Chemo

Week 3: Chemo

11/24/24

There are a lot of parts of this journey to beat cancer that are scary, mostly from the unknown and what’s to come in the future. This is a big growing experience for us with lots of emotions all around. Through it all, we are grateful for the support and love we have received.

Seeing your wife put cabbage leaves down her bra is strange but is also very sad in our circumstances. Kylie has such a unique bond with each of our kids every time she nurses them. This bond has been different with Tommy because he is such a calm baby. They just sat together on the couch for the first 3-4 weeks of Tommy’s life together. The hardest part of having Cancer for Kylie is that she has to wean so soon in Tommy’s life. We know people never nurse, and their babies are fine. Tommy will be fine, it’s just giving up the close connection and bond. She is trying to wean as fast as possible without getting mastitis on top of going into Chemo. 

Last week someone gave us a large freezer to use to store donated breast milk in. Today, some wonderful folks who were visiting their kids in the area brought over a large cooler full of frozen breast milk. Over 200 oz of the liquid gold. Kylie is good friends with their daughter-in-law, but still, they only met and talked to us at church for a few minutes. I did find out they are opening a Crispy Cone in Florida so that is good to know next time we go down there. I love that place. It amazes me how many people are willing to help and serve us. 

Everyone at church today was so kind and loving. Some people asked me specifically how I was doing personally, which is nice. Sometimes it is hard for me to answer 100% honestly because I feel like I have to always be doing good. But that goes back to what I talked about in another blog post a couple of weeks ago. Life is not all butterflies and rainbows. It is 5 % happy and good and 50% negative. Sometimes it is negative or hard for a long time before it levels out and becomes positive again. Not to say that we won’t have good, happy moments during hard times but that hard times may continue for a while and then the relief will come like the calm after a summer monsoon. Sometimes I feel like I have to not show the hard parts of life to others. It is also true that maybe I don’t want to cry at church. I wanted to have a place where I could feel like nothing changed. I couldn’t help it though, I ended up crying at church and that is okay. 

Kylies’ and my viewpoint on Cancer is much different now than it was a few weeks ago. When she was first diagnosed, we felt almost as if it was a death sentence. Now we have learned so much and know that just because someone has cancer, does not mean they will die. Could they die from it? Yes. Does it quite possibly lower their life expectancy? Maybe. Are cancers curable? Yes, most of them can at least be put in remission. Some can be curable. I was able to feel this at church today, peace that it will be okay.

11/25/24

I usually try to wake up earlier than the kids so I can have some time to exercise, do a course that I am taking, and work on tasks like writing this blog. This morning was no different, I woke up, did my tasks, and got Willie out of bed when he woke up. A little later, after eating breakfast, he went barging into Kylie’s room. Pushing the door open hard and yelling “Mommy! Is Tommy awake?” He loves seeing Tommy awake so much that even when Tommy is clearly sleeping, with his eyes closed Willie says “He’s awake!”. 

I followed him in and looked at Kylie and could tell she was on the verge of tears. I walked over to her bed and sitting down on the edge of it, asked her what was wrong. She told me “I just fed Tommy for the last time.” Sobbing, she put her head on my shoulder and grieved. 

A package arrived on our front porch today. I got Kylie an early Christmas gift. It’s a beautiful picture of Jesus Christ walking down a path with two children. I know how hard this has been on her and wanted to get her something to help remind her of Him and His power. And I’m not the only one who has sent her a gift. Friends have sent rings, blankets, and stuff for the kids. It is amazing.

Later that day Kylie got a wonderful Priesthood blessing from Brad. I love hearing Brad pray and give blessings. He is a great example of kindness, gentleness, and love. Kylie is his only daughter, his first baby. I am so blessed to be able to see the Pauls relationship with Kylie and be a part of their lives. 

11/26/24

Today was Kylies first Chemotherapy day. I went with her while her parents watched the kids. She is so brave. There was a nurse in training helping with the Chemo, which was nice, we got to learn more about the process and had all our questions answered just by listening to the details shared.

