More Radiation Needed 🥺

This past week has been incredibly stressful as we’ve had to navigate yet another shit storm of cancer.

I need radiation to an aggressive lung nodule in my left upper lobe. We’re going to try proton therapy this time, in the hopes that it will cause minimal collateral damage to my heart and other vital structures. We’ll also be attempting every other day treatments, and playing around with my meds to see if we can avoid a terrifying cardiac episode like last time 😓 The plan is start October 30 (the day before Sloane’s birthday 😢).

I’ve been exploring some new possible ways to strengthen my system in preparation for more treatment, and desperately trying to keep my mental health in check. Terror, grief, despair, anger, sadness, depression, anxiety, panic… they don’t even begin to describe the emotions constantly swirling in my mind. I keep saying, no human is meant to deal with this much trauma for this long. Knowing that the trauma and stress are further weakening my ability to heal is a complete mind F*! It’s all just a swirling labyrinth of shit.

As usual, I am inundated with more possible avenues of action. Drugs, herbs, protocols, therapies, confusing and conflicting research every which way… the stress of it all is beyond overwhelming. And NO ONE knows the answer. But the overwhelm needs to be managed, because that is also delaying healing 🙄🙄😤

Complicated and frustrating don’t even scratch the surface. This is beyond maddening.

I am asking God, the Universe, my angels, ancestors, and my prayer warriors: Please lift us up as we move forward through the continued unknown. I want to Heal!!! I am meant for more!!

Every day I affirm: I am healthy. I am whole. I am cancer-free.

I believe there are better days ahead. I am trying to allow, rather than chase, the positive vibrations and outcomes I desire. But fear rears its ugly head and I struggle to keep moving forward.

None of this has gotten easier. The trauma and terror have become familiar, but they are not my friends. My mind and body are trying to protect me.. but at what cost?! I want to live. Heal. Flourish. Thank you God, angels, and ancestors for continuing to guide the way ❤️‍🩹

June/July Scans Update

I haven’t been able to muster up the energy to write a detailed update, so this will be pretty brief.

I had my scans and appointments with Mayo over the last couple weeks. Biggest takeaway right now is that I do Not currently need treatment. However, we have to continue to monitor things closely. There is a 2.7cm currently indeterminate lymph node versus metastasis in my left axilla (armpit), and 1 of the lung nodules grew 4mm since mid-April. Thanks be to God, the remainder of the lung nodules have remained stable, and 2 of them actually decreased slightly 🙌

I am still Majorly struggling with debilitating fatigue, shortness of breath, and intolerable to activity. I’m down 20 lbs now and doing everything in my power to get calories in and keep them in. Will be seeing cardiologist again and PCP this next week.

Feeling immense relief and gratitude that I don’t need immediate treatment, and hoping and praying I will get better soon so that I can actually enjoy the summer and do more things that will aid me on my healing journey.

I appreciate your prayers and well wishes. It has continued to be a scary, lonely, and difficult time since radiation. I’m doing my best to focus on the wins here, rather than the unknowns, but it continues to prove challenging each and every day. Stage IV cancer sucks beyond belief, and I’m eternally grateful for my support system 💜

Doing My Best

I have tried to write a meaningful post nearly every day since getting home from radiation, and I still don’t quite know what to say. I don’t have the capacity, nor do I think it appropriate, to lie. However, telling the truth will likely result in people checking in with our family and friends to see if I’m ok, so please let me preface this by saying: I am doing my best. My providers are aware. I have probably tried or looked into the majority of suggestions people have. This is simply what my life is like right now. I am posting because I know people are concerned and/or wondering.

I feel unwell. Physically, emotionally, mentally, and spiritually. It is 2:24pm as I draft this post, and I have not been able to get dressed, do anything with my hair, brush my teeth, or do Anything other than wash my face, eat a few things that didn’t require prep work, and do a few stretches today. Every time I get up to, say, use the bathroom, I am met with this overwhelming feeling of exhaustion, discomfort, and an inexplicable feeling that I Need to sit back down. I’m lightheaded and nearly pass out with standing up, 10 hours in bed isn’t enough, I have horrific nausea and an inability to eat more than a few bites of food without my body rejecting it. Since getting home from radiation less than a month ago, I have unintentionally lost approximately 15 lbs… thus far. I know most of this is muscle mass because I can’t consume enough protein to maintain it.

