Allergies Reaction, Obstruction, and Low Platelets, OH MY!!

Hold on tight, this is a long post as a lot has happened in the last three weeks! 

We had our first outpatient chemo on September 14 with our wonderful nurse Rebecca. Since I have to do the desensitization, I am a 1:1 ratio for patient:nurse. We were so happy to be back in the outpatient chemo room instead of having to be admitted to the main hospital. 

Here I was getting my baseline vital signs. 

The regimen was the same where I premedicated with Dexamethasone 8 mg (steroid) and Pepcid twice a day for two days before the infusion. Then I get IV medications before the chemo bags with 1/1000 of the chemo, 1/100 of the chemo, and 1/10 of the chemo. Then another round of IV medications before the remainder of the chemo. 

15 minutes into the FIRST bag of chemo, I started getting chest tightness, shortness of breath, and turned bright red and itched all over. The chemo was stopped, the emergency bell was rang, and all the nurses came running. Thankfully, I had amazing staff and Nurse Practitioner that handled everything quickly. I was given a different IV steroid (Solumedrol) and more IV Benadryl and placed on oxygen. My oxygen saturation was good but that was done out an abundance of caution. 

We waited until all the symptoms had resolved and Rebecca started my chemo back at a slower rate and I was able to complete the rest of the bag with no issue. 

Once the second bag of chemo was running, I started getting an itchy neck and hands. My face turned a bit red but nothing like the first reaction. So repeat the whole thing over: stop chemo, Solumedrol, Benadryl, wait for reaction to pass. 

We were able to finish the rest of my infusions without a problem: all the rates were slowed down and I had a lot more Benadryl and steriods on board. This also meant that we opened the chemo room at 7 am and didn't get out until 5:45 pm. So what better place to do my penguin face mask my best friend Susan gave me?? Of course this got some laughs. 

Wil and I have been praying for God sightings during these tough times of treatments. We were able to be there after hours when another patient came back needing help having severe nausea and vomiting after her IV iron infusion. We were able to pray for her and the staff and hopefully give her comfort. She was worried that she was the reason the staff had to stay late, so we were able to let her know they were already there for me! 

Since I had some pretty bad nausea for days after my first round of chemo, a medication was added for me to take after to help reduce the side effects, Zyprexa which is an antipsychotic... Weird, I know but it worked! It did absolutely knock me out where I slept so hard I straight peed the bed that night. Ah the joys of side effects that are so glamorous. I'm waiting for one of the side effects to be a six pack, thick hair, long eyelashes, something good! 

Fast forward to Sunday 9/25 at 12:30 am when I am awoken with a sharp pain right below my breast bone. I assumed it was acid reflux (which I am on prescription medicine twice daily) since I had burping too. I was up until about 4:30 am with the pain that wasn't relieved with Pepcid, Tums, and milk. But I powered through the pain because I was going to this awesome training by Shelby Miller and Galderma (an aesthetic drug company) in Charlotte with the doctor and PA I work with. 

The training was great but the symptoms persisted and we're beginning to worsen. Then it dawned on me and Wil at the same time that this could be another bowel obstruction. So I called my on-call nurse for oncology. I was given the option to try to wait it out at home or if the pain was bad enough, I needed to go to the ER. 

I got home around 3 pm, and we decided to go ahead and go to the Clemmons ER so wer weren't doing all this late at night. Wil's parents are amazing and came and got the kids after we packed all our bags for a possible 5-6 days stay. We let the registration lady know that I am on chemo and could have low immunity, they worked with us and let us sit separately from all the other sick patients. 

Here we are waiting in a back hall waiting to be triaged. 

Labs were drawn and X-rays of my belly were taken. Then I got a room pretty quickly. My portacath (permanent IV in my chest) was accessed, pain meds given, and a partial bowel obstruction was seen on the x-ray. For a better view, I had a CT scan which verified the partial bowel obstruction. This is occuring because the tumor is sticking and causing the bowels to kink off. This time, it wasn't all the way kinked which was the good news. Unfortunately, this is treated the same way with getting the tube down my nose that goes all the way into my stomach to drain my stomach fluid (NG tube) and I was put on NPO diet (meaning nothing by mouth). I started getting a nosebleed right before they put the tube down so I asked for Afrin which helps to close the blood vessels off- it worked and I had no bleeding after having the tube shoved down my nostril. 

Trying to stop my nosebleed 

My friend, Jennifer McBride, from my ICU days is the house manager and stopped by to see me and help me getting a bed at Forsyth Hospital. 

At about midnight, we got the news that I had a bed on 9th oncology floor. When the ER nurse called to give report, she said they responded with "Oh we know Katie!" 

So I get loaded into the critical care ambulance and Wil follows in our car after stopping to get my pillow from home. 

