Sent: October 15, 2013 8:19 AM
Subject: Quick Update: Tx#2
Greetings!
Treatment #2 was yesterday, and rather gory but you'll have to wait for details, b/c my hands are shaky today. Hopefully that will lessen over the course of the week.
Taking anti-nausea meds BEFORE I need them this time. It goes against my nature, so it's hard to remember to do it. I have a schedule written down, so that should help.
Planning a lot of rest today. Hope it works out that way ;)
Will update more later in the week.
Thank you for your prayers!
Celine
Five days after sending that message, I tried to show my friends and family what it was like for me in the clinic during the next chemo treatment:
Greetings!The treatment room was full on Monday. It is a large room, maybe 20-ft x 16-ft, with square stone tile on the floor, and windows on the two exterior walls. It is home to eight large, overstuffed leather recliners arranged around three sides of the room. Small folding tables placed between each chair provide a convenient place for nurses to set bandages, needles, meds, and all manner of equipment. Beside each chair is an I.V. pole with an attached infusion pump. The room opens onto a deep lab area where patients can watch as the pharmacy techs and the nurses go about their work.
When a patient brings a companion to the clinic, as I always did, the companion may use the recliner next to the patient, when one is available. Chemo infusions last several hours, so having a comfortable chair makes the long sessions more bearable. On Monday, there was only one empty recliner. I was patient number eight that morning. Most of the companions present, Patrick included, were relegated to low, backless stools placed behind the row of recliners and tables, next to the wall. Another companion, a young lady in her late-teens or early twenties, shared her mother's recliner, snuggling tight against her mother's side.
I sat in the one remaining available seat, which was halfway around the room, directly opposite the "cocktail bar" where the pharmacy tech stood bedecked in safety goggles, elbow-length purple nitrile gloves, and a disposable blue tie-back protective gown, eagerly awaiting the first chemo order to mix. He'd be busy that day, and he looked like he was up to the task.
One of the many things I never knew until I became a cancer patient myself is that "chemotherapy" is a generic term. The mix I would receive for my treatment would almost certainly be different than the one the patient in the next chair over received. Some meds were dosed based on the patient's surface area (I do wonder how they came up with that idea). Some were based on weight.
Not only were dosages different, but the meds used were different, depending on the type of cancer being treated. Not every chemo patient loses their hair, for example, because not every chemo patient receives, say irinotecan in their chemo "cocktail". To complicate matters even further, sometimes dosages are adjusted from treatment-to-treatment due to unacceptable levels of toxicity.
I didn't know it at the time this blast-o-gram was written, but my own "recipe" would be adjusted starting at treatment number three, due to my liver no longer tolerating (as evidenced by lab results) the amount of oxaliplatin in my mix.
Several nurses went about their routines, each assigned to multiple patients. They drew blood, hung meds, and offered blankets. The oncologist wove in and out among the staff, patients, and companions, ever-vigilant, checking charts and meds, answering questions, giving instructions, and ensuring that the day got off to a smooth start.
My nurse wheeled a many-drawered supply cart toward me noisily over the bumpy tile-and-grout floor. "You ready?" she smiled. I assured her that I was. But. I lied. I wasn't ready for what was ahead. She grabbed gloves, and selected a harpoon from one of the drawers to stab me with. She peeled away the sterile wrapping, then spied the spot where the medi-port waited.
The nurse carefully inspected the site, swabbed an antiseptic-soaked wipe across it, then jabbed the gigantic needle through my skin and into the port. Next, she used a saline-filled syringe to flush the port, and then tried to draw blood. No blood. "Hmmmm..." she said, "let's try that again." "Again?!" I thought. Thwack! out popped the harpoon from my chest, and she reached for another one from the supply cart. "Sorry," she whispered. She sprayed the spot with a smelly, non-effective numbing agent. She asked me to turn my head as far to the right as I could, and then to "take a deep breath". Doing this made me an unknowing participant in my own torture! As my lungs expanded, the harpoon dug in, pushing painfully against the back of the port. I screamed silently and clutched my thigh. Ow! Ow! Ow! Again the syringe. Again it pulled nothing.
"Oh no...," I thought. I couldn't look. Of course I couldn't look! My eyes squeezed shut.
Thwack! The nurse pulled out the second harpoon. Now my mind raced, "She's not going to do it AGAIN?!?" Yes. She was going to do it again. "Third time's the charm?" I croaked, hoping that if this attempt didn't work, I would pass out. I imagined myself sliding from the recliner to the cold, hard floor, unconscious. "She could try as many harpoons as she wanted then," I thought.
She unwrapped the third harpoon, and I was suddenly keenly aware of the other people in the room. They were all staring at us even though I swear the screaming was only in my head. Even the pharmacy guy was standing still, watching. Was three attempts unusual? I wouldn't know. "So, so sorry," the nurse whispered as she sprayed the aerosol again, then confidently came at me with the third harpoon. This time, it felt like she was trying to attach me to the chair with a nail gun. I clenched my fists, and my jaws, and guess what? Still no blood in the syringe.
Me: What am I, a zombie? Why is there no blood?
Nurse: Sometimes they're just stubborn. I'm sure you're not a zombie.
Me: Three tries is too many tries. Got any vodka? (Ha! No, I didn't mention booze...I wasn't nearly coherent enough to ask for anything useful at that point.)
The nurse was able to push fluids through the port (not that I was looking!), and so hung the meds as usual. She then drew blood the conventional way, using a needle in my arm. ("See? Not a zombie," she smiled, holding up the vial of blood.) She walked across the room and into the lab-slash-cocktail bar, while I attempted some deep "cleansing" breaths and tried hard to forget what just transpired.
That experience gave me nightmares, as in: more than one actual nightmare.
Note: If you are facing an infusion for the first time, don't worry! It almost never happens this way.
Part 2 to follow.
Thursday, April 30, 2015
Wednesday, April 29, 2015
Treatment 1: The Aftermath
I didn't keep a journal per se as treatment progressed, but I did send updates via blast-o-gram during each "rest week" from chemo. I wanted to paint a picture of what cancer treatment is like so that I could, in a sense, bring my support group along for the ride. I needed (and still do need) their prayer support and their encouragement. Writing helped me to suffer less and laugh more. The following day-by-day account was sent one week after my first treatment:
Sent: Monday, October 7, 2013 10:24 PM
Subject: Week #01 Post Chemo
Tuesday: Still yuck. Dizzy, nauseated, hands trembling, mind racing...and! Avoiding cold objects (or wishing I had) as though they will stun me. Which they do--repeatedly--because I have ZERO short-term memory. It was ridiculous the number of times I reached for something that I knew was cold. One split-second after grasping said object, it went crashing to wherever gravity sent it. I'd shriek "AAAIIEEEE! Why did I DO that?!", followed by maniacal hand movements (imagine drying your hands without a towel by repeatedly flicking your wrists) to stop the stinging sensation. It was very painful! Mostly, I was in bed staying away from the cold objects. It was not a fun day.
Wednesday: The Worst Night Ever. The day started out OK. My plan was to bring the three boys with me to the clinic, since this would be a short visit to remove the harpoon from my medi-port, thus freeing me from the portable chemo pump. The boys packed themselves into the car, and I backed the minivan out of the garage. But I got confused. At the bottom of the driveway (we live on a hill), I couldn't figure out why my hand automatically reached for the visor. Then I realized, "Oh, the garage door opener is usually clipped here." My goal was then to ask my 11 year old son to, "Please run up the driveway and close the garage with the keypad". Those words would not materialize, however. I could picture an image of the opener as it lay on my kitchen counter (splayed open and waiting for a new battery), but no words were produced. Eventually I said something like, "Use the thing to [waving a finger at the garage] go thing". Thankfully, he knew what I meant. The kid must be psychic.
Driving was going great, I thought, until the pump started beeping! Really? Now? I pullled over to the curb and stopped the car. After unzipping the not-lovely black polyester carrying case, and finding the "Stop" button on the face of the pump, I push the button. Success! ...for about five minutes. The pump kept beeping and beeping, warning for most of the drive that the reservoir was almost empty. I kept pushing "Stop" and it kept not stopping. I even held the button down for a count of twenty, thinking that this was the secret, but no. More beeping. I ignored it.
[Arrive at clinic.] We were the only visitors. Relief. Last time, the waiting room was full of not-feeling-good people. I did get permission beforehand about whether or not I could or should bring the boys on short visits like this one, but it was still comforting to know that their antics would only be bothering the staff (sorry, staff!), and not any patients. The little ones busied themselves with plastic linking toys; the bigger one drew pictures of video game characters. I was ushered to the back.
Still wobbly. The nurse tore the sticker-dressing off of the harpoon in my chest, and then yanked out the harpoon. OK, it wasn't quite that horrific, but that's what it seemed like. I didn't watch. Too squeamish!
The oncologist wanted details, details of the past two days. I gave her details. She offered no explanation for my thumb's early, though temporary "demise" of the night before. More things happened, but--heh. They're gone. Memory. It's got some recovering to do, still.
We made it home O.K., but around dinner time things got ugly. I think that it was due to the bright sunlight bouncing around the surfaces in my house, and probably coaxed along by gnawing hunger (someone explain to me how a person can be both nauseous and hungry, by the way?) that triggered the most grisly, terrifying migraine aura I've ever had. Please, God, don't let this happen after every treatment! I was literally half-blind for the better part of an hour, and could do nothing but curl up in my bed praying that the headache I knew was coming, wouldn't make me vomit. It didn't! Advil took the edge off, and after a while I was able to sleep. Peace.
Thursday: Two words sum it up: intestinal difficulties. Not dwelling on it. Another bad day.
Friday: New strangeness! Inflamed gums on the lower left. But wait. Can't explain this one. Drank more fluids. Stayed in the recliner most of the day.
Saturday: Symptoms: Gums huuuurt, swollen lymph nodes under jaw, and pain shooting into my ear. Chills happened later in the afternoon. Fever reached 99.5. Fluids. Rest. Prayer. Fever broke an hour (?) later.
Chills are not good at all. Chills mean "fever" and I've been warned about a dozen times that "any fever of 100.5 degrees or more means you call me (hematologist) immediately no matter the time or the day, and I will send you to the E.R." Scary. He even wants me to record my temperature daily...I guess in case a fever sneaks up on me? I missed the opportunity to say, "Ha! I'm way ahead of you. I have YEARS of temperature data." (It's a Catholic thing.)
Sunday: Mass! Mass at my own parish. Welcome Home! It was the best. Normal things happened! Also the best. Played spades (card game) with the family all afternoon and when the weather broke, went for a walk with my husband, sister, and youngest kid. Awesome! Got rained on during the walk back, but it was fabulous to be outside, walking again. Normal! Normal things happened. I miss normal. I love normal.
