I have mentioned it before, but really....Golden Girls. If you haven't checked out the re-runs i highly recommend. Sofia. Just sayin.
I was able to top off my bucket again last week with a visit to Algona to spend time with my sisters. Had a great lunch (if you've never been to Algona - it's worth a trip to go to The Chocolate Season for lunch and then buy some of their amazingly beautiful chocolates) and shopped at a really cute boutique. I bought overalls! I am very excited about them. My mom has always told me that you only "have" to do a trend once (and really you don't have to do them at all). Everything comes back around. There are quite a few styles right now that I cannot get behind...the high rise mom jeans and cropped tops? Uh...no thanks.
But overalls? Sign me up.
This week I am looking forward to really filling my bucket. Two of my dearest friends will be in town (one coming in from Alaska!). There is always amazing conversation, laughter, and so much love. The time I spend with them is so precious. Which got me thinking....
...the time I spend with all of my friends is so precious. If i sit and think about all of the incredible people in my life...the word "blessed" just doesn't seem big enough. I get cards and gifts and many times my mom will ask "how do you know that person?" And sometimes its just from a random meeting, or a friend of a friend, or someone who took classes from/with me - but I truly consider all of them - all of YOU - true friends. Not just someone i met once, or "just" an acquaintance. I don't know how or why but God has brought all of these amazing people into my life at one point or another - and there is so much kindness and goodness and intelligence and joy and sadness and heartbreak and LOVE shared between all of us. I have said it before...to sit and think about it is pretty overwhelming - and truly amazing. Spending time with each and every one of you has enhanced my life tremendously. There are no words to thank you enough, but know that i have very genuine love in my heart for each of you.
My devotional today said this (read as though Jesus is speaking):
As I fill you with My Love, you become a reservoir of love, overflowing into the lives of other people.
I mean.
And now these three remain; faith, hope, and LOVE. But the greatest of these is Love.
1 Corinthians 13:13
* ALSO - my friend Rhonda (who I thank God for every day and have wondered frequently what I ever did in my life to deserve her incredible friendship) posted a comment on my last blog post with an amazing scripture from Matthew. Highly recommend checking it out.
Sunday, March 17, 2019
Monday, March 11, 2019
daylight and sleepless nights
I haven't slept well the past couple of nights. I'd blame daylight savings, but it started the night we moved the clocks forward so I don't feel like that's the reason. And while that whole time switch does usually mess me up for about a week, i will say that last night it was so nice to be sitting at the table at 6:30 and still have it light outside. All this to say, i don't mind daylight savings. I'm all for saving as much daylight as we can for the DAY. I wish we didn't have to fall back...just keep it as is.
Anyway, I didn't sleep well that night so last night i was exhausted when i got into bed at 10:30. And I laid there...and laid there...and laid there...
So then, of course, i start thinking "why in the heck can't I sleep? I'm so tired!" I'm not feeling stressed, or worried (i don't think), so as I laid there I just started thinking about everything that's on my mind (that might be keeping me awake):
* I'm taking a road trip to Chicago in a few weeks (super excited!! I'll blog about that another day)
* I got appointments scheduled up at Mayo Clinic for the last week in April and it's a lot
* I have 2 more chemo treatments to survive
* I want to do yoga tomorrow but will I be too stupid tired?
* I need to remember to make soup and deliver to a friend
* Stop at Sugar Bowl and pick up something on hold
* Drink all my carrot juice
* Back to thinking about Mayo Clinic and decisions....
And then i just started to cry. Like I said, i don't feel like i've been stressed or worried...but obviously the whole decision-making aspect of my illness is in the back of my mind always. I'm praying the carrot juice will somehow shrink the tumor for me so I don't have to utilize surgery. It's not my favorite option, even though i'm so glad it IS an option. It's a big, scary, BIG surgery. I think the part that gets me is that I don't even know HOW i will decide (i should say "we" but ultimately i think it's my choice). How do you make the choice to possibly put your life at perhaps greater risk - for what might be the greater good? The surgeon is confident and positive he can do this surgery. BUT. Of course...but....he can't speculate on my recovery, or that things will all work as planned post-surgery. We're messing with major organs and blood vessels here.
And all of this sounds like i'm stressed and worried, right? I still contend that I'm not. It doesn't feel like either of those things...it mostly just feels like uncertainty. Wondering how on earth i will ever be able to make that decision.
And then -
A good friend gave me a devotional that I read every morning. This was today's devotional:
WALK BY FAITH, NOT BY SIGHT. As you take steps of faith, depending on Me, I will show you how much I can do for you. If you live your life too safely, you will never know the thrill of seeing Me work through you. When I gave you My Spirit, I empowered you to live beyond your natural ability and strength. That's why it is so wrong to measure your energy level against the challenges ahead of you. The issue is not your strength but Mine, which is limitless. By walking close to Me, you can accomplish My purposes in My strength.
I put that part in bold because WOW. I have read it at least 5 times.
In the back of my head i've been wondering if people are getting tired of my scripture and "wow moments" with God....but i'm not sorry. I'm really enjoying diving deeper into my faith and sharing it with others. And I figure this is my space to talk about what I want - and I want to share these moments where I truly feel that God is holding my hand and walking me through all of this. He continues to amaze me with His presence.
For we live by faith, not by sight. 2 Corinthians 5:7
Anyway, I didn't sleep well that night so last night i was exhausted when i got into bed at 10:30. And I laid there...and laid there...and laid there...
