Category: Updates

2021, has been a strange year for me. I could have died.

It all started in January.  I’ll say it now, it wasn’t covid.

 

A good thing happened, my mom moved in with me on Saturday, January 9.

She has dementia, and this year has been a whirlwind of year.

A few days later, Thursday to be precise. I came home and found she had a small fall.

She bumped her head and hurt her arm. A neighbor helped her with the  small cut on her forehead. Later that night,

I found out her arm was hurting. So, the plan was to go check on it in the morning.

So, the next day I took her to urgent care, to see about her arm. And I decided to get myself checked out as well.

I wasn’t feeling well at all the entire week. I was very fatigued and weak. I had some blood drawn there. And about 15 minutes after they came back. I was told I needed to go right now, to the ER, and get a blood transfusion because of my 6.2 HGB levels.

I didn’t have to wait long at the ER to get back there, thankfully.

I received two units of bloods initially. And I had to stay through the weekend, NPO and all.

I had upper and lower scopes on Monday. There were some polpys found nothing bad. But I had to have surgery on Tuesday, to fix the source of bleeding. It was successful. And thankfully no real pain, which I was expecting more . The real reason it wasn’t bad, because of my spinal surgeries when I was younger, and three other surgeries to remove tumors/cancer. So, it was a walk in the park. Though I was still weak.

Feeling wise, I still wasn’t great. I also had a temporary catheter, which I had to leave with after being discharged from hospital on Wednesday.   

Well, the worst case scenario happened. I got sepis type infection through the catheter, after a couple weeks. And that Sunday morning, my heart rate was about a constant 145 in the early hours around 2-3 am. I actually tried to call 911, but my phone failed, and the call didn’t go through. So, I waited. The heart rate actually wasn’t too bad for me because of a previous pheochromocytoma, which causes you to have an elevated heart rate. 

 

So, I went back to St. Dominic’s that Sunday evening around 5pm. When I arrived my temp was taken and had a high fever around 103. Thankfully still not covid. But caused me to be separated from my mom. And that’s whole another story.

I think I waited 15minutes in a covid waiting area. And then I was moved to a triage room, because of my symptoms, I told them about  didn’t match covid. I was later admitted to the hospital, because of the infection, and I was given another unit of blood while in the hospital.

Well, the good thing antibiotics helped me get better. And I was finally able to get rid of the catheter. So, I was able to leave on February 3.­­­­­ Over all about 10 days in the hospital if you count the first visit. And this was the third visit to the ER, I had gone the previous week, but I was discharged even though I had concerns about my catheter. I head a great nurse that day, and it was the same one, when I arrived this this time.

Little did I know, I would be back in the hospital, but the next time with my mom. Which is about 3 weeks, spending the night there from March to May. She has been in and out of the hospital almost every month this year. From geri pysch visits, almost dying, staying in hospice care, and about seven emergency room visits.

It all started with the two brain bleed surgeries on March 16 just one day after her birthday. She had an excellent surgeon Dr. Gaspard. Which I am thankful for the prayer we had before her surgery. Later that night, after 8:00 that night I got a call after I had left the hospital . That she had another CT scan after a seizure and needed to go back in for another surgery for the other brain bleed. This one would be shorter around 30 minutes.

She was in the ICU for about five to seven days, which I was only able to see from 10-1. And later moved to a regular room until April 1. Which I was able to spend the night in the room with her. I live just a mile from the hospital, and driving back home around 7:00AM was fairly easy, to get quick shower before work. Also, you are correct that you don’t get much sleep on a couch in the room.

We ended up going back in mid April for a few days. Because of a possible syncope episode, not sure but she has passed out. After that we had her moved temporarily into a memory care, and the following day, she was transferred  to St. Dominics geri psych unit around April 28. And after leaving she was in such bad shape, she had to be on hospice. I learned this is a common thing, after speaking to another doctor, who shared about his parent and their visit at this geri psych unit. So, it can happen when a dementia patient is admitted, pretty much at any place, and they have to change their medications to help calm them down. Which most of these medications sedate them pretty good, and some medications such as Ativan can have adverse affects on a person. They don’t always calm them down. They can also causes issues with muscles, which causes swallowing, and walking. Which my mom has a problem with, and it doesn’t put her to sleep. After she builds it up in her system.

