We are approaching the end of another school year! 2 1/2 more weeks and Matt will be home for the summer. Woohoo! Klaus will have finished kindergarten (our first public schooler!) He loves school so much and wants to go back for more in 1st grade! I want to just catch up on everyone.
Matt had clear scans in February; next scans are in June. He enjoyed a period of being pain-free for the most part, but the achy, annoying, frustrating pain in his leg is back. :( It's really bothersome and he has to learn to manage it and not knowing why it's happening is hard to deal with, but he's dealing. There's nothing much else to do about it, is there? It really takes faith not to turn into a hypochondriac after you've been diagnosed with cancer. Other than that, he is doing well. He is considering the possibility of going back to school to get his masters degree. We'll see if he is inspired to do that or not. I support him either way.
I've been super busy juggling work responsibilities now that I've put my real estate license into activity. I am officially a realtor now and I have 1 client and 3 customers who I am helping to buy a house. There is so much to learn and everything takes me a lot of time behind the scenes. I really enjoy it. I am just learning how to juggle home, school and work. Thankfully the kids and Matt are all really supportive. I wake up EARLY to squeeze in exercise, prayer, scripture study, journaling and getting ready for the day. I've decided to train for a half-marathon instead of a marathon. If I can run for 13 miles, I feel like that's good enough. Truly. The point of exercise is health!
Our school year this year has been great. We've really gotten disciplined and focused. The girls are doing multiple math lessons each day to catch up where they got behind from last year. Ella has already finished her English for the year. Abby's already doing high school level English. They all read so much! We are studying American Sign Language and poetry together during our devotional. We study music appreciation once a week. Felicity takes piano lessons from me once a week. I also teach another student, a 13-year-old friend of Kian's. Kian has been working really hard this year. We've created a high school transcript for him and have his junior year all planned out too. Technically, he could graduate a year early if he wants to. The plan is for him to get a super high ACT score so that he can get a full-ride scholarship to the college of his choice. At this point, he is considering BYU and MUST (Missouri University of Science & Technology). He's gotten a lot of great coaching from his physics tutor about college prep and colleges to consider. I think he wants to go to BYU most of all but we'll take some campus tours in the next year.
Kian will be turning 16 in 2 1/2 weeks as well! He's been getting a lot of driving time practice to be ready for his test. He loves seminary and all of the youth activities he is involved in. He still claims not to be interested in girls but I don't believe him. He has actually found a new hobby in singing. I never thought that would be possible but he practices singing and during our ward talent show when the homeschool choir sang "Do Re Mi" from the Sound of Music, he was the one in the whole group doing the most hand movements and acting the most relaxed and silly of all of them. He loves eating and he is growing slowly. He takes a parkour class at the local dance academy.
Abby is always reading or listening to a book! She loves the Greek and Roman myths and she knows about all of them! She is our house dishwasher (that is her jurisdiction). Believe me, it's a lot of dishes! She retreats into her room for privacy and solitude more than any of my children. She enjoys junk food, but at least now I hear her tell me, "I'm going to let my kids eat some junk food some of the time." It used to be, "I'm going to let my kids eat whatever they want!" She wears her blondish brown wavy hair long. She hates it pulled up. She has started ballet, jazz and tap dance classes this year which she enjoys.
Ella is always reading or listening to a book! She and Maggie are best buddies. She loves her short hair. She loves reading books about dragons and has started drawing them. She loves to play. She is taking ballet and jazz for dance.
Felicity is enjoying soccer this season. Remember when she used to be shy? She's not anymore! She played a song on the piano for our ward talent show. She cries a lot like her life is so hard. It's hard to deal with her gloominess sometimes. She wants to be able to babysit Maggie so badly but right now she can be a mother's helper. She is taking a ballet class.
Klaus is doing great at school. At home, he pushes my buttons so easily that there are days I truly can't get along with him. He is naturally rebellious and argumentative. He just disagrees with everyone!! But he's also very loving and sensitive. He bore his testimony to us the other night about how Jesus doesn't want us to eat sugar. It was so great-we were all hiding our laughter! He is also playing soccer this year and soon will be playing T-ball again.
Maggie is 2 and talking a lot more and singing songs. She goes on the potty whenever I let her keep her diaper off. She has a hair fetish where she'll grab your hair and rub it against her ear. It used to be just my hair she wanted, but she'll grab ahold of other people's hair now! She is cuddly and generally happy unless she doesn't get what she wants. She'll yell at her siblings, "Leave me alone!" Or she'll stomp her foot at me in anger. She can say prayers now all by herself. Everybody adores her.
This summer we actually don't have a lot of plans. We do have a trip to California that we're looking forward to where we'll get to visit with Matt's family and my Dad and friends at the end of July. And we're planning a Cousins Camp with my side of the family at the beginning of August here in Missouri. But May and June are wide open at this point!
We are enjoying our new house. It's comfortable. It's nice that the kids have the upstairs and parents have the downstairs. We actually like living in town. It's so convenient.
That's all I can think of to keep y'all updated!
Sunday, April 30, 2017
Thursday, January 5, 2017
A Reminder
After a few months of Matt showing clear scans and no evidence of cancer in his body, I was feeling positive about his (our) future. I felt hopeful that God would grant us several years of health. I hoped for him to be alive as long as possible, as healthy as possible, and to continue to be my partner and that we could raise our children together. I especially felt that our loving Heavenly Father would not leave one of his children, specifically Klaus, without a father because Klaus needs his father so much on a daily basis. I told Matt's mother recently, "My hope is that Matt will be around as long as Klaus needs him."
But we were given a humble reminder this past week when we visited Matt's medical oncologist for a follow up appointment. There was nothing new on physical examination. And scans were scheduled in February. But when we asked him some questions about Matt's specific cancer, which is epithelioid sarcoma, he reiterated to us the rarity of the disease and its sporadic, unstable, unpredictable nature of recurrence. He calls it a "bad actor."
"We've had six patients with this specific disease in the last five years. Do you think that is a lot or a little?" he asked us.
I replied, "That seems like a very small amount of patients with ES."
"No," he answered, "It's actually a lot."
