Well, it's been a week since we got home and broke the news. One week.
It seems like much longer than that. Maybe that's how it is when you are trying to figure out "what do i do now?"
Those first few days were rough. Lots of tears spread throughout the day, with the goal of not having any of them fall in front of the boys. Mission accomplished there.
Ben and I cried together in the evening - many times the only time we can really talk about things without worrying about the boys hearing us is at night in bed. He has a tendency to bottle his emotions and definitely tries to be strong and "controlled" for the boys' sake - so I was relieved to have him cry along with me. Everyone needs that emotional release every now and then. Especially when you are dealing with SO MUCH.
The response to my blog post was overwhelming, humbling, amazing, beautiful, heartwarming...and elicited many tears. Sincere thanks to everyone who commented with words of comfort, support, and love.
Knowing that I have so many people praying on my behalf is really encouraging.
So - what NOW, right?
Well, as odd as it sounds and as odd as it feels for me to say, i'm actually doing okay. My dad stopped over today and asked "how are you doing?", and I said "honestly...i'm fine". That's not to say that I'm fine with what is happening, because i certainly am NOT fine with it....but overall....i really do feel "fine". I still feel really good. No pain. No nausea. Those are things for me to be thankful about every day. With all the "if onlys" i thought about on the way home from Mayo and the days following i also decided to try a few things - because really, why not? I am trying very hard to limit my sugar intake. I know cancer cells respond and thrive on sugar. I mean, when I have a PET scan - they cut you off from carbs 18 hours in advance and then inject you with a glucose solution because the cancer cells have been starved of sugar for a while and then they just suck it right up. I've been doing pretty good in that regard. Definitely not perfect, but better.
I've also started taking a few supplements. I've never been very good about taking stuff, but have committed myself to a few. Turmeric is one. The others are some things I got from my friend Erin who has been helping me throughout this whole journey and I'm not sure if I will ever be able to thank her enough for her love and support (you can check out her FB page Eden Restored), and the other thing is something that really isn't a supplement but my cousin Hailey sent me a blog with some interesting info so I figured what have i got to lose by trying it? Nothing that I can think of. I mean, i take chemo in hopes that it will help and it makes me feel HORRIBLE. Taking all of these things (which really isn't that much) makes me feel...no different.
And what if all of this results in nothing? No change? Okay. At least i can get some of the "in onlys" off my mind.
I'm getting more comfortable going out in public. Not to say that it isn't hard and a little terrifying because there are a lot of sympathetic looks, hugs, people letting me know they are thinking of us and praying for us and I never quite know if/when i'm going to break down in tears. And omgoodness do NOT feel at all bad if you see me and give me a hug, let me know you are praying, etc. and I start crying. It's just how it is right now.
I'm doing yoga (at home) and LOVING it. I'm also trying to do a little cardio and HATING it. Holy cow i'm out of shape. We bought an airdyne bike a while ago when Ben was told he needed to get some exercise to get his blood pressure under control. I remember looking at the bike online and specifically asking him "if we buy this are you actually going to use it?". I believe his response was very non-committal. I ordered it anyway. You will be shocked to know that he used it maybe 4 times and then it's been sitting in the basement. I mentioned that I'd like to work on my cardio, but don't really want to go down to the basement to ride the bike, so he and Sammy brought it upstairs for me. I've only done it twice but that was enough for me to give it the nickname "the torture wheel".
Mostly trying to be thankful for all of the little things every day.
Peace I leave with you;
My Peace I give you.
I do not give to you as the world gives.
Do not let your hearts be troubled and do not be afraid.
John 14:27
Wednesday, October 30, 2019
Thursday, October 24, 2019
why, why, why...
Well, we are back from Mayo. I wish we were back with good news, but unfortunately so far good news isn't our "story". Bad news seems to be plaguing us on this journey.
All of those decisions I was worried about have become a mute point because the scans showed that the cancer has spread. There are a couple of spots on my liver and 2 lymph nodes that show cancer as well.
I can say that we were very shocked and heartbroken by the news. Neither one of us was really sure how to respond or react. Dumbfounded.
The ride home was spent trying to wrap our heads around everything.
