Moving into Maintenance!

 The last nine months have been a whirlwind. It was weekly treatments, waiting to feel better from the treatment, time to do another treatment. God continues to show us blessings despite the circumstances we face. 

I had my CT scan and cancer markers done last week. We met with Dr. Skinner this past Monday to go over the results and the game plan moving forward. 

The CT scan did still show some small tumors around the bladder, which we expected. They have shrunk since we started chemo and the plan is to keep them at bay using the maintenance IV therapy. This is the Avastin generic which prevents the cancer cells from creating their own blood supply, which keeps them from growing bigger. I have gotten this medication over the last 9 months every 2 weeks. I've tolerated it very well which only some minor nosebleeds. The major potential side effects are high blood pressure and kidney issues, neither of which have been a problem so far. We will continue to monitor my labs and blood pressure. I will get this IV infusion every three weeks indefinitely moving forward. 

The new cancer marker we have been trying to monitor over the past year has proven not to be effective as it jumps all over the place. Since it doesn't match with what is seen on the CT scan, Dr. Skinner decided to stop monitoring it. We agreed since it isn't adding any value to my treatment plan. 

We will see Dr. Skinner every 3 weeks with the infusions for the first bit of this maintenance phase to make sure that I'm tolerating it well. We will scan again when needed based on symptoms, labs, or time. 

Lately, we have enjoyed trick or treating with the kids and our family. Wilson had come up with the idea to do a group costume and he decided what everyone would be. He chose to be Peter Pan, Parker as Tinkerbell, me as Wendy, Wil as Captain Hook (hence the handlebar mustache that he trying to convince me he needs to keep), Grandma as Tiger Lilly, and GranTed as Smee. Wilson did want the dogs to be the mermaids from the lagoon but I didn't get around to making that costume. I am quite proud of Wil's jacket as I made that from a suit coat I got from GoodWill. I also made Smee's costume from shirts from GoodWill. Parker initially was not a fan of wearing her wings, hence the crying, but she got use to them. We went around with our friends, the Hemphills, and some in our neighborhood as well. We all had a blast!

Wilson also had his last Quickball game of the season. They got to play on the turf field, so less kids played in the dirt that game! Wil was a great coach and pitcher for the season too. Coach Adam was kind enough to bring ice cream sandwiches to celebrate at the end of the game. Next sport up will be basketball in December at the YMCA. Wilson is very excited to get started. 

Prayer Requests:

1. Praise for good CT results!

2. Pray for continued protection for my kidneys and blood pressure while on the maintenance IV therapy. 

3. Pray that my port-a-cath (my permanent IV in my chest) continues to work without issues. 

4. Pray for the long acting side effects from chemo to wear off quickly (fatigue, GI upset to level out, weight gain). 

Starting Round 8

 Round 7 is completed and started the first week of Round 8 this week. We met with Dr. Skinner on Monday. My cancer markers were both down and my exam was good as well. 

The plan is to do a 3 week cycle this round instead of 4 weeks. We planned a family vacation to the beach on what would have been my off week on the 4th week. That got all messed up when a few rounds ago, my counts were too low for treatment and it was held for a week. We are still going to the beach and just will miss one week of Taxol. Next Monday, I will get the Taxol infusion then the following week will be off and enjoying the beach. October 4th, we will start the last month of active treatment. After that, we will transition into just the Avastin every 3 weeks. 

My nails have been an issue for the last few months. They are coming off of the nail bed. I keep gel polish on them (that I do myself) to harden them to prevent them from bending and breaking. They are sore most days. Taxol is causing this and hopefully will resolve. 

I was also able to get my COVID booster shot on my off week. That night, I had the sweats and had a headache for about a week. I feel back to normal now!

We were able to celebrate my 35th birthday at the local baseball game- the Winston-Salem Dash. We had a suite, lots of food, and fellowship. Thank you for all the texts, cards, and messages for my birthday! I was surrounded by love! Wil surprised me with flowers at work the day before my birthday. 

I went to see my GI specialist this week as well. I'm on a lot of medication and it is trial and error a lot of days trying to manage swinging between constipation and diarrhea. The plan with my medical history is to do a colonoscopy in December, after I have had some time to recover from finishing chemo. 

Prayer requests:

1. Praise I was able to get my COVID booster shot and tolerated it well. 

2. Pray for my cancer markers to continue to decrease and CT Scan to show improvement. 

3. Pray for a good week off at the beach. 

4. Pray for some relief from my nails and GI upset. 

Walk by faith, not by sight

Our schedule was moved up a week for my CT scan and meeting with Dr. Skinner. I had my CT scan last week and we met with Dr. Skinner yesterday for the game plan. 

They are able to use my port (my permanent IV in my chest) for the scan, saves my poor arms from a stick. I haven't trimmed my hair in a couple of weeks so you can see, I still have some but it is really thin. My eyebrows and eyelashes are basically non-existent at this point. 

The CT scan showed the one nodule that could be felt on the physical exam is completely gone, the chain of tumors in my bladder wall and around it have shrunk, and the area in the front of my abdomen is smaller. 

