Double Naps

Such an early start to the day to see the cardiologist, but important to establish the health of my heart. Thank God my heart is doing well, considering the cardiotoxic nature of the cancer meds. I also had an EKG which showed a good heart rhythm as well, which is comforting because the other meds I’m taking can burden the heart as well. We finished the visit with bloodwork to make sure that I’m doing what I can to protect my heart health with good cholesterol and blood sugar levels.

I am still working so hard to make good food choices, like this creamed salmon on crackers (with delicious smoked salmon all the way from Alaska - thank you!). It filled my belly so much and made me feel well nourished. 

The hardest part of the day was staying awake! I was so thoroughly exhausted, I ended up taking two naps on the sofa! It’s amazing how incredibly tired I could get. I wish I could shake the fatigue, but not yet. I just have to succumb to it in the meantime. 

Monster Twins

Sunday was a peaceful day of practicing piano and trying not to think too much about my MRI. I made rice and beans with pumpkin and I ate it with avocado, it's getting tastier. 

Here I am modeling the latest MRI fashion. I was nervous that my stomach might hurt too much or that the MRI would be too scary for me, but, to my surprise, it was actually easier than the breast MRI. I was on my back with my head trapped in a cage, which actually made the headphones better fitting so I could hear the music. A little Disney music to soothe me through it - "I know you, I danced with you once upon a dream..." and before I knew it, it was over. 

A quick lunch at home before I had to rush off to see the eye doctor who is an hour away. It's worth the trip to see him because he is incredibly kind and is very invested in seeing me get better. Unfortunately the medicine is not working as quickly as it could and I may need to make adjustments, but he does see some minute progress in my left eye and the ability to look to the right. I cannot change meds until I talk to the neurologist who prescribed them, but thankfully I see him on Wednesday. The eye doctor would also like to create a different treatment plan, which requires coordinating with the gastroenterologist because steroids could be a no-no for my stomach right now. And with all of these meds, I thought it prudent to see the cardiologist, which is scheduled for tomorrow. So many issues I'm trying to cure at the same time! So far the easiest task is dealing with the cancer! Bizarre. Speaking of bizarre, I had no idea I could twin with Mike Wazowski! Yep, I feel like a one-eyed monster! At least I still have my sense of humor. 

Habit Burger

Sshhh. I ate a burger for lunch today. I can’t remember the last time I had one, but I tried it today. I won’t make a habit out of it, I promise, but I was happy to get in 470 calories!

 

More Hydration

I met with the oncologist today and brought him up to speed. The last time we met, he briefly alluded to myasthenia but without evidence, it didn’t make sense. Now it makes more sense and he’s sad to see how things have progressed for me. But his focus is making sure I can finish all of my cancer treatments so once he hears more from the doctors at Penn, he’ll restart my infusions in two weeks and keep the ball rolling, likely through August. So today was just a hydration. 

I’ve been working on diligently eating. It’s not the joyful eating I remember, it’s still hard to finish my food, my stomach feels full or nauseous sometimes, and taste changes are still there, but I’m trying. Like my avocado toast for breakfast or the homemade crêpe with spinach, chicken and cheese for lunch. At least I’m in the kitchen, in my meditative space, being creative and finding some joy again. 

Winter Tan

The culmination of radiation hit me hard today. They called me from the radiation office to say I could be tired for the next week or two. And sure enough, twice I crashed on the sofa, the second time in the evening, I didn’t even hear Matt get home from work. How exhausting! 

I’m also left with this fabulous post-radiation winter tan, just in a rectangular shape around my chest and side. It may stay like that permanently or fade away. We’ll see, but thankfully my skin did well through it all and did not get burnt like happens to some people. 

Tomorrow I meet with the oncologist to catch him up on all he’s missed these past few weeks. Won’t he be surprised? 

End and Beginning

Today was my last day of radiation. I was sad to close that chapter, because it gave me a simple sense of purpose and was frankly one of the easiest things I've had to do so far in this process.  

I got to ring the bell (or actually bang the gong)! That was fun!

Then we drove to Penn Medicine in Philadelphia to meet with a new doctor. I met with her on the recommendation of my oncologist for an official second opinion. She was lovely and thoughtfully listened to everything that has been happening to me. She took copious notes and said that she will gather more information and meet with other "much smarter" clinicians to dig deeper into my case. Hopefully they will have a conference next Thursday and she will follow up with me on her findings. I am starting to believe that something really special has happened to me and I might be the key to helping the medical field discover new ways of doing things. I always thought I could invent something new, but never thought that it would come through immense pain and suffering. But here I am, hoping that my story and this journey could benefit another soul. 

