I changed the name of my blog recently. Mostly because as I re-read some of the posts I realized that each post was sharing an actual piece of my head or heart. You may think that it is easy for me to do, but it is one of the most difficult things for me to do. Writing it is so much better than trying to tell it verbally. Oh the problems my words cause.
Back in the fall I started following a blog called Mundane Faithfulness, about a young mother of 4 dying from breast cancer. Dying. Her favorite word was Grace and her very strong faith and commitment to the Lord kept her unbelievably-I just don't know. She was unbelievably awesome. She wrote a book called 'The Hardest Peace'. It is about coming to terms with knowing how/when/and why you are going to die. It's so difficult to read but so good. Her name was Kara Tippetts. We had a lot in common. She died around the time I stopped blogging. I was just so sad. The hardest part is that her friends are continuing her blog, sharing older posts, writing about how the family is doing and often writing about their own broken hearts. I just couldn't take it. I can't read about how her friends and family are doing after her death. I can't read how the children, or her littles as Kara called them, are doing without their mommy. We have/had so very much in common. I guess reading about what could be my story is just too much for my heart to handle.
Truth is, I haven't been ok since we came back from Mayo last August. Starting a new chemo at the end of that month. Then having so many issues with my body, thankfully nothing serious, but startling when they were unknown. There is just no break. Then to find out thru a CT scan that I had pleural effusions was life altering. I had to have a thorocentesis to drain the fluid from my lung area. It hurt so badly I couldn't even talk about it! Basically my lungs were almost collapsed, which is why I couldn't breathe or stop coughing. They drained 2 liters from my right lung and 1 from my left. Yea, that's how I felt too. Now, I have to go to a new chemo because the other has failed me. The one I tried a few weeks ago was so not how I was going to spend my time! So on the 22nd I start another new one. The worst part is that it is 5 days a week, then 28 days off. Oh boy, what fun.
So, no I'm not really very ok right now. No, hope is not my word right now. No I just don't want to interact right now. And no, I just don't know how I feel about God. I know some of what I should know and I believe what I do know about him, but I really don't understand very much right now. So no, no, I just don't know how to be happy or blessed or content or motivated. However, I am believing that like many of the dark places I've spent time in, a light will shine and I will be able to see a bit more clearly. But hear me- this battle is forever for me. No end for us to be a part of, except one. It's a ways off, but understand please, the battle ends with me.
My prayer request would be that this new chemo, Topotecan, would work so that I can finally get put onto a maintenance schedule. The more chemo, the more it accumulates and the more tired this body gets.
So you are caught up. I'm sorry it is a sucky story.
Friday, June 12, 2015
Sunday, February 1, 2015
The over rated normal
So now it's January. Our big trip is over- beautiful and wonderful and good! And blessed! Christmas is over. And snow is happening in a big way.
So before Disney, normal yuck stuff started happening. That kidney stone I mentioned in the last post. Well it decided to make itself known with the usual symptoms like blood clots and blood in the urine. A bladder infection that gave me no physical symptoms, and tummy acid issues. Everynight with the stomach acid, feeling, um, well pukey.
Then chemo the day after we got home from Disney. Ok, no issues. The next day my Vitamin C infusion. Oh, so not fun. Several times it has seriously affected my intestines. This time it did again yet differently. My intestines were making so much noise it was embarrassing. Never has my stomach rolled like that. It didn't hurt, but it created a lot of noise…. LOTS!! Then it created diarrhea. Then I'd get a day or two off…. Then I went to the kidney doctor. Good idea. Since I have medullary sponge kidney (I make kidney stones and my kidney stores them. Neat, huh?) he decided I should have a cystoscopy because of the blood clots and such. Well, of course there was a kidney stone in my left ureter, blocking passage into my bladder. And of course I had to have a stent put in for the healing of the ureter. Did you know that those stents are about a foot long? Me either. And yes, I did keep it! I ended up with a bladder infection after the stent was removed, of course. However, my tummy was NORMAL!! One month of feeling so much yuck, afraid to leave the house, sick of feeling sick. I realized I felt worse with this normal stuff than with my chemo!
In the middle of all this I go to see a gastroenterologist as well. Gotta cover it all. I think they'll find something ulcerish in my tummy when they do the endoscopy in February. As for the colonoscopy, hopefully nothing. I have to admit I do want to be sure that everything is all clear in those areas.
So this normal stuff I've been going thru really was terrible. These tests, these medicines. It did make me skip one treatment tho. I just needed my body to heal a bit before being blasted with poison. It was easy to make that decision when I found out my CA had dropped to 946. That's pretty amazing. Still way high, but 5000 lower than it was the last time I let myself find out the number. There was the miracle.
During this time of normal I also experienced way too much death. My grandma, my neighbors, friends children from church, friends family members from drugs…. Just so much. I needed the month off to process my grams, my neighbors, my friends losses. So much heartbreak. I've spent some time teary, some time numb and some time in disbelief. But I have to admit, it's nice to learn that I can still worry about others instead of seemingly always focusing on me. I want that part of me back. I've gotten sick of taking and I want to give more. I'm not quite done with normal yet. Right after normal comes chemo. But I feel alive, glad to have had a chance to feel some normal stuff, glad my chemo is working for my crazy stuff. I think I'm thankful. Considering the last 2 months of normal, that's pretty amazing.
So I'd like you to pray that my scopes are clear- whether good or bad- CLEAR. I'd also like to remain thankful, and feeling fairly descent. And my blood pressure is thru the roof since the cystoscopy. I didn't react well to the anesthesia. I'll save you the gory details, but I didn't wake up well….. And yes, I see my primary doctor tomorrow.
So that should bring you all up to date.