I spend the whole night so nauseated that I am continuing to throw up, around the tube despite the tube being hooked to suction to drain stomach contents. Finally, I get IV Phenergan (anti nausea medication) at about 5 am which finally works. I sleep for almost 12 hours (all day) but I had been up the last two nights and needed the rest. 

Our hospital room was a weird triangle shape so the only thing that fit for Wil to sleep in was a recliner, which didn't lay all the way down. He never complained and is such a wonderful caretaker. 

By Tuesday, we get the go ahead from my PA Emma and oncologist that we could clamp my NG tube and start clear liquids. It is SO HARD to try to swallow with the tube going down the back of your throat. 

When my oncologist came by that afternoon, I asked if we could pull the NG tube. We got the green light to get it out knowing that if I didn't tolerate the clear liquid diet, I would have to get it put back in. I was up for the challenge. I did make Dr. Skinner pull it out, I wanted it out ASAP and plus my surgeon (Dr. Stuart) pulled it out last time, so it was tradition! 

We did discuss it/when I get another bowel obstruction, we will have to consider getting a permanent drain in my stomach (G Tube- stands for gastric). This would be a valve that would be on my abdomen and allow me to drain my stomach without having to get the tube shoved down my nose. I could even try to manage the obstruction from home and only need to go to the ER for medication management if I needed. 

It is such a sweet relief to be able to swallow, clear your throat, and drink cold water! 

I was discharged Wednesday afternoon after I tolerated advancing my diet and did well with regular food for breakfast. 

The plan was still on to meet Dr. Skinner on Monday, 10/3, to go over the game plan and get labs for chemo on Wednesday, 10/4. Unfortunately, my platelets were only 81- they need to be over 100 for treatment. My premeds we're changed back to the old protocol to ensure no further allergic reaction. This increased the steroid from 8 mg twice a day to 20 mg every 6 hours (around the clock), adding Benadryl, and increasing the Pepcid to every 8 hours all for two days prior to treatment. 

Dr. Skinner gave us the option of stopping the premeds and holding chemo for a week to allow my body to produce more platelets or stay on the premeds and recheck my platelets Wednesday and try for chemo, knowing that if they aren't high enough, I would be sent home and have to wait a week anyway. My bone marrow doesn't work as well as the average Joe's due to all the chemo I have had over the last 10 years. We have to be really careful as platelets are essential for clotting your blood. Getting a platelet transfusion wouldn't help as it doesn't fix the underlying issue that I'm not producing any of my own. There is nothing I can do to increase platelets other than time to recover from chemo. 

Wil and I both wanted to at least try especially as my platelets last round increased from 105 on Monday to 258 by Wednesday. 

So here I am at 3 am, wide awake from taking my meds at 2 am, and with a gnarly headache to boot. 

Prayer Requests:

1. Praise my bowel obstruction was able to resolve on its own and resolved quicker than my previous obstructions. 

2. Pray for protection from bowel obstructions while we wait for chemo to shrink the tumors, so I can avoid getting the permanent stomach drain. 

3. Pray for my bone marrow to kick it into high gear and my platelets to be well over 100 Wednesday morning! 

4. Pray the change in premeds helps prevent any allergic reaction with the next chemo. 

5. Pray for wisdom, guidance, and protection for our kiddos as it isn't easy having to deal with all the effects of having a mommy with cancer. 

Back into fight mode- with a blindfold on

 Surgery was on July 26th but wasn’t what we were expecting. Wil and I had prepared for open abdominal surgery, to be admitted for about a week, and have a bowel resection. What I wasn’t expecting was waking up and being told by Wil over the phone in the recovery room was that they were only able to remove my gallbladder (just because of gallstones not cancer) and there was cancer on my intestines. We were discharged home that same day. 

Recovery was easier than expected since it was laparoscopic only, five small incision sites instead of a cut from my belly button to my underwear line. I only had to take Tylenol for pain management. Unfortunately, the night after surgery, our 14 year old dog Darla had a seizure. She had never had one before and had been acting completely normal up to this point. The next morning, we told the kiddos to say goodbye to Darla since she was really sick and was going to see the vet while they were at daycare. 

Later that morning, Wil and I took our old lady to see her vet. She took some blood work but prepared us for the worst, that usually seizures at this age are cancer related. Her blood work came back abnormal and it was recommended to do an ultrasound. We had to leave our girl there and headed back home. Still trying to recover from surgery was difficult with all this moving around, car drives, getting up and down on the floor to cuddle with our doggie. The vet called with the bad news, cancer in her spleen and heart failure, and the recommendation was to put her down. I adopted Darla right before I met Wil because I was new to the Winston area, was working nights, and needed company. She was a year and a half old and had been abused, adopted but only to be returned because “she was too much work.” 

