impatient for the first option, though in retrospect that may have been the better choice. Option two held no appeal at all. I was firmly opposed to more chemo unless it was warranted. The third option made the most sense to me at the time. It would give us unequivocal results, but I wasn't keen on returning to the same facility where my spleen had been so-recently biopsied. I found a different hospital.
I updated my friends:
...hopefully we will put the question of "What ARE those things in my lungs, anyway?" to bed. Finally. [My oncologist] described the procedure as "removing a wedge of lung tissue". A wedge?! A...wedge. Ugh. I am glad I will be asleep when they do it. They will use a procedure called "video-assisted thoracoscopy", or VATS. It is an outpatient procedure. I decided to go to a different facility to have this done.
...Pat and I will meet with a thoracic surgeon from [a different hospital] to discuss my case. I will bring to him a stack of CDs containing many hundreds of images for review, along with the associated medical reports. I will have a lot of questions, chief among them, "Will my spleen be involved in any way?" ha ha
We met with him in his office shortly afterward, and I wrote:
He's going to remove one of the nodes from the base of my right lung (far, far from my spleen). It is fairly close to the chest wall, and he thinks he will have no problem extracting it. He explained that the tool he uses to obtain the tissue will staple as it cuts, which at once nauseates and intrigues me. I will be under general anesthesia. The doctor will somehow stop my lung from moving (breathing) for the duration of the procedure. I will have a "chest tube" coming out of my side when I wake up. ack! ack! ack! I will remain in the hospital until the chest tube is no longer needed. This could be several hours, or a day, or several days. He said that I should expect to be in the hospital at least a day.
The surgery was scheduled for December 12, the Feast of Our Lady of Guadalupe. I scheduled a follow-up with my oncologist for five days after that. Whatever the news would be, I wanted to hear it from her.
*SUV = standard uptake value. It is an indicator of hypermetabolic activity. Prior to the PET scan, radioactive glucose is injected into the patient. This substance is attracted to areas in the body that are experiencing rapid cell-division, as with growing cancer cells, or in areas undergoing tissue repair.
Thursday, May 28, 2015
The Story of a Needle Biopsy: Part 2
Part 1 is here.
I lay on the "bed" of a CT scanner with my arms over my head, and in excruciating pain for reasons I didn't understand. The interventionist radiologist had just majestically declared to me and to the handful of assistants in the room that the needle biopsy of my left lung had concluded. My thoughts were, "I hurt. This hurts. What just happened?" But, no words came out. The doc vanished. Other people were talking about their plans for the weekend. They had no reason to think that anything was amiss; I had been fine until a minute or two ago. My scrambled brain didn't know what to make of any of it. I was unable to eke out a sound. It hurt too much.
Every breath felt like daggers were slicing into my lungs. I moved from the scanner to a gurney, trying not to breathe. They wheeled me to a busy area just outside the scanning room. The nurse came by and asked if I was in any pain. I nodded through tears. I tried to indicate that my shoulder hurt. She gave me a long, searching glance and then said, "I've never heard anyone say that before. Maybe it's because of the way we had you positioned, maybe your port has something to do with it."
They left me sitting upright on the gurney, my husband close by in a chair. Eventually, the stabbing happened only sometimes, which was a big improvement.
When the doctor stopped by some time afterward he mentioned that at least one of the "cores" appeared to him "by gross examination" to contain abnormal lung tissue. Really, really not a great time for this conversation. I never saw him again after that.
X-rays were taken to check for pneumothorax, and I stayed for observation as per the protocol. I was sent home nearly five hours after arriving that morning. Stabbing pain upon inspiration continued the rest of the day. I noticed something else, too. When I bent to pick something up from the floor there was a "sloshing" sensation. Mostly, I rested and tried to take shallow breaths.
It wasn't long before the pathology report was ready. I braced myself for the "Attention! Attention! Attention!" banner at the top of the page, but there was none. It read, in part, this:
Preoperative diagnosis: Presumed metastatic colon CA
...
Postoperative diagnosis: Same
...
The sections show cores of pulmonary parenchyma with emphysematous changes. In addition, there are cores of essentially unremarkable splenic parenchyma. Within these there are some focal collections of foamy macrophages. These are usually associated with tissue destruction at some other location within the body.