Love you muchly,
Vicki
All about August
So… August.
That's what I've come to call it. It has taken on it's very own identity in the journey called cancer. It's that trip to Mayo, the CA 125, the 'no trial for you', the growth in cancer, the metastasis of the cancer, the ascites. It was the month of crap. In fact, I think I've just recovered. I can't believe how long it too for me to process thru the information presented me back on August 7 at the Mayo Clinic. It was such a shock to the system that even my girls and I couldn't talk to each other. I think it was about a week before we could be together. However that was our fault. We had me loosing the battle way sooner than what the reality was/is.
Now remember, we had just been there in May, when I didn't have enough cancer to qualify for any trials and just 3 months later I have too much…. In July I fell. And I really think (yes it's kinda crazy stuff) that the fall caused this chain reaction in my body. I had some serious lower left side pain (kidney stone) and just believe with my whole heart that it woke up the cancer cells, caused the ascites which caused the spreading. Don't know if that is 'medically' possible, but I know my body pretty well by now… And that is what I think happened.
So what was that CA 125 that I wouldn't even tell my parents? Over 5000. That mortified me since my highest number upon diagnosis of the cancer was 276. So yeah, 5000 freaked me out. Then it rose to over 7000 the month it took to have my first chemo treatment for this recurrence. Yeah, a rough month, a rough fall. But something miraculous happened…. Some normal.
To be continued….
That's what I've come to call it. It has taken on it's very own identity in the journey called cancer. It's that trip to Mayo, the CA 125, the 'no trial for you', the growth in cancer, the metastasis of the cancer, the ascites. It was the month of crap. In fact, I think I've just recovered. I can't believe how long it too for me to process thru the information presented me back on August 7 at the Mayo Clinic. It was such a shock to the system that even my girls and I couldn't talk to each other. I think it was about a week before we could be together. However that was our fault. We had me loosing the battle way sooner than what the reality was/is.
This is us, trying to just be make things light. They were waiting for me to find out about removing the ascites. Yes they are banana phones.
Now remember, we had just been there in May, when I didn't have enough cancer to qualify for any trials and just 3 months later I have too much…. In July I fell. And I really think (yes it's kinda crazy stuff) that the fall caused this chain reaction in my body. I had some serious lower left side pain (kidney stone) and just believe with my whole heart that it woke up the cancer cells, caused the ascites which caused the spreading. Don't know if that is 'medically' possible, but I know my body pretty well by now… And that is what I think happened.
So what was that CA 125 that I wouldn't even tell my parents? Over 5000. That mortified me since my highest number upon diagnosis of the cancer was 276. So yeah, 5000 freaked me out. Then it rose to over 7000 the month it took to have my first chemo treatment for this recurrence. Yeah, a rough month, a rough fall. But something miraculous happened…. Some normal.
To be continued….
Thursday, December 11, 2014
What happened was this….
I've really had some major issues these last few months. They stem from some things that happened and didn't happen and I had an opinion about those things. It basically started as having a few trust issues. I felt myself pull away from wanting to be a part of my community. I know this is vague- it's going to stay that way. When all of these feelings were added to August 7th (that's what I call it, the day we learned too much at the Mayo Clinic) I just wanted to disappear. I usually do disappear for processing the bad information and everyone has always given me the grace to do that. But, to put it quite bluntly, this time the end seemed closer than fighting could take me.
During this darkness I expressed to Tim that it's time to start making some memories as a family. Of course we've always made memories. But I meant the BIG memories that would just last forever because of their BIGness. I don't want to be attempting to make memories when I am so sick I can't actually participate-you understand? When I am at that point, you guys get to come to me to make memories, but that time will be more private. Now to be clear, I am not close to that place right now, like I thought I was on August 7th. My current chemo is working, I feel pretty good, the chemo is not very harsh and it didn't cause my hair to fall out!
So what I wanted to do to make memories is go to Disney. We've only been once as a family and I was pregnant with Jay so he sorta missed it. My idea was to go for Christmas, relax and let that be our gift. I started looking into it, pricing it, looking at what we have for bills and such and just got so disappointed. A $5,000 was just not happening, memories or not. So I just kinda gave up on that one. Then this Groupon came to my email. A vacation club renting their condo's for CHEAP! I am a good bargain hunter and this was some bargain. 5 nights for under $600! Yes I am serious. So now I have to figure out the airfare and the days that are the least expensive to fly…. Weeks later flights for under $200. Yes I am serious. However there's still the cost of the parks- oh my! No way around that one really. So I gave up again. I told Tim we'll just have to do a few weekend things while the kids are home….. On his way to work that night he called me and said that we needed to just do this. Book it all and we'll figure the rest out. I was so awestruck that he felt the importance of this memory making like I did. Although it hurt my heart that he understood. That night moved us into longer, harder but important conversations.
So, maxed out AmEx, here we come. Disney here we come! We leave Tuesday-Sunday. On Monday before we leave I have my Avastin medication which really had no affect on me physically. The day after we return I have chemo. It's crazy and oh so wonderful.
So back to the trust issues. Well I realized that I was having an attitude problem at least for some of it and decided that I needed to work on getting rid of that. So I have been, while following the most amazing blog and story of courage and grace called Mundane Faithfulness. I've posted it a couple of times and yes it is a very difficult blog to read but I feel so validated and understood at a level only someone in our position can completely understand. Not like any difficult situation really. Her book is really good. Grace is what she is after and chasing with every breath she takes, every test and every next step. Her next steps suck. Her name is Kara and I am obsessed with following her at the moment. Quite frankly, there just isn't time for attitude problems so I'm quitting them. I've been given this grace to live each day I have for a purpose, and it's to continue to point people to Jesus.