I feel like I've gone through the gamut of emotions in processing the news, but honestly, disbelief is the one that seems to be sticking - with sadness and anger not far behind. We were upfront with the boys, because i feel like they need to know what's going on. I hate putting this information on their shoulders cause it's a heavy burden to bear, but I don't want them to be blind as to what is going on. Charlie summed it up best last night between sobs..."why YOU? why US?" to which I could only respond "i don't know buddy".
I'm asking myself those same why questions, even though there is no answer.
I will say I did spend a better part of the trip home wondering "if I only did this or that then maybe...", but also knowing that if only i had done 'this' or 'that' then maybe the outcome would still be the same. And I don't think beating myself up about things is going to help matters any. It's hard to not feel some responsibility tho. Is that weird? I feel guilty for having this stupid disease. For putting my family through having to deal with me having this disease. Mostly for the boys having to bear this burden. That's the worst. I hate it so much for them. Charlie goes to the guidance counselor at school b/c his mind wanders and then he starts to think about things and all of the what-ifs and he worries and gets anxious thinking about it all. My 13 year old shouldn't have to worry about his mom dying.
But he does.
And I do too.
That's a shitty thing to have in the back of your mind. Wondering how long you have to live? I mean...all of us are going to die at some point, but for most of us it's not something we think about because without the presence of disease it seems so far away and not front and center. The doctor talked about chemo to "prolong your life", which I told Ben makes me think "well, i'm going to die from this....but when?"
Prolong your life. Ugh.
For now the game plan is to hold tight. We go back up in December for more scans and possible biopsies. The oncologist wants to see if there is some genetic mutation that would indicate a certain type of treatment that would work better than others. He also knows that I don't tolerate chemo very well, and doesn't want to put me through that if it's not something that will be effective. After the next appointments there will be more chemo for sure...we just aren't sure what it will be.
So - I have cried a few tears and I'm sure will cry many more. But i woke up today, had my coffee, did yoga, worked on some things around the house, went to conferences, paid some bills....life goes on in spite of everything.
I will say this...it is hard to reconcile all of this with my faith. I know Ben is really struggling with his relationship with God these days, and I worry about the boys too. Charlie is going through confirmation right now and reading the book of Luke. There's a lot of stories of Jesus healing sick people in that book. Makes it difficult to reconcile why He doesn't seem to be healing me? Taking this sickness away? Why cancer is even a THING? Charlie said last night "millions and millions of dollars going to research cancer and they STILL can't figure it out?"
Right?
And clinging to hope seems to be backfiring on me every time! I was so hopeful going into these last appointments. Getting your hopes dashed over and over makes having hope a bit difficult.
But I will keep praying. I will keep the conversation with Him going. I will try to remain as faith-full as I can.
Be STRONG and COURAGEOUS for the Lord your God is with you. Joshua 1:9
All of those decisions I was worried about have become a mute point because the scans showed that the cancer has spread. There are a couple of spots on my liver and 2 lymph nodes that show cancer as well.
I can say that we were very shocked and heartbroken by the news. Neither one of us was really sure how to respond or react. Dumbfounded.
The ride home was spent trying to wrap our heads around everything.
I feel like I've gone through the gamut of emotions in processing the news, but honestly, disbelief is the one that seems to be sticking - with sadness and anger not far behind. We were upfront with the boys, because i feel like they need to know what's going on. I hate putting this information on their shoulders cause it's a heavy burden to bear, but I don't want them to be blind as to what is going on. Charlie summed it up best last night between sobs..."why YOU? why US?" to which I could only respond "i don't know buddy".
I'm asking myself those same why questions, even though there is no answer.
I will say I did spend a better part of the trip home wondering "if I only did this or that then maybe...", but also knowing that if only i had done 'this' or 'that' then maybe the outcome would still be the same. And I don't think beating myself up about things is going to help matters any. It's hard to not feel some responsibility tho. Is that weird? I feel guilty for having this stupid disease. For putting my family through having to deal with me having this disease. Mostly for the boys having to bear this burden. That's the worst. I hate it so much for them. Charlie goes to the guidance counselor at school b/c his mind wanders and then he starts to think about things and all of the what-ifs and he worries and gets anxious thinking about it all. My 13 year old shouldn't have to worry about his mom dying.
But he does.
And I do too.
That's a shitty thing to have in the back of your mind. Wondering how long you have to live? I mean...all of us are going to die at some point, but for most of us it's not something we think about because without the presence of disease it seems so far away and not front and center. The doctor talked about chemo to "prolong your life", which I told Ben makes me think "well, i'm going to die from this....but when?"
