(Written 3/5/12)
For many days our lives have been filled with tiny leaps forward for Zoë. She has had the JP Drain removed from her side, along with the nephrostomy tubes. She is being fed by an NG tube again (the tube in her nose to her stomach). The only tube that is temporary and still in place is her catheter, which will stay in until her chemo is over to protect her bladder from the effects of the chemo drugs.
I have taken a break from writing the past few days. I believe for several reasons. One being pure fatigue, both physically, and mentally. But also to catch my breath. Reading back on what has happened in the past few days, weeks, months…wow! My life has been flipped upside down, rerouted, detoured, and we don’t have a mapped out
route for where we are going next, but it will be a very interesting journey I am sure.
There is something so important about silence. I have been contacted by several people in the past few days asking about Zoë, and being concerned that I have not written in a while. Please don't ever take my silence as bad thing.
Growing up my mother would often times sush us, or tell us kids to be quiet. It was as if any little noise was too loud, or bothersome to her. I now understand her need for silence, both as a mother, and as someone with a very loud life. My search for silence started when I was in college. When I would walk to the train station I would put on my headphones, but not music. I would pretend as though I could not hear those around me, and just listened, and
took in the environment of the city around me. Later in life after moving back up to New England I began driving long stretches with out music, or NPR, and it would only occur to me, upon arrival, that I did not turn on the radio during my travels. The silence was not quiet, because it was filled with thoughts in my head. Now, the greatest time of my day is my shower. I get to both reflect, and meditate. I try to create silence both in the space I inhabit, as well as in my head. It is not easy to calm my thoughts, but I do my best.
I once listened to an interview with Anne D. LeClaire a woman who practices total silence on the first and third Monday of each month, and has done so for over seventeen years. Her book Listening Below The Noise is a semi-memoir and part philosophical inquiry about silence, and how it can help us with the world around us. I think I will pick up this book when I am done reading my current book. I don't know if I will go as far as Anne, and go a full day with silence. But I think that I would like to plan for at least an hour or two every week to dedicate to silence.
Today Zoë will be getting her fourth round of Chemo. She was to start this morning, but like all things in the hospital the orders took longer than to be expected, and she will not start until this evening. I am so very nervous and anxious. I cannot wait to kill off the last bits of this cancer, and banish it forever from Zoë’s body.
In order to prepare for her next round of chemo I have been doing my best to get as much sleep as possible, as well as some exercise (walking around the hospital), eating at least two meals a day (trying as hard as I can for three), and I even managed to leave the hospital for a few hours the other day for a manicure and pedicure. Boy did that feel good!
Zoë has been working hard at healing from her surgery, sleeping, and eating. She is not quite back to her normal self yet…but what is her “normal”? She is sleeping through the night, which is GREAT, the feeds that she is on are not making her backed up or constipated (YAY!), and her belly is not distended anymore.
(Written 3/6/12)
This morning Zoë woke up making a pouty face. She was not really crying, or acting hungry. She just seemed like she knew she was not feeling well, and did not know why. It broke my heart. I was nearly in tears to see her feeling so crappy. But I caught myself and refused to cry in front of her. She did not need to see that I was also feeling crappy about her feeling crappy. Those downward spirals are not helpful.
It looks like Zoë will be heading home this weekend. Zeppo and I will be back to learning new things, like administering IV antibiotics, and we will be watching for any changes in her from the chemo, such as mouth sores, possible dehydration, and loss of coloring that could mean low blood counts.
We are also working on getting Zoë covered under Mass Health. She is only partially covered at the moment, which is not going to help much with one major gap in our health plan. We only get 20 home nursing visits a year under our family plan. Zoë will burn through that in no time. Mass Health should help cover the expense of home nursing. At least I hope it will. I don’t know yet how much a full time visiting nurse costs, but my guess is it is not cheap. Even if she comes to the house minimally it is still at least one or two days a week that she would have to come. Ugg….
So yesterday I managed to go for a walk while Zeppo and Zoë napped together.
For many days our lives have been filled with tiny leaps forward for Zoë. She has had the JP Drain removed from her side, along with the nephrostomy tubes. She is being fed by an NG tube again (the tube in her nose to her stomach). The only tube that is temporary and still in place is her catheter, which will stay in until her chemo is over to protect her bladder from the effects of the chemo drugs.