So God's hand and feet- that's whoever you are- gave us a package of grace and blessing. That's what happened. 2 nights ago we were ding dong ditched, except there was a twist. My normal reaction is to fly out of the house running cuz I simply want to play too. But something kept me calm. I even gave them getaway time (altho the car was a bit noisy). I went to the door, the front door, and there was this package with a Mickey Mouse silhouette on it. Very interesting. Ok I admit it, I opened it! But then rewrapped it so that the kids could have the same reaction. I think it's important for them to have to figure out what just happened. Love just happened. In abundance from your hearts to overflowing in ours. The blessing was money for our trip. I don't know who started this or why, but I am going to just say thank you. Thank you for giving so much to our family over the last 6 years. Thank you for your tears, hugs, prayers, and hugs. Thank you for always asking. And thank you for making my kids wonder about goodness and love.
I've decided I will not try to figure this one out. I don't want to steal anyone's joy. Just know we are so thankful, very humbled, and feel very loved. This was a very unexpected, undeserved, and beautiful gift to our family.
Love,
Vicki and family
During this darkness I expressed to Tim that it's time to start making some memories as a family. Of course we've always made memories. But I meant the BIG memories that would just last forever because of their BIGness. I don't want to be attempting to make memories when I am so sick I can't actually participate-you understand? When I am at that point, you guys get to come to me to make memories, but that time will be more private. Now to be clear, I am not close to that place right now, like I thought I was on August 7th. My current chemo is working, I feel pretty good, the chemo is not very harsh and it didn't cause my hair to fall out!
So what I wanted to do to make memories is go to Disney. We've only been once as a family and I was pregnant with Jay so he sorta missed it. My idea was to go for Christmas, relax and let that be our gift. I started looking into it, pricing it, looking at what we have for bills and such and just got so disappointed. A $5,000 was just not happening, memories or not. So I just kinda gave up on that one. Then this Groupon came to my email. A vacation club renting their condo's for CHEAP! I am a good bargain hunter and this was some bargain. 5 nights for under $600! Yes I am serious. So now I have to figure out the airfare and the days that are the least expensive to fly…. Weeks later flights for under $200. Yes I am serious. However there's still the cost of the parks- oh my! No way around that one really. So I gave up again. I told Tim we'll just have to do a few weekend things while the kids are home….. On his way to work that night he called me and said that we needed to just do this. Book it all and we'll figure the rest out. I was so awestruck that he felt the importance of this memory making like I did. Although it hurt my heart that he understood. That night moved us into longer, harder but important conversations.
So, maxed out AmEx, here we come. Disney here we come! We leave Tuesday-Sunday. On Monday before we leave I have my Avastin medication which really had no affect on me physically. The day after we return I have chemo. It's crazy and oh so wonderful.
So back to the trust issues. Well I realized that I was having an attitude problem at least for some of it and decided that I needed to work on getting rid of that. So I have been, while following the most amazing blog and story of courage and grace called Mundane Faithfulness. I've posted it a couple of times and yes it is a very difficult blog to read but I feel so validated and understood at a level only someone in our position can completely understand. Not like any difficult situation really. Her book is really good. Grace is what she is after and chasing with every breath she takes, every test and every next step. Her next steps suck. Her name is Kara and I am obsessed with following her at the moment. Quite frankly, there just isn't time for attitude problems so I'm quitting them. I've been given this grace to live each day I have for a purpose, and it's to continue to point people to Jesus.
So God's hand and feet- that's whoever you are- gave us a package of grace and blessing. That's what happened. 2 nights ago we were ding dong ditched, except there was a twist. My normal reaction is to fly out of the house running cuz I simply want to play too. But something kept me calm. I even gave them getaway time (altho the car was a bit noisy). I went to the door, the front door, and there was this package with a Mickey Mouse silhouette on it. Very interesting. Ok I admit it, I opened it! But then rewrapped it so that the kids could have the same reaction. I think it's important for them to have to figure out what just happened. Love just happened. In abundance from your hearts to overflowing in ours. The blessing was money for our trip. I don't know who started this or why, but I am going to just say thank you. Thank you for giving so much to our family over the last 6 years. Thank you for your tears, hugs, prayers, and hugs. Thank you for always asking. And thank you for making my kids wonder about goodness and love.
I've decided I will not try to figure this one out. I don't want to steal anyone's joy. Just know we are so thankful, very humbled, and feel very loved. This was a very unexpected, undeserved, and beautiful gift to our family.
Vicki and family
Friday, November 21, 2014
How to choose
My beautiful Grandma died on Nov. 4th at the age of 97. 97! My dads mom died at the same age. This Sharpe/Browne/Leatherman/Barth family have good genes.
This loss, this choosing to wait to die until her daughter was there, just took me right back to Brittany Maynard and her decision to end her life. People missed a lot of beauty in the journey of dying with purpose. I'm not sure what dying with dignity is supposed to mean. No adult diapers? I don't know. I do know that this journey of Grams had a purpose. It's obvious to me…. but maybe not to others. But the point is in the end, the very end, Grams CHOOSE to wait for her daughter. Whether God gave her the will or that it was just the plan is unknown. The beauty of it cannot be taken lightly. I understand Grams circumstances are quite different than Brittany's. I totally understand that. Some journeys end after long and horrible and heartbreaking battles, leaving those left behind broken. But broken is not always bad. Broken is sometimes the only way we can be made whole again. Going thru these earthly traumas is a part of our lives. No one will be able to escape trauma. Seriously, if God can't escape it, why do we expect to. And as for a choice of when we get to escape because our journey will be hard and ugly on us and others- that's not a choice for us to make. The choice is how to travel.
