Nomad

It was very fitting that I had lunch today at Nomad Pizza. I’ve been a “wanderer” these days, stewing in my thoughts, from this way to that way. I keep looking to the horizon for my landing place but I just can’t see it yet. I’m in a very uncomfortable state right now, frustrated and crying, and I know it’s only going to get worse before it gets better. Thank you Suneeta for taking my mind off of things, even if only for a lunch time. I really needed it. 

Mydriasis

That’s the fancy word for dilating the pupils. I went to the eye doctor today (thank you Ed for the two hour drive!). Nothing new on the western front, but at least I got confirmation that my prescription has indeed changed, worsened since December. However I have to wait until after my surgery and after my infusions start to see what glasses/contacts I’ll need going forward. Until the dust settles and I see where everything lands, I have to just plod along, literally half blind. 

While my pupils were wide open, so were my insides. I ran to the bathroom so many times today, I couldn’t enjoy the day in the least. Even with all the pain and discomfort, I couldn’t pass up the opportunity to have ice cream with my girl! Love her! I’m grabbing every chance I get to cuddle my babies. Our time is too short. 

La Belle et la Bête

I’ve never spent so much time with myself before. I never liked being by myself so much, I always preferred to be in the company of others. But lately I’ve been happy by myself. I’ve been transformed, in a way. I’ve become much like the Beast. I don’t want to let others get to know me. I don’t want to have to explain myself. I think my spastic behaviors will frighten people. I’m comfortable at home, near the bathroom, near my bed, near some food. Everywhere else feels like a challenge. I don’t want any more challenges. Not right now. So I’m isolated in my castle. Much like the Beast, I am sensitive, I have feelings, I have a family that I love. But life has kind of turned on me and left me feeling alone and angry… I love how the story ends because I’m a sucker for a happy ending. I hope my fairytale ending comes soon. 

Radio Silent

The past couple of days I’ve been radio silent. I’ve been busy…I’ve been spending time with my family, time with my studies, time with my thoughts. My surgery is in 12 days, and whenever I think about it, I clam up and want to cry. My whole life flashes before my eyes and I begin to weep about the future I so long to see. And then I come back to the present, and I try to make a fist, and I begin to cry again over all the things I can’t do and how my life has changed so dramatically in less than a year. I get angry and frustrated with feeling like a helpless wet rag. 

Today I was watching “Chef’s Table” on Netflix. Such great storytelling about food by people who live and breathe the experience. Well this particular story was like none other for me. As I was being drawn into this magical journey of cooking, it all came crashing down. This particular chef, Sean Brock, was afflicted all of a sudden with double vision! He couldn’t function, he couldn’t see…he described in detail the horrific turn of events, how he spiraled out of control into substance abuse, and how it impacted his life and livelihood. It was all because he was struck by myasthenia gravis…just like me… I sat there watching the show, mouth agape, shaking my head. I feel your pain Sean, I’m in that boat of suffering with you… but I don’t have the liberty of just crashing and burning out of control. I have to somehow keep this wet rag standing until something comes along that can hold me up. 

I know there is hope for me, I just don’t see it right now. I don’t feel it. It’s not in my vision and so I feel tired and hopeless and scared and lonely. 

Each morning I wake up hoping I’ll feel better and each day I’m let down again. So I have to take the day in small doses. I have to sit in the sunshine and be grateful for those five minutes. Later will bring me something else. Now is just right now. Silent. 

13 Years Ago

Thirteen years ago was one of the greatest days of my life, because God blessed me with the privilege of motherhood. I humbly asked for this gift for many years, and it was everything I hoped for and more. No one gives you a manual on how to care for and raise a child, but Matt and I trusted the voice telling us which way we should go, and we’ve surrendered our own selves to the process. It’s a terrifying thing to love someone so much and yet have to give them the freedom to be themselves, to grow and change, to make mistakes and fall down, to get hurt and rebuild on their own. But I wouldn’t change it for the world. Thank you God for choosing me, to be her mother, to be a witness to her growth. Let me not be a stumbling block, but instead be like a cornerstone so that she can build a beautiful future. Happy Birthday, my girl! 

Hitting the Books

The alternative to hitting the books is hitting a wall. I've been relying on my brain a lot these days, and rightfully so, because my body hasn't had much to offer me in terms of strength and stability. I feel so incredibly grateful (here's my glass half full moment), so grateful that even post chemotherapy, my brain has stayed relatively sharp and I've been able to attack thinking tasks with ease. Not to say that reading, writing for my classes, and studying for quizzes has been a breeze, but I'm glad to be able to do it. That's the plus for me. It's been my motivator and what keeps me moving forward these days, because even though it's hard, I can also feel successful. It makes me feel like there's nothing I can't do. So here's to hitting the books!

