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 🙏

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.

Catching Up

Hi all! It’s been a while since I’ve updated, so there’s a lot to catch up on. All in all, I’ve been doing ok, and am now trying to prepare for scans again in a couple weeks. I had my mammogram this morning, and praise God, it was negative!! Being able to cancel radiation in January was Amazing, and I’ve been taking the time since then to do my best to heal and rest.

I wish I could say it’s been easy and I’ve just been sitting around watching my favorite shows, reading for fun, and getting caught up on All the things…. But it has been quite a different story. I’ve unfortunately continued to have a seemingly endless list of new and changing health issues to deal with. The treatments and medications have left me with so many side effects and evolving problems, that it seems like I’m just constantly trying to find ways to cope with some new, annoying issue each day. It’s really difficult to find a balance between activity and rest, because everything changes day-to-day (sometimes hour-to-hour). I therefore can’t even really get into a routine and it’s hard to plan things since I don’t know how I’ll be feeling. Sometimes I feel ok and I can do tasks around the house without much issue; other times I can’t do much other than sit and try to find a way to only minimally be in pain. This has all been a very difficult lesson in forcing myself to rest and constantly remain flexible (2 things I have never been all that great at) 🫣

I continue to go to physical therapy and do my at-home exercises. I am still getting stronger since surgery, but it is frustratingly slow progress! I think one of my biggest saving graces has been my amazing chiropractor. Every week I go in with numerous issues, and he always makes me feel so much better (physically and mentally). He is one of my earth angels 😇

I’m doing my very best to remain hopeful and optimistic despite all the challenges… Some days I expend most of my energy doing so, but getting stuck deep in the pit of despair is my absolute least favorite place to be, so I’m going to continue to fight to stay out of there as much as possible! The amount of effort it takes on a daily basis to work through physical, emotional, and mental challenges is unreal… I am so thankful for family and friends who make it a little easier! We’ve been trying to get outside more with the unseasonably warm weather and have been doing family Mario Kart most nights. I’m still typically the worst racer 😏 (Brandon and the kids had been racing together for quite a while until I was feeling up to it), but we have a lot of fun competing and being silly. The trash talk is also kind of hilarious! 🤪😂

My next scans and appointments with Mayo will be March 27-28^th. Am I absolutely dreading it? Yes! Am I going in with the highest hopes of miraculous news? Also, Yes!

I will, of course, keep you updated as I am able, and greatly appreciate those prayers, well wishes, and positive vibes! 💜

Mason always alerts me to beautiful sunsets out the window ❤️

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.

Updates and Thank You

I would first like to extend our deepest gratitude to everyone who came, donated, and helped out with our benefit last month 💜 Ashley and her family did an incredible amount of work to make everything happen, and we are so very thankful to them and everyone else for sharing their love and support around this event! We had so much fun seeing family and friends from near and far, many of whom we hadn’t seen in at least a few years! I was absolutely exhausted by the end of the day, but my heart was very full 💞

I have intended to post an update several times over the last few weeks, but it hasn’t been easy to accomplish. I’ve been to both urgent care and the emergency room for new and worsening symptoms. I spend my days trying to cope with the physical and emotional pain and stress of everything, and trying not to drown in the grief and anxiety that cancer has brought into my life. I find myself distancing from friends and loved ones because I feel like a constant burden. I’ve increased the frequency at which I’m doing psychotherapy, and am even seeing 2 different therapists now.

In addition to trying to manage my mental health, there are the endless appointments for trying to manage my physical health and pain. The recovery from surgery and spinal radiation have continued to be frustratingly slow, in my opinion, but I continue to do the work.

Now today is scan day. I won’t see the oncologist until Friday, so will be doing my best to cope with the dreadful wait.

We have been living in some degree of survival mode for the last 4 years, but since my May scans, we really have been barely limping along. From scans to treatments to more scans and more treatments… I don’t get enough time to recover before more crap gets piled on.

I’m ready to heal. I’m ready to be able to make plans, keep them, have big (fun) things to look forward to, and not let the fear and grief of cancer rule my every thought and plan. I appreciate your prayers and positive vibes for good news and healing in my future ❤️

Excited about my AFO!

Meet Artie, my new AFO (Ankle Foot Orthosis). I’ve waited (impatiently) for 5 weeks to get this guy, and I am so excited to finally have him! (Why is it a “guy” named Artie? I truly don’t know, it just seemed to fit. No pun intended 🤪).

One of my PTs suggested I see an orthotist to discuss possible brace options the very first time he watched me walk. He noticed all the issues I was having with my gait and thought something like an AFO might provide the support and stability I needed to make walking easier and safer.

My right leg has been very weak since surgery. My knee buckles (which is likely what caused my fall a few months ago) and hyperextends frequently when walking (which puts excessive wear on the knee), I have foot drop, the muscles are weak, and the joints and muscles are uncoordinated from a neurological standpoint, meaning the messages to and from my brain don’t move as quickly or easily as they used to. I’ve also been unable to do more than walk/hobble at a normal pace. When I’ve tried to even walk quickly (like crossing in the parking lot or to get out of the rain), it’s like my leg doesn’t work. It feels like a dead weight that I’m dragging, which makes it incredibly difficult to move quickly!

There has been improvement with therapy, but it’s frustratingly slow, has gotten worse since radiation, and I still don’t feel safe walking long distances without an assistive device (such as my walker or a cart when shopping), especially when my leg is fatigued.

AFOs help stabilize the joints and therefore improve overall functioning of the affected leg. Although it felt a little clunky at first, I immediately noticed an improvement with walking when I tried one! My balance is improved, foot drop is controlled, my knee hyperextends a lot less (which means less buckling), and I feel more stable overall. And get this: I was able to JOG with the AFO on!!! (Now, I’m talking a very short distance, but I did it)! I have wondered if I would ever be able to move quickly again. I almost cried when I tried it in a PT session.

Needless to say, I’m excited to have this brace. I can move it into whatever shoes or boots I want: the foot plate goes right under the insole. The only issue would be making sure there’s room for the ankle bar. Do I think I’ll need this brace forever? No. But for now, it is really going to help!

Benefit

I’ve had several people inquire about the benefit I mentioned in my last post, forgetting that I have followers who aren’t also Facebook friends 🫣 I apologize, and will share some information here.

Brandon’s cousin’s wife, Ashley, is so very kind to be going to all the work of organizing this for our family. We are really humbled and grateful for all of the support pouring in around it!

The benefit will be taking place on Saturday, November 18th from 4-8pm at the American Legion in Anoka, Minnesota.

I will attach the event flyer here, as well as the link to the Facebook event page. If you have any trouble accessing it, please let me know. This Facebook page is where any updates will be posted leading up to the event. If you have questions about the benefit, you can contact Ashley directly at ashleyeb22@gmail.com

Facebook event page: click here

(I think this link will expire after a certain number of people access it, so if an updated link is needed, please let me know!)

Ashley is also asking that if possible, you RSVP with this Google Doc if you plan on coming. This helps ensure we have enough food and beer, and will speed the line at the door.

It would be so great to see some of you, if for nothing more than to say hello and give you a hug! As a result of COVID, cancer, and Sloane’s heart condition, we have been pretty cautious and isolated for the past few years. We have really been missing our family and friends.

Please do not feel obligated to come, but know that any form of support is absolutely appreciated!!! Feel free to invite/share with anyone else you think might be interested.

Thank you all, and I hope to see some of you there! 💜