Ahhh fatigue! It’s the little dirty secret of stem cell transplant. It’s an ongoing battle that seems to pop up at any time. It’s the main reason I can’t live in the two-story house that I put so much work into to live out my life as a single woman. It makes everyday life more difficult.
Image by Alexandr Ivanov
I don’t suffer fatigue on an everyday basis. It seems to pop up at random on various days. One day I might feel like a million bucks and then the next day I feel like I’m a buck fifty. It’s an ongoing struggle that I have to deal with the possible day-to-day at this stage in recovery. Oh, I’m just a little over 300 days from transplant.
Difference between tired and fatigue
To me, tired is more of a sleepy issue. I’ve had a long day and just want to take a cat nap in my recliner for an hour to refresh and gain some energy.
Fatigue is a whole-body issue. My muscles just don’t have what it takes to move. They feel exhausted and I’m not sure about my feet. I worry I might not make it to the bathroom without falling or collapsing. They’re not getting the oxygen they need to keep me on my feet. It makes getting up out of a chair hard at times. Even rolling over in bed can be a challenge in the middle of the night. The muscles are just not there.
What causes the fatigue?
For the most part, my hemoglobin reflects how I feel. The lower the level the worse my fatigue is. As of three days ago, my level was 8.3 which is point three from needing a blood transfusion. I hate being that low. My legs are unsteady and make it difficult to stand or walk even a short distance like going to the restroom. Until my hemoglobin rebounds, I will feel this way.
When my hemoglobin is higher like high nines and tens I feel great. My legs are strong and I can walk or stand with less effort.
Medications can cause fatigue or even drop my hemoglobin. Just a little over a month ago I felt the best I have had in over a year. Out of the blue, I started having issues with GVHD. My doctor upped my Prednison which in long-term use wastes the already depleted muscles. It affects the large muscles of the legs and hips making even getting off the toilet a challenge at times.
Steriods like Prednison lessen one’s immunity which makes it hard for the body to fight off viruses and infections. Which is another cause of fatigue. Any virus can cause you to not feel the greatest and also lower the hemoglobin level. It’s a vicious cycle. It’s like I’m screwed either way.
How to cope with fatigue or lessen the impact?
- Limiting my activity seems to help a lot. Say, for instance, laundry. I currently have to take my clothes to the laundry mat which involves loading and unloading the laundrry. If today is laundry day I limit it to just that task like no extensive cleaning or shopping. Keep it simple.
- When do I feel my best? It seems the mornings are best at the moment. I do my daily tasks at that time leaving the rest of the day to relax or do small things when I can or need to.
- Take lots of breaks. When my numbers are low even sweeping, vacuuming, mopping, and cleaning the kitchen and bathroom becomes tiresome. When my numbers are low and I’m not feeling well I will sweep and mom then takes a break. Then move on to the next task and take another break. It takes longer to complete the tasks but at least I can manage the fatigue and not overdo it.
- Use equipment as needed. I have a roller which is a fancy walker. It gives me a place to sit no matter where I am. This helps to get me off my feet and rest in between longer distances when seating isn’t always available. When I have my roller with me I always have a place to sit a minute and rest. Canes and wheelchairs can also be very helpful on good days or bad.
- Don’t overdo it. It’s ok to take a day of rest you don’t have to be a rockstar every day. Know your body limits and what you can handle when your numbers are low. You’re not doing yourself any favors by depleting your muscles.
Coping with day-to-day fatigue can be very frustrating. These are the main ways I keep going and manage the effects of day-to-day activities depending on where my levels are at the moment.
How do you cope? If you have any other suggestions I would love to hear them.
Do you ever wonder why me? Or how things just happen and you’re feeling why now? Why not last year or next year. That is pretty much how I felt over the last couple of years.
In 2019 I went through a divorce after fourteen years of marriage. Not only that but my three girls were finally graduating from school, getting married, and having babies. This left me with newfound freedom. It was like being in my twenties again. I was free!
Don’t get me wrong, I love my girls but it was time for mom to have time to herself. It’s been a long time.
