for now we see dimly, then all shall be made plain...
Wowsers, it's been a while since I've sat myself down without babe in arms (she's sleeping in Timothy's arms over on the far side of our living room - we are both quietly working away on our own things, yet remembering to have time together, the two of us, the four of us, whatever that means. In the midst of the busyness and schedules of the day, it's so good to turn the lights low, gaze across our newly rearranged living room and find my eyes laying on our newest piece of furniture. A bookshelf and a baby swing made room for a piano - a wonderful gift from a new friend and certainly I never believed that we would be a piano owing family but there is in, in all it's ivory and wood glory, just waiting to be played. Our afternoon Ava-cuddler was the first one to wring an actual song from the instrument, hopefully with time and a lot of patience I can learn a little more about music and playing it. Martha is very musical and we'd love to be able to share that with her... she already likes perching herself up on the piano bench and with her small psalter hymnal to bang out little tunes of her own and she's really seeming to like the piano very much. What a special gift!
The past few weeks... how do I sum them up for reading and understanding what the past few weeks has been like here in the Meadows. Well, I was glad Timothy could give a little update to let the general public know that I wasn't deathly ill or having done a runner and wasn't sure of where I was...I promise I was very much at home... not quite deathly ill but pretty fairly far under the weather and feeling pretty down about it all. The feeling ill started almost immediately in coincidence with starting on the coveted study drug over two weeks ago now. I started the drug on a Friday night after having made a trip into Toronto to pick up the study med. I was to take three tablets, twice a day and to take immodium alongside as a precaution as I was warned that the drug could cause a lot of uncomfortable tummy cramping and diarrhea - fortunately there's lots of anti-diarrheal drugs here and they did help...but for the first three days of the study drug, there were unpleasant GI effects every time I took the med... on top of me still feeling ridiculously painful in my right side under my arm as well as in the abdominal incision area - is that the chemo working on tumors, is that the liver pushing on things, is that tumor breaking down and causing pain - we can only hope for the latter reason.
In any case, by Monday, I was feeling pretty much better so off we went for our first very early morning appointment for chemo in Toronto. A new hospital, a new city,, new parking areas (crazy expensive - and we thought Hamilton was bad!), new staff, new routines. So check in at the registration desk, register for a white card, use white card to check-in to see pre-chemo nurse, see pre-chemo nurse with lots of questions about health and well-being before getting chemo, then saw study nurse and waited for chemo. Called in by number (something anonymous but a bit technical for me!). Nice small chemo rooms, four chairs to a room, TV/internet provided, nice little perks to make the day more dealwithable...But as the chemo slowly dripped into - a 90 minute infusion of two drugs, the old 5FU and the new Irinotecan, I could slowly feel myself dissolving into a pool of misery - nose, eyes, throat running, gut roiling, nausea, painful cramps... finally my nurse looked at me and asked me if i finally wanted the anti-reaction shot that she had offered earlier in the infusion - I guess I just wasn't sure how badly I would have to feel before taking the medication - the almost immediate return to better health was a sure guarantee that I would not be waiting long to take the shot on future rounds of chemo! And so we were through the infusion part of chemo #2, round 1. Praying that the chemo does its job and keeps those nasty cancer cells from growing and invading more parts of me. We were still waiting for the results of the last CT at this point but went home to outlast the last 46 hours of chemo via a baby bottle again and wait to see what the side-effects would be.
I was able to get out for choir practice on the Monday night - still on steroid side-effects of energy, I suppose. It was fun and a challenge to sing a mini-concert for some seniors at a nearby nursing home but good practice for the big concerts coming up in just a few weeks. Singing does bring balm and joy to a wounded heart and since our songs mostly focus on God's providence and unfailing love, I am brought to muse on that too - yet with many questions still weighing me down, trying to sink my barely floating soul, trying to cover my mind with clouds of doubt, while still the ever-present light underlies everything, brings hope for a moment, a dream to believe in, faith to make it through that next hour, that next day..but a very fragile faith at times it seems... like dancing on ice, never quite sure how thick the ice is in that particular area - how defences have gone up and paved that way to protect from further harm.
The past week and a half following this first chemo have been reminders of why chemo has such a bad name and why cancer is such a difficult enemy to fight, mentally, physically, emotionally, spiritually and in every way, shape or form. It constantly evolves, seeking newer, better hiding spots in my body, consuming, ravaging, taking what was healthy and chewing it up and spitting it out and leaving me to deal with the clods of dark thoughts and a body that is giving in on me on every side - new pains, constant nausea, decreased appetite, feeling very miserable and oh so tired. I thank everyone who got me through the last weeks... for a cool hand on a furrowed brow, for meals provided, for cleaning house help, for caring for my dear kids, for a blessed work environment for my husband, for the chance to see the ballet, Sleeping Beauty, on Saturday afternoon as a nice date day and to top it off, not feeling too miserable for dinner at Borrel, a very small Dutch food eatery in Toronto, one we had wanted to attend so badly but haven't been able to make it work all summer...lekker to partake of such a supper together.
