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.

Celebrating the Completion of Spinal Radiation

I was finally feeling physically and mentally ready to celebrate my radiation victory last night. Brandon and I went out for dinner at a lovely little Italian restaurant not far from home. We had a beautiful night for it! (We were also surrounded by sunflowers… tell me that isn’t a good sign 🌻).

While I’m still struggling with a lot of side effects (some of them continue to worsen), I was determined to do something special.

It’s been difficult to imagine celebrating anything when no one at my appointments has seemed to acknowledge much of the wins, but I’m beginning to understand that it’s truly no one’s responsibility but my own. I get to decide what counts as a win and how I choose to celebrate it✨ It would be nice if the staff cheered me on, but sadly that doesn’t seem like the world of healthcare right now.

Since I haven’t been able to ring the big bell at the clinic, I decided to buy myself a little hand bell, and will be using this as my “victory bell” whenever I feel like celebrating. It’s tiny, and seems kind of silly. But it also seems silly to not somehow acknowledge my triumphs. Honestly, each day of thriving with a Stage IV cancer diagnosis is a victory, so I know I should be acknowledging and celebrating more of my wins. I focus enough on the hard, uncertain, scary, and frustrating parts… this will be my attempt to bring more focus to the positives 🙏💜

Cervical Spine Radiation Complete ☑️

Cervical spine radiation is complete!

Sadly, the final days of these radiation treatments are a bittersweet, somewhat hallow victory. I still have cancer inside me. I don’t know what the future will hold. I watch people come out, ring that bell, and we all clap and cheer. I always cry. There’s no fanfare when I walk through those doors after treatment. No bell ringing. No cheering. Just me, fighting back the tears at reality.

As the days have progressed, it has become more difficult to walk. My left leg used to be my strong one, but now it’s buckling, too, which means I’m a bigger fall risk again. I’m walking much slower and am having trouble with any uneven terrain (even with the walker). Voice is getting hoarse. Dry mouth. Irritated/swollen throat. Swollen, sore neck and lymph nodes. Stiffness. Sensory changes in my legs. The numbness in my right arm and hand are getting worse (I was even having trouble holding up 3 fingers for this photo). Fatigue from treatment and lack of good sleep. Steroids are keeping me from sleeping well… and it’s all adding up.

Once again, I’m increasingly helpless and less independent. It’s been a tough week, to say the least. I’m glad to be done with this. But man, does cancer suck.

Thank you for your continued support and prayers. I certainly appreciate them all as I head into yet another period of recovery ❤️‍🩹💜

Radiation 2 of 3 Complete

Radiation 2 of 3 completed! Tomorrow will be the last day.

I woke up with severe swelling in the lymph nodes of the front of my neck. No other new or worsening symptoms suggestive of an upper respiratory infection, but scary, nonetheless. It’s been tender to the touch, hurts to move my head any which way since the skin pulls, and there’s a constant burning sensation in the area. I wasn’t able to get an answer for potential causes until meeting with the radiation oncologist this afternoon. She showed me the treatment images, and the submandibular glands do get a low dose of radiation, so they are likely angry right now. Mystery solved, but symptoms will worsen with each treatment 😩 I sure hope they get better quickly!

I’m also starting to experience some throat irritation, dry mouth, and just general worsening of neck pain and neuro symptoms (denser numbness, increased tingling, burning, pain, etc).

Overall, just feeling pretty crummy. So sick of my body getting beat up and not being able to heal and recover in the ways I want and need. Hoping for some better sleep tonight, and manageable symptoms going forward… Seems sad to have such a low bar. I’d love to feel fantastic and healthy and vibrant! 🙏 and be cancer free!

Spinal Radiation 1 of 3 ☑️

The first of 3 radiation treatments to my cervical spine is done!

This experience is disturbing and traumatic, to say the least. I was fitted for my mask on Monday, and had no idea what was truly in store. I had to lie through a treatment simulation And an awful MRI while I was trapped in this device (the MRI also required the head cage, so it was constant claustrophobia throughout it all). It’s like something out of a horror movie, in my opinion. My head, shoulders, and upper chest are all pinned beneath a tight, hard mask, and I’m unable to move at all. My forehead is smashed so tightly in the mask that it leaves marks on my face for over an hour after it’s off. I can’t open my eyes while it’s on. I have a tiny nose hole through which to breathe. And I have to hold perfectly still without completely panicking. Sounds great, right??