Not only did I have time to do things for myself things on my blog picked up adding more income which allowed me to invest in other areas to bring in more revenue.
A friend of mine talked me into going to auctions and selling items on eBay. In no time my income was almost three times what it was.
I was busy all of the time but loved the nonstop lifestyle. I was so busy my girls would message me and tell my grandchildren want to see me. I actually would schedule a time frame promising when I would be home. That was something my kids were not used to. They were always used to mom being home all the time and always available when they needed something.
I even scheduled a vacation with friends for a week in Vegas. That was the first time in years I had a vacation let alone a vacation without my girls.
Then Covid hit. That turned everything upside down as you know. I was furloughed from my full-time job which left me more time for blog work and eBay selling which was fine by me until the auctions were shut down. I was then stuck at home most of the time all alone which was a huge step backward.
I became lonely and joined a group on Facebook for singles. Long story short, I connected with a man whom I have a lot in common with. We spent a few weeks talking and decided to meet. I know we were going through a pandemic and that’s not social distancing but hey I was lonely.
We hit it off right away and he asked me to be his girlfriend within a matter of a couple of weeks. Our relationship was so easy we just fit. It was nothing like I’ve ever had before.
I haven’t always had the best relationships or picked the best guys. It’s been my biggest downfall. I’ve been taken advantage of and abused in quite a bit of my relationships. But, this guy was different. He was amazing from the beginning and someone I’ve never had in my life before.
It was incredible how alike we were in our thinking, our wants, and our plans for our future. It was crazy and so easy to fall in love with him.
We booked a vacation to Vegas with my friends and had the best time. He fit right into my group of friends like it was meant to be.
Even though the world was going through a pandemic I was making money, enjoying life, and in love with an incredible man. Everything was just so wonderful. I was happier than I had been in my adult life, maybe my entire life. Everything seemed to just fall into place. I was truly completely happy!
Everything continued to fall into place till around March. I started not feeling well and wasn’t sure what was going on.
After a visit to the ER in my town, I was diagnosed with cancer. My world was completely turned upside down. I was about to lose everything I had worked so hard for leaving me asking myself why me? Why now? Everything was so wonderful and I was so happy.
Don’t I deserve to be happy?
I asked God that very thing. I was so angry with him for allowing this to happen. I questioned my faith and my feelings. Why now? Why allow me to be happy, enjoy my life, and make plans for a future with a wonderful man just to have it taken away.
It was mentally draining, depressing, and hard to comprehend.
For weeks I worried this man would run because it would be just too much for him to deal with. I felt so alone and my future was hanging by a thread. I had no idea if I would even live through this let alone beat cancer. Sleep became my friend not only for my body but for my mind.
He continued to stick by me through the treatments and even learned how to unhook me from my chemo bags during treatment which is miles out of his comfort range. Instead of running, he was very supportive and caring. He turned out to be one of my best cheerleaders. He brought and still brings happiness to my life when I really needed it.
I decided maybe God brought him to me to help me through this fight. Someone to not only comfort me but someone to keep me heading in the right direction. A reason to push forward. I know I have my family, but having a partner by your side is a big deal. He’s a big deal.
I decided not to question things. To hold on to my faith put my life in God’s hands.
We will see what the future holds.
A little over a year ago I was diagnosed with AML. At the time I had heard of people having Leukemia but I lacked the knowledge of what that meant. At that time I thought it was cancer that was treated as needed over time and something that was very treatable. I was concerned but not scared of what was to come when the ER doctor gave me her diagnosis. Maybe even in denial a bit.
After being sent to James Cancer Clinic in OSU in Columbus to receive their diagnosis and the game plan for treatment from the cancer team I was so confused. I was told I would spend the next four to six weeks in the hospital on chemotherapy. That wasn’t just hard to hear, it was something that didn’t make any sense to me whatsoever.
Everyone I have known who had cancer had time to prepare, call family, make arrangements with work, meet the team, have all kinds of tests or procedures, and literally allow the information to sink in.
I had three days and I wasn’t going anywhere.