After she got back to the memory care from St. D. She had only been back about 4 days, and the night before I had a long visit with her. She seemed totally fine, sedated but calm. I was called on Friday May 14. And I had to make a decision, her oxygen levels around 80 something( I forget) She was receiving the max amount of oxygen. I was told I could take her off hospice and take her to the emergency room or they could make her comfortable and she would pass away in several hours.  I could’t let that happen, so I signed off and an ambulance was called to take her back to St. Dominics.

She ended up with sepsis/pneumonia, fever, and impacted stool. I’ll skip ahead, the next Thursday, she was admitted to Hospice Ministries. I had a lot of good talks, with nurses, and doctors about this decision.

 

“It is a peaceful place”, from a person I know, who described it to me. Because I was concerned about her going there. Hospice Ministries is a good place. I am glad for all the care she received there. She ended up getting better, thankfully. And she had to be discharged and to yet another facility. Which happened in late June.

Which then after being admitted to a nursing home, she had to go to another geri psych in Magnolia, MS (just outside of Mccomb, MS) for two weeks. Then back to the nursing home in July. Another ER visit. Then she had to go to another geri psych, at Merit Health in Brandon, from August 2 to September 2. Which I was not allowed to visit, which was hard.  She was good the rest of the month of September at the nursing home.

October was a long month, of trips back and forth to the Emergency Room. She fell about 15 times of the nursing home. Which I learned from someone from AMR.  I didn’t know about all those, I wasn’t called about those previous falls. She hit her head a lot, which was about four of the visits that required sutures. The most gruesome looking injuries was an injury to her philtrum, the location right below your nose, and above your mouth. A hole all the way through.  A great ENT, did sutures and got that fixed at UMC. And she was able to go back that night. Overall, I couldn’t have done this without a great friend, Jeff at church, who helped me, by being there with me and helping me drive her back to the nursing home each time.

I am thankful she has the care at this facility. I am glad she is in the dementia unit there.  And I appreciate everything they are doing for her and the care there. Especially in this season of covid. I’m just hoping that she can continue to stay there, because I don’t think I can handle more transfers again.

Also, my dad moved in with me mid November. And it been really good having him here with me. It helps having another person here.

I’ve been here alone since 2013, which was hard after my two surgeries, and navigating cancer. And the aftermath of that. Your life doesn’t go back to normal. Despite what others might imagine. Your life is changed from that day forth. You are in a constant battle with your health, and if anything will come back. You are not the same person you were before cancer. And even in 2021, I’m worried about a new tumor appearing, or a recurrence. I am prone to one, due to genetics.

Following instagram accounts like @thecancerpatient and @nogrieftouristallowed definitely helps.

 I am looking forward to 2022, and I hope I will read more books. I’ll have to go back in another post, and talk about those books. That helped get me through 2021.

Back to my moms fall in January, If she hadn’t hurt herself, or If I had waited one more week for her to move in with me, on January 16. I would probably not have went to urgent care. And my HGB levels would have been even more at a critical level, So, I am thankful she was here, it all worked out in God’s providence. And I wish she could still be here, living with me. Overall I expect 2022 to be a better year.

Until next year.

 

 

This update has been a long time coming. Probably should have written this at least a couple years ago.

In this year of 2020, it seems just like another year for most of the world.

With the rising pandemic of SARS-CoV-2 (Covid19) and how it is drastically effecting the world as a whole. How we interact with each other, and the routines of daily life.

I’m sure everyone wants everything to return to normal, and quick. This disruption to life is a first for most people. With the added fear and anxiety it can, and does bring.

I’ve personally been through so much, with surgeries growing up, and two different tumors, removed in the past 11 years. And still living with an inoperable one, for far too long.

Which now, I would like to share with you, what I’ve been through. And hopefully this can be useful to whoever reads this, so they can persevere through any trials they may face.

Keeping up appearances, while others continue on, when your life is not yet ready to transition to “normal.”

People will fail you, that’s a given.  And were actually never with you to begin with.

And you too will fail others, you were connected to as well.

