Saturday September 28
Unitarian Church - 30 Cleary Ave., Ottawa
Pot Luck & volunteer sign up sheet can be found at the following link:
http://www.jooners.com/guest?utm_campaign=invites&utm_medium=email&utm_source=web&l=f37116ea-e872-45db-b076-4102ae3f0f15
Itinerary:
1:30 - 1:45 PM (Fellowship Hall)
Set up volunteers please meet up with us in the kitchen to help set up
1:45 - 2:00 PM
Guests may start to arrive with pot luck contributions
2:00 PM
Pot luck/mingling will begin
2:50 PM (Worship Hall)
Head drummer will start drumming in the worship hall - anyone wishing to join in the drumming can use this as their queue to join in the drumming
3:00 PM
Guests to gather in the worship hall if they have not already done so
3:05 PM
Story sharing to begin - starting with Julia, Ken & myself followed by the passing around of a talking stick to allow anyone feeling called to share a story to do so.
4:00 PM
Clean up volunteers will please start with the kitchen clean up
4:10 PM
Closing of story sharing
Guests to pick up their dishes from the kitchen area
4:30 PM (Outside front door to church - weather permitting)
Those wishing to stay and go for a community walk by the river in honour of mom and her love for walks/nature will please meet up with us outside the front door to the church.
Thursday, 19 September 2013
Reflection on Mom’s Last Days of Life – Filling in the Gaps
**Warning – this is going to be a long one!**
The last few days of my mother’s life were intense and busy
which made it impossible for me to update the blog with many details. I feel compelled to reflect on those last
days here both for the purpose of filling the gaps for others and as a means of
some added closure for me.
Monday September 9th
I think I’ll back up to Monday September 9th. Although I did post some details about that
day, I have since had the opportunity to talk about this day in more detail
with Julia and the get a better idea of how that day went for mom.
She was scheduled for her last radiation treatment for 1:30
PM. They brought her down at 1 PM and
Julia accompanied her. Upon arrival to
the radiation clinic, mom had her first major panic attack of the day. Julia & the nurses managed to calm her
down enough so that she could proceed with her treatment. After the treatment,
as mom was being wheeled out of the treatment room, the nurse kind of casually
said “I’m not sure if anyone told you, but the dr. would like to start with
radiation treatments on your neck tomorrow.”
This comment sent mom into another panic attack. From Julia’s perspective, this was the moment
that mom seemed to be done with this part of her journey – done with fighting
cancer.
Mom spent the rest of the day with her eyes shut and her
behavior started to be more restless. In
hindsight, we believe that her “terminal restlessness” began at this time to
some degree. More on that a bit later….
Julia came home after a long day at the hospital and a very
difficult afternoon of caring for mom through her restless behavior. As she
walked through the door of my house she fell apart emotionally, crying and
saying that mom can’t live like this. I
consoled her and helped to calm her down enough to tell me about her day. We
were both so worried about her that we decided to go and check in on her after
we ate dinner. We ended up spending
about 1 ½ hours with her that evening to help her settle before she went to
sleep.
Earlier that afternoon, the palliative care team decided to
change her pain meds from dilaudid to morphine.
Although the dilaudid had been quite effective for her, they were hoping
that by changing her to morphine she’d be less drowsy. Mom seemed happy to try this because she had
been having such a hard time keeping her eyes open all day. Unfortunately, this only resulted in her
becoming loopy & confused as opposed to less drowsy.
When we arrived on Monday evening, she looked up at us
confused to see us there. She asked what
was going on to which we replied that she just needed to rest. She said “I’m smarter than that you
know!” I think she thought in that
moment that maybe the dr.’s had called us in or something. Her comment made me smile and I explained “You
are on morphine, so things are probably really confusing for you right now. Julia
came home after being with you today and said you didn’t have a very good day
(insert mom’s comment “no kidding!”). We
were worried about you so we wanted to come in to check on you.” She said “Thank you.” As in thank you for
being honest with me. As I said, we stayed long enough to help her settle for
the night. We were willing to stay with
her until she fell asleep which she initially seemed happy about, but
eventually she said she was ready to sleep and we could leave. Many lovely little words were shared between
the three of us in this time. I think
she knew somehow that it could be the last time she’d be able to express these
things to us. I have to tell you, it
felt so wrong leaving the hospital that night.
In hindsight, I can see now how this was the beginning of the end.
Tuesday September
10
At around 7:45 AM on Tuesday, we received a call from the
hospital. The dr. was concerned about her and thought we should come in as soon
as we could. Julia had just gotten up so
she grabbed some water and something to eat on the run and left right
away. I had to get Anya on the school
bus before I could join her at the hospital.
