I got some pretty dreadful news just before treatment number twelve. My doctor wanted me to have a thirteenth treatment. I was incredibly disappointed. The goal I'd been striving for for so long had been moved! Emotionally, I didn't know how I could face another treatment. It felt like a cruel joke.
Writing it out helped me to deal with the blow.
Sent: Monday, Mar 3, 2014 at 7:18 AM
Greetings!
I so wish I could report that today is my last chemo day. It was supposed to be! I found out on Friday that it is not. [My oncologist] wants me to have a thirteenth treatment, to make up for the skipped oxaliplatin in treatment #3. "Twelve of oxaliplatin is the standard of care, even if there are some skips along the way," she said. So. Thirteen treatments for me. If it goes as planned, my last treatment will be on St. Patrick's Day.
Livers...wow. Those things are temperamental! Or maybe it's just mine. Also, my blood is not good. Not good! What to do? Last week, I got three infusions of saline, three neupogen injections, and two infusions of iron. All this to get me ready for today's treatment. The hydration seems to be the reason my liver enzymes went down (yay!) according to last Wednesday's lab report. Doc said to "Keep up with the apples though--you never know."
Every two weeks I was asked the same exhaustive list of questions. "Any pain? Any fevers? Mouth sores? ...and on and on. When the nurse got to the part about "numbness or tingling in hands or feet", I answered an enthusiastic, "Yes!"
She peered at me sideways over her clipboard, then asked, "Is it more than a couple times a day?"
Me: It's almost constant now.
Nurse: Are you taking your blah-blah-blah (drug name)?
Me: What? No. What is that?
Nurse: It's a drug that will help to stop neuropathy
Me: [blank stare]
Nurse: You filled the prescription.
Me: I did? Oh. OHHHHHhhhh. [light bulb] Is that the stuff that had "May cause suicidal thoughts" as one of the side-effects?
Nurse: [nods]
Me: Yeah, I threw that away.
Nurse: You threw it away?
Me: I didn't want to risk it. Cancer is enough, who needs suicidal thoughts on top of that? I'm almost done with chemo. Does it even matter now?
Nurse: The chemo drugs will stay in your system for up to four months after the last treatment. Your neuropathy could be permanent. This drug can help. I'm going to see if you have any refills, and then you take it, OK?
Me: Um. OK? I guess. I'll take it.
The drug referred to above was gabapentin. I tried it for a few days, but it made me incredibly drowsy. Driving while on that was out of the question. I had to stop taking it; it was making my ability to function worse, not better. Into the trash it went.
After sending off the blast-o-gram to update my friends and family, Patrick and I left the house for treatment twelve at the clinic.
Ten days after that, we received the biggest shock yet. My oncologist would utter the words, "I think you might be cured." We would find out later that the miserable cancer had tricked us all, but at the time we felt like we owned the moon.
Monday, May 18, 2015
Saturday, May 16, 2015
The Flurry That Was Treatment #11
Toward the end of chemotherapy things got really hairy at home. My liver was a mess, and so extra clinic visits for "maintenance" were shoe-horned into already-packed weeks. My doc ordered several hydration procedures, hoping to get my uncooperative liver to detox in time for treatment eleven. This meant 2 to 3 hours of infusions, not to mention the drive, three times per week. I did not dare attempt bringing the boys to these appointments (we home-school, so they're with me all day, every day). There aren't enough Pokemon cards and milkshakes in the world to make that scenario work.
Thankfully, our friends rallied, caring for the boys when I wasn't able to. Also great: the boys loved playing at other people's houses. Had any one of them protested about leaving me, my heart probably would've broken on the spot. I am (we are) blessed with amazing friends who made accepting their help easy.
After witnessing what could happen during an infusion, Patrick was even more determined to not miss a chemo appointment. We showed up on Monday morning, but despite the hydration sessions, my liver enzymes were too high to proceed with treatment eleven. A nurse drew my blood and sent us home. Pending the results of that blood work, I'd be asked to come back the next day.
The next day I updated friends and family from the infusion room.
Sent: February 18, 2014 2:13 PM
After much discussion, [my oncologist] is going ahead with #11 today, including oxaliplatin! She initially wanted to skip the OX altogether today, but ultimately decided to forge ahead. Many more trips for hydration will be needed...
