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
Sunday, September 15, 2019
an update
It's been a while. I keep posting "updates" on Facebook since more people seem to use it and check it regularly. I've been thinking about this blog a lot lately though, so here I am.
I made it through the radiation treatments and time away from home. It actually went much more quickly than I thought it would. I'm happy to not have to go back up there, and very happy not to be in the apartment anymore. It was a really nice place; clean, modern, spacious - nothing to complain about for sure. However, it smelled. I'm super sensitive to smells and whoever lived there before us must have used Gain laundry detergent or dryer sheets or something bc the minute you walked in the door you were hit with a wall of scent. Or, at least I was. I highly doubt it bothered anyone else, but it made me nauseated the
minute i walked in the door. We tried having the windows open as much as possible and got some candles, but nothing seemed to work.
In any case, i won't miss that.
Now i'm home for about 4-6 weeks to let my body recover from radiation and chemo. My oncologist advised me to just enjoy being home and not having any kind of treatments. I still struggle with nausea (ugh) and staying hydrated is proving difficult. Nothing sounds good to drink and I feel like when I do drink something i feel like it makes me more nauseated. No fun.
I'm hoping to be more active while i'm home, if the pain will stay away. And by "active" I mean like taking a stroll/walk every now and then.
And trying not to think about all of the "what nexts". I know for sure I will have to go up for more scans (the whole battery) so the surgeons can look at them and decide if they can do anything. It's really scary for me to think about, so I try to keep my mind off it. There's a lot of "what ifs" when I think about the what nexts...
I'm happy to be able to be here to enjoy the boys' activities. Charlie will have his first football game this week. I will be able to go watch the boys run XC this week and be here for the homecoming festivities. All good stuff.
Trying to plan for family pictures (ie: trying to figure out what the heck we will be wearing) as well as Tyler's senior pictures.
Charlie was on his phone the other day and said "mom, have you heard of this?". It was some article about something in a certain wasp that supposedly can fight cancer. He said "i see stuff like this all the time".
Totally broke my heart. I hate that at the age of 12 he's reading articles about possible cancer fighters and is already alarmed that the pharmaceutical companies are more interested in money than finding a cure (yep, he actually said that). I wish he didn't have to have this weighing on him. It's been weighing on ME that he's been thinking about stuff like that. Takes me to the "what ifs" and what he might have to deal with. Hard not to think about all of it.
Another thing that's been weighing on me for some reason is church.
I know, right?
Well, the thing is...we just don't go. I'm not sure why it's not a priority for me, but for some reason it's just not. I've still been working on reading the bible, still praying, still feel secure in my relationship with God...but church? Just can't seem to get there. Charlie will be going through confirmation soon, and part of that is church attendance....so we will have to be better about getting there. Makes me feel even more guilt about not going!
My devotional this morning started out like this:
Rest in Me, my child. This time devoted to Me is meant to be peaceful, not stressful. You don't have to perform in order to receive My love.
I love when stuff like that happens. I haven't picked up my devotional in a few weeks, and this is how today's passage began? I know God could hear what was on my heart and sent me to the devotional this morning. I needed that.
Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You. Psalm 25:5
I made it through the radiation treatments and time away from home. It actually went much more quickly than I thought it would. I'm happy to not have to go back up there, and very happy not to be in the apartment anymore. It was a really nice place; clean, modern, spacious - nothing to complain about for sure. However, it smelled. I'm super sensitive to smells and whoever lived there before us must have used Gain laundry detergent or dryer sheets or something bc the minute you walked in the door you were hit with a wall of scent. Or, at least I was. I highly doubt it bothered anyone else, but it made me nauseated the
minute i walked in the door. We tried having the windows open as much as possible and got some candles, but nothing seemed to work.
In any case, i won't miss that.
Now i'm home for about 4-6 weeks to let my body recover from radiation and chemo. My oncologist advised me to just enjoy being home and not having any kind of treatments. I still struggle with nausea (ugh) and staying hydrated is proving difficult. Nothing sounds good to drink and I feel like when I do drink something i feel like it makes me more nauseated. No fun.
I'm hoping to be more active while i'm home, if the pain will stay away. And by "active" I mean like taking a stroll/walk every now and then.
And trying not to think about all of the "what nexts". I know for sure I will have to go up for more scans (the whole battery) so the surgeons can look at them and decide if they can do anything. It's really scary for me to think about, so I try to keep my mind off it. There's a lot of "what ifs" when I think about the what nexts...
