Good-Bye, Casamina

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.

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.

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.

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.

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.

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.

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!

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.

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.

Treatment #12

I got some pretty dreadful news just before treatment number twelve.  My doctor wanted me to have a thirteenth treatment.  I was incredibly disappointed.  The goal I'd been striving for for so long had been moved!  Emotionally, I didn't know how I could face another treatment.  It felt like a cruel joke.

Writing it out helped me to deal with the blow.

Sent:  Monday, Mar 3, 2014 at 7:18 AM

Greetings!

I so wish I could report that today is my last chemo day.  It was supposed to be!  I found out on Friday that it is not.  [My oncologist] wants me to have a thirteenth treatment, to make up for the skipped oxaliplatin in treatment #3.  "Twelve of oxaliplatin is the standard of care, even if there are some skips along the way," she said.  So.  Thirteen treatments for me.  If it goes as planned, my last treatment will be on St. Patrick's Day.

Livers...wow.  Those things are temperamental!  Or maybe it's just mine.  Also, my blood is not good.  Not good!  What to do?  Last week, I got three infusions of saline, three neupogen injections, and two infusions of iron.  All this to get me ready for today's treatment.  The hydration seems to be the reason my liver enzymes went down (yay!) according to last Wednesday's lab report.  Doc said to "Keep up with the apples though--you never know."

Every two weeks I was asked the same exhaustive list of questions.  "Any pain?  Any fevers?  Mouth sores?  ...and on and on.  When the nurse got to the part about "numbness or tingling in hands or feet", I answered an enthusiastic, "Yes!"

She peered at me sideways over her clipboard, then asked, "Is it more than a couple times a day?"
Me:  It's almost constant now.

Nurse:  Are you taking your blah-blah-blah (drug name)?

Me:  What?  No.  What is that?

Nurse:  It's a drug that will help to stop neuropathy

Me:  [blank stare]

Nurse:  You filled the prescription.

Me:  I did?  Oh.  OHHHHHhhhh. [light bulb]  Is that the stuff that had "May cause suicidal thoughts" as one of the side-effects? 

Nurse: [nods]

Me:  Yeah, I threw that away.

Nurse:  You threw it away?

Me:  I didn't want to risk it.  Cancer is enough, who needs suicidal thoughts on top of that?  I'm almost done with chemo.  Does it even matter now?

Nurse:  The chemo drugs will stay in your system for up to four months after the last treatment.  Your neuropathy could be permanent.  This drug can help.  I'm going to see if you have any refills, and then you take it, OK?

Me:  Um.  OK?  I guess.  I'll take it.

The drug referred to above was gabapentin.  I tried it for a few days, but it made me incredibly drowsy.  Driving while on that was out of the question.  I had to stop taking it; it was making my ability to function worse, not better.  Into the trash it went.

After sending off the blast-o-gram to update my friends and family, Patrick and I left the house for treatment twelve at the clinic.

Ten days after that, we received the biggest shock yet.  My oncologist would utter the words, "I think you might be cured."  We would find out later that the miserable cancer had tricked us all, but at the time we felt like we owned the moon.

The Flurry That Was Treatment #11

Toward the end of chemotherapy things got really hairy at home.  My liver was a mess, and so extra clinic visits for "maintenance" were shoe-horned into already-packed weeks.  My doc ordered several hydration procedures, hoping to get my uncooperative liver to detox in time for treatment eleven.  This meant 2 to 3 hours of infusions, not to mention the drive, three times per week.  I did not dare attempt bringing the boys to these appointments (we home-school, so they're with me all day, every day).  There aren't enough Pokemon cards and milkshakes in the world to make that scenario work.

Thankfully, our friends rallied, caring for the boys when I wasn't able to.  Also great:  the boys loved playing at other people's houses.  Had any one of them protested about leaving me, my heart probably would've broken on the spot.  I am (we are) blessed with amazing friends who made accepting their help easy.

After witnessing what could happen during an infusion, Patrick was even more determined to not miss a chemo appointment.  We showed up on Monday morning, but despite the hydration sessions, my liver enzymes were too high to proceed with treatment eleven.  A nurse drew my blood and sent us home.  Pending the results of that blood work, I'd be asked to come back the next day.

The next day I updated friends and family from the infusion room.

Sent: February 18, 2014 2:13 PM
After much discussion, [my oncologist] is going ahead with #11 today, including oxaliplatin!  She initially wanted to skip the OX altogether today, but ultimately decided to forge ahead.  Many more trips for hydration will be needed...

Further complicating our lives at this time was the record-breaking snowfall.  The area was in the midst of one of its snowiest winters since 1880.  Getting to appointments was anything but easy, but everyone we knew was pulling for us.  We continually offered prayers of thanksgiving for their presence in our lives.

Thank You again, for your prayers, acts of kindness and the other many ways you help.  It is very humbling to be so needy, but we are very grateful for all of you.  This journey is not one that I would wish on anyone, but knowing you're all "there" for us makes it bearable.

What a blessing it was to know that we were not alone.