When I reviewed Matt's notes from his first visit to his surgical oncologist, Dr. Rosenthal, he had told us there are 12 cases of this disease per year in the entire country.
We get the feeling when we visit Dr. Myron that he wants us to go travel, that he encourages us to go and do those things that we want to enjoy in life. Is it because he knows there will only be a little time that Matt will be well enough to do these activities?
I asked him, "How are your other patients with ES doing?" He paused. He looked at me. He smiled. And he completely avoided my question.
He doesn't like Matt's experience with the residual pain in his behind. He calls it sinister and he is as uneasy about it as Matt is himself.
Dr. Myron is aggressive in his monitoring for recurrence.
"Are you this cautious with all of your sarcoma patients?" I asked.
He answered with another reply about how dangerous this specific sarcoma can be.
We left the appointment with heavy hearts and a sense of doom and hopelessness. I cried as soon as I left the building.
"I was feeling so hopeful. I was counting on many more years together. And now I feel like we're lucky to have had this long," I cried to Matt.
We had a heartfelt conversation on our way to Ikea. (Hey, if we were all the way in Overland Park, Kansas which is an hour and a half away, we might as well stop at Ikea for some lingonberry juice--which they didn't have!)
Matt expressed his underlying gut feeling that something is not right inside of his body and the realization that he won't get an answer for the pain he is experiencing. He is never able to forget about the cancer because the pain is always there to remind him.
He explained to me. "It's like me asking you to forget being pregnant, if you were pregnant. Would you be able to? Could you forget about the morning sickness, the fatigue, the aches and pains, the emotions, etc.?"
"Of course not," I replied. "When I'm pregnant, I'm constantly thinking about it."
It's hard to balance the feelings I'm feeling: the reality of the statistics, the hope that comes when I forget about the statistics, the sense of doom from the doctor, the knowledge of a loving Heavenly Father who cares for Matt and for me and our family, the possibility that Matt will die from this disease, and the enjoyment of this current period of health.
Since the appointment, I've had to talk to family and friends about it and pray about it. Tears will leak out of my eyes at inappropriate moments. But I know that doesn't matter. I'm just trying to process the information and learn how to balance the feelings: the knowledge and the hope.
I texted my friend with a realization which I later recognized was an attitude of submission. "I don't need to fight against it as a possibility, that he might die from this disease. I've had a warning. His gut feeling is that something is not right. He is aware of it constantly because of the pain. His doctor is sooooo cautious about it. I think we need to come to accept it. Somehow. And then just be glad for his health till it happens. It feels morbid and pessimistic (to plan on the cancer recurring) but then on the other hand, God gives us revelation which we should listen to and no matter the outcome there's no reason to lose hope."
My dad has mentioned several times to us, especially at the beginning of this ordeal, that all we have to do anymore is submit to His will. I think I'm starting to get it. I can try to convince God that my plan is better, that I love Matt and I need him to stay healthy, that Klaus will be devastated without his Daddy, that it's unfair to Matt's mother to take another son away early, but I recognize now that all of that is a feeble attempt by me to control what isn't mine to control. I must let God be in charge of what is His to give and simply show gratitude for each and every precious moment of life.
We will make the effort now to live our lives fully, to make family memories, to take family vacations. And I will pray that my heart can open to accept God's will and praise Him for His blessings. There is a sense of peace that settles on my mind and heart when I do in fact submit my will to His.
But we were given a humble reminder this past week when we visited Matt's medical oncologist for a follow up appointment. There was nothing new on physical examination. And scans were scheduled in February. But when we asked him some questions about Matt's specific cancer, which is epithelioid sarcoma, he reiterated to us the rarity of the disease and its sporadic, unstable, unpredictable nature of recurrence. He calls it a "bad actor."
"We've had six patients with this specific disease in the last five years. Do you think that is a lot or a little?" he asked us.
I replied, "That seems like a very small amount of patients with ES."
"No," he answered, "It's actually a lot."
When I reviewed Matt's notes from his first visit to his surgical oncologist, Dr. Rosenthal, he had told us there are 12 cases of this disease per year in the entire country.
We get the feeling when we visit Dr. Myron that he wants us to go travel, that he encourages us to go and do those things that we want to enjoy in life. Is it because he knows there will only be a little time that Matt will be well enough to do these activities?
I asked him, "How are your other patients with ES doing?" He paused. He looked at me. He smiled. And he completely avoided my question.
He doesn't like Matt's experience with the residual pain in his behind. He calls it sinister and he is as uneasy about it as Matt is himself.
Dr. Myron is aggressive in his monitoring for recurrence.
"Are you this cautious with all of your sarcoma patients?" I asked.
He answered with another reply about how dangerous this specific sarcoma can be.
We left the appointment with heavy hearts and a sense of doom and hopelessness. I cried as soon as I left the building.
"I was feeling so hopeful. I was counting on many more years together. And now I feel like we're lucky to have had this long," I cried to Matt.
We had a heartfelt conversation on our way to Ikea. (Hey, if we were all the way in Overland Park, Kansas which is an hour and a half away, we might as well stop at Ikea for some lingonberry juice--which they didn't have!)
Matt expressed his underlying gut feeling that something is not right inside of his body and the realization that he won't get an answer for the pain he is experiencing. He is never able to forget about the cancer because the pain is always there to remind him.
He explained to me. "It's like me asking you to forget being pregnant, if you were pregnant. Would you be able to? Could you forget about the morning sickness, the fatigue, the aches and pains, the emotions, etc.?"
"Of course not," I replied. "When I'm pregnant, I'm constantly thinking about it."
It's hard to balance the feelings I'm feeling: the reality of the statistics, the hope that comes when I forget about the statistics, the sense of doom from the doctor, the knowledge of a loving Heavenly Father who cares for Matt and for me and our family, the possibility that Matt will die from this disease, and the enjoyment of this current period of health.
Since the appointment, I've had to talk to family and friends about it and pray about it. Tears will leak out of my eyes at inappropriate moments. But I know that doesn't matter. I'm just trying to process the information and learn how to balance the feelings: the knowledge and the hope.
