Scan Updates

I Really thought I would be sharing different news today, but unfortunately, I’m facing radiation again 😩

The lung nodule we had planned to treat in January (which I ended up canceling because it had actually remained stable since the previous scans) has continued to grow again. Because of its proximity to my heart and major blood vessels, the bigger it gets, the riskier treatment gets. I therefore need to do radiation. Soonest I can meet with the radiation oncologist is Monday, and then we move forward with a plan.

The anger, grief, and despair I am feeling are all-consuming. Every hit with this cancer shit feels like a diagnosis all over again. I SO thought this was my turning point. That things were moving in a better direction, and I could take some time to distance myself from the intensity of it all. To feel a little normal again. To continue to heal, instead of adding more insult to injury. I have worked SO hard to heal! To learn everything I possibly can, get as many tools under my belt as possible, experiment, and address every corner of health I can in order to get better… but here I sit. Needing radiation again.

I don’t know how to move forward yet. My days are already consumed with trying to take care of myself. I don’t know how much more I can do. It’s already not sustainable. I don’t know where the balance is. I don’t know how to maintain hope in times like this. I feel like I’m barely living; all it seems like I do is try to keep from dying.

I’m so tired of only being able to live and plan in these small chunks of time, and even then, stuff can still completely go to shit. And yes, I know Everyone’s plans can go out the window, but I legitimately cannot safely plan anything anymore, and have to fear for my life on top of it all.

The positive news is that nothing new showed up on the scans, and the remaining lung nodules have essentially remained stable. I am aware of these good pieces of information, but right now, it’s really hard to get and maintain a grip on everything.

I’m feeling foolish and heart broken… maybe I’m crazy for expecting miracles. But I refuse to accept that this could take me down.

Answered Prayers!

Guess what! I got to cancel radiation!!! 🙌

I went through the full simulation process yesterday, ending the day with a chest CT. I didn’t get the results until evening, and then had to wait to talk to the radiation oncologist today. I’m still waiting to hear back from my oncologist about next steps, and have received some confusing and unclear information about the details, but here’s the long and short of it: Over the last 6 weeks 1 lung nodule has continued to grow, 1 has DECREASED in size, and the rest have remained stable 🤯 This is typically unheard of without traditional aggressive therapies, so we are Incredibly excited, hopeful, and cautiously optimistic! The self-experimentation and hitting my protocol hard seem to be working!!! 🙏🤞

I asked the radiation oncologist what she thought about radiation at this point, and she essentially said that because the nodule isn’t a big threat right now, I could cancel treatment… so you better believe I did! 😂🥳

I still have no idea when I’ll go in for my next scans, or if I need to consult with anyone else in the near future for the one nodule that grew, but for now, I at least know that I do not need to do radiation next week! 💃🏼

I couldn’t get an appointment with my oncologist until the 31st, so it may be a while before I have any additional details to share. My head has been spinning all day… trying to grasp reality, but for once, in a good way… I’m very excited to (at the very least) be able to delay treatments. But I’m working for Total Healing, and will continue to do the work to get there! I know your prayers, positive energy, and support are all helping me get there, too!

Thank you all! Thank you, God! 🙌💖

Radiation Plans

Tomorrow is radiation simulation day. I’ll head to Mayo for radiation planning and get an updated chest CT since my previous scans were already 6 weeks ago. The rad onc wants the most up-to-date imaging before beginning treatment.

The current plan is to start radiation next Monday, continue daily on weekdays, and finish on January 31st, for a total of 8 treatments. To say I’m dreading it is an understatement.

I’ve been pushing hard with my protocol, praying and hoping every day that it’s Miracle time. That the scans will show shrinkage of lung nodules and I can call to cancel treatments. Am I crazy? Maybe. But I think I’d be crazier to not try, to not hope and pray for healing.

I’ve been doing my very best to stay present with my kids and husband. To distract myself and not spiral every single day while feeling defeated and overwhelmed. I’m struggling with a lot of continued issues from surgery and spinal radiation… but feeling a little bit stronger overall… which is a big reason I don’t want to do any more treatments! I just want to continue to get and feel better.

But I want to live. So I will do what I must to make that the most likely outcome.

I’ll update later this week if anything changes, otherwise you’ll probably hear from me next week. Thank you in advance for the prayers and support! 💜

Scan Updates

Unfortunately, not the good news we were hoping to receive today. The chest CT shows that the 5 untreated lung nodules have continued to grow. One in particular has grown more rapidly than the others, and is now the largest of them all (11×10 mm). It is near the heart, airway, and major blood vessels, so safe treatment options are limited.

At this point, it sounds like thoracic surgery would recommend against surgical intervention, we’re waiting to hear from interventional radiology (but it is likely they will say treatment is too risky to the area), and radiation oncology thinks we could treat with SBRT again (same type of radiation I had to the other lung nodule & my spine).

I also have the options of oral chemo (no, thank you!) or waiting and watching… as much as I would love to do no treatments right now, if the nodule continues to grow at its recent rate, we risk it affecting the heart/airway/blood vessels, and therefore making treatment even more challenging.

Radiation would involve 8 treatments since they have to be extra careful with the location. Lots of potential side effects…but it doesn’t really seem like I have much for options.

The scans showed No other new concerning changes, which is great!… But right now I’m trying to wrap my head around all of this. I don’t want more treatments 🥺😢 Worst of all, I have to endure the treatments, add to the recovery process, all the while knowing there are other nodules present, growing, and also needing treatment 😩

I now have to wait to hear back if anyone else has input about plausible treatment options. Otherwise, I’ll likely be moving forward with scheduling radiation for after Christmas.

I’m trying not to spiral into the deep, dark abyss right now… I hate cancer and I’m so tired of all of this. The constant fear and overwhelming grief are a constant in my life now. I know it’s going to take time to come to terms with all of this… I still haven’t come to terms with the whole spinal saga, to be honest.

I don’t have any uplifting thoughts or words of hope at this time… I’m just going to continue praying and working for a cure.

Scan Update

I am sad (and angry) to say: Same story, different day. The scans showed new and enlarging pulmonary nodules again.

All of the nodules previously seen have grown. I also have a new one in my left lung. Previously, all of the nodules were confined to the right lung. The oncologist said there are too many now to hope for surgery as an option, unless of course I develop symptoms or there’s a direct risk to where any of them are growing. It’s sounding like all they will have to offer me is chemo if the nodules continue to grow. Unfortunately, the likelihood of chemo working isn’t great either… LMS doesn’t respond well to many chemo drugs. In fact, they don’t even offer chemo for LMS patients in some countries because the likelihood of success is so low.

The anguish is all-encompassing. I am devastated and ANGRY!!! I still cannot wrap my head around the fact that it is 2023 and we still do not have better options for cancer treatments. I have been busting my ass researching and trying all sorts of alternative therapies in the hopes that Something will work. Conventional medicine certainly doesn’t have a fix. It’s infuriating and scary as hell. It’s also incredibly disheartening to see that, despite my best efforts, the cancer continues to progress.

I know that maintaining hope through all of this is vitally important, but on days like today, I struggle to find or hold on to any.

I appreciate all of your continued prayers for me and my family. I’m going to continue researching, consulting, and experimenting, just as I have been doing. Sadly, it feels like my remaining options and time keep dwindling with each unfavorable scan result.