Lazy, Rainy Sunday

April Showers Bring May Flowers…today is the last day of April and it’s been showering all day, a deluge most of the day, in fact! (Also a very special birthday to my very best friend!)

A great way to spend a rainy Sunday is to binge watch shows on Netflix and take a nap! We did get out to the supermarket but that was the extent of my activity today. A nap has become essential for some reason, my body is very tired these days, and while I can’t put my finger on why, I just need to go with the flow. 

Now it’s bedtime and as I lay here without my patch, listening to the rain, I can’t help but ask for showers of blessings, maybe even a deluge of blessings, to help my eyes get better, to help my Myasthenia Gravis get better, to help my skin neuropathy get better. 

Reflections

I waited the long 13 weeks to finally get my hair cut. It felt so good to refresh my hair and get started on the growing out process. Thankfully it’s grown in thick and healthy. Now I wait for this lovely lady to cut it again in 13 weeks! 

Then I got to celebrate a dear friend’s milestone 70th birthday. As I see the people I love and know around me growing older, I can’t help but reflect on my own aging and growing process. I see how life has changed for them, the aches and pains associated with aging, the memory loss or general forgetfulness, their outlooks on life shifting. I’ve been wracked with my own aches and pains, for sure, and I was struck by the chemo brain fog last year, albeit temporarily. However, I just can’t help but wish for these days long in the future, when I can reach these big milestones and be thankful to God that I made it that far. I have to take medicine for breast cancer for the next 10 years! I want to see those days when I can stop taking those meds. I want to celebrate that birthday by not renewing that prescription! I wish I knew what my MG treatment will look like in the coming months, years, and decades. In the meantime, I’m happy to celebrate others and their big achievements. 

Au Café

I had the privilege of meeting a lovely friend this afternoon au café, at the local coffee shop. My friend is French and we talked about how the café is embedded in the French cultural experience, kids meeting up after school, friends and dates midday, it’s a very normal French experience. Even though the weather was gloomy, cold, and rainy, I walked there and seeing her smile was like a ray of sunshine! I was so happy to catch up and hear about life outside of my world. I know people think I have a lot going on, and I do, and it kind of consumes my life, I also know that everyone else also has a life and things happening to them, for better or for worse, and I want to still be a part of all of that too. It’s not a burden, I promise. If there’s one thing that I’ve been learning in this time at home, it’s how to balance the stress of the outside world so that it doesn’t consume me and bring me down from my place of healing. 

So any time you want to meet up for a bite to eat, or a delicious cappuccino at the local café, I’d be happy to get together! I want to know what’s happening outside of my own stuff! 

Getting my steps in on a rainy day

Chicken Soup for the Soul

I had an appointment this morning and immediately went to visit family afterwards. It was so nice to see my aunt and cousin. We sat around the table with bowls of chicken noodle soup and laughed about how we’re getting old, falling apart, and each have something that ails us. Oh what’s your problem? Your brain? Your knee? Your eyes? Your back?

It’s good for the soul to laugh about it a little bit; makes it feel like less of a burden. We all have something. My problems are no bigger or smaller than anyone else’s. 

Overstimulated

I remember when I was 8 or 9 years old and my brother and his best friend thought it would be hilarious to hold me down and tickle me to death. It wasn’t hilarious at all.

I remember when I was 11 years old and I was flying home from a trip to Aruba. It was the closest to the equator I had gone and my pale white skin was scorched by the sun, a proper second degree burn, and on the plane, the air from overhead blowing on my face felt like I was being stabbed by 1000 needles. 

Well, for the past three weeks I’ve been experiencing what I can only describe as neuropathy on my whole torso down to my hip joints. My skin feels tingly, itchy, and  sunburned all at the same time. Every time my shirt brushes against my skin. I’m immediately brought back to that tickle torture. It’s all day and night my skin is on fire and it’s exhausting. 

I don’t have any skin issues, no rash just super sensitive skin to any touch. 

