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! 💜

Celebrating the Completion of Spinal Radiation

I was finally feeling physically and mentally ready to celebrate my radiation victory last night. Brandon and I went out for dinner at a lovely little Italian restaurant not far from home. We had a beautiful night for it! (We were also surrounded by sunflowers… tell me that isn’t a good sign 🌻).

While I’m still struggling with a lot of side effects (some of them continue to worsen), I was determined to do something special.

It’s been difficult to imagine celebrating anything when no one at my appointments has seemed to acknowledge much of the wins, but I’m beginning to understand that it’s truly no one’s responsibility but my own. I get to decide what counts as a win and how I choose to celebrate it✨ It would be nice if the staff cheered me on, but sadly that doesn’t seem like the world of healthcare right now.

Since I haven’t been able to ring the big bell at the clinic, I decided to buy myself a little hand bell, and will be using this as my “victory bell” whenever I feel like celebrating. It’s tiny, and seems kind of silly. But it also seems silly to not somehow acknowledge my triumphs. Honestly, each day of thriving with a Stage IV cancer diagnosis is a victory, so I know I should be acknowledging and celebrating more of my wins. I focus enough on the hard, uncertain, scary, and frustrating parts… this will be my attempt to bring more focus to the positives 🙏💜

Cervical Spine Radiation Complete ☑️

Cervical spine radiation is complete!

Sadly, the final days of these radiation treatments are a bittersweet, somewhat hallow victory. I still have cancer inside me. I don’t know what the future will hold. I watch people come out, ring that bell, and we all clap and cheer. I always cry. There’s no fanfare when I walk through those doors after treatment. No bell ringing. No cheering. Just me, fighting back the tears at reality.

As the days have progressed, it has become more difficult to walk. My left leg used to be my strong one, but now it’s buckling, too, which means I’m a bigger fall risk again. I’m walking much slower and am having trouble with any uneven terrain (even with the walker). Voice is getting hoarse. Dry mouth. Irritated/swollen throat. Swollen, sore neck and lymph nodes. Stiffness. Sensory changes in my legs. The numbness in my right arm and hand are getting worse (I was even having trouble holding up 3 fingers for this photo). Fatigue from treatment and lack of good sleep. Steroids are keeping me from sleeping well… and it’s all adding up.

Once again, I’m increasingly helpless and less independent. It’s been a tough week, to say the least. I’m glad to be done with this. But man, does cancer suck.

Thank you for your continued support and prayers. I certainly appreciate them all as I head into yet another period of recovery ❤️‍🩹💜

Radiation 2 of 3 Complete

Radiation 2 of 3 completed! Tomorrow will be the last day.

I woke up with severe swelling in the lymph nodes of the front of my neck. No other new or worsening symptoms suggestive of an upper respiratory infection, but scary, nonetheless. It’s been tender to the touch, hurts to move my head any which way since the skin pulls, and there’s a constant burning sensation in the area. I wasn’t able to get an answer for potential causes until meeting with the radiation oncologist this afternoon. She showed me the treatment images, and the submandibular glands do get a low dose of radiation, so they are likely angry right now. Mystery solved, but symptoms will worsen with each treatment 😩 I sure hope they get better quickly!

I’m also starting to experience some throat irritation, dry mouth, and just general worsening of neck pain and neuro symptoms (denser numbness, increased tingling, burning, pain, etc).

Overall, just feeling pretty crummy. So sick of my body getting beat up and not being able to heal and recover in the ways I want and need. Hoping for some better sleep tonight, and manageable symptoms going forward… Seems sad to have such a low bar. I’d love to feel fantastic and healthy and vibrant! 🙏 and be cancer free!

Spinal Radiation 1 of 3 ☑️

The first of 3 radiation treatments to my cervical spine is done!

