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. 

Moving into Maintenance!

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

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

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

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

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

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

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

Prayer Requests:

1. Praise for good CT results!

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

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

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

Starting Round 8

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

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

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

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

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

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

Prayer requests:

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

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

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

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

Walk by faith, not by sight

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

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

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

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

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

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

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

Prayer requests as we continue treatments:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Prayer requests:

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

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

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

4 months under my belt

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

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

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

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

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

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

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

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

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

Prayer Requests: 

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

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

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