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 šŸ’œ

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 šŸ™šŸ¤ž

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 šŸ™

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!! 🩷

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 šŸ™Œ

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 šŸ’œ

1 Month Since Surgery

It’s been 1 month since my spinal surgery, and I realized I never shared some of the key photos and information about my stay in the hospital. The past few weeks have been emotionally and physically some of the most challenging of my life. I feel like I keep saying some variation of that during this stupid cancer journey, but it’s true. I would like to declare that I am only accepting joyous, exciting, miraculous, and amazing experiences from here on out, ok?! 

Almost 10pm on 7/13/23; 8 hours after arriving in the ED and still no updates. No bed. Just a recliner and folding chair.
Axial view of the tumor (white) pushing my spinal cord out of the way
Sagittal view of the tumor (white) in my spine
My parents brought Sloane to the hospital a couple days after I found out about the tumor, and was unfortunately unable to leave the hospital before surgery (thanks, insurance). Her cuddles, energy, and joy helped immensely.
She picked out this little dog, ā€œSunny,ā€ in the hospital gift shop for me 🄰 She was SO excited about it, and told me I could cuddle him whenever I was scared or lonely. I kept him at my bedside every day in the hospital, and have since getting home, too ā¤ļø
I sadly missed Super Soccer Saturday on account of being stuck in the hospital. It was the last soccer day of the season. Mason was so excited to show me his trophy when he and Brandon came to visit that night ā¤ļø
Jess came all the way up to visit me the day before my surgery. Somehow the timing worked out and she happened to be in the state when all of this happened. So grateful for our time together šŸ’ž
Forcing myself to smile through the tears. 7/16 was our first date anniversary. We had planned to take the kids for a walk and then have lunch at our first date location, as tradition. Instead, I was stuck in the hospital, completely terrified for surgery the following day. Grateful for the amazing partner I met 12 years ago, still always by my side šŸ’™
In pre-op, waiting to be taken back. Scared as hell. Thankful for him.
The morning after a horrific night in the ICU
Partially with it, realizing what they’d done to my hair in order to complete the surgery 😳

Happy to have Jess & Brandon with me, 2 days post-op! Jess even redid my hair, which was no easy task given the amount of sores and scabbing all over my head and scalp from the devices they used to stabilize me during surgery šŸ˜µā€šŸ’«

Sitting on the edge of the bed for the first time, trying not to fall over. My head felt like a 200 lb lollipop on a wet stick for almost 2 weeks.

šŸ’ Cousins by chance, sisters and best friends by choice šŸ’ This woman continues to support me every single day. She listens to me bitch and cry and somehow continues to have patience and love for me every dang day.
Walking in the hall, post-op day 3. Scary and painful as hell.
Sometimes when I couldn’t find a good comedy on, I would just watch Bluey 🄰 Reminded me of Sloane and home.. and let’s be honest, it’s a good show, too šŸ˜
Mason picked out these beautiful flowers for me at Costco. They held up for over 2 weeks!! ā¤ļø
Being in the hospital is so incredibly lonely (despite the billions of interruptions during the day). One of my very best friends, Joy, came to visit me one day. It felt Amazing to forget about all the hospital and cancer stuff for a little while, and just feel like I was having coffee with my girlfriend šŸ’–
The rehab unit had a little deck; Brandon was finally able to take me out onto it one night. It was my first fresh air in 11 days 🤯 The deck had lots of beautiful planters, with plants, flowers, and vegetables growing.
This was my first wheelchair while in rehab. I later got an electric one which gave me the ability to drive myself to and from therapy appointments each day.
Feeling like a different woman! I finally got my hair washed (with lots of help from the OT) for the first time since surgery!! It had been 9 days 🫣
Realizing they shaved part of my head to do the surgery šŸ„“šŸ™
All packed up and ready to go home!!! šŸ™ŒšŸ™Œ After being in the hospital for 16 days, I was more than ready to get out!!
So happy to be in the car, going home!
My rollator goes everywhere with me now when I leave the house. As nice as it is, I’m looking forward to the day when I can safely walk without it!