Monday: I bounced out of bed. Energy, huzzah! At the clinic that day I had blood drawn (via needle in the arm; not harpoon in the chest--they can do that--ack!) and various other tests, measurements, etc. etc. Reviewed with the doc all the weird things (and much more) related here and took notes on New Things To Do after the next treatment. It was a long appointment. My eyes are still very sensitive to light, but there were gloriously heavy, gray clouds covering the sun on the drive home from the clinic today. Almost not even wobbly at all. Iron is low.
Treatment Number Two in one week. Doc said to expect the fatigue and neuropathy* to get worse with each treatment, and the nausea to remain about the same (to be controlled w/meds). One treatment down! I know better what to expect for next time. Very, very thankful for a week "off" between treatments. It's difficult to wrap my head around the fact that chemo is the "good guy" when it makes me feel so sick.
LOTS to be thankful for, including people who put up with these crazy-long updates :)
Thank you for praying!
Celine
Sent: Monday, October 7, 2013 10:24 PM
Subject: Week #01 Post Chemo
Tuesday: Still yuck. Dizzy, nauseated, hands trembling, mind racing...and! Avoiding cold objects (or wishing I had) as though they will stun me. Which they do--repeatedly--because I have ZERO short-term memory. It was ridiculous the number of times I reached for something that I knew was cold. One split-second after grasping said object, it went crashing to wherever gravity sent it. I'd shriek "AAAIIEEEE! Why did I DO that?!", followed by maniacal hand movements (imagine drying your hands without a towel by repeatedly flicking your wrists) to stop the stinging sensation. It was very painful! Mostly, I was in bed staying away from the cold objects. It was not a fun day.
Wednesday: The Worst Night Ever. The day started out OK. My plan was to bring the three boys with me to the clinic, since this would be a short visit to remove the harpoon from my medi-port, thus freeing me from the portable chemo pump. The boys packed themselves into the car, and I backed the minivan out of the garage. But I got confused. At the bottom of the driveway (we live on a hill), I couldn't figure out why my hand automatically reached for the visor. Then I realized, "Oh, the garage door opener is usually clipped here." My goal was then to ask my 11 year old son to, "Please run up the driveway and close the garage with the keypad". Those words would not materialize, however. I could picture an image of the opener as it lay on my kitchen counter (splayed open and waiting for a new battery), but no words were produced. Eventually I said something like, "Use the thing to [waving a finger at the garage] go thing". Thankfully, he knew what I meant. The kid must be psychic.
Driving was going great, I thought, until the pump started beeping! Really? Now? I pullled over to the curb and stopped the car. After unzipping the not-lovely black polyester carrying case, and finding the "Stop" button on the face of the pump, I push the button. Success! ...for about five minutes. The pump kept beeping and beeping, warning for most of the drive that the reservoir was almost empty. I kept pushing "Stop" and it kept not stopping. I even held the button down for a count of twenty, thinking that this was the secret, but no. More beeping. I ignored it.
[Arrive at clinic.] We were the only visitors. Relief. Last time, the waiting room was full of not-feeling-good people. I did get permission beforehand about whether or not I could or should bring the boys on short visits like this one, but it was still comforting to know that their antics would only be bothering the staff (sorry, staff!), and not any patients. The little ones busied themselves with plastic linking toys; the bigger one drew pictures of video game characters. I was ushered to the back.
Still wobbly. The nurse tore the sticker-dressing off of the harpoon in my chest, and then yanked out the harpoon. OK, it wasn't quite that horrific, but that's what it seemed like. I didn't watch. Too squeamish!
The oncologist wanted details, details of the past two days. I gave her details. She offered no explanation for my thumb's early, though temporary "demise" of the night before. More things happened, but--heh. They're gone. Memory. It's got some recovering to do, still.
We made it home O.K., but around dinner time things got ugly. I think that it was due to the bright sunlight bouncing around the surfaces in my house, and probably coaxed along by gnawing hunger (someone explain to me how a person can be both nauseous and hungry, by the way?) that triggered the most grisly, terrifying migraine aura I've ever had. Please, God, don't let this happen after every treatment! I was literally half-blind for the better part of an hour, and could do nothing but curl up in my bed praying that the headache I knew was coming, wouldn't make me vomit. It didn't! Advil took the edge off, and after a while I was able to sleep. Peace.
Thursday: Two words sum it up: intestinal difficulties. Not dwelling on it. Another bad day.
Friday: New strangeness! Inflamed gums on the lower left. But wait. Can't explain this one. Drank more fluids. Stayed in the recliner most of the day.
Saturday: Symptoms: Gums huuuurt, swollen lymph nodes under jaw, and pain shooting into my ear. Chills happened later in the afternoon. Fever reached 99.5. Fluids. Rest. Prayer. Fever broke an hour (?) later.
Chills are not good at all. Chills mean "fever" and I've been warned about a dozen times that "any fever of 100.5 degrees or more means you call me (hematologist) immediately no matter the time or the day, and I will send you to the E.R." Scary. He even wants me to record my temperature daily...I guess in case a fever sneaks up on me? I missed the opportunity to say, "Ha! I'm way ahead of you. I have YEARS of temperature data." (It's a Catholic thing.)
Sunday: Mass! Mass at my own parish. Welcome Home! It was the best. Normal things happened! Also the best. Played spades (card game) with the family all afternoon and when the weather broke, went for a walk with my husband, sister, and youngest kid. Awesome! Got rained on during the walk back, but it was fabulous to be outside, walking again. Normal! Normal things happened. I miss normal. I love normal.
Monday: I bounced out of bed. Energy, huzzah! At the clinic that day I had blood drawn (via needle in the arm; not harpoon in the chest--they can do that--ack!) and various other tests, measurements, etc. etc. Reviewed with the doc all the weird things (and much more) related here and took notes on New Things To Do after the next treatment. It was a long appointment. My eyes are still very sensitive to light, but there were gloriously heavy, gray clouds covering the sun on the drive home from the clinic today. Almost not even wobbly at all. Iron is low.
Treatment Number Two in one week. Doc said to expect the fatigue and neuropathy* to get worse with each treatment, and the nausea to remain about the same (to be controlled w/meds). One treatment down! I know better what to expect for next time. Very, very thankful for a week "off" between treatments. It's difficult to wrap my head around the fact that chemo is the "good guy" when it makes me feel so sick.
LOTS to be thankful for, including people who put up with these crazy-long updates :)
Thank you for praying!
Celine
*Neuropathy A condition affecting the nerves supplying the arms and legs. Typically, the feet and hands are involved first. If sensory nerves are involved, numbness, tingling, and pain are prominent, and if motor nerves are involved, the patient experiences weakness.
At this point, neuropathy was only affecting my hands, and only when they were exposed to cold. For the first several treatments, they would return to normal a day or two past treatment-day.
At this point, neuropathy was only affecting my hands, and only when they were exposed to cold. For the first several treatments, they would return to normal a day or two past treatment-day.
Chemo wiped me out each treatment-week both mentally and physically. My schedule--my entire life--was consumed with chemo treatments: getting to them, enduring them, and mitigating their consequences. I slogged ahead to number twelve, which was still miles away.
Tuesday, April 28, 2015
September 30, 2013: Chemo is Weird
Local friends brought dinner regularly during "chemo weeks", and those dinners were a kind of life-line for us. From a practical standpoint, having meals provided meant no menu-planning, grocery trips, or food-prep for us, and minimal cleanup--all of which was tremendously helpful. From a spiritual view though, the meals were concrete evidence that we were not alone in our struggle. If you've ever wondered, "Can a meatloaf really do all that?" I'm here to tell you that it can.
My treatment schedule was always: Week A, chemo for 3 days; Week B, recover. This 2-week pattern would repeat for 12 cycles lasting six months total. Side-effects changed and worsened during the course of treatment, but as bad as it sometimes got, there was always at least one strange event that I wanted to share with friends. This time the strange event was dinner.
Sent: Wednesday, October 2, 2013 3:22 PM
Monday's dinner was delivered by a dear friend, J. She is an awesome, awesome cook and unknowingly gave my whole family a huge surprise that we will remember for a long time.
Food wasn't seeming like a great idea, but...I was hungry. So I tried the main dish. OK. I'm eating a little bit! This is going to be fine. The salad looked most wonderfully appealing to me. It had red peppers, strawberries, cucumbers, candied walnuts, and lettuce...and something else. I munched away at the salad, thankful for all the fresh, healthy ingredients. I was only half-aware that one of the "red peppers" in my mouth was softer than I expected. "No matter. It is delicious," is what my brain told me. And then it hit me: I just ate a tomato!
O-M-G! I don't eat tomatoes. I don't even buy tomatoes. My children barely know what a tomato is. My disgust for raw tomatoes is so deep, and so wide that I refer to the tomato as a "tool of the devil" as a matter of course. No reward on earth would entice me to eat a raw tomato. None. Ever.
So when I announced to my five children and loving husband, "Hey. I think I just ate a tomato," there may have been forks dropped onto plates, and jaws hanging open in disbelief. Someone asked, "Who are you, and what have you done with my mother?" My husband whispered, "I don't believe it," and stared blankly in my general direction. I stabbed another piece, in full knowledge this time, with all six family members watching. It was yummy. What in the world? The aliens have invaded my taste-buds. I'm considering haggis next. (Kidding! Do not send haggis.)
. . .
Other weird things are happening... One freakish thing that happened was that my right thumb apparently decided it was DONE being an active member of the hand, and so stopped working. No warning, it just up and "died" during the simplest task. I was merely handing a piece of bread to a kid at the dinner table. Was that too much to ask? The thumb was barely involved! Thankfully, it reconsidered after a minute and began functioning as normal. It does make me wonder what OTHER body parts might decide to do just that very thing in the future. We'll find out, eh?
How any given patient will respond to chemotherapy is unpredictable from one cycle to the next. My thumb "dying" that night was probably the work of Oxaliplatin, which is used for colon and rectal cancers. It is an impish drug; one that would pester me in many ways through the course of treatment and beyond.
* * *
In those early days of revelation, my urologist checked in to advise me on another health matter. I blasted about that, too:
In Other News
My urologist gave me a call. He was all about not forgetting to have lithotripsy on the pesky kidney stone when chemo is over.
Him: We can get it done whenever it's a good time for you.
Me: But really. When you think about it, when IS a good time for lithotripsy?
Him: Oh, I think Monday, Tuesday...
Me: Yeah, yeah. You'll have to catch me first.
...
Now we're settling in for a long six months. Looking forward to a peaceful October of adjustment and getting well. Enjoying "normal" whenever I find it! Thankful as always, for your love and prayers.
Celine
It's now been eighteen months since I broadcast the message above. I'm not too worried about the kidney stone yet.
