Two Years - 8.24.24 - & Maine/Sugarloaf Recap

Two years! Two years of living with MBC. Two years of thinking about dying. Two years of praying scans show nothing new. Two years of living in three-month spans. Two years of learning how to live a normal life when reality doesn't feel normal. But I'm here. I'm still alive and doing my best to thrive! 

When I first went through cancer, I felt really alone. Majority of people never checked in to see how I was doing. I thought after being dx with stage 4 cancer that people would care more, check in more. It's been hard for me to accept how little people have checked in on me. I tell myself it's because my life is so normal that people forget, which is a good thing. I want my life to be normal. Or maybe I haven't checked in on friends enough when they were going through hard times. Or maybe people are just scared of cancer and want to keep it out of their life. Or maybe I just need to accept this is just how people are, including myself. I know I haven't done the best job of checking in on friends. I know I need to do better and make sure people feel cared about. We all have things going on and forget to check in on others. I don't say any of this to make anyone feel bad or get sympathy. I say this because it's been interesting for me to see this happen, and it's also made me try to be a better family member, friend, neighbor. 

But on to the health update. My last scan in July showed nothing new, nothing active. I cried when I received the news because I thought I had a new lesion on my coccyx. I was so relieved to get good news. I've now graduated to scans every four months!

In the past year, the remaining pain/discomfort I was having has pretty much gone away. Every now and then, I feel a twinge, but for the most part, I forget about the bone and nerve damage. But thanks to that pain going away, I have been able to get back to running ... and also being able to stand up straight from sitting in one movement! I have prayed for God to continue to heal me and work miracles in me so that my testimony is undeniable. The only way I know it's been possible for me to get back to marathon running is through God's grace and healing. 

Mom and I traveled to Maine in May so I could run the Sugarloaf marathon in an attempt to qualify for Boston. Mom has been adamant through everything that I would make it back. So, we spent Mother's Day weekend with me trying to do that. It was a truly special trip. There was a big solar storm, and we were treated to the Aurora Borealis dancing right over our cabin. Some tears may have been shed at the unexpected surprise and the beauty of the lights. 

I felt like seeing the lights was a sign of good things to come. I woke up race day to a beautiful morning with much cooler temps than we had been having back home. I jogged the half mile from our cabin to the race start and was ready to get some redemption after DNFing this race back in 2012. This would also be my first full after the MBC dx and not knowing a year before if I'd run again. The gun went off, and we were off! The miles clicked along, as I enjoyed the beauty around me and focused on being grateful for making it back to something I love. I saw my mom multiple times along the course and enjoyed looking for her as I ran. I was on my goal pace through mile 20, but I could feel the wheels coming off. I told myself we had not traveled that far and I had not already run 20 miles just to watch my BQ go out the window. I held on and finished in 3:33, a few minutes slower than my goal, but a BQ nonetheless. I cried as my mom hugged me at the end. This run was for her - my steadfast cheerleader. Hopefully, my cushion is enough to get me into Boston!

With two amazing things complete, we were now hoping for the trifecta - just had to find a moose! When I say I screamed when we came across one, I literally screamed. I couldn't believe there was a moose in the road. Trifecta complete - Aurora Borealis, BQ, moose. What a trip, and it wasn't even complete yet!

From Eustis (Sugarloaf), we headed back to Boston by way of the coast. We explored a couple of state parks, saw lighthouses, visited Kennebunkport, and enjoyed the Marginal Way in Ogunquit. Marginal Way is one of my fave places now - the trail has unbelievable views, and I could have sat on one of the benches for hours.

From there, we stayed in Portsmouth where I got to see my dear friends Hannah and Renee. Hannah and I were both diagnosed back in 2016 and became friends through a virtual group. We were able to meet in person during a Boston marathon weekend. When she recurred as stage 4, it broke my heart - not my sweet Hannah. How could my breastie, my birthday twin be stage 4? Life just isn't fair. She was one of the first people I reached out to when I was diagnosed with MBC. Her knowledge has been invaluable, and I cherish our friendship so much. I think I hugged her so hard I almost broke her! I met Renee through Hannah and was so glad we finally got to meet in person. She is so special to me, and it was so nice to be able to give her a hug!