Chemotherapy Hates Me

On Thursday of treatment week ten, I had an annual physical that included a fasting blood draw.  By the time the dinner hour rolled around that evening, I had been fasting for over fifteen hours.  Nausea combined with an empty stomach had me feeling "off".  I felt weak and clammy.  Dinner was OK but the aftermath was horrific.  I seriously considered sleeping on the bathroom floor.

The next morning, a Friday, I was due at the clinic for a neupogen injection.  Once there, I enjoined my boys to "behave...well", intuiting the need to be specific.  I was ushered to the back and seated for a blood pressure check.  The nurse stood off a bit, silently taking stock of me for several uncomfortable moments.  Warily, she offered the assessment, "You look bedraggled."

"Um...yes.  I am bedraggled.  That is a good word for it," I muttered.  I then relayed the prior evening's development, whereupon both the nurse and the doctor bombarded me with advice, admonitions, and warnings.  I wasn't prepared for them to treat diarrhea as a Big Hairy Deal, but they clearly did.  Or maybe I looked worse than I thought.

The nurse exclaimed, "Immodium!  You need immodium!" and hurried off to retrieve it.

"Food!  You need food and drink!" recommended the doc, as she vanished to gather pretzels and water from the staff lunchroom.  She then promptly offered a prescription for potassium, in the form of a pill the size of my thumb.  Warnings of a possible hospital stay were given, followed by explanations of blood chemistry and worrisome signs to watch for.  I was to go home, drink as much as I possibly could, and rest, rest, rest.

I managed to avoid a hospital stay, and did a lot of resting over the weekend.

New side-effects appeared.  What felt like a sustained electric shock moved through my feet.  It seemed to start at the ankles, and then it swooshed through both feet at the same time, all the way to my toes.  It didn't hurt, and it lasted only a second, but it took me off guard.  This happened maybe twenty times each day.  Neuropathy in my feet had begun.  It would get worse.

My fingers were affected by neuropathy too, from the fingertips back just beyond the first knuckle.  It was painful to write, and impossible to button things.  Tying shoestrings was difficult and frustrating.  Aside from being painful, it felt like my fingers had expanded; they seemed to get in the way of themselves, like I was wearing invisible gloves.  I dropped stuff a lot.  I was afraid to use knives.

Fortunately, I could still type, despite neuropathy.  I updated friends and family about one of the nurse's suggestions for de-toxing my liver between treatments.  She recommended that I drink apple cider vinegar, the murkier, the better:

I was to mix of 2 TB of apple-cider vinegar into 8 oz. of water, then drink it down once or twice daily.  I added a liberal amount of unauthorized honey to the glass as well. 

I would like to tell you that the elixir is nothing short of a delight, however that would be a big, fat lie.  What it is actually, is a method for disintegrating the back of your throat.  Given enough time, I'm pretty sure it would strip all the enamel off of your teeth, too.  In a word:  Yuck.

When I next met the nurse, just two days later, I reported that my entire biological system had voted "No" to apple cider vinegar.  I tried it two or three times, but instead of getting easier, drinking the stuff got even more difficult.  She then suggested that I drink 4 oz. of minimally processed apple juice every morning instead.  This I did, happily, almost every day.

Only two treatments were left.  I couldn't feel my fingers, my feet were wigging out, my liver was angry and my hair was getting thinner and thinner.  I had no energy, and my brain was...different.  Would I make it to number twelve?

What Not To Say

A couple of days after treatment number ten I had an appointment for a routine physical with my general practitioner.  Given the almost-daily attention that my health was getting from the staff at the oncology clinic, it seemed superfluous to be getting an annual physical.  Nonetheless, the insurance company mandated it, and I wanted very much to keep the bill-payers happy.

The physical was mostly uneventful.  The doc disclosed that from the medical reports he had received from oncology, it appeared that I was doing "remarkably well".  Then to my utter shock he revealed that, "Back in September, [he] wasn't sure [I'd] pull through, given the stage of disease."

I am no doctor, but it seems obvious to me that when you are minding the health of a body that is not your own, care must be taken to not cross that sometimes hard-to-see line between thoughts that are appropriate to say out loud, and those which should remain unspoken at all cost.

I quickly decided that assuming the best of intentions would be wisest.  I don't remember how I responded, or even if I responded.  I do remember thinking, "Doctors are people, too.  I am sure he didn't mean it the way it sounded.  He probably means that he is encouraged by my progress, when a cure is statistically unlikely..."

Just then I heard the distinct voice of my aunt, who herself is a stage IV cancer (and chemotherapy) survivor of over twenty years.  She had been among the first to call soon after my surgery five months earlier.  "You are not a number!" she wisely counseled.

I am not a number.  I'm a person in need of a lot of help to get healthy.

Treatments 9 and 10

Treatment nine was followed by a lot of pain.  I've blocked most of that day out.  (Blocking things out is my Super Power.)  I remember that I left my bed in the dark of night, retreating to the recliner in the living room, where I continued to suffer stabbing pains.  My coping skills were depleted.  I could only sit there in the dark and pray, with tears streaming. 