My treatment schedule was always: Week A, chemo for 3 days; Week B, recover. This 2-week pattern would repeat for 12 cycles lasting six months total. Side-effects changed and worsened during the course of treatment, but as bad as it sometimes got, there was always at least one strange event that I wanted to share with friends. This time the strange event was dinner.
Sent: Wednesday, October 2, 2013 3:22 PM
Monday's dinner was delivered by a dear friend, J. She is an awesome, awesome cook and unknowingly gave my whole family a huge surprise that we will remember for a long time.
Food wasn't seeming like a great idea, but...I was hungry. So I tried the main dish. OK. I'm eating a little bit! This is going to be fine. The salad looked most wonderfully appealing to me. It had red peppers, strawberries, cucumbers, candied walnuts, and lettuce...and something else. I munched away at the salad, thankful for all the fresh, healthy ingredients. I was only half-aware that one of the "red peppers" in my mouth was softer than I expected. "No matter. It is delicious," is what my brain told me. And then it hit me: I just ate a tomato!
O-M-G! I don't eat tomatoes. I don't even buy tomatoes. My children barely know what a tomato is. My disgust for raw tomatoes is so deep, and so wide that I refer to the tomato as a "tool of the devil" as a matter of course. No reward on earth would entice me to eat a raw tomato. None. Ever.
So when I announced to my five children and loving husband, "Hey. I think I just ate a tomato," there may have been forks dropped onto plates, and jaws hanging open in disbelief. Someone asked, "Who are you, and what have you done with my mother?" My husband whispered, "I don't believe it," and stared blankly in my general direction. I stabbed another piece, in full knowledge this time, with all six family members watching. It was yummy. What in the world? The aliens have invaded my taste-buds. I'm considering haggis next. (Kidding! Do not send haggis.)
. . .
Other weird things are happening... One freakish thing that happened was that my right thumb apparently decided it was DONE being an active member of the hand, and so stopped working. No warning, it just up and "died" during the simplest task. I was merely handing a piece of bread to a kid at the dinner table. Was that too much to ask? The thumb was barely involved! Thankfully, it reconsidered after a minute and began functioning as normal. It does make me wonder what OTHER body parts might decide to do just that very thing in the future. We'll find out, eh?
How any given patient will respond to chemotherapy is unpredictable from one cycle to the next. My thumb "dying" that night was probably the work of Oxaliplatin, which is used for colon and rectal cancers. It is an impish drug; one that would pester me in many ways through the course of treatment and beyond.
* * *
In those early days of revelation, my urologist checked in to advise me on another health matter. I blasted about that, too:
In Other News
My urologist gave me a call. He was all about not forgetting to have lithotripsy on the pesky kidney stone when chemo is over.
Him: We can get it done whenever it's a good time for you.
Me: But really. When you think about it, when IS a good time for lithotripsy?
Him: Oh, I think Monday, Tuesday...
Me: Yeah, yeah. You'll have to catch me first.
...
Now we're settling in for a long six months. Looking forward to a peaceful October of adjustment and getting well. Enjoying "normal" whenever I find it! Thankful as always, for your love and prayers.
Celine
It's now been eighteen months since I broadcast the message above. I'm not too worried about the kidney stone yet.
Monday, April 27, 2015
September 30, 2013: First Chemo Treatment
Just before 9:00 a.m. on the last Monday of September, Patrick and I showed up at the oncology clinic for my first chemo infusion. Shortly after checking in, I was escorted to the treatment area in the back. Vital signs were measured, and weight recorded.
Several comfy, leather recliners lined the walls of the large treatment space. I chose a seat on the interior wall to my left because from there I could look out the windows on both the adjoining, and the opposite wall. A nurse that I recognized from my recent five-day hospital stay was there to access my medi-port for the first time.
The port is situated about three inches below my left collar-bone. It looks something like a very large mosquito bite, and feels like a marble under my skin. Attached to the port is a catheter that threads into the superior vena cava. My surgeon explained that having a direct route to the heart saves the smaller veins from being damaged by the harsh chemo drugs. He warned me not to let anyone but a nurse trained in using the port to "go near it" because of its potential to introduce bacteria straight to the heart, which would then efficiently pump them everywhere.
My nurse that morning displayed with gloved hands the harpoon that she intended to punch through my skin and into my port in order to "access" it. It resembles a hefty paperclip, bent at a right angle. She disinfected the area around the port, then sprayed a smelly and not-so-numbing numbing agent over it, and then stabbed that thing right into me (gahhhhh!). It hurt! She arranged the attached catheter into a gentle turn, then covered both it and the needle with a clear, sticky dressing as big as the palm of my hand. I stared out a window during the stabbing and sticker-ing and mentally congratulated myself for not passing out. I'm kind of a wimp when it comes to most procedures, especially ones involving harpoons.
Blood was drawn and analyzed in the on-site lab. (Chemo spells disaster to blood cells, so a complete-blood-count precedes every treatment session to determine whether or not the patient is healthy enough to proceed.) Anti-nausea meds and a steroid were hung on the I.V. pole and slowly dripped into me via the port. The oncologist and the hematologist each filtered in and out several times, checking, asking, reassuring. Then the oncologist brought the MRI report in and announced, "There is nothing to concern us with this report. Nothing with balance, and no cancer there." What a relief! My wobbliness would diminished as I recovered from surgery.
Once the first round of meds emptied, others were hung. Oxaliplatin, the heavy-hitter, and Leucovorin, which is a "helper" to another drug went in over the next four hours. When those finished, the nurse unhooked me from the various bags of meds, and attached me to a portable chemo-pump instead. The pump would administer 5FU (fluorouracil) continuously over the next forty-six hours.
My new companion, the pump, was about the size of a paperback. It was tucked into a black polyester carrying case that I could sling over my shoulder like a really ugly purse. A long, thin hose snaked out of it and connected to the harpoon in my chest. It chattered quietly every couple of minutes. This pump would literally be attached to me via the harpoon in my port for the next two days whether I shopped, showered, or slept. I understood logically that the pump was a triumph of biomedical engineering, but emotionally it felt like a ball and chain.
Before letting us leave, the oncologist double-checked that I was in possession of her business card, and encouraged me to call "any time, with any question". She reviewed the potential side-effects I might experience, giving special attention to oxaliplatin. My impression of the lengthy exchange boiled down to this: Watch out for all things cold! Do not touch them! Do not eat them! Do not even think about drinking them! COLD is not your friend for now. Have a nice day.
I thanked the doctor, scheduled the next four treatments, and then we left. We stopped in to pray at the church across the street before finding a place for lunch. It was well past one o'clock.
Next stop: Wendy's drive-thru, where side-effects first materialized. The grilled chicken sandwich that I ordered (minus tomato) seemed--to my chemo-soaked system--to have the texture of styrofoam. It was as though I could feel each fiber of the chicken breast snapping and squeaking against my teeth as I bit through it. Just remembering it sends a shiver down my spine...chicken-flavored styrofoam...gack.
Next, I cautiously--so very cautiously--grasped the paper cup containing Patrick's ice-cold Diet Pepsi. I ordered none for myself because two minutes earlier at the drive-thru speaker I had imagined myself a Good and Compliant Patient. Being face-to-face with a delicious, frosty drink however, made me think that "Mostly Compliant" might just work. The touch-test revealed no problem and so despite my oncologist's earlier admonition, I took a tiny, little sip of the icy cold soda.
...and then my brain exploded. The End.
Ha! Not exactly. What really happened is that the roof of my mouth was blasted with an instant freeze-ray. In a split-second I felt awake. Every nerve ending seemed suddenly jolted to attention. I was "awake" as in, someone just plunged me into a vat of ice water, awake. I felt shockingly, bracingly AWAKE.
And since that went over so well, I took another sip.
Me: Wow, this is great!
Patrick: You are so weird.
Me: Gimme that drink.
Got home; got nauseous. Blarghhh...nausea...Zofran...tried to sleep with the chemo pump chattering away. My mind was drowsy, but my body was abuzz. Sleep didn't happen. I prayed for perseverance. One down. Eleven more to go. The treatments stretched out ahead of me like hurdles on a never-ending track. It seemed almost impossible that I'd ever reach the end of them.
Several comfy, leather recliners lined the walls of the large treatment space. I chose a seat on the interior wall to my left because from there I could look out the windows on both the adjoining, and the opposite wall. A nurse that I recognized from my recent five-day hospital stay was there to access my medi-port for the first time.
The port is situated about three inches below my left collar-bone. It looks something like a very large mosquito bite, and feels like a marble under my skin. Attached to the port is a catheter that threads into the superior vena cava. My surgeon explained that having a direct route to the heart saves the smaller veins from being damaged by the harsh chemo drugs. He warned me not to let anyone but a nurse trained in using the port to "go near it" because of its potential to introduce bacteria straight to the heart, which would then efficiently pump them everywhere.
My nurse that morning displayed with gloved hands the harpoon that she intended to punch through my skin and into my port in order to "access" it. It resembles a hefty paperclip, bent at a right angle. She disinfected the area around the port, then sprayed a smelly and not-so-numbing numbing agent over it, and then stabbed that thing right into me (gahhhhh!). It hurt! She arranged the attached catheter into a gentle turn, then covered both it and the needle with a clear, sticky dressing as big as the palm of my hand. I stared out a window during the stabbing and sticker-ing and mentally congratulated myself for not passing out. I'm kind of a wimp when it comes to most procedures, especially ones involving harpoons.
Blood was drawn and analyzed in the on-site lab. (Chemo spells disaster to blood cells, so a complete-blood-count precedes every treatment session to determine whether or not the patient is healthy enough to proceed.) Anti-nausea meds and a steroid were hung on the I.V. pole and slowly dripped into me via the port. The oncologist and the hematologist each filtered in and out several times, checking, asking, reassuring. Then the oncologist brought the MRI report in and announced, "There is nothing to concern us with this report. Nothing with balance, and no cancer there." What a relief! My wobbliness would diminished as I recovered from surgery.
Once the first round of meds emptied, others were hung. Oxaliplatin, the heavy-hitter, and Leucovorin, which is a "helper" to another drug went in over the next four hours. When those finished, the nurse unhooked me from the various bags of meds, and attached me to a portable chemo-pump instead. The pump would administer 5FU (fluorouracil) continuously over the next forty-six hours.
My new companion, the pump, was about the size of a paperback. It was tucked into a black polyester carrying case that I could sling over my shoulder like a really ugly purse. A long, thin hose snaked out of it and connected to the harpoon in my chest. It chattered quietly every couple of minutes. This pump would literally be attached to me via the harpoon in my port for the next two days whether I shopped, showered, or slept. I understood logically that the pump was a triumph of biomedical engineering, but emotionally it felt like a ball and chain.
