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.
Thursday, May 28, 2015
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!
Wednesday, May 20, 2015
PET Scan 6 mos. Post-Dx Results
Two weeks after chemotherapy ended was just about six months from my last PET scan. My oncologist ordered another one at the beginning of April.
:: begin Sleen's PSA ::
Whenever a scan is done, I recommend that you request a copy of the images for your own records. It makes no difference if you are able to interpret them yourself. One day someone (maybe even you) may need to refer to those images, and it'll save time and frustration if you've got them handy.
Besides the images themselves, I always stalk the hospital's online patient portal for the posting of the radiology report. At my hospital it usually only takes a couple of days before the document is available for download. I recommend that all cancer patients get a copy of every scan report. It represents the radiologist's impression of the collection of images that make up the scan.
Be warned that reading the results of your scan may be upsetting. To avoid the horrible scenario of reading dire news about your health and then making a frantic plea for an appointment with your doctor, sobbing over the phone-line into the handset of an unsuspecting scheduler, only to find that the next available time slot is two weeks away, it would be smart to make that post-scan consultation before you read the report.
The point is, you must get the report even if it's bad news. To protect yourself from well, yourself, be sure to only read that thing if you're soon to see somebody who can make the best sense of it. Namely, your oncologist.
:: end Public Service Announcement ::
My scan report hit me as a bit pessimistic, especially given the doctor's hopeful statements from a few weeks earlier. I did not call the clinic in distress (this time), even though I had been expecting words like "no evidence of disease" to appear on the document, and they didn't. Instead the radiologist's report identified me as "Stage 4" in no uncertain terms. Excerpts follow:
Dictated at < redacted > Hospital Medical Center
HISTORY: THIS IS A 48-YEAR-OLD FEMALE WHO IS STATUS POST SIGMOID RESECTION FOR STAGE 4 COLON CANCER. THE PATIENT IS CURRENTLY RECEIVING CHEMOTHERAPY AND IS IN FOR FOLLOW UP.
"Currently receiving" was not exactly accurate, since my last chemotherapy treatment happened a month prior. And "Stage 4" was a complete shock to see. Last I knew, I was stage IIIc. Did my staging get changed without my knowledge?
"Well," I thought, "maybe there is some mistake."
Reading on:
IMPRESSION:
1. Currently there are no hypermetabolic foci noted in the neck, chest abdomen or pelvis to suggest hypermetabolic metastases or recurrent neoplasm.
Nothing glowing, not metastatic. Item 1 made the Stage 4 designation all the more puzzling.
2. Only the largest nodule in the posterior right lower lobe is visualized and this shows no FDG uptake... The size of many of these nodules is also below the sensitivity of PET. It could be that more nodes were present, but undetectable due to their small size. Well, that's disturbing.
3. There is no change in left renal calculi and dilatation of the left pelvicaliceal system.
Chemo does nothing for kidney stones. Crud.
Item 2 above referred to my lungs. Tiny spots had been noted there since at least a year prior to my diagnosis. It was conceivable that the spots were nothing to be concerned about, yet the radiologist's last sentence gave me pause. Was it an attempt to redirect responsibility, or was there a possibility that I hadn't been cured after all? It was an unsettling dichotomy.
Typically, if colon cancer were to metastasize, the disease would settle first in the liver, not the lungs. My imagination spun itself into all sorts of scenarios about what might or might not have been happening in my lungs. Ultimately, there was no practical way to know for certain. From the evidence we had at that moment, everything looked great. I decided to rejoice for the good news we were given, and made a conscious effort to not project too far into the future. I had today. I praised God for today.
St. Pio of Pietrelcina's advice to "Pray, Hope, and Don't Worry" was becoming a way of life.
:: begin Sleen's PSA ::
Whenever a scan is done, I recommend that you request a copy of the images for your own records. It makes no difference if you are able to interpret them yourself. One day someone (maybe even you) may need to refer to those images, and it'll save time and frustration if you've got them handy.
Besides the images themselves, I always stalk the hospital's online patient portal for the posting of the radiology report. At my hospital it usually only takes a couple of days before the document is available for download. I recommend that all cancer patients get a copy of every scan report. It represents the radiologist's impression of the collection of images that make up the scan.
Be warned that reading the results of your scan may be upsetting. To avoid the horrible scenario of reading dire news about your health and then making a frantic plea for an appointment with your doctor, sobbing over the phone-line into the handset of an unsuspecting scheduler, only to find that the next available time slot is two weeks away, it would be smart to make that post-scan consultation before you read the report.
The point is, you must get the report even if it's bad news. To protect yourself from well, yourself, be sure to only read that thing if you're soon to see somebody who can make the best sense of it. Namely, your oncologist.