We were given the option of doing three more rounds of the Taxol and Avastin or changing to just the maintenance Avastin infusion. After discussing it with Dr. Skinner and prayer, we decided to continue with the Taxol and Avastin for 3 more months. 

The goal of my treatment is to knock my cancer down for as long as possible knowing that it will rear its ugly head again. Then we reassess and go back into active treatment to knock it back down. There are still a lot of treatment options in our arsenal for the future. 

Obviously, our prayer had been to be done with the Taxol but are so very blessed to have a treatment that is working. There are many we know that aren't in our same boat. 

With my IV iron and hemoglobin coming up, I have had more energy and felt better. I have been trying to jog and walk. It is slow as a turtle moving through peanut butter - but I'm moving! I love my new shirt from Emily at Fleet Feet! 

Prayer requests as we continue treatments:

1. Praise for a wonderful medical team (Dr. Skinner, Rachel our pharmacist, our chemo nurses, Dr. Skinner's nurse and assistant- Debbie and Tesha) . For handling everything from chemo and side effects to insurance approvals to all of my paperwork. 

2. Pray for endurance for the months ahead for me and our whole family. Especially pray for Wilson as he has been praying for us to be done with treatment and Mommy's hair to grow back. 

3. Pray for my white blood cells to stay up and for me to continue to tolerate chemo well. 

4. Pray for us to see glimpses of God's goodness in this journey.

Round 5 completed- Round 6 started with a few bumps in the road

 Round 5 is all done and round 6 is underway, with a few hiccups to start. Week one was postponed a week because my ANC (absolute neutrophil count- the mature white blood cells) was in the 600's. For treatment, they want it to be above 1500 so treatment was delayed a week. 

Since I had little to no immunity, I was out of work for the week and wore a mask around the kiddos. Parker had a snotty nose and we just wanted to be careful. 

The following Monday (8/19), Wil and I prayed for my labs to improve enough to get chemo. My ANC only came up into the 900's, still too low for treatment. We had to wait awhile for the decision for the treatment plan. 

I just broke down in tears. I wanted my poison, I wanted to be done with chemo and we are so close to the end, Lord willing. 

Thankfully, we have an amazing oncologist and pharmacist in our corner. The plan was to have chemo and then come back for the following three days to get a shot to boost my while blood cell production. We had to wait for insurance approval before the premeds could infuse, so it was a very long day. 

The main side effect I had from the shots was bone pain. I felt it mostly in my hips and shoulder, nothing unbearable but not comfortable. 

The plan moving forward is have two more weeks of chemo. The week of August 9th, I'll have a CT scan. We will meet with Dr. Skinner on August 16 to review labs and the scan. Then we will decide if we move into maintenance Avastin and stop the Taxol infusions or if we do three more months of the same regimen. 

The last month has been a whirlwind. We were able to go to the mountains with our friends, Harrisons and the Hemphills, for several days over July 4th. We had cool weather, able to unplug, s'mores, and fireworks. Later that week, our family enjoyed another minor league baseball game. 

Wilson has also started swim lessons at the YMCA this past week. We have seen improvements in just the week he has done them so far. 

A huge praise to be able to have such a wonderful husband and caretaker by my side. He is my pack mule for treatment days, I have a lot of stuff I like to have! 

Prayer requests:

1. Praise that I was able to have chemo last week. 

2. Pray that my ANC (mature white blood cells) stay up for the remaining treatments. 

3. Pray for upcoming CT scan and cancer markers to show NO EVIDENCE OF DISEASE and we can move into maintenance mode! Pray that if we need to do 3 more months of chemo, to have strength and endurance. 

4 months under my belt

 This week we started the fifth round (5 months) of chemotherapy. We met with Dr. Skinner Monday for the monthly exam, which went well. The plan is to continue all six rounds of Taxol and Avastin then do another scan to see if more Taxol is needed. If it isn't needed from what is shown on the scan, then we will transition into maintenance Avastin. I will have an infusion every 3 weeks and see Dr. Skinner every 6 weeks. 

I have been having an increase of severity and frequency of my nose bleeds. I was referred to an ENT who I saw last week. Unfortunately, my experience was not a good one. Some of the silver nitrate used to cauterize the area leaked out onto my nose and part of my upper lip. That was the only part that burned and hurt for days. That part is healed now after an abundance of Aquaphor but my nose is still bleeding, worse than before. I will be seeing a doctor at a different practice next week, hopefully with a better outcome this time! 

I'm on the generic version of the Avastin, MVASI, which Dr. Skinner has seen more nasal issues, like my nosebleeds. They are going to work with insurance to see if we can get it approved for the name brand Avastin for future infusions. 

My fatigue is definetly getting worse but to be expected this far into chemo. There are some days where I stay in bed and rest for the majority of the day and night. Thankfully, I have an amazing husband who picks up a lot of the parent and household duties so I can focus on getting the rest my body needs. I still have neuropathy (dullness of sensation) in my fingertips but started taking Vitamin B6 which is helping. My hemoglobin is low so I'm starting on an iron supplement to try to boost it up. 

The last month has been full of fun memories as a family. Wilson finished his Quickball season, Parker turned two, and we were able to go see a minor league baseball game! 