And so, just finally feeling that the stomach cramps and nausea are suppressed and controlled by a complete chance in my anti-nausea meds as well as my pain meds, have resulted in me being able to feel better starting this Chemo #2, Round #2. Like I said, so far things are better under control and I even have a little more energy and spark. Early, early Monday morning, my friend Laura and I arrived at Sunnybrook on a mission to get a new central line called a port-a-cath, done in same day surgery/OR which brought back some memories of being wheeled in for the initial big surgery on my colon - never pleasant to have that brought back up again. But the port was inserted safely and without hiccup and then I was off to get bloodwork done, take the PICC line out, see the doctor, review the CT results, plan for future chemo dates and then off to wait for chemo. We had a super friendly and very efficient nurse who looked after me very well and chemo seemed to be done in no time - it takes about 90 minutes for the infusion to be complete - and then there is the baby bottle attached and taped up to the max (kinda paranoid about grabby baby hands - getting much more mobile and into pulling on things like Daddy's beard, my food plate and I'm afraid, my Port line. I love the idea of the port because once the needle is out, then the skin heals over and I can take a fully normal shower - no using a leaky plastic bag with a doekie stuffed into it to keep the PICC dry, no worrying about which side to pick up a child, no more worrying about blood pressure cuffs. I pray that this new port will be free from infection, will function well and will allow me to receive all I need for treatment and health. So after accomplishing all on our to-do list, we made it back to Hamilton by 6 pm and our over 12 hour day was finally complete. Time to hit the hay and cuddle up for a good sleep.
And so, you ask, how am I really doing? How are things truly under the surface? How am I feeling? I'm a lot of things, little bits of each thing - carpe diem, seize the day, boys, live for the moment, fearing test results, will they give me chemo when I've got a cough, how much has the disease progressed while we waited to be accepted to the trial, what is the trial med doing? I had to reduce the dose of the trial med due to stomach complications but we are now back up to 1 pill in the morning, 1 pill in the evening. I'm still in some discomfort from the port insertion (just another little scar to add to the repertoire) so taking meds for that. I'm sometimes so glad to be alive, on the highest peak but then so low when I remember how this past year has changed us, alterered us forever, as we seek to maintain a sense of who we are as a couple, as husband and wife, in the midst of the plethora of life roles floating around here - artist, writer, historian, parent, son, daughter, aunt, uncle, brother, sister, friend and co-worker. How do we split ourselves in so many parts as to be something to everyone, yet needing to care for ourselves too in the mist of crisis and upheaval. I'm sad at times, melancholy at times, can still see joy in our sweet children, who despite ups and downs, recall in our own dim memories stories of things we did as children that we see now echoed in our kids voices, experiences and family sagas.
Yet we hold onto the truth, the Word of life, who reminds us that He will never let us go, will not abandon us in the storm, will not lose us in the busyness of life, will not let forget to drop fat clouds of blessing round our heads, will lift up our weary heads and take our burdens, whatever they may be and carry it for us.
And so, from the Meadows, a slighty rambling but full update...
The past few weeks... how do I sum them up for reading and understanding what the past few weeks has been like here in the Meadows. Well, I was glad Timothy could give a little update to let the general public know that I wasn't deathly ill or having done a runner and wasn't sure of where I was...I promise I was very much at home... not quite deathly ill but pretty fairly far under the weather and feeling pretty down about it all. The feeling ill started almost immediately in coincidence with starting on the coveted study drug over two weeks ago now. I started the drug on a Friday night after having made a trip into Toronto to pick up the study med. I was to take three tablets, twice a day and to take immodium alongside as a precaution as I was warned that the drug could cause a lot of uncomfortable tummy cramping and diarrhea - fortunately there's lots of anti-diarrheal drugs here and they did help...but for the first three days of the study drug, there were unpleasant GI effects every time I took the med... on top of me still feeling ridiculously painful in my right side under my arm as well as in the abdominal incision area - is that the chemo working on tumors, is that the liver pushing on things, is that tumor breaking down and causing pain - we can only hope for the latter reason.
In any case, by Monday, I was feeling pretty much better so off we went for our first very early morning appointment for chemo in Toronto. A new hospital, a new city,, new parking areas (crazy expensive - and we thought Hamilton was bad!), new staff, new routines. So check in at the registration desk, register for a white card, use white card to check-in to see pre-chemo nurse, see pre-chemo nurse with lots of questions about health and well-being before getting chemo, then saw study nurse and waited for chemo. Called in by number (something anonymous but a bit technical for me!). Nice small chemo rooms, four chairs to a room, TV/internet provided, nice little perks to make the day more dealwithable...But as the chemo slowly dripped into - a 90 minute infusion of two drugs, the old 5FU and the new Irinotecan, I could slowly feel myself dissolving into a pool of misery - nose, eyes, throat running, gut roiling, nausea, painful cramps... finally my nurse looked at me and asked me if i finally wanted the anti-reaction shot that she had offered earlier in the infusion - I guess I just wasn't sure how badly I would have to feel before taking the medication - the almost immediate return to better health was a sure guarantee that I would not be waiting long to take the shot on future rounds of chemo! And so we were through the infusion part of chemo #2, round 1. Praying that the chemo does its job and keeps those nasty cancer cells from growing and invading more parts of me. We were still waiting for the results of the last CT at this point but went home to outlast the last 46 hours of chemo via a baby bottle again and wait to see what the side-effects would be.