So then, of course, i start thinking "why in the heck can't I sleep? I'm so tired!" I'm not feeling stressed, or worried (i don't think), so as I laid there I just started thinking about everything that's on my mind (that might be keeping me awake):
* I'm taking a road trip to Chicago in a few weeks (super excited!! I'll blog about that another day)
* I got appointments scheduled up at Mayo Clinic for the last week in April and it's a lot
* I have 2 more chemo treatments to survive
* I want to do yoga tomorrow but will I be too stupid tired?
* I need to remember to make soup and deliver to a friend
* Stop at Sugar Bowl and pick up something on hold
* Drink all my carrot juice
* Back to thinking about Mayo Clinic and decisions....
And then i just started to cry. Like I said, i don't feel like i've been stressed or worried...but obviously the whole decision-making aspect of my illness is in the back of my mind always. I'm praying the carrot juice will somehow shrink the tumor for me so I don't have to utilize surgery. It's not my favorite option, even though i'm so glad it IS an option. It's a big, scary, BIG surgery. I think the part that gets me is that I don't even know HOW i will decide (i should say "we" but ultimately i think it's my choice). How do you make the choice to possibly put your life at perhaps greater risk - for what might be the greater good? The surgeon is confident and positive he can do this surgery. BUT. Of course...but....he can't speculate on my recovery, or that things will all work as planned post-surgery. We're messing with major organs and blood vessels here.
And all of this sounds like i'm stressed and worried, right? I still contend that I'm not. It doesn't feel like either of those things...it mostly just feels like uncertainty. Wondering how on earth i will ever be able to make that decision.
And then -
A good friend gave me a devotional that I read every morning. This was today's devotional:
WALK BY FAITH, NOT BY SIGHT. As you take steps of faith, depending on Me, I will show you how much I can do for you. If you live your life too safely, you will never know the thrill of seeing Me work through you. When I gave you My Spirit, I empowered you to live beyond your natural ability and strength. That's why it is so wrong to measure your energy level against the challenges ahead of you. The issue is not your strength but Mine, which is limitless. By walking close to Me, you can accomplish My purposes in My strength.
I put that part in bold because WOW. I have read it at least 5 times.
In the back of my head i've been wondering if people are getting tired of my scripture and "wow moments" with God....but i'm not sorry. I'm really enjoying diving deeper into my faith and sharing it with others. And I figure this is my space to talk about what I want - and I want to share these moments where I truly feel that God is holding my hand and walking me through all of this. He continues to amaze me with His presence.
For we live by faith, not by sight. 2 Corinthians 5:7
Monday, March 4, 2019
1 down - 3 to go....
CHEMO. It's like a horrible 4-letter word (yes, i realize it's a 5-letter word...details...sheesh).
I made it through last weeks round. Sick. Tired. Pretty typical.
The thing is...I really feel like complete crap. To the point that I just don't even want to talk. Or can't talk. From the moment the meds start dripping until sometime Saturday when I start to feel a little more normal...i barely say 2 words. I find that I clench my teeth - which is really bad for my teeth - i know. I feel so bad when the boys come in to check on me. I just can't even answer their questions. I nod my head. I try to say a couple words. But mostly I just sit there looking miserable. They get it. They don't press. They sit for a couple seconds of silence before saying "okay. let me know if you need anything." Even though they put on very brave faces, i know it's hard for them to see me like that. I can see the joy and relief in their eyes when I come "out of it" on Saturday and things start to feel a little more normal. Like i've said before...the hardest part of this is that THEY have to go through it as well - including Ben.
I haven't really talked about him a whole lot out here in the blogosphere, have I? He has been a rock throughout this whole thing. He was the one who called everyone - my family, his family - and broke the hardest news that the cancer was back. He has been the one handling all the questions after doctor appointments, sitting with me through appointments, encouraging me when I am so discouraged, understanding when I get really low and courageously trying to bring me back "up". Seeing me sick, weak, tired, and knowing that all he can do is pat my leg and tell me he loves me - even though I know he desperately wants to be able to take it all away from me. Talking with the boys. Making sure they are doing okay with everything. Serious conversations that let them know it's okay to be sad and scared, but always reassuring them. He has always been a "fixer"; trying to find solutions to every problem - so none of this has been easy.
He maintains his optimism (even if it's just for show) in all situations and constantly looks forward to the future. He talks about what we are going to do when the boys go to college. What we are going to do after retirement. Places we should go. Things I should learn (golf). :) However, he has also shown his vulnerability. Something i don't think i've ever really seen in our 25+ years together. Just as he wishes he could take all of this away from me, I wish I could take it away from him as well.
A friend gave me the book "The Hardest Peace". I finished it last night. It is a beautiful and heartbreaking and hard story to read. I related on so many levels and found myself almost saying out loud, "yes...omgosh YES...exactly that" so many times. She talks several times about how "normalcy" is the greatest gift (amen!) and how all of the small moments in life are now the biggest (again...YES!!). I could quote so many things from this book, but will stick to this from my reading last night:
"Dear heart, the purpose of life is not longevity."
That's what a friend said to me recently. The words slowly seeped into my soul. I digested them gradually. I hate them, and I love them.
[she talks about glorifying God and enjoying him FOREVER]
Longevity is not the answer, but it is my soft heart's desire. But to give glory forever - yes, yes. That is my longevity in this place and in the next. It is easy to say those words when things are bright, but when future days feel like they are dimming, it's hard. It's just so hard.
