When One Door Closes...

...another one opens. That's how the saying goes. I'd like to believe it, but sometimes doors just close. That's just what they do. And there are no guarantees that another one will open for us, or that a window will be cracked open or something. It sounds unfair, but this isn't about fairness. My mom and I have been talking lately about the "why" question, and I just refuse to ask it. Why is this happening to me? I don't know, but trying to answer the question is not productive or helpful in any way. What if it has nothing to do with me? What if this is about the people around me? I don't know. I only know that my goal is to live each day the best that I can, to manage my health and these circumstances, and give all my love to my family and friends and the people I come in contact with, not to ask why.

So while some doors have been closed for me right now, I need to rejoice in the things I can do - like finally get a new door for my house!

And finally be able to take the girl to her class, by myself!

And continue to make delicious meals like this mushroom, onion, and spinach omelet, to nourish myself!

And maybe, just maybe I will pray for an open door, and the faith needed to walk through it, whatever circumstances come my way. 

23

No, not Michael Jordan’s number. A birthday celebration. We celebrated my beautiful niece turning 23, and it was fun to reminisce over the years, seeing her grow into the amazing young woman she is today. We laughed, we ate, and appreciated our time together as a family. The joy in this life, the blessing of a new year, the generations sharing wisdom and love…I’m here for all of 

Don’t Stop Me Now

Yes, that title is in reference to the Queen song - listen here - because I spent the last 24 hours complaining about my circumstances, but that’s not going to stop me. I have to move forward, I have to keep going, no matter what. So today I took the bull by the horns and drove my car. First to the convenience store, then I took the girl to a friend’s house, then I picked her up, and then I drove into Princeton! Of course I drove extra cautiously, turning my head around more than usual, making sure I was very aware of my surroundings. But I did it. I had a wonderful night out with my mom to see a play - and of course she did the drive back home in the dark. That’s a challenge I’m not ready for yet. 

I have to keep living (with some venting and complaining interspersed every now and then). Thank you for listening. 

Myasthenia Gravis

That’s what I have. Because cancer wasn’t enough. But what does that mean?

I met with a neurologist at Penn Medicine this morning, he is an expert in the field of myasthenia gravis. I don’t know what I was hoping for…a crystal ball, a genie in a bottle? I went into the appointment looking for some hope.

Here’s the rundown - 

1. I have this rare autoimmune disorder now.

2. It’s manifesting itself as weakness in my eyes (ocular myasthenia) so I have double vision. Wearing an eye patch is my only way to see straight.

3. The prednisone should help to clear it up, in 95% of cases it does…but it’s still not working. There’s no way to know how much of it or how long it’ll take, it’s trial and error. I could be on this for life…or moved to other meds in the future. 

4. General myasthenia manifests itself in several other ways - weakened muscles (face, neck, arms, legs), an inability to swallow or speak, or respiratory distress. I don’t have this yet and if I do, it’s minor, maybe just in my neck and arms. 

5. I need to move forward with the thymectomy (surgery to remove my thymus) because it’ll give me better outcomes…over the next 5-10 years. That’s scheduled for June.

6. The next couple of years are going to be my biggest health challenge, trying to relieve the symptoms with medications, and trying to get this in remission. 

That last one was the hardest one to hear. No cure (still holding out hope the surgery will make that happen). Just trial and error and trying to create a stable environment with no flare ups. 

I was looking back through my blog posts before February 11th and I started to cry. I couldn’t hold back the tears, because there I was, completely unaware of what was coming my way…just like last June, before I read those words, breast cancer. I was already dealing with stuff and this came out of nowhere. And now my whole life just feels turned upside down again…at least with breast cancer I found a rockstar team that buckled down and laid out a game plan and it all made sense and I just had to walk the path and do the work. But this…this is nebulous. It’s rare. There are no straight answers. There’s no timeline. I have to just keep slogging along, with one eye, with little data, with little hope. To be told that the next couple of years will be challenging just hit me in the gut so hard…because I’m tired. I’m tired of not knowing what’s happening to me. What about work? What about driving? There are no fancy pink ribbons for myasthenia, no special 5K runs or local support groups. I’m isolated and alone with this ridiculous challenge, and it makes me mad and sad at the same time. 