Wil and I drove back to the vet to say goodbye to our sweet old lady. The vet had a doughnut to give her as a last treat. I looked like a hot mess as I hadn’t showered since surgery, we had tearful goodbyes. Thanked her for the years of bringing our family great joy and love. That was so hard to leave knowing she would never be coming back with us. 

Needless to say, this set back recovery a bit. Crying, car rides, up and down on the floor caused a bit more pain but I took two days doing nothing much other than laying on the couch and reading.

We met with Dr. Skinner on 8/1 to discuss surgery findings and come up with a treatment plan. She talked to me in the recovery room but I was still coming out of anesthesia. During surgery, she found cancer that was around my bladder (where I had to have tumors removed back in 2019), tiny spots on my intestines where my bowel obstructions had been, and granular type spots to my upper abdomen that have been stable since my last surgery. 

The recommendation was to start IV chemotherapy. Carboplatin was a definite and could also add another IV chemo, Doxyl. I had Carbo in 2012 and 2014, but had an allergic reaction to it and had to complete the rest of the treatments inpatient with desensitization. Basically, lots of steroids and sneaking the chemo in slowly to trick my body that it is okay to have! What was a slight curveball was that this treatment plan would be indefinite, as long as it is working and I tolerate it. Previously I had done six rounds only. 

Wil and I had already been praying about these options since Skinner already told us treatment options before surgery. We both agreed to just start with the Carbo and keep Doxyl in our arsenal if we need it. Our goal is to live life to the fullest and would start chemo after a beach trip and Wilson starting kindergarten. 

 We had a family vacation to Holden Beach with the Warren side planned for the following week. Wil and I figured we wouldn’t be able to go since we planned on the open abdominal surgery. That all changed and we were able to go! I was still on restrictions, no lifting more than 10 pounds and no submerging my abdomen. This was a great week, it is our happy place. By midweek, my restrictions were lifted and able to enjoy the pool and the ocean. 

Our amazing neighbors, the Mazzolas, watched our dog Daisy for the week. This was best for her since she had two other dogs to play with and was covered in love. 

The week after the beach, Wilson had his open house for kindergarten at Calvary Day School. This is the same school Wil attended 2nd - 8th grade and it was a big reunion for him. It was neat to see so many alumni kiddos attending. Wilson’s class and teachers were amazing. Their class pet is a turtle named Myrtle! 

They did a staggered start for kindergarten so Wilson’s first day was Thursday, 8/18, and went with half of his class. He said his favorite part was the playground and his second favorite was eating his packed lunch. He flunked car line pick up because he didn’t hear his name but he got the hang of it the following week. 

Since he was off Friday, our family plus my mom went to the new children’s museum in High Point. We all had an absolute blast. We stayed for five hours and still didn’t do everything there. 

Saturday, we  buried Darla’s ashes in our backyard with help from the kids. I think it was good for some closure for all of us. Then we got to have a pool date and dinner with our friends the Hemphill’s. 

Wilson went to school Monday 8/22 with his whole class. Parker has been a bit more emotional and clingy at drop off with her brother not at the same school. After drop off, Wil and I headed to the cancer center to get labs drawn, get some chemo teaching, and a quick meeting with Skinner. My pharmacist is a friend and a genius! Rachel walked us through the new protocol for desensitization. The chemo used to be mixed in 13 bags, which made for a loooong infusion day. Now it is mixed in 4 bags and a lot less premeds I had to take 48 hours leading up to the infusion. As long as I behaved (Wil said that was my only job), I could stay on the new protocol and be switched to outpatient for the remaining treatments. 

Now, how do we monitor if this chemo plan is working since the tumors that were seen in surgery couldn’t be visualized on the CT or PET scan? Skinner said we are fighting this a bit in the dark. Symptoms would be a big part since the bowel obstructions lead us to this point. Also, we added back in my blood marker level, CA 125. Most likely, we will do a CT scan every 3rd round to make sure that was can’t see disease progression. If we need to, laparoscopic surgery in the future could be an option to take a look. 

My CA125 was 40 before my first surgery, anything under 35 is considered normal. Since the first surgery, my level has been below 10. This one came back at 25. Mine is not very reactive but we can use this as a trend. 

After the trip to oncology, I went back to work for the first time since surgery for a 4 hour shift. I hit the ground running, but I was already taking high doses of oral steroids so I had all the energy I needed. They had a huge Welcome Back banner and lots of my favorite treats in the office for me. My boss and coworkers have been so amazing during all of this and so very helpful for my first days back. 