In my desire to keep building my faithFULLness, there are many times when it is just.so.hard. Hard to trust. Hard to not be afraid. Hard to rely on Him. Hard to find peace. Hard to understand that it's not my job to understand.
To hear this woman (who is so grounded and rooted in her faith) admit that it is HARD, reminds me that it's okay for me to feel all of these things.
I spent a glorious day with my mom yesterday. We scrubbed and prepped 40lbs of carrots (!). She helped me with laundry. And then she thoroughly kicked my butt in gin rummy. We talked about scripture and she said there is a verse about worry that she really likes...but can't remember it exactly or what book it came from.
This morning the verse from my devotional was this:
Who of you by worrying can add a single hour to your life? Luke 12:25
I texted her "is this the verse?"
Sure enough...that's the one!
I'm so thankful for His gentle reminders that he is always with me (us).
I made it through last weeks round. Sick. Tired. Pretty typical.
The thing is...I really feel like complete crap. To the point that I just don't even want to talk. Or can't talk. From the moment the meds start dripping until sometime Saturday when I start to feel a little more normal...i barely say 2 words. I find that I clench my teeth - which is really bad for my teeth - i know. I feel so bad when the boys come in to check on me. I just can't even answer their questions. I nod my head. I try to say a couple words. But mostly I just sit there looking miserable. They get it. They don't press. They sit for a couple seconds of silence before saying "okay. let me know if you need anything." Even though they put on very brave faces, i know it's hard for them to see me like that. I can see the joy and relief in their eyes when I come "out of it" on Saturday and things start to feel a little more normal. Like i've said before...the hardest part of this is that THEY have to go through it as well - including Ben.
I haven't really talked about him a whole lot out here in the blogosphere, have I? He has been a rock throughout this whole thing. He was the one who called everyone - my family, his family - and broke the hardest news that the cancer was back. He has been the one handling all the questions after doctor appointments, sitting with me through appointments, encouraging me when I am so discouraged, understanding when I get really low and courageously trying to bring me back "up". Seeing me sick, weak, tired, and knowing that all he can do is pat my leg and tell me he loves me - even though I know he desperately wants to be able to take it all away from me. Talking with the boys. Making sure they are doing okay with everything. Serious conversations that let them know it's okay to be sad and scared, but always reassuring them. He has always been a "fixer"; trying to find solutions to every problem - so none of this has been easy.
He maintains his optimism (even if it's just for show) in all situations and constantly looks forward to the future. He talks about what we are going to do when the boys go to college. What we are going to do after retirement. Places we should go. Things I should learn (golf). :) However, he has also shown his vulnerability. Something i don't think i've ever really seen in our 25+ years together. Just as he wishes he could take all of this away from me, I wish I could take it away from him as well.
A friend gave me the book "The Hardest Peace". I finished it last night. It is a beautiful and heartbreaking and hard story to read. I related on so many levels and found myself almost saying out loud, "yes...omgosh YES...exactly that" so many times. She talks several times about how "normalcy" is the greatest gift (amen!) and how all of the small moments in life are now the biggest (again...YES!!). I could quote so many things from this book, but will stick to this from my reading last night:
"Dear heart, the purpose of life is not longevity."
That's what a friend said to me recently. The words slowly seeped into my soul. I digested them gradually. I hate them, and I love them.
[she talks about glorifying God and enjoying him FOREVER]
Longevity is not the answer, but it is my soft heart's desire. But to give glory forever - yes, yes. That is my longevity in this place and in the next. It is easy to say those words when things are bright, but when future days feel like they are dimming, it's hard. It's just so hard.
In my desire to keep building my faithFULLness, there are many times when it is just.so.hard. Hard to trust. Hard to not be afraid. Hard to rely on Him. Hard to find peace. Hard to understand that it's not my job to understand.
To hear this woman (who is so grounded and rooted in her faith) admit that it is HARD, reminds me that it's okay for me to feel all of these things.
I spent a glorious day with my mom yesterday. We scrubbed and prepped 40lbs of carrots (!). She helped me with laundry. And then she thoroughly kicked my butt in gin rummy. We talked about scripture and she said there is a verse about worry that she really likes...but can't remember it exactly or what book it came from.
This morning the verse from my devotional was this:
Who of you by worrying can add a single hour to your life? Luke 12:25
I texted her "is this the verse?"
Sure enough...that's the one!
I'm so thankful for His gentle reminders that he is always with me (us).
Wednesday, February 27, 2019
oompa-loompa
I read this book recently called "Curing Cancer with Carrots". It's very short - quick read - and really fascinating. It's written my a woman who had colon cancer - had surgery to remove it - and then it spread to 2 tumors between her lungs. She resisted and then refused to do chemotherapy, and came across a man who had "cured" his own cancer by drinking carrot juice. She contacted him and decided to give it a try (she also did a bunch of research).
Anyway, she juiced 5lbs of carrots every day. It's about 40 oz of carrot juice. She did this for about 3 months, and her tumors shrank and went away. (same with the man mentioned above...tumors disappeared and he's been cancer free for over 6 years)
I was intrigued.
I contacted my dr up at Mayo to see what the risk would be of me maybe taking a chemo break and trying out this carrot theory. He called me back and we had a discussion about the whole thing. He cautioned me against stopping chemo. I asked WHY. Why do I have to have more chemo when the tumor (seemingly) isn't responding? Its just staying right where it is? He said that the PET scan they did this last time showed that there aren't a lot of "viable" cells within the tumor, or anywhere else. Not having a PET scan to compare it to makes assumptions difficult, but he believes the chemo is killing the cancer cells and doesn't want to risk stopping the chemo and having some rogue cells take up residence somewhere else in my body - thus eliminating the possibility of surgery.