I was more confused than ever. I wondered about the word "emphysematous" could the spots be emphysema? (That would've been pretty great news, considering.) I emailed a friend-doctor and asked him to go over the pathology report. He called me later that night after contacting both the pathologist and the interventionist radiologist listed on the report. He then revealed the jaw-dropping news that the doctor had inadvertently took a biopsy of my spleen! Gahhhh!
The instant the word "spleen" sunk in, I was acutely aware of exactly where my spleen is located. This was remarkable only because I had largely ignored the fact that I even had a spleen before that very second. Had I known prior to this happy conversation where in fact my spleen was, I probably could've figured out that day in the CT room that the radiologist was taking a sample of my spleen, but no, I had no idea. I tried to wrap my head around the fact that the I.R. had punctured my spleen...while I was awake...and...without the benefit of...spleen-numbing (which I'm pretty sure isn't even a thing). ack! ack! ack!
To laugh? To cry? A little rage, maybe?
I did a some of each. "Abnormal lung tissue," indeed. Splenic tissue would qualify as that. At least we knew that my spleen was cancer-free. ha! The worst part was that we still didn't know what was growing in my lungs.
I met with my oncologist, and she decided that it was time for another PET scan.
I lay on the "bed" of a CT scanner with my arms over my head, and in excruciating pain for reasons I didn't understand. The interventionist radiologist had just majestically declared to me and to the handful of assistants in the room that the needle biopsy of my left lung had concluded. My thoughts were, "I hurt. This hurts. What just happened?" But, no words came out. The doc vanished. Other people were talking about their plans for the weekend. They had no reason to think that anything was amiss; I had been fine until a minute or two ago. My scrambled brain didn't know what to make of any of it. I was unable to eke out a sound. It hurt too much.
Every breath felt like daggers were slicing into my lungs. I moved from the scanner to a gurney, trying not to breathe. They wheeled me to a busy area just outside the scanning room. The nurse came by and asked if I was in any pain. I nodded through tears. I tried to indicate that my shoulder hurt. She gave me a long, searching glance and then said, "I've never heard anyone say that before. Maybe it's because of the way we had you positioned, maybe your port has something to do with it."
They left me sitting upright on the gurney, my husband close by in a chair. Eventually, the stabbing happened only sometimes, which was a big improvement.
When the doctor stopped by some time afterward he mentioned that at least one of the "cores" appeared to him "by gross examination" to contain abnormal lung tissue. Really, really not a great time for this conversation. I never saw him again after that.
X-rays were taken to check for pneumothorax, and I stayed for observation as per the protocol. I was sent home nearly five hours after arriving that morning. Stabbing pain upon inspiration continued the rest of the day. I noticed something else, too. When I bent to pick something up from the floor there was a "sloshing" sensation. Mostly, I rested and tried to take shallow breaths.
It wasn't long before the pathology report was ready. I braced myself for the "Attention! Attention! Attention!" banner at the top of the page, but there was none. It read, in part, this:
Preoperative diagnosis: Presumed metastatic colon CA
...
Postoperative diagnosis: Same
...
The sections show cores of pulmonary parenchyma with emphysematous changes. In addition, there are cores of essentially unremarkable splenic parenchyma. Within these there are some focal collections of foamy macrophages. These are usually associated with tissue destruction at some other location within the body.
I was more confused than ever. I wondered about the word "emphysematous" could the spots be emphysema? (That would've been pretty great news, considering.) I emailed a friend-doctor and asked him to go over the pathology report. He called me later that night after contacting both the pathologist and the interventionist radiologist listed on the report. He then revealed the jaw-dropping news that the doctor had inadvertently took a biopsy of my spleen! Gahhhh!
The instant the word "spleen" sunk in, I was acutely aware of exactly where my spleen is located. This was remarkable only because I had largely ignored the fact that I even had a spleen before that very second. Had I known prior to this happy conversation where in fact my spleen was, I probably could've figured out that day in the CT room that the radiologist was taking a sample of my spleen, but no, I had no idea. I tried to wrap my head around the fact that the I.R. had punctured my spleen...while I was awake...and...without the benefit of...spleen-numbing (which I'm pretty sure isn't even a thing). ack! ack! ack!