Since chemo check in was at 7:30 yesterday, the kids spent the night with Wil’s parents. We were able to video call them and say good morning on our way to the hospital. At registration, we had to wait for our room to finish being cleaned. We got up to our room at 8:15 am and met our nurse for the day, Sharon. Until the patient is checked in, pharmacy won’t start mixing any of the medications. I couldn’t get my premeds until the chemo was ready as you want them infused close together. 

Sharon accessed my port (my permanent IV in my chest) but I forgot to put my numbing cream on, so it was a bit ouchie… then we waited. And waited. Then I cleaned, as our room was NASTY. Dust covered every flat surface, prescription glasses under the bed, blood spots on the bed rail. Sharon offered for us to move rooms but that would just be a big hassle. The unit secretary took photos and took it to the “big man” to complain. 

Finally, my meds were ready and I started getting infused at 11:15 am. God has been teaching us patience throughout our whole cancer journey, so we just go with the flow. The first bag of chemo has 1/1000 of the chemo mixed in it, second bag is 1/100, third bag is 1/10. The final bag has the rest of the chemo. I did great the whole time with no reaction. So we got to leave around 6:15 that night and have the kids come home, which felt amazing to all be home together. 

Today, I just don’t have much of an appetite and a bit tired. Overall, handling it really well. Now we just to have to be on watch out for a delayed reaction which could happen 24-72 hours after the infusion. 

At church the last few weeks, the sermons were smacking me right between the eyeballs. The topics have been about contentment, why does God allow suffering, and how to live with less anxiety. Contentment doesn’t come from possessions or from circumstances. Contentment can only be found in God and seeking His daily presence. We live in a broken world due to humanity’s sin but it is temporary and will pass away (Romans 8:20-22 and Revelation 21:1-4). Good can come from sufferings as a Christian as we learn to depend on God’s power rather than our own abilities or strengths (2 Corinthians 4:7, 12:9-10). Commit anything causing to the Lord in prayer and trust Him (Psalm 37:5, 1 Peter 5:6-7, Psalm 55:22). 

Prayer Requests:

1. Huge praise for making it through the initial infusion without any reaction. Pray for no delayed reaction for 24-72 hours so we can continue on the 4 bag, outpatient protocol for the rest of treatments. 

2. Pray for the kids, Wilson and Parker, as there have been a lot of changes to adapt to lately (Darla dying, Wilson going to kindergarten, Mommy back in treatment). For us to have patience and wisdom for God in how to best help with these transitions. 

3. For Wil, my most favorite caretaker, as he shoulders a heavier burden while I’m recovering from chemo. For him to have strength and endurance for the road ahead. 

Time for Surgery #4

I had my PET scan which didn't show any overtly cancerous spots. There are a couple of nodules that didn't light up like my cancer normally has. It did show that my intestines were still inflamed despite it being three weeks since I had been discharged from the latest bowel obstruction. 

So the plan is to have surgery on 7/26 with my oncologist, Dr. Skinner, and my general surgeon, Dr. Stuart. They will try to go in laproscopic in my upper abdomen first. If they are unable to get to my lower abdomen with the scope, they will have to open me up like my previous surgeries. I will have another bowel resection and take down of adhesions. The rest will have to be decided when they get in there and are able to visualize more. 

The risk for having to have a temporary or permanent colostomy or illeostomy increases with this being my third bowel resection. That is where they would have to divert my GI tract through a hole in my abdomen where a bag catches the stool. 

Again, my work family and boss have been simply amazing and supportive during this entire process. God placed me here for the perfect time. 

Recovery time will depend on if they are able to perform the whole surgery laproscopic or open abdominal. The likelihood of being able to get the scope to my lower abdomen is slim, as Skinner said - the miracle of miracles surgery. Worst case, in the hospital for 5-7 days with 6-8 weeks out of work. 

Adoption Unleases Purpose

Prayer requests:

1. For the God of miracles to allow this surgery to be the least invasive as possible. 

2. To keep me healthy until surgery (COVID cases are rampant). 

3. For peace for the pain of recovery (really not looking forward to it). 

4. For wisdom and guidance for my whole our medical team. 

5. For strength for Wil as my caretaker and shouldering a heavy burden during my recovery. 

6. For God to use us to be able to help someone else and point others to Him. 

Same God in the hills and the valleys

 First of all, thank you all for the prayers of the past week. We have wonderful God, family, friends, medical team, and support system that makes tough days manageable. 

Now to give you all the back story of the latest medical journey. It all started last Wednesday night (6/1). I had the day off of work and was uber productive. We had Parker's birthday party cookout planned for the weekend and I wanted to have everything ready. 

While putting the kids to bed, I started having upper belly pain, cramping, and painful burping. I thought maybe it was just from something I had eaten and it would pass. Unfortunately, the pain was just getting more intense. Thankfully, Wil's parents (Ted and Connie) live down the road from us and were able to come over and get the kids and dogs before everyone fell asleep. 

