The Eyes Have It
I took the hour long drive to the eye doctor today. He was impressed with how far I’ve come, but offered no explanation as to why my double vision had corrected other than to say myasthenia gravis is complex and doesn’t show up the same for everyone I guess. Nothing had changed when my vision started to correct at the beginning of July. My medicine was still the same, I hadn’t had the surgery yet, and I hadn’t started the infusions. I just woke up and could start to see better. Who knows. I still wake up with double vision every morning and even when I take naps, it splits again. The doctor found that odd because he said it’s usually the opposite, people usually wake up rested and as their eyes tire throughout the day it gets worse. Leave it to me to be the opposite. But I still have some weakness which is why it crosses, but it’s stronger than it was before. Now I just have to wait to see the neurologist in October and see if I can start to wean off the prednisone. Then I’ll know for sure how my symptoms stack up. In the meantime, I’ll just enjoy my vision while it’s good.
Home Infusion #4
I was excited to start the day with my boy on a field trip to the middle school. He is starting 6th grade and they had an open house this morning where we could do a scavenger hunt and find his classrooms and locker. It was a great way to shake off the nerves and get ready for the new school year!
I also made it to my final home infusion. I now have had four infusions for myasthenia. I haven’t had any real changes but I’m glad it hasn’t been a detriment to me.
I do not see my neurologist until October so I won’t have an update on tapering the prednisone or continuing these infusions for another month, but at least I’m on the right track with a treatment plan going forward, especially when six months ago I was so lost and full of doubt. I’m in a much better place, thank God.
Pushing
I find myself pushing on to do more things. This morning I got up early, finished a book I was reading, and made a yummy breakfast for the family. Then I went out to lunch with a dear friend in downtown Princeton.
When I returned home, I did a little house cleaning and started the Herculean task of going through the mountain of clothes that don’t fit me. I ended the day with a grueling bike ride in the high humidity.
My lungs were seizing and my thighs were burning, but I pushed myself. I don’t know for sure if I’m returning to who I was or if I’m becoming someone new. Either way, I’ll keep pushing.
LAST DAY!
I finally made it to my final day of active breast cancer treatment! This time last year I was knee deep in chemotherapy treatments, and now here I am at last, all done! 
My oncologist’s office doesn’t have a bell to ring (because they don’t want people to feel badly about it) so instead they give you a certificate. I’ll take it. Because I’m done!
What does that mean? It means I will only go back to the oncologist every three months for checkups and I will continue to take tamoxifen for the next 5-10 years!
Other than that, I’m free and ready to move on with life. It’s back to my studies and back to work one day soon!
In the meantime, I’ll continue to enjoy life, spending time with family and living life to the fullest!
Lucky Day
Today felt like an incredibly lucky day. First of all, we made it to Philadelphia in record time this morning (thank you for driving, Ed!). I got into radiology and had my chest x-rays done quickly. We even had time to stop for coffee before my appointment.
I was so early for my appointment with the thoracic surgeon, but thankfully they took me in and I managed to see him sooner than expected. He took a look at my scars and felt everything was fine. But the best news of all was the pathology report showed the ALL CLEAR - no cancer! Woo hoo!! How exciting! It means I don't need to return to see him again, ever, and can move on with my life! The next time I return to Philly will be to meet with the neurologist at some point to discuss the myasthenia. But otherwise, I'm free!
We left the hospital quickly and I made it home again in record time, which is what I needed because I had a job interview, and I think it went amazing! Fingers crossed, I'm hoping I get it. I should hear back from them by next week some time.
Overall, it felt like a super lucky day for me...I was riding the high all day! To have so many good things happen just felt like a dream. Here's to hoping for more lucky days ahead!
Running Errands
Today was all about the kids. Dentist appointment. Doctor appointment. But tomorrow will be about me again. I meet with the thoracic surgeon to follow up after the surgery. Hopefully the pathology results are clear and this scar is doing better than I think it is.
Time for bed, so I can wake up early for the drive to Philly.
Home Infusion #3
I had the privilege of starting my day with a walk with my girl, at her invitation! It was a healthy start to the day and a great way to connect. How lucky am I?
Then I had my third home infusion. So far I haven’t seen any major changes for better or worse, but I’m ok with that. I have one more infusion next week and then I can re-evaluate next steps.