As soon as she left, I called Predrag at work and he said he’d come home
right away to get Anya on the bus so I could leave sooner.
Julia arrived at the hospital around 8:30 or so. The dr. took her into another room to speak
with her. He explained that earlier that morning he felt as though mom might
only have hours to live, which is why he had the nurse call us to ask that we
come as soon as possible. He had managed
to get a chest tube into her with difficulty, but it had resulted in the
removal of more than 1 liter of fluid buildup from around her lungs. The removal of this fluid made it easier for
her to breathe (somewhat) and now she looked a bit more stable, but he still
felt that she only had hours to days to live.
He also explained that ordinarily someone having this degree of
difficulty with breathing could only survive longer if they were put on a ventilator,
although he was clear that this would only prolong her life and he didn’t think
it was the greatest idea. He wanted to
know what mom’s wishes might be since there wasn’t anything in the file. Julia
said that she felt it would be a bad idea to put her on a ventilator.
I arrived at the hospital just before 9 AM and had an
opportunity to see the dr. as well.
Between him & Julia, I was filled in on the situation. I confirmed for them both that mom had
specifically said she would NOT want to be put on a ventilator and she had
talked about wanting to sign a “do not resuscitate”. We were all comfortable with this decision and
thus began the next 48 hours (ish) of her final time with us.
At this point Julia called Steve in Napanee to ask that he
take the kids out of school and come to join us in Ottawa. I also communicated with Ken to give him an
update and he left work right away to join us in the hospital. Julia, Ken, and
I sat by mom’s bed and promised her that she would not be alone ever again. There
would always be one of us by her side.
She only had single word responses at this point and had her eyes shut
pretty much all of the time, but she acknowledged us and thanked us. We could tell she took some comfort in
knowing she would not be alone. Mom came
into this world lacking the nurturing, constant presence that she and any baby
would deserve. She lived a life riddled
with issues around abandonment. We made
sure that she knew and would experience the opposite on her way out of this
life!
After lunch, the palliative care dr. came in and Julia asked
that they switch mom back to dilaudid from the morphine. It was agreed that we didn’t want her to be
in a confused mind frame and that it really didn’t matter if she was
drowsy. We also spoke with the
palliative care dr. to seek advice on whether or not to have the kids (mom’s
grandchildren) come in to see her one last time. She explained that it can be good for the
kids to see her if she is relatively stable, that it is important to prepare
them for what they would be seeing, and suggested that we also prepare them for
the fact that it would be a short visit.
We therefore decided to have Predrag & Steve bring in the three
younger kids once Anya got home from school that day. That would give mom the
time to readjust from the morphine back to the dilaudid. Austin & Lillian,
being the oldest at 12 & 7 respectively), were given the choice about
whether or not to come in. Austin was
with his father that evening and so Larry spoke with him about it and he chose
not to come in which we respected as what he needed. Lillian chose to come in and therefore she
was brought in with the two four year olds.
We feel blessed that mom stabilized enough to see the kids
when they arrived around 5 PM. We
brought them in in turns so that it wouldn’t be too overwhelming. She actually snuggled with each of her
granddaughters and Ben hugged her arm.
Mom even opened her eyes a little and tried to focus in on their faces
one last time. After this visit, Julia
went back to my place with the kids & their dads.
Ken & I stayed with mom until around 8:30 or so when Ken
suggested that I could go home and get some rest. He had been there with us since 10 AM, but
said he was able to stay until midnight.
I went home, had dinner, and went to bed. At 11:30 PM Julia & Steve went back to
the hospital to relieve Ken after they had had a bit of rest (not much though).
Upon arrival to the hospital, Ken explained to Julia &
Steve how the past few hours had been. At this point mom needed things in a
very particular way (ex. Water on a sponge).
The best way I can describe what it was like to support her from this
point forward was that it was like supporting a woman going through transition
in labour.
Meanwhile, I was back at home trying to get some rest &
a bit of sleep. I did manage to get a
few hours in which was good because the next day was going to prove to be a
very long & draining one.
Wednesday
September 11
At around 5:30 AM I decided to get up and call Steve on his
cell to see how things were going. I was
also thinking that I would rather leave soon and miss traffic hour on my way
into the hospital. I showered, dressed, and grabbed something I could bring
with me to eat at the hospital arriving at around 6:30 AM.
As with each sift change, Julia & Steve updated me on
the previous few hours. I asked that
they send Predrag to join me once they got home so I’d have some help &
moral support. He arrived at about 7:30
AM and stayed with me until Ken came back to the hospital around 10:30 AM. Then Predrag went home to help out with the
kids. In the meantime, Michael
(Nickerson) had been called in to stay at our place for the next couple of days
to help out with the kids as well. We
had developed a great little family support network and were working together
flawlessly & intuitively to get through this very difficult time.