If you made it to the end, thanks for reading - it was a long one! I just ask for your continued prayers for healing for me, for Hannah, for Renee, and for all those going through MBC. The pic of us above is a pic of three women just desperately wanting to live long lives with our families and friends. We are in dire need of more research to find new treatments and a cure. Please consider donating to Metavivor in celebration of me making it two years!

 

Goodbye 2023, Hello 2024

2023 was a pretty good year, as far as my health is concerned. We received great news every scan, and I have felt pretty normal on my treatment regimen. I did have major surgery, but it went well and I am fully recovered. I should have taken more time off of work but too late for that. I am glad to have that behind me! 

I was able to start running in August and have gradually built my mileage up each month. I raced my first and last race of 2023 in December down in Okaloosa, FL. I was top female! The weather was horrible, but I was so happy and grateful to be back racing that I didn't care what the weather was like. It felt so good to be back out on the roads, doing what I love. I do have occasional pain, but it is so much better than it had been. I hope to continue to run, race, and build my mileage back up in 2024! I deferred the Jekyll Island half last year and didn't think I'd ever run it again. I am happy to say I am signed up for the 2024 edition and will be running in it a couple of weeks! I'm not to a point where I can run 13.1 hard, but I am just excited to have the endurance back to run 13.1. I'm looking forward to a nice, long weekend in Jekyll, one of my fave places!

I was supposed to have my last scan of 2023 on 12/22, but insurance denied the PET scan so my scan was changed to a CT scan and pushed back to 12/26. The nice thing about a CT scan is the results come through quickly. I received the great news that I'm still NEAD (no evidence of active disease) a few hours after my scan. 

Going into 2024, my main concern is my medicine. My insurance has changed it from tier 2 to tier 3, meaning it's going to be more expensive. It's $14,000 per month (without insurance), $80 per month (with insurance), and I have been using a co-pay card to get it for free. With the tier change, it may be $200 per month. I am hoping I can still use a co-pay card instead of paying thousands of dollar this year for medication. My other option is to change medication, which I really don't want to do. I feel fine on Ibrance and am doing well on it. It frustrates me that I either pay up or switch meds because insurance changed how they are covering it. 

I hope everyone has a year full of good health, joy, gratitude, and love. Please pray I continue to have clear scans and little to no pain!

One Year - 8.24.23

One year. It is hard to believe one year has passed since my stage 4/MBC diagnosis. I'm honestly not sure how I feel about it. I should be ecstatic that I'm here, feel good (for the most part - my medicine makes me tired and sometimes I feel crummy), and have no evidence of active disease - and I am. Yet, I can't help but think it's one more year gone of my more than likely shortened life. I also look back at the last year, and I feel I've wasted it in a sense. Did I find my purpose? No. Did I make an impact? No. But did I survive the worst year of my life? Yes. 

The rug was pulled out from under us, and we managed to stay afloat. Life has pretty much been normal (if you ignore the countless doctor appointments), and I am very thankful for that. Along with countless doctor appointments, there have been countless trips to the coast! It's hard to be sad when you are surrounded by God's beautiful creation. 

I've continuously prayed for God to give me a testimony of healing, a testimony of hope, which is one reason why I'm finally making a "formal" announcement. How can people be inspired by my testimony if I'm not sharing it? When I got off the call with Duke, I had very little hope left of ever being pain free again, much less running. After doing a work challenge with a lot of walking, swimming, cycling, and yoga, I realized I wasn't as stiff as I had been, and I started wondering if exercising in the morning was helping. I decided to try running in the morning and am so happy to say I've started week three of running. My constant ache has gone away. I've had very little stiffness. Do I feel 100%? Absolutely not. I feel old and out of shape. But do I feel like I'm finally turning a corner? Yes! 

Chalk it up to a mix of time, radiation finally helping, and my medicine helping, but I really feel like it's an answered prayer and the blessing of a miracle. I was so tired of having pain every day, no matter what I did or didn't do. I was reminded throughout the day of having cancer when I couldn't stand up straight. Now, when I stand and can straighten up, I'm full of gratitude and have felt the need to share the testimony of healing I've been given. Admittedly, it is a strange place to be. As I'm full of gratitude for healing and my prayer being answered, I see friends who are struggling. Why me? Why not them? I don't have an answer for that. All I can say is hold onto hope, no matter how small the sliver of hope becomes. 