Thank you to these amazing people who love me so much and were willing to cart me all the way to Philly! And to almost all of my radiation appointments! And to every doctor's appointment! Your love does not go unrecognized!

Mission Accomplished

Only one more radiation to go. I was kind of sad that I would not see these really lovely radiation techs after tomorrow. They have become a part of my daily routine and comforted me when I was only eating 200 calories and could barely move, or when I lost my vision and needed an arm to walk to the table. It is just another experience in my cancer journey to remember and recollect when I think back to these crazy times and everything I've had to go through. 

Tomorrow I meet with a doctor at Penn Medicine in Philadelphia. Hopefully she has some insight into everything that has been happening. 

In the meantime, filling my belly has been priority number one. I have been mentally craving a sandwich for two months, so I finally made one today - an avocado turkey BLT. Mission accomplished. 

Updated Schedule

Mondays are the check-in with the radiation oncologist. The doctor gave me good news today that he doesn't believe I need the additional days of radiation, the cone down they call it. It's a more focused form of radiation, but considering I came out of chemo with a pathologic complete response and the surgery went so well with completely clear margins, he does not see the benefit of adding more focused radiation on that area, so I am finished this Wednesday.

Matt said that I seemed kind of sad when he said so, and I think it not only caught me off guard, but it also left me feeling out of my comfort zone again. I've read about this happening to cancer patients, where you build a routine of doing something for your health and get a sense of security that people are looking out for you and then things change. You get used to your weekly or monthly appointments and then they say, oh, you can come every six months, and now you can come once a year; it can be a little disconcerting when medical professionals are checking on your health regularly and so closely and then release you back into the world. That's where you got sick in the first place...

But I digress, I am pleased that I have less radiation, and I will still return in a month for him to check on me, so that's good news all around. 

I have been laser focused in the meantime trying to get in more calories, so today I began the day with half a jalapeño bagel with scallion cream cheese, then I made a delicious turmeric, ginger, and coconut curry fish stew over jasmine rice. It was so good, I ate two bowls! For dinner, I made the kids acai bowls with granola and fruit and made a small one for myself. Then later when I made Matt a green salad with chicken, I made a small one for myself with a ton of ranch dressing (that's 130 calories per 2 tbsp!) and I ended up eating two bowls! I have to take it slowly and put on the weight little by little, otherwise I run the risk of gallstones, but I'm just happy I could eat and eat some more. 

I hope this is a sign of good things to come. 

Still Trying

The weekends are a nice reprieve from radiation, however I’m amazed at how quickly time has flown by. I only have seven more treatments left. Something about the consistency that has made it go by quickly. Even chemo felt quick in hindsight because it was also a time-limited experience. Everything else I’ve been going through feels like a never-ending saga. 

I’m still waiting for the medicine to work on my eyes. I have a lot of appointments coming up in the next two weeks. This Wednesday I take a trip to Philly to meet with a new oncologist for an official second opinion of my strange condition, which frankly is looking clearer by the day. I also have a follow up eye appointment next week and an EMG (electrical stimulation test) to check my nerves. I will also meet with my oncologist at the end of this week and get another hydration and update him on my tale of woe.

Lots to look forward to, and hopefully some more healing on the horizon. I tweaked my medicine today which helped me feel a little better. And my taste buds are slowly, so very slowly, super slowly, starting to come back a little, which makes me hopeful about eating and enjoying food again. The stomach pains the last few days have impacted my eating and that caused another couple of pounds to drop off…I can’t afford that. It’s dangerous and frankly I could be hospitalized if it goes any further, so I need to buckle down and eat at all costs. So today it was noodle soup for breakfast, beef and veggie puréed soup for lunch, and lasagna for dinner, with a side of ice cream! I’m trying…

This Is…

This is what beautiful flowers look like when your beautiful friend comes to visit. I had a great time and it was so wonderful catching up and finally getting to meet her super sweet boy! Thank you for coming over!

This is what my eyes look like without the patch on. That left eye is just hanging on for the ride, totally not interested in working. But with that good eye I watched a movie with my family and we spent time watching a tv show that sparked some fascinating conversation and built some great family connection. 

This is what a great weekend day looks like, despite slipping and falling in the kitchen. That was just the cherry on top. 

