Echo

Today was my 3 month echocardiogram. It’s important to check on my heart because of the medicines I am taking. 

It’s a challenge for me to leave the house because walking is still hard for me. I’m still very weak in my core and moving around wipes me out. But today I managed to walk over 2,000 steps! That is more than double from the beginning of the week. Looking at my step counter for the past two weeks, I’ve been getting better and better each day. That’s very encouraging for me. 

Some Days

Some days are better than others. Yesterday was a better day. Even though I heaved first thing in the morning, I had three solid meals and felt good. Today, no heaving. But my stomach felt uneasy most of the day. I couldn’t get comfortable in any position, I felt kind of queasy and unsettled. That’s just how it is I guess. So on days like today, I just take a chill and do nothing. 

Tomorrow I have an appointment so I will have to leave the house. Wish me luck. 

This time last year I had an MRI that showed a mass near the center of my chest. My oncologist was worried that the breast cancer had metastasized and it was Stage 4 cancer. We lived in such fear for days…little did we know that it was a thymoma, this other unrelated mass. So much has changed in a year, so much knowledge gained, so much time lost on illness. And now I’m scheduled at the end of July to have the remnants of that very mass removed. How time flies…

Hair Today

I’ve been sort of marveling at my hair today. It’s been growing in thick and wild. I’ve never had hair this short before in my life so this stage is still very foreign to me. I had no idea what the texture would be or how gray it would be. It’s been an interesting journey so far, but of course I’m still looking forward to getting my longer hair back. I know it’ll take a long time, but little by little, just like my recovery, I am slowly getting there. 

Today was a good eating day as well. I had peanut butter and honey toast for breakfast, potatoes and bacalao for lunch, and a slice of pizza for dinner! Go me! I did have some heaving this morning before breakfast, just some bubbles again, but I made it through the day without issue. Here’s to hoping for more good days ahead!

Strength for Today

I had another terrible night of sleep. I was awake for almost four hours of the early morning and finally fell back asleep at sunrise. My insides are uncomfortable and I did some heaving again this afternoon. Thankfully I was able to see my gastroenterologist today and he confirmed that getting a virus on top of my gastroparesis would most certainly cause havoc in my system. He does not suspect any actual blockages internally but still suspects I am suffering from poor digestive motility. So we will press on with the regiment I’m on and add a new antiemetic pill as needed. If I can stave away the nausea and add more food to my system, I can be on the road to healing. 

This is my hope right now. I need strength to get through each day, to fight for more food in my system, to stop vomiting, to get better rest, to heal and get stronger each day. I’m so very tired, my mind and body are so tired today, because the fight feels too much sometimes. 

Thank you my friend for these beautiful gifts, for the lovely reminder that I’m not alone and I have people who are thinking of me and wishing and praying great things for me. I pray that all of our prayers are heard and answered! Amen!!

Soup and Studies

Today was dedicated to soup and studies. 

I'm so very grateful to Jenn for the soup - thank you for filling my belly with such homemade deliciousness. Your loving care grounds me and reminds me how special I am. 

And I can't forget my studies, no matter how junky I am feeling, I have to keep my eye on the prize. So I submitted my assignments and studied for my quiz. 

I still don't have strength to move around like I want to... little by little. That's all I can hope for these days.

Reminiscing

I had a wonderful dinner last night and was so delighted to snack on some yummy foods again. But then I woke up at 3:30 am feeling unwell and proceeded to vomit up my dinner. So here I am bound to my chair again resting my body and recovering from eating. 

My son said to me this morning he was looking at pictures of us from a time when I could beat him in a race, or when we were traveling together. He said they were good memories. My face dropped. I said we will have those memories again soon (in my mind, I thought, I hope we will). 

So hubby and the kids headed out for the day and I’m here just reminiscing of times we spent together as a family, of our day trips to here and there, making memories, laughing, complaining, eating, running, and playing together. I miss those times and I’m angry and sad that I don’t get to have them right now, that my life is being stunted by this stupid illness and it’s robbing me of making more of these precious memories. I want it all back. 

