Thank you my friend for coming today, and for being so sweet! I’m so grateful for your love and care!
So Sweet
Ask and you shall receive. I think that’s how it goes. I’ve been asking for some things lately, like my eyesight being fixed, like no side effects of medication, like a cure for the myasthenia…but, well, you know. The answer is wait. So when I asked for comfort and care and distraction, I got friends and family, who visit me and take my mind off of the waiting.
Escapism
For as long as time, people have used entertainment to escape the dullness or tragedy of life. And while I am all about living in the present, I also need an escape from the mundane frustrations of being blind and immobile. So today my mom and I got away to see a movie together, her first one since the pandemic began three years ago! It was fun to put reality on hold for a couple of hours and live in someone else's imagination.
Bacalao & Bananas
My appetite has been coming back to me these days and it's been wonderful. I've almost been eating "too much" but I know that's just the steroid talking. I dove into an old family recipe today and made some ensalada de bacalao which is salted cod fish salad. I included tomatoes, onions, avocado, potatoes, guineos, yuca, and yautia, seasoned with oil, vinegar, salt and pepper. What a delicious treat! I had it for lunch and for dinner on a slice of toast. And for breakfast, I had peanut butter, cinnamon honey banana toast, but to help with the dry mouth, I mixed the peanut butter with plain yogurt before spreading it. Yum!
Pirate’s Crew
The sun finally came out after days of rain! My friend and I were able to get in a long walk, and by the end of today I had 14,000 steps! That’s just incredible considering a month ago I was wiped out from radiation and couldn’t leave the sofa! For better or for worse, the prednisone is making me very hungry these days. And getting in the walking and activity is helping me balance out that equation. I’m still taking the stomach motility meds to help process my food, but it’s slowly getting better. I haven’t really tried to eat without them because I’m afraid my food will get stuck in my stomach again. Speaking of getting stuck, I’ve had some trouble swallowing dry foods like bread, but drinking liquids helps to get it down. I’m sure it’s nothing to worry about and it’s probably just dry mouth, but with myasthenia, I run the risk of weakened swallowing muscles and that makes me afraid I could choke.
But I know this pirate’s crew would be the first to rescue me! I love this crew, they’re the best!
Not Puzzled
I have been living in isolation for months now. Ever since my lumpectomy, then Covid, then gastroparesis, then myasthenia gravis (!), I only go to the grocery store or other shops, and my outings have been sporadic at best. Ever since the double vision started six weeks ago, I haven’t driven my car. I feel stuck and helpless more often than not, and sad to be so dependent on others. But the one thing that doesn’t puzzle me is how company makes me feel happy. I am social by nature and being alone can be taxing. Not to say that I don’t enjoy my peace and quiet, of course I do, and it’s necessary for healing, but so is socializing and connecting with others.
So thank you for spending time with me Søes, I’m honored that you have come to see me, I feel incredibly special and blessed by your presence. I won’t forget this time together just doing ordinary stuff. My heart is full.
3,000 Miles
Despite the rain and gloom outside, I had such a lovely day with a friend who traveled over 3,000 miles to see me! It was remarkable to see her in person after so many years of connecting long distance. We had great food and great conversation, which put my heart and mind in a happy place.
I also made the appointment for my surgery, the thymectomy. It is scheduled for the beginning of June. Now I just need to accept this new plan going forward.
Finally, it’s time to root for Princeton - the Tiger is ready to play! Go Princeton!
No Quick Fix
I have a lot on my mind with my diagnosis and next steps. There are a lot of unknowns and I just don’t know how long this will last. This weekend will be six weeks since my double vision has started. I haven’t been able to drive my own car for a month and a half. I feel trapped and frustrated and there’s no quick fix. I spoke with the neuro-ophthalmologist this evening and he is going to taper the prednisone up and then down. He said I may not see results, still, for several weeks. It’s discouraging. So discouraging. He was optimistic because he says this is manageable. I’ll believe it when I “see” it!
For these down moments, a nap on the sofa is called for to re-energize the body and mind for good thoughts.
And also because when I’m surrounded by sick people (my sick family!) I have to stay healthy! Lord knows I don’t need one more thing!