I have taken a break from writing the past few days. I believe for several reasons. One being pure fatigue, both physically, and mentally. But also to catch my breath. Reading back on what has happened in the past few days, weeks, months…wow! My life has been flipped upside down, rerouted, detoured, and we don’t have a mapped out
route for where we are going next, but it will be a very interesting journey I am sure.
There is something so important about silence. I have been contacted by several people in the past few days asking about Zoë, and being concerned that I have not written in a while. Please don't ever take my silence as bad thing.
Growing up my mother would often times sush us, or tell us kids to be quiet. It was as if any little noise was too loud, or bothersome to her. I now understand her need for silence, both as a mother, and as someone with a very loud life. My search for silence started when I was in college. When I would walk to the train station I would put on my headphones, but not music. I would pretend as though I could not hear those around me, and just listened, and
took in the environment of the city around me. Later in life after moving back up to New England I began driving long stretches with out music, or NPR, and it would only occur to me, upon arrival, that I did not turn on the radio during my travels. The silence was not quiet, because it was filled with thoughts in my head. Now, the greatest time of my day is my shower. I get to both reflect, and meditate. I try to create silence both in the space I inhabit, as well as in my head. It is not easy to calm my thoughts, but I do my best.
I once listened to an interview with Anne D. LeClaire a woman who practices total silence on the first and third Monday of each month, and has done so for over seventeen years. Her book Listening Below The Noise is a semi-memoir and part philosophical inquiry about silence, and how it can help us with the world around us. I think I will pick up this book when I am done reading my current book. I don't know if I will go as far as Anne, and go a full day with silence. But I think that I would like to plan for at least an hour or two every week to dedicate to silence.
Today Zoë will be getting her fourth round of Chemo. She was to start this morning, but like all things in the hospital the orders took longer than to be expected, and she will not start until this evening. I am so very nervous and anxious. I cannot wait to kill off the last bits of this cancer, and banish it forever from Zoë’s body.
In order to prepare for her next round of chemo I have been doing my best to get as much sleep as possible, as well as some exercise (walking around the hospital), eating at least two meals a day (trying as hard as I can for three), and I even managed to leave the hospital for a few hours the other day for a manicure and pedicure. Boy did that feel good!
Zoë has been working hard at healing from her surgery, sleeping, and eating. She is not quite back to her normal self yet…but what is her “normal”? She is sleeping through the night, which is GREAT, the feeds that she is on are not making her backed up or constipated (YAY!), and her belly is not distended anymore.
(Written 3/6/12)
This morning Zoë woke up making a pouty face. She was not really crying, or acting hungry. She just seemed like she knew she was not feeling well, and did not know why. It broke my heart. I was nearly in tears to see her feeling so crappy. But I caught myself and refused to cry in front of her. She did not need to see that I was also feeling crappy about her feeling crappy. Those downward spirals are not helpful.
It looks like Zoë will be heading home this weekend. Zeppo and I will be back to learning new things, like administering IV antibiotics, and we will be watching for any changes in her from the chemo, such as mouth sores, possible dehydration, and loss of coloring that could mean low blood counts.
We are also working on getting Zoë covered under Mass Health. She is only partially covered at the moment, which is not going to help much with one major gap in our health plan. We only get 20 home nursing visits a year under our family plan. Zoë will burn through that in no time. Mass Health should help cover the expense of home nursing. At least I hope it will. I don’t know yet how much a full time visiting nurse costs, but my guess is it is not cheap. Even if she comes to the house minimally it is still at least one or two days a week that she would have to come. Ugg….
So yesterday I managed to go for a walk while Zeppo and Zoë napped together.
I decided to walk over to the new Dana Farber Building where there is a beautiful indoor garden and quiet spaces. I
got a great sandwich and enjoyed some quiet time in the garden. I plan on going there more often to refuel my stomach, as well as clear my mind. I love that the space is also cell phone free, and no food, and is meant to be a quiet place. Hum....maybe I found my place to be silent after all...
To occupy myself this time around at the hospital I have been doing a lot of crocheting (special projects that if
finished will be at the Rock for Zoë event on Saturday *wink*), watching some White Collar (when Zoë is passed out), and taking my usual extra-long extra-hot morning shower.