Wil and I packed our bags in case this would end up in a hospital stay and wouldn't have to be in a bind like the last admission of not having what we wanted and needed. It was hard to say goodbye to the kids not knowing when we would see them next. We had the reassurance they were in good hands and would be well taken care of. 

We head over to the main hospital (Forsyth Medical Center) to be evaluated in the emergency room. It was a MAD HOUSE, I mean standing room only in the waiting room. My pain at this point is getting worse and I'm thinking we won't be evaluated or medicated for hours. We sign in and sit down to wait to be triaged. One lady said her son had been here since 1 pm and it was almost 9:30 pm and still hadn't been to a room. He had tests run and needed discharge papers but was still waiting. 

We go back for triage and my blood pressure is 180's/110's, just due to the pain. We are back out to the waiting room. After Ted driving to the Clemmons ER and poking his head around, we decide to leave Forsyth ER and head over to Clemmons in an attempt to be seen sooner. There were 48 patients waiting at this point and didn't seem like it was a good use of time to just sit. 

Clemmons ER was a night and day difference. Was triaged by one of the first amazing nurses (Michelle M.) and had several tests ordered. I had labs drawn and an x-ray of my belly. I was first on the list for the next open room. Michelle brought us back, hooked my port up like a pro, and went back for a CT Scan. Our ER physician was great as well. He needed to rule out anything with my gallbladder so that was ultrasounded as well. I have known gallstones but needed to make sure that they weren't blocking anything or could be the cause of the pain. 

Then we get the CT results... it is another obstruction. "Findings consistent with small bowel obstruction with multiple dilated loops of proximal small bowel and collapsed distal small bowel." There was also some bowel wall thickening that had increased since the last obstruction in April. We have to be admitted to Forsyth and get that nasogastric (NG) tube down to suck the contents of my stomach out to let my bowels rest. Thankfully, Michelle is a super nurse and got the tube down. 

1st NG tube in the ER

I was given pain meds and anti-nausea meds and was able to sleep some during the night. My superman of a husband got to try to sleep in a straight back chair, resting his head on my stretcher rails. Mind you, not complaining a bit. He truly is a saint! 

After a night in the ER, we had to wait for Critical Care Transport to take me to Forsyth when my room was ready. Despite having the NG tube to suction, I still was throwing up around the tube. Probably one of the worst parts of having the tube and the obstruction. Makes your throat burn, chunks get stuck around the tube, and you are heaving with a garden hose down your nose. In the flails of wretching, I hear a familiar voice and a cold towel on my neck. One of my transport nurses was Jessica who I used to work with in ICU many years ago!

Wil wasn't able to go with my in the ambulance but it was a quick 15 minute ride. Unfortunately, it felt like much longer because I was still so nauseated and gagging a lot. Once I got up to my room on the 9th oncology floor, my nurse came to assess me and hook my NG tube back to suction. Something didn't feel right and sure enough, I had heaved so much and so hard that the NG tube had come out and was just sitting inside of my nose. So I got to have ANOTHER NG tube shoved down my nose to my stomach. 

1st tube out, waiting for the 2nd

2nd NG tube back in place

The plan was close to the same as the last obstruction. We needed to rest my bowels for a few days. I was also put on IV steriods to help with the inflammation that was seen on the scan. I had IV meds for pain and for nausea which I mainly slept for the first several days. With that tube in your throat, it is uncomfortable to talk, swallow, move, just exist. 

Our room did have an amazing view and we were able to see God's gorgeous sunsets each night. Wil and I took many walks around the floor and even did a puzzle one day. He is convinced they were chihuahuas but they were foxes. 

1st real food in 5 days

Finished puzzle!

Dr. Skinner (oncologist) and Dr. Stuart (surgeon) colloborated on a game plan. We were going to do the same imaging on Sunday (6/5) to see if my bowels were moving. They inject contrast down the NG tube (which made me dry heave) and take x-rays to watch it move through. If the blockage was still there, then that meant I may have to have surgery then to open it up. Well I aced that test and it was already in my colon within an hour! 

Dr. Stuart came by and said I could get my NG tube out. So I'm holding it out to him and he thought I was crazy when I wanted him to do it then. He told me that I was a nurse and could do it, Wil tried to jump up and wanted to give it a whirl. But Dr. Stuart pulled it for me and it is instant relief. I was able to start on clear liquids slowly and make sure I tolerated it well. 

Now the hard part, what's next?? What is causing this to keep happening? How to do we prevent it from ocurring again? 

The first step is to get a PET scan in 1-2 weeks. A PET scan lights up any cells that use a lot of glucose like cancer. 

