Updates and Events

Chapter 14 - Taking Care of the Little Things ... And Some Big Things Too

Ok, I've waited way too long to post all of this, so I hope my memory holds out. Here are the latest updates:

Monday, March 11, 2019 - My colonoscopy day
My colonoscopy is scheduled for 7:00 AM. It's been two months since our long visit to the ER. Coincidence? No. I need someone to stay there the whole time, up to four hours, since I'll be sedated, and that person will need to drive me home after. I tell Scott that our 18-year-old son is taking me. He can miss a day of school. Besides, Scott's immune system is compromised and hospitals aren't as clean as they claim to be, and I'm getting my procedure done in the same building where his was done. Different doctor though; if I had the same one that would be awkward. I don't want him to get PTSD going back there.
"I didn't even think of any of that," he says, "but that makes sense."
"I did, and you're welcome," I laughingly reply.
I'm nervous for the day. What if they find something in me? I can't handle another bad diagnosis. The medical staff is all very nice. They wheel me back, get me prepped. The nurse has the same name as our eldest son, who is there with me. It didn't even hurt when he poked me for the IV. I compliment him on his skills. "Thank you, I have been doing this a while." :) The doctor comes back to meet me and we talk for a while. The question I'm anticipating of course comes up, of why are you having this procedure done at your age? "You're rather young to have this procedure. Most 29-year-olds don't have one of these done." Awww, what a sweet doctor. I explain to him why and he says "Oh I'm so sorry," so many times that I tell him he needs to stop or he'll make me cry. He is a very kind man and offers so much reassurance.
After a few more minutes of waiting, they wheel me back to the anesthetic room and explain everything again. I was just here two months ago, but patiently listen again, cause this time I'm the patient, not the supportive spouse. The next thing I remember I'm awake in my old hospital room and my son is there. The nurse comes in and asks how I'm doing. Just as I'm about to ask him if that was the stuff Michael Jackson had, he tells me that it was. "I can see why he liked it so much! I was totally out! That's the best sleep I've had in months, and it was only 20 minutes."
The doctor comes in and shows me pictures of my wonderfully healthy, disease-free colon! Not even one polyp! I won't need another colonoscopy for ten years! Wahoo! One less stress to deal with. My son and I leave in good spirits and go out to breakfast at Denny's. We order way too much food and bring leftovers home.

Tuesday, March 12, 2019
I go to my first counseling appointment. I cry almost the whole time, but it feels good to get it all out. I'm glad I decided to start this. I've been needing and wanting to for years. A neutral sounding board and advice-giver is always nice to help you feel more normal. :)
That night I have dinner with a friend who I haven't seen for a while. She's a single mom and it's fun to catch up and share life's joys and sorrows together. We'll have to do it again sometime.