I choose to travel with lots of baggage (meaning friends, family, help). Not everyone knows everything but you know just about everything. And I will share absolutely anything. And while there are many hard choices I am going to have to make along the way, the date of my death will not be one of them. There is a spiritual tenderness and love in helping and watching someone you love more than anything leave this rotten earth and step thru those gates of Pearls.
My Gram was really special. Her husband died, then a year or so later her son was diagnosed with Multiple Sclerosis. She cared for my Uncle until the day her died, in her house, often by herself. She taught us how to love even when my Uncle was in a vegetative state. We learned to include, to talk about Cubs baseball, since that is all that mattered, and we learned to be sad, and mad and to ask questions. My Uncle Darwin died at the end of his journey, from pneumonia often caused by MS. It was horrible. My Grams had to bury her son, my mom her brother, my cousins their father. There's a pain there I cannot understand. Hero's they all are.
Choices are hard to make, and we can make bad or wrong choices. Some matter, some don't. The right choice can affect any number of people in different ways. I come from a long line of family who are able to make good choices during the hard of life. That same line also make the most ridiculously stupid choices also. Humans…. We all are.
It's sad that Brittany and her family and friends were not given a chance to walk the hard journey of her life. It's sad that they can't respond to her strength of choices of treatment or of living life in spite of knowing she's dying. There are a lot of blessings in those moments, for both the living and the dying. I have proof. The proof will be in the comments below I hope. (on blog page please)
I live differently now. I forget more, but I care more. I love more, and I protect much more. I'm not afraid of speaking my mind much anymore; not afraid to argue. I didn't necessarily have a ton of strong opinions 10 years ago. I'm not afraid to take on teenagers! It's not my favorite, but I'm not afraid. And I am definitely not afraid to stand up for what it morally, ethically and biblically right to do. And it seems Gram may have taught me some of that.
If the choice is right, is within God's will, and will do no harm, it's probably a good one. Take a chance and make a choice. Make a decision. But always choose life. It was given to us as a gift, from a father who sacrificed his own son for us. For Him we can endure anything. Because of Him we can endure anything. In Him we can endure anything. Not always smiling, not always understanding, and often not without anger. He understands all of that because he felt so much more than we can ever imagine.
I have long periods of needing to process new, bad, or complicated information. I know I need to be able to sort thru and understand my options, my truth. My medical team understands that and is careful to give me the truth. I can't get thru my head if I don't have truth. In talking with my oncologist today I mentioned how it's necessary for 'us' to go to the dark places because they are a strong possibility or reality. I said we just have to in order to process so that we can deal so that we can fight. A right mind, and right spirit, and right attitude is half the battle. IT IS. Now matter what the battle. Hard is hard, no matter what your hard is, the process is similar. It is getting progressively more difficult for me to process at a fast pace. But until it's processed, this girl makes no decisions. And this drives my peeps nuts although they understand. I'm sure I'd feel the same if the roles were reversed. I expect that this trend will continue-me needing more time to process. Given that time however gives my heart and soul time to reconnect with God and to believe in winning. It's that simple. I just wish Brittany would have known that and the strength and determination and beauty that can come from a spirit filled with divine fight.
To Grams, for her strength and steadfast faith. For praying for us. For knowing how to love us, and showing what real love is by sacrificing her life for the lives of her husband and son. She wouldn't have seen it as a sacrifice but as her parental duty, her natural instinct to protect and nurse her son to health. Who of us wouldn't do that? My mommy does it every month for me. So when you wonder how I can do this, now you know. It's in my genes. I got some of the best ones available!
Polly on the rise.
My sister Sarah had been to see her a couple of weeks earlier, and Laura and I were heading there the 5th. Mom called early on the 4th, and I took off right after Paul's funeral. I've never packed so fast or driven to Chicago so quickly. Mom and Dad left before me, thank God because they arrived in time to say goodbye, to hold her sweet hand, talk and watch her leave with a smile. My mom missed that with her dad and brother. My mom really needed that. My cousin told Gram, the nurses told Gram, everyone told Gram that mom was on the way. She waited, I know not by what power, but somehow she waited. I got there about 2 hours later, but that's ok. I just wanted to be with my mom. She is the teacher of toughness and independence, but at that moment, tough needs to be trampled.
We spent the next day making the arrangements and shopping and it was good. The next we spent doing some shopping, hanging out with my cousins, the cousins who really took such good care of Gram. Then we spent an evening making grams 2 famous recipes for deviled eggs and orange jello. I now know how to make it….. But I need an old Tupperware jello mold.
This loss, this choosing to wait to die until her daughter was there, just took me right back to Brittany Maynard and her decision to end her life. People missed a lot of beauty in the journey of dying with purpose. I'm not sure what dying with dignity is supposed to mean. No adult diapers? I don't know. I do know that this journey of Grams had a purpose. It's obvious to me…. but maybe not to others. But the point is in the end, the very end, Grams CHOOSE to wait for her daughter. Whether God gave her the will or that it was just the plan is unknown. The beauty of it cannot be taken lightly. I understand Grams circumstances are quite different than Brittany's. I totally understand that. Some journeys end after long and horrible and heartbreaking battles, leaving those left behind broken. But broken is not always bad. Broken is sometimes the only way we can be made whole again. Going thru these earthly traumas is a part of our lives. No one will be able to escape trauma. Seriously, if God can't escape it, why do we expect to. And as for a choice of when we get to escape because our journey will be hard and ugly on us and others- that's not a choice for us to make. The choice is how to travel.
I choose to travel with lots of baggage (meaning friends, family, help). Not everyone knows everything but you know just about everything. And I will share absolutely anything. And while there are many hard choices I am going to have to make along the way, the date of my death will not be one of them. There is a spiritual tenderness and love in helping and watching someone you love more than anything leave this rotten earth and step thru those gates of Pearls.