Ken and I stayed together with mom straight through until 4
PM. This almost 10 hour period of time
was the hardest for me (and likely Ken). This is when we got to learn firsthand
what terminal restlessness is all about, only for the first 8 hours of this
time I had no idea that it had a name, was common & could be helped with
medication. It wasn’t until the
palliative care dr. came in at around 2 PM that she said mom was experiencing
terminal restlessness and they could put her on a constant dose of anti-anxiety
meds with the added ability for us to push a button for an extra dose when
needed. Let me back up for a minute here. Supporting mom in this time was, as I said
earlier, like supporting a woman going through transition. She was in effect transitioning herself to
the spirit world. The restlessness was characterized by her lying in bed, then
needing to sit up but not having the strength to do it on her own and so we’d
have to help her, her trying occasionally to get out of bed except that it was
dangerous because she was hooked up to a chest tube & had a catheter, her
needing us to ever so slowly assist her back to a lying position, her needing
us to put a little sponge soaked with water on her tongue when it got too dry
(only at one point she thought it was a cherry flavoured sponge (it was pink)
and she wasn’t happy about that), and occasionally she would spit the sponge on
a stick out or throw it across the room. I could go on with more details, but I
think you get the picture. She was
generally uncomfortable, not necessarily in pain (although sometimes she was
that too), and couldn’t put her finger on what she needed, but would ask for
“help”. This was a very helpless time
for us and very difficult to watch; both emotionally and physically
draining.
Julia & Steve returned to the
hospital at 4 PM to relieve Ken & me.
We gave them the update on mom and were on our way. Shortly after we left, mom had the anxiety
meds pump administered and Julia reported that this made a big difference. After she had had three doses she fell asleep
and slept for about 3 hours. This must
have been a huge relief for her after going through a very difficult 12
hours. Julia even managed to get a bit
of rest during this time in one of the hospital chairs. When mom woke from the 3 hours of sleep, she
actually managed to have some conversations with Julia & Steve (albeit
limited in her speech). The worst was over at this point and the remainders of
her hours were manageable with regular pain & anxiety meds. She was receiving pain medication every 4
hours with an allowable top up part way through (which we felt she needed
usually around 2 ¾ hour from the time of receiving her scheduled dose).
At this point Julia was still
very tiered as she had not had much sleep in the last day and a half, so it was
agreed that her and Steve would stay at the hospital until 11 PM and then
Predrag & I would come back in to relieve them. When I got home on Wednesday afternoon I
spent some time with the family, had dinner, and Predrag & I went to bed
with Anya at 8:30 PM to get a couple of hours of sleep before having to get up
and go back to the hospital.
Predrag & I arrived at 11 PM
to relieve Julia & Steve. We spoke
briefly at that time about whether or not Julia felt a need to be there for
mom’s last breaths or if she needed sleep more at this point. She agreed that she had had enough time with
mom at this point and really needed to sleep.
I only needed to call her if/when mom had actually passed.
At this point, mom would be with
us for only 8 more hours. During that
time, she became progressively weaker.
When we first arrived that night, she would still have waves of restlessness,
but in a much calmer way with less energy behind it. At first we still needed to help her sit up
occasionally, however she would never stay sitting up for longer than a few
seconds.
Thursday September 12
As the early morning progressed,
mom would furrow her brow every once in a while. When she would do this, I would place my hand
behind her neck/upper back and repeat the following mantra to her calmly “I’m
right here, you are not alone, you are ok, trust in the process, I love
you”. Each time I spoke to her like
this, her brow would relax; sometimes only momentarily, in which case I would
repeat the mantra or something along those lines. This seemed to be what she needed or at least
it was what was intuitively coming to me.
Predrag stayed by my side through this time for moral support. Luckily mom was peaceful enough at this point
that I no longer needed his help to help her sit up etc.., but it was wonderful
to just have him there to give me the strength I needed to support mom.
At one point I came to the
realization that her breath had changed.
It was not so much that there was more time between breathes, but I
could tell that they were shallower. I felt
certain that she had very little time left with us at that point. It would have been around 3:45 AM or so that
I sent a text to Ken who was back at his home in the Brockville area, to let
him know where things were at and that I wasn’t sure if she’d make it to the
morning. He replied to say that he was
on his way and arrived at about 5 AM. We spent the next 2 hours by her side,
cherishing our last moments with her, and repeating our mantras to her when she
looked like she needed it. She became
even more peaceful about an hour to an hour and a half before she passed
away. Her breaths then started to get
longer and longer apart.