After running errands with the kids (bloodwork, haircuts), I went out for dinner with my friends. It was so wonderful to reconnect with them, after being home most of the year, I missed out on the camaraderie and fellowship. It felt great to be out, enjoying their company, and feeling normal again. These are the days I’ve been waiting for…
Sunday Fun Day
I started the day out on the bike again. I was super ambitious but unfortunately was not prepared to bike on an empty stomach, so I petered out pretty quickly. But it felt so good to ride and use my body like that again. After breakfast Matt and I ran some errands while the kids stayed home. It was so lovely being out just the two of us. We ended the night watching a movie as a family. I’m finally in bed reading a book for pleasure and I can say that my heart and my mind are full of peace and joy right now. So many months of pain, frustration, and worry…and now I’m exercising again, I’m relaxed and feeling good, and that brings such peace to my heart. Things feel like they are finally falling into place. What a joy!
Cycling and Fun
The cooler weather was the perfect invitation to get outside on my bike. It’s been over a year since I rode and I missed it terribly. It was so great to get out and bike, I can’t wait to do it again!
I began my day with an awesome bike ride and ended my day with an awesome dinner! Being with my best friend brings such joy to my heart. (We missed you Lu!). It’s the kind of friendship where time stands still for you to connect and build your everlasting bond over good food and laughs. My heart is full!
Next Phase
I made it to the end of another week with a lot on my plate. Today I started my next phase of cancer treatment. I took tamoxifen for the first time. Only 3651.5 days to go (yes that’s a pill a day for the next ten years!). Hopefully I can come out of it relatively unscathed, but some of the side effects include hot flashes, joint pain, and weight gain. Fingers crossed I can skip all of those!
I also began a new class this week - chemistry! Yes I know I sound crazy, but I need to take it so I dove in head first….it’s been fun, I must admit. It’s nice to stretch your brain to think about things you wouldn’t normally think about. I begin my other two classes next week!
So today to unwind, I went out to breakfast with my mom and bought a bunch of pastries from Pie Girl. All is right with the world again. I’m feeling healthy and strong, I can’t ask for more right now.
Getting Better, Not Worse
In the spirit of doing all the things I used to do, I made it out to the farm to pick three quarts of blackberries. It was taxing but totally worth it.
I’ve been keeping a close eye on my healing. Of the three punctures from the robotic surgery, one of them is lagging behind in closing so I’ve been nursing it hoping it heals properly. Fingers crossed it gets better, not worse.
Home Infusion #2
Sunday was a day of relaxation. After all that studying and mind bending work, I took the day to do nothing but watch television! So relaxing!
Today I got down to business and went food shopping on my own for the first time in forever. The hardest part was carrying the groceries in by myself. I’m not as strong as I used to be when I was kicking butt in taekwondo. I look forward to being that strong again. But baby steps, I have to build up to it.
I also received my second home infusion. Thank God there are still no side effects. I don’t see any changes yet but at least things are not getting worse for me. I’ve had some unrelated pains, maybe from the surgery, but I’m keeping an eye on it and hopefully it’ll pass soon. I’m looking forward to my follow up appointment with my surgeon next week to talk about how things went. Until then, I just need to wait it out.
Birthday Magic
Today was a magical day! Not only did I finally finish my final exam and pass (hooray!) but I also got to celebrate this wonderful man on his birthday! We ate at his favorite birthday restaurant and took a walk for some ice cream. All is right with the world again! Happy Birthday Matt!
Two Down, One to Go
I finished two exams... I have one more to go. And it's the hardest one. My brain hurts, my anxiety is high because I want to do well. I just don't know how to cram more information into my head. But I'm trying.
I took a much needed break to visit the Somerset County 4H Fair. It's one of my favorite yearly activities where I get to visit with farm animals and marvel at the hard work of these young 4H kids. I was in my happy place.
Now it's back to the mental grind.
Finals Week
This is my last week of classes. I have three final exams this week and so my brain is mush. Despite everything I’ve been through this semester (hospitalized twice, gastro virus, double vision!) I’ve managed to keep up with my coursework…but this is the final stretch, where it matters the most. So I took some time to have coffee with my mom this morning, but the rest of my minutes this week will be spent grinding. Wish me luck!
Home Infusion
Today was a first for me. I had my first home infusion for myasthenia gravis. While my symptoms have not flared up too much (I still have double vision every morning), I am receiving treatment to eliminate them altogether and hopefully keep them at bay. I know what you're thinking, isn't that what the surgery was for? Yes and no. The surgery was to remove the thymus, which likely caused the myasthenia, but it wasn't going to cure it. If it would, I may not see results for at least a year according to my neurologist. Therefore I needed to begin another treatment (apart from the prednisone I'm taking on a daily basis). So today I began my first infusion of Vyvgart, a new immunotherapy drug for myasthenia gravis.