Wednesday, March 13, 2019
That morning the weather was terrible! A blizzard in the middle of March! Really? Only one more week until spring! You couldn't tell that day! I have to go meet with my junior high age son's counselor. It's time to register for 9th grade! Ahhh, high school?! I don't want to go because the roads are so bad, but I don't want to reschedule either. It's fun spending time with him as he chooses some classes that he's interested in. We'll wait to see which ones he gets. I still can't convince him to take ballroom. He's my only kid who wants nothing to do with it. 😆 It's all right. He picked some fun classes, mostly computer ones, and PE, since that's what he's into.
I cancel a date with my mom and a friend because of the weather. My friend calls me at the time we had scheduled to get together and we have a really nice, long talk. I promise to come for a visit when the weather is nicer; hopefully spring will decide to come when it's supposed to this year.
My daughter has her first counseling appointment later that day. She has a fun time getting to know her counselor and is glad to have someone else to talk to. Since I have some time before I go get my boys from school, I go to the office across the street. I've been waiting to hear back from them about a certain counselor for my boys. They have been on a waiting list to see him and when I called the week prior, the receptionist told me that they were next on the list and I should hear from them soon. I figure it would be better if I talk to them in person since I'm there. It's always better to talk face to face than over the phone. I go in and explain our situation to another receptionist (the one I originally talked to wasn't there that day) and tell her my boy's names. She pulls up the info on the counselor and finds out that he has two back to back appointments the following week. "I think I'm gonna cry," she says. "I've worked here for two years, I have never seen that happen! Back to back appointments, for the same family! That's a miracle!" Another tender mercy, I think. I tell her I'm so glad someone up above is looking out for us. :) She then shares that her first husband died of a brain tumor when he was just 33 and she was left with three little kids. She reassures me that I will be OK. Another angel from heaven! I ask if I can give her a hug before I leave, and of course she accepts. I never would have met this woman if it hadn't been for our situation. Thank you, Heavenly Father. He really does know us. :)
Scott starts ozone therapy today. He gets to sit in a big machine and have it pump ozone into his body. It's supposed to help his body release toxins. We met the owner last week on our way to Scott's chemo treatment. We had a good visit with him and are very grateful to the people who introduced us to him.
That night, I went to a church activity with other sisters in my ward. Every so often, the women's organization of the church, called the Relief Society, has an mid-week activity. It's a good opportunity to come together and feel of the sisterhood that we share as a part of this organization. I honestly didn't want to go. I didn't feel like I had a lot in common with these women and I enjoy my comfort zone of being with the young women. And I had so many other things happening in the evening that week, that it was just one more thing. I convinced myself that I would stay home and enjoy time with my family. After hearing a talk from one of these incredible sisters last Sunday in church, I changed my mind. I needed to be there to feel of their love and friendship. It knew it would really help me. I'm so glad that I went. I got to know some sisters better and meet new ones. I felt an incredible amount of love and like I truly belonged. It was so needed.

Thursday, March 14, 2019
It's my baby's birthday today. He turned 8 years old. How does the time go so fast?
He sure enjoyed his LEGOs.  He keeps asking me to take him to the store to "get his Bible." 😆 In our family we have a tradition that when our children turn eight, we get them a full set of scriptures, in preparation for their baptism. In our church, we believe that all children ages 8 and older know the difference between right and wrong and are now accountable to Heavenly Father for their actions. They can make the decision to be baptized and make sacred covenants with our Heavenly Father when they are eight. He is very excited for that day and to have his own scriptures. :) I tell him I'll take him later that week to get them.
Since his birthday is on PI day, we have also have a tradition (just for his birthday) that we have pie instead of cake. He picked out a pie earlier that week at the store and he is excited to eat it later that day.
That night for our youth activity, combined with the boys, we had a lip sync battle. Yay! I'm super excited for this one! I'm kind of a lip sync freak. It's my thing! The girls think I'm so weird for getting so excited about it, but it's a great way to relieve stress and just let loose. I had pre-arranged with a couple of the other leaders to do a song from the early 90's. I got the idea from my sister last year when we went on a road trip to visit our Dad for his 70th birthday. She put a play list together with 80's/90's songs and when this song started playing she said, "Wouldn't this be the greatest song to lip sync for your young women?!" Yah that's a way cool idea. Just have to wait for the right opportunity. So tonight was the night! Complete with costumes, including fedoras, vests, and pegged pants, we lip synced our hearts out to "Hold On" by Wilson Phillips! (No pictures of that one, sorry!) It was awesome and I had so much fun! We won second place! But more importantly, I hoped that the girls remembered the message that the song portrayed. It's a great message. I love them so much and hope they remember to always hold on. That song means a lot more to me now. Maybe that will be my new theme song.
We enjoyed delicious chocolate cream pie when I got home. It was a really fun day.

Friday, March 15, 2019
Because of the wild weather, a neighbor's fence had blown over and a neighborhood service project was organized to help lift it back up. Scott decided to go help and he took one of our sons. They were practically done by the time he got there. The ward members were happy to see him and he was glad to be of service. I think people were glad to see him, since he's been MIA for the last two months to avoid crowds. But guess what, he would love home visits! As long as you're not sick, you're welcome to visit with him anytime. That would actually be really nice. I'm getting kind of tired being the messenger girl. Just ask him how he's doing!

