I'm not done yet ❤️
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Szybatka Family
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Szybatka Family
I've been home and officially on hospice now for about two weeks and.... it's been relatively quiet! I didn't realize the amount of noise being a cancer patient was causing in my life. The amount of appointments, phone calls, mychart messages, wow, it was a lot. My days that were spent literally living and working in my car between appointments are now spent resting, spending time with Adam while he took a leave from work, and listening to what my body needs and giving it without hesitation or judgement is the type of care I wish all of us did for ourselves. What a beautiful thing it is.
It's been so peaceful here at home, even amongst the feral wildlings 😅 and the joy I feel each day really solidified my decision to transfer to hospice. The idea of dying is really scary, and with ending active treatment, we also end all scans so I don't know what the cancer is doing. There are definitely signs of progression - increased pain in my kidneys, I can feel and see the pectoral muscle tumor growing which is also beginning to radiate pain along my armpit and lower ribs, and some lingering headaches from the surgery (hopefully just that and not anything growing back already).
As someone who likes to know all the things, this is really like the grand finale of relinquishing control... I'm really going with a bang here 🤣 but in all seriousness, I feel like I can actually breathe for the first time in a long time.
My hospice nurse is freaking amazing and she comes once per week right now. The only time I really will have to leave for an appointment is this week to have the sutures in my head removed. My hair has been growing back quickly and I'm curious what will happen with the growth and the big scar. I'm hoping it will cover but I'll have to be patient (yay, my favorite thing ever..) and see what happens 💁♀️ but I LOVE having my eyelashes back!! Best part of ending chemo hands down, ha!
I feel like this transition to hospice has also given more capacity to show up for my kids and I have been a better mom because of it. I officially retired from work - talk about quiet! This is a harder quiet to get used to because I love the noise of my job.... most of the time 😂 my work family has been some of our biggest supporters and they continue to show up for me even though I'm not working alongside them anymore. I've said it before but being surrounded by a group of mental health professionals and support staff is a blessing like no other. They just have allowed me to do what I need to do, be who I need to be, and loved me without judgement through it all. I'm so grateful for LCFS and every single staff member we have. Not having work on my plate means I can rest and take naps as I need to during the day, so I have more stamina and energy to be with our kids after school. We've been really enjoying coloring, playing board games, being outside, looking at old photos and videos, and all the cozy movie nights!
While I miss work, it's clear that I wouldn't be able to work even if I wanted to. I'm still experiencing quite a bit of confusion and disarray of my once highly organized brain - similar feelings of untreated ADHD. I start tasks and don't finish them, am constantly misplacing things, have to read and re-read because I was paying attention, etc. The amount of directions I've had to pull back out of the garbage.... I'm frustrating the hell out of myself 😂 and feeling extra thankful to Adam for helping be my ears throughout it all. This man has my own personal pharmacy down pact and I just stay out of it lol! I am endlessly grateful for our kids organized teachers and dance moms who help us keep all the things straight! We are getting really good at using Google docs creatively to keep track of all the things.
The kids have been having ups and downs, as to be expected. Overall, they are adjusting, practicing going with the flow, letting others step in and help, and most days they appear to be normal kids who aren't experiencing their mom dying. Some days have been harder and I feel really good about the way we are supporting them through those moments. Adam and I have worked hard to be the best parents we can be and are even more committed to that now. There are a couple of resources for kids we are looking in to with the help of my hospice social worker - some proactive grief work we can do as a family. We are escaping for a trip to Lutsen this weekend - definitely a God moment that they had MEA break open and, without hesitation, penciled us in for our stay. Thank you, Katy and Chris!! Fall is the only season we haven't been to the north shore, so we had to make it happen! We are surprising the kids Thursday morning with that and can't wait to escape to our favorite place for a few days!