I believe in redemptive suffering, and so I offered the pain to Jesus through Mary, trusting that she would present my anguish to her Son in a more useful way than I was able to--an exercise that St. Louis de Montfort, St. John Paul II, and many other saints practiced and recommended in their lifetimes.  For as long as I could, I offered prayers for others, then finally I begged God for relief. 

I slept.

If chemo was going to be like this from now on, I was ready to call it quits.  "Nine treatments might be enough," I thought.  I had read that some studies showed that eight rounds of FOLFOX were shown to be as effective as the twelve I was supposed to receive.  Some patients stopped at only six!

Thankfully, the day went infinitely better than the night had, and my resolve to finish the series of treatments returned.

Blood work at this time showed that my poor, over-worked liver needed a break.  During the "recovery" week, I received three neupogen injections to boost my white blood cell count, but these had no benefit to my liver.  That Thursday, my oncologist deemed my liver "too toxic" to proceed with treatment ten as scheduled for the following Monday.  Instead, she proposed to split the treatment over two days.  Fluorouracil alone would be given on Monday.  Oxaliplatin would follow on Tuesday, but only if newer blood labs showed some liver recovery.

On Monday I arrived for FOLFOX minus oxaliplatin.  That night, my doctor phoned to report that the liver enzymes were "not trending upward", which meant that my liver was holding on.  I was instructed to show up at the clinic again the following morning for Part 2 of the infusion.

Tuesday came and I arrived to find the treatment room filled almost to capacity.  My usual spot, which had a view of the "cocktail bar" was available (by this time I was avoiding the windows, because my eyes were so sensitive to light) and so there I sat.  After an hour, all of the patients were plugged in to their chemo meds.  Most were napping.  Patrick and I immersed ourselves online--him doing work; me surfing with no real purpose.

Suddenly, Patrick said, "I think that lady needs help!"  I turned to my left to see a woman about my age in obvious distress a couple of chairs down from mine.  Her eyes were wild with panic; her body stiff.  She didn't make a sound.  Nurses snapped into action.  The doctor was instantly at her side.  All circled the recliner.  The oncologist issued orders with calm authority and they were quietly, but urgently carried out.

Not wanting to stare at a person in such a vulnerable state, I scanned the room instead.  Some patients held magazines in front of their faces, not to read, but to shield their eyes.  Others stared at the alarming scene.  Staff members not immediately involved stood frozen at attention, ready for direction.  I bowed my head and prayed.  Few times in my life have I felt so helpless.

In time the woman's stiff body relaxed.  She continued with her treatment while the room breathed a collective sigh of relief.

More than ever, I wanted to run screaming away and never set foot in the treatment room again.  That didn't happen though.  I was so near to the final chemo appointment, and I needed the satisfaction that would come from knowing that I had done my part to stop the disease.  There was no way I was going to quit.  If my liver could stand another round, then I'd be back in two weeks for number eleven.

Treatments 7 and 8: Christmastime

It was the Christmas season, and I had completed treatment numbers seven and eight.  Most other years would've seen the seven of us piling into the mini-van for several days of road-trips to visit friends and family across the state, but not this year. 

Chemo pushed forward, regardless of the holidays.  I was on a two-week cycle, and my oncologist was committed to ensuring that I did not deviate from it unless it was medically indicated.  Since there was no predicting if I'd have any "good days" between treatments, we decided to stay at home.

Christmas fell on a Wednesday that year, and because it was a treatment week for me, I was attached to the chemo pump.  I worshiped at morning Mass regardless, but it was tough to focus.  Surrounded by fellow parishioners, the pump's intermittent chattering sounded louder to my ears, though I'm sure its volume hadn't changed.

With the clinic closed due to Christmas, Patrick accepted the responsibility of removing my harpoon and pump himself.  Weeks earlier, in anticipation of "pump off" day falling on Christmas, my oncologist had suggested I go to the E.R. for detachment.  We didn't like that idea, so Patrick campaigned for the job.  Granting him her permission, the doctor emphasized that it would be, "For just this one time."

Patrick is a keen observer and not the least bit squeamish.  I was sure he would follow the protocol to the letter and that I would escape any harmful consequences.

Sent: Monday, January 13, 2014 2:35 PM

We spent Christmas Day at home, where Patrick repeated our Thanksgiving menu (minus the flames on the sweet potatoes, much to our four-year-old's disappointment) and the kids spent a good long time opening presents...

...near lunchtime the pump's alarm sounded to let us know that all the drugs were delivered and it was time for removal.  I'm happy to say that Patrick did an excellent job of remembering the 247 steps required to remove the pump, and no infection ensued.  Success!  Also, we saved an E.R. bill.  Merry Christmas, indeed.

Here's something I learned:  Not only does the pump have a "Start/Stop" button; it also has an "On/Off" button.  Ha!  No wonder I could never get the thing to stop beeping by pressing "Stop".  However when "On/Off" is pressed, then the thing shuts off.  Brilliant.  What can I say?  I avoid looking at that thing as much as possible.  ...and anyway, two separate buttons is overkill if you ask me.

