New side effects but effective

Since July, we have done three rounds of the new chemo, had a CT scan, and celebrated my 37th birthday. 

I have been tolerating chemo much better with less nausea and vomiting with each round. Dealing mostly with a lot of fatigue and resting in bed for a wek after the infusion. I started dealing with neuropathy which was just tingling in my fingers and toes. This last round started having pretty severe pain in my feet. I started on gabapentin but not having much relief yet. I saw  the Symptom Management Team yesterday and we have a good game planocing forward. The Nurse Practitioner we saw was amazing and increased my gabapentin and oxycodone. I have an arthritis gel to apply to my feet and was referred to the Integrative Medicine to try acupuncture. 

The great news is that my cancer marker keeps dropping with each cycle and my CT scan showed reduction in my tumors. I have been mainly on a full liquid diet since my last obstruction in July which has been extremely difficult. We got the go ahead to start SLOWLY adding solid foods back into my diet. For the first time in 4 months, we went out to eat as a family. 

For my birthday, Wil had a big surprise for me. I had no idea what it was other than it was about 30 minutes away and it was on a Friday and I had to leave work early. We get off the exit and I figure out we are going to the Greensboro Science museum where you can feed penguins! I thought that was it. Then at the entrance, I see two of my sisters and their families. Well the surprises keep coming, more and more family keep showing up.y baby sister even flew from California and my brother in law drive from New Jersey just to come too! Seeing Anna made me ugly cry.

It was so amazing to get close to my favorite animal ever. They had such funny personalities. They would shake their head at you if they didn't like the type of fish you were trying to give them. I didn't realize that penguins swallow the fish while!

One of the penguins, Niffler, was getting a little jealous when I would give attention to another penguin and would start nibbling at my butt! 

It was such a wonderful surprise and Wil kept it all a big secret. I felt so loved by all who took the time to come and spend time with us. 

Wilson has been doing great in school and loves his teachers. He is about to finish up playing flag football, which has been a lot of fun to watch. Wilson is so fast and loves to play.

We also celebrated Wilson's 7th birthday. He had a bunch of friends over to play in the treehouse that Wil built and the ninja warrior course and have a cookout. The treehouse is amazing, as you would expect from an engineer! Our friends that we met at Holden Beach made the trip for the party too. 

Parker just finished with taekwondo and will be starting swim lessons soon. Her speech therapy has been going so well that they decreased her to once a week instead of twice a week. 

Prayer Requests :

1. For relief for my neuropathy, for better quality of life with it. 

2. For the chemo to continue to work and shrink my tumors. 

3. For protection from any bowel obstructions as I advance my diet with regular food. 

4. Huge praise for validation that the chemo is working well and my nausea and vomiting have been more manageable! 

Three obstructions in July

The last blog post was done shortly after being discharged home from the hospital at the beginning of July. I was not done with obstructions for the month, far from it. I ended up having another obstruction that I was able to manage at home. 

 Then about a week later, I started having pretty severe pain. I was trying to just stay at home but that wasn't going to happen. Our kids were already spending the night at Wil's parents' house, so we started packing our bags and heading to the local ER around midnight. 

I snuck a picture of Wil of how he was trying to sleep that night, in two straight backed chairs with travel pillows and blankets. He never complains and just tries to get rest when he can. I was transferred to the big hospital and placed on the women's floor, where I was when I was recuperating from my first two surgeries. I had excellent care here and was able to visit a friend down the hall who is on bedrest- waiting for her baby to be born. 

 Dr. Skinnner came to talk to us about options while we wait for the new chemo to start working. Since I had three obstructions in one month, two requiring hospitilizations, we decided to stay on a full liquid diet to put less strain on my bowels. You don't realize how much of our social lives revolve around food until you can't partake in it. The plan is to stay on the liquid diet until I get my first scan to evaluate how the tumors are doing around my intestines. This will be after 3 rounds of chemo. 

 The good news is that we were still able to go to Holden Beach with Wil's parents and aunt and uncle for a full week. We weren't sure if we would be able to go, or if we would have to leave early for another obstruction, but the Lord provided a wonderful week of rest and relaxation.

 My skin has fully healed, so I was able to enjoy walking on the sand, being in the sun, and getting in the pool. We met a wonderful family that was renting the house next to ours who had 4 kids. Wilson and Liam looked like twins playing in the water and boogie boarding together. The girls loved just playing in the sand. Wil and I got some baby snuggles in with Ollie who is only 6 months old. Kelly and JT even let us know on the last night that the turtle nest outside our houses was going to hatch! So we got to watch it together.

 It was in 2010 the last time that we were able to witness the hatching, so this was a huge blessing! 

 The Monday we got back from the beach was time for my first infusion of Elahere, my targeted chemotherapy. I received the normal pre-medications for nausea, Benadryl, and steroids but I was getting really nauseated during the infusion. They had to give me some IV Phenergan and Pepcid to help. 

