Getting ready for Chemo

Week 2.

11/18/24

Yesterday we told Emmie why Mom has been going to the Doctor so much. We let her know that mom has cancer. We also told her that treatment would make mom’s hair fall out and make her sick. We told this to Willie and well as explaining to him that lots of people would be coming to watch over him and play with him. Starting tomorrow with Papa and Kiki (Kylie’s parents). He just says oh, ok. He is so accepting of changes, except if you want to change his shirt or pants lately haha. 

Emmies biggest concern was “I don’t want mom’s hair to go bald.” She’s so sweet. She mentioned it again to me when I went and lay in her bed before she went to sleep. 

Today Kylie was supposed to get a biopsy on this lymph node above her collarbone. She went to Greenville and got it looked at but they decided she didn’t need one. 

Kylie was also told she was denied some other scans that needed to be done. She texted me and so I called the insurance company. They were kind and explained everything to me. The PET scan was denied because the insurance wanted her to get a CT scan first. The brain MRI is still waiting to be approved or denied. 

Thankfully Kylie was able to get an appointment for a CT scan on Wednesday. We are hoping and praying the other scans will be approved so she can start treatment. 

And her first round of Chemo showed up on her calendar for the Monday before Thanksgiving. Boy, do we have a lot to be grateful for? Modern medicine, our family, and so many friends showing support and love. 

Tomorrow Kylie gets her port placement. To help make sure the area is clean she has to use Dial soap to clean the area below her collarbone and take a shower in the night then another one in the morning. The kids and I went and got soap from Walmart today. Emmie stayed home from school which was nice. She’s such a good little helper and I really like having her home. 

For the port placement, Kylie will have to be put to sleep. We have to get there 2 hours before. The surgery only takes about a half hour, then she has to recover for up to 2 hours. A long day but a vital piece to being able to get Chemotherapy without having to get stuck in her arm each time. A port will allow her to have a more sterile area for transfusion and let her arms be free to hold a book or do other things while she sits there in the chair.

We also had some great friends bring over a freezer so we can store all the breast milk that amazing women are donating so Tommy can keep getting breast milk. While he could just do formula and be fine, we really appreciate all the help because Kylie usually breastfeeds until the kid is one year old. 

A GoFundMe was also created for us. This will allow us to have some peace to know there is some buffer there. The future is so unknown right now. Maybe we need lots of extra cash to pay for treatment and other things. Maybe we need it for help around the house or for other things related to the healing process. We just don’t know. Also, this will allow people who want to help out but aren’t sure how a way to support. I have donated to many GoFundMe campaigns when people are in need. 

We feel so blessed loved and supported by our friends and family. We love all of you. 

11/19/24

Brad and Kristi, Kylie’s parents got in at 10:45 last night and were up early to get Emmie to school. They watched Willie today while we were gone all day getting Kylies Port placed. 

We went to the Doctor today. We got there at 9:30. 

Kylie checked in and then was called back to a nice recovery room where she got her vitals checked and donned a nice purple paper robe. She looks like a Purple Crayon! 

The doctor came in and talked to Kylie then the nurse came back in and got an IV started. 

Next, the anesthesiologist came in and told Kylie what kind of drugs she would be getting to help her go to sleep. And then he left. We both commented he looked really young and how excited we were for him to be in this profession. 

The nurse then put up the bowling alley bumpers to keep Kylie from rolling away and then we waited just a few minutes for the operating room nurse to come in and give Kylie a relaxing medicine and wheel her to surgery. Before she got wheeled away the nurse said you want to say goodbye or kiss? We kissed and then I followed them out of the room, carrying Tommy in his car seat. As we separated, Tommy and I to the waiting room and Kylie to surgery, the nurse again said “You want to say goodbye?”. Haha, she’s so kind making sure we know we love each other. 

A few minutes after Tommy and I sat down at the waiting room area the doctor came out and asked me about Kylie’s neck mole. “Does the mole have any sentimental value? Because it’s right where I need to go.” 

I said “She just went and had it looked at a few weeks ago and talked about getting it removed. No sentimental value, you can remove it.”

