Tender Mercies and Random Acts of Kindness

Chapter 11 - Recognizing His Hand in our Lives

What better day than Valentine's Day to recount all the small yet thoughtful ways we have felt everyone's love for us? I will be adding to this chapter often as so many people have reached out and will continue to do so as we go throughout this journey.

             

"I ... will show unto you that the tender mercies of the Lord are over all those whom he hath chosen, because of their faith, to make them mighty even unto the power of deliverance." (1 Nephi 1:20, The Book of Mormon). This is my new favorite scripture. I read it the other day and it resonated with me like never before. Since this whole process started, we have been so aware of these "tender mercies" from up above. Some may call them coincidences, but I don't think there is such a thing as coincidences. There is One mightier than us all who knows us perfectly and directs our path through life, and when we can recognize His hand in our lives, it's pretty awesome!  I thought it was appropriate to keep track of these so I could look back on the hard days when I need to feel how blessed I really am. This list is not exhaustive, and I'm sure I'll forget some, but here goes. 

•  multiple priesthood blessings of comfort offered to each member of our family
• an official diagnosis that has answered so many questions of why he's been sick for so long (some may not agree that this a tender mercy, but for me, it was comforting)
• a caring doctor who followed up with us and was thorough with his explanations and told us it was fine to text him at 3:00 in the morning
• being able to be seen by an oncologist the day after the colonoscopy
• having the strength to tell our kids this hard news
• helpful information that has been shared with us by others of things that have worked for them or family members or friends. We're figuring out what we want to use in our case. 
• visiting with and getting questions answered from neighbors and friends who are going through the EXACT same thing as us!
• running into people at the hospital and clinics who can offer love, hugs, helpful advice and words of encouragement
• seeing a friend at the temple who I haven't seen in years. She was an angel in human form who was sent to me when I really needed her (she had no idea what was going on, but offered a big hug that was so helpful)
• seeing and sitting next to another friend at the temple and feeling of her love and support for our family
• Every time we go to the temple, we see someone we know and love. Yesterday I saw a former ward member who shared with me that her husband had stage 4 prostate cancer and just finished treatment and is doing great! So reassuring to hear that some progress can be made even with stage 4 cancer, despite the doctors’ “death sentence”
• a care package from Scott's office filled with all of his favorite things and uplifting quotes
• so many delicious meals delivered to our home to feed our family
• friends inviting me to walk with them and listen as I talk
• numerous heartfelt gifts delivered to our home, including: a handmade blanket, a bouquet of Dum Dum suckers with a note saying "Cancer is Dum", pizza and redbox gift cards so our family can enjoy pizza and movie nights, generous monetary donations, flowers, notes and cards with heartfelt good wishes
• a neighbor offering us an endless supply of alkaline water from their special filter. Apparently that helps with intestinal and gut issues. It has been so good to visit with them every time we go over to get some more. (We eventually bought our own).😊 
• having people visit us and offer words of encouragement and love, just what we needed to hear
• a friend paying for a cleaning lady to come to our home and give it a nice deep clean
• numerous people giving rides to our kids when we couldn't
• a care package delivered from church friends on an especially hard day. It was just what I needed! :)
• a surprise Valentine's day visit at work from one of my gorgeous young women, bringing with her a beautiful red rose
• so many encouraging calls, texts, social media messages and people following, and complimenting me on, this blog. Please keep reading! :)
• so many wonderful, long, loving hugs 
• so many people offering to help with ANYTHING that we need and I KNOW that they will! :)
• hundreds, if not thousands, of prayers🙏 offered in our family's behalf, which we have "felt"!  I didn't think it was possible to feel someone's prayers for you until this trial, but I know that is what's keeping us buoyed up.
  
  
   

Latest Update

Chapter 10 - One Month Anniversary

Did I read that right? Has it really been a month? YES! A month from yesterday is when we got the "sort of" diagnosis in the ER. I can't even explain all the things we have experienced in this past month. It's been the worst, yet best, month of our lives. We have learned more about each other, drawn closer as a couple and family, and felt so much overwhelming love and support form friends and family that at times I have to step back and just cry tears of gratitude, instead of heartbreak. We know people love and care about us, and we cannot express the joy we feel when they reach out in their own sweet ways. A future chapter will be dedicated to their random acts of kindness.

I haven't written in over a week and I think I am going through withdrawals! Does that mean I have discovered my new passion? :) I'm excited to write some more and fill y'all in on the latest updates.