June 2022 - Round Valley Reservoir

Not Asking for Much

Today was my first day out of the house since I came home from the hospital last Tuesday. I went for my infusion and if it wasn’t for Ed, I couldn’t have made it. My heart rate shot up, my stomach seized up, I could barely take 10 steps without falling over! I started to cry when I made it back to the infusion room for my bloodwork; Ed had to get me a wheelchair to bring me back! 

I ended up taking a nap during my infusion because it was exhausting. I couldn’t wait to get back home to my chair.

 

I just don’t understand what’s happening to me. The pain in my stomach feels like a cramp, like a hernia or something. When I walk, it seizes up and tightens into a ball. This morning I was heaving again, for the third morning in a row. Not vomiting anything really, just bubbles coming up. And my stomach cramping up. 

I’m tired. Just very tired of being sick. I just want to feel normal again. I want to sleep in my bed. I want to go for a walk. I want to play with my kids. I want to cook in my kitchen. I’m not asking for much….

Still Muddy

Every day I keep hoping for the best. Some days are better than others. Today was not it. I woke up in the middle of the night for some reason. The interrupted sleep led to a cranky morning. But to make matters worse, I started heaving again this morning, just like yesterday. I don’t know why, but the bubbles in my belly insist on fighting their way out in the morning. And it kills me because it gives me a sour stomach for the rest of the day. I hate this feeling. 

Muddy

If yesterday was a peaceful day, today was a muddy day. I have been struggling to use the bathroom for many days and it has left me feeling stuffed up and grubby. My mood is sullen and my mind is cloudy. I’ve tried lots of things but nothing so far has put me at ease. I’ll have to keep working at this or it won’t get better for me.

Peaceful

Despite how I feel and despite all the things I can’t yet do, today I was feeling peaceful. I spent the day getting ahead on my school work and moving around my house. I made myself lunch (soup) and listened to a podcast. I wasn’t really burdened by my illness or depressed. I was just existing and it was nice. I can appreciate days like this. 

Unattended

When we spend time focusing on one thing, inevitably something else gets neglected. Well, all of my energies have been poured into my health these days. And for good reason. But our poor garden has been left unattended and it is starting to show. All those seeds that I planted on a wing and a prayer in the hopes that a beautiful bounty would grow has become a garden of weeds! If I could only stand long enough to care for it, I would tend to it inch by inch. But my frail body would scream out for help before the first reach. What to do…what to do….

Perspective

Ironically I wore this shirt today that says “Love Where You Are”  but frankly I don’t want to love where I am. I want to be somewhere else, somewhere healthier, somewhere stronger. But as I’m reminded, I’m much farther along than I was a week ago, strapped up to IV fluids, vomiting profusely in the hospital. So there’s that. I guess I’m ok with where I am. Perspective. 

One Day

Did I sleep on the right side? You bet I did. For a whole seven hours! I didn’t move an inch! But I didn’t vomit either so that’s a win. I tried to push myself today. I made breakfast for the family (that was hard) and I ate half a waffle (also not so easy) and I sat outside (pretty peaceful). 

Then the family decided to go out for the day. Unfortunately I can’t join them in this condition, so I stayed home and watched movies all day. It wasn’t terrible, just quiet. 

These will be my days for a while, struggling to eat and move and get better, faced against all the things everyone else can do that I can’t. It is what it is. I’m used to being down now. I’m looking forward to being up one day. 

The Right Side

I was so excited when I was able to roll my recliner back to a laying down position and fall asleep. When I woke up in the middle of the night in the same position, I thought, maybe I should roll over. I tend to sleep like a mummy and not move much. But when I rolled over on to my left side, my stomach started to ache. I started burping and belching. Why didn’t this happen in the other side? Ok, relax. Just fall asleep. Nope. Not happening. I wrestled with my mind and stomach for endless minutes, when finally I couldn’t take it anymore…I started to roll back, but it was too late. The heaving began and before I knew it, I was throwing up in my mouth. I grabbed a vomit bag beside me and for another minute spewed into the bag. And then it was all over. 