Press Forward
Another trip to Penn in Philly today for more information. Today I met with a thoracic surgeon and pulmonary oncologist. The purpose was to discuss the thymoma and the consensus appeared to be - remove it. One of the major reasons, of course, is that thymomas are slow growing tumors. Whether malignant or benign, there is no denying it will grow back/continue to grow, at whatever pace, and I could later run the risk of it growing too large or spreading in that area. And then of course there is the myasthenia gravis. While the surgery does not offer me a 100% chance of a cure, it can offer some hope of either a cure (30%) or a lessening of symptoms and less need for lifelong medications ((30%). I know those odds don't look fantastic, I wouldn't make a basketball bracket out of those odds (!) but they are still a chance to get better. The encouraging news was the surgical approach, as the thoracic surgeon described a robot-assisted, less invasive surgery. It's still very complex (I made the mistake of looking it up!) and would require me to stay in the hospital for two days, but it's far more amenable than the sternotomy (cutting my chest open!).
It's a lot to take in, but I have to press forward somehow. These are huge decisions I was hoping to avoid but I've been pressed against a wall and need to move from where I am to a better place. I have one more important appointment in three weeks with a neurologist at Penn who specializes in MG. More to come.
After back to back appointments, we finally got to eat our packed lunch! Yum!
Poco a Poco
Today was my one month follow up appointment post-radiation. It’s incredible considering all I’ve been through so far that radiation turned out to be one of the easiest things I had to do. I’m not saying it was a field trip, but I feel relatively unscathed in comparison to everything else. My skin fared quite well, no burns, just some tanning and thinning of the skin. I religiously applied lotion twice a day (thank you friend for the Cerave) and was very gentle with the area. The doctor said it looked great and the skin may peel a little. I still have some tenderness in my chest wall, like I’ve been punched a lot or did 1000 push-ups. But with continued massage and stretching, I’m praying for good outcomes.
That’s all I’ve been praying for these days, good outcomes. I have more research and learning to do, so much more to understand about my condition, but as you say Lu - “Poco a poco” little by little, I’ll get there.
Sunny Disposition
Today I sat by the window to try and give myself a sunny disposition. I woke up in the middle of the morning to use the bathroom, I thought those days were behind me but this seems to be the cross I have to bear for a while. I had trouble falling back to sleep and cried in my pillow at 4:30 am because I just wished my eyes would work again. So I’m back to down in the dumps. I know I have so much to be grateful for, but waiting for answers and being immobile strips me of dignity, patience, and just an overall sense of well-being.
So bring on the sun, I need to kick these down days out of here.
Perspective
I had a sweet dose of perspective from the sweetest...thank you my friend for reminding me how my circumstances have improved. It's hard when you're sitting in the middle of the muck to see things clearly, but you're absolutely right, I did walk faster today, I did go further today. That yogurt drink that was once a meal was now a snack. Sure, I only have one eye right now, but I have gained a lot more than just a month ago when I was wiped and couldn't get off the sofa or eat any solid food. I still have a long way to go, but thank you for putting it into perspective for me. I have gained a lot. I love you!
Life’s a Beach
After my appointment with the gastroenterologist, I got to enjoy a day outdoors with the hubby of the year. This amazing man has been by my side and supported me so deeply, it's like he can read my heart. We are one bonded pair, and my love for him just grows and grows. I'm blown away by how freely he has loved me and taken care of me throughout this experience. Speaking of experience, we went to the beach today, smelled the fresh sea air, and felt the ocean winds in our faces. It was magical. And I got in 10,000 steps today, way more than I have in many months!
Workout
I'm still trying to "work it out" to get better - taking the prednisone, eating three meals a day, trying to keep hydrated and rested as much as possible. Tonight I decided to actually try a workout. I haven't done any official exercise since probably back in October or November...this was the longest spell of not pushing my body and getting my heart rate up. So I got on the stationary bike and went for ten minutes! Wow, I was wiped. I kept a simple pace with some decent tension. After a break, I was feeling ready to try again and told myself just five more minutes. I did ten! That's a heck of a run for no exercise in months and extreme weight loss. But I'm so glad I tried it because it makes me feel like I might be able to do anything... which gives me hope.
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!
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