My Gram was really special. Her husband died, then a year or so later her son was diagnosed with Multiple Sclerosis. She cared for my Uncle until the day her died, in her house, often by herself. She taught us how to love even when my Uncle was in a vegetative state. We learned to include, to talk about Cubs baseball, since that is all that mattered, and we learned to be sad, and mad and to ask questions. My Uncle Darwin died at the end of his journey, from pneumonia often caused by MS. It was horrible. My Grams had to bury her son, my mom her brother, my cousins their father. There's a pain there I cannot understand. Hero's they all are.
Choices are hard to make, and we can make bad or wrong choices. Some matter, some don't. The right choice can affect any number of people in different ways. I come from a long line of family who are able to make good choices during the hard of life. That same line also make the most ridiculously stupid choices also. Humans…. We all are.
It's sad that Brittany and her family and friends were not given a chance to walk the hard journey of her life. It's sad that they can't respond to her strength of choices of treatment or of living life in spite of knowing she's dying. There are a lot of blessings in those moments, for both the living and the dying. I have proof. The proof will be in the comments below I hope. (on blog page please)
I live differently now. I forget more, but I care more. I love more, and I protect much more. I'm not afraid of speaking my mind much anymore; not afraid to argue. I didn't necessarily have a ton of strong opinions 10 years ago. I'm not afraid to take on teenagers! It's not my favorite, but I'm not afraid. And I am definitely not afraid to stand up for what it morally, ethically and biblically right to do. And it seems Gram may have taught me some of that.
If the choice is right, is within God's will, and will do no harm, it's probably a good one. Take a chance and make a choice. Make a decision. But always choose life. It was given to us as a gift, from a father who sacrificed his own son for us. For Him we can endure anything. Because of Him we can endure anything. In Him we can endure anything. Not always smiling, not always understanding, and often not without anger. He understands all of that because he felt so much more than we can ever imagine.
I have long periods of needing to process new, bad, or complicated information. I know I need to be able to sort thru and understand my options, my truth. My medical team understands that and is careful to give me the truth. I can't get thru my head if I don't have truth. In talking with my oncologist today I mentioned how it's necessary for 'us' to go to the dark places because they are a strong possibility or reality. I said we just have to in order to process so that we can deal so that we can fight. A right mind, and right spirit, and right attitude is half the battle. IT IS. Now matter what the battle. Hard is hard, no matter what your hard is, the process is similar. It is getting progressively more difficult for me to process at a fast pace. But until it's processed, this girl makes no decisions. And this drives my peeps nuts although they understand. I'm sure I'd feel the same if the roles were reversed. I expect that this trend will continue-me needing more time to process. Given that time however gives my heart and soul time to reconnect with God and to believe in winning. It's that simple. I just wish Brittany would have known that and the strength and determination and beauty that can come from a spirit filled with divine fight.
To Grams, for her strength and steadfast faith. For praying for us. For knowing how to love us, and showing what real love is by sacrificing her life for the lives of her husband and son. She wouldn't have seen it as a sacrifice but as her parental duty, her natural instinct to protect and nurse her son to health. Who of us wouldn't do that? My mommy does it every month for me. So when you wonder how I can do this, now you know. It's in my genes. I got some of the best ones available!
Polly on the rise.
Saturday, October 18, 2014
About TIME
The song begs you to believe that time is on your side. Gotta love songs. Their lyrics and melodies bringing truth and life to your heart and soul. Some lyrics giving you permission to act a certain way, to do certain things, to love the one you're with. I can remember events just by hearing a song; takes me right back to the moment and the feelings. Oh the 80's….
I hear people say so often that they can't wait until they get to heaven; how they can't wait until they leave this earth and are with Jesus. I don't know if I am just not a strong Christian or what is wrong with me, but I am not in a hurry to leave this earth. I really enjoy living here, in my house, with our trees and deer, with my babies and the love of my life. I don't want to be away from my family and friends, my neighbors or my long distance friends. I like Earth. It's so big and I've done so little.
Time, it's not on our side. Time keeps on slipping into the future. Time slips away constantly. That is it's purpose. It's a countdown to something special, something important, something life changing. It's the tune on the piano as you walk down the isle, step by step until you reach the alter and your beloved. It's the minutes counting down the contractions until the baby is born. It's putting aside a CT scan so you can go across the ocean to a country you've never been to so you can concentrate on the mission you are on there. And sometimes time has to be stolen for an awesome family vacation to Disney, because for over 6 years of time, vacations have been close to impossible. Cancer stole my time.
My perspective on time has changed so very much since I became a person living with cancer. I don't like to call myself a survivor, altho I have survived 5 times! I'm more of a fighter. God didn't make me an Aries for no reason at all. My Ovarian Cancer will never be cured, unless God performs a miracle, so I have to learn to live with it. It's been a long learning process. I really dug in March 2011 when I went to Chile with my 2 oldest children. Once I understood that they could come with me I literally decided with in 5 minutes that we were going. I knew God wanted us there. Tim has no desire to travel so he was going to help pay for it by working over time. God had it covered tho. We raised all the money we needed plus I got to help the team by donating money from my business. It was so awesome! I took some control over when my next testing would be. I was due for a CT scan before I left to see if my cancer was still in remission. I am one of those people that likes to know ALL of the facts, but I also knew myself well enough to know that if I had that test done I would be no help at all in Chile because I would be a blubber of worry. So, I chose to do no testing until I got home. I told TIME that it wasn't in charge of me for 10 days. Ha, I told time how much time it had….