When the doctors left the room with only my nurse present I told her I just don’t understand and I’m so confused. She told me well maybe I can help. What don’t you understand? I filled her in on the time to prepare for chemo that the others had and here I am starting chemo in three days. The urgency wasn’t sinking in. I literally wasn’t putting things together very well. I also wasn’t feeling well due to fevers and fatigue but still, I just was mentally struggling with what was happening to me. It was like going in one ear and out the other without really absorbing the information.
My nurse told me there isn’t time, time is not on my side. You need treatment now.
Those words shook my soul.
I grabbed my laptop and started researching AML and joined a few groups on Facebook. That is when I found out there is more than one type of Leukemia and the one I had was deadly. The odds were not good and I didn’t have much time as stated by my nurse.
I was blown away.
When my daughter was a year old she was diagnosed with Neurofibromatosis. I assure you I spent endless hours researching the internet to learn all I could about her diagnosis. I read every site I possibly could. I wanted to know everything I could to treat, diagnose, and help her live with her condition. I wanted to know what to expect to make the best decisions for her care. I couldn’t get enough.
At this time I hadn’t googled a thing, I hadn’t looked anything up to understand the severity of my diagnosis. That was so unlike me. I spent thousands of hours reading over and over about my daughter’s condition but spent nothing on mine.
Maybe it was denial or I just didn’t want to deal with anything mentally.
That all changed that day. I began looking into treatments and what my odds are to survive this horrible disease. How can I beat this? How do I keep going?
I find comfort in knowing and reading other people’s stories. I would rather know what my chances are than not know.
I decided to share my story not only with family and friends but with the world. I would love to write a book but for now, I will just share my story via this blog in hopes to help someone just like me. Someone who wants to know what I’ve dealt with and how I survived.
I want to connect with people just like me that want to share their stories, their struggles, and accomplishments with this disease. So they know they’re not alone. I’m here trying to survive this horrible cancer just like they are.
Thank you for sticking around while I ramble on.
I don’t even know where to begin.
I’ve lost friends to Covid over the last six months which has left me feeling guilty for surviving. I know that sounds crazy but it’s true and is something that sometimes keeps me up at night.
Image by Juraj Varga
One of my close friends for twenty-five years passed away due to pneumonia from Covid. She struggled with every breath in the end and didn’t want to be put on a vent. But, she gave in and that was the last time she was with us. She never woke up. She never came off the vent alive.
Not for a second during her long hospital stay did I doubt she wouldn’t come out of it. I felt she had this. She was going to go home any day acting like her normal self. Everything was going to go back to normal.
I was so wrong.
Like others with underlying medical conditions, she had MS. Pneumonia and MS are a deadly combination and I know that. Others have passed away because they weren’t able to breathe. But, still, I felt there was no way she wasn’t going to beat this.
The night she was on the vent I awoke during the night to go to the bathroom and saw my light flashing on my phone. I picked up my phone and to my horror, I seen a message saying she had passed away.
I was instantly blown away. How could this be? She can’t be gone. It’s not the way it’s supposed to be. She was supposed to come home not die in the hospital!
Over the next few months, I kept thinking she was out there driving. She was a truck driver who only came home on the weekends so I wasn’t able to see her much and because of Covid, she was very careful of exposure so we kept things limited to talking on the phone. There were days we would spend two hours just catching up.
I never realized how much I think about her. I think about her pretty much every single day.
Anytime I’m traveling and see a semi which is all the time traveling to the James for the appointments that are an hour away I wonder where she is. Will I pass her on her journey to her next drop-off? Is that her in the truck ahead of me?
I think about her when I see really cool fingernail polish on Facebook because that is something we shared. We both did our nails and loved the different designs. Now I have no one to share them with. I can’t share them with her to get her opinion on a cool design, or a new product that’s out, or show her something I thought she would like.
Her loving daughter shares photos of her grandchildren on Facebook when they are out exploring, on vacation, or just really cute daily photos.
It rips my heart out! She would have been included in the outing. She would’ve been at that birthday party watching her granddaughter open her presents. She’s missing! There’s this huge hole in the room that can’t be filled because she isn’t replaceable.