By now I was starting to really dread "chemo Mondays".  Most Sunday afternoons were spent trying  to beat my husband at cards; spades specifically.  Playing cards until I couldn't keep my eyes open was a great way to avoid thinking about the next day's chemo infusion.

My blood counts were getting worse.  Even after three neupogen injections, my white blood cell count was too low for treatment number eight.  Additional steroids were administered on the morning of treatment, and the count was boosted.  Number eight would proceed on schedule.

By now I knew to expect the creepy, sickening feeling of benadryl going into the port.  The nurse injected it, and three seconds later my vision went blurry and my eyes rolled back.  Remaining alert was not an option.  No wonder chemo patients receive their infusions in recliners!    It was "lights out", but only temporarily.  After a few minutes I was able to read or hold a conversation again.  It was disconcerting though because I knew that benadryl hadn't always had that affect on me.  The drugs weren't different; it was my own body that was changing.  Bouncing back got more and more difficult.

Results from yet another CEA draw offered more hope that chemo was doing its job.  Enduring the final four treatments would be well worth the pain and nausea, if it meant a cure.

Doc drew more blood for another CEA test.  Still low!  Wooooo!!!  She said it is 0.8 now.  Great, great news.

Looking SO forward to being done with chemo!  March 3 is scheduled as the last treatment.  There will be maintenance drugs, and probably other infusions, too, but the regiment I'm on now will be over, and I hope that my hands/fingers will be back to normal soon after, not to mention my brain, and my energy, and...and...everything!  Can't wait!

The above excerpt was written over a year ago.  I was filled with enthusiasm and hope.  Chemo was stealing my health even as it worked to restore it, but I would win.  Cancer would lose.  I just needed for chemo to not kill me before cancer did.  Once I recovered from chemo, life would be back to normal.  Oh, how I loved the thought of that!

Treatment #6

After treatment six, I got some encouraging news.  My oncologist informed me that my blood-tests showed that the level of CEA (carcinoembryonic antigen) in my system was going down.  CEA is produced by colon tumors.  A steadily dropping CEA level was a good sign.

We would get worse news in about a year, but at the time it seemed that a cure was possible for me.  I wrote to friends and family:

Sent:  December 18, 2013 3:35 PM

Greetings, Friends-

I have good news!  My oncologist has been tracking a particular protein in my blood that is associated with cancer.  Last week, she cheerfully reported that the values are dropping significantly.  This protein (CEA) is used as a tumor marker, and the fact that the value is going down is an indication that the cancer probably hasn't spread.  Yay, hooray!!!  It dropped from a high of 19, to its current value, 0.9.  Woo!  Stay low, CEA.  Stay low.
...
Also happened:  Patrick got trained on how to safely remove the harpoon and pump from his dear wife.  The pump will need to be removed late in the morning on Christmas day.  I laughed when the nurse explained to him about containment.  "Remember," she cautioned, "even though we're dumping this directly into your wife's bloodstream, this stuff is poison to you and me."

Um, Hello?  It's poison to me, too.  Just ask my liver.  But!  It's poison to cancer, too.

My head knew that chemo was my best chance at a cure, but I couldn't keep from thinking, "There's got to be a better way."

Treatment #5 and Flying Wildebeest

Treatment number five occurred during Thanksgiving week.  Of utmost importance to oncologists everywhere is that once chemotherapy treatments start, they happen on schedule.  A holiday on Thursday would in no way impact a treatment slated for Monday of that same week, even if said treatment would render the patient completely useless in preparing the Big Holiday Meal to give thanks for all God's blessings.

Even though Patrick was initially in favor of buying a pre-made dinner for Thanksgiving, the kids and I pleaded for him to cook a turkey and make an attempt at providing our traditional celebratory meal.  He agreed, and with the help of our two teen-aged daughters, and his willing sister-in-law, we feasted like kings.

Post-treatment Thursdays--holiday or not--found me mostly in bed for the day.  I do remember wandering out to the kitchen from time to time, hoping to be of some help with the meal prep, but in fact just making everyone nervous.  They ushered me back to my bed.

I began to think of the post-chemo "recovery" time as merely preparation for the upcoming treatment week instead.  Usually during the week following a treatment I was feeling well-enough to get myself to the clinic for pump removal, neupogen shots, I.V. hydration and/or iron infusions.  I visited the clinic two, three, or even four times each "recovery" week.  Sometimes there were appointments with other docs to squeeze in, too.

My oncologist was concerned about the light-sensitivity I was experiencing.  She feared that oxaliplatin might be damaging my optic nerve.  To rule that out, she asked that I make an appointment with an ophthalmologist.

Here's how that went:

Eye Doc:  So.  You're a cancer patient?

Me:  Yep

Eye Doc:  And you're on what?

Me:  oxaliplatin

Eye Doc:  As part of your treatment?