I texted my friend with a realization which I later recognized was an attitude of submission. "I don't need to fight against it as a possibility, that he might die from this disease. I've had a warning. His gut feeling is that something is not right. He is aware of it constantly because of the pain. His doctor is sooooo cautious about it. I think we need to come to accept it. Somehow. And then just be glad for his health till it happens. It feels morbid and pessimistic (to plan on the cancer recurring) but then on the other hand, God gives us revelation which we should listen to and no matter the outcome there's no reason to lose hope."
My dad has mentioned several times to us, especially at the beginning of this ordeal, that all we have to do anymore is submit to His will. I think I'm starting to get it. I can try to convince God that my plan is better, that I love Matt and I need him to stay healthy, that Klaus will be devastated without his Daddy, that it's unfair to Matt's mother to take another son away early, but I recognize now that all of that is a feeble attempt by me to control what isn't mine to control. I must let God be in charge of what is His to give and simply show gratitude for each and every precious moment of life.
We will make the effort now to live our lives fully, to make family memories, to take family vacations. And I will pray that my heart can open to accept God's will and praise Him for His blessings. There is a sense of peace that settles on my mind and heart when I do in fact submit my will to His.
Sunday, September 18, 2016
1-year Cancerversary
It's been one year since Matt was diagnosed with epithelioid sarcoma. What a year filled with trials this last one has been. Here's an update on the cancer situation.
The abscess-like growth that got spotted on his scans in May was biopsied and even though we were 95% sure it was a return of the cancer, it turned out to be scar tissue. That felt like a miracle. Our ward family fasted for him and we got the news a couple days later. While everyone else felt relieved, we still felt cautious. It was odd that we couldn't also feel like we had beat it.
We were able, however, to thoroughly enjoy our 2-week Washington DC trip. That vacation was amazing. Spending the 4th of July in our nation's capital should be a must for every citizen. My favorite was visiting Mount Vernon. And Monticello. And walking through the city. The kids favorite was eating ice cream every afternoon to help deal with the heat.
Ok, back to the cancer situation. For most of the summer Matt has felt well. The pain was manageable. Life went on. Busy, busy, busy. But in the past 2 weeks the pain has returned. In fact, it has intensified. Over-the-counter painkillers aren't touching it. Vicodin helps but he still feels it somehow. The pain started out in the area of the surgery and the back of his thigh but now he feels it in his whole upper leg and even down to his foot. When I rubbed his lower back the other day he said it made it hurt in his leg. What is the cause of this pain is our biggest question.
He had his scans last Thursday and his appointment with Dr. Myron is this Tuesday so we hope to get some answers.
* What do the scans show?
* Did the abscess-like tumor that was biopsied as scar tissue grow?
* What is causing the pain?
* Could there be metastases in the bone?
* How can he manage the pain?
We hope this appointment will answer these questions. We hope he gets feeling better.
Other than that, we are finding ourselves in a unique situation between homes. We moved out of our old house at the end of July. We have been living in the travel trailer as we search for a new one. The whole house buying process is taking so much longer than we expected. And living in the travel trailer is wearing on us. Abby said this morning, "Only 26 more days!" She was referring until our closing date. 26 more days?! I thought it would be 26 more days a month ago.
We had a hard time finding a house that we liked. We actually offered and backed out of two other deals until we found this third one. I think it'll suit our family well. It's a 2-story very old white farmhouse type home on the west side of town almost at the city limit. It's got a fair yard in front of the home but the home is on the corner of two fairly busy streets. At the side of the property is a veterinarian. At the back is a home that looks abandoned. There is no garage. The home itself, though, has been nicely remodeled and updated. There is a huge living room with ample space for our whole family to gather and be comfortable. The remodeled kitchen is open to the living room and has beautiful appliances which will stay. The dining room is on the other side of the kitchen. It is spacious with high ceilings. The laundry room used to be a porch and is on the side of the house. The main level bathroom is also off the kitchen and connects to the master bedroom which is a huge suite nicely redone.
Upstairs are three more bedrooms so the kids will share with one sibling each and a good-sized bathroom with double sinks which should fit teenagers getting ready. We'll have a lot of those soon enough. There is a lot of porch space. I think it'll work. I just hope the age of the home doesn't make it a money pit.
So there you have an update. We wait for the doctor appointment. And we wait to move in to our new house.
The abscess-like growth that got spotted on his scans in May was biopsied and even though we were 95% sure it was a return of the cancer, it turned out to be scar tissue. That felt like a miracle. Our ward family fasted for him and we got the news a couple days later. While everyone else felt relieved, we still felt cautious. It was odd that we couldn't also feel like we had beat it.
We were able, however, to thoroughly enjoy our 2-week Washington DC trip. That vacation was amazing. Spending the 4th of July in our nation's capital should be a must for every citizen. My favorite was visiting Mount Vernon. And Monticello. And walking through the city. The kids favorite was eating ice cream every afternoon to help deal with the heat.
Ok, back to the cancer situation. For most of the summer Matt has felt well. The pain was manageable. Life went on. Busy, busy, busy. But in the past 2 weeks the pain has returned. In fact, it has intensified. Over-the-counter painkillers aren't touching it. Vicodin helps but he still feels it somehow. The pain started out in the area of the surgery and the back of his thigh but now he feels it in his whole upper leg and even down to his foot. When I rubbed his lower back the other day he said it made it hurt in his leg. What is the cause of this pain is our biggest question.
He had his scans last Thursday and his appointment with Dr. Myron is this Tuesday so we hope to get some answers.
* What do the scans show?
* Did the abscess-like tumor that was biopsied as scar tissue grow?
* What is causing the pain?
* Could there be metastases in the bone?
* How can he manage the pain?
We hope this appointment will answer these questions. We hope he gets feeling better.
Other than that, we are finding ourselves in a unique situation between homes. We moved out of our old house at the end of July. We have been living in the travel trailer as we search for a new one. The whole house buying process is taking so much longer than we expected. And living in the travel trailer is wearing on us. Abby said this morning, "Only 26 more days!" She was referring until our closing date. 26 more days?! I thought it would be 26 more days a month ago.