Note to self: don’t sleep on your left side. (This will not bode well post surgery because I will need to.) 

Sleeping on your left side is actually beneficial for your digestion. Mine just happens to be a wreck right now. Hence why I’m still on the mend. 

Needless to say, I spent most of the day in my chair, resting, upright. I finally made it upstairs again to do some school work, but that was exhausting. Now I’m back in the chair, ready to sleep - on my right side only!

On the Mend

I spent the WHOLE day in my chair. Yes. I didn’t even open the curtains. I just sat there. I had cream of wheat for breakfast and soup for lunch. I took a nap even. I just didn’t move. I want so badly to speed up this recovery process. Finally this evening I made it outside to get some fresh air. I haven’t been outdoors in weeks, except for the walk to the car to the hospital. I am incredibly weak, my heart rate jumps sky high if I even take 10 steps. It’s horrific. But I have to get better. My surgery is rescheduled for the end of July. The last time I was this weak in January from gastroparesis, it took me months to heal and grow in strength. I’m still at the very beginning of this long, long road, but I have to see it through. I have to get better. 

My aunt came by to see me today and we were talking about life choices. We both agreed that we’re the type of people who like to think things through to avoid making wrong choices. But then I told her, hey look, I tried to make all the best choices in life I could, and look what happened! Sometimes you think you’re making all the best decisions, and well, frankly, things just happen to you. I wouldn’t have dared ask for any of this, not at all. Such is life. 

Recovery

I took a well-needed shower last night, but it took all my effort. Thankfully my mother acquired a shower chair for me, and that helped me immensely. 

I slept okay in my chair, just a little tummy trouble in the middle of the night, but for the most part I slept. I had a little bit of heaving this morning but I was able to breathe through it. I spent most of the day in my chair, resting and recuperating, on a liquid diet of broth, baby food pouches, and electrolyte drinks. 

In the afternoon I ventured upstairs to do my school work. I sat at my desk for hours and took two quizzes. I finally made it back to my chair in the evening, but the tension in my stomach was so high I started heaving again. 

A friend said to me today, 

I am not going to ask you to be strong that’s just enough ! You just take your time regaining your strength the rest of us will lift you up in prayer. But I will say this - you are amazing I am so fortunate to know you and have you as my friend.

Thank you my friend. I needed to hear that. I’m tired of being strong, I’m tired of this chaos. I just want to feel normal again. I will take the time I need to heal, and I appreciate your prayers to help me along the way! 

One Year!

I finally made it home today!! After five days in the hospital, I finally returned to my creature comforts, my kitties, my family! Don’t get me wrong, I can barely take 10 steps without getting winded and falling over, but I’m home nonetheless. This is going to be a LONG journey out of this hole, I don’t even want to imagine how long it will take. I was reading my blog posts from December and January and seeing the baby baby steps I had to take just to get well back then. I’m back in that space again, fighting for my health and my life. It’s SO scary, I thought it was all behind me. I was very wrong. 

Speaking of behind me, today is one year since I found out I had breast cancer! I’m reposting from that date as a refresher. How life has shifted and changed since then. If I could have foreseen all that were to happen to me in this one year, I wouldn’t have been so devastated about breast cancer. I’d be weeping over gastroparesis and myasthenia gravis. These have been far more devastating to me, unfortunately. But I press on, because I need to live. And I garner your prayers because I so desperately need them; I thank you! 

It was on June 13th, as I sat down at work to eat my lunch that I checked my email and realized the results came in.  I opened the report and couldn't understand it.  All I saw was "invasive ductal carcinoma"...what?  I googled it.  Breast cancer.  Very common.  High survival rate.  What??  I tried to call Matt but he didn't answer.  I ran into my boss's office and burst into tears.  It made no sense.  The whole thing didn't make any sense at all.  I was having an out of body experience.

