One in million

 First of all, sorry that I have been slacking on keeping everyone updated! It has been a busy time with family, work, and the holidays. 

Since taking the oral chemo we have experienced some bumps in the road. My first Echo (ultrasound of my heart) shows my heart structures were all good but my heart rate was really low. Normal is 60-100 and mine at the time of the exam was 42. Looking back at my Garmin watch, my heart rate was dropping in the upper 30's and low 40's. 

My oncologist, Dr. Skinner, had me stop the medication for a week. My pharmacist and whole team did a lot of research and I was able to reach out to Johns Hopkins as well. Dr. Armstrong at JH only had one patient that had this same issue but was only after being on the medication for 2 years. She agreed with Dr. Skinner's plan to go back on the oral chemo at a lower dose then do a heart monitor to make sure that my heart rate was safe. 

My heart rate has been stable since decreasing the dose. THEN, I started having issues with my mouth. It was super painful, cracked and bled, and had ulcers on it. It was so bad that it was keeping me from sleeping and making it difficult to eat and drink. So I had to come off of it for another week to let my tongue have a break. I still have an ulcer on my tongue and am trying another medicated mouthwash to see if that can help as well (I've tried 2 others already). 

Since posting, my cancer markers went up and then back down. We will be doing more labs and another CT scan on 2/3 then seeing Dr. Skinner on 2/8 to go over the results. 

Here are some specific prayer requests: 

1. Praise that my heart rate is stable on the lower dose. 

2. Pray for my tongue to heal and the new mouthwash to help heal the current ulcer. 

3. Pray that my cancer markers decrease and CT scan shows evidence of disease regression. 

4. Pray for peace in the waiting and in God's timing for all things. 

One month down

One month of my oral chemo has gone pretty well. When I started it, I had nausea that I had to take frequent medication to control. The last week or so it has gotten a lot better and I'm only having to take the medication as little as once a day. Yesterday I didn't need any at all! 

I still have GI issues but a lot of it is finding the right balance of all of my medications. I started having the skin manifestations. It looks like white heads all around my nose and chin and is painful. My younger sisters sent me skin care products that are helping. I saw my dermatologist that started an antibiotic ointment too. 

The last symptom I'm dealing with is the dry skin. Wearing gloves at work and sanitizing and washing my hands frequently make it worse. I am getting cracks which are painful and burn. 

I kept telling Wil that I've had worse and that is true. Traditional chemo was SO MUCH worse. The nausea was a lot worse, there was fatigue, and it affected my immune system. This oral chemo doesn't affect my white blood cell count which is very important during a pandemic! 

Wil and I took our trip up to Baltimore to be seen at Johns Hopkins. We can look back and laugh at it now but it felt like almost everything went wrong with the logistics. 

To start, we got a rental car and had to drive to the airport (40 mins away) to pick it up. When we were almost there, I realized I didn't pack my chemo. Well, that can't happen so we were going to have to backtrack and waste over an hour to get it. 

Then the airport was having construction which was difficult to figure out how to get to the rental car place and parking deck. The first car we got in reeked of cigarettes, so had to walk all the way back into the airport to get another car. We did get a BMW which was a sweet ride. 

We had a hotel at the inner harbor. I was able to go out to dinner with my work friend, Lindsay, who I hadn't seen since Parker was born. It was great to catch up with her! 

The next morning, Wil and I walked around the inner harbor before our appointment at Johns Hopkins. We made our way to the hospital, which was HUGE. Overall, it was a good visit. The resident told us that I had the most records sent over that she had ever seen. I told her I accumulated at lot over the last 8 years. 

The news we received was that they agreed with the current oral chemo treatment and had other patients have great quality of life on it. The doctor recommended only doing one chemo at a time. Her recommendation was to give this oral chemo 9-12 weeks and rescan. If the tumor is stable or shrinks, then it is a good treatment and to continue. If the spots grow, then time to consider other options of therapy. We are also now an established patient, so in the future we can send a MyChart message to get a second opinion or see if I qualify for a trial drug. 

We celebrated with a seafood lunch . I wanted crab too but the taste made my nausea act up. Wil had no problem finishing off the crab soup and crab cake by himself. He made it disappear so quickly!

We took a slight detour and walked around DC before we went to my Uncle Mike's and Jean's for the night . We both had a lot of fun and need to come back soon. We only got one picture with Uncle Mike and Jean, and it was of their sweet dog Nugget! 