We had a hard time finding a house that we liked. We actually offered and backed out of two other deals until we found this third one. I think it'll suit our family well. It's a 2-story very old white farmhouse type home on the west side of town almost at the city limit. It's got a fair yard in front of the home but the home is on the corner of two fairly busy streets. At the side of the property is a veterinarian. At the back is a home that looks abandoned. There is no garage. The home itself, though, has been nicely remodeled and updated. There is a huge living room with ample space for our whole family to gather and be comfortable. The remodeled kitchen is open to the living room and has beautiful appliances which will stay. The dining room is on the other side of the kitchen. It is spacious with high ceilings. The laundry room used to be a porch and is on the side of the house. The main level bathroom is also off the kitchen and connects to the master bedroom which is a huge suite nicely redone.
Upstairs are three more bedrooms so the kids will share with one sibling each and a good-sized bathroom with double sinks which should fit teenagers getting ready. We'll have a lot of those soon enough. There is a lot of porch space. I think it'll work. I just hope the age of the home doesn't make it a money pit.
So there you have an update. We wait for the doctor appointment. And we wait to move in to our new house.
Thursday, June 16, 2016
BUSY!
Things have been busy around the Musser household. It feels like it has been so long since I've posted that I don't know where to start or how to organize my thoughts.
Most importantly, Matt's MRI yesterday caught something questionable in the same area of his prior surgery, but the doctors aren't sure what it is yet. Matt's had a bad feeling about it for almost a month. He went in to the doctor for a CT of the chest in May but they had not ordered the MRI and CT of the pelvis and abdominal region. At his visit in May, he visited with Dr. Myron after his chest scan (which was clear of disease) and Dr. Myron apologized for the mistake of not getting all of the appropriate scans ordered. He listened to Matt's symptoms and appeared concerned about them but on physical examination couldn't observe any problems.
What is strange is that on that very night after Matt's appointment in May he began noticing pain in the same area when sitting which he described exactly like the first pain he felt when he first had a tumor. We knew that was NOT a sign of anything good. We waited to see if it would go away, which it didn't. We questioned how bad the pain was on a pain scale, which was higher than the normal 1 or 2 he feels on a regular basis. We tried to ignore it longer. We knew his next scans weren't for a few weeks (those are the ones he had yesterday) and debated whether to call the doctor and get an appointment sooner. But again and again, Matt felt like the best course of action would be to wait till June 15th.
We could feel something there that didn't feel normal. It is like an area of hardness that hurts when you press it but it is deeper under the skin than the first time. I tried and tried to feel a tumor-like shape, but I never could. I often found him rubbing his bum cheek trying to figure out what was wrong. I told him, you better not do that in public!
So, now we know something fishy is going on. Dr. Myron called him as soon as we arrived home and delivered the news that there is something there but couldn't yet determine what it is. He mentioned that it could be an abscess. But that is hard for Matt or I to believe because this whole stupid cancer thing started with his surgeon thinking that the tumor was an abscess. Dr. Myron is referring Matt back to his two oncological surgeons who have well cared for Matt in the past. We hope to hear from one of them very soon. Maybe they will biopsy it. Maybe they will cut it out. Maybe they will wait it out (that would be torture).
In the meantime, things have been VERY busy at home. Last month we closed on our Spanish Fork house. That is a relief because we don't have the energy to focus on that "project" anymore. We also got our house here in Missouri ready to sell. Our contractor finished the beautiful 3-car garage which is now attached to the house. We installed new flooring in half of the house. We removed wallpaper and painted most of the interior including all doors and windows and trim. We majorly decluttered and got it ready to show. We listed it with a local realtor on Monday and it sold on Wednesday! Full price offer! It happened so fast I felt stunned for a while but it is a 45-day closing so we still have time to figure out what our next move is.
While all of that has been going on, I took a 6-day real estate course to get my real estate license. That was SO fun and interesting! I took my test this week and passed! I have a 3-day course next week and then I will be able to apply for my license! I don't know if I will work as a real estate salesperson or use it solely for my own flipping business, but I am so excited to crunch numbers and analyze deals and help people (including ourselves) find a new home to live in! Our move-out date is July 28.
Also, in the past month we took a 4-day vacation to Southern Missouri including Branson. We met with a man who lives in Branson who Matt taught on his mission and baptized! That was cool. We stayed at a state park and Felicity made a friend with a girl from another camping family. They were so cute playing till it was so dark we couldn't see anymore. We visited museums, we went to a fish hatchery, we toured Laura Ingalls Wilder's home where she wrote all of the Little House books which Felicity loves. Each of us took turns with a stomach flu that week but thankfully Maggie caught it the night before we left and didn't erupt in the car while traveling. We also got to experience the excitement of our Suburban stalling out on us several times while pulling our travel trailer and buying a new fuel pump while on vacation. But amazingly, our travel plans never really got interrupted and we just dealt with each hiccup as they came.
If I hadn't mentioned before, we bought a travel trailer! It sleeps 8-9 and it was taken care of so well by the previous owner that even though it is 2007, it looks and feels brand new. Matt has always wanted one because his family grew up traveling in one. It has a tiny bathroom and a kitchen. It has a bunk bed with a double bed on bottom for Ella and Maggie (Felicity and Klaus on top). It has a dining room table that changes into a bed for Abby. Kian sleeps on the couch that folds out into a bed. And it has a "bedroom" with a bed for Matt and I. There is lots of cabinet space. The kids and I loved it!
The morning after arriving home from that vacation, Matt was on his laptop planning the next trip! From June 27 through July 9 we will be traveling to and from Washington D.C!
Klaus has started T-ball. He has a rough and tough-appearing and sounding couch that at first I was afraid he would be too harsh on the kids. It turns out, Coach Donnie is patient and caring and teaches the kids well! Klaus is loving it. And I am really impressed with the YMCA program!
Abby, Felicity and Kian go to play practice EVERY NIGHT except Sunday. Matt and I take Ella, Klaus and Maggie to the park or to the tennis court or for a walk while we wait for the other kids. It is getting so hot though, we might have to find somewhere to go indoors.
Abby went to Girls Camp for her first time. She actually had to come home for a day or two because of Strep throat but she did go back up when her doctor told her she could. Kian is at Scout Camp this week. Matt went up this morning to stay for a couple of days. It is HOT!