I pray in this second year I'm able to find my purpose, do bigger things, and really enjoy life now that the dust has settled. I want to find the courage to get SCUBA certified and go swim with the sea turtles. I want to plan a trip to see the Northern Lights. I want to get more involved at church and help others. When I write my two-year update, I don't want to say I felt like I wasted a year. I want to say I fully lived!

Please continue to pray for healing. Please pray I'll be an outlier and beat the odds. Please consider a donation to Metavivor!

 

Surgery, unexpected loss, & scans

At the time of my diagnosis, I was immediately switched to medication to put me into menopause. I knew I'd eventually want to have an oophorectomy, but I wanted to wait until things settled down a little bit. I started the process in April, shortly after my Duke visit.

The original recommendation was just BSO, but due to an abnormal pap smear, the recommendation changed to hysterectomy & BSO. Thankfully, the biopsy came back normal, but we decided to proceed with the hysterectomy. I preferred this anyways, as I wanted to be done being worried about GYN cancers. Surgery was scheduled for May, and I was fairly nervous about it. The surgery went smoothly, but it definitely wasn't as easy as I was expecting based on what others had said. I only took one week off work and should have taken an additional week. I'm three months out now, and I feel 100% recovered. I also feel better being in "natural" menopause than I did being in medicinally induced menopause. 

The week after I was cleared to return to full activity, Jason's mom unexpectedly passed away. Due to some people behaving inappropriately, additional stress was created. It's really unfortunate how we weren't able to grieve appropriately due to unnecessary drama. To keep this cancer-focused, I'm not going to get into it, but I was incredibly worried the stress was causing my cancer to spread. I couldn't sleep because I was so worried my next scan would be horrible. It's a horrible place to be - grieving a lost loved one and also wondering if your cancer has spread. 

As I sat and waited for my onc to come in my scan results, I thought I was going to be sick. I was convinced this would be the appointment where I was told I had progression. She came in, told me to get up, and let's go look at my imaging. I lost it and said I knew it was bad. Praise God, it wasn't bad. My scans showed nothing new. I had asked last time to see the imaging, and that's why she wanted me to go look at them. I had kind of seen the lesion on imaging during my bone biopsy, but this was the first time I had really seen it and been able to look at it. The lesion is circled in the pic below. 

May and June were pretty stressful months, and I'm glad they are behind us. Going through surgery, unexpected loss, and then worrying about cancer progression is just flat out hard. 

Duke

Despite having SBRT (radiation) in October 2022, by February 2023, I was still having pain and unable to run. I was referred to Duke for an appointment at their bone metastasis only clinic. They have a procedure called cryoablation that I was hoping to find out more about. Mom and I travelled up there in early April and, despite why were there, had a pretty nice time. The campus is beautiful, and we enjoyed wandering through the gardens and seeing the Duke Chapel. 

On the medical side, I left somewhat disappointed. I met with a nurse practitioner who was going to present my case to their board. A few days after my appointment, she called me to let me know the doctors weren't sure if my pain was from my lesion or my SI joint. They wanted me to get an SI joint injection and physical therapy to help try and determine the pain source. I knew the pain was from the lesion, but in order to pursue cryoablation, I had to have the injection and PT. This really frustrated me because it all takes so much time. I'm stage 4. Time is precious. I don't want to spend it in pain and waiting on appointments I know won't help. 

Needless to say, the injection and PT didn't help, and I ended up having a discussion with the interventional radiologist who would perform the cryoablation. He said while my lesion is an ideal location for the procedure, he wouldn't recommend it unless my lesion grew. I was really upset after the call with him. I was pretty much told you'll just have to get used to the pain, not do something you love, and you'll only get help if you have progression. I cried a lot and was really angry - it was a big emotional hit to me. 

I've prayed daily for God to give me a testimony that will help lead people to Him. I've prayed to be healed. I've prayed for pain relief. I wondered if now was the time to actually be public about what's been going on. If people don't know what's going on, how can I help lead people to God through my testimony? 