Julia called me at 7 AM to see
how things were going. I said she should
come to the hospital and that even if she left home right then, she might not
make it for her last breath. Julia &
Steve came right away. Mom took her very
last breath & her heart stopped beating somewhere around 7:15 AM. Julia & Steve arrived about 5 minutes
after that. In the end, Julia says she
is relieved to have not been there for the last bit.
We all said our final good byes,
hugged each other, cried (Ken & I even had one moment of hysterical
laughter…. Inside joke + nervousness = hysterical laughter at odd time). We then collected her things and left the
hospital.
We spent the next two days consoling
each other, catching up on rest & sleep, relaxing, sharing stories,
enjoying the food that was so lovingly brought to us by members of our awesome
community, and just generally being.
This has been the most profound,
difficult, awful yet beautiful experience of my life. No words could ever do it justice, but I am
happy to have taken the time to capture our story. Those last few days were a blur and it would
be easy to get lost in the details when trying to remember back. In fact, I’m
sure that some of the account here is not accurate because surely some details
have already been muddled in our minds.
In closing, I’d like to say thank
you again to all of the amazing people that have supported us, have held space
for mom during this time, and who have shared some wonderful stories with us
about their experiences with mom.
May her spirit live forever in
our hearts!
Ileana
Sunday, 15 September 2013
Celebration of Lise's Life
In a continued effort to have one place to post information about my mother, I will post details regarding the celebration of her life here on the blog (on this particular post to be exact).
I am pleased to be ready to share the full details of the celebration we are planning for my mother's life.
We would like to gather with mom's community for a late pot luck lunch, followed by a gathering in the church's worship hall for some drumming & sharing of stories about her life, followed by a walk by the river in honour of mom & her love of walks and nature (weather permitting).
If you have a drum and would like to bring it along to join in the drumming, please do! Mom also really loved the Fall and the colourful leaves on the trees. Anyone feeling called to bring along a few leaves you might find between now & then to place at her alter space or next to the guest book, please feel free to do so.
I have created a web based sign up sheet for people to sign up for either a lunch, dessert, or non-alcoholic beverage pot luck item. In addition, there are slots for 4 set up volunteers and 4 clean up volunteers. It would be very helpful to our family if a few people could sign up to help at these two times. I would like to note, however, that anyone who signs up for the clean up assistance may find themselves missing out on the last part of the story sharing taking place in the worship hall. If you feel called to be present for the full story sharing process, please feel free to leave those slots for folks that may feel ok about stepping away before the end of that. Should those spots not fill up... I'll be sure to reach out for help.
Here is the link to the sign up sheet:
http://www.jooners.com/guest?utm_campaign=invites&utm_medium=email&utm_source=web&l=f37116ea-e872-45db-b076-4102ae3f0f15
Saturday September 28
Unitarian Church - 30 Cleary Ave., Ottawa
Itinerary:
1:30 - 1:45 PM (Fellowship Hall)
Set up volunteers please meet up with us in the kitchen to help set up
1:45 - 2:00 PM
Guests may start to arrive with pot luck contributions
2:00 PM
Pot luck/mingling will begin
2:50 PM (Worship Hall)
Head drummer will start drumming in the worship hall - anyone wishing to join in the drumming can use this as their queue to join in the drumming
3:00 PM
Guests to gather in the worship hall if they have not already done so
3:05 PM
Story sharing to begin - starting with Julia, Ken & myself followed by the passing around of a talking stick to allow anyone feeling called to share a story to do so.
4:00 PM
Clean up volunteers will please start with the kitchen clean up
4:10 PM
Closing of story sharing
Guests to pick up their dishes from the kitchen area
4:30 PM (Outside front door to church - weather permitting)
Those wishing to stay and go for a community walk by the river in honour of mom and her love for walks/nature will please meet up with us outside the front door to the church.
I am pleased to be ready to share the full details of the celebration we are planning for my mother's life.
We would like to gather with mom's community for a late pot luck lunch, followed by a gathering in the church's worship hall for some drumming & sharing of stories about her life, followed by a walk by the river in honour of mom & her love of walks and nature (weather permitting).
If you have a drum and would like to bring it along to join in the drumming, please do! Mom also really loved the Fall and the colourful leaves on the trees. Anyone feeling called to bring along a few leaves you might find between now & then to place at her alter space or next to the guest book, please feel free to do so.
I have created a web based sign up sheet for people to sign up for either a lunch, dessert, or non-alcoholic beverage pot luck item. In addition, there are slots for 4 set up volunteers and 4 clean up volunteers. It would be very helpful to our family if a few people could sign up to help at these two times. I would like to note, however, that anyone who signs up for the clean up assistance may find themselves missing out on the last part of the story sharing taking place in the worship hall. If you feel called to be present for the full story sharing process, please feel free to leave those slots for folks that may feel ok about stepping away before the end of that. Should those spots not fill up... I'll be sure to reach out for help.