The kids have all had various sickies over the past month. Some had Strep throat but got over it on their own. Maggie has a fever today but I'm not sure what it is...
So, life is BUSY!
Most importantly, Matt's MRI yesterday caught something questionable in the same area of his prior surgery, but the doctors aren't sure what it is yet. Matt's had a bad feeling about it for almost a month. He went in to the doctor for a CT of the chest in May but they had not ordered the MRI and CT of the pelvis and abdominal region. At his visit in May, he visited with Dr. Myron after his chest scan (which was clear of disease) and Dr. Myron apologized for the mistake of not getting all of the appropriate scans ordered. He listened to Matt's symptoms and appeared concerned about them but on physical examination couldn't observe any problems.
What is strange is that on that very night after Matt's appointment in May he began noticing pain in the same area when sitting which he described exactly like the first pain he felt when he first had a tumor. We knew that was NOT a sign of anything good. We waited to see if it would go away, which it didn't. We questioned how bad the pain was on a pain scale, which was higher than the normal 1 or 2 he feels on a regular basis. We tried to ignore it longer. We knew his next scans weren't for a few weeks (those are the ones he had yesterday) and debated whether to call the doctor and get an appointment sooner. But again and again, Matt felt like the best course of action would be to wait till June 15th.
We could feel something there that didn't feel normal. It is like an area of hardness that hurts when you press it but it is deeper under the skin than the first time. I tried and tried to feel a tumor-like shape, but I never could. I often found him rubbing his bum cheek trying to figure out what was wrong. I told him, you better not do that in public!
So, now we know something fishy is going on. Dr. Myron called him as soon as we arrived home and delivered the news that there is something there but couldn't yet determine what it is. He mentioned that it could be an abscess. But that is hard for Matt or I to believe because this whole stupid cancer thing started with his surgeon thinking that the tumor was an abscess. Dr. Myron is referring Matt back to his two oncological surgeons who have well cared for Matt in the past. We hope to hear from one of them very soon. Maybe they will biopsy it. Maybe they will cut it out. Maybe they will wait it out (that would be torture).
In the meantime, things have been VERY busy at home. Last month we closed on our Spanish Fork house. That is a relief because we don't have the energy to focus on that "project" anymore. We also got our house here in Missouri ready to sell. Our contractor finished the beautiful 3-car garage which is now attached to the house. We installed new flooring in half of the house. We removed wallpaper and painted most of the interior including all doors and windows and trim. We majorly decluttered and got it ready to show. We listed it with a local realtor on Monday and it sold on Wednesday! Full price offer! It happened so fast I felt stunned for a while but it is a 45-day closing so we still have time to figure out what our next move is.
While all of that has been going on, I took a 6-day real estate course to get my real estate license. That was SO fun and interesting! I took my test this week and passed! I have a 3-day course next week and then I will be able to apply for my license! I don't know if I will work as a real estate salesperson or use it solely for my own flipping business, but I am so excited to crunch numbers and analyze deals and help people (including ourselves) find a new home to live in! Our move-out date is July 28.
Also, in the past month we took a 4-day vacation to Southern Missouri including Branson. We met with a man who lives in Branson who Matt taught on his mission and baptized! That was cool. We stayed at a state park and Felicity made a friend with a girl from another camping family. They were so cute playing till it was so dark we couldn't see anymore. We visited museums, we went to a fish hatchery, we toured Laura Ingalls Wilder's home where she wrote all of the Little House books which Felicity loves. Each of us took turns with a stomach flu that week but thankfully Maggie caught it the night before we left and didn't erupt in the car while traveling. We also got to experience the excitement of our Suburban stalling out on us several times while pulling our travel trailer and buying a new fuel pump while on vacation. But amazingly, our travel plans never really got interrupted and we just dealt with each hiccup as they came.
If I hadn't mentioned before, we bought a travel trailer! It sleeps 8-9 and it was taken care of so well by the previous owner that even though it is 2007, it looks and feels brand new. Matt has always wanted one because his family grew up traveling in one. It has a tiny bathroom and a kitchen. It has a bunk bed with a double bed on bottom for Ella and Maggie (Felicity and Klaus on top). It has a dining room table that changes into a bed for Abby. Kian sleeps on the couch that folds out into a bed. And it has a "bedroom" with a bed for Matt and I. There is lots of cabinet space. The kids and I loved it!
The morning after arriving home from that vacation, Matt was on his laptop planning the next trip! From June 27 through July 9 we will be traveling to and from Washington D.C!
Klaus has started T-ball. He has a rough and tough-appearing and sounding couch that at first I was afraid he would be too harsh on the kids. It turns out, Coach Donnie is patient and caring and teaches the kids well! Klaus is loving it. And I am really impressed with the YMCA program!
Abby, Felicity and Kian go to play practice EVERY NIGHT except Sunday. Matt and I take Ella, Klaus and Maggie to the park or to the tennis court or for a walk while we wait for the other kids. It is getting so hot though, we might have to find somewhere to go indoors.
Abby went to Girls Camp for her first time. She actually had to come home for a day or two because of Strep throat but she did go back up when her doctor told her she could. Kian is at Scout Camp this week. Matt went up this morning to stay for a couple of days. It is HOT!
The kids have all had various sickies over the past month. Some had Strep throat but got over it on their own. Maggie has a fever today but I'm not sure what it is...
So, life is BUSY!
Sunday, April 17, 2016
April Update
A month has passed. Life is so full and busy! I know everyone is waiting for an update so here it is.
Matt went back to the doctor because of the increasing pain and redness at the site. We thought it was developing an infection again. His doctor didn't think so because he really couldn't see anything clinically that indicated infection. He felt the pain might be normal from the healing process. I wasn't convinced. The doctor did start him on antibiotics again, however, because "it won't cause harm." So Matt took 2 more weeks of his double antibiotics (Flagyl and Levaquin).