In spring of 2013 Abbi graduated. My cancer had returned yet again and chemo was on the springtime schedule-or so they thought. There was no way I was going to be ill for her graduation day or her party, so I told TIME I wasn't having chemo until after all of that. Her party was on a Saturday and chemo was on Tuesday.
Then there's this year- what a year. Two visits to the Mayo Clinic and another recurrence. But this time the news was much worse. Tumors, ascites, no clinical trials for me, but chemo just around the corner. That was the beginning of August. Everyone deals with bad news in different ways. I need time to digest, learn and understand as much as possible. The pressure to start chemo right away was pretty heavy. I wanted to wait until the kids were in school. I let TIME rule, and pressure, and scheduled for the 3rd week in August. But God….turns out that He does know me. I ended up with an extra week due to a test I had to have before beginning my new chemo treatments. GOD told TIME it had to wait.
So now, life is back to the chemo schedule. Thankfully this chemo is not as rough on me.
Time…It's not on your side. Take time to make time, make time to be there….. What is your there? Is there something you want to do but feel as if there is a certain amount of time that needs to pass before you can? Waiting until the right time to move? To go to college? To get engaged or married? To travel? To have a baby? Why wait? (Well wait to have the baby until you are married, please-and wait to have sex until you are married, please:)
I don't have time to waste. For me it's a fact of health. For others it's just a fact of life. None of us know when our time is up. So live well. If you know, that you know, that you know God is in charge of the 'thing' then do what He says. There's no time requirement on anything. God doesn't say we have to wait a distinct amount of time to get engaged or married, or to have babies. There's no time requirement. If God says yes, then do it. Just do it. You'll feel empowered and obedient all at the same time.
I have a different take on time… time is precious and I'm choosing to use it for precious people doing things, going places, visiting, forgiving, asking for forgiveness, accepting, helping, walking with others, who are precious to me. Cancer may have taken some time from me, changed how I can live my life physically, but it can't take my will or my faith or my Jesus from me. Oh it's tried-and won once or twice. Thank you Lord for forgiving me. Thank you for the TIME I have here on Earth. And thank you for the time I will someday have with you.
Revelation after writing this: Nothing can take time away. Our day is our day. My day is my day. I simply have to learn how to live out my time differently than I thought I would get to. So careful listening to Him and responding and doing what He says. First thing… vacation! Time well spent. A whole new blog just waiting to be written.
https://www.facebook.com/video.php?v=4145730918031&l=1881439718381546720
click to watch a video. I'm the bald one, doing what I had to do….
I hear people say so often that they can't wait until they get to heaven; how they can't wait until they leave this earth and are with Jesus. I don't know if I am just not a strong Christian or what is wrong with me, but I am not in a hurry to leave this earth. I really enjoy living here, in my house, with our trees and deer, with my babies and the love of my life. I don't want to be away from my family and friends, my neighbors or my long distance friends. I like Earth. It's so big and I've done so little.
My perspective on time has changed so very much since I became a person living with cancer. I don't like to call myself a survivor, altho I have survived 5 times! I'm more of a fighter. God didn't make me an Aries for no reason at all. My Ovarian Cancer will never be cured, unless God performs a miracle, so I have to learn to live with it. It's been a long learning process. I really dug in March 2011 when I went to Chile with my 2 oldest children. Once I understood that they could come with me I literally decided with in 5 minutes that we were going. I knew God wanted us there. Tim has no desire to travel so he was going to help pay for it by working over time. God had it covered tho. We raised all the money we needed plus I got to help the team by donating money from my business. It was so awesome! I took some control over when my next testing would be. I was due for a CT scan before I left to see if my cancer was still in remission. I am one of those people that likes to know ALL of the facts, but I also knew myself well enough to know that if I had that test done I would be no help at all in Chile because I would be a blubber of worry. So, I chose to do no testing until I got home. I told TIME that it wasn't in charge of me for 10 days. Ha, I told time how much time it had….
 |
| Chile |
 |
| Aug. 7, 1993 |
 |
| Sometimes you just have to be a clown. And sometimes the red won't wash out of your hair for weeks. |
In spring of 2013 Abbi graduated. My cancer had returned yet again and chemo was on the springtime schedule-or so they thought. There was no way I was going to be ill for her graduation day or her party, so I told TIME I wasn't having chemo until after all of that. Her party was on a Saturday and chemo was on Tuesday.
Then there's this year- what a year. Two visits to the Mayo Clinic and another recurrence. But this time the news was much worse. Tumors, ascites, no clinical trials for me, but chemo just around the corner. That was the beginning of August. Everyone deals with bad news in different ways. I need time to digest, learn and understand as much as possible. The pressure to start chemo right away was pretty heavy. I wanted to wait until the kids were in school. I let TIME rule, and pressure, and scheduled for the 3rd week in August. But God….turns out that He does know me. I ended up with an extra week due to a test I had to have before beginning my new chemo treatments. GOD told TIME it had to wait.
So now, life is back to the chemo schedule. Thankfully this chemo is not as rough on me.
Time…It's not on your side. Take time to make time, make time to be there….. What is your there? Is there something you want to do but feel as if there is a certain amount of time that needs to pass before you can? Waiting until the right time to move? To go to college? To get engaged or married? To travel? To have a baby? Why wait? (Well wait to have the baby until you are married, please-and wait to have sex until you are married, please:)
I don't have time to waste. For me it's a fact of health. For others it's just a fact of life. None of us know when our time is up. So live well. If you know, that you know, that you know God is in charge of the 'thing' then do what He says. There's no time requirement on anything. God doesn't say we have to wait a distinct amount of time to get engaged or married, or to have babies. There's no time requirement. If God says yes, then do it. Just do it. You'll feel empowered and obedient all at the same time.