We might've felt like logistics were going wrong, but it was totally God's timing at work that we couldn't see in the moment - the last stop before turning in the rental car was at a rest area where I ended up doing CPR on a heroin overdose.  It had been almost a decade since the last time I had done CPR but my training kicked right in and all we know is God used us to help that man out and we pray he is doing much better now.  

Our prayer requests:

1. Prayers for this chemo to be effective and show no signs of disease on the follow up scan. 

2. Praise the nausea is under better control as well as the skin issues. 

3. Prayers for me to be protected from the rare but severe side effects to the current chemo. 

Thank you again for all my prayer warriors! We serve a big God who can do big things. 

Down the Hatch

 Last week was an amazing vacation with the Riegels prior to starting my chemo. We went to Holden Beach for the whole week with my parents, my sisters and their families. We were missing my brother-in-law Hunter (Uncle G as he is known to our kids) but we thank him for his service to our country!

I had my ECHO done on Monday at Forsyth Medical Center. This is just an ultrasound of my heart to check the structures and the pumping function of my heart. One of the rare, but serious side effects of my new oral chemo can cause issues in this arena, so I will have an ECHO every 3 months to monitor. The last piece of the puzzle was my eye exam. Another rare but serious side effect is blurred vision. My eye doc, Dr. Jillian Okeefe at C Distinctive Eyewear, was kind enough to squeeze me in. I've known her for many years at this point and would hate to have to see anyone else. I will see her every 3 months as well to monitor my vision. 

My chemo drug has to be refrigerated so we have its own shelf to keep it away from regular food and drink. Thankfully, it is a small pill that only has to be taken once a day. I take it at night and it needs to be taken on an empty stomach, so no more late night snacking. Thankfully, my oncology pharmacist is one of my friends and goes to my church, God plans all things! 

I took my first dose tonight. I will have labs and an exam in 4 weeks, then a CT scan in 9 weeks to monitor the progress. 

After the Novant Health piece, Spectrum News reached out and wanted to do a story and so did a Charlotte news team. God opened doors not only to give Him the glory in my cancer journey but also to spread awareness of GYN cancers. So stay tuned for the stories!

 Thank to to all who "adopted" a flamingo in my honor. My name was all over the place! I told Dr. Skinner that she needs to purchase more flamingos for next year since it was such a hit!

As always, we covet your prayers: 

1. Pray for minimal/manageable side effects for the new chemo and for it to be effective and show progress quickly. We don't want to put limits on what God can do, so we are asking for prayers for complete healing!

2. Praise that all of the necessary tests and insurance approvals were done quickly. 

3. Praise for the ability to continue to share my story to encourage other women, help raise awareness, and point others to Christ. 

Game Plan and Second Opinion

 First of all, I want to thank you all for the love, support, but most of all the prayers during our cancer journey. It is a daunting task at times but I have a lot of love and support to help me and crazy kids to keep my smiling!

One song that has really helped me and has kept me focused on God and His plan for me has been by Hope Darst - Peace Be Still. 

I don't wanna be afraid

Every time I face the waves

I don't wanna be afraid

I don't wanna be afraid

And I don't wanna fear the storm

Just because I hear it roar

I don't wanna fear the storm

I don't wanna fear the storm

Peace be still

Say the word and I will

Set my feet upon the sea

'Til I'm dancing in the deep

Peace be still

You are here so it is well

Even when my eyes can't see

I will trust the voice that speaks

https://www.youtube.com/watch?v=lsIpGiz3SfQ

It is true, I don't want to be afraid every time I face cancer but I am human and fear sneaks in. It isn't easy, it hurts- emotionally and physically but I know there are blessings in trusting in God and listening to Him. 

To update everyone, I had my PET scan and Dr. Skinner called with the results and Wil and I went in to see them and go over treatment plans. The PET did reveal that the spots that were seen on the CT were "hot" which means cancer (in the picture below it is the round very bright spot). The great news is that the PET didn't reveal more disease than what was expected from the CT. I have had some people ask me if it is still ovarian cancer since I don't have my ovaries (and haven't had them since 2012). The answer is yes, still the same cancer that keeps coming back. 

Wil and I have prayed diligently about the treatment options that were presented to us. We decided to go with the oral chemo drug but to start it after our family vacation mid-September. I have to get an eye exam, Echocardiogram (ultrasound of my heart), labs, and chemo teaching done before I am to start the medication. One of the praises is that insurance has already approved the med, so we are good to go on that front. Wil and I go in on 9/2 for the chemo teaching and the labs, awaiting insurance approval for the echo. 

We also decided it was time to get a second opinion. We see this not that we don't trust our oncologist because we most certainly do, but just as gathering more information. It is possible to get other treatment options (for now or in the future) or that we end up with the same exact treatment plan we are already pursing. 

