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.