I went on a four-day cruise with my siblings and Mom to celebrate her 70th birthday! We had so much fun reconnecting with each other. We enjoyed teasing each other, sharing meals together, soaking in the hot tub, singing our hearts out to karoake, bartering while shopping in Mexico, and just having all around good clean fun. I enjoyed practicing my Spanish there and we had the most amazing fish tacos ever! 😋. I love my family so much and it was so fun to get together and have some much needed stress relief.


We finished out the birthday week with going to church with our mother and getting a family picture after. She said it was the best birthday she had ever had! We love you Mom.

Scott wasn't there at church though, or on the cruise. His immune system is "compromised" so he shouldn't be around all of those germs. His absence was felt, but there were little things during the trip that reminded us of him. The toilet paper in the hotel bathroom was Scott brand. 

On the cruise ship, one of the dining room wait staff looked like him and one evening at dinner they were singing Happy Birthday to a man named Scott! The night before he had his second chemo treatment, we gathered in my room for a family prayer on his behalf and my brother offered the most beautiful prayer. He must like to make us cry cause we all were! I'm glad I could share this intimate moment with them.
While I was gone, my family was well fed by neighborhood friends and Scott enjoyed the time immensely with his brothers and the kids loved the time with their uncles, some of which they haven't seen in years. It was a healing time for all of us and even though I felt torn from being away from my family, I knew they were well taken care of.

Scott's second chemo was last Wednesday, February 6, 2019. He said he talked to the doctor briefly about the liver biopsy results, but they weren't complete so we'll discuss those next time. They told him about some genetic testing that can be done, which is very pricey, but financial assistance is available, so they had him fill out a form to see if he would qualify, with the income he would get if he were on long-term disability, which is substantially lower than his current salary. We found out yesterday that we qualify for 100% financial assistance. I have a feeling this will be one of many things we'll qualify for. It's weird having to depend on other people's money to support us. Since we've contributed to the "system" I guess it's just time to enjoy the fruits of our labors, but I still feel like a mooch.


Before his chemo treatment, they do some blood tests; I'm not sure what they test for, but one of the numbers that was really high had gone down significantly, which makes us hopeful that the chemo is working. I have noticed too that after his chemo treatments his cough is pretty much gone! :) It comes back during his "off" week. I really hope that it IS working and the lung lesions (20, not innumerable) will shrink or totally disappear. After three months, they will do another scan to see if they have, and possibly do radiation for the tumors in his liver and colon, or surgery. In the meantime we'll just keep plugging along. The oncologist did say that we should go on our Hawaii trip. He wants us to go. Good, cause we were going to go anyway no matter what he said. He'll skip a treatment that week.

Overall we are all doing amazingly well. We are hopeful for the future and look forward with an eye of faith that we will learn what we need to from this experience and come out better, stronger people.

1st Chemo treatment

Chapter 9 - Chemo

Wednesday, January 23, 2019

So here we go! Only 8 days after getting the official diagnosis from the oncologist, we are headed to Scott's first chemo treatment. This is still such a surreal experience and I feel like I'm having an out of body experience. I can only imagine what's going through my husband's head. I wonder if he'll share on the drive down there. I doubt it. He's not much of a talker. We leave early; we are the first appointment of the day. It is painfully silent on the drive down. When we're about halfway there, I can't take it anymore. "That's it; I've had it! It's too quiet! You need to talk to me." He chuckles, then asks me a bunch of questions to get the conversation going. We talk lightheartedly for the rest of the drive down.

We check in and the nurse shows us to the chemo room. It's a bunch of reclining chairs lined up on both sides of the room. Hmmm, looks like an assembly line. This sure is a rampant disease. Screw you, cancer! The nurse is really nice, of course, and starts the "education" about the chemo and side effects commences. Nausea, loss of appetite, weakened immune system, etc. Is this even worth it?How is this improving his quality of life? She is very good and explains everything and then the chemo starts. :( Scott wants to rest and listen to some tunes, so I go out in the waiting room and start this blog. I still have a million questions and hope that we can talk to the doctor before we leave. I go back in the room after a little while to check on him and the nurse hands me a "cruise refund" paper to fill out. The doctor's office will write a letter requesting a refund for Scott and they need the cruise information from me. 😢 Again, I feel conflicted. I don't want to go to be with him, but I also know that there are plenty of people in our support system who can take him to chemo and check in on him periodically and bring in meals, etc. I wish he could come with us. It's just too early in the treatment and he really wanted to get started ASAP. We're not missing our Hawaii trip this summer though. If he has to miss a chemo treatment for that, so be it. 

