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. 

The waiting game

Wait for imaging.

Wait for biopsy.

Wait for results.

Wait for appointments.

Wait for more imaging.

Wait for more results.

Wait for radiation.

Wait for side effects.

Wait for more imaging.

Wait for more results.

Wait for bad news.

Wait for good news.

Wait for a cure.

Just wait.

... and while I wait, the world keeps spinning. The world does not stop even though I'm being left in a state of waiting. Life goes on.

Big questions, good news

We entered last week with two big questions lurking over us - Will I need another bone biopsy? What will the PET scan show?

I have been constantly praying for a sliver of good news. Since diagnosis, I have been trying to keep anxiety under control. The anxiety caused me to feel constantly sick. Add being mentally and physically exhausted to that and we really needed some good news. 

Thankfully, they were able to get my hormone receptor status from the bone sample they had and no additional biopsy was needed.

And even better, the PET scan did not show anything other than the one lesion we knew about. Praise, praise, praise. I knew it was a good sign when the PET scan tech saw my shark tooth sticker and whipped out a pic of the huge megalodon he found when diving in the Cooper River. 

Having only one spot is really, really encouraging. While the situation is still devastating, this is good news. I'm considered oligometastatic, and while I am not reading stats, I know this gives me a better prognosis. At my first oncology appointment, there was no talk of how long I'd be around (not that any of us know), but at my appointment to review the PET scan results, my oncologist was talking about 5-7 years down the road. She said she and the nurses were so happy when they read the results. I know things can change, but I am believing I will be a miracle. 

This coming week holds a lot of appointments - brain MRI, chemo teaching, radiation consult, plus starting two out of the four meds. I will be on Ibrance, Lupron, letrozole, and Zometa. Ibrance will be three weeks on / one week off. Letrozole is daily. Lupron and Zometa are monthly injections. Lupron and letrozole will put me into menopause, and Zometa will help protect my bones due to my body not having estrogen. Ibrance is a CDK 4/6 inhibitor, and while it hasn't been around a super long time, there are women who are having amazing results on it. I will be one of these women. I'm guessing rads start week after next. It should give me pain relief and the hope is the lesion will disappear. I'll have another PET scan in three months. 

I'm nervous about all of these new meds. The possible side effects are scary. The unknowns are scary. I'm trying to focus on God and let His peace settle over me. I'm trying to not worry about the future and take away from the present. Please pray for peace in my mind, body, and heart. 

When the other shoe drops

This blog started as a place to recap my races, which I did for a while, and then strayed away from it. With my newest life development, I debated whether to start a new blog or use this one. I decided to continue with this one because I'm choosing to believe I have many miles to run.

I was diagnosed with stage 1 breast cancer February 25th, 2016. I underwent a lumpectomy followed by radiation, and I have been on tamoxifen the past six years. My tumor was fairly small and there was no node involvement. In other words, I had a great prognosis. 

With my hormone receptor status of ER/PR+, I've known the five-year mark wasn't as magical as people made it out to be. I knew I could have a recurrence 20, 30 years down the road. I was also aware of the stat that 30% of early stagers end up stage 4. So, while I have lived my life optimistically, I have known there was the chance the other shoe would drop. 

The other shoe dropped on August 24th, 2022, and I'm now part of the 30% of early stagers that find themselves dealing with metastatic breast cancer. It's terrifying. When I read my bone biopsy report, I thought I was going to pass out. Never in a million years did I think I would ever have stage 4 breast cancer, especially in my 30s. A stage 4 cancer diagnosis leaves a wake of devastation in its path.

A week and a half later, I still sit here and think, "How the hell did this happen? How am I stage 4?" I am angry beyond belief. I am devastated. I am scared. I am in disbelief. 

So, what led to this diagnosis? I had SI joint pain back in March (or so we thought), and it went away after a month of stretching and adjustments. Fast forward to end of June, and the pain was back. Back to the ortho I went, and an SI joint injection was scheduled for end of July. While waiting on the injection, a nuclear medicine bone scan for unrelated pain had been ordered by my oncologist. It was negative - I will never trust a bone scan after that. Jason ordered a pelvic and abdomen MRI to check more things out, and unfortunately, the radiologist saw a lesion on my right iliac bone. His wording really bothered me (consider it a metastatic lesion until proven otherwise) because it seemed so harsh. He recommended a bone biopsy, which was performed August 19th, 2022.

What do you do when the other shoe drops? Well, me - I have cried - a lot. I have tried to convince myself the diagnosis was incorrect. I'm wondering when I will wake up from this nightmare. I pray, pray, pray. I'm praying to be healed. I'm praying for a miracle. I'm praying God gives me peace. And I pray for my family and friends. It's not just me who has been rocked by this diagnosis. It's also those who love me. I thank God for them every single day. 

What's next? I met with Dr. Prophet at SCOA on September 1st, 2022, and will have more imaging (Pet/CT, brain MRI). I may have to have another bone biopsy. Unfortunately, the lab didn't test my hormone receptor status, and we need that to determine treatment. If my HR status is the same as my initial diagnosis, I will be on Ibrance, Zometa or Prolia, Lupron, and letrozole. 

What can you do to help me? Pray - pray for an amazing response to my treatment; pray I am on this first line for an unbelievable amount of time; pray I don't feel like crap on it; pray for peace in my heart; pray for my family and friends. Donate to Metavivor. I have posted about them on my Facebook page over the years, and donations to them can literally help extend my life.