I was able to get out for choir practice on the Monday night - still on steroid side-effects of energy, I suppose. It was fun and a challenge to sing a mini-concert for some seniors at a nearby nursing home but good practice for the big concerts coming up in just a few weeks. Singing does bring balm and joy to a wounded heart and since our songs mostly focus on God's providence and unfailing love, I am brought to muse on that too - yet with many questions still weighing me down, trying to sink my barely floating soul, trying to cover my mind with clouds of doubt, while still the ever-present light underlies everything, brings hope for a moment, a dream to believe in, faith to make it through that next hour, that next day..but a very fragile faith at times it seems... like dancing on ice, never quite sure how thick the ice is in that particular area - how defences have gone up and paved that way to protect from further harm.
The past week and a half following this first chemo have been reminders of why chemo has such a bad name and why cancer is such a difficult enemy to fight, mentally, physically, emotionally, spiritually and in every way, shape or form. It constantly evolves, seeking newer, better hiding spots in my body, consuming, ravaging, taking what was healthy and chewing it up and spitting it out and leaving me to deal with the clods of dark thoughts and a body that is giving in on me on every side - new pains, constant nausea, decreased appetite, feeling very miserable and oh so tired. I thank everyone who got me through the last weeks... for a cool hand on a furrowed brow, for meals provided, for cleaning house help, for caring for my dear kids, for a blessed work environment for my husband, for the chance to see the ballet, Sleeping Beauty, on Saturday afternoon as a nice date day and to top it off, not feeling too miserable for dinner at Borrel, a very small Dutch food eatery in Toronto, one we had wanted to attend so badly but haven't been able to make it work all summer...lekker to partake of such a supper together.
And so, just finally feeling that the stomach cramps and nausea are suppressed and controlled by a complete chance in my anti-nausea meds as well as my pain meds, have resulted in me being able to feel better starting this Chemo #2, Round #2. Like I said, so far things are better under control and I even have a little more energy and spark. Early, early Monday morning, my friend Laura and I arrived at Sunnybrook on a mission to get a new central line called a port-a-cath, done in same day surgery/OR which brought back some memories of being wheeled in for the initial big surgery on my colon - never pleasant to have that brought back up again. But the port was inserted safely and without hiccup and then I was off to get bloodwork done, take the PICC line out, see the doctor, review the CT results, plan for future chemo dates and then off to wait for chemo. We had a super friendly and very efficient nurse who looked after me very well and chemo seemed to be done in no time - it takes about 90 minutes for the infusion to be complete - and then there is the baby bottle attached and taped up to the max (kinda paranoid about grabby baby hands - getting much more mobile and into pulling on things like Daddy's beard, my food plate and I'm afraid, my Port line. I love the idea of the port because once the needle is out, then the skin heals over and I can take a fully normal shower - no using a leaky plastic bag with a doekie stuffed into it to keep the PICC dry, no worrying about which side to pick up a child, no more worrying about blood pressure cuffs. I pray that this new port will be free from infection, will function well and will allow me to receive all I need for treatment and health. So after accomplishing all on our to-do list, we made it back to Hamilton by 6 pm and our over 12 hour day was finally complete. Time to hit the hay and cuddle up for a good sleep.
And so, you ask, how am I really doing? How are things truly under the surface? How am I feeling? I'm a lot of things, little bits of each thing - carpe diem, seize the day, boys, live for the moment, fearing test results, will they give me chemo when I've got a cough, how much has the disease progressed while we waited to be accepted to the trial, what is the trial med doing? I had to reduce the dose of the trial med due to stomach complications but we are now back up to 1 pill in the morning, 1 pill in the evening. I'm still in some discomfort from the port insertion (just another little scar to add to the repertoire) so taking meds for that. I'm sometimes so glad to be alive, on the highest peak but then so low when I remember how this past year has changed us, alterered us forever, as we seek to maintain a sense of who we are as a couple, as husband and wife, in the midst of the plethora of life roles floating around here - artist, writer, historian, parent, son, daughter, aunt, uncle, brother, sister, friend and co-worker. How do we split ourselves in so many parts as to be something to everyone, yet needing to care for ourselves too in the mist of crisis and upheaval. I'm sad at times, melancholy at times, can still see joy in our sweet children, who despite ups and downs, recall in our own dim memories stories of things we did as children that we see now echoed in our kids voices, experiences and family sagas.
Yet we hold onto the truth, the Word of life, who reminds us that He will never let us go, will not abandon us in the storm, will not lose us in the busyness of life, will not let forget to drop fat clouds of blessing round our heads, will lift up our weary heads and take our burdens, whatever they may be and carry it for us.
And so, from the Meadows, a slighty rambling but full update...
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