They started her infusion with Benadryl, Pepsid, and Steroids. This was the most uncomfortable part of the whole thing for Kylie. Because the Benadryl is given at a higher concentration than the pill. She had a little dizziness, nausea, and weird feelings. If you have ever taken Benadryl you know it makes you sleepy, so she slept for a bit. I took Benadryl only once in my life. I was on my mission for the Church and had really bad allergies. I took a Benadryl pill not reading the label that said it would make me drowsy. The whole day as we met in people’s homes teaching them the Gospel, I could barely keep my eyes open. At one point I even fell to sleep haha. So I have never taken Benadryl since. But they give it to the Chemotherapy patients because it’s common to have allergic reactions to some of the drugs.

She had these drugs pushed through over half an hours time. Then she had immunotherapy for half an hour. Then she had Taxal for an hour (two nurses have to administer the Taxal). Before she started Taxol, we put the Suzzie pads on her hands and feet. She felt like she was in a winter storm without gloves. Her hands were freezing. Next time she wants to wear thin mittens so the cold is a little farther from her skin. The gloves do have a protective cloth layer between the ice pack and the hand but still. Her feet were fine, probably because she was wearing the thick Costco Puma socks. We took the Suzzie pads off at the end. She took her gloves off a few times throughout the process. After Taxol, she got Carboplatin for an hour. Then she was done, took the port needle out and we packed up and left. 

Kylie is the youngest person there by far. Cancer does not discriminate though. Next week she is going to get her eyebrows microbladed as they will fall out.

During the treatment, I just sat there staring at her, feeling so blessed to be able to have her in my life for these past 8 years. We have done a lot of things together and have been through a lot of things together and had lots of fun together. As I stared at her I thought back on all these good times we have had. She is my whole life, my best friend, and the reason I do a lot of things in my life and work so hard to improve myself.  

The doctor came around towards the end of the treatment. He was so kind and uplifting. He said “We are going for a curative treatment here. Nothing you did caused this, nothing you didn’t do caused this. You’re going to be fine.” He expresses such concern and cares for his patients. We are grateful to him. 

After we left, we decided to go to Trader Joe’s to get a few things. We were driving on some pretty backroads and there were a lot of trees that were changing colors. They were very beautiful. Kylie said, “These trees are a tender mercy for me.” She is such a sweet girl because she is right. This reminds me of a time many years ago when we were driving and the sun was setting. She said, “God painted this for me.” Gesturing to the pink sky. “He knows pink is my favorite color.” She has always believed in God doing little things for her. I believe it too, that he does little things for all of us on an individual level. 

We got home and spent time with the kids. They had a lot of big emotions, which is to be expected as they are spending lots of time with other people and we are their safe space. 

At 4 am Brad and Kristi left. We are very grateful they stayed extra long to help out. 

11/27/24

Today was mostly normal for Kylie in the morning. I took the kids out to do a few things and play at the park. 

During Willies nap, Kylie called me and said she needed help. I was in the laundry room with Tommy listening to the dryer go so he could sleep for his nap, I did not hear her. Emmie came and got me and told me Mom needed me. She was feeling very faint so she laid down on the bed and then took a nap. One of the problems with weaning off breastfeeding so fast (in any situation) is that the milk doesn’t have time to get less and less over time. This causes a buildup of excess milk that is very painful and uncomfortable. Unfortunately, this is what happened to Kylie. To help with this, she did something a friend suggested and put some Epsom salt water in her Hakka and put that on. It helped. 

Yesterday the nurse said we probably have about three weeks with Kylie’s hair before it starts getting tingly and falling out. So today Kylie made an appointment to get it cut and get it turned pink.

11/28/24

In early February I read a book called The Compound Effect by Darren Hardy. In that book, he gives many examples of things compounding through little choices every day. One example he provides is wanting to increase his love for his wife. He decided to write in a notebook one thing about her every day that he is thankful for, then give it to her as a gift on Thanksgiving. I decided to do that, so in February I got a pink notebook and started writing something every day that I was thankful for Kylie about. It was good for me to do at the time because I was very focused inwardly and with all the things I was dealing with internally. I have resolved some of them since and am in a more stable place. For example, I didn’t like how I was treating my kids so I worked on that and got a book to teach me better parenting skills and heal my inner child. 