:: end Public Service Announcement ::
My scan report hit me as a bit pessimistic, especially given the doctor's hopeful statements from a few weeks earlier. I did not call the clinic in distress (this time), even though I had been expecting words like "no evidence of disease" to appear on the document, and they didn't. Instead the radiologist's report identified me as "Stage 4" in no uncertain terms. Excerpts follow:
Dictated at < redacted > Hospital Medical Center
HISTORY: THIS IS A 48-YEAR-OLD FEMALE WHO IS STATUS POST SIGMOID RESECTION FOR STAGE 4 COLON CANCER. THE PATIENT IS CURRENTLY RECEIVING CHEMOTHERAPY AND IS IN FOR FOLLOW UP.
"Currently receiving" was not exactly accurate, since my last chemotherapy treatment happened a month prior. And "Stage 4" was a complete shock to see. Last I knew, I was stage IIIc. Did my staging get changed without my knowledge?
"Well," I thought, "maybe there is some mistake."
Reading on:
IMPRESSION:
1. Currently there are no hypermetabolic foci noted in the neck, chest abdomen or pelvis to suggest hypermetabolic metastases or recurrent neoplasm.
Nothing glowing, not metastatic. Item 1 made the Stage 4 designation all the more puzzling.
2. Only the largest nodule in the posterior right lower lobe is visualized and this shows no FDG uptake... The size of many of these nodules is also below the sensitivity of PET. It could be that more nodes were present, but undetectable due to their small size. Well, that's disturbing.
3. There is no change in left renal calculi and dilatation of the left pelvicaliceal system.
Chemo does nothing for kidney stones. Crud.
Item 2 above referred to my lungs. Tiny spots had been noted there since at least a year prior to my diagnosis. It was conceivable that the spots were nothing to be concerned about, yet the radiologist's last sentence gave me pause. Was it an attempt to redirect responsibility, or was there a possibility that I hadn't been cured after all? It was an unsettling dichotomy.
Typically, if colon cancer were to metastasize, the disease would settle first in the liver, not the lungs. My imagination spun itself into all sorts of scenarios about what might or might not have been happening in my lungs. Ultimately, there was no practical way to know for certain. From the evidence we had at that moment, everything looked great. I decided to rejoice for the good news we were given, and made a conscious effort to not project too far into the future. I had today. I praised God for today.
St. Pio of Pietrelcina's advice to "Pray, Hope, and Don't Worry" was becoming a way of life.
Tuesday, May 19, 2015
Treatment #13, The One That Wasn't
It was Wednesday of a "recovery" week, and Patrick and I were at the
clinic for the fourth time since the previous treatment. I was there to
receive a hydration infusion that was, we hoped, going to help my liver
to recover from the previous chemo treatment.
I sat while a nurse took my blood pressure, and the oncologist came by with my chart. She held Friday's lab report, and showed me where it indicated that one liver enzyme was twice-normal, and another was 2.5 times normal. She wanted to run the same test again that day, to check whether hydration and time were having any beneficial effect on my liver. She planned for treatment thirteen to be given on the following Monday, but as always, only if my liver and my blood could handle it.
When the hydration infusion was over, the doctor followed us from the treatment area to the empty waiting room. She mentioned that we now had six months of steadily dropping CEA levels (CEA is a tumor-marker for colon cancer), and no evidence of disease on the PET scan from September.
We three stood there alone by the exit when the oncologist remarked that she was "very impressed" with my case. She asked if I had been asking for prayers. I informed her that I ask everyone to pray for me.
The doc nodded, and smiled, and then she offered, "I think you might be cured!" She made a few more comments, and we parted ways. Patrick and I fairly floated out of the office.
Excerpts from a joyous update:
Sent: March 12, 2014 6:12 p.m.
Greetings, Prayer Warriors!
I had more blood drawn, and then the doctor told me...are you ready?...She told me she thinks I'm CURED!
If I could feel my feet, I'd be jumping for joy : )
So! One more treatment, next Monday. [My oncologist] is a stickler for following protocol. I'm mentally preparing for a rough post-chemo week, but then DONE. Done.Done.AllTheWayDONEwithchemo. The doc even said I won't need maintenance drugs. What a great surprise that was! AM I DREAMING?!?!
Going forward there will be monthly blood draws to check my CEA level, and scans...I don't know how frequently, probably whatever insurance allows. [The doc] plans to "watch very closely". She said, "You kicked it!"
I knew that to be considered medically cured, I'd need clear scans over the next eight years. We understood that the doctor's statement was not a clean bill of health, or even the promise of one to come, but it encouraged us tremendously.
The disappointment of enduring a thirteenth treatment when only twelve were expected vanished. It was replaced with glee. My spirit bounced through the rest of the week, across the weekend, and on into the clinic for number thirteen on Monday. Once inside the infusion room, I tried to curb my exuberance out of respect for the patients who probably weren't feeling as great as I did just then.
On that morning--it was St. Patrick's Day--the harpoon was once again jammed into the port, facilitating the route that led straight to my heart. The pre-chemo anti-nausea meds dripped from an I.V. bag that hung above me as I tried to settle myself in the recliner. This would be the last chemo infusion. I could hardly believe it.