I finally spoke with Matt.  I will never forget the shock on his face.  It still made no sense.  Then I spoke to my parents.  My mother cried and cried.  No sense at all.  

I stayed at work because it was our class party and what better way to distract yourself than to hang out with children. We were writing on each other's shirts and one girl did this  

She had no idea that she was tracing her hand, in pink, over that same spot.  I was touched. 

Hospital Stay #4

At 10:30 pm, they decided to move me to another room on another floor. I could have been flustered, but like much of what life has brought me these days, I just decided to roll with it. The new crew was very accommodating and kind, and I settled in quickly. I slept pretty well in my upright seated position, with no nausea or pain. This morning I had just one moment of heaving but that was after taking my medicine on an empty stomach so to be expected. I kept my breakfast down without a hitch (chicken broth) and calmly waited for the doctor to discharge me. However, mid morning I had a visit from both the hospitalist and the GI doctor. They both agreed that I should stay one more night, especially for observation. I have made good gains but I am still too weak. So I had broth for lunch and attempted to eat a more solid meal for dinner. That was too much of a challenge for my stomach and I’m currently regretting my attempt.  God willing I can sleep well tonight and have strength in the morning to finally go back home! 

Hospital Stay #3

I never thought in a million years I would be here. I mean, I knew I would be in the hospital after my surgery, but I never thought I would be hospitalized like this, ever. The doctor is not ready to release me because I continue to vomit. I am staying one more night. 

I thought that my diagnosis with breast cancer was going to shake up my whole world. I had no idea what was ahead of me. I tell Matt that it’s like I got pushed down a flight of stairs, except that when I get to the bottom, it’s not a landing but another set of stairs. I imagine myself falling down the stairs in M.C. Escher’s “Relativity” where there is no gravity and I will just keep falling up and down and all around. 

I really need it to stop though. I don’t want to be one of God’s chosen ones, I don’t want to be special and handpicked for this occasion anymore. I want to be left in peace and health, back with my family, living a normal life again, before all of this hellfire came down to rain on me. 

Hospital Stay #2

Most people don’t like staying in the hospital because it’s not a very restful sleep, but all things considered, I slept pretty well despite the wake up calls for vitals. No stomach pains or vomiting through the night which is a blessing. I woke up at the crack of dawn and sat peacefully watching the sun rise. I was grateful to have scratched at the surface of peace, for that one moment, to have put everything out of my mind, no worries, no thoughts of this or that. It was a momentary bliss. 

About an hour later the nurse came in and gave me my morning meds, but I still wasn’t cleared to eat anything, so unfortunately I started to heave from the stomach/hunger pains. After two hours I was finally cleared a full liquid breakfast. When my cream of wheat arrived, I overindulged to my demise. I was so full, it took a long time to relax my stomach again. 

The doctors have determined that I may be suffering from gastroparesis. I explained that I’ve suffered from gastroparesis since December and never had any issues like this, however, if I did somehow contract some kind of gastro virus, then that coupled with gastroparesis can create a much more complicated situation involving vomiting, etc. So ultimately it was the safest thing for me to stay in the hospital and be hydrated and monitored. I’m here for one more night and will return home tomorrow. 

I have declined so much, I feel like I am back to January all over again. I have lost 5-6 lbs this week, and have very little strength and energy. But I am so grateful for this time to heal and rest. I saw how far I was able to go from January, so I need to double down on my recuperation before the surgery date returns. Thank you for your prayers! I still desperately need them!!

Hospital Stay

I had an incredible night’s sleep. I slept immobile in a seated position but it worked and  I slept. But I was still heaving in the morning. I was glad that I postponed my surgery, there’s no way I could’ve gone forward with it in this state. It’s now rescheduled for the end of the month. 

I called my oncologist to see if I could get a hydration in his office today, but he read my ER report and wanted me to go back to the ER instead and get more tests done. So I returned to the ER this morning, and I vomited, and heaved, and sweated and cried. I had more tests done and more bloodwork drawn. Finally they decided to admit me, to observe me overnight and get to the root cause of this illness, to get me well again. 