I also plan on taking the Shabbat Elevator this Friday, or Saturday. For those of you not in the know on the Jewish Sabbath (Shabbat) you are not supposed to work. So pushing an elevator button can be (for some) considered "work". Therefor there is an elevator dedicated to going up and down to each and every floor, all day from Friday sundown, to Saturday sundown.
I don't plan on taking this elevator because I have all of a sudden decided to be Jewish. Although I believe I may be adopted by the faith, hehehe. No. I am working on my patience, and learning to slow down. I find that there is always a reason for me to rush, especially lately. I have always been someone who will plan my time out well enough to not have to rush. But lately with Zoë needing me, and by needing her I find myself in an anxious rush the moment I leave her, until I return. I need to work on allowing Zeppo the time and space to be the amazing father that he is, and I need Zoë to learn that her Daddy will care for her just as well as her Mommy does. I need to learn to enjoy the time that I have away from her, and to not be in a panic from the moment I leave her. So... this coming Shabbat I will begin to practice the art of the slowdown. I will ride the elevator, and as it stops on each floor I will remind myself that it is ok to be gone another minute longer, and another minute longer, and another minute longer.... I will calm my mind, and in silence summon the faith and trust I have, and know that Zoë is OK, even if I am not there.
Well... I am running out of yarn fast, and I may today try to find a place to pick up some more. It will be good to drive my car (after about 15 days of not driving). Man…what a time warp. Zeppo mentioned that he has been at the Ronald McDonald House for two weeks…where did that time go?
Well off to find that hot shower, and maybe my car keys!
This post is brought to you today by Zeppo. Thank you for watching Zoë and giving me the time to write.
Love and Hugs!
(Written Later on 3/6/12)
P.S. I did manage to depart in a car from CHB this afternoon. I did not do as well as I had hoped with my panic to return to the hospital. But I think it had more to do with the idiots on the road than my anxiety about returning to Zoë.
got a great sandwich and enjoyed some quiet time in the garden. I plan on going there more often to refuel my stomach, as well as clear my mind. I love that the space is also cell phone free, and no food, and is meant to be a quiet place. Hum....maybe I found my place to be silent after all...
To occupy myself this time around at the hospital I have been doing a lot of crocheting (special projects that if
finished will be at the Rock for Zoë event on Saturday *wink*), watching some White Collar (when Zoë is passed out), and taking my usual extra-long extra-hot morning shower.
I also plan on taking the Shabbat Elevator this Friday, or Saturday. For those of you not in the know on the Jewish Sabbath (Shabbat) you are not supposed to work. So pushing an elevator button can be (for some) considered "work". Therefor there is an elevator dedicated to going up and down to each and every floor, all day from Friday sundown, to Saturday sundown.
I don't plan on taking this elevator because I have all of a sudden decided to be Jewish. Although I believe I may be adopted by the faith, hehehe. No. I am working on my patience, and learning to slow down. I find that there is always a reason for me to rush, especially lately. I have always been someone who will plan my time out well enough to not have to rush. But lately with Zoë needing me, and by needing her I find myself in an anxious rush the moment I leave her, until I return. I need to work on allowing Zeppo the time and space to be the amazing father that he is, and I need Zoë to learn that her Daddy will care for her just as well as her Mommy does. I need to learn to enjoy the time that I have away from her, and to not be in a panic from the moment I leave her. So... this coming Shabbat I will begin to practice the art of the slowdown. I will ride the elevator, and as it stops on each floor I will remind myself that it is ok to be gone another minute longer, and another minute longer, and another minute longer.... I will calm my mind, and in silence summon the faith and trust I have, and know that Zoë is OK, even if I am not there.
Well... I am running out of yarn fast, and I may today try to find a place to pick up some more. It will be good to drive my car (after about 15 days of not driving). Man…what a time warp. Zeppo mentioned that he has been at the Ronald McDonald House for two weeks…where did that time go?
Well off to find that hot shower, and maybe my car keys!
This post is brought to you today by Zeppo. Thank you for watching Zoë and giving me the time to write.
Love and Hugs!
(Written Later on 3/6/12)
P.S. I did manage to depart in a car from CHB this afternoon. I did not do as well as I had hoped with my panic to return to the hospital. But I think it had more to do with the idiots on the road than my anxiety about returning to Zoë.
RSS Feed