Further complicating our lives at this time was the record-breaking snowfall. The area was in the midst of one of its snowiest winters since 1880. Getting to appointments was anything but easy, but everyone we knew was pulling for us. We continually offered prayers of thanksgiving for their presence in our lives.
Thank You again, for your prayers, acts of kindness and the other many ways you help. It is very humbling to be so needy, but we are very grateful for all of you. This journey is not one that I would wish on anyone, but knowing you're all "there" for us makes it bearable.
What a blessing it was to know that we were not alone.
Thankfully, our friends rallied, caring for the boys when I wasn't able to. Also great: the boys loved playing at other people's houses. Had any one of them protested about leaving me, my heart probably would've broken on the spot. I am (we are) blessed with amazing friends who made accepting their help easy.
After witnessing what could happen during an infusion, Patrick was even more determined to not miss a chemo appointment. We showed up on Monday morning, but despite the hydration sessions, my liver enzymes were too high to proceed with treatment eleven. A nurse drew my blood and sent us home. Pending the results of that blood work, I'd be asked to come back the next day.
The next day I updated friends and family from the infusion room.
Sent: February 18, 2014 2:13 PM
After much discussion, [my oncologist] is going ahead with #11 today, including oxaliplatin! She initially wanted to skip the OX altogether today, but ultimately decided to forge ahead. Many more trips for hydration will be needed...
Further complicating our lives at this time was the record-breaking snowfall. The area was in the midst of one of its snowiest winters since 1880. Getting to appointments was anything but easy, but everyone we knew was pulling for us. We continually offered prayers of thanksgiving for their presence in our lives.
Thank You again, for your prayers, acts of kindness and the other many ways you help. It is very humbling to be so needy, but we are very grateful for all of you. This journey is not one that I would wish on anyone, but knowing you're all "there" for us makes it bearable.
What a blessing it was to know that we were not alone.
Friday, May 15, 2015
Chemotherapy Hates Me
On Thursday of treatment week ten, I had an annual physical that included a fasting blood draw. By the time the dinner hour rolled around that evening, I had been fasting for over fifteen hours. Nausea combined with an empty stomach had me feeling "off". I felt weak and clammy. Dinner was OK but the aftermath was horrific. I seriously considered sleeping on the bathroom floor.
The next morning, a Friday, I was due at the clinic for a neupogen injection. Once there, I enjoined my boys to "behave...well", intuiting the need to be specific. I was ushered to the back and seated for a blood pressure check. The nurse stood off a bit, silently taking stock of me for several uncomfortable moments. Warily, she offered the assessment, "You look bedraggled."
"Um...yes. I am bedraggled. That is a good word for it," I muttered. I then relayed the prior evening's development, whereupon both the nurse and the doctor bombarded me with advice, admonitions, and warnings. I wasn't prepared for them to treat diarrhea as a Big Hairy Deal, but they clearly did. Or maybe I looked worse than I thought.
The nurse exclaimed, "Immodium! You need immodium!" and hurried off to retrieve it.
"Food! You need food and drink!" recommended the doc, as she vanished to gather pretzels and water from the staff lunchroom. She then promptly offered a prescription for potassium, in the form of a pill the size of my thumb. Warnings of a possible hospital stay were given, followed by explanations of blood chemistry and worrisome signs to watch for. I was to go home, drink as much as I possibly could, and rest, rest, rest.
I managed to avoid a hospital stay, and did a lot of resting over the weekend.
New side-effects appeared. What felt like a sustained electric shock moved through my feet. It seemed to start at the ankles, and then it swooshed through both feet at the same time, all the way to my toes. It didn't hurt, and it lasted only a second, but it took me off guard. This happened maybe twenty times each day. Neuropathy in my feet had begun. It would get worse.
My fingers were affected by neuropathy too, from the fingertips back just beyond the first knuckle. It was painful to write, and impossible to button things. Tying shoestrings was difficult and frustrating. Aside from being painful, it felt like my fingers had expanded; they seemed to get in the way of themselves, like I was wearing invisible gloves. I dropped stuff a lot. I was afraid to use knives.
Fortunately, I could still type, despite neuropathy. I updated friends and family about one of the nurse's suggestions for de-toxing my liver between treatments. She recommended that I drink apple cider vinegar, the murkier, the better:
I was to mix of 2 TB of apple-cider vinegar into 8 oz. of water, then drink it down once or twice daily. I added a liberal amount of unauthorized honey to the glass as well.