Down to Earth

After that fabulous but terrifying recital, I needed to get down to business, I mean down to Earth. On Monday my parents and I planted seeds in our community garden plot. First of all, I’m so grateful to even have a garden plot in my town, how special! Just planting the seeds was SO hard! I couldn’t believe how sore I am today, my legs are toast! I can see how dramatically my fitness level has dropped since everything began. It’s so scary and amazing at the same time. 

I spared a little energy today to fill a bucket with fresh picked strawberries! So red, juicy and delicious! This is my favorite time of year. There’s no denying that I love winter time. But when fruit picking time comes I’m a whole different person! 

And to round out the night, the girl and I went back to the garden plot to water the seeds. I took a quiz tonight to have some breathing room for another quiz tomorrow, which is why I’m already in bed. I see now how challenging it is to do more than 1 or 2 things a day. I just don’t have the strength or stamina I used to have. 

I really hope bringing me into remission with MG will bring me back to my former self in some ways. Fingers crossed, surgery is T-17 days. Tick tock. 

Fear in Black and White

For everything that my body has been going through lately, I have not let that stop me from taking on a multitude of other challenges. Today was one of those incredible accomplishments I can look back on with pride (and a ton of relief!). I played in my first piano solo recital as a forty-five year old! 

I’ve been practicing this piece forever (yes, Amy, it was the Bartok piece!), but minutes before my turn, my mind went blank and I panicked that I wouldn’t remember how to play it or be able to read the music. I was half right. My fingers kind of remembered what to do but the keys felt so different than my piano at home, it was like dancing on a freshly waxed floor with super soft socks on my feet. I fumbled around a bit but finally regained my footing. Thirty seconds later I was finished and my spirit rejoined my body! Phew!

I will have many more fears to face in the coming weeks and months, but I’m glad to say that I faced and conquered this beauty. 

Unrecognizable

Tonight I cried in the shower. Not just sobbing, but wailing and weeping. The flood gates opened and I just cried and cried. I used to love taking showers, it was my perfect entrance to the evening time rest that would await me. It was the perfect way to wash away the worries of the day. Now taking a shower is like being stabbed by a million tiny, sharp, frozen daggers. From my neck and chest, down my back, my groin, my legs, my feet...all being stabbed. My itchy, stinging hands attempting to wash my angry body... I remember a time when I used to care about how I look and never once gave a second thought to how I feel. Now I am desperate not to feel this way and could care less about how I look. 

A wise person asked me this week how I have been coping with my feelings. I said I had some moments where I've tripped on that lump in my throat, where I wanted to cry but it wasn’t the right time. She mentioned a brilliant analogy she heard about how we all have this beach ball in the pool, and no matter how hard we try to submerge that beach ball, it will inevitably find its way back to the surface. I could clearly picture it, me putting my whole body on this ball and it flying across my waist, high up into the air for everyone to see. It's best to just put the ball on display at the appropriate time, that way it doesn't just appear as a surprise. I don't want to scare anyone, I don't want my family and friends to worry. So I need to remember to take time with my beach ball, to process and deal with all these heavy emotions. I don't recognize myself these days and it hurts so badly. Things that used to take only minutes take forever. I struggle to move my body around quickly. I struggle to open things, my fingers and my hands are so weak. Simple things like opening a package, getting dressed, or cutting my nails are laborious. 

I'm just mourning my former self. It makes me so sad and so scared at how quickly these changes appeared and it makes me want to cry...here's my beach ball everyone. 

The GI Side

I’ve been doing all the usual follow up appointments these days and it was time to see the gastroenterologist. He was pleased to see that I had gained some weight, much to my chagrin I must add. I gained 8 pounds in two months! The plan is to continue taking the domperidone as long as it continues to help, and in a few months I will repeat the gastric emptying study (once I can get my MG symptoms a little bit more stabilized) to see that the food is in fact moving through my system properly.

It’s hard to believe that just five months ago, I couldn’t even take in more than a protein drink a day, like no more than 200-300 calories. My stomach was literally paralyzed and just did not work at all. Now I’m eating three meals a day, and snacks, and dessert, and and and…well, let’s just say the prednisone has made me a bit hungrier. Tonight’s dinner - homemade pizza rolls. Yum. 