Prolong your life. Ugh.
For now the game plan is to hold tight. We go back up in December for more scans and possible biopsies. The oncologist wants to see if there is some genetic mutation that would indicate a certain type of treatment that would work better than others. He also knows that I don't tolerate chemo very well, and doesn't want to put me through that if it's not something that will be effective. After the next appointments there will be more chemo for sure...we just aren't sure what it will be.
So - I have cried a few tears and I'm sure will cry many more. But i woke up today, had my coffee, did yoga, worked on some things around the house, went to conferences, paid some bills....life goes on in spite of everything.
I will say this...it is hard to reconcile all of this with my faith. I know Ben is really struggling with his relationship with God these days, and I worry about the boys too. Charlie is going through confirmation right now and reading the book of Luke. There's a lot of stories of Jesus healing sick people in that book. Makes it difficult to reconcile why He doesn't seem to be healing me? Taking this sickness away? Why cancer is even a THING? Charlie said last night "millions and millions of dollars going to research cancer and they STILL can't figure it out?"
Right?
And clinging to hope seems to be backfiring on me every time! I was so hopeful going into these last appointments. Getting your hopes dashed over and over makes having hope a bit difficult.
But I will keep praying. I will keep the conversation with Him going. I will try to remain as faith-full as I can.
Be STRONG and COURAGEOUS for the Lord your God is with you. Joshua 1:9
Monday, October 21, 2019
Heading back to Mayo
Today is here. I've been thinking about this day for the past 5 weeks - but also trying very hard not to think of this day for the past 5 weeks. On the one hand, it's Charlie's 13th birthday. My youngest is now a teenager. Why does time have to fly so quickly?
When the boys were 6, 4, and 1 1/2 we took a vacation to a resort in Minnesota. On a rainy day we went to the bowling alley in the little town nearby. As we were getting things set up and dealing with the chaos that comes with 3 small children, another family walked in to bowl away their rainy day. While the dad was up paying, the mom walked down to the lanes with her 3 boys...all teenagers and taller than her. That moment struck me then and sticks with me so vividly even now. I remember stopping at that moment and thinking "some day that will be me". And being so happy with my "babies" at the time - while thinking I couldn't possibly imagine what life would be like when the boys were that old.
And here we are.
I am now "that mom". Tyler and Sammy are both taller than me, and I have no doubt that Charlie will pass me by in the next few years. They are all teenagers. Tyler will graduate in the spring. And that moment is still so clear in my mind. I couldn't have imagined then what life would throw our way. Crazy.
So...here we are. I finished radiation about 5 weeks ago. Moved out of my apartment - which was very nice, but i was so happy to get out of there. My doctor told me to go home, rest, enjoy not having treatment, and gain some weight. Check, check, check, aaaaannnd check.
I have had a wonderful break. I've been feeling so good while i've been home. No pain, very little nausea, decent energy. I've been enjoying feeling normal for a while and doing all the normal things I used to do. I even was able to take a few classes at the fitness center! I am 100% out of shape so that is hard, but it was nice to be back there, to see familiar faces, and to get a little exercise. I've done a billion loads of laundry, picked up kids from football practices, gotten to see Charlie's games and Tyler and Sammy's last home XC meet. We had family pictures, I had a wonderful weekend with my high school girlfriends, and just finished a fun family weekend to UNI (also celebrating Charlie's birthday).
And i have gained enough weight that my pants are all feeling a bit snug. :)
I have thanked God every night for another great day of feeling like my old self. I know the boys have also loved having their "old mom" back. It truly has been a blessing and I have cherished every moment.
And during this time I've been trying hard to not think about today and the next few days. We head back to Rochester this afternoon. I have a CT scan tomorrow and consultations with intestinal teams. On Wednesday it's the PET/MRI and consults with the surgeon. (we also head back next week for appointments with vascular surgery)
There are big decisions to be made in the next couple of days, and I honestly still have no idea how we are going to make them. We are thankful that Dr Truty (surgeon) has even considered taking me on as a patient. It's a big, big, scary surgery - there are a lot of "ifs" and it would definitely be life changing for me. But we are thankful that we at least have this option in front of us.
The next few days are going to be very trying and difficult and, to be honest, a bit terrifying.