By the way, how much antibiotics is too much antibiotics? We are warned of giving children too frequent antibiotics because they will develop a resistance. Is this not the case for Matt? My friend whose father passed away from cancer comments that doctors will give cancer patients any amount of medications they want because they are not thinking long-term. They are thinking of making the patient comfortable for the here and now. Her father was taking LOADS of painkillers. Another friend of ours is taking such strong pain medicine through a continuous pump to handle the pain from her cancer that she can't tolerate her treatment procedures done at the hospital without excruciating pain because the standard amount of pain meds they give to help with the procedure don't get anywhere near the amount that she needs to handle the pain. The point is, I wonder how many meds are appropriate in this instance. It is something I should ask the doctor.
We are now a week or two after finishing the most recent dose of antibiotics and he is doing alright. He seems to be in pain consistently but it is a 1 or 2 on a scale from 1 to 10. I worry when he crashes asleep at 9 at night because that is very unusual for him. I worry when he gets to sleep in but he still feels tired during the day. I worry when he tells Abby (after he has swatted her bottom), "No! Don't hit me there! It hurts!"
Is this level of pain and tiredness normal? Or do they indicate developing infection? We know now not to present to the doctor unless it is very clear that infection is occurring. I asked him at the last visit, "What if the infection does recur? What is the plan then?" (Matt is at the last stretch of school for the year. He is in the middle of testing and has about 4 or 5 weeks remaining. We want him well enough to finish the year.) The doctor's response was that if he presented with recurrent infection, he would put him back on antibiotics but for a longer term, a month instead of 2 weeks. I actually feel good about this because the antibiotics do work against the infection and we know that he will be able to finish the year without interruption.
He has his next set of scans scheduled for May 23rd when school will already be over for the year. We are planning a family vacation afterward so that we can celebrate clear scans! Positive thinking! This time, his oncologist has ordered a CT scan of the chest as well as a PET scan to check for metastasis anywhere in his body. We pray for clear scans!!!
The rest of us stay busy all day with home school. The kids are working so hard (and Momma too!) to get their work caught up, even if it means writing 2 English essays a day and an hour of math plus their other subjects. The computer is in use pretty much every minute of the day whether Ella is doing math on Khan Academy or Abby is writing an essay or Ella is doing her English. Just keeping track of everyone's schooling is a full-time job!
In addition to school at home, the kids are in a Drama Club with other homeschooling families. We are in an informal running club to get in shape for Matt's upcoming 5K fundraiser. Kian attends a physics class from a friend teaching her own kids the subject. We are busy with many great things.
I feel the need to get our house ready to sell by mid-May. I am researching to be sure there will be a house big enough for us to move into that is also within our price range! Did I mention that our house here in Missouri got flooded during the process of repairing from the fire?! I woke up after a night of pouring rain to slosh, slosh, slosh as I stepped through the living room! So now we are removing the carpet from the living room as well! Our home in Utah is under contract. That is good news! In our home here we now have repaired kitchen walls and ceilings now but are still waiting for the garage to get built. In the meantime, the kids thoroughly enjoy riding bikes and scooters on the new concrete poured onto the old garage foundation. It is smooth and and fun and picturesque next to the woods.
In the course of the past month my sister has formally adopted her 4 foster children, bringing their total count to 12! My parents and some aunts and an uncle traveled from out of state for the occasion which gave us a wonderful opportunity to visit. My dad stayed with us an extra several days and helped us get things repaired around our house. It was so fun. The adoption ceremony in the courtroom was beautiful and emotional and it made everything REAL! The temple ceremony the following day in the Kansas City temple was beautiful and emotional and it made everything ETERNAL!
We also enjoyed the peace and spiritual feast of a General Conference of our church this past month. I had been experiencing a lot of negativity and depressed thoughts and feelings for a couple of weeks prior to this semiannual event. General Conference was such a boost of spiritual uplift that I felt strengthened and peaceful and faithful again. Matt and I listen to a talk from conference each day to keep our faith high. It is a daily reminder to me that God's tender care for me and my family is sure, that we are watched over, and we will be guided and protected by His hands through our trials. I feel like I am being held in His hands and that we are sustained by Him because of the hundreds of prayers being offered on our behalf by our loving friends and family. We love you all.
Matt went back to the doctor because of the increasing pain and redness at the site. We thought it was developing an infection again. His doctor didn't think so because he really couldn't see anything clinically that indicated infection. He felt the pain might be normal from the healing process. I wasn't convinced. The doctor did start him on antibiotics again, however, because "it won't cause harm." So Matt took 2 more weeks of his double antibiotics (Flagyl and Levaquin).
By the way, how much antibiotics is too much antibiotics? We are warned of giving children too frequent antibiotics because they will develop a resistance. Is this not the case for Matt? My friend whose father passed away from cancer comments that doctors will give cancer patients any amount of medications they want because they are not thinking long-term. They are thinking of making the patient comfortable for the here and now. Her father was taking LOADS of painkillers. Another friend of ours is taking such strong pain medicine through a continuous pump to handle the pain from her cancer that she can't tolerate her treatment procedures done at the hospital without excruciating pain because the standard amount of pain meds they give to help with the procedure don't get anywhere near the amount that she needs to handle the pain. The point is, I wonder how many meds are appropriate in this instance. It is something I should ask the doctor.
We are now a week or two after finishing the most recent dose of antibiotics and he is doing alright. He seems to be in pain consistently but it is a 1 or 2 on a scale from 1 to 10. I worry when he crashes asleep at 9 at night because that is very unusual for him. I worry when he gets to sleep in but he still feels tired during the day. I worry when he tells Abby (after he has swatted her bottom), "No! Don't hit me there! It hurts!"
Is this level of pain and tiredness normal? Or do they indicate developing infection? We know now not to present to the doctor unless it is very clear that infection is occurring. I asked him at the last visit, "What if the infection does recur? What is the plan then?" (Matt is at the last stretch of school for the year. He is in the middle of testing and has about 4 or 5 weeks remaining. We want him well enough to finish the year.) The doctor's response was that if he presented with recurrent infection, he would put him back on antibiotics but for a longer term, a month instead of 2 weeks. I actually feel good about this because the antibiotics do work against the infection and we know that he will be able to finish the year without interruption.
He has his next set of scans scheduled for May 23rd when school will already be over for the year. We are planning a family vacation afterward so that we can celebrate clear scans! Positive thinking! This time, his oncologist has ordered a CT scan of the chest as well as a PET scan to check for metastasis anywhere in his body. We pray for clear scans!!!