I would like to tell you that the elixir is nothing short of a delight, however that would be a big, fat lie. What it is actually, is a method for disintegrating the back of your throat. Given enough time, I'm pretty sure it would strip all the enamel off of your teeth, too. In a word: Yuck.
When I next met the nurse, just two days later, I reported that my entire biological system had voted "No" to apple cider vinegar. I tried it two or three times, but instead of getting easier, drinking the stuff got even more difficult. She then suggested that I drink 4 oz. of minimally processed apple juice every morning instead. This I did, happily, almost every day.
Only two treatments were left. I couldn't feel my fingers, my feet were wigging out, my liver was angry and my hair was getting thinner and thinner. I had no energy, and my brain was...different. Would I make it to number twelve?
The next morning, a Friday, I was due at the clinic for a neupogen injection. Once there, I enjoined my boys to "behave...well", intuiting the need to be specific. I was ushered to the back and seated for a blood pressure check. The nurse stood off a bit, silently taking stock of me for several uncomfortable moments. Warily, she offered the assessment, "You look bedraggled."
"Um...yes. I am bedraggled. That is a good word for it," I muttered. I then relayed the prior evening's development, whereupon both the nurse and the doctor bombarded me with advice, admonitions, and warnings. I wasn't prepared for them to treat diarrhea as a Big Hairy Deal, but they clearly did. Or maybe I looked worse than I thought.
The nurse exclaimed, "Immodium! You need immodium!" and hurried off to retrieve it.
"Food! You need food and drink!" recommended the doc, as she vanished to gather pretzels and water from the staff lunchroom. She then promptly offered a prescription for potassium, in the form of a pill the size of my thumb. Warnings of a possible hospital stay were given, followed by explanations of blood chemistry and worrisome signs to watch for. I was to go home, drink as much as I possibly could, and rest, rest, rest.
I managed to avoid a hospital stay, and did a lot of resting over the weekend.
New side-effects appeared. What felt like a sustained electric shock moved through my feet. It seemed to start at the ankles, and then it swooshed through both feet at the same time, all the way to my toes. It didn't hurt, and it lasted only a second, but it took me off guard. This happened maybe twenty times each day. Neuropathy in my feet had begun. It would get worse.
My fingers were affected by neuropathy too, from the fingertips back just beyond the first knuckle. It was painful to write, and impossible to button things. Tying shoestrings was difficult and frustrating. Aside from being painful, it felt like my fingers had expanded; they seemed to get in the way of themselves, like I was wearing invisible gloves. I dropped stuff a lot. I was afraid to use knives.
Fortunately, I could still type, despite neuropathy. I updated friends and family about one of the nurse's suggestions for de-toxing my liver between treatments. She recommended that I drink apple cider vinegar, the murkier, the better:
I was to mix of 2 TB of apple-cider vinegar into 8 oz. of water, then drink it down once or twice daily. I added a liberal amount of unauthorized honey to the glass as well.
I would like to tell you that the elixir is nothing short of a delight, however that would be a big, fat lie. What it is actually, is a method for disintegrating the back of your throat. Given enough time, I'm pretty sure it would strip all the enamel off of your teeth, too. In a word: Yuck.
When I next met the nurse, just two days later, I reported that my entire biological system had voted "No" to apple cider vinegar. I tried it two or three times, but instead of getting easier, drinking the stuff got even more difficult. She then suggested that I drink 4 oz. of minimally processed apple juice every morning instead. This I did, happily, almost every day.
Only two treatments were left. I couldn't feel my fingers, my feet were wigging out, my liver was angry and my hair was getting thinner and thinner. I had no energy, and my brain was...different. Would I make it to number twelve?
Thursday, May 14, 2015
What Not To Say
A couple of days after treatment number ten I had an appointment for a routine physical with my general practitioner. Given the almost-daily attention that my health was getting from the staff at the oncology clinic, it seemed superfluous to be getting an annual physical. Nonetheless, the insurance company mandated it, and I wanted very much to keep the bill-payers happy.
The physical was mostly uneventful. The doc disclosed that from the medical reports he had received from oncology, it appeared that I was doing "remarkably well". Then to my utter shock he revealed that, "Back in September, [he] wasn't sure [I'd] pull through, given the stage of disease."
I am no doctor, but it seems obvious to me that when you are minding the health of a body that is not your own, care must be taken to not cross that sometimes hard-to-see line between thoughts that are appropriate to say out loud, and those which should remain unspoken at all cost.