I have so much to live for…this is not an end of the road story. This is a road under serious long term construction story, like I95 just north of Philly, a never-ending onslaught of “Men at Work” except in this case, woman at work, trying to piece her life back together, one day at a time, one minute at a time. 

Despite all of this news, I fulfilled a bucket list wish today and went to Longwood Gardens. It was hot and tiring, but so wonderful to be with my family surrounded by some of the most beautiful plants and flowers in the world. I took more pictures than I should have, but I was in awe of the beauty around me. Life is beautiful, even the prickly stuff, the not so pretty stuff. I’m getting there…hang in there with me, please. 

Beach Day

With the kids on spring break, we had to take advantage of the fantastic weather and take them to the beach. It was a hot and sunny day with a light breeze. We should’ve worn more sunscreen (I honestly didn’t think the April sun would burn this much!) but other than that, we had a fantastic time relaxing, soaking in the vitamin D, running from some freezing cold waves, building sand villages, and hunting for shells. 

Today was momentous for so many reasons…but the beach was definitely a special part for making family memories. 

Spring Break

The kids have been on spring break, so I’ve had some extra company around the house these days. They’re quiet and busy on their computers of course, but there are the added breakfasts, lunches, and dishes to occupy my time. Also taking the girl for a haircut today got me out of the house and got me a fresh looking almost-teenager.

I spent the morning cooking some yummy food, another delicious pot of chicken noodle soup and I took another stab at the bacalao salad, this time with ñame and yautia along with the tomatoes, avocados, olives, capers, and onions. 

Thankfully now that I’ve been tapering down the prednisone, my appetite is not as voracious as it was last week, which puts me a little bit more at ease. I felt like a bottomless pit and that was disheartening. I have enough to be disheartened about these days…didn’t need one more thing. My vision is still the same and my skin has been on fire for a week (shrugging shoulders emoji) I’m just doing what I can with what I’ve been given right now. 

Sunday

Today is Easter Sunday, but it’s also “…a special moment among the three Abrahamic faith traditions–Judaism, Christianity and Islam–as major annual observances will overlap this year.” This only happens three times a century! Read about it here - https://forusa.org/rep/

As I suspected, I was more tired today. I wasn’t expecting a middle of the night wake up from the boy, so that contributed to the extra exhaustion. But I spent the day cooking a lovely lunch of delicious food that came together at the last minute. Then I had piano practice and put together a Lego set. I finished the evening with a roasted and pickled veggie salad. Overall it was a peaceful and restful day.

I never even made it outside of the house, so hopefully tomorrow I can bounce back with some energy and take advantage of the sunshine. 

My prayer for you today is the same for me…that whatever you’re going through, that you would find even a pinhole of hope and hold on to it. Never let go. Darkness has descended upon humanity forever, but we have managed to survive because of hope. Do not be discouraged, even when you’re blind, even when your skin hurts, even when you’re scared and want to cry. Hold on, don’t give up. This life is a precious gift to be loved and lives to the fullest, don’t let it go. 

Activity

Phew. What a long and active day. We started the day with a walk around town. That turned into a walk around another town after lunch and ice cream. Then a walk around Target and the supermarket…I got over 15,000 steps today! I might regret that tomorrow (I’ve been tracking my day-after-activity status to see if I’m extra exhausted the next day), but the low-intensity exercise is good for me no matter what. My goal is to also add some moderate weight training to build back my muscle and strength, but baby steps. 

My body doesn’t feel the same. Something is off, but I’m not sure why or what it is. Since Wednesday my skin has felt weird, but only on my right side, and only from my port to just below my hip, like a box has been drawn on me. Bizarre. It feels like my skin is itchy, irritated, on fire and sensitive to touch, but no rash or outward signs of anything. Could it have been the antibiotic I took on Tuesday? No clue. It’s been challenging to swallow lately without a drink on hand; I feel the food getting stuck deep in my esophagus. Could this be the MG? No clue. Do I worry about it? Sometimes. Do I try to just press on with life as usual? Sure do. 

Speaking of life as usual, I’ll let you in on a little secret…(sshhhh) I drove my car today for the first time in two months!!! Just down the road to pick up the kids (don’t worry, I was accompanied by an adult!) but how free I felt to be able to drive again. I was extra cautious, checking all around me with my one eye. This might be the beginning of a new adventure. Baby steps. 