I'm happy to be able to be here to enjoy the boys' activities. Charlie will have his first football game this week. I will be able to go watch the boys run XC this week and be here for the homecoming festivities. All good stuff.
Trying to plan for family pictures (ie: trying to figure out what the heck we will be wearing) as well as Tyler's senior pictures.
Charlie was on his phone the other day and said "mom, have you heard of this?". It was some article about something in a certain wasp that supposedly can fight cancer. He said "i see stuff like this all the time".
Totally broke my heart. I hate that at the age of 12 he's reading articles about possible cancer fighters and is already alarmed that the pharmaceutical companies are more interested in money than finding a cure (yep, he actually said that). I wish he didn't have to have this weighing on him. It's been weighing on ME that he's been thinking about stuff like that. Takes me to the "what ifs" and what he might have to deal with. Hard not to think about all of it.
Another thing that's been weighing on me for some reason is church.
I know, right?
Well, the thing is...we just don't go. I'm not sure why it's not a priority for me, but for some reason it's just not. I've still been working on reading the bible, still praying, still feel secure in my relationship with God...but church? Just can't seem to get there. Charlie will be going through confirmation soon, and part of that is church attendance....so we will have to be better about getting there. Makes me feel even more guilt about not going!
My devotional this morning started out like this:
Rest in Me, my child. This time devoted to Me is meant to be peaceful, not stressful. You don't have to perform in order to receive My love.
I love when stuff like that happens. I haven't picked up my devotional in a few weeks, and this is how today's passage began? I know God could hear what was on my heart and sent me to the devotional this morning. I needed that.
Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You. Psalm 25:5
Friday, July 5, 2019
when....
I've been putting updates on Facebook - since it seems like more people check there more often and it's easy for me to post from the car on the way home from Rochester - so i've been neglecting this blog a bit. However, this is always a good way for me to just say what's on my mind and gives me a little mental release. I need to remember that for myself.
So, recent trip to Mayo was okay. Wouldn't it be nice to be able to say it was great? That we got amazing news? I know my kids are hoping that every time. I hate having to tell them - the tumor is still there. i still have cancer.
Anyway, everything is the same scan-wise, and the dr feels like it's time to move on to the "next step" in treatment which will be radiation/chemo. We will get scheduled for appointments with radiology sometime in the next few weeks. There will be a bit of "set up" work, and then we will get rolling. It will be 5 weeks of daily radiation along with a pill form of chemo. I'm not overly concerned with radiation, but the daily chemo scares the bejeebers out of me.
The other thing is that I might have to move up to Rochester for 5 weeks. My doctor acted like that was what he personally would want, but will leave that up to the radiologist to decide. Not the ideal situation for me, but I know I can do it (like all of this....i know i can, i just wish i didn't have to).
In the meantime, I have been feeling really well. I have some pain every now and then, but nothing that knocks me down too much. My energy level is pretty good. I can go for walks and keep up with the dog - which if you know my dog that's not an easy feat. I'm hoping to maybe start up with some yoga soon. My body is so stiff and tight, i could use some stretching! And on the definite "plus" side, I don't have to have the heavy hitting chemo anymore. To be honest, that was the one thing I was hoping for from the Mayo visit. Please, just no more chemo and sickness.
Charlie asked me a question a few weeks ago that threw me for a loop. It was a simple question that turned pretty profound to me very quickly.
He asked, "Mom...when you are cured from this, will you go back to work?"
It stopped me dead in my tracks. I was speechless for a minute. Not about thinking about going back to work....but the fact that he so matter-of-factly said "when you are cured..."
I had to stop myself from saying "well....if i get cured..."
In his head it is so clearly a question of WHEN. There's no IF.
And it got me to thinking....maybe I need a bit of an attitude adjustment. Maybe I should start thinking more in terms of when and not if.
It's definitely something that will take some work. I am always trying to focus on the positives and keep a general positive attitude. But changing an if to a when is no small task.
Challenge accepted.
Trust in the Lord with all your heart, and lean not on your own understanding. Proverbs 3:5
When I am afraid, I put my trust in you
In God, whose word I praise --
in God I trust and am not afraid.
Psalm 56:3-4
So, recent trip to Mayo was okay. Wouldn't it be nice to be able to say it was great? That we got amazing news? I know my kids are hoping that every time. I hate having to tell them - the tumor is still there. i still have cancer.