It’s a strange thing to make a permanent decision for an adult. Second guessing, did I make the right choice? But I know full well that Kylie would want me to make any choice necessary that will help her get treatment and beat this cancer. 

So she’ll come out without that mole. It’s a birthmark mole, her dad has one in the same spot. So sadly they won’t match anymore. But now Kylie can wear those Hera necklaces that were cutting into the mole. 

After the Doctor left Tommy got hungry. I got his bottle out and started feeding him. As I was feeding him this nice lady came over and chatted with me. 

“How old is he?”

“Eight weeks”

“He’s a sweetie, I’m a nana too.”

“Oh yeah, how many?”

“Six”

“Any this young?”

“No, they’re all grown now.”

“Oh wow. Yeah he’s a sweetie”. 

“Well holler if you need anything, I’m just over here.” She said gesturing to her seat. 

She walked back to her seat and sat down and I thought. Wow, people are so kind and loving. 

About 45 minutes later the doctor came out and told me they were done. We then waited for about 20 minutes more until we could go visit Kylie. 

We were led through a maze of doors opening and closing, ID cards being swiped and scanned until finally, we walked through this row of people on both sides lying in beds. These are the people that were sedated, I half expected something scary and creepy to pop out from behind a curtain. But all I saw were people of all ages and genders lying there peacefully post-surgery. I prayed for each of them as I walked by knowing they could be in here for any multitude of reasons. 

We got to the end of the row and I was surprised to find a little room separated from the other patients. It still had curtains but they were inside the glass walls. We walked in and there was Kylie. Her eyes were barely open and she had just woke up in the middle of a deep sleep look. Stone-faced. Emotionless. 

Just seeing that and her with all the cords starched to her body and the mole being gone, made my heart ache. I so desperately wish it was me in her place. Doing this and suffering in these ways. But I know I cannot, but there is a person who has already been where she is and where she will go. Physically, mentally, and emotionally, Jesus Christ has felt it all. So I will trust Him and his love to carry my wife in ways I cannot. 

The nurse chatted with us about the dos and don’ts. She said Kylie had a choice to drive because turning her head would be painful. Most movements are painful for her right now, at least the ones involving the right side of her upper body. This makes sense because the port placement is on the pectoral muscle which is a big muscle, and the catheter is in her neck so turning it hurts due to the surgery.  Then she helped me have a changing pad to change Tommy on the ground. Kylie held Tommy for a little bit and that helped her feel better. He is her little snuggle buddy.

Tommy and I then left and got the car. Tommy Said he wanted to drive. I thought it was a great idea so I let him while  I took a quick nap in the backseat.  

We parked in the front of the hospital and watched patients come out and load up in vehicles. I saw someone who was in the sleeping hallway with Kylie come out get in a car and drive away. We waited, Tommy was sleeping so it was fine. After about 15 minutes, a nurse came up to our window and asked if I was waiting for a woman. Named Kylie? I said. Yes. 

Then I saw her sitting in her wheelchair patiently waiting for us. She was behind a window directly in line with the passenger window of the car we were in. I looked at the front hospital door but never out the side window haha. She couldn’t remember what car we drove because we drove the rental that Brad and Kristi were using. Makes sense. It was a white Buick. 

We drove home and stopped at a gas station to feed Tommy, then he went back to sleep and we got the rest of the way home. Due to the pain, Kylie has to turn her head like Batman in the Dark Knight trilogy. Not really turning her head but rather her whole upper body. 

We spent the evening eating and chatting and playing with our kids and Brad and Kristi. 

The GoFundMe has shot up as generous people have donated. I can’t describe the feeling of safety this brings the peace and comfort of knowing we have security. I also feel a solemn duty to use these funds wisely and appropriately for the purpose they are given. Almost as if they are sacred funds and indeed they are because they are healing my wife. 

11/20/24

Finally, Kylie got her CT Scan and Bone Scan today. She left at 6:50 AM with her mom and they drove to Greenville. After driving through the rain for 1.5 hours they made it to the office where Kylie needed to be. She got a fluid inserted into her arm, a radiotracer. This tracer collects on your bones where there are irregularities which makes it show up on a scan. 