To laugh? To cry? A little rage, maybe?
I did a some of each. "Abnormal lung tissue," indeed. Splenic tissue would qualify as that. At least we knew that my spleen was cancer-free. ha! The worst part was that we still didn't know what was growing in my lungs.
I met with my oncologist, and she decided that it was time for another PET scan.
Wednesday, May 27, 2015
The Story of a Needle Biopsy: Part 1
An interventional radiologist (I.R.) did an out-patient procedure on my lung called a needle biopsy. Since a few of the nodes in my lungs were just over a centimeter across, my oncologist, and the I.R. believed that obtaining a biopsy via "puncture" was possible. It would be far less invasive than the alternatives: open thoracic surgery, or lung wedge surgery, both of which require hospitalization. I was all for it; I wanted to settle the question of what was growing in my lungs.
Excerpts from a blast-o-gram below:
Sent: Oct 31, 2014 7:10 AM
Hello!
I have another procedure to share with you. If you ever need a lung biopsy, it's pretty likely that it won't hurt at all. That's what they told me anyway.
They were only mostly right.
I was greeted by a nurse in the radiology department. Vitals were taken, then she needed to start an I.V., "just in case". Unfortunately for me, she was not immediately successful. She blew a vein on the first try (ow!). The interventional radiologist came in to witness the next try, which also resulted in a blown vein (ow! again!). On the third try, the goal was achieved. Woo! She taped it down extra, super tight, which felt like over-compensation to me. Thank you. Now please go away.
The doc pulled up a wheel-y stool next to where I was, and opened up a laptop computer. Familiar images of my lungs appeared on the screen. He introduced himself then, and explained what he was planning do, which was to collect some lung tissue using a giant needle-like instrument. He showed us on the screen the nodule of choice (I knew it as Casamina). He assured me that I would be completely numb, and that I would probably only feel the first needle, which would administer the anesthetic.
...
They wheeled me to an adjoining room where the now-familiar CT machine waited. No contrast for me this time (hurray!). I was told to lie down in "Superman position". Right. That would be face down, with both arms above my head.
The I.R. came in and announced that he had changed his mind. He'd be going for a nodule on the left instead. (Jorge!) He would still approach through the back, so "no need to reposition". He started with lidocaine in a big needle and began numbing all the layers of…me.
I thought I'd be offered demerol or some other calming potion, but no. Nothing.
The doctor had me practice taking a "scan breath". The goal of this type of inspiration is to fill the lungs to the same volume each time. "Moving targets," he said, "are hard to hit." If my lungs were filled to the same volume each time, it would help him to predict the location of the nodule he was trying to biopsy. There was no camera involved; no live-video.
He placed a small, radio-opaque grid on my back, and got a scan of my lungs + grid so he knew where to position his instruments. He drew a target on my back with a marker, and disinfected a wide area around where he would be making an incision. Sterile sheets were draped. I was not able to see or feel what was happening, which was fine with me.
During the forty minutes that I was on the table, the machine would move me into and out of the scanner many, many times. Sometimes a recorded voice would direct me with an instruction to "Hold your breath", and after a few seconds it would command, "Breathe," just as happened during every other scan I've had. These times, I assume, were for alignment. Other times the doctor himself would say, "Take a breath like for a scan," and then he'd take a sample. Sometimes—and this was unsettling—he'd say "Stop breathing…now!," but never at a predictable moment. I was to remain silent and completely still, breathing as directed. I could do that.
Every time he collected a sample, the instrument made a loud clicking noise, but I felt no pain. I could feel a slight, grisly jostling though. He's pushing a gigantic hollow needle into my lung! Ack! Sometimes he would say, "Let's get a photo of that," and I'd be sent into the scanner again.
Three samples were taken without incident. The fourth and final one though, was a different story. I remained still and silent but suddenly I was thrown into torment. Fiery pain shot up my left side, seared its way to my left shoulder, and traveled all the way to and across my jaw--with every breath. I stayed still. Silent tears escaped from my tightly closed eyes. Then--even though my eyes were closed--everything went completely dark.
The next thing I knew, the doctor was bent over my ear proclaiming, "This biopsy is OVER!" I was sent into the scanner one last time.
