No Change

I was so delighted to stop taking the mestinon because of the grief it has caused me, and much to my chagrin, I was woken up, not once, but twice, in the middle of the night to use the bathroom. That was the big screw you I was hoping for...not. It was nice to eat breakfast without a stomach ache to follow. All of my meals were a little easier to handle without that medicine, and I'm hoping I can also start gaining some weight, too, without all of the bathroom breaks.

I started the prednisone this morning to high hopes. No changes yet, but I will probably cry the day I can see straight again. 

Too Many Chefs

I’m exhausted today, but thankfully my driver kept me on pace for all of my appointments. I couldn’t do it without you Ed!

First I met with the neurologist. His personality leaves much to be desired, but he went step by step explaining what I need to know moving forward with myasthenia gravis. The blood work does confirm it and so he’s prescribing a course of prednisone to help get the eyes working again. I told him the mestinon hasn’t been working and has instead caused me so much stomach pain and diarrhea, even in the middle of the night, so he said I could stop those meds - thank God! The days of having little to no meds are still a long ways away…I’m just trading one for the other right now, but I’m hopeful at least this one could help me. And also hopeful that I can gain some weight back without feeling sick all the time.

I just want to be able to see again. Do you know what it is to be blind for a month? I have tripped and fallen. I’ve bumped into things and people. It’s demoralizing. I’m so tired of it. 

Next I saw the eye doctor. He encouraged me to start the prednisone, but this is the trouble with working with several doctors, they all have a different philosophy on how they would run a course of meds. He would start me high and taper off. The neurologist will start me low and keep me there. The neuro-ophthalmologist would start low, taper up and then down again. Too many differences and not enough information to know which way is best…I just need to move forward either way. He was perceptive enough to say that right now I have too many chefs in the kitchen and he would step aside for my treatment. I appreciated that because I need to focus my efforts with just one doctor. I will continue to work with this neurologist until I meet with the neurologist at Penn, but that’s not for another month, my eyes couldn’t wait that long. 

I came home from a long day of appointments to this wonderful surprise! How thoughtful of you my friend! I’m touched that you’re thinking of me and sent me this beautiful plant to care for, it takes my mind off of my troubles! Thank you so much!

My Turn to Win

They won!! The Princeton men's basketball team won the Ivy League championship and earned the opportunity to play in the March Madness playoffs. I'm so excited for them, but I can't help but wonder, when is it my turn to win? I know sometimes people will suffer debilitating illnesses for years. I've only been suffering since June, to be fair. But I can't help but question, when is it my turn to be on the winning side? I'm willing to put in the work and push through the pain like these players have, I just need the chance. 

I have a few appointments this week with the neurologist, eye doctor, and gastroenterologist. Fingers crossed I get some real answers and movement forward toward the winning side, the seeing side, the healing side. 

I've got a great team supporting supporting my game!

One Step Closer

Not for me! For the Princeton men’s basketball team! I went to the Ivy League semi-finals today and watched a nail biter with Princeton vs Penn. They won, they made it to the finals tomorrow!

I bought these tickets four days before my double vision started. I had no idea this would happen to me, I had no notion that I would be watching this game with one eye! It frustrates me that I struggle to plan for the future because I never know what condition I’ll be in, what ailment will keep me from enjoying myself, what disease will keep me home. The kids will be on spring break soon and I can’t even plan activities with them because I just don’t know, and the unknown is terribly frustrating. I’m not one step closer, that’s for sure. 

I just have to take it as it comes and enjoy the game (of life) anyway, even if it’s with one eye! Go Princeton! 

Back to Infusions

I’ve gone back to the routine. I started my herceptin and kanjinti infusions again today after a two month break. The side effects are at worst maybe some diarrhea but who’s counting at this point, I already have that on the regular! 

I also get to start tamoxifen. Yep, another drug. This one will suppress my estrogen because my tumor had some estrogen positive receptors, so I’ll be looking forward to some hot flashes - yippee! I could only hope that’s the worst thing that happens.  