We certainly appreciate any and all prayers for my scans, for the results, for the doctors, for the boys and the rest of my family, and for the future.
I have a book called "50 Days of Hope - Daily inspiration for your journey through cancer"
There are a number of prayers that are really good.
Father, I feel a little lost right now. Please guide me in all the decisions to be made, and help me to trust Your truth more than my feelings.
Lord, thank you for doctors and nurses and researchers who are trying to cure cancer. I ask today that Your super-natural healing power would be released to heal the cancer in each cell that you created.
Dear Lord, I'm so disappointed that this cancer has touched our family. It feels so unfair. Please help me to accept that life has been unfair to us but still to believe that You will be faithful to us. Please help me to develop a relationship with You apart from my circumstances and to learn to trust You despite the unfairness of life.
For I am the Lord your God
who takes hold of your right hand
and says to you, Do not fear;
I will help you. Isaiah 41:13
When the boys were 6, 4, and 1 1/2 we took a vacation to a resort in Minnesota. On a rainy day we went to the bowling alley in the little town nearby. As we were getting things set up and dealing with the chaos that comes with 3 small children, another family walked in to bowl away their rainy day. While the dad was up paying, the mom walked down to the lanes with her 3 boys...all teenagers and taller than her. That moment struck me then and sticks with me so vividly even now. I remember stopping at that moment and thinking "some day that will be me". And being so happy with my "babies" at the time - while thinking I couldn't possibly imagine what life would be like when the boys were that old.
And here we are.
I am now "that mom". Tyler and Sammy are both taller than me, and I have no doubt that Charlie will pass me by in the next few years. They are all teenagers. Tyler will graduate in the spring. And that moment is still so clear in my mind. I couldn't have imagined then what life would throw our way. Crazy.
So...here we are. I finished radiation about 5 weeks ago. Moved out of my apartment - which was very nice, but i was so happy to get out of there. My doctor told me to go home, rest, enjoy not having treatment, and gain some weight. Check, check, check, aaaaannnd check.
I have had a wonderful break. I've been feeling so good while i've been home. No pain, very little nausea, decent energy. I've been enjoying feeling normal for a while and doing all the normal things I used to do. I even was able to take a few classes at the fitness center! I am 100% out of shape so that is hard, but it was nice to be back there, to see familiar faces, and to get a little exercise. I've done a billion loads of laundry, picked up kids from football practices, gotten to see Charlie's games and Tyler and Sammy's last home XC meet. We had family pictures, I had a wonderful weekend with my high school girlfriends, and just finished a fun family weekend to UNI (also celebrating Charlie's birthday).
And i have gained enough weight that my pants are all feeling a bit snug. :)
I have thanked God every night for another great day of feeling like my old self. I know the boys have also loved having their "old mom" back. It truly has been a blessing and I have cherished every moment.
And during this time I've been trying hard to not think about today and the next few days. We head back to Rochester this afternoon. I have a CT scan tomorrow and consultations with intestinal teams. On Wednesday it's the PET/MRI and consults with the surgeon. (we also head back next week for appointments with vascular surgery)
There are big decisions to be made in the next couple of days, and I honestly still have no idea how we are going to make them. We are thankful that Dr Truty (surgeon) has even considered taking me on as a patient. It's a big, big, scary surgery - there are a lot of "ifs" and it would definitely be life changing for me. But we are thankful that we at least have this option in front of us.
The next few days are going to be very trying and difficult and, to be honest, a bit terrifying.
We certainly appreciate any and all prayers for my scans, for the results, for the doctors, for the boys and the rest of my family, and for the future.
I have a book called "50 Days of Hope - Daily inspiration for your journey through cancer"
There are a number of prayers that are really good.
Father, I feel a little lost right now. Please guide me in all the decisions to be made, and help me to trust Your truth more than my feelings.
Lord, thank you for doctors and nurses and researchers who are trying to cure cancer. I ask today that Your super-natural healing power would be released to heal the cancer in each cell that you created.
Dear Lord, I'm so disappointed that this cancer has touched our family. It feels so unfair. Please help me to accept that life has been unfair to us but still to believe that You will be faithful to us. Please help me to develop a relationship with You apart from my circumstances and to learn to trust You despite the unfairness of life.
For I am the Lord your God
who takes hold of your right hand
and says to you, Do not fear;
I will help you. Isaiah 41:13
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