Tag: POTS

Lots of Updates; In the ED Currently ❤️‍🩹

I know people have been anxious for an update, and I hope you’ll understand why it’s taken me so long to post one. 

Radiation to the large liver mass was, put simply, too much for my body. I ended up making it 3/8 of the way through the planned treatment before my radiation oncologist and I decided to call it quits. I was so unbelievably sick and in so much pain 24/7, I could literally barely function. Since the only other options I am being offered from Mayo and the U of M are systemic therapies, he felt that if I could only tolerate one thing, I should try to pivot to that. 

I made the very difficult decision at the end of November to quit radiation and take steps to begin systemic therapy. After weighing all of the (honestly, terrible) options, I have opted to try an oral targeted therapy called pazopanib. It isn’t a chemo, but carries many of the same awful risks. The biggest difference is that it is something I’d take on my own every day, and can therefore stop on my own, if needed/desired at any point. Would you believe I’m still waiting on the medication a month later?! Gotta love the world of prior authorizations, specialty pharmacies, and red tape 🙄

During the waiting period I’ve tried my best to recover from the chaos caused by radiation and continued tumor growth elsewhere. I FINALLY after may months found a pain doctor willing to work with me (thanks to connections through my amazing chiropractor… again, the lovely world of medicine). We’re in the process now of trying to figure out what I can tolerate and what works for me. 

Then, a few days prior to Christmas, our house got hit with COVID. We managed to avoid it for nearly 6 years, but it reared its ugly head and ruined our Christmases. I was honestly so sick I barely remember watching the kids open their stockings and gifts at home. I can also say that was the sickest and worst I’ve ever felt in my life: even more than when I nearly died from chemo several years ago. 

Thankfully, Brandon and the kids recovered well and quickly, but it’s been a different story for me. As I’m typing this, I’m in the emergency room. I’ve been watching my oxygen levels very closely at home the last couple weeks, and it’s been insanely difficult for me to do anything other than sit on the couch. Eating, talking, bathing, dressing, walking to the bathroom.. have all left me short of breath, coughing, heart pounding, and feeling like I could pass out. I was doing supplemental oxygen at home, but as of this morning, it was no longer enough. 

Here at the ED I found out I am severely anemic (hemoglobin of 5.6 🤯🤯🤯), and it looks like I have the start of a bacterial pneumonia in my left upper lung. There are a few other things that need to be watched, but for now, we’re addressing the anemia and pneumonia. 

So now I’m getting oxygen, IV antibiotics, fluids, as well as blood transfusions, while I find out which hospital has room to admit me 😖 The joys of a terrible cold/flu season. It sounds like it’s too soon to tell, but I may be stuck in the hospital for a few days, all depending on how well I’m tolerating things and improving. 

Especially now, we really really appreciate your prayers and positive thoughts sent our way. Still praying for a massive miracle, and the first step is getting well enough to get home soon! I absolutely despise being in the hospital and being away from the kids. I’m already looking forward to my own bed, being free from all these cords, and sitting on a comfortable couch surrounded by my family. 

7 Weeks Since Surgery

It’s a little hard to believe, but it’s been 7 weeks since surgery. Recovery is going ok, but I’m still trying to come back from radiation and the cardiac event in April, so the overall progress has seemed very slow. 

Following the traumatic events of this spring/summer, I found myself in a near-constant state of panic. I was experiencing panic attacks daily, crying multiple times per day, and constantly stuck in an unending doom spiral. The coping mechanisms on which I’d learned to rely over the last few years were no longer seeming to help, and every single stressor became just another insurmountable trigger. I managed 4.5 years of cancer to not need daily medication to manage my mental health; I have had detrimental side effects in the past with all of the meds I’ve taken, so I was very hesitant to even consider trying them again. However, I finally reached a point where I realized I could no longer responsibly try to manage things on my own and had to fight to get prescriptions for new meds that weren’t going to carry the high risks of those I’ve tried in the past. So far, I am thankful to report that the medications are helping, though we are still experimenting and working to find the best current regimen for me. 

Medication alone has never been sufficient for me when it comes to my mental health. In addition to self-care/lifestyle factors, I have seen several therapists over the past few years. Unfortunately, I discovered this year that even long-term ones were no longer serving me in the ways I currently need. I finally found a therapist I am comfortable with again, and I have been seeing them 1-2 times/week now. 

Since surgery, I have had several other important scans and appointments. Thankfully, the large ovarian cyst and accompanying symptoms have resolved. An MRI of my right (non-operative) shoulder reveals a complete tendon tear in my rotator cuff, and I will likely just be continuing to try to heal that through physical therapy at this point. 

I had a cardiac MRI last month to get a more accurate measurement of my heart function following the events back in April. Sadly, the MRI shows my left ventricular ejection fraction was at 44%, which places me in the “mild” heart failure category now. Before chemo in 2019, it was 55-60%, and before this last round of radiation, it was 50-55%. The cardiologist has started me on 2 heart failure medications at this time, but, because I’m also struggling with POTS symptoms and low blood pressure, it’s an extremely tricky balance (all of the possible medications for this type of heart failure lower blood pressure, and one of them is also a diuretic, when I’m already struggling to keep my fluid levels higher due to POTS). 

I’ve also been meeting and scheduling consults with additional providers to further expand my integrative approach to health and healing. I am learning a lot, trying my best to not get Too overwhelmed, and working hard to remain flexible and hopeful amongst all the unknowns. 

Over the last several weeks I have been doing my best to prioritize my mental health, peace, and quality time with Brandon and the kids. I have been limiting my time and influences on social media, making space for intentional solitude, and trying to do things on my own timeline without judging or shaming myself for doing so. I’m learning to allow rest without guilt and just generally try to free myself of unrealistic expectations (typically self-imposed). While I have been working on it for years, I am focusing hard on prioritizing positivity, practicing affirmations, and minimizing and better managing negative energy – from both my own mind and external sources. 

Needless to say, it’s been a busy 7 weeks since surgery. As I’m feeling up to it, I will maybe share some photos of recent events since surgery. We had a nice little (delayed) 11th wedding anniversary celebration, Sloane is back in soccer, and we’ve been trying to do some of our little family traditions again. I’d love to say I’m feeling so much better, but scans are already coming up again in a couple of weeks (how??!!), so I’m having to work extra hard at avoiding the doom spirals right now. 

As always, thank you all for your care and continued prayers 💜