BOO.
However, he also isn't opposed to me trying this carrot deal (and trying to clean up my diet in general). He can't really "recommend" it to me since there aren't a lot of clinical trials or research backing the idea. But I told him "if i'm willing to flood my body with poison (chemo), then why wouldn't I try flooding it with nutrients?" He agreed. He also agreed that the medical field doesn't do a very good job of incorporating diet information into their treatment plans and said they need to do better in that regard.
All of this to say - i started drinking carrot juice yesterday. I borrowed my neighbors juicer and bought my first 5lb bag of carrots. Bought another 5lbs this morning and am almost done with my "5 glasses" for the day (5 lbs of carrots = about 40oz of juice = 5 8oz glasses). Not gonna lie...I'm not good with having to drink stuff, so this is a challenge. I just have to keep picturing my tumor shrinking - mind over matter. I will have to take a break during chemo since i get so sick, but am hoping the extra nutrients i get from all the juice will do me some good (and holy cow if it starts to shrink this tumor wouldn't that be freaking awesome?!!).
I also started reading "Chris beat Cancer". Another person who fought his cancer battle without chemo - but with diet changes. I'm making an effort to eat mostly clean, but admittedly i'm not very good at it. Why can't Doritos be a clean food? I will give myself some wiggle room... :)
Oh - side effect of lots of carrot juice is that my skin may start to appear a little orange. I'm hoping it will just look "sun kissed".
Chemo starts up again tomorrow. Not looking forward to it. That's all i'm gonna say about that.
Deuteronomy is proving to be almost as challenging as Numbers. I feel kind of guilty for looking ahead and thinking maybe i'll just skip the rest of this book (not that Joshua looks a whole lot better). Any advice on this topic (reading the Bible) would be appreciated.
Jesus replied: "Love the Lord your God with all your heart and with all your soul and with all your mind."
This is the first and greatest commandment. And the second is like it: "Love your neighbor as yourself"
Matthew 22:37-39
Anyway, she juiced 5lbs of carrots every day. It's about 40 oz of carrot juice. She did this for about 3 months, and her tumors shrank and went away. (same with the man mentioned above...tumors disappeared and he's been cancer free for over 6 years)
I was intrigued.
I contacted my dr up at Mayo to see what the risk would be of me maybe taking a chemo break and trying out this carrot theory. He called me back and we had a discussion about the whole thing. He cautioned me against stopping chemo. I asked WHY. Why do I have to have more chemo when the tumor (seemingly) isn't responding? Its just staying right where it is? He said that the PET scan they did this last time showed that there aren't a lot of "viable" cells within the tumor, or anywhere else. Not having a PET scan to compare it to makes assumptions difficult, but he believes the chemo is killing the cancer cells and doesn't want to risk stopping the chemo and having some rogue cells take up residence somewhere else in my body - thus eliminating the possibility of surgery.
BOO.
However, he also isn't opposed to me trying this carrot deal (and trying to clean up my diet in general). He can't really "recommend" it to me since there aren't a lot of clinical trials or research backing the idea. But I told him "if i'm willing to flood my body with poison (chemo), then why wouldn't I try flooding it with nutrients?" He agreed. He also agreed that the medical field doesn't do a very good job of incorporating diet information into their treatment plans and said they need to do better in that regard.
All of this to say - i started drinking carrot juice yesterday. I borrowed my neighbors juicer and bought my first 5lb bag of carrots. Bought another 5lbs this morning and am almost done with my "5 glasses" for the day (5 lbs of carrots = about 40oz of juice = 5 8oz glasses). Not gonna lie...I'm not good with having to drink stuff, so this is a challenge. I just have to keep picturing my tumor shrinking - mind over matter. I will have to take a break during chemo since i get so sick, but am hoping the extra nutrients i get from all the juice will do me some good (and holy cow if it starts to shrink this tumor wouldn't that be freaking awesome?!!).
I also started reading "Chris beat Cancer". Another person who fought his cancer battle without chemo - but with diet changes. I'm making an effort to eat mostly clean, but admittedly i'm not very good at it. Why can't Doritos be a clean food? I will give myself some wiggle room... :)
Oh - side effect of lots of carrot juice is that my skin may start to appear a little orange. I'm hoping it will just look "sun kissed".
Chemo starts up again tomorrow. Not looking forward to it. That's all i'm gonna say about that.
Deuteronomy is proving to be almost as challenging as Numbers. I feel kind of guilty for looking ahead and thinking maybe i'll just skip the rest of this book (not that Joshua looks a whole lot better). Any advice on this topic (reading the Bible) would be appreciated.
Jesus replied: "Love the Lord your God with all your heart and with all your soul and with all your mind."
This is the first and greatest commandment. And the second is like it: "Love your neighbor as yourself"
Matthew 22:37-39
Sunday, February 24, 2019
afraid to be hopeful
Okay! It was an exhausting week...or at least an exhausting trip to Rochester.
As always, we were overwhelmed by the number of people and the sadness and hardship that is everywhere at Mayo. It is eye-opening and heartbreaking and hard and real. And we are counted in that group. I'm sure there are people looking at us and feeling our struggle and hardship among the many.