Saturday, March 16, 2019
Our youngest had a birthday party today. He enjoyed spending time with his friends doing boy things like playing outdoor games and sports, eating pizza and watching a movie. :) Super chill party! I'm all for that! :)

Sunday, March 17, 2019
It's St. Patty's Day! Weird to have it on a Sunday, but my kids all find something green to wear for church and they all look great. We have a good day at church and I have a fuul day of meetings, before and after church. I'm gone from 9:00 AM until 4:00 PM. That was a long day! When I get home, I'm too tired to make our traditional St. Patty's day meal of green pancakes or waffles. It's okay. Maybe next year. My kids didn't ask for it, so we were fine.

Monday, March 18, 2019
I go to another counseling appointment. Not as much crying this time. My daughter registers for her junior year of classes and gets all the ones she wants. Yay! She's excited to not be bottom of the totem pole as a sophomore and get last choice and risk the chance of not getting into the class. I take my two boys to the counselor that they've been on the waiting list for. I visit with him for a little bit in between the two sessions to give him the rundown. My two boys have ADHD, and that is what he specializes in, so it is so comforting to me to know that they will get such good help. Boy, he really knows his stuff, I think as I talk with him. I'm so glad we were led to him.

Tuesday, March 19, 2019
Today I take my 10-year-old to a children's hospital to see a specialist. He has had some bladder issues for years that we are trying to nip in the bud. He has an ultrasound scheduled. I explain to him what that is and how I had one for all my babies when they were inside me and how Dad had one and that's how they found the cancer. He seems excited to be able to see inside his body. I'm nervous for the procedure. Please, don't let it be bladder cancer! I desperately hope and pray as we have the procedure done. It goes off without a hitch and his bladder looks great. Hallelujah! We go talk to the doctor and come up with more strategies on how to help him with his issues. At least his bladder is healthy, and we can cross that off the list and move on to Plan B.
As I'm driving him back to school, I get a phone call from the vice principal about another son who is currently in his office. He has done a stupid, teenage thing, and is dealing with the consequences through the school. He needs me to come in and talk to both of them about it. I tell him I'm on my way and I call my husband and ask him to meet me there.
We get to the school and my younger son goes off to class and I make my way back to the vice principal's office. Scott beat me there and they have started talking. I sit in the chair behind them. The vice principal explains the situation and he and my husband start discussing consequences with our son. Scott talks so calmly to our son and explains about how he reacts to this situation will help define what kind of man he will become. I start to cry, partly because of exhaustion of the events of the morning, but mostly because I just think how wise Scott is. The world needs more good men like this! He can't die! I'm so impressed how he uses this situation to teach our son correct principles and allows him to govern himself. He is a really good parent who is so calm. I use emotion to parent and that usually doesn't go over very well. :( We take our son home and we can tell he's very remorseful and wants to repair the damage he's done. We talk to him about repentance and it's another good teaching moment.
That night, we have a meeting with an estate planner. We've wanted to do this for years, but never got around to it. It's amazing how a life-altering situation forces you to be vigilant. We have a good discussion with him and come up with an action plan and he gives us some assignments to complete before the next time we see him. We have to decide who gets our kids should we both pass away before they're raised. It's not something you want to think about, but needs to be done. We'll have peace of mind once it's all finalized. Another thing to check off the to do list.

Chemo #5 is tomorrow.

Chemo #4

Chapter 13 - How Can you Stay so Strong?

So many people have commented to me since this journey began about my strength. They can't believe I am so strong through all of this. Ha, they haven't seen me in my weak moments, thank goodness! I think. But then I start to think that, yah, I, and my family are doing remarkably well, despite this difficult trial. So why is that? I ask myself. Time for self-evaluation.