Here is the link to the sign up sheet:
http://www.jooners.com/guest?utm_campaign=invites&utm_medium=email&utm_source=web&l=f37116ea-e872-45db-b076-4102ae3f0f15
Saturday September 28
Unitarian Church - 30 Cleary Ave., Ottawa
Itinerary:
1:30 - 1:45 PM (Fellowship Hall)
Set up volunteers please meet up with us in the kitchen to help set up
1:45 - 2:00 PM
Guests may start to arrive with pot luck contributions
2:00 PM
Pot luck/mingling will begin
2:50 PM (Worship Hall)
Head drummer will start drumming in the worship hall - anyone wishing to join in the drumming can use this as their queue to join in the drumming
3:00 PM
Guests to gather in the worship hall if they have not already done so
3:05 PM
Story sharing to begin - starting with Julia, Ken & myself followed by the passing around of a talking stick to allow anyone feeling called to share a story to do so.
4:00 PM
Clean up volunteers will please start with the kitchen clean up
4:10 PM
Closing of story sharing
Guests to pick up their dishes from the kitchen area
4:30 PM (Outside front door to church - weather permitting)
Those wishing to stay and go for a community walk by the river in honour of mom and her love for walks/nature will please meet up with us outside the front door to the church.
Thursday, 12 September 2013
The Spirit World - Thursday September 12
This morning mom passed away peacefully after a couple of days of being surrounded 24/7 by her immediate loved ones. There is so much to say, but at the moment I am feeling too drained.
We will be sure to get the word out about her memorial/celebration of her life once the details have been figured out and plans made.
Thank you to everyone for holding such sacred space for her in her final days and hours!
For the moment, we are hunkered down with the immediate family and those of us who spent many hours in the last 2 days by her side will be needing to get some sleep and well needed rest.
Rest in peace my beautiful, amazing, inspiring, gentle, loving, precious and oh so much more mother. We love you so much and you will always be with us in spirit, as will we be with you forever in spirit.
We will be sure to get the word out about her memorial/celebration of her life once the details have been figured out and plans made.
Thank you to everyone for holding such sacred space for her in her final days and hours!
For the moment, we are hunkered down with the immediate family and those of us who spent many hours in the last 2 days by her side will be needing to get some sleep and well needed rest.
Rest in peace my beautiful, amazing, inspiring, gentle, loving, precious and oh so much more mother. We love you so much and you will always be with us in spirit, as will we be with you forever in spirit.
Wednesday, 11 September 2013
Wednesday Sept 11
Mom has taken a turn for the worse. Yesterday dr's told us she has hours to days to live. We are taking shifts to stay by her bedside as she makes her way to the spirit world. I don't have time to post details at the moment, so please continue to help us hold space for her. We all need the strength of the community with us now.
Monday, 9 September 2013
Monday September 9
There hasn't been a lot to update over the week end as it is always more quiet than during the working week. This past week end was a difficult one for mom. She woke up on Saturday with nausea, vomiting, and little to no appetite.
I stopped by on my way out of town in the morning to drop off a few things at which point she wasn't doing great, but was fairly stable. As I came back into town later that afternoon, I called her to see how she was doing and she reported that she had had a really difficult afternoon. She had not eaten all day, was feeling very dehydrated, and her breathing was worsening. The silver lining was that she was taken care of by an angel of a nurse. Nurse Michelle - my mother's week end angel who came to her at the perfect time. Michelle talked mom through her crisis, visualized with her, and spoke of the Chacras. She spent a lot of time by mom's bedside on Saturday and was on shift again Sunday. There could not have been a better person to come to her aid at this low time. For this my mother is extremely grateful, as am I.
Mom has been hooked back up to IV fluids and still is to this moment. This has been helpful. She has also come to a time where she is needing to withdraw from people around her, even more so than before, to focus only on herself, her breathing, her comfort, and her healing. Yesterday, Sunday, I spoke with her but 5 minutes. Ken visited with her in the evening, but as you can see she spent very little time with people other than the nurses this past week end. I believe this is what she was feeling a need for. She is very good at listening to her body. We were told by the radiation therapist last Tuesday that things would likely get worse before they got better, including her breathing. Let's hope that this is why she is having such a rough go of it these days.
On the flip side, this morning she woke up lying on her right side. She has not been able to sleep on her right side for over a month now as it is the right side of her body/chest where the tumor in her lungs is in. She reported having had the best night's sleep since being in the hospital. The palliative care nurses that came in today also said that it sounds as though there is more air moving through her lungs when they listen. I'm not sure how accurate they can be with this, but we'll take any positive sign we can take.
