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.