1) The number one reason I have the strength to endure this is because of my Heavenly Father and His Son, Jesus Christ. I KNOW they are helping me, guiding me, strengthening me and sustaining me, as well as my husband and children. There is such a power in prayer that I always kind of knew, but didn't really experience until this happened. So many people have been praying for us, reaching out, serving us and just being all sorts of kind to our family, not because they feel sorry for us, but because they truly love and care about us. I can truly feel my Savior's love through them and  these experiences are little pieces of heaven on earth.

2) Ok, now I can't see what I'm typing because I cried as I typed that last paragraph. 😭 Another thing that helps a TON is a podcast that I listen to called Bold New Mom, and is hosted by a woman named Jody Moore, who is a life coach. This podcast was recommended to me about a year ago from a Bunco friend. I started listening about six months ago and it has been life changing. I try to listen to one or two episodes a week, more if I can squeeze them in. I'd like to share some things she said on the last podcast I listened to as my husband lay in a hyperbaric chamber two nights before his fourth chemo treatment. Being led to this kind friend who allows him to use it is another tender mercy that we were granted. Anyhow, I digress. These are some things that Jody shared in the podcast that stood out and spoke to me. During this podcast she was answering questions emailed from listeners and many of the questions had to do with hard things listeners were facing in their lives and how they could cope. This is what she had to say in response to their questions.

• "Your life is not hard unless you choose to believe it is hard .... Why would you want to doubt your own capacity for joy?" 
• If you're feeling overwhelmed, it's because of a lack of belief in yourself and in your ability to create what you want in your life, for yourself and for the people around you
• You feel overwhelmed because you're not taking care of you; you're treating yourself like a punching bag and allowing others to do the same (I'd rather use my real punching bag, thank you very much! Although I haven't used it yet, because it's outside on my deck and it won't stop snowing long enough for me to go out there and enjoy it without slipping on the ice!) 😣
• You are not missing out on any experience you are supposed to have; all of this is part of your perfect journey and disappointment is just a feeling.

Wow! Do you have warm fuzzies all over? Are you feeling empowered? That's just a tidbit of her amazing insights that keep me going through this difficult experience. You should check out her podcast - Bold New Mom. :)

3) I wear this necklace every day to remind me where my strength comes from.

• The Wonder Woman signal is a reminder of the BEST super hero there is. I honestly didn't know much about her until the movie came out in 2017. Ever since then, I've kind of become obsessed. That movie and her character spoke to me. I am inspired when women, real or imagined, are empowered to do great things. Even though her character is fictional, it's what she stands for that speaks to me. (Spoiler alert: IF YOU HAVEN'T SEEN THIS MOVIE, YOU PROBABLY SHOULDN'T READ THIS PART UNTIL YOU DO, UNLESS YOU DON'T WANT TO OR DON'T CARE ABOUT SPOILERS!) Toward the end of the movie, when she is having the epic battle with her brother Aries and is going through emotional turmoil because she just lost the love of her life, it seems like she will lose the battle, until she says, "I believe in love!" Then she's able to break through the "chains" that bind her down and defeats her brother and saves the world. Pretty awesome! Anyways, that's why she's the greatest super hero, plus she's a goddess, too, which is pretty cool. She has compassion and fights for love.What better cause is there than that? 
• The second item on the necklace, the sword, also has to do with Wonder Woman. It's her sword, which she uses to fight for justice. It reminds me of our fight that we're fighting right now.
• The third item on the necklace is my favorite. It is a medallion that can be earned by Young Women, their mothers and their leaders, in the Church of Jesus Christ of Latter-day Saints, through a goal setting and personal growth process called Personal Progress. It requires hours of hard work as girls and women set goals and work toward achieving them. These goals include reading and studying many scripture verses, writing their thoughts and feelings in their personal journal, and completing a total of eight 10-hour projects to enhance or discover their talents in a variety of different areas. Needless to say, it is quite the accomplishment when this award is earned and every time I see this medallion I'm reminded of the awesome young women that I have the opportunity to be with. I love them so much. 