The results will determine which route we consider. It if is cancer/tumor growth that is causing the obstruction, then we will go back on IV chemotherapy. The one that Dr. Skinner is leaning towards is Carboplatin. I had this for my first two bouts of cancer. It is the one that I had a reaction to and had to complete my infusions as inpatient to sneak it in without my body reacting to it. It comes with a lot of steriods, IV and oral, and is just time consuming. 

If it is NOT tumor related then we would consider surgery. The option was to wait to do surgery until another obstruction happens or to do it electively to prevent just waiting for trouble to come. We would try to do laproscopic but may have to change to an open abdominal surgery since this would be my 4th surgery. The more you mess around in the belly, the more I make adhesions which is scar tissue and hard to move around laproscopically. This would allow Skinner and Stuart to remove the affected small bowel that keeps getting obstructed and remove any ahesions. 

We were discharged home yesterdy (6/7) which was a huge praise. We got to pick the kids up from daycare which just made me cry happy tears. It was such a sweet time to be able to celebrate Parker's 3rd birthday and be reunited as a family. 

For the THANK YOUs- as there are a lot!

1. Thank you to our God in heaven who provides for each of our needs. To grant us the ability to use this cancer journey to help others, deepen our faith, and to teach our kids about trusting in God's plans. 

2. To my co-survivor, my favorite caretaker, and my husband. Thank you for the sleepless nights, never complaining about the food, coffee, lack of bed, boredom as I'm passed out. For being what I need, when I need it. 

3. To our wonderful medical providers: Dr. Skinner, Emma (our PA), Dr. Stuart. To our nurses who went above and beyond- especially Michelle M at Clemmons ER & Ashlyn and Danielle on 9th West.  Mahogany from Surgical Services who was a unit secretary who lit up the room and always had a smile on her face. 

4. To Ted and Connie for caring for our kids and dogs- and even having to de-stink Daisy after getting sprayed in the face by a skunk our first night away. 

5. For the friends and family who brought snacks to the hospital for Wil, decorated our house for Parker's birthday, brought us parking passes, and took care of us in tangible ways. 

6. To my work family: thank you for being so amazing and caring for me despite only knowing me for a few short months. You all are wonderful and I am blessed to be part of Lewisville Laser! 

For the prayer requests:

1. That my bowels stay unkinked and behave while we await the PET scan. 

2. For wisdom and guidance for deciding on a treatment plan. 

3. For my body to rest, gain strength, and prepare for the next leg of this journey. 

I write this blog so that God can use my story to help others. This is in no way a means to gain attention for myself, to show how "strong" I am, because I am not. This is not for pity but to show you the strength of a God who cares for my every need. That you can see him working in the valleys and because of Jesus' perfect sacrifice for me, I don't fear evil! I know that Christ has already overcome it and has the victory. That doesn't mean that I don't struggle. There were days in the hospital that I couldn't even pray because I would just start to cry, which would irritate my tube. But I know that the Holy Spirit intercessed for me when my groanings were too much for words. 

I hope that when you see me, you see how big my God is. 

Not what we expected

As I type this, I am finally back at home, in my own bed. This wild ride started a couple of weeks ago when I traveled solo up to Pennsylvania to say goodbye to my Grammy before she passed. 

I was able to be there for a full day in her hospital room, and spend time with my aunts and uncle. After Grammy passed on a Saturday night, I decided to go ahead and hit the road home. I spent the night in West Virginia to help break up the trip. On my drive home, I was having some bad gas pain. I thought it was just from eating junk food and traveling. 

The following weekend was Grammy's funeral service. This time my dad, husband, and kiddos all get to pile in the Swaggerwagon (aka my minivan) and we make the 8 hour trip back up to Pennsylvania. I'm still having some gas pains and little appetite but still thinking it is just from traveling. 

We got to spend a lot of time with my cousins who we don't get to see often at all. I met my dad's Aunt Ruthie who took care of dad when he was a baby. She lovingly calls him Chuckie and said he was her very own baby doll. 

The funeral service went well but I was still having belly pain and now nausea. After the service, there was a big meal at a restaurant but I felt so bad that I bailed on Wil and just laid down in the back of the van. We went back to to hotel and let the kids play in the pool some more and I'm popping GasX and antinausea pills like they are going out of style. 

We got the kids down to sleep, all sharing the same hotel room, but I just couldn't get comfortable. Wil, with all his wisdom, said we needed to go ahead and head to the ER. My stubborn butt said "Ah nooooo it's just gas. I'll be fine." 

My husband is a saint with patience to deal with my stubbornness. I called my oncology on-call service and was directed to, can you guess it??, head to the ER... So at 10 pm, my dad comes down to spend the night with the kiddos so we can make it to the hospital which is about 30 minutes away. At this point, I'm in excruciating pain. 