So instead of recovering from surgery in Philadelphia, I’m recovering from an unknown virus in Princeton. 

Please pray for me, to return me to my family, healthier and stronger. 

Side note: My first hospital stay since childbirth 2012.

 

Day 6 - The Postponement

I had a limited amount of energy last night, I thought I was turning a corner. After I showered, I took the anti-nausea pill just in case. Except that when I returned to my chair, I felt dizzy again and my stomach grumbled. I could not lean on either side before I started vomiting again. So I had to position myself sitting fully upright to sleep! I was so angry! 

I woke up this morning in a groggy, half-asleep, half-awake state. What an awful way to try and recover. I feel like I’m in some sort of military sleep deprivation experiment. I was still waiting to hear from the surgeon’s office and by mid-morning they called me. Their advice was think about it and decide this afternoon. 

After I got off the phone, I had pretty much decided I would just go ahead with the surgery, to get it over with. However, I attempted to take a short nap, and when I woke up, the room was spinning and my stomach turned over. I started heaving again. That’s when another nurse called me and I was in my worst state, sweating, heavy breathing, holding back the vomit… she said, the bottom line is, this surgery is elective, I can do it when I want. And if I already don’t feel well, it certainly won’t aid in my recovery to be so sick before having surgery. I do need to have the surgery, to have the thymoma removed. It will eventually grow back and continue to grow. But for now, I will postpone it for a month, to live out this virus that is attacking me, and get stronger for the next time. 

Please continue to pray for me. Not only am I angry and frustrated about being sick, and that it’s interfered with my already troubled health and surgery, but it’s also gotten in the way of my time with family and friends, and it’s taken me away from my life duties, like home and school. I can’t stop crying …how much am I going to keep losing?! 

Day 5

The sickness ensues. I slept ok all things considering. I woke up at 1:45 am and hobbled across the house to the bathroom. I woke up again just before 6 am and dizzied myself again to the bathroom. This time I was very unsteady on my feet. I made it back to my chair just as I began belching again. I held it back as well as I could. I distracted myself on my phone. Matt came to check on me just as I was about to lose it. The room was spinning like one of those playground tops on full spin! I was out of control, vomiting, spinning, heaving, crying! Why!!?!?!?

Matt helped me so graciously (I love this man!). He got me fresh clothes, put fresh bedding on my chair, and brought me a potty. He got me the anti-nausea pill and rubbed my hair. 

For now I am relegated to this chair. I cannot move or else I run the risk of spin and nausea and vomiting. I have a call out to the surgeon. I don’t know what this means. I’m falling apart…

Trip to the ER

What started out as this...

turned to this. 

I spent the night in bed tossing and turning, but made my way down to the chair in the morning. I heaved and vomited some more, and the pain just wouldn’t subside. I decided to go to the ER. I got a ton of fluids for dehydration and several tests done to rule out infection or failing organs. The end result was anticlimactic, but the fluids and anti-nausea meds helped to stabilize me. I feel much stronger than this morning, although still weak from not eating. I’m back home taking baby steps consuming foods and taking it easy. Now I'm praying for a peaceful night's rest and an even better day tomorrow.

Thank you so much for your prayers. 

 

Need Strength

3 am. I lay on the bathroom floor half naked on a pile of towels like a feral dog. Trying to sleep. Trying to vomit. After 45 mins I give up and crawl back to bed, exhausted. I sleep for 4 hours. I finally awake to the feeling…shuffle down the hall, fill the bag, brush teeth. 

Sweating, crying, urging. I need this to be over already. I don’t know what day it is, what time it is. Everything just swirls around me. 

I finally make it to the sofa. No food in my belly, just liquids. My mom boils a potato. Thank you mom! It doesn’t hurt to eat. I feel settled and watch tv. I get sweaty, it’s coming. I hobble to the bathroom. Nothing. 

