Goodbye 44! It was a heck of a ride!
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!
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.
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!
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!
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