Me, now losing confidence:  Yep

Eye Doc:  Spell that for me.

Me:  o-x-a-l-i-p-l-a-t-i-n

Eye Doc:  Never heard of that.  Let's do a visual field test.

Me:  mmmkay

He left.  Someone else ushered me into another room and took my glasses.  I sat while a blurry person in a lab coat explained how to run the test to a bystander.  This took approximately 37 hours. 

Lab Coat person then gave me an eye patch and instructed me to cover my left eye, then peer into the machine and to stare ONLY at the bright light, there just above the blankness.  Don't even think about letting your eyeball wander around looking at the nothingness inside the box.  Nothingness is Not Important, and you shouldn't Look at it.  We're testing PERIPHERAL vision here.  Control your eyeball, please.

The test began and my job was to STARE ONLY AT THE LIGHT with one eye, while noticing if there might be other lights blinking in various other places, at various brightnesses, inside the giant box of nothingness.  Also, there would be no wiggling!  Each time I noticed a light, I was to push a button on a handy little device they call a "clicker".  It took about three minutes to execute all of the clicks.

Next:  Repeat with The Left Eye, get directed to another room, wait for Eye Doc.

Eye Doc came back and he asked a bunch of questions, then strapped a contraption to his head that includes a billion-watt light bulb.  Did he forget that I was there because I can't stand bright lights???  He came at me with the Death Ray and I was supposed to keep my eyes open while he studied my optic nerve.  In both eyes!  What?!  Each eyelid in turn tried valiantly to protect me by slamming shut, as that terrible beam bore right into my brain.  Eye Doc and his Death Ray prevailed eventually and the inspection was accomplished.

He shut off the light, and removed his head gear, leaving me blind in both eyes.  Not "blind-blind", but all I could see was the imprint on my retina of his big, stupid light.

Then, guess what he said?  He said,  "Everything looks fine.  This can happen with oxaliplatin.  Now get out of my office you whiner, and don't come back, ever."  He didn't use those exact words.  But you know, I could tell what he meant.

He also said, in effect, "Here's a prescription for eye drops that may or may not help.  People expect to get something when they visit a doctor, and so I will give you this prescription because I am a doctor.  Be sure not to use the drops more than twice a day or you will attract flying wildebeest.  Have a nice day."

So, the important part:  optic nerve = O.K.  I did not avail myself of the eye drops.  The prescription remained unfilled.  I figured that I had enough problems without taking a chance on attracting flying wildebeest.

Treatment #4 in Which Oxaliplatin is Reduced

Treatment number four saw the return of oxaliplatin to the chemo mix.  Starting with this session, I would receive 20% less oxaliplatin than the original amount.  My oncologist assured me that 80% was "still a theraputic dose".  I found myself thinking that the only thing worse than being on chemotherapy was not being able to tolerate chemotherapy, and thus being off chemotherapy.

This day's pre-treatment labs indicated that the liver enzymes went from "five times normal" two weeks prior, to "normal" now.  I mentally congratulated my liver for bouncing back, but my liver was no longer speaking to me.

Mention was made of spots on my lungs that appeared on September's CT-scan, which was taken the day before surgery.  My oncologist compared those images to some taken prior to a series of kidney surgeries that happened to me a year earlier.  She asked me several times if I had suffered a violent coughing fit, or any type of lung infection.  I was sure that I hadn't experienced the latter, but the former was at least more likely.  I did try, but I couldn't remember any prior medical issues aside from those caused by the huge, bilateral kidney stones.

While in the treatment room my "next-chair neighbor" pointed out that I must be like her in that the steroid we're all routinely dosed with at the start of a treatment makes us jumpy.  This week, the two most spun-up patients were sitting right next to each other.  Non-stop yammering ensued.  We couldn't help it.  Other patients around the room were under blankets, dozing from their meds.  They couldn't help it either, I am sure.

Here's an excerpt from the email update I sent out during the "recovery week" after chemo #4:

Sent: Mon, Nov 18, 2013 at 9:29 AM

This past week at home I felt weak and more tired than usual.  I had a fever over the weekend, and prayed that it wouldn't reach the danger-zone, so that I could avoid a trip to the E.R.  I was miserable, but did avoid that trip, (Thanks be to God!).  Treatment #4 brought lingering neck pain, mouth sores, and other stuff that I'm choosing to forget.  Suffice to say, it was a crummy week.

Chemotherapy's side-effects were building, just as I had been warned that they would.  If it meant a cure from colon cancer though, I was willing to endure whatever I could.  I prayed a lot, and asked for prayers a lot, too.  After this fourth treatment, I was officially one-third of the way through the infusions.  Keeping that in mind made me optimistic for the future.

Staying connected to friends and family via the blast-o-gram email updates kept me sane.  Having help with child-care and meals allowed me to rest and heal.  Being told "You're amazing," by my husband helped, too even though I couldn't fathom what he possibly meant by the word "amazing". 