As of yesterday, Julia has been back in town. She spent quite a bit of time with mom today and accompanied her to the last of her scheduled radiation treatments.
Today was probably the most difficult day for mom thus far. Her breathing is significantly more difficult to the point that it has changed her voice. She needs to conserve every bit of energy she possibly has. Julia came home for dinner at around 6 PM after spending about 7 hours with her. Throughout the day she had a few panic attacks, mostly related to her difficulties with breathing. She went for her last radiation treatment on her lungs and had a panic attack just before going in for the treatment. The nurses, gentle as they are, managed to calm her enough for her treatment. After dinner, we went to the hospital together and spent another 1.5 hours with her. We just wanted to check in on her, but she wasn't sleeping and was grateful for our presence and the help in getting settled before bed.
Tomorrow she has a follow up with the oncologist. Julia & I will both be with her to hear what he has to say about her next steps and how she is reacting to this first bout of radiation. Originally the plan was to start radiation on her neck tomorrow, but I am not sure that she will be strong enough for it.
The nurses are also now giving her morphine for her pain (mostly in the form of a headache). This has lead to some loopy discussions and some confusion on mom's part.
I wish I could be the bearer of better news, but today and the past couple have days have been the worse for her yet. Here's hoping that it truly is the "worse before the better".
Please continue to send as many healing vibes as you can. She can use every bit she can get!
I apologize if this posting seems a bit disjointed. I'm trying to keep the details straight and provide decent updates without writing too much.
I stopped by on my way out of town in the morning to drop off a few things at which point she wasn't doing great, but was fairly stable. As I came back into town later that afternoon, I called her to see how she was doing and she reported that she had had a really difficult afternoon. She had not eaten all day, was feeling very dehydrated, and her breathing was worsening. The silver lining was that she was taken care of by an angel of a nurse. Nurse Michelle - my mother's week end angel who came to her at the perfect time. Michelle talked mom through her crisis, visualized with her, and spoke of the Chacras. She spent a lot of time by mom's bedside on Saturday and was on shift again Sunday. There could not have been a better person to come to her aid at this low time. For this my mother is extremely grateful, as am I.
Mom has been hooked back up to IV fluids and still is to this moment. This has been helpful. She has also come to a time where she is needing to withdraw from people around her, even more so than before, to focus only on herself, her breathing, her comfort, and her healing. Yesterday, Sunday, I spoke with her but 5 minutes. Ken visited with her in the evening, but as you can see she spent very little time with people other than the nurses this past week end. I believe this is what she was feeling a need for. She is very good at listening to her body. We were told by the radiation therapist last Tuesday that things would likely get worse before they got better, including her breathing. Let's hope that this is why she is having such a rough go of it these days.
On the flip side, this morning she woke up lying on her right side. She has not been able to sleep on her right side for over a month now as it is the right side of her body/chest where the tumor in her lungs is in. She reported having had the best night's sleep since being in the hospital. The palliative care nurses that came in today also said that it sounds as though there is more air moving through her lungs when they listen. I'm not sure how accurate they can be with this, but we'll take any positive sign we can take.
As of yesterday, Julia has been back in town. She spent quite a bit of time with mom today and accompanied her to the last of her scheduled radiation treatments.
Today was probably the most difficult day for mom thus far. Her breathing is significantly more difficult to the point that it has changed her voice. She needs to conserve every bit of energy she possibly has. Julia came home for dinner at around 6 PM after spending about 7 hours with her. Throughout the day she had a few panic attacks, mostly related to her difficulties with breathing. She went for her last radiation treatment on her lungs and had a panic attack just before going in for the treatment. The nurses, gentle as they are, managed to calm her enough for her treatment. After dinner, we went to the hospital together and spent another 1.5 hours with her. We just wanted to check in on her, but she wasn't sleeping and was grateful for our presence and the help in getting settled before bed.
Tomorrow she has a follow up with the oncologist. Julia & I will both be with her to hear what he has to say about her next steps and how she is reacting to this first bout of radiation. Originally the plan was to start radiation on her neck tomorrow, but I am not sure that she will be strong enough for it.
The nurses are also now giving her morphine for her pain (mostly in the form of a headache). This has lead to some loopy discussions and some confusion on mom's part.
I wish I could be the bearer of better news, but today and the past couple have days have been the worse for her yet. Here's hoping that it truly is the "worse before the better".
Please continue to send as many healing vibes as you can. She can use every bit she can get!
I apologize if this posting seems a bit disjointed. I'm trying to keep the details straight and provide decent updates without writing too much.