So, the big part of this visit was to have me thoroughly scanned. The surgeon wanted a PET scan, MRI...and a CT scan (will get to that in a min). I had bloodwork at 7am, and went straight from there to my PET/MRI appt. They let you know in advance that it will take 2-3 hours, so Ben had lots of time to fill. I told him my order from Brueggers the night before so he would at least have that errand to kill some time. And he brought a book. Smart guy. They weren't joking about how long it would take. They take you back, you put on your hospital gown and the socks they give you with the grippy bottoms and they get an IV in. Got it on the first stick, so that was nice. Then they take you back to a little room where they then inject you with a dye that takes 45 min to circulate through your system. They close the curtain, dim the lights and there I sat. So...i tried to take a little nap. Then they come get me, have me use the restroom, and head into the scan room. If you've never had an MRI, the "scanner" is no joke. It's a big tube that feels exceptionally small once you get in there. I laid down on the table (like lying on a cement slab) and they put ear plugs in my ears, secured this odd contraption around my face, put pads around my arms to keep them close and a pad under my knees for "comfort" (HA). I don't consider myself claustrophobic, but heading into the tube headfirst always freaks me out. I quickly close my eyes. MRIs are really really loud. It sounds like you are in the middle of a construction site while you are in there. I told Ben I tried to picture myself on one of the chairs at Kings Pointe (hard plastic and uncomfortable) watching the boys jump off the diving board. Or i would try to change the noise of the machine into a different sound (something less like a jackhammer being used right next to my ear). Mind over matter....
After the MRI is over they bring you out briefly....long enough for me to sit up at least and roll my neck. Then back down with a different head contraption for the PET. Breathing instructions this time. The first time they had me hold my breath I started to panic cause it was for much longer than i anticipated. And still with the noises. I started to count how many times the "hammer" would pound while I held my breath.
1. It gave me something to focus on and
2. It made me less anxious about how long I had to hold my breath
I was in the tube for a LONG time. I honestly don't know how long exactly...but they did tell me the PET would be 40 minutes. I felt like the MRI was longer. Again...if you had any claustrophobia you would surely need to be sedated.
After that we had some time before the appt with the oncologist at 1:45. Back to the hotel so I could eat my well-deserved bagels. A little rest, and then we went for lunch before heading to the waiting room.
We literally sat down about 2 min and they called us back. I got weighed and measured. I'm 5'5" for anyone interested (i asked).
Then they take you to another room and you wait. And wait.
Oncologist came in. He's a young guy who is actually doing his fellowship. He consults with the actual oncology dr before he comes in. We chatted, he asks questions etc., and then we look at the scan. Head to toe. Nerve-wracking waiting to hear what they saw.
The words "there are no other signs of cancer anywhere in your body" came out of his mouth. My heart lept.
The tumor is unchanged, but it didn't "light up" quite as much as we expected (good i think?).
"Did you have a CT scan?" he asks. Uh....no? I wasn't scheduled for one. Well, apparently they tried to get ahold of me earlier in the week and get it scheduled but I missed the call or something. SO...lets do a CT scan tomorrow. The surgeon wants to make sure he has a clear image of the tumor.
We will meet with the surgeon after the oncologist but he tells us that I will need to do another 2 rounds of chemo...meaning 2 more cycles of 4 weeks on/2 weeks off. This news makes my heart sink. 12 more weeks. 8 more weeks of chemo. Ugh.
He leaves and we stay in the room to meet with the surgeon.
We wait.
And wait.
And wait.
No joke probably an hour? It was a long time. Ben thought the cleaning people might discover us still in there waiting.
Surgeon bursts in. Why does it seem like surgeons always burst into a room?
Anyway, he has an entourage...2 other doctors (?) and a scheduler with her laptop. He sits down and wants to hear my story from the very beginning...back to 2008. He wants to see my scans from 2008. He gets a picture of my aorta and blood vessels branching off. He draws a picture of where my tumor sits and what surgery would entail. It is very risky. Blood vessels (veins? i'm not good at this part) would have to be spliced and re-routed to keep my liver and kidneys functioning. My stomach would have to be removed. REMOVED.
"you can live without a stomach" he says somewhat nonchalantly.
Normally, I would not be a candidate for this surgery. BUT. I am young. I am otherwise healthy. I am small.
He does this surgery for pancreatic cancer. He has done this before. He is confident he can do this surgery - it is a viable option. A.viable.option.
Still risky. Things could go wrong. Veins/vessels might not cooperate etc. Obviously...all surgery poses risk. this one a bit more.
They are getting me in for a CT scan the next day. We have time to think about this option because regardless I have to go through the additional chemo and then will have radiation.
And they want me to meet with the "gut failure team". If i have surgery, I will have chronic diarrhea for the rest of my life. "Actually, do you have that now?" he asks. I say yep....he's not surprised. The tumor is causing that.
He and his team leave the room and our oncology fellow returns. I'm sure we look shell-shocked. He gets it.
He tells us we have time to make decisions. He also says that another option is to get through chemo and radiation, and then leave the tumor and continue to treat this as a chronic illness. Chronic cancer. Hm.
He doesn't know exactly what that looks like treatment-wise. A body can only handle so much chemo.
CT scan at 8am the next morning. Another IV. A much less scary tube (like 1/4 tube) and a much quicker scan. A little recovery time and we headed home.
SO....good news is that the scans show no other signs of cancer anywhere else. This is a huge relief.