Thank you to Jim Condon, one of our family friends, for pulling some strings for us at Johns Hopkins. Wil and I will be going up there the beginning of October to be seen in person. One of the people that helped set this up was named Lisa. Another God moment happened when she called me to get my details, and asked about my (919) area code number. I've had the same cell number since high school and told her I grew up in the Raleigh area. Lisa told me that she is from PA but went to college in Winston-Salem. So we got to talk about Dewey's Moravian cookies and sugar cake. She also said that it was a nice change of pace to have such polite people to talk to when we kept saying "yes ma'am and no ma'am." 

Athena's Run for GYN cancers has been a great event we have participated in for the last 8 years. Due to COVID, there will be no actual run this year but they are still raising money. This money goes towards research, funds special projects for the local GYN cancer support group that I have been part of since my diagnosis, and much more! Please consider "adopting" a flamingo to flock the yard at my cancer center and help in the fight against this terrible disease. 

https://www.athenasrun-ws.org/

Life doesn't stop just because you have cancer. I still work full time, I am running (having to start back slowly after my stress fracture), spending time with family, and enjoying the life God has given me. 

Right after a run

Story time with Daddy

More than anything, we love having prayer warriors out there. Here are requests and praises: 

1. Prayers for continued wisdom and guidance as we start this next treatment. 

2. Prayers for minimal/manageable side effects from the medication.

3. Pray that the drug is effect and works quickly. 

4. Praise for getting second opinion scheduled. 

5. Praise that the new chemo drug was approved by insurance.

6. Praise the PET results were consistent with the CT and no further disease was seen.  

Whack-a-mole Round 4

 First of all, I totally dropped the ball on updating my blog after surgery. My main issue that plagued me since surgery was diarrhea. It was all just caused from the surgical changes. After seeing my GI doctor, it has evened out with medication. 

I had a routine CT, labs, and physical exam back in March/April. Everything looked good then, including the new cancer marker, HE4. Before surgery with known tumors it was 68.7. In April, it was down to 49.5. The end of June is when it changed and starting increasing. It bumped up to 54.7 so made the plan to check it again in four weeks. 

We hit our knees praying that the blood test would show it decreasing, but our want was not God’s will. It increased again and up to 60.5. So Dr. Skinner ordered a CT scan and Wil and I went in this last Thursday for the results. Unfortunately, my cancer is back. There are three spots that were seen on the CT. The game plan is to get a PET scan to verify what we already know is there and see if anything shows up. 

The good news in this is that the treatment plan does not include surgery at this point. Also, the blood marker works so we can monitor my cancer better. There has been so much research and new treatment options for my exact type of ovarian cancer done in the last 8 years since this journey began. 

The way that my cancer works is that like playing whack-a-mole. It will be something that I will always deal with on this Earth. When that dang mole pops up, we whack it back down with a new treatment. I have stopped the Letrozole oral medication and we were given other treatment options to consider while we wait for the PET scan. 

Our prayer requests as “beast mode is activated” (my cancer sister Erin told me this one):

1. Praises for the research development on low grade ovarian cancer treatments. 

2. For the PET results not to show anything other than what was seen on the CT scan. 

3. For us to see the blessings in the brokenness. 

4. For wisdom and guidance as we consider the treatment options. 

5. Most of all, for God to be glorified in my cancer journey. 

IV for the CT scan

Contrast for CT scan, Bottoms up!

The largest of the three tumors on the CT scan.

Recovering at home

We officially got to go home on Sunday. I had to do a bladder test first though. The nurse filled my bladder through the catheter with 200 mL of saline, then took the catheter out. I then had to pee out at least the 200 mL. Let me tell you what, peeing out cool saline is such a weird sensation. But I officially passed!

Getting home was pretty uneventful. I was able to take my first shower since Tuesday morning and my hair had enough grease in it to fry some chicken. My sister Lauren told me it was so bad I had to use shampoo twice....

Wil and I waited until Monday afternoon to pick up the kids from daycare. I was feeling good enough to go with him. As soon as Wil got out of the car , Wilson saw him from the playground and starting yelling "My daddy!!!" Then he saw me and he started yelling "My daddy!! My mommy!!!" He was very curious about my boo-boo and tried to lift up my nightshirt to see it....

Wilson has found a new toy in my incentive spirometer. This is a device used to make you expand your lungs after surgery to prevent pneumonia. He loves to blow into it to make the indicators bounce around.