The rest of us stay busy all day with home school. The kids are working so hard (and Momma too!) to get their work caught up, even if it means writing 2 English essays a day and an hour of math plus their other subjects. The computer is in use pretty much every minute of the day whether Ella is doing math on Khan Academy or Abby is writing an essay or Ella is doing her English. Just keeping track of everyone's schooling is a full-time job!
In addition to school at home, the kids are in a Drama Club with other homeschooling families. We are in an informal running club to get in shape for Matt's upcoming 5K fundraiser. Kian attends a physics class from a friend teaching her own kids the subject. We are busy with many great things.
I feel the need to get our house ready to sell by mid-May. I am researching to be sure there will be a house big enough for us to move into that is also within our price range! Did I mention that our house here in Missouri got flooded during the process of repairing from the fire?! I woke up after a night of pouring rain to slosh, slosh, slosh as I stepped through the living room! So now we are removing the carpet from the living room as well! Our home in Utah is under contract. That is good news! In our home here we now have repaired kitchen walls and ceilings now but are still waiting for the garage to get built. In the meantime, the kids thoroughly enjoy riding bikes and scooters on the new concrete poured onto the old garage foundation. It is smooth and and fun and picturesque next to the woods.
In the course of the past month my sister has formally adopted her 4 foster children, bringing their total count to 12! My parents and some aunts and an uncle traveled from out of state for the occasion which gave us a wonderful opportunity to visit. My dad stayed with us an extra several days and helped us get things repaired around our house. It was so fun. The adoption ceremony in the courtroom was beautiful and emotional and it made everything REAL! The temple ceremony the following day in the Kansas City temple was beautiful and emotional and it made everything ETERNAL!
We also enjoyed the peace and spiritual feast of a General Conference of our church this past month. I had been experiencing a lot of negativity and depressed thoughts and feelings for a couple of weeks prior to this semiannual event. General Conference was such a boost of spiritual uplift that I felt strengthened and peaceful and faithful again. Matt and I listen to a talk from conference each day to keep our faith high. It is a daily reminder to me that God's tender care for me and my family is sure, that we are watched over, and we will be guided and protected by His hands through our trials. I feel like I am being held in His hands and that we are sustained by Him because of the hundreds of prayers being offered on our behalf by our loving friends and family. We love you all.
Sunday, March 20, 2016
Is this what normal feels like? Because it's awesome!
Matt's hospitalization and infection really took its toll on me. Randi, his Mom, flew out from Utah to be with us and help out with the kids. That was a blessing because I didn't do any dishes that week or drive Kian to seminary. That was awesome!
Matt got better on the antibiotics. On Saturday he felt better enough to go out and about with the family. We drove to Hamilton which is the hometown of the Missouri Star Quilt Company. We took Randi into all of the shops and browsed the amazing fabrics. We ate lunch at Subway. We drove and stopped at stores we had always seen but never visited before. It was really fun. We looked at tiny home displays and cabins for sale. We even toured a friend's cabin-like house that was for sale out in the country. It felt so great to just get up and get ready for an outing like a normal family. To just go and do something for fun and not worry about health or cancer. It really felt great.
Matt was better enough to go back to work. He's been getting caught up there and even attended his parent-teacher conferences which was really important to him. The kids and I have buckled down and figured out what we need to do to get school done on time. I've bribed them with a camping trip this summer if they can get their required items on their list done. It has not been easy because it's so much more schoolwork each day than they are used to. We do school from 9 am till 4 or 5 pm but I've been grateful for the time to really focus so much attention on it since we got behind. In all of their spare time they ride bikes or scooters outside on the big concrete pad where the garage used to be.
The weather has been so fair this month that Maggie has been able to go outside and explore for the first time in her little life. Last year she was just a baby during the summer. Now she can walk and step in puddles and watch bugs and pick up stones. She loves it! Abby has already encountered the first tick of the year!
Every spare moment of my time is spent cleaning and decluttering our house. Ever since the fire I have felt the walls of this house closing in on me. I am frustrated with everything in it, even things I have always loved about the house. I feel a great big push from somewhere unexplainable to get this house ready to sell. I'm trying to get rid of half of all of the stuff we own. Maybe then we can fit here. Or maybe then we will sell it. We have had to do paperwork to get insurance $ to rebuild the garage and repair the kitchen. Hopefully construction on that will start SOON! We are also planning to sell our home in Utah. We still have to finish the "list" of all of the items that were burned in the garage to turn in to the insurance company. Between "the list" and taxes and decluttering and homeschool, I have been very busy!
Matt and I have been thoroughly enjoying this period of normalcy and health. Springtime is here and there is so much to do but with energy to do it, life feels grand. Everyone has commented on how great Matt looks. His principal is organizing a 5K fundraiser for him on April 30th and there have already been generous donations to go toward medical expenses and lost wages if he needs to take short-term disability. We feel so very blessed.
It is hard to ignore the posts from the Epithelioid Sarcoma Facebook group when fighters finally succumb to the stupid disease or when there is news of progression of their cancer. It is very hard for both of us to keep our thoughts positive when we wonder continuously on how long this period of health will last. But I try to recognize the blessing of today. The last couple of weeks of "normal" have felt so great. I treasure every day and every moment with him. We both will enjoy each day of health.
Today he has admitted he is feeling pain at the site and I definitely see redness that wasn't there before. It is very possible that an infection is recurring which we will keep a close eye on. We hope it will turn out to be nothing but we know it is very likely to turn into something which will require more meds, more surgery, more stress...
Matt got better on the antibiotics. On Saturday he felt better enough to go out and about with the family. We drove to Hamilton which is the hometown of the Missouri Star Quilt Company. We took Randi into all of the shops and browsed the amazing fabrics. We ate lunch at Subway. We drove and stopped at stores we had always seen but never visited before. It was really fun. We looked at tiny home displays and cabins for sale. We even toured a friend's cabin-like house that was for sale out in the country. It felt so great to just get up and get ready for an outing like a normal family. To just go and do something for fun and not worry about health or cancer. It really felt great.