I have never thrown up from chemo (which is saying a lot for 11 years of treatment) until this week. It was a really tough week with trying to do the full liquid diet and being constantly nauseated. I was living on a supply of lemonade and Sprite as that was all that sounded appealing. 

 It has been about a week and a half since my infusion and I'm finally starting to get an appetite back (with the help of some steriods to boost). These infusions will be once every three weeks and hopefully will be changing around some pre-meds for next time to make the side effects more manageable. 

I'll be getting infused on 9/5 since the clinic is closed for Labor Day.

 Wilson also started 1st grade last week. We met with his teacher to give her a heads up with all of our backstory and she was very receptive. He has had a great start to the year and loves Mrs. Hudnall! We are blessed to have this teacher working with him and loving on him while he is at school. 

 Prayer Requests: 

 1. Praise for a wonderful beach trip and being able to see the turtles hatch.

 2. Pray for the side effects to be more manageable for the next chemo- less nausea/vomiting and fatigue.

 3. For strength and endurance for our whole family during this rigorous treatment schedule.

Another kink, another new treatment

Chemo is never a walk in the park. Each one brings its own set of side effects. The one that I have been on for awhile, Doxil, started breaking my skin down- including my mouth with bad ulcers. The dose of Doxil was increased when we stopped the other chemo, Carboplatin, which lead to more issues with my skin and mouth. The worst of it was the week before we were going to the beach with my side of the family. I came home from work and took my socks off, my feet were bright red and stinging/burning. The back of my arms felt like they were on fire, my left side was the worst.

 My instructions were to keep them moisturized, stay off my feet as much as possible, and avoid the heat and sun. Hard to do all of that when heading to the beach, but sacrifices had to be made. We rented a beach wheelchair so Wil was able to push me for walks on the beach in the cool of the evening. I spent most of my time inside reading or playing games with others. Even though it wasn't the normal beach trip, it was still great being able to spend time with our family. 

 We had to push chemo back a week on June 19th because my skin still needed time to heal. If I would have had chemo too soon, my skin would pay the consequence. That means it would be scheduled while Wil was going to Alaska for a fishing trip. He was going to just cancel it but I convinced him that I had been doing so well that we could make it work for him to go. My sister, Lauren, came up for chemo and helped me get the kids off the morning of. My in-laws helped watch the kids so I could rest. 

Then my mom came up mid-week to help me and the kids. Parker had to stay home from school on Thursday because she was diagnosed with strep. Thursday morning, my stomach started hurting and I started burping, all signs pointing towards a bowel obstruction. Then I started throwing up despite my Gtube draining (this is emptying my stomach contents through a tube and into a bag). I knew we needed to head to the emergency room because I couldn't control the pain at home. 

My in-laws were out of town so I called my friend Marie, who was over in a jiffy to watch Parker until my sister, Lauren, could make it back in town. When they say it takes a village, they mean it, especially dealing with cancer.

 In the emergency room, I was diagnosed with a partial bowel obstruction (meaning some flow through the small intestines) and was being admitted to the main hospital. My mom stayed with me until transport arrived to take me. I knew one of the nurses on my transport team which was nice! I was hooked up to IV fluids and getting IV pain meds and anti-nausea meds. 

Meanwhile, Wil is trying to get home from Alaska and God's timing was perfect. There was a float plane coming into camp the next day and he traveled home to find out that he had COVID. So he had to quarantine for a few more days and then was able to come visit me in the hospital. My sisters, mom, and sister-in-law helped out so much with visiting me and helping with the kids. 

Unfortunately, the air conditioning in my room wasn't working at it was 76 degrees in there. A fan from home helped slightly but it is never a good feeling when you are nauseated AND hot. After having issues with a nurse-in-training not using safe protocols when using my port (my permananent IV), we begged our PAs to get me transferred off of that floor. 

 I was transferred to the 8th floor and had the presidential suite! I had a great view of downtown and large windows and a huge room. The nursing care on that floor was magnificant. My labs came back that I had enteric E Coli, meaning traveler's diarrhea. Basically, any small or large stomach virus I pick up is causing inflammation in my intestines that then leads to it being kinked and blocked. 

Everthing cleared up and I was tolerating a full liquid diet, so I was discharged home after 6 days of being in the hospital. I still didn't feel 100% but was able to tolerate medications by mouth and felt confident in managing at home. I ended up losing 11.5 pounds during my hospital stay. 

 The following week we meet with our oncologist, Dr. Skinner, to get a game plan moving forward. My CT scan from the ER showed that my tumors were growing slowly and had more definite margins. That combined with all my skin and mouth ulcers with the current treatment, we decided it was time to try another avenue. There is a new drug out that was tested on high-grade ovarian cancer (quick growing) where mine is low-grade (slow growing) that acts like a Trojan horse. It binds to these specific receptors on my tumor and sneak the chemo in. The hope is that more chemo gets to the tumors and there will be less systemic (full body) side effects. 