I have a different take on time… time is precious and I'm choosing to use it for precious people doing things, going places, visiting, forgiving, asking for forgiveness, accepting, helping, walking with others, who are precious to me. Cancer may have taken some time from me, changed how I can live my life physically, but it can't take my will or my faith or my Jesus from me. Oh it's tried-and won once or twice. Thank you Lord for forgiving me. Thank you for the TIME I have here on Earth. And thank you for the time I will someday have with you.
Revelation after writing this: Nothing can take time away. Our day is our day. My day is my day. I simply have to learn how to live out my time differently than I thought I would get to. So careful listening to Him and responding and doing what He says. First thing… vacation! Time well spent. A whole new blog just waiting to be written.
https://www.facebook.com/video.php?v=4145730918031&l=1881439718381546720
click to watch a video. I'm the bald one, doing what I had to do….
Wednesday, August 27, 2014
F5, we're gonna die!!
As the debris flew across I 275 on our way to the first Cross Country Race Barby and I were, well, just a wee bit concerned. I was looking at this awesome cloud formation, the kind where each cloud is going in a different direction and they were just layered on up into the sky until they met the boss cloud. If that wind had moved in just the right way…. Hence my 'F5, we're gonna die' comment. We laughed, until we got off the interchange and I looked at Barby and asked if it was windy. I knew what the answer was because the trees were, shall we say, doing some yoga. She said yes, as a box blew to the car and we crushed it, debris from who knows where just kept flying by. We waited for a cow, but we were in the city so….. By the time we do get to the park the meet is basically cancelled. Awesome. So we drove home, in much calmer weather. I should add we weren't acting hysterical in the scared sense but we were laughing a lot. Well, until she almost hit the downed branches/trees. Dead trees half way across the road. 'Teri! Tree!!!' Swerve, miss. LOL because I called Barby Teri. It was kinda a fun death defying experience all in all.
So I got to thinking, which is a good thing since I've been so very numb since coming home from the Mayo Clinic a few weeks ago, that truly that drive could have ended tragically. We saw many accidents that did. It just helped me to see that there are a lot of different tragedies in life, I don't own them. I've got one. Many people have so much more.
I know you all want to know about the Mayo visit at the beginning of the month. It was highly tragic and it was an F5 tornado that ripped though our entire beings. Shelly and Teri came with me this time. I had my blood work done and my CT done in the morning then saw Dr. Worwora in the afternoon. A lot had changed since May. One area by my stomach was double in size, I had a lot of growth and new areas throughout the peritoneum and I also had ascites, which is fluid around your organs caused by the cancer. All of this combined puts me into the category of Stage 4. I didn't qualify for any trials. And I truly lost all hope. I know what ascites means. I've read so very much on this. I felt like I was 9 months pregnant because of the fluid build up, so very uncomfortable. I hadn't been able to eat more than a couple bites at a time. Energy level non existent. Could go to church because I just couldn't. I can't really put words to that one. We record what the doctor says, but I haven't been able to listen to it again-yet. Then to learn that I probably need to move on to the second line chemos. I mean each sentence was blow to the heart. Thankfully he could see that I was misbelieving some things. He flat out said he disagrees that this is the END as I called it, and that the 3 meds I get to choose from have great results.
Side note: I understand the meds can have great results. I also understand that you're on them forever, whatever that is for you. I have much doubt in my physical ability to make my forever long. I was rejecting God into any scenario which could clearly be seen by the rolling of my eyes!
The next morning the Dr called me! He called because I asked him the question I ask many doctors, just in case they aren't seeing me as a real live person who still has a family to raise. I asked him if I was his wife, and this was her situation, which of the 3 meds would you want her on? Shelly doesn't think he's ever been asked that. It took a moment and he said the Doxil because like me she would want to be able to do things with the kids and live a somewhat normal life. I said ok then that is what I will do. So he called because he spent the evening making sure there was not a new trial that I could fit into and he was making an appointment for me to have my ascites drained. There is a trial, but unless I move to Minnesota or they allow my care team here to perform it I can't really do it. I really don't want to be in Minnesota in the winter! But I don't have the final answer on that yet.
I went to see my nurse the next week, gave her copies of all the info and we talked, a lot. She confirmed the end is far from this moment. She agreed with the Doxil and Avastin combo, which is a usual next step. The problem with the Doxil is that it can take up to 4 treatments before scans and numbers change. But that's ok. I'm sure it'll be working and I'll be feeling a bit less full of cancer than I do right now.
So I scheduled for Aug. 22. Only 2 weeks after finding out all of this information. Not nearly enough time to do, learn, clean, prepare the way I know I need to before chemo starts. I hadn't even gotten out of the pit yet. I was so sad and shocked and pissed and broken hearted I couldn't process, or move off my chair. Yes you could def say depressed. And yes, I get that it's ok. Don't you worry about whether or not I believe something is ok!! When they called to cancel it because I needed an Echo on my heart to be sure it's working well before I take this med (comforting) I was so relieved! It was the first time it felt like God was back into knowing me. I've come super far this week. I mean I'm not having a party, but I don't roll my eyes when I hear his name. I may not be able to sing but I'm listening. I may scoot out early but its just because….. I don't know what to say any more than you do! And what I have to say really should be said elsewhere, if you know what I mean.
So now I go in on the 29th, if my echo is fine. It took me a few days to settle on a day but I did it. I think that if I start Friday I'll be able to still drive to school the first day, be able to go to curriculum nights for the boys and at least know a little bit about their schooling for this year.