Still no movement on the eyes, so I have to keep increasing my medication and cross my fingers (or just look at them with both eyes and they’ll be crossed that way!!). 

Here’s to hoping for movement in a positive direction. 

You Tried

My mom and I went out for some self care today because I didn’t have any doctors appointments. We had massages, tea, and scones, and I looked for some clothes to fit me since all of my clothes are hanging on me since I’ve lost over 40 pounds! The best part was winning the award! My mom bought it for me the second I saw it on the shelf in the store - most appropriate trophy for me right now! I tried!

Shrugging Shoulders

I haven't seen the breast surgeon since the week and a half after my surgery. It was wonderful to see her again. She sat down and wanted to hear what's been going on and she gave me her honest feedback as a surgeon when it comes to the thymoma issue. She said she would try all the medications first to see if it helps, and if it doesn't, then turn to surgery as a last resort. That was fair, I thought. I just need something to work, I can't be blind like this forever. 

Thankfully my surgery recovery looks great, she was pleased with the outcome. Going forward, I need another mammogram when I finish my cancer treatments in August, and need to get one every six months on the left side and every year on the right. Not complicated. 

So far the cancer treatment has been the easiest part of this whole process... who would have guessed that back in July? (shrugging shoulders emoji)

Revelations

Here I was on my way home from Penn in Philadelphia. I’m covering my eyes because they were dilated and the brightness felt like looking directly into the sun. Today I met with a neuro-ophthalmologist. He ran through my story and did his assessment of my eyes and reflexes. He was ready to send me for more lab work in an effort to figure out what could be happening to me. He had the nurse dilate my eyes and left to meet with other patients. I was getting anxious because the drive back home takes an hour and I wanted to get home to the children. I felt the clock ticking in my head and I fidgeted through my phone. Just moments before the doctor returned, I saw an email from Quest Diagnostics that my blood test results were posted! I couldn’t believe it, the providential timing! I’ve been waiting three weeks! As soon as the doctor returned, I showed him the results and this immediately changed his direction for me. Based on the results, it looks as if I most definitely have myasthenia gravis. It was a wonderful confirmation to finally hear a diagnosis, but what happened next was just the beginning. He suggested I up the dose of my medication… in the hopes that it’ll help my eyes. There was no definitive answer as to how soon this could actually be fixed, and taking all of this medication might not really be making any difference at all. He also suggested that I begin a course of prednisone, which he thinks could help fix my vision, but I need to first speak to my other physicians to see if this is safe, with the cancer treatments and gastroparesis treatments, on top of considering the side effects of long-term steroid use. And finally he suggested that I meet with the thoracic surgeon to determine if I should have the thymoma removed. You remember, right? The big open chest surgery? Yes, that one. The one I had put to rest and out of my mind. It’s crept back into my life and it’s terrifyingly rejoining the conversation. I’m at a loss for words and have a lot of processing to do with these new revelations. 

A Just Balance

I was encouraged today to read Proverbs 16:18, which reminds us to avoid being prideful because it leads to destruction. While I was there, I read the whole chapter and this verse spoke to me - 

“A just balance and scales belong to the Lord; All the weights of the bag are His concern.” 

Proverbs‬ ‭16‬:‭11‬ 

You see, today I had the privilege of visiting my grandmother. We went for a walk on such a beautiful day. We walked through a cemetery and you can’t help but reflect on life and death, especially with everything that’s gone on. Please bear with me with a gentle heart as I recount to you my feelings…

While we were never really close when I was growing up, I love my grandmother and cherish our time together. But ever since my diagnosis, my feelings toward her have warped a little. I have felt bitterness and anger in my heart, because I dared to believe that I’m so young and she’s so old, and why has God not spared me this horrible and frustrating cancer journey, and she lives with dementia, enjoying each day as if it is brand new again without a care in the world. Why does she get to live a long, peaceful life and I have to suffer the fear of dying and leaving my family behind, especially my children. My heart breaks when I think about the fear of recurrence and all the pitfalls that might be ahead of me, and yet she lives to the ripe old age of 92 without worry or consequence. The unfairness. And then came Proverbs 16:11, jumping off the page and smacking me silly. Who am I to judge how long she should live? Or me? The weights of that scale are not in my hand…and thank God they are not. I would be cruel and unfair, I see. And even though that’s how I feel I’m being treated, I know it’s not true. We are two different people with different purposes on this Earth. I am sad that she no longer remembers things, I wouldn’t want that for myself. So instead I have a different journey, and I have to accept that. 