Matt was better enough to go back to work. He's been getting caught up there and even attended his parent-teacher conferences which was really important to him. The kids and I have buckled down and figured out what we need to do to get school done on time. I've bribed them with a camping trip this summer if they can get their required items on their list done. It has not been easy because it's so much more schoolwork each day than they are used to. We do school from 9 am till 4 or 5 pm but I've been grateful for the time to really focus so much attention on it since we got behind. In all of their spare time they ride bikes or scooters outside on the big concrete pad where the garage used to be.
The weather has been so fair this month that Maggie has been able to go outside and explore for the first time in her little life. Last year she was just a baby during the summer. Now she can walk and step in puddles and watch bugs and pick up stones. She loves it! Abby has already encountered the first tick of the year!
Every spare moment of my time is spent cleaning and decluttering our house. Ever since the fire I have felt the walls of this house closing in on me. I am frustrated with everything in it, even things I have always loved about the house. I feel a great big push from somewhere unexplainable to get this house ready to sell. I'm trying to get rid of half of all of the stuff we own. Maybe then we can fit here. Or maybe then we will sell it. We have had to do paperwork to get insurance $ to rebuild the garage and repair the kitchen. Hopefully construction on that will start SOON! We are also planning to sell our home in Utah. We still have to finish the "list" of all of the items that were burned in the garage to turn in to the insurance company. Between "the list" and taxes and decluttering and homeschool, I have been very busy!
Matt and I have been thoroughly enjoying this period of normalcy and health. Springtime is here and there is so much to do but with energy to do it, life feels grand. Everyone has commented on how great Matt looks. His principal is organizing a 5K fundraiser for him on April 30th and there have already been generous donations to go toward medical expenses and lost wages if he needs to take short-term disability. We feel so very blessed.
It is hard to ignore the posts from the Epithelioid Sarcoma Facebook group when fighters finally succumb to the stupid disease or when there is news of progression of their cancer. It is very hard for both of us to keep our thoughts positive when we wonder continuously on how long this period of health will last. But I try to recognize the blessing of today. The last couple of weeks of "normal" have felt so great. I treasure every day and every moment with him. We both will enjoy each day of health.
Today he has admitted he is feeling pain at the site and I definitely see redness that wasn't there before. It is very possible that an infection is recurring which we will keep a close eye on. We hope it will turn out to be nothing but we know it is very likely to turn into something which will require more meds, more surgery, more stress...
Wednesday, March 2, 2016
A tired mommy at 2 am
It’s 2 am and I can’t sleep. I don’t know why. I’ve been
tired most of the day. I’ve been short-tempered and over-emotional. I need a
good night’s sleep. I need to catch up on the poor sleep I got over the past
week while Matt was in the hospital. He is home now. His infection improved
enough to be sent home without the I&D.
I guess I need to back up to fill in the details. He
developed an infection after his surgery, after he returned back to work, which
became nasty. A strong antibiotic for 10 days didn’t help. It got so red,
tender and swollen and drained such a stinky fluid that he ended up in the
hospital for 4 days for IV antibiotics.
“Do you know what I smell like?!” he asked one day after his
shower. “I smell like a sewer!” he blurted in disgust.
The doctor really thought he would need an I&D
(irrigation and debridement) to clean out the wound which would mean leaving
the wound open after cleaning it all out and then packing it twice a day for a
month or two as the skin healed back together on its own. But so far the
antibiotics are working and the procedure hasn’t been needed. He did get a
drain put in to help relieve the pressure inside the wound.
I asked the surgeon if the infection came about because of
the damage caused by radiation. “Absolutely,” he answered. I asked if the
damage would be permanent. I can’t remember his exact words but it was
something to the effect of, “There are certainly long-term side effects caused
by radiation. I can’t say the word ‘damage,’ but…” and then all I heard was
blah-blah-blah because the point of his schpeal was that radiation kills
healthy cells and sometimes the body doesn’t heal itself back into its prior healthy
state.
Radiation is un-cool. This we have learned.
What I want to do is crawl into my bed and cover myself with
blankets and not be interrupted for 12 straight hours. No, make that 24
straight hours. No baby that needs to nurse. No little boy that wakes up to
pee, then stumbles into my room and needs snuggles before being sent back to
his own bed and then wakes up at 7 am which feels to me like the middle of the
night.
I just want to cry and let all of the stress and emotions drain
out of me. I want to let all of the trauma experienced over the past few months
just go away. I want to let it all out. I want to just cry and cry and let it
all drain out of me until it is all gone.
I want to be calm. I want to not be scared of what dramatic
event is going to happen tomorrow. Will it be a feverish baby that won’t let me
put her down all day till my back is so sore it feels like it will break and I
am unable to accomplish any of the hundred chores that are piling up on my
to-do list?
Will my husband’s infection get better or worse? Will he
have to go back to the hospital? Will I be able to care for him and for my 6
kids?
Will I be able to mentor my children through our school year
or at least monitor their progress and keep the most basic of records?
Will our house burn down in a fire? (We had another accident
today with melting plastic on the wood stove which filled our house with
noxious fumes and smoke and required us evacuating for several minutes.
Seriously).
Will the car start? Will I ever be able to make decisions
again? Will my kids be safe as they ride their bikes in the road?
Will the cancer come back on the next scan? When will the
next scan be? Will we have 10 years with Daddy? Will we have 2?
Should we move? Should we add on to our house? Should we
combine households with my mom?
There are so many unknowns. That is what is so awful about
cancer. Two of our friends have had metastases in a short period of time from
their initial diagnosis. It is hard to stay hopeful when the reality is so
dreary.
My oldest daughter turns 12 tomorrow. She is so excited! I
am so excited for her! I am going to take her on a shopping and lunch trip. I
want to savor these experiences. I want to enjoy all of these moments. I can
see her growing up right before my eyes. The same goes for Maggie. She is
changing into a toddler. She is exploring in new ways each day. I want to just
enjoy each day I have-we have-with Matt and not take a day for granted. I want
to feel balanced physically-emotionally-mentally-spiritually. I want to be
happy through all of these trials. What I am feeling now, however, is fatigue
and depression and fear. I want to go to bed.
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