Unrelated Good News

Today I got some more good news, albeit unrelated to my current list of issues, it was nice to check it off the list. I had a follow up visit with the retinal specialist. Three months ago he saw a cotton wool spot and a small hemorrhage in my eyes. Today he examined my eyes and found nothing! As he suspected, the chemo and changes in my blood counts (anemia, etc.) had likely caused these spots but they had resolved themselves and my eyes are clear.  No more visits to the retinal specialist! Check!

Of course they had to dilate my eyes, so thankfully mom was able to cart me back home.

With a sweet puppy for a lunch date the day before and two rounds of good news, I’m feeling kinda lucky these days…but I won’t count my chickens just yet.

Reversal

I must admit, I haven’t been used to getting good news these days. In fact, I’ve almost come to not expect it anymore. Ever since my lumpectomy, I felt like someone opened a door and shoved me down a flight of never-ending stairs. I just keep bumping my head or shoulder or knee every day on the next step and the next. But today I got a call from a pharmacist through our insurance company. Last week I spoke with a nurse case manager and she asked if I needed any help. I told her I wanted more information about the MG meds I was hoping to begin. So today I received a call back and when I inquired about the infusions for MG and asked if they would interfere with my breast cancer treatments, she said not at all! I think I probably choked on my own spit for a second…wait, they won’t? Oh wait, they won’t! 

This was lovely music (albeit distant and foreign music) to my ears. This means that if I get approved, I can hopefully begin the MG infusions sometime after my surgery and hopefully begin to feel some relief from this unknown force that’s ailing me. Now of course comes the even greater hurdle of trying to get approved by the insurance company. But baby steps, I may not be able to handle too much good news at once! 

The Wonder Drug

Prednisone is considered by many to be a wonder drug. It’s a corticosteroid that magically reduces inflammation and heals all sorts of ailments, from herniated disks to Lupus. But I won’t sugar coat it, frankly I don’t love it. I’m taking it to correct my weakened eyes (ocular myasthenia) but for the little benefit I’ve received (I still have double vision), I’ve instead been handed a host of unfortunate and uncomfortable side effects. In a matter of 3 months, I went from having low to normal cholesterol to high cholesterol because of the prednisone. (Ask me how I know this? What do you think I was researching on my phone at 4 am after a second trip to the bathroom?) The urge to pee is unrelenting, all day and night.  The constant hunger and weight gain are frustrating to say the least. I feel a near-constant neuropathic pain around my whole body all day. I bruise easily and heal slowly. 

The wonder drug has been far from wonderful. I feel like a shell of myself. Today was one of those woe-is-me kinda days, feeling sorry for how miserable I feel - the achiness and weakness, the stiffness and spasticity. I’m ready for bed, praying tomorrow is a better day.

Mother Earth

I started Mother's Day in my favorite way - with breakfast in bed! A nice hot cup of tea, a freshly baked bagel, and Matt's delicious scrambled eggs. I felt like a princess, relaxing with my meal, watching a Korean drama. I lingered in this space for a while...

Later on we took to the ground, tending the soil in our community garden plot. We tilled and weeded in preparation for what I hope will be a successful gardening season. It is my first year with a garden plot, so in the same way I have to approach my health challenges, I am approaching this land - with grace and forgiveness.  I do not know what to do, therefore whatever it yields will be a blessing - much in the same way I hope that my body will respond, hopefully with an abundance of recovery. 

The Boys

I spent most of the day sitting at my computer. I made the decision to go back to school, so I spent my time getting my binders organized for my courses and wrapping my head around the workload. Then we went out for a delicious Thai dinner. Finally I built up the courage to go out for a quick evening walk with my boys. It was a pretty sedentary day but fulfilling kinda day. 

The Lows and Highs

This morning I wanted to scream into the void, a yell so loud that my head could explode. I wanted to cry and scream, for no reason other than a general sense of helplessness. I’m taking disability to a whole new level when I can’t even make it to the bathroom. The lows.

I managed to pull myself together to get to my infusion. I asked the oncologist to look into the new MG infusion therapy I want to begin, to ensure there won’t be any complications…and as it turns out, there might be. Because why would someone with MG also have breast cancer and need monoclonal antibody treatments at the same time? Sure, why doesn’t that exist? Anyone? Oh, just me? Yes. Apparently. So what does that mean? It means that the medicine that could give me immediate relief of MG symptoms would interfere with my cancer treatment so it has to wait until I finish…in August. So what’s a whole summer with no relief and an eye patch? Never saw someone swimming in a pool or at the beach or trying to ride a bike with an eye patch? Yeah, me neither. The lows.