I quickly decided that assuming the best of intentions would be wisest. I don't remember how I responded, or even if I responded. I do remember thinking, "Doctors are people, too. I am sure he didn't mean it the way it sounded. He probably means that he is encouraged by my progress, when a cure is statistically unlikely..."
Just then I heard the distinct voice of my aunt, who herself is a stage IV cancer (and chemotherapy) survivor of over twenty years. She had been among the first to call soon after my surgery five months earlier. "You are not a number!" she wisely counseled.
I am not a number. I'm a person in need of a lot of help to get healthy.
The physical was mostly uneventful. The doc disclosed that from the medical reports he had received from oncology, it appeared that I was doing "remarkably well". Then to my utter shock he revealed that, "Back in September, [he] wasn't sure [I'd] pull through, given the stage of disease."
I am no doctor, but it seems obvious to me that when you are minding the health of a body that is not your own, care must be taken to not cross that sometimes hard-to-see line between thoughts that are appropriate to say out loud, and those which should remain unspoken at all cost.
I quickly decided that assuming the best of intentions would be wisest. I don't remember how I responded, or even if I responded. I do remember thinking, "Doctors are people, too. I am sure he didn't mean it the way it sounded. He probably means that he is encouraged by my progress, when a cure is statistically unlikely..."
Just then I heard the distinct voice of my aunt, who herself is a stage IV cancer (and chemotherapy) survivor of over twenty years. She had been among the first to call soon after my surgery five months earlier. "You are not a number!" she wisely counseled.
I am not a number. I'm a person in need of a lot of help to get healthy.
Wednesday, May 13, 2015
Treatments 9 and 10
Treatment nine was followed by a lot of pain. I've blocked most of that day out. (Blocking things out is my Super Power.) I remember that I left my bed in the dark of night, retreating to the recliner in the living room, where I continued to suffer stabbing pains. My coping skills were depleted. I could only sit there in the dark and pray, with tears streaming.
I believe in redemptive suffering, and so I offered the pain to Jesus through Mary, trusting that she would present my anguish to her Son in a more useful way than I was able to--an exercise that St. Louis de Montfort, St. John Paul II, and many other saints practiced and recommended in their lifetimes. For as long as I could, I offered prayers for others, then finally I begged God for relief.
I slept.
If chemo was going to be like this from now on, I was ready to call it quits. "Nine treatments might be enough," I thought. I had read that some studies showed that eight rounds of FOLFOX were shown to be as effective as the twelve I was supposed to receive. Some patients stopped at only six!
Thankfully, the day went infinitely better than the night had, and my resolve to finish the series of treatments returned.
Blood work at this time showed that my poor, over-worked liver needed a break. During the "recovery" week, I received three neupogen injections to boost my white blood cell count, but these had no benefit to my liver. That Thursday, my oncologist deemed my liver "too toxic" to proceed with treatment ten as scheduled for the following Monday. Instead, she proposed to split the treatment over two days. Fluorouracil alone would be given on Monday. Oxaliplatin would follow on Tuesday, but only if newer blood labs showed some liver recovery.
On Monday I arrived for FOLFOX minus oxaliplatin. That night, my doctor phoned to report that the liver enzymes were "not trending upward", which meant that my liver was holding on. I was instructed to show up at the clinic again the following morning for Part 2 of the infusion.
Tuesday came and I arrived to find the treatment room filled almost to capacity. My usual spot, which had a view of the "cocktail bar" was available (by this time I was avoiding the windows, because my eyes were so sensitive to light) and so there I sat. After an hour, all of the patients were plugged in to their chemo meds. Most were napping. Patrick and I immersed ourselves online--him doing work; me surfing with no real purpose.
Suddenly, Patrick said, "I think that lady needs help!" I turned to my left to see a woman about my age in obvious distress a couple of chairs down from mine. Her eyes were wild with panic; her body stiff. She didn't make a sound. Nurses snapped into action. The doctor was instantly at her side. All circled the recliner. The oncologist issued orders with calm authority and they were quietly, but urgently carried out.
Not wanting to stare at a person in such a vulnerable state, I scanned the room instead. Some patients held magazines in front of their faces, not to read, but to shield their eyes. Others stared at the alarming scene. Staff members not immediately involved stood frozen at attention, ready for direction. I bowed my head and prayed. Few times in my life have I felt so helpless.