While they waited for the tracer to do its thing, Kylie went and got a CT scan in the same doctor’s office. They had to inject her with contrast so the contrast could show the organs more clearly. 

These were the two tests the insurance said she needed to get before having a PET scan. Hopefully, now, she can get a PET scan as soon as possible. We know the Doctors and nurses are on Kylie’s case and doing all they can to get things rolling for her. 

While Kylie was gone, Tommy and I went to Tommy’s well-check while Willie stayed home with Papa. Tommy is a sweetie and was so calm the whole time until he got his shots. It’s always sad when the little kids have to get shots but he did okay. Unfortunately, his weight dropped percentiles by quite a bit. The Doctor and I surmised it was from the weaning that Kylie has to do and that he is taking bottles of breast milk. Sometimes we will feed him a 3 oz bottle and he is calm and content, but perhaps he did not eat enough for him. He has a weight check in two weeks, let’s get his weight up. 

This is the hardest part of the whole thing for Kylie. Having to give up breastfeeding with Tommy. On top of that, she hasn’t been able to pick Willie up in a long time. Because of pregnancy then the postpartum waiting period and now this. Sore neck and arm from the port, weak and lesser energy from the draining nature of so much uncertainty and doctor visits. It takes a lot out of you. Tonight when I was holding Kylie in bed she said she had a lot of tears. And that today just felt unfair because of all those reasons. 

None of this is indeed fair for her, for us, or anyone else going through a similar thing. In fact it’s so unfair that science doesn’t know what causes cancer and can’t pinpoint an exact reason as to why someone has it. Sure there are or could be contributing factors related to a person’s lifestyle, or some cancers could be caused by certain activities, but most just happen. Kylie doesn’t smoke or drink and lives a healthy lifestyle so this just happened. Just because someone smokes or drinks doesn’t mean they will get cancer either, those are just some of the leading known causes of cancer creation in someone’s body. 

I’ve been thinking a lot about this concept I learned from my life coach. I talked with Kylie about it a few weeks ago and she brought it up a few days ago. She says that life should be 50/50. Life is 50% good experiences and 50% bad experiences. We need to stop thinking that life is supposed to be happy and rainbows and butterflies all the time. It’s supposed to be good and bad. There has to be opposition in all things. We want to have to full human experience and that has to have negative experiences in it. Because those allow us to learn and grow and become better than we were. Think about it, If every day you were supposed to feel happy and someone told you about something sad but you were happy about it, that wouldn’t be right. We need these sad and hard emotions and times because they cause us to have growth experiences and allow us to be there for others when they go through similar things. 

Life is unfair sometimes and this experience feels that way. But it’s how life is. It’s part of those negative experiences we all have to go through. And while there is no explanation as to why this happened, we are here. And yes it’s unfair that Kylie can’t hold and pick up Willie, yes it’s unfair that she has to stop breastfeeding her 2-month-old. Yes, it’s unfair that she has to go through this. And on the other side of this hopefully we will find a reason and a purpose to this. And we know that everything unfair about life will be made right through the atonement of Jesus Christ. We believe in a God of justice and that means that everything we have lost will be restored to us one day. Made right somehow, and given back to us in some way I don’t understand. But I believe that he is a God of justice. Justice will be served. And mercy will carry us through this hard time. 

11/21/24

Today we had a long day at the doctor’s. The first person we went to see was the Financial Counselor. She told us the cost of each treatment and where our insurance stands. Thankfully, we have good insurance and will only have to pay $200/treatment until we reach our out-of-pocket max which will be soon. The cost of each treatment is $49,220. There is a total of 16 treatments. Without insurance, there would be no way for us to get through this without massive debt. I feel bad for people who don’t have insurance and hope that they can get on 

After we met with the financial counselor we went and met with the Doctor. He came in and greeted Tommy, who everyone was ogling over. They rarely see babies on this floor and the nurses loved him. The doctor shook our hands and then said “Hey, Tommy”. Then he sat at the computer and turned off the lights and said “Just turning these off for a bit, T-Man can rest”. Then the doctor proceeded to scroll through whatever he was looking at on the computer. We knew he had to be looking at Kylie’s bone and CT Scan. I averted my eyes because I didn’t want to see any bad news, thinking that not looking would delay the inevitable of me having to know what was on those images. 