She doesn’t get to watch them grow up.
She doesn’t get to celebrate the holidays with them.
That’s where the guilt comes in.
I’ve battled leukemia and a transplant for almost a year now that has left me with compromised immunity. I’m on a ton of drugs that make my life difficult just walking across the parking lot and make it very easy for me to pick up anything I come in contact with.
I came down with Covid around the same time she did but I didn’t spend one night in the hospital. I was given the antibodies to help fight it off but the very next day they said they weren’t going to help with the variant that was going around. So they were useless according to the news.
Covid for me turned out to be nothing more than a bad cold and fever. I spent a few days popping Tylenol and watching tv sitting in my recliner. I’ve had allergies issues that were more problematic than Covid. Other than an occasional fever it was no big deal to me. I have been through so much worse to this point.
But not her.
She was in the hospital fighting to breathe.
It should’ve been me.
I’m the one with a severely compromised immunity. I should be the one in ICU fighting to breathe not her. It’s not fair. It doesn’t make sense to me. My doctor told me not to get Covid because it could easily kill me.
It brakes my heart to know she’s not here with us. It kills me to watch her grandkids and kids enjoy life without her.
I feel so guilty even though I know it’s not my fault or there’s literally nothing I can do about it. But at the same time, I just can’t wrap my head around her being gone.
To me, she still out there driving her semi with her sparkly purple fingernails.
I miss her!
It’s not fair that I get to watch my grandkids grow up but not her.
What a day or should I say this past week.
I swept, mopped, ran the sweeper, cleaned the bathroom, and did three loads of laundry. Then I even took the KIA to sweep it out, clean the windows, and wash it. This is after spending a few days over the last week moving things from storage (eBay stuff) in Ashland to Mount Vernon storage to make selling so much easier. That was an ordeal. This girl is tired.
Anytime I would bump my arms or legs it would leave a bruise or blood would run down my arm. My arms are covered in dark red bruises from the constant bumping and moving things around. They don’t hurt, they just look really bad.
I stopped at KFC for dinner because I wasn’t going to cook and pizza wasn’t what I wanted. Let’s just say when I walked across the parking lot my granddaughter Braelynn could’ve beat me in a foot race.
I even managed a shower so I can spend the rest of my evening relaxing in my recliner. I love being busy but my legs just can’t keep up. My legs felt like jello from the hips down due to the long use of steroids. Somedays walking is such a chore and I feel so uneasy on my feet. It gets really bad after working on projects or doing normal household chores.
Medically, my numbers have dropped a bit but that’s to be expected because of the Jackafi. I have to return Thursday to check platelets because they’re pretty low at the moment which explains all of the bruises and bleeding.
Dr decided Friday to start my vaccines which is a good thing. But she only gave me the covid vaccine which makes me mad. There are other vaccines I desperately need more of.
Why only push the one. If it wasn’t for being compliant in the event I would need another transplant and not wanting to hold it over my head I wouldn’t have said ok. If I also knew I was only going to get the covid vaccine I would’ve told her I would wait. Ugh, I was really hoping for the shingles vaccine. I’m more scared of shingles and chickenpox than covid. I’ve had covid and it wasn’t a big deal I’ve dealt with a lot worse.
I return Thursday for blood work only other than that I’m good for the week. I don’t return to the clinic for another 3 weeks. I’m so excited to finally have a little break from dr appts, bloodwork, and hospital visits.
It’s a wonderful feeling to watch my medicine slowly decrease but sometimes it makes things a little rough. About two months ago the doctor stopped the anti-rejection medication which was ok at first. Then Boom a few weeks later things started happening.
Image by Darko Djurin
I started having issues eating. I would start to eat something and after just a few bites my stomach would start to become so nauseous I couldn’t eat. Even my go-to favorite foods were becoming an issue.
Eating out for dinner was something that quickly became pointless because I wasn’t able to eat like normal.
There were many days I lived on Campbells Chicken Noodle Soup because it was something I could regularly eat without feeling nauseated. Can you imagine eating chicken noodle soup for breakfast? This became an issue lasting over three weeks.
