Radiation #6 Complete

Bittersweet completion of radiation treatment #6 yesterday. As I tried to awkwardly hold up 6 fingers in the dressing room mirror, tears welled up in my eyes. I didn’t get much sleep the night before, as I had learned right before bed of the sudden passing of a very important person in my life.

Renee Felchle Burns was one of my biggest supporters and cheerleaders these past few years, but her impact went back to my childhood. Renee was one of my teachers, and had an incredible influence on my life. She saw something in me few others did or bothered to mention. To this day, I still have some of the work she graded because her words of encouragement and praise were so powerful. When I began documenting my journey with cancer, Renee immediately understood and appreciated the cathartic nature of being able to write it all out, and encouraged me to continue to do so. While it has helped me keep people up to date more efficiently, the writing process is also therapeutic, and she recognized that.

As many have probably witnessed if you’re on Facebook, Renee was a consistent presence in my comments, offering her love, praise, support, and prayers every single time. There’s no way to know how many prayer chains she initiated or how far a reach her shared posts had. She would check in on me when I’d be silent for longer periods, and I could always feel her true love coming, no matter what.

Every day as I lie locked onto the radiation table, I feel my angels and ancestors surrounding me. I keep my eyes closed and envision their love enveloping and protecting me during the long process. Yesterday I felt a new strong presence in that room. While I will Greatly miss Renee’s messages and comments on my posts, I know her support and love are unending, and that provides me a small amount of peace.

I also know that so many people are feeling her loss right now, which speaks to the loving person she was. I’m praying for Renee’s husband, family, friends, and everyone impacted by her passing. She was truly an incredible woman, and I am blessed to have known and loved her ❤️

Scan Updates 💔

This past week’s scans did not go as we had hoped. Far from it, actually. Despite my best efforts, the cancer has progressed. I now have 2 significantly sized lesions in my liver, and a couple more questionable spots elsewhere. It’s been a difficult week of extremely difficult discussions and emotions.

I had my 3rd radiation treatment on Thursday. Once this round is complete (still currently scheduled for a total of 8 treatments), the road is murky. Due to the sizes of the liver lesions, they are not good candidates for interventional radiology procedures or radiation. I am awaiting a surgical consult with the surgeon who did my last abdominal surgery. While I have no interest in going through a 3rd massive abdominal surgery, if these spots are even resectable, it may be necessary.

I met with my oncologist yesterday to have a discussion I’ve been fearing for years. We have reached a difficult point in my health care plan: whether or not to do chemo again. There is no cure for leiomyosarcoma. I have known this all along. Every patient is different, however. Some need a surgery or a few treatments, they reach stability or a state of having no evidence of disease, and they can stay there… sometimes for years, sometimes indefinitely. I have always intended to be one of those patients. Unfortunately, these last several months have shown acceleration of disease I’ve never had, and it has continued to get worse.

Conventional oncology here in the US can offer surgery, radiation, chemo, and sometimes interventional radiology procedures to remove, slow, or stop lesions. But they have no way of making it go away for good. None of these treatments get to the root cause, nor can they attack circulating or cancer stem cells. It’s essentially sustaining a game of whack-a-mole as long as you can. The final Hail Mary can sometimes include chemo. We discussed this in depth yesterday.

In my case, the goal/hope with chemo would be to stabilize existing spots and hopefully stop new spots from popping up. This is best case scenario. There would be a small chance of decrease in size for existing spots, but it isn’t the usual outcome for LMS patients. None of this is news to me, but it was good to get confirmation and better understand the realistic expectations.

If there was stability or shrinkage and I was tolerating the treatment, then I’d just stay on it indefinitely until it stopped working or I no longer tolerated it. So, essentially, once you get on that chemo train, you stay on it until it derails, then try another train, until that one derails or you don’t tolerate it, etc, likely indefinitely. Meanwhile, the train is dragging you beneath it, beating you up the whole way… and after how poorly I tolerated chemo the first time, and how weak I have already been these past several months, the idea sounds terrifying and frankly not safe.

My oncologist understands why I am hesitant to do it, and said that whatever I decide, she will support me however she can and that she wishes she had more and better options to offer me..