I decide to shower off the sweat and tears. So painful. Everything hurts. I crawl back into bed, start falling into a nap but I’m awakened by the hurl. Hustle back to the bathroom, into the bag. Something but not everything. Utter exhaustion. The battle continues. I need this to be over. I need strength. Please pray for me. 

Sweet Release

Today was not a “food shopping” day. It was not a “proper brunch with my girls” kinda day. It was not an “enjoy the nice weather with the family” kinda day either. Instead it was a “hug the porcelain throne” kinda day! That sour stomach finally reared its ugly head and had me running to the bathroom several times for a sweet release! 

The rest of the day I lay placid in bed, binge watching useless tv. 

Not what I was hoping for…now I’m just praying for the strength to get through this week, to get my house in order, get ahead on my school work, and feel prepared for my surgery this Friday. 

Thank you my girls for your enduring love, I’m so grateful for you!!

Trapped

The past few days have been an utter decline for me. I’ve had bouts of crying each day because I’m terrified of what’s to come. Each night I fall asleep begging for peace, and each morning I wake unready for the struggles that await me. 

Then starting yesterday I developed a sour stomach, a nausea and queasiness I haven’t felt since chemo. The blistering hot weather made me feel like I was cooking from the inside out. I would break out in a clammy sweat and start shivering. Today I took my fever, perfectly normal, yet still I would break out in a clammy sweat, down to soaking my undergarments. 

I sat around the whole day, looking for a distraction from my malaise. I found myself trapped, twice. It was a comfort from Miss Pepper. 

The reality is that I wasn’t trapped by her. I have felt trapped in this body for a while. I’m trapped in this sickness and I just want to scream!! Everything scares me, I’m so frightened! My body keeps shifting and changing and rebelling and my very normal mind keeps screaming into the void - STOP! Stop already! 

I’m terrified of what will be left of me by Friday. I’m scared that I will be a shell of myself when I undergo surgery. I’m barely surviving the days and nights, what will become of me when, God-willing, I wake up on the other side of the surgery?! I’m not a superhero! I don’t have superhuman strength to withstand anything. I’m so broken right now, I’m so battered and flailing in the wind. 

Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go (Joshua 1:9).

Infusion Friday

We return to our regularly scheduled programming, breast cancer infusion Fridays. Despite the onslaught of myasthenia gravis symptoms, I came back to the blog originally to document my breast cancer journey, and even though it practically feels like a thing of the past, I’m still in active treatments until probably the end of August, then I will be taking a medicine (inactive treatment) for at least 10 years! So my breast cancer journey is far from being over. I just managed to pick up a stowaway along for the ride! I asked my oncologist today if he’s had other breast cancer patients pick up a secondary diagnosis, and he said recently he had three breast cancer patients who had unrelated lung cancer as well. So they need double surgeries, treatments, etc. No thank you, that sucks. I’ll stick with my wonky MG, I guess. I have no choice anyway. 

Yay!

I spent the morning lingering in bed. I keep chasing after that ever elusive quality night’s sleep, in the hopes that I’ll wake up brand new again. It doesn’t happen. Instead I wake up just a little bit more bitter than the morning before. But still grateful that I get to give this thing called like another try, no matter how taxing it can be.

I went out for a walk and lunch with my mom. I really had to push myself to take those steps. What used to be my favorite activity has now become a challenge for me. When I returned home, I took a decent nap on the sofa with the cats. 

This evening I finally made it my son’s orchestra concert. Last spring I couldn’t go because I was working. In the fall I couldn’t go because of my surgery. With all the strength I could muster, even though I was sweating bullets, worried about peeing myself, concerned I could get sick being around so many people, nonetheless, I made it. Something as simple as a family outing for just an hour has become a challenge for me. So many things cross my mind, daring me to engage in any activity at all outside of the house. That was never me before. I was always the first one at the door daring everyone to follow me. Now I feel like a letdown. 

But I swallow that guilt because today I spent time with my family, and I took a walk outside. These are the things, at the bare minimum, I can hope to accomplish, and I did. Yay for life!