Ileana
Friday, 6 September 2013
Friday September 6
Today marked mom's 4th radiation treatment. She will have the last of the scheduled treatments on Monday and has a follow up appointment with the oncologist on Tuesday to discuss next steps.
As for how she is holding up, well there's a lot of positive this week which is lovely to be experiencing. When we speak on the phone the volume & quality of her voice are more "her". She seems to be more energetic; as in she doesn't just seem to want to sleep all the time (she's not running marathons anytime soon though). She's been a bit less queasy and is eating a tad better. For lunch today I watched her eat a beautiful, lovingly made soup from Phyllis with absolute delight. It's nice to see her delighted by anything that falls under the category of food these days. She is also still really enjoying the fresh carrot, celery, wheat grass juice that Julia or I make for her daily. It may be that being off the antibiotics is helping to perk her up and handle food a bit better. She has also said that she thinks she might be able to breathe a bit deeper now, which would more likely be due to the radiation.
So for now, we continue in this waiting game to see what the next step will be. For now we know that she needs to finish up the current treatment and follow up with the oncologist. Next steps beyond Tuesday are unknown at the moment.
In the meantime, the pragmatic and beautifully spirited woman that my mother is, she has embarked on a little entrepreneurial venture from the hospital. She is putting the word out there into the community about the sets of "Earthwyse Reflection Cards" that she has to offer and some of her paintings. She would like to sell them as a means of raising some money to help pay for her upcoming vitamin C IV treatments. The usual asking price for the card sets is $20.00, although any contributions larger than that would be gladly accepted. She is asking $200 per painting as each painting sold at this price will cover one of the treatments she will undergo. Please feel free to spread the word!
For more information about the cards & to view some of her paintings, please feel free to swing on over to her website at the following link (note that a couple of the paintings are already spoken for). Information about the cards can be found under the "offerings" tab.
http://www.earthwyse.ca/
Happy Friday everyone and have a wonderful week end!
As for how she is holding up, well there's a lot of positive this week which is lovely to be experiencing. When we speak on the phone the volume & quality of her voice are more "her". She seems to be more energetic; as in she doesn't just seem to want to sleep all the time (she's not running marathons anytime soon though). She's been a bit less queasy and is eating a tad better. For lunch today I watched her eat a beautiful, lovingly made soup from Phyllis with absolute delight. It's nice to see her delighted by anything that falls under the category of food these days. She is also still really enjoying the fresh carrot, celery, wheat grass juice that Julia or I make for her daily. It may be that being off the antibiotics is helping to perk her up and handle food a bit better. She has also said that she thinks she might be able to breathe a bit deeper now, which would more likely be due to the radiation.
So for now, we continue in this waiting game to see what the next step will be. For now we know that she needs to finish up the current treatment and follow up with the oncologist. Next steps beyond Tuesday are unknown at the moment.
In the meantime, the pragmatic and beautifully spirited woman that my mother is, she has embarked on a little entrepreneurial venture from the hospital. She is putting the word out there into the community about the sets of "Earthwyse Reflection Cards" that she has to offer and some of her paintings. She would like to sell them as a means of raising some money to help pay for her upcoming vitamin C IV treatments. The usual asking price for the card sets is $20.00, although any contributions larger than that would be gladly accepted. She is asking $200 per painting as each painting sold at this price will cover one of the treatments she will undergo. Please feel free to spread the word!
For more information about the cards & to view some of her paintings, please feel free to swing on over to her website at the following link (note that a couple of the paintings are already spoken for). Information about the cards can be found under the "offerings" tab.
http://www.earthwyse.ca/
Happy Friday everyone and have a wonderful week end!
Ileana
Wednesday, 4 September 2013
Quick Update
I haven't actually seen mom today, but have spoken to her a couple of times.
She had her second radiation therapy this morning at 10:30. This one was even faster than yesterday as they didn't need to re-draw lines on her chest. To date she is not feeling any particular side effects from the treatments. For now this is a relief and we continue to hope for the same in the coming days.
She had her second radiation therapy this morning at 10:30. This one was even faster than yesterday as they didn't need to re-draw lines on her chest. To date she is not feeling any particular side effects from the treatments. For now this is a relief and we continue to hope for the same in the coming days.
She is completely off the antibiotics now and seems to be feeling a bit better. She managed to eat a bit more today, although it is slow progress on this front. No matter, progress is progress and I was thrilled to hear that she got a some more protein into her today. In addition, her voice sounded really good to me today.
She's still tiered and weak, but boy does she have a beautiful, radiant, and strong spirit. That's my mama & I'm super, duper proud of her.