The inside of my mouth developed sores and became so dry my tongue would stick to the top of my mouth while I slept. Brushing my teeth became very painful, especially my front teeth.
On top of the stomach issues, I also would have uncontrollable diarrhea which sent me running to the bathroom. It would quickly turn to water and my bottom would be so sore it would bleed.
Then I started to find pills floating in the toilet. My bowels were such a mess some of my medicine wasn’t able to absorb due to moving too fast through my system.
I had to make sure I kept my water intake up so I wouldn’t become dehydrated. There were many mornings I felt terrible just because I needed to drink water. I would spend the first 10 minutes of my morning drinking water just to lose it again in the toilet.
Fatigue became a major issue. There were days I spent on the couch just watching tv with no energy to do anything. Naps during the day would make sleeping during the night a challenge.
The skin on my face has been dry for months. I was given a steroid cream to apply each day which would stick to the dry skin making it turn very white against the blazing red skin. I look like I have a crazy weird sunburn on my cheeks, eyelids, lips, and temples. The area around the eyes and temples is very tender to the touch.
Every morning I awake with my eyes stuck together from a yellow puss-like substance similar to pink eye. If you’re familiar with pink eye puss you know it’s like cement. Even using a warm compress to help remove the dried yellow bits made my eyes sore. I’ve lost a few eyelashes in the process. The area around my eyes was swollen making it hard to open my eyes fully.
I was on an antibiotic for a week which didn’t help with my eye issues either. Nothing seemed to help. I was given a prescription for refresh drops which doesn’t help either. I have to visit an Ophthalmologist who is familiar with GVHD of the eyes in a couple of weeks. Hopefully, he can relieve the swelling and discharge before I lose all my eyelashes.
My transplant team decided to up my Prednisone to help with GVHD. It helped with the stomach and somewhat the colon but that was it. Due to the side effects, she wanted to start me on a new medicine called Jackafi which is crazy expensive but doesn’t have the nasty side effects Prednisone has.
After starting Jackafi some of my symptoms started to get a little better. I’m hoping things will continue to improve as the medicine builds up in my system.
GVHD can cause a lot of issues and I’m blessed to not have anything too serious just more of an inconvenience and troublesome. It always can be worse, much worse.
Do you or someone you love suffer from GVHD? Was it treatable? I would love to hear from you so drop me a comment.
OMG, what a day. I showered and walked with PT. She said I did really well. I told her my problem isn’t walking it’s getting up off the couch, chairs, or toilets when they are low. She suggested doing that more often to build up my legs.
Lunchtime I decided to get a voucher to use at the Cafe on my floor of the hospital. They make the best grilled cheese and tomato bisque. It is delish.
After lunch, the doc visited with some news. I tested positive for Adenoviruses in my bladder. It’s a virus and treatable. Yes, we finally getting somewhere. She went over instructions for treatment which sounded harmless enough. I told her to do whatever she won’t just get this over with. I regret this statement.
First up.. medicine prep. No biggie. Then they inserted a catheter into my bladder. They filled it with fluid and a medicine to treat the virus on contact. I only had to leave that medicine in for an hour. WOW OMG WOW Not only did I feel like my bladder was going to explode but I was having major bladder spasms to the point the liquid was oozing out where it was it was connected to me. This was happening every 5 min. It was like being in labor. ugh, She offered me morphine which I said yes to. I’m not one to take pain meds but crap!!! After 50 min my nurse asked me if I had enough. UMMM YES! She undid the pin and slowly the liquid drained from my bladder taking the pain with it.