Part 2 here.
Excerpts from a blast-o-gram below:
Sent: Oct 31, 2014 7:10 AM
Hello!
I have another procedure to share with you. If you ever need a lung biopsy, it's pretty likely that it won't hurt at all. That's what they told me anyway.
They were only mostly right.
I was greeted by a nurse in the radiology department. Vitals were taken, then she needed to start an I.V., "just in case". Unfortunately for me, she was not immediately successful. She blew a vein on the first try (ow!). The interventional radiologist came in to witness the next try, which also resulted in a blown vein (ow! again!). On the third try, the goal was achieved. Woo! She taped it down extra, super tight, which felt like over-compensation to me. Thank you. Now please go away.
The doc pulled up a wheel-y stool next to where I was, and opened up a laptop computer. Familiar images of my lungs appeared on the screen. He introduced himself then, and explained what he was planning do, which was to collect some lung tissue using a giant needle-like instrument. He showed us on the screen the nodule of choice (I knew it as Casamina). He assured me that I would be completely numb, and that I would probably only feel the first needle, which would administer the anesthetic.
...
They wheeled me to an adjoining room where the now-familiar CT machine waited. No contrast for me this time (hurray!). I was told to lie down in "Superman position". Right. That would be face down, with both arms above my head.
The I.R. came in and announced that he had changed his mind. He'd be going for a nodule on the left instead. (Jorge!) He would still approach through the back, so "no need to reposition". He started with lidocaine in a big needle and began numbing all the layers of…me.
I thought I'd be offered demerol or some other calming potion, but no. Nothing.
The doctor had me practice taking a "scan breath". The goal of this type of inspiration is to fill the lungs to the same volume each time. "Moving targets," he said, "are hard to hit." If my lungs were filled to the same volume each time, it would help him to predict the location of the nodule he was trying to biopsy. There was no camera involved; no live-video.
He placed a small, radio-opaque grid on my back, and got a scan of my lungs + grid so he knew where to position his instruments. He drew a target on my back with a marker, and disinfected a wide area around where he would be making an incision. Sterile sheets were draped. I was not able to see or feel what was happening, which was fine with me.
During the forty minutes that I was on the table, the machine would move me into and out of the scanner many, many times. Sometimes a recorded voice would direct me with an instruction to "Hold your breath", and after a few seconds it would command, "Breathe," just as happened during every other scan I've had. These times, I assume, were for alignment. Other times the doctor himself would say, "Take a breath like for a scan," and then he'd take a sample. Sometimes—and this was unsettling—he'd say "Stop breathing…now!," but never at a predictable moment. I was to remain silent and completely still, breathing as directed. I could do that.
Every time he collected a sample, the instrument made a loud clicking noise, but I felt no pain. I could feel a slight, grisly jostling though. He's pushing a gigantic hollow needle into my lung! Ack! Sometimes he would say, "Let's get a photo of that," and I'd be sent into the scanner again.
Three samples were taken without incident. The fourth and final one though, was a different story. I remained still and silent but suddenly I was thrown into torment. Fiery pain shot up my left side, seared its way to my left shoulder, and traveled all the way to and across my jaw--with every breath. I stayed still. Silent tears escaped from my tightly closed eyes. Then--even though my eyes were closed--everything went completely dark.
The next thing I knew, the doctor was bent over my ear proclaiming, "This biopsy is OVER!" I was sent into the scanner one last time.
Part 2 here.
Tuesday, May 26, 2015
Did I Hear a Shoe Drop?
In September, a year from the original diagnosis, it was time for another CT scan. As usual, I requested and received a CD of the images immediately after the procedure, then obsessively checked the patient portal for news of the written report. It was available just three days later.
When Patrick called me from work that day, I checked the portal while on the phone with him. It was available! I let him know it was there.
Me: It's here!
Him: You gonna read it?
Me: I'm chicken.
Him: Email it to me, and I will read it to you.
Me: Yeah, no. I will read it to you.
Dictated at < redacted > Hospital Medical Center
HISTORY: FOLLOW UP COLON CANCER.
...