I wanted to have a break and we will start these infusions after our beach trip in August. It will be an infusion once every 3 weeks. In the middle of me writing this update, I ended up having another obstruction this past weekend. Thankfully, I was able to go NPO (nothing by mouth- no drinks, no food) and drain my stomach contents from home and avoid the hospital. The obstruction cleared on its own after about 24 hours. 

 Prayer Requests: 

 1. That my skin will continue to heal and have no further issues with it (my feet are still peeling).

 2. This new chemo will be just the thing my cancer needs to DIE and help prevent more obstructions with a better quality of life with minimal side effects. 

 3. For the kids as it is never easy having a mommy that is sick. 

 4. For strength and endurance for Wil as he carries a heavy burden when I am sick and not feeling well.

Another scan, another treatment plan change

 We had our CT scan in April which showed stable disease. Of course, we would rather see a decrease in tumors but at least there was no further growth of the tumors (around my intestines, bladder, and in my fat by my bellybutton). Carbo is one of the IV chemos that we originally started on back in August and we are unsure if it has been effective since I continued to have bowel obstructions even after being on that for months. It wasn’t until adding Doxil IV that my bowel obstructions slowed and were not as severe when I did have them. My platelets have been dropping lower and lower with each month of chemo, to the point where it could potentially be very dangerous. 

We made the choice to stop doing the Carbo infusions. This was also the chemo that I had to premedicate with a lot of steroids, Benadryl, and Pepcid. The infusion itself was an all day even with even more IV steroids. With it seeming to do more harm than good, it made sense to stop it and remain just on the Doxil. We will have another CT scan to check on progress next month. 

We did learn of two new drug options to keep in our arsenal if we need them. One is a hormone blocker but can take 8 months to see results with it. Another one is a targeted therapy that binds to this folate receptor on my tumors and pulls the chemo into it. This is a huge praise as these weren’t even treatments options a few years ago. Thankfully, there is continued progress in the treatment of ovarian cancer. 

The week after doing just the Doxil infusion, I was mostly just very fatigued. I was in bed a lot and sleeping. I had some nausea but was able to manage it mostly with just my anti nausea meds. I still got my Neulasta shot that week to help boost my bone marrow production to keep my counts from dropping so low. 

The following week, I was up all night with diarrhea, not uncommon for me with all my GI surgeries but it was on a whole other level. Then I was in bed all day Tuesday with abdominal cramping and nausea. I assumed that it was another bowel obstruction, especially after I started vomiting. We call oncology who wanted us to come in immediately. They even kept the office open late to see us and get me examined. 

My wonderful in-laws were able to get the kids and take care of them while Wil and I packed our bags assuming that I was about to be admitted again. On my exam, Dr. Skinner was able to hear my bowel sounds which meant it wasn’t an obstruction (with an obstruction, the intestines aren’t moving so they don’t make noise). With how my pain was presenting, Dr. Skinner thought it may be a gastric ulcer or pancreatitis. My heart rate was high (in the 130’s just sitting) which meant I was really dehydrated. We were admitted back to the oncology floor for fluids, IV pain meds, and IV anti-nausea medications. 

That same night, our son Wilson started having diarrhea and vomiting at his grandparents’ house. Then our older dog, Daisy, started having the squirts too. Ted and Connie are champs and took care of both of them. They tested me and I was positive for Rotovirus, which is a bad GI bug that has nausea, vomiting, and abdominal cramping. Thankfully it wasn’t anything more serious! Then Wil started saying that his stomach wasn’t feeling quite right… and the next morning, he started getting sick. I was going to be discharged that day, so for the first time in almost 11 years- I sent him home! My father-in-law came and picked me up when I was discharged. Then our puppy got sick the following day. We are unsure if Parker had it the week before or if she was just spared. 

This past Wednesday to Sunday, I was in Nashville with my boss, Dr. Summer, and Kristen, the PA an injector too. We attended a laser, dermatology, and aesthetic conference. We gleaned a lot of pearls and got lots of samples! 

As I am typing this, I am sitting in my chemo chair waiting to get my pre-meds. We have a lot going on this week so I am praying and hoping that this round doesn’t knock me down too much. Wilson’s last baseball game of the season is tonight and he has his kindergarten graduation Wednesday. 

We've had a lot of fun since the last post with our church's 5k, Easter, Wilson losing his first tooth, and Parker loving her taekwondo classes! 

Wilson ran with Wil the 5k in 34 minutes!

Prayer Requests: 

1. For the next CT to show either continued stable disease, or even better for a reduction in tumor size. 

2. For endurance and minimal fatigue this week so I feel up to being able to attend all of the fun things we have planned. 