The nurse cleaned me up and helped get me in my chair. ugh, I survived. My nurse for the night informed me he was going to irrigate my bladder. I asked for the details for that procedure which sounded simple enough. Again…I regret that statement. He brought in three very large bags of fluid and a kit to hook up to the catheter. One line to the catheter and one line out to the bag. Easy enough, right? WRONG! After about 5 seconds my bladder was in a spasm and the pain returned. ugh, I looked at him and said I can’t sleep like this. I CAN’T DO THIS! He then turned the flow off and asked the PCA to grab a syringe. There was a large blood clot preventing the liquid to drain into the bag. Finally! The pain went away and all is well…for now anyway. It could be a very long night. Let us hope not to keep me in your prayers. I’m exhausted
Day 72… what a day. I had a bad start. I keep having these excessive hot moments where I sweat terribly. I’m not talking a little perspiration I’m talking flooding to the point I have sweat running down my neck like a waterfall. It’s like I was on a treadmill running but I wasn’t. It’s terrible. I become very fatigued and out of breath. Sometimes I can’t catch my breath and I feel very overwhelmed with fear.
I feel like a caged animal. I can’t deal with the anxiety because my body doesn’t work like it should because of the medication I’m on. I’m not depressed, I just can’t manage what is happening to me. Normally, I would go for a brisk walk to get rid of the adrenaline going through my veins but when your body doesn’t work like it’s supposed to that makes it impossible.
I worry about getting to my appointments on time. Did I do everything I needed to do? Did I check my sugar and take my blood pressure readings? Will my blood pressure drop too low and cause me to pass out? Can I make it from point A to point B safely? Will this lightheaded or dizzy feeling pass?
This is the stuff that goes through my brain. It becomes so overwhelming I can’t take it at times.
Trying to get to my appt at 8 am is just difficult and not possible for me. I need the time to get everything done without stressing over everything.
The doctors feel it’s something else going on, hormonal maybe. Doctors all agree I need to keep things slow in the morning because that time is difficult for me. My transplant team moved all of my morning appts back a bit to give me time. That should help to give me more time to manage the things I need to get done before heading to the hospital.
After my anxiety episode passed, I felt better as if nothing happened. I was able to get my emotions in track and carry out the day without any issues.
As for the other appointments, nothing really new to add with cardiologists or kidney dr. The only change to medicine was dropping my steroids and Tacro a bit which hopefully help with the fatigue in my legs.
I was very relieved to be back at the hotel to relax. Three doctor’s appointments and physical therapy were just too much for me.
At the James, they give you a tablet to order your meals, your list of medications, and various other information. I was checking it out and there’s also a note area that documents the doctor’s and nurses’ assessments.
I was reading through and I found the diagnosis information they never gave me. Chances are it really wouldn’t have mattered much because I was so out of it and wanted to sleep more than anything.
At the time of diagnosis when I was feeling the worse, my AML was 86%. That’s pretty high. 86% of my blood was cancer. That explains why the rush of chemo and blood transfusions I received.
I know a few people who have battled cancer. Those people had time to meet their team, prepare arrangements for treatment, run many tests, and allow the diagnosis to sink in. Typically, they had at least a month to prepare.
I was given three days. Three days till they were starting chemo to treat cancer I had running in my veins. Three days for the diagnosis to set in, meet the team, and contact everyone to let them know I would be in the hospital for four to six weeks.
If I would’ve waited and not gone to get the help I would’ve died probably in a week or two.
That puts life in perspective. I was close to death and didn’t even know it. I thought I had a bad stomach virus or food poisoning, not once did I think I had cancer or I was dying.
If things aren’t right get help because you just don’t know. I’m very grateful to still be alive and in remission with the prayers, wonderful doctors, the drugs that keep working, and the donor that gave me a second chance at life!
Thursday I received platelets. Mine was 6,000 which is quite low. Then today I spiked my first fever. It was 100.4 to 101 which isn’t a big deal for normal people but it is for someone who doesn’t have an immune system. I spent the whole day sleeping and that’s what I’m going to do more. I’m tired and nauseated. I can’t wait for my body to start building.
I haven’t felt the greatest. I was ready to be discharged yesterday to go to the hotel but an hour and a half before I was going to leave fever hit. I’ve been battling fever, nausea, and fatigue. I’ve only been out of bed long enough to go to the restroom. It’s been tough but doable. They have run multiple tests but can’t find the source of the fever.