Give it a Break

Yesterday I sat outside and soaked up copious amounts of vitamin D. The sunshine was so strong and warm and energized my soul (the cool breeze helped too). I’ve continued my spring cleaning regiment by picking a new spot of the house to empty out and reorganize, but my energy is waning. The excess food and steroid is interfering with my sleep too, my exhaustion level today is at an all-time high, like I’m sleep-walking. 

So I spent some time in the recliner (the place where I’ll be sleeping again in a few months after my surgery), and I gave my right eye a break while reading a book. I’ve been wearing a contact in my right eye only so I can see for distance and my left eye I use for reading, so occasionally you can see me switching eyes, giving the other one a break. I’m the one that needs the break, of course. Taking care of my health has been a full time job and I couldn’t be more grateful to have the opportunity to do it, otherwise I’d be down river without a paddle, ready to drown. So I have a lot to be thankful for, I know. But I’m still working on the hopefulness part…it could still be weeks before my vision is restored and that’s just so discouraging. Tomorrow will be 8 weeks…2 months that I’ve been like this, that I’ve needed to wear a patch, that I haven’t been able to drive, that I’ve been stared at by strangers, and I’m tired of it. Exhaustion level: all-time high. 

Too Little, Too Much

I thought that gastroparesis was a curse for me, but it turned out in many ways to be a blessing for me. It was a “cure” for my gluttony and binge eating, if you could call it a cure, because it forced me not to eat too much. I just couldn’t fit it, the food would feel terrible. I’m not saying that’s a better way to live, but it was a shift from a lifetime of overeating. I lost weight, a significant amount of weight. It was getting scary, but then I stabilized. The domperidone helped me process my food and I was able to eat three small meals a day. I felt comfortable. I felt happier in my body than I had felt in a long time. 

And then came the myasthenia gravis and the prednisone. The prednisone that is supposed to be helping my eyes, instead it’s growing my appetite. I have been on a binger the past several days on this 60 mg dose and it makes me feel terrible all over again. All the progress, all the weight loss, the mindset shift, down the tubes. My stomach can’t get enough food, it’s like a bottomless pit again, and it’s not helping me in any way except creeping my weight back up on a daily basis. And now it’s scary all over again. 

I’m tired of the pendulum swinging so hard and fast back and forth. Can’t I just have a solid rest somewhere in the middle of these extremes where I can be happy with my body, eat the right amount of food, and stay healthy inside and out going forward? Is that too much to ask? I need to get away from this medicine…but I still need it to work already. Pure frustration. 

This is too much…

Cleaning

I have been busy spring cleaning. Every nook and cranny of the house is getting examined at some point. Kitchen drawers, linen closet, clothing, the dreaded basement clutter. I’ve been purging and cleaning and it feels good. Really good. When you have very little control over things (like your health, your eyesight), it feels good to be able to manage something. Cleaning is my cure right now. Speaking of cleaning, I even got my teeth cleaned today. First time since July, before I started chemo. And while I was pleased my teeth were in good shape considering all of the dry mouth I’ve had, it wasn’t just a normal cleaning. Because of my port, I needed to take an antibiotic to prevent potential infection. Nothing is ever really normal anymore. 

Back to cleaning…

Reconnecting

Today was a special day because I got to see family I haven’t seen in years, what a special treat! I got to reconnect with a cousin I haven’t seen in decades! I feel super lucky that despite my illness and the impediment it’s become in my life, I can still have these special moments. I don’t take for granted the time I have with people, that’s what living is all about. Life is too short to be mad at people. If they’re too toxic for you, then end it. But if you can still connect, then do it. Time with family and friends, making memories, this is love, this is life, and I’m overjoyed to be able to do it. 

No Joke

Yesterday was my infusion day and I was so glad to see a friend! Thank you for stopping by to keep me company and bring me gifts from my school kiddos! What a special treat!

I made it home but felt wiped, not because of the meds, but because of the other meds. The steroid messes with my sleep cycle a little bit and I was up super early so the afternoon felt like I was up for a two days! This called for a nap, with a cat. 

Today the warm weather brought on a walk, fresh air, good food, family time, spring cleaning, and a fresh bouquet of a Lego wildflowers!

All in all, my spirits are up. I’m on my highest dose of the steroid and no changes yet (except that my digestion is warped again), but I’m hopeful. Not sure why yet, I’ve been let down before. But I’m hopeful. And that’s no joke!