Unexpectedly, my oncologist walked over to where I sat to deliver the news that my liver enzymes were higher than they'd ever been before. One was almost four-times normal. Another was over five-times normal. "There can be no doubt," she observed, "that this is due to liver toxicity." She cancelled the treatment. My contaminated liver and I were sent home. No chemotherapy would occur that day, or any day. It was over!
Here's an excerpt from that day's blast-o-gram:
Cancelled! Wooo! The harpoon came out, a band-aid was slapped on, and they sent us on our merry way. I'm not going back to the clinic until MONDAYYYYYYY...and it won't be for a treatment!
No thirteenth treatment? I was overjoyed. I would not be visiting the clinic that week for injections, hydration, iron, or anything. I could stay at home and get on with the business of recovery.
Next step is for the insurance company to agree to a PET scan, which is what the doctor wants, vs. a CT scan, which is what insurance is likely to authorize instead.
LET THE RECOVERY BEGIN! To God Be the Glory!!!!!!!!!!! Now and Forever.
Amen!
MUCH LOVE, and lots of happy shouting...
Celine
Soon after, we took a celebratory trip to Washington, D.C. Why the nation's capitol? Blame it on homeschooling. I wanted the kids to see the monuments and museums.
I sat while a nurse took my blood pressure, and the oncologist came by with my chart. She held Friday's lab report, and showed me where it indicated that one liver enzyme was twice-normal, and another was 2.5 times normal. She wanted to run the same test again that day, to check whether hydration and time were having any beneficial effect on my liver. She planned for treatment thirteen to be given on the following Monday, but as always, only if my liver and my blood could handle it.
When the hydration infusion was over, the doctor followed us from the treatment area to the empty waiting room. She mentioned that we now had six months of steadily dropping CEA levels (CEA is a tumor-marker for colon cancer), and no evidence of disease on the PET scan from September.
We three stood there alone by the exit when the oncologist remarked that she was "very impressed" with my case. She asked if I had been asking for prayers. I informed her that I ask everyone to pray for me.
The doc nodded, and smiled, and then she offered, "I think you might be cured!" She made a few more comments, and we parted ways. Patrick and I fairly floated out of the office.
Excerpts from a joyous update:
Sent: March 12, 2014 6:12 p.m.
Greetings, Prayer Warriors!
I had more blood drawn, and then the doctor told me...are you ready?...She told me she thinks I'm CURED!
If I could feel my feet, I'd be jumping for joy : )
So! One more treatment, next Monday. [My oncologist] is a stickler for following protocol. I'm mentally preparing for a rough post-chemo week, but then DONE. Done.Done.AllTheWayDONEwithchemo. The doc even said I won't need maintenance drugs. What a great surprise that was! AM I DREAMING?!?!
Going forward there will be monthly blood draws to check my CEA level, and scans...I don't know how frequently, probably whatever insurance allows. [The doc] plans to "watch very closely". She said, "You kicked it!"
I knew that to be considered medically cured, I'd need clear scans over the next eight years. We understood that the doctor's statement was not a clean bill of health, or even the promise of one to come, but it encouraged us tremendously.
The disappointment of enduring a thirteenth treatment when only twelve were expected vanished. It was replaced with glee. My spirit bounced through the rest of the week, across the weekend, and on into the clinic for number thirteen on Monday. Once inside the infusion room, I tried to curb my exuberance out of respect for the patients who probably weren't feeling as great as I did just then.
On that morning--it was St. Patrick's Day--the harpoon was once again jammed into the port, facilitating the route that led straight to my heart. The pre-chemo anti-nausea meds dripped from an I.V. bag that hung above me as I tried to settle myself in the recliner. This would be the last chemo infusion. I could hardly believe it.
Unexpectedly, my oncologist walked over to where I sat to deliver the news that my liver enzymes were higher than they'd ever been before. One was almost four-times normal. Another was over five-times normal. "There can be no doubt," she observed, "that this is due to liver toxicity." She cancelled the treatment. My contaminated liver and I were sent home. No chemotherapy would occur that day, or any day. It was over!
Here's an excerpt from that day's blast-o-gram:
Cancelled! Wooo! The harpoon came out, a band-aid was slapped on, and they sent us on our merry way. I'm not going back to the clinic until MONDAYYYYYYY...and it won't be for a treatment!
No thirteenth treatment? I was overjoyed. I would not be visiting the clinic that week for injections, hydration, iron, or anything. I could stay at home and get on with the business of recovery.
Next step is for the insurance company to agree to a PET scan, which is what the doctor wants, vs. a CT scan, which is what insurance is likely to authorize instead.
LET THE RECOVERY BEGIN! To God Be the Glory!!!!!!!!!!! Now and Forever.
Amen!
MUCH LOVE, and lots of happy shouting...
Celine
Soon after, we took a celebratory trip to Washington, D.C. Why the nation's capitol? Blame it on homeschooling. I wanted the kids to see the monuments and museums.
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