Tube free!

We met with international radiology at the beginning of February to see what the process of removing my Gtube would be. My biggest concern was if we removed it, would I be able to get another one placed if I start having bowel instructions again. The good news is that my stomach has already been moved into place and putting another Gtube in would actually be easier. 

On Leap Day, we celebrated getting my Gtube out. This was an outpatient procedure and the PA told me they would silver nitrate the rest of my granuloma, and recommended that I use the numbing cream that I used from work for prior silver nitrates because they don't numb at all. 

I've started a program to try to run a 5k in May at our church. So Wil and I went to the gym and began the day running (Wil much further than I). Then I had acupuncture before the afternoon of getting my tube pulled. 

For some reason I was more nervous about this procedure than some of my other surgeries, I guess the unknown is always scarier. So I took some Xanax that I had to help calm my nerves, and boy did it calm me down.

The g-tube was only held in by a plastic dome, and if you pull on it with enough pressure it just comes out. So when they started pulling I felt like I was being levitated off of the table, but it came out. It was uncomfortable in the silver nitrate hurt more because of how far down they did they chemical burn. 

There is the table after the procedure. My Xanax hit me all at once and I don't remember much of the afternoon. We visited my friend in the hospital. On the way home, I insisted that Wil stop and get me every flavor of Sweet Tart rope he could find. Where I then saw someone from church while I was waiting in the car, of which I don't remember much either. 

I had chemo the next Monday which went well. My neuropathy started acting up again and so Debby my symptom management NP, increased my Lyrica to three times a day. It was also time for another CT Scan. Since I'm now allergic to the IV dye, I have to premedicate with Benadryl and Prednisone. 

The following week was Wilson's spring break. We were able to do lots of fun things, High Point children's museum, fishing and mountain bike riding with Wil, and just playing around the house. 

Last Saturday, the boys ran in the St. Leo's 5k. Wilson won first in his age group, 30:21, he ran without stopping! Then Wil ran the 10k right after and he won 3rd in his age group! 

We met yesterday with Dr. Skinner to get the CT results and for chemo. Praise report that the CT scan results continue to show that tumors are getting smaller. One area on the outside of my abdomen near belly button is more consolidated and distinct which is something they will just keep an eye on and if it doesn't respond to treatment may consider surgery to remove. GTube site is still healing, doc put some more silver nitrate on it which makes it pretty sore now. 

My blood marker, CA125, came down again, which is in line with what the CT scan showed. I'm recovering this week

Prayer Requests: 

1. Praise for chemo continuing to work and decrease tumors. 

2. Pray for protection from neuropathy pain and for healing from Gtube site. 

3. Pray for bellybutton tumor to not cause any issues and stop growing and not need surgical removal. 

4. Pray for endurance for me and my family during this grueling, every 3 week treatment cycle. 

ADDENDUM: As I was getting ready to post this blog update, I was admitted to the hospital for an infection around my tube site. It got super red, hard, and painful after getting the silver nitrate done. Was getting IV antibiotics but started having an allergic reaction to it this morning. Those are on hold until we get the CT scan results. The scan is to determine the depth of infection to see what the plan of treatment will be; could be just draining it bedside and oral antibiotics. These results will also dictate how long I need to be in the hospital. 

Thankfully, my in-laws are able to help with the kids so Wil slept with me at the hospital. 

Please pray for quick healing of the infection and to get home soon. 

Lyrica, Ritalin, Oxy Oh My!

Another 3 months have past and time for another blog update. 

Since my last post, I have continued to have the chemo Elahere every three weeks with a scan at the end of December. 

Praise the Lord, the CT scan showed a reduction in all of my tumors. My cancer marker continues to decrease as well, all pointing that this chemo is working! 

I continue to see my Symptom Management NP Deby who is amazing. Gabapentin wasn't working for my neuropathy pain and Lyrica at the increased dose leaves me with no pain at all. I still deal with tingling and numbness which is manageable. I rarely have to take my oxycodone for it now. 

She also put me on Ritalin to help manage my chemo related fatigue a couple of weeks ago. I take it twice a day and it just makes me feel normal again. The week after starting it was the best I have felt since I started having bowel obstructions almost two years ago. I don't take the Ritalin right after chemo since it decreases my appetite and it is also dampened by chemo. 

We were able to have a wonderful Christmas since I didn't have chemo until two days after. Wilson asked Santa for a Tarsier (a small primate found in Asia), a megalodon tooth, and a Zipline. He got two out of three. Parker asked for a toy pony. 

 Wilson is in the middle of his basketball season and he has the same wonderful coaches as last year, Sierra and Kit. He has had quite the large cheering sections most games! 

Parker is taking swim lessons and is loving it. She will be doing Quickball in the spring while Wilson does baseball. 

We also got to celebrate both of our dogs' adoption days. Of course, they got a whipped cream treat! 

I have also started an exercise program for cancer patients. We meet twice a week doing cardio and strength training. Since I have the Ritalin, I've had the energy to work out in the first time in more than 6 months. 

My Gtube still causes me issues. The granuloma that keeps forming around it causes pain, bleeds, and oozes. We have used silver nitrate on it three or four times and it knocks it back for a few weeks but keeps coming back. I haven't had to use it (meaning empty my stomach because I have a bowel obstruction) since July. That in and of itself is a huge praise. We are meeting with Interventional Radiology (the ones who placed it) to see what the process is to remove it and recovery, if they would be able to place another one if we needed. The downside to taking it out would be having to go through the agony of getting a tube shoved down my nose and into my stomach if I get an obstruction again. Having the tube down your nose for a week is no cake walk either. It hurts and makes it hard to talk since it wiggles the tube. 

Prayer requests: 

1. Huge praises for the chemo working and meditations working to manage the side effects giving me a better quality of life. 

2. For guidance for Wil and I and our medical team as we decide whether or not to remove my Gtube. 

3. For protection from further neuropathy damage (which can lead to walking and hand issues) and continued protection for my eyes (these are doing good so far). 

4. For our kids to be able to use our family's cancer journey to help others and their own spiritual lives. 

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.