The rest of the week has been spent in bed with my Mom binge watching the last two seasons of Real Housewives of OC. I haven't had much of an appetite, so I'm losing weight.

Now onto the bowels... I've had pretty severe diarrhea, like every 20 minutes or so. Dr. Skinner gave me the go ahead to take Imodium. Then it evened out. Wednesday after about noon, I didn't have any bowel movements or farts... Not a good thing. I was having pretty severe abdominal pain/cramping with no relief. Then at midnight, after trying to take a Zofran, I started throwing up . Keep in mind that my abdomen is held together from a vertical incision with 27 Staples. I felt like I was being ripped apart. Then another vomiting episode at 2:30.

I called my oncology nurse, Lauren, the next morning . She talked to Skinner and I was sent to get some x-rays done to make sure nothing was wrong. All they showed was my bowels needed to get a kick start, so here comes a suppository. I did thank Skinner for violating me from afar. All is good now !

Now that everyone is up to date on my bathroom habits .... I went in today to see Liz one of the practices' PAs (and one of my favorites ) to get my staples removed. Wowza, that wasn't fun at all... Thankfully I was the only patient there at the time because I yelled a couple of times pretty loudly. I feel better now that they are out though.

So game plan, I still can't drive until I can twist around, stomp my foot, and laugh without holding my stomach. I've already started the new medicine (aromatase inhibitor) to stop the conversion into estrogen. I'll follow up with Dr. Skinner on December 2nd.

A big thank you to all of our family that has stepped in to help take care of me and the kids. Thanks to my parents who have stayed with us this week, helping with me, the kids, laundry, and chores !  We couldn't have done this without you ! And especially to my hubby Wil, he slept every night at the hospital with me in the most uncomfortable sleeper chair imaginable. He wiped my butt (since I couldn't bend around to do it myself), was patient with me, encouraged me, and prayed for me when I couldn't find the words.

I would like to thank all of you praying for us and for my recovery. I love all of my cards, texts, meals, and gifts.

Prayer requests:
1. That God continues to show us glimpses of His goodness in this cancer journey.
2. For my abdomen to continue to heal and for more mobility .
3. For my bowels to even out and no more vomiting episodes .

Praise reports:
1. Staples are officially gone.
2. Great medical team on my side that helps with any need that comes along with compassion and humor

"And we know that in all things God works for the good of those who love him, who have been called according to His purpose." Romans 8:28

Hospital recovery

Whew y’all .... what a week. The days and nights are starting to blend together but I’ll try to give you the highlights.

Bowel prep Monday was as fun as ever. Only clear liquids to eat and pounding a whole bottle of miralax in Gatorade. Uggg getting nauseated just thinking about it.

The kids left Monday night to go to Wil’s parents for the week. We had to wake up super early for a check in time at 5:30 am at the hospital . After getting checked in, changed into my hospital attire, I had to say goodbye to my family in the hallway to preop and will came back with me. We had to sign all the consents and meet with all of the doctors. Our team was amazing and I was blessed to have an old ICU coworker set me up with a great CRNA. She gave me some Versed and I don’t remember much after that.

In surgery, my docs found more than what was expected from the scans. My surgeons took out about two feet of small intestines and part of the large where the one mass was seen. The lymph node was taken out as well. Then there were places on my bladder that had to be removed, the largest one about the size of a thumbnail. The good news is that they were able to remove the tumors, I had less adhesions than the last surgery, and no illeostomy!

So they left the catheter in to allow my bladder to stay decompressed and allow to heal. The game plan is to remove it today and then allow me to pee and then scan my bladder to ensure I’m fully emptying it.

The first room they put me in was hot as hades. Apparently the lady wh8o was in it before me had it set to 80 degrees, so I became very nauseated. So after engineering came in and couldn’t get the air to work , I was transferred to the room next door.

That day is still really foggy. The following day I was advanced to clear liquids, which backfired. I was throwing up all night and extremely nauseated. Dr. Stuart took me back to ice chips and started some medication to help my bowels to move. The first day that I wasn’t sleeping all day and felt more like myself was Saturday. Today is even better. I have only been on Tylenol for pain for several days and medicine for gas. I am on a regular diet and handling it well.

Dr. Skinner just did rounds and I'm going home today! Just waiting on orders and getting this catheter out!

Thank you all for the prayers and support. God has answered a lot of prayers. Please pray for continued healing.

Breakfast on Sunday

Pancake socks since I couldn't eat

Apparently I took a selfie after surgery

Going for a walk

Sunrise on one of our morning walks

Just one of my many bruises

Waiting in pre-op