A nurse came to my house, set up my own little IV pole, and hooked into my port. I sat on my sofa in my own house and received my infusion, while petting my cat. So fascinating! Thankfully everything went off without a hitch. No adverse reactions, no symptoms of any kind. I went about my day and all is well. I'm so grateful for good things!
Legoland
When we discovered that our Legoland passes would expire on Sunday, we decided to take a last minute trip to New York and give the kids a fun summer memory. We arrived at our hotel late in the evening and started out today at the theme park. We had a blast and got on every ride, even the roller coaster, much to the girl’s chagrin!
The kids were as impressed as I was with how I was able to move around, like I didn’t even have surgery the week before or suffer another stupid gastro virus too.
It’s also fascinating to see the difference a year can make; we went exactly one year ago. I had completed one round of chemo and wanted to enjoy myself with the kids before things got worse for me. Here I am one year and 37 pounds apart!
End of the Week
Did I see a double rainbow? Yes I did. Another fabulous night of sleep! I long for moments like this. Good food, no stomach sickness, and lots of good sleep! This is the stuff dreams are made of.
Today was infusion #17. Only one more to go. I couldn’t have imagined when I started this in July 2022 that I would be here, almost finished with it. It’s become such a part of my routine, it will be so different to not be doing this. But just when I thought I would be finishing and getting my port removed, I have a new infusion to look forward to because of myasthenia gravis. I might be starting those infusions very soon too.
After my infusion, I walked home. I took in the lovely fountain in town and enjoyed the fresh air. What a way to end the week!
Unicorn
After waking up two nights in a row to use the bathroom, when I woke up this morning after a full night of sleep, I told Matt it was as if I had just seen a unicorn! To sleep through the night and wake up refreshed is like spotting a double rainbow, it’s the most pleasant but foreign surprise! You also know you may not see it again, so you have to take real pleasure in it.
With such a great start to the day, my mind was driving in a positive lane. My stomach behaved; I have not had any heaving. I ate a good breakfast and my cousin came to visit so I cooked a hearty pasta lunch for us.
I relaxed and did some studying and finally after dinner I took the bold step to go for a walk with my boys. I experienced a little chest tightness and needed to return but I was proud that I even made the decision to walk and put in the effort, for my body and my health.
Today was definitely a unicorn day! I hope I get to see more of these!
Turning a Corner
I am starting to recognize these patterns. I wake up with a belly full of bubbles, go to the bathroom, and begin to heave a little. Nothing comes up. That's a good sign. No more vomiting, just the retching. This will start to subside...it'll take some time, but like last time, the reflex faded away and life proceeded like normal. I eased into some solid food today because I'm ready to dive right back into life the way it should be, and I even sat outside to collect my daily dose of vitamin D.
I have not been on any pain killers so I feel a bit liberated from everything. I can move with really no pain. I'm still a little sore at one of the entry points, but to be expected. I am still incredibly surprised by how easily I managed after the surgery. I fully expected to be down and out for weeks, and yet this was one of the easiest things I've had to experience so far. The stomach issues have caused me more grief and setbacks than anything. And my previous surgery (lumpectomy) was much harder to recover from, too. I am moving around like nothing happened at all! Magical!
Today I had a follow-up chest x-ray to ensure that my lungs are fully cleared after the surgery. The report showed no evidence of pneumothoraxes. That's great!
Speaking of the surgery, in case you are interested, this is the result of my thymectomy. The surgeon came to see me when I woke up from the anesthesia and he reported that everything went well and that he took a picture of it. I was excited to see what he removed, so I'm sharing it here with you. Feel free to look away if you're squeamish.
Glass Half Full-ish
After vomiting four times last night, I decided to get to sleep early. I couldn’t take it anymore. At 9:45 my brain fell into deep sleep and I slept for most of the night, except for a couple of bathroom breaks. It was the least I could ask for in my exhausted state.
Today I spent 99% of my time in my recliner trying to stave off the nausea and vomiting. So far ok. I managed to take in some applesauce. That’s a huge deal.
I feel like I'm back where I was in June, figuring out how to eat and not throw up, how to consume enough calories to give me strength, and how to avoid dehydration. It’s like an Olympic sport and I am one tired athlete, but I figure if I press on, I’ll turn a corner at any moment so I need to keep going.
All of this, and I had a thoracic surgery on Friday. But God is great, I have not needed any pain killers. I couldn’t take them last night because of the vomiting, and yet I managed to sleep well and without pain, so I’m pleasantly surprised that even though I can’t seem to catch a break with these stomach issues, at least I’m recovering well from something so major. Glass half full-ish.
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