Needless to say, I have felt extremely overstimulated. Perhaps this is what is causing my extreme fatigue. The past few days I haven’t been able to keep my eyes open, while watching TV, reading a book, or as a passenger in the car…so very tired, it’s unexplainable I’ve had to take naps just to make it to evening time.

The Long Haul

Today was a long haul in more than one way. I had to take a trip back to Philly for my appointment with the neuro-ophthalmologist. The drive is an hour, so there’s that. Then the appointment took 3 1/2 hours! Most of that was waiting!! Then the drive home, another hour. That was the first long haul. 

The second long haul is my vision restoration. The “good” news (with a little g) is that he does see some improvement in my eye mobility, which means the prednisone is working. Maybe not as fast as it could be, but hopeful nonetheless. So he wants me to continue on the prednisone at this dose (40 mg) for a little while longer, while he consults with the other neurologist I saw about starting me on a new, stronger medication. No promises made on when I’ll be able to see again. The second long haul. 

At least I got to enjoy a lunch with my hot driver. 

The Waiting Game

I think if they made a game show called “The Waiting Game” and offered people a pot of gold, there would be a line around the city for people to sign up, only for everyone to just fall away when they see how much patience is needed to wait for something, even if it’s something you really want, like money, or a life partner, or a job. Or the ever elusive solution to your health problems. To wait for those answers is a trial of faith and hope that is like pressing sand into a pearl or coal into a diamond. 

“Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.”

‭‭Psalms‬ ‭27‬:‭14‬ 

Yes. Wait. It takes courage to wait. We don’t think of courage and waiting as going hand in hand. But it’s not for the faint of heart. 

So tonight I go to bed early because I’m tired of feeling this ache in my body, the burning sensation on my skin. It’s exhausting. And I’m getting tired of waiting. Waiting for my vision to return, waiting for answers. 

But I also go to bed with a prayer on my lips for my dad and my cousin, who are both in the hospital this evening, and I am home in my bed. What a cruel world sometimes; the waiting for answers continues. Tomorrow I see the Neuro-ophthalmologist again at Penn, hoping for more hope to keep up my courage. 

Spring Goals

I have had my sights set on some small goals. One of those is to get some steps in each day. Yesterday I told Matt I wanted to walk, but then when the time came, I wanted to give it a hard pass. I was so spent for some reason, I even took a nap after my infusion. But I managed to lift myself up off the sofa and put one foot in front of the other and take that walk with Matt. I’m so grateful for his patience with me. So today was another chance to reach those goals. We went for a walk with my parents, and when we reached the return point, I suggested that Matt and I continue on for a longer walk. Look at me, pushing the envelope! But I made it to 10K steps thanks to that walk, goal achieved! 

The return is always lovely, when I get to see (and smell) the beautiful flowers and flowering trees in our garden. Enjoy the view!

Same Ol’

Today was my infusion Friday. No special tricks, no hydration, just back to my regularly scheduled programming. I asked the oncologist why my skin feels like it’s on fire, this weird tingling and pain like neuropathy all over my torso and hips. The answer - unknown. That’s how I’ve been living these days, in the unknown. And I have to be ok with that. I also started taking an antibiotic for something else and that has me running to the bathroom all day again. So I’ve been tired and disconnected all day today. Thankfully Matt held me to my word that I needed to get in a walk, so we did. Now I just need a night of good sleep. 

420

Even though today is my aunt’s birthday, I am grateful that I was able to celebrate with her yesterday. What a special woman - the matriarch of the family, dedicated to prayer and self-sacrifice. She’s a second mother to me, a kindred Taurus (stubborn food lovers rejoice), a former teacher (I followed in her footsteps), and an extroverted conversationalist (apple/tree). I lived with her for four years before getting married, it was a special time in my life. She holds a special place in my heart and has probably knocked on heaven’s door on my behalf more than anyone I know. My heart is full of so much love for her, God bless my Titi on her special day and always! 

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!