We get checked into the hospital and get taken back pretty quickly to a room. I'm told they can't access my port (my permanent IV) because only a special team can do it. Our nurse was amazing and got me an IV in my forearm and got me pain meds. After an exam and a CT, I was diagnosed with colitis (inflamed bowel). The doctors thought it was from a bacterial infection so I got a dose of IV antibiotics. They wanted to keep me overnight for observation (it was around 3 am at this point) and Wil and I just wanted to get back to the hotel. 

The best part of this story was that Wil was waiting outside the bathroom while I tried to give a urine sample (both of us sleep deprived). And a nurse comes down the hall, looks directly at him and says, "Wil, I need you to be second on a trauma, 5 minutes out." Being the southern gentleman that he is, Wil just nods and says "Yes ma'am." Poor guy was trying to figure out how to Google what to do in five minutes. Then quickly realizes the nurse behind him was also named Will. 

So we made it to the hotel at 4 am, got a few hours of sleep and waited for the CVS to open to pick up my meds. We still had 8 hours of travel to make it home. Wil was such a trooper and did all the driving and my dad say in the back with the kids and entertained them. I was just comatose in the front seat walking up for bathroom breaks only. 

I had ten days of antibiotics that I completed this past Tuesday. Wednesday morning, I woke up at 5 am with sharp upper abdominal pain. The pains before were in my lower abdomin. I messaged my GI doctor and oncologist. Dr. Skinner messaged me back and said I needed to be seen. One of the PAs, Emma, called me at 8 am just after we were dropping the kids off at daycare. She told me I needed to be seen at the Forsyth ER in case I needed to be admitted. 

Wil and I head onto to the emergency room and get placed in a room and see a doctor pretty quickly. He ordered antinausea meds, pain meds, and a CT scan. The rest of the day dragggggs on. My nurse didn't feel comfortable accessing a port, so we had to wait for another nurse to come access me. 

Finally things get moving with meds, labs, and the CT scan. The scan showed  "Suspect high-grade small bowel obstruction in the right abdomen adjacent to prior resected bowel along the suture line." The emergency room doctor came in and said that this was going to be a surgical intervention, we were devastated.

Then, the great news came from Dr. Skinner and her team that I would NOT need surgery, that we were going to try bowel rest first. It didn't take surgery off the table, if things worsened but it wasn't our first step. I would need a Nasogastric tube (NG tube) to drain my stomach fluids then nothing to eat or drink. The hope would be that my bowels would unkink on their own after a few days. 

Dr. Skinner happen to come to the ER room to visit right when the NG tube was about to be placed, so her and Wil got to witness that lovely event. Going off of how it felt alone, it was a garden hose being shoved through my fragile nose gagging me all they way in. Because I'm prone to nosebleeds, I got one of those as well. I had the NG tube in for almost 12 hours and despite it being in the stomach, it wasn't draining anything. 

We were admitted to the oncology floor and the night shift nurses advanced it further. During that, I was throwing up around the tube. But finally, the tube was suctioning all my stomach contents. 

I always thought that once the NG tube was in, you wouldn't feel it anymore. That is NOT the case. It sometimes would make me gag, like if your toothbrush gets you in the back of the throat. You can't swallow easily around it. Nose breathing is difficult because it jostles the tube around. So I was just miserable, I was able to get IV antinausea meds that knocked me out and I tried to just sleep it off. 

I had another test done to make sure this wasn't my gallbladder acting up which was ruled out. During this time, I wasn't passing gas or having any bowel movements. Then finally, I FARTED !  Strange to say when you are praying for gas to move but God answered our prayers. This reminded Wil and I of one of our favorite nurses, Mama Sharon. She was one of our night nurses after my very first cancer surgery who threw us a "farty party" in the middle of the night when I finally pooted after having my first bowel resection. 

I was admitted Wednesday and by Friday it was time to test my bowels again! Radioactive fluid was injected into my NG tube and then I got a series of X-rays to see it flowing through my GI tract. This would show if the blockage was still there or if the dye was able to pass through into my large intestine. This process took about four hours to keep getting all the X-rays at the correct time. I kept refreshing my phone from 1:30 pm when the last x-ray was to get the report. If it showed no blockage, I could get the tube out of my nose. To say I was cranky was an understatement.

Dr. Skinner, out of town at the time, still called to check in on me. She worked her magic with her PA. Emma to get my report read which did show no further blockage. So at 5:00 p.m, I was able to get my tube out. 

Wil said it looked like she was starting a lawnmower, nurse's hand on my forehead and pull the cord ! It was over two feet of plastic tubing getting yanked out of my stomach through my nostril. But that first sip of ice water was pure delight. I could swallow, I could blow my nose, I could clear my throat! What simple pleasures we take for granted. 