Before letting us leave, the oncologist double-checked that I was in possession of her business card, and encouraged me to call "any time, with any question". She reviewed the potential side-effects I might experience, giving special attention to oxaliplatin. My impression of the lengthy exchange boiled down to this: Watch out for all things cold! Do not touch them! Do not eat them! Do not even think about drinking them! COLD is not your friend for now. Have a nice day.
I thanked the doctor, scheduled the next four treatments, and then we left. We stopped in to pray at the church across the street before finding a place for lunch. It was well past one o'clock.
Next stop: Wendy's drive-thru, where side-effects first materialized. The grilled chicken sandwich that I ordered (minus tomato) seemed--to my chemo-soaked system--to have the texture of styrofoam. It was as though I could feel each fiber of the chicken breast snapping and squeaking against my teeth as I bit through it. Just remembering it sends a shiver down my spine...chicken-flavored styrofoam...gack.
Next, I cautiously--so very cautiously--grasped the paper cup containing Patrick's ice-cold Diet Pepsi. I ordered none for myself because two minutes earlier at the drive-thru speaker I had imagined myself a Good and Compliant Patient. Being face-to-face with a delicious, frosty drink however, made me think that "Mostly Compliant" might just work. The touch-test revealed no problem and so despite my oncologist's earlier admonition, I took a tiny, little sip of the icy cold soda.
...and then my brain exploded. The End.
Ha! Not exactly. What really happened is that the roof of my mouth was blasted with an instant freeze-ray. In a split-second I felt awake. Every nerve ending seemed suddenly jolted to attention. I was "awake" as in, someone just plunged me into a vat of ice water, awake. I felt shockingly, bracingly AWAKE.
And since that went over so well, I took another sip.
Me: Wow, this is great!
Patrick: You are so weird.
Me: Gimme that drink.
Got home; got nauseous. Blarghhh...nausea...Zofran...tried to sleep with the chemo pump chattering away. My mind was drowsy, but my body was abuzz. Sleep didn't happen. I prayed for perseverance. One down. Eleven more to go. The treatments stretched out ahead of me like hurdles on a never-ending track. It seemed almost impossible that I'd ever reach the end of them.
Saturday, April 25, 2015
September 28, 2013--Story of an MRI
Patrick drove me to the hospital on Saturday afternoon for my first MRI. The twelve-year-old-looking boy behind the counter gave me a clipboard with many, many pages of information to review, initial, sign, date and return. It was disconcerting to have to check the box next to "cancer" on the medical history form.
Another young person, a girl this time, W., ushered me to the back and asked a bunch of questions. Every surface was brightly lit, clean, and appeared shiny-new and sterile. Quietly chirping cricket noises and tweeting sounds permeated the space. These were coming from the MRI machine, but I didn't know that at the time. I thought I was experiencing manufactured ambiance, piped-in nature sounds to calm nervous patients.
The technician was a woman, T., and she asked what sort of music I'd like to listen to while I was having the test. I chose "classical", and she asked, "Would piano be OK?" Perfect. Headphones on, I was instructed to lie down on the platform, which seemed to me to be about the width of a deck of cards. W. positioned me so that my shoulders hit the stops, and my head remained stationary. She then snapped a white, plastic, stout-looking cage apparatus over my face. I was good to go.
T. and W. stepped into the control room. The table inched forward into the machine, the music in my headphones began, and I stayed still. (I do "still" pretty well these days.) Though I'm confident that the Angels were poised and ready, I begged no panicked pleas for help this time.
Then the noise! Lots of noise. First it was beeping. Loud, loud beeping. It was coming from the left. I expected it to rotate around and over me and end up on the right, but no. All the noises seemed to come from the left and remain there. That's how it seemed, anyway. The table rumbled. It shook! Then the sounds changed to intermittent buzzing. The table halted. Then another kind of noise, like an angry fire alarm blared. I lost track of all of the different sounds. More table shaking! Close to the end of the procedure, contrast was injected through a needle in my arm (no I.V., yay!) and then the test continued on in its jarring, boisterous way. The whole thing took about 40 minutes.
W.: How was it?
Me: Just like Disney, but with less screaming.
I was handed a CD with all sorts of way-cool pictures of my brain that I of course have no idea how to interpret. I had fun looking at them. My sister has some experience reading MRIs, and she pointed out various structures and made lots of encouraging "oohs" and "ahs" as we scrolled through the images together later at my house.
I am an engineer by training, but spent my professional life writing computer applications. Even so, I have always entertained a strong pull toward graphic arts and so I was pleased to discover that the right hemisphere (creative/spatial) of my brain appeared a little bigger than the left.
What kind of engineer does that make me? (an unemployed one! haha)
I wonder why I have so much trouble reading maps.
Another young person, a girl this time, W., ushered me to the back and asked a bunch of questions. Every surface was brightly lit, clean, and appeared shiny-new and sterile. Quietly chirping cricket noises and tweeting sounds permeated the space. These were coming from the MRI machine, but I didn't know that at the time. I thought I was experiencing manufactured ambiance, piped-in nature sounds to calm nervous patients.
The technician was a woman, T., and she asked what sort of music I'd like to listen to while I was having the test. I chose "classical", and she asked, "Would piano be OK?" Perfect. Headphones on, I was instructed to lie down on the platform, which seemed to me to be about the width of a deck of cards. W. positioned me so that my shoulders hit the stops, and my head remained stationary. She then snapped a white, plastic, stout-looking cage apparatus over my face. I was good to go.
T. and W. stepped into the control room. The table inched forward into the machine, the music in my headphones began, and I stayed still. (I do "still" pretty well these days.) Though I'm confident that the Angels were poised and ready, I begged no panicked pleas for help this time.
Then the noise! Lots of noise. First it was beeping. Loud, loud beeping. It was coming from the left. I expected it to rotate around and over me and end up on the right, but no. All the noises seemed to come from the left and remain there. That's how it seemed, anyway. The table rumbled. It shook! Then the sounds changed to intermittent buzzing. The table halted. Then another kind of noise, like an angry fire alarm blared. I lost track of all of the different sounds. More table shaking! Close to the end of the procedure, contrast was injected through a needle in my arm (no I.V., yay!) and then the test continued on in its jarring, boisterous way. The whole thing took about 40 minutes.
W.: How was it?
Me: Just like Disney, but with less screaming.
I was handed a CD with all sorts of way-cool pictures of my brain that I of course have no idea how to interpret. I had fun looking at them. My sister has some experience reading MRIs, and she pointed out various structures and made lots of encouraging "oohs" and "ahs" as we scrolled through the images together later at my house.
I am an engineer by training, but spent my professional life writing computer applications. Even so, I have always entertained a strong pull toward graphic arts and so I was pleased to discover that the right hemisphere (creative/spatial) of my brain appeared a little bigger than the left.
What kind of engineer does that make me? (an unemployed one! haha)
I wonder why I have so much trouble reading maps.
Friday, April 24, 2015
September 26, 2013: Part 2
Read part 1 here.
The hematologist returned to the exam room with the promised paperwork. He wanted me to have an MRI of the brain. Colon cancer can spread anywhere, even the brain. It was a terrifying prospect. Everything was being done in a rushed manner. Start-of-Chemo was next Monday, and it was already Thursday. He wanted the test performed before chemo began.
In retrospect, I think the urgency was because mets to the brain would've confirmed a stage IV diagnosis. My upcoming chemotherapy was based on a stage IIIc determination, the treatment of which involves different drugs than would be used for a stage IV patient. This question needed to be sorted, and quickly.
I was ushered onto one of those four-wheeled, spinny stools that doctors use, which was placed in the hallway at a pass-through window near where one of the office clerks sat. She phoned my insurance company, and then the hospital, and then handed the receiver to me. My input was required in order to schedule the appointment.
A woman's voice over the phone asked me many, many questions in a nonchalant way, the most gruesome of which was, "Have you ever held a job where flying metal shards could have entered your eye?"
In a split second, my brain held this conversation with itself: "Flying metal shards? ENTERED? What?!?... 'Entered' seems like such a gentle word. They wouldn't just 'enter', would they? They'd sort of get SHOT like tiny, destructive bullets RIPPING INTO the eye, wouldn't they? WOULDN'T THEY?!"
My response to the lady's question came slowly. It was a drawn-out, "Nooo," in a mostly-confident, if slightly horrified tone.
Thanks to this happy exchange, I then imagined streams of metal shards flying out of each eyeball, racing toward the gigantic magnets inside the MRI machine. What would THAT be like?! ack! ack! ack! I worried that I would fall off the little spinny stool in a dead faint. No longer engaged in the conversation; I absorbed none of what was being said. After "Thank you," and "good-bye," I noticed that I had scribbled these mysterious words: "flags", "3:45", and "zipper".
I handed the receiver back to the clerk. I was troubled that I was unable to recollect the conversation. It was as though my brain had erased itself. Luckily, paperwork was handed to me that included all of the details of my appointment, which I discovered was scheduled to occur in two days.
I decided that what I needed most was a nap. It had been a long month already, and there were four whole days of it left.
The hematologist returned to the exam room with the promised paperwork. He wanted me to have an MRI of the brain. Colon cancer can spread anywhere, even the brain. It was a terrifying prospect. Everything was being done in a rushed manner. Start-of-Chemo was next Monday, and it was already Thursday. He wanted the test performed before chemo began.
In retrospect, I think the urgency was because mets to the brain would've confirmed a stage IV diagnosis. My upcoming chemotherapy was based on a stage IIIc determination, the treatment of which involves different drugs than would be used for a stage IV patient. This question needed to be sorted, and quickly.
I was ushered onto one of those four-wheeled, spinny stools that doctors use, which was placed in the hallway at a pass-through window near where one of the office clerks sat. She phoned my insurance company, and then the hospital, and then handed the receiver to me. My input was required in order to schedule the appointment.
A woman's voice over the phone asked me many, many questions in a nonchalant way, the most gruesome of which was, "Have you ever held a job where flying metal shards could have entered your eye?"
In a split second, my brain held this conversation with itself: "Flying metal shards? ENTERED? What?!?... 'Entered' seems like such a gentle word. They wouldn't just 'enter', would they? They'd sort of get SHOT like tiny, destructive bullets RIPPING INTO the eye, wouldn't they? WOULDN'T THEY?!"
My response to the lady's question came slowly. It was a drawn-out, "Nooo," in a mostly-confident, if slightly horrified tone.
Thanks to this happy exchange, I then imagined streams of metal shards flying out of each eyeball, racing toward the gigantic magnets inside the MRI machine. What would THAT be like?! ack! ack! ack! I worried that I would fall off the little spinny stool in a dead faint. No longer engaged in the conversation; I absorbed none of what was being said. After "Thank you," and "good-bye," I noticed that I had scribbled these mysterious words: "flags", "3:45", and "zipper".