3. Praise for new medications and more things in our arsenal to use if we need them!

4. Pray for overall endurance for our entire family as this takes a toll on everyone. 

Starting to take some trips again

We have been keeping on the same regimen for chemo, every 4 weeks. We did have to push chemo back one week a few months ago because my counts dropped and didn't recover. So now I get the Neulasta shot the Friday after chemo which boosts my bone marrow production. This does make my bones ache and hurt for a few days. 

I did have another bowel obstruction in February, had all my same symptoms of burping and belly pain. We were able to be seen in the clinic, check my labs (which were all good), and get some IV fluids. We were able to manage the obstruction from home using my Gtube to drain and being NPO (nothing to eat or drink). This allows my bowels to rest and unkink on their own. Everything opened back up within the next day and the best part was there was no hospital stay at all! 

The fact that we were able to manage an obstruction and avoid a hospital stay made Wil and I both more comfortable with starting to travel. My amazing boss, Dr. Leigh, took our whole office to Puerto Rico to a mansion with a private chef, bartender, and concierge! I packed half a suitcase with all the potential medical supplies that I never ended up needing to use. 

My Gtube site did get irritated and slightly infected, probably from trying to run the weeks prior. So I don't think it is in the cards for me to run anymore. Thankfully, Doc brought a round of antibiotics which oncology and GI agreed was good to start. It cleared it up within the week. 

We had an amazing and relaxing time. I'm so blessed to have my work family!

 One downside to the trip was I finally got COVID. Took me three years but it wasn't too bad. I managed not to give it to the rest of my family and I took Paxlovid, which made my mouth taste like a garbage can. In the midst of this, is when my lab counts drop. I had to do curbside lab draw since I had COVID so I couldn't use my port. 

My platelets were dangerously low at 28 on Thursday after my trip. Normal is 150-400. Platelets are what help your blood to clot. I had to go back the next day to ensure they were trending up and not continuing to plummet. They came up to 34 so I didn't have to get them checked until Monday. I was bruised like a peach but that's to be expected. By Monday, they were back up to 84! It is crazy how fast your body can rebound. 

We weren't going let this damper our next trip! I won a scholarship through the Dear Jack Foundation which we used to go to Great Wolf Lodge for the first time. This foundation was made from a band I listened to in high school and college called Jack's Mannequin. We got to go for Friday to Sunday with all the upgrades and packages! It was such a blast and such great memories. 

Wilson loved the bowling and mining experience best. Parker loved the wave pool and wore her wolf ears everywhere. They had fun using their wands to open chests and light things up. We had amazing family time and feel so blessed to spend that time together before our week of chemo this week. 

1. Praise: bowel obstruction resolved and no further issues. 

2. Praise: wonderful trips to Puerto Rico and Great Wolf Lodge

3. Pray for my counts not to drop after chemo this time. For the Neulasta shot to be effective especially for my White Blood Cell counts and platelets. 

4. For my next CT scan results on 4/24 to show decrease in all tumor activity for chemo #158 and #159 that week. 

Mixed Bag of Results

It's been awhile since I've posted and a lot has happened. We enjoyed our holidays and had chemo the week after Christmas which I tolerated well. 

I had my 3 month CT scan last week. It was a mixed bag of results. The good: the tumors around my intestines have gotten better. Plus, I haven't had any bowel obstructions or pain in that area. 

The unchanged: the tumors by my bladder have remained unchanged. No better, no worse. 

The bad: there are tumors on the outside of my muscle wall that have gotten bigger. These have less of a chance of causing an issue since it is just in my subcutaneous fat and not around my organs. Right now, we are just going to continue to monitor it. Surgical intervention is an option in the future if it starts causing me pain, which it isn't right now. 

The plan is to stay on my current chemo regimen. The new chemo (Doxil) has given me a rare side effect of darkening my skin. It is mainly on my hands, feet, underarms, and elbows. It doesn't hurt and my skin is intact, just another weird and rare side effect. 

My white blood cell count was too low to get treated this week. So my chemo was pushed out a week. I will be getting a shot (Neulasta) two days after chemo which boosts my bone marrow production to help stop my counts from dropping again. I've had this before and causes my bones and joints to feel achy and sore. 

We also may be a bit crazy but we decided to adopt a puppy! Since we lost Darla in August, we have been thinking about getting another dog and welcomed Sadie to our family a few weeks ago. We are still working on potty training. Our other dog, Daisy, has definitely perked up more and has been very playful with Sadie. 

Prayer Requests:

1. Praise no bowel obstructions since my Gtube was placed. Pray for continued protection from any obstructions. 

2. Pray for chemo regimen to work and shrink ALL tumors and no allergic reactions. 

3. Pray for protection against any infection as my immunity is low and for my counts to rebound by next week to be able to get chemo.