They told us to prepare for six hours on the first visit; we are done in four and a half. Three different drugs were infused through the port. The last drug will be infused over 46 hours. They send him home with a pump in a fanny pack and schedule him to come in and have his pump removed. The doctor does come in towards the end of the treatment and answers some questions. They'll discuss the final liver biopsy results at his next appointment in two weeks. I'll be gone on the cruise. :( I want to be there for that discussion. It'll be old news by the time I get back. I hope Scott takes good notes.
Scott is in good spirits when we head home. All we can do now is just wait and see how he reacts.

When we get home, I go grocery shopping. Our fridge is bare; I haven't gone in two weeks. I head to Costco to wander the aisles. I run into a friend there and tell her what's going on. It just surprises me how straight-faced I can be. I think I'm so sick of talking about it that it's like I can't be emotional about it. She shares some comforting words with me and gives me a hug. I spend way more money than I should at Costco, but I find a cute sweater there and two pairs of pants. I've needed to get some new clothes for a while, but never could find the time. I buy the outfits and don't feel the least bit guilty about it.

The Aftermath
Thursday - Sunday, January 24 - 27, 2019

I go to work on Thursday and so does Scott. By now, I'm sure my co-workers know and they'll say something. It's ok. I know I'll feel of their support too. It's better to have a sense of normalcy than sit at home and feel sorry for myself. My co-workers are very supportive; some mention it and some don't. I feel of their support for me. Scott had a good day at work and feels good. No nausea ... yet and his appetite is good.

On Friday, we go to get his pump removed. As we enter, he sees a former co-worker of his there with his wife. He asks what we're doing there and we break the news to him. His face shows disbelief, just like the face on every other person we tell. It's cause he's too young, huh? The same nurse who administered the chemo on Wednesday removes his pump. It's good to see a familiar face. She jokes with him about being an pro already. Everything goes well with the pump removal and we head home. I drop him off and then head off to our daughter's ballroom competition with her. Scott's too tired for this one. He wants to stay home and rest. I hope he can come to more of them in the future, but who knows. This really sucks!

The ballroom competition goes well. Our daughter and her partner make it to round three, the furthest they've ever gotten. When we get home, Scott is like a walking zombie. I have never seen him this tired. He has been trying to sleep all day, but with no luck. He's just kind of sat around all day and not had energy to do anything. No nausea though; I guess that's a blessing. We enjoy a quiet evening with our kids and he's finally able to fall asleep and get a decent night's rest. I wish I could say the same. I've had a pain in my chest since about two days into this process. Now it's starting to develop in to a couch. Great, now I'm getting a cold. Stay away from Scott! Or is it anxiety, or cancer that has spread to my lungs?! 🤣

Saturday morning my daughter and I are off bright and early. Who schedules a ballroom competition to start at 7:00 AM on a Saturday? They do fantastic, making it to the quarter final! I am proud of her and her hard work. I love watching my kids do what they love. And cheering them on loudly; I'm really good at that! Later that day, right before I  head to the gym, a neighbor stops by with a portable speaker that's hooked up to the microphone at church so Scott can still listen to church if he can't be there. We get it figured out. That was really nice of him. Scott is glad he can still "attend" church, in a sense. After we get it hooked up and figured out, I head to the gym and exercise for the first time in about a month. I run three miles on the treadmill and it feels amazing!

Sunday is surreal again. Half of the people know; half of them don't. Scott isn't there with us; we miss him. He's able to hear what's going on so I'm glad. I get to go to Young Women's after sacrament meeting and the girls lift my spirits by just being who they are. We have an amazing lesson by a ward member who teaches seminary, a church class offered to high school students, and they love what he teaches. It's nice to just be able to listen. He does a great job. When we get home, Scott mentions that his brothers are coming next week to watch the Super Bowl with him! :) Major score! Good job, brothers! Scott has two brothers who live close by and three that live out of state. They have all arranged to come into town to spend some quality time with their brother and our kids! My heart is happy knowing that he will have some awesome male bonding time with them, doing what he loves! I feel reassured that other adults will be here while I'm on the cruise, well, for at least part of the time. I hope they take lots of pictures!

Waiting for Chemo

Chapter 8 - Now It's starting to get Real!

Saturday, January 19, 2019

Today is a ballroom competition for our ten-year-old. I'm excited to have something to take our minds off all of this gunk that we're facing right now. I hope we can focus on him and not stupid cancer stuff!

My sister-in-law comes down to help us cheer on our son. It's good to see another family member and feel of her love and support. I'm glad she's there. Before the competition begins, Scott tells me that his co-worker, the one who lost her husband to this same cancer is there too. We go over and talk to her briefly. It's good to see her and I thank her for the information she gave us already and tell her I'll text her to set up an appointment to visit with her next week. She is very gracious as she offers to meet with me anytime.