As I’ve been doing this thankful book, I have noticed a few things this week. The first is that the notebook is pink. Our family’s color is pink now. We see life through a pink lens now. The second more important thing is that as I sat down to write each night, especially lately, it became easier and easier to write something that I was grateful for and it increased the love I feel for my wife.  

Emmie helped me wrap up this book with old pictures she drew. Kylie opened it and tears came to her eyes as she tried to read, probably from trying to focus so hard on reading my handwriting. She looked at me and said, “Thank you, you did this before you knew I was sick?” This was a tender moment. I love my wife and throughout writing those little notes, I felt my love grow and expand in many ways.  

The compound effect works.

In the past, we have done a Thanksgiving day 5K and we were planning on doing one this year. It did not work out for us this year so instead, we did a nice walk around this park that has Soccer fields, Pickleball courts, Sand Volleyball, Playgrounds, and a cool Disc Golf course in the woods. After the walk, Kylie and I sat and chatted on a bench while Emmie and Willie played in the sand at the Volleyball court. It was a beautiful day. 

Later some amazing friends brought over Thanksgiving dinner. I was originally thinking I could have cooked stuff but I am so glad we let people serve and help us. It has been an overwhelming week and having people bring dinner, especially on Thanksgiving, was very special. Plus the food tasted delicious. Kind of like when your Mom, Dad, or a loved one would prepare food growing up. For some reason, it just tasted way better than if you made it yourself. Probably because it’s infused with LOVE.

As we ate we went around the table saying what we were grateful for. Kylie and I cried as we expressed gratitude for each other and the kids and those people serving us. Emmie said she was grateful for her Mom and Dad and Willie and Tommy. Willie said he was grateful for Chicken, haha thinking we were eating chicken. 

All things considered, it was a good Thanksgiving and we found a lot to be grateful for. 

11/30/24

Today, Kylie was feeling okay. She has been getting a little nauseous if she does not eat much. She told me yesterday, after the few naps she took, that the body goes down 10% each Chemo treatment, then up 5% before the next one. It trends down. That math doesn’t add up because otherwise, she would go down to 0%. 

She was feeling good enough to go out so we did 2 things today. The first was a yearly tradition that we started doing a few years ago when Emmie was small. We go to Target and each person gets to pick out a new ornament for the tree. Target has a great selection of decently priced ornaments that are fun. This year Kylie got a pink velvet bulb. Willie got a Bronchiasaurus dinosaur. He was so excited. He loves Dinos. Emmie got a Clarisse figurine ornament, the girl reindeer from the classic Rudolph movie. I got a stick of butter with the wrapping on it haha. It looks just like a butter stick and I can’t wait until someone tries to squeeze it. 

This was the first Christmas tradition we did this year and tomorrow we will do another one we call the Christmas Box. I noticed in my heart that traditions carry more weight this year than in the past. They also bring some normalcy to our lives and to our kids. We are glad we spent some time creating them in the past. 

If you are thinking of creating a tradition for the holidays, do it! 

After this Kylie went and got her hair cut and got it died pink. It looks so good and is so cute. I’m excited that she can do this with her hair before it starts to fall out. And when I look at her, I just get teary knowing what she is going to have to go through. I don’t even think I have a deep understanding but I understand a little bit. 

To round out the night we went to a fun Friendsgiving. The food was amazing, the friends were so fun. We are so blessed to be surrounded by such great people who invite us to things. Next week Kylie has Chemo on Monday, we have one of her cousins coming to stay a few days with us and then we will be on the weekend again. 

We are grateful this week and every week for all the support and love we have received. We are grateful for friends, family, and friends of friends who have sent us things, brought us meals, and more. There is over 400 oz of generously donated breast milk,l in our freezer, countless meals, to paper plates and cups. Things donated to make our life easier so we can focus on what’s most important. Healing Kylie and our family. Healing comes from doctors, medicine, and Jesus Christ.

Thanks for sticking around, comment and share if you feel this blog could uplift and help others. 

#kyliebeatscancer