I was started on a clear liquid diet and did well with no nausea or pain, so was advanced to full liquid. Doing well with all of that, I got a soft GI diet (no fruits or veggies) and had breakfast. Doing well with that and after Dr. Skinner's partner, Dr. Wallace, examined me, we got to be discharged! Wil and I were ecstatic. We were able to go home before Easter Sunday.

I've been reading a book by Joni Eareckson Tada "A Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty." I had read before this hospital stay that God commanded us to give thanks in all circumstances, not be thankful. That the more you give thanks, it changes your attitude and mindset and transforms you.

 I did not do well with this in the hospital with an annoying tube in my throat, but I tried. I gave thanks for a loving and support husband who never complained about sleeping in a recliner or having nasty hospital food, eaten by himself since I couldn't eat. I gave thanks for wonderful in-laws who were watching our kids and dogs . I gave thanks that I had my port, so I didn't have to be gentle with a peripheral IV.  I gave thanks that I have full use of my arms and legs to reposition myself. I gave thanks for wonderful medical staff and oncologist who provided great care for me. I gave thanks for a work family who love and support me and take care of me (go see Lewisville Laser & Aesthetics!). I gave thanks for friends who tried to distract me while I waited in the ER and shopped via text while hopped up on IV drugs and don't remember it until a purse shows up to my house (love you Maegan). 

It felt amazing to see our kiddos and sleep in our own bed. I felt good enough to be able to go to church and celebrate the reason we can have joy in suffering, that my Lord conquered death and sin and I will have a renewed body one day. I will be free from cancer, free from pain, and basking in the glory of God. 

Prayer Requests :

1. For protection for my guts from another obstruction. 

2. For wisdom and guidance for my future cancer treatments as we may have to stop my infusions for safety. 

3. Praise for healing and not needing surgical intervention. 

Faith Over Fear

 When we start looking into the future and try to rely on our own provisions, fear starts to take hold. I don't know what the future holds but I have an amazing God who does. He has promised me that he will give me what I need for each step of this journey. God has proven his love and provision time and time again over the last 9.5 years of this cancer journey. 

We have had to change our mindsets as we have transitioned into this maintenance phase of treatment. Over the last 1.5 years, we have been tied to my cancer markers, scans, and exams. Dr. Skinner has told us that we need a break and to enjoy life and try not to focus on the numbers as much. That is easier said than done sometimes. We are going to focus on whether or not I have symptoms, physical exams, and scans (that will be less frequent than when in active chemo). My cancer marker- CA125- keeps slowing raising but we are just monitoring it for now. 

The way my cancer works, as it is low-grade, is that is grows slowly. It is treated more like a chronic illness than the high-grade, or fast growing, cancers. I will always have to deal with this thorn in my side and be in and out of active treatment depending on what the tumors are doing. Right now, we are focusing on giving my body a break from the hard-core chemotherapy and enjoying life. 

My maintenance infusions having been going very well with minimal side effects. I have treatment once every 3 weeks. Wil is still able to go to my treatments with me which is a huge praise. I still get two premedications- oral Tylenol and IV Benadryl. I usually sleep a lot that day of the infusion and am a bit more tired for the rest of the week, but that is it as far as symptoms go. 

Now onto managing my GI issues... God had made our bodies so perfectly and when we start whacking away at it, it doesn't work as well as it once did. I've had three abdominal surgeries and two of them on my bowels. Since my last surgery, I've been dealing with what my friend Mae calls the "cha-chas." I have to eat like a toddler otherwise (and still happens regardless) I have diarrhea. I can't eat high fiber, whole wheat, most fruits and veggies, spicy food, beef, or pork. So like I said, chicken nuggets and french fries, just like a kiddo. This does get frustrating when I crave a salad, a crisp apple, steak, etc. My GI doctor does want to do a colonoscopy but this has to be timed right with my IV infusions since those can cause bleeding issues. 

For an update on our family since I last posted: We had an amazing Christmas and New Year's. We have all enjoyed the snow and sledding. Parker prefers to be pulled around in what Wil called her chariot, instead of having to walk or stand in the snow herself. 

Wilson started playing basketball at the local YMCA and Wil is the assistant coach. It has been fun for the whole family!

        

I also started a new job. I have an amazing colleagues, boss, and clinic! I am enjoying learning new services and techniques. It was hard to leave a job that I've been in for over 8 years but I am so glad that we did. Wil and I prayed long and hard and God fully answered our prayers with this position! 

Prayer Requests:

1. For effectiveness of my infusions and for many years of health ahead of us. 

2. For management and control of my GI issues. 

3. Praise for a wonderful new job and work family. 

4. Praise that our family was protected from COVID and Wilson's case resolved quickly and without symptoms.