FINDINGS: Interval increase in size of right lower lobe pulmonary nodule, which now measures 11 mm (series 4, image 43). Interval increase in size of additional right lower lobe pulmonary nodule... Interval increase in size of more superiorly located right lower lobe pulmonary nodules... Interval development of left upper lobe pulmonary nodule... Interval increase in size... Interval increase in size... Interval increase in size of left lower lobe pulmonary nodule, now measuring 11 mm (series 4, image 42)...
IMPRESSION:
1. Multiple pulmonary nodules... Findings are worrisome for progression of metastatic disease.
2. ...
Eight lung nodes were identified on the report, and they were growing. I freaked.
I made a panicked call to my oncologist. I was able to see her that day, thank goodness. This report taught me many lessons, the first of which was this: Don't read a potentially grave medical report until you have an appointment to discuss it with your doctor already in place. [See my PSA in this post.]
My doctor greeted Patrick and me with, "You've seen the report?" We had. As we discussed the findings, she carefully, and thoughtfully explained that she would not be convinced of metastasis until she had clinical evidence. Because my CEA was so low, it was plausible that something other than colon cancer was growing my lungs. It could be fungus, or maybe even lung cancer, ("which by the way we can treat very effectively," she offered in all sincerity). Until we knew what it was, it was impossible to know how best to treat it. She consulted with another specialist, and he agreed to attempt a needle biopsy of one of the nodes.
Since Patrick and I had a long-awaited trip planned for two weeks later, she insisted that we could deal with these new findings upon our return; the delay would be of no consequence. We went home and dove into all of my past radiology reports and read them with "new eyes", trying to make sense of the shocking news. We returned to the newest scan and opened its images on the computer.
A CT scan is a collection of hundreds of images, each representing a "slice" through the body. Every one of the images that make up the scan is identified with a series number, and an image number. The radiologist's report of that September became our Rosetta Stone. The reporting doc had noted in his write-up (see excerpt above) the specific images on which each nodule could be seen. By trial and error we figured out how to use the viewing software that was included with the scan images. Armed with the series and image numbers, Patrick and I clicked through the sections of my lungs from every available angle, identifying and measuring all eight nodes that had been referenced on the report.
One by one we loaded older scans' CDs and painstakingly poured over the images. At this time, we had six disks representing six different scans, either PET or CT. The oldest was from June, 2012--over a year before I was diagnosed. Patrick plotted the size of each node on a graph to track how they changed over time. So that he and I could discuss them more easily, I gave each node a name. (Weird, right? It gets even stranger: I used boy names for the left lung, and girl names for the right.) We studied the images for hours.
Me: Casamina was there way back in June!
Him: This one they called an "interval development"? It isn't.
Me: It isn't what?
Him: A development. It's on an earlier scan.
Me: You mean Julio?
Him: Yeah, him. Look at this...
We worked on separate computers, talking through everything we found. When we finished, each of us had a better understanding of the things in my lungs, but we still didn't know what they were. My oncologist recommended a needle biopsy, which could be done as an out-patient procedure at the hospital.
What I didn't know then is that a biopsy is only useful for confirming cancer. It doesn't prove an absence of cancer. If a biopsy comes back negative, it only means that no cancer cells were found in the sample of tissue that was tested. It reveals nothing about the surrounding tissue. In my case, the odds of the needle missing its target were pretty high--the nodules were little more than 10mm wide.
Trusting in the interventional radiologist's confidence that he could hit his mark, I scheduled the biopsy and hoped that the nodes would turn out to be something less repellent than colon cancer. Compared to metastatic colon cancer, even black lung disease would have sounded good to me.
When Patrick called me from work that day, I checked the portal while on the phone with him. It was available! I let him know it was there.
Me: It's here!
Him: You gonna read it?
Me: I'm chicken.
Him: Email it to me, and I will read it to you.
Me: Yeah, no. I will read it to you.
Dictated at < redacted > Hospital Medical Center
HISTORY: FOLLOW UP COLON CANCER.
...
FINDINGS: Interval increase in size of right lower lobe pulmonary nodule, which now measures 11 mm (series 4, image 43). Interval increase in size of additional right lower lobe pulmonary nodule... Interval increase in size of more superiorly located right lower lobe pulmonary nodules... Interval development of left upper lobe pulmonary nodule... Interval increase in size... Interval increase in size... Interval increase in size of left lower lobe pulmonary nodule, now measuring 11 mm (series 4, image 42)...