So, when you ask, "How can you stay so strong?", now you know the answer, well, three reasons why, anyway.

Updates on my husband: Isn't that the only reason people read this blog anyway? 😆

Scott went in for his fourth chemo treatment on Wednesday. We met with the doctor before the appointment, and we had a gazillion questions again. Primarily, we wanted to talk to him about Scott's inability to digest food. Is that a medical condition, is it chemo related, or did he catch a bug? The answer is there's no way to really know, but yes there is a medical condition called gastroparesis in which a person's stomach doesn't digest food properly, if at all. He prescribed a medication that he can take should it happen again.
We also requested for his vitamin B and D levels to be checked because we have read that those levels can directly affect your body's ability to fight cancer. 
https://thetruthaboutcancer.com/treating-cancer-naturally/
The doctor remarked that Scott had lost a lot of weight, (15 pounds since treatment started). I replied that he is actually at a healthy weight now and he was less "puffy." Yes he has lost weight, but I don't think he looks unhealthy. We have changed the way we eat and when you do that so drastically you are going to lose weight quickly. The doctor disagreed with what I said and seemed like he was concerned at his rapid weight loss and encouraged him to maintain a healthy weight, yet he didn't say what that weight should be, or what he should do to maintain that weight. I chuckled in my mind because he is a rather rotund fellow himself. We'll keep monitoring his weight loss and now that he can keep food down (knock on wood), I think his weight loss won't be as rapid. I think he looks fine.
We asked him about when his next scan would be. He said after treatment #6, which is next month! :) We set up a tentative date for the scan, for my piece of mind. Scott asked the doctor questions about alternative treatments (oxygen therapy and ozone therapy) and if he knew if they would counteract negatively with the chemo. He didn't know the answer and said that there was no data to support it either way, which is exactly what the people who have tried these alternative treatments (and are now cancer free)😁 said he would say. Medical doctors only know their field of study (cancer and prescriptions) and so there is no data backed by the medical community to support these findings. Hopefully the two sides of medicine, prescriptions and natural remedies, can come together to find a cure for these maladies that we all suffer from. Until then, we'll have to keep paying out of pocket for "alternative" solutions that the insurance companies won't cover. So dumb, it's like we can't take charge of our own health!

Okay, enough of my soapbox! Back to chemo treatment #4. The nurses faces are all starting to be familiar now. Scott is still the youngest one there; there was one guy there maybe in his fifties, but everyone else is retirement age. The nurses are super cool. We had awesome conversations with them about pretty much everything under the sun. They are our age - we talked about kids, church, music that we liked in high school that is now considered "oldies." One nurse commented how the newer and younger nurses there didn't even know who certain 80s artist were! They'd never heard of them! How sad! I pulled out my 80s playlist and we enjoyed listening to a few great songs. Since the chemo room wasn't full, I got to sit on one of the comfy chemo chairs instead of the uncomfortable "visitor" chairs placed by each chemo chair. One nurse even jokingly offered me some leftover chemo since I was sitting there. Boy, they sure know how to take the edge off and help everyone feel comfortable. Scott finished his chemo around 3:00 and then we went to our daughter's ballroom competition for the rest of the night. He was so glad to finally be able to go to one since he hasn't been able to attend this whole season. He wore his mask for most of the time in order to not catch any germs. It was great to spend time with him, supporting our daughter and watching the beautiful dancing. We stayed until the very end and had a great time!

The rest of this weekend has been good; he hasn't been nauseous or sick (YAY!), just a little tired. I have been at the ballroom competition every day since Wednesday. It's the national competition; the last one of the season. Our daughter competed with her team, and individually. Our ten-year-old son also competed with his team and individually. His team won first place, again! He was so excited! :) It was great to be there, but it's so nice to be home and just chill with my family.