Would You Rather

Would you rather have good eyes or a good stomach? I’m stuck now between a rock and a hard place, but really I’m stuck with no choice. I began taking the medicine for my eyes yesterday afternoon. The orders are for a 1/2 pill three times a day for one week. The doctor made it clear it may not happen right away, and it may take more than a week, at which time I up the dose to a full pill three times a day. Whatever the success rate, I’m potentially bound to taking these pills for the long term in order to prevent the neuromuscular blockage from relapsing. However, the unfortunate side effect (as you and I both know by now, there’s always a side effect) just so happens to be stomach pains, nausea, diarrhea…blah blah blah. Yep, the domperidone took the stomach pains away and makes my food go down, and the pyridostigmine makes it hurt more and makes me not want to eat! Go figure. 

So today after radiation I sat down on the sofa again, waiting out the fatigue. I was waiting a long time. I made a lovely lunch for the children, who were home from school, and I ate a solid bowl of food, with the consequence of stomach pain and bathroom visits. 

I still can’t see well, and I’m still trying to eat. But I’m also trying to add some humor to this pretty miserable experience. 

One Against Many

I had an early appointment this morning with a retinal specialist. Back in December I felt like my vision was blurring a little bit more than usual, so I went to see the optometrist. She didn’t notice any particular changes in my prescription, but noticed something called a cotton wool spot and referred me to a retinal specialist to keep an eye on it (no pun intended). The retinal specialist noticed the cotton wool spot in my right eye and a small hemmorage in my left eye. He said this was not uncommon in patients undergoing cancer treatments because of the changes in blood counts, it can create these small blood spots but they're nothing to worry about and should resolve on their own. He was, however, very concerned about my eye motility and said I needed to see a neuro-ophthalmologist very soon, and thankfully I got in today! 

But first was radiation, looking crazy with a patch and glasses. 

The second eye doctor was almost an hour away but worth the drive. Shout out to my best driver - thank you for your love and care!

I found out that my prescription had nearly doubled in my left eye in a matter of a week, which was unbelievable and discouraging! The doctor was so incredibly kind and helpful; I was so glad to meet with him. He was 99% sure this is myasthenia gravis and told me to start the medication right away. He said it should help build back the communication between the nerves and the muscles, since my eyes are not responding to my signals, they can’t even follow his finger back and forth. How scary! 

I remember seeing a video a long time ago of kids fighting on a playground - one kid was on the ground while a crowd of like 8 to 10 kids were kicking and pummeling him. That’s what this feels like right now. When you’re diagnosed with cancer, your sole purpose is to beat the cancer, but what they don’t tell you is everything else you’re going to have to fight. 

It would feel like a fair fight if it was just me against cancer. With my army of supporters, I could battle this no problem, but this isn’t a fair fight. I’m being pummeled from all sides, and every time I think I’m getting better, something new comes forward to kick me down again. 

My dear friend sent me this poignant devotional based on Matthew 10:27 - 

“What I tell you in darkness” – watch where God puts you into darkness, and when you are there keep your mouth shut. Are you in the dark just now in your circumstances, or in your life with God? Then remain quiet. If you open your mouth in the dark, you will talk in the wrong mood: darkness is the time to listen. Don’t talk to other people about it; don’t read books to find out the reason of the darkness, but listen and heed. If you talk to other people, you cannot hear what God is saying. When you are in the dark, listen, and God will give you a very precious message for someone else when you get into the light.

I know I’m talking about being in a pit, but I’m listening God. Please tell me what this is all about. 

Radiation #11

Today marked more than half of my radiation, I only have 9 more to go. 

I did wake up early today, I've been having trouble with some stuffiness, so maybe it was a one-off kind of day, but I was EXHAUSTED. It was the kind of tired that I hadn't felt since chemo, like the "I can't get off the sofa" kind of tired. I just sat there and knew that I needed to just give in because my eyes were going to close whether I liked it or not. So I succumbed to a hard nap, right where I was sitting. 

It didn't give me tons of energy, but it was much needed. I managed to make some roasted butternut squash soup, which warmed my belly. And I ate three solid food meals today, so that's another bonus, even if they were very small portions. I also worked with a very knowledgeable nutritionist this evening who gave me some more advice on managing my gastroparesis, loading up on healthy calories, and supplementing my potential nutrient deficiency. 

Overall it was a good day, despite not being able to see well. Tomorrow I visit the retinal specialist and hopefully I can begin taking the medicine to help clear up this vision problem. Hopefully.