Thank you Lord for humbling me, for reminding me that you are the divine king who does not err in judgment. Continue to work on this selfish heart, fill it to overflowing with love, especially for my grandmother.

Finally Even

My hair has finally all grown out even…not bad considering my last chemo was Nov 1st. My hairdresser is so impressed by how quickly it all grew back, and now my cut is finally even with the new growth. Now comes the hard part of growing it out. I scheduled an appointment for two months from now, so this will require patience and maybe some hair products, which I’m dreading. It’s not my thing, but like most of what I’ve been going through, I just need to suck it up, get used to it, and move on for the sake of living a happy life. 

Thank you Theresa for the fresh cut! Always feel pretty afterwards!

I tried a new disposable patch today, which felt super comfortable and made my head hurt less without a strap around my head. I managed to dance the afternoon away with loud music in the living room. It felt so good! 

And then I tried to remove the patch…and it ripped at my skin and even took a few eyebrow hairs! Now I’m like a one-eyed, red-faced raccoon! Can’t I have anything go great? It’s always up and down, up and down! 

Out on the Town

While I’ve had plenty of doctors appointments during the day, like my echocardiogram today, I haven’t left my house for an outing at night in almost three weeks. I haven’t been able to drive, because of the not seeing thing. 

But tonight was so lovely, going to see a play. I felt a little normal, which was so nice, to enjoy a little of the life I had before. Thank you, my friend, for the invite! And thank you for driving! It was wonderful!!

In the Pit, Again

I get like this every few days. Sad. Like a sadness that washes over me and I feel like I'm drowning. When I wake up and still have double vision, my heart sinks and the sadness overwhelms me. I feel helpless and I just want to cry and scream from deep inside my chest, like a floodgate that's been shut tight, keeping back the waters, finally released. I'm tired from waking in the middle of the night to use the bathroom, and the tiredness makes me vulnerable to my sadness. I'm just sitting here in the pit again, crying to get out. When am I getting out? 

More Appointments

How many appointments can you have in one day? It can be exhausting, especially for my caregivers, but I'm so grateful that with each appointment I get one step closer to answers. 

I started out the day with an ultrasound of my armpit. At my last CT scan, they noticed a lump in my armpit and thought it should be investigated. My oncologist suggested it was a seroma, as did the lymphatic PT, which is basically a fluid-filled sac that develops in the hollow spaces after a surgery. Since I was opened up and some lymph nodes were removed, this small lump developed in that space. The report already came out and pretty much confirmed it. Now that's fast service!

This afternoon I had an EMG performed, an electromyography. This was to check the nerve-neuron connection and investigate some minor neuropathy in my toes. The shocks were overwhelming at times, which is why my hands are cupped, as I kept tapping myself out of the situation. I had electrical shocks through a device, but also through a fine needle stuck into my legs. Yikes! But before I knew it, it was over. I'm hoping all of these tests yield some results. 

I'm still waiting on the bloodwork from two weeks ago to look for the myasthenia gravis antibodies. I have no concrete answers on that yet, and the medicine is not working to make my eyes better. I'm only left with stomach pains and diarrhea on an all-day basis with no cure for my eyes. It's incredibly frustrating because I'm trapped in my house, I cannot drive anywhere on my own to help myself or my family. I feel imprisoned by my blindness and so very helpless. The report has already been posted for the brain MRI I had on Monday, and apparently my brain looks good from what I can tell. Thank God, because I don't have much more going for me these days except for my brain!