In time the woman's stiff body relaxed. She continued with her treatment while the room breathed a collective sigh of relief.
More than ever, I wanted to run screaming away and never set foot in the treatment room again. That didn't happen though. I was so near to the final chemo appointment, and I needed the satisfaction that would come from knowing that I had done my part to stop the disease. There was no way I was going to quit. If my liver could stand another round, then I'd be back in two weeks for number eleven.
I believe in redemptive suffering, and so I offered the pain to Jesus through Mary, trusting that she would present my anguish to her Son in a more useful way than I was able to--an exercise that St. Louis de Montfort, St. John Paul II, and many other saints practiced and recommended in their lifetimes. For as long as I could, I offered prayers for others, then finally I begged God for relief.
I slept.
If chemo was going to be like this from now on, I was ready to call it quits. "Nine treatments might be enough," I thought. I had read that some studies showed that eight rounds of FOLFOX were shown to be as effective as the twelve I was supposed to receive. Some patients stopped at only six!
Thankfully, the day went infinitely better than the night had, and my resolve to finish the series of treatments returned.
Blood work at this time showed that my poor, over-worked liver needed a break. During the "recovery" week, I received three neupogen injections to boost my white blood cell count, but these had no benefit to my liver. That Thursday, my oncologist deemed my liver "too toxic" to proceed with treatment ten as scheduled for the following Monday. Instead, she proposed to split the treatment over two days. Fluorouracil alone would be given on Monday. Oxaliplatin would follow on Tuesday, but only if newer blood labs showed some liver recovery.
On Monday I arrived for FOLFOX minus oxaliplatin. That night, my doctor phoned to report that the liver enzymes were "not trending upward", which meant that my liver was holding on. I was instructed to show up at the clinic again the following morning for Part 2 of the infusion.
Tuesday came and I arrived to find the treatment room filled almost to capacity. My usual spot, which had a view of the "cocktail bar" was available (by this time I was avoiding the windows, because my eyes were so sensitive to light) and so there I sat. After an hour, all of the patients were plugged in to their chemo meds. Most were napping. Patrick and I immersed ourselves online--him doing work; me surfing with no real purpose.
Suddenly, Patrick said, "I think that lady needs help!" I turned to my left to see a woman about my age in obvious distress a couple of chairs down from mine. Her eyes were wild with panic; her body stiff. She didn't make a sound. Nurses snapped into action. The doctor was instantly at her side. All circled the recliner. The oncologist issued orders with calm authority and they were quietly, but urgently carried out.
Not wanting to stare at a person in such a vulnerable state, I scanned the room instead. Some patients held magazines in front of their faces, not to read, but to shield their eyes. Others stared at the alarming scene. Staff members not immediately involved stood frozen at attention, ready for direction. I bowed my head and prayed. Few times in my life have I felt so helpless.
In time the woman's stiff body relaxed. She continued with her treatment while the room breathed a collective sigh of relief.
More than ever, I wanted to run screaming away and never set foot in the treatment room again. That didn't happen though. I was so near to the final chemo appointment, and I needed the satisfaction that would come from knowing that I had done my part to stop the disease. There was no way I was going to quit. If my liver could stand another round, then I'd be back in two weeks for number eleven.
Tuesday, May 12, 2015
Treatments 7 and 8: Christmastime
It was the Christmas season, and I had completed treatment numbers
seven and eight. Most other years would've seen the seven of us piling
into the mini-van for several days of road-trips to visit friends and
family across the state, but not this year.
Chemo pushed forward, regardless of the holidays. I was on a two-week cycle, and my oncologist was committed to ensuring that I did not deviate from it unless it was medically indicated. Since there was no predicting if I'd have any "good days" between treatments, we decided to stay at home.
Christmas fell on a Wednesday that year, and because it was a treatment week for me, I was attached to the chemo pump. I worshiped at morning Mass regardless, but it was tough to focus. Surrounded by fellow parishioners, the pump's intermittent chattering sounded louder to my ears, though I'm sure its volume hadn't changed.
With the clinic closed due to Christmas, Patrick accepted the responsibility of removing my harpoon and pump himself. Weeks earlier, in anticipation of "pump off" day falling on Christmas, my oncologist had suggested I go to the E.R. for detachment. We didn't like that idea, so Patrick campaigned for the job. Granting him her permission, the doctor emphasized that it would be, "For just this one time."