While I was at my infusion, a friend came to see me! How lucky am I that she came all the way back from Hong Kong via San Francisco and made time in her journey to visit with me! A fresh walk, a nice lunch, and some bubble tea made for a perfect date! Thank you for thinking of me and making me feel so special, I’ll never forget your kindness! I’m beyond touched! The highs.

As I recovered on my sofa, trying not to let the heat melt me to a puddle, I built up the strength to go upstairs and turn on the air conditioner. I didn’t want to do it, I figured what’s one warm night. But then I thought if I don’t get good sleep, my body will rebel and there will be no hope of me being kind to my family, so I gave in. And Matt said me getting good sleep is worth the cost. That’s when I lost it and cried. I cried like a blubbering baby because I’m so vulnerable right now and I feel like such a burden. To feel his genuine love for me makes me feel held tightly and so deeply grateful. I love that man. The highs.

Some days are mostly all good, some are the opposite of good. But most days are a combination of lows and highs that ride me through a rollercoaster of emotions. I try to hold on to those highs, to help me coast through the lows that want to drown me. 

Fragility

I never saw myself as fragile. Growing up with an older brother, I needed to be able to stand up for myself. Up until last year I was a first degree black belt in taekwondo, doing hundreds of kicks, burpees, and jumping jacks each class. I remember when I was 9 months pregnant with Eviana and single-handedly helping Matt get into the shower or the car because he herniated his disk, I felt unstoppable. But as I took a walk this afternoon with my grandmother, I couldn’t help but feel fragile. If she fell down, could I help her? I could barely muster the strength in my hands to open a cheese stick this morning, how could I possibly help a grown adult? 

I suddenly had this deluded bubble burst above my head - hey Laurie, remember when you thought you’d always be strong and you could one day take care of your own elderly parents? POP! 

That new voice is saying - hey Laurie, you’re not as strong as you once were, get over it, and learn to live a simple life by asking for help and using accommodations and modifications, and don’t be embarrassed, and take it easy, give yourself some rest breaks, and by the way, you’ll be fine. 

Pre-Operative

Today was a LONG day in Philadelphia. My mother nervously, albeit graciously, drove me to my appointment with the thoracic surgeon. I waited and waited…then I signed the consent forms and asked as many pertinent questions I could think of. Then I waited and waited…and got my pre-operative bloodwork and EKG completed. Then I waited and waited…and got my pre-operative pulmonary test completed. Finally we rushed home after being gone for almost 7 hours! 

I am all set for my thymectomy (thymus removal) in June, just a month away! The purpose is to alleviate (or no longer exacerbate) my myasthenia symptoms. As luck would have it, I also got a call back from my neurologist at Penn who will get the ball rolling on a new treatment plan for me after my surgery. In the meantime, I will begin tapering down the prednisone (thank God) and hopefully something better will be waiting for me on the other side of this surgery. I can only hope.

It’s not all doom and gloom tonight. The kids and I went out to IHOP for dinner, did some shopping at Target, and had dessert at Rita’s. Lots accomplished, a lot of ground was covered, and the foundation for future plans are being put in place. Overall I call the day a win!

Why Can't I?

My son and I were practicing Somewhere Over the Rainbow this evening and he played the ending a little too fast, so I sang it out slowly for him...

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can't I?

Those words lingered in my ears as I went to take a shower. I felt an overwhelming sadness and frustration and I cried. I told Matt this evening that I'm not even hopeful about the surgery because I just feel a sense of hopelessness with time, especially when the neurologist tells me that the next year or two will be the most challenging for me as they try and figure out how to get me into remission. So I've resigned myself to just feeling utterly (fill in the blank --- frustrated, angry, sad, lonely, weak, scared ---) all of the time. 

Sure, I still have hope in life. Yes, I still find love and joy in each day.  But deep down inside, in those parts that we don't like to hang out on the clothesline for everyone to stare at all day because it makes them feel uncomfortable, down there I will be aching and crying for something good, pleading for help and answers and cures... like I am right now. 

What the Day Brings

I've wasted a lot of hours questioning and resisting my fatigue. Why am I so tired? What's the explanation for it? Was it something that I ate? Was it the quality (or lack of quality) sleep? Is it the weather? Did I do something the day before? Sometimes I just can't explain it, and that can be frustrating, especially when we are highly trained in American society to push beyond our exhaustion and do something. But I have been learning over these many months at home to settle down into my fatigue, to show myself some grace and simply accept that today is a tired day and to just live in my tiredness for the time being. It won't last forever, so I have to take the day as it is, and hope that tomorrow brings me more energy. 