I handed the receiver back to the clerk. I was troubled that I was unable to recollect the conversation. It was as though my brain had erased itself. Luckily, paperwork was handed to me that included all of the details of my appointment, which I discovered was scheduled to occur in two days.
I decided that what I needed most was a nap. It had been a long month already, and there were four whole days of it left.
Thursday, April 23, 2015
September 26, 2013: Part 1
My oncologist read the radiologist's report just a couple of days after the first PET scan was performed. The news was great--it showed no evidence that those things in my lungs were cancer. Six nodes--three in each lung--were noted on the report. They ranged from 5 mm to 11 mm across, but they showed no increased metabolic activity. Comparing to the (kidney) CT from fifteen months prior, it was completely reasonable to allow that the nodes might be nothing to worry about. "...however, we will keep a close eye on them," she promised.
Hypodense lesions in the liver that had been noted on the more-recent CT scan (the one just prior to colon surgery) were not showing up on the PET scan. One might have assumed this meant "no evidence of disease", however, the radiologist added a further comment, "Please note size of liver lesions is below the sensitivity of the PET." Bummer.
If you stack up enough radiologists' reports, you begin to notice that each writer's personality shines through the medical jargon. Some radiologists seem more optimistic than others. Some are more meticulous in the way they report findings, too. It is only by following a series of scans over many months that the true story of what cancer is doing (or not doing) becomes evident. At least, that is how it has played out in my case.
If you want to be an advocate for yourself, reading your own radiology reports is vital. Whether you download them (patient portals are The Best Thing Ever) before meeting with your doctor, or you obtain a copy from your doctor in person is a decision to consider carefully. Trust your medical team, and always read the reports. The two are not mutually exclusive.
* * *
At the clinic for the final visit before chemo began, my unsteadiness concerned the hematologist. Every time I stood up, I became dizzy or blacked-out altogether for a few seconds. I developed a new habit of holding onto something sturdy each time I stood up, to hopefully remain upright. Sometimes it didn't work and I would need to sit right back down, wait, and try again.
Upon hearing this development, the good doctor had some interesting tests for me that day. Patrick joined me in the exam room.
Doc: Please stand up, and walk across the floor.
Me (unspoken): Ha. I got this. [walk across the floor without incident]
Doc: OK, now walk back, heel-to-toe.
Me: Ha! I've seen my kids do this at the pediatrician's a million times. Or...twenty, maybe. [commence walking heel-to-toe like a boss] No problemo. [swoon] OK, maybe a slight problemo. But. I did it. I totally did it, and that one little wobble should not count. Maybe he didn't even notice! I will now SIT DOWN without wobbling, as though everything is normal because: Everything Is Normal. Also, if he asks me to walk like a duck next (as the pediatrician always asks the kids) I am refusing.
Patrick, sounding dubious: You couldn't see a thing, could you?
Me: I can't hear you.
Doc: OK stand here in front of me with your arms out in front of you like this. [He stretched out his arms, and held my hands, keeping my arms parallel to the floor.] Good. Now close your eyes.
Me: This is weird. [eyes closed]
Just then, the sneaky doctor let go of my hands, and almost immediately I toppled backwards, nearly giving already-stressed Patrick a heart attack as he lurched forward to catch me. Needless to say, this was an EPIC FAIL of remaining vertical.
The doctor practically hurtled out of the room, calling over his shoulder as he went, "I will be right back. I need to get you some paperwork."
Me: Oh good. A little paperwork is probably just what I need right now.
Hypodense lesions in the liver that had been noted on the more-recent CT scan (the one just prior to colon surgery) were not showing up on the PET scan. One might have assumed this meant "no evidence of disease", however, the radiologist added a further comment, "Please note size of liver lesions is below the sensitivity of the PET." Bummer.
If you stack up enough radiologists' reports, you begin to notice that each writer's personality shines through the medical jargon. Some radiologists seem more optimistic than others. Some are more meticulous in the way they report findings, too. It is only by following a series of scans over many months that the true story of what cancer is doing (or not doing) becomes evident. At least, that is how it has played out in my case.
If you want to be an advocate for yourself, reading your own radiology reports is vital. Whether you download them (patient portals are The Best Thing Ever) before meeting with your doctor, or you obtain a copy from your doctor in person is a decision to consider carefully. Trust your medical team, and always read the reports. The two are not mutually exclusive.
* * *
At the clinic for the final visit before chemo began, my unsteadiness concerned the hematologist. Every time I stood up, I became dizzy or blacked-out altogether for a few seconds. I developed a new habit of holding onto something sturdy each time I stood up, to hopefully remain upright. Sometimes it didn't work and I would need to sit right back down, wait, and try again.
Upon hearing this development, the good doctor had some interesting tests for me that day. Patrick joined me in the exam room.
Doc: Please stand up, and walk across the floor.
Me (unspoken): Ha. I got this. [walk across the floor without incident]
Doc: OK, now walk back, heel-to-toe.
Me: Ha! I've seen my kids do this at the pediatrician's a million times. Or...twenty, maybe. [commence walking heel-to-toe like a boss] No problemo. [swoon] OK, maybe a slight problemo. But. I did it. I totally did it, and that one little wobble should not count. Maybe he didn't even notice! I will now SIT DOWN without wobbling, as though everything is normal because: Everything Is Normal. Also, if he asks me to walk like a duck next (as the pediatrician always asks the kids) I am refusing.
Patrick, sounding dubious: You couldn't see a thing, could you?
Me: I can't hear you.
Doc: OK stand here in front of me with your arms out in front of you like this. [He stretched out his arms, and held my hands, keeping my arms parallel to the floor.] Good. Now close your eyes.
Me: This is weird. [eyes closed]
Just then, the sneaky doctor let go of my hands, and almost immediately I toppled backwards, nearly giving already-stressed Patrick a heart attack as he lurched forward to catch me. Needless to say, this was an EPIC FAIL of remaining vertical.
The doctor practically hurtled out of the room, calling over his shoulder as he went, "I will be right back. I need to get you some paperwork."
Me: Oh good. A little paperwork is probably just what I need right now.
Wednesday, April 22, 2015
September 25, 2013: Story of a PET Scan
I shared the PET scan adventure with friends and family:
Sent: Thursday, September 26, 2013 1:31 PM
Subject: Story of a PET scan. And more.
Greetings!
Yesterday's PET scan was a study in stillness. I was led to a recliner, injected (via I.V.) with radioactive glucose, and told, "No texting, no talking, no moving. Napping would be best. But stay still." So there I was. Still. Very, very still. I prayed a mindful, deliberate rosary in my head--Glorious Mysteries since it was a Wednesday (it's a Catholic thing). Fifty minutes flew.
Next, into the machine for 21 minutes, with both arms stretched over my head. Again they instructed me: be still.
I was trying to imagine just HOW still something could be. Nothing alive was as still as I tried to be.
But then, suddenly everything I imagined started flopping around! I asked my Guardian Angel to make me still. That worked great until I felt a sneeze. It was not a good time to sneeze. Never mind the close quarters--my abdomen had just endured major surgery and was still healing. A sneeze would've been unspeakably painful.
So then (I don't know where this idea came from) I prayed rather frantically to your Guardian Angels to please help me to keep from sneezing. I don't even know if that is a thing. But! I was as still as a statue after that desperate plea, except for breathing (which was allowed). I thanked all the angels! and God. and Mary. and all the saints for keeping me still.
When the scan was over, I requested a copy of the CD. It held 1,216 scanned images. Amazing. I don't know how to read it of course, but software is included that lets you zoom right through the body to examine the marvels of God's creation.
Next, I was off to surgery for the port placement. This was an lesson in patience. Surgery was scheduled for 12:15 PM. I got to pre-op at 10:00 AM since I was already in the hospital, but surgery was delayed until 2:00 PM. Our friend-doctor, who works at that hospital, surprised us with a visit (so.very.appreciated!), and then Patrick and I watched stand-up comedy on YouTube to pass the time.
Dr. Anesthesiologist came in and asked his questions and then ended with these marvelous words in all sincerity: "I think you should find this procedure to be not unpleasant."
I don't want to give the impression that the doc had no beside manner, because he did. He was great. But after he said what he did, it caused waves and waves of unstoppable laughter in me. "Really? That's the best you've got?" I sputtered, "'not unpleasant?!'" Thankfully, he laughed along with us.
Then, in strode the surgeon.
This surgeon has a reputation for whipping out a ball-point pen at a moment's notice, using it to illustrate his commentary. If no paper is in the immediate vicinity, he will sometimes sketch directly on the bed sheets. This day, in pre-op, he drew on his own scrubs, right across his substantial belly. He drew diagrams of ports! He explained the type that he would be placing, and his reasons for choosing it to Patrick and me, his captive audience.
Then! Then! The surgeon gave the OK for me to eat all of the stuff that he had banned three weeks prior. (Hello, almonds. How I've missed you.) BEST PART: He said, "I want you to eat more. You should eat ALL of the food...milkshakes, cake. Get some calories. I want you to gain back the weight you lost (in the hospital)."
Wow. What? He said it. For real.
Surgery went well. My shoulder hurts, but no big deal. I am to avoid activities like "vacuuming and washing windows". Check. I was quite wobbly when I got home. You'd think that with all the lying in bed all day that I would've been ready to, you know, stand up and remain that way for...seconds, but no.
More sitting; less walking.
The surgical sites from three weeks ago still hurt, but the doc says all is well on that front. Three new scars from that. One more from today.
You guys are excellent Prayer Warriors! Truly excellent. Thank you!
Celine
Critical steps were now accomplished, paving the way for chemotherapy to start. One more hurdle remained, however. It would be revealed at the next day's visit to the oncology clinic, leading to another test; another "adventure".
Sent: Thursday, September 26, 2013 1:31 PM
Subject: Story of a PET scan. And more.
Greetings!
Yesterday's PET scan was a study in stillness. I was led to a recliner, injected (via I.V.) with radioactive glucose, and told, "No texting, no talking, no moving. Napping would be best. But stay still." So there I was. Still. Very, very still. I prayed a mindful, deliberate rosary in my head--Glorious Mysteries since it was a Wednesday (it's a Catholic thing). Fifty minutes flew.
Next, into the machine for 21 minutes, with both arms stretched over my head. Again they instructed me: be still.
I was trying to imagine just HOW still something could be. Nothing alive was as still as I tried to be.
But then, suddenly everything I imagined started flopping around! I asked my Guardian Angel to make me still. That worked great until I felt a sneeze. It was not a good time to sneeze. Never mind the close quarters--my abdomen had just endured major surgery and was still healing. A sneeze would've been unspeakably painful.
So then (I don't know where this idea came from) I prayed rather frantically to your Guardian Angels to please help me to keep from sneezing. I don't even know if that is a thing. But! I was as still as a statue after that desperate plea, except for breathing (which was allowed). I thanked all the angels! and God. and Mary. and all the saints for keeping me still.