After about 5 minutes of scrolling and clicking, the doctor turned a light on and showed us the bone scan first. He said “Everything looks good there, we usually see darker spots in the pelvis and the sternum and the shoulders, so that looks good, your spine looks good. On the CT scan, there is this little thing that we call a knuckle. And I think its just a bundle of blood vessels together. You see, the CT scan takes pictures of you in slices, we can’t see the whole image down the the last detail at one time.”

 Just in slices, almost like taking a loaf of sliced bread and standing it up on the end. If you take a piece out and look at it, it may have a hole from an air pocket. Nobody wants to eat half a piece of bread, so they put that one back and get another and it too has an air pocket hole, only smaller. The CT Scan is sort of like that, you see one slice of the picture at a time. 

He showed us the images and the area he was talking about, when looked at in a full image it was a little white blob in Kylie’s lungs. But when broken apart in the slices, you could clearly see 5 or 6 veins coming to an intersection at the exact spot. The Doctor said he thinks it’s nothing and the PET scan will verify that. He also does not want to wait to get one. We are going to start treatment now and will do the PET scan when Kylie can get in.

He gave us time to ask questions and Kylie asked “Should I be concerned about any pain in my body, like when should I call and let people know something is hurting?”

The doctor came over, grabbed Kylie by her shoulders, and said, “That pain in your back, it’s not cancer, that pain in your stomach, it’s not cancer, you’ll have pain and discomfort just from living, it’s not cancer.” Kylie laughed in relief and then the doctor said goodbye. 

We then met with one of the nurses and we had a chemo learning class with one of the nurses where we learned all about Chemo and the treatment Kylie will be having. She will be having 16 rounds of Chemo. The first 12 weeks will be every week and then the 2nd 12 weeks will be every third week. We learned all about the drugs that will pump through kylies body to kill cancer and the many side effects they have. Thankfully the doctor also prescribes other medications to help with the side effects. The nurse even told us that chewing ice during treatment would help her not get mouth sores. One of the side effects could be infertility, the nurse asked if Kylie wanted to prepare for artificial insemination by freezing some eggs if we wanted to have another baby down the road. We said no. We feel good about where our family is at and if God wants us to have another baby, something will happen. We feel so blessed to have these kids because we know many people, unfortunately, do not get that opportunity to raise kids for one reason or another. 

After meeting with the nurse, we went and saw the Chemo floor. Chairs all lined up with a few patients in them. The Chemo chairs look like blue recliners, hopefully, they will be just as comfy. The whole room was decorated for Christmas.  Everyone was loving looking at Tommy. A couple of the nurses even held Tommy. After seeing the chemo floor we left and the nurse who helped us checkout said the other nurse who held Tommy told her “I held the baby, He has a new black auntie.” We all laughed and then let this lady hold Tommy. Now he has 2 black aunties. 

We then went home and relaxed for the rest of the day. 

11/22/24

Today Klie fasted for the day in preparation for a PET Scan at 5:40 PM. Besides that is was a pretty normal day. 

5 hours into her fast, she got a call saying the insurance denied coverage for the PT scan. We are baffled as to why because they denied it in the first place so she could get a CT scan and bone scan. 

After a little talking, Kylie and I decided to go on a date for dinner and a movie to make up for her fasting and to have our last date before Chemotherapy started. Which is really the first date out of the house we have had in a while since having Tommy. We went to a delicious Mexican restaurant called Papas and Beer and then we went to watch Wicked in the Theatre. It was wonderful to spend time together, talking and pretending our whole life hasn’t changed. 

Thankfully, one day, our lives could be back to how they were. Chances are that by then, we will have learned and grown so much that we won’t want them to be back to how they were. Struggle produces growth, learning, and progress. This is going to be hard but with God all things are possible.

#kyliebeatscancer