It will take time to heal. Once you eyes are open. You learn to let people in that matter. And it’s okay to leave people behind. Because that’s the start of the healing process.   🙂

It’s better to have people that will be there for you. Remember you don’t have to put up with someone that is against you, for the sake of a group. It happened to me, and leaving a group was all in all, the best thing for me.
I had to leave two groups behind in the wake. But was all for the better.

Having scans is actually not normal, even though others want you to keep that separate. It puts an unneeded pressure, and strain upon your life. But actually it helps to build up endurance, it strengthens you. You want everything to be normal like everyone else. You have all these worries, about things coming back. Or new things arising in the future. You see the world in a different way. You leave the old you behind.                                     

 If you haven’t yet, why?

I think surgeries are a normal part of life, and having multiple back surgeries from age 5 to age 13. You don’t realize other kids, and adults never had to face this.  I know pain well, in fact I almost can’t tell the difference in a bad pain, because I’ve had extreme levels of it growing up.
I can withstand a lot.  So, I’ve had to think, and ask myself,
“Is this really serious?” Because I’ve had worse. And I know you have to press through, as I’ve done in recovering from my previous surgeries. As in life as well.

I’ll say this, I don’t mind surgeries. They don’t bother me at all. Perhaps only the night before, or the day it happens. But since I’ve got it all out of my system. I look ahead to the end. 
I keep it in my sight.

I’ll share a Bible verse that I’ve always used before going into surgery.

Philippians 4:13 “I can do all things through Christ, which strengthens me.”

As a Christian, and knowing that God is there, when I said it before my first surgery,  and up to my last two surgeries to remove a sarcoma in 2013.

I know, and trust in God, that he can deliver me safely through. That I shall not fear. That I know that I can’t face this alone. I could not even fathom that now. And I know those surgeries would have been more difficult to face alone. So, when trials arise today. I can say in truth, God is here, God hears and answers your prayers. It does not fall on deaf ears. Christ, his Son, was sent here to save us. This road ahead is unknown, we do not know the future of our life. Though we think we can plan it, yet we do not plan our steps.

So, when you think times are tough, you will look back and realize this spot, has grown you in ways, you never imagined.

Please be kind to others. Don’t think there life is back to normal, and don’t make them think they have to act that way. Surgery might be over and done. There is another thing, there is the mental aspect, which is not back to normal. So, don’t say to someone. “But you’re okay now, right? 
I wish I would have said, NO, and how unkind those words are to say.
But you smile, and give them the response they want to hear,
so they can move on.

So, in light of social isolation. Remember there are others out there, that have been isolated before all of this. When social isolation ends, will you call upon this person and simply invite them to come. Persistence is good, because sometimes, people are experiencing things that prevent them from attending.

When all is said and done, simply be there for them.

– Also, a tip for not knowing what to do when someone is going through a trial, get up and do it for them.
Don’t put out a question, is there anything I can do?
–Actually get up and do it!

Now to persistence, if they say I’ll call you. Call them back if you don’t hear back. And offer up suggestions, like you mean it. And then do it for them. Accepting help is not easy. Especially if you feel like you can do it on your own. But trust me, everyone that actually offered for a specific task
and did it.  Is remembered.

Back to today, and what’s our next step. Press on. Because this is a new challenge some are not ready to face. Don’t hold on to your possessions, because in the end, they won’t be going with you. I would say pray, pray for the world, pray for your neighbors, and make sure you are there to help. Coming together now, is what we should be doing.

When this is over, we can say thank you. And know that we are not in control, we do not know what the future holds, and we actually don’t know what the planet will look like years down the road.

2017 is here!!

As I sit here typing this in Pensacola, I hear the sound of the train passing outside. It definitely has been a year to remember. I never knew how much I enjoyed reading. And medical issues aside, 2016 is over and I know how much God provides in every way possible. I’ve learned more about myself and the world from  eyes of each book that I read. It all leads back to God, his greatness and wonderful plan. I can see their views on our creator. When I go back to the Word, I enjoy it more!

I managed to read 32 books last year. And I will give credit, where credit is definitely due for my book reading inspiration. From a friend and her blog @ Take It or Tweak It with this particular post.