When the scan was over, I requested a copy of the CD. It held 1,216 scanned images. Amazing. I don't know how to read it of course, but software is included that lets you zoom right through the body to examine the marvels of God's creation.
Next, I was off to surgery for the port placement. This was an lesson in patience. Surgery was scheduled for 12:15 PM. I got to pre-op at 10:00 AM since I was already in the hospital, but surgery was delayed until 2:00 PM. Our friend-doctor, who works at that hospital, surprised us with a visit (so.very.appreciated!), and then Patrick and I watched stand-up comedy on YouTube to pass the time.
Dr. Anesthesiologist came in and asked his questions and then ended with these marvelous words in all sincerity: "I think you should find this procedure to be not unpleasant."
I don't want to give the impression that the doc had no beside manner, because he did. He was great. But after he said what he did, it caused waves and waves of unstoppable laughter in me. "Really? That's the best you've got?" I sputtered, "'not unpleasant?!'" Thankfully, he laughed along with us.
Then, in strode the surgeon.
This surgeon has a reputation for whipping out a ball-point pen at a moment's notice, using it to illustrate his commentary. If no paper is in the immediate vicinity, he will sometimes sketch directly on the bed sheets. This day, in pre-op, he drew on his own scrubs, right across his substantial belly. He drew diagrams of ports! He explained the type that he would be placing, and his reasons for choosing it to Patrick and me, his captive audience.
Then! Then! The surgeon gave the OK for me to eat all of the stuff that he had banned three weeks prior. (Hello, almonds. How I've missed you.) BEST PART: He said, "I want you to eat more. You should eat ALL of the food...milkshakes, cake. Get some calories. I want you to gain back the weight you lost (in the hospital)."
Wow. What? He said it. For real.
Surgery went well. My shoulder hurts, but no big deal. I am to avoid activities like "vacuuming and washing windows". Check. I was quite wobbly when I got home. You'd think that with all the lying in bed all day that I would've been ready to, you know, stand up and remain that way for...seconds, but no.
More sitting; less walking.
The surgical sites from three weeks ago still hurt, but the doc says all is well on that front. Three new scars from that. One more from today.
You guys are excellent Prayer Warriors! Truly excellent. Thank you!
Celine
Critical steps were now accomplished, paving the way for chemotherapy to start. One more hurdle remained, however. It would be revealed at the next day's visit to the oncology clinic, leading to another test; another "adventure".
Tuesday, April 21, 2015
September 24, 2013: Urology Visit and More Surgery
As I would understand better later, my oncologist is very cautious. She wants all.the.things to have follow-up with various specialists. I was told to seek out a urologist to address the small stone that was noted on the pathology report. "Already have one," I said.
Over the spring and summer of 2012 two kidney stones--one on each side--had to come out. What's more, they were too big to blast out via shock waves in a water bath. They had to be removed surgically, through my back. This medical development was the first time I had seen a doctor for anything more serious than the flu in my entire adult life, barring pregnancy. (Which totally doesn't count.)
Someday maybe I'll share the whole story, but one thing is relevant to the cancer journey. During the course of treatment for kidney stones, I was taken for a CT scan one late night in the E.R. This was the first one I'd ever had. My right lung was partially collapsed (thus the reason for the E.R. trip) and those scans showed two tiny spots--one on each lung. They weren't noted on the report, but fifteen months and a cancer diagnosis later, that scan took on new significance. It would be a useful tool for comparison. It would be a reason to hope.
I saw the urologist the following week at my oncologist's urging. He told me how sorry he was that I was now dealing with cancer. He said that he went back to check every test he'd ever ordered on me, and nothing hinted at a growing tumor at that time.
He told me about the new stone in my left kidney. Considering I was facing the start of chemotherapy in mere days, I was less than keen to hear his plans for its removal.
"Have you got any good news for me, Doc?"
"Well...your right kidney looks great!" he granted.
"I'll take it!" I spouted. Some good news after all. He then told me that the stone could be dealt with later--after chemo was over. All the post-surgery bladder tests had shown expected results, and so I was free to go.
The very next day, I was scheduled for both a PET scan and surgery to place a medi-port. Part of the blast-o-gram:
Sent: Tuesday, September 24, 2013 10:18 PM
Subject: Tues. Night
Tomorrow, bright and early, I will have a PET scan w/contrast. Surgery for the port placement, which was originally scheduled for Thurs., is now also planned for tomorrow. There were a lot of phone calls yesterday from numerous people with questions and issues swirling around these two procedures and how to combine them on one day, but I'm happy to report that those kinks were worked out. Everyone is working hard to make sure the start of chemo doesn't get delayed.
Thank you for your prayers. They are being heard!
We are so, so grateful for ALL the ways you're supporting us.
Tomorrow morning I'll be RADIOACTIVE for something like 6 hours.
PET scans show structure somewhat less precisely than CT scans, but more importantly, they show metabolic activity. Areas of tumor growth tend to "glow" on a PET scan, and so we hoped and prayed that the next day's scan would be peacefully dark.
Over the spring and summer of 2012 two kidney stones--one on each side--had to come out. What's more, they were too big to blast out via shock waves in a water bath. They had to be removed surgically, through my back. This medical development was the first time I had seen a doctor for anything more serious than the flu in my entire adult life, barring pregnancy. (Which totally doesn't count.)
Someday maybe I'll share the whole story, but one thing is relevant to the cancer journey. During the course of treatment for kidney stones, I was taken for a CT scan one late night in the E.R. This was the first one I'd ever had. My right lung was partially collapsed (thus the reason for the E.R. trip) and those scans showed two tiny spots--one on each lung. They weren't noted on the report, but fifteen months and a cancer diagnosis later, that scan took on new significance. It would be a useful tool for comparison. It would be a reason to hope.
I saw the urologist the following week at my oncologist's urging. He told me how sorry he was that I was now dealing with cancer. He said that he went back to check every test he'd ever ordered on me, and nothing hinted at a growing tumor at that time.
He told me about the new stone in my left kidney. Considering I was facing the start of chemotherapy in mere days, I was less than keen to hear his plans for its removal.
"Have you got any good news for me, Doc?"
"Well...your right kidney looks great!" he granted.
"I'll take it!" I spouted. Some good news after all. He then told me that the stone could be dealt with later--after chemo was over. All the post-surgery bladder tests had shown expected results, and so I was free to go.
The very next day, I was scheduled for both a PET scan and surgery to place a medi-port. Part of the blast-o-gram:
Sent: Tuesday, September 24, 2013 10:18 PM
Subject: Tues. Night
Tomorrow, bright and early, I will have a PET scan w/contrast. Surgery for the port placement, which was originally scheduled for Thurs., is now also planned for tomorrow. There were a lot of phone calls yesterday from numerous people with questions and issues swirling around these two procedures and how to combine them on one day, but I'm happy to report that those kinks were worked out. Everyone is working hard to make sure the start of chemo doesn't get delayed.
Thank you for your prayers. They are being heard!
We are so, so grateful for ALL the ways you're supporting us.
Tomorrow morning I'll be RADIOACTIVE for something like 6 hours.
PET scans show structure somewhat less precisely than CT scans, but more importantly, they show metabolic activity. Areas of tumor growth tend to "glow" on a PET scan, and so we hoped and prayed that the next day's scan would be peacefully dark.
Monday, April 20, 2015
September 9--13, 2013: Homecoming. Post-Op. Staging.
On the Monday following Thursday's surgery, I was released from the hospital.
"No driving, no vacuuming, no lifting, and no eating leafy greens or nuts" were among the restrictions I was given. None of that mattered to me in the least. I just wanted my freedom.
I got home in the early evening. I claimed the recliner, and sat with one little boy perched on each side of me. They had been watching "The Princess and the Frog," and I snuggled with them and pretended to watch, too. I couldn't focus on the story though; my head and my heart were too full.
On Tuesday, the pathology report was released. I don't remember now how I got my hands on it. In big bold letters the report read: "***Attention: Positive Report***". There was no mistaking that it contained bad news. As I read through the items in the report, I recalled my surgeon's voice in the hospital when shortly after informing me that he had removed 8.5 inches of colon, 20% of my bladder, 21 lymph nodes, and an artery, he assured me in his trademark confident tone that I'd "never miss 'em."
Friday I met with the surgeon in his office. After a quick exam, his expression was solemn. Though he was frowning, he stated how "ecstatic" he was with my progress. We discussed my need for a medi-port to make receiving chemotherapy easier. That procedure would happen in the hospital under anesthesia in a few days.
Almost two weeks to the minute after hearing that I had cancer, I sat in an oncologist's office to learn what treatment she had planned. A hematologist worked with her, and it was he who sat down with me and Patrick in one of the exam rooms that day.
As discussion of my case progressed, it felt to me like the doctor was talking about someone else. His words did not sink in. It was all very interesting from an academic standpoint, the TNM system that oncologists use to describe cancer. He had staged my case as IIIc, only because metastasis wasn't proven. "Tiny spots in the liver and lung are suspicious, but because they're not proven, we've put you at IIIc." I knew this was very serious subject matter, but I couldn't absorb it. It wasn't until I looked across the room at my husband's ashen face and mournful expression that I began to understand that this news was hurting him. I had never seen him so sad. My heart ached for him.
Slowly, the information crept into my consciousness. This could kill me, even though the tumor is gone now. Cancer could still kill me. It could happen soon. How could it be?
The doctor went on to explain that they were going to pursue a "curative intent". I'd be scanned periodically, and would receive chemotherapy. When he described the horrible side-effects that might happen--at this point there was some debate about whether I'd be on irinotecan or oxaliplatin--diarrhea starting immediately upon infusion ("You'll take two Immodium before each treatment," he cautioned), baldness, mouth sores, fatigue, nausea. All I could do is stare off into space.
Eventually, I managed to deliver the most ineffectual understatement ever uttered, "This is really going to suck."
Sunday, April 19, 2015
September 6, 2013: So Hungry
I spent five days in the hospital. I remember getting up with help from the nurse. "Walking," she informed me, "will help 'wake up' your organs. They don't like being touched in any way. Their response is to freeze if they're so much as brushed against. It's almost like your intestines are a separate being."
Out of bed, holding onto the roving I.V. pole for balance, the nurse and I headed out the door to roam the halls for a bit. I didn't have too much trouble walking. I was, however, very, very hungry. I was told that I couldn't eat anything until my intestines "woke up". It could take hours or days, there was no way to predict.
Visitors came. Thank God for visitors! I think you have to be pretty brave to visit somebody in the hospital. You don't know if the patient will be sad, or scary-sick. You could be stepping into a hornet's nest. I thought all of my visitors were courageous, and was delighted to see each one!