I felt like a tired, nauseated, jumble of painful nerve endings for four out of every fourteen days.  The remaining ten days between treatments saw slow improvement of symptoms, just in time for the next chemo smack-down.  Even so, the end of chemo was in sight.  It was a long way off, but I believed I would make it to treatment number twelve and then recover not only from cancer, but also from chemotherapy.

Treatment #3: Liver Ultrasound

Upon awakening from my post-infusion nap after treatment number three, I dutifully made an appointment for a liver ultrasound as my oncologist had recommended.  It would happen three days later, on Halloween morning.

Two days after infusion, a Wednesday, I went to the clinic to get the pump disconnected.  The doc spoke again of liver enzymes, and the promise of another Neupogen shot (or shots) next week to ensure that my blood was in good shape for treatment #4.  Her plan was to reduce the oxaliplatin by 20% for the next treatment to see if my liver would tolerate it better at a lower dose.

That evening I was feeling good enough to attempt a short journey to a nearby church.  Walking to morning Mass had been part of the boys' and my daily routine all summer long.  Usually we spent the time it took to reach our destination discussing Pokemon.  Sometimes we'd talk about Minecraft, but mostly it was Pokemon all the way (and back).  We'd pause to capture tiny toads if we saw any, or to marvel at various bugs along the way.  New construction in the neighborhood almost made us late more than once.  To keep us moving, I'd always promise to stop (and we did) on the way back, when we had more time for observation.  I missed those walks terribly.  Since Patrick was willing to accompany me that evening, we tested whether eight weeks of healing up from surgery would allow the trip.

It was a slow trek, but I made the two-mile round trip without falling over, and without too much pain.  Success!

The next morning I showed up at the hospital for the ultrasound and was "fast-tracked" to radiology.  One of the great things about this test was that virtually no prep was required of me--no drinking vast amounts of water, as for a pregnancy ultrasound, and no barium slurries, like a CT and PET require.  Easy peasy.

Once I was on the exam table, the next forty minutes went like this:
Radiology tech:  Take a breath and hold it.

Me: [taking a breath and holding it for ten to twenty seconds]

Radiology tech H.:  Breathe [moves and pushes the ultrasound probe around my abdomen]  Take a breath and hold it.

Me: [taking a breath and holding it for ten to twenty seconds]

Radiology tech H.:  Breathe.

...and repeat over and over and OVER.

At one point I was asked to turn toward the screen.  The screen was filled with swirls of various shades of gray that made no sense to me, except that I was able to discern that the solid white spot on the screen indicated a kidney stone.  I was only able to make this impressive observation because the tech had typed the word "kidney" and that too, appeared on the screen.  I asked her to add my urologist to the long list of doctors that would eventually receive the radiologist's report.

The tech printed off some of the scans and told me she'd "be right back".  In this case, the phrase, "be right back" meant, "I'll be back in twenty-five minutes."  I remained on the exam table, breathing at my leisure.  When she finally did return, she gave me the O.K. to get dressed and leave. 

Freedom!

That night, I experienced stabbing pains unlike any I had ever had before.  Was it the result of the pushing and probing from the ultrasound?  Could it have been due to the previous day's walk?  Did I develop a hernia?  Something else?  Patrick and kids 3, 4, and 5 went trick-or-treating.  Kid 1 was on candy-doling assignment, while kid 2 took off with a friend for places unknown.  I spent Halloween night camped in the recliner blankly staring at the T.V. screen, trying not to move.

Treatment #3: The Liver Protests

Treatment number three happened on the last Monday of October, 2013.  Patrick and I arrived at the clinic on a bright, sunny morning.  After the routine pre-treatment tests, my liver enzymes were found to be "five times more than normal".  Because of that, the new drug (Avastin) was delayed again.  The doc decided also to omit from today's "recipe" the drug she suspected as the cause of the liver toxicity, oxaliplatin.

FOLFOX is the short-hand way of referencing the chemo regimen I was on.  "FOL" for folinic acid (leucovorin), "F" for fluorouricil (5FU), and "OX" for oxaliplatin.  My time in the infusion chair would be shorter that day, since the oxaliplatin would be skipped.

An order for an ultrasound of the liver was written and presented to me with the instruction, "Please have this done as soon as possible".  I tucked away the order and made a mental note to call the hospital later that day.

Off to the infusion room.  BP was taken, port accessed (no drama!), and meds started to drip.  Once I was settled, my oncologist came by to discuss my liver.  It was an unsatisfying conversation.  Unlike the fields I had worked in (programming and engineering), medicine is not at all cut-and-dried, especially when it comes to cancer treatment.  Human biology plus pharmacology equals...well, we would have to just wait and see.  The hope was that my liver enzymes would stabilize after a two-week break. 

"Maybe oxaliplatin could be added back in next time..." the doctor seemed to be thinking out loud when she suddenly stopped short and called out, "Can someone get a tissue?"  She spied a nickel-sized, hairy spider (!!!) on my sweater, just above where the port and its connected infusion hardware sat.