Bad news is the next 12 weeks of chemo. We will head back up to Rochester sometime in May and will talk with radiology and the gut failure team. Based on what the surgeon and oncology fellow said we are guessing 4-5 weeks of radiation. Then we will need to decide what we are doing. Surgery? or Chronic cancer?
I feel like there is hope. I could actually make it through this and get to have the time that I've been praying for. It scares me to think that i'm looking forward to a future that might be stolen away by this disease at any moment. I hate feeling scared by hope.
I'm trying to dive into scripture as it seems to help. I use google. I write down verses that speak to me. I can't seem to memorize anything (blame chemo-brain). I'm even taking a crack at reading the Bible. I survived Numbers, so I'm feeling fairly optimistic. I feel like there are some people who are so rooted in their faith and can talk so eloquently about God, Jesus, love, hope, trust, FAITH. I don't feel like i'm one of those people, and am not necessarily trying to become one of those people, but i do want to gain a better perspective, feel a better connection, and continue to become more faithFULL. My faith in HIM has helped to keep me going. helped keep me calm. helped keep me positive. helped me be so aware of the many blessings in my life (daily thanks you guys...works wonders).
This is what I wrote down this morning as I started Deuteronomy -
But if from there you seek the Lord your God, you will find him if you seek him with all your heart and with all your soul. Deuteronomy 4:29
As always, we were overwhelmed by the number of people and the sadness and hardship that is everywhere at Mayo. It is eye-opening and heartbreaking and hard and real. And we are counted in that group. I'm sure there are people looking at us and feeling our struggle and hardship among the many.
So, the big part of this visit was to have me thoroughly scanned. The surgeon wanted a PET scan, MRI...and a CT scan (will get to that in a min). I had bloodwork at 7am, and went straight from there to my PET/MRI appt. They let you know in advance that it will take 2-3 hours, so Ben had lots of time to fill. I told him my order from Brueggers the night before so he would at least have that errand to kill some time. And he brought a book. Smart guy. They weren't joking about how long it would take. They take you back, you put on your hospital gown and the socks they give you with the grippy bottoms and they get an IV in. Got it on the first stick, so that was nice. Then they take you back to a little room where they then inject you with a dye that takes 45 min to circulate through your system. They close the curtain, dim the lights and there I sat. So...i tried to take a little nap. Then they come get me, have me use the restroom, and head into the scan room. If you've never had an MRI, the "scanner" is no joke. It's a big tube that feels exceptionally small once you get in there. I laid down on the table (like lying on a cement slab) and they put ear plugs in my ears, secured this odd contraption around my face, put pads around my arms to keep them close and a pad under my knees for "comfort" (HA). I don't consider myself claustrophobic, but heading into the tube headfirst always freaks me out. I quickly close my eyes. MRIs are really really loud. It sounds like you are in the middle of a construction site while you are in there. I told Ben I tried to picture myself on one of the chairs at Kings Pointe (hard plastic and uncomfortable) watching the boys jump off the diving board. Or i would try to change the noise of the machine into a different sound (something less like a jackhammer being used right next to my ear). Mind over matter....
After the MRI is over they bring you out briefly....long enough for me to sit up at least and roll my neck. Then back down with a different head contraption for the PET. Breathing instructions this time. The first time they had me hold my breath I started to panic cause it was for much longer than i anticipated. And still with the noises. I started to count how many times the "hammer" would pound while I held my breath.
1. It gave me something to focus on and
2. It made me less anxious about how long I had to hold my breath
I was in the tube for a LONG time. I honestly don't know how long exactly...but they did tell me the PET would be 40 minutes. I felt like the MRI was longer. Again...if you had any claustrophobia you would surely need to be sedated.
After that we had some time before the appt with the oncologist at 1:45. Back to the hotel so I could eat my well-deserved bagels. A little rest, and then we went for lunch before heading to the waiting room.
We literally sat down about 2 min and they called us back. I got weighed and measured. I'm 5'5" for anyone interested (i asked).
Then they take you to another room and you wait. And wait.
Oncologist came in. He's a young guy who is actually doing his fellowship. He consults with the actual oncology dr before he comes in. We chatted, he asks questions etc., and then we look at the scan. Head to toe. Nerve-wracking waiting to hear what they saw.
The words "there are no other signs of cancer anywhere in your body" came out of his mouth. My heart lept.
The tumor is unchanged, but it didn't "light up" quite as much as we expected (good i think?).
"Did you have a CT scan?" he asks. Uh....no? I wasn't scheduled for one. Well, apparently they tried to get ahold of me earlier in the week and get it scheduled but I missed the call or something. SO...lets do a CT scan tomorrow. The surgeon wants to make sure he has a clear image of the tumor.
We will meet with the surgeon after the oncologist but he tells us that I will need to do another 2 rounds of chemo...meaning 2 more cycles of 4 weeks on/2 weeks off. This news makes my heart sink. 12 more weeks. 8 more weeks of chemo. Ugh.
He leaves and we stay in the room to meet with the surgeon.
We wait.
And wait.
And wait.
No joke probably an hour? It was a long time. Ben thought the cleaning people might discover us still in there waiting.
Surgeon bursts in. Why does it seem like surgeons always burst into a room?
Anyway, he has an entourage...2 other doctors (?) and a scheduler with her laptop. He sits down and wants to hear my story from the very beginning...back to 2008. He wants to see my scans from 2008. He gets a picture of my aorta and blood vessels branching off. He draws a picture of where my tumor sits and what surgery would entail. It is very risky. Blood vessels (veins? i'm not good at this part) would have to be spliced and re-routed to keep my liver and kidneys functioning. My stomach would have to be removed. REMOVED.