Doctors cycled in and out. At one point six of them pressed in around the foot of my bed. They all looked concerned, but none had any new information to share with me. "We will know more when pathology is in," said the oncologist. She would repeat this many times over the course of my stay.
I was contentedly naive in those early days, hoping maybe it was a Stage I or II situation. I didn't even understand the stages of disease at that point. I knew that Stage IV was "the worst", but had no experience with cancer or its jargon then. I was willing to stay ignorant for the time being, and concentrate on healing from surgery. Knowing more wouldn't improve that progress, so I didn't press for many details.
Patrick emailed the following:
Sep 6, 2013, at 7:52 AM
Celine says it only hurts when she breathes or moves, but other than that she's alright. The nurses will be starting to get her out of bed today. She has a good attitude about getting up and cooperating with the nurses, so that is good.
Keep praying for us. We have a long way to go.
Patrick
The next day I sent this:
Sent: Saturday, September 7, 2013 7:59 PM
Subject: Saturday
Greetings!
It has been a good day--clear liquids are allowed, yaaay. I am feeling great, just hurts to cough and you know, move certain ways. No big deal. Haven't eaten since Tuesday! The previous Monday was also a fasting day.
Saw many, many docs today. Surgeon wants a bladder x-ray Monday. Oncologist wants a PET scan. Pathology not back yet, so no other plans are being made until they can review that. I saw my GP, urologist, ob/gyn, gastro, oncologist, and the surgeon. Some had better news than others.
Think I will be back home Monday night, but things change pretty quickly around here. But that's the latest guess.
Spirits GREAT and learning the Responsibility of the Present Moment in a whole new way :)
Thank you again for keeping us in prayer.
Celine
Friends were helping to hold down the fort at home, sending meals, and watching kids. My children visited often, and Patrick was there as much as he possibly could be. I warned them all though, "Don't come here smelling of french fries, or I might accidentally gnaw off your arms."
I was sure the hospital staff were trying to starve me to death.
Out of bed, holding onto the roving I.V. pole for balance, the nurse and I headed out the door to roam the halls for a bit. I didn't have too much trouble walking. I was, however, very, very hungry. I was told that I couldn't eat anything until my intestines "woke up". It could take hours or days, there was no way to predict.
Visitors came. Thank God for visitors! I think you have to be pretty brave to visit somebody in the hospital. You don't know if the patient will be sad, or scary-sick. You could be stepping into a hornet's nest. I thought all of my visitors were courageous, and was delighted to see each one!
Doctors cycled in and out. At one point six of them pressed in around the foot of my bed. They all looked concerned, but none had any new information to share with me. "We will know more when pathology is in," said the oncologist. She would repeat this many times over the course of my stay.
I was contentedly naive in those early days, hoping maybe it was a Stage I or II situation. I didn't even understand the stages of disease at that point. I knew that Stage IV was "the worst", but had no experience with cancer or its jargon then. I was willing to stay ignorant for the time being, and concentrate on healing from surgery. Knowing more wouldn't improve that progress, so I didn't press for many details.
Patrick emailed the following:
Sep 6, 2013, at 7:52 AM
Celine says it only hurts when she breathes or moves, but other than that she's alright. The nurses will be starting to get her out of bed today. She has a good attitude about getting up and cooperating with the nurses, so that is good.
Keep praying for us. We have a long way to go.
Patrick
The next day I sent this:
Sent: Saturday, September 7, 2013 7:59 PM
Subject: Saturday
Greetings!
It has been a good day--clear liquids are allowed, yaaay. I am feeling great, just hurts to cough and you know, move certain ways. No big deal. Haven't eaten since Tuesday! The previous Monday was also a fasting day.
Saw many, many docs today. Surgeon wants a bladder x-ray Monday. Oncologist wants a PET scan. Pathology not back yet, so no other plans are being made until they can review that. I saw my GP, urologist, ob/gyn, gastro, oncologist, and the surgeon. Some had better news than others.
Think I will be back home Monday night, but things change pretty quickly around here. But that's the latest guess.
Spirits GREAT and learning the Responsibility of the Present Moment in a whole new way :)
Thank you again for keeping us in prayer.
Celine
Friends were helping to hold down the fort at home, sending meals, and watching kids. My children visited often, and Patrick was there as much as he possibly could be. I warned them all though, "Don't come here smelling of french fries, or I might accidentally gnaw off your arms."
I was sure the hospital staff were trying to starve me to death.
Friday, April 17, 2015
September 4: Breaking the News
Taking a cue from the stranger in the elevator, I decided that I wanted everyone I knew to be informed and praying for me, if they would. Below are parts of that first message--we later called these updates "blast-o-grams"-- to get the word out.
Sent: Wednesday, September 4, 2013 7:33 PM
Subject: Bad News for Celine
Hello,
I need your prayers!
I had a colonoscopy yesterday due to some bleeding problems I'd been having. I was guessing it'd just be polyps, but no. The doc found a tumor...Tomorrow I will have surgery to remove the part of my colon that is affected. The surgeon will determine whether or not it is cancerous, and if it is, to what extent. And we'll go from there. Chemotherapy would be the recommended treatment if it's found to be cancerous.
...
Please pray that [my surgeon] does his best work. Pray for all of us, too. Patrick especially--he's got so many plates spinning at once...Things are happening very quickly around here.
Celine
Spinning plates, indeed. Our oldest was starting college at the local university that day. The next-oldest, who had never set foot in a brick-and-mortar school before then, began public high school just the day before. Patrick had stress at work: a new division, new boss, and new personnel that reported to him. I home-schooled our three sons aged 4, 6, and 11. Piano lessons were in full swing outside the home, as well as dance classes three nights per week in the next-over city. Two nights each week, Pat taught Chemistry to a small group of home-schooled teenagers in our basement classroom. None of us had time for a cancer diagnosis. But cancer didn't care about our schedules or our commitments.
Cancer had its own thieving agenda.
At around 10:00 PM that night, the surgeon called to discuss the scan. He seemed to be looking at the images directly; not reading a radiologist's report. He told us that he saw a mass in the sigmoid colon, and an "attachment of some sort" on the bladder. He said that it looked like the tumor was "contained", which would be a very good thing if it were true. His manner was supremely confident and he gave me great hope that surgery would eradicate the cancer.
He laughed when I told him that the hospital had scheduled me for 5:00 PM. "They are highly optimistic," he joked.
I spent the day of surgery preparing for others to step into my shoes in my absence. I ran the laundry, returned library books, and made charts of the kids' outside-the-home lessons. Bills got paid, check registers balanced, and papers filed. I knew I'd be in the hospital for at least five days and I wanted to get things in order as much as possible before I left.
As it turned out, the surgeon was correct about the hospital scheduler's optimism. The next evening the operation started at about 8:00 PM. I met briefly with the doc in the pre-op area, where he described what he expected to do. He would use a "combination approach", part laparoscopic, and part "open". He seemed energized, even given the late hour, and once again he inspired my confidence in his skill. With the help of I.V. sedatives, I was asleep before reaching the operating room.
Patrick was relegated to a large waiting area. Minutes, and then hours slowly ticked by. Little by little the waiting room emptied. Even the reception clerks left for the night. Patrick had yet to be informed of my progress. At around 11:00 PM a cleaning lady noticed him. She asked, "Are you still waiting on somebody?"
"Yes," he answered.
She let him know that there was one operating room still active. "That must be you!" she declared as she continued the work of emptying trash bins and vacuuming the floor.
Eventually the surgeon did come out to update my long-suffering husband about my condition. Patrick updated our family with the following message:
Sent: Thursday, September 6, 2013 1:25 AM
It is now 1:17 am and I am just getting home from the hospital. Celine's surgery went long because the surgeon waited for the pathologist to check the margins on the removed tissue, and he didn't like the results. So he spent another hour to remove more. He says he is confident that all of the abnormal tissue is removed with good margins.
Now we have four or five days of recovery in the hospital, and then figure out what follow-up will be necessary. This certainly is a strange new world for both of us. Thank you all so much for your prayers. They really help.
Patrick
When I opened my eyes, I was in a darkened room, all alone. My first thought was, "This can't be heaven. It hurts too much!" The only light I saw came from the digital clock on the wall. It read "12:55 AM". I winced as I realized that the sharp pain in my abdomen meant that surgery really did occur. Patrick came in and without turning on a light, wearily kissed my cheek and said "Good night." He went home to collapse in his own bed. I knew he'd be back at daybreak.
Sent: Wednesday, September 4, 2013 7:33 PM
Subject: Bad News for Celine
Hello,
I need your prayers!
I had a colonoscopy yesterday due to some bleeding problems I'd been having. I was guessing it'd just be polyps, but no. The doc found a tumor...Tomorrow I will have surgery to remove the part of my colon that is affected. The surgeon will determine whether or not it is cancerous, and if it is, to what extent. And we'll go from there. Chemotherapy would be the recommended treatment if it's found to be cancerous.
...
Please pray that [my surgeon] does his best work. Pray for all of us, too. Patrick especially--he's got so many plates spinning at once...Things are happening very quickly around here.
Celine
Spinning plates, indeed. Our oldest was starting college at the local university that day. The next-oldest, who had never set foot in a brick-and-mortar school before then, began public high school just the day before. Patrick had stress at work: a new division, new boss, and new personnel that reported to him. I home-schooled our three sons aged 4, 6, and 11. Piano lessons were in full swing outside the home, as well as dance classes three nights per week in the next-over city. Two nights each week, Pat taught Chemistry to a small group of home-schooled teenagers in our basement classroom. None of us had time for a cancer diagnosis. But cancer didn't care about our schedules or our commitments.
Cancer had its own thieving agenda.
At around 10:00 PM that night, the surgeon called to discuss the scan. He seemed to be looking at the images directly; not reading a radiologist's report. He told us that he saw a mass in the sigmoid colon, and an "attachment of some sort" on the bladder. He said that it looked like the tumor was "contained", which would be a very good thing if it were true. His manner was supremely confident and he gave me great hope that surgery would eradicate the cancer.
He laughed when I told him that the hospital had scheduled me for 5:00 PM. "They are highly optimistic," he joked.
I spent the day of surgery preparing for others to step into my shoes in my absence. I ran the laundry, returned library books, and made charts of the kids' outside-the-home lessons. Bills got paid, check registers balanced, and papers filed. I knew I'd be in the hospital for at least five days and I wanted to get things in order as much as possible before I left.
As it turned out, the surgeon was correct about the hospital scheduler's optimism. The next evening the operation started at about 8:00 PM. I met briefly with the doc in the pre-op area, where he described what he expected to do. He would use a "combination approach", part laparoscopic, and part "open". He seemed energized, even given the late hour, and once again he inspired my confidence in his skill. With the help of I.V. sedatives, I was asleep before reaching the operating room.