Tomorrow I get my colonoscopy (yuck!), but I'm glad I'm getting it done. And guess what, my insurance will pay for it! :) I also finally made an appointment with a therapist, as well as one for our daughter. She has been wanting to talk to someone for a while and has pushed me to get that done. I'm hoping we enjoy this experience and find a positive outlet to vent all of our feelings.

Well, those are the latest updates. I'm really going to try to write a little bit every day because this post has taken a LONG time to write and it's hard to remember everything. Until next time. :)

Chemo treatment #3

Chapter 12 - A Long, Cold Winter

(Oh my gosh! I haven't posted in a long time, and so many people have been asking for updates, so here's the latest news! Thanks for your concern and support. I will try to be better about posting regularly.)
February 22
"What a long cold winter
Will it ever be spring
Will the snow stop falling
Will the robins sing?"

Those are words to a musical adaptation to the classic, beloved story Little Women, called Jo. When I was in 7th grade, I played the part of the bratty, spoiled youngest sister, Amy, and I sang that song. It was sooooo out of my comfort zone! I was a painfully shy youth, and always mad; I don't know about what. I tried out for the play because it was a very small school and practically everyone who tried out got a part, all two of my friends were trying out also, and my mom's friend from college was directing the play, so I was a shoe-in, right? I couldn't fail. It was type casting, really; as I mentioned earlier I was a bratty, mad youth. (Not sure if I've changed much, except for the youth part.) 🤣 I cherish the experience of that musical. I'm grateful for the opportunity I had to be stretched and learn new things and grow. I remember vividly practicing hard for my solo singing part. A very loving, patient teacher, who I still remember with admiration today, helped me reach a high F; which was quite a stretch for my alto voice. Why am I mentioning this event that happened over thirty years ago? Because I'm sick of winter! While the thin blanket of snow that covers the landscape is beautiful to look at, I wish it would just be over already. This time of year, when there's only about a month left of winter (hopefully), I get down. The holidays are over, the kids are back in full swing at school. I enjoy walking and running outside; but it's too cold and icy to do that now. The kids bring home sick bugs from school; it's that time of year. I wish school would just be cancelled for January and February so everyone could keep their germs to themselves. My two youngest have missed a week of school! They finally went back today. Keeping them quarantined from Dad for a week was not fun, nor effective. It didn't work! How am I supposed to keep sick kids away from their immune-compromised Dad? I'm counting down the days until March 20th!

Scott went in Wednesday for chemo treatment #3. They gave him an additional drug this time, Avastin. The doctor didn't want to give it to him until his port scar completely healed, because it's a blood thinner and the blood doesn't clot. His treatment this time took 5 hours, instead of 4, to get the last drug in. For those wondering what drugs his chemo "cocktail" is, besides the Avastin, he is also receiving Oxaliplatin, Leucovorin and my favorite, Fluorouracil, more affectionately known by it's abbreviated version, 5-FU! Haha! For those interested in that scientific medical jargon, you can go to www.chemocare.com for more info on all of these drugs. Needless to say, this is the treatment where he's really starting to feel it! Yesterday he was puking and he hasn't eaten much. He's hardly slept at all. Is the puking because of the chemo or because our two youngest boys were sick with flu-like symptoms last week, or both? He goes in today to have his tube removed from his port and we'll ask the nurses then. (Update: they have no idea, surprise, surprise!)🙄 Other side effects of these medications are cold sensitivity in his fingertips and toes, aka neuropathy. That's another reason why we want this long, cold winter to be over with.

On the recommendation of a friend, I bought a book called My Parent Has Cancer and it Really Sucks! It was written for teens by a father and daughter team who were caregivers for their wife and mother. It's very appropriately titled and I'm enjoying reading it. I will give it to my kids to read when I'm finished. There's a phrase in there that describes perfectly my husband's state of fatigue after chemo. "Chemotherapy-related fatigue is like ten times tired." There are certain levels of tiredness. There's the tired you feel after playing a game of sports, the tired you feel if you have to get up early and you stayed up too late, or the sleep deprivation level of tired when your sleep is interrupted because of a newborn in the house, or staying up to care for a sick child. Each of those levels of "tiredness" are difficult, but NONE OF THEM compare to chemo tired. Scott described it as "I'm so tired, I can't sleep. I don't have energy to do anything. I lay there and can't even read, watch TV, look on my computer, etc. My legs feel like Jell-O." This is going to be a sucky weekend!