Six-Month Check-In

I'm six months out from diagnosis (8.24.22), seven years out from original diagnosis (2.25.16), and I feel like I'm doing well. I am at the oncologist a lot while we figure out my medicine dosing and schedule, but I feel okay on all my medicines. I'm working full time, and Jason and I have traveled some. I have had to take time off of running due to pain and had been very discouraged. Running is my stress relief. It's my time with God. It's time with friends. It gives me a competitive outlet. It challenges me. And honestly, I only have two hobbies so losing one has been tough. Over the past couple of weeks (thanks to rest, meloxicam, PEMF, and acupuncture), I have finally felt some improvement and have been able to run a few miles at a time. I'm very thankful for that. 

I'd be lying if I said I don't feel anxious. I think about cancer and death every single day. Every day that goes by puts me closer to my last day on earth. And while that's true for everyone, I'm very aware of it because I know more than likely what I'll die of. I wonder how I'll feel in a month, in a year. When will I have the PET scan that shows progression? Will I make it to 50? Will I be here next year? With that  being said, I think I have years left in me, and I don't think I'm dying soon. I do want to be comfortable with the idea of my own death, though. I went to a class at church that had a lawyer, financial advisor, funeral home director, and hospice administrator come in to speak. It was really informative, and it helped me get my head around the "practical" side of dying. 

I can work my way out of anxious thoughts, thankfully. I have a firm foundation in God, which helps tremendously. I know He is with me. I also don't want to waste my time here on earth being worried and sad. We all have limited time, and I choose for my time to be filled with joy.

I've prayed for God to grant me patience as he builds my testimony. I've prayed for Him to give me a testimony that will help lead others to Him. Please pray the same!

Goodbye 2022, Hello 2023

When 2022 started, I had high hopes for a great year. I was hoping to be able to come off tamoxifen for a while, maybe think about starting a family, feel good, get some fast races in the books ... being diagnosed with MBC was nowhere on my radar. August came at us hard. I did good to make it through August-September-October in one piece. Emotions started to settle down come November, but I found myself still dealing with pain. The pain would sometimes be so sharp that I felt sick and was scared to move for fear of causing more pain. I got used to a constant dull ache. I was hopeful after having SBRT that my pain would go away, but it has yet to go away. It seems to be related to high-impact activity, which means I'm on a running break to end 2022 and start 2023. I'll be starting acupuncture soon with hopes of finding relief so I can get back to running. 

As far as medicine, I started Lupron/letrozole/Xgeva in September. I started Ibrance late October and made it through the first cycle, but my ANC was too low to continue at 125 mg. I was off 2.5 weeks instead of one and then started back at 100 mg. My ANC is still too low, so I'll be off a few weeks and then start back at 75 mg. I have felt pretty good, though. The first week on 125 mg presented random bouts of feeling unwell, but it was manageable. Every time I'm told my ANC is low I'm surprised because I feel like I should feel bad or really fatigued. I'm thankful I'm feeling pretty normal despite all the medications. I hate that I have no estrogen at the age of 40. While I've had weight loss instead of weight gain and hot flashes aren't what I expected, I can't help but think of my heart. It's in the back of my mind that I may have heart issues in the future ... but the medicine is helping keep me alive so I can hopefully live long enough to have heart issues. 

I had my 3-month Pet/CT right after Christmas, and while I thought it would be good news, I still had a little bit of doubt. I know things can be going good and then change in a blink of an eye. We did get good news, though - NEAD, no evidence of active disease! My lesion is still visible, which I knew it would be, but it's sclerotic, scarring over. Praise, praise, praise. 

The clear scan and constant Ibrance dose decreases have lead my medical team to discuss stopping Ibrance and keeping it in our back pocket. I am not crazy about this idea and will probably choose to continue Ibrance. Breast cancer is more aggressive in pre-menopausal women, and I don't feel comfortable not being on anything more than endocrine therapy. I was surprised at this suggestion, as I didn't think this would be brought to the table until years down the road.

What does 2023 hold? I pray daily it holds healing and a miracle. I pray that God gives me a testimony of healing that will lead others to Him. I pray that I use my life for good. I pray that my life has a purpose. I pray for joy, happiness, laughter.