The competition begins. I can tell Scott is exhausted. He looks really sick and like he just wants to go home and go to bed. His body is there but that's about it. I visit with my sister-in-law and she thinks the same thing. It's hard to have a conversation with him; I can tell he doesn't feel well.

We cheer loudly for our son. The louder the better at ballroom competitions! It is a great stress relief. Our son struts his stuff and charms the judges. It as so great to see him do this. He loves it and you can tell. His team wins a gold medal and the sportsmanship award! Great job team! I'm so glad we had this time to forget about cancer, even though it's always in the back of our minds.

Later that day, we're able to visit with my friend who lost her husband fourteen months earlier. It's a wonderful visit. She gives us words of wisdom that can only be given by someone who has experienced this firsthand. She asks us when he starts chemo, and we tell her hopefully next Wednesday. She tells us to do something fun with the kids on Monday and something fun just the two of us on Tuesday. Good advice. We will do that. I'm so glad to have her as a resource. She is a special, strong woman who I admire greatly. I will definitely be talking to her more as this journey progresses.

Sunday, January 20, 2019

This is the first day at church when "everyone" knows. I want to go to feel their support, but I don't want to at the same time. The support we have received and felt has been overwhelming and I'm so grateful, but sometimes I just want to be alone. It's annoying to feel so conflicted. I go to church and we enjoy wonderful talks, yet again. The information shared in the last talk is comforting to me. When sacrament meeting ends, we get up to leave for the next class. We sit close to the front of the chapel and as we leave, someone in just about every row behind us gives us a hug. I appreciate all of them. I can feel their love and support for our family. The hugs from the Young Women are the best!
Sunday School goes ok, but of course our minds are on other things, making it hard to focus on the lesson. I sit next to a dear friend and am grateful to feel of her love. The Sunday School lesson has about 15 minutes left when I have a coughing attack and have to excuse myself to go out into the hall and get a drink. I stay out there the rest of the time; it's embarrassing to walk in in the middle of the lesson. A friend comes out about five minutes later and we visit for the remainder of the time. I appreciate it and enjoy the time we have to share together.

That night we have a family dinner with my siblings and mother. I invited them over to give them all an update about the situation. With all the texts I've been sending this week, I can't keep track of who knows what. I want everyone to be on the same page, but more importantly, I need to have them there with me to feel of their love and support. We eat dinner and then excuse the younger kids to go downstairs to play. The adults and some teenagers stay upstairs and we tell them the whole story. My brother sheds the most tears. It is heartwarming to me. He has always been a sensitive soul. I'm glad we could share this sacred experience together. I am looking forward to spending time with them in a few weeks on the cruise to celebrate our mother's 70th birthday. Scott can't go anymore. We have to apply for a refund, we tell them. We don't know how his body will react to his chemo and his immune system will be down. It's not a good idea for him to be around that many people and germs. I feel conflicted again going without him, but know that he will enjoy the time with our kids. They need some precious time with Dad too. Despite the tears, there is a peaceful calm that permeates the room as we discuss this life change with my family. I love them dearly.

Monday, January 21, 2019

It is Martin Luther King, Jr. Day and the kids don't have school. My brother-in-law offers to take the kids sledding with his kids. They are excited to enjoy time with cousins. While they are gone, I visit with his wife, who just had a baby. I haven't had the chance to visit with her since he's been born and am looking forward to newborn snuggles. We enjoy a pleasant visit on the couch as my newborn nephew sleeps soundly in my arms. I'm sure I will be visiting her often to soak up time with her newborn. It is good therapy. We are so grateful to Scott's brother for taking time to have fun with the kids. When they get back, we have hot chocolate and the kids play downstairs while Scott and his brother visit for a while. It is another special time.

That evening we are able to visit with my stage 4 cancer friend and her husband. They tell us about their healing trip to Hawaii and their experience so far; her treatment plan, how she's felt, etc. Again, information and empathy that only someone who is going through this same experience can offer. Her husband and I decide that we will join a kickboxing class to get out our aggression! We enjoy our visit and know that we have another great resource to turn to when we need it.

Tuesday, January 22, 2019

This is the day before Scott starts chemo. Everything changes starting tomorrow! The kids go back to school and Scott goes back to work. I am alone again! I keep myself busy to avoid another breakdown.