Anyway, everything is the same scan-wise, and the dr feels like it's time to move on to the "next step" in treatment which will be radiation/chemo. We will get scheduled for appointments with radiology sometime in the next few weeks. There will be a bit of "set up" work, and then we will get rolling. It will be 5 weeks of daily radiation along with a pill form of chemo. I'm not overly concerned with radiation, but the daily chemo scares the bejeebers out of me.
The other thing is that I might have to move up to Rochester for 5 weeks. My doctor acted like that was what he personally would want, but will leave that up to the radiologist to decide. Not the ideal situation for me, but I know I can do it (like all of this....i know i can, i just wish i didn't have to).
In the meantime, I have been feeling really well. I have some pain every now and then, but nothing that knocks me down too much. My energy level is pretty good. I can go for walks and keep up with the dog - which if you know my dog that's not an easy feat. I'm hoping to maybe start up with some yoga soon. My body is so stiff and tight, i could use some stretching! And on the definite "plus" side, I don't have to have the heavy hitting chemo anymore. To be honest, that was the one thing I was hoping for from the Mayo visit. Please, just no more chemo and sickness.
Charlie asked me a question a few weeks ago that threw me for a loop. It was a simple question that turned pretty profound to me very quickly.
He asked, "Mom...when you are cured from this, will you go back to work?"
It stopped me dead in my tracks. I was speechless for a minute. Not about thinking about going back to work....but the fact that he so matter-of-factly said "when you are cured..."
I had to stop myself from saying "well....if i get cured..."
In his head it is so clearly a question of WHEN. There's no IF.
And it got me to thinking....maybe I need a bit of an attitude adjustment. Maybe I should start thinking more in terms of when and not if.
It's definitely something that will take some work. I am always trying to focus on the positives and keep a general positive attitude. But changing an if to a when is no small task.
Challenge accepted.
Trust in the Lord with all your heart, and lean not on your own understanding. Proverbs 3:5
When I am afraid, I put my trust in you
In God, whose word I praise --
in God I trust and am not afraid.
Psalm 56:3-4
Monday, June 3, 2019
no chemo again
Most of you probably know since I posted it on FB, but I couldn't have chemo again last week. WBC was up, but still not high enough for chemo. Double edged sword again...but choosing to focus on the positives (thanks to some prompting from my friend Erin). I'm feeling good, and definitely enjoying it! Baseball games, time with friends and family, time on the boat, a little more energy, not being sick...can't complain about any of that! Trying to stay focused on trusting God and His timing and the many blessings he has showered upon me.
I gained 2 lbs! Something to celebrate. Hoping to put on a few more before Thursday. My appetite is HEALTHY, so that's also something to be happy about. Still trying to take it easy on the sugar (which is definitely harder some days than others). I wish I was putting on some muscle, but I will embrace these little pockets of fat i'm putting on. I look at these models on tv and in ads who are so thin (i feel gross and they're smaller than me!) - and all I can think is "i sure hope you don't get sick cause there's nothing for you to rely on if you start dropping weight". Have a little in your reserve tank people cause you just never know.
But I trust in you, O Lord;
I say, "My times are in Your hands"
Psalm 31: 14-15
I gained 2 lbs! Something to celebrate. Hoping to put on a few more before Thursday. My appetite is HEALTHY, so that's also something to be happy about. Still trying to take it easy on the sugar (which is definitely harder some days than others). I wish I was putting on some muscle, but I will embrace these little pockets of fat i'm putting on. I look at these models on tv and in ads who are so thin (i feel gross and they're smaller than me!) - and all I can think is "i sure hope you don't get sick cause there's nothing for you to rely on if you start dropping weight". Have a little in your reserve tank people cause you just never know.
But I trust in you, O Lord;
I say, "My times are in Your hands"
Psalm 31: 14-15
Monday, May 20, 2019
ups and downs
Well, this past round was BRUTAL - and i mean ALL CAPS brutal. I reacted. Which means i felt my face getting really hot and then my stomach started cramping. They stopped the drugs...i had horrible awful cramps for idk how long (my mom said it took about an hour for everything to "calm down")...and then they started up again. Yup. I can remember thinking as I was writhing in pain (quite literally) that I so wished my mom wasn't there to see all of this. How hard that must be.
And then, I spiked a fever and my heart rate went up. So I went straight from oncology to the ER, where I got to spend 6+ hours. (along with my rockstar parents who sat there with me) I got to the hospital around 8:30 that morning and went home a bit past midnight. Fun, right? No. Really.Not.Fun.