Our whole family really enjoyed Wilson's first team sport. He was one of the youngest on the team but he had great skills. We are just working on not playing in the dirt when he gets bored and the listening skills will come with age. Wil was a great coach and volunteer!

We were able to go to Apex to my parents' house to celebrate Parker's second birthday. Parker loves Elmo so I bought some decorations and made the others. She loved them!

 The cousins had a blast playing together. We got to celebrate Aunt Owl's (Wilson's new name for Aunt AL) belated birthday as well. She is the BEST present opener, she always gets so excited. We were able to spend Memorial Day playing in the pool since the chemo room was closed. Wilson never wanted to get out of the pool!

The Winston-Salem Dash Game was such a blast! It was on my week 4 of chemo, which I don't have an infusion, so I was feeling pretty good. It was cloudy and had a good breeze, so we didn't get too hot. We even ran into some of our friends there, the Jacksons! Wilson was able to run the bases when the game was over, which he thoroughly enjoyed! The mascot, Bolt, got was too close to Parker for her comfort. She screamed and held onto me for dear life!

Prayer Requests: 

1. Pray that the chemo continues to work on the tumors and the CT scan in a few months shows remarkable change again!

2. For the side effects (mainly nose bleeds, neuropathy, and fatigue) to be well managed and interventions to work on relief of symptoms. 

3. For endurance for the race ahead, for the whole family, especially for Wil as he is my main caregiver and support. 

Three rounds down- it is working!

 Huge, HUGE, amazing praise to start off this blog post. My CT scan revealed marked improvement to the size of the tumors. This means praise God & it all has been working!

The last month has been full of work, Quickball, Mother's Day celebrations, finishing cancer care bags with Emma, Wil running, and dedicating Parker at church. 

Dario Dinner and treats

Emma and I have worked on these chemo care kits for the last several months. I was able to drop off the "old people" kits a few weeks ago and Emma brought the kids' bags to Brenners this past week. My nurse navigator- Robin- was able to pass them out and the chemo room held on to a few to continue handing out. Emma also made us matching shirts which are just amaing! 

The "old people" bags delivery!

Parker got the stomach but during my Week 2 of this last cycle. Poor thing was pitiful. Thankfully, the rest of the house didn't get it. Parker did have to get COVID tested again but it was negative. We were still having to push fluids to prevent her from getting dehyrdated, so Wil stayed at home with her for my Week 3 infusion. I had my wonderful friend, Ann Batista, who was able to join me! I was able to debut the pillow that we made when we didn't think Wil would be able to come to chemo with me. The nurses got a huge kick out of it! Ann was the one who introduced me to these embroidery kits. I've finshed a few of them already. 

I am so very proud of Wil and his running. We both started running during quarantine last year and he has kept up with it! Wil and his sister, Holly, both ran a 1/2 marathon a few weekends ago at Lake Norman. What you can't see in the picture is that my sister-in-law ran with an old school Walkman... Bless her heart

Mother's day was amazing. The kids (with Wil's help) gave me a wonderful book that features them and their Superhero Mommy. Wil's inscription in it made me cry talking about how I am a true super hero fighting cancer, working, being a mom and wife. 

Grandma opening her Mother's Day present

Ooma opening her presents

My parents were able to come to our house to watch Wilson's Quickball practice and Parker's dedication at church on Sunday. Parker was so excited to see her Pop Pop that she started running as soon as she saw him. Wilson was invited to a special practice for Quickball. 

Parker's dedication was orginally scheduled November 2019 but had to be postponed because I was still recovering from my last cancer operation. We rescheduled it for Mother's Day 2020 and that was cancelled because of COVID. So third time was a charm! We scheduled it during my Week 4 which is the week I don't have chemo so I would be feeling my best. I actually felt up to doing a walk/job interval twice that week. I haven't done that or felt up to that since I started chemo. 

 I put the link here if you want to see it. It is after Ms. Marie does the kids' lesson and at the start of the service. Both kids did a great job!

 https://www.youtube.com/watch?v=N7JzbAquHbA&t=167s

Parking playing with Pop Pop at Wilson's Quickball practice

Sweet prayers for our family

Everyone laughing when Parker clapped at the end of "Jesus loves me" song

We met with Dr. Skinner on 5/17/21 for the results of the CT scan, labs, and treatment. Praise the Lord that it showed that this chemo regimen is working! Tumors are shrinking! The plan is to keep on the same regimen for another 3 months/3 cycles and do another CT scan. Then we will reassess to see if more chemo will be needed. My hemoglobin is continuing to drop and is at 9.6 now (should be between 12-14 optimally). This can explain some of my shortness of breath and fatigue. Even with that, I was able to go on a walk the afternoon after chemo and a job/walk on Tuesday!

Celebratory shaved iced at Cindy's

Prayer Requests:

1. For our friends the Hemphills during their treatment process for Emma's cancer. 

2. Prayers that the chemo care kits are used to show God's love and ours to those battling cancer. 

3. HUGE praise that my chemo is working. 

4. Pray for side effects to continue to be manageable. Mainly fatigue, nose bleeds, and low hemoglobin.