IMPRESSION:
1. Multiple pulmonary nodules... Findings are worrisome for progression of metastatic disease.
2. ...
Eight lung nodes were identified on the report, and they were growing. I freaked.
I made a panicked call to my oncologist. I was able to see her that day, thank goodness. This report taught me many lessons, the first of which was this: Don't read a potentially grave medical report until you have an appointment to discuss it with your doctor already in place. [See my PSA in this post.]
My doctor greeted Patrick and me with, "You've seen the report?" We had. As we discussed the findings, she carefully, and thoughtfully explained that she would not be convinced of metastasis until she had clinical evidence. Because my CEA was so low, it was plausible that something other than colon cancer was growing my lungs. It could be fungus, or maybe even lung cancer, ("which by the way we can treat very effectively," she offered in all sincerity). Until we knew what it was, it was impossible to know how best to treat it. She consulted with another specialist, and he agreed to attempt a needle biopsy of one of the nodes.
Since Patrick and I had a long-awaited trip planned for two weeks later, she insisted that we could deal with these new findings upon our return; the delay would be of no consequence. We went home and dove into all of my past radiology reports and read them with "new eyes", trying to make sense of the shocking news. We returned to the newest scan and opened its images on the computer.
A CT scan is a collection of hundreds of images, each representing a "slice" through the body. Every one of the images that make up the scan is identified with a series number, and an image number. The radiologist's report of that September became our Rosetta Stone. The reporting doc had noted in his write-up (see excerpt above) the specific images on which each nodule could be seen. By trial and error we figured out how to use the viewing software that was included with the scan images. Armed with the series and image numbers, Patrick and I clicked through the sections of my lungs from every available angle, identifying and measuring all eight nodes that had been referenced on the report.
One by one we loaded older scans' CDs and painstakingly poured over the images. At this time, we had six disks representing six different scans, either PET or CT. The oldest was from June, 2012--over a year before I was diagnosed. Patrick plotted the size of each node on a graph to track how they changed over time. So that he and I could discuss them more easily, I gave each node a name. (Weird, right? It gets even stranger: I used boy names for the left lung, and girl names for the right.) We studied the images for hours.
Me: Casamina was there way back in June!
Him: This one they called an "interval development"? It isn't.
Me: It isn't what?
Him: A development. It's on an earlier scan.
Me: You mean Julio?
Him: Yeah, him. Look at this...
We worked on separate computers, talking through everything we found. When we finished, each of us had a better understanding of the things in my lungs, but we still didn't know what they were. My oncologist recommended a needle biopsy, which could be done as an out-patient procedure at the hospital.
What I didn't know then is that a biopsy is only useful for confirming cancer. It doesn't prove an absence of cancer. If a biopsy comes back negative, it only means that no cancer cells were found in the sample of tissue that was tested. It reveals nothing about the surrounding tissue. In my case, the odds of the needle missing its target were pretty high--the nodules were little more than 10mm wide.
Trusting in the interventional radiologist's confidence that he could hit his mark, I scheduled the biopsy and hoped that the nodes would turn out to be something less repellent than colon cancer. Compared to metastatic colon cancer, even black lung disease would have sounded good to me.
Friday, May 22, 2015
Yep, Radiation
Early in May, just two months out from the end of chemotherapy, I found myself in the care of another kind of doctor, the radiation oncologist.
Of the two specialists that I consulted, I chose to be treated by the doc who planned to use a narrower radiation beam on a smaller target, namely, the suture line at the top of the bladder. He believed that I would glean as great a benefit with this approach, versus another doctor's more aggressive plan. Even better news, he and my medical oncologist agreed that I could skip the chemotherapy. I'm not sure why they decided this, but I didn't question it.
I showed up at the radiation center for a simulation appointment. Here's how I described it in the blast-o-gram:
Sent: Friday, May 9, 2014 11:28 AM
... Simulation is where they attempt to align a body to the machine in such a way that it will be repeatable throughout the course of treatment. They used a marvel of biomedical technology to make a mold of my legs from the knees down. It looked and felt like an ordinary pillow to me, but through some magic it was transformed into a rock-hard, solid casting of my legs. That was where the fun stopped.