"you can live without a stomach" he says somewhat nonchalantly.
Normally, I would not be a candidate for this surgery. BUT. I am young. I am otherwise healthy. I am small.
He does this surgery for pancreatic cancer. He has done this before. He is confident he can do this surgery - it is a viable option. A.viable.option.
Still risky. Things could go wrong. Veins/vessels might not cooperate etc. Obviously...all surgery poses risk. this one a bit more.
They are getting me in for a CT scan the next day. We have time to think about this option because regardless I have to go through the additional chemo and then will have radiation.
And they want me to meet with the "gut failure team". If i have surgery, I will have chronic diarrhea for the rest of my life. "Actually, do you have that now?" he asks. I say yep....he's not surprised. The tumor is causing that.
He and his team leave the room and our oncology fellow returns. I'm sure we look shell-shocked. He gets it.
He tells us we have time to make decisions. He also says that another option is to get through chemo and radiation, and then leave the tumor and continue to treat this as a chronic illness. Chronic cancer. Hm.
He doesn't know exactly what that looks like treatment-wise. A body can only handle so much chemo.
CT scan at 8am the next morning. Another IV. A much less scary tube (like 1/4 tube) and a much quicker scan. A little recovery time and we headed home.
SO....good news is that the scans show no other signs of cancer anywhere else. This is a huge relief.
Bad news is the next 12 weeks of chemo. We will head back up to Rochester sometime in May and will talk with radiology and the gut failure team. Based on what the surgeon and oncology fellow said we are guessing 4-5 weeks of radiation. Then we will need to decide what we are doing. Surgery? or Chronic cancer?
I feel like there is hope. I could actually make it through this and get to have the time that I've been praying for. It scares me to think that i'm looking forward to a future that might be stolen away by this disease at any moment. I hate feeling scared by hope.
I'm trying to dive into scripture as it seems to help. I use google. I write down verses that speak to me. I can't seem to memorize anything (blame chemo-brain). I'm even taking a crack at reading the Bible. I survived Numbers, so I'm feeling fairly optimistic. I feel like there are some people who are so rooted in their faith and can talk so eloquently about God, Jesus, love, hope, trust, FAITH. I don't feel like i'm one of those people, and am not necessarily trying to become one of those people, but i do want to gain a better perspective, feel a better connection, and continue to become more faithFULL. My faith in HIM has helped to keep me going. helped keep me calm. helped keep me positive. helped me be so aware of the many blessings in my life (daily thanks you guys...works wonders).
This is what I wrote down this morning as I started Deuteronomy -
But if from there you seek the Lord your God, you will find him if you seek him with all your heart and with all your soul. Deuteronomy 4:29
Tuesday, February 19, 2019
scared
Today we head back to Mayo. This appointment has been on the books for 2 months or so, but we have talked very little about it. I think the reality of what we might hear at this appointment is too much to think about. There's no way of knowing what will happen, how we will react, or what comes next. We have to hope for the best...but I, of course, am always hesitant to "get my hopes up". Like being hopeful for good news will somehow make the bad news worse?
I hugged my boys and told them I loved them before they went to school this morning. I held back my tears and tried to act like this was nbd - just heading up to Rochester for a couple of days. I could feel it in their hugs tho...what a heavy load they are carrying. The uncertainty. I've been a mess ever since they left. God i love them so much.
And now i've been staring at this screen for 20 minutes. Wiping away tears. I don't know what else to say.
I'm trying hard to cling to these words:
Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go. Joshua 1:9
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10
I hugged my boys and told them I loved them before they went to school this morning. I held back my tears and tried to act like this was nbd - just heading up to Rochester for a couple of days. I could feel it in their hugs tho...what a heavy load they are carrying. The uncertainty. I've been a mess ever since they left. God i love them so much.
And now i've been staring at this screen for 20 minutes. Wiping away tears. I don't know what else to say.
I'm trying hard to cling to these words:
Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go. Joshua 1:9
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10
Monday, February 4, 2019
a poorly written, poorly cited book review
Quick favor: if you are "Unidentified" on Google (like when you post a comment), would you please sign your name so I know who you are? I mean, unless you want to remain anonymous I guess.
Okay, so...I'm reading this book. Well, actually I already read it and now i'm re-reading it with a hi-lighter and pen handy. The book is: It's Not Supposed to Be This Way finding unexpected strength when disappointments leave you shattered by Lysa Terkeurst.
She is a religious author and speaker and president of Proverbs 31 Ministries (I haven't really looked into what that is exactly).
A little background on the book....she is writing from her perspective of "disappointment" in that she found out her husband was cheating on her. So, she is "shattered" and trying to figure out how the heck to move forward etc. My perspective is a bit different, as you can imagine. Nonetheless, as i read the book the first time there were lots of things that really struck me and made me think...which is why i'm now reading it again with my hi-lighter.
And I'm struggling a bit. I could use some opinions, input, advice?, thoughts.
So, obviously, this book is written from a Christian perspective. The big message is putting our trust in God and believing that He has the best plan for our lives. I am desperately trying to do those things. Trust. Believe. HOPE. There are lots of great scriptures and stories etc. and while I believe them to be true, i also struggle. The nice thing is that she does acknowledge that: "My feelings and my faith will almost certainly come into conflict with each other."
