It’s been a while since my last update, and a lot has happened over the past few weeks. I’m sorry it has taken me so long to write all of this out. There has simply been so much to process, manage, and navigate lately. But I wanted to give you an update and, most importantly, thank you for continuing to pray for me.
On Monday, August 31, I was scheduled for my next treatment of Eribulin. This drug has been incredibly hard on my body—it’s the treatment that landed me in the hospital just two days after my first infusion earlier this month. My previous treatment had been on Friday, August 21, and I was really looking forward to finally getting onto a more normal treatment schedule with the new, lower dose.
Instead, when they received my bloodwork that day and saw that my blood counts were still very out of balance, they decided to cancel my treatment and schedule an appointment with my oncologist for Friday. This concerned me. I didn’t want to delay much-needed treatment, and I wasn’t sure why I was being scheduled to see my oncologist without a treatment appointment.
In the middle of all of this, I also had an appointment with my neuro-oncologist to go over the results of my brain MRI. I absolutely love this doctor. He has such a gift for being both realistic and positive at the same time. I always walk away from his appointments feeling hopeful, even when the news isn’t necessarily what we wanted to hear.
Unfortunately, the MRI did show some progression in my brain. The good news was that the cancer in the dural space—the area that led to my leptomeningeal disease (LMD) diagnosis about a year ago—appeared to be about the same as it had been a few months earlier.
Before deciding what the next step should be for the cancer in my brain, my neuro-oncologist wanted to repeat a lumbar puncture (spinal tap) to make sure there was still no cancer in my cerebrospinal fluid (CSF). It had been a year since my last spinal tap, so he felt it was important to check again since I had progression elsewhere.
The reason this matters is that the chemotherapy I’m currently receiving does not cross the blood-brain barrier very well. The previous two treatments I was on did seem to cross that barrier. If the spinal tap showed no cancer cells in my CSF, his recommendation would likely be to use targeted radiation to treat the new spots in my brain. If cancer was found in the CSF, however, he recommended placing an intrathecal port in my skull so that chemotherapy could be delivered directly into my brain and spinal fluid, along with radiation and my current chemotherapy through my chest port.
Honestly, the thought of all of that was overwhelming. It sounded like an awful lot for my body to handle.
Then came Friday, September 4, when we met with my regular oncologist.
As I mentioned, we thought it was strange that she had scheduled this appointment when I had just seen a PA earlier that week and still needed my next treatment. But when she walked into the exam room, sat down, and asked, “Do you want to continue with treatment or stop everything? At some point, you need to consider your quality of life,” Drew and I were completely shocked.
Was this what she thought this was—the end of treatment for me? Was she about to start talking about end-of-life care and comfort measures?
It just felt way too soon.
Especially because the tumor markers had actually gone down after the two Eribulin treatments I had been able to receive. My liver enzymes had also come down. Those were encouraging signs that the treatment may be doing something against the cancer, even though my body was struggling tremendously to tolerate it.
My oncologist explained that my bone marrow was essentially exhausted and needed significant supportive care. I told her very clearly that I wasn’t ready to give up.
So, for now, continuing treatment is going to look very different. It may mean going into Texas Oncology almost every day for supportive care—things like additional iron infusions, blood transfusions if needed, and bone marrow-stimulating injections to help my body recover enough to tolerate the chemotherapy.
And then came some really good news.
I received the results from my lumbar puncture last night, and there was no cancer found in my cerebrospinal fluid!
I cannot tell you how thankful I am for that news. I was praising the Lord!
I haven’t had my follow-up appointment with my neuro-oncologist yet, but based on these results, I’m hopeful that the next step will simply be to have the new spots in my brain treated with targeted radiation rather than needing an intrathecal port and chemotherapy directly into my CSF.
As for Eribulin, I was able to receive another dose last Thursday, followed by a bone marrow-stimulating injection on Friday. My neutrophil count was actually okay at the time, so we were hopeful the injection would help me stay ahead of the blood-count issues.
So you can imagine my shock when I went back this afternoon for more bloodwork and found out that my immune system is basically wiped out again.
All of my red and white blood cell counts looked awful.
I received another bone marrow-stimulating injection today to hopefully bring my white blood cell counts back up. I’m also praying that my red blood cell counts will recover enough to avoid needing a blood transfusion. I go back to the oncology office tomorrow for more bloodwork, and we’ll see what my body needs in order to hopefully get my next chemotherapy infusion on Thursday.
There are a lot of unknowns right now.
My body is struggling. The cancer is still fighting. And the treatment itself has been difficult. I have difficulty eating enough food and am definitely not getting enough movement in. Many days I just feel like moving from the bed to the couch and back. I did find, however, that the iron infusions helped drastically with the general fatigue and weakness, so I foresee more of those in my future. I am working on improving in my eating and physical activity specifically.
But I’m still here. I’m still fighting. And we are still believing in miracles.
I am so incredibly thankful for every person who has prayed for me, encouraged me, checked on me, sent messages, brought meals, and lifted our family up before the Lord. I know I don’t always respond or give updates as quickly as I would like, but please know that your prayers mean more to me than I could ever adequately express.
Right now, I’m taking things one day at a time—and trusting God with each one.
Thank you for continuing to pray.
We are still believing in miracles. ❤️