This experience is disturbing and traumatic, to say the least. I was fitted for my mask on Monday, and had no idea what was truly in store. I had to lie through a treatment simulation And an awful MRI while I was trapped in this device (the MRI also required the head cage, so it was constant claustrophobia throughout it all). It’s like something out of a horror movie, in my opinion. My head, shoulders, and upper chest are all pinned beneath a tight, hard mask, and I’m unable to move at all. My forehead is smashed so tightly in the mask that it leaves marks on my face for over an hour after it’s off. I can’t open my eyes while it’s on. I have a tiny nose hole through which to breathe. And I have to hold perfectly still without completely panicking. Sounds great, right??

Since I had no warning on Monday, I didn’t have a chance to mentally prepare ahead of time (or take any medication to help calm me). Now I have a prescription to take the edge off before heading into treatment, but it’s still an extremely unpleasant experience. I think anyone who’s been through head or neck radiation can attest: This is an unpleasant and scary ass process, even if you don’t have a history of claustrophobia.

The plan is for 2 more sessions this week, and then follow-up scans in 3 months.

I appreciate your love and prayers for peace through this process, and for a good outcome! I’ll plan to update more tomorrow 💜🌻

Scan Update

It’s been a stressful and emotional couple of days with scans and appointments, but I’m finally feeling like I can breathe a tiny bit better now. Yesterday I had a spinal MRI, CT of the chest/abdomen/pelvis, and met with the radiation oncologist who treated the lung nodule back in May. Today I met with my oncologist.

Our day yesterday was quite emotional because when we left the appointments, the doctor didn’t have all the information. Based on what we Did know, it sounded like there was a possibility of recurrence in the spine, as well as several new lung nodules. If the tumor had come back in the spine, there was a good chance I would need to have surgery Again, in addition to radiation, and then we would discuss what’s next for the lungs.

We left her office feeling completely defeated and devastated. It took every last ounce of my willpower to not completely collapse on our long walk back to the car. As soon as we entered the parking garage, I fell apart. I cried and cried and held onto Brandon for I don’t know how long… cars passed and the world went on around us while our world was seemingly falling apart. After pulling ourselves back together, I got a notification that the final chest CT report came back, and it showed NO definite new growths. The lung nodules that have been present have continued to grow but at a similar rate as before. And the lung nodule that was treated back in May has responded well to the radiation! While not great news, it was much better than what we were originally told.

Ok. So now we were looking at “only” the possibility of really bad news with the spine. Since my surgery was with a different health system, we’d have to wait until the images could get pushed through, and for the team to review and compare to yesterday’s scan.

This morning we met with the oncologist. She said that she talked with the radiation oncologist and surgeons on the team who reviewed the post-op MRI images and yesterday’s results, and there is NOT concern for recurrence at this time! The area they were uncertain about is “just” post-operative changes in the spine. Therefore, they do NOT think that surgery is warranted again! 🙌 Everyone on the team does think that radiation is a good idea, however, to make sure things are “cleaned up” so that surgery isn’t necessary again down the road. The surgeons think that my spine is still healing, but healing well, which was good to hear.

So at this time, it sounds like the plan will be for radiation to start the week of the 18th. I’m waiting to hear back from them about all of that. Treatment will increase inflammation in an area that is already very inflamed, which means pain and deficits are likely to increase for a while. Additionally, because of the location, I will probably have an extremely sore throat and hoarse voice for a while. They’ll give me medications to help with it. And, of course, worse fatigue! Yay!… 😒🙄

The brightest of spots is that the abdomen and pelvis still look good, so no changes there!! After all of this, the plan is to rescan everything in about 3 months.

Still with me here? Ugh!! It has been a fricken rollercoaster, and I’m over it! I’ve never been a fan of rides!