My bloodwork and cultures show no growth. Everything looks good leaving it pointing at the new cells setting up and running full speed ahead resulting in fevers. They decided to give me a steroid to calm my bonemarrow down a bit. This morning was tough with nausea, vomiting, and diarrhea. But after I showered and took a little nap everything turned around. I was able to eat dinner like a normal person not like a picky 2 year old who doesn’t want to eat her green beans.
Its test day, they tested my lungs, did the echo and bubble study on my heart. Then an ultrasound on my arms, legs, and chest. Echo and bubble study was good so my heart is ok. The ultrasound showed no blood clots.
We are still waiting on the results of the lung test hopefully we get that tomorrow. My oxygen level is still great, vitals are all still good. Still some blood in her urine, no results about that. So now we wait for more results tomorrow.
I’m slowly feeling better. I was actually able to do the prep for the colonoscopy last night. Fun fun! Which led to very little sleep last night. Plus they woke me at 6:30 AM for the test.
After the test, I napped till PT woke me to go for a walk. It was short because I was tired but I managed. I’m looking forward to bedtime and hopefully a good night’s rest.
I’m no longer hooked up to the iv so I shouldn’t be awake to pee every 2 hrs. That will be helpful.
One of my doctors mentioned starting to slowly wean me off of some of my meds which will help tremendously. I have an entire pharmacy at the hotel. It’s crazy how much medication I take. I’m so looking forward to moving on and someday going home. It seems like an eternity since I’ve been gone.
I was able to spend time with my family and go out to dinner. I’ve missed everyone terribly. It’s been almost 2 months since I left to start this journey and hopefully not too many more to go. I’m very tired tonight but trying to stay up a little longer than I have over the last couple of months. It’s a struggle the grandkids wore me out. It was well worth it tho.
(From my sister, Deanna) Andrea is back in the hospital again. I just had to call the squad, she passed out twice on me. She has not been feeling good the last 2 days and has had diarrhea. I believe she may have got too hot and dehydrated because she started feeling light-headed in the shower. She jumped out and she sat on the toilet and that’s when she started to shake like last time only this time she passed out on me twice. I’ll let ya know when I know more probably won’t know anything till tomorrow some time.
I’m still at the James but hoping to be released soon. My sodium level is down which they’ve decided to stop my kidney hormones to see if I no longer need them or maybe a smaller dose. My CT scan was fine except it showed possible low-grade colitis. No CDiff, that’s a relief. I’m feeling much better no nausea and diarrhea. It’s been a long couple of days without much sleep during the night. This girl is ready for bed.
It’s been quite the day. My day started off really well. I was feeling great and had an early shower. Then boom, I didn’t make it to the bathroom twice. Ugh, and I just showered. Noooo. It’s part of the struggle.
Things I’ve had to deal with at times but I will get past this. Someday. Hopefully soon. So yes I’m still in the hospital. I’m hoping to get out tomorrow but still not sure. My numbers are out of wack and my kidneys are showing a little distress. They want to get everything back where it should be before sending me back to the hotel. Otherwise, I feel good. I have more energy, I can stand to shower, brush my teeth, and get dressed all at the moment without breaks. That is great! The little things we take for granted. This journey makes those little things so important. I miss so many people, my life, and normalcy
I’m starting to get new hair. It’s a slow process but it’s coming back.
When the doctor visited this morning she said my goal was to eat as I would normally and walk. If i had a good day she would release me tomorrow. Fingers crossed no other setbacks in blood work.
I feel great and had a really good day. I ate all my meals and drank almost the liquid I needed for the day. Randy visited and we walked 4 laps in the hall. That’s huge for me. The most I’ve done was two. But it felt great and I was going well walking and holding my sweethearts hand. Did my heart as good as my body. It’s been a great day. Hopefully, they’ll get me out of here tomorrow. I can’t tell you how ready I am.
Yesterday I felt unstoppable, today not so much. Whenever I have a really good day it’s followed by a very tiresome day. It’s been that way since day one. I’ve been lightheaded and very fatigued today. Ive spent the day in the recliner watching tv trying to stay awake. Hopefully, tomorrow will be a better day and I will finally get out of here.