After a second or two of no response to her request, the doctor whacked the beast away with her prescription pad (Yikes! Don't forget the harpoon there...).  It was a jumping spider, and it disappeared to who-knows-where.  We briefly tried to find it, but it was well-hidden.  Just then, the requested tissues showed up.  We resumed our liver conversation and as that was wrapping up, the little monster crawled back onto my arm.  GAH!  "There it is!" declared the Good Doctor as she scooped it up, tossed it to the floor, and crushed it under her venerable shoe in one fell swoop.

I squeaked, "Spiders are good luck, right?"  

"Yes, I think that's right," she laughed.  The lady in the next chair over, who witnessed the whole scene, congratulated me for not trying to dart out of the chair.  I then remembered last week's iron infusion, and was glad that I had stayed put this time.

Hours later, I was disconnected from the infusion pump, and attached to the portable one.  We were sent on our way.

Oxaliplatin's absence was immediately obvious.  There was no sensitivity to cold, no shards-of-glass feelings in my fingers, and no numbness!  I even imagined the possibility of ice cream, sweet bliss.

Once home, I collapsed onto my bed.  As I lay there, drifting off to sleep, I had a conversation with my liver:

Me:  Liver?  Haven't I been good to you?

My Liver:  Yeah.  I guess.

Me:  Barely any alcohol, ever.

My Liver:  mmm-Hmmm

Me:  No smoking.  No illicit drugs.  Hardly any meds until now...

My Liver:  Yep

Me:  I guess chemo is no picnic...sorry about that.

My Liver:  You don't know that half of it, lady.

Me:  Good luck, Liver. [Yawnnn]  I hope you bounce back.

My Liver:  Stop talking to me, you freak.

Me:  zzzzz

Neupogen Spells More Pain

Treatment for cancer was taking up more time than I ever expected.  I was in the middle of my second "recovery week", and had medical appointments on four of the five weekdays.  On Thursday, I went to the clinic for a Neupogen injection.

My oncologist asked how I was feeling, and I said, "Great!"  It was true.  I hadn't felt that good since pre-diagnosis.  Yay, iron!  The doc was pleased with my comment, and informed me that an additional dose of Neupogen would be given the following day, which was Friday.  She wanted to boost the white blood cell count with another injection of the marrow-stimulating drug before the next chemo treatment.  I thought, "No problemo."

Silly, silly me.

Friday morning, I arrived at a mostly-empty clinic for the shot.  I was in and out in 20 minutes.  The rest of the day went well.  I was able to do some home-schooling with the boys, and the iron seemed to be still sticking around.  (Yay, iron!  Again.)  But during the night, the Neupogen really kicked in.  I woke up at 2:00 a.m. feeling like my bones were being crushed.  I rolled out of bed and stumbled to the medicine cabinet for some Extra Strength Tylenol.  It was three hours before I got back to sleep, and I spent most of that time writhing around, struggling to find some way to ease the pain, but there was no escaping it no matter what I tried.

Up till then it was The Worst pain I have ever felt.  It was worse than birthing an almost-twelve pound baby, drug-free (kid #3); worse than the labor that I thought would never end (kid #5); worse even than last summer's 30 mm kidney stone, its smaller twin, and all the related surgeries and procedures associated with their removal.  It was that bad.  It was worse!  Because of that experience however, I am now able to attest that prayerful meditation can help to ease pain.  I spent a lot of time in those wee hours focusing on Christ's Passion and Death, and as a result, dwelling less on my pain.  I acquired a new understanding of suffering that night.

My poor blood was taking such a beating, and the rest of me too.  I had no idea, before living through it myself, that treatment for colon cancer involved so much pain.  Nausea and fatigue I expected, but the rest of it was a complete--and unwelcome--surprise.

I just hope that someday (a long, long time from now!) I will get to meet the souls who were flying out of purgatory that night.

A Pain That Nauseates

Six weeks out from abdominal surgery, I was still in some pain.  My oncologist was reluctant to start Avastin until I had been examined by the surgeon.  The day after my iron infusion I saw the surgeon in his office.  I expected it to be a quick trip--he'd find all the sore spots, and send me on my way telling me, "It's just nerve damage, you're good to start Avastin".  Instead, this happened:

Surgeon:  Let's see that incision.  Hey.  Wow.  You have some stitches here, still.  These must be bothering you.

Me:  Uhhh...no, not really

Surgeon:  Let's just do this [Grabs tweezers.  Yank!  He pulled a stitch.]

Me (unspoken):  These need to come out WHYYYY?!!

Then, THEN!  He held the thing up to the light so I could see it.  Did I want to see that?  NO!  Of course not!  I am a person who is unable even to pull my children's baby teeth.  In theory, I am interested in All Things Medical, but in practice?   No, no, no.  And besides:  OUCH.  But he didn't stop there.  He yanked out another one.

Me:  YOWIE!

Surgeon:  [Holds up...a length of...whatever it is...so I could see.]

Me, weakly:  Yeah, I don't need to see that.