It has been quite a fun year enjoying classic literature, and a few others. I want to inspire you dear reader to challenge yourself, and pick out a number of books to read. And set your course and stick to it. Classics, are a perfect place to start. Most are referenced in other literature, and it gives you connections and a way to start a good conversation. So, you will be up to date, when an author references one of these.

Here is a link to a good place to start from Clifton Fadiman’s lifetime reading list, which I mentioned in my post at the beginning of last year.

Top three books in 2016!

1) Moby-Dick 2) Middlemarch 3) Count of Monte Cristo.
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And I will add a 4) Night by Elie Wiesel, because it is captivating and it gives me a deeper appreciation as I read back through the Psalms and other scripture. You will have to read it for yourself (I will eventually add a review another day)

[Updated book list at end of this post]    

Medical related update for 2016:

MRI Femur/CT Chest, followup: Result for 2016 is good!! 3 year milestone was reached.

MRI Brain, followup: Results are stable, no growth which is always good.

Abdominal pain referenced in a previous post is gone now. But doesn’t mean possible surgery is still not in future. Which I’ve decided not to do for the time being.

Having bacterial pneumonia at the end of November though initial days of December is not fun. I am better now. But I haven’t got rid of a headache that has started since then. It comes and goes with time.

Eye related issue, that I had was rescheduled to this month, because of the above sickness interference with the scheduled appointment.

But 2017 is a new year. I look forward to what is to come this year. Another year behind and a new year is now on the frontier. And more books on the horizon.  : – )

          [UPDATED BOOK LIST]

Week 22-30: Ambassadors by Henry James – 463 pages
Week 29: Rebecca and Rowena by William Makepeace Thackeray – 104 pages
Week 30-33: Far from the Madding Crowd by Thomas Hardy – 415 pages
Week 34-35: Jude the Obscure by Thomas Hardy – 452 pages (Bought 8/8/16 after MRI)
Week 35-37: Count of Monte Cristo by Alexandre Dumas – 1100~ pages
Week 37-39: Little Women by Louise May Alcott – 504 pages
Week 39-41: Picture of Dorian Gray by Oscar Wilde – 253 pages
Week 41-44: Paradise Lost by John Milton -300 pages~  ( Bought 9/14/16 after MRI/CT)
Week 44: How the Irish Saved Civilization by Thomas Cahill – 246 pages
Week 45: Treasure Island by Robert Louis Stevenson – 210 pages
Week 45-46: A Room of One’s Own by Virginia Wolfe – 138 pages
Week 46-47: Break of Day by Colette – 168 pages
Week 46-47: Memoirs of Mary Wollstonecraft by William Godwin – 133 pages
Week 47-51: Moby-Dick; or, The Whale by Herman Melville – 615 pages
Week 51-52: Night by Elie Wiesel – 120 pages
Week 52: Twelve Baskets of Crumbs by Elisabeth Elliot – 173 pages

13000~ pages according to Goodreads among these 32 books.

 

Last year had its ups and downs. A whole hosts of things were interwoven to make the year of 2015.

In 2016, I still have unanswered questions and concerns, which hopefully in two to three months will reveal themselves.

Last year the number of scans came to the total of  6. I haven’t updated on the scans since August, which I had 4 more. The additional scans are still good. I was hoping two of the scans would answer concerns I am still currently experiencing. But it is great there is nothing that shouldn’t be there. So, that is a relief.

Along aside working, the doctor’s appointments, scans, and concerns can put additional strain on work and life.

Realizing that you are having pain on a daily basis, hinders everyday tasks. I started to journal my everyday food consumption from the  advice of my doctor. And then I started to notice pain that shouldn’t be there. I know now, I’ve had this a lot long than I realized. The only way I can remember those days, is an event or meetup happened on that day. So, it’s ingrained in my mind more clearly.

I’ve noticed the pain in my abdomen can last for several hours, if not controlled properly.  I originally used a heating pad, but moved onto OTC medicine in the last few weeks. Even that doesn’t always work. I’ve used one with sleep aids to get through early morning hours.

This has also caused missing a few Bible studies, a Symphony and other various things and events. Simply, I wasn’t feeling well enough to attend, move, or sit for that matter comfortably.

I will meet with the doctor now in February to hopefully find a solution to my problem.