Spent the next day (my birthday) being very sick and Saturday still not feeling so hot and Sunday not feeling so great either. Sunday was depressing. I just hate feeling like that so SO much and it really brings me down. Ben was having a tough day as well. We talked and shed some tears. He struggles cause he tries to be the positive reinforcement around here. For me and the boys. That's a tough gig. He needs a good cry every now and then - even tho that's really hard for him. But it does help. I know I need it more than every now and then. And it's hard for me too cause somehow it feels like i'm "giving in" to negative feelings, but i need to think of it more like "getting it out". No matter. It's just hard no matter what and this whole thing sucks.
Today was better. Well...it started off pretty awful cause my dog decided to pee all over the den. The SMELL woke me up at 5am. Yeah. Dis.Gus.Ting. Spent about 1/2 hour scrubbing floors to try to clean it up. Bad thing is, we have wood floors. Kinda sucks it all in. EW. Put out a diffuser with peppermint oil (supposed to be clarifying). Went back to bed and did manage to fall back asleep for a little while.
Cleaned the kitchen and threw in a load of laundry and then felt like I needed a nap from all that exertion. I get tired very easily.
Tonight was baseball baseball baseball. Literally. All 3 boys played tonight. My mom came with me in case i needed to be dropped off close to the field, but I managed to get to and fro okay. And that's something cause she's a "fair weather" fan...and tonight wasn't fair weather. BRR! We went to the JV game and left early to get to Charlie's game. Of course that meant that Sammy made a double play and hit a walk off to end the game...go figure. Charlie cracks me up when he plays. He's such a social kid - loves to pitch and catch so he can interact with every player from the other team. After his game a quick stop home for charlie to put on warm clothes and for me to throw together some PB&Js for Sammy (and Charlie and me!) then back to the field for the varsity game. Needless to say, it was a long night...but I felt so GOOD. Doing all that normal stuff just makes me feel so much better. I'm thankful my stomach felt okay and my guts held it together so I could do all of it.
And now I'm up past midnight cause uniforms need to be washed (more games tomorrow).
And i'm totally fine with that.
Give thanks to the Lord, for He is good;
His love endures forever.
Psalm 107:1
And then, I spiked a fever and my heart rate went up. So I went straight from oncology to the ER, where I got to spend 6+ hours. (along with my rockstar parents who sat there with me) I got to the hospital around 8:30 that morning and went home a bit past midnight. Fun, right? No. Really.Not.Fun.
Spent the next day (my birthday) being very sick and Saturday still not feeling so hot and Sunday not feeling so great either. Sunday was depressing. I just hate feeling like that so SO much and it really brings me down. Ben was having a tough day as well. We talked and shed some tears. He struggles cause he tries to be the positive reinforcement around here. For me and the boys. That's a tough gig. He needs a good cry every now and then - even tho that's really hard for him. But it does help. I know I need it more than every now and then. And it's hard for me too cause somehow it feels like i'm "giving in" to negative feelings, but i need to think of it more like "getting it out". No matter. It's just hard no matter what and this whole thing sucks.
Today was better. Well...it started off pretty awful cause my dog decided to pee all over the den. The SMELL woke me up at 5am. Yeah. Dis.Gus.Ting. Spent about 1/2 hour scrubbing floors to try to clean it up. Bad thing is, we have wood floors. Kinda sucks it all in. EW. Put out a diffuser with peppermint oil (supposed to be clarifying). Went back to bed and did manage to fall back asleep for a little while.
Cleaned the kitchen and threw in a load of laundry and then felt like I needed a nap from all that exertion. I get tired very easily.
Tonight was baseball baseball baseball. Literally. All 3 boys played tonight. My mom came with me in case i needed to be dropped off close to the field, but I managed to get to and fro okay. And that's something cause she's a "fair weather" fan...and tonight wasn't fair weather. BRR! We went to the JV game and left early to get to Charlie's game. Of course that meant that Sammy made a double play and hit a walk off to end the game...go figure. Charlie cracks me up when he plays. He's such a social kid - loves to pitch and catch so he can interact with every player from the other team. After his game a quick stop home for charlie to put on warm clothes and for me to throw together some PB&Js for Sammy (and Charlie and me!) then back to the field for the varsity game. Needless to say, it was a long night...but I felt so GOOD. Doing all that normal stuff just makes me feel so much better. I'm thankful my stomach felt okay and my guts held it together so I could do all of it.
And now I'm up past midnight cause uniforms need to be washed (more games tomorrow).
And i'm totally fine with that.
Give thanks to the Lord, for He is good;
His love endures forever.
Psalm 107:1
Subscribe to:
Posts (Atom)