I signed up a while ago to work a few hours today. I have to tell my boss today. I'm dreading it, but know that it needs to be done. I go to work and the first hour goes by fine. Then I go to my boss's office. I want to catch her before she leaves for her lunch break. She invites me into her office and I request some tissue. She grabs her box and I take some and then just start gushing! She lets me gush and I am grateful for it. After I'm done, she reassures me that this is the last place I need to worry about. My co-workers will cover for me anytime I'm not able to come in. I know that they will. It really is the best place to work ever! I ask if it's okay if I give her a hug and she tells me of course it is. We embrace and share some tears together. Then I finish my shift as if nothing happened.
Bi-polar, I tell ya! I'm glad I was able to get that over with.

After my shift, I go to Scott's office to meet with his co-worker. She has graciously agreed to meet with me today. She shows me how to set up my blog and I am excited to get it started. As I listen to her story and her experience, I can't help but think how similar to it is to ours. She lets me know of so many helpful resources that we can use during this process. I am so glad that I was able to meet with her, but ... It. Was. Hard. Her husband was younger than Scott and only lasted 16 months! I know everyone's experience is different, but hers hits closest to home. I feel like I have gained an eternal friend through sharing with her. Another tender mercy.

I texted the GI doc earlier in the week. I want to meet with him so I can look at these "innumerable" lung lesions that supposedly are all over Scott's lungs. We have arranged a time to meet and look at the CT scan for later that afternoon. I anxiously drive to the hospital after I drop my daughter off at work. Scott doesn't want to come with me. I only have to wait a few minutes to meet with the doctor. He brings me to the back room and pulls up Scott's film. He explains what the lesions will look like and we review each frame. I counted between 20-30. That's not innumerable! I think. Why would they say there are innumerable lesions when there are clearly enough to count? I ask the doctor that and he says that they probably stop counting after a while. He may have missed some, since he's not a radiologist. Still, there are not innumerable lesions. That seems rather negligent to me. He asks me about chemo and I tell him Scott is starting tomorrow. He offers me more sympathy and advice on how to navigate through these troubling waters that are approaching. I thank him for taking the time to meet with me and go on my merry way.

Scott and I enjoy some time together that night, just like my friend encouraged us to do. Today just happens to be the day that Scott proposed 20 years ago! Another coincidence? I think not! We go see a movie; he's seen it before, I haven't. I fall asleep through it, as per my usual and on the way home he answers my questions about the parts I slept through. We go to bed with chemo in the morning on our minds. :(

Port Day

Chapter 7 - The End of Hell Week

Friday, January 18, 2019

Today is the day Scott gets a port in his chest. This is where the nurses can do blood draws and infuse the chemo directly into his veins. Since Scott hates needles, this is a blessing, so he doesn't have to get poked every time. The doctor says he'll need this port in his chest the rest of his life. Yah, right! We'll show them.

We get to the hospital early, hoping to get the liver biopsy done today also. Originally it was scheduled for next Tuesday, but the nurse called Scott last night saying they could probably do both that day. No need to prolong the inevitable. After the check in process, the doctor comes in and says that he can do both that day. Hallelujah!

As we wait for the surgery to begin, we see a familiar face. One of the men who came to give Scott a blessing on Sunday works as a radiology tech and he just happens to be working today at this hospital. Coincidence, I think not! He comes in and talks to us and offers words of comfort, as well as a big hug for Scott. I know that helps Scott calm down. Thank you, Heavenly Father, for placing yet another angel in the path of this journey.

He finally gets wheeled back for surgery. I take this time to answer some texts and call my sister. She has wanted an update, but I haven't had the chance to call her. As soon as she answers, the tears gush again. I'm so used to crying at the drop of a hat now; it's my new normal. She allows me the time to vent and cry and explain everything. Then she shares some sacred insight and guidance that I will be forever grateful for. How I love her and her fighting spirit, her positive attitude and her ability to pull me up when I am down.

Scott gets back from the surgery; everything went well. They're going to let him rest for at least an hour before the liver biopsy. I move my chair closer to his bed and we hold hands as we both talk and rest. After more than an hour, they bring him back for the biopsy. I go grab some lunch, and get him some too. This has been another fasting day for him to prep for surgery, and he is famished. He's back about ten minutes after I get back and he enjoys his lunch and we are ready to go. Before we leave, he gets up to use the bathroom and when he passes the room next to his, he sees a friend from the scouting program that our boys participate in. This friend has been a leader at their scout camp and my boys really look up to him. They visit for a few minutes. I can hear them talking and am trying to place the voice. I peek my head in and realize who it is. He shares his story about how he had kidney cancer and had to undergo chemotherapy for a while. Before we leave, he gives Scott a big hug and pulls me aside while Scott is in the bathroom and offers to "come sit with him on the hard days, because I've been through it and know how hard it is." I thank him and tell him I will call him when we need him. Another tender mercy from up above. We go home to begin our weekend with the kids.