Patrick is a keen observer and not the least bit squeamish. I was sure he would follow the protocol to the letter and that I would escape any harmful consequences.
Sent: Monday, January 13, 2014 2:35 PM
We spent Christmas Day at home, where Patrick repeated our Thanksgiving menu (minus the flames on the sweet potatoes, much to our four-year-old's disappointment) and the kids spent a good long time opening presents...
...near lunchtime the pump's alarm sounded to let us know that all the drugs were delivered and it was time for removal. I'm happy to say that Patrick did an excellent job of remembering the 247 steps required to remove the pump, and no infection ensued. Success! Also, we saved an E.R. bill. Merry Christmas, indeed.
Here's something I learned: Not only does the pump have a "Start/Stop" button; it also has an "On/Off" button. Ha! No wonder I could never get the thing to stop beeping by pressing "Stop". However when "On/Off" is pressed, then the thing shuts off. Brilliant. What can I say? I avoid looking at that thing as much as possible. ...and anyway, two separate buttons is overkill if you ask me.
By now I was starting to really dread "chemo Mondays". Most Sunday afternoons were spent trying to beat my husband at cards; spades specifically. Playing cards until I couldn't keep my eyes open was a great way to avoid thinking about the next day's chemo infusion.
My blood counts were getting worse. Even after three neupogen injections, my white blood cell count was too low for treatment number eight. Additional steroids were administered on the morning of treatment, and the count was boosted. Number eight would proceed on schedule.
By now I knew to expect the creepy, sickening feeling of benadryl going into the port. The nurse injected it, and three seconds later my vision went blurry and my eyes rolled back. Remaining alert was not an option. No wonder chemo patients receive their infusions in recliners! It was "lights out", but only temporarily. After a few minutes I was able to read or hold a conversation again. It was disconcerting though because I knew that benadryl hadn't always had that affect on me. The drugs weren't different; it was my own body that was changing. Bouncing back got more and more difficult.
Results from yet another CEA draw offered more hope that chemo was doing its job. Enduring the final four treatments would be well worth the pain and nausea, if it meant a cure.
Doc drew more blood for another CEA test. Still low! Wooooo!!! She said it is 0.8 now. Great, great news.
Looking SO forward to being done with chemo! March 3 is scheduled as the last treatment. There will be maintenance drugs, and probably other infusions, too, but the regiment I'm on now will be over, and I hope that my hands/fingers will be back to normal soon after, not to mention my brain, and my energy, and...and...everything! Can't wait!
The above excerpt was written over a year ago. I was filled with enthusiasm and hope. Chemo was stealing my health even as it worked to restore it, but I would win. Cancer would lose. I just needed for chemo to not kill me before cancer did. Once I recovered from chemo, life would be back to normal. Oh, how I loved the thought of that!
Chemo pushed forward, regardless of the holidays. I was on a two-week cycle, and my oncologist was committed to ensuring that I did not deviate from it unless it was medically indicated. Since there was no predicting if I'd have any "good days" between treatments, we decided to stay at home.
Christmas fell on a Wednesday that year, and because it was a treatment week for me, I was attached to the chemo pump. I worshiped at morning Mass regardless, but it was tough to focus. Surrounded by fellow parishioners, the pump's intermittent chattering sounded louder to my ears, though I'm sure its volume hadn't changed.
With the clinic closed due to Christmas, Patrick accepted the responsibility of removing my harpoon and pump himself. Weeks earlier, in anticipation of "pump off" day falling on Christmas, my oncologist had suggested I go to the E.R. for detachment. We didn't like that idea, so Patrick campaigned for the job. Granting him her permission, the doctor emphasized that it would be, "For just this one time."
Patrick is a keen observer and not the least bit squeamish. I was sure he would follow the protocol to the letter and that I would escape any harmful consequences.
Sent: Monday, January 13, 2014 2:35 PM
We spent Christmas Day at home, where Patrick repeated our Thanksgiving menu (minus the flames on the sweet potatoes, much to our four-year-old's disappointment) and the kids spent a good long time opening presents...
...near lunchtime the pump's alarm sounded to let us know that all the drugs were delivered and it was time for removal. I'm happy to say that Patrick did an excellent job of remembering the 247 steps required to remove the pump, and no infection ensued. Success! Also, we saved an E.R. bill. Merry Christmas, indeed.