As far as the usual life stuff that continues to go on despite terminal illness 🙃 the kitchen wall is mostly down and Adam's next step is to move some electrical so the whole wall can come down and we can begin framing in the mudroom and pantry that will take up the sitting room upstairs. We ordered all the flooring and I cannot even articulate the level of excitement I feel over ripping out these carpets!! Callie's birthday party planning is well underway and your girl got everything she asked for because... yolo!
We are also planning to do a vow renewal ceremony in November - we had intentions of doing this for our 10 year anniversary in Grand Marais next December but cancer is a time thief so we are changing it up and doing it while we can ❤️ Our first wedding was planned in three months and we kept it a surprise from everyone - we got to do it exactly how we wanted without anyone else's opinion 🤣 but, I missed out on a lot of the relational parts of wedding planning. My priorities have shifted and this time, and my relationships are a top priority for me now, so I want to be surrounded by love, light, and joy. So, we are doing it a little bigger and with a lot more support and involvement from our loved ones! Planning Callies birthday bash and a vow renewal ceremony is definitely a good distraction AND it's giving me all the practice in asking/accepting help. Go, me! 🙃😅 and go, Adam for always going along with my ideas and never stifling my big visions 🥰
We are thoroughly stocked on food - in fact my parents had to go out and buy a deep freezer themselves because all of ours are all completely full 😂 please feel free to continue using the calendar on this site to deliver fresh meals, but please refrain from bringing any extras or frozen meals right now. Or text me if you aren't sure! Easy meal prepped lunches and breakfasts have also been super helpful and will be as Adam goes back to work and I'm solo during the day a little more. We are so grateful and our kids really love having so many choices for meals like their own personal restaurant 😂
In terms of other ways to help, our dance studio, 4SDC is hosting a benefit and all proceeds will go directly to Callie's account for all future dance needs! Tickets are $20 and can be purchased at the 4SDC Front Desk. There will be raffles, a meal, entertainment and more! If you'd like to purchase a hoodie or tshirt in advance to wear at the banquet or just to have, check out my girl Lisa - she is the best and everything she creates is fantastic! https://cheekylisaspiritwear.com/search?q=4elizabeth
Thank you, truly, from the bottom of our hearts. We feel SO incredibly loved and supported. It's just beyond anything we could have imagined. We love you all so so much!
The Szybatkas ♥️
It's been so peaceful here at home, even amongst the feral wildlings 😅 and the joy I feel each day really solidified my decision to transfer to hospice. The idea of dying is really scary, and with ending active treatment, we also end all scans so I don't know what the cancer is doing. There are definitely signs of progression - increased pain in my kidneys, I can feel and see the pectoral muscle tumor growing which is also beginning to radiate pain along my armpit and lower ribs, and some lingering headaches from the surgery (hopefully just that and not anything growing back already).
As someone who likes to know all the things, this is really like the grand finale of relinquishing control... I'm really going with a bang here 🤣 but in all seriousness, I feel like I can actually breathe for the first time in a long time.
My hospice nurse is freaking amazing and she comes once per week right now. The only time I really will have to leave for an appointment is this week to have the sutures in my head removed. My hair has been growing back quickly and I'm curious what will happen with the growth and the big scar. I'm hoping it will cover but I'll have to be patient (yay, my favorite thing ever..) and see what happens 💁♀️ but I LOVE having my eyelashes back!! Best part of ending chemo hands down, ha!
I feel like this transition to hospice has also given more capacity to show up for my kids and I have been a better mom because of it. I officially retired from work - talk about quiet! This is a harder quiet to get used to because I love the noise of my job.... most of the time 😂 my work family has been some of our biggest supporters and they continue to show up for me even though I'm not working alongside them anymore. I've said it before but being surrounded by a group of mental health professionals and support staff is a blessing like no other. They just have allowed me to do what I need to do, be who I need to be, and loved me without judgement through it all. I'm so grateful for LCFS and every single staff member we have. Not having work on my plate means I can rest and take naps as I need to during the day, so I have more stamina and energy to be with our kids after school. We've been really enjoying coloring, playing board games, being outside, looking at old photos and videos, and all the cozy movie nights!