Since I had no warning on Monday, I didn’t have a chance to mentally prepare ahead of time (or take any medication to help calm me). Now I have a prescription to take the edge off before heading into treatment, but it’s still an extremely unpleasant experience. I think anyone who’s been through head or neck radiation can attest: This is an unpleasant and scary ass process, even if you don’t have a history of claustrophobia.

The plan is for 2 more sessions this week, and then follow-up scans in 3 months.

I appreciate your love and prayers for peace through this process, and for a good outcome! I’ll plan to update more tomorrow 💜🌻

Scan Update

It’s been a stressful and emotional couple of days with scans and appointments, but I’m finally feeling like I can breathe a tiny bit better now. Yesterday I had a spinal MRI, CT of the chest/abdomen/pelvis, and met with the radiation oncologist who treated the lung nodule back in May. Today I met with my oncologist.

Our day yesterday was quite emotional because when we left the appointments, the doctor didn’t have all the information. Based on what we Did know, it sounded like there was a possibility of recurrence in the spine, as well as several new lung nodules. If the tumor had come back in the spine, there was a good chance I would need to have surgery Again, in addition to radiation, and then we would discuss what’s next for the lungs.

We left her office feeling completely defeated and devastated. It took every last ounce of my willpower to not completely collapse on our long walk back to the car. As soon as we entered the parking garage, I fell apart. I cried and cried and held onto Brandon for I don’t know how long… cars passed and the world went on around us while our world was seemingly falling apart. After pulling ourselves back together, I got a notification that the final chest CT report came back, and it showed NO definite new growths. The lung nodules that have been present have continued to grow but at a similar rate as before. And the lung nodule that was treated back in May has responded well to the radiation! While not great news, it was much better than what we were originally told.

Ok. So now we were looking at “only” the possibility of really bad news with the spine. Since my surgery was with a different health system, we’d have to wait until the images could get pushed through, and for the team to review and compare to yesterday’s scan.

This morning we met with the oncologist. She said that she talked with the radiation oncologist and surgeons on the team who reviewed the post-op MRI images and yesterday’s results, and there is NOT concern for recurrence at this time! The area they were uncertain about is “just” post-operative changes in the spine. Therefore, they do NOT think that surgery is warranted again! 🙌 Everyone on the team does think that radiation is a good idea, however, to make sure things are “cleaned up” so that surgery isn’t necessary again down the road. The surgeons think that my spine is still healing, but healing well, which was good to hear.

So at this time, it sounds like the plan will be for radiation to start the week of the 18th. I’m waiting to hear back from them about all of that. Treatment will increase inflammation in an area that is already very inflamed, which means pain and deficits are likely to increase for a while. Additionally, because of the location, I will probably have an extremely sore throat and hoarse voice for a while. They’ll give me medications to help with it. And, of course, worse fatigue! Yay!… 😒🙄

The brightest of spots is that the abdomen and pelvis still look good, so no changes there!! After all of this, the plan is to rescan everything in about 3 months.

Still with me here? Ugh!! It has been a fricken rollercoaster, and I’m over it! I’ve never been a fan of rides!

I’m going to do my best to enjoy the weekend with the kids and Brandon, knowing that with my already limited abilities, I have a lot to try to get done and prepare before radiation starts again. You all know I will do my best to continue updating as best as I can. I appreciate your patience with these updates, as sometimes I really need to rest (physically and mentally) before I can write everything out… aside from taking care of my responsibilities as a human and mom 🙃

Shoutout and thank you to the BP Cancer Group for my t-shirt and all of their support over these past few years. It’s such a fantastic group from my little hometown, and their annual cancer auction is actually going on this weekend! (www.bpcancergroup.org)

Love to you all! Thank you for your continued support. I’m praying and working every day so that I can someday share my miracle story with you all 🫶💜