Saturday, February 23
My husband has pretty much been up all night puking or in pain. Nothing he takes helps him feel any better. He curled up in a fetal position last night and just had to lay there until it felt better. I went to bed with him laying on the floor like that. I wish there was something I could do to help. I went to go use the bathroom last night and he was on the bathroom floor unable to move. He needed my help to get to bed. He hadn't been there very long, thank goodness, but he said it took all of his strength to crawl into the bathroom from the front room (only about 20 feet) to puke in the toilet. Really?! I wonder if this is worth it! I hate seeing him in this much pain. 😢
Our daughter has a ballroom competition all day today. I am so excited to go see her compete. She loves it and is getting really good. I'm glad to be able to leave home and drown out the cancer drama for a while. My sister-in-law and niece meet me there and we have so much fun cheering her on! She and her partner took second place (in the state) in the swing! Way to go, girl! It's so fun to scream our guts out for her. She wears her medal with pride for the rest of the competition, except for when she's dancing and she tells me later that she dedicated her medal to her dad because he couldn't be there. (We really hope he's at the next one.) She also competes in the samba, and she and her partner make it to the semifinals; they've never gotten that far yet. They are hoping for the finals at the next competition in early March. I'm so proud of her hard work. She will go far with a positive attitude and strong work ethic. I love to see her excel at what she loves!

Future plans
Besides chemo treatments every two weeks and scans every 3 months to see if any cancer cells have shrunk, we are also planning to meet with a genetic counselor in March to determine if the cancer is genetic or environmental. Both Scott and I are being tested. Even if our insurance won't cover it for me, it's not too expensive and I would like to know if I have a cancer gene somewhere too. I also called a GI doc and asked them to order a colonoscopy for me too. If there are any issues with insurance, I will fight them to cover it. I don't want my kids to be orphans!

On a more positive note, we bought our plane tickets for our Hawaii trip in June. We are getting super excited to go on this trip! And, no chemo for a month!

Tender Mercies and Mood Lifters since the last post

• We both had a REALLY hard weekend and a sweet ward member who checks on us regularly came over and gave both Scott and I incredible blessings. I could feel the love he, and the Lord, have for our family through these blessings. The blessing he gave me was probably the most comforting one I've received in my entire life. This man and his wife have become like our adopted parents through this process and we are so grateful for all they have done for us. I know we can count on them for ANYTHING! Oh how we love them!❤
• The Monday following Scott's chemo, some ladies from the ward came over and helped me clean and sanitize my house. Many of them said they could come over again and help as needed. That was really reassuring to me that know that there are people there to help ease the burden so I don't have to do it all myself. True, my kids can help clean the house, and they do help out and do their assigned chores, but the deep cleaning to help kill the germs sometimes requires a little more elbow grease than three teenagers and two little boys can offer. 
• We got family pictures taken yesterday by a dear family member. I can't wait to post them! :) We haven't had family pictures taken in about five years. It was so nice of her to help us capture some sweet family memories.
• An amazing, long conversation with another dear family member who has gone through caring for a loved one with cancer; in her case it was her child. He's happily cancer free for the last 3 and 1/2 years. I haven't talked to her in years and it was wonderful to get her perspective as she went through this process. A good listening ear from someone who has been through almost EXACTLY what we're going through was such a comfort to me. I look forward to talking to her a lot as we go throughout this process. 
• We've started implementing small lifestyle changes that will help improve our overall health. We've stopped eating sugar (which is huge, we both have a sweet tooth), we're doing a lot of juicing and having lots of smoothies. I've tried some yummy healthy recipes that, surprisingly, almost everyone in the family actually likes. 

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. :(