While I miss work, it's clear that I wouldn't be able to work even if I wanted to. I'm still experiencing quite a bit of confusion and disarray of my once highly organized brain - similar feelings of untreated ADHD. I start tasks and don't finish them, am constantly misplacing things, have to read and re-read because I was paying attention, etc. The amount of directions I've had to pull back out of the garbage.... I'm frustrating the hell out of myself 😂 and feeling extra thankful to Adam for helping be my ears throughout it all. This man has my own personal pharmacy down pact and I just stay out of it lol! I am endlessly grateful for our kids organized teachers and dance moms who help us keep all the things straight! We are getting really good at using Google docs creatively to keep track of all the things.
The kids have been having ups and downs, as to be expected. Overall, they are adjusting, practicing going with the flow, letting others step in and help, and most days they appear to be normal kids who aren't experiencing their mom dying. Some days have been harder and I feel really good about the way we are supporting them through those moments. Adam and I have worked hard to be the best parents we can be and are even more committed to that now. There are a couple of resources for kids we are looking in to with the help of my hospice social worker - some proactive grief work we can do as a family. We are escaping for a trip to Lutsen this weekend - definitely a God moment that they had MEA break open and, without hesitation, penciled us in for our stay. Thank you, Katy and Chris!! Fall is the only season we haven't been to the north shore, so we had to make it happen! We are surprising the kids Thursday morning with that and can't wait to escape to our favorite place for a few days!
As far as the usual life stuff that continues to go on despite terminal illness 🙃 the kitchen wall is mostly down and Adam's next step is to move some electrical so the whole wall can come down and we can begin framing in the mudroom and pantry that will take up the sitting room upstairs. We ordered all the flooring and I cannot even articulate the level of excitement I feel over ripping out these carpets!! Callie's birthday party planning is well underway and your girl got everything she asked for because... yolo!
We are also planning to do a vow renewal ceremony in November - we had intentions of doing this for our 10 year anniversary in Grand Marais next December but cancer is a time thief so we are changing it up and doing it while we can ❤️ Our first wedding was planned in three months and we kept it a surprise from everyone - we got to do it exactly how we wanted without anyone else's opinion 🤣 but, I missed out on a lot of the relational parts of wedding planning. My priorities have shifted and this time, and my relationships are a top priority for me now, so I want to be surrounded by love, light, and joy. So, we are doing it a little bigger and with a lot more support and involvement from our loved ones! Planning Callies birthday bash and a vow renewal ceremony is definitely a good distraction AND it's giving me all the practice in asking/accepting help. Go, me! 🙃😅 and go, Adam for always going along with my ideas and never stifling my big visions 🥰
We are thoroughly stocked on food - in fact my parents had to go out and buy a deep freezer themselves because all of ours are all completely full 😂 please feel free to continue using the calendar on this site to deliver fresh meals, but please refrain from bringing any extras or frozen meals right now. Or text me if you aren't sure! Easy meal prepped lunches and breakfasts have also been super helpful and will be as Adam goes back to work and I'm solo during the day a little more. We are so grateful and our kids really love having so many choices for meals like their own personal restaurant 😂
In terms of other ways to help, our dance studio, 4SDC is hosting a benefit and all proceeds will go directly to Callie's account for all future dance needs! Tickets are $20 and can be purchased at the 4SDC Front Desk. There will be raffles, a meal, entertainment and more! If you'd like to purchase a hoodie or tshirt in advance to wear at the banquet or just to have, check out my girl Lisa - she is the best and everything she creates is fantastic! https://cheekylisaspiritwear.com/search?q=4elizabeth
Thank you, truly, from the bottom of our hearts. We feel SO incredibly loved and supported. It's just beyond anything we could have imagined. We love you all so so much!
The Szybatkas ♥️
Comments
Cathywyant1
Angela Alexander
I’m holding you and your family in my heart. I hate all that cancer takes. You and your family are in my thoughts and prayers.
Jaqe c
Erin Simonson