I don’t know that I want to board the train. I have to weigh the known high risks with the possibility of stability, but only with continued use, and only if I tolerated it…

It has very much come to the point now where I need to figure this out on my own, receive God’s blessings of a tremendous miracle, or this may be the beginning of the end.

Brandon and I have been working hard together to review my protocol, going back through all our notes and prior ideas… things I’ve tried that could be modified or restarted, things we hoped I wouldn’t need to resort to, continuing to think outside the box and prioritize as best we can. I’ve been going back and forth with my integrative team, bringing new providers and therapies on board for the last few weeks… we are feeling like we still have some solid ideas that all have research and/or strong anecdotal evidence to support… but it is scary as F!!!!!!!! And expensive!! Insurance doesn’t pay for wellness, unfortunately 🙄😤. And the stress?? There is no way to describe it.

These past few weeks my priority in choosing therapies and regimens has been Wellness. How can I not just “attack” cancer but also Deeply HEAL my body and mind! I continue to read stories of miraculous remissions to give me a dose of hope to keep going. I look at my husband and kids and it GUTS me to think about leaving them behind. So through the tears and heartbreak I keep researching, keep reading and experimenting on myself. Praying to God, my angels, and ancestors to Please guide me! Please heal me! Please help me so that I can be here, healthy, to live a long life with my family.

I am terrified of the possible pain and suffering, but I’m not a stranger to that. I don’t need to be told I’m strong. I Know I am. And I don’t want to have to be! I’ve been strong long enough!! But the thing that haunts me the most is the thought of leaving my family when we still have so much life to live together.

I am not asking for anything right now, but pretty please don’t put the onus on me to tell you how you can help.. I so VERY much appreciate the offers, but in all honesty, I can barely get through the day, and I don’t have the mental capacity to try to think anymore than I already need to. If it moves you, please join me in prayer. We are continuing to spend a lot of money on experimental therapies. We are driving long distances most days so are going through a lot of gas and wear and tear on the car. I am trying to eat as healthfully as possible, but our schedule is chaotic and requires immense flexibility, so life is rarely plannable for us anymore.

If there is a supplement or medication or protocol out there, I have likely tried it and/or am doing it… Brandon keeps reminding me that if beating this were easy, they would have figured it out by now. I’ve been trying to get beyond cancer for 5 fricken years. I am beyond exhausted and hanging on by a thread of hope most of the time. But I know that that thread, however thin, will keep me working so that I can stay here with my husband and kids for as long as I possibly can.

Proton Radiation #2 Complete

You think this Election Day is stressful? Try adding in radiation treatment and More scans on top of it all 😭 Stressed to the max today and doing my best to relax in whatever possible ways I can.. including a high dose of Valium 🥴 Treatment #2 is done, and now I’m waiting for end-of-day CT of chest, abdomen, and pelvis. Planning to meet with the rad onc again on Thursday to discuss the scan results.

Please send up those prayers and good vibes for great scan results and peace while I wait for them. The collective anxiety of our country can be felt today, and I hope everyone is doing their best to take care of themselves and each other ❤️

1st Proton Radiation Complete

I finally completed my first proton radiation treatment today. It’s been a rough week with continued unexpected hurdles. There was unnecessary stress simply getting insurance approval for this type of treatment. Then once that was figured out, we went down to Rochester on Wednesday prepared to begin, but the pre-treatment scan showed the lung mass grew and changed enough that the whole plan needed to be reconfigured. I have been devastated and disheartened. How could the stupid spot change That much in less than 2 weeks?! So we were sent home after I’d already been locked into the table and mask for a painfully long time. Unfortunately, they weren’t able to get the new plan recalculated for today’s treatment, but in talking with the radiation oncologist, it seemed to make more sense to just start attacking what we Could to avoid further delays. By next Tuesday, we should have the updated plan ready to go for treatments going forward. At this point I’m not sure how many total treatments I’ll need. The original plan was for me to be done on November 18th; now I’m not sure. The schedule is such a mess, it changes all the time, and it’s making it nearly impossible to plan the hundred other appointments I need to squeeze in, not to mention all the driving back and forth, the usual to-dos, and trying to spend time with the kids… oh, and, rest?!?

I want to be done with oncology. Forever. I want this all to be a distant memory. To be healed physically, mentally, emotionally, and spiritually. To be living a life outside of constant terror and fear.