Next came tattoos. First, the nurses drew targets on me with markers. They apparently changed their minds at least once, because they drew way more targets than they needed. haha. Once they were happy with the targets, the nurse said, "Prepare yourself, but don't move. I'll be quick." She then stabbed me with a gigantic needle in three locations. It was surprisingly painful!
Now, I am a marked woman.
I ended up having eighteen radiation treatments, for a grand total of 4,281 cGy (cGy=centiGrays, a measure of the dose of radiation). Every weekday, I'd drive to the clinic. To save time, I'd arrive "scan-ready", which meant that I was wearing clothing with no metal in or on it. Because of this, I could skip changing into a hospital gown and proceed straight to the waiting room. When it was my turn, I'd hop up onto the moveable table, settle my legs into their form-fitting castings, and lie still while the techs aligned my body to the machine. My three tattoos were lined up with beams projected by the huge radiation-delivering machine. Over the next four minutes or so, I would lie still as the giant metal machine rotated all around the narrow metal table, shooting radiation at me from various angles.
I experienced very few side-effects, and only towards the final treatments. Getting to the clinic for so many days in a row was tedious, but hardly anything to complain about. By the end of treatment, my car practically drove itself there. I found myself on the path to the radiation clinic more than once after treatment ended (I blamed the car).
I would coast along during that summer, catching my boys up on the lessons we had missed due to my chemo appointments in the previous months. My memory was horrible. I found that I could no longer compute my sixth grade son's math problems in my head. I couldn't do spelling very well, either. Everything I needed to remember had to be written down or it was lost forever. I hoped and longed for the day when my brain would revert back to its former ability. I think I'm close now, though I discover gaps now and then.
At this time my fingers were still numb, and my feet too. I still couldn't button things. I couldn't tell if things like laundry were wet or dry. I even needed help to put in earrings. Nevertheless, I was thrilled to be finished with treatment.
The summer went by too fast, and unfortunately, September brought with it--as it had the previous year--some dire news.
Of the two specialists that I consulted, I chose to be treated by the doc who planned to use a narrower radiation beam on a smaller target, namely, the suture line at the top of the bladder. He believed that I would glean as great a benefit with this approach, versus another doctor's more aggressive plan. Even better news, he and my medical oncologist agreed that I could skip the chemotherapy. I'm not sure why they decided this, but I didn't question it.
I showed up at the radiation center for a simulation appointment. Here's how I described it in the blast-o-gram:
Sent: Friday, May 9, 2014 11:28 AM
... Simulation is where they attempt to align a body to the machine in such a way that it will be repeatable throughout the course of treatment. They used a marvel of biomedical technology to make a mold of my legs from the knees down. It looked and felt like an ordinary pillow to me, but through some magic it was transformed into a rock-hard, solid casting of my legs. That was where the fun stopped.
Next came tattoos. First, the nurses drew targets on me with markers. They apparently changed their minds at least once, because they drew way more targets than they needed. haha. Once they were happy with the targets, the nurse said, "Prepare yourself, but don't move. I'll be quick." She then stabbed me with a gigantic needle in three locations. It was surprisingly painful!
Now, I am a marked woman.
I ended up having eighteen radiation treatments, for a grand total of 4,281 cGy (cGy=centiGrays, a measure of the dose of radiation). Every weekday, I'd drive to the clinic. To save time, I'd arrive "scan-ready", which meant that I was wearing clothing with no metal in or on it. Because of this, I could skip changing into a hospital gown and proceed straight to the waiting room. When it was my turn, I'd hop up onto the moveable table, settle my legs into their form-fitting castings, and lie still while the techs aligned my body to the machine. My three tattoos were lined up with beams projected by the huge radiation-delivering machine. Over the next four minutes or so, I would lie still as the giant metal machine rotated all around the narrow metal table, shooting radiation at me from various angles.
I experienced very few side-effects, and only towards the final treatments. Getting to the clinic for so many days in a row was tedious, but hardly anything to complain about. By the end of treatment, my car practically drove itself there. I found myself on the path to the radiation clinic more than once after treatment ended (I blamed the car).