Every single day is a struggle. When I have appointments, I have to painfully force myself to do things in order to get out of the house, but typically feel worse because I have to keep ignoring my body’s pleas to sit down and stop doing. Once home, I typically cannot get off the couch for usually about 2 hours. Some days I feel better in the afternoons and have maybe 2-3 hours where I can get a few things accomplished. This is usually the time of day when I either get dressed for a few hours, or change into a new pair of pajamas. I’m sure some of you are thinking: That sounds great! Sit around all day in your pjs?! Sure, there are certainly worse ways to spend your day. But this has become my Life as of late, not because I Want to, but because I have no choice, and I am very sad, scared, and depressed. I absolutely cannot tolerate any further aggressive treatments right now. I can’t even tolerate eating food to keep me going each day.

I had another echo and met with a new cardiologist a couple weeks ago. My heart function appears to have declined further since radiation, which is no surprise given what happened. However, before deciding how aggressive we’ll be with treatment, I need a cardiac MRI to ensure we have the most accurate function of my heart. They only have 1 machine and are booked out, so I won’t be getting that done until end of August.

I am in pain, short of breath, intolerant to exercise, lost in brain fog, struggling with horrendous exhaustion, unable to maintain a comfortable body temperature, and still dealing with all the limitations from spinal surgery and radiation. I don’t think it’s necessary to detail it all out, as I’m sure you can begin to imagine how and why my mental, emotional, and spiritual health are all struggling as well.

My next scans and appointments with Mayo are stretched out over the course of a week, which is incredibly annoying… my appointments will be from June 28 through end of day July 3. Great way to head into the holiday weekend here in the U.S.😒😤🙄

I realize this post probably doesn’t sound a whole lot like me… but I don’t feel much like myself anymore anyway. My poor husband and kids have had to watch me struggle to get through each day, to cry and cry because I can’t do the things I want, or even Need to do, and be ok with everything changing More because mom can’t tolerate much of anything. I absolutely Hate having to take life day by day. And after 4.5 years of being forced to do that against my will, now I have to take things hour by hour, sometimes minute by minute. I do not have the luxury of planning anything for the future. As human beings, we thrive on having things to which we can look forward… I have fear and terror of what could happen. With a teeny tiny sliver of hope that I am Really struggling to maintain.

But every day, I get up with the commitment to TRY my best, despite. Hoping and praying that things will start to get better. That I will get better. That I will shock everyone and heal myself.

I don’t know what tomorrow will bring.. I don’t even know if I’ll manage to get dressed today. I am annoyed that it’s taken me an hour to write this post… I forget what I’m saying and doing while I’m in the process of saying/doing, so writing, reading, and talking are all more challenging now, too.

I want to post more, to be helpful to others, or perhaps even inspire.. but lately I can barely help myself, so I guess that’s where I need to continue to focus my energy and attention for now.

Maybe someday soon I’ll figure out how to manage this struggle better, but for now I need to preserve the little bit of energy I have.

Thank you for your prayers. I appreciate them and you. I will continue to pray for and affirm: Better days ahead! 🙏🌻

1st Week of Radiation Complete, with Trip to Emergency Department

Radiation 5/8 completed, and I ended up in the emergency department shortly thereafter 😫

I was feeling more fatigued heading into treatment this morning, but I knew that could be expected. I spoke with a nurse and the radiation oncologist after treatment because I was feeling more short of breath. It quickly escalated, and while my oxygen saturation remained perfect, my heart rate and respirations were increasing and I started to become dizzy. Once they had me lie down, my left arm went numb, then my right, then both of my feet. I felt buzzing, tingling, and shaking everywhere in my body, but I couldn’t lift or move my arms or hands.

They called a code, ran a bunch of tests, and sent me via ambulance to the ED. A CT angio and echo were essentially normal. The EKG showed some abnormalities, and given my history of chemo-induced cardiomyopathy and heart palpitations, I’m now stuck wearing a holter monitor for the next month.

I was thankfully able to come home tonight, but I am beyond exhausted. I’m so tired of being so scared all the time. I’m in so much pain from the week as it is, now I had to miss my chiropractic appointment, and my body’s been put through the wringer today… when it’s already trying to heal from radiation 😭

We’ll have to see how the weekend goes, but they’re still planning to continue treatment next week, while monitoring me closely. I will do my best to rest up this weekend, but there’s always so much to catch up on after getting home, and of course, I want to spend quality time with the kids.

I’m grasping desperately for hope, trying to find faith through the fear, but this monsoon of Shit can go away already!!!! I’m finding it very difficult to move through the anger and grief from all we’ve been dealt these last few years. Enough is enough!!!

I am ready for my miracle 🙏