In the meantime, I’m diving into some aggressive healing therapies I haven’t tried yet. Cost and time have been the biggest barriers, but damn it all to hell at this point! I want to live!! I want to heal!! I’m doing Everything I can to be here as long as I possibly can, to have a Good quality of life, and Enjoy it with my husband and kids!

We appreciate your prayers and support for peace, healing, calm, love, and divine guidance as we continue this journey 💜

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 ❤️‍🩹

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 💜

Made it Through Surgery!

Made it through surgery and am back home! Dealing with quite a bit of pain, soreness, and grogginess still. Overall, feeling relieved that it’s over, the mass is gone, and that I am still able to use my left arm and hand (tho currently limited from the pain and bandages). I’m not even 100% sure where the incision is, exactly, as the huge bandage is covering it all up. Have to keep this on for 5 days, then replace for another 5 days. The mass was in the axilla, kind of against the chest well and scapular muscles. It was pressing on the brachial nerve plexus, so I’m very hopeful that these awful nerve symptoms will improve as I heal 🙏🤞

The surgeon wasn’t able to locate the small scapular spot that showed up on the most recent MRI, so we’ll just have to watch that area and pray it is nothing and goes away on its own 🙏

Also still dealing with pain and discomfort from the ovarian cyst, but have had some moments of improvement amongst the pain, so also praying that resolves on its own! Still trying to get follow-up coordinated for that.

I really appreciate all your prayers, well wishes, and check-ins. Hoping I sleep well tonight! Last night only afforded me about 3.5 hours of sleep 🥴

Love to you all!! 🩷

Surgery This Week & Many Unknowns

The celebrations and little joys of summer were short-lived.. I only got a couple weeks of feeling human again before I ended up in the emergency room twice in the last week, with lots of unanswered questions and a current plan for surgery this Thursday 😩

The “indeterminate” spot in my left axilla from the July 1 scans has grown quite a bit during the last few weeks, pressing on my brachial plexus and intercostal nerves, causing quite a bit of pain and nerve symptoms. There is also another new, suspicious spot on my left scapula. The hope is to have this all taken care of with surgery on Thursday.

I had to go back to the ED yesterday because of worsening pelvic and groin pain, to find out I have a 6cm ovarian cyst 🤯 After a verrrrrry long day, ovarian torsion was reasonably ruled out and I was allowed to go home.

I’ve also been having new pain in my right axilla/shoulder, but they couldn’t do an MRI yesterday, so waiting to hear back when that can be done.. and need to follow closely for the ovarian cyst (including more imaging and probable consult with gyn-onc), meanwhile praying that it goes away on its own quickly and doesn’t result in torsion or rupture 😩

I continue to be in quite a bit of pain from everything, and the stress and anxiety are through the Roof! I am SO F*ing sick of this rollercoaster of shit!!

I expect to be hearing from a lot of providers in the coming days as we make plans for what’s next. I appreciate prayers for this to all be resolved quickly and easily, for peace and healing. All the plans we had for the remainder of the summer (including our wedding anniversary, the fair, waterpark, walks, etc) are completely shot to shit now. Emotionally, I am not in a good place. I am trying hard to focus on the kids, Brandon, and the little moments of less pain and peace, but they are hard to come by. I want to heal from all of this 😭. I want so badly to be healthy so that I can enjoy life with my family and we can do even simple things together without being insanely stressed or in a lot of pain. The fears and unknowns are terrible. I want to live a long, healthy life with my family. Cancer needs to F* off!!!

1 Year Since Spinal Surgery

1 year ago today I underwent emergency spinal surgery to remove a tumor on my cervical spine. That night in the ICU I couldn’t move my head even a millimeter without the most excruciating pain I’d ever experienced. I had no idea how I would ever recover or walk or use my right arm and hand again. Through intensive OT, PT, chiropractic, and an insane amount of grit, I am still working to regain function and control pain, while learning to live with the consequences caused by the tumor, surgery, and radiation.

Tonight (and every day) we celebrate. We celebrate Life. Being alive. Being home with my family. Being able to walk without an assistive device. Being here to watch my kids grow. To experience simple pleasures in life and continue working towards healing and many more years together.
Thank you, God! 🙏 Here’s to even better days ahead 💖

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 💜