Patrick was relegated to a large waiting area. Minutes, and then hours slowly ticked by. Little by little the waiting room emptied. Even the reception clerks left for the night. Patrick had yet to be informed of my progress. At around 11:00 PM a cleaning lady noticed him. She asked, "Are you still waiting on somebody?"
"Yes," he answered.
She let him know that there was one operating room still active. "That must be you!" she declared as she continued the work of emptying trash bins and vacuuming the floor.
Eventually the surgeon did come out to update my long-suffering husband about my condition. Patrick updated our family with the following message:
Sent: Thursday, September 6, 2013 1:25 AM
It is now 1:17 am and I am just getting home from the hospital. Celine's surgery went long because the surgeon waited for the pathologist to check the margins on the removed tissue, and he didn't like the results. So he spent another hour to remove more. He says he is confident that all of the abnormal tissue is removed with good margins.
Now we have four or five days of recovery in the hospital, and then figure out what follow-up will be necessary. This certainly is a strange new world for both of us. Thank you all so much for your prayers. They really help.
Patrick
When I opened my eyes, I was in a darkened room, all alone. My first thought was, "This can't be heaven. It hurts too much!" The only light I saw came from the digital clock on the wall. It read "12:55 AM". I winced as I realized that the sharp pain in my abdomen meant that surgery really did occur. Patrick came in and without turning on a light, wearily kissed my cheek and said "Good night." He went home to collapse in his own bed. I knew he'd be back at daybreak.
Thursday, April 16, 2015
September 3, 2013: A Very Bad Day
Lying on a gurney, dressed in only a hospital gown, covered by a sheet and with an IV in the back of my hand, I gaze out a tiny rectangular window near the ceiling of the curtained cubicle where I wait to be wheeled back for my first-ever colonoscopy. I am 47. "Nice that I have one real wall," I think to myself. The facility has maybe twenty curtained "rooms", each just big enough for a gurney and a chair. Only thin sheets, "privacy curtains", suspended from hooks set in a maze of tracks running across the ceiling separate the spaces. My husband holds my right hand as I stare up through the window at the clear blue sky outside.
In the silence of my thoughts, I thank God for what I know could be my last moment of blissful ignorance.
I fix the sky's particular shade of blue in my mind. I try to absorb its serenity. I think back to what brought me here: the panicked look on my husband's face, the pressure of his request to "call the doctor", my reluctance, and his insistence that I must. "If it's colon cancer, it can be cured if it's caught in time," he had urged just a couple of days before.
"Cancer?" I thought then. "Cancer?" It couldn't be. How could it be cancer? I have none of the risk factors. Not one! I saw my G.P. soon after, but he could not rule out cancer.
"Time for a scope-a-roonie for you," he said, and gave me a number to call for an appointment.
I couldn't help but laugh at the ridiculousness ("scope-a-roonie?!"). The whole situation was ridiculous! It couldn't be cancer. Still, the nurse's comment as I was leaving, "I hope it all goes well for you," felt ominous.
The next day I called the number and got an appointment with a gastroenterologist. My G.P. called me that same afternoon. "Did you make an appointment?"
"I did!" I said, triumphantly.
"When will it be?" he asked.
I gave him the date, which was about six weeks away. Next came a string of utterances that started with, "No, no, no…" that date was "not soon enough", he declared. "You need to be seen right away. I will call them and get back to you."
He did. My new appointment would be the following Tuesday. Monday, I'm sure, would have been his first choice, but that Monday happened to be Labor Day, 2013.
"Ready to go?" the smiling nurse asked, interrupting my thoughts. Two scrubs-wearing individuals appeared and wheeled me and the gurney to the procedure room. Patrick was left in the curtained "room" to wait.
What I remember next is that when I woke, a man was holding a photograph of--something--too close to my face. I couldn't make sense of it. I was aware that my husband was sitting in a chair next to the gurney. "Mrs. Ryan! Mrs. Ryan!" he spoke quickly, "You have a tumor. It is most-likely cancer." He waved the photograph which I then understood to be a picture of the inside of my colon. "You have to go, Mrs. Ryan. You have to go now. You have to see the surgeon. We'll send your paperwork." The man was the gastroenterologist, dark-haired, and with strange, tattooed eyebrows. I didn't like the news he gave me, or the way he delivered it. Photograph or not, this information was too much to take in.
My husband explained later that I had been returned to the waiting area only a couple of minutes after having left it. I, however, had no sense for how much time had elapsed thanks to the twilight anesthesia I had been given. The doctor, Patrick told me, was unable to complete the exam due to the size of the tumor.
"Is this really happening?" I asked.
"It's really happening," Patrick answered somberly. "C'mon, we have to go."
I didn't want to go. I wanted to stay right there, in that spot and consider what this information meant--to ask questions--but there was no time.
I asked the nurse if they would be able to use the same I.V. for surgery. She said that they could. She closed it off, covered it up, and wrote some info on the dressing. I found my clothes, quickly put them on, and rushed out the door and into the car. Patrick drove us literally across the street to the surgeon's office.
I no more than stepped up to the reception area when the lady behind the sliding window asked, "Are you Mrs. Ryan?" She handed me a clipboard and told me they were expecting me. The waiting room was packed. Someone stood up so that I could sit down to fill out the paperwork. I was in a daze.
A nurse called my name almost before I could finish filling in my address on the forms. We met the surgeon in an office area. He ordered a CT scan for the next day, and told me that he would do surgery the day after that, a Thursday. He would tack my case onto the end of his schedule. He thought that surgery might begin around 8 PM. I was to go have lunch (I had been fasting many hours by then), and expect a call from the hospital with further instructions.
We left the surgeon's office and Patrick led me to the elevator. There were two or three people riding with us while he took a phone call. It was a friend from work. I listened, almost unbelieving, to the events of the day as re-told by my husband. When Patrick delivered the dire news, "They think it's cancer," into the receiver, I felt that all eyes were now on me. Having the I.V. still in my hand left no question who he was talking about.
When the elevator stopped on the main level, I turned to exit the building, but was stopped by a woman who had overheard the conversation on the ride down. "I'm sorry," she started, "I couldn't help but hear. Can I ask you your name?"
"Oh, sure. It's 'Celine'. Are you going to pray for me?" I cautiously asked.
"Yes," she assured me, nodding.
"I think I'm going to need them," I replied. I thanked her, and we went our separate ways. "This really is serious," I thought, "if someone I don't even know is offering me her prayers without even being asked."
In the silence of my thoughts, I thank God for what I know could be my last moment of blissful ignorance.
I fix the sky's particular shade of blue in my mind. I try to absorb its serenity. I think back to what brought me here: the panicked look on my husband's face, the pressure of his request to "call the doctor", my reluctance, and his insistence that I must. "If it's colon cancer, it can be cured if it's caught in time," he had urged just a couple of days before.
"Cancer?" I thought then. "Cancer?" It couldn't be. How could it be cancer? I have none of the risk factors. Not one! I saw my G.P. soon after, but he could not rule out cancer.
"Time for a scope-a-roonie for you," he said, and gave me a number to call for an appointment.
I couldn't help but laugh at the ridiculousness ("scope-a-roonie?!"). The whole situation was ridiculous! It couldn't be cancer. Still, the nurse's comment as I was leaving, "I hope it all goes well for you," felt ominous.
The next day I called the number and got an appointment with a gastroenterologist. My G.P. called me that same afternoon. "Did you make an appointment?"
"I did!" I said, triumphantly.
"When will it be?" he asked.
I gave him the date, which was about six weeks away. Next came a string of utterances that started with, "No, no, no…" that date was "not soon enough", he declared. "You need to be seen right away. I will call them and get back to you."
He did. My new appointment would be the following Tuesday. Monday, I'm sure, would have been his first choice, but that Monday happened to be Labor Day, 2013.
"Ready to go?" the smiling nurse asked, interrupting my thoughts. Two scrubs-wearing individuals appeared and wheeled me and the gurney to the procedure room. Patrick was left in the curtained "room" to wait.
What I remember next is that when I woke, a man was holding a photograph of--something--too close to my face. I couldn't make sense of it. I was aware that my husband was sitting in a chair next to the gurney. "Mrs. Ryan! Mrs. Ryan!" he spoke quickly, "You have a tumor. It is most-likely cancer." He waved the photograph which I then understood to be a picture of the inside of my colon. "You have to go, Mrs. Ryan. You have to go now. You have to see the surgeon. We'll send your paperwork." The man was the gastroenterologist, dark-haired, and with strange, tattooed eyebrows. I didn't like the news he gave me, or the way he delivered it. Photograph or not, this information was too much to take in.
My husband explained later that I had been returned to the waiting area only a couple of minutes after having left it. I, however, had no sense for how much time had elapsed thanks to the twilight anesthesia I had been given. The doctor, Patrick told me, was unable to complete the exam due to the size of the tumor.
"Is this really happening?" I asked.
"It's really happening," Patrick answered somberly. "C'mon, we have to go."
I didn't want to go. I wanted to stay right there, in that spot and consider what this information meant--to ask questions--but there was no time.
I asked the nurse if they would be able to use the same I.V. for surgery. She said that they could. She closed it off, covered it up, and wrote some info on the dressing. I found my clothes, quickly put them on, and rushed out the door and into the car. Patrick drove us literally across the street to the surgeon's office.
I no more than stepped up to the reception area when the lady behind the sliding window asked, "Are you Mrs. Ryan?" She handed me a clipboard and told me they were expecting me. The waiting room was packed. Someone stood up so that I could sit down to fill out the paperwork. I was in a daze.
A nurse called my name almost before I could finish filling in my address on the forms. We met the surgeon in an office area. He ordered a CT scan for the next day, and told me that he would do surgery the day after that, a Thursday. He would tack my case onto the end of his schedule. He thought that surgery might begin around 8 PM. I was to go have lunch (I had been fasting many hours by then), and expect a call from the hospital with further instructions.
We left the surgeon's office and Patrick led me to the elevator. There were two or three people riding with us while he took a phone call. It was a friend from work. I listened, almost unbelieving, to the events of the day as re-told by my husband. When Patrick delivered the dire news, "They think it's cancer," into the receiver, I felt that all eyes were now on me. Having the I.V. still in my hand left no question who he was talking about.
When the elevator stopped on the main level, I turned to exit the building, but was stopped by a woman who had overheard the conversation on the ride down. "I'm sorry," she started, "I couldn't help but hear. Can I ask you your name?"
"Oh, sure. It's 'Celine'. Are you going to pray for me?" I cautiously asked.
"Yes," she assured me, nodding.
"I think I'm going to need them," I replied. I thanked her, and we went our separate ways. "This really is serious," I thought, "if someone I don't even know is offering me her prayers without even being asked."
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