So I will be very honest and tell you the last few weeks have been harder than any other part of this journey, even finding out I have cancer. All that bad news rolled into one hour was too much for me and the girls because we were not expecting so much to be so bad. So if I seemed off, I was, and I will be. I may catch a glimpse of you, but that may be all I can handle. I'll have to be careful of germs again which means no hugging. Really? That's just torture. I can't commit, which is now my way of life when it used to be the opposite.
So, one more day of feeling like half crap then an unknown number of days to feel unknown! Awesome. See, hard to get a grip when you have no idea what is coming.
Me and God, we're tussling. I have my faith but I'm not gonna lie that it falters very often lately. I do a lot of eye rolling, but my head knows the truth. And the only reason I am so scared is family and friends. I suppose the different endings with me as well, but truly there is only one ending. And who knows, it could be an F5, not cancer….. I'm not really as smart as I think I am…..
Thank you all for caring so much. Please keep praying. Also, share this blog if you'd like to. Maybe we can help someone. Ovarian Cancer is so overlooked, under researched, so unknown. Help spread the word.
Vicki
So I got to thinking, which is a good thing since I've been so very numb since coming home from the Mayo Clinic a few weeks ago, that truly that drive could have ended tragically. We saw many accidents that did. It just helped me to see that there are a lot of different tragedies in life, I don't own them. I've got one. Many people have so much more.
I know you all want to know about the Mayo visit at the beginning of the month. It was highly tragic and it was an F5 tornado that ripped though our entire beings. Shelly and Teri came with me this time. I had my blood work done and my CT done in the morning then saw Dr. Worwora in the afternoon. A lot had changed since May. One area by my stomach was double in size, I had a lot of growth and new areas throughout the peritoneum and I also had ascites, which is fluid around your organs caused by the cancer. All of this combined puts me into the category of Stage 4. I didn't qualify for any trials. And I truly lost all hope. I know what ascites means. I've read so very much on this. I felt like I was 9 months pregnant because of the fluid build up, so very uncomfortable. I hadn't been able to eat more than a couple bites at a time. Energy level non existent. Could go to church because I just couldn't. I can't really put words to that one. We record what the doctor says, but I haven't been able to listen to it again-yet. Then to learn that I probably need to move on to the second line chemos. I mean each sentence was blow to the heart. Thankfully he could see that I was misbelieving some things. He flat out said he disagrees that this is the END as I called it, and that the 3 meds I get to choose from have great results.
Side note: I understand the meds can have great results. I also understand that you're on them forever, whatever that is for you. I have much doubt in my physical ability to make my forever long. I was rejecting God into any scenario which could clearly be seen by the rolling of my eyes!
The next morning the Dr called me! He called because I asked him the question I ask many doctors, just in case they aren't seeing me as a real live person who still has a family to raise. I asked him if I was his wife, and this was her situation, which of the 3 meds would you want her on? Shelly doesn't think he's ever been asked that. It took a moment and he said the Doxil because like me she would want to be able to do things with the kids and live a somewhat normal life. I said ok then that is what I will do. So he called because he spent the evening making sure there was not a new trial that I could fit into and he was making an appointment for me to have my ascites drained. There is a trial, but unless I move to Minnesota or they allow my care team here to perform it I can't really do it. I really don't want to be in Minnesota in the winter! But I don't have the final answer on that yet.
I went to see my nurse the next week, gave her copies of all the info and we talked, a lot. She confirmed the end is far from this moment. She agreed with the Doxil and Avastin combo, which is a usual next step. The problem with the Doxil is that it can take up to 4 treatments before scans and numbers change. But that's ok. I'm sure it'll be working and I'll be feeling a bit less full of cancer than I do right now.
So I scheduled for Aug. 22. Only 2 weeks after finding out all of this information. Not nearly enough time to do, learn, clean, prepare the way I know I need to before chemo starts. I hadn't even gotten out of the pit yet. I was so sad and shocked and pissed and broken hearted I couldn't process, or move off my chair. Yes you could def say depressed. And yes, I get that it's ok. Don't you worry about whether or not I believe something is ok!! When they called to cancel it because I needed an Echo on my heart to be sure it's working well before I take this med (comforting) I was so relieved! It was the first time it felt like God was back into knowing me. I've come super far this week. I mean I'm not having a party, but I don't roll my eyes when I hear his name. I may not be able to sing but I'm listening. I may scoot out early but its just because….. I don't know what to say any more than you do! And what I have to say really should be said elsewhere, if you know what I mean.
So now I go in on the 29th, if my echo is fine. It took me a few days to settle on a day but I did it. I think that if I start Friday I'll be able to still drive to school the first day, be able to go to curriculum nights for the boys and at least know a little bit about their schooling for this year.
So I will be very honest and tell you the last few weeks have been harder than any other part of this journey, even finding out I have cancer. All that bad news rolled into one hour was too much for me and the girls because we were not expecting so much to be so bad. So if I seemed off, I was, and I will be. I may catch a glimpse of you, but that may be all I can handle. I'll have to be careful of germs again which means no hugging. Really? That's just torture. I can't commit, which is now my way of life when it used to be the opposite.
So, one more day of feeling like half crap then an unknown number of days to feel unknown! Awesome. See, hard to get a grip when you have no idea what is coming.
Me and God, we're tussling. I have my faith but I'm not gonna lie that it falters very often lately. I do a lot of eye rolling, but my head knows the truth. And the only reason I am so scared is family and friends. I suppose the different endings with me as well, but truly there is only one ending. And who knows, it could be an F5, not cancer….. I'm not really as smart as I think I am…..
Thank you all for caring so much. Please keep praying. Also, share this blog if you'd like to. Maybe we can help someone. Ovarian Cancer is so overlooked, under researched, so unknown. Help spread the word.
Vicki
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