I would coast along during that summer, catching my boys up on the lessons we had missed due to my chemo appointments in the previous months. My memory was horrible. I found that I could no longer compute my sixth grade son's math problems in my head. I couldn't do spelling very well, either. Everything I needed to remember had to be written down or it was lost forever. I hoped and longed for the day when my brain would revert back to its former ability. I think I'm close now, though I discover gaps now and then.
At this time my fingers were still numb, and my feet too. I still couldn't button things. I couldn't tell if things like laundry were wet or dry. I even needed help to put in earrings. Nevertheless, I was thrilled to be finished with treatment.
The summer went by too fast, and unfortunately, September brought with it--as it had the previous year--some dire news.
Thursday, May 21, 2015
Radiation?
Patrick and I visited the clinic soon after the PET scan to get the
oncologist's take on it. I was hoping to hear more happy words from her like,
"You're done with this place, go home and live your life." But no, that
wasn't what I heard.
My doctor told me that she wanted me to consult with a radiation oncologist. I couldn't believe my ears--she wanted me to pursue further treatment? Was chemotherapy not enough? When would it end? I left disheartened, clutching a scrap of paper with yet another doctor's contact information scrawled across it.
From the first radiation oncologist, I learned that there were no studies done in cases like mine. His opinion was that I would receive an anti-cancer benefit of maybe 15%, if chemo was given concurrently with radiation targeted specifically at the top of the bladder, where the original tumor had infiltrated.
A second opinion at a different hospital suggested the same potential benefit, but with a much more horrific list of side-effects owing to this new doc's more aggressive approach. She would target not only the suture site, but the entire "surgical bed". Side effects included night sweats and hot flashes due to the ovaries' destruction, chronic diarrhea, and a constant feeling that a urinary tract infection was pending. Top all of that off with fatigue and nausea from the chemo this doctor would also recommend.
Two words: No Way.
I called my oncologist to ask about the chemo-part of the equation. Throughout the five weeks of radiation, I would receive fluorouracil via the harpoon + pump for six out of seven days. I thought I mis-heard her--six out of seven?! Who could do that? I couldn't fathom lugging around that chattering thing, attached by a harpoon in my chest for six days every week! Sure, the drug would be at a lower dose than I had taken previously, but the equipment itself, and the skin-blistering Tegaderm dressing that I'd have to use six out of seven days was the bigger concern at that moment. I asked about taking chemo pills (xeloda) instead, but she maintained her stance that the pump would be a more effective delivery method.
In a this-can't-be-happening sort of stupor, I hung up the phone. Again, all I could think was: No Way!
My doctor told me that she wanted me to consult with a radiation oncologist. I couldn't believe my ears--she wanted me to pursue further treatment? Was chemotherapy not enough? When would it end? I left disheartened, clutching a scrap of paper with yet another doctor's contact information scrawled across it.
From the first radiation oncologist, I learned that there were no studies done in cases like mine. His opinion was that I would receive an anti-cancer benefit of maybe 15%, if chemo was given concurrently with radiation targeted specifically at the top of the bladder, where the original tumor had infiltrated.
A second opinion at a different hospital suggested the same potential benefit, but with a much more horrific list of side-effects owing to this new doc's more aggressive approach. She would target not only the suture site, but the entire "surgical bed". Side effects included night sweats and hot flashes due to the ovaries' destruction, chronic diarrhea, and a constant feeling that a urinary tract infection was pending. Top all of that off with fatigue and nausea from the chemo this doctor would also recommend.
Two words: No Way.
I called my oncologist to ask about the chemo-part of the equation. Throughout the five weeks of radiation, I would receive fluorouracil via the harpoon + pump for six out of seven days. I thought I mis-heard her--six out of seven?! Who could do that? I couldn't fathom lugging around that chattering thing, attached by a harpoon in my chest for six days every week! Sure, the drug would be at a lower dose than I had taken previously, but the equipment itself, and the skin-blistering Tegaderm dressing that I'd have to use six out of seven days was the bigger concern at that moment. I asked about taking chemo pills (xeloda) instead, but she maintained her stance that the pump would be a more effective delivery method.
In a this-can't-be-happening sort of stupor, I hung up the phone. Again, all I could think was: No Way!
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