Surgeon:  Oh.  Hey look at that, Celine.  You've got a knot right...there!  [Scrounge, pull, probe, yank...  He turns around to retrieve some other horrific instrument.  Dig, pull, yannnnk] AHAAAA...there we go!

Me, getting sicker:  OWWWWW...You do know that I'm awake, right?  And that I can feel that?!

Him:  All done.  You did great.

Me: [sweating profusely] I am about to vomit all over your shiny floor.  And then pass out...and probably vomit some more.  That is not great, Doc...not great at all.

I can't remember how I got out of there.  I do remember sitting in my car, still parked, and trying not to throw up.  The sense of "something awful just happened" lingered on the fringes of my frazzled mind.  I was a mess.  I called Patrick at work from my cell phone.  Patrick, wonderful husband that he is, comforted me over the phone.

One nap later and the surgeon was forgiven, but I doubt I'll ever forget the way those stitches came out.

Iron Infusion Confusion

Monday, October 21, 2013 was a non-treatment day for me.  I did need to go to the clinic for an iron infusion, however.  I was not at all enthusiastic about having the port accessed so soon after the previous Monday's ordeal, when three harpoons were stabbed into me.  I prepped the area around the port with a numbing agent, then obediently drove to the clinic.  Mentally though, I dragged my feet.

Vitals were taken, weight measured, B12 and neupogen injections given, and then it was into an infusion recliner for me.  This time, thank goodness, accessing the port went flawlessly!  Whew!  Harpoon "in", saline flush, and even a blood draw via the port.  Done, done, done. 

During the prep time the oncologist greeted me and asked about pain at the surgical site.  "Still there,"  I reported.   She wanted to assess.  This would mean moving to an exam room, postponing the iron infusion for a few minutes.  The nurse left the harpoon and associated access tubing in place, using paper tape to attach it to my shoulder temporarily.  Upon my return to the treatment room, she would be able to hook me up to the infusion pump in no time.  The paraphernalia taped to my sweater reminded me of a bizarre corsage.

Me:  I feel pretty.

Nurse:  Everyone's going to want one of their own.

We crossed the large treatment room, then made our way down the hall, past the waiting room and finally to an exam room where the doc found all of my sore spots (of course she did!).   Then she said she'd like my surgeon to have a try, too.  She phoned him, and he agreed that I should be seen in his office.  She instructed me to make an appointment with him when I got home.

Back to the treatment room for iron--glorious, energy-enhancing iron.  The oncologist followed me as I returned to the recliner, and spoke of vitamins, folic acid, and heartburn meds as I got settled into the chair.  She stood in front of me writing prescriptions, which someone would phone in to the pharmacy (convenient!), then left the room.  It was as she walked away that I realized that I had brought no reading material with me.  No Kindle, no books, no laptop, and no companion either!

I needed something to do.  I was too shy to suggest turning on the T.V. to the other reclining patients.  I stood up, hoping to find some decent reading material on the shelf across the room since I knew that the infusion, once it started, would take an hour.

"Once it started" is the phrase to note.  I thought that the infusion hadn't started yet.  I was wrong!

Two seconds after I stood up and began walking across the treatment room a nurse came flying out of the cocktail bar, with arms outstretched and frantically waving her hands in front of her.

Nurse:  Whoa!  Whoa!  Whooooooaaaa!!!
Me (unspoken):  Who's she talking to?

Just then I was jerked back.  Oh nooooo!  The tube leading from my port was pulled tight and I felt a nauseating tug from the hardware in my chest.  I stopped dead in my tracks as the nurse leapt behind the row of chairs like a super-hero.  In a blink she unplugged the infusion pump from the wall, freeing me for my walk across the room.

Me, panicked:  Uh-oh!
Nurse, cheerily:  Don't forget your skinny boyfriend.
Me:  OHHH my goodness.  I didn't know I was connected.

I was connected like so: 
me with embedded port
harpoon stuck into port
catheter connected to harpoon
bag of iron connected to catheter
I.V. pole connected to bag of iron
I.V. pump connected to the I.V. pole
electrical outlet (the WALL) connected to the I.V. pump (cord). 

I had tried darting away, oblivious that I was tethered to the wall!  Unbeknownst to me, someone had connected the harpoon in my chest to the waiting bag of I.V. fluid while I was talking to the doctor.  How could I have not notice that?!

Nurse:  No harm done.  We had you taped up good.
Me:  Sorry for the heart attack.
Me:  If I close my eyes, I will be invisible!  It works for my six-year-old...he says.
Also Me:   I wonder if I would have responded better if she had yelled, "Stop!"

Mortified, I continued to my destination, this time consciously aware that I needed to bring the rolling pump/pole contraption along with me as though nothing had happened, certain that other patients' eyes were following my path.  I grabbed a book.  I returned to my spot and tried to disappear.  I hid behind "Against All Enemies" by Tom Clancy while piecing back together the shreds of my dignity.

When I got home, I konked out on my bed and woke up to find that the Iron Fairy had delivered my brain.  Not only that, but I could now stand up without a mini-blackout. 

Iron, I love you.  Don't ever leave me again!