Here's a big passage that really spoke to me (chapter 2, page 23):
No matter how well i follow the rules, do what's right, and seek to obey God with my whole heart, I can't control my life. I can't control God.
It's hard to type those words.
Because I don't want to control God.
Until I do.
When His timing seems questionable, His lack of intervention seems hurtful, and His promises seem doubtful, I get afraid. I get confused. And left alone with those feelings, i can't help but feel disappointed that God isn't doing what I assume a good God should do.
I want to assume that His promise to never leave me or forsake me means that He's operating like a supernatural shield around me, preventing horrific things from happening to me and to those I love.
and to those I love
You guys...this is where the struggle lies. As i read this book, i find myself reading it from the viewpoint of my husband and kids. If I die - how will they reconcile the pain, anger, frustration, and disappointment? How difficult will it be for them to believe that "God is good" when they are dealing with the loss of their wife/mother? I'm furiously hi-lighting everything that I think they will need to cling to and as i read it from their perspective there are a lot of really.hard.things.
And I feel guilty.
Yep.
I feel awful that I'm putting them through this. That they also have to go through the chemo treatments. That they might have to go to their wife/mother's funeral and deal with that awful sadness and a life full of that little bit of emptiness that remains when someone we love dies. I know that's a bit morbid, but death is a reality that I have to face. I don't dwell on it, and i certainly want to do everything in my power to NOT have that be the outcome, but it's still there. And I feel terrible that i might put them through that. I feel terrible that they might have to struggle with that pain and struggle how to reconcile that with their faith in God. Which leads to more guilt about not going to church often enough, not praying enough, not reading the Bible, not instilling a bigger love of God in their hearts....not preparing them enough.
I don't know. This post is a little bit everywhere. Sorry.
Here's the thing,
I feel, in my heart, that i don't need to be afraid of death. My love of Christ and my belief that Jesus died for my sins and that when we die we go to Heaven makes me not afraid. I will be free of suffering, free of sickness, and celebrating with loved ones who have gone before me, plus, you know...GOD is there, so that's pretty cool.
But.
While i'm "free", my loved ones are still here. And they are suffering.
Hm.
So...the point of this post is....I really don't know. Maybe you can tell me.
Okay, so...I'm reading this book. Well, actually I already read it and now i'm re-reading it with a hi-lighter and pen handy. The book is: It's Not Supposed to Be This Way finding unexpected strength when disappointments leave you shattered by Lysa Terkeurst.
She is a religious author and speaker and president of Proverbs 31 Ministries (I haven't really looked into what that is exactly).
A little background on the book....she is writing from her perspective of "disappointment" in that she found out her husband was cheating on her. So, she is "shattered" and trying to figure out how the heck to move forward etc. My perspective is a bit different, as you can imagine. Nonetheless, as i read the book the first time there were lots of things that really struck me and made me think...which is why i'm now reading it again with my hi-lighter.
And I'm struggling a bit. I could use some opinions, input, advice?, thoughts.
So, obviously, this book is written from a Christian perspective. The big message is putting our trust in God and believing that He has the best plan for our lives. I am desperately trying to do those things. Trust. Believe. HOPE. There are lots of great scriptures and stories etc. and while I believe them to be true, i also struggle. The nice thing is that she does acknowledge that: "My feelings and my faith will almost certainly come into conflict with each other."
Here's a big passage that really spoke to me (chapter 2, page 23):
No matter how well i follow the rules, do what's right, and seek to obey God with my whole heart, I can't control my life. I can't control God.
It's hard to type those words.
Because I don't want to control God.
Until I do.
When His timing seems questionable, His lack of intervention seems hurtful, and His promises seem doubtful, I get afraid. I get confused. And left alone with those feelings, i can't help but feel disappointed that God isn't doing what I assume a good God should do.
I want to assume that His promise to never leave me or forsake me means that He's operating like a supernatural shield around me, preventing horrific things from happening to me and to those I love.
and to those I love
You guys...this is where the struggle lies. As i read this book, i find myself reading it from the viewpoint of my husband and kids. If I die - how will they reconcile the pain, anger, frustration, and disappointment? How difficult will it be for them to believe that "God is good" when they are dealing with the loss of their wife/mother? I'm furiously hi-lighting everything that I think they will need to cling to and as i read it from their perspective there are a lot of really.hard.things.
And I feel guilty.
Yep.
I feel awful that I'm putting them through this. That they also have to go through the chemo treatments. That they might have to go to their wife/mother's funeral and deal with that awful sadness and a life full of that little bit of emptiness that remains when someone we love dies. I know that's a bit morbid, but death is a reality that I have to face. I don't dwell on it, and i certainly want to do everything in my power to NOT have that be the outcome, but it's still there. And I feel terrible that i might put them through that. I feel terrible that they might have to struggle with that pain and struggle how to reconcile that with their faith in God. Which leads to more guilt about not going to church often enough, not praying enough, not reading the Bible, not instilling a bigger love of God in their hearts....not preparing them enough.
I don't know. This post is a little bit everywhere. Sorry.
Here's the thing,
I feel, in my heart, that i don't need to be afraid of death. My love of Christ and my belief that Jesus died for my sins and that when we die we go to Heaven makes me not afraid. I will be free of suffering, free of sickness, and celebrating with loved ones who have gone before me, plus, you know...GOD is there, so that's pretty cool.
But.
While i'm "free", my loved ones are still here. And they are suffering.
Hm.
So...the point of this post is....I really don't know. Maybe you can tell me.
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