Post-Op Day 5

My babies! šŸ’ž I got to see my babies for the first time in a week! šŸ„¹šŸ’— Brandon and my parents came with the kids for a visit this afternoon once I finished my first day of therapy. It’s been a very busy day, but my heart feels better after the much-appreciated distractions.

Therapies so far have been good, but tiring. Beginning Monday I will have 3 hours/day of OT and PT.

I got ā€œfittedā€ for the wheelchair I will use while here, and I was cleared of speech therapy needs at this time.

Taking a few stairs during PT was scary this morning. My knee buckled coming down with the first step, so that’s going to be a big thing to work on. Today was mostly about identifying deficits and needs. Tomorrow is more of a rest day, and then therapies resume Monday. In the meantime, I have things I can do on my own to keep improving my function and mobility.

I feel really good about the rehab team here, and am looking forward to making strides towards independence again. I often feel like a helpless prisoner here. I have a bed alarm so I can’t even sit up on the edge of the bed without calling for help, can’t do anything on my own, have to ask for help for the smallest of things… mentally, it’s a big added load to everything else. Needless to say, seeing loved ones today was a great distraction from the physical and emotional pain of all of this.

All of your loving and supportive messages are so so appreciated! They lift my spirit and help me to keep pushing. I want to get home safely as soon as I can, and will do everything I need to do. But the quiet, alone time leaves a lot of space for bad thoughts to creep in. I love all the good you guys are leaving here for me, sending me, and texting me. It may not seem like much, but the encouragement and love are truly appreciated! So thank you all šŸ’–

Helping Others During Times of Crisis

We have been incredibly fortunate over the last few years to be on the receiving end of a great deal of kindness and generosity. From family to friends to complete strangers, people have offered up support in incredible ways to our family. Everything has meant so much to us and has made the numerous crises we’ve faced more manageable and bearable. 

Most of us have either faced our own crises or witnessed a loved one go through their own. These events can leave us feeling stressed, lost, helpless, and possibly very alone. I thought it might be helpful to share some ideas for anyone who may need them someday, including ways to make it as easy as possible for those on the receiving end.

Financial support

When a major crisis strikes, one of the top worries for many people will be money. Time away from work, lost vacation, and associated bills/costs may all be a problem. Sloane’s open heart surgery, my surgeries, chemo, scans, and appointments have all required SO MUCH time away from work – obviously for myself, but also for my husband and our family. Suddenly there is a decrease in income, a MAJOR increase in expenses, along with the world being turned upside down. Simple things like going to the grocery store, making meals, and doing fun things with the kids become luxuries. 

Needless to say, for many people (though not all), any type of financial support may be incredibly helpful. If you’re not sure, it’s ok to ask! Just beware, it’s normal for people to decline help: No one likes to feel needy or helpless, even if they could legitimately use the help. It honestly took us quite a while to accept my cousin’s kind offer to start a GoFundMe account for us… we finally decided to do so because so many people were asking if we had one. We had no idea so many people would want to help us! 

If you are going to gift money, there are a variety of ways to do so. Perhaps you could help set up or share a fundraiser, or help spread the word about another preferred payment method. Platforms like GoFundMe are a great way to streamline updates and quickly spread the news, but they do take a small portion of the donations. Cash, check, gift cards, or direct money transfers through methods like Venmo and Apple Pay are generally quick and easy, without any associated fees. 

Food

In our experience, and in many others’ I’ve seen, one of the next most helpful means of support is food. When we’re in crisis mode, the last thing we want to (or can) think about is preparing a meal; and when there are kids involved, you know it’s an even bigger chore! Nowadays there are so many delivery services available, but this of course depends on a person’s location. If you know the person’s favorite restaurants, grocery stores, or delivery services, simply sending them a gift card so they can order their own food on their own time is super slick for you, and probably most convenient for them. People have such a wide variety of dietary preferences and restrictions, so this is a pretty safe way to ensure they can get just what they want when they need it. You may have the desire to order food for someone, thinking it will make it easier for them, and for some people, this may work. However, for a family, it’s probably easiest to allow them to do it themselves and just gift them a gift card or money. 