Today brought me a special gift instead - I was gifted a visit from a dear friend and that brightened my heart and filled my soul! Sometimes God entwines your spirit with people who complement you, whose values and energy so closely match your own. Thank you, my friend, for coming to see me, for "hearing" me (I owe you $300, at $150 per hour!), and for always being yourself.

Grounded

I have said it before because I am keenly aware that everyone has something going on. My health challenges are my own but everyone has something, be it financial struggles, relationship distress, job insecurity, and these are a very big deal, as much of a deal as health challenges. But in the midst of the struggles and pain, it’s important to stay grounded in reality, that this life is so precious and valuable, and to never give up hope. 

These girls right here are anchors, my kindred grounded spirits. We are like the sandbags holding down the hot air balloons that try to lift us away into chaos. And when one of us gets a little untethered, the other two are ready with heels dug in. I love you two with all my heart! Thank you for staying grounded with me!

The Day After

What do you do the day after your birthday? You go to the doctor of course. This time just for an annual check-up (not like I haven’t been checking up all along), but it was good to keep my GP in the loop and to hear her concern for my mental, as well as my physical, health. She encouraged me to find someone to talk to about everything I’ve been going through, and to get some exercise, like walking, into my routine. Check and check.

It was a busy day after the appointment, with a squash tournament and town parade and amusement fair. We had front row seats, like watching the Coronation parade go by, just without the rain (and much less pomp and circumstance). 

Finally we closed out the day with some delicious ice cream! 

I got plenty of sunshine and steps for the day…now it’s time for these old bones to rest! 

Hello 45!

Hi there 45, it’s me, Laurie. I just came out of 44 and it was a mind-bender. Super stressful at times. Like I was kicked down a hill, and just when I thought I plateaued, I kept on rolling down another steep hill. I laughed, I cried, I prayed and pleaded for help and comfort. And now here I am, knocking on your door, 45. And I’m grateful to be here. I cried this morning because I was so grateful. I wanted so badly to get here. But I have to ask, what do you have in store for me? Good things I hope. I know there’s a surgery hiding around the corner, I know there are infusions every three weeks through at least August. But what else do you have 45? More medications? New medications? My eyesight? Better health? More wisdom? More patience? For better or for worse, I’ll take it, because I wanted to get here. That’s the blessing. Just be gentle with me, please. I’m feeling a little vulnerable and fragile at the moment. I have a weakness in my hand that scares me. I have a tingling neuropathy around my body that makes me irritable all day. So can we just ease into this, 45? I’ll gladly take this to the end with you, just go easy on me. Thanks 45, I’m happy to be here! 

Goodbye 44!

Goodness, what a struggle to get here, but I’m over the moon to even be able to say I made it through 44! What a blessing! I haven’t done it alone, I’ve had an incredible support network, prayers heaped upon prayers, the miracle of modern medicine, hope, lots and lots of hope…I could go on. I was just telling my daughter the other day that the medicines I’m taking as part of my breast cancer treatment did not exist for women over 10 years ago. While very sad for those who were lost to this disease decades ago, it’s a miraculous leap forward for current generations, present company included, and I’m incredibly grateful. So amen to living! To breathing! To thriving! To surviving! To hoping! To loving! 

Goodbye 44! It was a heck of a ride! 

Midweek Visits

I never take for granted when my aunt comes to visit me during the week. She makes the drive to my house each week, which I know is a challenge for her and makes her uncomfortable sometimes. But she says her prayers and takes the journey because it's important to her to see me, and my heart is always so grateful when she does. 

Today I took her to my local coffee shop, then we came home and I helped her put an app on her phone. We talked about how we need to be willing to receive help from others as much as we want to give help. I completely understand that, especially these days, and reiterated to her how important it is to keep taking care of ourselves, otherwise we won't have any way to give back. Afterwards, she anointed me and went on her way. 

Gracias Titi, por visitar me cada semana. Te quiero con todo mi corazon! 

Lazy Monday Too

I had such a rotten night of sleep last night, too many  bathroom breaks. I was up at least four times between bedtime and sunrise. So today was another lazy day, rolling out of bed late, not breakfast but bunch instead. Some tv, some roasted veggies for dinner and of course some ice cream for dessert. I even got some puzzle time in with my mom at a local library.