… And I forgot to update that my scans have moved from every 6 months to once a year.  Managing work alongside scans, does have extra stress involved. Usually an extra day or two for results, with whatever the work day brings. So, only having to do that once a year is a relief.    : – )

Also, September ’15 is when I stopped using Facebook. It allows myself to free up time for additional things. I have time for reading books, such as Ivanhoe by Sir Walter Scott. Which is a great book that I really enjoyed. There are still distractions but not as much anymore. I will admit I was spending too much time on Facebook.

So, a resolution is not to have pain throughout the year. I hope it might resolve itself in three – four months. Which might involve surgery.  I’ll just have to see what the doctor thinks.

I also decided this year to use a planner, which will hopefully provide motivation in other every tasks. Keep tracking of food consumption late last year, is one reason that I know that I can plan for the week.

 

2016 is a New Year. New possibilities and responsibilities. New books to read. Only time will tell.

The title says it all. Two years today, I had surgery to remove a soft tissue sarcoma from the vastus medialis muscle of my right thigh. I’m glad I’ve reached this point. : -)

What have I learned so far???

God has been my rock and redeemer throughout all my trials. I still know to trust Him in everything. Because he delivered me in those trials, He is there in everything else. I still need God’s grace everyday.

I appreciate the life I have been given. I know I need to build relationships with others. I’ve taken for granted a lot of things.

We all face various trials in our lives. And we all experience difficulties. You don’t have to let certain situations bring you down. I know we wish that we would feel comfortable all the time. Life of course is not like that.

Life can still be stressful.

Your world is turned upside down after a diagnosis. You are not the same anymore. And then you start to appreciate everything that you already have and not to waste it.

All interactions and daily life changes, despite the same routine.  There will of course be worry or anxiety around the corner. We don’t know where we will be five years down the road.

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I am thankful for all the comfort God has provided. I trust and depend on Him daily.

 

 

 

 

 

 

 

 

I met with the doctor today for followup of the scans on Monday. Good MRI and CT. And I have the next 6 months scans in December, then I go to yearly after that. I’m glad for the good results.

Also, it is two years ago today, that I had a biopsy of this tumor. The diagnosis of it was not able to show its true nature. That is very common with sarcomas and it can be easily misdiagnosed. Which of course can delay the proper action that is needed. I am glad that I had it removed, even though I was told it was benign. 🙂

Anxiety can happen with dealing with scans. Especially with all that I have been through, it easy to fall back into that feeling. I know that I will never feel normal. I’ve never experienced that.  What I feel would be normal is not having to deal with any medical issues or trials of that nature. I know everyone has different experiences along the way. But going through all the surgeries and other related things,  has shaped my life in great ways.  I know that God has been there the entire way. I’ve depended on Him since my first surgery at age five. Even today my hope and trust is in Him. And I don’t know what the future holds, but God has been preparing me for it. I still have to rely on Him everyday.

 

 

I’m ready for next week to be here already.

I never thought I would this happen. Even though I have been through a lot. The feeling of wanting answers but waiting as the the day approaches can set life back. Scanxiety is setting in.

It is more of a combination of things that has made this set in more.

Well, with leg pain and discomfort setting in, back in late March. Then general feeling of not sure of what is going on but to wait to see if is just temporary.  I was able to have an ultrasound on my leg last month, and it was all clear.  It did not clear up answers in that respect. But my leg was still not feeling normal. So, I’ve been going to physical therapy for the past month. I’ve found out that my right leg is much weaker. Most of that is likely due to the large chunk of muscle being cut from both surgeries in 2013 for better margins. (The muscle that was largely cut out was the vastus medialis muscle and its function is for knee extension.) And yesterday was the last day of physical therapy. The goal was to strengthen the the muscles supporting the knee and ankle/foot.  It has definitely provided improvement more than I realized. I just have to keep up these exercises.

The two upcoming six month scans are the MRI of the femur and CT of the chest next Monday. One checks the surgical site for recurrence and the other checks for metastasis in the lungs. The common site for a sarcoma to go next is the lungs. Still watching that to make sure everything is still stable there.

I’m sure everything will be good. There are days that everyone experiences that seem harder than the previous one. And I still have to trust God in everything because He has constantly provided. In every aspect of my life.