One really cool food delivery option we learned about through a very kind gift is a website called Spoonful of Comfort (www.spoonfulofcomfort.com). They offer gift selections for different occasions and ship all over the United States. Each package comes with a variety of options to choose from, and FYI: their triple chocolate chunk cookies are some of the best cookies I’ve ever had! There are an increasing number of these food delivery services, which is really fortunate for those who may not otherwise have access.

If you live close by and want to bring some type of food, my advice is to check on dietary preferences/restrictions and have some options in mind. When someone is in crisis mode, the last thing they want to do is think of a meal for someone else to make for them… it might make them feel like they’re asking too much, and honestly, might add more stress. My advice would be to offer some specific options, and see if any of them sound good to them. Preparing a simple, ready-to-bake meal with all the fixings and sides can be incredibly special, and best of all, easy for them! Think: some type of pan meal that can be warmed up in the oven, pre-cut and cleaned veggies, fruit, or a salad ready to be thrown together. Anything you can do to reduce prep work is going to be super helpful! Lastly, if you’re planning on dropping off the food, please consider offering the option to drop and go. If they can and/or want to visit, great! But that obligation to entertain or talk may seem like a burden they are not ready or able to take on. Remember, the goal here is to lighten their burden, not create new ones.  

Gifts

It is unlikely that anyone facing a crisis is expecting gifts. However, I recommend considering gifts that are either practical or genuine and personal if you’re feeling called to send something physical. I will be writing a separate post that will go into more detail about specific ideas, but care packages or items you know will provide some comfort or ease into their day can be especially meaningful. 

Support

Helping someone during a crisis does not require you to reach into your pockets. Consider reaching into your heart. Send a handwritten card, a text, or an email. Share some love, support, inspiration, or hope. Pray. Lend an ear. Be patient. And it never hurts to offer up the magical words, ā€œNo need to respond.ā€ I have personally gained so much strength from the kind and supportive messages I’ve received from people over the years. Unfortunately, I don’t often have the time or energy to respond (or respond as fully as I’d like) to every message. To be on the receiving end of ā€œNo need to respondā€ feels like a warm hug. I know they understand I would reply in depth if I could, and that I will if I get the chance, but that burden has been lifted from my already-heavy shoulders. 

If you find yourself in a position to help others and you have the ability to do so, I hope this post can be of help to you. This is by no means an exhaustive list, and I will plan to share further details in a later post, as mentioned above. 

Sometimes life is exceptionally hard and unfair, but it is absolutely easier to face the dark days when you know you have the support of others holding you up. 

🌻Be the reason someone smiles. Be the reason someone feels loved and believes in the goodness of people. -Roy T. Bennett🌻

Suffering

Suffering. Sometimes when you’re in the thick of it, you can’t see past your own nose. The world is unfair, and no one understands you or your situation. You’re wondering why God or the universe is punishing You! Why not someone else more deserving of punishment?! 

Sometimes, when you sit with the suffering long enough, you begin to look out and see that many others are also suffering. Yes, the world is unfair sometimes. No, no one truly Does understand your unique situation or personal level of suffering. But maybe this isn’t about punishment. Maybe this is just part of the human experience, and how wonderful to have the capacity to help ease another soul’s suffering.

We’re all suffering a little bit, aren’t we?… Some much more than others, and we’re all in different phases of dealing with it. I know I can swing between cynical and compassionate multiple times on a particularly tough day! 

While we can’t (and shouldn’t) always be the ones tending to others’ suffering, wouldn’t it be wonderful if we could each help alleviate a little of someone else’s suffering any chance we can?Ā 

Think about the last time you eased someone’s suffering. When was the last time someone did that for you? 

My job requires me to have a llllllot of compassion for others. Fortunately most days I am keenly aware of my patients’ suffering, and I’m able to listen, sit with them through it, and help problem solve. Is it always easy? Big no! But I’m all too familiar with what it feels like to be a scared patient and parent and need more than anything for my health care provider to truly be there with me and for me. Even if I can’t always get that as a patient, I do my best to be that provider whenever possible.Ā 

The world can be a scary, stressful, and uncertain place; do the world (and yourself) a favor, and take the opportunity to help ease someone’s suffering when you can. You might even be surprised to find that you’ve helped yourself the most in the end.

🌻Be kinder to yourself. And then let your kindness flood the world🌻