Here's something I learned: Not only does the pump have a "Start/Stop" button; it also has an "On/Off" button. Ha! No wonder I could never get the thing to stop beeping by pressing "Stop". However when "On/Off" is pressed, then the thing shuts off. Brilliant. What can I say? I avoid looking at that thing as much as possible. ...and anyway, two separate buttons is overkill if you ask me.
By now I was starting to really dread "chemo Mondays". Most Sunday afternoons were spent trying to beat my husband at cards; spades specifically. Playing cards until I couldn't keep my eyes open was a great way to avoid thinking about the next day's chemo infusion.
My blood counts were getting worse. Even after three neupogen injections, my white blood cell count was too low for treatment number eight. Additional steroids were administered on the morning of treatment, and the count was boosted. Number eight would proceed on schedule.
By now I knew to expect the creepy, sickening feeling of benadryl going into the port. The nurse injected it, and three seconds later my vision went blurry and my eyes rolled back. Remaining alert was not an option. No wonder chemo patients receive their infusions in recliners! It was "lights out", but only temporarily. After a few minutes I was able to read or hold a conversation again. It was disconcerting though because I knew that benadryl hadn't always had that affect on me. The drugs weren't different; it was my own body that was changing. Bouncing back got more and more difficult.
Results from yet another CEA draw offered more hope that chemo was doing its job. Enduring the final four treatments would be well worth the pain and nausea, if it meant a cure.
Doc drew more blood for another CEA test. Still low! Wooooo!!! She said it is 0.8 now. Great, great news.
Looking SO forward to being done with chemo! March 3 is scheduled as the last treatment. There will be maintenance drugs, and probably other infusions, too, but the regiment I'm on now will be over, and I hope that my hands/fingers will be back to normal soon after, not to mention my brain, and my energy, and...and...everything! Can't wait!
The above excerpt was written over a year ago. I was filled with enthusiasm and hope. Chemo was stealing my health even as it worked to restore it, but I would win. Cancer would lose. I just needed for chemo to not kill me before cancer did. Once I recovered from chemo, life would be back to normal. Oh, how I loved the thought of that!
Monday, May 11, 2015
Treatment #6
After treatment six, I got some encouraging news. My oncologist informed me that my blood-tests showed that the level of CEA (carcinoembryonic antigen) in my system was going down. CEA is produced by colon tumors. A steadily dropping CEA level was a good sign.
We would get worse news in about a year, but at the time it seemed that a cure was possible for me. I wrote to friends and family:
Sent: December 18, 2013 3:35 PM
Greetings, Friends-
I have good news! My oncologist has been tracking a particular protein in my blood that is associated with cancer. Last week, she cheerfully reported that the values are dropping significantly. This protein (CEA) is used as a tumor marker, and the fact that the value is going down is an indication that the cancer probably hasn't spread. Yay, hooray!!! It dropped from a high of 19, to its current value, 0.9. Woo! Stay low, CEA. Stay low.
...
Also happened: Patrick got trained on how to safely remove the harpoon and pump from his dear wife. The pump will need to be removed late in the morning on Christmas day. I laughed when the nurse explained to him about containment. "Remember," she cautioned, "even though we're dumping this directly into your wife's bloodstream, this stuff is poison to you and me."
Um, Hello? It's poison to me, too. Just ask my liver. But! It's poison to cancer, too.
My head knew that chemo was my best chance at a cure, but I couldn't keep from thinking, "There's got to be a better way."
We would get worse news in about a year, but at the time it seemed that a cure was possible for me. I wrote to friends and family:
Sent: December 18, 2013 3:35 PM
Greetings, Friends-
I have good news! My oncologist has been tracking a particular protein in my blood that is associated with cancer. Last week, she cheerfully reported that the values are dropping significantly. This protein (CEA) is used as a tumor marker, and the fact that the value is going down is an indication that the cancer probably hasn't spread. Yay, hooray!!! It dropped from a high of 19, to its current value, 0.9. Woo! Stay low, CEA. Stay low.
...
Also happened: Patrick got trained on how to safely remove the harpoon and pump from his dear wife. The pump will need to be removed late in the morning on Christmas day. I laughed when the nurse explained to him about containment. "Remember," she cautioned, "even though we're dumping this directly into your wife's bloodstream, this stuff is poison to you and me."
Um, Hello? It's poison to me, too. Just ask my liver. But! It's poison to cancer, too.
My head knew that chemo was my best chance at a cure, but I couldn't keep from thinking, "There's got to be a better way."
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