I’m going to do my best to enjoy the weekend with the kids and Brandon, knowing that with my already limited abilities, I have a lot to try to get done and prepare before radiation starts again. You all know I will do my best to continue updating as best as I can. I appreciate your patience with these updates, as sometimes I really need to rest (physically and mentally) before I can write everything out… aside from taking care of my responsibilities as a human and mom 🙃

Shoutout and thank you to the BP Cancer Group for my t-shirt and all of their support over these past few years. It’s such a fantastic group from my little hometown, and their annual cancer auction is actually going on this weekend! (www.bpcancergroup.org)

Love to you all! Thank you for your continued support. I’m praying and working every day so that I can someday share my miracle story with you all 🫶💜

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, “Sunny,” 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 ❤️

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 ❤️

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 💞

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 💙

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 😵‍💫

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.

💝 Cousins by chance, sisters and best friends by choice 💝 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 😏

Mason picked out these beautiful flowers for me at Costco. They held up for over 2 weeks!! ❤️

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 💖

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 🥴🙁

All packed up and ready to go home!!! 🙌🙌 After being in the hospital for 16 days, I was more than ready to get out!!

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!

1st Week Back Home

I’ve been home from the hospital for 1 week now. I am extremely glad to be home, but I’d be lying if I said it’s been easy. Recovery is still very tough, and I’m finding it difficult to not overdo it. I see all the things that need to be done, I want to go back to normal, and absolutely hate being helpless with so many things. There have been a lot of tears due to frustration from my deficits and limitations, and all too often, the gravity of everything that has transpired over the last few weeks hits me like a ton of bricks.

I’m still not able to safely take the stairs on my own, my right leg buckles from time to time, I can’t get my right arm above my shoulder, I can’t lift or carry anything over 10 lbs, I still have a lot of pain, and my right hand/arm can barely pick up or hold anything. Part of me knows that I just had major surgery less than 3 weeks ago, but another part of me just wants to go back to normal life.

I had to get a 4-wheel walker to take anytime I leave the house. Besides providing a place to sit if I need to rest or conserve my energy, I’m still a fall risk, so can’t take my chances walking far without it. During my final inpatient physical therapy session last week, I had a fall. We were outside walking on different surfaces, testing my abilities and endurance. During our last lap around the block, my knee buckled without any warning and I fell straight down on my butt. It was physically painful, but I think my pride was hurt even more. How, on my very last day of therapy, could that happen?! I’m so tired of feeling like I can’t trust my body! 😢

I had my first outpatient OT appointment this past week, and will be seeing them twice weekly going forward. I have my first outpatient PT appointment this coming week, as well as follow-up with the neurosurgeon. Since I can’t drive (and won’t be able to for a while), all the appointments are keeping my mom & me very busy.

I’m doing my best to focus on whatever good I can find in my day, on the kids and Brandon, and the encouraging words from family and friends… but this shit is Hard. And scary. I’m so sick of being scared all the time, of everything seeming so difficult, and feeling like I’m failing at so much. I want so badly to heal. From surgery. From all the chronic problems I’ve been burdened with over the last few years since diagnosis. From cancer.

Good health is so easy to take for granted. Life is easy to take for granted. Count and appreciate your blessings. Thank you all for being some of mine 💜

Home from the Hospital!

I made it home!! I was discharged from the hospital Saturday morning, and got to go home for the first time in 16 days! I am very happy to be out and back with Brandon and the kids again! Now I need to be careful not to overdo it with all the unpacking & laundry, in addition to the things I want to do 😏 I can say my own bed has never felt so good!!

Outpatient therapy will start this week, and I have lots of exercises and stretches to work on in the meantime to progress in my recovery. I’m still waiting to hear back from Mayo about their final recommendations on next steps. Trying not to think too much about it all, because it instantly puts a weight in my stomach and a dark cloud over my day.

As excited as I’ve been to get out of the hospital, it was very hard to say goodbye to my rehab team on Friday. My doctor was truly one of the best I’ve ever met: both professionally and personally. My lead OT and PT were pure gems. I cried saying goodbye to all of them.

I will continue to update through my recovery, but wanted to take a moment to let everyone know that I’m safely back home, and so very grateful to be here! 💜❤️