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. 

Radiation, zap me away to my vacay

I knew I was going to have SBRT (stereotactic body radiation therapy), but the question was when - I had to be mapped, insurance had to approve, the radiation oncologist had to make his plan ... and we had vacation coming up. This is where I became very frustrated with the care I was receiving. The navigator was useless. I called to find out the status and her attitude was horrible. She has yet to reply to an email I sent over a month ago asking for help. The radiation nurse was also pretty useless. When I asked the status, her reply was, "It hasn't been two weeks so it's not ready." She didn't even go and talk to the doctor to see what was actually happening. Thankfully, my medical oncologist's nurse is fantastic. My radiation was scheduled less than an hour after her stepping in. 

While I waited for radiation, I did get a second opinion from my old radiation oncologist in Charlotte. He agreed with the plan and was also very optimistic about my prognosis. I was thankful I reached out to him and that he took the time to talk with me. The plan was to not just go at the lesion with a palliative dose but also with an ablative dose. Goal was to not just get rid of pain but to get rid of the lesion. I am also lucky in that my lesion is in a place that's not at a high risk for fracture. 

I turned 40 on Saturday and started rads the following Monday ... happy birthday to me! I had five treatments (once per day, Mon-Fri). My skin didn't seem to be affected at all, but my digestive system did not agree with rads. Side effects resolved pretty quickly, but even two weeks post rads, I was starting to wonder if I was going to be one of the patients where it didn't work for pain. I had a really hard time straightening up after sitting and would walk bent over for a few seconds. Admittedly, I was really discouraged. I could run normal and with no pain, but it was hard to accept that I may already have mobility issues. How do I go from running almost a marathon PR to not being able to stand up straight? 

I'm over a month out now and am finally seeing improvement. The stiffness has greatly subsided, and I'm able to straighten up better. I can't twist fully to my right or stretch that side too much, but it's tolerable. I definitely feel better than I did before rads and for the first few weeks after. I won't know the status of the lesion until end of December. It will hopefully be smaller and show healing. 

Our vacation was so well timed. I was pretty exhausted after the diagnosis, radiation, starting medicine, etc. and really needed a break from life. No work. No doctor appointments. We had a great time up in Swansboro, NC and went to Emerald Isle, Aurora Fossil Museum, and Shackleford Banks. We enjoyed exploring a new place and spent time kayaking to islands to look for shark teeth. I even ran the Emerald Isle half and placed 3rd female! 

Jason took this pic of me doing what I love at Shackleford Banks. I had just found a shark tooth and was looking for shells, while soaking up the beauty of God's creation. Even in times of darkness, there is beauty around you.

Month out from dx update

The past two weeks have been busy with more appointments and trying to keep life normal. I met with the radiation oncologist to see what the plan is for me, and I also met with a second radiation oncologist to make sure I was getting the best treatment possible. Both were optimistic, and the radiation will not be just for pain relief but to also destroy the lesion. I've been mapped out for radiation and my body mold was made. I'll have a simulation done before my first treatment. I am hoping radiation will start soon, but it apparently takes two weeks for a plan to be made and then radiation has to be scheduled. The navigator didn't care that I'm stage four, have discomfort, and can't start my last medicine until after radiation is completed. I'm honestly not sure how she ended up in her role, but she's the first person I've encountered at SCOA that I don't care to interact with. 

I also spoke with a third oncologist and now have two saying consider Kisqali and SCOA saying Ibrance. Ibrance has been studied longer and there are a lot of women who do well on it, but latest studies give the edge to Kisqali as far as PFS (progression free survival). I'll at least get started on Ibrance, as insurance approved it, but will be talking with SCOA onc about Kisqali. I've already started my three other meds - two are monthly injections and one is a daily pill. The Ibrance (or Kisqali) will be the last piece. 

I really liked the third oncologist, and he was very optimistic. He said it's possible the lesion has been there since my original diagnosis in 2016, and with that and the fact it didn't light up on the Pet/CT, he would think it's slow growing. Like the SCOA onc, he also talked about my future years and years down the road. I'm realistic and know things can change with any scan, but I'm also optimistic and truly appreciate having an optimistic care team.

So with this update, please pray radiation is successful. Please pray for healing. Please pray for a long life. I know God can heal me. I know God can work miracles.