Thanks to everyone for your continued support. It is coming to us in various ways and it is all extremely appreciated. I hope you don't all tire of hearing me thank everyone, but I could never thank everyone enough and so I'm sorry to say, but I will likely be a bit of a broken record in that way:)
Ileana
Visitors
This will just be a brief post for now.
I've received several requests about whether or not mom is up for a visit. Although the sentiment means an awful lot to her, at the moment she is very tiered and quite week resulting in not feeling up for many visitors.
Please know that your thoughtfulness is really amazing and I will post again on the blog if/when a time comes that she is open to seeing more people.
I've received several requests about whether or not mom is up for a visit. Although the sentiment means an awful lot to her, at the moment she is very tiered and quite week resulting in not feeling up for many visitors.
Please know that your thoughtfulness is really amazing and I will post again on the blog if/when a time comes that she is open to seeing more people.
Ileana
Tuesday, 3 September 2013
Tuesday September 3 - Post Radiation Therapy Session #1
Upon arrival at the hospital today to accompany mom for her first treatment, I found her a bit more energetic than over the week end. That said, she is still having issues with appetite & queasiness. She said that she had spoken with the floor doctor earlier who said that he would take her off of the antibiotics she's been on (I believe since she was admitted - 2 wks ago). In addition, there was one medication that she was on to help her with her queasiness which may actually be hindering her appetite. He will wean her off this medication. With any luck, these two changes in her medications will help her to feel a bit better energy & appetite/queasiness wise.
At roughly 2 PM the porter brought mom down to the radiation clinic (I tagged along). Her time with the technician was very short; about 20 minutes. After that we spoke with another technician to ask what ever questions we had about the possible side effects & their management, as well as what we could expect in the coming days. The treatment itself was fairly easy for mom with the exception of the challenge of having to lie flat on her back, stay as still as possible, and not cough for the duration of the treatment.
They are currently, and for the next 5 days, treating her on her chest at the location of the tumor in her lungs. There is the possibility that following this five days, the oncologist may suggest continuing with some sessions of radiation on her neck at the location of another tumor or lesion there. We will know more about that in the coming days.
For now the hope is that the side effects are not too difficult. She may experience tieredness, some coughing, and possibly some additional shortness of breath in the short term. At any rate, so far so good and we shall see how she does in the coming days.
I'd like to thank everyone for the continued well wishes, thoughts, prayers, healing vibes being sent her way. Mom even received mail in the hospital today:)
I'd also like to send out a quick shout out of thanks to Dana & Sheila who have lovingly provided my family with meals to help out in this overwhelming time!
At roughly 2 PM the porter brought mom down to the radiation clinic (I tagged along). Her time with the technician was very short; about 20 minutes. After that we spoke with another technician to ask what ever questions we had about the possible side effects & their management, as well as what we could expect in the coming days. The treatment itself was fairly easy for mom with the exception of the challenge of having to lie flat on her back, stay as still as possible, and not cough for the duration of the treatment.
They are currently, and for the next 5 days, treating her on her chest at the location of the tumor in her lungs. There is the possibility that following this five days, the oncologist may suggest continuing with some sessions of radiation on her neck at the location of another tumor or lesion there. We will know more about that in the coming days.
For now the hope is that the side effects are not too difficult. She may experience tieredness, some coughing, and possibly some additional shortness of breath in the short term. At any rate, so far so good and we shall see how she does in the coming days.
I'd like to thank everyone for the continued well wishes, thoughts, prayers, healing vibes being sent her way. Mom even received mail in the hospital today:)
I'd also like to send out a quick shout out of thanks to Dana & Sheila who have lovingly provided my family with meals to help out in this overwhelming time!
Ileana
Tuesday September 3 - Noon
I'm on my way to the hospital to provide mom with moral support for her first radiation treatment. Here we come "take action" phase.
I will update the blog later to let you all know how the treatment went and how she dealt with it.
I will update the blog later to let you all know how the treatment went and how she dealt with it.
Ileana
Monday, 2 September 2013
The past two days have been much more mellow. Mom is feeling very weak and having a hard time getting much food into her.
She is experiencing mixed feelings about the radiation therapy that will start tomorrow. On the one hand, we are all looking forward to moving from a "waiting around" phase of this journey to a "take action" phase. On the other hand, she is somewhat apprehensive about how she will do with the treatment.
Mom is feeling too tiered for many visitors at the moment, but the well wishes, thoughts, prayers, and healing energy that is coming from our community of friends and family continues to be extremely appreciated. Even if you've already sent messages for us to put in her binder, don't hesitate to send more thoughts if they come to you. She could never get too many:)
See you all on the other side of day 1 of radiation.
Ileana
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